Acute Lymphoblastic Leukemia: Diagnosis Stories
Hello and welcome to our web page! We are the parents and caregivers of children with Acute
Lymphoblastic Leukemia, or A.L.L. The day our child was diagnosed with
leukemia burns forever in our memories. Writing about that day helps
us deal with our emotions; reading the stories of our friends helps
us get to know each other better.
Many people ask us how we found out that our child had leukemia.
Perhaps they clutch their own child too tightly as we begin to tell
them . . . that's okay, we understand. Still, one goal we have in
presenting our stories to the public is to let moms and dads and
pediatricians know that leukemia does happen. Parents and doctors
need to know the signs of leukemia. These signs mock many other
diseases and conditions, but specific, usually inexpensive tests can
be ordered to rule out or diagnose leukemia.
If one child is diagnosed a little quicker, before the cancer cells
have doubled once more, before the child becomes sick with an
infection, while the child can be saved with less intense treatment .
. . then we have reached our goal.
These are our stories. Intro by Patti
The Kids: Collin - Ashton W. - Lindsay F. - Vanessa K. - James F. - Faith - Collin B. - Duncan - Dillon - Joey T. -Christine - Danielle P. - Callie - Ross - Michael R. - Richard G. - Samantha P. - Michael - Isabelle - Michael M. - Brandon - Carter J. - Tyler K. - Tomas - Caleb - Clare - Austin - Chloe - Hillary - Chad - Samantha - Robert James - Amanda - Carly - Alexis - Linus - Tommy - Kori - Melanie - Daniel - Rich - Mitchell - Cameron - Julia - Andrew - Rosie - Megan - Leah - Joshua - Emily - Benjamin - Julianna
Most of our kids have a personal web site. Please click on the names below to stop by and read updates or to leave a note in their guestbook. We always appreciate new visitors!
Colin
Colin was diagnosed with Pre B ALL on 11/17/97 when he was 19 months old. He was diagnosed on a Monday morning. Over the weekend he had trouble walking, and by Monday morning he couldn't stand in his crib. I took him to the pediatrician. She thought it seemed odd, so she ordered a blood test and x-ray of his legs. The blood test came back and she told us she was going to send us to Children's Hospital of Wisconsin. It looked like Colin had leukemia. I couldn't believe I was hearing those words. I had no clue what it all meant. I guess we were one of the lucky ones, since they "caught" and diagnosed him as soon as problems began. He went through 2 1/2 years of treatment on POG 9201. No problems whatsoever. Treatment was a breeze (as much of a breeze as it can be). He went off treatment in May 2000 at the age of 4. He was able to start K4 without having to deal with cancer and chemo. He also made it through K5. At the beginning of August of this year (2002) he had his regular routine every 3 month check up out at Children's Hospital. Everything looked great. He was feeling good, counts looked great. Within a week he was complaining that his arms were hurting. We thought maybe he fell or bumped into something and hurt himself. We ended up at the pediatrician 2 times that week to have him looked at, and x-rays taken, and labs drawn. Nothing showed up. A few days later my husband asked our oncologist to take a closer look at him. They did a bone scan and another lab. Again nothing showed up (or so they thought). Then Colin seemed to be feeling okay for about a week and a half. Then the weekend of October 7th, he was having arm pain again, especially his right wrist. I took him to the pediatrician on Saturday the 7th -- they did an x-ray of his wrist and another lab draw. Monday morning I got a call from Children's asking me to bring Colin out for further labs. They asked me if I wanted my husband Clint to meet me out there. I knew right then and there that something was horribly wrong. We got out to Children's, they did labs and an hour later we were told they found blasts. Colin was relapsing. The nightmare has started again. It has been a month now, and I'm still in shock. I'm scared. His protocol is so scary to look at. I know we need to take each day as it comes. It is so much harder knowing we have to go through this a second time. As far as my note about the bone scan -- when he was in the hospital after being told he relapsed, the doctor told us that after going back and looking at the bone scan more closely, that they found some "hot spots". We are upset to hear this, and are not really sure what to think of that at all. Would his outcome be better if they had known 3 weeks earlier that he relapsed? I'm not sure. And I know it really doesn't matter. It happened, there isn't anything we can do about it now. We will fight this thing a second time -- Colin is a brave kid. I know he will do it.
Jan
mom to Kelly, Colin & Emma
Colin (6 1/2) originally dx Pre B ALL 11/17/97 POG 9201 -- ended treatment 5/9/00. Relapsed 9/9/02 POG 9310.
Ashton
Ashton had a weird high fever for 1 night that we could not break w/ tylenol, motrin, bathing-so we called to doc at 3am and she told us her weight was borderline so give her a another half dose of each, then alternate-anyway it went down to about 101 and we fell asleep at 5 am! The next day she was listless , but had no fever, so I brought her in and the doc could find nothing wrong. I had told her Ashton had complained every other day or so about tummy aches, but she was 2 and 3/4, and I blamed it on diet. The doc only found a mild sore throat. That was 2 weeks b/f dx. Those 2 weeks were strange in that she was more tired some days and bouncing off the walls the other days. I really thought of calling the doc, but thought she would think I was crazy for telling her my 2 year old was moody. The biggest difference was that she would actually sit through a whole Disney movie-normally she would watch 15 minutes then go play. Well , those 2 weeks went by , then one night after she ate none of the dinner I made-it was a noodle dinner, something I knew she loved-I stood her up on the chair to undress and go bathe her and noticed her tummy was rather bloated looking and hard. She had 4 BM's that day and the hardness scared me-so we were at the doc at 8am the next morning, along w/ her little sister, who had an ear infection. They pushed Haley over and reaaly started pushing on Ashton's belly and had other docs come in to feel-this made me crazy. Then our onc told us she either had a big spleen, or a mass behind her spleen. Sent us for a CT scan and found a big spleen and liver, and her blood counts were off-so go to Children's Hospital in New Orleans right now. The next morning she had a BMA and started chemo that night-and here we are 2 years later!
Lori Webre
mom to Ashton and Haley, wife to Paul
Romans 12:12 "Let your hope keep you joyful, be patient in your troubles, and pray at all times"
Lindsay
Lindsay Fitzgerald, age 6, dx 3/8/02
I received a call on Tuesday 3/5 from the school nurse saying Lindsay was looking really pale and running a low-grade fever. When I picked Lindsay up she was complaining that her ear hurt, so I took her to the doctors as she has trouble with recurring ear infections. Her ears were fine, lungs were fine and we did a strep culture to be on the safe side which was fine also. The next day she started with vomiting and diarrhea. We figured it was the flu. On Thursday she was unable to keep even water down and was sleeping non-stop, so I took her back to the doctor. He said she was dehydrated and prescribed compazine suppositories to try and stop the nausea and see if we could get her to keep water down. He said he'd call back around 6pm and if she wasn't better she'd have to go to the ER for fluids. The compazine worked and she seemed to be keeping liquids down, so when he called he said she's probably over the hump and to just make sure she kept drinking. Friday 3/8 she was so weak she couldn't even cough, although it sounded like she had a gurgle in her throat that she needed to cough out. I also didn't like the sound of her breathing, almost like a wheezing. We took her to the ER and they drew blood and tried to give her a breathing treatment and see if they could find out what was causing her breathing distress. Her throat was starting to swell closed and her blood work came back with her hematocrit at 12 and her other bloodwork was way off too. They said they weren't sure what was causing the problem, but they couldn't rule out leukemia or a lymphoma. I felt like someone had socked me in the stomach and I couldn't breathe. They ended up having to intubate her and take her to the ICU where we ended up spending 10 days. The hem/onc doctor came and told us they would have to do a bone marrow aspiration to see what the bone marrow showed and assured us she wouldn't feel it (as that was my first question). Around 6pm that night the doctor came in and asked where my husband was and I knew right away it was leukemia. I explained he had to leave to get our other 2 children off the bus. By the time he finally said the words, "I'm sorry, it's leukemia", I was so numb, I couldn't even react. He assured me we could beat this and that it was the "good kind" of Leukemia and the protocol they use has an 85 to 90% survival rate. At the time I remember being really excited about the good numbers, though now I feel anything less than 100% just isn't good enough. She was so sick, they couldn't start chemo right away as her whole body had swollen, especially her neck and face. Her eyes were completely swollen shut. And they didn't know why. This was not something they were used to seeing. They had ENT specialists and infectious disease specialists come in to see her everyday, and to this day, they never have figured out what caused it. One of the ICU doctors who was there, I saw about 3 months later and he said he did tons of research after seeing Lindsay and could not find anything to give him a clue as to what happened. The swelling eventually went down and she was extubated on the 9th day and went down to the regular floor on the 10th day. While we were in ICU we had to decide whether or not to participate in a study. We wanted to be able to help any children who someday have to battle this terrible disease, but were concerned about getting the best possible treatment for our daughter. We did end up choosing to participate as not only would it help with researching protocols, but it really did seem to be the best for Lindsay. The doctors are very particular about their protocols and we felt she would be monitored even more closely if on one. We had a broviac catheter placed on the 11th or 12th day inpatient and treatments have been much easier since. We were able to go home after having spent 3 1/2 mind numbing weeks in the hospital. And so our long journey began.
Vanessa
Vanessa's diagnosis story actually started about 3 months before she was diagnosed when I (the mom) got sick. I had flu-like symptoms and was tired all the time. After 2 weeks of that, I went to the doctor, he ran some blood work and said I had mono. The recovery was slow by steady and I was feeling pretty good about a month later. In early November, Vanessa started showing identical symptoms to what I had in August. Suddenly she needed 10 hours of sleep each night instead of 8.. she was actually asking to go to bed an hour before her usual bedtime. She didn't loose her appetite totally, but wasn't very interested in food and only wanted things that were cold. She had some mild aching in her legs and just wasn't her usual sparkly self. I took her to the pediatrician thinking it was mono. Since I had mono just a few months before, he did blood work on her too. I am glad he did because it showed a wbc of 20,000 and some blasts in her blood. I will never, ever forget the pediatrician saying "there are immature cells in Vanessa's blood that don't belong there. You need to go to the hospital right now for additional tests. She has some kind of bone marrow disfunction." When I asked him what that meant he said "aplastic anemia or leukemia." The office called the hospital to let them know we were coming and I drove Vanessa over there. She was the last patient of the day on a Friday, so it was later in the afternoon when we got to the hospital. She had more blood work there along with a chest x-ray which was clear. The oncologist we met there said he was pretty sure it was leukemia rather than aplastic anemia because her other counts were good, and her wbc was relatively low so we caught it early. The next morning was Saturday and she had a bone marrow aspiration and spinal tap. They waited until the morning so she could be sedated for it. Later that day we learned it was early pre-b cell ALL. The next day, Sunday, she had blood and platelet transfusions and chemo started on Monday. By the time she started treatment, her wbc had gone up to 25,000. It's an experience no family wants to have to go through, but we were lucky that it went so quickly. I am still grateful to our pediatrician for doing the CBC. If he hadn't done it then, her wbc have continued to climb, and she might have ended up on a more intense treatment protocol.
Elizabeth Kennedy
mom to Vanessa (dx. pre-b ALL 11/18/00 at age 8, on low risk POG 9904 stratum 1 arm 1, due to go off treatment 5/03)
James
April 17, 1997. 10:45 AM I am at work, an ordinary day. Busy, laughing, dealing with problems as they come up, absorbed in what I am doing. The phone rings, "Hello?" "Can I speak to Patty?" "Speaking" "This is Anne at the University Medical Group Practice. I hate to tell you over the phone, but we think your son has leukemia. . ." I need back up just a bit, to the day before. I had taken my son, James, to the doctor, or actually to a nurse practioner. James had been a little tired for several weeks, and he also spoke of muscle pains, in varying places, like shoulders, back, legs. This in itself was not unusual for him because he was in weight training. But he just didn't have his usual energy: he could not do a 25 mile bike ride anymore without getting tired. It bothered us; he was kind of acting like an old man, too tired to run up the stairs two at a time. That particular day there was an activity at high school that he wanted to get out of, and going to the doctor was a reasonable alternative. The nurse practioner (Anne) checked him and said he looked just fine, his oxygen levels were great and his lung capacity was great. But she drew some blood for analysis -- just in case -- thinking mono. Thank you Anne! James had always been healthy, there is no cancer in either my or my husbands' families, and our own parents are over 80. He was a junior in high school and we were turning our thoughts to colleges and dealing with him leaving home to go to college. I only took him to the doctor to set my mind at ease. After we left, I completely forgot about the visit. The blood samples were sent off to the University Health Sciences Center and the diagnosis came back: leukemia. As Anne told me over the phone, she was in tears herself, apologizing for not telling me in person. She wanted James at the hospital ASAP. She had already booked a room for him. Shock set in and survival instincts took over. I knew I couldn't drive safely, so a wonderful friend at work drove me the 23 miles home. There, luckily, were my son and husband, by chance home from school and work early. Back into the car for the 55 mile drive to Children's Hospital, not knowing even exactly where it was. We were checked into Childrens Hospital in Denver within 27 hours of visiting the nurse practioner. I had an awful time opening the door that said 'Oncology' and escorting my son through it. The oncodocs re-ran the tests, and 2 hours later, we know, yes, it is leukemia. Shock. What can you do? You deal with it, somehow. You grieve. You find out what you have to know and have to do to help him. Your life stops and starts again. Anyway, you don't have much time to think because you are shoved onto a fast train that you never wanted to take in the first place. Within 2 hours of confirmed diagnosis you have been told the following: At 7:30 the next morning, your son will have surgery to check his bone marrow for cancer cells, have a spinal to check the spinal fluid for cancer cells, to begin intraethical chemotherapy, and to have a mediport installed. You have to decide which type of mediport to have installed (what is a mediport, anyway, and why does he have to have it . . . ?). Your son will have to be home-schooled for the rest of the school year. Your son may become sterile. He will have to have chemotherapy for 3 years, beginning tomorrow. You have to decide whether to enter an investigative study or to do the standard protocol within 72 hours from this moment. You find yourself pulling up a part of yourself that you never knew existed.You find yourself trying to protect family members and close friends from this terrible news, and comforting them when you do tell them. You find you are able to handle it. You pull out all your survival instincts, doing whatever it takes to protect your family. You find yourself grieving for your child, as if your child had passed on. But no, he is right next to you! So you hug him a lot and argue a bit with your husband as to who gets to stay on that horrible uncomfortable couch in the hospital room each night with your son. You eat the horrible hospital food. You learn how to grab the emetic basin in a hurry. You find it hard to leave the hospital and go to your comfy home because your son is not there. You will never again take having your child near you for granted. This is a very good thing. You start looking for more good things. There is hope.
Faith
Wednesday April 3, 2002 After having a sleepover with one of her friends, Faith had some petichia around her eyes, Shayla thought it would be best to take her to our local walk-in clinic to have a doctor check her out. The doctor mentioned that Faith’s spleen was enlarged and that the petichia was maybe from Faith being constipated and “pushing” too hard when going to the washroom, “nothing to worry about, lots of kids get this” he said. He did want blood tests and an ultrasound done but no hurry. An appointment was made for the ultrasound for about a 2 weeks later. We called the doctor as we were concerned that this was the soonest appointment we could get, he said that it would be fine. I went to work on the evening shift and Shayla had the night off. I called home several times to see how Faith was, at 10:15 p.m. I called home and Shayla said that maybe we should go to Langley Emergency. Shayla and Faith left for the Hospital and I left work to meet them there. We arrived shortly after 10:30 p.m. and were given a room in the ER a short while later. Blood is drawn at around 11:30 p.m. The doctor talks with us several times about delays in the blood work. We are told at 2:00 a.m by the doctor that the lab staff were having troubles reading Faiths blood slide so he went to have a look. He did a few years in Oncology and told us that he saw a high number of "Blast" cells, and that in his opinion Faith may have Leukemia. We were allowed to leave for home that night and were called in the early morning by the ER doctor informing us that an appointment was made for us to go to BC Childrens hospital at 1:30 p.m. Thursday April 4, 2002 We arrived a Childrens hospital and we told to proceed to the Emergency department as they were expecting us and our Oncologist, Dr. Sheila Pritchard, was paged. We were rushed into an isolation room in the emergency department, there were thousands of thoughts running through our heads, after all, there was still a chance that this was something fairly minor, maybe a small operation to remove Faiths enlarged spleen, maybe mono, maybe even meningitis. Maybe some antibiotics and away we go back home, rest up for a week and back to a normal routine. A flury of activity surrounded Faith, with Shayla and I left to watch and try to comfort her. Blood was drawn, IV lines were inserted, our lives were changing and we couldn't do anything about it. As a woman entered our room the nursing staff seemed to finish up what they were doing and clear out. She introduced herself "I'm Dr. Sheila Pritchard and I'll be Faith's Oncologist." With that one sentance we knew that our lives had just changed. With Dr. Pritchard's hand extended, I then knew that this usual customary shaking of hands took on a whole new light at this point, I was not mearly introducing myself, I was handing over my daughter's well being to a complete stanger. As if this wasn't enough, I had absolutely no idea what leukemia actually was, much less what the treatment for leukemia was. Then we heard what I thought was the most horrifying thing, we would need to be admitted to the hospital. And we would be staying for at least 3-5 days. Dr. Pritchard told us some of the possibilities, it wasn't yet confirmed that this was leukemia, it could still be something else, please let it be something else. Faith would have to have some sort of LP (Lumbar Puncture) done, sometimes called a spinal-tap, as well as a sample of her bone marrow would neek to be taken. I was still stuck on the spinal tap, more questions, was this painful, is there a general anesthetic given, what are the risks, i've heard horror stories about them, when will this be done? Next week, a couple weeks, it takes forever to get tests and procedures done, i've seen the News, "Waiting 3 month's for an operation," so I ask if we make an appointment to get this Lumbar Puncture done, Dr. Pritchard says that tomorrow morning will be a good time and it is done on the ward, with and oral drug called Ketamine. They will then be able to tell us what illness Faith has. Friday April 5, 2002 Early in the day Faith is asked to take an oral drug called Ketamine, this drug will allow her to "sleep" during the Lumbar Punture and Bone Marrow Biopsy and not have any memory of the procedure. It apparently tastes awful and it is quite the fight to get her to take this. She eventually does and the LP (Lumbar Punture) and BM (Bone Marrow Biopsy) is done. Shayla goes into the procedure room and sees the procedure take place. Dr. Pritchard informs us that there are several types of Leukemia and each have a different cure rate, remission rate, relapse rate and treatment protocol. The most common kind, ALL (Acute Lymphoblastic Leukemia) has the highest cure rate at over 80%. From the blood tests, the doctors feel that Faith has either ALL or AML (Acute Myeloid Leukemia - a cure rate of around 50% and the treatments are much more intense), the BM will be able to tell us what type Faith has, and the treatment protocol to follow. We will find out later this evening what type of Leukemia Faith has and will battle. Later that afternoon Dr. Pritchard sent a Fellow to our room to ask that we join them in the Parent Confrence room, the Music therapist, Erin, joined Faith and they sang songs and laughed while we were learning of what we will be dealing with. Shayla, Lee, and myself went to the confrence room and were joined by the intern, Dr. Shamus, Dr. Pritchard and Faith's RN Victoria. I was trying to read the look on the Dr.'s faces while we still didn't know what we were up against, praying for the lessor of two evils. My attempts to read their minds were futile. While no words were spoken in that first ten seconds that lasted well over an hour. I lowered my head as Dr. Pritchard began to speak. No long winded explanations, no softening the blow, just a short phrase and the three letters that would changed the way we lived forever...."What Faith has is ALL" It's ironic, you are sitting, waiting to hear what is ailing your child, your own flesh and blood, and what you are praying and hoping for, is a disease that can be terminal, but is the lesser of two evils. The whole while only wanting the best for your child, wanting them to be free from diseases.
Collin
I guess it really started during December of 2000. I didn't think much of it then, but in hindsight I'm sure that's where it all started. Collin was 4 1/2. He had had a few colds & an ear infection in December. He never seemed to fully recover from them. He was very pale, which for him is saying something because he has an olive complexion to begin with. And even on Christmas Day, though excited, he seemed to tire easily. Shortly after returning to school after the new year break, I noticed a 'rash' on his arm & one on his back. It didn't seem to break the skin at all, but be just below the surface. My mother is an LPN and lives next door to us. I asked her to come over and take a look at the spots. She told me that she thought they were petechiae & that we should get him in to see the doctor (which I had already planned to do). That night I did the worse thing a person can do when they don't have all of the information, but I think it may have helped me deal with the diagnosis when it came. I got out my medical dictionary and looked up petechiae. It led me to several conditions, one of which was leukemia. When I told my husband about my reading, I cried soooo hard. I was soooo scared. My baby, my only child could not possibly have leukemia! To this day, of all of the conditions that petechiae can be associated with, I have no idea why I focused on leukemia. I can only attribute it to a woman's/mother's intuition. My husband, my rock, held me and told me that no matter what, it would be all right. We would take care of our child. I fell asleep with tears on my cheeks. The next morning, January 16, 2001: I didn't wait for the appointment time that I had scheduled for Collin. Our ped doc has 'urgent care' treatment from 8 - 9:30 every morning. I was the second parent in the door. He looked at Collin and thoroughly checked him over. He confirmed that the 'rash' was indeed petechiae & said he wanted a blood test on Collin. He thought it might be a condition called thrombocytopenia, something easily cured by several transfusions of platelets over a period of about 6 months. So, I took Collin to the lab, and held him down while a nurse took blood from my baby. Afterward, we went home to wait. Later that afternoon, around 2:30, I got a call from the pediatrician's office. The doc wanted to send us down to Florida Hospital Orlando for admission and referral to a pediatric specialist to confirm what he still thought was thrombocytopenia. I called my mother and told her what was going on. She was just waking up to get ready for work, she works nights. My husband, who was a truck driver at the time, had left for Georgia that morning. Thank God for my mother. She called off of work for the night and, at 6 PM, we were on our way to the hospital, which is an hour and a half away. We got settled in and they started and IV on Collin. Which, although not happy about it, he tolerated the procedure amazingly well. They drew blood several times during the night. I don't know if my mother or I got all that much sleep that night. Thankfully, Collin seemed to sleep rather well. January, 17, 2001: A doctor came in, and not the one that the pediatrician had referred us to. He introduced himself as Dr. Hajjar. He said, "There's no good way to do this, so I'll just say it. Your son has leukemia." I literally felt the earth move. All I could do was stare at him. He proceeded to tell us that it looked like he had the best form of leukemia, ALL. (As if any of them are good, but now I understand his wording better.) He told us briefly about the length of treatment and the cure rates. He was very positive, friendly and concerned. What I liked best about him, and still do, is that he always talked to Collin like a person, not a child. He turned and told Collin what he would like to do, listen to his chest, etc. and asked Collin if that was OK with him. Life has not been the same for any of us since that day. On January 19, 2001, Collin had a bone marrow test, spinal tap and had a central line (broviac) placed in his chest. The results of the bone marrow showed that he had 89% leukemic cells in his marrow. His white blood count at admission was 120,000, I think. His white count should have classified him for high-risk treatment, but when the cytogenics came back it was discovered that he had the presence of the TEL-AML1 gene. A genetic translocation that has shown a good response to treatment. Collin was placed on the standard risk treatment, POG9905, and randomized into Arm C. He has dealt very well with his life since diagnosis and takes a great interest in things like x-rays, blood tests and helping with his dressing changes and flushes. He has taught me a lot about personal strength, faith and hope. And, of course, love.
Shanon
proud Mom to Collin, 6, dx 1/17/01 preB ALL, POG9905C, intensive continuation 9/21/01; maintenance 9/6/02 (still a Legomaniac & the best reader in Kindergarten!!)
Wife to best friend, Jay for 8 years and counting (training for TNT Celebrate Florida Century Ride, Feb. 2003 - my other hero!)
Duncan
Duncan was about 2 1/2 when it all started. The boy who had long before dropped his nap would often lay down with me in the afternoon and go to sleep. I was actually grateful for this as I also had a six-month-old wearing me out. The event that really clued me in was when he wanted to go for a walk one day. When we turned to come home he seemed pooped and his lips even looked blue to me for a minute. I thought maybe he was cold because he'd been in someone's sprinkler and was a bit wet, but it was a warm July day. I decided to say something to the pediatrician at Collin's 6 month checkup in two days, but before I did, the pediatrician said he's too pale. He looked at his lips, his gums, the insides of his eyelids were the same color as the rest of his face and took some blood to test for anemia. I suppose it had been a gradual change that we really hadn't clued in to. The next day we were sent to see a specialist at Children's Medical Center in Dallas and more blood was tested. Aside from extremely low hemoglobin (less than 5, normal is about 12), everything else was normal, so it was decided he had Transient Erythroblastopenia of Childhood (TEC). TEC is a condition in which the bone marrow just stops producing red blood cells for a while, no one knows why, but usually resolves itself within a month or two. Duncan was given a transfusion and we were sent home with a follow-up appointment to check blood counts again. The first two weeks his hemoglobin didn't change much, but by the time the one-month follow-up was due I knew he was anemic again. The fellow still told us he didn't think it was leukemia (hemoglobin was a bit over 5 this time), but they would do a bone marrow test "just to make sure." Duncan was given another transfusion and the bone marrow took place the next morning. It was so painful to watch. They obtained a bone sample for biopsy, but the aspirate wouldn't come out. The fellow and the NP stuck both hips, but were only able to obtain a small amount. That didn't seem like a good sign, but I stuck with the TEC diagnosis and was shocked to learn two days later that Duncan had ALL. Because his marrow was so packed and they were unable to obtain an adequate sample, we do not know the cytogenetics of his leukemia, but he was classified as standard risk for his age and low white count. So far the standard protocol is working.
Dillon
At the tender age of 16 months, with no obvious prior symptoms, Dillon suddenly stopped walking and was in a great deal of pain. On October 23, 1998 he was admitted to hospital and was diagnosed with pre-B ALL [Acute Lymphoblastic Leukemia]. Because of his age as well as several other factors, he was considered to be of standard risk; neither high nor low. We chose to proceed with a clinical trial through the POG 9605 [Pediatric Oncology Group]. He achieved remission and was able to resume his very active toddler social life. He continued on this protacol for the next two years and seemed to do very well, with few immediate side-effects. On October 16th, 2000 Dillon relapsed with 35% blasts in the marrow as well as in both testicles. His best option at this time is a matched unrelated bone marrow transplant as there is no close match in our immediate family. Dillon is in remission again and is coping incredibly well for a 3 1/2 year old who has endured such tremendous obsticles. His spirit of fun is always encouraged and enjoyed by his friends and family. March 28, 2001 was the day Dillon received his bone marrow transplant from avery thoughtful, un-related donor. We celebrated his re-birthday at 9pm CMT at the Children's Hospital in Calgary. His counts began to recover 13 days later.
Joey T
Tuesday, March 20, 2001 Joey is a typical 9 year old boy who enjoys everything. He loves animals and he has a dog(Keesha), bird(Phoenix), bunny(Nutter Butter), frog(Fred) and three beta fish(Beavis, Baxter and Birney. He is in the third grade and does very well in school. He loves sports and plays on a baseball team and swims competitively for two swim teams. He has an older siter Alexandra who is 13 and an older brother Bobby who is 12. For a couple of weeks Joey had not been feeling very well. He never complained but he looked pale and was tired. On this day he came home from school with a bruise on his leg and I knew he had Leukemia. I called my pediatrician and told him what I thought was wrong with Joey. He took a look at him and assured me that there was nothing wrong but a virus. I insisted on the blood work and that night we were sent to Lehigh Valley Hospital. We met Dr. Stern and she was wondeful. She did further blood work and found not only that Joey had Leukemia but that his kidneys were beginning to fail. Since she is connected with Children's Hospital of Philadelphia she thought it best that we be admitted down there. She considered sending us down by helicopter during the evening but Joey responded to IV's enough that we were able to go down by ambulance the next morning. Before we left she did a spinal tap and bone marrow aspiration. Unfortunately Joey did have cells in his spinal fluid and he had 96% blasts in his marrow. We arrived at Children's and were placed in the Pediatric Intensive Care Unit. Dialysis was set up in the event that it was needed. We had a wonderful renal doctor named Dr. Kaplan who did his best not to use the dialysis. On Thursday we met with the Oncology team to find out what type of Leukemia Joey had. We were told that he had Acute Lymphoblastic Leukemia (ALL) t-cell. Because his white cell count was low at diagnosis (28,000) and he was only 9 he was placed on a standard risk protocol CCG-1991. Chemo was then started on Friday March 23. 2001. By Day 5 Joey's kidneys were beginning to function well on their own and the femoral line was pulled and the dialysis machine removed from his room. The protocol for Joey's type of Leukemia will run for 3 1/2 years. Thus begins his journey. On April 26th, they found leukemia cells in Joey's spinal fluid. We went back to clinic on Monday April 29th to check the bone marrow and it was clear so Joey has what is called an isolated CNS relapse. They also checked his spinal fluid that day and that also cleared from the medicine that was given on Friday. So he is officially in remission again. We were placed on a relapse protocol that is very intense in the hopes of keeping him in remission so a bone marrow transplant can be done in the Fall. We spent almost the entire month of May in the hospital with an ANC of 0 just what the doctors wanted to happen. Joey also had 5 spinals with chemo placed in his spine to stop and leukemia cells from multiplying. Alex and Bobby did not match Joey so we will be searching the registry for an unrelated donor. We are currently home this week waiting for Joey to get stronger before going to the next phase. On Tuesday, June 11 he will be admitted to have a port put in and then start the high dose ARA-C regimen. As usual Joey is doing remarkably well with all of this. He just amazes me every single day and I am so proud of him.
Christine
In late October or early November, Christine began to complain about knee pain. I thought at first this was attributable to her gymnastics or maybe growing pains. After a couple of weeks when it was clear this was something "real," I made a pediatrician's appointment for her. The pediatrician spent about 20 seconds with her and said that she should stop doing gymnastics and rest more. Within about seven days, Christine left school with severe abdominal pains. I took her to the emergency room fearing appendicitis. She had a fever at the time. After a few hours, Christine felt better and I was told that she had a virus. All blood counts were relatively normal. We headed to back to the pediatrician in a few days who concurred that she had a virus. I repeated my concerns about her knees and told him that she had had a few bloody noses lately. He didn't seem overly concerned, and I kept her out of school the remainder of the week. The following week she seemed to feel much better, but the week after that she started complaining about sore joints again, especially her back. I thought maybe she was sleeping strangely, so I had her switch positions. Then she started getting extremely fatigued. Oddly enough, I started feeling very bad at the same time and believed I had caught the "virus." Christine's last day of school before Christmas vacation was December 21st, and on that day, she pointed out a lump on the back of her neck. I knew this to be a lymph node. We were planning a trip to Disney World on December 26th, so I thought that if the swollen lymph did not disappear in a day or so, we would have to tough it out and go to the emergency room on the holiday weekend to get a prescription. I thought that once they figured out what she had, I could get the same medication! I first tried to go to an UrgiCare on Christmas Eve, but when we got "called," I was told they wouldn't take my insurance and she could not be treated. This turned out to be a blessing in disguise. Rather than go elsewhere, however, Christine said she was feeling fine so we went on with Christmas Eve. The next day, however, Christine woke up in so much pain she could hardly move, and so fatigued she could not get out of a chair. Tylenol fixed this for a few hours, but in the afternoon she fell asleep and when she woke up, she was hot. I took her temperature, which was somewhere near 103. I immediately took her to the emergency room. At first the emergency room tried to send us away after a doctor went over her blood work from three weeks previous. When I refused to go, they lined up tests. A doctor came in and said he was 99% sure it was mononucleosis. By the time we got blood tests back, the first doctor was off duty. I got the fateful call out of the room and was informed they were arranging transportation to the Cleveland Clinic for a bone marrow test. I was told that the blood test was extremely abnormal and that the "worst case scenario" was leukemia. We arrived at the Cleveland Clinic, and even before any bone marrow test, the pediatric oncologists arrived to tell me that to them there was no doubt that this was leukemia. They were even relatively sure that this was "pre-B" leukemia because of its "classic" symptoms (that obviously the pediatrician did not recognize). Needless to say, that might very well have been the most memorable Christmas I ever had! Also needless to say, we didn't make it to Disney World. Before diagnosis, Christine was extremely healthy -- a vegetable eating vegetarian from a family generally blessed with heartiness and good health. Although I don't dwell on "what went wrong?" I would be intrigued to know what caused the leukemia and whether there was a point of no return or whether there really was a time when this could have been stopped before it became leukemia. I am also intrigued by the different diagnosis stories. Christine's WBC at diagnosis was out of the stratosphere (143,000), but the platelets and hemoglobin were relatively normal. I suspect that fooled the pediatrician after the original blood test.
Karin Mika
mom to Christine, now 13
Danielle Paine
Dani was diagnosed with t-cell ALL October 2, 2001. She was 13 at the time. This is the story behind her diagnosis. In late August, she had a sports physical at the local clinic. Everything was fine. The middle of September, she caught a cold. The cold symptoms cleared up within a few days. But that next Saturday, she came to me complaining that her glands were really hard. I felt them, and they felt like walnuts. Her throat didn't hurt, and she wasn't coughing or running a fever, so I wasn't overly concerned. Sunday morning she woke up and her glands had swollen tremendously. I immediately thought she had the mumps. But after researching a bit on the net, decided that probably wasn't the case. Monday morning we went to the local clinic again. The doctor was concerned about mono and strep, so did blood work. Both cultures came back fine, so he told us to just go home and wait and see. She was feeling fine, so she went to school. Wednesday afternoon, the school nurse called me and said she needed to be seen again. We went back to the doctor on Thursday and decided to take x-rays. On Friday, we went back in and he said that there was a "thickness" on her lung. He wanted to get a CT scan done, which we had to do at the hospital 30 miles away. He said we could try antibiotics over the weekend, which I wanted to try. And he mentioned biopsy. At the time I was furious that he would bring up something like that to scare me to death. We went out for supper for my mom's birthday with my family, Dani was eating good and feeling fine as far as I could tell. The CT scan was done on Tuesday. I honestly expected nothing to come from it. Dani went to school Wednesday morning, and I packed my bookbag, expecting to head off to class myself. I walked into the doctor's office and was led back to a room right away. He came in and said she's got masses all over her lymphatic system. OK, I thought - an infection out of control. Then he said, it looks like lymphoma. I sat there thinking, but wait, that's cancer. He got up and left the room, came back in with a one page fact sheet on lymphoma. He rambled on about something or other, the only thing I comprehended was whether I wanted to go to University of Iowa or Mayo Clinic. I chose Mayo, and he made arrangements for us to go up on Friday. Friday we met with our oncologist and the surgeon who was to do the biopsy on one of the lymph nodes in her neck. Dani was still feeling pretty good, although stunned by the news. We got back from Rochester and she went to the football game that night. Her biopsy was scheduled for Monday morning. When the surgeon came out to report to us that everything went well, he said it's definitely lymphoma. Tuesday morning we met with the oncologist again and received the news that it was leukemia, not lymphoma. This was another blow, as we had researched lymphoma and found out it was a very treatable disease. Leukemia was a terrifying word to us, as Dani's paternal uncle had died from it in his teens, and my maternal grandfather also died from it. The oncologist told us he had seen only one other case of leukemia presented in this way in his 30 some years of practice and that patient was 27 years old and a physical therapist now. There are several things I believe are noteworthy in Dani's case. At diagnosis, her blood work was not typical of leukemia. Her white count was below normal, but red cells and platelets were normal. She never ran a fever, never experienced any pain or fatigue. The time elapsed between the first symptom of gland swelling and diagnosis was 2 weeks. Yet she was an extremely slow responder to treatment, taking 28 days to achieve remission. By the time she started treatment, there were tumors in the lymph nodes of her throat, lungs, abdomen, and groin. She has a family history of the disease on both sides. It's also hard for me to believe the virus that she had a week prior to the swollen glands is unrelated. Dani is one year into treatment and doing fine despite some setbacks in treatment.
Callie
Callie had leg pain on and off for over a month. She kept "spraining" her ankle, then her knee, then the other leg got involved with shin pain. There was no bruising or swelling, then she could walk fine the next day. We had 3 sets of x-rays which were clean. We were scheduled for a referral to ortho specialist the next week. We had visited the Pediatrician about 5 times in 6 weeks for the little virus's and leg pain that were becoming persistent. My motherly instinct got the best of me and I asked the Pediatrician to please see her again and check her out, I didn't think I needed to see the ortho specialist and didn't want to wait. I went there with a type written note of all of the symptoms. Here's the letter...
November 21, 2001 Dr. XXX, I'm writing this down on paper so we can talk as little as possible in front of Callie. She is very intuitive. I'm trying to downplay the symptoms in front of her. We have an appointment next Tuesday at XX Orthopedic Group. They called today and still have not received a referral from your office. These are some of the symptoms she has been experiencing recently: ? Low grade fever daily ? Moodiness, cranky, sensitive to loud sounds, light sensitivity ? Tummy ache ? Diarrhea ? Fatigue ? Purple round bruises on her body (knee, ankle and leg areas and today for the first time I've seen it on her elbow) ? Red eyes ? Purple/pink circles of tiredness under and around eyes ? I feel her tummy has appeared full and round and at those times she has had excessive gas and burping ? Muscle tiredness causing her to fall and injury her self (sprain like symptoms) These falls have lead to: ankle, knee, and shin boo boos that cause her not to be able to walk for 24 hours, then she gradually improves and recovers with a limp. Then it starts all over again once she is feeling better enough to be active. She has not walked without a limp for months now. She cannot run. ? When she gets up from sitting on the floor, it takes her a while to get up, kind of like an old person She has spent a lot of time lately, sitting/laying on the floor coloring and watching videos I'm very concerned. Mothers intuitive tells me something is not right. Can we schedule lab work (blood/urine)?
I knew something wasn't right but had not idea what I was about to find out. The nurse did a finger poke and the Doc. examined her. She (Doc.) then left the room, made a phone call and came back in and asked me step out of the room with her, this was scary! She told me the spleen and liver were enlarged and wanted us to go right now to the Children's hospital ER. She told me that an Oncologist would be waiting for us at the ER. I was crying, in shock and scared, thank goodness my mother in law was with me. We were admitted quickly and it all started. The next day was Thanksgiving and the next day was her 3rd birthday, and day one of induction therapy. She is on POG9905A and doing great! It truly is amazing how resilient kids can be at this age. I used to hear people say it, but now I have experienced it. She refers to the week of diagnosis that we spent in the hospital the time she "sprained her ankle". She doesn't even remember getting leg pokes. As I look back I can pull and share good memories out of the battle. We have fun and look forward to seeing the nurses at outpatient when we go for "back poke" and have "sleepy medicine" in the port. We looked forward to the scheduled hospital stays (6 visits every 3 weeks for 2 nights) over the weekend because we made it fun and visited with the wonderful staff. (We don't look forward to unplanned ER visits.) We look forward to weekly clinic visits to see the wonderful people at the clinic. It is also good bonding time for mommy and daughter to spend the day together, we always try and do something special. She takes pills unconsciously now, like its nothing, that was a big hurdle but we triumphed! We try and focus on the good things which makes it all easier.
Kim Williams
mom to Callie Jean (3); dx 11/01; POG9905A Orlando
hoofprints@mpinet.net
Ross
Our story probably sounds pretty familiar. In August of 2000 I had taken my children to the pediatrician for their well-check ups before school started. Both children were great - normal CBC, etc.. By September we noticed Ross was tired a lot and seemed pale. At first we attributed it to school starting, playing football...but when he started having severe headaches and had to leave school, I got worried. Of course, leukemia never entered my mind, but I did think he had some type of infection. After taking him to our local doctor, who found an enlarged lymph node on his neck (I had NO idea it was there!), the CBC showed he was severly anemic. Thus the headaches and pale skin. To begin with we thought he had mono. They ran numerous tests on him and he even showed up positive for one of the Epstein-Barr tests. That doctor still wasn't satisfied so he sent us back to our pediatrician. After looking as the CBC's, he laughed and said that must be a mistake...they couldn't be that low. Of course, after repeating them...they were that low. He sent us on to Children's the next day for a bone marrow test. We were still optimistic, as was the oncologist. Ross had broken out in a rash that morning (not petechia, though), and she felt that is was a viral infection. Lo and behold, he DID have leukemia. Obviously we were in shock. Those first few weeks are something of a blur now. We immediately started on POG 9605, and he was in remission one month later, the day before his 10th birthday. He had a relatively smooth time of it and was in Maintenence when he relapsed in the CNS. He had been in remission for 18 months. I'd like to be able say we had some warning signs...but we didn't. He was feeling better than ever, playing baseball, enjoying life to the fullest. He had gone for his routine spinal w/Methotrexate when they found the cells. It was not in his marrow, only in the CNS. I can't explain the shock, anger, and fear I had at that moment. It was worse than the original diagnosis. Suddenly, our security blanket was GONE. He is now on a much tougher relapse protocol, POG 9412. He is in remission again, hopefully for good this time. God bless,
Lisa
mom to Ross - age 11 1/2, dx ALL 10/4/00, isolated CNS relapse 4/22/02, and Laura, age 9, wife to Kennon for 16 years.
Michael
Michael's story starts about 9 months before we find out. Michael was constantly sick with a cold and ear infections he couldn't get rid of. He got strep and had a seizure from the fever. In the er the doctor looking after him said, "His white counts are really low." I asked if it was normal. He said that some viruses cause the white counts to go down. He kept up with a cough for a while. The peditrition thought allergies. We did not get him checked though because I knew it was something more. I guess I was right unfortunately. He continued with his ear infections. We decided to go for another set of tubes. He had tubes when he was 1. I made an appointment with a local ear doctor and he agreed and scheduled surgeory without doing blood work. In the mean time, we decided to go to Pittsburgh Children's Hospital to have his ears checked out since he had some hearing loss. This doctor agreed and also wanted to have his adnoids removed. She ordered blood work. The same time we went back to the peditrition for another cold and cough. He looked at him and said he looked pale. He wanted to do blood work to see if he was anemic. We went to get the lab work done both at the same time. The ear doctor called back and the said that we would have to repeat the blood work because she couldn't operate with his counts like this. I called the peditrition. The one that ordered the counts was out that day and the counts were sitting on his desk. That night Michael had his first soccer practice. He couldn't walk after and was exhausted. The next day while I was picking up Michael from preschool the peditrition called then called my husband at work to get a hold of us. He told us to go to Children's. If it were his child he would go right then. I'm not sure if he told Sal or not what he thought it was but I didn't know. I was thinking an infection but in my heart I knew it was more. We scurried around to find a baby sitter for our two other kids without bothering my mother to worry her. We didn't bring anything except for Michael's Pooh Bear. We got there and the intern had to break the news to us. We were admitted that night. The next morning they did a bone marrow and confirmed the results. We waited for our port since we had to coordinate it with the ear doctor to get the tubes in. That is the start of our journey. We are still riding the roller coaster and waiting for the ride to end. The beginning was a blur we were going too fast and then the ride went up and down. Right now I am dreading another down hill. The little bumps we can handle.
Kathy and Salvatore Ricigliano
parents to Michael Ricigliano dx 3/22/01 currently maintenance ccg 1991
Center Township, PA
Richard G
Richard Goodlaxson was five and a half when diagnosed with high risk lymphobalstic leukemia. He had a normal, natural birth. He had chronic ear infections as an infant and a toddler and took lots of oral antibiotics. He had ear tubes placed at age two and a half, also an adenoidectomy. His speech was slow and late as a result. He turned 5 in October 1998. That winter he was chronically ill - one virus after another, finally in the spring he developed chicken pox severely, developed pneumonia which did not respond to antibiotic therapy, spent two nights screaming with severe leg pain and was diagnosed. What a dry, medical synopsis. Richard Goodlaxson was 5 and a half when he started missing school all the time, when he was always feeling ill, when there was no fever and he tried to go to school he was listless and inattentive. When teachers and neighbors rolled their eyes and said sarcastically "OH, he's "sick" again." When his Mom thought she might be crazy for being so worried. When the pediatrician kept reassuring and suggesting that Mom was a little over concerned. When Mom finally lied and exaggerated to get her little boy a blood test - thinking infection, anemia, something. Not prepared for the truth. Richard was 5 and a half the night Mom drove him to Stanford for his first bone marrow aspiration, his first night in a hospital bed, his first awareness of Mom and Dad not being able to fix things. Richard turned 10 yesterday. He spent over a year in a hospital bed. He relapsed at age 7. He enured a bone marrow transplant. He has been addicted to morphine, demoral, and dilaudid. He lost part of a lung. His brain has atrophied. His adrenal glands don't work anymore......And he is a happy, exuberant BOY. He loves swords, playstation, legos and goofing off. He went back to school this September. He has a crush on his teacher. He will be a ninja vampire for Halloween. Life is good.
Susan
mom to Richard dx 4/15/98, POG 9406-A, relapsed 11/99, BMT 2/00. LAST hospital stay 8/01 - ALSO mom to the stalwart Abby 19 and a freshman at Bryn Mawr College, and the incredible Ruth 14 BM donor and just starting high school
Samantha P
March of 2001 Sammi started complaining she was ache and tired all the time.( she was 2 1/2 years old) Her energy level went down and she slept alot. Then she started complaining of pains in her legs and arms. Then it was her back and headaches. For almost 2 weeks on the phone the doctor told me it was the start of cold and flu season and not to get to concerned. But i knew my daughter and felt uneasy about all this. Then we noticed her appetite was non existant. The next day her face and skin tone was like a yellow banana. This time instead of calling the doctor i just brought her in. After seeing her and feeling her tummy they thought at first it was hepatitus. When they called with the blood results we were told to go right to the hospital . Thats when the real drama unfolded. We were filled in on this type of leukemia( acute lymphoblastic leukemia) and spent the first 21 days in the hospital. Today she is still in remission but only halfway through our protocol. She is a tough, energenic little girl who does not know how to give up.
Michael
Michael went to a Bull Bash with his Dad and started having difficulty breathing, so he brought him home. We took him ER and they dx him with pollen related asthma and prescribed some steroids for him. A couple of day later the ER Dr. called and said that Michael had a couple of spots on his gall bladder that they spotted on x-ray. I tried to get him in to his Ped and went on a waiting list. A few days later we got in and they decided on an ultra sound for him. The spots ended up being on his liver and the radiologist said that they were calcium deposits likely from a previous infection. Anyway, his Ped wanted to check it out further and started doing blood tests on him. Michael was now having bone pain and holding his arm like it was in a sling. He also had an ear infection and fevers. We continued blood test and the Doc. was checking for Lupus, Rheumotoid Arthritis and lastly, Leukemia. They ruled out everything, including Leukemia because Michael's counts started to improve. We knew that something was still not right, but the Dr. told us to go on vacation, so I took Michael and Miranda to Florida for 3 wks. While we were there, Michael got hurt wrestling around with his cousin. He was walking really weird and he was very pale. He developed and ear infection there and I took him to a Dr. and he was put on antibiotics. When we returned home we went to the local hospital for more blood tests. That afternoon the on-call Dr. called me and said that Michael had blasts in his blood and that we needed to get to Portland immediately because Michael had Leukemia. He was officially dx on 7/15/99. The reason they missed it earlier was because of the steroids he was treated with at the ER. (Lack of communication) That is why his counts improved and they ruled out Cancer. I brought my son back from Fl. on his death bed. Platelets were at 18,000. I shudder to think what would have happened had we not come home when we did. The Dr. said Michael may have had a week left before he would have died.
Karen
Mother to Michael (8) dx 7/15/99 ALL (CCG 1952 Plan C) OT 9-16-02 Mother to Miranda (5) Wife to Skip for 16+ wonderful years
Isabelle
Isabelle was born on April 2, 1999, following an uneventful 5 hour natural labor and birth. She had jaundice and required a biliblanket for ten days as a newborn. She had no other illnesses other than the roseola virus at 7 months of age. Isabelle was diagnosed with very high risk infantile ALL on Monday, January 3, 2000. She was 9 months old. She had a white blood cell count of 268,500 and the chromosomal translocation 11q23 (MLL gene). In my Mother's Journal, on Sunday, January 2, 2000, I wrote: "Dear Isabelle- You poor baby- you have been so miserable for about a week now and we think it is because your molars are coming in. You have been so grumpy during the day and wake up crying in the middle of the night (which you've only done once or twice before in your life). Your dad has been so great... taking turns with me in the middle of the night walking you around. We go tomorrow to the doctor for your 9 month physical and I am hoping she can do something for you-- it is so hard to see you in such pain. You spent the millenial new year at home-- just the three of us. This is the first New Year in a long time that your Dad and I were asleep before midnight! We love you so much and hope you will feel better soon. Love, Mom xoxox" Isabelle showed no symptoms of leukemia until about a week or two before diagnosis. We had a long list of questions to ask the pediatrician about at her 9 month physical... never realizing they were all symptoms of the same disease. Isabelle had bruises all over her legs. She began crawling about two weeks before diagnosis, so we attributed it to crawling on our hardwood floors. She was becoming more and more pale. It was the middle of winter, and my husband is very fair-skinned, so we didn't think much of comments from strangers about how fair-skinned she was. She had petechiae all over her body... but they were very sporadic. Could this be what beauty marks look like before they turn brown? We made a note to ask the pediatrician. My normally very happy, easy-going baby was becoming more and more agitated and cranky. I called every friend I could think of who had older children to ask about teething. Could she be so uncomfortable from "just" teething. "Oh yes" they all replied. Isabelle, who had slept through the night since she was only a few months old, began to wake and cry for two hours each night. Again, I attibuted this to the teething. The biggest red flag that we missed was her passing out in the bathtub for a few nights before diagnosis. I was so very concerned about this, but my husband thought it was from her lack of sleep at night. I thought I was being paranoid. Later we learned that she was passing out because her red blood cell count was non-existent. Isabelle was diagnosed on a Monday. I called the pediatrician after-hours on Saturday night because I knew something was wrong. The nurse agreed with me that Isabelle was probably teething. I insisted that my husband accompany us for Isabelle's 9 month physical... I felt that something was terribly wrong. Our pediatrician took one look at Isabelle and said that something was not right. She took a CBC, came back into the room, and knelt beside me and began to cry. I will never forget the words, "I think she has leukemia." Isabelle also had an enlarged liver and spleen at diagnosis... we affectionately refered to it as her "Buddha belly"... thinking she was just a chubby gal. We were sent immediately to the university hospital in our city. I remember thinking the whole way there that Isabelle simply had a virus that had the same symptoms of leukemia. She spent a few hours on the ped/onc floor, and was then moved to the PICU for the first week of her initial hospitalization. She remained hospitalized for two and a half months, followed by many hospitalizations during the following year of treatment. In my mother's journal, the day after Isabelle was diagnosed (January 4, 2002). I wrote: "My sweet Isabelle- Yesterday we found out that you have leukemia. Leukemia. I can't say it, write it, or even think it without beginning to cry. All of yesterday seems like a dream. We went for your 9 month physical and Dr. B noticed that your spleen was extremely enlarged. All of a sudden all of the symptoms that we thought were due to teething or crawling were actually symptoms of leukemia. Your first night you spent in the PICU. I slept with you in your crib. You really like your night nurse Betsy-- she calls you 'Turkey Butt' and 'Miss Giggles' and you think she is a riot. I only got about two hours of sleep last night and I am feeling like this is so surreal. Your Nana is coming from NC today-- I know she will be a great help. I prayed for you all last night-- I must have said at least 170 Hail Marys. I love you so much sweetheart and can't wait until we can go home together helathy. Mama xoxox"
Annie Thomas
Michael
Michael was 3 years old when he was diagnosed with leukemia. he had been crying about his lower back hurting. i just gave him motrin and figured it would go away and it did. probably a month later the same thing happend and i did the same thing and again it went away. then like two months later he started to cry saying his back was hurting so i gave him motrin and thought that it was from riding around on the go cart with his uncle. well it didnt go away this time. after one day of giving him the motrin i called the ped and they couldnt get me in until later in the day so i said forget it and took him to the local ER. They did urine tests and just checked him out and said oh its probably just a bladder infection and gave him antibiotics. we went home and the next day he was still feeling so bad where he wouldnt walk. Just layed on the couch. It was really quite sad. Well i called the ped again and i brought him in. He looked him over and said to stop giving the antibiotics and to wait till monday (meanwhile its thursday) and take him to a back specialist. Just keep giving him the motrin. So i went home and i wasnt happy about this. i called him up and said listen something is wrong with my son and i need to get blood done to make sure everything is ok. My sister happend to stop to see him because i had told her about it and she saw how worried i was and she called her childrens ped and i brought him in there right away and she told me that his back hurting was definately a cause for concern and sent me back to the local ER for blood work and all kinds of testing. I got home from the ER and the phone rang right away saying to relax, have some dinner and when your done go back to the local ER and they were going to take him by ambulance to a different hospital. And that his blood counts were a little messed up and they need to do further testing that this hospital couldnt do. Well gee i just relaxed and had a nice dinner. i had a heart attack and flew back to the ER. thats about it. Michael hadnt been sick before really at all since birth. he was jaundice. I had gestational diabetes while pregnant and i had to take insuline while pregnant and i wonder about that. i will never know what caused it.
chrissy
mom to michael 4 years old. dx 4-6-01 ccg-1991
Brandon
Brandon is 5 1/2 dx 9/16/02 with ALL/ Full term, born 8 lbs. 1 oz. pretty healthy outside of ear infections, tubes in 1/31/02 His story begins with a bump on his head in April 2002. It grew slowly, we went to a plastic surgeon to check it out in June, and scheduled surgery for removal. No tests were done to find out what it was prior to surgery. The surgeon was not available until August, he said it was no problem to wait, it was a cyst. The same day we saw the surgeon, Brandon complained of leg pain, that went on for 3 days until he asked me to call the Dr. I carried him in, he was dx with toxoc synovitis, a common viral type that lands in the hips. Complete Bed rest for 4 days and lots of motrin were prescribed. After his bedrest, he was fine. Later that week (in June)his bump started gong away, looked as if it were breaking apart. It got rough and bumps developed on one side of his neck, same side as his head bump was. The next day, very stiff neck. So, off to Dr. again, bump on head was almost GONE! (it totally disappeared over the next 3 days) Dr. was very puzzled. Id'd 3 swollen nodes on his neck and measured them. Did Tb test etc. Put him on antibiotics and nodes starting going down. We measured them once a week for most of the summer, one would go away, another wouldpop up. My ped was reassuring me that this is not how cancer acts. He also did blood tests that showed no indication of cancer. When we went off antibiotics, nodes would pop up again sometimes within 24 hours. Then he caught some virus with 103 fever for 5 days, and WBC was 2000, he sent us to an ONC, blood tests there had improved over ones 4 days ago. He felt there ws something going on, but not cancer. We were seeing a surgeon to have a node removed to see what it was, but he started having severe hip pain, like before but in other hip. I have never seen him so bad. Dr saw him and sent us down to Children's ER the next day. He was not DX until a bone scan showed high uptake in his marrow which led to a bone marrow asp. which was then conclusive for ALL. Even the ONC docs at Children's did not feel we were an ONC issue. Boy, what a shock for all the docs! Strange, but the hair where his bump was is growing in a brown instead of a light blonde he is. That's our story and we're sticking to it, We've just started Consolidation on CCG 1991.
Cindy Zammit
Maryland
Carter
Thankfully, Carter leukemia presented in a very dramatic way, swelling of the lymph before my very eyes. We went straight to the ped at 2:30pm, he took one look, never mentioned cancer and sent us to do blood work. At 7:30ish he called and said the blood is not right and to go to Children's tonight, they will be expecting you. Carter was diagnosed right after midnight with a wbc of 14,000, we were so lucky that it was caught so early. Needless to say I love my pediatrician. Hindsight is 20/20 but obviously he knew the whole time and did not want to alarm me until he had the blood work back. I was expecting it back the next morning and he had put a rush on it, thank God! Anyway, that is the story in a nut shell.
Carrie James
Carter James 3.5yrs old, dx Pre-B All, 7-31-02, Patrick 1.5yrs old, Eric James husband of six years
Tyler K
I guess it all started about the last week of January 2002. Tyler got real sick the last week of January. He threw up 21 times in one night and was just very lathargic. I took him to his pediatrician and she just said he had the flu. She put him on antibiotics and sent us home. A few days later the illness subsided but Tyler was never the same. He was tired all of the time. Tyler is normally bouncing off of the walls and here is my hiper energetic son asking to take a nap. I knew something was seriously wrong. He also seemed extremely pale to all of us that are closest to him. This went on for about a week and a half and then one day he woke up from his nap crying and complaining of his leg hurting. This is all it took. I guess I was looking for the worst and something was telling me that he had Leukemia. I had done a lot of research on it and he was presenting with more than one of the symptoms. My husband and I took him to the emergency room at Children's Hospital on the night of February 11th, 2002 and I demanded them do a CBC (complete blood count) and CMP(complete metabolic panel). I told them specifically that I wanted him tested for Leukemia. The tests came back and it was verified that he did in fact have Leukemia. They immediately admitted him and scheduled for a bone marrow aspiration the following morning. The results of the BMA came back and verified that Tyler had Early pre-B Cell Acute Lymphoblastic Leukemia (ALL). He was offically diagnosed on February 12th, 2002. He was 3 and a half years old. We were told that the translocation that he has is one of the most treatable. He was started on Chemotherapy that day and was oficially in remission by day seven meaning he was a RER (Rapid Early Responder) which is another good prognostic factor. His doctors are giving him greater than a 90% chance of being cured but as all of the parents of children with Cancer do I find myself seeing that as meaning he has a 5-10% chance of losing this battle. I am gratefull for his good odds but I'm still very scared of the battle that my son is facing because I am aware that there are no guarantees. Tyler never presented with any swolen Lymph Nodes. He also didn't have a swolen liver or spleen. The only symptoms he had was that he was pale, tired and woke up saying his leg hurt. He didn't even have a fever until the day of diagnosis. We were told by Tyler's doctors that if they had checked him just a week earlier they are certain they wouldn't have seen it. We caught it very early and I guess I have God to thank for that because something was telling me that he had Leukemia so it's kinda like I was looking for it. It is now over 8 months since Tyler's diagnosis and he is doing very well. He is strong, energetic, and full of life. He is still in remission which we thank God for everyday. I pray that he will live to be a very old man and that he will be the one to bury me someday.
Written by Jennifer King
(mommy to Tyler Lakota King-4/dx. early pre-B ALL 2-12-02)
Tomas
Tomas Perez is my nephew. Tomas is now 8 years old. He was born on July 4th 1994. He was diagnosed with ALL on June 8, 2001 just weeks shy of his 7th birthday. Tomas was always very healthy, rarely caught anything, hardly ever had a cold.
In April of 2001 Tomas started complaining about pain in his ribs. Tomas has never been very good with pain so we were not sure how bad it was since everything to him is a trauma. He would get pains in his side and actually start hyperventilating and screaming from the pain. Even though we didn't think the pain was actually that bad we were bothered by it's persistence and frequency. He also started running a low grade fever. We went to the doctor and they said virus - give it time.
Two weeks went by and Tomas still had fevers off and on plus intermittent pain. His mother pushed the pediatrician to test him so they sent him in for lots of blood work which all came back negative and the pediatrician still said virus.
His mother became convinced it was his heart so she pushed to see a specialist and got testing done which came back negative. She took him to another hospital for a second opinion on his heart which also came back negative.
At about week 4 the pain spread to include pelvic region and headaches. The strange thing was they were like episodes. Extreme pain for 30 minutes then he'd be okay. The doctors were having trouble because his pediatrician thought it might be mental and he'd never have pain while at the doctors. There was nothing found to explain Tomas' situation and since he didn't have much of a pain threshold they were not sure what to think. They started looking into stress related issues and so forth.
Finally at week seven Tomas and his mother were once again in the ER. This time she was sitting there waiting for him to have an "episode" so the doctors could witness it. They saw the situation and did more blood work with everything turning up normal. One doctor referred Tomas to a specialist because Tomas' sister has IBD and they wanted to test Tomas for it. Luckily a great ER nurse called her husband who is a doctor. The doctor looked over the charts and decided waiting to see the IBD doctor was a waste since they symptoms were wrong and instead he ordered a bone scan.
This was the turning point. During the scan it was obvious something was wrong. Usually bone shows up in xrays as white. In Tomas' case his pelvic bone, scull and ribs were not showing up on the scan - it was all dark in those areas. So he was admitted to Children's hospital.
The doctors told the family on Friday June 8th that they thought Tomas might have Leukemia but they wanted to do a bone marrow aspiration to check, unfortunately nothing could be done over the weekend. But this doctor was so convinced that this was the problem that they started him on some medications to prepare his body for Chemo. On Sunday, Tomas got his first mouth/nose bleed and on Monday his blood tests came back for the first time with abnormalities in the cells. WBC at Dx was 14,000.
The bone marrow check confirmed ALL and Tomas started Chemo immediantely on POG 9904. He is now in the maintenance phase of treatment. He has only had one non-scheduled hospitalization which was for chicken pox. Other than that he has not missed school or been in-patient. He has had a few side effects including trouble with his gait and constipation but they seem to have resolved once he entered maintenance.
Sue
Aunt to Tomas age 8 Dx 6-01 ALL POG 9904
Caleb
Caleb was diagnosed on July 3, 2002 at the age of 4 1/2. He is the youngest of two boys. I had an uneventful pregnancy. He was delivered naturally on his due date and weighed in at 8'6". The beginning of our journey is very vivid, yet parts are a blur too, but here goes. Caleb has rarely been sick up until diagnosis and has probably had two ear infections and strep throat once. On or about June 24th, Caleb began to run a fever. My husband had picked him up from daycare a bit early that day and called to tell me he was running a fever of about 101. He gave him some Tylenol, but by the time I got home, about 2 hours later, his fever had actually gone up. Since we were due to go out of town in a week and it was pretty high, I decided to take him into the ER. When we got to the ER it was packed and I had considered taking him home and waiting until the AM since I was told it was going to be a five hour wait. Turns out it wasn't. While waiting to see a doctor or PA, I felt a large knot on the back of Caleb's neck. Still nothing to get my suspicion up though. We finally saw a young intern or resident. Not sure which to this day. He did a rapid strep test which came back inconclusive. The doctor in charge of the ER came down to talk to us and said that even though the rapid strep was inconclusive, they would do the regular strep culture and someone would call if it turned out to be positive. Strep had hit our household 2 or 3 times earlier in the year, particularly with my other son, and had recently hit a couple of kids in the daycare where Caleb attended. I suspected nothing else as this had happened before. However, since his glands were so swollen he was given a dose of Dexamethosone in the ER to reduce the swelling and an antibiotic. We were given the choice of a shot or the oral. Caleb just went ape when the doctor mentioned the shot so I opted for the oral. Off we went home. By the next morning, he was fine. He seemed pretty normal the remainder of the week and on Sunday, July 30th, we headed out of town (Tacoma, WA) to Crater Lake National Park in S. Oregon which was to be the start of a two week vacation. Shortly after arriving at our camp site, Caleb fell while playing with his bother and hit the side of his head on an exposed root. It produced an ugly bruise, but appeared to have no other side effects and I took the necessary precautions for a head injury. The next day, we set out to do a short 1 mile easy hike and he cried and complained the whole time. We went back to the campsite so he could lay down and my husband and our older son, Jared, went out to do some things. This continued the next day, Tuesday. Caleb was just content to lay in the tent or sit in his chair and play his Gameboy. He never complained of anything hurting. He just said he was tired. I had already scheduled a follow-up visit for him once we returned from vacation as I thought he might be anemic due to a couple of noise bleeds he had and then with the recent bruise. Again, I did not suspect anything as I had been anemic as a child and my oldest sister was as well. Later that Tuesday, July 2nd, Caleb also started running a low temperature after taking a nap and he also had 2 bruises right in the middle of his forehead about the size of mosquito bites. Since we were out of town, I contacted our insurance to find out where I should take Caleb should the need arise.
On Wednesday, July 3, 2002, he got up and seemed to feel fine. Ate breakfast and we decided to head towards N. California and do some riding around. This went okay. On our way back towards the campsite, he complained of being tired and feel asleep only to wake with a temperature. I knew something was up and this was definitely not right. We headed straight for the ER in Klamath Falls, Oregon. There, they thought he probably had mono. After taking blood, they came back for more. We were then sent for x-rays. While I was in radiology, the results had come back that Caleb had leukemia. The doctor had already informed my husband. When I returned from radiology with Caleb, my husband, the ER doctor and I went into the doctor's lounge where I was told. This was July 3, 2002 in the early evening. A day, like all of us with cancer kids, that will never be forgotten. The doctors weren't sure, but they thought it was ALL, but a bone marrow biopsy would be needed to confirm this. However, I was told if he had to get leukemia, this was the "good one". His spleen and heart were enlarged and his HCT was a 9. The hours immediately after that point are somewhat of a blur except that everyone in and out of Caleb's room was required to where protective clothing and masks and arrangements were being made to have him flown to Children's Hospital in Seattle. At the time, it was not known if I would even be able to fly with him due to space and weight concerns and the type of craft involved was not know. Here I was a total wreck and then I'm told I might not even be able to go with him. Plus, I remember having to sign consent form with regard to the plane crashing. It was an absolute nightmare. Not what you want to hear. Seattle was a 9 to 10 hour drive. This was almost too much. Turns out, I was able to fly with him to Seattle. I had not been in a plane in almost 10 years and I had never been in one that small. Flying is not my strong point. While I was able to fly to Seattle with Caleb, my husband and Jared had to drive the hour back to our campsite, break down the camp, load the truck and drive the 9 hours back to Tacoma with little to no cell phone coverage for us to be in contact with each other on what was going on. My husband is in the Army and stationed at Ft. Lewis. We have no family in the area so I also had to think about my older son. Caleb and I made it to Seattle in the wee hours of July 4th. While Caleb's consition was very serious, the decision was made not to put him in ICU at that point. I was able to speak to a pediatric oncologist within an hour of arrival and was calmed somewhat by the information I was given on ALL. A spinal and bone marrow biopsy was scheduled for two days later wherein it was confirmed he had ALL, t-cell though. Fortunately, he did not have any blasts in his CNS and his WBC was considered good. He also did not have a medistinal mass which is common, I'm told, in t-cell ALL. The first few days were the worse as he ran a very high fever which caused him to hallucinate and have terrible nightmares. He received four units of blood over the course of the first two days. He then received his first dose of Vincristine on July 6, 2002 and was started on Decamethasone.
Caleb was hospitalized at Children's until July 8th when he was transferred to Madigan Army Medical Center here in Tacoma. Madigan is the regional medical center for the armed forces and often receives children from Alaska, other western states, and Korea whose children require specialized medical care not available and the parent's duty station. He spent a total of two weeks inpatient and was in remission by day 14. He was again hospitalized on July 31st when he had his port-a-cath put in. He was not scheduled to have the port implanted until the end of August. He had a PICC line, but his PICC line failed and he was due his Vincristine. They couldn't get an IV in place either as his veins would collapse each time. So, he was given a high priority for the port-a-cath. He had some minor problems with that surgery. The doctor had difficulty in getting the tube to feed through his veins and he bled a good bit so we stayed overnight so he could be monitored. Caleb is following CCG-1991 although he is not on study due to the fact that he received the Dexamethasone in the ER room. His WBC was "good", although this true WBC will never be known due to the steroids he received. After diagnosis and the initial shock wears off, you stop and think a little, everything starts adding up; the fevers, nose bleeds and laying around.
Caleb is doing well and having very little side effects from treatment. We are scheduled to start Delayed Intensification on or about October 29th. So far, we've had no delays due to low counts and no F&N. We can only hope and pray this continues. He started a Pre-K program part-time in mid-September. He is very active, but does tire easily. Up until the time Caleb was diagnosed, I had never known or met anyone with leukemia...now I know of way to many.
Deborah,
mom to Caleb, 5, dx 7/3/02, t-cell ALL, CCG-1991, and Jared, 7 1/2 (8 next month),
wife to Wil for 13+ years
Clare
Clare woke up on Thursday, November 29, 2001, complaining of a headache, and feeling tired even though she had slept soundly the night before. Clare, a healthy 3 year old, had never complained of a headache before. She was tired and lethargic, then took a very uncharacteristic morning nap. I knew that there were several cases of strep in her nursery school, so I took Clare and her sister to the pediatrician’s for strep tests that afternoon.
While at the doctor’s, I asked them to test Clare for anemia. My husband’s father, a retired doctor, had mentioned the week before that Clare seemed pale. He told us we should get her checked for anemia. The nurse practitioner agreed that Clare was very pale, and mentioned that her abdomen seemed hard and distended.
They took a finger prick’s worth of blood, and tested it several times in the pediatrician’s office. Unbeknownst to us, our favorite doctor at the practice had trained in hematology/oncology, and she read the bad news on the slide. She sent us straight to Children’s Hospital with instructions not to sit in the ER waiting room, but to be isolated in an exam room right away.
After 4 hours in an ER exam room and a truly harrowing IV blood draw, the attending ER physician gave us a diagnosis of leukemia that was confirmed by a bone marrow aspiration the next day. Clare’s official diagnosis was pre-B cell acute lymphoblastic leukemia. Clare had a Broviac central line put in two days after diagnosis. She began treatment on the Children’s Cancer Group 1991 protocol on December 1, 2001. Clare has tolerated her first year of treatment extremely well, and we look forward to her being off-treatment by Summer 2004.
Karen, mom to Clare, 4 years old, and treated at Children's National Medical Center in Washington, DC and Rockville, Maryland.
Austin
Our A.L.L experience began like most others. Austin started out running a temp and complaining of a sore "neck". We took him to the doctor and found out he had strep. No big deal... he got a shot of penicillin and we were on our way. He should be better in 24 hours. Well, those high temps continued. I was worried because not Tylenol plus Motrin, or a cool bath would break the fever. The docs kept telling us it was the flu, ride it out. Now, along with the fever, Austin was difficult to wake up and pale. He wasn't eating or drinking much at all. We took Austin in again, asking for a blood test this time (do something, please!). Not knowing what else to think, we suspected he had mono. Then the CBC came back... we saw all of Austin's blood counts were dangerously low. "Something" was stopping his body from producing healthy blood cells. The doctors stopped treating me like I was over-reacting rather quickly. They were actually worried that Austin would go into shock because his hemobglobin was only 4.3. The doctor called up an ambulance to take us to the University of Minnesota, to the experts, to find out what was going on. At the University, after almost 2 days of blood testing, spinal taps, X-rays, blood transfusions and bone marrow biopsies we found out what was wrong. I thought it was a mistake... how in the world could Austin, who had been perfectly healthy all his life, have cancer? Our Oncologist told us in the beginning that A.L.L can be very treatable and Austin is at just the right age to treat it best. The protocol we are on (CCG-1991) has a 85% plus cure rate. We hang onto those words!
This all took place over one week. Looking back real hard those two months before diagnosis, I can see other signs that something was not right. Austin was sleeping more, he was pale, not running around like he used to. That something so serious was going on in his body and I had no idea- breaks my heart. Austin is doing great and we've adapted well to the treatment routine.
-Sara-
Austin was diagnosed 4/10/01 with Pre-B A.L.L
Will be done with treatment June 2004
Chloe
This is Chloe Allemang's story.
Chloe is our sixth child born on Labor Day of 2000. She had been healthy and
active until April of 2002. She was 19 months old when she began to have
some swelling around her eyes and temples. I noticed it immediately but
waited several days thinking it would go away. Soon after it started we were
out for a walk in our neighborhood and stopped at a friend's house that is a
surgery resident. It was dusk and we were chatting on his porch when I asked
him about the swelling. He thought it was probably allergies so I wasn't too
alarmed but kept an eye on her. A week or so later my husband was taking one
of our other children to our family doctor and I had him take Chloe along to
ask about the swelling, as it was getting worse. He also thought it was
allergies. I tried giving her allergy medicine but it didn't have any
effect.
When the swelling only worsened I took her back to our family doctor. This
time he seemed alarmed and said, "I've never seen anything like that in 25
years!" He immediately sent us to the only ENT doctor in our town. He also
was baffled and put her on 10 days of antibiotics and prednisone. The
swelling went down slightly but came right back after she went off the
prednisone. The ENT then ordered a CT scan. I remember asking him on the
phone if we shouldn't do some blood work first since we would have to put
her under general anesthesia to do the CT. He responded by saying that at
that point he wouldn't know what to look for if they did blood work. We did
the CT scan on a Friday morning. He called me Friday afternoon and said that
the results were normal and that it was probably just "fatty tissue" and to
"ignore the symptoms for a while".
The week before, my 8 year old son had gotten tubes in his ears by this same
doctor. On a follow up visit to have his ears checked, I took Chloe with me.
The swelling had gotten so much worse and she wasn't eating either. Her left
eye was bulging out and she couldn't breathe through her nose at all. When
the doctor came in and asked how my son was doing, I said, "He's fine, but
look at her!" He made an appointment for us to go to an allergist in another
city. The soonest we could get in with this doctor was two weeks from then.
I knew we couldn't wait that long.
At church the following Sunday I approached a man I knew to be a
pediatrician (our insurance plan doesn't have any "in network" pediatricians
in our town). I asked him what he thought about Chloe and told him we were
supposed to see an allergist. He took one look at her and said matter
of-factly, "That's not allergies." He came to our house that evening to get
a urine sample from her. After testing it the next day and finding it
normal, he called us to bring her in to get blood. When he got the results
back on Tuesday, he called and said he was concerned. He arranged for her to
be seen at the University of Missouri Hospital in Columbia the next day.
There must have been a dozen or more doctors in and out of her hospital room
that Wednesday. They took lots of blood and ran lots of tests. We didn't
know who was who or who was in charge. On top of it all, I was six months
pregnant with our 7th child and having a lot of pain apparently from getting
somewhat dehydrated.
We finally met with one of the doctors who seemed to be in charge. I didn't
even know his name at the time. He mentioned three possible diagnoses. I had
never heard of two of them but I did recognize the third..."leukemia".
Because of the 10 days of prednisone that she had been on, it made nailing
down the diagnosis difficult.
By Thursday morning they were sure it was ALL but unsure about whether it
was B-cell or T-cell. A resident friend of ours was doing a rotation there
at the time and had explained to me briefly the differences between B-cell
and T-cell. I made up my mind at that point that I "preferred" B-cell and
that's what it surely must be in Chloe's case.
It was Thursday evening when we had the conference with the doctor, resident
and nurse that remains painfully etched in my memory. In his foreign accent,
the oncologist carefully began explaining ALL and the differences between B
and T-cell. I remember thinking, "This is taking way too long. It can't be
good news." Sure enough, he finally got around to telling us that she had
T-cell Acute Lymphoblastic Leukemia. She is only the second child under age
2 that he has seen with T-cell. He then began outlining her treatment
protocol. It seemed to me at the time that the treatment rivaled the disease
in possible devastating effects. When he described the probable effects of
cranial radiation because of her age, it was too much for me. Tears streamed
down my face as I sat silent, inwardly fighting for composure. Our sweet
nurse pushed a box of tissue across the table. I couldn't even say "Thank
you" for fear of completely breaking down if I tried to speak.
I thought surely this was a bad dream and I would awaken any moment. I
always awoke at the right time when bad things were about to happen to my
children. But this time the story was out of even my subconscious control.
Much of her story is still out of my control, too much for comfort. But I'm
learning to trust God with the rest of it and believe in my heart it will be
a happy ending.
Hillary
November 7, 2001 began just like what we thought was any other day. We got up, got Hillary and Samuel off to school and Mark and I to work. Hillary had a doctor's appointment for after school just because she had occasionally run a temperature of about 99 - 100 degrees for about 2 1/2 weeks. (Under 100.4 is not even considered a fever!) During this time, Hillary had been feeling well. She was often tired - but she was playing soccer 3 times a week! When she saw Dr. Metzger, he checked her hemoglobin because she was pale - it was 5.7! Normal is 12-14. He sent us to the ER at Scottish Rite. I didn't ask him very many questions at that time because I had a terrible feeling in my stomach. It wasn't long after Hillary's blood work that we were told the devastating news - that she had cancer. I can't explain the emotions that we all felt and still feel. But, we are fighting this cancer and we are determined to win the fight, with God by our side, and continued prayers from us and from you.
Hillary is such a trooper. Chemotherapy has been difficult for her, but she has kept her faith and fights hard. She is on an intense high risk protocol for treatment for the next 2 1/2 years. She hasn't been able to go back to school yet. We are not yet sure when since chemo affects every child differently.
Hillary just turned 11 on Christmas Day! We think she is so special to be able to share the same birthday with Jesus Christ. We are so thankful that Hillary accepted Christ as her Saviour on Sept. 30, 2001. She has kept her faith through this - she reads her Bible and prays hard. We believe that God has BIG plans in store for her!
For those of you who don't know Hillary well, let us tell you about her. She is an excellent student at school and in the gifted program. She loves to read, play her Gameboy Advance, and ride her scooter. She also plays softball and soccer. She loves to play with her friends. She is active at church and loves the Lord with all her heart. We are so proud of her.
Sincerely, Cindy & Mark
Chad
Chad was born on Nov. 13th, 1991 @ 9 lbs. 13 oz, he was right on time, and was the second child born into our family. He was late in most things, crawling, teething, walking and talking. At age 5, we were told he needed an IEP for his schooling, he was behind on Language and Speech. In July of 2001, my husband and I had to return home from our vacation because Chad was sick. After comeing home, we found our son, listless, and very weak. We took him to the doctors that next morning and were told, with no blood work done, that he had a virus and gave us some meds. A week later after finding him on the basement floor unable to walk and in pain with his legs, we took him to our local E.R. This doctor wouldn't even look at Chad, this is no joke either. This doctor pulled us out of the room and said Chad is faking his ailment and to have him seen by a psyc. We were soooo mad. That next morning we took him to his ped. Doctor again. She did blood work and a full exam and x-rays. She said it is a virus and most likely growing pains! Two days later, I took him in again to his ped. Doctor. This time, she brought in another ped doctor and they ran an HIV test and said they feel he had HIV/AIDS!!! We were numb and shocked. They sent us home that morning with a cup for a urnie test and were told to bring it in when he pee's at home. SOOO, that afternoon at three on the 3rd of August, 2001 I took one of my sons' and was dropping off this urine sample at the lab department when they said to go to the ped. office in the back room. There was a nurse in the hall way waiting for me and took us in a room and said the doctor would be with us shortly. We waited close to 30 minutes and I was ready to walk out cause I new chad was home very ill and needing me. I grabbed the door to leave the room when those two ped doctors came in and said to sit down. They had papers in their hands and I seen the one it had Doernbechers Childrens Hospital lable on it and I about passed out. They said it is Leukemia and the Onco Doc from Doernbechers would be calling at 5 to talk to us about chad and getting him there in the morning. It was the most horrible thing in the world that day, hearing those words.
I don't know how I drove back home, or anything. I remember Chad cring in his room when I got home and my husband laying next to him on his bedroom floor. I just stood there and fainted!
The whole family prayed the intire night that night. We entered a new world the next morning as we left with our son to Doernbechers. It was a wirl wind of events that went from this info to that, to finding the counts, to booklets of infor, to surgery dates, x-rays, chemo, and finding mass in his chest, to his testicles and spinal fluid being full of blasts. He has indured Irradiation to his testies and brain, has had so many side effects. He is at a 1st grade level now, and mind you he just started 5th grade. He is so far behind now, and has missed so much school. But we have come to accept the fact, we are so proud of Chad and so gratefull to have him in our lives, it just don't matter where he is standing in school, cause he is still in remission and fighting a battle of his life and winning.
Jeannie and Shawn
parents to Chad Dx 8-03-01 t-cell ALL
Samantha
Samantha was diagnosed when she was 6 years old.
One night while in the bath tub, I noticed a bump on her labia. I thought it was a bug bite. When I got her out of the tub and dried her off, I touched the bump. It was about the size of a pea and hard like a marble.
Next morning I called the Pediatrician's office, and they told us to come in right away so they could look at it. Once at the doctor's office, two of the Peds looked at the bump, and decided the best thing would be to send her to the Pediatric Surgeon's office, and they called over to the Surgeon's office and got us appointment that same morning.
Once we were at the surgeon's office, he looked at it and said he would like for to have an ultrasound of the area. His nurse called the radiology dept of the hospital and we went over and had the ultrasound done. The results came back inconclusive, and the next step on the advise of the surgeon was to do exploratory surgery (this is still the same day). He scheduled the surgery for 3pm and told us it would take about an hour.
Once the surgery was over with, we met with the surgeon and he told us he had found an infected lymph node and that he sent it off to pathology for further examination and would have the results the next day (Saturday). Needless to say the rest is history. The lymph node was malignant. Monday we met with the Ped. Oncology - they arranged for her to be admitted on Tuesday of the following week, she had a BMA to determine if it was Lymphoma or ALL. She received her Port on Wednesday and also started chemo that very day.
Marlene, mom to Samantha 11, Pre B ALL, POG 9201 5/97, OT 11/99, declared Cancer Survivor 7/02, Pembroke Pines, FL - treated at Joe DiMaggio Childrens Hospital.
Robert James
Robert James was born June 5th 1986....a healthy beautiful baby....and such a loving child always happy and full of energy! James was the oldest of our three grandchildren. In the short 14 and a half years of his life he brought so much joy and love into our lives. Like his father he never met a stranger. James was so full of life and loved living it. When he was diagnosed with t-cell high risk Acute Lymphoblastic Leukemia 12/15/98 (a day before his dad's birthday) he was determined not to let this disease win.
James was 12 and a half and him and his brother and sister were spending the weekend before Christmas with us (the usual) that was our time to do decorating, baking cookies, putting Christmas lights up outside at grandma's house.
I noticed he was extra quiet that weekend and looking thin....I chalked it up to "Wow he is growing up, he is becoming grandma's little man now, six months from becoming a teen."
When his dad and mom came on Sunday to pick the kids up, they were not home hardly anytime when my phone rang. It was my son upset telling me James showed him a lump around his collar bone. My daughter in law and I took him to the ER that night and we were told "Oh it just a cyst." James went to his family doctor the next morning and late that evening the office called, his blood work showed blasts so he was admitted to Children's Hospital for a Bone Marrow test.
Not in a million years would we have ever thought the doctor would set us down and tell us the news "James has Leukemia!" James endured the next two years of pain and suffering from so very many spinals, bone marrow biopsies, fluid build up in his hips, and trips to the ER every time he got a fever, stays in PICU......etc. Four months after diagnosis he had his heart operated on for Wolf Parkinson White. He had to have a port.....then later he had a broviac. He had to give up sports, swimming, and there were many days he could not ride his bike, have his buddies over, go to school, go out to stores...etc...because of low counts.
It robbed him of his childhood....and then it took his life on 12/19/00.
He fought two hard years with such force and determination......He is now and always will be someone I look up to because all through this, a few hours before he passed he was praying to God "not once asking anything for himself" but asking God to help all the sick kids in the hospital, and for family and friends health and care. I listen to that prayer and would have thought he was going to ask God to take his pain away...but he only ask for others. James was the kid in the neighborhood if you needed your lawn mowed, your car worked on, or just general things to be done....he was there giving a helping hand. He walked 3 miles last year for the Leukemia and Lymphoma Society.....three months before he became an Angel.
He will always be our "Hero and Warrior of Life"
James story was submitted by his Grandmother,
Bonnie
Amanda
Amanda was born 9/9/90. She had a normal delivery. She had the normal
childhood illnesses. In the beginning months of 2002 she started losing
weight. However, she was a large girl for her age of 11. In May it was
time for a school/camp physical. I was a bit concerned that she might have
anemia, because she seemed so tired lately and looked pale, even for a red
head. She did have some bruises on her legs, but thought that was from her
playing softball. On physical examination everything was fine. I requested
if a hemoglobin could be checked to check for anemia. A finger stick was
done. I'm not sure what the actual count was, but the doctor decided that
she should come back the next day for a CBC. She had that drawn at 7:30
a.m. on 5/10/02. I remember her asking if she could stay home from school
that day because she had to have lab work done. Off to school she went.
Around 12:15 I received a call from the doctor himself stating that her
white count was up somewhat (18,000) and it looks like there are some
immature cells. He said she would need to go to the children's hospital for
further evaluation. I thought fine, that will probably be at least a 2-3
week wait. Around 12:30 received a call from the hospital stating Amanda
needs to be seen ASAP and to make sure a bag is packed for the possibility
of an admission, At that point I literally lost it and had to hand the
phone over to my husband to complete the call. It was the longest ride to
the hospital. Amanda of course questioned why she needed to go right away
to the hospital. We just said more testing needed to be done. She thought
it was fun missing school.
Upon arrival we were told that a bone marrow aspiration needed to be done so
they could determine if she had leukemia or not. She was diagnosed with
high risk ALL will CNS involvement and is on the 1961 arm D protocol.
galer@ptd.net
Carly
dx 11/7/00 CCG-1991 arm B
My daughter, Carly, age 7 at the time, suddenly started having bouts of intense leg pain in the fall of 2000. She would wake up in the night and need a warm bath, whimpering and shaking. This was a child who never got sick, nor complained. She would hyperventilate in pain. The first time it happened, at the end of September, I gave her Motrin and a bath and it passed by morning. About 10 days later, it happened again but lasted into the day. I was able to get her into the doctor so she could "see" the symptoms. This time, Carly also had stomach pain. The doctor told me it was a stomach virus with "referred pain to the legs." This did not sound right to me, but I always trusted doctors.
As October unfolded, Carly kept getting more symptoms that I could not explain - fevers that would come and go, these bouts of leg pain, even throwing up. During another "pain episode" I took her back to the doctor and this time they did blood work and sent her for a leg x-ray. Of course the x-ray showed nothing, and the blood work was misread. They only told me that she was anemic and that she could not have leukemia because she was not bruising and her platelets were fine. They said if she was still symptomatic in 2 weeks to bring her back to retest the blood, and to schedule an abdominal ultrasound.
By this time, I was so worried that I walked around feeling jittery all the time. Although Carly was functioning, I knew something terrible was wrong. She would get up, throw up, take Motrin and then go off to school. She was so pale and was wasting away in front of us. I was spending time on the Internet, researching everything except leukemia since I was told it could not be. I decided that she had juvenile rheumatoid arthritis. I remember calling the doctor's voice mail frequently just to tell her that Carly's symptoms were continuing.
I remember on Halloween, Carly got up, threw up, and went about the rest of the day. Although she then had a good day, I remember taking a picture of my kids in their costumes and wondering if Carly would be with us the next Halloween. Then, I told myself that I was being overly dramatic. I mean, she was functioning and the doctor said she was fine. But my mother's instincts were in full operation - I was just denying them because the doctor kept telling me not to worry.
By the time 2 more weeks had passed and Carly was "allowed" to go for another blood test, I was really scared. I brought with me a three-page document I had printed out, called "Carly's symptoms" where I documented everything that had been happening. I handed it to her doctor passing in the hallway and begged her to read it.
That night, the doctor called and told me she understood my frustration. I told her I was not frustrated, I was scared to death. She told me that although she could not tell me what was wrong with Carly, she could tell me that it was nothing "life threatening" and that the blood work would be back in a couple of days.
The next morning was November 7, 2000 - Election Day. I got the kids off to school - Carly actually looked OK that day. I went to vote and then to the grocery store. I was feeling shaky and reluctant to go to work. I checked my messages in the grocery line - 8:45 am - it was the doctor telling me to call immediately.
From my car, I called the doctor's office. They put the doctor directly on. She told me that Carly's blood work looked really bad - "Not inconsistent with cancer" and told me to get her to Children's Hospital of Philadelphia and to bring my husband too since there was likely to be bad news. We were so scared, but trying to hold it together for Carly.
When Carly was diagnosed with acute lymphoblastic leukemia later that day, I remember that on top of the shock, I was feeling almost relieved that we could now start her on the road to health. I KNEW that something was terribly wrong, and now we could fight back. I wished I had allowed my instincts to have a little more room in my brain - I would have taken her to Children's Hospital weeks before.
The leg pain - that was her bone marrow, packed with leukemic cells. At diagnosis, her marrow was 96% packed. On day 7, she still had almost 60% leukemia present in her marrow. Miraculously, the day 14 marrow showed less than 5%.
Her other symptoms were classic leukemia symptomolgy - bone pain, fatigue, anemia. The fact that she functioned so well under these circumstances is a tribute to her strength and determination - something I was to find out as we witnessed her handle with grace her difficult chemotherapy treatments.
Alexis
Alexis was staying at her Grandparents' house while I ran errands. She was
there about 2 hours before I returned to pick her up. When I got there, my
mom told me she was asleep and had been asleep since I left to run errands.
I knew right away something was wrong, Lexi has borderline insomnia and no
way would she be asleep at this time. When I went into the room to get her,
she was laying on the bed, face down. I rubbed her back to wake her up and
all she could do was moan...she couldn't wake up. I grabbed her in my arms,
fully alarmed, and took off for the local ER about a block away. This ER
was more of a first aid station, since we live in the country and the
hospital was used mostly as a home for the elderly. When I arrived at the
hospital, I thought perhaps Lexi might have eaten something like a "sleeping
pill" (which my dad keeps over the counter sleep aids by his bed). An hour
and a half later a doctor arrived to help us. By that time, Lexi had no
symptoms other than nausea. The doctor shrugged it off as a virus. Later
that day, my Dad brought my Mom into the ER. My mom knew by then that it
was Carbon Monoxide. They were all poisoned and are all lucky to live to
tell about it.
The following week, Lexi wanted to sleep every 2 hours. This was not right.
I thought she must still be poisoned by the carbon monoxide, although the
likelyhood of that was nil, there had to be some explanation for this
tiredness. I called our family doctor, who had us come in for blood
tests...he sort of laughed at me because I thought there was still something
wrong from the carbon monoxide poisoning. He humored me and took a blood
test. The results alarmed him so he called a pediatrician in the nearest
city. The pediatrician recommended we come back in 24 hours for another
blood test. We came back the next day, no change...all counts were
extremely low. My doctor reassured me that it couldn't be Leukemia since
all the counts were low. He called the pediatrician who immediately
referred him to the nearest children's cancer clinic. In the meantime we
were going to do some shopping at the local store and then drive back home
which was 15 miles in the country. Before we left the store, we heard a
page for us to go to the front desk. The lady told us that our Dr. had
called and wanted us to go immediately to his office. We dropped everything
and left. I knew then that my little girl's life was in danger.
The doctor told us what had occurred between him and the pediatrician and
the oncologist. We were to go to the oncologist the next day as early as
possible. He told us that the oncologist was going to call us, but he
wanted to tell us first so we wouldn't panic (wierd logic).
The next day we were doing a BMA, which I held my baby while they did it. I
was so sick and shocked from the procedure. They did the analysis
immediately while we waited. At 12:30 pm that day my world as I knew it
ended. Alexis indeed had Leukemia. We were told it would take a couple of
days to find out the type, whether it was a cureable form, or not. I kept
my composure for my daughter while inside I was falling apart. As soon as
she was awake from the ketamine, I had daddy stay with her a minute while I
left. I was so sick. I went to my vehicle and cried and begged God to let
me keep my baby. I did more than cry....my soul wrenched with pain. I
begged God to let me die too if he had to take my baby. When I returned to
the hospital...a nurse was in the hallway and saw me walk in. She came to
me, and hugged me while I fell apart again. I don't know where she came
from, and I never saw her again.
We were admitted to the ICU ward by 4pm and preparations were being made for
her to receive her central line at 6am the next morning and to immediately
begin chemo. We were seen by dozens of doctors, nurses, therapists, child
life, social workers...I was in a different world and I had all these people
coming in the room to educate me on how to do this, how to feed her, what
signs to look for from the chemo and on and on. My brain was overloaded, my
stomach was sick, I suddenly felt the survival of my child rested on MY
shoulders...I had to learn...I had to remember everything....I couldn't make
a mistake...Dearest God, please don't let me fail. Please let me remember
everything I must do.
Lexi had more pokes and tests all day long and into the night. She cried
and sobbed for me...I couldn't hold her until they were through. She
learned to not trust ANYONE that walked through that door. She would fall
asleep, and the door would creak, immediately she was screaming MOMMY,
MOMMY!! Oh Baby, If only I could do this for you....If only God could give
ME this disease and let you be healthy. My body aged 10 years in one night.
No sleep for 3 days straight. Blood tests, Chemo shots, Oral Dex which she
threw up...so the nurses told me it was MY responsibility to get the meds to
stay down. Dear God, Please tell me what to do? My baby will die if I
don't figure this out.....
Now a year later....I can do anything. I would do the LP's if someone would
train me. Because I know that I would do them better than anyone else could
ever do for my little girl. God has blessed us with strength and many
people to help. Caring nurses, caring doctors, neighbors, family. Thank
You God. I owe you my life.
Karen
mom to Alexis 3yrs ALL B CCG-1991. On our way to the hospital for a
port a cath tomorrow.
Linus
In May 2001 Linus was sick. He did have a low fever, but his biggest
symptom was a fussiness, a long-lasting low-intensity crying that was only
soothed by being carried on long walks through the neighborhood. Our
pediatrician said those common words, "Probably a virus." I had had a
friend whose daughter had a Wilm's tumor, and I asked if it could be
something scary like that. He said, "Hmmm. Leukemia could present this
way. BUT, the odds of that are 30,000 to 1. Just watch it and call next
week if it continues."
It continued.
Ten days later we went for a blood test (Linus HATED that), and the next
day when I was at work my husband called to say the pediatrician wanted the
blood test repeated because the white blood count was unusually high. It
sounds dramatic to say, but this news filled me with a very physical fear:
my blood ran cold, I got a lump in my throat, my legs felt weak.
I got on the internet and typed in "high white blood count" and got some
mentions of leukemia. I didn't know what leukemia was, except that it was
BAD. I thought I'd read a book about someone with leukemia, who died in
the end.
I was able to leave work early and in the afternoon I got the call that was
not really a surprise. The results of the second blood draw were in, and I
should pack an overnight suitcase and take Linus to the hospital right now.
It was helpful that the pediatrician was very specific: bring a toothbrush.
Drive very carefully on the way over.
Linus and I went to a room that still gives me the creeps when we use it
for our clinic visits. The pediatric oncologist was expecting us. He said
the word cancer. He said some other things, like that maybe it was just
mono. It was a holiday weekend and the specialized lab workers were
already gone, so they admitted us on a Friday but kept us waiting until
Tuesday to get the final diagnosis and begin treatment. I was worried that
we were letting so much time slip by, but the oncologist explained that
leukemia isn't really like other cancers, getting more serious with time.
Indeed, Linus' white blood count did not grow into the high risk category.
In hindsight there were other diagnosis signs we missed. He was pale, he
did have bruises and the little red freckles called petechiae.
Terry
Mom of Linus (Big 4 year old now!) dx 5/01 pre-b ALL standard risk, POG 9905d.
Mom of Henry (6yo). Wife of David. Reference librarian.
Tommy
This is Tommy Gresham's Story. Tommy was born on Aug. 7, 1996 after 27 1/2 hours of labor. He had the cord wrapped around his neck. But luckily he was fine. He had the normal ear infections and colds over the next four years. On Memorial Weekend 2001 Tommy was outside playing with his brother, Matthew and a friend. Billy and I were in the house getting the nursery ready for our new baby. When Tommy coming running inthe house screaming my stomach hurts, he drink some milk and layed down and went to sleep for about two hours. About 1 1/2 week later after I had gave birth to Emily, Tommy and his brother came to the hospital to see Me and Emily. Tommy started complaining and crying his stomach hurt again. Billy took him so the van and Tommy collapsed in the van. Billy's cousin took him home and he seem to be fine. We wanted him seen but with me in the hospital having just had Emily it was hard to do. So about 1 1/2 week went by and Tommy had no more aches. So him and Matthew went to Myrtle Beach with there grandparents. Tommy had two stomach attacks down there. So they came back early. I took Tommy into his peditrician on 6-20-01. He seen how pale Tommy looked. There was no red in his eyes and his lips were gray. He felt around and decided to have some blood test done. He did not want to tell me what he suspected. So we went to the lab around 4:00 p.m. and then home to cook dinner. About 7:15 p.m. we had just sat down to eat and Tommy and Emily were asleep when the phone rang and it was Dr. Jackson. He said that we needed to take Tommy over to the Children's Hospital at MCG in Augusta, Ga. About 15 to 20miles away. He said Tommy was extremely anemic and his iron was dangerously low. I asked if we could wait until the next morning since Tommy was asleep and he said NO!!! You have 1 hour to get him there and they have a room ready for him. So we packed Matthew and Emily a bag took them to Billy's parents and packed us a bag and went to the CMC. On the way we called some family members and our preacher. About 11:00 p.m. our preacher came in and then Dr. Sabio came in and he told us that they suspected that Tommy had Leukemia. WE felt like our hearts broke into a million pieces. How could God give us a healthy beautiful baby girl just 12 days ago and then know want to take our precious boy away? His said they would have to start a blood transfusion to night because Tommy's iron was so low. His iron was 4. (Normal is 12 to 14. It took them almost 2 hours to get a IV in him. Everytime they would start his veins would collapse. I just held him and prayed God please let this work. They said he should not have been able to play at all. But he had been. So then on 6-21-01 that morning they took him down for a BMA. About 6:05 p.m. that evening Dr. Suh came in and took me and Billy down the hall. He told us Tommy had Acute Lymphoblastic Leukemia and he has a 80% chance of making it. They wanted to start chemo right away. And the next morning Tommy would have surgery to have a port-a-cath placed in his chest to receive his medicine and also have a spinal tap. He was in the hospital for 1 week. Tommy was placed on protocol CCG-1991 which consists of 3 years and 2 months of chemo treatments. We are know 1 year and 4 months into treatment and Tommy has had 6 red blood cell transfusions, 2 platelets transfusions. He has been in the hospital 4 times for fever, stomach virus or ear infections. God has trully blessed us with three beautiful children. And we know that he will take care of Tommy. With God we can endure all things.
Kori
My daughter Kori was born on 06/13/92. 8 pounds 6 ounces and born via C-
section. She was seldom ever sick. A bout of croup every now and then was
about all we had to contend with. In January of 2000, a note was sent home
from school asking parents to check their children for head lice. There seemed
to be an out break of it at school. I had Kori who was 7 1/2 at the time come
sit on my lap so I check her head. Every Lymph gland in the back of her head,
behind her ears, down her throat, was swollen and felt like someone had placed
peas under her skin. Immediately my stomach siezed up. I knew that this was
not right. (Kori's father and I had gone through a divorce shortly before all
of this, so some of her tiredness and somberness I thought was a result of
this. Her lack of appetite I wrote off to be depressed. The bruises were not
too bad. Nothing out of the norm at this point. She complained of pains in
her shins, but I wrote them off as growing pains because they came and went.)
The next day we were in the pediatricians office. He tested her for strep and
it came back possitive. I insisted that he do a CBC. She was slighlty anemic,
but all of her other counts looked fine. He asked us to come back in 2 weeks
to do a repeat of the CBC. I knew in my heart that things werent right. Two
weeks later when the CBC was repeated, I received a call at 6:00PM that
evening, Febuary 3rd 2000 that would change our life forever. He strongly felt
that Kori had Leukemia and had made us an appoint with a PED ONC for the next
morning.
That next morning we met a wonderful man who would help to save our daughter
life. After watching in horror as they were doing Bone marrow aspirations and
blood draws to confirm everything. Kori was diagnosed with PreB ALL. I will
never forget the pain, fear and confusion in her eyes while all of this was
going on. And reliving it all again when we had to tell her what was going on.
It is amazing how fast ones life can change. And how we as parents can become
educated in the field of medicine when we were barely able to make it through
alegebra in high school. People approach us and say "I dont know how you do
it". And with each and every one of us it is not a choice we make. It is just
something that we do. It is the job that comes with being a parent.
Kori is now 10 1/2. She is 6 months out of treatment. And good lord willing
will continue to do well. There are times when I reflect back to those first
few days and that knot reappears in my stomach that I try to forget about. And
it comes back with each story that is told. It comes back with each child that
becomes and angel. I long for the days when Kori can be tired because she is a
busy kid and not have to worry that it is a relapse. Or that the bruises she
has on her leg are because she was kicked playing soccer and nothing else.
Poor kid. I know I drive her nuts at times asking her a hundred questions when
a bruise appears and she has no idea of where it came from.
Nicki, Mom to Kori, 10 1/2, currently OT and thriving
Melanie
Melanie was born on her due date (2/5/96) with no complications. A healthy 7 lb 5 oz girl with a headful of dark hair. She was rarely sick and even if she did get a slight cold or a fever it would only last less than a day. Her brother and sister had the ear infections, strep throat, etc. and she never did. I think she had only been on antibiotics once - and that was around age 3. She is a sunny happy little girl who is very talented at drawing and wants to be an artist when she grows up.
I gave birth to Benjamin on July 1, 2002. Melanie is usually the "little mother" and is thrilled to be around babies. I was a little puzzled that she wasn't as excited around him as I thought she'd be. Right around July 10 she developed a low grade fever, but had no other symptoms other than being a little listless at times. On the 15th I took her in to the doctor because of the fever, but she was still showing no other symptoms, he said her glands felt a little swollen, but couldn't find anything else wrong with her. He said to give it a few more days and then he might test her for Mono. It was puzzling because she would have a slight fever, feel a little punky, and then feel fine again the next day and be acting completely normal. Took her in again on the 19th and the doctor thought he heard something in her chest so he ordered an x-ray to be done in their office. He said she had Pneumonia, and prescribed antibiotics. Her fever cleared up for a few days, but was back again early the next week. On the 24th the doctor called and said that the radiologist had been reviewing the film taken the week before, and saw something that he wanted clarification on so he wanted her to have a CT scan. That afternoon we went back to the doctor and had another x-ray and CBC done. The x-ray showed that the pneumonia had started to clear up, but there was still fluid in the lungs, and this time a faint white mass was showing in the middle of her chest. I was starting to get concerned, but still thought it might have something to do with the pneumonia. Her CBC was pretty normal - her WBC was slightly elevated (I think around 16.5 or so) but they said that could be her fighting a virus.
The next morning (the 25th) we went for the CT scan about 11:00. At noon I was making lunch and the phone rang. It was my doctor (he delivered two of my kids, and has been the doctor for all of us for the last 10 years so he knows us really well). He said that the radiologist had picked up on a large mass and wanted us to get it checked out. He said that he had contacted DeVos Children's Hospital (about 1-1/2 hours from us) and that we were to pack and go down there right away. He said they would be calling me within five minutes to give me directions. He then asked if I was ok, and I broke down crying and said that I was scared. He reassured me that most of the things it could be could be treated, and even thought that it may not have been anything serious. A female doctor from the Oncology Clinic called and gave me directions and then said "We'll take good care of your Melanie" in the sweetest voice. At that point "FEAR" entered my body and I knew that something was very wrong. We rushed around the house throwing things in a bag and made arrangements for Alex and Kristina to be taken care of, and for her dad and his girlfriend to go too. I was still nursing Benjamin, so he went too. We were down there by 3:00 and checked in through the Oncology Clinic. They started an IV, took some blood, and we gave our history and waited. I think it was around 5:00 when an Oncologist came in and said the words that changed our lives forever: "It looks like she has Leukemia".
They checked us in and started her on chemotherapy that night. The next morning she was scheduled for a femoral line, a bone marrow aspiration, and lumbar puncture. They couldn't put in her Broviac yet because of the mass in her chest (a mediastinal mass, caused by the leukemia cells). They told us that we would know what kind it was by 3:00 the next afternoon. I knew there was a "good kind" and a "bad kind", one with around 90% cure rate (ALL) and one with only about a 50% cure rate (AML). Those 22 hours were the longest in my entire life. I couldn't eat, I couldn't sleep. I had to be strong for Melanie, still take care of Benjamin, make arrangements to be down there for at least a week, maybe a month. It was a very bad night.
The next day we assembled for a family conference consisting of me (Melanie's mom), Rick (her step-dad), Bill (her father), Tina (Bill's girlfriend), the Oncologist, the Social Worker, and a nurse. We had to walk together to a conference room three floors up and while I probably looked fairly calm on the outside I just wanted to scream at the doctor to tell me if it was ALL or AML. We sat down and he organized his notes and then I'll still remember his words, and a great weight lifted: "Melanie has Acute Lymphoblastic Leukemia". As soon as he started saying Lymphoblastic I remember feeling so relieved. Isn't that horrible? Your child has a horrible life-threatening disease and I was relieved. But as other people have said, it was the lesser of two evils. At that point I started to feel a little better because we knew what it was and we could fight it. Some people just lose their children suddenly or to a much worse disease, so at least we have something to fight against. I am also VERY thankful that we caught it so early. From the first doctor appointment to diagnosis was only 10 days. I credit the radiologist at our local hospital for picking up on the mass before it really started causing breathing trouble. Melanie has t-cell ALL (which typically does present with a mediastinal mass) and I have since grilled her oncologists and they reassure me that it is just as treatable as the pre-B type. She was labeled a "rapid early responder" by going into remission by day 7, and the chemo made the tumor shrink by then also. She was put on CCG-1991 protocol, which is for standard risk ALL. Her WBC was 23.6 at diagnosis, and her other counts were good. She was only in the hospital for a week, and the day we were discharged they were able to put her Broviac in.
So far she is responding to treatment beautifully. She has not needed any transfusions or time off chemo for low counts. Her hair thinned but is not gone, although it may by the next stage of treatment. She is so brave and such a good girl. I am astounded every day about how well she is taking this. She is my hero.
Kathi
Mom to Alex (8), Melanie (6), dx 7/02 with t-cell ALL, on CCG-1991 standard risk
Kristina (4), and Benjamin (born 7/1/02). Married to Rick.
Daniel
Daniel Deitz, Diagnosed w/ Pre B ALL 7-17-01 at Age 3 1/2
Daniel has always been a very high energy child. That is why I found it
very strange last summer when he refused to go in the swimming pool and just
laid on a chair. Or when he sat on my lap at his brother's baseball game
and looked extremely tired. I thought maybe it was from giving up naps so
didn't give it that much thought. After a week of this, he felt a little
warm and complained his stomach hurt. Then he said his throat hurt also. I
figured I might as well take him in for a strep test.
Monday afternoon we went to the doctor. She felt his stomach and then had
another doctor come in to check it. I didn't know it at the time, but I
think she already suspected something unusual when she felt his liver and
spleen enlarged. She ruled out strep and mono. Then, after waiting what
seemed like an eternity, she had the nurse take my daughter and Daniel out
of the room. I knew then that it was bad. She showed me the results of his
CBC telling me everything was way below normal. She said it could be a
virus, Leukemia or Aplastic Anemia. I was in shock. My husband and I
rushed Daniel down to Fairview-University right away.
As soon as we arrived, the fellow on duty showed us to our room and started
by saying, "First, I want you to know Leukemia is so treatable." That
night, while Joe stayed at the hospital with Daniel, I researched on the
Internet everything I could about Leukemia. The next day Daniel had a bone
marrow biobsy. At 5:00 pm they came in and I remember actually feeling
relieved when they told us he had ALL and not Aplastic Anemia. He had a
port-a-cath implanted the next day and started chemo.
I am amazed at how well Daniel has done and how brave he is at every
appointment. Whenever I feel discouraged, I remember what else that first
doctor that met us at the hospital said. He said, "Daniel will grow up and
he will go to high school and he is going to be ok." I sometimes wonder if
he should have promised us something like that, but I figure I'm going to
keep thinking it unless I have a real reason not to.
Rich
Rich has always been a rough and tumble kid. During a dance at his
high school he did a flip and landed on his head on the floor. Knocked
himself unconscious and knocked out his front tooth. A long visit to
the ER with CAT scans and an automatic blood test to screen for
substance abuse. The ER doc saw some funny cell's reported on the blood
test so he alerted our family physician and they decided to wait a month
as the white blood cells would be messed up with the head injury. Then
since he was responding slowly and moving in and out of consciousness
they transported him from our small town ER to the specialty Children's
hospital 20 minutes away. Neurosurgical consult and house resident
physician couldn't find the CAT scans and ignored my questions on the
blood test. Rich continued to have headaches and was looking pale so
return to Neurosurgeon two weeks later. Again asked why the persistent
headaches, why was he so pale, what about the blood tests and was told
that I was just a mother worrying and that he was on Rich's "side" and
that it would be just fine for him to go skiing and return to wrestling
as long as he didn't get a headache. Skied like a wild man that week,
but getting short of breathe climbing the stairs and couldn't swim the
length of the pool in his life saving class. Caught the flu from his
brother and went to the family doc, who did remember the odd blood test,
so ran another one. This was about 3 1/2 weeks after the first test.
The phone call came as I was heading out the door on my way to work two
days later. "We need you to bring Rich to the office right now". It was
7:30 am. I can't remember if they told me it was leukemia but at that
moment I knew and Rich knew something quite scary was up.
Rich was diagnosed with Pre B cell ALL on Thursday February 26, 1998.
He was 15 and a freshman in high school. We had to decide whether to
enroll in a study hear all about the side effect of every possible drug
that could be used in that study, and start chemo therapy all within the
next couple of days. Bob and I were numbed with worry and grief, but
you find you can't let this control you because you have to help your
child and make decisions and find out everything possible about this
disease and digest it all when you can't even figure out what day and
time it is. Good friends and family are a huge help. Rich started
interthecal chemotherapy the next day at noon. He ended up being
randomized to an arm of a CCG study which lasted 3 years and 3 months.
He finished his freshman year on home based instruction. Then was able
to return to school for the most part and participated in high school
soccer and intramural volleyball and basketball throughout high school.
During high school and now Rich has always tried to push himself and
live life as fully as he could at the moment. Chemo ended the week after
graduation from high school. He still goes for rechecks every few
months and has had no signs of leukemia or long term effects.
Mitchell
Mitchell, 6 at the time, was diagnosed on 6-25-01 with high risk leukemia
due to a mass of leukemia cells behind his eye.
In February, 2001, he got a very bad case of the chicken pox. About a month
and a half after the chicken pox ended, he complained of leg pains. I
chalked it up to growing pains. This happened again, where he couldn't even
walk to the bathroom for a couple of minutes, but they went away. Again, I
had been told growing pains can be that painful. He started getting
headaches in April/May 2001 also. I would give him Motrin and the headache
would go away and he wouldn't complain again for a week or so. In June, I
was out of town for a few days. When my husband and kids picked me up at the
airport, Mitchell looked very tired and was sitting on the floor. He told
me, and I will never forget this "Mom, I have a headache, but when I drink
Coke, it makes it go away. I will feel better soon".
My husband told me he
woke up everyday with a headache while I was gone. I took him to the
pediatrician and told him that he was tired, his eye lids were puffy, he was
having headaches, and now complaining his left eye hurt. He said it was
sinus problems and that he had an ear infection. A few days later, Mitch
woke up blind in his left eye for a minute or so. His pediatrician still
didn't think it was that big of a deal, I guess, and said he still believes
it it sinus problems but if he still was having symptoms in a few weeks, he
would order a CT scan. I inisted on the CT scan now - not in a couple of
weeks. He gave in to me and said to go to the hospital for a CBC but the CT
Scan department couldn't see Mitch until next week as they were booked. We
got to the hospital and I checked in with this wonderful volunteer. I told
her about Mitch and that the hospital couldn't do the CT scan until the
following week. I was crying telling her I knew something was wrong. She
made a phone call and the CT scan was done in 1/2 hour. Thank God for angels
like her. The CT scan showed "something" behind Mitchell's left eye (the one
he had been saying was hurting him) and an emergency MRI was performed the
next day. We were told he had a meningeoma (brain tumor). The MRI showed a
golf-ball size mass behind Mitchell's eye, wrapped around his optic nerve.
I requested a copy of the MRI films before we left the hospital and took them
to a friend who is a radiologist and he said Mitchell's bone marrow looked
abnormal in the MRI, and that he didn't think it was a brain tumor. We were
sent to a Children's hospital where it was confirmed 3 days later that he had
leukemia. He was high risk of relapsing due to the mass behind his eye as
that is extremely rare to present that way. Leukemia is cancer of the blood,
therefore, for the leukemia to mass like that in an area behind his eye was
not good. Well, I am happy to say that Mitch is 16 months into treatment,
and doing well. He was a rapid early reponder, meaning he was in remission
in 7 days. He has a favorable genetic translocation of the leukemia cell
line, T 12;21 (TEL-AML1), his white blood cell count at diagnosis was below
normal, rather than high. It was 2300. He has been a trooper through it all
and I couldn't be more proud of him. He recently had 10 days of cranial
radiation and 3 days of radiation behind his eye, where the mass was. By the
way, the mass shrunk 90% within the first 7 days of chemo. Mitch is now 8,
almost 1/2 way done with treatment and I am seeing a bright and long future
for him. He is being treated on POG 9906 protocol.
Cameron
Cameron was born on October 29, 1991 by scheduled c-section. (It was scheduled for him to be born this way because of the difficulty I had had previously with the birth of Chad 5 years earlier which resulted in him having cerebral palsy.)
Cameron was an incredibly delightful, sweet baby and child. His sweet, bubbly disposition continued as he grew. Then just a few days prior to his 9th birthday, I noticed that he was more lethargic, not eating as well as usual because he "was just not hungry". He was not even very enthused about his 9th birthday party. He had no fever, no bruising, no obvious signs but I had a gut feeling that I should take him in to see the doctor. His pediatrician felt that his liver and spleen seemed to be a little enlarged and sent him for an ultra sound and for blood work. Later that day, he called my husband and me in to talk. He so gently told us that all indications were that Cameron had leukemia but that it would have to be confirmed by a bone marrow test by a pediatric oncologist. Our oncologist's office was closed the next day so we went the following day. The diagnosis was confirmed and his platelet count was very low so we had to go directly to Yale/New Haven hospital to get a transfusion and to begin treatment. The first 10 days in the hospital were rough as I know you all know. He had a psychotic reaction to decadron which scared me to pieces. Since then, he has handled things pretty well. He missed quite a bit of school the first few months. Since then has been into a pretty normal schedule for a kid his age. He played baseball and soccer, enjoys swimming, loves anything outdoors and is basically a good normal kid.
Cameron's diagnosis was particulaly scarey to us because my sister, Linda, died 11 years earlier from AML at the age of 33. She went through a terrible time and had a successful bone marrow transplant before succumbing to pneumonia due to the cyto meglovirus. Our doctors assured us that Cameron's ALL was a whole different ballgame with usually a much better response to treatment. That helped us keep our sanity and still does.
We have had some support from close friends but have no family close by so we really had to handle this whole ordeal pretty much by ourselves. The ALL-KIDS mailing list has helped me tremendously to learn about the disease, to feel on top of things and to feel like we are not so isolated and alone in this process. Thanks to each of you for keeping positive and supportive to us and others.
God Bless,
Juli
Mom to Cameron, 11, dx 11/1/00
Mom to Chad, 16 with cerebral palsy
Mom to Derek, 17 a terrific bass guitar player
Wife to Ed for 19+ wonderful, adventurous years
Julia
Julia was born 5/25/89. She is our third child. She was 9lbs 11oz.
but a normal presentation and a normal sized head. It was not a difficult
birth considering her weight. Her brother had been 9lbs 5 oz. She was a
bundle of cheeks with big round crystal blue eyes and she was always sucking
one of her thumbs. Julia, however, was accident prone. She was always
tripping or falling. She never broke any bones but she chipped her baby
teeth. She was rarely sick and was a joy to have as a child.
She had trained every day during the summer to make the field hockey
team in seventh grade. She ran around the high school track, went to several
camps and ate really well. In her words, "I finally got thin, my hair was
light blonde, and my bangs had grown in." She was ready to conquer the field
hockey team and the seventh grade. Three days into the school year and after
not making the team. Julia was diagnosed with Leukemia. It was September 10,
2001.
We had noticed in August that she was not able to run as well. She
was also having odd pains in her legs. She would get pain in her side when
she tried to run. She was lying down on the couch to watch TV instead of
sitting on the recliner. She would read instead of going outside. It was an
effort to train but she kept going to the track. Then, she was short of
breath one day while running. We had also commented on how blue her eyes
were one day. I had old her she needed lip gloss on the first day of school.
Julia was very tan but her lips looked off color. She did not tell us that
she could barely try out for the field hockey team the first three days of
school. She was confused and devastated.
My 17 year old daughter who plays soccer had been slightly anemic and
put on iron supplements, so I looked in Julia's eyes. I stopped breathing
when I realized what I had not seen before. She had no color in the white of
her eyes. It was pure white which had made her eyes look soooooo blue. Her
nailbeds were white against her tan skin. She was weak and tired and had
been pushing herself. She was so happy that she looked great and everyone
was noticing that she had lost weight. (another bad sign) There were a few
prolonged bruises on her legs and she had odd pains. I knew it could be
leukemia and we went to the ER since it was the weekend. I actually asked
the Doctor to consider leukemia. He never imagined that I could be right
until the Hemaglobin came back 5 and we put Julia in an ambulance for a ride
to CHOP. The hematologist looked at the slide and confirmed the diagnosis.
I had told my husband to be prepared that it could be leukemia but he was not
prepared at all. He just cried openly in her room and had a really hard time
accepting the diagnosis. My hardest time would be when Julia's counts were 0
after her DI and we were in the hospital. I wouldn't let her leave the room
and I cleaned everything constantly. I was petrified of infection and I can
only describe it as barely breathing and feeling very cold. Everything else
could be managed, but I was afraid that we could lose her if I wasn't
carefull enough. Fortunately, Julia's counts weren't 0 for long or they
would have needed to do something with me. Now, she is in maintenance and we
are re-establishing our lives. However, I am always aware that at any moment
our best laid plans can change in an instant. I live for the moment, the
hour and the day.
Andrew
Andrew was born 4/4/1993. He was our first child. He was an extra special joy
for some ill informed Dr's told us to wait (we did) to have kids or not at
all due to my wife's heart arrhythmia. Turns out it was nothing to be
concerned about, but this did not happen until we "fired" her primary care
doc and Cardiologist. Andy was a normal healthy baby. He weighed 7lbs 15 oz
and was 21 inches. He scored very high on the Apgar test. Andy had an
unusually healthy early childhood. He never had an ear infection, had perfect
attendance in grades one and two at elementary school. Before school started
the fall of 2001 he was practicing football (yes pads and all). My wife and I
were leery of letting him play full contact football, but my involvement in
the local Dad's club showed it (football) at that age had no more injuries
that soccer. While practicing I could tell something was just not right. He
was passive vs. his normal competitive self. He also had some bruising, but
so did the other players. School started after the first week of practice and
he was tired all the time. I thought the demands of 3rd grade and football
(it was very hot during practice) was the reason. I told Andy, I think we
should let football go until nest year for school is giving you quite a bit
of homework. He would have nothing to do with that, for he is not a quitter.
(I could have "made" him quit, but saw no "urgent" reason). Andy was and is
very tall for his age. Always over the 100% mark. He played the first game
and "dominated" his opponents that faced him on the line. Later that week, we
found is was "providence" working for he had a nosebleed on 9.29.2001 in at
school. It was one that would not stop, so the school nurse called myself and
my wife and we met Andy at school. The nurse accompanied Andy and my wife in
her car as I followed to the local ER.
They tried for 2 hours to make it stop and could not. During that time, they
ran a CBC blood test and about an hour into our visit at the ER, the ER Doc
pulled me aside and said "we needed to talk". My heart sunk at that point as
well with the words to follow. He told me that Andy had a platelet count of
10,000 and the norm was 150,000-400,000. He further stated that Andy needed
to be rushed via ambulance to the main hospital Pediatric Unit where a
Pediatric Oncologist would be meeting us. It rocked and tuned our world
upside down in three hours time. We met with a very kind Doc and she
mentioned what Andy's blood work meant and that she has been examining it and
thought is was Leukemia and would have a definitive answer the next day after
a bone marrow biopsy. The next day confirmed her suspicions (and mine) and
she laid out a "game plan". We had the same feelings the people on this
board have been though. Shock, anger, "why", and emotional exhaustion. His
hospital stay was prolonged for there were a few complications. He developed
"transient" type I diabetes that was attributed to Decadron. It caused a
roller coaster ride of when he would be released for they had considerable
problems regulating it. When people ask me what I was doing at "the moment"
on 9/11, I was chewing out and incompetent Pediatric Diabetes Specialist who
had the audacity to tell my son he had type I diabetes in addition to
Leukemia. I asked him to step out into the hall immediately and read him the
"riot" act. I has only one hour sleep (Andy had a really bad night.). I asked
him is he ever treated a child with Leukemia and he said no. I asked him is
he ever treated anyone using Decadron and he said no. I them said "how DARE
you come into my sons room, scare him when you are completely incompetent and
unprepared to see a patient! I told him I never wanted to see his face again
and was reporting him to the Hospital ethics boards. Any first yr. Med
student knows the one of the predominant (20%) side effects of Decadron was
Type I transient diabetes. I knew at that moment I had to quit my job and
make my # 1 priority taking care of Andy. My wife went back to work as a
teacher and had great insurance. It put us in the "red" in a big way every
month, but that did not matter. Andy needed some one to go to the clinic
sometimes 3 times a week and be there 24*7 for him. We pulled out 3 yr old
from pre-school (too many possibilities for transmitted germs). Andy is in
long-term maintenance now. He made it though all the chemo and "Arm C" of CCG
1991 without ever having to be re-hospitalized (I am very grateful) and doing
very well! I will post an update that is "current" and will share our "make a
wish trip"!.. that we just returned from this Monday past.
Mike
Dad to Andy age 9, dx 9.30.2001, pre B ALL, CCG1991 Arm C, on Long Term
Maint since April 2002., Dad to Gregory age 3 and Husband to wife Teri.
Rosie
It was just after Christmas and everybody in the family had their usual
seasonal colds. Rosie's was almost three and had just had her three-year
well-child visit with the pediatrician. All seemed well. But everybody else
got over their cold in about a week. Rosie just didn't seem to get well. At
night she had this lingering cough. That's all it was...a cough. No fever.
I let it go for another week thinking it was just bronchitis or something
along those lines. So, one week with a cold like everybody else, then one
week with a cough. I took her to the pediatrician then, thinking she must
have a bacterial infection. During the day she seemed fine...a little tired
maybe. But at night, that pesky cough would keep her from sleeping. The
pediatrician took a good listen and didn't find any pneumonia. She told us
to give it a few more days. On Monday I was back to the pediatrician saying
the couging was getting worse at night, so they ordered a chest x-ray.
Perhaps it was a pneumonia that they couldn't hear through the stethoscope.
The x-ray came back clear. On Wednesday, I was back to the pediatrician
again. She was looking very pale. The pediatrician thought it might be
anemia. I'll never know for sure if she suspected more at that time. But
after three visits to the pediatrician in one week, she ordered a blood test.
The rest is history. She had a white count of 12,000. That night in the
E.R. was the first and only time she had petechiae that showed up on the
skin. Acute Lymphoblastic Leukemia. She was diagnosed on January 26th, 2000
and enrolled in clinical trial CCG 1952. She completed treatment on March
24th, 2002. She is presently off-treatment and loving kindergarten. My
hope and prayer is for remission forever for every child.
--Amy
Megan
Megan was diagnosed with ALL on December 18, 2002. She had not been feeling right the 3 weeks or so before this. She was looking pale, napping in the afternoons, and had a recurring cough. These symptoms never seemed to hit on the same day, and there were days in between that she seemed to be doing great. On this day, it all seemed to come to a head. She had no energy, the cough was worse and she was very pale! I took her to her pediatrician at 10:00 a.m., and he ordered some labs. The lab said that the results could take up to two hours, so I took her home. I was not too terribly concerned, as she had been a very healthy girl.... until now.
The doctor’s office called at 12:00, and asked me to come in and meet with the doctor. My wife Teresa was still at work and due home in 40 minutes. I thought about waiting for her, but I wanted to get Megan there as soon as possible...she probably needed more labs. I knew that we would be at the hospital for at least an hour or so. Looking back, I obviously did not have a clue.
The doctor sat down and informed us that he had some “tough news”. Then it got a little blurry. He told us that she had leukemia, and that he was hopeful that it was the best of the childhood leukemia’s (ALL). He told us that he had already called Doernbecher Children’s Hospital in Portland, and was waiting to hear back, on whether or not they would have a bed for Megan. He told us to go home, and that he would call when he got word from DCH.
I was home before 12:30. Teresa would be home soon. I did not know what to tell her. The doctor called shortly after that and told us to get to DCH ASAP. They were holding a bed for her. I got Megan a suitcase, and called my in-laws. I was a total mess! Teresa was my rock.
After a five-hour drive in the pouring rain, we made it to Portland. She had spinal tap with bone marrow aspiration the following morning. They also gave a chemo injection in the spinal column just in case there were any leukemia cells found there. The doctors said that the amount found was less than 1%. This was our first “good sign”.
Before Thanksgiving, My in-laws had rented two condominiums on the coast for their Christmas present to us. We were going to have a beach Christmas! This of course, all changed. I think it was about Dec. 22, that we came to the realization that our little Megan’s life was changed forever. Megan has Leukemia.
The doctors said that they would need her to be without a fever for 48 hours for her to go home. I was surprised to hear that any fever over 100.4 was cause for alarm. Megan was scheduled to go home on December 22, but had a “mild” fever that night. I think it was 99.7 or so. Megan was pretty messed up. For her, I think this was the point that she realized how sick she was. With this news, I decided that it would not be so bad to go home on Christmas day. On the 23rd, her temperature was at 100-102 all night long. We would not be home for Christmas. From this point on, I had decided that we should not make plans. This was clearly in Gods hands now.
All the staff did their best to make this the best Christmas possible for their patients. I don’t think that a day went by that Megan didn’t get a stuffed animal, or some other toy. Volunteers were always bringing a dog or cat for the kids to love on. These volunteers were very special people, as they appeared to act on their own. What I mean is that they brought in their own pets, on their own time. We were truly blessed! These were all very good and caring people.
In spite of all their efforts, Megan only wanted to be home for Christmas. In place of that, she said that she wanted her brothers for Christmas. My in-laws really came through here. They brought the boys up on Christmas Eve, and stayed through Christmas day. Again another blessing.
Megan was discharged from DCH on December 27th. Again, we had another rainy drive, but it was a good day! Today is January 1, 2003. Megan has been fever free since we got home. Her attitude is good, although she appears to be very moody in the a.m. The doctors said that the dexamethasone (steroids) might make her a little moody. Oh well, she never has been a morning person.
On Friday Jan. 3rd, we have another bone marrow aspiration and spinal scheduled in Portland. Please pray for us, as we would not mind some good traveling weather.
God Bless!
Leah
On February 19,2003, our life began a new journey. Our granddaughter Leah, was diagnosed with Acute Lyphmoblastic Leukemia. Leah is 7 years old, here is a journal on her journey to healing.
On January 31, 2003 she woke up with a sore throat. On February 3, 2003, she started to complain about her tummy and pain in arm and legs, she and a fever in the evening. On February 4, 2003, she awoke up with the fever and stayed home from school. On February 6th she saw her doctor, and was told that it was viral and let it run its course. On February 10th Mom took her back to the doctor, he order blood work and at first he diagnosed her with (CMV) cytomegalovirus infection. The infection mimics mono but is not mono. There is no antibiotic that can be given and there is no known cure. The infection since it is viral could last 3 weeks to 90 days and then will remain dormant in the body for years and recur. The infection is contagious and currently she is not allowed to back to school. Leah has now been sick for 2 weeks with a fever, mild sore throat, enlarged spleen, nausea & muscle aches. On February 13th her Doctor called on a specialist to discuss Leah's case to get a seconded opinion, we are so thankful that her doctor took this extra step. The Doctor is a specialist in children infectious diseases at the Dupont Institute in Wilmington, DE and the Doctor wanted to see Leah February 14th. The specialist ruled out a viral infection and then called on an oncologist. The Doctor let her go home but Leah went back for blood work on February 18th so they could compare her blood work that was taken on the February 14th.
Our granddaughter, Leah was then admitted to Alfred I Dupont Hospital on 2/18/03, it is now 99% leukemia. The Doctors will do more blood work and a bone marrow biopsy tomorrow to determine which type and a spinal tap and she did receive blast to protect her spinal fluids. On February 19th the doctors confirmed that it was ALL. She received 2 blood transfusion and 2 platelets transfusions.
On February 20th Leah began her first chemotherapy. The chemotherapy now is high doses to blast out the bad guys for the next 28 days. As the bad guys are killed and flushed out of her system this all goes through her kidneys. Pray for God's protection over her kidneys as the chemo not only kills the bad guys but can damage the good guys and other organs. The team of Doctors goal is have Leah home in 24 days. Then she will go twice a week for chemotherapy for the next 2 1/2 years ( I may not have this right). Today Leah is not feeling the best after getting her meds. Leah needs new strength for each new day. We can not let up on our prayers for her because our prayers are going to sustain her daily to fight the bad guys in her body.
On February 27th we had good news about Leah the doctors were hoping for 5% remaining of cancer cells but God has lowered the cancer cell to 1 to 2% which makes Leah's body a quick responder.
On March 4th Leah was admitted to hospital again. The last treatment of chemotherapy on Feb 28th was an increased dose and her body just couldn't tolerate the increase. She has been vomiting and has severe diarrhea. The doctors didn't want her to become dehydrated nor pick up an infection. So please pray that they get her regulated without these adverse reactions to chemotherapy.
On March 5th, Leah's immune system is extremely low and she has a viral infection. She also received a platelet transfusion last evening and a platelet transfusion today as her platelet count was low. She had a MRI for her right leg as she has a lot of pain in the leg, this is precautionary to make sure there is no blood clot in her leg. The low immune system and the platelet transfusion are not uncommon in children receiving chemotherapy as good cells are attacked by the chemotherapy. An ANC (absolute neutrophil count) of over 1000 is the goal for Leah but currently she is at 80. When her count is this low visitors have to wear a gown, gloves and mask. Lets agree together in prayer that God will increase her immune system and increase the anc to over 1000.
On March 6th the doctors got the results back from the MRI on her leg and it showed an inflammation in the leg so the doctors made a decision to do a biopsy of the muscle tissue in her leg. They are now waiting on the biopsy results. Leah has been through so much... her white blood count is 0, her anc level is 77 down form 80 yesterday and her hair is now falling out. Thank God the cancer cells are down to 1 to 2%. Without God and prayer I do not know how any family makes it through this process of chemotherapy and watching their child suffer. We just have to trust God to intervene for them. I will let you know the results of the biopsy as soon as we hear.
A preliminary result is in from the biopsy of Leah's right leg, she has myositis infection of the muscle tissue - myonecrosis. This is a very serious complication - she is now on antibiotics. Leah is severely neutropenic - no white blood cells and the low anc count at 77. Chemotherapy kills the cancer cells and the good white blood cells which Leah needs to fight off infections. At the present time the chief of oncology can not give a date when Leah will be able to come home from the hospital. The final results of the pathology report also showed a staph infections in her blood so a bone scan was ordered for Monday.
March 10th, Leah's ANC count is now at 8, she is severely neutropenic, which means she can not fight off any infections, virus, bacteria etc. Leah had the bone scan today and preliminary results are back, the final results will be given tomorrow. Leah will have at least two more weeks of IV antibiotics. Our source is that sustains us is God and prayers. As we pray for you please pray for Leah.
Jeremiah Prison Ministry ~ Revs. Thomas H. Jr. & Monica A. Cohee
Martinsburg, WV
http://www.ourchurch.com/member/j/jpm
jeremiahprisonministry@juno.com
"His Mercy Endures Forever" Psalm 106:1
Joshua
Age: 4 years old
Date of Birth: December 13th, 1998
Main Diagnosis: Acute Lymphoblastic Leukemia
Mom: Karen
Dad: Terry
Mailing Address:
Joshua A.
P.O. Box 85
South Milwaukee, WI
53172-0085 - U.S.A.
Joshua's Story
written by mom Karen
Joshua was born on 12/13/1998, they had to do an emergency c- section to get Josh because he was positioned wrong. He is my little angel, he never cried as an infant or a toddler. He had intermittent fevers of 102º and above since birth, every time I called the pediatrician the would say "give him Motrin and keep an eye on him and if the fever last more than three days bring him in the office".
Well, the fevers never lasted that long so I thought maybe he just had a bug. About four weeks before he was diagnosed, he was having high fevers on and off so I gave him Motrin. One day Josh was having arm pain and could not lift his arms above his head, (I thought he might have broken his collar bone) so I took him into the ER and they took some X-rays and found nothing and said maybe he strained it. A week had past and it still was hurting him, so I took him back to ER again they took more X-rays still found nothing. While in the ER I noticed some little red dots on and around his shoulder and in his mouth. When I asked about them on his shoulder they said it was nothing to worry about, it was probably just a rash from the sun, and when I asked about the sores in his mouth they said he must have bit the insides of his mouth.
Then on the 22nd of June 2002, we went to a pool party and Joshua didn't have any interest in swimming or playing. I felt so bad, everyone else was in the pool having a good time and there was my little boy looking so sad. One week later June 29th, (THAT'S THE DAY MY WHOLE WORD FELL APART) Josh was not feeling very good that morning, he was very pale and he wouldn't eat his breakfast (and for Josh that meant something was wrong) Joshua was one to eat everything and anything, he would take the food from his plate and stuff it all in his little cheeks (It was like he wanted to save some for later. Josh has 2 sisters and 2 brothers, I always wondered if he thought maybe his brothers and sisters would eat his food too). He was very warm also that morning, so instead of taking him to out to the local ER again I took him to Children's Hospital of Wisconsin. IT WAS THE LONGEST DAY OF MY LIFE.
When we got there, Josh felt a lot better and didn't have a fever, but still looked pale. The nurses came in and asked us all kinds of questions (I'm not even sure what they were anymore). Then a nurse came in and wanted to get some blood samples from Josh, so I said "OK, but you only have one chance at finding his vein". (I've seen to my little kids poked over and over again, all because nurses wouldn't know what they were doing).
After a few hours the blood work finally came back, I couldn't believe what I heard (LEUKEMIA) I really didn't know anything about it, but I knew it was CANCER. I wanted to know why Josh? Why my little boy? I must have gone into shock after that because I really don't remember anything else. All I know is I wanted to take Josh home and say it was all a bad dream. I asked myself over and over again WHAT DID I DO WRONG?? His CBC on that day was WBC 167,400 Hemoglobin 3.6, Platelets 12,000, RBC 1.50, LDH blood was 2895 so they diagnosed him with Acute Lymphoblastic Leukemia even without a spinal tap.
The following day, he was taken to the operating room where a port was placed for venous access. A spinal tap was performed at that time. Analysis of the spinal fluid showed no evidence of meningeal disease. Joshua required a lot of packed red blood cells and platelet transfusions throughout his hospital stay which was 11 days. Josh is on POG# 9905 Regimen A for standard risk. He went from High Risk to Standard Risk because they found an extra chromosome only in the leukemia cells.
Joshua is now in remission and 11 months into treatment. He never lost his hair so he must have really good hair genes!! I am still amazed everyday at how strong my little boy really is I'm so proud of him.
Dx date 06/29/02
Emily
Hi My name is Brandy. My daughter Emily, is 5 years old. She has pre-b. She was high risk all.
My daughter was diagnosed with leukemia on October 2nd 2001 in the emergency room at Cook Childrens hospital. She had been sick for several weeks. In June of 2001 she had a bad ear infection and it ruptured. We went to see an ENT and they said they were going to reconstruct the ear drum and put tubes in her ears. On October 1st they called and told my mother they couldn't do it. She didn't ask questions so I told my aunt that I was taking her to Cooks childrens that night. She said okay and told me that she was going with me.
At 10:00 that night we got there and I told them what was going on and they told me they were going to run some tests on her. At that point her eye was swollen shut because she had a severe sinusitis infection on top of that. They drew her blood and they didn't like how it look and they called in the Hemotolgist and they looked underneath the microscope and they found some Leukemia cells. She had to spend a month in the hospital and every 3 week for 6 months in there.
Benjamin
Our son, Benjamin was born on 12/16/01 after a normal pregnancy. Healthy and cheerful, he progressed quickly through all his milestones and was doing well. Ben would occasionally catch the usual virus going around, which usually ended with an ear infection. But even when he would get sick, he was still happy and mischevious! Our saga began in August of this year. Ben had caught a viral infection at the beginning of August, which of course ended with an ear infection. We went the standard course of antibiotics and Ben was improving. Less than two weeks later, he ran another fever (after a playdate). After a few days, the fever subsided in the morning of August 13 (so I thought). Ben and I went out to run errands, returning for lunch and nap. He was afebrile when he went to sleep but when he woke up, he was running a 102 temp. My first thought was another ear infection. That evening, I noticed he was walking "funny", but was cheerful otherwise. We went to the pediatrician the next day, and yes, it was another ear infection. That day, Ben got an injection of Rocephin and was going to start more antibiotics. By Thursday night, he refused to walk at all and screaming when he couldn't reach his toys. My husband and I were scared, but hoped that the fever and injection were causing muscle soreness (I was too scared to think otherwise). I called his pediatrician the next day. August 15th- he examined Ben (Ben would walk some by then) and thought that maybe the injection was causing the soreness. He did ask if I would take Ben to Children Hospital outpatient to have blood work and xray done to make sure that Ben was getting the right medicine for his problem (maybe a bacterial infection instead of viral). Thank God he suggested that! He called me an hour after we returned from having the tests done. Ben's xray was normal, however his blood work was not. When his MD said that there were 50% blasts in his blood, my mind went blank. I worked in the medical field for a long time and I knew what that meant- I just couldn't associate the word Cancer with my sweet, cheerful son. Dr. Blevins asked me to get Ben to the hospital that evening- that he had already spoken with an oncologist who was expecting us. The next few days were a blur- Ben was diagnosed with pre bcell ALL on his 20 month birthday. Although it's taken a while to sink in, his prognosis is good. He just finished the induction phase and was an "early responder" which means that by day 14, they found no leukemia blasts in his bone marrow. He is still not walking, but now that he's finished with the steroids and vincristine, he can start therapy. I thank God every day for my little boy and for Dr. Blevins who helped to diagnose my son early, before Ben became really ill! I say to all parents- trust your instincts and be an advocate for your child!
Julianna
Born June 6, 2000...our Millenium Baby!
Diagnosed with pre-B ALL on September 4, 2003, at 3 years, 3 months of age.
Treatment Protocol CCG-1991, arm to be determined next month.
Where in the World is Julianna Banana?
Winnipeg, Canada
This past Laborday weekend, Julianna came down with a fairly high fever, and she was up most of the night throwing up. The nausea went away by the next day, but her fever persisted. By Wednesday, we were concerned that the she couldn't shake the fever and that she might have an ear infection. I took her to see her pediatrician that morning, and he looked Julianna over. He concluded that she seemed fine, and that the fever is probably the result of some sort of virus. He expected that the fever would probably break over night. Julianna has had a history with fevoral convulsions, so her doctor told me not to worry about her having one. They only happen within the first 6 hours of getting sick, he said.
That evening, I was downstairs with my son Nicholas when my wife screamed out to me. "Terry, she's having a convulsion!" I ran upstairs, immediately grabbed a big clock sitting on our TV and timed the convulsion while we comforted her though it. Fortunately, it wasn't a long one, and she went without air for less than a minute and a half. In the past, we have been told that these convulsions are actually pretty common and, unless she goes without air for some time, we didn't need to bring her in to see a doctor. Ya, RIGHT! If you've ever had the unfortunate experience of watching a child go through a fevoral convulsion, you'd understand the uneasiness and fear that it puts in your hearts as parents! Throw in the fact that I was just told only hours earlier not to expect them, and we were concerned. So us "overprotective" parents took her to children's emergency where she was looked over. Everything appeared fine, other than the fact that Julianna walked with a slight limp for the doctor. The doctor asked for our permission to run a test to screen her blood...just as a precaution. An hour and a half later, the doctor took us to a different examination room and brought a second doctor with her. She introduced him to us as a hematologist. That introduction sent a chill down my spine...why was HE here? He informed us that Julianna's white blood cell counts were marginally below what they would deem as acceptable and, because her neutrophil counts were also low, they wanted to keep her overnight for observation to see if the counts would rebound. The hematologist said that this is common, and that the counts should spring back and she could go home in the morning. However, he was not at all comforting, to me he appeared very nervous and I was suspicious of what he was thinking. No other possibilities were mentioned.
My wife Mary stayed with Julianna that night. Mary knew in her heart that it was leukemia, and she spent a lot of that night crying after Julianna went to sleep. By the time I got there the next morning, they had already taken the next round of blood work. It came back without change from the previous night and they arranged to take a bone marrow sample from Julianna's hip later that morning. When that time came, there was only room for one of us in the procedure room with Julianna, so my wife held her hand through it while I waited outside the room. Julianna was not sedated for the bone marrow (and in fact has never been sedated for her subsequent bone marrows either), and there have been but a handful of times in my life when I was as horrified as I was hearing her agony and not being able to comfort her.
Mary and I live a two hour drive away from both of our families. We had to tell them what was going on, but without scaring anyone in case it turned out to be nothing. I couldn't call my parents or my mother-in-law because I knew that I wouldn't be able to tell them without breaking down, so I called my brother-in-law and my sister instead. I tried to downplay what was going on, but I finally broke down talking to my sister. Within 3 hours, Mary's mom & brother and my sister & boyfriend were with us, waiting. When the lab results were back, a pediatrician covering for Julianna's regular doc (the guy she saw the morning before) came in to tell us that the pediatric oncologist would be in to discuss the results shortly. Looking back at it, I never even noticed the word "oncologist" as being out of place. An hour later (September 4, 2003, 5:50 pm), the oncologist and one of the nurses from the cancer clinic took Mary and I to a private room and told us the that Julianna has ALL. They were very thorough in their explanations, answering all of our questions (not that we could think of many at the time) and walking us through the treatment plan. Our talk was over 2 hours long, and we walked out of it bewildered, but focused. For our family waiting for us, those two hours felt like two days! And every minute we were in there longer, they appreciated that much more the severity of the situation.
All told, Julianna spent 5 days in the hospital before she was discharged. Mary never left her side.
Terry Josephson
tjosephson@shaw.ca
Dad to 3 year old Julianna & 6 year old Nicholas
Husband to Mary
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