C.C.'s Continuing Journal

05-31-00 Through 07-14-00




Contained in the following is a journal of how our days played out from the time Cees had his stem cell transplant the winter of 1999.  I am so happy that I kept a journal.  Not only has it helped me and my family to go back and read these final days, it most hopefully will help our friends and others that may be on the same journey as we have now completed. 

05/31/00 ~ Wednesday

Hello to all our wonderful friends and family.

Hi All! We just got back late last night from Salt Lake City. The trip was uneventful as far as the drive. What beautiful scenery and sunsets we saw both going and coming! I drove, Cees just watched and enjoyed the scenery. He was a great help to have as far as directions, I didn't have the map in the car.

We found that because of the higher elevation and because Cees' red cells were down, he was having problems staying oxygenated. I took him into the local hospital last Saturday afternoon for a CBC and his red count was at 29 his platelets were at 21. Before he left for Utah he had been infused with 3 units of packed reds and 1 unit of platelets. The reds were at 11 and his platelets were at 4. They are probably pretty low again, because even though we are home, he looks and feels pretty punk... We have an appointment for tomorrow morning for a CBC and Doctor conference. I won't be surprised if he puts him back in the hospital when he sees him.

Even though his white count was up to 6900 and his ANC's were almost 1200, it seems as though his marrow is not able to produce the reds and platelets. Doc says it's because the precursor cells that eventually become the cancer cell is keeping them from developing. We hope to hear that Doctor has talked with Fred Hutchinson as to what protocol they will be able to use to get this disease under control.

Please everyone, pray for enlightenment for our Doctors and strength for Cees to go this gamut again... It must be so hard to do this over and over and over and think you have it beat just to find out it's reared it's ugly head again. Please pray for strength for me to be able to stay strong for him....

06/02/00 ~ Friday

Hello to all our wonderful friends and family.

Cees had a good night, they've gotten him re-infused with packed red cells and platelets. He called me this morning and except for a small bit of fluid in the lungs from the fast infusions, he says he feels MUCH better! They have him on lasix to help remove the extra fluid and help the breathing. He is still on oxygen but instead of 6 liters they have dropped it down to 3 or 4 liters. Last night even 6 liters of oxygen was keeping him at 85% oxygenated. When we were in Salt Lake City last week, even at 4000 feet higher altitude, it only took 2 liters to keep him at 95-98% so I expect he was having a pretty tough time of it.

He was pretty sick yesterday when I took him in. His HMCT (red count) was at 14 and should have been at 40. His platelet count was at 9 and should have been at 250. The doctor said his blood is now showing a 1% blast count (cancer cells) which means the leukemia is back and spilling over from the marrow into the blood.  That is why he is not able to make the red cells and platelets that he needs.

It was so great to hear his voice this morning when he called. The last few days it was like he was just falling into a great crevasse, further and further away from me. He sounded so much more like himself today.

The Doctor was in this morning and said he would stop by later on evening rounds to discuss further plans of treatment. He did say yesterday the plan was to get Cees feeling better and stable and to again attempt a remission. He has spoken with Fred Hutchinson Cancer Research Center and they have told us that he is a candidate for a couple of protocol treatments they have. We are very excited about that to be sure!

So for now, that's where we're at. I'll know more tonight when we speak to the Doctor. I've posted his mailing address and phone number to his main page in case anyone wishes to mail him a card or just say hi...this is going to be a long haul on this one, maybe even longer than 5 weeks this time. Any small amount of contact really lifts his spirits so don't be shy...just pick up that phone and say howdy!

06/05/00 ~ Monday

Hello to all our wonderful friends and family.

Oh gosh everyone! So much to post tonight, I don't know where to start....! First of all, CEES MAY BE ABLE TO COME HOME TOMORROW! !

They have gotten his Red Count up to 36 and his platelets up to 36 and he is staying oxygenated at about 90-95% He is showing 16% blast counts in the peripheral blood, however the new protocol we'll be starting him on will hopefully take care of that...

I spent last night at the hospital with Cees! I got a movie, packed my bags and we had a wonderful time just sharing time together.... He was so sweet, he had ordered a special fruit platter as a surprise to snack on while we watched the movie...when the nurse brought it in, he just smiled that little imp grin he has and winked at me! When the movie was finished, he helped me make up my rollaway bed, and we lay there until 2 a.m. just talking...it was so wonderful to be able to have that time together...

The reason I decided to stay the night, besides wanting to be there with him, was to make sure I would be there when our Doctor came in for morning rounds. We had to tell him what we had decided to do as far as our options. Cees told him he wanted to stay at Virginia Mason and have the new drug, CMA-676 (Mylotarg) administered there by his original support team. The other choice was to have it administered at Fred Hutchinson under a blind study on varying dosage amounts. They are finding that the higher dosages that they have used are resulting in liver complications and with a compromised liver from all the prior chemo and transplant he had would not be something we wanted to risk. Fred Hutch is working with our Doctor and Hospital for Cees to be able to take a reduced amount in hopes that it will still be able to induce a sustained remission from his leukemia. He will be the first ever to have received this treatment at Virginia Mason so it's a big thing for everyone involved. He has spent so much time with his nurses and Doctors at Virginia Mason, he just doesn't want to have to leave there and try to make new relationships at another hospital...especially at such a critical juncture like now.

SO, the exciting news is, that they have ordered the drug. It has to come from the East Coast and our Doctor will be out of town Wednesday through Friday. He wants to schedule the procedure on Monday when everyone involved in Cees' case can be there. Since he is stable and oxygenated, he can come home and check in throughout the rest of the week. HOW WONDERFUL! ! ! !

Cees will go in on Monday and receive a 2 hour infusion of the CMA-676 and then be able to come home. He will have to go in and be checked frequently and then two weeks later will have another 2 hour infusion. The Doctor said he will do a bone marrow biopsy after the first and before the second dose to see what is happening in the marrow. I know that Cees will be so much happier being able to be home through all of this!

The drug is a new lab created drug that attacks the cancer cells by seeking them out by the protein that the cancer cell gives off.  It kills the cancer cell while sparing the other body cells. It's not as hard on the rest of them like chemo is.. You can go to this address and read about it. The experimental drug CMA-676 Induces Remission In Patients With AML.... http://www.pslgroup.com/dg/1915FE.htm

While Cees has been in the hospital..I have effectively retired him. His last day of work at Boeing was 5/23/00 and he will now be officially retired as of 6/1/00! It's time we start to focus on fighting this disease and not worry about him going back to work. The Lord has blessed us with a pension and retirees' medical to fall back on and while I would love to retire myself, will continue to work until able to do so.

06/10/00 ~ Friday

Hello to all our wonderful friends and family.

What a week enjoying Club Med can do to bring color back to one's cheeks. That and 10 units of packed red cells and a few units of platelets...not to mention oxygen!  Cees came home on Tuesday night, 6/6/00, but before they sent him home they did a bronchoscopy on his lungs. They were needing to see if there were any bleeds into the lungs from his low platelet count and were also checking for blast cells that may have infiltrated had there been one. The report came back yesterday at his follow up appointment that everything was okay. They didn't find anything to cause concern. Thank God for that blessing.

The appointment has been made for Tuesday, 6/13/00, for Cees to go in for his new medication, Mylotarg. We will go in early for a blood draw and then he will have a 2 hour infusion of the medication and then come home. This will be at Virginia Mason and his support group that has been there with him for this past year will be there with him, if not in person, in thought and prayer. We have been so blessed to have the people that God has put in place for us. From knowledgeable Doctors to loving, capable and caring nurses and staff. There most certainly must be a special place in Heaven for such loving caretakers...!

There is a link for the recent drug info that Cees will be using. http://www.pslgroup.com/dg/1915FE.htm It is CMA-676 For Patients With AML Please take a moment to visit the link... Hopefully you will never, ever have a need to use it, but to just know that it's there may be a lifesaver, either for a loved one or just someone who may need it. You never know how the Lord may use the knowledge you have gained from going through a trial. I try not to second guess Him on things like that at this moment in time.

Today we went to our Dog Club's 10th Anniversary Show and had such a wonderful time. Cees was able to visit with everyone that was so concerned for him and they were able to see how much better he was really feeling. The last time they saw him he was really, really sick so it was a good day for everyone today... After the show tonight we all stopped for dinner and on the way out of the parking lot, God gave us the most spectacular rainbow that completely covered our car...from the left to the right it was just electric. Sometimes it takes such brilliant displays to catch one's attention to remind us that, God still is very much in control....yesterday, today and tomorrow....

My prayer.... Please Lord, continue to light our path and still our hearts in this difficult walk that we walk. Remind us too, that sometimes when we can't walk it, you carry us! ! !  Amen!

So, tomorrow's another day, Lord willing, and we have another show. After the show we are going to be able to go out and see our new puppy that is growing like a weed, trying to get big so she can come and live with us. She was three weeks old yesterday. Cees is looking forward to seeing her as he was in the hospital when they were born. He has only been able to see their pictures.  Tomorrow he gets a big dose of "Puppy Breath!  We still ask for your prayers as we step out in faith waiting on the Lord's promises...That is still the only "Magic Bullet" we have and it's the best in the arsenal!

Please be sure and sign his guestbook...he really enjoys knowing you have stopped by to catch up on the news...our counter shows that many have visited, but not who they are. He enjoys having me read your posts back to him and holds them close to his heart.

06/16/00 ~ Friday

Hello to all our wonderful friends and family.

Well, here she is...! ! ! And who do you think has who wrapped around their little finger? Cees was able to go visit our new little girl, Crystal-AH's "A Measure Of Faith" on Sunday after our club's 10th Anniversary show. Besides the excitement of seeing our w little girl, "Faith", Cees' other girl "Ruby" had already won her first Champion Of Champion class which put her on the road to her Grand Champion title. She needs 4 more wins in Champion Of Champion class to complete it. Ruby's sire, finished his Grand Champion title on Saturday, went on to win in Grand Class on Sunday and also took Best Of Breed. It was a very fun day and Cees was feeling quite up to it for a change. He was so very proud to say the least of his girl....! I will attempt to post a new picture each week as we get them updated of Dad & Faith... I call this one "Hanging On To Faith" Seems to fit, don't you think?  Right after this photo was taken Cees said, "Whatever happens, just hang on to your Faith."  I now have a visual reminder of that every time I look at her.

Last Tuesday, 6/13/00, Cees received his first dose of Mylotarg and so far is doing okay. He's had a bit of nausea, achy joints and cranky but, for the most part, still keeps his good attitude.  Please take a moment to visit the link... http://www.pslgroup.com/dg/1915FE.htm  Hopefully you will never, ever have a need to use it, but to just know that it's there may be a lifesaver, either for a loved one or just someone who may need it.

His blast count is down to 1% and even before the Mylotarg his white count had begun to come down and the which was a bit surprising even to the Doctor. He received a unit of platelets yesterday and will get some packed red cells today. We expect his counts to continue to drop as Mylotarg causes the same symptoms as regular chemo but not quite as bad, or so they say. He will visit the Doctor two to three times per week and is scheduled for his second dose of the drug on the 27th of June. 

Cees was officially retired on June 1st so now will be able to be home and help take care of puppies when and if we have some. He hopes to be able to putter around and finish the "He" shed since he has already built me the "She" shed. I'll let you conjure up whatever vision you have regarding that sentence, LOL!

We will celebrate our 24th wedding anniversary on Sunday, June 18th along with Father's Day. Although we have no plans to go anywhere...we will still enjoy the day. Our children will be coming over along with the Grandchildren and that is truly the best gift one could receive. Family is what it's all about!

I'll try to update you all as things progress, but please, don't hesitate to pick up the phone and call. He loves to talk on the phone...especially to all his friends at Boeing....

06/18/00 ~ Sunday

Hello to all our wonderful friends and family.

So, here they are! ! ! ! Most of the whole tribe! June 18th was Father's Day, but it was also our twenty third Wedding Anniversary! Our children stopped by to visit and spend some time with Dad! Left to right starting from the bottom row..our new daughter-in-law to be, Jennifer, her intended, our son Jeffery and our daughter, Denise. Next row is our daughter, Shelley, Cees, of course, and yes, they got me in there too! Final row is our son, Don and his new bride, Andrea. Don and Andréa just got married last month in beautiful Hawaii and our son, Jeff is scheduled for an August wedding. They've just built a beautiful house in Federal way. Our two girls Denise and Shelly live in sunny Los Angeles and flew up just for the weekend to visit their Dad.

Here are some more of the little devils.....left to right on the bottom is our grandson, Curt, his Grandpa Cees and our granddaughter, Jennifer. On top is our daughter Tracie and our son-in-law, Jeff. Jeff and Tracie have been married for 15 years now and have just finished building their first home in South Hill, Puyallup. They will be moving, hopefully, this next weekend if all goes as it should.

They have been working so hard trying to get the new lawn in and make sure it is all ready. Talk about "Sweat Equity", this home will really have a lot of that by the time they both get done with it. We are so excited to finally see their dream finally materialize...they have lived the apartment life for their entire married life...it's time for the dream to happen! ! !

06/19/00 ~ Monday

Well, if yesterday was a perfect day, today was a day of the most total frustration I've had to date. This early morning around 5 a.m. I had to call 911 and have Cees transported via ambulance to Virginia Mason Hospital. He had started a small bloody nose around 1 a.m. and try as we may, we couldn't get it stopped. So when I called Oncology on floor 15, they said to bring him in and for me NOT to drive him, but to let an ambulance bring him in. I was glad to be able to follow those instructions.

We knew that this new drug, Mylotarg was possibly going to be a bit different, but from the get go it has hit like a ton of bricks. Cees has pretty much sailed through all of his normal chemo's (if you can call any of it normal). His high-dose chemo threw him for a loop but we expected that. But this is really quite unlike the other in the effect that it has hit his counts so quickly and relentlessly. He just had two units of packed red cells on Friday last week and today his red count was down to 14, normal is at 40. His platelet level was at 8, should be around 250 and he just received a unit of those last Thursday. His ANC's (fighter cells) are now at 100 and dropping fast. They will need to be at 500 before he can be considered able to fight infection and maybe come home. Again, we new from the beginning this would probably be a little different but wow! Maybe this WILL be the one to get this stuff on the run!

To finish the story, we arrived at the hospital and the on-call doctor conferred with our oncologist and decided to put a packing in the nose. I will just offer to say, that unless you've had it done, you can not even begin to imagine how uncomfortable it must be. First to have this put in the nose and then to have to leave it there for a couple of days with a low oxygen level to boot.

Five hours later they finally get him up to a room...the nose is still packed and we are waiting for platelets to hopefully put the final dam in the nose. They also brought on board three units of packed red cells and by this evening he is feeling a bit more comfortable. His red count is up and he is breathing better, except, of course, for the one stuffed up nostril.

His Doctor came in on evening rounds and assured us he is stable. He has been unsure of the results of this new medication too as it is so very, very new....we are all learning as we go along.. As Cees says, "pioneers in the field Doc, we can be that together!" He always was and still is such a rebel...!

He called tonight to say goodnight and assured me he was feeling better.. Know how I know? He said he ate all his supper..every last bite! When he's eating his meals again, I know things are okay. Not too much comes between this guy and his meals!

I will continue to update as it comes along. For right now, I am exhausted. Haven't been to bed since Saturday night so going their now to catch some zzzzzzzzzzzzzzzzzzs!

God Bless You All!

06/25/00 ~ Sunday

Hello to all our wonderful friends and family.

Cees continues to keep his sweet attitude even though he totally hates being in the hospital. All his nurses fight over who's going to take care of him. Actually it's more like he takes care of them. He makes it so easy for them they say it's almost like he's not there. They actually have a roster like a dance card that they sign up to care for patients. His is constantly full and usually only the senior nurses get the chance to sign up. These nurses are the best I've ever seen. They love him so much and I can see the concern in their eyes every time he has to go back in for treatment. They are truly an extended part of our family to be sure.

Since last Monday Cees has had 17 units of packed red cells and 3 units of platelets. He remains on oxygen but they have been able to wean him down to about 2 liters instead of the 5 liters he was on. The bloody nose has stopped since they've built his platelets up. His Doctor said frankly "your tank was on empty". So, he must have had more bleeding from that nose than we knew from the get go. They continue to give him red cells and platelets until he can make his own.

Cees will have a bone marrow biopsy done tomorrow to give the Doctor a baseline of what's going on in the marrow. He's to have  another dose of the Mylotarg as the usual dosage is 2 doses 14  days apart. His counts have actually been coming up some since his first dose, but so have the blast (cancer) cells.. I just don't know why they can't get these things. You would think if you could see them, you could kill them. Well, that's our plan and we're still stickin' to it...

I continue to work and spend as much time at the hospital as I can. I also need to be home with our dogs as they sense the change and concern in our lives right now too. My Mom and Dad have been here pretty much since this last go around which has been a tremendous help. She makes sure I eat and has completely gotten my paperwork needs in order. Sure glad she did that kind of work when she was working..it's definitely a godsend to have someone be able to step in and take care of those things.

My Dad has helped complete my dog bathing area in my laundry room with my brothers help and my son has taken over for the most part right now, mowing my lawn. Things have been put in perspective and I am able just focus on Cees and his treatment...how wonderful is that?

I just don't have much answers right now folks.  I'll post the news when I have it.  I so appreciate your love and concern for me and for Cees. It really means more than you'll ever know.

06/28/00 ~ Wednesday

Hello to all our wonderful friends and family.


I drove down and picked him up tonight around 9:00 p.m. He received 2 more units of packed red cells, that brings him to 19 since the 20th of June. He gets to stay home tomorrow and will go in on Friday for a blood work up, probably get a unit of platelets and talk with the Doctor regarding the results of the bone marrow biopsy they did last Monday.

He received his second dose of Mylotarg yesterday and already today the results of the drug is beginning to show. His fighter cells that had come back up to over 850 are now down to a little over 600. His white count was down and the reds and platelets were still down. He will continue to go in every other day for blood work and check ups and we will wait to see what results we get with the Mylotarg.

Since he is going to be home for a while, the grandchildren are coming to stay with us tomorrow and go see the Dinosaur movie with us tomorrow night. On Saturday we are driving to Tokland, WA and march in the 4th of July parade with our American Eskimo Dogs and
our club members. Cees is going to be waiting at the end of the parade route with the van... We had a great time walking in the Grayland, WA "Cranberry Festival Firelight Parade" last October and hope to have as good a time this weekend.

Please continue to pray for our needs...I know that the Lord continues to honor your prayers...He has provided so much for us at exactly the right time so I know it not to be just coincidences...God is truly faithful...I've seen Him in action and it is "AWESOME"!

I will post when we hear more....right now it continues to be "hurry up and wait" The thing I do the worst at, waiting....!

06/30/00 ~ Friday A.M.

Hello to all our wonderful friends and family.

I admitted Cees to the Intensive Care Unit at Virginia Mason Hospital last night with a blood pressure reading of 66/44 and loss of blood from an unknown source.

I had him at the emergency room by 8 p.m. and by 9 p.m. they had already ran one bag of saline and started on a second. They started him on the first unit of platelets at around 8:30 p.m. his first unit of packed reds at around 10:30 and moved him to I.C.U. at around 11:00 p.m. He had started a third unit of packed reds by midnight and had a total of 6 units infused by 6:00 a.m. this morning. They've also given more platelets and added plasma to the mix to try to get the blood stabilized. Then they can go in and do an endoscopy to try and see where the blood is going. They are thinking it may be a gastric ulcer but until they get in and visually check they won't be able to tell.

As of this morning when I spoke to the I.C.U. nurse, he was comfortable and stable but still critical until they can stop the bleeding. As for me, I am doing okay, I think.

I got home around 2:00 a.m. and slept in the chair until 6:00 a.m. on and off. I then called his nurse for his condition and will be getting ready to go back in and be with him.

As I stated in an earlier post, he had had his second dose of Mylotarg on Tuesday afternoon, so I'm not even sure if this has anything to do with the drug or not.. I will be trying to get with the Doctors at Fred Hutchinson for more information regarding the side effects in more depth.

As usual everyone, I just ask for your prayers. This is pretty scary stuff when one tries to go it alone. It helps so much to know that there are prayer warriors out there holding us up in prayer when we can't do it ourselves...I promise to keep you as informed as possible. When I know, you all will know!

06/30/00 ~ Friday P.M.

Hello to all our wonderful friends and family.

Well, those prayers most certainly have been heard today. Cees is stable and resting better tonight and they have moved him to a regular room on floor fifteen at Virginia Mason Hospital.

After many, many units of packed red cells, platelets, plasma and other sundry items, they have gotten his blood chemistry fairly stable. They did an endoscopy this a.m. and found the source of the bleeding. He has a nasty case of gastritis and the stomach and upper G.I. tract is very irritated. Because of his low platelet counts he is bleeding from that area. They are now in the process of attempting to heal him with appropriate medication and keeping his platelets and red cell count in semi-normal range with transfusions. I sure don't know were they are getting all this A-Negative blood, but we say a prayer of thanks to the precious person that has taken the time to provide it. They aren't even aware of their gift and what it means....

Cees was finally taken to his regular floor this afternoon around 4:30 and as usual, all the nurses were lining up to sign up to take care of him. Even his Doctor is jealous. He says, "They don't ever treat me like that." Cees was willing to trade places with him, but he graciously declined....hmmmmmmmm.

I am going to keep this very short tonight as I am really exhausted. I'm putting on about 3 hours sleep total and can't wait to plant the head on the pillow.

Thank you, thank you, thank you for all your precious prayers...I know I've said it before but can't reiterate the depth of gratefulness for prayers so willingly offered in our behalf. I know that the Lord hears them all....May God bless you richly for you caring ways...

07/04/00 ~ Tuesday

Hello to all our wonderful friends and family.

Cees remains stable and semi-comfortable, although hungry, as they continue to have him on a liquid diet. They are trying to keep the G.I. tract as empty as possible along with a drug to reduce the acid in the tract to enable the area to heal. They continue to give him platelets and packed red cells to keep his blood levels up to stabilize and encourage the healing process.

He's kind of in a catch 22....the chemo has caused the drop in the blood counts, as it is intended to do, but the low platelet count and rawness of the G.I. tract from the gastritis has allowed the area to bleed. The only thing they can do at this time is to continue to infuse until his own counts start to come up. He does have some cramping after his hefty meal of bouillon, Jell-O and juice...but seems to be passing a little less blood and not as frequently as before...this is a GOOD thing.

He really misses being home, it makes for very, very long days just watching 3 television stations and doing crossword puzzles.  He has really never been one to be able to just sit around and do nothing.  He has always had to be doing this or that or feels like he has not accomplished anything for the day.. I try to remind him he is doing something very important and that is "trying to get well and heal" but somehow he says, it's just not the same.

Today I am going to visit my son's soon-to-be in-laws. They had invited us to a family get together on the lake they live on. I am so pleased to be adding a family to our family that has similar values on the family unit and enjoys being together on holidays and every day. When you come right down to it, family is the most important thing in ones life....next to health I think, without these two things, one has nothing.... Since Cees can't be there with us I will be leaving and going in to spend the rest of the day with him. He has a room that looks north over Lake Union and we will be able to watch the Gas Works park fireworks from his room along with Myrtle Edwards perhaps. I have some super balloons to take into him and can't wait to just snuggle up on the bed and watch the fun.....

Cees' birthday is this Saturday, July 8th, and his youngest daughter, Denise's is Sunday, July 9th. I think she is coming up to be with her dad so I hope that maybe he'll be able to at least have a bite of his birthday cake... Not the best way to celebrate your birthday, in the hospital, but we are grateful that we can celebrate the day with him....God has been so gracious in giving us this time together...we continue to lean on Him for our strength and support...if it weren't for Him we would be totally lost....!

07/07/00 ~ Friday

Hello to all our wonderful friends and family.

Well, to make matters more difficult, they actually took Cees off ALL food overnight. They have called a gastroenterologist consult tomorrow for his gastritis. It's been a week now and it seems as though he may be getting a bit better...not losing as much blood as fast... We'll know more tomorrow after the consult. He was complaining about not even having his wallet or a credit card to go out and order in a pizza...so you can see he still has his sense of humor...but boy, when they start messin' with his food, they are treading on thin ice. Although he is willing to cut back on the heavy duty menu, he was getting kind of used to his bullion, jell-o (without carrots, LOL) and juice... He is definitely looking forward to a little heartier fare pretty soon...especially since he said his taste was just starting to return...

Cees' birthday is on Saturday and we are hoping that they will allow him to have a little bit of solid food but if not, I'm sure they will start him on supportive feeding via his central line. After all, I kind of like that little bit of inch to pinch so we don't want him to lose too much weight and that will help a little.

His daughter, Denise has a birthday on Sunday and will be up here from California to help celebrate with her Dad...the other daughter Shelly is coming up too just because she loves a party...well, and her dad too...so it's a win, win for her. A party and another visit with her dad....! I'm thinking his room may be pretty full Saturday night...even his American Eskimo dog "Ruby" is going to get to make a visit....She has a very early show on Saturday morning so being as she will be so very clean from her bath, Doctor said she can come and visit in the "Family Room" at the hospital... I know that he will be so very excited to see her and her him. She doesn't eat as well when he's not here...so maybe this will pick her appetite up too!

I don't really have any new information friends, but I promise to post it as soon as I do....I'm as much in the dark here as anyone...but Doctor is going to do another bone marrow biopsy next week and then we will go forward on another plan. We do know that there continues to be blast cells in the peripheral blood so it looks as though the Mylotarg didn't work in this case... I am just kind of numb right now, but we are still hanging on to the hope and knowledge that our precious Lord has a plan for us in all of this.. Whether it's the course we want to take or not we are in it and continue to look to His direction. He is the one that has taken us this far and will continue to be there for us as the needs arise.

07/11/00 ~ Tuesday

Hello to all our wonderful friends and family.

It's been a while, I know, since I've updated our webpage...not too much information has been coming my way...it's difficult to pass on what one doesn't know.

I can tell you that we had a wonderful day on Saturday, 7/8/00. It was Cees' birthday and his day nurse, Nancy, had surprised him by decorating his room with balloons and crepe paper while he slept. When he did wake up he saw her standing there with the biggest grin on her face saying "Happy Birthday" She was so tickled to be able to do that for him and it certainly started his day off in a special way.

He had had quite a few special visitors that day, including two of his favorite off-duty nurses. They had taken time out of their day off to stop by before going out to wish him a "Happy Birthday" and bring by a GIANT Mrs. Field's Chocolate Chip Cookie. Now, he's been able to have semi-solid foods for a few days. Things like, cream of wheat, Jell-o, custard, strained soups and such...and even though the cookie was a BIG temptation he left it to the nurses and staff on duty to put a end to it....

Our daughter, Tracie, had asked me what his favorite cake was and I told her carrot cake. She made him the most fantabulous carrot cake I have ever tasted...and he was able to have just a very tiny piece....it most certainly finished off his special day, food wise.

What made his day the very best, I think, was his visit from his girl "Ruby". She was able not only to go visit, but was able to actually go in his room and spend a few hours....I have some pretty special pictures of the whole day...but with everything going on I've had trouble getting them scanned....I'll try to do that and post them to the page...

His daughter, Denise, who's birthday was the day after her Dad's and daughter Shelly was able to be back up from California for the celebration. His son, Don, who lives here in Ballard, was also here along with our daughter Tracie and her family and our Son Jeff and fiancée' Jennifer.. To say the least, he said it was one of the best birthdays ever...he said he had a wonderful time..

Sunday was a day to relax and rest.  I think we kind of tired him out on Saturday. I guess on Sunday after I had left to go home they had taken him in for a chest x-ray to see why he was having some difficulty breathing. He has had a low grade cough for the past couple of weeks but it had begun to get worse. He had continued to have low oxygen saturation and was using oxygen but at a fairly low setting. Doctor was in on Monday while I was there and said they would do a bone marrow biopsy to see where we were at with his treatment and they would do that around 1:45 on Tuesday and meet this Thursday to discuss the results and our next steps.

That didn't happen today as his oxygen sats dropped to the low 70's and his white blood count doubled overnight to the high 40's.  Normal WBC should be between 4-11 which means that the blast cells are growing fairly rapidly...these are calculated in the total WBC. His red cell count and platelet counts are not coming up as they should. I think that is because the marrow is too full of the blast (cancer) cells. He continues to need packed red cells and platelets about every other day now though instead of everyday.  They have upped his oxygen to 6 liters and he remains saturated at 91 to 92. Doctor did say that if the nasal tubes didn't keep him saturated they would move him onto a face mask and if that didn't work the next step would be a respirator.

Dear ones, you need to know that if that's the case, Cees has made it very clear that he does not want to be put on a respirator or ventilator....he said he would much rather just move on to be with the Lord than put us or him through that. Quality as well as quantity still reigns high in his decisions regarding his treatment choices. He continues to keep a good attitude, although he was pretty depressed today...he says he's still in this fight but knows just how hard it is going to be. I continue to stand in awe of his perfect peace about all this and he continues to be my cheerleader when I can't remember the cheers..

They have called in a lung specialist, who finally came in way late tonight, after I left of course, to try to determine what is going on. They supposedly have ruled out pneumonia via a chest x-ray but will need to do a bronchoscopy to actually see what is going on in the lungs... It may be an infection, however, there is no temperature to indicate one. It may be bleeding into the lungs from low platelets. They think they may have the bleeding in the G.I. tract stopped or at least slowed down. But to tell you that I know anything right now would be lying....I am as much in the dark as to what is going on as is Cees....

They will do the bronchoscopy tomorrow and we have a time scheduled with his main doctor at 5:30 p.m. to go over the results....just so you know, we all will be there with him. His children, their spouses, my parents and myself. We will make sure that no questions will go un-asked or un-answered. To leave there with questions still un-answered serves no one and only makes it difficult to make the hard decisions one needs to make..

Precious friends, we know that we are wrapped in so much love and prayers right now...I couldn't be writing this if I didn't know that...what tomorrow brings is unknown, but what we do know is that the Lord holds the answer and has our situation tightly in His hands...God does not make mistakes, His ways are perfect. Even at a time that seems so out of control that one can't hardly breath let alone take another step, he carries us. He loves us, He loves you, and I just don't know how folks would ever get through such difficult times without Him in their lives. If you don't know this special love, Cees and I both pray that you would take a moment and ask Him into your life. He truly is your ever after....

If you sign our guest book please try to not make it a private post. Even I am having trouble getting in to be able to read them when they are made private. There has been a bit of problem with my guest book...I think it's on the server's side...but please, try and sign his guestbook. He really enjoys knowing you have stopped by to catch up on the news...our counter shows that many have visited, but not who they are, so signing the guest book helps him to know you've been there. He enjoys having me read your posts back to him and holds them close to his heart.

07/13/00 ~ Thursday

Hello to all our wonderful friends and family.

I will need to make these postings brief as most of my time will be at the hospital today and on. We had our family meeting with the doctor last night...they did not do the bronchoscopy opting to wait until after we spoke with the doctor and our family.

Cees' white count is climbing which means the cancer cells that were not killed with this last chemo is growing at a very fast rate. As of this morning they are at 108, up from 73 yesterday, and should be between 4 and 11. He is having difficulty with his breathing because when the cell count gets that large they get sticky and begin to stick to one another. They are sticking in the lining of his lungs making it difficult for the oxygen to get through. He is on a mask for oxygen and receiving more blood and platelets today and lasix to help remove any extra fluid on the lungs as much as possible.

We were only given three options yesterday, none of which look good. One is to do just supportive care, blood, platelets and oxygen but only to the point of a face mask. Cees does not want to be intubated and wants loved ones to know that whatever happens he is at peace with this decision. Option two which gives a little better relief is to take a drug called Hydroxy Urea. It seems as though it helps to reduce the blast cells in the peripheral blood for a time and can add some quality days, weeks or possibly months to his time here with us. Our third option was to do more but different chemo-therapy with other drugs that may or may not address these insidious cancer cells. However, it raises his chances for more bleeding, pneumonia, infections, etc. with not much chance for a cure let alone a relief from the obvious concerns and in fact, could shorten his time with us even more.

Cees has chosen option two and they are ordering in as we speak. Right now his WBC count is very high, he is on oxygen and is being made comfortable. If this drug is going to work his nurse says we should start to see the white count start coming down by tomorrow. I will probably be staying overnight with him tonight and for as long as he needs me there.

Loved ones, so you know, all of his family and our pastor was there last night with the doctor. We got all our information first hand and the doctor was forthright and upfront with us. We had family prayer before our meeting and after our meeting and I know that the Lord is in the midst of this terrible storm even though I can't see it right now. The amazing part is Cees' calmness and strength he gives back to me and his family at a time he should be saving it for himself...

My parents are here with our girls (the dogs) and they are here for me. Our children are having a pretty tough time with all of this as you can well imagine. We have a wedding planned in August on the 19th and Cees just has his heart set on being there. We hope and pray he can be but that is left in the Lord's hands.

I will try to update when I can, but for now, being as I don't have internet access or a laptop for the hospital...I will only be able to when I'm home. My folks will be here if any of you need to talk. We know that there are many, many loving folks out there offering prayers and at this point I think that is all anyone can do. We love you so much for those offered.  I'll keep you all updated as much as I can.

God Bless Us All! 

07/14/00 ~ Friday

Sweet friends and to my dear family,

My heart breaks as I make this final entry. Please click on the following link for the latest information on Cees.

Claude Everett Crawford  

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