http://www.destinysakheart.info
contact@destinysakheart.info
http://www.destinysakheart.info
contact@destinysakheart.info
May's Daily Journal
June's Daily Journal
July's Daily Journal
August's Daily Journal
Monday September 3, 2002
I pray everyone had a safe Labor Day weekend. We did stayed at home and relax did some cleaning. Enjoyed the company of family. Destiny is moving like a train on track just moving down the road. This friday will be the day to draw her next set of labs to send to Stanford. No matter what the levels are I am blessed to have every day. We wait for the results from California. I need to share with all of you that I don't know if I can watch Destiny go through another IVIg treatment for the last two months she is having reactions to this medicine it is taking her longer to come around and out of the meds that are given. I am praying really hard for the decision actually I have been praying for confirmation to be written in the sky to put her through this again. Its a big prayer but I sit and watch how it takes it toll on her body it is breaking -but how do I stand before GOD and say I made the choice for her to not to continue taking this medicine when it is his will to walk me through this and guide each and every step. I need to sit and fast for a couple of days in prayer to get some answers. Please pray that the answer will be what the Lord wants not what I want. I need peace over this and the best for Destiny. I see her in hospital bed and my heart is breaking how can I ask her to go back. How much can her spirit take? I pray that she does not suffer. There are many children out there receiving prayer every day of there lives, I have met some wonderul families with children receiving a lung or heart transplant with small children close to Destiny's age. I keep them in our prayers. I know that Destiny has a mission here on earth and in our lives and I know her work is not yet done. I watch her dance around the house and bust up laughing to the life she gives to the smile she offers and her undying love she brings to everyone she meets somedays I forget for a brief moment how she is on so many daily medicines to keep her alive and how normal she looks. We are scheduled to see Dr. Wellmann tomorrow and he is not doing an echo WHY I don't know. I will post tomorrow evening to let you know. I realize how I often blast Dr. Wellmann when I am upset or concerned for Destiny but this is my child's life I am her LAST VOICE. Please know that this doctor loves Destiny dearly and would not hurt her or put her in any danger.
Dr. Wellmann is very humble, I can see what type of mood he is in to how he walks into a room you hear the saying your eyes are the window to your soul - you look into his eyes and you can see he loves GOD. He is a good friend who is getting married in November I pray many blessing FOR them since everyone knows there business at the hospital. Good Night and God bless will talk tomorrow. We'll see you when we see you.
Thursday September 5, 2002
Well as some of you might be wondering I did not go to our appointment yesterda. I called the office let Dr. Wellmann know her weight no changes he was going to make in her medicines and he was not going to do an echo I could not bring myself to take her to the hospital and have her catch a cold. We have an appointment on the 18th for an echo and pacer check. I understand the need for the doctor to see her every two weeks but as a mother I also see the need to protect my child. So tonight I am sitting here and our evening nurse starts Destiny chemo and takes her vitals this little turkey is warmer then she has been her temp is up its been 96 to 97 tonight was 99 the nurse says she looks a little pale so I eat humble pie and call the doctor around 8:45 pm have him paged and let him know what my nurse has said. I am watching for anything else and no urping, she is up and playing other then the warm temp she is full of peanut butter and jelly. So we end the phone call and I will keep an extra eye out tonight and call in the morning if anything happens. Now you and I know had I taken her in yesterday for him to listen she would not have a low grade fever tonight so I sat down with Destiny for bedtime and we said our prayers and now I feel better for turning it over it is no longer on my plate. Tomorrow is the day for PRA, CBC and CMP labs. I have come to except what will be will be. I want all of you to be strong and feel the peace. This is the will of GOD. I am not alone as I walk down the hallways of the hospital I lean on the LORD every step of our journey.
Think of all those who don't know the LORD I can't even begin to image how dark there path is.
Hold your index finger up and sing "This little light of mine" I'm gonna let it SHINE!!!!!!!
Sing and rejoice for you have the Lord in your life.
For the last couple of nights Destiny is helping the nurses with cleaning her central lines at the tip with alcohol pad and then when its time for her injection she is starting to wipe the site on her tummy to where she wants it to go I tell you she is an adult in a kids body. I look into her eyes and it tells me all I need to know its ok mommy I can do this. Some nights I even let her help push the flushes so she can have some control. I am looking into her soul tonight and I know it is ok whatever the test results may be. I just know what I know. I am very blessed to have all of you in our lives for the friendship and prayers and fellowship you give to us. God protect our friends and give them many smiles through out the day. In jesus name I pray.
Friday September 6, 2002
Well as many of you follow what is going on today I feel very beaten down. Our nurse drew labs this morning and got them to the hospital no later then 10:37 am the lab did not clock them in until 10:57am so the lab calls Dr. Wellmann's office says they did not get the labs in time to mail out. Then the lab says we have been taking them to the wrong lab at the hospital. So one of the ladies in Dr. Wellmann's let them have it from me and her that this sample has to go out today logn story short the blood was sent then Dr. Wellmann's office was notifed that there is nobody at Stanford's lab over the weekend to receive it. So the delivery company wanted to know why the blood was being sent out on a friday because it was two weeks ago the last IVIg treatment was given. So now we will probably have to redraw all four labs and then get them to the hospital sent out lab before 10am. Do you know that not once in 5 months has there been a policy by providence hospital to what time the blood has to be there by in order to go out, or which lab to drop it off at I have my nurses taken it to outpatient lab I never knew there was a sent out lab. Then not to mention in June that the labs were drawn on a saturday and forgetten for 5 days before the lab even call the doctors office to ask where they go. So if I am on top of what has to be done and when can you image how many other families just trust the lab to get it right now I can forgive a person for error but to keep making new rules and new errors every month I can not longer sit still . I am in the process of writing a letter if I don't fight for my daughter's life and raise my voice what is going to happen to Destiny's test and any other child's labs for send out. I can help one family from my voice I am doing the right thing. Every month for the last four months its has been one thing or another the only time I had no problems is in May when I flew to California and hand delivered the blood samples myself.
Saturday September 7, 2002
So I have had time to clam down I still writing my letter and rewritting I do not want to snap a judgement I am writing this to bring to there attention what has happen I would like a procedure to the time and where to drop it off at. Destiny's lines are very slow I worry about them clotting even if we are very careful and using the meds to keep them open. So we should hear from Stanford monday if they received the blood and if it is still good or if we have to re-do it. I will Dr. Wellmann's office and see if the CBC & CMP were good or if we have to re-do them as well. I will keep you all posted. Thank you all for all your giving you give to us. I went out to dinner tonight with Nancy Eberle upon returning home I come in the door and Destiny see my take home container and goes mom did you bring me chinese food. Everybody just cracked up laughing.
Sunday September 8, 2002
I am sitting here Destiny has just gone to sleep we had to say prayers twice she didn't want to go to bed. After she was asleep I was praying myself and spending some time with the Lord, as I turned my plate over to him and was asking for his strenght and guidance in helping me be strong and be able to take my steps I look up and on the tv is a commerical now wait- it is singing the song 4 worship " Shout to the Lord", " My GOD is an awesome God", "Shine Jesus Shine" I sit and sing along with the songs and know it will be ok.
The days I am weak and ask for help he is strong, I asked for forgiveness for my tongues in not being able to hold it at times and to the people I have hurt with judgement. I am borrowing a quote I heard while in the hospital this last stay I do not know who wrote it.
"You may only be one person in the world however you may mean the world to one person. "
how true that is for the love of the lord. John 3:16
God gave us his only son for us.
I am going to order that CD Songs 4 worship.
Monday September 9, 2002
Praise GOD, this morning upon calling over to Dr. Wellmann's office the CBC and CMP blood work was good and the lab was able to a good sample. I have not heart from Stanford today if they received the blood and if it is still good. I'll wait. I also received a name of one of the board member over at providence hospital who I am going to address my letter to and carbon copy (CC) it to four others. The first board meeting for the hospital is next week Thursday.
Tonight we went over to the Eberle's and picked raspberries and roasted marshmellows afterwards Destiny had a blast she took her cousin Jordan, the nurse Karen and myself tonight. While the sun is out it is warm but as the sun is going down or if you are in the shade or even under the trees it is cold. It is getting into the 40's or high 30's at night now for those who do not live here. The leaves on the trees are turning yellow and dropping to the ground summer is over we are into fall which means I am not allowed to use the four letter word --ow. Last night after posting I ordered the SONGS 4 WORSHIP. Today I made a reservation for Destiny's "3" birthday party at the bowling rink at the Dimond Center. I have reserved the whole place for a couple of hours I am also going to make this a fundraising party for her I am going to contact KTUU one of our local news channels here to see if they would be interested in doing an update from since the last interview was in May. I have thought about putting a article in the newspaper here in Anchorage, Alaska and in my hometown of Rio Vista, California I have many people as yourselves to thank and know how much we care. Your support is felt each and every day and it carries us many days it is incredible to read the emails, cards, and letters you send. I have come to accept we will not have a transplant but pray we can keep Destiny going to replace the pacer, wires and leads on her heart and give the life. She has certainly given us that in ten fold.
God Bless you and protect you through your day,
Ruth and family
Wednesday September 11, 2002
Stand tall to be an american today. Many families and friends are remembered today as well as everyday I pray for all of them and extra prayers over the children. Yesterday I was a little concerned that Destiny looked pale so I made an appointment today with Dr. Wellmann thank you Lord for allowing us the time. We pull into the hospital parking lot and Destiny says yeah were at the doctors house, Destiny is 26.5 today Dr. Scott says she looks and sounds great he received copies from the labs her redblood cell count is low he is going to keep an eye on it and if it goes lower he would like to give her a blood transfusion to help her body. Her little body is producing red blood cell but they are low and need a little pick me up give her to much engery and I will need more then a pick me up. We have our echo and pacer check next week. Destiny was running around the office and then all of a sudden she ran up Dr. Scott and wanted to be held so he picks her up and she lays her head down on his shoulder and just stayed there for a few minutes I told it was time to go home she wanted to stay. I am very blessed to have doctors who care so much for her and that she loves all of them its not like no mommy I don't want to see the doctors or the hospital Destiny always goes YEAH I see the doctor today. No news from Stanford yet.
Friday September 13, 2002
Well today I needed to know if Stanford received the blood and if it is good. Yes they did and they were able to run the PRA------the test came back 100% this is not what we prayed for but let me remind us all that in May the doctors said they have done all that they could do and look we still have our miracle by the power of prayer. As of today Dr. Scott is out of state on monday 9/16 he will write the orders to have the chemo stopped and we will not be going to the hospital to run the IVIg monthly either. We are going to continue to give Destiny ALL of her meds by IV form and pray to keep her healthy enough to undergo surgery to replace her pacer, wires and leads the battery has 7 months no more then 12 months of battery. Once again I am going to ask we return to Seattle. I returned to work full time about a week and a half ago my boss and his wife are thee most supportive employer I could receive. At this time I would like to ask for your prayers that Destiny does not suffer in anyway. I pray for strenght and courage as this day was hard. I realized the hurdle it was when the doctor told me in March Destiny would need a transplant but for that window to close and be told a transplant is not possible is hard to swallow. I have a big focus to plan a party for Destiny now I am welcome to your suggestion to what we could do pleae email us with your ideas. How bless I am to have my family all together in one house and in one state. I have met alot of wonderful people down this journey and will continue to meet even more. I received a poem today called "The Heart" Author Unknown I emailed to some of reading our update I will post on the website tomorrow for now I am going to put on foot in front of the other to go catch some zzzzzz. Thank you all sweet dreams God Bless,
September 14, 2002
Today is a brand new day, we sleep sound last night I did not even hear our nurse knocking on the door thank God my sister's room is by the front door. We are going to bake some cookies today. I emailed the poem to many of you last night I am going to post it as I sat down last night to open my mail here was this poem and I was able to cry really hard to let down and release my tears for the next time I need them. This is very moving for me enjoy,
The Heart
"Tomorrow morning," the surgeon began, "I'll open up
heart..."
"You'll find Jesus there," they boy interrupted.
"The surgeon looked up, annoyed "I'll cut your heart
open," he continued, to see how much damage has been done..."
"But when you open up my heart, you'll find Jesus in there," said the boy.
The surgeon looked to the parents, who sat quietly. "When I see how much damage has been done, I'll sew your heart and chest back up, and I'll plan what to do next."
"But you'll find Jesus in my heart. The Bible says He lives there. The hymns all say He lives there. You'll find Him in my heart."
The surgeon had had enough. "I'll tell you what I'll find in your heart. I'll find damaged muscle, low blood supply, and weakened vessels. And I'll find out if I can make you well."
"You'll find Jesus there too. He lives there."
The surgeon left.
The surgeon sat in his office, recording his notes from the surgery, "...damaged aorta, damaged pulmonary vein, widespread muscle degerneration. No hope for transplant, not hope for cure. Therapy: painkiller and bed rest. Prognosis:," here he paused, "death within one year."
He stopped the recorder, but there was more to be said. "Why? he asked aloud. "Why did You do this? You've put him here; You've put him in this pain; and You've cursed him to an early death. "Why?"
The Lord answered and said, "The boy, My lamb, was not meant for your flock for long, for he is a part of My flock, and will forever be. Here, in My flock, he will feel no pain, and will be comforted as you cannot imagine. His parents will one day join him here, and they will know peace, and My flock will continue to grow."
The surgeon's tears were hot, but his anger was hotter. "You created that boy, and You created that heart. He'll be dead in months. Why?"
The Lord answered, "The boy, My lamb, shall return to My flock, for He has Done his duty" I did not put My lamb with your flock to lose him, but to retreive another lost lamb."
The surgeon wept, The surgeon sat beside the boy's bed: the boy's parents sat across from him. The boy awoke and whispered, "Did you cut open my heart?"
"Yes," said the surgeon.
"What did you find? asked the boy.
"I found Jesus there," said the surgeon.
Author Unknown
Jesus said, "If you are ashamed of me, I will be ashamed of you before my Father..."
I AM Not Ashamed. Pass this on only if you mean it. " Yes I do Love God. He is my source of existence and Savior. He keep me functioning each and everyday. Without Him, I will be nothing. Without him, I am nothing, but with Him I can do all things through Christ that strenghtens me." (Phil4:13)
September 19, 2002
Well here we are almost a week has passed and we are enjoying everyday we are given. The sun comes out every morning we take one step at a time. We went to see Dr. Wellmann on Wednesday 18, for a echo, pacer check, a weight check. Destiny is about 26.5 pounds she did not gain much from the last appointment so we are going to change the rate of her TPN at night to up the volume. The echo went well Destiny just lays there and waits until the doctor is done every now and then she will ask if he is done yet then when the doctor finished he said all done Destiny goes mom all done its so cute. The pacer check was in order the pacer has 6 months as a beginning no more then 11 months upon asking the doctor we are looking at the 6 month mark to replace the placer Dr. Wellmann has been in contact with one of the doctors at Seattle Children's Hospital and keep Dr. Shaw up to date each month with the read out from the pacer machine. Afterwards Dr. Wellmann and I talked about setting into order a Comfort Plan and a Advanced Directive this will let the hospital know and the doctor know what to do in the event I am unable to be reached this will let the EMT's/firemen know what to do if they come to our house. This is something to have in order so everybody is on the same page. Dr. Wellmann and I discussed the next appointment will be scheduled in three weeks unless I need to see him sooner. Today 9/19/02 I called Dr. Wellmann because Destiny was a little warm with a temp 99.8 under her arm after some meds and care at home her temp went down this is something we keep an eye on. We had labs drawn I hand carried these down to the lab to run her CBC and CMP. I will need to contact the doctor on Monday to see how her red cell count is last week he noted if it continued to go down she would need a transfusion. This is something I am watching as well. I'll type soon, Thank you all and God Bless
Tuesday September 24, 2002
I did not go anywhere I just a brain fart. I felt like I hit a brick wall for months I had such a focus to see Destiny have a transplant and after being told her last antibodies test I just needed time to regroup.
We are still heading for PLAN B to replace the pacer within the next six months we will head to Seattle during that time. Dr. Wellmann is in contact with a
Dr. Molly Shaw who is a pediatric electrophysiologist who was involved in her surgery with the placement of the pacer. I have to do some research to see if the new Ronald McDonald housing is up and running or if it is still under contruction I also need to find out if they are having families stay at nearby hotel or what the deal is. OK I need your help there is a family who is need of our prayer this child comes to our office as a patient his family was just told he has a BIG brain tumor and the doctors here in Anchorage will be sending this Eagle River family down to Seattle. The mom will be going with her son I do not know when the dad will be able to go. I am got some information together in a notebook for the mom and a little angel for her to know she is in our prayers. This young boy is 12 years old just started junior high, had braces put on in August, received new glasses a week before his braces were added. If you have extra time I am going to start sending cards to the hospital for this family to know that we are here for them. I provided information to a some website that was helpful to us and a webpage the mom can creat and when ever you update the information it will automatically send a email message to all of those who logged into the webpage for updates. I know there are families we can help through all of this that is what I am going to focus on parttime like when I don't sleep. I am going to put the information into notebooks for families I know who are heading that way. WOW in less then a month Destiny will turn "3" praise GOD for the work he is doing and allowing me to witness and be a part of not to mention all the people who are witnessing to us during this journey. Thank you all for standing by us
I have a quote to end this message with tonight.
"Don't put a period where GOD has a comma."
Good Night and God Bless you all, Ruth and family
Sunday September 29, 2002
Well its early morning I just finished giving Destiny her medicines and I am enjoying the peace. Everyone is still asleep in the house. Time for prayer. Destiny is running like a train she is at 26 pounds, her eating is off and on it depends on what we are having and if she is going to eat or pick lately its been picking.
As my nephew does her homework at night Destiny sits with her paper doing hers too. Our Eagle River family this child's name is Kyle they will be heading down to Seattle this week coming up. I will keep them in prayer daily. For those of you outside of Anchorage its been pouring rain like no other for the last couple of days the leaves are falling fast yards are covered ready to be raked. The "S" word will soon be falling not many people like the word it ends in "now"
because then it means we start our cars early have to clear the windows wear heavier coats and those "s" boots and gloves YUK-- While some of you are still reaching into the high 90's I'm sorry shorts and a hat you better go inside and drink lots of water. I had a surprise over the weekend a friend of mine I went to High School with came up for other family issue but stopped by before she left it was great to see her I also got to meet her husband. It will be nice when Destiny heads to Seattle in March to meet up with them and there kids to take Destiny to the zoo I would also like to take her to Pike Place Market, the Aquarium, and Tacoma Zoo but depending on how she is feeling and how much engery she has we may not be able to venture far from the hospital we'll see. Somebody is going to turn "3" on the 17th of October what a miracle--Stand up and Praise God" everyday is a blessing big or small. At this time I am planning a bowling party let me paint the picture we have family and friends there Destiny will be the one wearing the yellow mask with some kind of winter gloves to protect her from touching everything and I will be the one making sure everyone has on bowling shoes, the ball and ready to bowl however I will enjoy myself. I am going to have a cake made with a picture on it. I am trying to make one picture with different shots on it I have to ask the bakery if they can do that. Destiny's birthday theme is a " A gift of life" those who come can make homemade birthday cards and not present will allowed to come for those of you who just have to do something I ask you buy something for a child and donate it to a child at the hospital in Destiny's name. There is nothing she needs or has to have she is loved and blessed everyday of life she is given. We as a family receive the blessing from her as well. Well I am going to finish and start reading for a while during the peaceful moment I am given. I know my postings are not everyday but there will come a day soon.
Now put your right hand on your left shoulder and your left hand on your right shoulder now SQUEEZEEEEE--thats from us to you. I want you to know how much your emails, cards, phone messages me to us.
