I guess we have been given another opportunity to fast and pray for a miracle. Today Van went to the hospital for a battery of tests to make sure he was ready physically for the transplant. (See picture - 21 vials of blood) Everything was going well, until we met with our Coordinator. She had just found out this morning that some things have been detected in our donor’s blood and it will have to go for further testing and may possibly disqualify him as a donor. So the transplant has been postponed indefinitely. We do have a Plan B but it entails using a 9 out of 10 match, which will cause a lot more problems after transplant.
They took another bone marrow biopsy today to see if Van has leukemia in his marrow right now. This will help the Doctor’s determine if they will start another round of Chemo while waiting for a future transplant. So, all our appointments have been cancelled for the next two weeks while we wait and pray for a good donor.
We have been able to find some fun things to do during our Spring Break. Saturday, Van went and watched the girls play tennis. Usually he is right out there with them and I had to give them strict orders to not let him hit a ball. So he watched and critiqued. We rented quite a few movies from our neighbor (for free) and we've played "Movie Theater". It is where we pop popcorn, make drinks and treats and watch shows together as a family. We went to Provo to see our oldest daughter and her husband. They took the kids to the Dinosaur Museum on BYU campus; we had a wonderful dinner and family night together. A fantastic brother in our ward, videotaped Megan (our 16 year old) performing at her first ballroom dance concert last week. We’ve been watching that and loving it.
We even had a ride on a huge fire truck, went down the fast fire pole, and sprayed the fire hose all because our home teacher and Bishop is the Captain of the fire station. I’ve decided it really isn’t the money you spend for Spring Break activities or the places you go, it’s the memories you make with your children having “wholesome recreational activities”. (The Family: A Proclamation To The World).
Van went to the hospital today for labs and he is doing so well they couldn’t believe it and sent us home. He has very little nausea or pain these days. He should have a great two weeks. Today, they moved his transplant up two days because of the donor’s schedule which inadvertently means he isn’t backing out. So now he starts pre-transplant on Monday, April 19th. We can’t wait! We are so excited to see the Lord’s hand work in our lives again! A friend brought this quote to our attention: President Boyd K. Packer said, “If you are helpless, he is not. If you are lost, he is not. If you don’t know what to do next, he knows. It would take a miracle, you say? Well, if it takes a miracle, why not?” We fully expect miracles in our lives. With everyone’s faith and prayers they will happen.
Van came home from the hospital today. They gave him only 2 pints of blood because the rest of his counts are starting to come up on their own. We are so excited! This means we should have a wonderful Spring Break with our children. General Conference is this next weekend (our favorite time of the year) and we are so excited to watch it together with our family. We are trying to figure out something we can do as a family each day of our break. It can’t be in a public place with crowds and germs. However, it can be outside if the wind isn’t blowing and all within an hour’s drive of the hospital. As limiting as this may seem, we are putting on our thinking caps in order to find something creative to do each day of the week that Van can participate in.
Friday, April 16th, we have a family conference with the head Doctor to discuss the details of the Stem Cell Transplant. This is where all the family members who will be Van’s care givers come to ask questions and learn what they can expect after transplant. Wednesday, April 21st, Van will be admitted to the LDS Hospital to start the pre-transplant regimen which includes 6 days of full body radiation, 48 hours of chemo and rabbits blood to prepare for a stem cell transplant on Friday, April 30th. The next day Olivia, our daughter will be baptized and confirmed. I’ll expand on this and who will baptize her, in the future.
Van speaking: Some friends of ours visited today and brought to our attention this quote from Elder Neil A. Maxwell, which is so fitting. “One’s life . . . cannot be both faith-filled and stress-free. . . . Therefore, how can you and I really expect to glide naively through life, as if to say, ‘Lord, give me experience, but not grief, not sorrow, not pain, not opposition, not betrayal, and certainly not to be forsaken. Keep from me, Lord, all those experiences which made Thee what Thou art! Then let me come and dwell with Thee and fully share Thy joy!’ . . . Real faith . . . is required to endure this necessary but painful developmental process.”
Even the Savior asked that the bitter cup be removed. But we all know that God in his wisdom, did not remove that bitter cup. You and I are extremely grateful that it wasn't removed. I don't know of a single example in the scriptures where the Lord took away someones trials. But I know of many, many instances where he strengthens individuals so they can better endure -- then through faith and patience they are eventually delivered. It is my testimony that adversity is the great University of the Lord. If we are serious about becoming like the Savior, then "BRING IT ON"!
People ask me all the time, “How is Van doing?” My reply is great! I started thinking about that. The word GREAT is very subjective. Three months ago when I said "He is doing great" is totally different than at this time. Now, when I say he is doing great, he probably has only thrown up once in the last few days, he’s had a blood and platelet transfusion, his white blood cell count is zero so he doesn’t have an immune system and he’s bald and tired all the time. But he is doing GREAT! It’s the new norm!
This afternoon Van had his first fever scare. I took his temperature and it was 100.6, I called the doctor and they had us come into the outpatient to take more blood cultures (7 bottles of blood). His temperature was normal when we got here but decided to spike right before we were supposed to leave. They are worried about infection especially since he doesn’t have an immune system. So they checked us into Hotel Leukemia. We even have a view of the Salt Lake Temple. How cool is that?
We wanted to thank everyone for their letters, emails, posts and phone calls. It’s so good to hear from you. When you post to our blog, we immediately receive it in our inbox. So we don’t miss any of your comments, we are always kept up-to-date. I just wanted to remind everyone about the information on the right side of our blog. You can find information about how to post a comment, how to contact us, and how to be a bone marrow donor. Thanks so much for your love and support.
In the last few days, Van had a platelet transfusion. He was seeping blood out of his central line because it couldn’t clot. After the transfusion, he was trimming the rose bushes and accidentally brushed a thorn against his face without knowing it. I looked at him and saw blood on his face. He quickly looked in the mirror and said, “Well at least it’s clotting!”. We are always so concerned he could bleed excessively when he has very low platelets. We just laughed and cleaned it up.
We started Neupogen shots that are supposed to help his neutrophils bounce back faster. Some of the side-effects of Neupogen are bone pain and flu like symptoms such as nausea and vomiting. The last time he was on Neupogen he ended up in the hospital with unbearable back pain for three days. This time they told us to stop taking it as soon as we started to feel any bone pain. It only took three shots and Van started to feel bone pain, nausea and threw up last night. He’s been sleeping all day partly because of the anti-nausea medicine he’s taking and partly because his blood counts are at their lowest. It takes 36 hours to get Neupogen out of his system and then he should be feeling a lot better.
We left one of our posters in our hospital room when they discharged us the last time. So they called us and said this poster is waiting for you next time you come for an out-patient visit. This particular poster is of the prophet Nephi and on the bottom it says “Who is your hero?”. The nurse practitioner attending that day asked Van who is this person? Is he your hero? He answered, “Yes, that’s Nephi”. Then she said, “I thought that Nephi was just a little town in Utah.” He then answered, “The town Nephi is named after this person.” He was then able to teach her about the Book of Mormon, which is a record of ancient peoples who lived on this continent and Nephi was a great Prophet among them. Just another missionary opportunity for my amazing missionary!
Van is doing well considering the fact that his blood counts are dropping in half every other day because of the Chemo. They are taking us one day at a time to make sure that his levels don’t fall too far. Platelets are responsible for clotting in the blood and since they have dropped so far, we have to go back tomorrow and we will probably have to receive more. I LOVE driving back and forth to Salt Lake every day– NOT! I don’t know how commuters that work in Salt Lake do it? But one positive thing is, we get a long talk date every day (in the car).
When we told the Doctor today that Van has been experiencing cold sweats and chills, he decided we needed to do a blood culture. I had no idea what a blood culture was until today. I have included pictures. Van’s central line has three ports and one of these ports might be harboring infection, so they have to take blood out of each one. These bottles have chemicals in them to begin with and then add 10 cc's or so of blood to each one. They will be tested and results will be back in 24 hours.
They started his Neupogin shots again (it speeds up the white blood cell production). Megan, our 16 year old daughter, is giving him the shots every day because she wants to be a nurse. I (Wendy) would rather not give the shots if I don’t HAVE to. Last time we started these shots, on about day four, he started with horrible bone pain. So the Doctors have been researching and found a few patients that took Clariton and felt it helped. So they started him on it for the last few days to see if there is any truth to it. I LOVE how the Doctors are always researching and trying new things.
Today was a very busy day. Van started out with an x-ray because the Chemo that he takes orally every day can sometimes cause fluid in the lungs. He’s very weak and they are having him walk so they don’t end up giving him shots in his stomach to keep him from getting clots. So he walked by his wheelchair all the way to x-ray which is on the opposite side of the Hospital. Needless to say, he took the wheel chair back to his room.
For the next week all his blood counts (red blood cells, white blood cells and platelets) will plummet. Today the blood levels got to a critical level so he received two blood transfusions. The first bag of blood was AB- and he is AB+. They assured us that this was ok but just into the second bag of blood he started getting a rash, itching and a few symptoms that were concerning. So they gave him some Benadryl which made him light headed and tired. But it seemed to be working. Van said, “The negative blood doesn’t work for me because I’m such a positive person.” They took his levels again and they were up so they let us leave the hospital for a day and a half. We will go back to the out-patient clinic every other day until they feel comfortable his counts are going up.
The lady next door to us passed away this week and the man on the other side of us coughed all night long, and ended up in ICU this morning. After this, Van said, “I am so thankful for MY Leukemia”.
We were talking to the nurses today trying to figure out how we can reserve a certain room for our 1-2 months stay during transplant time. So this is the question of the day. “How DO you make reservations at Hotel Leukemia?”
Some wonderful and kind people have opened a donation account at Zion’s Bank in Van’s name to help with medical expenses. If interested just call or go into any Zion’s Bank and tell them you would like to make a contribution to the “Van Heder Donation Account”.
On December 30, 2009, Van was diagnosed with CML (Chronic Myelogenous Leukemia) in blast phase which will require a bone marrow transplant. A match was not found in a sibling or non-related donor so he was scheduled for a double cord blood transplant on May 14, 2010. Due to complications, he passed away at 2:38 p.m. on June 9, 2010.
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Visitors & Flowers
Visitors are welcome under these circumstances: healthy and not exposed to someone sick in the last 24 hours. Please no flowers or plants because they could carry bacteria or latex balloons. Thanks.
