Our Hosptial Room

I’ve decided this entry will be mostly pictures. I’m so excited about our room, I wanted to share it with you. The hospital staff suggested we make our room feel like home. So this is what I tried to do.

This is Wendy's office area, exercise bike, vinyl lettering on the wall and window, a modern lamp for ambience, fake flowers to brighten up our day, the flag to act as a window/door covering that Van had in his Seminary room and which brings him very happy memories.

Our daughter Lindsie Boucher just graduated today from Utah State University with two degrees, one in Elementary Education and one in Special Education. She has been offered
a job to teach Special Education in a Charter School ten minutes from her home. She is going to start substitute teaching 4th graders for a teacher going on maternity leave at the Charter school starting Tuesday. She is really close to getting a job teaching special needs pre-school in the summer. Josh her husband is applying for Medical School this year and hopefully by next fall he’ll have been accepted to a school of his choice.

I don’t think I mentioned that Olivia was baptized last Saturday. We had our 17 year old home teacher Dalyn Harrison, baptize Olivia and Van confirmed her. It was a beautiful day.

We are in room #E853 at the LDS Hospital. Please feel free to call 801-408-3853 anytime. I know Van would love to hear from you.

Van has done pretty good with radiation--just one more day. Only a few undesirable episodes of vomiting and out of control nausea but other than that he is just tired and nauseous every time I tell him it’s time to eat something. So I just order something from the menu and feed him until he begs me to stop. The Doctors want him to eat, because they don’t want to have to put him on TPN (Total Nutrition) through his IV because if you are on it for a long time, it has long lasting side effects. He’ll have to go on it at sometime but hopefully not so soon.

Here we go again

We were admitted into the LDS Hospital for a double cord blood transplant this morning. This is blood from baby girls that were born in 2001. They use stems cells that were in their umbilical cord which have been frozen. When he gets his blood tested from now on it will show he is female – but just with blood. It will be interesting to see Van’s hair line, color and texture of his hair when it comes back. With an unrelated donor you take on their attributes. But these are baby stems cells that haven’t figured out what they want to be yet – red blood cells, white blood cells or bone marrow let alone hair lines. The actual transplant is scheduled for May 14th.

Three days ago we started coming to the hospital every day to get the drug “Kepivance”. It thickens the mucus lining in the mouth and all over hoping to help Van from getting such bad mouth sores after chemo and radiation. He tells me he has very big lips. But he just feels that way because the extra lining is thickening. Some other side effects from the drug are: he has a very tan face, very sensitive hands and bald head that hurt when hot water touches them, rash, and of course he feels nauseas.

Going to Radiation in the basement

This morning they started full-body radiation. I’ve included a picture because I couldn’t believe the contraption he has to be in. Last month they made him lung guards that are made of steel and they hang exactly where they have marked his skin so the radiation doesn’t destroy his lungs. The tissue is so delicate. He stands while they radiate half his body and they turn him around and radiate the other half. They want him standing if at all possible so it is very hard when you want to throw up. He is trying not to sit on a bicycle seat if he doesn't have to.  A piece of plexiglas is in front of him.  He will do this twice a day for four days.

He made it until 3:00 today before he started throwing up. He is pretty miserable. This evening we were already going through the list of nausea drugs he could take and loading him up. They make him sleepy so we don’t get to talk much. He is listening to Hymns right now; it seems to soothe him (and me). I feel like the spirit is just hugging us when they are playing.

Lungs Shields

A friend shared this scripture with us: “My son, be faithful in Christ; and may not the things which I have written grieve thee, to weigh thee down unto death; but may Christ life thee up, and may his sufferings and death, and the showing his body unto our fathers, and his mercy and long suffering, and the hope of his glory and of eternal life, rest in your mind forever.” (Moroni 9:25) This is our hope and prayer also.

Bishop Fivas stopped by this morning, helped us bring our things up to our room and gave Van a blessing. It was beautiful and full of hope. We are excited to be on the road to recovery!  If you don't start the road, how can you recover?

Good news!

Today, we had our consultation with the head Doctor, nurse educator, social worker, pharmacy education, and the financial person. The Doctor said this about Van, “I can’t think of a more optimal position to be in for a transplant.” He is very excited about the two cord blood matches they found. One is a perfect match and the other is a 5/6 match. So when all is said and done this cord blood transplant should be on par with a sibling bone marrow transplant. New studies have shown this to be true. We are very grateful and feeling very blessed tonight.  Today, the Doctor revealed to us that Van was just within hours of death when we were first admitted to the hospital on December 30, 2009.  Needless-to-say we are counting our blessings!


Thursday, May 6th, is when we will be admitted into the hospital for pre-transplant regimen including very harsh radiation and chemo. His transplant is scheduled for May 14th. The Doctor says we should plan for 6-8 weeks in the hospital. It could be more or less. Van is convinced he is going to be out of there sooner. At this point, we will stay at the condo (our wonderful brother-in-law has loaned us) until around day 100 or until they think we can travel to Tooele. The day of our transplant is day 0.


There is only a 10-20% chance of death. So that means 80-90% for a successful transplant. They are hoping in 1-2 years he will be able to resume his normal life.


They are hoping he won’t be sick the entire time and encourage healthy visitors. On our floor there is no limit to how many people, times they can visit, or ages. They just ask that you don’t have any open sores, cold sores or sickness of any kind. I hope that this is not too much to ask? On those few days you aren’t sick, feel free to visit.


We are trying to figure out what he can do in the hospital if he even feels well enough to do so. His favorites would be writing talks, studying the scriptures with someone, or reading good books. Someone mentioned since he loves shooting his gun that playing the Wii hunting game might bring him happiness.


If you are wondering about cord blood donations go to www.marrow.org. Click on “Donate Cord Blood”. This is actually umbilical cord blood, not affecting labor or delivery, but just from the cord. A few things I learned was that you have to start the process before 35 weeks gestation. The mother will have a physical and blood tests done to see if her cord blood is a candidate. A foundation is set up to collect cord blood and it costs $2,500 for each cord blood unit. The foundation will pay for it until it runs out of money. At that point they stop collecting until they have more funds.


I am personally excited to get this show on the road. We have had some great family togetherness time and are ready to fight hard again. I can’t wait to tell you about the things I plan on taking to the hospital. I’m going to be ready for a long stay just in case. I can’t tell you everything yet, because I haven’t received permission for all my list of things.


Van and I are going away together for the next few days. Just the two of us. Thanks again for everyone’s prayers. The Lord loves us all, and we love you.

Thank you

No news is good news. They haven’t changed our transplant date, so we are still on target.

We wanted to thank everyone for supporting us at the fundraiser Saturday. Our kids couldn’t believe they could have as many snow cones and cotton candy as they wanted. Thanks so much to Bishop Mott and his family for providing such a wonderful blessing.


Van is doing wonderfully. He is gaining more and more strength every day. We are trying to fatten him up before he goes in for radiation. The Doctors said that the stronger you are going in, the quicker your recovery is.


Every day is wonderful. It’s amazing how something like this gives you a whole new perspective on life. Alma 38:5 says: “And now my son, I would that ye should remember that as much as ye shall put your trust in God even so much ye shall be delivered out of your trials, and your troubles, and your afflictions and ye shall be lifted up at the last day.” We have absolute trust in the Lord; therefore, we are expecting a mighty deliverance!

Plan C

Today was a BIG day for us. It started off in Radiology being fitted for lung guards. They put dots of ink under his skin in certain spots to mark where the lung guards will go when they do the full-body radiation.

We had a Doctor Consult today and they told us we are on Plan C or D (it’s really the last resort). It ended up that our “perfect match” had a medical problem with his blood and he can’t donate. They don’t want to use the 9/10 match because there will be A LOT of graph vs. host disease afterward. The only other choice is to do a double cord blood transplant. They have this tentatively scheduled for May 14th (Kellie’s 13th birthday).

So far they have one chord blood donor. It’s a girl who was born in March 2001 with A+ blood. She has a lot of stem cells and is a match. But they are having a harder time finding the second donor that has sufficient stem cells. The Doctors have some choices and they are just trying to choose the best one. Adult patients receive a dose of double chord blood because usually only one donor’s stem cells take. Some of the draw backs with a chord blood donor are; instead of grafting in 21-30 days it may take 60-80 days or more. So we will be in the hospital a lot longer. We probably won’t be allowed to come home right away until he is past the critical phase. We will stay in a condo five minutes from the hospital until he is out of the danger zone.

We won’t know how long before he can be around groups of people again. They said at least 6 months. Statistics imply that it may be closer to two years before he is fully recovered.  Of course, this is coming from Doctors which have not put the Lord in the equation. If the Lord wants a quicker recovery time, it's in his hands and that is the way it will be.  Once he does engraft, he will be on immunosuppressant drugs and possibly steroids which will prolong the recovery period.  One of the benefits of Cord Blood Transplants is less Graft vs. Host disease.  But the end result is a better prognosis. 

It looks like we are going to be on the cutting edge of medical science. This particular method of treatment is relatively new. There is one other woman that is a few weeks ahead of us undergoing a chord blood transplant at the same hospital. They are going to introduce us so we have a buddy to talk to.

Fundraiser: Bishop Mott would like to invite everyone including Seminary Students to a: Snow Cone and Cotton Candy Party, Saturday, April 17, 2010, from noon to 3:00 pm, at 751 N 520 E (Seventh St) in Tooele, Donations of $1.00 for Snow Cone or Cotton Candy. If health and weather permit, Brother Heder is going to come for a while and greet from a distance.

It's all good

We have had a wonderful week together as a family. This morning I came across this scripture in Alma 26:12. “Yea, I know that I am nothing; as to my strength I am weak; therefore I will not boast of myself, but I will boast of my God, for in his strength I can do all things; yea, behold, many mighty miracles we have wrought in this land, for which we will praise his name forever.” We also have had many miracles in our lives, and we are EXPECTING more.

Thanks to everyone for your fasting and prayers. Van is getting stronger physically and emotionally. He is going to be ready for whatever comes his way. We are in a holding pattern until we find out more with regard to our donor’s blood problems.

Olivia, our daughter, will be baptized in May. We were told by our Doctor’s that Van cannot baptize her (because of the germs in the water, etc.). So we asked Bishop Fivas if there might be a young man in our ward holding the Aaronic Priesthood, who might benefit from such an experience. He asked a Priest who happens to be our Home Teacher. He is so excited and has done everything in his power to be worthy to baptize Olivia. He is 17 years old. We had him over for dinner today to get to know him better and talk about the meaning of baptism. He practiced with Olivia until they both felt comfortable. We are so excited to have this opportunity in our lives.


Also, thanks for the many anonymous acts of service. Giving anonymously makes the recipient think highly of every one. Thanks is not enough, but if it is you, just know you have been a tremendous blessing to us.

Twist of fate

 

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.