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.

 
 

Why not?

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.

Lord, Give Me Experience

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"!