Touch and go

Thanks for all your posts on our blog.  I don’t know how to adequately thank you all for you words of encouragement and support.  But just know that each time you post, it automatically comes to my e-mail and I wait until Van wakes up a little bit and I read them to him. 

Yesterday was the hardest day we have had so far.  He was spitting up bright red liquid blood so much that we couldn’t keep an oxygen mask on him so his oxygen level would drop into the 60’s within minutes.  They had him on a c-pap machine with 50% oxygen but he had to take it off when he started coughing so much.  By the afternoon his blood pressure went to 180/100, on as much oxygen as possible, and his heart rate was 145.

They made the decision to incubate him and put him on a venelator to breath for him.  So at 8:30 last night they put it in, along with a feeding tube, a pump to pump out the blood from his lungs, a catheter, and probably a lot more that I don’t know about (because they had me leave the room).  When I got back they put in a sensor of some kind in his arm to automatically check his blood pressure and oxygen level after the blood leaves the heart.  So it is very accurate at all times.  The other arm they put an I.V. because he is getting so many medications at one time they needed a fourth line.

People are worrying about me, but the Lord provided me with a friend (whose husband lost the fight to cancer last January) and my sister who were there for me in the darkest times of the day yesterday.  Van’s sister in Iowa called right at the time when I was taking a walk and trying to calm down from the news and she called his entire family and by 11:00 they were all there with me so I wasn’t alone. 

In the afternoon, the Branch President came to visit us and told us that Van’s name was being put on the Prophet’s personal prayer list (I think it’s because he is in the Stake Presidency) and he was aware of him.  He also told me that when Van needed a blessing he should put his hand on my head and assist in giving me one.  We all went into his room so his brothers could give him a blessing.    Afterwards for my blessing, I put my head on the bed next to Van’s hand and placed it on top of my head (because it is tied down to the bed with an elastic that moves just a little) while his brothers gave me a blessing, with him assisting in that blessing.  There wasn’t a dry eye in the room.  It was so wonderful to feel the priesthood working.

This morning he received an ECO and his heart is at 25% instead of 55%.  They think it could have been from the chemo but not sure.  His kidneys are a little worse today.  And he just got a liver ultra sound and an EKG.  We signed up to be a part of a study to prevent CMV which is a very bad lung virus that accompanies pneumonia.  The Doctor said it was too late for the study because he already has it.  So our doctor called the FDC and got permission to use this drug experimentally.  It doesn’t even have a name yet it’s called CMX001.  But it has been proven a few times to cure.  We start that today and it will be twice a week.  They have to take blood draws every hour to two hours for a few days.

I told you a lot of information but please don’t feel bad because this is so much better than the last four days.  He is finally resting (so that means I can rest). 

ICU

I’ve been told that when some of you read the blog, it makes you cry. If you are one of those people you might want to skip this next paragraph.

For the last few days, Van has had a hard time breathing. When he breathes it is VERY labored and he has been on 50% oxygen. That is only one of the many reasons he was taken to ICU today. During the night and this morning, Van has been coughing up blood because his lungs are bleeding (pulmonary hemorrhaging). They have raised his platelet parameter from 20 to 100. They took the blood thinner medicine away. He has pneumonia which gets worse every day. The central line infection was staff. They have already tried two different anti-biodics to try and get rid of it. He has blood in his urine, his kidneys are having a hard time functioning, his liver is struggling. He is jaundice especially in his eyes – they are yellow with a coating over them. I know there is more but I don’t want to worry you any more.

They plan on treating him aggressively and will meet in rounds tomorrow to determine more things they can do for him. Nobody knows how long we will be here. But we know we are in good hands and are glad there is a place where they can take care of us so well. For the past five months, I always told myself when things got rough – “We’ll at least it isn’t as bad to go to ICU”. Now I’m not sure what to say. Except Van’s brother knows a man who’s daughter had leukemia and was in and out of ICU a half of a dozen times. It has now been 9 months and she is doing well. So we only have good things to hope for.

In Alma 32: 21 “And now as I said concerning faith—faith is not to have a perfect knowledge of things; therefore if ye have faith ye hope for things which are not seen, which are true.” This is our new motto for the day.

I expected to have a lot of rules in ICU but the main ones are no children under 14 and only two visitors at one time. I am able to be with him during the day. But at night they want him to sleep plus they don’t have room for me to sleep in the ICU. But they are letting me sleep in his other room on the 8th floor at night. They said they will hold our room for us, so please don’t worry about our BYU room or shrine as some people call it. It will still be there for us when he get’s well enough to go back.

He will hold you up

I had to be gone today with work so Van’s sister came to stay with him. When I returned my fabulous sister and brother-in-law brought the most wonderful surprise! Jenny Phillips (LDS singer song writer), her husband and members of her backup choir. After giving Van a blessing, they sang songs from her CD “Remember the Journey”. I know it was written about the pioneers but every song applied to us! They sang to us in our room and then went out into the hall and sang two songs to all the people that couldn’t come out of their rooms. It was so touching because the caregivers held open the door to their rooms so their family members could hear. We all were in tears, by the spirit that spoke to our hearts.

One of the songs they sang to us was “He will hold you up”.   Here are the words.

Do you feel like you stand alone
Sometimes?
Do you wonder if you have the strength
Sometimes?

Just hold on
Keep holding on to the rod

Don’t give up heart
Don’t give up hope
He will sustain those
Who walk His road

Just put one step
In front of the other
And it will be enough
He will hold you up

He can feel the things inside your heart
Right now
And He’s praying you will trust His way
Even now

Just hold on
Keep holding on to the rod.

This is EXACTLY what we needed to hear tonight because Van now has three central line infections. He has a mild case of pneumonia. He is VERY VERY WEAK.  The nurse has asked that we don’t have any visitors at this time. He doesn’t have an immune system and is struggling to get rid of the infections. They don’t want to risk bringing any possible germs into the room. I’m sorry but please call. He can’t talk right now but I can put the phone up to his ear to hear your voice. We love you and thank you for your faith and prayers. He will hold us up, that we know.

Bald is beautiful!

We are trying to find the small improvements or the positive things that happen throughout the day. Sometimes it is that somebody came to visit and other times it might be that we moved his bed around the room so the positive air that is flowing freely won’t hit him in the face and dry out his nose and throat.

I have to tell you about another positive moment for me and maybe not so much for Van. One morning I looked on his pillow and saw some hair strands so I pinched his ¼ inch hair (the re-growth from last chemo) and it pulled right out of his head. I got so excited (you have to or you would go crazy) that I tried a new technique. Instead of using duck tape to pull out the hair, I heard you could use a lint roller.

Before, During & After Pictures

So I rolled the roller over his head ten times but he still had a few of those gray hairs that wouldn’t let go so I shaved his head. It’s better that then getting hair all over your pillow. Then I got an idea and said, “I wonder if your eyebrows will come out?” Sure enough when I rolled the lint roller over them many eyebrows came out. He made me stop because he said he wanted some hair left. They will just come out slowly. That was an exciting day.

Van is hanging on and believing in the words of Alma where he said, “Now, this restoration shall come to all, both old and young, both bond and free, both male and female, both the wicked and the righteous; and even there shall not so much as a hair of their heads be lost; but every thing shall be restored to its perfect frame …” (Alma 11: 44)

Life is pretty sad right now. The Doctor’s are hoping that this will be his lowest low. He’s super weak, throws up a lot, fevers ever night, we think he has sleep apnea but will have to wait on that until later, is on lots of oxygen, can’t eat, can’t sleep very well, and has a central line infection, etc. They said by day 25 we should start to see improvement. We are on day 9 today.

He’s had two blessings in the last week and we have felt the spirit really strong. In fact, one night I prayed really hard to know what to do for my husband and within an hour the nurse and I (with the spirits help) figured out three things we could do for him which helped a lot and he was finally able to rest.

The Prophet

These past few days have been difficult and I was having a hard time wanting to write about it so I’m sorry it has been a while since the last blog. They say the first two weeks after a transplant are the hardest. He’s had lots of ups and downs (actually just downs) including fluid on his lungs, hooked up to a lot of oxygen, possible central line infection and kidney infections, bags of platelets and many tests, etc. Last night was a little intense; I set the alarm clock every hour so I could wake up and wipe a wet sponge in Van’s mouth. He takes “dry mouth” to a whole new level. We make small attainable goals each day and today he was able to shower by himself, take a walk and sit in a chair for an hour. Amazing! He is on the road to recovery!


On the more positive note, Saturday, Bishop Mott took his youth to the Salt Lake Temple to do baptisms for the dead and guess who they saw? President Thomas S. Monson! The Prophet spent 30 minutes talking to them. He told them to “Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths.” (Proverbs 3:5-6) He shared many stories, experiences and scriptures that strengthened their testimonies.

Many of the youth came by our hospital room afterwards and administered to us. They each shared something they learned from the Prophet. It was very enlightening. Sister Mott made this “Go Cougars” sign for us. Did you know it is only 108 days until the first BYU football game? We are so excited to change the count down each day.

Sunday night was a very trying time for Van and so his brothers brought their sons and they all sang to him in harmony. Van couldn’t speak much that day but he told me later that angels were singing with them and they had come to “bare him up”. The lady across the hall from us had her second mini transplant two weeks ago and had complications. Her body was trying to pass away Sunday but as soon as the boys started singing (with the angels) that evening, she died within minutes. The nurse said she remembers hearing the songs, “I Need Thee Every Hour and I Believe In Christ” as she walked down the hall and finding out the news. It was so touching to be a part of such a heavenly event.

We love you all so much and thank you for your prayers and fasting. We couldn’t do this without all of you joining your faith with ours.

Day Zero

We have been anxiously waiting this day for five months. Van found out he had leukemia and needed a bone marrow transplant December 30, 2009. We thought it would only be 1-2 months to get a bone marrow transplant but the Lord had other plans. We slowly found out there weren’t any siblings that matched Van. Then the National Bone Marrow Donor Registry had 12,000,000 people registered and Van had only three possibilities. They found one of those three to be a perfect match. That person went through a lot of testing but he had very low platelets and so they disqualified him. One of the others were disqualified and the last one still available was only a 9/10 match. If they gave him this bone marrow, Van would have a lot of graft verses host disease. So they felt they should try Cord blood which should give him less graft verses host disease.

Bishop & Cheri Fivas brought Van a birthday gift today.  It was an Iron Man mask.  The card said, To our "Iron Man", First time mortality, second time baptismal font, 3rd time today!  Not to many get to be born "3 times"!  Hope it is the best one yet.  Everyone knows that third times a charm!"

They found just a few matches of umbilical chord blood but today he received a 6/6 match with lots of stem cells at 3:00 pm and then a 5/6 match with stem cells at 6:30 pm. Research studies say that one batch of cord blood will eventually conquer and take over, elimiating the other. The nurse said, within minutes these stem cells know where to go – right to the bone marrow and hang out. Then there is a waiting game while they decide what they want to be. Some people engraft in between 17 and 50 days.

We are the third cord blood transplant for this hospital. The first person didn’t make it. The second person is only three weeks ahead of us and engrafted in only 17 days! We are very hopeful. Van is trying to beat the record.

One of the nurses that assisted with the transplant was reading his scriptures last night and came across one full of meaning just for us. 2 Nephi 2:2 “… and He shall consecrate thine afflictions for thy gain.” Where else on earth could we be surrounded by loving, compassionate, religious people who love us? Well, I know one place is here at LDS Hospital.

Van speaking: I thought how tremendously symbolic this process is to the atonement of Jesus Christ. In Mosiah 3:19, “We must put off the natural man and become a saint through the atonement of Christ the Lord.” The process of this transplant kills off the natural body and then a vicarious act involving pure blood is brought in to restore and bring forth a newness of life. It is like the sanctifying blood of the Savior. It is what heals us and changes us into a new person. In order for me to survive, I have to embrace that new blood completely. Just like I must embrace fully and unequivocally-- the sanctifying and atoning blood of Jesus Christ -- in order to live spiritually. To purge from me the sin and death that would kill me spiritually. If my body rejects this blood, then I will die physically. But if I reject the atoning blood of the Savior, I die spiritually.

It’s natural for your body to try and reject this new blood. The natural man doesn’t want to die and change and so in the process it is painful and long. This to me is very descriptive of the spiritual journey. The sanctification change is difficult and painful. There is a saying, “To grow is to change and to become sanctified or perfect, one must be changed many times.”  We must embrace the pain and struggle that comes with change.  We have to kill the natural man and come forth in a newness of life.  To the extent that my body accepts the new blood, my future quality of life will be determined.  For example, metaphorically speaking, I'm looking at death, Telestial, Terrestrial or Celestial quality of life based on how well my body engraphs. The more complete the engraphment the more perfect the life.  Last of all, we all need to ask ourselves this question; at what level is my personal conversion (engraphment)?  What quality of life am I willing to receive?
 

We sang Happy Birthday to him because today will be his

new birthday.  Today is day 0.  Blue icing for him

and the flower for me because it is "our" birthday - we are

in this together!

The Escape

Today Van talks funny and he has the hiccups a lot. It just makes you laugh. His tongue and lips are thickened with Kepivance so it interferes with his speech. He all of the sudden breaks out in loud hiccups, which they say is from the Chemo and Radiation.

Last night they had to put another I.V. in his arm to be able to accommodate all the extra medicines they needed to put through him. It took two hours and three nurses to finally put the I.V. in place. I thought he had a lot of I.V. medications yesterday but now there are even more. He has five pumps and an I.V. in one arm. Some pumps are pumping two medications each. His I.V. in his arm started turning red, puffy and really hurting him. So they took it out and re-poked the other arm to finish all the medicines.

Today Van asked the Doctors why he is feeling so bad and they said we have killed off all of you’re ability to heal. The neutrophils in your body, that are in charge of healing- are dead. You have all this dead tissue that can’t heal including in your gastrointestinal system where you eat. So he is going to be sick all the time until the new stems cells take root and start producing good cells of their own in a quantity high enough to start healing his body which could be months.

He is super tired, nauseous most of the time but today he was able to eat so they took him off TPN (I.V. nutrition). It’s funny how we are so happy for the little things. Every once in a while we have a good moment and we cherish those moments.

Van was so miserable and sick this past week and thinking what a relief death would bring.  He started to pray that the Lord would relieve his suffering.   A scripture came to his mind D&C 45:26 "And in that day shall be heard of wars and rumors of wars, and the whole earth shall be in commotion, and men’s hearts shall fail them, and they shall say that Christ delayeth his coming until the end of the earth." 

Van speaking:  It was then that the impression hit me that I'm going to have to see this through.  The Lord will test me to the end.  Even beyond what I think my capacities may be.  My thoughts are that suffering allows us to obtain a level of understanding of the Saviors Atonement that is unique and special.   It also sanctifies us and that is not an easy process.  It cannot be and will never be easy.

Van was trying to escape from the hospital today.  No just kidding.  The Doctor gave him permission to go outside for the last time - in a long time.

Pushing Through

Chemo started yesterday and will continue today and tomorrow. I have a picture of the first bag going in which says “Caution” and it has to be handled by a nurse that has been “Chemo Certified”. Ben, our nurse, is so funny. He has to wear thick purple chemo gloves to protect himself, he wears a protective smurf outfit and lays out a blue protective cloth on Van while he hooks him up to the Chemo. Then everything is packed back inside the Chemo Caution bag and thrown away in a special place.

I also took a picture of the bags of fluid going into him now. They include TPN – Total Parenteral Nutrition is full of lots of good things including vitamins when he can’t take any food in the normal way. ACYCLOVIR– Anti-viral medicine to prevent certain viruses. CYCLOSPORINE (SYE kloe spor een) is used to decrease the immune system's response to a transplanted organ. It’s to help him tolerate the incoming stem cells so he won’t fight them. MESNA (MES na) is used to prevent bleeding from the bladder during Chemo treatment. All this has to be accompanied by fluids with Lasix or FUROSEMIDE (fyoor OH se mide) which is a diuretic. It flushes you out so the Chemo won’t stay in your bladder very long.  These are just a few things that were put in him today.  There were a lot more.

I asked Van how he is doing and he says “horrible”. That just about sums it up for the past few days. He has to force himself to walk in the halls two times a day, he has to try and eat something each day, and take a shower each day. Overall ,he is just pushing through.

We were introduced to Jean who just had a stem cell transplant and is three weeks ahead of us. She said the first two weeks are the worse. I’m keeping him positive. Today we listened to the BeeGees, and watched parts of a movie (until he fell asleep) and listened to our children tell us about their day (that is the best part). I work out on the recumbent bike every day and have been using the stairs (8 flights up and down) to go to the mail room, cafeteria, etc. I’m really enjoying the exercise and I sleep better at night.

My favorite part of the day is when Van wakes up for a few minutes and tells me he’s been thinking of someone and needs to call them. I love to see the spirit work in his life. I think that is how you can tell what kind of a person someone is, when they are in pain or a having a difficult experience, they still think of others.

Celebration Bell

Today was a huge mile stone for us. Van finished his four days of full-body radiation with eight doses. After he finished that last radiation they take you over to the celebrate bell and ring it as loud and as much as you want while everyone claps. It’s a beautiful feeling knowing that part is over. He is pretty much constantly medicated and at least once a day takes a special nauseous medicine that will put him to sleep for six hours. But it really is a good thing.

Every time he wakes up to go to the bathroom, I know I have five to ten minutes to talk with him before he goes to sleep again. I love being with him so much. I just have to talk fast and make sure he gets whatever he needs. Sometimes those 5-10 minutes is spent holding his head and rubbing his back while his body continually heaves. I just sing the hymns until it subsides. I think this will be our routine for six more days while he gets chemo and the bad three days after.

I went to visit a neighbor across the hall from us and after hearing her story, we are REALLY thankful for our problems. Her problems and complications have been much worse than ours. She wasn’t even well enough to have a full bone marrow transplant so she had a mini transplant and it didn’t take so she just had another mini-transplant. The first time she was in ICU for weeks and almost died. We are feeling really grateful. It doesn’t matter how bad you think you have it, there is always someone worse off than yourself.

I was able to go to church today at the LDS branch of the Hospital. They have a thirty minute Sacrament Meeting and a thirty minute Relief Society/Priesthood. There are around fifteen couples in the branch. And today, I was the only person that came to church from the hospital. It was a beautiful Mother’s Day. We learned about the prophets and some of the special stories about their mothers.

I told Van that I would stay with him for the first ten days before I start going home twice a week to see the kids. I love being a Mother and all I can think about is what I can do for my kids while I’m gone. I’ve come up with a great idea of writing a special note to each child and sending one in the mail every day. Each note comes with something fun they can do to pass the time away until we are together again.  (Keep this a secret - our kids don't normally read the blog unless I'm there).

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?