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.