Tuesday, November 10, 2009

Huntsman Center

What a day! Clark and I were both a little nervous for this meeting with the Bone Marrow Transplant team at the Huntsman Center. Yet another Institution Clark can add to his list. We know there is a 98% chance he will have to have the Bone Marrow Transplant - BMT, but we're riding on the other 2%. I was busy taking notes so I could pass the info on to all of you so if this isn't the most coherent, that's why. I have about five pages of hen scratching to sort through.

We were just getting onto the Belt Route when Clark's phone rang. We were nervous enough already but when Alaina said that Clark's liver enzymes were elevated which is a sign that the body is rejecting the liver we didn't know what to think. They want him to come in tomorrow and have a liver biopsy to see what's going on. So, as hard as it was, we put that in the BACK of our minds so we could absorb everything else we were about to talk about.
Walking through the Huntsman Center, we couldn't help but notice the many people with smooth, shiny skin atop their heads. The chemo and loosing hair has been one of Clark's biggest worries with the BMT. We also saw Kellen's grandma, Grandma Davis, who volunteers there pushing a treat cart. One of her friends has been waiting for a liver since about June and just died last week because she didn't get one in time.

Once in the office we met first with a social worker. Both hospitals have been very good about providing emotional support. She talked with Clark and asked him all about how he's doing and what needs he may have. She asked if this whole experience has affected him spiritually. Clark answered, "It has pretty much changed me 100%." As Bruce later said, "If this has helped his spiritually then it's all been worth it." She also asked what he is looking forward to when this is all over. He answered, "Going back to work, Christmas, and Alaska."

Even though it isn't for sure that Clark will have the transplant, they are typing us siblings because it takes about two weeks to run all the tests. There is a 25% chance that a full blood sibling is a match. Because gender doesn't matter, they drew two vials of blood from me while I was in there today. They will take the youngest and healthiest match which would make me the last choice but you never know. I know we would all gladly be the donor if it was needed.

Dr Boyer explained that the virus that attacked Clark's liver triggered and immune response that went crazy and attacked the marrow. This is a known but rare case. Dr. Boyer said he has never personally been involved in a BMT of someone who had a liver transplant, although it is in the literature. They are calling Clark's condition severe acute aplastic anemia. When looking at a chart of Clark's levels, they saw that he did have a response to meds awhile back but they have continued to drop since. This gave them hope that by increasing his dose, they may get another response. He said that Clark is on a weak dose compared to what they use. This may also be the cause of his elevated liver enzymes. The question is . . . how much time and effort do they put into giving the immunosuppression to do it's job as an alternative to transplant?

IF Clark needs the transplant, he would first undergo a harsh dose of chemo for 5-7 days. This will kill all the immune cells to create a clean slate for the healthy stem cells to rebuild. This news was somewhat relieving and Clark responded, "Ah I can be sick for a week." This is an extremely isolating time because of his low immune system. Ok, I'm not going to write this as if it's Clark anymore. Law of Attraction right! The recipient will receive the new stem cells through a line just like an infusion. So the hardest part is really the chemo and being isolated. Post transplant, the patient needs to stay within 45 minutes of the hospital for 100 days, including the 4-6 weeks in the hospital. More anti rejection meds are required but unlike the liver meds, these can be weened completely, usually one year post transplant. This creates a new immune system from the donor. Allergies are part of the immune cells and sometimes transferred. Thankfully there are little or none of those in our family. The immune system can go overboard and attack the recipient, even with a perfect match. This is called Graph vs. Host Virus - GVH. Usually it attacks the skin, live, and intestinal track. Because the liver is in danger with GVH, it makes Clark's case a little more tricky. The large amount of drugs the recipient receives need to be metabolized by the liver so they need to make sure Clark's liver would be up for the task. Dr. Boyer said, "This is about as complicated as it can get, if you can imagine that." Clark and I both chuckled a little and Clark said, "Ya! I can imagine that!"

For the donor: The donor will need to be in Utah for about two weeks during this time for clearance and the procedure. It is a surgical procedure where the donor is under general anesthesia. They are face down and about 20 draws of marrow are taken from the hip bone through the back. They stay in the hospital over night, have pain for about a week, maybe some anemia, and they're on their way. No long term effects.
Clark is the first person from South Dakota to put a pin in the map.

Overall, we left feeling better than when we went in. We thought we would have a date for a transplant when we left but instead we have hope that one won't be needed at all. Again, it would be a miracle but now it doesn't seem like a far stretch medically. I pray that Clark's immune system will respond to the meds and his marrow will start to function as it was designed. I know Heavenly Father has the power to do this. I'm thankful for the trial of faith I've had and know that this is only another testimony builder. Let's grow together. If we unite in prayer once again I know we will see a miracle.


kate larson said...

Clark has proved that miracles are possible. You definitely have earned and deserve an abundance of them. Clark, thank you for giving me a new look on life. Things that were important to me before are no longer important to me now. Life is to precious to take for granted!

Karla said...

I have faith in our heavenly father for clark. Clasrk is a great person and i know he has a purpose here on earth. I continue to pray everyday for u. So please surprise everyone again that miracles do happen.

Karla from Wyoming

Karla said...

Wow, I just knew once the Lord taught me to pray, he wasn't gonna let me off the hook. I'll get back down on my knees and do the best I can. 2% is do-able. I think we can altogether make another miracle. And HE already pretty much knows Clark's name ;-)

Glad for the updates.

Love and Good Thoughts,
Karla (Kate's Mom)

Janeanne said...

Hi Clark,
This Thanksgiving, there is much for which to be grateful. You have been afforded the opportunity of extended life which is only possible through the medical miracles of modern age. For if you had lived in another time and place, you may not been granted time to learn how much you are loved by others and by the Lord.

How wonderful it is that you have CHOSEN to use this gift to better your life. To put your trust in the Savior who is the source of peace and happiness. They say crisis brings out the best and the worst in people. Clearly, Clark this experience has brought out the best in you.

This weekend, I will be fasting and petitioning Heavenly Father to intervene on your behalf; that he will spare you further suffering and allow your bone marrow to function normally.

May this be an extra-special Thanksgiving. You have much - a family that loves you, friends that stand by you, access to the best medical doctors in the world, and a warm, comfortable place to lay your head each night. You are blessed.

No matter what happens, all will be well. So, be well. Love ya.

Anonymous said...

Stay strong Clark, you and your family are in my prayers. This journey of yours has really opened my eyes to all the day to day things that I think we all take for granted at times.

God's speed-

Bart said...

Clark there is so much to be thankful for today. I continue to pray that all is going well for you today and in the future. Have a great day and stay strong the days are full of great things one of which is you. Look forward to the day you are back in SD. Love ya Bart

Your Mother said...

Dearest Clark, my thankfulness to the Lord for your life that He saved, is my concentration today. I do have much to be thankful for but when I reflect this morning how different our holiday could have been, it brings tears of joy to my eyes knowing I can pick up the phone and hear your voice today. It was questionable many times if we would still have you with us. I wish you and Kristin's family were with us today. We are expecting 40 guests so the house is rather busy already. Loy, Jennifer and I made 29 dozen lefse on Tuesday night. I made 11 pies yesterday, 2 turkeys (45 lbs), a ham and all the trimmings will be the feast today. I know Illa and family will be feeding you guys well too. I will enjoy the warm tears that will stream from my eyes as I know you are alive and sharing the same joy your family has. You are always in our prayers. I love you all. Mom

Anonymous said...

It is Thanksgiving, I am thankful for your recovery. The Kansas family got together for the day and we discussed your blog..and how it has made kept us in the loop even though we are far away. There are many people praying for you out here in KS and wishing the you the best.
I also am thankful for the donor family who understood their loved one could still do great things as life slipped away. I am saying a special prayer for them as I know it must be hard during this holiday season. May they find peace in the miracles of your recovery and the other recipients.

Aunt Ann Printz

Janeanne said...

Hi Clark. Hope all is going well for you. Eric tells me you are doing better and enjoying football games, etc. That's great to hear.

Just wanted you to know I've been thinking about you and praying for your continued recovery. Hopefully a BMT won't be necessary.

We got our first snow in Bismarck last night. Bummer! That means the temps will stay low and winter has officially arrived. We sure enjoyed the extended fall, though. Today will be the first day I've found it necessary to wear a coat to work. Last year, by this time, we had two or three big snow storms. So, I'm grateful.

Make today a GREAT day! Take Care.