Good Lookin Bald Guys

Is it just me or does Elder Oaks have an uncanny resemblance with Billy Corgan of the Smashing Pumpkins?

Now, as far as I know neither of them has cancer. Their baldness is for other reasons, but I must say that they both sport it quite handsomely. 

Could Elder Oaks and Corgan have other things in common? I'm not sure, but I think Dallin would agree with the former Pumpkins front man when he said, "I didn't find Jesus. He's been there the whole time." 

And Corgan would probably agree with Oaks when he said, "There is not a right and a wrong answer to every question." 

 
And I think that both of them may have been trying to say the same thing when Billy hollered "Despite all my rage I am still just a rat in a cage!" and Oaks advised, "We cannot entirely prevent [adversities], but we can determine how we react to them." 

What does Mr. Clean have to do with all this? Nothing really, just another good looking bald guy.

Treatment Tug of War

Please excuse my brief hiatus from the blogosphere. I haven't been sure what to post because our situation keeps changing. Let me try to catch you up: Initial testing showed my leukemia (ALL) was due to hyperdiploidy of the 9th chromosome. We consulted with the doctors at LDS hospital and decided to join the Dana Farber research trial (an aggressive chemotherapy regiment that is patterned after pediatric methods). 

After over a month of chemo treatments new test results showed that I have a rare form of ALL known as "Mixed Lineage Leukemia". This coupled with the fact that I was testing positive for "Minimal Residual Disease" - that just means that the cancer isn't gone yet - led the doctors to recommend that we drop the Dana Farber trial and undergo a bone marrow transplant.

It was a difficult decision because I've been handling the chemo fairly well and transplants can be risky and have life long consequences. My wife spoke to a Leukemia expert in Chicago, and I got a second opinion from the doctors at the Huntsman Cancer Institute; everyone agreed that a transplant was the way to go. Reluctantly, we switched gears and prepared for a transplant. All of my siblings were tested and only one - my oldest brother Justin was a match. As Justin started making plans to fly to Utah (he lives in Florida) I completed my current round of chemo and waited for my blood counts to recover.

Weeks later we met with the doctors again. The good news was that my neutrophils had come back up, the bad news - well, the other news really - was that a second test showed up negative for MLL - this was disheartening because it was the main reason we had decided on a transplant in the first place. It would have been nice if we could have had a third test to show if the MLL was really present or not, but all of my bone marrow from that initial biopsy had been used up in the previous tests.

The doctors gave me an option to have an additional bone marrow biopsy to see if I still had minimal residual disease but it would not reveal any more data on the MLL diagnosis because the cancer was already in remission. Unfortunately this biopsy revealed that we have not yet been able to eliminate all of the cancer. At this point the doctors said it was a toss up; we could continue with the chemo and hope to defeat the cancer without a relapse, or we could proceed with the bone marrow transplant. We were faced with a decision we thought we had already made!

Choosing again to move forward with the transplant we checked into the hospital for what doctor Asch calls "knock your socks off chemo". After unpacking a weeks worth of accessories and waiting for about 6 hours we got the final curve ball. Further testing revealed that my brother would not be a good enough match, and we would need to hold off on the barefoot chemo (no need to stay at the hospital). We would now have to rely on the national registry to find a bone marrow match. We packed our things and headed home. 

And that's where I am now. The plan is to continue with regular chemotherapy treatments until I can find a donor. The good news is that there are over 5,000 potential matches. If you are interested in being a donor go to "bethematch.com" or click on the following link to sign up. Bone Marrow Registry

Music 4 Marshall

Marshall and Amanda Joyce want to thank everyone in their lives who made the benefit for Marshall a success!!! The food was great, the music marvelous, and the people that came the best! Our hearts are grateful and our financial burdens were made a little easier.

On 3/3/12 (Marshall's favorite number is 3), friends and family gathered to eat some great food and hear some wonderful music. And we know there were many there during the day before the show started that we want to thank as well! The real stars of the show were Cyndi and Tyrel- they worked so hard to organize everything. Special thanks to our Papa Tucci Mirsaid and his wonderful staff who also worked so hard.

What an amazing experience to be so closely involved in such a wonderful cause, and to realize how many generous and good people exist all around us. We love you all. We definitely will keep that wonderful feeling with us and it was much needed this last week as things got so rough. The roughest parts are still to come for Marshall, but he was on the stage doing what he loved for about an hour! When the night started he wasn't feeling wonderfully, but music is seriously his best medicine. As he sang and played I could literally see his color return and his demeanor change to happiness. All of our spirits were lifted and I hope yours were too.

It was fun to watch his brother and him perform together as well. They've always played so rad together and this event made me cry as I watched the brotherly love shine. There's nothing better at a time when a family member is going through something rough to know how much Marshall is cared for- not to mention it takes a little stress off of me as the caregiver.

As we like to say at our house now "air bones" for all who supported! It was so much fun we may have to do it again next year :)

Everything Eternal

It seems that Marshall may have eternally taken over this blog, but I wanted to make a little post. As difficult as life has been lately, it has also been amazing. Wonderful friends and family are what is getting us through this!

I had to give a shout out to my marvelous Hunt family who came down to Utah (since Marshall can't travel anywhere for awhile-okay a few years) to attend a temple session with my little bro Karl who is going to Japan like my dad to serve a full time mission.

The day was cold and my red heels kept sinking into the mud, but we grabbed a few pics.  There is my whole family- amazingly all together. I love them.

Here is our little family after shaving and donations this year. Soon we will have to cut Kez's hair.

When people ask how we are doing all I can say is taking one day and sometimes one minute at a time.  I am such the nerd of the family that I am researching and reading all I can about all I can.  I think I kinda pushed the doctors to run another bone marrow test since the initial one only showed 9 percent MLL.  The second test showed negative for any MLL.  As they would say in Brazil, ai, ai, ai.  This is going to be a tough decision between the bone marrow transplant and staying on the Dana Farber study.  Inspiration will be needed as doctors are not even sure what to recommend anymore.