Grateful Every Day 100%

As you may have heard my 100 day post transplant checkup went well! My cancer is still in 100% remission and my bone marrow is 100% donor. Wow that's a lot of hundreds! What does it mean?

It means that the chemotherapy and radiation that I underwent in preparation for my transplant did a good job of completely eradicating my bone marrow (and hopefully the cancer along with it). My donor's marrow has now engrafted and taken over the job of making blood cells, and it's doing pretty good too! My doctor advised that I am not expected to reach normal blood levels ever again, although they will improve over the next few months.

My MRI looked good - no traces of cancer or tumors in my brain. This is important because when chemotherapy was first being developed for leukemia patients they would reach remission but then die of brain tumors within about a year. 

You see there is a barrier between your cardiovascular system (your heart and blood vessels) and your central nervous system (your brain and spine). Although the cancer in the blood stream was being destroyed by injections of chemotherapy drugs it was still able to hide out in the brain. This is why I had to undergo so many lumbar punctures where they inserted chemo directly into my spinal fluid. I also had radiation shot directly at my brain as you may have read in previous posts. 

One interesting thing they discovered was that I have an "Arteriovenous Malformation" - meaning that the blood vessels in my brain are not formed in the usual pattern. This is not likely to cause any problems but is quite rare - not nearly as rare as my cancer - but yet another way that I am unique. I heard Einstein had it too... okay I made that up, but that would be cool right?

What else, what else... My lungs were just a tad weaker than they were prior to the transplant. This is expected, and is likely due to being confined to a bed and or a side effect from the radiation. My vision checked out just fine, and my chest x-ray and most my other tests appeared normal. My testosterone level was slightly low however, so for the next 6 weeks I get to juice up like a Major League Baseball player!

If you don't know that's Melky Cabrera. He got busted for using testosterone last month. Unfortunately I don't anticipate I'll be hitting any home runs soon - we're just going to try to get me back to normal - there go my dreams of getting Mark Mcgwire biceps... (sigh)

Honestly, I am just grateful to be alive everyday. Things look good right now, but that doesn't mean that I'm "out of the woods". In fact, I'll be in the woods for the rest of my life. The good news is I like nature :) Check out these gorgeous pictures from our family night "hike" this week.

I've had people tell me I'm brave or that they admire what I'm doing. I have to admit however that I don't feel like a "fighter" or anything like that. I didn't ask for this to happen, it just sort of happened. All I can do is take it one day at a time. I like what Jeffrey R. Holland said in conference a few years ago, "No misfortune is so bad that whining about it won't make it worse." I'll have to file that one away for Kezman when he's older ;) It's so true though, why worry or complain about things you can't change?

I heard somewhere (probably on facebook actually) that even when the "glass is half empty" it's really 100% full - just 1/2 air and 1/2 water - that's the way I like to see it!

Dear Caregiver

I just took a second trip to Idaho with my lovely little boy. Idaho is an escape from city and care giving for me, but the last few times it just has not been the same.  I love the laid back atmosphere and talking with friends and family, but too many aspects of the careful country girl's life and the city girl mom have become mixed.  I came home to pamphlets from Be The Match, the national bone marrow registry where we found Marshall's donor. If you would like to sign up to potentially save someone's life go here.  I actually took the time to sit down and read about caregivers for a while.  "Your experience as a caregiver can be just as intense as the person who received the transplant.  Your lifestyle, values, priorities and relationships may change too.  You need your own support and plans for how to cope.  It is natural to sometimes feel overwhelmed by responsibility, caring for your loved one and other family members, the house, finances, etc. It is not unusual for caregivers to ignore their own needs. If you become exhausted and overwhelmed, it can affect your ability to provide good care." (Living Now: Special issue for Caregivers)

Many things this year have worn down on me, mostly related to Marshall's sudden diagnosis, roller coaster of treatments, and chance of survival. After eight months of intensity it is past time to step back, smell some roses, and prioritize. I know it is normal for me to feel sadness, anger, grief, guilt, and loneliness. I know I have to find my own path to recovery as well. After being so focused on Marshall for so long and with him doing so much better for now, I feel like I have to find myself all over again. I know I am a much different person now. Some things I have attained more of include: humility, gratitude, an even bigger perspective on life, cancer biology knowledge, and strength.

I've put a lot of things I was pursuing on hold for the last eight months. I've got to keep progressing too, but looking back I realize if nothing else that my insides have progressed :)

I'm a Chimera!

In mythology a Chimera is a fire breathing lion with a goat head coming out of its back and a serpent for a tail. Unfortunately, in genetics a chimera is just a living organism with two different sets of DNA. Still kind of cool but I won't be able to breath fire, grow a tail or anything like that - shucks!

For those of you who don't know, it was a gamble to go through with the bone marrow transplant. The trouble was that my chemotherapy was not working as fast or effectively as the doctors had planned. That combined with the inconclusive data on whether I had "Mixed Lineage Leukemia" - a far worse chance of survival - was enough for me to take the risk.

What are the risks of a bone marrow transplant? 

They are often referred to as GVHD (Graft Versus Host Disease). In a nut shell, this means that the donor marrow doesn't recognize me and decides to attack. With a peripheral blood stem cell transplant (that's what I received) counts may recover faster but there is increased incidence of GVHD.

Graft versus host disease has two phases; acute, which occurs within 100 days of the transplant, and chronic, which is recognized after 100 days following the transplant. Acute GVHD can affect the GI tract, liver, and skin (we believe my stomach issues have been the result of this). Chronic GVHD can affect nearly every organ in the body! There is about a 50% chance I will be affected by chronic GVHD; to what extreme is indeterminable. It can also be manifest in endocrine abnormalities, infertility, memory loss, concentration issues, and secondary malignancies (tumors).

That is the reality of what I am facing. So what's the good news? For one thing, I'm alive! I thank God every day for this. It is truly a blessing and a miracle. It really makes you think about what's important, and cherish every moment. I wrote this song while I was in the hospital in June. I was in one of those "meaning of life" moods. Just click on "The Story" if you want to listen.

Since we reviewed all the scary GVHD stuff I think it's only fair to mention some of the positive benefits from the transplant. For example, I won't have to pump anymore toxic chemotherapy drugs through my body; whereas my initial treatment protocol required years of chemo. Another plus is that the donor cells are prone to fight off any residual cancer that may be hiding out (or if it ever tries to come back).

Speaking of that, my 100 day check up is coming up on Sept 14th. Technically it will have been 105 days since my transplant but who's counting right? This is when they will test the ratio of my chimerism (how much of my bone marrow is me and how much is the donor) as well as if the cancer is still in remission. Keep your fingers crossed (where did that phrase come from anyway) and we will plan for a good graft and continued remission!

I can eat again!

At first I didn't even notice it was happening; once I returned home from the hospital I slowly continued to lose my appetite. Within a few weeks I was hardly eating at all and I had lost more than 20 pounds. My amazing wife was more than a good care taker, she went above and beyond just to get me to snack. I was pretty much bed ridden due to weakness, and at the time I didn't realize how scary that was for her.

The good news is that my brother Tyrel got married. Weak and sick, I still couldn't miss that. The Doctors were ready to admit me to the hospital on Monday, but I begged them to let me go to my brother's nuptials the next day. They obliged, but not without giving me a high dose shot of steroids - which over the past week has been the solution to my appetite loss.

It is good news that the steroids are helping, but we are actually going to work to taper me off of them as soon as possible because they can cause a whole number of undesirable side effects; bone degeneration, muscle degeneration, chubby cheeks and tummy. We are taking all necessary precautions to prevent what we can.

Needless to say it is a bitter sweet victory for my bowels. I am happy to announce that I am starting to gain back some of the weight I lost. 

It is good to be home, Kezman is a joy! He makes me laugh till I cry. Thanks to everyone for your love and support. I am still having good days and bad days but I am gaining my strength (and my hair) back.

In fact my hair is doing some funny things. Up top it's growing in quite dark, but it is soft like a baby chick. Last week I shaved a black mustache and this week it grew in blond... I'm afraid to shave it now because it might come in gray or something and I'm not ready for that!

Let Freedom Ring!

Marshall is free from the hospital. Free to be with his family. Free to celebrate the fourth of July. Most of all free from cancer for now. Hopefully for a long, long, time. Your wife and your son need you!

Momma and Kez on 4th of July

His mother and I have been discussing how he really skipped over the gruesome days of his transplant. I have come to the realization (again) that that is just who Marshall is. The good always outweighs the bad for him. A second shot at life and time to figure out what really matters seem to be all he needs to forget the terrible days of never stopping to go to the bathroom, sleeping for hours (or trying to sleep for hours) in hopes to escape the pain, spitting in a cup to be rid of the seeming eternal mucous coming from his mouth, throat, and not being able to eat or drink for many days. Truthfully it was really hard to watch so I'm sure it was a million times harder to handle for him and he'd prefer to have it blocked out of his memory forever so I shouldn't bring it up I suppose.
We are glad to have him home though he is still weak, tired, and nauseous. Doctors are very impressed with him up to this point and even the hospital administrator stopped us in the hospital hall to tell Marshall what a good attitude he has. He agreed when I told him that I call Marshall "my Ballistic Optimistic". Words don't do enough to express how grateful I am for his greatness and goodness.  He was even featured in a news clip
Click here if you'd like to watch it.
Our lives are not perfect or free from worry yet. He still has very frequent check ups, has to be very careful to drink a lot, eat enough (with his nausea and pill intake this is very difficult), and avoid any illness while he is on immunosuppresants. We have been so fortunate and blessed from loving family and friends, and hope that the ride will be better from here on out even dealing with all the effects and bumps that are to come.

Sweet cousin Maddie playing with Kezzy in the pool

Tyrel's red, blue, and white drink is a success!

HAPPY FREEDOM to all who are oppressed in any way. We have come to know many people who have similar situations and relate to oppression in diverse forms. Marshall has been a beacon to our little family and hopefully a continuous shining light to many others in their hardships and even in the good times. Not one good moment will be taken for granted by this gal :)

Remission

What a month! Let me first fill you in on my medical treatment, after 6 days of irradiation I had two days of Cytoxin infusions (Cytoxin is a standard chemotherapy drug). The next two days  I received ATG infusions - ATG stands for Anti-Thymocyte Globulin - which if you're like me doesn't tell ya very much. 

One of my nurses taped this picture on my door as a joke.

Here's what you need to know, ATG is an antibody that rabbits produce to fight infection. For my treatment they take the rabbits blood, filter out the ATG and give it to me by infusion. Luckily the side effects have been minimal, I don't mind the loppy ears so much, but the white whiskers that sprouted out under my nose are a little distracting. 

After letting the rabbit globulins flow through my blood stream and destroy my T-cells it was time for my transplant. At this point the radiation, Cytoxin, and ATG had wiped out my bone marrow and immune system completely.

On June 1st I received 10 million donor cells. I was pretty drowsy through the infusion because they pre-medicated me with Adavan (for nausea), Benadryl, and Tylenol to prevent an allergic reaction. Truth be told the transplant itself wasn't very exciting, but the little dance show my wife, mother, sister, and soon to be sister-in-law put on that morning was quite entertaining. They even wore orange - the Leukemia Ribbon color. For several days after the transplant I had to receive blood and or platelet transfusions because the donor cells take time to engraft so my blood counts remained very low. At this time I developed sores in my mouth and throat that made it difficult to eat.

Green means Go!

Mouth sores are nothing new to me, but the overwhelming nausea that has accompanied the transplant has been quite a battle. For a while they put me on a pain pump. This way I could push a nifty button when my pain started rising and I wouldn't have to call my nurse. If the light is green you may give it a pump. This was most helpful at night when my throat became dry and the sores were most painful. Although it has been rough, I have been uplifted through this experience. The genuine love and care shown by so many, even the old missionary who came in with his name tag upside-down and quoted scripture to me.

It has all added to a spirit of love and peace that I have felt everyday through this process. It has caused me to contemplate the word, "Remission". My cancer is in complete remission! Wow it feels good to say that out loud. To know that this terrible malady has been removed. 

It leads one to question what spiritual maladies they may be laden with? How good would it feel to say that they were in complete remission? How wonderful to know that they can be! And you don't have to take any toxic drugs or inject yourself with rabbit anti-bodies either. It just takes a seed of faith in the savior, and sincere repentance. The side effects I may add are also more favorable as they often include, loss of feelings of guilt, higher sense of self worth, increased confidence and righteousness - who doesn't want that!

With the way things are progressing I should be heading home in the next few days. It is still a long way to complete recovery but we can only hope things continue to move forward as they have. Thank you all for your love and prayers.

Transplant Time

Marshall has been super sick. I mean so sick that he doesn't have the energy to get on a computer.  He received the new bone marrow cells on Friday, June 1st. I can't even explain the range of emotions that overwhelmed us on his special second birthday. We received the good news that his donor, who will remain anonymous from us for at least another year, produced 24 million cells. That is a lot! In one bone marrow transplant the receiver can only have 10 million cells transplanted. There is plenty more bone marrow to work with from the primary source if needed in the future.

The American Red Cross box arrived and we were ecstatic! Although bone marrow transplants can be a surgery by drilling into the marrow it was not in this case.  In his case they were peripheral bone marrow cells so they went through his central line (this is the line that was surgically directed to a main valve by his heart when he was first diagnosed).

 The procedure isn't very interesting for some (it is for me- maybe because I studied about it way too much), but what happens before and after is really rough! If you would like to know more, my mother-in-law found a good link here: http://www.cancer.gov/cancertopics/understandingcancer/StemCells/AllPages

Marshall may be small, but he is tough. I coerced Mom Lucile and Melanie to do a little dance to cheer him up while Tori did the sign language for "Feelin' Good" by Michael Buble (one of Marshall's favorite artists).
 Orange is the Leukemia ribbon color :).

Here are a few photos from transplant day. I would like to be able to one day show these to Marshall's donor so he knows what hope his selfless sacrifice gave to our little family.

That same day Kelly moved out (oh how we already miss her little munchkins' air fives, air hugs, and entertainment), Tori moved in and Kez got his first hair cut. The hair cut was an accident- Elizabeth did not know and called me saying, AH was this his first!? Yep I said, but at least he didn't fall down and cut his lip open or something.  Here are some pictures before and after his hair cut. You know how people always make the before shots really bad? Like with weight loss programs or makeovers, etc.? That's what I did here. The first one he's looking away and has a little scratch on his head. Just using a little advertising trick to make the after look better :).

Tons of emotions and physical challenges occurring right now, but I would have to say I have had such a care free life up until now. Trials can be blessings and we have had so many of both that we are completely overwhelmed. Those who have stepped forward for us right now even when their lives aren't going perfectly as planned have been such an amazing strength. Thank you friends, family, and selfless people. We are humbled.

Marshall's new bone marrow will take at the very least 2 weeks to engraft. Maybe 4. Maybe 8. Until then he gets blood and platelet transfusions regularly. More gifts from selfless, anonymous, wonderful people. Then more complications with graft vs. host disease. Hopefully they are small and the leukemia does not come back for the next five years. Much love and gratitude from us to you for caring and sharing our journey with us! Hopefully Marshall feels well enough to post again soon since he's the real teller of his very real experience.