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.

How I Nearly Became Spiderman

It was difficult to sleep on Monday night. The impending hospital stay began weighing on my mind as I packed my bags and decided which books I'd like to accompany me on this stretch of the journey.  Sleep deprived and anxious, I drove to the hospital on Tuesday morning.

East 8 welcomed me with warm smiles and open blood pressure cuffs. I was scheduled for my first round of TBI (Total Body Irradiation) at 9:30 am. I spent some time unpacking my bags and organizing my room. Its a pretty spacious room with a great view of the eastern foothills. The morning sun welcomes me with a bright cheery atmosphere. I much prefer its natural radiance to the synthetic glow of hospital lighting. 

When the tech from radiation came for me it was time to put my nifty mask and breast plates to the test. It's quite a treck down to the north end of the first floor so they bring a wheel chair for me. I haven't used it much so far (just Friday when I had an extreme spell of nausea). I figure as long as I have the strength to walk around I could use the exercise. 

In the radiation room I step onto an elevated platform while they secure my bracings, and hang thick medal plates specifically shaped to cover my lungs during the treatment. As they got me all situated and strapped into place they took a couple preliminary x-rays to confirm with the doctor that everything was set up correctly. 

It was about this time that I noticed a big furry spider come crawling out of the air vent not more than about 2 feet in front of my face (for the first round of radiation I am facing backward - you can see the vent in the ceiling just behind me). To make matters worse I was told to remove my shirt for the procedure and felt quite exposed to my spotted litte friend. When the tech came in and let me know that we were about to start I told her, "That's fine but I'm not holding still if this spider crawls on my face."  She came back with a hospital chart or something and swatted him against the wall. The hairy creature wasn't quite finished though and made an acrobatic decent, plummeting downword on a thin silky cable. She swatted again and that was the end of the him. 

At first I was relieved, and verbally justified the murder of the likely harmless arachnid by saying something like, "If you think about it, we did him a favor and put him out of his misery. He was about to get nuked by radiation." We had a good chuckle about that. But then I realized my blunder. What if we hadn't killed the spider? It's likely he would have acquired mutant abilities from the radiation - thereupon biting me and transferring his mutant powers. I could have been the next Spiderman! A once in a lifetime opportunity lost to the irrational fear of a helpless invertebrate.

The first day of radiation was pretty long because of the many x-rays that were taken. However, after the initial visit, we settled into a pretty good routine: 10 minutes of TBI to my back, take a break from standing and lay down to administer the CNS (Central Nervous System) radiation, and then 10 more minutes of TBI to my front side. 

CNS irradiation is administered with lazer precision to my brain. They told me that I may see blue lights and smell something similar to bleach. This is not due to any of the functions of the machinery, but rather how one's brain reacts to pulses of radiation. I have both seen the blue lights and smelled the strage metallic smell - neither of which actually exist - yep I was trippin. 

The good news is that today is day 6 of my radiation treatments. I'm done! And for all I had to go  through I got to ring the bell of celebration! 

 

More adventures to come, but for now I am going to "Celebrate Good Times Come On..."

Is THIS week really here?

This week is the week. The week Marshall starts full body irradiation therapy daily before his transplant. The week that starts the chain of events leading to a new immune system, a second birthday for him, and the potential for acute or chronic graft vs. host disease. Also in it holds the potential for living instead of dying.

I feel like no one should have to face the number of life verse death decisions we have had to so far and no one should have to face the serious number of "turn-of-event" situations that we have accrued. But underneath it all I also know that we can handle so much more than we ever could have without this experience. That the Lord has guided us through and taught us (especially me) every step of the way.

No matter what the outcome, we are stronger, we are better equipped to handle the "hard stuff" of life. So I am thankful for all the tears that have been shed and will be shed, the prayers that have been given and will be given, for the service rendered for our family and those who have served our family and will continuously serve, and those who have given and will give to the cause.

I admit I didn't want the transplant all along. It's the harsher of the choice we had. I am putting full trust in the Lord. I know people who have been praying for our medical staff and a very strong blessing that Marshall received before this all began that the medical professionals would be inspired. We heard many times that they had a 'hunch' or a 'I don't know why because you are following the protocol and I shouldn't pull you off, but I feel like you should do a transplant'. I am putting my complete faith in Him and He knows what to do. What an opportunity for growth and living outside our comfort zone that we have been given. Happy last Sunday home for awhile to Marshall! I will miss him while I go to church with Kezman without him!

My sweet baby boy started walking the night before my birthday. Coolest birthday present ever, but it also makes church hard because he doesn't want to sit in my lap- he's too independent.
We have had tried to have a lot of fun this past month knowing that the time would come that the majority of our time together will be stuck in a small hospital room and wing (Marshall's not even allowed to leave the east wing for the west wing on the 8th floor) while trying to keep his distance from people as well. We will soon be hermits so humor me while I hit the replay button on a few other memorable moments this past month.

We celebrated my 27th birthday by going to a sweet Jazz game that got them into the play-offs (great for how young they are).  Marshall and I are pretty good for such a young team too :). (Except we better WIN at playoffs!) He actually was growing back a good amount of hair by then, but he wanted to shave it into a "J". When he said he was going to shave it off before church the next day I innocently asked why. I thought he was doing it to stand for Jensen. I didn't even make the connection to Jazz until Corey outlined it in Jazz colors. Then our great friend Cyndi stopped by and said, "Just keep it on-- tomorrow it can stand for Jesus!" Love her- she brings a lot of laughter to life. We went to the game with Tori and a guy and our friends who in their true Corey-and-Brett fashion snuck in celery and a whole jar of peanut butter. BAHA! Celery dipped in pb never tasted soooo goooood! I lost my voice from screaming- gr8 game!

My youngest brother Karl is going on a mission to Kobe, Japan! My family stopped by when they dropped him off at the MTC. I sooo wish they lived closer on the hard days. So, one of my dreams came true to watch all three little brothers serve. When I went on a mission years ago I hoped they would follow in my footsteps.  I know it is not because of me they chose to go- they each have had their own conversion experiences, but I'm so glad they all made it!!

The last few days it has been great to see a good friend from my freshman year of college, Goelz and his beautiful family and my wonderful room mates from the Riviera days.

Goelz' son is such a good big brother!

And smores with the nieces and nephews! They watched the show Sandlot so we ate them in the order Marshall said. First you take the grahm. You put the chocolate on the grahm. Then you roast the mallow. When the mallow's good and flamin', (insert blow here), you put the mallow on the grahm. Then you scarf. Marshall loves "mallow"s! He was so chunky when he was little that they called him Marshmallow; except Abby kept calling them "mellows" :)














 Kez's first smore

Bundles of joy! Thanks for lending them to us for a while Jordan!!