Transplant Stuff

Remember that time I was like, "Yeah, I'm going to post everyday about the transplant". Well, if you couldn't tell, that didn't happen.  I guess I didn't realize how exhausting this adventure really would be. The internet is horrible at the hospital so I am not able to upload any photos and by the time I get home I have no desire to get on the computer. So I shall tell you what has happened: The night before the transplant, Derek thought it would be appropriate to get rid of the sweet ‘fro he had going.  I must admit, even I was jealous of the awesomeness his afro encompassed.  But he shaved it and for a couple minutes even had a Mr. T like afro Mohawk.  

Here he is seeing the last of the outside of the building for the next month.  

 
We had to be at the hospital at 5:30 in the morning, which was tough since we didn’t even know that time existed.  He had to get surgery to get his chest catheter in and after that they just admitted him and set him up in the bone marrow wing of the hospital. 

We had a little snafu when I waited in the waiting room for 4 hours for him to get out of his 15 minute surgery.  The Mayo Clinic has this great system where each patient has a number and you are able to keep tabs on the patient if they are in surgery, when they get out, etc.  Derek’s said he was out of surgery so I gave it an hour to let him recover.  I went up to the desk and asked when I could see him and they said they would let me know but it would be soon.  Since he was getting admitted the process was a little different.  I waited for another 2 hours, starving, which if you know me is not when I am at my best.  I finally was so annoyed that I went to check on him because I was getting worried, just to find out they had already moved him and forgot to let me know!  I was so mad I just broke into tears.

Anyways, I stomped all the way to the bone marrow wing where the nice nurses showed me to my husband in his nice, cozy room.  They messed up and brought him 2 dinners but he didn’t complain.  We met with the Nurse Practitioner and Derek had to have a couple of unpleasant tests done.   

He then started chemo the next day.

He did chemo everyday for the next five days. Each day he got sicker and sicker. They had to put him on a schedule of anti-nausea meds because he was getting so sick.

Finally, on Friday the day came. The transplant!

Jason came in the morning and got all set up. The extraction process is similar to dialysis. He had been getting shots for a week that pushed the stem cells out into his blood and the machine filtered his blood and pulled out all the cells.

Derek was able to go visit Jason, since it is all on the same floor. The process took a few hours. Once the cells were extracted they had to be sent to a lab to get tested. At around 6 in the evening, the transplant was ready to get started.  It really was a simple process.

 

They infused the cells into Derek over an hour and a half. They had to keep tabs on his blood pressure and temperature to make sure he wasn't having a reaction to the infusion. Once it was all done, a nurse stayed in the room for an hour monitoring Derek to make sure he was okay. 

Today is Day +2 and he is feeling decent. He hasn't been able to eat today because of his persist nausea but he is in good spirits.  For now it is a waiting game. His blood counts are dropping, which is to be expected. But once they start increasing again, that means that Jason's cells have engrafted. We then have to wait to see how he does and make sure he does not have any complications. This could take anywhere from 2, 3, 4 or more weeks. For now, we are really hopeful and we are excited to begin this new journey in our life. I am always amazed at the love we are given by family, friends, and strangers. So thanks, we like you too.

The Day Before

I guess I should get back into the groove of blogging because, you know, I won't have anything better to do for the next month.  Today, we had our day before the transplant visit (this is the third one). But this time, we're all good!  Derek had gotten sick last week so they pushed the transplant back a week.  Tomorrow, he officially checks in to his glamorous and fun filled stay at the Mayo Clinic.  He got checked out by a P.A. and then his doctor came in, gave his blessing, and we left.  We are excited but seem to have a looming cloud hanging over us. 

For those who have no idea how this type of transplant works, this is a 3-6 week process within the hospital.  He goes in tomorrow and has surgery to get a catheter put into his chest.  Which looks a little like this:

It dangles from the outside of his chest and makes it so multiple fluids can get to him.  It is pretty gross looking seeing it on a person, so you're lucky this is all you get to see. 

He may also start his anti-rejection meds tomorrow but I do not know for sure.  On Thursday, he will start chemo.  He is in remission but the chemo is to kill off his immune system completely.  He will do chemo everyday for a week.  Next Friday, he will get his brother Jason's bone marrow cells injected into him.    Jason also has a process where he gets an injection everyday for a few days that stimulates the stem cells into his bones and then pushes those cells out into his blood.  Jason will then get his blood filtered, similar to dialysis, and those cells will be extracted.  On that same day they will put them into Derek. 

Then the waiting game begins.  Derek's blood work will show that he has none of the proper ingredients to fight infections.  Once those numbers start coming up, that means that Jason's cells have been engrafted.  Once Derek's immune system is built back up he can come home.  However, complications are not a rare deal with this type of transplant.  Because Jason and Derek had a 10 point match in their bone marrow, the likely hood of Derek rejecting the cells is a slim 2%.  So rejection is not likely.  But, Graft Vs. Host disease is up to a 50% likely hood.  A small dose of Graft Vs. Host is not threatening and can appear in something as small as a rash.  But Graft Vs. Host disease can be deadly, killing off different organs like the liver.  The fatality rate of this type of transplant is 20%, which is a terrifying number if you ask me. 

If no serious complications occur, Derek can be home in as little as 3 weeks.  We then will have to still make the trek to the Mayo Clinic every single day for a few weeks until Derek gets farther and farther out of the danger zone. 

For the purposes of letting everyone who wants to be updated about his progress I will attempt to blog everyday.  Let's hope for a super boring blog. 

Everyday before the actual transplant is numbered in the negatives, so tomorrow will be Day -9. The day the transplant occurs is Day 0 and everyday after that is Day +whatever.  Here's to hoping for the most boring 109 days of my life. 

Unfortunately, I know this will not be true.  I feel a little like this:

Over the last few days I have felt my blood pressure rising, I'm pretty sure I've developed an ulcer, and there are times when I feel a little nutty.  I am so, so scared.  This is suppose to be the light at the end of the tunnel but I can't help feeling overwhelmed and a little pessimistic (or as I like to call it, realism).  There are so many things that can go wrong and that fatality rate scares the crap out of me.  Really scares me.  Where I have had to think about things if they do go wrong.  And frankly, I am barely strong enough to deal with the thoughts, I can't imagine if those become a reality. I am also stressed about poor Camden.  He will not get to see Derek for those days he is in the hospital (minus through skype) and for a daddy's boy I imagine this will be tough. 

I am grateful for fantastic family and friends who have been loving and supportive.  I am grateful for a fabulous ward who has truly taken care of us.  And I am grateful to have my faith.  Even if I can not foresee what is to come in this life, I do know what will happen in the next and that gives me incredible comfort.

Thanks for all the prayers and kind words, we need them.  Tune in to see what tomorrow is like.  

Scan Results

He doesn't know how to act serious in a doctor's office.

Today we received the results from Derek's PET scan.  To recap: the night before he was suppose to go into the hospital and get the bone marrow transplant, the doctor canceled the transplant because Derek still had too much cancer.  Derek started a new chemo that has only been approved for about a year and he did 3 rounds of it over 9 weeks.  The results: he is in REMISSION! They showed us his scan and not a speck of cancer was on it, never seen that before.  He did chemo today and will probably do it in another couple of weeks while he gets ready for the transplant.  We do not know yet when the transplant will be but it will probably be soon now that he is in remission.  We are excited!   Thanks for all the prayers!

Transplant Update

So…the transplant is on hold.  We went to the Mayo Clinic today to do Derek’s final doctor consultation before he goes in tomorrow for the transplant.  The doctor told us that Derek still has too much cancer to do the transplant.  If Derek did the transplant it would most likely not work and his chances for a cure are lessened greatly.  There is a new drug that was approved last summer that is specifically for Derek’s cancer so the doctor wants him to start doing that.  Hopefully this drug will put Derek into remission and then into transplant.  The less cancer he has or even (hopefully) remission increases his chances of being cured by a bone marrow transplant.  Happily, Derek will get to do all his treatments at the Mayo Clinic.  We love the Mayo Clinic and we are happy that everything (blood draw, scans, doctor) are under one roof rather than the millions of different places we have had to deal with.  We are upset because we have been preparing for this moment for a long time and to be told the day before that the transplant was off was a little bit to take in.  However, we are happy that the doctor knows what is most likely to get Derek into a cure.  We have mixed feelings but we are content to do whatever has the most chance of getting Derek into remission.  Thanks for all the love and support you all have given us, we do not take it lightly.  In the mean time, look at this face.  It makes everything better:

2011

Try not to judge me too harshly with my lack of blog posting. And I would promise to get better but I know you don't like to be lied to. So in that case I shall recap the wild year 2011 has been for us.

January- At the end of 2010 we found out that Derek's cancer was back. So in January, after tons of testing and scans, Derek started chemo again. He was not happy to say the least but can you blame him? We decided that I should continue to go to school so I started my second semester at ASU (and did awesome, just thought you would like to know). It has been almost year since then so my memory may be fuzzy (or I purposely blocked it out, who knows?) but I don't think anything else happened in January. Here are some pictures of Camden in January.



February-In February, Derek started losing his hair:

Pretty wicked. He eventually just shaved it because it was grossing me out that he pulled out huge chunks out of a time.

In February we also celebrated Derek's fake birthday. His birthday is February 29th so on non-leap years we have to pretend like his birthday is on the 28th. We had a small little family get together for it.

I surprised him with the most awesome gift, an ipad! Jealous?!

And no, that is not a homeless man holding that Ipad, that is Derek.

March- In march I had a big wedding that I did. It was a lot of fun and I got to experience some flowers that I have never worked with before. I think the arrangements turned out great and the bride and groom were quite happy.We also did our annual spring break Disneyland trip. We went for 3 days. My sister and Josh (our neighbor and my sister's then-boyfriend) accompanied us for the best trip we have EVER had at Disneyland. It was seriously so much fun.



April-In April we did our second Relay for Life that is run by the American Cancer Society. During the cancer survivor walk, Derek took Camden with him. Camden thought all the applause was for him.
We did a Beach pier carnival. Camden and I posed for a picture.

We had a great time and raised over $2000 for the American Cancer Society. Boo-yah!

In April I also turned 24. No pictures were captured to document this momentous occasion. Sadly, the day was spent in class and I barely remember that day. All well.

At the end of the month we joined Marlena and Rochelle on a hike.


The young cousins got to hang out.

The kids learned what to do if they come upon a snake and how to make sure they stay hydrated. It was a lot of fun.



May- In May we went to the Ward camp out. We love our ward (a lot!) and wanted to be more involved so we made an extra effort to go.


Camden ate lots of dirt and eventually sneezed out a giant rock.

There was a boat racing contest.


We lost. And by lost I mean we epically failed. But it was a blast.

This is also the month where Camden became the notorious menace on society known as Sticker Head!
He just radiates evil, right?

June- June was a special month for us. First, we started having mysterious drawings appear on everything.
The culprit is still at large.


Camden also got to enjoy a birthday party for his friend Madden.


He had lots of fun bouncing around and enjoying the company of all the little kids.

Then on June 11th, my brother got baptized!




He asked Derek to baptize him.

And asked Jordan and I to speak at his baptism.

If you didn't know, that completes the Walls siblings. Just 5 days shy of my 5 year baptism anniversary my last sibling joined. That is pretty rad if you ask me.

July- July was an excellent month. First, Derek had a PET scan and the scan showed that his cancer was ALMOST gone. He was super close to remission and we were so happy. We could not wait to get on with our lives.

Next, our baby boy turned 2! We had a birthday party for him at Desert Breeze Park's Splash Pad.


Lots of friends and family came out to celebrate with us.

On his actual birthday we took him to the Disney store and he got to pick out a gift. Naturally he picked a stuffed Buzz and Woody from Toy Story. We had a little get together for the grandparents.


Camden did get his 2nd year pictures done by Ashlee Gibson again. They turned out AMAZING and proved how awesome Ashlee is and how my child is truly baby model material.

In July, Derek also got called to be the Sunday school president in our ward. He likes this calling and does a great job at it.

August- In August we had a sobering appointment with Derek's transplant doctor. In July we had found out that his cancer was almost gone and that a bone marrow transplant would give him a chance to be cured. We were pumped and ready to go. But at this appointment we found out all the scary dangers with this type of transplant. The doctor (unfortunately) listed all the many ways Derek could die from this type of transplant (bedside manner isn't great, but she is the best). The transplant could cure him of cancer only to kill him from some terrible effect of Graft Vs. Host disease. Needless to say, this depressed us greatly. But we persevered. Okay, Derek got over it and I cried for weeks, what can I say. Unfortunately the realization of losing Derek has been at the forefront of my mind since this point, so I can't really say that I have been all myself since August.

In separate news, I got called to be the Cub Scout Wolf leader for our ward. However, our stake has so few boys that we combine with 2 other wards to make one den. It is a lot of fun and I really like only having to teach every 3 months :)

September- In September I was suppose to run in the Disney half marathon in Disneyland but two things happened. 1) I hurt myself. And not even from a cool running injury. Embarrassingly enough, I was standing on chair steam cleaning the wall above our fireplace and the legs of the chair broke. I hurt both ankles, my wrist, and my self esteem in the fall. So I was unable to continue training. And I have yet to go back to training. I will again. Maybe. 2) We were too poor to go. I think that this depressed me more than hurting myself. I thought that this would be a great trip to get away from everything before getting into the transplant drama. Instead we went to Flagstaff to visit my sister, which was still nice. I can't find any pictures of this joyous day but we went to the county fair, a craft fair, and toured Flagstaff. The weather was perfect.

Later that week, we enjoyed a trip to the Sea life Aquarium at Arizona Mills with Lindsey and Madden. The boys enjoyed touching the star fish and seeing all the fish.


In September we were also able to witness my mom and Jeff get married! It was an adventure to say the least, but it was an awesome day, can you tell?


In September we also went to Tucson and met with the folks at the Cancer center down there. It is an amazing center and the people were spectacular. I had a really good feeling about that place, even though it was really far away. We did find out that if Derek did the transplant there, he would have to stay in Tucson for 3 months after the transplant. This did not sit well with us, even though we understood why. It would be too hard in general to swing that so we started looking into other options.

October- In October we celebrated out 3rd wedding anniversary. It was awesome. Derek told me to not worry about it and he would plan the whole thing. This was difficult for me to handle but I let him handle it. We went to a resort, ate at my favorite place (Cheesecake Factory), and got his sister to watch Camden for the night. It was a really pleasant surprise and I appreciated that he took care of it all.

Halloween was also a blast. We carved some pumpkins and Camden went trick or treating alongside our 2 neighbor girls.

Also, all of Derek's siblings got tested to see if any of them were a match to him for his bone marrow transplant.

November- In November we got Beach family pictures (which occurs every other year). They turned out great and we really like them.


Later in the month, Camden was playing in the backyard while Derek was working back there and fell on something (not sure what) and split open his cheek/chin. It was terrifying to say the least. Derek said to just put a band-aid on it but I said we should take him to the ER. So we comprimised and took him to Urgent Care. However, Urgent Care couldn't do the stitches Camden needed so they sent us to the ER. I love/hate being right. We didn't get pictures of his ER experience but here is what it looked like after the stitches were put in.


He has a pretty awesome scar. Luckily, it does not take away from his super cute face.

December- Derek had another PET scan which showed that his cancer isn't growing but it is getting more active. Which isn't the greatest news. However, we did find out that two of his siblings are a match to him for his bone marrow transplant! We were really grateful for that news and are grateful for the willingness of his siblings to help him.

We were asked by the Primary president in our ward to play Mary and Joseph in the primary's production for our ward party. We agreed, though after this year I doubt they will ever ask us again! Here is a family picture (us and Jesus):Camden got to sit on Santa's lap:



We are getting ready for Christmas. It is our favorite time of year so we have the house all decorated. We are grateful to spend this time together and be able to celebrate the birth of our Savior.


We appreciate all the love and support that we have gotten from everyone. We can feel the thoughts and prayers that are sent our way. We feel really positive about this transplant and are grateful that Heavenly Father has provided this opportunity and the hope that Derek can be cured of his cancer. Heavenly Father has blessed us with a magnificent life together and truly takes care of our every need. Our testimonies have been strengthened by the last couple of years and even when I feel my weakest I realize that I am stronger than I was the day before.

Thanks for checking out our year! Have a merry Christmas and a happy new year!

Love,

Derek, Kaela, and Camden