2017 PHOTOCHALLENGE, WEEK 2: WE ARE WHAT WE EAT

As a 2.5 year old bone marrow transplant recipient, there is something cathartic about making my own bone broth for use as a base in homemade Pho soup. I roasted this before crock potting it into a tasty bone broth. You are what you eat. 🙂

Well, the time has come…

The time has arrived for my bone-marrow/stem cell transplant. The actual transplant won’t take place for over a week. There’s some prep-work to get done first. Most of it isn’t very fun, however.

There really isn’t much I can share that you readers of my blog don’t already know. Today I’m being remanded readmitted to UCLA. As I type we’re sitting outside of Admitting, waiting for my room to be finished. (Since I’ll be on the Leukemia/Hematology Wing for a while, they’re cleaning up a good room for me. One with a decent view.)

Tomorrow I should start my full-body radiation. That’ll go twice a day, for 4 days. Then I’ll get several days of high dose chemotherapy. Then I’m supposed to get a day off of “rest”, then the following day should be the stem cell transplant. Last we heard, that’s scheduled for July 3rd.

Assuming this schedule is still accurate, the donor, whom I do not know, will have their bone marrow harvested on July 2nd, and it’ll be shuffled off to UCLA, via LAX. As I’m typing, I’m overcome again that some skinny young guy is choosing to endure this donation, for me. What a gift.

I’ll try to keep the updates coming, but this journey is bound to get harder before it gets easier. So, bear with me, and ask questions if you have them. Feel free to post them in the comments, or to me on any of my social media profiles.

We continue to covet your prayers, as this journey continues. My unbelievable wife has cared for me in the most amazing ways, and honestly, I’m not that easy to wait upon. She too benefits from your prayer support. Our kids continue to be hosted primarily by my parents, but the upcoming couple of months will go back to being a little creative, like last year. My father-in-law will be caring for them a little. One of my closest old friends has volunteered to host the boys for a long weekend of what I can only imagine will be some great fun and memory-making. And at some point we may even do the musical-house-thing back at home, with our church community hosting the kids again. Deanna will be trying to stick to taking the kids home each weekend, for the normalcy of regular church attendance and a chance to touch base and connect with them. So, pray for her miles and miles of traveling as well.

I yearn to continue to NOT…waste my cancer. It’s my goal and mission, no matter where this journey takes us.

Who wants a transplant?

This guy!

If you haven’t heard, a bone marrow match has been found! I have to wait a whole year before I get to find out who is doing the donating, FYI.

I’ll be readmitted to UCLA on June 23rd, and the actual transplant should take place on July 3rd. There will be some outpatient fun, next week. And then once I’m remanded admitted, I’ll have a fixed schedule of activities, all for the protocol of prepping me for the transplant. Because my relapse back in April showed some leukemia in my CNS (central nervous system), I’ll be getting some radiation on my head and then some full body radiation as well. Then, for a few days before the transplant, I’ll get the highest doses of chemotherapy I’ve had yet.

All of that is designed to truly wipe out any remnants of leukemia anywhere in my body, then wipe out my bone marrow as well. Once that’s achieved I’ll get the new stem cells. (They’ve decided to transplant donated stem cells and not actual true bone marrow.)

Interestingly enough, this is when the difficult part of the journey begins. There are risks that I could get sick, with such a diminished immune system. So, the medical peeps will be working hard to avoid all that. Some of my treatment will be preventative. And of course, any setbacks will be addressed. But after the transplant, I’ll go onto a gazillion different medications. There’s this concern about rejection, aka Graft vs Host Disease. Everyone gets a little GVH, so I should expect it. And, they’ll treat anything that arises. But that’s the biggest concern. Assuming all goes well, after around a month to a month and a half I’ll be discharged. However, I won’t be going home. I’ll be staying at what is basically a special hotel across the street from the UCLA hospital. Staying that close will allow me to be super close in case of a setback or worse. Also, I’ll have nearly daily appointments at the clinic. My stay there should be about a month long. Obviously all these ballpark timelines could be adjusted. Hopefully shorter! 🙂

But even after I get back home I’ll have a while to go on this journey. Many things will have to be put off, for now. I’ll start off with a lot of limitations, even going out in public will be limited with some “rules”. Assuming I continue to recover, I’ll get better and better. My post-transplant care will extend to several important milestones. First will be 90 days after transplant. Then 100 days after transplant. Then 6 months, then 1 year. Many of my new meds will continue for the bulk of that time.

I’ll keep you updated and posted with any changes and updates, fo sho!

Thus far, we’ve had just enough to meet our obligations. But that’s only been when so many of you have helped out. Thank you! For those interested in helping out a little more, feel free to click the button below.

So, I have a nice long stay at UCLA ahead of me. It’s going to get harder before it gets easier. My wife especially has a tough job for the next few months. She’ll be my primary caregiver, 24 hours a day, for quite a while. She has literally thousands of miles to travel, to and fro, Camarillo to UCLA and Santa Maria to UCLA, and back and forth and back and forth. There will be much eating out, for her especially. The poor kids will be in a bit of limbo, crashing at my parents’ and sister/bro-in-law’s and getting to go home on the weekends, sorta. Hopefully our summer will be the bulk of it, and I’ll be headed home at the end of August or early September. Only the Lord knows.

Thus far, we have been truly blessed by all the levels of support, starting with the massive network of prayer that continues today. Of course the financial support has been fantastic as well; starting with so many of my coworkers donating their vacation hours, to help us bridge the gap from my sick time ending and our long term disability kicking in. Additionally all the logistical help has served us well. At home there has been many who helped care for our kids; staying at our home with them and feeding them.

We thank you so very much. The Lord has been so good to me. I have the most incredible wife, you truly do not know. I have the kind of wife that young men truly hope in their hearts they are blessed to marry.

*****Update*****

Loved ones, I have an update on my schedule next week. We’ll be crashing at my parents’ place Tues-Thurs, at least. I have 3 days of radiation at UCLA, and that decreases our commute.

We may end up needing to go down on Friday too, that is yet to be determined.

Then we’re back for the weekend, before heading down to UCLA for the long journey that will be my stem-cell transplant, and recovery.

Bone Marrow Match

Assuming all of the details are worked out over the next few weeks, it appears that I have a matched bone marrow donor. It’s pretty good news! We’re a bit excited around here.

I’ll have a few visits with my doctor, down at UCLA, as we and they prepare for my readmission. I’m also going to have some exciting treatment, to prepare my body for the transplant. Of course I’ll get more chemotherapy, yeah. They need to drain my bone marrow, so that when I get the new-to-me bone marrow, it can be the source of my recovering immune system.

If you recall, I had a little leukemia in my CNS, this last time. (That was why I had to have all that chemo inserted into my spine!) Well, in order to make sure it’s really gone, they’re gonna irradiate me. This will be my first radiation, so yippy for that. I’ll get a little especially for my brain, before I’m readmitted. Then I’ll get full body radiation once I’m admitted.

Everything is tied to the donor’s schedule, for now. So, with a tentative date just over two weeks from now, my readmission might be then or a little after.

So, join with me as I pray for Wolverine’s powers. I’m good with bone claws, BTW.

wolverine_bone_claws