What Comes Next

On May 4-5, I had my last Bendeka/Adcetris treatment. We had a PET scan on June 1st to figure out if the treatment had worked or not. We were hoping the scan would show no cancer. If that was the case, we hoped I would get 1-2 years cancer free before we had to consider more treatment. The Bendeka/Adcetris was never going to be a permanent solution, but we'd hoped it would be a temporary one and that my body would get some time to recover.

Sadly, that's not the case. The news isn't ALL bad, but it's not good news either. The cancer outside my lungs does appear to have cleared up entirely. No cancer in any of the places that Hodgkin's traditionally grows, like in my lymph nodes. Unfortunately, my lungs are a different story. A couple of the places that have been showing up on my scans are still showing up and one or two new places are showing up now too. They're small relative to my worst scan, but they're there. And the places that have been there all along have increased in SUV (intensity) too.

Dr. Essell, my oncologist, on a huge mural that greets us as we get off the elevator.

Before we rush into what will be a risky new treatment for me, we're going to do a bronchoscopy and biopsy a piece of my lung from one of the affected areas. If that biopsy shows Hodgkins (and we expect it will) then we'll move on to the risky new treatment. I'll need a clear COVID-19 test before the bronchoscopy, and I've already gone for that. We haven't gotten the results yet, but I expect it will be negative and the procedure will happen as planned late this week.

A bronchoscopy involves a pulmonologist snaking a tube down into my lung. The tube has a camera so he can look around. The tube will also (1) spray fluid into my lung then recollect the fluid for lab samples and (2) allow the doctor to take a lung biopsy. For those of you following along, you might remember that a lung biopsy from a bronchoscopy is how we initially rediagnosed my cancer this time around.

We assume that will again show the Hodgkin's lymphoma is in my lungs. We're out of any decent chemo options, so we're looking at immunotherapy now. Immunotherapy is a really exciting option for folks who have not had an allogeneic stem cell transplant (one using donor cells). If this immunotherapy option existed in 2011-2012, I likely never would have had a second transplant. It is a relatively easy treatment (compared to a transplant) and can send folks into remission for decades.

But I've already had a donor stem cell transplant and that complicates things. Now my immune system actually doesn't match up perfectly with my body. My immune system is a carbon copy of my donor's immune system, and although we matched very closely, that immune system doesn't always recognize my body as belonging to it. That's what causes graft versus host disease (GvH). My donor immune system (the "graft") doesn't recognize my eyes or the lining of my mouth, or occasionally my muscles (the "host") and the immune system attacks them. Thus all the eye drops and other creams, ointments, and issues.

So Immunotherapy stimulates a person's immune system. In my case though, it's stimulating my donor immune system, which already takes issue with my body. We run the risk of it dramatically stimulating my GvH also. If that happens, we'll discontinue the Immunotherapy and throw a bunch of steroids at whatever flares up. But it's risky. If we don't catch the GvH in time, the steroids might not be enough to stop it from attacking my body, possibly fatally.

Beyond the risks of Immunotherapy, we also don't have many options if Immunotherapy fails. It's potential benefits are amazing. Immunotherapy could eliminate my cancer for years... maybe even decades. But if it spikes my GvH out of control OR if it doesn't work for me, we don't have any further treatment options with much promise. We can try clinical trials or we could do more chemos, but neither offer much promise.

For now we're just hoping I can tolerate the Immunotherapy, that it doesn't overstimulate my GvH. and that it works. It would be amazing if it worked and I went into remission for a really long time. So fingers crossed guys. We need this one to work.

Hives and High Notes

So my first round of Adcetris/Bendeka turned out to be pretty brutal. I had treatment on a Tuesday and Wednesday, and I just felt tired up through that Friday night. But late Friday night and into Saturday morning things got uglier fast. My insides liquefied and I was in and out of the bathroom frequently for the next six days. That and the steroids combined to prevent me from getting much solid sleep too. I had no energy at all. I didn't even want to listen to music or have the tv on. I just wanted to sit in our big chair in the silence and breathe. My resting heart rate hovered around 120 BPM and I just felt like the life had been drained out of me. But after about a week, things started improving just the tiniest bit each day. By the week after that, I started feeling human again. My remaining hair also fell out that week, but at least I was feeling better.

So we expected my second treatment to hit me just as hard. We cancelled a Valentine's road trip we'd planned to go see one of my favorite bands in concert. Sixteen hours round trip in a car sounded like a really terrible idea if my insides were going to liquefy again. As a sort of consolation prize (but also as an early birthday present) Alan got us tickets to see Les Miserables, which just happens to be my very favorite Broadway musical. Unfortunately the run of the show started on my first day of round two of treatment. Reasoning that it would be better to go sooner rather than later, Alan snagged a couple of wonderful seats for that Tuesday night after treatment. 

But some of you might remember that after round one I slept almost all of Tuesday night because they gave me Benadryl as a pre-med. I hadn't experienced any sort of reaction to the treatment though, so I decided to ask if we could skip the Benadryl for round two. And Dr. Essell agreed. My confidence that I'd be okay was the pride before the fall. 

Day one of my second round of treatment went as expected, just without the Benadryl pre-med. Then I came back home, had a bite to eat, and then we headed out to the theater. Things were going great! We arrived early and had plenty of time to make it to our seats. (I move a lot slower these days). The show was wonderful (alright, Fantine started out a little tinny, but she finished strong and Eponine was very nearly perfect). But just before intermission I noticed that my scalp was SUPER itchy and felt warm to the touch. Then that sensation spread to my neck and began spreading across my face. I expected to be a splotchy mess when the lights came up. Luckily it was less noticeable than I feared. We contemplated going home then but I hadn't heard "On my Own" yet and my throat/breathing didn't seem affected at all.

We enter act two with about 1/3 of my body in hives and my scalp (under my toasty warm hat) shrieking to be scratched. I'm certain our seat neighbors thought I had lice instead of cancer. As the hives spread further and further and the play soared on, I felt colder and colder. Seems my hives were accompanied by a fever and by the end of the show I was physically shivering. I also somehow dehydrated so badly I had no saliva in my mouth. Even getting out to the car was an ordeal, as my heartbeat was racing and I had to sit and take breaks. When we finally got home, Alan scurried around getting me Tylenol and Gatorade and blankets and Benadryl. Finally, after about an hour or two, my fever was gone and my itching was bearable. But we heard the people sing!

I had to explain that despite my hives and all the other nastiness, that night actually counted as a win. It's tough to still get out to do the things you love when your body constantly betrays you. But I was able to experience my favorite Broadway musical, even if I was itchy! I won't remember much about the days that I spend resting in the big chair. Those days are necessary, but I'm not making memories. So when I have the chance to make a memory, even if it's an itchy one, that's a win.

Since then, my second round side effects haven't been nearly as bad as they were the first round. I had treatment on a Tuesday and Wednesday and my insides again liquefied Friday night. But that only lasted a day or so. My stomach is still not entirely right, but I can sleep through the night with no urgent trips to the bathroom. I'm still very tired, but music and tv are fine and I can even get up to do things like get myself a Gatorade or a snack. I've also been experiencing a thing where some foods don't taste right. This happened to me in the past with a different chemo, but now it's different foods that taste wrong. My neuropathy in my hands has spread into my palms, but I'm still able to crochet a bit if I pay close attention to what I'm doing. And my heart rate has crept down to where my resting rate is around 100 BPM. So all in all, it's not a picnic, but I'm surprisingly feeling better this round than last!

Shawntel and the Terrible, Horrible, No Good, Very Bad News

We've gotten bad news you guys. I'll go into more details in this post, but it boils down to this: My most recent PET scan shows my cancer in my lungs exploding. It's growing larger and more intense at a terrifying speed. My resting heartbeat is around 114 and I can't walk from one room to another without getting a little out of breath. Bad news all around.

More details:

After my last post I had two Adcetris treatments and was feeling much better. I was breathing easier and able to get back to some around-the-house chores. Dr. Essell wanted to get a scan a little early, which we did just before my third treatment was due. That scan was really promising. My cancer had shrunk almost everywhere. The cancer spots in my lungs seemed resistant, but they'd either shrunk a tiny bit or remained the same. It seemed like we were moving in the right direction.

But I began experiencing neuropathy in my hands. At first, it was just tingling in my fingertips but it steadily got worse. I began dropping things (because I couldn't gauge the right pressure to hold them) and I started losing hot/cold sensations in my fingertips. Plus the tingling had moved all the way up my fingertips and was threatening to move into my palms. Dr. Essell had warned that we needed to keep an eye on the neuropathy because it can become permanent. So on the day I went for my fifth treatment (12/30/19), Dr. Essell decided to hold treatment due to the neuropathy.

I'd also started regressing a bit with my breathing. I was getting winded more easily again, even before we discontinued treatments.

So it was time for another PET scan (not according to insurance, but Dr. Essell again convinced insurance it was necessary to do a bit early). And he was so right. I went January 10th for my scan. My last treatment had been December 9th, just one month prior. But the scan was shockingly worse than we could have expected. Some areas of cancer had more than doubled in size and intensity. There were other, new areas showing up where the cancer has grown in new places. There was no improvement, only significant worsening. If the scan that rediagnosed me was my worst scan ever, this scan was probably at least twice as bad.

That's were we are now. I have absolutely no energy to do anything. Even things you sit and do. I don't watch tv. I don't crochet. I just sit. And even with that zero-level of activity, my heart rate is averaging around 114 bpm. The cancer has also been causing me to have fevers every day for over a month now. That lack of temperature regulation, and just the cancer in general, is also giving me night sweats. Night sweats are gross and a big inconvenience when your washer and dryer are two flights of stairs down from your sweaty sheets. Blech.

In what is maybe a tiny bit of good news, we've weaned me off more immunosuppression. I'm just taking one Jakafi per day (down from two a day). It's possible that's going well. It's also possible that worsening GvH is causing my heart rate increase. Tough to tell, but for additional treatment options to be on the table, I need to get off the immunosuppressants.

What's the plan then? Well it's not a plan B, plan C, or even plan F. We've burned through a lot of plans in past bouts with my cancer. But there is a plan. Starting tomorrow (1/21) I'll be going back on the Adcetris and pairing it with another chemotherapy. My breathing decline while I was still on the Adcetris treatments probably indicates that my cancer was becoming resistant to that treatment. So we can't simply go back to that alone. We're adding the new chemo hoping that it is effective on the cancer in my lungs (and elsewhere). We'll monitor how I'm feeling and eventually we'll get another scan. 

We'll also continue trying to taper my immunosuppression. If the Adcetris/chemo combo doesn't work, my remaining options are the immunotherapy that I mentioned in my last post. That runs the serious risk of spiking my GvH and my GvH killing me instead of the cancer. There's also a CAR-T therapy trial that I might be eligible for, but trials are scary because in my case it would very much be sort of a last ditch effort. But we're running low on options.

It's also worth remembering that my organs have already been through the wringer. My favorite musician, Jason Isbell, has a lyric that goes "heart, like a rebuilt part, I don't know how much it's got left." My body is sort of like that. I've already asked it to endure a lot, so more chemo is beating down a body that's already pretty beat down.

All of which is to say, we're doing our best to keep our heads up over here, but we're honestly all pretty scared. This is scary news. There's no other way to spin it. 

Cancer: The Reboot of the Sequels to the Unwanted First Five Episodes

Horror movies are notorious for continuing to come out with sequels long after you were CERTAIN the bad guy couldn't possibly have survived that last ending. In much the same vein, my Hodgkin's lymphoma has decided to reprise its role in my chest. An unwanted new chapter in a saga that even my doctor promised me was LONG over.

So how did we get here? I haven't posted since 2017, so there's quite a gap, but I'll catch you up as quickly as I can.

The Imbruvica from my last post? It made me feel like hot garbage and it also caused lumps to start growing under my skin (extra points because that was not a known side effect). We tried decreasing my dose but it didn't help. So I was taken off of it before it ever had a chance to have any impact on my GvH.

Later, I started a drug called Jakafi. The details are not super important for this post, but I've been on it for awhile and it's supposed to be helping with my GvH. The GvH isn't really any worse, but it isn't a whole ton better either. It's very livable though, more an inconvenience than an active threat.

I started having more issues with my breathing and my lungs. We did two bronchoscopies and two or three CT scans. The scans looked different every time, but always concerning in some new way. The bronchs didn't turn up anything helpful. It looked like my lung was slowly collapsing and that other parts of my lungs were being overtaken by scar tissue. I was getting winded at the smallest things. I finally broke down and got a handicapped placard because walking on even the slightest uphill grade was exhausting.

That more or less brings us up to the last month. I'd had another CT that showed concerning lung images and we scheduled a third bronch. My pulmonologist took a biopsy during the bronchoscopy and that turned out to be where everything started to come unraveled. Initially, the local lab couldn't identify the cells in the biopsy. So they sent the cells to a world-renowned expert in Nebraska...who also couldn't identify the cells at first. But the guy in Nebraska WAS able to say that the cells were definitely abnormal. That bought me a PET/CT scan.

Several years ago, Medicare ruled that a person could only have 3 PET scans in their lifetime. I had already had probably 15 or more, so that meant no more fancy scans for me. But PET scans are the best scans for imaging Hodgkin's. They can show the size and intensity of any cancer that shows up. Plus they're in color! So without a PET scan we had no idea that what we were seeing on the CT scans was cancer. And we didn't have much reason to suspect it because Hodgkin's doesn't relapse after seven years of remission. It just doesn't. Except when it does.

So the abnormal cells in my biopsy were a good enough reason to get Medicare to spring for a PET scan. My first in years! I was really very excited because I hadn't had a PET in so long and I knew the images were infinitely better.

And boy did we get images. I have Hodgkin's in my lymph nodes. I have it in my lungs. You guys, I have it in my BONES. My literal bones. This is the worst scan I have *ever* had. By a lot.

Ugh. Ugh forever.

So today I started treatment for my shiny new Hodgkin's lymphoma. The reboot no one asked for or wanted. I'm starting with a chemo I've had before called Adcetris (or Brentuximab). We used it both before and after my second stem cell transplant and both times it was 100% effective at eliminating the cancer. I'm optimistic about that.

We're also taking me off some of my immune suppressants, with the goal of eventually getting me off them entirely. We have to be careful with that though. Without the Immune suppressants, my GvH could flare again (like when I had myositis) and that could try to kill me. But we want my donor immune system to do what I got it for in the first place: fight the cancer. The less we suppress it, the harder it can fight.

If I manage to get completely off the the immune suppression and my GvH isn't out of control, then I can try immunotherapy to further treat the cancer. It's a newer option and is wildly effective. If it had been available in 2012, I most likely never would have had a second stem cell transplant. But I'm honestly not overly optimistic that my GvH will cooperate for that. It could be an option though.

The plan for now is to do four cycles of Adcetris, which I go to get every three weeks, and then to have another PET after the fourth dose has had time to do its thing. If I'm lucky, I won't have many side effects from the Adcetris. I didn't the last time. But you never know. We'll reassess then and plot a continuing plan of attack.

Overall I'm just so bummed about all of it. Not angry, not terrified, not weepy. Just tired and SO over it. I've done this all before. The diagnosis is the same. The treatment is the same. Admittedly, the scan and the starting point are worse, but it's all so sickeningly familiar. I DID THIS. I beat it. We celebrated.

But the bad guy wasn't dead after all.

Some People Get Allergy Shots, I Get Shots of Radioactive Sugar...Still Not a Superhero

Approximately every 3 months I go to the hospital for a PET/CT scan. I've been doing this for years now. I'd love it if they had a punch card for regular customers. The very sweet ladies who work at the radiology check-in desk recognize me now and comment on how long my hair is getting. Each scan retails for about $4,000 or so.

Still, scans are fantastic because they are the only way for me to tell if my cancer is responding to treatment. Since I don't have any physical signs of having cancer right now, there's no way to know if the cancer is retreating or charging forward...until a scan.

The scans themselves are rather dull. I arrive at the hospital after fasting since the evening before. A couple times in the past I had to drink the barium "milkshakes" before a scan, but haven't been "treated" to those in a long time now. I just go in, answer a few quick questions, and get a finger stick to check my blood sugar. Assuming my blood sugar isn't too high (and it never has been) then I get injected with radioactive sugar (aka. the tracer). This is my favorite part. The sugar comes in a plastic syringe (just like any other injection) but because it's radioactive there is a thick, heavy *lead* protective outer cover. It always makes me think of Superman and kryptonite. Except in this scenario everyone in the radiology department has a weakness to it, but they're gonna inject it directly into my veins and let me metabolize it for 45 minutes. I'm not a superhero yet, but I'm taking my vitamins.

What's that "special glow"? Radiation!

After the tracer is coursing though my body, the staff dims the lights and leaves me in a quiet room for about 45 minutes or an hour, presumably to see if I turn into the hulk or bite any unassuming, non-radioactive spiders. That hasn't happened yet (blech, spiders), but what usually does happen is that in any areas in my body where cells are reproducing rapidly (you know, like cancer cells) the radioactive sugar is sucked up because those cells require the energy the sugar provides to keep reproducing so quickly. Then they run me through a machine that takes cross-section pictures all up and down my body to see what bits are lighting up as radioactive, and if those bits are any bigger than they were the last time I had a scan. For me it just means lying still with my arms above my head for about 30 minutes. Then I'm finished, which by this time is a huge relief because I've not eaten in awhile and could really go for some lunch.

And yet, while I'm generally bored by the scan procedure itself, I do appreciate the almost magical technology setting us apart from a century or two ago when I'd probably be going for blood-letting instead of radiation enhanced pictures of my innards.

No News (is Good News)

I've started getting messages from folks wondering how I'm doing, which probably means it's been too long since I've updated everyone on how my treatments are going. I guess I kept waiting for something eventful to happen so I could report back, but this latest treatment is actually a treat compared to my previous chemos.

After the first round of Adcetris I did have quite a few headaches, but they weren't migraines and could be kept under control with Tylenol. Thank goodness for that, since acetaminophen is the strongest pain killer I'm allowed to take. A few other minor side effects proved to be minor annoyances, but everything has been very manageable. The most significant difference I've noticed is that my body is tired, so when I go to bed I'm liable to sleep for 10-12 hours some days. While I'm awake though, I don't feel overly fatigued. All in all, I'd much rather go through an Adcetris treatment than have the flu or a stomach virus. (Though I'd trade my upcoming transplant for either!)

With treatments only happening every 3 weeks I've had plenty of time to rest between each round. I've been trying to balance my eating between indulgence (ex. the mexican fire chips I brought home from Cancun, UDF ice cream, and Cincinnati treats) and healthy choices (ex. broccoli, green tea, fruits) but I suspect indulgence is winning out. Cincinnati is just too delicious.

Home-brewed loose leaf tea isn't bad, but it also isn't Penn Station, Skyline, or Izzy's.

My doctor told me that while I shouldn't drink alcohol for the most part, with this treatment I could have an occasional drink if it was for a celebration or a special occasion. I had one margarita in Cancun and I'm planning on toasting my upcoming 31st birthday with friends.

I'm still not sure if I'll lose my hair with this treatment or not. In the only study that's been done on the drug (sample size = 100 patients) only 13% experienced allopecia (hair loss). With chemos the drug doesn't make your hair fall out immediately, it takes several weeks. Since I've only had 2 treatments, the jury is still out on whether I'll be sporting my hats again soon. I hope to figure it out before too long though. If it's not going to fall out I'm in desperate need of a haircut, but no sense spending that money if it's going to shorten up on its own!

For Valentine's Day this year I'll have my third date with Adcetris. We'll wait a couple of weeks after that treatment (for the medicine to kick some cancer arse) and then get another PET scan (to see if Adcetris and I are working out or if I'm just getting the run around). Depending on the results of that scan I'll either (a) get ready for transplant (b) continue my dates with Adcetris or (c) have to break it off with Adcetris and start seeing a new chemo drug. While Adcetris might not bring me flowers or chocolates, it's also not brought me any nausea or mouth sores, so I'm hoping options a or b work out.

Stem Cell Transplants 101: What's the plan?

I realize that for most people the news that "I'm getting a stem cell transplant" is about as meaningful as me saying "I'm having my naruffula collar removed" (which is to say that it sounds concerning, but doesn't mean a lot). This post is meant to serve as a sort of introduction for non-medically oriented friends and family, who would like to understand what this process will entail.

For starters, the stem cell transplant is not the first step in the process. I have to go through preparatory treatments (and those have to be working) before we move forward with the transplant itself. In the past, these treatments have always come in the form of chemotherapy. (Definition: Chemotherapy is basically poison that is most effective against cells that reproduce quickly, like cancer cells, hair cells, and the cells that line the interior of your mouth. That's why many people on chemo lose their hair and/or get mouth sores. But it is poison, so it makes people nauseous and feel cruddy). For my first transplant (Dec '09) I tried one prep regimen of chemo that ended up not being totally effective. We had to switch to a different sort of chemo, which shrank my cancer some but not completely. That was enough to move forward with the first transplant though.

Luckily for me there is a new treatment for Hodgkin's patients who have relapsed after an autologous stem cell transplant. (Definition: Autologous stem cell transplants are transplants where a patient's own stem cells are used, like my first transplant. These are less dangerous than Allogeneic transplants, which are transplants where the patient receives a donor's stem cells, like my upcoming transplant). The new drug that is available for treatment is called adcetris and it's only been available for the last 2-3 months. It was fast-tracked through the FDA's drug approval process after showing promising results in clinical trials (30% of patients had their cancer shrink down to nothing, another 42% had their cancer shrink somewhat). The great thing about adcetris (in addition to having good results) is that it is NOT chemo. This drug is a monoclonal antibody. (Definition of Monoclonal antibody: Your guess is as good as mine). So I'm not sure exactly what that means, but it's not poison and my doctor assures me that it will be the easiest treatment regimen I've been on so far. Since it's not chemo, I shouldn't have all the cruddy side effects associated with chemo. I'll get the drug once every three weeks. It only takes 1 hour to administer the drug, and then I'm finished until 3 weeks later when I go in for another dose. I'm also excited because this leisurely treatment schedule means the doctor probably will allow me to go through it without getting a port again. (Definition: A "port," or more correctly a portacath, is a small device that sits under one's skin and provides easy access to a vein. It feels like a MicroMachine lodged under your skin. Doctors and nurses can stick a "needle" in it, which Brynn calls a "nail," to administer medicine or fluids, or to draw blood. It's handy if you need to get stuck a lot, but for me it probably won't be worth it this time around).

My port, version 1.0 (in use). I'm hoping to avoid the 2.0 install.

We'll do 3 rounds of the adcetris (so for 9 weeks total) and then we'll do another PET/CT scan. (Definition: A PET/CT scan is an imaging scan that helps the doctors see where the cancer is and if it is growing or spreading. They inject radioactive sugar into my blood, which is mostly absorbed by rapidly reproducing cells, like cancer. Other kinds of cells that reproduce rapidly can absorb the sugar, like scar tissue, which leads to a false positive. Then I'm put in a machine that takes thousands of images of my body and shows where radiation is coming from. Since the cancer cells absorbed the sugar, and thus the radioactivity, they show up on the scan).

(Option 1) If that PET/CT shows continued growth of the cancer, we'll scrap the adcetris and try a chemo prep regimen. (Option 2) If the cancer has disappeared, we'll move forward with the transplant. (Option 3) If the PET/CT indicates that the cancer is shrinking but is still there, we'll continue with additional rounds of the adcetris and then reassess with another PET/CT scan at a future date.

Once we've shrunk the cancer down it will be time to move on to the stem cell transplant itself. Even if the adcetris eliminates the cancer altogether, the Hodgkin's might come back without the stem cell transplant. The transplant starts with a huge, HUGE dose of chemo. A dose SO huge, it completely kills my entire immune system. The hope is that the chemo kills off any remnants of the cancer, wipes my immune system clean, and we start with a blank slate. The problem with that, is that without an immune system I'd be a goner. Seriously, if we took no other steps after the "killer" chemo, I would die. This is where the stem cells come in. My body still hasn't fully recovered from the first transplant, so it's not making enough of its own stem cells for me to provide my own for the transplant. That's why I need a donor. So after the "killer" chemo has done its job and I have zero immunity to any germ in the world, I will receive the gift of life (aka. stem cells) from a donor. (Note: It is the chemo that might, fingers crossed, cure the cancer. The stem cells just repair my body after the chemo has devastated it).

***Revision 3/14/12: In an allogeneic transplant the above description isn't quite right. In my case I will receive an intermediate dose of chemo before my transplant which will take my immune system down very low. I will receive donor cells and grow a new immune system (which will be the donor's immune system). The hope is that the new immune system recognizes any future cancer growths as abnormalities and attacks them. So the part above about the killer chemo being what eliminates the cancer is wrong. In an allogeneic transplant we're counting on the donor's immune system to keep any future cancer in check.***

Those stem cells will be infused into my body just like I was getting a blood transfusion. It's really kind of anti-climactic, and the nurses say everyone smells like creamed corn on the day of their transplant. Those stem cells are the building blocks for a brand new immune system for my body. But it takes a long time for that new system to be built and begin to work. In the interim, the danger is that I might get sick. With no immune system my body is entirely susceptible to any germ that comes near it. I have no defenses. The doctors can treat me with antibiotics, but often times that's not enough. Many people who receive transplants die from infections that they couldn't overcome.

One of the bags of my stem cells. Looks unexciting, saved my life.

From beginning to end the transplant itself, which is all spent on one hallway of the hospital, takes anywhere from three and a half to six weeks. Possibly longer with complications. Patients are terribly bored and many are depressed. Children under 14 aren't allowed on the floor at all, ever, for any reason. During my first transplant that meant I did not see Brynn for over 4 weeks, which included Christmas. I watched her open her presents via Skype. It was tough, but I knew that getting that transplant was the only chance I had of celebrating many, many more Christmases with her. I'm disappointed that it failed, but I'm committed to doing whatever is necessary to be around for many more Christmases. If that means another transplant, then that's the plan.

**Disclaimer: I am not a doctor (obviously). This post is full of my best attempt to understand my own treatment and share that understanding with others. Please do not confuse this with a real medical explanation from a medical professional.