Strep=Blessing?

I never thought I'd consider strep throat a good thing, but in this case it is. It turns out that most of Jake's symptoms after coming home last week were due to strep. He was diagnosed Monday. After a day of antibiotics, he started to turn around pretty quickly, and now he's mostly back to normal. He still has headaches quite a bit, but they seem to be more manageable and are coming less frequently.

We still have no word on a donor, but we really don't expect to for at least another six weeks. We'll keep everyone posted on that as well.

Now we'll try to enjoy the next 5 days and a fabulous Thanksgiving meal, as Jake will be admitted again on Friday morning. Let's just hope that this dose will leave his system faster and he will be able to deal with it a little better.

Methotrexate Sucks

My heart has been hurting this week. We went into this phase with the expectation that it would be easier than last phase, yet we're finding the opposite is true. Jake has been hit hard with nasty side effects, and it's so hard to sit back and watch and know that there's nothing I can do about it. The day after he started the methotrexate he became sick for the first time since diagnosis. He spent the entire day in a Phenergan/Ativan fuzz, and I wasn't even able to really contact him much so we didn't visit. He hasn't really been the same since. Also, the methotrexate took longer than expected to get down to a manageable level, so he wasn't discharged until yesterday (Saturday). After coming home, he was fine for an hour or 2, and then he got quite sick again. As a result, he became dehydrated so his levels remained the same. Then, as if things weren't bad enough, he woke up this morning in a lot of pain in his head, back, and throat. Put the throat pain on top of the loss of appetite he's experiencing, and things just aren't going near as well as we hoped. Jake mentioned earlier that "this is not how I wanted to go on a diet...". I don't blame him.

I'm hoping the next week or 2 will be a lot better for him. We check back into the hospital the day after Thanksgiving and start all over again. I'm just praying next dose gets easier, because this is awful. I absolutely hate seeing him in so much pain. This just sucks.  Please pray that Jake will have an easier time during the time between admits; he definitely needs it.

A Not-So-Good Day

This is a rant post, so I apologize in advance.

I'm extremely discouraged today. We had a meeting with the doctor and coordinator, and the 2 donor matches that were found removed themselves from the list when the registry contacted them. I'm trying really hard to convince myself that they had a legitimate reason, such as health problems of their own or what have you, but the pessimistic side of me is nagging me and I'm angry. I don't understand why someone would say they want to donate and then remove themselves when someone else's life depends on it. I guess I just feel that if you don't want to donate, don't sign up and that way nobody gets their hopes up.

It's not to say that we're out of options. They're currently going through the other potential matches and trying to see how closely they match and if they're still willing and all that jazz. If not, then we start looking at haplo-identical matches, which I'll get into later if that's what it comes to. Basically, we don't have any real information, we just have a series of potentials and possibilities. I understand why it's that way, but it doesn't make it any less frustrating.

Speaking of frustrations.... Our insurance company keeps denying our claims, citing pre-existing condition. Really? He hasn't used the insurance at all in the 10 months he's worked there and suddenly he has a pre-existing condition? Despite Jake talking to them and telling them that's not the case, they still continue to deny claims. IRRITATING!!! (That being said, Obamacare is still not the answer. Just had to put in my 2 cents. Plus I'm realizing we could likely feed a small country with the amount of medical bills we're experiencing. Good to know that people only really care about one thing...)

I guess I couldn't have expected that everything will go perfectly well. Otherwise cancer wouldn't be so dreaded. I guess I just had a sense that if everything was falling into place in the beginning, it would continue to do so. Silly me.

Anyway, I'm just getting things off my chest. I do so without expectation of anyone else understanding or feeling obligated to do anything. There's really nothing that can be done. I did, however, state that this blog was to express my feelings and experiences through this whole thing, so here it is. There have been better days. I anticipate worse in the future though.

(PS...our family, friends and neighbors still continue to show their love in such special ways. Thank you! We haven't forgotten you even in our frustrating times!)

On to Consolidation

One thing I've noticed about dealing with cancer is that you get asked to drop everything for an immediate admit. Fortunately for us, we were able to postpone this admit by a few days in order to take care of some things at home first. It definitely helped relieve the chaos and stress, but I know that we won't be so lucky when it comes time for transplant.

As most of you have probably heard, Jake is in a great spot in his fight. His last bone marrow biopsy revealed 0.1% leukemic cells, which means we progress to the next phase, which is more of a maintenance phase than anything. He was admitted to the hospital this morning and is receiving fluids for hydration as well as bi-carb to help ensure his pH is where they want it to achieve optimum results and allow his organs to function as well as possible. Tomorrow he will begin high-dose methotrexate over 24 hours, and will be discharged as soon as that clears his system to a manageable level.

As far as what the rest of this phase has in store for us, I'm not sure yet. We will be meeting with the doctor to discuss all of that tomorrow afternoon. I think we're both excited and anxious to get this going and done with so that we can go through the transplant hell as soon and as quickly as possible.

As a side note, we finally got family pictures done. We haven't had any since we were married, even after the baby was born almost 2 years ago. I'm so glad we were able to do this, and for Jake's friend who helped by taking amazing pictures! It was one of my fears that we wouldn't get it done before Jake lost hair or looked too unhealthy, but by some miracle he still looks great! I'm glad we were able to capture this time in our lives. (Special thanks to kSwiss for making it happen)

I anticipate this phase being relatively slow, but I'll keep updating as I have news and if things change.