tom's blog

Anna had two more rounds of chemo delivered via Lumbar Puncture this past week. She's also back on the maintenance chemo, so she's got all sorts of things going through her system now. She was in decent shape during the week - good enough to drive a little bit, but by this weekend, she was pretty beat up. Besides the chemo appointments, she went and had her blood work done for the HLA typing as part of the process to find a match. We should hear more on that in the next week or two. With the combination of all the procedures, and medicines, it's been a bit of a tough weekend for her with achiness, lack of sleep, and loss of appetite. She spent most of the day in bed today (for all the wrong reasons). At night, the sleeping pills have a bit of a weird reaction where she tends to get real chatty for about an hour after she takes them. It was pretty weird at first, but now it's kind of funny. We really try to have fun and enjoy the little things in life these days. Whether it be something like her being chatty or something the kid does, I find that we're both really enjoying the little things in life a lot more than in the past. Through this, I feel like I've really learned a lot about myself and am learning to appreciate the things that are really important in life. We've found that we've really surrounded ourselves with good people... beyond just family, it's good friends, co-workers, and a great medical team that are helping us get through this. Whether they know it or not, everyone who keeps in touch even by just reading this blog, really helps us get through. It amazed me how good it felt when a colleague recently asked "How things at home", to simply respond "do you know", and him to just nod yes... It allowed me to talk (and vent) about what's important now, rather than re-live memories that have been tucked away for some other day. Little things like that make me realize how fortunate we are.
 
Anna drove herself to the blood work appointment, and kreddy went with her on Thursday for the chemo appointment. Kreddy's going again on Monday, and then I think Anna's father is driving later this week. My mom's back next week, so we should be good for rides next week as well. After that, we may need some help with transportation again. With Anna's Aunt Teresa moving in, things have settled down a bit on the home front. She's been great with TJ, housework and making sure that there is always something healthy to eat for everyone. I think I've put on a few pounds already.
 
Months ago Anna bought tickets to see Disney On Ice. The show happened to be at 3pm today (Sunday), which of course, conflicted with the JETS game... Anna wasn't feeling well and wasn't going to be able to make it... so I had an easy out and could have skipped the show but after looking at TJ this morning, it really wasn't that tough of a decision. The kid was pretty excited to go, so I figured I'd get Dad of the Year Award... I thought it'd be a nice boys day out. As we're walking in to see the show, he starts putting up a fight saying he wanted to go home... I was close to getting back in the car, but figured it'd be worth it to fight through and actually go watch the show. After the first 30 mins or so, he settled in and had really good time... and I still got to see the JETS on DVR and no one ruined it for me. Definitely needed to disconnect from the outside world for a while, as I was frightened that someone would say something.
 
Also, a lot of folks have asked about donating bone marrow/stem cells... I'm working with the folks at marrow.org to setup a donor drive. I'm working my way through the system and really hope that by next weekend, I'll have everything sorted out. Stay tuned...
 
Thanks everyone for the continued thoughts and prayers. I've had quite a few people reach out via phone/email... sorry that I haven't gotten back to everyone. we do appreciate everyone reaching out.
 
25 days till pitchers and catchers...

She had another round of chemo delivered via Spinal Tap on Monday. Treatment went well, and afterwards she had another meeting with her primary Oncologist. No significant new information from that one. Just a normal check up and review of the possible options.
 
I went with Anna today to meet with the Bone Marrow/Stem Cell Transplant specialist. Although everything thus far has been done at St Barnabas, this procedure will happen at Hackensack. They do quite a few of these per year and really have top doctors that specialize in this. We had done some homework ahead of time - The National Marrow Donor Program website really has quite a bit of really good information.
 
Today was primarily a consultation and to lay out the path ahead. Now that they have our authorization to proceed, the next step is to get the insurance company lined up and approved for what lies ahead. That should take about a week, and then she will have some blood work done so that they can find a match. This is a little more complicated than just a blood match, in that it's a High Resolution HLA analysis (some other day, I'll get into the more clinical stuff, but for now just wanted to get a quick post up to share the info we had). Given that Anna doesn't have any full brothers or sisters, once they have her HLA information, they'll begin to search in the National Marrow Donor Program. For Northern Europeans (aka white folks), there is about an 80-90% chance of finding an adult donor in this program. For hispanics, the number is less than that, but the doctor didn't have an exact number. If they are unable to find an adult match (which is preferred), they have an option to extract what they need from umbilical cord blood.
 
From the time that she has her blood work done, it's normally about 8-12 weeks before she'll be admitted to the hospital to start this procedure. Once she's in, it is 4 days of full body radiation (twice per day), 2 days of hard core chemo, then a day of rest. Then the procedure itself, and then the recovery session. She'll hit her low point about 10-12 days after the procedure and then start to rebuild. If all goes well, best case scenario, so that she'll be released from the hospital about 3 weeks after the procedure (so 4 weeks in total). All of this of course depends on a lot of moving parts, but that is at least the plan.
 
We're convinced that this is the right option to get through this.
 
In addition to learning about the process, we also reviewed all of the risks with the doctor. Lovely chat about mortality and questions about a health care proxy. As part of this process, it's unlikely that she'd be able to have any further kids... but we're ok with that as we have TJ and he's awesome.
 
We've had quite a few people ask about donating or being tested. Unless you happen to be Anna's full sibling, and we havent met yet - there is about a 1 in one million chance that you are an exact match for her. That being said, you could of course be a match for someone else out there who is going through a similar thing and could really save someone's life. I need to do a little more homework on this over the weekend, and then will post some information on the best way to be tested. Regardless of the odds, it's now our personal cause to raise awareness and help as many people as possible... Check back in a few days for more info...
 
Thanks everyone for the continued thoughts and prayers.