tom's blog

Another day forward

We had a long day today over at Hackensack. We started with an early appointment with the Radiologist to learn about what’s going to happen during the first week when Anna’s in the hospital. During the first week, she’ll have nine doses of total body irradiation over 5 days (first four days, she’ll have it in the morning and evening, and then 5th day will be one dose). She’s brought down in her hospital bed, and then will be put in a seated position for the actual procedure. She’s in a room, but the area is open so there isn’t anything claustrophobic about it. They have a hookup for an iPod, so she’ll get to listen to music. The radiation itself only runs for a few minutes, but it’s a bunch of time to get down there, get prepped, and then switch from the left side to the right side. We learned quite a bit about the short-term effects (very similar to chemo), and then the long-term effects (little scary but I think we both expected worse). The toughest part didn’t have anything to do with what we were told…. When we were initially in the waiting room, I saw them push a very young girl (about 4 years old) past us on a hospital bed. She was clearly a cancer patient and it really tugged at my heart. I tried to hide it because I didn’t think Anna saw, and I didn’t want to start out the day out like that. Anna didn’t mention it, so I thought we were in the clear. As we were heading in to meet the doctor, Anna did see her and I could tell it really affected her. Thankfully, we had about 5 minutes before the doctor came in, so that we could both compose ourselves. I don’t think I’ll ever forget that little girl. She looked so young and innocent, but you could tell based on her lack of hair and general frailness what she had been through. She still had a cute smile on her face and really seemed content. What we’re going through really sucks… it really does, and we’ve seen lots of horrible things, but it really hurts when it’s a child.
After that appointment, we went over to a different building to meet with some other folks. First we met with Brenda, the lady who conducted the search. It was a pretty brief meet-and-greet. She referenced that she was pretty surprised at how quick they found someone, as were we. After that, Anna needed to have some blood drawn for some additional tests. It’s crazy to me, but even though we were in the same hospital complex, at least 5 times she had to provide ID, insurance information, list of meds, and fill out paperwork. The whole system is just so inefficient. It’d be so easy to pass that info between departments (and between hospitals), and it sure would help to cut down on errors. That process took a while just to get all the paperwork straightened out and find the right person to help. After that, it was over for some pulmonary work, then a Muga scan, a chest X-Ray and an EKG.
We were over there for the full day, and it was pretty action packed. Also, since Anna had another Lumbar Puncture (Chemo via spine) the day before, she was a little extra tired and in a bit of discomfort.  The rest of the week is pretty busy as well, with follow up dental work planned for tomorrow, and then a bone marrow biopsy on Thursday. Friday and through the weekend should be a time to rest, as the appointments start up after that.

Prep work and new dates

Things are continuing forward with the donor process. The donor center made contact with the individual and everything is still on track. All of the dates did move back a week to accommodate someone's schedule (not sure if its the person, or medical staff or what), but either way the current likely date for being admitted is Sunday April 18th. Between now and then, it's a fair number of medical appointments.
This week already she's had a normal checkup with her primary Oncologist, and then a dental appointment over at Hackensack. They apparently need to check to see if you have any loose teeth... I didn't really understand that one, but I'm sure there is some logical reason. With her primary Oncologist, her numbers were looking pretty good, so no other appointments scheduled with him for the remainder of the week. It looks like she should have a pretty light chemo schedule over the next three weeks, so that should really help her build some strength back up. Hopefully, when she's admitted she'll be feeling pretty good and back to her normal weight. The stronger, the better.
We had our first "physical" donor drive last week. A good friend and former co-worker, Andrew, was kind enough to have something over at his office @ Tremor Media. It was pretty cool. I brought a couple guys with me and he had another 20+ people from his office. We ordered some pizzas and had a good time. The lady from the donor organization was about 45 mins late, so that put some unnecessary stress into it (and we lost a few people who had to go back to work), but all in all, it was a huge success. Many thanks to the peeps over @tremor_media.
The blog updates will probably be pretty quiet (maybe once a week), right up until the few days before she's admitted, then we'll pick back up again with pretty regular update. Thanks everyone for your support.
If you haven't done so yet, please do register to be a donor!


We went to class on Monday up at Hackensack for "Patients and Caregivers' receiving bone marrow/stem cell transplants. The class was about 4 hours in length, and we really could have gotten by with the one hour class. There were probably about 20 people in total... most were in combinations, of caregiver + patient, so it was interesting to hear a little bit of everyone else's perspective. Some folks really hadn't read up on the process, so that really adds to the length of the class. After class, we met with one of the coordinators for another hour or so. Going up to Hackensack, I could tell we were both a bit nervous about it. She's really gotten comfortable with St Barnabas and the new place just seemed so foreign. We didn't really know where we were going, and it seemed like there was a lot going on.
We went back again on Tuesday morning for a meeting with her primary doctor performing the procedure. He went through some of the specific info, and we feel good about moving forward. The potential donor is a 9 out of 10 match (somewhere around 7 out of 10 is the minimal criteria and 10 out of 10 is perfect match). Given Anna's condition it doesn't make sense to wait around for a 10 out of 10 match, as that may never happen... and the longer they wait, the more likely it is her Leukemia will come back... and the more it comes back, the tougher it is to treat. The difference between a 9 out of 10 and 10 out of 10, means that she'll likely have a little harder time with Host versus Graft disease (where her body fights the new stuff). With all of the info on the table, this is the right course of action so we move forward. The doctor is proceeding to contact the donor center and is requesting some dates in mid-April. So, we're likely to have her admitted on April 11th, if all goes well.
After the first appointment, we arranged for a brief tour of the floor where she'll recover. This was mainly just to get more comfortable with everything. Given Monday was a bit dizzying, we thought it would be a good idea to check it out. In general, the more we know and see, the better we feel about everything. Given her comfort with the nurses and facilities at St Barnabas, we're really trying to minimize the apprehension about going to the new place. The facility is really nice. Everyone has their own private rooms, and they seem reasonably spacious (my first apartment in the city was smaller). They really encourage the patients to walk and to get in some exercise, so they have a nice little exercise room. I think we were both really happy to see everything, and we're much more comfortable now after the last couple of days. It still feels surreal at times, but I suspect that will never go away.
After that we spoke with another representative for about an hour. I think they called it psychosocial, or something like that... she was mainly worried about logistics at home (ie. do we have coverage for TJ, will we have someone who can be with Anna), as well as her psychological well being. It was a good appointment and I think we both felt better after. We had to walk through the story from the beginning, which is always a bit emotional, but overall was very helpful.
After that, we were back home... she has another checkup on Thursday with the primary Oncologist, and then some further follow up. We should have confirmation of the dates in another couple weeks, but that's the likely plan at this point...