Welcome Message/FAQ

Thank you for your support and well wishes. We're going to post updates here as often as we can. If you would like to leave comments or well wishes, please create an account. It's simple. You just need to put in your username and email address, then you will receive an email with instructions. Note: If you have problems creating an account, then click here.
What type of cancer does Anna have?
It's called Pre-B Cell Acute Lymphoblastic Leukemia (ALL).
When did all of this start?
In the summer of 2008, Anna started feeling real crummy. Her body would ache and she was having problems getting out of bed and doing even basic things. She was back and forth with her primary care doctors a few times, then on to see a few different specialists, and a few trips to the Emergency Room. We went into the ER on Monday 9/1/2008. After running additional tests, they decided to admit her into the hospital and continued to run tests. By Friday 9/5/2008, she had a diagnosis and began the treatment process.
So, then what happened?
This short version is:

  • She had a 7 week stay in the hospital where she underwent the induction phase of chemotherapy. This was pretty rough, she lost a significant amount of weight, lost her hair, and had a lot of the other symptoms commonly associated with chemo. After the initial round of chemo, she spent a few days in ICU, and after that was primarily able to stay in her room on the 5300 unit at St. Barnabas. At the conclusion of her stay, her cancer was in remission
  • As an outpatient, she then began she began a chemo maintenance program that was scheduled to run for about two years. This required fairly regular trips to the hospital (1 to 3 times per week) for chemo, and/or for checkups with her primary Oncologist.
  • For the most part, maintenance was going pretty well. She had one short trip back in December 2008 where she had to be re-admitted to the hospital for a few days, but most everything else was done on an outpatient basis. In the early part, we required constant help with watching TJ, driving her back and forth, etc. But as time went on, she regained a significant amount of independence and was able to maintain a reasonably normal life. She was able to drive herself, watch TJ on her own, cook, shop, attend social functions, etc. There were always some good and some bad days, but for the most part, life was pretty normal.
  • In mid-December 2009, she started experiencing some sinus pressure, headaches, etc. This was initially diagnosed as a sever case of sinusitis. On Christmas day, she started experiencing double vision, which also made the headaches much worse. During the week that followed, she made a trip to the ER to get checked out, visited a Neurologist, visited her primary Oncologist a couple of times, had a couple MRIs, a Lumbar puncture (spinal tap), a bone marrow biopsy and I'm sure a few other things. As a result of this testing, the determined that she had a recurrence of Leukemic cells in her Central Nervous System.
  • In January 2010, Anna started another round of aggressive chemo treatment. In parallel, we began investigating options for a Bone Marrow/Stem Cell Transplant following the recommendation of her primary Oncologist.
  • In February 2010, Anna decided to proceed with the Bone Marrow/Stem Cell Transplant at Hackensack University and they began a search for an unrelated donor.
  • In March 2010, Anna continued with the aggressive chemo treatment and had several stays in the St Barnabas related to her treatment.
  • In mid-March, they found a likely donor and began the steps to prepare for the transplant
  • April 23rd 2010, Anna was admitted to Hackensack to begin the transplant process. This consisted of a week of heavy duty radiation and chemo to prepare the body.
  • April 30, 2010, the actual transplant occured
  • May-June 2010, Anna had a pretty serious case of GVHD (Graft versus Host Disease), which occurs as the new cells attack the body (mouth, stomach, skin)
  • June 23rd 2010, Anna was released and began treatment as an outpatient

How is TJ?
When things first started, he was barely two years old. He really didn't have too much awareness of what was going on at the time. He probably just realized that he was spending a lot of time with his grandparents. We only had him come to the hospital once during the stay, as Anna didn't want TJ to have a visual if her like that. When Anna was released from the hospital, they really started a process to reconnect. At first, some things were a little tough. For example, when TJ was a baby and he drank his milk, he always liked to play with Anna's hair. When she was first released, she didn't have hair. Over time, they really became super close as she was now with him every minute of the day. Before the H1N1 outbreak, TJ would go to most of her check up appointments and he was a superstar at the cancer center. The cancer center is a real depressing place (more on that some other time), but he'd go in and start singing and dancing and really would bring a smile to everyone's face. It felt like every day he went, there would be a new story. Since the H1N1 stuff started happening, they now restrict the areas and minors can not go to the cancer center. They are too likely to carry germs and most cancer patients are very susceptible to infection. As we're starting things up, he's more aware when Mom and Dad aren't around... definitely asks more questions and realizes that Mom is tired again. In another year or two, he'll probably be able to understand more of this, but for now he's just aware that we disappear for doctor appointments.
What happened with Tino?
Tino was our dog... he was our first child before we had TJ. He's a pure bread German Shepherd and a gorgeous dog. With everything, we had to give him up as we weren't home enough to take care of him and give him the attention that he needed. When we used to have a dog walker (back when we both worked), this family lived up on a decent size piece of land, had about 12 dogs of their own, and the wife worked at a vet, etc... so, as part of this, Tino moved in with them. For a while, we were looking for another home for him as they really didn't want any more animals, but I think he's now settled in real nice up there. Thanks Judy and Frank for taking such good care of him.
Why do you blog about this?
It really started out as a means to communicate with family and friends. Obviously, everyone that we're close with was very hungry for information. It became impractical for me to talk with everyone on the phone at every step of the process. Given that I was with her at the hospital, it was really just the quickest and easiest way to get information out to people. Also, it took away some of the negatives associated with email (ie. I didn't want people to have to read some of this at work, and I'd probably be heartbroken if I received an UNSUBSCRIBE response to some of my updates)... so this is what we started.
Along the way, it also became quite therapeutic for both of us. Initially, I found it very helpful as it gave me a way to compose my thoughts and write about things. Given that this was a pretty emotional period, writing was easier than talking sometimes (of course, I'd still call her parents, my parents, etc), but writing really helped me. Also, we really started to have quite a few people following the blog and leaving comments on my daily updates. Every night in the hospital, I'd read her these comments/thoughts/prayers that everyone was leaving, and it really helped her. Well wishes from friends/family really do help to keep the spirits high. It really became something to look forward to in an otherwise crummy day. She's also gone back through and read things from the beginning a couple times now, and I think it's really helped her emotionally.
The frequency of my updates really depends on what is going on... when things are quiet with treatment and doctors, I wont write as much. When we're active with treatments, etc, then I'll write more.
How can you help?
First and foremost, thoughts and prayers (and comments) are always great. It really helps keep her going emotionally. Additionally, while we have great family support, we may occasionally need logistical help with watching TJ or taking her to the hospital, etc. If you are in the area and available to help, please let us know. In the fall we participated in a great fundraising event called Light the Night. This year, we'll probably do the same, so we'll need help fundraising at some point, and always want volunteers to join our team.
If you want to help financially, you can donate to the Leukemia Society through the Light the Night Walk
As the path forward becomes more clear, there will likely be other ways as well... stay tuned.