Monday, March 5

We spent our first weekend here at the Spaulding Rehabiliation Center. Hannah really likes it here, and is happy to go to therapy. Each day during the week, she receives physical therapy and occupational therapy as well as speech therapy. At St. Charles, the therapy was difficult, and at first she spent the entire time screaming or crying. But here, since she is progressing and her brain is healing from the surgery, she looks forward to the therapy. She also feels safe here, since they did not give her a "shot" when we arrived she feels like she can trust these people not to hurt her. The staff here works in close conjuntion with MGH and the proton center, so that they coordinate things like blood draws so as not to continually traumatize the kids.

My parents came up this weekend with Colby. Hannah was so excited for their arrival, to show them her new "tricks". She wanted to show them how she could walk by herself with the walker, stand by herself for a bit, and sit up by herself on her bed. She in fact sits up and can swing her legs off the side of the bed so well that I have to remind her to wait for me to come and help so that she doesn't try to actually jump down off the bed. She is getting stonger each day. Her leg cramps have been calmed a bit by a new drug she is on. The drug is actually an anti-anxiety drug, and seems to calm her quite a bit while relieving the continual pain she is in with her legs. She can concentrate more on her rehab work, and can spend quite a bit of the day pain free. She still awakens during the night with cramping, and spends about an hour or more calming down and trying to get rid of the cramps. We have watched some interesting shows lately at 3am, which no one would normally let their children watch. Even I am learning some new things! We still wish they could find the source of the leg cramps so that they could work on "curing them", but for now at least this drug provides her some much needed relief.

Today Hannah went for an MRI (she calls them her FBI's). Together with her CT scan from last week the doctors will prepare her proton beam. They accessed her mediport today for the first time, and while it was scary for her, it was so much better than an IV, which she is so scared of. This port is pretty amazing. Using numbing cream, Hannah really doesn't feel anything as they stick a needle in. The port was inserted at Stony Brook, and is under the skin on her upper chest area onthe left hand side. She is so thin that you can see it, but not unless you know it's there. The port has a tube that is inserted into the subclavian artery so that it can be used to draw blood, and also for IV's (for anesthesia) and chemo drugs. As we start radiation and chemo, the doctors will access (insert a needle) into the port and leave it accessed for the week, so that she doesn't have to be stuck over and over each day. They will pull it on Friday, so the port is free then for the weekend. She wasn't happy with it today, but it wasn't because of the pain, as much as it was the fear of using it for the first time.

Hannah also had an audiology test today to determine her baseline hearing. The hearing is at risk from the radiation, but her chances are much much better with the proton radiation than with the standard photon radiation that she won't lose her hearing. They are able to better contain the radiation so that her hearing is less affected with the proton beam, another reason we chose proton therapy. We still have to go for her neuro baseline, to determine her cognitive abilities, and then we will be complete with her planning phase of this. Her radiation (and possibly chemo) begin on Thursday. Hannah is one of 6 children on therapy right now that will receive anesthesia with the treatment. She has to have anesthesia with the first 13 treatments, since they will be targeting her spine and entire brain and take over an hour. During that time she has to remain very still, so anesthesia is needed. After the first 13 treatments, the last 17 will target her "boost" area only, which is the area of the tumor only. This area will receive a higher dose of radiation, but the treatment is only about 30 minutes long. Hopefully she won't have to have anesthesia for these, but that is yet to be determined. Hannah is the oldest of the 6 patients with anesthesia, which is so hard to believe at 7 years old. She is scheduled for a 12pm timeslot, the last of the day since all the other children are younger. Unfortunately this means she can't eat or drink anything from midnight on the night before, which may not seem like a big deal until you think about not feeding your child anything until after lunch each day for three weeks.

While things continue to progress, we learn new things also each day. As you would like to think that from here it just gets better, what you really learn is that you just enter a new phase. This new phase could include many other new side effects like nausea, vomitting, rashes, loss of hair, and a host of other unpleasant things. This is just the radiation. The chemo also has it's own effects. This round of chemo Hannah will receive something called is vincristine, and is only a shot, not the iv chemo that she will receive when we get back to Long Island. That is whole other ordeal. What we are learning is that you take each day as it comes, and celebrate the accomplishments and deal with the new challenges. As long as there continue to be accomplishments, it is a bit easier to deal with the other things that come our way.

Our love and prayers back to all of you,

Kim and Dave