Wednesday, March 14

Hello again from Boston. Today is Wednesday, and Hannah had treatment #5, only 25 more to go. We're starting to see some of the effects of the radiation. Her appetite is dimished already. This is exacerbated by the fact that she can not eat in the morning due to the anesthesia. Our treatments normally begin between 11am and 12pm so by the time we're done and Hannah is calmed down enough, it's 2 or 3 in the afternoon. She hasn't eaten all day, but still doesn't have an interest in eating. The doctors say she is dehydrated, but her weight is stable, so that is good. So for now we're trying to find things she is interested in eating and drinking, even if that means french fries and soda for dinner. At this point it's all about the calories.

Her rehab work continues to go well. She can stand now on her own for a few moments, and she loves to show that off to everyone. They have been working with her on the regular walker, without the arm supports, and she is doing great on it, but she's not quite ready to do it on her own. She likes to show me how she can just pop up off the bed onto her feet. I am constantly telling her now to "be safe" and "wait for me". She just wants to do it all herself, which is wonderful, but safety is key also. I just envision her trying to pop off the bed while I'm down the hall getting the nurse, and I return to find her flat on the floor. We visited her oncologist today after beam treatment, anticipating the start of her chemotherapy. We were a bit surprised to hear they would like to wait to begin chemo, to allow Hannah to continue to get stronger through rehab and radiation. As soon as they begin the chemo, that begins to compromise her body in many, many other ways, and would definitely impede her progress with rehab and getting stronger. So, as this point they are holding off on beginning the chemotherapy. There has been no evidence to show that beginning the chemo within the first 6 weeks (while getting radiation) is more advantageous than waiting. It's almost a relief in a way, since we have been reading about the chemo drug she would have received and it's very strong and scary stuff.

Colby came up last night with Dave to celebrate her birthday. Colby turned 10 today. We celebrated last night with cake and presents at the hospital. This morning Colby came to join Hannah for her therapy, which Hannah loves. She is so happy when her sister is here visiting. Then we all went over to the proton center for treatment, and Colby got to see the proton beam room, which was in her words, "scary". It's just so big, it's overwhelming. Unfortunately, Hannah still wakes up from the anesthesia in a very agitated state. We see some other kids walking out eating and talking after their treatments with anesthesia, but we were told today that they are on an entirely different treatment and have a completely different diagnosis. Hannah is getting a lot of radiation.

We're awaiting the tooth fairy tonight. Today the anesthesiologist pulled Hannah's loose front tooth, since it had become pretty loose, and therefore a danger during any anesthesia. Hannah didn't seem to care, and has been quite happy with her new appearance. She wrote a note to the tooth fairy that she was in the hospital, but she told me that she wasn't putting anything in the note about what she would like to receive from the fairy, because then you are certain not to get it.

Many people have asked about where to send cards or things for Hannah, so I'll post it here. It's best to send anything directly to our home address, and Dave will make sure it gets up to Hannah. She loves hearing from everyone, and I always read her the comments on this blog. She really gets a kick out of everyone commenting and saying hi! She has her own area on the blog, but she's not quite ready for posting just yet.

My parents left today and are back in Indiana. It was such a tremendous help having them here, I can't even put into words how much they have helped us through all of this, not only with emotional support, but just by giving us the peace of mind knowing that Colby was home and where she needed to be, with everything in order. Thanks so much to mom and dad, we love you!

Thanks to you all for your ongoing support and your comments. I think Hannah needs to feel that connection with her friends and family, since being here you feel somewhat detached from your old life. It makes her happy to know that her friends are still there, and she has that bond with them. I know we need it too! If you would like to take a look at the Spaulding Rehabilitation hospital where we are, you can take a virtual tour at this link, it's amazing how true to life the tour is, it gives you a good idea about accomodations and life here. You can click here to see the tour.


xoxo,
Kim and Dave.....and Hannah