Thursday, November 13, 2003
Kami got her second Lionheart certificate congratulating her for completing her second round of radiation. She completed five weeks of whole brain radiation. With the use of steroids we were able to get her through it relatively comfortably. Her symptoms are mainly stable with some further loss of neurological functions. Her hearing seems to be getting a little worse and she is very shaky. We are to expect things to get even worse in the next few weeks until the effects of radiation kick in and then hope they get better. To help ride out this difficult time we will increase steroids to relieve some of the pressure and swelling due to radiation.
The timing was right for Kami to finally get her electric wheelchair as it is more difficult for her to keep her balance now. She loves using her new chair as it gives her much more independence.
We will wait a few weeks until we start another round of chemo. And will get another MRI in about a month.
The book "If I get to five" by Dr. Epstein might be something to purchase for the Holidays. Dr. Epstein started the INN at Beth Israel Hospital in New York where Kami first had surgery. Reading the book gives a very personal window into what Kami is going through. It also gives much inspiration and hope.
Kami continues to be the bravest girl on earth. We must continue to be brave as well and continue the fight. We thank all of you for giving us support. We wish you all a wonderful Thanksgiving season and send blessings to you and your loved ones.
With Love,
The Nguyen Family
Recovery
November went by quickly. Kami loved having her electric wheelchair at school and we learned how to go around town with it as well. Her symptoms had gotten worse toward the end of radiation but after a few weeks, they started getting better. Even though everything was so uncertain at this point, having her symptoms get a little better was a huge relief. We didn’t have to think about her loosing her hearing completely. We didn’t have to go down that whole scary road. Radiation seemed to have worked.
During November we had much more freedom since we didn’t have to go to radiation everyday. It was a relatively happy time and we were looking forward to a good holiday season. We went shopping a lot and of course ate out a lot too. The mall was a very good place to go with the van and the wheelchair, so we went there a lot. We listened to our books on tape while we were out and about and generally had a very good time. Kami’s two favorite books on tape were Trickster’s Choice by Tamora Pierce, and Zazoo by Richard Mosher. Kami had very sophisticated taste for a seven year old.
We thought Kami’s hearing was getting better. We had a hearing test done, but no luck, she still had no hearing in her right ear. We asked about hearing aids, but since the problem was all the way at the root, in her brain stem nerve, there was nothing that could be done. We just had to accommodate her by talking to her on the left side.
Since things were going relatively well again, we refitted her body brace and gave that a try again. We had to get all new shirts again that would be comfortable under the brace. With Kami’s ever changing size, I was constantly getting her new clothes. Luckily this was not a problem for Kami because she loved to go shopping. Kami was supposed to wear an undershirt under the brace so she wouldn’t get sores from it, and then wear her regular clothes over the brace. The biggest problem was that Kami couldn’t wear the brace all day yet, and I would have to take it off her when she got tired which meant we would have to take off her clothes too. In order to get clothes over that thing, they had to be gigantic, so we just decided to wear a regular shirt under the brace and that was it. She looked like she was wearing some kind of armor, it actually looked great. Kami wore the brace in school and did pretty well with it. She wore it for a half hour or an hour at a time, then I would take it off her and try it again later.
We had a very nice Thanksgiving that year at John and Cynthia’s. Delores, John’s mother was there again which was nice. Delores was in a wheelchair, but Kami was able to walk around the house without one. It was so much fun to have Kami walking around and participating in games and dinner. The year before she couldn’t walk and didn’t interact with people very much. This year we were thankful Kami was doing as well as she was and prayed for more recovery.
November 2003
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