| January 2005, A quick update on Madalin. A previous update was lost so it has been well over a year since the last update. In the last year we tried another attempt at weaning her off the acth and she relapsed again. Madalin is scheduled for another spinal tap in Springfield next week so we can decide what step to take next. Recently we made some changes to her meds. She is still on the 6mp (chemo) but we took her off the methotrexate (chemo) and added cellcept which is actually an anti-rejection drug for transplant patients. It will take several months before we see the full effect of the cellcept. Her doctors are pushing to get her off the acth because it is causing problems. The left venticle of her heart has thickend, she has developed osteopenia (weak bones), and her liver is being affected. I understand the docs point in wanting to wean her but Madalin spends a good majority of her day crying, screaming, and having rage attacks when she is low on the acth. Her trazadone was raised to help combat the effects and to help her sleep better at night but we still have many night of chasing her around at 4 am as she screams, flails, hits, and kicks. Risperdal (mood stabilizer) was also added but has not given her much relief. With each wean she loses skills and knowledge she had previously mastered. Recently she had been attempting to write the letters in her name but is no longer able to since the last relapse. I was amazed since she had just recently learned the alphabet. She only recognized the letters in her name and was not sure which letter is which or the order they should be in but she was at least realizing these letters spell my name (Maddy). Now, after this last relapse, she lost that ability and can only recognize the letter M occasionaly. Her speech is almost unintelligable again, her eyes have been jiggling/dancing for the last month, the tremors are back, she is having a hard time drinking out of a cup so I had to buy sippy cups again or she will use straws. Madalin attends a special education preschool and will remain in her school through kindergarten. We will consider mainstreaming her in first grade, at her home school, after I learn more about their program. For now, there is no way I could send her into a sea of kids, she would be lost.. Plus, her immune system is compromised and there are too many germs with so many kids. For awhile now, reality has been sinking in. I used to think she was little and had plently of time to catch up with her peers. Over the years, I have watched her slip farther and farther behind. She scores very low on most of the testing she has, coming in between the 7th and 50th percentile. I have serious doubts that she will ever catch up and wonder if she will ever learn to read and write. Her teacher at school had mentioned books on tape and we are trying to teach her to use the computer so she could maybe type if she is unable to write. Since she loses more ground with each wean and has to relearn what she already mastered, she is frustrated, irritated and doesn't like to even attempt most learning activities. Madalin is now five and is not much different from a 2 or 3 year old. Progress is slow, usually one step forward, two steps back. Most things a typical five year old has mastered are so far out of her reach it leads me to wonder where we will be in 5, 10, 20 years? |
| June 2006 The last year and a half has brought many changes. Madalin is doing so well right now. We tried a new treatment, pulsing her with a high dose of Decadron (oral steroid) monthly in an effort to wean her off the acth. We were able to get down to .29 cc from .4 every other day but the treatment was very hard on her. Her pediatrician told me that Decodron can cause some people to behave as if they were schizophrenic. Madalin had wild mood swings and felt horrible for the three days of the pulse. It would take her a couple of days after the pulse to recover each month before she was back to her normal smiling self. My husband and I have since made the decision to let her have some time to just be a little girl. No treatments, (except the acth) no unnecessary tests, no yo-yoing on the acth, just leave her be. We are having a wonderful summer because she is at her best. The last few months of school she made some remarkable progress, I believe, becasue she was feeling well and able to concentrate more. I am happy to announce Maddy can write most of the letters of the alphabet, remebers many of their sounds and is learning some very basic addition skills. Since she was able to make so much progress, we have decided she is ready to move from her special education school to a self-contained classroom at her sister's school. Maddy is very excited about the move. She will be mainstreamed for art, gym, music, computer lab, and some science and social studied projects. I of course, am nervous about the move. I hope she can manage the lunch line and makes friends to play with at recess. All in all, these are well. I have noticed though, since her last relapse, which was minor, she can't control her emotions as well. We still have a lot of temper tantrums and crying but nothing like the rage attacks we use to see. Most of her meltdowns are a result of her sister having many more friends to play with than she does. Katie is often invited places and Madalin is left behind. I am really hoping she is able to meet some local kids to play with when she starts school. |
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