| Quick Little Update |
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Hi Everyone, I can't believe its been over a month since my last update. Time seams to slip away sometimes. Especially when you are juggling so many different things at the same time. Devon has been doing good overall. She continues to get her weekly dose of chemo although they tend to adjust her dose up and down based on her counts. Recently she had a sinus infection which required an antibiotic and the antibiotic tends to drop her counts like a lead weight. Now we are waiting and hoping that she is above a certain level so that she can get her chemo next week. She also continues to experience lower back pain the day after chemo. However, the intensity of the pain seams a lot lower... or she is simply starting to get used to the pain. I wonder what chemo is doing to our little girl and all the other little children? I just hope it is killing the darn brain tumor without causing too much damage to our kids. Talking about the tumor, it is almost time to schedule another MRI and that always puts a knot in my stomach as we wait for the dreaded day. Maybe sometime after Spring Break, which the kids are so looking forward to. Devon made Honor Roll again this marking period. Strait A's and her teacher wrote this incredible note that my mom wanted to photo copy to show all her little old lady friends. We are so proud of her and our little Paige. She too has made good progress and continues to be a social butterfly in her own way. The only thing that has still not slowed down is Devon's weight gain, which is a symptom of her BT infeltrating the Hypothalamus gland. But given the bigger picture we are not too concerned. Although Devon is getting very self conscious and continues to call herself "FAT". We are trying to figure out how to help her. Now that spring is here, we are all hoping it will give us the opportunity to be more active. In general Devon eats a well balanced diet therefore, I am not sure if cutting back on calories is the right thing to do with a child already under so much stress. I realize our stress in dealing with this illness is much more manageable nowthan it was nearly a year and a half ago. I got a phone call few evenings ago from a mom in Canada, who's five year old son was diagnosed in January '09 with two low grade JPA's in his brain and little sprouts in his spine. They were devastated! She being in so much pain & agony, I almost re-lived everything with her as we cried over the phone together. One minute their beautiful son was "normal" and the next minute their lives had turned upside down. I can not tell you how profoundly I felt her pain, how glad I was that she had found me and yet I felt so helpless in being able to truly help her. All I wanted to do was give her a big hug and tell her that things get more manageable. God has a way. Instead all I could do was listen and give her the link to our LGGK yahoo chat group. A place full of parents suffering the same thing and help each other through shared experiences and learned knowledge. That and friendships from that organization is what got me through. The pain does getter buried deeper and life seams to go on but BT is always still there and I realize even though we may be on what appears to be a "stable" course... We are still on that slippery slope, no real way to go back up but a sure way that we could fall any minute. Life just does not seam fair. So we can't give up on the cure. If you have not done so this year, please go and donate to the PLGA foundation in the name of Team Devon. We will keep you posted as we finalize plans for our next fundraiser. As always, this short note turned into a much longer one. Thank you for listening/reading. As always please pray, not only for Devon but all our BT children and their families (Genna, Rosie, Kira, Lilly, James, Zack, Terry, Brielle, Lexi, Sarah, Luke, Brook and many many more.) Banu |
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