| School is out! |
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Hi All, Well it looks like "Summer" is finally here. The girls are so happy that school is finally done. WooHoo!!! Devon made Honor-roll again for the 3rd marking period & Paige is now ready for the 2nd grade (oh my babies are growing up). We are so proud of them and can't believe that another school year has passed by so quickly. The girls are starting to enjoy summer and their time off. They both signed up for our local swim team and they love it despite all the hard work. It is becoming quickly clear that Devon is our academic star and Paige is emerging as our sports star in swimming. We simply feel blessed for these little gifts and Thank God for every moment we are given with our children.
Today I was talking to a BT mom at CHOP and we both agreed that living has taken on a much different meaning for us after the diagnosis. Despite it being so incredibly hard at every moment, it is also very sweet when our kids achieve the smallest victory and reach a milestone. Strange how things work and how people don't appreciate what they have until it is gone. Well with that said, yes we were at CHOP today. Devon got a high fever last night and we spent most of the night in the ER at CHOP. Today she got her Chemo while at the hospital and came home in the afternoon. We were so glad they did not keep her 24 to 48hrs; like they normally do. They could not find the source of her fever however, since her counts were good and her port does not appear to be infected, they let her go. While we were there, we met with Devon's Neuro Oncologist now that we reached week 52 of her Vinblastine treatment. She extended Devon's chemo for another 6 months with MRI scans every three months, because her tumor continues to respond to the treatment. Devon was sad to hear the decision to extend, since she has been getting chemo for nearly 20 months strait for every week, but certainly understood the reason behind it. We just need to reach that level of stability at some point and ultimately that "unconditional cure". We are also excited to report that Devon may possibly participate in a Refined MRI clinical study. This new MRI method, as I understand it, promises more enhanced view of the tumor & it's physiology. This will allow her doctor to get a closer look and give us more useful information. Now all we have to do is understand exactly what is involved and what possible effects both positive and negative it may have and get her on the list. Depending on our findings, we will then schedule the scan for August. I will keep you posted of further developments and will post the date as soon as I have it. Got to run, the night owls are still up so got to put them to bed. Please continue to pray for Devon and all our BT kids and their families (Genna, Rosie, Lexie, Lilly, Brielle, Jake, Brook, Samantha, Joseph, Kira, Jenna, Terry, Raffie, Miguel, Sarah and so many many more). As always, thank you for checking on us, we love hearing from you. Banu
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