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Hi Everyone, Sorry I did not get a chance to update you after Devon's visit with her Neuro Oncologist. The tumor has shrunk by a millimeter or so in every direction opening some of her ventricles in her brain. We also compared this latest scan to her original scan in Oct '07 and the tumor is half its size compared to original and lost some of its luster; which means (possibly) that some of the bad cells are dying or stopping their activity. This is truly good news when we look back to where we started. I asked if the tumor will ever die or go away completely with continued treatment. The answer was NO, not likely to go away. According to her Neuro Onc. these type of low grade tumors tend to respond well to chemo initially. Over time, the response tends to slow down or stop. The goal is to reach stability; where tumor is no longer growing. However, it is unlikely for this low grade Juvenile Pylocitic Astrocytoma (JPA) to completely disappear. Devon is on her 34th week of Vinblastine (chemo) treatment. She will get a total of 52 weeks of this drug. If tumor continues to retract or stabilize, her doctor will continue with it for another six (6) months. Once chemo is done, we will start a period of Wait and Watch (WAW). This is a very difficult time. After 3 months of WAW if tumor shows no change, we go through another WAW. After 6 months if tumor still shows no activity, we formally reach something called "stability". Devon will be scanned every 3 months from that point on to make sure the tumor is "stable". Some of our friends have been stable for nearly 19 months but they still continue to get scanned every 3 months. Actually Devon's Neuro Onc. mentioned that Devon most likely will get scanned every quarter for the rest of her life. The stress of these scans are so intense and devastating to the families if tumor resumes activity. If it does not, we live (or simply exist) between scan dates... waiting for the other shoe to drop; hoping it never does until that "unconditional cure" is found. If tumor does resume activity after a period of stability, then the kids are put on another, more intense, chemo therapy. This type tends to be harder on them. Then the cycle starts all over again... and I don't want to think about what comes next at this point. Let's just take it one step at a time and enjoy our little victory here. Now to cheer you up a little. Devon recently cut her hair (what little she had after her first chemo) and donated it to "Locks of Love" for her friend Ellie from our treatment center. Ellie has Leukemia and they tend to get a much harsher combo and dose of chemo. Therefore, they all tend to loose their hair. We are fortunate from that perspective that the type of chemo BT children get causes hair loss on some children but not all. Generally darker hair tends to stay on (not sure why). Devon's new hair due looks so cute. She actually looks so much older (ugh). I will try to upload a picture in the next few weeks if I figure out how to do it. Devon had such a great time at Nova's swim & diving meet few weeks ago. At the end of the races against Syracuse (which our girl's team won), Devon and Paige got to go into the swimming pool and swim with some of their sisters. They had a great time. Also we got the results of our fundraising activity and it looks like Team Devon raised approximately $35,000 last year towards Low Grade tumor research. The reason why I say approximately is because there are some United Way contributions that may not have been designated towards Team Devon (this is no big deal since all goes to PLGA). We also added PLGA foundation to the greater Philadelphia area United Way pick list. So as you contribute to United Way through your employer you can now pick the PLGA as a organization you want to direct your funds to. If you are not in our area, then you can write the PLGA in on your ballot or get 50 people in your office to do so and they will add PLGA to your chapter as well. Now that we are a fundraising machine, friends have asked if we are doing another bowling fundraiser. This event was so stressful, I am not sure we can continue to make it an annual event however, there are two things planned for '09. One in the spring/early summer and one in the fall. My neighbor who owns Sabrina's cafe in Philadelphia approached me yesterday to have a fundraiser in the spring. For one day, Sabrina's Cafe will donate proceeds from a special dish made in Devon's honor & titled something cute to the PLGA foundation through Team Devon. Apparently, they did this for Alex's Lemonade day and were able to raise a lot of money and awareness through patrons and media coverage. So we are going to try and do the same for Team Devon and the PLGA foundation. If you get a chance look up Sabrina's Cafe on the web. They are famous for their specialty pancakes and wonderful meals. We are very lucky to have such wonderful neighbors all around us. Stay tuned, you may be going out to breakfast, lunch or dinner at Sabrina's Cafe in late spring. We are also doing the Philadelphia Dragon boat even this year and those of you who can not come to Philadelphia for a great meal can contribute by sponsoring me or Sean during the Dragon Boat event in October. Stay tuned. As soon as we get the details worked out, we will post events on our "event's page". As always, thank you for listening/reading and your continued support. We all need your loving care, your positive energy and your prayers. They do work! Never give up HOPE that one day there will be an unconditional "CURE" for our kids too... but we have to work on it together. Please pray not only for Devon but also for Genna, Rosie, Lilly, Ellie, Kira, Caroline, Heather, Lexi, Samantha, Luke (who is having surgery again soon), Brielle, Westin, Terrie, Brook and many many other of our BT children and their families. Thank you, Banu |
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