| 4th Grade & Dragon Boat |
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Hi Everyone, The girls have started school once again and Devon is very excited to be in 4th grade this year. Can you believe she already had several tests/quizzes and scored 100 in 5 out of 6? She loves school and loves learning. Paige is in second grade this year and she too loves her teacher and has a more social way of learning :). It's amazing how quickly time passes. The girls had a very busy and fun summer. They were on the local swimming team GO WC SHARKS & NOVA! of course, they attended Ronald McDonald camp in the Pocono's for a week (ovenight yea!!!) & enjoyed Devon's Make-A-Wish Nickelodeon cruise on the Royal Caribbean... however it all went by so quickly. We are slowly settling into fall as we welcome a new member to our family shortly. NO! We are not having a baby (get that thought out of your head folks) but we are adopting a little dog from the SPCA in Lindenwald, NJ. Little mutt that looks so much like Murphy. He is only 8 weeks old and has a dogie cold so we will not be able to bring him home until next week but the girls are going crazy getting ready for our pup. We got a crate, dog food, treats and many many toys already. The hard part is finding a name! You can imagine what the dinner conversation is like at our table on a daily basis now... the dog seams to be on their minds 24/7 when suddenly someone just shouts out a name while we are cooking dinner or doing homework or when ever. So you can help by leaving us suggestions on what to name our pup. I am going to try and upload a picture (wish me luck!) Anyway on a more serious note, as we approache the second anniversary of Devon's diagnosis, we are both happy and sad at the same time. Devon is almost a two year survivor of this dreaded illness now. Despite the challenges she faces everyday with the vision loss, the weekly chemo treatments she endures, the monthly shots she receives, the fevers that send us to the ER and the constant fear of MRI results or what is happening in between, she is still a very happy little girl and we feel so blessed as a family. We have many reasons for that. Devon compensates very well for her impairment , the chemo is manageable for now, the treatments have become nearly routine, folks at CHOP are like friends who we miss when we don't see them, BT families are part of our inner circle, and LIFE disguisingly appears normal between MRI's. So we are blessed and fortunate because so many in our community today are struggling with much more difficult and severe challenges or have paid the ultimate price as a result of this monster or its treatment. Just when I become a little complacent and don't want to go on updating this blog or raising funds for the cure and simply want to forget, I am quickly reminded that we are still in this world and will be forever unless we find that unconditional cure. Just last Sunday we ended up in the ER with a high fever at 3pm. Shortly after we arrived, they tried accessing her port (a needle to her chest) three times unsuccessfully and finally around 10pm they gave up and stuck her hand to put an IV to take blood & give her fluids. We left at 1:30am and she was exhausted. I felt pain in my hands where I had dug my nails deep into my palms feeling helpless as I saw my kid in pain. The next day we still had to take her to the clinic where once again they accessed her port. The good news is that they did not find an infection and sent her home after giving her antibiotics. Although, this is a very small incident given the grand scheme of things, it is just part of the BT life that continues to remind us that we are always on that slippery slope. Unless we find that unconditional cure, we have no chance of getting off. So this year, I am back on the Dragon Boat Team raising funds for the PLGA foundation and I need your help. I know this year has been very difficult, from an economic standpoint, for everyone but Devon is still here only because of available technology and treatment she received so far that are made available through research & research grants. As a mother, I want that unconditional cure for my child and all our BT children and need to fight hard to make it happen. So please please please, sponsor me in this dragon boat event by sending your donation to the PLGA foundation supporting "Team Devon Dragon Boat Event"... you can either use the link on our page or just go on their web page www.fightplga.org to make your donation. I remember it like... it was yesterday in October of 2007 and only 6 days after my second Dragon Boat event, we took Devon to the eye doctor on Wed Oct 10th thinking she had a lazy eye. How naive! only to find out on Friday October 12th at 2:15pm at CHOP KoP clinic that it was something life shattering and would change us forever. Therefore, the Dragon boat event has a great significance and I want to turn that terrible day into something positive... a day where we raise so much money that we can continue to sponsor the researchers who are working for better treatment options and eventually the ultimate cure. We were so happy to participate in the Arterial MRI study in during our August MRI. Although the results of the MRI did not help "Devon" directly because we did not get to see them, we know that it will help her and many kids as the researching doctor makes progress. Sorry to go on so long this time... but it had to be said. So PLEASE I encourage you to go on and donate to PLGA this year. I have to run because they are up and demanding food this morning... they remind me of newly hatched birds :)... In the meantime pls keep Devon and many of our BT children and their families in your thoughts and prayers (Genna, Rosie, Lilly, Kira, Lexie, Samantha, Kyle, Jenna, Jaclyn, Luke, Zack, Brook, Brianna, Terry, Emily, Emma, Raffi, Joe, Eddie and so many many more) . Our next MRI is in November so I will most likely update you shortly before. In the meantime, be safe & enjoy the Fall.
As always, Thanks for listening and donating. Banu |
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