Destiny's Neuroblastoma Fundraiser

DESTINY UPDATE (please read and feel free to share):

Scans all came back great. Both Geisinger and CHOP docs say this is the best we could have hoped for up to this point. Woop!

Now the extra-crazy part: they want to do a double stem cell infusion. This has only been in trials from 2007 until JUST now, but I had a one-on-one meeting with the doctor who actually invented and ran the study. Turns out he is also largely responsible for discovering the use of stem cell treatment as opposed to bone marrow transplant. CHOP has some amazing docs working there.

The double infusion would mean a month + 2 weeks "break" where she has to be within 40 minutes of CHOP (my house not close enough for emergencies so Mum-Mum, Stacey, Des and I will have to stay at Ronald McDonald House in University City) + another month. That means Mum-Mum is basically going to be in Philly from June 16th til roughly August 30th, and she HATES cities. Stacey and I will be down there as much as humanly possible to give Mum-Mum breaks and send her back to my house for rest when we and she can. This also means that we have to find multiple people ASAP to help Pop-Pop at home (he works 6 days a week) and the other two grandkids that they basically rescued from neglect.

I spent almost 6 hours yesterday learning about this chemo and stem cell transfusion from nurses and docs. They didn't sugarcoat anything. The treatment will be HELL. First 3 days is a chemo she never had before that will literally melt your skin if left on; she has to shower every 6 hours, day and night, she can't wear any kinds of bracelets, stickers, lip balm, etc that would hold the poison on her skin. Then comes the pukey chemo for 3 days. Then she has a day of "rest" (pfffffffffft) before the stem cells are put in. That is where the real hell starts as she will have ZERO immune system, feel extremely sick, and develop horrible mouth, esophagus, and tummy sores. She will not be eating; no matter how strong the kid, they just don't eat and need IV nutrition. I was told over and over that weeks 2 and 3 out of the 4 will be the hardest thing she has gone through yet (and here I was thinking we were nearing the home stretch). Doing the new second transfusion in a row will GREATLY increase the sores, and again she'll feel even worse.

Each treatment comes with a 3% chance of infection that would cause multiple organ failure and lead to death. 3/100 kids die doing this. I keep telling myself that she wasn't even supposed to make it this far. Doesn't help. Her scans are all so clean of cancer, but it just blows that this neuroblastoma is so tricky and likes to "hide" so we need to keep fighting hard as hell. She will also not be allowed in ANY public enclosed space for months AFTER the treatments.

Des will spend her birthday in horrible pain and discomfort. She will miss the entire summer (her fav time because she loves swimming and playing at the park). She will miss school again and may have to be held back in 1st grade for another year (2 years behind).

Then she STILL has radiation and immunotherapy after this. We're talking best-case-scenario that she is done by November. This poor kid.

On a lighter note, she did get accepted by Make-A-Wish!!!!! Disney here we come (well Mum-Mum, Pop-Pop and the two other kids as Stacey and I don't get to go)! But again, this won't happen 'til 2016. I told Mum-Mum that it will be better in the winter anyhow as they'll get a break from the cold.

I know many of you have already donated and are tapped out, but if you feel like doing anything, please contribute here. This is a LONG haul. The family is in more need than ever now that they have to do even more time at CHOP and have both other kids watched. The mortgage and utility bills have piled up again, and we are in need of help with travel, food, and lodging.


MY ORIGINAL WRITE-UP ON DESTINY:

This is Destiny. She has stage 4 neuroblastoma, a very rare type of cancer. There is a large mass in her abdomen pressing against vital organs and is wrapped around major veins and arteries, as well as in most of her bones. We found out on New Year’s Day and since she has been receiving treatment at Geisinger Medical Center in Danville and CHOP in Philadelphia. Today she braved general anesthesia in order to have a picc line put in and have her stem cells harvested for later use to restore her immune system after her risky surgery and extremely heavy 5th round of chemotherapy (CHOP tech is amazing).

Since being diagnosed, we have been very up-front with Destiny about what would be happening to her. The second we told her she would be losing her hair, her immediate response was to have Aunt Stacey cut it all off and donate it to another little girl who needed it; her compassion outweighs concern for herself. On a similar note, she had been wracked with pain, had very little muscle, and had to work her way up to using a walker to try and get stronger. As soon as she got confident with it she volunteered to teach the 2-year-old a few rooms down how to use her own walker. The parents of the other little girl were unsuccessful in their own attempts, but somehow Destiny made a connection and was able to get her up and moving. After taking a cell phone video of the result, the parents sought us out and thanked our little heroine endlessly. And her compassion does not stop there: she has me carry her around waiting rooms, play rooms, hallways, and so on just pointing in the direction she wants to go (let’s face it… she has me wrapped around her finger) and asks to meet every other “sick kid” to see how they are doing. For example, today we met a bald 4-year-old girl who was getting her port removed and Destiny told her she looked “pretty” and “hopes she gets better soon”. Five steps later she saw an infant and struck up a conversation with the parents, not once talking about her own situation but rather focusing on theirs. In the elevator a young girl had a baseball-sized tumor in her face and Des just said “I hope they make it not hurt anymore”. Selfless.

While Pop-Pop holds down the fort at home with the other kids, Mum-Mum, her grandmother and legal guardian, has been a rock; she knows exactly how to handle the situation, walking that fine line between strict protector and mushy snuggle-buddy. Mum-Mum never leaves her side unless she takes a few minutes to check on the rest of the family (or when Destiny repeatedly FaceTimes me, often hanging up and calling again just to mess with me). As you can probably tell, the kid is also a little firecracker, often being very blunt with the nurses (“Go slow with that needle. Let me show you how to do it!”), and even doing a little bit of picking on Aunt Stacey (she often tells her that her feet smell even though they don’t and makes Stacey change her socks). She now loves to do her own blood draws and flushing from her port and aspires to be a “night nurse” when she grows up so she can give back.

Destiny has taught me so much about life in such a short amount of time. She simply brings out the best in me and others around her. Her balance of toughness and softy is just right, and it exactly what I think will carry her through this. I’ll tell you straight up that it is what is carrying me; I can only aspire to have her resolve and character. I am so blessed to have her as my niece and a best friend.
I haven't slept for over 24 hours or I could go on forever.

Honestly, the family is in need of financial support as they currently do not have the means right now to keep up with bills, supplies, travel, lodging, groceries and the like. Thanks all. Much love!