I was going to surprise you all with the good news but I was too slow and those on-the-ball (no pun intended) Randolph-Macon College Field Hockey Lady Jackets beat me to it.The Friends of Jaclyn, an organization that matches up young girls (with health issues) and female collegiate teams, orchestrated a connection between Charlotte and the field hockey team at R-MC and they’ve already started signing the guestbook. This should be very exciting since I never got much of an opportunity to watch them play when I was teaching there. Thanks to Coach Carper and the whole field hockey team. Here’s their website if you want to stay updated throughout the season:
On to other news both good and bad. The good news is that as horrible a two week stint as we had about two months ago where we were losing about one CB child a day, lately, we are seeing a rash of wonderful stories including Megan Blake’s final treatments, Reese’s continued recovery, and Nile Price’s AMAZING defeat of sickle cell! (seems he has picked up his bone marrow donor’s peanut allergy but, as he put it, it’s a good trade!).
Maddie Mingloski, possibly the second most adorable little girl in the world (she's tied with about 1000 others), has entered Long Term Maintenance (which is very good) Here’s her site.
Yet, there are always those stories with which I’d rather not burden everyone but these families need your support/positive energy probably as much as any of us. Here’s just a small list of children who have recently gone on to the next part of the journey. The stories can be rough but I know the families sincerely appreciate being on people’s minds.
Liam Riley: http://www.caringbridge.org/visit/liamreilly
Owen Lea: http://www.caringbridge.org/visit/owenlea
Anika Wilke: http://www.caringbridge.org/visit/anikawilke
We keep plugging along and fighting the fight but it always comes back to, “this should not be happening to these children.”
Last but not least, I had a dream last night that CJ was getting treatment in a super posh high-rise office with a huge bowling alley and tons of other very cool things to do! I’ll bet there was a spa for the grownups somewhere. Need to find that place. It’s a very happy place. :-)
Did we mention that I will be flying down to Houston Saturday night! Did we also mention that we’ll all be flying home, AS A FAMILY, on Tuesday? How strange will THAT be? And cool.
Gotta go take a nap!
First of all, a moment of silence for Senator Ted Kennedy. Regardless of your politics, he was an amazing individual who has done great things for this country. His leadership will be missed.Another early morning, another walk to the proton center. We were finished by about 10:30 and headed over to MDA main hospital for our check in with Dr. Wolff. We reviewed the protocol and made a few "tweaks" based on our traveling schedule. He is going to keep her on the topotecan until Wednesday of next week and then we can jump into the new drugs the following week at home (hopefully). We are still trying to firm up a clinic time with Dr. Khan and the folks at MCV but I am hoping that will be resolved by Friday.I asked a lot of questions to Dr. Wolff today about the chemo. Does each drug do the same type of thing? Do they do different things to the tumor? How will we know when to stop chemo? How do we know which drugs are actually working? Etc. The short answer (without taking a course in basic oncology and getting a degree from medical school) is that cells have what is called apoptosis, or cell death. Every cell in your body has a certain life cycle and potential for apoptosis. Some cells such as your white blood cells have a very short lifespan in the body (which is why when chemo stops new cell growth, your counts drop because your body isn't making any new ones. You get neutropenic...and then you run a bigger risk of getting sick). Other types of cells have longer lifespans. Cancer cells have their own cycles of apoptosis and there can be multiple types of cancer cells within a particular tumor. The trick is to find the agent that kills the cell at just the right particular stage of each type of cancer cell. There's the tricky part. We already know that some of the drugs we were using did not do the trick. We are trying this new regime of drugs and will see what it does. That, combined with the results of the MRI, will dictate the course of treatment for the future. Unfortunately, sometimes it's difficult to tell what is really, truly working but the morphoproteomics analysis is supposed to help with that. That, of course, is the basis for her current protocol so that is promising. There are three reasons why we would stop chemo:1. The tumor is still growing or there is new growth2. The side effects of the chemo is detrimental to her health (usually blood counts too low)3. There is no sign of cancer/tumor cells for a particular period of time. This varies depending on the cancer and is basically determined by the history of previous patients with similar tumors and the likelihood of the cancer returning after chemo regimes of a particular length.So we could be on this chemo regimen for a long time. It is very dependent on the post-radiation MRI and the success of these new drugs. We shall see. At least the oral drugs are very managable and she seems to be tolerating them well. That is a positive in our favor.After the clinic, we dropped off the prescription for more topotecan and headed back to the house. We had some lunch and then Halle and her mom invited us to walk with them across Hermann Park and over to the contemporary art museum. The stroller brigade was ON! It was a good walk. Amy (Halle's mom) is a runner and is in MUCH better shape than me so we definitely went at a good pace. It helped that she had the jogging stroller too! The contemporary art museum was small (but FREE!). There were some very unusual exhibits. Most were three dimensional with mixed media and many also featured video or sound. Halle kept saying "I don't get it." Neither did we half the time. But some of it was really interesting. I think everyone's favorite was the Fundred Dollar Bill exhibit. This is a very interesting project going on all over the country and we contributed our own artistic "money" to the cause. For more information on the project, go to http://www.fundred.org After the museum, we zipped back to RMH and I needed a shower. The afternoon was spent with movies and dinner. Ronald McDonald stopped by to visit too but Charlotte wasn't too interested. So that's all the news to report. Not much in the way of action but one step closer to home!!Rachel
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