I think the tone of the words that end up in these blog posts have almost everything to do with time of day I decide to sit down and write. It's Friday afternoon right now, I'm fired up and ready to go. Yesterday was an absolutely exhausting day at the tail end of a week that often seems to crawl by at times. I'm just not a big fan of Thursdays and have been sleep deprived. Quality sleep works minor miracles and oh what anything over 6 hours solid can do for the mind, body, and soul. Much more positive things to say today as a result.
Day 94 marks the end of the 8 week Consolidation phase. Yeah! Ellie received her final shot of Vincristine this morning and got a blood transfusion to raise her red blood cell count for the weekend (often its almost like an instant adrenaline boost). Since she has not had any drugs that would suppress her immune system in a little over a week, her body should be elevating back to really good blood counts by early next week. This means her energy will be great and we may even be able to take her out of the house somewhere. She gleefully took a bright yellow hat out of the fun box that "Joe" brings around the Bass center every now and a again while kids are getting their chemo (Joe is a kind hearted older man who roams the hallways at LPCH as a volunteer on a daily basis just checking in with folks and making sure everyone is doing ok). Seriously, this thing is like a light bulb. But Ellie is so excited to announce upon her arrival home the new things she has gotten while at the hospital that you would think she'd just been to Disneyland. Even though she has been neutropenic for the past 3 weeks, she has been smiling the whole time. And when she smiles, Polly and I smile. Its infectious really. Goes back to what I was saying a while ago about her teaching us. Years from now when I tell her about how she battled so hard throughout this fight to get the upper hand, I will always remind her of the smile she possesses and how our feelings of hope raise exponentially every time she showed us the way.
Our next 8 week phase is called Interim Maintenance (IM) which will start next week. It has its good parts and not so fun parts as they all do. The good part is that the amount of chemo she gets is a lot lighter in terms of day to day over the next 8 weeks. The not so fun part being that one of the drugs is given in such a high dose that it requires in-patient hospital stays for observation purposes at weeks 1, 3, 5, and 7. So, if her blood counts come up by this coming Wednesday, she will be admitted next Friday for about 3 days for her first stay and IM officially begins. The significance of this IM start date is that per our ALL protocol, all of Ellie's treatment will officially end two years this day....which would be October of 2013 (about 466 days in all). We are told we have our hardest 8 weeks of all coming up after IM is over (especially it being in the middle of the winter) so any sort of easier schedule between now and then will be welcomed with open arms.
We had to say goodbye to our Nurse Practitioner, Erika, today because she is leaving Stanford and moving with her family out of state. Leukemia protocols are fairly straight forward in terms of what & when things need to be done so that if you are on schedule as Ellie is, you typically don't see the actual doctor very often. So, the close relationships are built with the NP's. Erika has provided tremendous reassurance when we've needed it the most and tolerated our mini-freak outs whenever they have occurred. It is these types of individuals that help turn parental shock into an empowered support structure where chaotic days and nights during treatment can be handled more rationally. We owe her a great deal of thanks and really hope we'll be able to form the same bond with our new NP. What a job this is for them. You have to be incredibly organized, compassionate, understanding of the seriousness of every treatment step, and above all you've got to be able to persevere through the emotions that cancer puts everyone through. There's no way a doctor or nurse can go 466 days with one patient and not form some sort of bond. The fatigue on everyone involved can be unbearable sometimes, I'm sure, if not from medical procedures and results....then definitely from all of the dealings with stressed out parents. This is where I believe faith and the power to dream fuel the human spirit. Everyone comes together and just finds a way. I will never stop saying thank you to these wonderful people.
I get asked from time to time about the various drugs Ellie has been given over the past few months. I did a little research and will give some likely too scientific responses in the next post about the various chemo weapons in our arsenal. I did want to say that the drugs we are dealing with now have been around for years. Research and tons of clinical trials (brought together under one roof by the C.O.G. - Children's Oncology Group) has found a way to mix and match these drugs at strategic times in doses and quantity throughout treatment. This ensures the enemy in all of this doesn't get too used to fighting just one drug and build up resistance. In the 1960's 1 out of 25 kids Ellie's age survived. In 2011, that ratio is now 4 out of every 5 in the same age group. We have good reason to dream now....and dream big.
One of my favorite movies of all time centers around the true underdog who attempts to play football at Notre Dame (and YES, the framed poster of that movie still hangs in my house....all be it in a less prominent location than when I was not married :-) ) During the initial part of his journey to fulfill his dream, he loses his best friend Pete to an accident at the family Mill. The hardship is ultimately what gives him the strength to begin his quest away from home and pursue admittance into Notre Dame. Prior to the accident, Pete gives him a birthday gift of a letterman's jacket, a pat on the shoulder, and a simple statement - "Well, you know, my Dad always said having dreams is what makes life tolerable". It is the little things said to us on a daily basis like this which can resonate for a very long time. So no matter how little sleep we get and how tiring the weeks become, the dream here is alive and well...spearheaded now with a bright yellow hat.
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