If you have a few minutes and need not have total quiet around while you read, consider listening to the song that has been a bit of a hopeful theme for Polly and I this past week while our family was separated between home and LPCH. It isn't THE song of all time, but for the lingering final days of August at LPCH, this was a little musical escape that provided some relief at night while we chatted online. It is "Every Teardrop is a Waterfall" by Cold Play - Click HERE. Feel free to just turn that volume button to the right a whole lot...
I read a passage on one of the online Leukemia support websites which has rang true in the last few days and something I hope to grow into a bit more. It serves as model for daily strength. The question asked throughout the passage is this - "Are we here to weather the storm....or are we here to go dancing in the rain?"
Ellie was discharged from the hospital on Thursday afternoon just ahead of the labor day weekend. This ended her 8 day stay battling a virus, a bacteria infection, and the bad side effects of the Vincristine chemo drug she's gotten the last two weeks as well as some very nauseating anti-biotics. She got through all of it. I feel like we're dodging bullets here sometimes, but she is home with us now and at times a lot happier than last weekend. We had wanted to do a beach day this weekend to celebrate her being home, but her nausea has been pretty intense the last few mornings (and an evening or two). So, we decided the long trek over the hill to the beach was not the best idea. A very good friend of ours offered an awesome alternative to come sit at their pool and let the kids swim.
Timmy & Ellie were both in weekly swim lessons prior to Ellie being diagnosed. We were going to a pool in Portola Valley with an extremely kind instructor who had been working with kids this young for a very long time. During Ellie's lesson the Saturday before June 26th, she wasn't her normal self like she had been so many lessons prior. While she typically tried her best to swim to the wall and back all too excited to give a confirming glance back amongst a teethy grin to us that she did in fact just accomplish perhaps the greatest thing ever in 2 year old water-lore, on that day day she cried the entire lesson and wouldn't let go of Polly once. Today marked her first trip back to the pool since then and we got some pretty darn good smiles for it. Her queasy stomach didn't allow for all of what she was capable of a few months ago, but just being in the water was good enough for us. We topped off the day by making some gourmet Cheese Truck grilled cheese sandwiches (so good). Ellie passed on the sandwich but put down some pasta so it was good enough to make the day a good day. We are very thankful to our friends for making the pool pleasure possible.
She is at the halfway point of the 8 week Consolidation phase. We must now make blood counts to repeat the same four weeks again this Tuesday. Her counts were on the rise when we left LPCH a few days ago which is a great sign. Her platelets were already above 300 (normal) and her ANC (immune system) counts were hiking upwards of 350 (She needs to be at 750 by Tuesday). White blood cells with El tend to shoot up in large spurts so given that the only chemo she really had this past week were Vincristine and low dose Methotrexate (both not big immuno-suppressants), we are very hopeful to stay on schedule. The next four weeks will be exactly the same as the last four weeks minus the four spinal shots.
The toll on her body from fighting the virus this past week has put her in a place with some of her meds that she doesn't want to eat anything. We are trying everything in our power with food but to no avail. It is a fine line to know when to stop attempting to give her food because we've had a "reversal of fortune" on several occasions this week. She has lost some weight now and is looking much thinner (never thought I'd actually miss the Steroid days from early July). This adds to the worry of the situation a whole lot. Appearance can be such a reassuring thing when we see things we want to see. The anti-biotics ended today so that will be one less annoyance to her appetite and all we can do is hope tomorrow brings a little more relief. This three day weekend has been a bit of a rocky road because we did get the smiles in the pool but she is also not completely back to 100% energy like she was before Consolidation started. If we clear Tuesday's labs, she'll have a long chemo day on Thursday like we did in early August where they give her a drug that requires 2 hours of pre and post hydration. If there is a needed transfusion, that will happen on Tuesday after labs.
The Bass center waiting room offers an opportunity to meet several other cancer warriors and show support sometimes by something simple as a friendly smile. How much more fervently can I say this - these kids are Heros. They do not get caught up everyday like we do with questions of "Why me?". They just do what they do to dance in the pouring rain without too much worry of tomorrow. I know we will all be remembering the Sept 11th tragedy in a week for the 10 year anniversary. 9/11 was life changing, something dare I say not many fathomed was possible. We see families in the Bass center every week now who are experiencing their own personal "June 26th". I never in a million years thought cancer would happen to my little girl. September is Childhood Cancer Awareness month and I hope you will join me in spreading the good word. In doing so, I also want to share with you an awesome video put together by one of Ellie's friends, Jacob, from the Bass center (who was diagnosed with the same Pre-B ALL 6 months prior), so aptly nick named - The Leukemia Slayer. Click HERE. Side by side, Mr Slayer, we proudly fight next to you.
There is just so much of me that wants to be done with all of this. Every groan from Ellie and every happy, healthy child we see having the fun their supposed to be having when we pass by can trigger that thought. But, our forever shift in course from June 26th has changed the perspective from wanting to just get this over with....to working through everyday to find the wonderful person that we know Ellie is now and will be for many days down the road. I can't see the end of this particular "storm" right now and frankly I don't care about that on a daily basis anymore. When she laughs, I laugh...and we all relax for the moment. I'm not sure I'm at the point where I can dance in the rain quite yet, but somehow, someway I know we are moving forward. Very much like the car ride a couple weeks ago, I CAN say I hear the music loud and clear.
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