Tuesday, September 11, 2012

Cancer-Free Anniversary and Repost Series #2

Yesterday was Elise's Cancer-Free Anniversary.  Eight Years ago, yesterday, they declared her to be The Victor.

To celebrate, we went to Scottish Rite for an ABR (a sedated hearing test).  Well, not really, but when you are trying to see specialists, they often have a tight schedule, and when they say you can see them, you say, "Thank you.  What time?"

So, we got up at dark-thirty, and threw ourselves into the car and raced down to the hospital.  No food or water after midnight makes for a snarly Elise...so I usually decline to warn her about that part.  But surprisingly, she was fairly okay with that this time, she put down lots of requests for after...goldfish, pizza, and Chick-fil-a...all of which, I made good on...as always...

I gave her a dolly for celebration, and told her it's name was "Molly" because ALL of her dolls are named "Isa", and it gets confusing...after we wrestled her down and poured half the Versed on her and down her throat, she got giggley and told me the doll's name was "Pizza"...which she remembered after the entire thing was over...and she is still insisting that her name is "Baby Pizza"...

I tried to sweet talk the Audiologist into letting me go back and watch the testing...but, sadly she said, "no".  I had to help them put in the IV for the anesthesia, fight her onto the hospital gurney, and smell Their Soap...you'd think they would reward me for that...with cakes and a parade...at least letting me watch the fun part seems reasonably fair...
She passed the hearing test with flying colors, which was great!  Elise + hearing aids = ulcers just thinking about it.  But she told me that one of the Tubes, that were placed in MARCH, appears to have already fallen out (if it hasn't, it is in the process).  Which led to the discussion of what NUMBER set (6!! in 5 years) this is...and she said that the scarring of the ear tubes may ultimately lead to hearing loss, so be sure to have hearing tests regularly.   Yet another case of "damned if you do, damned if you don't"....She can't hear without the tubes relieving the fluid, but the tubes will probably cause hearing loss..."You can't win, for losing."...also comes to mind.
However, I return to the joy of the day...she is HERE.  And so we had real pizza for supper and chased it with Anniversary spiced cake.
And we snuggled her with abandon!!!  Which she enjoys as much as we do!!
I'll leave you with my thoughts from last year
Why Cancer Can Be Sweet #2

"Today's post gets a little sticky...Not everyone gets to celebrate this aspect of cancer and I understand that. But those that do, cling to it. It is far more celebratory than birthdays and graduations. Everything is dated BC/AC (Before Cancer/After Cancer) and, often, even those that lost someone to cancer cheer when somebody fought and won, even as they mourn that it wasn't their beloved...and so I am choosing to share today our miracles.

One (possible) sweet aspect of cancer is the pathway of miracles that network together for a "win". I can promise you that almost everyone I have ever spoken to has had a series of take-your-breath-away-miracles stories and not just a chemo-took-care-of-it story... I'm dead serious. God uses chemo, to be sure, to save some, but he always makes sure that his thumb-print is squarely on it. In the diagnosis, the protocol, the timing...something. I don't care who you are, it's all HIM, baby!!

Elise had Open Heart Surgery in February of 2003. (I know I've told this story before, but it is intrinsic to her pathway of miracles!) Because of the surgery, she was put on a diuretic. She had a couple of runny pants and got very quickly dehydrated and turned blue. She was rushed to the emergency room. That day, we learned that she had virtually no platelets. The platelets are the clotting agents in the blood. It was the first indicator for cancer. She was less than 5 months old and was in a pre-cancerous condition. It was coming, we just didn't know when.

We watched it for a full year. She was diagnosed with the pre-cancerous conditon March 6, 2003. She was diagnosed with AML leukemia February 26, 2004. She never "presented" in her bone marrow. She presented in the form of "liquid tumors" in her sinuses. We were told that the tumors were mere weeks away from her optic nerve. EVEN with us watching it and getting bloodwork every few weeks and bone marrow draws every couple of months!!!! If she had not had the heart problems and the corresponding medication, we would not have had the blue baby incident. If we had not had the blue baby incident, we would not have known to watch for the cancer. If we had not been watching the cancer, she probably would have lost her eyesight and her cancer certainly would have been a lot further along, compromising the likelihood of survival. (Also, interestingly, the sinuses can regenerate, the optic nerve does not.)

The chemo protocol that we chose to put Elise on, was not a "standard" protocol, it was still very much in it's early stages. If I had not had a year to research our chemo options, to read the studies and medical discourses on the various options on Down Syndrome and AML; I don't know that we would have chosen the new protocol. I really don't. The standard protocol was quite successful, and there had only been about 10-15 people on the one we chose. The new one had had 100% survival, but still that's not enough cases to relieve any one's mind about an "experimental" treatment, especially when you don't even have time to tell you how successful it had actually been, or the side-effects...usually, we wait and do the experimental treatments when the first choice fails. But because of our INSANELY worrisome year, I had time to read medical discourses and theses on the subject and what were the combinations of the most successful protocols. And I am not medical. I just had the time to educate myself.

We even had a few miracles fall into place for our son. At 5, we had to send him to "Grandparent Camp". The unfortunate aspect of Elise being so tiny and fragile, was that her chemo was ALL in patient. So rather than make Gabriel live at the hospital and be locked down from a real childhood, he went to live with my parents and my in-laws, on rotation. My mother was a school diagnostician and got to pick the school, the classroom, and the teacher that Gabriel got. He was placed in an inclusion classroom, and because he was entering Kindergarten in MARCH, he not only had the mediation to not get completely lost, but he was able to get caught up, completely. And so, he thrived and graduated Kindergarten able to move to 1st grade. He got a somewhat normal life, playing with friends and making normal memories, and bonding with his grandparents in a manner more...MORE! than anyone else gets to!! Such a blessing! We had to trust heavily that God would fill in the holes in Gabriel's life...and we spent a LOT of time on the phone listening to all his normal stories...and being blessed by his joy...and of course all his effusive and happy visits!!

Also, in waiting, we were able to move to the Atlanta area and be blessed with Children's Healthcare of Atlanta AFLAC Cancer Center which is ranked 12th in the nation for their cancer program according to US News and World Report. Which is why we even got the option of the new protocol....kinda cool, huh?

SO....today is Elise's Off Therapy Anniversary. She has been officially cancer-free for 7 years, TODAY. I still get a kick that she managed to time it in Childhood Cancer Awareness Month. (And be born in Down Syndrome Awareness Month and have her Open Heart Surgery in Heart Health Awareness Month...but those are other stories...) But this is the day I celebrate in my heart with more joy than her birthday at the end of October...she was given back to us again, to celebrate and treasure. We are indeed blessed. The network of miracles that God made, shines in her path and gives light to the dark moments...If God did THAT, you know he can handle anything, with flair and perfect timing!"

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