Courage for Kennedy – Journal

August 20, 2007

Thoughts on Ending Treatment…

Category: Treatment – Melenie – 2:54 pm

I was going to take this time to update on Kennedy’s medical front but with her off treatment day barreling down, I thought I would take this time to reflect on some of the thoughts and emotions that are weighing on our minds and hearts…

“Off Treatment” no words ever sounded so glorious and so terrifying at the same time. As we sat in that family room in one of our first meetings and heard Dr. Chu say that Kennedy’s off treatment day was more than 27 months away our hearts sank to our knees. We could not comprehend the idea that Kennedy had cancer or that her treatment would encompass nearly every day of her life until she was almost 7 years old. It was literally incomprehensible. There are simply no words to describe the hopelessness and despair you feel at hearing your child has cancer. Then to find out that this nightmare had almost no end in sight was more than devestating. We wondered in those next weeks and months how we would possibly survive until the day came when Kennedy would have not a single chemo pill to swallow. As we fought her to take a multitude of pills sometimes redosing after she would make her self vomit, crushing them night after night or diluting them to the point they would safely pass through her NG tube we could not possibly get to the end of this nightmare fast enough. The days and nights and weeks spent in the hospital while she endured 24 hours of continuous chemo, raging, uncontrollable fevers, intolerable pain from weeping sores both inside and outside her body, unable to eat, sleep or even sit without tears and crying or the dreaded “leg pokes” and blood draws and IVs when things went wrong seemed to go on and on and on and on with little hope of ending. But through it all, one day stood out as a beacon of light, a lone tower of hope rising from the darkness of despair…August 23, 2007…the day when life could safely return to normal and we would all breathe a sigh of relief for Kennedy and for all of us…and the day is coming…quickly.

I have watched many, many families pass the day with much fanfare and much worry. No longer under the safety net that chemotherapy provides in keeping the dragon at bay, we must open ourselves up to a world without the shield of poison and hope that all of the swords, daggers and cannons we have aimed at the beast have caused it’s demise and not just sent it in to retreat where it has hidden in the deepest caverns only to gain strength and a new endurance and return with a fierce vengenance. We have seen that happen as well. We have to trust that we have pulled every last scale from the dragon in every hidden corner and dark crevace and ripped every ounce of life from it so that not even a sliver can regenerate and regrow the evil beast anywhere. We have given Kennedy every first line defense currently available. We have soaked her blood with poisons that would devour flesh and scar it forever. We have killed every fast growing cell including the leukemia, her hair, her nails, her skin, her bones and even those in her brain in hopes of destroying the beast forever. She has endured countless pills (more than 2,000), 22 spinal taps with toxic chemotherapy, 8 radiation sessions, 45 doses of IV Vincristine, 4 doses of IV Daunorubicin, 11 (22 total-1 in each leg) shots of PEG, 26 weeks of Dexamethasone steroids, 32 doses of IV Ara-C, 4 IV doses of Cyclophosphamide, 4 high doses (24 hours) of IV Methotrexate, 5 doses of escalating amounts of IV Methotrexate, 6 doses of Doxorubicin, 2 weeks of Thioguanine (6TG) which almost took her life, and countless doses of oral 6MP and oral Methotrexate. We have been assured that we did EVERYTHING possible short of a bone marrow transplant to kill every single last leukemia cell in her body. And the end is almost here…can you imagine how we feel about that?

Kennedy is beyond excited to eat ice cream after dinner! This has been impossible due to her medication. She can’t wait to have hair again! I told her we are going to clean out Claire’s as soon as her hair will hold a clippy. She is thrilled not to have any more pills to take and no more days of feeling like she is going to throw up all day. She wants her energy and strength back and to be rid of her orthopedic braces. She is a girl with a mission!

Austin looks forward to less whining, no steroid rages and fewer appointments to sit through. He wants to never be told again that we can not go somewhere or have people over because of germs. He wants to eat and play at Chuck E Cheese.

And Keith and I? We look forward to all of that and more! And yet chemo is a double edge sword. We hate it and we love it. It has at times made our lives a living hell and yet brought assurance that as long as she took her pills, had her IVs, etc…it would stay away. And now that dreaded, smelly, stinky, yucky security blanket is about to be ripped away from us. I told Dr. Norwood that I can’t wait for her to be off chemo so her hair will grow back and in the same breath asked him if he could just keep her on a low dose forever and ever until she dies a little old lady. They can’t and he won’t. So, we are excited and terrified in the same moment.

I hear, and please feel free to chime in, that many parents feel the same sense of joy and dread. We know that they will be checking very closely (every month the first year, every other month the second, every 3rd month the third year and every 6 months for years 4 and 5 off treatment) and we also know that if a child is going to relapse, it is often going to occur in the first year. I told the doctor I did NOT want to be blindsided again and he assured me that if she relapses I would be. He said we will not see it coming. I think he meant to cause me less worry (I have no control over it so don’t worry about it) but he only made it worse. I HATE walking blind. It is all about stepping out in faith. Trusting that the doctors and us have done everything we can and it is in God’s hands now. It was always in God’s hands, that is true, but you can’t keep a mama from worrying about her babies.

I have more to share…more to comment on…and more going through my mind but just not enough strength to keep doing it right now…

In His hands,

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