I could accurately describe the last year and half as the season I cried myself to sleep. Cancer treatment is a fight for life & there is nothing like watching your child struggle through it. If that statement sounds like the start of a whimsical, heartfelt poem, I can assure you it isn't.
During Natalie's treatment there were a few things I kept track of that Id like to share with you. Its been a long road and part of the joy of seeing her come through the other side is the memory of where that road took us.
From diagnosis day to remission day 1 was 544 days.
Natalie received 325 doses of chemotherapy in that time. If that doesn't seem like that much, I will put the toxicity of these treatments into perspective for you.
It took a regular regimen of 27 different medications, not counting the actual chemotherapy drugs, to counter the MANY side effects of her treatment. From stomach problems (which we are still dealing with and will for a long time) all the way to severe skin rashes that looked like her flesh was burning away from the inside.
At one point she got an extremely complicated infection that took months of daily injections to counter. 430 hours worth of injections to be exact.
Those antibiotics and other medications would wreck her body and cause her to develop C-Diff 11 times. If you don't know what that is, do yourself a favor and NOT google it. Its pretty gross.
In her time at St Jude Natalie was admitted into the hospital for a total of 181 nights. (most of the treatment is outpatient treatment and we go back to housing at the end of the day unless there is a problem) The longest stretch being 29 days at the worst of her infection. It was during that time that she lost her ability to walk, sit up unsupported, eat and drink or make any sounds verbally.
Natalie went through 28 days of radiation to her entire abdomen and was sedated 39 times.
She received blood/platelets approximately 48 times. This is not counting any blood she was given during her 3 surgeries, because we were not told the amount given, just that it was necessary.
Natalie is still on medications to counter some of the longer lasting side effects & we have been given the lengthy and depressing list of things Natalie will have to deal with forever.
But, its just the price you pay.... Her life is so valuable...
Every child's treatment is different and even though Natalie's was relatively long, there are children who have double, even triple (or more) the days. Everyday I think about the people we left behind in Memphis. Friends who still fight. Who still pray more than they do anything else. People who are waiting for a miracle... Parents who we grew to love that are now and forever grieving the loss of their precious child... People who are walking into the hospital for the first time... Who are breathless from the same anxiety, the same gut-punching fear that we felt for so long.
Some days were good. Some days were not. All bad days had moments of joy & all good days had moments of stress, fear and sadness. Some days I felt numb. There were many times I just had to take a second, with my hand on my heart, to tell myself I could keep going as long as my heart was still beating, even on the days that same heart was breaking. For this child I will do anything.
The moment we found out Natalie no longer had any evidence of disease... I lost my composure. I stomped my foot several times and clapped as I whimpered "Oh God Yes" in a way that is not at all a reflection of the strong woman I have painstakingly become. But, I think God is honored by those honest moments. The many, many times when complete and well formed sentences were replaced by pure emotion. Sometimes agony. Sometimes joy. Sometimes a weird combination of the 2... There are no words to accurately describe those feelings.
It was hard to leave. We hugged everyone on her Oncology team and said our goodbyes the same day. A hug just seemed so anticlimactic. How do you just say goodbye to the people who worked so hard to save your daughters life? How do you thank them and it be enough? How do you move on from that miracle?
Its been 3 weeks.
Natalies hair is growing so quickly and she is getting a little weight back on her body.
She moves with a spark, and we are all enjoying being able to breathe again.
3 weeks down. A lifetime left to go.