Saturday, September 24, 2011

Our First Year with Leukemia

We all have days in our lives that re-route our paths. These days stand out more than others, and we remember the minute details. Sept 23, 2010 was one of those crazy, disorienting days for me. I remember the feelings and the looks from the doctors. I remember exactly how it sounded to hear "the labs do indicate leukemia", "we are very concerned", "we need to make sure there are no tumors", and "he is in critical need of a blood transfusion". We had no idea what the tests were going to show and, for that day, we really thought we might lose our baby boy. It wasn't long, though, before the tests came back and we were told that he has a very curable form of cancer. It was a relief that I can't explain. At that point, it didn't matter how long or hard the treatments would be. The point was that there WAS a treatment and that he would almost certainly be healed, eventually.

The fall continued to be a whirlwind. He was in pain almost constantly for about 6 weeks. Four of those weeks were spent in the hospital (5 days in the PICU). We celebrated his 5th birthday in the hospital. He had many problems with his stomach and would scream in pain over and over... it was an ear-piercing scream. One night, just when I thought I couldn't listen to him scream or see him cry anymore, it stopped after he said "only God can help me now", and we had one night without pain. Through this, we got the great news that he was in remission (as was the goal in that time-period).

Slowly, many of the pains subsided, he lost his steroid weight, and began to return to normal. We got used to our new routines of weekly doctor visits, nightly meds and Hickman dressing changings, and regular chemo. He had several-week blocks of feeling good and almost totally normal. Some days and weeks are harder than others, but, overall he's doing well. Most importantly, the cancer has responded to the treatments and has been kept away. Also, his blood counts usually stay up high enough that he doesn't get dangerously ill.

We are not the same family we were a year ago. We aren't done with all the trials yet, and things still get difficult and stressful, but we're surviving. There is no way to explain how much everyone's support has helped us. I feel guilty sometimes because I didn't do a good job of thanking many of the people for what they have done, especially early on and when Jon lost his job.

Through it all, God as been with us. I could almost physically feel Him holding me up during those first few days. This is all part of our journey and is contributing to who He intends for us to be, especially Joey.

Thank you all for the moral and financial support, for the prayers, for the love, and for the practical help we've been given.

Here is a summary of Joey's "stats" for his first year of treatment:
4 hospital admissions
3 ER visits
70 Visits to Dr Rosen (roughly)
3 Surgeries (Hickman)
2 bone marrow aspirations
10 spinal taps
6 blood transfusions
1 platelet transfusion
7 chest x-rays
2 CT scans
70 CBC's
3 EKG's
2 Electrocardiograms
56 days of steroids
32 rounds of chemo drugs (different types, including 364 MTX pills)
3 sinus infections
2 Hickman infections
5 Rounds of antibiotics

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