Yep!! You read that right! We got to go on our first family vacation that did NOT involve St. Jude in any way. This was a major milestone for us. Last year, I remember Jack got to tell about what he did on Spring break, and he got to tell his class members how he spent his vacation at St. Jude. Now we did take the kids to the Memphis zoo, but sitting in a hospital room all day while your sister is getting high dose methotrexate over a 24 hour period isn't much of a vacation. This time, we had absolutely nothing to do with cancer what so ever! And it was wonderful and amazing.
First let me explain a couple of things about having a child with cancer. It is very different if you had cancer as an adult. Not worse, not better, just different. A child cannot tell us when he/she thinks she is coming down with the flu, or a cold because they have yet to understand those symptoms. As a mother of a cancer child, every time Lucy does complain about something my mind goes to one place: the cancer is back. But in reality, it could be a side effect of chemo, it could be the flu, or it could be something entirely different that we have not dealt with yet. The other part that is different is the type of cancer. Leukemia is a cancer of the blood and essentially the immune system. Since it lives in the bone marrow where all fighter cells are produced, the goal during treatment is to keep their immune systems low (have to kill the good cells with the bad), but not too low that they become neutropenic and could have complications from a fever where they could literally die. So its a balancing act. And as a Parent of a child with cancer, I don't always know when Lucy has "good" numbers or not. And mind you good to us is not anything in normal range. So its my job to protect her from getting anything fungal or bacterial, which often means avoiding crowds, skipping out on family get togethers and sometimes just laying low at home. And the rest of the time when we decide to let her do something regardless of the numbers, we are taking a risk. We have to balance her life though. Protect her while also letting her be a 4 year old. It is not an easy task. And unlike other cancers, leukemia has a LONG treatment plan. 3 years is pretty damn long to worry about these things day in and day out.
So we were referred to an organization in Missouri that gives families who have a child with cancer, the chance to have a mini vacation to "get away from reality" for a few days. http://www.uoftrl.com/ Check them out and their founder Don who himself is a 2 time cancer survivor. So we picked our days when we wanted to go and got a confirmation, and then we held our breath. We knew if Lucy's numbers weren't high enough, we would not be able to go. So we kept her home and away from everything. We told very few people about the vacation (didn't want to jinx it). We waited...we waited until the Wednesday of clinic day which was the day before we were suppose to leave for the trip. And that entire clinic visit, we were on pins and needles waiting for Lucy's numbers to come back. Finally Dr. Al said her ANC looked good enough to go and to enjoy ourselves. I must also mention, the place we went was literally an hour away from a St. Jude clinic, which is the other reason we got the ok to go from the doctor. Of course, no swimming, wear a mask as much as possible, but other than that do nothing but have fun.....which is exactly what we did......to be continued
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