Last Thursday, Logan had another uneventful chemo session. He slept through the whole 3 hour infusion again. I have to say it again, I love the addition of Benadryl to his treatment! We spoke to the doctors at length about some long standing issues.
First, Logan has been limping on and off for a while now. While the first incident was related to an injury, the re-occurrence of the limping, as well as complaints of foot pain without a recent injury, have us all scratching our heads. He is no longer on the medication that causes nerve damage, but there are still cases of patients experiencing foot and leg pain on his current medications. Since he has been off the Vincristine, Logan has shown some additional weakness in his left foot. Since the issue isn't consistent or really interfering with his functioning, we can just wait and watch (the overall theme with NF). If it really becomes a problem, they will do an MRI to rule out any damage. The second issue was the fevers. We have adhered to the strict fever protocol from the beginning. When Logan's fever hits 101.0 we call and are always instructed to go to the ER (for 2 days) for IV antibiotics. While I totally understand the need for the extreme precaution, it is certainly less than desirable. Logan gets a fever EVERY Friday after his chemo infusions. We have yet to see a week when Logan does not have a spike in his temperature. Thankfully, lately the spike in temperature has resolved quickly enough and not gone high enough to require a trip to the ER. We spoke to the doctors about this and our concern for this being a regular occurrence. The kid goes through enough with having to get punctured and pumped full of poison for three hours every session, we really hate to have to add addition pain on top of that. Not to mention that the ER port assesses are TERRIBLE! Since fevers seem to be a pattern, but Logan's body seems to be able to manage it on it's own, the doctor's have allowed us an addition .5 degree flexibility with the protocol. Now instead of going to the ER at 101, we don't have to go until his fever hits 101.5. Win!
Spending so much time at the hospital, you get to know the other kids that are there for treatment. You see them every week, you learn their stories and you get to care about them and their families. This week during our 7 hours at the hospital, we got to know a little girl and her father, who have been receiving treatment for some time, but our paths have never before crossed. This little girl is the same age as Logan and, like Logan, was diagnosed shortly before her 2nd birthday. Other than that, her story is very different. She was diagnosed with an aggressive kind of brain tumor and has been receiving chemotherapy treatment since. Shortly after her diagnosis, her mother suffered a series of heart attacks that eventually killed her. Her father remarried and together they raise her, along with her 5 siblings (including one with Autism). This little girl, knowing and understanding her condition, speaks very frankly about it, and at 4 years old, is comfortable enough saying
that she is going to die, but that it's ok. While they were there, the father was meeting with a social worker to arrange his daughter's "make a wish". As if this little girl wasn't brave enough, as if battling cancer, facing death and going through painful treatments, all before her 5th birthday, didn't make her brave enough, her "wish" shows she is braver than most grown men! Her "wish" was to swim with sharks!
These kids, that battle with such strength and courage, never fail to amaze me.
You have to wonder what dying means to a 4 or 5 year old. This young girl had her mom die when she was 2, so she must understand the permanency of it (if she remembers much about her mom), but is young enough to not be able to imagine what she will be missing, which is a blessing.
ReplyDeletePeople's lives take such unexpected twists and turns. Though we wonder "why," we can only walk on the path that is before us, and try to do it with grace and courage. These children are an example of that.