Friday, December 20, 2013

Chemo Santa

Today's chemo was more or less like the others. The conversation with the doctors revolved around his NONSTOP appetite and the continued behaviors that we see. As far as the appetite goes, the doctors said that could be a good sign that the chemo is working. He said that sometimes, with tumors in the hypothalamus, kids experience decreased appetite so when the tumors shrink, they see an increase again. I guess we will find out in a few weeks when he goes in for his MRI.

The behaviors have been something we have talked about for years now. We put that on the back burner when we started chemo so that we could get him stable on treatment. Now that he is doing well and hopefully getting better, we brought it up again. Behaviors of concern are general inattention, hyperactivity, lack of impulse control, etc. All very common with NF. Basically, we can't take our eyes off of him for a second without him doing something destructive, unsafe or otherwise undesired. The doctors suggested a low dose med similar to Ritalin. I swore I would NEVER medicate my child. As a kid, I was on Ritalin and later Adderall, and I know first hand what that does to you. I didn't want that for my kids. After seeing Logan struggle and know that he really can not control himself, I know that something needs to be done. We have tried everything (and given my job, I like to think I know a thing or two about behavior management), positive reinforcement, negative reinforcements, rewards, punishments.  Nothing seems to work.  I want him to be safe. I want him to be available to learn. I want him to be able to stop and think and make decisions based on what is right, rather than what he thinks first. We are going to give it a try and see if it makes any difference. Hopefully this will help and allow us some flexibility to provide Logan with the independence and learning opportunities that he needs. 

Today was also a great day at the clinic for the kids. When we arrived, we were greeted with a Christmas tree surrounded by probably hundreds of presents. These presents were donated by the family of a former patient (I assume the same one I mentioned months ago that gave out goody bags to all the chemo kids on their deceased daughter's birthday).  All of the kids coming through the clinic got to pick out their own presents. Logan picked a keyboard, or compiano as Logan calls it. In addition, there was a holiday party for the inpatient and outpatient chemo kids with food and cake and more presents and SANTA!!  Logan was so excited to go see Santa, he even woke up from his Benadryl induced nap for it.

All in all it was a great day for Logan at chemo. One more treatment before his next MRI where we will hopefully get some good results.
Hat head and a mouth full of cake

Friday, December 13, 2013


It's been a little while since my last update and of course that is a great thing.  It means nothing truly eventful happened.  We had a great Thanksgiving with family and a low key few days at home thanks to the snow that kept us all home.

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.