Sunday, October 30, 2011
Day +942: Caught up in life!!
Being back at work for me has been great so far. I recently went up to 20 hours or two days a week in the office and I am really enjoying having a little piece of "me" back in our lives. Overall, the kids are doing well with it too. We have had some rough spots along the way - a couple of my work days where the boys nerves caught up with them or something and they were "sick" but, seemed to feel much better about an hour after I said that I would stay home with them. :) But, given everything we have been through as a family over the past couple of years, that is to be expected. This fall has really been huge leaps back to reality in comparison with where we have been the past few years so, some rough spots is nothing!
Matt and I actually got to get away in September for a weekend, which was really nice. We went to Atlanta to a bone marrow transplant survivorship seminar and it was beyond fantastic! There were probably about 500 attendees, all of them either transplant survivors themselves or caregivers/family members. It was so amazing to be in a room of that many people and to realize that they had all experienced something similar to what Max and our family have experienced. I shed many a tear at that awesome realization. Without modern medicine, that room would not have been filled...and now, we are moving far beyond just surviving. The objective of the conference was to teach survivors how to not just survive but, to thrive beyond transplant. It was so educational and inspiring for Matt and I. Unfortunately, they do not have a parallel session for pediatric patients yet so, we did not bring Max along. We knew he would be extremely bored and were glad that we had not brought him. We are hoping they will add a session like this in the future so that he too can come and experience the comraderie and shared brotherhood that we did.
There were about 15 other pediatric parents/couples at the conference along with us and we really enjoyed getting to know many of them and sharing our journeys. We came away with three main areas of concern that we wanted to explore more deeply with Max's caregivers and we have since been doing that. We learned that some of the chemotherapy that Max received has been shown to cause hypothyroidism and some brain damage that can lead to learning and behavioral problems. That was obviously a difficult thing for us to learn as we had no idea when we administered it to Max but, we also had no choice at the time. That is why research is so important...to find new chemos with less side effects that still accomplish the same goal. So, we have been working with an endocrinologist over the past month or so and, although Max's thyroid gland appears to be working as it should, we discovered that he has not been growing like he should for about the past 10 months. At this point, we are increasing his caloric intake in hopes that will give his body an extra boost to get growing and also testing him for a few other food allergy type issues. Obviously, this is very important as we know that Max is going to be very small already, based on genetics. We certainly don't want him to be any smaller than he is already predisposed to be! We are also waiting to have him neuro-psych tested to see if there has been any damage to his brain that may cause him to have some special learning problems that we can put plans in place to help him with.