Sunday, October 30, 2011

Day +942: Caught up in life!!

It's day +942 and I am finally getting around to blogging!  It's been over 2 months since my last blog, primarily because we have just been so, so busy enjoying life and living it up!!  Max continues to do very well and is really enjoying 4th grade and gearing up for basketball season!!  The pace of our lives around the Meyer house has gone from about 0 to 60 in a relatively short amount of time and we are all trying to keep up, although we are beyond grateful to be so busy and able to enjoy life once again.

Fourth grade has been quite challenging for Max, as I have heard it is for many of the kids.  At his school, Wilson, 4th grade is the first step into the secondary part of elementary school.  I had no idea what that meant before now but, we are sure learning!  Essentially, it means multiple subjects each day with multiple teachers and multitudes of homework!!  Lots of projects, big tests and much more time spent on school work than ever before.  We spend at least an hour to two hours every weeknight evening working with Max on homework.  He is additionally challenged in that he is still making up for lost time for sure.  Being home school for 18 months while you are sick just is not the same as actually attending school with your peers for the same amount of time.  But, he is making great progress and really beginning to get the hang of 4th grade.

Alex is doing fabulously in 1st grade, although the transition to being there all day, 5 days a week has been difficult for him.  He did really well for about the first 4 weeks and then, all of a sudden, he started having little melt downs and wishing he didn't have to go to school everyday!  We think it set in at that point that he had to do this now 5 days a week!  Always a hard reality to accept, especially when you couldn't leave home just a year and a half ago!  But, he is now finding his way again and getting more comfortable with the whole routine. 

Ellee is loving preschool!  She goes three mornings a week and has made lots of new friends at school.  She is a little social butterfuly these days and is really growing up!  Ellee just celebrated her 4th birthday last Monday and Alex celebrated his 7th birthday on October 13th.  Hard to believe!!  There are lots of pictures from both available in the fall album at the right side of the blog page if you'd like to check them out.  And, speaking of birthdays, Max's 10th birthday is coming up on December 26th, followed by his day +1000 on December 27th!!!!  Now is that cause for celebration or what???  We are planning a very special family shin-dig and going all out with all the cousins at the Great Wolf Lodge!!!

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 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.

The other major thing that has been going on this fall was the Walk for Children's Hospital on October 15th.  We ended up having an absolutely gorgeous fall day and a fabulous turnout and are proud to say that, thanks to our wonderful support community, we were able to raise over $10,000 for Dr. Davies bone marrow failure and pediatric cancer research!  That brings our three year total to over $30,000!!!  We are thrilled to be able to provide this much funding to help future children through cancer and/or the bone marrow transplant process and into survivorship!  Additionally, we had a ball again at the Walk, watching Max and all the kids enjoy the day and were very blessed to have our dear friend, Lynn Merk, join us.  We know it was a very difficult thing for her to be there, remembering how much Tony loved being there and we were so honored that she came and that we were able to raise money for research in his memory.  There are lots of pictures available at the link on the right side of the blog page if you'd like to check them out.

Max's Meals has continued serving as usual!  We are actually about to head out for our Halloween luncheon in just a few hours here today!  Additionally, we have been providing cakes and balloons for months now to patients celebrating their birthday while in the hospital and have a Dairy Queen ice cream cake delivery this coming Tuesday for a young man going through bone marrow transplant that is turning 18 that day!  We are now working on extending this offerring to include a full meal, along with the cake, for the entire family and are also planning to offer cakes or cookies to help patients have a "Cell"abration on their bone marrow transplant day (aka Cell Day).  Serving in these ways has brought lots of joy to all of us and is always a wonderful reminder of where we have all been and what is truly important.  We appreciate all of the support that all of you have provided to continue to make Max's Meals a reality.

Obviously, life is busy and full of great moments around the Meyer homestead!  Not a minute goes by that we are not eternally grateful for how well Max is doing.  Thank you all for continuing to follow along with us on this journey and for your unending love and support.  More soon...or maybe not so soon as I can take time to stop enjoying life with my family and write!!!  :)

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)