We have been down to the hospital twice since I last wrote and the doctors are very pleased with Max's progress at this point. They are continuing to watch his CMV level (the virus that I told you was dormant in his body last week) and it has been rising. They may need to change our course of action if the level continues to go up and there is a possibility that it would involve going back into the hospital for several days to get a specific medication. We are due back down there on Friday again so we should know at that point what the plan will be, if not before then.
The boys had a sleepover last Friday with their Poppy (my dad). When I asked Max what he wanted to do when he got home from the hospital, he said that he wanted to have a sleepover in the family room with Poppy and watch movies and eat smores. So, we arranged for that to happen last Friday. The guys watched the Cavaliers game and ate delicious Graeters ice cream (courtesy of my Aunt Annie and Uncle Garry...thanks guys) along with smores. Then they stayed up late telling each other goofy stories and giggling until mommy told Poppy that it was time for bed! :) Nobody has a Poppy like Max and Alex do...he is their best buddy.
Things have definitely settled down around here and we are beginning to create some new routines again. I am getting the hang of administering the IV medications...it has actually become somewhat simple already. We are already down to just two in the morning and the evening (they cut the overnight fluids thankfully) and know that with time we will be done with them completely. The doctors are also going to begin weening Max from the steroids (given to help prevent graft vs. host) on Friday which is great news since those make his heart race and give him a ravenous appetitite! So, things are progressing and are "boring" at the moment...something that we grew to LOVE during our hospital stay. As the doctors would always say there, "we LOVE boring."
I have had some questions lately regarding Ellee and how she is doing so, I wanted to let everyone know that she is doing great. She has healed amazingly well. You can barely see the marks on her lower back/hip area where they harvested the marrow. She seems to have her normal energy back and looks great (ie no more paleness). Quite an astonishing thing. I was watching she and Max play together this morning and thinking to myself, "wow...HER blood is pumping away in HIS body now! What a miracle!"
Matt and I are beginning to see the light at the end of this long tunnel more and more each day and really begin to feel the enormity and beauty of this story. It has really been a whirl-wind to think that this all began less than four months ago (January 12th) and here we are, already at home after Max's bone marrow transplant. I don't think we have had the chance to really reflect on what has been going on in our lives and now that we are getting some time to do that, we are a bit floored by it all.
I met a wonderful woman in the grocery store yesterday, of all places. The Starbucks lady, Suzanne, who I have struck up a friendship with (yes, I frequent Starbucks way too much) connected the two of us, thankfully. Her son is a fifth grader at Maddux Elementary here in Anderson Township and is currently undergoing treatment for a brain tumor. We also met another family while we were in the hospital who's son, Tony is going through the same thing. They are also from Cincinnati and were the only other family in the BMT unit that was from here, like us. The boys undergo multiple rounds of stem cell transplants from their own bodies due to the intensity of the chemotherapy needed to treat their conditions. These families are incredible and I feel honored to be in their company. These unfortunate situations in all of our lives have drawn us together and we hope to all celebrate the health of our beautiful sons together soon.
I have learned so much through this experience and continue to learn more everyday. It has definitely changed my perspectives and priorities in life, to say the least. I have already learned to cherish each day that I have with my kids and to make the most of life every single minute. I am not letting the little things get in the way of the big ones...like cuddling, building Legos, playing basketball, tickling, etc! I am looking forward to spending lots and lots more time just having fun with my little ones in the future.
That's it for today on this marathon journey. I promise to write more soon.
Kristi (and Matt, Max, Alex and Ellee)