Wednesday, March 20, 2013
I am not counting days post BMT anymore....I have transitioned to counting months. Yesterday Dillon passed the 6-month mark post transplant. He is doing amazing in so many ways, and then there are these underlying, seemingly small but could turn into huge, issues that continue to plague our day-to-day lives. First and foremost, Dillon's energy and enthusiasm for life have returned. He is happy, he laughs, he jokes, he teases his brother, he talks back to his parents, he refuses to do his homework. I am in awe and amazement that his personality is fully intact and progressing with maturity as he approaches his 12th birthday in a couple of months.
The eating issues continue. He has had a steady decline in his appetite since we got home. He is now struggling to eat enough to maintain his weight and has in fact lost about 3 pounds in the past 2 weeks. Our underlying fear is that it is the gut GVH returning. I spoke with a nurse today that said it is common for the GVH to wax and wane. My concern is if it is back and we don't treat it aggressively and promptly that it will get worse over time and then become harder to treat. GVH of the various organ systems is one of the main mortality factors in BMT...so I am on pins and needles. I am trying not to obsess and freak the poor kid out...but seriously...I am worried. Don't us moms always worry when our kids aren't growing?? We go to UNM on Friday and back to Denver in about 3 weeks. Hopefully by then we will have a plan to either do another scope and biopsy of his gut...or better yet maybe by then things will have turned around. Mr. Pickle has a little bit of a cold that the doctors are watching closely. Apparently minor illnesses like colds can become raging and cause sepsis, which is infection of the blood, which can be very hard to treat. I don't really understand how that happens since his immune system is still not functioning fully, but for me it is more breath holding. Every morning I wait for Big D to emerge from his room so I can take his temperature and assess his symptoms. Another physical issue that is causing quite a bit of discomfort is a severely ingrown toenail. Remember that all of his nails fell off...well they fell off when the new nails were still only about halfway up the nail bed, so now that the new nails are beginning to grow more without the old nail on top they are becoming ingrown and seemingly infected. He was started on antibiotics yesterday, is doing Epsom salt soaks, and using triple antibiotic ointment...but like the cold this small infection can turn into something that requires hospitalization.
I am feeling a bit overwhelmed with worry. My brain tries to just deal with what is in front of me, which is a boy who needs constant care and attention, constant feeding and monitoring, and he is not always happy about all that extra attention :)) I am trying not to let my brain go to the scary "what if" place...the place where all of the worst case scenarios are played out. We don't want to prepare for the worst....but we have to be vigilant with noting all of these details and changes in preparation for what could suddenly be upon us.
We carry on day in and day out. Dillon is doing more school work and is more physically active (barring the pain in the toe). Last weekend Dillon and Luca's cousin came to visit from Dallas and they got to go swimming in the hotel pool. We went sledding on Sunday and he was SOOOOO crazy happy. He missed out on most of the activities of last summer and fall and he informed us that there was no way he was going to miss out on the entire winter too....so we headed up to the hill for some good old fashioned family fun.
It's very hard not to take the what if attitude. You've been on one heck of a ride and it's hard not to do the anticipation thing. I hope his cold is slight and he gets it knocked down to nothing in no time at all. Give yourself a hug would ya? It's tough being a mom on any given day but to have such an predicament thrown into the mix is really hard. More prayers being sent to you and yours...love ya Aunt Marilyn
ReplyDeleteThanks Aunt Marilyn. Your positive support always lifts my spirits.
DeleteHang in there Shari!! The transition has got to be taxing and a little scary... let us know if we can support you in any way since you are back. Lots of love!!
ReplyDeleteI completely understand trying to anticipate all of the what-ifs and the mind running amok with bad scenarios. I found myself having to take 5 minutes or so (usually as I lay in bed for the night) and finding as many good and happy things in my life as possible. Be it how good dinner was to being happy someone handed me something when I needed it. Tried to string together some positive emotions to get myself out of that other rutt.
ReplyDeleteReally look for those moments and revel in them. While you're happy, those bad things just aren't an issue.
Big hugs and live to you and the whole family. You've taken on a big monster. But monsters can be beaten too.
Jennifer, I love that idea!!! There are so so so many of those positives. We have all come so very far, even though some days it does not feel like it. No doubt this will be the hardest year of our lives but you are right...we are beating it!!. Thanks.
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