Finding a Balance...

I have started a blog several times the past few weeks with detailed medical updates but haven't gotten through any of them to finish. Most of the time, I have been falling asleep at night when Sam does leaving little time to get anything done before the hustle and bustle of the morning begins. The previous "unfinished" blogs shared that Sam's EBV numbers dropped briefly, but have now risen again. We have started a SLOOOW steroid taper which is great in the long run, but also has some "fun" behavioral side effects currently. Hoping we can get through this taper with blood counts holding steady and not another colitis "flare up" so that we are off them for good in a month or two! Sam's G-tube needs to be "changed out" and we are trying to find the best way to get this done without putting her under anesthesia, while also avoiding a painful and traumatic experience. She is due for IVIG this next week which means a looong clinic visit which I'm not looking forward to, especially after this past week's visit which was full of hospital trials and tribulations/miscommunications and a nice dose of BS:)

 As Sam and I left to drive home at 5:45pm this past Monday both covered and smelling of vomit (yes she still does this frequently and almost every week during her dressing change:), I was feeling a little "beat down." I had started to mentally "organize" and "pack" for Kaeden and Brandon to go to Myrtle Beach SC this next week after  Brandon has been in NYC for work this past week as well. Although I am SO happy Kaeden and Brandon will spend some awesome quality time together on the beach, I started to feel the bitterness creep in that Sam and I can't go. After Sam and I got home this past Monday night (after sitting in Cubs game traffic:), I went onto the FB page that I joined shortly after Sam's diagnosis to ask the other Mom's in the group (whom all have kids with Severe Aplastic Anemia) how long post-transplant did their children need/receive IVIG. I hadn't been on the group's page in awhile so I started checking some of the most recent postings. My heart immediately sank. There were three stories that brought tears to my eyes and made me feel like all the life had been sucked out of me at the same time. The first story was about a girl who had a transplant a few weeks after Sam. She was just re-admitted to the hospital to battle pneumonia and a fungal infection in her lungs.... NOT what you want! The second was a posting from a parent sitting at her daughter's gravestone with her other two children honoring six months since she passed away 150 days post-transplant. The last story was another child being remembered by her parents and family after passing away one year post transplant due to severe GVHD that infected her organs and lungs.

The vomit on the clothes, hospital challenges, and missed vacations/outings suddenly felt so trivial. Our little girl is HERE! She is now walking, talking, and eating again. She has FUN every single day and is full of energy. This is what I decided I needed to share this week instead. One is always told it is never a great idea to "compare" your children to others while growing up, but sometimes I have to disagree with this. Sometimes you have to be reminded to be thankful and unfortunately sometimes that happens most clearly when you know others are hurting more than you. Although I don't know any of those before-mentioned families personally, my heart breaks for each and every one of them. After fighting SO hard, to lose this battle now or anytime in the future usually seems impossible most days, but I know it's not. Whether we are post 100 days after transplant or two years post transplant, I truly hope that we can find a balance of knowing there will always be health risks and fear, but not allowing this fear to stop us from having fun! Whether that fun is always in our home or an almost empty park... OR someday on a crowded beach ALL together, we WILL find a way to laugh, smile and LOVE! We owe to all the other families who no longer have that chance. We owe it to Sam.