We’re back on the Hemoc Block and man it didn’t take long to be right back in the flow of things. Reya was in a very upbeat and super jovial mood. Getting through vitals and the draws was a breeze today. We got to see Allison and her Mom. They were in clinic but had plans to come up to Bone Marrow Unit to visit with us and Emily. They were excited to see Mireya discharged from the floor. Allison is doing really well. She just returned from a week long camp sponsored by Special Love and it sounded like a totally awesome time. They gave Mireya the most adorable and fluffly stuffed puppy. It’s so soft. We’ll have to figure out a name for him. We had a chance to catch up with one another. Mireya enjoyed time ‘playing’ with Allison. It was so sweet of her to hang out with Reya for a little while. ‘Fast Hands’ are good for basketball, but not when your rotating through pictures on your camera. I had taken a great picture of Mireya and Allison together and ‘accidentally’ deleted it. Will have to try again another time.
It was a long day. We were in the clinic for over eight hours. Reya needed a blood transfusion. She has built up some antibodies so the search was on for a comparable blood product. Once they located what was needed, took a little over three hours for the transfusion to complete. Always arrive at the clinic with your bag of tricks full of snacks, a blanket, activities, and anything else to pass the time away. I learned that after our very first appointment. Reya’s counts are a little lower than they were upon our release and she will require a new med to be administer via her line at home. There are a few other things to look out for with this infection to ensure it’s not GVHD (Graft vs Host Disease). Everything we are seeing is within the scope of expectation, rather things that ‘could’ occur throughout recovery.
Connor’s Heroes was here today and you all know how much I LOVE, LOVE, LOVE them. They are celebrating ‘Christmas in July’ and are handing out bags of really cool stuff for every child (patient, sibling(s) and friends) in the clinic today. I had a chance to talk with Lisa Spickler Goodwin (the Founder and Managing Director) about the positive impact and how much of a blessing Connor’s Heroes is to so many. It really does help to have someone or a group of someone’s that know and understand what it is like to endure the reality of ‘the diagnosis’ and all it takes to rally through treatment and recovery.
We’re back in rotation and will be in clinic every other day for check and balances, counts and whatever else is needed. We’re praying and thanking the Lord for increase in Mireya’s counts and continued increase in her health. Being at home has been a huge lift for her spirits. She is happy and even more vibrant. God is good and continues to show himself through the love and kindness of so many. We love and appreciate it all. Thank you!!!
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