Henry's scans and tests yesterday came back negative. We're thankful for small favors. This was some good news in the midst of this nasty mucositis. Henry's morphine drip has been increased again several times and much of the time now he's asleep or glassy eyed. Nobody likes to see their child glazed over from medication, it's far better, however, than being in pain.
At times when the pain overtakes the medication, Henry cries and is angry. "Daddy, I'm not feelin' good." He grunts to display his frustration over it. I can see him clenching his body as his scalp reddens, his temperature increases, his blood pressure goes up, and his heart rate tops 200 beats a minute. The first time I see this any given day, my heart rate follows in kind. I begin to be a bit more calm as the pattern repeats, but there's nothing really relieving about that.
Despite this, Henry still performs his 'jobs' for the nurse, helping her with vital signs. Overnight when he was getting his blood drawn for labs, the nurse was fumbling in the dark trying to reach his tubes amidst the many lines running into him. All on his own he lifted his blankies to ease her search. It was such a kind thing to do for him to notice her needs when he is in such pain. So he gets angry, so he is frustrated, but that was real character.
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We check Henry's Challenge several times a week to keep updated. I let the girls know, in general terms, what is happening and how Henry is coming along. They have told their classes to remember Henry in their morning prayers, and the kindergarten students in my room have prayed for Henry daily. Please know we are all thinking and praying for Henry, and not only Henry, but Sofie, Anna, and both of you especially.
We're very proud of you Henry! We're hoping that you start feeling better each and every day. Tara and Bryan you are doing an amazing job!
Julie, Brad, Patrick, Andrew & Samantha
Henry learned his character from his family. You and Tara are fantastic role models, along with Anna and Sophie.
nance
Yes, Henry gets his "character" from his parents and boy does it show. What a little man!
I am sooo very sorry you have to watch your little guy suffer so.
You are both amazing. Anna and Sophie are being so strong too as I know they are very worried about their little brother.
Our prayers are with you as we look daily for updates on Henry.
So glad the scans and tests came back negative!! Thank you God!
With Love,
Cousin Susan H.
such sweetness...such bravery...such goodness. This little guy continues to be a hero.
Susan K
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