April 22, 2015
Today was Theo’s fifth blood transfusion and fourth platelet transfusion. He has now had 4 transfusions in 10 days.
We are thankful for many things. Theo has not had any allergic reactions. Theo has only spent 3 days in the hospital so far this month. Scott has only missed 3 days of work so far this month. Theo and I have been home in time for dinner every night. We receive dinners from our church several times a week. Our friends have been so faithful and available to take care of Tim and Cali. Grandmom shows up cheerfully morning after morning and doesn’t even blink when I tell her I’m headed back to CHOP. My parents drop everything to fill in any unexpected gap. We are grateful.
We also see why the staff took such time to prepare us for Phase 4. We are constantly on alert. I run 911 scenarios through my mind every morning and every night. We count the bruises on Theo’s body to try to determine which ones are new and which ones are old, which ones are from playing and which ones are spontaneous. We now know what petechia looks like. Petechia is red and purple bleeding spots under the skin caused by a low platelet count. Theo has petechia all over his chest and neck. We also know that when Theo starts crawling on the floor to get around that his red blood cells are getting too low. It’s intense.
I told Scott the other day I feel like we are Moses and you all are like Aaron and Hur. Moses was leading the Israelites in a battle against the Amalekites. Previously in Exodus God had given Moses a staff to carry as a physical reminder that God was with His people. God also used the staff as the vessel for miracles from Moses to the people. I can’t do the passage justice, here it is…
So Joshua fought the Amalekites as Moses had ordered, and Moses, Aaron and Hur went to the top of the hill. As long as Moses held up his hands, the Israelites were winning, but whenever he lowered his hands, the Amalekites were winning. When Moses’ hands grew tired, they took a stone and put it under him and he sat on it. Aaron and Hur held his hands up—one on one side, one on the other—so that his hands remained steady till sunset. So Joshua overcame the Amalekite army with the sword.
At this point Scott and I feel like we are the ones sitting on a stone and you all are holding our arms up so that we can defeat our present enemy. We are grateful for your prayers and we are hopeful that this battle is almost won.