He establishes our steps
Journal Entry by Dianna Schaller — 1 hour ago
Making treats with granny while dad is the IV pole
Playing with his cars while he waits for his blood draw
Helping put together a riding toy for the clinic
Testing out the new riding toy
Playing air soccer
Hi all! I went to type in “good morning” and realized it is already after noon Wow, I just realized I have lots to update you all on.
Last Friday we got the IV medicine all straightened out with home care (with the help of an amazing social worker), so we were able to get the teaching, the medicine and supplies and then head home! Jedi was feeling well, so he made treats with his granny for his hospital staff that evening. On Saturday we had to return for a blood draw to check his kidney function. Praise the Lord that number was coming down! Unfortunately, his CMV level was still up, so we continue on the IV medicine twice daily and need to add the CMV specific IVIG. Plans for chemo were set for Monday as it had been three weeks since his last round.
We had a great weekend with our isolation family. We got lots of baby snuggles. Jedi got to ride his ATV and even play spike ball.
Today we arrived to the clinic with the plan to get chemo, head home and return tomorrow and Wednesday in clinic. I knew something was going on when the doctor didn’t come in right away. Sure enough the IV medicines he is on can cause neutropenia and his ANC is 0.5; too low to give chemo. Jedi’s doctor spent a great deal of time on the phone to determine and then coordinate our next steps. Today Jedi is receiving the IVIG, and we are praying so hard that he does not have the negative side effects he did last time. In addition, the doctors collectively decided that a switch of IV medicine (that doesn’t cause bone marrow suppression) was in order. The new medicine can be very hard on the kidneys so we will likely need to give IV fluids prior to each dose (every 12 hours). Also, the medicine needs to be ordered and won’t be here until tomorrow, so we get to go home tonight. Tomorrow afternoon we will be admitted to the hospital to start the new medication and we are praying his ANC goes up so we can start chemo on Wednesday. There is a possibility of home infusion with this new medication, but it will again take time to coordinate. We will likely be in the hospital until Friday.
Jedi is in good spirits. He is really embracing the “go with the flow” attitude today, so I am extremely grateful for that!
This weekend I was reflecting on what round number of chemo we were supposed to start today. I realized it was #8! It’s crazy to think that we started out this journey planning, hoping and praying for three rounds of chemo, remission and then bone marrow transplant. We have gone through a lot of ups and downs, twists and turns since then. All of this change is a good reminder that “In their hearts humans plan their course, but the Lord establishes their steps.”
Proverbs 16:9.
As we once again navigate a change in treatment (and staying back in the hospital) we rest in the fact that the Lord promises His plans for us are good! “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”
Jeremiah 29:11
Thank you all for praying for Jedi and our family. We wouldn’t want to take this journey without you...thanks to the Lord for bringing (and keeping) you into our lives!