3 years ago I wrote “How You Can Help Us and Other FAQ” for William’s cancer treatment at UNC. Today we are at Johns Hopkins in Baltimore for Jonathan. Sibling rivalry is alive and well.
We should have more information and a plan in place this week but for now we plan on staying in the ICU for 1 week, potentially 2. Currently we have the grandparents present and flexible plane tickets have been purchased.
I brought Jonathan to the ER for severe concussion symptoms, total loss of motor skill/balance and vomiting on Thursday. A CT scan showed blood pooling in the lower cerebellum area of the brain, which controls balance, involuntary functions like breathing, etc. This was NOT caused by bumps or a fall; something was in his brain for a while and hiding. Within a few hours he was flown by helicopter (which he enjoyed!) to Hopkins and was admitted to the trauma unit.
We now know what it ISN’T. It is not a malformation of a blood vein. His angiogram was done by the #1 pediatric expert in the nation. God is so good. There IS a mass under the blood pooling but what it is and the cause remain unclear. The blood will naturally dissipate and cycle and then we can see more. We do not know about surgery, schedules, etc.
We are okay for childcare for now, thanks to grandparents. We are cycling back and forth the 45 minutes so that William and Jonathan are never alone. William will resume school Monday.
WHAT YOU CAN DO YOU HELP:
We learned a LOT from our 6 month hospital stay with William, which has made this even seem less traumatic and even familiar.
MEALS: We are pro-food, as a rule. We don’t know when we will be home to receive it or when we can eat large meals. What IS helpful is to have small meals or ingredients that are easy to assemble or transport, like cooked meat that can be added to parts, like tacos, chicken on a bagged salad, etc. Bags of frozen veggies and even chicken nuggets for William help. Muffins, cookies, cereal bars, applesauce, veggie straws– all toddler items help us feed William and can be brought to the hospital.
EASIER/NOT LOCAL FRIENDS: Local supermarkets like Wegman’s and Amazon Pantry deliver to the door. Family members are NOT from here, so avoiding time to fight traffic and navigate for the grocery store is wonderful. I will post the usual constant needs so that a simple click will bring it to us and save the trip. Size 4-5 Pull Ups, toilet paper, “Clear and Dye-Free” laundry detergent and Clorox wipes are always helpful necessities.
**Food gift cards for Papa John’s Pizza, Jason’s Deli, Chick-Fil-A, or really any chain restaurant are VERY helpful.
BEING EVERYWHERE AT ONCE:
William may need care and loves to play with other kids and outside. He’s loved the attention! I can’t tell you how amazing their elementary school teachers and staff have been, and our church/military family have made sure he is never alone. Afternoon park trips may be helpful so that he doesn’t have to do round trips in the car as we switch out at the hospital. We will be SURE to ask when we need help.
TRAVEL and VISITORS:
We can only have 3 people in the ICU room at a time, so we need to space out visits. We are SO thankful for visits and when I am with William I am happy for company while I do laundry or dishes. We don’t know what schedules will be like for next week-October, so stay tuned. I will make a schedule for visitor windows at the hospital and here at the house.
We will be able to Facetime, but if your kids want to make cards or videos for him to watch, it would be a treat, especially at 1am. Just a short message or dance party video would be great and allow him to see faces.
THE HARDEST HELP TO ASK FOR:
God has blessed us with financial ability to pay for our immediate needs and has always provided where we fall short. Financial help is NOT our biggest stress right now, but for those who want to bless us that way may. We don’t want to say no to a blessing if you want to give it.
The hardest burden was driving to the hospital, parking costs and airfare. Gas cards, Military PX cards or Southwest vouchers are the most helpful financial helps. Others take off a percentage to use and we want to respect your gifts.
Again, THANK YOU for the incredible outpouring of love on all our family members. We are doing surprisingly well. Past trials have prepared us well. Our biggest goal is to glorify and honor Christ in all our circumstances and to raise our children well. Thank you for helping us to do that and to show them how we can be kind and love one another.