St. Jude – Answers

We were promised answers today…. We got them, But not the ones any of us wanted.

The day started off before 5 Am when Summer vomited in her bed. She was sharing the 2 queen bedroom with Angela and Nate…. I was on the pullout sofa in the living room of our TriDelta housing. about 5 Am I noticed the shuffling around as they were attempting to get her to the bathroom and clean her up.

Summer was yelling that her legs hurt and the bath was not going very well…. To make matters worse, TriDelta house is not really wheelchair friendly…. So Nate was doing some heavy lifting to get her moved around.

Ang and I remade her bed with new linens, but by the time she was dressed and ready, it was nearly 7Am. (I misspoke yesterday, her first appointment was 7 today. ) Seems like cruel and unusual punishment for a kid who has been sleeping till 11 or 12 the last few days.

Besides the squawking about her legs and the bath, Summer was now, not saying a word. This is a new thing that has been popping up. She told us on the trip that when this happens she can think of the words…. But they don’t come out of her mouth as she wants. We actually started hearing this from her the week before vacation. We would call her while she was with Nate and she didn’t make any sense whatsoever.  During the trip is happened a handful of times when we were done with a full day of activities.  

This silent treatment went on all through “labs” and when we got to E Clinic.

Nate and I caught up with Angela and Summer in the waiting room of E Clinic. Katie was squatted down in front of her asking Summer questions about where she was. Summer could not respond.

Katie took us back to the examination room and said that all scheduled events for the day were off. Getting her comfortable and out of this wheelchair was the #1 activity. A CT scan was now needed to see what was going on inside her brain.  They were making sure nothing was acute and bleeding to cause this.

Ultimately, the results came in through the MyChart Ap telling us that Summers “nodule” tumors have grown from 9mm to 11mm in the span of 3 weeks. Not just one, but many.

Katie said they were admitting her to the hospital. she has been conferring with Dr Gajjar, and he would be in soon.  “The cancer has made itself known”. I hate this term. Gajjar had said it a month ago and Katie said it today. It’s an easy way to say “Your cancer is back and it’s going to kill you”.

Gajjar sat down and we reviewed the chain of events and Summer’s symptoms. He cut to the chase and said we needed to be thinking about what we wanted to happen. (It was much better bedside manner than that sentence sounded.). Did we want to consider her options here at St Jude or try to get her to Peoria?  Since we want to get her home for friends and family to say goodbyes…. The bulk of the conversation focused on what needed to happen to get her to Peoria.

She has to be stable. Lucid answers when needed and pain-free for the most part without uncontrolled vomiting.  So far…. This afternoon…. That’s what we have on the 5th floor. A stable child.

The Quality of Life team came in and wanted to know more about our wishes and goals. We sat with them for an hour and finally came up with a plan.

I had watched “Tessa”, another St Jude patient just go through a similar journey and she spent her last days at OSF Hospice in North Peoria. Since we do not know any other facility, I pointed in that direction. The “quala 🐨“ team went to work to facilitate this transfer.

We had hopes that this trip could be used to stabilize Summer. But that is not to be. There is no medicine that will bring her back to a more normal state.

I cannot get the thought out of my head, but It’s almost as if we road her to the finish line with our trip over the past two weeks. And to her credit…. She never wanted to stop.  Her body, without her permission, has now decided to do the stopping.  

During the building of the ramp, Summer never left her room till 3 pm that day. Then, she sat with Nate and ate a little. (Actually, a lot as I remember) and then visited with my brothers, Dawn, and my folks.

The next day, Linda came by after church and spent some time chatting with her granddaughter on the couch. A bit later, Dan, Courtney and his whole slew of kids came over and we eventually pushed Summer down her ramp to take a look at the horses with the cousins.

Later I was talking about it with Summer and she said she didn’t recall Dan and the kids visiting! So weird because she had a great conversation.

Sunday night a bevy of friends from her DeeMack school showed up and owned our living room for several hours. This was a highlight for me. Seeing her friends come by to say hello and then watching them stick around was great.

Tonight, we made three calls with updates. Aiden, my Mom, and Angela’s Mom. That’s the extent of our phone tree during these times. So, don’t be offended if you are not in that top 3.

If, if, Summer can stay stabilized tonight…. She will get that ambulance ride to Peoria. We need this. I told Nate when we were headed downstairs for dinner that we need this last bit of luck. If we don’t get it…. A carload of grandparents and Stig will be headed south.  We will know more in 12 hours.  

I still have visions of “Bones” McCoy walking through the hospital and taking a look at Summer to ask what her malady is… only to say “What is this, the dark ages?” And hand her a pill with the cure for Medulloblastoma ala “Star Trek 3 – The Voyage Home”.

I know this post sounds pretty matter of fact…. It’s definitely got a Joe Friday kind of vibe. Angela, Nate, and I have gone through the Kleenex today. the realization that this battle is coming to an end and we are not ready for it.  Summer’s cancer is a bit of a soft landing.  She is just tired.   All day she rolls over, looks at you, and says “I’m soooo tired”.  She can perk up and will respond to nurses… But it is as if she is in a half-woken state.  I think her body mostly hurts from laying down all day… But other than that… She has not requested any painkillers.  She has, in the past, requested morphine when the pain was bad in her legs.  

The doctor put her on Dexamethasone tonight for bone aches.  It’s a very small dose but it should help her stay comfortable.  

She still cannot eat and has not held anything down all day.  One tater tot this evening lasted about 20 minutes.  We are getting quick at seeing the signs of regurgitation.  

Angela and Nate are staying over at the hospital tonight… I am going to try and get some sleep because I plan on having to follow an ambulance back to Peoria. 

Thank you for all the messages today.  They were good for the soul.