St Jude – Close

The last 2 days have been a smattering of appointments of all types.  Today, we had some back and forth about Summer’s MRI schedule.  First, it was 5:45, then part of it was canceled, then it was back in…  At 4! 

Other than hospital news, Summer knocked out her college final on Tuesday afternoon from her Target House bed while we paced outside her door for dinner.  She was exhausted from a long day at the clinic but was focused on getting school done for the year.

Today we were bouncing all over different areas of the hospital when we had a chance to stop by the salon on the 2nd-floor commons.  Summer doesn’t have a lot of hair to worry about but she wanted it tidied up before Nate’s graduation this weekend.  She got some lines fixed and the nail salon did an amazing job with the color and design.  That was a win since we were a walk-in.  Its nearly impossible to get a timely appointment in the salon.  Luck was on our side today.

While Summer was in the salon, Ang and I were begged/shamed to join the parents and caregiver group happening on the 2nd floor down the hall from the salon.  The social workers who were doing this presented it as a resource for folks who need help “working” the St. Jude system.  We sat down with 3 other parents and did an AA-like introduction.  “Hello, my name is Eric Stahl, and my daughter was diagnosed with Medulloblastoma”.  It was a bit surreal.  I did tell them that we are guilty of having a massive support system with my family and friends.  Unlike other folks here, we have rotated our family and friends to keep Summer from being “bored” or sucked down too deep into the therapy.

I WISH we would have had this group when we started.  I feel like some of the restrictions they are pulling daily from COVID are showing us what St. Jude and Target House were before the pandemic.  It looks better and better every day.  For example, I can get my own coffee in the mornings now without a gloved staffer doing it for me.   They now serve dinner to families in the common area. On Tuesday, and they were allowed to eat in the dining hall!  This morning, breakfast was served in that same dining hall. I’m so happy.

It’s a bizarre twist that we should witness these changes when we are so close to ending our tour.

Ultimately, we had to leave the support group early to catch Summer’s MRI time change.  I felt bad.  There was a Mom from New York State who was there in a similar situation.  Rough diagnosis at her hometown hospital only to get to Dr. Klimo and St. Jude for a redo and regimen to save her son.  She has been here 2 weeks.  They are living in temporary housing on the St. Jude campus called Tri-Delta.  That feels like a million years ago since we experienced her fear.  But it hasn’t even been a year.  A lot will change for them in the coming months as it did for us.

Blood was taken today and Summer’s lumbar fluid will be tested tomorrow.  I am not sure what time we see Gajjar and the team.  But the results from the MRI and LP will tell us everything we need to know about exit plans. 

That can’t come soon enough.  Angela removed almost everything from the apartment…  Including blankets.  Last night I was shivering through my bed sheets.  When I got up at 2:30 to see what the thermostat was at… It said 65 degrees.  I kicked it up to 67 and put on more clothes to sleep in.  When Summer woke up this morning, the first thing she said was “I was soooo hot last night!”

It’s a no-win.

She could give up a blanket?  Then cool down?  I could take that blanket and stay warm.

Too logical Eric!  Not gonna happen!

More news tomorrow.