St. Jude – Final Diagnosis

I don’t know where to start on this one.  This is not the news any of us wanted.

Wednesday, Summer had her MRI earlier in the day than scheduled.  That was a win as far as we were concerned.  Afterward, we met with an anesthesiologist that we thought was for her upcoming facial nerve appointment.  In a V8 moment, we all slapped our heads…  This was just a conversation about the lumbar puncture scheduled for the next day.  Duh.

We were out of the hospital and back to Target House knowing that Summer could get one decent meal in before her fast for the LP the next day.  The decision was made to run over to Panera.  The girls ordered the soup they love and I ordered some HattieB’s from around the corner on their app while we waited. 

The wait was long enough for the food that Summer and Angela sat in some chairs while I stood off to the side.  About 5 minutes into the “wait” I heard a yelp and a whimper.  It was Summer.  She was crying and Angela was reading her phone.  I naively believed there must be another tragedy hitting someone else because nothing should have been on our radar.  Angela handed me the phone, it was open to the St. Jude Ap and her MRI results from today.  The MRI tech had made a determination that cancer was now present in her brain and spine.  There was a note that he had talked to Dr. Gajjar after the scan.  That was at 6:15.  It was now about 6:30.  I was then on my knees next to Summer holding on to her while Angela and her were still embraced in the chairs.  This went on for a few minutes.

My response in the face of this uncertainty was to say that we cannot panic about this until we talk to Gajjar.  The information was vague.  Were these tumors or just spots?  They did note one of the affected areas being 4mm.

Thursday we had a dietary consult setup for first thing in the brain clinic.  Ang and I were running around doing a couple of different things in the hospital, but we both knew we should be in the brain clinic in case Dr. Gajjar popped in while we were there.  That’s exactly what happened.  Dietary never happened.  The nurse took us back to the imaging room and said Doc would be in to talk to us about the MRI.  When he arrived, his tone, as you would expect, was somber.  He asked if we had seen the results.  First thing he did was apologize that this was submitted to her app without any kind of gatekeeping.  Summer is an adult, so she has access to her medical records and results before we do.  A bit of a change from most of the patients at St. Jude.  Little kids only know what their parents tell them.  Summer, as I said, knows everything better than and before us.

About 10 images from her first scan at admittance up to the most recent were placed on the giant screens.  Unlike the previous MRI that showed a few “dots”…  These new ones didn’t really show me anything.  I was expecting a bunch of round or bumpy “tumors.”  Gajjar then started pointing out grey areas over the black ventricles and open spinal areas that were a “glazing” (my word, not his) of tumor material growing nearly everywhere that it could.

I need to tell you that Summer was a rock during this conversation.  She’s so damn strong.

We asked a million questions.  He answered them twice over.  That’s about how long it took for us 3 to understand what options Summer has.  Doctor told us to cool off and see him on Friday when we decided how we wanted to proceed.  We didn’t let him out of the room that easy.  We needed more information on what to expect.  What were these treatments?  And, the million-dollar question…  How long does she have?

He made sure to let us know that there is no way to be sure.  But, the best guess was that Summer may have 6 more months to live.  I believe that was untreated.  Some “Treatment” could manage pain and give her a little more time, but nothing can be guaranteed.

The immediate decisions were this.  Take a few weeks off.  Summers counts were “ok” but nothing stellar.  She is too weak to introduce more treatments right now.  Go ahead and check out of Target House.  Go home, and get some rest…  Whatever.  Take a vacation.  He was fine with it.  Summer and Doctor did a verbal rundown of her meds.  He told her everything she should continue and quit taking.

Summer can come back in a few weeks and we will give her an IV program to “maintain” normalcy as long as possible.  We should have a few of these and hopefully, they are one-day trips.   We talked about Peoria as an option.  But Dr. said that pediatrics and adults can sometimes get messy at the affiliated hospital.  He would administer the first one in Memphis and we can talk to Peoria afterward.

We did ask EVERYTHING!  Can we get a second opinion?  What about other drugs?  What about treatments at other hospitals?  Why do other kids get gene treatments or drugs to hold their tumors at bay?

Doctor Gajjar answered everything.

We could chase and run all over the country to try and extend Summer’s life in another hospital.  But he has had too many bad experiences with kids ending up in ER’s a long way from home in their last days.  He would not stand in our way, but he made sure to illustrate how horrible that scenario would be.

How come other kids get other treatments to stabilize?  The treatments for some of our other friends who are at St. Jude are ongoing after they relapsed because they had years between treatment and relapse.  Summer is physically too weak to go into another series of chemo treatments.

Diet or therapies we have heard about online?  Believe me, Angela and I have been googling like crazy since the MRI results.  There are a lot of people advertising KETO and sugar-free diets as a way to stop tumor growth.  He dispelled these as solutions for Summer’s immediate concern.  She can barely eat as it is right now and this kind of diet would not help extend her life.

The doctor said that we would not need to search out cures for Summer… They would find their way to us.  He is right.  I have had countless solicitations on Instagram and Facebook talking about special drinks and oils that will stop cancer growth.

In the end…  Doctor said it best.  “Summer did all the hard work.  She did everything we asked.  But this cancer is damn tough.”

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One thing that we noted in the conversation with Doctor was that Summer was having some vision problems as of late.  Especially with her right eye.  A quick eye exam was set up.  Everything in her eyes looks normal.  The consensus was that this could be part of the aggressive tumor expansion.  The material could be affecting the optic nerves as it wraps in the back of her head.

While we were away in optical, we did talk about the best steps forward.  We ended up back in Brain Tumor Clinic and Summer agreed that the IV treatment would be fine with her.

Angela, while this was all going on had made sure that a time was set aside for the chaplain to see Summer.  I cannot remember her name (I am terrible!) but Summer has spent many hours over our time here visiting with her.  I was there for one of them while she was bedridden during heavy chemo.  Summer ended up spending over an hour with her on Thursday afternoon.

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Thursday night we got back to Target House for their dinner.  It was a chicken or beef po-boy.  Honestly…  They were sad.  It was decided that we needed something a bit more celebratory or something.  We were leaving on Friday regardless.  That’s a win!  Summer’s facial surgery was now canceled.   She actually said, “Good”.  This girl has seen some surgeries, so I know she was not looking forward to it all.  (Silver linings when we can find them?)  That was 2 small wins.

We ran over to TacoNganos and picked up a half dozen assorted tacos.  Summer ate half of one…  Gave me that look…  I asked if she needed a “bag”?  She said “No” and made it to the bathroom in time.  She came back and ate the other half.  Laughing a bit about the fact she made room for the second half.  It stayed down.

During dinner, we talked a lot about how to escape for a while and where to go.  I did find some last-minute deals in various parts of Europe.  I can do that!  But, as Angela pointed out…  Summer’s balance is bad and maybe getting worse.  Her vision is definitely getting worse.   We do not need to be around the world if she has a problem.

Our road trip out west that I talked about 2 weeks ago may be just perfect if we do it soon.

The sucky part about timing.  Aiden has finals till the 24th.  We are really hoping he can get down here that day and we hit the road the next day.  We would love to do it sooner… But he HAS to complete his finals.

More details on the trip as we make sure Nate and Aiden are good.

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Thursday night, Summer had some gelato and we all watched a movie together.  All three of us snuggled on the couch.  Summer was zonked out next to me for the last hour.

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Friday morning we got Summer to one last psychology appointment.  We came back and went through the madness of unpacking the final bits of the apartment.  OMG.  When it was all done, a Target House staffer has to come through and sign off.  The girl who did it thanked Angela for how clean it was.  Thats Angela.  If you know her… You know she’s a fanatic with a mop like Tim is with a vacuum.

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Tonight we dropped Summer off at Nate’s apartment.  His graduation from SIUC is at 9 AM!!!  We have a hotel tonight in Mt Vernon and will be at the graduation as well.

Nate and his family have been awesome during all of this.  I will probably need to take some tissues to get through the day.

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Thanks for sticking with this one if you got to the end.  I have so much more I could say… Or that I am thinking.  But, this is not the place.   Ang and I talked on the way to Mt. Vernon about how hard this will be next week at work.  I almost want to cover my office windows with paper and hide.  She said she had thought the same thing for her office.  She has a bodyguard.  I don’t have that luxury.

Angela has been talking to her co-workers and I had a call of support from Pat Fort today.  I hope you never have to know this reality where you need these affirmations.  We cannot express our gratitude for the support of our employers along with our family and friends.

This is not the last blog.

By God…  We are getting more Jr. Ranger Badges and she still has more Pokemon Go to grab across this country.  Oh, and she wants to make sure Nate has a Peroshki in Seattle.  Also, she’s got Bonaroo tickets in June and I think she bought tickets for Sum 21 and the Offspring in August.  (She bought those last ones today on cheap ticket day???)

Ambitious?  Yes.  But she’s not done.  Neither are we.  Whatever you need kiddo!