St Jude – Stoic

After dropping Summer off in Carbondale last week…  We were back to normal business back home.  Angela is steadily organizing all the items collected in the Memphis apartment.  (Glad that’s her chore!)  I was happy to deal with the lawn and making dinner most nights.  I forgot to shut off the Hello Fresh deliveries and we have a fridge full of meals!  (They are shut off now!)

During the week, Angela, Summer, and I have been talking on the phone.  Most of the time, our calls are checking on her and continuing to make plans for our trip out of town.   During a couple of these calls, Summer has sounded a bit incoherent.  Angela said one day she couldn’t understand her at all.  When I talked to her on Thursday, she said is “annoyingly tired all the time”.    After this buildup, you can be sure we were anxious to see how she was doing when we went to Decatur on Saturday for Nate’s graduation party with his family.

When we arrived at Nate’s Dads house, fashionably late, Summer was on a lawn chair by the kids playhouse, sitting in the sun.  We showed up in the Fort’s Sprinter/Camper (test run) and she got up to check it out.   I used the auto-leveling system and the power slide-out to give it the full “show”. Immediately, it was obvious that her balance is worse than before.  The cane that has been so useful over the past few weeks is not enough to keep balance.  We held onto her as she walked and got in and out of the camper.  I was listening to her speak, and she was sounding fine.  That was a good sign.

A little later, Summer was eating from the smorgasbord of food on the sofa swing with Nate.  Everything was looking pretty normal.

After that, Summer went inside and I did not see her for a bit.  Nate said she was taking a nap.  That was fine.  My sister and her son were there along with my parents.  We had lots of new faces to visit with.  Chris gave us a tour of his garages.

I think I am better off having only 2 buildings for “stuff”.  More garages collect more “Stuff”!  But, we did find a nice walker/wheelchair combo that he has been saving in one of the garages.  It was like new and was in a racecar red.  We are borrowing it for Summer when we need something for her to use in our house if she needs help getting back and forth to the kitchen or bathroom while her balance is out of whack. 

We were having a good time and I asked Nate a little later if Summer was awake.  I knew he had been checking on her.  He said she was not feeling well, so she was staying inside.  About an hour later I asked again and he said she was still feeling ill.  I told Angela she may want to check the situation to see what we need to do.  Angela came back a few minutes later with “the look”.  She gave me about 5 minutes notice that we needed to head out.  Summer was not keeping anything down and was very groggy.

I put the camper back together and we got on the road pretty quickly.   The Fort’s camper they are graciously offering for us to use in a Sprinter van with a Winnebago box on the back.  It’s pretty big, but it’s not huge.  We were a bit worried that the seating for 5 people would not work well on a trip.  This amount of passengers was the most we have had so far.  We had my parents and Summer in the back while Angela and I were upfront.  During the drive, I moved the back and sat at the table with my folks while Summer lay down on the couch at the rear.  I think the reviews were unanimous…  Use this camper.

Once home,  I helped Summer back to the house.  She was a mess.  She told me that her balance was previously 75%… And was now around 35%.  That’s a big drop.  Once inside, we got Summer to bed… But she was still sick.  She said with a bucket and couldn’t even keep water down.  I sat with her for an hour or so and we talked about her condition.  She also said that there was a day last week when she could think of the words to say while talking… But her mouth could not do it.

Earlier in the week, I emailed Dr. Gajjar to let him know we had some concerns about Summer’s current condition.  She had also been complaining of headaches and pain when talking to Angela.  Gajjar and I agreed that we would wait until Saturday when we saw her face to face to make a judgment on her condition.  After everything I was seeing…  I knew that a trip starting this Wednesday or Thursday was not realistic.  I asked Summer if she thought she could handle a road trip right now… She said she claw her way across the US, but it would not be pretty.  She agreed, not quickly, that a week or two on the road might be a bit much for her right now.

My biggest fear would be that she can’t keep anything down and dehydrates somewhere in the middle of nowhere.  I have the nightmare scenario of her in an emergency room and Angela and I explaining to doctors that we thought this would be a good idea.

I sent the additional info to Gajjar and he responded at 1 AM…  Let’s get her to Memphis and “stabilize her” before our trip.

So, that’s where we are right now.   Memphis.  We worked to get some more chores done around the house and returned the camper to Fort’s for 2 new tires before we take off later this week.  Aiden is out of school on Tuesday and Nate was ready to come up to our house on Monday.  We are lining up the odds and ends.  We just need to get the main character in this show in better condition.

In reality, we have no idea what they are going to do to “stabilize her” this week.  We are hoping for a lot.

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I talked about Bonaroo and those premium tickets in the last post.  Bonaroo did get back to me and they can upgrade her tickets… But I am not 50% certain that she is making that show right now.  We are in a holding pattern.  Once we know…  We will move forward.

And that’s what really sucks.  We are literally talking about a concert day that’s just a few weeks away.  And we don’t know if she can do it.   I told Chad at work this week that we are only 6 days out of St Jude with worrisome problems… And we were planning for 6 months.  He talked about his Dad’s cancer and how his system had a bad reaction when he was taken out of the hospital and removed from some of the drugs.  I have been hoping this might be whats going on with Summer as well.

She is going if she can.  We are upgrading if she goes!  But we will not know for sure until we visit with the doctors this week.

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Tonight on the way to Memphis, Summer asked me if we wanted her games at the apartment.  I am profoundly shocked at how casual this conversation went.  She joked that this was all she really could “will”.   Oh, that and her records.   I told her that Nate could keep any of the games he wants.  I asked her about her “Magic” cards and she laughed.  She said they merged those cards a long time ago… She has no idea what cards are hers.   The records…  Yeesh…  I feel like I should grab some of those, especially the ones she got over the last year while at St. Jude.

This sucks.  Cancer sucks.  Talking to your 21-year-old about this is something no one should ever have to do.

We were sitting at the park bench with Nate’s family before we took off…  Dad said he sometimes thought I shared too much, but this blog has been about “right” in the amount of information and personal feelings shared.  (This is getting into the meta with me posting about our conversation on the blog we were talking about!).  I told him/them that as a parent… You are not allowed to “lose your shit” or write what you really feel in a blog… Because, I think, there is a responsibility to hold yourself together for your child.  It’s also more important with a grown child.

If Summer were under 10… I could probably write whatever I wanted on this page. I could definitely scream my lungs out and let the world know how angry I am.  But, that’s not what is needed right now.

For now, I will be stoic.

We have short and long-term goals.  She has a crappy and uncertain diagnosis.  We need to make the best of every day.

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In case someone who saw me at Menards today thinks I was ignoring them…  I was avoiding you.

Before we could leave for Memphis today, Angela and I were grabbing some spark plugs for the garden truck, and carpenter bee traps, and she wanted to look at bathroom vanity lights.  I am not in the mood to “browse” for anything right now.  I was just feeling pissy.  Like a child, I stamped off toward automotive and saw a great guy walking nearby.  I honestly did not want to get into the conversation…  “How’s Summer?”  I turned toward another aisle to avoid him.

Sorry… Knowing that we were hours from heading back to St. Jude, I did not have the emotional energy for that conversation and just went to go hide.  Thats what it boils down to.

I was anxious all day and am still worried that our plans this week will get shut down.

This morning, with all three of us in her room, we talked to Summer about what the alternatives are.  1.  We don’t go to St. Jude and we don’t get 2 days from home before we have to turn around.  2.  We come to St. Jude and they tell us something terrible…  And we never leave Memphis.

I need lots of prayers for #3.  We get blood tests and then figure out what it’s going to take to stabilize Summer so we can have a few uneventful weeks.

We joked on the drive down that she needs a super serum…  Poke the needle in her leg… Give her 2 hours of energy… Then she can fall to pieces for the other 22 hours of the day.  That would actually be an acceptable deal right now!

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I am happy that people want to share ideas to help Summer out with treatment.  Summer and I talked about it earlier this week, she is an adult and I want her to be part of this.  We have limited time to get her to some of her goals, and let’s not forget the time she wants to spend with Nate and Geno.  We came to St. Jude for the best doctors to get Summer through this.  Contacting other clinics or doctors at this point is not going to be the best use of any of our time.  Every day matters more than the last.

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Lastly.  Showers are great places to cry.  Seriously, way better than when you are in the car by yourself.