Honestly… Chemo is a much different affair now than when we started this process. So, any chemo towards the end of the treatment seems easier for a multitude of reasons. Time expectations and advocating for better times in the medicine room have made our last few months a lot easier. Summer has more energy with these last treatments and she can get out of Memphis every weekend. Something she promised she would do!
Today… We got into St. Jude for Summer to get re-accessed and get her labs started. The place was like grand central station. There were lots of new people and we ran into Holly… Our nurse guide from when we first started our journey at St. Jude. All I could think was that I hate for these kids to be here… But I am so happy we are clearing space for them. The word being spread around by the kids in Summer’s circle is that St. Jude is putting up families in the Sheridan Hotel a few blocks away. They are just waiting for us to move out!
While we were walking down the hall… I watched Summer veer right a couple of times. Then, when she had to get up quickly… I almost had to stop her from falling backward. I said, “I have to tell you… It’s amazing that you made it through the Dallas Airport all by yourself”. Summer laughed and started telling me stories about her trip. One was how she was nearly pushed out of the way by a woman at the airport when she made a misstep. “It’s gonna be like that?” was what she thought to herself.
Labs went long because of the crowds… That meant Summer missed PT with Terry.
Labs were taken and then we went straight over to Pschiatry. We were late for those as well… And this was mucking up plans. Summer had her young adult group at 10:30. I asked her what she was going to do if this meeting went long… She said she was gonna beg! The psychiatrist came out and said that Gigi was outside and asked Summer if she was OK with her joining the meeting. Summer said OK. The doctor left the waiting room for the hallway and I sat there for a second before asking Summer who Gigi was. Is it a dog? Summer laughed along with me that she was not sure… But she hoped so! “This is why you don’t give dogs, people names!” I said. “Butterscotch or Snickers would be much easier names to identify as an animal!”
We were running about 10 minutes late for pizza when Summer was released. I asked her if she had a good time with the dog. She was miffed that Gigi sat in the corner and didn’t even smell her shoes. Dogs. Not very reliable as therapists.
Summer had a coffee group with her young adult pals. What was advertised as breakfast pizza and coffee was actually Dominos and Cokes. I had a laugh with another parent when we both agreed that kids would rather have the latter. Then again, none of these kids have had Casey’s breakfast pizza.
I was camped out upstairs in the new level 2 family commons sending emails when she wrapped up. The next visit was a consult with the “team” after they had a chance to review Summer’s bloodwork. We sat at our own booth for an hour while we waited for the next appointment. Summer had brought me two slices of Dominos, so I called that lunch.
I have noticed over the last several months that I do not find myself in the lunchroom like I used to. The fascination with the all-you-can-eat lunchroom has worn off! It only took 8 months! After a decent breakfast at Target House… I can usually get by just fine with no lunch, especially when I know that a free supper is coming on Tuesday and Thursday nights. Tonight was traditional or chicken lasagna. It came with salad, fruit cups, garlic bread, and dessert cake! Seriously a lot of food.
We saw Katie, Dr. Gajjar, and Lindsey. In that order. Katie said she would check to see if Summer could get by with the smaller fluids “backpack” after chemo on Wednesday. Her counts were all good and the liver enzymes were in check. Dr. Gajjar came in and unlike the last 2 visits… He stuck around for a few minutes. He asked Summer how she was feeling and if she was excited. THIS chemo tomorrow is her LAST chemo for this treatment regimen.
It seems crazy to say it or even think about it. But she is that close.
I am not sure what to expect when the time comes… I told someone the other day… And I don’t think I am repeating myself here on the blog… I feel we are safer in here while she is getting treatment. There is no cancer boogyman when you are actively getting treatment. The treatment plan means you are living IN the process and there is nothing to fear. The release will bring great joy and new worries.
Summer and I had talked a little about the stages of cancer, and I am not sure what the source material was for the convo. I told her to ask Lindsey when she was in her consult. After checking her breathing, heartbeat, and numbers… Summer asked her about the classifications of cancer. What is a 3 vs a 4? Lindsey said it used to be a lot easier to pin a number on the type of cancer and the seriousness of the diagnosis. Her Medulloblastoma diagnosis can be a 4… Or a 3… But then she has the genetic amplifier… So it gets muddy. Ultimately, Lindsay said that the more information and treatment options they have… The harder those numbers are to place. Did it answer the question? Not sure!
Gajjar seemed very happy to see Summer in good health and spirits today. He’s a man of few words… But his body language told me he is anxious as well.
Last night, we arrived to find mail and a package waiting for us at Target House 1. Summer actually walked over with me to get it! Shocker! I didn’t know anything about it… But Summer was very aware of what was in the box. LOTS OF MAKEUP! Teen Cancer America has a program going on Wednesday night where they will have a makeup clinic at 6 PM. (Chemo is scheduled from 3 to 6!)
The box of makeup was chock full of brushes, sponges, mascaras, and more eye colors than a rainbow. Summer said there was a fortune in makeup in the box and she looked at every piece with giddy excitement. If that chemo runs long or she misses this ZOOM… She will kill someone!
A family vaca to South Dakota is shaping up. Not trying to jinx it. But everyone is on board.
If it works out… We will leave on Memorial Day weekend… One year from her diag.
On the way down, Summer and I were talking about Spring Break 2022. We had gone to Washington DC and had hit some SERIOUS mounds and earthworks. We climbed and ran up a lot of them where it was allowed. Summer told me that she had massive headaches every time her and Aiden started laughing hard. She also remembers those headaches that made it terribly hard to get up in the morning. An inspiration for many bad moods. I remember wondering if she was on drugs and was having withdrawal systems while stuck with us on the family trip! She was not quite herself and I probably should have noticed it sooner???
I look forward to an uneventful family trip in 2023!
Summer had a consult with the facial/nerve surgeon last week. While I was in Pekin at work, I hopped in and hear the conversation with the doctor, Summer, and Angela. There are a few ways to work on bringing some motion back to the right side of her face.
The big surgery, with lots of risk, lots of recovery time and the most movement is a tongue muscle and nerve relocation. 7 or 8 hours of surgery and nearly a year of time recovering as she learns how to retrain her facial actions. It’s not a fun thought.
The intermediate surgery tied a nerve near the back of her jaw in with her cheek. Every time she clenches her teeth… She will raise the right side of her mouth to level out a “smile”. The surgery is not as long and that’s a big plus as well when you are talking to a kid who has had two 8-hour surgeries in the last year.
This surgery will take place here in Memphis around June or July. I have no idea about room, board, or how long we will be in town for this. It’s all small potatoes compared to what we have been going through.
Marie made it back to the nursing home on Monday… She’ll do whatever it takes!!!