I made the analogy the other day to someone on the phone and said I would probably use it here. (Max was it with you?) We have been on a playground slide since May of this year. Summer started in terrible shape at ground level and has climbed up to the top with her good health, but it will all come screaming back down as her strength and health are attacked by chemo treatments till next May. This is a vicious cycle.
Last night, she was pulling a little hair out around the scars on the back of her neck. It was a nervous laugh as she handed them to me in hopes of grossing me out… But I played along. I’m tough like that. Today, throughout our visit to St. Jude, she was pulling out more and more little strands and clumps. Her head itches so badly from the proton “burn” and she really doesn’t want to dig in and scratch it. But I know the temptation is there if she is talking about it. St Jude must have hair in every corner if you look hard.
We got back to the apartment about 5 today and she went to her room for a nap. About 90 minutes later I came in and found she was awake… She looked at her trashcan (placed between the twin beds in her room) and offered me a “Trash Pet”. I looked down at the decent-sized wadd of hair and said “No thanks!” I asked if she was pulling it out on purpose because she might want to use a comb for a balanced approach.
All the while… We are laughing… Very restrained and nervous. But we are trying to keep it light.
I wonder now if I am ambushing my sister and parents over the next two weeks… Her stress level is rising but her energy seems good. When those go opposite directions, hold on!
She did say that I might be the only person who would laugh along with her on this. She then said she knows where she got her sense of humor. I’m not taking credit for it, but I will hang in there with her while things get ugly.
Today I got a package of Pop Tarts in her for breakfast. Lunch was Kinde Bar with coconut. It seems to be the only granola bar she will eat without complaing. Some Pineapple, cookies and a brownie finished the day off for dinner. It’s not great… But It’s what worked today. Tomorrow we are doing dinner with Steve and Lisa. We very well could go back to Tugs!
Summer has not been sleeping well, I told her to take some Benedryl since our first appointment is not till 10 AM.
Today, our appointments were completely messed up. We had been set to be there at 8:30 for Chemo. Once we got checked in and set down near the Medicine Room… The nurse called and said they changed the appointment to 10:30. Ugh. Go back to Target House or sit at St. Jude? We got Starbucks and sat on a couch for 90 minutes. She was not hungry at that time for lunch, so we sat on some more chairs and prayed to get in early for Radiation. No luck (We never learn). 2 hours of waiting and competing on the Wordscapes Ap before treatment. As usual, Summer was released at about 4:15. We grabbed some food from Kay Cafe to take back to Target House.
There was a nice box of headbands in the mail today. I will steal a few pictures tomorrow while she has her mane. It WILL be growing back next year, but for now, we will enjoy the last days of this head of hair.
One last fundraiser for St. Jude this weekend… Todd and Darla’s Son, Carson, has had a lemonade stand fundraiser every year and this year is his last one. He’s a 10-year survivor. He added Summer and some other local St Jude kids (Like Reed Fry) onto his fundraising shirt this year. I hope I am back in town this Saturday to visit all the stands if possible and celebrate his accomplishment.
I believe the Kroger in Pekin will be home base.
Here is a link to the fundraiser. Lemonade Raid 2022
4 thoughts on “St. Jude – Reality checks in”
Summer, I am praying for you every day. Love you so much, Grandma Linda.
Hi we are praying for you both and thinking of you
Summer, I have never met you but I know your Dad. I’m sure you know there are so many people pulling for you – so many you have never met and probably never will, supporting you, praying for you. I am a registered nurse and I work independently helping people getting over and through different issues. I have worked with countless survivors of all kinds of difficult diagnosis. I can tell you this and it will sound weird at first. When you beat this you will always feel; “I sure wouldn’t want to go through it again, but I wouldn’t change anything about it because of the person I have become through it.” No one – not even your Dad will ever know what you have truly been through. The things you will do with your life after beating this will never be ordinary. They will always be extraordinary. In our thoughts daily and sending good vibes your way every day.
You’ve always been one of my favorite people Joe… Thanks for the kind words. She DOES read them all.
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