I finished off my week with Summer in Memphis with the big “near” bang at Arby’s and headed back to Illinois. I left Angela to settle in for a week of regular therapy visits and consults like the good ole days at St. Jude. I say good old days because the version of radiation and chemotherapy we were doing a few months ago seems like a cakewalk compared to our regime now.
Summer had the full gambit of appointments with all of her therapists. When we were doing them before… They seemed easy. Now, with the rebuilding of her blood, we find walking all over and these visits a bit more tediousl. Summer said that she told her Physical Therapist she “just couldn’t do it” when he asked her to do some balancing or squats. I believe his name is Terry. Super nice guy, but Summer felt like she was letting him down.
Later in the week Summer met up with the plastic surgeon and got some good news.
I will remind you of Summer’s partial facial paralysis for those who don’t know about it. When we take pictures and she had a snide or pained look… It’s because her facial muscles on the right side have been damaged by her first surgery at CARLE. This was a known possibility before she entered surgery. We were never in a position to ask for a second opinion because of the severity of Summer’s condition so we will never know if this could have been avoided. I have done the research afterward, there are tons of other kids with the same condition post-surgery. Its sad in some ways… But it’s also a testament to some super tough kids when you see them trying to keep it normal with a crooked smile.
That said, it’s got to be rough to know your smile is jacked forever.
The good news is that the cosmetic surgeon (sorry, I don’t know his name, but I think he works with Dr. Klimo) took a look at Summer’s condition and said “I can fix this”. He said with surgery after her chemo is done, he will remove some leg muscle (her poor legs!) and tie the segment from her ear to her mouth that will be nearly undetectable to those who don’t know what they are looking for. He did emphasize that Summer needs to keep doing her speech therapy and PT to keep her muscles from atrophying. Easier said than done, but we will keep pushing!
On the downside of events at St. Jude last week… Summer told me that her friend from the young adult support group (I always screw up this name… The program is called “Child Life” and “Teen Life” for the younger kids) had her tumor come back in her spine… And she lost her battle. This same girl was 1 room removed from us when we were in acute care 2 weeks ago. We knew that she was in a bad shape and Summer felt bad that she did not spend time with her while so close and suffering. Heather, the counselor for “Child Life”, when she did her rounds to our room, reassured Summer that her friend was surrounded by the people in her life that mattered most. She was not without love and affection.
It was another somber reminder of where we are.
After that, we talked and I apologized to offer consolation, Summer then told me another one of her friends was gone as well. I was like “oh no, someone else died?” She said, “No dummy… Beth, my friend who visited us last week went home. She won’t be at any of the sessions”. I was a bit relieved and told Summer that she has to be far more clear when saying someone is “gone”. My emotions are tilting toward worst-case scenarios at this point.
Angela dropped Summer off in Carbondale last Friday. Sadly, Nate was back home for his wisdom teeth. Summer spent the weekend with her old roommate “Z” and Geno the cat. She reported that Geno is no longer “cute” and has been ruined by the boys! I think he is now a fighter instead of a lover.
I am thrilled to report that my sister Sylvia has stepped into service duty to help out.
Sylvia picked up Summer in Carbondale on Sunday and took her back to Memphis. This week, Summer will have a few days of normal PT and office visits before she has to go back to acute care at St. Jude for her next chemo treatment. That happens Wednesday. Sylvia is ready for the air mattress, we talked tonight and she said no problem. She’s got this. BIG THANKS!
The Chemo treatment will probably run very similar to last time. If that’s the case, we are in for a week or so of acute care visits. This is going to get more complicated by the upcoming holiday as well.
Summer’s boyfriend, Nate (I haven’t said his name in a while! Sorry, but he has been back at SIU) will make the trip down this weekend to relieve Sylvia for a few days, and then we, Angela, Aiden, and I will join him to have a Thanksgiving in Memphis. While it already promises to be weird… I am hoping it turns out OK so that Summer will be out of acute care and avoiding return visits for blood and platelets. Fingers crossed.
St Jude is a pretty amazing place. Angela was petitioning them to let us have 5 total people in the Target House apartment. I knew that would be a problem, but I figured if anyone can push it through, it would be Angela. It turns out that they have the ability (not sure how often) to get a hotel room for additional guests for a visit like this. We have a room for a few days in Downtown Memphis courtesy of the hotel or St. Jude for when Aiden and Nate are in Memphis.
Angela wants to have a normalish family get-together and Thanksgiving meal. I was ready to scrap everything and get a bowl of dumplings at Cracker Barrel for Summer… Since she won’t eat much more than a 1/2 cup of food at any serving. (she said she wanted the dumplings!) That was not flying with my wife. She has a meal planned with some homemade corn casserole to make the point that we can be a bit normal. I asked Summer what she wanted, she said “Whatever Mom wants” and that was the answer enough for me.
We will attempt a Thanksgiving next week and I will then stay through the next week… Or possibly 2 as we work out the schedule into December.
Summer got a nice card from Ms. Bruner’s (2nd grade?) class at St. Josephs in Pekin. She told me it was so cute. She loves getting the mail and I hope everyone is understanding that she does take her time reading. Maybe someday she will write back… But for now, I know it’s a one-way street.
I lost my election for County Board… But let’s face it… I was in Memphis the week before the election and I was holding one stance at the end… If I win… I win. If I lose… I win. I would be committed to doing the job with the county board, but I am more committed to seeing my kid through this adventure for the next several months. I was a little bothered by the trash talk of the Tazewell County Republican Chair via their Facebook page. If beating me was worth “going low” then I guess I should be flattered that I bothered him so.
When I was in Memphis last time while Summer was in acute care and getting transfusions… I was trying to deal with some work stuff while giving her attention. I think I was getting a little too worked up and need to make a plan before my next visit. Over a few hours of doing emails and some Toyota relations cases, I think I was having a slight anxiety or panic attack. I sat there feeling a tightness and stressing out over two situations that I had limited power to control. But I did not want to give in, I always feel like I can get one more plate in the air. I was not prepared for the constant attention and medical procedures that go on during the days of transfusions. Guilt was to be had in either direction (in my head)… But I made the right call and eventually closed my laptop and decided that the young lady in front of me was where my attention should be. Some plates were broken that day.
I have told every customer and Family member that will listen… That I have been very blessed by having some flexibility to deal with this away from Forts. My bosses have been amazingly accommodating. I did my darndest to put out fires remotely and handle the mundane from 6 hours away… But I am now realizing that these chemo sessions require full attention as a caregiver.
I have not been asked to make a choice… So, don’t read anything into this. I am just pointing out that the best intentions to please everyone are honorable and absolutely bonkers to try and guarantee. It’s another blessing that I did not get the County Board job at this time!
See me next year as to whether I can find the motivation to give Tazewell county a fresh push!