Shannon's birthday weekend culminated with a blowout backyard brat bash that was full of laughter and joy!
Shannon's 13th birthday trip to San Fran (she returned to Rochester Saturday evening), our time together with Erin and our weekend reunion and birthday party has us all feeling fortunate to have so much love in our lives.
At St. John's Sunday morning, we felt the love as well with close friends in pews all around us. The girls giggled their way through the worship. There was a day when we would have given them dirty looks for squirrely behavior during mass - but that's all changed. Giggle away.
August starts with blood labs and a check up with our team in hematology. Shannon's energy levels are always an indication of how her blood counts will read. And right now she is full of steam and intends to participate in both golf league and her conditioning class Monday. We expect that the doctors will recommend a tapering of the steroids that helped stabilize things over these past few weeks.
The steroids work magic to tame things around the tumor - they also do a number on Shannon's complexion. She's ready for a decreased dosage of Decadron.
I suspect August will be a blur as well as the school planning, shopping and sports sign ups are already underway. We get a week at Lake Hubert. We get to be together. Time...we get time...we have time. We will enjoy. One day at a time.
The Bloomington Lincoln class of 1981 is gathering tonight in Minneapolis and I chose not to attend. Based on the events of the last three months, I just don't feel up to it. I had a ton of fun in high school - no doubt it was a great phase of my life. I graduated with a class of over 500 and have remained in consistent contact with only a handful of my classmates. I would certainly like to see many of these people. I just don't have the energy to tell our story over and over. I know there are plenty of my classmates who have been through challenging situations and could lend support. Like we've noted many times - people everywhere face really big stuff all the time and come out on the other side.
Maybe that's gnawing at me. Shannon told me "you can't please everyone". That remains a constant challenge in this current phase of our lives.
Another possible explanation for my irritability is that my physical fitness has been slowed by the extreme heat. I suppose I could be out there at 6:00am, but even then the humidity has been so aggressive that it doesn't feel very good. It's better today. I got a walk in this morning and then just took a bike ride with Erin.
No doubt, my physicality is tied to my serenity. It's true for all of us in our house. In fact, Shannon is starting to sound out her plan to get back in shape. Today, she is back at the Rochester Athletic Club for her Speed, Agility and Quickness class. She wants to shoot pucks...she wants to hit golf shots...she wants to get stronger. Next week she turns 13 and at the RAC if you are 13 you can work out on the fitness floor without restriction. So she's talking about that stuff. Getting her head wrapped around getting ready to play sports which is great. That makes her happy. We just have to temper her enthusiasm and keep the pounds on. More breakfast shakes.
So let's pray for more moderate weather so we can all get back outdoors!
For most of Shannon and Erin's lives I have traveled for work. Usually, a couple nights out most weeks. The girls grew accustom to Dad's trips - Jen also settled into a routine with me on the road. Our household would invariably benefit as Mom always found it easier to complete "work at home" projects and activities with me gone. There was a certain balance to that routine that has been missing since Shannon's diagnosis April 15.
Business travel can be brutal - some weeks you wonder what the heck you are doing. If you are a customer-facing representative of some company your office is often times a Hampton Inn in Duluth or a Courtyard by Marriott in Normal IL. But if this is what you do and you are good at it and you enjoy making deals and growing business you endure the travel because that's what earns you the medium-sized bucks.
However, the best part of going on business trips is coming home. The kids are excited to see you. The wife can't keep her hands off you (OK, that was a stretch). Overall, there is a freshness each and every week. Absence always makes the heart grow fonder.
When I returned from my trip late Thursday it was there again. That feeling that you are home again and all is right in the world. And, my goodness, had they been productive. A trip to Ikea gave Jen many assembly projects to piece together and the girls got to play "Design on a Dime" with their rooms. And the upgrades turned out great. The girls were excited!
So it was a good week. And Shannon looked great. All you have to do is take one look at her big brown eyes to see how she is feeling. That was noted on Friday when we were in to check Shannon's weight which was down marginally - but Dr. Rodriguez said all you have to do is look at her to know that Shannon is back.
Still we were ordered to rest up - stay out of the heat - and continue to build Shannon's strength.
So this weekend that gave us license to sit around, eat and watch some great sports drama together. The highlights included another Irish win in a major - Darren Clarke's triumph in the British Open. The Twins taking three-of-four from KC to pull within 5 games of 1st. And the event all of us were most excited to watch - the US Women's World Cup soccer loss to Japan in PK's. Shannon watched over at her friend Megan's. Jen, Erin and I watched together at home and couldn't help but smile at the joy on the faces of the Japanese players. Truly, that country needed the pick me up that the World Cup title provided them.
The perfect song for the mood is now playing; From Norah Jones album Feels Like Home...What am I to you?
We're rebounding nicely but not completely out of the woods as Shannon still has vomit paranoia and is not moving around too much. As usual, she's following Dr. orders to the letter; she was prescribed rest and calorie ingestion.
Shannon had a good eating day Tuesday but threw it all up that night - her confidence was really jolted. Not to mention her abdominal muscles are really sore. Wednesday she ate small portions but kept it down. And Thursday she started craving foods and eating with more and more confidence. Reese's puffs, ham and cheese omelet with an english muffin, carnation instant breakfast milk shake, mac n cheese, pizza rolls, banana, shredded pork and jo-jo's from John Hardy's, a snack size McFlurry... do not try this at home. The challenge for the rest of us in the house is watching and not participating.
The forced rest forced us to open a Netflix account and now we are streaming movies in bulk. Cousins Jack and Laurynn were in town and joined us for a movie Wednesday. Thursday it was Devil Wears Prada with cousin Gracie and Aunt Megan.
The brightest side is that Shannon is once again interested in socializing. For several days there she did not have any interest in interacting with any of us. But now she's got her text back on. Friday she has a buddy coming over to hang out - maybe go to a movie if Shannon is up to it.
The only downside is that Erin is becoming increasingly annoyed at her big sister. With Shannon sick, Erin was forced to tiptoe around like the rest of us. But now that Shannon has carte blanche to order us around and sit on her butt Erin's eye rolls are increasing in frequency. Hey that's just like the old normal!
A couple musical observations to share; the youthful English singer-songwriter Adele has it goin on. Man, she sings some soulful tunes. Highly recommend.
Saturday, Jen and I are excited to see Eric Hutchinson at the St. John's Block Party - we are so proud that our home parish is producing such a cool summer music festival and Saturday we will get away for a few hours to take in the music of this young American singer-songwriter.
If I messed with our karma by complaining about our "perpetual vacation" a while back, I sincerely apologize. This blog is much more fun to write when we're giving vacation updates instead of health updates!
Today is a better day than yesterday, and yesterday was better than the day before, but progress is slow. Shannon had her fourth liter of IV fluids this morning and that helps her to perk up. We’ll see how long it lasts today.
Thank goodness for the kindness and caring of the nurses we’ve come in contact with over these past five days in the PITC. Here it is, a beautiful sunny, holiday weekend and nurses Shelly and Tall Tammy and Short Tammy all acted like they didn’t want to be any place else. Just here to help us help our kid feel better.
Erin has been along for these infusions this week - at her request. She likes to be “in the know”. She gathered information from nurse Short Tammy during the first infusion about how the pump works and how fast they can infuse the fluids - 600ml per hour was the pace that worked best for Shannon. So, the next day, with nurse Tall Tammy in charge, the pump was set at a slower speed and Erin politely explained that Shannon could tolerate it at a faster pace so Erin suggested “let’s crank it up so we can get outta here sooner!” By the time we arrived today, Erin’s reputation preceded her. Nurse Shelly had a note left by Tall Tammy suggesting she check with Shannon’s little sister to make sure everything was going as it should!
So, we’re trying to laugh in between our tears. Tomorrow brings another step in the journey. Our four week “rest period” has ended and we head back to Mayo 16 for a blood draw and a hematology appointment to make plans for the maintenance dose of chemo that is scheduled to start this week. We’ll see if they delay it a few days as Shannon works to regain her strength.
Hopefully today is the day the vomiting will stop and the sparkle will return to Shannon's eyes. We miss our sassy Shan. She’s been a shell of herself, and that has been so hard for all of us to see. The crux of all our emotions this week is this: Shannon has looked like a cancer patient. Imagine that. How could it catch us by surprise? Time to step back and remind ourselves that each good day is a good day ...
Happy Independence Day, everyone.
We met Dr. Barney at Desk R for a quick exam. Dr. Barney is the radiation/oncology on-call physician and he needed to see Shannon before he could order up the IV treatment. And he pulled the strings to get us in here at PITC. In fact, he ordered up one for Sunday and Monday and we just worked it out that we will be back 4th of July morning as well as we try to stay ahead and keep Shannon hydrated.
Dr Barney's exam found that her resting heart rate was fine but after forcing Shannon to take a short walk it spiked again indicating some dehydration.
The nausea has subsided slightly - but not completely. In fact, Shannon threw up again when we got up here for the infusion. But her eyes are brighter. She is moving a little faster. Still requesting a wheel chair to get around the hospital.
So we are watching Rafa vs. The Joker in the Wimbledon men's final, reading the Sunday paper and taking on same fluids that will hopefully lead to a better day. Baby steps.
Managing the meds alone would push me to the edge - the new Zofran, the old Zofran, the Phenagren, the Decadron, the pill cutter...etc...etc...etc. Then there is the managing the rest of us - the pills are kid stuff compared to managing the kid stuff. And then there's me... let's just say it's a good thing I can cook.
Shannon continues to struggle finding any adrenal chemical to drive thirst or hunger or generate any energy to spark a rally. Maybe we are making slow progress but it is really slow. And it's really putting a strain on all of us because it is so frustrating to put a finger on the cause or find any relief.
Over the past four days, we have demanded much consultation with our Mayo radiation/oncology team and they are just as confounded. We have added a 1mg dosage of the steroid Decadron to see if that will help tame any possible swelling or add some spunk.
This morning started with promise as Shannon asked for and ate half of a banana. And later a small portion of bagel and a trip to the backyard to watch Erin and Jen tie-dye shirts. But after settling back onto the sofa she threw up again. Mainly what came up was liquid but certainly there was not enough nutritional substance processed to fuel a Shannon comeback. Still, she found some joy in watching the USA Women's World Cup win over Columbia. There was sparkle in her eyes. Progress.
But then the sofa monster got her again and she never really rallied for the rest of the day. Back to the sleepy eyes, lethargic, unresponsive Shannon struggling to find enough energy to even call for help. Grandma came over for a few hours of relief work and got her to take in some chicken soup and more Gatorade. (I'm not sure the poor kid will ever be able to drink Gatorade again after this week.)
Tonight we made another call to the on-call radiation/oncology resident and we will meet him at St. Mary's in the morning for another IV infusion to keep us current on fluids.
Maybe tomorrow will bring more promise and less frustration. Maybe we will get more sparkle and fewer snarls. Maybe tomorrow we will all stay happy and Shannon will get hungry. And maybe Matt Capps will be able to close out a win for the Twins...
We are desperate to get some nutrients in her. But even four bites of a milk shake with instant breakfast mix in it came right back up. We are armed with a couple different anti-nausea drugs and just sitting and watching and hoping she can find some stability.
We had to bail on the Twins game tonight with cousins Joe and Leila and Pat and Mame. Shannon wanted us to go without her. That wasn't going to happen. She has been such a warrior for us - so hard to see her so weak and feeble.