Back to Reality

Seriously, I should have my blogger status revoked! I can’t believe how much time has passed since I last blogged.

I can tell you, we have been BUSY! 

In a nutshell, this is what we’ve been up to:

Getaway weekend in Chicago

• Blue Man Group
• Ate at Rosebud (Italian)
• Went to museums/aquarium
• Ate at Smoque (from Diners, Drive-Ins, and Dives)
• Watched Cubs beat the White Sox

Week in the Upper Peninsula with the Brawley Family

• 1 House
• 1 Bird
• 2 Dogs
• 23 People of all ages, shapes and sizes
• 1,000,000 memories

Cincinnati Reds Game

•  Quick trip to Jeff and Bernice Johnson’s house (Love you guys!)
•  Quinn dropped off with Cincinnati Reds at 12:30
•  Watched Reds batting practice ON THE FIELD!
•  Watched Quinn in the outfield with the Reds players shagging balls during hitting practice
•  Watched Quinn CATCH a fly ball to the outfield!
•  Enjoyed an exciting Reds vs. Phillies game in great seats
•  Watched Quinn work his butt off as Bat Boy for the entire game
•  Picked Quinn up at 10:30 pm after a FULL day with the team
•  Became a life-long Cincinnati Reds fan

 Trip to Boyne Highlands with the DeCraene Family

•  Hang out by the pool and in the shade
•  Enjoyed the gorgeous weather
•  Ate lots of good food in the Slope Side Lounge
•  Watched the Young Americans perform in the Dinner Theatre
•  Enjoyed spending a little time with Bill, Robyn, and Lizzie (Love you guys!)
•  Watched the most amazing 4th of July parade in Harbor Springs.
•  Enjoyed being together with my entire family (Love you guys, too!)
•  Made another 1,000,000 memories

And today it is back to the unavoidable realm of chemotherapy. Ugh. 

To be perfectly honest, the last two and a half weeks have taken their toll on Johnny. It was so important to him to be able to participate in all of our activities that he really pushed himself to his limit and beyond. There were many times that he needed to sit and rest and be an observer, rather than a participant. His activity level has decreased based on his lack of muscle volume/strength. 

He has lost another 9 pounds. 

From the lack of muscles and the increase in activity, he has had some pretty excruciating nights. Mostly from spasm. We have discussed pain control options with Dr. Ansari and are trying several new things, including a Duragesic patch and a Lidocaine patch. Both are for pain management. We also discussed Medical Marijuana, and Dr. Ansari is a proponent of that and wrote us a prescription.  

At times he is having difficulty breathing. We mostly attribute it to the muscle spasms and the involvement of the diaphragm. After chemo today we went to St. Joe Med Center for a chest x-ray just to make sure there isn’t anything else going on. We will get those results tomorrow. I am nervous about the results of the x-ray knowing that there was mediastinal lymph node involvement two months ago. Could it have spread to the lungs already? I pray so hard that isn’t the case. 

He is scheduled for another session of chemo on the 19th and we will discuss further treatments and the next CT scan. His labs weren’t really that horrible considering how exhausted he is. His Alk Phos continues to climb, but his other liver labs remain steady and in the normal range. Blood counts are OK, but his white count is back in the 6-7 range and that needs to come up a little bit to make me comfortable. 

I have grounded Johnny for the next 5 days. He will stay in bed and close to the house so he has enough energy for the Relay for Life coming up this weekend. We hope that you will come join us, even if it is just to socialize! GO HERE for more information on the Relay.   We can use walkers around the clock.  If you are interested in walking call Angie (684-7402) and schedule a time slot.  Bring friends with you  --  the more, the merrier, right?

The following weekend is the giant Toad Birthday Bash/Benefit. It sounds like it will be an amazing party and I know there are a ton of people working to make it the best party ever! If you would like to help Ginger make some food, she said to give her a call (269-683-9001).

Thanks for sticking with us for an entire year. We feel the love and support surrounding us always.