My days are spent basking in awe of the normalcy our life seems to be rolling with lately. Lacrosse practices and games, hockey camp, Michael’s work schedule and neighborhood fun….LOTS of neighborhood fun for John! Friends ringing our doorbell and off he is playing in the neighborhood. He’s over at Brady’s playing baseball, soccer (Of course soccer…it is summer 2014 after all!) or swimming in the pool. You may also find Brady and John over at Thomas’s house playing kickball….running around being a kid. A kid without a worry…. a footloose and fancy free kid of the summer. Jon will ask me where John is and I’ll reply, “He’s playing somewhere outside…isn’t that great?!” Yes, yes it is, for the past 2 summers John has basically been in arms grasps of us at every moment. So he is loving this new freedom and we are doing our best to let him experience it.
We have been to my parent’s cabin a few times this summer and we’ve had a blast there! Fishing seems to be our new pastime (Maybe not so much for Michael. :)) and Michael and Jeffrey have enjoyed tubing and knee boarding. John has turned into quite the fisherman! His stamina for staying the course is amazing! The kid loves to fish! Fishing could be a quiet reflective experience, but with John in the boat,it’s not. He talks non-stop….for the entire time! He is usually a happy fisherman….until he starts to get out-fished…then watch out! Last summer he enjoyed swimming in the lake, but this summer he won’t even consider putting a toe in the water. He hasn’t said why, but I am pretty sure it has something to do with the northern and muskie that Jeffrey caught during our first weekend at the cabin.
We are in a good “place”. I am in a good place right now….but at the end of the school year/beginning of the summer I was struggling…REALLY struggling…more so than I have in a long time. I was drowning in doubt and worry. The doubt was over our decision to place John on the DFMO trial. Had we done the right thing? The worry? The forever nagging worry over relapse…all consuming worry. I was a basket case….worry. I was suffering from CMS, Crazy Mom Syndrome. (I saw this in a mom’s post on FB and CMS is exactly what a lot of us cancer moms deal with on a daily basis.)
I watch John….like a hawk (The poor kid!).Neuroblastoma can pop up anywhere…..my eyes….like a hawk. Do you know that horrible feeling you get when you see something devastating? It may be someone getting hurt, a car accident….something major. While in that moment your body is overcome with such an awful sensation…a feeling that I can’t fully explain. A feeling that can turn me into a total irrational , “Shit, that’s a sign of relapse”….crazed mom. That was me (probably still is me..). That feeling, my fears over shadowed EVERYTHING. Here is the series of events:
1.Red swollen cheecks – 2 weeks before school is out – after being out in the sun, John looked like a chipmunk. Was this a side effect of the DFMO? First his hair and now he was going to look like a chipmunk all summer? What else was DFMO doing that I didn’t know? I sent an email off to our lovely nurse and Dr. Walrus called me back. He listened. The man has the gift of listening. He listened as I babbled all my concerns about the DFMO. At the end of our conversation Dr. Walrus told me that he would support whatever our decision was.. to continue or to stop. We hung up and I almost immediately called him back with a few more questions.
2. Bike Rides – what a great way to get John some exercise, to stretch those legs. Hockey was the best exercise for keeping those calf muscles that have been tightened from chemo loose, but it had been months since hockey. Bike rides were a disaster! John hated them. His legs hurt (What?! Legs hurt! I got that sickening feeling…leg pain). Well…he must be tight. The kid needs to work those muscles.
3. Physical Therapy stretches – I’ll admit it…we were bad about continuing John’s stretches for his legs this spring. He was running around, being active…his legs must be fine right…no…so we hit the stretches and activities HARD we had learned at physical therapy. This was the last weekend, before the last week of school. Sunday evening John could barely walk. (There was that horrible sinking feeling once again.) Another email was sent to our nurse Cindy. She passed it on to Dr. Walrus. We worked John too hard…his muscles were sore. I was told to relax and enjoy the end of school.
4. Pink Eye – School ended on a Thursday, Friday night John has was appears to be pink eye. I take him into the clinic on Saturday with just the eye issue…no fever. We get drops. That night John breaks out in hives and has a fever (There’s that feeling..). The hives send me into a panic. I don’t even bother calling the regular clinic. I was doing my best to treat John like a regular kid, with regular childhood illnesses, but the hives threw me over the edge (because I am no longer able to think rationally…CMS). I called the oncology clinic hotline because it is after hours and who do I get? Dr. Chu! Yay! She listened, told me to relax, give John some Benadryl….normal kid stuff. The Benadryl helped, but John was still running a fever.
5. Strep – Through that first weekend of summer break John continued to run a fever and then his throat was hurting. I took him to a pediatrician and yes, he had strep (There’s that feeling again! Strep?! Strep is what John had pre diagnosis back in February/March 2012. Strep is what started all of “THIS”!)
We went on our salmon fishing trip the following weekend and while we had a great time, John wasn’t quite himself. He wasn’t interested in eating and had diarrhea (There’s that feeling.) and was not his active self (and…there it is again).
(Now while I had been having all of those “feelings”, I continued to stuff them down…deep down. I didn’t want to upset my husband and they were just too hard to say out loud. What if those feelings were right?)
I sent yet another email to John’s nurse.
6. Scheduled Dr. Apt at Children’s – This appointment just happened to be on the last day of John’s antibiotics for his strep and he woke up that morning with a sore throat. (There’s that feeling. My mind is racing. This IS how it all started! Strep….then strep again….and then cancer.) We were scheduled to see another doctor as Dr. Walrus was in the hospital on this day, but Dr. Walrus made a special trip over to see us. He’s on to my CMS. I think all of my emails and phone calls may have sent up a red flag…”This mom is losing it!” Cindy listened, Dr. Rawaas listened and shared their expertise on DFMO and my other concerns. It was a good visit. I left feeling confident about John continuing DFMO and a little concerned about the strep test results we would be getting a call on later that day.
7. The Call – Later that day I was sitting with foils in my hair at the salon and I get the call from Cindy that yes, John has strep again. The feeling….I tell her all my concerns, babble about strep and cancer. I said, “Tell me this isn’t cancer!” Cindy in her calm voice said, “Shelly, strep isn’t cancer. John has been exposed to kids with strep. He has strep.”
8. The email – When I got home from getting my hair done I had an email from Cindy. It basically said “Call us anytime. John is doing great. What can we do so you are doing the same?”. Once again I was reminded what a remarkable place that Children’s Hospital is. The care for all members of the family. Cindy’s email was the wake-up call I needed. John IS doing great….snap out of it Shelly. There’s that fear vs hope thing again. I really want to live my life with hope and not let my fear overshadow it.
My “Crazy Mom Syndrome” has let up some (I did get “that” feeling again when we were at the cabin and I noticed two large bumps on John’s head……just mosquito bites) and I have been enjoying all the moments of our summer. Having said that….this week just happens to be scan week (UGH).
Wednesday: Physical therapy evaluation, hearing test, and MIBG injection
Thursday:MIBG scan, CT scan, exam and scan results
Please pray for clear scans on Thursday!!
Love, Hope, and Blessings,