Wow! It has been a month since I last wrote a journal entry! What have we been up to? Taking care of business and squeezing out as much fun as possible this summer. I’m loving every minute of it!!
The business end of the deal: This has included getting caught up on doctor appointments for me, eye exams all around and getting to the bottom of Jeffrey’s “asthma” issues.
Me: I hadn’t seen my doctor for my physical exam since before John’s diagnosis. While I made sure to get in for my mammogram, I skipped the whole office visit part. There I sat on the exam table draped in a gown that tied in the back…or was it in the front, still reeling from the HORRIBLE numbers I had just seen on the scale in the hall. I waited and waited and waited. I waited long enough I was certain there was a problem with my mammogram. There wasn’t. It was just busy. So what do I do once the doctor comes in and asks me how I am (This was a few days before John’s scans in July.)? I cry. Not a boo-hoo type of cry, but tears streaming down my face and they won’t stop cry. The nicer she was the more they came and I was frustrated that they wouldn’t stop. I’m sure it was the stress of the week with John’s scans, but I also know it was because of her “pep talk” that I need to take care of myself too.
Me again:Rheumatologist visit – Uneventful, blood work is all good, joints are feeling great right now….no tears
Michael, Jeffrey and Me: Eye exams – All doing well….Cheaters for me will be beneficial. I just haven’t found a pair that John doesn’t have a fit about or tell me how horrible they are. No tears
Jeffrey: The summer started with Jeffrey heading to see his respiratory doctor that he loves. They always talk hockey and with each visit he tells Jeffrey that he is going to be over 6 feet tall. (He likes the sound of that.) Jeffrey has been frustrated with his breathing while playing hockey, lacrosse and even participating in activities in gym. The short story is that after a treadmill test it was obvious that Jeffrey does not have exercise induced asthma. After seeing other doctors we learned he has a vocal chord dysfunction that mimics the symptoms of asthma. He has seen a speech pathologist and has breathing exercises he is working on to improve these symptoms during exercise. Jeffrey will visit the speech pathologist a few more times. No tears… :)
This summer has included a lot of talk with Michael about college. I can’t believe he is a senior! We went to visit Iowa State University in July and he has also visited the University of Minnesota. I know he has plans to check Madison out one more time too. He is working at Dairy Queen and we do our best to bug him just a little when we stop by.
We have been able to spend time on the river and up at my parent’s cabin in Spooner. We have done a lot of fishing and the boys have done a ton of tubing. Jeffrey has seemed to take up a huge interest in golfing, but the one time I went with him I was ducking from flying clubs. Now John….he may be his dad’s only hope of a true golf companion. He’s calm, has a nice swing and hangs in there for nine rounds.
John and I have bounced back and forth between our friends’ pools. We are totally spoiled and love every minute of it! John has also spent the summer out and about with his friends in the neighborhood. I think he’s making up for lost time.
Friends! I have had several opportunities, celebrate, relax and have fun with some of my friends. I am one very lucky lady.
I am lucky. I am blessed….truly, truly blessed and there is not a single day that goes by that I don’t remind myself of this. When John had worked up enough courage to climb on the tube behind the boat and he was grinning ear to ear, jamming both his thumbs in the air because he wanted to go faster and faster and faster….I was amazed. Amazed at that little boy that has gone through so much….there he was….bursting with energy, healthy and happy. I know our journey could be terribly different.
While John is doing so well, my heart hurts for the children and families that are fighting Neuroblastoma, some for many years. They are still fighting….their parents praying for a treatment that the cancer will respond to and their children to live. I pray every night for those families and for the beast to stay away from John.
John had his monthly appointment last week at Children’s. While we were waiting he grabbed the DFMO binder from my bag. He turned to the page that has the list of food he is to avoid and he spent some time reading and responding to each item. Then he flipped some pages and he said, “Survival?! Am I going to die?”. He had landed on DFMO schedule page and it listed the 27 cycles of the DFMO and then the 3 month survival scans, 6 months survival scans….That is where he saw “survival”. I took the binder from him and his response was, “I know…It’s like those survival shows. Like “Naked and Afraid”. Then he laughed and that seemed like the end of it as he moved on to a totally different topic.
It’s moments like this that I am reminded that there is a lot more going on behind those brown eyes. Earlier that day we had met with Brady from Children’s to share John’s journey. On the way up to the clinic that morning, in preparation for that meeting, John and I talked about his diagnosis, treatment….all that “stuff” we haven’t really discussed in a long time. I am thinking that it was our conversations prior to his reading the DFMO binder that fueled his comment. Tomorrow the 2 of us are doing a little something to help bring awareness to the DFMO clinical trial. More on that later, but I should probably be better prepared for questions.
The summer is winding down. I have been up to school a little beginning the preparations of a new school year and going through the boxes where I shoved things for the past 2 school years. (By the looks of my classroom this afternoon….I shoved a lot!)Next week is the official start to my new year with teacher workshop and before we know it….the boys will be back to school. It is time!
Have a great rest of your summer! Keep on keeping on!
Love, Hope and Blessings,
Special prayers tonight for Ila and Mae, Emma, Ethan, and Preston.