Done with Scans!

Clear/Stable Scans!! YAY!!

This past Thursday was John’s 6 months scans. October had been his last scans and prior to that he has endured them every 12 weeks since April of 2012. This 6 month span had been the longest that we’d gone without scans or the monthly visits for blood work, urine check and a physical exam. There has been so much sadness in our little Minnesota community of families fighting Neuroblastoma, I had myself worked into a full-blown tizzy the day of John’s appointments. It was the most excruciating wait for scan results to date.

The day started like all other scan days with no food for John and pills for nausea and anxiety in anticipation of the dreaded donut scan (CT scan) that gives him a horrible warm feeling, that leads to throwing up. We were dropped off to check in while Jon parked the car and on the way in John says, “I see spots.”. I tried to reassure him it was because he had come in from the sun and his eyes would adjust. Nope… he continued to see spots. Next I tried to reassure him that is must be the medicine that I gave him (This hadn’t happened before.). Next he told me he couldn’t walk straight. So now I’m thinking I gave him the wrong medicine or something…that I had poisoned him. After we got to radiology I quickly dug out the pill bottles from my purse, saying a prayer of thanks that I had actually brought the bottles along, and checked to see if they were the correct medication. Thankfully, they were. By this time I’d have to say that I had a slap happy, intoxicated 9 year old sitting beside me. Everything was extremely funny… to John…to the point that it was almost embarrassing. He was starting to come down after they IV was placed and he was totally “chill” by the time he had to get up on the CT table. This CT scan was by far the least eventful one he’s ever done. Not a peep out of the kid.

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After the CT scan we texted Jon to let him know it was a piece of cake and moved on to the MIBG scan. ( Jon is always somewhere on campus, just not with us until after all the scans. This is the routine that works best for us.) Our favorite technician was there to do the scan. Lexy had scanned John at diagnosis and every scan since. What threw me off on that day was the screen that shows John’s body as it is being scanned was turned off. I’ve learned to read that thing and I know what is supposed to light up and what shouldn’t. In the past I’ve always been able to send Jon the text that says it looked good. New policy has that screen turned off, most likely to prevent moms like me thinking they can read the thing accurately. John was still in his “zen state” and I was visiting with Lexy and the other technician. They were so excited that this was potentially John’s last scan. The scan got over and I freaked…totally reading their words and body language in such a way I was convinced that they saw something! (Damn that screen being off!) My poor husband was met by a wife that was in a total panic and we had a 3 1/2 hour wait for results.

Jon is the calm to my storm in situations like this, not that he wants to have a lengthy conversation about why I think what I think, rather he reassures me over and over that John is fine. I’m in the mind thought of “What if?!!” and he’s in the mind thought of “He’s not”. It was a pretty quiet 3 1/2 hours with parents trying not to lose their @$%&, John watching a movie with earplugs in, and a little break with lunch and for an echo.

As soon as we got to our appointment with Dr. Rawwas he was able to greet us with a smile and the news that John’s scans remain stable. Relief washed over me and I was instantly able to breathe. We talked about his blood work and he visited with John. John shared with him that he’d been to a Barry Manilow concert and that he was now playing lacorsse. We discussed John’s reaction to the medication I’d given him that morning and Dr. Rawwas suggested cutting the pills in half. I suggested that parents taking such pills on the day of scans could be very beneficial, but he wasn’t buying it.

Moving forward the plan is for John to see Dr. Rawwas in 6 months for blood work, urine check and an exam…no scans. I asked him if he was comfortable not scanning John and he replied that he’s been comfortable with that for quite a while,but he was following the recommendations of COG (I think). I think we will continue in this manner for a while. I left that day feeling good about where John is and ready to tackle the next 6 months, knowing if I need anything in-between now and the next appointment in October, Dr. Rawwas is just a phone call away.

Family Update:

The boys are all doing great!

John: Played hockey this winter, lacrosse this spring, and loves playing outside with his neighborhood friends. It’s hard to believe that he is almost at the end of is 3rd grade school year. It was 4 years ago this month that he was diagnosed with stage IV high risk Neuroblastoma.

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Jeffrey: Jeffrey played hockey this winter and is playing lacrosse this spring. He’s in 10th grade and even thinking it may be time for a summer job. I

Michael: He is loving everything about UW-Madison. This summer you can find him working at the Hastings Aquatic Center.

 

Thank you to all of you for lifting us up these past four years and giving us the courage and strength to face each day. During John’s journey there have been so many frightening, uncertain days, but even more days filled with blessings and love, because of all of you. We will move forward with faith and hope for a future filled with health and happiness for our family and all of your families as well.

Love, Hope and Blessings,

Shelly