We made through another set of routine scans! Last Thursday we learned all is still well with John! We are so thankful! Prayers answered!
There were a few bumps along the way that day…. a result of me. When we go to the clinic on scan day we are supposed to take a sample of John’s first morning pee. They use this to check for Neuroblastoma markers and a portion is sent to Michigan for the DFMO study. John woke up a 5, told me he was going the bathroom. It wasn’t until he walked back through my bathroom that it dawned on me that I screwed up. When I mentioned it to John he said, “It’s not my fault, I told you I was going to the bathroom.”. Yes, yes he did.
Once we are at Children’s our regular routine is put into motion. Jon drops John and I off and the 2 of us go get the scans done (I’m not 100% sure where Jon goes. I just know he’s a text away if I need him.).MIBG scan is first. John’s all set up…he’s in position, feet are taped together so he won’t move, his movie is playing, the scan in scanning. 5 minutes in…I bump the machine causing it to “lock up”. I was mortified! I was worried about getting John’s scans, other patients being able to get their scans, screwing the schedule up.. UGH! We had to wait for 20 minutes to see if it could reset and proceed with the scan. Nope – We were still able to get the pictures that were needed but it was more work for the technicians and more time on the table for my less than thrilled 8 year old son.
Next we move onto CT where he first gets an IV placed in his arm for the contrast. The nurse doing it was being really kind, but talking to much to John and that was stressing him out. She was asking him if he wanted to feel his vein…that is was like a wet spaghetti noodle. He wasn’t liking that. He’s more of 3-2-1 poke get it over kind of guy. IV in place and on to the scanning table. I was nervous because John threw up last time because of the contrast and it proved to be unpleasant again this time. John didn’t throw up, but he cried, didn’t sit still and maybe said a few bad words. The technician made a comment that John may need to be sedated next time. We don’t want that to happen! We’ve gone nearly 3 years with this scan and it is quick if he feels ok. After going over the situation with Dr. Rawwas, we are going to try Zofran next time for the nausea and Ativan for anxiety. I suggested that maybe all 3 of us should take the Ativan.
3rd Stop was the hearing test. John’s hearing remains the same as last time.We were glad to see that it hadn’t decreased and we remain hopeful that it will improve some when he is off of the DFMO.
After lunch John had his appointment with Dr. Rawwas at the clinic. That is when we were told all is well. There are spots of sclerosis on some of his bones where cancer had been, but Dr. Rawwas explained to John that these are not harmful and that they are like a scar you can get on your skin.
The manufacturer for the DFMO pills recently changed and John agreed to participate in a study a that required he stay 6 hours longer at the clinic that day while he had 5 different blood draws done (out of the IV that was placed for the ct scan) to see how his body broke down the old DFMO pills. We had to hand over all our remaining DFMO and we were given the new ones, from the new manufacturer. On Thursday we got to the hospital at 8 in the morning and left at 8:05 that night! It was a day! John went back up today to do another 6 hours with 5 blood draws with the new DFMO in his system. He’s had enough of the clinic for a while.
I forgot to mention that during that 6 hours of hanging out for blood draws John had a physical therapy evaluation. The therapist told me she doesn’t think she’ll even need to see John again! He tested in the normal to normal-high range in all categories and his ankles are twice as strong as the last time she tested them! Exciting news…it must be all that hockey he’s been playing. John was very proud of his results!
In 12 weeks we’ll do it all over again, minus the extra blood draws. It is crazy how quickly 12 weeks can fly by.
The week prior to scans our family went on a road trip for spring break all the way to Florida! That quality family time deserves a post of its own. I’ll work on that soon!
Gegen Family Updates:
The official hockey season is over but Jeffrey dabbles a little in hockey by participating in a 3 on 3 league and John is skating in a skills clinic that puts him on the ice twice a week. (Keep moving those legs!)
The lacrosse season officially began today with the start of try-outs for Michael and Jeffrey. I really dislike try-outs. I get it, but I still don’t like them.
The BIGGEST news….drum roll…….Michael applied and was accepted at University Wisconsin- Madison. We would’ve of been proud of wherever he chose (His parents are SCSU alumni after all… and I like to tell him if it wasn’t for St. Cloud State….there wouldn’t be a Michael because that’s where his mom and dad met. That always grosses him out…a lot!), but Madison was his #1 choice and he worked very hard to accomplish the goal of being accepted. I can get pretty sad when I think of him leaving and our family dynamic being forever changed. This too feels like a need for a post of its own.
One more: John and I celebrated our 20th wedding anniversary last week. It is truly astonishing how time goes by so fast, so very, very fast.
We are healthy. We are happy. We are busy. We are blessed!
Love, Hope and Blessings,