Sometimes I like being right and Celebrating a Milestone

If you managed to make it to the end of my last post, you may be wondering how things ended up with Noah. Let’s start with Eli’s milestone.

Celebrating a Milestone

A common event in many children’s hospitals when a child has completed their cancer treatment is a bell ringing celebration. Eli officially finished his 42 week treatment protocol with cancer in remission on September 4th. At least, that is the date he had his last EOT scan.

If you are the type to note that from the date of his first chemotherapy treatment, November 2, 2018, to September 4, 2019 is more than 42 weeks, you would be right. It’s almost 44 weeks, which is actually pretty amazing. When he was inpatient for his first treatment, the nurses said almost all kids have delays in their chemo regimen due to low blood counts. I remember the doctor telling us that Eli could only receive his chemo when certain blood levels were above specific amounts. Eli’s levels were always high enough to receive his chemotherapy on time, every time. His ANC only dropped to 0 once, but recovered within the hoped for time frame (Absolute Neutrafil Count is one of the numbers they look at). Eli’s only delay was for surgery.

Since EOT scans were rather stressful, we just slid into the maintenance chemo routine before I got around to scheduling the bell ringing. A number of the inpatient staff came out to participate. A poem was read.

The bell was rung.

The family celebrated.

Most of Eli’s chemo was outpatient, so most of the inpatient staff didn’t have a chance to meet Eli, but we still recognized a few faces.

Going Forward

You might wonder why we celebrated his end of treatment since Eli is still doing chemo. Each cancer has its own treatment protocol and is subject to all the variations of each individual being treated. So when various cancer researchers want funding for their particular cancer, it’s because no one cancer treatment works for all cancers. There can also be multiple treatments for each type of cancer. In te case of Rhabdomyosarcoma, there are different protocols depending on risk level and subtype. There is even research being done for particular targets on tumor mutations. They are also continually tweaking the protocols to fine tune treatment to make it more effective.

Recent clinical trials in Europe have shown that following the main treatment regimen with maintenance chemo can reduce the relapse rate in some kids with Rhabdomyosarcoma. So now maintenance chemo is becoming the standard of care for some kids. His maintenance chemo is scheduled to continue for 6 months.

Will this keep cancer from returning in Eli? Who knows. The latest numbers, published just over a month ago, project his chances of survival in 5 years without relapse at 6% (known as EFS or Event Free Survival) or overall survival (OS), including with relapse(s), at 19%. So, while we don’t know if maintenance chemo will help, we hope it will. I don’t know whether Eli will be the 6%, which is what we’re going for, but it doesn’t hurt to try. After all, he’s made a great start.

Sometimes I Like Being Right

Well, the lump in Noah’s neck isn’t nothing, but it isn’t cancer (yay!). I really had a hard time waiting for Noah’s appointment with the ENT, but the day finally came yesterday. Eli had chemo before lunch, then Noah met with the ENT after lunch. Final results are pending an ultrasound, which I hope will be done this week, but preliminary diagnosis is Thyroglossal duct cyst or Dermoid cyst. Surgery is scheduled for November (Noah will stay overnight). There is also a chance that it’s his thyroid, in which case they’ll give meds to reduce the size and and no surgery will be necessary.


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