Great, Fantastic and Weird News

GREAT News: Last Thursday Isabella had her last Rituximab treatment at the hospital, and now Happy Eddie can retire. We bought her little elephant friend from the hospital gift shop the first day of her Rituximab IV in early February and he has been traveling back and forth with us to the hospital every Thursday for the past month. Happy Eddie has quite a reputation at the hospital, everyone knows him by name! (By the way, Izzy chose his name, don't ask me how but it sure seemed to suit him). Prayers have been answered and Izzy has breezed through the treatments with NO side effects at all. She has been such a trooper getting IVs every week and spending long days at the hospital, proudly walking Happy Eddie around making the nurses and other kids smile.


Izzy's last Rituximab Treatment. Happy Eddie can happily retire to the land of deflated mylar elephants now.



FANTASTIC News: We met with Izzy's neurologist on Friday and he is extremely happy with her progress as far as her OMS is concerned. He does not see any sign of Opsoclonus (eye movements), Myoclonus (tremors) and if there is any Ataxia (balance/coordination problems) it would be considered normal for her age. Not to mention that I am pretty uncoordinated myself so I don't think she is genetically wired to be a ballerina :) Again, our prayers have been answered and it appears that she is in remission!



Now for the WEIRD News: So...something odd has happened that we've been trying to make sense of for the past two weeks. We had an appointment for Izzy's baby sister Emma with our pediatrician on February 14th. Dr. Mark has been involved in Izzy's medical case since she was first showing signs of opsoclonus and balance problems right before Christmas. Although we were there to see him for Emma's 4 month check up, he had Izzy's file in hand when he came into the office. He said "So, you guys have been through quite a roller coaster ride with Izzy's diagnosis, haven't you. First she was diagnosed with Neurblastoma (cancer), then Ganglioneuroma (not cancer), and now it's being called Grade One Neuroblastoma again" (cancer). This was the first we had heard that Izzy's diagnosis was changed, we thought it must be a mistake with Dr. Mark's paperwork. We took a copy of the paperwork to Izzy's follow up appointment with the Oncologist last week, and we found that someone did make a mistake. Unfortunately, the mistake was made when we were informed that her tumor was benign. Izzy's tumor WAS cancerous after all.

I've been thinking a lot about this and trying to understand what this means. Here we've been celebrating the amazing news that Izzy's tumor was benign, only to find out now that it was actually CANCER. How could someone make a mistake like this? Who made the mistake? We haven't been able to get all of the answers, but it appears that the oncologist made a mistake when he called us regarding the final pathology reports after Izzy's surgery, although he isn't admitting that he made the mistake. It just doesn't make any sense, I don't understand it and I've had a pit in my stomach about this since this news was confirmed. It doesn't really change anything as far as her treatment plans are concerned...but cancer? In our little girl? No parent wants to ever hear those words in the same sentence, it is a nightmare that we thought was behind us.


On the bright side, Izzy's type and grade of cancer, Grade 1 Neuroblastoma (also referred to as ganglio-neuroblastoma), is unlikely to return or spread. The tumor had intermixed cancerous cells, but it is considered very lowgrade and not likely to metastasize. The treatment plan hasn't changed: Izzy is still being treated for her OMS with the Rituximab (done now), monthly IVIG treatments and steroids for the next year, but no actual chemo or radiation is required at this point. She will need to have CT scans done every 3-4 months for the next 3 years to make sure there is no sign of any other tumor growth.


I have been praying about how to feel about this news that Izzy does, or DID, have cancer. Should I be angry at the hospital/doctors/whoever? Should we demand for someone to be held accountable for such terrible miscommunication?  What difference would that make? Today, I got the answer that I was searching for, it came to me in a song lyric on my way home from work.


"Every victory is Yours.
Savior, worthy of honor and glory
Worthy of all our praise
You overcame."


So to me, the bottom line is this: Whatever it is...heartbreak, divorce, failure, disappointment, or cancer. Jesus has already overcome it, the Victory is HIS. Isabella has been healed of cancer, that we know.

There is a song that I sometimes sing to the girls at bedtime that goes like this:

"I want to Shine, Shine, Shine.
Just like a fire fly,
God lights me up inside
With His Love.

I want to shine,
I want to glow,
So that everyone will know
That God's Love is inside of me
And when I share my love, it grows.

I want to Shine, Shine, Shine
Just like a fire fly
God lights me up inside
With His Love."

Lately Izzy won't let me tuck her in at night without singing this song at least twice. "Sing Shine!" she will say repeatedly until I cave in, no matter how late it is past her bedtime or how tired I am. There is a reason that God chose Isabella and our family for this. She has a light to shine.

Praying that you are blessed beyond measure.

Karen & Tom