An other sleepless night, in the dark, fears on my mind, racing faster than I can catch them and sadness in my heart no mother should bare.
33 days ago they found a mass in our precious baby girl’s liver. A small 9mm tumour, lethal not by size but by nature, within the 5th and 6th segments; a size and location so difficult to access, a second biopsy performed last week was inconclusive.
July 10th was an day where We, Abbigail’s Mama and Dada had to make life altering but life saving decisions for our girl. It was an other day we had to hold her down while they torturously (but as gently as possible) conducted tests to search for an other ugly tumour. It started out as a long morning, she was assessed, did blood work and her port accessed in the morning. We then walked around the hospital spreading cheer, but she wasn’t herself, very lethargic and quiet. Her temperature started to rise and she developed a fever come 12:30 as we were prepping her for the procedure. We went over the risks and decided to proceed anyways.
She went in at 1:30 and asleep in less than 5 seconds. The procedure was riskier than the last time so they took much longer and they were more cautious however they wanted to ensure they got a few good samples this time. So she was under and in the interventional room until 3:30 before waking up at 4. There was no no lung puncture thank god but when she had an ultrasound shortly after she came awake, it showed internal bleeding from the biopsy. So they wheeled her to her room upstairs on the oncology ward and we took blood work every 3 hours all night and the ICU watched her closely all night because her BP dropped very low which was indicative of blood loss. She woke up at 2am as she does at home and I wasn’t there 😦 I was at Ronald McDonald sleeping or not sleeping with baby Madden who chooses to nurse all night long! Matthew said she fell back asleep around 4am and back up at 5am sharp for blood work and ultrasound to ensure bleeding slowed. It did! They said after her treatment was complete that we could go home. She did her IVIg treatment and met with surgeons for dental surgery the following Thursday and then her BP dropped again so we had to wait until after 5 to be safe before being discharged!
Complications, rarities and odds stacking…all concepts I thought I’d never have to face again. How much rarer can she get right!?!
The second biopsy was of all those things and the team has declared it inconclusive, requiring further investigation. Based on all the facts they are unable to rule out cancer. It’s sounds and feels like they are convinced its cancer again but can’t prove it because of how difficult of a case it is. What makes it difficult and rare are enough to write a short novel, but the just of it is that her tumour is in such a place that no biopsy methods or even open biopsy surgery will allow us guaranteed access to the tumour to biopsy it for proper and guaranteed diagnosis. So here we sit a month after finding this ugly thing and all facts, signs and medical stand points say it is cancer again but we can’t be sure it is or isn’t still and no doctor at CHEO is willing to rule it out. All we have gotten after each different procedure or test (bio markers, blood, urine, MRI, CT, UltraSound, etc) is one less benign possibility checked off and ruled out 😦
How much more can she take…we worry we fear we scream and we pray.
July 15th, the Tumour Board meets and agrees the MIBG scan is pointless and they are not convinced of the worth of a PET/CT scan either. Leaving us without further options for a “scholarly diagnosis” they said. However our oncologist is calling sick kids today to ask them some questions about the PET/CT and see if there might be a slight chance it would be worth it. The entire team all believe it is cancer, based on facts and that we have ruled out all other possibilities, so we start treatment hopefully Thursday after her dental surgery, she will have to be admitted for at least three to four days of intensive and multiple chemotherapies.
I think they “knew” to some degree all along that it was NB and every test we’ve done, simply kept checking off all of the other possibilities and in turn has been enough for the team to agree unanimously on the diagnosis. They and we have just been hoping for a “scholarly confirmation” as they put it.
They are now confident enough to treat her so in my heart and my gut, although the words have not been uttered, her NB has relapsed and metastasized. I am afraid to ask if Dr Johnston has diagnosed a relapse because I am not prepared to hear those words all over again. I’m sure I will read the painful words in her charts tomorrow. Deep down I know and I heard it in her tone last night. I mean it is common sense right. What doctor waits and waits all month, then suddenly slaps high dose chemo in a toddler if it isn’t cancer. Ahhh!!!!! Vomit!
Although we do not have a fully laid put plan, we have a start. We begin the very intense protocol for a metastasized NB hopefully this week, complete the first two rounds of chemo and scan the tumour again. If it shrinks after two chemos they will have their “scholarly diagnosis” and we will complete the protocol. If by that time it has appeared in other areas of her body we will complete the radiation portion of the protocol and possibly a stem cell/bone marrow transplant.
We have so many questions that have so few answers and here we are again about to travel this road again but this time we are choosing to do this one day at a time. What other choice do we have when the painted picture is so dark, lonely, unknown and frightening. Not having the “scholarly confirmation” allows us to maintain some hope and maybe denial, so for now, I will take that, hold my baby’s hair back and rock her through day one of chemo and hope for a better tomorrow.
Again, this is so rare that there is no “real plan”. As I type this, her doctor here and and a team at Sick Kids Hospital in Toronto are fine tuning the NB protocol to fit her “case” and are trying to properly “stage” her for treatment. As for her OMS, we can’t help but wonder if this new tumour is the cause for her newest and hardest relapse. Silver lining? Maybe her symptoms will come back under control through this rough road we are about to travel.