Well hello there, its been a while.
Lots has happened since last I wrote and like you'd expect life has been eventful.
Where to begin......
The little boy that joined our family by surprise in 2014 is now legally ours and is ten years old.
The combination of being on the severe end of the autism spectrum, seven years of questionable upbringing and a swift switch from one family to another has made him a challenge to parent at times but we want the best for him, we want to see him flourish and bloom and so even though some days can be frustrating we push on and strive for happiness and success. We know that its obtainable. Looking back we can see how fantastically far he has come but sometimes it feels like a raindrop in the ocean.
In December 2016 we welcomed a little GIRL from our twenty first embryo transfer!
Beau is now a plump and silly nine month old. She really is such a wonderful addition to our family and she has such a special bond with biggest brother Nick. With there being 20 years between them I was worried for a minute, especially when he initially wasn't thrilled with the news of another sibling. Who could blame him, he knew he would spend a large portion of his time correcting people when they assume he is her dad and I am his girlfriend (awkward!)
During my pregnancy with her we had planned to bank her cord blood just in case it would ever be needed but a week before her birth Nick reached his five year remission anniversary and was considered CANCER FREE! Oncology suggested that banking the blood on the chances that Nicks cancer would come back were less than 3.5% and it would be an extremely costly waste of money. I decided not to think about the unlikely, to focus on the positives... my son was cancer free and I was having a baby within the week. If only I had made a different choice. If only I had followed my gut. If only I trusted in my belief of taking the path of least regret.
Less than three months later Nick began talking about symptoms reappearing, knowing that his anxiety tends to sometimes get the best of him I would reassure him of the odds, of the purpose of lymph nodes and their role within the body. One day he came up to get some orange juice from the fridge in nothing but his long johns and I noticed how thin my child was looking. Three point five percent mom.... three point five percent, he must be thin from the months of athletics in college and the weekly martial arts classes - yeah that's it.
Then I got a text, mom I dunno what happened but everything went dark and I fell.
ENOUGH WAS ENOUGH.
I emailed his oncology nurse and asked for a quick check up.
Everything looks good, nodes don't feel enlarged but lets just do a CT scan to make everyone feel better. Fast forward to a couple days after the CT scan and I get a voice mail Hey guys can you give me a call back, we got Nicks CT report and we need to chat about next steps. That's voice mail code for brace yourself, everyone knows that there wouldn't need to be next steps if everything was normal.
Many doctors later, many biopsies and tests later and we got the official news. Less Than Three Point Five Percent and Nick fell right in it. Treatment would be different this time, Nick would be an adult and the protocol much harder. Because he'd already received chemo and radiation in the past, this time he would need something called salvage chemo and hopefully autologous stem cell therapy (more on this in a future post).
Nick was angry and rightfully so, I was angry, everyone who loved him was angry. This wasn't supposed to happen again.
Nick has now completed two cycles of GDP protocol chemotherapy and we are currently waiting for his body to recover before a CT scan is booked and we have our team meeting about next steps. While we wait I have the job of injecting my child daily with brutally expensive medication in hopes of keeping his immune system at a level that will keep a minuscule infection from being extremely problematic. He doesn't like getting the shots, I don't like giving the shots but we both know that they need to be done and so we approach them with humour, Welcome to your spa treatment Nicholas, would you like the batman band aids or the extra sticky brown plastic ones? Those ones come with a free arm wax ;)