Upside down and Inside out

Last night, I took the longest walk of my life. I was sweating, my heart was racing, I could hardly breath... It took about 30 seconds. Last night I walked with my husband into the office of my son's oncologist to find out the diagnosis we were waiting almost a week to hear. "mom, dad we got the results back from Nevan's bone marrow biopsy... He has Pre B Cell Acute Lymphoblastic Leukemia" ... And so begins Our New Life.

I think if I am to be honest with myself, I knew that Nevan had Leukemia when the nurse called last Friday morning before 6am to tell me that Nevan's cell counts were way off and to bring him to the emergency room immediately. It didn't stop me from breaking down sobbing when the pediatrician met me in the emerg, put his hand on my shoulder and said "your son has Leukemia". I have heard other people say that it was very difficult to call and tell their spouse the news... How do they break it to them? I didn't feel this way. I called Craig almost immediately out in the waiting room and just blurted it out. All I wanted was for him to be there, to come as quickly as possible to be by mine and Nevan's side while they packed him up in the ambulance and took him to McMaster Children's Hospital.

It took Nevan 4 visits to the dentist and a whole lot of bribing to get him to open his mouth for the first time; Juice and chocolate always had to be within reach to ever get him to take any sort of medication; and an explanation to the other kids in the waiting room to let them know that going to the optometrist really doesn't hurt and not to judge anything by the screams coming from exam lane 2!

Fast forward to today... 1 week in the hospital; an IV, bloodwork twice daily, a sedated procedure that left him with a need for morphine, 2 blood transfusions and countless blood pressure and temperature checks. This morning I watched Nevan hold the syringe filled with his blood for the nurse who had to reach for an alcohol swab and then say thank you as she walked away. Sniff sniff... Proud mamma.... The strength and resilience of our 4 year old!

So I guess I should start from the beginning and very briefly let you know what got us here in the first place. Nevan had been feeling sick for a while. He always took a long time to kick a cold or cough (but so do so many other kids). He was very picky with his meals and never finished his plate (what kid does?) and he never liked to walk anywhere, always wanted to be carried (isn't that the definition of a 3/4 yr old?) ... All symptoms of Leukemia as we have now learned. We didn't pay any attention to these small and early signs. It was when Nevan seemed to get sad... A sadness we had never seen before and could very confidently say was out of character for any four year old, let alone our happy, mellow little monkey. He also started developing fevers that would start around 6pm and break by morning. The drs told us that it was fairly normal considering he was in kindergarten and Nylah was in daycare and just attributed the sadness to not adjusting well to school and my going back to work. So we started to adjust... I dropped down to part time to try and be there more and Craig and I began spending more and more time with him. His mood did initially perk up quite a bit, but it did nothing for the fevers. On Nylah's second birthday Nevan complained that his neck was sore and later that night after his bath we noticed a lump. Off to the dr we went and again it was blown off as nothing to worry about, but to ease our worry, an ultrasound was requested as well as a CBC (Complete Blood Count). We took Nevan for his bloodwork last Thurs afternoon and before 6am a nurse made a phone call to our home...and here we are.

Ordinarily, one would be able to get a preliminary yet fairly conclusive diagnosis with a test called Flow Cytometry... Nevan had this, but it came back inconclusive. The next step was a Bone Marrow Aspiration... Nevan had this but it came up dry. Last step, a Bone Marrow Biopsy... Nevan had this and it was successful... FINALLY! The problem with this test however is that it takes days for the results to come in...which is the reason our whole family just had the most excruciating week of our lives. So as I said the diagnosis is Pre B Cell ALL. Of all the possible subtypes of Leukemia, this is the best we could have hoped for, highest survival rate, best prognosis... I hate the word relieved... I'm not relieved that my little boy has cancer... but am I whole heartedly grateful that it isnt something more serious.

We have gone through all the normal phases... including asking all those questions we will never have answers to; like "why us?" "why him?" "He is the perfect child... loved by everyone who meets him... what did he do to deserve this?" But what does any kid do to deserve this? Hit their siblings? Throw food at the dinner table? Have a tantrum in the middle of the grocery store? What did any of the 13 kids in the rooms we pass to reach Nevan's do to deserve this? It's so hard... it broke my heart the first day I was there, but as the days passed... I took a little bit of a closer look. One child... maybe 14, laughing with her friends on her cell phone. Another one was maybe 10, pushing his father away to throw him off the game of Wii they were playing. A little sweet pea, down the hall, younger than Nevan caught my eye also... he was upset and crying that the balloon he got from someone had popped... such a non-cancer, normal 3-year old heart break.

This post is called upside down and inside out, because that is exactly what our lives have turned into... not just ours, but everyone who is a constant in Nevan's life feels like they are in a tail spin... including Nylah who asks every morning "Me see wawa a dodo a pital??!!" Translation: "Can I see Nevan sleeping at the hospital?!" (Why does a 2 year old know the word hospital?) Although I certainly don't expect our lives to stay upside down and inside out, this will be a whole new life for us... a life with cancer then remission. Nevan will have Chemotherapy for the next 2 years and then there will be constant monitoring to ensure that he stays in remission for 5 years after that... if that happens... we are pretty much free and clear, although he will visit the amazing people at McMaster Hospital for the rest of his life, where we will be reminded annually of this great battle we are about to enter.

I think that's all for today... after all this is a blog not a Novel! This week end Nevan will go into surgery to have another bone marrow biopsy, a lumbar puncture, a PICC line put in and his first dose of Chemo. Please send well wishes and prayers that he will have a speedy recovery from it all. Craig will also be posting on this blog, we will write for ourselves and on behalf of Nevan and Nylah. Next time I will give you more details about his condition and the details of what will come next... lets first get through this week end. One day at a time, one minute at a time, one second at a time.

Cute story of the day:
As I was changing the tape on Nevan's IV:
Nevan: "Mommy, you would make a great Dr... maybe when you grow up, you should be a Dr",
Me: "No, I am already exactly what I want to be: Nevan and Nylah's mommy... maybe you should be a Dr when you grow up!"
Nevan: Long Pause................."No, I think I'll be Spiderman"