The Battle Begins....

Today our family began the fight against cancer. The doctors gave us a timeline of exactly what the next 2 years of our lives would look like and today was Day 1. 2 YEARS... Seems like such a long time, but wait.... Wasn't Nylah just born? Didn't Nevan just start day care? Didn't my brother just get married? Nope... All those things were about 2 years ago. This too will fly by; over before we know it.

Nevan's spirits are pretty high.  A visit from his good friend Taya yesterday briefly turned him back into a normal 4 year old. He has been having fun and talking a mile a minute about pretty much everything that enters his little head. Medically it has been hard. Nevan has been spiking high fevers numerous times throughout the day which is always preceded by the shakes. His heart rate that was alarmingly high at 167 when he was admitted is rising to 200bpm. Normal heart rate for a healthy 4 year old is between 70 - 100bpm.

We were crossing our fingers that Nevan would kick this fever before today because we wanted him to have a permanent central line put in. This could't be done so he got a PICC line put instead (Peripherally Inserted Central Catheter). This is a tube that gets inserted into Nevan's Bicep, up through his arm and into an artery right above his heart. This will allow his medications to enter his system faster without compromising his smaller veins. During the same surgery, Nevan also had a Lumbar Puncture, Bone Marrow Biopsy and his first dose of Chemo. In preparation for this he was given more platelettes and a drug to help with the side effects of the Chemo.

I am trying to keep all these side effects straight but there are so many. We have been warned of sores in his mouth, loss of taste and smell, nausea and vomiting among others. The worst we have been warned about are the behavioral changes that come with the steroids... The social worker shook her head, looked down and said... "Anita, their bad..." OK... No beating around the bush I guess! Apparently Nevan will have a 180 degree shift in his personality, aggression is a big one. Many parents feel that their child is gone, no longer in there. They have assured us that he is, and after a few months we will get our sweet Nevan back. We have already seen a few changes, mostly due to frustration and a feeling of not being in control of anything in his life anymore...so I try to give him as many choices as I can think of. "Nevan do you want to take this medicine from a syringe, a cup or a spoon?" The question is always the same, the answer is always different. The other day it was "put it drop by drop on my finger and I will lick it off"... Hey, what ever works!

We start everyday cozy in his hospital bed to watch morning cartoons. I stroke his hair the whole time. Mostly because it has always soothed him and partly because I know I won't be able to do this much longer. In about a week or so, Nevan's hair will fall out. Craig and I have decided to shave his head instead of letting it fall out. We will do it in a few days, daddy will also do it. We have told him that it is because this summer is so hot.

So last night I went home.... Only the second time in over a week. The first time I was forced home by Craig who was insistent that I get at least one night of decent rest, Which is probably what I should have done, but didn't. Instead of sleeping alone in my bed, in the deafening silence, I decided to paint Nevan's room! Before we were forced to make the hospital our second home, Nevan chose some paint colors for his brand new room; orange and blue. So now his room is a bright orange with 2 stripes wrapping the room in a beautiful shade of blue. Next step will be to cover the walls with snakes, bugs, lizards and frogs... all the favorites of a little boy. I asked Nevan today if he wanted me to do a superhero room instead, but he said he wanted to stick with reptiles and bugs... so one creepy crawly room coming up.

Last night I decided to start this blog. After I was done, I surfed the web for a bit browsing other cancer blogs... I came upon one that was written by a father who's daughter was fighting cancer, so I stopped to read it. It was well written, truthful yet entertaining, until it stopped very suddenly with a posting that read "2000 - 2010 THE END" ... BAD, BAD, BAD! Up until this point I dared not give my emotions a whole lot of freedom. I knew that at some point the floodgates would open and it would be uncontrollable; I couldn't let that happen in front of Nevan. Last night Nevan was not with me and that poor father's blog caused the dam to break. I cried. I cried for what Nevan was going through now, even more for what was to come. I cried for Nylah who has no comprehension of what is happening except that her best friend is sleeping in the "'pital" and her life has been turned upside down. I even cried for our dog who has been peeing outside the kids bedrooms, because she is stressed that her babies are not safe and sound in their beds at home. I even thought that it wasnt enough... Why am I doing the same thing that I have done so many other times in my life over , what now I realize were such trivial things? This type of situation deserves something greater than just crying. The human body should have a reaction that fits this level of sadness... Crying is not enough...but in the end -it was. It was raw and exhausting....and unbelievably cathartic. My strength is back, my faith renewed and I am ready to fight.

Cute story of the day:
Nevan and I are using a magic pen to make colors on one of his activity books.
Me - "Nevan what colour do you think it will turn?"
Nevan - "blue!!"
Me - "nope green!"
Me - "what about this one?"
Nevan- "yellow!"
Me- "nope brown,"
Nevan - "oh Mommy! These machines are taking all my thinking away!!"