Friday, 25 November 2011
The drama never ends in our house, We have been very cautious about germs and contamination and knock on wood Nick has not caught any virus BUT on Monday my eight year old Kurt woke up covered in spots. It took me less then a second to realize that he had the chicken pox. I sent an email to our oncology nurse to see if she still wanted us to come at the end of the week for finger poke and I got a reply that said I need to talk to you, call me immedietly. Before I had a chance to call her she called my cell phone and told me to get Nick to the hospital asap.
Once there we were ushered right into a quarantine room and the doctor let us know that Nick would need something called a VZIG (varicella-zoster immune globulin) Transfusion to try and minimize his risk of getting the chicken pox. With people who have no immune system the varicella virus can cause far worse things then just itchy spots, it can attack the brain, eyes and other major organs also the spots are an open invitation for bacterial infections. To quote the doctor, "Nick getting the chicken pox could be disasterous". We are not out of the woods yet because with the incubation period any of my children can get the infection until approx December 19th and if they do then the incubation period starts all over again. Nick is now on a quarantine watch and cant return to the hospital until the 19th has passed which means that we cant monitor his platelets or hemoglobin, or neut counts. I instead have to rely on my motherly instinct to notice if something is not right. If he does happen to get the chicken pox he will need to be in the hospital on isolation getting large amounts of IV antibiotics for a week.
We are now on pox watch and our hepa filter is running on high - Nick has slept most of today and has eaten nothing but a cinnamon bun and some coffee which is not the best sign of good health but I'm keeping my fingers crossed that he's just having a rough day.
Saturday, 19 November 2011
I broke my own rule - I have decorated for the holidays before the calendar says December.
The kids have been so excited and every day they ask how many "sleeps" there still are until we can put up the tree. I guess this year I want to linger in the holiday spirit for as long as I can.
This year is going to be different for us, this will be the first year that we wont be going to New Liskeard at all. This will be the first year that we wont all congregate in my Grandparents basement on Boxing day eating copous amounts of food and sending platters back and forth down the table in assembly line form.
This will be the first year that my Grandparents will be celebrating the holidays together in Heaven and I often think that they may have had a hand in ensuring that Nick gets to celebrate here with us on earth.
Traditionally Christmas colors are red and green or silver and gold but this year I decided to do something different. I gave away our 5 foot pitiful white tree with crappy decorations and I bought a beautiful 7.5 foot pre-lit giant and decorated it with lavender glittery bulbs and butterflies. Atop the glowing tree sits an over sized bow. When most people think of Christmas they dont think Lavender but for me its perfect, its my favorite color, it was the color of my wedding and it also happens to be the color of Hodgkin's awareness.
As I sit here blogging the tree glitters and sparkles in a way that is breathtaking - for the first time ever my Christmas tree feels complete, it doesn't feel like there is something missing... maybe my tree is a nice portrayal of my life at this moment in time.
Tuesday, 8 November 2011
I generally dont like change much but its inevitable and this time I think its for a good reason.
My blog is going to be changing a bit... not much, but I am hoping that it wont focus entirely around cancer and I can begin to share my opinions, thoughts and feelings about all of boys and the world that surrounds us.
There of course will still be cancer talk as it continues to be a part of our lives but hopefully now that treatment is done it can simply be a page in our book and not the entire story.
My life has always been far from boring and with the big plans that we have for the future I think that trend will continue.
I hope you'll stay tuned......
Tuesday, 1 November 2011
Today is a good day, its a day that we've waited a long time for.... 232 days to be exact.
Today Nick completed all of his scheduled treatments - unless told otherwise chemo and radiation are complete!
Things are not "over" as he still needs to have all of his scans repeated in December to confirm remission and then will have frequent follow up to watch closely for relapse.
The doctors are debating about whether to remove his picc line in December or leave it in for the first year of remission.
He will remain immune compromised for the next 6 months and will need to continue taking medication to prevent illness but will be able to return to school for second semester in February.
Today is a great day and its one that we prayed for but it doesnt come without anxiety. After almost a year of functioning in a certain way its hard to just switch gears, I'm not sure if we know how to live "normally" or if its even possible.
The fear of the cancer coming back is always there too, I'm hoping that the anxiety will leave soon.
We said good-bye to the radiation techs today and they instructed Nick to come back and visit his "girlfriends" soon.
They also gave him a certificate of radiation completion and a gift card to future shop.
It was certainly a bitter sweet good bye, lots of hugs and tears and well wishes for the future.
When Nick came out of the treatment room I gave him a chain with a tag that said "survivor 01-11-11", he slipped it over his head and quietly whispered "thanks mommy" and with that we were off.... out the doors and up the stairs, hopefully to never return.