Merry Christmas

It has certainly been a fabulous Christmas this year. For the first time since 2008 we had a family holiday without the Cancer Monster in the room. Of course the monster lurked under the bed still, it always will, but we had a wonderful time and ignored the beast almost completely!

I love decorating the tree. I don't get to do the chic, color-coordinated tree of my designer dreams; instead I have the most spectacular tree filled with children's ornaments and happy memories. My tree has history adorning it. My tree is a family tree.


Our week off was very family oriented. We began with a trip to New York City to see The Grinch at MSG. It was so much fun. The kids enjoyed the thrill of being in the city and soaked up the spectacle of the musical numbers. I got a thrill out of being back at MSG having been there a week earlier for the 12/12/12 Sandy Benefit Concert. Then there was our visit to the tree at Rockerfeller Center which was magnificent. The kids had seen it before, but had been too young to remember. We were finally doing the trip we wanted to become a kiddy tradition every year...finally. I was acutely aware of how lucky we were that we could start our tradition now.

Christmas Day was a family affair once again. Cousins and grandparents joined in the merriment. The boys loved their gifts from Santa, and I was rather impressed with myself for cooking the roast lamb to perfection....I'm not a cook so I toot my own horn on that one!

Boxing Day (as I will always call it being British) was quiet and a chance to hang out together without any agenda. A little shocked by how quickly Christmas comes and goes, I settled in to enjoy my sons playing with their new toys and joining in the odd board game or two. I ate the leftovers...the plebeians chose not to for some inexplicable reason!!! Crazy!




Being a couple is not easy when you have kids. Our couple time had become non-existent during the treatment years and we were finding it very hard to get our grove on as a partnership in anything other than medical and discipline control. Thankfully, Nana and Poppa came to the rescue with a precious gift, the gift of time. They took the boys for a two night sleepover. Talk about win-win! The boys were very excited and I came in after dropping them off to a house filled with a roaring fire and candlelight. Some much needed time together was spent actually talking to one another about us and our interests, rather than the kids. Note to self...do this more often!

Another big event was Sammy's first ever sledding day. Although he was given the all clear last year, there had not been any snow...go figure! Finally, we set out, all bundled up, to watch as our precious children hurled themselves down steel and slippery hills, crying out with delight at the thrill of feeling the snow kiss their cheeks and the wind whiz past them as they hit top speed just before reaching the tree line :-) I was not concerned, protective or afraid for them. I loved it! They were free! They were kids! They were happy, and so was I.

There were many jobs I planned to do over this vacation, and I must admit they did not get done. They await my attention, laughing at my procrastination. But I don't care! I laugh back at them because I have had a Christmas to remember for a lifetime. My boys were happy and healthy (ignoring the panic of the small spots appearing on Sammy and the rush to CHAM to check him out) and I got a chance to feel like we could really doable normal things families do during the Holidays. We knew the cancer monster was around, but he was well hidden and a little scared to show himself with all the laughter and merriment filling the house.

So, I wish you all a very Happy New Year! May we find the cure in 2013 and bring joy to thousands of families fighting monsters.

Thankful

Today is Thanksgiving Day.  An American holiday which I have celebrated over the past 15 years.  I enjoy going to my in-laws and seeing my extended American family.  I miss my British family, but it doesn't his me as hard as Christmas, the holiday I have celebrated all my life.

Thanksgiving is a nice holiday where people gather and enjoy one another's company.  It is, in fact, a lot less commercial than Christmas, which I appreciate!  But the best thing about Thanksgiving, for me, is that I get to really be thankful.  I am one of the luckiest mummy's in the world.  I have both my boys with me....and I almost didn't!

You know about Sammy, but Jack was no walk in the park either!  He decided to come out after just 24 weeks gestation, so I fought to keep him growing inside me with Magnesium, a Terbutaline pump and months of bed-rest.  We made it to 36 weeks and only a few days in the NICU after some complications from the emergency C-section!  At five years old, Jack was diagnosed with Bacterial Meningitis.  He had an emergency lumbar puncture and, after 10 days in hospital, we administered medications via a picc line in his chest.  He and Sammy both have neck and chest scars from their lines.

With our crazy battles to keep our children healthy, I really do appreciate spending today with my sons.

• I am thankful for the excess laundry I do with two boys who can always find the dirtiest place to play
• I am thankful that I get prodded awake in the wee hours of the morning to tell someone they are okay after a nightmare
• I am thankful that I have to say no to social events because my kids need me for one of their events
• I am thankful that I have been known to have a mini-meltdown as I work out how to get my kids to tidy up
• I am thankful that I can hardly type because Sammy has just sat down next to me, pinning down my right arm and chattering away as he plays his allotted time on the Wii 

There are so many other things I take for granted too often these days but I am reminded just how lucky I am today.  I am with my boys, I'm about to make a dish to take to the family gathering, and I am complete....not sane by any means (but that is because I'm a mom).  

                                             Happy Thanksgiving one and all!  

Fun Times

Having spent the last post bemoaning the surprise struggle the first year off treatment throws at a family, I felt it fitting to also show how much fun it can be.  We have been busy living, as well as working out kinks, so here I would like to offer a glimpse into the good times:

New Year - Yup!

Well 2012 is upon us and Sammy is cancer free and off treatment.  I was reading back at last year's post and I hardly recognized myself.  It is amazing the toll the last year has taken, despite my very optimistic outlook and resolve to make it a good one.  Fail!!!!!  Read here to see what I said a year ago.  

We had a lovely New Year's Eve at a very close friend's house.  We all stayed over so as to be safe from the drunks on the roads.  We all drank enough to consider it a special night, but no hangovers anywhere!  I, however, slept in until midday as I was so wiped from the night of merriment...my body just ain't working for me at all!  

New Year's Day brought a new ‘treat’...Sammy had a fever of 102.7.  Now just two months ago that would have put me into a catatonic state...and led us straight to the ER...do not pass GO, do not collect $200!  But, now that Sam is off treatment and his port is out, he can be treated by his regular practitioner.  That took a bit of getting used to.  Of course, I called CHAM anyway, just to make sure.  They told me his blood counts had been great on Thursday and there was no reason for them to see him.  

Two days later we got to see the pediatrician (holidays can be such a pain).  Reviewing the history, the doctor decided to take no chances and ordered a full CBC (complete blood count) and several tests for blood pressure etc.  

The strangest thing was, we were in room 13. Sam was diagnosed on the 13th...our lucky number as he would have died had we not caught it when we did.  Yet I had a minor freak-out that it was all happening again...we would be lucky to find it again so as to save his life in room 13!!!!

I remained calm but realized that any small anything was going to induce a terror within that would grip my insides like a vice.  Even the doctors would not just treat as 'normal' but run tests just to be sure.  New Year was a new normal.... off treatment, no CHAM each week, less testing, more "I wonder if..."  

Sammy is still off school as his fever remains and he now has a sore throat.  All part of any school kid's run-of the mill illness.  But I'm looking hard at his glands, checking for petechiae, watching for bruises, and noticing every moment his energy level is down.  

Sammy is sick of being ill.  He has had enough.  He want’s to run and play but the late effects are kicking in and he has mobility issues with his right leg.  This wonderful, brave, and resilient boy is ready for some time off.  He deserves it more than anyone I know.  

I am no longer saying, "At least it is a normal illness this time."  Because it is not fair that Sammy has to feel bad yet again.  I'm not finding the positive outlook is working anymore.... gosh, it has run me into the ground...but most importantly, I am pissed off for my son.... he needs to have a break!  Give my son the gift of good health and leave him alone for a while!