When we were at Sick Kid's in Toronto we met a couple of other families who had babies with Severe Combined Immunodeficiency. It is not normal for there to be three families with SCID on the Bone Marrow Transplant Unit at the same time but early last year there were. Each child had a different form of SCID and as a result, the other two's treatment would be a bone marrow transplant. My wife became good friends with both mothers as they were literally the only people that she knew who could conceptualise what she was going through with Parker.
Both children have now had their transplants and both families have been rejoicing the past while that they
I had mentioned over a month ago that we were so excited about Christmas this year because we were going to get to spend it with family. Parker was going to be going to his Nonna's and would be able to see his aunts, uncles and cousins on Christmas Eve.
Sadly, it was recently decided that this would not be a viable solution. Family is sick, and the risks are just too great with Italy just around the corner. Of course my wife is quite upset, and I am disappointed to say the least as we were looking for some normality around the holiday season. However, what has grown normal for us and the ones around us will continue to be just that throughout this holiday season.
It is a week before Christmas and both families who had planned to be home for Christmas will unfortunately not be. One of the drawbacks of having a bone marrow transplant is something called graft versus host disease (gvhd) and it can have extremely devastating effects if not treated correctly. GVHD has unfortunately taken its toll during this holiday season and has caused these families to spend Christmas in such a way that has grown normal for them over the past year.
5 comments:
Hey Parker,
I know how disappointed everyone is that we are not going to be together this Christmas, but I am a firm believer that things happen for a reason. We only have a short time before you go on your new journey and we cannot jeopardize this in any way.
We may not be together in body but I know that everyone will be together in spirit.
Stay strong Big Guy.
Love you tons.
Nonna & Nonno
p.s. Loving your smile.
Dear Parky,
We are so disappointed about Christmas Eve...we've all tried so hard to stay healthy, but I guess at this time of year is difficult. Hopefully we'll all be 100% by Xmas, so that we can pop by and say hello and drop off presents!
Your mommy and daddy just want you to be super healthy for your big trip to Italy, which we all completely understand! Don't worry, Santa will bring by lotsa wonderful things for you to play with and make noise with come Christmas Day.
Love you lots!
Always,
Auntie Christini and Uncle Mikey xo
Hey Parker!!!
Just checking in to see how the cutest little man ever is!!!! You look great!!!
I hope Snata knows to spoil you big time ..hehehe
HUGS,
Stacy
PS...Mama & papa K - you guys look AWESOME!!!
No long now little guy. Santa is right around the corner. Make sure to let him have the whole cookie and milk. I know you're tempted to have them for yourself you growing little monkey!
See you soon,
lots of love
Uncle Michael
Hi Parker!
It's my first Christmas, too! I know that Santa will leave you lots of presents - but remember that the best present is something you already have - awesome parents who are keeping you safe and healthy so that you can go to Italy and come back even stronger, healthier and with lots of stories!
I hope that you have a great Christmas! I bet you can't wait!
Love, Calder (and Calder's Mommy)
*BIG BEAR HUG*
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