As a quick update our lives have gone pretty smoothly over the past month. Gracie continues to go back and forth between great energy to sleeping a ton. This is always worrisome for us as fatigue was an indicator that something was wrong in the beginning, however Dr. Ron and her medical team continue to reassure us that she is doing great. We are still unable to go to any playgroups, daycare, schools and the like due to her being still on an immune suppressant drug (Cyclosporin), which she will hopefully end in January but this will be a wait and see approach. Gracie continues to be weaned off the steroids and she is now looking more like a two year old than a baby Michelin man. Her eating has subsided and we now have the same struggles as all parents of a two year old as far as eating goes. Her weight is now down to a healthy 13 kilos.
This Wednesday will bring us to another bone marrow aspiration where we will test for signs of HLH (which is the hemophagocytosis that she developed early on and reoccurred in May of this year). When we received our good news I was elated for a moment but reality sets in and I went back into the Doctors asking "what is the but?". Dr. Ron advised that there was no but....there is always a "but". Seventeen months of prognosis has taught me there is always a "but". So far the "but" is only the continuation of the Cyclosporin and the upcoming bone marrow aspiration. Sometimes us parents can have a misplaced belief that somehow the thick of the journey is over. And then oftentimes it is the news of another that awakes us to our undesirable place. This will always be in my mind and heart and I wonder if this ever goes away?
So as we wait, again, for results of her biopsy on Wednesday I wonder, can we get so "lucky" twice in one month? Our next steps after that is that Gracie will have to undergo some pretty heavy dental surgery at the beginning of December. All of this has left her teeth in pretty bad shape so she will have to have 3 or 4 removed, depending on the extent of the damage. This all seems small in comparison, but more testing and surgeries always bring anxiety for parents, no matter what the extent of the procedure is.
We continue to be normal and are loving every minute of it, even if it brings temper tantrums, food struggles and sleepless nights, we welcome all of the "normal" with open arms.
These are the things that I know for sure I will never take for granted again...the strength and unconditional love of my Sisters, the rally factor of family who you had thought forgot you existed, the unbelievable power of great friendships, the ability of people you barely know to become the champions of your journey, the unwavering hope and strength of all the children who fight this fight everyday and still have the power to make your heart shine and your soul sing, the unselfish caring of the medical staff who come to the front lines with you and stand united in the line of fire, the Grant Skalks of the world who because of the way they chose to live their lives they will always be hero's and finally for the unconditional love of a little girl who has made me see that everyday is a good day and that stinky feet are hilarious, I will stand by you and behind you forever; I will never let go.
It's a good day...
Much love,
The Sterks..
I read an article the other day of a mother who had a child with a disease that there is no cure. He will never make it to age 4 she said how do you parent a child who has no future...it was awesome...she reminded me that the here and now are most important. Every good thing and bad thing...i was most grateful to be reminded of that...I can't imagine what you have had to go thru but i read Gracie blog and cry when your sad and smile when things go well, I tell everyone when its good and when its not. We are all waiting with you for the good news we hope and pray will come. You are not forgotten by me or my friends who ask Hows Gracie today....please remember just cause we are not there physcially we are their standing behind you every step of the way spirtually. Lots of love from Ontario.
ReplyDeleteKnow we are all continuing to pull for all of you each and every day - even if we don't always add a note or send a message. Keep on living life.....even those stinky feet!
ReplyDeleteLots and lots of Love
Linda and William