The worst is over. Those words are like the soothing sound of a steady rainfall on a warm summers eve.
After almost two weeks of anxiety and fear of Xavier's brain surgery, I can finally relax. It is over and he is doing amazing.
This almost 5 year old kid has been through more than I have with 26 years on him. And still, he smiles, laughs and plays his little heart out. Not even a week after surgeons opened him up again, removed scar tissue in the 4th ventricle of his brain and took out a vertebrae in his spine, Xavier is walking, talking and just being a kid again.
This past week has been a roller coaster of emotions, but above all has once again shown me how strong my little boy is ... and how strong I can be when I have to.
There were moments when I thought I couldn't do this again - spend nights at his bedside in hospital, watch him suffer and see his painful scars. But with so many amazing people around me, and the extraordinary care by doctors and nurses at McMaster, I did it.
The experience, albeit horrible, wasn't like last time. This time when we left the hospital we knew we didn't have to go back for treatment. It was done.
Now that I have finally gotten the chance to take a breather I wanted to jot down some of the most memorable moments like the 20-minute tantrum to put a hospital gown over his pjs and when his big blue eyes lit up at the mention of popsicle!
1. The gut-wrenching, tear-jerking moment when Mark walked Xavier into the operating room and Xavier looked at me and said mom, I love you.
2. Sitting in the OR waiting room that we spent 12 hours waiting in 4 years ago to realize nothing had changed except a couch was replaced and the pop machine moved to a different wall.
3. Seeing the surgeon come into the OR waiting room and take us into the little room off to the side. This room is where we were told 4 years ago his tumour was wrapped around his brainstem making surgery extremely dangerous. Instead, this time, his surgeon was smiling and you could feel the high he was feeling after completing a successful surgery. They had found a complete blockage of CSF in his brain and were confident this would solve all of his symptoms.
3. b. Learning that Xavier had asked for his bee blankie after waking up before asking for mom or dad!
4. Running into the same staff that were involved in his care 4 years ago.. and them still remembering Xavier. One even came into ICU after reading his name on the surgery board as they were concerned why he was back in the hospital. Amazing! They treat so many children but still remembered him.
5. The feeling of sadness when Xavier was transferred out of ICU and into the chemo ward. So many memories came flooding back as we saw the nurses in blue gowns administering chemo drugs to babies, young kids and teens. I felt so bad for those families, knowing exactly what they must be going through.
6. Overhearing two younger parents in the washroom complaining about drama with their baby daddies and how they want to fight this person and that person. This almost made me sick to hear... their child has cancer and they are so consumed with their own lives they can't concentrate on what their poor child must be going through.
7. Xavier walking!
8. Going home!
There are so many moments I could list including the night I spent with Mackenzie at Ronald McDonald House ...I missed her so much and the strength and maturity she has shown during this experience should be rewarded! She has been an amazing sister to Xavier since he came home.
In three months Xavier will have another MRI to determine how successful the surgery was. I am not worried. I know they did a great job and by then this will all be a distant memory.
I am breathing easier tonight.
After almost two weeks of anxiety and fear of Xavier's brain surgery, I can finally relax. It is over and he is doing amazing.
This almost 5 year old kid has been through more than I have with 26 years on him. And still, he smiles, laughs and plays his little heart out. Not even a week after surgeons opened him up again, removed scar tissue in the 4th ventricle of his brain and took out a vertebrae in his spine, Xavier is walking, talking and just being a kid again.
This past week has been a roller coaster of emotions, but above all has once again shown me how strong my little boy is ... and how strong I can be when I have to.
There were moments when I thought I couldn't do this again - spend nights at his bedside in hospital, watch him suffer and see his painful scars. But with so many amazing people around me, and the extraordinary care by doctors and nurses at McMaster, I did it.
The experience, albeit horrible, wasn't like last time. This time when we left the hospital we knew we didn't have to go back for treatment. It was done.
Now that I have finally gotten the chance to take a breather I wanted to jot down some of the most memorable moments like the 20-minute tantrum to put a hospital gown over his pjs and when his big blue eyes lit up at the mention of popsicle!
1. The gut-wrenching, tear-jerking moment when Mark walked Xavier into the operating room and Xavier looked at me and said mom, I love you.
2. Sitting in the OR waiting room that we spent 12 hours waiting in 4 years ago to realize nothing had changed except a couch was replaced and the pop machine moved to a different wall.
3. Seeing the surgeon come into the OR waiting room and take us into the little room off to the side. This room is where we were told 4 years ago his tumour was wrapped around his brainstem making surgery extremely dangerous. Instead, this time, his surgeon was smiling and you could feel the high he was feeling after completing a successful surgery. They had found a complete blockage of CSF in his brain and were confident this would solve all of his symptoms.
3. b. Learning that Xavier had asked for his bee blankie after waking up before asking for mom or dad!
4. Running into the same staff that were involved in his care 4 years ago.. and them still remembering Xavier. One even came into ICU after reading his name on the surgery board as they were concerned why he was back in the hospital. Amazing! They treat so many children but still remembered him.
5. The feeling of sadness when Xavier was transferred out of ICU and into the chemo ward. So many memories came flooding back as we saw the nurses in blue gowns administering chemo drugs to babies, young kids and teens. I felt so bad for those families, knowing exactly what they must be going through.
6. Overhearing two younger parents in the washroom complaining about drama with their baby daddies and how they want to fight this person and that person. This almost made me sick to hear... their child has cancer and they are so consumed with their own lives they can't concentrate on what their poor child must be going through.
7. Xavier walking!
8. Going home!
There are so many moments I could list including the night I spent with Mackenzie at Ronald McDonald House ...I missed her so much and the strength and maturity she has shown during this experience should be rewarded! She has been an amazing sister to Xavier since he came home.
In three months Xavier will have another MRI to determine how successful the surgery was. I am not worried. I know they did a great job and by then this will all be a distant memory.
I am breathing easier tonight.
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