Monday, 31 October 2016

The aftermath is MESSY

We are on the road to recovery! 

Physically, Xavier is improving daily with his regular physio and pure determination only a child possesses. He is learning to walk again and use his left side, all while building back the muscle he lost. He has at least another month of treatment left, but we are so fortunate we can manage it at home and at a dose that causes fewer side effects than he faced last month. 

Xavier is determined and I admire that in children. The lack of self-pity in kids we have seen on his cancer ward are so inspiring. Instead they use that energy to heal, and set goals for recovery.  

Still there are residual symptoms that are concerning. He is choking on liquids more frequently, suffering from reflux and is unable to move his toes on his left foot. Seems minor but as he tries to walk now his toes curl under his foot and trip him. Who knew how important straightening your toes are! 

But the lingering side effect of treatment is always the emotional scars. We know because we have done this before. The aftermath is messy. And it is much harder for others to understand when on the outside things are looking good. 

It started with my daughter. When the dust settled and the height of our chaos was over, she fell first. The uncontrollable tantrums. The inability to play with her peers and her low self-confidence. This all followed months of sleepless nights, fearing her brother was dying. 

Then I fell. After months of holding it together and staying strong for the family I reached my limit. My energy level diminished and I just want to sleep all day. I have no interest in socializing and it's so much work just to move my body. Then the flashbacks. No matter how much I try to push them out of my head, the traumatic events, the devastating words from the doctors keep replaying in my head. The emotions associated with them are exhausting me. 

Now Xavier is showing signs. It happened before. It starts with the nightmares, his own flashbacks of the medical trauma. He wakes up angry and unable to go back to sleep. The memories haunt him at dark. He becomes increasingly angry (this time not from the steroids) but the surmountable emotions flowing within him he cannot explain. He worries. A lot. He worries he will never get better. He worries he will have surgery again.  

I just wish I could take the pain away. 

We are still grieving our old normal as we try to accept once again our new normal. I often find myself longing for May when everything was great and Xavier just learned to ride his bike without training wheels. I look at him now. Fragile. Barely able to walk let alone ride a bike. 

But I tell myself, we will get there! We have done it before and we will do it again. He will surprise his doctors with his recovery once again and life will be even more beautiful than before because of the bonds and lessons learned from this experience. We only get better! There is no other direction. 

Sunday, 2 October 2016

How imminent death turned to hope

Six weeks ago my husband and I were given news that would make any loving parent crumple up into a ball of despair. 
Your child is dying. 
On August 2 a trusted surgeon who has seen us through our seven-year battle with our son's cancer reluctantly gave us the news. His tumour had doubled in size within two months. The cancer was angry. The last round of radiation only fuelled its furry as it aggressively invaded Xavier's brain. 
Our only option was surgery to temporarily relieve his symptoms as he would suffer a terrible death from brainstem deterioration. 
Imagine having to digest this news as you sleep on a chair beside your ill child in hospital. 
We spent the weekend in mourning. 
By Monday his team of doctors, including his radiation oncologist, surprised us with another possibly theory. 
The tumour may not be cancer at all. It may be a mass of decaying brain tissue severely damaged by radiosurgery. 
Reluctant to believe this was the case, we continued to process the fact our son's life was limited. We may only have months left to enjoy any quality of life. 
We started planning his funeral. 
Xavier headed into surgery and we were referred to the palliative care team at McMaster.
Surgery was unsuccessful and yielded no more answers than the initial MRI images (which we saw) clearly showed a large mass between his brainstem and cerebellum. 
We grieved some more. 
His condition deteriorated after surgery. He lost all mobility. The high dose of steroids to control the brain swelling stole him from us. We had lost our boy already and had only limited time left. 
Our hope in the theory this was a treatment side effect and not cancer faded. 
After six stomach-twisting, head-splitting and heart-throbbing weeks, we got answers.
Xavier was not dying. Instead, he is suffering from a serious - sometimes fatal - side effect of radiation treatment. On top of that, his shunt failed and he was experiencing extreme side effects from treatment of the treatment of the treatment. Yes you read that right. The cancer treatment caused the problem which led to another treatment that caused other problems which required more treatments.
The reality is the treatment for cancer is just as dangerous as the cancer itself. But in our case with no more options to treat his cancer, the treatment side effect is a blessing. 
And as ecstatic as we were to get this more positive news we are cautiously optimistic. We have been on this roller coaster long enough now to know the dips, twists and turns of the ride. With his type of cancer, cells could easily be sleeping and wake at any time. They have been known to sleep for much longer than other cancers - which is why we will never hear the words he is cancer free. Rather, we celebrate no active cancer. 
However, this tunnel has a bright light at the end and we are moving towards it, albeit slowly. 
Our day to day life did not change with the news it was not cancer. Emotionally a weight was lifted, however, we still look at our son and see a stranger. He still requires constant care, cannot walk or even roll over in bed at night and will receive steroid treatment for months for the radiation necrosis. 
These are the physical obstacles we manage daily, but there are far more emotional challenges. 
But we will face each day with a smile knowing we will now get to that day where things are better and Xavier is himself again. 

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