LITTLE D BY LINDSAY*
We tried for months to find out what was wrong with our son. His weight dropped, he stopped meeting milestones and he continued to regress and deteriorate to the point where he looked like he did not even want to go on anymore. We stressed and searched and finally 10 months later, after numerous tests and procedures, an MRI finally gave us our answer. “Your son has a tumour in his spinal cord. The tumour is very large; it starts at the top of the spine and goes approximately halfway down his back. We will be operating in 10 days and you need to get him to gain as much weight as possible before then. I know this is a lot to take in. Do you have any questions right now?” “OK” is the only word that escapes my mouth. Everyone leaves the room; we both sit there and stare straight ahead, we stare at each other, we stare at our son and then we cry. My ears are ringing and I have one of the worst migraines ever. I feel very alone. My marriage has been unravelling from the previous months of stress; I am 27 and pregnant with our third child, who is due to arrive in less than a month from this exact day. The next 10 minutes are full of crying and a few short sentences. Oddly enough I feel relief. We finally have an answer and they are going to fix our son.
The next 10 days somehow fly by yet still feel like an eternity. We don’t talk about the surgery; we enjoy every minute we have together. Tomorrow morning is the big day. My nerves are starting to rattle and I am feeling more anxious as I listen to the clock on the wall tick away. I don’t sleep at all; I sit in a rocking chair holding our son as tight as I can. I just stare at him and pray. At seven in the morning – all too soon – they come for us. During the surgery minutes in each hour feel like an eternity. We receive word halfway through the surgery that everything is going wonderfully, as well as can be expected. I continue to pray. We are finally able to see our son in PICU nine hours later. We are warned what to expect: tubes, machines, equipment. I am not shocked by any of it, I am just so thankful I can finally see him again. The first few nights are awful. The worst part as a mother is not being able to pick him up and hold him. I feel completely helpless and beat down.
Your son has a tumour in his spinal cord. We will be operating in 10 days and you need to get him to gain as much weight as possible before then. I know this is a lot to take in. Do you have any questions right now?
As the days go on he continues to get better and he is able to move from PICU up to the unit. Three weeks later we are finally home. Life is so busy, appointments are the new normal, rehab is just part of our daily routine, and we spend a lot of time in the car. After nine months of gruelling rehabilitation our son is walking, pushing a walker. It is truly amazing.
A follow-up MRI shows the tumour is growing back and we learn that at the age of 18 months our son is going to have surgery again. It feels way worse than it did the first time. I am scared, but mostly I am angry. I am so angry that my son has to endure this situation not once, but twice. The surgery is another very long surgery, and just as hard on everyone as the previous one. There are more complications during the surgery than the first time, and we have more to deal with after the fact. I am relieved the surgery is behind us and we can move forward to the next step: rehabilitation. Our son will walk again, I am very confident of this. We are told that because of all of the complications during the surgery, he is no longer a candidate for more surgery and if the tumours come back our only option is radiation.
Two months later my heart is ripped out of my chest for a third time. I know without a doubt that the tumours are growing back. It is confirmed in our clinic visit and I am hit by an imaginary train at full speed. This is our last hope, the doctors tell us. If this does not work, we are out of options. He goes through 28 high dose radiation treatments and is so sick he is hospitalized for four weeks. In everything he has been through I have never seen him as sick as he is now. My heart shatters into a million pieces. I feel completely helpless. I feel guilt – how could I, as a mother, let my child endure something so horrible? But I know in my heart this is truly going to be the answer to our prayers. I know it to be true with every fibre of my being.
Our son has been cancer free for two years and two months! It is amazing to know in your heart that cancer is no longer plaguing your child. It’s amazing to see how far he has come and how far our entire family has come.
* Name withheld
