19 August 2012

Falling from cloud 9

This has been a long week. I wish I could say it was un-eventful. On Tuesday, Keian went into the Oncology clinic for the day to mark the start of his Phase 2 Chemo (Consolidation). As always, he was the bravest of brave - the day began in the Procedure room, where he was sedated for his Lumbar Puncture and IT Methotrexate injection into his spinal fluid.

Throughout the day, we noticed some changes in Keian. I told his Nurse numerous times that something was "different" about him. His speech was very slow and shaky. He was having tremors and ataxic movements in his arms, legs and head. I described it as a bobble head appearance. They would watch him and say that everything "appeared" normal. At 4 pm, we left the hospital and I rode in the back of the truck with Keian. Almost immediately, I realized there was a remarkeable increase in these symptoms. I called our Clinical Nurse and described the differences - she suggested that over the next 30 minutes we watch him to see what happens and then to call her back. By the time we made the treck home from Vancouver, we were feeling very uncomfortable with what we were seeing. It wasn't our Keian. Another call into the hospital, but this time to the Oncologist on-call. She wanted us to bring Keian into the ER at Children's. Once we were admitted to the exam room and the Oncologist performed a neuro exam, she said she didn't feel comfortable sending us home and she wanted to admit him.

We were admitted that night and he was on close watch - being woken up every 90 minutes for the nurses to do a full exam of his state. They chose to contact Neurology, who then came to conduct their Neuro exam. There were 2 Neurologists. After spending at least 60 minutes to complete a thorough exam, they told us that all the findings were "normal". They continued to attribute the tremors can be caused by some of the chemo meds, but that his apparent slow, shaky speech was because he was shy. Wow. Our boy is definitely shy, but NEVER around his parents. The findings may be normal for other children, but it was NOT normal for our Keian. I asked what we were going to do, since their "findings" were apparently normal. I felt like I was being looked at like I was an overprotective mother who was off her rocker. She loosely made reference to a possible MRI, but that given Keian's age, he would need to be put under General, so that he would stay perfectly still. We assured her that we want the MRI done, but that we did not feel he needed to be put under. I almost got the impression that she was trying to talk me out of demanding the MRI, by making me feel I was wrong for subjecting my son to another bout of General.

The next day, he was taken for the MRI, with no General I might add (they didn't even have to tell him once to stay still). I really believe that he handles these things better than we ever could. I also believe that the attitude and positivity that we exude helps him to be as strong as he is. That is my goal - to make this whole journey as positive and comfortable for him as we possibly can. He deserves that from us.

After spending 4 days in the hospital this week, we finally got the MRI results. I urge all parents reading this to always trust your gut when it comes to your kids. You are their best advocate. After being told that the findings were all normal, even though his symptoms persist even to this minute, the findings on the MRI were hard to argue. There were mild changes noted, as well as inflammation in his brain. They assure us that since it was caught early and the symptoms were considered mild, in their opinion, it would be temporary. The symptoms will persist for some time, but will eventually diminish. Keian's diagnosis - Methotrexate induced neurotoxicity. They will need to remove the IT Methotrexate from his protocol and replace with another drug that can be just as effective at eradicating any remaining leukemia cells that remain in his CNS. We will continue to focus and stay wide awake.

I've always strived to be kind hearted, but Keian makes me strive harder. I feel I need to make a difference...and I will.

You encourage me to be the Mother you are so incredibly deserving of my beautiful boy. You, "Joreo" and your Daddy are the best boys I could ever ask for - I am so lucky <3

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