It has been over a week since Craig and I have blogged. We blame it on the fact that Nevan's good moods have continued and we are taking full advantage! He has started the CNS phase of his treatment and breezed through his first sedation. He woke up happy, ate a full bowl of noodles and we were home by lunch.... Just in time to eat another bowl of noodles!
We also got the amazing news that Nevan's bone marrow is doing it's job and his counts have sky-rocketed. His oncologist has given him the ok to leave the house and have some fun and that is exactly what we have been doing! He still can't be in public crowds especially indoors, so we have been taking advantage of the great weather recently. Picnics, nature walks, feeding the ducks at the park and fishing at Shades Mill. Today was the best day of all. Up until today, Nevan has been very weak on his feet, riding in his old stroller or wagon every time leave the house. Today, he decided he was going to walk.... So he did. He walked almost the full path at riverside park and was having a great time. Nylah also had a great time but didn't fare as well. Curious little Nylah, who needs to touch and examine everything possible, ran her hand across some wood and got 7 splinters in one hand... all deep into her baby soft skin. We have no idea how to deal with that one! Cancer we have a handle on... Splinters are a new one!
Last week was very busy with appointments, meetings, nurse visits etc, everyday was taken up with something. One of the more amusing things we did was visit Nevan's SK class to let them know why Nevan wasn't attending school. Nurse Claire from McMaster sat infront of 20 something wide-eyed little people all patiently sitting 'cris cross apple sauce' on the reading rug. As she explained why Nevan was away and what exactly cancer was, in particular that you can't "catch" cancer, hands were shooting up left right and center ready to share stories of when they were sick. The younger ones were plucked one by one as the velcro on their shoes or zippers on their sweaters became too hard to ignore. For the most part, they all did rather well. At the end of the talk Claire asked the boys and girls what they could do to let Nevan know they were thinking about him. Some kids recommended cards, others stories, one little girl very excitedly shared her thoughts ... " I could give him 12 dollars!"... Hilarious! One little one insisted that when he was done his card he would come to our house and put it through Nevan's window. What started out as a rather emotional visit for Craig and I, turned into a huge reminder that Nevan will be just fine. Children are innocent and inquisitive and find amusement and joy in places adults wouldn't even think to look. Although Nevan has no idea, he has been the one helping us through each and everyday... Our emotions mimic his, and he can break even the most stressful moments with one of his funny lines.
Next week, Nevan will go into the OR to have his PICC line removed and a Central Port put in. We have been waiting for this moment for a long time. Nevan has stopped using his right arm and has become very protective of it. The skin under his dressing is thin and raw and comes away with each peel of his bandage. This surgery is a very welcome one and will improve Nevan's quality of life even more. We will also begin to train Nevan to swallow pills so that once he gains a bit more weight, he will also be able to have his NG tube removed.
As the milestones in treatment hit, we know we have made it one step futher to completing Nevan's 2 years. We are trying to get through life right now by hopping from one good moment to the next. Using memories from the past and anticipation of the future to get us through the rough times. While these times are much easier than a few short weeks ago, there are still times when we look at each other and wonder how we ever got here. Like when Nevan has an emotional breakdown because he isn't served the style of chicken he was craving and then lets us know that "he hasn't been feeling like himself lately".
When I was in my early twenties, I drove to from Cambridge to London everyday for work... sometimes as early as 4:30am. In university, I would go out multiple times a week and come home very early in the morning only to cram for an exam that I had later that afternoon. When the kids were born, I never did the 'sleep when they sleep' thing. I would be wide awake and functioning just fine on 2 hours sleep day after day. When I look back at all of these things, I wonder how in the world I ever did that... put in any of those situations now, I am not sure I would be as successful. I think 3 years from now, Craig and I will look back at this time in our lives and think the same thing. How did we possibly do that and come out on the other side!? People have commented on how strong we have remained throughout these past weeks... we always look at each other and wonder what else there is? What is the alternative? How else would we deal with this situation? We wonder what people expect to see when they meet us. And then we walk past the hallway to the Pedatric Intensive Care Unit and we watch all the parents camping out in the waiting areas, laughing with each other to ease the tension and living on cafe food for weeks at a time. We talk about what they must be dealing with, how strong they must be and how we aren't sure we would be able to cope the same... we get it. But we would cope, and so would anyone else in their or our situation. Because not to be strong is to give up... and that isn't even a choice.
There is a saying that graces many of the cancer awareness posters out there: "We don't know how strong we are, until being strong is the only choice we have".... so true.
Cute Story of the Day:
Craig was watching the kids while I was doing a bit of cleaning and sorting around the house. Nevan came over to see let me know that lunch would be ready soon.
Nevan "Mommy! Daddy's cooking, come sit down soon"
Me: "What is he making?"
Nevan: "Mac and Cheese"
Me: "Oh, is he making you Kraft Dinner?"
Nevan: Laughing at me..."Mommy its the middle of the day! He is making Kraft Lunch!"
Me "Silly me! ok then, lets go have Kraft Lunch!"
Needless to say Kraft Dinner is not a common meal in our house! lol
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