Amazement and anger
After a bit of an up and down start to this continuous IV immunotherapy - Blinatumomab - things have settled out and we have been enjoying a bit of a reprieve from the intensity of harsh chemo and Emma feeling really crummy - that is to say - she is feeling pretty good these days.
She has gotten used to having her chest port accessed (needle in, hooked up to the IV medication, which is in a cute backpack that the hospital gave her) all the time, although the weekly port needle changes are still hard. And the best thing is that, in between cycles (as of Friday/yesterday afternoon!), there is a week-long break, so Emma will be de-accessed (needle out of port) and she will be able to be free of the backpack and be able to go swimming! It will be a really nice mid-summer break, so fingers crossed that all goes smoothly with no unexpected illnesses or hospital encounters.
I've been struggling with trying to stay in the moment of these relatively good times vs. looking ahead at what is to come (stem cell transplant). There are practical things that need to be thought of and planned, and then there is looking ahead and trying to predict or control how it will play out, which I know is wasted energy and worry, but sometimes that is what happens for me. The months in Toronto will be hard - we will be cast back to dark times with potentially awful side effects and potential for complications that make my head spin. But I also know that Sick Kids is a world-renowned facility, and we will be in good hands. I have to trust the process, control what I can control and leave the rest to play out. Easier said than done of course.
I want to be realistic about what it will look like so I can manage expectations (mine and Emma's etc...), but I do have a tendency to catastrophize and go to worst-case scenario. It must be protective as, if I can go there and imagine the worst and it turns out to not be that, then I feel like it's a win! But in the meantime, it means that the anticipatory anxiety in thinking of the myriad of possibilities is making me a bit of an anxious mess at times. Story of my life magnified x1000.
Anway - on to the amazement part.
Emma. They tell you all the time 'kids are resilient' and what does that even mean? Well, let me tell you - Emma has moved through this with tenacity. Going through the first many months of the intense chemo regimen for ALL (acute lymphoblastic leukemia) is something that resembles torture. It strips you down to the basics: sleep; eat (if you can between feeling nauseous and being NPO for procedures); void and poop; and just get through it. No child should ever have to go through it. But go through it they do - in the thousands. There have been very tough days, but her spirit is always there. Cheekiness and joy at the things she loves. And those things have become vitally clear: animals, horses, art. For her Make a Wish wish she is going to ask for a horse. And what can Chris or I say but YES - we will figure it out! We have time to research how to go about this and what it means, but if that is her ultimate dream, then that is what we will work to make happen.
Alex. He has seemingly adjusted to our new current way of life quite well - this is mostly due to the amazing job that Chris does in keeping things as normal as possible for him - summer camps, soccer practices and games, play dates etc... does he get a lot more screen time than I ever would have imagined? Yes - but whatever. He seems happy, though of course he will come up with thoughtful and heartbreaking questions - 'why did this have to happen to Emma?'; 'when will her hair come back?'. We are always vocal in telling him that it was nothing he said, did or thought that related to Emma's leukemia - they say that siblings can think that and hold on to that thought, so I can only hope that by refuting this notion out loud, he can know that it is not true. He is so considerate and cautious with Emma - he is a very kind and thoughtful brother, even though he feels it unfair that she basically spends all day on a screen and he doesn't. It won't always be this way.
I know the best way forward is to focus on the positives and I know there are many. There is much to be thankful for. But I would be lying if I didn't recognize the anger that simmers away. Anger that this has happened. That in the sliding doors of life - living with leukemia and the fear of it - is our reality now and for a long time to come. I'm angry at all that Emma has missed out on and will miss out on. That doesn't mean that we won't make the most of what we have and embrace the altered versions of normal, but there is anger and grief at what we had expected and what is currently happening. That is more of a parent perspective I suppose as kids don't tend to have the same ability to imagine how life was going to play out. Angry that we have had to adjust to so much awful-ness and will never again go back to anything that resembles life before. BUT within that is the silver lining - how amazing the 'normal' things will be once we get there. Like going back to school. Being allowed to ride a horse. Having a pony tail. All of these things that are so simple will become breathtakingly amazing. And that is the crux. The in between of being trapped in this - the wins will be exponentially more rewarding.
Next Friday Emma will get hooked back up for round 2 of Blina (28 day cycle) as well as have a bone marrow aspirate, which will tell us if the first round of Blina has put her into remission (how we have hoped to hear those words since day 1). The best way to enter into transplant is in remission and Blina is a very good medication to get us there (but it won't keep it there, hence the transplant). In the meantime, we will try and enjoy this week off and take things as they come.
Thank you again for thoughts, prayers and positive vibes. Stay tuned for ways to contribute to the upcoming Toronto trip, and as always - consider donating blood and/or registering to be a Bone marrow donor - see Canadian Blood Services for more info (Canadian Blood Services | Canada's Lifeline).
Also - check out Emma's YouTube channel, she has been busy making cute little videos!!
((6) Fxiryhorse - YouTube)
Comments
Post a Comment