I write this as I am on my way home from southern California from a business trip…..just a couple of weeks ago going through Denver, at the same time, is when Peter suddenly tanked. I’m nervous! Peter had labs yesterday and his ANC was 1400. Today he went in for his Vincristine infusion. Admittedly I am slightly on edge but I know too that Peter seems to take the 7-10 days to let the chemo float around in his system before bouncing back or tanking – so we will be watching him closely.
As usual, John took Peter in for his appointment. Yesterday was the day that Peter’s case was presented to the leukemia conference in Denver. I’ve been anxiously waiting for the outcome of this hoping that we can make some tweaks to protocol to help Peter stay healthy. I really felt like we were all in agreement that some customization was needed for Peter. The outcome – as I understand so far – is that the goal is to get Peter back to 100% of chemo dosages per the protocol with no adjustments. The concession is that the period to increase from the 50% we are at now, to the 100% will be “taken slowly” and that Peter will be “watched closely”. I snuck out of the meeting I was in to talk to John and get this information. Honestly I wasn’t sure if to scream, cry, or do both! John stated that he argued our case as best he could knowing my concerns and what my reaction would be to this – but the response was that based on the ten minute discussion on Peter, the opinion was that the risk of relapse was greater than the risk of infection. Can I say I feel like crying just typing this? Peter has spent so many times in the hospital because of infections – most of which were out of our control. However, as they pointed out to John – if Peter relapsed and in conjunction with his Down syndrome, his chance of survival would be small. Given that the raw emotion of having my child on a ventilator for weeks and being told he would likely not make it – I continue to fear death by infection more than death my leukemia for Peter.
Right now I feel trapped! My mind is spinning. We’ve tried hard to keep Peter healthy but he can look great on the outside and have no white blood cells on the inside and in essence no ability to fight off anything that comes his way. We are a family of 8. We have made changes to reduce our chances of infections but short of putting a bubble over our house and never letting anyone in or out or putting Peter in cave to live alone – we can’t avoid everything. So many times we heard to take precautions, but keep life as normal as possible – that is what I feel we’ve done. Peter needs socialization, physical activities, education, adventure – as do all my kids! You should see how much he enjoying the swimming pool – he might just have a personal goal to become a prune! We are 18 months into treatment. We have 18 more months to go. Sitting here today they feel like an eternity. I believe it is by the grace of God that Peter has made it this far – and at this point I am feeling it will only be by the grace of God that he will make it another 18 months and beyond.
It is days like today that test my resolve. A few weeks ago I talked about practicing how to “navigate” life; about enjoying the present and filling life to the brim with scuffed pink party shoes like G. I have been taking the advice of my mentor to work on communication, priorities, lessening the guilt – in essence navigating! I talked to my mom and told her how I envisioned myself a little tug boat sailing the ocean. I can’t control the waves but I can navigate them with my little compass of what matters….also challenging myself to not be so focused on my destination that I am not enjoying today. I’ve been making changes at many levels so that I don’t just sink at the dock. Some have been easy, some have been emotional. All for the better. Early this week someone gave me such an incredible compliment that it brought tears to my eyes – she said I lived life powerfully and purposefully. I felt so unworthy of it – but I reminded me how I want to live! I did once, I lost my sense of direction, and I am working my way back there …..one step at a time and darn it feels good!
Calls like the one John and I had today challenge that darn good feeling. My mind shuts down, my emotions get high until I shut them off and go into “commando” mode to tackle the issue at hand as if it was the only issue in the world. Hmmm…clue as to why I lose direction?! So thank you all reading this for being my virtual therapists! Just working through my thoughts to type this has helped me get clarity. I accept that we have two different opinions – we have medical opinion based on many cases and we have parental opinion based on single experience over the last 5 years. Breadth of knowledge vs. depth of knowledge maybe?! This is personal only to the extent that I know we all have Peter’s best interest at heart and we have different fears and thoughts on what to do. It is time to take a few deep breathes, gather our thoughts and keep communicating. Any pearls of wisdom are very much welcomed – so bring them on please!
We’ve all got your back Peter!