It is hard to believe our first month is DONE! One round down, five to go. (well technically 4 rounds because Aiden JUST got administered his second and we have 28 days till the next) And although I can not say this month did not have its ups and downs I can honestly say that it was survivable.
Overall Aiden tolerated the Chemo well enough but the first weekend was rough to say the least. I had no clue what to expect, what was a normal side effects and what should be concerning. He kept saying “I feel sick”. It was the first time I had seem him truly nauseous. Aiden has gotten sick millions of times throughout this voyage but it is very instant and more a tolerance to the feeds. He gets sick and feels better right away. We joke that he has mastered the “Puke and Go”. This was a lingering yucky feeling. He also had very bad belly, back, joint and jaw pains. Pretty much soar all over. I joined the “Oncology Parents of Easter Ontario” Facebook group shortly after Aiden’s diagnosis, and after posting my worries it was a refill to know these where common side effect and also got tips such as heat back for belly, morphine for extreme pain etc. Luckily I also have a cousin (thank you!) who lives very close and saved the day, bringing me Tylenol and ReLax as I called in desperation asking how far she lived. Within 20 mins she was at my door. As I opened the door I burst into tears so happy to see her. Because I am here with Aiden alone I had no way of leaving him to get anything and was not going to bring him out feeling so rough. I am much more prepared going into our next month! fBy the end of the weekend Aiden was feeling much better from a pain perspective and the extreme nauseous and body aches subsided.
I had wrote “Day 10” into my calendar, because this is the day that I was told his counts were to be the lowest (Day 10 post chemo). And like clockwork they were. His neutrophils were at 0.0.
“Neutrophils are a very important defence against most types of infection. When looking at your risk of getting an infection, doctors look at the number of neutrophils you have. A low neutrophil count is called neutropenia. (https://www.cancer.org)”
Aiden spiked a fever which brought us into emergency at 3 am, what I now call the witching hour. His G-tube was EXTREMELY soar and he was started on antibiotics for infection. After a swab of his noes (which was not a easy task) if was found that he also developed a common cold and on top of that had Diarrhea. This left us on isolation for the week and anyone entering the room had to gown up. The hospital is a completely different place on isolation. The walls seem to close in. It was a very hard week, but the doctor, nurses, child life, Camp Ooch and therapies were fantastic. From a MOM perspective it was almost a good thing being in the week. We got a lot of things sorted out, schedule for therapies, visit with phycologist, plan for a better feeding schedule and visit with the G-tube nurse. But the best part of staying a week was they started Aiden on a “trial” of a drug called “zolpidem”. It is originally prescribed as a sleep aid but had shown positive results in some cases of mutism, which Aiden has (I will be doing full post hopefully in the next couple days). Although it was one of the longest weeks ever eventually the antibiotics did their job and Aiden started feeling better and we were discharged on the Friday.
Returning to Ronald McDonald House we both immediately stretched out in the comfy soft beds, let our a deep breath and just relaxed. This place that we now call home, even at hospital Aiden says “I want to go Home”, meaning the RMH. The relaxation was short lived as Aiden spiked a fever on Sunday at 3 am and we went back into emerge. Because our life is just never simply I have also learned that Aiden has a high heart rate as a baseline (100-120+). When we have to go into emerge and they see the high heart rate with a fever it is concerning to anyone not knowing him. Also, his blood pressure tends to run on the low side so in the middle of the night when they check and it is low it raises concerns and then they start checking every 15 mins. (The great nurse we just had requested that parameters be set around the low pressure because he gets extremely agitated getting checked every 15 mins but unfortunately this was not doable. There is still the chance that the low pressure could mean something at a point in time so they don’t wait to miss it….understandable ). After some blood draws and monitoring and more sleep we were allowed to go “home” again in the morning. Aiden’s counts were looking good but if anything bacterial showed up in his blood over the next 24 hours they would call us to come back in. The Ronald McDonald house is about a 6 minute walk to Sick Kids (Exactly $5.00 cab ride) so it is very convenient. The rest of the month went smooth, Aidens counts were on the rise, he has more energy and we had a great visit with his brothers and dad last weekend. I have wrote all the ups and downs in a planner, documenting everything. I feel much more prepared going into the second month with the idea and hopes that there is a pattern.
People always ask if we need things to do or if we are bored but honestly between, weekly clinics, therapies and a couple visits from people our days fly by. The times that we are just sitting and resting, watching a movie or even just napping are much needed. Like in everyday life, downtime is so important. A time to find your balance to unwind and rejuvenate. I asked one of the doctors if a child could get too much sleep during treatment and the answer is no. The body is working so hard it needs time to heal to rest. I have found that around 3 o’clock my body and Aiden’s both need a break “Mama, lay with me” Aiden says and I do not hesitate or think of a chore that need to be done because right now there is nothing more important then these times to cuddle and rest. At these times I always feel a mothers guilt I feel like I never spent enough time with this one on one, there was always something needing to be done. Aiden would ask for me to watch him play his Monster Game or do something else and I would tell him just a sec or I needed to clean kitchen or laundry or I would quickly read a bedtime story so I could have a needed a break of adult time. I have learned there is a fine balance and I have debated it over and over. What do we give to our children, what do they deserve. Eventually they will grow up and move out and not want bedtime cuddles. The big this that has changed is that there is no more “just a seconds” as I have learned every moment counts and can be taken from you so quickly.
At one point in the month I asked another cancer mom, if it gets easier, how one day can be so great and the next just awful. Her reply was so beautifully honest,
“Somedays you think to yourself “I can’t do this, not for one day” and then you get up the next day and you do it anyway because you have no choice. Next thing you know you’v got 7 months behind you and its like Woah… If I can do that, I can do anything!”
We just keep moving forward because that is all there is, but there is also a good feeling about moving forward, we are progressing. I do look back on everything Aiden has done already, everywhere we have been. All the pokes, tests and surgeries and they seem like a distant memory. We are not going back to that very first MRI every again, when our world turn upside down, we will not have to experience the first surgery every again. Aiden is gaining his functions back, slowly but surly, they may never be exactly what they were but they will not be any worst then they are now. We have gone through the radiation burns and the hair loss and I look at all this and see the light at the tunnel. 5 months to go, less then what we have already done! As we get discharged today I hold on to the fact that we have now down 2 rounds, the side effects of the month are coming but 2 rounds down and I am better prepared. I am prepared for the gold at the end of the rainbow.
Aiden saw me typing today, saw me writing this “story”. I told him it was a story about him. I asked if he wanted me to read it to him and he said yes. I read him what I had so far and I could see him light up. It was scary reading it to him but also motivating at the same time. I told him I was writing a book of Aiden, and asked him if he wanted to know what it would be called. He said yes. I told him “Mama Outpost: Aiden Voyage” I asked if he knew what voyage meant, he shook his head no. I said a voyage is a trip, to go and explore, travel and discover something you never knew before, to a unknown destination. I told him that we are on a voyage we are discovering and exploring all the time and eventually we will find our destination and this will all be over and be an epic tale of his bravery. I told him I was writing a book to maybe help other families going through this too. I asked if he wanted me to read him more of his story sometime and he smiled and shook his head with a big yes. I smiled too. it was the first time I have wanted him to hear his story to realize how far he has come already. To know he is not alone in his feelings. I tell him all the time that if I could take this away from him I would, this is not fair and how sorry I am but also how amazed I am of him. It is a parents nature to protect their children, to shield them from the pain in the world for as long as possible. Being thrown into this situation my perception of protection has changed.
I know Aiden is 7 (Almost 8) but he is our first and I have lost the last 7 months with him, I do not know what a almost 8 year old is like. Sometimes I look at him and he seems so much older and sometimes needs the security of a 3 year old. I hope I write this and another mom can find comfort in the fact that I just do the best I can. I go with my gut the majority of the time and pray i make the right decisions for the future. Most recently, with Aiden getting more functions back, I strive to set limits so that when we are done all this I still have a half decent son. But I guess that is all any parent can ask for……
Below photos are a pretty good summary of the ups and downs….