At this point, we figured that we were going to be in for the long haul because at this point, he had 6 strokes and had cancer as well as still trying to figure out where the clots were coming from. Since the discussion of cancer treatments was on the table, I was starting to think about what kind of child care arrangements needed to be made for our 3 year old. The first few days, he was staying with my mom and my husband and I were trading off going home to get a decent nights sleep and to be with our 3 year old. One of us was at the hospital every second of the day along with a barrage of support. People offered to keep our 3 year old during the day and he was willing to go with people that he knew but once it came to people that he didn’t know, he was unwilling. I couldn’t blame him because he didn’t understand what was going on at the time. We decided that we didn’t want him to see his brother hooked up to so many machines and that we would bring him to visit once he got out of the PICU. We spoke with the child life specialists at the hospital to help us explain to our 3 year old what was going on in very basic terms: his brother was sick and in the hospital and they doctors were trying to make him feel better. We brought him to the sibling play room because we had assumed he would be spending a lot of time in the hospital in the near future.
Since the swelling in the brain from the strokes was becoming the most pressing issue, they had to put an InterCranial Pressure Monitor, which involved drilling a hole in his skull to be able to directly monitor the swelling. The doctors were using a very specific combination of medications to keep the pressure down. There was a monitor that told us what the levels were. The doctors told us not to stare at the monitor but that’s really all we did. If us being in the room raised his pressures, we let him be. If us talking to him made his pressures go down, we would talk to him all day. Since they were having troubles keeping the levels where they needed to be, he went on low stimulation which meant no visitors, only mom and dad.
Since I had only given birth 1 week prior, I was still pumping every 4 hours. Once I realized we were going to be in hospital and what was going on was very serious, I decided to dry my milk up immediately. Thankfully, I had no issues with this. I had a pretty decent stash of milk with no real plans for it. A few different people mentioned that there have been studies that breastmilk can be very healing and that maybe we should see if he could take some through his feeding tube. We asked the doctor and they didn’t hesitate whatsoever. Our situation was pretty unique considering I had just given birth and literally had no one to give the milk to so who better to receive it than my own precious child who was fighting for his life. It made me so proud to see that bag of liquid gold going into his system.
After about 4 days, we found out, through a muscle biopsy, that he had Osteosarcoma and not Ewing’s Sarcoma. I’m sure it was mentioned sooner than I recalled but it was around this time that I started to understand that the tumor in my precious boy’s leg was 9″ long. I will never be able to comprehend how my darling boy walked around with a tumor that size in his leg. My heart aches when I think about the kind of pain he must have been in but then again, he was able to swim and still play at times. His activity level had definitely been lower than before but since it was summer, I was hot and big pregnant, it wasn’t as obvious to me.
We had so many friends visiting us at the hospital, bringing us food, bringing coffee, bringing gifts for our 3 year old. There was a constant flow of visitors at the hospital and we will forever be grateful for that. We were so overwhelmed and emotional and we needed our support system with us.
Since the swelling in his brain, continued to be a problem, the neurosurgery team needed to put a drain in to try to get the fluid out of his brain to alleviate the swelling. This seemed to make a little difference but not enough because it was a constant balancing act to keep the pressures down. My poor son had so many tubes, machines and apparatuses on his perfect little body. He had a machine cooling his body and then a machine warming his body. It was vital to keep his body temperature exactly where it needed to be. He had so many IV’s, EKG monitors, a ventilator, tubes coming out of his head, sooooo many machines that were dispersing his medication. Even at the end, they had little goggles on his to keep his eyes moist since he was no blinking. It was hard to see and he kept the nurses busy the entire time he was there. By the end of their shifts, they were all sweating. We joked that he liked having all that attention on him but we hated that the reason.
Each blog entry I write, I only write as much as my heart can handle for one day. Recalling this information is hard but important to me because this is our story now.
I love you. Thank you for sharing this.
Thank you for sharing your story. Your memories are helping me understand your beautifultragedy and I know it is helping other parents who are living in your reality.