Enjoying a brief time of no tube.
I’ve decided if my input is ever sought for designing a hospital, I am going to suggest a soundproof room that is exclusively available to people who need to scream – maybe with a punching bag or something else, too. I desperately needed this on Friday - a day Ollie refers to as “the worse day I’ve ever had” (of course, his memory is spotty, and while it was difficult, it barely cracks my top five). I spent so much of the day fighting tears of sadness and anguish, and I think if I could have just had a moment solely to myself to scream for as long as I needed, I would have been able to cope a little better. Instead I had to do my best to not cry in front of Ollie – he gets so worried when he sees me crying.
Things were set into motion on Thursday night when Ollie vomited with enough force to throw up his feeding tube. This is scary, and after some panic, he and Anthony managed to pull it the rest of the way out of his nose. One benefit is John Oliver was so astonished as his own bravery and ability to handle the situation that he repeatedly told us that he can handle anything after getting through that. So when we arrived at radiation the next morning, I told the nurse and anesthesiologist we needed a new tube, and they went about making the arrangements. I was thrilled we were getting it done early in the day, and they were going to do it while he was knocked out.
Unfortunately, what I did not know was that the wire used to insert the tube had to remain in place until an x-ray could be completed to ensure the tube was in its proper location. When Ollie was wheeled out of the radiation room, and woke up from the sedation, he started to cry. Apparently having a stiff wire up through your nose and down your throat is very uncomfortable, and he worked himself up, demanding that we remove it immediately and that he could not take it anymore. Even more unfortunately, since this was done at the Winship Cancer center – in a different building and separate from the pediatric oncology clinic – getting an x-ray was not an easy or quick process. We first went to clinic – it had just opened, and the solid tumor team was not there, but a nurse helped us by putting in orders for an x-ray. we then had to go back down to the front registration of CHOA, sign in, wait our turn to be called into a little room and give all our information – insurance, address, etc. – and then were sent to radiology. At this point, Ollie has spent over an hour with this wire sticking out of his nose, screaming and crying, and my nerves were frayed.
New tube (this one lasted less than three days), napping during chemo
After some more waiting, we are finally taken back for an x-ray. They asked for him to stand – he can’t, so they arranged for him to lay down, and when we picked him up to place him on the table, the tube caught on his wheelchair, and was yanked out several inches. I’ve never heard him scream so loud. I panicked, asking for help to either push it back in or pull it out. The x-ray techs told me they are not allowed to mess with it, and insisted we do the x-rays so the doctor could see where the tube was now located. They did one of his abdomen, said we were done, I put him back in his wheelchair, and then they said they needed one of his chest, so back on the table he went. I asked for a doctor, and they said we would have to go back to the clinic, so I hauled butt, brushing off any offer to help – I knew I would be faster alone.
Back in clinic, he was still screaming, we did some more waiting, and were finally placed in an infusion room. At this point Ollie was clutching the tube for dear life right at his nostril, terrified to move. Thirty minutes and several visits from a nurse later, I was told we would go back down to radiology in an hour to have the tube fixed. I was incredulous – there was no way either Ollie or I were going to get through another hour. I asked again about just pulling the tube, and the nurse said sure and put on some gloves. He said it was in only about 10 cm anyway. This was the first time anyone gave me information from the x-rays dispite multiple requests. Ollie was scared and said he would rather wait an hour. The nurse then offered to let him pull it out – which was strange since the x-ray techs insisted only a doctor was allowed to complete the job started in their room. Ollie bravely pulled, and once it was out, he started to cry, “These are happy tears! I’m so glad that is over!” A weight came off my chest, and I took what felt like my first breath in several hours.
A highlight of the weekend – playdate with Ollie’s best buddy, Micah
We waited the hour, and returned to radiology. The lab techs (different ones, thank god) spoke kindly to Ollie, and asked me to place him on the table. I asked if he could have something to help him stay calm – versed or Ativan. The answer to this took about 30 more minutes because no one knew if it was ok to give him something after his morning sedation. But I am so, so grateful to the doctor and lab techs who patiently and persistently made calls to get an answer for us. Thankfully it was yes, and we were moved again to a little room for a nurse to administer the versed. This took about 30 more minutes – vitals were taken, information recorded in the computer, etc. Finally we were back in the radiology room, Ollie was on the table with a little medicinal courage, and the tube was correctly inserted. He was awake, and hated it, but it was nothing like the fit he had last time.
By then it was 2:30, and we still had chemo waiting for us up in clinic (so much for getting the tube taken care of early in the day). Everything went smoothly with the chemo, and Ollie even napped a little, and we left the hospital around 5 pm. It was wonderful to put radiation behind us, even if graduation day was marred by the tube fiasco, and chemo is finished for a couple more weeks. Two whole weeks with no treatment. I am both delighted and terrified. I desperately want his body to have an opportunity to recover from all it has been subjected to, but I get really anxious about cancer growth when nothing is being actively done to stop it. He lamented about his immobility today, and I am eager to do what we can to help him walk. It’s been so long that we now have to fight the pain, and build back his balance and muscle strength.
Last night was one of my most difficult moments. As he and I lay in bed, he asked me when the cancer would be completely gone and he could have his noodles taken out. I told him I didn’t know, and of course he was disappointed with this answer. This question broke me because it forced me to confront the truth – the cancer many never go away, and it demonstrated how difficult this uncertainly must be for such a little one. Almost one-eighth of his life has been lived in the shadow of cancer, and it must feel like forever to him, and he just wants to know when life will return to normal – when will he be able to go to school, play at the park, not have tubes hanging out of him, not spend more time with adults than other kids, not spend days and days sitting in waiting rooms, wondering what torture will next be inflicted. He’s asked about going swimming, and was crushed to not be on a Disney trip with his cousins this week. I hate that these childhood pleasures have been exchanged with misery, and I hate that I do not know when or if it will ever stop.
And to put a cap on this weekend, as we were driving back to Alabama today, he vomited about two miles from our house, once again throwing up the tube. I’m very lucky to have not driven in a ditch – fortunately when I slammed on my breaks, veering to the right, we were in a driveway. I ran around the car in the rain, and once again helped him pull the tube completely out of his nose. Having no tube presents a few challenges – it means no feeds, and lost opportunity to put on weight, and it means he must take all his meds by mouth. He has been vomiting a lot lately, so this is risky business. Despite all of this, we are so happy to both be back at our home in Alabama. It has been almost a month since Ollie was last home, and it makes the house feel so much warmer when he is here.