An Email to Abi’s Oncologist

A doctor just came in to see us. She wanted to discuss Abi’s nutrition: “Your daughter is way below weight again and even if she is able to keep food down, I doubt she will be able to get what is needed fast enough through eating,” she told me. “I think Abi should have either a nasal-gastro feed (NG), which she has had before, or a percutaneous endoscopic gastrostomy (PEG), a feeding tube that is passed directly into the stomach.” Despite the doctor’s suggestion, and my equal concern about Abi’s low weight, I wasn’t keen on such interventions. So later that night I sent an email to Abi’s Oncologist:

I hope our local hospital have been in touch.

Unfortunately, Abi took a bit of a turn for the worse on Wednesday when she started vomiting every 2 hours. That kept up until yesterday evening (Sunday). She has barely eaten since and consequently, her weight has dropped to around 17.5 kg. Additionally, she wasn’t given chemotherapy today.

Thankfully, Abi has improved a good deal today. She’s still not eaten a much (half a pastry and some jelly), but she has not vomited. She is much brighter.

The hospital wants to take some form of intervention to get calories into Abi. Either through a nasal tube or a gastrostomy. I understand the rationale, but I’m not keen on either intervention. Psychologically, the nasal tube has an enormous impact on Abi. It even affects everyone around her; friends and family, alike. And the gastrostomy is yet another surgical intervention. She’s already had quite a lot of those already. Furthermore, she has to undergo needles twice a week. I don’t think we should underestimate the impact that all of that has on Abi.

So I want to try to see what we can do naturally, with some very carefully monitored high calorie, high protein interventions. Because although her weight is very low, I don’t think it’s dangerously so just yet. In fact, I thought we were going to be down to 16 kg again, so I was relieved when I heard it was 17.5 kg. Perhaps protein shakes and lots of regular high-calorie snacks, such as nuts and avocado, fish, whole dairy and the like? I’m aware that’s dependent on getting Abi to eat again, but it’s my preferred option if at all possible.

I’d appreciate some input from your team on this.

The next day, I got a response from Abi’s Oncologist:

I did have a quick exchange with your local hospital, who are worried by Abi’s weight.

You recall, given her previous history of poor appetite, weight loss, and vomiting, that we did discuss that nutrition would be critical after starting chemotherapy. I am now concerned whether Abi will be able to tolerate regular chemo’ without some form of enteral (NG or PEG tube) supplementation. My experience has been that one needs to set a “line in the sand” with regard weight and if not able to achieve this with non-enteral oral supplementation, make the decision to intervene. I had done research on this when in Canada and we showed for children who needed additional intervention with NG or gastrostomy post insertion they put on weight. Those children also spent less time in the hospital with infections and both the child and family appreciated the decision.

So my recommendation is that if this is not just due to an intercurrent infection, and if Abi is not putting on weight, we should consider intervening. Personally, I would recommend a gastrostomy rather than NG as the kids tolerate that much better, and it is a minor surgical procedure.

Soon after reading that response, I met with the doctors at our local hospital. Despite the Oncologists’ suggestion, I was still keen to give Abi a chance at regaining weight naturally. And after a lengthy meeting, we agreed on a four-day schedule of seeing if we could build up Abi’s calorific intake through her eating. It was to go thus:

Day 1: 352 calories Day 2: 652 calories Day 3: 952 calories Day 4: 1252 calories

Day 1, Tuesday 28th April, started well. Abi managed to drink a whole Fortijuice, which just about met the required daily calories all by itself. She then raced by the requirements by wolfing down a bowl of vegan jelly. Unfortunately, that was probably a bit ambitious because, at 5 p.m., she vomited it all back up. Abi had another tearful episode: “I’m scared, Daddy!” she told me, again. But a nurse came and put up fluids and Abi soon settled down and fell asleep. She slept all night. We both did. In fact, neither of us stirred until we got woken up at 8 a.m. by someone bringing in water. Abi was much brighter for the sleep. Refreshed, and up for the challenge of getting calories into Abi, I created an account for her on myfitnesspal.com, and we spent Day 2 logging her food there. She did well, managing to eat 932 calories. In hindsight, perhaps that was a bit much, but at the time, she seemed to cope admirably.

I went home that night much more confident about my daughter’s health. So the next morning I arrived at the hospital expecting to find Abi fit and well again, munching on breakfast. Unfortunately, I found her vomiting. Not much, but not what I wanted to see. She seemed fine afterwards, though, so I took her down to the school room on the 8th floor, where she happily played with Lego for an hour or so, taking occasional sips of a Fortini shake. A lady from the local museum arrived, bringing with her lots of fun things for the children to play with. She managed to keep Abi occupied for a while with some dragon puppets.

Abi was beginning to tire by the end of the two-hour session in the schoolroom. She looked grey. She barely had the energy to make it to the lift. When we got to her room, she complained of a headache, so I got her to drink some water, and then fetched a nurse, who gave Abi some paracetamol. It didn’t help much. Abi continued to weaken and then vomited later that afternoon. I felt she was becoming poorly again. Sarah agreed, so we decided that we should give up trying to get Abi to eat. I went and spoke about that to a doctor, giving her the news about Abi’s sickness and that I felt Abi needed a PEG after all. Unfortunately, I was told that it could take a week or so to arrange.

So the current plan is to put a nasal tube directly down into Abi’s intestine. Abi took this news badly - she hates the nasal tubes - so we had another episode of her feeling sorry for herself. “I hate my life, Daddy! I don’t want to be here anymore!” she screamed, crying. Fortunately, that was just a fleeting moment of self-pity, which she snapped out of soon afterwards. Probably because she felt a bit better after a nurse gave her some more antiemetic.

Poor child. Abi’s illness is turning into a very bumpy marathon. But not unbearably so; we will get the nasal tube sorted tomorrow and overcome whatever Abi’s disease has in store for her next.