Sarah and I Fall Out
The news that Abi was no longer tumour free had, of course, been quite a shock. I started searching for something that I could do and began looking again at Abi’s diet, by talking to other tumour parents about what they fed their children. Prominent was the ketogenic diet, which is based on low carbohydrates, high fat, and high protein. It is already an established treatment for epilepsy in children. The idea behind the diet is to move the body into a state of ketosis, starving the body of glucose so that, during fat metabolism, it generates molecules called ketones. These ketones can be used instead of glucose for most of the energy needed in the brain. It’s this property that has made the diet interesting to the brain tumour community because it is thought that tumours thrive on sugars such as glucose. Sarah sent me an email telling me that she thought the diet too extreme. She had begun introducing Abi to an alkaline diet based on lots of fruit juices. The theory behind that is that certain foods can affect the acidity and pH of the body. Cancer is thought to rely on an acidic environment, so be reducing that acidity, the thinking is that you are helping the body overcome the disease. However, I could not find many academic studies of the diet. Indeed, most health professionals are sceptical because of the role kidneys play in regulating acidity levels, which means that it is probable that all the alkaline diet actually does is affect the acidity of urine. Furthermore, the diet is more often than not used in weight loss regimes, because it is very low calorie. So I was concerned that it might be inappropriate anyway, due to Abi already being very slight. Meanwhile, Sarah had another nutritional test done for Abi. The results from that said that she should avoid all dairy products, eggs, and potatoes (however, a nutritionist at our local hospital has since poured scorn on the test, which she feels was likely to be inaccurate, due to its reliance on IgG antibodies. Apparently, tests done on IgE antibodies are more accurate). The result of falling Sarah and my falling out was that I did not know what to feed Abi and so I was in a state of paralysis around mealtimes.
Then, on the 22nd August, I received an email telling me that Abi’s surgical team wanted her to go for a check up. I phoned the hospital to find out the reason. A nurse there said it was because Abi had started vomiting while on holiday with Sarah in Cornwall. I was annoyed that Sarah had neglected to tell me that. But I put my grievance to one side and arranged for Abi to go to the hospital on the same day we were going to see the musical Matilda. Abi seemed healthy and happy when I eventually took her to the hospital, and indeed, the nurse we saw also seemed satisfied that she was well. Besides, a scan was booked for October, and the nurse felt this was going to be soon enough. Nevertheless, she wanted Abi to see her Orthoptist so they could check for swelling behind her eyes. She promised to book an appointment at our local eye hospital and then sent us on our way to go to see Matilda (which was fabulous).
When the appointment at the eye hospital failed to materialise, I tried chasing it up by calling them. Forty-five minutes of recorded messages later, I gave up. I then tried again, but with the same result. Exasperated, to find out what was going on, I visited the eye hospital in person. It was a good job I did since they were waiting for a fax from the hospital, and the hospital was expecting a phone call from the Orthoptist. I resolved the impasse by getting both parties together on my mobile phone, and Abi was given an appointment for later that week. Thankfully the lack of swelling behind Abi’s retinas confirmed that there was nothing obviously amiss with Abi’s tumour, or her shunt. However, unfortunately, Abi continued to vomit occasionally.
One of the ways I had resolved my mealtime paralysis was to introduce fish. On the evening of Monday 8th September, we all sat down to have Mackerel for tea. Abi ate all of hers. That was the most I had seen her eat in a long time, which pleased me immensely. Unfortunately, my happiness was short-lived, because after going to bed, she threw it all up and made quite a mess. While I was cleaning up, she threw up another two times, but this time into the bucket I had fetched for her. However, by the time I got her new bedding sorted, she appeared okay, and she managed to get a good night’s sleep.
I wasn’t going to take her to school, but she looked so well in the morning, I decided to take her after all. Unfortunately, at about 10 a.m., I got a phone call telling me that Abi had been sick again. So I went to fetch her and took her straight home. She continued to be sick throughout the day, and at about 4 p.m., I phoned our local hospital, seeking advice. They told me to keep Abi comfortable and they would reassess in the morning. But by 6, Abi couldn’t stop vomiting. She was feeling extremely sorry for herself: “I hate my life, Daddy!” she told me, crying. “Oh Abi, you have a lovely life. This is just a small hiccup. You’ll be fine, darling,” I said, trying to reassure her. “But Daddy, I want to go to the hospital!” I think I will always remember my heart sinking at her telling me that. Enough was enough; I phoned the local hospital and warned them that we were on our way. I then rushed across town to admit my daughter to A&E. Once we arrived, and Abi had been made comfortable, I let Sarah know we were in the hospital. She came soon afterwards. Abi was quickly taken down for a CT scan and x-ray. Thankfully the results came back clear. But she was quite poorly by then, so she was admitted onto a ward and to keep her hydrated, she was put on fluids through a cannula.
Abi maintained a pattern of having good days followed by days of vomiting. She had an MRI and various other x-rays, but nothing amiss was found. Blood tests showed no signs of a virus, and the antibiotics clearly had no effect, so there was no apparent bacterial infection. Sarah stayed by Abi’s bedside while I kept Kara’s life as normal as possible at home. I took her to gym class on Thursday, arranged a play date with her best friend on Saturday, and took her with me to a football tournament I was playing in on Sunday. We won it! And I got awarded with a large trophy as the player of the tournament, which Kara loved seeing me win.
By Monday the 15th, Abi looked dreadfully thin and dangerously ill. That lunchtime, a nutritionist, and a senior gastric consultant came into see us all. The consultant examined my daughter and was clearly very concerned by what he saw: “Your little girl is malnourished. My advice is to give her a high-calorie nutritional supplement via a tube inserted into her nostril and down into her stomach.” To my disbelief, Sarah objected: “Those feeds contain fluoride and additives. Is it possible to use a natural high-calorie supplement that I have seen at a local health food shop?” she asked. “Absolutely not,” replied the consultant. “I will not allow supplements to go down a nasal tube that I cannot absolutely guarantee.” Sarah persisted: “Can I at least try and give Abi some of the natural supplements orally?” she asked. “I can’t force you to give up on that idea, but I don’t think it’s wise,” he replied. “Your daughter needs high-calorie food urgently.” “Please!” Sarah insisted. The consultant looked at her and saw that she wouldn’t budge. With that, he shook his head: “I have given you my opinion. Your daughter needs feeding. But I cannot force you to heed what I say,” he told her as he left, obviously exasperated. I felt Sarah’s fervour for all things natural had gone too far this time. But there was nothing the doctors or I could say to change her mind. They were left with little choice but to allow her to let her try to feed Abi the health store supplements. Unfortunately, however, Abi vomited them back up almost immediately. Sarah’s plan was abandoned for the nasal tube, and the high calorie feeds that the consultant had recommended. I was relieved, but Sarah left the ward distraught.
Unfortunately, the nasal tubes turned out to be quite a drama. Abi immediately vomited up the first tube inserted into her stomach, then she had to go down to x-ray to ensure the correct positioning of the second. That stayed in for a day and a half, during which time she was given 1500ml of high-calorie supplements. She looked much healthier for them too. But then she threw up 600ml of the feed and the tube with it.
By that time, I was sleeping by Abi. But that night I agreed to let Sarah stay instead, partly because I knew she was worried and wanted to stay, but also because I was concerned about Kara. When she came to visit on Wednesday evening, she was in a foul mood, which was very unusual. It was evident that Kara was shattered. Sarah had been arranging sleepovers for her so she could stay late at the hospital. “That’s not fair on Kara,” I said. “She needs to sleep at home on school nights.” “Kara’s fine,” I was told. However, I could see that wasn’t true, so taking her home with me was the only way I could ensure she got a good night’s sleep.
Later that evening, Abi had a tube inserted much deeper, in the hope that it would enter her small intestine and bypass her fragile stomach. Unfortunately, she threw that up too. On Friday, they decided to abandon the nasal tube altogether and go for the PICC instead.
By this time, I was becoming concerned by some of Sarah’s behaviour towards our children. She loves them dearly that I do not doubt. But I believe she is far too quick to project some of her fears onto our daughters. For example, my youngest daughter started to demand that she only use wet wipes to wipe her vagina after a pee. “Why, Abi?” I asked. “Because mummy has told me that I will get a bacterial infection otherwise!” she said. “Abi, ordinary tissue paper is fine,” I replied. “No, it’s not, Daddy!” she told me, getting upset. Then, shortly after Abi first vomited, I was sat reassuring her that it would all be okay when Kara managed to get my attention. She whispered urgently into my ear: “Daddy, it’s not alright! It’s her shunt!” I took her to one side. “What do you know about the vomiting?” I asked. “Well, mummy told me that the headaches were due to the shunt not working properly. She also told me that I should excuse Abi behaving a bit erratically because the ball in her head was back,” she answered. I was flabbergasted. “Kara, there was only a very little bit of tumour back. It’s nothing too much to worry about. Furthermore, the vomiting was perhaps some funny bug, and not necessarily anything to do with Abi’s shunt.” Kara seemed relieved. I didn’t want to contradict their mum, but I was amazed that Sarah would tell Kara such things. Especially when she had sent me an email imploring me not to frighten Abi with the news of the recurrent tumour. Why had she decided to scare Kara instead?
Meanwhile, I have my suspicions that, however well intentioned, the diets Sarah and I had introduced may have caused Abi’s ill health. It’s quite a thing to admit to yourself that you may have starved your daughter. I hope that’s not true, of course, but with each passing day that the doctors are unable to find the cause of the vomiting, that concern becomes greater. Sarah and I are going to have to have some difficult discussions about Abi’s eating, made all the more problematic because of our terrible relationship. How do I suggest to her, without having a massive fall out, that we might be to blame for our daughter’s ill health? That we desperately need to get proper advice before embarking on weird and wonderful diets? We need to get Abi eating healthily, based on real science, not the pseudo-science Sarah and I had been guilty of trialling on our poorly daughter. That only way I could see of managing to have that discussion was to enlist the help of the nutritional team here at the hospital.