There was a lag after Romy’s stem cells were reinfused while we waited for them to engraft (travel through her body to the bone marrow and begin making new blood cells). This normally takes 10 to 12 days. During this time the effects of the chemotherapy peaked. The main effects were vomiting, nausea, pain, vomiting blood and mucositis. Mucositis is particularly unpleasant as it is caused by the chemotherapy attacking the cells down the whole gastro-intestinal tract from the mouth to the anus, leaving the tissue open to ulceration and infection. There is nothing that can be done except for supportive care and pain relief until the blood count comes up and the body can heal itself. In most cases people end up on TPN (nutrition intravenously as the gut will not tolerate anything) however TPN could have been a contributing factor to her getting VOD previously so we wanted to try and avoid it if we possibly could. Every Dr was sceptical, one struggled to recall any patients who had avoided TPN after high dose chemo in their whole career and all said that it was not impossible but very, very unlikely. But Romy manged to defy the odds and we kept her gut working with the smallest trickle of feed and expressed breastmilk. Of course she didnt eat or drink anything orally, and continued to refuse even sips of water for many weeks to come, but thankfully the nasogastric tube enabled us to bypass her mouth and throat where the mucositis seemed to hit hardest. During this time she also had many platelet and blood transfusions and morphine for pain. She was very susceptible to infection and ended up on many antibiotics which was quite normal in this situation. Of course she remained under protective isolation with no unnecessary visitors to her room and special rules, for example wearing gloves and aprons upon entering her room. This was the longest Zephyr and Romy would go without seeing each other in their lives. Once the nausea stepped up she moved to a constant infusion of anti-sickness medication 24 hours a day but didnt need a morphine infusion, just oral. We are continuing to watch her recovery carefully as the risk period remains for up to 100 days and her immune system remains fragile for 6 months to a year. The high dose chemo has wiped every single vaccination she has had since birth and she remains at risk from even simple things like chickenpox and common viruses, bacterial or fungal infections that would be simple inconveniences in a normal healthy body.
Helen & Tom
