Anna has done really well during this 5 block of treatment. So far, she has had a general anaesthetic 3 of the last 4 Wednesday’s, with a lumbar puncture and methotrexate injected into brain and spinal fluid each time, plus various other procedures and investigations (always worth taking the opportunity of doing anything uncomfortable while she is under anaesthetic!). She then has had cytarabine through her IV tube wed, thur, fri and sat. The outreach nurses come out on the thurs and fri but we go into sick kids hospital for the sat and sun. So it has been fairly intensive both in terms of the amount of medication Anna has as well as the amount of time taken up with it all. She has continued with daily mercaptupurine and anti sickness medication plus her usual mon, tue antibiotics and daily fluoride. Extras have included difflam for mouth ulcers, anti fungal treatments for thrush/toe infection and codeine for pain.
Up until this week, she had come through with little signs of side effects, remarkable when you consider the intensity of this current treatment. But finally this week, it became clear that all was not well. She just wasn’t herself from monday onwards and I was on constant alert for a temperature spike or some other trigger to take her back in to hospital.
A blood test on sunday showed that her haemoglobin had dropped to around 70 ( she normally has a transfusion if she drops below 80). So she had a blood transfusion on tue. She was still weak and very, very sleepy on wed. On thursday, the outreach nurse took bloods to check as I felt there was still a problem. Sure enough, I had a phone call a couple of hours later to say that her platelets were zero (not good at all) and she was completely neutropenic i.e. her neutrophil count was almost zero and so she was completely susceptible to infection. I was told to bring her in to hospital immediately (but very carefully as because of low platelets, she had no clotting ability in case of an accident). She had a platelet transfusion on thursday afternoon.
On friday she was seen at home by the outreach nurse, still obviously not right, and on Saturday we came in for her chemotherapy (cytarabine) and also to have bloods cross matched for a Sunday blood transfusion. Her temperature started creeping up sat morning but they didn’t want to admit her until it hit 38 degrees. Finally, at 11.30 pm on saturday night, she spiked up to 38 and it continued to rise. So we got her out of bed, wrapped her up and Peter took her in at midnight. Her temperature is currently at 39 with a peak of 39.7 at lunchtime today. She is hot, sore, weak and sleepy. She doesn’t want to eat or drink and is lying very still. It reminds me of when she had shingles. She has had swabs taken from all over her body and now we are just waiting for results. We may or may not find out what infection she has. In the meantime, she is on a double dose of additional antibiotics. She is not feeling good at all. We will be in hospital until at least wed.
We are trying to keep normal life going. Nathan and I had a wonderful time earlier in the month
at aunt Patricia’s birthday party in London, and then a day out in Brighton. Anna was sad to miss it but asked if she could go to things when she is better. Peter and I have both had social events planned during last week and, thanks to all those who give us such fantastic support, we both managed to get out and relax. Anna was a good girl waiting until after these nights out before her temperature went up. Peter and I are both trying hard to maintain a normal work pattern, as far as possible. None of this would work without all those friends and family who are so willing to help and support us. We are truly grateful and immensely appreciative.
She had her last dose of cytarabine on this block today. She has daily chemotherapy for another 3 days and then a weeks break from almost all medication. Just antibiotics and daily fluoride tablet. We are all looking forward to an improvement.