Last week started off wonderfully on the back of a Sunday spent at Betchworth. Getting out of London was a liberation.
We came home laden with Cecily’s sensational dairy-free chocolate cupcakes. Then Marta’s brother Juan and his wife Teresa arrived with more jamon. We are all going to get fat.
Isita went into GOSH on Tuesday for a routine test on her kidneys, but developed a high temperature so they kept her in. Juan and Teresa turned into emergency babysitters for Jamie.
On Wednesday they transferred Isita to Saint Mary’s Paddington. We had a little room with a window that actually opened (fresh air – bliss!) and a view if the canal boats in Paddington Basin and Thomas Heatherwick’s rolling bridge. We watched it curl and uncurl like an insect’s tail, as workmen fiddled with its workings.
Of course we had hoped to get out after two days, but she was diagnosed with an adenovirus, which is nothing special, but her temperature was still up. So we postponed the magician and told all her friends they would have to come another day.
I baked a cake in the evening and Jamie decorated it while having breakfast. The staff on the ward all got together to sing happy birthday. Marta’s godmother Tia Fernanda came, and so did Isita’s godfather Bennet, and Iona with a huge retriever pup teddy, now christened Diggy. We had to ferry suitcases of presents back and forth to the hospital.
But for her bald head, you could hardly imagine our chirpy daughter was sick. Even so, she had another transfusion and stayed two more nights. Marta bore the brunt of it, because on Friday I had a proposal to write for work, then on Saturday I took Jamie to Shropshire where we fired an air rifle at a target stuck on an upturned wheelbarrow. And that, Miss, is why I didn’t write the blog all week.
A fabulous party organised by the staff of Grand Union Ward at St Mary’s, plus cake no.1
Isita and I are just about to leave GOSH where we spent last night. We are moving to St Mary’s Paddington. With any luck we’ll be home by Thursday afternoon, in time for a scaled down celebration of her fifth birthday.
She came back into the hospital yesterday for a hearing test. She already had a mild temperature and it got worse during the day, so they kept her in. It seems we should expect this to happen between each course of chemo.
We have had to postpone her birthday party, but looking on the bright side, this means two parties, and two cakes. Speaking to Marta on the telephone this morning she was very very specific on cake decoration instructions.
Isita had a transfusion today as her blood count had fallen below the required level. She came back from the hospital bright as a button and ate a large amount of Maria’s chicken soup and a dairy-free chocolate brownie made by her cousin Venetia, and a banana. Bravo! Marta, on the other hand, who had been with her from morning until evening, was worn out, poor thing.
It is not just the wear of being in hospital, but the other things which go with it. You would have thought that the hardest thing about chemo would be the side effects from the potent drugs, or being attached to a bundle of medical drips non-stop for 72 hours, or the hair loss. But Isita has reconciled herself to all those things.
What she cannot abide is the horror of having the nurses peel back the adhesive plaster which covers the hole where her hickman line goes into her chest. She also still hates having the daily post-chemo injection of GCS-F into her leg (this boosts the recovery of white blood cells and is a vital part of the treatment).
Marta said that the dressing-change today was accompanied by half an hour of yelling. It is the same with the injection, even though it is done through a canula which remains in her leg all week. Today she was brave and got a sticker, though.
Marta is back in hospital all day tomorrow, as Isita has a kidney test to make sure they are not being badly damaged by the chemo. I am taking Jamie out on an excursion as he needs a treat after what has probably been a fairly testing and confusing month and half.
They let us home a couple of days ago. The doctors were happy about Isita’s reaction to the chemotherapy. She is in great spirits. We are, however, all very tired. Marta and I fall asleep on the sofa straight after supper. That is why I haven’t been posting much for the past few days. All is well!
All is going well so far. Unlike last time, Isita hasn’t lost weight since she came in. She also hasn’t needed any morphine or other painkillers, for the first time in more than a month. We take this as an indication that things are heading the right way and that the chemo is working.
As I have said before we are very moved by the number of people who are praying for Isita. I managed to get to church this morning and Will, the vicar at St Matthew’s Bayswater is praying. So is Carol at St Michael’s Betchworth. My dear friend Bella has nominated Isita as the person her prayer group is praying for. Hristo and other friends in Bulgaria are lighting candles.
We have been given Zam Zam water from Makkah to go along with the Lourdes water. I’m not quite sure what to do with that, but I ‘m trying to persuade her to eat the excellent ajwa dates from Al-Medinah.
My Christian Science upbringing makes me pray for Isita as a perfect expression of God’s creation in which sin, disease and death have no place. Of course, I also find myself praying for everything to be alright, that we get the breaks we need, the tumour responds to treatment, that she is cured. And at more introspective moments, I simply ask for the strength to deal with whatever we have to deal with. It is not exactly consistent, but I doubt God minds about that.
Everyone has been very kind about Isita’s hair falling out. I am glad to report that she has accepted this. Now that most of it has gone she doesn’t seem to mind so much. She likes her hats, and she looks sweet.
As I write this, I am sitting in her darkened bedroom in GOSH waiting for her to go to sleep. Despite the fact that it is nearly 10pm she is buzzing, and hungry. Earlier, she had seconds of hot chocolate fortified with dietary supplements plus a couple of dark chocolate truffles. Now she is asking for bread and honey, olives and dried mango.
I’m desperate for her to drop off, but at the same time if she wants to eat… Also, I am quite proud that Marta and I have got Isita back here in for the second round of chemotherapy in such good shape.
In the past week, she has put on weight and avoided getting the flu which Jamie went down with last Friday. We carried out a manic hygiene regime, a bit of quarantine and did tons of laundry. Even with all this, it felt happily normal if a bit exhausting. I even managed to go back to work.
The nurses are popping in quite often to set up all the drips and Isita prattles away with them about whatever is in her head. She spent the last five minutes telling the nurse who came to check the chemo how “my brain tells my mouth to move and I have to move it”. And so it would seem.
Now, as she pops another kalamata olive in her mouth, she has been asking me what ‘ruptured ‘ means. Apparently someone in the Barbie episode she watched earlier said ‘I think I have ruptured my spleen’. Who knew it could be so educational?
Unfortunately no one else can come in to swap word definitions with Isita for the time being, as the ward is under a kind of infection control lock-down to protect patients against the norovirus that is going around – probably just what we managed to dodge at home.
Isita’s hair has started to fall out. She woke up a couple of days ago with tufts coming adrift and now looks like an angelic midget whose comb-over has got in a muddle. It happens so quickly.
It is not a flattering moment and up to a point she has been remarkably unfazed by it. That point was when she saw herself in the mirror this evening while brushing her teeth. Before that she had felt her hair thinning, and seen the tangle of golden floss pile up in the tin box (for collection by the hair fairy), but not not fully linked these things with a change in her appearance. It seems that all the amazing preparation by the play specialists and nurses at GOSH couldn’t prepare her for that.
She has known for weeks that she will become totally bald, and accepted it trustingly as she has accepted so much else. She has a bald barbie and a bald stuffed lion. So, perhaps when she has lost all her hair it will be easier. But no matter how beautiful she is in our eyes, and how much we told her, this evening she could not see past her wispy scalp.
The hats Marta has bought made her feel better and less self-conscious. She went to bed in a pink woolly number. Tomorrow, we will go through my hankie drawer to find her some silk spotty bandanas.
Isita is back home. The doctors eventually found the missing blood samples which the lab had mislaid yesterday. They came back negative. In fact, a urinary tract infection was the cause of the original high temperature. They found it in her wee. They were very pleased to have identified the cause, as often it remains a mystery. They also said we should get used to this, as something similar is likely to happen between each bout of chemotherapy. For now, we are thrilled to be back in our own beds.