The hospital blues

yep, i have got it. the blues. the hospital blues. i’ve had it this week and now i am fed up with it. as expected Vega’s blood count did go down and this week she had two transfusions.

Vega’s blood counts  30/04/12

Vega’s counts first, average in brackets behind.

HB (red blood cells)- 7.9  (9.5-15)

WBC (white blood cells)- 0.09  (4.5-11)

Neutrophils (infection fighting part of the white blood cells)- 0.02   (>1 is not neutropenic, normal range starts at 3)

Platelets 12  (150-450)

yes, you read that right, platelets were at 12. that is so very very low, that if she scratches an itch on her nose she looks like a price boxer five minutes later. bruises just crop up everywhere from the slightest bumps (sometimes even with no reason at all). i find that quite scary because she could obviously be bleeding anywhere on the inside her body too. without me knowing. anyway, so we had a date with the bloodbank for a platelet transfusion which really isn’t that bad because it only runs over 30min. but do you remember the thing about hospital time? yes, right again. we spent 4 hours on Toni and Guy, our ward at kings college hospital on monday night. we left there at 11pm, off home to bed and then up again a few ours later to the marsden for Vega’s chemo on tuesday. blood was taken again, as it always is after a transfusion to check levels have improved.

Vega’s blood counts  01/05/12

Vega’s counts first, average in brackets behind.

HB (red blood cells)- 7.2  (9.5-15)

WBC (white blood cells)- 0.1  (4.5-11)

Neutrophils (infection fighting part of the white blood cells)- 0.25   (>1 is not neutropenic, normal range starts at 3)

Platelets 109  (150-450)

there you go. transfusion filled up all those depleted platelets, but now we were heading rapidly in the under 7s for her HB and that would very likely warrant a red blood cell transfusion later during the week (it did). higher platelets meant though that her chemo scheduled for that day could go ahead. she was due to receive Vincristine, this is the chemotherapy drug that is most likely to blame for Vega’s problems with walking. vincristine causes the calf muscles to waste away and also strips the children of some of the reflexes they require to walk (ie, pulling up the foot to lift it off the floor). it also causes neuropathy which apparently feels a bit like bad, constant pins and needles in your extremities. different children get this to different degrees and although Vega has not developed ‘drop foot’ she does have itchy tingly feet and lower legs, especially at night. she gets episodes at night when she suddenly tosses and cries and screams and looks as if she is trying to rip her toes off. i always think that it must be very painful indeed because Vega doesn’t complain about many things but this leaves her a total mess. vincristine is given fairly frequently, and she has it given as a push in her port throughout the duration off her treatment.

the other chemo Vega was due on tuesday was PEG asparaginase. Now i am always really confused about this. i have tried to read up on it but still i dont really understand how it works. asparagine is a substance that normal cells need to live but the PEG asparaginase destroys that substance. cancer cells cannot survive without asparagine so when the PEG destroys the asparagine the cancer cells die. the PEG is a form of this drug that will remain in the patients system longer. but it is also like a little time bomb. the effects are accumalative and with each application the chances of a severe allergic reaction increase. it is given as an injection into the thigh and needless to say this is definitely Vega’s least favourite drug. out of all the things she has to endure, out of all the poisons that she is receiving, this needle prick brings on the most anxiety.  we always have to stay on after receiving the injection to look out for symptoms of an allergic reaction, after the first two PEGs during her induction we had to stay 30min, now we had to stay 1hr. as the treatment goes on and the chances of an allergic reaction rise we will have to stay longer and longer each time. the nurses have an epi pen ready and know what to do but a reaction would also mean  Vega would not be able to get PEG asparaginase again and it would drastically change her treatment. instead of PEG-asparaginase, the children who become allergic may be given a different form called Erwinia-asparaginase, which require more frequent applications, like every other day instead of once a month. not nice. not nice at all.

so platelets were up, you would think we would be ready to go. but nothing is ever easy in the drugged up world of chemo. we arrive and all Vega’s obs (observations- temperature, blood pressure, pulse, weight and oxygen saturation) are fine. but then there is another thing about hospitals. children’s hospital in particular. they are actually torture chambers. disguised by brightly painted walls, pictures of teddies  and a never ending supply of crisps, biscuits and cbeebies. all the children who are there suffer. some more, some less, some more quietly and some very loudly. well on tuesday we were surrounded by the noisy type of sufferers. next to us and opposite us, the children just kept screaming. about all the needles, the removal of a gastric tube, and well hey, maybe just for the heck of it too. Vega sits in her over sized armchair and watches tv as if she can’t hear it. but after a while she starts to put her hands over her ears. at this point i would like to point out that i am feeling like a wreck. i had a headache that morning anyway, but the whole screaming, crying, sometimes even begging is just getting to me. the whole suffering is burying me under a huge cloak of anxiety. and just before we are ready to go with Vega’s chemo, which in itself induces anxiety in both her and me, her pulse has gone up. its gone up and now they can’t give her the chemo because, as she is so neutropenic, a high pulse could be a sign of an onset of infection. so we sit there hours, checking Vega’s temperature, which stays down, and checking her pulse, which stays up, while the children around us still scream and cry and sob. i am trying to argue a case for her and that the high heart rate clearly is related to all the suffering we have to listen too and also the anxiety about the imminent injection, but it has no use. the protocol states… bla bla bla. after one of the loudest and most hysterical children finally leaves, Vega’s pulse drops and we are good to go at last. only 5hrs after we arrived for our appointment.

i am not sure i have the energy to tell you about our blood transfusion of red blood cells last night, and i am not sure if you have the energy to read it. it was very fustrating once again and something that should have taken us 5hrs tops, kept us in kings from 6pm last night till 3am this morning. i discharged ourselves in the middle of the night because i could not bare to listen to the vomiting and crying that was going on around us any longer. the bloods that caused the need for transfusion were taken yesterday morning-

Vega’s blood counts  03/05/12

Vega’s counts first, average in brackets behind.

HB (red blood cells)- 6.8  (9.5-15)

WBC (white blood cells)- 0.28  (4.5-11)

Neutrophils (infection fighting part of the white blood cells)- 0.15   (>1 is not neutropenic, normal range starts at 3)

Platelets 57  (150-450)

once the HB falls under 7 she is transfused. i tried to fight it yesterday, trying to argue that we should wait. but as she is so neutropenic, she could come down with an infection very quickly and having an infection, being neutropenic and then being anemic on top of that would make for a bad outcome. so we had to. i had to bite the bullet. our next blood test is tomorrow morning but i do hope we are coming to an end of feeling the effects of the cytarabine and her counts should start to pick up slowly by themselves.

these long and frequent days in hospital make me incredibly tired. i get so fustrated, the loss of control is draining. in those moments at the hospital i am finding it hard to keep it together- everything just overwhelms me and i feel sick and sad about everything. all this crap that Vega has to go through, that my other children are not with me, who will look after them the next time we have to rush off (which could be anytime), about not having dinner with Ray again. and i suffer with all the other children who cry and sob and are just scared so scared, mainly of needles.

but now we are home and i had a few hours to recover. Vega has another push of vincristine on tuesday and after that- wait for it!- we have nothing until the 22/05! well we do have blood tests but that doesn’t count really. no chemo for two weeks. amazing. Vega gets time to recover a bit before we hit the next installment in our nasty chart. her counts have to go up before she can start the next block so we are likely to resurface from the neutropenia  swamp for a few precious days. after 8 long weeks of neutropenia we decided to give Vega a special treat. due to all your generous donating and fundraising we have splashed out on four tickets to see shrek the musical in london next weekend, a treat for Vega, Lyra, Mama and Papa (Alys has another special treat by joining the Hands girls in their wendy house!). we have never done anything like it, musicals are totally unaffordable, but we thought we all deserve it, especially Vega and Lyra. they are so excited! i am sure a dedicated blog post with pictures will follow. so once again, thank you for your donations and i hope you approve of our way of spending it. such a trivial, commercial thing to do but meaning the world to someone who wasn’t even allowed to get on a bus for the last 8 weeks.

i have been thinking a lot about hope and how to capture it, hold it and not letting go of it. where it comes from and why it is so hard to find it sometimes. i wanted to write about it but now i am so tired, the only thing i can do is hope that i can do it tomorrow or some other time soon.

until then my friends.

Ps- here is a picture of Vega after she was at a birthday party- i like how you can see her little fluffy hair growing back, soft like a baby rabbit, but very fine.