Fundraising , food and friends

T+61

2 months since transplant

Two months ago today we were taking Rufus down to theatre to donate his cells, watching Herbie have them via his Hickman Line after just over a week of chemo. In one respect it seems a million miles away and in another it seems like yesterday.  Time is passing strangely right now. In hospital the time didn’t matter much to me. The meds were all dealt with by the nurses, the food arrived via the housekeepers. There was nobody needing to be collected from school, no trips, birthday parties, clubs etc. Then all of a sudden you are thrown like a screwed up piece of paper in a wastepaper basket, back into your old life and time really matters! School is waiting for your children at 8.50am and again at 3pm. There are meds to prep that need administering at 8am, 1pm, 3pm, 6pm and 11pm. There are meals to prepare, Community Nurses daily at 2pm, shopping to get, lists to write, cleaning to do…

Herbie is oblivious to all of this, choosing to spend many a happy hour playing his new Xbox 360. His meds and meals still arrive, Skatoony is still on at 9pm and he still has no school, parties etc to worry him. The school holidays can’t come soon enough!

It’s easy to think that we are done now we are out of the hospital. Yes we have managed the first hurdle but there are more to jump. Herbie is still the owner of a very immature immune system which means that it might not respond properly to infection.

We are however already beginning to reduce some meds. Two of the three doses of metaclopromide, an anti sickness med given during the chemo and retained, have been cut and we are hoping to cut the last dose shortly.

He used to have his fortnightly subcut immunoglobulin replacement therapy, administered by myself or Dan at home until he went to transplant. Now he has 3 weekly infusions through his Hickman Line. Our dates arrived today for the first four appointments in the children’s Daycare Ward at the JR, our home hospital.

We had post today, from a Y2 pupil at the school in which my friend Heather teaches. He had arrived with the parcel after a talk about Herbie in school.
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Thank you Charlie!

Later there were goodies from cousins Esta, Issy and Martha
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A brilliant hat from Gabriella and Samuel and their mum and dad…
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And a visit from Oscar who came to give Herbie a lolly!
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I also was really emotional to get some lovely gifts and cards from parents of the class I stopped teaching in November last year and from my colleagues xx

Ele, our community nurse , came with some blood results.

HB 113
WCC 14.03
Neutrophils 11.68
Lymphocytes 1.48
Platelets 173

Herb had another brilliant day with drinking and eating. His kidney function is looking ok now.

In many ways so much to celebrate, The Blake School in Witney held a superhero day in their Foundation Stage class to raise money for GOSH after hearing about Herbie . We were so touched by this! Then where my auntie lives they had a fundraiser for GOSH too and most of all, my boy is back. Sadly today was not all happiness, the BMT process gave me the chance to meet new people going through the same as I was. They offered friendship and interjected the stay with fun, smiles and an ear to bend or a shoulder to lean on. Sadly another of these lost their baby girl this morning. They are in my thoughts .

Don’t take your life for granted.

2 thoughts on “Fundraising , food and friends”

  1. Emily your honesty in this blog is so refreshing, it appears that your entire community is surrounding you with love and that is a direct reflection of the love you seem to radiate, tragic to hear that another little one from the ward has died and again thanks to your blog I will squeeze Lily and George a little tighter today. I hope today is another good day filled with laughter and cuddles……bring on the holidays x you are always in my thoughts and prayers xxxxxxx

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