Reflecting on the journey so far

T+154
We have been free of Amikacin and on the reduced steroid dose for over a week now. It’s been a reflective time in our household. On one hand the sadness of knowing that Herbie and myself are approaching the anniversary of the date when school life stopped in its tracks. Thus leaving a very sad 4 year old unable to continue with his Reception class friends. A boy who embraced his new roles as a primary school pupil, a member of Peach class etc was suddenly left on the other side of the glass looking in as his peers continued on to each milestone without him. He’s missed numerous birthday parties, his first nativity, his first school disco, his first school fair, pantomime trip, sports day and too many other things to list. Memories were made for his friends, photographs taken, experiences gained but Herbie has had a very different year.
It’s been the same for me. Those who have known me a long time know how much I love being a teacher. The last few years have been tough as I wrangle with guilt of being unable to commit to a whole year with my class to be at home with my ill child. I too have missed many of my favourite things about school, about being a teacher, about being part of a team.

This post is not actually about sadness though, it’s about reflection. Despite what we have missed I think all of us are able to look at this from a different perspective now…how close we are getting to having parts of our life back. We are all feeling like the bulk of this behind us.
This time last year we were about to go on a small UK Holiday to make up for the awful summer we had had with Lily being so ill and on daily iv’s. The holiday was an amazingly happy time for us all. We came home refreshed, happy and almost carefree!
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We have always liked the simple pleasures in life, no great need for exotic travels, filling days with one adventure after another. For us being together is most important. So that is what we are looking forward to this half term. Yes we have two hospital appointments in that week, yes it’s unfortunate but we are also going to be at home together which we treasure.

Herbie is slowly making progress. I am happy that stopping the Amikacin didn’t cause a reaction and the reduction in Prednisolone is being tolerated too. We were advised that we could stop potassium supplements last week. I chose to wean rather than stop completely. Bloods are taken tomorrow and we shall see what they show. Last week the blood results were good. Things are going as well as can be expected and Herbie is happy.

School is still an issue for him. He so desperately wants to return. He asks on a daily basis how many more days until he can go back! He is working hard with his outreach teachers and this week it was arranged that he could go to school at the local Hub. This means actually going somewhere for school. He still isn’t mixing with others but it’s a change of scenery and opens opportunities for things like cooking and larger art projects.

Announcing his arrival
Announcing his arrival

Our story was in the local paper again. I think that is the last time we will do that. The girls have mixed feelings about it especially. The boys love it though! It was a nice article and made the front page.
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I was shocked by the level of interest after the article with numerous calls from local radio stations and women’s magazines. We are not following any of these up though.

This week we had our annual flu vaccination. I am not anti vaccination at all and really don’t want flu as I know it can be dreadful as well as life threatening for certain groups ( namely Herbie and Lily!). This time I was concerned about whether Herbie should have it. I know it’s not a live vaccine but I asked Waseem and various other medical professionals before finally believing it was ok. I didn’t let the children know until we arrived at the surgery what we were doing. Thankfully there were only a few complaints.

A quick thank you to Emma for a lovely parcel for Herb and the gang last week.
She is so kind, a fellow PID sufferer, who herself has been quite unwell recently but always thinking of others. Hope you start feeling better soon Emma x
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So as we head into the last few months of 2014 it will be important to protect all of my family but particularly Herbie. Simple pleasures such as a large family gathering for Guy Fawkes require a little preparation to ensure that we can go. Herbie is so excited about the prospect of a family gathering with his cousins, it’s been quite a few months since the last one in March. Fingers crossed that things continue to go well and all of the Taylor Clan stay healthy.

We can now turn our minds to Christmas and the children’s birthdays and hope to replace some of the sadness and disappointments of last year with smiles, happiness and joy. The children hope Elf McJingle will return and Herbie is also thinking of other things returning… He said,” I will even have lots of hair by then! ”
I think he may well do!
🙂

Christmas 2013
Christmas 2013

Questions, questions, questions… And the answers?

T+143 : First immunology appointment post transplant

So as those who have been reading know today was the day we officially transferred back to immunology and Dr Waseem. It was also the day that we hoped for some good news about meds, weaning and progress. I know , I know …you are probably reading and thinking why did she build her hopes up, why did she put so much pressure on the appointment. Well I can’t answer your questions but I can tell you the answers that I got for mine…

We arrived in a rainy London in time and headed straight to the hospital in good spirits.
The waiting room in Safari Outpatients was almost empty! This was a complete contrast to to the heaving masses there 4 weeks ago! The bad news was that I overheard the people behind the desk saying that they couldn’t find any of the doctors that were supposed to be there!
We met Hiral from the BBC crew and had a catch up and then the smiley baby Jack with his lovely mum and dad came in too.

Herbie went into be weighed with Joyce, the HCA, and he was very amusing. Joyce is always funny with him and today was no exception. His weight continues to rise (driven by steroids) and he’s also grown in height! His blood pressure was coming in stupidly high with the electric pump but after I reminded her that he needed a manual BP machine for a more accurate result and so she got one and his BP came down to a totally normal rate!

Waseem called us in and finally I got to ask my questions!
He was pleased with how he looked and his previous bloods. He explained that his counts are looking really good and that he is still 100% engrafted. I asked if we could still plan for him to return to school in January and he said definitely, maybe even sooner! This was music to my ears.
We discussed meds. I raised my concerns about the long term use of Amikacin and he agreed and decided we would stop it as of today! Just like that, one iv down! Whoop whoop! I pushed my luck…how about the other one? Would we still need iv’s by Christmas Day ?
Waseem explained that they needed another CT scan to check the lungs and a scan of the liver/spleen to check for fungal lesions. He would arrange for December and if all good he would stop Micafungin before Christmas.
Prednisolone is to be gradually weaned again, MMF weaned from November. Ciclosporin is a little way off yet but that’s fine.
Waseem also explained that they are still investigating our genetics and trying to work out what happened with Lily. Dan had to give more blood for their studies. Whilst we waited there for Dan , Helen, Herbie’s teacher in GOSH, popped by. He was thrilled to see her.
Then we left and headed back to Robin Ward for the first time since we left in July.

It was odd going back there after all of these weeks. We spent almost ten weeks there, calling it home. In the grand scheme of transplant we were one of the lucky ones, some dear friends are still there getting over daily hurdles, some came home without their babies.
Seeing the familiar faces was lovely, David let us in, Maria met us at the door of Robin Ward and then Amy, Lucinda, Maxine, Rose & Rosie appeared. All were full of hugs and smiles and were happy to see us. Maxine got her phone and called Rehka as it was her day off and Herbie chatted merrily to her. It was lovely to see his smiling face light up at seeing them all and hearing Rehka’s voice x

Herb on the phone to Rehka and with Amy.
Herb on the phone to Rehka and with Amy.

So we left London and headed home, knowing we were starting the next plan and returning in four weeks to discover our next move xxx
Remember , remember the 5th of November, gun powder, appointments and what?

Floating on a millpond

T+142

We are approaching 5 months post transplant. Some days this fact blows me away, are we really almost half a year on from transplant? Other days those GOS isolation days seem a million miles away.

These last few weeks have ticked by with very little to mention (hence no posts.) This is undoubtedly a good thing given the weeks that followed our initial stay at GOS but it has also given me time to ask questions, think about our situation and ponder the near future.

As we approach the 5 month post transplant mark on October 16th it is with bewilderment that I realise that this whole episode began on November 15th 2013, almost a year ago. I see Children in Need adverts, merchandise etc and remember that it was the last day that Herbie attended school properly and that I went to work properly.
I don’t want another Christmas Day planned around community nurse visits and iv’s. I truly believed that Christmas 2014, post transplant, would be a very different, happy and carefree experience to the 2013 one that was all about iv’s, fevers and at times despair. It’s approaching fast and I have high hopes but now I ask myself

Will we be iv free?

Will we return to school/work in January?

Will we be free of lots of oral meds?

What does the immediate future hold for us all?

Tomorrow we return to GOS for our first immunology appointment post transplant with consultant Waseem Qasim. We know he is usually proactive. We have a list of questions needing answers, we have high hopes.

Herbie continues to be in fine form albeit slightly rounder than he was due to excessive hunger from steroids. He meets his fluid target easily each day and he is fever free now for well over 5 weeks. We feel that we are standing still, we need to restart the meds wean and let this new immune system begin to grow and settle. It’s a balancing act, an art even, to juggle these medicines and start to withdraw some without causing some reaction.

Last week the bloods came in, looking very good still

WCC 7.2
HB 13.3
Neutrophils 6.51
Lymphocytes 0.22
Platelets 159

The only worrying result was a huge jump in a liver result called ALT which had leapt into the 100’s, double what it should be. It could just be a steroid reaction as other liver results were fine or a rogue result but with the amount of meds he is on it is a worry. That said we had no response from GOS when they received the results so we are assuming that they are not worried.

So tomorrow we head off to The Big Smoke…keep everything crossed for an informative and positive appointment (and speedy too if that’s not too greedy!)

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