Category Archives: Community spirit

Half a year ago…

T+183

6 MONTHS POST TRANSPLANT

I must warn you that I am about to share some photos that you may find difficult to view. I started this blog when we knew Herbie needed an imminent bone marrow transplant but there had been many many difficult times before then. I’m not trying to shock you, this blog was always meant to be a positive and truthful account of our experiences but  in order to celebrate where we are today it’s important to realise how far we have travelled.

A year ago  our happy 4 year old had spent the day lethargic and with a fever.  He wasn’t able to go to school on the  following day…that’s where this BMT journey began.  We had also had other tough times with our boy, meningitis, lung problems and horrible lumps that needed surgery on his neck.

 

Reasons why we celebrate 6 months post transplant
Reasons why we celebrate 6 months post transplant

So today I reflect once again on the tough times that my youngest boy has gone through , since this time last year alone he has endured a lung biopsy and lung wash, 3 surgeries on his neck, insertion of a peg, insertion of a PICC line and then of a double lumen Hickman line. He’s had daily iv’s since December, he’s had more blood tests than I can count, he’s had skin biopsies , numerous X-rays , CT scans, lung function tests, ultra sounds and taken a mountain of drugs.
I know many children endure the same and worse but when you live through it with your own precious child it engulfs you.

However today’s post is actually meant to be a celebration! 6 months ago today that moment happened, Rufus gave his bone marrow to his brother and Herbie, fresh from chemotherapy, began the journey of the reconstruction of his immune system. Yes it’s been a roller coaster ride, yes there have been times when I’ve thought “when will this settle down” “when will we get home” “when will these meds stop” but here we are, still standing, still positive and still moving on.
Herbie found out this week that he is going to be Angel Gabriel in his school nativity! Dr Waseem says he can go back to school full time in the new year and visit before then. We are understandably nervous knowing what a breeding ground for bugs schools are at this time of the year. So he will be in the play if all is well but if it’s too risky they will record him and project him on a screen. I am so grateful to the teachers in Rufus and Herbie’s classes for making this possible. The inclusion has been wonderful.

In other news we are now weaned off of MMF which is great, one immunosuppressant down. On Wednesday, if their is no sign of GVHD returning, we can reduce the steroid (another immune suppressant ) too. Only by 2ml per dose but we are happy that the wean is slow and safe.
Herbie has had a good week. The steroids make him eat loads and he drinks his 1600ml required daily almost exclusively in chocolate milk and orange juice making his calorie intake rather impressive!

Eating bacon butties with Papa after the hub visit this week.& on Children In Need Day (hence the ears!!!)
Eating bacon butties with Papa after the hub visit this week.& on Children In Need Day (hence the ears!!!)

Bloods continue to make comforting reading

HB 14.3
WCC 10.9
Platelets 167
Neutrophils 9.37
Lymphocytes 0.22

Engraftment 100%
Cd4 220

We will keep on to the next appointment in December which will involve more tests and scans but hopefully good news and stopping of the iv!
Thank you to everyone near and far for every little bit of support so far, it means so much to us all xxxxx

He’s a champ!

T+75

My mobile let out the train whistle sound at 7.13am this morning and woke me with a start. For a split second my heart was in my mouth. The train whistle ring tone is reserved only for Dan. Herbie chose it when I got my first iPhone when he was just getting into trains. What was Dan’s message going to say?

It could be good news, no fevers, coming home etc but then again it was early, maybe Dan needed to offload a bad night?  I can’t explain how it feels to be so torn about where to be when one of your children is in hospital. Despite always wanting to be with Herbie 24 hours a day throughout his hospital experiences I need to go home for two main reasons.

1) we have three other young children at home who need me

2) you sometimes need to recharge the batteries to have strength and courage for the next steps

However leaving causing more stress at times, I’m not great at not knowing exactly what is going on and Dan often, and he’d be the first to admit this, doesn’t always take in what the doctors say.

So…when I heard the ringtone telling me a message was there from Dan I hesitated , just momentarily, wondering what news was winging it’s way to me. It was this…

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I was so relieved! I counted the hours, just shy of twelve since the last spike. If you have followed my blog throughout transplant you will know that this means nothing for the Herbster, back in GOSH just when we thought the spikes were over they returned. However I remained optimistic and was able to start the day with a bigger smile than the day before!
Further texts confirmed he was up, dressed and watching the LEGO movie, for the umpteenth time!

I know that we were incredibly fortunate to have a sibling donor in Rufus but once again let me stress just how much lives can be changed by having a bone marrow match. Not just the recipient but those around them that love them. Anthony Nolan were highlighting this again today on their Facebook page. I was pleased to see that the boy highlighted not only made a full recovery from transplant in GOSH three years ago but was a PID patient. He had Chronic Granulomatous Disorder, like Herb & Lily’s NEMO it is extremely rare. We met a family during our time in GOSH whose son was also suffering from this, thankfully he was also found a donor through Anthony Nolan. Many people who hear the words Bone marrow transplant automatically assume cancer and leukaemia are the reasons for needing one. They often are, but more and more Primary Immune Deficiency patients are also being treated like Herbie and lots of the children we met on Fox and Robin Wards at GOSH. If you think you could be a donor please investigate further and to my friends and followers who are from the ethnic minority communities your help is even more precious as the are less registered donors but still the need. Like our other GOSH friend Milan.
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As well as being a bone marrow donor I have also often blogged about the need for blood donors and platelet donors. Herbie required more platelets again today, the fevers and cystitis had given his a bit of a hammering again, second transfusion in less than a week.
It’s a big thing to the recipients. Go register!

So after some quality time with the three of the Fab Four and a little retail therapy I headed back down the A40 to the JR with a happier outlook.
Dan had let me know that Herbie was still afebrile and he was drinking again and eating a little. All positive signs!

When I arrived my small Rice Krispie sat on the bed frowning and said “about time too”, the cheek was back. He looked so much better than yesterday and he was definitely brighter and was back singing and playing games. I heard about a visit from Victoria his outreach teacher and the lovely Bellhouse Drayson Ward Play Specialists with team Herb badges which Herbie was extremely proud of! They are so awesome! He also had a crown too! So pleased that Lily and Kitty did so well with the fundraising for Bellhouse Drayson (with thanks to Auntie Cathy too!) The girls have lots of fab toys for them.
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Lily is already planning the next fundraising activity for the JR!

Apparently, according to Herbie, the badges were much sort after…Dr Liam, who had visited and Teresa ,his nurse ,both wanted one he said. “Put them in your bag and take them home” he whispered “because I need to give them to my best friends Sam and Lily, Libby and James.” So it appeared even his own family were not allowed them! “I need my friends on my team too” he explained.

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Another thing to celebrate is his hair growth! Very exciting! My long haired boy will be back before I know it! My little Rice Krispie really is becoming Baby Pineapple (Lily’s nickname for him) with his spiky top!
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This weekend sees a friend’s daughter shave her head for charity. It’s her 12th birthday and she is giving her hair as a gift to a wig making charity? Such a courageous thing to do. Drop by at the a Turner Hall in North Leigh this Saturday to be part of her big fundraising day. Shannon is pictured below with her lovely mum Sarah and our dear friend Leigh whose son and our ‘adoptive nephew’ Hugo also lost his hair during his battle with ALL (Leukaemia ). Thankfully he is now recovered and sporting a rather amazing head of curls!
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So I left Herbie with a dairylea dunker and no temperature, 100% SATS and the knowledge that he seemed to have turned a corner today, even the cystitis is greatly improved with just a trace of blood measuring in his wee now (and not an oestrogen patch to be seen yet!)
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It feels like we are winning. As nothing has grown yet he needs to complete the antibiotic course, this may make going home tricky but we will see.
The pump has arrived for the water at home, we just need our Small back!
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What a difference a week makes…

T+63 and 1 week at home.

This time last week we were spending our first night at home together and Herbie was spending his first night at home in 9 and a half weeks. This past week has been so busy but today school broke up for summer so finally we feel like we might get to relax a little. For this reason I will take a few days away from the blog. I will of course return but finally things are ticking along nicely.

A call from Maria, one of our BMT nurses, today confirmed our first clinic appointment back at GOSH will be next Wednesday at 12.30pm. Ciclosporin level bloods were reported as high but I explained my first week blunder of forgetting to hold a dose back before the test.

Herbie continues to be hungry and spends most of his day asking what he can eat. I really do have my very own mini Buddha!

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He has thankfully chosen to stay indoors during this very hot weather and another plus is that he was thirsty quite a bit today, managing to hit his 1500ml in record time. Today’s target was reached by 2pm!

We were grateful this week to receive many welcome home cards from so many old friends and family and even a lovely one from a member of staff at Herbie’s school. Herbie was especially pleased to get a letter from Hope. It arrived via GOSH thanks to Bev in the office. He says that he does know about geocaching and his big sisters are in the scouts and helped place the ones you mentioned!

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Today’s BMT fact:

18 to 44 year-olds are called as a bone marrow match for a patient over 90% of the time.

Age guidelines are not meant to discriminate. They are meant to protect the safety of the donor and provide the best possible outcome for the patient.

Think about becoming a donor and giving someone a chance!

Call me , call me …

T+60

When you leave the safety net of Great Ormond Street Hospital and the experienced nursing and consultant team it is difficult when you question yourself and can’t just nip out to the nurses station to get a definitive answer. Before leaving there is a ‘discharge talk ‘ but there is so much to take on board that suddenly you find yourself trying to recall conversations, thumbing through the shared care folder and generally mistrusting your memory!

This morning was our first real taste of this, just 4 days after leaving GOS. Herbie woke complaining that he felt itchy. We looked at his skin, it looked a little blotchy. Was it his GVHD rearing it’s ugly head? Was it something viral? What should we do?
We decided that it might be the GVHD, we applied his Tacrolimus cream in the hope of catching it before it got worse. He was fine other than this. The folder says ring if there is a rash, the drug chart said to use Tacrolimus as and when needed , so did we need to ring?

We decided that we would see how it progressed over the next few hours.
Herbie was a drinking and eating machine this morning. By 11am he had already consumed 750mls of his 1500mls and munched his way through crumpets, carrot sticks, dairy lea dunkers, more carrot sticks, and then he requested lunch!

When Dan’s mum called about booking the chimney sweep as we always do for August, I was transported back to the discharge talk. What had they said, I suddenly remembered they were going to check and get back to us but I don’t think anyone did. There was also the question about dogs and the rash…it was time to put in a call to the BMT nurse specialists. I left my queries on the answering machine and awaited a return call.

Lunch was eaten but as it did yesterday it kind of rolled on into a snack and the snack went on until dinner time. The fluid target was reached by 3pm with a selection of drinks including two cups of hot chocolate on what was probably one of the warmest days thus year!!
He had a very stationary day today choosing the ipad and TV over games and being outdoors.

Community nurse Laura arrived, there were more blood samples to be taken before the Amikacin and Micafungin iv’s commenced. There were no results back yet from yesterday’s bloods…that’s now 4 days since we have known what was going on inside. It’s a bit odd after 9+ weeks of knowing the blood results each day.

The phone call from the BMT nurse, my mums arrival and school pick up all came at the same time. I sent my mum packing to the school playground and chatted to the nurse on the phone.
After careful discussion we had answers…
1) no chimney sweep for 6 months!
2) rash probably caused by going back to old body wash
3)no contact with dogs, regardless of inoculation.

Honestly there are so many rules.

I had another community moment today, thanks to Justin, I know your other half Sarah reads the blog so she will pass on my thanks. The little acts of kindness are the ones that always make me cry.

With fluid intake targets exceeded and a full tummy Herbie went to bed ready to do it all again tomorrow.
One more week until we head back to GOS for our first BMT outpatients appointment.

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HO HO HO …it’s drawing nearer

T+54

I want to start the blog by talking about community tonight.
This whole transplant journey to date has shown me that community spirit is still very much alive out there. So many things over the last few months that I have written about here in the blog that have really amazed me. North Leigh School super hero day…what a thoughtful gesture to celebrate my brave boys whilst the children have fun and learn and raise money for GOSH. The school really have supported our family so well prior to and during BMT. They have looked after Lily, Kitty & Rufus, valuing them and supporting them and ensured Herbie has always felt part of the school despite not properly attending since November 2013! The Skype sessions with his class, the post and books sent, gifts from teachers and teaching assistants. The community spirit extends beyond the school, fellow Nor Lye residents donating money to the Dream Team from prize money for winning races to best scarecrow. The net goes wider… To my school community. Witney Community Primary staff have supported me through this, making it easier for me to dedicate my time to my family but giving me the space to return, the parents have sent messages of support and gifts to Great Ormond Street, one even plans a Super hero day at her nursery to raise money for GOSH. BUT the net goes wider still…
This morning I receive a text from Herbie’s wonderful outreach teacher telling me that she was at Blake School in Witney watching the Y6 class do their end of year play. They chose 3 charities , one being GOSH , to raise money for and named Herbie as their reason for the choice! Then I receive a message from a friend and fellow FS teacher at the same school saying they also want to do a superhero day next week too , all proceeds to GOSH! I’m overwhelmed by everyone’s thoughtfulness and support.

I headed back to London this morning, arriving in time to go through the discharge talk with Rehka and Dan. Quite a lot to take on board there! Then there was the meds to prepare and administer.
Herbie was thrilled to see Rehka.

Rehka and Herbie
Rehka and Herbie

They had a real giggle today.
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Dan left to go home briefly and watch the girls play leaving Herbie to enjoy his post!

Thanks Lily & Sam for the brill books and room decoration
Thanks Lily & Sam for the brill books and room decoration
Thank you Harry!
Thank you Harry!
Thanks Donna and Richard.
Thanks Donna and Richard.
Thanks Rachel, Ade, Sid and Archie.
Thanks Rachel, Ade, Sid and Archie.

He doesn’t have one, he loves the Mixel and it’s all brill (including Dan and I’s treat.)

Thanks Jo, Richard, Elsie, Meg and Seren!
Thanks Jo, Richard, Elsie, Meg and Seren!
News from Floss!
News from Floss!

Jess was his teacher again but Helen popped by with his learning record of her time as his teacher.image

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Herbie was quite sad about the possibility of not seeing Helen again and promised to look for her when he comes back for clinic.

The bloods were in
HB 103
WCC 12.12
Neutrophils 9.85
Lymphocytes 1.45
Platelets 160

Kidney and Liver functions improving daily.

There was the obligatory walk to the vending machine to purchase steroid hunger foods.
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There was also some superhero action.
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Sarah , one of the HCAs , looked after him tonight. She also looked after Lily this time last year!
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After our late night Skatoony episodes Herbie escaped onto the ward! He was hilarious and loud!
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But ended up with tummy ache again from running about!

A full tummy and over 2000mls of fluid drunk meant he felt asleep immediately.
I did his 11pm meds and now I must sleep! One of the nurses, Emma, went on holiday today, she left him this note!
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Tomorrow is another day closer …
HO! HO! HO!
I just can’t say it! Fingers crossed xxxx