Dear Herbie

Dear Herbie,

I wanted to write to you to tell you about the choices we are making on your behalf. When I found out that I was pregnant with you almost 6 years ago I knew that , as you were already there against the odds, you were a fighter, a tough cookie and coming to us for a reason. You have shown that you are all of these things and so much more and we can’t imagine our family without you. For that reason we have decided to enter into a Bone Marrow Transplant for you to hopefully give you a new immune system capable of protecting you for the rest of your life and to put an end to the daily bravery you face.

It sounds easy…it won’t be my Small, it will be tough. Tough for me and for Daddy and everyone who loves you but toughest for you. There will be days when you feel so ill you will wonder why we chose this but one day soon it will hopefully become clear as you begin to feel strong. We have watched you get stronger every day since Christmas but you still have to endure daily iv’s, a plethora of oral meds and countless appointments involving  prodding, poking and blood tests. It’s not what we want for our five year old baby…you were put here for great things, they are still to come and that is why we have agreed to the transplant. You are amazing, such a trooper and we are always so proud of you and amazed by your courage and strength and your ability to still make us smile even on the toughest of days.

Transplant means at least 8 weeks away from home, it’s so hard to imagine being apart from Lily, Kitty & Ru for so long but mummy thinks of it as a ‘long term’ at school. We can do this. We will be with you every step of the way, I can’t give many 100% guarantees in life but one I can give is that we love you more than words can ever express and will do everything we can to give the chance of a happy, healthy and fun life.

So on Mother’s Day 2014, as I write this and recall the elation of my first Mother’s Day as a mummy to 4 in 2009, the devastation of Mother’s Day 2010 as I watched you taken from my arms by a paramedic, fighting for your life as meningitis threatened to take you from me, happiness of Mother’s Day 2011 to have you well and happy a year on, I find myself looking to Mother’s Day 2015 when hopefully these tough days will be a memory and we will be celebrating almost a year since transplant.

Be strong Small and I will be strong with you. Together we will be positive and get through this xxxxx
I love you and so does Daddy xxx
Hugs, snugs and kisses
Mummy
Xxxxxxx

Medication , surgery and a “normal weekend”

So let’s talk medication…I’m not talking Calpol, Nurofen or Piriton (although I have all 3 of those too) but hospital prescribed medication of which my house seems to be full to bursting!

First we have this little lot. This is the Community Nurse equipment and the iv supplies. Every night we charge the pump for them but literally this is their domain (although I have been known to raid it for steri-strips at some unearthly hour after Herbie’s first neck surgery!)

Then we have the daily oral meds, our domain, given once or twice a day. Some need disguising in juice, others need a drink on hand immediately after and one is bright red, looks like blood and stains everything it touches.

Finally our immunoglobulin replacement therapy kit, weekly for Lily, fortnightly for Herbie, a subcutaneous infusion that goes through the needles into their thighs over an hour. Again administered by us.

This weekend we have administered all of these things, some daily, some twice a day and some just the once over the weekend but amazingly it’s felt like a ‘normal’ weekend. This is our normal now. We managed a cinema trip, playing in the garden, visits to family & friends around all of this and it felt good. Now it’s time to pack a bag , taking the medical supplies and notes from the nurses with us, as tomorrow (Monday) we head back to the JR Children’s Hospital for 7.30am, Herbie is to be starved from midnight tonight and hopefully tomorrow morning he will have surgery to have the last infected lymph removed from his neck.
He still has healing wounds from the three removed just 2 weeks ago and lovely bright scars from the two removed 3 weeks before that! Poor Small, he’s had so much surgery, hopefully tomorrow will be the end of the neck lumps.

“He’s not missing much…he’s only in Foundation”

Some things make me so angry that I really feel my head may explode. I think one of the most annoying comments during this recent bout of illness for Herbie is the one regarding his education. In September 2013 Herbie started Primary School. He was so excited, his new class opened a whole world of opportunity. He asked daily when he would get his first reading book, told me in detail each lesson in maths, phonics and made us proud with his eagerness to learn. He had seen his big sisters and brother attend this school, he knew the drill, he wanted in! His puffed out chest and smiling face as he first put on his uniform is forever imprinted on my memory. He is a social butterfly, when I ask every day at 3pm “who did you play with today?” He replies “everyone, I like everyone, they are all my friends”. He tells me about the Christmas play, his dream to be a sheep in it (?) and sings the songs he’s started learning. He brings amazing junk models home and pretty much hogs the Monsters Inc Sully costume on a daily basis.
By his first parent’s evening in November he is off school ill, he has had a temperature for 2 days. “He’s made a great start” his teacher tells me “he’s such a comedian too”. He is, Herbie loves nothing more than ‘having a giggle and making people laugh’. We often discuss his perfect comic timing! I tell her, he’ll be back soon. Couple of days off at the most.

Herbie hasn’t been back to school since November 15th 2013.

Apparently many people believe this isn’t an issue…it is. Maybe they forget that I myself am a Foundation Stage teacher. I know exactly what he is missing and I know he wants to be back at school. During his hospital visits he attends hospital school when he can. He cooks, makes an amazing lantern, practises his phonics, his numbers and plays drums and other instruments. It’s a wonderful resource, he loves Juliet his teacher. During two weeks in lock down in a room in Bellhouse Drayson Ward in the Oxford Children’s hospital, Juliet brings school to him. We both look forward to this hour of respite , for me I can leave the room and drink tea! For him he can capture a moment or two of normality. One morning when the doctors come round they comment on how down he seems, he won’t speak or get up off of the bed. Finally he whispers to me why he is so down. His answer is not what I expect. He doesn’t ask to go home, to leave the confines of the room or even to have a break from the endless oral and iv medication. He simply says “why didn’t the teacher come, I wanted her to”

Juliet is brilliant, she tells me that he is entitled to outreach teaching and offers to liaise with everyone and sort it out. Today, March 3rd, Herbie had his first session with his outreach teacher, Victoria. He greets her dressed as a fox. He runs eagerly to see what she has in store and for just over an hour, as I potter around the house , they laugh, giggle and learn together. My heart sings! “When will she come again?” he asks just ten minutes after she has gone. “I want her to come every day.”

So the answer is “yes he is missing vital things when he can’t go to school” , he’s missed his first Christmas production, his first Christmas Fayre, First world book day and most of all he is missing out on learning and the social world of school that he loves so much. If they had witnessed his tears last Friday after he was reunited with his buddies in the playground when he asked me “can I go back to school now?” And I said “not yet” ,perhaps they would not say “it’s ok, he’s not missing much” …

Emotion commotion

Summer 2013

This week has seen a range of emotions. I started out with relief, that the surgery was over, the infected lymph removed and that we were home again. This became anxiety during and after the first dressing change. 3 wounds, very deep and packed, that needed unpacking and re packing. The screams could be heard from two storeys above. Anxiety turned to absolute sorrow and heart break for my baby boy having to go through such an ordeal.

Then happiness to see him looking so much happier and more like the old Herbie.  Frustration that his brother has impetigo & his sister a nasty virus, that I really wanted him to avoid but knew that I couldn’t. Sadness as we said farewell to one of our lovely Community Nurses as she left for pastures new after being part of our weekly routines since May 2013. Irritation at the minor obstacles put in our way by bureaucratic systems in various parts of our life and then joy at finally getting to the cinema with the children , over a week later than promised due to last weeks hospital stay.
The roller coaster has been interjected with brief feelings that also need mentioning…
Concern about what the biopsy results will show and why he has yet another lump growing on his neck.
Delight at meeting the outreach teacher who will start teaching him at home on Monday.
Thankful for the kindness and thoughtful words/actions of others.
So a week after our last hospital stay at least tonight I can drink my gin and tonic, listen to a mellow playlist and feel a small moment of contentment. It won’t last, I know it’s just a brief interlude but heck I’m happy to step off the roller coaster just for a few hours if only to let my head and stomach stop spinning!

Let’s start at the beginning…

You need a little background information before we get to the current situation so let’s start at the beginning.

Herbie was born one night in early January 2009. A perfect birth according to the midwives and one that made their night shift. We couldn’t have been happier to meet our fourth child, a surprise pregnancy at 40 but all good,and we left hospital 4 hours after he was born to collect our other son and head home to start life as a family of six.
Life was good and Herbie was a delight. Chubby, happy and a natural comedian from early on.
As we entered March 2010 Herbie became unwell with a virus. He struggled to kick it and we carried on thinking it would finally just fizzle out. The doctors gave antibiotics and seemed a little perplexed and eventually on Mother’s Day 2010 at some ridiculous time in the morning, my baby left home in an ambulance fighting for his life. Meningitis , a bacterial form was the cause but after a rocky three weeks in high dependency and lots of iv meds he left home and recovered well. Fast forward to February 2011, another hospital admission, an empyema, resulting a collapsed lung and chest drain. He also caught chicken pox and this came out whilst in hospital. A lovely doctor came to see us. “We want to investigate a little further, this may be just bad luck but it could be an immune deficiency”. At this point I can’t say I worried too much.
Lots of tests, lots of photos of his spikey teeth and blotchy skin and finally a decision to put him on a profalactic antibiotic, Azithromycin, three times a week. In December 2012 it was decided that he needed immunoglobulin replacement therapy every fortnight. This involves a subcutaneous injection into his legs using a pump, it lasts an hour. “Your son has a rare immune deficiency called NEMO” the consultant explained “don’t google it, read this leaflet instead”. I did both and felt numb.
Nemo is very rare, I found out that about 12 other people have it in the UK. People with it frequently get ill, and have quite severe bacterial infections. It’s passed on the X chromosome from the mother and therefore is usually a male only problem.
Fast forward to November 2013. After a difficult year , not for Herbie but for us as we learned that one of daughters, Lily, also had Nemo, extremely rare for a girl and she was quite ill during the summer, Herbie started getting high temperatures.
We had waited a few days then seen a GP, all was fine so probably a virus, two days later we went back, prescribed amoxicillin. Fevers continued and on Sunday, 6 days after it all started I went to A & E after calling our consultant team. The fevers continued, no other symptoms, our consultants were constantly talking, trying to eliminate possibilities. A chest X-ray showed a problem similar to Lily. My world started to crumble…
A lung wash, lung biopsy and various tests before Christmas showed atypical micabacteria like Lily. He started an intensive course of meds, iv’s daily and orals. He cried, he threw up, we cried. Christmas and his brothers 6th birthday & sisters 11th birthday passed by in a haze. We felt like we were living in a bubble.
2014 brought no relief, a routine appointment on Jan 7th uncovered a few spots on his abdomen, possible shingles which would be a disaster. He spent another 12 days in hospital, including his 5th birthday. He had a blood transfusion on his birthday, his liver started showing worrying signs, his spleen hugely enlarged and his lymph were up like bolts in his neck. He was out of hospital on Jan 19th but admitted again on the 24th to remove two infected lymph from his neck. A week or so of looking like things were back on an even keel. Daily 3 hour visits from our fabulous community nurse to administer iv’s and redress wounds were all we had to incorporate. Then on Feb 19th during a visit to Great Ormond Street hospital for pre Bone Marrow transplant tests an ultrasound on 3 more lymph in the neck showed infection again so back to the JR in Oxford we went to get them removed. So that’s where we are…home now, still on the meds, oral and iv. Awaiting more test results on biopsy of a lump on his arm, the stuff removed from his lymph. He is such a trooper. This blog will hopefully help me to write down the journey to and through and after transplant…welcome aboard our roller coaster , hold on tight!