Overnight stay and more tubes (and I don’t mean the trains)

So Thursday morning came and after an early iv of Ambisome with the community nurses it was time for our first ‘overnighter’ at GOSH. Last year Dan and Lily spent a week there but myself, Herbie & Ru have only ever done outpatient appointments there.

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We travelled by car and arrived attempting to locate our plans for the day, that we were informed had been left at the main reception along with details of our booking for the patient hotel. After a quick walk we were greeted with a very busy and cramped reception, whilst we waited in the queue, apart from the inevitable ‘ mummy, I need a wee!” , I suddenly heard my mobile ringing and to my amusement it was showing ‘Great Ormond Street ‘ as the caller! I had to step outside to get a good signal and left Dan in charge of the boys and obtaining the envelope of goodies from reception.

The call was very apologetic, there was a mix up, Rufus couldn’t have his HTA assessment as planned on Friday now and it would need rebooking next week. I was already feeling anxious about the two days ahead but this added to my stress, we had Rufus with us for two days now and he wasn’t needed! More annoyingly though it meant that our hospital free week prior to transplant would now have a visit to GOSH.  I  returned to Dan with the news only to see him looking highly confused at the main desk. Nothing for us there! No envelope, no details. The mobile rang again, the BBC were expecting us too! We went out again to look for the patient hotel which we knew was opposite, perhaps the paperwork was there? After looking , rather hurriedly, we couldn’t see it. Anxiety levels were now high! Thankfully, Catey & Hiral , who are filming us, came to the rescue and showed us where it was…however relief was short lived as the hotel couldn’t confirm we had a room even though we had just been told by the BMT team on the phone that we did! Argh!!!

Take a deep breath… That’s what we did and then headed to Fox Ward, one of the BMT wards to meet with an occupational therapist who was assessing Herbie’s development for a baseline pre BMT. Herbie enjoyed the tasks and did really well. No development issues, as suspected! During this our paperwork arrived and we breathed a sigh of relief!
We then met with Nikki, one of the inpatient BMT nurse specialists who talked about what we needed to bring, do etc during transplant. I will need hair up, no rings, bracelets or watch to be worn (although wedding ring allowed), clean clothes daily and clean pj’s every night. We talked about Dan finding a room during the first three weeks and what Herbie could bring with him. The inevitable hair loss , pre BMT haircut & other details.
After the meeting we headed off to feed the troops and then book in at Western House, the patient hotel. We were told we had adjoining rooms that slept two in each. This was not the case, another grumpy moment as we realised Dan would be sharing with Ru & I would share with Herbie. Just then the mobile rang again…GOSH again! It appeared that Herbie’s previous blood tests showed a clotting issue so they wanted another test before surgery. So we headed back to Safari Daycare for a blood test.image
After bloods were taken & a treat from the hospital treasure box ( moshi monsters of course ) we headed to Nando’s as a treat before heading back to the communal room in the patient hotel where Catey & Hiral came to film us. My first tears were recorded 😦
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We finally got to bed, I didn’t sleep much, It doesn’t matter how many times you take a child to theatre , it’s still a worry.

On Friday we woke early, no breakfast as obviously Herbie was nil by mouth, but after speedily packing up we checked out and crossed the road to go back to the hospital. We were surprised to find that the temporary reception/entrance that we have used since we first attended GOSH and that we used only the night before was now closed and the proper one now open!
GOSH ENTRANCE
It was fabulous, all light, airy and very colourful!
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Herbie was admitted to Robin Ward and prepped for surgery, he was first on the list. Once consents were signed we headed off to theatre, Herb in his gown and Dog Dog with his name label on too.
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We said see you soon and Dan & Herbie went into the anaesthetic room, Catey filmed the procedure which will be strange if it hits the TV screens next year!
We took Ru for breakfast and expected a call in an hour and a half to go to recovery but the call came in less than an hour!
Herbie was a tad grumpy but ok until he saw the PEG in his tummy. It was a shock to him.
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The PEG is there so that during transplant, if he becomes too unwell to eat or take oral meds , they can reach the stomach via this tube. It avoids having the tube in the nose which I know he would hate. He’s extremely scared of his PEG coming out, we have tried to explain to him that it is secure. He spent the day quite subdued.
We met Maria , the outpatient BMT nurse & James the dietician to discuss transplant. Rufus was a good boy in such a confined space but I took him out to look at the new virtual fish pond in the brand new reception and to play in the Walt Disney play area in the Lagoon Restaurant. He had a great time and was thrilled to see the Peter Pan statue unveiled once more.
Virtual pond
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Herbie and I had to say goodnight to Ru & Daddy as they left us to overnight in our isolation room in Robin ward. They went home to the girls.
Herbie slept from early on and had a peaceful night.
I woke this morning, April 26th, my birthday! Herbie was the only family member with me! The nurses gave me card which was lovely.
Dan returned around 2.30pm & we finally escaped to return home at 5pm. I was totally amazed by the birthday love I found on returning home.
I climbed into bed with one thought, 10 days before the roller coaster starts it’s descent
x x

Rainbows, rings and ponderings…

Since my initial post regarding the wish granted by https://www.raysofsunshine.org.uk
Herbie has literally spent every day playing happily on his “treehouse”.  It has been wonderful to see the whole family enjoying it in so many ways from the obvious up the ladder & down the slide with a shriek to movie madness with the film of the moment for Herb, Moshi Movie on the ipad with a few cushions and an Easter egg! Sarah, one of his brilliant community nurses, even let him have his iv meds up there on Monday! As you can see this was met with great appreciation!Image

So when the rainbow hammock arrived in the post, all the way from France, a fact that thrilled Herbie, and the heavens opened it was a disappointment. Looks like we will need to wait until we get back from GOS at the weekend before it can be tested. It looks fab though.

Rainbow loveliness
So on a different note my birthday is fast approaching and I will be spending it in a hospital ward in Great Ormond Street, #anotherrubbishbirthdayforthetaylors . Over 6 years ago a group of lovely friends clubbed together and purchased a ring from Nelle & Lizzy ( http://www.nelleandlizzy.com ) to celebrate the birth of Rufus and what we all thought was the completion of my family! It was a three band Russian wedding ring with Lily, Kitty & Rufus stamped on each band. I have treasured it since the moment I received it and rarely take it off but in the last year I have been more than a little concerned about the lack of Herbie’s name. I know it’s so silly but honestly it has kept me awake at night! So Dan agreed we needed an addition! The problem was that they didn’t make 4 band rings and I didn’t want to replace the original. Anyway, we ordered a double band…one has Herbie & Dan on it and the other says “love you to the moon and back”. It finally arrived this week, an early birthday gift and I LOVE IT! I can go to transplant knowing my whole family is represented on my finger. The £18.95 customs fee was a sting but couldn’t dampen my excitement!
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We also had another pre BMT test this week. Audiology to check his baseline hearing.
Herbie was not impressed that the person doing the test thought he was a girl and decide to be a stroppy patient! Oops!
Audiology
Eventually he co-operated and we were out of the JR In Oxford in record time with news that his hearing was totally normal. Yippee, good news after so much iv amikacin last year and this!
Audiology results

So tonight I am reflecting on my day with Herbie as tomorrow we head back to GOS to get Herbie’s peg inserted and for Rufus to have his HTA assessment. That precious boy really is amazing. As we drove to collect his new moshi pj’s he selected tracks to listen to on the way.
http://m.youtube.com/watch?feature=kp&v=cuZo7pLnL7c
Noone’s gonna love you by Band of Horses

Followed by
http://m.youtube.com/watch?v=uAOR6ib95kQ
Dare by Gorillaz

He spent ages discussing the lyrics and pondering life in general. He seemed so grown up, older than his five years.

I read the transplant book to him when we got home, it suddenly seemed appropriate. It was just the two of us. Herbie was not happy about the Hickman Line replacing the PICC but I explained the positives. He was most concerned about the word chemotherapy, he knows that Daddy has had chemo to get rid of cancer before he was born. He cried when I told him he would be in isolation for a while and couldn’t see his brother and sister but it was brief and he asked “will you be there Mummy?” “You bet I will” was my reply and one that was followed by a huge hug and kisses all over my face! He then asks that I read the book for Rufus about being a donor. When I finished he said “blimey he’s not going to like that” and laughed…that’s my boy!

He was given a card later from the son of our close friends who recently finished 3 years of chemo / treatment for Leukaemia. Mr H & Herbie are alike in many ways, they both LOVE trains, their iPads and they are made of tough tough stuff.
Inside the card were two of Mr H’s Hickman line pouches. Suddenly the line wasn’t so scary.
Mr H's gift

Fundraising is still going well, £1140 at last count but there is still plenty of time to sponsor so hit the button below!
JustGiving - Sponsor me now!

Oh and remember it’s still Primary Immune Deficiency awareness week. No idea what that means? I am sure you are not alone so take a moment to click the link below and educate yourself and spread the word. Some of my lovely friends on FB already have xxxx

http://www.piduk.org/livingwithpids/forparentsofchildrenwithpids/parentandchildrenstories

So time to get some sleep…iv ambisome in the morning at 8am, goodbyes to the girls and heading to GOS straight afterwards. The adventure continues…and yes I’m getting more nervous by the day!

Close your eyes and make a wish…

Things are starting to ‘hot up’ now as we draw ever closer to ‘the date’.

This week we have been to Great Ormond Street again for a plethora of tests, dental checks (to ensure no signs of infection or possible infection before transplant in the mouth/teeth), a lung function test to get a baseline of his lungs capacity and ability, blood tests, medical for Rufus (who is super fit and ready to go apparently) and a baseline ECG. All of this was documented by the cameras. Paul Veys once again put us at ease and answered our questions honestly but calmly. Herbie is to drop his steroid intake again before transplant and during his medical they seemed pleased with him although slightly confused by the random temperatures he keeps getting. My mum, Mimi, came too as she wanted to familiarise herself with the hospital as she is going to be our third named person. Once in isolation Herbie can only have three named family members in his room to help lower the risk of infection. 

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We got home from GOS AT 7pm that night, next week we are there again. This time for Ru’s HTA assessment to ensure he is not being coerced into being a donor and for Herbie to have his PEG feeding tube inserted. I feel a bit apprehensive about it all, I know this is the beginning of it …no turning back. 

On a happier note, Herbie’s wish from Rays of Sunshine was delivered on the same day as the GOSH visit. On Good Friday Dan’s family arrived to help put it together. After many hours, lots of drilling, cups of tea and reading of instructions it was done! Herbie was thrilled! 

 

Wishtastic
He has spent many happy hours playing in his “treehouse” (as he calls it) and the customisation is almost complete, solar twinkly fairy lights added, blackboard, telescopes and a play phone. Rainbow hammock and ships steering wheel are on their way too. The hope is that on his return from transplant he will have this to amuse him through the summer when he is having to stay home.
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Big thanks to Rays of Sunshine charity for granting his wish!

So fundraising update is that in just a week we have almost raised £1000 for GOSHCC (Great Ormond Street Hospital Charity) and another family member has joined Herbie’s dream team!
If you want to support the team as they run 10K click below and donate!
JustGiving - Sponsor me now!

I think I will need to step up my posts now as there is too much happening to just post once a week.
I leave you with an anecdote from today’s family Easter Egg hunt. Herbie’s great friends , the twins Lily & Sam, were so thrilled to see him today at the Easter celebrations. Lily & Herbie spent ages sitting closely playing on the ipad
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And as he left Sam asked “when will Herbie be back to school every day? ” adding “I hope it’s soon”
A wet eye moment… “Soon Sam, when my immune system works, soon” replied Herbie

Yep the boy was forced to take a break from his treehouse...
Yep the boy was forced to take a break from his treehouse…

Support Primary Immune Deficiency awareness week this coming week. Check out their website
http://www.piduk.org

Making a list and checking it twice!

No I know it’s not Christmas but I am a list maker. There is nothing more therapeutic than making a list and watching things being ticked off. It may be a female thing or a teacher thing but whatever it is lists make me happy!

This week there have been many list making sessions. As the BMT gets nearer there seems to be so much to do. I have been rereading the booklet given to us by Paul Veys a few weeks ago and have to say ‘hats off’ to GOSH for an informative document.
I have started many lists based on the contents of it. Questions to ask on our next visit, things to purchase, things to sort out etc etc.

Herbie and Dan and I will need new clothes each day and new pj’s every night. This means some nightwear purchases are imminent! One of Herbie’s lovely aunties has already provided some fabulous Marvel pj’s for Herbie and he has also added a few pairs of Muppet Pj’s to his collection!
We need to take photo’s of the family that have been laminated. We need to organise which toys etc he will take.

One thing I am keen to organise is regular post arriving for Herbie. I am hoping that he will get something daily from friends, school friends and family. I think that will really lift his spirits and I know it will lift mine! Since he became unwell he has had a couple of letters from an unknown source, calling themselves Jack Frost , and these have been so exciting for him that I think he would love to get post every day.
Getting post
Let me know if you want to be part of the post idea.

Not being at home also means lists for those left behind. Grandparents need to know what clubs etc are on which days for the rest of the children and Lily has daily meds and times and amounts need to be listed to make sure they are confident in our absence. The community nurses have helped with making lists of medicines for reorder and also dates for Lily’s immunoglobulin replacement therapy which happens weekly.

There is a long list of pre BMT tests that need completing for Herbie and a few for Rufus.

So what has been happening this week when I have not been writing lists?

We were visited by two producers from the BBC who interviewed us all at home and shot some footage of the kids playing.
Being filmed
The children loved the attention and all totally believed they will be TV stars, I did warn them that we may not even feature!

Herbie got another fever on Saturday morning scuppering plans for a fun packed day. The ear thermometer is still a scary object for me after the months of continuous fevers from November. I fear that once they start they will become like before, barely controllable with calpol and nurofen, so regular that it’s easier to count the hours in a day with a fever than without and a sign that the bacteria is winning. Thankfully the fever on Saturday was controlled with one dose of calpol and didn’t return today so fingers crossed its nothing to worry about.

Herbie has been in fine form the last few days, this is brilliant in so many ways but only goes to make it harder to think of him going into hospital to be made to feel awful. He will need a Hickman Line & the Peg feeding tube in before transplant too so surgery twice … Sigh.

So I finish my entry today on a fundraising note. So many different people have been important in our journey so far that we want to say thank you to. Only this week I have been asked for details of a charity for people to raise money for to help Herbie. Dan, my sister Charlie, my sister in law Lucy and brother in law Joffy are all running 10k for Great Ormond Street in September
JustGiving - Sponsor me now!
Click above to sponsor them, every little helps, or text HERB57 followed by an amount such as £2 to 70070. I will keep you updated on their progress.
We will also be doing things later in the year for The Children’s Hospital in Oxford who have been such a major part in this story and will continue to be post transplant and The Children’s Community Nurse service who have provided care above and beyond the call of duty, made life easier and become our friends
http://www.oxfordhealth.nhs.uk/?service_description=childrens-community-nursing-service
http://www.ouh.nhs.uk/charity/what-we-do/chox/default.aspx
And PIDUK, the charity support people with Primary Immune Deficiencies
http://www.piduk.org
Who have been great and last but by no means least
Rays of Sunshine who grant wishes for sick children who called this week to say Herbie will get his wish granted 😃
https://www.raysofsunshine.org.uk

Please take time to check these links and donate where, when you can.

Off to make a list…

One month until we go to transplant

I woke this morning and this was my first thought, 1 month until we go to transplant. How did I feel?  I felt scared, worried, panic…it’s so soon, it’s too soon!

I hate how confused this journey can make me feel at times. Some days I’m like a warrior, fighting, head held high, no fear, no second thoughts.  Some days I’m like a timid mouse, tentatively peeking out , hoping the predators won’t see me, hoping I can get a day free from the pressure to just enjoy my life.  Occasionally I am just like a child who has been reprimanded for something that they haven’t done…confused, bewildered and asking ‘why me?’  I want to be the warrior every day but I’m human and this is real life not Game of Thrones!

Monday arrived with phone calls… GOS called to discuss the small procedure to put a peg in Herbie’s tummy for use during transplant. This will be there should he need to be fed, have medicines etc and he refuses or is too unwell. The alternative is a feeding tube through the nose. We have discussed this at length and decided that although it involves additional surgery we believe it will help him no end as he hated even the oxygen tubes up his nose and MRSA swabs in previous admissions. I hope we are making the right decision. Sadly it means a one night stay at GOS prior to the BMT date and we have lots of tests to do on other dates too. It’s becoming quite tight fitting it all in. Annoyingly some of the pre BMT tests we have already travelled to London for need repeating as they must be performed within 30 days of transplant and are now out of date.

As well as the PEG insertion Herbie needs to have blood tests, ECG, lung function, a kidney function test, dental checks and a hearing check. Sadly only the hearing check seems to be allowed to be done in Oxford which is pain.

Herbie and Rufus have been discussing the new immune system Herbie needs. It was a moist eyed moment when Ru gave Herbie a picture he had drawn of IGGY and Mr. Snoodles (Herbie’s two favourite Moshi Monsters) with the title “I’m going to help you”. Rufus is understandably scared, he wants to help but he’s scared of “sleepy medicine” and also “needles & blood tests”. I’m scared for him.

I'm going to help you
I’m going to help you

Another call from the TB nurse. I hadn’t mentioned this before but a few weeks ago Rufus and Kitty had to have a Mantoux test for TB. Both Lily and Herbie have an atypical mycobacterium in the TB complex that has caused their infections. This means they take TB medicines despite NOT having normal TB or a TB that they can spread. The test is an injection of PPD tuberculin under the skin. The test is read 72 hours later, a red raised patch is measured if it comes up, anything over 6mm is considered a positive result for a TB bacterium presence. Ru had zero but Kitty had 7mm. You can imagine the devastation we felt at this news. Was she at risk of the same as her twin and her little brother? It certainly crossed her mind and ours. Thankfully our consultant team at the JR were pretty sure it was all fine but we agreed to an X-ray and blood test to be sure. The x-ray was taken last week and was fine, the blood was also taken last week and the call came at the weekend and then again today to say it was negative. Thankfully some good news!

Finally a call from the delivery company for the subcut immunoglobulin supplies. Both Lily & Herbie had their infusions at the weekend. The Buzzy’s still help and this weekend the children were excited to get their banners and balloons for World Primary Immune Awareness Week.
Infusion day
http://www.worldpiweek.org
We will be taking a photo with the banner and balloons and posting it everywhere during the week commencing April 22nd.
We wil also be encouraging people to donate to PIDuk to help raise awareness of the need to Test Diagnose Treat.
http://www.piduk.org
So we have lots to do in the next month, lots to sort out, lots of decisions to make but most importantly lots of quality time to spend with our lovely children as a family before we are forced apart for at least 8 weeks…
PID awareness week

Cheeky boy, meeting Paul Veys and other ponderings…

Herbie continues to improve daily. He really is such a cheeky monkey and his personality is back , as is his colour, weight and energy. He is definitely the best he has been since this latest episode began back in November 2013. This is great in terms of day to day for him and us but also great as we get closer to the countdown to transplant.

Last week saw our very first appointment at GOSH in the BMT clinic. We took Rufus with us purely to see what the hospital was like, he was quite excited. Although we have been going to Great Ormond Street since last summer we always see the immunology team there so we were in exactly the same place etc but we saw a new specialist, the director of Bone Marrow Transplants at GOSH, Paul Veys. He was fab, totally clear description of the what’s, why’s and how’s of transplant and also calm delivery making us feel confident that this was the right course of action.
We left feeling full of faith in the team/hospital.
The reading materials that he gave to us to look over were rather jammed packed but highly informative!
Before BMT there are lots of tests that need doing and although we have done a few there are more to do. There were lists of foods that he won’t be able to eat, rules about daily clothing , pyjama and bedding changes and lots of info about the chemo, side effects and problems that could arise.
Still a scary read but also so many medical terms and medicine names etc that we are already very familiar with.

Paul Veys told us we were pencilled in for transplant in May but at that point he wasn’t able to give us a date. We were interviewed by the BBC again and the meeting with Paul Veys was recorded. New medicines were added to the already full regime and we headed back to Oxford in a positive headspace.

We have also visited the JR this week for catch up with our Oxford team. All looked good and I finally was able to look ahead a little.

Not working since November has been incredibly tricky. I love my job as a primary school teacher and miss the children so much but my boy had to come first, I know every mother of the children in my class would feel the same. That said I started thinking that as Herbie was finding his way back to school a few days a week then maybe I should too. So I agreed to return this week. Imagine my despair on waking this morning to find Herbie was sporting a temperature of 38.1! He was unable to go to school as planned and I went in to work , for the first time in months , feeling more uptight and anxious than I had anticipated. The fantastic children were such a delight and lifted my spirits, even answering the register with “good morning lovely Mrs Taylor” which was so sweet! I got home with a thumping headache and feeling drained to find a boy looking happy and quite normal. By bed time he was pyrexial again at 39! Gutted.

The phone call finally came after an hour at home, Maria , the BMT nurse at GOSH had info on dates etc for transplant. So we can now begin planning…count down begins…Medicine list