Happy Mothers Day, Happy Birthday and WOW WOW, unbelieveable!

T+128

I have so much to write about that I’m not sure where to begin? So in the wise words of the King in Alice in Wonderland I’ll ” begin at the beginning and go on until I come to the end.”

Last Sunday Dan left for Wembley accompanied by my sister Charlie, my brother in law Joffy, Dan’s sister Lucy and our sister in law Wend and their solitary cheerleader , my brother in law, Mat. They were heading to the Sure Run to the Beat 2014 where they completed a 10k run. They managed to raise over £6,000 in sponsorship for Great Ormond Street Hospital Charity which was amazing.

Herbie's Dream Team
Herbie’s Dream Team

With that success in the bag the week continued in a positive mode. Monday was Herbie’s IVIG infusion day which meant an 8.30am appointment at the JR in Daycare. The traffic was bad and we arrived almost 25 minutes late but the nurses reassured us that it wasn’t a problem. Herbie also needed bloods taken for his weekly blood levels, ciclosporin levels, amikacin levels and, this week only, he needed the first of his line cultures to check for a line infection.
Although we had arrived at 9am by 10am nothing had happened. As 11am approached a student nurse popped in to do a set of obs. I pointed out that we had another appointment with community nurses at home at 2.30pm (IVIG takes about 3 hours to infuse). Although the nurses smiled sweetly nothing seemed to happen! Herbie was beginning to get rather fed up and so was I , finally at 12.50pm the bloods were taken! Nearly 4 hours after we arrived! The Gammaplex went up. It has to be given over 3 hours with the rate increasing over time if tolerated. Herbie sometimes gets back pain and despite Piriton he got it this time.the gammaplex kept getting air in the line as it was so frothy and so the alarms kept going off and it took ages!
image
We finally left the JR at 4.45pm and were home for 5.30pm , after battling Oxford’s rush hour, and greeted by the community nurse Sarah who was setting up his iv’s!
image

Herbie has remained fever free since my last entry and this means that we are now 18 days at home. Doesn’t sound much but the amazing fact is that that is the longest time spent at home since transplant!

Back in January of this year Herbie turned 5. He was in the JR and had a blood transfusion on that day. He had wanted a new green maxi micro scooter but we didn’t get one for his birthday as he was so unwell. Finally, at the grand old age of 5 years and 8 months Herbie was able to finally take ownership of a brand new, green, scooter! Happy belated birthday to my gorgeous boy. He loved scooting around the village on it!

Happy birthday (+8 months!) Herbalicious
Happy birthday (+8 months!) Herbalicious

First scoot on the new wheels
First scoot on the new wheels

However, as always he overdid it and got ‘tummy ache’ resulting in an hour of lethargy.
When Victoria, his outreach teacher, arrived he was not very responsive which was sad.
Herbie wasn’t the only one to have a late celebration. I finally got to use my Mother’s Day 2013 (no that isn’t a typo) voucher on Thursday and had a wonderful hour of pampering at The Junction in Witney. Happy Mother’s Day 2013 to me! I really needed that hour, it was a great recharge for my running on empty batteries!

As I type I can confirm that so far the line cultures are still negative for infection. Based on the fact that fevers have stopped that is hardly a surprise. The GVHD has resolved leaving his skin a tad blotchy (nothing new there!) and a little dry but nothing extra moisturising won’t cure. He is meeting fluid targets and thankfully hasn’t had an over night water bolus for weeks and no over night feed since his time in GOS. His meds remain unchanged but his bloods are looking much better again which we hope means that we are no longer derailed and are back on schedule.

HB 12.2
WCC 5.93
Neutrophils 5.16
Lymphocytes 0.30
Platelets 220

His HB and Platelets are fab, no transfusions for months, neutrophils & WCC back in normal range and lymphocytes coming back up nicely. Fingers crossed these improvements continue. Next bloods are Monday.

Herbie is enjoying the return of his outreach teaching. One hour a day again but this term he’s got a job share which is nice for him. New faces are always welcomed when you are home most of the time with restricted visitors. This week ,in keeping with his school theme, we made some soup. It was yummy!
imageimageimage

Dan and I are tentatively thinking ahead. It’s still very early days to make plans but we have so many lovely treats awaiting us courtesy of lovely friends and family that we finally feel we could think about using. Tea and cake at Huffkins, meals at The Fishes, The Chequers Smokehouse (a recent addition from my lovely work colleagues), afternoon tea at The Randolph and a meal at Cafe Rouge. Hopefully fun times ahead at last!

Friday was the eagerly anticipated Kate Bush gig. As previously blogged a wonderfully generous member of my family had offered us tickets way back in the year and it’s been pulling me through transplant ever since. Last week it transpired that only one of us would be able to make it after all as Sam’s name was printed on the tickets and photo id was required. Obviously we were disappointed but Dan, knowing that I have been a fan since she appeared in the seventies said I needed to go. Sam had done all he could via phone calls etc to try to get around the restrictions but had hit a brick wall.
Dan decided to come with me but go to the cinema whilst I went with Sam to see Kate! Traffic was awful and we arrived late to meet Sam who had been waiting outside the venue for at least 45 minutes! He asked us to try to get in together although signs everywhere screamed at us to get the photo Id ready. As expected the guy on the door said no entry without ID and we explained that we were with the ticket owner. Sam showed his ID and we were in! Sam didn’t get to see her in the end and I was totally overwhelmed by his generosity and thoughtfulness xxx We had an amazing night, The nineth wave was amazing and we were treated to a night that overloaded our senses, made me laugh and (for the first time ever) made me cry ( Running up that hill just transports me back to transplant now). All I can say is WOW WOW WOW WOW…UNBELIEVEABLE!

So I end this blog entry , 128 days post transplant, in a very positive place and feeling like I am on the edge of the diving board, about to plunge into the next pool. Hopefully this one is full of warm, crystal blue water and we can wallow there for a while.

image

Advertisements

Keeping us guessing

GVHD is a pain. What more can I say? It’s frustrating that Herbie even had it during transplant but for it to flare again so many days post is annoying.
When we left our local hospital last week we hoped that the new steroid dose would wipe it out. Sadly this didn’t happen. The rash didn’t really get worse but it was still ‘active’ and itchy and red. Last time Herbie’s hands and feet were awful , this time they are completely clear! It’s quite strange. It’s also odd to think that the rash is the new cells attacking Herbie’s body as foreign!

Last Friday I called GOS to let them know that the rash wasn’t really improving. I was called back later to say that the Dr, Robert , wanted us to up the steroid again. We did that from the 6pm dose and went to bed that night feeling confident that in a few days we would see an improvement.

Herbie was able to manage the itching with Piriton only which was good but anyone who has ever had an uncontrollable itch will know how annoying it can be. He was quite snappy and short tempered at times.

His spirits were lifted by a parcel of beautifully wrapped gifts from Kate and her lovely boys.

Thank you Tom & Ed
Thank you Tom & Ed


image

Something for all 4 children and this for me! Thank you Kate & crew
Something for all 4 children and this for me! Thank you Kate & crew

The weekend was lovely and Herbie enjoyed his first jaunt out on his scooter since transplant. He was so happy to be out in the fresh air, unleashed!
image

The GVHD continued to just ‘be there’ over the weekend. Dan and I thought we were going mad as we scoured his skin for any indication that it was retreating! In all honesty we both managed to find patches of improvement over the weekend but we knew deep down that the huge improvement that we longed for was still ‘on the run’.

GVHD rash on his arm
GVHD rash on his arm

On Monday, T+115, Victoria returned for the first time since the start of May to teach Herbie at home. He was looking forward to it but sadly just before she arrived he started saying he felt cold and shivery. His temperature was 37.5, my heart sank. We thought we were heading back to the local. Wrapped up in a hoodie and with a towel over his legs , he managed a session with Victoria. It was lovely to feel like we might be back to our old regime, a step closer to our original one too.

Once the school work was done he came back to the sofa and curled up a little but over the next 30 minutes he asked for food, drink and suddenly he seemed back to normal! His temperature returned to 36.8 and an hour later he was 36.4 and running about being cheeky!

Wednesday, T+117, was clinic day at GOSH and a week since we left the local. IV’s and bloods were done prior to getting into the car and then we headed to London. Traffic jams in Oxford and London made us late and we arrived 20 minutes after our appointment. I’d called through and been told it wasn’t a problem.
It’s funny how memories flood back as soon as you walk through the main entrance of the hospital. Thankfully Herbie was in fine form, unlike the previous visit, and things went smoothly. The waiting room was absolutely heaving and with some familiar faces too.

Waiting in Safari outpatients at GOSH
Waiting in Safari outpatients at GOSH

It was lovely to see the gorgeous baby Jack, whose story I had followed through BMT from the end of last year,and his mum Vicki and dad Rob. (You can follow his continuing story on Jack’s Journey on Facebook). He is facing a second BMT x
Then there were other faces from our time in BMT and it was fab to catch up with Esther and her gorgeous boy Ben who came out of transplant a few weeks after us.
We were finally called in to see a doctor at 2.15pm (0ver two hours after we arrived!)
It was a new doctor which I find unnerving at this stage of the game. She explained that the GVHD was only a stage 1-2 which was much better than last time and looked like it was active but recovering. In discussions about the fevers they decided it may be a mild line infection so they will culture both lumens on his Hickman Line on three separate occasions next week in the hope of catching the bug. If it’s not a line infection it may be the GVHD flare or some kind of auto immune response that cause the fevers.
There didn’t appear to be much to be concerned about though and everything else, his bloods etc, were very good and we are now transferred back to the immunology department with Dr Wasim for our next appointment in four weeks. Amazing! No med changes until the GVHD is gone and then the MMF wean can continue.

Bloods were as follows
HB 101
WCC 4.44
Neutrophils 3.33
Lymphocytes 0.23
Platelets 120
Engraftment still 100%

Herbie was as good as gold all day and yesterday woke bright and early and had another good day, eating and drinking well (haven’t used an over night water bolus for weeks now) and being happy and cool!

Odd food requests, carrots, baked beans and roasties!
Odd food requests, carrots, baked beans and roasties!

He met his Thursday/Friday teacher and really liked her and a new community nurse who also was new and got the seal of approval!

More goodies arrived for Herb,this time from Emma, who herself is feeling pretty grotty right now . Get well soon Emma and thanks for the fab Moshi/Lego gifts.

So here we are just about to enter T+120…
What a long road we have travelled so far and yet it stretches out before me into a hazy autumnal mist, calling us forward but giving away very little about the road up ahead and what we may encounter. For now though I am grateful that we are on our10th consecutive night at home, long may it continue!

Messages from his School  ALWAYS raise a smile
Messages from his School ALWAYS raise a smile

Taking the scenic route

Herbie had been really on top form since his last hospital stay and we honestly felt the best since transplant. Energy levels were great, eating well, drinking his target of 1600ml without problem and temperature staying below 36.5. We discussed regularly in the evening how things seemed on track at last.
T+108 came and I was greeted at 7.30am by a smiley boy, already dressed and on top form. I remarked to Dan how good it felt seeing him back to his old self every morning. Dan gave the 8am meds and headed off for a run. He has the 2014 Run to the Beat 10k for Great Ormond Street this month.
As soon as he had left Herbie complained of tummy ache. Now he does take lots of meds at 8am, 8 different ones, so occasionally he moans about tummy ache. I gave it half and hour but by then he was holding his tummy and quite upset. I took his temperature, 36.4, perfect, so gave him calpol for his tummy.
Dan returned from his run to find a little boy doubled up on the sofa, wincing saying “it really hurts, that calpol is rubbish”
I took his temperature, 37.5 suddenly…it felt like a rerun of the last time we were admitted. His temperature hit 38 and that, as we all know, automatically starts the admission and TAZ protocol (AGAIN) for a line infection. That means 48 hours in hospital even though I think everybody knew it wasn’t a line infection!

The timing of this admission was dreadful, the following day the twins were due to start secondary school, I still hadn’t managed to get shoes or trainers that would fit Kitty and Rufus started back a day later so we needed someone to look after him if we were in hospital.
There were many tears shed as I said we needed to contact GOS. However Herb just said “can I take Dogdog and my pillow please’
I was sad in one way that he’s resigned to going back in but happy in another that he wasn’t kicking up a fuss.

He slept on the hospital bed as soon as we arrived. He was very hot but once cultures were taken from his line he was given calpol. However he threw up and it was decided he needed it iv to ensure the temperature came down. His skin was getting very blotchy and Dan and I realised quite quickly that this was probably GVHD again. Our worry was that it was also in the gut.
The JR consulted with GOS and an ultrasound was ordered to see what was going on in there.
I had to leave to get back home to sort out the girls ready for Secondary school. Dan took him off for ultrasound, he was laid out on his bed, hot and asleep. I felt awful leaving but the girls needed me.

That evening Dan reported that the paracetamol had kicked in and Herbie was bright and cool and happy. The ultra sound was ‘unremarkable’ and nothing was a worry to the doctors. This was great news but it was agreed by all that this was GVHD rearing it’s ugly head again. This is annoying as Herb is in the lowest category to get it really, sibling matched donor, 10/10 match, same blood group so no changing of blood group, same gender donor!

Still, it was a relief that the ultrasound looked good and they upped the steroid again(we had just weaned that too!) to counteract the GVHD.
Once the temperature was gone he was ‘old Herb’ just a little blotchier!
image
Still blowing raspberries at the doctors (and some poor nurses!) but always happy to see the ward play specialists Grace & Sam and Juliet the hospital school teacher!
image
image
By the evening it was decided, in consultation with GOS, that if temps stayed away, culture were negative and GVHD under control he could stop the TAZ in the morning and could go home on Wednesday.

Day T+110
Wednesday arrived, the three others were all packed off to school sporting new uniforms and with much excitement and I headed to the JR again.
image
I swapped with Dan, who went straight off to do some work, and arrived in Room 25 (yes we are in that room again!) to find it full of doctors! Herbie was holding court! The doctor in charge said that the iv’s were to continue, which was not what we had thought was happening, and that we MIGHT go home today! Grrrrrrrrrrr
They also wanted a repeat ciclosporin level as it was only 50 on Monday and it should be between 100-150. Ciclosporin is one of the immune suppressants and if levels go too low it can cause GVHD. However the level was taken almost 24 hours after the last dose given which is probably why it was low! Annoyingly though they only told us they needed a level at 10am, so his 8am dose had been given! This meant staying until 6pm.

Luckily Juliet came twice to do science and maths with him which he loved and she commented on how well he had come on with his reading etc since January.

Working with Juliet
Working with Juliet

Herbie continues to be blotchy but thankfully it isn’t getting worse or too itchy. It’s not pleasant to look at but he’s in great spirits. More importantly…he’s upstairs asleep in his own bed! Yes we are finally home again. Now I’m not a gambling person but anyone placing bets on when the next stop at the local might be? Herbie is just like his dad, never takes the motorway when he can take the longer, windier and more complicated ‘scenic route’

Bloods
HB 11.5
Platelets 75 (annoyingly they drop with fevers)
WBC 3.5
Neutrophils 3.29
Lymphocytes 0.11 (dropped quite low again!)

GVHD
GVHD

image