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Who hit the pause button? Come on own up, who did it?

 

Rhys’ transplant has been postponed due to the slight problem of him being neutropenic (in fact not having any neutrophils at the last count).

 

The bone marrow harvest and removal of two of his teeth can’t go ahead until he is no longer neutropenic.

 

It looks like everything is going to shift by two weeks so conditioning is now being targeted to start on the 14^th with the transplant on the 23^rd.

 

Of course this all depends on the little monkey’s body deciding its going to go along with things and recover in the couple of weeks.

 

We’ll know more details in the next couple of days and will post again once we’ve more information to pass on.

 

 

Rhys’ first post will be appearing soon. Stay tuned for that.

Best Laid Plans of Mice and Men

Well, everything has been going so well up to know with Rhys’ transplant. The donation was all set to tie in with the 9^th for Rhys to have his transplant. We were getting packed ready to go up to Bristol tomorrow in order to get settled in before bloods, radiotherapy test doses and the chat with Michelle.

Of course it was too good to be true.

Rhys had a bit of a temperature this morning. When we rechecked it using the ear thermometer it was 38.4º. Checking it under his arm was slightly cooler at 37.8º. We checked with the children’s ward at Yeovil who told us to bring him in because of the above 38 temperature. Tray stayed home in order to continue sorting out everything her and Rhys would need for their stay in Bristol.

Doctor Nicole was at the hospital when Rhys and I arrived. By now Rhys’ temperature was normal and we all agreed that we didn’t want him to stay in hospital. As a precaution it was decided that one of the doctors should check him over anyway.

Rhys was feeling pretty fine in himself, his ear was hurting a bit. The doctor checked him over and everything looked fine. However, just as a last test it was decided to get Rhys to do a urine sample and test that.

A bit of time passed between Rhys providing the sample and the doctor returning. It did cross my mind that it was taking longer than usual to test his wee but it was warm in the Rainbow suite and the pair of us dosed off on the settee.

When the doctor came back he told us that the test had been positive and that they have found traces of nitrides. Having consulted with Bristol Rhys was admitted to Yeovil to have 6 hourly antibiotics.

This means that the entire schedule for this week will get delayed, if not the entire transplant schedule. At best Rhys wont get discharged from Yeovil until late Monday, if not Tuesday.

So best laid plans and all that we’re not going anywhere fast.

At least we’ve got the big plasma TV to watch things on.

Thunderbirds are go!

Just had confirmation that Rhys’ transplant is going ahead as per schedule. His donor can donate to fit our timescales for which we are deeply grateful.

As of Monday 28^th April Rhys will be a resident of Bristol.

He will be admitted on the 1^st May but this is a form filling session and can come back out again.

On the Friday he will go into hospital and start the conditioning properly with the transplant the following Friday.

We’ve got a session planned with his consultant next Monday we’ll post more details about what is happening after that.

It is certainly looking good.

There’s a hole in my Rhys, dear Liza, dear Liza

Rhys’ neutrophil limbo dance has reached an all time low.

Today’s neutrophil count is 0. 

Yup, nothing, zero, nada, zilch… you get the point.

Platelets are refusing to go up as well. These are down to 34 despite him having had two platelet transfusions in as many weeks. 

At least the blood transfusion has helped push his red bloods above 10. 

White count is going down as well, 0.1 today.

Oh well, better plug that hole before it all dribbles out. Anyone seen that bale of straw I had a moment ago?.

Booked In

Dateline 15^th April 2008

 

Up before the crack of dawn for today’s trip to Bristol.

 

Yes, Virginia, there are two 5 o’clock in a day.

 

It was a lovely clear morning, a bit chilly with mist coming up of the fields but still a great day to be travelling.

 

Its amazing how, if you leave Yeovil at 6am, the journey up the A37 can be quite quick and easy. Took a little over one and a quarter hours today.

 

Having arrived Rhys was soon on a drip having a dose of platelets as his counts continue to do an impression of a dancer in a limbo competition, getting lower and lower. How low can you go.

 

As of yesterday haemoglobin was at 7.0, white blood count was 0.3, platelets 40 and neutrophils 0.1.

 

Today’s procedure was a lumbar puncture with intrathecal Cytarabine and steroids. The steroids being to help kill off any leukaemia cells that may still be hiding in the cerebral fluid, even though all of the recent lumbar punctures have been clear, and also to help reduce any swelling that might arise from the Cytarabine.

 

Fortunately the anaesthetist was in early to see Rhys as by mid morning he might have had to explain that the colour of his nails was not due to him wearing nail varnish, one of the standard questions on the paperwork they run through, but because he had been finger and hand painting.

 

Rhys’ eczema on his back has improved since last Friday, the scarring looks very much like that on his arms.

 

As his red blood counts are also low Rhys has to go into Yeovil hospital for a blood transfusion. It will be a reasonably long day for him again as he has to have three units of blood.

 

Chatted with Jamie, it would appear that I am not the only mad person who has applied for next years Flora London Marathon. Roll on October when I’ll find out if I’m in. If I am then it will make running the Great South Run a couple of weeks after all the more fun and a really good incentive to keep up the 10 mile runs all through the winter.

 

Rhys wasn’t long having his lumbar puncture, well under an hour between going down and being back on the ward.

 

Although he wasn’t hungry, a constant problem at the moment as he has no appetite, he did eat something as that is one of the requirements for being allowed to go home.

 

Before we left we discussed the next couple of weeks with Rhys’ consultant. He’s got chemotherapy the rest of this week with his mercaptopurine finishing next Tuesday. After that its just itraconazol, septrin and valaciclovir until we’ve completed the course and then back on the aciclovir.

 

We are waiting for the bone marrow donor to confirm that they will be able to donate in order to meet our timescales. We do know that they are able to donate and they are American, its just a case of agreeing when so that the logistics of them donating and getting it flown over to this country for Rhys’ transfusion to be sorted out.

 

Last post  I mentioned that we’d been told that neurofibromatosis was tied in with another type of cancer. We’ve found out a bit more.

The cancer is called juvenile myelomonocytic leukemia and is much rarer that Rhys’ ALL. Thank goodness that in his endeavours to be as unique as he can, he didn’t go for something really rare.

 

Photo shoot

11^th April

Another day in Bristol. Partly so Rhys can have his Cytarabine and see the dietitian but also so that he can see the consultant dermatologist.

The day turned into a full day rather than the half day session as Rhys’ platelet count had dropped from 100 to 47 over a two day period. As we we’re in Wales for the weekend and past history has shown that give him a chance to be even slightly unwell and we end up paying a visit to the hospital, either for him to be admitted with a high temperature or at 3am in order to get a bottle of Calpol in order to try to reduce his temperature before we have to have him admitted.

Rhys has had some spots on his forearms for a little while this year, certainly a little before he relapsed. These got itchy and he started scratching them in his sleep. This ended up with him having some really deep wounds in his arms.

A few weeks ago we saw a dermatologist who introduced us to one of the specialist eczema nurses who organized some special bandages and creams for Rhys. We’ve been having great fun putting on the bandages as they are impregnated with lots of moisturising cream and so you can imagine just how messy this can get.

When we saw the dermatologist again Rhys’ arms had healed so that the wounds are now pretty much scar tissue which should continue to heal and fade in time.

The general opinion is that Rhys has had discoed eczema although that is not definite as no pictures were taken of his arms before he started scratching them or we were putting the bandages on them.

The main consultant dermatologist came in to have a look and decided that it would be useful if some pictures were taken of his arms so that there is something to compare when they see him next and in case they identify exactly what this problem was. In which case pictures of his arms may get used in medical text books some time in the future, so if you happen to be reading a medical book about skin problems some time in the future and see an arm against a blue paper background with red circular scars on it then it just might be Rhys’. From the way that he posed for the photographer he has a great future in catalogue modelling.

One interesting fact that we did learn from the dermatologist was that as we all know Rhys can’t do anything easy or expected.

The consultant dermatologist when he came in started questioning us about Rhys’ history. As he was doing this he glanced at Tray and said to her that she had Neurofibromatosis (NF). We said so has Rhys. At this point he asked about Rhys’ cancer diagnosis which is Acute Lymphoblastic Leukaemia, he then said that with NF the usually associated cancer is something called JNML, whatever that is.

Still no confirmation that the bone marrow donor will be able to spare time to provide their donation. Keeping fingers crossed though.

Long Day

Tuesday 8^th April. Set off from Yeovil on a frosty but not unpleasant morning at 8am for another day of treatment on Oncology Daybeds at Bristol Children’s Hospital.

The plan was to arrive in the hospital for 10am.

After a great drive up, the second in our new car, we arrived on the outskirts of Bristol at 9am. From here things ground to a halt. Traffic was crawling into the city centre along the route we had to take. Eventually after nearly 45 minutes of 1^st gear the traffic began to thin and we were able to get into 2^nd and then 3^rd and 4^th. Having negotiated the traffic in the Broadmead shopping area we arrived at the hospital a couple of minutes after 10.

Rhys and Tray went into the hospital leaving me to park the car. If you’ve ever tried to park at the children’s hospital you’ll know that it can be frustrating as the hospital doesn’t have as much parking spaces as it used to and everybody tries to use the same car parks. However, we know of an extra car park that the hospital has which so far has always had at least one space when we’ve arrived. Today it had 5 spaces. A luxury that left me trying to decide which space to use.

Arriving at daybeds Tray informed me that Rhys’ chemotherapy drugs wouldn’t be ready until 1 o’clock, two and a half hours of sitting around.

Tray took the opportunity to nip into Broadmead to pick up a book she had ordered for my birthday. A chat with the play specialist and a game of Yu-Gi-Oh between Rhys and myself later and she was back with Phil and Eileen, who she had bumped into in town.

By 1pm Rhys was attached to a drip having some of the 4 hours hydration that accompanies the Cyclophosphide that he has through the drip. Half past one saw the Cyclophosphide start with it completed by 2pm. Then it was back onto the remaining three and a half hours of hydration. A quick dose of Cytarabine through his line and we will be able to go home.

Finally got out of the hospital at 6pm and got home via the chip shop at 8pm. A long day again.

The Rhys Plan Diet

Having put on quite a bit of weight during the steroids, Rhys is now losing weight. At one point he weighed 38 kilograms. Today he is down to 35 kilograms which worries the doctors. On Friday when we are back up for more chemotherapy and to see the dermatologist about his arms and back, he’s managed to rub this raw where the shingles rash was, we have an appointment to see a dietician and work out how to get him to eat so that he doesn’t lose too much more weight as he needs to keep his strength up to cope with his treatment.

He’s been off his food for the last week or so and so its not surprising that he’s losing weight.

I must say I wouldn’t recommend chemotherapy as a way to lose weight.

Bone Marrow Transplant update

Spoke to the doctor about the plan for the transplant today. The latest plan is for Rhys to come up to Bristol on the 28^th April to have the radiotherapy test does and blood samples taken to check his counts in order that they can do a bone marrow harvest and remove the two teeth that he has to have out on the 29^th.

Not sure what the going rate is for teeth when they get taken out in hospital. The tooth fairy normally leaves £2 a tooth at home. Wonder if its more expensive in hospital.

The CT Scan is planned for the 1^st May as Thursdays are when the radiographers have access to the equipment.

On the 2^nd May we will be back in Bristol to start the conditioning part of the transplant with the actual transplant happening a week later on the 9^th.

So from the 28^th April onwards Rhys and Tray will be residing at Sam’s House for the foreseeable future.

Of course all of this is dependent on a number of factors; the donor being available to provide the donation, Rhys being well enough, the number 6 bus stopping outside the hospital 9:43 am on the day of the transplant and there being a bed available in the BMT unit for him.

Alright maybe not the bit about the bus but the rest of them could cause the transplant to be delayed.

What with trips to see people, people visiting, hospital visits and a pre-bone marrow transplant bowling party for Rhys and some friends its going to be a busy few weeks.

Worth it though.

Provisional Diary Dates

All of the following are planned for Bristol.

28^th April – Bloods and radiotherapy test doses

29^th April – Bone marrow harvest and extraction of two teeth

1^st May – CT Scan

2^nd May – Start of conditioning

9^th May – Bone Marrow Transplant

Getting started

Welcome to Rhys’ treatment blog as written by me his dad. As there are so many people interested in how his treatment is progressing I’m going to try to keep everyone with internet access up-to-date here. Helps me to keep things straight and also to let people know how he’s doing if we’re not seen for a few days or weeks at a time. I’ll aim to post something new whether short or long at least once a week and in between as we have new information to pass on.

Rhys has Acute Lymphoblastic Leukaemia and is currently having treatment to prepare him for a bone marrow transplant at Bristol Children’s Hospital. I’ll post more details of how we got to this point in future posts.

In the meantime we’ve just completed the bone marrow work up and so for those of you who know Rhys this is where were are and the current plans for the future. Apologies for the length of the first post.

Dental Check

Rhys had his dental check on Monday morning. Impressive set up they have in the dental hospital. If you’ve ever watched some of the wildlife films where Meer cats pop up, take a look around and then disappear (or for a more accurate representation have seen the Dilbert character parodying this) then you’ll understand what its like, lots of little cubicles in an open plan area.

They took a couple of x-rays, two of the small, in the mouth x-ray film type that you get when you visit your own dentist. They then took this massive x-ray of the whole jaw where you stand with your chin resting on this platform, a bit like the machine the optician uses to check the back of your eyes, and the x-ray unit rotates around your entire head. We had to stay out of the room when they did this.

The result of the x-rays were that Rhys has to have two upper teeth out because there are small gaps above the teeth where some of his teeth are being reabsorbed. This has the potential to be a source of infection at a later date. Removal of the teeth will be done under general anaesthetic.

Echocardiogram/Electrocardiogram

Both the echo and ECG were ok. They couldn’t get all the views they need with the echo but this wasn’t a big issue. They did confirm that the tip of his Hickman line was clear and so isn’t currently a source of potential infection.

Respiratory Function Test

Again this was ok. They couldn’t complete all the tests because some required a specific lung capacity and because of his age and size Rhys’ lungs are smaller that.

TBI Planning

Spoke with the doctor looking after Rhys’ radiotherapy so that we understood what was planned and also the side effects of the radiotherapy. She had intended that Rhys have test doses of radiotherapy once they had done all the measurements they needed to do. However, when we got into the oncology centre the plan had changed and they just did the measurements. They will be doing the test doses closer to the time of the transplant.

Rhys does seem to be quite unique. Having relapsed once and had cranial radiotherapy, his relapsing a second time and having to have full body radiotherapy puts him into a very small group of cases (probably about a handful), however, with his Neurofibromatosis this puts him into an even smaller group which for Bristol’s experience is just him. Not sure if the slightly bigger group was UK or worldwide!!

Bone Marrow Transplant

The 11th April provisional date for his transplant has changed. Its now more likely to be early to mid May. This is all subject to how quickly they can complete the tests on the donors and get them organised to provide the donation. We don’t know whether they are male or female but we do know that all 3 of the donors that have been identified are non-UK based. The one they’ve had the blood samples back from is an American.

Bone Marrow Harvest

Prior to Rhys’ transplant they will be harvesting some of his bone marrow in case he rejects the donor marrow and they have to put his own back into him. Not the ideal situation to be in so lets pray that his body doesn’t reject the transplant.

Sam’s House

We stayed at Sam’s House which will be our base for the week before the transplant (the conditioning week), during the time Rhys is in hospital having and following the transplant and then when he’s released back into the outside world but before he comes back home. This is may be something in the order of 3 months, could be longer. Sam’s House is nice. Its closer to the children’s hospital that CLIC House. All of the rooms are en-suite, it has its own laundry facilities, there are a number of kitchen areas that are shared between 2 or 3 of the rooms. On the second floor there are 3 kitchens and something similar on the ground floor.

There is an outdoor play area as well as a playroom, with pool table. For the 9 to 12 year old there is also a room with an air hockey game, PS2 and stereo.

Over the years we’ve stayed at CLIC House and love it. Its been a real help having somewhere to stay when we’ve been in Bristol. CLIC House is definitely a home from home. The two places couldn’t be more different though.

BMT Unit

We have reached the dubious achievement of having been on every floor at the children’s hospital. Tray has of course out done Rhys and myself in this regard as she has been on the roof and hung off the side of the building during her charity abseil. I don’t see Rhys or myself attempting to keep up with her in this regard.

Can’t see Rhys being too upset about being in there as they have TV, Playstation 2, Broadband access and telephones in each of the rooms. They also have food freshly prepared on the unit, providing someone is there to do it, whenever the patients want it. Hopefully pizza and curry will not become the regular breakfast of choice!

Visiting being restricted to Tray and myself plus only 2 others, we’re hoping for a room with a decent view so that anyone else coming down can wave to him. Being the lucky so and so he is Rhys has managed to get an additional visitor as his Great Aunt Anne being part of the patient visiting team at the hospital counts as a member of staff and so can visit him in that capacity.

Other

Its been confirmed that the last 3 lumbar punctures were clear and also that the MRD result from his bone marrow sample taken last Friday was negative, i.e. the number of leukaemia cells that could be detected is below the minimum resolution of the test. This is the position that we wanted to be in at this point in the treatment so this is good.

Rhys’ hair has been falling out because of the treatment and so a severe haircut has been the order of the day. Both of us have had number 1 clipper haircuts. Since its cold at the moment Rhys has now got some new hats to keep his head warm. He loves them. They are called Buffs and are basically a tube of material that can be made into various headwear. I have to keep a close eye on mine as he’s eyeing them too.

Rhys also has a loose thumb joint as it appears he managed to dislocate it twice of Monday. Once at lunchtime and once in the evening. On both occasions the thumb has managed to pop back into its joint.

Rhys’ shingles are fading. We’ve got to keep an eye on it in case it flairs up again. Hopefully the antibiotics have knocked this on the head.

We’ve been given creams and bandages to put on his arms to help with what they think is ring eczema and which he had scratched horribly. They do seem to be helping and once the bandages are not sticking to them so much it should be even better.

Future Treatment Plan

From Tuesday Rhys has to go up to Bristol for chemotherapy once a week. Lots of IV fliuds plus batches of chemo.

After each Tuesday there are 4 days of chemo back in Yeovil. These are just 5 minute jobs so are quick and easy.

His teeth are going to be taken out at the same time as they do the bone marrow harvest which will be close to the transplant time.

He’ll be having the radiotherapy test does close to the transplant time as well.

At some point he had to go and see a consultant dermatogist in Bristol for another look at the eczema to confirm that this is what it actually was.

If everything goes to plan his transplant will be early/mid May. If not then after the immediate 4 weeks of consolidation treatment then he’ll go onto maintenace treatment until the transplant.