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.