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