12 April 2012

One year on

With all the inevitability of the sinking of an unsinkable ship, Paige has now contracted an infection that is caused by - wait for it - too many antibiotics. Clostridium difficile (C.Diff from now on, because my typing is horrendous) is a bacteria that wreaks havoc on the gut; as if Paige's gut didn't have enough problems already. One year on from her diagnosis, Paige finds herself back at Piam Brown ward. But since it has been a while since our last blog, I'll start at the beginning.

We spent a lovely Easter weekend in the New Forest at a cabin at a holiday park. This was provided by Lennox Children's Cancer Fund, who organise respite breaks for families of cancer children. Since we are confined to the UK, a Staycation is our only option and the New Forest is a brilliant location, and a stone's throw from Southampton. We shared the weekend with friends, including Paige's BFF JoBo, with an afternoon/dinner on Saturday and lunch on Sunday. However, we noticed red marks on Paige's fingers on Friday, which we quickly ascertained were not chicken pox. Then we accidentally fed her something with dairy in it and, to cut a messy story short, she did not enjoy the rest of the weekend.

By Monday the red spots had started to spread and we took Paige to QA, where they suspected something called Hand, foot and mouth disease and sent us home with antibiotics. On Tuesday she was due for a Lumbar Puncture as part of her Long-Term maintenance regime, which is administered at Piam Brown. However, the doctors did not think she was well enough (neither did Lisa). She was very dehydrated, which we put down to the diarrhea (see above - I cut the story short, remember?). But there is a lot to be said for fresh eyes. Although we have been managing her dairy intolerance and gut problem for the last five months, Mary Morgan had not seen her this unwell ever (neither had the new Registar, Prithee). Also, we weighed her, and she has not put on any weight since diagnosis a year ago (9.1kg). Again, although we considered this an acceptable effect of the treatment, Mary was not happy.

They started Paige on IV fluids which, over the course of two days, added one kilo to her weight. They also ran a battery of tests, the complete list of which I will not go into, but included blood tests, urine and stool tests and a chest X-ray. But the upshot is that she has three problems: 

(1) she does indeed have hand, foot and mouth disease, which is common among infants and the least of our problems, but is does explain the red spots;

(2) she has the aforementioned C.Diff. Given that she has been on and off antibiotics several weeks, I guess that was almost inevitable;

(3) she is underweight; we spoke to a gut specialist, and a nutritionist, and she is going to have a feeding tube fitted this weekend. This is common among cancer children (nearly everyone we see has one) but we had managed to avoid it until now. Paige has not had a general problem with eating (or taking medication), just specific intolerances (dairy) so we were happy with her caloric intake. 

We have steeled ourselves for this, but were still dreading it. Lisa is sure that she will rip it out, realise the pain that causes, and then not touch it the second time. Or maybe the third. Who knows...she is such an independent little girl. And stubborn. (She get's that from her mother. And her father, actually.)

Anyway, the plan is that she will be fed a supplement overnight(s) which will increase her caloric intake - but we continue to feed her as usual. To be honest, at this stage, we would love her to put on weight and climb back onto the children's growth chart. She is already looking better for having the fluids (we got some smiles this afternoon). As Jo Walker (one of her Portsmouth doctors) said, she has wrinkles around her arms which show that she is underweight. If only she was a little chunkalunks like JoBo...

Piam Brown is at Southampton General, and Lisa is happy to be back there, partly to get some fresh opinions (without any disrespect for the amazing job that Louise, Jo and Wilf are doing at QA). Because of the C.Diff, she is in an isolation room (private room). This makes a big difference, because the ward on PB does not have beds for parents - we had spent many nights sleeping on a chair. Honestly, if we win the lottery, we will expand PB so that every patient gets their own room (and if you win, please do so as well...and if you are good friends with those teachers in America, put in a good word for PB!). Mary does not want us to leave until she starts getting better.

On another note, I took Sam to a Fireman Sam play today...he is addicted to that cartoon at the moment, perhaps partly because his name is Sam, but also because firemen are great to an (almost) 4 year-old. We bought him a fireman outfit three weeks ago and he has hardly taken it off. The play was very well done and Sam sat still for 90 minutes! He initially did not want to go today, but after he realised that he was not going to a Fireman Sam plane, but a Fireman Sam play, he was all for it. (I think the plane would have taken him away from Paigey - Sam is a great big brother.)

One year down, one(ish) to go.


  1. Goodness, one things after another...my heart sank when I read about the feeding tube, I know you were desperte to avoid that, but I guess if it's only for nighttime at least she can still eat "normally" during the day...? And hopefully it will help with putting weight. Much love to little Paigey-lou, Sam and you guys too xxx

  2. Our thoughts and prayers continue to be with little Paige.

    Love to you all,
    Tonya, Russell and Family