We're Home

Finally 15 days later Paige has finally been discharged, I was beginning to think that she felt so safe and comfortable in the care of the Piam Brown Ward and that she didn't want to leave!
Firstly we can all breathe a huge sigh of relief as her flow cytometry results confirmed that Paige is still in remission so her slow recovery in terms of blood count is due to the many viruses that she has caught over the last couple of weeks. The weekend was absolute torture given that her initial results on Friday were inconclusive.
We were due to be discharged from Piam Brown on Monday and transferred to QA however Paige spent the day throwing up and there was no way she would be discharged. We were not sure about the source of her vomiting so the concentration of her feed was decreased, unfortunately she woke up at midnight hurling and had to be taken off the feed altogether. Last night she tolerated 12 hours of feed at a rate of 20mls/hr and by midday was still well.
Mary was quite pleased with her progress, especially since she is up to 10kgs and her cheeks are filling out nicely again. So given that Mary was now certain that Paige is still in remission, and that her bone marrow was regenerating albeit slowly, and that she was looking so well, Mary agreed that we could be sent home. Given also that both Russell and I have been independently signed off on the use of the feeding tube and pump, we will be trained at home tomorrow and did not have to be transferred to QA!!!!!

Paige had been caught in a vicious cycle of having loose stools combined with a restrictive diet and intensive chemotherapy over the last 3-4 months, so it's certainly not a surprise that she had deteriorated so fast so quickly. Fate however stepped in an took Paige back to the Regional center and her lead consultant Mary Morgan who continues to be our hero. Mary leaves no stone unturned and was adamant that Paige would not be discharged until she was back to her normal bright, happy self. I think that initially the Registrar assigned to us was a bit confused by the requirements of Paige's discharge (but I don't think that anyone really questions Mary's decisions). Mary authorized a battery of tests that included, blood, stool, mucous, line site, chest x ray, echo and ECG. She established a base line for Paige, which included levels of nutrients, then ruled out issues as she went along. She's also very clever and resourceful and co-opted the required skills of the people around her, namely a pediatric dietician, a gastroenterologist and dermatologists (to have a second opinion on the red spot/sores) She even did a bone marrow and flow cytometry to ensure that Paige has not relapsed, and most of all give us the necessary reassurances that we needed that was beyond any doubt.
Paige is looking well and smiling again, but of course it's week 4 again and she had her dose of chemotherapy Vincristine and demon Dex started yesterday for 5 days!
Anyway we are finally beginning to see a light at the end of the tunnel and hoping that Paige's tummy continues to heal and she can put on some weight.
Once again we are quite in awe of the amazing team on the Piam Brown ward that is led by Leigh Shaw, the people that looked after us were especially sensitive to the needs of both Paige and I, and went that extra mile to make sure that Paige was on a definite road to recovery. The particular people that stood out for me are Leigh, Karen, Liz, other Liz and Mandy - our deepest appreciation goes out to all of you for taking such good care of our precious Paige.

Good night to all

Slow progress

Coming up to two weeks now that Paige has been back at Piam Brown and progress seems to be slower than a McLaren pit stop. But progress is being made: today's weight was 9.8kg and the red sores on her hands and feet are healing nicely. We are hoping that she will be discharged from PB tomorrow, although she will go from there straight to QA, in order for us to be trained on use of the feeding pump.

But didn't they install the tube last week?

Yes. We have been giving her formula at night, via the feeding tube, over the last week. This will supplement the food and drink she takes in during the day, but should also stimulate her appetite (which it has). The idea is to ensure that she gets the calories she needs to gain weight (and get healthy). This is different to the fluids she was on before, which helped with hydration, but not much with nutrition.

The bottle of formula is hooked up to a small pump which administers the liquid at a set rate over 12 hours. She started at 20ml per hour and are now up to 40ml/hr, or nearly 1/2 a litre overnight. She also started with quite a weak formula, just to get her gut accustomed to the whole process. Last night the concentration was increased (I think we want to get to 1 calorie per ml) but she threw up everything at 0600. (She was not impressed.) So we make have to take it more slowly.

The feeding tube will remain in place indefinitely (or, as far as we are concerned, until we can get her up to a good weight and eating well) so Lisa and I will be given a pump to take home and need to learn how to use it. (No problemo: if we can work an iPad, smartphone and the new dishwasher, a simple pump should be a breeze. And it is, although, of course, it's not just the pump we need to learn, but the whole process.)

It starts with a test to ensure that the tube is actually in her stomach (and not, say, her lungs), which involves sucking up some stomach contents and testing the PH on a coloured strip (takes me right back to 3rd from Chemistry). Yuck! No, it's not very pleasant, and I'm sorry to had to hear it this way....well, you shouldn't be eating your breakfast when you read our blog.

The pump is straightforward, but the one that QA will give us to take home is a different model, they want Paige to spend a couple of nights there to make sure we know what we are doing. 

Anyway, the first picture above was taken this morning. She perked up at about 1100, just before the doctor came: she let her listen to her chest, showed her the sores on her hands, opened her mouth for an inspection and then pulled up her shirt for a look at Mr. Wiggly. Amazing! (Normally she kicks and screams and squirms and cries.) 

So progress is definitely being made. They took some bone marrow on Friday, but the results of Flow Cytometry were not available then. Mary will analyse them and come and see us tomorrow. Fingers crossed.

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.

Demon Dex - Complete

I guess it would be fair to say that it is impossible to have any energy left over at the end of a day, or in this instance 5 days of the Demon dex!!!

Paige was discharged on Tuesday last week and came home by early evening. Sam was thrilled that his sister was home and she seemed quite pleased to be at home too :-) She continued to have both oral and IV anti-biotics that would be administered by me on Tuesday and Wednesday.
On Wednesday I spent the entire day either holding Paige or offering her something to eat or drink, by the end of the day we were both frazzled. She was so out of sorts that a visit from her buddy Jobo didn't even cheer her up, in fact she didn't even go near him! Sam on the other hand had been an absolute star trying to be quiet when she was asleep or entertain her when she was crying. He of course had to spend the day at home due the 48 hour rule after being sick. His good behavior earned him another Fireman Sam fire station, that he was thrilled to bits about!
By Thursday I was weary but still managing. I had back up because Russell stayed at home to help with Paige and Sam. She woke up in a good mood but unfortunately it didn't last very long :-( She's still only eating bits during the day and whilst her poo isn't as messy as it used to be it's still loose and frequent and she demands to be changed within seconds of it touching her skin.
Friday, finally the last day was here! by 9.00am Paige had alreday tried 5 options for breakfast, had 4 options for a drink and bloods were done by the community nurse. Her mood had worsened considerably and I had resigned myself to holding her for the entire day. By this time she had managed to swallow the skin off the thumb that she sucks on and it was pretty swollen. Of course this would require a trip to QA for anti-biotics at the very least. Her blood results were in by 11.30am and Louise called with the good news that her hemoglobin was coming up but she would still like to see Paige's thumb. We left QA after an uneventful but very pleasant trip armed with oral anti-biotics.
Saturday was much of the same behavior, eating, drinking being grumpy and many poos!
By Sunday we celebrated Mother Day and Paige's improved mood. She's still only eating bits and pieces but has manged to put on some weight and is walking around the house quite happily. She wore her Nemo costume for the entire day and even enjoyed a brief stint in the sun!

Hopefully her neutrophils will continue to improve and increase this week and she can begin her oral chemo. We're off to QA again tomorrow for clinic. She's still coughing quite a bit despite a specific respiratory anti-biotic which is a bit worrying......but she has alreday had several chest X rays and the oncology consultants now know her very well and are quite thorough with her so that usually puts my mind at ease despite her hacking cough