Sunday, 31 July 2011


Harry was a little unsettled last night, hoping he's not ailing but when I got up at 1.30am he had pulled his tube out YES OUT.
This is getting a little boring now Harry. It was done twice whilst we were in Manchester and home for 2 days and its out again.
I tried to give him his meds straight from the syringes and after some (and I have to say pretty over the top) balking he sicked most of them back up so yes, off to hospital again to have it re-passed.

One hour later and it was safely back in, meds down and top up feed done and then I caught him trying to do it again, Har har Harry, too slow for mamma and now it has extra tape on. Pull it off if you dare lol.

I must say hiya to a new friend I met in Manchester, Cameron and his family. They were in the same ward when we first landed, but managed to go home for the weekend before coming back for his next chemo. I think Harry stole their hearts, but would love to get William and their little one Luca together. They are the same age and full of the same mischief. Mega cute and funny and certainly made my day pass by a lot brighter. All the kids and their families are soo lovely, one little boy Rory became a big brother as his mum went into labour and went across to the maternity unit one night. She was back the next day as if nothing had happened along with baby Hugh in tow.
 I pray for Haleema and her family as they awaited her diagnosis as I left. They have already sent one little boy to the angels due to cancer, life could not be possibly so shit that it could stike again and also for the family of the baby who was clinging to life. I have no idea if it became another angel baby but I was touched that some of their family came to see Harry. They said his happiness made them feel better, and they stopped by the next day with others saying' this is Harry who we told you about'
It is so nice that we can share some of Harry, he certainly seems to steal the hearts of anyone who meets him, but hands off cancer he's mine!!!!

Saturday, 30 July 2011

Just when things couldnt get any worse

Well, its been a long long long 2 weeks..... a shortened version if I can.

2 weeks ago, I noticed Harry seemed to be a little off and wouldn't feed properly and at tea time I thought I'd check his temp (one of the tasks drummed into me for chemo patients) and it was 38.5 C. Protocol states that anything over 38 requires urgent admission for antibiotics whilst they check him out. I frowned and uttered ffs Harry and wondered if my thermometer was faulty. No, my temp was normal. I checkd it again, both ears and it was still 38.5. Saturday teatime, great.

Rang Manchester and they advised me to go straight to Lancaster childrens ward to be checked over. Harry's temp was now 39. They took bloods, checked him over and started him on IV antibiotics.

He remained poorly for next 2 days with his temp only going down following paracetemol until they got his blodd culture results back. He had septicaemia, his Hickman line showing to be the source and we were packed up and rushed off to Manchester. There followed 10 days of specific IV anti-biotics and we clung on to the hope that they would work and his line be saved. If not he would need a 2 week stay whilst they took it out and a new one put in with anti-biotics in between.

He gradually got better, his temperature stopped going up and we finally got the news we were waiting for, his blood had stopped growing bugs. I thank you Louis Pasteur, your Nobel Prize was definitely well deserved.

We stayed at Manchester and they gave him his 5th dose of chemo and then whoosh down to Birmingham we went. He will have oral anti-biotics for another 7 days.

Anyway, Friday morning dawned and Harry went under anaesthetic to see if there was any improvement, and way hey they were able to start laser on his larger tumors. They were really pleased with his progress.His tumors are till responding to the chemo, although they havent ruled out he may need to have his 6 doses extended. We will wait and see.

He was spectacularly sick when he came round but we did eventually make it home. I missed my other little ones like crazy and being apart from them for such a long time was a killer.

It was a truly awful 2 weeks and my tale seems to make light of it, and maybe I was a bit blase about the chemo has Harry had been doing so well up to that point. To see your baby so ill is horrid horrid horrid and 2 weeks later he is playing laughing and now rolling over effortlessly makes testament to modern medicine. I shall never take his chemo for granted again and hope to God he remains well forever. Bloody BRB

Friday, 15 July 2011

A week full of hospital, nurse and doc appointments and not all for me. My sis is still poorly, still yellow and now has visual evidence that she has a gall stone. She awaits a phone appt from the doc hopefully to confirm what the one and only sonographer said. She is an amazing multi tasker, she did my scan when we thought Harry had stopped moving the day before he was born and now done my sisters liver scan. NHS cut backs probably. Fing crossed hun xx

Harry, despite his cuteness and smiley giggly feet chewing moments has failed to put weight on. He has infact dropped a touch, I and the Health Visitor were a little surprised as I thought his cheeks were a little chubbier. It will probably have something to do with him pulling his feeding tube out for a record 4 times this week. I am awaiting the arrival of the nurse to come and put it back in. Straight jacket has been ordered.

Sunday, 10 July 2011

Slightly out of date pic of my little ones

This was taken before Harry was diagnosed but getting them all to sit still long enough for a pic is impossible. I will upload some more pics soon.
well my sis is still poorly. She is still yellow and itchy, hopefully she will get some answers on Tuesday if her blood results are back. I can't go with her this time, it clashes with Harry's line flush grr. Am sure it will be ok tho.

Matthew was at the hosp on Friday, a while ago our GP referred him for blood tests as he was very pale and tired, his bloods turned out ok, he's just going to be a pale person I think, but they did find a heart murmur.

Anyway, I'd completely forgot about him needing a follow up appointment, so was a little confused when the hospital rang and asked if I was Matthew's mum. I said you mean Harry.. no we have Matthew on our records. They had a mega long waiting list for the cardiologist. You're not kidding, we've been waiting since November for this appointment so hence I'd forgotton.

We went and Matthew was uber good. He had an ECG and and Echo. The cardiologist was trying to explain in kiddy terms what she was looking at, so when she put the doppler thing on you could see his heart unbelievably clearly. This is like a little house she said with 2 upstairs rooms and 2 big downstairs rooms.... Matthew blew her out of the water and said 'thats silly, thats my heart and the old blood goes into the top, moves down into the bottom and then its pumped out again'.   She was impressed, so was I. Matthew has been learning about things like skeletons and what keeps you alive at school. Since when was biology on infant school curriculum?

Matthew's heart murmur is low grade and classed as an innocent murmur. He will always have to state it on medicals etc but will not affect him. It will only ever be heard if he's ill or has a temperature. Great news. We like good news.

Thursday, 7 July 2011

A pretty non-eventful week in our house. Harry remains quite well despite developping a cough. Hope it doesnt turn into anything more nasty. He still smiles and gurgles away and has rolled over for the first time too.

I was asked by a nosey parker looking into the pram yesterday 'ooh he's a new one' errr no he is 6m old now. The look of shock was unmistakeable. I have all the centile recordings that say hE IS SMALL AND UNDERWEIGHT FOR A BABY OF HIS AGE but he cannot grow and tolerate nasty toxic chemo drugs at the same time.

The other question we get is ... ooh was he prem is that why he is still on oxygen.... no that is a nasal gastric feeding tube.

Gonna stick a note on his pram... I Have cancer, I am small because of chemo and I need extra nutrition through this tube because I am small..

ANyway, enough of our troubles. My poor smaller big sister is poorly. She has jaundice and is sick. Looking like she may need her gall bladder taking out and its horrid that I can't do anything for her other than take her to the docs and entertain her with my kiddies. Please get well soon, you are my rock but if I can repay some favours anyway I will xx Love you sis xx

Sunday, 3 July 2011

I did write a nice long update, but blogger kept crashing and I kept getting pissed off so I turned it off.

So to cut a long story short, Harry had chemo on Tues, it all ran smoothly until they did his last set of obs and his heart rate and blood pressure kept messing about. The doc checked him and said we could go home yay but to keep an eye on him.. could be a sign he's sickening for something. So that made us effing late but am beginning to not care about waiting now, we were home and thats all that matters.

He's not come down with anything... yet. He has , though pulled his feeding tube out again. So yes, Saturday teatime we had to go to the hospital to have it put back in. I just love hospitals, Harry obviously needed his fix of hospital smell and nurses. Keep your hands off Harry.