A Normal Week

Sorry I haven't written much but it has been a very non eventful week. Holly is feeling great and eating really well.

She had a fun day on Thursday last week as she was going to Megan's for sleepover part 2. They went bowling during the day and were then had to be told to go to sleep when they were still up at 1am! She has had a ball, as you can see from her picture. They then went shopping by themselves on Friday and, as usual, Holly managed to spend every penny given to her. She reminds me of the film Brewsters Millions (sorry if anyone is too young to remember that!)

She has also been in our local paper once again. I had written a letter to them to nominate Holly for the Child of Courage award in the Community Awards and thought no more about it. Next thing I know she is on the front of the paper and my letter is printed in an article inside. This was done to publicise the awards. I must admit to it being shamelessly soppy, and I really didn't expect it to by printed in the paper so felt somewhat embarrassed. However I have had nothing but positive comments, and Holly is quite pleased to be in the news yet again.

This week will see the build up to Holly starting her new secondary school on Friday. She is very excited and not at all nervous. I am sure I will be running around getting the last few essential items all week. We are not in Addenbrookes at all this week (as far as we know!) so heres hoping for a peaceful run up to Friday.

MRI

Today was Holly's MRI scan followed by a CT scan in radiotherapy.

She has been feeling fine since Friday and had her promised sleepover with Megan on Sunday night. They stayed up very late (not sure exactly until when, but we think about 2am!). They watched dvds and ate copious amounts of rubbish. The floor was littered with space ship sweets the next morning! They seemed to have a fun day and Holly is going to stay with Megan tomorrow night. It is lovely that she is able to do this and is well enough for it to be no problem. I have noticed though, that a tired Holly plus an audience, equals a little madam. I am assured that they are all like it at this age. I can't wait for the teenage years!

Holly's MRI scan went smoothly today. I can't begin to explain how noisy this scan is. You need earplugs in and it is still horrendously loud. Yet Holly fell asleep. Maybe thats what I need to do at home? We don't have any results yet and I don't expect to hear much. They are doing these scans as planning for radiotherapy and it isn't very long since her last scan.

She then had her CT scan. This is the scan where they get her positioned correctly for all her radiotherapy. Once lined up they drew 3 points on her which were then tattoed. They are only tiny pin pricks but will be there forever, fading over time. These will be used to line her in place each time she goes. She was quite impressed to be tattooed at 11 years old. It made me feel quite sad. It will be a permanent reminder of everything she has been through.

I must say a huge thank you to my wonderful mum for looking after Harry and Izzy so well while I have been up and down to Cambridge these last few weeks. She has made sure that they haven't really noticed that Mummy has been away so much. I wouldn't have been able to spend all this time looking after Holly without her help.

A Rough Day

Holly's bone marrow aspirate went well. She was initially very apprehensive about being put to sleep again but it was remarkably calm. I was very proud how well she handled it and we were both very brave!
We left Addenbrookes about 1.15pm but by the time we got home Holly was shaking violently and her temperature was climbing. In the space of 20mins it had gone from37.8 to 39 degrees. Anything over 38degress is regarded as a fever and needs checking out. After calling Addenbrookes back it was decided that I needed to take Holly to Lister A&E for observation.

Holly was not impressed, but we had to go. They checked her out and there were no signs of any problems. They thought it was probably an adverse reaction to the general anaesthetic and a long car journey home in the warm that had caused the temp rise. They decided to observe for a while and do some bloods. We were then able to go home as she was not neutropenic and the hospital would call us back if we needed to go back in. Her temp had started to drop by itself by this point so I was quite happy with this. By the time we were home her temp was normal and has, thankfully, remained this way since. Our lovely community nurse came by this morning and re-checked her bloods and all was fine. Her white counts had risen yesterday which may have indicated an infection, but her body seems to have fought it off by itself. She is feeling fine, eating fine and her temp is ok so I am quite confident that it was just a blip from the GA.

She is spending the night with Dad and Kirsty (as she is no longer having NG feeds this is much easier) so I have enjoyed a peaceful night with a glass of wine and a marathon watching of 3 episopes of House. It is amazing what is boring to some is absolute bliss for me.

Next week is quieter (thank god). Holly has her MRI and a CT scan for radiology on Wednesday. This should be it to be ready for the radiotherapy. I am thankful this week is over but am so proud of the way Holly has dealt with it all.

Nose Tube Gone

Holly wanted me to update to let you all know that the dreaded nose tube is no more. The dietician agreed with me that as she has put on 2 kilos in 2 weeks (!) she was obviously eating enough. It is lovely to see her pretty face properly again.

We had a good check up on Tuesday and Holly's hearing test was fine. The chemo hasn't caused any deterioration which is great. We also met the consultant radiologist who went through everything and answered all of Holly's questions. Holly will be starting 14days of radiotherapy on 14Sept at a very low dose.
Today was the MIBG scan which Holly took in her stride (as usual). As we were hanging around in day unit we got the opportunity to go and have a look at the radiotherapy department and see the machines. Holly seems remarkably unphased about this new chapter. She just wanted to know if she could have a picture on the machine to put on the blog when it all starts.

I get a day off from Addenbrookes tomorrow as Kirsty is taking Holly for her follow up scan. I am looking forward to spending the day with Izzy and Harry (and the plumber!). We are back in Addenbrookes again on Friday for Holly's bone marrow aspirate. She has decided that she doesn't like being put to sleep now but she will try and be brave. I have also decided to try and be brave...

Strawberry Picking

Holly is doing really well. She is eating brilliantly and is keeping me on my toes as she is constantly hungry. I am hoping that this will mean that the NG tube can come out very soon. Holly is desperate to get rid of it in time to start school, even if this means that she will need to take her meds orally.

We have a very busy week this week and are in Addenbrookes every day except today. Holly has to have a hearing test, MIBG scans and a bone marrow aspirate this week. Next week is an MRI scan. The results of all these are needed before radiotherapy can start.

We decided to take advantage of our only "free" day with a strawberry picking afternoon. The little ones had great fun and Holly couldn't help but be buoyed by their enthusiasm. The strawberries were very few and far between but we had much better luck with the raspberries. Holly filled her basket and has now washed them ready for eating. She is, however, more interested in her chocolate crispy cakes!

I am hoping that she is getting ready for bed now. My little night owl was not impressed when I informed her that it was an early night tonight as we have to leave early tomorrow. Please keep Holly in your thoughts and prayers for good results from all her tests.

Becoming Independant!

Holly has had a good week since my last post. The blood counts on Monday were good and we haven't had to make any trips to Lister.
We have had a quiet week as next week is pretty packed. We are in Addenbrookes on Tuesday for our clinic appointment, back again on Wednesday for an injection and a scan and then back on Thursday for a follow up scan. We will have quite a few tests over the next few weeks in readiness for the radiotherapy.

Holly has turned into a teenager. She is watching tv until quite late and then is a total nightmare to get up in the morning. She surfaces about 10.30 (if I'm lucky) and then is ready for her fry-up! Her eating has come on so much in the last week that I am confident we will be stopping the nose tube feeding very soon. Hopefully I can see the dietician at clinic next week and we can decide it isn't needed. I know Holly will be very glad to see the back of it. We have also cut down on the number of meds she is having.
The late nights are going to become earlier nights as we head towards September in anticipation of school. She is expected to be in school from around 8.15am. Looking at the time she sleeps she will need to be in bed at about 6pm!
One of Holly's teachers from her new school is coming to meet us on Friday to have a chat and answer any questions that we might have. They are really positive and I am sure they will support Holly throughout the transition into secondary school.

Going off in a totally different direction, Izzy has now been out of nappies for 2 weeks! I kept putting off doing it because we were in and out of hospital so much. She did it in a day and with only 2 accidents. My main problem now is getting to the potty before Harry as he has a fascination with splashing it all over the place. He is very pleased with himself!

Holly has decided that as she is nearly 12 (!!!!!) I should be giving her some independance. This week she asked if she could walk to the farm shop (5mins round the corner, no main roads) with Sophie from next door (also 12). I agreed with some trepidation. It turned out that the farm shop was shut so they went to the Tesco Express (round the other corner and across a main road). Luckily I found this out after they came back safely.
The next request was to go shopping to Brookfield with Sophie the next day. Sophie's mum would drop them and then collect them after an hour. I said yes, as long as she took her mobile. This was followed by a mass debate as to how much money she could take. She wanted £50!!!!! No way.
The shopping trip went fine. I called her on my way out and she was having fun. I did, however, drive past where she was just to make sure all was ok (she doesn't know this though). It was hard to let her go, I don't know if it would be so tough if she wasn't poorly. Probably would be. We have fought so hard over the last 6 months that I don't want anything to happen to her. On the other hand its wonderful that she is well enough to go and do normal teenage things, and I don't want to stifle that. Being a mum can be tough...

A Normal Week

This week has been good. As it is the school holidays Holly has been "normal" by being at home with us. That has felt good.

We saw Amos in Addenbrookes on Tuesday, all is going well after the stem cell transplant and he is very happy with Hollys numbers. We have to give her body at least 60days to recover from the high dose chemo she had, so it is looking like radiotherapy will start some time mid September. How long the radiotherapy will take is dependant on what the plan is going to be. This will be decided over the next few weeks with the team of doctors and radiotherapists. They will decide which site will receive the therapy (either the adrenal gland or the site of the larger tumour on her hip). It may be that they decide to do both areas. It will take between 2-5 weeks of daily trips to Cambridge but the actual therapy is quite quick. We are now down to twice weekly blood counts (instead of almost daily) and her counts are recovering well on their own. She hasn't needed any bloods, platelets or stem cell rescue. This is amazing and shows that her bone marrow has started working correctly. We are back in Cambridge on the 18th.

Today was a bit of a milestone for me. I took Holly shopping to get her new school uniform. I remember thinking, back in February, that she may not start her new school. I thought she might be too poorly, and never go back to school. I remember thinking that I didn't care which school she was allocated, it wouldn't matter anyway. I was wrong. She has proved me so wrong. Thank God. I would love to say she was a joy to take shopping but, the skirt was too long (on her knee!), the shoes were not cool enough and I can't tell you what she thought of the blazer! Suffice to say, she looked wonderful in it and I can't wait for this new chapter in her life to begin.

Go Neil!!!!!!!!

Wow, what an amazing weekend!

Our very good friend Neil (Hollys friend Megans dad) was competing in the London Triathlon on Sunday at the Excel Centre. This comprises a 1500m swim in the Thames, a 40km bike ride and a 10km run. He was doing this for Cancer Research and Holly. Wow...

He has been training hard and we all turned out to support him. It was an amazing atmosphere, all these people pushing themselves to the limit, most for charity. Martina (Neils wife, who also arranged the huge benefit disco for Holly) had arranged t-shirts for everyone with Hollys picture on and Neil had the 3hr barrier to beat. We waved him off to the start with cuddles from his girls, and also from Holly. I have to admit, I wobbled at this point. He was doing all this for Holly. It was huge.

He was amazing. Top 20 in the swim and the whole course finished in 2hrs 45mins! We tried to support him at key points, he did not look amused by the run! This has got to be tough, I have so much admiration for him.

Holly had a fun, if tiring day. We all went back to Neil and Martinas for dinner and drinks in the garden. Holly was having so much fun she didn't want to come home. I had to practically drag her out at 10.30pm, even though her eyes were drooping. She was on her feet for a lot of the day and was totally, happily, exhausted by the end. I was bitten horrendously by the mossies (I think!) last night, and my foot has swelled up terribly. Although I am suffering, I am sure it is nothing compared to the athletes from yesterday. I am with you in spirit Neil!

We are off to Addenbrookes tomorrow for a check up so I will just leave you with my thoughts from yesterday.

Wow, wow, wow.............................