Life has become somewhat of a rollercoaster at the moment and I really want to get off!
The weekend saw another trip to A&E with Holly. She has been having some leg pain since Christmas Eve and as this was one of her first symptoms in February we decided that it needed to be checked out. All was ok with her bloods and general mot,
but we would need to go and see Amos in Addenbrookes to run some more tests.
Today was clinic with Amos. He reassured Holly that he wasn't unduly worried but it obviously needed checking out. It was possible that her magnesium levels were low (this causes leg pain, especially at night) but there is also the possibility that the neuroblastoma has come back. He reassured Holly that if this was the case he has a "plan B" up his sleeve.
This is obviously a worrying time and we won't have any results until the end of the week/beginning of next week. Please keep Holly in your thoughts and I will update as soon as I can.
Tuesday 29 December 2009
Thursday 24 December 2009
Christmas Eve
I would like to wish all our friends and family, who have supported us through a very difficult year, a wonderful Christmas.
I am very thankful to have all my family here with me and my thoughts go out to those that we have met this year that have not been so lucky.
Sunday 20 December 2009
Fun Saturday Night!
Well let no one say I don't know how to have fun on a Saturday night!
Ben and I had plans to go out for dinner with friends and I was really looking forward to getting dressed up, having some good food and wine and just catching up (especially after our last night out a few weeks ago had been cancelled because of Harry's sick bug, and he now has chicken pox!!!!)
Holly had told me she had a couple of bruises on her leg that morning but I didn't worry because her platelets have been stable ever since her stem cell transplant in July. Also there had been no nosebleeds (another sure sign her platelets are low). Holly called at about 5pm to let me know that she had had a nosebleed, so then I worried. I called the out of hours number and they insisted that Holly was taken straight to A&E to have a full blood count done. As far as I could think, there was only one reason for her platelets to dive dramatically, possible relapse.
I think I drove to hospital on autopilot, convincing Holly (and myself) that it was probably nothing, but in the back of my head wondering, not again? Not just before Christmas? Haven't we been through enough already?
A&E was manic which was not surprising considering the snow and ice. We waited an hour for her bloods to be taken and then had to wait for the results. By 9.15pm they hadn't let us know anything, then I spotted the oncology doctor. My God, why was he here. They must have called him in specially because it was bad news. I actually thought I was going to throw up.
He waved us over and then just calmly told us all her results were fine! He was just the doctor on call and had come down to see a poorly child, had spotted Holly was here and wanted to say hello! The conclusion is - Holly is just clumsy and her nosebleed (only very small when she blew!) was because of a cold.
What a night, my children seem to be conspiring together to stop me having a night out. Ben has promised me I will get to wear my new trousers soon!!!!
I am truly going to appreciate Christmas this year.
Ben and I had plans to go out for dinner with friends and I was really looking forward to getting dressed up, having some good food and wine and just catching up (especially after our last night out a few weeks ago had been cancelled because of Harry's sick bug, and he now has chicken pox!!!!)
Holly had told me she had a couple of bruises on her leg that morning but I didn't worry because her platelets have been stable ever since her stem cell transplant in July. Also there had been no nosebleeds (another sure sign her platelets are low). Holly called at about 5pm to let me know that she had had a nosebleed, so then I worried. I called the out of hours number and they insisted that Holly was taken straight to A&E to have a full blood count done. As far as I could think, there was only one reason for her platelets to dive dramatically, possible relapse.
I think I drove to hospital on autopilot, convincing Holly (and myself) that it was probably nothing, but in the back of my head wondering, not again? Not just before Christmas? Haven't we been through enough already?
A&E was manic which was not surprising considering the snow and ice. We waited an hour for her bloods to be taken and then had to wait for the results. By 9.15pm they hadn't let us know anything, then I spotted the oncology doctor. My God, why was he here. They must have called him in specially because it was bad news. I actually thought I was going to throw up.
He waved us over and then just calmly told us all her results were fine! He was just the doctor on call and had come down to see a poorly child, had spotted Holly was here and wanted to say hello! The conclusion is - Holly is just clumsy and her nosebleed (only very small when she blew!) was because of a cold.
What a night, my children seem to be conspiring together to stop me having a night out. Ben has promised me I will get to wear my new trousers soon!!!!
I am truly going to appreciate Christmas this year.
Monday 14 December 2009
MILEY CYRUS!!
Last night I had an amazing treat, to go and see Miley Cyrus live at the o2!
I was taken by suprise when I was picked up by a pink limo and driven all the way to the o2.Me,my great cousin Lauren and Best friend Megan were completely over the moon! Kirsty on the other hand knew about the limo and was a bit more calm about it! It took about 45 minutes to get there but it felt like 5 minutes because we were having such a laugh in the limo!!
When we got to the o2 Megan, Lauren and I could not stop taking photos! LOL. The sights were amazing. We got in the o2, all of us did a music video (well, not kirsty :S) had some dinner and before we knew it, we had 30 minutes before the show started!
At 7:30 Miley's brothers band-Metro Station were due to perfrom, they were totally brill! Then at half 8, Miley herself Performed, she was absolutely amazing!!!!
After the show finished at 10ish we all got back into our limo and thought we would be home in 45 minutes, but we were wrong, it took 45 minutes just to get out of the car park! Me, Lauren and Megan found this very amusing but Kirsty was just fed up and wanted to get home! Then when we finally got out of the car park the limo broke down! So another limo(this time white)came to pick us up. We finally got home at 12 and I went staright to sleep-well, after a few meds atleast!!
Thank you daddy & Kirsty for an AMAZING night!! love u 2 soo much xxx
Holly xxxxxxxxxxx
Thursday 10 December 2009
Cambridge
Tuesday was our monthly appointment with Holly's consultant, Amos in Cambridge. All her blood results were good and she got a clean bill of health. Therefore we are fine to start round 3 of the retinoic acid.
I felt a little down after the appointment. The reason being the the GD2 Antibody treatment that has now been approved in the UK. It is similar to the treatment available only in New York but has a different make up. It is given after the first round of retinoic acid so Holly is not eligible, we are about 6 weeks too late. I knew about this antibody from the conference I attended in November but hearing that it is actually going to be used from now was a little upsetting. However it is very very toxic and means a huge change in quality of life. Holly is having all her 6 months retinoic acid treatment at home and has no hospital stays. The antibody treatment would entail 5 days of outpatient and then 5 days in PICU (intensive care) as an inpatient. During the antibody they are given morphine and ketamine as the pain is very intense. There is a long list of side effects, many of them serious. The antibody has only been tested on 15 children so is at a very early stage and the doctors in Addenbrookes are wary of what will happen.
In a way I am glad I do not have to make the decision whether Holly should have it (she is adamant that she wouldn't!). I have to admit I would have put her through it, I think I would have had to. I think any parent would make that choice, you take any hope offered.
I want to send all the love and prayers to the beautiful Ellen who is starting antibody treatment this week. We have been on this journey together with only a couple of weeks seperating their diagnoses. I think she is the first in the country. Her parents have had to make this choice, I am sure it is the right one.
I felt a little down after the appointment. The reason being the the GD2 Antibody treatment that has now been approved in the UK. It is similar to the treatment available only in New York but has a different make up. It is given after the first round of retinoic acid so Holly is not eligible, we are about 6 weeks too late. I knew about this antibody from the conference I attended in November but hearing that it is actually going to be used from now was a little upsetting. However it is very very toxic and means a huge change in quality of life. Holly is having all her 6 months retinoic acid treatment at home and has no hospital stays. The antibody treatment would entail 5 days of outpatient and then 5 days in PICU (intensive care) as an inpatient. During the antibody they are given morphine and ketamine as the pain is very intense. There is a long list of side effects, many of them serious. The antibody has only been tested on 15 children so is at a very early stage and the doctors in Addenbrookes are wary of what will happen.
In a way I am glad I do not have to make the decision whether Holly should have it (she is adamant that she wouldn't!). I have to admit I would have put her through it, I think I would have had to. I think any parent would make that choice, you take any hope offered.
I want to send all the love and prayers to the beautiful Ellen who is starting antibody treatment this week. We have been on this journey together with only a couple of weeks seperating their diagnoses. I think she is the first in the country. Her parents have had to make this choice, I am sure it is the right one.
Saturday 5 December 2009
What a wonderful night!
Wow, what an amazing night. Holly, myself and our friends Max and Sophie headed into London last night to see the musical Hairspray. It was a VIP trip for Holly's Child of Courage award.
The planning was meticulous. Cab was booked, we were going to have dinner first and then a taxi to the theatre. Well, that was the plan.
The cab never turned up. Every cab company we tried were full. Holly took the initiative and went out and found one of our lovely neighbours to take us to the station. We had a great dinner in TGIs and after a few glasses of wine my frayed nerves were chilled. The girls decided that, instead of a black taxi, they wanted to get a taxi bike to the theatre. Even though it was raining we decided, whatever the girls want they were going to get. Anyway it was bound to be as quick as a taxi, haha (we were running against the clock by this point). We managed to find the only 2 bikes that didn't speak English and got us lost. It was 10mins to show time, cue nervous giggling, then hysterical giggling!
We got there with minutes to spare and were met by the lovely Mark, theatre company manager. He rushed us through and straight to the bar (my kind of man). He gave Holly some gifts and we were seated. All of the rushing around was forgotten as the show began. What a totally amazing, amazing show. The songs and the acting were so outrageously over the top and camp. I urge everyone to go and see it. Holly laughed her way through the whole show and it flew past!
As the show finished we were taken through a door and led onto the stage and met some of the main cast. Phil Jupitus was so lovely and chatted away to us. I think I was ever so slightly star struck, but I had a great cuddle with him. Holly got to explore the stage, climb the dancing stages and try on some props.
Holly was on cloud nine all the way home, she got to see London at its best (including the drunken man who insisted on chatting to me, on an escalator, swaying alarmingly, at quite a height!)
A totally awesome night that Holly, and me, will remember forever.
Wednesday 2 December 2009
Happy Birthday Holly
Holly is 12 today.
She has been feeling a little run down but, after a good rest, is getting back up to form now.
The events of the last year have made me grateful that we are able to celebrate today. Thank you for all your thoughts and prayers, I am sure they have helped get us here.
She has been feeling a little run down but, after a good rest, is getting back up to form now.
The events of the last year have made me grateful that we are able to celebrate today. Thank you for all your thoughts and prayers, I am sure they have helped get us here.
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