I always think that when you think life couldn't get worse and throw more at you, it always does! Certainly true over the last couple of weeks, beginning with some mystery spots Thomas got.
Firstly Matthew got a fever which was just below admission status. I spent all night up with him checking his temperature every couple of hours as it can't be left, as you would a normal child. To find it settle in the morning and then I had to go into work! Money to pay bills and all that jazz.
Then, the childcarer became ill, so couldn't look after Abigail and Thomas, so I had to ask my mum to come over, which she find difficult and so does Thomas. But she will always help if she can.
I took Matthew to the Drs as his breathing was quick, and it seemed easier rather than an hour in the car to be told all was fine, if not we could head on in. Breathing fine but he had a pink throat and pink ear. I rang the hospital to tell them and no one called back. Unknown to me, his Neutrophil count (immunity) cells were plummeting. I rang them to be told carry on as normal etc etc.
Monday of the third week of the chemo block, still spiking low grade fevers, but apart from the continual hacking cough that hes had for weeks on end, all was as fine as it could be, but they took blood to culture on the safe side. Famous last words of the consultant "he's ok now, but I can't promise he wont spike a fever tonight". Well he did, 45 minutes after getting home that afternoon. By the time we'd got back to the hospital and he'd had all manner of poking and prodding done it was 10pm.
At this point, the general consensus of thomas's spots was that they were some form of pox, most likely shingles as hed had chicken pox. So Matthews immunity was tested again as well.
Tuesday, results are back, its a strep infection. No details of treatment, no one knew. I was not happy, not only that I had to leave Matthew in the hospital alone at night from that point. He hates it and I hate it. I was strong for him, but cried most of the way home. The idea is that his dad stays with him when he's in hospital, but unfortunately he's not seen the Children since August due to not abiding by access arrangements he has made, but has not taken any steps to arrange further access via the courts. I did let him know that Matthew was ill, but I didn't get a reply.
Wednesday, Matthew can go home on Thursday after they have changed his antibiotics, but it will mean coming back every day until hes had 10 days of treatment. At least he can go home! Then get a message from Lynsey our childcarer to say that her partner has a stomach bug, which means again she can't work. Whilst she is fine, the risk of Matthew getting it is there. So had to ask Mum again. I think both her and Thomas are at their limits.
To top the whole lot off, I got a stroppy letter from my solicitors telling me that if I didn't pay them they were going to take me to court! The arrangements had been made that they took their fees from the house sale money they are holding. Swift email sent to solicitor, not a happy bunny. Then Saturday a stroppy letter from the council, telling me I had to pay all my council tax or face court as I had been late more than once, due to an error of theirs. This came after receiving a bill from them that told me I had nothing to pay! Sort it out guys!
Needless to say both the Solicitor and the Chief Exec of MDC came in on Monday morning and got short shrift via email from me! All sorted by close of business Monday, but why should I have to put up with this?
Matthews blood count has failed to rise. He's finished his antibiotics but that cough is still there, it must be 7 weeks or so now. So we had a trip in Friday but de-accessed and sent home again. He's still not right and has a sore under his tongue today. Blood to be taken again on Thursday with the hope it can go ahead on Friday.
Just about established plans for our fundraising drive and got the account forms for the bank. I need to write some words about what I am doing now, short and concise but hard hitting so I can get the money. Hmmm.........
Sunday, 31 October 2010
Tuesday, 12 October 2010
Delayed Intensification Two - 12th October
Well, we've started the next block and all is well (ish) so far. He had a really heavy week last week, with two lots of IV chemotherapy on Monday, Intracmuscular Chemotherapy (a rather painful injection into the thigh muscle) on Wednesday, two flue jabs on Thursday, and a trip to theatre on Friday for them to give chemotherapy directly into the spinal fluid to protect the brain.
It was a rough weekend with him not feeling so good, but we've had worse.
Back to the hospital yesterday for a repeat of last Monday, what a delay! Its frustrating and I don't like to complain. Whilst he is a very sick little boy, he wasn't in need of "nursing" just treatment and the nurses are so stretched. We got there in the end.
On top of that I've decided to do some fundraising for the ward - specifically for the Oncology patients and their parents, the sleeping facilities leave something to be desired and its important to try and make things as comfortable as possible.
A very good friend is helping me, more than I could ask, we are going to try and do lots of little things into the new year and the current plan is to try and organise a charity ball, with an auction and raffle.
It would be great if we could pull this off!
The worst thing today Matthew had a bit of a wobble and told me he wishes he could travel through time so this would all be over. What on earth can you say to that? Obviously I did say something, but everything seems so inadequate. It breaks my heart.
Thing is though, I am not sure if this will ever be truly over. The check ups will carry on for life virtually, partly because they are still learning so much about the disease - 20 years ago most people died from this.
It was a rough weekend with him not feeling so good, but we've had worse.
Back to the hospital yesterday for a repeat of last Monday, what a delay! Its frustrating and I don't like to complain. Whilst he is a very sick little boy, he wasn't in need of "nursing" just treatment and the nurses are so stretched. We got there in the end.
On top of that I've decided to do some fundraising for the ward - specifically for the Oncology patients and their parents, the sleeping facilities leave something to be desired and its important to try and make things as comfortable as possible.
A very good friend is helping me, more than I could ask, we are going to try and do lots of little things into the new year and the current plan is to try and organise a charity ball, with an auction and raffle.
It would be great if we could pull this off!
The worst thing today Matthew had a bit of a wobble and told me he wishes he could travel through time so this would all be over. What on earth can you say to that? Obviously I did say something, but everything seems so inadequate. It breaks my heart.
Thing is though, I am not sure if this will ever be truly over. The check ups will carry on for life virtually, partly because they are still learning so much about the disease - 20 years ago most people died from this.
Time to October 2010
The thing that struck me most - looking out of the hospital window on to the busy city below, watching everyone going about their lives as if nothing had happened. It didn't seem possible that the world could just carry on, when our own personal world had just come crashing down. Everything we knew had changed in an instant and dramatic as it sounds life would never be the same again.
Treatment started using steroids and various forms of Chemotherapy. He had a couple of blood transfusions and was given platelets to boost his own counts.
This is one of my favourite pictures. This was the first time he had got dressed in nearly two weeks and he looks healthier than he had done for a very long time. The only draw back is that suddenly he was starting to look more grown up. His eyes have changed and the sparkle has gone out of them.
I spent time reading the literature we were given about various trial options, that was a hard choice to make, but you have to think of other children as well. We chose to opt in for the first part of the trial, which involved looking at is bone marrow under a very advanced microscope. They get a view at day 1 and then day 28 and this would then define what treatment programme he would go on, whether the result was high or low risk. If his result came back as high risk, we could opt to have him randomised for various treatments, which is researched to see which one long term offers the best cure. The idea is to be able to give as little chemotherapy as possible to provide a full cure. Sometimes the treatment itself causes the problems!
After two weeks and two days Matthew came home. I was absolutely terrified, no nurses on hand if I was worried, although they were on the end of the phone. I was so scared that something was going to go horribly wrong.
Through out all of this, confronted with the harsh reality of what was to come on the ward, I thought that the worst thing I could deal with was him losing his hair. I was so scared of he being bald as I though it would change him beyond recognition, a very selfish thought I suppose. But I was truly unprepared for what the steroids were going to do to him.
23 March and he had a Portacath central line fitted. He pretty much chose that himself as he wanted to be able to shower properly and go swimming when he could. 3½ years is a very long time not being able to do the things you want to do! This was also day 28 with the important MRD test.
A week later and the steroids had reached their peak.
This I was un-prepared for! This was not my child. To the man on the street, he looked like some fat child, no-one knew what was wrong with him. He didn't look like Matthew, he didn't sound like him and he certainly didn't behave like him. He went from being absolutely fine to the pits of despair in minutes. Asking the same thing over and over, "why did I get this?" "why me?". There is no answer to that question, the answer of course is pure bad luck, but its an answer that is completely inadequate.
Results day - wow. I don't really know how I felt when I rang to get the results, but I wasn't really prepared for the answer. He wasn't low risk. I was absolutely gutted, low risk would have meant pretty much 100% cure rate. The good news was, he wasn't high risk either - so I didn't need to make the decision about the trial. He is what they call intermediate, in the middle, undetermined, lots of words and no many answers. This meant he would get what they call the gold standard treatment. Two intensification blocks of 6 weeks of lots of chemotherapy with breaks in between and then 2½ years of maintenances treatment after. A long 9 months ahead of us. There was one question they couldn't answer - where was he in that intermediate band - well - as its turns out he could be near low but he could be right up there by high, they simply don't know. That is what gives me the nightmares, what if this treatment isn't enough!
He had his first hospital admission for illness at Easter and spent Easter in hospital and then had another stay a few weeks later with a line infection. He was quite poorly not eating or drinking but once the infection was sorted things improved.
Matthew was able to go back to school for part of the summer term. He did part time hours but found it exhausting. He did this until his first intensification block started in June.
I wasn't looking forward to starting heavy treatment again - unprepared for how it would make me feel. We had got into a good routine on the interim maintenance, medicating him at least once daily with oral chemo at home.
And of course there was the hair issue, how was I going to deal with this. Actually as it turned out, I was ok with it. He simply looked quite gorgeous and really rather cheeky. He was admitted about 10 days into the block, probably with a virus and looked worse than I think he was.
His hair was thinning at this point and I said to him after two weeks that we would shave it at the weekend, it didn't get that far. On the Thursday I took a picture of the thinning hair.
and then he went for a shower!
At the end of this block we ended up with 15 hospital trips in that many days, I was exhausted and just about holding it together and he was really poorly. Eventually he had another blood transfusion and then everything was on the up again. I had forgotten what it was like to be in that horrid dark place.
Matthews birthday - he was well enough to have his Fantasy football party on his birthday, although it absolutely exhausted him and I was worried it had been two much, after had a nap and he had then slept straight for nearly 14hrs I was on the verge of calling the hospital!
After having a fairly rotten summer holidays, it was lovely to see him able to go back to school with his sister and his little brother started school as well.
He's managed to go to school part time for the first month until the second intensification and is now off again.
This is Matthew just before the second block. Its striking how mature he now looks and his view on life has also changed drastically. I get glimpses of the cheeky monkey he was, but I don't think he'll ever quite be as carefree again. Life has dealt him a harsh blow and he has had to grow up very quickly.
Treatment started using steroids and various forms of Chemotherapy. He had a couple of blood transfusions and was given platelets to boost his own counts.
This is one of my favourite pictures. This was the first time he had got dressed in nearly two weeks and he looks healthier than he had done for a very long time. The only draw back is that suddenly he was starting to look more grown up. His eyes have changed and the sparkle has gone out of them.
I spent time reading the literature we were given about various trial options, that was a hard choice to make, but you have to think of other children as well. We chose to opt in for the first part of the trial, which involved looking at is bone marrow under a very advanced microscope. They get a view at day 1 and then day 28 and this would then define what treatment programme he would go on, whether the result was high or low risk. If his result came back as high risk, we could opt to have him randomised for various treatments, which is researched to see which one long term offers the best cure. The idea is to be able to give as little chemotherapy as possible to provide a full cure. Sometimes the treatment itself causes the problems!
After two weeks and two days Matthew came home. I was absolutely terrified, no nurses on hand if I was worried, although they were on the end of the phone. I was so scared that something was going to go horribly wrong.
Through out all of this, confronted with the harsh reality of what was to come on the ward, I thought that the worst thing I could deal with was him losing his hair. I was so scared of he being bald as I though it would change him beyond recognition, a very selfish thought I suppose. But I was truly unprepared for what the steroids were going to do to him.
23 March and he had a Portacath central line fitted. He pretty much chose that himself as he wanted to be able to shower properly and go swimming when he could. 3½ years is a very long time not being able to do the things you want to do! This was also day 28 with the important MRD test.
A week later and the steroids had reached their peak.
This I was un-prepared for! This was not my child. To the man on the street, he looked like some fat child, no-one knew what was wrong with him. He didn't look like Matthew, he didn't sound like him and he certainly didn't behave like him. He went from being absolutely fine to the pits of despair in minutes. Asking the same thing over and over, "why did I get this?" "why me?". There is no answer to that question, the answer of course is pure bad luck, but its an answer that is completely inadequate.
Results day - wow. I don't really know how I felt when I rang to get the results, but I wasn't really prepared for the answer. He wasn't low risk. I was absolutely gutted, low risk would have meant pretty much 100% cure rate. The good news was, he wasn't high risk either - so I didn't need to make the decision about the trial. He is what they call intermediate, in the middle, undetermined, lots of words and no many answers. This meant he would get what they call the gold standard treatment. Two intensification blocks of 6 weeks of lots of chemotherapy with breaks in between and then 2½ years of maintenances treatment after. A long 9 months ahead of us. There was one question they couldn't answer - where was he in that intermediate band - well - as its turns out he could be near low but he could be right up there by high, they simply don't know. That is what gives me the nightmares, what if this treatment isn't enough!
He had his first hospital admission for illness at Easter and spent Easter in hospital and then had another stay a few weeks later with a line infection. He was quite poorly not eating or drinking but once the infection was sorted things improved.
 |
| On the mend |
Matthew was able to go back to school for part of the summer term. He did part time hours but found it exhausting. He did this until his first intensification block started in June.
 |
| Exhausted after school |
I wasn't looking forward to starting heavy treatment again - unprepared for how it would make me feel. We had got into a good routine on the interim maintenance, medicating him at least once daily with oral chemo at home.
And of course there was the hair issue, how was I going to deal with this. Actually as it turned out, I was ok with it. He simply looked quite gorgeous and really rather cheeky. He was admitted about 10 days into the block, probably with a virus and looked worse than I think he was.
 | ||
| My little vampire |
His hair was thinning at this point and I said to him after two weeks that we would shave it at the weekend, it didn't get that far. On the Thursday I took a picture of the thinning hair.
 |
| Now you see it! |
and then he went for a shower!
 |
| and now you don't! |
At the end of this block we ended up with 15 hospital trips in that many days, I was exhausted and just about holding it together and he was really poorly. Eventually he had another blood transfusion and then everything was on the up again. I had forgotten what it was like to be in that horrid dark place.
Matthews birthday - he was well enough to have his Fantasy football party on his birthday, although it absolutely exhausted him and I was worried it had been two much, after had a nap and he had then slept straight for nearly 14hrs I was on the verge of calling the hospital!
After having a fairly rotten summer holidays, it was lovely to see him able to go back to school with his sister and his little brother started school as well.
 |
| Matthew, Thomas and Abigail |
He's managed to go to school part time for the first month until the second intensification and is now off again.
This is Matthew just before the second block. Its striking how mature he now looks and his view on life has also changed drastically. I get glimpses of the cheeky monkey he was, but I don't think he'll ever quite be as carefree again. Life has dealt him a harsh blow and he has had to grow up very quickly.
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