This week has been much more positive and we have had lots of fun with the boys and even been to the beach! Charlies counts were too low to go ahead with treament last week and therefore I chose to keep him away from his playgroup on Friday as exposing him to anything, especially when his neutrophils are so low can cause him to be admitted into hospital which we really dont want.
As things looked to be picking up for Charlie, we decided to have a short drive to the nearest beach,armed with a picnic and buckets and spades. Thomas and Charlie had the best time digging in the sand and looking for shells. Thomas was even mad enough to "swim" in the sea. It was so relaxing watching the boys playing happily and the sun shining,just what we needed. There was a local play area but as Charlies counts were still low, we were unable to go in there in fear of him catching anything so instead we bought the boys an ice cream and had a lovely walk along th sea front.
By Sunday Charlie seemed to be gaining more energy and played with his water table in the garden and him and Tom played endlessly together with various toys. Luckily for us,the two of them get on extremely well-most of the time!! Paul bought Thomas a new bike as an early birthday present and he has been cycling to and from school on it ever since,which he loves doing.
Thomas had an absolute ball at the after school party last Thursday and by all accounts was showing everyone how to breakdance! I had the headmaster stop and ask me where he got his moves from as he was even trying to get him to copy him! On the way home from the party,Thomas informed me that it was the best school ever and even better than Littlemoor and Greenacre-his previous schools (result)!
Since Charlie has gained more energy,I have been able to walk to school (him in pushchair and Tom on bike) which has been wonderful. Fresh air and exercise are so under-rated! We have also met up with a friend and her little girl and spent a lovely time at the Botanical gardens although Charlie was shattered and asked to go home after less than an hour but at least hes getting out and having some normal time.
After having his bloods taken early Wednesday, I called the hospital to find out if his counts has picked up enough for Thursdays treatment. To my delight they had, and we were good to go for the next stage of treatment. This was a double edged sword as the treatment was intense to say the least.
We arrived at the Royal Children's hospital early on Thursday morning and Charlie had his usual obs done-weight,blood pressure etc then he was"hooked" up to a machine (or robot as I tell Charlie when he asks what it it) for hours of fluid which was to protect his bladder. I was told by our Consultant that one of the Chemotherapy treatments he was having severly damages the bladder, so this lessens the likelihood of it happening. Charlie was then called into Theatre where he was to have a Lumbar Puncture (Spinal Tap) and also another dose of (another type) of chemo in his spine along with a device fitted to his leg whereby chemo is administered by us if we choose to take up the challenge! The chemo in his leg will need to be injected into the device once a day for 4 days this week and the same for next week.
When he woke from theatre,Charlie wanted to sit with me for a cuddle eat some food (as he'd been fasting since the previous night) and then proceeded to screamed in pain saying his leg hurt. "Mummy make me better" were his exact words which is hard to take when you're trying to be tough for him. The nurses gave him some painkillers and considered repositioning his "device" in his leg but this time he would be awake if they did it. Luckily he soon calmed down and the pain subsided so it wasnt necessary to do this.
Charlie was then given the chemo shot in his leg "device" and after the nurse struggled to do it on numerous attempts,I made the decision that we would bring him in each day for them to do it as it was too traumatic to even attempt to do it at home ourselves. Him fearing me or Paul is not something we want-he still hasnt got ovet the fact we trimmed his hair so god knows how giving him a chemo shot would go down!!
We still had a few hours of fluid to run through his body so we sat talking,reading books and watching DVD's.Another type of chemo was then hooked up to his "robot" and administered through his port. Not long after, Charlie started to be sick-everywhere! Luckily we had a change of clothes and all was sorted.
It was 6pm by the time we left the hospital and I had a migraine and felt sick so as soon as we got home,I went straight to bed and only got up to administer Charlie yet another dose of Chemo, this time a tablet diluted in a syringe.
Waking this morning I felt just as sick and ill so Paul has needed to take the day off work to take Tom to school and Charlie to the hospital for his leg injection.
Things will pick up and we have some nice things planned for over the weekend. Mum and dad arrive next Thursday evening so things WILL be better!! I havent seen my dad since January and am a little worried how he'll take seeing Charlie as he dotes on him. That aside, we will have a great time and do loads of fun things-we'll make sure of that!
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