Well the final chemo has been done and now we have to hydrate until his methotrexate level has dropped to below 0.1 before he is allowed to go home. We are spending our final weekend in Room 7 and Lochie is here to join us, which will keep them both amused.
Maddie is also in hospital and so is Angela, but they are in seperate rooms. We all had pizza for dinner tonight which we got from Leederville and was really nice. Only problem was that Harry then started to feel sick and was!! That was probably my fault as I popped over to the Foundation today and was saying to Kellie that I can't remember the last time that Harry was sick! Well I can now.
After walking without the crutch the other day, harry has been back in the wheel chair again. I spoke to the physio and we think that because he has been off the foot for so long that he needs to build things up really slowly. He seems to do no walking and then does lots of walking and then we strain the foot again. I have said that he needs to do bits of walking whilst he is in the hospital but I am sure that it will just be one big battle.
Harry put his application in this week for 'Make a Wish'. He gets to go overseas as he is 10 and has asked to go to Japan. They are granted their wish if their condition is life threatening and this has to be agreed by his doctor. We got a phone call today and they said that he has been accepted onto the wish programme, and we now have to go through the other 6 stages of the process. These are to do with meeting the people who work at make a wish and talk to them about why he would like to go to Japan. Then it is down to arranging when he wants to go etc. So we had better do some research on the weather etc. and when is a good time to go.
I was packing the bags this morning and thinking, how we will hopefully never have to come in here for chemo again or spend another night in the hospital. Harry has done so well on his treatment and managed to carry on with school wherever possible. We have to do a CT scan, bone scan, GFR (kidney test), Echo and audiology test over the next few weeks and then we will meet with Harrys oncologist to see how things are looking. We have done the treatment part, but the scary thing is that he has to have scans and tests for the next 5 years. Once you get to the five year stage then you can breathe a sigh of relief as you should be all clear. The other thing when we started treatment and they were telling us about all the possible things that can happen, and Harry was insistent then that there was no way he was going to have a NGT (nasal gastric tube) for feeding, and he has got through chemo without needing one. Another reason he takes after me, loves his food!!
On a very sad note Elliot Parish passed away in the early hours of Thursday morning. He was only 4 years old and had been treated for a brain tumour and spinal cancer since October 2009. His father Rick Parish, climed Mont Blanc with a team of 19 other climbers to raise money for a 3D mollecular imaging machine, and raised a total of $920,000. This huge effort has paid for the machine and towards items on the ward that we need. Rick is an inspiration to so many people, and through all the heartache and suffering he has still managed to raise such awareness for childrens cancer - that it is positively amazing. Ricks wife, Em, is someone that I am pleased to have met through all this tragedy. She is a lovely lady, and a great mother. I remember chatting to her at the Fathers day lunch at Freshwater Bay when Elliot had been given the all clear for that time before his cancer returned. We laughed about when you catch up with friends, and you say to them, 'how are you?' and they tell you about their child being off school for a day or two with gastro and how their week was disrupted. Sometimes you have to walk away, because all you really want to say "is give me gastro any day of the week."
Elliots funeral is on Thursday and I will go along with many others to say our goodbyes to Elliot and pay our respects to the family. Rick continues to lead the Telethon Adventurers and is now more determined than ever to raise money to try and help find a cure for childhood cancer. Making a difference... one step at a time.
Have a great weekend, and remember to squeeze those you love so tight, as you never know when you will have to let them go. xxxxxx
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