Nearly there...but what a month.

Chemo 12 ran as scheduled on the 25th March. However due to the infection on the pin site we had to stay in RCH as inpatients till Tuesday the 1st April. The chemo went as usual with Reid being very unwell on day 2 and sparking up on Day 3. Dr Pincus came to see Reid's leg and decided that it was time for the frame to come off! WOW! So a booking was made at the Wesley and we prepared for Monday 31st.
Mum and Dad had come up to Toowoomba to see Alex run in her cross country (which was postponed due to rain) so they came to visit us on the Friday bringing Alex for a day out. Plus they knew that it would be the last time they would see the frame. Dave came and stayed in with Reid on the Saturday and I had a night in a Motel catching up on sleep. On the Sunday after David had gone I started to feel quite ill. I had gone to McDonalds to get Reid some lunch and grabbed a cheeseburger for me. By 4pm that afternoon the cheeseburger was no longer inside me neither was the toast I had had for Breakfast. I was so sick with suspected food poisoning. I phoned Beus (my beautiful cousin) who dropped everything and came to my rescue. I went to Mat's House (her son) and slept it off. After Mat finished his shift at the Wesley (he is a Med student) he went to the RCH to relieve Beus and stayed the night with Reid. I came back up to the hospital at 5am to get Reid ready for his big op.
We had to leave RCH by 7 am to get to the Wesley on time. Reid's platelets were low so we had to have a transfusion of these before we left. It only takes a little over an hour for platelets to transfuse so this was done as Reid slept. The op was only being done in Day surgery so we returned to RCH after it was all over. When Reid woke up from the GA his first question was, "did they have to take my leg off?" and when he looked under the sheets he saw a bright green cast in place of the Illarzarov frame...'phew' he said. I found out later from Dr Pincus that he sends the used frames to a hospital in India for kids and adults who can't afford them (Ours cost approximately $16,000).
When we got back to RCH we had been moved into another room and isolated as the little boy we were sharing with had been sent down to Paterson ward (the infectious disease ward) with suspected Noiro virus, (diarrohea/vomiting bug). Luckily we did not have this but we stayed away from everyone and Reid was not allowed to go to the play room.
Tuesday 1st April was a SHOCKER.
We knew we had a big day in front of us, just how big was going to knock the wind out of my sails and so many others. Kylie the physio came and got us in the morning to take us over to the Royal Ortho Dept to have Reid's green cast cut off. This was terrifying for Reid who proceded to scream the loudest I have ever heard him. Once they cut this off they moulded his leg with a plaster cast for a new splint. This had to set then they had to cut this off. Once again Reid screamed the place down. They then refitted the Green cast with velcro and we headed back over to RCH for an x-ray. When we got to x-ray they took the cast off again and again Reid screamed. After the pics were taken they put the green cast on again and we made our way to the plaster room. Here we had the green cast taken off for a third time and Reid was asked what colour cast he would like on his leg now. He answered quite steadfastly with "BLACK". (Indicating his mood at the time!) This black cast was fitted and a small window was cut at his knee joint where an infection on the skin had occured. Reid screamed again.
We returned to our isolated room to be told that we would be allowed home but before we could go Reid needed a blood transfusion. I screamed.
Mat arrived as my saviour with a coffee and some much needed 'Reid Relief.' When he heard that we needed blood in the afternoon he offered to come back after lectures to sit with Reid and help him pass the time. It takes approx 4 hours for Red Blood to be transfused. However at about lunch time I received a phone call from Mat telling me that he had gone and picked his Mum up (Beus) from work and was taking her to the Wesley for a CAT scan as she was suffering from and very bad headache. To cut a long story short, by dear cousin had suffered a brain bleed and needed to have a full crainiotomy (spelling??) to stop the bleeding. I thought to myself, can this day get any worse? Well it did.
Reid and I were busily packing to go and I ran into one of the new Mums Who I had not seen for awhile who told me that Mark and sally Stoey; some very dear friends of ours who have a little 6 year old boy (they come from Toowoomba too) and had been fighting AML had been told the Leukaemia had come back and that they should go home, there was nothing more they could do. The doctors gave Lochie 4 weeks. At this point I fell to pieces. Little Lochie Storey had fought so long and so hard to beat the odds and he had been doing so well. He had struggled recently with GVHD (Graft versus Host Disease), but other than this and several hospital infections he looked great. I was miserable. I packed the car and cried all the way home in the peak hour traffic. His Mum and Dad had been given 4 weeks to cram a lifetime into.

Reid's time at home was quick, but it fell right on school holidays so the days were taken up fighting with his sister. The infection on his leg cleared up and the antibiotics were stopped. On the Saturday (12th April)before we were due to go back for cycle 13, David took Reid and Sam on a tour of the HMAS Warrangunga with Camp Quality. They had a ball. I took Alex, Sophie Lissa and Mum and Georgia (a little friend of Alex's) to see High School Musical on Ice at Boondall. We all loved it, but received the very sad news about Lochie on the drive home. Lochie had made it home the day before and had passed away in his own bed at home Saturday morning surrounded by his brothers and sisters in the arms of his Mum and Dad. Once again I cried the whole way home. Life is so cruel sometimes.

Cycle 13 of chemo commenced as planned on Monday 14th April. Mum headed home to Armidale and Reid and I made our way to RCH to be there by 9am. This visit to Banksia ward was more miserable than usual as all of the beautiful staff on this ward had been affected by the passing of four little children in the past week. One being our dear little Lochie.
Chemo ran as usual and then on Tuesday we were told that Reids Black cast was to be cut off at 8.45am followed by a fitting of his new plastic spiderman splint at 9.00am. Dave organised Alex to go to the Keables at 6am and he made his way down the range to Brisbane to be there for Reid as his cast was cut off. However best laid plans always go wrong, the plaster tech came up to remove the cast at 9.45am (Dave was with us)and the the new splint only got to the ward at 11.20am nothing like sitting around. Unfortunately David had to go before the fitting ocurred but all went well. Even though removing the cast does not hurt, it is very scary as a small cutting circular blade cuts down both sides of your leg narrowly missing your skin! He did scream but not too much as he seems to be always braver with his Dad. Dr Pincus saw me later in the afternoon and gave us the best news we could hear. The x-ray showed that the new fib bone (now the Tibia) has completely fused with the remaining Tibia and has almost doubled in thickness! So it has already assumed the Tibia position and has been weight bearing!!! The bone has completely grafted on successfully and we could not wish for a better result. WOW. We no longer need to see Dr Pinkus, as he said "My job is Done!!" We now only have two specialists .....however I feel we will have Dr Tim and Dr Steadman for quite sometime yet! But this was great news and put me on a high that had not existed for some time.
We returned home on Wednesday. Reid wasn't too well and not eating. But we had his NG tube feeds running constantly.
Thursday (17th April)we prepared for Lochie's funeral. Dani, my Clear Day partner and wonderful friend made the pilgrimage up the range to come with David and I to show our love for Lochie and support for his Mum and Dad. Although the funeral was so very sad, it was also so uplifting, and it was great to remember this brave little man. His Mum and Dad and brothers and sisters gave him a wonderful send off. I cried continually, and even though you don't want to think it, you cant help but consider the thought that we maybe next. After the funeral Mark and Sally asked a few of us to join them at their home. We left Reid and Alex in the very capable care of our wonderful neighbours Michael and Aaron. Reid wasn't feeling too well, and shortly after we left he vomited up his NG tube. This had never happened before, but Michael handled everything beautifully and removed the tube with the least amount of fuss. Poor little Reid was beside himself and thanked Michael for saving his life!!! Not that this was a life threatening moment, it would have been quite scary for Reid...not to mention Michael and AAron!
Reid begged to not have the tube reinserted, he promised to swallow his medicines and promises to eat and try some new foods, so far so good. It would be great to see the end of this ugly tube. So we will see how we go.
Tomorrow (21st April)is Day 8 of Reid's cycle so we are off to St Vincents for a blood count, and most possibly a transfusion at sometime through the week. All going well Reid should be at School by Monday 28th April. We have several schedules of Physio in front of us and only one more chemo cycle to go (booked for 6th May) I will keep you posted.