Transformer No.2

We ducked and weaved the initial diagnosis back in March that Reid needed another Illarzarov frame to help his leg mend from a break he sustained in December 2007. I honestly thought his leg was getting better. He seemed to have no pain and the way he was running around, climbing trees and riding his bike, I thought I had good reason to question the two highly professional Orthopaedic surgeons looking after my son! But even though they did agree with me to begin with, the leg failed to get better so last Monday July 27th, we went back to The Wesley Hospital and had another frame attached. Reid also had to have a small bone graft to help the growth along from his right hip. The Op went very well and the original grafted bone is apparently looking very good. Dr Pincus also removed a rod that was in Reids leg from his original surgery and took out some scar tissue under his growth plate. Reid woke up from surgery very well with plenty of morphine on board. We got out of hospital on Thursday 30th July and have decided to take this week off school as well (more due to the massive influx of the Swine Flu).
We go back to Dr Pincus for a check up next Monday 10th, until then we have to get reid used to wearing a shoe...he hasn't worn a shoe on his right foot since May 2007!

2 Years GONE!

Can you believe it? It was two years ago today that David and I were told that something sinister was growing in our sons' leg! All those days spent in hospital, fighting, praying, crying, being emoitonally and physically drained seem so long ago. Its a strong, poignant memory, but one that (thankfully) is fading as I watch Reid cope easily with his day to day activities.
A month ago it was thought he would have to have another Illarzarov frame put on, as a break from December 2008 just didn't seem to want to heal. However two days before the op I phone the Orthopaedic surgeon and asked if would be possible for him to see us before the op as I thought Reid was much better. We had another x-ray and Dr Pincus compared it with the one taken a month prior - amazingly, my feelings were right and the surgery has been postponed (hopefully indefinately) We see Dr Pincus again next week for another check up, but gaging on Reid's mobility all looks great.

I drop him off and pick him up twice a week from Gymnastics!@! I know; what a full circle we have come.

Reid will continue to have MRI's and CT Scans for next few years until remission is finished (approx 4 years to go). He will see Orthopaedic surgeons for the rest of his lfe but the visits will become fewer. He will most probably walk with a limp and he may not be able to run - but with the big picture in site - who cares.
If anything changes I will update, but at the moment, David and I are celebrating our two year anniversary quietly but very happily.

Reid ready for the Peak to Park event | Sport | Toowoomba Chronicle

Reid ready for the Peak to Park event | Sport | Toowoomba Chronicle

Just a Quick Update

Reid is so well. He has started hydro therapy and his walking is slowly coming along. Yesterday we filled our pool all ready for summer. Today is cold and wet and the pool, is almost too full! Reid got through his last x-ray and given the all clear again. We have a bone density test scheduled for the 19th September and CT scans and MRI on the 10th October.
I am slowly getting back to normal. I seem to have melted since we were given the all clear, and my skin has been terrible. But with the help of dermatologists and counsellors I am now feeling a lot better.
Every day I thank God for how lucky we are. I now have a renewed feeling of what life is all about, and without sounding too "airy fairy", I dont think I really appreciated anything until I nearly lost it.....Someone recently told me that "our Wealth is the Health of our children". This is so true. Without Alex and Reid, David and I are nothing. Nothing else matters. Cherish your kids and their health. xx

REMISSION!

We made it! Reid is officially in remission.
Firstly I must apologise for not updating this blog sooner, but I wanted to fill the final blog with nothing but good news, so I held off for the best of the best. Thank you for your patience.
The past three months have been wonderful for Reid. We have settled back into home life and school easily and Reid has enjoyed catching up with friends and cousins and just having the luxury of sleeping in his own bed. We have had some down times when Reid fell out of wheelchair (mucking around with his friends) and broke his femur. This placed him into a spica cast from his toe to his belly (see pic). Since this was put on he has learnt to walk in it and manipulate himself quite easily around the house. He also had an ear infection whilst Mum was in charge but seemed to bounce back as a normal child would with the aid of necesarry anti-biotics.
On May 30 Reid was granted his Make-a-wish. Reid's wish was to fly in a Black hawk helicopter. This wish was granted but not in a Black Hawk, he actually had the opportunity to fly a Kiowa helicopter. He (We) had a ball. He and alex were given custom made uniforms and we were treated to a day at the Oakey Army aviation Flying School Base. There was lots of media involved so we starred on several channels and in several newspapers. The army looked after us wonderfully as did the Make-a-Wish foundation. This was truly a day we will never forget.
On the 14th June (the day after Reid broke his leg) Reid celebrated his 7th birthday. We went 10 pin bowling, and we invited his entire class. We all had a wonderful time and the people at the Bowling centre themed his party as a special treat with his favourite character...Sponge Bob!
David and I have recently returned from two weeks in Italy. We had a wonderful break and my forever suffering(but incredibly supportive) Mum took control of our off spring. Reid had broken his Femur the week before we left so I was quite nervous about leaving this heavy lump of a boy for Mum to look after but with the wonderful help from my beautiful Aunt and Sister they handled it all very easily. Reid also made it a little easier learning to walk using the cast as a support. I relaxed in 6 star luxury on a cruise ship, and only had to deal with skin dermatitis brought on by relinquishing a lot of built up stress. David contributed to the ship being drunk out of alcohol and had a wonderful time. I dont think the europeans were ready for a ship filled with Australians!! we returned home on the 2nd July without one of our suitcases....Qantas is still tracking it down..but other than that we had the most amazing time.
This past week Reid and I and alex trwkked to Brisbane for Reids scans. He had a CT on his lungs an MRI on his right leg and a full body bone scan. We stayed with some friends in Brisbane and David joined us for our appointmant with Dr Tim Hassall to receive the results yesterday (10.07.08) "ALL CLEAR" were the word Dr Tim said. So we have now been in remission since chemo finished but we only knew this as of yesterday. Our first three months are up. We go back to Royal Childrens Hospital on 20th August to see a bone density specialist and to have an x-ray on his chest. His cast stays on till September (we think). We repeat all his tests in 12 weeks and will do so for the next year.
Thank you to you all for following our journey. We are so lucky and so very thankful to everyone for all your prayers, positive thoughts, love and never ending support over the past 14 months. We have all shared this ride, and without you we would have found it far more scarier than it was. We now embark on 5 years of remission before Reid is offically cured...but the future looks to be so very bright.

Say Goodbye to Chemo!

Twelve months ago today, we received Reid's diagnosis. The 25th May 2007 will be a date etched in our minds for the rest of our lives.
Although most of the past twelve months has been a blur I am thankful that I took the time to write down my feelings as the days past......"12pm Dr Helen Irving asked to speak to me. I have quickly learnt that when a doctor wants to speak to you and they take you to a small room, close the door - then the news is not going to be good." Today 12 months on we are so thankful to so many people. We thank God that our little boy is still here with us. However we still question God, why did he have to go through this? I am sure this will take sometime for us to come to terms with. Reids final chemo was cancelled due to a very bad infection in his central line. The Central Line had to be removed and Dr Tim felt that it was not necessary to continue with the final chemo. He quite bluntly said.. (I spose there is no other way to say stuff ablut cancer).."if the cancer was to return then I can safely say that it would not be because the final chemo was not administered." I was happy with this and quite pleased that we did not have to go through the rigours of the final treatment. However we were not out the woods yet.

The lead up to this was quite traumatic, as Reid had been so well in the week prior to the infection. He had even spent the week at school and loved seeing his friends and teachers again. On the Friday before the Anzac long weekend, I took Reid to St. Vincents for a blood count and line flush. By the end of the day Reid was not firing on all cylinders, and I put this down to having had a huge week at school. He had also been complaining that his leg was sore. I was also hoping my new nursing instinct was incorrect as I was supposed to be going on a girls weekend to Sydney the next day. This trip had been planned for months. By 8pm Friday night I was with Reid at St Vincents emergency and Reid had a temp of 39.5. He had a swollen foot as well. The Doc on duty thought that he could have cellulitis, I was not convinced with this diagnosis, but accepted it. Blood was taken to do a culture report on, his temp was lowered and we returned home around 11pm. with oral ainti-biotics. I hardly slept as I checked his temp hourly to make sure it was not rising again. At 3am his temp was stable at 37. I ummed and erred about going to Sydney, but in the end decided to go as Dave was going to be here and I was sure he could handle anything that was to dished up. I rang David from the Brisbane airport to check on things. He said that Reid did not have a temp, but was not well, but everything would be ok and to have a good time. I boarded the plane and turned off my phone. The flight only goes for just over an hour. I turned the phone back on when we touched down to hear two messages from David saying his temp had gone to 40.5 and they were in hospital. I got off the plane and with the invaluable level headed help from my very dear friends, got my bag, changed my ticket and got on the next flight back to Brisbane. I was in Sydney for 45mins!! I phoned David and asked if Reid could be transferred to RCH, and was told that Reid was too ill to be transferred. I hired a car in Brisbane and drove back to Toowoomba. When I saw Reid I was so pleased that I had come home. His temp was still very high and he had a lage swollen area on his leg. After x-ray we found that his leg was broken. The break was right in the middle of the grafted fibular...

The cultures taken on Friday night grew a bad bacterial infection and we were finally transferred to RCH on the following Wednesday. Reids leg was xrayed again and it was decided to cast it in a weight bearing cast the following Monday. after the cast went on we were allowed home 12th May. We were sent home with several anti-biotics and instructions to continue weight bearing and physio.
Reid went back to school 19th May. We decided to only do half days and see how Reid handled that. Although he was tired, having Kim (his wonderful carer) with him constantly meant that he could remain focused and gain as much as he could within the short school periods. However by the end of the week I had a call from an Orthpod from RCH who was quite alarmed when I told him Reid was 'weight bearing'. He told me to stop all weight bearing and cease physio up untill we see Dr Steadman on Tuesday (27th May).
Reid is so well at the moment. He even has eyelashes and eyebrows!! His hair is coming back slowly but it is there! I am so happy that he has finished the chemo, however he has so much more in front of him by means of rehabilitation. The Orthos told me to expect up to 30 breaks on the graft throughout the next 5 years. One down only 29 to go!!!

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.