Cast Number 10!

Reid and I made the pilgrimage back to Brisbane last Thursday to have the Illarzarov frame removed. This time surgery was to take place at the Holy spirit Hospital in Chermside. Lovely Hospital and very quick. We went in at 11.30am, surgery was at 2pm and we were out of there by 5pm!! Not bad I thought. We stayed with friends for the night. Reid's leg was put into a plaster cast and he and his little friends enjoyed scribbling all over it that night. Kept them entertained whilst I enjoyed a glass or two of Red!
Reid recovers so quickly now from General anesthetics. In a way I feel very lucky that he has very little fear inside operating theatres; but on the other side of that thought how unfair all of this has been to him - I counted that this GA was his 8th. and This Green cast is his 10TH!!!!
The next day we went over to Royal Childrens Hospital and Scott in the Plaster room had the dubious task of removing the plaster cast. This is a procedure that Reid should be used to ...but he hates it. When the cast was removed, Dot from Orthotics moulded his leg for a new leg brace. Yep, he has to go into a new brace and this time it will go right up his leg over the knee. I will post a pic when we get it.
After he was moulded Scott replastered Reid's leg in this pretty Green colour! Reid now resembles Kermit!
The new brace should be ready in two weeks so in the meantime Reid is not allowed to swim or get the leg wet. He has open wounds under the green cast (from the pin sites on the Illarzarov)and we will have to deal with these when it is removed, hopefully all will be fine.
Reid is very well, we are so very lucky.

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!!!