New Beginnings

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Can you believe it that is has almost been four years since Reid was diagnosed and I am still writing this blog!
Well today I just have good news. Its about time. Last Monday the 21st February Reid and I went off to the Wesley Hospital to have his Frame removed. Originally it was thought that he would need a cast on his leg, however I let the Orthopaedic Surgeon - Dr Pincus make the call and he felt a cast was not needed!! Pretty Scary, but Reid was so excited.
He went off to school on Tuesday the 22nd February for the first time in 4 Years with nothing on his leg. All he wanted to do was "blend in" and thats what he did. As it has been in the past I have found him easily amongst a crowd of little boys all in the same uniform - today was a different story. So now all we have to do is see the Ortho next Tuesday - have some xrays regularly, have a MRI on both legs to check for the cancer, have xrays on his lungs to check them too and pray for no more broken legs.
Reid will continue with Michael at Willows Gym to help him strenghten his leg and whole right side of his body. Lets hope this is the last post for awhile!!

Here we go again!

Last Monday, Reid had his fourth spatial frame fitted. As you could see from the pictures last time Reids' leg was very bendy, so surgery was inevitable. Dr Pincus not only added another frame to his leg he also cut a wedge out of the bone lower than the break to push the bones back into some sort of straight position. You may be able to see it on the pic. I was thinking that Reid would have some terrible pain with this procedure, but he proved me wrong (thank God) and we were out of hospital on wednesday and back to school last Thursday. Three hours after surgery Reid was sitting up in bed watching TV eating Hot chips and asking for Jelly Snakes!! And he had a Morphine PCA, but didnt need to use it..pity he couldnt hand it over to the MUM!
I have now come to realise, even though I have been told on so many occasions, that Reid's leg is not going to be better in months, this is going to take years; and I need to settle in for the ride and not fight it. It sometimes takes awhile for me to get things to sink in.
Today I took Reid to Willows Gym. He starts there tomorrow with his first ever personal training session. I thought we might give it a go. Something different to help Reid gain an overall body strength as well as working on strengthening his leg. He is very excited and cant wait for 5.30pm tomorrow!

Relentless...

Reid is growing as is Alex and time keeps ticking on but Reid's little leg continues to cause grief. Two weeks ago Reid had the bottom frame removed from his spatial frame. All looked great, and even though he had had a general anethetic Reid was back at school the very next day - barely 12 hours since the op!! He was walking and moving without crutches within the week and all looked so very good!
Then he had a fall and lots of tears and more x-rays. The xray didnt show a break but the exterior of Reid's leg was so swollen we knew something just wasnt right. We waited for the swelling to go down and hoped that the large bump would go away. Eventually my Dad stepped in and made me come to my senses and I MMS a picture to Reid's Surgeon who said "..it looks shithouse, come in and see me Tuesday!" Thats today.
Reid had another x-ray and this one definately showed a break. Reid's leg is now so crooked that Dr Pincus has decided to operate again on Monday. This time he will remove a small wedge of bone from his tibia and straigten the leg - thus shortening the bone (i have been told not to worry about this - "we will fix that when he stops growing")Dr Pincus will then put another frame on on the lower part of his leg similar to the last frame - Spatial Frame No.4! Break No. 11. This frame will be on for some time and we need Reid to be completely confident with it. He will need to walk lots and very soon after the op. I will let you know how he goes! x

Operation Spacial frame No 3

Wow, we are home and only 3 days post surgery!! Reid has his new frame on and it looks pretty scary but its got an awsome job to do. Reid didn't handle the last anesthetic too well. He woke up feeling pretty groggy and due to his complete knowledge of operations and their aftermath he was not too happy with this one and started to tell the nurses that he must has been given the wrong anesthetic cos he is supposed to feel a lot better than this...so I was called up to Recovery to calm him down as he was making a lot of noise. day two after the op the physios wanted to get him out of bed and moving. This was a slow process but once he found his new freedom (and the playroom) it was very hard to get him back into bed. This morning he was firing to go so after a shower and all his pins cleaned dr Pincus told us to go home. We may have to have some more corrective surgery in a week or so but all looks good so far. I am in need of a baileys on ice so I am signing off. I will keep you posted. Love Jo xx

Getting ready for Spacial Frame No. 3!

Reid's leg mended very well after the removal of the last frame. He then went into a hard plastic Kaco brace to protect his leg and thank fully this was a brace from his knee down, so Reid was walking/running/climbing trees/riding his bike to school in no time! We had a wonderful summer. We went to Pa's in Sydney for Christmas and all looked bright and rosy.
Check up with Dr Steadman was scheduled at the beginning of March. He was happy with Reids leg and suggested that he now take the brace off on weekends and start walking around without it.
WOW how fantastic - until weekend two of this new found freedom.
Reid was playing outside with Alex and her friend Jessica. He bent down to pick up a ball and he heard his leg snap and I heard an almighty scream. Three screams actually, the girls were screaming just as loudly as Reid was!! When I saw Reid's leg looking quite out of place I ran to him and sat with him as the girls ran across the road to our wonderful neighbourly Doctor Parkin. Thank God he was home.Dr P had Reids leg back into some sort of place and strapped and in his car and we were at St Vincents emergency within 15mins of the break. Now thats service!!
After an x-ray it was confirmed that not only was the tibia broken but so to was the fibula! We called Dr Pincus in Brisbane, and Reid was fitted with cast No.10! A white one - which everyone signed.
Having another broken leg was devastating as we were about to begin the Easter holidays. We had a camping trip planned out at Aunty Lissa's and Uncle Luke's and then two weeks at the Gold Coast! Thankfully the wonderful staff at St. Vincents put him in a waterproof cast!
After the holidays we had another check up with Dr Steadman and he confirmed what David and I were thinking that Reid would have to have some surgery to fix this crooked leg.
Today we met with Dr Pincus and he has decided to reset Reids' leg Thursday next week (3rd June 2010). He will be re breaking Reid's leg in two places and fitting three rings on a Spacial frame. The last two frames Reid has had were only two rings, this one will require three as there will be two breaks. I will keep you all posted. x

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!!!

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.

Running on the Spot

So much seems to have happened since I last posted a blog, and yet we seem to still have so much to do. Mum and Reid went very well with Chemo Number 11, and I was able to concentrate on Alex and even had the luxury of having some 'Me' time! Alex's little op went very well and the mole came back all clear thank God. She recovered well and was back at school on the Friday. I perhaps was a little mean sending her to school on that day as her cousins arrived from Taroom and Paris and Moree all wanting her to be home! As did her Grandpas from Armidale and Sydney!
Friday the 7th was a massive day. The Benefit dinner date had arrived and all was happening. The girls sold 320 tickets and were all very anxious about how the night would go. IT WAS FANTASTIC! David and I were blown away, so overwhelmed and so immersed in support that it took us several days to come back down to Earth! Everything from the Broncos cheerleaders, Reid's Godfather (AKA Bo-bo the Clown), the poignant dvd (a copy given to every guest), video messages from Marina Prior, and Darren Hayes and Ben Dark, Dave losing his speech, the launch of Clear Day, the auctions, the band, Luke the Auctioneer, and of course the massive amount of money given in support of Reid and Clear Day...how does one ever respond??...or repay. Words are insufficient. We are so loved. We are so lucky.

Reid has had a whirlwind three weeks with heap of visitors form all over the world, his first helicopter ride, being nominated and receiving a Courage Award from the Toowoomba Lions Club, Easter on our boat in Moreton Bay and a day at Movieworld. Unfortunately due to tests etc he was only able to have one day back at school, and his next time at school won't be until next term as his good week falls in the school break.
On the negative side, Reid had a rough bad week with very low blood counts and had to have a Red Blood transfusion as well as a Platelet transfusion. We also had to have a GFR (kidney Test), a CT Scan on his lungs (I get the results tomorrow 26.03.08) and his nose tube had to taken out of his right nostril and reinserted into his left nostril! It had been on that side for too long and was causing nose bleeds, so it neede to be changed. He was soooooo brave!
We are not out of the woods yet. I changed Reid's dressings on his leg this afternoon (Mon) and noticed that one of the pins near his knee is oozing and looks infected. He has some pain which can mean that it maybe infected. We are due to start chem No. 12 tomorrow but this maybe halted if he has an infection. I'm not too sure what will happen but will keep you all posted. I had better get to sleep as we need to be there at 9am in the morning and its now 10.30pm Hope you all had a wonderful Easter, we certainly did. xxx

Four down...four to go

We are now half way through post surgery chemo. Approximately 12 weeks to go. Then we have to get the frame off and have several years of physio...But physio is heaps better than chemo!! Reid handled this last lot of chemo not as well as the one before. His platelets plummeted to 6, and so needed a transfusion around day 8. We went to Brisbane to have this as it timed up with an appointment with Dr Steadman. We were to see Dr Steadman the previous week, the day after we got out of hospital. Valentines Day. This was a dumb idea cos poor little Reid was very tired and still not well so to put him back into a car and drive back to Brisbane was stupid to say the least. He and I got as far as Ipswich and he was very sick all over his clothes, the car etc. Luckily Rich and Sarah are Ipswichians, so I took the first detour and Rich took me out to his place for Reid to get cleaned up and then we made our way back to Toowoomba. Its great having family so strategically positioned!
This break has beenvery good for Reid and he seems to have put on some weight. Although I am still depending on the NG tube for his medicines, and to keep the weight on.
The appointment with Dr Staedman went very well. He was very happy with Reid's walking and his x-ray showed that the fibular has now mended well with the remaing tibia. However he does not want the frame removed just yet, and was quite adament thet the longer it stays on then the stronger the fibular will be when it is finally removed. Reid will see Dr Pinkus (The Ortho who put the frame on) on Tuesday and he will probably adjust the frame to allow some more weight to be felt by bone.
Mum heads down to Brisbane with Reid tomorrow. I am sitting this one out. I am so lucky to have Mum to do this for me, however I can't help feeling a little 'lost'. Mum will handle everything beautifully, I think its just that I have only had one day away from Reid since his diagnosis...but I am now an official spokeman for "Clear Day" a charity that promotes the importance of 'Time Out' so I had better take my own advice and relax!!
Clear Day has been accepted and taken on as an initiative with Childhood Cancer Support. Dani and I are thrilled with their enthusiam to take us on. I will be speaking at Reid's Benefit dinner on Friday nite to offically lauch 'Clear Day' and a lot of the funds raised on the night will be going to 'Clear Day' to get us up and started! I am very proud of this new project, and it is so exciting to see something so fun and good come from such a huge disruption.
No doubt you have heard all about the Benefit dinner being held for Reid and Clear day this coming Friday nite. If not go to the web site www.reidsbenefit.com.au for all the details. David and I are totally blown away with this. A group of close friends of mine (all Mums at school) got together and decided to organise a dinner to help raise funds for Reid's rehabilitation. So far 320 seats have been sold and some amazing sponsorship money has been donated. Its going to be a wonderful night organised by 7 wonderful girls, and we don't know how to thank them enough.
Also this week Alex will have a small operation to remove a mole in her hairline. The doctors are not too concerned about the mole but they do feel that it has to be removed. We will go in to Day surgery on Wednesday and Alex will have a couple of days off school (yay!!) I think she actually wanted the whole week off.... But hankfully Mum will be in charge of Reid and Chemo, so I will be able to concentrate on Ally-pal.
Reid will be spoilt rotten over the next two days. And I feel better already....

Ready for No. 10

Monday 11th February, Reid and I will head back to Brisbane for Round #10. These past three weeks have been fabulous. Reid seems to be getter stronger with each hit of chemo. Its as if his body now knows that there isnt any cancer left and it can handle the chemo easily! (touch wood). Reids blood counts remained above the criteria and so we did not need a transfusion this time, yay! And by the third week, Monday 4th Feb, Reid made it back to school. He was so excited. He lasted for 2 hours on the first day and then on Tuesday, WIN TV came and did a story on him, so that was really exciting too. By Friday, he was up to staying a whole day, but we had physio first so we didn't get to school till 10am. Reid has the most wonderful teacher, Mrs Coman who says that Reid hasn't changed much from last year...still doesnt know when to stop talking! He also has a carer, Kym Murray (funded by Catholic Education) who looks after Reid whilst he is at school. Kym is a beautiful person who has made the seperation anxiety (only felt by me I might add) much easier. I am so indebted to Mrs Debbie Bassingsthwaite from Mater Dei who pushed me to fill in the forms so Reid could be assesed favourably for care. And Cath Ed has been so very supportive with our request. I never realized the support network that was out there. Repeating Year one is wonderful, the children in Reids class know all about him as they watched all his trials and tribulations with the year ones last year from their Prep room. Reid knows a lot of the kids and one of Reids little friends from last year is back again too. Max was fantastic for Reid in these first few days!
Reid is now walking a little more and for the first time in a very, very, long time he took himself to the toilet....I stood close by, but he got there all by himself and back to bed (after washing hands of course) all by himself. He was so proud of himself too.
He knows we have to go back to Brisbane tomorrow, and his only fear is the GCSF needle he has to have before we leave on Wednesday. Bloody Needles. But this needle is so important to the recovery from chemo, so I can't not fight for him not to have it. Its such a clever needle as it tells the bone marrow to start producing again and not to give up. In America each one of these injections costs close to $2000. Here in sunny Queensland this injection costs me $5!! Who says we have a rotten health system??? Reid has had to have 24 of these injections so far, 14 of which I had to draw up and give to him before his Stem cell harvest.
On Friday afternoon we get out of RCH and I will meet Dave at Blacksoil with Reid and then I will return to Brisbane for a meeting with Childhood Cancer Support. I came up with an idea a little while ago to start a charity that deals with granting carers of children with cancer a Time Out. I told the idea to a dear friend I have made since being at RCH and she came up with the name...Clear Day. After many hours Dani and I put together a profile, Anna (my very talented Artistic friend) designed a logo and we presented it to Childhood Cancer Support. They were impressed, and want to know more. They maybe interested in taking us on as a project! I am so excited. The meeting on Wednesday is to iron out a few issues and try to get some sort of plan to get started. Majority of the funds raised at Reid's Benefit dinner will go towards Clear Day. The name came from an anagram of CLAY (Dani's little boy...see past photo) and REID...but we changed the 'I' to an 'A'.I will keep you all posted.
On Thursday we will go back to Brisbane for an appointment with Dr Steadman. Reids' Orthopaedic Surgeon. I am hoping to find out when we can have the frame removed. Once again I will keep you all up to date. I cannot thank you all enough for your support, love, phonecalls, letters and prayers....they seem to be working xxx

Still Going!

Since my last Blog, Reid has had more ups and downs but thankfully more ups than downs! Christmas was lovely. Mum and Dad and Malcolm were here with us. Reid and Alex woke at 5:30am and all went normally to schedule except that Reid had been bitten quite severly by mosquitos two days prior and the bites had turned into massive blisters. All seemed to be ok however we had to go up to St Vincents on Boxing day to have them checked. All turned out ok and the blisters eventually popped. Only one had to be seen by a wound specialist on our next visit to Banksia.
We commenced Chemo #8 on New Years Eve. We got to Outpatients at 9am and commenced hydrations at 10.30am. We got to the ward close to 4pm and by this time Reid had become toally engrossed in some playstation game, so being interupted from it was like chopping off one of his arms! He threw a massive tantrum (of which the nurses are now very used to). Eventually he settled down and chemo started at 6pm. This round of chemo went quite well and Reid kept up his diet of steak, steak and more steak throughout our stay. Kylie from physio came to visit and removed the boot which had been on to support Reids foot, this was horrendous and of all the tantrums and screaming matches I have had to deal with, this was the biggest. I was beside myself and had to leave the room. Reid fears anything new. He had got used to the support so to take it away was like removing part of a security he had been holding onto. I desperatly needed a stiff drink, but seeing as it was only 10am I thought the nurses may frown! Needless to say, Kylie was to have no luck with Reid doing any excercises that day so we headed back to Toowoomba as soon as they gave the dreaded GCSF injection in his leg (another screaming match - and by this time the Cleaning fluid was looking good!!)
Being home has been fantastic. We have filled the days with lots of excercises, visits with friends, lots of playstation and TV but most importantly lots of fun! We even had two nights at Mooloolaba (see Pic). Reid needed a platelets transfusion the first Monday. And this was handled beautifully at St Vincents.
On Tuesday 8th Jan we went down to Brisbane for an appointment with Dr Steadman (the Orthopedic Surgeon). Reid had an X-Ray and all looks good, the bone is attaching itself well and everything is still in the right place. Dr Steadman mentioned that the bones in Reid's feet need some work so he has to start walking a lot more. This has been hard as Reid is still getting used to not having a boot support and everything is sore from not being used.
On Monday 14th Jan we went back to Brisbane for a GFR (kidney test) and a CT scan on Reid's lungs. The GFR requires a canula in Reids arm for a nuclear dye to be injected and then nurses take blood from his central line every hour on the hour for three hours to detect how the kidneys are filtering the dye. Obviously Reid hates needles so David was with him to get the canula in, and Reid was so brave. Alex even had a bet with him that if he didn't scream and make a fuss, she would give him her Tic-Tacs!! I was so proud of her for doing this. However once the dye was put in the canula comes out and I was with Reid for this....basically; I am sure all the staff at Nuclear Medicine in the RBH are very appreciative for having been given such a loud vocal start to their week! And Alex got her Tic-Tacs back! Reid is soooooo over hospitals. God only knows how we are going to get through this next visit.
The CT scan is to check the spots on Reid's lungs. If there are any more spots we will have to do Radiation at the end of chemo. I will get these results (and those of the GFR) on Monday 21st Jan (Chemo #9).
I am very tired and frustrated. I know we are one of the lucky ones and that Reid's treatment is going very well, but I suppose I have become selfish as I want everything to be back as it was. In between Surgery and Chemo #7 Reids Eyelashes and hair started to grow back. I was so excited, but this was short lived cos as soon as that bloody chemo took affect, they all fell out again. I have met some wonderful people, and made some life long friends. But I would selfishly say I could trade it all to go back in time and not to have had to ride this road. No child should ever be sick, and no parent should have to endure this form of torture. I feel so frightened for Reid and yet so Strong that we are over the worst. I am fearful but hopeful. I feel alone but comforted that I have so many people praying and sending lots of positive thoughts our way. This emotional turbine is taking affect on all facets of our lives. My relationship with David is turbulent, my love forAlex is forever stong,although I sometimes doubt my commitment. This is also true with my many friendships. I miss so many times I had before Cancer that I can cry quite easily just reliving the memories.So with allthese emotions twisiting my head I have decided to get some counselling next time Reid and I are in hospital. Reid's temper and fear needs to be addressed as does mine.
So Reid and I will head down the Range on Monday (21.01.08) for Chemo #9 and hopefully all going well will be back up the Range on Wednesday! Lots of Love xxx

Its Christmas!

I didn't send one Christmas card this year, and of all the years that I should have this was it. So I apologise for the lack of stamped greeting and can only offer you all my love and heartfelt thanks for everything via the good ole internet...very impersonal.
Reid would like to pass on his thank yous to all his friends and all the adults who did lots of prayers for him, cos' they worked!!
Now for the update, Reid walked for the first time yesterday since May! He had the aid of a walker but he took the steps, held his weight and moved approximately two meters. David and I are so proud of him. We have been goiong to Physio three times a week since we have been at home and the sessions have obviously paid off.
Mum and Dad and Malcolm (Dave's Dad) will be here for christmas and we are so looking forward to having a really relaxing time with them.
Reid and I will head back to Royal children's Hospital on New Years Eve to have Chemo #8. We will be in hospital for two nites and three days then we come back home again. Hopefully Reid will handle this next lot of Chemo as well as he did the last one. He only needed one Platelets transfusion!
I would like to wish you all a very safe and healthy holiday break, lots of love and a wonderful Christmas. Love Jo xxx

New Old Address

We no longer have an address in Brisbane...well for the moment anyway. we went back as planned on the 3rd December and started Chemo No.7. Dr Tim said to us that all going well he could see no reason not to go Home when chemo was finished on Wednesday. I said "Do you mean Home Home??" and he said "yes", well I was a little shocked with this news and expressed my concerns with Reid being neutropenic, etc and he said that we would be able to handle it and we could liase with St Vincents in Toowoomba for blood counts, transfusions as needed. Well this was new.Reid was pretty sick for Monday and he slept most of Tuesday. However as soon as we had the dreaded GCSF injection 3pm on Wednesday we were out of Banksia and on our way back to CCS (our Unit). On Wednesday we had an X-Ray just to check how Reids Leg was looking, now these are pretty scary pictures. Thursday we had an appointment with Dr Steadman (Reids main Orthopedic Surgeon) who said that he was pleased with how Reid was doing but he wants him up and walking for Christmas. Reid burst into tears, as he is absolutely petrified of walking. He organised us to meet with Noelle Coleman the following week, a nurse at RCH who specialises in Frames and pin care (Reid has 12 pin sites in his leg - 6 actual pins). On Friday we packed and cleaned the Unit. We also went up to the Hospital as it was Party day! This is a day the hospital does every year and each of the wards has to decorate themselves to a particular theme. This year Banksia did "A Fair Dinkum Christmas" and won the award for best child involvement, we built a Ute, a Bar-B-Q and a few surfboards. Reid wasn't too helpful but some of the other kids had a ball. reid's school had had a fund raiser to go towards a party for the kids and some of the funds were used on this day. Every child I saw this day was grinning from ear to ear.
We made a new friend this time we were in and it helped us realise how lucky we are. Josh and his Dad came in on Monday night with suspected Lymphoma. Josh was very chatty and full of beans, a wonderful little boy who instantly won my and Mum's hearts. I could not help compare him to how Reid was at that stage of his road. As it turned out on Wednesday he was told that he did have Lymphoma and started his chemo journey straight away. What a Christmas they are about to have. So here we are on the road to recovery and here is a little 5 year old boy just about to start his. No child should have to endure this s--t!
We got home to Toowoomba late Friday afternoon and spent the weekend unpacking...holy smokes did we have some stuff!
Monday I knew that Reid would need a blood count done, and just as I was talking to Sullivan and Nicolaides to come around and collect blood Reid had a nose bleed. It was very heavy and lasted half and hour. This is a tell tale sign that he is low on Platelets. S and N came round and did a finger prick test (as they are unable to acess Reid's central Line and there was no way in this world that Reid was going to let them give him a needle)they sent the blood off to the lab and we made our first return day trip to RCH. When we got there we headed to Orthopedics to meet Noelle (the Pins Expert). She was an Angel, and showed me how to care for Reids pin sites relatively pain free,(I had endured the last three weeks with being abused on a daily basis, as the care I had been instructed to do was unnesecsary). We then went up to Banksia and had a Reids' Central Line care done and he was hooked up for Platelets. This only takes and hour, so as they were being done, Kylie (our Physio) came to outpatients and got Reid standing for the very first time on his good leg since the op. He screamed the place down but felt triumphant with his achievement. We headed home exhausted.
Wednesday (today) 13th December, Reid, Alex and I made our second pilgramage to the Big smoke. Today we had to have a blood count done again at 12pm which came back ok, considering he had another nose bleed this morning I was quite surprised. We then went down to Physio to see Kylie for some more hard work to try and get Reid up on his feet. He spent the first half an hour screaming his lungs out saying he couldn't do it and that he was scared; that time seemed to stand still. I was beside myself with anger, frustration and panic...eventually through sheer determination Kylie and her wonderful assistant Kate got Reid on his foot....still no weight bearing on his bad foot but at least we got him up.
We then went over to the Wesley to see Dr Pincus (The Orthopod responsible for the frame). He spoke directly to Reid and showed him how strong the frames were by standing on one in his office. He jumped up and down on this meatl thing in his RM's and even had me convinced! He then also explained to me that normally, kids are given time before an operation to get used to the fact that they are going to have one of these frames and that usually prepares them for what lies ahead. Whereas Reid woke up after the op expecting to see his leg in a cast and to his horror saw a "Transformer" attached! This fear will take sometime to work with, but he now knows that he has to walk on it as soon as possible so that he can get the thing off! Ihate the saying...but it really is "one day at a time..."

The Next Chapter

Being home has been the best thing for both Reid and I. And I am sure the time that Mum has had back at Tullimba has rejuvenated her too! Dave, Reid and I went down to Brisbane last Thursday to have a check up with Dr Theile (the Plastic Surgeon) and with Dr Tim (the Oncologist) to get the plan for our next emotional ride. Both Specialists were happy with how Reid is recovering. His wounds are healing well with only one site of concern on his bad leg. This is a operation blister that is still healing, however we are going to go ahead with chemo and watch the blister closely.
Alex has been so good for Reid and their little relationship seems to have grown. Yes they still fight and call each other names but Reid adores his big sister and askes her to stay home every day to play with him. I am sure she would prefer to stay at home too but she has missed so many days this year that I just felt she needed to end the year on a strong note. Despite all the upheaval she has had she has done really well with Grade three and is so excited to be moving into Grade four next year.
Chemo Number 7 starts Monday (3rd December) 9am. This next 8 lots of treatment is not as intense as the last 6 ; with only 2 and a half days of chemo instead of 3 and a half. Thats about the only difference. The blocks are still 21 days long, so our next block is due to fall on Christmas Eve...but Dr Tim said we will put it back to the 27th December so we can have Christmas at home! Yay!!! Reid will have to have another CT scan on his lungs at some stage to make sure there isnt any spots so radiation has not yet been ruled out.
Mum and Dad arrived yesterday and Dad will head back today. Mum, Reid and I will leave home early tomorrow morning to beat the traffic and begin our next chapter. Hopefully all going well we should be finished by June??!!! Please keep all your prayers and positive thoughts constant. I will keep everyone posted. xx