Author: leemcdevitt

On Wednesday, Kaden will be given vincristine, the last chemo drug for this round, being round 7. This drug in particular has caused Kaden to loose a significant amount of strength in his legs. Kaden went from being a happy 7 year old winning races at school, partaking in weekly swimming lessons, playing Auskick in the winter time, running around the park and swimming at the beach with his friends to struggling to walk a couple of metres. As a parent this is heart breaking to see, however we know that to get Kaden better, this drug needs to be given. Over the next few months, we will be working closely with a physio so that we can help Kaden achieve his goal of running again. Today was our first appointment with the physio. At the beginning of the appointment, Kaden was not willing to co-operate, he was very grumpy from the ‘finger prick’ (blood test) and had the mind set that the physio wouldn’t have any toys or activities that he would be interested in. After a bit of a discussion and convincing, Kaden eventually gave in and went to investigate. Much to Kaden’s surprise, he found gym equipment and with the help of his physio, created a circuit which he then decided to do. Watching Kaden take it in his stride and climb the equipment without delay was awesome!

I know we say this often but we want to again thank everyone for their ongoing support and help that we are receiving 🙂

While here in Sydney, we have decided to make the most of our free days and explore as much as possible. After doing a little bit of research, we discovered that we could purchase a 5 attraction pass that allows us to visit these  attractions for only $10 each, what a bargain!

• Madam Tussauds
• Sea Life Aquarium
• Tower Eye
• Wild Life
• Manly Sea Life.

Today we decided to check out the aquarium. We caught the train into “Central Station” and then another train one stop to “City Hall Station”,after a short walk we arrived at the aquarium.

We all had such a great time. There were so many different sea life to see, sting rays, sharks, octopus, sea horses, turtles, penguins and so many more. The boys were in awe of the glass tunnel walks where they got to see the fish up close, especially the sharks with their super sharp teeth. When asking the boys what they liked most, Kaden said he liked the sharks and Liam liked the “Dory” fish (fish from Nemo cartoon) 🙂

Today was a big day all round. Lee and Kaden ventured up to the local shops and picked up a cake for Liam’s homecoming as well as  attending a meeting with the liver transplant co-ordinator. We are aiming to have Kaden officially on the transplant list anywhere from next week onwards. There’s been lots of tests done and more to go to make sure that the liver Kaden receives is the perfect one! We’re slowly getting closer to having our boy healthy again, as you can imagine, we can’t wait to see Kaden running around, enjoying life and being cancer free!

Today I flew down to Melbourne to pick up Liam. To see Liam’s smile and be able to give him a hug was truly the most wonderful feeling. We have missed Liam so much and to see the boys back together again has brightened our world significantly. They had a huge cuddle when they first saw each other and Liam has been more then happy to do anything that Kaden asks him to do, such a gorgeous site to see.

SPECIAL THANKS

A massive thank you go’s out to our wonderful family and friends for being so supportive while we have been on this journey. Although this journey has been so hard to understand and come to terms with, without the support of our family and friends, it would be so much harder. We are truly great full for all that you do for us, from the daily messages of support and encouragement to everyone flying around Australia.

A special thanks to everyone that has looked after Liam while we have been settling in, here in Sydney. Knowing that he was looked after and loved so much has been a huge weight off our shoulders. Thank you so so so much xx

After our late night visit to the Emergency Room the other night, we have kept this weekend pretty quiet. Kaden has been busy watching Pokémon, playing the Xbox and we even managed to convince him to play a board game or two today.

We’re back into the hospital for Blood tests tomorrow, I believe this will be for the AFP level as well as part of the workup for the transplant.

Yesterday afternoon, Kaden developed a rash on the back of his head that was starting to spread down his back. He didn’t seem too bothered by it until late last night when he began to get itchy. Just before 1am we called the oncology team and made the trip over to the hospital to get him checked. Unlike WA who have the oncology clinic in the same area as the ward, if the kids from oncology here are sick, they have to go to Emergency which we weren’t too excited about. However when we did arrive the nurses from the ward had already called down to Emergency and we were brought into an isolation area away from all the other sick kids. After about an hour the doc came and looked Kaden over, she was happy that the rash didn’t look to suspicious as he wasn’t showing any other signs such as fever etc. We finally walked back in the door around 2am all very tired and ready for bed.

After catching up on some much needed zzz’s, Kaden was ready to hit the road and get out for a while. He was keen to go to a play centre, however to us those places are breeding grounds for germs so that was out of the question, much to Kaden’s disgust. Having to restrict Kaden from places like this and explaining why is just one small part of this cancer journey.As you can imagine he gets very frustrated with the restrictions but again its part and parcel of keeping him as germ free as possible. Instead we were able to negotiate and go to the movies during school hours to again avoid as many people as possible. We went and saw Fantastic 4, as great as Marval movies normally are, this one let the team down. But on an up side it’s always good to get out and about!

Up until now, we have kept this blog pretty sheltered from specific details of what has happened with Kaden, and only showing the positive steps along the way. However, we now feel that we are ready to divulge more details about what this journey is actually like. Please do not take offence to what you will read, as this is the reality of what it is like for a child to suffer from cancer.

We have been here for 19 days so far! On initial arrival to Sydney we were under the impression that we would be here for a couple of weeks, however we were quickly informed that this was not the case and our stay in Sydney would be for a minimum of  3 months. As you are aware Kaden underwent major surgery on his lungs to remove tumours that had not dissolved already with the chemo. Before we left Perth, we were aware that Kaden would be having surgery on his lungs, however we were under the impression that it would be done via keyhole. Our impression couldn’t be further from the truth. They had to make two 10cm incisions under each shoulder blade giving the surgeons enough room to work with to explore his lungs. Although this was an extremely important step in Kaden’s requirement to get onto the transplant list, the fear and pain we felt while waiting for the results was unmeasurable. We were so relieved when the surgeon called to advise that the surgery was a success, that we both had trouble putting a sentence together, we were just so eager to go and see our son. We were able to see Kaden in recovery where he was able to talk to us and tell us what he needed before they moved him into ICU. We took shifts during Kaden’s night in ICU each needing some time to rest but ensuring our son always had someone by his side as we had done throughout this journey. As you have read on previous posts, Kaden was a superstar and recovered fantastically! As much as he hated us for getting him up and moving around (important part of recovery) he realised that moving made him feel better. Times like that where we could feel and see Kaden’s resentment towards us pulled on our heart strings but as parents, we stood united knowing that this was a necessary step to get Kaden’s recovery on track, especially building the strength in his lungs to avoid pneumonia.

Once Kaden had recovered enough, the oncology team felt there was an urgent rush to get Kaden back on chemo to ensure that the cancer was kept under control. The type of chemo Kaden has been on, has caused Kaden permanent significant hearing loss and also strength in his legs (we have been told his strength in his legs will return), however as we are constantly reminded, we are fighting a disease and these losses are part and parcel of the chemo.

Before we began this round of chemo, we were told that Kaden had to have blood tests on Monday morning. As Kaden’s port (the thing that is under his skin where they put a needle into to take blood and administer chemo) was not accessed, Kaden would have to have blood taken out the old fashioned way, through a vein. For you or I, this would not be a big deal but for Kaden who had to endure several of these already on Friday and throughout this journey, this was something that he really did not want to do. Watching our son beg and plead with us not to allow the doctors to do this broke our heart but it is a necessary evil in the fight against this cancer.

Yesterday we both had a blood test done to see if we were a match for Kaden, just in case we were needed to donate part of our liver to him. Unfortunately Finn is not a combatable blood type, however Lee is. Lee will undertake several tests over the next few weeks to see if he is able to donate part of his liver to Kaden if a donor liver is not available in time.

Today we met with Kaden’s surgeon to discuss Kaden’s operation and give formal consent. As expected, the surgeon had to give us all the possible complications that could happen during Kaden’s transplant (ie blood loss, too much protein being created causing brain damage, having to leave his incision open after surgery allowing the swelling on the liver to reduce in size before taking Kaden back into surgery to close him up), if Lee is to be a donor (possibility of not surviving the op) and also the possibility that after all this, there is no guarantee that Kaden will not get cancer again. If Kaden did get cancer again, due to the immunosuppressant drugs (stops the body from rejecting the liver), they would not be able to treat Kaden any further. Lee and I decided that this was a no brainer & that we would go ahead with the transplant as this is Kaden’s best shot at beating it. There has been many tears shed today and along this journey, but we pick ourselves up and get on with it as it is what we have to do.

On a lighter note, we are making the most of the days that Kaden has out of hospital and exploring Sydney. We have attached some photos of our time here in Sydney so far.

Yesterday we met with Kaden’s surgeons. What we thought was going to be key hole surgery has now turned out to be major surgery. They will be making an incision on either side of Kaden’s back to access his lungs to make sure there is no living cancer left. If any cancer is found, they will cut it out. Without this operation & confirming all the cancer is dead, the doctors can not put Kaden on the liver transplant waiting list. Once the surgery is completed, Kaden will be placed into ICU to ensure his pain is managed. This operation is booked to take place around lunch time tomorrow.

Due to the change in the lung operation & Kaden requiring a transplant, we will now be staying in Sydney for months instead of weeks!

We are slowly getting our heads around the operation’s & Sydney being our home for a while but like Lee & I say, this is just the next step to getting Kaden healthy & cancer free.