Month: September 2015

Thank you to everyone who has updated their profile pic on Facebook to display a gold ribbon or changed their profile pic to a superhero for September being “Childhood Cancer Month” ! It’s getting people talking and awareness out there that will help put pressure on the government to make finding a cure for cancer a priority!

We have had a busy time lately as you may have guessed from the blog being so quiet. Kaden recently underwent three surgeries. During this time, Kaden spent just on a week in the PICU. As you can imagine it was an extremely stressful time for us, however we can’t thank the amazing doctors and PICU nurses that were not only there to look after Kaden but were also a massive support to Lee, Liam & I. As much as Lee and I tried to prepare ourselves before we entered Kaden’s room, seeing our son heavily sedated and watching a machine breathe for him has to be one of the most terrifying things a parent can see. Kaden was surrounded by 13 machines that helped him breathe, tracked his heart rate, blood pressure, oxygen levels as well as administered pain and sedation meds. During the first four days, Kaden was having a lot of spikes in his heart rate and blood pressure. One of the doctors concerns was that  this may have been caused by seizures and sent him down for a MRI scan. Knowing our son was still so vulnerable and watching him being wheeled out of ICU and down to the next level where the scan was, was extremely nerve wracking, especially when we had to stop suddenly to re-stabilize Kaden, before entering the lift. We were so relived when the scan came back clear 🙂 While Kaden was sedated, we talked to him, reminding him of how much we loved him and of how proud we are of him, it was amazing to see his heart rate and blood pressure settle when he heard our voice and knew that we were there with him.

Kaden’s second surgery was 4 days later. The following day, the doctors decided it was time to start reducing the sedation meds and waking Kaden up. Lee and I were excited that Kaden was finally waking up, but there was one person who was even more excited and eager to see him awake, Kaden’s biggest fan, Liam. Due to Kaden’s high tolerance to medications (morphine etc. needed to ease the pain of chemo), the doctors had to use quite high doses of numerous sedation meds. One of the major concerns with such high levels of sedation is the withdrawals patients go through. Even tho the doctors were very slowly reducing the levels of the sedations meds, Kaden would still experience major withdrawals. Initially Kaden was still intubated until he was able to show the nurses and doctors that he was able to breathe on his own. During this time, lee and I became quite good at reading Kaden’s lips, it was so good to see him tell us he was hungry, thirsty and wanted to watch his Ipad 🙂 It was only a few hours later that the breathing tube was out and Kaden was able to tell us what he wanted.

It wasn’t long after that we realised that Kaden was starting to have significant withdrawals. He was hallucinating and kept asking the same questions over and over again. He wanted to sit up, lie down, move from his left to his right and back again, wanted his legs massaged then would ask you stop and 2 seconds later would ask you why you stoped, this continued non stop for the next 24hrs until finally he was able to get some relief and fall asleep. As previously stated, seeing Kaden attached to so many machines was terrifying, watching Kaden go through withdrawals was a whole new type of terrifying. By the time Kaden finally fell asleep, Lee and I were exhausted and able to get a few hours sleep too. The following morning Kaden woke up as the boy that we know 🙂 Over the next week Kaden did still experience some withdrawals such as tremors and twitching but thankfully they stopped.

As the week progressed, we were happy to see the machines gradually reduced as well as the removal of the many cannulas that had been placed in Kaden’s hands and feet and the central line that was in his neck. Before we knew it, the week was over and Kaden was able to be moved onto the ward. Kaden was on the ward just on a week when he had to have his third surgery. The surgery took around an hour and Kaden recovered very well.

On the ward, we still experienced some hairy moments, especially when Kaden’s heart rate dropped quite low. The doctors advised us that these drops in his heart rate were mainly due to the sedation meds that they were still weening him off. While these drops were happening, the nurses were performing daily ecg’s on Kaden’s heart as a precaution.  As time went on, Kaden’s heart rate improved and he was able to be removed from the 24hr monitoring. Kaden is still on quite a few meds, some of them he has to take by mouth which he’s not too impressed about but is learning to accept it.

Since being on the ward Kaden has come along in leaps and bounds. He has enjoyed watching movies, playing board games and playing the xbox with Liam and dad. The physio and occupational therapists have been great, encouraging Kaden to get up and moving as well as playing some fun games. This week Kaden and Liam even got to make slime and also did a science experiment with bi-carb, vinegar and food dye. As a special bit of encouragement for Kaden, the hospital have even lent Kaden a bike to help strengthen his legs. Every day we take Kaden out of the ward and into the hospital corridors for a ride. This has brought all of us a lot of happiness and laughs along the way, especially when we see our boys playing and racing down the corridors 🙂

Kaden has also started to develop an appetite again and is trying lots of different foods. 🙂

A special thanks go’s out to our family for their ongoing support and for flying over to Sydney to help us while we have been on this journey, and to our gorgeous friends for your daily messages of love and support, you have all been truly amazing and we can’t thank you enough.

We would also like thank everyone for the gifts that have been sent over to Sydney and Perth including the amazing Hawks blanket made by Tracey that took so many hours to create, Kaden has had it on his bed non stop.

Oh and one last thing … “GO Hawks” 🙂

The last couple of days the boys have been back at school which has helped keep them busy. They have been doing painting, making lava lamps for science, doing arts and crafts and lots of other fun activities. It is taking the boys a little while to settle in but with each coming day they seem to be warming up to the idea of being back at school.

Kaden is getting stronger and stronger each day. He is still tackling the stairs and even managed to do a little run inside the apartment with a big smile on his face. This is a huge improvement on the strength in his legs and balance 🙂

The beginning of September has brought a lot of mixed feelings as it is international childhood cancer awareness month. It is so important to get the word out there that there needs be more funding for childhood cancer to improve treatments and lesson side effects, however it also brings up those fears and feelings that you can normally push aside to be able to face the daily battles.

Before this year, we really had no idea just what it was like to have a child with cancer. We have watched Kaden undergo countless procedures that no child should ever have to experience or even know about. Throughout this journey we have met many parents and children with all types of cancer, brain, kidney, bone, liver and many more. Cancer does not discriminate with age or race and as mentioned previously, treatment is extremely harsh on their little bodies and the side effects are frightening. New research and funding is urgently needed, please spread the word and show your support for the fight against childhood cancer by signing the petition on www.thetruth365aus.org and displaying the yellow ribbon where you can.