Author: leemcdevitt

Kaden has had a very rough few days. He started his post op round of chemo on Thursday and was doing really well. Then on Saturday he hurt his foot going up some stairs and as a result has been in quite a bit of pain. The doctors did an x-ray and confirmed that it was just bruised and would take a few days to heal. If  being on chemo and in pain with his foot wasn’t already bad enough, Kaden also developed a nasty rash all over his body. Since Saturday he has been extremely itchy and although the doctors stopped some medications they thought may be causing the rash, and tried multiple oral drugs and iv drugs administered through his port, they unfortunately were not able to  ease the itchiness. Kaden spent most of his nights in the shower as this is the only thing we could find that could give him some relief from the itchiness. Kaden’s rash kept multiple teams of doctors and nurses on their toes trying to find a solution to stop the itch. This afternoon, the dermatologist team were able to administer two types of creams, and finally Kaden has managed to get some sleep. 🙂

This week we have been able to bring Kaden out of the hospital during the day. This has given us all a well deserved break and a bit of freedom from being stuck in the hospital isolation room. It has been so good to be able to relax and feel like a ‘normal’ family. As Kadens antibiotics was stopped today, they even let Kaden stay out till 8pm, so we were able to enjoy dinner together. One thing this journey has taught us is that its the simple things in life that are the most important and enjoyable 🙂

During the week, the boys have spent a lot of quality time together playing the xbox and watching the new tv series we found for them. We are hoping that next week, with the doctors approval, we’ll be able to start taking the boys out to the local park or even a little bit of site seeing. 🙂

Kaden has been getting stronger and stronger, today we were able to see a weight gain on the scales from all the fantastic eating that Kaden has been doing. Not only are we seeing an improvement on the scales but Kaden is also displaying strength in his legs and upper body and is enjoying riding the bike around the hospital and across to the apartment.

Yesterday we were given the go ahead for Kaden to start the next round of chemo. This round will run for a total of 5 consecutive days. We have arranged for the chemo to take place in the mornings allowing Kaden to continue to leave the hospital during the day.

We have not yet been given any indication on when we will be able to return home. There is still some tweaking to be done with Kaden’s medications and also to ensure that Kaden is handling this round of chemo ok.

Thank you to everyone who has responded to our request for assistance in finding Kaden some new tv shows to watch 🙂

We hope you all have a fabulous weekend 🙂

Earlier this week Kaden was feeling pretty miserable, like all of us he is eager to go home to Perth. We have been trying to keep him busy and distracted as much as possible to help pass the time. This week, the boys helped build a paper mache volcano, then excitedly got to see it erupt using bicarb and vinegar. The boys had a great time painting the volcano, it’s always so good seeing them play and create things together.

On Friday, Kaden got a special surprise when he returned to his room after a ride outside to see it was decorated in the Hawks colours, a special thanks go’s out to Craig, Georgia, Kayla and Alanna for the decorating 🙂

On Saturday morning, the doctors seeing that we’re pretty big Hawks supporters, decided they would let Kaden out of the hospital for the day to watch the mighty Hawks. We were all so excited to have Kaden back at the apartment and to feel like a normal family again 🙂 We only had one small slip up with Kaden’s feeding tube coming out but I go to snap this gorgeous photo of him before they put it back in, such a handsome boy 🙂

At the current count, Kaden is on 8 different daily meds and one other 3 times a week. We’re hoping that some of these drugs will be removed soon and that he will only have to continue to take one or two. A positive side effect of one of these drugs is that it helps increase your appetite 🙂 Over the last few days, Kaden’s appetite has been amazing! He is discovering that he likes a lot of the foods that he use to which is great, as it encourages his body to get into the normal pattern of eating food again rather then relying on liquid feeds to sustain his weight. Lee and I are eagerly waiting for Kaden’s boost in eating to start showing up on the scales 🙂

Pokémon, Digimon & anime cartoons.

Kaden has taken a huge liking to these type of cartoons. If anyone has any old seasons of these shows or other cartoon anime they no longer use or that we could please borrow to help keep Kaden occupied that would be great and very much appreciated, as we are having trouble tracking these shows down in the shops or on line 🙂

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.

Lately we have all been feeling the frustration of being in Sydney and missing home and our normal surroundings, so today we decided to make the most of the beautiful weather and enjoy some time out and about to boost our spirits. We decided we would go see “Madam Tussards” and the “Wild Life” park at Darling Harbour! The boys had a fantastic time exploring all the wax statues and modelling in lots of photos!

At the “Wild Life”, we saw lots of animals such as koalas, snakes, wallabies and even a big crocodile! Overall the boys had a fantastic day and enjoyed everything there was to see.

Kaden’s mobility the last couple of days has been amazing! Yesterday morning he decided to take it upon himself to walk up and down the stairs at our apartment.  Over the last week he was able to make it up & down between 5 & 8 stairs at a time, but yesterday he walked up & down 4 flights of stairs, 4 times! Lee and I couldn’t be prouder! Everyday he is getting more and more confident and of course we’re seeing Kaden’s cheeky side again. 🙂

Much to the boys surprise, they are both enjoying school. Kaden even made a friend today which is fantastic! As the boys are only doing half days at school, it gave us the afternoon to head down to the shops and have a walk around. Kaden and Liam even sat on the seat together.

Due to the wet weather over the last few days, we have stayed around the apartments. This morning Kaden had another finger prick & general check up with the doc. Mid morning tomorrow he will be going for an MRI as part of the liver transplant work up. We’re also a bit excited to see that our big boy has started to grow some hair again as well as eyebrows and eyelashes 🙂

This morning Liam attended the hospital school for the first time & had a great morning. He made a star chart, played outside and even achieved a star to put on his chart for being ‘respectful’ 🙂

The school consists of one big classroom and has kids who are admitted to the hospital as well as their siblings. Today we received the official go ahead that Kaden can also attend this class so that the can catch up on the school work that his class is doing back in WA. Kaden is not too excited about the idea of attending school & having to do work again (besides the homework he does with us) but we’re sure that he will begin to enjoy school again and interacting with kids his age.

This afternoon the boys enjoyed spending time together watching a new cartoon 🙂

On Friday morning, Kaden had an appointment at the oncology clinic at 8:30 for a finger prick to test his blood count, platelets and neutrophils (immune system). While Kaden was at the clinic, he spiked a temp which is immediate admission for antibiotics and fluids. Normally for a fever it is a minimum 48hr stay from the last temperature spike unless something grows during this time, then its normally a week.

During Kaden’s stay at the hospital, he required a blood transfusion. Over the years I had seen the ads on TV, in newspapers and the blood bus parked at our local shopping centre and thought I must get around to doing that, little did i know just how just how important this blood would be. I knew blood transfusions were important for people in accidents, pregnancies, operations etc but never knew how important it is for a child / adult undergoing chemo. If it weren’t for the generous people attending the blood banks, Kaden and many others that require these important blood transfusions would go without. Kaden has received not only a standard blood transfusion, he has also received platelets which were separated from the blood when it was donated. After seeing all this, I booked in a few months ago and donated to help all those in need like Kaden. The overall process was reasonably quick, the only catch is that you can only donate every 3 months. If you haven’t yet considered giving blood, please do, each donation can help at least 3 patients. For more information on donating visit the “Australian Red Cross Blood Service”.

Last night, we were on watch for a temperature spike. In the past when Kaden has the cisplatin round and it has stripped his immune system, it has only been a matter of time before he has spiked a temperature and been admitted back into the hospital for fluids and antibiotics. Kaden’s temperature did return to normal however, it rose slightly again today so we have stayed home for the afternoon as a precaution.

This morning Kaden had his weekly physio, again he was very hesitant in doing the activates set out by the physio. In this session, they had a log swing hanging from the ceiling and about a foot off the ground so it was low enough for kaden to sit on comfortably. He was not keen at all on sitting on this swing as his balance is not what it use to be. The swing is an important part of his physio treatment as it helps to gradually strengthen his core muscles so that he will begin to stand up straight again. While on the swing, he slowly built up the confidence to sit on it by himself and throw some hoops onto a wooden stand, he even managed to get four on at once which he was pretty proud of!. These are only small steps along that way but they are also so important in getting our son strong again 🙂

We have also been taking Liam exploring. We went to the hospital playground where he met another little boy his age. They had a great time together running around and climbing the equipment, it was so good to see Liam having some fun 🙂