Month: October 2015

Kaden had a pretty good night last night & was due across at the hospital again early this morning for another blood test. We hope that today’s blood tests will show a significant improvement in his numbers & tac level. 

With each day, Kaden is getting better at walking & is having more of an interest in playing more physical games such as hide & seek 😀 

Liam has been very good at school & even got a prize today for getting 10 stars & winning a game. 

A massive thank you go’s out to everyone attending & who have spent endless hours organising & donating items for tonight’s fund raiser in Pakenham, you are all truely amazing & we can’t thank you enough. 😃  

Below I have added some fun photos 😃

    
   

Kaden enjoyed his weekend at the apartment even tho we didn’t venture out. He was feeling pretty average last night & this morning running a low fever, but has now improved & is asking for something to eat 😃

On Monday, Kaden was booked in for a blood test, as usual he was a superstar getting it done. Yesterday afternoon we received the call that his tac level had dropped again & that we would need to increase the dose. Some of Kaden’s levels have improved, however there is one that just doesn’t seem to want to budge and until these levels are all good, they will not let us go home to Perth. Our gastro team with be talking with our surgeons to see if they can come up with a reason & solution to this issue. 

Kaden is booked in for another ultra sound on Tuesday & will be going under on Thursday at the adult hospital to have his stent reviewed. This procedure will tell them if it is able to be removed or if another one will need to be put back in. 

  

Kaden has been able to catch up on some much needed sleep over the last few nights. With each day his diarrhoea has been improving along with the tummy pains he had been having. 

Kaden has also been interested in eating again & has found a new love of honey soy chicken 😀 

This afternoon, we received the exciting news that after 51 nights in hospital, the doctors decided it was time to discharge Kaden 😀 They will still be closely monitoring him with bloods to be taken early on Monday morning & will let us know the next move after that. 

  

Last night was the first night in a long time that Kaden & I were able to get some sleep at the same time 😀

Unfortunately, Kaden is still experiencing quite a bit of diarrhoea which is making him feel pretty average. Today he has spent most of the day watching movies & playing on the Xbox with Liam. 

Today’s blood work showed that Kadens numbers have climbed up. The doctors are not able to pinpoint exactly why this is happening as it could be caused by a number of things like the chemo, being neutropenic etc. They have decided to change his formula concentration to see if that will help settle his tummy & get him back on track. 

  

kaden had a much better night last night. He is still experiencing some tummy pain & requiring some pain relief & buscopan. Last night they stopped the IV fluids & antibiotics so that has given him a bit more freedom. He’s walking much better now that the pain in his foot has eased. Still no word on when they will be able to discharge him from the hospital, it will all depend on what his drug levels & numbers do.

Today was another sunny day in Sydney. We decided it was time to get Kaden riding his bike again & took him outside with his occupational & play therapists. The boys had a fantastic time playing a bullseye game together. It was awesome to see them laughing & playing, it’s the simple things in life that are the best 😃

  
   
   
Every day Kaden is getting more & more hair, here’s an updated pic. 

  

As of tonight, Kaden has spent 47 nights in a row, in the hospital. This has been very challenging & sometimes it’s hard to see an end in sight, especially after the constant set backs this week. I hope with this new week coming, that Kaden improves in leaps & bounds & that he will be able to be discharged 😃 

Today Kaden had much better day. Although he still remains very tired from being neutropenic, he has only needed pain killers twice today, instead of the many times yesterday. He still has had quite a bit of nausea & hasn’t been interested in eating anything but we’re sure this will improve in the next few days.

We would like to thank everyone for their ongoing support. It means so much & is helping us get through what has been an extremely hard year.  

Kaden has continued to have a rough time. On Friday, his biopsy was cancelled again after they discovered that Kaden is now neutropenic (no immune system) and was also spiking a temperature. As normal protocol they started to administer antibiotics on top of the meds that he was already having. Not long after being given the antibiotic, Kaden started to complain of stomach cramps. A stool sample was taken & today we were told that he has an infection caused by the antibiotics he was on, so they have now added another antibiotic on top of those ones. Our poor little fella has been in so much pain & there’s only so much of the pain meds they can give him. We hope the new antibiotic works quickly & that he’s feeling better tomorrow. 

Kaden has still be feeling pretty miserable the last few days and has been struggling to get any rest at night time. His foot has continued to give him quite a bit of pain which has been limiting his ability to get around. On a better note the cream prescribed by the dermatology team has been doing its job and helping to clear up the rash and the itchy symptoms.

We have been advised that Kaden will be having a biopsy tomorrow, as this will help give the doctors a clear indication on why Kaden’s numbers are taking so long to get down to the levels that the doctors would be happy with. The nurses and doctors have reassured us that this procedure is quite common after the type of surgery Kaden has had and should only take around an hour. We are hoping that if Kaden’s numbers continue to improve, that they will discharge him over the weekend so that he can come and stay with us at the apartment. 🙂

Liam was awarded a special prize at school this week which he proudly showed us at pickup. Although he is missing his friends and school back in Perth, he has settled quite well into the school at the hospital and is having a great time socialising with the other kids.

While we have been on this journey, we have met so many amazing and strong parents along the way. One mum who I have met while we have been in the hospital was so lovely and took the time to sit and comfort me while I was having an emotional moment. She also introduced me to the wonderful adults colouring books, which have been a great distraction, giving Lee, Kaden and myself a way to zone out and be creative.

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 🙂