Help towards Alex's funeral costs.

Hi, My name is Alana and I am fundraising for an absolutely awesome boy that I met named Alex!

 

I met Alex and his mum Joanne in October 2020 in Randwick Sydney children's hospital where both our kids were being treated for Leukemia.

 

Alex is an amazing guy with a great funny loving nature. He is a massive fan of MARVEL, Star Wars and of course LEGO!

 

I am fundraising for Alex as sadly he is losing his cancer battle and I would love to make some of his bucket list wishes happen for him and also to help Joanne as financially the cost of hotels, food and coffee... lots of coffee is costly!

 

Joanne has wrote down Alex's Leukemia journey which I will share with you below.

 

 

Alex was diagnosed with T-cell ALL (Acute Lymphocytic Leukemia) 12th June 2020. He was 12 years old. The week leading into his diagnoses we had noticed he was bruising very easily, had very little energy and become quite pale. He went to see his GP at 1pm, he had a blood test straight after, at 8.30pm we received a phone call from our GP to go straight to local hospital and pack an overnight bag. We said a quick goodbye to his brother and said we would see him in the morning. That was the last time Alex was home for 6months.

 

When we got to emergency they were waiting for us, we thought it was great, straight in! How often does that happen...sadly it wasn't so great. The doctor started talking about white blood cells and red blood cells, I asked are you going to say the L word, he said yes. HECTIC! Alex received his first (of so many) blood products that night. We got an ambulance drive to Sydney the next morning (we live 3hrs away).

 

From there everything seems a blur, but you eventually catch up to it all...and sadly become a PRO at it. We were told that Alex would have to stay in hospital for a couple of days, head home for a few days and then come back to Sydney to start iv treatment on a month by month basis with a couple of weeks between protocols where we could get home for a bit this would take approximately 6months with 18months of maintenance treatment after, which is basically oral tablets at home with a trip to Sydney every month. Treatment for Leukemia is generally treated as an outpatient (you come to hospital for treatment through day, home at night, or for us hotel up the road).

 

Alex didn't get home for his mini break, didn't get time to breath and absorb it all, didn't even get out of hospital at this stage. Honestly, I'm not even sure what the docs were looking at, I don't know what they need at the preliminary stage, as treatment had not started, but they deemed he had to stay in hospital. Oh, we were also told that Alex was going on a "high risk" protocol which means more iv treatment in Sydney, so we were now up for 12months, after initial treatment, we would have additional high risk stages. Each high risk protocol (there are 3), would require 1 week in hospital, 2 weeks at hotel and maybe one at home. He would also require more Lumbar Punctures with intrathecal chemotherapy inserted into his spine because he had a lot of cancer cells in his spinal fluid and sitting on his brain.

 

Leukemia kids do get ongoing Lumbar Punctures (take a sample of spinal fluid with a small needle) and Bone Marrow Aspirates (take a sample of bone marrow out of hip bone with a bloody big needle) under general anesthesia to make sure they remain in remission (clear of cancer cells) during treatment.

 

Eventually treatment did start and he was still an inpatient, he also managed to get Pneumonia, he got really sick pretty quickly. Alex spent the first 3 months in hospital, the docs were concerned as his normal cheeky effervescent personality had become quiet and withdrawn. They finally got him well enough to let him out of hospital, but only to a hotel up the road and because he had Pneumonia he was on iv antifungals, which meant a daily 2-3 hour trip to hospital every day, thankfully the hospital was only a 5minute walk away because he was in a wheelchair at this stage (he had become so weak) so I didn't have to attempt to get him in and out of a car.

 

Did I mention this was in the middle of Covid? If you think Cancer or Covid is hectic, try doing them together and then multiply it by Childhood Cancer. It's also the reason we had to stay in a hotel and not Ronald Macdonald house. The cost of the hotel was significantly larger that Ronny Macs, but Alex has a brother and we were not willing to sacrifice visitors. Alex's Uncle and brother would visit every second weekend, his grandparents every other weekend. His grandparents would only come up for a day trip as Alex's grandfather has dementia and it was just too confusing for him.

 

Alex managed to get 2 weeks out of hospital, which he grew stronger, and his cheekiness returned, but after that, he was in and out. He started his high risk protocol in October, but in true Alex style, didn't get 1 week in 3 weeks out. The docs always pushed hard to try and get him discharged and he managed to get one night out before he had his second high risk protocol. He got to watch footy in the hotel with his Uncle for his Uncles birthday, well, he fell asleep in it, but he was happy!

 

After the second high risk protocol Alex got pretty sick again, he ended up with pancreatitis from one of the chemo's, the docs tried pretty hard to get him home for his year 6 farewell, but it just didn't happen. They did however get him home for Christmas (Alex's absolute favourite day of the year), he got the all clear at 3pm 23rd December...YAY! He was still in a wheelchair, super weak had lost a mountain of weight (12th June weighed 57kg...23rd Dec 43kg), his face was super puffy from all the iv fluid intake, but his body was looking like a skeleton!

 

For the next 2 months Alex got a break, we were able to finally get some time at home and travel to Sydney once a week or fortnight, he was put on maintenance chemo tablets to give his body a break. He even managed to be home for his 13th birthday and go to his new high school and although we still had to go to the local hospital every day (which is 35 minutes one way) for his antifungal treatment because he still had fungus in his chest from pneumonia he was happy...oh....and found a whole new bunch of nurses to give a hard time too (his cheekiness knows no bounds).

 

Mid February we returned to Sydney for a Lumbar Puncture and Bone Marrow Aspirate so we could finish the high risk blocks. Alex was looking great, still thin, but getting fatter and his face was no longer puffy, he was happy and cheeky and ready to get going again!

 

We were told that Alex had relapsed, the Cancer had returned mid treatment

, he had to have a Bone Marrow Transplant. When Alex originally got told he would be on high risk protocol, they asked his brother and myself to get tested to be a possible donor, as it can take up to 6 months to process, just in case. 1 in 4 chance of a sibling match...and his only brother matched!

 

So the process began, you need to be back in remission (clear of cancer cells) before the transplant can happen, so he was getting Lumbar Punctures with triple intrathecal chemo twice a week under general anesthesia with iv chemo as well. Once he was back in remission the BMT (bone marrow transplant) process begins....lots of appointments and scans. His brother has to get new blood tests and so on.

 

Then comes the BMT, the week before is more iv chemo and TBI (total body irradiation) for this he literally gets taped down to a bed, an extremely heavy pad (like a baseball home plate) gets put on his chest and they irradiate him for 20mins each side...yes...he gets flipped around half time! The whole process generally takes just under an hour and he gets this twice a day for 3 days. He is buggered, with all the iv chemo and then radiation, its extremely taxing on their bodies. His brother has his operation to remove his bone marrow and Alex gets his brothers cells the next day, after they are processed. For me, I get to have both my boys with me overnight.

 

They say having a BMT is like running a marathon 24/7...that's how much work your body has to go through to reproduce and accept the new cells. Alex didn't do too badly through BMT and I mean, he didn't end up in ICU like most of the kids do. Luckily for us, Alex had a sibling match and a 10/10 match at that! BMT process takes 100 days in Sydney...Alex managed to get out of hospital around day 80..we had 3 weeks in the hotel before we could head home. On the plus side...due to BMT...he was now on much stronger antifungals which would also cover the fungus in his chest, so he no longer had to go to hospital every single day...on the down side, Delta hit a week after his brother donated his cells, so we did not see any family for the 100days...it was harder than the first 6months and really hard on his brother too.

 

You can imagine how happy we were to get home to his brother and it seemed life was looking great. After transplant there is no more chemo, no more blood or platelet transfusions, just 3 weekly visits to Sydney to see docs. A couple of months later and they even removed his central line (cord hanging out of his chest into which iv treatments and blood products are given). Finally he could swim again and have a proper shower! He was looking forward to going to school on a full time basis again!

 

Then the headaches started...in November 2021...3 weeks after his central line was removed and just shy of 6 months post transplant...Alex was told he had relapsed again. This time there was no cure. The cancer was aggressive and was in his CNS (Central Nervous System) his spinal fluid and sitting on his brain again..it was also present in his bone marrow, but in minute amounts, it would eventually return, but could take weeks months years.

 

The docs wanted him home for Christmas, so they started Lumbar Punctures again with triple intrathecal chemo twice weekly...the plan was get it to zero and then two more and return a month later, but he had a small seizure...they didn't want to push him...so they managed one more Lumbar Puncture to get him to zero and sent him home.

 

We got home for 3 weeks, then back to Sydney, the cancer had already come back...so we started spending week days in Sydney and home on weekends. Two Lumbar Punctures a week, but the Cancer was winning the battle and then he had another seizure, bigger and longer this time, he was non-verbal for several hours. It was the methotrexate (one of the chemos).

 

They continued the Lumbar Punctures with double intrathecal chemo now and started anti-seizure medication, but the double was not working, so they started doing triples again, but the cancer cells were winning the battle. They decided to do radiation again, but were limited because he has already received so much.

 

He has now had 7 rounds of radiation to his brain...not as intensive as last time, they make a mask that gets bolted to a table and he receives radiation for 5-10mins at a time...finally we are home...for a full week, but time is limited.

 

The docs told him a couple of months ago to start checking off his bucket list, he has just had his 14th Birthday, but Covid doesn't make it easy and honestly he has spent so much time away from home, he just enjoys being home. The one things he loves more than anything is LEGO...it has got him through his lengthy hospital stays, hotel time and waiting for his brother to get home from school. If he is not building it, he is watching YouTube about it. LEGO (and the builds that take him longer than an hour to build) is so expensive...but it is all his bucket list is....

 

LEGO

Millennium Falcon

Imperial Cruiser

Titanic

New AT-AT

Death Star

Paintballing so I can shoot Alana

 

Thank you for reading and thank you for donating!