Live Action

It's the last day of May, and Austin is busy with his math lessons. He's wide awake and doesn't have any major procedures scheduled. He's also been mastering the art of playing his new Wii game machine. Makes for a good exercise program.

Austin's World



Here's a little video to give a different perspective on the daily activities around here.

Another restful day

Austin woke up in good spirits this morning and was very talkative. The nurse informed us that he would require another platelet transfusion, which surprised me because he received a blood transfusion and platelet transfusion yesterday afternoon. His haemoglobin went up to an adequate level, but his platelet count still remains dangerously low. This morning Austin was given some routine antibiotics, a dose of Benadryl, and a bag of platelets. It's too bad that they have to give him so much Benadryl all the time, because it makes him sleep for hours on end! This can be a good thing when Austin is ill, nauseous or in pain, but it puts a damper on things when Austin is happy and ready to take on the day. So ....... here my dad and I sit by his bedside for the afternoon while he sleeps. At least he knows we are here when he wakes up (which is usually only when he needs to go to the bathroom or the nurse comes in to do his vitals).

Post-transplant

I haven't posted anything on the blog for a few days, because Austin has been playing his online games non-stop (I was so happy at first because he was actually doing something instead of sleeping all day)!! However, I had to limit his time on the computer today, and he was not happy about that. Instead of playing a game of Monopoly with his Grandpa and I, he decided to go to sleep instead. I guess it goes to show you that Austin is doing well enough to give his mom a bit of attitude. Despite the odd tummy ache, Austin is very content and comfortable. He still has not regained his appetite, so I will work on getting some liquids down beginning tomorrow. His blood counts "bottomed out" yesterday, and he is severely neutropenic at this point. Hopefully he won't catch any little bugs this time around. Austin also required a platelet transfusion yesterday, which went very well without any bad reactions.
It seems that post-transplant Austin is doing better than last round. However, it could be that we know what to expect at each phase of the 28 day cycle. The unknown can be very scary, so I think there is some comfort in knowing Austin is repeating the exact same regimen he has already undergone.

Transplant #2 Complete

This round of chemotherapy seemed to hit Austin a bit harder than last round. He experienced very bad stomach pains which was relieved somewhat when he vomited. He sleeps most of the time and is not mobile at all due to the discomfort he has. Austin had his second stem-cell transplant yesterday. He tolerated it very well and seems to be doing a bit better today. We are going to have a "Simpsons DVD Marathon" today thanks to our friends in Red Deer, Alberta who sent a wonderful care package to Austin complete with his favourite shows and PS3 / DS games (thanks Sue)! Scott left yesterday to go back home to Longlac after staying in Toronto for a few days. It was so nice to have someone here to visit and help out. Austin's grandpa is flying to Toronto today from Thunder Bay to visit for a couple of weeks, and he has been given clearance to visit Austin in isolation ( I will just have to teach him how to get all "suited up and sterile").

A rough start to the 2nd round of chemo

The last couple of days were busy, as Austin had to complete some tests before starting his next round of chemo. It is nice to have his grandma and grandpa here for a visit, although they have seen very little of him because of visitor restrictions on his ward (no visitors allowed!!). However, they were able to accompany us in "the waiting game" during Austin's eye exam and hearing test. The hearing test has shown some high-frequency hearing loss - but nothing overly concerning at this point. We also had a visit from Shelly and her daughter Danica (who has completed treatment at Sick-Kids for a Wilms tumour). Austin is not feeling very well, though, so he does not like leaving his room. This makes visiting short and difficult for him to do as he has to actually go out of the ward to see anyone. Of course this is only when he is not in an isolation unit.

Today marks the first day of Austin's second round of chemotherapy. It began with the cisplatin bag of chemo breaking and leaking during infusion, which caused a bit of a panic on the ward. Today was a bit more difficult compared to first round, as Austin experienced some breathing difficulty and a drop in blood pressure. He also had a spike in fever which put him right back on antibiotics. Austin's TPN (IV food) was restarted today because severe nausea from the chemo drugs does not allow for any nutritional intake on his part. He even throws up (bile) when he hasn't eaten, which is very unpleasant to say the least. He is on 4 different anti-nausea drugs to try and make things more comfortable for him. This high-dose chemotherapy really is horrible - I would never have imagined it would be this bad!!! I can tell when the drugs hit his veins because of the way his body reacts. Hopefully tomorrows chemo will be a bit easier for my little soldier (so he can keep fighting and destroying those cancer cells)!!!!!!

Shelly and Danica visit

Not leaving the hospital

On Mother's Day Austin was allowed out on a day pass away from the confines of his hospital room. We attended a brunch at the Ronald McDonald House, which was a real treat. In the morning Austin practiced swallowing "candy pills" to make things easier with oral medication intake. He began by swallowing tiny sprinkles, then medium sized cake decorations, mini M&M's, and finally some tic-tacs. He was so proud of himself! I was so relieved that he was able to overcome this obstacle - it will really make a huge difference in the long run now that pills are an option in his care plan (as opposed to liquid meds - YUCK!!!)

Unfortunately, on the day Austin was going to be released from the hospital (Monday), he sprang a very high fever. His fever is getting higher as I type this quick blog entry, and I have never seen one so high (his whole little body is red). He has been put on IV antibiotics and is taking steady doses of Tylenol to keep his temperature down. Hopefully the antibiotics will work to kill the virus in his system and bring down the fever before he begins his next cycle. It looks like he will not be getting out of the hospital in-between chemotherapy rounds this time.

Weekend pass!

Austin has fully recovered from his engraftment syndrome, and is no longer itchy (which is a huge relief - the little guy can finally get a good nights rest!) He has been completely taken off his IV food and only requires 12 hours of hydration at night. Austin has had a great deal of trouble keeping down his required oral antibiotics (a safety precaution) and will be attempting his fourth new type of antibiotic medication. I guess the doctors are hoping they will find one that will not make him vomit instantly. I don't blame Austin for not being able to keep down this stuff - I have tried it and almost threw-up myself! Unfortunately, Austin is allergic to the "standard" penicillin medication, so he has to take the really "yucky stuff" as an alternative.

The last couple of days have included an echo cardiogram, a pentamidine inhalation session (to protect Austin against pneumonia) and a pulmonary functions test. His kidney function was also assessed yesterday, and we are waiting for vision and hearing tests, as well. These tests are to determine if the chemotherapy has done any damage to his system. There will be more extensive tests after round two of chemo.

Austin is very anxious to get active again - and was excited to tour around the hospital a bit (he insisted to take the stairs instead of the elevator - and was sore the next day). We played some football in the halls, and went for a wheelchair ride outside. Austin also visited his friend Sarah yesterday, who is staying in the hospital, as well. Austin received day passes for the weekend, so today we went to the Toronto Botanical Gardens and to the park. I am so glad that Austin will be out of the hospital for most of Mother's Day - what a wonderful gift for us both!

Celebrate!

We had a party for Austin yesterday to celebrate the completion of his first round of chemotherapy (complete with balloons, streamers, presents and cake). It was a great celebration!!! He truly had a wonderful time, and was happy to be transferred to a "step-down" room. It is much more roomy and comfortable. He is now receiving steroids to help overcome a very uncomfortable rash that the doctors are referring to as (possibly) engraftment syndrome. He becomes unbearably itchy and is taking maximum doses of Benadryl that provides some relief. He has not had a fever for a couple of days, so I am hoping the antibiotics will stop soon. He is beginning to eat a bit, as well, which will help to get him off the TPN (IV nutrition). If all continues to go well, Austin may get out of the hospital for a break before beginning his next round of chemo.

Austin Shines!

Things are really looking up for Austin! We have discovered that Austin has set a new record at SickKids as being the first child out of isolation 10 days after transplant! He is a real fighter, to say the least. I am so proud of how well he is doing and can't believe round one of chemo is already finished - as scary as it was - IT'S OVER! Austin is beginning to walk a bit, but is quite stiff and sore after being confined to a hospital bed for the last month. He now has a bit more energy, and is playing some video games and board games. His drinking has increased and he is beginning to nibble on a few chips. His morphine has been decreased to the point the doctors were able to eliminate it completely. If he stays fever-free and increases his fluid and food intake, Austin may be able to go to the Ronald McDonald House (with daily nursing care) in a few days!

Step Down!

Yesterday Austin had another platelet transfusion, and has developed a head-to-toe rash that is visually quite severe. Nevertheless, the rash doesn't seem to bother him at all. Dermatology came to visit and prescribed him with a couple of creams to apply regularly. Austin was officially classified as a "step-down" patient today, but there are no step-down rooms available at the moment, so he will remain in his isolation unit until a room opens up (they are much more roomy and include a private bathroom). Austin has now finished his first round of chemotherapy, and just needs to recover from the treatment. He also needs to begin eating and drinking so that he can get out of the hospital for a few days before his next round of chemo begins.

ONE ROUND DOWN...... THREE TO GO!!! HOOOORAY!!!!!

Blood Transfusion

Austin received his first red blood cell transfusion today because his haemoglobin count dropped to 68 (a normal count for Austin was around 140 previously). He had a slight reaction to the blood, and developed small rashes on his body. He also had more platelets given yesterday (platelets are important because they help to stop bleeding, and haemoglobin is crucial as it carries oxygen to the body). Austin is doing super today, and he is beginning to drink more fluids, which is very encouraging. He now has a sticker chart in his room to help "motivate" his fluid intake. He gets 1 sticker for every 50mL he drinks.
We played a game of operation today (Austin won - as usual), and "worked in" our new baseball gloves - in anticipation of a speedy recovery and break from the hospital.

I tried doing some magic tricks for Austin, but instead of "amazing" him, I made him laugh a lot (at me)..... hey, what are moms for, right?