Tummy troubles

Well, the counts have finally started going up slowly (HORRAY)! Austin has been having a lot of stomach pain over the last few days, so the doctor ordered him an ultrasound yesterday. The results of the ultrasound came back okay, so there does not appear to be any major problems. The doctor has ordered a new medication called Pentopazle which hopefully will settle and minimize the acid in his stomach. It is excruciatingly painful every time Austin throws up, so he is given morphine when needed.
Initial results from the lab show that his intestinal tract infection (c-difficle)has cleared up. However, they are doing a few extra tests to be sure before they officially "clear him" and take him off the antibiotic (metronidazole) used to treat the infection. I'm hoping that once some of the antibiotics are reduced, the nausea will subside. Austin's system has really taken a beating this round, and he doesn't have the energy to do much more than sleep. We have had some nice talks together, though, and we did a little Canada Day word scramble together today.

Waiting for the counts to recover

Austin has been resting peacefully for most of the day. His stomach was upset, so the nurse gave him a couple of anti-nausea medications to help. The meds do make him feel better, but they also make him very tired! It appears that Austin may be having some of the c-diff symptoms again (vomiting, diarrhea). I don't think they can be attributed to the chemotherapy treatments any longer so I have to wonder - what is next?!

Austin had another platelet and blood transfusion yesterday that caused a minor reaction. He has also been put on a new antibiotic for another possible infection. Austin's counts still have not recovered from chemotherapy, and he is day +8 post-transplant. The doctors don't seem overly concerned (unlike me - but all mom's probably worry more than we need to). The staff all agree that his body may take longer to recuperate this time around because it has already been "blasted" with so much.

Spirits are down on ward 8B at SickKids today (Austin's "home" for the last few months). Some of our "little fighters" lost their battle last night - it happened all so quickly and all at once. I cannot begin to imagine how horrible it must be to lose your child. In addition to these tragedies, the boy across the hall from Austin, who has the exact same brain tumour and exact same treatment protocol, went down to the Critical Care Unit (CCU) last night after a terrifying code blue (the child had stopped breathing and their heart had stopped beating). It is so scary because it is hard not to think - will it be Austin next time? One day they seem fine and the next moment they are desperately fighting to remain alive.

One day at a time

It has been exactly six whole months since that horrible day when we found out that Austin had a brain tumour. I remember things as clearly as if it were yesterday. As I type this blog entry I glance up at the clock and think about what was going on at this time on December 23, 2006. Austin and I had just arrived at SickKids in Toronto via air ambulance - we entered an unknown world that has now become our safe haven of hope and our second home. It is hard to believe that it has been so long. I guess when you live "one day at a time" dates really don't mean that much.

Austin is doing much better today. His white blood cells "bottomed out" today at less than 0.1, so we just need to wait for those stem cells to kick in and work their magic. Austin has had (only) one platelet transfusion so far, and he is down to eleven IV medications (at the moment). He ate one small slice of cantaloupe today and drank a bit of water, as well. I know it doesn't sound like much, but it is better than nothing. Small steps.

Six months have passed - one more day is done.
One step closer until this is all behind us.
Still taking things one day at a time.

A better day

As I initially suspected Austin does indeed have a severe infection of the digestive tract known as clostridium difficile (c-diff). Long-term antibiotic usage is the primary cause for developing c-diff, in combination with a long hospital stay and a suppressed immune system (Austin had all the cards stacked against him for this one!) Ironically, the treatment for this infection is yet another powerful antibiotic called Flagyl - it just seems like a vicious cycle! Well, at least the worst is now over, and Austie is on the mend. He played Zelda on the game cube today, which surprised me considering how sick he has been. His temperature is 36.8 again (no fever) and his diarrhea is almost all gone. We are looking forward to maybe getting a half-decent sleep tonight. Austin's transplant went really well today, and he had an uplifting experience with the Demerol that they gave him before he got his stem-cells (if you want to see what stem cells look like check out the picture above). It was so cute because he said he felt like "he was floating in the clouds."

Another tough day

Austin still has a high-grade fever (104 F/ 39.8 C) that has been present for the past two days. I have a feeling he may have caught some type of viral infection which has given him the stomach flu. In addition to the high-dose chemotherapy (which makes him sick to begin with) he is having a really rough go this time around. I honestly have never seen anyone so ill in my entire life! The past two rounds of chemotherapy have left Austin very weak and this just seems too much for his little body to handle right now. At least tomorrow is a "day of rest" and hydration before his transplant on Tuesday. Hopefully this bug will work its way out of his system before too long. However, one of his antibiotics have been cut for fear that it will contribute to further hearing loss....... hopefully it isn't the one that he needs to combat this infection!!
As a result of the non-stop vomiting and diarrhea Austin requires concentrated amounts of potassium, phosphate, and magnesium which have been given throughout the day via his central line. This additional concoction adds heart monitors to the equation which is yet another alarm to beep beep beep through the night when his heart rate or rhythm fluctuates. We'll see what tomorrow brings. Please say a special prayer for Austin tonight, and send along some words of encouragement if you have a chance so I can read them to him.
Oh yeah, Happy Father's Day to all the dads out there!!

A rough start

Austin began his third round of chemotherapy yesterday and he is well on his way to filling up his second string of Bravery Beads. Austin was given a Bravery Bead necklace at the beginning of his cancer battle with his name on it. When he undergoes difficult treatments, such as surgery, radiation or chemotherapy, he is "awarded" a special plastic, glass or wooden bead to commemorate his journey along the road to recovery. Austin hangs his "string of courage" on his IV pole (he certainly wouldn't be caught wearing a necklace!).
So far, the chemo has not brought on any blood pressure fluctuations, breathing difficulties or shaking (like previously seen) - but he has been horribly ill! He has not stopped throwing up since his first dose of vincristine, amifostine and cisplatin yesterday. He also has had very bad diarrhea which, in turn, has messed up his electrolyte levels. He received more chemo today in the form of cyclophosphamide, which has continued to cause him great discomfort. His anti-nausea medications are not having any effect, so the nurse just gave him some gravol to help him get to sleep (which is the only comfort he really has right now). Austin also got a high fever this afternoon, and is on 3 different antibiotics to combat whatever it is he may have contracted. The fever is still rising and he cannot tolerate Tylenol in his stomach which would help alleviate the fever. Apparently, IV acetaminophen is available in the US, but has not been approved for use in Canada - go figure. Austin's TPN and lipids have restarted (after some persistence from mom who had to ensure he received a 24-hour infusion of "hot dogs in a bag" - as we like to call it here at the hospital).

Back into the hospital

After an early morning pulmonary functions test Austin enjoyed his last afternoon out of the hospital. He was re-admitted at 3:00 this afternoon for his third round of high- dose chemotherapy. We are getting a bit closer to "the end" of treatment, however, Austin is quite weak and has lost more weight than I ever imagined was possible. Not only has he lost every ounce of fat on his tiny frame, he has virtually no muscle mass left either (from being confined to a hospital bed). He eats next to nothing and literally looks like a "walking skeleton."
We are now nearing the 6 month mark since Austin's brain tumour diagnosis. It is so hard to look back on all that has happened to Austie. I hope that he never has to live through this hell again. I can't believe that a whole year will go by before we can say good-bye to all of this and resume a "normal life." I remind myself, though, that as bad as things may be some days, things could be worse. I need only look around at some of the other suffering children and families that may never return home with their child - I thank the Lord that Austin has been given the chance of survival.

Ronald McDonald House

Austin was discharged from the hospital on Thursday as scheduled, and has been at the Ronald McDonald House since then. He has managed to remain fever-free and is drinking fairly well. He is not eating much at all, though, so he may need to be re-admitted a bit earlier than planned. The home-care nurses have taught me how to hook and unhook Austin's IV line, and how to flush and heparinize his central line. This makes things a bit easier because we don't need to schedule things around a nurse visit every morning and night. It is so nice to be away from the hospital for a little break and Austin seems to enjoy sleeping in a regular bed. Scott is down visiting for a week, and we took Austin for a long walk today to the park (we are all tuckered out now from all the "fresh" downtown Toronto air).

A break from the hospital?

There is "talk" that Austin may be discharged from the hospital to the Ronald McDonald House tomorrow (however, we are not getting our hopes up like we did last round). He is doing very well, and is off all medications and antibiotics as of this morning. The doctors have discontinued Austin's TPN and lipids, so hopefully he will begin drinking and eating on his own instead of being fed intravenously. Home care is being arranged for Austin while he is out of the hospital, because he will require overnight IV hydration.
Over the last few days Austin has had a series of tests to see how damaging the chemotherapy has been to his kidneys, heart and hearing. I have not received any feedback on the results of these tests, except for the post-audiology test where I made detailed inquires into Austin's obvious hearing loss. The audiologist explained things to me, and basically, Austin has sustained significant hearing damage that is beginning to affect the "speech range" used for daily communication. Fortunately, options are available after his cancer treatment, such as hearing aids, to help him along the way. Austin also had a MRI two days ago, and the preliminary results show no new tumour growth in his brain. He has a lumbar puncture scheduled for tomorrow, as well. The LP will (hopefully) confirm the MRI results that indeed the cancer is not spreading throughout his central nervous system.

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?