Home at Last!

Well, the day has finally come. Lindsay and Austin arrived home in Longlac early Friday evening, after a day long trip from Toronto that began at 6:30 am. Thanks to Scott's dedication and excellent driving skills, they made it back safely, and in amazingly good time. Their Internet connection box hasn't arrived yet, so this is Austin's grandpa doing the honours for this blog update. Grandma and myself were in Longlac for the past few days, and were there for the long awaited home-coming. We're back in Thunder Bay now, where I'm writing this little blurb. Wednesday's lumbar puncture results indicated no sign of any cancer cells in Austin's spinal fluid. This is as good as it gets, folks! Needless to say, we're all pretty happy about this news. Austin is in excellent spirits, and enjoying his new digs. His Play Station is really getting a good working out on the BIG screen. This afternoon, he went for a stroll in the yard with Lindsay and Scott, and enjoyed some barbecued steak, with ice cream to follow. Weather permitting, they may try a little fishing as well, this weekend. As mentioned in the previous blog entry, there are still many trips to Toronto scheduled, for follow-up tests and procedures, but today is a major step in Austin's journey to full recovery.

Finally going home!

Austin and I have dreamed about this day for months now......... going home! I am so happy that I can share this wonderful news with everyone (yes.... that's you) who has religiously checked this blog site to get the latest on Austin's progress. The even better news? - Austin is going home CANCER FREE! The preliminary results of Austin's MRI show there is no new tumour growth in his brain or spine. The doctors will further review and compare his previous MRI's to this latest one - but on first examination it looks like there is nothing to worry about right now.
Austin had a lumbar puncture this morning. This is done regularly to ensure that there is no cancer cells in his spinal fluid. He is pretty sore from the procedure, and is having an afternoon nap right now. It still amazes me how incredibly cooperative Austin is with the nurses and doctors. He never complains, or screams or cries. I honestly have no idea how he stays so calm and collected when he knows a giant needle is getting jabbed into his spine. He is so much stronger than I would ever expect him to be.

Austin - mommy's little solider.

We hope to head home this Friday for 12 whole days! Austin needs to come back to Toronto for a physiotherapy assessment, clinic visit, blood work and IV Pentamidine. Austin still has a lengthy road to recovery - but we hope to get him on track before he returns to school in January. Back home in Longlac Austin will have a home care nurse visit weekly. I am able to manage the maintenance of his central line care (flushing, hepronizing, changing dressing/caps) on my own, but will have a nurse pop in regularly. The doctors want to keep the CVL in for 2-3 months post-transplant. It provides easy, pain-free access for blood work, transfusions and antibiotics in case of emergency.
Well, I had better get packing - it is amazing all the things that you accumulate in a few months! Scott should be arriving here tomorrow to take us home in his truck. We are trying to avoid crowd exposure on a commercial airline flight until Austin's immune system recovers.
I will keep you posted!

Love those counts!

Austin went to his regular BMT clinic appointment today. His counts are really improving, which eases everyone's mind, and improves spirits greatly. A final MRI appointment has been booked for this coming Saturday. This is an end of treatment check to ensure the chemotherapy has been successful, and that there is no new tumour growth in Austin's brain or spine. Austin also has a lumbar puncture booked for next Wednesday, along with another dose of pentamidine (to prevent pneumonia). There is talk of going home - initiated by me, of course (I honestly think these doctors would keep us here forever if I didn't persist). Because we live so far away from Toronto, they are a bit apprehensive to let Austin go. However, before we leave, arrangements will be made, in case of emergency, in both Geraldton and Thunder Bay.
Today brings thoughts of how blessed both Austin and I have been throughout this whole ordeal. Austin has fought so hard and been through so much. Thank God he has made it. On the other hand, I am saddened to think of the children we have met along the way whose journey has ended differently than Austin's. Although relapse is a word I will always fear, I cannot live with the thought that Austin will ever have to go through this again.
Right now we have our fingers crossed that Austin will stay healthy and fever-free, which will bring us another step closer to going home!

Clinic visit update

Austin went to BMT clinic this morning. He has lost a full kilogram since last week - which isn't good. He either needs to start eating more real food, or he will have to increase his meal replacement supplement to 4 cans a day (he drinks 3 now for breakfast, lunch, and dinner). His platelet count also dropped down to 34 (a "normal" platelet count for an individual is between 150-400), so he is still very low. However, the doctors decided not to transfuse him today because they think his body is producing some platelets on its own. The idea is that between now and Friday we will see if his counts increase or decrease. Always a continuous waiting game around here..... now hoping those stubborn platelets will start multiplying!
Austin's friend Brian came over today to play a few matches of Yu-gi-oh (a dueling card game).

Enjoying time away from the hospital

The last few days have brought on a whole new way of life for Austin and I. After 4 long months in the hospital (most of them in a tiny isolation room), Austin was finally discharged from the Bone Marrow Transplant/Immunology Unit at SickKids hospital!! Although we will spend a fair amount of time in the hospital clinic every Monday, Wednesday and Friday, we do have a taste of freedom while in semi-isolation at the Ronald McDonald House. Austin's immune system is still very weak, so he does not leave our room, except to go to clinic. This suits him just fine, because he really doesn't want to be exposed to any nasty viruses that would send him back into the hospital. Isn't there an old saying that prevention is the best medicine?
I am beginning to understand how this whole outpatient/clinic thing works.... and I don't much care for it. On Friday Austin went to clinic at around 10:30am to get a CBC (blood work) to check how his body was recovering from the four rounds of high-dose chemo he just completed. It wasn't surprising to hear that he would need another platelet transfusion, due to a critically low platelet count. Honestly, I have lost count of how many transfusions this will now be. The doctors have told me that platelets are the last thing to recover after a bone marrow transplant, so we are anxiously awaiting for Austin to begin producing his own platelets. Anyways, back to my little story. After waiting in clinic for 4 hours, we were told to make our way to the daycare centre where the transfusion would take place. We arrived at daycare to learn that the blood bank did not have platelets to send for Austin, and we ended up staying at the hospital until 9:30pm (when all was said and done). If you have been doing the math that is 11 hours in clinic, which makes for a really long day! Luckily, Austin's counts were great today, so it only took 4 hours in clinic today to let us know that. He will probably need to get another platelet transfusion this Wednesday, and the doctor told me Austin has been added to the outpatient single-donor list. Hopefully, there will be a fresh bag of platelets set aside for Austin's arrival to clinic on Wednesday. Of course, our hope is that he won't need another transfusion at all. If we have learned anything during the last 9 months here in Toronto - it is patience.
My dad arrived in Toronto on Saturday, after spending a few days in Longlac helping Scott prepare the house for Austin's arrival. I can't say exactly when we will go back home, but I anticipate spending a few more weeks here in Toronto before the doctors will allow Austin to leave for Longlac. Anyways, things are coming along with the house preparations. Our entire place has been striped of all carpets, the walls have been primed with disinfectant/sealer, the air exchange system has been cleaned with the filters changed, and all the rooms have been thoroughly cleaned. I also purchased an air purifier for Austin's room (although I am sure the air back home is much better than the smog that we breathe here in Toronto). Although the house doesn't look the greatest (I can only speculate, as I haven't seen it since March) it sure will be clean and the best environment for Austin - next to being back in a reverse isolation unit - that is. And hopefully he will never have to go back into one of those.

Now back to our brutal game of "Risk" world domination.

Recovery Progress

Well, things seem almost too good to be true. There is talk that Austin may be discharged tomorrow from the hospital (I am trying not to get my hopes up too much, though). I suspect that once the regular staff doctors return from their long weekend off, they will debate whether to send Austin to the Ronald McDonald House or not. Although he is drinking very well and keeping in some calories (thanks to a medical meal supplement called Resource that is specially formulated to maximize calories, fat and protein - along with all other essential nutrients) he still needs platelet transfusions every 2 or 3 days. Apparently, this can be done as an outpatient at clinic visits (which will be 3 times/week). The goal is to get him out of the hospital - he has been in for such a long time.
Yesterday Austin was walking down the hallway of the hospital and he fell on the hard floor and bruised his hip. He is working really hard to get his legs working again, but it is quite difficult. His leg muscles are very weak, and his balance is limited. My little solider is still as tough as nails, though. He keeps pushing forward.
Uncle Richy is visiting right now - and he is a breathe of fresh air! Austin received a 6-hour day pass on Saturday, Sunday, and today - so we have all been hangin' out at the Ronald McDonald House having fun! Yesterday we played an intense game of Risk. Austin and Uncle Richy are playing Ultimate Alliance on the Playstation 3 right now as I type this blog posting. It is so nice to see Austin getting back to himself as he starts feeling better.

Test results

Now that Austin has completed his regime of high-dose chemotherapy the tests and scans begin to determine two things:
1) Was the chemotherapy successful in killing all of the cancer? and
2) How damaging was the chemotherapy to the rest of Austin's body?
Yesterday, Austin went for his first and most important test: an MRI of his brain. Today, the BMT (bone-marrow transplant) doctor came in to tell us that the MRI looked "clear" of any tumour(s). However, the neuro-oncology doctor visited shortly thereafter. He inquired about the MRI, and I explained that, once again, the MRI team did not complete the full MRI of Austin's brain and spine. Also, they neglected to inject him with contrast dye prior to doing the pictures. These mistakes make for an inconclusive MRI. It looks like we will have to go back again for another MRI next week.
Today Austin had a hearing test. Sadly, he has (mild to moderate to severe) hearing loss that is permanent. He will need a hearing aid in the near future. Poor little guy. A small price to pay, though, to beat cancer and save his life.
Tomorrow Uncle Richy (my brother) will be coming to Toronto to visit for a whole week! We are both very excited to see him. Austin has been granted weekend day passes out of the hospital - so we can actually visit with Rich at the Ronald McDonald House. Then, we go back to the hospital to sleepover and get overnight hydration. The plan is to discharge Austin on Tuesday from the hospital to the Ronald McDonald House. However, we will need to remain in Toronto for a while yet until his blood counts stabilize. He will be going to the hospital for clinic a few times a week, which will be gradually reduced over time.

A wonderful day!

I apologize for not updating the blog for a few days. There has been very little to report other than the problems with Austin's platelet count. Today he is receiving transfusion #31. Those platelets just do not want to come up!!! The doctors order single-donor platelets for him, but due to availability, he usually receives a different blood type than his own. Today he got a bag of AB-, which is compatible to his O+ blood type, but I find his platelet count does not increase as much as it would with an O bag. Anyways, enough about that, and on to the good news....... as of this morning Austin is in STEP-DOWN!! We still have to stay in the isolation unit (no beds in step-down), but do not have to gown up and scrub in anymore. Wait.... it gets better ..... five of Austin's antibiotics have been discontinued (Meropenum, Clindamicin, Ciprofloxacin, Flagyl, and Fluconazole)!!!! The doctors had him covered with a ton of IV antibiotics over the last couple of weeks, and did not want to d/c them until he had engrafted. We couldn't be more thrilled that the day has finally come! The list of medication that Austin is receiving is gradually getting smaller. Even his TPN and lipids are being reduced by 8 hours to try and stimulate his appetite. Oh yeah, I almost forgot, Austin ate a Minigo yogurt yesterday, along with several pieces of watermelon and some Powerade!
Today we plan on going for a little walk down the hall to try and get his legs working. Austin is very weak, and is not stable standing or walking. His muscles have become very weak because of the limited movement he has had. However, I am sure that in next to no time he will be "back on his feet again" (literally)!

Shortage of blood products

Austin woke up this morning in a fabulous mood - but that didn't last long. The nurse came in and said that he would need another platelet transfusion (this will be transfusion #25)!!!! Unfortunately, at this point in Austin's treatment his body does not respond well to "pooled platelets" so single donor platelets are now needed for effectiveness. Problem is there are no single donor platelets available at the blood bank today. Wait -it gets worse -not only do they not have single donor platelets to give Austin, but they also do not have his blood type. So today he is getting infused with a seemingly useless blood product that will probably not "take" or increase his platelet count. You don't realize how crucial it is to give blood and/or platelets until you are in the position of so desperately needing them. I urge everyone that has access to a blood bank to give. For the kids here in the Immunology/Bone Marrow Transplant/Oncology Unit it is a matter of life or death.

Transplant #4

Over the weekend Austin had a very high fever (40 C /104.5 F) that did not go away after his regular "team" of broad-spectrum antibiotics were given. The doctors decided to combat this unknown infection (no results yet from the blood cultures) with an antibiotic called Meropenem (often used to treat pneumonia and meningitis). Within 48 hours of starting this heavy-duty antibiotic, Austin's fever broke - which was a big relief!! I suspect he must have had some sort of bacterial infection.
Austin just received his 4th and final stem-cell/bone-marrow transplant. It went very smoothly (as usual). Austin has been so fortunate over the course of his treatment not to run into any major complications (knock on wood). Believe it or not - this is very rare. Children receiving Austin's treatment usually run into some serious problems along the way. (I guess a year ago I would have thought that Austin's problems were very "serious" - isolation, regular blood transfusions, non-stop antibiotics, IV nutrition, constant monitoring of vitals, chemo, fluctuating electrolyte levels, heart/oxygen/blood pressure monitors, tests, daily blood work, etc. etc., etc. - but you get so used to it that it becomes a "normal" part of every day). Fortunately, Austin has never been unstable to the point that he needed to go to ICU during this phase of treatment. Like I said, for most kids on this unit, this is not the case. So I remind myself daily at how blessed Austin and I are in so many ways.
Austin's spirits seem to be up a bit as he is now approaching the end of treatment. It will be a long road of recovery for Austin, and he will need all the support he can get to keep up a positive attitude. Any gestures of encouragement/congratulations/help you can send over the next few weeks would be very much appreciated to help Austin along the way.

Round #4 Begins

Well, we are finally here! Austin's 4th and final round of high-dose chemotherapy is underway! After testing positive for c-difficle, once again, there was some hesitation as to whether we should proceed with the chemotherapy right away. Of course, it is best to follow the schedule of Austin's protocol (we don't want those nasty cancer cells to "regroup"), so it was decided to go ahead as planned. Austin is now back on a slew of medications and antibiotics - which is really nothing new at this point. His first day of chemotherapy began on Friday the 13th (AHHHHHHH)! Actually, everything went well despite the hourly vomiting from the aggressive chemo drugs and antibiotics. He threw up a bit more blood than usual, so he was put on a medication to try and reduce the amount of acid in his stomach. Although it is brutal to watch Austin go through this treatment when he is already so weak, I know the end of this HORRIBLE experience is near. Is that light at the end of the tunnel? I think it just might be.

Out and back again

Austin was discharged on Saturday to the Ronald McDonald House. Scott came down for a visit this weekend, so we all went to the movies on Sunday to see Evan Almighty. It was nice for Austin to be out, although he is very weak and tired. He is still not eating anything which is very frustrating and discouraging. Early this morning I awoke to a beeping IV pump (he gets overnight hydration at the Ronald McDonald House). I noticed that Austin felt quite warm, so I took his temperature which was 39.5 C (anything over 38.0 C for bone marrow transplant patients requires an immediate trip to the emergency room). So...... off we went to the Emergency Department at SickKids early this morning. After seeing tons of doctors/nurses and explaining things over and over again we arrived back on 8B at 3:30 this afternoon with a fresh batch of IV antibiotics. Austin will remain in the hospital until his next round of chemotherapy which is scheduled to start on Friday. However, our BMT doctor came by today and said that, depending on the type of infection Austin has, chemotherapy may be delayed. The only benefit of being here in the hospital is that Austin can be fed through his central line. There is definitely some comfort of being back in the hospital for us both. Unfortunately, because of our hectic morning in emergency we missed a visit from our friend Sheila from Longlac (Sorry Sheila - I hope someone from the Ronald McDonald House let you know what the situation was). Hopefully we can connect sometime next week!

A temporary set-back

My mother always told me growing up that "things don't always go as planned." Well, you sure were right, mom. Austin was sooooo close to getting out of the hospital when we had an unfortunate scare. After a regular hearing test in audiology, and a brief visit with the home-care nurse, Austie was 2 hours away from discharge to the Ronald McDonald House (for 6 whole days)! The doctors thought it was best to "top up his platelets" before leaving. I argued the fact several times that his platelets were well above the parameters within his protocol (and I don't want blood products to be used unless it is absolutely necessary). But of course I am not the doctor so it really isn't my decision. Anyways, 10 minutes into infusion Austin's lips, eyes and throat started swelling up. He had an allergic reaction to the platelets, and started having some breathing difficulties. The doctors and nurses arrived very quickly, and soon we had a room full of people. They gave him an IV push of steroids and Benadryl to combat the reaction. He is breathing fine again but his face looks like a little blowfish (sorry folks, no picture today)! Austin needs to stay in the hospital today and tonight for observation, and will hopefully be discharged tomorrow.

Waiting to escape

Well, this morning started early with a wake-up shake from the nurse. She informed us that cardiology called up and had an appointment time available for Austin right away. So, we stumbled off for yet another echocardiogram at 8:15 in the morning (with no coffee for mom - watch out)! Grandma saved the day - arriving at 9:30 am with a coffee, and stayed with Austin while I ran to the TOYS TOYS TOYS store for some select items to keep Austin occupied. We had a great day together which included an intense Yu-gi-oh duel (Austin's favourite card game), a tub bath (in isolation it's only sponge baths every day), and a game of hospital B-I-N-G-O. Austin won the first game, and picked a remote control car as his prize.

Austin is so close to getting out of the hospital. One problem - he won't eat. I mean he won't eat ANYTHING! He says that everything tastes bad. Now that the doctors have cut his TPN (IV food) in half, his stomach aches with hunger. Still he refuses to eat (although he drinks sufficiently). I think this will be his biggest obstacle to overcome once treatment has finished. Will we ever get out of here?

Grandma flew out of Toronto this afternoon after a two week visit, arriving safely back in Thunder Bay with no flight delays (she flew Westjet - of course). Scott will be coming down tomorrow to stay for the weekend. We sure do enjoy the company - and look forward to seeing Sheila and Grandpa next week.

Things turn around

I hope that everyone is enjoying their long weekend! As much as we were dreading spending our favourite long weekend inside a hospital with Austin suffering, things took a drastic turn around! After starting his new and improved stomach medication, Austin is feeling a hundred times better! No more pain... no more morphine.... and no more antibiotics. Not to mention Austin's white blood counts have climbed and he is in step down (as of yesterday). We even "escaped" from the hospital for an hour and played a little trick on grandma (who is visiting for a couple of weeks) by telling her that Austin had decided to run away from the hospital and go home (she totally fell for it.... she is so gullible). It is nice to see Austie's beautiful smile once again. It turned out to be a HAPPY CANADA DAY after all. We sure are proud and grateful to live in the best country in the world (and thank goodness for the all-inclusive, free health care system available to provide for Austin's amazing medical treatment here at SickKids)!!!

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?

Enthusiasm

For the first time in several days, Austin was actually (mildly) excited that he was able to play his favourite on-line game (Runescape) in the comfort of his hospital bed. I can't tell you how wonderful it was to see him smile! He received another hit of chemo today, which made him feel very sick. He is resting peacefully now and is no longer feeling ill after throwing up. From this point on, we just have to let his body recover enough to get out of isolation. Austin has been very fortunate that he has not contracted an infection during his "immune compromised state" (his white blood cell count is less than 0.1)! I am constantly washing and disinfecting things to ensure everything is germ free - to keep him safe.....hopefully it helps!!

Platelet Transfusion Time!

Austin had his first platelet transfusion this morning. He had no reaction to the plaletets because they were from a single donor. Usually when a bag of platelets is ordered, it is a combination of many different donors all in one bag (much higher risk of allergic reaction). So.....he lucked out this time as the "better stuff" was available. He has not been himself the last couple of days, and does not seem interested in doing much of anything. We just had our first out-of-town visitor, Scott (mom's boyfriend), leave today from Toronto. Austin has quite a line-up of visitors next month coming down, as well, which helps to "break-up" a long period in the hospital. We hope he will have been transferred into a "step-down" unit when they arrive so he can visit with them face to face.

The counts drop

Austin's blood counts have dropped off drasically in the last 24 hours, and he is very neutropenic. Normally, his white blood count should be between 4-10. It is currently at 0.3, which is very low. The doctors came by today and prepared him for a blood and platelet transfusion in the near future (probably the next couple of days). We finally have permanent internet access in the hospital room, and Austin really enjoyed reading everyones comments on his blog (he can now check it every day). I also read him the e-mail comments sent to my yahoo account. If you want to post a comment, and don't have a google account, you can "post" as an anonymous person on the blog. Thanks for all the encouragement and messages of care and concern for Austin!

Food Fight!

Austin had a really good day today, and he stayed awake and alert for the majority of the day. He was quite talkative, and joked around and laughed. We finished reading the novel "Hatchet" together and then had a food fight with the fruit salad he attempted to eat. Although his fever has not returned, the doctors have decided to keep him on his antibiotics, and change the medication for his nausea to something a bit stronger (he is still throwing-up). I hope that tomorrow will continue to be an uplifting (new) day for Austie.

Another Day in Isolation

Today was relatively uneventful, and Austin had a relaxing day. We had a visit from the pharmacist today, and Austin immediately told her to stop from coming in by raising his hand and saying "NO." The doctors and nurses have repeatedly told him about the importance of ensuring each and every individual that enters his isolation room be gowned and washed before opening the sliding doors. The pharmacist neglected to follow the procedure........so Austin reminded her (it was quite humorous)!!!!

Entering Isolation

Austin was moved into a reverse isolation unit today where he received his first stem-cell (bone marrow) transplant. His blood counts are slowly dropping as the chemotherapy drugs take effect, so the isolation protects him from outside infections. Austin has not had any side effects from the transplant as of yet (ie. drop in blood pressure, fever, breathing difficulties, etc..), so things appear to be better today in comparison to yesterday. On another positive note, it looks like his fever has "broke", and the added morphine has taken away his pain & discomfort. He still has no interest in even looking at food, and he told us today that he wishes he could always be fed through an IV, so he would never have to eat again! He literally throws up anything that enters his mouth - but it doesn't really phase him anymore because he is so used to vomiting by now. Tomorrow Austin will begin receiving a drug that helps to rapidly grow new white blood cells, which as a result, helps to repair his damaged immune system.

The Chemo Hits

Austin is really beginning to feel the effects of the chemotherapy drugs and is quite ill at this point. After vomitting some blood up yesterday, the doctors decided to give him a medication to try and stop any throwing-up, which has been partially sucessful. Trying to keep track of all the drugs that go through his IV is a time-consuming and endless task! He has been complaining of double-vision, so the hospital team has decided to cut 1 of the 3 anti-nausea medications he is receiving. As a result of the chemo, he has also developed a very sore throat and sore ears, so they have started him on a steady dose of morphine. Austin's fever is still present, and he is on several different antibiotics. He is not eating or drinking, so he relies 100% on TPN and lipids to sustain him. Tomorrow Austin will be moved into an isolation unit due to the drop in his blood counts (as a result of the chemo), and will receive his first stem-cell transplant.

Another Day of Chemo

Austin developed a fever overnight and has been given antibiotics to combat whatever it is that is causing it. The doctors have taken cultures to send to the lab, but do not receive any results for 48 hours - so they hope that the antibiotics prescribed will work. Today is a repeat of the chemo drug he had yesterday, which he seemed to tolerate quite well. Austin is being very cooperative with all of the hospital staff, and they comment regularly on what a sweetheart he is. Although he sleeps most of the day, when he is awake he is in good spirits.

Day 2 of Round 1

After his first day of chemo, Austin slept most of the time. This morning during some awake time, he was humming some familiar tunes to himself. He is receiving medication to combat the nausea, but it isn't 100% effective. Austin received his next dose of chemotherapy this afternoon, and everything went quite well. He had a relatively good day, and his spirits were up compared to yesterday.

How it went today

Yesterday involved some clowning around, but today things got down to serious business. Austin began the first day of his first round of chemo at approximately 2:30 this afternoon. The drugs are so toxic, the nurse requires protective gear to administer the chemo. It went better than I had anticipated. Austin has been sleeping most of the day. He had some minor shakes when the chemo entered his system, but this subsided after a few minutes. I am hesitant to be optimistic, though, because I have heard a whole lot of horror stories from other parents (when their children received the same drugs). It just seems like today went too well without any major complications... (talk about setting yourself up for unnecessary stress and worries). With the help of my dad, we have set up this blog for Austin with pictures and daily updates on his progress through treatment. I hope you can check in on occasion, and post a comment for the little guy.

Finally it begins...

After an infection developed at the beginning of the week, Austin was put on antibiotics to deal with the issue. His fever slowly went down over time, and he has now been fever free for at least 48 hours. Therefore, Austin will receive his first chemo treatment early this afternoon.

This is a scary time for Austin and his whole family. Your thoughts and prayers are very much appreciated.

Better day today

Well, today was a much better day for Austin. His fever is slowing going down, and it is hoped that his chemotherapy procedures can begin on Thursday. Meanwhile, Austin enjoyed a music therapy session today. It's just one of the activities that is offered for the children at Sick Kids.

Austin begins next phase

Here's a quick update on how Austin is doing:
After a "post-radiation break" back home, Austin arrived at SickKids again last week and underwent a series of tests on his heart, lungs, kidneys and hearing. He also had A LOT of bloodwork and a lumbar puncture. He has a central venous line inserted to receive his chemotherapy drugs, have blood taken and receive medications, etc. This will cut down the number of "pokes" he will need to receive.

Austin was scheduled to receive his first doses of chemo on Monday, but developed a high fever and infection overnight. They have taken cultures to determine what the problem is. His chemo is therefore being postponed for 48 hours. They are now running broad-spectrum antibiotics through his lines, and will be giving him TPN (food through an IV) due to his declining weight and appetite. Austin is a bit down in spirits, so I am trying everything to cheer him up.

Austin just came back from visiting the Starlite room (see pic) which is booked at certain times just for kids in the Bone Marrow Transplant Unit, to eliminate exposure to other sick children. It was a chance for him to get out of his hospital room for a bit. I will be checking my e-mail everyday now, so if you would like to send a message to Austin ( I will print it out and read it to him) feel free. Please continue to keep him in your thoughts and prayers during this difficult period.........Lindsay

Back to Toronto

.................Click on image for a full size view.................

After the radiation treatments were completed, Austin was able to take about a 5 week break, until after the Easter weekend.

Tuesday, April 10, 2007

Austin and Lindsay left Thunder Bay for Toronto's "Sick Kids" this evening, to begin the chemotherapy treatment phase.