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.