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)!!!