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.