Hello friends,
All of a sudden we're well into 2013, so I thought it might be time to update
everyone again...once again, much has happened in the three months
since I last wrote - that should be my first sign that I need to think
about doing this a little more often. To get everyone sort of up to
date, here are the "high lights" (low lights?!)We got to start the month of November at home, a "clean slate"...that being said about two weeks after discharge we had a day trip back to the ER as Evie was having a few problematic symptoms. We were well prepared this time (I took my time, packed a few overnight bags just in case they were needed, made a few phone calls and even got a friend to drive us down to the ER so we didn't have to take our own car), and well taken care of, as usual. After a day in an ER room, and visits from several of her team (including our amazing NeuroSurg Resident), she was fully checked out and cleared to go home. We were home just after dinner, and thankfully Evie's symptoms were gone by the next morning.
Upon our discharge in October, we were told Evie would need to start taking thyroid medication, and so she did. Despite being a bit of a dietary adjustment (she cannot have milk/milk products 4 hours before and after.....that means no milk with her cereal, no yogurt, no cheese for breakfast.....all of her favourites of course!), it is going well. She has since had a follow up appointment with her Endocrinologist and they seem happy once again. Evie is tall for her age, and her weight is getting back on track. She has yet to gain all she lost, but is still considered to be in healthy range for her age. Skipping ahead a bit, after weeks and weeks of tests, we have recently discovered that Evie is anemic. This too should be somewhat of a simple fix, in that she needs to take a liquid iron supplement every day as well. Blood work will be done to keep checking that both the Thyroid meds and Iron supplements are working - so far so good....but always more blood work.
Within a week of arriving home, we had out first (and what would be our only) visit from our CCAC Home Care worker, and a week later I got the call that Evie was being called up to Holland Bloorview. Evie started her rehab at Bloorview on Monday November 12th. We had met with a social worker there the week prior and were told that they did not believe that Evie would need to be an In Patient (meaning live at the Centre), but would instead start as a Day Patient (meaning come to the Centre daily for therapy). This is great news for our family - after living in hospital, the last thing we wanted to do was come home for a few weeks and then move out again, so it came as a big relief and we were more than willing to commute every day. Evie's therapy would consist of daily 30-45 minute sessions with Janet (Occupational Therapy), Jennifer (Physiotherapy), Sarah (Speech and Language Pathology). When she isnt in therapy, there is a therapeutic play room, fully staffed, that I am able to take her to (and stay, or go have a break myself). Evie really enjoys coming to Bloorview. I generally take Isabelle to school in the morning, and then pack Evie up and head there right after. Her therapies are all tailored to her, so she does a lot of puzzles, plays with Mr. Potato Head, rides "her" tricycle down the hallways. Though I wasn't good about emailing, I did take a lot of pictures and videos, and I have uploaded them all to a new YouTube account. You can watch a bit of her progress here: Our YouTube Channel. She does her therapies, and has her snacks in between sessions. In December Bloorview even started a toddler Music therapy session once a week! Therapy at Bloorview is 1:1, but they made it a group program to accomodate how many toddler aged kids were currently in the Day Program - which is great because this is the normal kind of stuff that I would be doing with her....if we weren't spending our days at therapy.
On top of starting Bloorview, Evie's NeuroOncology team shocked us a little when they told us in late November they didnt want to wait to start a new Chemotherapy protocol. We were kind of given the impression at one point that Chemotherapy would come after rehab.....but as one of her Oncologists put it, "It looked like it was working, so we dont want to stop...". As we remember, the last time we stopped, things kind of got out of hand. And so we were rapidly introduced to yet another chemotherapy protocol (for those keeping track at home, this would be #4). The new regime is a bit complicated at first: running on a 42 day cycle it involves four days of chemotherapy at home (every six hours for 14 doses), followed by two visits to clinic for a dose of chemo there. Basically we're at SickKids every two weeks either getting chemo or chemo prescriptions for home. I wouldn't call us pro's, but by now, we know the drill. Some doses go down without a fight and we're amazed at how cooperative she is, and some go down with tears galore....both mine and hers. Either way, we're getting through it, one dose at a time. This protocol is expected to be about 60 weeks long.
Otherwise Evie had a follow up with Dr. Wong (Opthamology), and was once again said to be on track. Her vision is what it should be for a toddler, but it is becoming increasingly more difficult to test her. I feel that the problem is a few things, not only is she a "typical toddler" (meaning sometimes temper-mental, argumentative, stubborn...), but she also has yet to learn some of the vocabulary needed to answer the questions...I'm not convinced she can identify all of the objects, so it's not that she cant see them, necessarily....What's amazing is that since Evie had her surgery in October, her nystagmus has settled down - a lot. I'm hesitant to say it, but it's hardly there at all. This isnt something that was expected from surgery - so let's just call it a happy surprise. Dr. Rutka, Evie's NeuroSurgeon has had a follow up with her as well and is also happy with her progress. We don't need to see Endocrine, Opthamology or NeuroSurgery for six months!
On January 24th Evie had MRI #10 and the results show that the tumour is stable. There are no major visible changes in the tumour since her post-op MRI in October. Though I know we'd all love to hear that it is shrinking, stable is ok - we'll take it, for now. A week later, on January 31st Evie had her last day as an In Patient at Bloorview! She has graduated out of the Day Program and will now be an Out Patient, taking our therapy visits down from every day to once every 2-3 weeks. I couldn't be happier - I know Evie enjoys it there, but for me, it's been a long haul, and I am getting a bit tired.
I want to be honest and say that things have not been easy for us over the past four months. Evie being in hospital last fall has had a lasting impact on our family, and we are slowly coming to terms with just how serious things were. It was a scary time, and we're still walking a long road to recovery. I like to write with an air of optimism most of the time, because we are, I am. I have said many times, "You get what you give", so I felt I really needed to put out more positivity in order to get that back from each of you. But right now we're 28 months into something we thought was only going to last 11, still months away from "the end". After such a long time, it's hard to stay and feel positive all the time. I feel comfortable saying this now because I realize who I am sending this to. You are our friends, our family, our community and our support system. You have all listened, cared, and been there when we needed you to. Remembering this makes it easier for us to admit when we feel low, because that's when we have needed you more. Thank you.
This is an epic update, but I wanted to cram one more thing in:
Last week Paul and I were invited to attend the Meagan's Walk Gala. It was a great night, we were seated at a table with other parents which was so nice, and also got the opportunity to hear two of Evie's doctors speak about the advancements in brain tumour research, the new Research Centre being built, and the difference Meagan's Walk and Sick Kids are making in regards to Pediatric Brain Tumour Research. As of today, Evie's Team is registered for Meagan's Walk 2013. We were so proud to have so many of you walking with us last year, and would like to invite you all to join us again this year! Here is the link to join our team: Join or Sponsor EVIE'S TEAM. This year we walk again in support of Evie, but also in support of her friends.
Paul & Kristine
