October has been a pretty “crazy train” to say the least. I apologize for not keeping the blog as current as I should be.
Beginning with the first day of October, we were fortunate enough to attend the Isaac Foundation’s Gala For a Cure. This was truly an awesome event and we were fortunate to be accompanied by all our parents and Braden too. It was very nice to have them go with us and support us as well as the Isaac Foundation charity. Sitting in a ballroom filled with people who were all there for the same reason was truly inspiring. We had a great meal, and then there were some nice words said. Andrew honoured our family, by introducing Jasper and our family and telling everyone a little bit about our journey so far, and the struggle we had to obtain the funding for Jasper’s treatments. He then turned the microphone over to Pam as she had written a few words as well. Here I have included the wonderful speech she (with a little help) put together and did great job of telling:“It was only April of this year when we heard the three letters that would forever change our world – MPS. These three letters were something we had never heard before our son Jasper’s diagnosis. We struggled to understand their meaning and to figure out how we were going to deal with all of the information and emotions that were suddenly and quite unexpectedly thrown our way. All of a sudden, when we looked at the face of our beautiful little boy, we no longer saw what we had seen even the day before but now we found ourselves searching his precious face, body and movements for signs and clues, analyzing his every move and word to see if we could pinpoint which type we were dealing with and how severe and quickly the disease was progressing. We were plagued with feelings of helplessness and confusion, guilt and despair.
It was mid July after many blood tests, urine tests, a skin biopsy, DNA mapping and many emotion-filled weeks of waiting when we were told that Jasper in fact had MPS type VI. Our team of Doctors sent us home that afternoon with stacks of information and so many thoughts and questions swirling around in our heads it was extremely overwhelming. When I sat down to read some of the information, I discovered at the top of one page they had handwritten a website – www.theisaacfoundation.com I immediately pulled up the website and as they say – the rest is history! It took me 2 or 3 attempts before I could complete an email to contact The Isaac Foundation as with each attempt came a flood of tears and emotion. When I finally forced myself to send that first email the response I received was filled with nothing but compassion, support and encouragement. I began asking both Andrew and Ellen a multitude of questions and their every response was brimming with wonderful information, guidance and a positive outlook.
We immediately began the process for applying for funding to cover the Enzyme Replacement Therapy that is available for MPS type VI. On one hand our doctors were telling us there was treatment available but on the other hand it looked like obtaining the necessary funding was going to be very difficult. We felt sick. We knew in our hearts we wouldn`t stop fighting until we had the answer we wanted and funding for Jasper was approved but at the same time we didn`t know where to start. This is when we turned again to The Isaac Foundation for advice. There are 2 statements that come to my mind whenever I think back to July and early August and our initial conversations. The first is an email from Andrew in which he told us `rest assured you WILL get treatment paid for here in Ontario. Isaac has set a precedent and they cannot deny a patient treatment that is already being given to another child in the province given that they suffer from the same disease`. The second statement came from Ellen when she responded to an email with `We will do everything we can to help and trust me, my husband is a very determined man!’
It was mid August when we began to realize the true magnitude of Andrew`s determination. Our initial application to the Ontario Ministry of Health for funding had been denied and we were nothing short of devastated. We knew we could appeal this decision but were concerned that alone wasn`t going to be enough. We didn`t have to express our concerns to The Isaac Foundation, as they had already anticipated our thoughts and had begun working on a press release the day before to spread the word. You see it isn`t only determination that Andrew seems to possess but to Ellen’s email I would add the traits of dedication, knowledge and compassion as well. The positive manner in which he kept pushing and encouraging us throughout the entire funding application process was nothing shy of amazing. Without the Isaac Foundation we would have lost.
One other moment along our funding application journey really sticks out in my head. It was Wednesday evening of the week we had been denied by the government and I was chatting on the phone with Andrew and expressing some of my concerns and frustrations. He was doing a great job of trying to keep me positive but I am not sure I was buying it at that point. All of a sudden he said to me “hey, would you like to talk with Isaac?” I most readily agreed and on to the phone came the happiest “Hi Pam!” Isaac and I chatted for a couple of moments and then I asked him if he knew he had amazing parents? He let out a bit of a sigh and said “I know, I’ve heard that before”! I am not sure anyone realizes how much that short conversation did for me. It picked up my spirits and gave me the encouragement and boost I truly needed at that point in time. To hear Isaac so happy and full of life reminded me of exactly what we were fighting for.
It is now October and when we look back on the roller coaster ride we have been on since that day in April we are amazed at how far we have come. We have had numerous ups and downs in the past few months but continue to be amazed by the support we are receiving from family, friends, co-workers, community, doctors, church and our new MPS family. As we anxiously await Jasper’s first Enzyme Replacement Therapy appointment we feel blessed for Jasper to have received the chance for treatment and what it will mean for his life. We no longer look at his every movement in search of answers and analysis but see our Jasper again. We see ways we can fundraise to find a cure, we see wonderful people that we never would have met if it wasn’t for this disease and we continually search for ways to make Jasper’s journey positive and life changing for everyone he touches.
Andrew and Ellen, you truly are amazing individuals and together with your 2 boys you make an amazing family. As I said before, without your help we would have been lost. Darren and I will forever be thankful for everything you have done to help Jasper and to help our family. Jasper is scheduled to start his first treatment session next week and without you that may not have happened. For this we are forever indebted. Please accept our extreme thanks and the thanks of our families that are with us here this evening. Please know that we look forward to connecting our families for as long as it takes for us to find a cure for Isaac and for Jasper and for all others affected by this disease and beyond. We are ready and willing to step up and support the Isaac Foundation in whatever capacity we can. We look forward to fundraising right along beside you in the search for a cure. We are ready to hold out our hand in hopes you will reach out and take it as we walk this journey with our families. We are so happy to be here tonight and know it is just the beginning of great things to come. Look out Andrew some of that dedication and determination may be wearing off on us! There is a cure out there and together we are going to find it.”
Then some of us (Clay not so much) enjoyed the sounds of Sarah Harmer playing her guitar as she sang some of her favourite hit songs. Then it was Clay’s turn, the dance floor opened up and Clay got his groove on, and shook what his momma gave him…..just past midnight, until his parents made him go to bed.
The More kids and the McFadyen kids got along very well together and I could tell this was going to be the start of a great family bond between us.
We began to look forward to the coming Wednesday, October 5th. This was to be the first day of treatment for Jasper. That is until Tuesday morning, he began to cough. It was with great disappointment that we had to postpone that much anticipated treatment start till the next week.And so it arrived. We had an appointment with the neurosurgeon on the 4th so we went down and took advantage of the Ronald McDonald house on site at the hospital. The neurosurgeon was happy with all that she had read about Jasper thus far, and everything she could see from him in person. Her biggest concern was with the common spinal cord compression which often occurs in MPS patients. She will order and MRI to be done and will likely want to repeat it every 6 months or so, to keep a close eye on it.
After a decent nights sleep in the Ronald house, we made our way across the driveway to the PMDU area of the hospital which will become our home away from home.Jasper was very apprehensive on this first visit as you can well imagine. Our first ‘struggle’ came when we were supposed to give him is oral pre-medication. Tylenol and Benadryl given to help prevent or offset any minor side effects such has headache, fever, skin irritation etc, that the Naglazyme might cause. Holding him down, and trying to keep his mouth open at the same time as he’s screaming, we force the medication in. Not even bribing him with a popsicle helped. By this time, the Emla cream we put on over his port to freeze the skin, had been applied more than an hour before, so it was time to access the port, or in Jasper’s words, “GET POKED”. He did not like this part at all. But after the initial shock, he calmed down fairly quickly. We then began the four hour process of pumping his body with 130ml of the artificial enzyme.
On pins and needles we waited, watched, and hoped that things would go well, and he would notice little or nothing to do with this foreign matter entering his bloodstream. Once again, our prayers were answered. Four hours later, after a lot of games, a movie, and a brief nap, the $4775 bag of fluid was empty. After another hour of straight saline solution, and a few more vital checks, we were cut loose. We had to stop on the way home to get another fish of course, cause the first three were gone already. J
The coming weekend was to be another long awaited one. One we’ve been looking forward to and working for, almost since we heard the letters MPS (together). The Scotiabank Toronto waterfront marathon 5k event. At this time, I want to thank you all again, who generously sponsored our team in our effort to raise funds for the MPS Society of Canada. Together we raised over $12,000. What an amazing feat. I also want to thank our friends and family who took time out of their busy schedules to help with the fundraising and then joined us in Toronto either the day before, or the day of the big event.
And what an event it was. To be one person in 6500 in the 5k event, one person among 22,000 in all three events, and one person, there raising money and walking for my own cause. This was very humbling. Seeing all the other people there, walking for their own reason(s), some on crutches, some using walkers or wheel chairs…… The kids in our group all did a fantastic job, there was very little complaining and lots of laughter and cheering and having fun. Which we couldn’t have asked for anything more. I cannot wait for next year. I’ll be watching the Scotiabank Marathon web site for info on next years event, and waiting for the time when I can sign up.
That pretty much brings us to the second Wednesday of treatment. This time we leave home about 7:30am to begin our day. Things go really well at PMDU this time around. Jasper even stepped on the scale to be weighed all by himself for the first time. Mom and dad put the EMLA cream on before we get into the waiting room this time, so it will be all ready to go on time. Jasper is a big boy this week, and takes his pre-meds without a fuss, and only a little bit of crying when it’s time to get poked this time. No crying at all when taking the band-aids off, or when taking the needle out of his port. Mom and dad are SUPER proud of the little man. Once again on the way home, we have to stop and pick up a new fish because yes, this one didn’t last the week either….. good thing they’re not expensive and good thing we haven’t had time to get too attached to them either.So, with all this going on, throw in the fact that Daphnie has started Jazz dancing on Monday evenings, and Hip-Hop dancing on Saturdays, Clay has started hockey Monday, Wednesday and Saturdays, mommy has started bridge, and daddy has started curling. As you can see, October has been….full. I’ll be glad when it’s over, but first…….HALLOWEEN!!!! Pictures will follow!
