Thomas and I have now minutes from completing our journey to China (hooray!), the 6th and final stem cell treatment took place on Monday. Thomas again showed little side effects and cooperated well. Mostly he became highly stimulated particularly after being allowed food, so much that I brought it to the doctor's attention. Dr. Tony assured me that Thomas' reaction was not uncommon, a sign believed associated with cell stimulation and the only concern was to keep him laying flat, which was then difficult to do. The following day, Thomas was tired yet remained upbeat/excited, then hit a wall and go back/forth for the balance of the day.
The previous Sunday, we spent a fun day downtown with our new friend Adele (the local university student who volunteered to join us during outings). We attempted some shopping which was not that successful - Thomas bored easily, there were huge crowds (hard to find what I'm looking for/hard to know what I'm looking for) so we quickly detoured and headed to the zoo and had a great time. Thomas was very intrigued with the tigers (an animal he often likes to imitate) and we finally discovered the monkey in the costume and posed for pictures. When we finished, we looked up and discovered a huge crowd had gathered around to watch (the herd of cows I often call them, because they stare). Thomas was again very eager to go on the rides; a carousel which I was impressed he could sit on without support and a bungee like swing that he delighted in (and good for him to feel his body in space). We also shared a kiddie car ride, which he esp. reacted to when I would purposely crash into bumper tires.
On Wednesday, I had organized care for Thomas and had a day dedicated to shop! April, one of the nurses offered to spend the day with Thomas on her day off and Joanna (mom of Jeremy from Singapore) and I - with Adele and her friend, all headed downtown to a popular market and did some serious purchasing. It was perfect to be in the company of 3 Chinese speaking people, 2 of them who were seasoned negotiators. I was lead to chosen merchants (out of several 100) and shown wares I/they determined would be worthwhile to bring home and Joanna and Adele took care of the rest. It was a wonderful set-up and I made away with some really good items/gifts at excellent prices (I am already thinking I should have bought more). We also took time to have lunch in a local restaurant and again grateful for the guidance in that department! When we came back to the hospital we were all pretty much spent (physically, financially) and I could see that it was a busy day for Thomas and April as well. Thomas of course had a great time and April was still smiling, but a bit out of breath! All in all it was a great day apart and I wished I had done this sooner.
There is another family here from Canada (now there are 3), who live in Oakville and I recognized the girl and her mother right away - we had met this summer in a waiting room at Bloorview Kids' Rehab. I had spoken to Carolina about my upcoming trip to China and had given her the Chinese website. Her daughter Sophia survived a near drowning accident at the age of 5 and is quite involved (non verbal, in a wheelchair). Carolina had also spoken to me about a neurologist Sophia sees in Florida who I was familiar with and who is garnering more and more attention with the stem cell group I belong to. Dr. Hamessfhar treats kids with cerebral palsy with a therapy called vasodilatation which apparently opens up the vascular system and allows stem cells to reach deeper into the tissues - which sounds like a winning combination. Another mom from Ability Camp - Kim, takes her son Jason to see Dr. H. and can't say enough positive things about him - even without the stem cell therapy. She will speaking to him during Jason's next appointment to see about the possibility of Thomas getting in. It was Dr. Hamessfhar who ultimately encouraged Sophia's family to seek out the stem cell treatment. Her father joined them as well , but after 2 days was exiting with his suitcase. I happened to walk by and ask and discovered that he was checking into a local hotel. I could tell that there was some conflict about that and didn't know what to say, and after a few awkward exchanges suggested perhaps they could take turns staying in the hotel, which was not part of the plan at all (oops).
Preparing to leave China was a big focus this week (physically and mentally) and while not nearly as busy as preparing to arrive a bit hectic nonetheless. We had to complete final paperwork, a questionnaire, thank you notes, I bought some gifts for staff. Thomas completed his blood work and his exiting video assessment, I tried to video tape everything I had not done the 4 weeks earlier. The most stress of course was packing in the 11th hour (following a day of shopping 2 days prior) and trying not to stress about the inevitable long flight back...
I can't say I will miss China but I was happy to get a glimpse at a very different culture and will remember the very hospitable, honest, hard working people - their over attentive stares, their reckless driving, their very different cuisine and the many daily misunderstandings that take place within the language barrier. I don't think Beike would prosper as much if they did not have the investment in the english speaking translators.
I will certainly not miss living in a hospital and sharing such little living space with Thomas. I will not miss the 2nd hand smoke, the Chinese public washrooms and the constant noise pollution from beeping horns. I am really looking forward to being home, sleeping in my own bedroom, preparing meals in a functional kitchen that I don't have to share with several people. I am looking forward to reconnecting with Adrienne and with my family and friends. Thomas of course can't wait to see his Daddy.
Most importantly, I am leaving China knowing there are changes taking form within Thomas, what they will amount to in terms of sustainable functional gains, will remain to be seen but I am anxious and very motivated to work with him on realizing his results. It will be a challenging and engrossing few months for both of us, but I am up for the challenge - I hope Thomas is too...
Nine days following our return, Thomas and I will fly to San Francisco for 12 days and he will receive therapy from a gifted therapist named Anat Baniel who works with kids with CP on developing new neural connections and patterns. I have been aware of her work from the early days of Thomas' diagnosis and have heard patients see results almost immediately and am anxious to see how Thomas will respond. Thomas is also scheduled to begin physio with his old therapist Ester, appointments I had to book 3 months in advance. I know her therapy well and it will intensely focus on building balance through a variety of standing/stepping exercises, using wooden boxes and wobbly boards. It's tough and will require me to work with him on a series of exercises twice a day. I will also seek out speech and occupational therapy and build that into his day. I have begun to recruit some help - someone with energy/enthusiasm to come to our home and engage Thomas in educational play to work on some of his skills and give me some free time to devote to other areas. In 3 months, Thomas will need to compete the prescribed hyperbaric oxygen therapy (to help keep the cells settled) and perhaps attend another 10 weeks of Ability Camp. Things will be hectic settling back in and I will try not to get overwhelmed and overly distracted with tasks around the house and put off any fundraising planning, at least until I get back from San Francisco. I will try to spend as much time with Adrienne as possible, I will try to get my lower back treated before I leave and maybe take time to visit the gym.
On a grander scale, I will begin the process of my separation from Rob that took place prior to my departure and prepare to sell the house and begin a new life as a single mother...
Being in China, as busy and unsettled as it was, allowed me time and space to breathe and think (and write). It allowed me to be at arms' length from many people and tasks that generally consume my time outside of Thomas. I regained a better sleeping pattern, I prayed more. I met a variety of new people from other parts of the world. I read a book - an uplifting book called Blue Sky July that Keanu's mom Lisa gave me before she left. Not thinking I would not have time to read it, I found I could not put it down. Written by a mom of a boy with cerebral palsy, the author Nia Win chronicles her son Joe's first 7 years and I was in complete awe of how she succeeded over a grim prognosis: a child who would never walk/talk, do anything - a child who "will never know you". Going against medical opinion, she was convinced her son should not be medicated for seizures and eventually it was proven that he did not have epilepsy. She was convinced Joe had the possibility to see and did endless prompts to spark it; she transferred the nursery into a dark room, adding different lights, including a 200+ bulb that she would flick on/off for 5 mins, wearing a bright pink wig and loud lipstick, trying to catch his attention. Despite being told she was wasting her time/in denial, she persisted and after 2 years it was proven that Joe had cataracts and his vision was corrected with an operation. She exhausted herself in hours of physical therapy, tapping her son's muscles to wake them up, she repeated patterning exercises over and over and eventually Joe began to move muscles on his own and slowly become verbal. I read a well documented journal of a familiar lifestyle - the physio, OT, speech appointments, the cranio healers, adjusters. The massages, the sage baths, the fish oils, the brain supplements, the naturopaths, the oxygen, the special nursery programs, the outfitting of the home to engage home therapy. The endless research that consumes your rare spare moments, jut in case there is something else out there...
I could relate to it all, and at one point Nia summed it up to a "pilgrimage" that she and her son were on and together found a sacred place after years of heartache and pain. By the age of 7, Joe had beat huge odds, was enrolled in a local school and adjusting well socially, academically - he was tested at above-average intelligence. Talking, moving around in a walker, holding his head up - a boy his parents were told "wouldn't even know you".
I would have been uplifted reading Nia's book anytime, but I think reading it China gave me more inspiration, focus, appreciation.
It is not easy to ultimately try to heal your child, to give them function their brain and bodies are not capable of accomplishing on their own. When so many actions are not automatic, you realize how many complicated steps and fine motor skills and perfectly coordinated muscle groups it takes to do the everyday things like brush your teeth, feed yourselves or speak. I have never known how much we take for granted. To me, I really don't feel there is a choice and I still believe that hard work, love and faith will ultimately bring Thomas forward and give him the life he deserves.
There are many people who have supported Thomas in allowing him the opportunity to take part in stem cell therapy and I couldn't complete our journey without acknowledging that support. There was a huge cost attached to this trip and I would like to thank the many donors who gave so generously (a detailed list will appear on Thomas' website later this year). For the specific fundraising efforts that took place prior to our departure; the annual Harshaw street sale and the team of neighbours who gave enormous amounts of time and energy to create a community fundraiser for Thomas. To Rob's friends; Derek Blakely for hosting the 2nd annual Hope for Thomas BBQ for more than 100 friends and family in your home and to Tim Diamond for raising major revenue that will sustain Thomas' therapy into the new year. To 2nd Cup, for continuing the Toonies for Thomas drive and creating awareness within Bloor West Village. To Aeroplan, for providing airmiles for our trip and for creating a dedicated fund for Thomas' ongoing travel. To my friends Sheila who auctioned off a 5 course dinner in her home and Heather who will host a Chinese dinner party the day after we return.
To the hours of time family and friends devoted to helping me prepare for my trip, the extra hands you gave towards helping me manage the house, the yard, prepare for the sale. For the meals that were dropped off to our home, the offers to help in whatever way you could. For the moral support you gave me during a challenging summer, for keeping me focused and optimistic. To the spiritual support from my church - for blessing Thomas, Adrienne and I prior to our departure, for your continued thoughts and prayers, for being a focal part of our lives.
To my parents for allowing me the unique experience of growing up in a family of 10 children, for predisposing me to chaos, for teaching me the values of hard work and how to make sacrifices for your children.
Finally, to a couple of moms from Ability Camp who gave me the inspiration, motivation to take this leap - to Lynne from The Yukon who talked so passionately about stem cells 1 1/2 ago (and who had the fire to successfully challenge the government in a human rights complaint to pay for her daughter Eva's therapy at Ability Camp) your conviction and the respect I have for you as an educated mother and friend led me down this path. To Jo-Lynn (from Thunder Bay) who paved the way by preceding my arrival this summer with her daughter Kamryn. For your endless information, emails, phone calls, for leaving me a care package when we arrived of essentials, for putting me in touch with Adele (and the coffee shop).
Lastly, to my children; Adrienne, who continues to show enormous understanding and wisdom beyond her years. You have endured many sacrifices and struggles that I wish I could take away. You impress me most with your empathy which I know comes from having such a big heart. Your enthusiasm and love for your brother is often selfless and always unconditional and I know he and I will always be able to count on you. I hope I never take you for granted, although I suspect I have unknowingly, unintentionally and I regret that. You have made me extremely proud.
To Thomas who has changed the way I see the world, the way I think and the things I find meaningful. You have given me drive and energy I never knew I had. You've taught me to learn through insight and through pain. You have brought me closer to God. Never has anyone ever consumed me/exhausted me, but the promise of a better life for you gives me the will to go on and I know there will never be another person on earth who will give me that. Your gifts are endless and you have touched the lives of more people than you will ever know. You too, have made me extremely proud.
Thank you all who shared this journey with my family - for your interest, support and encouragement. We look forward to coming home and sharing more with you in the coming months.
Linda
