Archives for April 2017

September 20th, 2016 we lay in Aiden’s Hospital bed chatting and joking. Eating candy apples and telling stories. Aiden was joking with the nurses over the red stickiness on his cheeks from the candy apples, “I am saving it for later” he told them. If I could go back in time to that night before the surgery, all the things I would have said, had I known.
As a baby Aiden was always advanced in meeting his milestones. He walked at 9 months, he talked crystal clear in full sentences at age 2. Other mothers at playgroup would ask how old he was. I was almost embarrassed to say his age as I saw the look on their face wondering why their baby had not met that milestone yet. At age 2 he could count to 15 as he went up stairs. Aiden was born with a full head of jet black hair, we called him our wolverine baby.  He came into this world the day the first wolverine movie was released to theatres, May 1st, 2009. It was suppose to be the last date with my husband before having kids; I guess Aiden wanted to watch the movie too. I remember seeing him for the first time, my heart feeling like it was going to burst with so much love and emotion. This little body came from me. This little baby changed my life forever, in more ways then anyone could ever know. I sometimes say that he saved our lives. I look at all this now and see such irony. How easy we take things for granted in our lives. If I have any advice at this moment it is to appreciate everything, hug your children a little longer, call your parents and siblings more often, stop and enjoy the beauty of a sunrise over a field or lake because you really do not know what tomorrow will bring.
September 21st, 2016, we hugged and kissed Aiden and told him how much he loved him. We told him the surgery was to “get the bad guy out”, to make him feel better and that we would be right here when he woke up. He said “I love you too” or at least I think he must of. I wish now that I remembered exactly what he said because this was the last time we would hear his voice for a very long time. The voice that use to tell endless stories and explain the science behind gravity and “dark matter”. The voice that remembered every word to a song and sing it with a country twang.
After 22 hours Aiden came out of surgery, the doctor told us that loss of life was out the window. He was not paralyzed but when we saw our little boy we were completely shocked. They said he was not paralyzed but that was what it looked like to me. Aiden developed a rare condition called cerebellar mutism (CM) and posterior fossa syndrome seen in children after posterior fossa tumour surgery such as he had.

The last thing I expected was that Aiden would not be able to talk. I am told that I was told of all the possible outcomes, although I strongly feel that I would have remembered if they told me my kid may not walk or talk the same ever again.  The day before surgery Aiden said, “I should have ran when I could of.” Referring to having the external shunt put in the day prior but and how true that statement became after the surgery. In August 2016, this boy was jumping off the boat swimming, catching frogs and selling them to highest bidder at camp; this boy could now barely squeeze our hand. We were told that the mutism  can last anywhere from a couple days to 52 weeks, but his voice may never be what it once was. Days past and no sounds came. Everyday confirming with the surgeon that it would come back. Weeks past and he started to have movement in his face, but still no words. A constant guessing game of what he was wanting to say or how he was feeling.

Finally he would make a sound, a crying, a moan. During radiation, one month post surgery, Aiden worked with a speech therapist a Spaulding Rehabilitation Hospital in Charlestown, MA for an hour a day. I remember the first couple sessions I would walk by the window of the office and see the therapist just sitting there as Aiden moaned and moaned. She explained that she was teaching him to use sound when he actually wanted to say something. It was hard to watch, to hear, but it did work. Instead of moaning all the time he did begin to control the sound, helping to understand when he needed something. The first sounds he made are so hard to describe, you did not know if he was in pain, or angry or upset, whatever it was, it was not a happy sound. It is excruciating thinking of it, even now I get a shiver down my spine. The speech therapist worked a lot on non-verbal communication with the goal of easing some of the frustrations. Working with apps on the iPad and picture boards to tell us if he was tired, or sick, or wanted to play something. After 10 weeks and still no legible words, despair set it. The times I would cry myself to sleep wishing for him to talk just one more time. To know for sure what he was thinking, what he was feeling. I would see other children in treatment and would want to ask them about their treatment, how everything felt, so I could understand him better, to help him better, but I never wanted to impose.
Out of all the therapy Aiden did in Boston, he did the least amount of Speech/Swallowing. Every morning Aiden was NPO  as they would put him under for the Proton Radiation. By the time he did OT and PT then went to hospital he was usually to tired for much more.  The speech therapist worked on mouth control, trying to blow out cheeks, blow bubbles, make funny faces. It was SO difficult and very frustrating for Aiden that allot of the times he would get upset and then not want to try. Imagine something that use to be so easy, something as easy as breathing now seemed impossible. When I first met with team at Spaulding they asked what I wanted the main focus to be on, I said walking, should I have said talking?
While in Boston, the only word Aiden had said was a muffled but loud “NO” and he could not make any sounds on command. I was told Automatic response would come back first. The other thing I had researched was that in some cases of mutism there is a double vision or trouble with sight and not until sight improves does speech return. We realized Aiden had this as well when one day I asked him if me saw 2 moms and he nodded and put up 2 fingers. Also pointing on the iPad you could see a definite variance on where he wanted to press and when he did press. One of the last thing we did before leaving Boston was take him to the optometrist who put a prism on one of his lenses to help correct the double vision.
Three months went by, we were now into December and returning home from Boston. The best Christmas present in the world came the week of Christmas as Aiden very clearly said “Mom”! Up until the point we would joke around, I would try to get him to say “Mom” and he would very clearly mouth “Dad” getting a rise from me. But this day as we went down the stairs he very clearly, with voice said MOM!
The next two months there was still little progress, more words came but only 1 or 2 just to get his point across. It was still feeling like his speech would never come back. At this point I really felt that there was something missing in Aiden’s speech therapy at CHEO. We would go for an hour session an I would not see a direction or overall goal we were working towards. I called around Ottawa to see if there was any other services available and quizzed them on what they would do. I found one Speech Pathologist who asked if he had done any articulation testing yet and I replied no but this is what I felt needed to be worked on. Aiden could say single words but they were so hard to understand. It was the best $150 I ever spent. She explained how the sounds were made and where he was having difficulty. there was a combination of breathing through nose for sounds made through mouth (causing the nasal sound) and also part was the muscles needing to learn again. Leaving this session I felt more was accomplished in 1 hour then our whole time at CHEO. If we had stayed in Ottawa I would have continued with this therapist and when we go back may still need to.
In February, we once again packed our bags, leaving the comforts of our home for treatment. The final stage of Aiden’s treatment was a 6 month Chemotherapy plan at Sick Kids in Toronto. Aiden was admitted to the hospital February 28th for three days of Chemotherapy. During this time the amazing team here and I discussed Aiden’s therapies. The concern for the lack of speech and still great loss on mobility and non-existent swallowing. Immediately rehabilitation services were set up. Same as in Boston, a main reason for choosing to travel so far away was for more specialized rehabilitation services. During this time the Sick Kids team said there was a drug that MAY help with Aiden speech. At this point I would have tried anything! It was a medication called Zolpidem, a sedative primarily used for the treatment of insomnia but had showed positive results on mutism. The plan was to do it that Friday but then Aiden spiked a fever and was feeling REALLY crummy. If this was going to work I wanted to give it the best possible chance and wanted Aiden to be at his best health wise. They told me that it either works or does not, it was fast acting, taking about 30 minutes to take effect. If it did not show improvement right away it was unlikely they would continue. There was not much information on how the drug worked to bring out the speech, how long the effects lasted and even the dosing was under question but it was worth a try.
Finally Aiden’s count came up and he was feeling much better, now or never. The speech therapist came in and did an assessment then the medicine was given. It was a disintegrating tablet administered through his g-tube. That day he also had received Ativan (Lorazepam) for nausea in the morning. Well the results were quite comical….. He was high as a kite. When the speech therapist and doctors came back to assess it was inconclusive as to the results but he was definitely relaxed and quite happy! We decided we would try again the next day, NO Ativan prior. Aiden had a very good sleep that afternoon and night.
The next day, March 13th, like before, the speech therapist came in, did a pre-assessments, drug was administered, and we waited…. It was hard to tell at first how much his speech increased but after the speech therapist came back in we both felt that there was some improvement in muscle control and clarity, also increase sentence length from 1-2 words to 3-5! I will never EVER forget that night. Aladdin was on Tv and Aiden said, very clearly, “I want a genie” I said “What would you wish for?” his reply was “All the money in the world!” to which I cracked up laughing “you would not wish to get better!” and we both laughed. This was the FIRST conversation we had in 173 days. I can not even being to describe the emotions I felt. Below is email  I sent to the Doctor from March 16th also the video is in the clip at he end of this post.

“For the last 6 months I have prayed every night for Aiden toe get his voice back! I do not even have the words to thank you guys enough for giving me a huge piece of my Aiden back! Attached is video from today, everyday he is improving and he is actually eating and saying “I love mushroom soup! Thank You. “

It was determined that Aiden would continue the Zolpidem every morning to see if there was continued improvement. There was significant improvement over the next week, the only issue was that because this was firstly a sleep aid and Aiden was also on other medicines that caused drowsiness He was extremely tired all the time. I also noticed an increase in extreme mood swings. Discussing concerns with doctors it was hard to determine if this was due to the Zolpidem or because he was gaining speech back and could actually express everything he had bottled up for the last 6 months. I was also informed that this unstable mood is very common with the posterior fossa easing my worries a bit but still making taking care of him that much more difficult. We decided to stop the Zolpidem after 2 weeks to see if speech continued and if mood stabilized. The speech did continue but unfortunately extreme outburst seemed to increase. To the point where I was scared for not only Aiden’s safety but those around him during these outbursts. When we first went to Boston, Aiden was put on olanzapine to help stabilize his mood but once back home he seemed in a much better place mentally and went off it. Now I sat in the physiologist room, tears down my face, asking for my son to be on heavy antipsychotic once more. The goal is that as Aiden learns to express himself more and gets use to everything new around him we would then plan to start peeling back these medications.

“Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words.”

Everyday, Aiden is improving. We are attending regular speech therapy at the Hospital and I have been working at home with a Apraxia App that helps him learn to coordinate his muscles movements. At the end of Chemotherapy Aiden will have another stay at a rehabilitation hospital in Toronto.

Slowly but surely he is getting stronger everyday. Just last night we lay in the hospital bed together under our “fort” and he sang me “Twinkle Twinkle Little Star” as I pretended to fake sleep and we joked around about all kinds of stuff. For those 10 minutes I had my Aiden back 100% and I know those times will start to come more. I would say the best parts of Aiden getting his speech back is hearing him say something new and witty! Something only an 8 year old could think of. I love when someone who knows him from before gets to hear him talk and the look on their face as they say WOW he IS talking so much better. I love being able to ask him if something hurts and him tell me yes or no. To be able to tell me “I feel sick”, Pukey sick or Belly I ask, and him able to reply. I love hearing him say “I love you” and “Thank you” or “Mom cuddle with me”. His voice is completely different and still difficult to understand at times. He needs to repeat a word with clapping to slow it down or be reminded to take a deep breath but we are at a point where everyday I get a bigger piece of my Aiden back. I can actually believe that his speech will come back to a point we can accept. I can see us sitting around the camp fire and him telling us crazy stories or singing songs once more.
I cannot thank the team at Sick Kids Hospital enough for stepping outside the box and looking into more ways to bring Aiden’s speech back. For truly providing the highest standard of care and making me feel assured that no matter what, I can not say I did not give Aiden the best possible chance for the best quality of life.
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[youtube https://www.youtube.com/watch?v=1WMs4RZ_hng&w=560&h=315]

It is hard to believe our first month is DONE! One round down, five to go. (well technically 4 rounds because Aiden JUST got administered his second and we have 28 days till the next) And although I can not say this month did not have its ups and downs I can honestly say that it was survivable.
Overall Aiden tolerated the Chemo well enough but the first weekend was rough to say the least. I had no clue what to expect, what was a normal side effects and what should be concerning. He kept saying “I feel sick”. It was the first time I had seem him truly nauseous. Aiden has gotten sick millions of times throughout this voyage but it is very instant and more a tolerance to the feeds. He gets sick and feels better right away. We joke that he has mastered the “Puke and Go”. This was a lingering yucky feeling. He also had very bad belly, back, joint and jaw pains. Pretty much soar all over. I joined the “Oncology Parents of Easter Ontario” Facebook group shortly after Aiden’s diagnosis, and after posting my worries it was a refill to know these where common side effect and also got tips such as heat back for belly, morphine for extreme pain etc. Luckily I also have a cousin (thank you!)  who lives very close and saved the day, bringing me Tylenol and ReLax as I called in desperation asking how far she lived. Within 20 mins she was at my door.  As I opened the door I burst into tears so happy to see her. Because I am here with Aiden alone I had no way of leaving him to get anything and was not going to bring him out feeling so rough. I am much more prepared going into our next month!  fBy the end of the weekend Aiden was feeling much better from a pain perspective and the extreme nauseous and body aches subsided.
I had wrote “Day 10” into my calendar, because this is the day that I was told his counts were to be the lowest  (Day 10 post chemo). And like clockwork they were. His neutrophils were at 0.0.

“Neutrophils are a very important defence against most types of infection. When looking at your risk of getting an infection, doctors look at the number of neutrophils you have. A low neutrophil count is called neutropenia. (https://www.cancer.org)”

Aiden spiked a fever which brought us into emergency at 3 am, what I now call the witching hour. His G-tube was EXTREMELY soar and he was started on antibiotics for infection. After a swab of his noes (which was not a easy task) if was found that he also developed a common cold and on top of that had Diarrhea. This left us on isolation for the week and anyone entering the room had to gown up.  The hospital is a completely different place on isolation. The walls seem to close in. It was a very hard week, but the doctor, nurses, child life, Camp Ooch and therapies were fantastic. From a MOM perspective it was almost a good thing being in the week. We got a lot of things sorted out, schedule for therapies, visit with phycologist, plan for a better feeding schedule and visit with the G-tube nurse. But the best part of staying a week was  they started Aiden on a “trial” of a drug called “zolpidem”. It is originally prescribed as a sleep aid but had shown positive results in some cases of mutism, which Aiden has (I will be doing full post hopefully in the next couple days). Although it was one of the longest weeks ever eventually the antibiotics did their job and Aiden started feeling better and we were discharged on the Friday.
Returning to Ronald McDonald House we both immediately stretched out in the comfy soft beds, let our a deep breath and just relaxed. This place that we now call home, even at hospital Aiden says “I want to go Home”, meaning the RMH. The relaxation was short lived as Aiden spiked a fever on Sunday at 3 am and we went back into emerge. Because our life is just never simply I have also learned that Aiden has a high heart rate as a baseline (100-120+). When we have to go into emerge and they see the high heart rate with a fever it is concerning to anyone not knowing him. Also, his blood pressure tends to run on the low side so in the middle of the night when they check and it is low it raises concerns and then they start checking every 15 mins.  (The great nurse we just had requested that parameters be set around the low pressure because he gets extremely agitated  getting checked every 15 mins but unfortunately this was not doable. There is still the chance that the low pressure could mean something at a point in time so they don’t wait to miss it….understandable ). After some blood draws and monitoring and more sleep we were allowed to go “home” again in the morning. Aiden’s counts were looking good but if anything bacterial showed up in his blood over the next 24 hours they would call us to come back in. The Ronald McDonald house is about a 6 minute walk to Sick Kids (Exactly $5.00 cab ride) so it is very convenient. The rest of the month went smooth, Aidens counts were on the rise, he has more energy and we had a great visit with his brothers and dad last weekend. I have wrote all the ups and downs in a planner, documenting everything. I feel much more prepared going into the second month with the idea and hopes that there is a pattern.
People always ask if we need things to do or if we are bored but honestly between, weekly clinics, therapies and a couple visits from people our days fly by. The times that we are just sitting and resting, watching a movie or even just napping are much needed. Like in everyday life, downtime is so important. A time to find your balance to unwind and rejuvenate. I asked one of the doctors if a child could get too much sleep during treatment and the answer is no. The body is working so hard it needs time to heal to rest. I have found that around 3 o’clock my body and Aiden’s both need a break “Mama, lay with me” Aiden says and I do not hesitate or think of a chore that need to be done because right now there is nothing more important then these times to cuddle and rest. At these times I always feel a mothers guilt I feel like I never spent enough time with this one on one, there was always something needing to be done. Aiden would ask for me to watch him play his Monster Game or do something else and I would tell him just a sec or I needed to clean kitchen or laundry or I would quickly read a bedtime story so I could have a needed a break of adult time. I have learned there is a fine balance and I have debated it over and over. What do we give to our children, what do they deserve. Eventually they will grow up and move out and not want bedtime cuddles. The big this that has changed is that there is no more  “just a seconds” as I have learned every moment counts and can be taken from you so quickly.
At one point in the month I asked another cancer mom, if it gets easier, how one day can be so great and the next just awful.  Her reply was so beautifully honest,

“Somedays you think to yourself “I can’t do this, not for one day” and then you get up the next day and you do it anyway because you have no choice. Next thing you know you’v got 7 months behind you and its like Woah… If I can do that, I can do anything!”

We just keep moving forward because that is all there is, but there is also a good feeling about moving forward, we are progressing. I do look back on everything Aiden has done already, everywhere we have been. All the pokes, tests and surgeries and they seem like a distant memory. We are not going back to that very first MRI every again, when our world turn upside down, we will not have to experience the first surgery every again. Aiden is gaining his functions back, slowly but surly, they may never be exactly what they were but they will not be any worst then they are now. We have gone through the radiation burns and the hair loss and I look at all this and see the light at the tunnel. 5 months to go, less then what we have already done!  As we get discharged today I hold on to the fact that we have now down 2 rounds, the side effects of the month are coming but 2 rounds down and I am better prepared. I am prepared for the gold at the end of the rainbow.
Aiden saw me typing today, saw me writing this “story”. I told him it was a story about him. I asked if he wanted me to read it to him and he said yes. I read him what I had so far and I could see him light up. It was scary reading it to him but also motivating at the same time.  I told him I was writing a book of Aiden, and asked him if he wanted to know what it would be called. He said yes. I told him “Mama Outpost: Aiden Voyage” I asked if he knew what voyage meant, he shook his head no. I said a voyage is a trip, to go and explore, travel and discover something you never knew before, to a unknown destination. I told him that we are on a voyage we are discovering and exploring all the time and eventually we will find our destination and this will all be  over and be an epic tale of his bravery. I told him I was writing a book to maybe help other families going through this too. I asked if he wanted me to read him more of his story sometime and he smiled and shook his head with a big yes. I smiled too. it was the first time I have wanted him to hear his story to realize how far he has come already. To know he is not alone in his feelings. I tell him all the time that if I  could take this away from him I would, this is not fair and how sorry I am but also how amazed I am of him. It is a parents nature to protect their children, to shield them from the pain in the world for as long as possible. Being thrown into this situation my perception of protection has changed.
I know Aiden is 7 (Almost 8) but he is our first and I have lost the last 7 months with him, I do not know what a almost 8 year old is like. Sometimes I look at him and he seems so much older and sometimes needs the security of a 3 year old. I hope I write this and another mom can find comfort in the fact that I just do the best I can. I go with my gut the majority of the time and pray i make the right decisions for the future. Most recently, with Aiden getting more functions back, I strive to set limits so that when we are done all this I still have a half decent son. But I guess that is all any parent can ask for……
 
Below photos are a pretty good summary of the ups and downs….