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.