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Archives for December 2016

Ringing the Bell

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Today is the Day! Today is the day that I have watched many other people do with tears in my eyes. An overwhelming of emotions.
 Yesterday (Wednesday) I met with Dr Y and Dr H, they suggested that we forgo Aidens last radiation scheduled for Friday and make Thursday the last. Because Aiden had such bad buns down his spine it shows that he is extremely sensitive to the radiation so they did not want to risk damage to his brain stem in doing the last treatment. I asked if missing one treatment would effect the outcome, with a reply that most likely not, we still have Chemo ahead of us and that it would not be worth the risk. She also said that on a positive note, in her experience, Kids who showed skin sensitivity to the radiation, like Aiden had, also show that the cancer cells are more sensitive too. FINALLY A BIT OF GOOD NEWS! 
The original plan, was for Josh and the boys and Mumma (Grandma) to come down Thursday afternoon for the bell ringing Friday. As soon as we got in the ambulance heading back to Spaulding I called Josh’s Mom. “Can you pack and get here tonight?” Josh was writing an exam and Declan had his First Christmas Concert that night.  I feel like everyone needs a Mumma! With no hesitation Leena said I’m on it! She packed everything and ran down to Kingston to get her Passport and was back before school even ended for the boys! 
That evening Josh had sent me photo and video of Declan’s First Concert. A little emotional that I could not be there but happy that we made it a priority that Declan not miss it. Josh and the Family left after the Concert and through sleet and snow made it to Boston around  3 am.   Aiden was pretty surprised to see them a day early!

During this time we were also in communication with hospital back home. With ending of treatment, also ending of the Ministry funding for the rehabilitation. I could not imagine sitting back at Cheo with Aiden for Christmas it was not an option. The other suggest they had was that we go direct to sick kids for intensive rehabilitation. I saw this as even a worst option, sending Aiden to a new city, new hospital all together, out of the question. At least if we stayed in Boston longer, Aiden was familiar with surroundings, we had the Ronald Mc. Donald Apartment across the street, and Boys ad Josh were here. I decided I needed to lay this out very clearly for the team back in Ottawa. I now needed to advocate for the best interest in my childs mental health. After a couple email back in forth pleading my case we aggreed that the below proposal was doable (if no problems along the way, such as getting equipments, fevers, etc.). I have never been so thankful in my skills for business writing!

From: Stephanie Verk <sverk@icloud.com>
Date: December 14, 2016 at 9:53:58 AM EST
To: Caseworker
Subject: Re: Home
Good morning,
Thanks for getting back to me so quick. Can you forward me the email regarding care and equipment so I have a better understanding where we stand. I had assumed with Christmas holidays things would be slow that is also why I did not see benefit in going directly to Toronto as not much rehab would be happening. 
If we do plan to come home now, would be a realistic timeframe:
December 20th fly to Ottawa (Cheo). 
December 20-23rd assessed at hospital
December 24th-26th home in Almonte 
December 27th – back to Cheo to continue assessment/figure out rehabilitation plan going forward. (Stay Cheo, Toronto rehab, outpatient rehab?)
Thanks,
Stephanie
Sent from my iPhone

So everything was lining up! Looks like “I’ll be home for Christmas”. It was such a hard decision because the rehabilitation has been so good here at Spaulding Rehabilitation Hospital but one of many hard decision we have already faced. 
So Thursday, the day has finally arrived! Aiden is beaming, he is ready to ring this bell. I went in the Amulance on the way there for the finally trip. When we arrived the  girls in the Proton room had made it extra special  for Aiden, decorating his bed, a present, reindeer Aintlers and also let Aiden and his brothers pick an extra toy because he is missing Friday (Which is usually toy day). I can not thank the team at MGH enough for making this experience bareable. The staff and nurses were amazing. Offering Art and Music as we waited everyday, being a shoulder to cry on, talking to Aiden not as a sick kid but a normal 7 year old boy. They were always there giving the best care, dental, fevers, blood draws, gastro, you name it Aiden got it looked after. A special thank you to Rachel! When Aiden was swatting all the other nurses trying to draw blood, Rachel just had a way with him and he would not even bat an eye!
Finally Aiden went into the radiation room for the last treatment as we waited in the waiting room. 45 mins later he was finished and Josh texted they would be coming out soon. I thought I would be balling my eyes out, as I had done for so many of the other children I had watched ring the bell but this was a different emotion. I was just plain HAPPY! And so proud of Aiden. We made it through this first part, 6 weeks done! I know we still have a huge battle ahead but step one complete!
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Video: Walking for Pokémon Balls

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So we have finally found Aiden’s motivation! Over the weekend he has made amazing rehabilitation in his left arm/hand and coordination in his fingers and improvement in his eyes sight that he is now able to play iPhone games again! With that we also found out that there are new and different Pokémon in Boston. He loves being able to play Pokémon Go and earning balls to catch all these new friends! Hey yes it is bribery but hey he walked 100 feet today in a regular walker, build a robot, ate 8 spoons of pudding, played Bingo and did car transfer so it that’s what it takes well worth the $5.99 for 100 Pokémon Balls! 
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This second video is in the proper walker that fits him better. He walked all the way to his bed! 

A half told story…

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As I write this, I try to write this as a narrative, as a novel. I try to disassociate myself from the reality of the words in the story. If this was a novel it would be placed in the horror section because nothing is more scary then watching your child battle cancer. Watching your child battle death. Yes I said the word, death. Because in this story the mother is trying to come to terms with the fact that this is a possible outcome, “that we are not in the favorable outcome category”. In this story the mothers trying to understand what these words mean, tries to imagine a world unlike the one before, a life with a piece missing. It is unimaginable and dark and full of terrors. “At this time I need to talk to you about grieving “”at this point we still have the intensive Chemotherapy and that is why we do both” all these words are told but not fully heard. The mother knows it is not good when the doctor tears up and tells her husband and her “life is not fair sometimes”. The mother returns the next day to get clarification, or maybe she is looking for hope. Hope that she heard the doctor wrong, hope that there is more then this. More then just watching and waiting for death to win. 
Back in the tiny exam room the mother has her list of questions, prepared this time. First questions: “when you said grieving is that what we should be preparing for? Is That where we are right now, are we preparing for worst case scenario, then what is the point?” The doctor apologizes for leaving her so hopeless  and tries to explain, saying a lot of the same stuff all over again. “There are many forms of grieving, grieving about time already lost, grieving about unfavorable results, grieving is a process….” He explaines that with medullablastoma there is low risk category, where the cancer is in one spot and fully removed (not them). Then there is high risk, where it has metastasized in a couple spots in the spine as well as the back of the neck, surgury is performed and radiation to kill the rest (what they thought they were). He then explains that in this case the scans have shown numerous growth in his spine, and on arrival to Boston found in other parts of his brain as well (that were visible in the very first scans but never picked up) there are spots on the brain behind his eyes, spots round his ear, spot on areas effecting smell, in short, alot. So what are we looking at?” The mother askes “we were given 70% success rate before, what is it now?” “I do not have a number but I see a number is important to you so I will see if I can find out” the mother pushes “Like 50%? 10, 5, 2%?” Feeling herself falling and partly not wanting the answer. He can not say…  The mother hesitates to ask the next question on her list, does she really want to know the answers? “So at this point is the radiation working at all. is he where he should be this far into treatment compared to other kids?” “The hope was that the scans would show the spots completely gone or significantly smaller.” The doctor tells the mother “there was a meeting where his case was reviewed and half at the table said, “good they have not grown, there is no new spots, and some have diminished a bit in size. Although the other half of the room said “yes, but they are still there.” So the mother concludes that half the room is glass half full people and the other half, glass half empty. The Dr laughs “yes you could say that”. “So what does this mean?” The mother asks, “have you seen cases like this where the chemo takes out the rest? Can you live with spots still in the body that don’t grow? Have you seen this? What will it look like, That he could just stop breathing. Will we know ahead of time? Can we do more radiation? Will we do more radiation after Chemo. When will the next scan be?” The doctor says that yes he has seen cases where the chemo gets the rest and we still have two weeks here and they are going to do extra shots of radiation here. Yes you can still live with scans that show spots if they stop growing. Yes that is one possible outcome depending where and if the cancer grows again. He can not speak on what the chemo will do because we are not there yet. “The next scan would probably be before you start Chemotherapy” the list of questions is done but a hollowness fills the answers. The mother leaves and tries to make sense of it, of the meaning of it all and can’t. A part feels more hopeful after the second talk but she wonders if she is manipulating the words she has heard. Is denyal one of the first steps of grief. 
In this story the mother has started begging god to help. She remembers standing over her new borns crib every night praying that her beautiful baby boy grow up to live a LONG and happy life. That he would be funny and smart and handsome and kind. That he would have many friends and could do anything he put his mind to. Every night the same prayer to keep her baby safe and grow up to be a mighty man of God. Somewhere along the way these prayers stopped. Somewhere along the way her life got to busy for prayers. She knows she has felt god in her life answering prayers before and she calls out to god that he remembers these nights, every night so long ago, when she was a much younger mom and had a mighty faith. She remembers being told that if you pray that it has already happened it will and this is what she did EVERY night over her first born.

Mark – 23“Truly I tell you that if anyone says to this mountain, ‘Be lifted up and thrown into the sea,’ and has no doubt in his heart but believes that it will happen, it will be done for him. 24Therefore I tell you, whatever you ask in prayer, believe that you have received it, and it will be yours. “

The strong mother that only cried once every 2 weeks now breaks in moments throughout the day, now kisses the bald head of her sleeping child every night with tears dripping onto his warm skin. The mother has walked around the last week in a constant conversation with herself, with what ifs, and replaying all the possible scenario of all aspects of her life in her mind.  Holding this information, unable to speak, this weight is sinking her. The writer of this story does not know whether to share this story yet, she wants to write a fairytale with a happy ending. A triumphant story where a little boy fought hard and learned to walk and talk again and kicked cancers ass all with a smile on his face And they all lived happily ever after. The writer does not want others to worry like the mother has been. she wants to hold all the pain and worry to herself, to protect the audience. To not post until there is a better outcome but then what does that really mean. So does the writer post a half told story? 

Bittersweet

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At the Francis H Burr Proton Centre I sit once more, back to the routine I have grown accustomed to over the past 4 weeks. It was a bittersweet visit last week with Declan, Lynkon and Josh. Amazing to see them but also a reminder of everything we have already lost.   They arrived at around 2:30-3am on Wednesday, Josh said the drive was not to bad and the kids slept most of the way. Lynkon played shy when he first saw me which was a stab in the heart but I had prepare myself that this might happen. Declan on the other hand was an animal and it took quite a bit to get him to settle snuggled in bed with me for the rest of the night. I woke up at 6am to head over to Spaulding (only the second time I slept not in hospital beside Aiden so I wanted to be there before he woke). I got Aiden ready for his rehabilitation class at 7 am. After Aiden was off to his therapy I went back to the Home-Away-Boston Apartment to help get the other boys ready too. As soon as I opened the door Lynkon came right to me with arms up for a hug. Then the tears really fell, I scooped him up and my heart felt the same flutter as when he was born. Once the boys were ready we brought them over to Spaulding and the tears and smiles flowed! Aiden was so happy to see his little brothers. It was not long that Aiden had to go MGH for his Proton Radiation, so I took the boys back to the apartment and Josh went with Aiden. When they had returned that night we all went over again and the boys cuddled up on his bed and watched Scooby-Doo (Well Lynkon crawled all over them and got in their way of the TV but that is just like home). 
The timing for the visit was great because it was the American Thanksgiving so Aiden did not have radiation Thursday or Friday AND he was allowed to go to the Apartment! I got him ready and after medication and instructions Aiden and I headed over around 9:30am. They sent a syringe with us so every hour we could push 60 cc of water through his G tube to help him stay hydrated so he could stay out longer. At this point he was not cleared for anything by mouth. This was a huge step for us as a family. Having Aiden out of the hospital but also a glimps into what it would look like when we got home. Having to feed through a feeding tube. Aiden is already a very sensitive kid and HATES when his tube is touched so we really had to explaine to him that if he did not let us give him water through it then he would have to go back to hospital. That he needed to work with us and help because we all just want to be together and this was good practice for when we get to go home and so that we can go home! The day went by pretty fast. We watched a movie, played “guns” (were declan put on a force field). The hardest times of the day revolved around meals/snacks. I never realized how much of our life revolves around food. Declan saying he is hungry so he has a sandwich, or a plate of dinner, or a candy but how do I tell him no even though I see it in Aidens face how much we wishes he could eat and how hard it is for him. We did give the kids freezes and Aiden was able to hold it and have some but even that was incredibly hard for him. I think of the hundred of freezes he had over the summer…. I had offered him a yogurt when the other kids were eating (which i had seen him eat no problem before) but he did not even want to try. Something that use to be so easy was so difficult now. Something he see’s his little brothers eating no problem but he is struggling to hold the spoon. I can not even begin to imagine how hard this is for him but I know it is. Josh took Aiden back to Spaulding around 6pm overall it was an amazing day with more laughs then tears. 

Saturday morning we went to Target to pickup a couple items. Declan saw a gingerbread house and wanted to do it. I was a little skeptical at the time but I knew Aiden had good arm control with his right and thought it might be worth trying to put the candy on. Later that night we all went to the Family room, Declan super excited for the house and Aiden was full of smiles as well. I had Aiden open the packages and pour into cups which he did AWESOME! There was lots of smiles and joking around. You can see some of the photos below. What the photos do not show is Aiden breaking down and grabbing the house to smash it as the frustration built in him. The photos do not show me grabbing his arms to restrain him and yelling at him “just because you are frustrated you still can not break stuff!” The photos do not show me leaving the room so no one would see be breakdown crying.I finally composed myself and returned. Aiden had calmed down, Josh was distracting him with something else and I finished the house with Declan who was still beaming with excitement. And we were once again smiles and jokes, even if at times I felt like I could have won an academy award for acting happy as my mind tried to pull me into darkness.  
Sunday we were given ticket to the Boston Bruins Game from Home-Away-Boston (Ronald McDonald Charity). It would be the first time Lynk and Declan would see a NHL game. We told Declan not to say we were going to the hockey game in front of Aiden and explained that it was hard because there was still alot of stuff Aiden can’t do now but he will be able to do again eventually. I told him that we don’t need to lie to Aiden but we don’t want to brag that we are doing something without him. I can not even imagine what is going on in Declan head. I question if I am doing this right, saying the right things… Trying to balance a normal life for Declan while sugar coating the world for Aiden it is extremely difficult. We told Aiden we would be gone for the afternoon and let the nurses know we would be gone for a couple hours. We took the shuttle to the rink and Declan beamed with excitement. Lynkon was so excited he fell asleep. We followed the crowd and found our seats, stopping at the shop to get Declan a foam bear head he picked out and Lynkon a Bruins Touque. The game was great as we traded off Declan and Lynkon sitting  with each of us. I do not know why we needed four seats because the other two were seldom used. Saying I am not a big Hockey watcher could be the understatement of the year so it was comical me trying to explain to Declan what was going on and why penalties were being called but we had fun watching the puck and all cheered when “The Bear” team got a goal. We had drinks and candy and lots of fun. 
Monday back to routine, the Boys and Josh would be heading home the next day. Josh did the routine with Aiden, 7am PT, 8am OT, 9am Speach then off to MGH for Proton not getting back to close to 4pm. A long day but consistent everyday. I hung out with the boys, went for a walk, played board game with Declan, chased Lynkon trying to wipe his snotty nose. I also took Declan for a haircut at a real Barber Shop then we went to the mall to see Santa. (I was trying to cram in as much as possible, I even gave Lynk a haircut myself because I could not not being there for his first cut which was  desperately needed) This would be Lynkons first visit to Santa I could not imagine missing it. This was also difficult though… I asked the “elfs” if the boys could do separate photos and was told no (even though there was no one in-line behind us). The tears formed, as I tried to explaine my one son was in hospitals so I could not do a group shot without him. The tears streaming at this point as I started to argue with the elves who seemed clueless to what I was asking (yes I know I must have looked crazy and not being totally rational) Finally, Santa stepped in and said it was fine, I think for fear that I would start tramatizing the other mall children seeing a mother crying as kids visit Santa. I thanked him and Declan headed up to sit on his lap. Asking for Pie in the Face (but he wants to do cake so it is Cake in the face) Click, Click. Next little Lynkon dressed in his christmas sweater, first real photo with Santa. Click Click. I can’t fight the tears as I write this thinking of all the Sanata photos we have of Aiden. The tradition of a new photo ornament yearly of the boys on the big guys lap, together. The photos turned out great but once again do not show the tears and me arguing with elves in the middle of a busy mall. We retuned back to the apartment exhausted. Having the other boys here was such a different routine, tiring in a different way. 
Aiden seemed to be very agitated that evening and still is (Friday), things we was doing before he does not want to try. Like eating or brushing his teeth I feel like we are at ground zero again. I have talked to the doctors and psychologists and it hard to say why. The last week consisted of losing all his hair, going off mood stabilizing drugs, seeing dad and brothers, and also into the fourth weeks of radiation and the effects that come with that. We did decided to put him back on mood stabilizer drugs as it was getting dangerous that he might hurt himself when the nurses are trying todo basic care. Today is Friday as I write this and I have had a couple more meetings with the doctors since the boys and Josh left but I will leave for another post. So now Aiden and I continue to check off the calendar – 2 weeks and the Boys and Dad will be back….then back to Canada!
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