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 <email@example.com>
Date: December 14, 2016 at 9:53:58 AM EST
Subject: Re: Home
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?)
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!