Stephanie's Development Site

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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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Groundhogs Day

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We left for hospital at 9:30 am this morning, after OT at 7 and PT at 8. Once again waiting, sitting in the MRI room; yellow walls, contemporary pale olive colored chairs. I wonder what studies have been done to determine the best color for waiting rooms, but truly I wonder what the results will show. We are now in our third week of treatment, halfway there. The last MRI (when we first arrived, before treatment) did show more leasions and growth but Dr. Y did not seem concerned saying this did not affect protocol or outcome, although in my head I felt doubtful. So here I sit again… LONG WAIT…I feel like I am getting better at this though. They said hour and a half so I set the timer on my phone for an hour, went for a walk, stopped at Harvard Garden pub right next to hospital for something to eat (Fish and Chips) and a “Nor’Easterner” Cocktail (pomegranate vodka, Ginger beer (not ginger ale) and cranberry). Chatted on the phone to friend back home so I did not feel so alone eating by myself, before I knew it my alarm buzzed. I paid the bill and tracked the block back to hospital.  It felt good to get outside in the crisp air, I can still feel the red on my checks from the wind as I now settle in the waiting room. 
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I met another mother today in the waiting room at Proton Treatment today. Her daughter is 3 she had a “type” of medulloblastoma but with something else, behind her ear. Did the surgery, they said they got it all but still had to do 6 months Chemo and now radiation to make sure it is all gone. Listening to her talk I felt so bad knowing how bad radiation in on such a young developing brain, but what choice? I told her about Aiden, being from Canada, the surgery, how he developed Prosteria Fossa Sydrome after the surgery (no taking, walking, etc.). She told me there are two other kids here right now with Medulloblastoma; one is 2 and the other a 13 both boys. I know who she is talking about from the waiting room due to the distinguishable scar. I recall them because I have seen they talking, running, walking, snacking, as Aiden gets pushed into the room on a stretcher everyday. I ask myself WHY? Why could he not JUST have cancer, at this point cancer does not seem like the worst thing. “The incidences of cerebellar mutism syndrome in children who underwent surgury is estimated only between 8 ad 21%” Aiden seems to fall in this minimal percentage. Everyday I watch Aiden trying so hard. Three hours of intensive rehabilitation a day then in an ambulance ride to the Proton Centre where we stay for the next 2.5-3 hours while he goes for the treatment and then back in ambulance to Spaulding Rehabilitation Hospital again. I feel like I am in a messed up version of Groundhogs Day, a wash, rinse & repeat cycle. The improvements he has made are amazing and I know I need to stand back more often and look at the bigger picture, not comparing from the summer but from ground zero. 

When he first came out of surgury he could hardly lift his arms, today he used a walker and walk almost 20 feet (screaming the whole time but did it none the less). On Saturday we has “Speech/Swallowing Class” where they tried to clear me to feed him purée snacks. He ate 3 spoons of yogurt very well but the radiation is catching up on him and the nausea took over our session. We will try again this weekend (it is really hard because everyday he gets put under for treatment so is on DO NOT EAT list for 6 hours prior, this makes our windows to practice few and far between). We found a new ipad game with sharks that swim and eat people and fish, Aiden uses his thumb to control the shark and taps for a boost. We also found a keyboard which lights up and he seems to LOVE! He is starting to gain strength in his LEFT HAND!!!! He can also hold a pen in his right hand better then ever before and we are working on writing again, learning his Name all over again. Everyday there is something new and I know he is working so hard. I tell him everyday how incredibly proud I am of him.
[wpvideo zJ1A0rrN]​Anyways, I have just been called back Aiden is waking up (2 hours later) from his second “nap” of the day. Next step to wait for results. 
We arrived back at Spaulding at 7:30pm – if you did not catch that it was a VERY long day! 
Wash, rinse, repeat again tomorrow

Music Therapy

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We found a keyboard and Aiden seemed to love it! His right Arm and hand has improved sooooo much! He is holding a pen now BETTER then ever before (before surgery)!

no title….

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A hard slap of reality, I had almost convinced myself that Aiden would not lose his hair…. for some reason I thought since he was born with so much hair his hair cells would overcome the radiation. I know this may sound silly…. I am pushing down the tears and making jokes to get Aiden to laugh protecting him a bit longer, quickly hiding my hand, hiding the truth as I rub the #Aquaphor down his spine and scar on back of head from surgery like we do every night….but this is not like every night… this is hard… this is real

November 19th, 2016


6 months old and had to cut his bangs 3 times! He reminded me of a “Beatles”

First week at home, pretty comfy… silky black hair I questioned whose baby this was he reminded me of a Eskimo

Minutes Old

10 Things I Have Recently Realized 

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10. Communication is essential but verbal is a small part . With Aiden’s voice still missing we have learned there are many forms of communication but the most important thing is being able to communicate. We have worked so hard to figure out our own way, thumbs up, pointing, picture boards, iPad Apps, Smiles, reading body language, facial expressions. This has greatly decreased the number of blow-ups Aiden has had. He is able to let us know if tired or hurt or even just Ok. He is working on finding his voice again but in the meantime we work with what we got.
9. There is a so many different types of Cancer and Tumors and a lot of kids and adults are going through this! I don’t know if there has been a sudden increase or if I just realize it more, like when your pregnant and you see pregnant women everywhere. I now see everyday in the news another child is getting diagnosed. It does not matter how much money you have or how old you are. Beverly Hills star Shannen Doherty, Michael Buble son, Sens player Craig Andersons wife; all battling with cancer in their lives. The battle is not fought alone. The list is endless….
8. Kids are tougher then we give them credit for. We live in an age where we try to protect our children so much we are robbing them of their strength and independence. By allowing a child to fall, they learn to get back up but instead we have taken away anything deemed “dangerous”. Seldom do we see kids outside running and playing freely in neighborhoods. I can assure you more children have died from cancer then falling off playground equipment or from getting fresh air. Last Friday Aiden had Gull Bladder removed, G Tube stitched into his stomach and a Broviac IV line placed into his chest by Sunday he was not on anything for pain and smiling! Kids really are resilient.

7. Patience is truly a virtue. We live in such a fast paced Information Age. If we have a question we pull up our phones “hey Siri” and instantly we have what we want, where we want to go, etc. Sitting in the hospital you don’t google for fear of learning the wrong thing. You are constantly waiting, for test results, doctors, transportation, treatment, a cure and there is nothing we can do to speed this along. I can only have patience, faith and hope.
6. We surround ourselves with too much “stuff”. Arriving here in Boston with only a small carry-on and a backpack you might wonder if I am missing anything. But truly, I don’t miss a thing. A couple changes of clothes that cycle through the laundry, a deck of war cards to play with Aiden, books to read and music from Google Play and YouTube and we get through our day just fine. With Christmas fast approaching my heart sinks a little. We would usually be decorating this weekend. I would be well into the Christmas shopping, of things that seldom get played with for long. If I think back to last Christmas I cannot even remember what gifts where given but I do remember the traditions: Baking cookies with Grandma, going to Cedar Hill Tree farm and getting the Tree, building an ice rink in our backyard with my dad, having a photo night under the tree where I look on Pinterest and try to recreate the perfect scene but we all end up being silly and just rolling on the ground together, the boys “photo bombing” each other. It’s not what presents are under the tree Christmas Morning. It’s the pretending to sleep while listening to Aiden sneak down the stairs then run back up to wake Declan up “Santa came!”  Running to our room in pure excitement. We have had so many offers for Christmas but all we really want is to be together, to hear Aiden Wake up his brothers, to have those memories leading up to Christmas that make our Christmas ours and that can not be purchased from a store.

5. People care and genuinely want to help. I personally find it so hard to ask for help.  I don’t know if asking for help makes me feel weak or that I think in order to be a strong independent women I need to do it all. I can say, without the support of our friend and family and even strangers we would not be in Boston right now getting Aiden the best possible treatment and rehabilitation. We have had so many people reach out to us, people I went to high school with and have not seen in 15 years, neighbors we had never met making batman quilts for the other boys so they do not feel left out,organizing  auctions and other fundraising events to take the financial burden off, sending heartfelt messages and chatting with us so we do not feel so alone and so much more. And I know people do not do this for anything in return for any other reason then that they genuinely care and want to help anyway they can.
4. Strength is more then physical. Sometimes it is just doing what needs to be done or just waking up each morning. It is holding yourself together for other to cry on you. It is a battlefield of the mind to stay positive and carry on.
3.  We are not special – there is a shocking number of children battling cancer or other serious illnesses. The hospital rooms are full; the icu rooms are full; livers, hearts, lungs, premature babies, cancer, there is no discrimination. Family’s lives are ripped apart, they travel across the world for treatments. I am not the only one leaving part of my family to take care of Aiden. I have met people from Saudi, California, China all with their own story to tell
2. Don’t sweat the small stuff. I can not even count the arguments revolving around “eating all your dinner”. An ongoing battle usually turning a pleasant meal into one with tears and yelling. I think back now and feel so silly. Did it really matter if my kid ate all his broccoli? Maybe he truly did not like it; either way he was not going to starve. I have now seen starving. Don’t get me wrong there are certain things that we need to teach our children to do in life but I think we put too much emphasis on things not so important. Aiden ate almost a whole pudding cup yesterday. The most he has eaten since September 21st. I see these children here fading away and literally can not stomach eating, the thought of forcing a whole plate of food is crazy and not even a consideration.  We celebrate they ate a peice of pizza or chocolate cake for breakfast, or ate only mash potatoes for a week because that’s what they could keep down.
1.  Appreciate the moment and cherish your life and those lives around you. Sitting, watching my 7 year old son go through this, everyday fighting to talk, walk, sit, to beat cancer  I have realized the importance of life and how fragile and taken for granted it is. In my life I have seen too many people battling with drugs and alcohol,  many who put a needle in their arm one last time, who get behind the wheel after one too many, who over indulged and are dying from self inflicted habits and it makes me sick. I like to say I was a “late bloomer” I had a “wild early 20’s”  living life without a care, I felt I was invincible. I realize now I was wasteful, I was not free I was Stupid. You only get one life, surround yourself with people who care, who bring out the best in you, see the good in each day, stop the negative talk, be thankful, help others, don’t gossip, forgive, create good memories, catch fire flies, sit and watch the sunrise, count stars, learn to be alone, learn to be in a healthy relationship, get active, give one more kiss, read one more story  at bed time, look in the mirror and smile, tell your family you love them, put down your phone, turn off the TV.

Thank you to all who have and continue to help on this voyage.

Let the Good Times Roll

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Amazing update for an amazing day! The day started off right away in his chair, which he can sit in unassisted now, we took a stroll and went to family room where Aiden held the remote and flipped through channels. This may seem so tiny but such a milestone. First to close his hand and grip the remote, then to move a single thumb strong enough to push a button, none of which he could do the week prior (It must be all the thumb wrestling)!
Next triumph in our day was having a shower. The benefits of being at Spaulding really showed themselves, OT brought in a kid size shower chair! Everywhere we have been everything has been huge, made for adults. Commode that Aiden falls into or a huge tub that Aiden has no control in. OT assisted Aiden in getting undressed and from his wheel chair onto the shower chair where he could sit with feet on the ground for stability by himself (although I was ready for the catch at any moment). She then gave us tips to make it more comfortable and enjoyable, such as placing a facecloth over the shower head so it was not so strong. Aiden already was not a shower person so this made a difficult task even more so. He did great and transported back to wheelchair putting on his own shirt then back to bed to finish getting dressed and to snuggle under warm blanket. 
A little after getting comfy in bed with a YouTube video he was pleasantly surprised by his grandparents who drove the 7 hours the night before to visit! His eyes lit up in what I thought to be surprise and joy at the same time! 
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The hellos where short when Speech came to take Aiden to his next appointment (this was at 9am, pretty productive day already!) he transported back to the wheelchair. Everyday he is getting that much stronger at sitting up and then pushing himself with all his might to stand and take that one turning step to sit into the safety of his wheelchair. I stayed and chatted with my dad as Aiden went off with Speech. 45 mins later transport arrived to take us to the proton treatment center so I headed to Speech room. Approaching I expected to hear the usual moaning in pain and frustration and who knows what but it was quite. I entered room to see Aiden beaming with a craft he had made on his lap! Later I chatted with Speech who said he did great, less and less moaning. No more words but she is working with him on feeling comfortable with the routine and hopes once the Ng tube is out he will feel that much better and she will push him harder at speaking.
With so little choices Aiden can make these days asking him  which toque he will wear has become our daily routine. Today he chose the orange Almonte one. With a quick transfer he was on stretcher and into ambulance on the way to the the Proton center, quite as a mouse but with smiles. After his treatment he woke up very good too, hardly any crys (the first time coming out from under he cryed/moaned for 2 hours which they say is very common with fossa syndrome). In recovery room the art therapist came in to see if Aiden wanted to do a craft; and he did! This was also a first there is so many things still very difficult for Aiden to do and  it is a constant debate wether to even have him try something he use to love doing in fear that he can’t now and then gets upset and sad. He did great art therapy! she had white clay and Aiden picked a color from a pack of sharpies and held the marker in his hand to color on the clay. They would then mush the clay up and it would change the colour. I was shocked and even more so on the fact that he was holding he marker correctly and even better then he ever had befor his surgery!
Heading back to Spaulding, I could tell he was beyond exhausted. Within minutes of getting back into bed he was hocked up to over and feeding tube and vitales were checked. Within minutes of that the Pysio. came in as it was 3 in the afternoon and time for his next appointment. Back into the chair with hardley a whine and off to physiotheraphy. I had an appointment with the doctors about the following days and his surgery for the Gj tube, Broviac (like a iv put stitched in to his chest and also used to administer the Chemo later on ). He came back from pysio an hour later beaming! He had done another craft, a thanksgiving turkey with trace of his hand in different colours for the feathers. After all this he was ready for a nap and back into bed. I went over to visit with my dad and sue while he slept. 
When I came back at 6:00 he was still soundly asleep and I debated waking him for a couple hour befor bed. I am glad I did because he got back into his chair and we went for a walk off the floor(another first). I showed him the pool and pictures on the wall of others “finding their strength”. Transitions from a wheel chair to walking again. Back upstairs we stopped my anothe room of a mom I had met and said Hi. Her 3 year old son had sesures from a young age and had just had surgery to remove half his brain to stop the seizures And his brain was rebuilding all the pathways again too. The boys watched The Good Dinosaur while the Mom and I chatted and drank Tea. A little while and I could see Aiden getting uncomfortable in his chair so we headed back to bed last transition for the day. I gave  him a kiss on the forehead and told him how incredibly proud I was of him today and within minutes he was fast asleep. I looked at the clock 7:30 he was in his chair for an hour a new record!
I do not know what tomorrow will hold so I wanted to post this amazing update and celebrate