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
Archives for November 2016
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)!
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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
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
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
The Update
A lot has happened since arriving in Boston on the October 27th and today, November 3rd To summarize, we have seen every health care provider under the sun, Radiologits, Oncologists, Dentists, Gastroenterologists, Dietician, Psycologist, Nerologists, Doctors, Anesthesiologist, Nurses and many, many more that I can not remember. We have transferred to the Spaulding Rehabilitation Centre, we have had our radiation mask made and all the preparation now complete, we have had numourous CT Scans, MRI’s, Ultrasounds, Xrays, Blood Drawn, EKG’s, Swallow Tests and more. Everyone here has been terrific. I was able to get outside over the weekend and I must say Boston is BEAUTIFUL! Flying in I remarked how much water there was, I was quite surprised I never knew there was so much water in Boston and now I have learned is to part of the Atlantic Ocean. Out our window at Spaulding we can watch the cruise ships head off to Quebec and I am told in the summer they head to Bermuda. Watching the boats reminds me of growing up in the Country and hanging out at the locks. Although those boats seem tiny in comparison now; but alot of things seem tiny in comparison now.
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Never in a million years would I have imagined this life we are living. All the times I complained about life or thought I had the worst cold or flu in the world seem trivial. All the “stuff” I have accumulated over the years, decorating our home or buying toys for the kids or purchasing new clothes seems so unnecessary. I have now lived in one room with one small carry-on suitcase for 52 days now and although I still need my morning and afternoon coffee I do not miss much. I have been asked If I needed anything to keep me occupied, knitting, books, etc. But in the truth I have not had much time. Between appointments and getting up and ready and sneaking cuddles or a thumb wrestle with Aiden there really is not much free time.
This last week has been a challenge for both Aiden and myself. Getting into a new routine, meeting so many new people and being so far from our family and friends. Aiden has not said anything else but is getting better at his non-verbal communication. We are working with iPad Apps, cards, pointing, smiles we are trying it all. It is so hard to watch him like this. Looking through videos on my phone from the summer and seeing his chatty, vibrant self seems so long ago. I feel waves of sadness and disbelief wash over me and the thought of never getting back to that seems all to real.
Trying to take a picture of the “Thrush” thinking is Aiden saw it he might let me swap his mouth more… not happening
I met with the child physologist at Spaulding last week and we talked about Aidens personality before this, his “baseline”. I am told in cases of Posterior Fossa syndrome the baseline is usually hightened. For those who know Aiden, you may smile, you would know that he is already a very “Spirited Child”. The best description I think of is from our family doctor when Aiden was 4, she told us, “If he was a 30 year old CEO he would be extremely successful but unfortunately those skills are not sought out in Kindergarden. ” Aiden can light a room with his smile, witty jokes and inquisitive mind but he can also cause people to duck and cover with his roar. He is easily frustrated and can go from 1 to 100 and 100 to 1 in a flash. After speaking with the Physcologist (for over an hour) he asked if the school ever pushed for medication as it sounds like he could be on the tip of the “spectrum” (ausbergers), but very mild. He also talked about the negative effects and overuse of labeling a child with ADHD and the use of Ritalin which is over prescribed.
Prior to this meeting you could say I was on the depths of despair. The night before, I smothered myself in my pillow, muffling my cry. I could not get the image of him jumping off the dock, making crazy science experiments and telling us exaggerated tales out of my head. All I could see was him forever in a wheelchair unable to talk or walk. I felt so hopeless. This was the first time I had cried in 2 weeks; I felt like I was lossing my record, I felt guilt for this moment of weakness. The last week had been so challenging. Aiden had kept spiking a mysterious fever and had not been able to keep anything down. He just seemed so sick and miserable, rightly so. He would scream at the nurses and the rehabilitation team every time they tried to do something. Making it so difficult to tell if he was in pain or if this was his explosive personality coming out. I even had the fear that we were going to get kicked out of Spaulding because he was so sick and hard to work with. I was also told that he had gallstones and they were suggesting a G-tube; which is another surgery where they put a tube right into his stomach and feed him through that. I was scheduled to have a meeting with the pediatric surgeon on Friday. Aiden also has something they call thrush which is a yeast build up in his mouth and has to do swabs of a medicine 4 times a day. The morning meeting with the psychiatrist could not have been better timed. He told me that he has seen many cases like Aiden’s here. He said he should not say and can not promise but the general feeling is Aiden will WALK out of here in six weeks! I could not believe it when he said this. So many times I’ve told myself six weeks is not long enough, what can really happen in six weeks. Hearing him say this I felt disbelief but I started to feel hopeful again.
Little body warm against mine, bringing flashback of a little bundle and endless snuggles.
They say there is a plan to everything but this I do not see.
My fiery little conquer, once so bright with a shining spark now fading into illness.
Glimpse of his bright self seem fewer everyday.
If I could go back in time I would never put him down, never say just a second if I only I had known.
They says that I am strong, that they don’t know how I do it but I am not and I have to choice.
A gun up to my head, sink or swim, fight or wave the white flag.
Everyday there is something new and I know there is more to come.
To see another child ring the bell and tears stream down my face.
It is a sign of winning, of competition, but they look like they have lived a war.
A battle not meant for the weak but has no discrimination.
Battle scars, sunken eyes, shadows of themselves.
So we sit and watch the boats with bucket close in tow.
My extremities start to give, he is in not the tiny bundle anymore but one more minute does not seem long enough anymore. #longday #childhoodcancerawareness #medulloblastoma