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.
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.
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