I have tried my hardest to get into the holiday spirit for her as I felt this year was extremely important as it has put into perspective just how quickly your world can change and felt that the holiday needed to be celebrated in every sense of the word, but being out of work was proving to be difficult to accomplish that task.
What a lot of people don't know, is that I had to sell a lot of our possessions to be able to afford what little I was able to give to Arley and other family members for gifts. Not my proudest moment, but it is what it is.
I have always been the most generous this time of year by giving to multiple organizations and always try to Pay It Forward as much as humanly possible. A lesson I have taught to Arley since her first Christmas at just three months old. (I feel like it's never too early to teach this lesson) And it had been eating at me as to 'What was I going to do?' this year for Christmas?
Unfortunately though this year was rather slim pickings as far as me affording gifts. I know that it's the thought that counts and the season means way much more than how many gifts one has to open under the tree, but still I just couldn't help feeling as though I was failing somehow.
Around September, shortly after returning home from Boston, I approached the social worker at CCMC and asked if she knew of any places I could get Arley's name out to that could help us out for the holidays. This was a very hard pill for me to swallow. To admit that I needed help as I was just barely able to put together her birthday party. She asked some basic questions about what Arley was into, her clothing/shoe size etc said she would see and we left it at that.
Meanwhile, unbeknownst to me, there were Holiday Angels working very hard behind the scenes to ensure that both Arley and I were taken care of. For starters the photographer that took Arley's horse photos over the summer (Christina Houser Photography) told me that she wanted to help in some way to make our season brighter and put together a Wish List for toys for Arley and she would get the word out. Boy did she ever!
Another friend put the word out that everyone on his Facebook friends list should send Arley Christmas cards to help cheer her up and believe me they did. We have read together every single one.
Lastly Connecticut Children's Medical Center gave Arley the most joy this holiday season when they donated the bike that she has been asking for since Easter.
I have been overwhelmed by the kindness and generosity that has been pouring in ever since. To be put into words is incredibly difficult how my heart has been bursting with just how many strangers have taken to our story and wanted to do something just for us. It's all just so amazing if you ask me and I am very grateful and thankful to the moon and back...
As far as Arley's progress on this journey, this week we took a huge step back and is what also contributed to this being the hardest month for us. This week we were inpatient at the hospital for treatment so the hope for a quick in and out to be home for the holiday was very important to me, but I just had this strange feeling in my gut that something wasn't right. Call it mother's intuition if you will.
To make an incredibly long story short, Arley basically started rejecting her medications, most importantly her nausea meds which helps to bring back her appetite as well as not get sick off the chemotherapy she gets bombarded with. Unfortunately she has either become immune to them, or something much deeper is transpiring because I have never seen her like this.
So pale, so tired, so sick. It made me very worried because this is not something we are used to happening and it's somewhat unheard of to start having these reactions although not uncommon if that makes sense. I made the nurse contact her Oncologist because I needed to hear from him something to put me at ease because the doctor that was on her floor wasn't helping the situation at all. With talking to him we have decided to forgo some of her usual meds and try her on some new ones and see what happens.
One of the down falls with putting Arley on the new medication is that it makes her extremely emotional. kind of like how a pregnant woman gets with all the hormonal changes. She will be in the middle of doing something and for no reason at all start crying and continue to do so for about 10 minutes until she eventually calms down. While it sucks to see her go through this emotional roller coaster, I would much rather wipe away her tears than vomit that's for sure.
Next week I will have to have a very long conversation with her doctor about this and see what we have to look forward to in the next three weeks when she goes in patient for treatment again. I would really like to avoid a repeat.
Because of her over emotional state we haven't really been able to enjoy Christmas just yet. She opened up a few presents and then got too overwhelmed and starting crying so we will have to try again tomorrow or over the weekend when she has time to adjust to what's gone on over the last several days.
With all that being said I'm happy that we are finishing up Christmas at home and in our own bed and not spending it at the hospital like we started out the day with.
Here's to wishing all of Team Arley Sage a very Merry Christmas. Until next time...
No comments:
Post a Comment