Friday, September 14, 2012
Day 3 of radiation was basically a repeat of the first 2 days. The chaos in getting Dillon up and ready and over to the facility, and his feeling soooooo incredibly terribly horribly nauseous with copious vomiting all day long. The radiation oncologist told me that Dillon is definitely on the extreme end of the spectrum with his nausea and vomiting. Just great....again my boy is outside the norm and is suffering terribly....I just HATE that. It is an utterly helpless feeling....not being able to do a single thing to help him feel better. He was not even able to enjoy the fact that he could remove all of the stickers from his body that were placed for the radiation markings. He had so looked forward to that moment for almost a week. Those stickers bothered him all day long every day for almost a week and he was only able to give a nod and a very small smile when I asked him if he wanted me to take them off. I had to fight hard to not let the tears roll down my cheeks and hit his skin while I peeled a total of 70 stickers off of my boy's torso.
Yesterday evening we got moved to our new permanent home on the BMT unit. We are in a corner room with extra windows that wrap around the end of the building. We have amazing views of the city and the mountains. Dillon was relieved to finally be at our destination and had an evening and night of no vomiting....maybe some of those nervous and uneasy feelings that plagued him all week were lifted and he was finally able to rest. We both slept fairly well our first night here in our new room.
Today is Friday, September 14....the day we were supposed to be admitted to
the hospital. A thought just struck me....it feels kinda like when I was
preparing for Dillon's birth. I had all of these plans based on this
arbitrary "due date" that I was given. When to stop work,
when to order the crib, when to paint the room, when to install the car seat, when Sean should be available, on and on......and when things did not
go as planned I felt completely thrown and confused and just sort of not able
to adjust at first because I had my head set on the dates and timing that were
previously given. So, it kinda feels like that...I am sitting here
thinking....we were not supposed to even be in the hospital until today and
look at all that has happened here already....it leaves me shaking my head in wonderment.
Dillon woke up this morning and did not vomit....finally.
However, the anxiety and worry about today's procedure (a lumbar puncture in a
new place, with new people, in a room he had never seen, at an unforeseen time)
just threw Dillon into a state of angst. Of course he "performed" beautifully.......followed by dizziness, which caused nausea, which caused vomiting because of the anesthetic used during the procedure.
A couple of hours after recovering from the LP, the first round of chemo began. He will get 3 days of one kind of chemo and 3 days of another. Today was day 1 of ATG (so tomorrow is day 2 and Sunday is day 3); tomorrow is also day 1 of the second kind of chemo (Sunday is day 2 and Monday is day 3). Tuesday is a "day of rest".....and wednesday.....my boy gets his transplant.
Yes of course, he is sick again this evening from the chemo in his spinal column and the ATG that has been dripping in all day. This poor child feels like he will never feel better, will never stop vomiting, will never eat and drink, will never enjoy life again. He is sad and frustrated and angry and worried and scared and lonesome and tired......my heart is breaking. This is the hardest part they say....this is the scary terrible stuff that I have heard about and read about....this is cancer and this is a bone marrow transplant. As my sweet friend Grietje reminds me....
We are walking through this....we are doing it.....we are getting through....this IS the cure!!!! But my Mama brain is screaming.....HOW MUCH CAN ONE CHILD TAKE????
Awww so sorry to hear of Dillon suffering from the nausea so bad. Poor little guy! We are all rooting for you all, and know that this will all be worth it in the end, when Dillon is healed completely and back to his normal happy life. Thanks so much for keeping up with the blog even on the difficult days, it is good to know what is happening.
ReplyDeleteAll the best,
Niranjan and Uttam
I have to agree with Niranjan with you keeping us informed even when it's difficult to think about more/less write about. Thank you. One day we'll all be looking back and shaking our heads about the journey you've all taken. For today we pray and continue to send uplifting thoughts. Hugs, love and prayers from Aunt Marilyn
ReplyDeleteThank you for the note Dillon. I might try to call to give you these thoughts but I will put them her for your mom to pass on and i so hope they help. I know this is the hardest thing to do, fighting this cancer. I have no idea what you are going through. A friend once told me when I was really hurt and trying to heal after surgery to find a goal in your heart and when it is really bad look to that goal. Hold it in front of you, front row seats at a Celtic game, Wooshing down the hillin 2 feet of powder on your snow board, making the last shoot at the buzzer to win the game. What ever it is that you want, a goal that you can achieve and can realize in the future, a fantasy to take you away, your precious spirit away from the pain for even just a few inutes. Your body will be fine with "you" there while you fly off to you dream. There are plenty of people looking after you. Find that dream hold it, souround it with the most golden light you can manafest and focus on that image for a little while really feel it really big in front of you or even you totally inside it. every time the pain or nausea or down feelings get ahold of you go there, have more than one if you need to. And ask in your mind or evven out loud "Angels, spirit guides, peacefull warriors, please help me to make it through this, please lend a hand to me and make me whole again." This my dear nephew will help and they will come in droves and dozens to help you on your path. Ihave been sending them to you for months now and there are many more at the ready to take away the pain and bolster your strength. You are going to make it through this and be an even more amazing young man than you already are. You will go on to help so many others through their stuggles. I love you with all my hear Dillon Jace Buckley and I am hear cheering for you and rallying all the angels and spirit guides and healing warriors that I know. Use them young man and let them lift you to health. May you have the strength of 1000 men to endure this ordeal. You can do this. We are here for you. Love Uncle Todd.
ReplyDeleteThat was beautify Todd. Dillon - he is right. Like so many things, we are unaware of what the body is able to do. Too often it is our mind that defeats us! You can do this! Find the wonderful memories, visions and dreams in your head. Focus on them and not all the yucky stuff.
ReplyDeleteRemember it's ok to be mad, scared and frustrated. That means you are NOT giving in to it and are STRONGER than anything you can possibly imagine!
Much prayers from AZ!!!!
of course that first line is not well done at all, LOL. It should say "beautiful". I can only imagine what my fingers were thinking :)
ReplyDeleteBlessings to each of you for you powerful and kind words on this post. They are in our hearts and helping us through this challenge each minute of the day. We love all of you so very much!!!
ReplyDelete