My little girl has finally rolled from her back to her side and is resting like a little angel! I think I thought those same words when she was a toddler. After her incredibly gruelling day, she finally feels comfortable in a small way. After a restless night, she awoke with stomache cramps and pain in her chest. The doctors were anxious to get going with the chemo, and they were not prepared to take no for an answer. The poor nurse on duty today had her work cut out for her, as she took the tough love approach and finally got Michellie to consent to start the cocktail. Michellie loves taking pills as much as she loves her IV, and when the start of chemo was to swallow 8 pills, we were off to a rough start. Mom had to leave, and Dad stuck it out to get each piece down on a spoon of apple sauce. After a half hour, the mission was accomplished. Then, they brought in the big arsenal. Four different concoctions were mounted onto the IV rack, and the nurse came in with armor on - that was a big hit for Michellie - the tears began to flow. She did not take kindly to the drugs, and soon the nausea was creeping in for a long afternoon. Dad got this chore, while Mom took a back seat. Amongst all of this fun, our nurse coordinating our next four months was trying to get our details to us, and the nutritionist was trying to confirm vitamins we could use, and the social worker was trying to get a chance to get to know Michellie - (not really showing her best side today). Full craziness - we thought we had left that life behind already!?!
What did we learn today? For our daughter, who hated the seams on her socks to rub in her shoes, and who didn't like seams on her pants, and who only liked soft fabrics for her shirts, we realized that she is hypersensitive. Bandaids, port-o-caths, tubes, fabrics, feeling of hot or cold entering her body with the chemo, dry skin, dry throat...all were causing her great distress. As well, Michellie always believed as a little one that if you threw up you would die. As a teenager, she knows this is not true, but it doesn't make the dread any less, and with such an afternoon she could not imagine how she would get through 4 months of this. For now, there are 6 more pills to be swallowed before 10:30 pm, and she is not prepared to wake up - I don't know how we will succeed with this one tonight.
How did Mom and Dad fare? It was a tough day. We were not prepared for how sick she was today, and for all the pain she felt, and in all the different places. We missed breakfast and lunch, and before we knew it we were into the full afternoon of chaos. We realized we have to be a better advocate for her, as she finds it hard to ask for more pain killers and she has a tough time describing or putting into words how she feels. And, you can hold the bucket, but really it is soooo hard to just watch your little one in so much pain. We had tears today, and we did have a few smiles. At the end of the day, we know that the worst is behind us for the start of chemo, and we hope that when she wakes in the morning she cannot remember most of today.
Our highlight today was a little tree that was given to us and that we could decorate - it now is beside Michellie and sparkling. And, we discovered an amazing hamburger joint - Darryl's. They had Peanut Butter Burgers and Salza Burgers, and old fashioned Milk Shakes. It was different than Pete's in Calgary, but we sure enjoyed a few moments of peace at 9 tonight, when we could catch up together and take a moment to enjoy the morsels.
Tonight David gets the flippy chair, and I get the little day bed. We hope Michellie can sleep through the night and that we see a familiar smile on her face in the morning. Good night everyone.
It can only get better. A hard read of a hard day-good for you both for hanging in there. Can you even imagine how single parents cope?
ReplyDeleteSleep needed all round.
Love to you all, Gram.
First day of a new way of dealing with life. She's got discomfort coming at her in a whole new way, and hope as you do, that tomorrow will be better. Pulling for you kiddo.
ReplyDeletep.s. Can't someone fix that tippy chair? Maybe the room next door has a better one ;)
Have a good night.
We feel very privileged to be able to tag team. I cannot imagine how someone as a single parent could do this, and work, or be on assistance - that is tough. And, the tippy chair - they are all like that in each room. Crazy!
ReplyDeleteHope tomorrow is a better day. Its very hard we know, you are both so strong you'll all get through this. Its so hard to watch you child suffer as we did 2 yrs but so different as it was a car accident with many injuries which did heal. There were days when i thought i can't do this any more..but God is good Praying for you all.You are on our minds all the time.
ReplyDeleteMy heart is aching for you both. It is wonderful for you all thogh that you are surrounded by so much love and support. Remember ..you have people you don't even know praying for you all.
ReplyDeleteMeg Sullivan
Such a rough day...I can't imagine. But so wonderful that you have each other to walk this path together. This can only strengthen the family. Blessings sent to you from NY. Stay strong, and it's good to hear that you are still laughing. Laughter is the best medicine, even in the worst situations. Lots of love Heather and Soné
ReplyDeleteThis is a message from Bailey-(finally being 109 years old she has learned to talk)-
ReplyDeleteHi Michellie:
Don't you hate pills?-me too.
My humans keep giving them to me, hiding them under gravy and soup but I always find them and spit them out all over the floor.
They have 1 trick that works though-they roll the pill in peanut butter, and THEN wrap it up in cheese-so good, I can't resist.
Maybe you would like to try that?
Love, Bailey
I went to a prayer meeting tonight we spent quite a bit of time praying for all of you. Just wanted you to know that. And we will keep praying! Good things are going to come out of this. I'm sure of it.
ReplyDeletehugs,
Charmaine
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ReplyDeleteWhatever you do - do not crush the pred pills in anything to make them taste better - they tried that for me here for my 50 a day last year, and that was the worst 10 or 15 of the bunch! (Just made the choc ice cream taste horrible. Better to have them whole with a spoonful of ice cream or something yummy - and a few at a time to get it through faster. Hope tomorrow is a better day - we are all thinking of you. Hang in there.
ReplyDeleteRemind Michellie about the Disney parade and all that we did there - maybe a new distraction topic. Love, Auntie Char
What a tough day. I hope things start to go better. I wonder what would motivate Michellie to set aside her very real discomforts and recognize that this is about her very survival. For me, it was the newborn baby waiting for me at home that propelled me to do things through chemo that I would have never otherwise done. But it's hard to know what would have the same compelling power for a teen girl. Must be so hard for you as parents to watch your little girl suffer. A chemo tip is to eat as much as possible at breakfast before chemo starts for the day, esp proteins like eggs because this is probably the only time all day that they'll stay down. Lunch and supper are pretty much write-offs when you're doing hours of chemo but carbs and applesauce will sometimes stay down. Thinking of you and hoping for a better day...
ReplyDeleteWow! What a rough day you all had.
ReplyDeleteI agree with Sharon. Michellie - this is all so you can get better - do whatever you have to. I know it's hard and you don't like it... but it's the only way... so please be strong. Make it easier for your mom and dad - I know how helpless they feel. Let the doctors and nurses do their job... and make you well so you can come home soon.
We love you, Michellie. Show everyone how strong you are and how much you want to be back in your beautiful room in Hillsborough!!
Love, Linda xoxo