Man it has been an extremely long day. Starting at the hospital at 8am. Somewhere around 11 am: the spinal tap. This time it was not good with Ally screaming screaming bloody murder the whole time. A few hours later..and a few more chemo doses and Ally seemed to be coming out of the stupor of the meds. A big puffy face with big puffy eyelids as they gave her a bolus of fluid before the spinal...on top of her TPN. She was allowed to eat...her usual: a half a taco (no lettuce) and a baked potato. She wheeled herself in a wheelchair down to the inpatient unit. She had made some things for Amanda...and wanted to see Lincoln....oh and I finally got to see Maggie today too when I made a trip down to the ICU. She got to see her nurse faves Nicole and Beth and Miss Susan(...who is always Ally's nurse in AHU.)
Dr Dole confirmed my suspicion that the methotrexate was causing the diarrhea (8 days worth) and the belly pain. I knew it. I wondered if the dose would stay the same or if they would have to increase it. They had to increase it. So now I am feeling I have another week of this pain ahead of me. It is not a good feeling. If 10 days worth put her onto TPN, then what will 20 days worth do?? I am preparing myself mentally. It is all I can do right now.
So we got home from the hospital about 4...the home health nurse came to our house shortly thereafter. We had to mix up the TPN and the doctors decided she needed something else called albumin to be infused when the TPN is running. (Ally's protein level was too low) As if this process wasn't hard enough, now we have added another bag and another pump and another 5 pounds to carry around. UGH. But the worst part is that we worked and worked and couldn't get the pumps to sync up and infuse properly. So at 8 pm our nurse called the doctor and he decided we could wait until tomorrow. Pharmacy would have to figure it out. Thank you Lord for that because at that point I was very close to collapsing from exhaustion.
Just a long crappy hard day. And I am sad to boot...lots of people got to see me cry today. Sorry about that to all of you! I usually can hold it together, but I am getting sad thinking about my mom...it will be one year ago on Monday. If it feels this bad today, not sure how I will function come Sunday and Monday. I am one of those "relivers" Always have been. I relive every moment that I was experiencing at this time last year. I remember it all, in detail. And I wish I could forget it.
To top it all off, shortly after I went to visit our girl Maggie in ICU, she had some major problems. They just transported her to Cincinnati a little while ago. Please pray extra hard for her and all the kids who are battling cancer.
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Janel, I knew the anniversary of your mom's death was coming up. I just couldn't remember when. I'm one of those "re-livers" too. I will be thinking of you and saying extra prayers for you this weekend...And, of course, for Ally, too as she endures another round of tough chemo. You are doing a wonderful job, Janel. You are an amazing mother. I know it's been difficult (understatement of the year, I'm sure), but look at all you have had to learn and do for your daughter. You are saving her life!
ReplyDeleteUgh, I didn't know it ended up being such a rough day. My rough day was yesterday, and even while going through it I kept telling myself this is nothing compared to what Ally goes through on an almost daily basis! I know it's going to be hard for a little while, just hold on. They must be piling on all the hard heavy stuff right at the end before she enters the maintenance phase which is coming soon!
ReplyDeleteI'm not allowing myself to remember a year ago--yet. We'll be ok.
I'm a 're-liver' too, and I will be sending extra prayers for you this weekend. I pray for sunny warm days to help distract you too.
ReplyDeleteI hope today goes well and that Maggie is doing better. How did you tell Ally about Davey? Is she doing okay?
Love to you all.
Janel,
ReplyDeleteI'm so sorry you had such a crappy day. But it's over now, and hopefully today is going better. I'm always amazed at your ability to prepare yourself and make everything work. You can do this. All of it, and so can Ally, Jerad, Evan, Carly, your dad, and Melissa. And Ally will beat it.
My re-living day is today. My dad died 15 years ago today. 15 years, and I'm not going to lie, it still hurts. But I have decided that today I am celebrating him. I am celebrating the fantastic person he was, his love of beer, fishing, and b.s.ing (not to mention the bake sales at Cardinal Hill). I am celebrating the person I am today because of him, and when I look at Ella, and see him, I am going to smile today, not cry. That's what he wants. And your mom wants you to smile and know she's sending strength to you every day.
Janel- sorry to fill the blog up with posts, but this made me smile and I have to share. You probably didn't know this, but my dad was a country boy from southern Ohio and LOVED old country. I get this daily deal of baby stuff, and today it was two CD's of Johnny Cash and Willie Nelson lullabies. I couldn't believe it. See, they are looking out for us.
ReplyDeleteJanel-One way we remember my mom is by having the kids send all of their balloons to Grandma Susan in heaven. We tie notes, or decorate them with I love you's and miss you's and it makes me smile to think that my mom has the biggest bunch of balloons just smiling down on us all! I'll be thinking of you and your family during this hard time and as always sending love and prayers for your sweet Ally.
ReplyDeleteBecky S.
Janel,
ReplyDeleteMy heart is breaking for you right now as you miss your mother so terribly. I know how hard this is. You have her strength inside you and you will get through all of this. Please let Ally know how much we miss her at school and that we think of her and pray for her every day.
Lisa Walk
Janel, my reliving day was two days ago as jodi said, it has been 15 years for us and it still hurts, and I did cry but I also thanked John for making me a better person and I thanked God for allowing me to be part of his life. I also thanked him for Jodi and my beautiful granddaughter Ella, who has his little nose. Your mom and John are looking out for us and giving us strength, and I know that your mom is looking out for Ally and she is especially proud of you and all that you are doing for Ally and your entire family. You are a wonderful, strong, and caring mother, wife, daughter and sister. I know she is helping you, just as John still helps me each day. I am sending extra prayers your way for the next ten days, there are better days ahead. The Army marches on!!
ReplyDeleteSending you loving thoughts to get through your reliving days of Sunday, Monday and all the others!!! Somehow your memories as hard as they are th think of these days and all the love your mother gave you will get you through these days. She is there still holding your hand and heart as she so often did so many times before. I know you can feel her. You are so loving and caring because of her. Also you have that unbelievable strength.
ReplyDelete