I feel terrible for our poor girl. She is pretty much in misery most of the day and ALL of the nights here since her chemo. I am fairly certain it is the methotrexate and it is causing severe belly pain for her...and at night causes some very violent vomiting. We haven't slept much at all since Wednesday night. It is really starting to show on her (well all of us). Her eyes are very sunken with purple rings around them. She just looks sick. And she is sick. It takes a lot for me to page the oncologist on call..especially over the weekend....but I did as I could not take seeing her in pain any longer. I talked it through with Dr B and he gave us a new med which is supposed to help with stomach spasms...which is what he thinks is going on with her. It may have helped slightly, but not too much.
As I said before, I knew this was coming. It took her eight days to recover from the last dose, which was lighter than this. Day 9 was ok (remember the bike??).. and then day 10 they hit her again. During the days, it is bearable, only a few bouts of tears with belly pain or leg pain. Generally on the couch all day, which gets old, but not sure what else to do. We are getting a few bites to eat in her. Not much, but something. But at night it is like Jekyll and Hyde or something. She is much more miserable. There is not much we can do to console her and she lies a lot of the night moaning and/or crying and/or vomiting. Jerad and I are both up..and then when we compare notes in the morning we realize that we have both gone in to help her about 5 times...usually one of us ends up sleeping with her for part of the night. We are completely exhausted.
She is still getting her nutrition through the IV. I have graduated to being able to prepare the bags/pumps on my own now...no home health care to assist me. I have it down pat now and have pages of instructions to follow if I get confused. But it honestly takes me no less than an hour to do it. I am pretty careful, but it is also a lot of stuff. I told Jerad that I could make a really good meal in an hour, but instead I am doing this and things are just not getting done around here as much. Although it is a pain, it is currently keeping her afloat, and giving her stomach a much-needed rest. She can just eat when she wants to.
I am sorry to report that she is not doing well. I almost feel bad telling people, but then I realize that no one feels as bad for her as I do. When people ask, I am honest and I really don't know any other way to be.
There is one piece of good news that I can report....she saved up her strength all day Saturday in order to attend her best friend Madison's birthday party Saturday night. I wasn't sure how it would go...but it was just a couple of girls and they were doing spa treatments. Very low key and perfect for her. I even went for part of the time to give pedicures to the girls. She ended up lasting a really long time....and I knew she was in good hands. (I do believe that this is the only place on earth that she would have gone that day...she even missed her annual family fun day at her school the same day.) I was happy that she lasted so long...diversion is a very good thing with these kids. Here she is getting her facial:
So I am praying praying praying that the worst of this cycle is over and that she can finally get some rest tonight...even up just a couple times would be good. Jerad and I are talking like we have a newborn again...trying to figure out any possible time that we can sleep. And on that note, I hear her crying already and must run....
As I said before, I knew this was coming. It took her eight days to recover from the last dose, which was lighter than this. Day 9 was ok (remember the bike??).. and then day 10 they hit her again. During the days, it is bearable, only a few bouts of tears with belly pain or leg pain. Generally on the couch all day, which gets old, but not sure what else to do. We are getting a few bites to eat in her. Not much, but something. But at night it is like Jekyll and Hyde or something. She is much more miserable. There is not much we can do to console her and she lies a lot of the night moaning and/or crying and/or vomiting. Jerad and I are both up..and then when we compare notes in the morning we realize that we have both gone in to help her about 5 times...usually one of us ends up sleeping with her for part of the night. We are completely exhausted.
She is still getting her nutrition through the IV. I have graduated to being able to prepare the bags/pumps on my own now...no home health care to assist me. I have it down pat now and have pages of instructions to follow if I get confused. But it honestly takes me no less than an hour to do it. I am pretty careful, but it is also a lot of stuff. I told Jerad that I could make a really good meal in an hour, but instead I am doing this and things are just not getting done around here as much. Although it is a pain, it is currently keeping her afloat, and giving her stomach a much-needed rest. She can just eat when she wants to.
I am sorry to report that she is not doing well. I almost feel bad telling people, but then I realize that no one feels as bad for her as I do. When people ask, I am honest and I really don't know any other way to be.
There is one piece of good news that I can report....she saved up her strength all day Saturday in order to attend her best friend Madison's birthday party Saturday night. I wasn't sure how it would go...but it was just a couple of girls and they were doing spa treatments. Very low key and perfect for her. I even went for part of the time to give pedicures to the girls. She ended up lasting a really long time....and I knew she was in good hands. (I do believe that this is the only place on earth that she would have gone that day...she even missed her annual family fun day at her school the same day.) I was happy that she lasted so long...diversion is a very good thing with these kids. Here she is getting her facial:
So I am praying praying praying that the worst of this cycle is over and that she can finally get some rest tonight...even up just a couple times would be good. Jerad and I are talking like we have a newborn again...trying to figure out any possible time that we can sleep. And on that note, I hear her crying already and must run....
UPDATE ON MON MORN: We ended up having to take her to the ER in the middle of the night. Let me rephrase that. She begged us to take her to the hospital as the pain was so severe. After testing in the ER, we found out she has pancreatitis...a side effect of this drug and the culprit behind the violent vomiting and pain. I am not sure what they even do about this, but they are currently in the process of admitting her. Please pray for her to be relieved from the pain.
Sharing the good and bad is part of the process . . . don't apologize for any of it. This online journal will allow you to remember each step and when you are on the other side of this reflection will be so important. I wish I lived close to you so I could hop over and really help you, but living in AZ e-hugs will have to do for now. Can you feel them?
ReplyDeleteAmanda
Saying lots of prayers for sweet Ally this morning. So sorry she is having such a hard time. Hopefully now that they have discovered what is causing her pain they can help relieve it. Love to you all.
ReplyDeleteI have been thinking about you all morning as I know how difficult today would be. Then to read this update... makes me physically ache for you all. I pray that her tummy feels relief soon. I hope your hospital family gives you enough help so you can sit and drink a cup of tea and breath.
ReplyDeleteKac is unreachable now which means he is on his way home...but I feel physically sick and have a hard time breathing knowing he is in and out of bases in the night moving by helicopter.
Dreaming about watching our kids run around this summer and sharing a summer cocktail with you.
Hoping the afternoon is better than the AM for Ally.
Hugs and Prayers,
Jenn
I am hoping and praying that this Monday afternoon finds you with relief from all that pain and some rest for all of you. You do not need to apologize for what you write, that is what we are here for, for you to write and us to listen, good or bad. At least now they know what it is and can give her something to make her more comfortable, sweet Ally we are all praying for you. So glad she got to go to the party, loved the facial, that was neat. Here is for better days ahead, prayers, hugs and kisses to you Janel and your entire family.
ReplyDelete