Saturday, July 11, 2009

Hard night

Wow did we have a bad night last night. I hate to post about things that aren't going well, but this blog is not meant to be a happy-go-lucky story. It is real life. And I want to remember how things played out. I go back and check things from the past month on here all the time. So anyway, Ally is still having the dreaded constipation issues. She has decided that it hurts too much, so she is completely stubborn and just will not go. Even if she really, really has to. Jerad and I tried to go to bed at 10:45 pm. That never happens. We are the midnight sort of people. So sure enough, she started screaming, screaming at about 11pm. She screamed in pain for several hours. She would try to fall asleep, to make the pain go away, but it never lasted more than 10-15 minutes. About 2 am, after we had been back and forth to her room, the bathroom, begging her to go, demanding for her to go, Jerad laid on her floor of her room to go to sleep. Third night in a row that one of us (or both) have been in there to try to sleep. I think she did sleep until about 6 or so....restless though...and then another screaming episode. She continued to try to lay down and attempt to sleep most of the morning, but really spent a good part of it screaming. The chemo nurses were here from 9-10 and tried to talk her into going. The screaming is just blood curdling, like someone has put a knife in her. I can hardly stand it. I seriously almost run away...it is that bad. Jerad is stronger than me, thank god, and also has more patience, but it even gets to him. He said he couldn't hear out of one of his ears for a while this morning. I try to shuffle our other kids into one of their bedrooms with the fan on so they won't hear it. It is that disturbing. She did finally go to the bathroom around noon...13 hours after the screaming started. This is not a happy household right now. Jerad and I were just remarking about how little anyone smiles or laughs...mainly just when our friends or family come around.

Uncle Brad, Aunt Kim, and their 4 girls came for a visit this afternoon. It poured rain all day so we just sat in the house and visited. About dinnertime, Ally decided that she wanted Panera chicken noodle soup so all 11 of us went out. (her ANC was actually high enough, but not for much longer) What a sight...they have twin one-month olds (and two other young girls) and there we were with our bald child +two others. But we did it. Ally only lasted about 10 minutes before she was crying of a headache and I had to take to the car. Nothing is ever easy!
I am hoping that we actually get to sleep tonight. Might try for an early night again. We are going to TRY to go to Grace Crossing tomorrow. The youth pastor had been trying to get the kids there to raise money for a ministry project. He told them if they did that he would shave his head and they could throw a pie in his face. After church last week, one of the helpers stopped me and asked if they could bring a pie to our house so Ally could throw it at him. She had been very intrigued by this whole scheme even before we found out about the leukemia. I wanted her to go to church to see this. I asked the doctor if it was okay on Friday, and he said YES! (again, her ANC is above 200) She really does want to go. So hoping for no more issues, headaches, etc until after we are done with church. It is a huge deal for all five of us to go anywhere together. HUGE.

Thank you to all of the Ally's Army followers for your comments. We continue to derive strength and valuable information from them.

9 comments:

  1. Ouch!!! What a horrendous couple of days---and you survived--tired but survived. Hope you get to go to church together. That is a big thing, I know it was for me. I also hope you get some sleep, that is the best medicine. I got my Ally's Army bracelet today and it has gotten many questions and as a result some more members for the army. We will win. Take care, my thoughts and prayers are with you always.

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  2. Janel,
    How my heart aches for all of you!
    I am keeping you all in my thoughts and prayers all day, every day.
    Hoping that you all have a good nights rest.
    Love
    M

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  3. I so hope you sleep tonight, and several nights after. It is so heartbreaking to read about a little girl in so much pain and to hear the pain in your words too. I know you are wounded, but I also know you are a fighter. So I pray for sleep, and for peace for Ally, and that you may all get out to church together. Love always!

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  4. How brave you all are to take that many kids out to eat! We cringe with only 2 sometimes...but anything for Ally! I feel so bad, I wish she looked happier in that picture. I hope tomorrow she gets to go to church and enjoys it. We plan on being there to witness it all! Hope to hear tomorrow that you got some sleep.

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  5. What a hard week for you guys. I wish we could take on some of the hard days for your family. Know that we are thinking and praying for you everyday.

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  6. Janel - I feel so badly that you are all going through this - I so wish I could save a magic wand and it would all go away.
    Here is hoping and praying that tonight is a restful one - for all of you.

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  7. Hi Janel! I cannot even imagine how hard things are right now for you. Joe would love to have Evan come over sometime and Carly also if it would give you a break! I am praying for all of you! - Mary

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  8. Janel, I had a child who refused to move his bowels because of constipation--when it gets really bad, like my child's and Ally's, it's actually it's own condition called encopresis. It's when a child, in perfect child logic, has a painful bowel movement and decides, well, I'm not doing that anymore. The constipation can get bad enough that they stretch out their rectums, and then can't even tell if they have to go or not, and of course there's the pain...but there's some good solutions. Ask your doctor about Lactulose, which is a natural sugar product, non habit forming, much gentler than Mylax, etc. You add Lactulose to juice or whatever she doesn't mind eating, she most likely won't even notice it, and it leaches extra water from her digestive system as it works through. The resulting bowel movement is very soft and very easy to relieve herself of. Then you have regular "sits" on the toilet after every meal when the bowels are naturally moving anyway. She'll have a few experiences with a really easy poop, and the problem resolves itself. My child was on Lactulose for months, though he felt better almost immediately. Ally is older so it's likely to work even faster. Love you guys.

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  9. Bless you Launa. . . . . Janel hope this works.
    Love
    M

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