Wednesday, September 2, 2009

Day of Misery

Ally is still in the hospital and will continue to be there for a while yet. Jerad took the night shift last night. She did not have a restful night. She was up a lot with belly pain that was reminiscent of our trials and tribulations during Ally's induction phase. The pain was primarily caused by constipation (the vincristin chemo she got Friday is a killer for that). Her fever remained below 100 all night, which is good...they don't even call that a fever actually.

I took the day shift today and the misery continued. She was just uncomfortable all day...belly pain, but I also think the general aches that go along with a fever. She started feeling warm to me and I asked them to take her temp. It was up again at 101.5 at about 2pm. They gave her two oral antibiotics. Then they decided the fever was too high and the nurse brought Tylenol. Ally has some strange aversion to the simplest of all drugs: Tylenol. So after one sip she threw up all over the bed and also on my pants. And she also threw up the two antibiotics that they had just given her 20 minutes prior. UGH. After she calmed her stomach, we got the meltaway tylenol into her and redid the other meds. What a pain for her. She did finally go to the bathroom a few times which helped with the belly, but she was still either sleeping or awake and crying. The nurse went to get the resident doctor to check her out. I have to say I was really getting worried. I haven't seen her this bad too many times. We have had hospital stays before and she usually starts feeling better as soon as she is admitted. But not this time. The resident doctor checked her out and then soon enough Dr Dole (one of her three oncologists) stopped in and ordered a drug called Kytril to help with her belly pain. He also wrote orders for morphine if the pain continued. He told me she was stable and okay.

About 6:30, one of the nurses brought in a big bin of hats for Ally to look through and pick some out. In our rush to leave the house yesterday, we forgot a hat for her and it gets cold with a bald head in a cold hospital. She sat up and started going through the hats and we were trying them on an she actually smiled. For the first time. These hats were made by volunteers for the Hemoc kids and some of them were sooooo cute. People make these kids stuff all the time. Every time she stays the night she gets a new handmade fun can probably see it in this picture. She also gets fleece blankets, etc. There are so many tremendous organizations out there trying to help these kids lives be a little bit easier..I LOVED this owl bandana.
Well after that, it was like a lightbulb clicked and all of the sudden she was better. Laughing and carrying on and having movie night with her brother and sister who brought their PJs to the hospital to be with her. Things were better. Who knows why. Who knows what happened. All I know is when I left her tonight with Jerad (who is taking another night shift) she was happy and I felt some relief in my heart. It really does wear on me...the worry that is. I can just feel myself clenched up with worry, but then when I hear her laugh and see her happy the clench is suddenly lifted.
MOVIE NIGHT I have no idea what is on E's head.
She was quite excited to receive cards from all her new second grade classmates and teacher. She showed them to me and they really did cheer her! Keep praying for our girl. I think it is working, hopefully she continues to get better. Either way, I don't think they will be sending her home anytime soon. I would think Friday at the earliest. They wait for her ANC number to rise back up..I think above 200, but don't quote me.

By the way, I just downloaded our list of people who are walking in the Light the Night walk for Ally on October 1. There are more people than are currently listed on the fundraising page...for instance some families have one person out on the main page, and then their spouses, kids etc are on another page that I see. Well anyway....we have a lot of walkers already. A LOT. The number as of right month to go...still people that need to sign up (I think)...the number is (drumroll)..............223! Holy cow. 223 people walking behind Ally in the army. I just can't believe it. I just can't believe this whole thing is happening to us. At least we are using our misfortune and trying to make a difference. We have also already raised $7000 and are well on our way to my goal of $10000.

If you still want to sign up, you can do so here. I really don't know any other way to get a master list and logistically get this to work. So if you are planning on walking, please sign up.

I also have about 10 of the Light the Night car magnets...they are red ribbons. If you want one, leave me a comment or send an email. First come, first served.

Thanks again to all the loyal readers of this blog. Those who offer advice. Those who send things for Ally. Those that are choosing to walk on her team. And mostly to all of you that keep her in your prayers. We are grateful and we will somehow get through this. TOGETHER.


  1. I love that you had movie night at the hospital! What a great idea. I bet that meant a lot to Evan and Carly too. They love their sister. Continued prayers...

  2. You are so right!!! There isn't a book to help moms know what to do when their child has a life threatening illness. It is a daily challenge to move through the day. I can only let you know that when I was there, I LISTENED to my child. He knew how he felt, when he hurt, when was ill. I tried to give his dignity back to him and give him some control over his own body and life. I hung onto those better days, they seemed to offer a promise that he would survive his illness. I realized through my child that living in the "NOW" offered alot of freedom. Freedom to stop living through memory of how it was and the anticipation of how it's going to be. Enjoy the moment, the "NOW" he said to me many times.
    Donna Whitmer

  3. What a roller coaster ride the last few days have been. I am sure you are worn out, but just look again and again at Ally's beautiful smile. It made me smile and Evan's hat, how awesome was that. Movie night was a great idea and it has to make you smile to see the three kids supporting each other. Hold onto the happy moments, they will get you through the tougher times. The owl bandana was the best. Lots of prayers coming your way.

  4. I love the Owl Bandana! How cute she looks! What a whirlwind for you, dear one. I hate it for you all. Praying today that Ally's temp. will stay down and that her belly will improve. I'm praying, too, that you and Jerad will also get some rest...LOVE YOU MUCHO.

  5. Wow! Well that second grade teacher was on the ball, on cool for Ally to get cards while in the hospital. I bet it made her feel good to know she wasn't forgotten. I'm praying that today she feels better and that you have a restful weekend. Love to you all! Kate

  6. Janel- as always, thinking of ALL of you. I'm glad the kids had movie night...and to see Ally got some relief. I hope last night was a bit easier. You are inspiring. Keep up the faith. AND CONGRATS on over 200 walkers! that rocks.

  7. I just seen your post from Sept 2, brought back memories of my daughter who was diagnosed with
    ALL in 2005. Hang in there, your comments seem all so real and I know how to relate to them. It brings back memories of our visits and stays in the hospital. Everything will be ok, it just takes time. You have the best doctors and nurses around to help your daughter. If you want to ever talk let me know and I would be glad to share with you. Dan Schmitz

  8. Thinking of you - as I do every day - trying to send positive vibes your way. You are all so brave and courageous - and Ally is such a special young girl - she looks so beautiful in the pictures. Thank you for sharing them. I hope that her ANC level continues to rise and that she gets to come home for the weekend. I look forward to meeting Ally on the 1st. What an amazing Army she will have walking with her and holding her the entire way!!Sheri Cobler

  9. Wow! 223 people. That's amazing! You have a lot of people who love you! Your kids were so adorable in the hospital...waiting for movie night. They get along so well, and are darling. I pray for you daily (and nightly)! Take Care!