Monday, November 9, 2009

Ally is Free

We did get home from the hospital around dinnertime on Sunday. Ally was not feeling great and had a really rough night. We were back to the "up every 20 minutes scheme" that we had lived over the summer. I was up at 1am to give meds. At 3am I had to fully change her fluid bag and rehook her up (something I have never done before and is even harder when done for the first time at 3am). In between that she vomited three times and went to the bathroom about every 1.5 hours. Add on an additional 10 trips to her room because her belly hurt and, well, you get the idea. I found myself getting very impatient....which I don't mean to be....but the tiredness gets the best of me. It is kind of like when the newborn baby cries and in your head you are saying "nooooooo" but you get up anyway.

We traveled back down to the hospital and they checked her methotrexate levels and VOILA she was exactly at 0.1%. Which is exactly what she has to be to be deaccessed. So that was really good. She cleared the chemo in 46 hours, which last time it took 11 days. I made the conclusion (and talked to the doc a bit) that the antibiotic that she was on for her toe infection caused the marked slowdown last time. It is the only variable that existed from the 1st, 2nd, and 4th rounds. I wish I could shout it from the rooftops (Megan this one is for you) not let them give your child keflex (spelling?) when getting high dose methotrexate if at all possible.

The bad news is that Ally was still not feeling well. Vomited again at the clinic..which really isn't that different, this stuff has made her vomit every time...but it seems to be a little more this time. And she has a cold and the phlegm is not helping matters. She has not eaten in days either. So in her stomach we have phelgm and we have medicine and it is not a good mix. She is down 5 lbs again and I try to get her to eat anything to no avail. Got a little rice in her tonight, but that has zero fat or protein which is what she needs. She is running a low grade fever too...we are just watching and waiting. They don't count it for her unless it goes above 101, but I just hope one is not brewing in there. We did that last week and would like to stay clear of the hospital for a while now.

The poor girl had to undergo a rapid strep test today too. You would think that would be no big deal for a girl with leukemia, but she threw a crying/screaming fit right in the middle of the clinic for about a half hour. She just keep freaking out about it, huge tears. The nurses had never seen her act like this. I kept telling her it was no big deal compared to the things she has done, but I couldn't reason with her. Finally, by some grace of god, her Dad and her Grandpa walked in the room. They had been at Children's for a work meeting. And they got her settled enough to do the test. And guess what???? NEGATIVE. Which is good, but I felt bad she had to endure yet another thing.

She is not due back for chemo until 11/20. She starts a new round. I really really really am hoping she can stay well until then and we could have 11 days without the hospital. She will have to go twice for a blood test, and hoping she doesn't need blood, but it is probable. (she has every time)

When I packed the car and rolled out of the hospital yesterday, it was a good feeling knowing that we are done with the "planned" hospital stays. I just want to keep the other ones to a minimum.

I am hoping we all get some rest tonight and her belly pain subsides.


  1. Keeping this blog is great for so many reasons, but hopefully your experience with the Cephlex (sp?) and the chem will reach someone and help them out. Here's to several days home without hospital stays. Thinking about you . . .


  2. Triumphant- congratulations being finished with the methotexate. I'm thankful for that. Sounds like the strep test was the straw that broke the camel's back, or rather made the camel trip a bit. And while the weight is down and the side effects are in full force, I hope you can all find comfort in the rate at which her body processed the drugs this time. Hoping you slept more last night, and the recovery will progress quickly....

  3. Janel...

    Just been feeling very positive about you guys lately...just calm and sure about your journey...I hope Ally begins to feel better after this last round much faster than last time...thinking of you and sending love and prayers over the roof tops and across the way...hugs...Jill

  4. Janel, I just read this about 5mins.ago and then I decided to get on here. "Even the strongest people must step back, take a deep breath,and summon their courage now and then." I hope you have a better night. I will say a prayer before bed tonight that God gives you strength and sleep.... Cathy and Amanda

  5. What a wonderful accomplishment-last round done and out! Now hope she feels better, and don't worry, we all know what you mean about the patience in the night, ask Matt about it sometime :)
    Anyway, this is a long shot, because when you'll have time to bake I don't know, but my kids gobble these up for breakfast and they're FULL of protein, calories, and fiber. A recipe I've created, for chocolate chip muffins,hope you like:
    2.5c whole wheat flour
    2.5c old fashion oats
    1c sugar
    2.5t soda
    1t salt
    1/2c natural peanut butter
    1/3c oil or melted butter
    2 eggs
    2c whole milk
    1c ghiradelli choc. chips or other 60%dark choc.
    Mix dry ingredients, in separate bowl mix PB, oil, eggs, milk, then add dry to wet. Mix well. Add chips. Put in buttered muffin cups (they stick to paper)
    Bake at 400 for 16 minutes for regular sized muffs filled.
    Sorry for the long note, but thought they might help if she'll eat them.

  6. HI Janel, Just read that you all were home last night (Sunday). Great news! I hope your wish comes true that you can stay home all week and especially be home for the holidays with all of your family. We think of Ally often and can't imagine how hard it is for you and Jerad. Your strength and perseverence is so admirable! Take care.
    Suzie Kreusch