Wednesday, July 14, 2010

Very Discouraged

After making somewhat of an improvement on Monday, Ally took a turn for the worse on Tuesday. No food....nothing short of a a few pringles and a few sips of milkshake. When I put her dinner in front of her, she just laid her head on the table. A few minutes later she was asleep. It is very discouraging. She has no energy. But who would have energy if they hadn't eaten much in 10 days?

I also talked to Dr B. I called into the clinic to get the results of the test and he happened to answer the phone. (Which he never does.) Well her Coombs test came back negative (We thought it would be positive) I asked him if that meant she DID NOT have the hemolysis (see yesterday's post) and he said not necessarily. He wanted me to continue to check her for either a pale color or a yellow color (jaundice), give her some medicine called Bentyl (for stomach spasms), and come back on Thursday. The virus tests were still pending.

The poor girl did make it to her golf camp...but was asleep within minutes of getting home from the 2 hour event. She is there again right now actually, but felt really cruddy this morning. She still wanted to try it.

I can't stand not knowing what is going on with her. I feel so helpless and want to take it away from her. It is one thing to know she is suffering from chemo and we just have to push through it. It is another thing to have her so sick and not know why. And watch her continue to not eat. So I did the only thing I know....I researched for hours yesterday. There are several things wrong with her blood (in addition to all the things that are always wrong with her blood) Most of which have to do with her liver. After looking at many things, I started looking at viral hepatitis. She had every symptom:

abdominal pain
profound loss of appetite
excessive sleeping

It is also a disease that causes the liver levels to rise. (AST, ALT and Bilirubin) All of hers are elevated.

It seems very possible to me. Dr Mom. I will mention to Dr B tomorrow. He knows I do my homework. Maybe it is still the hemolysis too...but that condition really doesn't cause any pain or fevers. And he as much the other day to me. I am hoping the battery of viral tests they did will have tested for this (we did not have the results back yet).

On the roller coaster of worry that we have been riding....I am back climbing to the top of the hill. My worry is high again. I wish this was going as planned. I am trying to hold onto my faith.

I read this the other day "The strongest trees are found not in the thick shelter of the forest but out in the open, where winds from every direction bear down upon them. The fierce winds bend and twist them until they become giant in stature." And that is how I feel. We have made it through so much, certainly we should be able to handle this.

With that being said, I will continue to ask for extra prayers for Ally.


  1. It must be so discouraging, frustrating, and just scary!! I can't imagine but I do pray daily for your family to continue to have faith and strength for each turn, up, down of this roller coaster of life you are on. It's great that you are researching to because it may just be something the docs overlook. You're the mom, you've got the gut instinct and that you just get from being Ally's mom! If sometimes your faith has to be tested, that's okay, that's why you have an Army to back you up and to keep praying with you, for you, and specifically!! Many prayers for the answer coming your way today!!

  2. Of course, we are praying for all of you, and for peace for your brain. The internet is a great thing for research, but it can also be scary, huh? I am glad Ally has you to advocate though. And I have faith that this mystery will be solved soon (I know, not soon enough!). Hang in there, Janel. And feel better, Ally.

  3. We are praying that Ally feels better soon! Janel you are an amazing mom! And if I have learned anything during our journey it is to trust your gut! You are her mom and you know her best! Keep fighting!
    It was good to see you the other day.


  4. Janel,
    As you know, we are our children's best advocates so great job on researching for yourself. Curious to hear what the result ends up being and if you are right. I pray for Ally everyday and will continue to ask for peace upon her.
    Hang in there,

  5. Poor Ally. Poor you. :( My prayers are with all of you. This, too, shall pass.

  6. Hang in there Janel and Ally. Ally will win this battle also, remember the good news is that there is not sign of a relapse. Also know that my thoughts and prayers are always with all of you. I just wished there was something else I could do.