Wednesday, March 7, 2012

Clinic Update March

Thought I would post an update on Ally and our (lengthy) clinic visit yesterday.  After doing two blood draws (the first one clotted and was unusable) I got the results of her blood counts when I arrived back home.  Everything looked good (no blasts) but some of her numbers were a little lower than usual.  Hemoglobin was down a bit 11.7, and platelets were down a lot (136).  This of course sends me into a panic.  Her platelets hadn't dropped below 215 or so for about the last 15 months.  Even while doing maintenance chemo.  Her WBC was ok and her ANC still hovering about 3500 so the nurse tells me not to worry.  Easier said than done, but I am trying to turn it all over to God and just keep marching on.  I just can't figure out a reason as to why theses numbers would go down. I wish I had gotten the results while still in clinic so I could talk to Dr B who always has the immense responsibility for calming me down.  He got quite a dose of me already yesterday (crying, which I normally try not to do!)

I guess I am just a bit down about everything.  Of course, I am upset about my friends diagnosis mentioned on here last time.  I know that everyone is different but it has proven to stir up the fear in us that we try to push away.  For instance, my thought pattern is that whatever caused this to happen to Caulin...is it going to make it come back in Ally?!!  I also know that noone can give me the answer to this.  But of course I had to talk to Dr B about it all.  His reponse (in his sweet Southern tone) "Janel, the chances of this coming back in Ally are very low"  Me:  "Really, OK.  Wait, how low?"  Dr B:  "there is a less than 20% chance it will come back....we have to get thru two more years and it goes even lower"  Me: feeling black wave come over my eyes..."20% is HIGH"...more tears....medical student in room handing me box of Kleenex"  Just another day at the office.  These doctors have to be so strong as they guide us through the unknown. 

Prior to this discussion, we talked about the fact that Ally has been off treatment for 5-6 months.  I was kind of hoping by this point that all of the medicine would be out of her system and our lives would be much like normal again.  However we are still dealing with the fact that Ally can't sleep 3-4 nights a week.  Of course, waking us everytime.  After talking to a hospital psychologist, we deemed we were doing everything right with bedtime routines, no caffeine, white noise, etc....so again we just have to accept it and hope she relearns her sleeping patterns like a baby would.  I am not sure how to do this with a 10 year old.  It is not like I have a baby in there and I can just let her cry it out. 

And then there is the larger issue of her weight gain.  So frustrating.  She continues to gain a pound or 2 a month.  Up about 20 lbs since summer.  I am telling you we limit her on everything.  We try so hard.  We know what to do.  She does TaeKwondo twice a week.  She gets on the treadmill several times a week and does some weights, situps, pushups etc.  We were told that this is not enough.  Now we have to go to no snacks between meals, no 2nd helpings, etc, no treats....and also sign her up for something more exercise related.  REALLY?  It woudn't be so bad except we already do so much for this issue and never see any results.  Then Dr B added in the fact that unfortunately she has a short mother. Hah! And she doesn't have much growing time left.  I feel bad because I feel like she has my crappy genes on this one. 

All of this being said....I KNOW that I am the lucky one.  I still have my child here with me today.  I have dealt with much worse issues and I know lots of kids that are experiencing much worse side effects than us.  It just gets so frustrating for me because I know she has been through so much and I just want her to be able to eat and sleep like a normal kid and not have to talk to her everyday about this stuff. 

Sorry this is so long and probably not too exciting to read.  I just continue on with the story....

Here is Ally!  This is about a month before she was diagnosed at Easter....she was seven.

And Here is Ally!  The other day....her friend Alex straightened her hair and I thought this is pretty much what she used to look like before diagnosis.  Her hair used to be straight as a board.  (but she still prefers it curly)

 
And thank you so much to all of Ally's Army for embracing the Booher family.  I see tons of comments on their blog from my peeps all over the United States!  Thank you for continuing to encourage them and envelop both these kids in prayers.  No words can express my gratitude!
 
One more prayer request this week.  One of our extended family members, Aunt Fay, has found out that her cancer has come back.  She is now having trouble getting the medicine that she needs to fight her particular kind of cancer.  She has been a huge part of Ally's Army...they fought the battle at the same time...we are thinking of you Aunt Fay (and Aunt Joyce!) and love you all.  Please say a prayer for her too!

6 comments:

  1. Terri Barnett ShumakerMarch 7, 2012 at 11:08 AM

    Thanks Janel for thinking of Aunt Fay, she and all of us think and pray for all of you daily. We pray for Ally, Caulin and everyone having to have this daily battle against cancer. Love to you all.

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  2. Dearest -
    "Trust in the Lord with ALL your heart, and lean not on your own understanding. In all your ways acknowledge Him, and He will make your paths straight" (Proverbs 3:5&6).

    You are a WARRIOR, a SOLDIER, in this battle called life. You are stronger than you know, and when you are weak, look to Him who is FAITHFUL. He only gives us one day at a time...which He does for a reason. It causes us to depend on Him moment by moment. You only have one piece of the puzzle. God sees the whole picture - for you, and for Ally.
    Love you!

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  3. Oh Jammer. My heart is aching. I am so sorry for all of this you and Ally are going through. I hope we can talk soon. I love you, Alli

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  4. You are always still in my prayers. Ally will get through this, and it will just be a blip on the radar in her life. Right? I think your girl is beautiful inside and out.

    Seriously, you are "short"? Goodness. Ally is already towering over me, I believe....I am not sure there is a proper adjective for my lack of height if you are "short". :)

    Laurie

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  5. Janel - praying that irregular counts are just due to the hundreds of viruses that are going around right now and the next draw things are right back to where they are supposed to be. Hang in there.

    All our love,
    The Bohmans

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  6. Janel,

    I'm catching up with email while on our plane flight from Boston.

    Thank you so much for your kind email.
    Some days, as you know, are easier than others.

    Awhile ago, I had been on Ally's website, and also had her on my prayer list.
    If memory serves me right, our friendly UPS delivery guy also knows your family and last year we talked about our battles with this disease. It is such a small world and once you have cancer in your life, you bond with others easily and really open your eyes to the suffering in the world. (I'm sure you know that too)

    I hope to log on to Ally's blog again. Right now Tim keeps me as busy as if I had triplets. His confusion from the tumor. drugs, falls and previous seizures makes it more difficult. Thank God for seeing us through, we are truly blessed.

    I pray for continued remission for Ally!

    Love
    Karen

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