7.28.2011

Transfusions, Shunts and a Chance Meeting

We started with PT today.  She was so excited to be there.   She just loves PT and OT.


Lucy's ANC remains at 0.  She is receiving platelets as I type and just got her day +6 dose of Vincrystin.  My mom is reading to her and she is very content. ( I wish you could hear her reading Skippyjon Jones and the Big Bones. I can hardly keep my focus for laughing so hard.)


I am thankful, once again, for the spirit and contentment that God has graced Lucy with.  Today while we were sitting in B clinic waiting on her physical exam (needed before she got her dose of Vincrystin today), her shunt inverted again.  It happened in the blink of an eye.  Several doctors came to observe and we finally got to see Dr. Wright again.  Since she is our primary doctor, I was so relieved that she was able to lay her eyes on the situation.  No one seems overly concerned since she does not present any symptoms when this happens.  We will see Dr. Boop next week for a second opinion.

Did I mention that I love Dr. Wright?  She is an amazing woman and I feel so blessed that she is Lucy's doctor.  I hope she never, ever leaves St. Jude.  At least not until Lucy is 18 and no longer a St. Jude patient.  When I mentioned our MRI was scheduled for the 10th of August, she said "Yeah, and I'm on vacation."  You would have thought someone pricked me with a pin as I was instantly deflated.  She quickly said "I'm kidding" and I just started crying.  My mom was laughing so hard and I was just embarrased to death.  I know that Dr. Wright will be watching after the MRI and will call us as soon as the results are in.  For me, there is such a level of comfort knowing she is here.  Did I mention that I love that woman?

Lucy will probably need a blood transfusion tomorrow as she was .4 away from the critical mark.  I tried my best to get them to do it today so that we don't have to spend 2 days in a row in the medicine room, but I wasn't too convincing.  Oh, well.  It's almost better than sitting at the Target House.  Those walls seem to close in a little more each day. 

So, yesterday was a special day at the Target House (for us at least).  The craft room, which I have lovingly mentioned several times before, was generously donated by Olympic skater Scott Hamilton and his wife Tracie.  We had the opportunity to meet Tracie yesterday and spend roughly an hour talking with her as the kids around us painted birdhouses andgarden stones.  She shared her faith and the trials her husband has gone through fighting his own cancer.  Erik actually talked with her more than I did, as I was running around washing paint brushes and fetching paints.

(Gracen)

(My neice Annaleis)


(Abigail, Cheri, Lucy and Leis)

Tracie just amazed us with her genuine faith in God, her love for St. Jude and her desire to learn about us and the other children in the room.  We thanked her serveral times and tried to convey to her how much the craft room has meant to our family.  For some children it might not even register.  For my children it is a distraction from reality; a great outlet for frustration and creativity.  She acknowledged that their monetary gift was just a manifestion of a greater gift from God above.  I hope to meet Tracie again one day.  What a genuinely beautiful person, inside and out. 

Well, I just put Buzz to bed and she seems to think everything is going to be A-OK tonight.  I do too.


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7 comments:

  1. Love love love the Buzz picture! Sweet dreams to btw of you!

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  2. I am so encouraged to see that beautiful smile on Lucy's face (the Buzz outfit is perfect! The funny thing is, we have that exact costume, and my daughter Ellie--who is usually wearing a tutu--insisted on wearing that for two whole days--it just made me smile to see Lucy wearing it too!) We continue to pray for Lucy's healing, strength, and that God sustains her fighting spirit. May God give you all a strong sense of His presence in the days ahead. May He bless you and strengthen you and your husband in all you are going through each day.
    Sandra

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  3. Wow I love that some people just have hearts of gold.... willing to give a gift that might seem insignificant, but truly helps others. Praying for Lucy's ANC to come back up and for her to continue to gain health and strength.

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  4. Praying for Lucy. Just thought I would tell you that I never send money to those folks that send the return address stickers in the mail. Yesterday I felt so wonderful putting a check in the mail to St. Jude for my envelope stickers that they sent. Go Lucy Go was written across the top of the insert with my check. Made me feel so good to do that one!

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  5. What a brave sweet little girl!!! Thank God for St. Jude and the doctors there. Continually praying for you all.

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  6. Happy post! LOVE that last pic of Lucy! :)

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