Saturday, June 25, 2011

Chemo--Round One, Day Plus One

(the view from my new bedroom)

This means that today is our first day after Chemo/Stem Cell Transplant.  The countdown to day 28 begins now.  We wait, we watch, we PRAY our little hearts out for many things.  Most importantly we pray that the Chemo is doing its job.  All those little rogue cells that have infiltrated Lucy's body must die!!  If only one cell survives, Lucy's cancer could come back/begin to spread.  As I have mentioned before, Lu is receiving the highest dose of Chemo allowable for her age/size.  Her body is being literally torn apart by this horrible medicine.  But thankfully she was able to receive an Autologus transplant, so her body is not likely to reject the stem cells she received yesterday. 

Next, we pray for no fevers.  Any fever she gets while her counts are low and/or dropping will land her a 7-10 day hospital stay.  She hates being in the hospital room and bed.  And when you are a patient on the BMT floor you can't leave the floor.  No cafeteria runs, no excursions to the gift shop.  It's rather like semi-solitary confinement. 

Lucy is experiencing a lot of discomfort after her first round of treatment.  Nothing severe, but enough to make sleeping and resting difficult.  Some weird leg pains (probably joint pain) and a super dry mouth.  It's even hard for her to swallow her saliva.  Did I mention that she still smells like creamed corn?  Seriously, though, please pray that her leg pains will subside.  Erik was "on call" last night and I don't think he got a wink of sleep.  We left the hospital with an arsenal of meds, but I hate giving them to her because they all make her very drowsy. 


(I expect this will be par for the course over the next few weeks)

Today is going to be a big day.  Ella and Jack are coming down to the apartment and we are going to spend some much-needed family time together.  Only 4 people can stay in the Target House at a time, so Ella is hopefully going to my sister's tonight and then come back over in the morning.  As long as Lucy is doing well, I am going to try to have Jack with me as much as possible.  He is just at such a formative age.  He needs me and I need him.  Ella's schedule is packed tight with swim team, horse camp, gymnastics camp and swimming and playing with her friends.  She will be down here as much as possible, but I know she needs to maintain her life at home, too.

It's a balancing act.  A very hard balancing act.  Erik and I have discussed more than once how being close to home is a blessing and a curse all in one.  First, let me say this.  Any St. Jude (or other) mother (or father) that is reading this and has had to relocate from his/her family is probably screaming with disagreement right now.  I understand that and I would never, ever want to seem unsympathetic to what they are going through.  But for us, living close to the hospital has posed several different (not necessarily harder) challenges. 

For our friends the Foleys, the Watkins, the Goods (and many more) they made a decision that leaving their homes and coming to Memphis was the best option for saving their child's life.  They packed up their cars with all the comforts of home that would fit and moved to a "foreign" place for 6-12 months.  Some leave home for even longer.  (I met a family from Lebanon that has been here for so long that their children have learned fluent English and they have bought a house Downtown.  They have no idea when they will get to go home.)  Those families only see their loved ones a few times a month or less.  My heart hurts for them in such a mighty way.  But they know that when they leave and they accept it (to some degree I guess).  Their focus becomes totally fixed on the sick child.  Just the way it should be.

For us it is different.  With my children at home and us being home during the first 12 weeks of treatment, it is hard not to fall into the role of mommy/daddy.  If I can make sure that Lucy is in the most capable hands of her grandparents and make it to a swim meet then I am going to try.  If I can provide Lucy with the best care while still trying to nurture and love Jack during his formative months, then I am going to try my best.  Some days I have actually thought to myself how much "easier" it would be with Lucy as my only concern.  But then my heart aches at the very thought of being away from my children.  My arms literally hurt as I think about holding my precious children if even for 2 hours a day.  I know moms that right at this very moment would hop on an airplane and fly for 12 hours if only to hold their babies for a minute.

My Jesus Calling devotional this morning reminded me that God desires our Thanksgiving.  He yearns to hear our songs of praises.  My favorite line from today reads "By the time you rise from your bed, I have already prepared the way before you.  I eagerly await your first conscious thought." 

So today I will sing praises of Thanksgiving, no matter what may come our way. 

Dear Lord I am so eternally grateful for:

Erik, Lucy, Ella, Jack, St. Jude, Target House, a warm bed away from home, proximity to home, the promise of eternal life, Heaven, our extended families, the opportunity to have my children with me today, friends from home, friends we've met along the way, doctors, chemo, radiation, the promise of a future for Lucy, freedom, the Bible, our armed servicemen/women, medicine, this beautiful earth and so much more. 

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7 comments:

  1. All the time thank God! and you do so well. Take care. Lori PS more people on Lucy's prayer train from my post. Yay!

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  2. May the Lord God heap Sabbath rest on you today! May His peace and calm invade your souls. May His Strength surround you and His mercy drench you with His Goodness.

    You are right on, girl. Can you believe your pastor will be preaching tomorrow "Don't Run With the Crowd: Be Grateful"? When God moves His people in the same direction from different locations, it always bring such JOY to my heart!

    We ALL love you and constantly lift you and yours up to the Throne of Grace!

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  3. Simply in the background PRAYING!!!!!!!!!!!!Daily for your family!!!!!!!!!!!!!!!!!! Knowing God can comfort you, give you strength, and is the ONLY ONE who can give you hugs BIGGER than anyone else.

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  4. I will pray that the chemo works, Lucy doesn't get a fever, you & your family have extra strength to keep fighting along with Lucy to beat this illness, the leg pain subsides, and for Lucy to feel better! I couldn't imagine how Lucy feels when she is cooped up in a hospital room and can't go anywhere! I know when I was in the hospital I was only in my room to eat, see doctors, and sleep! I would go crazy if I was stuck there! It breaks my heart to see Lucy not feeling good! I'm praying and will continue to pray! I also have all my friends and church praying for y'all, too! I love you!

    GO LUCY GO!!!

    Love,
    Allison
    Here is a verse that has been an encouragement to me...
    II Corinthians 4:15
    For all things are for your sakes, that the abundant grace might through the thanksgiving of many rebound to the glory of God.

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  5. Bethany in ArizonaJune 25, 2011 at 5:07 PM

    Kate,
    I've been reading your blog for about a week and I just wanted to let you know that I'm storming the gates of heaven with prayers for Lucy, for you, and for your entire family. My heart aches with you, and hopes with you. May the Lord cover you this day and every day.

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  6. I will be praying that the chemoe works and praying that Lucy dosen't get a fever. She is such an inspirational little girl and I hope she goes on to live a happy and full life.
    Best of luck!
    Charlotte

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  7. I want you to know that you inspire me every day. Your love for God is amazing, and I often think of you throughout my day, and how you would handle situations.

    I pray for your little girl each time I read your blog posts. She amazes me as well.

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