Monday, October 31, 2011

Fall Fun

We had a crazy busy weekend, but it was great.  Friday night I went to Memphis with 2 friends for a nice evening of girl time and a great dinner!  It was so hard to leave the house, but it was so great to have some time for myself.  Saturday morning came early with Ella playing in a double-header soccer game.  Saturday evening we all (minus Jack) went to a Halloween party at one of Ella's classmates house.  It was a blast and we all got in the costume spirit!



(Me and my friend Amber)

Sunday night Erik and I surprised Ella with tickets to go see Taylor Swift in concert.  She was so excited and felt like such a "big" girl.  We went with Amanda, Gracen, Leigh and Maddie.  The three girls were so sweet and acted so grown up.  We went to dinner at The Majestic Grille and then walked down Beale Street on our way to the Forum. 






 (We ran into Ella James at the concert and Ella was pumped!)




I don't have a lot of pictures of Lucy from this weekend.  Mainly because she spent a lot of time on the couch.  She was really fatigued and quite honestly didn't have the desire to do much of anything.  When we went to St. Jude on Sunday we found out that her ANC and platelets had plummeted since Thursday.  She got a platelet transfusion and today we found out that her hemoglobin was 3/10th of a point away from critical.  No wonder she feels so crappy. 

The physical therapist told me today that after observing Lucy for the first time in almost 2 weeks, that she has developed pretty significant foot drop in both feet.  I am pretty upset about it, but I know that with hard work and time she will overcome yet another obstacle.  If she has not improved any in about a week or so she will likely be fitted for foot braces.  She will hate wearing them, but they will be necessary to keep her safe and keep her from falling.  The foot drop will only make her balance issues worse.  

I had a rough day Sunday.  Erik and Ella took Lucy to the hospital in the morning and Jack and I were alone at home.  When he took his nap, I cried.  A lot.  Being alone in my house with my thoughts was not something I was really prepared for.  I have always been a worrier and have allowed myself to sometimes go "where I shouldn't" with crazy thoughts about harm coming to my children.  I guess most mothers have those fears.  But for me, those worst case scenarios are no longer just fleeting thoughts.  They are my new reality.  They could actually happen.  At one point in my crying I literally cried out to God, "please don't take my children from me."  I know it was a selfish prayer, but it was all I could muster.  God knew what was in my heart anyway.  There was no reason not to speak it. 

I guess I will struggle with fear of the unknown and fear of the future for the rest of my life.  I hate that part about my future, but I will gladly take the anxiety, fear and uncertainty for one more day with each of my beautiful children. 

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Wednesday, October 26, 2011

Fall Fest

Not a lot of words, just some pictures of some really adorable kiddos at our church's Fall Festival.  If you are local and are looking for a great church, I'd like to invite you to attend mine.  First Baptist Covington.  We've got a lot of great things happening and a wonderful children's program!











 (Ella and 3 of her best friends)


(Lucy and sweet Maddie)

Tonight I am so very grateful for life, for my children and for the healing that is happening in Lucy's body.  God is good.

 
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Tuesday, October 25, 2011

Shirt Deadline

This just in.....

If you want a shirt for the St. Jude Marathon Weekend-Team Lucy, the deadline is tonight!  That's right, TONIGHT!!!!  Contact Kristie @ jklyons99@bellsouth.net

Meeting with our new PT tomorrow.  Lucy is stoked!  She did her 9 week assessment today with Mrs. Beverly and I am super excited to tell you that she is right on track!  She was not behind in any area.  That's my girl!  We had today off and tomorrow, too.  We go back to St. Jude on Thursday for what will, hopefully, be our last B Clinic visit.  We should be transferred back to E Clinic then.  After that, we are just in a holding pattern until her platelets stabilize at or above 50 and she proves she can sustain herself calorie-wise.  I am so ready to see that central line gone, but I don't want to rush into anything that might jeopardize her health. 

It's 7:30 and I am literally exhausted.  I don't know if I am even writing coherently.  I am going to bed.

Gratuitous Picture:


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Sunday, October 23, 2011

St. Jude Marathon--Team Lucy

Ok, Team Lucy.....I just got a report that we have the largest team signed up for the marathon/half/5k.  But only 20 people have ordered a t-shirt.  WHAT?????  Come on guys, we need to not only run (or walk) well, but also look great.  The deadline is quickly drawing near, so please contact Kristi Lyons if you want a shirt. 

jklyons99@bellsouth.net


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Busy Weekend

I have to say that every 24 hours since the beginning of last week has been almost miraculous when it comes to Lucy's recovery.  Every day she grows stronger.  Every day she becomes more mobile.  And eating....well, at least asking for food.  Lots of it!  She takes bites here and there, but we consider her even asking for food a huge success!  She knows what she has to do to lose the TPN and she is giving it her all. 

Ella had a soccer game Saturday morning that I did not get to attend.  It was Erik's turn to watch so I stayed home with Jack and Lucy.  After the game Ella went to play with her friend "EJ" and had a blast! 


Lucy went to the hospital and had to get Platelets (she was at 14!!!).  That tied up Erik and Lu for most of the day, so Jack and I were home alone.  While he napped I unpacked Target House stuff and tried to begin making sense of the home that I've been away from for almost 8 months.  I wish words could explain the emotions I am feeling about being home.  I honestly feel like a stranger in my house.  Yesterday I just sat on the couch and looked around.  It was as if I didn't belong here.  I was looking in on someone else's life. 

My life has not been here since February.  Mine has been in the hospital, at Target House, on the road.  Don't get me wrong.  I am glad to be home, but its just not the same.  Yet.  I'm working to make this house my home again.  All the people who make up my home are in it, but my head has just not reconciled with my heart yet.

And the exhaustion.  Oh, the exhaustion.  I think that by being home I have allowed myself to let my guard down a bit.  In doing so, this crazy feeling of sheer fatigue has rushed over my body like a hurricane.  When my head hits the pillow I am sleeping so hard and I usually can't stay awake past 8:30.  8 months of running on adrenaline has wrecked havoc on my system.  I haven't run since I've been home and I miss it so much.  I was doing so well and was quite proud of myself.  Oh, well.  There will be a time for that eventually.  To be honest, its been hard to tear myself away from the kids at all since I've been home. 

After Lucy and Erik returned from the hospital, they met up with Ella, Jack and me at my parents house.  We had a Sunday School social there and had a blast.  We ate hot dogs and chili, the kids played in the yard, we had a bonfire with smores and then went on a hay ride.  The best part was that all 3 of my kiddos were there and had a great time.  Especially Lucy.  I think she had the most fun.  She felt so normal being with her friends.  I would be remiss if I did not add that she wore this costume ALL day yesterday.  Even to the hospital.  This is her Halloween costume. 

(picture quality is horrible)

As I think about the road ahead of us I easily become engulfed in fear and fatigue.  We have only begun the journey to recovery.  Sweet Lucy has such a long, long way to go.  PT, OT, school, eating, gaining weight, staying cancer free.  We still need to see so many miracles in her life.  I know that God is not done with her yet.  He has some mighty big things in store for her and our family.  I have to be patient and let God work His miracles in His timing.  The saying below reminds me that when I have grown too tired and too weary, all I have to do is hand it over to my Heavenly Father.  That's where it's supposed to be anyway.  Not in my arms, but His. 



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Thursday, October 20, 2011

We Have Lift Off!!

Just as the dietitians said she would, Lucy asked for food last night.  We watched with wide eyes in disbelief as she had 3 bites of a chicken leg and 2 drinks of chocolate milk.  We sang her praises and made a HUGE deal about it all.  This morning when we got to the hospital she picked out chocolate milk from Starbucks and had at least 10 sips, followed by 2 bites of turkey at lunch.  Tonight she tore apart a half of a chicken leg.  It is miraculous to say the least.  We are amazed, bewildered and so very thankful.  Please keep the prayers coming, because they are working!

Today I turned in my key to Target House.  I packed up the last bit of stuff to bring home, donated food from the freezer and pantry to some appreciative families and prayed up and down the halls as I walked back and forth between the car and elevator.  I prayed specifically that we would never walk these halls again as a patient, but rather as servants ministering to the needs of unfortunate families.  I also said a special prayer over room 300.  I prayed that God would bless the next family who stayed in that room, that He would bestow mercy and healing on their child and that the family would be able to feel the presence of prayer when they slept at night. 

**Kristie, thanks for taking care of Lucy and letting her play with Justin while I packed.  She had a wonderful time with her friend.**

 I am so grateful for the friends we have made during our stay and ever so grateful to Target Corporation, St. Jude and the countless individuals that make that place run.  The volunteer organizations alone would take a page to list.

****If your church or service group is looking for a place to plug-in, I would recommend Target House or Ronald McDonald House.  The families staying in these houses look forward to the meals brought in and the entertainment provided to their children. **

I have a ton of pictures I took throughout our stay at the TH that I will post soon.  I need time to organize them all. 

 The field trip yesterday was a success.  While we nearly froze to death while we were there, we still managed to have a good time and take some great pictures!



Even the "adults" managed to have a little fun!



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Tuesday, October 18, 2011

Busy Day Today

Today was a crazy busy day. We arrived at St. Jude at 9:30 and went straight upstairs to be a part of the Christmas video/commercial for St. Jude.  We were honored to be a part of it and Lucy tried so hard.  She gave it her all, but it was exhausting.  My mom got to watch the filming from "behind the scenes" and she just cried and cried.  She said it was very hard seeing Lucy struggle so much.  All she was trying to do was keep her head up and play some hand bells.  But just the simple task of keeping her head straight and sitting up hurts her so badly.  Oh, she has such a long way to go. 

After a short day of filming, speech consult and medicine room visit, we headed to the Target House to start packing up.  We worked for about 3 hours and got almost everything packed and brought home.  One more trip and we will be done! 

(This is Kristen, one of our favorite Medicine Room nurses.  She has ministered to me in so many ways during our journey, including one particular Diet Coke day.) 

Here are some pictures of our previous visit to the Audiologist.  Lucy's hearing had changed ever so slightly.  Nothing that we would be concerned about yet and probably will not equate to anything in the future.  Just something to monitor as we go forward. 

Ms. Stephanie measuring the movement in her ear drums.

 

Listening for the beeps and throwing the animals.  If you notice how her head is thrown forward, that is how she stays a lot of the time.  Her neck is a source of constant pain and we will be working hard to rebuild those muscles. 



Lucy and Ms. Stephanie


Nanny, Lucy and Me at yesterday's B Clinic visit.  No, she did not wear this hospital gown to the clinic visit, but it was our only option after she got sick.


After a VERY long day, we finally made it home.  (Did I mention that I was sick as a dog yesterday??  Lesson learned, I can NOT take prescription pain pills.  EVER.  I vomited all afternoon and the hour drive home from the hospital was the only glimpse of hell I need to keep my life straight forever!)  Anyway, after a quick stop at Target for some rain boots, we got home.  We had a wonderful dinner tonight, all of us at home together, and then Ella and I made pumpkin pie.  I hope the girls grow to love cooking as much as I do.  She read the ingredient list and instructions and I pretty much let her do it all alone. 



Oh, the rain boots?  The are for the field trip I get to go on with Ella tomorrow.  Nanny is taking Lucy to the hospital and I am going to spend some much needed time with my oldest angel.  It rained all day today and the trip is to an outdoor pumpkin farm.  It was 85 degrees yesterday and 50 today.  Its' going to be cold again tomorrow( and very muddy).  Should be fun?!?!

Lastly, Erik and I met with Lucy's doctor yesterday about the scans.  All in all, we are all pleased with the results and were once again reminded of how far she's come.  We won't be sharing a lot of details, as some things we need to keep to ourselves, but Dr. W said she was "happy."  And that's about the best we could expect.  We know that the radiation and chemotherapy still have work to do and more importantly we know that God is not done yet.  He is the ultimate healer and physician.  He is who we are placing all our hopes in. 

Phil 1:6
And I am certain that God, who began the good work within you, will continue his work until it is finally finished on the day when Christ Jesus returns.



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Sunday, October 16, 2011

Not a Great Start

Welcome Home Lucy!

(Sign meticulously made with tons of love by Ella)

Lucy has been so sick since we've been home.  It's been very difficult to adjust to being home with her being down.  Her body hurts, she vomits non stop, and she sleeps a lot.  We have hope that this will all resolve soon, but right now we are just trying to keep her comfortable.  (Which is hard because all of her pain meds are taken by mouth and she can't keep anything down.)  Chemo is a nasty thing. 

We did have a few good hours on Saturday and she actually wanted to be outside for a few minutes.  It was beautiful outside so we took advantage of the afternoon front yard shade and played.  The girls painted nails and Jack was well, Jack.  Into EVERYTHING!!!








We are back at St. Jude everyday this week.  Erik and I look at scans tomorrow so I will report more after I see them.  My hope is that by the end of next week we are home for good.  I'm anxious to get Lucy started with her at-home teacher and PT/OT.  All of this depends, of course, on her ability/willingness to eat.  Pray for an appetite please.  I'm so ready for this nightmare to be over.

Had to include this...we are slowly but surely getting ready for Halloween.


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