Wednesday, March 23, 2011

A Day of Ups and Downs

Today was a day of emotional ups and downs.  We were no where near the dark depths we have been before, but definitely felt overwhelmed and frustrated to a point of discontent and lots of tears.  It is so hard watching Lucy struggle to get well.  I keep saying over and over, “she hasn’t even started fighting the cancer.”  Well, all that changes tomorrow as Lucy will (baring any unforeseen problems) start radiation.  Her first treatment is scheduled for 12:45.  She will be sedated, but only with enough Propofol to help her rest easily.  Each radiation therapy (RT) only lasts roughly 20 minutes.  She then goes to recovery to wake up and we go about our business.

Lucy continued to run a fever today off and on, but it seems to be well maintained with Tylenol.  When you have cancer, the general rule is to never give a child Tylenol when they are hurting or running a fever.  It can mask infection and that can lead to a big, ugly mess.  But since we have already established that she does indeed have an infection somewhere we have a little more flexibility in controlling the fever.  They are watching a few cultures (blood, urine analysis and CSF through a shunt tap today) to see if anything turns up.  Nothing specific has reared its ugly head yet, so we are PRAYING she just has/had a virus.  Please, please pray that with us.  We can not go home until they either know exactly what is going on or her fever dissipates on its own for more than 24 hours. We desperately want to get her back home. 

We have been trying to get a PT consult worked into the schedule for some time now.  Well, today it finally happened. 

pt

I was so glad, as this has been weighing heavily on my heart.  She needs to be walking again and right now she just can’t do it without a lot of help.  I was pleased thrilled ecstatic after the Physical Therapist said that everything looked to be working properly, we just need to build up Lucy’s core strength and leg muscles.  We will also be working on balance issues over the coming weeks/months.  It will be a long process, but I know she has the determination to put in the hard work it will take.  So tomorrow we are going to try to see if she will walk with a walker.  I just hope her pride does not get in the way. 

We have a busy day tomorrow and I am exhausted.  Lucy, on the other hand, slept more than 1/2 the day and is wired.  Right now she is playing Wii with her Daddy. 

wii I keep asking her if she is tired yet and its a no-go.  I am just hoping that once she actually goes to bed tonight we will all get a restful night’s sleep.  I wish more than anything I was in my bed, Ella and Lucy sleeping together and Jack curled up in his crib.  Hopefully soon…..

Tomorrow’s schedule:

8:00 Abdomen X-ray

8:30 Abdomen Ultrasound

9:30 OT Consult

10:00 PT Consult

10:30 Audiology Consult

11:00 Photography Visit

11:30 School- New Patient Consult

12:45 Radiation

2:15 Neurosurgery clinic visit

A day in the life of a new St. Jude patient.

To finish up, I wanted to share a couple of positive things that came our way today:

1.  Dr. B read our last MRI and it appears that the tumors in Lucy’s back have not grown or spread.  We are very excited about this news, as we all just assumed they probably would have since we have been so delayed in getting started with her treatment.  God is showing himself in a HUGE way here. 

2. It also appears that her spinal cord is rebounding well from where it had pressure on it from the tumor.  This would explain why Lucy is making progress with her walking.

3.  PT believes Lucy will get all her walking functions back with some hard work and lots of time.

This being said……please don’t stop praying for Lucy.  Erik and I live every moment with the dread of what Lucy is about to go through.  Radiation brings some unwanted side effects that we are praying will be kept to a minimal level.  Actually, we are praying that God would perform a miracle and she will not have any side effects at all. And then once that is all done, we have to watch our baby suffer through 4 months of Chemotherapy.  So again, our family covets your prayers and we need them now more than ever.  Thank you so much for allowing Lucy to be a part of your lives.

62 comments:

  1. Praying, praying, praying specifically for all you mentioned above, for rest, and NO side effects. Praying everyday!

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  2. Sitting up waiting on your post! ;) I know...its just that I want to know exactly what to pray for before bed. I rejoiced tonight at church after the news that Lucy's tumors have not grown or spread (Amanda). Our precious friends, we are fighting with you. Please know that. Lucy is going to be running around happy and healthy before you know it. I just know it! We love you all and MISS YOU!
    ♥ AMY

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  3. Wow what a day today and tomorrow! I didn't realize Lucy couldn't walk. :( I will focus in on prayer here too.
    Hang in there! I see you do have some good news and that is awesome! Praise God, the tumor in her back hasn't spread and she IS starting to move around more!!!

    Praying and prayin,
    <><

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  4. Kate we are praying! We wont stop until Lucy is well. And then we will thank HIM for all HE hasa done! hugs to you sister and continuing to lift you and yours up!

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  5. Still praying in Alabama for that adorable girl. Praying for and expecting a miracle!

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  6. glad to hear things are moving forward. Prayers are being answered one by one. Please let me know if there is anything I can do on a PT note...even if you have any questions about anything. We love you and are here if you need ANYTHING

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  7. Praying Praying Praying! I think of sweet Lucy many times during the day. I know we serve a miracle working God! We are believing for Lucy's Miracle!

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  8. Awesome news from the PT! :)

    Saw lots of Lucy ribbons on mailboxes on my drive today! Love those little reminders to pray for your sweet girl!

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  9. We are praying for Lucy in Seattle. Good luck tomorrow.

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  10. Im LOVING all this positive news!! How wonderful!! If we all focus on that and give the rest to God He will surely bless the situation! Im so excited about Lucy!!! She is so darn cute =) I think of yall and pray for your family daily. I love how you keep us all up to date on things..we all KNOW your life is soo nuts right now and we appreciate the time and dedication you have spent on this to help us all know how Miss Lucy is doing =)
    Praying that yall are resting well!!
    Have a GREAT day tomorrow..lots of tasks but getting lots of info on how to kick cancers butt too!!
    God Bless!!
    Stacey

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  11. I'm beginning my day at work but first I send my prayers and many wishes for strength for you all!
    I hope Lucy's fever comes down and they find out it was nothing more ugly than a virus. I also hope you get some more positive news along this tough path you are going and get to go home soon.
    I admire your faith and assure you that there's no way anyone could stop praying for Lucy, and you all.
    Even though you will have a busy day, I hope it will be a good day, too.

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  12. Thank you for allowing Lucy to be a part of our lives. Prayers are continuing your direction multiple times a day, each and every day. Much love and prayers from Idaho.

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  13. All I can say today is I can't even imagine... God bless Lucy today and always. You probably can't even imagine each day you wake up, God bless your whole family.

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  14. I'm mailing Lucy a package today and it sounds like you all could use a pick-me-up...Wish I could do more, but know that you are constantly in my thoughts and that you are prayed for here in Cookeville!
    (((HUGS))), Michelle

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  15. Saying lots of prayers for you guys today.

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  16. I am so thankful that there was no change in the cancer in her spine! Another blessing from above! I pray that the chemo and radiation touch the CANCER ONLY. I pray that it go straight to the source and nothing else. I also pray there will be no side effects. God is capable of making that happen.

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  17. Praying right now.
    Lord, Please be with sweet Lucy today. Bring her fever down and give her and her family the strength to get through today. Lord, thank you so much for showing yourself through her MRI. We know you are the great physician and we are putting all our trust in you.
    In your name. Amen.

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  18. Certainly keeping the prayers coming your way! I believe that God's going to continue to show Himself through this unimaginable situation.

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  19. We are praying for you all!!! What a busy day! I pray that everything goes well and that Lucy has minimal effects from todays treatment. You all are constantly in our thoughts and we wish you the best of luck today. Love, Liz

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  20. Kate - never fear, prayers for Lucy and your whole family are not going away. She has wormed her way into lots of hearts, with more every day. Take good care of yourselves and we'll take care of the prayers.

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  21. Praising God for your miracles today and praying for Lucy complete healing and comfort. I think about you so many times throughout the day and pray for you equally as much.

    GO LUCY GO!!

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  22. Still praying so hard in Millbrook, AL!

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  23. AMEN AMEN AND AMEN..... I pray for energy for each of you today... I know that this is what it will take to get through these next few days until you settle into the St. Jude way of things. But I also know that when you do it will be easier on each of you. I pray that the tumor goes away, and that your sweet girl is up and moving on her own two feet in no time, but until then i pray that she uses what is there to help her get to that point with out hesitation knowing that its just the next step to getting better. I also pray that those who are caring for you at St. Jude are God fearing people and are loving on you as much as your family needs it.(and from what i personally know they are...) kate keep your chin up and remember we serve an amazing God and He is able even when we are worn...

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  24. Lucy (and all of you) continue to be in our prayers every day. I'm so happy to hear the good reports from the PT and the MRI. Praying that this fever goes away without any complications and that Lucy will be able to go through the treatments without any of the side effects!

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  25. Dear Kate and family,
    My thoughts and prayers are with you!
    With love from Winnipeg, Manitoba, Canada,
    Stacey Bradley

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  26. My heart breaks for your family. I admire your strength, your wisdom, and your faith in God!!! I know He will take care of your Lucy. Sending prayers your way!!!

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  27. Kate, I am still praying for all of you. Even with all the negative going on in your life, it is good to see positives, too. I pray not only for the specific prayers you have requested, but also that each day gets easier for you and Erik as well as little Lucy. She has been an inspiration for many people. She is strong and with His help she will be healed.

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  28. much love and continual fervent prayers for sweet Lucy and all of you!!

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  29. All prayers coming your all's way!! Praying that Lucy will stay well in order to start the radiation. Praying that you and Erik will stay strong! Praying that the radiation treatment goes according to plan. Praying that there are no, or minimal, side effects. So glad to read about the reports on the tumors!!!

    Whitney Cox

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  30. Sending prayers from Minnesota! Thinking of your family and hoping that today will be a good day.

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  31. Thank you for sharing her with us and letting us know what to specifically pray for. You are in my mind all the time and I breathe a prayer every time I look down at my green Lucy bracelet! God is with you even if you can't feel Him. He is holding you up when you think you can't stand. God Bless each of you.
    Joan Hanks

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  32. Dear Kate, Lucy, Erik, & family...
    I have just read your whole blog after seeing it linked on another blog I read. My heart is heavy for you and I have said numerous prayers for that beautiful little girl! I actually recognized a 2nd or 3rd cousin of mine in some of the pictures, Amber Smith. Prayers are coming your way from West Plains, Missouri. Stay strong and have faith!!!!
    Mallory Thompson

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  33. Continuing to pray for Lucy and your family!! I anxiously check your blog often waiting for an update on little Lucy! I find myself praying for her countless times a day and will continue to do so. I hope you were all able to get some rest last night for the busy day ahead. Praying that everything goes well today!! GO LUCY GO!!

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  34. Lifting your family up and praying for strength and peace for all of you. I came across this website and wanted to share - it might make Lucy's days a little brighter to have something pretty and fun to wear during treatment(and its free!).

    http://www.franceluxe.com/i/goodwishesscarves/GoodWishesScarves.html

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  35. The prayers will keep coming from here in Ohio!!

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  36. God please be with Lucy and her family during her treatments and show us a miracle!! I will continue to pray for Lucy !!! God Bless!

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  37. God's blessings for Lucy to endure her treatments. Praying for all of you in New Iberia, Louisiana.

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  38. We are praying that the radiation goes well and you guys can get home soon to your own beds. We are so happy about PT and her increased stamina! Hopefully you can be home this weekend to relax and enjoy your family. We love you!
    The Garretts

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  39. Kate,
    You don't know me but i found Lucy's blog via several other blogs and from Mindi Henderson's fb page. My mom works at St. Jude (in the research tower) so if there is ever anything we can do for you, please let us know!
    -Leslie

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  40. Kate, thank you so much for posting your schedule for tomorrow!! I am so blessed to be able to pray for Lucy and your family and be able to pray so specifically. Praying with you that God will see fit let Lucy suffer NO side effects.

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  41. My prayers are with you all. My heart was just broken when Carmen told me the news. I couldn't think of a worse nightmare to have to live through. I have always thought the world of you Kate and Eric. I will keep praying that God will see you through this time.

    Heart Huggs.

    April

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  42. God hears us and grants many prayers, so this is such an inspiration to see all of these messages. God bless you all, and let Him lift Lucy through all of this sickness into perfect health. Be strong, and keep that faith going. Come on Little Lucy....you are a beautiful CHAMP!

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  43. You all will continue to be in my prayers. Kate, thank you so much for taking the time to keep this blog updated. I visit daily to check on Lucy. Thanks so much!

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  44. My prayers and thoughts are with Lucy and her entire family all through the day, every day -- AND, they won't stop EVER! Lucy is a permenent fixture in my daily prayers.
    (((hugs))) and much love and healing prayers from South Florida xoxo

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  45. Our girls prayed for Lucy again tonight. They remember to ask about how she is doing and to pray for her. Kids really are the best to watch in how Jesus would want us to be towards those who are hurting. Progress is being made! One step at a time...Take care!

    Carmen Pfeifer

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  46. We pray for Lucy and you guys daily. I know she will beat this. I hope today's radiation went with out any complications. May God continue to hold you all close and whispers in your ear.... I am here let me take this for you!!! Like His word says "in our weakness He is glorified." Your family is using this trail to show His glory. May God bless you all and pray for a peaceful night's sleep and amazing day tomorrow. Rhea Anne and family

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  47. Prayers, hugs, and lots of thoughts coming your way! Nothing compares to watching our children suffer and I just can not imagine the pain!

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  48. I am so sorry to hear of all of your trials. I had cancer when I was 2 and went through surgery and chemo which I still remember and I know (at least from a young child's perspective) how hard that is, but I can't even begin to imagine from a parent's perspective. I hope and pray that Lucy's treatment is successful and that you are all able to remain strong through it. Much love and peace to you...

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  49. My heart goes out to your family. Hang in there!

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  50. Your family is in our prayers. May the merciful Lord wrap you all in his loving embrace and keep you.

    Love and Light,
    Jenny Miller

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  51. For some reason i cant post comments on the lates post, so hear goes: Dear Kate, I have a child with bilateral retinoblastoma, I know what it is to have a child with cancer. Sending as much strength and love as I can upbring to you in this awfully rough time. For me it has helped a lot to meet and make friends with other parents in a similar situation, I hope that you have met some of them too. Big hugs!

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  52. My son, Levi, had bacterial meningitis twice. He couldn't walk either. You know after the fluid on his brain started decreasing the balance issue started clearing up right away. We took him to physical therapy for weeks and were so glad when it turned out to be just that he needed more time. I know that Lucy has other issues that are keeping her from walking but i thought maybe her balance issue might have a little to do with the meningitis. I am still praying for ya'll. I am in awe of your courage and strength. You are doing an excellent job of taking care of Lucy. It might not feel like it at this moment but from the outside we can all see just how well you are doing for your child. Just try to take it minute by minute and don't forget to BREATH. Long deep breaths always helped me. (((HUGS)))

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  53. Kate, You do not know me but I have been reading your posts and I am able to sympathize with your pain. My name is Robin Carpenter and my daughter had emergency brain surgery last March and has since had back surgery where she had 10 vertebrae fused. Her spinal surgeon was worried about a spinal tumor due to her curve appearing so quickly but it ended up being a brain malformation called Chiari one Malformation. You ask how does this compare? With this alone it doesn't, but one month post op from her back surgery on Jan. 22, 2011, our 3 yr. old Seth was diagnosed with leukemia. I am reading your posts and can relate to so much of it with the surgeries and port placements, chemo, counts, infections and cultures. I have prayed for your family many times over the last 2 weeks and have wanted to post something. I know the fear you have and I was sooo able to relate to the comment you made in a post about people telling you that you were so strong. It is so true that we are just a mess inside. I am so thankful you have the Lord and know His will is perfect. Please know the Carpenter's in TN are praying for you and sweet Lucy. If you think of it, please add Seth to your list! We are being treated at TC Thompson's in Chattanooga and have just hit the 2 month mark. Take care, Robin

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  54. Kate, You don't know me, but I can sympathize with your pain. My daughter had emergency brain surgery last March and then spinal surgery to fuse 10 vertebrae in December. Her spinal surgeon was fearful of a spinal tumor due to the rapid development of a scoliosis curve. Her's was caused by a Chiari One Malformation that required immediate surgery. You ask how this compares? One month post op from Emma Kate's surgery, our 3 yr. old son Seth was diagnosed with leukemia. I can totally relate to the port placements, counts, infections, MRI's, and propyphol has become our little guy's best friend. I wanted you to know I have been praying for you and your sweet Lucy for weeks and have just not been able to post yet. I actually wrote a whole post and it did not go through, so if you get two,sorry! Anyway, I really was able to connect with you when you posted that people said you were strong--yes, we are just a mess inside. I am so thankful you have the Lord and know His will is perfect. We have just hit the 2 month mark in Seth's 3 year 3 month stint of chemo--so far there is not talk of radiation. Please know the Carpenter's in Chattanooga are praying for you guys! Take care, Robin

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  55. You are so strong, and your love for your family and your little girl shines through. I pray that she will come through her treatments, and that she will be well.

    You all deserve so much happiness.

    Blessings xxx

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  56. Dear Kate and family -

    I just want you to know that I am praying for and believing in a full recovery for Lucy. "Be strong and of good courage; do not be afraid, nor be dismayed, for the Lord your God is with you wherever you go." Joshua 1:9 I know He is with you today as you start radiation. Lean on Him today for strength, He will be there with you.

    Love - Jessica

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  57. Dear Kate, Erik and family,
    I am joining in with the family of God to lift you all up in prayer. I am specifically asking not only for a miracle but for strength for the moments in each hour of the day.God is going to pour into you endurance to run this race set before you. Remember His mercies are new everyday and He has seen the future. He never grows weary of showing up for us and He does not sleep. May God continue to hold you all close, close enough to hear His heartbeat and feel His presence. Love to you and your family.
    Pam in Puerto Rico

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  58. sweet lucy is in my daily prayers! sending love and positive thoughts from chicago. keep fighting the good fight.

    with love from a fellow cancer survivor,
    dana

    www.appreciateeachday.blogspot.com

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  59. Totally praying into this situation, I can't imagine what you're feeling but I know God always has plans to prosper your whole family. Love from England xxx

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  60. Praying for you all. There are people all over the country sending a little love out for you and your family. Lucy is such a beautiful little girl with such a bright smile! Keep your head up.

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  61. My first thoughts and prayers in the morning are for your family, all the way from Quebec, Canada. Lucy will prove to the world that miracles do happen :) Such a beautiful, strong little girl!!

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