Friday, July 29, 2011

Day's End

It was another long day for my sweet Lucy.  Lots of doctors appointments and then a transfusion at the end of the day.  I had to handle her utter disappointment when they cancelled her PT and OT because her hemoglobin was so low.  Lucy has come to love both of those activities.  I think it is because that's all she has.  Going to PT and OT is equivalent to Ella going to violin practice, or playing soccer.  It's her chance to be active and even exhibit a little of her competitive spirit.  Just typing that makes my heart ache for her to be home and back to a normal life.  Good Lord willing....soon.  Very soon. 

We are going to be spending a lot of time as a family this weekend.  I am really looking forward to some time with Ella and Jack.  Here are a few random thoughts that I wanted to remember:

-Justin and Lanie had MRIs today.  I am so anxious to hear their reports.  I can only imagine how their parents feel.  Wait, yes I can.  I know exactly how they feel.  We will be doing it August 10th.

-I've been addressing thank you notes like crazy and loving every minute of it.  Some of you will get duplicate postcards.  My mom has been helping me so there is no way to know if more than one went out for those who have sent multiple gifts/cards.  I know some people think I'm crazy for doing this, but I am still amazed at how many people care about my little girl.  Thank you all.

-Lucy has a secret fairy named Fairy G.  I think that is too cute!  She sends little "happys" periodically and it always makes us smile.

-A sweet girl names Jenn sent a letter today with a Bible verse that really spoke to me.  "For this momentary light affliction is producing for us a weight of glory beyond comparison."  2 Corinthians 4:17.  May the Lord he glorified every day of Lucy's illness and may we all walk away from this changed for the better.

-And this card, from The Rhyner family read "Praying that the doctors receive God-inspired wisdom as you rest in the Lord's comforting peace."  Amen?  Amen!

We are a blessed family.  I still say a million breath prayers a day for Lucy's complete healing and for a lifetime of remission.  I place my trust in God.


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Thursday, July 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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Tuesday, July 26, 2011

Jack's Photo Session and Life

If you want to see what pure heaven on earth looks like, you should check this out:

http://philramsey.wordpress.com/2011/07/26/one-of-my-favorite-little-boys-in-the-world-mr-jack-krull-it-is-a-true-blessing-and-a-joy-to-photograph-when-i-know-jack-is-coming-i-know-my-job-will-be-easy-that-day/

Ok, so maybe I am biased, but he truly is an angel.  Having the pictures made is the easy part.  Picking out the perfect one is the hard part.  Thank you Phil for capturing the magical moments of my children's childhood.  The photographer, my friend Phil, is a wonderful Christian man who has perfected the art of the portrait.  Funny thing is, his own father took my baby pictures. 
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Lucy's ANC dropped to 0 today.  We weren't surprised, but now my stomach remains in knots as I just wait for the fever to hit.  Erik's parents and sister came down to visit Lucy tonight so my mom and I took the opportunity to go get dinner with my sister.  I wish I could say I really enjoyed it, but that would be a stretch.  I did enjoy the time with my family, but I was a nervous nelly the whole time I was gone.  This is such a volitile time in Lucy's recovery and it's hard for me to walk away even for a moment.  I'm quite sure it will be a very long time until I feel as if I can let go.

More than likely she will receive blood and platelets tomorrow.  The low ANC, the low blood counts....they are all related.  This waiting game is hard, but we are thankful for every single moment out of the hospital. 

Here are some pictures from the last few days at the Target House:




 (My little Sunday morning chefs.  They cracked 12 eggs for the two of us.  Erik just couldn't tell them to stop.)






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Monday, July 25, 2011

It's Been A Day

(All the cool kids wear masks)

Yes, it's been quite a day around here.  Lucy had another horrible night last night.  She was up 6 times.  3 vomiting and 3 for the bathroom.  I adminstered IV antibiotics in the middle of the night and took an hour.  Needless to say we were all thankful to sleep in a little late this morning.  After we had been up for about an hour or so, Amanda noticed something different about the bulb of Lucy's shunt.  It had completely inverted.  I absolutely freaked out.  I sent a text out to our neurosurgeon's assistant and within 15 minutes Xrays and a CT Scan had been ordered.  We made a mad dash to get dressed and showered and headed to St. Jude.  My stomach stayed in knots for hours as we waited on the results.  Her shunt had corrected itself, but I knew that what I saw was not normal. 

Around 4:00 this afternoon we got the call that everything looked ok---Praise the Lord!!!  We still don't have an explanation and can't explain the forceful, almost violent vomiting in the middle of the night.  Luckily we will get to see our Neurosurgeon on Thursday and I look forward to getting some answers.  Please say an extra prayer tonight that we won't have any more problems with her shunt.  I've aways been scared of it for some reason and today's incident did not help.  If she were to need surgery to correct any kind of malfunction it would be so dangerous right now.  With her immune system so compromised right now, she would not have the ability to fight off any germs she might pick up in a hospital or in the OR.  Ugh...I can't even think about it. 

"God, please protect my sweet baby girl.  She is already going through so much." 
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Sunday, July 24, 2011

A Few Thoughts

Another day down.  Lucy is such a rock star.  She had another injection today of GCSF.  Erik took her and said she screamed for 5 minutes.  As soon as it was over, she stopped and said "that didn't hurt, it just scared me."  Poor girl.  After this round, we will go back to IV, but as I said it is a necessity right now.  Last round she ran the fever on Monday night/Tuesday morning.  We are praying to make it longer this time.  We know that there is a 99.9% chance she will get a fever at some point, but each day we are outpatient is such a blessing.

Erik had to go home tonight so that he could return to work tomorrow.  Amanda is with me tonight and my mom will be staying for the next couple of nights (I hope...).  I so enjoy having adult company.  The conversation is so nice. 

I am in major loathing of my sister and Amanda right now.  I absolutely swore that I would NOT get involved with Pinterest.  I had done great at avoiding the situation for the past few weeks.  Then tonight....well, let's just say I'm hooked.  I HATE this stupid website that has, almost effortlessly, created an addict in less than 30 minutes.  Jack's first birthday is coming up and I am making a board of DIY projects for his Pirate theme party.  The reality is that I won't get anything done, but I want to have a sweet, small party for him just the same.  Anyway....I hate and love Pinterest all in the same breath. 

Thank you for your prayers for Lucy.  I can't believe that by October, if the good Lord allows, this will all be a nightmare that we have finally woken up from.  I'm ready for my baby to be a child again.  We will start homeschooling soon, but I can't wait for her to join her Kindergarten class at the best little Christian around!  She got a backpack today and was so very excited.  She deserves to be a 5 year old. 
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Saturday, July 23, 2011

Ribbons--All Gone

Hello to all.  All the Ribbons have been sold.  If there is another shipment ordered, I will let you all know.  Today you all helped raise almost $400 for St. Jude.  Way to go!!!!


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Quick Update

Lucy had a wonderful day.  She was NOT happy about her G-CSF injection, but took it.  She finally told us she was scared and that is really didn't hurt.  We had family visit today and we all had a great time.  Lucy just went to bed but got sick almost immediately.  We are all headed there now.  So very, very tired.  Thank you for your prayers.
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Friday, July 22, 2011

Ribbons for St. Jude

***As of 2:30 on Saturday, all the Ribbons have been sold.  Thanks to everyone who bought one!  Your support of St. Jude is greatly appreciated****


A local children's boutique in my hometown, The Freckled Frog, has these wonderful hair ribbons for sale.  The owner is a wonderful friend of mine and she has about 35 left to sale.  If you are interested, I would be willing to mail one to you.  They are $10 and ALL the proceeds go to St. Jude--not me. 





Here's how it will work...

1. Email me at k8krull@gmail.com and let me know if you want one.  I will keep a list and let you know once the 35 are gone. 

2.  Send a check made out to St. Jude Children's Research Hospital for $10 to the following address.  I will pay postage to send it to you!

Kate Krull
c/o Target House 1
1811 Poplar Avenue
Memphis, TN  38104
Room 300


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Home Sweet.....

Home away from home.  We are settled into the Target House, thankful for a nice, safe place to lay our  heads tonight.  We got discharged from the hospital around 6pm, so we are all very tired.  Lucy has an appointment tomorrow at noon for her first G-CSF injection.  And yes, I said injection.  We are not going to take our chances with the IV form and she will have to have a shot for the next week or so.  We are dreading it, but the threat of a fourth cell collection is unbearable. 

When I went to pick up dinner tonight, I parked close to this car...


You probably can't tell what it is, but this person has a Go Lucy Go decal on the back of their SUV.  I was so blown away that I sat in the car with tears streaming down my face.  I don't know the owner of this vehicle, but wanted to find them and hug them and tell them "thank you" for loving my daughter.  It was awesome. 

I should have my hands on Ella and Jack by 10am.  I am beyond excited.  Erik and Lucy just went to bed.  I'm following behind them.  It's been a long week.  There will be no one coming in every two hours tonight to check vital signs.  Yipee!!!
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Stem Cell Transplant


Lucy has her stem cell transplant at 1:30 today.  If all goes well, we will be sleeping soundly at the Target House tonight.  Things are not likely to NOT go well, but just case there are emergency medicines taped to the wall within arms reach while she has her transplant.



Lucy refeuses to get in the bed, so she is curled up on the couch with her legs hanging off while she watches Dragon Tales.  Such a funny girl!


Thanks for the prayers this round.  In a few hours we can say "2 down, 2 to go."  Now we just go from here and pray, pray, pray for no fever!


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Thursday, July 21, 2011

Quick Update

Exhausted.  That's the word to describe how everyone here feels tonight.  Lucy passed out (almost literally) around 6 after a round of vomiting.  She had a rough morning but picked up some energy around noon and pushed herself until she fell asleep.  Ella and Jack came down again today so Erik and I both got to spend some time visiting with them.  Thank to Erik's parents and sister for making that happen. 

The line nurse came in today and declared that Lucy's infection is healing nicely.  Praise God!  That central line makes me nervous as it is but I was a nervous wreck worrying about an infection.  That could have been a real nasty issue.  She is still on the heavy antibiotic and will stay on it for a week or so. 

Tomorrow marks the last day of round two.  We are so very thankful for a relatively uneventful second course.  God continues to bless our family and we are ever so grateful.  We have faith that every day He is laying His healing hand upon Lulu.  She will receive her stem cells tomorrow at 1:30.  We will wait a few hours then, good Lord willing, we will be discharged to the Target House.  The doctors are pleased that she has not ran a fever since Tuesday, so as long as we don't have one in the next 20 hours or so we will be able to leave.  If she does spike a fever, for any reason, we will be inpatient for up to two weeks.  We are PRAYING HARD!!!!!


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10 Months

If at first you don't succeed, try


and try....


and try.....


Again!  It took way too many tries, but I did get one decent picture of Jack at 10 months.  All 21 pounds of this size 3 diaper, 75th percentile, 4 tooth, size 12-18 months clothes wearing bundle of energy.  After our photo session I was exhausted!






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Wednesday, July 20, 2011

Round 2, Day 3

Today has been an exhausting day for all of us.  Since Lucy recevied the Cyclophosphomide and Mesna, she has had to pee every 2 hours.  This will continue until 10am Thursday.  I got up with her last night and Erik will have his turn tonight, although I will inevitably be up with them both.  Just like most moms, I hear every sigh, every breath, every toss and turn in her bed.  I try to sleep through it, but my heart won't let me.  Lucy is also teetering on the verge of a fever.  We feel fairly confident that she has a small infection at the site of her central line.  To be safe she is being treated with 2 IV antibiotics and 2 medicated ointments.  We are praying constantly that his matter will be resolved without any major complications. 

So, after a long night for us all I awoke to the sound of a "thump-thump-thump" around 7am.  I was a little agitated to be honest, then I walked into the room and found Lucy sitting on the window ledge, throwing a ball to her Daddy.  Apparently, she thought it would be a good idea to practice for physical therapy.  I horse-laughed and then got in the shower.  It was a rude awakening, but a funny way to start the day for sure!  Here she is waiting patiently for her Chemo to start so that she can go to PT.  Just a few months ago she screamed and wailed when it was time for PT.  This morning she cried because she couldn't go!



Before we could go to PT, she had to have her morning check-up.  Mrs. Kim came in and Lucy helped with the exam..


Today was Sibling Start day at St. Jude.  My mom brought Ella down and Erik and I were able to spend some great time with Ella.  As expected, the Child Life staff at St. Jude and the Volunteens did a wonderful job today.  There was no stone left unturned when it came to making the siblings feel like superstars!   They even had a red carpet for the kids to walk down. 








When we got done, Erik took Ella up to the room and she and Lucy curled up on the couch and watched a movie together.  Lucy had been asking for her sister all day so I think she really enjoyed this time with her.  When it was time for Ella to leave, Amanda and I went back to the room and this is what happened..


Lucy was one tired little girl.  This was around 2:30 and she has not been up since (except for a fun period of medicine taking and pottying).  My sweet sister brought us a homemade meal and it was wonderful.  She sat and watched Lucy sleep while Erik and I had a date night in the family nutrition room.  Tacos and Food Network Star.  Romantic, right?  Then we came back in the room and finished this 1000 piece puzzle we started last night.  So much for catching up on my 2010 blog posts. 



Just last week I sent out 382 thank you notes.  I have more than 100 more that I am working on right now.  There is no way I will remember everyone and so many of you who sent gifts, cards, money or food in the very beginning weeks at LeBonheur probably did not get written down.  I just want to say thank you again for the outpouring of love and support that you all have sent our way. 

I would be remiss if I did not say thank you to the following people today.  My sister for dinner, my mom for bringing Ella to us, the Hunt family for the yummy snacks, my friend Jackie and her dance studio for the wonderful gifts and Erik's family for taking care of Ella and Jack this week. 

We feel so blessed and consider ourselves eternally grateful for what you all have done.  And while we might not ever get the chance to pay you back personally, please know that our goal in life, once Lucy is well, is to find a way to pay forward what has been done to us on a grand scale.  God is preparing us for a great calling.  I just pray that we will be still and listen as He reveals his plan for Lucy and our family. 




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