Late Night Update

Today was rather uneventful.  Lucy slept until around 2:00, I had lunch with my friend Sarah and Amanda and my Dad came for a visit.  Lu was supposed to receive her second dose of Vincrystin today, but they had to postpone it for a couple of reasons.  They should be able to give it to her tomorrow though.  She took a couple of walks around the floor today which was great exercise for her.  I often worry about her little muscles (what little she has) wasting away to nothing while she spends so much time in the bed. 

(Lucy and my Dad)

Tonight we spent time on the couch playing Toy Story Dominoes, Toy Story Match and, of course, Candyland (her favorite)! 

The hot chocolate cart came by during game time, too!  What a treat for me. 

Right now there are fireworks doing off downtown.  I'm not sure who is doing them or why they are doing them on the 30th, but either way they are pretty to watch.  It makes me sad to think that we will spend the 4th in the hospital.  We are usually at the lake on the 4th watching fireworks with countless others who take in the breathtaking spectacle.  I look forward to many years of fireworks to come with 3 healthy kids and a wonderful husband!

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Many Thoughts Today

This morning I woke up and Lucy was still asleep.  I took advantage of this time and did a little reading.  My cousin just gave me a wonderful book that I am recommending to everyone!  The title is "Be Still My Soul" and it is edited by Nancy Guthrie.

 It is a compilation of 25 readings, both new and old, on the issue of pain and suffering.  My eyes were really opened this morning as I started in on the first reading about Paul and the pain he endured throughout his life.  One of the questions he was asked frequently was "Where is God in all of this."  Isn't that something we ask ourselves sometimes daily? 

My suffering involves a family whos lives have been uprooted due to childhood cancer and all that it entails.  Your suffering may be your health, a divorce, an aging parent, the death of a spouse or any other issue causing your pain.  So many people have said to me "I don't know how you are being so strong," or "How do you keep on day after day." My typical answer is "You'd do the same thing if it were your child/family."  While that is true, there has to be something much more than just determination and love pushing me forward.  In my niavity it is easy for me to just accept that God is there with me and holding my hand through all of this.  But honestly, there is so much more to it than that. 

While reading it has become obvious to me that there is a great design in God's master plan that has allowed me to harness strength and perseverance that I never knew I had.  When we become Christians we become united with the greatest strength of all.  This world was created to be temporal.  It and the things it inhabits will die and vanish.  That's just the way it is.  Throughout the centuries, suffering has always been a major part of life.  It still is.  What I am learning is that through suffering our good times are better and our rewards in heaven will be that much sweeter.  Not that I will deserve anything more than anyone else (because I SOOO do not), but just as I now appreciate life a little more here on earth due to this suffering, so will I in heaven. 

So.....get the book.  Read it. I pray you will gain a new perspective on your suffering through the readings.

Yesterday was a great day.  Alot different from Monday, when she slept for about 19 hours.  Lucy received blood and platelets yesterday and was put on a CAD pump that administers a continuous low-dose of Morphine.  She had so much energy and wanted to play.  She was up until 10 o'clock last night.  She visited with her grandparents, did crafts with Ella, we colored and worked a puzzle and even watched some movies.  It was wonderful seeing her feel so good.  Today she is still asleep.  She woke up around 10:00 to go to the bathroom, but went back to sleep and is still out!  Her little body is just worn down, so we just let her sleep when she needs to sleep and enjoy the times when she is up and alert. 

To give you an idea of what we look at each day, I have a comparison of her blood work:

                      Hgb (Hemoglobin)                Platelets                     ANC       
Normal          11.5-14.0                              190-490                   1500-8500
Wednesday    7.2                                       25                              0   
Thursday        9.3                                       99

Isn't it amazing what a transfusion will do for a body?  I am so thankful for the many people out there that give blood and platelets on a regular basis.  THANK YOU!!!

Last night my friends Nicole and Christi came to visit.  They brought some yummy G-free food, including some gourmet looking and tasting cupcakes.  I've won favor on the floor with the doctors and nurses thanks to these sweet treats!  Today we are taking it easy.  Erik is coming down to visit with Lucy for a while and I am going to take some time away from the hospital to get some fresh air.  He is such a wonderful husband and father.  God sure gave me a good one!

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I love this picture.  The same theme is represented all throughout the halls of St. Jude.  I wish I knew who painted it so I could give him/her credit.  I have looked at it for months now and it never spoke to me until this past week.  This particular painting was hanging right outside of Lucy's door.  I looked at it every, single day.  It is so powerful.  What does it say to you?  I will post tomorrow with my interpretation. 

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Did I mention that Jack was learning to walk?  I'm told that he makes countless trips around the playroom with this toy that is affectionately known around our house as "push-push."  It's what both of the girls used to learn to walk.  And don't worry.  The pink does not bother him because he is SO secure in his manhood!

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Restful Day

Just as I expected, Lucy has slept most of the day.  Her body is run down and she feels just yucky.  Erik came down and I went to the Target House to gather our things for the next few days.  I was able to take a shower and for that EVERYONE is thankful.  Now we just wait.  They took cultures of her blood and let me do cultures of her nose and bottom today.  They will let those sit in the lab for 48 hours and we just pray that nothing grows.  Most fevers during low ANC are never attributed to anything specific.  It's usually just par for the course.  However, every now and then true infections can set in and things get tricky.  We are just going to pray, pray, pray that everything stays uneventful around here for Lucy.

The source of contention for her is her mouth.  The oral mucositis that had reared its ugly head during irradiation has returned.  She can hardly swallow and her throat is raw and sore.  She won't even swallow her saliva, which is as thick and sticky as glue.  We have a suction in our room that she is learning to use.  The worst part is that she gags on it and then starts vomiting.  Once her ANC starts to rise, the symptoms should subside. 

While I am here this week, I am going to try to finish updating pictures from 2010 so I can print my blog book for last year.  I've got a lot of catching up to do.  The hot chocolate/coffee cart just came by so I am going to work with my hot chocolate in hand.  This is the part of the evening I look forward to the most.  Volunteers come around with the cart each night and it is such a nice gesture. 

Since I can't have a post without pictures, here are some that I had taken with my phone that I wanted to post. 
 Ella and Lucy at the top of Laurel Falls

 Jack asleep in the exersaucer

How cute is this chunky monkey in his carseat?

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Room with a View

And boy, was it a nice view!  If you stood just right, the Pyramid was right, smack-dab in the middle of Lucy's window!  It was a refreshing view each morning. 

(Erik giving his best macho-man impression)

Here are some other pictures I took of Lucy's room.  We painted her window..

Here is the couch that fold out into a full size bed...

This purple frame housed the painting that Lucy did in the playroom...

Buzz greeted the doctors and nurses each day...


Looking down the hallway...

Toy Story 3 friends helped decorate the room...

And lastly, my favorite picture.  Lucy looks so small in her bed....

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Please check out my friend Sarah's blog.  She has two precious pups who need a home.  Just like many of us, life has thrown Sarah a few unexpected and definately unwanted curve balls lately.  Her two cuties need to go to a good home!
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We were at the hospital around 7 this morning.  Darn fever!  It was in this moment that I realized how important it was for us to be at the Target House.  I had been watching her temp closely all night.  I think I checked it every hour to an hour and a half.  She stayed in the upper 99's all night and was generally just restless and uncomfortable.  She can't have Tylenol, so I just held her and tried to keep her comfortable.  Let's just say momma didn't sleep much either.

By 6:45 her temp had hit 100.4, the magic number.  I got up, threw my computer and iPad in my bag, grabbed my phone, managed to brush my teeth and ran out the door.  I didn't wash my face or brush my hair.  Thank goodness this short hair is growing out and I can put it in a ponytail.  So, we have been sitting in B Clinic since we got here.  She has had a dose of Vancomycin, a catch-all that hits the body pretty hard and one other antibiotic that I did not catch the name of.  We are waiting on a room. 

Her fever broke on its own and is now 98.2.  Geez!  Even still, we are here for the long-haul.  Probably a week.  Even if she doesn't run a fever again, we are still here until her counts rise above 500.  I prayed last night that God would let his fever pass, but that if the hospital was the safest place for Lucy we would accept that.  I guess He felt she needed to be here and we are just going to be thankful we have a safe place to rest.  This is all part of the process.  We just have to roll with the punches--good and bad.

We are about to move to our room now.  I will update later today. 

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9 Months

Last week, Jack turned 9 months old!

When I say he doesn't sit still...I mean it.  Seriously.  He moves all the time.  My mom holding him like this was the only way I could get a picture of him.  Thank goodness for digital cameras.  I bet I deleted 20 pictures and this was the best I could get!  He goes to the doctor next week for his checkup, but I am guessing he weighs 21 pounds.  He is about to outgrow his size 3 diaper, has two bottom teeth and is almost walking.  He can stand for a long time with no assistance.  Jack's two upper teeth are starting to come in as well.  I can only imagine that the next few weeks are going to be lots of fun!  I still declare he is the happiest baby ever.  I just love that little man!

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One More Day Down

So far, so good.  No fever and Lucy is just rocking along.  Thankfully we had an uneventful day today.  I took pictures of her with her new physical therapist today, but just realized that that disk wasn't in the camera today.  What a brainless moment.  Her ANC was 100 today, so we are basically on lock down.  We will get out of the apartment for trips to St. Jude and that's about it.  Some people are brave and go out more but right now we are good to stay put.  Visitors are being kept to a minimum, too.  Her doctor told me today to think of her as a newborn before her vaccinations.  No crowds, lots of sanitizer and no one in her face. 
On a completely random note, did you ever wonder what a person with Celiac disease eats for lunch?  I'm sure its been the most pressing thing on your mind, so here you are....

Caramel rice cake with white chocolate peanut butter and tortilla chips with hummus.  The hummus was already gone when I took this picture :)  Pretty boring, but surprisingly good!

I've had several people ask me lately about Lucy and Ella's understanding of her cancer.  It's pretty simple, because that's the way we want it to be.  When Lucy was diagnosed, the Child Life Specialists at LeBonheur were wonderful to explain to both of them, in terms that they could understand, what was going on.  She said that Lucy had "sick spots" called cancer and that she needed surgery and lots of medicine to make her better. 

We generally take each day/phase of treatment as they come.  For example, we never talked about Chemo until it was actually time to deal with it.  We still have not told her that she has 4 cycles to complete, will spend lots of time in the hospital and will feel like crap alot.  I just don't think it is necessary to fill her little mind with too much information.  The same for Ella.  I am willing to tell her a little more, but I am still fighting like mad to protect her as much as Lucy. 

 I know that they both understand more and comprehend more than I give them credit for, though.  Lucy has surprised me with some of the things she has said.  Most importantly, I pray daily that God will give both of them a peace and acceptance that passes all understanding.  It's a peace that I believe only God can provide.  I've said before, but Lucy has the most wonderful spirit about her.  Even today she was mad she had to wear her mask and hated every minute but through tears said "Yes, m'am.  I will wear it."  She just gets it.  It blows my mind honestly. 

Also, to answer another question I've had alot, we are NOT using umbilical stem cells for Lucy.  We are using her own stem cells, which have not been affected by cancer and are healthy.  It is called an Autologous transplant and is the most effective in dealing with this type of cancer.  She will have another harvest in the next few weeks to collect the rest of the stem cells necessary for the last 2 cycles of chemo/transplant. 
Ok, so that was my random post for the night (minus the pictures from PT, which were really cute!) I do have this really cool picture, though. 

Even Mike Ditka says "Go Lucy Go!"  Thanks Laura Drew!

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Thank You

Thank you all for the overhwelming and encouraging response to my blog post yesterday.  My heart is full as I just read how many people were praying for Lucy and our family.  The blog world has proven to be an unexpected support group that I cherish deeply.  Almost every comment I received last night was from a "stranger."  I am reassured today that there are some really, really wonderful people in this world. 

Thank you for caring about Lucy and for loving me!  Us moms/women sure know how to stick together!

We are off to the hospital for check ups this morning.  Please remember our sweet friend, Lanie.  She is having an MRI today and she needs this one to be good.  Her dear parents must be a wreck this morning.  Praying that the God of mercy and grace will bestow His presence upon them in a mighty way.
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**This post is for me.  Please do not comment if you are going to tell me how selfish I am or how much I should really be grateful for.  I am having a minor pity party and quite honestly I feel as if I am entitled.  If you don't want to hear it, please stop reading now.***

This is hard for me to say outloud, so I am hoping that writing it will help me process it a little better.  Even now, my mind is racing with so many thoughts that I can hardly pray.  I hope God will hear my heart through this post.  I have had Jack and Ella most of the morning by myself here in this apartment.  It's been a struggle to be honest.  No one has "their space" here so I have spent most of my time keeping Jack out of the toilet, the cabinets or out of the girls' stuff.  Ella is itching to get downstairs to the library and I just want to take a shower.  Lucy and Erik are at the Jude right now having her blood drawn, getting her G-CSF shot and meeting with the weekend on-call doctor.  (All of which were great, btw.  ANC is spiking right now due to the G shots.  It will get really high over the next 2 days and then should start to plumet almost instantly.)

Eventually, Ella, Jack and I made it downstairs to the library and great room.  Jack was exhausted (because he woke up 4 times last night) and is having a hard time sleeping in his borrowed crib. I have put him down for 3 naps today, only to have him wake up 20 minutes later.  When Erik and Lucy got back I brought everyone up to put Jack down for another nap.  While Erik was doing laundry down the hall, Lucy started vomiting, Jack was screaming to be picked up and I was fighting back tears.  That's when it hit me.  I just can't do this the way I had hoped. 

I'm notorious for building things up in my head and dreaming of a perfect scenario, only to have reality smack me back down to earth with a loud "thud."  It hurts sometimes.  Mostly my feelings.  Today was one of those days.  I had big plans to keep Jack with me during the week.  He could go to her doctor appointments with us and then we would come back and hang out in the apartment.  Ugh...not so much.  Here are the scenarios that make this almost impossible:

-Lucy starts vomiting and he is playing in the toilet or needs to be gotten out of his crib.
-We go to the doctor for a "quick" check up and she is running a fever.  Immediate admission to the hospital  to the BMT floor, where Jack is not allowed.
-We go to the doctor for a blood draw and her platelets or blood is low.  She will then get a transfusion that will take 4-5 hours.  Can you imagine keeping Jack content for that long? 

Ok, so you get my drift?  Man.  This stinks.  I just want my family together.  But the reality is that I have a sick child who demands and deserves my undivided attention.  I pray to God everyday with such intense fervor that He is healing my child.  I know He is, and I can hold on to the hope that in 4 months this will all be over and we will go back to a normal life.  A life that includes all 5 family members sleeping under one roof in our home sweet home.  I can not be the caregiver that Lucy needs if my attention is divided between all three children every day. 

So I will count on my wonderful family and friends who will work diligently to make sure that I get to see my children each and every day possible.  Mom, Dad, Grandma, Grandpa and other friends...THANK YOU!  I wouldn't be able to make it through this without you all.  My hope is that when Lucy is up to it, someone will bring the kids down at least every other afternoon to visit.  Even if I can get my hands on them for a few hours at a time I think it will help fill that void of not being there all the time. 

As I've said before everyone has their cross to bear.  Everyone here misses their families.  And just because I should be "just so happy" that mine is only an hour away, that doesn't always make it easier.  I'm still a mom and I miss my children.  I'm still a mom and I want to have my family whole again. 

I'm just a mom, not super woman. 

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11 Years

Lucy's last day of Round One was a special day for another reason.  Erik and I celebrated 11 years of marriage.  We dated for 5 years before we married, so we have been together for almost half of my life! 

I just wanted to tell you, Erik, that I love you.  You are a wonderful husband and father.  We are going through the trial of our lives and I wouldn't want to walk this road with anyone but you.  God set us apart to be together before we were even born and I am so very grateful.  You are truly the best thing that ever happened to me. 
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Stem Cell Transplant Day Zero

(Lucy was not happy about having to be hooked up to the heart monitor for 4 hours today)

In a rather uneventful turn of events, Lucy received her stem cells on Friday around 11:00am.  The whole process had been hyped up pretty good so we were rather anxious the whole morning.  Neither of us even wanted to go down stairs for breakfast in case they were to start early or something.  The biggest thing we knew to expect was that Lu might have some reaction to the preservative used to freeze her stem cells, Dimethyl sulfoxide (DMSO).  It is said to leave a horrible taste in your mouth that resembles garlic and the stench that oozes from her pores is not any better.  It smells like creamed corn.  Canned creamed corn.   Weird, I know. 

Almost immediately, as they began to push her cells in, she started vomiting.  Luckily it was not a horrible episode but she did complain of a bad taste in her mouth.  Her heart raced for the rest of the day, prompting an EKG, a UA and blood work.  Thankfully everything turned out ok and the docs assumed the rapid rate was just her body's reaction to the cells. 

Here are some pictures of the day. 

(these are the actual stem cells)

(they are administering the cells with a syringe that looks like a turkey baster!)

One round down, three more to go!

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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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