Thank you to ALL that helped get gift cards and shoe boxes to Children’s hospital this Christmas.  Abby Vandiver, a childhood (baby) cancer survivor, and her family and friends partnered with us to make this happen this year.  We did not have a shoe box party, because people were interested in giving and had too much in individual holiday schedules.  It all worked out for the best.

As for the kids on 4 Tower receiving the presents, 6 of the children were in isolation at the time were given to deliver the shoe boxes.  The nurses had 4 Tower in lock down.  They had a sterile environment set up in the hallway, so Lydia and I were greeted in the Lobby by a Child Life specialist who took our gifts upstairs and passed them out after the procedure was over.  Lydia cried.  She really wanted to see her nurses.  It is so neat that she has no aversion to the hospital, but loves the staff.  That speaks VOLUMES about the staff and God’s grace.

On December 11th, I would like to invite you to come together to pack small clear containers with our family for the hospitalized children here at Children’s.  During the hustle and bustle of Christmas it a special time to share with our children (and our own minds) that there is far greater need than our own.  We will have a time for writing our cards to the kids, prayer for the kids, and celebration of Jesus’ birth and finished work.

If you are interested in joining with us:

·        Let me know by leaving a comment of emailing me: leapnlizzie@gmail dot com.

·        If you would like to participate, but can’t come in person, let me know and you can send the box to me to pass on to a child.

PACK

·        Choose a boy or a girl.

·        Choose an age range

o       2-5

o       6-12

o       13-18

·        Get a new small clear container (about shoebox size) Germs are very important to keep away.

·        Fill you box with gifts!

GIFT IDEAS

TOYS
small cars, legos, dolls, kazoos, harmonicas, small Etch A Sketch®, toys that light up or make noise (with extra batteries), Slinky®, etc.

SCHOOL SUPPLIES
pens, pencils and sharpener, crayons or markers, stamps and ink pad sets, stickers, writing pads or paper, solar calculators, coloring and picture books, etc.

HYGIENE ITEMS
toothbrush, toothpaste, mild bar soap, washcloth, etc.

OTHER
Hard candy and lollipops (please double bag all candy), mints, gum, T-shirts, socks, ball hats; sunglasses, silly bandz, necklaces, bracelets, watches, flashlights (with extra batteries)

A PERSONAL NOTE
In a separate envelope, you may enclose a note to the child and a photo of yourself or your family. Please consider adding a gift card for gas or food for the family ($10-$25).

These kids are very sick, but aren’t any different from the kids you know.  They come from a variety of backgrounds.  Cancer touches all ethnicities, all monetary classes, and all faiths.

DO NOT INCLUDE:
Used or damaged items; out-of-date candy; hair products (kids loose their hair during treatment); medications or vitamins

Please pray for these children and their families during this very tough time.

1. Give her Ibuprofen.
2. Make sure the fever responds and goes down
3. Go to clinic Wednesday morning to have her checked out

She said that I could call the Stem Cell floor also, just to make sure that waiting to morning would be alright.  She still has a shunt in her head, so they want to watch it for infection too.  They were all in agreement to wait and go to clinic in the morning.  THIS WAS HUGE!!!

Thankfully, we already had an appointment set up to see Dr. Cook.  Her labs looked great.  In fact, it was the first time she was not dehydrated in probably 8 months!  Her lungs sounded clear, but she definitely had a sinus infection.  We went home on amoxicillan just like a normal kid!  In the mean time she is laughing, jumping, and acting normal.

Brothers also developed sinus infections by Thursday morning.  They began Amoxicillan as well.  By Friday night we drove to a Florence to a fun family reunion.  Sounds crazy, I know, but I had cleared it with the doctors and the family and everyone was in agreement for us to attend.  Now then, I don’t have air conditioning in the minivan right now.  So we waited until the sun started going down, so that it would be cooler.  The kids pretty much napped the whole way (all but one big boy).   When we arrived, it was so exciting and fun…family, commotion, and toys.  Everyone acted liked they felt great.

Saturday morning, Lydia got up happily, but when I fixed her hair, she wanted me to rock her.  She was pretty grumpy.  She saw that brothers were going to go boating on the Tennessee River, so she perked up and got ready too.  She fell asleep on the boat (in the shade) and when the boat ride was over she was VERY cranky.  I put her to bed as she thrashed around until she fell asleep.  As we lay there, she gets hotter and hotter.  Her temp got up to 102.5, so I called the phone nurse.  The nurse was concerned mostly about the shunt since she had been on antibiotics for 3 days.  We walked through many different scenarios, but when I got her up to give her the ibuprofen, she held her head with two hands screaming “ou-wee, ou-wee!” at the top of her lungs.  So we decided to jump in the car and head back to Children’s.  Jeanette gave us her air conditioned car to travel in since Lyd didn’t need to be over heated.

The boys stayed out on the lake with grandparents, uncles, aunts and cousins.  Today they are still having a great time!  They will return either tonight or tomorrow.

Once at the ER, she had a series of X-rays and a CT scan.  Her shunt looked exactly how it was suppose to look and the ventricles looked good as well.  This was huge.  No neurosurgery!  Turns out she has developed pneumonia.  It is a very light case of it, thankfully.  Her antibiotic was doubled and then they sent us home.  How good it feels to be home.

This morning I have the crud though.  I don’t feel like I have and infection, but my body is fighting those cold germs hard.  I hope to have my energy revitalized by the time my sons return!

Thanks for the prayers.  We are so grateful.  We are trying to live moment by moment and placing each moment in the control of our Father.

Please pray for HUNTER JONES.  His mama has been friends with us since college.  Mandy has walked with me throughout Lydia’s journey.  Now her son, HUNTER, has been diagnosed with leukemia (ALL).  They are working on getting him into remission then having a bone marrow transplant.  Please, please pray for them as they are on their journey.  Mandy is updating the family blog more than the caringbridge site so that link is here. Please pray for their whole family.

Have you ever walked into a trap that triggered an event in your life that cuts deeply and you were surprised by your reaction?  I had that experience when I took Lydia to the dentist a week and a half ago.  The particular dentist’s office is pleasant enough, but when I brought my three preschoolers for their appointment, Lydia was refused to be seen.  I was accused by the hygientist of not getting them a letter stating that she could be treated.  I don’t know what sent me into a spiral.  I understand that the doctor wanted to cover her bases on risk to treat her.  Maybe it was the stress of knowing that Lydia had cavities or it was the accusation of being a bad parent.  I don’t know.  You try to do your best, but that isn’t good enough.

They saw her last week, and told me that she did indeed have cavities and would need to have one day surgery at Children’s  Hospital to take care of it.  The only problem is that she doesn’t do surgery during the summer.

Grandparents are very good friends with a pediatric dentist in town, who use to teach at the school of dentistry.  He gave me a call after speaking to the Grans and was so wonderful to give me all of his phone numbers and said that we were family.  He saw Lydia the next day and agreed that she needed surgery and that it would be done as soon as possible.  She will get 4 crowns on August 3.  She will be worked in earlier if anyone cancels.  They go to Children’s every week, but right now they are booked.

Ok, so I knew that her teeth would have a weird side effect of her previous treatment,  but here are the specifics:  She has feeding issues.  You may remember that she was fed via a blood line or through a feeding tube for about 8 months of her baby life.  When she was bottle fed, I could give her a bottle while she was asleep to keep her hydrated if she did not get enough during her waking time.  Even then, she would refuse a bottle of water while she was asleep, but except milk.  I finally gave up these feedings and now when she goes to clinic she is most often dehydrated.  So much so that I am to do what it takes to make the girl drink.  I only offer her apple juice, milk, and water.  I have just started freshly pressing apples to get pure apple juice without citric acid or any sugar or anything to not hurt her teeth.    I am my wit’s end balancing how to take care of her fluid intake and her teeth.

In addition to all of this, she has GERD (acid reflux).  This too rots teeth.  The good news is that her enamel is growing normally!!!  That was a scare.  When she is put under she will get her first set of x-rays on her teeth.  I am hopeful that she has some adult tooth buds forming.  Because she had Total Body Irradiation so early in life they might not form…but there is HOPE.

Thank you for letting me share my frustration and prayer requests with you.  I am in a really good place, resting in the one day at a time aspect of life.  God gives peace thankfully.

Lydia continues to reach goals with leaps and bounds.  Her end of the summer goal was to be able to use two and three word phrases.  She has bypassed this with full sentences.  She can throw a good old fashion two year old fit, but they are not that often, and I am so glad to see her expressing herself.  She graduated from the Bell Center on her re-birthday last month.  Yes!  She is two years past transplant!  She is officially stamped “S” for Survivor!

I still keep her covered up, in long sleeves and pants even though we live in the south.  That is the one thing that continues to be crammed into my head.  We are trying to spend a lot of time outside, but mostly in the morning and late afternoon.

We are officially back at church.  We love it!  Dewey, has been a bit more skeptical about going to his Sunday School class.  I have taken him in to “Big Church” but he doesn’t last very long, even with toys and such.  Last week I taught his class and that was very helpful.  The first day of VBS, he was nervous too, but Huey took him by the hand and invited him into his class.  The church was very accommodating and Dewey loves it!  I am surprised that I haven’t been able to get more work done at the house.  I was hoping to catch up on laundry and declutter the kitchen.  All the stuff that should be done.  This morning Dave said to leave it, that I should take the morning to write.  I am thankful to be able to declutter my thoughts!

For the past few years, I have been blessed to have friends, family, and even strangers give me Bible verses to feed me.  During that time, God was so present.  He was everywhere I turned, I didn’t have to seek Him.  He is in my thoughts much of the time, but I still hadn’t really sought after Him as the manifestation of Him dimmed.  Thankfully, in January David and I started to go to a Bible study taught by a woman (ex-counselor) who God has really used in our lives to let go of things to help set us free.  Then in April, I went to Captivating in Colorado and saw God’s pursuit of me again.  In May, hubby went to a retreat and he was given a new desire for God.  Now it is June, and we have begun “Love Song”.  Which is a Bible Study on Jesus endless love for the individual…”me” or you.

I have a desire to hear from God in His Word, though I am still unwilling to pick it up as often as I am thirsty for it.  That always surprises me.  But it doesn’t slow God’s desire for me down and He calls me still.  What a wonderful God!

I knew I was in the right place, when upon arrival to the Captivating Retreat in Colorado, Stasi Eldridge, asked which common Fairy Tales capture our hearts as women.  The girl right behind me shouted out enthusiastically “Pride and Prejudice”.  I had arrived.

This four day retreat was nourishment for my soul.  Over three hundred women attended with expectant hearts to worship and adore the leading man in their lives…Jesus.  It took my breath away and the Holy Spirit showed up!

Why would a Christian retreat be showing clips from Pride and Prejudice and many other heart pumping movies?  The premise for the retreat is based on a book Staci and her husband wrote together called “Captivating”.  These stories that get our heart longing with love and adventure are because we are apart of a larger more beautiful and dangerous love story.  Our hearts bear the image of God and they are longing to be pursued, needed and be beautiful.

I thought it was comical that there was a pack of tissues under each seat in the conference room.  Little did I know that I was going to cry buckets of tears and have to borrow everyone else’s, because I ran out on the first or second day!

I have so much to share and so little time!  If you have never read the book “Captivating” or if you are a man “Wild at Heart”, I encourage you to do so. You may be able to pick them up for free at paperbackswap.com.  I yearn for the Word of God like I had years ago.  I am so thankful for their ministry.

Lydia went to clinic this week.  Her labs looked great!  We have to go back on Monday, because we need 17cc’s of blood to send to Seattle for her two years post transplant bleeding.  Her re-birthday is coming up quickly!  My only concerns are that she is still having slight GVHD (bone marrow rejecting her body).  It is controlled with topical steroids on her skin.  Also, her stomach has been MILDLY upset since I went on the retreat.  Gut GVHD is a possibility.    Lydia was also dehydrated.  I have such a hard time getting her to drink all that she should.  Please join me in prayer against these details.

I also have a prayer request for baby Piper.  She is nine months old now, but was diagnosed with infant leukemia (ALL) when she was only 10 weeks old.  My understanding is that she is doing well in her chemotherapy protocol, but it is a LONG road.  Please pray for Piper’s complete healing and restoration.  My heart goes out to her mother Susanna.  Please pray for Piper’s whole family that their hearts would be healed.

So today, David got home and took the trash outside with our two sons.  I had dinner on the table so I didn’t let Lydia follow them.

Lydia said, “outside!”

I answered, “outside?”

She said, “outside!”

I repeated, “outside?”

She said, “I want play!”

I said, “You want to play?”

She said, “I want swing!”

I said, “You want to swing?”

She said, “I want kick ball!”

I said, “You want to kick the ball?”

She said, “I want play Lucy!”

I said, “You want to play with Lucy?”

Then I said, “Let’s eat dinner first”

OK, in retrospect, I should have let her go on out, but she was really hungry.  After dinner she was able to do all the things that her mouth and heart expressed that she wanted to do.  So whether or not she qualifies or not, I know that her speech is emerging.

Thank you God for continuing to finish the work He has started.

Please pray for Lydia’s friend Caleb.  He is in therapy with Lydia and has Cerebral Palsy.  I am praying with his family for Caleb’s complete healing.  Please join with us and pray.  Believing that one day he will walk.  If you get a chance to check out his story it is amazing.  He and his family are precious.

I wanted to let you know that all went well with the neurosurgeon on Thursday.  He said she looked great and that I shouldn’t worry about her ankle being Cerebral Palsy.  He was thrilled that her range of motion was in “normal” limits.  Next year she will have a CT Scan to check her ventricles and eventually another surgery as she grows taller.  This is a good thing.  Cousin Kim reminded me to look forward to the next round of doctors that look at the long term stuff.  She is so right!  Lydia is growing up and doing great. 

We had some time to stretch our legs while we waited to see the neurosurgeon so we went up to 4 Tower to visit the nurses.  They were stunned that this healthy little girl was RUNNING around happy and playful.  Little Lydia has come a long way baby.  It brought me so much joy to see there eyes swell with joy.  I was filled with a big ”thank you” for all they do.  On my way out, I mentioned that they could always pass my information on to any other parent with a baby going through treatment to give them hope.  Then I realized that there was a baby in a families arms standing right beside me in the hallway.  I had the pleasure of meeting Brenon and his family.  Please pray for this sweet two month old baby.  He has a mass on his liver and was going in for a bone marrow aspiration.  I hugged his mother and she held me tight.  She said that she was thankful that I had stopped by and that Lydia brought her hope.

God is amazing.  I am not sure how to give His hope, but to just be.  Living in the moment and loving Him is all I know.  Thank you for your continued prayers.

Today, was her first dermatologist visit.  Dr. Cook said it was time to get set up with a dermatologist to check out her moles and such.  The doctor checked her over real good, found some mild GVHD (Graft Verses Host Disease) in her scalp again.  I will treat it topically with Prograft.  Thankfully, no need for steroids by mouth!  She also went ahead and biopsied a suspicious red bump.  She is hoping it is just scar tissue.  I thought it was a wart on the back of her calf that she had scraped (it bled once after being scraped).  It is in God’s hands.

She had to biopsy rather deep.  She asked if I would like to schedule a time, but I asked if she could go ahead and take care of it while we were in her office.  My only hesitation was that I didn’t bring a pacifier.  I always bring one for blood draws, but I didn’t think that anything would be necessary at the dermatologist visit.  The nurse was SO kind.  She brought two in…one for Lyd and one for her baby doll.  Lydia thought that was just great.  They dulled the skin with a topical lidocaine before giving her a shot of lidocaine in her calf.  The nurse was so caring, and smart.  She wrapped Lydia up in a sheet, just like we used to when she would have a CT Scan.  They did the procedure and she screamed and I sang to her.  Finally, it was over and she sucked that pacifier and was fine.  She forgave the nurse and even blew her kisses when we left…though my heart was still pounding.

Thursday she has an appointment with her neurosurgeon for her yearly appointment.  I am praying that all is well in her head and that there will be no surprises.  She is not suppose to have a CT Scan or pictures of any kind.  He just wants to look her over and measure her head.

We are almost to her two years past Bone Marrow Transplant.  That anniversary is in May.  This year we get to stay home and have Dr. Cook do all of the yearly testing.  We return to clinic on April 28th and I have been told that she will be bled with all the viles that are needed.  Also, Dr. Cook will have a Bone Marrow Doctor come feel Lydia’s right leg.  It apparently has some tightness and some tremors when pushed to the limit in her range of motion.  Her range of motion is within normal limits.  She wants to rule out GVHD in her joints.  The neurosurgeon will be looking at her ankle too.  There is possibility that it is from nerve damage.  It could also be something as simple as being weak.  She is getting so much stronger and feels so good…and is so happy, that she still needs more strength in her legs.  She can now go up and down a flight of steps by holding just one hand.  I am so proud of her.  She is now speaking in short sentences.  Sometimes she is silent, then she surprises me with the things that come out of her mouth.

Thank you for your prayers for this sweet child.  The Holy Spirit is so amazing.  I am in awe of the Glory of the Lord.

I took Lydia to clinic on Wednesday.  Her labs looked great!  No cancer!!!  God continues to teach me to trust Him.  As time goes on, Lydia is able to do more and more.  But her body has been through so much and her immune system is still weakened she still needs to be protected.  I like to have a game plan, so after much deliberation on what would happen if she was exposed to childhood illnesses like chicken pox, I found out that she would need a 4 hour infusion of IVIG plus possible other prophylactic medication.  Good to know.  I will continue to do what we are doing.   I really don’t want my sweetheart to be put in harms way though.  I believe this May/June she will be able to get her chicken pox vaccine along with several others that she cannot get until she is two years post transplant.

Schooling the kids is a delight.  The kids anticipate with delight our daily rhythm and habits.  Who would have known that daily therapy would have been so good for getting our house in order?

I would like to ask for prayer for Carly Parker.  A tumor the size of a golf ball has appeared in the back of her head.  She has restarted chemo and will have surgery at MD Anderson on March 4.  She was originally diagnosed with her first terrible tumor in November of 2007.  Lydia and Carly were hospitalized at the same time.  My heart goes out to them as they endure and fight.