Pride and Prejudice has to be my favorite story.  Once David and I were married and under the same roof, he was a trooper and painfully watched all three movie versions of this epic story three Friday nights in a row with me.  Hey, he is my Mr. Darcy.

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.

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I feel I need to share the latest with Lydia’s physical recovery.  I took her to be evaluated at the elementary school that we are zoned for last Friday and this past Monday.  The public school takes over therapy where Early Intervention leaves off when children turn 3.  I was interviewed as well to give the therapists a bigger window than what they see during the test.  I was asked how many word’s she can say…I answered 20-25.  When my family got wind of that, I was mocked…more like 200 is what I was notified.  The problem is that Lyd can be so quiet much of the day, so I didn’t even recognize the improvement of her vocabulary over the past few months to share with the team.  This being said she scored a 75 at the evaluation.  She has to score under 77 in two areas to qualify for services.  The other score that I saw was a 95!  I haven’t gotten the numbers back for the other three tests, but the preschool teacher did not expect her to qualify since she was being tested in the 4 and 5 year old categories.

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.

The night before the big neurosurgeon appointment, I was awakened over and over with bad dreams.  I was eaten up with fear.  Fear that I KNOW was not from God.  I got so scared of relapse.  Losing my precious one.  David was awesome and prayed that God was in control everyday no matter what.  I was able to find rest and peace in God’s abundant gift for our lives.  I am so thankful for my three children.  They are all God’s.  What a blessing that He has entrusted them to me.

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.

Spring break was great between our busy month of appointments.  We had the opportunity to go down to mom’s in Florida and let the kids have a play date with some friends of mine from my college days and their son.  Then we went up to Vanderbilt for Lydia’s eye appointment.  She had broken her glasses a few weeks before and I had not gotten them fixed before the appointment.  I wanted to see what Dr. Donahue said before I put anymore time and money into them.  The nurse taped Lyd’s glasses up for the exam and thankfully, they straightened her eyes out!  I was so thrilled, I told him I wanted to pinch him!  So now new glasses have been ordered and I can’t wait to get them.

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 have recently found the book “Snuggle Puppy” by Sandra Boynton.  I have friends that have it in their child’s book collection, but I had never picked it up, let alone read it.  It is a small board book.  You know the kind, made for babies.  I found it laying on a chair in library near the kids computers and it screamed pick me up.  When I did, I found it filled with the most beautiful affirming life giving words for a child.  The sentiment is real and expressed loudly…like our family.  I ordered our own copy of it from Paper Back Swap.  Even my 4 year old LOVES it when I read him this tiny jewel of a book.  What a treasure.

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.

I have been at a loss for words for quite sometime.  I know, right?…me without words.  Without crisis in our midst I haven’t known what to write about, so I will begin with the reason for my latest hiatus:  After the kids are tucked soundly in their beds I have been completely addicted to paperbackswap.com and trading books like crazy.  I like to keep books, but after my friend Allison told me about this website, I have started replacing some of my dust collectors with books that are part of the kids curriculum.  All for the price of stamps.  A little known fact is that I collected stamps for about two years after college.  They aren’t worth more than face value, but it is very helpful for this new found resource.  It has even given me the excuse to read some of the books that I hadn’t noticed much in years.  One book, in particular, was given to me by my dad.  It is called, How to Make a Journal of Your Life by D. Price.  I read a couple of pages and was yet again inspired to keep on writing.  Beth’s comment last month didn’t hurt either.  Thank you all for your amazing support even now.  Your encouragement continues to strengthen my spirit.

My gal has moved up to the big kid class for her therapy.  She is now going 4 days a week in the afternoons.  It is working out great.  She even takes a dance class once a week as part of her therapy.  She just loves it.  Our morning are getting much smoother, because we can have a regular routine. Get ready for the day, then off to the kitchen table for school.  After school, we head to the sofa for story time.  I am really enjoying preschool, because it is filled with ooey-gooey dough, colorful paints, markers, etc.  All the art products that make my heart flutter.  The kids are able to be expressive and try new things.  I don’t have them do “pretty work”.  Don’t get me wrong, I really like the pretty keepers, but right now I am wanting them to enjoy the process of creating…without making an overwhelmingly big mess.

Naps seem to be the thing of the past for my guys.  My only beef is that they are so tired (and cranky) by dinnertime that we are all just trying to stay sane.  I have just listened to the audio book Scream Free Parenting by Hal Runkel.  This book has been so helpful for me in my relationships in general.  The biggest thing that I took to heart was making a decision to take care of myself in order to take care of the ones that I love.  I felt that I was being selfish if I took any time for myself.  But now David and I have started going to a Bible study again after our two year hiatus.  It feels good.

A lady from my church, Kelly, was hit by a drunk driver while riding her bicycle, while on vacation a week ago.  She had a lot of brain trauma and was in a medically induced coma.  She had two neurosurgeries, was on the ventilator, feeding tube, and had fevers.  No one knew if she was going to pull through, but she did!  Her battle is far from over, but she is now awake, breathing and eating on her own, and back in her hometown.  She still has a hard time recognizing folks.  I went to visit her when she was still in a coma and was overtaken by the peace in her hospital room.  I was so glad to witness God’s vast presence there.  Paul Simon sings a song called “Hurricane Eye”.  I  like the lyric “peaceful as a hurricane eye”.  In the midst of disaster, peace can be found in God.  I think it is like that in all of life.  I can get caught up in life around me and it feels like a tornado, but when I finally turn to God I can find peace…right in the middle of it all.

This Christmas was fabulous!  We traveled a bit to visit family, because we could! We had four family Christmas parties plus I had the pleasure of going to the hospital to deliver the “Christmas Smiles” project.

What a delight it was to be able to surprise the hospitalized hem/onc families with Christmas presents on Christmas Eve!  All 19 rooms were not filled, so we had enough gift bags for all of the patients and their siblings.  The parents were surprised with their gift cards too!  I included a note telling Lydia’s story.  Thanks to all who supported this mission of love and hope.

By the way, you may have noticed a bizarre picture in your Christmas card this year.  I got our pictures printed on line at SeeHere.com.  That’s fuji film’s website.  I used a special promotion and had all of our pictures printed for the cost of shipping!  The pictures looked great when they arrived, but I didn’t pay attention to the small Christmas cards that they were suppose to fit in.  Oops.  So, I cut the 4×6 collaged photograph in the only spot that made since to cut.  But, the collage no longer made much sense.  AND some of the cards got parts and pieces of the collage.  I can only imagine what many of you thought when you got a slice of a picture of our family jumping down from a family photo with Lydia underneath it with food on her grin.  Too crazy, but I don’t do too much that isn’t a little kooky!

So, Lydia is doing great!  We are trying to re-enter life a little more.  This is a big step for our family.  I am quite nervous, but trying to resist the temptation to stay in my self made bubble.  Lydia goes to a group therapy class that now has six other kids in it!  Um, I am sitting in the lobby as I write this and trying not to run in a get her away from all of the other kids.  I think it is great for all of us to have these new experiences.  Please pray for her to stay safe from germs that could make her so sick.

As far as prayers go please pray for baby Colby.  He has infant leukemia and was transplanted a couple of months ago.  He has relapsed.  I am not sure what the plan of action is to try to get him into remission again.  Please pray for him and his family.

Also, my friend Julie was in Atlanta visiting while she went into labor…at 27 weeks of pregnancy.  She is now hospitalized there away from her husband and kids.  They travel to visit and her husband has been able to stay for a week at a time, but it is so hard being away from family.  She and the baby are both stable.  Baby boy is growing.  She is hospitalized and on bed rest for as long as she is able.

Taylor Hendrix began chemotherapy today.  She learned at her lung biopsy that one of the spots that was thought to be a granule since her original diagnosis in 2006 was actually a tumor.  It has been removed, but now some experimental chemo will be used.

Kelli Ritter is coming to her third anniversary since diagnosis of CML leukemia and 13th birthday.  I had the pleasure of becoming friends with her mom Josie after meeting her on an elevator in Seattle.  I was bawling and she said “Bone Marrow Transplant?”  Kelli was visiting after her one year anniversary of transplant.  I am so glad that God gave me this strong family to lead the way for me to be able to ask questions.  Kelli has had a tough time with Graft verses Host Disease but has shown great response to the therapy she has received for it.

Please pray for these families as you are led.  I really want to update more often, but am at a loss for what I should write about.  I enjoy writing so much and am not ready to stop.  We will see what the future leads too.

Happy 2010!