Thanksgiving will mark the second anniversary of Lydia’s diagnosis of leukemia.  I am so thankful that she is alive and well!  Last week was filled with many strange and heart pounding physical issues of close friends and loved ones.  I took each one to heart.  Looking back on last week, it was like I was having flashbacks of Lydia’s diagnosis.  A friend of mines grand-baby had a scare of possibly being diagnosed with leukemia.  I met the family down at Children’s  and was relieved to find out that the baby did not have cancer, instead his body had responded to a run of the mill virus, by depleting most of its platelets.  The baby was given IVIG, an infusion that Lydia has had many, many times.  The baby responded very well to the treatment, but developed aseptic meningitis.  He is doing very well now thankfully.   I am so thankful that he doesn’t have cancer or any long term health issues from his trip to clinic 8.

By mourning with those around me mourning, I have cried all the tears that mourning the anniversary stirs up within me.  I am relieved to have that out of the way so I can REJOICE in the season of Thanksgiving.

This week has been quite busy.  I should report that I took Lydia to Vanderbilt for her ophthalmology appointment.  It doesn’t look like she is responding to her glasses at all.  In fact she now has a vertical eye crossing as well.  She is still able to focus with each eye independently,  so there is no rush to get her to surgery.  She will be reevaluated in four months to see what the new crossing is doing.  He wants her eyes to be stable, before moving to another surgery that would just have to be corrected immediately.  I like this in a surgeon.

I got to visit with my dad while we were in Nashville.  When we went out to dinner, we sat in a booth.  Lydia sat like a big girl close to the wall, so no one would touch her.  I had to dodge the friendly advances of several waiters wanting to coo over her.  When she was finished with her all time favorite, guacamole, she stood up in her seat and continued to jump!  I was so excited.  My father was confused until I told him that she had been working on jumping on a trampoline during physical therapy and didn’t show any interest or ability.  Now she does.  I think most moms would be upset that their child was jumping on furniture, but I was thrilled.  She is certainly continuing to move forward!

I also wanted to give you an update on our Christmas Smiles project.  So far I have collected $300.  I would like to collect a lot more so that we have enough to give gas gift cards again this year along with toys for the children.  It is so depressing to be hospitalized anytime, much less on Christmas.  With God’s help, I hope to share His hope and joy to His beloved.  Thank you for your prayers and support as we draw closer to Christmas.

Well we have been truly living.  It is surreal all that we have experienced over the past couple of months.  This past weekend alone we attended Disney on Ice, thanks to Camp Smile a Mile, had a yard sale, and attended an outdoor art show!  I put a call in to our oncologist to double/triple check that Lydia could indeed visit such an arena.  I was told to let that child enjoy the show!  Can you imagine?  The kids did just that.  Huey noticed “all” the children in the audience had toys.  Dewey sang along with all the songs, even the ones he had never heard before.  Louie (Lydia) danced to almost all of the acts.  It was GREAT!  It was also great to be in the audience with other oncology patients.  Baby Xavian’s family was nearby.  Xavian couldn’t attend, because of treatment, but his big brother Dante got to enjoy the show.  I kept thinking about how bizarre yet good it was for me to get out with other transplant families when Lydia was in the heart of transplant.  It was hard to enjoy myself, but also a time to relax even for just a moment.  Xavian has just completed all of his rounds of chemo and will have an MRI in December.  We are praying that his brain tumor will be gone forever!

At our yard sale we collected nearly $200 for Christmas gifts for hospitalized oncology patients at Birmingham Children’s Hospital.  Many people have asked me how to be apart of this seasons giving.  You can donate brand new items for children ages infant to 18.  Last year, gas gift cards were the most appreciated by the patients parents and DVD’s went over very well with the kids.  Coming up with presents for the teenagers was the most difficult.  Remember no hair accessories, due to treatment, and the children range in all different ethnicities.  If you would like to donate monetarily, a tax deductible donation is possible.   There are a total of 19 rooms on 4 Tower and 8 rooms on the transplant floor.  I am hoping that this year I can offer presents to both floors.  Once again thank you all for your love and prayers.  God has used you in a mighty way.

I was able to get to church for the third Sunday in about a month.  Our pastor opened up a group discussion about what does being sent out to share the gospel in the 21st century look like.  There has been a bit of email discussion that I put my experiences into.  I figured I would post my email reply as a post.

On Sunday, I was thinking how credibility can be found in our testimony.  I mean, when God pulls us out of a pit it speaks volumes.  God uses our story no matter how ugly, tragic, and/or typical they might be.

When I take the kids to the playground, I almost always tell our story to the other moms standing around.  Not for any other reason than giving the hope of Christ.  It is the story of our lives and I have to share it.

From another perspective, when the body of Christ showed up at the hospital nearly two years ago in servanthood…it spoke VOLUMES.  Every nurse, doctor, and other patient saw the body as the church is described in the Bible.  They saw something different than normal.  It truly was the Holy Spirit at work.  By the way, I want thank you again for the love of the church.

Another place God put me to share the gospel is at Children’s hospital.  It is in a different way than I ever saw evangelism before: It is through loving words of compassion and hope and praying with parents for their children.

When Lyd was in the PICU when she was first diagnosed.  A person tried to evangelize to me and tell me that my child would be healed if I had strong enough faith.  That ALWAYS upset me.  Like my faith controlled God.  My faith was in God alone whether he took my daughter or allowed her to live.  I always thought how hearing something like that by someone with weak faith, might tear them further from God.  Who knows.  I don’t have the answers, just more question.

Liz

Please be in prayer for the Pierce family.  Their precious son Bennie passed away yesterday after a 2 year fight with cancer.  He was 13.  He and Lydia were diagnosed around the same time.  His family is celebrating his life on earth and in heaven.  If you would like to leave them a message of love and encouragement please sign their guestbook on their website.  My heart is heavy for their loss.

With the brisk air of fall comes many new adventures.  Yesterday, our extended family visited a pumpkin patch.   It was about an hour away and well worth the trip.  When we first arrived the parking lot already had a few school buses in it.  I gulped and continued with our adventure.  It is all outside and I would make sure no one touched Lydia.  I relaxed and decided to have a good time.  My  kids did the same.  They were overjoyed being passengers of a large covered wagon being towed by a massive tractor.   Huey, Dewey and Louie all wore costumes.  Huey was superman, Dewey dressed up like daddy and Louie (Lydia) was a pirate baby.  We ran into many folks we know including one of Lydia’s oncology nurses.  It was so good seeing her out of the context of the hospital.

By the end of the day Lydia had a slight runny nose.  I hope it is just from the change in weather.  She was quite fun and her quirky self this morning.  David took us all to a state park for more outdoor time.  Getting that cold air in the lungs and all.  There were very few people there.  I felt much better about today’s venue.  The funny thing is that we still ran into folks we know.

Lydia is getting more confident in her running around.  She has just begun doing a dance that looks like a trot…or someone who has a limp.  One or the other.  Anyway, she does it with confidence and a huge smile on her face.

The volume level of my three preschoolers can be quite ear piercing.  I have thought about having a sign language only policy at the table while we eat  My ears would get a rest AND it’s educational!  I can dream can’t I?

Thanks for your continued prayers and love.  Please keep those battling in your prayers.  I want to encourage you that praying and supporting them doesn’t have to be overwhelming.  Just love them.  That love may take many forms of support for them, but love them all the same.  God is love.  I have seen his love in all of you.  Thank you.

Lydia’s glasses are in and she is loving every minute of them.  She is quite a girly-girl.  She can often be spotted in her purple glasses, cape, stethoscope, hat, necklaces, and/or bracelets.  She has gotten to the point of wanting to be outside with brothers EVERY time they go.  It has been quite exhausting (in a good normal way) trying to keep her skin covered from the sun.  The sun can still cause Graft Verses Host Disease to flare up and because of the HUGE amounts of Total Body Irradiation that she received, she is at higher risk to get skin cancer from the sun.

I have gotten a lot more laid back in daily life.  It is GREAT.  My kids are happy, healthy, and quite entertaining.  While studying the alphabet, my 4-year-old let me know that “D is for Delimber” .  A delimber is a truck that de-limbs trees.  He learned that from the DVD “Truck Tunes”.  If you have kids that dig construction trucks, you should check it out.  Our local library carries it.  Though it is most often found checked out by us. We returned from a short trip to moms this past week and my sons immediately asked to do school work.  The funny thing was it was Saturday.  I was excited so we jumped right in.  Everyone likes the routines that we have in place.

David and I had the opportunity to go to church this morning.  I was a nervous wreck…being around so many people.  I wore a name tag that reads “I love you, but I can’t hug you”.  My friend, Dan, made it for me when I attended my grandmother’s funeral last May.  I really want to hug all these loved ones that have supported us in every aspect of helping you can imagine.  When I walked in the building, I was so overcome with nerves.  I wanted to get seated so no one would notice we were there.  I think the oncology team has done a great job of turning me into a germaphobe.  There is a poster at clinic of a HUGE hand with magnified bacteria and viruses on the skin.  The poster says wash after every contact.  I have taken that very seriously.

Anyway, we were at church and we were invited to communion.  I had the hardest time getting over my germ issues.  Then we sang “It is Well with My Soul”.  It is a beautiful hymn describing the authors trust in God after a fatal event.  You can read about it here. Singing that beautiful song, I was able to give my anxiety back to God.

There are a lot of kids and families in need of prayer:

• Ja’Colby will be having a bone marrow transplant next week.  He is an infant with AML leukemia right here in town.
• Bennie Pierce was sent home with the news of there is nothing more we can do…well Bennie and his family have not given up hope and he is doing much better than expected.  So much better, that he is planning on returning to Birmingham for an MRI and reevaluate the prognosis.
• Taylor Hendrix found two spots on her lungs.  She and her family were given this news unexpectedly.  They will go back to MD Anderson November 11 to see if the size of the spots have changed.  At that point they will have a new course of action.
• Carolyn has a scheduled MRI.  Please pray for her anxiety and to continue to be cancer free.
• Lydia has an upcoming check up and counts checked.

Finally some pictures, right?  Well, Lydia was the poster child for The Leukemia Cup Regatta held at the Birmingham Sail Club last weekend.  The Leukemia Cup raises money for the Leukemia & Lymphoma Society.  Lydia’s paternal grandparents race Thistle sailboats and have been advocates for raising funds to help research and find cures against blood cancers for future generations.

Her glasses have not come in yet.  Hopefully we will get them next week.

I have more to report from our trip to Nashville last weekend.  We had a chance to visit my dad’s new home while we were there.  My dad and stepmom moved back to Tennessee after an eighteen year hiatus living in the North-east.  I am so glad to have them so much closer…over the Labor Day holiday, our friend Trevor got a fever while on vacation.  He landed five days in an unfamiliar hospital.  He is doing well now, but this scenario has made me even more thankful for the close distance of my family.

Our trip visiting was so much fun.  The kids couldn’t get enough of his horses.  Yes, he has 4 miniature horses.  They are adorable.  They were great with my group of preschoolers.  My sons said that they were real cowboys now.  I don’t know which they enjoyed more: feeding them or brushing them.  I didn’t let Lydia pet them this trip, but hopefully as her immune system progresses she will be able to partake.

We cut our trip short, because illness had hit the household.  Thankfully, we were not exposed to it.  On our drive home, I saw flashing lights on a sign that said “travel advisory, tune radio to 1680AM”.  When we drove through the day before, I had noticed all of the interstate construction, so I already knew what it was going to say.  Why should I turn the radio on?  So I tried to ignored it.  I kept thinking “do I really want to stop the kids CD”.  Until…I saw another flashing sign “travel advisory, tune radio to 1680AM”.  This time I turned on the radio.  I was glad that I did too, apparently the interstate was closed ahead, just for that day.

I thought about my stubborn nature.  How many times have I asked God to light the path in front of me and completely ignored it because I thought I knew better already.  Interesting.  Very interesting.  I’m praying that I will be less bull-headed and more obedient.

I ordered Lydia’s glasses yesterday.  I went with fun and funky instead of durable.  The glasses do have a year warranty, so everytime they break I can have them replaced.  Hopefully, the warranty won’t be needed.  I will get the glasses back next week.  I am the world’s worse about posting pictures, but I will post a glasses pic when they come in.

Some people become speechless when they are faced with someone whom they have a crush on.  Others lose the ability to speak when meeting a celebrity.  For me, it takes the Amish or Mennonite to stand fully awed and amazed.  Seriously.

On our drive to Vanderbilt yesterday, when we stopped  and I saw a Mennonite couple.  I had to approach them, but what would I say?  I stumbled and stuttered.  It probably took a full minute or two to get a clear sentence out of my mouth.  David finds it fascinating that I will approach a complete stranger, tell them my life story, and get to know them as well.  Anyway, this is what happened.  I told them about Lydia and her upcoming possible surgery (which was cancelled!!!).  I asked them to pray for her and the rest of us.

So why do I think of these groups of people as rock stars?  Well, I guess it is because they have stripped their lives down to the bare minimum, ridding things that distract from God Himself.  How amazing is that!  It seems like the holiest example this side of heaven.  No matter what I think of the theology, I certainly respect them.

For groups of people who could come across judgmental, this couple certainly was nott.  They loved on us even though we are anything BUT plain folk.  It was a great experience for me.

God continues to answer your prayers.  Keep talking to Him, He’s listening!  I took Lydia to Vanderbilt today for her pre-op appointment and our surgeon decided to cancel/postpone surgery!  This is due to the fact that she is not crossing her eyes when she is focusing on distance like she was three months ago!  She is still crossing them when she focuses on objects up close.  It needs to be corrected for her to continue to develop so wonderfully.

So, we are going to try glasses.  I know, I know… glasses on a two year old.  How do you keep them on and not break them?  Many of you have had babes in glasses.  I would love all the advice you have to offer.

Basically, our ophthalmologist explained, as children with neurological issues develop and progress, their eyes typically adjust away from each other.  This goes along with Lydia’s working better together at a distance.  Doc wants us to see if this is what is naturally taking place before operating.  If he went ahead and operated forcing the eyes to not cross and be lined up well, and then they naturally progressed further apart, that would mean more surgery in a short period of time.

So we are going to try bifocals.  Every time her eyes start to shoot downward and together, she will be looking through the bifocals, so hopefully she will work hard and pull her eye up and into position, looking straight ahead.  He said it was a long shot, but possible.  I KNOW all things are possible for my God.  We are scheduled to reexamine her eyes in November and decide to schedule a surgery at that point if the glasses are showing any progress.  Also, if I notice any crossing while she is looking at things at a distance, I am to call immediately and schedule the surgery.

Time will tell.  Until then, I am thrilled that surgery is no longer in the near future.

Thank you all for your continued prayers, love and support.