Hurricane Eye

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.

 

New Beginnings

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!

 

Baby It’s Cold Outside

As the cold wind swept through the air recently, so did colds in our house.  Thankfully, Lydia never ran a fever and she was able to fight it on her own!  While she was icky, our oncologist wanted our pediatrician to check out her cough and make sure her lungs were clear.  Did you catch that?  I got to take Lydia to the PEDIATRICIAN!  That’s where typical kids get to go!!!

As I was getting us ready, I realized that I was taking Lydia to see Dr. Simpson the Monday after Thanksgiving.  All of a sudden I freak out, because that was when it all began two years ago in his examination room.  Sally calmed me down and said, “Liz, this time he is going to find a healthy little girl with a cold”.  And he did.

God has been so good to our family…to show Himself in a real way…to give us a great team of doctors, nurses, and medical staff that rely on God to take care of my baby…to give us loving people to take care of all of our needs…to allow my daughter to live.  I am so blessed.  You all are a blessing to me.

 

Reason to Smile

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.

 

Life, Life, and More Life

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.

 

Sunday’s Discussion

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

 

Bennie

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.

 

What a Weekend

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.

 

Super Girly Girl

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.

 

Pictures Anyone?

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.