Updates

Life seems to keep us so very busy.  Lately, the busy-ness consists of managing sickness, something we have not been familiar with for a very long time.  Maggie went almost 2 years without getting a cold, but alas, we have been bitten by the cold bug several times over.  Both kids got colds Christmas Eve, and we have been fighting them ever since.  We have had a viral rash and Colin got the stomach bug along with diarrhea from an antibiotic (which caused some dehydration).  It seems like it just keeps on going...

I took Colin to a hematologist at Akron Children's a couple of weeks ago.  The test they do to determine if there is a bleeding disorder (specifically Von Willebrand disease) isn't normally given until a child is over 18 months old.  It's a test that needs to be done with the least amount of stress possible because stress on the child can alter the results.  This is a bit challenging because it's a blood test, requiring 20 mls of blood.  I don't know any children who don't cry giving blood.  It's also a test that you have to run several times because it can show false positives.  So, rather than do this test (we are to come back in 3-6 months), the doctor decided to do another CBC (to rule out leukemia AGAIN),  an epstein barr virus (mono), and an immune system test.  These tests were done because Colin had a cold/cough after 10 days and he has eczema.  I felt that we were asking for more possible "problems" by adding new blood tests.  Not only that, but I had to sit for another hour with the stress of getting another CBC and looking for leukemia.  Another hour of torture.

The tests can back with a normal CBC (no leukemia, again), normal Epstein Barr Virus, however Colin's IGG level (immunoglobulin, or antibodies which fight infection) was a little below normal.  The doctor decided to not do anything for now and have him tested in another 6 months to a year.  So, for now, we will sit and wait to have further testing until Colin is a bit older.

We went to Dayton last Monday for Maggie's clinic appointment to see Dr. French.  Her numbers all looked great, better than we've ever seen them (even given that fact that she was fighting a cold).  In two months, she will have routine tests to evaluate her heart and liver.  They will do an echo and EKG along with more extensive blood tests.  Chemotherapy can hurt these organs so they like to keep watch on them.

As we were at the appointment, I found out that Dr. French is the bleeding disorder expert in the southwest area.  How great is that?  I was able to ask Dr. French all my questions and discuss with him about the process we have gone through with Colin thus far.  It was so great talking with him.  He was able to ease my mind (after working with him for over 3 years, he has a good idea how we handle stressful situations).  Because of our previous relationship with Dr. French, we decided we will have Colin's hematology concerns transferred to Dr. French.  Though the travel is further, we feel more comfortable using Dr. French as his doctor.  Dr. French stated however, that if Colin doesn't show any further signs of a bleeding disorder, he would probably not test him for Von Willebrand's disease.  This was encouraging to me and hopefully we'll not need to look into this further.

So, that, in a nutshell is how our hem/onc issues are going.  I left Dr. French's office feeling much better and hopefully that will continue.  Now all we have to do is get rid of the "normal" viruses that are floating around our family.  I guess we always said we wanted a "normal" life and now we are getting a taste of the "normal" illnesses that most families deal with.

Thank you for your continued prayers for our family.  We greatly appreciate them as this journey veers off the road every now and again.

Photo taken 10/16/11 by Luke Lehman

Colin

Just a little update on Colin.  We took him to the pediatrician to follow up from our ER visit and the pediatrician ordered more blood tests to determine what might be causing petechiae.  It took 3 different visits and 8 pokes before the tests finally worked.  His blood kept clotting before they could get it in the test tube (which is kind of ironic because that is essentially what is wrong with him).  Finally, on Friday the test came back that his platelets (the clotting cells in your blood) are not functioning correctly.  Therefore, we have been referred to a hematologist for more testing to determine what exactly is wrong and how we will treat it.

It was a difficult 3 days of testing to get to where we are, and we will be doing more of it.  Please pray for Colin (and us) as we go through these tests and pray that it is something easily treatable.

We hope you all had a Merry Christmas and have a Happy New Year!

Deja Vu

It has been awhile since my last post and I apologize for that.  We have been in transition this past month and we are still trying to find our way.  Andy started his new job in northeast Ohio at the beginning of November and we followed him up.  My very generous maternal grandparents have opened up their home to us while they are living in Florida for the winter, so we are splitting our time between there and our house.

Last night, we experienced a moment in our lives that we hoped to never have to repeat.  For the last two months, Colin has had petechiae-like spots on the trunk of his body (petechiae are broken capillaries under the skin that look like mild pin pricks or purple or red spots.  They are commonly caused by a low platelet count, something that is often associated with leukemia).  We showed them to his pediatrician at his 12 month visit and she offered to do a CBC.  We didn't think it was a big problem at that point in time, so we declined.

During the past week, we had noticed an increased amount of spotting on his trunk.  I think any other parent might have taken it for a rash, but given our history, we recognized it as something possibly more concerning.  Andy had a peace about the situation, however, I could not get over the possibility that we might be going down the same road that we had taken with Maggie 3 1/2 years ago.  Andy insisted that we get the spots looked at in Akron at the Children's Hospital--to ease our minds and hopefully rule out leukemia.

So, last night we took Colin to the ER to get him checked out.  The hospital nurses and doctors confirmed our suspicions; the spots were petechiae and we were immediately rushed to a room to be examined.  The doctors wanted to do blood work to determine the cause.  All of a sudden, leukemia was back on the table as a possibility for our "healthy" child.  A whole rush of feelings came back to us as they prepped him for an IV and struggled to find a vein as he fought (just like Maggie).  After about 30 minutes, they were able to get their blood samples and we were told to wait an hour for the results.  During that hour, we tried to comfort Colin who was upset by the situation and we prayed desperately that our fears would be taken away.

Ultimately, the doctor came in saying "Do you want to hear the good news or the good news?"  Can I just say that a wave of relief washed over me with that question.  Colin's blood counts all looked great.  His white count was normal, which we were very relieved to hear.  His platelets were normal, so now we may have to explore further why he is getting petechiae.  But, it is not leukemia.  We later heard from our nurse that after they had drawn Colin's blood (and before the results were in) they were all praying for us.  They were concerned about Colin's presentation, as well as sympathetic to our history and emotions.

It's difficult being a parent of a child who had cancer.  We are forever traumatized by Maggie's initial diagnosis, treatment, and recovery from complications of her treatment.  I have found it very difficult to forget and the past week (and especially yesterday) we relived many of those emotions that we hoped to never have again.  I find it to be a curse to live with these memories and emotions.  When talking with our oncology nurse about Colin this week, she told me that for Colin to have leukemia would mean we have really bad luck.  I started to question that luck as we waited in the hospital last night.  I began to picture all that we had done with Maggie during her treatment and thought there is no way we could do this ever again. I was so scared, and maybe more so because we're not naive to how hard it is.

With the good news from the doctor, came such relief and joy.  Our joy is back.  Our happiness knowing we have two healthy children is here and I pray that we never have to experience the questioning of that health ever again.  We can celebrate Christmas knowing that God has shown us His faithfulness, once again. And we hope that you, too, have a healthy and blessed Christmas season.

A Big Month

A lot has happened in our household in the past month.  We have had much to celebrate, but also some sadness as well.  My Grandpa Lehman passed away a month ago today.  He was a wonderful man.  He is dearly missed, but I also know he is now with my Grandma, and I know they are enjoying life up in heaven.  We had his memorial service and burial 6 months to the day after my Grandma passed away.  They were a great model of a beautiful marriage.

This photo was taken May 22, on his 89th birthday.

We have also had much to celebrate.  October is the month of birthdays for our house.  Maggie celebrated her 4th birthday on October 8 and Colin turned 1 on October 14.  We celebrated the whole week with parties with family.  Andy and I reflected on how we weren't sure we would ever be able to celebrate Maggie's 1st birthday and here we are at number 4!  And how much more fun it gets every year.

And finally, Andy is finished!  On Colin's birthday, he took his final licensure exam and passed.  He is now a licensed psychologist.  No more studying ever again!  I am very proud of him.  Originally I thought we'd be down in Dayton for 5 years, however, I learned 3+ years ago that there is no such thing as a plan.  Andy took a year off from his school to take care of Maggie while I worked.  He spent a year commuting to Cincinnati for his internship (and dealing with Maggie in ICU for 6 weeks), and then took a post-doc at Wright State University.  He has worked hard in very difficult circumstances throughout his degree and early profession (7 years!) and for that he deserves the best.

So what is next?  Andy has taken a job in Medina with a Psychology consulting firm that works with senior citizens in nursing homes.  He will be starting as soon as the paperwork for insurances and medicare goes through (in about 1-3 weeks).  We continue to wait for our house to sell and once it does, we will be buying in the Medina/Wadsworth area.  We haven't quite figured out what our family will do in the interim, but as I learned before, making a plan and actually having it follow through are two different things.  Until he does start work, we will enjoy the sights of Dayton, as this chapter of our lives will soon be closed.

We have a lot of unknowns, but I think that has been our life story these last 3+ years.  The day that we can feel settled knowing where we will live, that our children are healthy, a paycheck is coming in, and life is peaceful will be a great day. I look forward to it.

Hallelujah

One of Maggie's favorite songs right now is, "Hallelujah" by Leonard Cohen (click here to listen).  When asked who wrote it, she said, "I know who wrote it, Shrek."  It's a quite popular song that is on many different movies, tv shows, etc.  This song's title says it all for us.  Hallelujah, Maggie is great!

Throughout the last two weeks we have had a range of emotions.  At times we have felt peace, and other times extremely terrified.  We found a red spot on Maggie's head on Sunday and the both of us about lost our supper.  With having mysterious counts a week prior and then adding to our previous experience of spots, we were worried that Maggie had definitely relapsed.  By the next morning, that red spot became a bruise.  Whew, relief...

We have tried to make sense of her counts, trying to make ourselves feel better.  Of course it was a viral response, we would say to each other.  Just think about what is going through our house and some of the different symptoms she was portraying.  After that we would feel better and then in would creep doubt once again.  Visualizing how our life would change if Maggie did indeed relapse was terrifying as well.

There were some moments of God during the last two weeks to help us through this as well.  As I sat nursing Colin, I remembered two songs that we had in our wedding.  One of them was "Deep Peace/A Gaelic Blessing" by John Rutter.  The other was "Trust" by Sixpence None the Richer.  Below are the words and links to hear the songs.  It seems a bit odd for two people to choose these songs for their wedding, since they are not traditional wedding songs.  As I reflected in the last couple weeks, I think God was telling us something about our life before we even knew what we would eventually be enduring.  It brought comfort to know that God was speaking to us almost 10 years ago at the start of our life together.  We have also experienced other songs this week with the word "trust" in them.  God was talking to us and though it was harder than ever to trust, given this situation we were in (again), we could see these moments.

The counts we received today are better than they have ever been.  Maggie's ANC (ability to fight infection) was 4300 (normal is above 1200).  Two weeks ago it was 940.  We have not seen Maggie's ANC this high since she was off treatment.  Andy told me today afterwards that he had prayed last night that God would give us counts that we would not have to question, and having a very high ANC and low percentage of lymphocytes, was quite a definitive answer.

We feel a great sense of relief and exhilaration.  When we got in the car to leave, we played one of the songs that got us through the week, "He Never Failed me Yet," by Robert Ray (see below).  A great culmination to a hard two weeks.

We want to thank you all for your continued prayers, especially the last two weeks and today.  They are what continue to get us through these difficult times.

And if I might ask for another prayer request for my family- My Grandpa Lehman has been in ICU for almost a week with encephalitis.  Please pray God's healing and peace for my Grandpa.  Please also pray for my family as we are going through another difficult experience after losing my Grandma not quite 6 months ago.

Deep Peace (A Gaelic Blessing)

Click here to listen

                                                      Deep peace of the running wave to you

Deep peace of the flowing air to you

Deep peace of the quiet earth to you

Deep peace of the shining stars to you

Deep peace of the gentle night to you

Moon and stars pour their healing light on you

Deep peace of Christ, of Christ

The light of the world to you

Deep peace of Christ to you

Trust
Click here to listen

                                                       Trust in the Lord with all your heart

Lean not on your own understanding

In all of your ways acknowledge Him

And He will make your path straight

Don't worry about tomorrow

He's got it under control

Just trust in the Lord with all of your heart

And He will carry you through

Lord, sometimes it gets so tough

To keep my eyes on You
When things are going rough

But when I turn my eyes up to the sky

And I hear Your voice it says to me

So child do not be weary with the troubles

Of this world I have overcome

Trust in the Lord with all your heart

Lean not on your own understanding

In all of your ways acknowledge Him

And He will make your path straight

Don't worry about tomorrow

He's got it under control

Just trust in the Lord with all of your heart

And He will carry you through

He will carry you through

He Never Failed Me Yet

Click here to listen

Trust and never doubt

Jesus will surely bring you out

He never failed me yet

I will sing of God's mercy

Every day every hour

He gives me power

I will sing And give thanks to Thee

For all the dangers, toils and snares

That He has brought me out

He is my God And I'll serve Him

No matter what the test

Trust and never doubt

Jesus will surely bring you out

He never failed me yet

I know God is able

To deliver in time of storm

I know that He'll keep you

Safe from all earthly harm

One day when my weary soul is at rest

I'm going home to be forever blessed

Trust and never doubt

Jesus will surely bring you out

He never failed me yet

He never failed me, He never failed me yet

He never failed me, He never failed me yet

He never failed me, He never failed me yet

He never failed me, He never failed me yet

He never failed me, He never failed me yet

He never failed me, He never failed me yet

He never failed me, He never failed me yet

Trust and never doubt

Jesus will surely bring you out

Torture

What is torture to a cancer parent?  Going to a routine blood count check only to be told that the blood counts are not perfect and to come back in two weeks to get them checked again.  Waiting.  That is torture.

Maggie went in for her routine check up (we are now going every 2 months).  Her blood counts came back with a low ANC (ability to fight infection) of 940.  Her lymphocytes were high at 80% (normal cut off is 74%). Dr. French ended up writing in her chart a viral suppression (meaning her ANC is being suppressed due to a virus).  We do have a virus running through our house.  Colin is fighting his first cold and while Maggie does not have a runny or stuffed nose, sore throat, or cough, last week her voice sounded a bit nasally.  We are hoping and praying that this virus has indeed affected Maggie's counts and it is not the other (cancer).

I spoke with my hem/onc nurse who normally calms me down during moments like these.  While she did affirm what Dr. French said as a likely virus response, she said "she doesn't have a crystal ball" and does not know for sure what it might be.  For some reason, this time around, while she didn't say anything too scary, it just wasn't as comforting as it should have been.  She also said it is standard protocol to have counts redrawn if the ANC is below 1000.

So, we wait until September 23 to see what Maggie's counts will do.  We pray that they recover and that she continues to prove to us that she is cancer free.  If you would please pray for Maggie that she is indeed healed of cancer and for peace of mind for us.

Thanks to A Kid Again, we were able to attend a Dayton Dragons game.  The photos are from the game.

Maggie's First Haircut

After 3 years and 10 months, we decided it was time to cut Maggie's hair.  Her hair had multiple layers in it from the starts of growth from her treatment.  We didn't go crazy with her hair, but only cut the bottom layer (this layer started growing after her intense treatment and never fell out again).  It was a bit bittersweet to see it go, but in cutting her hair, a part of us feels like we are saying, "See cancer, we can and have moved on!"

Maggie was not too excited about getting her hair cut until I showed her a video and she saw that the little girl got to ride in a car and get a balloon.  The balloon sold it.  She was afraid though that the scissors would hurt, but as she was leaving the salon, she said, "It didn't hurt after all."  She was quite excited to have her hair cut and ended up calling several people to tell them and show them on skype.  It was a first of many!

She chose the pink car, but next time she wants the pink
airplane.

The length before the cut.

The length after the cut.  This is also Maggie's
favorite picture because it shows The
Berenstain Bears that she was watching.

The after shot.