vibrant life

more photos...

You may remember that my lovely friend Terri recently did some photos for our family (you can see them here).  She got some really great shots of Meghan and we are thrilled to have such beautiful photos to document this time in Meghan's (and our) life.  She also just sent me some additional photos that I love...





You'll have to stay tuned for one of my favorites from the shoot - it's a very special (and secret) family shot that we'll be using for a special project coming up! 

new news...

I realized today that it has been over 3 weeks since I've updated here!  So for those of you still checking in... I apologize!  I suppose you could just assume that no news = good news.  We are just plugging along with life and still all adjusting to the changes of Meghan's treatment slowing down and Mom being back at work and kids all being in school.  It is interesting how even just small things - like planning meals and cooking every night - are an adjustment after having a year that was so sporadic in that department.  Don't get me wrong - it's all very good - just taking time to re-acclimate!

Meghan's hair continues to grow - what a joy it has been to see (and rub) it!  (And boy, do people want to rub it!  It seems to possess the same kind of magnetic power as a pregnant woman's belly!)

Aidan decided that Meghan needed some company for this photo (do you see Yoda on her shoulder?)
  
Speaking of Aidan, he recently enjoyed a field trip to the apple orchard...
  

Yesterday and today (Monday and Tuesday) the kids had off from school.  Other than Meghan's physical therapy appointment yesterday afternoon, they are thoroughly enjoying just hanging out at home together and playing all sorts of goofy games.  I have also enjoyed a couple of running-around-free days as well.  Although it has really hit me how very exhausted I feel.  When things are busy you just keep pushing through it because you don't really have a choice.  But watch out when things slow down - it really hits you like a ton of bricks.  I am just physically, emotionally, and spiritually exhausted.  It seems somehow ironic or strange to me that I'm feeling that way now when based on circumstances I should be feeling refreshed and energized and ready to move forward.  (Or maybe I'm just expecting too much too soon??)  Anyway, all these new choices in life seem a little overwhelming to me at the moment.  I'd feel better if I just could at least feel like I'd "caught up" on everything from the last 10 months. 
I know - patience, peserverance, and prayer!  There are always lessons needing to be learned aren't there? 

Just a few random things to mention:

• For those of you following (and praying for) Ethan McGraw's family, his mother Jennifer has started a new blog you may be interested in.  You can find it here.
• We finally heard back from Make-A-Wish.  I won't bore you with all the details but they are unable to do the backyard make-over in the way that Meghan had imagined so Meghan has decided to go with her second choice - a trip to Disney.  So seriously - who's going to complain about that?  We are all very excited!
• Rileigh is in the process of allergy testing.  Please pray that we get some good answers and a course of treatment when we meet with the specialist on December 4.
• Meghan's physical therapist (knowing of Meghan's desire to hopefully play on the volleyball team in January) arranged for her to practice with the GRCC Women's Volleyball Team recently.  She had a great time!  Thanks Beth!
• We had our first snowfall here in Michigan (thankfully it has already melted!).
• Michael and I have our 20th Highschool Class Reunion later this month.  As I recently posted on Facebook, I am somewhat horrified by the sad realization that there is no way I'm going to lose 100 pounds before the reunion in 3 weeks, lol!

it's coming...

Look at all that peach-fuzzy goodness!  And her eyebrows and eyelashes are coming in too!

There is not much new to report around here.  I have been back at work for two weeks now and life is continuing on.  Meghan is working hard in physical therapy and hoping to be ready to play volleyball in January.  Overall she is feeling pretty good.  She still tires out more easily and this is a challenge for her because she wants so badly to be totally "back to normal" and tends to overdue it a little.  All the kids are doing great in school and enjoying it.  Rileigh and Aidan just finished up the fall soccer season with their last games on Saturday.

  

Aidan especially enjoyed the fact that his best bud, Noah, played on the same team with him.  And other than one small mishap...

... the season was great.  (This is the day after Aidan fell off of the bleachers after practice.  He was covered in mud and blood and cried the whole way home.  After a shower and some tenderlovin' care, he was fine.  Daddy convinced him that he looked cool "like Batman after he fights the bad guys and gets all scraped up.")  We are very thankful because it could have been much worse - he fell off the top bleacher (6 ft. maybe) and landed on his head so these minor scrapes and bruises are not bad! 

**************************************************************************

I know I have not been very good about updating here regularly (not much to update!) but I really appreciate all of you who continue to check in with us and continue to pray for our family.  Your support, encouragement, and prayers have been a blessing beyond compare this last year and we are so very thankful for all of you!  Meghan will be back in clinic in November, back to the surgeon in December, and next round of scans in December/January.  Please pray that the scans continue to be clear and that her body remains free of cancer.  More importantly, please pray for all of us to continue to put our hope and trust in the Lord and cherish each day that He blesses us with!

God Leads His Dear Children Along

In shady, green pastures, so rich and so sweet, God leads His dear children along;
Where the water's cool flow bathes the weary one's feet, God leads His dear children along.

Some through the waters, some through the flood, some through the fire, but all through the blood.
Some through great sorrow, but God gives a song, in the night season and all the day long.

Sometimes on the mount where the sun shines so bright, God leads His dear children along;
Sometimes in the valley, in darkest of night, God leads His dear children along.

Though sorrow befall us and evils oppose, God leads His dear children along;
Through grace we can conquer, defeat all our foes, God leads His dear children along.

Some through the waters, some through the flood, some through the fire, but all through the blood.

We can testify to the truth of these beautiful words. 
May the Lord find us faithful in the continuing journey!

life on the "other side"...

Well, that title may be a bit premature still, but there are many adjustments taking place in the Haan household as things start to "normalize" (what a funny term - I mean, really, what is normal?  It's all relative).  We are keeping very busy with school and homework and soccer (Rileigh and Aidan) and physical therapy appointments and all the basics of life.  Meghan was able to have some good friends from school over this past Friday night for a sleepover to celebrate her birthday.  FYI - 7th grade girls are very noisy and goofy! :) They had a great time eating pizza, rootbeer floats, lots of candy, playing games, watching movies, giving each other (temporary) tatoos, playing hide-n-go-seek tag in the dark, and not really sleeping (why are they even called sleepovers when no one sleeps??).  Despite the lack of sleep for mom and dad as well, it was such a blessing to see her just hanging out and having fun with her girlfriends.

   

   
Saturday night Aidan finally got to have his best buddy, Noah, sleep over (they have been asking for several months).  I got such a kick out of them constantly saying to each other, "this is totally like the best sleepover EVER!"  (Next will be Rileigh's turn.) 

Sunday noon we celebrated Meghan's birthday along with my brother-in-law and niece and nephew's birthdays at my parent's house and Sunday night we had Michael's family over for more celebrating.  (All that fun is really pretty exhausting!)

Meghan requested a "chocolatey" cake so I made her a Triple Chocolate Fudge cake with Triple Chocolate Fudge Chip frosting and I lined the sides with chocolate filled piroulene cookies! 

Other news to report over here is that Rileigh has started learning the recorder in her 4th grade music class.  I do not understand in all these years of kids playing the recorder how someone has not yet figured out how to make a recorder that doesn't have that terrible annoying squeaky sound.  I have spent the afternoon and evening hearing "hot cross buns" in all its squeaky glory.  I would not be exaggerating to tell you that I've heard it at least 150 times!

I will be going back to work starting tomorrow (I have not worked since last December).  And while I am very grateful to have a job to go back to, I have to honestly say that I am not feeling prepared at all.  I had hoped to have a little breathing room and time to get caught up with a lot of the things that have fallen by the wayside while Meghan was in treatment.  But life keeps moving and bills keep piling up and I just need to be grateful (especially in this economy) that I can work and contribute in some small way.  Please pray for our family as we start to pick up all the pieces of life, especially financially.  I will not be working as many hours as I did before (budget restrictions) and Michael is seriously considering trying to pick up a part-time job in addition to his full-time one.  Things will be very tight for quite awhile (as it is for many, many of you out there).  We are so thankful for God's provision for us these last 10 months and we trust that He will continue to provide all that we need.  Please pray that we can adjust and be good stewards of whatever the Lord blesses us with.

official...

We met with Meghan's primary oncologist today to review the results from her recent scans.  We have received the official word that Meghan is in REMISSION!  The scans came back clear and her oncologist is very optimistic and pleased with the results.  The terminology is a little tricky - they will not say she is cured or even cancer-free - just that there is no evidence of cancer in her body at this time which is referred to as remission.  Recurrence is most likely to occur within the first two years so Meghan will be monitored very closely.  Meghan will be able to decrease some of her meds (not all, but some) and we will start on a new schedule of going to clinic every 6 weeks instead of once or twice a week!  Although her counts continue to rise, her immune system is still compromised as the chemo can take up to 6 months to fully work its way out of her body and as the body works to repair and recover.  For the first year Meghan will have a chest CT and plain film xray every 3  months and will alternate between PET-CT and full-body bone scans every 3 months.  After the first year, scans will be performed every 4 months and after the second year, every 6 months.  She will be scheduled for the surgery to remove her port after her next set of scans in 3 months.  We will continue with physical therapy 2 times a week as well.  I'm thinking we will need a little bit of time to let this all sink in (although Meghan doesn't seem to need any time - she is ready to move forward and not look back!)  Please join us in praising and thanking God for this great news today!

O God Beyond All Praising (Trinity Hymnal #660)

O God beyond all praising, we worship you today
and sing the love amazing that songs cannot repay;
for we can only wonder at every gift you send,
at blessings without number and mercies without end:
we lift our hearts before you and wait upon your word,
we honor and adore you, our great and mighty Lord.

Then hear, O gracious Savior, accept the love we bring,
that we who know your favor may serve you as our King;
and whether our tomorrows be filled with good or ill,
we'll triumph through our sorrows and rise to bless you still:
to marvel at your beauty and glory in your ways,
and make a joyful duty our sacrifice of praise.

meghan's amazing weight loss program...

Still going through old photos and found evidence of an amazing weight loss program that Meghan developed when she was younger.  These photos of her first victim patient are evidence of the success of her program.

Before:                                              After:       
   

I think I need to talk with
Dr. Meghan and see if she
still remembers her secret
formula.  Personally, I've
got the before picture all
taken care of; I just need
some help with the after
picture! :)

birthday girl...

Today (Wednesday, October 1) is Miss Meghan's 12th Birthday!  I've been trying to sort through some old photos and I came across some great ones of Meghan. 

 
1)  Michael and Meghan on her first birthday              2)  Meghan's 6th birthday (hula theme)

   
1)  Big sister for the first time (baby Rileigh)              2)  Fall time sisters

 
1)  Big sister for the second time (baby Aidan)           2)  Spring time siblings

 
1)  Matching cutie-pies                                             2)  Rough-n-tumble soccer girl

It's hard to believe this little girl is already 12...

Happy 12th Birthday to my brave and beautiful daughter!  We love you beyond anything words can
express Meghan and today (as every day) we give thanks and praise for you!

lovely...

My dear friend (and photographer extraordinaire!) Terri recently spent an afternoon with us to capture
and document this time in our lives with Meghan.  I am beyond thrilled with the results! 

                            Please click here and check them out! 

search me, O God...

First off, a short update on Meghan...
The last couple weeks we have been continuing with physical therapy appointments and clinic and Meghan has been attending school.  Last week Monday we traveled to Beaumont Hospital in Royal Oak for a follow-up appointment with Meghan's surgeon.  Everything is looking good - the bone in her arm is now about 90% healed and because she is (hopefully) done with chemo we should start seeing greater gains in her strength and flexibility as a result of the physical therapy she is doing.  We will go back again in December (Meghan is hoping to get the "thumbs up" on playing volleyball this winter at that appointment).  Today (Monday) Meghan had a PET-CT scan.  We will meet with Dr. Mitchell, her primary oncologist, on Thursday afternoon to review the results.  What we hope to hear at this important appointment is the official statement that Meghan is in remission. 

I have been feeling quiet and reflective these past few weeks.  I haven't had much time or strength to process all the feelings flowing through me.  I don't feel quite ready or capable of articulating them, but I think it's time that I tried...

I know I should feel ecstatic about Meghan (likely) going off treatment but it is also really scary.  For a long time they've been closely monitoring her and doing these treatments that were killing off the cancer in her body and keeping new cancer cells at bay.  As much as I want this part of the treatment to be over for her, it feels a little bit like the safety net is being pulled out from underneath us.  And as strange as it sounds, I'm already missing our "family" up on 7 South.  We have built so many relationships and it's all just become the way of life we've grown accustomed to.  It feels like starting all over again.  What now?  What next?  Where do we go from here?  What is God's purpose for our lives?  You see, for the last 10 months it's been really clear.  I have had a clear understanding of what my purpose was.  In fact, I have never felt more purpose-ful in all my life and especially in all my years of mothering.  I am longing for that same kind of clarity now.  I know that I need to live in each day presently and aware and actively engaging those around me.  I know that I need to just keep walking obediently and trusting God for whatever tomorrow brings but the future is looking a little murky and unsure to me.  And with this fog that has been encircling us beginning to clear, I am discovering all the many bits and pieces laying about that weren't visible before and I am completely overwhelmed at where to begin to pick them all up and put them in their respective places.  So many things to adjust, catch up on, re-arrange - we need to find a whole new "normal" again.   I am learning that you don't just move on from something like this.  I know that everyone wants for it to be over and done with - for Meghan to be o.k. - but that's not really how it works.  We can't go back - we are forever changed.  Cancer has changed the context in which we will live our lives (some of it good, some of it not so good).  And while I am very hopeful that we are through the worst of it, there is still the realization that Meghan has years ahead of her of monitoring, scans, and other issues that may arise because of what she has been through.

We've been very careful not to dwell on or look at the statistics too closely.  From the beginning we firmly took the position that Meghan was not a statistic but rather a child in the the hands of a sovereign God who loves her more than we do.  We knew (and still know) that the outcome of all this was decided long ago.  We are, in essence, merely along for the ride.  Day in and day out I told myself that whatever {{WHATEVER!}} happened, Meghan would ultimately be healed - whether it was here on this earth or up in heaven - she would be healed.  But I am also a frail and sinful human who sometimes forgets that Meghan is more than my daughter (she is first and foremost a child of God merely on loan to me).  I'm still prone to possessiveness and selfishness and to some extent I feel like I've been deceiving myself.  Who am I kidding?  I'm not ready to let her go!  So, unfortunately, I have those dark moments of dwelling in the "what-ifs" - I am prone to wander to that place in my head that holds the statistics...

This is the latest statistics out of St. Jude's.  You'll notice that osteosarcoma has the second to lowest 5-year survival rate of childhood cancers.  I also read an additional recent study that indicated that even in "successfully treated" cases of osteosarcoma, they expect 1/3 of the patients to relapse.   Both of these items came to my attention at the same time that I began reading a book which our support group at Gilda's recommended.  The first chapter was about a family whose son had osteosarcoma.  He was treated successfully, then relapsed 6 months later, and died another 6 months after that.  Since we've begun this journey, we've come into contact with several families who have had to say goodbye to their kids, most notably the McGraw family.  It's just a hard reality and one that, at times, weighs heavily on me.  I wondered with the seemingly sudden onslaught of these realities if God was preparing me for what was to come or if it was the enemy's way of tempting me to question and despair.  I have since decided that it simply "is what it is" and what I am called to do is simply trust God and His perfect plan.  I have to continue moving forward in faith.  (Pastor Dale had a great sermon back in August entitled "Faith is the Victory."  You can hear it here.) 

So what does moving forward in faith look like for me today?... I think it means that I need to choose to continue trusting in God.  I need to take a moment to breathe and pray.  I need to cherish the time I have with my kids (instead of being annoyed or impatient with them).  I need to try harder (a lot harder) to bless my spouse.  I need to pray earnestly for some direction and peace.  I need to keep putting one foot in front of the other.  I need to enjoy the blessings God places in my life every single day.  I need to walk in obedience - whatever the cost.  I need to strive to put God's glory first.  I need to let go of my fears and give them over to God - believing in His goodness and faithfulness.      

Search me, O God, and know my heart;
test me and know my anxious thoughts. 
See if there is any offensive way in me,
and lead me in the way everlasting. 
                                                            - Psalm 139:23-24

soccer season...

                  
                  (Click on photos to enlarge - you really need to see these facial expressions!)
1)  Yea, I'm the goalie... hanging out by the goal... got it covered... yea...   2)  Uh-Oh... it seems the ball is moving this direction...   3)  Ok... I can totally handle this... I am READY!   4)  Oh no... Oh no... Maybe if I close my eyes this won't seem like it's happening...   5)  Whoa... what just happened?

faith...

Jennifer McGraw (Ethan's amazing mom) was recently interviewed about her faith and the experience of slowly losing her son to cancer.  Click here to read the article from this past Saturday's G.R. Press (Religion section).  We continue to hold the McGraw family close in our thoughts and prayers and ask you to do the same.

teach us to count the days...

Everyday is a journal page
Every man holds a quill and ink
And there’s plenty of room for writing in
All we do and believe and think
So will you compose a curse
Or will today bring the blessings
Fill the page with rhyming verse
Or some random sketchings

Teach us to count the days
Teach us to make the days count
Lead us in better ways
Somehow our souls forgot
Life means so much
Life means so much
Life means so much

Everyday is a bank account
And time is our currency
So no one’s rich, nobody’s poor
We get twenty-four hours each
So how are you gonna spend
Will you invest or squander
Try to get ahead
Or help someone who’s under

Teach us to count the days
Teach us to make the days count
Lead us in better ways
Somehow our souls forgot
Life means so much
Life means so much
Life means so much

Has anybody lived who knew the value of a life?
And don’t you think giving his own
Would prove the worth of yours and mine?

Teach us to count the days
Teach us to make the days count
Lead us in better ways
Somehow our souls forgot
Life means so much
Life means so much
(Every day is a gift you've been given
Make the most of the time, every minute you're living)

Life means so much

(Life Means So Much - music & lyrics by Chris Rice)

did you know that....

• ONE in every 330 American children develop cancer before the age of 20.
  
• Each year in the U.S. over 12,600 children will be diagnosed with cancer.
  
• Childhood cancer is the #1 disease killer of American children - more than asthma, diabetes, cystic fibrosis, AIDS, and muscular dystrophy combined!
  
• 80% of children have metastatic disease at time of diagnosis as compared to only 20% of adults.
  
• Treatment of childhood cancer is intense and typically involves: surgery - radiation - chemotherapy.
  
• There are currently more than 270,000 childhood cancer survivors in the U.S.
  
• Late effects of childhood cancer treatment are common in survivors, and approximately one-third are moderate to severe.

               - Neuro-cognitive deficits (often loss of 10-50 IQ points)
               - Heart failure
               - Pulmonary fibrosis
               - Treatment-induced secondary cancers
               - Cataracts
               - Hearing loss
               - Endocrine abnormalities
               - Loss of health care coverage (pre-existing condition when they reach adulthood)

(Information taken from Candlelighters Childhood Cancer Foundation)

this is the stuff...

This is the stuff
The smallest moments
This is the stuff
I need to notice
This is the stuff life is made of

(chorus from a Carolyn Arends song)

I've been feeling really quiet (it hasn't helped that it's been raining for days here).  Today the rain has let up and everyone is back at school and I really want to focus on living joyfully.  I know it's a cliche' but we've got to cherish each and every moment for what it is - a gift. 

So... I am sharing a couple of small, joyful moments from the last week...

Meghan's latest creation - the caterpillar faux-hawk!

And this precious girl turned 9 years old!

Her actual birthday was when Meghan was
in the hospital and a highlight of that day
was riding in the car and hearing Aidan say
to Riliegh,

       "Rileigh, how 'bout today
        we don't fight since it's
        your birthday?"

This photo was actually taken a few weeks ago when we were at the zoo.  Aidan is definitely a big "joy-booster" to have around.  I'll preface this story with telling you that Aidan has always been terrible with names - he constantly mixes up my sisters and his grandparents all the time (or he distinguishes between them with funny things like "the grandma & grandpa with the dog Buster" vs. "the grandma & grandpa with not the dog Buster" which then turned into "the grandma & grandpa with the dog Buster who died" vs. "the grandma & grandpa with not the dog Buster who died" and lately it has been "the grandpa & grandma with marshmallows" vs. "the grandpa & grandma with gummy worms.")  He has also talked about his Uncle Kirk (who happens to live in Washington) but then informed me he was talking about "the Uncle Kirk who lives with Liana" (who is not Uncle Kirk, but rather Uncle Randy, his cousin Liana's dad).  ANYWAY... as we were riding home from church yesterday Michael was asking each of the kids about their new Sunday School classes and he asked each of them who their new teacher was.  After the girls answered, Aidan piped up with, "I can't remember her name... oh wait, I know - it's MRS. SNOW!"  Why is this so humorous you ask?  Because his teacher's name is MISS WINTER!

back home...

We are home with Meghan now.  She is doing quite well (actually remarkable considering how she was just a couple days ago).  We are holding off on school tomorrow and giving her an extra day of rest.  Ethan's funeral has been set for Thursday afternoon and we will be back in clinic on Friday.  Thanks for your continued prayers.

another new day...

Meghan is doing immensely better today.  Her counts made a huge leap in the past day.  WBC - .89 to 18.40 / Hemoglobin - 9.4 to 9.5 / Platelets - 47,000 to 31,000 (they are doing another platelet transfusion today) / ANC - 223 to 1,012!!!  So good news this morning - if Meghan stays fever-free and her cultures continue to be negative, they may let her go home as soon as tonight!  And they have even given the ok for school if she's feeling up to it.  I can tell a vast difference in her yesterday and today as well - she is awake more, talking to the nurses, and giving me a little bit of lip (not really a good thing, but I'll take it at this point!).   

It feels strange to update on Meghan when our hearts and thoughts are so wrapped up in the McGraw family.  Or as Meghan asked yesterday, "Is it going to be ok for us to be happy again?"  Please continue to keep the McGraw family in your prayers and also please remember the teachers, staff, and students of Knapp Charter Academy as they work through this difficult time at the school.  I've had so many different verses and songs running through my head this morning and I keep going from feeling such tremendous peace and joy in thinking of Ethan up in heaven and then a gripping sorrow takes hold as I cry out to the Lord to comfort and hold those left here grieving.  A line from a Bebo Norman song keeps coming into my head - "cause it was not your time - that's a useless line - a fallen world took your life."  This feels awful because it is awful - this is not the way it's supposed to be!  This is a result of the sinful world we live in.    My only comfort truly is that we are grieving with hope because of what Christ has done for Ethan and for us.

WITH HOPE

This is not at all how
We thought it was supposed to be
We had so many plans for you
We had so many dreams
And now you've gone away
And left us with the memories of your smile
And nothing we can say
And nothing we can do
Can take away the pain
The pain of losing you, but ...

We can cry with hope
We can say goodbye with hope
'Cause we know our goodbye is not the end, oh no
And we can grieve with hope
'Cause we believe with hope
(There's a place by God's grace)
There's a place where we'll see your face again
We'll see your face again

And never have I known
Anything so hard to understand
And never have I questioned more
The wisdom of God's plan
But through the cloud of tears
I see the Father smile and say well done
And I imagine you
Where you wanted most to be
Seeing all your dreams come true
'Cause now you're home
And now you're free, and ...

We can cry with hope
We can say goodbye with hope
'Cause we know our goodbye is not the end, oh no
And we can grieve with hope
'Cause we believe with hope
(There's a place by God's grace)
There's a place where we'll see your face again
We'll see your face again

We have this hope as an anchor
'Cause we believe that everything
God promised us is true, so ...

We can cry with hope
We can say goodbye with hope
'Cause we know our goodbye is not the end, oh no
And we can grieve with hope
'Cause we believe with hope
(There's a place by God's grace)
There's a place where we'll see your face again
We'll see your face again

We wait with hope
And we ache with hope
We hold on with hope
We let go with hope

(lyrics by Steven Curtis Chapman)

pray...

healed...

Ethan passed peacefully and quietly into the heavenly realm at 10:01AM this morning.

We REJOICE with Ethan - he has been wonderfully, completely healed and we GRIEVE alongside his family and loved ones.  May the God of all comfort and strength surround
us all with his love and peace.

The LORD gave,
and the LORD hath taken away;
blessed be the name of the LORD. 
                                               - Job 1:21b

more about Ethan...

Update on Ethan as of this morning (from his carepage):

We had a pretty long night. Ethan started having seizures and is now non-responsive to light and unable to communicate. Jared, Erik, and Joe all came up about 3 to hold him and say final goodbyes.  We just wait now for his body to shut down.  We have decided to stay here in the hospital since he progressed so quickly to this state.

If you would like to come say goodbyes you are welcome. Ethan is in room 7266. We know that he can still hear us and feel us near him, so please do not hesitate if you would like to talk to him one last time.

Also, a good friend of the family has volunteered to set up a meal schedule. Please contact Michele Kopinski at 452-0189.

Thanks again for all prayers, messages and visitors yesterday. We are getting through this with the love of Christ shining through all of you.

"Lamb of God, you take away the sins of the world, have mercy on us. Lamb of God, you take away the sins of the world, have mercy on us. Lamb of God, you take away the sins of the world. Grant us peace. Grant us peace." Agnus Dei we sing at church.

heavy hearts...

Before I get to the reason for the title of the post I want to give you a quick update on Meghan.  Her counts today: 
WBC - .45 (up slightly) / Hemoglobin - 8.2 (received a blood transfusion today) / Platelets - 23,000 (received a platelet transfusion) / ANC - 18    So even though her WBC was up slightly, her ANC dropped from 65 to 18 (it is supposed to be over 1,000).  Her ANC is a critical number as it estimates her overall ability to fight off infections.  After her transfusions her fever spiked again so they drew additional blood cultures.  So far the cultures have come back negative.  They have also determined that she has developed mucositis in her throat/esophagus.  She is throwing up periodically and has not been able to eat or drink anything since being admitted.  (She is even struggling with taking her pills and usually ends up throwing them up.)  She is sleeping a lot.  We also shared some news with her this evening that was very hard for her...

I have mentioned the McGraw family before and many of you know that Ethan is a classmate and friend of Meghan who has been fighting cancer for the last 5 1/2 years.  Yesterday his family held a "Celebration of Life" party for Ethan at Gilda's Club.  (I was able to briefly stop by the party but Meghan was very sad that she couldn't be there.)  We have all been aware of Ethan's prognosis but today his family learned that he has much less time than they originally were hoping for.  We are asking all of you to join us in praying for Ethan and his family.  This is a post from today on his carepage (carepage name:  ethanmcgraw):   

Thanks and Prayers

Thank you so much for all that came to Ethan's party yesterday. He wasn't feeling 100% but enjoyed seeing all of you and hearing his music!  We thought it was a huge success!

Today however we are in the hospital.  Ethan actually came down with a headache on Friday morning and stayed in bed most of Friday. Saturday he slept until about 1:30 and after the party he went back to bed for a while and then laid on our couch for a few hours before going to bed about 10pm. He came into our room about 3:30AM and slept with us. I got a little worried around 7 when his breathing became labored from pain he was having.  So a call to the Hem/onc doctor and he was here by 8:30 to get a CT scan. The results came back about 11AM. The tumors have grown immensely and are pushing on his brain which is why he's been sleeping and in a lot of pain. Doctors are giving us about a week with our precious son. We've been admitted for today just to get fluids and pain meds started and will talk to hospice tomorrow morning before being released. We plan to spend our last days with him at home.

Right now he resting comfortably and we hope to have some quality time with him. Since this morning, when he has been awake he has been disoriented and in a lot of pain. We're hoping that once the pain meds get evened out he will be alert and awake so we can have some conversations.
We will let you know when people can visit and will continue to update.

Obviously, prayers are needed for Ethan to be painfree. We ask for strength for our family - especially Ethan's brothers Erik & Jared. We thank you all so much for lifting us up to the Lord. He is our Maker and Redeemer and He will hear all.

"Guide my feet, Lord, while I run this race, 'cause I don't want to run this race in vain. Hold my hand, Lord, while I run this race, 'cause I don't want to run this race in vain. Stand by me, Lord, while I run this race, 'cause I don't want to run this race in vain."  Old gospel that has been running through my head this morning.

I was able to visit briefly with Ethan's mom, Jennifer, this evening (his room is just a few doors down from Meghan).  Words seem so very inadequate - we mostly just shared hugs and tears and I am also comforted by the fact that we share something far greater as well - hope in Christ.  My heart just goes out to the McGraws during this most difficult time.  Please join me in continually praying for them!

Yet I am always with you; you hold me by my right hand.  You guide me with your counsel, and afterward you will take me into glory.  Whom have I in heaven but you?  And earth has nothing I desire besides you.  My flesh and my heart may fail, but God is the strength of my heart and my portion forever. 
Psalm 73:23-26

We have this hope as an anchor for the soul, firm and secure.  Hebrews 6:19

Those who sow in tears will reap with songs of joy.  Psalm 126:5

He will wipe every tear from their eyes.  There will be no more death or mourning or
crying or pain, for the old order of things has passed away.  Revelation 21:4   
                                      (What a glorious day that will be!)

For this God is our God for ever and ever;
    he will be our guide even to the end. 
                                                                  Psalm 48:14

 

 

childhood cancer awareness month...

SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH

JOIN THE MILESTONES VIRTUAL WALK FOR 12,500 DURING SEPTEMBER 2008

One Goal:  Bring 12,500 people together for a virtual walk to support each one of the children who are diagnosed each year

One Month:  September - Childhood Cancer Awareness Month

One Person:  Can make a difference in the lives of 12,500

In honor of Childhood Cancer Awareness Month, CureSearch is challenging you to "walk virtually" and show your support for children with cancer.  A staggering fact - each year 12,500 children and their families hear the frightening words, "your child has cancer."  These statistics could represent a child in your neighborhood, in your child's school, on the neighborhood T-ball team or... yes, it could be a child in your own family.  Join us throughout the month of September for a virtual walk in support of children with cancer and their families.

Information About Childhood Cancer

      Did you know....

• 12,500 children are diagnosed with cancer each year
• Of those diagnosed, 1 in 5 will not survive
• Together we can reach the day when every child with cancer is guaranteed a cure

CureSearch National Childhood Cancer Foundation exclusively supports the work of the Children's Oncology Group, the world's premier pediatric cancer research collaborative, treating more than 90% of children with cancer. Located at more than 200 children's hospitals and cancer centers across North America, this group is responsible for every major breakthrough in pediatric cancer research.

Learn more about childhood cancer and the CureSearch mission at www.CureSearch.org

(Additional great information on the CureSearch Blog)
 

unexpected detour...

This is unfortunately a photo of the ER which we came into around 4:30 am this morning.  Meghan got up in the middle of the night with a fever and chest pain.  In the ER they accessed both of her ports, did lab draws from both plus a peripheral draw, started fluids and high-dose antibiotics, and did a chest x-ray.  She had a bit of a reaction to one of the antibiotics (all-over terrible itchi-ness) but that seems to be under control with the benadryl they gave her.  She has now been admitted up on the oncology floor (7 South).  This is called a "F & N" Admit (fever and neutropenia - click for explaination).  Meghan has been very fortunate to never have had one of these before - it's just a big ole' bummer to have it at this point!  We will be here for a minimum of 48 hours while they finish the course of antibiotics, wait for blood cultures to come back and for the x-ray results.  Her counts are extremely low and she will not be released until they come up considerably. 

     White Blood Count = .36 (should be 5-10)
     Hemoglobin = 8.8 (should be over 12)
     Platelets = 43,000 (should be over 150,000)
     ANC = 65 (should be over 1,000)

The white blood count and the ANC are the biggest concerns right now as she is likely fighting some kind of infection and has pretty much no immune system.  She will receive a blood transfusion for the hemoglobin and a platelet transfusion for the platelets.  In order to leave her cultures have to come back negative, the fever needs to be gone, and her counts need to show a significant rise.  We have been told that it is not uncommon (especially considering the last chemo drugs used and being this far into treatment) to have to stay a week or more.  (Obviously we are all hoping for a shorter stay!) 

Please pray that they can pinpoint the infection quickly, that it not be a serious one, and that it can be treated quickly and effectively.  Pray also for Meghan's spirits - this is (understandably) a big disappointment to her and she is also apprehensive and scared about what is happening.  AND pray that we can bring her home soon!

stand up 2 cancer - TONIGHT!...

I wanted to remind everyone about the special airing tonight on NBC, CBS, and ABC (commercial-free).  If you watch on WOODTV8 you may even see a local "cancer celebrity" that you know :) 

You can also go here and watch the WOODTV8 video.

hidden messages...

Apparently Michael had the same idea as me yesterday only he "hid" his message (a link in the text of my post).  Click here if you missed it.  (My special tribute to him is here.)

And THANK YOU for all the comments, emails, and well-wishes!  We had a great day yesterday - Michael took a vacation day and we just hung out together during the day while the kids were at school.  Rileigh started soccer last night and we all went out for icecream after her practice to celebrate. 

Today Meghan has physical therapy and clinic.  She is doing pretty well with her recovery from this last round of chemo.  She has been at school but is getting very tired out by the end of the day.  Hopefully counts will be good today!

20 years...

A common response I give to various questions of my children is...

      "Yes, I know and I STILL married him!"

Today we celebrate 20 years
     that's 240 months
          or 7,300 days
               or 175,200 hours
                    or 10,512,000 minutes
                         or A.K.A. the best moments of my life.

Go here for my special tribute to Mik (and to see him as you've never seen him before!).

               "My beloved is mine, and I am his." Song of Solomon 2:16a

back-to-school...

Well, this morning was a first for our family -
all remaining children of the Haan household
went off to school this morning for the whole
day.  This is the first time in 20 years - yes,
20 years - that I have not had a child home
with me during the day because they were
either too young for school or we were
homeschooling (actually there were some
early years when we only had Lauren and I
worked full-time so I'm not counting those
years either). 

Meghan was very determined to be there
the first day and despite feeling a little
pukey she persisted in making it!  Hopefully
she won't be too tired out by the end of the
day. 

I went back through photos from last year
and thought it would be fun to post them
side by side (I thought about having you
guess which year was which but Meghan
is a dead give-away :)

 
Meghan - Fall 2007                                                 Meghan - Fall 2008

We sure didn't know what was in store for us last fall!  Looking at these pictures Michael commented
that likely the cancer was already growing in Meghan's arm last fall but we just didn't have any idea.

 
Rileigh - Fall 2007                                                  Rileigh - Fall 2008

In looking at these pictures of Rileigh I really see a more confident little girl - she has matured a lot this
past year and really started to "come into her own."

 
Aidan - Fall 2007                                                    Aidan - Fall 2008

And wow - Aidan too!  He looks so timid and nervous last year and this year there is a definite sparkle in
his eyes and a "been there, done that" attitude.

 
Aidan & Noah - first day of kindergarten                Noah & Aidan - first day of first grade

(Apparently Noah was feeling a little more enthusiastic about the first day of kindergarten :)

And what about mom, you say?  Well, after dropping the kids at school and Michael at work, I did something totally self-indulgent.  I took a 5 mile walk around Reeds Lake by myself and then sat at a coffee shop with my laptop before heading home to try and cross off items #1-5 on my list of 3,418* things to do. 

             *number may be slightly inflated for dramatic effect

My mother-in-law called Michael and asked if I went home and cried :)  I told him I did not cry (yet) but I did reflect a lot.  The photo on the left was taken on my walk and I was thinking a lot about the path behind us and before us.  We have no idea what the next year will hold {{we certainly didn't last year}} and yet I am choosing to face it with HOPE.  Amidst the uncertainty, pain, and struggles, I think the last year has given us a great many gifts to be thankful for, one of which is a fresh perspective on life in general.  And it feels scary, hopeful, and thrilling all at the same time.  I'm excited (yes, excited!) to see what God has planned for us (the good, the bad, and everything in between).

Here are some great verses I'm meditating on today:

The LORD, He is the one who goes before you.  He will be with you, He will not leave you or forsake you.  (Deut. 31:8) 

O LORD, I know the way of man is not in himself; it is not in man who walks to direct his own steps.
(Jer. 10:23) 

The steps of a good man are ordered by the LORD, and He delights in his way.  Though he fall, he shall not be utterly cast down; for the LORD upholds him with His hand.  (Psalm 37:23-24) 

I am continually with You; You hold me by my right hand.  You will guide me with Your counsel, and afterward receive me to glory. (Psalm 73:23-24) 

For I am persuaded that neither death nor life, nor angels nor principalities nor powers, nor things present nor things to come, nor height nor depth, nor any other created thing, shall be able to separate us from the love of God which is in Christ Jesus our Lord. (Romans 8:38-39) 

But one thing I do, forgetting those things which are behind I press toward the goal for the prize of the upward call of God in Christ Jesus. (Phil. 3:13-14) 

I know whom I have believed and am persuaded that He is able to keep what I have committed to Him until that day.  (2 Tim. 1:12) 

He who has begun a good work in you will complete it until the day of Jesus Christ.  (Phil. 1:6) 

Do you not know that those who run in a race all run, but one receives the prize?  Run in such a way that you may obtain it.  And everyone who competes for the prize is temperate in all things.  Now they do it to obtain a perishable crown, but we for an imperishable crown. (I Cor. 9:24-25)

Lay aside every weight, and the sin which so easily ensnares us, and let us run with endurance the race that is set before us, looking unto Jesus. (Heb. 12:1-2)

****************************************************************************************************************************
(edit:  Well, I did not complete #1-5 - it is purely an illusion that having all your kids in school means that
you have a bottomless reservoir of time in which to accomplish things!)

a day to rejoice...

Fear not, for I have redeemed you; I have called you by name; you are mine.
When you pass through the waters I will be with you; and when you pass through
the rivers, they will not sweep over you; when you walk through the fire, you
will not be burned; the flames will not set you ablaze.  For I am the Lord, your
God, the Holy One of Israel, your Savior.                                 - Isaiah 43:1-3

This was one of the verses we claimed at the very beginning of this journey and it seems fitting to share it again today.  We are HOME from Meghan's 12th and final round of chemo and it is truly a day to rejoice!  And while this is not the end of the journey, it is a HUGE milestone and a definite reason to celebrate!

   
Meghan's hospital white-board                                    Last bag of chemo hanging on IV pole
   
Special treat for a special day                                    "The chemo is now leaving the building..."



Thank you to everyone who came down to the hospital to celebrate (and eat cake) with us!  Thanks also
for the cards, calls, emails, facebook messages, etc.. - we love and appreciate all of you!

We counted down the last moments of Meghan's chemo
and then sang the doxology ("Praise God from Whom
all Blessings Flow") together.  As the tears streamed
down our faces we embraced and cheered for joy!

Meghan was pretty exhausted and fell asleep shortly
after her chemo finished.  On Sunday morning we were
able to pack up and head home.  Meghan is resting
and receiving IV fluids for the next three nights.  She
is still very determined to attend school on the first
day (Tuesday) so hopefully she will feel up to it.

We will continue with clinic and physical therapy
appointments for the month of September and scans
will be scheduled for the end of the month. Please
pray that the scans will remain clear so that Meghan
can officially be declared in remission.   

   

"Glorify the Lord with me;   
    let us exalt his name
   together."  Psalm 34:3

now showing at a hospital near you...

              We are camped out in room #7273 at DeVos Children's Hospital waiting to begin....
                       MEGHAN'S LAST ROUND OF CHEMO!!!
                                        {{{insert cheers, hollering, whistles, etc.. here}}}

We came in this morning to check if her counts were high enough for her to go ahead with chemo.  She had a blood transfusion this afternoon and now we have been admitted to the inpatient unit on 7 South.  Chemo will begin later tonight.  We hope to be released Sunday morning.  We are planning on celebrating all day Saturday as she receives her last infusion of chemo (hopefully ever).  Please feel free to stop by and visit.  (Visiting rules have changed slightly
here - you need to stop by the nurses' station before going to Meghan's room.)

I will be posting more soon about what all remains for Meghan.  September is already quite full with more physical therapy and clinic appointments.  We also have another follow-up appointment with her surgeon mid-month.  It is my understanding that she will have scans in about a month and if they are all clear she will be declared "IN REMISSION" (that sounds nice, doesn't it?).

"Oh, taste and see that the LORD is good; blessed is the man who trusts in Him!
Oh, fear the LORD, you His saints!  There is no want to those who fear Him."       
                                                                                            Psalm 34:8-9

stand up 2 cancer...

Another opportunity for Meghan happened this week Tuesday morning...

Meghan was asked to be part of a 90 second local tv spot on WOODTV 8/WOTV 4 that will be part of the Stand Up 2 Cancer special that is coming up.  The special is being shown, commercial-free, on all three major networks at 8:00 pm on Friday, September 5.  If you want to see Meghan's spot (which may just be a few seconds depending on the editing) you will have to watch the special on WOODTV 8. 

gilda's club...

Monday evening, August 25, our family had the honor of speaking at the Gilda's Club 8th Annual Golf Outing Fundraiser.  We joined the golfers for a fantastic dinner at The Acorn Grille (part of Thousand Oaks Golf Club).  Our kids were the only kids there and they thoroughly enjoyed their fancy dinner and trying new things like the shirley temples/roy rogers that the waiters kept bringing them (Aidan just loved the extra cherries they kept giving him all skewered on a plastic sword).  They were also fascinated by the "dessert before dinner" (sorbet served between the salad and main entree).   {{{We were all a little spoiled! }}}

As a family we have been attending Gilda's Club for several months now.  We go on Thursday evenings and have dinner there and then we all go to support groups.  We have found it to be a great resource and support (and the kids have a lot of fun!).  For our short presentation, I talked briefly about our family's personal journey through cancer and our experience being a part of Gilda's Club and then each of the children told their name and age and a couple things they each liked about Gilda's.  Michael finished with some thoughts he had prepared specifically about Gilda's.  I'd like to share his part here:

To set some context for my thoughts here are some quick facts taken from gildasclubgr.org:

• There will be more than 44,200 new and serious cancers         
   diagnosed in Michigan this year.

• Those cancers will impact more than 265,000 people, counting
   spouses, children, friends and family members whose lives will
   be changed because someone they love has cancer.

• Men have a one in two chance of getting cancer; women one in
   three.

• Cancer Costs the US more than $70 billion annually in lost
   productivity alone.

How many of your lives are (or have been) touched by someone you know and love battling this disease?  How many of you may have lost someone to it?  Cancer changes the context with which you interact with life and it is precisely in this context that you will find Gilda’s Club of Grand Rapids to be an oasis.

You see, to the non-afflicted or unaffected there are a lot of misconceptions and misunderstandings. You find yourself dealing with “normal” people who make hurtful remarks or stares, employers who don’t understand, and people who (frankly) don’t get it (and to be just…why should they).  In addition, along with the disease itself, an exhausting pace accompanies it.  To those spouses, children, friends and family members whose lives will be forever changed because of cancer, we know (and are here to tell you) Gilda’s “get’s it.”  We also know that you “get it” too!

The oasis of Gilda’s offers many things:  resources, classes, support groups, counseling, and meals that we this group of fighters, survivors, and grievers find to be an enormous blessing. Beyond that is the camaraderie you develop with other “Gilda heads” who know what journey you are walking.  It is not unlike those who fight in war together, and that is the reality of it.  This is war.

In closing, I not only want to tell you what Gilda’s means to me but communicate to you what your investment means to us all through Gilda’s. By your loving and generous contributions to Gilda’s you make their mission possible and our lives that much better. They help to provide a window of time and a place to talk, act, feel, and be normal when the unpredictable trials of cancer swirl about you. So, to Leanne and our family at Gilda’s, and to all of you who help to make it possible....   Thank you so very much.