vibrant life

moving forward...

This past week I did something that felt really good.  It was a physical confirmation that we are indeed moving forward.  Start here where you may remember this post about our kitchen counter.

This is that same counter Monday morning                      and later that same day

 

Meghan is down to only taking 2 prescriptions on a regular basis plus a multi-vitamin!  We also got the ok from her oncologist to schedule her port-removal surgery (probably in early March).  With this news and her latest set of scans being clear, I finally felt like it was ok to get rid of all the other meds from her treatment. 

I hope to never see one of these on my kitchen counter again...

 

And Meghan is thrilled to see these go...

 

And this?  Well, Meghan would shake her head and tell you, "just don't even ask!"...

 

(Let's just say that those nasty, painful throat and mouth sores that can result from chemo can also show up in other places as well...)

I also packed up all of the rest of her unused medical supplies (IV supplies, port supplies, etc..).  These supplies, along with her prescriptions that had pills remaining, are all getting donated to a clinic in Cuba that Meghan's primary oncologist, Dr. Mitchell, volunteers at.  They are incredibly short on supplies and medications and it is great knowing that these excess items can be of benefit to other children in need.

I am amazed at all the pills Meghan had to swallow over the past year and so glad that she is almost done with that aspect of treatment.  These next photos should give you some idea (these are all the prescriptions that she had over the year).  I am extremely grateful that we live in a place where these were all readily available to her along with the great medical care she received!

far too long...

 So... it has been awhile since I've posted (as many of you have been reminding me).  I apologize for the lack of updates here.  It's definitely not because there hasn't been anything to tell you (in fact, I'll have several posts just to catch you all up), but rather it has just been really BUSY.  It's strange how different things are for us compared to last year.  This past year was busy too but in a totally different way and much of that busy-ness included a lot of waiting and sitting (appointments and hospital stays) which proved helpful for updating the blog on my laptop.  This newer busy-ness is more about running around and doing things like working, cooking, cleaning, helping with homework and projects, various appointments and practices - just the general, every-day busy-ness of LIFE.  It's weird how all that time we gained being out of the hospital and having fewer appointments just got filled up with other stuff immediately!  And of course I still feel like we are "catching up" on a lot of things that got pushed aside last year.  I suppose in many ways we are still picking up the pieces and trying to find a new balance to life and all it requires.  So first off... a little catch-up on the past two months...

The end of November included celebrating Lauren's 20th birthday, Thanksgiving, enjoying a visit from Michael's sister Pam (from CA), and our 20th Highschool Class Reunion.

December was a busy month that also brought a rush of memories for us.  Many 1-year anniversaries - that first fateful dr. appt., Meghan's first MRI and CT, the MRI report, confirmation of cancer, appointments galore (what a whirlwind), biopsy surgery and official diagnosis, port placement surgery and first round of chemo, etc..  Michael and I found ourselves re-living a lot of those first heart-breaking moments and also reflecting a lot on all the blessings God provided and His amazing love and care for us over the past year.  It also brought us each at different moments to tears of gratitude that our precious daughter is still here with us!  It hit Michael while we were decorating the Christmas tree together and Meghan climbed up on the stool to put on the finishing touch - the star on top.  It hit me when I watched her singing with her 7th grade choir for the holiday concert.  I remembered back to last year when I had to watch her concert right after she had been diagnosed and I wondered if it would be the last time I would get to watch her participate in something like that.  And December included all sorts of other things as well...

Michael and I learned that we are going to be grandparents!  That little cutie on the left is our grandbaby who is currently squirming his/her way around in Lauren's belly (and making her feel miserable).  We are excited to meet this new little one sometime in August (due date is August 11, which happens to be Lauren and Eric's 2nd wedding anniversary!).  And please feel free to tell us that we are way too young to be grandparents. :)

As a parent, you hope to never see a photo like the next one...

yep... busted and behind bars... (not a very good example for their new niece/nephew)

   

These photos were taken at the Grand Rapids Correctional Facility Public Museum.  We were there on December 2 for the Helen DeVos Pediatric Hematology/Oncology Christmas Party.  We had a great night seeing a lot of our "cancer friends" and the doctors, nurses, and staff that we have come to know and love.  We got to roam through the museum, ride the carousel, eat snacks, take a picture with Santa, AND the highlight of each year's party... watch a special play written by Dr. Axtell (one of the oncologists) and performed by all the docs, nurses, etc..  This year's play was a spoof on Peter Pan and it was HILARIOUS!  We thoroughly enjoyed everyone's great performance and the extra funny stuff custom-tailored for cancer patients and their families. 

     

I'd love to post a bunch of photos from the play but they are probably
more funny to us having seen it than to all of you.  Here are just a
few favorites... 

Captain Hook (Dr. Dickens) with Aidan

Peter Pan (Dr. Kurt) with Meghan, Rileigh, and Aidan

Dr. Fahner as the Sugar Plum Fairy (apparently Dr. Axtell always
writes in a bit part that includes Dr. Fahner dressing in a pink tutu)

The kid's favorite - Aaron (one of the PA's) as Tinkerbell (or rather,
TANKerbell - "You can call me Tank" - complete in a green tutu,
pointy toed shoes, and glittery wings)

Below (click to enlarge) - Jon and Aaron, Dr. Dickens and Diane, Full Cast Photo

    

 

Another party that Michael and I went to was our church's Christmas party which had a "tacky" theme this year.  We fully obliged by wearing the following (which incidentally did NOT win the prize for the tackiest!)...

     

You may remember that green wig and glasses from here.  I painted the tshirts and pulled everything else from various items around the house (yes, I actually own hot pink shoes).

December also brought more doctor appointments - but this time for Rileigh.  She underwent some extensive allergy testing and after finding out that she has numerous severe allergies as well as asthma, we are pursuing immunotherapy for her which includes taking her to the office weekly for allergy shots.  She is a real trooper and was actually excited about having her blood drawn and getting the shots (I suppose that is what happens when you see your older sister have that stuff done on a regular basis).  Meghan's oncologist also recommended that the whole family get flu shots this year (Meghan received hers in clinic) so we had a fun family outing one evening for that as well. 

Meghan has been continuing her weekly physical therapy and she added a new therapy as well each week - Aqua Therapy.  This is time spent in the therapy pool at Spectrum doing various strengthening and stretching exercises.  Meghan really enjoyed the time she spent working with Nancy in the pool.   We have since decided to discontinue the pool therapy because Meghan is now playing volleyball as well (more on that later).

    

These photos are from the kids' school holiday concert.  1. Meghan singing in the 7th Grade Choir  2. Rileigh and the rest of the 4th graders playing their recorders  3. Aidan and Noah (the first graders all wore reindeer antlers and Aidan & Noah decided that red noses were a good addition)

Other fun stuff:

• I got to spend a wee bit of time in my studio to make ornaments for a swap I participated in
   (more on that here and here).

• We celebrated Michael's 39th Birthday

• We delivered Christmas cards and trays of goodies to the doctors, nurses, and staff of 7 South (Hem/Onc Unit)

• We enjoyed a snow day and a 2 week winter break from school (and Michael got to enjoy a week off work between    Christmas and New Years)

• I hosted a "Girls Night" dinner with some of my girlfriends

• We did a lot of this....

 

Snuggling and reading together (we are currently working our way through the Spiderwick Chronicles).  Aidan also coined a new term - chuggling - this refers to combining chatting and snuggling (his favorite thing to do).  :)

 

This photo was taken Christmas morning - what a great looking bunch, eh?

We had the opportunity to catch up with some old friends over the break as well as spend time with both sides of the family. 

December and January were also very busy months for me with my job as secretary of our church (I just returned to work part-time in October).  Our new church building was completed and we spent a lot of time helping move the offices and setting up the new building.  It is always a busy time as well with preparing the Annual Report for the congregation.  We are settling in nicely to our new building and are so thankful for the blessing that having our own building has been.

We also made a trip over to Beaumont Hospital in Royal Oak (near Detroit) for a follow-up appointment with Meghan's surgeon, Dr. Les.  (We go for follow-up every three months now.)  Dr. Les was hoping that Meghan's arm would be a little further progressed so at this point she is continuing with physical therapy and when we see her again in March she may recommend another surgery to clean out the area more, break up scar tissue, and hopefully give Meghan more flexion in her elbow.  She did, however, give Meghan the ok to play volleyball which is something Meghan had really been hoping for. 

We had to jump through quite a few hoops (ok from surgeon, ok from oncologist, ok and sports physical from family dr., evaluation of heart function, etc..) but all is good and Meghan was able to try out for the team and I am happy to report that she made the B team!  This photo was taken at her first game (January 29).  It is definitely challenging her physically and emotionally.  She still has not regained all her energy back and she comes home completely exhausted after practices, but she is showing a lot of determination and perserverance.  She is also struggling with the limitations of her arm but finding creative ways to compensate. 

The other big news from January is that Meghan had her set of scans (x-ray, CT of chest, and full body bone scan) and they all came back clear - PRAISE THE LORD!  It is hard not to feel apprehensive each time these roll around.  She will have scans every three months for this first year off treatment.  The second year it will go to every four months, and then every six months for the third year, etc..  In January we learned of two of our friends' relapses and it is difficult not to consider that possibility for Meghan as well.  I hope in time that this aspect of the journey will get easier!  

Well - that certainly didn't cover everything, but it did cover a good portion of it and it may have even been more than you wanted to know!  As always, we appreciate your continued interest and prayers for our family - may God bless you all richly in this new year!

one year...

Note:  This was written on December 11, 2008, but not previously posted.

Yesterday was an anniversary of sorts.  It was on that date one year ago that we received the MRI Report that confirmed our suspicions of Meghan having cancer.  It wasn't an official diagnosis (that occurred following her biopsy on December 19) nor was it the first inkling of something being terribly wrong (that was her first x-ray on December 4 that showed a mass growing on her bone), but it was the confirmation of the things I felt but had dared not speak outloud.  I can't remember all the details of that day - most of it is a blur - but I can still feel those feelings well up inside me.  That sick feeling in the pit of your stomach - that moment that you just want to rewind or wake up from - those initial feelings of panic, pain, anger, and denial.  Reflecting back on it now I can so clearly see God's grace in all of it because as horrible as that news was to receive, the feelings of peace and trust followed shortly after.  Those first couple of months were such a whirlwind - completely overwhelming and exhausting and chaotic and yet, here we are a year later and we can see God's faithfulness through it all.  I remember picking up the kids from school and driving over to the doctors office to pick up the reports (they couldn't transfer them via computer because the reports were from Metro and we needed them for an appointment with Spectrum).  I had the children wait in the car while I went in to the office.  The gals working hemmed and hawed about handing them over and said perhaps they could find a way to transfer them instead.  When I explained that I had been told that they were ready to pick up they told me I should wait in a room for the doctor.  I just knew.  As I waited for the doctor one of the nurses brought me the reports.  I was alone in the exam room when I read the report and saw my worst fear realized - osteosarcoma.  I had already been doing some research so I knew right away what that meant - cancer.  I cried and slammed my fists on the table.  No no no no - not Meghan, not now, not this!  What are you doing Lord?  The doctor was tied up and I told the nurse that I needed to get back out to my kids in the car and couldn't wait any longer.  I told her I already knew what the report meant.  I stopped in the bathroom to try and wash my face and pull myself together.  I knew I had to go back out to the car and act casual - not get Meghan alarmed.  We had some time to kill before picking up Michael from work so we went to Flowerland to walk around and look at Christmas decorations.  I could tell from the corner of my eye that Meghan was studying me (she and I have always had an uncanny ability to "read" each other) but she didn't ask what was wrong like she normally would.  I think she sensed something "big" and protected herself by not pressing the questions.  I walked around in a complete fog/daze - my mind was whirling in a million directions.  We picked up Michael and I went down to get him with the reports.  We decided not to tell Meghan right away.  She needed to get through her day at school the next day (Thursday) and then we had the appointment with the orthopaedic specialist on Friday morning.  We called our parents and Lauren that evening to share the devastating news.  I still remember those first few sleepless nights.  Crying and tossing and turning.  I would wake Michael up in the middle of the night and ask him to pray with me and hold me.  I just wanted him to be able to say that everything was going to be ok.  I thought we can get through anything as long as I know she's going to come out on the other side of this.  I am so thankful for Michael especially through those first few days of struggling to come to grips with this news.  He immediately reminded me that she was God's child first.  He was in control.  She would be ok - NO MATTER WHAT - she would be healed - whether it was on earth or in heaven - the outcome had already been determined by a loving and sovereign God and we simply needed to trust Him and do everything we could to help Meghan through this scary time.  I also remember the way it felt to try and do simple ordinary things like going to the grocery store to buy groceries.  I would push the cart around in a daze and look at all the people around me.  In my head I wanted to just stand in the middle of the store and scream, "How can you all just keep walking around like this?  Don't you know that my daughter has cancer?!?"  It felt like the world should stop, but it doesn't - life continues on and we have to keep living it.  The outpouring of love, support, prayers was so very overwhelming.  I can't even begin to tell you how grateful we were/are!  I remember the day we told Meghan she had cancer.  I remember thinking beforehand, "Today I have to tell my daughter two things... 1.  That I believe that God is good and faithful and that He loves her even more than I do and 2. that she has cancer."  And I remember wondering how in the world an 11 year old girl was going to reconcile those two things with one another but Meghan was amazing.  Michael and I had sat down with her to tell her and Michael started with reading some scripture.  After we told her we prayed together and Meghan asked if she could pray first.  The first thing that Meghan prayed about after hearing the news that she had cancer was praying for other people in the same situation that didn't have all the same blessings as her - faith in God, love and support of her parents and family, etc..  I was amazed that a young girl could so quickly put her trust in God and also that she could immediately look beyond herself and think of others.  How much she has taught me!  Yes, there were many struggles and pain and questions throughout the last year but overall Meghan has grown so much in her faith and her outlook and compassion for others.  She exhibited remarkable strength and grace and perseverance.  I give all thanks and praise to God for it is truly His grace that led her (and us) through it all.