vibrant life

death is not dying...

Please take 55 minutes of your day and watch this. 

Please.

rainy monday...

My heart's feeling a little heavy today.  Amidst all the great progress and news we've had concerning Meghan the last couple of months, we've also had a lot of reminders about the trials and sadness of life here as well.  Sometimes it makes my heart well up with overflowing gratefulness for the time we've been granted and other times it just makes my heart break for all those around us experiencing set-backs and continuing trials.  And it's not just our "cancer comrades" (though there has certainly been a lot on that front)- there is so much hurt and pain everywhere we look.  Hurting marriages, struggling rebellious teens, friends walking away from the church and from their once-professed faith, economic hardships, sickness of varying degrees and death of loved ones.  There are simply days when I just want to cry out, "Come quickly, Lord!"  Of course this is all balanced by the beauty and joy we find in each day - good friends announcing a long-awaited pregnancy, the arrival of spring, time spent with family & friends, the truth & comfort of the Word, continuing employment and provision for our family, new opportunities, anticipation for the new member in our family (It's a GIRL by the way!) and most importantly by the hope we have in Christ.  Pastor Dale recently preached a great sermon about trials (please listen here). 

So what's new here?  On the medical front....  Meghan had her 3 month scans last week (April 15).  I could hardly believe that it had been 3 months already.  Praise the Lord that they continue to be CLEAR!  She is doing well - regaining energy and hair (lots of hair!).  We met with her surgeon on March 30 (just days before the anniversary of her surgery last year on 4/2) and we were pleased to hear that (for now) we are not moving forward with any additional surgery.  Meghan will continue in physical therapy and we will re-evaluate again in 3 months.  Meghan’s other big news on the medical front is that she had her port removal surgery March 18 and was able to discontinue the last of her prescription meds!  That's right - she is now only taking a multi-vitamin in the morning!  She also got to visit the dentist for the first time in 2 years (she wasn’t allowed to go while on treatment).  She will have to take a high-dose antibiotic for the rest of her life before dental appointments due to the allograft in her arm.  Meghan has managed to successfully maintain a cavity-free mouth for the last 11 years, so it was a bit of a shock for this appointment to reveal 5 cavities!  It really shouldn’t surprise us after the past year and half (all the hospital stays when she didn’t feel up to brushing her teeth and all the throwing up, etc..).  All in all she is doing wonderfully.  In the midst of following many of our cancer friends' journeys and praying over those who have lost their battle, are in hospice, relapse, active treatment, etc..  we are acutely aware of what a blessing it is to feel good and enjoy day after day together doing the normal basic things of daily life. 

On the homefront - Meghan finished the volleyball season.  The team did outstanding - winning all but one game and I was very proud of Meghan for her persistence and determination to stick with it and I really saw a lot of improvement over the course of the season.  Rileigh is continuing her immunotherapy for allergies which requires a weekly visit for allergy shots.  She is also participating in a program called "Girls on the Run" through her school.  She is practicing a few times a week with her team and training to run in a 5K event in May.  We celebrated Aidan’s 7th birthday March 14.  (Can my baby really be 7 already??)  We learned from Lauren’s latest ultrasound that we are expecting a grandDAUGHTER - so much fun!  We enjoyed Spring Break - stayed home and did a few fun things with the kids - bowling & pizza party, The Tale of Desperaux, Meijer Gardens (butterflies!), sleepovers with friends, time with grandparents, etc..   God is good indeed!

So... life continues on...

I read a great quote recently...

THE MAIN THING
IS TO KEEP
THE MAIN THING
THE MAIN THING

Wow - simple but powerful!  What is your “main thing?”  What are you living for?  My prayer is that through the power of the Spirit you are focusing on Christ as your main thing.  Praise God for His grace and love!

I don't want to sign off without leaving a few photos... (and yes, I realize I still owe a post and pics about Disney - keep checking back for that)...

   
1) Meghan - Knapp Knights "B" Volleyball Team  2) Rileigh's recent school project entitled, "Michigan in Hand"  3) Aidan's 7th Birthday (Star Wars cake lovingly made by big sister, Lauren)

   

Aidan and his best buddy Noah (this was a sleepover for Aidan's birthday and they are both dressed up as clone troopers)

   
Meghan is holding her port that was removed.  This was used during her treatment to administer chemo and other meds and do all her blood draws, transfusions, etc.  Hers was a double-lumen port meaning that there were two spots they could access with two separate needles (those are the two side-by-side circles).  The two holes at the top (side in this pic) is where the port was "tacked" into place in her chest.  The metal tube at the top was connected to tubing that went directly into her heart so the medicine, chemo, etc. was pushed directly into her heart and her heart pumped it all over her body.  We've been joking around about making some type of necklace or something with this!

Spending some time over Spring Break with good friends at the Frederick Meijer Gardens - the butterfly exhibit was awesome!

braeden "bub" burgess

  Please join us in praying for the Burgess family.

This sweet, sweet little boy, Braeden (affectionately called "Bub" by his mom) went to live with Jesus on Saturday, April 18.  He was one month shy of 4 years old when his little body succumbed to high-risk neuroblastoma.  Our paths only crossed a few times in clinic but his sweet nature was apparent to all and the strength, faith, and love exhibited in his parents through his carepage (braedenburgess) is very moving and a great testament to the hope we have in Christ.

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

by meghan...

Meghan recently had a school assignment to write an autobiographical paper.  I was excited when she told me that she had chosen to write about her cancer journey.  It hasn't been something that we as parents have pushed or suggested but I have thought for awhile that it would be good for her to think through and process the experience now being (mostly) on the other side of it.  (Of course I was also just very curious to read her own account of it and discover how she remembered it/viewed it.)  On one hand I have been very grateful that she seems to have quite easily put the experience behind her; she has been very much "full-steam-ahead-and-don't-look-back."  But as a parent you also always wonder if she is "dealing" with everything and processing it all in a healthy way.  Michael was quick to remind me that it was Meghan's assignment and her choice how she wanted to write about it or how deeply she wanted to delve into it.  (Read: Mom - don't get too involved, don't try to influence the direction of her paper, remember she is only 12 and it's a school assignment which usually means her focus will be to hurry up and finish the assignment - in other words, don't expect a deep, thorough, soul-searching, brilliant paper!)  So... I helped her with a timeline of events and let her pick and choose the parts she wanted to write about and how she wanted to write about them.  And I have to say I thoroughly enjoyed reading what she chose to say.  I set aside the fact that it was missing a lot of details that maybe she would have thought of if she had spent more time on it and set aside my own feelings on what things were important.  (Then again, a whole book probably could be written had she the time!)  I think she did a great job overall and I loved seeing her sense of humor come through as well. 

With her permission, I am sharing it here and also with her permission I am putting out the opportunity for you to ask Meghan any questions you may have - silly, serious, and anything in-between.  You can leave a comment here with your question(s) or email me.  I will not be including names when I post the questions and Meghan's answers (I won't probably share names with Meghan either, just the questions - I am hoping that this helps you all truly feel free to ask anything you want.)  I will be collecting your questions for the next week or two and then will compile a post with all your questions and Meghan's answers.

Now, for the essay...

Step by Step through Osteosarcoma

 

By Meghan Haan
   

I was sitting in the waiting room at Metro Health Cascade and heard one of the nurses call my name, “Meghan Haan.” This was an appointment I had been asking to go to because my arm was very sore. It wasn't like “ow-I-have-a-bruise-sore” it was more like a searing pain that came and went. It was maybe three to four weeks after the girl's basketball season at school ended and so we thought that it was probably sports related. You know, like a sprained muscle or something. Well, it wasn't going away so my mom and dad decided to take me to see our family doctor and just make sure that it wasn't anything serious like a fracture or something that should be treated right away. After they called my name they did everything that they would normally do when you go in for a regular check-up. After that they took me into a room and told me that the doctor would come in a minute and to wait patiently. After a little while Dr. Kern came in and she said just to be safe she would like to take an x-ray. After the x-ray she pulled my mom out of the room and told her something that I couldn't hear and came back in a few minutes. They told me there was something called a mass growing on my bone and it was probably nothing to worry about, but that we would have to do some more tests to find out why it was there.

Dr. Kern scheduled a MRI and CAT scan for later in the week and that was that. When it came time to go to the MRI and CAT scan Lauren, my older sister, bought some Hannah Montana episodes and let me borrow her iPod for the trip to Metro Hospital. She had to work so she couldn't come with my mom, dad, and me, but my Aunt Karey, who works out there, came and waited with us. We sat for a little while and then a nurse called us back. The nurse brought me to a bathroom and told me to use the bathroom before they got me settled in for the hour scans. After I came out of the bathroom I saw mom, dad, Aunt Karey and the nurse all standing outside of a really big metal door and above it had a sign that told others to be careful when entering the room. Now, through this whole time I admit that I was really scared, and when I saw this door and the sign I lost self control. I started bawling. I really didn't want to go into the room and then when the nurse opened the door there was a skinny, enclosed machine in the middle of the room, the only open part of it was where you got in and out! I was afraid that I might not fit - no, I was hoping that I wouldn't fit so that I could leave.

My mom talked them into letting her stay in the room with me for the scan and after much  comforting and re-assurance I walked into the room and the cycle started over again after I saw a needle. At the time I had no recollection of ever getting poked and I didn't want to. They finally got me to let them poke me and I hated it. It felt like a bee sting but much harder because it pierces your skin and goes under as well. After the hour in the MRI machine the nurse took me into a different room that was a little smaller but had yet another automatic crying machine in it. They had to poke me again and this time the CAT scan was really short but you get a weird feeling like you’re peeing in your pants and you have no control over it. You also get extremely hot and it starts in your toes and goes up and out your head. After that trying morning we went home and we were told to pick up the results in a couple days. Well, my mom went to do that when we were with her after school. She was in there for a long time and I was thinking there was just some paperwork or a long line, but then she came out looking very disheveled and anxious. I asked her what was wrong but she said nothing. I knew her better than that, Pastor Dale had said your family knows you better than you know yourself and this much I knew was true. So throughout the rest of the day I kept watching her and she certainly didn't act like she had been before she went in the office.

Two days later my mom and dad sent Rileigh(my younger sister) and Aidan(my younger brother) to sleep at my Grandma's and Grandpa's house and then they took me out to eat for dinner. The next morning, before yet another appointment with another doctor, they sat down with me and told me something that would change my life forever. The test results showed that I had a cancerous tumor on my right humerus and that I was going to go see a doctor that was to assign me a new doctor and surgeon that would take care of the cancer. All of the sudden I burst out crying and my mind was racing alongside my heart. Is this why they took me out to dinner and had Rileigh and Aidan spend the night and Grandma's and Grandpa's house? What kind of cancer is it? How did it get there? And most importantly, will it go away? These were just a few of the questions that were swarming around in my head. My dad was holding my hand and  my mom was cradling me in her arms but I barely noticed. Everything within my body, except my tears, had shut down at the sound of the word “cancer.” My mom and dad prayed with me and we left for the appointment.

Things started moving very quickly.  The next week we drove to Beaumont Hospital near Detroit to meet with my surgeon.  The following day we were scheduled to go and meet my new oncologist, Dr. Mitchell and talk about treatment and what that would mean for me. When we got there one of the nurses took us into a room and told us that Dr. Mitchell would be here in a minute. After Dr. Mitchell was in the room and introduced herself she explained a lot about cancer and how it is treated.  She started talking about two different objects called a port and a broviac. She explained that while getting a medicine called chemotherapy I would be getting poked a lot  and that to make it less painful and more convenient for me and the nurse that would check me in, they would give me the choice of either one of them and insert it before my  first chemotherapy round. She also explained to me and my parents that with a port I could swim after 24 hours of being un-poked and that it would be under my skin, but with a broviac a tube sticks out of my skin, I can't swim ever while it is in and my mom or dad would have to flush the tube and change the wrapping around it twice a day. So after little thought I chose the port.

The day after the appointment with Dr. Mitchell we went back to Beaumont for the biopsy  surgery on my tumor so that they could determine what kind of cancer it was so that they would know how to treat it. The biopsy was really terrible. I was scared to death and then the nurse who was putting the IV in my arm kept poking me and couldn't get it so I was crying like crazy and I kept thinking what if something like this but worse happened in the surgery? They wouldn't let my mom or dad come with me past a certain point so the surgeon was trying to comfort me but it wasn't working. When we got into the surgical room they wanted me to breathe through this mask and I did. It made me sleepy and it smelled like vanilla. Slowly I lost feeling in my arms and legs. My brain was slowly shutting down and the last thing I heard before going to sleep was one of the assistant surgeons say, “Do you think the IV nurse messed up?” and someone else answered, “Apparently!” We got the biopsy results that same day.  It was confirmed that I had osteosarcoma, a type of bone cancer.

I had a short break from appointments over Christmas and then two days after Christmas I went in for surgery to have my port installed and do my very first chemotherapy round. While waiting for them to call my name for the port surgery, I thought of how glad I was to have my family right beside me the whole time and how grateful I was that they could still make me laugh, even with all the bad news. My dad and I would always joke around about how silly and repulsive the gowns that the hospital makes you wear were and how we should create a line of fashionable hospital gowns and make millions of dollars off of them. For the record, Beaumont Hospital was way worse than Spectrum in this area because they also had you wear these really ugly knee high socks with little sticky circles on the bottom so you wouldn't slip on the floor.

After the port surgery, while I was still asleep, they took me up to Seven South (the Helen DeVos Children’s Hospital Hematology/Oncology Unit) for my first round of chemotherapy. During my first chemotherapy round every time I woke up I'd check if I still had hair or if it was falling out. This was one of the things I dreaded most about the chemotherapy - it makes your hair fall out. Now you may think that it is silly for me - while there are so many other, worse things going on - to worry about hair. Well, you’re probably right. Now that I look back at it, I think I was being totally ridiculous. I mean, come on, I'm lying in a hospital bed with a life-threatening disease and all I could think about was my hair and what people would think when I lost it. Okay, back to my first chemotherapy round. With chemotherapy you always feel blah, but since it was my first time getting it, I  felt blah X 100. So it was more like blaaaaaaaaaaaaaaaaaaaaaaaaaaaah. So in-between sleeping, puking and peeing (the three basics of chemotherapy), I watched cable T.V. (which is a really big deal since we don't have it at home), drew pictures, and wrote an acrostic poem that went like this:
  
                Can make it through the battle
                A n excellent witness to others
                Never a burden to carry if it pleases God
                Cancer's scary but we'll take it one step at a time
                Entirely tiring
                Ready to smile!

About 14 days after my first chemotherapy round I started losing my hair. My mom and I together decided that it would be easier just to shave it off. My mom also shaved her hair off too. We had a lady from our church who does hair for a living come and do it because I didn't want to go out in public and have it done. With each shave she did on my head it was a shave off the top of my heart. After she was done I thought about not looking in the mirror, but I did anyway. I felt so stupid and wished I had a hat to cover my head. Thankfully while we were down in Royal Oak to see my surgeon the first time we went to an outlet mall and bought a few hats. Whenever I looked in the mirror I felt like a boy. My mom and dad said I still looked beautiful, but that’s kind of hard to believe if you were standing where I was. 

About two weeks later I had my second chemotherapy round. I really didn't want to go in for it but my doctor had said this one would be easier to take than the first so, reluctantly, I went back to the hospital. When we got there the nurse assigned to me that round got me settled in and attached the bag of chemotherapy up to my port. Well about half way through the night I went to go to the bathroom and then came out, collapsed to the floor and started throwing up. After this my memory goes blank. When I woke up I was in the ICU and hooked up to these big machines that were taking my blood out of my body, cleaning it, and then putting it back in. I remember very little from the beginning of this round because it turned out that I was allergic to the type of chemotherapy they gave me(called Methotrexate). My kidneys and liver shut down so the Methotrexate wasn't getting out of my body. It was just sitting there, in my body. What I do remember of this round was that they had me on emergency hemo-dialysis and then continual regular dialysis and I couldn’t get up out of the bed because of everything that was hooked up to me. My doctors had not seen this type of reaction before so they had to talk to other doctors from all over the country to find out what to do.  I also received an experimental enzyme that was transported from Chicago by ambulance and that, for three vials which equals one dose, cost $90,000! I also remember that my aunt from California came and visited me within the 14 days in which I was stuck in the ICU. 

My chemotherapy rounds were usually scheduled for every three weeks and took place inpatient for 5 days at the hospital.  My mom or dad always came and stayed with me at the hospital and many friends and family members visited me as well.  When I was feeling up to it, Rileigh and Aidan would come up and hang out with me in my room.  Aidan really liked to play with the controls on my bed and eat the snacks that the nurses brought him.  My least favorite thing about the hospital was the way it smelled and especially the stuff that they called food.  After my first round, I just started asking them not to bring the food trays in my room because they made me feel like puking. 

After my fifth  chemotherapy round, on April 2nd, I went to Beaumont Hospital in Royal Oak (near Detroit) and had the surgery that saved my life. They took out my right humerus between my elbow and shoulder and replaced it with an allograft(cadaver bone with a titanium rod thru the center). I spent seven long days in the hospital there. While I was in the hospital there I also had some other issues. First of all, all the nurses there had no idea of what they were supposed to be doing and my surgeon, whom I loved, had a terrible student doctor. The student doctor was rather in-experienced and you could tell this by the way he came in to see me the morning after my surgery. He opened the door at 6:00 am in the morning when my mom and I were still sleeping and turned on the bright lights. He walked over to me and said, “Hey Meghan how are you doing?” Then he proceeded to  ask me other questions about how I was feeling. Then the worst part was he took his pen and started poking my arm through the bandages and asking, “does this hurt?” every time he poked it which was about 30 times! Now my dad says to be gracious and understanding because he was only starting and was just learning how to be a doctor but, I'm sorry, he was just horrendous!

Soon after we returned from my surgery, I started chemotherapy rounds again. It was hard because the chemotherapy slows down the healing process and my arm took a very long time to heal.  A couple months after the surgery I also started physical therapy to rehabilitate my arm. I really liked my physical therapist, but it was hard and frustrating because I couldn’t do a lot of the things that I had been able to do before. I was really happy when I finally got to the point of discontinuing my pain medication for my arm, but it still gets sore sometimes when I use it a lot.

On the 28th of August I went in for my 12th and final round of chemotherapy! My parents and I decided that it would be a good idea to invite anybody who wanted to come visit to have cake and coffee. So on my final dose of chemotherapy most of my family, friends and church congregation came up to see me and have a slice of cake. During this round I was still recovering from other previous rounds and wasn't feeling the best so I ended up going to sleep before the party was over. On the very last part of the dose we all (even the nurses!) counted down the seconds until it was over and then we hugged and cried and sang the doxology together.

Throughout my whole treatment I had to go to a lot of appointments and do certain things. I also had to take a lot of different medicines every day.  At one point I was taking about 30 pills a day plus having 3 different injections that my mom learned to give me at home. I also had to go to the hospital clinic for check-ups once or twice a week so they could monitor my blood counts and make sure the chemotherapy was getting out of my blood system. I also had MRI's, Bone scans, and PET-CT scans throughout the whole period so they could keep an eye on the tumor and make sure the cancer didn’t spread anywhere else in my body. When we went up to clinic sometimes they would need to do some blood transfusions of either red blood cells or platelets. Also, if my white blood cell count was low I would need to do Neupogen injections every night at home. After each chemotherapy round they would send me home on IV fluids for a few days. We had to learn how to hook up the home IV pump and flush and de-access my port. There was also this other thing called pentamidine treatments that were just awful! You would go in and there would be a mask that you put over your face to breathe medicine into your lungs that tasted really bad!

Eight days after my last chemotherapy round I started running a fever. Now this is pretty typical for patients after a chemotherapy round because your blood counts drop really low and your immune system is shot, but I luckily had never had it before. One of the rules that the children's hospital has is that if you have a fever of 101.5 degrees or higher, you have to get admitted right away through the Emergency Room (this is referred to as a F & N Admit - Fever & Neutropenia). During the night my fever got that high so we drove over to the ER and were admitted. While I was down in the ER they started a high dose antibiotic through my port. This medicine made me really itchy. The whole time I was there I was really out of it but I do remember very well that they told me I was having an allergic reaction and I started freaking out because the Methotrexate reaction was very serious and if they hadn't put me on dialysis right away I could have died. Then they explained this was just a minor reaction (not like the Methotrexate reaction) and that it was nothing to worry about.

While I was in the hospital for a few days because of the fever, Ethan McGraw, another boy from our school that had a type of brain cancer called Medulloblastoma was having a celebration of life party that I couldn't go to because I was in the hospital. Ethan was a really good friend because he knew how it felt to have cancer and he was the one that really knew how to support me through it. Ethan was having this celebration of life party because his brain tumor had come back for the 5th time and they couldn't cure it, so he was going to die. They decided to just stop treatment because they would rather have him at home before it happened than proceed with treatment that wouldn't cure it. I was very upset that I couldn't go to the party but he ended up being admitted two doors down from me the next day. After the first night he stopped responding to anyone and couldn't move or talk. My mom went to his room a few times and then to go say good bye to him when they realized that he didn’t have much longer to live. She asked me if I wanted to go say good bye but I said no. You may think that it was mean not to say goodbye, but to see Ethan, my wild, upbeat friend, lying in a hospital bed motionless would be one of the hardest things to do. I wanted to remember him as I knew him - ready to kick  cancer’s butt with a smile.

When my mom came back in the room and told me that Ethan had finally gone to heaven, I cried the rest of the day without stopping. Knowing that I had lost not just a friend but a person who, more than I, knew what it meant to have cancer, was very hard. When I got out of the hospital we went to his funeral. At school they handed out ribbons to wear to the funeral and anybody who wanted to could leave school early to go. A lot of my friends went and looked up in the casket but I decided not to because like I said, I wanted to remember him full of life and smiling. I cried through the whole service and when they took his body out of the sanctuary my family and I left.

There were a lot of terrible things throughout this whole past year but there were also some fun things that we got to do that helped me remember that all the yucky stuff would go away soon. Now don't get me wrong, I wouldn't do all of this cancer stuff again just to do some fun things, but the fun things were really nice to have while going through treatment. Some things that my family and I got to do were Gilda's Club (a place with lots of activities and groups that was built for families that are living with cancer), Whitecaps games, American Cancer Society Relay for Life, yaht outing, We Do Care (an organization that gives gifts to children with cancer - they gave our family a Wii), Gilda's golf outing dinner, Wood TV 8 interview, Stand Up To Cancer, and our Make-a- Wish trip to Disney World!

October 2nd, the day after my 12th birthday, they declared me to be in remission! Remission means that there is no more cancer in my body and that it is okay to go back to the way things were before as much as possible. I got to try out for Volleyball at school and made the B team and my hair started growing back! This past year was really hard for me and all the people who love me but God has been so gracious and merciful to me and my family. He saved my life, gave me a wonderful example which was Ethan, and He gave me deeper faith. He showed me that He can do anything and that I need to trust in Him. There were times throughout this trial that I thought I wasn't going to make it or wanted to give up and quit but God showed me that He will carry me through it and I'll come out when and where I am supposed to. This whole experience has brought me deeper into my faith and humbled me so much, and though I wish God had chosen another way to do it, I am eternally grateful for His love and mercy.

4 weeks isn't "soon" apparently...

So... for those of you who check in here regularly, I owe you all an apology.  I promised at the conclusion of my last post that I would be back "soon" to fill you in on our wonderful trip to Florida.  And now I see (and have been gently {throat clear} reminded) that 4 weeks (4 WEEKS!!!) have somehow mysteriously transpired since that fateful promise...  I have to admit that as much as I want to share all the lovely details of our trip, I am a tad bit overwhelmed at the sheer volume of information and quantity of photos to sort through.  It is coming... really.

In the meantime, I do also want to catch you up on the current medical happenings and family updates of late.  (These will be separate posts in the next day or two.)

But at the moment I am most eager to share something special from Meghan herself...  and no, I will not leave you hanging... I will be putting up a subsequent post immediately following this one! 

back to reality...

We returned last night (Sunday) from Meghan's Make-A-Wish Trip to DisneyWorld.  It was truly a magical, exciting, overwhelming, over-the-top, exhausting, sensory overloading, incredible, once-in-a-lifetime, amazing event for our family.  We were unbelievably spoiled and are so incredibly grateful for the extreme generosity of Make-A-Wish and Give Kids the World (and all their donors) and for the blessing that this time together as a family was!

Michael has just left to bring the children to school this morning and as I sit here I can't believe how very QUIET (and COLD) it is.  I'm pretty sure I could sleep for three days continuously (you know that whole "needing a vacation from your vacation" thing).  Alas, the unpacking, laundry, grocery shopping, bill-paying, etc.. are beckoning me.  The brief respite of sun-soaked, fun-filled days  are but a memory now... (yes, I realize I'm getting a bit dramatic - that's what Disney does to you, lol!)  I also just realized that I have to make dinner for the first time in 6 days tonight (that whole no cooking or cleaning up the kitchen aspect of vacation is truly delightful, is it not?). 

I am very excited to show you photos and tell you all about it but right at this moment I am a little overwhelmed at the idea of trying to put into words the experience that we had.  I think I will let my thoughts and feelings about it marinate for a bit.  I will, however, leave you with a little "teaser" photo and a promise to share more very SOON....

i saw what i saw...

I have been a big fan of Sara Groves for many years.  Her lovely voice and compositions are paired with lyrics that are always so insightful.  Her music has ministered to me on many occasions through many joys and trials.  Recently at work I was listening to her CD, "Tell Me What You Know" and the song, "I Saw What I Saw" came on.  Sara wrote this moving song as a response to a trip she took to Rwanda (youtube clip below).  But on this particular evening I heard that song in a whole different light.  I literally wept as I went through a mental slideshow of all the children we have met (and those we have said goodbye to) throughout this journey.  So to Ethan, Sophia, Zac, Rachel, Hannah, Anthony, Shoshanna, Ted, Jon, Shelley, Max, Ashley, Alissa, Devon, Jose, Paige, Ashlyn, Rosie, Braeden, Luci, Alanna, R.J, Iva, Matthew, Asa, Alexis, and many more faces seared into my memory... and of course to Meghan, precious Meghan...

I Saw What I Saw 

I saw what I saw and I can't forget it
I heard what I heard and I can't go back
I know what I know and I can't deny it

Something on the road, cut me to the soul

Your pain has changed me
your dream inspires
your face a memory
your hope a fire
your courage asks me what I am afraid of
and what I know of love

we've done what we've done and we can't erase it
we are what we are and it's more than enough
we have what we have but it's no substitution
 
Something on the road, cut me to the soul
 
Your pain has changed me
your dream inspires
your face a memory
your hope a fire
your courage asks me what I am made of
and what I know of love.
 
I say what I say with no hesitation
I have what I have but I'm giving it up
I do what I do with deep conviction

Something on the road, cut me to the soul
 
Your pain has changed me
your dreams inspire
your face a memory
your hope a fire
your pain has changed me
your dream inspires
your face a memory
your hope a fire

your courage asks me
what I am afraid of
your courage asks me
what I am made of
your courage asks me
what I am afraid of
and what I know of love

and what I know of God.

tears...

This little beauty named Sophia passed away this morning. 
I have never met her or her parents, just followed their
carepage as Sophia battled a malignant brain tumor. 
My heart aches for them tonight as they have said
goodbye to their sweet little girl. 

Please keep this family in your prayers!

"Weeping may remain for a night,
but rejoicing comes in the morning."
Psalm 30:5b 

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.

we wish you a merry christmas...

This year's Christmas card/Thank you letter...

A Note from Meghan:

I just want to say thank you to everyone who has prayed and supported me this past year. 
God has truly blessed me with amazing, wonderful people around me. 

Thank You!

Love,
Meghan

DECEMBER 19, 2008

Dear friends and family, 

As I sat down to write this letter to include with our Christmas cards, I realized that on this date one year ago we received Meghan’s official diagnosis of cancer.  What a year it has been!  Our desire was to write a “thank you” letter with our card that would encompass all the gratitude we feel for the many blessings of this past year, but as I sit now and reflect I am aware that a simple letter could not even begin to scratch the surface.  It is simply overwhelming. 
How can we even begin to thank all those involved in blessing us and walking alongside us through this past year? 

Through all of you, we have experienced the faithfulness and provision of God.  He blessed us in material, emotional, and spiritual ways through His body of believers.  Our families, church family, extended families, friends, employers, school, hospital staff, highschool classmates, other cancer families, and even strangers whom we never met all prayed, supported, encouraged, cooked, gave, and provided in ways to such an extent that we were often left in complete awe at God’s goodness to us and the love of our family in Christ.  Thank you seems like such an inadequate phrase for what we experienced! 

We praise God for the good news we received in October that Meghan’s cancer is in remission.  The children are all regularly attending school, Michele is back at work part-time, and while it will still take some time to “pick up the pieces” from the past year, we are very much enjoying the simple things of life like family dinners, reading & snuggling together, playing in the snow, going to church as a family - even  cooking, cleaning, and helping with homework (wow - did I really just write that?)!  Meghan is continuing with physical therapy 2 times a week as well as periodic clinic visits.  She will undergo scans every 3 months for this first year off treatment (the second year it goes to every 4 months, third year every six, etc..).  The next set of scans is scheduled for mid-January.  Please join us in praying for clear scans! 
Feel free to check in on us anytime as we will continue to update the blog periodically.

We are looking forward in faith and while tomorrow remains unknown to us, we rest in the knowledge that it is sovereignly controlled by our loving and merciful God.  I often think of Hebrews 10:23 “Let us hold unswervingly to the hope we profess, for he who promised is faithful.”  This is our prayer for the coming year, no matter what it may hold for us.  We do have some wonderful and exciting things to look forward to in 2009... Meghan’s Make-A-Wish trip to Disneyworld has been scheduled for February (could there possibly be a better month to leave Michigan?  I think not!) and in August we are expecting a special addition to our family!  Lauren and Eric recently announced that they are expecting (Lauren’s due date is August 11, which is their 2nd anniversary) so Michael and I will be grandparents and Meghan, Rileigh, and Aidan will be aunts and uncle! 

We pray that you all experience the peace and love of God during this blessed holiday season and throughout
the coming year.  We are forever grateful for all the acts of love, kindness, and sacrifice you made on our behalf. 
To God be the glory! 

Much Love,
The Haan Family

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

The photos used on our cards were taken by my amazing friend Terri this past fall (others previously posted here and here).  We kept the "baldies" photos a secret to use on our Christmas cards.  Here are the "outtakes" from those pics...

 

 

the gift of gifts...

O Source of all good,
    What shall I render to thee for the gift of gifts,
        thine own dear Son, begotten, not created,
        my Redeemer, proxy, surety, substitute,
        his self-emptying incomprehensible,
        his infinity of love beyond the heart's grasp.
    Herein is wonder of wonders:
        he came below to raise me above,
        was born like me that I might become like him.
    Herein is love:
        when I cannot rise to him he draws near on wings of grace,
        to raise me to himself.
    Herein is power:
        when Deity and humanity were infinitely apart
        he united them in indissoluble unity,
        the uncreated and the created.
    Herein is wisdom:
        when I was undone, with no will to return to him,
        and no intellect to devise recovery,
        he came, God-incarnate, to save me to the uttermost,
        as man to die my death,
        to shed satisfying blood on my behalf,
        to work out a perfect righteousness for me.
    O God, take me in spirit to the watchful shepherds,
            and enlarge my mind;
        let me hear good tidings of great joy,
            and hearing, believe, rejoice, praise, adore,
            my conscience bathed in an ocean of repose,
            my eyes uplifted to a reconciled Father;
        place me with ox, ass, camel, goat,
            to look with them upon my Redeemer's face,
            and in him account myself delivered from sin;
        let me with Simeon clasp the new-born child to my heart,
            embrace him with undying faith,
            exulting that he is mine and I am his.
    In him thou hast given me so much
        that heaven can give no more.

- taken from The Valley of Vision (A Collection of Puritan Prayers & Devotions)

amazing kids (part 1)...

I would like to do a few posts to highlight some of the amazing kids (and their families) who we have had the privilege of walking alongside this past year.  One of these awesome families is the Fredricks.  They have a twelve year old son named Zac who was diagnosed with medulloblastoma (brain tumor) in October 2007.  We follow his carepage (ZacZone) and have enjoyed seeing and visiting Zac and his mom, Erika, up in clinic.  Sometimes Zac updates his own carepage and he has such a great sense of humor.  He often signs his notes, "from your favorite sick kid."  (I have pasted a recent update below.  **Note to Zac - you ARE one of our favorite sick kids, but soon we hope you'll be one of our favorite healthy kids!**)  Please join us in praying for the Fredrick family and for Zac's full and complete healing. 

What I'm Thankful for.....

Posted Nov 26, 2008 12:24pm

Dear Healthy people,

Monday night I got a temperature and with a port that means I need to come to Grand Rapids to the ER. They are planning for me to stay here for Thanksgiving.
But I'm thankful for being at the hospital and getting better! But my mom and dad tell me that this Thanksgiving might not be what I'm used to but at least we will be together, that's sounds like an Oprah moment. But when you have been doing this for fourteen months you just want things back to normal. And you call being in the hospital eating hospital turkey normal? I don't think so.

Now sense I whined enough already, how about the five things I'm most thankful for....
1. I'm thankful for being as close to God as I am.
2. I'm thankful for having a great family.
3. Getting the support from you Zaczone viewers.
4. Having teachers that understand what I'm going through and give me extra support.
5. Last but not least I'm thankful for having good restaurants that have take out near this dang hospital.
I have more things to be thankful for but that's for another time.

Everyone have a happy holiday and no financial problems when you go Christmas shopping.

From your favorite kid in the hospital on Thanksgiving,
Zac

great family get-togethers...

Lands End recently had a contest asking entrants to write a 300 (or less) word essay about their most memorable family get-together.  I struggled to whittle down my thoughts to less than 300 words, but finally submitted the following this past October (which incidentally did NOT win)...

So many wonderful memories come to mind as I reflect on 38 years of life, 20+ years of marriage, and 5 wonderful children.  Should I write about camping trips?  Family reunions?  The wedding day of my oldest daughter?  Or should I take a risk and go with what my heart is telling me?...  an unconventional choice that is probably not the story you have in mind for winning a contest.  You see my perspective shifted drastically last year when my 11 year-old daughter, Meghan, was diagnosed with osteosarcoma (bone cancer).  So my pick for “most memorable family get together?”  Time spent bedside in the hospital through her year-long intensive chemotherapy treatments and surgeries.  There is a lot of joy and laughter to be found in life... even in a hospital pediatric oncology unit (maybe especially in a hospital pediatric oncology unit).  Despite the many difficult and heart-wrenching moments we faced, this experience truly sweetened every aspect of our life together as a family.  Never before have we so deeply cherished and savored every single moment we are blessed with together.  When Meghan received her final round of chemo we filled the hospital room with loved ones and counted down the final moments.  We cried, laughed, cheered, sang and embraced.  The room was filled with a deeply intense joy and overflowing love that was more precious than all the vacations, holidays, and reunions we've had.  Just this month Meghan was officially declared in remission and we are looking toward the future with hope and a new appreciation for all the small and wondrous gifts and moments we are given.  We are choosing not to wait for a "most memorable family get together," but rather to make sure every day holds sweet moments and time spent cherishing one another. 

P.S.  You can read the WINNING essays here.

my mother's thanksgiving testimony...

Meghan with my mom and dad at the American Cancer Society's Relay for Life - June 2008

You will recall from my last post that my mother also gave a thanksgiving testimony at our Annual Thanksgiving Service.  I am sharing it below...

How does one even begin to put into words the thanksgiving in our hearts for the blessings of this past year?  What a year it has been!  As almost all of you know, just before Christmas last year we received the heartbreaking news that one of our beloved granddaughters had cancer.  It is rather easy to say, "Be thankful in all things."  But how does one praise God for the life-threatening illness of a deeply loved child or grandchild?  Yet we have had SO MANY occasions this past year to give God praise:  first and foremost, for the hope we have in him, for the knowledge that he is in control, and that he knows what he is doing, even when we do not understand.  Then also we gave God praise for the goodness and kindness of his people here at Harvest.  We were absolutely overwhelmed with the response of Harvest to a couple of guys (Brian Sytsma and Tim Dood) who called around and accumulated enough money to buy a van for Michael and Michele after theirs burned up.  Thank you from the bottom of our hearts.  You'll never know how much of a blessing that was.  During these past months, I have become much more acutely aware of how extremely difficult it would be to give up a beloved child or grandchild.  It served to show me in a new way what it meant for God to give up his Son--the Son whom he loved.  How could he willingly give up his own Son?  And to do it for me?  for us?  Think of what that must have meant.  It must have given Him profound pain and heart-rending anguish to see his beloved Son suffer as he did.  What amazing love!  Looking ahead, we remember Paul's words in Rom. 8:  "He who did not spare his own Son, but gave him up for us all--how will he not also along with him, graciously give us all things?" 

Thanks be to God for his indescribable gift!

thanksgiving...

We had a wonderful, moving Thanksgiving service at church last night.  It is an annual tradition at our church to meet the evening before Thanksgiving and lift our praises in song, testimony, and hearing of the Word.  Pastor Dale had an excellent meditation.  (I am hoping that it was recorded so that I can post a link here soon.)  My mother gave a beautiful testimony of thanksgiving to God and Meghan (who had previously told me she didn't want to speak in front of church) surprised us all and gave a truly moving and heartfelt testimony about what this last year has meant to her.  She spoke off the top of her head and from her heart and it was such a great testament to the work of the Holy Spirit and God's grace in her life.  Praise the Lord!!  (Unfortunately because she didn't have it written down I can't share it here with you but I am hoping that it was recorded as well.)  I also wrote a testimony that I shared during the service which I will share here...

I’m sure it is not surprising to any of you that I would choose to write a testimony of thanksgiving this year. It has been abundantly clear throughout this past year that our family has much to be thankful for. Last year at this service we sat here blissfully unaware of what was approaching.  We had no idea at that time that an aggressive, deadly cancer was growing in Meghan's arm.  One week from tomorrow (Thanksgiving Day) marks the one year anniversary of a routine doctor’s appointment that literally changed our lives. An appointment that set into motion a year of uncertainty, struggle, pain, and many tears. But also a year of numerous blessings, deep joy, abiding love, and a deeper understanding of who we are in Christ. No one wants to hear the news that your child has cancer. No one wants to see their precious child suffer or see their other children cope with things beyond their understanding. We don't claim to fully understand why our family was called to walk through this particular trial but we can testify to God’s unwavering faithfulness to us through it all. Among the many things I am grateful for this year are ...

• the fact that Meghan is sitting here with us tonight because the Lord saw fit to grant her more time on earth with us.  Her cancer is in remission and she is moving forward with much hope for the future.
• my wonderful husband of 20 years who steadfastly led us through the past year with His eyes constantly fixed on Jesus (and as a side note had an amazing ability to keep us all laughing even when our hearts were breaking).
• my children  - Meghan whose courageous and positive spirit taught me so much this past year about trusting God in the darkest of times, and Eric, Lauren, Rileigh, and Aidan who rallied around their sister and each other and in the process learned so much about selflessness and compassion.   
• our extended family, particularly our parents, who have been a great support and encouragement in word and deed.
• a gracious and generous church family here at Harvest that has enveloped us in love and support and was used by God to provide for us in incredible ways.
• the power of prayer and the amazing family of believers around the world (literally, around the world!) that lifted up prayers and petitions for us.
• the excellent medical staff and facilities we are blessed with right here in GR.
• our employers who were supportive, understanding, and flexible.            
• the many awesome children and families that we got to know and love and walk alongside up on the oncology unit.  We were given opportunities to look beyond ourselves and our circumstances and reach out to others.
• God's precious Word - what a wondrous gift that has given to us to lead and sustain us through all of life!
• the overwhelming sense of peace God granted to us.  Michael often reminded me that no matter what the outcome, Meghan would be healed.  I am grateful that for now He chose to do that here on earth but I am more grateful that through Christ not only Meghan but all of us who believe will be healed eternally.
• and the list could go on and on.  Even the small blessings of every day - the laughter, beauty, and joy in life's details that have become more cherished and recognized through this experience.

But amidst trying to put into words the gratitude I feel (which is completely overwhelming)  I have to stop and ask myself the question - what if the outcome had been different? What if the outcome in the future is different? Would I still be able to stand before you with a sincerely grateful heart?  1 Thessalonians 5:18 says, "In everything [everything!!] give thanks; for this is God's will for you in Christ Jesus."  It is only by God's grace that we can do this.  So really at the core - that is what I am the most thankful for this year - His grace and mercy to me, a sinner.  He has shown me that in my weakness, He is strong.  In my doubt, He is faithful.  In moments of turbulence, He is peace.  Amidst uncertainty and unknowns, He is sovereign and unchanging.  How blessed we are to rest in the hands of the Almighty - to be sheltered under His wings.  And this not because of anything we have done but because of what Christ has done on our behalf!  This year my heart truly thrills to say to you, along with the psalmist in Psalm 34:3, "Glorify the Lord with me, let us exalt His name together."  

Wishing you all a blessed Thanksgiving
filled with gratitude and praise to God!

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)