Eighteen Months and Counting

Benjamin is looking good and cancer free!  Yesterday we spent the day in STL.  Last week Benjamin had his chest CT here in town, then he had his MRI of his knee yesterday.  Dr. G prefers to work closely with the radiologists at SLU, so for that reason and for consistency we will continue with the MRIs there.  The reports were clear!  We have been so blessed by Dr. G. and his staff.  They are wonderful.

We will return in six more months for the same routine again.  After year two is clear, then we will decide whether to continue with every six months or move to yearly follow-ups.  Because Benjamin's cancer is so rare (and a rare mutation of that) there isn't much research or protocol to follow.  In some regards we are confident that it won't return, but due to some treatment in the early stages of Benjamin's diagnosis we have reason to be concerned.  A couple of studies have shown that up to 60% of patients have had recurrence and metastasis in the chest.  Those recurrences have been 5-20 years later.  Ugh.  We have known that we are in this for the long haul, but each clear follow-up is definitely reason to celebrate.  We give God the glory for what has taken place so far.

The last couple of years have been rewarding to watch Benjamin grow and mature.  He has handled all of this with such ease and "coolness" and an amazing attitude.  We are so proud of him.  Speaking of growing...we had the nurse measure my height after Benjamin's.  It's official, he's finally taller than Mom!

One Year Ago....

...Chris and I were sitting in the surgical waiting area of a children's hospital in STL.  Our Benjamin was in the middle of having a cancerous tumor removed from the back of his knee.  We were being covered with SO much prayer.  Soon Dr. G. came to us with the best news ever.  The tumor had literally peeled right off the nerve, in one complete mass, with a very clear margin.  There was no damage to the surrounding tissue or nerve, the mass was out.  GONE! 

We had a few ups and downs after that, initially fairly confident that the mass was benign, but later we received the devastating news that it was cancerous.  It was such a rare form of cancer, that really only a couple of other cases had ever been reported.  Our one-in-a-billion kid felt a tad special, yet in many respects it's not that great to be so rare. 

This last year has been one of continued steps of faith and trusting in His care for Benjamin.  We have rejoiced after each of his 3-month check-ups that have showed clear results.  We are so very thankful for the wonderful care that has been available to us, for the many prayers that have been offered on our family's behalf, and for the "normal" lifestyle that Benjamin has been able to lead.  He is beating cancer and we are hopeful that this cancer will never return.

It's easy to forget what we faced a year ago, but I never want to forget and take for granted a single day.  Each day is a blessing, and for that we are forever grateful!

Looking Good!

We left early yesterday morning on another two-hour trek to STL.  Up first was Benjamin's MRI.  He is always such a trooper with these....lying still for an hour with a needle poked into you is no fun.  There is no TV, no games, no music, no moving...just the whir of the machine and contrast being pumped through your body.  The one good thing about yesterday's MRI to Benjamin was that he didn't have to wear a hairnet this time.  :)  I have no idea why they've had him wear them every other time, but at least this made him smile.  Another thing that made him smile was knowing that while he was feeling like he was being sucked into some other time portal, his siblings were out with Dad picking up some goodies on "The Hill", STL's Italian neighborhood.  

Oh, there was even more yumminess than what's shown in this picture.  Some had already been eaten, and we did get a nice tray of goodies to take to Benjamin's amazing oncologist and staff. 

After the MRI we had a visit with the oncologist where we were given a great report!  The chest CT and MRI of Benjamin's knee did not show anything of concern.  His leg looks great and we are clear for 6 months this time.  Yay!!  It's hard not to get a bit anxious before each of these appointments.  The relief afterwards for this momma is great...probably more tears shed afterwards than before.  Thank you, Father, for another good report. 

So, as is our custom, we try to do something fun each time we're in the city after the visits with doctors and hospitals.  I dropped Chris and the younger four off at the Magic House, a great hands-on children's museum, then Michaela and I did some Christmas shopping at a HUGE mall.  Great fun for all!

Something else that has become somewhat of a tradition is a meal at Chick-fil-A.  It's greasy fast food, but the kids love it, and we don't have one in our town.  So after supporting life for cows, we headed to historic St. Charles.  Their historic main street is full of lights, carolers, Charles Dicken's characters, chestnuts roasting on an open fire, and shops to duck in and out of.  We enjoyed great temperatures and strolling along the streets.  The kids collected "business cards" from the characters that we saw, we even wished Scrooge a Happy Christmas.  Fun memories being made, mixing the joy of family time with the celebration of beating cancer!

Check-up Week

It's that time again, time for Benjamin's week of check-ups.  We had his CT scan of his chest done yesterday.  It's pretty quick and painless and we have that done locally.  I always ask him to sit by Truman the Tiger for a picture at the entrance to the children's hospital and he finally obliged yesterday.  No, he's not much of a child anymore and had to squish to sit with Truman's arm around him, but I appreciate Benjamin's good-natured attitude.  It's really a reflection of how he has handled all of this last year with cancer.  We love you, Buddy, and are very proud of the you and the maturity with which you had gone through all of the pokes, prods, scans, appointments, miles on the road, etc. 

On Friday we will head to STL for his MRI and visit with the oncologist.  We are praying for continued clear results!

Decorating

It's that time of the year, and the kids had already been begging since before Thanksgiving to get out the Christmas decorations.  The boys' room was very quickly transformed after our Thanksgiving guests left....they have their own style and decorations that they've collected.  I must get pictures. 

This weekend we got out our family decorations and put up the tree.  If you remember our dilemma from last year....well, this is our second year with the "life like" tree.  Michaela added a nice touch and bought a Christmas tree scented candle that really does add some essence to the room.  Somehow it's still not the same as going to the tree farm and all that ensues with that adventure .  

So, things are feeling more festive around here.  With Christmas lights, nativity scenes, Christmas music, and candles it feels like December, although some of us wore shorts yesterday!  I'm desiring to keep things a bit more simple this year, as the materialism and "stuff" of Christmas does not attract me.  With many others in need, it's hard to bring myself to want to buy much. 

I'm also remembering how things were around our house just a year ago.  We had so much uncertainty with Benjamin's cancer and upcoming surgery.  Putting up Christmas decorations at that time was a welcome distraction.  This last year has taught me much, and I have become all the more aware of the importance of family and loved ones and not taking for granted the gift of time. 

Check-ups

It's that time of year when all five kids get to visit Dr. Holly.  It has been a year since they were all there last, which means they've had a healthy year.  Yea!  But wait, it was a year ago that Dr. Holly sent Benjamin on to see the orthopedic doctor that started our walk with cancer.  So we've had more than enough doctor's visits this last year, but other than cancer (!), the kids are all super healthy.  We are so thankful.  The biggest news is that Benjamin only has another 1/2" to catch up to Michaela and another 1 1/2" to catch up to me.  :)  He has definitely had a growth spurt this year.

No, I don't take pictures everywhere we go, but it was too funny to see them all lined up by age to get weighed and measured.  And no, they didn't all share one room, the girls were given their privacy!

Six Month Check-up

Yesterday was another trip to STL.  Our main mission was to get Benjamin's 6-month post-tumor removal MRI done and visit with the oncologist.  We headed out before 7:30 am and didn't get home until 9 pm, so it was a long day. 

First things first, all is well!  CT from earlier in the week was clear, MRI from yesterday was clear, and our awesome oncologist felt nothing physically on the back of Benjamin's leg where the original tumor had been.  We had not expected to find anything, but the possibility is always there, so the emotional toll on momma's heart each time we go for check-ups is big. 

Chris is out of town, so that added a bit to my stress yesterday, but the kids were super.  They had to wait about 3 hours while Benjamin had his MRI, then visit with the doc.  I don't envy Benjamin either.  For the hour long MRI he is in an tiny room (although open MRI), having to lay perfectly still, wearing headphones to try to help block out the jackhammer sounds from the machine, getting poked with needles, and to add insult to injury, he has to wear a hair net.  At least he's used to the hair net part from volunteering at the Food Bank.  :)  He was an awesome trooper though and I'm proud of his maturity in handling all of this cancer stuff. 

Our next visit won't be until December, when Benjamin gets another CT and MRI.  That will mark one year since surgery.  If all is still clear then, we'll likely go to 6 month check-ups for year 2. 

We always make an adventure of going to STL.  There is so much to do there and there are a lot of free places that are great for families.  One place that we hadn't visited in several years is Grant's Farm.  It's an old homestead of President Grant's.  (Notice I didn't try to spell his first name.)  They've turned it into somewhat of an open zoo where you ride a tram around and see lots of animals.  There are farm animals and a few exotic animals.  It's owned by Busch, so of course there is a beer garden and you get to see the famous Clydesdale horses, too.  :)

Grant's cabin

The water misters were a highlight at the Farm.  It was a typically hot and humid day, so they felt great.

This bird was hilarious.  The kids talked to it for a long time and it talked back and repeated quite a bit.  Then we would all laugh and it would laugh right back, so it became this hilarious cycle of laughter.  So funny!

Petting the goats....some were more interested than others!

This was one HUGE tortoise.  

One of our all time favorite pictures of Benjamin was taken here, almost 13 years ago to the day.  It's one of the framed pictures on our wall collage.  He was about to turn one and was our climber.  Had to get a repeat.  Ha!

To top things off we had dinner at CFA, a rare treat for us since we don't have one in town.  

(Just noticed Ami's thumb.  Cute!)

We were all wiped out when we got home.  Momma was happily relieved with the good report and relieved that we all arrived back in one piece.  Michaela was happy to finish up the rest of her required daytime driving hours and to get a bit of night-time requirement in.  Benjamin was happy to be out of the hairnet and said, "My life is complete," after CFA.  Elijah, Johanna, and Ami were excited to have had soda twice during the day.  Thank you, Lord, for clear reports.  Thank you, thank you, thank you!