Sunday, January 21, 2018

It's A God Thing

I am forever amazed that, even when we don't anticipate it or realize it's happening, God has his hand in all things.  I'm convinced of it now more than ever.  And I'll tell you why although it's going to take me a couple pages . . .  so bear with me.

I am painfully aware that it has been months and months since I've updated MacKale's blog with a post about where we are at...  I think to some extent I have been avoiding the painful reality that we didn't have a plan.  When we left the hospital in May, we were just delighted that what they were seeing on MacKale's leg wasn't osteosarcoma.  Since that time though, it has became very evident that 'something' had to be done for that leg.  He had gone from losing his crutches because he didn't need them anymore, to becoming completely dependent on them. The problem was we had no idea what that "something" was that we needed to do to get him mobile and walking again.

Dr. Post, MacKale's surgeon, sent us home in May after the biopsy and told Mac to enjoy his summer, and we would talk about surgery in September.  And that's just what he did.  He golfed, he biked,  he played, traveled and camped the best he could on a bum leg and crutches.  Unfortunately, that leg, despite copious hours of PT, only weakened and the bone continued to erode.

After we were able to meet with Dr. Post in September, we were confident that we had a good plan.  We were told that MacKale was a candidate for a full knee replacement with a device that would magnetically lengthen his leg as he grew.  It was a huge relief to all of us to have a plan and one we felt good about.  We would meet with Dr. Post again in October to plan the when and how.

However, when we met with doctors in October, we were told that, in fact, the extending prosthetic would not work for MacKale. He needed to proceed with an adult knee replacement and the growth plates in both legs would need to be shut off.  I'm not sure if it's because we were thrown a curve ball so unexpectedly or if it's because we are such a vertically challenged family, but the idea of stopping the growth in MacKale's legs was a hard pill to swallow.  It just didn't sit well with any of us.  There was definitely a dark cloud over our family during that time.  Looking back, it's ridiculous really . . .  I mean, so what!  He would lose a couple of inches in growth. I know it made no sense, but it just felt like " . . . and he gets to deal with this too?  Come on, give the poor kid a break." But what choice did we have?  We would meet with Dr. Post in December to schedule the surgery and move forward with the procedure.

In the meantime, while we waited for our December appointment, we received notice that MacKale's surgeon, Dr. Post, had resigned his position.  BOOM!  Suddenly we felt very alone and unsure of what would come next.  We were all very fond of MacKale's surgeon.  Dr. Post is a skilled and well-loved doctor, and the thought of proceeding without his guidance was a bit daunting.  I remember looking at Mike and Mac when I heard the news and we all felt like . . . "you've got to be kidding me?  Now what?"

Two days later, we were in Grand Rapids meeting with Dr. Post's partner, Dr. Steensma, our oncologist Dr. Mitchell and MacKale's beloved PA, Anne.   Looking back, this meeting was a pivotal point in our journey to where we are today because it was that team, MacKale's team of doctors, that encouraged us to pursue a second opinion elsewhere.  They didn't have to.  They could have steered us in one direction or the other, but they did what good doctors do.   It kind of gave us the permission to step back, re-evaluate and start over.  Dr. Steensma graciously offered to help us in whatever direction we cared to take, but he was the one that told us, now is a good time to hear from other doctors who may have more experience with MacKale's situation of a cadaver bone eroding.  He wanted us to be comfortable, happy and at peace with whatever decision we made.   He directed us to Boston's Children's hospital.

In Boston, we met with Dr. Megan Anderson.  She was awesome!  She was patient and took all kinds of time with answering our questions and even answered all my follow up emails.  Dr. Anderson indicated that MacKale was, in fact, a candidate for the expanding prosthetic!  He was also a candidate for an adult knee replacement, rotationplasty or amputation.   If we chose the expanding prosthetic though, there would other surgeries he would need, and it did have limitations.  Whatever we decided, she was willing to help us and do his surgery.  But, while we really liked Dr. Anderson, we left Boston not really feeling like we were any closer to a decision than we had been before.  In fact, she had opened up other possibilities that we had thought were closed to us.   We didn't think the Stanmore expanding prosthetic would be possible, but it was.  However unlike what we had been told before, with it, MacKale would not be able to ski!  That was a bit of a game changer.  No skiing was not negotiable.

Dr. Anderson suggested that we confer with doctors at the U of M who could also do any of the surgeries she had mentioned.  So, after Christmas, we headed to the U of M.  But even after that visit, we just didn't feel like we were any closer to a decision.  My brother Tim told me, you just aren't "there" yet.  And he was right.  We hadn't heard the right words come out of the right mouth.  We kept searching...

Mike, Mac and I had been googling and you tubing and searching the internet for anything we could get our hands on regarding rotationplasty and amputation.  The doctors' visits may have not brought us to a decision, but it did eliminate one possibility in MacKale's mind.  He was no longer interested in saving his leg.  He was tired of hearing all the things he couldn't do with limb salvage.  He was ready to be mobile, to be athletic, to play and get on with his life.    We were able to meet via phone, facetime and skype some incredible people that opened the world of amputation and rotationplasty up to MacKale.  Jason, in Texas is an above knee amputee who chose amputation after a failed limb salvage surgery.  Sean lives in Wisconsin and is the same age as Mac.  He had osteosarcoma and chose rotationplasty.  Sarah is an above the knee amputee osteosarcoma survivor from Benton Harbor.   They all shared their stories and their experiences with MacKale.  They all helped narrow the decision for MacKale.  What we needed to know now was if rotationplasty was even an option and, if not, should we pursue above the knee or thru the knee amputation.

And then I remembered a lunch meeting that Mike and I had last summer with one of the owners from the condos he used to run. Ed and Sarah Dean are God-fearing, faith-filled people who we met when Mike was running the Sunset Shores Condos.   It's a funny coincidence actually.   The Deans used to live in Cadillac many years ago when Mike and I were in high school, and their son, Tim, was one of our classmates, but they had moved to Florida before we graduated and then decided after many years to return to Cadillac and vacation at the condos where Mike worked.  At the time we were meeting with them, they asked us about Mac and we relayed how MacKale's leg was eroding and we would need to have surgery that fall.  Ed suggested that we needed to visit Dr. Parker Gibbs at the U of FL.  He was a personal friend to Ed and had performed surgery on his granddaughter as well.  He graciously offered his home and a personal phone call to Dr. Gibbs if needed. We were grateful for the offer and suggestion, but felt that we had everything under control at the time.  I tucked that name in the back of memory and it stayed there...

. . . until Mike and I started devouring everything we could get our hands on regarding rotationplasty and amputations.  I kept seeing this name reappear.  Dr. Parker Gibbs!  He and his partners have a ton of experience with rotationplasty, and I just felt like Mac needed to meet this doctor to either rule rotationplasty in or out.

So, last week, a day after getting clear scans from DeVos,  Mike and MacKale headed to Gainesville.  I am trying to save my sick days for when MacKale will surgery so I stayed home but was able to sit in on the appointment by phone.  It was very evident from the moment that Dr. Gibbs introduced himself that we were 'there.'   In no uncertain terms, he was able to affirm the fact that rotationplasty was a possibility for MacKale, but . . . it wasn't the right surgery for him.  He could do it, but Mac wouldn't be happy with it.  Rotationplasty functions best when the tumor is in the femur.  With the lower leg compromised from the original tumor and surgery, a rotationplasty just wouldn't function as successfully with MacKale as it does with other patients.  And he could do a thru the knee amputation too.  But . . . he felt like MacKale would be back in his office in a couple of years looking to have it revised to an above the knee.  Above the knee, in Dr. Gibbs opinion, would give Mac the best chance for mobility, athletics, independence and no future surgeries.

The End.  Hallelujah.  Amen!  We had our plan . . . above the knee amputation.

When Dr. Gibbs left the room, I asked MacKale, 'how do you feel about all this?" And immediately he responded, "GREAT!"

We are "there."  MacKale is excited about what this new chapter of his life will bring.

I have no doubt that all this is a 'God thing.'  And what I mean by that is, I have no doubt that God has been working behind the scenes . . . during the frustrating hours of wondering where we go next and what we should do . . . God has been working, setting the stage, presenting the right people, at the right time. We are so grateful for the obstacles that he sent our way, because through each of those obstacles we learned something new and it drew us closer to Him and trusting Him.   We are thankful for the amazing patients he sent our way because, with each one we spoke to, it made the idea of amputation less scary and brought us closer to a decision.  And we are thankful for the people who have taken us under their wings and continue to pray for us because your prayers give us strength and make us brave enough to make the tough decisions.   Brave enough so that when we finally heard someone say, 'this is what I think you need to do' it felt right, and we were at peace.

We still have a lot of details to work out  . . . the where and when and who.   And we know that, next to fighting cancer, this will be the hardest thing that MacKale and our family will have ever faced, but we are so confident and at peace with this decision.   It makes it so much easier knowing that we have the prayers and support of all of you and that we have been able to enjoy clear scans.  God continues to bless us beyond measure . . . He continues to work on our behalf and often, unbeknown to us.  It continues to affirm our belief that no matter what, we HAVE to have faith.

It's a God thing!

Oh and as a postscript, I have to thank the Deans, thank you for your incredible support, for opening up your home to Mike and Mac and for spoiling them rotten and your unwavering faith.

Monday, May 8, 2017

9th Floor - Revisited

It's been an excruciatingly long 10 days since our 3 months scans. While Mac had clear lung scans for which I am so grateful, I asked you to pray for the lesion that was showing up on his cadaver bone. We didn't know what it was, and over the course of the last 10 days it has been referred to as erosion, a lesion and a mass . . . we didn't like any of those terms, but the fact remained that we needed to get in there and see what was causing what looked like the bone to erode.
We were initially scheduled to have that biopsy tomorrow, but around noon on Thursday, I got a call from DeVos that they had room for him the next day, Friday. Mike and I hurriedly made arrangements for the 'little boys,' I wrote sub plans and we boot-scooted it to Grand Rapids first thing Friday morning.
Whenever we walk across the bridge to DeVos, the reality of cancer becomes very real to me. All those feelings that made camp in my heart all those days we spent in treatment, they are right there at the bridge waiting to welcome me back. It takes everything in me to keep them at bay and fight back the terror, but one step at a time, we keep walking this journey always knowing we are never alone.
The biopsy itself was pretty straight forward. A radiologist went in with a big ol' needle type instrument and took several samples of the suspect area. Then Mac was sent up to the 9th floor for 2 days of observation to make sure that his bleeding was in check, because, you know, it's not enough to have had osteosarcoma, we have to throw a little hemophilia in there just to make things interesting. Our amazing orthopedic oncology surgeon, Dr. Post, came in on Friday afternoon to check out Mac and give us a bit more information about what exactly they were looking at with the biopsy. He's always been a straight shooter with MacKale. He told him, 'you know MacKale, it could be osteosarcoma, or it could be an infection or something else that was causing the bone to react and erode. Perhaps it's the hardware that was used when the leg was constructed. We don't really know, but we need to rule some things out.'
All we could do now was sit and wait (and pray a lot) for the results which wouldn't be available until the following week. We got our exit ticket from the 9th after two days of visits from friends, non-stop video games,
intermixed with episodes of boredom,
and mass amounts of junk food. We were first on the discharge list on Sunday morning and made it back in time for Mac to even stop and hit a few balls at Katke with his dad on the way home despite the 40 degree weather. Yikes!
Surprisingly, Dr. Mitchell called us tonight to let us know that the pathology reports were, in fact, back and the results show no sign of tumor and as of now, no infection! (Can I get an 'amen.') We still do not know what is causing the erosion, but we are celebrating the fact that it isn't cancer nor an infection. God is SO incredibly good, and we feel so blessed.
Returning to the 9th floor this past weekend . . . egads! That hard stuff friends. A wave of emotions can creep up on you in a moment and catch you completely blind sided. Fear and guilt are very real. Fear of being shoved back into a battle we don't want to fight again. Guilt at watching other kids fighting that battle. I think God sends us back to this floor so we never forget and so we never stop fighting for more funding and more support for Pediatric Cancer and Osteosarcoma. If that's His goal, He's doing a great job at it. This cause has me by the heart and it won't let go.
I find it ironic that today, on my Facebook Memories, the post I did last year on this date . . . the Mother's Day post about faith and a mustard seed came up. I was re-reading that post this afternoon right before Dr. Mitchell called me, and it reminded me, yet again, that my faith doesn't have to be perfect, it doesn't have to be grandiose, it just has to be . . . a little faith will sustain us and make us stronger than before.
As we celebrated over root beer floats tonight and then piled, all five of us, into McCoy's twin-sized bed for prayers, we thanked God for all our blessings and especially for all of you. Thank you for sharing your faith with our family and for continuing to keep us in your prayers.

Wednesday, April 26, 2017

It's that time again . . .

Spring Break Boys at Myrtle Beach
Many days . . . most days it is easy to live a blissfully ignorant life, free of cancer and chemo and all things that have anything to do with osteosarcoma.  I'm happy to say that all of us have gotten very good at it over the last three months. The mundane, daily rituals of family have been glorious.  Boys play, joke, fight, and laugh just like they always have and the noise that comes as part of the package when you host brothers in your home is a sweet reminder to Mike and I that our family is still here . . . working out our new roles and goals, but doing it together!

Mac is back refereeing soccer! 

The busy routines of homework, friends, school, concerts, church, soccer games and all of those things that make our life so delightfully out of control most days, also creates a world where it is easy to forget  . . . And then the three month mark is up and it's back to DeVos . . . back for scans that will tell us the fate of whether we get to continue to bask in the normalcy of our boring, small-town life or whether we will be back in fight mode against the beast.  Back for scans!

On a list of things I despise most in the world, scan day is probably right up there.  It's only redeeming quality it has is that while it can weld a harrowing blow of disappointment, it is also able to deliver the news that gives us a vacation from cancer for three months.  My relationship with scans is definitely a love-hate one.   MacKale doesn't care!  He is delighted to have a day off school.  He wants a thick strawberry shake for lunch and would like to stop by and see his nurses from the 9th floor.  Scans seemly never phase him.

He is an anomaly to me.

I would gladly go to school everyday if it meant we would never have to face the reality of cancer in any way, shape or form.  I would gladly hide away from scans and the hospital and everything uncomfortable that comes with facing a day of scans.

It's the difference in our make up.  It's the difference between his ever optimistic outlook and my 'mother gene.'  Regardless of how I might feel, however, we can't hide from this.  This is the reality we face tomorrow, and it's why I will come to you all again and again, without shame or guilt, to beg for prayers  . . . prayers for peace and wisdom but mostly for scans that show N.E.D (No Evidence of Disease).

Osteosarcoma absolutely stole so much time from us last year, but in many ways, we have been blessed with a clearer vision of what is important and a great appreciation for precious time together.
Laughter and fun are priceless commodities these days. We take greater advantage of long drawn out dinners, we don't always rush that snuggle time before bed, we say 'I love you,' we hug our family and friends, we take the long way home, we don't work quite as hard as we used to . . .  and our nightly prayers take a bit longer than before, because, quite honestly, our blessings are many, and it takes a LONG time to be thankful for everything given to us.  We are genuinely so incredibly blessed. We are together, we are happy, our boys are in school, we have a home and work and everything we desire  . . . everything we could ever hope for, dream of, or wish!  We have it all!  But, despite all of it, of course, we are not perfect . . . and we get scared.  We are afraid! And, quite honestly, that fear robs us.

Because here's the thing . . . unfortunately for too many children with cancer . . . too many of our friends from the 9th floor . . . too many children we care deeply for . . . relapse is a brutal reality.  It is so unfair and horrible and agonizing.  And we desperately pray for our friends who are facing that reality.  We pray that the cancer will leave their young bodies and leave MacKale's and never . . . not ever return.  That's a prayer we can't let go of . . . not ever.

As for me, tomorrow I'm going to make a special effort to take the advice of my friend, John, who promised me he would light a candle for Mackale at the Sant' Agata Cathedrale in Catania, Italy this week.  John knows our journey and walked this same road with his son many years ago.  He told me, "fear is such a terrible thing, the opposite of love, and you want to go with love, in everything. Let that take your anxiety away." '

So this time for scans, I'm going try to be like Mac.  This time around,  I'm going to order the extra thick strawberry shake and love every calorie.   I'm going to 'go with love, in everything.'   I'm going to try . . . really hard.  But I may need a little help . . . so pray for me.

Love you all . . .

Spring Break Myrtle Beach

Thursday, December 15, 2016

The Blessing Of a Double Milestone.

When Mac was four, Mike and I felt pretty comfortable with his hemophilia.  We were confident.  We thought we had it all figured out.  He gets a bleed . . . you take him to the ER and they infuse him with an IV.  Simple.  Mac had gotten really good about sitting still.  Heck, at 3 years old he would even pick out the vein he wanted 'One Shot VanderTuck' (his favorite ER nurse) to use.  So when we walked into his yearly hemophilia clinic after four years of getting comfortable with hemophilia . . . hearing that he would need a port in his chest devastated me.  I didn't expect it.  I was comfortable with the way things were.  I had become complacent.  A port just complicated things.  It created a new world of worry and concern for me and my very predictable life.

But MacKale was becoming more active, he was having more bleeds and we needed to treat him more often to avoid bleeds rather than react to bleeds.  A port would be placed in his chest and Mike and I would need to learn to administer his factor through it.

What!?   I needed to stick a needle into my four year olds chest, and, oh yeah, the port was a direct line to his heart and so you had to be very careful not to screw it up and to maintain sterile environment so there would be no chance of infection ever or it could be life threatening.

I cried!  I mean, I sat right down and I bawled my eyes out.  I was overwhelmed with the thought of dealing with this 'thing' that would be placed in his chest.  I freely admit I am not good with nursing duties, needles, procedures, blood . . . I have always said, Mike is a much better nurse than I and if he ever wanted to leave the resort/real estate industry, that's the career he should head towards.  But for me . . . I was petrified.   The little boys were only 1 and 2 years old and we had a huge doberman . . .

how do you maintain a sterile environment with those dirty buggers running around?  It seemed impossible, improbable . . . but we did it.  Mike did it . . . and even I did it.

I'm not going to say that I ever enjoyed it, but I did became very confident after so many years of using it.  That port provided so much freedom for MacKale and all of us really.  He was able to join in sports . . . he played soccer . . . skied . . . wrestled with his brothers . . . road a bike  . . . all because we could simply infuse him at home whenever he planned to 'play hard.'

We made it very clear to MacKale though that his port was not a long term option.  It was easy and convenient when he was little, but it was a short term solution to a long term reality.  He would need factor for his entire life, but while the port afforded us freedom, it also wasn't something we wanted him to depend on.  Eventually, he needed to learn how to infuse himself by finding his vein and administering his factor.  I wanted this independence for him.  It would provide him even greater freedom.  Freedom from Mike and I . . . to grow up . . . confident and self-sufficient with his hemophilia.

So we put 'self-infusion' in his mind very early in his life.  He started attending over-night hemophilia camp when he was only 6 years old . . .  (I know . . . what on earth was I thinking.  He was just a baby!)  . . . and, of course, he loved it!  He has been every year since. He got to hang with kids who had hemophilia just like him, he had role models and he was able to practice infusing in a safe and nurturing environment.

All that prepping gave him the confidence to 'poke himself' at camp when he was just 8 years old.  It wasn't pretty and it wasn't perfect but he earned his 'butterfly award' and it gave him the will to try it again and again each time he went to camp until last summer, when he was 11, he came home from camp saying, 'I'm done!  I want to infuse myself and I want my port out.'

So that summer we did some training and practice, and Dr. Mitchell gave us the go ahead to let him infuse independently at home and make plans to get his port out.  He thought Christmas time would be a good time to do it . . . you know, so it wouldn't disrupt soccer season.  It was an exciting time . . . we had become comfortable . . . comfortable and complacent and confident that everything was going just as planned.  Mac was going to gain that independence and that port was coming OUT.

But then you know  . . . life happened . . .

 . . . and the port stayed in . . .

we counted our blessings at the time that MacKale had the port.  It afforded us one less surgery . . . one less thing to slow down the start of his treatment . . . but who would have known that not all ports are the same.  When MacKale started chemo the oncology nurses would all get confused looks on their faces when they first accessed it. 

'This is a single lumen!' 

You see, most cancer patients get a double lumen which means you can literally have two IVs of meds going in at one time.  Double lumens are like the Cadillac of ports. But MacKale had the compact, fuel-efficient, 210,000 miles, 7 years-old-but-still-going-strong, never-had-an-infection-even-one-time, take-that, perfect-for-hemophilia patients, single port!  And we made it work . . .

well . . . it worked until about January when that poor little port that could . . . couldn't anymore and so out with the old and in with the new.  MacKale got himself and new 'double lumen' port of his own.  And remember how I cried and bawled with the thought of dealing with that old port the first time?  Well, I didn't worry about this new port at all .  .  . a ports a port right? When it came to ports, we were confident and comfortable.  We knew our way around.  Heck, we had been though hemophilia, chemo and limb salvage surgery . . . a port was NOTHING to give a second thought to . . .  but then it was!  Because these new ports weren't like his old one.  The one that I could have hit with my eyes closed from across the room during a black out was one thing.   I mean, literally, that old port I could have accessed with my eyes closed, but this new one . . . it was different.  The placement was funky, the shape of it was completely different, it was in much deeper than the last port and  . . . I'm not going to lie . . . I cried . . . and I bawled . .  . again!  Because suddenly . . . I wasn't confident or comfortables  Mike and I both had our share of 'misses' and when MacKale was in so much discomfort because of his leg and having chemo, causing him discomfort by infusing him poorly, by missing . . . that was a very difficult thing for either of us handle.   But we got better and we became less apprehensive . . . I still miss our old port, but I've made peace with the new one . . . just in time to bid it farewell.

Yep!  That's right!  After chemo ended in June, MacKale waited to head back to camp to try infusing again, but when he returned home, once again, he said, 'I'm self-infusing. I want my port out.'

He would have liked to have had it out sooner.  He knew there was a buck out their with his name on it and he couldn't rifle hunt until the port was out, but those nasty scans in October that showed suspicious spots on his lungs put a bit of a  delay in his plans.  So instead, here we are, almost exactly a year after the time he originally wanted to have his old port removed.  

This trip to DeVos has a very different feel to it for all of us.  It's a wonderful, jovial, almost celebratory feeling.  MacKale told me . . .'This is a celebration, mom.  I'm getting my port out.  I'm not coming down for chemo. And even though I'll be on the 9th floor for a couple of days . . . you can't make me walk the halls!'  (I never realized I was such a slave driver when it came to those laps!  But I guess I was!)  It didn't take much for him to convenience me that this celebration also needed gummy worms, Pringles and a box of little Debbie Brownies.

I love that he feels this way, because really, port removal for so many cancer patients is truly the mark of the end of treatment, but additionally, for a child with hemophilia, it's yet another mark . . . a mark of true independence . . . a coming of age . . . a graduation of sorts.  MacKale will get a double dose of 'ye-haw' and 'hallelujah' with it's removal and that is a reason to celebrate.

It will be good to get home and return to a boring, mundane, and blissfully simple routine once this milestone is behind us.  But as much as I want us to be normal and boring again, I pray that this new freedom does not, once again, make us too complacent and comfortable in our own lives.  Because you know, complacency has a tendency to be a dirty rotten jokester.   

It lulls you into believing that you can handle everything on your own.  That you alone are in control, that your life is traveling along as it should and according to your plan.  You forget the times you were paralyzed by fear and had only your faith to cling to . . .  And when you least expect it,  life will happen again and you'll scramble to find Him.  

Why is that . . . why do we so easily cling to our God in sorrow, when we are full of despair and fear but when we are joyous and when we celebrate and when we are comfortable, it is often so easy to forget to share these moments with Him as well?

I think about this a lot.  I pray over it.  I am trying to make a conscious effort to keep my God close to me, not just during my trials, but during our hours of quiet comfort too.  Not just to seek him in my days of paralyzing fear for MacKale and his future, but to look to Him when I am at peace, confident and comfortable so that I can find ways to be strong for others.  Because that's really what it's all about . . . it's about what we do from here.  What comes next . . .   But I'm not perfect.  And thankfully God understands that this family is a work in progress.

After weeks of peaceful, blissful normalcy, I pray that my complacency will not cause me to lose my urgency to fight childhood cancer,  to give aide and an ear to families struggling with a child or family member who is ill, it will not allow me to forget to love on all four of my boys every chance I get, to laugh, spend time with my family and friends or to find time for my faith.

So today, as we take this next step towards a comfortable, normal . . . (and by steps--I also mean--he literally walked into the hospital this morning on his own two legs -- can I get a hallelujah?)

I want to remember to give all the glory to Him for each and every day--good and bad.  Yes it has been a hard year.  But it has also been an amazing year as well.  God has placed us on this unbelievable journey as a family . . . and you have all travelled along with us.  What a gift.  And while I know there is a fine line between faith and complacency, I am not naive.  I know . . .  we all know . . . that those scans will come every three months.  There are no guarantees.  We know what can happen, but we choose to trust and have faith that He has us in his hands and will not take us down a road He will not travel with us.  That promise to carry us when we can not walk alone is what we hold on to.  So, whatever comes our way, we will continue to give Him praise, cling to His side and look for ways to show others His amazing love.

And with that . . . if you can spare a little holler up to the Big Guy, MacKale just got out of surgery, and we are parked back up on the 9th Floor of DeVos.

His hemophilia keeps us here until Saturday and then we'll travel home . . . during another predicted snow storm.  We would love to have prayers for an uneventful hospital stay and safe travels to and from DeVos.  And while you have His ear, give Him a big 'thanks a ton' for all of His answered prayers, for all of His blessings and for all of His abundant goodness.  God truly is SO good.

As always, you all continue to amaze us with your generosity of friendship and faith.  Thank you all.

Friday, October 7, 2016

In the dark . . .

 Scans are NOT for the faint of heart.  Scan day is long and arduous so when you get a chance to sneak down and visit friends in between appointments, you take that opportunity.

Sweet Mistha was more than happy to play peek-a-boo and try to touch MacKale and his hair through her window.  She's grown up so much and is such a big girl now.  We all pray each night for this little peanut.  She is a special friend from the 9th Floor.

It was bittersweet walking on the ninth floor after having left it June 3rd.  It feels comfortable and familiar.  We see so many of the faces that we hold so close to our heart--nurses, patients and staff.  They will always be so important and special to us. And yet . . . this is a place we never want to have to call home again.

So scans . . .
Echocradiogram . . . good.  His heart is functioning well despite all the poison that we pumped into him.  Audio test . . . mostly good.  He has lost some high pitch frequency hearing, but we'll take it.  I say it's an excuse to ignore me when I'm yakking at him.  X-ray . . . good.  Looks like the cadaver bone is starting to assimilate and mesh with his own bone.  CT scan . . . I hate CT scans.

It is a necessary evil. You see, osteosarcoma has this annoying tendency to show up and metastasize in the lungs.  This is why we do these scans every three months.  Even though MacKale had 99% necrosis, telling us that the chemo worked on his tumor, there are no guarantees that it won't come back!  It happens! 99% necrosis or not!  So we do CT scans.

Unfortunately and fortunately, CT scans are so good, they can pick up the smallest . . . itty bittiest of nodules, and yesterday that is what they did for MacKale.  Instead of the words, 'clear scans' we got 'several very small nodules.'  Now nodules can be a number of things . . . scar tissue . . . inflammation . . . infection . . . or metastasize osteosarcoma.  At this point, our doctor is hopeful that it is not mets (metastasized osteosarcoma), but we really don't know . . . we are literally in the dark.  And because of that, she isn't confident that we should remove MacKale's port just yet.

Of course, as a mom, my head goes immediately to fight mode. Doctor Mitchell knows this about me.  This is why I love her.  She literally has instructed Mike and I to worry about MacKale being able to drive in 4 years . . . not these nodules!  I'm worried about both!  

But really . . . I don't know what or if we are fighting anything.   These 2mm nodules are so small, seriously the size of a grain of sand, no surgeon is going to go in after them either way.  It's literally a wait and see game.  We are waiting four weeks and scanning again.  Hopefully, we will know something one way or another then.

MacKale is in good spirits.  His attitude is never wavering and every faithful.  "We don't know what it is, so I don't care about it."  He's right, of course.  We just need to keep moving forward, we need to remain faithful that 'God is sending the rain.'  We just need to prepare our fields to receive it.

So that's where we are.  We are in the dark, but holding onto our faith . . .ever thankful that God continues to bless us with your love and support.

Please please please . . . continue to pray for MacKale.  Pray that those nasty nodules disappear, that his body remains strong and that cancer has left his body forever.

Friday, September 30, 2016

Happy Cancerversary!

This entire month of Childhood Cancer Awareness, but especially this past week,  MacKale's cancer fight has weighed heavy on my heart . . . not necessarily in a bad way, but I have definitely been very reflective and reminiscent  about those last days before our own "lives turned upside down." Those blissfully, ignorant days before my faith was put to the test . . . shaken . . . and uprooted by cancer.

When I pulled up my iPhoto account yesterday to look for a picture of my class, I hit the "Pictures from the Last 12 Months" option.   Suddenly this was the picture that came up from October 1st, 2015.  This was MacKale at DeVos, the day of his biopsy.  This kid . . . so unaware of what he was suddenly going to have to face in matter of hours.  And Mike and I . . . so frightened . . . and still frightened.

On Saturday, October 1st, it will be exactly one year to the day that Dr. Joel Post walked into the parent surgery consult room and confirmed the fact that the tumor in MacKale's leg which he had just biopsied was, in fact, osteosarcoma.  One year!

I mentioned it to Mike the other day.  "October 1st is Mac's Cancerversary."
"His WHAT?"
"His Cancerversary!"
"Are we celebrating his cancer?  I don't get it?  What's a cancerversary!"

Quite honestly, I doubt that MacKale has thought twice about the day.   A year later, he is in the 7th grade, attending classes everyday, heading to PT three times a week and getting stronger.  While so much of what made him 'him' was taken away from him, he's still the same MacKale. His faith focuses him forward.  While I am reflective and often emotional as I look back over the year, MacKale, as any typical 12 year old boy would be, is looking ahead.  He's never been the kid to say 'why me' and, while it's been a challenge to find his new 'place,' he is rather more of a 'what's next' kind of kid.

I with I had more of the 12 year old boy in me. It's not that I feel the need to celebrate the day MacKale was diagnosed. I truly wish it was a memory I could erase forever.   However, the date is significant to me because it signifies the day that MacKale began this fight, the day all of you put us on your prayer lists, began supporting and fighting along with us and it signifies that a year later, he's still here . . . fighting, and while I am often stricken with doubt and fear for what comes next, he walked in faith and continues to walk forward in faith a year later.

A few weeks ago during mass, McCoy was serving and Father Joe had been speaking about faith and who in our life has taught us about faith.  He invited the parish to share with each other who it was that had taught them about faith and as we all started sharing with our neighbors, he turned to McCoy and said, 'Who has taught you about faith McCoy?'  And McCoy replied, 'MacKale!'

As parents we believe it is our job to raise our children in faith, we are to set the example and be a model of faith, but as I look over the last year . . . this, the most difficult year of my entire life, it is from my own children that  learned what faith really means.  MacKale's faith never waivered and his little brothers prayed and prayed, without fail, for him every night.  MacKale endured . . . well you know . . . he endured it all, but his brothers endured as well.  These brothers, all three, were separated from each other, their lives torn out from under them, everything they knew and understood about their life suddenly changed . . . and yet, they continued to pray.  When things wouldn't go their way, when unexpected hospital visits ruined plans we made . . . they rolled with it, they made do and they found a new normal.

As a year has passed, their faith remains and I am in awe of it.

So how will MacKale be celebrating this first 'cancerversary'?

Golfing in Phoenix, of course.  Last year, before his diagnosis, he was asked to attend a program called 'Getting In the Game' which brought two kids with bleeding disorders from each state to Arizona for golf, swimming or baseball clinics and play. He was diagnosed two weeks before he was to attend and never went.  It was devastating to him then, but the program told him, 'we'll hold your spot and see you next year.'  Well it's next year and MacKale is thumbing his nose at cancer and hitting the links.

I couldn't think of a better way for him to celebrate.

And quite honestly we have celebrated everyday since his last clear scan.  We've certainly had a blissful summer! Three months of no hospitals, no scans, no chemo, lots of fishing, and golf, and brothers, and loving each other (with some healthy brotherly fighting thrown in).

 MacKale is still hitting PT three times a week and, although he says he doesn't really like it, we all like the fact that he's getting stronger!   We have been blissful and basking in the delightful feeling of an almost normal routine.

But come next week, we are back to reality.  Next Thursday, we will head, once again, down to DeVos for MacKale's three month scans.  While I never really forget that they are looming, scans are easier to ignore when they are closer to being behind you than in front of you, when you can see three months of blissful ignorance ahead of you instead of the imminent pending and possible slap of reality ahead.

I am thankful that these days at the hospital for scans do not impede MacKale's good nature.   When I told him we would be headed down to DeVos soon after he returned from Phoenix, he only wanted to make sure that we would have time to be able to 'visit the 9th floor.' Somehow, despite all the unpleasant days and nights we spent there, that 'floor' and everyone on it will always be a part of him.  He and his brothers never miss the chance to include 'all our friends on the 9th floor' in their prayers each night.

So again, I am asking that you please keep MacKale and our family in your prayers over these next couple of weeks. I still have faith, although some days are easier than others, that now matter what God will bring about some good with all this.  When I see a Team MacKale shirt, when I look at MacKale walking without crutches, when I receive a note from a friend who is thinking of us . . . when I pray each night with my boys . . .  but it reminds me that He is still with us.  These moments come to me when I feel most vulnerable and afraid for our future . . . they are timely and perfect and they renew my faith.

Our specific prayer is always that the cancer has left his body and never will return.   Clear scans and NED (No Evidence Of Disease) would be a fabulous blessing!

You are all a blessing to us, and we are so thankful to you  for following MacKale this year and for  your prayers.  I hope I'm back every year for many years

Saturday, August 13, 2016

Walk In Faith

I realize it has been several weeks since I posted here, but really, not hearing from me IS generally a good thing.  Our family has been busy trying to find a new normal and packing as much fun and being together as we could possibly get during these last few weeks of the summer.  

MacKale has been golfing, camping, attended the Cadillac Viking basketball camp, playing with brothers, catching a Tigers game and has been, most importantly, working towards getting healthy and stronger at physical therapy--three times a week.  Oh and he's also infusing himself again.  Woohoo.  

The physical therapy part is a slow process.  It takes a ton of work.  This leg is not the leg he had and it will never be.  Besides having a 7 inch piece of his tibia replaced with a cadaver bone, he had a big hunk of muscle removed and other muscles moved and 5 inches of his fibula just taken out.  Supposedly that fibula is not 'necessary' and so they don't replace what they take of that.  The problem lies, however, in the the fact that all those parts and pieces that used to be attached to the fibula, now are attached to his new tibia. How will that work out? Well, we don't really know.  It means for now that there is a lot of 'give' in the side to side movement of that knee. It's not stable.  We won't know how much of that 'give' will go away until he builds up more muscle, but most likely, he will wear a knee brace of some kind indefinitely and his AFO for the unforeseeable future.  Has this discouraged him? Not yet!  Somehow, despite crutches and braces, he hasn't let it slow him down.  He assured me that this climbing wall was done 'one legged!' 

We know this is the work that needs to be done to get him mobile and moving.  He gets that, too.  He knows that nothing is going to come easy when it comes to mobility anymore.  But right before MacKale left for his second camp of the summer, Camp Catch A Rainbow, he crutched out of physical therapy and said, 'Mom, I have a goal!'

I was a little confused but anxious to hear what he had to say.  I mean, Teri, his physical therapist and all around miracle worker, generally works him pretty hard during his sessions and, while he doesn't complain about it, he generally isn't so enthusiastic afterward . . . I would say 'beat' is usually the state he is in.  But on this particular day, he said that he 'felt really good' about his therapy.

"My goal is that by August 12th I'm going to walk without my crutches. That's the day I'm suppose to golf with Matt, mom!"

"Ok, well . . . we have some work to do!"

Cadillac's MSU Alumni Association had planned an event for the 12th of August including golfing, dinner and a speaker, Mac's favorite Spartan, Matt Costello.  MacKale and Matt have continued to stay in touch, texting several times a week and had plans to golf together along with their dads.  

It was then that MacKale wanted to show Matt that he could walk . . . a big surprise for Matt!

Well that day was yesterday and here's how it went down . . 

He didn't set this goal for his mom --and he didn't do it for his dad--all that work he did to learn to walk without crutches he did to show Matt!  It's been almost a year since we've been able to see MacKale walk without crutches.  If you think my heart didn't nearly explode . . . well . . . I think it might have a little. 

I know that I've said it before, but I can't say it enough.  My heart had been breaking for MacKale since the day I heard the word 'cancer.'  I knew that his life would never be the same . . . I knew that the activities and things he loved to do the most, would be ripped away from this little boy and I didn't know how to fix it . . . I didn't know how to fill that gap that was tearing a hole in his spirit.  My goal was to keep him alive, but in the process, we needed to feed his spirit and keep that alive as well.   But God, in his infinite wisdom, knew what he was doing when Matt Costello's mom handed her phone to MacKale that night that the Viking Basketball team so graciously invited us to be their special guests.  I often wonder . . . if Coach B hadn't invited us to be there, if Matt's mom, Jennifer, hadn't decided to attend to watch her nephew Keegan play, if Jennifer hadn't had the initiative to connect these two  . . . how would MacKale have made it through all these trials? 

But all of those things did happen, and God gets all the glory for knowing that He needed to put these two in the right place at the right time.  I honestly don't know how we would have gotten through all this without Matt and the bonus of his new bride, Anna!  

There are no words that can adequately describe the gratitude that Mike and I have when it comes to Matt and his entire family.  When someone can give your child something that you can not give them . . . when they provide them with a vacation from the pain and the despair of fighting through cancer just by being a friend --you can not imagine what a gift that is.   And if Matt wasn't busy before, he certainly is even more so now with a new wife and working towards securing a NBA career.  Busy--and yet he found time to hang out and hit some balls with Mac! 

Our children often idolize and admire athletes for all the wrong reasons or despite their bad choices.  Lord knows, there are enough athletes out there that are gifted physically and yet, can't seem to stay out of trouble.  Matt offers MacKale the realization that athletes can be gifted and yet still struggle, they suffer disappointments, and have to work past those disappointments and work even harder to meet their goals, but, it's how they handle themselves in these moments, those moments when things aren't so 'easy'  that really matter.  It's having the ability to be gifted and blessed, and yet still having time to remember their faith, their family and their friends.

What a great role model for any child and what an amazing friend for MacKale.

These last 10 weeks have been such a blessing to our little family.  There are brief moments in the day, when I almost feel like we are back and our lives are normal.  

But the reality is, while we are so grateful for clear scans in July, we know that the fear of relapse is constantly 'there' in the back of our minds--trying to steal our joy.  It is a constant battle to fight those fears and doubts and we need your prayers to that end.  Pray for our ability to 'walk in faith' each day. MacKale will have many obstacles and challenges in the years to come . . . but with friends praying for him and our family, with people who love him in his corner, and by trusting that God will make something good of all this, I know that we will all get through this.

As always, thanks for being part of our journey and continuing to lift us up in prayer.  We pray that the cancer has left MacKale's body and it never returns, that he can continue to move forward in recovering strength and mobility and that we all will find a way pay forward all the kindness we have been so fortunate to receive in these past months.