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.