Carpentry

 

We are so grateful so many of you care about Meghan, and our family. The love and support have absolutely held us up over the past weeks as we prepared to leave, and especially the last few days as we draw nearer to surgery. For those of you wondering exactly what is happening, I thought it would be helpful to explain in longer detail than what's easy to accomplish with a Facebook post. 

  When Meghan was born, she had surgery shortly after to place her shunt. Afterwards they took routine xrays to confirm the shunt settings and unexpectedly discovered that many of Meghan’s bones had not formed correctly. Many of her ribs are either widely spaced, or fused, and several of the bones of her spine either formed only on one side (hemivertebrae) or are fused together. 

We noticed that she kept her head tilted to the left, and the doctors commented that her face was slightly asymmetric. Chalking it up to torticollis, a common muscle condition in babies, they arranged for PT. When she was just a couple months old we started noticing that sometimes when Meg would move her neck, she would get this look on her face and begin to cry- we knew she was in pain. I asked for orthopedic team to re-look at the MRI she had of her brain when she was born and they were able to see that the bones in her neck did not form correctly either. 

This eventually led to the diagnosis of congenital scoliosis, Klippel-Feil Syndrome and hemifacial microsomia. Through our travel to Duke and meeting with the Undiagnosed Diseases Network, we learned that it is not likely genetic, but rather something happened very early during development that caused this constellation of abnormal bones, and organs.

Over the years we have seen many different doctors. Each of whom had shared that surgery on her spine was a matter of when, not if. She has had countless x rays, CT’s and MRI’s monitoring the growth and development of the bones. 

Her most significant abnormality is in the area of her neck. As she has grown, a curve in her mid back has developed which the surgeon thinks is her body compensating for the curve in her neck. On an x ray it looks like an “S” shape- two wrongs essentially making a right which is why she is able to stand mostly straight. Recently the curves in her neck and upper back have progressed and early this year we learned that the “when” of surgery is now. As she begins adolescence and the period of rapid bone growth the risk is that the curves will progress rapidly and cause pain and permanent disability. The curve in her neck was measured at 79 degrees. We count it a miracle that she has not been in significant pain. Our surgeon said he is amazed that she is able to stand as straight as she is. 

We have been told that Meghan’s case is particularly complicated as there are many levels of fusion (bones that are not separated) and several hemivertebrae. As surgical correction involves the cervical spine the surgery is highly specialized, requires very specific skill, and comes with significant risk. For this reason we have been referred to different doctors out of state. There are only a handful in the US that have the expertise needed to address her condition and do these types of surgeries regularly. 

Our neurosurgeon at Cleveland Clinic thankfully helped us navigate getting these opinions. She did warn us that because it is highly specialized, each surgeon would have a different approach and ultimately, it would be up to us to choose which approach we felt most comfortable with. An understandable statement, but imagine the pressure we feel as parents to “choose”! There is no step by step manual for this surgery- it is where the “art” of medicine enters in to meet the science. So we traveled. We listened. We prayed. That’s how we ended up in New York City, and in the skilled hands of Dr. Lawrence Lenke. 

We met with Dr. Lenke back in June. He said he was amazed that she hadn’t been operated on yet and he was grateful that he would be the one to develop the plan from the start instead of doing a corrective surgery (me too!). His extensive experience and thoughtful approach put Joe and I at ease and even though thinking through the plan with my medical hat on is enough to bring me to my knees, we feel confident that we are in the right place. 

Tomorrow Meghan will have a surgery to place a halo, which is a device that will be secured to her skull with pins. Saturday morning she will begin traction which involves adding 3 lbs a day to a weight system to help gently stretch the spine so that it doesn’t have to be “stretched” during surgery. She will be in traction for 23/24 hours for the next two weeks before the “big” surgery on the 22nd. 

The plan for the 22nd is still being developed and depends on her response to traction. We know it will involve the entire spine, but exactly what happens will be decided closer to the time of surgery. It could involve implants, rods, or other devices. Some of her spine will not be able to be stretched due to the fusions, so he explained that he will need to do some “carpentry”. This is a gentle way of saying he will be separating some of the fused bone. How much carpentry, he isn’t sure of yet. He said he has a 3D model of her spine that he will hold in his hands, study, and decide on the best approach as he sees how much of the curves are able to be corrected with traction. He will take that model with him into surgery, laying it on the table next to her to guide him. 

This is the part that I have to stop myself from thinking through or I can barely breathe. How I will be able to hand her over that day I am not sure. 

We were able to take a tour of the hospital with the Child Life specialist on Tuesday before we met with Dr.Lenke. At the end of the tour we sat down so she could explain the halo surgery to her (I didn’t want to prep her for this ahead of time on purpose. Sometimes I just want to be mom, and be support, not the bearer of scary news). Meghan took it all in stride, declaring herself “Brave enough to do that”. Maybe it was the gems they promised to decorate her halo with, or the fact that she will have her own Wii to play while she endures the traction. Either way- my heart. 

I lay awake the other night after that conversation with the surgeon, thinking through the plan, the surgeons words being tossed over and over in my mind like rocks in a washing machine, carpentry rattling the loudest. Medically speaking, carpentry is well, a little barbaric. But what was intended as a gentle explanation the Lord used to remind me that He is the master carpenter. She will be in His capable hands. He led us here and will be faithful to carry her through this. 

The day we found out Meghan would be born with hydrocephalus, Joe and I claimed Psalm 139 for her. As we read it, the words brought so much comfort knowing that she was created exactly as He intended. 

For you created my inmost being,  you knit me together in my mother’s womb. 

I praise you because I am fearfully and wonderfully made, your works are wonderful,  I know that full well…..

Little did we know how relevant that entire Psalm would become. The very next sentence of the Psalm:

My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. 

Her frame. 

He knows every bone, every surface, every curve. He holds them all together in His hands. None of this is a surprise to her creator, and He can use all of it for His glory. 

So it’s with that knowledge and peace that I washed and braided the hair that will have to be shaved tomorrow, and kissed the forehead that will have a few more scars on it when all is said and done. We will enter the hospital tomorrow for a marathon stay, declaring ourselves “brave enough to do this” and equally grateful that we are able to.

Love to you all,

Sarah

Chicken Soup

So it's been two months since all of this craziness has unfolded in our lives. It's been a whole thing. Turns out, being told you likely just have months to live is slightly traumatic, and I have spent a lot of time over the last few weeks reconciling the trauma, and finding answers to the question of where do I go from here?

So first, the medical update. On the PET scan, I had both a nodule and multiple lymph nodes in my chest that "lit up". Two oncologists, and a radiologist looked at the scans, and believed there was no chance it could be anything but cancer. As they were scheduling the biopsy, a second radiologist looked at the scans because the nodule is in a difficult place to biopsy. He enlisted the help of a pulmonologist to look at everything. The pulmonologist was the one who first brought up that he thought there was a chance that it could be histoplasmosis. Thankfully from there, I got put on a fast track to see both infectious disease, and the pulmonologist. A biopsy of three of the lymph nodes that were adjacent to my airways revealed one that was positive for histoplasmosis, and the rest for inflammation. The pulmonologist assured me that all should be well- but I still needed to follow up in two months for another scan, because of the nodule that is present which we were unable to biopsy. This is the waiting, and where I've been living for the past couple months. It has been a very strange place to be.

I was relieved, but there is still "cautious optimism". I have lived for four years now in the wake of cancer. I have had trouble looking at pictures from "before cancer". I look at the smiling person I was, and there is such a deep ache in my chest over what "she" didn't know. There is grief over the way it was "supposed" to be. Though my hair has grown back, and the miracles of modern prosthetics preserve my silhouette, and by all "appearances" I am well.....It hasn't ever been "over", and it never will be.  It happened. I will always have scars, follow ups, and symptoms that make me second guess whether or not it's "just" an ache. Beyond the physical reality, is what I consider to be the most difficult part of cancer- the emotional wounds. What this experience revealed to me is how much I have spent of the last four years trying to move "past" cancer. Trying to get back to what I was before. Stuck, emotionally in the mode of survival. I ran full steam ahead during treatment, and continued to do so once treatment ended, because let's face it- this is hard. It is much easier for me to remain strong when I dive into work, my kids, my hobbies- anything to keep from having to feel. I can't cry- I "have to be strong", and I don't have time to fall apart. There is probably something prideful about being able to embrace the hardship, and deal. It's part of what has served me so well in Emergency Medicine. But the pain, and the grief of the experience leave such deep wounds. Wounds that have made me a little broken inside, and I haven't allowed them to heal. I just look at my blog (and by that, I mean the lack of blogging) to see the evidence. When I write, I process. I allow myself to feel, and invite others into the process. I get to shine light on the truth of what's inside me, and let the Lord speak His truth over it. I have been running from these wounds for a long time. This whole experience has ripped the band-aids placed so carefully over them completely off. It's time to let them breathe. This involves admitting that I am a little broken- ok, a lot broken, and I am ok with that.

  It takes a lot of effort to continue running when you are injured. It's exhausting. I have lived too long in the striking the pavement of the valley of the shadow of death....and although the truth is we all journey in this same valley, the difference is where your eyes are focused. On the shadow cast by the mountain, or the One who holds our life in His hands, covered by the shadow of His wings.

This past week was my two month follow up. I had another scan of my lungs, and met with the pulmonologist again. I had hoped that the nodule, and lymph nodes would just be healed and gone, but unfortunately they look the same, to mildly larger. Could it be cancer and histoplasmosis? Maybe....but my symptoms are better, and looking at the whole picture he assured me that there is most likely nothing to worry about. While the lymph nodes should eventually heal, in some cases the nodule will never go away almost like a "scar" from the infection. In 9 months we will re-scan again to see if things have changed. This is of course, is good news..... The difficult part is when the next day, I read the radiology report which says "increase in size of adenopathy, likely metastatic". The words leave a sour, awful pit in my stomach. They carry an all too familiar weight. There is some temptation to give in to the fear, and jump back on the roller coaster.

So then, what's a girl to do? The only answer I have, is to pray. To continue to pray. Because remember a few weeks ago? I had "just a few months". We PRAYED. YOU prayed. And then- prayers were answered. Some may call it a coincidence. That it was fungus all along. But then we miss the opportunity to give credit to a completely amazing God. One who is capable of miracles. One who longs to give us good things. If Jesus can turn water into wine...He can turn cancer into fungus. Amen?

Using my medical training and perspective, I know that we have to look at the whole picture. We have a biopsy of one of the nodes that did show histoplasmosis. I have an expert that is telling me there is nothing to worry about. I'm not going to lie- I can't help but have flashbacks from my original diagnosis...I was told for a while that we would "watch" the lump. For 9 months actually.
I could let this make me scramble, push, fret, and be anxious all in the name of advocating for my health. But, I have a peace about where I am, and I trust that for now, the right thing to do is wait. No matter what the outcome is, the truth is that we are all on a path toward our eventual physical death. Cancer or not, tomorrow is not guaranteed for any of us. I could let fear motivate me, fuel my anxiety over what may or may not be happening in my body. But Jesus asks us to trust Him completely. He is sovereign, He is good, He has been faithful, and He holds all things together. My life is no less in His hands yesterday, today, or tomorrow, no matter what choice I make, or how many months I have to wait for more answers. I don't have to ride the roller coaster. I can can keep my feet firmly planted on the solid ground of His word, watching the cars plummet down, and soar back up again, all the while knowing I am secure because I have a hope, that is an anchor for my soul. 

So I am taking steps to support my continued healing both physically and emotionally. I am in a place where I can be thankful for this experience because I believe it has helped me to understand how deep the wounds were, and how desperately I needed to tend to them. Jesus loves us too much to leave us broken. His desire is always for restoration, and healing, but it is a two way street, and first we have to trust Him enough with our pain to let Him into it. So, in obedience, I will slow down, sip the tea, soak in the Word, allow the tears to fall, and my eyes to lift upwards. So thankful that we serve a God of miracles, and tender mercies.

It's time to heal. Chicken soup, anyone?


XO,

Sarah

For You have been my help, And in the shadow of Your wings I sing for joy.

Psalm 63:7

Chase

I never expected the loss to feel like this. To be actual physical pain. The kind that squares itself in the center of your chest, presses down hard and causes waves of grief to come rolling out of your eyes and spilling their salty oceans on your cheeks. Grief is kind of like a puppy.... It doesn't understand rules, and rarely behaves. It has a way of pulling at the corners of blankets you’ve thrown over previous spaces of grief, shaking it back and forth until there’s just enough uncovered to make you feel again. Oh that four legs, a wagging tail, and the softest ears could undo me like this. He always there, quietly waiting for my hand to reach over and absently twirl the finest silk he had to offer. The greatest ache is in the new quiet...the absence of his nails clicking on the floor, the thunder of his paws as he raced after me down the stairs. The thud of his body as he curled up next to my bed, and the deep sigh as he settled into “his spot”. The throaty low moan-growl and squinty eyes when you dared to finally end an all out massage session, or when the kids were tucked into bed and he would let you know it was “his turn”. He was never a loud dog- he only howled when there was a stranger coming down the driveway, because that was his job. Other than that he was quiet companionship. Warmth. Unconditional love. 

When we lost Duke, we were in the middle of cancer. Of a summer of tragedy and trauma. It was so sad...but it feels different now. Looking back, I don’t think I had time to fully grieve him. I couldn’t. We were already barely hanging on. But Chase...he lived forever in golden years. He was there through so much. Through all of my "growing up". We got him just a few months after Duke. Knowing that Duke needed a buddy, and with the endless time and energy of newlywed kids we signed up to be fosters for a rescue organization, Golden Retrievers In Need (GRIN). Our first foster came quickly- they needed a family with medical experience to care for a sweet girl who had been hit by a car. Abby came to us unable to walk- some toes amputated, a deep infection in her leg, and an external fixator device holding her other leg together. She healed, and was eventually adopted by the perfect family for her. Before she left us though, I got another phone call from GRIN….they had two dogs that needed placement. One of them was a “wild dog” who they had named “Billy”....wild Bill. He had been picked up on the run. He was found wandering on the side of the road, and after a while at the shelter, no one had claimed him. I remember saying “I’ll take the wild one”. I met one of the volunteers, and loaded him up in the car. When we got home, he was so crazy he could barely hang on the end of a leash in the driveway. I remembered thinking what have I gotten myself into! But we brought him into the backyard, and he met Duke...the two of them were instant buddies. Later that evening I was lying on the couch. “Billy” hopped up onto the couch with me, stretched out his gangly adolescent dog body along my side, and stuffed his nose into my neck. He chose me. I remember looking over at Joe…”This one is staying with me…” I said… He laughed. I think he already knew that. Billy, of course, was Chase. We named him that because from that day on, he was never far behind me. He is the first and only dog that’s ever been “mine”. Oh how lucky I was to have picked the wild one, and in return, he picked me back.

Losing him...just makes me reflect on everything he saw me through. The normal stuff of life- every morning cup of coffee. Every time I loaded the dishwasher. Watching and waiting. Every time I walked in the door from a long shift in the ER. Every load of laundry carried with him at my heels. His eyes gazing over the edge of the counter as he quietly waited for me to fill up the water dish. Bursting underneath the garage door to run to greet me at the car. The long runs he would accompany me on. For a while he would go 7 or 8 miles...eventually he slowed down and told me he was done running with me, but it didn’t stop him from getting excited every time I pulled out his collar. He would come running if he heard his dog tags clinking together. He was there for the big stuff too...he was here when I lost our first baby to miscarriage and sobbed myself to sleep in his fur. He was there when we eventually brought home our Addie, and I cried because I couldn’t imagine how I was going to feed a kid AND the dogs (insert laughing face here!!!!). Through these 9 years of becoming and being a mother. He was there the day we found out Meg would be born with complications...and the day we brought her home too. For first steps, and first days of school. He was there when I got diagnosed with cancer, and the day we lost our Duke. He was on snuggle detail, lying quietly with me during the chemo days when I couldn't get out of bed. His faithful, unconditional love saw us through. 

There is something about losing a creature who has lovingly existed to bear witness to the stuff of life, was there for every moment, even and especially, the quiet ones. The moments he laid at my feet while I rocked a baby in the middle of the night. Watching, and waiting his turn. The moment I unwrapped the bandages on my chest for the first time and quietly sobbed in front of the bathroom mirror, standing guard by the door, ready and waiting for me to need him. Or the loud ones, where we sang happy birthdays- all our attention focused on the birthday girl, while he sang with his eyes, and quietly melted into the happy landscape….but his eyes were on me. Watching, and waiting his turn. Unconditionally loving just being with me. What a gift.

Don’t get me wrong...he was still a dog. He once ate two dozen cookies after I dared to turn my back for a second. I left the door to the garbage can open too many times to count...and too many times I cleaned up dissected bits of garbage covered in dog slobber. He adventured to the pond to swim in the summer, and returned afterwards too many times covered in something dead. He stole socks, ate crumbs, and could clear a room with a special kind of dog fart. "UGH Chase!!!!" was an expression heard frequently in our house. 

He began to decline a couple of months ago. We brought Strax home in November. I think he waited until he was solidly bonded with our family before he began to let go. A changing of the guard. I knew his time was getting close. He was losing weight. I was away a couple of weeks ago and Joe called to say he thought Chase might be dying, but He hung on until I got home...and rallied to spend the last couple of weeks with me. But the last two days he sat at the bottom of the steps when I went to bed, unable to climb them. We knew it was time yesterday after he couldn’t eat, was getting weaker, and couldn’t even hold any water down. Medication wasn’t working, and he was suffering. The vet found a large tumor in his abdomen. Yesterday morning, I knew it was time. Yesterday, was April 7th. The 4th anniversary of my cancer diagnosis. Maybe God knew I already had enough “sad days” penciled in on the calendar of my heart.

I can’t help but look to Jesus as I grieve this incredible loss. He created these amazing creatures. I believe he created dogs with the amazing capacity to reflect some of His nature. The part that is with you, watching and rejoicing just because you are you. Unconditionally loving us- in spite of every imperfection, and even if we aren’t paying attention to Him. Longing for our affection in return. Companionship- constant, and devoted. 

The Bible isn’t very specific on what happens to animals when they die, but it does tell us that He cares for every creature. That there will be animals in heaven. I can’t presume to know the design He had for animals, but I know how much He loves us, and we are told that in Heaven, there is no more mourning. No sadness or sorrow. Only joy. I know He is a God of restoration, reconciliation, relationship and reunion. I can only imagine that part of our joy and hope we have in Heaven, is to be restored to completeness, to be reconciled to him, and to be reunited with the relationships that have brought us so much love and joy on earth. On earth, as it is in Heaven. When I finally get to enter heaven, my greatest joy will be finally seeing the face of my savior. Of getting to embrace my Heavenly Father. But maybe, just maybe, there will be someone else watching, wagging, and waiting his turn. 

Rest in Peace Chase

Adopted October 2006, and faithfully loved until April 7th, 2018

“Are not five sparrows sold for two pennies? Yet not one of them is forgotten by God”

Luke 12:6

Snuggling together in heaven now.

Patients in the Middle

There's hope.


Remember how I said we are praying for big things? That there's at least a chance that they are wrong? I have had some people storming the heavens on my behalf. Tuesday, and Wednesday, two different doctors looked at my scans, convinced the cancer has returned. They read my scan as "concerning for neoplasm, possibly metastatic" with multiple lymph nodes lighting up as well. In a young person, who is otherwise healthy, with a history of cancer, there aren't too many other things they think it can be. Wednesday morning I spoke with my oncologist, and it was a very somber conversation. He had spoke to the radiologist, who was pretty sure it is cancer.

Three hours later, he called me back. A testament to his incredibly persistent and caring nature, he had reviewed it with another radiologist. This time, he told me there is at least a chance that it could be a "metabolically active" fungal lung infection. It is possible for me to have been infected without significant symptoms, and what we are seeing on the PET scan could in fact be my body clearing the infection. At this point, I feel like I am on a crazy roller coaster.

Yesterday I saw an infectious disease doctor who agreed that it could be a possibility. In Ohio we live in an endemic (widespread) histoplasmosis area, and I have traveled to other states where there are other types of fungal infections that are prevalent. They are testing me for all of them. She said I will still need a biopsy to be sure it isn't cancer- some of the labs can remain elevated for months to years after an infection, and sometimes they can come back totally negative (meaning normal) even if you still have an active infection. So given my history it's the logical choice to be sure. That's scheduled for next week. We also have backyard chickens, which are known to carry histoplasmosis. Since the coop floor isn't dirt she said it's less likely for the fungus to grow there, but it's possible. Possible, is my new favorite word.

These last few days have been incredibly trying on our family, but it has made me more certain than ever that I am surrounded by so very many incredible people. People that have been willing to ride this roller coaster right along with us, and let me tell you, that makes it so much easier to bear. I'm not worried about me, strangely, I mostly hate this for my kids, and my sweet husband, and my dearest friends who feel the same sadness and fear that this has allowed into our lives. I hate that cancer has even entered our lives and causes this kind of turmoil. It's our reality, and I feel so terrible that anyone has to experience this other than me.

But, if I didn't let people into this, if I didn't have people journeying along with me, then they too would miss out on seeing what God can do. They too would miss out on witnessing either the miracle we are praying for, or the joy and hope we get to have in the middle of the sorrow because of our faith in Christ. And I wouldn't have people bearing witness to the power of prayer because I have asked them to pray, and I promise you, people are praying.

So we will wait until next week to know for sure. In the meantime, we will celebrate each day with renewed perspective. It is hard to be a patient in the middle, having patience in the middle of the waiting. Thanks for being willing to bear this burden with me.

And if you have any good recipes for Chicken, start sending them my way. Eggs are cheap, and life is precious.

Sarah

But as for me, I will hope continually, And will praise You yet more and more. 

Psalm 71:14

So you heard it from me, again.

Oh how I wish I wasn't writing this one. I have avoided writing for some time. I mentioned in my previous post that writing forces me to process. Sometimes life hands you more than you want to process.

I got a call today from my oncologist's nurse, telling me that I likely have a recurrence of breast cancer. I have been dealing with back issues for a few months, and have gone through PT/resting/walking (which for those of you who know me, is pretty tough). I am used to being super active. Around Thanksgiving, I got what I thought was a cold, and the cough just never really went away- I just chalked it up to a bad viral season. A couple weeks ago I started with a little sense that I should at least speak up about my symptoms. For those of us in the medical field, it is really hard to be your own advocate- we are often afraid of seeming crazy, and I didn't want to be the crazy former cancer patient with "symptoms". At any rate, I had an MRI of my back which was all clear, but when I developed the cough, and my back pain had not improved, my oncologist decided to order a PET scan. I never dreamed they would find something in my lung.

As of right now, the plan is to figure out if we can biopsy the lung or one of the lymph nodes that are showing up on the PET scan. That way we can tell if it's a new cancer, or a recurrence of the breast cancer. The information I got today from the on call oncologist was that they think it is likely a recurrence of my primary cancer, and that treatment will be focused on prolonging my life. Not kidding. I pray that somewhere in there, someone is wrong.

BUT if they aren't, that's where we are. And I wanted you to hear it from me, just like the first time.
I will do my best to keep everyone up to date on the plan. For now, just know that I am so grateful for everyone's prayers, and we are trusting God for big things. We have seen Him work in Meghan's life- healing her in ways that I may never understand. We trust He is sovereign, but know He is weeping right along with us today.

Right now, all I can do is be still, and Know. And I'll dust off the blog in the process.

Love to you all,

Sarah

The Long Overdue Post

Hello blogosphere....I've been avoiding you, but I swear it's not you, it's me.


Where do I start? The whole of 2016 was spent catching up. Catching up on life, living, working, finances....we had a lot to play catch up with. It's was a crazy busy year. Some amazing new opportunities arose for me- I have been able to speak to several groups now across the country about our experiences as a family, as a mom to a special needs child, and as a cancer survivor. It's part of an amazing bigger picture that I had no idea was coming. I never thought I could get up in front of a crowd of more than two thousand people...but I was given some supernatural courage that day, and I think once you've shaved your head, you can do just about anything:) We had some wonderful holidays where no one was in the hospital (finally!), and made some amazing family memories.

Addie spent the last year growing, and finding out that she has a passion for swimming, horses, and all things chicken. It's so amazing to have children, and watch them discover what they love. More importantly, we as parents discover that they are these entirely separate people. uniquely created, with shades of us as parents, but wholly their own individual selves. What a gift to be able to watch them grow. She had a wonderful second grade year, despite a little run in with a fructose allergy (who knew you could be allergic to fruit??). Anyway, all is well now that we figured that out!

In a similar fashion, Meghan has spent the last year catching up as well. She finished her last year of preschool, and graduated last week. She walked across that stage with her diploma like she had won the lottery. She is becoming more and more articulate, and revealing her gifts one by one. She wants to be a ballerina when she grows up, so this mom found an adapted dance class and let her loose. My little girl, the one we had no idea if she would walk, is going to be in a dance recital next weekend. Pink tutu and all. My heart just cannot stand it. She is also learning to play the piano. As much as I love to watch her dance, I am in AWE when I listen to her play the piano. She will sit there for 20-30 minutes, several times a day, and play. It is obvious that the music is just inside her. It is a gift.

And, because so many people are asking, drumroll please.....WE HAVE OUR SERVICE DOG CLASS DATES!!! October 2nd, Meghan will get to meet her dog. We have to travel to the training facility for two weeks to be trained as handlers, and so the dog can get used to Meg and how he/she can help her, and so that Meg can learn how to give commands, and use the dog for support. We are beyond excited! I am so grateful that she will have this incredible opportunity.

As for me, well, remember when I said I've been avoiding the writing? Well I'm sure I've said this before, but when I avoid the writing, I can avoid the processing that comes with it, and when I avoid the processing, I avoid the pain. And besides, who wants to read about all the feelings....or at least that's what I let myself believe. Because honestly, the survivorship issues are hard. Everything is different, even if it doesn't look like it is, and most people are so glad you are "back to normal" they don't really want to hear about all the ugly. But it's there. It's difficult not to lament over how things might have been different if I hadn't gotten sick. It's difficult not to think about how different our life would be if Meghan had been born without so many challenges. And the absolute last thing I would ever want anyone to think is that I'm not grateful to be alive (because I am) or that I resent my daughter (because nothing is further from the truth), but yes, this life is difficult at times.

I spent a good portion of the last year wrestling with cancer treatment. Off and on medications that are supposed to block the growth of any remaining cancer cells, and prevent a recurrence. Wrestling with the decision not to have reconstruction. Wrestling with body image issues, and hiding my pain with busyness, because when I'm busy I just don't have time to feel. Each oncology follow up appointment is like ripping off a band aid. Living with the constant shadow that cancer casts over your life is at times, unbearable.

But, I made the choice to fight. Sometimes, that means allowing yourself to actually feel the pain, get it out in the open, and shine some light on it. To expose the scars, and the places that are still deep wounds. Healing cannot come if I refuse to let the light of the Truth, the breath of the Spirit, and a flood of Living Water wash over all of them. Sometimes fighting means lifting heavy things with friends (thanks to cancer, I can now squat more than I weigh- Crossfit has been better than any PT program for my range of motion issues after all that surgery, and it comes with an amazing community of supportive people). I am grateful for all of the people in my life who continue to extend friendship, and grace as I figure out this next phase of life. Most especially for my husband, who's unconditional love is truly a gift.

You can't appreciate the joy without walking through the trials...I wonder if I would have missed how incredible it is when I hear music notes flying through the air as I do the dishes, how incredible it is to see an almost 8 year old fight with her sister because now, she has an opinion. Or how sweet the time is, just after dawn, when the air is ripe with His new mercies in the morning.

"Weeping may stay for the night,

but joy comes in the morning.....

I will never be shaken.....

You turned my wailing into dancing;

you removed my sackcloth and clothed me with joy,

that my heart may sing your praises and not be silent.

Lord my God, I will praise you forever."

Psalm 30:5-12, abbreviated.

Happy 2016!

It's been a while...

I realized I haven't updated the blog in over 6 months! In those 6 months, we have met so many new people, and have begun moving toward the next phase of our lives. Meghan was recently approved to receive a service dog and as she has received such incredible support from the community- and from so many people that have never even met her- that we would like to give everyone an update on how she is doing!

In one word? Awesome. This kid...she continues to defy the odds. She is determined, persistent, and tenacious. She can light up the room with her smile, and her sweet little voice is almost too much to handle. Currently, she is really into books by Bill Martin Jr, and Mo Willems (have you read the Elephant and Piggie books? If you haven't you're missing out!). She is reading at a first grade level. Her neurologist is "puzzled".... He says he cannot explain her brain. If you read her MRI report, it's paragraphs long describing all the things that are abnormal. My sweet little poor prognosis cannot be explained. It makes me smile:)

We seem to have figured out a way to manage her blood sugar issues when she is sick, and her high protein supplements have helped restore some balance to her chemistry. She has had some issues with intermittent vomiting, and we don't have great answers. She has had several episodes over the last year, and after a couple of hospitalizations there is a possibility that it is her shunt causing the symptoms. The plan is for her neurosurgeon to explore that possibility the next time she has an episode (we are praying that she decides not to have any more episodes- exploring means invasive testing and possible surgery).

She is doing well in school, and we can see how it's really helping her social skills. Her primary "social therapist" however, is her big sister, who spends countless hours playing with and helping her develop her imagination. Meghan absolutely adores Addie, and there have been many moments that I would like to bottle up for eternity- God's perfect plan included this special relationship, and it is a blessing to watch.

Meg is also in the market for new wheels, and we are getting pretty close! Hopefully in the next month or so she'll have a flashy hot pink ride to show off. She's been walking for almost a year now, but her balance continues to be an issue, and she isn't yet able to navigate long distances or busy public environments without the assistance of a wheelchair. According to her Physical Medicine and Rehab physician, this will likely be the case for several years. Which, makes us REALLY excited about the decision to partner Meghan with a service dog. Our mission as her parents is to help her be the best Meghan she can be- to give her every opportunity to be independent, and have every resource to increase her quality of life. A service dog will drastically change what she is able to do without the help of an adult. We also know that it will help increase her options for education, as the dog can help her navigate a school environment that has it's own unique challenges. There are some decisions that are difficult to make, but this was not one of them. It will take around 18 months for Meghan to receive her service dog once we finish our fundraising commitment. We have once again been blessed by so many family, friends, and anonymous donors willing to be a part of Meghan's story. It is humbling, and brings me to my knees with gratitude. Know that we sincerely appreciate your kindness and generosity.

And did I mention that she is about to turn 4? I can hardly believe it. And there you have it:)

Thankfully things have slowed down for me a little bit. My last big hurdle was a surgery in October to remove my ovaries, putting me in early menopause (groan) but allowing me to take a better medication to prevent a recurrence of cancer. I also had my first infusion of a medication that works to prevent bone loss, and also has been shown to reduce cancer recurrence. My oncologist calls it "optimizing my treatment"...I called it a-little-too-close-to-chemo, but knowing what it's doing helps to provide the mental fortitude to endure the side effects. I'll have these infusions for three more years. Can I just be honest for a minute? Part of the reason I haven't posted is because it has been difficult to write. Writing forces me to process, and I am weary of having to process. This part- the after- when everyone but you has moved on is the hardest part.
Many people assume that once the active part of cancer treatment is over, you are "done". Anyone who's gone through cancer treatment will probably tell you that the reality is that you are never done. Cancer leaves an invisible, but indelible mark on your life. Every oncology appointment, every lingering and permanent side effect from treatment, every time I look in the mirror- it's a constant reminder of the trauma. I am SO ready to move on, and in so many ways I have, but in many more I am forced to re-define normal. To fight the urge to give in to the enemy's whispers. Sometimes I fight using the right weapons-prayer, writing, and physical training..... and sometimes it's easier to shove it aside.

I've done a lot of shoving.

Slowly but surely, I'm learning how to give myself grace. I know I have so so much to be thankful for, and it is the thankfulness that I choose to focus on. I know beyond a shadow of a doubt that God can use anything for good if you let Him. I don't yet know the full spectrum of how He will use this in my life, but for now, I'm still here. I'm willing to share the story that He's writing. He gets ALL the glory.


And that's enough for me.

"You intended to harm me, but God intended it for good" 

Genesis 50:20