"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.

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. Your eyes saw my

unformed body; all the days ordained for me

were written in your book

before one of them came to be."

Psalm 139: 13-16









Monday, January 18, 2016

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




Broken Vessels

I had a wait a while to write this one. In fact...I waited until September 2015. I couldn't post it then. Sometimes being vulnerable, means, well, being vulnerable. Going back to re-read it now, I feel it's just as honest as it was in September, so here goes:


Sweet, spunky, loving and full of life Laura Strong lost her fight against cancer just a few weeks ago. I was only privileged enough to cross her path for a short time, but that chance meeting left an indelible mark on my life experience, as was her way with everyone she met. Her death is a bittersweet mix of rejoicing that she is in heaven, and the searingly painful reality for her husband, three children, and everyone who loves her. This is where the shadow creeps in.

It's easy to process your diagnosis, arrive at a place where you feel "comfortable" with the shadow. Walking alongside it for more than a year now, that shadow and I are well-acquainted. Most of the time it only requires a quick glance- the times when people compliment your "haircut", or you realize you can't wear that strapless dress you've been hanging onto for a few summers. Sometimes, it's easy to shrug it off, turn on the light of the truth, and forget that the shadow is there. Then there are times when the shadow slips it's arms around your spirit and squeezes. Losing Laura was one of those times. It's a reminder that the shadow is real- very real- and a reminder of how much I need to continually seek the light of the Truth, lest I be convinced of the lie of the shadow. Because that's just it...although it is very real, it will never win. It's a lie I can't afford to believe.

Laura's gift to me on earth was a quilt. Her gift to me in heaven is the reminder that my life here on earth matters, and is precious to the one who has every one of my days written in His book. Her gift to you, what she would want you to know, is that you are precious, you are loved by your creator, and your life matters. And she would give you permission to give the finger to anyone who tells you otherwise. We are all broken- whether it's cancer, a disability, or a slight tendency toward anger and a penchant for pride. The difference is what you allow God to do with your brokenness.

Like Laura, I want to be a vessel. A broken vessel, able and willing to be filled up with grace. Jesus uses our brokenness to share His truth- the truth that He was the ultimate broken vessel- perfectly broken for our benefit. And in that truth, we find rest.


Friday, June 12, 2015

Tapestry

Warm weather, sunshine, and relaxing into our summer routine have brought some much needed peace into our house. The morning rush gives way to breakfast in our jammies, watering flowers and enjoying each others company. I took a new job, and that has changed things a bit for us too.  This is a season of first anniversary's for me- diagnosis, surgery, chemo, losing my hair...the firsts were all one year ago and it's been so comforting to relive those anniversary dates and celebrate where I am right now. The future isn't guaranteed, and I have a fresh appreciation for the mundane- washing the windows, tending the garden...all things I didn't have the strength or energy for last year and I so appreciate being able to do these things this year.

The girls have been doing well, and we have enjoyed some new additions to the family- chickens! It's been a lot of fun to have this little project to work on as a family, and they have enjoyed watching them grow. Speaking of growth, Meghan had her growth hormone stimulation test- a most unpleasant experience for her unfortuantely, but we did discover that her body was able to respond appropriately. This is good news, except that it means we are still looking for a diagnosis. We were referred to a different endocrinologist, one that specializes in hypoglycemia. After reviewing some additional labs with her, we were sent home with a ketone meter. We measured her glucose and ketones before meals, and we discovered that she is in a constant state of ketosis! Ketones are the byproduct of protein and fat metabolism, and that basically means that she is relying on her fats and proteins for energy, instead of glucose. The endocrinologist thinks it is a form of glycogen storage disease, and so we will likely re-visit the geneticist to discuss further testing. The good news is that we can treat this by changing her diet, and we now have a better plan for how to treat her when she is sick- with a different formula, and an "emergency plan" on file for the ER to refer to. I am a big fan of having a good plan! Other than that, she has just been working hard at her therapies, and is getting stronger every day.

 Addison just graduated kindergarten and we celebrated her 6th birthday. She is growing up, the littleness is slipping away and we are solidly in that phase of parenting that is equal parts challenging (she is strong-willed and energetic- our parenting style is to do the best we can to give direction to that energy and will, without breaking her spirit), and pure joy (she is silly and loves to laugh!). We have watched her personality develop, and she is growing into a joyful, imaginative, strong little force to be reckoned with!

  One of her kindergarten classmates has recently become ill with a difficult diagnosis. Since she missed her graduation ceremony, Addie and I headed up to visit her in the hospital. When we got there, Addison didn't hesitate- she kicked off her shoes, and climbed into bed with her girlfriend. The two of them giggled, drew pictures, and played with their graduation caps. Sweet little Ava is battling a disease that affects her kidneys, and the fluids and medications have changed the way she looks, (although she's just as pretty as ever), and she has an IV, which can be intimidating for many people, especially children. Her mom and I looked on, and in that moment I realized how all of the difficult things our family has been through has allowed Addison the freedom from fear- and that freedom in turn allowed her to tenderly minister to her sweet friend, in the only way a 6 year old can- by bringing normal to the abnormal, and light into darkness. In that moment there was clarity- there is purpose in the pain. Jesus has woven the things that were meant to harm, into refining threads of character to be used for His purpose. We may not get to see the entire masterpiece, but even a small glimpse at it's beauty blesses me beyond reason, and gives me strength to continue on, in confidence and peace.

 I want you woven into a tapestry of love, in touch with everything there is to know of God. Then you will have minds confident and at rest, focused on Christ, God’s great mystery. All the richest treasures of wisdom and knowledge are embedded in that mystery and nowhere else. 

Colossians 2:2-4

Snuggling with her friend!

We are raising a country girl:)
Summer fun!





Friday, May 8, 2015

Living Proof

I've run in to so many people lately asking for an update, so here it is!

Many of you know we were just in the hospital again. Meghan turned 3 at the beginning of March. We have long been told that she is high risk for hormone deficiencies due to the damage caused from her hydrocephalus, and that they would usually present around age 3. When she was still an infant her growth hormone levels were very low, but came up again after she got her feeding tube and began getting the calories she needed. She's a petite little girl, but has thus far followed her own growth curve, and her other hormone levels have been fine. The last three illnesses she has had have landed her in the hospital with hypoglycemia (low blood sugar). At first they thought it may just be due to her small size, but this admission revealed that a growth hormone deficiency is probably the cause for her low blood sugars during times of stress on her system, such as illness. She just can't make enough growth hormone to keep her blood sugar up when she is sick. We are now scheduled for a lengthy stimulation test next week to confirm the diagnosis. They will start an IV, and give her medication and timed blood draws. The good thing about all this is that if we are able to confirm the diagnosis, then we will be able to easily treat it with daily injections, and hopefully avoid hospital stays every time she is sick! Other than that she has been doing really well.

In other news, we are wrapping up Addie's kindergarten year. It's so hard to believe this kiddo is about to turn 6. She recently lost both her front teeth, and has the classic 6 year old smile:) 





Next week happens to be a big week for me too. It's my final Herceptin infusion, and we plan on celebrating! The year of cancer is finally coming to an end. I get to celebrate turning 34 by running a half marathon, with significantly more hair than I had last time, and no radiation burns to slow me down. A few days later, I get to have my medi port removed, and will finally be able to break free of the active treatment phase. 

This year I will be running to celebrate life, but also in honor of my cousin Nick Nicholson. Nick lost his battle with the demons of depression on April 24th, and our family is forever changed. There are not adequate words to describe the influence he had on my young life. I lived with my cousins when I first moved to Ohio, and again during my first year of PA  school. Those years were difficult for me. I had made some choices that led to finding myself in situations that I never expected to be in. Nick helped me to shine the light of God's truth on my life, and my trials. If you have been following my blog you will know that his influence has turned from that first trickle of truth, to streams of living water that have washed over every difficulty I have encountered since. He was a steady presence in my storm, and served as a truth-bearer, helping to point me back in the right direction. I am forever changed by his love and kindness.

Sometimes we aren't allowed to know complete healing while we walk this earth, and that is so hard to understand. Nevertheless, in the struggle there is always hope. Cling to the unfailing love of Jesus, and never let go. His purpose, and His promises will always prevail.

“Blessed is the man who trusts in the Lord,
gwhose trust is the Lord.
 He is like a tree planted by water,
that sends out its roots by the stream,
and does not fear when heat comes,
for its leaves remain green,
and is not anxious in the year of drought,
for it does not cease to bear fruit.”
Jeremiah 17: 7-8

April 2014

April 2015
One year later. 
One year stronger.





Tuesday, March 24, 2015

The Walking Post


Need a little inspiration today?

She's walking. Just typing these words makes my heart just burst into a million pieces of overjoyed.

















When I said in January that this would be the year we would see Meghan walk, I didn't expect to be writing a post about it so soon! Something about that 3rd birthday.....She is able to consistently take 10 steps on her own, and when she falls, she immediately finds a way to stand back up and keep going. This is one determined little lady, let me tell you!  Her walk is far from typical, and she has a lot of work to get stronger and improve her balance (she still topples over a lot), so a couple weeks ago we were able to purchase a walker for her. It helps her keep her balance, and improves her foot position and gait.She's pretty proud of herself:) She continues to make huge strides with her vocabulary and comprehension, and she just started preschool! Because she is on an IEP (Individualized Education Plan) she was able to begin a special needs preschool as soon as she turned 3. She has been getting acquainted with the teachers and therapists that will be working with her at school, and has really enjoyed it so far. We can see how much she will benefit from being in an environment with her peers. I am overwhelmed with gratitude when I look back on how far she has come in her three years. More importantly, I am overwhelmed by the knowledge that it doesn't matter. Regardless of what her abilities are or are not, the abilities or disabilities are not the focus. They are a just part of God plan for her life, and we get to sit back and enjoy watching His purposes being revealed one step at a time.

I know I've been a little quiet around here lately. It's been hard to write. I have been navigating through this phase of my treatment really well physically, but emotionally it's been a time of reflection and renewing. Long after the diagnosis and initial rally into treatment comes the time when you have to figure out what your life looks like after cancer. Nothing- and I mean NOTHING remains the same, and in some ways that's a really beautiful thing, and in others it's still painful. Events are marked in my mind as "before cancer" or "after cancer", as it is with any major life trauma, and somehow you have to adjust. Yesterday marked one year since my initial biopsy. It's really hard to believe I have been "in this" for a year. It gets harder and harder to head back into the cancer center every 3 weeks. It's difficult to continue moving forward when you feel stuck in the treatment phase. Only 3 more infusions to go though, and I am really looking forward to being finished. I am hopeful that when I have my mediport removed that it will finally feel like my body can move on. I can make that transition from a cancer patient, to someone who has a "history" of cancer. Almost. There. Blessedly however, the Lord has been revealing a little part of the purpose in the pain. I have been able to connect with other breast cancer patients and survivors and develop friendships that are so precious to me. I have also been able to offer encouragement and hope to those just starting their journey. If the Lord can use this experience for His glory, what more could I ask for? It is the deepest form of soul satisfaction that I can think of. There is infinite hope, overwhelming grace, and radical love, wrapped up in our Savior who pours it back out on each of us. He is the reason I can be reaching the end of this marathon of sadness, and be on my knees grateful for the experience. Almost there.

"Therefore we do not lose heart
Though outwardly we are wasting away,
 yet inwardly we are being renewed day by day." 
 2Corinthians 4:16

Sunday, January 4, 2015

Happy NEW Year

Happy 2015! From our family to yours, we can certainly say we are glad to ring in this new year. I had hoped to squeeze in a Merry Christmas post,  but this last month was a little rough on the girls. Both were very sick, and Meghan ended up back in the hospital for low blood sugars last week. So far all we can tell is that she is a kiddo with very little reserve to fight a prolonged illness. Testing in the hospital showed that her adrenal glands are functioning normally, and so all we can say now is that we know we have to be cautious when she is ill. We were very happy to take our New Years Eve and turn it into a mini Christmas do-over with Meghan! She has been back to her spritely little self these last few days, eating way more by mouth than she typically does, and busting out all her songs. Ten to one she can out-nursery-rhyme you:)

These last couple of months were light on follow up appointments, but we did see her neurologist before her first hospital stay and she got rave reviews despite him being a little puzzled as to why her balance is so off. We reviewed her most recent MRI's and the neurosurgeon feels that her Chiari malformation is stable (a possible cause for her balance issues) so we are staying the course with therapy and helping her to become stronger. She has been cruising like a maniac, and has started to take two or three independent steps in between people she knows will catch her when she falls:) I am so proud of this kid it hurts.

It's amazing to think of all we have been through over the course of 2014. Back when I first began my treatments, I couldn't begin to conceptualize how long and how hard I would have to fight both physically and spiritually over the course of being "sick". Here we are 9 months later, and finally I feel like we are in the home stretch. I am still getting the infusions of Herceptin every three weeks, and there is only one other pesky thing to check off the list- the "other side". When I first had to make a decision about surgery, I felt we made the best, safest decision given the information we had at the time. I had no idea I had cancer in my lymph nodes, or that I would need radiation, or to be frank, how utterly strange I would feel with one breast instead of none. I am moving forward to complete a double mastectomy, and no, I am not having reconstruction. I have gotten a lot of strong reactions to that one- most people choose to have reconstruction especially when they are young. Because I had to have radiation, my skin and chest wall are fibrotic and scarred. To have reconstruction now would mean major, major surgery, skin grafts, and a very long and painful recovery for a result that I may or may not even be comfortable with. This time, for me, less is more. I am very much looking forward to being on the offense on January 13th, doing everything I can to make sure that I am here to live out my belief that it's so much more about who you are on the inside, and that I am here to teach that to my two precious girls as they grow up. Don't get me wrong- I have agonized over, prayed about, and shed many tears over this decision. It is not one I wish I had to make, or live with, but somewhere along the way I have begun to let myself believe that I am who God says I am, and that has nothing to do with how I look on the outside. He is changing me, stripping me of the worst parts of who I am and refining me with His fire. You can only imagine how stubborn I am if this is what it takes:) This "fight" is so much more than physical.

I took a look back through all the pictures I took in 2014. I saw some sadness, and tears, but overwhelmingly I saw joy. I saw my little girl turn into a little kid, losing her first tooth and running off to kindergarten. I saw my baby become a toddler, and smile through every one of her trials. I watched my husband as he lived out every day his promise to stand by me in sickness, holding our family together with the strength of our Savior. I saw solidarity, support, spectacular friendship, and love. So so so much love, and laughter in spite of a mess. If 2014 was about endurance and survival, 2015 is about overcoming and thriving. It is the year I will get to say I am cancer-free. We might, by the grace of God, see Meghan walk.

It's going to be a good year.



"And He who sits on the throne said, 
"Behold, I am making all things new." 
And He said, "Write, for these words are faithful and true."
Revelation 21:5

Monday, December 1, 2014

Highs and Lows

So I started to write an update about regular life, and never got around to posting it. Meghan however decided it was time for an update so here goes...(and I'm working on very little sleep so bear with me).

She had had a bit of a rough week with an invasive test of her urinary system. Meg is really never dry, and has not ever been, and with her history of a tethered spinal cord, she's at risk for damage to the nerves that help control urination. She had to be awake for the testing to be accurate so she had to endure some difficult moments. Out of that we found out that she is in fact incontinent and will not be able to hold her own urine without surgery. The catch is that if she did have the surgery, she wouldn't be able to urinate at all without a catheter. Major bummer. In the grand scheme of life, not a huge issue, but my heart breaks for her self esteem and quality of life in the future. She came through that ok, and we enjoyed a wonderful Thanksgiving with family. 

Saturday evening we got to hang out with Meghan's runner Dawn and her family. She was totally fine and we had a fun evening. Yesterday when I got up, Meghan was still sleeping, which is unusual- she's usually my little alarm clock. When she was only stirring at 9, I decided to go in and check on her. I'm glad I did because she was lethargic, and began vomiting. I discovered that her overnight tube feed had not run in as it should have, so I thought maybe she needed some fluids to get her going. I gave her pedialyte and she drank some water but continued to throw up. Since she was still acting really off, and she didn't have a fever to point me to a clear viral illness I became concerned about her shunt and we decided to head into the ER. After we got her all checked in, they tested her blood sugar and it was really low. That hasn't ever happened before. We got an IV in and gave her some sugar, but she didn't perk up as expected. The neurosurgery team came and ordered tests for her shunt. After we were (thankfully!) able to rule that out as a cause for her symptoms they admitted her for her low blood sugars. They disconnected her IV for the ride.
  After we got settled upstairs, they rechecked her sugar. It had dropped again. After some more sugar through her IV, we tried giving her her regular feeding through her tube. At a slower rate she dropped her sugar yet again, but after we bumped her up she began to stabilize. This morning she's doing much better and they are getting her endocrinologist to come and consult today and help us figure out what's going on. 

Thank you all for continuing to pray for her. We just continue to take each day as it comes by the grace and strength of the Lord. 

Big sister face time makes for some good medicine:)

"Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, “The Lord is my portion; therefore I will wait for him.” The Lord is good to those whose hope is in him, to the one who seeks him; it is good to wait quietly for the salvation of the Lord."
—Lamentations 3:22–26