"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, December 1, 2014
Tuesday, September 23, 2014
Tuesday, September 16, 2014
Thursday, September 4, 2014
And to my husband, who never complained about taking care of the kids, the house, and everything else so that I could rest, and who still makes me feel beautiful in spite of how different I look, you are a testimony to commitment and love, and the meaning of "in sickness and in health". You are my earthly rock, and I love you.
And to my kiddos, who bring me so much joy in the middle of all of this. Addie said yesterday "whoa mom! You shaved your eyebrows!" Well, not really kid. She also told me later that if you fart in someone's face their eyes will turn pink. Good thing this is my last treatment.
The sweetest sound! Onward!
Tuesday, September 2, 2014
The summer of chemo is coming to a close!! Tomorrow is my LAST chemotherapy treatment, and saying it's a relief is an understatement. It's been a challenge to write through this process for some reason- I have started blogs and left them unfinished. The emotional ups and downs of coping are very real. Cancer affects every single aspect of your life, and redefines how you view so many things...but many of them one hundred percent for the better. Make no mistake. This experience has changed me, and it's not even close to being "over". After chemo, I get a little reprieve and I start radiation on October 6th. Because my cancer was on the left side, the radiation will affect my heart and lungs. For this reason, I am going to have a newer type of radiation which is cardiac sparing. They are finding that as more and more women become long term survivors of this disease, they remain cancer free, but suffer from heart failure, and effects of scar tissue on valves and lung tissue. We are really blessed to have this available to us. It unfortunately means Monday through Friday trips to main campus every day for 6 weeks, but the inconvenience is worth it to try and prevent as many long term side effects as possible. I will also continue to have the targeted therapy trial drug infused every three weeks for a year, but at least the really hard stuff will be behind us by Thanksgiving:)
Incidentally, September is Hydrocephalus Awareness month, and I figure we are way overdue for a Meghan update! We have enjoyed a great summer with her. We have done NORMAL. We have done playtime, and splash pads, and playgrounds, and thanks to some new equipment that was loaned to us, Meg has gotten to have some great experiences. She has continued to have all her therapies, and specialist follow ups, and until last week, things were mostly status quo. Meg has X Rays taken of her spine every 6 months to assess both the curve in her upper back, and the instability in the bones of her cervical spine (neck). We knew she would definitely need surgery at some point, and have been communicating with a neurosurgeon in Utah that specializes in her type of condition (for anyone who is new to Meg's story you can read about Klippel Feil Syndrome HERE). I got a call from her surgeon on Friday who said that he thinks her most recent films show that her instability is getting worse. She was already scheduled for an MRI of her brain and spine next week, so were are trying to get additional images added on as a starting point. If the MRI shows the same instability, we will get a CT scan to look at her bones to assess their maturity. If they are ready for hardware, we may be traveling to Utah sooner than we thought. In the meantime, I am alternately afraid for her to fall since she is becoming so much more mobile (she is cruising like crazy!), but still cannot stand on her own. Falling for her could be devastating if she fell in such a way that her neck moved enough to damage the spinal cord, so we continue to pray that she will be protected from injury until we are able to get her to surgery. While she is sedated for her MRI, she is also going to have some minor ENT surgery, a g tube change, and an ultrasound of her kidneys and bladder. She may have had more nerve damage than we thought originally from the tethered cord, so the ultrasound will help us determine that (and we get to add another specialist to her list...). Nothing like making the most out of a day of sedation!
So, we continue marching ahead. We have been blessed with some incredible people helping us through this season of our lives, and God has shown Himself faithful to our family over, and over, and over. Lavishing love, infusing with strength, and enabling a type of bravery I could have never known first hand without this specific experience. Anytime I feel like I am struggling, I look to this perfect little gift He gave me to remind me of what it looks like to be brave. To me, it looks a lot like Joy. The kind that can only come from Him.
A little peek at the rest of our summer! During my good weeks, we made the most of LIFE!!
|Testing the waters...|
|Playing at the Inclusive Playground- awesome!|
|First Pony Ride:)|
|And this happened. I still cannot believe it!!|
|And yeah, we met Mandisa! So cool!|
Sunday, July 13, 2014
The night he died, we sat down to dinner and Addie said grace for us, at the end adding, "and Jesus, please take good care of Duke in heaven".
I'd like to think that he's curled up at His feet.
Rest in Peace buddy.
Wednesday, May 28, 2014
|High Tea with a dear friend:)|
|Being a good sport:)|
While I was infusing we met with a nutritionist, and a social worker. The nutritionist discussed ways to cope with some of the appetite issues while on chemo, and the social worker came bearing gifts! I was given two pairs of fancy earrings to make me feel better about my impending baldness, and a little package from another young mom who just finished her journey with breast cancer. A book, and a pink quilt with scripture written all over it.
What a surreal experience to be walking through- I was extremely grateful that day for the company of my husband and dear friend. That night wasn't too bad, and the next day I just felt "off", but well enough to go get a shot of bone marrow stimulating medication (so my body can still try and fight infections while on chemo), and have a delicious dinner at Chick Fil A with some of my favorite special needs moms!
|These are some of the most incredible people I have ever met. Inspiring, and encouraging are understatements!|
Fortunately, cancer doesn't stop life from happening, and over the last week we had follow ups for Meghan with her neurologist and developmental pediatrician. She had testing to see where she falls on the spectrum with typical children. These appointments used to be such a source of anxiety for me, and now they aren't! It doesn't matter what she is or isn't doing- I just love watching Meghan be Meghan. I love watching other people marvel at how far she's come in 2 years. Sure she can't stand up on her own yet- go sing her a song. I dare you not to smile:) Both her neurologist and developmental pediatrician say she's cognitively and socially "right on track". This appointment incidentally, was with the same neurologist who gave us a "very poor prognosis" after reviewing her fetal MRI. We love him, and we know he is obligated to tell the truth, but I love that two and a half years later, she was clapping, singing, and chatting her way through that appointment:) Praise God for such a miracle.
|Introducing Meghan to Charming Charlies after her appointment:)|
The rest of the weekend was spent just moving forward. Sometimes all I could do was just sit. The type of fatigue produced by chemo is unparalleled. Couple that with some unpleasant side effects and it's all you can do to just be. What a strange thing for me- not "doing" anything to fight (I am a doer!). Fighting means taking action! Fighting means accomplishing something! Yet, in the height of the physical battle, I hear God whisper "be still". Sometimes fighting means enduring. Sometimes it means chosing to focus on the peals of laughter coming from 4 happy girls running through the grass instead of what you feel like at the present moment.
So sometimes I will have to be still, and I am learning to find the good in that too.
|Being still, with a new haircut:) I wanted to lose some of it on my own terms.|
|Addie helped me try out wigs! This one looked way better on her;)|
Thank you for continuing to pray for our family!!!
Wednesday, May 14, 2014
Things are still crazy around here. After the surgery I developed axillary web syndrome which limits range of motion in my left arm due to "cording" or hardening of the lymphatic vessels which were damaged during the surgery. The cord acts like a tether, and at about 70 degrees of outward motion laughs at me when I try and reach for anything. This limits my ability to drive safely (and blow dry my hair- good thing I won't have to worry about that soon, right??), so with all the testing I have been going through we have been very grateful for all the help driving the girls and I around!
So life goes on. Addie finished preschool this week (sniff!) and is gearing up for her first dance recital. Meg is practicing her pulling-to-stand skills, and has been learning some sight words thanks to a very dedicated Grammie. Joe is taking care of nearly everything I can't, and does it all without complaining. (Honey, you deserve an award. I love you.) The lines between disbelief and reality are developing some clarity, and anxiety and fear can come easily if I let myself "go there". However, I am waking up each day choosing to focus on the hope I have in Christ. Your world may rock, the earth may shake under your feet, but your feet will land on the rock of ages when you fix your eyes on the everlasting. Study drugs or not, I have the ultimate survival advantage. Hope.
The Lord’s word is flawless;
he shields all who take refuge in him.
For who is God besides the Lord?
And who is the Rock except our God?
It is God who arms me with strength
and keeps my way secure.
He makes my feet like the feet of a deer;
he causes me to stand on the heights.
He trains my hands for battle
|Impossible not to smile back.|
|Getting a workout in!|
|Officially a kindergartner.|
Wednesday, May 7, 2014
With all that said, I wanted to share some of the things that have been organized by my friends. All we ask for are your prayers for our family during this time, but if you feel led to do something else here is a link to my website: We Are Sarah Strong. It has links to a meal train, fundraiser, and our blog. There is a T-shirt fundraiser that ends tonight:) Also, my salon, Salon Evangelene in Medina is hosting a CUT-A-THON to benefit our family on May 16th from 5-8. The salon has an incredible team of very talented artists who are all volunteering their time and efforts, and we are so grateful to them for such a gift. Click here for more info!
We met again with the oncologist yesterday, officially consented for the clinical trial, and have a start date of May 21st for chemo. A lot will happen between now and then- testing, placing a "port" (permanent IV access), more appointments, etc. The drain is scheduled to come out on Friday morning (finally!) with my scans right after. Upheaval of the usual routine is an understatement, but thanks to lots of help we are meeting the challenge.
You know how people say "God is faithful to provide"? He does, and he is. We truly believe that every good thing comes from the Lord. He has provided us with "immeasurably more than all we ask or imagine", through His word, and through all of you. Because of this our needs are being met exactly when they need to be, anxiety over the future can rest, and we continue to praise the one who gives us HOPE beyond hopes.
Love to you all.
where does my help come from?
My help comes from the Lord,
the Maker of heaven and earth.
|Drains and all, we couldn't miss the Suhaj wedding!|
|Because it is necessary that you see this cheese face:)|
PS...a little Meghan update while we're at it! She got her walker on Monday and is testing it out, and is pulling herself up to stand on everything she can. Her vocabulary is expanding, and her communication improving as we work with her. Her favorite song is still "if you're happy and you know it", and she always claps on cue. I cannot possibly harbor any grief when I look at her sweet face- her little voice is healing balm for the soul.
Tuesday, April 29, 2014
My lowest point was over the weekend. All the mental prep in the world can't quite measure up to staring yourself squarely in the mirror for the first time post-mastectomy. What surprised me the most was the shape. Instead of a smooth, flat remnant, there is a hollowed out place. So very different than the picture I had in my mind. It felt almost like more was taken from me. Weighed down by this reality, and the knowledge that once I am past this surgery there is still another mountain to climb made for a spiritual struggle of will. Sometimes it takes faith over feelings- choosing to believe the truth of His promises despite the lure of darkness. I am rejoicing in the fact that His truth wins every time. Sunshine helps too:)
I have been thinking about Meghan a lot these last few days. The surgery she has endured without a choice. She accepts it because it is her reality. She doesn't know a life any different than the life in which there are extra struggles, except to her, it's just what's normal. She keeps fighting, progressing, and moving forward in spite of the body she has been given. If this sweet girl can press on, so can I. I have learned that "the worst thing that can happen"....happens. And it's still ok. In fact, it's even better because no matter what you fear was taken from that hollowed out place is nearly always filled up beyond measure, and overflows with things that are so much better than what you had imagined you would lose. All things for good.
Next week we start the ball rolling towards chemo with some tests and appointments to begin the process. I am pretty sure I am going to participate in a clinical trial in which I will receive what is considered standard chemo, and depending on a computer randomization, one additional drug to try and treat the cancer. It's going to be a long process- 18-24 weeks of chemo even before the trial drug. The mountain is waiting.
And it's still ok.
Doggie Update: We found out that Duke's tumor that they removed last week was in fact cancer. The vet gave him 2-12 months. I can't hardly believe this, but I am glad that we know. He will definitely be getting some extra treats and love for as long as we are lucky to have him around.
AND- thank you so much to everyone who has sent cards, gifts, texts, donations, bought T-shirts, prayed, served and LOVED us this week. We are so completely humbled, and grateful.
Friday, April 25, 2014
My surgery went as well as it could have. The first few hours after were really rough- I was pretty sick from the anesthesia, but once that wore off I have felt ok. Unfortunately they did find cancer in my lymph nodes, meaning it has spread at least a little bit. They took all the lymph nodes under my left arm and we are waiting on the pathologist to tell us how many nodes total were positive. Because my surgeon had to take so many, she also intentionally cut a nerve branch which has left me with some numbness to my left arm. I also have 2 surgical drains in place which should come out in a week or so. Once they are out, I will have some additional testing to see if they can identify whether or not the cancer spread to any other organs or to my bones. Chemo is a definite now, and radiation is highly likely as well. Reality has definitely set in.
I spent a little time yesterday struggling with all of this. For the first time since the diagnosis I am scared. My body is different now, and the knowledge that chemo isn't just a precaution because of my age- that's it's a necessity- well I am just sad, and scared, and shocked. But, I refuse to give in to any sadness. I refuse to wallow in the anxiety of what "may be". For the first time I feel I am ready to fight, knowing that this is about not only surviving through cancer, but thriving in the midst of it. This is an absolutely impossible feat without God. He allowed this to happen to me, but he also promises that he will never leave me or forsake me (Deut. 31:6), he goes before me (Isaiah 45:2), and he will fight for me (Exodus 14:14). There is assurance from every angle that he is walking with me through this trial. And there is assurance of his love. We are promised suffering in this life, but we are also promised hope because of his perfect love.