~~~standing together as Ansley battles non-hodgkins lymphoma~~~

ways to serve

"...for this reason also, since the day we heard of it, we have not ceased to pray for you..."

Thursday, December 30, 2010

rely on the love God has for us

Well, another day is almost done. We spent the day at the outpatient pediatric cancer clinic. The nurses and doctors are wonderful but it is still one of the hardest places I have ever stepped foot in.


Ansley had 3 different chemo treatments today. Two were given through her port and then then spinal tap chemo. She did well. Maybe over time this gets easier.....I really don't know that it will though. We were there from 8 to 3 and afterward I felt like I had run a marathon. I think it is mostly an emotional and mental marathon these days. It is just draining mentally. Matt and I got in the car afterward and just sat in silence. Nothing went wrong, it is just hard. One of our friends explained it as a feeling of numbness. I think he's right. But, days like this feel raw. It feels like a giant wound that someone is pouring salt onto.

I am not defeated, but this really is our reality right now. I feel free to feel like I am on a roller coaster. But, in the midst of all of this, there is a verse I want to come to know and trust more and more.


I John 4:16, "We know and RELY on the love God has for us."

I am relying on that love on days like this. Painful as it may seem, it is good to be in a place where I can't rely on myself. I HAVE to rely on God. I know that self-reliance is something God hates. And, there are times when I feel like I am enough for myself. I know in my head I am not enough but sometimes, when life seems manageable, I can fall into the pattern of self-reliance. Well, friends, that is not possible right now. And so, I want to know and rely on the love God has for my family. Please pray this verse for all 7 of us.

at the clinic on Thursday morning

Wednesday, December 29, 2010

through this journey

As one of Ansley's grandfathers, I am overwhelmed with emotion. not sure I can describe all of them but the dominant one is peace............knowing that God is healing our precious Ansley, and through this journey we are learning where our dependence truly resides. He is answering our unending prayers for Ansley's complete and quick healing and for our strength as a family to support Ansley and each other through this. God is speaking to me daily and I feel His comfort, healing and faithfulness loud and clear.

To all you prayer warriors, your support is amazing and very much appreciated. Your prayers, love and kindness have been such a blessing to Ansley and our family and will get us through this a with a stronger realization of God's grace and love for us all. 

Thanks to all for your prayers and love.......please stay vigilant in your prayers for Ansley and your expressions of love for our family.

God Bless,
Charley (aka "JoJo") 

Monday, December 27, 2010

to God be the glory

Great day today.

I believe Ansley is eating more than any of us! The doctors told us the prednisone would make her really hungry and boy were they right. But, I am so thankful she is eating well. She seems to be pain-free and full of spunk. So far, she hasn't had stomach problems from the chemo. What a blessing that has been.

More hair coming out today. She doesn't seem bothered by it at all. She thought it was hilarious to grab her hair and watch it fall right out. Her siblings egged her on by laughing with her. Matt and I just sat and watched with our mouths wide opened. I wanted to cry but couldn't. Everyone else was okay with it and I needed to make myself realize it was just part of the journey. I have found a lot of help from people that have traveled this painful road before us. They all said losing hair was one of the toughest parts emotionally.

Trying to remember to take it a day at a time. I am glad Christmas is over. I am a little fearful for New Year's Eve and Day to come. But, we will cross that road when we get to it.

Thanks for your faithfulness in praying. Ansley has chemo on Thursday of this week. Please pray her counts are high enough that she can have the treatment. They have begun to drop, which we knew would happen, but they need to be at certain levels to be able to handle a chemo treatment.

Our family loves you all!

To God be the glory great things He has done! (and is doing!) (and will continue to do!)

Ansley is ready for the snow....a little bit late!

Sunday, December 26, 2010

snowflakes in Charleston!

choosing joy

Christmas at our house was a little different than years past.

The kids were very much the same. Excited, impatient, big smiles, so eager to see what is under all that wrapping paper. Matt was his wonderful, leader self. He opened the day with music and Bible time that focused us on what this day was all about- the gift of Jesus to us all!

Me, on the other hand, I was having a hard day. So emotional. So hard. So many "what if's" in my mind. I really allowed the unknown questions in life right now to take away the joy of yesterday. I think it's pretty normal, but I don't want to do it again. I remember reading something a while ago about not "misusing our minds." Misusing our minds includes thinking beyond today, worrying about what tomorrow will bring. God didn't intend for us to use our minds in this way. I am afraid I failed that yesterday. I am afraid I misused my mind.

Thankfully, I have a forgiving Father and a forgiving family. But, it taught me a good lesson. I have a lot of choices in how I use my days. I have been given a gift in today. I can either find joy in it or I can be numb to everything that day has given us. I want to choose joy. But, I am realizing I am going to have to fight for it! I have an an enemy that wants to capture my thoughts and steal these precious days from me. I choose to fight for my mind and my heart!!!

Please pray with me that my mind and heart will be joyful. Pray that I will not look beyond today. Pray that as a family we will not misuse our minds.

On another note, sweet Ansley's hair is really starting to fall out. She is frustrated because it gets in her mouth. We are not sure what to do. Do you go ahead and shave it off? Do you just keep brushing it until it is all out? We have never had to do deal with this before. If anyone has any suggestions, we'd love to hear.

We are overwhelmed with the gifts, cards, phone calls, meals, e-mails and letters we have received. Please know that all 7 of us are thankful for you. It has been a blessing to feel so loved by so many people. As life gets a bit calmer, I hope to give everyone a great big hug and say thank you in person. Enjoy this day.... it really is a gift!

Much love to our family, friends and faithful strangers,
Amy

Friday, December 24, 2010

glorious Christmas Eve morning


On our way to chemo treatment on this glorious Christmas Eve morning.

Thursday, December 23, 2010

excitement



Ansley getting excited about Christmas!

God is holding our hand


Today was a day of mixed emotions.

Ansley is her bubbly, opinionated self. It is a great gift to see her feeling well. But, she was changing her shirt today and with her shirt came a lot of hair. Maybe it's just me, but it seemed like a lot. I knew that this day would come soon. The doctors told me it would probably begin sometime around 3 weeks into chemo. We are at 2 weeks. I am sure it is a process, not just a one time deal that it all falls out. I think I sometimes forget that she does really have cancer. And the hair deal quickly reminds me of the hard truth that her body is not healthy. I am thankful that the chemo is working. I have to remember that as I watch other side effects of the chemo.

We are rejoicing this day that she has had 2 spinal tap chemo treatments and both have gone really well. We are also rejoicing that she has handled her IV chemo twice without getting stomach problems.

So, so much to be thankful for. Tomorrow we will go in the morning to MUSC for her 3rd round of IV chemo. Please pray that her counts are good and that they are able to administer the chemo without complication. Also, Ansley got sad today when she realized that she would have to have her port "accessed" again tomorrow. Accessing means putting a needle into the port so that the drugs that are administered can be given to her without giving her an IV stick in her hand. I think it sounds and looks scary to her. Please pray that she will not be frightened and that we won't have to hold her down while they access the port. It hurts so bad to see her frightened.

On another note, I have seen God move in beautiful ways in our marriage and in our family as a unit. Hard times like this have a way of either drawing you closer to each other or bringing distance. I have found great joy in living this painful story out with my best friend in the world, Matt. We had our first official "date" last night since Ansley's diagnosis. It was a really sweet time. I think we held hands and talked longer than we have in a while. I see him as my teammate and my advocate. He wants so badly to protect his family from pain and his attitude has been amazing.

The kids are doing better. Garrett has been struggling with nightmares, but other than that, I think us being home has brought a sense of security back to them. Please continue to pray that they will feel loved and important to me and Matt.

I hope that everyone reading this will be encouraged and find great hope in what God is doing. Yes, it is painful but God is holding our hand through it all. He is faithful and He is able. This Christmas will be different for our entire family, grandparents, aunts, uncles, cousins. I think it will be different in a good way. As we are weak, He is showing us how strong and mighty He is.

Merry Christmas, precious friends!

Monday, December 20, 2010

our eyes are upon You

Well, the day is done and now it's time to think through what all we did today. It was our first time in the outpatient children's cancer clinic. I was not prepared for how hard it would be. It was beautiful in one sense. A 10-year old girl was finishing her last chemo treatment today after a year of treatments. The entire clinic was celebrating with her. We were celebrating with her and we just met her today. But, these life situations have a way of bringing hope and joy and celebration into your life. Any family that can make it through this kind of pain deserves a major celebration. But, on the other hand, we met an 8 year old who has been battling cancer since the age of 3 months. She had a precious spirit. But, what a battle. 8 years of constant chemo, spinal taps, hospitalizations. Her dad was right there with her the whole time.

I was not prepared to see so many precious children who didn't look like they did 6 months ago. No hair, puffy faces from the steroids, all with ports and tubes with machines attached. It was more than I could handle a few times. Everyone told me that the first time is the hardest and then you get a little more used to it. Our precious Ansley is one of those beautiful children. She will soon lose her hair, she will get that precious "moon" face from steroids. And we will love her and give thanks for everyday we are given! There are so many families that are affected by this dreadful disease. I was nauseated to see how many families face this kind of pain.

It is hard to focus just on our pain when you see how many other people are in the same season of life. I am tempted to ask the why questions to God. Only 50 children per year get ALCL. Why Ansley, God? Why our family? I can't answer that right now. I might not ever be able to answer it. But, I am comforted by a verse in 2nd Chronicles. It says, "We do not know what to do, but our eyes are upon You."
That is what my heart is feeling right now. I can do nothing but fully surrender. I have no control over what happens to my precious Ansley. But, even though I don't know what to do, I will keep my eyes on Jesus!

Celebrate with us that today was sweet. Hard, but sweet. We feel like we have been given a precious gift in the 7 of us being together this Christmas. May Jesus be glorified and honored through this season.

Love,
Amy

done for the day



Enjoying a Cheesy Puff after spinal chemo today!!!

text update

just received this text from Matt:

Procedure done. Went well. We'll be heading out soon -
Ansley wants lunch at Moe's!!

Sunday, December 19, 2010

sweet moments

Friends,
I just wanted to clarify about the meals a little. The only things I think we need to stay clear of would be things like meat (rotisserie chicken, fried chicken, etc) that has sat under a heat lamp for a while.

Last night, Kay brought us yummy tacos! Things like that are perfect! I think Ansley ate 3 of them! She is pretty hungry all of the time from the steroids! Thanks friends.

Sweet moments around here this morning. They told us Ansley would be moody from the meds. But, she has been so sweet and she is always coming up to me and Matt and saying, "I just love y'all so much. Thank you for being so nice to us."
It is sweet to hear her say those things to us. I wonder if she knows how really precious they are right now. Maybe God is giving us a gift in her words. It strengthens me when she let us know she feels loved.

Keep praying! Our God is greater!

Friday, December 17, 2010

We're Home!!!


Thanks so much to everyone who has been praying for us and supporting us in a myriad of ways. We have 51 weeks of chemo to go, but we are so happy to be home! We hope to be outpatient for all of Ansley's chemo! Right now, a number of thoughts are swirling:


Ansley has missed her brothers and sisters tremendously! What a great homecoming!


We are blessed to be home - thanks to all of the excellent doctors, nurses, techs, etc. at MUSC! 7B has a reputation of being excellent, but we have truly experienced that. Thanks so much to everyone - Ansley sends a special thanks to Dr. J and Dr. K, Karen, Kim, Kelly (x2!), Jessica (x2!), and Seth the Night Ninja!


We are a bit nervous, wanting to make sure that we aren't being overbearing with cleanliness, but also doing everything right for a child that will have a compromised immune system.


We are tired and more thankful for our own bed than we have been in years!


We are so thankful for everyone's support - from those that donated to a fund for us at Charleston Delivers (thanks Grayce and everyone in the OR!), to those bringing meals, to Regan for posting the blog, to those that brought Ansley gifts, to the hundreds of people praying for our little girl and 4 other precious children. Thank you so much!


And, we are grateful to Jesus. We do not know the future, but we are thankful for a good prognosis and trust His plans for our lives and for our sweet Ansley. These days are not always easy, but they are good in a deeper way than we often know.


Ps 139:13-16:
13 For you created my inmost being;

you knit me together in my mother's womb.
14 I praise you because I am fearfully and wonderfully made;

your works are wonderful,
I know that full well.
15 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,

16 your eyes saw my unformed body.
All the days ordained for me

were written in your book
before one of them came to be.


We head back to clinic on Monday for intrathecal chemo! For now, it is back to Friday Night Movie Night in our home, a treasured tradition. We will be watching a movie that just missed this year's awards - "Alvin and the Chipmunks 2: The Squeakquel!"


Blessings to all of you! Celebrate the Advent of King Jesus!

prayer is awesome

Just wanted to say to those of you who came to pray for sweet Ansley this morning:

Thank you!

What a privilege to pray with such godly people!

You challenged me to pray and you encouraged me to keep praying!

I was amazed by your faith and felt like I was on holy ground as we battled for Ansley, Matt, Amy, Kendall, Morgan, Gavin, Garrett, and their entire family tree in prayer!

A very special thank you to Katherine V., who had the passion to do this and the tears to prove her tender heart, to Cindy who led the time with faith and gentleness, to Margaret, who kept our children and enabled them to have a special time of their own, and to Sally, who served us in a very practical way, by keeping the prayer requests before us on paper.

And a very special thank you to you, who prayed wherever you happened to be, for this family we love and for the King to be glorified in their lives. Fellowship is a beautiful thing.

And to King Jesus, the Name above all Names, who hears our prayers, and prays right along with us! We love You so much.

Thursday, December 16, 2010

theme songs

Here are the lyrics to "I Lift My Hands" by Chris Tomlin and "Our God". These are our "theme" songs for 2011. Please pray for us when you hear them. Our God is greater than any disease and any diagnosis!

I Lift My Hands

Be still, there is a healer
His love is deeper than the sea
His mercy, it is unfailing
His arms are a fortress for the weak

Let faith arise
Let faith arise

I lift my hands to believe again
You are my refuge, You are my strength
As I pour out my heart, these things I remember
You are faithful, God, forever


"Our God"

Water you turned into wine, opened the eyes of the blind there's no one like you none like You!
Into the darkness you shine out of the ashes we rise there's no one like you none like You!
Our God is greater, our God is stronger, God you are higher than any other.
Our God is Healer, Awesome in Power, Our God! Our God!

Into the darkness you shine out of the ashes we rise there's no one like you none like You!
Our God is greater, our God is stronger, God you are higher than any other.
Our God is Healer, Awesome in Power, Our God! Our God!
Our God is greater, our God is stronger, God you are higher than any other.
Our God is Healer, Awesome in Power, Our God! Our God!




grace

Another good day here on 7B at MUSC Children's Hospital. I can't tell you the number of times I have passed a sign that has said ,"this toy drive will benefit the children at MUSC Children's Hospital" at a store. I will never look at it the same way again. This morning Ansley received a precious book from the "Happy Cart." It is a donation based toy cart that comes through the halls of the children's hospital. We have benefited from these volunteers in ways I can't even explain with words. Ansley also got to see Woody this morning. Woody is a Golden Retriever that comes to love on the Leukemia, Lymphoma and other really sick kids on this wing of the hospital. That sweet dog brought a wonderful smile to Ansley's face.

It is sobering to see so much sickness. I am thankful that Ansley is doing well. But, there is and will continue to be an ache in my heart for all the brokenness you see in these precious children. We have had the pleasure of meeting so many amazing people like Margaret and her son, Kim, Seth, Jessica, Kelly, Karen and Dr. Kraveka. This has been the most life changing event I have ever gone through. People don't leave 7B at MUSC Children's Hospital the same as they came in. No, they leave very different. I hope I ALWAYS remember the experience of being here. When we look back in 10 years and our precious Ansley is healed, I still want to remember how well we were served and loved and cared for by everyone involved on 7B. Don't take today for granted. Open your eyes to the people around you. If they are hurting, love them. If they are rude, try to remember you don't know their story. You don't know what pain people live with everyday. Give grace after grace after grace to people. May they see Jesus in us and not someone judging them.

Pray that tomorrow's chemo goes well. Pray that our last night here on 7B will be sweet. Pray that our homecoming will be precious. I am filled with so many fears right now about going home. Here at the hospital the nurses and staff have cared so well for Ansley. Will Matt and I be able to do it? I am afraid. But, I move forward trusting that Jesus will be right there with us. Every step of this very long journey, Jesus will be right there.

Wednesday, December 15, 2010

Strange Normality

Today was a great day. Ansley was FULL of energy!!!! She played in The Atrium several times - painted, played restaurant, etc. She has also eaten better! 'Adult' mac n' cheese is her favorite item right now (which means non-Kraft mac n' cheese)!! Her dinner consisted of two helpings of that and french fries! Her snack today consisted of Oreos! We are just excited that her tummy is feeling better, her appetite is kicking in, and, well, that her bowels are moving! Considering how all of this started, that is a huge blessing.

Amy and I have had a strange day in the midst of this. We are thrilled to see how she is doing. In fact, it is hard to believe that she even has cancer. But, we also know that we have to be more careful than ever for her health. So, we are trying to let her be a little girl and enjoy her spunk, while at the same time beginning to feel very protective - wearing masks, being careful for anything she touches, etc.

All in all, we are all a little tired. We are looking forward to going home on Friday (if all still goes well) and sleeping in our own beds! We are looking forward to eating dinner as a family and having some movie nights and game nights.

Thanks to everyone who has been praying and who continues to do so! As we watch our little girl start to heal, this song from Andrew Peterson comes to mind:

Come broken and weary

Come battered and bruised

My Jesus makes all things new, all things new.

Come lost and abandoned

Come blown by the wind

He'll bring you back home again, home again.

Rise up, oh you sleeper, awake,

the light of the dawn is upon you.

Rise up, oh you sleeper, awake, he makes all things new.

Come frozen with shame

Come burning with guilt

My Jesus, he loves you still, he loves you still.

Rise up, oh you sleeper, awake,

the light of the dawn is upon you.

Rise up, oh you sleeper, awake, he makes all things new.

The world was good,

the world is fallen,

the world will be redeemed.

So hold on to the promise,

the stories are true, that Jesus makes all things new.

From Amy:

What a mix of emotions today. It feels so good to see Ansley playing and being her normal, fun self. And yet, at the same time, I ache thinking that my baby girl has cancer. How can her body be attacked by all these cancer cells and yet she can smile and play and laugh? What a glorious picture of her circumstances not owning her. She is stronger than me. She has no more "tubes" meaning she is off all IV medications and fluids!! That means the only thing still on her is her port and she will have that for a few years. She will have her next chemo treatment on Friday morning. Please pray her lab work shows that she is healthy enough for this therapy on Friday. If she gets it, then we can go home after it's done! We will come back in on Monday for her Spinal Tap chemo but it is outpatient and we can go home after it is done.

I feel like I am on a roller coaster with my emotions. One minute I am calm and then I see something as simple as her precious little shoe. Then, I begin crying and my heart hurts so bad it feels like it could burst. I am learning that trusting our faithful Father is the only way to live. I'm not saying it's easy, in fact, I am finding it not so easy right now. But, I was never told trusting would be a breeze. I am told something much better than that. I am told He is faithful and He is a rewarder of those who seek Him. Now that's something worth trusting!

come pray for Ansley!

Hi Praying Friends,

A special prayer meeting has been scheduled for Ansley
and her family

on Friday, December 17, at 8am,
at PCA in room A101.

Kids are welcome!

Thank you so much to Katherine V. for organizing this!

If you are unable to come to this, but would like to pray with us anyway,
please hit "comments" below and type out your prayer for Ansley!
Or pray whenever you can. We'll take it anytime!

Tuesday, December 14, 2010

important

This day has been busy.

It has been filled with really important things like nail painting, playing restaurant, listening to wonderful piano playing by Ansley, painting pictures of boats, rainbows and houses, and playing Zingo. Wow, has it been a day well lived! Why it took cancer to make me realize this is sad. But, we were given a real gift today. Fun memories made with our baby girl!

Thanks for your prayers. Headaches went away, redness on face went away and Ansley smiled today more than I have seen her in a week. It has been a busy day....filled with very important things.

Don't forget to fill your days with important things, too.
We all need a good reminder of what's important!

All my love to everyone reading this.

thanks


Thanks to Miss Kim! Ansley loves her new Ariel PJ's!

Great News!

Amy and I are rejoicing this afternoon. Ansley has had a banner day! We all walked to The Atrium twice to paint and play today. We played restaurant, and she fed me and Amy well! She also played the piano for us! What a sweet blessing of a child she is!

This was exciting and strangely hard at the same time - thinking of all of the times in the past when I was too busy doing work at home to play, and somewhat thinking about whether these memories will be there to be made in the future. But, Jesus told us in His Sermon (Matt 6) that we can't add a single hour to our life (or Ansley's). But, He also tells us that we can trust Him implicitly, and He proved that with the greatest sacrifice. So, for today we will rest in the moment to moment goodness of His grace and our beautiful little girl, as well as our other two beautiful ladies and two brave little men!

Her oncologist just came by and said that she is VERY encouraged with Ansley's progress. Labs and chest Xray looks great. They said that she looks good enough to go home Thursday, but we will stay through Friday morning when she gets her next major chemotherapy infusions and make sure that she is doing well after that.

I also want to take the time to say that I am married to the greatest woman in the world - no offense to many readers! But, wow! I have learned a ton from Ansley through this, and I have learned a ton from Amy. What a living, breathing picture of a Proverbs 31 woman! We are told that "he who finds a wife finds a good thing." How true that is! I am so thankful for my Amy Beth, my beautiful, precious bride!

Thank so much for supporting us!

Freedom!


No tubes for now!

Ansley was able to go to the Atrium with me and Amy... and no pole for fluids, chemo, or anti-biotics!!

Our Future Picasso?


We made it to the Atrium, a wonderful playroom at MUSC for sick children! What a blessing!

Giving Suggestions

To so many dear friends and family... Lots of people have asked what they can do for Ansley - toys, games, etc. We are so blessed by the overwhelming response! Thank you so much! However, we are so blessed that we have more than enough right now. But, there are lots of kids here that do not. Many of the children are not from Charleston and many do not have families/friends with financial resources. Thus, one way that you could really give to us would be to share with others, particularly during the season of Advent of King Jesus. Betsy McMillan from MUSC Child Life helped me with the following options of ways to give that could make a big difference:

1. For tangible toy giving (local), go to www.musckids.com/childlife. There you will find information about holiday toy giving and their wish list.
2. Monetary donations go through the Children’s Fund, which is the pediatric branch of the MUSC development office www.musckids.com/giving. There you can find the link financial contribution where different children’s hospital services can be specified to give to (children’s hospital fund, pediatric oncology, child life, etc…). It would be a blessing to Ansley and us if you gave to Child Life or Pediatric Oncology, but giving to any category would be great.

Please do not feel like you need to do anything. But, if you were considering giving, even $10 would be great. The Child Life staff here is WAY underfunded for all of the services they provide, and they are a TERRIFIC blessing to the children that come through the MUSC clinics, ER, and Children's Hospital. Also, if we know you well, we'd love for you to give to others in this way - and we'll let you serve us later as well! :-)

In all seriousness, giving to these programs has taken on a totally different meaning over the past 5 days.

Blessings to you!

Matt

my times are in Your hand

Today is a new day!

Ansley and I slept very well last night. Matt went home to love on the other kids last night. There hearts are hurting and scared. Their Daddy helps lessen the hurt.

Please pray for Ansley today. She has complained of a headache for 2 days now. Not sure what is going on but I hate seeing her hurt. She is also having some red flushes coming up on her face. Not sure what is causing them but please pray the doctors can figure out what is bringing them on.

We will see what her latest chest x-ray looks like in a few minutes. I hope it is much better than yesterday but if it's not, I don't want to live in defeat. I won't live in defeat. There is way too much to give thanks for today.

Thanks to everyone who reads this. It is hard to be here and not have my friends and family able to surround us at the hospital. It is for Ansley's health that we can't have lots of visitors. But, writing helps me feel close to everyone. It has helped me cope and helped me be real with myself.

my prayer this morning is that I would know that Jesus is sitting right here in this hospital room with me. His heart is hurting for Ansley just like mine. He aches for Kendall, Morgan, Gavin and Garrett just like my heart does. There is nothing I will experience today that He won't be a part of.
Please pray I remember this today.

But I trust in the Lord, I say You are my God. My times are in your hands. Psalm 31:14
I trust you Lord, You are our God and I know that Ansley's times are in your hands.




bases covered!

you guys are the absolute best. i am continually amazed by the outpouring of love and offers of help. matt and amy are beyond thankful!

just in case you didn't know, matt's parents and amy's parents are both in town for at least the next month. matt is getting to take some time off work, and both of his brothers and their wives are in town (and cousins!). a beloved aunt lives in town, as well as amy's sister, her husband, and their soon-to-be four children! we praise God that they are surrounded by real flesh and blood family!

as far as basic needs go, (food, playdates, spend the nights, rides), the BASES ARE FULLY LOADED. matt and amy have been meeting with oncologic psychologists who have given them tons of practical advice for the health of their family in the next weeks and months:

1. the kids needs to sleep in their own beds, in their own home, every night. they need to be shuffled around as little as possible (even though we all love them and want to take them with us to all kinds of fun places!)

2. amy's parents will be moving in with them for awhile, so keeping the same routine is so important. there may be a need for rides to and from school in the future, and when the needs arise we will definitely use this blog to communicate those needs. For now, though, amy's mom and dad, and matt's mom and dad, have it covered.

3. you guys are so generous with offers for food. they continue to have enough for now, and we promise that we will post when we are ready to set up a meal schedule.

4. no playdates for now. the need to be careful with germs is so high right now, as well as the need to just keep the kids at home with those closest to them. some of the things you have offered to do with the kids sound SO fabulous, and it is so appreciated! thank you so much for offering to take the kids. with this long treatment stretched out in front of us, there will probably be a need one day for that, but for now, time with family only.

thank you so much for everything!! we will keep in touch with you about every need that arises!

Monday, December 13, 2010

from Amy

IT IS 9 O CLOCK MONDAY NIGHT AND I GET THE PLEASURE OF LAYING NEXT TO MY BABY GIRL AND WATCHING HER SLEEP. I WOULDN'T HAVE SAID THIS A WEEK AGO HAD SHE NEEDED ME IN THE MIDDLE OF THE NIGHT. BOY, HOW MY MIND HAS CHANGED. SHE IS DECKED OUT TONIGHT IN FAKE NAILS (THANK YOU TACKETTS), BEADED BRACELET ( THANK YOU TO WHOEVER GAVE THE CINDERELLA BEADS), HOLDING NEW ADORABLE PUPPY SOPHIE (THANK YOU BLACKBURNS), WRAPPED UP IN CINDERELLA BLANKET (THANK YOU TRAYNHAMS), LAYING ON PILLOW PET ( THANK YOU WILLIAMS), WITH CHRISTMAS TREE AND ORNAMENTS RIGHT NEXT TO HER (THANK YOU THOMPSONS, VASKOS, STADALSKYS). SO MANY OTHER THINGS FILL THIS ROOM TONIGHT. IT IS A ROOM FILLED WITH SOME PAIN BUT LOTS AND LOTS OF LOVE. I CAN REST TONIGHT KNOWING I TOLD HER I LOVED HER, I SHOWED HER I LOVED HER, AND I TREASURE HER MORE TODAY THAN EVER. MAY THAT BE MY SAME GAMEPLAN TOMORROW. GOD, GIVE ME TOMORROW WITH MY SWEET ANSLEY. PLEASE GIVE ME TOMORROW.

does it get any sweeter?

beautiful


My precious girls!

Ansley up and dressed - Gator cheerleader outfit and red snow flake tights were a must!

today

It is amazing the difference a day can.

I mean that in a good way today but I also know what it means in the bad sense as well.

But, we have been given a gift today.

Our precious baby girl is more alive today than I have seen her in almost a week.

I want to learn to remember the gift of today. Today only.

Who knows what tomorrow will bring? God does.

And He is the only one that needs to know.


So, rejoice with us in this day!!

Ansley's brothers and sisters are coming to visit today. What a glorious picture this will be!

We will post the first picture of the 5 of them together later today.


Everyone rejoice with us for TODAY!

Thank you God for the gift of TODAY.

Trust and thankfulness flow from us TODAY.

-Amy

My Straw Is Out!

Last night was a good night of rest! Ansley did great and her body is doing better. The pleural effusions are getting better. In fact, her chest tube ("my straw" as she called it) was taken out this morning! She received her first dose of intrathecal chemotherapy (injected into the spinal fluid). She now only has her port! What a blessing. She does have a persistent headache that we pray will resolve - not uncommon after this procedure.

Our other children are struggling a good bit. But, they are brave. Gavin went to school today because he wanted to tell his class that Ansley had cancer. He answered the questions that he could and then his teacher (awesome Mrs. McG!!) asked if anyone wanted to pray for Ansley. Gavin said everyone raised their hands! What a precious group of 2nd graders! May we be like children in this!

Listening to Andrew Peterson right now and 'Lay Me Down' was on. These lyrics really resonate:

I believe in the holy shores of uncreated light
I believe there is a power in the blood
and all of the death there ever was
If you set it next to life
I believe it would barely fill a cup
'Cause I believe there's power in the blood

Read Revelation 21-22 if you haven't done so in a while. The hope through Jesus for this life and the one to come is what all hearts long for!

Sunday, December 12, 2010

JoJo

Ansley coloring with JoJo, one of her granddaddies!

more than enough

From Amy:

We are in the "when" times of life.

Isaiah says," WHEN you pass through the waters, I will be with you....WHEN you walk through the fire, you shall not be burned.... "
yes, this is definitely the "WHEN". and if i am honest it hurts.

BUT, hurt is different than abandoned. OUR FAMILY IS NOT ABANDONED! WE HAVE A GRACIOUS GOD WHO COMFORTS US THROUGH OUR HURT.

Today is a new day. It is the first day I have been able to read Scripture without getting angry. It is the first day I have been able to say we are not abandoned. Yes, it hurts, in a way I have never known, but we are not burned.

Ansley went to the potty twice this morning! She also sat on the couch and colored. Right now, I am watching her sleep peacefully while she receives a blood transfusion.

Blood transfusion.

It shouldn't be this way. It wasn't intended to be this way. And yet, it is right now.

I am listening to Chris Tomlin's song, "More Than Enough." I want this to be the cry of my heart. Knowing and feeling aren't always the same. I am somewhere in the middle of those 2 things right now.

Sleep well my precious girl. I will be right here when you wake. Your mommy loves you.

early Christmas present---why not?



Using her new camera. We let her open an early Christmas gift! She wants to go out and take pictures after her nap! Yeah!!!

who knew this could be fun?

Ansley having fun with her oxygen mask today!

polka dot tights


Big morning! Got out of bed twice and sat on the couch and colored for a while. Ate 3 strips of bacon - and she wanted her new polka dot tights! Her chest tube still hurts her a lot.
Pray that it could come out soon.

light and life to all He brings

Hail the heav'n born Prince of Peace!
Hail the Sun of righteousness!
Light and life to all He brings,
Ris'n with healing in His wings

Mild He lays His glory by,
Born that man no more may die
Born to raise the sons of earth
Born to give them second birth
Hark! The herald angels sing,
"Glory to the newborn King!"

Singing with new meaning this morning as we worship the newborn King.

Particularly meaningful to Matt:
Joy to the World takes on so much more meaning, particularly - no more let sins and sorrows grow... Oh, how we wait for His healing and return! Marantha!

Saturday, December 11, 2010

learning that this is our story

Well, it is the end of the first 24 hours of chemo.

Ansley had a great day and a hard day.

It was the first time that she has gotten out of bed in 4 days. At home we often wished that she would sleep later and now we badly want her to have the energy to get up and walk. At home she would change her clothes 20 times a day and we were upset, today she wanted to put on "her clothes, not that hospital gown" and we were thrilled!

The ups and downs are rapid - glad to see her interactive, talkative, and eating - then hurting that you are excited for her to just put on clothes... or to have us dress her. Sweaters are NOT supposed to have to go over port-a-caths for chemo. That is not how this world was created, and it is not how it will be when all is restored and redeemed (Col 1:15-21).

But for now - and for a long time to come - Amy and I have been learning that this is our story. This is the one that God has given to us. And quite honestly, we are thankful for it. It hurts very deeply, but we trust His great mercies, which are new every morning. Please keep praying for our little one and us. Thanks to everyone helping with our precious children. And, if you have children - let them climb in bed with you in the middle of the night, let them flourish as little ones changing their clothes 10 times a day (for girls) or not changing their underwear for several days (for boys!), hug them more than you have - and get out in the yard or on the floor and play with them. Be like Jesus and take them in your lap and just revel in their fun childishness - that is a daily wake-up call from our Lord! Again, thanks to all who are praying and serving us so well. We love you.

garrett is so brave!



This diagnosis has changed this family in so many ways. One thing that they have to be careful of now is germs, germs, and more germs. Flu shots are an absolute must for everyone in the house. Here is garrett, age 5, being the bravest boy in the world, taking it in stride like shots are no big deal. Coke and Dunkin' Donuts afterwards...chocolate cake, of course!

today and today only

sitting here watching a movie with Ansley now takes on new meaning in my heart.

Good day today.
she got up and went potty and sat on the couch for a while.

chemo went well last night.

realizing that it is important not to misuse my mind.

stay focused on truth, stay focused on today and today only, enjoy every moment, do not fear for God is with us.

trust and thankfulness, trust and thankfulness, trust and thankfulness.

amy

how can we help?

Dearest praying friends,
Your response has been overwhelming and we are so encouraged by you, the hands and feet of Christ. As we talk with Matt and Amy about the best way to help them right now, there are some things they wanted to pass on:
Food:
We are so blessed by everyone's response wanting to help. I know that lots of people have asked about bringing food. The oncologists made a few recommendations and we would love your help with this. They recommended that we cook our meals fresh and not eat lots of leftovers when Ansley is on chemo - which will be for the next year. It is really most important when her white blood cell counts are low, but that will be hard to predict, so we are going to be cautious the whole time. There are no food restrictions per se, just that things should be fresh cooked, thus reducing the chance of bacteria or fungus being on the food - things that a normal body can handle could lead to a very bad infection in Ansley.
Ideas for that:
~~ it would be a real blessing if meals could be something like the following: 1) veggies - frozen ones that can be steamed in the microwave, 2) casseroles that can be frozen and then cooked later, 3) no foods fully prepared and needing to be immediately eaten.
Food calendar to be set up when someone is at their home each night to receive the food. (coming soon, pinky promise!)
In the meantime: gift cards for Ansley's wonderful grandparents and extended family who live in the area, who are with the other four blessings most of the time. in this time of transition and visiting various family members and friends, gift cards to fast food places or other restaurants would be such a help.
Rides:
as the days go by and the plan for the next few weeks and months become clearer, there may be a need to help with driving the kids to and from school after the new year. I know many of you have asked about this. We will keep you posted when we know what the needs are specifically, and we will have a care calendar set up for this purpose.

Saturday Morning

It is Saturday morning. We had the best night that we have had for 10 days since all of Ansley's problems started. She received her first dose of chemo last night, along with a number of other medicines for fluid on her lungs. She is still resting comfortably at 9AM this morning - somewhat from the morphine drip, but that is okay with us! She woke up briefly and we asked if she'd like breakfast - "yes, pancakes and bacon," was her reply! It was the first time that I think I have heard her real voice in days - a voice not strained by pain and frustration! By the way, bacon and watermelon are her two favorite staple foods!

She is so precious, as are our other beautiful ones - we call them our arrows based on Ps 127. Children are a gift from the Lord, like arrows in the hand of a warrior. Pray that in the midst of this hurt and struggle God would help us to continue to sharpen and hone our little arrows.

Thanks to everyone for praying.

Friday, December 10, 2010

Diagnosis

Stage 3 Anaplastic Large Cell (T-cell) Lymphoma

From Matt:
To all,
Here is the latest with where things are. I will try to share all that we know without being too technical. Ansley has cancer. In particular, she has a Stage III lymphoma, which means that she has cancer above and below her diaphragm - in her chest and in her abdomen. The specific type is anaplastic large cell (T-cell) lymphoma. [Of note, don't google this. It is very different in adults than in kids and any research over about 3-4 years old is outdated.] The entire team here has been great from doctors to nurses to patient care techs - from the ER to ICU to OR to PET scanner to 7B! We are so thankful for everyone that God has placed in our path.
We came in at 2AM on Wed morning with Ansley having severe constipation/obstipation. At 4AM we first saw the left-sided pleural effusion, which is typically a bad deal, but can be for a variety of causes. Later that morning Ansley had a CT scan of her neck/chest/abdomen/pelvis that showed extensive disease in the lymph nodes. We were admitted and the work-up began. In 60 hours she had a CT scan, thoracentesis, surgical removal of lymph nodes, port placed (permanent catheter for chemo), chest tube placed, and a PET scan and we were given the diagnosis of anaplastic large cell lymphoma. Needless to say, we are spinning and drained. But, it is obvious how the Body of Christ has been praying, as Amy and I have had supernatural strength and patience in all of this.
We met with our oncologists tonight (Dr. J and Dr. K). They are both amazing. We have had many small meetings over the past 2 days, but they spent over an hour with us tonight going over things. Dr. K just happens to be a national leader in this particular type of non-Hodgkins lymphoma! They told us that there is about a 75% cure rate with this type of cancer. So, it should be highly responsive to chemo and the results may be very good. Amy and I are so excited about this news, but somewhat guarded. It is a long road to get there. Ansley was started tonight on chemo - another huge blessing - 60 hours from initial concern to beginning treatment! The chemo should quickly shrink the tumor size and relieve some of her symptoms. But, the total first course is 12 months. There is a 42-day 'induction' period where the tumor is really aggressively attacked with chemo. We will likely be in the hospital for another 7-10 days and then have some daily meds, some weekly meds, and weekly placements of chemo into the fluid around her spine.
Right now, Ansley is still requiring a good bit of morphine for her abdominal pain. The tumor is still compressing the intestines and keeping her from being able to poop or pass much gas.
We are tired, but thankful for all of the time and work that many people have put into our little girl. The entire system at this hospital has been amazing, and the number of people who have responded to love our family has been overwhelming. We thank everyone so much for loving our little Ansley so well.
We are clinging to Romans 8:32 and 12:1-2 right now. We can't make sense of this. There are no easy answers or platitudes. This will be a long journey. But, we have a loving Father who so loved the world that He gave us His only Son. And, if He did not spare His own Son, how will He not also with Him freely give us all things that are good for us? We are learning a lot about trusting what the 'all things' means. But, I can look at the brokenness in this world and look at the Cross and see the loving hands of our Father and the solid, loving courage of Jesus - and we can trust that He loves us. Also, Amy made the point tonight that our emotions are swinging from pole to pole, and that is okay and good, we think. But, we need to daily not renew our emotions, which really just come when they want. Rather, we need to daily renew our minds in the truth of the Gospel.
So, I think that Regan will put this up on a blogsite. Thanks to her for that - this makes this the first official blog for me and Amy.
This part is from Amy~~~~~~~~~~~~~~~~~~~~~~~~~~~
I never knew my heart could ache this much. But, it is and this is what God has allowed. And so, in confidence, we move forward trusting that God will remove the cancer from our precious daughter's body.
The hardest thing in all of this is watching Ansley hurt. Please pray that we can keep her belly pain under good control. I want so much to take from her this pain and the next 12 months of her life. Pray that Matt and I can be strong and confident around her and the other kids. We have lots of big decisions to make in the next couple of days but none as big as the one we made today to move forward aggressively with this chemo.If i am honest, I am having a hard time remembering how many times God has provided in amazing ways. Please be my strength right now, friends. I am so very weak and torn apart inside. Thanks for your outpouring of love over the past 2 days. Words can never explain how thankful we are for our friends and family. We are going to have to be so careful with Ansley for a while. I would appreciate it if y'all would not come to the hospital to visit. We need her body to be at its healthiest right now to fight this cancer. Even a runny nose or cough could affect her.
If you know of anyone that would like to hear our story as our story unfolds, please send them this way.
Our goal is to give Regan updates. I am beginning to see that some goals are important and some are just not that big of a deal. Our precious Ansley is priority and also remembering the 4 other blessings we've been given. Please be patient with us as we go through this.
Amy

Waiting

From Amy
Just some things on my mind....

Crazy that in a couple of days life can change so much. Yesterday was a hard day. Big surgery, lots of procedues done at one time (bone marrow, spinal tap, biopsy, port).

Right now in a PET scan. We know it's lymphoma just not one type yet.

Ansley is fiesty and I am thankful. She ate 3 popsicles yesterday and had a fit in the middle of the night because she couldnt have another. She had a hard night with discomfort. Her little body just hurts right now and seeing it hurts our heart more than we thought was ever possible.

Learning to take things moment by moment.

~~pray that we would not look too far into the future but focus on what needs to be done for today, just today.
~~pray that we could be strong for ansley. we dont want her to see us cry and breakdown right now but it is so hard.
~~pray that we would be able to say, "whatever my lot, thou has taught me to say, it is well with my soul."
~~pray for our other little ones. i think they are curious about what's going on and we have told them that she is sick and the doctors are figuring out what is causing her to be sick.

my faith is weak. i am in shock.

amy

Thursday, December 9, 2010

The Solid Rock

Day 2

A day filled with various procedures and lots of waiting.

By the end of the night, the diagnosis of lymphoma had been confirmed.

"My hope is built on nothing less,
than Jesus' blood and righteousness,
I dare not trust the sweet frame,
but wholly lean on Jesus' name.

On Christ the Solid Rock I stand
All other ground is sinking sand
All other ground is sinking sand."

Wednesday, December 8, 2010

This Journey Begins




Brave Little Ansley!





In that day it will be said to Jerusalem:
"Do not be afraid, O Zion;
Do not let your hands fall limp.

The Lord your God is in your midst,
A victorious warrior.

He will exult over you with joy,
He will renew you in His love,
He will rejoice over you with shouts of joy."