This is the day the Lord has made, we will rejoice and be glad in it.
Psalm 118:24

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Our Journey of Nathan's Transplant

Our Journey of Nathan's Transplant
We're Still Rejoicing!

Thursday, November 29, 2012

Another Challenge: He is Enough

This has been an incredibly humbling day.  The Lord continues to teach Shawn and I that we can only rest in Him and nothing else.  He is teaching us that the only person we can rely on is Him.  We can not put our faith or hope in anything but Him.

This morning He was preparing me for yet another trial in this journey.  Our nanny quit with no notice.  The contract stated 8 weeks notice was required because of how hard it is to find someone to care for Nathan's needs.  I have literally a half of a day of leave left.  Our jobs are put in jeopardy by the selfishness and dishonesty of one.  I am disheartened by the lack of integrity, and that one's word has no value.  Those are human reactions.  Those are human thoughts.  I must rely on the Lord.

To our amazing Father this was not a surprise.  There is nothing that can happen outside of His plan.  On the radio I was listening to a sermon this morning coming home from dropping Isaac off at preschool about Paul and the book of Romans.  Little did I know that it was exactly what I needed to hear for what was to come later in the day.  He talked about Paul's faith, and how we are going to have trials.  Even in the trails Paul ministered about the amazing depth of our Father's love, and nothing can separate us from his love.  God is there in every circumstance.  With Christ's strength, we can do ALL things.  And in every circumstance, God is enough.

So I am saying now, even though my heart is grieving for my children having to go through change yet again, God is enough.  Man will always fail us, but our heavenly Father never fails.  I will not put my hope in man, but in my God.  So even though I do not know what may lie ahead, I know God will provide.  I do not know what tomorrow brings, but I know who God says I am in Christ.  All else pales in comparison to the promise and hope that I have in the Lord.  Even though my heart is hurting, even though there are so many unknowns, my burden is light.  I have put my hope in Christ.

Please pray for our family as we struggle with another change and a lot of unknowns.  Pray for this to not have a negative effect on the boys.  Pray for God to provide someone to care for Nathan and Isaac's needs and to love my boys. 


Wednesday, November 28, 2012

We're Still Rejoicing

The Walker Family has been sick again.  So Nathan has been throwing up alot again. . . this equals lots of laundry.  Our feeding clinic appointment got moved up to December 12th!  We will probably begin the rapid weaning process over the holidays to try to get him to eat.  Please pray that he will start to swallow food.  Please pray for Nathan to eat.  This will be a rough process.  The rapid wean literally cuts off his food supply to "starve" him so he will eat.  Once he loses weight to a certain point, we will supplement with food again.  We will still give him hydration for his kidneys.  He will be one grumpy boy.

Thank you to those who have sent Isaac letters in the mail.  What a blessing it has been.  He prayed for letters.  God has used people to reveal Himself to my little boy.  I wish you could see the look on his face when he gets mail.  I have been able to teach him that God hears our prayers, and He answers them.  After we get each letter we pray to thank God for answering our prayer and for blessing us.  It may seem like a small thing, but it is so powerful of a real application of faith for Isaac.  For those wanting to send letters to bless my boys, please do!
1618 SE Boone Trail
Lee's Summit, MO
64063
What a blessing it is to our family.  Your precious gift will be put on our letter wall.


We were blessed with a gorgeous day, and incredible photographer, and a beautiful stable for these family pictures.  We're Still Rejoicing.  We are so blessed!








Shout for joy, you heavens; rejoice, you earth; burst into song, you mountains! For the LORD comforts his people and will have compassion on his afflicted ones.
Isaiah 49:13








1 Chronicles 16:10




There, in the presence of the LORD your God, you and your families shall eat and shall rejoice in everything you have put your hand to, because the LORD your God has blessed you.
Deutoronomy 12:7




Phillipians 4:4


We are praising God for His good works, for His faithfulness, and for the family he has blessed us with.  We are thankful he has given us the body of Christ.  Without your prayers and support, we could not have made it this far.  Our God is good!

Wednesday, November 21, 2012

Flashback: How Far We've come

Tonight I am thankful for how far we've come.
I read back on the blogs I posted last year, there was so much that I could not write at that time.  I am going to take you back to a moment a little more than a year ago.  It was Sunday, August 21, 2011.  Nathan was not breathing very well.  Fluid was accumulating in his lungs.  The oxygen alarm started even with him being on continuous oxygen.

The doctors had notified me that he had veno-occulsive disorder.  When we signed consent at transplant, they told us it was awful and hard to treat.  But they said his risk was low because he hadn't had chemo before. His liver was shutting down due to micro blood clots.  The body then goes into multi-organ failure and death if not treated.  He was turning yellow, even the whites of his eyes because his billirubin level continued to rise.  He continued to retain more and more fluid.  His belly was distended, his liver was so enlarged that it was like a cantaloupe sticking out of his side.  I couldn't hold him because he was in too much pain.  The mothers yearning is to comfort her child, but I couldn't he would scream in pain if he was held because his belly hurt too bad.

Our doctor came in the room that night.  I should've taken a clue that it was bad if the doctor was still here in the evening.  I could tell by her bed side manner that the news was not good.  She would not be as friendly, and was some what distant.  She explained to me that with Nathan's condition, there was a 50% mortality rate.  There was one medicine with a 50% chance of working.  They had taken other steps to reduce the stress on his liver.  They had done all they could do.  It was up to his body to see if it would heal.  I remember asking her, "Are you telling me there is a 50% chance he will die?"  She said yes.  I was alone with my son.  I prayed over him, just begging God to heal his body.  There was nothing else man could do.  I was left wondering what God's will was.

My reaction was to isolate myself from everyone.  Although, it really wasn't my choice anyway.  My parents asked if they could come up, I told them no.  I told my mother in law not to come in.  They had to be cleared 24 hours in advance to come in, I did not want to leave his bed side.  I was alone.  Alone with the continous sound of the oxygen alarm.    At that point in time most of my family had never even seen Nathan due to isolation in the bone marrow unit.  If he would have died, they never would have seen him alive.

I had an incredible nurse that night.  Karen had lost a child too, in fact his name was also Nathan.  Together that night she prayed with me.  She prayed with me to beg God for my son's life.

For some reason the emails I sent out, I downplayed the seriousness of his condition.  I called it "delicate", or "serious".  I do not know why . . .  I did not take pictures at the worst.  But in the days leading up to the worst, this is what he looked like.



I say all of this, first of all to share my story.  But I also say this because recounting this makes me so thankful for where we are today.  It makes me thankful for how far we have come.  I am thankful for my son's life.  God has been faithful to us.

Saturday, November 17, 2012

Delivered From the Fire

We have a huge praise.  This is a story of God's protection over our family.  This is a testimony that next time you are really irritated by a situation, God could be using it as protection.

Last night my Mom was in town.  When I got home from work she had been making dinner.  We left to run some errands.  Impromptu, we decided to go to the tree lighting ceremony in downtown Lee' Summit.  I called Shawn to meet us.  I then proceeded to call him 3 more times with items I had forgotten, so it took him alot longer to get everything together and get out of the house.  Right before he left, the dinner on the stove caught on fire.    He put the fire out.  The house filled with smoke.  Very stinky smoke, it was very over powering!  Praise God, he was still there.  Had I not called with all of the annoying things to bring, he wouldn't have even been there.

Last night and tonight it was a lot of cleaning to get the house "de-smoked".  I was talking to God and asking why things were hard. He spoke very clearly to me "I protected you.  Your house could be gone right now."  I didn't complain after that.  Our God was faithful to protect us.  After a lot of cleaning and laundry, our house is almost back to normal.  We are all safe, minus a pan.

Our God protected us, and we are very thankful.  He literally delivered us from the fire.  Thank you God!


But let all who take refuge in you be glad; let them ever sing for joy. Spread your protection over them, that those who love your name may rejoice in you.
Psalm 5:11

We're still rejoicing!
Love from a very thankful Walker Family

Tuesday, November 13, 2012

Another Bump in the Road

Yesterday was very challenging day at the hospital. Nathan’s blood work was not very good. His creatinine and liver enzymes were high. These are indicators of kidney and liver function (high is not good). There is a bump on the side on his neck, possibly an enlarged lymph node. So we have to go back to the hospital in a week to get his levels checked and observation for the lump on his neck.
 
He also went to therapy for feeding. As most of you know, Nathan still does not eat. He has a g tube that goes straight into his stomach. His nutrition comes solely from Pediasure. Over the past week several times he has showed interest in food, and put several things in his mouth. The therapist is recommending rapid weaning from his feeds (instead of a more gradual process). This will be a process of clinically monitored starvation. Our goal is to get his body to recognize the hunger and feeding cycle. The doctors and therapists are involved to closely monitor him. He needs to learn that he needs to eat food when he is hungry. His tongue and muscles in his mouth have strengthened enough that they believe he is ready. This is tricky due to his compromised kidney function.
 
Please pray for wisdom for the doctors, and for continued healing for Nathan. Please pray for Nathan to start eating. Pray for protection from some of the long term effects of the chemotherapy he received. Thank for for continuing to pray with us. God has answered many prayers already. He is faithful. 
 
Here are some pics from the hospital visit.  They both did so good considering we were there for so long.  It was our Doctor's last day, which makes us sad.  She loves Nathan very much and we love her. 














Sunday, November 11, 2012

Preparing for tomorrow

Prayers Needed. Tomorrow will be a hard day. Nathan's Doctor is leaving. It will be hard to say goodbye. She loves Nathan so much, and we love her.  I hate change, and I hate goodbyes.  I also do not like crying.   I also have to take both boys with me tomorrow to the hospital, Nathan has 2 different appointments. It is not uncommon to have discipline issues with Isaac after we leave because of me needing to talk to the Doctors and Nathan having so much attention.  Tomorrow night will also probably be challenging.

Today's sermon was really good.  We are studying fruits of the spirit.  This week focused on self control.  There was a lot of good points I would like to share.  Right now I am very tired.  I am thankful for the message and the conviction.  I believe the Lord revealed to me today the next area of my life that I need to submit.  It was an answer to prayer.  

Lord continue to change me heart. I want to love the things you love, hate the things you hate.  Please help me to glorify you through my words and actions.  Help me to love like you have shown us and how your word describes in 1 Corinthians.  Lord continue to cultivate in me.  Thank you for loving me though I do not deserve it.  Thank you for forgiveness.  Help me to forgive myself, and others quickly.  Lord, help me to be your instrument.  Help me to be the wife and Mom you want me to be.  In Jesus' name, Amen!

We had some cute moments with the kiddos today, I thought I would share.






My boys are strong and brave.  I love them very much.



Saturday, November 10, 2012

To God Be the Glory

What a great night.  Shawn and I got to have a date night.  It was hard to not feel guilty, but I almost forgot what it was like to have a grown up conversation.
God has been putting many things on my heart. 

I know that I must share Nathan's story so each and every prayer that is answered can be a testimony to His faithfulness.  If I don't share, then God can not be glorified.  Also this is a difficult journey, our journey is not over.  There are many prayer requests.  God hears our prayers!
When things were really hard, sometimes it is hard to post.  I will do my best to be transparent.  Our schedule is very hectic, and time restrictions often do not allow me to post.  Thank you for walking this journey with us.  Thank you for your prayers!

I completed an exercise for a friend this week in honor of their birthday.  I see birthdays as a celebration of the person, but also an opportunity to glorify God.  You are honoring the CREATION and the CREATOR.   I made a list of 50 passages of what the Bible says our identity is.  How does God see us?  We were created in his image, we have been set free . . . . and the list goes on.  It is hard to have a bad day and be down when you focus on how God see's us and what he has done for us.  I will try to include the list tomorrow.

It is also very convicting to look at your life and how you are glorifying God.  Its an opportunity to take away anything that does not glorify Him.  I am far from perfect, I am sinful just like everyone else.  But I want to continually try to be better.
This is one of my favorites from the list:

I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. 
Psalm 139:14

How great is our God that He can use us, despite our sin, to be instruments to accomplish His will.

Friday, November 9, 2012

Serve and Support

It has been very hectic this week.  I admit I'm a little frazzled.  Shawn's Grandpa passed away this week.  He went to Fort Scott while I stayed here with the boys.  Bedtime alone is hard with the two boys.  Two baths, Nathan's creams, tummy care, prepping his feeding bag, and tonight he had his infusion.  I was so thankful that our nanny Hailey came over to help.  What a blessing she has been in our lives.  That was such a huge answer to prayers.  Her passion for kids, her love for my kids is amazing.  She is a hard worker.  We are thankful God put her in our lives.

Nathan ate more bites!  Praise God!  I accidentally missed one of his feeds, but he was trying so many more foods!  I am excited for the feeding clinic in January.  I almost can't imagine what it will be like for him to actually eat again.

I was just trying to enjoy the noys smiles this week.  I love nathan's deep dimples and how he opens his mouth so wide when he laughs.  I love Isaac's silly jokes, and how he tells me he is "hilarious".  What sweet moments.  I am scared that I won't remember how they sound, what they look like.  I want to hold on to the momeries forever.

I have been frusterated this week regarding the lack of support for Nathan's condition.  We are treated on a hematology oncology (HEMOC) floor by HEMOC doctors, but we are like outsiders.  There are so many agencies that cater to kids with cancer and their families, but they will not offer services to us.  We were rejected this week by SuperSibs.  It is a n agency dedicated to help siblings. . .of kids with cancer.  Even though Nathan went through chemotherapy, even though Isaac had to be months without his mommy.  For some reason Isaac's journey is not worthy to receive their support.  I would like help in knowing what I can do for Isaac in this process.  I was hoping that it would be one place where the focus would be on Isaac, that it would be special for him.  I was hoping that it would be a  place so we could learn the effects this illness has had on Isaac and what we could do.  There have been many more rejections. . .

I love kids with cancer, we have many new special friends.  I love the kids spirit, their strength, their innocence yet how old they have grown too quickly, I love their joy.  I agree childhood cancer needs more funding.  Cancer is awful, so is any kid that has to have chemo, so is any kid that has to be in the hospital, so is any sibling that has to be without their mommy and daddy.  But what about families like mine?  Where do we get help?  Where do we get support?

Maybe someday God will allow me to serve and support families like mine.

Sunday, November 4, 2012

Request for Letters

Today was a great day, but I am very tired.  We are all doing well.  There is no change with Nathan.  We have two appointments at Childrens Mercy tomorrow.  Our doctor, whom we love, is leaving.  I am so sad!  We have an appointment with the feeding clinic.  There has not been much change with eating.  Yea, he still doesn't eat.  Sigh. . . . someday . . . .

We had a memorial for sweet Joella today.  At 2, little joella went to be with Jesus.  God blessed us with a beautiful day to honor her memory.  I pray that God will continue to provide her parents with everything they need on this journey.  Throughout Nathan's journey she has been on our minds and in our hearts.  Now when we go to Childrens Mercy for inpatient stays we are on the sam efloor she was on.  Ella Bella we love and miss you.

On a differnt note if anyone would like to send letter to Nathan or Isaac, they enjoy getting mail.  It would be a huge blessing.

Please send cards and letters to:
Isaac and Nathan Walker
1618 SE Boone Trail
Lee's Summit, MO 64063


Friday, November 2, 2012

Rough Road . . . Lesson Learned

It has been a challenging couple of days.
Halloween was a good lesson for me of trying to let go of expectations.  Anyone who knows me can testify that I like to make things special.  So I wanted to make worm jello, mummy hot dogs, and a special drink.  Long story short. . . Things ended up being very stressful despite my efforts to space things out.   I literally was asking God, what are you trying to teach me, why is this so hard?  Lesson learned!  I need to not set such high expectations.  I get this vision in my head and I want it to look a certain way.  I need to be flexible if things don't go the way I had planned.  It turned out okay, but the night had a rough start. We took the boys out trick or treating, and it ended up being fun.  Isaac didn't even want to wear his angry birds.  We had a Buzz Lightyear again, and a skeleton.  It was overall a good night.

Last night was especially rough.  It was time for Nathan's infusion.  It was awful.  He was in a lot of pain. I had to hold him down while he screamed. The medicine burns a lot going in. . . Normally the numbing cream lets him sleep while we do it. Lets just say things did not go as planned, it was our mistake. The cream was not on long enough.  Hindsight, we should have stopped at reapplied the cream. I was afraid of contaminating the needles because I don't have any extras. I should have stopped. He got so upset he threw up everywhere.  I was heartbroken, I cried with him.  I hated going into work today and leaving him.  Plus I only got about 4-1/2 hours of sleep.  TIRED MAMA.

We went to the store tonight.  While we were sitting down eating, Shawn was feeding Nathan her bolus.  A couple came over and started asking us about what was wrong with Nathan.  We started talking and they were an awesome Christian couple.  She is a nurse and he is a chaplain.  They prayed for Nathan and told us how he would bring people to Christ and be a testimony to God.  AMEN!  God used them to encourage us in a mighty way tongiht.  I am thankful they were bold to come up and talk to us.

This tired mommy will share pictures and thoughts later. . . right now, its off to bed.
So Thankful!