Forever Changed

Merry Christmas.   I hope everyone had a blessed holiday.  It has been a busy week.  We traveled to St. Louis for Christmas to be with my family.   We all enjoyed spending time with them.  I miss them so much.  My boys love their Grandma and Papa, Aunts, Uncles and cousins.  Another thing I love about St. Louis (besides the Cardinals), I got my White Castles.

Nathan is still pretty congested, but at least he isn't throwing up as much.  I did not feel well at all over the holiday, but I am starting to feel better.  We are finally back home.  Nathan has been so cute to watch.  He tries to jump, but he can't get off the ground.  He sways back and forth whenever he hears music.  He actually said "Night Night".

My little Isaac turned four.  He is getting so big.  He is amazing on the computer.  He talks like he is a lot older.  He is so smart for his age.  I know everyone says that about their kid, but he has had to grow up really fast.  He told Grandma yesterday, "Nathan does not eat.  He has to be fed with a tube."  He will ask me, "Mommy, is it time for Nathan to get another bolus?"  A word he should never have to know.  My heart grieves for him.  He used to be mommy's little boy.  When Nathan was diagnosed he was ripped away from me, forever changing our relationship.  Overnight, his mommy wasn't there anymore.  I wasn't a part of the bedtime routine.  I missed reading him books, and going on walks.  I missed the new words, new adventures and being a part of his life.  The months spent in and out of the hospital did not help.  I was away from my precious boy for ten months.  He would ask, "Mommy, when are we going to be a family again?"

In the weeks leading up to Nathan being born, I just knew.   Shawn and I did so many special things with Isaac.  I relished every moment.  We took him on nature walks, the swimming pool, feeding the bison.  I knew everything was about to change.  I would have no idea how much.  I knew it would hurt, but I don't think anything can prepare you for it to hurt this bad. 

I am home now, but it is not the same.  When Nathan got home, Shawn wasn't as comfortable with Nathan's routine.  It was a lot of work, and it was defaulted to me.  So even though I was there, Isaac's needs would be put on hold.

The little boy that could not leave his mother's side, my son that would cry if I left the room, doesn't want me in the room. He is mean to me.  He tells me to go away, he says he doesn't love me.  Oh, how my heart breaks.  All he wants is his Daddy, he cries if he has to be with me.  I know part of it is him growing up, but it's not all of it.  Another reminder of how Nathan's illness forever changed our lives.  Nathan may be getting better, but things will never be the way they were.

I am supposed to act like everything is okay.  The whole world goes on, but no one knows the struggles.  They say how good Nathan looks, but there is a constant fear that something else will happen.  The chemo can have delayed effects, and each new symptom scares us to death.  The effects this journey has had on Isaac, on me, on Shawn, and our marriage are real.  They are still there.  We are doing our best to heal, but I'd be lying if I said it was easy, or that it didn't hurt.
 
Please pray with me for my relationship with Isaac.  Pray for God to give me the wisdom on when to give him choices and when to be firm.  Pray for me to know how to love my son, and for him to love me back.  Pray for my broken heart.

The Lord knows my heart and I must not run from Him, but to Him. . . .  Lord, I know my hope comes from you.  You know my heart is hurting.  God give me wisdom.  Father, I need your peace.  I can not do this on my own.  I could not have gotten this far without you.  You have the power to make all things new, life comes from you.  The world was created by your spoken word.   Lord I humbly ask you to heal me grieve, help me heal, show me what I should do to be a Godly mother, and wife.  It is in You that I have hope.  You are my rock and I will not be shaken . . . .
 
Come to me, all you who are weary and burdened, and I will give you rest. 
Matthew 11:28

 Be joyful in hope, patient in affliction, faithful in prayer. 
Romans 12:12

Do Not Be Anxious

It has been a challenging week.  I really don't want to go into specifics other than there are a couple potentially significant challenges we are facing.  I am trying to trust the Lord and not be anxious.  I know the Lord will provide.  So just pray that the Lord will provide just as He has throughout the entire journey.  Even if it does not seem possible with our own resources, nothing is impossible with God.  This is one of my favorite scriptures that I have posted in my house.  Anxiety is something I often struggle with and this helps to guard my heart.

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:5-7

Nathan and I are still sick, which is why I haven't posted yet this week.

My little brave boy Isaac turns four tomorrow.  I am thankful for the richness he adds to our lives.  I love his giggles and energy.  He loves our nightly family dances to a Veggie Tales worship CD.  He loves to jump.  He loves glow sticks, reading books, slushees, and pigs in a blanket (pancakes with sausage) for breakfast.  I love that he still likes to snuggle.

Update on Nathan:
Tests show that although his liver function improved slightly, they are still high.  We are holding his infusions for now.  They ran some additional tests to see if he may have a virus since he has gotten sick several times. 

Yesterday at the ophthalmology appointment were all surprised to find out Nathan has fluid accumulating at the optic nerve as it enters his right eye.  Right now in the doctors terms, "it brings more questions than answers".  It potentially could be medicine related.  The Bone Marrow doctors are going to have further discussions with the ophthalmologist, and they are doing a thorough review of records to see if anything may have potentially caused this.  Right now his vision is fine, we don't know what the implications are at this point.
We just need to keep praying!

Plan Delay

Our family needs more prayers, especially Nathan and Isaac. 
Yesterday was a lot longer, and harder at the hospital than I had hoped for. The feeding clinic appointment went good, we made a plan to ween him off the feeding tube. In the bone marrow clinic they had to do a baseline blood test,  the blood draw was nothing short of traumatic. We did not have our regular nurse. The first nurse fished, and kept trying to reposition the needle while Nathan screamed. Two other nurses were holding him down. He looked up up me with the most heart wrenching look. I could not take away his pain. The second nurse stuck him twice, still no blood. They finally called a special vascular team, and it took a while for them to get there.

The hospital called with results. His liver and kidney levels which had been elevated, more than quadrupled from last week. High is not good, it means his kidney is not filtering like it should. We are hoping it is due to a cold / virus he has, he has not been feeling well.  The mucas makes him throw up a lot with his feeds, which could have also caused him to be dehydrated.  Bottom line, his kidney and liver function is too compromised for him to be weened right now. The plan is put on hold. I am disappointed and nervous and worried. Please pray for Nathan.

 

As for Isaac, it is a continual balance to meet both of their needs.  There are times Isaac's needs have to be put on hold for Nathan.  He seems to freak out when Nathan throws up.  It shows itself as acting out, but I think he's worried.  Plus we are intently focused on Nathan which doesn't help.  On the plus side we got to take Isaac to a special waterpark to celebrate an early birthday.  The doctors cleared Nathan to go into a public pool for the first time.  It was fun.  There are blessings among the trails.  We were thankful for the time to celebrate as a family.  I will post more pictures soon.

Thank you for all of your prayers.  We are praying God will bless all of your families this Christmas season. 

Hey, Hey It's A Monkey

Just a cute note.  So I turn my back for a split second in the kitchen, and I turn around Nathan climbed on top of the chair and was getting on top of the table!  I didn't even know he could do that.  He is fast!!!  He's always been my little monkey.

We had a great night as a family.  Nathan loves music and teeters back and forth to dance.  We had a family dance time to a Veggie Tales Worship CD.  We were all spinning and jumping together.  What a sweet moment.

Thank you everyone for your prayers. 

Transparency, An Internal Battle

Yesterday and today have been really tough emotionally.  I promised I'd be transparent.  There's an internal battle waging within me.

So many days I try to be encouraging, and some days, I just am weary.  I am discouraged.  Most people just can't understand our life and the stresses.   The constant manual syringe feeds, ensuring Nathan gets his hydration for his kidneys, creams for his skin, infusions, doctors visits, food logs.  The routine, the fears that your child will get sick again, or have another side effect from the chemo. Every cough puts you on edge. Keeping on top of the bills, battling the insurance company when stuff gets denied, working full time, somehow trying to keep the house clean (which usually is last on the list), trying to be a wife, trying to be a good mom, and cooking (which we end up eating out way more than I like).

Maybe part of the reason I'm having a hard time is on some level it was rejection. . .you let someone into your home, and life, and were judged. I know our lives are chaotic, I know that I am not always on top of things. With work, its hard to keep on top of the house. Emotionally some days are so hard.  There are a lot of things that I do not do well some days. . .iclude being a Mom.

I hate having to leave my boys. But when I'm here, sometimes I get so stressed I have to kind of zone out. People don't understand our life, but are quick to judge. At least that's how it feels. Things may be better than they were, but I can get so sleep deprived, so stressed beyond anything my body can comprehend, I don't feel anything. Inside I am still not the same. I know I am not always the best Mom. I feel like I am failing in so many areas. . .   Add it to the list.

I argue with myself. . . I should remain steadfast.  Look at how Paul praised God in the midst of his trials.  I am trying.  Just sometimes my heart hurts so bad, the pain so intense that everything else feels so far away.  I feel so alone.  But the Lord should be the one to fill my cup.  

Please do not think that I am not grateful.  The Lord is so good to have blessed us beyond what we deserve.  Just some days are hard.  It is a grieving process.  From the moment Nathan was diagnosed, nothing in our life will ever be the same.  My friendships are not the same, work is not the same, my marriage is not the same, my relationship with Isaac has changed forever.  People want to relate but its hard, I feel alone.

But in the midst of my pain the Lord is still there.  He hears me crying out to Him, my tears are not unnoticed by Him.   I don't debate on whether or not He's there.  I don't ask Him to take my burden away.  God's plan is perfect, this is His will for me.  But there have been days where the pain was too much to bear I asked for a new day.  Today I am trying to focus on the goodness  of the Lord and who I am in Him.  It's tough.  Focus on the truth:


The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.”
Deuteronomy 31:8

No one will be able to stand against you all the days of your life. As I was with Moses, so I will be with you; I will never leave you nor forsake you.
Joshua 1:5

Faithfulness

I am in awe of how the Lord provides.  At first I was beside myself upset that our nanny had quit with no notice on Thursday.  Grieving for the impact to my kids, and all the change they've already been through.  I was uncertain of the impact to our jobs.  But the Lord provided me with a peace that couldn't come from anywhere else.  He calmed my heart.  My faith is in the Lord, not in man.  I will not be shaken.

Cast your cares on the LORD and he will sustain you; he will never let the righteous be shaken.
Psalm 55:22 

Within hours, I had someone to step in and watch our children.  I came home yesterday from work, and she graciously offered to serve our family by watching our children.  But God wasn't done yet. . . she is going to watch our children until June!    I still am in amazement of how the Lord goes over and beyond what we can imagine.  It was such a grueling, hard search last time.  But this time, I was not anxious.  I put my faith in our God that never lets us down.

For I have always been mindful of your unfailing love and have lived in reliance on your faithfulness.  

Psalm 26:3

I do not hide your righteousness in my heart; I speak of your faithfulness and your saving help. I do not conceal your love and your faithfulness from the great assembly.

Psalm 40:10

Please pray for my Isaac. He can be aggressive with Nathan.  I do not know what is being almost 4, and what is because all we've been through.  Pray for his relationship with Nathan.  Pray for us to know how to balance both of their needs, and wisdom on how to nurture and discipline Isaac.

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. 

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

Glory in his holy name; let the hearts of those who seek the LORD rejoice.

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

  Rejoice in the Lord always. I will say it again: Rejoice! 

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!

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.

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

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. 

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.

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.

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.

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

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!

Bites and a spoon!!!!

I have sat down several times to write, and I did not have the words.  I was having a rough week last week.  I sat here and wondered why I was even writing, if anyone even cared.  You know self pity and all that stuff that comes with the lows.  Our schedule is so hectic, our lives still so much isolated, that it takes a toll.  I had not been feeling well, and it felt like one blow after another.

God has been good to encourage me.  I have tried hard to focus on the needs of others.  I have been working on being quick to forgive, and extending grace.  I am thankful for two very dear friends taking time to talk with me. 

We have a huge praise.  It may seem small, but it is big for us.  Yesterday we went out to eat (that's not the praise).  We went to a self serve frozen yogurt place for dessert.  Nathan was having a blast just running all over.  He came up to Shawn and started yelling and "asking" for a bite.  HE ATE OFF SHAWN'S SPOON. . . then mine, then Isaac's.  This is huge! 

He is just starting to put a spoon by his mouth. . . sometimes, and only if he is holding it.  Nathan will not let us feed him. 

Isaac was so excited and cheering for Nathan as he ate bites.  It was a doubly cute moment watching Isaac feed Nathan.

Tonight he actually ate 5 goldfish crackers and part of a Ritz cracker!

Thank you for your prayers.  Please continue to pray for Nathan to eat.

I will also share some fun fall pictures!!!