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.