Day -2

This is our last day of chemo!  He has done such a good job.

He has 4 IV lines, 2 into each broviac line, many oral medications, and 3 mouth washes 4 times a day.  He also gets an EKG each morning while on chemo.  That has been a challenge.  There are twelve leads they have to attach to his chest.  By the time they attach one, he's kicked of two more.  It took us over an hour yesterday.  At first he was sleepy, but he is getting more and more fussy.  He probably doesn't feel well.  It breaks my heart, I wish I knew how he felt, what to do, and that I could take it away from him.  Transplant is on Thursday, another step closer in our journey.

Shawn stayed over night in the hospital with Nathan on Saturday, and I went home with Isaac.  It was good for both of us.  Our friends were in town, and the boys had a blast.  We went to a park with fountains that come out of the ground to run in, then a huge one you can swim in.   I go home for dinner on Monday, Wednesday and Friday.  Last night when I was picked up Isaac sang the ABC song and Twinkle, Twinkle, Little Star to me . . . it was so cute!

Two Sons, Two Worlds: Day -7

Day -7
Another day of chemo is done, one step closer in this journey.  Nathan is still doing great.  The anti-seizure medication may be making him tired so he slept a lot today.  Then I got to enjoy my sweet boy tonight as he was awake from 5 to 11.  His little personality was back with all of his grunts, cute coos, and looking all around.


As precious as those moments were, my heart was torn.  Much of the time recently, I feel numb to most things.  But today, my heart aches for all of the moments I am missing with Isaac.  I love the way he says "tute" for cute.  He started singing songs, I love to hear his sweet voice.  He loves itsy bitsy spider and twinkle twinkle little star.  He has new routines, and I am not a part of them. Two sons, two worlds, one family.


I tried to look to the word, for He has to be my comforter.  God put it on my heart that if my pain is so great being separated from Isaac . . . it pales in comparison to the pain our father feels when his children are eternally separated from him.   His love for us is so much more than we could ever imagine.  His sacrifice was so much greater.  My sacrifice, this trial, is only for a season.



May your unfailing love be my comfort, according to your promise to your servant.
Psalm 119:76


God answered another prayer today, and I am thankful.  I had to really change my perspective and be thankful for the lords blessings.  This is the day the Lord has made, I choose to rejoice and be glad in it.  Our God is good.

Day -8

Little Nathan is doing great so far.  He is a trooper.  He has had 6 doses of chemo.  The first medicine he is getting every 6 hours for 4 days.  He will get the 2nd medicine once a day for 4 days.  The nurses say the 2nd medicine effects kids more.  So far he is just tired.  He is getting a blood transfusion, his levels are low due to the chemo.  Hopefully that will help him have more energy.


He has started smiling which is really sweet, I love his dimples.  He loves to look around, and even started batting at toys.  His personal fave was watching Animal Planet.  I guess the pythons and iguanas were fascinating. He would get upset if we turned him where he couldn't see the TV.  He's a big boy, already growing out of his 3 months clothes.


Isaac continues to amaze me.  He is so smart, he said a 7 word sentence yesterday.  Overall, he's transitioning well, he does need a lot of reassurance.  We have to tell him everything that's going to happen, many times.  He asks to hold baby Nathan again often.  He is obsessed with seatbelts, he screams to make sure everyone has theirs on.   Like any 2 year old, is beginning to love the word NO.


God is good, and he continues to supply the peace and strength we need.  Thank you for your prayers, God continues to answer them.

The righteous cry out, and the LORD hears them; he delivers them from all their troubles.

Psalm 34:17

Next step in the journey . . . Day -9 toTransplant

Day -9 to transplant

It was a busy day yesterday and an emotional night.  The prep work for the chemo made for a busy day yesterday.  Anti-seizure medications were started to counteract one of the side effects of the chemo.  There were lots of medicines, Dr. visits, and another dose of IVIG.

A feeding tube was inserted for the oral chemo, which was emotionally hard.  He kept gagging, and wouldn't eat.  It turned out we will have to use the IV form of the chemo drug.  Our doctor is confident this does not pose any additional risks.  They wanted to leave the feeding tube in, but he was so upset.    After several emotional hours, I asked them to take it out.  He has been taking the medications orally without throwing up so far.  The journey starting tomorrow, knowing what his little body would have to go through, along with all of the unknowns was hard.  Its so hard knowing we cant protect him from everything to come.  There were tears.  Thanks to the nurses, doctors and staff which are an incredible support.

We finally got to sleep after 1 am.  The first chemo dose was at 5 am this morning.  So we have now began the next step of our journey . . .  Please pray for Nathan to have little side effects from the chemo and to stay infection free.

Chemo Starting Tuesday

After many delays and we will be starting Chemotherapy on Tuesday.  The cord blood is due to arrive from Germany this afternoon.  We were supposed to start on Monday, due to a limited supply of the chemotherapy drug in the oral form it has been delayed to Tuesday.  Pray they can find more of the oral medication, rather than having to give it by IV.  


Honestly, it is very scary for us.  This is a high risk treatment, and there are so many unknowns.  But to our incredible God, nothing is a mystery.  He has continued to be faithful and has answered many prayers.   

Two scriptures God laid on my heart when we learned he was diagnosed:

Find rest, O my soul, in God alone; my hope comes from Him.  He alone is my rock and my salvation; He is my fortress, I will not be shaken.  My salvation and my honor depend on God; he is my mighty rock, my refuge.  Trust in Him at all times, O people; pour out your hearts to him, for God is our refuge.
Psalm 62:5-8

I will lift up my eyes to the hills— 
   where does my help come from? 
My help comes from the LORD, 
   the Maker of heaven and earth
                         Psalm 121:1-2

He is our helper, it is a comfort to know that we do not need to have the strength to get through this.  He will supply everything we need. 

There will be eight days of chemo, a day of rest, and then the transplant.  He will probably start to get sick 4 or 5 days into treatment.  The worst part will probably be for a little over a week, and then get gradually get better as the transplant engrafts.  He will be sick for 3 or 4 weeks.  Since they are wiping out his bone marrow, and his immune system, it is a very risky time.  He will be very vulnerable, any illnesses would be very bad.

Thank you everyone for your prayers so far.  We have many prayer requests this week for our family.

1.  Pray for Nathan to have little side effects from the chemo, to stay infection free, and for the transplant to engraft quickly.

2.  Pray for our marriage and that this opportunity draw us closer together.  Pray for the Lord to make Shawn and I a support to one another, and have grace and compassion for each other in this challenging time.

3.  Pray for Isaac to be protected in this time, and for Shawn and I to have wisdom and discernment in disciplining him.

4.  Pray for us to have peace and patience.

Chemo on Monday

Latest word is still that chemotherapy will start on Monday.  The cord blood is supposed to get here from Germany on Saturday.  Nathan is 11 pounds, 15 ounces!  Please pray for him to not get too sick from the chemo, to keep eating.  Also pray for him to stay infection free, and the the transplant to engraft quickly.

Start Date

Little Nathan is not so little, he weighs 11 pounds, 5 oz today!  He is so strong and can lift his head up and look around.  He still loves being swaddled, and loves to be held . . . a lot.  The nurses love to hold him too.  I call him my gruntasaurus.  He makes lots of funny grunts and noises.  When he is unhappy, he gives me a warning squall before he starts crying.

The doctors are great, and are very concerned about work and family aspects.  They agreed to let Isaac stand at the entrance to the bone marrow unit so he can see Nathan through the window.  Isaac saw Nathan yesterday, and was very happy!

He is getting his next IVIG treatment today.  Chemotherapy will really start a week from today.  Hopefully, that is the final answer.