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.

Chemo Next Week?

Shawn and I met with the doctor and transplant coordinator on Friday to sign the consent forms for treatment.  We went over in detail the medications he will be receiving as well as possible and probable side effects.  It was overwhelming and a little scary.  It was another reminder of how serious Nathan's condition is, and that the treatment is also high risk.

As long as the cord blood gets here, treatment will start on Tuesday.  If it is not here, then it will start the following Monday.  They do not want the transplant to be on a Friday, Saturday or Sunday.  He will have 8 days of chemotherapy (4 days each of 2 different drugs) along with many, many other medications to counter act or prevent the side effects.  He will also have medications to prevent graft vs. host disease, and preventative medications against infections while his body has no immune system.  Since his bone marrow will be wiped out, he will need transfusions of platelets and red blood cells (that is what your bone marrow creates).  One of the chemo drugs is oral and is administered through a feeding tube.

Please pray specifically for Nathan:
1.  To have minimal side effects from the chemotherapy
2.  To remain healthy during the transplant process, no sicknesses or infections
3.  The transplant to engraft quickly
4.  No graft vs. host disease (the transplant attacking his body)
5.  No long term side effects, or effects later in life

Still Waiting Patiently

Nathan is over 11 pounds now and doing good.  He loves bath time and had his first tummy time in the crib this week.  They have finished the baseline tests, and he had his first IVIG treatment this week.  He will have them weekly until the transplant, then bi-weekly afterwards.  Chemo treatment has been delayed.  We're still waiting on confirmatory tests on the cord blood and then it will be shipped from Germany.  We will probably not start chemo until the 20th.  Shawn and I will meet with the doctors tomorrow to sign the consent forms for the treatment.

We are being patient.  Patience is so important in this process.

Therefore, as God’s chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, gentleness and patience.

Colossians 3:12-13

As we face the medical issues, insurance, and financial aspects it's easy to get anxious.  It's not a battle you win once, but a daily reliance on the Lord.  Some days are better than others.  My battle is with anxiety.  (I love Phillipians 4:6)  We all have our battles, it can be fear, pride, anger or many other things.  And every day, sometimes multiple times in the day, I try to lift it up to God.  It was not meant for us to carry on our own, I must rely on his strength.  

Although we are in a challenging  situation with Nathan, I know God has put us here to grow in Him. . . as spouses, as parents, and as people.  I want to be obedient.  I need to respect my husband.  I am called to do certain things because I've been blessed to be a mother.  I must look to the word of God to still search how I can learn, grow and be obedient.  

In honesty, some days I feel numb, I don't feel close to the Lord.  There are days I don't feel like talking to people, even though it is what I need.  There are days I don't want to write on the blog.  It is part of my grieving process.  But I must try to be disciplined.  The true desire of my heart is to grow, and for this to be used for good.

And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

Romans 8:28

Again, thank you for your prayers.  Continue to pray for Nathan.  Pray for him to remain healthy, and protection during chemo.  Pray for our marriage, for Shawn and I to grow closer, and how we should discipline Isaac in this time.

Waiting for Chemo

They're doing baseline tests on Nathan before the chemo starts.  They're doing confirmatory tests on the cord blood to ensure it's a match and then they will ship it here from Germany.  Chemo will start on Monday the 18th, as they don't want the transplant to take place on a weekend.  He'll have 8 days of chemo, then a day of rest before the transplant.  The chemo will be a more intense kind (about twice the dose for a cancer treatment, but less overall than the entire course of treatment).  He will probably be pretty sick for 3-4 weeks, until the transplant engrafts.  Nathan is doing good, he is a trooper.


My wonderful husband took me out for a date night on Saturday.  It was great to spend time together.  

Surgery Milestone Accomplished!

What a day!  It was a little stressful, but God gave us more opportunities to show us how he answers prayers, and takes care of us.  


We had the surgery to place the broviac in Nathan today.  The surgery was supposed to be at 12:00 or 12:30.  Nathan could not eat for 4 hours before hand.  At 1:40, we were still waiting.  Although Nathan usually eats every 3 hours, he was restfully sleeping.  He finally got into surgery a little after 2, and slept the whole time.  Thank you God, that was a huge blessing to not have to console a screaming baby for 2 hours.  


Chemotherapy could start as early as Thursday or Friday.  The medicines will make him pretty sick for 3-4 weeks until the transplant engrafts.


I forgot to mention one other huge praise on the last posting.  The pictures on the blog of our family and of Nathan and Isaac were a huge unexpected blessing.  The hospital staff went out of their way to arrange for Nathan and Isaac to meet (special thanks to Sister Judy), and have a photographer come to the hospital room to take pictures.  The doctors approved the one time visit.  Words fail to express what an incredible experience it was for all of us to be together.  I am so grateful the Lord even cares about the little things.  I love taking pictures.  I had taken it as part of the situation that I would not get baby pictures of Nathan, or the big brother little brother pictures I'd  always envisioned.  I didn't even ask because, I didn't think it was possible.  But God blessed us beyond measure, what an incredible gift.


Jesus looked at them and said, “With man this is impossible, but with God all things are possible.”
Matthew 19:26


God keeps telling us to put our trust and hope in him.  He will supply strength and peace we need, at the perfect time when we need it.  We felt his peace today, and it was because of everyone's prayers.  Thank you for your prayers.


You will keep in perfect peace those whose minds are steadfast, because they trust in you.
Isaiah 26:3


My prayer is that all of you will trust in the lord will all of your heart and mind, and feel his awesome peace.  God is good, all glory to him!

Donor and Details

God continues to challenge us to focus on him , and rely on him for all of our needs.  Our God is faithful, and continues to answer many prayers.  

Things are moving very quickly now that they have a donor match.  The cord blood is coming from Germany and is a 5 out of 6 match.  He will have the surgery to place the broviac in on Tuesday or Wednesday.  The chemo could start as early as next week.  They found a certain type of cells, Natural Killer (NK cells), are present and functioning, so he will need more chemo than originally thought.  The point of the chemo is to literally wipe out his bone marrow, so the new immune system can graft.  There is a fine line, they want enough chemo to eliminate certain cells, but not harm any other organs.  He is very vulnerable in this time as he has no immune system.  There will be 8-10 days of chemo, followed by a day of rest.  Then they will do the transplant, which is an IV that takes 30 minutes.  From there it should take 30 days to engraft.  There are phases of engraftment, we should be released from the hospital at day 100 after the transplant, provided there are no complications.  We will stay at my parent's house to complete the follow on out patient treatments for an additional 3 to 6 months.  We are still working out details.

Answered prayers:

Insurance issues are partially resolved, at least we wont have to change hospitals.  Still negotiating how much we will have to pay.

Isaac is doing great, he has transitioned really well.

My family has been helping out a lot.

The staff at the hospital has been amazing!!!  This has been an incredible blessing.

Prayer requests:

Pray for Shawn and I to rely on God, and for God's strength

Pray for Nathan 

    1.  To not get too ill from the chemo  

    2.  To protect the other parts of his body from the chemo  

    3.  That he remain healthy, no infections  

    4.  For the transplant to engraft quickly  

    5.  For his body to not reject the transplant

Pray for God to be glorified

Pray for our focus to be on Him, and to not get distracted

Pray to protect Isaac during this time as well, and his spirit be protected