The 1040 Window

Today’s blood test revealed that Aaron’s new stem cells are continuing to make more white blood cells. Baby steps on the cellular level! Cord stem cells are usually slower to engraft than adult stem cells because of the smaller quantity used, but our blessed batch is about five days ahead of schedule. Oh, yes! So far, Aaron is being a very good host, but does feel like his body is working overtime. He is very exhausted, bone tired, but he could have an immune system in another week or so. Praise God!

This weekend was nicely uneventful. Aaron continues to receive blood products (thank-you, donors!) His coloring looks better to me, and he has been walking up and down the hall at least once a day. His sister, Annalyse, stayed over night for the first time and had beginner’s luck: It was a vomit-free night!

We continue to encourage those first stem cells, “Make yourself at Home!”

What we have prayed for has happened.  ENGRAFTMENT HAS BEGUN.  The doctors came in this morning announcing that Aaron has 100 neutrophils.  That means he is starting to make his own white blood cells using the new stem cells he received.  Please, continue to pray that the engraftment is completed without complications, such as graft versus host disease.  GVHD can be mild to severe and can first appear within hours of transplant to several months later.  Please, pray that any GVHD that Aaron experiences will not be significant. Let’s praise God a super bunch!

Then God said, “I am El-Shaddai—‘God Almighty.’   Genesis 35:11

Early this morning (1 a.m. Thursday), Aaron got a severe, crushing headache that concerned the doctor enough that she sent us to the basement for an ultrasound of his head.  We got back into the room at 2 a.m. and after waiting up for 2 hours for the results, we finally went to sleep without hearing anything. We did hear later, that the ultrasound was fine.  Praise God!  Praise God!  Praise God!  They also did a couple of extra tests that show Aaron isn’t having graft versus host disease.  Praise God, again!  The rest of Aaron’s day was quiet.  He received platelets.  No fevers but still occasionally vomiting.  He reports feeling worn and he looks that way too. That God wants us to call on Him and rely on Him for everything we need (even semi-incoherently in the middle of the night) is amazing to me.  I am so glad He never tires of hearing me call on Him because I realize my profound daily need for Him.

Who is like the LORD our God?  Psalm 113:5

    After comparing chest scans from the past week, the a.m. doctor announced that Aaron’s lung infection was greatly improved, which was surprising because we didn’t know he had a lung infection until that moment. I think they suspected an infection but couldn’t confirm it until they saw the last scan and how much clearer the lungs looked. So praise God, He healed the lungs before I had time to work up a good worry!

   Also, the rash Aaron has is not typical of the classic Graft vs. Host Disease, so that is good news. And, he has been swallowing with less pain which makes taking his 15-20 pills a day easier. 

   We have settled into a routine and a general calmness prevails; I credit your prayers. God Bless You!   

Today was a little better day than yesterday.  After several days of having a fever, the source has not been discovered.  That means the blood cultures have had enough time to grow any bacteria, fungus, etc. that may be causing an infection. All cultures have come back negative.  The CT scan of his lungs also showed no sign of infection–Praise God!  Because of all the vomiting, pain and fever that he has endured the last few days, Aaron is pretty weakened.  He has not held down any juice or ensure for the last few days so, they started him on IV nutrition tonight.  Hopefully, this will help strengthen him.  He received platelets this morning and is receiving red blood tonight. 

Today was really neat because we saw 2 of our ICU heroes!  This morning, we got to see Dr. Gina Lee who was Aaron’s doctor when he was first admitted to the ICU.  She was always honest, helpful, thoughtful and brillant in caring for Aaron.  We are so blessed to have had so many wonderful doctors!  Dr. Lee reminded me of how the attending physician did not hold much hope in Aaron’s survival back in June.  She called Aaron a miracle patient.  I’m so glad she recognizes the mighty miracle that God has done on our behalf already.  Maybe you will remember, back in June that Aaron had a tremendous experience with coughing incessantly for 4 hours ( http://aaronboydston.com/2006/06/09/its-praise-god-time-again/).  God sent a respiratory therapist, Mihai, to stop the exhausting ordeal.  Today, Mihai brought Aaron a breathing treatment that helped Aaron have a little less difficulty with breathing.  It was tremendous seeing 2 huge figures from Aaron’s ICU days that we have not seen in several months.  Through their presence here today, we have been reminded of what God has done already for us and we are excited about what we have yet to see Him do!   Much love to you all!

Who can list the glorious miracles of the Lord? Who can ever praise Him enough?  Psalm 106:2

   If Ken, Natalie, or Aaron is too tired, too busy, or too stressed to blog, it becomes my turn. This is Aaron’s new Blog Rule. Of course, this means you read what I think is happening, not necessarily what’s actually happening. Plus, I never report anything I can’t spell ( :

  Aaron continues with a mild fever and chills. His docs suspect a small infection, maybe in the lungs. Aaron is still at zero white blood cells so all infections, minor or major, are a concern. It could even be his body’s reaction to his antibiotics, which is really weird. He feels generally bad, but not acutely in pain anywhere in particular. Doctor Paquette is happy with his progress.

  A few of you have asked the significance of 100 days. This is part of the Transplant Protocol: Aaron must stay first in the hospital, then near the hospital for the hundred days following his stem cell transplant. That’s the plan, so here we are. God bless you, and thanks for your steadfast prayers.

Aaron has been bouncing between having an “official fever” and just on the verge of it for a few days now.  The mucositis in his mouth is much better but it is much worse in the esophagus.  Thankfully, he has been able to drink Ensure and blended soups and has not been put on TPN (IV nutrition).  He has been vomity, weak and just plain yucky lately.  He hardly talks but has been up to playing World of Warcraft a little bit today.  He has been receiving a lot of blood products.  Yesterday, it was 2 red bloods and a platelet.  Today, it has been 1 platelet.  Thank you to all who drive down to donate–he has been receiving his directed donors this time! 

We’ve asked God to let this go better than expected and I always am amazed when I consider how He has done just that so far.  When we talk to other family members of those who have had stem cell transplants (there are at least 5 families on the floor), we hear how hard of a time these other patients are having.  Today, a lady told me of her husband who had a transplant the day after Aaron.  He has had kidney, liver, and lung trouble.  He swallowed his tongue yesterday, whatever that means.  Please, remember these other patients/family members that we are meeting when you pray.  We do our best to point them to Christ! 

We miss you and love hearing from you.  We are going to try to update the blog daily from now on–sometimes there isn’t a lot new though since we are just waiting for engraftment.  Thank you for your fervent prayers!

My eyes are always on the LORD.  Psalm 25:15

I am feeling pretty crummy today and have had an almost-fever (just .1 degree less than an official fever) for two days now.  I have been feeling really cold, very achy, run down, and super tired.  My mouth and throat feel quite a bit better, though!  Today I have taken sips of juice where I actually take more than one gulp at a time compared to taking a long time with the juice sitting in my mouth trying to get the swallow to happen.  Needless to say, pills have been very hard and painful to take.  But it’s getting better!

Overall, we are continuing to enjoy the theme of, “it could be a lot worse.”

Natalie and I had the most incredibly wonderful experience yesterday!!!  God blessed us in an amazing way.  Unfortunately, that is all I am going to share with you!  Sorry.  :-)  I just wanted you all to be able to rejoice and Praise Him with us for what he did and revealed to us.

I love you all, thank you so much, and God bless you ever so richly!

Aaron is so awesome!  I can’t believe how much he puts up with.  I’m immensely proud of him!  He continues to be in a lot of pain from the mucositis.  Last night, he threw up which could not have made his throat feel any better.  His white blood count is completely zero.  A couple of days ago, he got a unit of red blood and a unit of platelets.  The platelets were from a directed donor!  Thank you, thank you to all of you who donate platelets.  He ended up getting a fever that day, probably from the red blood unit he received–we notice that he has a reaction everytime he receives a unit of red blood.  For instance, Aaron got a unit of red blood today.  Around 2 o’clock, which was a little while after the blood had finished being infused, he started having trouble breathing and was wheezing.  We called for the doctor to come in.  They put him on oxygen for a couple hours, took an EKG and a chest X-ray.  By 4 o’clock, he was a lot better.  We think that he had a reaction to the red blood cells. Next time, we are going to see if they will give him benadryl ahead of time to help prevent this type of a thing.  We also found out today that two tests they did on Aaron came back positive for the bacteria c-diff.  There are a lot worse things he could have–praise God that this is something they can give him medicine for!

Because of our experience with Aaron being in ICU for respiratory failure, one of the things I have a hard time not getting scared about is breathing trouble.  As soon as I see his O2 saturation go below 90, I always start to panic.  We put Bible verses up all over Aaron’s room–it is quite colorful.  We get a lot of comments!  One of the reasons I have the verses on the wall is for times like today.  As soon as I moved past being concerned about Aaron’s breathing to being afraid, I went around the room “praying” the verses.  Thank God for His word!  I am so thankful that He has given us what we need for times of trouble in the Bible.  I glorify God for hearing my cries and responding with mercy and faithfulness.  You just have to read Psalm 91–that is what I prayed and that is what I received!  Thank you, God!

Psalm 91:  Those who live in the shelter of the Most High will find rest in the shadow of the Almighty.  This I declare about the Lord:  He alone is my refuge, my place of safety; He is my God, and I trust him.  For he will rescue you from every trap and protect you from deadly disease.  He will cover you with his feathers. He will shelter you with his wings.  His faithful promises are your armor and protection.  Do not be afraid of the terrors of the night, nor the arrow that flies in the day.  Do not dread the disease that stalks in darkness, nor the disaster that strikes at midday.  Though a thousand fall at your side, though ten thousand are dying around you, these evils will not touch you.  For he will order his angels to protect you wherever you go.  The Lord says, “I will rescue those who love me.  I will protect those who trust in my name.
When they call on me, I will answer;  I will be with them in trouble.  I will rescue and honor them.  I will reward them with a long life and give them my salvation.”