The 1040 Window

Nothing new to report, which is good. Aaron is well enough and out of pain enough to be frustrated by his constant exhaustion. He wants to organize his medical paperwork, but keeps falling asleep. Blue Cross isn’t known for their dramatic content.

At today’s appointment, Dr. Paquette said Aaron’s blood counts are still low, but he’s happy with his progress. Nevertheless, that means neutropenic precautions continue in full force. If you feel healthy and would like to visit, call ahead and we’ll let you know if he has an immune system that day (it goes up and down!)

Henry Blackaby: “God has always given His people assignments that are too big for them to handle alone, so that a watching world can see—not what we can do—but what God can do.”

Aaron is doing pretty well.  He has had no fevers since receiving medication for his shingles.  The shingles seem to be responding well to the medication.  He is starting to grow a little bit of hair.  He has babysat the kids a few times while I run to the store.  We went on a longish walk yesterday.  He has to be careful not to be in direct sunlight because that can activate graft versus host disease.  He has been shaky and jittery for some reason lately.  He is a little frustrated because he is trying to get some work done and can’t stay awake long enough to finish his task.  We had an exciting morning today.  We were awakened to the sound of the fire alarm.  Christopher was excited to see the four firetrucks come with firefighters in full gear.  They even sent their ladder up to the second floor.  Everything was OK.  It was only smoke from someone cooking–Praise God!  Mostly, we are just enjoying family time together.  After over a month of being separated, it is nice just to be in the same room together.  Aaron will have a blood draw tomorrow (Monday) and a doctor’s appointment on Wednesday.  We appreciate your prayers immensely.  God is awesome!

May the Lord lead your hearts into a full understanding and expression of the love of God and the patient endurance that comes from Christ.  2 Thessalonians 3:5

Dear Family and Friends,

Sorry communications have been scarce for several days. My lap top has been out of commission for the past week (Ken is working on it), and Natalie’s new role as home-nurse is very time consuming. Plus Aaron’s new mix of drugs have kept him too drowsy to blog.  

Aaron’s blood levels continue to hold. He has not needed blood products since his release. Praise God! The readings tend to be just on the lower edge of normal so everything is moving in the right direction.

 Monday’s appointment was very exciting. There were about seven doctors plus nurses all conversing about Aaron. This is his new out-of-hospital team headed by Doctor Paquette, plus his new study team. Aaron has agreed to be part of test group trying a new antiviral drug that’s easier on new stem cells. The study is being led by Doctor Winston (Remember him?) They all wanted to see a new rash on Aaron’s back. A spirited argument ensued. Aaron said it was like a Boydston/Burke dinner. The Shingles contingency won. To our relief, Aaron’s shingles aren’t causing the pain normally associated with that dreaded disease thanks to early detection and a miracle drug.  Can anyone tell me why the Zoster virus (dormant Chicken Pox virus) is called Shingles? Is it because the scab falls off like a shingle off the roof?   

Natalie has been keeping Aaron’s 40 pills on track, flushing his lines, taking his temperature, and even giving I.V. meds. I’m sooo glad Natalie is detail oriented. I wonder how other families cope with the transplant regiment.  We’re all hoping Aaron won’t have to stay the full 100 days here at UCLA. The Tiverton House is very lovely but not Ojai. We continue to thank God for an uneventful transplant as we hear the horror stories of other recent transplants.

I like today because Daddy is home.  It is awesome because I can see his face.  I was sad when Daddy was in the hospital.  I didn’t like it because I never got to see him.  I was so happy when he came home that I was jumping up and down.  Everybody knows that Daddy is the best daddy in the world.  I get to play with him and talk to him and show him things.  We watched Night at the Museum with him.  God is so great because He made Daddy better and He brought Daddy home.  There’s only one God and the only God made Daddy better.  Everyday, God heals somebody.  I’m glad Daddy is home so now I don’t have to miss him everyday!–Michaela

I love Daddy so much.  I play with him with my toys.  I want to play bowling ball on his Wii.   I missed him so much.   I can’t miss him so much anymore ‘cuz he’s not at the hospital anymore.  I’m going to shave my head so I look like Daddy.  And when he was in the hospital, I missed him so much.  And I give him a tissue.  And I love him.–Christopher

I got to the Tiverton (hotel right next to the hospital) Thursday evening; oh what a joy it is to be with my wife and kids again!!!  I got to surprise my kids, though Michaela said she suspected I was getting out of the hospital.  I can not even begin to express how great it is to be with them again.  My heart has been exploding with joy!
Unfortunately, I woke up yesterday with a mild fever.  Fevers are a very quick ticket right back into the hospital.  Thankfully, though, it was mild enough that the doctor was not too worried, so he instructed me to just keep an eye on it.  We were very happy for this, because the last thing we want to do is bounce in and out of the hospital.  Thankfully, I have not had a fever today!  But I have also had a few small blisters form around my waist that could be another ticket back into the hospital.  Sheesh!  We just need to remember that these “minor complications” are completely expected.  In fact, most of the literature describing what to expect after a transplant says to plan on going back into the hospital at least once.  That does not mean we have to, though!

I am not sure what the plan is from this point because the “plan” can vary so much and I am little clueless anyway.  We will have to stay down here, right next to the hospital for at least a few weeks because I am still under such intensive care and my health status can change in a flash for many, many reasons.  So the next several weeks just have to be taken day by day, week by week, but every day that passes is another day conquered and, right now, I definitely feel a wee bit stronger each day!

Praise His name and may He bless you all ever so richly in His marvelous grace!

One year ago, God chose us to serve Him in a new way. Aaron was diagnosed with leukemia and we were whisked away from our home to UCLA. God sent us to this different world, this mission field.

Today, we celebrate the goodness of the God we serve. Through this last year, God has demonstrated that He is Almighty, Healer, compassionate, Defender, always near, Creator, incomparable, Provider, Love, joy, life, our Shepherd, Truth, perfect, omniscient, unchangeable and unquestionably faithful. He is unequaled. Let’s Give glory to God for all the marvelous works that we have seen Him do through and for us! We especially thank God for the incredible love and support that we have received from all of you. For us, it truly has been a manifestation of Jesus’ peace that is beyond understanding. We could not have made it without you.

The decorations are down. The room has been cleaned out. Transport has been called. We have been discharged. We are on our way over to the Tiverton!

PRAISE GOD!

In His grace and with so much love,
Aaron and Natalie

“You will know that I AM the LORD; those who put their hope in Me will not be put to shame.” Isaiah 49:23

Good news! We were shocked and amazed this morning to hear that Aaron’s white blood cells made a mega-leap from a pitiful 1,300 count to a hefty 10,900 count (normal is between 3,000-9,000 count).

My first thought was They really prayed! And God answered!

My second thought was Is this okay? Does Aaron have a big infection, causing a sudden rise in the white blood cells?
My third thought was Wow! What a great Immune System if he does have an infection!
And finally Thank you, thank you, Lord!

Happy to report Aaron is feeling well, with no signs of infection. The docs are all smiles and ready to boot Aaron out. We may be going across the street tomorrow!

Blessed beyond measure.

Aaron hasn’t had a fever since yesterday morning.  Praise God!  They determined he has C.diff and are treating him accordingly.  We were surprised to learn, this morning, that Aaron is neutropinic again.  If you remember, they determine you have engrafted by when you are not neutropinic anymore.   Aaron officially engrafted on Day +24.  He should not have fallen back into neutropinic ranges.  The doctors said this morning that there are a few medicines Aaron is taking that could potentially be the cause.  We asked the attending physician how weird this was.  She replied that she is not happy about it but she did not seem overly concerned.  They will eliminate a drug that he takes every Saturday (Bactrim) to see if that helps and will also restart neupogen.  We haven’t heard anyone say anything about what this means in terms of engraftment yet.  Today’s date is May 15th.  It was May 17th of last year that Aaron was diagnosed with AML.

Just as you cannot understand the path of the wind or the mystery of a tiny baby growing in its mother’s womb, so you cannot understand the activity of God, who does all things.  Ecclesiastes 11:5

Personally, I try not to ask God for anything that I think is me trying to tell Him how to do His job (i.e., make Aaron’s white cells increase, make his rash go away, let him come home now).  I know that I don’t have the foggiest idea how God is working everything out for Aaron’s complete healing.  There are so many complicated and intricate steps, reactions and timings that only God can control to bring about Aaron’s restored health.  I’ve seen “bad” things turn out to be “good” things and “good” things turn out to be “not as good” as I thought.  But, in everything, I have seen God’s protective and powerful hand.  The invisible qualities of God that are evident in creation are also evident in everything we have gone through in the last year.  God’s eternal power and divine nature have been on display through Aaron’s sickness so that we are left without excuse for not knowing God better.  I have learned a tremendous amount about God in this last year and I hope you have, too!  So, as we are all feeling a little nervous down here with this morning’s changes, we invite you to rely on God with us for a spectacular resolution to this “problem.”  Just as we have trusted Him, relied on Him and petitioned Him for the last year regarding Aaron, lets continue to do so expecting to see Him do great things and praising Him for what He has done already.  We love you!

One lone fever at 4:00 AM has us concerned, but Aaron has been free of fevers since then. He tested positive for that C.Diff organism again so it’s back to gown, gloves, and masks for staff and visitors. Plus he’s back on the C.Diff specific-antibiotic, which I think is responsible for his nausea and vomiting returning today (at least one nurse agrees with me!)

The Team mentioned their desire for a head scan this morning to check for infection because Aaron sounded a bit congested, but nothing happened. Maybe the fever free afternoon has put that idea on hold.

As to when Aaron can go across the street; I heard anywhere from two days to two weeks. Makes it hard to plan your social calendar…

Pray that Aaron starts to eat more. He is thankful for the ability to swallow again without actually thinking about it, but has no appetite.

Hope everyone had a nice Mother’s Day.