The 1040 Window

Aaron’s white count dropped to zero today.  He has really bad mucositis–so, bad he can’t eat and it hurts too much to talk.  We’re looking for a store to buy a Magic Bullet at as I write this.  The chemo is starting to kill off all of the cells in the lining of his digestive tract.  From what we’ve heard, it is a normal and inevitable side effect.  As soon as his white count returns, the mucositis should go away.  By the way, the weird audio seziures have stopped.  Praise God!  Aaron is still more sensitive to sounds than usual, though.  Not much else to report–thank God for quiet, boring days!

Thank you for continuing to pray for us!

Psalm 71:1-5   O Lord, I have come to you for protection;  don’t let me be disgraced.  Save me and rescue me, for you do what is right.  Turn your ear to listen to me, and set me free.  Be my rock of safety where I can always hide.  Give the order to save me, for you are my rock and my fortress…O Lord, you alone are my hope.  

Waiting around for the stem cells is a little spooky.    The radiation and the poisons have accomplished their task…they have permanently destroyed Aaron’s immune system: his wellspring of life, the fount of his blood, is a withered wasteland.  Without new stem cells, Aaron, looking and feeling much better than he has on many previous occasions, will certainly die.  In all the world, there is but a single small plastic pouch whose contents can offer him life. There is no backup, no fallback option, no second bag waiting in the wings should the first one fail. 
Finally, a little before 2 p.m., word arrives that the transplant is scheduled for 2:30. Aaron is given steroids and antihistamines to prepare. 
Around 3, Dr. Jay opens the birthday-party postered,  ballon decorated door of room 1034 and enters with a red-and-white,  6-pack sized hard-side igloo cooler with pivot top and incongruous orange “BIOHAZARD” label.  From the Biohazard 6-pack he extracts a half-pint sized pouch which looks for all the world like a shrunken unit of blood.  We don our party hats as day nurse Rick connects this most unassuming pouch to the Groshong catheter in Aaron’s jugular vein, opens the catheter valve, and assists the vital flow into Aaron’s veins with a hypodermic also connected in line. 20 minutes later, the pouch is empty.  The stem cells are flowing toward their new home.
 
The Blessing of the Cells
 
Be fruitful, and multiply, and replenish the marrow.
Restore that which is laid waste, and
Reclaim that which the enemy has usurped.
 
Bless, oh God, creator of all and giver of life, the many sacrifices and great efforts that have made this day possible. For these sacrifices and for these efforts we are filled with gratitude.
Surely goodness and mercy shall follow us all the days of our life, and we will dwell in the house of the Lord forever.

Since tomorrow is the transplant day (Day Zero), the call today Day -1!  Last night, we officially entered the really difficult stage.  Aaron is feeling the effects of the chemo and radiation.  He’s vomiting everything.  He has mucositis–mouth sores–because of the high dose chemo.  Thankfully, he can still swallow which means he can take his medications.  Praise God!  Aaron is very weakened and in a lot of pain.  Someone right across the hall died last night which adds to how hard this is!  Please, keep that family in prayer, too.

The doctors advise that we shouldn’t have any visitors so that we limit the amount of germs we come in contact with.  Any little germ could be life-threatening to Aaron and we don’t want that!  We’d rather be extra cautious.  We’ll let you know when visitors are OK again.  Thank God for technology because, even though we can’t have visits right now, we can keep in contact with emails, calls and comments that you post on the blog.  Thank you, thank you, thank you for your prayers.  And thank you very much for letting us know that you are praying.  We love you all!

So let us come boldly to the throne of our gracious God. There we will receive his mercy, and we will find grace to help us when we need it most.  Hebrews 4:16

The Easter Sunrise finery donned this morning by Jisook did not include a hat.  Blue rubber gloves and an ankle length matching blue smock covering her nurses garb were the only extra accoutrements protocol required as she hung Aaron’s Easter Morning bag of poison.  Fludarabine and Cyclophosphamide will finish the job begun by last week’s radiation.

Radiation damage depends on both dose and frequency.  Even a professional bull-riding octogenarian  and determined hypochondriac would be hard pressed to acquire 70,000 chest X-rays over a lifetime; all of which might not be as fatal as the occupation.  But for all that radiation having been sprayed through Aaron’s body last week, he is doing remarkably well. A very dry and slightly sore mouth barely dent a cheerful apparent well-being that belies the damage inside.  If last week’s radiation exposure came about by accident, the treatment might well be a stem cell transplant, which, happily, is on our agenda. (The first stem cell transplant [via bone marrow] was performed after a radiation accident in the early days of the nuclear business).

In addition to various drugs that counteract some of the unpleasant and dangerous side effects of the poisons, immunosurpressants Cyclosporine and Mycophenolic acid join Immunoglobulin to pave the way for the new stem cells expected on Wednesday.

Aaron finished his Total Body Irradiation today!  He is still feeling O.K.–Praise God!  There has been a little bit of a change in his chemotherapy plan.  Because he is receiving the stem cells from a cord, Dr. Paquette has decided to use a chemo drug called fludarabine instead of cytarabine.  He will also have his chemo infused over 3 days instead of 2 days.  He is still scheduled to have his “3rd birthday” on April 11th.  (They call the day you receive your stem cells DAY ZERO or your SECOND BIRTHDAY but because Aaron already has a second birthday [when he was saved], we are calling it his 3rd birthday!)

Christopher is feeling better but last night, Michaela got sick.  That’s OK: the sooner she gets sick, the sooner she gets well, the sooner they can come back!

A very special “THANK YOU!!!” to everyone who has made the long drive out here to donate platelets.  You all are amazing!

Sarah Tribble posted a comment on March 31st saying “I pray many times a day that this whole ordeal will be a lot more comfortable than you anticipate it to be.”  God answered her prayer in an amazing way!  We all expected Aaron to be miserable when his radiation began.  But, we finished radiation today and he is doing way better than we ever expected at this stage.  It’s been 4 great days–days that we had anticipated to be horrible. Four days is a long time, too!  So, thank you Sarah, for letting us know you were praying specifically for us in this way.  It is great to know what all of you are praying so that we can see all the amazing ways God is answering prayers!  Keep praying that he will be more comfortable than expected, that he will stay safe from germs, that his body will be protected with no scary complications from the treatment and that the new stem cells will engraft perfectly.  We are fully trusting God to give us all of these things!  Much love and thanks to all of you!!!

“My old self has been crucified with Christ.  It is no longer I who live, but Christ lives in me. So I live in this earthly body by trusting in the Son of God, who loved me and gave Himself for me.”     Galatians 2:20

Aaron completed his first 2 days of Total Body Irradiation today.  He has 2 more days of radiation, then 2 days of chemo and then a day or two of rest.  His stem cells are scheduled to be given on April 11th.  So far, Aaron is doing OK.  He has been well enough to watch TV, eat, work on his computer and display his usual witty character.  Praise God!!!  The only issue, so far, has been that he is having a very rare auditory effect from the brain lesion.  Aaron has been experiencing a strange replaying of sounds.  For example, he listened to a voice mail and put the phone away.  But, he kept hearing the voice mail replay in his head.  It is not like an echo because he can hear full sentences repeat and the problem constantly occurs (as opposed to a few words repeating at the end of a sentence).  Also, sound is modified in such a way that when he hears conversation, voices sound the same without any inflections.  Right now, he reports that he hears the HEPA filter going and a replay of the HEPA filter at the same time.  A neurologist came to see Aaron because of this.  He said that he reviewed Aaron’s case and recent auditory problems.  He confessed that he was skeptical at first because he had never seen or heard of a patient with these type of symptoms.  So, did some research.  He found only 10 reported cases of these “auditory seizures.”  All 10 of these patients had a lesion in the right temporal lobe, just as Aaron does.  Honestly, the neurologist seemed very excited and interested in what Aaron described.  He probably wants to write a paper.  :)  The neurologist said that it is treatable–they will just increase his anti-seizure medication.

We had to send the kids to my parents’ house because Christopher got a high fever on Monday.  Dr. Paquette did not like hearing that Aaron had been around Christopher all weekend–he started Tamiflu as a precaution.  In addition to praying for Aaron, please pray that the kids will both be well and able to come back down soon!

We welcome your calls and visits!  Thank you for all of your prayers…it really means a lot to us that you are interceding our heavenly Father on our behalf.  I know a lot of you have given us special Bible verses in the past.  I have written down most of them.  I’m typing them up, putting them on pretty paper and then hanging them on the wall.  So, if God shows you a neat verse, post it in the comments section or email us.  I’ll put it on the wall!  Much love to you all!

“We will come back to you…THE LORD WILL PROVIDE!”  Genesis 22:4,14

My first full body radiation is today so my stem cell transplant is officially starting!  If I said I’m not anxious, I’d be a liar.  If I said I’m not scared, I’d be a liar.

But, “Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.” (Philippians 4:6) and, “…perfect love drives out fear…” (1 John 4:18).

“…join me in my struggle by praying to God for me.” -Romans 15:30.  Thank you all, THANK YOU ALL, THANK YOU ALL for doing just that!!!

So without further ado, here we go…  actually I am starting right now!!!  As I write this, they are informing me that I have to stop typing to immediately go down to radiation.