The 1040 Window

Thank you, God!  Last night, we found out we were to be suddenly discharged.  Within an hour, we were out of the hospital room.  This was a scary thing because, at the time of discharge, Aaron could not walk because of this mysterious pain he has been having for the last 2 weeks.  What was even more scary was that Aaron was having a flare-up of pain each night.  These flare-ups were horrible!  He would writhe in pain, moan, cry for hours until a doctor would OK enough IV pain medication to bring it under control.  Aaron was getting so much pain medication because of the tolerance to it that he has built up over the last nine months that several doctors said it would kill a normal person.  With Aaron going home, we would not have access to this IV medication which was the only thing that ever brought relief.  The thought of being at “home” when one of these flare-ups occurred was too much for Aaron to bear and he began sobbing upon hearing the news about discharge.  He told me he was afraid.  I said that what we were going to do was to trust God with this seeminlgly impossible situation.  After all, what He can do is so much better than any pain medicine that they could have given Aaron.  Sometimes, when there is a problem we have to deal with, it isn’t easy to remember to trust God first.  But, we remembered and we decided that we were going to do that.  We prayed together and then began calling as many people as we had time to call before packing up and leaving.  Many of you probably got a prayer chain call from someone! :) 

So, check out what happened.  It’s awesome.  Aaron was wheeled out to the shuttle that brought us over to the Tiverton.  He could not put any weight on his left leg at all.  The driver of the shuttle had to help Aaron get up and down the steps of the van.  I wheeled him to our room and he made it into the bathroom using a walker.  He decided to try to take a hot shower.  Bam! God answered our prayers.  The hot shower did something.  All of the sudden, Aaron could move his left leg up and down and put weight on it!  He immediately started walking around, too.  We thought the shower would have a short-term effect but it didn’t.  And, do you think Aaron had a flare-up of pain last night?  No, he didn’t!  God is so good.  For the first time in over a week, Aaron did not have to experience hours of excruciating pain throughout the course of a day.  He still is experiencing pain but it is controlled pain which makes a BIG difference.

Today, Aaron had an appointment with his primary care oncologist.  Dr. Paquette said it seems like what caused all of this back pain was an allergic reaction to the chemo that was shot up through his spine.  What it was exactly that happened will probably never be known.  Some suggested theories:  chemical meningitis, arachnoiditis, infection, inflammation that compressed a nerve.  Whatever it was, God is healing and we are thankful to be out of the hospital.  We are scheduled to go back to the doctor’s office in one week to get a (different type of) chemo sent up Aaron’s spine.  We will attempt to leave in the morning for Ojai.  We also got an update on the search for an adult stem cell match.  One of the two possible matches for Aaron did not match.  So, we have one person in the world that could possibly be a perfect match and several that would possibly be a slight mismatch.  No worries.  Jehovah-Jireh:  God will provide.  Mom Boydston is still gathering information on the upcoming stem cell drives.  She promises to post soon.

Thank you to all who continue to pray for us.  Thank you to those who specifically prayed about last night.  Thank you for sharing in our joy.  Thank you for glorifying God with us for all the miraculous things we have seen Him do.  One of our friends was visiting last night and reminded us that God loves to show mercy.  That’s amazing to think about.  Thank you God for showing mercy.

Psalm 116

I love the Lord because he hears my voice and my prayer for mercy.  Because he bends down to listen, I will pray as long as I have breath!…I saw only trouble and sorrow.  Then, I called on the name of the Lord:  “Please, Lord, save me!”  How kind the Lord is! How good he is!  So merciful, this God of ours!  The Lord protects those of childlike faith; I was facing death, and he saved me.  Let my soul be at rest again, for the Lord has been good to me.

POST UPDATE (BY AARON)  It is so great to be able to walk again!!!!!  PRAISE JESUS!

I do not even know how long it has been since I have gotten a good nights rest.  At least a few weeks.  But last night I DID!  It was absolutely wonderful.  Praise God!

The doctor said I may be discharged [again!] as early as tomorrow.  What this means is they want me out of here and will do everything they can to give us the boot.  But there is always a chance it may take an extra day.

I would be a lot more excited about this except that I am still in a lot of pain.  Even on a high dose of pain meds, I can barely walk (hobble) a few feet before I have to sit down because of the pain.  The doctors think that this is simply a part of meningitis and will go away slowly.  If they are correct, great!  I am concerned, though, that there may be something else, like a pinched nerve, that needs to be addressed.

I have a special prayer request: NewLeads (my employer who is patiently waiting for me!) is heading into its “busy season.”  I desperately want to contribute and think this should be possible, we will just need to be creative in figuring out how.  So please pray that my bosses and I can come up with ways that I can do a little work!

God bless you all so very, very, very much.

At 2 a.m. last night, Aaron started feeling the worst pain he has ever felt in his whole life.  If you have never seen someone you love in excruciating, agonizing pain which is so bad that it elicits continuous moaning and sobbing, then thank God right now.  We had another sleepless night because of this pain that could not be touched by the amount of medication they were willing to give him.  After a couple of hours of this, we stopped everything and we prayed that God would relieve this severe pain.  We trusted Him together because that is what He says to do in His word: “Call unto Me in the day of trouble; I will deliver you and you shall glorify Me! (Psalm 50:15).  We are told to trust and expect deliverance throughout the whole Bible.  After we did that, immediately Aaron’s pain was relieved.  But, it was relieved in a strange way.  It was as if his pain had hit its absolute peak and his body had shut down the pain. However God chose to accomplish this, it was amazing.  Aaron went from writhing around in the bed whimpering to sitting at his computer and reading www.engadget.com.  It was absolutely incredible.  So, we are glorifying God for this miracle He did for us.  Believe what He says in His word and trust Him completely.

“Meningitis” is an ugly word. But what choice is there to describe an inflammation of the sac-like membranes that enclose the brain and spinal cord when those membranes are called “meninges”?  And what choice have we when the doctor, having bonked Aaron on the head and noting the sharp pain that shot from the head into the extremities, declares the diagnosis unequivocally?  It certainly fits with the headaches, intermittent confusion, delusions, and fevers topped off with intermittently debilitating stiffness and pain in the back, neck, and various muscles.

Unlike pericarditis, whose cause is generally some unknown microscopic bug, meningitis is usually caused by identifiable bacteria or virus.  Thus far, none of the usual suspects have been identified in the cerebrospinal fluid (CSF) sucked out in last night’s spinal tap.   But there are any number of exotic causes, among them  leukemic blast cells, which do not appear present among the abnormally large number of leukocytes present in the CSF. For this we are relieved and grateful.  

Dr. Paquette suggests this most recent big word added to our vocabulary by Aaron’s penchant for new maladies may be yet another consequence of the very high cytarabine dose.

Aaron’s return to lucidity, his reduction in pain to an easily managed level, a move to the much nicer room 808, and  Fever in full retreat put us all in a much better mood, despite having to learn such an ugly new word.  

Yesterday may be in the running for the Guinness Book of World Records as the shortest discharge of a person owning both Xbox 360 and Nintendo Wii.  A  fever, actually, “Fever”, one of the demon legion so named, returned with a vengeance, annoyed that its diabolical ally seemed to be getting, however temporarily, trounced. 

Cold water, ice, and Tylenol could not seem to effectively reduce the fever much below a delerious104F, which had Aaron talking intermittent gibberish for hours.

So, on the order of Dr. Paquette,  back across the street to the ER we go for the second time in 4 weeks.

The PICC line is removed, yet more antibiotics consumed, and the hunt is afoot for the invaders.  After languishing in considerable pain for several hours in the emergency room, Aaron is wheeled to the  5^th floor and into a room whose bathroom was the scene of a post-Katrina vacancy.  A leak had rendered the walls a curious texture, and they appeared to be hosting colonies of mold.  A fine empty room on our good old 10^th floor has been rendered uninhabitably leaky by the first real Southern California winter storm that set upon us as the invaders were setting upon Aaron.

Eventually, Room 809 offers refuge from both fungus and deluge; the fever comes down somewhat.  In the event that there may be some insidious infection lodged in the spine, the second spinal tap in a week is performed. 

It has been a hard day.

That pretty much sums up this last hospital visit (well, other than God’s incredible goodness, which really does far supersede all the crummyness!).

For me, this last visit was reminiscent of my very first stay of May/June/July 2006.  Thankfully, it was ONLY reminiscent, though, as the actual events were quite different and not nearly as drastic.  But still, the underlying pinnings were there: it was scary, painful, and I even lost a little bit of time, though waking up a few hours later wondering where I am is A LOT different than waking up SEVERAL WEEKS later wondering where I am.

Of my 5 lengthy hospital stays so far, this last one was actually the second most painful.  The most painful was, of course, the first one (and by a long shot!).  This last stay was also very frustrating.  I do not want to explain this too much b/c it mostly entails talking poorly of some of the doctors, nurses, and staff and I would just rather not do that.  So let’s just leave it this: the wrong ingredients kept coming together and getting prepared, cooked, and served in a bad way.  I have no doubt I even contributed here and there!  The result that made it to the table was often a big plate of frustration and it was always very painful to eat it.

Anyway, we were discharged yesterday!  We have numerous immediate follow-up things to do, so we will stay down here at the Tiverton (right across the street from the hospital) for at least a week before marching back to Natalie’s parents, who have continued to graciously open their home to us, the homeless Boydstons.  Please pray for my pain condition: that I will be able to wean myself off of the narcotics while controlling what pain I do have and not experiencing horrible withdrawals.

God bless you all so much!!!

White cells re-appear in his blood as the last of Aaron’s hair disappears from his head. All systems seem to be returning to normal, and the weaning process from heavy pain killers is beginning.  Maybe just a little too fast.

The dreaded spinal tap headache never materialized on Friday. Maybe it was just slow  coming, as Saturday is a different story. A splitting headache and nausea dominate the day from early until sunset. So severe is the headache that another head CT scan is ordered.  

Only good is seen in the scan; the tumor, 3 weeks ago the size of a robin’s egg, has shrunk to less than  ½ inch across; it’s now a medium size hummingbird egg, though one even Hitchcock could not have imagined a bird so perverse would lay.

Today Aaron is better; his white blood cell count is stretching for the low side of normal. Dr. Glaspy declares neutropenia is past.  Normally, this would indicate a change of cuisine, but tomorrow being President’s day, a menu change from special low-bacteria hospital food to normal (though not stated on the menu, we assume that would be high-bacteria) hospital food is not possible. 

A couple days of more weaning, and Aaron may qualify for a few days beyond the purvey of the hospital kitchen.

Today, the doctors will insert a needle into my spinal cord, suck out some fluid (for testing) and spit in some chemotherapy.  This will give the chemo a chance to reach an area it normally can not get to from the regular flow of blood.  It sure does not sound pleasant, but it should not be too bad.

Also getting platelets today, which means I am incredibly, super duper drowsy right now becaue of 50mg of IV benedryl.

UPDATE: Yet another theory!  Dr. Paquette stopped by and lent his thoughts as to what happened.  He thinks the unusually high dose of chemotherapy caused the problem with my eye and caused the lining of my heart to get inflamed.  I prefer that he is correct here because his theory involves little to no long term heart damage!  Praise God!

Last night, I went for my first walk as a “heart patient!”

Last time I was up and about was a week ago last night, just before my eye started bothering me (which may have been the start of my heart problem, or just coincidental).  It seems like ages ago, it has been such a scary 2 weeks.  But the walk was very nice.  I went maybe 30 yards, which was over doing it a little.  I can not describe the very-strange tiredness that stems from an injured heart.  It is just weird.  I got back to my room and felt a lot better only after a few minutes of lying down.

God bless you all!

When Aaron began having chest pain on Friday night, a true lesson began in not trusting in the wisdom of men but in the power of God.  There has been a real uncertainty and confusion amongst the doctors as to what happened to Aaron’s heart that persists even to this moment.  Friday night was honestly pretty scary when they switched rooms on us in the middle of the night so that Aaron could be connected to a heart monitor.  We really had no idea what was happening then.  On Saturday morning, the oncologists came in and said they thought it was a heart attack.  The cardiologists came in and said they thought it was swelling.  Sunday morning, the two groups reversed their positions.  What both groups agreed on was that whatever was happening, Aaron’s troponin level was so high that it indicated the heart had taken a hit and suffered some significant damage.  Since the cardiologists didn’t want Aaron to be having a major heart attack under their noses, he had an angiogram on Sunday morning.  There were several risks involved in having the angiogram but you all trusted God together (thank you for your prayers!).  God heard and answered our prayers in an amazing way.  The angiogram went completely without complication and God sent Dr. Lee, a brother in Christ, out to meet us.  Before he started the procedure, he gave encouragement and helped strengthen our trust in God.  So, after the angiogram showed no major blockage (Praise God!!!), on Monday morning the doctors all came in suggesting the problem was an infection that caused inflammation.  As of Monday morning, they were also sure that the damage to the heart had stopped occurring.  Today, the doctors are coming in saying the problem with Aaron’s heart was probably more like a heart attack that occurred when micro-capillaries were blocked with something like leukemic cells or a sludging of blood.  But, I very much expect the leading theory to change by tomorrow, if not this afternoon!  During this whole time, I have been thinking about Peter when he wanted to walk out on the water to Jesus.  All the conflicting theories and test results that keep coming are just like the waves that Peter saw all around him.  Peter should have kept his eyes on Jesus and not on what was going on around him.  That is what I have been trying to do through this stormy sea that we are walking on right now.  I am trusting in the power of God and not the “wisdom” of the doctors or the test results.  God has been so good to us thus far.  I have never seen Him do anything other than what He says in His word.  He is most worthy of our trust.

Thank you, thank you, thank you to Nathan Stryker and Lynn Watson for turning the comments back on.  You both are geniuses!

If anyone tried calling the number we gave for Holly Collier (regarding stem cell testing) and did not get a hold of her, it was because we posted the wrong number on the February 6th post.  The real number is 714-800-1612.  She will be happy to help anyone who has any questions regarding stem cell testing or hosting a stem cell drive.

Thank you for your continued prayers.  Things to pray for specifically:  repair of the damage to the heart, no further complications while Aaron has no immune system, wisdom for the doctors regarding a spinal tap/chemo injection into spinal fluid, strength to be here–it’s hard.  Praises:  Aaron is sleeping better, he is feeling better, they eye pain and chest pain have been reduced to a mild discomfort, the problem with his heart could have been way worse, his fever broke Saturday night and hasn’t been back since!, that He sustained us through a fearful time.   We love and appreciate you all.

Give to the Lord the glory he deserves!  Psalm 96:8