The 1040 Window

Just a couple of things to keep you caught up!

Aaron had his weekly doctor appointment on Monday.  He is still struggling with a lot of nausea which is totally not typical, especially this far away from the transplant.  Dr. Paquette lowered the doses on some of Aaron’s medication which he has more freedom to do as we get closer to the +100 days milestone.  So far, the reduction in medication has not seemed to make any difference with the nausea.  So, the doctor talked about doing a scope to check for GVHD, if Aaron doesn’t improve soon.   Graft-versus-host-disease can attack the stomach and the intestines but Dr. Paquette doesn’t think that is what it is because Aaron isn’t showing signs of GVHD anywhere else.  Aaron lost 5 lbs since last week and he is now 122 pounds.  He seems to alternate with good days and bad days.  It really is all about the uncontrollable nausea right now.  Otherwise, he is doing amazingly well.  Everyone is surprised that Aaron hasn’t had to have even one transfusion since he left the hospital.  That is also unheard of!  Praise God for taking such good care of Aaron (and us all)!  Please, keep praying for Aaron to be less nausous.  The last few days haven’t been too bad but today he’s having an awful day with it.

Today is Christopher’s 4th birthday, and although I haven’t been up to planning a celebration for him, we are overwhelmed with gratefulness that Aaron can just be with us today.  Last year, Christopher only got a few minutes on his birthday to spend with his Daddy because Aaron was in the hospital.  Christopher got a huge bouquet of balloons from sister this morning, so I think he’s feeling pretty special!

I praise Your name for Your unfailing love and faithfulness; for Your promises are backed by all the honor of Your name.  As soon as I pray, You answer me;  You encourage me by giving me strength.  Psalm 138:2, 3

Taking care of Aaron these days reminds me a lot of taking care of the kids when they were newborns.  I am incredibly busy all day long but, at the end of the day, I can’t really say what I did except, “I took care of him.”  It is a constant stress to make sure we get all of the pills down him and (hopefully) in a way that doesn’t make him vomit them right back up.  We have developed a system which, Praise God!, has been largely successful so far.  The secret ingredient has been IV benadryl.  Aaron still has his PICC line in his arm so, about 4 times a day, I give him his dose of benadryl through his IV.  He is taking the maximum daily dose of benadryl that you are supposed to ever have.  This has been a concern to all of us but the doctor says if it is working, do it.  Aaron is taking very little food and his pills are for the prevention of rejection and infection.  The IV benadryl is the only thing that seems to keep the food and the pills down.  Dr. Paquette said he hadn’t ever heard of benadryl working like this for someone.  Benadryl is so much safer than some of the other anti-nausea drugs.  I like to think that God having Aaron’s body respond only to benadryl could very well be His way of protecting Aaron from the scary neurological side-effects of the other drugs.

Aaron is really thin.  I like to say he’s skin, bones and hair because his hair is growing back so much.  Dr. Paquette attributes the nausea that is preventing Aaron from eating to the pills he is taking.  The doses of almost every drug have been reduced over the last 3 weeks.  So far, their reduction has not improved Aaron’s nausea at all.  Aaron has his weekly checkup tomorrow.  Please, please pray for wisdom.  It almost seems to me like they should be looking into other possible problems and not just assuming its the pills.

Biblegateway’s verse of the day today is 2 Thessalonians 3:3–  But the Lord is faithful, and He will strengthen and protect you from the evil one.  I love this verse!  It reminds me that God is committed to helping me with the absolute daily physical exhaustion I feel taking care of my sweet husband as well as helping me as I strive to keep my eyes unflinchingly on Him in faith.

Today was a slow day for Aaron’s stem cells; he is officially neutropinic again (no immune system for all practical purposes.) This is not unusual, and the reason he must stay near UCLA for 100 days.Why the sudden drop in white blood cells? Sometimes the powerful antibacterial drugs needed for the transplant will wipe out new white blood cells.It’s that old Catch-22. Tomorrow Aaron will get some blood and that should perk him up. He did eat a little today, and it stayed down. Praise God! Continue to pray about his eating. Aaron has lost 50 pounds, weighing in at 127 pounds. He’s all skin and bones. Doctor Paquette took him off several drugs and is hoping this will give his tummy a rest.

Thanks for your steadfast love.

Here’s another question from Pat Hartmann:
When you are being strong for everybody, who can you be real with?

I have been surprised how many well-meaning Christians make it hard to be “real”. There were times when I wanted to share the burden of my fears but felt “hushed” by their belief that thinking and speaking any negative thoughts would demonstrate a lack of faith and “mess up” Aaron’s healing. Thank God, I have learned it’s not the quality or quantity of my faith, but the object of my faith, Jesus, that matters. I am encouraged that Jesus said, “Your faith has made you well; go in peace” and not “Your perfect, immeasurable, unsinkable, flawless faith has made you well.” I’m trusting in my Savior, not in how much faith I can conjure up. Having faith in my faith, feels like another form of “works.”

One of the several people I have been able to be real with has been Aaron himself. His God is very Big, and not tripped up by the littleness of my faith. Aaron has never asked “Why me?” but trusted in his Father God, and is honored that God has used his illness to touch lives. A key verse for him as been: “For you have been given not only the privilege of trusting in Christ, but also the privilege of suffering for him.” (Phil.1:29)

Today Aaron spent a few hours at the hospital clinic with Dr. Paquette. He is sure that Aaron doesn’t have a bowel obstruction,which is good news, and believes the nausea is completely from his drugs. He did get IV fluids for a few hours to replace what he lost earlier today from vomiting. We’re glad he didn’t end up back in the hospital. Across the street is just fine. He’s comfortable this evening. I’m hoping he takes a couple bites of his Father’s Day mega-cookie baked by Kathy Thomas.

Here’s one of several questions emailed to me from Pat Hartmann and my answer.

How do you reconcile the urge to get one million people praying with the “God is in control” mindset?

We are told in scriptures to pray for the sick. Yet, in spite of out prayers, the sick often die unnaturally young. Have our prayers failed? Thousands prayed for Aaron’s big sister, yet she succumbed to heart disease during her eleventh year. Was there not a single prayer that met some heavenly standard of faith? I think not. Was her death the by-product of man’s free-will: injured in the womb by a man-made toxin? Maybe. Or was it simply God’s will she join him in heaven because of some master plan we just don’t understand. Very possible. Do any of the above possibilities negate the command to pray for the ill? No! Ultimately, reconciling is a poor substitute for trust. When I don’t understand God’s will, I trust his character. Healing or no healing, I will not doubt the goodness of my God.

Continued concerns about Aaron’s vomiting and his bowels. Plus, Natalie and Michaela are both feeling under the weather. Lots of minors problems adding up to produce a challenging week-end. Please pray for the whole family. Love to all.

Today was just one of those all-around-nauseous days for Aaron that Natalie is “stinking tired of.” Most of Aaron’s stomach problems are from the very drugs that are protecting him from infection or Graft vs. Host disease. Please pray that Aaron’s tummy settles down so he can eat. Today he only had several spoonfuls of cereal and soup, and one single spoonful of ice cream. This is not the Aaron we all know and love!

Aaron’s appointment with Dr. Paquette went well. The blood labs look good with counts coming up. Several drugs have been dropped or reduced. Even his pain pills have been reduced a bit (to an amount that would put most of us into a coma.) We’re all hoping this will reduce Aaron’s nausea and he can start eating. He looks gaunt, but has better color since starting his multivitamin. Vitamins have been discouraged until recently because of possible interaction with some of his drugs. I sure feel better knowing he’s getting at least the baseline nutrients. He’s only eating about a cup of food a day, but none of his docs want him on IV nutrition. I suppose as long as he is increasing his intake a little each day they’re not worried. Getting his digestive system working is part of the program.

The shingles are improving and his low-grade fevers are gone. Praise God!

Aaron has hair! His eyelashes, eyebrows and beard came in first, now his whole head has a five-o’clock-shadow. We were told that the amount of radiation he received could cause permanent baldness but the Burke hairy-gene is prevailing!

Life in a hotel room with three adults, two kids, a hepa filter, medical and home school supplies, an IV stand, wheel chair, art materials, fridge, microwave, toys, a set of bunk cots, and more could be a nightmare, but we’re doing fine, grateful for such a great facility.

Thanks for all your prayers as continue on this 100-day march.

Aaron is still very nauseous, which makes eating difficult, but he is taking a few bits each meal. We just gave him his first multivitamin, which we are praying stays down. His pain level is constant, but managed by his meds most of the time. He has been running a slight fever and his shingles are acting up again. Positive news: His blood labs looked good this morning. His stem cells are working to undo all the damage done by radiation and chemo.

The Home-nurse made an interesting statement to Natalie this morning: “It’s your responsibility to catch the nurses’ mistakes.”

I know there are nurses and care-givers reading this blog. What do you say about the above quote?

That same nurse said some families commit to taking care of a patient before the transplant, and then disappear after the patient comes home. When choosing a transplant candidate, one of the factors considered is: Does the patient have a support group in place? The Home-nurse said he lost one patient because the family flaked out. This may be why he puts so much responsibility on the family. Of course, Pastor Shores always said “Don’t accept responsibility where you have no authority.” Regardless, Natalie keeps a watchful eye. Praise God.

Last night was very, very difficult for Aaron. All-over, deep bone pain. The discharge doctor wasn’t familiar with Aaron and gave him 8 times less pain medication than normal, which Natalie couldn’t get corrected until this morning. Watching a loved one in pain is one of the most helpless feelings I’ve ever experienced. If that doesn’t drive one to prayer… As soon as Doctor Paquette heard, he was appalled and brought the doses up to a reasonable level.

Aaron is doing better today. He actually ate a few bites of food, so thanks for the prayers.

After spending a few days in the hospital, Aaron improved a good deal.  However, last night (Sunday night), Aaron started getting nauseous, vomity, drowsy and weak again.  We don’t know why this happened all of the sudden.  His sodium levels are OK.  He is so nauseous that the nausea medication doesn’t work.  He can’t eat or drink.   Despite the change overnight, the team of doctors at the hospital decided to discharge him today.  It is a little frustrating leaving with Aaron in much the same condition as when he went in.  I guess colitis is not a good enough reason to keep him in the hospital.  Please, continue to pray for all of us.  Aaron is so uncomfortable.  Also, it is quite a consuming job trying to figure out how to take care of him, how to get the medicine down him and whether he is doing poorly enough to contact a doctor. We love and appreciate you!

What I have learned the most:

I need Jesus.  My need I now confess.  No Friend like Him, in times of deep distress.  I need Jesus.  This need I gladly own.  Though some may bear their load alone, yet I need Jesus.  Need Him in the sunshine hours.  Need Him when the storm clouds low’r.  Everyday, along life’s way, yes, I need Jesus.  (George O. Webster)