The 1040 Window

I’m so sorry we’ve failed to update this Blog. We sure intended, but none of us suspected how exhausting the transition from UCLA to Home would be. Natalie has been doing double and triple duties as wife, nurse, mom, teacher, and “move supervisor.”  We have settled in for the most part. It’s so good to be among our Ojai family and friends once more.

Great news concerning Aaron: His Graft vs. Host Disease seems to be finished bothering his intestines, allowing him to gain some weight. In the last month he went from a way too light 106 lbs. to 123 lbs (still real slim but so much better!) Praise God! I’m sure happy to see him looking more like himself and less like a scarecrow.

Doctor Paquette saw Aaron a week ago and said, concerning his progress, “I’m very happy!”

Please pray that this slow recovery does not wear on Aaron’s spirits. I know he would like to get back to his “real” life. Thank you all for your continued love and support. It makes a difference.

Thank you for all of your prayers.  I am feeling much better, praise God!  I went to the doctor on Monday and it was my turn to get an EKG and be hooked up to the pulse ox.  It was very strange to have those done for me after watching Aaron have those things done a billion times.  I have been taking medicine for an ulcer this last week and am doing much better.  The doctor told me I can’t have any coffee though.  Aaaahhh!

I, too, wanted to express my appreciation for everyone who participated in the rummage sale in any way.  It was a tremendous blessing!  We had a great time working with everyone who volunteered.  And, the things that were donated!  We shouldn’t even have been able to call it a ”rummage” sale–we had so much nice stuff!  The love of God has been demonstrated to us in so many ways and through so many different people since Aaron became ill.  We are so thankful for everyone’s continued prayers, support and generosity.

Aaron had a pretty bad night last night.  I have not had to call his doctor since we have been in Ojai but I had to do that last night.  His nausea has been a constant problem since he got out of the hospital.  It has been such a problem that he has gotten down to 110 pounds.  Some days are worse than others and it takes a lot of attention and thought to manage it.  We have always assumed it was most likely a side effect of the drugs. But, it kind of seems like we might be looking at graft versus host disease.  Aaron was in so much stomach pain last night that I had to call his doctor.  Dr. P said to give him some prednisone and, if that worked, it was probably graft versus host.  Aaron has felt a lot better since taking the prednisone so we will have a lot to talk about at his next doctor’s appointment (this week).  If you feel like reading about what GVHD is, I found this website to be helpful:  http://www.medicalistes.org/gvhd/docs/what_is_gvhd.html.  One thing to point out is that a little bit of graft versus host is actually good!

Last night was one of those nights that I really realized I had a choice:  panic or trust God.  In the moments after Aaron was first diagnosed, I realized that I had that choice, as well.  This whole trial has been about me learning how to give my problems and concerns to God.  When I do that, I have always found that I am blessed.  I start to understand that there is something bigger going on than what I can see.  As I chose to trust last night rather than fear, I began to see that God had everything under control.  I knew that being started on this new medicine at this time might be just the thing his body needs to heal.  For all the doctors know, only God knows exactly what is going on inside Aaron’s body and He balances all the intricate systems within Aaron.  Within us all, actually!  I also began to see that God’s timing and provision is perfect.  Our dear friend from church came over to help me organize some of our things since our moving in is slow-going.  Not only was she able to help do a bunch of that, but she was here to help keep the kids company while I tended to Aaron.  We all prayed together and God answered by making Aaron’s pain–that seemed like it would never go away–much more manageable.  Thanks, Sarah!  God provided for our needs through you and you helped get us through a tough night! 

I just wanted to share what God was doing in our lives since I haven’t had much of a chance to do that lately!  God bless you all!

My eyes are small but they have seen the beauty of enormous things which leads me to believe there’s light enough to see that:  You make everything glorious, You make everything glorious, You make everything glorious and I am Yours!–David Crowder Band

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!  Psalm 116:1,2

The last few days have been extremely miserable for us. Natalie has been feeling sick which, we discovered yesterday, has been caused by a peptic ulcer. When the doctor told her what the problem is and she yelled, “oh praise God, just an ulcer!” he said her response said alot about what we have gone through lately. Pretty funny.

I cut my pain medicine in half so I have been having pretty aweful withdrawals the last few days. Very miserable. I hardly need any pain medicine anymore, I have mostly been taking it to avoid bad withdrawals by slowing lowering the dose. But I came out of the hospital on such a high dose, that it has been taking a long time to get the dose to a low level. So, being a little impatient with the progress, I decided to take a plunge and bear thru some suffering. I am coming out of the withdrawals now and my dose is a very reasonable level from which it will be pretty easy to get to a really low dose. In a few weeks I should completely off a regular schedule and be able to only take it “as needed.” One less drug in my body will be good!

A few things I want to touch on:

We get alot of people contacting us here on the blog in comments, cards in the mail, phone messages at home, via other people, etc. Often, I am not even up to picking up the phone unless it is my wife or parents. Although we don’t get back to all of you, know we appreciate hearing from you all so much!!!

The rummage sale was a great success! People donated lots of wonderful items so the sale had everything from the usuall “rummage” to very high priced items. I wished so badly that I could have been there to thank everyone personally but, alas, I could not. Thank you so very much to all that helped out in any way.

Please pray for NewLead’s (my employer) continual success as a business. They have been a HUGE financial AND spiritual support for us. There isn’t a more wonderful company to work for in all the world.

Also, I have finally been able to bring my steady weight loss to an end! I held it steady at 112 lbs for a few weeks and even gained a pound. Because of the withdrawals the last few days, I did drop down to 110, but it is just from the withdrawals, so once they are done I wont loose any more. Woohoo! Praise God!

Whew! I did not write much, but I am tired. I am gonna go lay down now…

God bless you all so very much.

It is so nice to be home!  It’s a very messy home right now and moving in is very slow going but we are here and not in Westwood!  Praise God.  When we left for the stem cell transplant in April, I put a sign up on “our” pew at church–”We will come back…God will provide.  Genesis 22:4,6.”  I got to write “Told you so!” on the sign when we got back to town!  ‘Tis so sweet to trust in Jesus!!!

Aaron mostly sleeps and watches movies right now.  He doesn’t have a lot of energy for going and doing things at all which is probably good because we still need to be careful about being around crowds.  Yesterday, Aaron finished the study drug–Maribavir–that he was taking for the prevention of the virus CMV.  It was a phase 3 study meaning that the drug has been tested on several groups of people already.  In a previous study, no one got CMV who took Maribavir following a stem cell transplant.  But 11% of those taking the placebo acquired CMV.  The only side effects of the drug that were mentioned in the previous study were “taste disturbance” and “nausea.”  We are hoping that since Aaron is now off of this drug that his nausea will go away.  He definately has been experiencing taste disturbance too–he can’t tolerate anything sweet, especially chocolate. Please, continue to pray that he will gain strength and will be protected from germs.

Reading all the beautiful comments that everyone has posted is a tremendous blessing for us.  It is so good to hear from our dear family and friends.  It makes everything worth it to read how your faith in our mighty God has been strengthened through Aaron’s suffering.  You cannot understand how much your prayers and help mean to us.  We have been incredibly blessed since we have been home to receive help from so many places.  I cannot even list how many amazing and unexpected things that people have done for us in the last two weeks.  We are thankful for the many who are giving of themselves to us so altruistically.  You are a blessing to us and we long to be a blessing to you.  Our God is a great provider!

Martha suggested, in one of her recent comments, that we post a list of things that we need help with.  Since so many people are calling, asking and offering, I think this is a great idea!  Here’s a few things: 

• Help sanitize dishes, toys, books, etc. so I can bring them inside the house!
• Help lift (and maybe transport) boxes that are too heavy for me (I already hurt my back!)
• Help sort items for the rummage sale (call Aaron’s mom or Kathy Thomas.)
• Help by telling others about the Rummage Sale (see details in previous post)
• Provide a high-caloric dinner for just Aaron (the rest of us are on diets!)

Those are the top few things we need help with now.  Anything else you could think of yourself, would be much appreciated too.  Sometimes we don’t even realize we needed something and God prompts someone to do it.  Even cards, calls, visits, etc. help a lot.  May God bless you all as richly as He has blessed us!

I want to encourage you in your faith, but I also want to be encouraged by yours.  Romans 1:12

It has been a busy week of transitions. A normal move is difficult enough, but Natalie has the additional job of setting up a sterile-as-possible environment for Aaron’s still new immune system (If it can’t be sanitized, it doesn’t come in!), plus piecing together all their belongings that were packed by friends and family last summer and stored in various places. It has been a mix of frustration (they just got phone/internet service yesterday!) and joy (Home at last!)

Monday Aaron returned to UCLA for his weekly check-up. Doctor Paquette was so pleased with his progress he’s letting Aaron wait two weeks between appointments. Praise God! Though Aaron is still very weak, I can see “baby-step” improvements each day. He’s moving more, talking more, and fiddling with this and that more. Tonight he attached speakers and various cords to his laptop so we could watch a movie (Their TV hasn’t made the move yet…) His appetite is improving and he shaved for the first time yesterday. Little steps, yes, but all in the right direction.

Of concern: Late tonight Michaela spiked a fever of 102F and is nauseous. Please pray she gets well and her Daddy doesn’t “catch” her bug.

Of interest: The Wesleyan Church is sponsoring a RUMMAGE SALE on Saturday, August 11, 8:30am-4:00 pm to help with some of Aaron’s remaining debt. Donations of salable items can be dropped off at Fellowship Hall. The sale will be lots of fun!Come by and visit. If you have questions or would like to help sort, email me: boulderhaven@sbcglobal.net

It’s late and everyone is tired so more details will follow, but

PRAISE GOD, Aaron, Natalie, and kids are back in Ojai! 

Yet, another prayer is answered, and just in the nick of time.  In the next couple of weeks I will be getting to the point where I no longer need intensive and close monitoring by the doctors.  This means that it is getting close to go-home time!  Back to Ojai.  Wow!

You may remember that we moved out of our previous apartment because of mold, which we did not want to risk affecting me negatively when I got out of the hospital.  So we have been homeless for quite some time now.  Natalie’s parents have been very generous, allowing us to live with them in between hospital stays but when we go back into Ojai this time, it will be to our own place!  We are very excited!  Praise God!

Well, just writing this little bit is pretty wearing for me, so time for me to rest!  God bless you all so very, very much.

Aaron had another weekly doctor appointment.  We were pleased to be able to report to the doctor that Aaron had a better week with eating overall but especially on Sunday.  It seems that reducing the medication last week has started improving his nausea.  Also, the reduction in medication last week seems to have improved Aaron’s kidney function.  For awhile now, Aaron’s kidney has been getting mildly damaged from the medications.  This is the first time in a long time that his kidney function has been close to normal.  Dr. Paquette responded with glee when he read the labs today.  He seemed pleased by all of the numbers.  Dr. Paquette called off the scope (that Aaron was going to have done to look for the source of nausea) because Aaron improved some this week.  Aaron had some strong pain when the doctor pushed on his abdomen which is about the only thing of concern that arose during the appointment.  Again, Dr. Paquette doesn’t know what that pain is but he doesn’t believe it is graft versus host disease.  Aaron lost more weight during the week even though he seems to be doing better–he now weighs 119.6 pounds.

Dr. Paquette is going to be on vacation next week and said that Aaron could skip his weekly appointment next week–he doesn’t need to schedule an appointment with another doctor.  I’ve started praying that Dr. Paquette will have a relaxing, safe and blessed vacation.  We are so appreciative of his care and consider him to be a blessing from God.  God chose just the right doctor for Aaron.  We have met all of the other oncologists and Dr. Paquette is the most caring, helpful, encouraging, wise and trustworthy physician of the whole bunch.  He gives of his own time without complaining and is always quick to respond to our questions.  Praise God for using this man in His healing of my husband!  The next time Aaron will go for an appointment, unless he is having some sort of problem, will be on Day +96.  That’s exciting to think about!

Some of you have asked about the significance of Day +100.  It dosen’t mean anything concrete really.  The first 100 days post-transplant are very critical.  There are a lot of rules that have to be followed for the patient’s safety, blood counts are all over the place and the need for many medications is high.  After day +100, rules are allowed to be relaxed a bit (although we probably won’t relax too much–I’m super cautious!), blood counts don’t fluctuate so much and medications are reduced a lot.

Thank you so much for your love and support.  We are looking forward to when we can be back home in Ojai.  Please, pray that God brings that about soon and give Him glory for the marvelous things He has done through Aaron’s sickness.

For who can know the Lord’s thoughts? Who knows enough to give Him advice? And who has given Him so much that He needs to pay it back? For everything comes from Him and exists by His power and is intended for His glory. All glory to Him forever!  Romans 11:34-6 

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