The 1040 Window

I had my third round of brain frying today.  After my first brain cooking on Monday, I was very tired and slept most of the day.  Tuesday brought a very sore jaw, like someone punched me, and a not-too-bad headache.  Today I woke up hurting all over, not too bad, but enough that I was not up to walking the 10 minute trek to Dr. Paquette’s office, so Natalie wheeled me in a chair.

The mass in my brain has actually grown, so it is good that we are not wasting any time moving forward with treatment.  Time is one of the big advantages of using the cord for the transplant.  Using a person would end up taking a few more weeks which could be very bad at this point.

Anyway, overall, I am not too bad, which is good b/c I am not supposed to be too bad yet but after the full body radiation (which starts on Monday or Tuesday), it is expected that I could be really miserable.  But hey, no big deal.  The important thing is that I survive it and that has already been settled!  Praise His name!

Aaron will begin 6 days of brain radiation this Monday, March 26th.  He will be admitted to the hospital on the following Monday, April 2nd.  Once admitted, he will receive 4 days of Total Body Irradiation followed by 2 days of strong chemo.  He will then get a day of rest.  The following day, he will receive his new stem cells.  It will take up to 30 days for the stem cells to engraft.

We have “called for the elders of the church” to lay hands on Aaron before he begins his stem cell transplant.  This will take place this Sunday, March 25th, at Ojai Wesleyan Church at 3:00.  Anyone who wants to attend is invited!  Hopefully, we will be having representatives of other churches in the valley participate in the laying on of hands.  We would love to see you there if you want to participate in this time of prayer that is very important to us!  After this event, we will leave for UCLA and remain there until the transplant is over.

Specific prayer requests:  That the stem cells will engraft and not be rejected; for protection from the many dangerous and severe side effects; for protection from infection; for wisdom for the doctors and nurses; for strength for all of us; for God’s perfect timing as He is orchestrating every single detail; that God’s mighty power will be seen, recognized and turned into praise from all who witness what is going on with Aaron.  We are fully relying on God for healing.  We expect to see Aaron completely healed and are waiting (as) patiently (as we can) on the Lord for this!  We acknowledge the miraculous healing that God has already done and we know He is faithful to complete what He has started.  Thank you for your continued love, prayers and support.  Be prepared to be amazed by what God is going to do in the next few months!

“We’ve come this far by faith, leaning on the Lord, trusting in His holy Word, He’s never failed us yet!” Albert A. Goodson

Dr. Paquette called me today but got my voicemail.  His message began with the words, “since I am calling with good news, I can leave it as a voicemail…”  The results from my bone marrow biopsy (did I mention that I do not enjoy those?) came back and I am in remission!  Praise God!!!

Now before you get too excited, though, being in remission does not mean too much at this point.  While it is a VERY GOOD thing, it does not change treatment in any way and may or may not affect the long term outlook of the situation.  The main thing it does (as far as I understand) is produce a much better environment for the stem cell transplant to take place.  And it is wonderful and encouraging just to hear the words, “In remission!”

Also, I had an absolutely wonderful time at my birthday party.  First of all, I was able to attend!  And for the whole day, to boot.  Many, many thanks go out to so many of you for coming, or praying with us, or just sending a birthday greeting, and for some presents too!

I continually thank God for your love and support.

PLEASE COME TO MY BIRTHDAY PARTY!!!
 

When: This Saturday, March 17
Time: 2 – 10 pm  Come all-day or anytime; I am planning on being there the whole time, though I will probably be taking little naps here and there!
Where: 1624 Foothill Rd.; Ojai, CA; USA; Earth
What: Just a good time together and lots of video games! 
Who: Everyone is invited!  To be frank, I did not have enough energy to send out invitations, so I am counting on ya’ll to spread the word and invite anyone you think may want to come.  Thanks!
Prayer: We will be having a special time of prayer at 8:00 PM because I will be starting my stem cell transplant very soon.  If you are unable to attend but would like to “pray with us,” please do so!  We will start praying at 8:00 sharp, so if you also pray at 8, you can be sure we will all be praying together in the Spirit.

God bless you all and I hope to see you on Saturday! 
 

In His Grace, 
Aaron

Yesterday, Natalie and I traveled down to UCLA for some more tests and procedures to bring me closer to starting the stem cell transplant. 

Thankfully, I did not get another spinal tap with chemotherapy.  Although they usually affect the patient very, very mildly, the spinal tap I got last week hit me hard.  I was extremely nauseous and felt really awful all last week.  So I was filled with joy when Dr. Paquette said we would not do another one! 

To balance the day out, though, I did get a bone marrow biopsy.  Basically, they drill into the bone and remove a small cylindrical sample of the bone about the size of a skinny, very short toothpick.  The drilling is really a slow grind and as Dr. Paquette was grinding away, I quickly remembered why I do not like bone marrow biopsies!  They are miserable and in a very unique way which makes it worse.  It is hard to describe but just imagine someone drilling/grinding into your bone.  You should be cringing right now and mad at me for making you think about it!  I do not know how long it will be sore for, but the pain has let up a little bit after 24 hours. 

The current estimate is that I will begin the transplant in about two weeks. 

God bless you all so very much!

Thanks to all who helped by organizing, sponsoring, praying, and swabbing! We gathered 222 tissue samples from the three drives, plus many more from out-of-area cousins, uncles, aunts, and friends! The tissue-typing lab will be expediting these last batches. Pray for the lab crew! Another 300 swabs were expedited today for a little boy with the same time crunch as Aaron. We have done everything we can on our end. The rest is up to Aaron’s body, his medical team, and the Lord (not necessarily in that order!) Aaron is home, recovering from Wednesday’s second dose of spinal chemo and not as nauseous as earlier this week. Again, thank-you, and lots of hugs to all!   love, Aaron’s family

We are currently in Ojai, staying with Natalie’s Parents.

I had a barage of tests yesterday down at UCLA, very tiring.  Also had more chemo injected into my spine; feeling pretty nauseous and bad overall.

The transplant should start in a couple of weeks.  Dr. Paquette is leaning towards using stems cells from an umbilical cord because the one remaining adult donor did not match closely enough.  Dr. Paquette wants to get this done as soon as possible.  Please, pray for a great amount of wisdom from God for Dr. Paquette–there are a lot of decisions to be made.  A transplant is a very serious ordeal. 

Next week I should get another shot of chemo in the spine and a bone marrow biopsy in order to know exactly what the status of the leukemia is.

Thank you to all who have been organizing the stem cell drives and to all who turned out for the drive in Pomona.  It would be such an amazing blessing if a match came from one of these drives for someone in need.  There are two more drives coming up:  March 10th in Santa Barbara and March 11th in Ojai.  For more info on these two drives, scroll down a couple of posts.

For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.”      Jeremiah 29:11

I love you, sweetheart!

Here’s some upcoming stem cell donor registration drives. If you can’t be a donor, consider sponsoring someone! We are in need of sponsors! We would hate to see the fee keep any willing person from donating. Call Anne at 646-0740 (the area code is 805) or e-mail: boulderhaven @ sbcglobal . net (remove spaces when emailing)

At the stem cell donor drive, you will fill out paperwork and get your cheeks swabbed. Your name will be added to the National Stem Cell Donor Registry. If you happen to match Aaron or anyone else in the future, you will be asked to do further testing (a blood test). Should you closely match someone in need, donating stem cells is like giving platelets. The likelihood that you will even be called to take the second step of further testing for anyone in need is very, very slim.

WED, MARCH 7 Pomona 1:30-7:30
Pomona First Baptist Church
586 N. Main St., Pomona
Call 909-629-5277, ex.8081 to schedule time.
Tissue typing fee: Free
(City of Hope is picking up the tab so they would love it if you chose to donate blood that day.)

SAT, MARCH 10 Santa Barbara 10am-2pm
Christ Presbyterian Church
36 E. Victoria St., Santa Barbara
Tissue typing fee: $52 (grants available)

SUN, MARCH 11 Ojai 12:30-4:00
Church of the Living Christ
190 E. El Roblar Rd. Meiners Oaks 805-646-1296
Tissue typing fee: $52 (first 80 people, $25)

** If you’re short on funds, come anyway! We have sponsors!
Donors must be between 18-60 years, and in general good health.
** FREE tissue typing for all minorities. (Hispanics, African Americans, Asians, etc.)

If you have any questions, visit www.marrow.org or feel free to contact any of us Boydstons!