What a roller coaster ride!

Thank you so much for your prayers! The doctor took a lot of time with us on Friday and answered lots of questions, which we really appreciated. As it turns out, they are NOT recommending chemo--for all the reasons that we were originally told. It is resistant to chemo and surgery is the best treatment. He is not even recommending surgery at this time (although we will be making an appointment with a lung surgeon to get her take on that). Because all the spots are under 3mm and typically slow growing, they want to continue the scans to watch them and observe the changes over a longer period. Another scan is scheduled in 2 months. If any of the spots appear to be acting up or growing too fast, then we will see about the surgery to remove them. Waiting also gives it time to see if any others will develop so they can get them all at the same time and not put him through any unnecessary surgeries.

The really good news is that there is a new drug that has had great success in leukemia patients resistant to chemo. It appears that the same drug is showing promise in soft tissue sarcomas. It is typically given to much older patients though, who take it the rest of their life. So they are not recommending that Aaron take it at this time due to his age. Further testing is needed, but it could be a very promising drug option for him at some point.

What a roller coaster ride! But we are feeling optimistic at this point. Aaron especially was tremendously relieved that he doesn't have to do chemo and left the meeting feeling very upbeat. I have to say, the doctors at Moore's Cancer Center have been tremendous!

Bad news again.

Well here we are at the end of November, just a little over a year since Aaron was first diagnosed.  Since his surgery in January, he has been getting CT & PET scans, chest x-rays, etc. as required, every 3 months.  His latest screening has brought us some bad news. The cancer has returned and spread to his lungs. They have discovered three spots in his chest/lungs. He has an appointment with a specialist on Friday to discuss options and it appears that he will need to start chemotherapy.  Prayers for wisdom are much coveted!

The doctor's not worried.

We're not real sure what showed up on the MRI, but the doctor doesn't seem to think it's a concern.   They will just continue the screening as planned.  Many of you have asked why they will be doing chest x-rays and CT chest scans.  They say the chest is where it is most likely to recur, so they keep a close eye on it.  Next screening is in August. 

The anticipated all clear is slow to come.

Something showed up on the scans that requires further investigation.  They are ordering an MRI.  The doctor doesn't seem to be worried...said it could just be scar tissue, but wants to err on the side of caution.  No date yet, just more waiting...VERY disappointing not to get the all clear as we anticipated.  Praying that it is still to come.

Back to Work

Today was Aaron's first day back at work!  I'm sure you'd be amazed as I am to see him bounding up the stairs as normal.  After all that conditioning he says that his leg that had the surgery is actually stronger than the other one. I don't think we ever expected such a total recovery.  He has a follow-up PET & CT-Scan on Thursday, so we are praying again for an all clear.  I want to take this opportunity to thank all of you who know and love Aaron for your prayers and encouragement.  You are a blessing to us!  Thank you for continuing to pray for him as he now has to deal with the constant follow-up and the anxiety associated with waiting for the test results.  Also, pray for him as he picks up the job search again for a career job.

Amazing Progress!

After the first week of physical therapy Aaron has made amazing progress.  We see improvement in his strength and mobility every day.  He's gone from hobbling to a nearly normal walk.  It's really quite incredible how the body compensates.  Our amazing brother in Christ, Greg Kenton, is Aaron's physical therapist.  I have to say, I admire Aaron's determination.  Even from the beginning when he was on his crutches he was adamant about doing things on his own.  Very hard for a mom to step back and watch her son struggle with the little things.  But because of his determination, he has made progress faster than we could have ever imagined.  He has surprised everyone!

A Few Small Steps

The staples came out yesterday and the results of the first follow up chest x-ray are in.  All clear!  The doctor continues to be amazed at how nicely Aaron's wound is healing.  He has been gradually putting weight on his leg and today took a few small steps.  It's a long road ahead, but those first steps are so encouraging!  Another week and he should be ready for physical therapy.  We have a lot to be grateful for today. 

A Shower - Finally!

Aaron is doing great. The wound vac and the cumbersome drains have been removed and the doctor is pleased with the healing process so far!  He still can't put any weight on the leg though. They want him to wait another week or two to allow it to heal before starting physical therapy, but he's managing nicely on his crutches. It's a lovely scar...about 12 inches down the inner thigh, but nice and straight and clean (31 staples!). He says from his angle he can definitely see an indentation, but from the front it's really not very noticable. Finally got a shower, too...WHEW! That has been nice for all of us :)

Update

Aaron was doing so well following his surgery that they decided to let him come home on Thursday evening (the day following surgery).  Although this was much sooner than expected, we thought it was wonderful news.  Aaron later didn't think so!  Transitioning from the nerve block in his leg, which they removed when he left the hospital, to oral pain medication was tough.  He had a very rough evening.  But after a late night call to the doctor and some adjustments to the meds, he is doing much better.  Last night he even managed on his crutches going up and down the stairs and had a nice visit with a friend!  He came home with drains in his leg and a wound vac (the official name escapes me) which aids in the drainage.  He also has to get a blood thinner shot once a day.  That job has been delegated to Rick since he was out of the room when we learned of this duty :)

Please pray for Aaron as he will need to begin decreasing the pain medication dosage.

God is Good

As the day of surgery approached, I have to admit that I was wondering what devotional from the 30 Days of Praise would fall on that day.  So many of them had been just what I needed for a particular day so I couldn't wait to read it.  The title was God is Good.  Ok, so I thought maybe "God is in Control" or "God is With You" might have been more appropriate for the day, so that is what I chose to focus on.  According to the doctor, the surgery went well.  She was very pleased and the margins are clear.  It was just what we needed to hear!  We felt a real peace all throughout the day knowing that God is control and that Aaron was being lifted up in prayer by so many.  As I sent out an email update late in the day I ended it with "God is good".  At the moment, I didn't even think about that.  It was what was in my heart.  But then a light bulb went off and I realized that was our devotional that morning.  I went back and read it again.  "God's purposes for out lives are rooted in His goodness."  It's a reminder to me that even when things don't go "my way", that I have a choice.  As pastor Doug said, "Our way to goodness, or His."  I hope I will always choose HIS.  

What's Ahead?

So far I have journaled this journey from the beginning up until today. Aaron's surgery to remove the tumor is coming up on January 20th. They will be removing one of the four muscles in his quadricep. They say the other three muscles will compensate. Surgery will be followed by physical therapy. That will be followed by screening every 3 months for several years before they taper off. They want to follow him for 15 years.


We really don't know what's ahead. My reason for starting this journal was so I could go back and read of God's faithfulness in the past to remind me that He is going before us, guiding every step, working for our good. This month I am learning to praise Him IN the storm--a lesson for a lifetime. Since I have the privilege of proof reading the upcoming devotionals for the 30 Days of Praise, I can tell you that I have already found new insight on how to do just that. I won't spill the beans, however, for those of you who are participating. It's not too late to join the movement! Just click on the 30 Days of Praise link to the left.


I am eternally grateful (literally) for that time many years ago as a young girl when I decided to trust Jesus with my heart and life. The most valuable lesson that I've learned along the way is that it's not about rules but a relationship. I didn't know then just how personal that relationship could be. I am so very confident of God's love for me, and for Aaron, and for you, too! What better person to trust your whole life to! If you would like to know more about how to have your own personal relationship with God, click on the Green Valley Church link to the left. Then click on Resources, and then Get to Know God. (And be sure and leave a comment so I will know that you, too, have started on this wonderful journey!)

30 Days of Praise

At the beginning of January our pastor issued a challenge: What would happen if, for 30 days, you took time every morning to praise God for who He is, and finished the day by praising God for what He had done? Our pastoral staff had been working on daily devotionals to send to everyone who signed up. I wonder if when they were writing them they had any idea of how each one would speak to me? God knew. And I'm sure that everyone participating is being blessed in a very personal way just as I am. But here are just a few in this first week that came on the very day that I needed it:

God our Hope - I went to Bud Brennick's memorial service on this day. One thing that really stood out from the devotional was "Hoping in the Lord is not wishful thinking. It is a confident assurance in the character and the presence of God."

God is in Control - Pre-surgery appointment for Aaron today. We had lots of questions about recovery time, returning to work, etc. and the doctor really tried to switch our focus from the short term to the importance of diligent screening in the years to come. It's a dangerous tumor. I don't want to go there. God is in control. Pastor Doug said, "if you looked closely you would see God at the keyboard" of your life. That's when I decided to write this journal.

Praise as Remedy for Worry - I need to hear and practice this one every day! I had the same thing happen to me one time in the airport. I started to reach for something while they were searching my bag and they said "don't touch it"! It's a great picture in my mind now to leave my worry to God and not take it back. Not easy though.

God in the Storm - A reminder that God is with me in the storm even when it's the last thing I want to talk about or when it hurts too much.

God is Loving - God's love is wider, longer, higher, and deeper than anything I can imagine. A confidence that He has given me that He loves Aaron even more than I do. I can trust Him!

God our Shepherd - He knows us and our needs better than we could ever know ourselves.

Christmas in Texas

Now here is a divinely appointed timeline if I ever saw one. Aaron's boss at work was only willing to give him 3 days off for Christmas. Now this was going to be a problem since our plans were to drive to Texas for Christmas. We felt like it was so important to be there with family that we were determined to go even if that meant driving straight through, staying one day, and driving straight back. (It's a 23 hour drive!) Much complaining on our part and it threatened to ruin our Christmas. The best he could get was a short morning shift on the day before we were to leave. So we left at noon on Wednesday and arrived late afternoon on Thursday of Christmas Eve. About 6 hours of that drive was through a snow storm that blew through Texas eventually shutting down a portion of Interstate 20. Now get this...if we had left a day earlier, we could very well have been in the Arizona dust storm that shut down Interstate 8. And if we had left any later, we would not have made it through I-20 in Texas. God knew just when we needed to be leaving and was not going to let our complaining get in the way. (And we were much too busy complaining to be praying, so it's a good thing that so many others were lifting us up!) AND we stayed one extra day anyway to allow Aaron to see his good friend, James.)

Treatment begins

We were told that this particular cancer does not seem to respond to chemo. The suggested plan was 25 treatments of radiation followed by surgery to remove the tumor. Aaron came home with the tattooed markings and drawn lines on his leg and announced that he would never get a tattoo! It's good to hear that he still has his sense of humor! (And I secretly thanked God for the "no tattoo" thing.) So the treatments began, 5 days a week for 5 weeks, taking us through mid-December. All those treatments and there were no side effects other than some slight redness at the sight of the tumor. What a blessing compared to the ravaging effects of chemo!

Hearing the good news

God knew that there was some good news that we needed to hear at that Monday meeting with the doctor. Our thoughts could have been paralyzed by the bad news and unable to hear the good news if we had not had that time over the weekend to absorb all that we could ahead of time. This cancer has a high rate of metastasis and the weekend was filled with dread of what the report would be. But the PET scan revealed that the cancer had not spread to other parts of Aaron's body. This news was so huge and so good that we came away rejoicing and praising God. Can you imagine? Finding out that your son has cancer and being able to rejoice all at the same time? The three of us were practically giddy. It was bizarre! I'm thanking God for that timeline!

Hearing the bad news

We had been told that Aaron has a tumor, but after MRI's, CAT scans, and a biopsy, we still didn't have a diagnosis. There was one more test, a PET scan, that would give the whole picture and then we would meet with the doctor for a full report. Aaron was with his Dad at this appointment and they just happened to sneak a peek at the chart and discovered that the doctors had given it a name. Alveolar Soft Part Sarcoma. Armed with this news we hit the internet and it wasn't long before we were extremely fearful. What we read gripped our hearts. That was a Friday and we had the weekend to absorb this news before facing the doctor on Monday. I am confident that God gave us this time to let the news sink in before hand. We were able to come up with our list of questions and be prepared for the next appointment instead of having our thoughts paralyzed by the news.

The doctor's referral

Once Aaron discovered the lump in his leg and decided to go to the doctor, an MRI was ordered. The doctor immediately called with the results that it appeared to be a tumor and that we should make haste to follow up with a specialist. He said that there was only one doctor in San Diego county that specialized in soft tissue tumors and gave us his name. A quick call revealed that he was not on Aaron's insurance plan. We weren't sure what to do now! Maybe go to LA? We didn't know how to proceed so we called the doctor back and he said he'd do some research to find a doctor for us. He found one! A doctor, new to UCSD Medical Center, specializing in soft tissue tumors. The first referral - an orthopedic surgeon. The second referral - an orthopedic surgeon who is also a surgical oncologist. God slammed one door and opened a better one.

The Insurance Dilemma

In January 2009, Rick's company was bought out and we had to make a change in our insurance plan. The cut off date for dependents under the new plan was 23 years old. Because Aaron was 23 and did not have a full-time job, we started the search for a private insurance policy. I can remember sitting in front of the computer screen with Aaron and reviewing various plans, deductibles, out of pocket expenses, etc. Only God knew what a huge decision this was. We discussed catastrophic plans with high deductibles and low premiums and decided that the deductible and out of pocket expenses needed to be reasonable even if it meant paying a higher premium. I am praising God constantly for that decision. I am confident that it's a number that Aaron will be able to budget for when he is able to work full time. And it is a policy that he can carry with him for a lifetime.

In December, Rick was laid off. We had been anticipating this ever since the buyout. We will be losing the group insurance and going on COBRA. If Aaron had still been on our plan, that would have been followed by looking for private insurance with a pre-existing condition. It would have been impossible. So as hard as it is to deal with unemployment in this economy, we are again praising God for orchestrating these events. His timing was perfect. He has provided in a way that we could not have imagined and it gives us confidence that He will continue to go before us.

The return to the empty nest.

After being away at college for nearly 4 years, Aaron was still struggling to figure out what direction to take for his career. He decided to sign up for the graphic arts program at Coleman University right here in San Diego. Part of this decision was to temporarily move back home. Aaron thrived at Coleman University and in July began looking for a full time job. As parents, we are always trying to push our children out of the nest. We want them to exercise their wings and learn to fly. But as we learned of Aaron's diagnosis, it was so evident to me that God's hand was at work, orchestrating the events, to bring him back home for such a time as this.

Cancer. It has raised it's ugly head in our family.

In October 2009, our son, Aaron, was diagnosed with a very rare cancer. It's called Alveolar Soft Part Sarcoma (ASPS). http://en.wikipedia.org/wiki/Alveolar_soft_part_sarcoma

The prayers, support and encouragement that we have received from family and friends has been unbelievable. But more than anything, I have seen God's hand at work from the VERY BEGINNING. Although there may be someone out there that may draw encouragement from these postings, I have to admit that my motives for writing are selfish. I want to constantly be able to look back and be reminded of God's faithfulness, so I decided to write down how He has been at work...guiding decisions when we didn't even suspect that such a thing would ever be a part of our life! I hope that in times ahead, it will help me to remain steadfast, always trusting Him, confident of His love.