Update on Aaron - 12/27

We had a nice Christmas and Aaron was even able to attend our church's Christmas Eve service!  Ben had a great time once he realized what was under all that wrapping paper! He couldn't wait to hand out a gift and then help them open it, especially his baby cousin, Grace!

There is nothing better than Christmas dinner eaten at your new table...actually, eating dessert is better.

Unfortunately, we had to head in to the ER yesterday morning due to Aaron having abdominal pain, vomiting, and lack of bowel sounds, which is indicative of an obstruction. As you may remember, Aaron had a blockage in his small intestine in August that was relieved by an NG tube suction (the other option was surgery). Yesterday was when Pittsburgh got hit with blizzard conditions and we were instructed to go the nearest hospital rather than Shadyside, where he typically receives care. They confirmed by CT scan that Aaron has a partial or minimal obstruction in what seems to be the same location as in August. Yesterday evening he was transferred to Shadyside hospital and
an NG tube with suction was placed. It has relieved quite a bit of the abdominal pain and nausea.

The GI doctor we met this morning mentioned the possibility of placing a stent in the narrowed area of his digestive tract. However, there is some concern that it is narrowed in another location as well. If that is the case, a stent would not be of much benefit. Another option is bypass surgery where they would reroute his digestive tract to skip over the narrowed area(s) (per my understanding of what the doctor said). Unfortunately, whether or not Aaron is strong enough to go through surgery is in question. The doctor will consult with radiology to get a better understanding of the ct scan and talk with us later today.

Please pray that the NG tube will be enough to resolve this obstruction and that if a stent would beneficial, it will be able to be placed without complication.

Please praise The Lord with us that Jenny's family was planning to stay in Pittsburgh due to bad weather and were in the area to care for Ben and be with them at the hospital.

Please pray for wisdom for the doctors and for Aaron and me in determining the best course of action and care for him.

Praise God that we live so close to medical facilities and that the doctors here are familiar with Aaron and his medical history.

Please continue to pray for pain management and rest.

Please also keep Benjamin in your prayers as this is yet another time of instability and absent parents.

Please keep our families in your prayers as we have hit another obstacle.

I also ask you to keep me in your prayers. It is a great struggle to have my husband in the hospital and my son at home. I ask that you pray for wisdom that i would know how to help Aaron and be his
advocate.

After much searching, I found this little guy to do our cooking and baking for Christmas!

Thank you for your thoughts, prayers, and love as we face this next trial.

Love,
Jenny

We are home!

Hi Family and Friends,

I want to thank all of you for your fervent prayers for Aaron and our families.  Aaron was discharged on Tuesday (12/18) evening from the hospital with his pain controlled and without any disorientation! It has taken me a little while to get an e-mail out with everything going on so I apologize for the delay in update.

He is grateful to be home and able to sit in his comfy recliner.  Aaron came home with a PCA pump. It administers pain medication each time he pushes a button, giving his medication through a PICC line (long IV) located in his upper left arm. He also receives IV hydration through the same PICC line 3 times a week. Getting fluids has proved to be a great benefit to Aaron throughout this process so I am glad he will be receiving them often. I have begun my unofficial training nurse training as I am in charge of changing IV tubing, reloading medication, setting up his hydration, and doing problem solving (has not been needed...yet)! This is all done under the teaching and guidance of the real home nurses who come 3 times a week.

Unfortunately, Benjamin caught the stomach virus that has been going around but Aaron was in the hospital while he was contagious and Aaron has permanent pass on diaper duty. Interesting how that lined up with Ben's little body ridding the virus out through his diaper...hmmm.

Aaron's parents and Jenny's mom and step-dad were able to hurry out to Pittsburgh when Aaron was admitted to be with him in the hospital and help with Ben so I could be there as well. After he was discharged, we were able to celebrate Christmas with his parents, Jenny's mom, step-dad, brother, sister-in-law, and sweet little niece will be arriving this weekend and Jenny's dad, step-mom, sister, and brother for New Year! We are so grateful to still be able to celebrate the joy of the season, the birth of our Savior, Jesus Christ, who has conquered death and through faith in Him, grants eternal life.

Merry Christmas!

Love,
Jenny

Aaron update - Dec 15

Dear Family and Friends,

I am not really sure how to begin as it is written with a lot of tears and heartbreak.

As you remember, we found out on December 4th that the chemotherapy was not effective in controlling and treating Aaron's cancer. We had planned to begin a new medication called Votrient in the hopes that it would control the grow of the tumor at least for a few months, if not more, and head down to Houston, TX for a consult at MD Anderson.

This week has changed our plans. On Thursday (12/6), we met with his pain management doctor to discuss adjusting his pain regiment since he was having significant and frequent breakthrough pain. Aaron wears a pain patch to provide constant relief and has medication to take when the pain "breaks through" the patch. When he is taking a lot of breakthrough medication, that signals to them that the patch is not sufficient for pain control and needs to be adjusted. On Tuesday (12/11), Aaron was experiencing excruciating pain and was given the go ahead to increase all of his pain medication in hopes of getting the pain under control. When his pain really bad, he is unable to eat, sleep and finds it difficult to even drink water. Fortunately, he slept well that night but was very confused and disoriented on Wednesday morning and throughout the entire day. He slept most of the day. On Thursday morning we had to go in for a blood test and he was still very disoriented and confused. He had a difficult time differentiating between dream state and reality.His oncologist and his team were able to see him quickly and determined that he had not had a stroke, his heart rhythm was good, and his cognitive state was likely due to the sudden increase in his medication. They started him on fluids, admitted him to Shadyside hospital, and by the evening he was more alert and lucid. He is still in the hospital and will remain there until they are able to get his pain under control with him being alert. We are hoping he will come home on Monday.

While in the hospital, Dr. Tawbi was very honest with us about how upset and surprised he was about Aaron's rapid decline. Aaron has lost 10+ pounds since last Tuesday and is now too weak to begin the anti-cancer medication, Votrient, because it would likely do more harm. We also had to face the reality that a trip to TX would be too much on Aaron right now. There is still a possibility that if Aaron gains strength he would be able to begin the Votrient but that does not seem very likely at this point. With great sorrow and a broken heart, my darling and I have had to begin thinking about assistance at home and what equipment and support we may need, are we prepared legally if things continue to worsen, and it is awful.

We are not without hope. Aaron was given a 5% chance of survival when he was 8 and just in September, we celebrated his 30th birthday. He was told he may not be able to have biological children and Ben will be 2 in January. Man only knows so much but our Lord, who grants peace that surpasses all understanding, knows all things and is over all things, including this. It is He who comforts Aaron and gives him peace. It is He who grants me the grace and ability to write this e-mail to inform you and plead for your prayers of healing, your prayers of strength, your prayers of mercy.

We have not lost hope because our God is infinitely greater than cancer, He has already conquered death through Christ, and is able to accomplish infinitely more than we can imagine. We pray that His will be done and that He grant us the grace, trust, and peace to follow His calling wrapped in His loving arms

Love,
Jenny

Aaron update - Dec. 4th CT appt

Dear Family and Friends,

Unfortunately, the scan showed that the Doxil chemotherapy treatment is no longer working. The CT scan showed that Aaron's cancer is growing.

Aaron has been struggling with fatigue and pain. Dr. Tawbi said both of these can be attributed to the tumor and the fact that it is growing. The cancer is trying to survive and grow in Aaron's body so it is stealing his nutrients and energy, leading to fatigue. It is pushing on nerves and likely growing off them, which lead to pain.

A patient diagnosed with sarcoma (any type) from diagnoses survives on average 18 months. Aaron has blown this out of the water as he survived 20 years after his first diagnosis! However, the recurrence we have been battling for the past 18 months is an aggressive cancer. Dr. Tawbi told us to "plan for 3 months to one year." I am not sure if that is his way of telling us to enjoy the present and plan for the future one step at a time or if that is how long, medically speaking, you know.

Due to the location of his tumor, chemical therapies are still our only option for treatment. Aaron asked about removing a lung and/or his chest wall. We were told that because of how quickly the cancer grows, the 4-6 weeks of recovery after surgery could put him in great danger as any cancer cells left would have free reign without anything fighting against it. He also expressed how unlikely it would be to removed every single cancer cell from Aaron's body.

So, what to we do other than cry out to God for strength, mercy, and a miracle and cry?

Aaron will be starting on a medication that has recently been approved to treat sarcoma. Pazopanib (Votrient), is for patients with renal cell carcinoma and has been found to prohibit growth of sarcoma tumors. It is an oral medication that Aaron will take every day hopefully starting early next week. In 10% of patients tumor shrinkage has been seen and this medication offers tumor control for an average of 4 month. We found out that there is one gentleman at the Hillman Cancer Center who has been on this medication for a year so it offers some hope! After Votrient is no longer effective, there are some other possible options we discussed but we will cross that bridge when we need.

The pain management team has been helpful in assisting in getting Aaron's pain under control. They have increased his pain patch dose as well as his breakthrough oral pain medication and we will meet with them again tomorrow. Radiation is also an option for pain management but not for treatment. We will be scheduled for a consult with the radiology oncology team to discuss this as an option.

We discussed getting a second opinion and Dr. Tawbi was humble and encouraged us to pursue a consult at M.D. Anderson in Houston, TX. Aaron filled out the form online and we should be hearing in the next day or so. We are not anticipating receiving a different prognoses but possibly more options in treatment and management.

As you may imagine, we feel like we've been run over by a truck who backed up over us and ran over us again. Deep down, we knew this was a possible outcome but we were not expecting this news only 2 months after celebrating Aaron's 30th birthday, looking forward to Christmas, and Ben's second birthday.

We really need your prayers right now, especially for peace, comfort, emotional strength, clarity of mind to ensure we are asking the right questions and seeking every option and avenue. We ask that you continue to pray for healing. Jesus Christ raise Lazarus from the dead.  God convert the apostle Paul from a murderer to one of His witnesses. All things are possible for God, nothing is too small or too big. In the same light, we ask that you pray that we would not live in denial but that we would be able to have the conversations necessary, make the appropriate preparations while Aaron is feeling decent, and appreciate, enjoy, and cherish every moment as a family. As much as I ask for prayer for Aaron, Benjamin, and myself, please remember our parents, siblings, grandparents, and other family members in your prayers.

I really wish I didn't have to write this e-mail to you all.  I wish so badly that I was yelling in all capital letters about how the chemo is working and the tumor is shrinking but that is not God's plan, that is not reality. Instead, I humbly ask you to continue to lift us up in prayer as this news sets and the shock wears off over the next few days.

Love,
Jenny

Pumpkins and turkeys

It's fall! It's fall! It's fall!

Football!

Fall is Aaron and my favorite time of year.  We are done sweating, we get to bundle up in jeans, and admire God's beautiful colors.  Oh, let's not forget the flavor of fall - pumpkin, chili, and apples!  Yum!

Despite the dreary weather, we headed out to the farm in search for fresh cider, donuts, and a pumpkin!

My little toddler nose is superb at sniffing out tasty treats.

Fresh donuts - yum!  Cider mills are hard to find within a reasonable drive from Pittsburgh, which makes our Michigan hearts sad but we found a farm north of town that does make their own cider and Amish donuts!  We went with the glazed version and it was delicious.

"Bite! Bite! Bite!"

The farm also sold beautiful Amish handcrafted furniture.  Benjamin was a huge fan of the little man sized rocker.  We also found a little potty chair that we had to resist purchasing!  So cute!

This is my "I don't want my picture taken" pose.

The most beautiful potty I've seen. That is all.

We played outside in their play area and met one of the farmers: Farmer Ben!

Love!

Give me a boost, Daddy!  The train is getting away!

Aaron and I decided to get a pumpkin for the first time in our entire 5 year marriage! We were so excited to watch Ben roll and touch and play with the pumpkin.  Then, reality hit and we remembered that he is going through a phase of being scared of everything...including pumpkins.

Found the perfect little pumpkin.

Run away! Run away!

Some visitors came by our townhouse...in the city...with no grass.  What a bunch of turkeys (haha. knee slap!).

Too bad it's not closer to Thanksgiving...

Take note of the ready-to-pounce neighborhood cat. Apparently he was not doing his job well enough.

Happy fall!

Friday Fun Day!

  Today is Friday Fun Day!

Last Friday was great playing with empty milk cartons. Yup, it's the little things...

Family hand wreath was our project last Friday. He lasted through tracing his hand then see a

It was touch and go until about 7:20 am since Benjamin decided 5:30 was a great time to wake up as a crabby, grumpy, teething little guy and Mamma was recovering from last night's "I'll just do a couple more things...oh look it's 11:30 and I'm still awake" foolishness.  Once we snuggled and allowed ourselves to wake up a bit, we had a delicious breakfast and were off and running with our fun day.

#1. Read tons of books!  Benjamin's current favorite is One Fish, Two Fish, Three, Four, Five Fish.  Current endurance record for Mamma is reading the book 4 times in a row.

#2. So, what is the best thing to do with your 21 months old at 9 am?  Bake cookies for the couple coming over while Aaron and I go on a date night!  Benjamin was a great helper (and taster!).

Dish towel + chip clip = apron. He was ready for mixing!

Mamma said I have to wait a few years before I can eat the dough. She seemed to enjoy it though.

COOKIE STON-STAR!

#3. Make homemade crock pot applesauce.  So easy and so yummy!

#4. Lots of coloring.  Benjamin is really in to coloring...or dumping out all of the coloring supplies and waving them around yelling "Wee-Oh-Wee-Oh-Wee-Oh!".  His favorite color seems to be red and it is constantly the answer when asked "Benjamin, what color is this?"

Colored pencils, crayons, coloring book! Oh my!

#5. Goodwill drop!  We took 4 boxes to donate this morning.  Aaron was jumping for joy pleased to have those boxes out of our room so we can actually walk across the room.

This afternoon entails a stroller run/walk in the beautiful sunshine, homemade quiche for dinner (one of Aaron's favorites), and ends with a date night for appetizer and dessert at the Cheesecake Factory!


Definitely a fun Friday!

Mamma did what!?

Daddy, we've finally done it. We've driven Mamma to the edge!

From mid-July to early September, I have been training for my first half-marathon. I know, crazy!

Say what? Yeah, that is crazy!

After the PCS 5K in July, a friend asked me to think about running the Montour Trail half-marathon, known to be a great first half-marathon course.  Aaron encouraged me to do it and I started training on Monday and ran again on Tuesday.  Tuesday was July 17th, the day we saw the unexpected PET CT results that Aaron's cancer was back only 6 weeks after surgery.  Tuesday evening, during a quiet discussion trying to make sense of everything, Aaron asked me if I was going to continue to train.


"Uh, what?  We just found out the cancer is back...in your chest...where they told us they got everything only 6 weeks ago."  How could I even think about training?  Yet, he told me this is exactly why I should keep training.  The stress is only going to increase and I would need something, a break, a goal, every day to focus on something other than the C word.

Mamma is about to run...without being chased!

So, I continued training and ran my first half-marathon on Saturday, September 8, 2012!  I ran 13.1 miles in 2:07:34, which is about 9:44/mile!

Red arrow = me starting my watch as I cross the start line

I was so excited that Aaron was having a good day and able to cheer me on!  Benjamin came to see his crazy Mamma, too.  Our good friends, Paul and Diane joined my guys.

We are going to eat donuts while watching people run? I'm there! Oh the irony!

Keep going! Only 4 more miles left!

All was going well with a slight drizzle until my last 1/2 mile when the skies opened up.  I pretty much swam across the finish line.

The cold rain felt so good!

How did I celebrate accomplishing this goal?  I took a 45 minute shower (I couldn't move any faster) and passed out napped for an hour and a half.  Oh, and let's not forget the Chick-Fil-A cookies and cream shake for dessert!

This is Jenny high on running. This is Benjamin photo-bombing.

Aaron and other family and friends have asked if I would run another and I think it is inevitable! Perhaps Benjamin will be joining me some day.

I might get a medal of my own some day but for now, I'll wear Mamma's.