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