The Lion Fights: Unfortunate News

As the title of this blog post indicates, we did not get the news we had been hoping for leading up to the MRI. The imaging revealed 3-4 "nodules" popping up within Ari's original tumor bed. The rest of this brain and spine looked to be cancer-free. That is a good thing. They will be running tests on his cerebrospinal fluid over the next couple of days to test for any cancerous cells floating around. So, where does this leave us? Twenty-four hours ago, I would have told you that we did not have any further options with this type of cancer. We were mourning the loss of so much progress and lack of cancer. We were trying to wrap our minds around this fact that they again think he has cancerous masses in his brain. We had to revisit that same day when we met with Dr. Romanoski (our wonderful pediatrician) in the PACU after his initial MRI at Riverbend Hospital when she informed us that he had a brain tumor. Now, some things are different. The "nodules" are very small, about 3-4 mm in diameter (his original tumor was more than 3 cm in diameter). This is good. The "nodules" are in the same tumor bed as the previous, which means that our amazing neurosurgeon believes she can get to them and get them out. At this point, it appears that the recurrence is localized to the original tumor area. This is good for many reasons. The obvious one is that it appears the cancer has not spread. Secondly, it is good for further treatment options.

This leads me to my next piece of information. The chemotherapy was doing a decent job of keeping the cancer away, but didn't quite get the job done. As I've stated before, radiation is almost always a part of treatment protocols for Ari's type of cancer; however, it was omitted for him due to how young he was at diagnosis. Although he is still young, they feel it is the next step in the treatment of this cancer. We had the chance to meet with the radiation oncologist this morning about treatment options. We knew going into the meeting that there were really two main options, proton-beam and photon radiation. What that actually means, I do not know! What we do know is that proton-beam radiation, in theory, is supposed to minimize effects on surrounding healthy tissue within Ari's brain. Now, I say "in theory" because it is still a fairly recent discovery for cancer treatment. Photon radiation would be more considered the "traditional" form of radiation. So, our meeting with Dr. Marquez went well, and she recommended that we do proton-beam radiation therapy to help minimize adverse side effects. The one problem is that the proton center they suggested is in Houston, TX. The second problem is that we found out Ari's insurance does not cover out of state medical expenses unless deemed medically necessary. Now, you and I know that this is medically necessary, but an insurance company will need some convincing. Our team of doctors will be writing letters to advocate on his behalf for the treatment to be covered. After that treatment, we will more than likely return to Oregon to continue chemotherapy.

So, you now have all the information. We decided to wait until now to inform everyone reading the blog because we were still gathering information from the oncology team about treatment options. To say that we are not saddened by this circumstance would be a lie, but we know that God continues to carry us through this season. We still lean heavily on the verse in Philippians that states, "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God." So, we petition and we pray for healing. We say thank You, God, for continuing to grant us strength and grace through this process. We say thank You for bringing smiles to our son's face and helping him to continue to heal and be more interactive. We say thank You for this team of physicians and nurses who are willing to sing "The Wheels on the Bus" for 10 minutes with our son to help him calm during procedures. We thank You for a neurosurgeon who found out about our imaging ON HER VACATION and requested to review the images to develop a plan for our son. We thank You for community. We thank You for a church that continues to pray and be connected to us through this season. We thank You for family that consistently asks what they can be doing from afar to help ease the burden. We thank You for friends who stay at our apartment all day while we're in the hospital just to receive Ari's shot coming through UPS, and then decide to do our laundry while they wait. We thank You for You and for offering us hope that is eternal and not founded on tangible or circumstantial details. Please petition with us. Here are the things we ask:

1. That we would continue to be fully reliant on God and He is leading us in making decisions for Ari.

2. That Ari's CSF would be clear of any cancerous cells.

3. That Ari's neurosurgeon would be able to remove the nodules safely.

4. That Ari would heal from surgery with no complications or seizures.

5. That Ari's insurance company would understand the necessity to approve a treatment that minimizes any long-term effects on his neurocognitive development.

6. That Ari would learn new developmental skills amidst treatment and surgery.

7. That Ari would be healed from this awful disease.

Now for some fun pictures!