today's appointment with dr. claire

Hi everyone! (this update is coming to you from April)

We thought it might be easier if I update on the appointment today, because there was a lot of information exchanged, and some questions and decisions still left unanswered.

I am going to try and be as comprehensive as possible... but overall, there have been some changes we want to make sure you are all aware of!

The things we know:

The tumor

Most of you already understand this, but I didn't until this past week.  Jack's original tumor (Marvin) was a considered a Stage 1/ Stage 2 Astrocytoma (I could give you the specific name, but for simplification sake, I will just leave vague).  The biggest difference between Marvin & this new tumor that appears to be attached to Marvin, is that the new tumor is growing much more aggressively, and acts as though it has moved to a Stage 3 or Stage 4 Astrocytoma.  For the past 6 years, Jack has been considered a Cancer patient, but it isn't until this rapid growth that we are talking now about a new stage of Cancer. 

However, the MRI's aren't good enough for them to say one way or the other for sure.  It isn't uncommon that a Stage 1 or Stage 2 Astrocytoma will all of a sudden grow rapidly in a different area. The doctor's can NOT be sure without taking a biopsy of the tumor cells. Which is why...

Biopsy is back on the table

Last week when Dr. Claire first spoke with our neurosurgeon (Dr. Boydston), there was an initial evaluation that the biopsy wasn't the best option.  Since then, Dr. Claire has talked with several other pediatric oncologists and believes that moving forward with the biopsy, as long as it's SAFE & there is LITTLE TO NO RISK for Jack, is going to really help the doctor's determine the best protocol moving forward.  

Dr. Claire is hoping to talk to him today or tomorrow, and then present Jack's case as part of the department's meeting on Wednesday at noon (the meeting involves all the pediatric oncologists, neurosurgeons, and radiologists of the hospital).  It will be Wednesday afternoon after this meeting that Dr. Claire said we should hear definitively on the biopsy (and if not, what the next steps will be for treatment).  Ideally, the biopsy would happen as soon as there was room in the OR.  For treatment, things have also changed a little bit.  What we know now is that...

Radiation is definite
REGARDLESS of the biopsy, radiation will now be the first step in Jack's treatment process.  Dr. Claire assured us all that they will look at all options of radiation therapy (normal radiation vs. proton radiation), and they will present to us what they feel is best, even if it can't be done in Atlanta.  She went through the main differences between proton & normal radiation, and assured us that both have their benefits and drawbacks, and it will really be left up to the radiation specialists to recommend one over the other.

Right now, Dr. Claire is assuming they will recommend 6 weeks of radiation, and that they would radiate both his brain and his spine (even though there are no signs of Cancer in his spine, this would be preventative).

If they are able to biopsy, Jack will need 7-10 days to heal before the radiation treatments begin. But what about chemo, you ask?...

Chemotherapy is still likely
Dr. Claire went through a few of the chemo treatments they are considering, and it sounded like the side affects wouldn't be as harsh as Jack experienced last time.  Possible but unlikely hair-loss, less nausea, and less likelihood of low platelet counts/ skipped treatment.

Chemo is a little different than radiation after a biopsy, and they wouldn't be able to start this until 2-4 weeks after his surgery, depending on the specific medicine.  There is a possibility that radiation and chemo would be taking place at the same time for a few weeks. So, the question still remains...

What happens next?
We will hear more on Wednesday afternoon/ evening, and will update then.  We will either need to prepare for a biopsy, which will be scary, although will provide the doctors with definitive results & the ability to determine the best treatment.  OR, the doctor's will decide against the biopsy, and will move forward treating Jack as though this new tumor is a Stage 4 Astrocytoma, starting with radiation treatment and most likely combining with chemotherapy.

What you can do?
All we ask is for continued prayers.  Jack is continuing to experience challenges with his vision and walking, although he is becoming quite the rockstar on his walker and wheeling himself in his chair.

Please pray that he remains focused on God first, and that the support and love surrounding him (from all of you!) would ease any pain and frustration he is experiencing.

Please pray for Mary and Dad, that they may continue to have hope, and be positive, and that as they move forward with decisions, they have trust in God, in one another, and in the team of doctors working to get Jack better.

Please pray that Charlie remains patient & understanding, that Tiffany feels at peace even though she isn't here (and that she travels here safely to be here this weekend!), and that I can continue to find a place where I can make the biggest impact for the family during this time.

We love you all, and thank you so much for everything.
XO
april & the entire gardner family