An attempt to break it down simply....

Hi dear friends & family,


Whew, what a day. And we aren't even the ones who got poked and scanned and had to wait till 2pm to eat. :)  


One thing was confirmed today in case any of us had any doubt... 
Jack is a rockstar. Jack is a major trouper. Jack makes an impression on EVERYONE he meets.


Now, moving on to details about today...


The meeting with Dr. Natia (the radiation doc) went great.  She spent about 2 hours with us all, answering all of our questions, explaining things very thoroughly, and making sure we were all comfortable with next steps. She showed us the difference in the MRI from 2 weeks ago, and the one from Sunday.  With the obvious change in size (caused from both bleeding around the tumor and the tumor spreading), they want to begin treatments to both the brain and the spine as soon as we were ready.  Great news is that we are all ready to start something, and agreed that a biopsy would prolong treatment more than any of us are comfortable with.


Dr. Natia helped us understand the benefits of proton radiation vs. photon radiation, and expressed that because of the location of Jack's tumors (mid-brain), the only real difference in proton & photon would be in his spinal area.  She is going to set up a call for Mary to speak with a proton radiation specialist to hear more about it.  However, with the information we learned today, and recognizing the benefit to keeping Jack at home surrounded by friends and family, we are leaning more toward doing the treatments at Emory.


To be proactive and save us a trip, they went ahead and fit Jack for his radiation 'mask' today and set an appointment for the first treatment on Wednesday.  We are still anxious to speak with the pediatric oncologist from Johns Hopkins, but are feeling great about starting Jack's treatment on Wed.


Overall, we all really liked Dr. Natia.  She was very hopeful and genuine, yet very realistic and honest.  Some of the things she shared were:


The road ahead of Jack is going to be tough.  The radiation they are putting him on is going to be fairly intense, and may seem as though in the first few weeks that it's doing more harm than good.  His headaches will most likely continue, his throat may become sore, he will probably lose his hair, parts of his body may become weak or numb, and his skin will become red and itchy (almost like sunburn) where the radiation beams hit.


He will go for radiation treatments 5 days a week, for 6 weeks.  Every Wednesday, both Dr. Claire and Dr. Natia will run their diagnostic tests on Jack to ensure that he is still strong and reactive. They will be working as a team throughout the treatment cycle. They don't typically do MRI's or CT scans during the course of treatment, as radiation can cause some inflamation and result in unclear scans during the cycle. So, the next time we will be able to compare scans will be after treatment is finished.


What's the plan for chemo?
There is no decision yet on the type of chemo treatment they want to pair with the radiation, but it will most likely start shortly after radiation. We are expecting to hear from Dr. Claire on this more tomorrow.


And then there is his liver...
Like I mentioned yesterday, the enzymes in Jack's liver were registering pretty high in both his Saturday and Sunday labs.  They did an Ultrasound on that area today, and it came back that there is some fluid surrounding his liver, possibly caused by his steroids.  They have scheduled a CT scan for tomorrow to help them see exactly what's going on, and then will make adjustments to his medicine as necessary.


We can only hope this is what is causing Jack's intense stomach pains lately.


Please continue to pray like crazy that Jack's pain becomes non-existent & that he remains strong (both in his faith and physically), and that the rest of us embrace God and his plan in all of this.  


We remain hopeful that Jack will set new records with the treatments we are doing & and be the subject of new stories for these doctors to tell. (And we all know that he has already provided many great stories of laughter for these doctors...)


XO
April (and the gardner fam)