got proton?

We arrived in Jacksonville last night around 11:30.  We made it in 6 hours, not bad at all.  From 10-3:30 today we were at the Proton Center.  Our appointment started with insurance information. My chin hit the floor when she handed me a detailed bill for his proton therapy.  Just for the radiation (not chemo, not anesthesia, not supplies JUST the radiation) the total bill was $121, 000.  Thank God for insurance!! Our out of pocket expense will be minimal compared to that. What a blessing. Our next stop was meeting his radiologist. He went over the risks of  radiating the spinal cord and benefits of proton radiation.

Possible Long Term Side Effects: Nerve damage to the spinal cord (which would cause numbness, paralysis, pain etc in his trunk or legs.)  damage to his growth platelets ( this is most definitely going to happen with tucker...he will be a few inches shorter than he normally would have grown) 2nd type of cancer from the radiation such as skin cancer or another tumor in the area they radiated made up of a different kind of tissue, bowel or bladder trouble or erectile dysfunction.  Most of these he says the risk of having these effects is about 15% and they show up years after treatment.  He said Tucker will probably never grow back hair in the area they radiate and the skin they radiate will probably look different in color than the rest of his back, those are cosmetic and are not worrisome to us.

Benefits of Proton Radiation: The beam is more accurate in treating only the needed area and does not exit the body harming organs as it exits. It hits the tumor area and stops which is crucial for Tucker because of where his tumor is. This will save his kidneys, the lower half of his lungs, liver and intestines from getting significant damage.  The radiologist feels that if Tucker sees long term side effects it will be from spine and spinal cord injury due to where they are having to radiate. So although the risks are scary they out-way not radiating which would mean the tumor returning and taking Tucker's life.  Since radiating is not an option proton radiation is the best choice for him.

Before they took Tucker back from his CT Scan I asked the radiologist how successful he felt we were gonna be with keeping this tumor from returning. He said that if it were a grade 4 and the surgeon hadn't been able to remove the entire tumor he would say it is unlikely that treatment would be successful.  He said since Tucker's is grade 3 and the Dr. Troup got all of the tumor he feels the success rate will be about 50/50.  We were really wanting to hear a higher number.  That was hard to hear.  However he said that if this treatment is successful he felt that Tucker would lead a pretty normal long life.  Even though we were disheartened by numbers today we know that God can beat all odds and statistics do not mean anything to Him. We find comfort in that.

He got some INK today!! They had to tattoo little dots on him to use during his treatment for accuracy. They are small and really unnoticeable.  They did it while he was asleep for his ct scan. The scan went well. After we had the long talk with the radiologist about how great it was that we were starting treatment with no tumor just cancer cells we were shocked with he came to us in the waiting room and said Tucker's newest MRI results came in and he was concerned.  The person who read the MRI wrote "possible tumor regrowth is visible."  The radiologist said that if he indeed already has tumor regrowth that would significantly lower is success rate.  This hit us like a ton of bricks. However, the spot could be scar tissue or a sac of fluid so we have to wait to see what his team thinks in Greenville.  Dr. Troup his neurosurgeon and his oncologist will review the images along with the radiologist in Jacksonville and give us their opinions.  It will not change the course of treatment if they feel the tumor is indeed already returning it just puts his chance of success with this treatment in a more concerning state.  The radiologist said it definitely is not what we wanted to hear, however we are trying to remain positive that it is indeed just fluid or scar tissue.  He did have a spot before his surgery above his tumor and the surgeon said it was fluid caused by the tumor so we will see what he thinks now.

After he woke up from anesthesia we grabbed some lunch and rested in our hotel for a bit.  Tonight we took Tucker for a ferry ride along the St. John's River and he loved the water. Our hotel is on the river and an easy walk.  Tyler grew  up here and is a huge Jaguars fan so it was neat to see the stadium and everyone in their Jaguar attire for the first home pre-season game tonight.  The players and coaches stayed in our hotel last night so we saw a few of them walking around this afternoon.  We are watching the game on TV as I type as a matter of fact. :)

Things to Pray about: That Tucker's treatment WILL be successful and that his long term effects will be minimal.

Things to feel good about:  Tucker has a great team of doctors that are making decisions based on his best interest.  Our social worker in FL is working hard to pull things together for us when we return so that Tucker will have fun weekends going fun places.  A HUGE hooray for good health insurance!!

Tucker is loving life and is so brave. We wish we could take this from him more than anything in this world. But, since we can't... we pray, try to focus on the positive, we lean on good friends and family and we continue to look to God for all of our decisions and comforting our fears and doubts.  He is capable of doing more than we can ever dream or imagine!!