First Day of Healing!

We arrived in Jacksonville safely yesterday afternoon.  It is so nice to all be together as a family. Our original plan was for Tucker and I to come down however after learning Tucker's tumor is indeed returning rapidly we are leaving our finances up to God and are staying together as a family. We are staying at the Ronald McDonald House.  We do not have TV ha! :) BUT they have a nice play area for Tucker and a play set outside. They also have 2 fish tanks and a children's library. We are hoping Tucker will make some friends to play with.

Saturday was an AMAZING day. The "Taking Time for Tucker" benefit was a huge success and a lot of fun. It moved us to tears to see the community come together to support our family.  We appreciate everyone who came out, donated and worked so hard to make the event happen.  It is such a peaceful feeling to know we can concentrate fully on Tucker's healing due to the generosity of others. We will be forever grateful.  Our family is blessed beyond measure to have so many people who truly care about what we are going through.  We do not take it for granted.

Today was Tucker's first day of radiation treatment.  Before his treatment we discussed the radiologist's plan.  We looked at images and he explained what the next 6 weeks would entail.  Basically, they are being as aggressive as they feel his spinal cord can handle.  Even though paralysis is still a big concern it is inevitable without treatment.  We are praying that his spinal cord will be able to handle the treatments without permanent damage.  For most of his treatment it will be a wides spread area of the tumor site and area around it hoping to kill all microscopic cancer cells.  For the last 2 days they will be putting all of the radiation in the specific area of the tumor "giving it 2 extra punches." His radiologist feels we have a great plan in place to give him the best chance especially since we are combining it with chemo.  We have his first oncology appointment on Thursday afternoon.  Tucker did well with his treatment today and we are back at "home" playing. He only whimpered while he got accessed from being scared but the needle itself did not hurt because they numbed him with cream really good first. He did really good. He played with the proton center's Ipad while they wheeled him back and before he knew it he was fast asleep.  We will do this everyday so I'm sure after a few days it becomes routine and will get easier in time. 

Thank you for your continued prayers! We met a family today at the Proton Center from the UK. Florida seems far away from home but we are so grateful that we are not having to travel to another country.  So thankful for our many blessings.

"Let us lay aside every weight and the sin that so easily ensnares us, and run with endurance the race that lies before us, keeping our eyes on Jesus the source and perfecter of our faith."    Hebrews 12: 1-2

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!!

Haircut

Tucker got his hair cut today. It might be his last one for awhile so we made a big deal about it. Not all children loose their hair during treatment but it is more likely than not.  Tucker loves his new cut and we do too!

Initial Jacksonville Visit

We finally have a date to go down to Jacksonville for Tucker's initial appointment.  He was approved by the Proton Center AND our insurance company so we have a green light to proceed. YAY.  We will be traveling next Thursday night because his appointments start early Friday morning.  We will meet his radiologist and nurse that will be working with Tucker when we come back for his treatment.  They will also be doing an MRI and CT Scan to help plan his radiation.  They will put him to sleep for both of these procedures through his port so at least no IVs this time.  This appointment is just to prepare for his treatment and get the measurements and information they need to give him the best personalized care possible.  We will return on Sunday and work until they call us to come back down for the 6 weeks.  They anticipate there being about a 2 week time frame in between when we go down next weekend and them being ready for us to come stay for the long haul.  We are so thankful this process if finally moving forward.

Life Ain't Always Beautiful, But its a Beautiful Ride

I have always loved that song by Gary Allen. It has never really struck such a personal chord with me like it does now. There is nothing beautiful about cancer. There is nothing beautiful about hearing the words that your own child has cancer. The paralyzing fear, the uneasiness of not knowing what the future holds and the ache in your heart because you want nothing to disrupt their happy carefree childhood...none of these are beautiful.  However, all those feelings are masked when I hear Tucker's little feet running to give me a hug with a smile that lights up any room. The past 2 years have been the best of our life and not because everything is perfect. The past 2 years have been beautiful because we are blessed with all the great things that come with parenthood, being a family and instantly learning to love till your heart aches.  Over the past few weeks we have had our lives turned upside down. But in all that mess here is what we have learned: Our friends and family will do ANYTHING for us and they have proven it. God will not leave us nor forsake us and he has proven that by all of the miracles he has already given us in Tucker's recovery from surgery and providing for our family financially. We have learned we are stronger than we ever thought possible. We have learned that our son is touching the lives of many people from miles around through his courage and sweet spirit...now that is BEAUTIFUL. Everyday we are praying for Tucker's complete healing that we know God can provide, but in the meantime we are ready for the bittersweet, beautiful ride.