Round 16 delayed

Christopher was scheduled for round 16 of Chemo this past week, however, on Friday he developed a really bad case of mouth sores that are caused by one of the Chemo drugs. It was very frustrating and painful as he was unable to eat or even swallow for that matter. He had a strep test just to be safe but sadly it was just side effects. On Tuesday rather than being admitted he was given IV antibiotics to help alleviate any infection that might be present.
In addition to that his blood counts had bottomed out to a level unsafe for Chemo so he was given a platelet transfusion and is on hold until the rest of his levels come up. Though it was nice to have a "week off", it was still quite a bit of back and forth at the Dr.'s office and just puts off the end of his protocol which is disappointing as he is so close.
Believe it or not he is feeling good considering all of this, tired, but better than he has been from being off chemo for a little bit.

Now for the good news! On Tuesday Christopher also had his first fitting of the new prosthesis!!
It is step one of a 3 part process. Next week he will have another fitting and actually try walking on his new leg and about 2 weeks after that he will have the real deal!! It was so exciting for him and the look on his face that day was priceless. This has been a long time coming but it seems he is finally approaching the finish line! Chris was also photographed for Nemour's Annual Report...he has become quite the poster child for the hospital and clinic. He also offered to visit a young adult who is currently at Mayo having the same surgery as Chris (lower leg amputation), as he felt he could use some encouragement.

I, as well as his Dr.'s and hospital staff couldn't be more proud of his positive attitude and perseverance despite the many setbacks. We are almost there...keep up the great work Christopher!!
Lots of love and appreciation to all, Patty

Wiped out by another round!

Having successfully completed round 15 of the more harsh chemo on Friday morning, Christopher takes a well deserved break with Jake!

The week went relatively smooth as far as chemo goes. He even saw the surgeon who put the screws in his hip and got the OK to move forward with the fitting of the prosthesis. He was "casted" on Tuesday, right before being admitted to Wolfson's and should have a trial leg in a week or so! It will only be a temporary fitting to make sure the measurements are correct, and about 2 weeks after that he will have a new leg! Finally!! He is so looking forward to the day he can ditch the crutches.
Today we went to the Jacksonville Jaguar's football game, compliments Defensive End, Quentin Groves. Along with the tickets came field passes so we had the privilege of getting up close and personal with the players. Many thanks to Quentin and his peeps for making this such a special and fun experience. And believe it or not the Jags won!
And it looks like they weren't the only ones to do some scoring... :p

This week Chris starts physical therapy to begin to strengthen his leg and work on balance.

If all goes well, i.e. we stay out of the fever zone, he will go to school as much as possible and only have to visit the clinic for blood work. He is doing very well, in great spirits and we are both looking forward to a week at home!

Keep the positive thoughts and prayers coming. 3 more rounds to go!!

With much love, Patty

A friendly visit!

Above is my dear friend Tammy and below she and Christopher pose for a picture at "Nonni and Papa's" . We made a special trip so Chris could indulge in all his favorite foods! Thanks Non!

The reason Chris was able to make this trip is he did not have Chemo this week as scheduled. After we saw his Oncologist on Tuesday for the pre-admission exam, he noticed several sores or ulcers on Chris' leg (left leg) that had gotten infected. What were they and how did they start? Who knows. But with his immune system being so compromised anything can turn into a disaster. He put him on antibiotics as the risk is the infection getting into his system and that would not be good. He is also on the Swine Flu medicine, an anti-viral med as a precaution as unfortunately he was exposed to it by none other than me! I was worried about him getting my "cold/flu" but never expected this. So far he has been OK, thank God!

On top of that he was plagued with mouth sores from the past 2 rounds of chemo which can be pretty painful. So that is why his Dr. made the call to wait. More chemo would do more harm than good. He will go back in on Tuesday.

He will also have a follow up appt. with the surgeon that put the screws in his hip to get the official go ahead to weight bare, and immediately following he will get casted for the prosthetic! Yeay!

On a very positive note. The reason for Tammy's visit (well in addition to being very supportive of us) was to hand deliver the money she collected at her fundraiser. This was such a blessing and wonderful gesture on her part as it allows me to continue to be financially able to survive another month off work which should bring us to near the end of Christopher's Chemo protocol.

It was a very difficult decision to take the FMLA, from a financial standpoint, but my boss and friend Annah was very confident that I needed to do this. She told me many times (as I panicked) to have faith and that all will be fine when I am able to focus on Christopher. And by the grace of God and efforts like Tammy's to help all IS working out...but definitely

not according to my plan!

I know that all is as it should be and for that I am grateful.

With much love and gratitude, Patty

p.s...a special thanks to Lt. Col. Ed Gedney for sending Chris some special gifts. It was very kind and Chris is also looking forward to a trip to the Special Forces Base here in Florida!

Back on the home front.

This is Christopher's favorite nurse, "Whitney". She is about to stick 2 needles in his chest and still they always manage to laugh. She is awesome we love her!

Christopher is seen here with Pro Jaguars player Quentin Groves.

He happened to visit the children's clinic during Chris' pre-chemo appointment on Tuesday so he had a chance to meet and chat with him. Later that evening they were on the main News Channel as Christopher and he were talking it up! (Seeing as he is so shy!)...he scored tickets to an upcoming Jag game, even after he mentioning we weren't big football fans and that we were a Patriot household because I was from New England and all! Chris has never been to a Pro football game so this will be exciting. Quentin was super sweet and very genuine. He mentioned how he admire the strength and determination of these young kids dealing with life threatening illnesses and that most of us adults could learn from it.

It was thankfully an uneventful week and Chris tolerated the treatment very well. We got home this morning and have until Tuesday before going back for round 15.

Chris also saw the Prosthetist and was given a "stump shrinker" to wear for 2 weeks and then he will have a cast made and FINALLY should have the Prosthesis about a week or so after that.

He is glad to be home, though I came down with a bad case of the flu and was quarantined from his room the last couple days and have to wear a mask in the house. Please say a prayer or two that I am not contagious. I am on the swine flu medication and Chris will need to take it as well as a precaution.

I want to thank and wish much luck to Tammy and friends at TAP lighting as they prepare for the big fundraiser tomorrow in San Diego! A lot of work has gone into this event and I am very grateful! We will keep you posted on it's success!

With much love and appreciation to all, Patty