Houston we have a Leg!!

FINALLY!! After nearly 6 months of being without his lower right leg, on Tuesday Chris left the Orthopedic Dept. at Nemours with his prosthesis! Not too excited as you can see from the picture!
It was quite the Thanksgiving gift for him as well as I. It has been such a long and arduous journey at times and to see him literally able to put one foot in front of the other was definitely a moment. He is still bound to crutches for support until he learns to walk again with his new leg. Hopefully soon he will be down to one crutch and/or a cane. By the way he adjusted on his first few steps I have a feeling it will not be long. Once he is comfortable with this leg he will most likely move on to a more functional prosthesis that he can use to swim, run or even snowboard in when he is ready. Though his Oncologist would like to see him stay a bit more sedentary until his bones are strong again.
So for me this Thanksgiving was truly a time to give thanks. Considering the odds and what he has been through, every day that Christopher is still with us and is a gift, not to mention the fact that he has maintained a strength and courage I never could have imagined. Being surrounded by so much love, encouragement and support from family and friends has made a big difference as well and I am so grateful, as always to everyone.
It is hard to believe that tomorrow Chris will begin his 18th and FINAL round of Chemo! 10 months ago it was hard to imagine this day would ever come.
So please continue to keep Chris in your thoughts and prayers...we are almost there!
Thank you. Patty

Christopher also got to enjoy Thanksgiving with some of his relatives which was a bonus considering he came close to having to spend this past week in the hospital! He enjoyed seeing his cousins from NH (below) as well as his Aunts, Uncles and grandparents. Of course he thoroughly enjoyed having his appetite on and ate much better than he has in quite some time! Thanks to his "Nonni" for that!

These last few images are from the trip to Hurlburt Airforce Base. Chris got quite the treatment all around. The Special Operations Ground Force Crew showed him the latest weapons AND let him handle them (as Mom looked the other way!). He also got to go aboard a MC130H. Again, going above and beyond Lt. Col. Gedney arranged for the ground maintenance crew to power up the plane so that he could really see how it operates. Very impressive and exciting for my future pilot! Many thanks to Annah for putting the word out and making this trip a reality for Christopher. Thanks also to Uncle Mike and Aunt Kathy for making the trip from Atlanta so that they could share this with us.

I had not seen him this mentally and physically "up" in a long time. He had been looking forward to this for months and was very excited to have finally made it. It made my weekend as well to see him in such good spirits.

And on goes Christopher's Wild Ride!...Whew!

The week started out OK, considering the fact that Chris was in the hospital for 4 long days of Chemo. At least it was a "normal" round, just the usual nausea, vomiting and interrupted sleep. The highlight being a surprise visit from Nana and Grandpa Bill! (Above picture)
Christopher was supposed to be in Orlando with them enjoying a week at Wild Kingdom and Disney's many other attractions but his recent set backs prevented this. So instead they came to him, along with two of their friends and it made a big difference in Chris' day. They live in California so unfortunately the visits are few and far between so this meant a lot to both of us...thanks Nana and Grandpa Bill!
We even got the good news that he needed to take a couple weeks off as the last 2 rounds of chemo were a bit much and could be damaging if he went for three in a row. Good news considering he wanted to be home for Thanksgiving so he could spend time with family and also be in good health for his upcoming trip to Fort Walton.
And then the downturn...
Christopher was discharged late Thursday night. Soon after that he began complaining of a constant headache, followed by extreme fatigue and continued nausea. By Sunday night the headaches were unbearable, he could barely stay awake and he had started to throw up blood. The on call Dr. seemed to think, as we both did, that his hemoglobin and maybe even platelets were low so he was scheduled to come in this past Monday for blood work. If only it were that easy. His blood work came back OK though he was given a transfusion just to be safe. When Christopher's blood pressure continued to drop and the pressure in his head building he had to stay for IV antibiotics and fluids. It sporadically helped the pressure but as soon as we got home after 7 hours in the clinic, he spiked a fever and felt very weak again so we ended up at the local Fire Station to try and get the pressure back up. This went on for over 2 days. The Dr.'s suspected he may have "pseudo tumor cerebri" simply meaning there was something causing undue pressure around his brain. He was scheduled for a head CT and a spinal tap to try and relieve the pressure. Thankfully after yet another day of a IV antibiotics, fluids and a head x-ray, a sever infection in the back of his sinus cavity was discovered. This was actually good news. So again pumped with various antibiotics and an exam to make sure the optical nerves were not too inflamed, his Dr. decided to treat that infection, see if he maintains his pressure and the headaches go away and we could avoid the further testing for now. WHEW!
So that was the latest and I will tell you not what we expected with only one round of chemo left!
As usual my "little man" toughed it out and did not once complain, even given the frightening possibilities we were presented with. He is now home, feeling better and back on track for his much anticipated trip to Hurlburt Field, AFB. Thank God! Special thanks to Lt.Col Edward Gedney for making this happen.
To a much quieter next couple weeks!
Happy Thanksgiving to all. I know I have a lot to be grateful for. Patty

This was the sunset over the St. John's River I witnessed as we left the clinic Monday evening. A welcomed sense of peace to a hectic day and days to follow.

In the midst of Round 17

I was instructed by one Christopher Blackwell himself not to take or use a picture of him, so instead the above is a photo of one of the Blue Angels flying over Atlantic Beach. Fortunately Christopher was well enough to venture on to the beach to catch this part of a local air show. Seeing as this has always been one of his loves it was great to see him out there enjoying the amazing aircraft.
Last week, round 16 of chemo was a tough one as he was quite sick in the beginning of the week. Probably due to his low blood counts going in. This week, however, he is doing very well. He is on round 17, the second to last round before being scanned and tested for clearance from this for hopefully a long while!
He also had a visit with Dr. O'Connor at Mayo Clinic to check on "the stump". All is well there so he does not have to see her for another 2 months...hopefully as she says he is running around on his new leg! Speaking of which, the prosthetist was kind enough to visit Christopher here at Wolfson's so that they could do another try-in of the "socket"-the part of the prosthesis that attaches to his stump. Because of the swelling from the chemo fluids, they will wait until next week to do a final fitting. The goal, for us anyway, is to have his leg before his trip to the Special Forces(Air Force) base in Fort Walton next week. So please keep your fingers crossed.
I think we are both getting a bit anxious as we near completion. It will sure be good to have some time, some long term time at home. I know someone else who would like that too...

For those of you who know Jake, I think you know what a great companion he has been to both of us!
I want to thank my brother Tom for orchestrating the fundraiser efforts in NH and for establishing a paypal account that I have included at the beginning of the blog page. Many thanks also to Grandpa Bill and the IBEW for the flyer that went out to the many Union branches, again in an effort to help raise funds for Christopher's Battle. The continued outpouring of love and support has been amazing and continues to touch my heart. For this I am very grateful to all.
With much love and appreciation, Patty

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