Finally! Tests complete.

This photo was taken after Christopher finished his last week of Chemo. On his return visit to Nemours for blood work and his monthly antibiotic injection, the staff gave him a well deserved end of Chemo celebration! He had made quite an impression over the last 10 months at the clinic as well as in the hospital.

On Dec 14 and 15 Chris had his end of protocol tests which included, an Echo and EKG, a full bone scan, chest CT and an MRI of his rt. leg (stump)-all of which involved injecting a contrast or nuclear dye to get a better picture. Chris had become an expert himself with his port -the device implanted in his chest to administer meds, including chemo. He not only reminded them that his port needed to be flushed after each procedure but he did it himself! Luckily we just happened to have a few syringes of heparin on us. He even de-accessed himself at the end of an 11 hour day of tests as there were no clinical staff available to do it. Scary. Thank God he is the brave one!

The next day he got custody of his leg which he was very happy about and bright and early the following day he was on a plane to CA! He had a wonderful Christmas and is thoroughly enjoying his visit with his Dad and that side of his family. He is being very well taken care of and has been treated to a stunt plane ride-complete with the stunts, a skeet shooting day with his grandfathers which he has come to love, not to mention being fed very well by Nana and Grandpa Bill. He more than earned this trip and deserves to take in every moment. He has one more week out there before coming home and getting back into some sort of "normal" routine. At this point that will be a welcomed change!

All in all the tests came back clean! Thank God. It took several days to get the results which was a bit nerve wracking to say the least. He will have to re-do the MRI next month for a better look at some areas that were not quite so clear. But he was finally given the go head to keep on truckin on that leg! That's all he wanted to know. I will continue to keep you all informed with each round of this "protocol" testing which is to be done every 2-3 months for a while.

We are both VERY excited and relieved that Christopher is in the clear and on the road to bigger and better things! A job well done by my brave "little boy" if I don't say so myself.

I want to extend a very special thank you to my brothers and Severino Trucking for all the effort and energy that went into not one but two Benefit Fundraisers for Chris. I am touched and amazed by the amount of people involved and tickets sold. On January 9th there will be the drawing for the second raffle, here in Florida. Huge thanks to all of you in NH, NJ, GA, FL MA and CA for the willingness to get involved.

A very heartfelt thanks also to "Grandpa Bill" and the IBEW (International Brotherhood of Electrical Workers), for reaching out to the different "Local" branches. As the result of a well written flyer about Christopher and our situation, I received many generous contributions to Christopher's Cancer Fund.

Each and every one of you has given so much, in so many different ways over the last 10 months that I cannot begin to express my appreciation and gratitude. I hope you all know how much it has meant to both Chris and I.

May we all enjoy a very happy, healthy and peaceful New Year!

With much love to you all! Patty

The look on his face should say it all...9 months of chemo is over!!

Final Round Complete!

This is Christopher and his teacher, Ronda, the day after "THE END" of chemo! He celebrated the milestone with his classmates...and a big chocolate cake of course!

Late Thursday evening, 9 very long months later, Christopher completed his 18th and final round of his chemo protocol! Somehow this day seemed so far off and now it is behind us.
Fortunately, it was an uneventful week. He had a mildly rough start with nausea, but he finished up feeling pretty good.
There was one minor setback, or disappointment rather. Chris was experiencing pain in his hip area (where the 2 screws are located) so he had a couple of X-rays taken to make sure all was intact. The films looked OK, however, small fractures may no be evident and given the brittle nature of the bones in that leg the Orthopedic Surgeon thought it best that he stayed off the leg until he has his complete series of tests on the 15th. It would make sense that his pain is muscular in nature and caused by not being used to his prosthesis. It weighs 8 pounds which is a lot considering he had been immobile for almost 6 months. Chris was not happy as he was doing quite well adjusting to his new leg. He was also looking forward to physical therapy this week so that he could be that much closer to losing the crutches. But all minor issues considering the road he has already traveled.
So on December 15th Christopher will have a chest CT, a full bone scan and an MRI to rule out any evidence of disease. If he is clear he will only have to repeat these tests every 2-3 months.
On the 17th he is leaving for California and very excited about a change of scenery and spending the holidays with family.
I am so proud of Christopher for the way he braved through this and also for the many people's lives he has touched. He continued to amaze me each step of the way.
We are both very grateful to have had such a strong support group behind us. I don't know that we could have hung in there as well as we did without the encouragement, love and constant prayers from everyone. I have to say, although it is just Christopher and I in this home, there was never the sense of being alone with so many of you always close at heart. So again, my heartfelt thanks and appreciation to all!
Thank God for the end of this chapter!!

I wanted to put up this picture from Christopher's very first day of Chemo. I still cannot believe how much he has grown both physically and more importantly mentally.

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