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

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

Wrapped up Round 13...14 coming up this week!

A "few" words from Chris...(and I was lucky to get that!)

Last week Christopher completed round 13 of his chemo protocol. Round 14 will start tomorrow followed immediately by round 15 the following week and then we will have a week off before the FINAL three rounds.

He tolerated this past week very well and is feeling pretty strong. Even his hip/femur healed and he hasn't experienced any pain since leaving the hospital a couple weeks ago. He had a little break from Mom last weekend as I was fortunate enough to get to Boston to be with my dear friends and enjoy much love, laughter and support. I am very grateful to have had Katie around to be with Chris and take over the helm. Chris also had a surprise visit from his step-brother, John who also stayed the weekend and was great company for him. Many thanks to both Katie and John not just for the help and relief they gave me but for their genuine care, concern and friendship with Chris.

Tomorrow Chris will see the prosthetist in the morning and then will be admitted for chemo later that afternoon. He should be home by late Friday, early Saturday. We will keep you posted on the much anticipated new leg!

Much peace and gratitude to all, Patty

The latest...and even a little "greatest"!

Couldn't resist the random "fall" picture. Nearing the end of September and it still creeps near 90 during the day here in Florida! I really miss my favorite season and in talking to Christopher about it, realized he has never seen the foliage! So here it is.

This past week did not start out so great. Only days after coming home from the last chemo/surgery stay, he came down with a cold, little to no blood counts and held a low grade fever until Sunday. He was when he was re-admitted and stayed until Wednesday. He rebounded fairly quickly though with his counts on the rise and his energy much better, he has even managed to get a few days of school in! (Homework is another blog waiting to happen.)
The really good news for Christopher is Dr. O'Connor gave him the go ahead on Friday to start the process of getting his prosthesis!! This has been a very long awaited moment so with D=her blessings we will first have an appointment with the Prosthetist to have a stocking, or "shrink wrap" if you will, put on the stump to make sure there is no swelling. He will make the call as to what type/size prosthetic Chris needs and then we will have an appointment with "Hangar" to see what options are available for him. Of course Christopher has been investigating this for quite some time so he knows that he wants to use this particular company and already has a pretty good idea of what might work for him. So although he is still in non-weight bearing mode for a month or so, at least he has something to look forward to. I know he was very excited when we left Mayo (Dr. O'Connor) and the look on his face...priceless.

A Quickie!

Well we almost had a full week off. Christopher was released from the hospital mid last week and came home feeling pretty good. Very little to no pain in his hip, just pretty tired and nauseous from the chemo.
He caught a bit of a cold and with his counts dropping and his immune system suffering the affects of chemo, he was running a low fever all weekend. Monday his nurse called after his blood work to warn us that his blood counts were bottoming out and asked that I take his temperature...sure enough he had a fever that warranted a trip to the ER and later admission to his home away from home, the 5th floor at Wolfson's.
Thankfully he had the Neupogen shot Friday to give his system a kick start and today the Dr. OK'd a discharge as his fevers stopped and at least his blood was on the rise. So considering the usual stay...this was a well deserved "quickie"
Friday Chris will see Dr. O'Connor at Mayo as a follow up to all surgeries. As mentioned earlier he is still quite a ways away from his prosthesis fitting, but maybe she will give the go ahead to push this along!
Stay tuned for details on a Fundraiser that my dear friend Tammy Packard of TAP lighting will be holding next month!!
As always, much love and gratitude to all!

Another bump...or should I say "break" in the road...

On his way down to the OR at Wolfson's...in his usual good spirits. Below are the screws that were placed in the femoral neck (hip socket area)...much larger than expected!

As most of you know Christopher fell last Saturday at home and with the help of the Atlantic Beach Paramedics/Fireman made it to the Emergency room and was finally admitted to Wolfson's Children's Hospital at 3am. Not for Chemo this time...a badly fractured femoral head on his rt. side (the stump)that would require surgery.

The Dr.'s decided to do an MRI prior to surgery in addition to the X-Rays and Cat Scan to make sure there was not any disease (cancer). After a long couple days and the involvement of Dr. O'Connor (his surgeon at Mayo), they decided to wait on surgery as it appeared the original tumor had metastasized. He was scheduled for a chest CT and bone scan immediately.

Thankfully the chest CT came back clear and in the meantime Dr. O'Connor consulted with some specialists at Mayo and believed the "suspicious" areas on the MRI could be Osteopenia-a thinning of the bone as a result of lack of use. Mind you it had been 3 days at this point of wondering and waiting and poor Christopher was scheduled for surgery a few times...was not able to eat in preparation for this sometimes for almost 12 hours at a time, only to have the surgery cancelled. It was extremely tough on him. Very frustrating and quite scary to wonder and wait with no definitive answers, only that at some point his femur/hip would need to be fixed so that it did not shift and become irreparable.

Through all of this I do have to add that once again Christopher kept a cool head and continued to believe that his cancer was gone and this is just another bump in the road. He is continually entertaining the staff. The nurses are still talking about 5am comedy hour and the surgical team reported his comedic relief in recovery had made their day!

His surgery finally took place on Friday and went very well. The 2 large screws in the above picture were successfully placed and should help to secure his leg. He does have to wait at least another 6 weeks before thinking about the prosthesis but the leg should be good and strong by then. The bone was quite brittle and will require some extra care to make sure his bones stay in good health. Unfortunately he did bang the end of the stump, just when it had finally healed, so that too will have to heal.

I wondered, as you may be why they did not do a biopsy while he was in surgery and the answer was they do not want to disturb that area (low end of the femur) at this time. We are choosing to believe that this "scare" on the MRI is indeed merely bone loss.

He started Chemo yesterday rather than wait as he had after the first couple surgeries. He had already missed a week and the Dr.'s agreed it was best to start ASAP. They also decided to wait until the end of protocol to do a bone scan and instead focus on healing that leg (bone), and getting Christopher a prosthesis so that he can finally go about his day as normally and comfortably as possible. He will be in the hospital until late Tuesday or Wednesday. He is very happy to have had a surprise visit from his Dad this past week and is enjoying the company!

This disease is very unpredictable and at times pretty unforgiving however it is Christopher that reminds me it is one day at a time. Going into surgery, as I continued to question the Dr.'s and search for answers he said "Mom I am having surgery to fix my hip, that is all for today so let's just go with that." Amazing outlook and ability for this 12 year old to not only say that but to really live that every day.

As always I am very proud of his strength and courage and thank you all for your prayers this past week.

Peace,

Patty

A Week in Fever Zone

As I write this Christopher is finally home from an unexpected 7 days in the hospital. This put quite a damper in the much anticipated 2 week break from Chemo!
He was admitted with a fever last week and possible infection which he was treated heavily for. He also had a biopsy of some suspicious spots on his arm and leg for which he was also given even more meds though there was no conclusion or diagnosis as to the specifics...just that the 3 big gun antibiotics and anti fungal medication got rid of it. It is always something.
The main reason for the lengthy stay was his blood counts had bottomed out and just did not seem to want to come up. He had 2 transfusions which helped but the process was slow and painstaking for Chris who was getting REALLY bored and tired of those 4 walls!
On Monday, August 24th, he will begin another 3 week run of chemo. Unfortunately, the nature of this game wreaks havoc on his system so though he may have recovered this past week and is in pretty good shape to go the next few rounds, he may again end up crashing. The good news is he had his last round of "Cisplatin" which is the chemo drug that makes you really nauseous and causes the blood counts to drop so drastically. So maybe the week he has "off" at the end of this 3 week gig will actually be a break!
Still waiting for the go ahead from Dr. O'Connor to start the prosthetic process. We should know more about that when we see her September 10th and are keeping are fingers crossed.
Christopher's school starts next week and though he will not be there the first day, we are hoping to try and get there on days when he is not in the hospital (oiy) and when he is feeling healthy enough. He is above average in his academic ability so we pray he will be back on track soon after his protocol is over in November.
As always, many thanks for all the positive thoughts and encouragement. Peace, Patty

Round 10 Completed!

Took a while to get this video uploaded as we did not have Internet in the hospital. We have been home for a couple days and enjoying life outside of Wolfson's...finally!

Christopher did very well despite his angst about puking and having this take it's toll on his system which it usually does. Could be that he had been out of Chemo for over a month due to his leg complications. As risky as that was as far as the cancer goes I think the upside is it gave his body a chance to rebuild. He hung tough during these past 3 weeks and hopefully we will have the next 2 off. Typically his counts will drop after a week or so, causing a fever which means back to the ER and hospital. This time he wants to remain optimistic and is eating well, trying to get good sleep and focus on some trips he has coming up which keeps his spirits up!

We saw Dr. Jiang, the Chinese Dr., on Friday and he gave Chris some homeopathic medicine for his kidneys and liver as well as something to help the skin around his incision heal.

Monday he will see Dr. O'Connor and is hoping to get the go ahead to start the prosthetic process. The "stump" is finally healing so it should not be long now. Just keep the thoughts and prayers coming...they are working!

Peace, Patty

Moving Forward...Round 9!

Again, sorry this may be just my boring dialogue but we still do not have access to video, and many of you have been asking about the latest scoop.
Christopher has had a rough past few weeks in regard to the healing of his leg.
After the second surgery where more bone was removed, (but the knee cap spared) to close where the scar line had opened up, he again encountered trouble. There was a pretty consistent draining which is not normal. Dr. O'Connor tried removing some of the stitches and putting in more a bit tighter - not pleasant for Chris as there was little warning before she attacked the stump! On a return visit because there was still a little leakage she consulted with another surgeon, removed all the stitches and decided to put him on a "Wound Vac" This is the pump like unit you can see in the picture, that is continuously running to remove any excess fluids and close the site.
He completed round 8 of chemo with the Vac in place and after a brief break from it he is back on it. Dr. O'Connor is still concerned with the tiny drips, especially seeing as he has 2 more weeks of chemo in a row, the last being the tough one on his system.
The lack of healing is most likely due to the effects of chemo on Christopher's immune system though leave it to him to find an article stating that this surgery (or this level of amputation) is controversial due to impaired wound healing. So who knows.
We do know that he is improving everyday and maintains an incredible amount of strength and hope that this too shall pass. He is "patiently "waiting for the day he can be fitted for his prosthetic but that is at least a month away.
He is feeling very good, eating really well - like a crazed teenage boy!- and is ready to face round 9 today at Wolfson's.
Thanks as always for all the love and encouragement as we continue to move forward on this journey, one day at a time.
Peace,
Patty
We are

One step backward...

Hopefully 2 steps forward to follow!

Christopher was scheduled for another round of chemo this past Monday, however after being at Nemours/Wolfson's for over 12 hours getting prepped we were sent home.

The scar on Chris' stump was not healing according to plan and had begun to open up putting him at risk for infection. Thank God I had some of the Dr.'s there take a look at it before he started or it could have been a bad scene. Infection is to be avoided at all cost.

We went to Mayo on Tuesday to see Dr. O'Connor for evaluation and she immediately scheduled Christopher for surgery on Wednesday. Dr. O'Connor removed more of his bone in order to create an adequate amount of skin to properly close the wound. Thankfully she was able to save the knee cap (he thought he would lose that going into surgery), and take bone away from another part of that area. Not having to go to the next level of amputation was a blessing as well.

All went well, the scar looks a lot better and Christopher was discharged late this afternoon (Friday). Though he is in a lot of pain his counts are still good enough to allow him to be able to enjoy a decent 4th of July weekend.

He will see the Oncologist on Monday, Dr. O'Connor on Tuesday and resume chemo either later in the week or the following Monday (July13th).

Seems to be a double edge sword whereas he cannot be without chemo for more than a 2-3 weeks at a time but in the same token it is the chemo that is preventing his body from being able to heal from the surgery. A very frustrating situation that he is handling much better than I. The unknown and unpredictable nature of this disease is quite scary. I continue to be amazed at Christopher's bravery and perseverance. We really do take one day at a time and pray for some light at the end of this journey.

Happy 4th of July to all!

Peace, Patty

The latest

We had a much better week thank God!
As soon as I figure out how to get my camera to take a good video of Christopher I will let him continue to fill you in on the latest with his battle.
Right now the biggst battle seems to be with the healing of his "stump" .
He survived the last emergency visit to the hospital a little over a week ago for high fever and a low BP scare and is now doing very well. He ended up staying for only 3 days which was amazing considering how hard he crashed.
The following week we saw Dr. O'Connor, hoping to get his stitches removed and be that much closer to getting his new leg. However, the wound (scar) on the right side was not looking so good so she decided to keep the stitches intact until July 10th.
It seems chemo is not great for the healing process and Dr. O'Connor is concerned about the next 3 weeks of chemo possibly interfering. Normally she would open up the area again (minor surgery) and remove the excess scabbing and wounded tissue and reattach the skin. But because Chris cannot go without continuing his chemo process this will have to wait. We are hoping and praying, as is Dr. O'Connor, that she can keep this level of amputation. So please help us pray for some better healing of that area!
Tomorrow morning Christopher will be admitted for round 8 of his chemo protocol. He will have 3 weeks in a row and then a little reprieve.
Until then he has enjoyed being able to have had a week at home to relax. Today he had a wonderful visit from his Uncle Tom, Aunt Jose and his four cousins...many thanks to them for making such a big difference in his day!
Hope to get some live video soon...
Lots of thanks and peace to all of you!
Patty

Darn those fevers!

Well we almost made a complete week out of the hospital.

With the exception of the first couple days following the "nasty" round of chemo Christopher has been feeling really good all week. This morning, however, he woke up with an excruciating headache complete with a fever of 103.2. We were hoping the shot he got last week would help keep his counts up and fevers down (you'd think so at $3,500 a pop!).

In any case he is back at Nemours getting fluids and antibiotics via IV and it looks like he will be admitted to Wolfson's this afternoon. as his counts dropped from 9,570 to 42. When the fever is down for over 24 hours and the counts go back up at least to 500, providing there is no infection he can go home.

Monday he is due to go back to Mayo to have his stitches removed. He is still doing very well adjusting to his "stump" but is anxious for the prosthetic which should be in about another month if all is healing according to plan.

I don't think he is physically feeling quite as yucky as he looks in the picture but mentally he is probably feeling much worse. The fevers are always a big downer after you think you are in the clear for a while.

I want to thank Debbie and Jane for going the extra mile and contacting the boys from Lincoln Park...Chris is sporting the hoodie they sent him and has framed the autographed album cover.

It was a huge bright spot in his day!

As always and as Chris has said earlier, we appreciate all the love and encouragement from family and friends. We feel truly blessed to be surrounded by such wonderful people.

Peace, Patty

East meets West

When Christopher got home from his surgery at Mayo he asked to go back to Dr. Jiang, a Dr. practicing Chinese medicine in Orange Park, FL. The weeks following his previous treatments with him were the best weeks he has had physically, following chemo. Although Dr. Jiang cannot do much in the way of offering traditional Chinese herbs as it interferes with the Chemo, he can help boost Christopher's immune system as well as help him with the side effects of Chemo.
I have had great success with Dr. Jiang and I am grateful Chris was not only open to his treatments but confident with it's results. Many thanks to Dr. Jiang and Eastern philosophies!

Adjusting to the "stump"

We were lucky enough to spend this past week at home after leaving Mayo last Saturday.

Christopher is doing great adjusting to his new leg, or as he refers to it "the stump". It is amazing how he is managing himself and not really needing much in the way of pain medication.

His grandmother, Sheri was here with us and was a great help and source of support for him.

He is anxious to get his new prosthetic as relying on crutches is tough and getting old. It will be, however, another 6-8 weeks before that happens.

We did get some great news last week regarding the pathology report. It seem that the tumor actually showed almost 80% necrosis as opposed to little or no necrosis first reported on the MRI prior to surgery. Chris was very excited about this as it means that the last 10 weeks of chemo was in fact somewhat successful...thank God!

He begins his new chemo regime tomorrow, at which time we will find out the new protocol which will probably be any where from 6-8 more months?

In the meantime he is eating a lot, has pretty good energy and overall feeling very well.

Now that we are back to the usual routine and the surgery is over with we will continue to keep you all updated as things unfold.

Thanks to everyone for your continued support and prayers!

Peace, Patty

Updates from Mayo

Hello all. Chris is winding down his 3rd day at Mayo and seems to be doing really well in his recovery. His pain has subsided somewhat (after a really rough 1st night Tuesday) and is at least manageable. He has had physical therapy the past two days to help him get the hang of crutches and one leg. He's done really well, making it all the way down the hall today. Most of all, his attitude seems really good: he's been open to learning the skills needed to face this challenge and curious about all the various medical protocols.

Dr. O'Conner said tonight that Chris may be ready to go home as early as tomorrow evening, but Dr. Joyce said probably one more night (Friday) to try it without the catheter. Chris has had lots of visitors: Uncle Ron brought up Non and Pop Severino yesterday, aunt Kathy was there, Ronda and Katy (Chris's teachers) have been a couple times, as well as Whitney, and oh I'm probably forgetting some. And of course, mama Patty and Nana Sheri have been nearly constant companions.

Chris seems to enjoy the "room service" food at Mayo and the HDTV but I'm sure he'll be glad to get home this weekend. Thanks to all of you for your encouragement, support, love, and prayers.

Hello From Mayo Clinic

Chris is resting comfortably in his room at The Mayo Clinic following his surgery today.
He has bounced back really well, eating a solid dinner and mostly being awake. He has both a nerve block and pain meds to help manage the pain--so far,so good. He has his Mom, Nana, and Aunt Kathy here waiting on him, and he wants everyone to know he's okay.

Surgery Update

Chris came out of surgery around 11:45 this morning and, according to Dr. O'Conner, the operation was successful. She was able to salvage the patellar tendon and knee cap, which is really good news as he will be better able to articulate his prosthesis. Chris has been in the recovery room for the past couple hours but hopefully will be in his room soon. He'll be in room #506 at Mayo until Saturday. If all goes well, he should be well on the way to healing in a couple weeks. The pathology results won't be back for at least a couple days. More to come later.

PS. Patty puked at Jason's Deli today. Like mother, like son.

D-Day

Okay, well this is it: D-Day for Chris's cancer battle. He went in for surgery a little before 10AM in good spirits and ready to get on with it. Dr. O'Conner said the procedure would take 90 minutes to 2 hours, then Chris will be in recovery here at Mayo for four days. Patty and Chris's grandmother Sherri are here at Mayo and pretty much a wreck. Please keep those prayers coming. We'll let you know how it turns out later today.

Thanks to Team Blackwell

It seems that well-wishers for Chris are spread far and wide. Here are members of "Team Blackwell" in Virginia that ran their event for Chris a couple weeks ago. Thanks so much to Steve and all of you for your support. And thanks to Uncle Mike too ;)

One Good Thing...

Well, actually two: Chris had his pre-surgery bone scan and chest CT scan yesterday, and both of them came up clear. Yay! So for now, it looks like the cancer is still localized in his leg. Also, Dr. Joyce (oncologist) said that the bone scan showed more necrosis of the tumor, which is really good news since it means that the chemo is having some effect.

On another good note, Chris saw Dr. Jiang again this week who gave him some Chinese remedies to compliment the chemo and strengthen Chris's immune system. It seems to have a very positive effect as this was one of the better weeks for Chris on chemo.

We'll keep you posted with new info as we get closer to surgery. Amazingly, Chris seems almost philosophical about the prospect of having his leg amputated. Quite a brave young man. Tuesday is the big day. Prayers y'all.

This Is Getting Serious

Chris is back at Wolfson for another round of chemo this week. His follow-up
exam with his ortho/onco surgeon, Dr. Mary O'Connor, on Monday was not good. The MRI showed that 2 months of chemo had little or no effect on the tumor in Chris's right leg. First off, this means that the surgery scheduled for Tuesday, 5/26 will involve amputation of his leg somewhere around the knee. An even graver concern, however, is that the lack of response to chemo indicates a highly increased probability of metastases elsewhere in his body. The oncology team is working on a change in chemo protocol because now Chris's survival is in jeapordy. This is serious folks. We know a lot of you have been praying for him, but the next couple weeks will be a turning point so we ask for any help you can give.

Chris will be at Wolfson until Friday late or Sat AM, then home for the weekend. He is still in good spirits as you can see from the video, eating fried chicken and playing with his MacBook. I know he'll be glad to get home and see Jakie.

A Break in the Action

This is a typical scene for Chris while "hangin out" in the ever so plush room on the 5th floor of Wolfson's...he and his beloved baby-the MacBook! As Chris puts it..."this is my way of saying don't bother me". Thanks to Nana for providing him with the capability to fulfill his favorite past time at his "home away from home"!

And hang out we did this past week. 6 nights and 7 long days were spent waiting for his fevers to go down and counts to go up. Put a damper in the much needed "week off" and was extremely frustrating for Chris as he was feeling so good the week prior. As always he handled it like a trooper...

Or something like that!

Monday Chris goes to Mayo for a comparison MRI and to meet with the Surgeon to discuss the upcoming surgery. Tuesday it is back to the 5th Floor for more Chemo. Let's pray that after these last two rounds the tumor in his right leg will have been destroyed by 90%. This will indicate "good response". Thanks to everyone for all the love and support.

Peace, Patty

A Rough Week

After doing so well following 'round 4' of chemo (Chris went to school 3 days last week and was eating like a champ), he crashed last Friday (5/1). He started running a fever and had to be readmitted to Wolfson. Over the course of the next couple days his blood counts dropped to near zero and temps hovered at 103, except for relief from Tylenol. So it's been nearly a week of unplanned time back on the 5th floor at Wolfson. Chris's blood counts (ANC, WBC, etc.) finally started to climb above zero yesterday and looks like his fever is subsiding, so hopefully he can go home by tonight or tomorrow AM. This unexpected visit to the hospital has been really draining and discouraging for both Chris and Patty. Please keep them in your prayers.

Home Sweet Home

Christopher wanted me to let everyone know that he is "very happy to be home, glad to be back in school and feeling great"!
He felt strong enough to attend school the last couple days and did very well. I believe being among his peers helps him stay positive and lends a bit of normalcy to an otherwise not so normal situation. If all goes well with his blood work tomorrow he will even be able to make the final class field trip on Friday. Many thanks to all the New Leaf staff and students for their sincere concern and understanding.
On another note...Chris agreed to try Traditional Chinese Medicine in conjunction to his current protocol. (yeay!) We saw Dr. Jiang in Orange Park, Florida. He has worked wonders for me over the past couple years and I felt strongly about having him in the mix . He is using homeopathic remedies to boost Chris' immune system and strengthen his kidneys, both of which have taken quite a beating form the chemo. I am so happy that Christopher is not only open to alternative therapies but actually says he believes that it can help him!
Next week we see the orthopedic surgeon to get more x-rays, an MRI and an idea of what type of surgery will be best. We will also find out how well he is responding to the current chemo protocol.
For now we are both enjoying some time at home.
I thank God that he is "feeling great" ...today.

Greetings from the Jag Room

Here's some video from yesterday AM in the "Jag Room", a common area with games, internet, etc. for the kids on the 5th floor of Wolfson. Chris was discharged last night and came home this morning. He's doing pretty well except for a lot of nausea from the Cisplatin. I know he's glad to be home with his mom and Jake. Fortunately there's a marathon of "Penguins of Madagascar" on TV to add some humor to a Friday nite. Hopefully he won't crash as hard as the first time he had this chemo regimen.

Report from the western front

Here you can see Chris and his mom, Patty, in room 510--his home for the week. This round of chemo includes 2 really strong drugs, Cisplatin and Doxorubicin, which follow the methotrexate he had the past 2 weeks. Yuk. Poor kid is taking it well, but these are nasty drugs. Notice mom's chipper attitude. I forget what "FINE" stands for...

Chris Back at Wolfson for round 4

Chris was admitted to Wolfson yesterday to start another intensive round of chemo. He made it through the past couple weeks in pretty good shape: not too much nausea or side effects. He may have even gained back a few pounds (yay). The highlight of last week was a visit from his entire class at New Leaf. Thanks Ms.McDonald so much for making Chris's day. Hopefully he'll be home by Friday. And where's Jakie?

Oh boy, more chemo.

Chris is back at Wolfson today for Round 3 of chemo (methyltrexate). He made through last week in pretty good shape, so hopefully this week will be more of the same. His blood counts were good and pain in the leg subsiding, so lets keep our hope up and prayers coming.

A Few Word from Chris

We're nearing the end of round 2 of chemo and Chris is doing pretty well. Hopefully he'll get to go home tomorrow morning. Jakie will be glad to see him. His uncle, Mike Staley, came down from Atlanta and stayed with Chris in the hospital last night. What a guy! Thanks Mike.

The Start of This Whole Mess

In February 2009, Chris was diagnosed with osteosarcoma in his right leg after complaining of knee pain for a couple months. He lives in Atlantic Beach, FL with his mom, Patty Severino, dog, Jake, and guinea pig Cocoa. He started treatment a few weeks ago which involves several months of chemotherapy, surgery to remove the tumor, then more chemo. Chris goes to New Leaf School in Neptune Beach and was on the Yankees little league baseball team in AB. His main doctor is at the mayo Clinic in Jacksonville but he is undergoing treatment at Wolfson Children's Hospital.