Another Good Report!

Christopher had another 3 month Chest CT in August and got the good new that again, there has been very little change to those "suspicious" areas on his lungs. The oncologist and radiologist are still watching 2 areas  but the fact that the spots remain stable is a very good thing.  As I mentioned in an earlier blog, it is better to wait and watch than go in and remove or biopsy what is there. The areas are very small and the surgery too invasive to take that risk.
Though Christopher is not technically in remission, he is off treatment, feeling very good and his blood work indicates that his internal organs are also on the mend after having been beat up by all the chemo he had in the past.
When I asked if I could assume we are out of the woods, the nurse kindly reminded me that until he has been cancer free for 5 years I cannot take a full breath ):
Christopher had his relapse in September of 2010 so in 2015 we will be in a safety zone, and then after 10 years she said we could assume he is home free!
I truly believe Christopher's amazing  attitude and positive outlook on life (along with the many prayers from people all over the Country!) has gotten him to this point.
He has a true zest for life and his perseverance continues to bring him good health and keep him in good spirits. He is confident that he has beaten this disease and looks forward to all that lies ahead.

The picture I posted is from a recent trip to Chicago sponsored by Dana Farber and the Jimmy Fund.
Next weekend I am a doing the Boston Marathon walk to support the Jimmy Fund. They have provided a lot of great opportunities for the kids at Boston Children's that are dealing with a life threatening illness. I am very grateful for all they have done for Chris and what they do on a daily basis to bring happiness into the lives of so many.
I have included a link to the Walk below, if you feel so inclined to donate to the Jimmy Fund simply enter my last name in the "walker's search" and it will take you directly to my page.

www.jimmyfundwalk.org

Thank you for your continued support, encouragement and prayers.
Much peace and gratitude to you all.
Patty

The Journey Continues

The "Incredible Journey" comes to mind.
It was one of my favorite childhood classics and I can't help but think of Christopher and his battle ("journey") with cancer. The fact that he has beaten the odds to this point AND is also doing an amazing job moving on with his life while excelling in school is nothing short of Incredible.
Next month he has his three month chest CT scan in Boston. Physically he has been feeling great and is not worried about any complications.  He was able to enjoy a trip in June with Dana Farber/Boston Children's to Chicago where he saw the Red Sox play at Wrigley Field and also was able to spend a couple weeks in California visiting his family out there.
He has some pretty big plans for his future and seems to use this intense focus to enjoy living his life, today,  as a healthy active (and very mature!) teenager while keeping the faith in a healthy tomorrow.
Because of Christopher's positive attitude and ability to manage life with a prosthetic limb, his oncologist at  Dana Farber has asked him to speak with a young girl that will be having the same surgery as he did three years ago. I am very proud that he is willing to share his experience with someone else that will need a lot
of support and encouragement. I know he has more to offer than he realizes.

I am including some pictures from his trip to FL for the Red Sox Spring Training game sponsored by the Jimmy Fund. Once again my heartfelt appreciation to the special people at Dana Farber Cancer Institute and Children's Hospital Boston for bringing some joy and fun into the lives of many deserving teens.
We have not yet received pictures from the Chicago trip but I will be sure to post them when I get copies.
I do have some wonderful pictures from Chris' trip to CA but my Editor in Chief has pulled the plug on posting those! :D


Thank you all for your continued prayers and support as we continue to take and appreciate this Incredible Journey.

Much peace, Patty

Chris at Jet Blue Stadium, the new Red Sox Spring training Park in Ft. Myers.

Schmoozin' with some of the team...lucky!

Christopher hitting the links in FL...Looks like a natural!

The following pictures are from this past January when Christopher got his new prosthesis.
A big thank you to Jason and company from "Next Step" in Manchester, NH for their time and talent!

Life in New England

It's been about 6 months since Christopher and I made the Journey to NH. Hard to believe we not only made it up here but actually made it through (a relatively mild) winter...well for NH anyway!

I have not been very good about updates I am sorry to say...mostly because medically there has not been much to report...which is a good thing!

I mentioned in the last blog that we were to meet with his oncologist and one of the surgeons from Children's Hospital after his Chest CT was reviewed at a local surgery conference.

As has been the case for the last 6 months there has been no significant change to his scans therefore they do not wish to do another invasive lung surgery . The way the surgeon explained it to us is getting to the spots on his lungs (which are mainly centered in the chest) is like a chip shot. Unless he has a direct shot he feels that because the lesions are so small a.) Once they go in surgically and are relying on palpating the lungs they may miss the spots they saw on the scans and in attempting to remove the disease they take out unnecessary tissue and b.) it is better to leave well enough alone at this point and given his health and the risks involved with doing an open thoracotomy.

Chris is scanned every 3 months and is due for his next Chest CT the first week of May.

He is definitely feeling much better off the chemo and aside from fatigue and some shortness of breath he has been in good shape. He did experience the effects of his weakened Heart muscle (caused by heavy doses of one of the chemo drugs) when he ventured back into snowboarding this past winter.

Other than than that he goes to school regularly and even made honor roll despite the amount of school he had missed!! (A very proud mother notes!)

He has been adjusting very well to the New Hampshire lifestyle. He was hoping for more snow and the chance to do more snowboarding, try sledding and snowmobiling and get a real taste for a new England winter but I am happy to say we did not get enough snow this year. Whew.

He was very fortunate to get to go to FL with the Dana Farber crew -Thanks to the Red Sox and Jimmy Fund- and had a most excellent time. A truly wonderful opportunity for a very special and courageous group of teenagers.

In the next blog...as this one is getting quite lengthy I will put up some pictures of the new leg!

I will also attempt to be more timely with the results of his next set of scans and keep you updated on what Christopher is up to in general... as always there is never a dull moment!

I am thankful that we made it through the winter and look forward to more good health and adventures in the spring.

Thank you for taking an interest in Christopher's ongoing battle with cancer. The kind thoughts and prayers are priceless.

Much peace to all, Patty

The following are a few of the photos from the past few months:

The photo below was found in Twitter by Uncle Mike. It is from a trip with the teens from Dana Farber to Ft. Myers, FL where they had the opportunity to see a game at the new spring training park and meet some of the players.

Chris did an awesome job hitting the slopes on his snowboard for the first time since his amputation.
Here he was able to hike about 3 miles...again thanks to the new leg being much more forgiving than the old prosthesis.
Though he didn't get to see as much snowfall as he would have liked, he did get to experience winter in New England.
Shoveling is not as easy as it looks!

Onward and Upward

We went "Upward" alright. After much debate and resistance on my part, I decided to entertain Christopher's desire to move up North, to New Hampshire where I grew up and the majority of my family and many friends are. Chris was never a big Florida fan and has always preferred the cold over the sun and surf (yes he really is my biological child!). I had promised him at one point during his first year of treatment when he wanted to move to a colder climate that if he had a relapse and his prognosis became poor, we could move somewhere he preferred. Of course I thought that would be Alaska, Northern California maybe...but in addition to the colder weather, Chris also wanted to be near family and friends. I have to admit that as big an adjustment as this is, (for me anyway), I am glad that he persisted in talking me into making the move.

We have already been to Children's Hospital Boston/Dana Farber Cancer Institute where Christopher will be treated. So far we are both very happy with his Oncologist, Dr. Janeway and her initial opinion. This past week he had another chest CT that was reviewed by a board of surgeons from the Boston area. I do not have the official word on what they saw other than a brief message from the Dr. saying that it is still not a good idea to attempt surgery at this point. His lesions remain stable but because they are small and in an area that is difficult to reach they prefer to wait. Again, the type of surgery required to remove the lesions is quite invasive. The oncologist here as well as the ones in Jacksonville told us that it is likely he will continue to grow tumors in his lungs because of the aggressiveness of the original tumor, how quickly he relapsed and his poor response to chemo. Given this it is best to wait until it is absolutely necessary before going back in.

Chris is no longer taking the chemo pills at home. Dr. Janeway believes his body needs a break from them and if need be he can always go back on. She said that after the relapse there really is no chemo that effectively treats his disease and it is not even certain that the pills have been slowing down the growth of the tumors. By stopping the medications it will give Christopher's body a chance to get stronger as well as determine if they actually help stunt the growth process. Chris was very happy she agreed to stop the chemo as it now means he will start to grow back his hair...one of the side effects of the chemo that he was not happy about. Given the 2 feet of snow that fell in October and the chilly November temps, a full head of hair is important!

We have several appointments in the next couple weeks in Boston to meet with his Oncologist to review the opinion of the surgery board , do some blood work and also meet with a general surgeon as well as an orthopedic surgeon. Thankfully my dear friend Debbie has graciously been accompanying us on the many appointments and being a Bostonian from way back has made navigating the very busy medical area much easier!

So far Christopher is happy to be in a colder climate and is enjoying being surrounded by family and friends. He already got his wish to romp in the snow I have a feeling there much more of that to come!

Wishing everyone a very blessed and happy Thanksgiving. We certainly continue to have a lot to be grateful for.

With much love and peace, Patty

This poster was displayed in the lobby outside the lobby of the Florida Times Union Building naming Christopher as the Profile Patient for Wolfson's Children's Hospital and special guest at the Florida Forum. The photo in the poster was taken at a Jacksonville Sun's game where Christopher threw out the first pitch.

This is Christopher and I at the reception after the Florida Forum. Mr. Koppel was very down to earth, quite funny and his speech was as entertaining as it was informative.

The Challenges Continue

Both Christopher and I continue to face many challenges...yet somehow by the Grace of God we seem to persevere.

The past few months have not been easy. Because of the financial strain from not having had viable part time work, (working full time right now is not an option), sadly, we had to move out of Atlantic Beach. Thankfully we had my parents home to go to but it is over 80 miles south of where we were living. Though he did not complain, this came as a disappointment to Christopher as he could not return to his old school on a regular basis. He was actually looking forward to going back to school, believe it or not, because he was not only entering high school but also not tied to the hospital treatment rigors and able to get back to a "normal" schedule. So we thought. He does participate in virtual school but it is no replacement for the real thing and being home alone all day does not make for a healthy spirit.

(My parents had to stay up north due to their own medical issues)

Christopher also suffered a big disappointment when his plans to move to CA in June did not pan out and his summer vacation was cut short.

Might I mention we have also battled some serious issues together... which have not always harmonious... to say the least!

Yet today, despite the adversity and unexpected changes, we remain a team.

And although life does goes on, it has been far from "getting back to normal".

This past week has been no exception to these constant challenges.

Christopher had his protocol scans on Thursday and late Friday I FINALLY got the call from his oncologist. (A perfect example of MY biggest challenge...waiting and wondering and still not getting any answers!) His chest CT of the lungs still show areas of concern and there is even a new lesion that is being watched, but this was good news. With his not being in remission, we did not expect it to be clear, just hoping to avoid the inevitable surgery.

The not so good news is that the bone scan revealed a lesion on his pelvis. It was not clear if this was in fact his original osteosarcoma that further metastasised so want Christopher to have another x-ray of that area. Because of the ambiguity of that phone call, I emailed Dr. O'Connor on Saturday (his surgeon at Mayo Clinic that did the amputation) and asked her to look at his scans. She emailed me back almost immediately and while she said she is concerned, until we do an MRI of that area, with a contrast dye, she will not know for certain that it is tumor. She assured me that whatever it is we can handle it and she will do what she can.

And the waiting game continues. Chris will have a follow up appointment with Dr. O'Connor on Wednesday after his MRI. I am praying that it is bone atrophy, or even a stress fracture?Something bogus on the bone scan perhaps?

Speculation until Wednesday, so Chris and I will try and stay with what we know today. As he has said throughout this ordeal...no sense worrying about something that hasn't even happened yet. If only my brain operated like that!

Fortunately we are blessed with being surrounded by a lot genuinely caring souls. I have learned to accept help when I need it (Ok still working on that but getting better!) and cannot begin to express my gratitude to my family and friends for their continued support and kind gestures. I think you all know who you are and I deeply thank each one of you. I want to also give a heartfelt thank you to my brother who has taken on a lot of my financial overload which has been one of the hardest things for me to deal with. Having some of that stress relieved allows me to focus on Christopher and his medical needs and also take better care of myself.

Sometimes I don't know quite how we do it, but what I do know is we do not do it alone.

I will continue to keep you all up to date as it unfolds.

With much love, Patty

On a better note...stay tuned for photos from The Florida Forum where Ted Koppel will be speaking and Christopher and I will be special guests. Christopher is the profile patient and his "story" will be presented in an attempt to bring awareness of the mental as well as physical difficulties involved with a serious illness.

(The above picture is from a photo shoot for another upcoming fundraiser for Wolfson's Children's Hospital)

Summertime and the living is...

..."interesting" maybe but not exactly easy! However, with a little bit (okay a lot) of patience, faith, help and encouragement from family, my Pal and friends, the living is possible!

There have been a few changes since the last blog entry. I apologize for the rather large gap between postings but in addition to the usual physical challenges for Christopher there have also been some psychological and cognitive issues (chemo brain is real!) related to his cancer battle. Not to mention the ensuing behavior changes that go along with that. I have not been back to work full time since this started and I know the financial stresses of that weigh into that equation as well. It has been a huge challenge to say the least, but as summer is coming to a close, we are both still standing...sometimes I too feel like on one leg only...but we press on.

As I mentioned in the last blog back in April, Chris had opted out of the last two months of his 6 month chemo protocol and was going to start interferon treatments. That never happened due to both insurance companies denying the claim as it is not traditionally used to treat cancer. Because Christopher was not (and is not) in remission he still needed to have some form of aggressive treatment. He definitely was clear about not wanting to go back in the hospital for more chemotherapy, so he agreed to begin the chemo pills which he still takes at home. It was not the Dr.'s first choice. As I mentioned in an earlier blog it is just palliative, but hopefully it is slowing down the process so that they can limit the number of surgeries to remove what is on his lungs. The open thoracotomy is a very invasive procedure which he would have to have on both lungs and his body just cannot handle too many of them. Because the last chest CT did not show the lesions to be creating any problems at this point, the Oncologists and Surgeon decided to wait before going in again. Which was fine with us!

Just to clarify, the pills are not meant to get rid of the existing lung lesions, just intended to slow down whatever cancer cells (the metastases) that are traveling through his system. He takes them for 14 days and is off for 14 day. He does get a little nausea, loss of appetite and his hair is not growing the way he would like but this protocol is much more tolerable for him than the alternative. The only thing he has to do is blood work before and after he finishes and an exam once a month. His counts will not drop as drastically as with the inpatient chemotherapy but he can get quite low and fatigued. His port was removed in July as a leak in the line had been causing him some shoulder pain, so without that he does not have to be rushed to the ER at the onset of a fever.

Chris has been quite involved with Wolfson's Children's Hospital. In addition to being on the children's Board of Directors, We were asked to attend a lunch, representing the Oncology Unit, where a very large donation was made to the hospital. Christopher also got to throw out the first pitch at two Jacksonville Sun's games which was pretty exciting for him. Karen Wolfson is also doing a biography on Christopher to present to the Board, more specifically the behavior challenges that can go along with the type of ordeal he has been through, in hopes of getting more funding for the hospital's Psychiatric/Behavioral Departments. In January he will participate in the hospital's birthday celebration/fashion show fundraiser. I am including a poem at the end of this that Christopher wrote for that event.

Tomorrow Chris will see his oncologist for a routine exam and blood work. We will find out then when his next Chest CT and bone scan will be. Until then it is back to school for him and WE BOTH look forward to a healthier, more productive and prosperous year!

Many thanks to all of you, near and far, who continue to support us with your kind thoughts and prayers! With much love and peace, Patty

Thanks to Ana for these pictures of Christopher and for giving him a little Colombian culture!

A poem by Chris:

Unpredictability's

They say life is interesting,

both good and bad,

fun and painful.

It is these unpredictability's that make this true.

Whether it be winning the prize of a lifetime,

or your life being forever changed by disease or accident.

It is these unpredictability's that make life what it is...interesting.

"The Best Day of My Life"

I was not sure where to begin so I will start by thanking everyone that made this day possible and very memorable for Christopher. I apologize up front if I forget anyone, and also for not being able to personally name and acknowledge all the genuinely compassionate men and women at Fort Benning. I was not on the tour with Chris so the details on the pictures will come from Uncle Mike and Christopher will, in his own words recap his experience.

I heard the amazing run down of that day a few times as Chris very excitedly repeated his story to family and friends, but I think it will be best told coming from him.

So on with the accolades... For making it happen I want to first thank Brandi Cook, Director of Jacksonville's "Dream Come True" . Brandi has been instrumental in granting many wishes for Chris and really hit the ball out of the park with this one! She has been a wonderful source of encouragement for Christopher. Also on the home front, many thanks go to Mike Staley, AKA "Uncle Mike". Christopher asked his Uncle to go with him as he knew he appreciated the Armed Forces, coming from a military family dating back to the Civil War! (Plus this was deemed a "guy thing" so I reluctantly got the axe!) Mike not only took care of our stay while we were in Fort Benning but also made sure there were proper thanks given to those member of the Army Rangers that took the time to make Christopher's visit exceptional. You will see a photo of Chris that we took the night before and put in a frame that Mike had engraved with Christopher's name and "Army Strong". A well thought out and very well accepted gift. I am also thanking my brother in law in advance for commenting on some of the photos as I was not there and do not want to mis respresent anyone!

Next and very importantly are the amazing, kind and compassionate people at Fort Benning. I had no idea that they would go to such great lengths to make this day one that Christopher calls "The best day of his life". When I heard the run down of the days activities I was thrilled for Chris and grateful for all the effort that went into planning all of it. Most of all I was extremely moved by the sincere compassion and heartfelt presence I saw in the photos and videos. It was very clear that their service that day was for a child involved in a fight/battle for his life. As a mom, it was hard not to be there but seeing the expression on their faces as well as Christopher's intense re-telling of his experience I don't feel like I missed a thing. So my very heartfelt thanks to Elsie Sono, Public Affairs Officer; Major General Robert Brown, Fort Benning commanding general; Col. Ryan Kuhn, 197th Infantry Brigade commander; Sgt. Glenn Eller, an instructor and shooter with the U.S. Army Marksmanship Unit and Olympic Gold Medalist; USAMU platoon sergeant 1st Class Charles Coffey (who gave Christopher his very own President's Hundred Tab worn on his last deployment to Afghanistan; The Ranger Training Brigade; The 194th Army Brigade; the 197th Infantry Brigade and all the men and women at Fort Benning for sharing their themselves and their time with my son. Some of the things that Christopher did that day included flying in a Black Hawk helicopter,riding in a Stryker, seeing a Rangers in Action Demonstration, trap shooting with an olympic gold medalist, hands on with a combat simulator and shooting a M240! Whew...and much more but I will let him comment. I have not seen Christopher smile so hard and be in such great spirits in a very long time. So again, my thanks to all of you that were a part of a very special day in this young boy's life. Much Peace, Patty