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

The Latest Medical Scoop

This is Christopher in a fire truck at a St. Baldrick's Day in CA. St. Bladrick's is a volunteer driven charity committed to funding research for childhood cancers. Many shave their heads in solidarity with kids fighting cancer. For more info on this organization go to http://www.st.baldricks.org Thank you Donna, (Chris' stepmom) for taking Chris and the Ventura County Fire Dept for hooking him up!

Christopher and his great grandfather, Arch Bacon. A classic photo, classy duo!

Nana, aka Sheri, took Chris to his first theatrical experience at the Pantages in LA. A night to remember for both he and his Nana.

Ok now for the scoop.

Before Christopher left for CA he had a chest CT that revealed some suspicious areas, i.e. more lesions on his lungs. He had also decided to stop chemo after 4 rounds (even before the CT), and not continue with the originally planned 6. He was having a rough time with the side effects and was becoming pretty low spirited being in the hospital so much. Not to mention the fact that it appeared the cancer was continuing to spread even during treatment.

He took a much needed break to CA and as you can see from the pictures had a wonderful time visiting with his family and friends out there. He felt great, ate well and enjoyed the break from the usual routine. He managed to get a couple days of shooting in with Grandpa Bill and Grandpa Roy which he loves.

Days after he returned he had his follow up chest CT.

We met with his oncologist and learned that there had been no change to the areas in question. I am taking this as a good thing. Though it was only a month, there still could have been noticeable growth. He will have his full set of scans again in mid June. So we were very happy that there was no talk of surgery-whew! All in all a good report...finally.

Christopher has decided to go with the interferon treatments. Starting next week he will have a sub cutaneous shot once a week for about two years. The first 4 weeks his nurse will administer the shot in clinic. She will show Chris how it is done and after the first month he can do it himself at home. We were told that the kids either have a really bad flu like reaction or they are fine. There is no in between. Should Chris have an adverse effect he will discontinue the interferon and try some sort of alternative treatment. (Thank God!)

Christopher asked if his port could be removed as he made it quite clear that regardless of what any of the other tests reveal there will be no more chemo. So the port will be history in the next couple months.

So that is the latest medical scoop.

Stay tuned for a very exciting "alternative" treatment with my all time favorite mammal!

I contacted an organization called Ocean Guardian and they have been more than kind and willing to help and I am most grateful.

Now take a look at the next blog entry to see what Christopher describes as the best day of his life!

Keep the prayers coming...they are doing wonders!

Thoughts from Christopher

Usually my mom does the posting, but I thought I would give it a go. Here goes. Earlier this week my mom and I went to see Dr. Joyce (the oncologist) about the CT scans of my lungs. There are some spots on the scans that are more than likely tumors. I will get rescanned in about a month. but until then I'm going to California to see my dad's side of the family, and also I'm heading to Fort Benning, GA to see all the stuff that they have there. I will most likely be started on interferon to see if that will help at all. If the scans come back positive I will have surgery to remove the tumors, but I will not do chemo because if it didn't work the first two time it probably wont work the third time. I will however try some homeopathic treatments (my mom's idea). This is all very frightening, but I should not, can not and will not give up EVER! -Chris

No More Chemo

After that lengthy meeting back in February with Christopher's Oncologist, the plan was to finish out the last 3 cycles of Chemo with a different mix of drugs. Reluctantly Chris agreed to at least try one more round and see if he tolerated it any better than the hideous 3rd round. He would than have a chest CT and depending on what that revealed either finish out the protocol or stop.
Thankfully the 4th round was a bit easier on him, as far as nausea and vomiting goes anyway, but not without complications. All things considered, one of his better weeks which may have been due to the abscence of Ifosfamide or just plain Grace.
Still, before the week was over he felt pretty strongly that he had just had his last round of in-patient chemo. He didn't say much about it, just that he came to that decision and was positive that he did not want anymore chemo regardless of what his tests showed.

At his pre-chemo clinic appointment the oncologist told Chris that somehow these kids know when they have had enough and she had learned to respect that rather than try and figure out how and why. She said at this point it is more important for Chris to think about the quality of his life and the things he wants to do. There are other options available to him, such as the chemo pill that he can take at home, that may be easier to tolerate but more importantly lend itself to a more "normal" lifestyle for him. Their preference was that Christopher finish his 6 month/6 rounds of chemo protocol and re-evaluate after the final scans. Oh well...none of this has ever gone "according to plan" . At this point I believe it is out of all our hands and most likely Christopher has a better (deeper) insight into all of this than myself and his Dr.'s. I told him I would back whatever decision he made.
His last bone scan was clear...great news, but there is a possible "issue" with the chest CT he had last week. In typical fashion, in almost a week I have not gotten any answers or even clarification on the results. We have a meeting tomorrow with his oncologist to (hopefully) go over his CT now that it has been reviewed by his thoracic surgeon as well as the other oncologists.
Based on that outcome will also be the discussion on what comes next. Chris is not even sure he wants to do the chemo pill...especially if there is more evidence of disease. He may consider some sort of alternative treatment but as always is just trying to stay with today and not get too far ahead. Admittedly he is much better at that me!
He is very much looking forward to his trip to CA and may even sneak in a trip to the west coast of FL before hand to visit his friend Austin. Somewhere in between that (and video games!) he does manage to get to school. It has been tough for him to keep up with everything between the hospital stays and the obvious negative effects of chemo on a cognitive level, but he trudges on and somehow always gets through another day...but just one at a time.
Please keep the thoughts and prayers coming...they are priceless and a great source of strength and encouragement.
Much love and peace to all,
Patty

Believe it or not I managed to snag George W. away from the Secret Service to take a picture with Christopher. He was very congenial and let Chris know that he admired his strength in fighting such a battle and encouraged him to keep it up. It was a very big moment for this 14 year old and I know that is one day he will always remember!

A Change in Treatment

It has been 2 weeks since Christopher was discharged from his last round of Chemo. So far, though his counts are very low, he has not fevered. Normally at 5 or 6 days out we are headed to the ER but I think because he started that last round with an unnaturally high ANC (due to the Nuelasta) he has hit a plateau. I am hoping he skates through the drop and is on the rise. His counts need to be at least 1,000 before starting his 4th cycle of chemo.
He has been feeling pretty good overall with some increase in fatigue and decrease in appetite the last couple days but considering the beating he took with his last round he is doing well.

Lawrence and I met with his Oncologist, Dr. Joyce this week to discuss just where Christopher is at with his disease process and to find out what his plans are for the final 3 rounds of this chemo protocol. Thank God for another set of ears as I tend to tune out when I have heard enough clamor and tune in just in time to say what is on my mind...always seeking the "bottom line" of course. (Thank you Lawrence for your continued support!)

Though some clarity was gained there was definitely no bottom line and still much uncertainty around Christopher's treatment options. One of the reasons we met with Dr. Joyce is that Chris was ready to call it quits after round 3 due and there was talk about the need to stop one of the drugs. Before leaving the room, Christopher let Dr. Joyce know that his last round of chemo was "hell" and wanted to know what options he had if he opted out of the last 3 cycles. He had had enough.
The discussion that followed, both with and without Chris present was very lengthy and I am not sure I could reiterate if I tried so I will summarize as best I can.

At this point, assuming there are no other signs of metastases, Chris has a 1/4 chance of survival. If he does have another recurrence his odds go down considerably. Though every attempt would be made to remove any more lesions that MAY show up, there is a limit on how much surgery can be done. Dr. Joyce did point out that for treatment of Osteosarcoma to be successful chemo alone will not work, that the surgery is really more effective and necessary.
We are assuming Chris is free of any tumors right now and the goal with the chemo is to keep it that way. The fact that he had a recurrence means he has disease running through his system that needs to be arrested before it can form any more tumor. Because there is still a good possibility of recurrence when this chemo stops, Dr. Joyce also believes it is necessary to do somewhere between 18 months and 2 years of Interferon treatments.
We asked if Chris' chance of survival would go down if he did stop chemo now and just do his scans and surgery when necessary. We also talked about putting Chris on a chemo pill that he could take at home and avoid life in the hospital. While it would pose some of the same side effects, it is a much more mild dose and not as hard on his system.
Again, no real definitive answers other than the current aggressive protocol is meant to "cure" Chris and keep him disease free. The other modalities (the pill form) would be considered palliative treatment and meant only to slow down the process. There is just not enough data/studies to really give him or anyone else in this situation many viable options.
My concern, like most of his family and friends, is that quality of life be considered a priority. So we are carefully still weighing his options.

On Friday Christopher will have a bone scan and an MRI of his leg to see if his disease has metastasized to any of his bones. He will have another Chest CT after his next round to use as a comparison to the one done after his first 2 cycles. This comparison should better define the areas that lit up on the last CT and are assumed to be scar tissue or blood vessels.
If all tests show no evidence of disease the plan is to finish the final 2 cycles of this chemo protocol. Dr. Joyce has decided also to discontinue the use of Ifosfamide due to it's harsh effect on the kidneys and replace it with Cytoxan. (the lesser of 2 evils I suppose)
If any lesions show up, chemo will stop and the priority will be surgery. Then the dreaded discussion begins again on what to do next. Considering Chris has maxxed out on the drugs most used to treat Osteosarcoma there was not even a guess on what the next step should be.

I know what Chris wants to do next...take a vacation to CA for his spring break and be done with chemo and surgery so he can plan a cruise this summer. So...until we know more I will leave it at that!
Thanks for hanging through this update. I hope it made some sense. Believe me it really is even more confusing and exhausting than it sounds!
Still...we have faith and hope and continue to persevere.
Much peace to you all.
Patty

A Nauseating 3rd Round

There was a reason I could not even get Christopher to look at me for a picture...he was having one of the worst weeks since his relapse and was not a happy patient. 6 days of nausea, vomiting and of course boredom. As you can see by the picture he comes fully equipped for the occasion with his various technological distractions.
Though he took quite a beating he managed to bounce back well enough to make it the long awaited Linkin Park concert in Tampa! Many many thanks to Dean for the incredible seats and backstage passes. It was a much deserved treat for Christopher to not only see his favorite band in concert but meet them as well! A great end to a rough week!
In less than 10 days following his admission to chemo his blood counts went from over 5,000 to under 70. Once again we are hoping to avoid nuetrapenia and a trip to the ER with a fever.
Next week I meet with his oncologist to discuss the next 3 months of Christopher's treatment. There may be some changes where one of the drugs may be tapered down or discontinued due to the risk of heavy side effects. We may even opt for an entirely different protocol. There is alot to consider and a much to think about, but primarily Christopher's well being and quality of life are the main considerations. His Dr.'s are still very determined to put him in complete remission so we are eager to see what they have to say and what his prognosis is at this point.
As always your thoughts and prayers are welcomed and much appreciated.
To a fever free "in between" time!

Backstage at Linkin Park

Happy 14th Christopher!

On January 7th Christopher turned 14 years old. He wanted to do some shooting so we went to Amelia Shotgun Sports where he rented a Beretta 680 over/under. He shot 2 rounds of trap...where he got 21/25 hits! He also did a round of sporting clays which was a but more difficult but fun nonetheless. It was good to see him out and about doing something he enjoys...and is quite good at I must admit!

I was glad to have had the opportunity to spend this special day with him and am very proud of how well he is handling his battle with cancer.

Happy Birthday Christopher...to many many more!

Lots of love! Mom

Special thanks to Nick for his patience and guidance throughout the day and for taking the time the teach Chris about sporting clays. Many, many thanks as well to Clyde for his kindness and generosity. It was very much appreciated and great to see such a well run and friendly operation.