Chris Blackwell's Cancer Battle

Onward and Upward

2011-10-19T05:13:00.001-07:00

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

2011-09-24T05:47:00.000-07:00

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...

2011-08-27T18:52:00.000-07:00

..."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"

2011-04-07T17:06:00.000-07:00

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

2011-04-07T07:48:00.000-07:00

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

2011-03-10T16:11:00.000-08:00

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

2011-03-04T19:32:00.000-08:00

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

2011-02-02T11:49:00.000-08:00

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

2011-01-23T07:24:00.000-08:00

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!

2011-01-14T17:46:00.001-08:00

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.

Fever #2 Right on Schedule

2011-01-10T19:31:00.000-08:00

Back to the ER we went on Thursday the 30th. Almost a week after being discharged from his second round of Chemo, Christopher fevered as his counts had dramatically dropped since the weekend. Invariably, with the heavy duty chemotherapy drugs Chris is receiving his counts will drop (eventually to 0) immediately following his hospital stay and somewhere between day 11 and 13 from the start of his chemo he will fever. At that point he will require immediate IV antibiotics and blood cultures until the fevers stop and his counts recover. Fortunately his "Neulasta" shot came on schedule so he was able to go home later New Year's day. Within the next couple weeks his counts were back up to almost 5,000...a somewhat false read due to his shot, and they will slowly drop even without chemo but at least it gives him some strength and energy and room to move before the next round. His ANC needs to be at least 1,000 before getting more chemo. He has been doing very well both physically and mentally aside from having cold/flu virus that was going around since before Christmas. He has been on antibiotics ever since seeing as a dull cough persists and could be also due to his lungs having had such trauma from the recent surgeries. He is very susceptible to pneumonia so he is also on an additional antibiotic-Bactrim-that he takes every Saturday and Sunday regardless of how well he is feeling.

We also got the results of Christopher's last Chest CT. It seems to be OK (free of any lesions), however, (there is always a "but"), there are areas that show up which are assumed to be scar tissue and another two new areas that appear to be blood vessels. So I am going with a clean scan but I will admit I will feel better next month when I see improvements on those questionable areas.
We also learned that his chemo protocol might be cut short as he will have maxxed out on one of the drugs-Ifosfamide (IFEX). He is due to go in this Saturday, January 15th for his 3rd cycle and should be home Thursday evening. What will happen after is to be determined. A bit disheartening...frustrating...even scary maybe? You bet. We were warned that this is experimental, that there is no silver bullet that can cure Osteosarcoma but I didn't realize that this plan would be cut short and that what comes next will be even more uncertain. Seems I always have a question to which there is really no definitive answer...my own "path" so to speak and lesson in letting go and trusting what will be. Still, Christopher continues to hang tough and fight like a true champ. He is pretty unaffected by the many bumps in the road and I believe that is what allows him to persevere.

I will be sure to provide more on the next step with his treatment when I talk to his oncologist.
Until then we hope for a quiet chemo week and look forward to a big treat for Christopher next weekend!

Below is Christopher with Eric Mason of Premier Physical Therapy.

In between hospital stays Chris has had to have physical therapy again to try and relieve some of the pain he has been having on his left knee. Much of that comes from compensating for the prosthetic's mechanics. Eric, and his partner Chris were very effective in correcting Christopher's gait and making the necessary changes and recommendations for his prosthesis. It has made a big difference so far and hopefully will alleviate some of his symptoms.

Second Chemo Cycle Complete

2010-12-27T18:11:00.001-08:00

Christopher finished his second cycle of chemo just in time to celebrate Christmas.

On Christmas Eve, after spending 6 days at Wolfson's, Chris was discharged with no complications and feeling pretty good considering the heavy doses of meds he is getting. This was the first Christmas he has spent in FL in many many years as this is usually his time to visit CA so we were happy to be home and able to take a short trip to his Nonni and Papa's!

On Monday (12/27), Christopher had his blood counts taken and I was surprised to learn on Tuesday morning that his counts had already dropped to 26 and he is now considered neutropenic! (Again he originally started with an "ANC" of over 4,000!) When he bottoms out like this it typically means a fever and trip to the hospital but so far he has not spiked a temperature. Though it is expected that this type of chemo will wipe out his blood counts (the absolute neutrophil count), it seems to be happening much quicker than it did the last time. He has been on antibiotics since he got out of the hospital and finally received his "Neulasta" which should help. For a mere $6,000/shot he can inject himself after each round of chemo to boost his body's ability to produce more neutrophils and prevent a long hospital stay after fevers waiting for his blood counts to come up. He may well have already hit 0 and be on the rebound. One can only hope!

Next week, January 4th he will have a follow up chest CT so see if his lungs are still clear. The following week he will begin the 3rd Chemo cycle. (If his counts are high enough that is)

I hope everyone had a wonderful Holiday and many many wishes to you all for a very healthy and happy 2011!

Much love and peace to you all,

Patty

Fever Week

2010-12-09T07:53:00.000-08:00

A day at Wolfson's Children's Hospital... a demonstration on liquid nitrogen from a museum of science employee... complete with ice cream sampling!

Unfortunately Christopher spent almost 5 days in this past week after developed a fever late Friday night. His blood counts had been progressively going down since his last round of chemo. When his ANC (absolute neutrophil count) fell to 30 on Thursday's blood check (from over 4,000 when he began chemo) his nurse called and told us to be careful and watch for fever.
Sure enough we were off to the ER early Saturday morning and he was admitted that afternoon. His counts were literally 0 and he had fevers on and off for the next few days. Just goes to show you how much one round of Chemo really attacked his system.
Christopher was given IV antibiotics and fluids as soon as we got to the ER. (One bonus of being an oncology patient is there is never a wait...he goes straight back to triage.) He continued to recieve them until he was with out fever and also could not be discharged until his counts were over 200. With the help of "Neupogen" via IV his last couple days there, the counts finally budged. He will be getting a similar injection after each chemo cycle called Neulasta which will not prevent his blood counts from dropping so drastically but it will help them come up faster. During the 5 days he was there he lost his hair which was very upsetting to him as he waited so long to get it back and had become quite attached to his new locks. I must say though he does sport a good looking bald head! He also lost his teenage appetite which is a big bummer for him as well! What he has not lost is his spirit...he is quite full of that and then some!
Next week will bring more blood work and a visit to the clinic for a physical. His counts will need to be at at least 1,000 before he can begin his next chemo cycle. (There are other aspects of his blood work that are looked at but the ANC is what they consider for overall immune system health.) He will begin his next round on Sunday December 19th and should finish by Christmas Eve. With any luck he will feel well enough to celebrate Christmas and enjoy some holiday cheer!

In the meantime Chris will get some school time in and enjoy his time at home.

Blessings to you all!

Patty

First Chemo Cycle Complete

2010-12-02T19:50:00.001-08:00

Thanksgiving at Wolfson's...Aunt Kathy, Christopher, Nonni, Papa and Mom

I am already a bit behind and it is only the beginning of Christopher's new protocol! Here is the latest:
Christopher started his first week of Chemo on Monday, November 22nd and finished on Saturday November 27th. So yes, we spent the Thanksgiving Holiday in the hospital, but honestly it was not bad at all. For the amount of seriously ill children on the 5th floor there was more than enough good spirit to go around! There was also no shortage of good food for all and as a special bonus, Christopher's Aunt Kathy and Grandparents came to visit bearing plenty of treats as well.
It was not an easy week for Christopher. His Chemo lasts for 5 days with the 6th day being an 18 hour post hydration period. We both originally thought that the 2 Chemo drugs, mentioned in an earlier blog, would only run a total of 4hours with a half hour of an additional drug to prevent bladder bleeding. We were NOT aware that he would be given the drugs every day for five days. To me that seemed to be a lot to administer in one round...but then again...I am of a different mindset when it comes to all this. It is no wonder that he had several days of nausea and intense vomiting and was pretty worn out by the time he got home. Thankfully though, on Thanksgiving he was more than able to hold down a lion's share of the good stuff.
He did not have any of the more serious complications that come while the drug is being administered such as extremely low blood pressure and bladder bleeding. So all in all it was more of the same of what he went through last year. All too familiar for him in fact, which I believe has made this time around a little more difficult and a lot less tolerable. Yet he made it through like a champ and will do what it takes to beat this!
One Cycle down and 3 weeks off!
Much peace to all of you!
Patty

Chemo Gets Another Shot

2010-11-23T15:10:00.000-08:00

This is Christopher at Nemour's getting his port accessed just before his admission to Wolfson's to begin chemo...again.

On Monday Christopher began the first day of his new chemo protocol. Although the cancerous lesions were removed from both of his lungs, because his original cancer had metastasised he needs to be treated systemically to assure all cancer cells are destroyed. His new protocol will consist of 5 cycles using a combination of IFOSFAMIDE (Ifex) and ETOPOSIDE (VP-16, VePesid). He will have 5 straight days of the chemo with the 6th day being a post hydration period for 18 hours. The two drugs are administered through his port and actually only run for a total of 4 hours. The rest of the time is IV hydration and anti nausea meds every 6 hours. He is also receiving a drug called Mesna that is given immediately following the Ifex via IV to protect the bladder as this drug can cause bladder bleeding. There is also a possibility that he will experience confusion or seizures with the first few doses but so far the initial dose was okay. (Well I think the current "confusion" is natural :)

Other than that there is the usual nausea and vomiting-which he has unfortunately already experienced, hair loss-which will come in a couple weeks, and a drastic drop in his blood counts after about 10 days following treatment-which usually means a fever and trip to the ER and a more time on the 5th floor until he recovers. Oh and a new one this time is a drastic drop in blood pressure so he will be monitored closely for that. The list goes on but the other side effects usually come much later down the road. His total protocol should take about 6months give or take a few for complications. Whew!
Christopher is more apprehensive this time around. Partly because of the confusion/delusion possibility with this new Chemo and also he is dreading losing his hair again. He is 13 after all!
Not to mention he will be spending a lot of time in the hospital and missing his usual trips to CA. We will be celebrating Thanksgiving here at Wolfson's which should be interesting. The upside of that, however, is he has survived another year of this disease and is able to celebrate it at all!
Besides my sister is graciously bringing my parents up to visit us and will be bearing some real ("Non's") food! Something he is always thankful for!
I hope to get a video of Chris in the next couple days so that you can hear all this from his perspective.
I wish you all a very Happy Thanksgiving and am grateful to each and everyone of you for the support, encouragement and prayers that keep us going strong.
Much love and peace,
Patty

p.s. I couldn't close without showing you Christopher's matching thoracotomy scars. As the surgeon said "just large enough to get my hands in the cavity". Surgeons are odd.

Battle Scars!

2010-11-09T14:56:00.000-08:00

Christopher is definitely not lacking any war wounds. The above picture is from his first Open Thoracotomy on the right lung. Though a very intense surgery Christopher bounced back and went in for more this past week with the second Open Thoracotomy on the left lung.

These are the images taken with a thorascope during his first surgery to remove the largest of the nodules on Christopher's left lung for biopsy and confirmation of metastases. A simple procedure compared to the two very invasive and complicated surgeries he had these past couple weeks.

Christopher is still at Wolfson's Children's Hospital recovering from his last surgery. The Surgeon, Dr. Dokler removed 3 lesions from the left lung and also implanted a double port that will be used for chemotherapy, blood work and other IV drugs. Two and a half days later he is still very uncomfortable and not very mobile. He has not really eaten or had much to drink which is not helping the healing process. His chest tube and nerve catheters were removed today so that was one good thing and, thanks to Katy, his XBox arrived with a long awaited game so fortunately he has his favorite distraction! If Chris can go all day tomorrow without IV pain medication and his chest x-rays are clear he may get to go home on Friday.

He will get another week or so to heal and then his chemo regime will begin. More to come on that plan of attack when we have the details.

For now we are happy that ideally both lungs are now free of metastases and there are no more surgeries planned for the near future!
Thanks, as always for all the support, positive thoughts and prayers.

Patty

Just when we thought it was over...the relapse.

2010-10-27T18:01:00.000-07:00

After learning of his recurrence, Christopher got the OK to take a trip to Boston. Many Many thanks to the persistence of my dear friend Debbie and her sister Jane for making this possible. Christopher got to see Boston for the first time as well as family in NH during peak foliage-another first for him! Thanks again Deb and Jane and to my family for being there!

As I mentioned in an earlier post, part of Christopher's cancer protocol is having a bone scan, chest CT and MRI of his right leg every 3 months. On September 15th Chris had his 3rd round of these test. Days later we learned Chris' chest CT came back abnormal. He had several lesions not present on prior screenings as well as some new areas of concern. It has been a long and exhausting past month and a half dealing with the different scenarios surrounding his relapse but I will do my best to keep this brief (Ha!) and fill in the blanks on a subsequent post.

Christopher first had surgery in early October to remove the largest node on his lower left lung. This was done with a thoracic scope, removing the lesion for immediate biopsy to determine if it was part of his original disease. It was confirmed that his Osteosarcoma had metastasised to his lungs. This was very devastating news and the prognosis given was pretty grim. Two of the nodules or lesions on his right central lung were deemed "inoperable" making recovery or return to remission extremely difficult. After gathering several second opinions from the major players and meeting with his oncologist several times it was decided that Christopher would have an open thoracotomy to first attempt to remove all disease from the right lung, allow him to heal for 2 weeks, remove the remaining lesions from the left lung (another open thoracotomy), at the same time placing the port so that chemotherapy can begin as soon as he is healed. (2 weeks?) The Chemo protocol will be about 6-8months followed by 12 months of interferon.

This did not come without much debate from Me and some of you close to me who wanted to incorporate or first try alternative therapy, namely Traditional Chinese medicine and other modalities using herbs and diet that would help build and strengthen Christopher's Immune system rather than destroy it. The chemo protocol he will be on is still considered "trial", though it has been used on other patients like Christopher. He will have to have Chest Ct's after each cycle to see if the drugs are effective and if need be the formula will be changed. Unfortunately there is no silver bullet for this disease so really I think what it comes down to is what Christopher believes will save his life and then all we can do is pray that this time the drugs they choose will get rid of the remaining cancer cells. Giving Christopher the most quality out of his life was a big factor in wanting to try something different, less harsh yet proven successful on many cancer patients. As most of you know, Christopher is not your typical 13 year old so I thought it was not only important but only fair to let him decide, after giving him as much information as we could, what modality he wanted to pursue so that he could feel that he was truly fighting this disease with everything he has. He did try, during the information gathering process, Traditional Chinese Medicine, but as he put it he just did not feel like something that simple and noninvasive could be successful. He wanted to go full steam ahead and do whatever surgery was necessary and then be treated systemically with Chemo. He is well aware that the side effects may be worse but as always he is standing tall and taking all of this with great strength and courage. All the rest of can do is continue to pray and support his efforts.

He arrived home today from his first Open Thoracotomy where 4 lesions were removed from his right lung...even the ones that the Dr.'s thought might not be accessible. He was in a lot of pain and has quite the war wounds but is happy to be home and much more comfortable.

It was very harrowing to say the least as the surgery lasted several hours and came with many risks. Very grateful to my pal who was there with both of us during the preop and beyond to help keep the nerves at bay!

In about another week and a half he will have his second surgery...though now, with good reason, very reluctantly so! Until then he will rest and enjoy being at home and even attempt school for a few days. (oh and course get back on track with his video games!)

I will be happy to answer any questions, I know we had many when we hit with this and there are still many more. I will most certainly let you know, once again how Christopher is doing as the battle continues to unfold.

Thanks to all for the continued thoughts and prayers.

Patty

In the Mean Time...

2010-10-24T15:54:00.000-07:00

Well I must admit it has been good living "in the meantime". Life after Chemo/Surgeries/Emergencies has been quite an adjustment for both of as we had spent so much time at the hospital. It almost seems surreal, like we had been in some sort of strange time warp since the date of his diagnosis (February '09)... almost as if time had stood still. Things at home looked as if they had been left exactly as they were, unopened mail, work desk covered with year old documents and seasonal clothes, linens never switched out...like we had to pick up where we left off. Guess that huge mental blank spot could be good old fashioned "denial", which does serve well in traumatic situations. In any case, I do apologize to those of you who have been asking about Christopher's progress and waiting for updates.

I had every intention of keeping the blog up to date with such good new as his trip to Alaska, his getting back in to a normal school routine, his being a part of the Children's Hospital Child Advisory Council and the fact that he had gone through 2 of his follow up protocol testing cancer free! ( Every three months since his treatment finished, Christopher has a full bone scan, an MRI of his right leg and a Chest CT) It is hard to say how many side effects he will have as a result of such heavy chemotherapy. He has experienced some minor ones and possibly even cardiology related complications as well as cognitive issues. I know it was tough for Chris, as crazy as it seems, to go back to "normal" life after such an intense relationship building experience with the Dr'.s, Nurses and other Oncology patients at Wolfsons, but he continues to hang tough and move forward. Enjoy the Pictures and Video!

Much Love and Peace! Patty

This is Christopher bright eyed and bushy tailed (well kind of) on his way to school! He still rides his bike every morning and with the help of a new bike does not even need to Velcro the leg to the pedal anymore! ( :
In June following his chemo protocol Chris and I had the amazing opportunity to take a 7 day Alaska Cruise! Many, Many thanks to Brandi and "Dreams Come True"! Below is on the White Hall Yukon Railway in Skagway and below that is the bi-plane tour of the Misty Fjords in Ketchikan.

In addition to traveling, going to school and playing video games Christopher went out on a limb-literally! :) and took part in a water ski even put on by Adaptive Sports. It was quite the workout but he did great and had a blast! Below is a video of that day at Victory Lake in Jacksonville.

One Year Later

2010-03-17T17:44:00.000-07:00

Chris and his friend Austin at Chris' first concert...compliments of "Dreams Come True"
...Thanks Brandi!

I can't believe almost one year ago to the day, on March 16th 2009 Christopher was admitted to Wolfson's for surgery to implant his port and begin his chemotherapy protocol. I will never forget his turning to me, at 3am and saying "mom, this is it...I am getting Chemo" as the nurse hooked up the bright red bags marked CAUTION: CHEMOTHERAPY.

He has come a long way. Today, thank God, he is home, feeling really good and going about life with the stamina and enthusiasm of an ordinary teenager. I think enduring 11 months of in-patient chemo, 3 major surgeries including the amputation of a limb, going bald and having nausea and vomiting be an everyday occurrence is anything but "ordinary"...but looking at Christopher today, somehow, amazingly he looks and acts as if life has been and is pretty normal.

On Monday he had his 3 month protocol tests, i.e. Chest CT, Bone Scan, MRI and X-ray. Though we do not have official word (his Dr. is out of town), the reports did not show any red flags and the Chest CT (the lungs are the first place this type of cancer likes to spread) showed no new lesions. So I feel safe in saying that he is cleared for this round and continuing to enjoy a cancer free life!

On March 3oth he will have his internal port removed (a minor surgery), giving him even greater freedom and relief. He will then not have to go back to the clinic for his monthly antibiotic and respiratory treatment, have the port flushed and will not have to go to the hospital should he get a fever. Again...back to being a regular ol' 13 year old!

Chris wants to write about (OK have ME write a book about) his journey and share his experience with cancer and how he dealt with all that goes with it. I know he has been an inspiration to many and hopefully between the two of us we can someday give back the support and encouragement we received this past year. The journey continues...but we believe the battle is over.

Much love and peace to you all!

Patty

Life Goes On!!

2010-02-03T20:04:00.000-08:00

Back in action!

Eric Mason, PT Clinical Director of Premier Physical Therapy in Jacksonville Beach works with Chris on stretching and strengthening the muscles in his legs.

Almost a year after Christopher's diagnosis we finally seem to be getting back to a more "normal" (used lightly) lifestyle. Thank God.

After Christopher's final round of tests on December 15th he didn't waste anytime getting to the prosthetist to pick up his new leg. This was the day before he left for California for his Christmas Vacation. He left bald and on crutches and and returned with a pretty good head of hair and the ability to walk on his own!

He had not yet had PT with the prosthetic so this was something he did on his own while in CA.

Now he goes to PT once a week to fine tune the walk as well as work on balance and strengthening the muscles both on the stump and his supporting leg. He can even get around without the leg or crutches which seemed like an impossibility months ago.

The really good news is after having to repeat an MRI for "suspicious" areas, I finally got a call from Dr. O'Connor, his surgeon at Mayo and she told me though not conclusive, she is confident that there was lack of blood supply to the marrow (in the stump) and that is why areas showed up as compromised. (She called it Bone Infarct) In addition to the initial trauma to his right leg, not to mention subsequent surgeries, his being immobile for so long had severely weakened his bones. She said he will be monitored closely but feels there is a possibility with more movement on that leg the condition may improve. On the next bone scan and MRI in March it will be much more evident as to what exactly is going on. But again, at this point she is not concerned with metastases so I am going with that! Dr. O'Connor also asked if Chris would be willing to do a video and pictures for Mayo so that other parents/children can see that life does go on after an amputation and sometimes given the severity of the disease this is the best option. He will do that next week.

In the meantime she said to let Chris do his thing. And that he is! He is riding his bike to school everyday which he picked up rather quickly. (With the help of a Velcro strap to secure the leg to the pedal!) Given his ability to work those pedals, he figured surely he could fly a plane again...and that he did! All on his own according to the instructor, and has successfully completed another hour toward his Pilot's license.

So he is off and running and looking forward to getting back to doing the things he loves.

Thanks to all of you over the past year (and you know who you are!) for the many ways you have shown such love and support.

Much Peace to you, Patty

Finally! Tests complete.

2009-12-20T17:03:00.000-08:00

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!

2009-12-04T14:43:00.001-08:00

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!!

2009-11-28T11:36:00.001-08:00

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!

2009-11-18T10:39:00.000-08:00

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

2009-11-10T18:00:00.000-08:00

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

2009-10-28T15:13:00.001-07:00

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!

2009-10-18T16:45:00.001-07:00

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!

2009-10-08T17:49:00.000-07:00

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.

2009-10-03T13:50:00.001-07:00

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!

2009-09-27T18:22:00.000-07:00

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"!

2009-09-20T17:18:00.000-07:00

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.

Fundraiser at TAP Lighting!

2009-09-17T11:25:00.000-07:00

I chose this picture for two reasons. First, I think it is a pleasant change from the all the hospital pictures, and second it was taken last year on a trip to San Diego, compliments of Tammy Packard, a very dear friend of mine that I have known nearly all my life.
Christopher has always wanted to fly planes and on this special trip Tammy and Cort surprised Chris with his first flight lesson. He flew (took off and landed 4x) a Cessna 172. A great memory for him and definitely something he will pursue when he is able!

Knowing how difficult is has been for me to manage things on my own in the past 6 months, Tammy is sponsoring a fundraiser at her business in San Diego, "TAP LIGHTING" . She is donating all proceeds to help me cover medical expenses as well as compensate for my time away from work. I had fought taking advantage of the Family Medical Leave Act, ("FMLA") though it was highly recommended by both Christopher's Dr.'s and my manager. FMLA does guarantee your job at the end of the leave but does pay you for your time away which was not an option for me considering I am a single parent and needed my income. (Not to mention, as most of those close to me know, my strong will, or stubbornness & pride actually, kept me from giving in. As the months went on and the unpredictability of this disease became unmanageable, I finally surrendered.
The company I work for has been very patient with my situation and frequent absences and encouraged me to do this by agreeing to give me a few weeks paid to start, which was a very generous offer and not at all required. Many thanks to "Nurse on Call" and more specifically my manager and friend Annah Murphy for the support and encouragement!
In any case, On October 4th Tammy, with the help of her team Cort and Jeff will be working hard to put together this event in San Diego. She is donating a lot of her inventory and an entire business day to make this happen.
Knowing that there are others that may want to support this but cannot be there she is accepting donations, to be made payable to:
Christopher Blackwell/Patricia Severino, c/o TAP Lighting, 3690 6th Avenue, San Diego, CA 92103. Her web address is http://www.taplighting.com/

I am very moved and grateful for her help and generosity. It is quite a challenge for me learning to be on the receiving end so much lately. Many people that surround me have offered their help and services to make this "journey" a little lighter.
I hope to be able to give back a fraction of all I have been blessed with these past few months.
With much love and appreciation to you all! Patty

A Quickie!

2009-09-16T16:32:00.000-07:00

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...

2009-09-05T19:50:00.000-07:00

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

2009-08-19T18:17:00.000-07:00

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!

2009-08-04T19:50:00.000-07:00

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!

2009-07-25T19:47:00.000-07:00

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...

2009-07-03T18:57:00.000-07:00

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

2009-06-28T19:31:00.000-07:00

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!

2009-06-18T09:03:00.000-07:00

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

2009-06-07T11:11:00.000-07:00

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"

2009-06-07T10:50:00.000-07:00

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

2009-05-28T19:19:00.000-07:00

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

2009-05-26T16:56:00.000-07:00

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

2009-05-26T10:56:00.000-07:00

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

2009-05-26T07:04:00.000-07:00

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

2009-05-22T14:19:00.000-07:00

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...

2009-05-21T08:36:00.000-07:00

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

2009-05-14T18:39:00.000-07:00

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

2009-05-09T17:41:00.000-07:00

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

2009-05-07T05:09:00.000-07:00

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

2009-04-28T17:35:00.000-07:00

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

2009-04-24T20:23:00.000-07:00

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

2009-04-22T19:35:00.000-07:00

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

2009-04-22T14:02:00.001-07:00

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.

2009-04-14T18:57:00.000-07:00

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

2009-04-10T19:56:00.000-07:00

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

2009-04-08T20:03:00.000-07:00

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.