Second Chemo Cycle Complete

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

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

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

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!

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.

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...

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

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!!

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