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.