Wrapped up Round 13...14 coming up this week!

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"!

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.

A Quickie!

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...

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