I know I have been lagging on updating Ty's page. First with the most important news regarding his scans this past February.......
Praise the Lord....Ty remains NED!!! Now we wait for another 6 months for next round of scans.
Now to update regarding our consultation we had with the orthopedic surgeons at Sloan Kettering this past month. First, let me say we are EXTREMELY relieved and happy we went to get this consultation in New York. We feel both doctors ( Dr. Fabbri and Dr. Prince) have many years of experience. They both took a lot of time to explain and shared their experiences in these type of cases. We are very confident in our decision and feel Ty will receive great care from these doctors. So after our meetings and some more case conferencing.. both doctors agree Ty needs to have corrective surgery on his left leg sooner than later.
*** To give you a better understanding of what Ty is dealing with daily.... take a good look at his X-ray above taken in NY. Ty is standing completely straight.
Quite a disturbing picture right?? Also because Stanford never did an xray like this and only offered to stop the growth of his right leg.*****
The reason to do the lengthening now is because of the spine and because he has so much a difference already - 5cm/2 + inches. This is right at the edge of doing an appropriate and safe lengthening with good function of his knee and ankle and resuming sports/activity as soon as possible.
As of now Ty's plan would be:
Surgery #1: straightening the tibia bone by cutting and re-aligning it; and lengthening the tibia bone a total of 6cm; slight lengthening of his Achilles tendon (because it is already tight). Dr. Prince would try to do all of this with the internal device but cannot make any promises so the external device is possible. But he was fairly confident he could place the internal device :)This is a big surgery and he would probably be in the hospital for at least 1 week afterwards.
The lengthening would take about 75 days (between 60-90 days) from the day of surgery and Ty would need to see him every 2 weeks. He needs to do daily therapy to stretch out his knee.
Surgery #2 (just after lengthening is done ~90 days): "guided growth" of the top growth plate of the left tibia with plates and screws to prevent further worsening of the growth deformity; remove a couple of screws down by his ankle to allow more therapy and activity. This would be a smaller surgery and he would be in the hospital 2 days after surgery.
After the lengthening and second surgery are done we can go home and he can usually resume full walking by 1 month later without crutches, then 2 months later if the bone looks good....then he can usually resume sports. At some point we would have to discuss what to do about the rest of his growth. He still has another 6+ cm to grow in the other leg that we have to decide what to do. We could either stop the growth on the other leg or we could do another lengthening several years in the future. Either way he would have several years of uninterrupted activity and sports with minimal effects and minimal curvature to his spine.
So that's what my little guy is facing this summer. Yes, I know this is the best course of action and bottom line Ty needs this done as the unevenness in his legs are now affecting his spine. We already have our pre-admission surgery appointment scheduled on June 9 with his surgery date on June 11... We will be back in New York for possibly 3 months, hoping it will be only 2 though :)
Flashback to 2009, when we lived in New york for over 2 months while Ty received the 3F8 antibodies and radiation. We considered ourselves "New Yorkers" then. It wasn't that bad for us as we all remained together. But now we have our twin girls, who just turned 4 years old. We have decided not to take them with us as we will be living in the Ronald McDonald House. While the RMH is a beautiful place, it's not very practical to have 5 people in a room with only 2 twin beds and a couch :( For those of you who haven't met our Siena and Bella, they are VERY ACTIVE and quite sassy. Ummm... they are also high maintenance, can throw some serious tantrums and need to run around. The other issue is the RMH house is full of cancer kids with low immune systems and we cannot risk our little ones getting a cold and possibly infecting another cancer child. To keep them cooped up in a room is just not going to work. Ty will be needing physical therapy daily and may not be in the best mood while his little sisters are running around and he cannot. We also realize the girls will still need US as much as possible, and being away from them for possibly 3 months, is just not fair. So, Scott and I decided to split our time this summer and for the first month or so, I will be in New York with Ty while Scott stays back with twins. Then Scott can come up with Ty the last month. If it looks like we will be there the third month, I can return to be with Ty and Scott can go back to California.
Will it suck to have my family broken apart this summer?
Is this surgery the best thing for Ty right now? Absolutely!
So we will make sacrifices.... cause the end result will be so worth it!
We have many "positives" in our situation too. Those of you who don't know, Scott and I both are Probation Officers in Santa Clara County and our coworkers are pretty kick ass! We are lucky enough to work for a Department who do care about their employees... they truly do. I know we all complain about our job at times...about our co workers, what we are able to do as PO's anymore, our job overall.
But when Ty was first diagnosed and I basically left my job on that Friday May 2, 2008 not to return until almost a year later... I was covered. I continued to receive a paycheck, I was able to be assigned to a "part time" PO code while I was away ( so not to burn so many vacation hours), and the most humbling most gracious part of all??? I received OVER 2000 DONATED VACATION HOURS FROM MY PROBATION FAMILY!!! This still brings a smile on my face and am so eternally grateful to those who donated their precious vacation hours so I can care for my son and not worry about financial stuff. The good thing is I STILL HAVE OVER 1000 HOURS of vacation time that I have in a separate account that I refuse to touch... to be used only for Ty and God forbid his cancer returned. So, I am not worried about work, we got it covered :) Thank you to all my co workers who have always been so supportive.
So even though my family will be apart for a few months, it's truly nothing in the grand scheme of things.... Ty's leg has been such an issue for him and it's only getting worse. Ty has recently began complaining of back pain too... he also HATES the way his leg looks. He always says it bothers him that his knee keeps hitting his other knee. In the back of my mind, I always think if there is some other kid(s) at his school making fun of him and his leg?? He always denies it and stated he would tell me if that was the case. Oh my, heads would roll... I tell you. Yes, I have no problem checking a second grader :) Ty knows I have no problem addressing one of his peers ( in a nice but stern way). My handcuffs may fall out of my pocket and tell kids who are mean to others will go to jail! I kid I kid... haven't had to use that tactic.... yet :)
But seriously, I am the most protective mama bear and will not have Ty made fun of because of his cancer treatments...
Oops, I've digressed... I just hate this entire situation. I still can't believe how fast this is all happening especially when Stanford told us we didn't have to make a decision until he was 9 or 10 years old?? Geezus... What if we listened to them and not have seeked out another opinion?? Can you tell I am still annoyed with our orthopedic surgeon at Stanford?!?
Ty is having major surgery in 6 weeks..... 6 weeks!!!! He won't be able to hang out with his best buddies ( Ryan, Garrett, and Jorge) and his sisters. Praying he is not in a lot of pain and he continues to kick ass and recover much faster than Dr. Prince predicted :) His sisters are going to MISS him like crazy!!! Even though they argue all the time, they play so well together and he is the " peace keeper" between the twins and is truly the best big brother to them. I am going to miss him so much when I am back in California.. this will be the longest I have ever been apart from him, it's just nuts.
What does Ty think about all this?
Well, he seems to have a very positive attitude and the one question he did ask the doctor after hearing them explain everything was... " Do I need to use the mask before my surgery?" Prior to being able to lay still on his own for scans, Ty would have to use a mask which was used to administer the anesthesia to have him fall asleep. The issue was the anesthesiologist would add flavor to the mask so it would be easier for kids to use, but it backfired on Ty. He has always had an extremely sensitive nose and he hated the " flavored smells". So that was his biggest concern. Dr. Prince immediately said they could administer it through an IV, which meant a " poke" and Ty said "I'm okay with that". He just hates medical masks... At of all the things to be worried about... the mask :)
I tried to explain the process and what was going to happen to him later when we returned to California. Again, Ty took it all in and said, " Will this finally make my leg straight and will I able to run just as fast as the other kids??" I said " yes" your leg will be straight but it may be sore so we need to do daily exercises in NY. I wanted him to understand as much as he can. That he will not see his sisters for a couple of months but that mommy or daddy will always be with him. Ty was happy with this explanation and said he just wants his leg to "match" his right leg. I also let him know, we were going to do lots of fun stuff in NY before his surgery and after, as he gets stronger. I don't think Ty knows exactly what to expect because I also have no idea what to expect from this surgery and recovery.... So kinda going in blind here.... We aren't dealing with chemo or antibodies.... which we are so grateful for :)
So that's going on with my little man. I know this update was very lengthy and may have jumped around a few times. Sorry about that. So if I appear preoccupied at work... my mind is honestly still processing it all. It is a little surreal knowing Ty is going in for major surgery to correct the deformity in his leg because of what the cancer treatments he needed to save his life did. IF we had better treatments in the first place, we wouldn't be going through this crap now. Our kids deserve better.
I will start updating on this page and on FB much more often... as we are getting ready to prepare to live in New York and of course how his surgery and recovery goes.
Thank you all for your continued prayers, postivie thoughts and support!! Team TY is asking for special prayers and positive thoughts to get through these next few months!
With Much Hope,