Quiet Week 3/26/17

Robbie had a quiet week. We have all been fighting colds. He heard back from his interview a couple times this week  He will talk to them again next week.  He doesn’t know if he has the job yet, but we are crossing our fingers that it works out for him.  I can’t imagine him in San Francisco , but he is very excited!

His leg is starting to bend more again.  They don’t feel he needs PT anymore, but I’m not sure.  He seems to do better with regular  PT.

Have a great week!

San Fransico Trip 3/15/17

Robbie spent the weekend in San Francisco for an interview.  We paid for Lynn to fly with him to help because of his leg. They both had a wonderful time. Robbie got to see a couple of his friends too.  He had fun taking a trip that wasn’t cancer related! The kids sent me pictures through Snapchat with captions. 

Current Leg Options 3-9-17

We need to decide what to do for Robbie’s leg. It is very difficult to know what is best.

The Problem: He has a knee contracture in his right leg due to extensive scar tissue from his leg surgery. This makes it impossible for him to straighten his leg, so it is like walking on a much shorter leg.  This is hard on his body as his entire body shifts back and forth when he walks, which is exhausting. He is getting around well considering and is slowly building up his endurance.

Leg Options:
Option 1: Leave his leg as it is and continue working out, putting weights on his bad leg, stretching it, and wear a dynamic leg brace to put constant pressure on it.
Problem with option 1: This is what he has done this for over a year now with little progress with his knee contracture. Major progress in what he is able to do.

Option 2: Leg Surgery. This would be invasive leg surgery with a similar length scar on the underside of his leg to remove the scar tissue that is holding his leg. The surgeon is very good and we trust him.
Problems with option 2: The scar tissue is wrapped around his nerves and his major leg artery. Any of those could get cut in surgery causing more nerve damage including loosing the little feeling he has in his leg and/or causing a drop foot. There is also a risk of infecting his prosthetic leg that is inside his leg. There is a strong risk of the scar tissue coming back too. It would take intense PT for an extended time to help avoid the growth of new scar tissue. There would be a lot of pain after surgery just like his other leg surgeries only the recovery would be faster because he isn’t on chemo.

Finally, if the surgery worked, he would have no limitations and could return to basically a normal life. This is why I would even consider the surgery.

Advice: If anyone has any advice or experience in this area, we would appreciate if you would contact us. We don’t have to rush into anything.

9 Month Scans are Clear!! 3-6-17

Robbie got fantastic news today at his nine month check up. The scans and x-rays continue to show “No Evidence of Disease” NED.  It was great to see his doctors and nurses. They are so good to Robbie. We are so thankful!! He goes back again in June. Each time is so frightening. Thank you for all the prayers.

His white blood count and platelets are still lower than normal, but it might be his new normal.

Next to figure out what to do for his leg.

Saturday 3-4-17

 Robbie had a great week. We finally found some clothes that fit. He spent all day Friday in Tulsa at Navico and got to see all his coworkers and his boss. They are so good to him and he enjoys working for them.

I’m getting us ready for our trip to Houston.  We plan to leave early in the morning. We are praying for good scans this coming week. The suitcases are out and the clothes are clean, but I can’t seem to make myself to pack for the trip.

Something I didn’t understand until we faced osteosarcoma is that you don’t ever feel safe after your child has cancer.  I’ll post as soon as we know anything this week.

Thank you for all your support.