Brody doing well

As we have mentioned previously, Brody has finished what is his hopefully his last chemo ever.  He will have a CT scan in a couple weeks to confirm all looks good.  After that he will have his port removed and will continue on some of his oral medications for awhile (2 to 6 months) until he his little body has fully recovered from all the chemo he has received.  Brody will also be going through some physical therapy to help him walk normally again.  During his surgeries, he suffered some nerve damage to some of the nerves that control the ability to raise his foot.  If he has leg and foot stretched out and you ask him to pull his toes towards his face or if you hover your hand above his foot and ask him to raise his foot to touch your hand, he is unable to do so.  He has a condition referred to as "foot drop."  It is just in his left foot.  His right foot is ok but his neurologist stated that there is minor damage in the right foot as well (not complete range of movement but functional).  Brody can still walk and run and play.  It has not really slowed him down.  He has managed to adapt to the situation.  Some of the chemo drugs that Brody had to take also cause nerve damage.  So this was further exacerbating the situation.  Now that he is finished with chemo, his neurologist feels his nerve function will continue to improve rather than cycling between improving and regressing as he has been these last several months.  We have been doing exercises (physical therapy) at home with Brody for a few months now that helps to keep Brody's muscles range of movement working so that one day when his nerve function comes back his range of movement won't be limited due to the muscles in his lower calf and heel not being stretched and long enough for full range of movement.  We did these exercises for several weeks with Brody before he got fitted for a brace called an "AFO."  This brace holds his foot up rather than dropped.  He got to pick-out what style he wanted for the brace.  He picked a yellow brace with several cars and trucks on it and a red light on the back of it that illuminates when he's walking.  The plan originally was for him to wear this brace all the time once he got it.  But turned out that it really started to hurt and ache after he wore it for a few hours.  So we tried to have him wear it for a few hours and then take it off for a few and then put it back again.  He got to where he could sleep with it on for most of the night.  Then we had a follow-up with his neurologist.  We decided after discussing that he was not able to wear the AFO all day yet that maybe doing a series of casting would help Brody stretch out the muscles etc faster than periodic wearing of the AFO and make it so that he would be much more comfortable with the AFO sooner.  So Brody got his first cast on last Monday (the same day as his last chemo).  It is a regular blue cast.  Looks like he has a broken leg.  The cast was put on so that his foot is raised slightly rather than dropped like he usually has it. It does not pull it up as much as his AFO yet.  He will have this first cast removed on Tuesday and a new one will also be put on Tuesday which he will wear for a week.  The cast he will have put on Tuesday will raise his foot up farther than the one he has on right now.  He will keep getting casts removed and new one put on til we get him to where he gets better range to pull his foot up toward his face if he were lying down. Once that range is back from the casting, he will be able to wear the AFO hopefully all the time without it hurting.  Eventually, the hope is that his nerves will heal and he will no longer need the brace and will walk normally without it.  It is expected to be several months before this happens but likely within the next year.  It has been amazing how well Brody has adapted to his cast.  It runs and plays like nothing is different at all.  Kids truely are resilient. 

 

We are all looking forward to lots of fun activities and trips we have planned over the next several months.  There are so many things we want to do that we were not able to do when Brody was going through chemo.  We'll be sure to post pics and videos of us all enjoying some of these things.  This next year I really just want to focus on spending time together all as a family.  Time goes by so fast and kids just grow up too fast.  Before Brody was diagnosed I was working a lot of hours on building a new business, had just started a new teaching position at the University of Findlay College of Pharmacy, and was working part-time as pharmacist at Heartland HealthCare Services.  I was certainly working full-time plus,  plus between them all and rarely had much time with my family.  If I look for something good to come from Brody's diagnosis, I would certainly say that it has forced me to realign my priorities.  My family most certainly comes first, and really, it always has, but in the past I would often put in a lot of hours working and just planned on being able to spend more time with my family later.  Unfortunately there is not always a later.  None of us really know what is gonna happen from one day to the next.  Making sure I make time for family-time on a regular ongoing basis is now a normal part of my schedule planning.  There will still always be work to be done.  And really, most of the time, it really can wait.  Much of my work-time lately for my own business has been spent on training an Office Manager and setting up things so that if I want or need to take an extended time away from the business myself, things will still function just fine while I am away.  I still have a few more things to get in place before this will be the case but very soon I should be able to be away from the business for an extended period of time if I need or want to.  I was very excited about my new job teaching with the University of Findlay, College of Pharmacy.  However, after Brody's diagnosis I was not able to work as many hours as this position would require.  The University was kind enough to offer me a teaching position at a future date whenever I was ready.  However, I do not think that I would be able to dedicate the time to this venture for quite some time.  Right now, nothing makes me happier than time with my family.  Although I do enjoy teaching, there simply aren't enough hours in the day at this point.  My goal is to work as few hours as I need to work to help pay the bills.  I have been very fortunate that I have a very flexible job as a pharmacist for Heartland Healthcare Services as far as scheduling goes.  Everyone at this job has been extremely supportive of our situation and have allowed me to work pretty much whenever I can.  In addition, when Brody was first diagnosed several of my fellow co-workers donated vacation time or sick hours so that I would still receive a paycheck when Brody was first diagnosed and in the ICU and I was unable to work.  So many folks stepped up and did this that we still received a check from Heartland Healthcare Services through June (til after Brody healed from his major surgery to remove the tumor).  This helped us tremendously.  The support from everyone over this past year has just been absolutely amazing!  We are very lucky to have such wonderful friends, family, co-workers, and employers (and even folks we don't know praying for us). 

 

We will undoubtedly be very anxious for each of Brody's upcoming scans.  Unfortunately, rhabdomyosarcoma has a very high recurrence rate.  Overall survival is much lower following a recurrence.  Brody will likely get a CT scan every 3 months this next year and then every 6 months the second year and then once a year.  The longer we go without a recurrence, the less likely the next scan will show a recurrence.  His next scan after the one in a couple of weeks should be right after we get back from his Make-a-Wish trip to Disney in Florida.  Then his next one after that would be right after we plan to take a trip out west (and to California to visit family there).  Once Brody makes it five years without a recurrence, he will be considered cured of this cancer.  He will still continue to get lots of scans and tests at least once a year throughout his life though.  The chemo and radiation he has received increases his risk for other cancers. 

 

Again thank you to everyone for all of your support.  Don't know what we'd do without all of you.