Friday, August 28, 2015

08/28/2015

The posts on Evan have become sporadic as there is nothing to report, a blessing for him and our family.  He continues to grow and remain healthy and happy.
 Last year we were unable to take a vacation (Sherie and I) as even though the Chemo treatments were winding down the thought of being somewhere other than within 25 minutes of him prevented us from taking a trip.  This year we took all 4 grandchildren on a car trip to visit the great grandparents in Boyertown Pennsylvania and I can tell you the kids had a blast (That is 1200 miles one way).  It was heart warming to see Ethan, Eli, Evan and Elaina having fun together and being able to spend time with their Ggrand parents!

Two weeks ago Evan had his 90 day appointment with his Chemo Oncologist and had X-rays and port flush.  His report card from the Oncologist was A+ and on September 17th he will have a sedated CT scan with contrast for his 1 year check up.  At that time a decision will be made to leave his port in place or remove it.  Hopefully his scans will be clean and we can get rid of 1 more symbol of this evil disease.

Today we had an appointment with the Orthopedic Oncologist in Tampa FL and the visit also went well.  The X-rays revealed that as expected the allograft is deteriorating at the upper end of the graft.  This is a normal happening with the graft as there isn't an area of bone growth medium  If you remember, the head of the humerus had to be almost entirely removed in order to obtain good margins and that wiped out the growth plate.  The screws are beginning to loosen and a phenomenon known as re-absorption is occurring.  When re-absorption occurs, the body absorbs/dissolves the allograft.  This would be worrisome because of the length of the natural bone attached to the elbow may not be long enough, but the Doctor was able to show us that this area of bone had grown at least 1CM since the surgery (that means that in about 1.5 years and through chemo his bone grew).  The Doctor is going to send the new X-rays to the engineers in the UK that custom make the expandable titanium rod to see if they can design one that will sufficiently fit in the lower portion of the natural humerus.  If they can arrive at a satisfactory model we will proceed with the procedure.  The Doctor feels confident they will be able to do so.  Once this procedure is done, it will be the last barring any accidents.  The titanium rod will be sufficient in length to carry him through adulthood. The engineering, design and production will take months so we are being proactive and have a tentative ETA for surgery in early to mid 2016.

We think that overall things are progressing very well and that hopefully the outcome will be a lasting one.  Our family wishes to thank everyone who has been following this amazing story of such a brave young man.  Your wishes, comments and prayers are read and heard.

 

Saturday, April 25, 2015

04/25/2015

Yesterday we visited the outpatient clinic for All Children's Hospital in Tampa so the Orthopedic Surgeon could evaluate Evan's progress.  X-rays were taken and copies were given to me for archiving.  The staff at the clinic are very nice and the x-ray technician actually remembers us.

Evan's right arm is stable with the plates and screws firmly attached.  He has a better than expected range of motion and virtually no pain or tenderness.  He has full feeling in the arm demonstrating no resultant nerve damage.  He continues to impress the surgeon.

Evan had stated to Meghan that he feels his right arm is now shorter than his left but the surgeon was able to show us that the difference if any is miniscule and it must be the way Evan uses the arm as opposed to any anatomical differences.

The surgeon still has concern for the upper portion of the ball of the humerus as there is no growth plate there.  The screws that attach the donated cadaver bone are still firmly in place and the "halo" effect has not changed from four months ago.  The halo effect is caused by the loosing of the screws because there is no bone growth and as the ball deteriorates the screws will loosen resulting in the need for surgical intervention.

One very positive item in saving the upper portion of the ball is that it engages and stimulates the glenoid to grow with Evan.  The glenoid is the socket in which the ball is attached and allows Evan the movement he has which as stated earlier is better than expected.  The lower portion of the humerus by the elbow has totally healed with signification bone attachment to the cadaver bone.

Evan has had total regrowth of his hair and has had two haircuts since cessation of Chemo.  He has also gained a few pounds and looks really healthy.  His port is flushed every month and we hope to have that removed at the one year mark since end of Chemo.  He has had two CT scans with contrast that demonstrate that he is a NERD.  The Oncologist is so impressed with his progress that he is delaying further CT scans until there is a concern or year marks.  The CT scans have a fairly good dose of radiation and there must be a balance in exposure so there is no further encouragement of cancer cells.  Continued blood work will be the norm looking for a reason to do a CT scan.

It is totally amazing to me that his surgery was on 03/21/2014 and one year and one month later he is in a totally different position; one of a little boy finally returning to a normal childhood.  He is forever changed because of what has occurred but I feel that the end results will be positive for him and not negative due to family support.

So I know that I haven't updated the blog in awhile but as the saying goes, "no news is good news" certainly holds true here.  I will update when we have significant milestones to report.