Friday, August 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


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.

Tuesday, December 9, 2014

One Year Tribute

December 09, 2013 is a day I will never forget.  It started out as a normal Monday morning.  I arrived at work around 7:30 AM as usual and began my routine for the day.  Shortly there after things went to hell in a hand basket as I received a panicked call from Meghan Hampel that Evan was complaining that his right arm hurt really bad.  The family was at  a church event Sunday night and during some normal rough housing that boys do, his brother had accidentally tripped Evan and he had fallen on his right arm.  I told her that if it was bothering him that badly they needed to take him to an emergency room for an evaluation to see if he had broken a bone or just sprained something.  I knew we had an excellent pediatric department at one of the local hospitals, Health Park here in Fort Myers.  After a few hours I received a call from Meghan at the hospital and she had some very bad news; not only was his upper arm broken, it appeared that there was a tumor in the bone that lead up to Evan breaking it so easily.  They thought it was a cancer called Osteosarcoma but they needed to do a biopsy of the bone to determine.
Anyone following this journey knows that Evan has been on a journey in 2014 fighting the beast known as Osteosarcoma and so far this journey has been successful.  It was hard fought and had moments of panic and fright as well as joyous occasions.  We have more to accomplish as Evan grows but as long as we can keep the beast from returning, the future operations necessary to maintain a right arm that is as normal as possible will seem somewhat unremarkable.

A trip on Friday to the Orthopedic Oncology surgeon went very well, the lower portion of the allograft is starting to bone over.  Evan is producing bone cells again since he ceased chemo.  One area of worry is the top portion of the allograft where it is attached to the upper ball portion.  This area does not contain a growth plate and there are no new cells growing there.  The screws that hold the allograft to the ball will eventually loosen to the point that surgical intervention will be necessary.  There is already some loosing happening and we will have to keep a close eye on it.  Other than that, he has better than normal movement in the arm and it is expected that he will continue to gain strength and mobility.  Our hope is a few more years of growth and we can replace the allograft with an expandable titanium rod which will be permanent.

I want to thank all the people who have helped Evan during this journey as well as all the people following his journey through this blog and on Facebook.  The outpouring of concern and love has helped the entire family to overcome this frighting disease.  We know that cancer can return at anytime so we must be vigilant and follow the scanning regiment closely.  Evan is scheduled in early January for full scans and I will report the findings when we receive them.

Everyone have a happy, healthy and merry Christmas!  Our hope is 2015 will be a booster year for us and everyone we know!

Tuesday, November 4, 2014


It has been almost two months since my last post and most of you know by now that the testing needed to be done on Evan has been completed.  Evan has been declared NED and is currently disease free!  I waited for some time before posting to the blog to see if anything would arise to negate this great news and so far there hasn't been.  Evan is going to school, growing hair and returning to a life that is normal for a 5 year old.  I must say that all of this ended abruptly and the roller coaster just stopped and you can get off on the happy side  of life; it is a little numbing to the mind to say the least.

Evan will undergo testing periodically to make sure the beast remains at bay and I will report whenever he has the tests.  Happily, I can state that the posts to this blog will begin to diminish, something I never thought would happen.  I will post pictures of his life as normal when I can.

I leave you with a montage of his life since 2013 to current.  Thank you all for following this tremendous journey!


Friday, September 12, 2014


The Chemo is OVER!  Evan had his second to last hospital stay over the labor day weekend and was discharged on Monday 09/01/2014.  His last round was started on 09/04/2014 and he was discharged on 09/08/2014.  He had blood testing yesterday 09/11/2014 and his ANC was excellent at 2067 so he is on his way to having normal white counts again.  He is currently scheduled to have a bone scan (dexa) and a series of x-rays on 09/24/2014 and will have a sedated MRI and Cat scan on 09/25/2014.  These tests will determine if the Osteo sarcoma has been chased away or has returned in another section of bone.  The tests will also determine if there has been any Mets to his lungs or other body parts.  This will put a milestone in his chart that he is NED (no evidence of disease) but he will need to be scanned on a regular basis for at least 5 years as the testing will not pick up very very small growths.  We are very optimistic that he will have clear scans but the waiting for the tests and results are very nerve wracking.

In August we traveled to Tampa to see the Ortho Doctor that did Evans' limb salvage.  He had x-rays of the arm to see if the screws, plates and bone graft were doing.  This was a happy report as the hardware is where it is supposed to be and there is even a very little bit of growth over the graft near the elbow.  This process is expected to accelerate once he stops the chemo completely and since the cessation of chemo has happened he should begin the process.  The Doctor also needed to determine if Evan needed PT so he asked Evan to move his arm up laterally away from  his body as well a up out in front of his body.  The expectation was for around 35 to 40 degrees and he achieved 75 degrees!  There will be no need for PT.  Evan then decided to show the Doctor he could do even better and grabbed his right hand with his left and lifted his right arm above his head.  The Doctor was impressed and Meghan was astounded.  We will see the Doctor again in December.

Evan started school on time and is doing really well.  He will miss time when he is hospitalized or in clinic for testing.  The school and hospital worked out a plan for him that makes sure he is not penalized for time out and that he receives tutoring when hospitalized.  He likes school and actually drags himself to school the very next day after hospitalization.  He is quite the tired puppy when he arrives home.

On a very sad note, a fine young lady that befriended Evan and Meghan in the hospital and had Osteo sarcoma has earned her angel wings.  Wendy was the type of person that would make Evan feel comfortable when in hospital and would even get in bed with him to comfort him.  They shared a special bond.  Wendy was 27 and fought the disease for at least 3 years.  Upon discovery she had Mets to the lungs, had leg salvage surgery and a few lung surgeries.  She was traveling to Moffit in Tampa for a study drug which was inhaled cisplatin but the drug didn't work as designed and she developed more areas in her lung.  She had more lung surgery in a specialty hospital in the Chicago area and returned to Fort Myers on 08/10/2014.  She was at all times determined to beat the beast.  I was at the hospital picking up Evan when her soul mate Shell was in Evans' room.  This was the first time I had met Shell (other than through social media) and Shell told me that Wendy really wanted to meet me as again we only knew each other through social media.  We were on our way down the hall to her room when the ICU team arrived and for privacy reasons I decided to not continue to her room.  I took Meghan and Evan home and found out that on Monday Wendy had passed away.  It was very sad that I didn't get to meet her but I will always remember her as the vibrant, tough young woman that took the time, even though she was hurting and battling her own disease, to nurture and ease the burden of a fellow "Osteoite".  She did this for many other people around the US that had Osteo sarcoma through blogs and Facebook Osteo pages.  There was a well attended memorial service for Wendy on 08/16/2014 that was touching.  On 09/02/2014 Chick-fila where Wendy worked held a fund raiser for the new wing being built at Health Park for ONCOLOGY PEDS department.  This was an event that Wendy had been working on putting together and the event went on as planned in her honor.  The event raised well over 5k for the hospital, a fine testimonial of all the people locally that knew of or about Wendy.

I will report on the findings of the testing that is about to take place.  I sincerely hope that we can all celebrate shortly.

Friday, August 8, 2014


It has been awhile since my last post and as stated earlier no news is good news.  We are nearing the end of Chemo treatments for Evan and there does seem to be a light at the end of the tunnel and I am expectantly optimistic that it is not a train.

Evan is currently in the hospital for his LAST round of "red devil" and if all goes well he will be released on Saturday night.  He will then have about 10 days off and have two straight sessions of Mexotrexate for the final rounds.  Evan will then have a series of tests to determine if the Osteosarcoma has stayed away or come back to play.  I think, for me this is the most stressful time as until the tests are done and read there is no way of knowing by looking at Evan if he is truly free of the disease.  He is well, thriving and surprising his pediatrician on his overall growth.  The pediatrician told Meghan that he is of average height and weight for his age and this is not expected for a cancer patient.  Hopefully this is a positive sign that we have indeed beaten the beast.  We are well aware of the fact that the cancer can recur at anytime and the first five years are the ones to be most watched.  Evan will probably be scanned every six months for those first five years to make sure that he stays cancer free. 
He will start school when everyone else does in a few weeks but when hospitalized he will be tutored by a teacher on staff  at the hospital.  Meghan had to make arrangements to alert the school district when he is under treatment so his absence from regular school days is not counted against him.  In this district after a certain number of days the student is not allowed to continue on to the next grade but must repeat the grade and we are talking kindergarten here.  Hopefully the first month will be the only one messed up and the rest will be normal.
Since I last wrote, the bad port was successfully removed and a new one cell port was re-implanted.  This one is in the middle of his chest and the tube in in the Vena Cava in his neck.  He was able to complete the entire round of red devil and mexothrxate but it took a few extra weeks as he was not able to meet counts on a few occasions.  This was not unexpected and in fact he is meeting counts on a more regular basis that most kids, another positive.

I will post again if we have an event and especially will post at the end of Chemo.  I appreciated all who have followed this journey; one that I hope is coming to a close.

Friday, June 20, 2014


Yesterday turned out to be a three ring circus for Evan and Meghan.  Evan was due to start his third round of chemo post limb salvage surgery but it didn't happen for a variety of reasons.  I picked them up at their home on Thursday and delivered them and the giraffes to the clinic.  Meghan let me know by text a little later that they were going to do a heart scan first to make sure that there were no surprises from the last study.  This is standard procedure for this round of chemo as they want to make sure his heart is ready to take on the red devil.  Protocol calls for the cessation of white lightning going forward and hopefully he is finished with this nasty drug.  It will return to his regimen if he has any further cancer growth or mets to the lungs.  We found out later that his scan was essentially similar to the one he had just before beginning chemo a major plus.

After the scan was complete it was off to the clinic to have his port accessed and blood drawn to determine ANC levels and to begin hydration necessary to begin the administration of red devil.  Prior to access his port must be flushed of the heparin that is in the port.  He has a dual port and each cup in the port must be flushed.  The flushing of the upper port went as planned but when the nurse attempted to flush the bottom port Evan was in extreme discomfort and let that discomfort be known with a scream Meghan had not heard before.  Meghan asked the nurse to discontinue the flush and seek out the Doctor.  The Doctor ordered him to the cath lab to check port functionality.  It was discovered by the radiologist that the upper port was working properly but the bottom port was fractured.  In a properly functioning port the dye they inject to study the port will flow from the port through the tube that goes from port to vein.  The upper one did just that but the bottom one dispersed the dye immediately around the outside of the port instead of delivering through the tube to the vein.  It was extremely fortunate that this was discovered prior to the administration of red devil as this chemo drug is extremely caustic and had it been routed through to his chest wall instead of into his vein the result would have been devastating to him.  The flushing drug and the dye were routed to his chest wall but all this will do is cause him some swelling and soreness in the area which will diminish over a few days, certainly not life threatening.

Blood was drawn from the top port prior to Evan going to the dye testing of his port and his ANC was 450 below the threshold for having chemo done that day.  The chemo was not going to happen anyway which in retrospect was a very good thing.  His white count was only 3 and red cells were 8.  We met with the surgeon who is going to take out the bad port in its entirety and replace it with a single port as the dual is no longer needed.  The port tube will be placed in a vein in his neck and the cup will be placed most likely mid chest.  The final placement will be determined by the surgeon during the procedure.  We originally thought the surgery would take place on Friday but the surgeon wanted to wait until Tuesday.  I believe that she wanted his counts to be a little higher and felt that the risk of having a piece of the port break off and enter his blood stream (another disaster) was a lesser evil compared to low counts that could encourage unnecessary bleeding and elevated risk of infection.  He will return to clinic on Monday to have blood workup to make sure his counts are good enough for surgery to take place.

  I loaded everyone in the car and took them home. Evan is resting comfortably and is aware of what needs to happen to the port.  He is handling this setback well and is looking forward to having the last two rounds of chemo (6 individual weeks with breaks in between) and hopefully clear scans at the end.  I will report on Tuesday on how the surgery went and earlier if anything happens.