4/2/2016

Well the new titanium rod is in place!  Evan was operated on to remove the cadaver implant and place the new expandable rod on Friday 3/25/2016.  We needed to be at All Children's Hospital by 6:30 AM for admission and Pre-op with an expected surgery time of 8:30.  We left Fort Myers about 4:00 AM and arrived around 6:00 AM.  Evan was understandably nervous as he was well aware of what was about to happen to him.

The pre-op was going fine just as soon as we got the operating gurney out of the room.  Evan did not want to see that at all.  He was cooperative and eventually we gave him a nice cocktail of feel good drugs to get him further in the mood.  His Doctor and Anesthesiologist were both in and the good thing with pain management this time is the Anesthesiologist was able to place the nerve block for as long as necessary instead of just a few hours
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Prior to the commencement of surgery, Meghan was presented with a 7 page document from John Hopkins which All Children's is a part of.  It detailed how the new titanium rod was not FDA approved and the FDA had granted an allowance based on compassionate use.  This is a term the FDA uses when a non approved item would be of a better benefit to a patient even thought it is against the rules.  Evan qualified based on the fact that the other alternative would have been amputation. Stanmore the manufacturer of the device is based in the UK and I believe has been working with the FDA to obtain approval for  device use in the US.  Evan would be the third US approved implantation.  We know of one other patient with the device, her implant was done 3 years ago and involves not only the humerus but a full elbow.  I can tell you that she is doing very well with the device and had the procedure done at All children's with the Moffit team.  There are only 75 total implants done world wide prior to Evan's surgery.

The document went on to describe that the cost of the implant would be determined later and that there may or may not be a fee or co-pay.  The hospital may or may not bill insurance and that she by signing agreed that John Hopkins did not compensate the family in anyway for the device implantation.  The document contained an IRB number which I immediately knew that the device was part of an ongoing study.  The IRB (internal review board) is an independent  group that are advocates for patients and watch over physicians and hospitals when medications or devices or procedures are performed on patients when those items are still not approved by the FDA.  This board requires investigators (hospitals and physician) to regularly report on the device and the patient.   The FDA then reviews how well the device, etc. performed over a set period of time and will approve or disprove based on the performance.  In medications, if the medications caused severe reactions in a large percentage of patients it would not be approved.  In Evan's case, I believe he will be followed for many many years to see if the device performs as expected.  I also think that this is exciting as one of the youngest patients to have the implant will assist in future determination of acceptance by the FDA.  I have experience with the IRB as at my work, my physician has participated in several studies related to eye medications and surgical procedures.

The surgery was expected to take approximately 6 hours and ended up at around 7 hours.  the extra hour was needed to place the catheter for the nerve block so in reality the surgery did take 6 hours.  We were apprised of the progress of the procedure at about 1.5 hour levels.  Eventually we were called back to the conference room for a briefing with the Doctor.  He told us all went extremely well and that Evan had tolerated the surgery and anesthesia as expected.  We discussed how if he was doing well with pain management we could bring him home as early as Sunday with Monday being the most likely day for discharge.  He went over the pictures taken during the procedure and sent me three of them for my collection.  I am amazed at how complex this procedure was and the skill demonstrated by the Doctor.  I believe Evan has a great chance for a successful recovery and a range of motion beyond expectations.  He scar will be minimal and more of a straight line because the stitches are internal and he used Dermabond adhesive to seal the skin together.

Evan's recovery and pain management had its ups and downs but all in all he did very well.  As expected Saturday was very tough with pain management but by Sunday there was a different boy in the bed that was much better and tolerant.  Evan was able to move his hand and wrist almost immediately after surgery and noted a numb thumb sensation.  We expect the numbness to subside as this is a result of manipulation of nerves responsible for hand movement.  We were able to transition off the nerve block Sunday morning and by 6:30 PM we were on our way back home, a very nice Easter present.

Evan will have to have a shoulder immobilizer sling for 6 weeks to keep him from shoulder adduction which is to move the arm away from the body kind of like a chicken wing movement.  The reason for this immobilization is to allow for the muscles and tendons that were either stitched or placed around the new implant time to heal/scar in before movement.  The device was wrapped in a goretex like material to allow muscle to scar onto it.  He is to continue to move his elbow up and down and to move the wrist and flex the fingers.  This brace was designed and put on him early on Monday and he is tolerating the brace well.

Evan has a 2 week post-op appointment in Tampa with the Doctor on Friday 4/8/2016.  I will post on his progress after the visit.

02/14/2016

Since last post things have been almost boring with little to report on. Evan has been growing and going to school and doing well in school. He had a routine X-Ray scheduled here in Fort Myers on February 3 of his arm that was to be sent to the UK for final determination of his new expandable titanium rod.  The X-Ray was anything but normal. Meghan noticed immediately that the allograft was fractured about mid way up the bone. Of course all kinds of panic set in and it took a call from DR. B to alleviate any fears. He ordered a kind of brace for the arm to keep it protected until the rod arrived from the UK. When he left the place custom fitting the device he was in a bit of pain and the doctor had Meghan loosen the straps which helped. For additional support he had Evan wear the original sling he wore right after his first operation. The doctor wanted to see him so an appointment was made for Friday the 12th.
There were more X-rays taken and these were a little different than the Fort Myers pictures. All in all I believe the doctor wanted to see, feel and determine his comfort and motion. He was well satisfied as Evan was not in pain and had a very good range of motion. There was a new fellow there and I could tell by his expressions that Evan should not have the range of motion he has given the state of the allograft. 
There will be no further action for Evan until the rod arrives from the UK and the best estimate is 6 to 8 weeks. It could be longer as there could be production delays. The rod also must go through customs which was a surprise as I thought a medical device would be exempt; weird.
So unless something odd happens, the next blog will occur when we begin the scheduling process.

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.

 

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.

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!

11/04/2014

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!

 

09/12/2014

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.

08/08/2014

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.

06/20/2014

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.

I     

05/30/2014

Evan went through his first leg of the second round of chemo over a week ago and did fairly well.  This leg is the nasty red devil and white lightning and usually causes him rounds of vomiting and little appetite.  It wasn't so this time as the doctors and nursing staff decided to give him Marinol for the nausea since he has demonstrated ability to swallow pills.  Marinol is a synthetic marijuana and is given to cancer patients to suppress nausea and stimulate appetite. It is not available in liquid or injection form and this is why he has not had this drug to date.  This drug was a miracle to him as he was actually hungry throughout the duration of the administration of the chemo.  He was not nauseous and he actually was up and about as if the chemo was not taking place.  He was obviously "high" and was dealing with the munchies but it was a relief to see him dealing with the chemo is such a different way.  The chemo drip lasts for 48 hours and was over on Saturday evening and he actually was discharged immediately afterwards.  I usually don't pick him up until Sunday or Monday as he is kept for observation due to the vomiting episodes.  I ask all persons reading this in Florida to go and vote for the amendment to legalize marijuana for medical use in November and to ask people living in other states that have not yet decided to legalize marijuana for medial purposes to support the legalization if it should arise in your state.  Sick people that could benefit from marijuana usage should be able to have this drug legally.

We were expecting Evan to have good ANC and white and red counts due to the great response he had to the chemo because of the Marinol use; we were quite wrong.  Evan needed to have a transfusion on Friday 05/23/2014 due to his red count being so low and platelets on Tuesday 05/27/2014 as the platelet count had tanked as well.  His ANC even with the neupogen injections was 13 dangerously unacceptable, but there was nothing to do but wait until his body begins to produce baby white cells.  On Tuesday Meghan was given more neupogen to give to Evan to assist in stimulating his white cell production.  She mentioned to me that he was in quite a bit of pain when she administered the injection and we both felt it was due to the number of injections currently.  On Wednesday Meghan sent a text to me stating (somewhat in a panic) that the syringe seemed to have too much neupogen in it.  She remembered that the amount should have been much lower in the syringe and she stopped giving the injection at about the half way mark.  I insisted she contact the clinic even though it was after hours and it was confirmed that the amount in the syringe was indeed about three times what it should have been!  He was supposed to be receiving .33cc of neupogen and he had received 1cc instead.  The nurse assured her that this error was not going to cause any ill affects but to come to the clinic on Thursday for blood counts instead of Friday. Meghan took him to the clinic on Thursday and his counts were much better; his ANC levels were about 1200, not great but out of the danger zone.  The doctor on duty was surprised to see Evan there a day early and inquired as to why and when he found out what had happened, he took the remaining syringes and quickly marched to the pharmacy where I am sure there was quite a candid conversation.  The pharmacist responsible for the error referred to an older order from March that did direct for 1cc of neupogen because of the impending bone removal at All Children's hospital.  There was a newer order for the return to .33cc that he failed to see.  The doctor was impressed that Meghan had caught the error and she told him she had a good teacher who had impressed upon her to check everything as a backup.

Evan will return to the clinic on Monday on 06/02/2014 for further blood counts and will have the second leg of the second round started on Thursday 06/05/2014 if his ANC stays above 500.  I will write next week and let you know how he is doing.    

5/12/2014

Yesterday marked the end of round 1 for Evan's post  chemo treatment schedule.  He did a great job of clearing the methotrexate by early Sunday morning but his release from the hospital was delayed by 5 hours because of an overly cautious Doctor.  Even though the delay was frustrating it was in Evan's best interest to make sure the levels were low enough to ensure he would not have any problems at home.  Evan was still able to enjoy the rest of Sunday afternoon with his brothers, sister and dad and I am sure they had a great time celebrating Mothers day with everyone there instead of in different places.

There will be another 3 full rounds of Chemo at the very least before Evan can be determined NED and we are hoping that the holidays will be another milestone in Evan's journey that allows him to be free of the cancer.  We are all aware that we must be vigilant afterwards and have frequent scans to make sure that the cancer stays away and be ready to fight aggressively should it return.

After I picked up Meghan, Evan and Matthew on Sunday we took a little detour to the Ronald McDonald house which in on the Health Park Campus.  I have been donating food and other necessities to the house over the past few weeks as a way of paying it forward to others in similar situations that are not as fortunate as we are to be so close to the hospital.  Ronald McDonald houses across the country make sure that parents of hospitalized children have a safe place to stay during their stay in the hospital and they do it for a nominal fee or gratis if the parents simply cannot afford to pay.  The house needs donations in order to continue to operate and readily accepts products to assist them in delivery of services. We had Evan in full superhero costume when we made our delivery and the staff gave him a huge welcome to the house.  He was given a full tour of the facilities and made to feel special for taking the time to help others. It was a very good time for all.

When Evan was in hospital for the first round of Mexotrexate we all had a small scare about his surgery site.  Evan rarely complains about having pain or discomfort and when a nurse gave a gentle squeeze to the middle of his right upper arm, not only did he wince in pain but he actually gave out a good vocal disapproval of the squeeze.  An immediate X-ray of the area was ordered and during the wait for the X-ray to be taken and read there was considerable concern.  This is where several things could be going wrong including: fracture of the allograft; infection; dislocation of the plates and screws and finally a occurrence of the dreaded sarcoma.  The news was good, the X-ray showed all items intact and right where they should be!  The reason for the pain is still unknown but I think it is related to nerves still coming to life after the surgery.  The X-ray did show that there is still no "boning over" of the allograft and this is expected due to the chemo which is keeping his marrow to a minimum.

The posts are becoming less frequent and that should be a comfort to you all in that there is little to report.  Things are status quo and the chemo will go on until the Doctor determines he is comfortable with ceasing the drugs.  We are not lulled into a sense of relaxation but will remain vigilant for signs of something going wrong.  Please check back often and hope you see nothing and when you do see a new post wish that it is just an update on great progress.  Evan will start the next full round of chemo on Thursday 05/15/2014 and should be done with that round by 06/16/2014 as long as his counts are good and he does not develop an infection.  

04/30/2014

Well it has been a quiet few weeks for Evan.  He did well with this first leg of the full round of Chemo and blood work that was done on 04/22/2014 showed that the Chemo did an excellent job of killing off his white cells and hopefully any derelict sarcoma cells.  His ANC level was 0 (yes zero); he did have some mature white count but the emerging "baby" white cells were the 0 part so anything times 0 is 0.  He has been receiving Neupogen shots daily to try to stimulate white cell production but it had not happened as of Monday 04/22/2014.  He was schedule to return to clinic on Thursday 04/24/2014 to recheck white cell levels again and for the next round of Chemo if the ANC was in the range appropriate to do so.

I picked up Meghan, Evan, Matthew and belongings on Thursday 04/22/2014 and dropped them off at the clinic and came to work.  I figured his ANC would still be in the dumper and I would be leaving work early to take them back home.  Well I was correct about taking them back home but not for the reason I thought.  It seems there was a miscommunication on Monday about the next scheduled round of Chemo which was actually scheduled for 05/01/2014, he wasn't due to have the treatment just blood work.  The really good news was the Neupogen was working nicely as his ANC was 5252 and he could discontinue the shots.  This discontinuation of the shots makes Evan very happy as the shots do hurt.

Meghan also received a phone call from the surgeon that performed the resection of his tumor to find out how Evan was doing with the arm and how it was functioning.  Meghan let him know that he was doing fine and was treating his arm as if nothing happened being in pain only if he moved it a little too much.  He advised her that Evan could discontinue use of the sling and use it only if she thought it was warranted.  This made for another happy milestone for Evan as he could finally put on his shirt the "regular" way.  He was also elated that he could finally take NONO the giraffe by his right arm and put his tail to his nose like he could prior to him breaking his arm.  Life is good for him and the small things make all the difference in the world.

Eli's birthday could now be celebrated without the necessity for Meghan and Evan to be in the hospital.  The original plan was to have Frank take Evan and Eli to Legoland on Saturday to celebrate Eli's birthday and we would watch Lanie.  On Tuesday 04/29/2014 we would go to the Hampel house to open presents, have dinner and cake.  It would not be the best way to celebrate but given the circumstances it would have to suffice.  Without the hospitalization, the chance to celebrate Eli's birthday in a much better way was now a possibility and the parents decided on a surprise.  Meghan and Frank took the all the boys to Medevil Times jousting theater on Saturday night in Orlando, spent the night and then spent the next day at SeaWorld on Sunday.  We watched Lanie as she was a little too young to enjoy this type of entertainment.  I am sure Meghan decided on Medevil Times because when she was quite a bit younger Sherie and I took the family there when we were visiting Disney.  It was a night of ribald entertainment the kids remember vividly because Sherie (mom) came of of her quiet reserved self to cheer on our knight.  I wish that cell phones were as advanced as they are now as I would have great footage.  If you have never been there, this is a dinner theater with live jousting.  The patrons are divided into groups that are associated with a knight and you must cheer for you knight to win.  Suffice to say that the Hampel boys were totally impressed and most of the night were open mouthed in wonder.  Seaworld was also a great adventure.  We had everyone over to our house on Tuesday night to have dinner, presents and cake.  For the Hampel's it was two days of really normal family life in the midst of all the craziness and we are very happy they had the opportunity to seize the moment.

Tuesday was also the breaking ground ceremony for the new Golisano Children's Hospital wing at Health Park hospital.  Evan was one of the dignitary's participating in the ceremony.  At the end of the ceremony he went up on a backhoe with the backhoe operator and Evan was able to take the first "scoop" of dirt to commemorate the beginning of construction.  He was once again a television celebrity for another 15 minutes of fame.

Evan will return on Thursday 05/01/2014 to begin the next leg of this round of Chemo and I am told it is actually scheduled!  I will report any significant happenings.

04/18/2014

Evan returned to Health Park Clinic yesterday afternoon for blood work and a general check up.  His white counts and ANC levels are good enough for him to continue Chemo next Thursday.  This round of Chemo will be Methotrexate.

Meghan received a copy of the surgical pathology report on Evan and I had a chance to review it.  There are positives in the report as well as challenges.  The positive is that there were clear margins at each end of the bone removal.  The bone marrow was sampled below the point of resection and there were no tumor cells noted in the sample.  The surrounding skin and soft tissue of the resection area (including the original biopsy site) were sampled and tested negative for any tumor cells.  The actual tumor that was removed was microscopically analyzed for necrosis and tumor type.  The tumor is a high grade Osetosarcoma involving the metaphysis and diaphysis of the the humerus.  The metaphysis is the area of bone that is next to the growth plate and the diaphysis is the actual shaft of the bone.  High grade means that the tumor has a high probability of metastasis to other parts of the body particularly the lungs.  Pre-surgery  Chemo did not have the desired results for necrosis of the removed tumor.  The goal of pre-surgery Chemo is to target 90% necrosis of the tumor and Evan's tumor was 60% necrotic.  This is considered a Huvos Grade II result and is considered fair to poor in long term prognosis.  Huvos Grades are I-IV with I having the poorest prognosis and IV having the best prognosis.

Evan will have several complete rounds of Chemo to attempt to rid his body of any left over chemo cells that the tumor was sending out into his blood stream.  We will have to be very vigilant to constantly check his lungs for metastasis as his Huvos Grade tells us that there is a greater propensity for this to happen.  We are extremely fortunate that Evan did not have any metastasis prior to tumor discovery as this would have been cause for great concern post surgery procedure and would have subjected him to more potent Chemo drugs.  Superman always had to avoid Kryptonite or lose his super powers; with Evan the Superman his Kryptonite is metastasis and we must do everything to prevent the two ever meeting!

I will update when there is something to tell. 

04/14/2014

Evan returned home from the hospital last night around 10:00 PM.  He had just finished up his latest round of Chemo and it was the first since his surgery.  He was admitted to Health Park Hospital on Thursday morning 04/10/2014 for hydration therapy and blood work prior to beginning Chemo.  Since it had been about a month since his last Chemo, his ANC levels were way up at 3658; White cells5.9 (low); Neutrophils 62 (normal) and Basophils 0.  This round is the worst for nausea as he receives the "red devil" and white lightning" this round.  He did well until Saturday near the end of the 48 hour drip and that is when upchuck city attacked him.

On Thursday he was really doing well and he was allowed a rare trip off the "ward" to the second floor (from the fourth) to take part in the Fur Circus.  He had to have a nurse escort in order to have this happen and the staff were very accommodating.  The circus is a traveling group with a ring master and several "animal" mascots to play with the children.  The event was featured in the local news paper on Friday and Evan was on one of the pictures published.

The Oncologist was going to add a third drug (Ifosfamide) to this weeks featured event as it is standard operating procedure since the necrosis of the tumor was less than 90%.  I belong to the acor.org listserv which is a email service that allows people who have the same type of cancer to express their feelings and to add insight to this process.  I have found the listserv invaluable for the information presented both from a scientific and human standpoint.  People on the serv will publish scientific documents for information and they will publish their stories so others can gain an better understanding of what may happen to them in the future.  I find reading about what has happened to someone that Evan has yet to experience gives me an idea of what to expect for him. There is an amazing variety of stories and outcomes that it is clear to me that there is no one path to cancer free and the journey for each and everyone has similarities and divergent paths.  There is also the stories of tragic outcomes and it is difficult to read those, but those stories have a message all their own about courage resolution and family strength.

On Sunday one of the serv members published a study done by one of the cancer organizations that stated there were no benefit to adding Ifosfamide to the standard MAP therapy in patients who had tumor removal and no metastasis.  The study further stated that Ifosfamide added to MAP therapy was beneficial when there were still active tumor inside the body in combination with metastasis or no metastasis.  I had Meghan bring this to the attention of the Oncologist when he called her on Monday to discuss the pathology report and schedule Evan's next round of Chemo.  He told her he would not add Ifosfamide unless consultation with his peers across the Country could prove something that would be compelling to add the drug.

Evan did not receive the drug and in researching its effects, this is a potent and nasty Chemo drug that leaves the patient in a very immune compromised situation that usually results in lengthy hospital stays and even isolation.  It also has some nasty side effects to the kidneys and liver.  I believe this is the best course for Evan and should he develop any metastasis I will be the first to say bring on the drug.

Evan has an appointment to see the Oncologist at the clinic on Thursday.  They will check blood levels and his general health.  We expect to see that his ANC levels have plummeted and his white counts to be almost non-existent.  I will post if there is something unusual.  The next part of this round is due to begin on 05/01/2014 if all goes according to plan.