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.  

4/06/2014

Evan had his first Post-Op appointment with the surgeon at the Moffitt Cancer center in Tampa Florida on Thursday April 03, 2014.  We reviewed the X-rays that were taken at Health Park medical center on Tuesday.  The surgeon was very pleased with the progress that Evan has made especially the fact that he is using his fingers and wrist without any issue.  Evan can flex his elbow and the surgeon wants him to do so on a limited basis.  He does not want him to raise his arm using the shoulder as this is the most vulnerable area and will take some time to heal to the point that Evan can raise and rotate his arm.  The surgeon wants Evan to wear his sling during all waking hours to protect the arm until the lower section of allograft begins to bone over as Evan's growth plate begins that process.  Unfortunately the healing process will be impeded somewhat by the continued Chemo that must take place shortly.

The X-rays are below  and if you look closely, you can see where the allograft is seated down inside Evan's natural bone near the elbow.  There is a plate that extends upward from the elbow and is secured with a few screws.  There is also a second plate that extends downward from the ball  and is on the opposite side to give more stability to the prosthesis.  This plate is secured with some nasty looking screws and the whole assembly looks like the old erector sets I used to play with as a child.


We were expecting to have a conversation about the pathology report that was due.  This report would outline the amount of necrosis (death) of the tumor and would be a guide for the Oncologist in Fort Myers to plot out Evan's remaining Chemo.  From my posts prior the goal was to have a necrosis rate of 90% or better as this would mean less intense (same as before) Chemo.  Unfortunately the report was not ready and we had to leave Tampa not knowing the results.  The surgeon had stated that he liked to discuss the results in person and felt the report would be finalized the very next day.  He promised that he would call rather than make us complete another four hour round trip.

Meghan did receive a call on Friday afternoon and the news was disappointing.  The necrosis rate of the tumor was only 60%, not the 90% or better we had hoped for.  At first this raises your heart rate a bit and gives you concern because you realize that the probability of live tumor cells circulating through Evan's blood was a real and dangerous threat to his health.  Then you begin to settle down and retrench the thoughts and actions.  I came to the realization that even if the tumor had 100% necrosis, there would still be live cancer cells circulating through his system and that Chemo needed to be done anyway; also I realized that 60% of this tumor was destroyed and it is out of his body and can no longer send out deadly cells.  So in reality we have a positive outcome and we have agressive parents and Doctors that will do anything to cleanse his system of Cancer cells so there isn't a relapse or a metastasis of the Osteo.  We still have a very, very good fighting chance.  Meghan is going to contact the Oncologist on Monday and see if we can begin Chemo immediately; perhaps as early as Thursday.  The sooner we start the process the better and we realize that the Oncologist may want to add different and more powerful drugs to the party and that is what we will do.

I have received advice and comments from many wonderful people that have either gone through this or have a relative that has gone through the treatment necessary.  They have given me great comfort in relating that the percentage of necrosis is just that a percentage and there is no peg of glory to place that hat on.  One person told me that their relative had 100% necrosis and still had a relapse with Mets to the lungs but is now NED and has been for years.  I had another that told me their relative had a 10% necrosis and is now NED for years with no further Mets.  So the journey is never written in stone and each and everyone has a slightly different story and path to survival.  I cannot thank these people enough for opening their hearts and baring the wounds and scars so I can have comfort knowing there will be potholes in the road to NED for Evan.  That is why I am writing the blog so others can follow and if they have a journey like Evan's and they have just started they can see what has happened so far.  I do believe that a positive attitude by patient and family helps to keep the journey on the correct path and I know the resolve of this family is never wavering.

I will post again when we begin the Chemo process.