Friday, September 12, 2014

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. 





Friday, August 8, 2014

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.


Friday, June 20, 2014

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.

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Friday, May 30, 2014

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.    

Monday, May 12, 2014

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.  



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Wednesday, April 30, 2014

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.
















Friday, April 18, 2014

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.