Thursday, February 27, 2014

February 27, 2014

Dropped off Evan and Meghan this morning at the hospital for his latest round of Chemo.  He is in great spirits and was ready to go the minute I got to his house.  It is amazing to me how he is able to go to a place that is going to make him sick and not feel well and I am greeted with a hug, smile and lets go attitude.  We of course had to take Matthew the giraffe along and I had to stuff him in the front seat and mom and son in the back.  The trunk was full of suit cases and totes full of clothes, food and giraffes.

He is currently hydrating and as soon as that is complete he will start the Methotrexate drip.  His white counts are good: WBC 3.8; HGB 10.5; PLT 430 and ANC 1520.

Evan ended Chemo treatment at about 7:00 PM on 2/27/2014.  The Chemo will be allowed to stay in him until about 3:00 PM today when the Vitamin regimen will begin to assist him in flushing the drug out.  He is resting and tolerating the procedure well so far and has only one bout of nausea this morning. 

I will keep you posted as I receive updates.

Tuesday, February 25, 2014

February 25, 2014

We went to Moffitt Cancer Center yesterday to see the Doctor and plot a course of action for Evan.  The plan  is outlined below with a few pictures to assist.

The center is huge and treats all forms of cancer and is located on the campus of USF.  We were instructed to have the valet service park our car and to enter the lobby.  There Meghan needed to call the secretary on the unit we were to visit and we would be escorted to the clinic.  The escort was necessary as we would have been lost.

We discovered that  most of the humerus will need to be removed due to the large size of the tumor.  The entire head (ball) of the bone will need to be taken which will remove the growth plate at the top end of the bone.  The socket (glenoid) will be left intact and the bone will be removed to just above the elbow.  In X-rays of the arm comparing December and February, there is a marked difference in the tumor signature but only pathology will be able to tell how much of the tumor is necrotic (destroyed).  There has been no soft (muscle) tissue involvement as the tumor has not advanced outside of the bone and in fact the fracture caused the growth plate to lay new bone over the tumor site.  The picture below illustrates this.

Here are the options and how they were accepted or rejected:

Option 1 was to have Stanmore Implants create a titanium humerus with ball to be implanted in Evan.  A photo of the device is below.  This was rejected by the Doctor and eventually by us due to the fact that there is a significant weak point near the elbow.  The diameter and depth of the bone after removal of the tumor is small and the worry was that there would not be sufficient stability of the implant to bone and this could cause serious problems with additional fracture at the attachment site.  If you look at the bottom of the implant you will see an area that looks like an acorn seed.  The nub area is what would be implanted into the center of good bone above the elbow and the two wings would be wrapped around the bone and screws placed though the holes into the bone structure.  This is an excellent design for a bigger bone but not for a small one as the nub area is not very long.  The Doctors like to have a longer nub area for good adherence.  There is significant stress on this area and the potential for fracture, separation or the device to not heal properly  was a real concern.

Option 2 and the one we are going to go with is to have an allograft (cadaver bone) implanted after bone removal.  The university of Miami is providing an adult fibula to use on Evan.  The bone closely resembles a humerus and its length and diameter are close to the size needed.  It would be almost impossible to find a child humerus to use in this situation and we cannot wait for one to materialize as the tumor must be taken out.  The bone will be shaped to be like the titanium nub and will be placed in the center of the good bone just as above and they will use plates and screws to secure the implant.  The chance that Evan will begin to lay new bone over the allograft and cement a strong graft site is excellent due to his age and the growth plate working well.  The upper part of the graft will fit into the glenoid and be covered in gortex followed by the muscle layer.  This will in time give him the ability to move his arm freely but not completely overhead.

Evan is due to have to more rounds of Methotrexate starting this Thursday with the second round the following Thursday.  That will take us to March 10th with surgery scheduled later.  He will have a CT scan of his arm and lung for review before surgery.  The lung CT is especially important as they wish to make sure that the lungs are still clear of any signs of sarcoma.

As with all surgeries the risk for infection is present and is probably elevated due to his compromised immune system.  All the different scenarios to deal with infection were discussed and understood.  I will explain those later if he should develop one.  There is a good chance that there will be numbness in the arm because they must move nerves out of the way in order to remove and replace the bone but the Doctors feel this will be transient in nature; however the possibility of permanent numbness and damage exists.  The movement of the radial nerve is especially tricky as this nerve actually wraps around the humerus and needs to be gently coaxed away from the the bone.  His ability to flex his wrist will be compromised at first but the Doctor feels this too will go away after the radial nerve "settles" down from being moved.

The surgery will take place at All Childrens' in Saint Petersburg Florida which is adjacent to Tampa.  We have been there before with Ethan for outpatient surgery and know and like the place very much.  His surgery will be about 6 hours long and is to take place either 03/21 or 03/28 dependent on his white cell count.  He will be in hospital for about 6 days and then be released to go home.  Follow up appointment in Tampa will be scheduled for 2 weeks later.  His arm will be immobilized for quite some time to allow for the graft to adhere and new bone to be laid down.  After that he will need physical therapy to teach him to use his new arm.

The removed tumor will be analyzed by the pathology team for necrosis and the goal is to have at least 90% of the tumor to be destroyed.  If that is the case Evan will undergo another series of Chemo therapy with the same assortment of drugs he is currently taking.  If it is less then they will add a few more potent drugs to the mix to make sure that any cancer cells still in his body will be eradicated.

In time the allograft may need to be lengthened and that can be accomplished by adding a piece of new allograft.  The allograft may not take on new bone as expected and in time may become brittle and unstable.  If that happens then we would use the titanium rod as a replacement for the allograft.  The thought process on this is that the allograft will probably stay in place for at least 4 to 6 years which would place Evan at 8 to 10.  His natural arm just above the elbow would have grown significantly in length and girth during those years allowing for a stronger implantation of the rod that was not previously a reality. 

So this journey will be a long and steady one with the hope of increasing health and decreasing surgery and disease freedom.  I will be writing this blog until the day we are free of the cancer and the implant is a complete success.



Sunday, February 23, 2014

February 23, 2014

Evan finally came home yesterday!  His family is rally happy to see their brother even if it only for a few days.  Tomorrow is the trip to Moffitt Cancer center in Tampa Florida to speak to the Ortho team on what their plans are for removal of the tumor and what will take the place of the bone that is removed.  The appointment is not until mid-afternoon so i will be reporting on their findings on Tuesday.  I hope to report great news and a timeline for surgery.









Wednesday, February 19, 2014

February 19, 2014


Well this was a great day for Evan!  At 9:00 AM he was surprised by a trio of Super Hero's rappelling down the outside of his window to greet him and cheer up his stay in the hospital.  Justin was able to secure the services of this Naples Florida group to come to the hospital here in Fort Myers to surprise him.  The hospital staff including the Media relations persons were really impressed that Justin had pulled this off as they have been attempting to secure the same trio for quite some time without success. Evan who is normally very talkative and assertive at the hospital was speechless!

To add to the positive atmosphere of the morning, both NBC-2 a local television station as well as the News Press a local news paper were on hand to record the event and to interview Evan and Meghan.  That interview was aired at 11:00 AM, Noon and 5:00 PM today.  NBC-2 also did a live feed from the hospital during the 11:00 AM broadcast.  I was very impressed on how Evan and Meghan handled the attention and how well they presented themselves on television.  It was a little overwhelming for me but I was also very proud of the moment.  A co-worker here, Loetta Morales (my administrative assistant) knows Nick Ciletti from NBC-2 and I asked her to contact him on Monday when I learned of the scheduled visit.  I did not know that NBC-2 was going to cover the event until 5 minutes before it happened.  Nick is a dedicated professional and handled the entire visit with diplomacy and the utmost care for Evan.  I have always liked this channel for news coverage and now I am even more dedicated to the station.

If the News press runs a story on Evan I will be sure to include a copy here.  I do believe they will as the reporter asked numerous questions and who doesn't love the face of an innocent child?

Update:  Just wanted to add a video or two of the ones I have been posting on Face Book.  I want to add here (and that is why you need to read the blog as well as Face Book is that I will write more deeply here), that nothing makes a Dad's heart melt faster when he realizes that his child has grown up and become a responsible adult. This clip of Meghan talking to a news reporter demonstrates this succinctly; she is direct; poised and never misses a beat.

http://www.nbc-2.com/story/24769330/cancer-stricken-boy-gets-a-super-surprise?autoStart=true&topVideoCatNo=default&clipId=9859789
















Sunday, February 16, 2014

February 16, 2014

Evan continues to be hospitalized for the port infection and will be in at least until 2/23/2014.  He is in great spirits and is doing really well.  He is crafting and has an appetite and tons of energy.  Another round of Chemo is scheduled for Thursday and as long as his port does not have to come out that will begin on schedule.  His testing titers for infection have been negative so that is a sign that the Vancomyacin is working and the port is being cleared of infection

Meghan was in contact with the Ortho team in Tampa Moffitt since we were unable to travel there due to Evan's infection.  The news from the team is not as favorable as it could be.  I haven't talked to them as of yet but from what I could tell from Meghan the following is what is available to us:

  • The prosthetic device is available to us but due to the fact there will be little natural bone left over to attach the device to, the team is afraid that there will be many complications to this avenue including detachment and breakage.  This was truly disappointing news.  The team will perform this procedure under protest.
  • The Fibula approach is also problematic in that there would be a large portion of the bone removed and this would cause serious problems with leg development over time.  I believe from all of the list servers I have been reading up on, this is problematic for other people as well regardless of age.  Issues include: nerve pain; loss of sensation; brittle bone area; loss of balance; infection of both surgery sites and the list goes on and on.  The team has elected not to perform this procedure.
  •  The team is recommending that a cadaver bone be placed in the area of tumor removal.  A bone suitable for Evan and his age is difficult to come by due to the low morbidity of children his age along with low organ donation.  I believe, and this is where it gets a little foggy for me and I will have to question the surgical team,  this is to buy Evan years of time so that his joint areas grow sufficiently to allow the prosthetic device.  I believe also that it is entirely possible that the cadaver bone would grow and future replacement may be unnecessary.  A request for a cadaver bone has been forwarded to University of Miami and we are currently on a wait list.  This is being done regardless of what final decision we make.
 Our course of action as of now is to get Evan healthy and the infection in his cured.  We will have the next two rounds of Chemo to finish out the second full round of Chemo and then we will travel to Tampa to have a conference.  It is possible that we will travel to CHOP in Philadelphia for a second opinion.  Anything is possible so stay tuned for updates.

The family is aware that nothing is going to be easy along the road to "No Evidence of Disease" (NED) and that there will be bumps or pot holes along the way.  I will say that the road is made easier by all the support from relatives and close friends as well as people we barely know so keep the prayers and positive thoughts coming his way!

Thursday, February 13, 2014

February 13, 2014

Evan is an amazing little man.  He has been hospitalized since Monday with an infection in the port used to draw blood and introduce Chemo drugs.  His spirits are high and he is feeling well.  His temp is normal and he is receiving the two different antibiotics to attempt to clean out the port.  If the port cannot be cleaned, then they will have to go back in and remove the port and place another one in.  The bacterial invaders are gram positive and If I can remember my biology days, that means that antibiotics are more able to penetrate the cells and kill off the bacteria better than gram negative ones.

He will be in hospital until at least 2/23 as his next round of Chemo is scheduled to commence on Thursday, one week from today.  I want to thank everyone who has been assisting the family during this long incarceration.  Everyone is pitching in and making sure other family members are in school and in safe places.  Without this assistance we would be way behind the eight ball.


Wednesday, February 12, 2014

February 12, 2014

Well we knew there would eventually be a bump in the road of this journey and we have finally hit a pretty big one.

Evan's cultures have returned positive for a common staph bacteria that lives on the skin.  It was introduced into his port during normal access.  No matter how clean and disinfected the skin is prior to access there will always be a few that pass through.  Normally this is of no concern as the immune system (white cells) take care of the invaders except when there is no immune system which is the case with Evan.  He will be closely monitored as this type of infection if not kept in check will be a disaster for him.  He will be receiving IV antibiotics for the next 7 days every 6 hours and his temp will be monitored as well as cultures taken to make sure that the bacteria do not take a strong hold.

Evan is receiving two different antibiotics to combat the infection.  Drug one is Cefepime given one gram IV every 8 hours and the other is Vancomyacin given 355 MG every 6 hours.  I believe it is akin to using a grenade on an ant hill but whatever works I am all for it.

CDC visited Evan and Meg in the late afternoon to check on him and to check on the policy and procedures used for port access.  The person explained it is a simple as Evan breathing out while the port is accessed for this to happen.  The bacteria are in the port and the antibiotics are used to flush and clean the port of the bacteria.  If they cannot get rid of them then the port must come out and a new one put in.  I really hope the course of antibiotics works!

I will post progress notes as I get them from Meghan.

Monday, February 10, 2014

February 10, 2014

9:28 AM: Evan went to clinic today for his usual follow up to check blood levels.  He has a fever of 101 and is being admitted to hospital for IV antibiotics until the fever subsides.  I will post updates as I have them.

He is receiving IV Cefepime for the infection and will be receiving doses until the fever subsides.  He will also be receiving blood and platelets today.  My directed donation expired last week but there is another unit that was donated by a coworker last week and this unit is on its way to him.  I will be able to donate on the 26th and we have another 2 trusted friends of the family donating this week.  His counts: white cells .9; hemoglobin 7.3; platelets 11.0 and ANC 45.  The Doctor order a chest CT to make sure lungs are clear and the result is they are.

First blood culture has come back and it is negative for bacteria!  There are a few more still to come back but this is a positive first step.  Temperature is still hovering around 100.8 so Evan will be in until the fever is below 100.4 and the other cultures are back as negative.  

Evan will be spending the night in the hospital monitoring his temp and receiving fluids.  His blood has been cultured for all the possible suspects and slowly we are getting the results.  So far he does not have strep or the flu.  He is resting comfortably and is eating, a very good thing.

Saturday, February 8, 2014

February 8, 2014

Evan is having a bad night tonight.  He may have to go to hospital for IV antibiotics because his temp is up a bit.  He may have to have blood as well.  It is expected and we are all alert to the probability but it is still very stressful. I will update this post as I know what is happening and hopefully with prayers and thoughts we will be able to report that he is fine and did not need intervention.  The blanket he has on in the picture is from a very special person I went to school with and it was a great comfort to him tonight!  Thank you Sharon Davis and the prayer warriors for the blanket and the prayers!

Update 02/09/2014: Meghan just reported that he rested well overnight and is feeling better.  His temp is down to 98.1 from 99.7.  He feels well enough that he is requesting to go to church and Meghan is preparing him to go!

 What a roller coaster!

Friday, February 7, 2014

February 07, 2014

Evan goes to clinic today to have blood drawn and tested for white and red cells.  The Doctor feels he will have to have a transfusion of blood today and I will let you know that when Meghan texts me with the results of the blood tests.  His appointment is 9:00 AM and I should know by 10:00 AM.

Evan has been great spirits and is eating rather well but with unusual combinations.  Those of you who follow on Facebook know that on Tuesday he had an ice cream smoothie with pineapple and a few other goodies tossed in, followed by a small bag of cheetos and then for the last snack of the day he had a 3-4 oz portion of salmon with honey mustard sauce.  I thought for sure that combination was going to come back up but it did not!  He went to school for an hour on Tuesday but did not go on Wednesday because he was tired and wanted to sleep.  He is pale and this the result of the latest chemo which destroys most of his marrow and subsequent red/white cells.  This is the reason that the Doctor feels there will be a need for a transfusion.  Last night he asked me fish again which I didn't have but offered him some of the grilled steak I was making for the adults for dinner which he readily agreed to.  He had enough energy to want to help me grill the steak and went out onto the lanai to assist me in doing so.  He was rambling on in his typical Alvin and chipmunks'  voice talking about the stars being bright and clouds in the sky; talking like a typical little boy that didn't have a care in the world or cancer in his body.  This is an amazing little person taking on the day with no complaints; he even is accepting the neupogen injections without complaint and they hurt!

 10:22 AM Update: blood work results are in and he does not need a transfusion. Counts are low but not enough to warrant the need to do so.  He is preparing to go home until next visit.

2:30 PM Update:  We have an appointment with the Bone Doctors on Thursday 02/13/2014 At 12:30 in Tampa.  Thoughts and prayers appreciated for this important meeting!





Sunday, February 2, 2014

February 02, 2014

Today is a down day for Evan.  We were expecting to break him out of the PONC (pediatric oncology) on the 4th floor of the hospital but it was not to be.  He began to feel unwell toward the end of the red devil and white lightning treatment and beg to have bouts of vomiting.  He was alright overnight and just as the Doctor came in to see him, Evan had another session of tossing the cookies.  The Doctor rightfully decided to keep him for observation as dehydration is a very real and serious thing for Evan.  He remains hooked up to IV hydration and in the pictures below you will see he looks ruddy and puffy because of it.  Around 4 they got him in a wheel chair to tour the hospital and I believe his Dad is with him to cheer him up.  We continue to watch the other kids until Dad comes to pick them up later tonight.  If Evan is feeling well tomorrow I will take him home from the hospital.

While I feel terrible that Evan has to stay another day in the hospital and that he isn't feeling well; I do believe this round was much better than the first.  We all are very aware that this is just the beginning and that there will be days of angst and days to celebrate.  This round of Chemo gave us both.

Keep the thoughts and prayers coming as we need all we can get to keep Evan positive and on track.  I can't say enough about the nursing staff and how well the take care of him.

I also mention Brad and Amy again for the giraffe, a gift he is cherishing as evident in the pictures.  Amy was at a meeting and ran into a vendor who had the giraffe.  She wanted to take a picture so she could give it to Evan.  When the vendor found out why she wanted to take the picture he was adamant she take the giraffe to Evan.  I hope with a little determination and research I can find out who this person is so I can personally thank him for his generosity.  The good within people never get enough press in my opinion.

I'll keep you all posted as we have events to talk about.