Wednesday, March 26, 2014

3/25/2014

Evan came home last night (Monday) after a tumultuous battle with the insurance over oral antibiotic medication.  It seems that his insurance is increasingly denying requests for payment on medications to be used while at home and requiring prior authorization.  This is unsettling and if anything the insurance company should know that the request for medications is for a real and potentially dangerous situation and the need for prior authorization is a ridiculous and unnecessary action.  The need for Evan to be on prophylactic medication to prevent infection is critical so he will not develop an infection as his immune system is compromised due to the Chemo therapy.

Evan continues to progress after surgery and is responding well.  It is amazing how children bounce back after major surgery.  He is eating well and is taking walks around the facility prior to us bringing him home.  His pain level is on an up and down scale; as the oral medications begin to wear off the pain level increases.  It is painful when he needs to move around or get out of bed at the very begin of the process but once the movement is initiated he seems to tolerate any discomfort well.  We are going have Evan custom fit for a sling that immobilizes the arm until the surgeon feels that his allograft is healing and adhering well to his natural bone structure.

The antibiotic medications in question which were ordered here at Health Park on Monday at the direction of All Children's arrived and Mom picked the medications up so Evan can continue his prophylactic dosing.  They stopped by the clinic to say hello to the staff and Evan was warmly greeted.  Meghan was able to show the Oncologist the picture of the removed bone which was cut in half lengthwise.  He was very pleased on what appeared to be significant destruction of the tumor. 

Evan is due at the clinic on Thursday for routine blood work to check for cell counts and levels so I will post about that after Thursday.





   

Friday, March 21, 2014

03/21/2014

This will be a day I never forget!  It started with a wake up buzzer at 2:00 AM and the start of the trip to All Children's at 3:00 AM.  We arrived safely in the dark at 5:15 AM.  We decided to do this as opposed to staying the night in St. Petersburg as all we do is fret and stare at the motel walls.  It turned out to be the best idea as Evan slept all the way to the hospital and was never once bothered or worried like he was last night.

The staff at the hospital were absolutely amazing and completely geared to kids and family.  From check in, admit, preop, operation waiting room, postop and finally the room everyone was caring and concerned not only for Evan but for the family.

One of the nurses that was assigned to the case and was in the operating room with Evan made us a promise that she would come out and give us a brief summary of how the case was proceeding and she did that for 8.5 hours without fail.  She wouldn't tell us much but she did let us know how he was doing under sedation and how the procedure was progressing.  I believe it was the 2:00 PM hour when she came out to tell us the tumor and surrounding bone had been removed.  That was an amazing announcement and quite a relief even though we don't know how much of the tumor was destroyed.

Around 4:00 we met with the surgeon and he let us know what had happened and what the future holds but the future doesn't have a time frame as it depends on how well Evan heals and how well the top portion of the graft holds up.  Here is a synopsis of what occurred:

  • The lower portion of bone was removed about 2.5 CM from the elbow joint as planned.
  • The upper portion of bone was removed to just above the growth plate leaving a partial ball in place.
  • The bone that was removed which included the tumor was cut in half lengthwise to reveal what the tumors appearance was.  There is a picture below.
  • The surgeon stated that upon visual inspection by the pathologist it appeared that a great portion of the tumor had been destroyed.  His analysis will determine the percentage.
  • There were definite clear margins when the bone was removed.  No muscle tissue needed to be removed as the tumor was contained in the bone.
  • Instead of simple screws at either end, two plates were placed along the graft and across the natural bone and secured with three screws.
  • There is some concern about the ball end as there is no growth plate and the ball is mostly cartilage.  Time will tell how long this will last.  The hope is to have Evan grow enough to place an expandable prosthetic device in place of the allograft.
  • The nerves that needed to be moved in order to facilitate the removal and allograft implanted.  The nerves weren't damaged and time will tell if they will be problematic.
  •  The muscles that attach to the ball are intact on the ball and therefore will give him greater range of motion.
  • We opted for a shoulder nerve block to give Evan 8-16 hours of pain free time.  This should get him over the initial healing and regular pain meds should do the job.  he is receiving IV Tylenol as well.
Evan is resting comfortably in his room right now and his mom just told me that he is active enough to request dinner and he is actually eating it.

I will report tomorrow on his recovery process!  Thank you all for your prayers, thoughts and concern.


 This is the allograft in a sterile sealed pouch.  a portion of this bone was used.
 This is the piece of bone that was removed from Evan and cut in Half.  The left side is the ball end and the right is the elbow end.  you can see clearly that the tumor is basically blown up from the chemo.  We are hoping that this means a 90% or better destruction of the tumor.

Thursday, March 20, 2014

03/20/2014

We are ready to beat this monster of a cancer and the next step is happening tomorrow.  We are finally going to get the tumor out and gone from his system; hopefully for good.  Evan is in great spirits and he is aware of what is going to happen to him (as aware as a 4 year old can be).  We are all nervous and tense as we approach this next event but we know this is a must do event and the outcome is going to be what it is going to be.  We all just need to be there to move him forward regardless of the result of the surgery.

We will begin the journey tomorrow at 3:00 AM and will arrive at All Children's by 5:30 AM, the time they need us to be there.  Evan's admit time is 7:15 and I believe the surgery should start around 9:00 or a little sooner.  I will be posting to facebook events as I know them and will start the blog after he is out of surgery and in recovery.

Keep the thoughts and prayers coming, and thanks in advance.

Tuesday, March 18, 2014

March 18, 2014

Evan went to Moffit Cancer Center yesterday to finalize plans for his upcoming limb salvaging surgery.  Evan had at CT and MRI scan last week here in Fort Myers at the Health Park Hospital and we took those results to the Surgeon in Moffitt.  The ride up and back was not a pleasant one as it was raining (quite hard in some places) and I-75 is a difficult drive in dry weather; in bad its a white knuckle nightmare.

The CT scan of his lungs were clear with no evidence of disease process; a HUGE milestone!  The MRI results of his arm showed there was an encapsulation of the tumor by the growth plate repairing the fracture in his upper arm.  This means there is no soft tissue involvement of the tumor and it is completely contained within the bone.  The surgeon explained that when necrosis (death) of the tumor is occurring, it will sometimes shrink or possibly expand a bit.  Evan's showed expansion so the surgeon is confident that the tumor is being destroyed; to what extent is up to pathology once the tumor is removed.  Evan will have approximately 9.5 CM of bone material removed.

I was able to read the results of the MRI prior to going to Moffitt and it was apparent from the results that the upper growth plate is not affected by the tumor.  The surgeon's plan last time we were in Tampa was to remove the entire head of the humerus and take the bone to about 2.5 CM above the elbow joint.  I had intended to ask the surgeon about the recent MRI findings but he beat me to the question.  He told us that since the growth plate is not involved there is a chance that he will be able to preserve: some of the growth plate; none of the growth plate; some of the ball or none of the ball.  He will not know until he is in surgery and is able to visualize and make a determination with pathology.

When I posted last night on facebook about hope this is what I was referring to.  If the surgeon is able to preserve any portion/combination of the ball/growth plate it means that Evan should have more functionality of his shoulder and arm in both movement and use.  He explained that the more muscle tissue he can leave intact on the ball/cuff assembly, Evan will have more motility.

Evan is scheduled to have surgery on Friday 03/21/2014 at approximately 7:15 AM and should last 3.5 to 6 hours.  The surgery will take place at All Childrens Hospital in St. Petersburg and he will recover on the Oncology/Hematology floor there.  Meghan and Frank will stay with him during this recovery and Sherie will take care of the rest of the Hampels through Monday.  He is scheduled to be in hospital for approximately 5 days, however if the recovery is speedy he could be released as early as Monday. Evan will be outfitted with a sling that will immobilize his arm by way of a chest strap.  I think of it as a one arm straight jacket; as the arm must not be moved much during the healing process.  Evan will have at least 1 screw at the lower site to attached the allograft to the natural bone and if the surgeon is able to salvage some of the ball, he will have another screw there as well to attach the allograft to the ball.

The removed tumor will be analyzed by the pathology team at Moffitt to determine percentage of necrosis and the hope is that more than 90% of the tumor has been destroyed.  The original slides that were taken during the biopsy of the tumor in December were sent from Health Park to Moffitt to assist the pathology team in making that determination.  It should be about two weeks from surgery before we know the results.  If  the tumor is 90% or better the current Chemo treatment will be restarted with, I believe, 3 more rounds.  If it is less then there will be more drugs added to the stew.

I am asking that the prayer teams; positive thinkers, white light believers and anyone else that are out there be informed of what is about to happen to Evan and to collectively send the power of that to Evan and the surgeon for the following reasons:
  1. The surgeon has the strength and knowledge to perform the surgery to the best of  his ability.
  2. The surgeon is able to preserve some of the growth plate/ball
  3. The tumor has been destroyed by at least 90% (hopefully completely)
  4. Evan has a quick and as much as possible pain free surgery
  5. Recovery is swift.
I will be writing after the surgery to let everyone know about the outcome.

I thank everyone for their support and thoughts/prayers during this stressful time.

Wednesday, March 12, 2014

March 12, 2014

Update on Evan.  He is doing great after his last round of Chemo and is being the typical 4 year old little boy.

Meghan just booked an appointment for him at the Health Park Oncology Clinic for Friday 03/14, 2014.  He will have a sedated MRI/CT scan of his upper right arm and have blood work drawn to test his ANC/White cell counts.  The MRI/CT results will be taken with us to Tampa so the Orthopedic Surgeon can get a final look before surgery.

Meghan has also booked an appointment for Monday 03/17/2014 in Tampa to review the scans and to book his orthopedic surgery.  If his cell counts are good we will probably schedule the surgery on Friday 03/21/2014.  I will do another update late Monday or Early on Tuesday to let everyone know when the surgery will be and what was discussed during the appointment.  I will not make another update until then unless something unusual happens.


Now for something a little humorous not humerus:




Saturday, March 8, 2014

March 8 ,2014

Evan had a great night and is resting well from having this round of Chemo.  He participated in painting ceiling tiles yesterday with a group of other volunteers and had his picture in the paper as well as a video featuring the painting and who organizes the painting at Health Park.  A link to the video is below.

His blood work came back this morning and his white cell count is rebounding.  His ANC level on Thursday was 550 and this morning it is 1650.  A high ANC will be necessary to have the surgery performed to remove the tumor and surrounding bone.

His blood is due to be taken again at 2:00 and I should have Methotrexate levels to post.




http://www.news-press.com/videonetwork/3309688426001/Patients-paint-ceiling-tile-art-at-HealthPark-Medical-Center


Here are some recent photos.



This is the finished painting Evan did and it is in his room ceiling for him to enjoy when he is resting in his bed!

Thursday, March 6, 2014

March 06, 2014

 I picked up Evan today along with his mom and transported them to Health Park Hospital for the last round of Methotrexate Chemo therapy prior to Orthopedic limb salvage surgery.  He is currently receiving IV fluid therapy prior to administration of the Chemo.

He is in very good spirits and we had a relaxing trip with Matthew the giraffe in the front seat.

I will update this page as more information becomes available to me.

Evan had a restful night and took on the Chemo well.  This was a 4 hour drip followed by a 24 hr rest period before beginning the rescue drug.  It appears all is going well and we will be on to the next step of the journey at the end of March.  

The below link is for anyone interested in donating to Evan for future expenses.  I am not used to doing something like this and do not want to make a big deal of it.  It is more important for us to have friends, family and people we do not know read the blog and keep him in their hearts and prayers.  I thank anyone in advance for any donation of any size.



http://www.gofundme.com/7c9v3s


Here are some clips from the Superheros visit from a few weeks ago:
http://youtu.be/IiDGAosdNvY
http://youtu.be/7ZcBiwH_2zc

Monday, March 3, 2014

March 03, 2014

Picked up Evan yesterday morning at the hospital.  He is doing fine and Methotrexate levels are low.  His kidney function is good, creatin levels are in the normal range.  He will be back at the hospital on Thursday for another round of Methotrexate and this will be his last Chemo treatment until after his Orthopedic limb salvaging surgery.  We expect his liver enzymes to be high by Thursday and decreasing by the weekend.  The surgery is still tentatively scheduled for 03/21 or 03/28 and is dependent on his White cell count.  I found out he will probably need to have blood transfused during or after the surgery and I am making inquires as to how we can direct donate blood for him to be used at All Children's hospital in Saint Petersburg.

The staff at the hospital is really enamored by Evan and treat him very special.  They love his huge giraffe Matthew and try to get Evan to leave him there so the giraffe can keep them company.  Of course he won't have any of that whatsoever.  He is now making beaded necklaces for the nurses to hang their name tags on and they are paying him to do it!  We have an entrepreneur in the making.

It also seems his celebrity status, because of the super window washers and his interview on TV, has put him further in the spotlight.  The hospital is building a new wing dedicated solely to the Children called Golliasano Children's and the ground breaking will be in April.  The Doctors involved with the hematology/oncology wing want Evan to be one of the "ground breakers" by helping one of the construction workers use a bulldozer to move some earth. I will let you know if it materializes!