January 31, 2014

What a difference a drug can make on this process!  It appears that Kytril is the wonder anti-nausea medication that is keep him from bouts of vomiting during the IV drip of the red devil and white lightning.  Evan had a very peaceful night and was able to sleep except for waking to pee because of all the fluids they are giving him.  I will report back later on how well his day is progressing.


Saturday 2/1/14
The good news just keeps coming in.  The Doctor visited last night and just could not believe how well Evan was doing.  He was eating (not full meals but snacking on just about anything and everything) and most importantly keeping it down because of the Kytril, he was also not experiencing any diarrhea.  His urine output was also normal.  The Doctor felt that if this continued he could go home on Sunday instead of Monday or Tuesday.

I only have good pictures to show today and that is really not a bad thing!


Amy and Brad are special people!  Thank you both so much for the giraffe!  Evan will Cherish him for a long time to come!!

Update: Saturday 2/1/14; Whats Chemo with out a little vomiting? It would have been silly of us to think that this session would be puke free and we are correct.  He is having a few bouts right now but the way I look at it is he made it 42 hours before it happened.  Chemo is over at about 5:30 tonight.

  

January 30, 2014

Just when I though this was becoming routine, it isn't.  Went to pick up Meghan and Evan for the latest round of Chemo and as I went in the house, Evan was crying and having bouts of vomiting.  It seems his nerves had gotten the better of him and he was really scared about today.  He is very aware that he was going to receive the Red Devil and White Lightning (What I have chosen to call this treatment) and how sick it was going to make him.  Everything was hurting him and it was a struggle every step of the way.  But in the end he sucked it up and went right along to the car and hospital to begin the treatment.  I am always amazed at how well he acts when he knows there is no other alternative.  He had a bout of vomiting in the car and missed his bucket and made a mess of his sweats and car seat.  He was worried that I would be mad about this, (imagine he is worried about the mess he made when he should be worried about more important things), and I made sure when he got out of the car the he was well aware that it didn't matter and that it would be all cleaned up and his seat washed and ready for him to come home in a few days.  I got a smile out of him which meant worry gone and he is loved!  So I watched them carry their belongings and go into the hospital soiled sweats and all to face his next leg of the journey.  I am intensely  proud of Meghan being able to handle this situation with almost grace and ease; resigned to the fact that we all will do whatever is necessary to make Evan comfortable, quiet and well cared for.

Check back during the day for updates as I receive them from clinic central.  I just received a text from Meghan that his blood has been drawn for testing and he is hooked up to IV for hydration. It is 10:00 AM.

Update: 11:15 AM Blood work is back and ANC is 2448; WBC is 4.8; Neutrophils 50.7 and Basophils 1.3.  His treatment can begin after full hydration.  His liver enzymes are AST 772 and ALT 1663.
4:30 PM: decadron has been introduced and the red devil should be next.  Evans spirits are good.

January 27,2014

Meghan sent a text this morning that his levels have gone down to 0.09 as of 11:00 PM last night.  They are waiting for the Doctor to sign discharge papers so he can go home.  I will go to the hospital to get them and drive them home.
Evan is safely home until This Thursday when he will return to the hospital for another round of Chemo.  The Doctors will probably transfuse him after this round as his red cells and hemoglobin are low. I will update everyone as I know more!

January 25, 2014

Evan started his Leucovorin rescue at 11:00 PM last night and had his blood tested.  Meghan sent a text today and his level is 3.17 which is lower than the first draw on the first treatment.  That number was 4.5 so he must be tolerating and getting rid of the Methotrexate better.
That worrisome liver level has also dropped to 500 which is lower than the last test of 700 and much lower than the first of 1100.  I suspect that a week from now the level will be very high and then taper off.
We have the rest of the family again for Saturday afternoon and part of Sunday.  I am making smoked Turkey for them and promised Evan I would save some thigh meat for him when he returns home.  If all goes according to plan that will be Monday.

This was Evan this morning after breakfast.

  
Update from Meghan:  As of 11:00 PM on 1/25 his levels have dropped to .24!  I believe they are drawing again at 11:00 AM on 1/26 and he can possibly go home if they are .10 or less.
Check back as I obtain updates I will post them here.

Update: 9:00 AM 01/26: Platelet levels are down along with CBC so he may have to have a transfusion.  I have directed donated to him and my donation is 31 days old and is good for 45.  We have another directed donor that I work with and she just donated 6 days ago so there is ample supply for him from very trusted sources!  Thanks to my co-worker!

Update 12:50 PM 01/26:  Methotrexate level is .14 so they will have to stay the night and have another draw at 11:00 PM.  They should be able to go home tomorrow morning.  The good news is his CBC is good so there will not be a need for transfusion.

January 23, 2014

I picked up Evan ad Mom at their house this morning to bring them to Health Park for his next round of Chemo.  Evan has come to accept that he must have more Chemo and now knows the difference between the drugs used.  He knows them by color and is aware that he will have to have another round of the really bad red stuff next week.  Today is the yellow one and it is not too bad (his words).  I am amazed at how he has taken this in stride.  Meghan and I discussed about how we were worried a year ago when he wouldn't talk much and even had him at a speech therapist.  Fast forward to this past month and we realize he didn't need the therapy at all because he has become a witty chatty Cathy and talks a blue streak!

As I got to work today I received a text from Meghan that the Doctors from Moffitt had called and requested that Evan have an X-Ray taken of his right arm with measuring devices so those X-Rays can be sent to the UK for analysis by the team that might build his prosthetic bone.  I say might because the Doctors and the UK team have never made an expandable prosthetic device small enough for a 4 year old so this is the way to determine if it can be done.  I certainly hope that we will have good news on this next week.

Please stop back occasionally as I will be posting updates to his progress today and any extra information on the X-Ray situation.

X-rays completed and Evan is receiving fluids so Chemo should  commence late afternoon or early evening.  ANC levels came back and they are 1250 so he can receive the Chemo with no issues.

It's 5:00 PM and I'm at the hospital. The chemo has not started yet as the X-ray took a little longer. The doctors here wants the best possible pictures to send to the UK.  One small concer to watch is his liver enzymes are elevated but not so much as to prevent this treatment.

The one picture is a sign I made for Evan based on an image created by Ben a longtime friend of Meghan.  The other is a pic of all the giraffes people have been sending.  Thank you all for thoughts, prayers and gifts!

Update: Friday 01/24/2014: Chemo started late last night.  The floor had an emergency admission so it delayed Evan's treatment by a bit.  His  Chemo ended about 3 AM and he is resting well.  The new anti-nausea medication seems to be working well.

The only item that has me a little concerned is the elevated liver enzymes.  I did a little internet detective work and it seems that people undergoing IV Methotrexate therapy (even high dose oral) will have elevated enzymes as must as 20 times higher than the upper end of normal levels.  Once therapy is discontinued, levels usually drop to normal.  Since he is 7 days out from first treatment, it is fairly normal to have really high enzyme levels and Evan is in the 17 times high normal right now.  It will bear watching by the MD and Nursing staff along with as Meghan and the nurses call me "DR. Bob".

For those who are following the blog and are not on Face Book, I am including a Video tribute that a friend of Meghan's made for us. His name is Benjamin LeBaron and the video is very special to us.  Hopefully as Evan's journey continues he can make more!

1:20 on Friday and Meghan is reporting to me that Evan's liver enzymes have come down dramatically.  His AST yesterday afternoon was 1155 and today it is in the 700!  Good job Evan.

January 19, 2014

Evan is waiting until his Methotrexate levels go below 0.01 and then he can go home.  This morning it was .17 down from 2.5 the night before.  Hopefully he can go home after the 5:00 PM blood draw.  His ANC levels are great at 7,455.  We all want him to be home tonight as he has to be back on Thursday morning to repeat what has just happened.
He was given a parole from his room and the 4th floor for about 2 hours so Meghan and Evan are patrolling the floors of the hospital looking for Pelicans.  I have a pic of him on a pelican for you to see.
I will post to this blog today as I get updates.

His levels needed to be at .10 not .01 and he is at .9 so he can go home!!
Evan is resting a home with family and will return to the hospital for round #3 on Thursday.  I will probably not post until then unless something occurs. 

January 18,2014

Evan began his Leucovorin treatment last nite at about 5:30 PM.  I had reported yesterday that he should begin the treatment 12 hours after the last Methotrexate went in but I was wrong on that.  Please forgive me but there is a ton of information swirling around and I am bound to make an occasional error.
His blood was taken and analyzed for levels of Methotrexate after the Leucovorin treatment and it was 4.5 (not sure the unit of measurement) and for him to leave the hospital the level must be at .01 or less so he has a way to go.  The nursing staff will check the levels again after 5:30 PM today.  He is receiving Leucovorin at regular intervals along with fluids.  I was at the hospital this morning to deliver some pasta that he requested last night and he ate it as soon as I got there.  We made quite a bit so there is some for later if he would like some more.

I really appreciate people close by respecting Evan and Meghan's privacy and we appreciate all the gifts left for him. It will take a village to beat this and it is humbling to see just how many people want to belong to the village.

I will update later on how much his Methotrexate levels have dropped an possibly when he might be released.
It is 8:10 PM and the new numbers for Methotrexate levels are in; they are 0.27 down from 4.5 so hopefully in the next 12 hours or so the levels will  be below the .01 needed to get him out for a few days until Thursday.  Meghan just reported that they will check blood every 12 hours now and that his creatin (kidney) levels are doing just fine.  I will report in the morning as I get new information.

Just good news.  Please keep sending prayers and positive thoughts!  He is truly our Superman!!

Sunday January 19, 2014, 10:00 AM : Evan's Methotrexate level is at .17; still too high to bring him home yet.  He will have another blood draw at 5:00 PM and hopefully he can come home tonight.

January 16, 2014

I picked up Evan at home today with his Mom and dropped them off at Health Park so Evan could begin his next round of Chemo.  The Doctors and staff all say that this round of Chemo will be less nauseating than the first.  I really hope this is the case!  He will have his port accessed and blood drawn to assess his ANC values and if they are at or above thresholds, he will then have a 6 hour or so infusion of saline and dextrose to pump him up so he can accept the Chemo.  This is a 4 hour drip and the chemical will affect his liver and kidneys.  After the 4 hour drip, there is a window of a few hours and then they must begin an infusion of Folate (folic acid) in order to jump start the liver and kidneys and flush out the chemical. Evan will be hospitalized for at least 72 hours so tests can be run to make sure that his organs are responding to the Folate.  He will then be able to go home only to return to the hospital next Thursday January 23 to repeat the process I just described.  Then the following Thursday he will return again to begin a repeat of the DOX and Cisplatain.
Last night Justin, Kristin and family visited with the Hampel herd as their flight back to the frigid North is today.  Evan was convinced that cutting his hair really close would be a benefit and be much better than having his hair fall out in clumps.  When the hair falls out in clumps it just an irritant as it goes down his back and makes him itch.  I think he looks GREAT!

I will be writing to this post throughout the day so please check back to see updates.  The next post should be shortly with his ANC values. Enjoy the pictures.

It is 10:30 AM and Evan is currently having IV fluids and waiting for a room on the 4th floor.  The floor is currently full but it is expected that a discharge will happen shortly.  His ANC levels have just come in and they are 2,880 well above the threshold for having Chemo today.  His spirits are good! I will post as I know more as the day continues.

It is 4:20 PM and I have stopped by the hospital. Evan is ready for the Chemo and should be done by 7:30 tonight.  The Folate should happen before midnight. I will let all know later how he is reacting to the Chemo.

Just got home from the hospital.  Evan's Chemo started a little later than planned and should be done by 9:30 tonight.  His spirits are good and so far no real nausea from the Methotrexate. He did have a puking session from the Decadron that was given prior to the Methotrexate. Decadron is given to help kill cancer cells and enhance the Chemo given.  The nurses gave it at a rate of one dose IV over 20 minutes and they felt it was too fast for him so next time they will up the time to 30 minutes and that should keep him from tossing the old cookies.  I plan on visiting Evan tomorrow at lunch time and Sherie is going to be there after her work session on Friday; sometime after 2.  More updates to follow as I get them.

It is 9:40 PM and Evan is done with the Methotrexate drip!  He has had no nausea or vomiting from this round of Chemo; what a relief!  He is sleeping right now and is tolerating the treatment better than expected.  It is so hard to watch a little tyke heaving for no reason in his mind.  They will leave the Methotrexate flowing in his body for 12 hours and then start the Folate rescue.  Everyone have a good night and I will report tomorrow on how well he is doing with the treatment and the Folate. 

1/15/2014

Evan has had a good week so far, his uncle and aunt from New York are here to visit with their two children and it has been a nice diversion.  The noise level in the house with 6 children under the age of 9 is akin to two jet airplanes taking off at once but I have no complaints, just happy to see them all playing.

Evan went to school the past two days lasting longer on Monday than Tuesday as it is tiring for him to engage in school.  It is very nice to see that the school and the teacher are all accommodating to him and his needs.  The Oncology group has stressed to make his life as normal as possible and it is so encouraging to see everyone pitching in to make that happen.

Evan begins the next round of Chemo Thursday so expect posts starting tomorrow on events surrounding his hospital stay.  I did notice last night when Evan was watching TV that his hair is beginning to really come out in clumps so I don't expect him to have much left after this round.

January 10, 2014

We went to Tampa toady to the All Children's Clinic near Moffit research center which is within the University of Florida Tampa campus.  We met the surgical team there and had an open discussion on Evan's options for limb salvage surgery.
 While we came home with no definitive path to take we did come home with a real comfortable sense that the team of Doctors and Nurses were not only up for the challenge that Evan is presenting but were eager to assist and had every intention of treating Evan as if he were their own son.  Each team member showed compassion, concern and dedication to us at all times.  One of the Doctors actually sat on the floor and discussed mind craft with Evan as it is one of his favorite games.  This same Doctor offered his phone to Evan so he could play a similar game with him all while sitting on the floor.

The team reviewed the disc of radiology and CT scans that were done in Fort Myers; showing us where the cancer was, where the fracture was and that there was very little muscle involvement.  They then discussed the two options that are currently available to us and told us they could not recommend anything yet as there needed to be further discussions with other Doctors and members of Children's hospital before they could recommend.  They stated that this center has done many limb salvage surgeries (enough to be the leader) that included both leg and arm.  They clearly stated that they had never had a case as young a Evan so that is why they are moving carefully.  It was very clear to they had only Evans' interest in mind.

They also were not sure if they needed to remove the growth plate at the top of the bone which would be very good for him.  They may have to in order to obtain clear margins but they need to research that further.

Option 1 is to have an expandable bone placed in his upper arm.  This will require multiple surgeries in the future in order to lengthen the bone as he grows.  The team has implanted this type of device in mostly lower legs and the lengthening process is usually on a monthly basis due to the fact that you want the leg to grow at the same rate as the healthy one.  In Evan's case since it is the arm and it doesn't have to be exact just symmetrical the surgeries can happen at larger intervals.  This prosthetic device in made in the UK and takes a few months to manufacture for Evan. The big question is: can the device be made for such a small person?  They didn't know and were going to find out so Option 1 may not be available.

Option 2 involves harvesting a piece of the smaller lower leg bone along with the blood supply and implanting it in the space that the cancerous bone was taken.  This implantation preserves the growth area of the implant and his arm should grow normally.  It takes a second team of plastic surgeons to take the bone from the leg so the time in surgery and complexity increases.  The lower portion of the implant will be attached with plates and screws.  His leg will grow normally as they are taking only a portion of the bone and it is the smaller of the bones.

One of the Doctors removed the plastic protective shield that was protecting Evan's fracture in the upper right arm. His arm looked great!  They removed the stitch that was there from the biopsy and ordered an X-ray to compare the new one to the first set.  There was nothing but good news upon the review of that X-ray!  First the fracture was healing over very nicely with new bone being laid over the fracture site.  The Doctor explained that the fracture had offset the bone somewhat and it was clear on the X-ray that in order for the body to try and straighten the bone, more new bone was being laid on one side as opposed to the other.  The other and most important bit of information was the difference in the tumor site.  The first X-ray showed a dark and well formed mass; the new one showed what looked like whitish cotton ball like structures in the same area.  The Doctor explained that the tumor was being worked on nicely by the first round of Chemo and that the Chemo was working!  We were simply amazed!

So I know that is a ton of information and we are still rolling all this around in our heads.  The team of Doctors will be back to us in a few weeks, probably by conference call or face time to give us more information on what they would like to see us do.  They welcome us going for second opinions but I am not sure that is going to be necessary.  One of the sites we considered to go to was CHOP in Philadelphia but one of the Doctors revealed that he did his fellowship at CHOP under the lead Orthopedic surgeon. It is apparent that this team will be consulting with the top surgeons in the Country on how to proceed.  We are reserving the right to seek second opinion as we go down the road to surgery.  It was also made clear to us that the Chemo treatments are the most important to Evan now and if surgery is delayed a bit it will have no bearing on the outcome.

Evan is due for next round of Chemo on January 16th so there may be a brief lull in posts until then.  his Uncle and family are due to arrive in Fort Myers on January 11 for a visit and mini vacation.  If anything of interest happens before the 16th i will post for all to see!

Thank you to everyone who is reading this blog and know I read every comment and appreciate any comments left.

January 09, 2014

Evan had another clinic appointment today to check blood counts and ANC levels.  Today his sister was along for the visit.  On January 06 his levels had plummeted  with very small white counts.  He has been receiving intramuscular Neupogen for stimulation of his marrow to produce more white cells faster since the ending of the first round of Chemo.  Today after only 3 days his counts have rebounded very nicely.  Today the counts are as follows: White cells 32.9; Neutrophils 41.0; Band Neutrophils 31.0 and ANC 23688!  Thank you Neupogen!

Since the levels are so good at this time Evan does not have to return to clinic until January 16, 2014 when his next round of Chemo is scheduled.  He is going to attend his VPK classes on Monday unless he shows signs of infection.  I know this is early on in the treatment process and there will be bad times ahead but it is nice to have some positive news early on.  Evan is beginning to lose hair so over the next week or so pictures will show his new and beautiful image!

Tomorrow is another big day for Evan.  We are traveling to the Moffitt Center in Tampa to have our first appointment with the specialist that will remove the cancerous bone and implant a prosthetic device for him.  I will be posting either Friday or Saturday on how that visit was and what the plan of attack is as well as the projected date of surgery.

January 06, 2014 Clinic Visit

Evan visited the clinic today to draw blood from his port for evaluation.  His color and spirits are good and he was playful.  His big brother Ethan came along for moral support.  Accessing Evan's port has become much easier and his anxiety over the process has diminished substantially.  The doctor felt prior to the blood work analysis that he would probably discontinue the nupagen (sp).

Unfortunately his blood work came back disappointing.  His white count is now 2.0 and was 11.5 a few days ago along with the neutrophils that are now 8.0 and were 77.0 a few days ago.  His ANC has also plummeted from 9200 to 160; so there is no discontinuation of the nupagen.  He has another appointment on Thursday the 9th to see if levels have increased.  Evan also is scheduled to see the Orthopedist in Tampa Florida at the Moffitt center on Friday the 10th.

 

1/2/2014

Evan had his first visit back to the clinic today after his Chemo treatment.  He had a mini physical and blood drawn from his port to see how his white cell, hemoglobin, platelets and ANC were doing.  The Doctor was impressed with his color and mood and decided that after the blood draw the port could be flushed with Heparin and the port could be closed and he could go home as he was confident his counts would be fine.  A few hours later the results were phoned into mom and they are: White cells 11.5; Hemoglobin 10.2; Platelets 243 and ANC 9000.  His next appointment is on Monday.

Evan has been resting well since his breakout from the hospital and had an enjoyable New Years Eve.  He was able to watch a home grown fireworks display put on by his Dad.