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.

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.