July 12, 2013

Not sure how much bad news I can take.
We got email from the doctor, he prefers email and you will see why.  After the scans yesterday, things are worse than we thought.
I will post some of the email here:

Cody’s scans yesterday show what we already knew about, but more of it.  There has been, as we discussed was likely to be the case, interval growth of most of his tumors, including the tumors in his lungs and his lymph nodes in the chest and the pelvis, and in the bones, as well as the appearance of new lung metastases and new lymph node metastases just below his liver.  There is a small amount of fluid accumulating in both of his lungs (pleural effusions), though they are not large enough to cause breathing problems. There is an enlarging metastasis in his pancreas. There are bony metastasis involving his ribs, sternum (breast bone), multiple vertebral bodies, and probably his right femur (thigh bone).  We will likely give him a medicine that Dr. Farooki may have already spoken with you about (Zoledronate, also known as Zometa) to try to reduce the risk of him fracturing one of his already-soft, and now weakened bones.  On PET scan, there is a finding of uncertain significance in the lower part of his colon (large intestine).   I am trying to reach our radiologist to see if there is any additional imaging that might help us learn more about what this finding represents (and if there is, we will ask Cody to come in over the weekend to have the study performed). 

Based on what we saw on yesterday’s scans, specifically the enlargement of a lymph node in his chest cavity that is pressing on his left atrium (the filling chamber that accepts blood from the lungs back into the heart before it is pumped out to the body via the left ventricle) and pulmonary veins, we called him and advised him that we did not think it safe for him to fly to Georgia – both out of concern about the safety of flying as well as out of concern that if he became unwell while out of town it would jeopardize his getting back to NYC safely other than by air ambulance.

Cody is, as I think you both understand, facing an even more difficult battle than he was faced with going into his transplant 4 years ago.  I am, nonetheless, optimistic that we can offer him treatment that will help him feel better and make his cancer better for a while, and hopefully can do so without making him too unwell.  As we discussed, the unknown variable at this time is to what degree his prior therapy will make this therapy more toxic and/or complicated to administer.  For now, we are committed to start chemo early next week immediately following his line placement;  based on the late hour at which he is scheduled to go to the Operating Room on Monday, he will start chemo on Tuesday.  We can certainly send him home with overnight hydration on Monday night to facilitate the earlier administration of chemo on Tuesday.

No words...this photo was taken about an hour ago....

July 11, 2013 PM

Home after a very long day.  The morning seemed like things might be rolling after we met with pre surgical team for the mediport operation on Monday.  Then we went down for the MRI.  I left for 10 minutes to go eat and they called me.  He could not do it because of extreme pain in his groin.  I know he has trouble sleeping and I always find him in the same position each morning.  Finally he asked for pain meds.  He got some morphine so he could get through the pet/ct scan.  We are doing scans again to have a clearer picture of what has been going on the past 3 weeks and before we start chemo on Tuesday.  After a very long wait, the scans were completed.  Cody is patient and he was getting annoyed.  And the poor thing was starving.  We finished there at 4 and got a quick bite and headed home.  We were just about to pull into the parking lot at the coliseum for the game and event when he got a call from Sloan.  The NP (nurse practitioner) told him that there is a lesion in his lung close to a vein and they could not risk any air pockets to get into his lungs and therefore he could not fly so the trip was off.  I heard it in his voice.  He was upset and pissed.  He then began to ask a few questions.  I think it is hitting him and he is getting scared.  He is strong as hell but he is getting worried.
Thank goodness we had the game and his friend Nikki was there to meet us.  We sat with Jeff another guy he knows from there.  He loves it at the coliseum.  He says hi to everyone he knows.  They love him too.  I had some tears with our good friend Ann and she is the one that contacted Richard Park for Cody.  He is Cody's special friend from the team.  It was good to see Cody so happy and enjoying himself.  My heart breaks for him.  There is a beautiful church by Sloan and I have been visiting there often.  I pray and thank you for your prayers too.  Good night.
By the way, we missed our friend, Matt.  Hope all goes well with him tomorrow.  He detached his retina...ouch!

July 11, 2013

We had a nice evening yesterday.  Cody wanted to see Blue Man Group so we went with Meghan and Moira (see previous post.)  It was a great show.  Very uplifting and we both laughed a little.  Sometimes I feel guilty doing something fun.  As we sat there, I couldn't help but think about what is growing inside Cody's body and all those around have no clue.  I think he pushed himself but he smiled.  I am waking him up now as we need to head in to Sloan for scans, CT scan, PET scan and another MRI.  Hopefully he can take a few catnaps.  We are going to the game tonight.  He is leaving tomorrow morning for Savannah.  Guess he can sleep on the road then too.  My brother, Roy is coming on Sunday.  He is actually meeting Cody at Newark Airport and they will ride here together.  It will be good to have someone to sit with while he has his procedure for his mediport and then to be there for Tuesday when we start.  Thanks, Roy (and Veronica.)
Off to wake up the king...yes, he is a king...HSE Homecoming King, 2010.

July 10, 2013

First I need to say thank you to my great friend, Corinne Short for setting up the online fundraiser.  I am so lucky to have such great friends and family to be there for us through this.  

I think it is hitting Cody in spurts.  He will have his moments I know.  I will be there. 

Next to Cody's treatment and well being, I am worried about my job.  I will figure it out and it will work but it is added stress.  Spoke to my family last night and we are trying to figure out a way to get everyone to take turns flying up to help.  I know I have everyone here too but it is hard when you have a 20 year old.  Not sure how his body is going to be so we will just have to see.  

On the way home yesterday, we were trying to think of things to occupy the time.  He suggested seeing Blue Man Group again.  He is a drummer so this is right up his alley. He has been trying to get with Meghan, Moira's niece that just battled her own cancer and so we invited them and we are going tonight! That will keep us busy for today, something to look forward to.

Tomorrow night is the hockey prospect game and he has invited his friend to go and we will see some other friends there.  He has scans all day tomorrow so we will go after that.  

Still not sure if he is going away to see Savannah.  Also have to see if the drs will let him fly alone.  I am not too keen on it but he is an adult.  (In my eyes, he is still my baby.)

Trying to wrap my head around this and remain positive for his sake.  It has to be affecting him and there will be those times.  I keep questioning this and know there was a misdiagnosis.  Kills me.  

So much to sort through.  One day at a time....

July 9, 2013

After a long wait this morning, we finally met part of the new team of drs that will be taking care of Cody's treatment.
Dr. Wexler, Cody's new primary doctor,  told us that the tumor grew in his groin first ( it was told to me the other way around and that is what I posted yesterday) and has metastasized or spread to his lungs, lymph nodes and some other bones. Chemo is starting next week and we need to do the best we can. He will get a temporary line or mediport on Monday or Tuesday.  This disease is not curable, like the leukemia was with the stem cell transplant.  It is treatable and with the hope from Dr. Wexler, he will get this.  The chemo is harsh, 2-5 day a week cycles of potent chemo.  After 9 weeks, we do the scans again and pray the tumor shrinks.  Radiation to the groin with most likely occur and/or surgery could be an option at that point to remove the tumor. Then the next phase begins.  It is a bit tricky since it has spread and also since his body already knows chemo.  This is an aggressive cancer. They usually do not see Ewing sarcoma as a secondary cancer which makes it trickier.  They are using standard chemo as his body won't be able to handle the more harsh one.  They want us to do some genetic testing as this mutation could be genetic.
Cody is doing ok.  I think it is starting to sink in.  He is worried about school and his new internship.  I will continue to reinforce that there is one thing important right now and that is getting better.  We have the next few weeks to figure this all out and to pray for everything needed to get him better.  He is most likely going to see his brother this weekend before it all starts.  He needs that and so does Casey.  I need some time to talk and be with friends and get some things organized.  We begin on Monday or Tuesday.
Please know that I am so very thankful for all of the support from all of you.  My phone never stops and my facebook page is full of prayers.  I am most grateful.  I know you are all praying and please continue that.  Every little bit helps.
XOXOX

July 8, 2013

It's Ewing's sarcoma.  It originated in his chest and spread to his groin area.  It's bone cancer.  We meet our new team of drs tomorrow.  Please pray.
July 14, 2013 Correction: It is Ewing's but originated in his muscle in his groin.  Spread to too many parts of his body to list...read current posts.  Thanks...and pray.

July 6, 2013 Saturday

Still no news other than they have to run the tests again.  Cody was supposed to go to VT with his dad's family but he keeps saying he is lazy.  I think he might be but I also think he is a little depressed.  I see him compensating with his leg.  He stands differently and seems to be uncomfortable.  When I wake him in the morning, he is in the same position.  Guess he just gets comfortable and doesn't move. He is starting to have trouble sleeping.  So my goal is to keep him busy.  Today we did not do much but yesterday we went to the Short family pool.  It was so nice.  A few other friends were there so we played with the little ones and cooled off.  

So we continue waiting....Hoping we get into Sloan Monday or Tuesday.

Enjoy the rest of your hot weekend!