July 31, 2013

So first the good news and then I will tell  you about the day we had.  So the tumor in the colon is a polyp and does not require surgery at this time...A little good news to make me cry with happiness.  He does not need surgery and chemo begins again on Monday.  Power in prayers!
So Cody was in some mood and insisted on riding the train alone.  I was beside myself.  I drove in and he rode the train.  I actually got there before he did.  We left home at 5:45 am.  He was scheduled for an MRI at 9 am at the other Sloan facility a few blocks away.  He was in the IV room getting a push of dilaudid, the pain med so he could lie flat for the MRI.  The nurse was pushing it in very slowly.  Cody felt it immediately and was getting silly.  Next thing we know, he says everything looks blotchy and he is out.  His head goes back and he nearly slides out of the chair.  VERY quickly the nurses come in and he is lifted to a wheelchair and they are checking pressure and giving his smelling salts and he is rushed to the back in the bed area.  His pressure is low and they start a bag of fluids to flush the dilaudid. He slowly wakes up and doesn't know what happened.  He is very groggy but comes around, thank goodness.  I cried all the way there today so my emotions were raw.  I lost it.  Thank goodness he did not see that.  So this makes us late for MRI.  Uncle Jim comes and helps me wheel him 2 blocks to the MRI place at the other location.
We get in and they tell us we are late and that they do not have room.  I called his drs back and within about 30 minutes, they find room.  He was not told that he had to drink 3 bottles of a barium mixture so they could see the colon better.  He finishes one and is very nauseous and shaky.  Around that time, the supervisor comes out and says to stop drinking.  We don't know why.  Then we get a team of drs there to tell us that he is not getting an MRI but a CT scan.  They were in touch with our drs and agreed that a CT scan would give a better picture of what they are looking for.  So we are waiting for the CT scan. Finally they fit us in and failed to tell us that he needed a rectal barium.  The solution would be an enema injected via a catheter into his rectum.  Of course he was not too happy about it but at that point we just wanted to get it over.  And we did.  He did well and we left and headed back to the main hospital.
We were there waiting for the PET scan.  We checked in and he was waiting to speak to his psychiatrist.  The team apologized for the mix up and Dr. Wexler came out.  He came right over and told Cody that the tumor was actually a polyp and that he would not need surgery.  We are leaving it alone for now.  We are to report Monday and start chemo again.
Now I have to work on his metal state over the weekend.  I am calling tomorrow to get set up with the counseling center for next week for myself.  Hopefully we can relax a few days and get through this.
I am ready for bed now....good night.

July 30. 2013

Tuesday-Dr. Wexler called this afternoon and said they want more imaging.  They usually do not do this at this stage but they need to see if the chemo is working.  They will do an extensive MRI of the colon and a PET scan of the body to see how the metastases are responding, if at all. If they are, then we will have one discussion which will include the surgery to remove the colon tumor and re-sect it and then the ileostomy bag for 9-10 months.  If it is not responding, then we have another discussion.  It is very stressful here.  Once again, I am the punching bag.  He now thinks he can go in alone tomorrow and has asked Uncle Jim to meet him there.  I am going regardless and he tells me if I go, then I cannot hear any results.  The doctor has asked me to attend.  It is really tough right now.  I am reaching out to his old doctors and the psychiatrist for help and guidance and support.  I know I need help too and will work on that once the plan is made out.  I am trying to be positive and doing everything I can but it is hard when you keep hearing bad news.  Pray for good results tomorrow.

July 29, 2013

Frustrating...I wish I had something to report.  We went in for blood work and to meet the drs.  His counts are still low which is expected.  The team of drs, pathologists, the bone marrow team, the surgery team and the tumor board  and everyone are meeting tomorrow at 2 to discuss Cody and hopefully figure out a plan.  We are going to get a call in the afternoon.  We saw a new dr today so it is hard to read everyone.  Cody is still neutropenic so he is not too happy about that.  Home cooking...again.  And he loves to eat out!
Once again, I need to say thank you to my beautiful friends, near and far.  I am truly touched and blessed by all the support.  I cry every time I read something or hear a phone message.  I am blessed that way.
Casey and Nicole are home safely.  I miss them already.  Cody says he feels lazy today which I think means he is feeling depressed.  It was hard to say goodbye but I am certain I will get them back here.
Cody is getting frustrated and angry I think.  Of course I get to be the recipient of that.  We had a heart to heart today and he saw me upset and I let him know that I am scared.  I told him he has no idea how many people care about it and are praying for him.  He seems to think he can do some of this alone and I know he can. But there are limitations.  I get that and will work with him.
I will post tomorrow when I hear something...here are a few pictures from last night...

July 28, 2013

Sunday...we had a nice day.  We were lazy all morning and visited with our good friend/neighbor, Sue.  The boys grew up with her.  Then we went to Dave and Buster's.  Everyone had fun there.
We watched a movie and the soccer game and just enjoyed each other's company.
We were very happy to have dinner made for us by a great friend from work with a huge heart.  Thanks Allison Saber, we all enjoyed it!  We took a ride to Rita's and then the Casey, Cody and Nicole went to visit a friend of Casey's.  They are playing pool over there for a little while.  It was so nice to have Casey and Nicole here.  It was a short visit but we enjoyed every second.  Kinda takes your mind of things for a few minutes too.  It will hard to say goodbye.  So no one would pose for photos so I had to get the best I could.  I will try tonight.  Here are a few pics from today.  Love my boys...xoxoxo
We head into Sloan in the morning and will hopefully have an idea of what we are doing...

July 27, 2013

Saturday-Good day today and Cody felt pretty good.  He got his head shaved and I mean shaved.  Casey did a great job.  We hung out here and out and thanks for the visit Mary and Kevin!  We swapped out a fish since one was getting beaten up.  Cody was so worried about it.  Then we went to Nicole's family's house for a bbq.  We sat around and visited Nicole's family and also our friends, the McGowan's.  Always good to see them.
I am truly touched with the generosity from friends.  Most of my friends I have met through work.  It brings me tears of happiness and tears of sadness when I open up the cards.   I am happy and feel so loved but so sad that this is happening again.  I feel fine one minute and then tears the next.  I spoke to my good friend, Roseanne from work today and it was hard to get the words out.  I try to smile and have a good time but inside my heart is hurting.  Thank goodness I have all of you to support me in every way.  I am blessed.  I know I have said that before but there are no other words.
Tomorrow is our last day with Casey.  I think we are watching a movie and then maybe Dave and Buster's.  It was so good to have him here.  I hate that we live so far away.  He will come back.
Thank you again for reading...xoxoxoxo

July 26, 2013

Friday-We had a pretty good day.  Cody finished his IV fluids and Casey (a trained EMT) de-accessed him.  What that means is that the 2 lines going into his mediport could come out as we were not needing the lines anymore while at home.  I have not done this before and learned with Casey but Cody really wanted him to do it.  All was successful and without any complications.  We then all went to the movies, Cody's friend and his dad included (oh joy) and it was ok too.  We hung out at home and just did burgers and hot dogs on the grill.  Cody's drum teacher and our friend, Bobby stopped over and so did Ben, the neighbor kid they grew up with.  It was great to hear them sharing stories and laughing.  It was a busy day and Cody said he is feeling a little better.  He is hydrated and this upcoming week he is supposed to feel better.  His wisdom tooth is coming through and causing lots of pain.  Hoping we can get that taken care of next week too.  His hair is starting to fall out so he will be getting it shaved today. I know that bothers him but he is staying upbeat and wants to put some fake tattoos on his head.  We will see.  It's Saturday morning and all is quiet.  We are having dinner at Nicole's house tonight with the ex and his wife included.  Maybe we can show up late??

July 25, 2013

Long day but ended with both of my boys and my daughter in law all tucked in.  I love it!
Casey and Nicole missed their flight this morning but were still able to get to us around 1:00 at Sloan.  Cody was not feeling so great this morning.  He kept saying he needed blood.  We later found out he was dehydrated.  We talked with the drs about the plan for next week.  The biopsy did not show Ewing's sarcoma but the drs still feel it is.  It is non specific.  They are still trying to figure out what is the best plan of attack and have considered a 3rd option of putting a stint in the colon.  That way if the hole was created it could work as a barrier and not allow any leakage.  We should know more when we return on Monday.  It is a very dangerous situation right now and he needs to watched closely.  Today he got fluids and platelets.  He did not need blood.  We sat a lot but it was nice to have Casey and Nicole there.  One of Casey's friends came and we went upstairs to play a game while we were waiting.  Cody loved having everyone see Casey too.  We are all very concerned and very scared to say the least.  I see Cody losing weight and not looking so great.  His hair will probably begin to fall out.  We got home late today, tons of traffic and made dinner for Cody since he cannot eat out and we ordered Chinese food.  We played a short game and had fun looking through a time capsule that Casey had here. He made it in the 4th grade. Good laughs.  I love hearing my boys laugh!  The house is quiet and feels like old times.  I love that.  Tomorrow we are planning on a movie, depending on how Cody feels.  He came home with a backpack of fluids and we will de-access him tomorrow here at home.  Casey is an EMT so he has no problem doing it.  I will be in touch..thank you all for reading...xoxoxo

Thursday, July 24, 2013

Cody woke up feeling nauseous.  Thank goodness it did not last long.  He had plans to meet his advisor at Dowling.   He told me he wanted to switch majors, that he feels he will not be able to do anything sports related like he wants.  His friend was going to ride with him but she backed out.  He wanted to also get his pottery from his ceramics course.  I was so nervous about him driving alone.  He does not realize how sick he is.  He did it and came home exhausted.  He said the walk was so hard.  Cody has to find these kinds of things out on his own.  And he did.  He barely had enough energy to eat his lunch.  He took a nice nap.
Cody's psychiatrist from Sloan called me.  She was reaching out to me and she is devastated too.  I cried and she told me how sorry she is.  She wants me to go to the counseling center there at Sloan.  It is on 52nd but she highly recommends it.  I had expressed my concern that Cody does not seem to get it or maybe he does not understand it. She thinks he does, only that he is taking it in in small doses.  We talked about his relationship with his dad and where I am with all that.  I am honest with her and I think she gets it.  She has known us for over 4 years now.  She saw it.  It was a good conversation and  she said this is really bad.  I hate hearing that.  My heart is broken.
Cody had a slight fever this afternoon which got me packing.  I think it was elevated because he was sleeping.  I am keeping my fingers crossed for a peaceful night.
We are so lucky to have so much amazing support from my friends.  I am left speechless each time I open a card or package. The tears flow and I am so grateful.  Thank you to all of you, you know who you are! I am blessed to have such an amazing and huge extended family here.   Thank you to Grace for dinner tonight.  That was very sweet of you.  Moira is always on standby for the dogs.  That is a huge relief.  Craig, Sue and Emily take care of the mail and the fish.  We appreciate all that.  Everyone is a phone call away and ready to help.  I know that.  For this, I am grateful too.
It will be so nice to have Casey here tomorrow. He and Nicole are meeting us at Sloan. He is so cute, asking me if I want him to wear his uniform.  He knows I love seeing him wearing that so proudly.  The kids at Sloan will love that.  Some of the cousins are coming on Saturday and other than that, we have no plans.  I am hoping Cody is allowed to eat out but we will make due if he can't.  I think a movie is in the plans too.
Tomorrow we will learn about the upcoming procedure and get some questions answered.  We will have a huge week ahead and will need tons of prayers.
Thank you and LOVE YOU ALL!!

Wednesday, July 24, 2013

I emailed the drs this morning after we did not hear anything last night.  The drs asked me not to share with Cody as they will tell him tomorrow.  He will be getting the surgery to take out the affected area in the colon.  He will be getting a colostomy bag while it heals.  We do not know the exact day as it all depends on his recovery of his counts.  His platelets and red blood cells are dropping and obviously this could be dangerous.  They do not want to stop chemo as it would also be too dangerous.
Tomorrow we head in for a count check and Casey and Nicole get in nice and early so they will meet us at the hospital. Today Cody wants to go to Dowling to see if he can pick up the rest of his pottery and also talk to his advisor.
I will keep you posted...for now...prayers needed..thanks!

Tuesday, July 23, 2013

We got to Sloan nice and early.  We checked in and went to meet the rehab dr only to be called back to the 9th floor because his platelets were low.  The dr called us in.  I had emailed him last night asking him to please talk to Cody.  He is not understanding the seriousness of this.  Dr. Wexler explained that the tumor in the colon grew on the outside and has worked its way through.  The very serious concern is the hole that will be there once chemo kills it.  This would cause bacteria to enter his body.  He said he is waiting to discuss with Dr. Laguaglia, the surgeon.  It will need to be taken out and we are not sure whether a colostomy bag will be in place.  They are discussing it today and should get back to us later today.  Cody is neutropenic which means : Neutropenia, occasionally spelled neutropaenia or neutropoenia, from Latin prefix neutro- (neither, for neutral staining) and Greeksuffix -πενία (deficiency), is a granulocyte disorder characterized by an abnormally low number of neutrophils. Neutrophils usually make up 50-70% of circulating white blood cells and serve as the primary defense against infections by destroying bacteria in the blood. Hence, patients with neutropenia are more susceptible to bacterial infections and, without prompt medical attention, the condition may become life-threatening (neutropenic sepsis).

This means while he is neutropenic his diet has to change.  Basically no raw anything, no fruits or veggies with skin.  No aged foods, like cheese.  Nothing cooked outside the home.  
Kinda makes life a little difficult but we can deal.  We did it before and can do it again.


I will update later if we get more news.
Thanks, guys...xoxooxo

Monday, July 22, 2013

Another quiet day.  We did get out and go to lunch with our good friend, Jean.  Thanks for lunch! Cody felt nauseous during lunch but managed to eat a little.  Then we went to the fish store to buy some more rock to add to the tank.  That place always brings a smile to Cody's face.
We came home and he crashed for a long nap.  Just what he needed.  To me, he looks sick, his eyes are sinking in and his color is off...I hate  this...

July 21, 2013

Sunday...and quiet.  Cody wanted to just relax today.  I ran errands and got some groceries, finally.  Thank goodness, he is still eating.  I think this upcoming week will be tougher.  His friend Nikki came over to watch a movie and he just goes from one couch to the other.  I sat with my neighbor and good friend, Sue to get her caught up.  She and her family have been a HUGE help to us each time we leave.  We are lucky to have them.
So tomorrow looks like another day of rest.  Our appointment is on Tuesday.
Keep praying...xoxox

July 20, 2013

Thank goodness we cooled the house down.  That'll teach me to not go too long without the ac on in here!
We had a good day.  Cody woke up feeling pain in his left side.  We called the dr right away and he said to take pain meds and if it gets worse to call back.  Cody was up around 9 as I know he was worried.
His uncle from PA and cousin from Charlotte came to visit today.  We picked them up at the train and had a nice lunch then they came back here.  Cody wanted to take his cousin for a ride in the mini. I know Cody was happy to see them.  It was nice of them to make the trip, long train ride from PA.  Then our good friend, Moira brought Xena back.  You really could tell she missed Cody. They both are staying close to him.  They know.  We ended up watching a movie with her and then went to get something to eat.  We just got pizza as TGIF's was too crowded.
I am attaching some pics from the past week.

July 19 , 2013

Friday- we had an ok night.  Cody was able to take a shower.  He had to wait because of the mediport stitches.  I think he took 4 showers between yesterday and today.
We got to Sloan around 9:30. He had to be accessed which means the needle into the mediport so he could start his IV for the colonoscopy.  He got called in rather quickly and did not want me or his dad to go in.  I think he is trying to be strong especially in front of his dad.   His dad left at that point.  Cody was texting me from the back but I never asked if he wanted me.  I have to give him some independence.  I am trying and it is hard.  They finished rather quickly and then I was called back as he was waking up.  We were waiting for the dr to come in that did the scope.  I saw another dr walk by.  He was Cody's gastro dr and actually did my suspicious colonoscopy maybe last year.  H was shocked to hear the news.  So they did see a tumor outside the colon,  It was definitely not a polyp.  The dr took a few biopsies and tattooed the area so it could be monitored.  She was hopeful in that chemo could and should be able to take care of it but she was not sure.  The colorectal oncologist would be looking at the pictures and also the sarcoma team.  On the way home, we had just left and was about to get on the LIE and one of the drs called. He almost sounded like we should come back but just wanted us to be sure that if any fever or pain developed we are to call right away.  It is always scary coming home.  I am trying to give Cody his space but it is hard.
It was really hot in the house, only window units and they were not doing the trick.  Finally it got cooler upstairs in my room and we watched a movie.  I think he loses steam by the end of the day. He is having some jaw pain which is from the chemo.  He just lies around. .  I am attempting to sleep upstairs and leave him be.  He will call or yell if he needs me.
My heart hurts for him.  He has missed so much and was just getting his life in order.  He is feeling depressed, I know.   The dogs make him happy as does his fish tank.  I keep the comedy movies handy and these make him laugh too.  Casey and Nicole come on Thursday.  Cody's cousin and uncle are coming tomorrow and we will see some friends.  Have to stay busy.....thanks for checking on us...xoxoxo

July 18, 2013

Thursday: we had an ok night.   It is hard to sleep with the Iv going and then getting up evey 2 hrs to make sure he urinates.
Today the routine was to see the drs and then go to the bed area of the PDH- the pediatric day hospital. The doctor today discussed the colonoscopy. If it is a polyp on the inside it can be removed.  They are hoping it is not a tumor.  There is a chanceof a bigger procedure happening tomorrow too.  He got hooked up to more fluids and anti nausea meds.  He got a shot today to increase his white blood cells to help when his counts start dipping.  He did well but definitely seems to be getting depressed and quiet.  A nurse we had from another floor came to visit him today.
He could not eat anything today for the prep and is sitting here now trying to get the prep solution down.  He is doing well.  I have been to the drug store 2 x since we got here at 3:30.  I had to get Tylenol for his headache and Gatorade code the prep.  I bought sheets and towels for here so we can just leave.  Part of the lower cost here is there is no housekeeping.  You have to do all the laundry and clean the room.  I got that done and will vacuum before we leave.
Tonight there are no iv's and he got to take a shower which was so nice for him.  We should be able to sleep better.  We have to be back at Sloan at 9:30.
Please pray for a routine procedure tomorrow....thank you.

July 17, 2013

Cody had a pretty good night. We were up and at sloan at 7:30am. First ones there and last ones to leave.
So it looks like the procedure is to meet with the drs each morning nice and early and then we discuss the plan for the day. They actually cut back one of the chemo drugs.  I think they cut back because of the spot on his colon.  I am sorry if I am repeating myself.  Chemo will leave a hole in the colon and this would cause bacteria to back out which is not good.  Surgery would needed to remove that section of the large intestine. Cody gained 8 pounds from the fluids last night. It is expected but everything scares me.  They will be doing a colonoscopy this Friday. He will do the prep tomorrow.  Not going to be easy.  I sometimes wish they would leave him alone but I know he needs help.
My brother left today.  It was great having him. I know he will return.  Cody enjoyed his visit and he was a big help.
We played some games today and Cody felt pretty good.  His dad waited for us to leave and Cody decided he wanted to go to McDonald's by himself.  I begged him to not go and to let me or his dad go with him but he said he needed some time alone.  It is so hard.  He did it, of course and was fine but could not get into bed quick enough. He is trying to be so strong and to not change anything.  He is hooked up to a Iv bag of fluids in a backpack.  I know he is getting weaker and I don't want him to be alone in case something were to happen. It' s so hard.
I hope he gets that we need to stay here at Ronald house for each week of treatment.  It would be too much to drive back and forth after these long days here.  We get done at like 6 and have to be here at 7:30.  The other days we can do it,  We might even be able to get bloodowork done from home. He asked if he could stay here alone when I go back to work.  We all know the answer to that.
So with that, pray for a good night of sleep for both of us...and prayers for healing..

July 15 and 16

Monday: got to Sloan nice and early. My brother, Roy came in last night.  Cody got all situated and we got him comfortable so he could do the MRI. It went much smoother. Thank goodness. Then we had to wait until the mediport procedure. Because he is technically an adult, we were able to go to the rec room on the 15 th floor. It passed the time. He had fun playing foosball with his uncle. Finally at 3:30 we were called down to surgery only to wait there much longer. He went in at 6:50. I guess Roy and I saw him around 8:15. He did well. He woke up and we were in a taco place up the block by 9 pm. He ate 4 tacos and felt great. Just a little sore.
He crashed immediately when we got to the room.
Tuesday: we got to Sloan at 7:30. We met Dr. Meyers, another dr on the sarcoma team. He told us that the MRI did not really give them much more info. I did speak to Dr. Kernan, his transplant dr, she came to visit. She says there is something there in the large intestine. They need it know if it is inside pushing out. One concern is that chemo will leave a hold there which could cause bad infection  from bacteria in the bowel and it leaks because of the hole created from the chemo. If it does make a hole, he will need to have that part of the intestine removed.
He had the chemo and did well. No nausea. He ate a good lunch and dinner. He slept a good part of the morning.
We have so much support here. We know so many. I do my best to stay together when I am with him. But the second, I walk away, I lose it. We saw a family here we knew. She was speechless. It's so hard. Cody keeps me smiling so I stay with him.
Thank you for checking in with us.
Thank you for all the texts, emails and phone calls. It all helps
Casey and Nicole come on the 25th. My dad is going to come for the next round of treatment. He wants to be here when he can help.
Again thank you.

Sunday, July 14, 2013

So we were off nice and early today.  Got to Sloan in no time and then the troubles began.   It was hard to get an IV in.  He needed it so he could get pain meds, morphine for the MRI.  It is painful for him to lie flat.  So after about 8 tries in each arm, we got a vein.  So the morphine is going in and his arm starts tingling, getting red, and then the hives come.  Now the morphine is already in.  So quickly we give him Benadryl and pull the IV out.  Now we lost out MRI appt.  He asks for something for anxiety so they give him his ativan.  So we wait until they can get us in and we give him Dilaudid, another pain med.  It makes him very loopy and he starts being rather silly.  So he finally goes into MRI and he is still too uncomfortable.  So the dr and nurse come down and he gets another dose.  He is resting and taking a snooze and they get the MRI or whatever scans they can.  He comes out and is so groggy.  We get food and walk to the block to see his cousins for 30 minutes.  Then as soon as we get in the car, he passes out.  He sleeps all the way home and then goes right to the couch.  We left his IV in his hand.  We get home and there is blood in the line.  I make the call and run to PM Pediatrics to get flushes because the ones here are all expired.  Fun.  We go to meet Roy at the train and had dinner.  He is watching a movie with his friend.
I am worried about what the scan will reveal.  I have so many questions.  I will keep praying...
Tomorrow we will leave here at 7 and get another MRI of the pelvis and femur bone.  Today was of the colon.  And then he will get the mediport for the chemo.  Again, I pray....

July 13, 2013

The day was pretty quiet.  I do see that Cody seems to be getting weak.  It is hard for him to stand and he often uses support.  He was rather quiet but did enjoy a visit from an old friend, Ben.  Ben lived on the next block and the boys, meaning Casey, Cody, Ben and another friend Tom used to play together non stop.  Ben was there at the beginning of Cody's leukemia battle and he was here today.  The pic is below.
A friend from work 'ran' into us at Chipolte.  Thanks for the company, Bern.  I am glad we got to visit and see the new you.
Tomorrow is the MRI of the colon. Cody will get more pain meds and I hope he can do it.  His cousins are meeting us in the city and coming out here for a visit.  Then my brother,  Roy will be here later.
Looking forward to that.

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!

July 2nd, 2013

Well, we made it back home.  We thought we were coming here to head to Sloan today but.....they are running more tests.  I am really anxious and so frustrated.  Cody seems to be in pain and cannot sit for long periods.  I really want to get this out and get this behind us.  Hoping we can at least say we are going tomorrow.
Florida was good.  It was good to be with family and Cody was happy.  We were with Casey and Nicole too.  They left yesterday too.  Cody went shooting and to the movies.  We all went to the beach, the water park and rented a boat for the day.  I spent some time with dad and Bonnie and even took a walk on the beach with my dad.  Can't remember the last time I did that.  We had a birthday dinner for he and Bonnie and my nephew and great nephew came too.  We had game night and Cody and my brother had their own jam night.  He needed that too.
We got in late last night.  I know there was some down time for Cody and he was sitting with his head low.  We are hopeful that we will get this horrible disease growing in his body OUT and gone.  I really want this behind us.  I know we have a rough road ahead but am hopeful we can control this.
Please add Matisse (Cody's cousin that has leukemia too) to your prayers.  He was admitted yesterday for some infection.
I will write back when I have some information.