June 24, 2013

Malignant.  The biopsy on Cody's groin is cancer.  We were at Sloan most of the day.  We saw our BMT (bone marrow team) and then he got cleared for the procedure.  He went to talk to his psychiatrist.  She said he is avoiding it.  He is twitching like crazy.  He went into the procedure room and I actually heard him talking.  Dr. Laqualgia came out and I saw the containers of the fluid.  It was a clear but kinda bloody liquid.  He told me to stay put and that he would be back.  The do something called a frozen section.  This is used in the operating room when a dr has a patient open and is checking for other cancer.  It takes about 20 minutes and the cells are frozen and then split rather quickly to see if say, the patient's organs are cancerous.  That the dr can remove what he needs to right away while the patient is still on the operating table.  I go into the little recovery room to see Cody.  He is awake and being his usual funny and charming self.  He gets up and we walk to sit back out and wait.  There is a door on the other side of the procedure room where the drs go in.  I can hear several footsteps and one if Julie, our np who we adore.  They open the door and usher us into the room.  Dr. Laqualgia says those words.."it's a tumor and it is malignant." I am blank for a minute.  I turn to cry.  I am ushered to a chair.  Cody is just standing with that look on his face that I have unfortunately seen before.  We calm down and begin asking questions that surface right away.  Cody looks like he just needs to get out of there.  I then ask if it is coming out?  Will Dr. Laquaglia be doing it? Cody chimes in with his humor, his coping mechanism and asks Julie to do it.  I made a not so nice comment about his 'junk' and then we end the meeting.  I was worried I had offended someone but later apologized.  Not the case at all.  We were told to go to FL.  We had canceled the trip on Saturday due to this biopsy.
I cannot begin to tell you how much my heart is hurting.  I am angry, upset, and scared. I do not wish this on anyone but why do we have to do this again??  I do not get it.  It is not fair.  I am so hurt.  I am so worried about my son.
The next step is to identify it.  That will come after more pathology reports on Friday.  Then we will meet next week to begin the discussion of treatment.  Mediport, chemo, vomit, sick, fever, .........All over again. I will do my best to keep everyone posted.
We are leaving for Florida at noon.
xoxoxox

June 23, 2013

Sunday night..the plan this weekend was to keep busy.  On Friday, Cody was very tired so he did not go to his friend's house.  We grabbed a quick bite to eat and chilled here at home.
On Saturday, we ran some errands and got lunch and he went to see Superman in 3-D with Moira.  He had a date with a 40 something year old.  Go Cody!!  I went to get my nails done and drove to my other friend's house, Corinne.  Again, we need to stay busy.  Cody and Moira met me out there.  We cooked out and had a fire and roasted marshmallows.  It was good to be with friends.  Today we drove to Riverhead and went to the aquarium.  We went with my friends, Mary and Corinne and their hubbys and kids.  We took a boat ride and went to a beach and searched for sea life.  We had a fun time watching the kids have fun.  We ended the day at the diner.  Just hanging here at home and thinking about tomorrow.  I know we will get through this, no matter what.  We have to.  Keep praying and pray hard!

XOXOX

Questions

June 21, 2013
So it has been a week from hell.  After the ct scan, they discovered that Cody has nodules all over his lungs, too many to count.  The next step was a PET scan.  We went to that on Thursday.  This shows all the organs and the hot spots or any active areas.  Well, he showed up several active areas, including his groin.  Now we have been treating the groin for quite some time as a strain.  Well, it is not a strain.
An MRI showed it to be a 4 inch tumor.   So now we biopsy and pray for the best.  There is concern because this whole mess is complicated, and that is a quote from the drs.  The surgeon wanted to biopsy it today without anesthesia but Cody was too nervous.   It is very upsetting and Cody is being strong.
I break down every second. So scared.  Please pray for us.  We should know by late next week.

Nodules

June 18, 2013
So we went to PM Pediatrics on Sunday, Father's Day.  Cody has been having some back pain and he wanted to get it checked out.  So an xray was ordered.  He ended up having 2 nodules on his left lung, not even where the pain in.  We got scared.  Called Sloan and could not get through.  We found out last night the reason for that was that one of his drs had a heart attack and passed away suddenly.  Very upset by this.  So this morning, very early I dropped him and Brittany off at the train.  Brittany was his girlfriend during the beginning of all this.  Not sure what her deal is, I know she has a b/friend.  Just being a great friend.  Cody insisted on going alone, without me.  He is doing it with contrast and will be drinking that yucky stuff.  We should get a preliminary report today.  I am scared but praying for the all positive results.  Our friend, Meghan got clear scans so hoping this karma is passed along!
Please keep Cody in your prayers.  We leave for FL on Saturday!!

4 years later....June 4, 2013

Dear Friends and Family,
Four years ago today, Cody received his stem cells to cure his body of leukemia.  It was a day of reflection for us.  Last night Cody opened a bottle of Jones Soda and the message on the cap said : and I kid you not-"Tuesday is an important day for you".  We were both stunned.  Today was more than important.  We call it Cody's rebirth day.  By 'we', I mean me and Cody.  We are a team and have been since his diagnosis.  Well, even before that since he was a cranky baby and always "mommy's boy".  He did not want anyone but me!
On this day, 4 years ago, Cody received the new stem cells from donated umbilical cords.  He actually got 2 units.  He was doing a medical study at MSKCC.  The plan was for one unit to take and it did.  Cody's blood type changed and he was soon all donor cells.  It is an amazing process and cures so many of this dreadful disease.
I know that we all know and remember how hard Cody fought and how very sick he was.  Well, he is doing GREAT now! I thank God each day when I go wake him up for his pills before I leave for work.  It is my pleasure.  He is finished with 2 years of college already too now.  I am so very proud of him and I pray for his continued good health.
Love,
Mary
PS.  Casey is back in GA now and we are meeting in FL in just 18 days.  I will be together with my family and my boys.  I cannot wait!!!!
Safe, healthy and a happy summer to all of us!!
This is Cody being goofy at dinner tonight!!

April 27, 2013

Happy 20th Birthday to Cody!! I remember this day well.  Cody was a planned c-section.  I went into the hospital early and the delivery was delayed because of some potassium levels were off.  I think he was born around 11:25am.  Casey came up that night to see you and he was all smiles.  Nana was here staying with Casey.  We lived in Cedarhurst in Apt. 1F.  Cody quickly grew up in that apartment for the next 5 years.  We moved out here to Melville right before Cody started kindergarten.  We have been here ever since.  All was going well until the diagnosis in Dec. 2008.  The past few years are a blur.  There are a lot of things I do not remember too.  The sequence of events gets messed up from time to time too.  We talk a lot and try to piece the events together.  I am proud of the young man that Cody has become.  I am proud of both of my sons, for that matter.
Today we celebrated Cody's 20th.  We  went to a street fair and it was a beautiful day!  We got lunch and walked around and then relaxed back at home before dinner.  Cody wanted mexican so he found a place and we enjoyed our dinner.  Seems like a quiet birthday after what we did last weekend for mine. During dinner, we skyped with Casey so Cody was happy about that.
Where does the time go??  How old I feel!!!

March 29, 2013

Happy Good Friday!
So Cody started back soccer!! He is working with a trainer at International Soccer Academy.  He lasted for 3 weeks and sprained his ankle.  He took some time off and went back this week and did a last kick and got a groin strain.  So he is taking it easy and going to physical therapy.  He is planting peppers and still enjoying his time with the Islanders.  He is doing well in school and it is hard to believe he will be finishing his 2nd year.
Healthwise, he is great!  He is back on track and eating more than ever.  He has more stamina and feels good.  The bouts of nausea have not occurred for some time now.  He is going to the long term team this week so I will report back on that.  He will also be going to his kidney specialist and hopefully decreasing his medication that he is on now.  We need to get him off his anti depressants and move on!!
We are keeping tabs on Casey, as he is overseas again.  We get to chat and Skype with him which makes me happy. We are planning on a trip at the end of June and are all connecting in FL.  It will be nice to be all together again.
Happy spring to everyone!