New beginnings .....

       The first day of school is always exciting.  It felt great to send Morgan to school to start a whole new year.  I was praying that he would have a great year. I hoped also after the surgery he would feel better about himself, and hopefully he wouldn't get picked on.  Just last week I filed the papers for his IEP.  I decided this year I would pursue help for him in school.  The last two years have been harder than elementary and I was not looking forward to a year of fighting with teachers for help.  I decided I would let him go through his days without interference from me.  I had been emailing teachers and fighting to get work home that he needed to complete since he came to Middle school in 6th grade.  Last year he fell behind alot in the last 9 weeks and had many incompletes which turned into F's because I was not notified he had missing work.  I thought by doing it at the beginning of the year the IEP would protect him and force the teachers to notify me of missing work before it was too late to complete.   The beginning of the year went well ...well at least for the first three weeks or so. 

I did hear from one of his teachers telling me he was missing assignments and I wrote back explaining the application for him to be tested for an IEP.   I ran into his language arts teacher in the office one day and she also mentioned his difficulty in getting work completed.  Other than hearing from these teachers at the beginning of school none of the others bothered to notify me.  I decided to let him do what he could hoping he would get help if they knew how much he struggled.  I knew the IEP should be done in 60 days so no worries right???.....(to be continued later....unfortunately!!)

Meeting Angels......

One thing I was told before we came to NYC was once we stepped foot into the Ronald McDonald house life would never be the same.  That is an understatement.  The gift of the surgery was one thing but meeting the kids at the house was something else.  They have a way of capturing your heart.  Some of the best times we spent while staying there were the late nights.  Many of the children that "live" there are in treatment at one of the nearby hospitals.  Many of them sleep in the afternoons and are wide awake late at night.  Morgan made a few friends while staying there...one of the first was a 5 yr old little boy Nathen.  He was diagnosed with Stage 4 Neuroblastoma and had been living in the RMH while he had his treatments.   Nathen has this way of capturing you with his smile.   I met his Mom Amanda there too.  He has moved to California for treatment...praying every day for a cure!! While the kids play, or eat a very late meal the Moms sit and talk, do nails, or just hang out in the dining hall mostly.   Morgan really enjoyed getting to know all the kids.  Many of the parents asked "What type of cancer does your son have?"  I felt really sad, knowing we were there for such a simple surgery, and they were there fighting for survival.  It made me feel guilty for feeling happiness knowing the everyday battles they faced.  I met another family that week also...a beautiful little girl Ashlynn Hauser, she stayed there with her mom Danielle Howard.  She had the most beautiful eyes and smile.  She lost her battle in December 2011 and is now an Angel flying free.  No more pain and no more suffering.  Here is a picture of the three of them one night enjoying popsicles.....

There were many more children we met and parents that each had a story of their journey...each different in some ways but like in others.  We feel so blessed to have met each and every one of them.  We will never forget the time we spent with them. 

We went on several trips throughout that week.  The first trip was to Scarsdale NY to visit the Scarsdale Fire department for their 2nd annual "A day in the Country".  The fire department set up a complete carnival for the RMH Camp kids, games where everyone wins, a rock climbing wall and a huge picnic for the kids and their families!  They also took all of us to the local swimming pool, where they had rented it just for us.  The kids could spend a day outside having fun...forgetting for just that afternoon that they were sick.  They could just be kids having fun and playing.  It was awesome!  The local Rotary Club gave each child a tote bag stuffed with goodies. 

                                        

Another day we took a Luxury tour bus to the Jershey Shore where one of the camp counselors, his family and neighbors opened up their beach houses to the entire camp for the afternoon.  We were able to go to the beach, relax in the air conditioning, play mini golf, and have a picnic catered by the local neighbor hood.  It was another great day to get out of the city.

                                         

The evening meals were mostly brought in by local businesses/corporations, with volunteers to help serve and spend time with the families.  One evening a carnival atmosphere was arranged on one of the terrace patios at the RMH.  Complete with face painting, caricature drawings of the kids, and a magic show too.

Morgan getting his face painted, with Nathen, Ashlynn and Stella watching.

Morgan decided to venture out alone one day.  With the help of the maintenance man at the RMH we took the subway and train to Hoboken to see "Carlos Bakery"  where Cake Boss is filmed.  We actually maneuvered pretty well in the city and found our way without a problem.  Well at least until we got there and realized there was a 3 hour wait in the hot sun.  I asked a really nice lady to take our picture in front of the bakery.  We really only wanted to get a few cannolis, so I asked her if she would but us a few when she went in the bakery.  We took the cannolis with us on the train and went to Times Square.  One of my favorite memories was eating cannolis in the plaza area watching people walk by.

                   

It really amazed me how well Morgan did after the surgery.  One of the main challenges was keeping him cool, but we managed.   One of the last nights we were there, late at night as usual, we were hanging out with some of the kids making balloon animals and playing.  I had an idea, I asked the kids if they would like to see Morgan dance some of his Hip Hop dances.  So we moved into the living room on the first floor and the kids all squeezed together on the one sofa.  Morgan did a few dances for them that he learned here in our after school program called "Reach" .  I heard one of the little girls say "This is fun wish we had some popcorn!"  The smiles on their faces were worth it all, they really seemed to enjoy watching him.  I only wished we had organized a time to show the whole camp and maybe even teach them an easy dance...maybe someday. 

Our week was coming to an end...we were called by Diane at Little Baby Face Foundation telling us we would be filming a documentary on Monday when the bandages came off.  We arrived there early in the morning and two other families were there also.  This was such an exciting day. 

He looked AMAZING!!!

We returned back to the RMH to get our things and get ready to leave. I knew saying goodbye was going to be hard.  I packed everything and cleaned our room.  We moved everything into the dining hall until it was time to leave for the train station.  Morgan went to say good bye to all the kids and before I knew it he was back crying big crocodile tears.  At first I thought maybe someone bumped his ears..but he said "No...I went down to the kids room to say good bye to everyone and the counselor said Hey everybody Morgan is going home today !! Everyone turned and said Good Bye Morgan"  I said I know we have to leave...he said " You don't understand I can't leave my kids!.. I told him they have to stay there to have treatment and get better.  We have to go back home .  Wow I just imagined seeing all those beautiful kids we had been so lucky to meet....smiling at him and happy that he was going home.  This was so bittersweet...we have had an experience we will never forget.  The surgery was a gift but meeting everyone and the experiences we have had at the RMH was more than I ever could have imagined.  In a few hours we would be boarding the train for home, going back to our lives.  But our lives would never be the same... (just a quick note to all who read my blog...to understand this entry please read the three previous ones oldest to newest,..,.it will complete the story ... :)

Surgery day...

We are up and out the door rather early.  We arrived at the Lenox Hill Hospital, got checked in and waited until they called us back.  When they called Morgan's name I remember thinking "This is It!"  We were taken to an area to get dressed, I was given full surgery garb from head to toe.  They took me into the prep area to wait with Morgan until they did the pre-op necessities.  Morgan really surprised me, didn't seem nervous at all.  The only think he was worried about was the IV.  The anesthesiologist came in and talked with us and assured Morgan he would put him to sleep first with a mask and then insert the IV. The nurse came to get us to take us to the operating suite.  Doc Romo was already there waiting for us.  The nurse told Morgan to get up on the bed/table and he looked alittle nervous and Doc R slid his stool over to him and said "Hold up a minute...Ok Morgan this is what we are going to do...we are going to get you on the table and put a few leads on your chest and get you comfortable. You will fall asleep and before you know it the surgery will be over!"  "OK?"  "Can you sit up here for me?" Morgan wasn't scared anymore...

The leads were put on his chest and music was playing and the anesthesiologist was asking Morgan what his favorite food was ...and then he said " Mom go ahead and give him a kiss." I kissed him on the forehead and he was out...snoring rather loudly I might add!  I hugged Dr Romo and thanked him and I was led out of the room.  It was hard leaving him, tears streaming down my face but I knew this would change his life forever, and maybe just maybe he would feel good about himself...and I hoped no one would ever pick on him again.  I was taken to the dressing area to change and back to a small waiting area.  It would take several hours until he would be done.  I took a walk to a local coffee shoppe for a bagel and coffee. 

Dr Romo walked in the room and said he is all done, resting nicely and all went well.  I stood up to hug him and thank him again.....he just said very modestly..."It's just what we do."  I can not say enough what a great man he is, kind, gentle and caring.  I do not know how to show him how much this means to me as a mom, or how to explain the difference he has made in our lives.  I truly believe he is an angel in scrubs!   He led me down the hallway to the recovery area and there he was resting.  He said the nurses will explain what would happen, and once Morgan was ready we would be moved to the final recovery area.  He was laying there so peaceful, but not for long.  As he woke up he just wanted to get up and leave...not a very good patient coming out of anesthesiology!!!  We had to fignt with him a little to get him to relax and rest until he was more awake.  He had head gear on to protect his ears...looked alot like the gear he wore in wrestling.  As I understand it Dr Romo had the headgear designed himself.  When he woke enough we were able to move to the final area before being discharged.  The nurses and staff were wonderful!

We were then moved to an area with small curtained rooms where the nurses monitored him and tried to get him to drink and eat a few crackers.  He fell asleep again and we waited awhile until he could be awake enough to keep fluids down.  We were discharged, and we took a taxi back to the RMH.  I got him to the room and propped him up on pillows.  He slept most of the afternoon.  The other family that was there to have the same surgery was two floors up.  They wanted to run a fruit arrangement to Doc Romos office so I stayed behind, going between both rooms checking on the boys.  They both slept pretty well.  When Morgan woke up we went to the dining room and I made him something to eat.  We stopped by the room of the other family to see how their son was doing.  They were both amazing...well Morgan was until his one side of the head gear slipped off...and onto the floor. It really scared him and me too...I picked it up and quickly attached the velcro to the top pieces from the other side.  So quickly I forgot to look to see how his ear looked...I remember saying..." I could have looked...I could have looked...!!!!"  He didn't really want me to mess with it and I was afraid it would come off again.  We weren't scheduled to go in for it to be checked until Friday.  So I called the office and within minutes Dr  Romo called and said we should come by the office first thing in the morning.  Again all I can say is he is amazing!!!!


I gave Morgan his pain medicine even though he really said it didn't hurt much.  He also took his antibiotic too.  We woke and had breakfast in the dining hall.  When we got here we weren't sure what to buy or how much food we would need.  There is a bakery that brings in pastries and they have coffee there too so breakfast was easy!  I also found out most evenings different corporations/businesses bring in dinners so really all we needed was lunch.  We took a cab to the office and Michelle greeted us and led us back to an exam room.  Dr Romo came in took the head gear off and changed the dressings by the drainage tubes.  I grabbed my phone a snapped a few pictures...he looked AMAZING!!!!

Dr Romo had me put the head gear back on just incase it came loose I would know what to do.  With the head gear back intact we were ready to go back to the RMH.   I had talked to Diane about possibly going home on Friday if all went well, but Dr R said we needed to stay until Monday to be sure, he would see us that morning.  So it looks like we will be in NYC for the whole week.  When we got back to the RMH we checked the schedule for the Camp and found there were events for us to take part in all week.  Morgan really felt pretty good so we were planning to see what we could of the city too.  It was going to be an exciting week !!

Morgan's Journey begins...

I thought this day would never come!  On our way to NYC!!! We left for the train station at about 5:30 am on July 26th.  We said goodbye to my parents and board the Amtrak train for the beginning of an amazing week. A few weeks before as we were making plans, my Mom mentioned she was worried about me taking Morgan into the city by myself.  She asked her brother to come over and go over city maps for me.  Uncle Craig was wonderful, he showed me where we come into the city at Penn Station and where we would be going to get uptown to the Ronald McDonald House.  NYC is a grid I can go anywhere if I remember that!  This was going to be some trip!!

We boarded the train...Morgan and I spent the next three hours talking and watching the scenery as it passed by the window.  When we weren't talking I was thinking of what would happen when we got there.  I found myself worrying about things and wanted to make sure I could have everything we needed at the Ronald McDonald House after his surgery.  I was unsure of how many things would work...how would I get food for him after the surgery, with no one there to help with him? I wondered how he would feel after, how much pain he would have, and what would we do with a whole week in NYC? Little did I know that I did not have to worry about anything... it would all work out fine.  Before I knew it were were there!! The train pulled into Penn Station. I can not believe we are here!!!

We were able to get our bags off the train and head into the station.  I had thought we would take the shuttle across town and then subway uptown.  That was the original plan but we decided to go up and catch a cab to the RMH.  We pulled up infront of the house and unloaded.  We went to the check-in area and spoke to Lucy, she was wonderful!  She said our room would be ready in a few hours that we could leave our luggage there and after we went to Dr. Romo's office we could move in to the room that would be come our home away from home.

We left the RMH and walked across town to the Dr. Romo's office.  I remember feeling so excited this was really happening!  When we walked into the office we were greated by Michele and told to have a seat in the waiting area.  There was another family in the waiting area, and we found out later that their son was having the same surgery also.  Dr Romo walked in and went around the room greeting all of us, hugging the boys, like we were old friends.  He explained where the other family was supposed to go to meet with the surgeon that would be operating on their son.  He sat down beside Morgan and talked to him as if he knew him. Diane came in and introduced her self also.  I could not believe how friendly everyone was.  We were given our instructions for the next day, where to go and when.  They also gave us spending money for transportation and grocery store gift cards.  This was way more than I expected.  They took Morgan back to take before pictures and I thought this time next week we will be seeing a whole new Morgan.  I took pictures of Morgan with Dr Romo and Diane. I wanted to make sure to have pictures of everything so Morgan would never forget the wonderful gift he was about to receive.  We left the office and we were on our own for the rest of the day. 

We went back to the RMH and got the whole tour.  It was a huge place with rooms for 84 families.  Most of the families were there while their children were in treatment at the hospitals that were close by.  Many had cancer, and I remember thinking how wrong it is that we need a place that large for families to stay while their children are having treatment...this was such a sobering thought.  I felt alitttle out of place...my son was healthy...but at that time I had no idea the impact meeting all of these wonderful familes would have on us.

Our room was really nice, it resembled a hotel room, with a private bath,  twin beds, a sofa, dressers, and television.  We went to the dining area and checked out the kitchen area.  We were each assigned a locked cabinet to keep our groceries, a bin in the refrigerator and freezer marked with our room number.  We found a grocery store that accepted the gift cards we were given was just up the street.  I tried to buy things that might be easy for Morgan to eat after surgery, not knowing how he would feel.  As we were putting our groceries away we met one of the beautiful little girls that lived at the RMH. This beautiful little girl came ino the kitchen and tugged on Morgan's shirt and smiled this huge smile.  She said "Thank you!" Morgan said he had a pin he received at the front desk of "Grimace"  the purple character from McDonalds.  She pointed to it and asked where he got it so he took if off his shirt and gave it to her.  Her name was Stella, her little brother Gage has Fanconi Anemia.  He was in treatment at Sloan Kettering Memorial so Stella and either her Mom or Dad would be at the house depending on who was staying with Gage in the hospital.  We were told later by Stella's dad Matt that she most likely has the gene for Fanconi Anemia.  This was the first of many families we would be touched by that week....surgery tomorrow....

Miracles do happen....

Miracles do happen when you least expect it....It all started  on May 31st.  Just a normal night checking emails, after I opened Yahoo and noticed a video about a little girl that had surgery to correct her ears due to bullying.  The link took me to an amazing site "The Little Baby Face Foundation".   I noticed there was an "apply here" area and thought what the heck.  I had mentioned to Morgan that one day I might be able to get his ears fixed if I could find a way.  He had been bullied and called names in school for years.  Last year in 7th grade it got so bad the principal let him leave 5 minutes before the other kids so he could get a head start towards home.  I ended up picking him up as often as I could so he didn't have to walk home alone.  We live almost a mile from school and that can be a long quiet walk....alone. After coming across the LBFF site I applied just to see what would happen.  The following weekend I received an email asking for more pictures of Morgan.  I remember thinking oh crap I haven't even told him...when I did he started to cry and said "Mommy I really want my ears fixed I am so sick of kids picking on me."  So we took more pictures and I asked him if he wanted to put in his own words why he wanted to have them fixed, and here is what he wrote...

dear doctor,

my mom just told me that she just sent you a letter and i want to tell you why i want my ears fixed. the reasons i want my ears fixed is because im sick of being made fun of. people at school always have a name for me that is very rude, and those words make me very depressed and make me not want to go to school. one thing i hate doing because of my ears is swimming because people see my ears and call me dumbo ears or big eared freak. those are some of the ways that i get picked on. i really want this surgery because some of my sadness will go away and i will be able to have beautiful ears. well thank you for reading this email.

morgan

I sent the letter and pics.  About two weeks later Morgan asked if I heard anything yet from the "ear people".  I told him not yet but if it was meant to be we would hear something soon.  On Monday night I missed a call on my cell and when I dialed my voicemail I was so astonished to hear " Hi this is Diane from Little Baby Face Foundation.  I would like to talk to you as soon as possible could you please call tomorrow."  I couldn't believe it...I dialed the number and it was the office of Dr Thomas Romo in Manhatten NYC!!  This is real!!! I called my daughter right away and told her, she said "Mom they aren't messin around Morgans gonna get ear surgery!! They don't call to say no!!"  I couldn't believe it and I know I didn't sleep much that night .  I called on my way to work and got the voicemail, I left a message for a return call at my office.  I told my coworker to answer my phone if I wasn't there, I didn't want to miss Diane's call.  The phone rang just before lunch...I saw the area code and knew this was it!!!  I answered and it was Diane, I said "I'm not sure if I should be excited or prepared." I was not sure what she was going to say.  She said "Oh you need to be excited Morgan has been chosen to come to New York City for surgery!!"...those words would change our lives forever.......