Day 20-24: WHEW

So, I am not going to report everything that happened in the last few days, just the highlights.  I just didn’t feel like writing since Friday, but here it is…..

Saturday and Sunday were both good days.  Will and I went to Peddlers Village and did some retail therapy.  Always a fun time for us.  Then Sunday we went ice skating at an awesome outdoor rink right on the edge of the river.  We had so much fun and he pushed himself to the point of sweat pouring down his head.  I was so proud and really saw what this program is teaching him.  Meanwhile, I was in so much pain.  Haven’t skated in many years and Will said to me…”You know mom, if you were in my program you would learn coping skills for this.”  Well how about that!  Too funny.  Here are some pics.

On Sunday afternoon I spent a lot of time working on what Will’s schedule will be when we are discharged.  I reached out to a lot of different people, set up tutoring, set up classes and activities so he has a nice full schedule. I was really happy with all the incredible support and ideas I received from all the people I touched base with.

Sunday night Will started to get a bit stressed again, but we talked a lot and he seemed to be ok.  He got up and went in on Monday begrudgingly.  I was feeling anxious all day about how his day would go and was just hoping he would have a good day.  When I picked him up he was ok but exhausted.  We headed back to the house and he wanted to go right to the kitchen to eat and relax.  We ended up playing cards, games, and crafting with several of his new friends for quite some time. It is so nice to see him just laugh, joke, and be a kid.

Tuesday he went off to his program just fine as well.  Again, I felt stressed at how his day would go. We don’t get any input from the team except for once a week and this not knowing is really wearing on me.  I picked him up and he looked sad and mad.  Uh Oh.  He wanted to go right to the kitchen again to hang and play games.  He seemed to have a lot of fun, but when we got back to our room the melt down began.  He finally started expressing that he is flat out mad.  Mad that he had cancer, mad that he isn’t normal, mad the he has to do this program.  He had a good cry and we were able to talk some more.  He was so tired he went right to sleep.

This morning he was sore and still tired, but he got up and went in just fine.  I got in a few more encouraging words and advice at breakfast and hoped for the best.  We had our mandatory group parent meeting this morning and all of us parents had a lot to say about feeling so in the dark.  I think we all felt better after expressing our concerns, and I walked out of there hoping they were truly heard.

My friend Brenda and her girls came for a nice visit today so it was a wonderful distraction to not worry about Will all day.  We went to the Liberty Bell, Independence Hall, and Lunch.  We got over to the hospital a bit early to pick him up and the PT therapist wanted to talk to me. My heart sunk to my stomach, but she wanted to tell me how great of a day Will had.  She said he pushed himself and she saw some panic at certain points when tasks got really hard, but that he used his coping skills and talked himself through these tasks with success.  She also apologized for the lack of communication as she is not used to hands on parents who want to work as a team. (So, I guess my concerns were heard.)  I was so happy and relieved.  He came out of there with a smile and we had so much fun hanging with Brenda and the girls.  They played air hockey and played with the dog from Pet Therapy.

By the time they headed back to NY Will was shot.  He hopped a shower and snuggled right in for the night.  Here’s to another great day tomorrow!

One Grateful Mom,

Claire

Day 19 – Wiped Out

I have been working hard to keep as positive, loving, and joyful throughout this journey.  I am just not feeling it today.  Will got up fine and went to program with no stomach ache or push back.  He worked hard as he always does.  I spent my day catching up on some work and knitting a blanket because I was caught up in anticipation of the meeting the team and was trying very hard to not feel like something was wrong or we were doing something wrong.

The meeting was at 3pm so I had lots of time to ponder.  Not always a good thing.  Anyway, I headed into the meeting and when I walked in it was 7 doctors and therapists there to talk to me.  YEAH that is right, 7!!!  Holy Cow, did I feel like there was a firing squad shooting at me.  Walt was calling into the meeting, but he had to call in late because he was at the Dr himself testing positive for the flu.  Good times.  Well I did my best to keep it together as I was really feeling like I was being judged in a lot of ways.  The long story short is that they were feeling they might be pushing him too hard for his age and previous medical circumstances.  There was even a point when they mentioned that they weren’t sure he was emotionally ready to do this program and I stopped them and said, “what are you saying?” At that moment I truly thought they were releasing Will from the program, but it wasn’t to that point.  They were wanting more feedback from us about what we are looking to get out of this and what we want Will to accomplish and be able to handle when he leaves this phase of the program.  We talked through it all and set some goals.

This weekend we will create his schedule for when he returns home for him to have with him throughout the rest of the program. This way he can start recognizing what is ahead of him and when he is struggling with specific tasks and says that he doesn’t understand why he has to do it the therapists can connect the concept to something he is going to have to deal with at home. It is going to be a much more rigorous schedule when he returns and the goal is that he can transfer the skills he learns here to “real life”.

This is really just a snippet of what was discussed, but I just wanted to share a bit as I promised myself to journal this honestly.  This meeting completely wiped me out emotionally.  I am still not happy that it came to this point that needed a huge meeting instead communication throughout the last two weeks.  I pointed out several times that Will is 11.  He isn’t going to tell us everything or interpret everything in the way it truly is and he needs guidance.  I hope that while we came out of the meeting feeling we are now all on the same page, that we truly are on the same page.

I had to pull myself together to pick Will up and he looked exhausted when I got him.  As if he had been through the ringer.  We talked a lot.  I told him I had the meeting and we discussed many points brought up.  He told me that he is really struggling and he is simply mad right now.  I know this is part of this process, but honestly, he has every right to be mad and unhappy with his life right now.  Hopefully this is all the emotion of the last 8 years surfacing so we can deal with it and move forward.

We were looking for something to do that incorporated movement, but we decided that lying in bed and watching a movie was an ok thing for tonight.  Tomorrow we will start fresh and find a great adventure. I wasn’t in a picture taking mood, but here is a picture of the blanket I made today.

Here’s to a better tomorrow.

One Grateful Mom,

Claire

Day 18 – It’s almost Friday!

Will got up great today.  It was his first day without a stomach ache and I was sooooo happy for him.  I dropped him and headed back to the Ronald McDonald House for a conference call and to handle some work stuff I needed to deal with.  I was super busy.  In the last few days I got several Wearable Words orders and spent the afternoon fulfilling them and packaging them up to be shipped out.  I was pleasantly surprised the the House office has a scale and postage can just be purchased here so I didn’t have to go Post Office Hunting.

I was feeling accomplished and starting to settle from all my AM work.  I was going to head out and get a bunch of steps in at the Hospital Stairs when I got a call from Will’s therapist who wanted to schedule a meeting tomorrow.  My heart fell into my stomach.  She didn’t really say why except that she wants to be sure we are all on the same page.  I hung up with her and was so unsettled.  I feel I have done a great job with all this and for some reason this call really worried me.  So, instead of dwelling I called her back and told her it isn’t fair to set up a meeting without more insight.  We chatted for a long time and she feels Will doesn’t understand why he is here.

At first I was like WTF!  He lives with pain every day and knows this is going to help him.  Then she clarified.  They are trying to impress on him that this is really phase one of that journey.  That most kids don’t go home pain free, they go home with amazing work ethic and coping skills and he isn’t understanding that.  I think part of that is my fault.  I keep telling him to work hard and it will all fall into place.  And, it will.  But, he really wants it to all happen in four weeks.  He is so used to treatment being you take this medicine and that medicine for this amount of time and you are done.  This is a bit more abstract and he will have to work on this for a long time to create life long habits and coping abilities. So, we will meet tomorrow and hopefully he can come to terms with what they are trying to get across to him.  Will is very literal so he seems to be taking this news as, “this isn’t going to fix me.”  Makes me sad.

I picked him up right after this conversation and had to work hard to just listen to his day with my new insight and simply listen to him.  He didn’t really complain about his day.  He did say his PT therapist annoyed him today but didn’t seem super upset about it.  What he did say is that they keep telling him this phase is just for coping skills and he is mad about that.  I was explaining that stress triggers amplified pain so if he gains awesome coping skills that lower his stress and worries the pain subsides.  He got it a little bit, but then said… “Why am I working out like crazy, then.”  I guess it is confusing for an eleven year old to understand all the elements.  Hopefully we will gain more insight as to how we can help him understand tomorrow.

While Will was at his therapies a package came for him.  How cool is this!!

It is from Operation Panda Healing.  He got this adorable panda bear to hug and snuggle when he is feeling down.  Boy was that perfect timing!

We had a nice dinner together and then he participated in Music Therapy.  He really participated, and that didn’t used to be the case at all.  I just love seeing him be a kid laughing and having fun.

After that we played some cards with another eleven year old boy and Will was being silly and making this boy giggle.  I think they both needed each other tonight.  Everyone is equal here at the Ronald McDonald House and it is awesome.

Now he is all snuggled in his “King Bed” with all his friends to keep him feeling safe and happy.

Here’s to staying positive and almost making it through week two.

One Grateful Mom,

Claire

Day 16 & 17- Music to my Ears!

It has been a busy two days.  Will has been working extremely hard in his programs and I see it starting to pay off and work.  Yesterday he woke up nervous and with a belly ache because it was his first day back after a 3 day break.  He didn’t fight me, but he was cautious and worried how his day would go.  He went in without a problem and worked really hard.  So hard, his body ached a lot.

When I picked him up I decided I wanted to him to keep moving, so we walked about five blocks to the Barnes & Noble, shhh don’t tell Walt, and then to the frozen yogurt shop.  We enjoyed the reward of some Fro Yo.  It is always fun to have dessert before dinner. 🙂  After Dinner we spent some time crafting in the kitchen and chatting with another family who also has an 11 year old boy.  It is nice to see Will being social. All in all a good day. Here is a picture of Will ‘high fiving’ Ronald McDonald on the way back from our walk.

This morning he woke up kind of the same, but trudged on.  I am so proud that he isn’t fighting me to go, just expressing his worries and soreness.  There are three new kids who started this week so Will is actually one of the kids who is welcoming and encouraging them.  He is also the youngest and only boy!  So it is interesting to see their dynamics.

We had our mandatory parent talk time this morning and two of the other moms were expressing that their daughters were talking so highly of Will and how hard he works.  The one girl said she has to work harder because she is 4 years older than him and that’s just not ok.  I love that he is motivating them.  When I picked him up his PT therapist said  that he had an excellent day.  And he said…”I AM SO HAPPY.”  And tonight he said…”I CAN’T WAIT UNTIL TOMORROW.”   Whaaaatttt!!! Boy was this music to my ears.  I couldn’t be happier to hear him realize that this all for good.

Tonight was another Pet Therapy night and Will always loves that.

There were several kids hanging out and playing.  One dad had some latin music playing and his little cancer ridden daughter was leading a dance party.  Adults, kids, and even the dog enjoyed this hour of forgetting life’s crap and simply enjoying one another. There was so much laughter and happiness.  It was just beautiful.  More tomorrow.

One Grateful Mom,
Claire

 

Day 13, 14, 15 – Our First Weekend

Well, we made it through our first weekend at the Ronald McDonald House.  I was a bit anxious about it because my job was to keep Will moving so he stays on track for his program.  However, we had great success with keeping him going.  The RMH had complimentary tickets to the Camden Adventure Aquarium.  We had such a great time there.  It was just Will and I.  We chose to just walk around with no agenda and were able to see the entire aquarium.  If you are ever in the area take the time to come to this one.  It was just right.  Will’s favorite animals were the Hippos.  Here are a few shots from our visit.

On Saturday night Walt and Cele came into town for a quick two day visit.  We were so happy to see them.  We got up Sunday and headed to the Franklin Institute, compliments of the RMH.  It is so incredible that there are so many offers like this through foundations that support families staying here.  The Franklin Institute was absolutely amazing. We spent as much time there as possible.  They were closing the gates to get us out.  There were so many exhibits, but the most incredible one was the Terra-cotta Warriors.  Just amazing.  It was great to have something that interested each one of us.  It made for a great day.

On Sunday morning, we slept in a bit since it has been so many early days.  Although, Walt and I were able to sneak and hour together for breakfast and some catching up.  I was so grateful for that hour because I don’t think we will see each other until Will and I come home because the schedules are starting to get busier as the New Year unfolds.

Will and I took a quiet day. We walked the stairs here in the house several times to get a bit of exercise in, did some homeschooling lessons, played cards, crafted, and watched some TV.  After dinner it was time for Pet Therapy.  Boy did this make Will happy.  And, it couldn’t have been more perfect for timing because he was starting to get nervous about starting up again tomorrow.  This dog, DUKE, was oh so sweet and lovable.  Just a mush.  I guess animals come to the house every Monday and Wednesday.  We are excited to see who comes next.

Now we are snuggled in for the night and I hope he gets excellent sleep to start his week off right.  Thanks for all the love, support, and outreach.

One Grateful Mom,

Claire

 

Day 12- 1st Week @ CHOP Done!

Today was a horribly rainy day.  It was finally warm, too warm for this time of year, but it just poured all day.  Will got up sore and with his tummy hurting again, but he willingly went in.  One of the kids was graduating out of the program and he wanted to bring a gift to her.  He was very sad she left because they bonded in the short time he was there.

I went right back to the hotel to do some computer work and start packing up because I didn’t know where we were going to stay.  Around noon I got the call that there was a room at the Ronald McDonald.  What a relief!  I was really starting to stress that one.  So I started bringing everything down to the car which was an enormous project on my own, but I got my steps in. 🙂  I wanted to get everything over to the RM House and get somewhat settled before I had to pick up Will so I could surprise him.  I got about half the stuff up to the room and had to just stop.  WE HAVE A TON OF STUFF WITH US!!

I was starting to feel anxious.  I don’t have any reason why except maybe I finally allowed myself to feel it when there really was no need anymore.  I decided to head over to the hospital and grab a cup of coffee and read for an hour before I had to pick up Will. That helped.

When Will got released he was not in a great mood.  His PT therapist chatted with me a bit that he is very frustrated and he is such a hard worker that he forgets to breathe when trying to complete a task.  He has a series of timed tasks.  Timed things have always stressed him out so I understand why.  Anyway, the assured me that he is working super hard, but he is very frustrated.  He is also very sore.  He is using muscles that he probably didn’t even know existed.

Getting into the Ronald McDonald House was a great distraction for him.  He did three trips back and forth to the car with me, even though his legs are on fire.  We had a great dinner made by some amazing ladies who come in every two weeks and cook for the whole house….45 rooms!  We did the laundry, learned some knitting, planned out our weekend, and finally headed off to bed.

All in all, it was a good day.  I am completely surrounding Will with love and he is doing great things!  Feeling super thankful for this amazing opportunity.

Today we head off to the Camden Aquarium for some fun.  I think it will be an excellent activity to keep Will moving since that is my job.

More tonight…

One Grateful Mom,

Claire

Day 11 – 4th Day at CHOP

Another good day in the books.  Will had a half day today because all the Doctors had a retreat.  His stomach hurt again today when he woke up.  Nerves are just so damn powerful.  He got up and we headed over for breakfast.  He took three bites of his yogurt and said he couldn’t eat anymore.  So we just chatted and looked at pictures of all the babies in his life right now.  A very happy distraction for him.  (Bella, Everett, and Jack)

Will then went off to start his day with Yoga and I headed back to the hotel to meet up with Brenda.  We had a nice breakfast together and did a little exploring of the city.  The weather was significantly warmer than the first half of the week so that was great.  It was nice to just hang out a bit and not think of the 1000 things I think I should be doing.  The time was nice, but short as we had to pick up Will at noon.  He came out of his morning very well again.  Super sweaty and red, but in good spirits.  I am just thrilled with his reaction to this program so far!

We were looking for a place to eat lunch and took a nice long walk trying to find a good place just to end up back at the restaurant right across from the Hotel.  Oh well, the walk was good!

Getting lot’s of steps in!

Brenda had to start heading home after lunch and I had to come up with something to do with Will to keep him moving.  The more he moves the better.  So, we had Brenda drop us off at a little mall about 20 blocks from the Hotel.  We walked around there for a little while, but it didn’t really have any stores that interested Will.  We strolled down the street back towards the hotel and ended up walking the entire way back.  Will is such a trooper!  Here is a picture from a bridge we walked over the Schuykill river.

We have driven over this bridge a million times, but Will was so excited to walk over it.

His legs and feet really started to hurt him so we stopped for a cup of tea and then headed “home.”  Well, we can at least call it home for tonight.  We still don’t have a room at the Ronald McDonald House so that makes me pretty nervous.  Tomorrow is when our time runs out with being covered by the foundation that is helping us so the bill is on us until the Ronald McDonald House has a room.  I am crossing all my fingers in hopes of a room opening up for us tomorrow.

Will was so tired that he was showered and asleep by 8pm.  I hope he sleeps until the am and wakes up feeling good.  Tomorrow is Friday and my intention is that it will be great!

One Grateful Mom,

Claire

Day 10- 3rd day at CHOP

He did it again!  I am so proud of him.  He worked really hard all day.  Today he had swimming therapy and individual music therapy for the first time and seemed to do well with it.  It was a rough start to our day.  He woke up with a stomach ache and every muscle in his body feeling sore and tight.  He really didn’t want to go and do another day of this.  My job as the Mom is to validate those feelings and then send him to get ready without any hesitation.  So I handed him a short meditation video I found for anxiousness and said do what they say and go brush your teeth.  I thought he might throw the iPad at me, but he watched it…took deep breaths…and got moving.  I keep talking to him about he has to keep putting one foot in front of the other and believe this is going to work, and it will.  As my Nana used to say… “Inch by Inch Life’s a Cinch, Yard by Yard Life is Hard.”  I think he sort of believes me, at least for now.

My friend Brenda came into town this afternoon and I am so grateful for the company.  There is a lot of alone time during this process for me and visitors make is so much nicer.  We got to catch up a bit and headed out to get Will.  I was so nervous as to how he would be since we are now three days in and reality has set in.  HE WAS GREAT!  I think having Brenda come was a great distraction and he just chatted away with us telling us everything he did in chronological order.  What a relief.  Brenda kindly took us out to a yummy dinner and we went back to the hotel to chat some more.

Will was feeling silly tonight so he opened up one of his cards from Sophie.  Inside was a fun note, some silly Mad Libs, and this adorable picture which made him literally laugh out loud.  So wonderful to see him laugh. Feeling happy that he had another good day.  I am sure he will hit a wall here or there, but let’s hope this continues this way.  More tomorrow…

One Grateful Mom,

Claire

 

Day 9 – 2nd Day at CHOP

I would call today a good day.  Will was a bit nervous going this morning because he had more of an idea of how hard it is going to be, but he willingly got up and dressed to head out.  Since we have no kitchen we decided to eat breakfast at the hospital cafeteria.  Believe it or not, it is really great there.  They have an awesome build your own yogurt parfait bar that we love, so it is a good fit for us.  So, we ate breakfast at 7am and headed right over to his program for 7:45.  Totally different schedule than home, but he did great.  I said hello to the Dr and nurses and they said… “OK mom, you can leave.”  So that was that.

My intention was to go right to the hotel gym, but one of the “seasoned” moms invited me for coffee and that was really nice because I got some insight of what to be prepared for the next few weeks.  Lots of ups and downs.  After that I settled in to a bit of a work with a few conference calls, emails, and journaling.  I also fit an hour on the treadmill.  Really feeling good about how much I am changing my movement here.  30 days is a great amount of time to create new habits.  I went and had a salad at a restaurant by the hotel for lunch and then headed back to the hospital where I sat and read for an hour while waiting for Will to finish.

I was pretty worried about how he was going to come out based on his mood yesterday, but he came out great.  He was positive, bright red still, but positive.  He told me play by play about his day and said he cried twice today. Then he said, you know mom…”all the kids cry sometimes.  I guess that’s just what you do here.”  That was a pretty quick realization.  When we got back to the hotel we headed back to the gym where Will did his daily stretches and I did 30 minutes on the bicycle.  I hope we can keep this tradition. We needed to do some housekeeping stuff so we found a CVS for some supplies, found the laundry room and did the laundry.  Have to take care of business.

Still no Ronald McDonald openings.  This is a bit frustrating because we don’t even have a fridge or microwave in the hotel.  Makes for expensive food since I can’t really prep anything.  Hoping for a call tomorrow that we have a room there.  Don’t get me wrong, I am so grateful to have the room here, but RMH would be best for our needs.

Tomorrow I go to the first Parent Support Group for AMPS patients.  I am excited to hear other peoples stories, share ours, and find out as much info as possible to best help Will.  Also, my dear friend Brenda is coming for an overnight visit.  It will be nice to have another adult to chat with.  I have way more alone time here than I ever get.  Here’s to another good day tomorrow.

One Grateful Mom,

Claire

Day 8- 1st Day at CHOP

Well, he did it!  I am so very proud of my Will.  He was so very strong and brave today.  He was very anxious going in, but he still put one foot in front of the other and did it.  We had his first appointment at 7am with Dr Sherry.  He is the Dr who spearheaded this program and he was amazing!  He did an incredible job joking with Will, making him a bit more comfortable, and pushing him without Will even knowing it.  At this appointment Walt and I looked at each other and just knew that this is right where Will needs to be.

Seashore House where Will’s treatment is.

Next we moved over to his “homeroom” where we met with the Nurse and got a tour of the facility.  One of the rules Will has was that he is not allowed to use elevators while in treatment so we all got a lot of steps in!  After the tour it was time for Walt and I to go on our way and let Will take control.  He had his OT Eval, one hour of OT and then his PT eval next.

We were allowed to come and take him to lunch today and he definitely wanted us to.  He seemed pretty good at lunch, but still a bit anxious.  After lunch we all went to his “talk time.”  This is with his psychologist and it was great.  Will was cautious at first but really opened up and I really believe as he settles more into this program he will get huge benefit from it.

It was time for Walt and I to move on again and let Will do his thing.  It was starting to rain and was almost at the freezing point so we decided that Walt should head home early just to be safe.  He has the job of handling everything on the home front while I get to handle Will.  (I think I got the better end of the deal, thanks babe!)  We had a bit of an adventure… when Walt tried to start his car it wouldn’t.  The battery had died.  We had to push his car out of the parking spot and jump it with mine.  Luckily it worked right away.  WHEW.  Walt left and I headed back to the hospital to pick up Will.

During Walt and my adventure Will had another hour of OT and PT! When he came in for me to take him home he was bright red.  I mean candy apple red.  Poor babe.  I asked him if he wanted to go do anything or eat and he just wanted to go “home”.

Home away from home.

On the way home he was pretty quiet. Finally he said he was so mad.  I asked him why and he said he cried.  He said it was so hard that he just cried.  I told him I was so proud of him for not holding it in and that eventually it won’t be hard.  He turned around pretty fast.  He said that he had to do his stretches so we decided we would go to the hotel gym and I would treadmill it while he stretched.  He did such a great job!  We ordered food in and are currently watching some good old HGTV to decompress.  He said he is worried about tomorrow, but I just know he will do great.  I am just so very proud of him!!!!

Thanks to everyone who has been reaching out to us with love and support.  We feel it.

One Grateful Mom,

Claire

*OMG- Will was feeling sore and decided to open one of his friend Sophie’s cards and truly laughed out loud!  Check it out….