One Month - Many Adventures

In the month since my last post I have had so many adventures on the east coast, the west coast and with friends. Below are just a few pics to share the happy times.

Car Wash to raise money for the Community

First O's game since I went with Chris - thank goodness for good friends to share the day with!

Another golf tournament - what great teammates - this was their version of helping me read the green!

Both of our golf tournament foursomes - did I mention there were margaritas on the course!

San Diego sunset in La Jolla

San Diego TOYA event

Camping in beautiful Frederick, MD

Going with other Jaycees to Gaithersburg to help kids in the community paint pumpkins gearing up for the Fall!

After this past month...even the cats are exhausted!

But despite all of the trips and all of the adventures - sometimes you need a little sign from above.....I got off the airport shuttle at BWI in the Long Term lot, turned around and saw this in the sky welcoming me home again!

First Birthday...Memory

My first birthday without Chris has come and gone (28 again – I swear!). Ironically it wasn’t my actual birthday that bothered me so much it was two days later as I spent my Labor Day cleaning the house, filing paperwork, trying to get things organized that haven’t been organized pretty much since May as we kept just moving things around in different locations through each “life moment” that happened. Rob was working the fair which left me home to my own devices, and my own thoughts…….

Every year Chris invariably forgot my birthday and it would be a day or two afterwards that I would call him up and say – “nice job a**hole – you forgot my birthday again – so what are you going to buy me!!” And just about every year – at least from when I was 14 through about 24 – he promised to take me shopping. Which then became one of our many jokes - he even started doing it for Christmas at times….or at least telling me that when I would ask him what he was going to buy me for Christmas since I was his most favorite sister in the whole world!

My 18th birthday he did actually buy me something and he bought it about a week and a half early. Of course, that is only because I was at the mall (this was when he still worked at Ruby Tuesday’s in Montgomery Mall, PA) and I asked him how much money he was planning on spending on me for my birthday. I told him that I found a terry cloth bathrobe that I wanted and since I was leaving for college that weekend and needed one there – he should just give me the money to go buy it. He did that – I went off and bought it then gave him the bag to wrap it up for me - heh. This of course resulted in him throwing some napkins from the restaurant in the bag as tissue paper and giving it right back to me since I was the one who always wrapped his gifts for him!

And of course, my 21st birthday he had a gift as well. For my 21st birthday, my dad, both brothers and my godparents all chipped in for a limo to go to Atlantic City – timed so that I would walk onto the casino floor at the stroke of midnight as I turned 21. When each of us turned 21 dad took us to go gamble for the first time – since I was the youngest, when I turned 21 we went all out! I remember that Darren bought me a bottle of Dom Perignon for the occasion and Chris, in usual Chris fashion, bought me just about everything else he could find. There was a case of beer, there was Aftershock, there was the liquor that is chocolate on one side and cream on the other and you pour it out together, and there was champagne. Of course Chris had to ask me later whose champagne I liked better. I had to admit I preferred his $15 bottle over the $200 bottle – what can I say – I’m a cheap date (Rob and I even had $5 bottle Verdi as our official champagne toast at our wedding!) Of course, Chris being Chris used that to let me know that it was just really because he was the better brother!

There are my moments now when I still can’t believe that it is true – when I feel like this has all just been a horrible dream and Chris and I are just in another phase of our lives where we aren’t talking as much as usual. Chris and I used to talk about that on Tuesdays – how he kept hoping that it was all just a dream, that any morning he would wake up and realize that this whole “cancer-thing” had just been another nightmare he had and everything would be fine. I used to tell him that he didn’t need to wake up – that everything really would be fine someday – we just had to go through this crap to get there. He would tell me that his one nurse would ask him how he was coping with having “incurable cancer” and I would get so angry that she dared say that – there was no such thing as incurable, simply just not finding the right “chemo-cocktail” yet – ironic considering I was the one telling people to not live with regrets because I was trying to get others more involved. Now I just have to tell myself over and over that this isn’t really my own bad dream that I can wake up from, that it really has happened and as much as I secretly hope that this whole summer has just been another of my nightmares, that I know it’s really not.

Another August Birthday Celebration

Last night was another August Birthday celebration – we celebrated my nephew turning two! Unfortunately Unkie Rob (as Jared calls him) couldn't make the trip to PA to celebrate based on some side work – but the gifts were still very well received…..or as Jared said…”presents..mine, mine, mine!”

Below are some photos from the night. Grandpop Hodo gave a Thomas the train engine and some clothes, Pop-Pop and Mom-Mom gave clothes, and Unkie Rob and I gave a “mocha-nanny” Jared’s term for motorcycle and some clothes. True to a two year old – the clothes were pretty much thrown aside and the toys played with immediately!

Anxiously awaiting the birthday cake!

Yeah - birthday cake!

Unwrapping his "mocha-nanny"!

Everyone needs a super-hero!

And even more Jack Daniels!

Another weekend, another birthday party and another supply of Jack Daniels to take home with us (though slightly depleted by the end of the day as we “fed the masses” during the party!!)

All that Jack!

I would definitely have to say that good times were had by all. Rob had the chance to hang out with friends we see often, and many that we haven’t had the chance to catch up with in quite some time. I asked him if his 40th birthday was everything he expected it to be and he told me that it was even better!! Of course we laughed about the fact that he really got a total of almost four birthday parties – between the two that I threw, the impromptu party at the bar the night of his actual birthday, and everyone celebrating with him all during the Jaycee Convention!

Yes - that is the birthday cake!

Rob and Kristen - "no relation"!

A Ray sandwich!

Rob with his godson - he's finding all of the grey!!!

Alec wanted to take pictures - Jen style!

So with his birthday celebration extravaganza over – it is time to start gearing up for some more fun and activity – tonight we are celebrating my nephew’s second birthday and this Saturday will be my own birthday celebration (turning 28 again!) though I am still not sure of the big plans other than to know that at some point I will be at the State Fair as is my birthday week tradition (cheesy and hokey and I LOVE IT!!!). And the activity is to get the house under control again – this year I didn’t quite get around to taking care of my lawn the way I like to, so the backyard is now no longer grass – more just weeds some crab grass and lots of clover!

On Sunday we actually decided to relax for a little bit after finishing cleaning from the party. Our original plans were to head to Waldorf to take care of some things – but I think after we went out to get our tents and help with final cleaning from the party we were both about ready to just collapse! I went to the cemetery for a while to take over my Sunday flowers to Chris and just to talk for a bit. It is very peaceful over there and is one of the few places where I can actually feel a little bit whole again. Of course Rob teased me about taking so many flowers over to Chris saying he is going to start wondering about him……that was how Chris and Rob always were though – teasing each other about who had the “more manly” scars (both had their operations within weeks of each other), who had the higher threshold for pain, and then in the same breathe Chris would tease Rob about “you know you want to spoon with me later.” Really, if you know a Hodo – then you know our warped senses of humor! But, it’s kind of nice to have Rob still tease like that though because it makes it kind of normal – kind of like one thing that didn’t have to change. You know – like we’re not pretending that Chris was different than what he was when he was still here.

Poetic Truths

About a month ago I received a brochure from the funeral home entitled “My Friend, I Care.” At that time I just put it aside because I didn’t want to read it at all. I just read it this morning before coming to the office. For anyone who has ever lost someone – I would strongly encourage you to read it and feel free to borrow mine.

The real reason I write about it though – there is a poem at the end that I want to share because I have never yet read anything so perfectly stated and truthful’. See, over the last nearly two months I have heard so many different expressions and sentiments – some wonderful, some that have made me go “huh?” – but ultimately I know everyone searches for the right thing to say – as you can see from this poem – stop searching, there are no right words, just great friendship – and I love all of those great friendships!


Don’t tell me that you understand
Don’t tell me that you know.
Don’t tell me that I will survive,
How I will surely grow.

Don’t tell me this is just a test,
That I am truly blessed,
That I am chosen for this task,
Apart from all the rest.

Don’t come at me with answers
That can only come from me,
Don’t tell me how my grief will pass
That I will soon be free.

Don’t stand in pious judgment
Of the bonds I must untie,
Don’t tell me how to suffer,
And don’t tell me how to cry.

My life is filled with selfishness,
My pain is all I see,
But I need you; I need your love,
Unconditionally.

Accept me in my ups and downs,
I need someone to share,
Just hold my hand and let me cry,
And say, “My friend, I care.”

Joanette Hendel
Bereavement Magazine

The Surprise is Over!!

This weekend was another whirlwind. Saturday was the Surprise 40th Family Birthday Party for my husband and his twin. Though it was not too much of a surprise, especially thanks to a last minute phone call on behalf of another about side jobs……it still went very well.

The perfect birthday cake!

The surprise for Rob was that my godparent’s entire immediate family was there – which he just appreciated so much. Beyond that, I had pulled together some picture boards – one for each of the twins, with pictures from when they were young, but mostly from over the past 6-7 years. Both of them loved the boards – which I was just thrilled about! And the boards will make another appearance this coming Saturday at the Friends Birthday Party (yes – there are two parties for such a momentous occasion!)

Rob with his new glasses

And, I will never be able to thank Nancy, Carol & Rick, and Aunt Janet so much for all of their help. This was the party that while I coordinated some efforts – these guys really came through and made it happen, while I have been planning the friends’ party.

This past week was definitely one of the more difficult weeks too since Chris is no longer in our lives. See, the day I took Chris to the hospital after Disney – we were sitting in the “pod” (treatment area) waiting for a bed to open up. We were there for hours on end and when he was awake – we would talk about all sorts of stuff. He had promised me that he would make it for this family party for Rob. Over this past week as plans were coming together there was many times where I just got upset because he wouldn’t be there. I guess really some of the finality of it all is setting in – the reality that I will never get to talk with him again, never get to make faces with each other and make fun of people, never even get to pick a fight or get frustrated with him because he was so stubborn all of the time. And mostly, I don’t get to talk with him anymore about things that are going on in my life, things going on in his – relationships, what our goals were for the future for ourselves and all of the things he and I talked about. It just sucks.

But, one of the amazing things – because my brother was the guy he was – he still got to get the last word in with Rob – he bought him a birthday gift while we were in Disney. I pulled it out and gave it to Rob on Sunday afternoon – it choked both of us up a bit. Chris had bought Rob a set of Disney World golf balls and a miniature golf bag tee holder that he can put on his golf bag.

So, with the family party - and the last thing that Chris promised me he would make - over, I would love to say that I have found my new normal in life – but it is still a work in progress – a day by day journey, and some days, it still is hour by hour. Rob mentioned yesterday that time is just flying by and before we know it, it will be Christmas – I asked him not to rush it – Christmas without Chris is not something that I am looking forward too. In the meantime, day by day will work and the celebrations along the way will still mean something just with a bittersweet moment – you know that moment where I can’t believe he isn’t here to laugh with me, cry with me, make faces with me and just stand by my side like we have done so many other times in our lives.

Answered Prayers

For those who read this blog and said their prayers – thank you. Jessi just called me to let me know that Mom passed away this morning, but not after having some moments of clarity in which to offer her love to her children and family.

Mom Honey – you will be missed.

Say a Little Prayer for Mom

I know everyone has different feelings about religion, prayer, etc. – but if you are reading this and believe, then please say a little prayer for Jessi’s mom. Jessi is my “sister by heart” and her mom is my “adopted” mom. Eight years ago she was diagnosed with a degenerative lung disease and told she had 6 months to 10 years – simply because she is so tiny and has so many different reactions to medicines. Last week, she went into the hospital and was told by the doctor that she is in the final stages of the disease. This woman has pulled more miracles then we can count and I pray that she is able to pull one more, but am just not sure this time. She now needs the Bypab machine with the full mask nearly 24 hours to keep her oxygen levels up and her carbon dioxide levels down and is not in her own senses much of the time which we are hoping is just based on the various medicines that she is on – but again have received different reasons for that as well. I went up there on Friday night to hug Jessi and to see her mom – Mom told me that she was talking with Chris and let me know that he is playing on a league!?!?

It is so hard to listen to Jessi on the phone because I hear the pain and the fear in her voice and just wish I could take that away from her. As we said the other day to each other – mine is not a club she wants to join – the one where you lose family members – I told her that I didn’t want her in my club either.

So please, everyone, say just a little prayer, that Mom pull just one more miracle, but that even if she cannot make it through this time that she gains her mind back enough for Jessi to talk with her just a little bit more.

The New "Normal"

It has been several weeks since adding an entry to this blog – mostly because my world has been put in a blender a few times and I am still not quite sure what to make of the result.

If you are reading this blog it means that you are either a good friend, someone with whom I want to share life’s journey with – or you simply stumbled upon it which means that you are merely a friend in the works! But this blog was never about being just Chris, it is about the stories that make up my life of which Chris was a major factor in, and so like everything else – this too will continue.

Over the last few weeks I have done everything possible to keep from thinking, though it is the one thing that I can’t get away from. Since my brother’s death I have planned his services, organized much of his belongings, been on the annual beach week trip, and yes, even went back to work. Through it all I just kept wondering how I was going to keep going without my brother there. As much as we could get on each other’s nerves (which we were very good!), he was always one of my closest friends. The person who I laughed with, cried with, shared dreams with, and turned too when I needed someone. My friend PC said it best – “it will never be normal again as you once knew it – you simply have to find your new “normal.” “

I have to be honest, I’m not enjoying looking for my new normal – I miss Chris so very much, and now that the services are done and life is “returning to normal” i.e. going to work each day, etc. I miss him more and more – and that empty space in my chest feels like such a big cavern right now. While we were at the beach I caught myself calling his cell phone a few times just to share some funny story with him. And though Rob has told me time and time again – you can still talk TO him, I very selfishly, want more – I want to talk WITH him.

What many of you may already know too is that while looking through Chris’s computer for pictures for the services, I came across a letter that he wrote to my family about one week prior to going on short-term disability in May. It was a letter that he wrote with the hopes that it would never be read – it was his last special message to each of us, my father, my brother, and me. In it he told me to please slow down – he said that I “make him dizzy.” I have just started to really think about this and know that in the coming weeks I will think about it more as I make my decisions for the next year, as Darren and I continue our discussions on the establishment of the cure cancer now! as a non-profit organization to help individuals like Chris – good living therefore no help for medical bills, and as I figure out what I really want with my own career.

For now though, I simply know that life will continue and I will eventually find what that new normal is supposed to be – but right now I mostly just want to lie in bed, cuddled up with Camelot (my cat – he’s back to sleeping on my head again!), and watch Sex and the City On Demand. So if I don’t return your phone call, please know that it is not that I don’t appreciate it – I do – I absolutely do, just sometimes, I am not quite up to talking – but I appreciate you calling still!

Arrangements

Arrangements for my brother, have been made. For those reading this blog, please pass them along to others who may need them.

All services are to be held at Evans Funeral Chapel on Harford Road in Parkville, Maryland

Viewings are Tuesday, July 1 from 3:00 Pm - 5:00 PM and again from 7:00 PM to 9:00 PM

The service will be held on Wednesday, July 2 at 11:00 AM, also at Evans

Graveside service will immediately follow the service at Gardens of Faith Cemetary (on Lillian Holt Drive).

Christopher's death notice will be placed on the website www.evansfuneralchapel.com

Because the obituary that we wanted to run may not actually run, I wanted to place it here for friends and family to have and forward:

Christopher Nicholas Hodorovich, 35

Chris was born on July 17, 1972 to proud parents Nicholas Dickinson Hodorovich and Judith Marie Hodorovich. Chris was born in Dayton, Ohio, moved with his family throughout the east coast, growing up predominantly in Chalfont, PA. Here he attended Unami Junior High School, and graduated from Central Bucks West in 1990. After high school, Chris began employment in the food services industry, working his way through the ranks into upper management. He began his career with Ruby Tuesdays Incorporation. Through his promotions, Chris moved to New Jersey and then on to Parkville, Maryland. Chris continued his career with Uno’s Chicago Grill after moving to Waldorf, Maryland.

Chris lost his battle to colon cancer on June 27 at 12:20 PM, but not after fighting valiantly for 18 months. Chris is preceded in death by his mother, Judith, and is survived by his loving father, Nicholas, his brother and sister-in-law, Darren and Sandy Hodorovich, two nephews, Corey and Jared, and his devoted sister and brother-in-law, Jennifer and Robert Ray, and his best friend Kip and his family.

Chris was a devoted life-long Baltimore Orioles fan, and Disney enthusiast.

Chris will be best remembered for his heart of gold and his unique sense of humor. No matter what the situation, he thought of others and did for others first. He could make people laugh with his odd sense of humor. His greatest dreams were to be able to go to Disney World with his family and help others. His dreams were fulfilled.

Chris, you are loved and will be missed more than you could ever have imagined.

In lieu of flowers, the family requests donations be sent to the American Cancer Society.

Friday, June 27, at 12:20 PM my brother passed away. He made it through the second phase of the pain pump surgery, but while he was in recovery he went into breathing problems and then his heart gave out due to complications with his cancer.

I will post service details as we make them.

Phase I is Complete

The first part of inserting the “pain pump” into my brother was completed on Tuesday morning. This involves putting the tube into his back between his vertebrae that the actual pump will be hooked up to. The second phase of the procedure to hook up the pump is still planned for tomorrow morning; however it is a tentative plan right now as my brother continues to rock between being in pain and being fairly looped up on the various concoctions of medications they are giving him. They have yet to figure out the “perfect balance.”

Right now the nursing staff is encouraging him to walk around more to both test his mobility as well as get him moving and not just sleeping all of the time; however he is still groggy much of the day. The only times he seems to not be groggy are the few moments between when the medicine is about to wear off and when the pain begins. His oncologist has previously said that with these pain medications the body actually has to adjust to them and after a while he will be able to function with them with less grogginess – here’s hoping that happens sooner than later!

As of right now, the plan is that he will be released this weekend, but as always, one day at a time because each day brings different news, last night they were thinking it wouldn’t be until later next week, and today they are back to saying this weekend!

A great big thanks to Tammy for keeping Chris’s kids (kittens) fed and loved during his extended stay away, and to Kristen for being the “ray of sunshine” last night with your visit. Makes me want to start singing “You are my sunshine” but then I would have to start routing for LSU – right Jeff?!?

Relay and No Radiation!

While this past weekend was spent with friends doing fun things – it was still another packed weekend – I am very excited for this coming weekend where we have no “out of town” visits planned – we can simply relax in our own relaxing way – i.e. spend time with friends on Saturday and the rest of the time get caught up around the house – and hopefully be able to find some little flowers to plant for my front stoop container garden (based on timing and cost – most likely only impatiens this year - next year I will get "fun with flowers" again!)

Friday night was the Cockeysville-Timonium Jaycees Relay for Life. It was fun – great to hang out with friends, and the irony of the location – to actually not talk about cancer for a few hours! I did set up my two luminaries – one in memory of mom and one in honor of Chris. We only stayed for a few hours and then headed to meet some friends for dinner and drinks before heading home to get some much needed sleep.

Saturday we were up early to pack and head to Salisbury to help their Jaycees with the Chicken Festival and then on to a night in Ocean City where Jeff was gracious enough to host us for the night! Funny, after leaving the chicken festival Rob and I both said that we didn’t want to even look at chicken for quite some time – so when we went to Harpoon Hanna’s in DE, we ordered wings – doh!!!

As for Chris, he continues to be at Hopkins as an inpatient. They are not foreseeing a release until later this week. More tests have been completed and we are beginning to get some answers though every one answer tends to raise more questions. They are starting to get his pain under control but every now and again he is having “pain attacks” – requiring higher doses. I think right now we could stop a rhinoceros with the amount of medication he is on. But, his best friend and family were able to make it down from PA this weekend to see him which helped raise his spirits some and I think helped him set a “fight resolve” a bit more!

Previously we were looking at radiation in his back specifically to reduce the pain so he could function and potentially not be in the wheelchair / scooter for mobility assistance. The concern with the radiation is that it would either delay the clinical trials and/or make him ineligible for some of them. Well, for good or bad, radiation has been ruled out as an option for the same reasons that it cannot be used for the rest of the cancer – even within his back region – the cancer has spread too much for the radiation to be of much use. On Friday / Saturday the doctor’s were considering a procedure where they would go into his back and deaden his nerves to the pain so that he simply wouldn’t feel it – again, the spread of cancer is too great to deaden that many nerves, and the preference is to not do the procedure if it will not work effectively enough. So, the current plan is to implant a “pain pump” into my brother’s back that will release the pain medication directly to the area where it is needed. He will also have a button to release higher does if necessary, which will also be placed under his skin. This will eliminate the need for the extent of the oral medication which was getting out of hand. The next steps continue to be the same – figure out which is the better option, clinical trials at Hopkins or see what CTCA has to say in Philly.

We also continue to look for apartments in the Parkville / White Marsh area that will allow my brother to keep his two cats (Palmer and Calvin – yes, he is a HUGE Orioles fan!) as well as provide ADA accessibility and be close enough that I can get there within a short period of time to help out with various items including any emergency visits to Hopkins since calling 9-1-1 would only put us at the wrong hospital and transfers between hospitals seem to be next to impossible to complete. The search continues!

Disney World - HodoRay Style!

After much advice from friends including giving it out myself as well to my own sister by heart - I think I had better keep up with this blog if for nothing else than to save my Verizon minutes - especially considering we are still on a limited budget after three months!!!

The Hodorovich - Ray family did what we never thought we would do - go on a real family vacation - not just the overnight trip to Atlantic City where we all slept in the car overnight (when it was still legal) to "shower" by jumping in the ocean the next day! We went on a real honest-to-goodness vacation. And, we all have my husband to thank for the planning (ahh...the irony that he did the planning!), and my own firm for coming through with the funds up front to pay for the trip (though re-payment is looming!!!).

The trip was planned because all my brother has ever wanted was to take a family trip to Disney World - no small task for a family that has never taken real family trips - but my "honey" made it happen. Last Monday, after much doubt since my brother had been in the hospital a week before, we all boarded the airplane. All being a total of 8 - my oldest brother and his wife and two children (almost 2 and 7), my brother Chris, my father, and my husband and I. We were certainly the eclectic group. The trip was great. Except for my brother Chris and my sister-in-law, none of us had been to Disney World (well, my father had stopped by the year it opened when he had a few spare moments in FL between missions - but shhh...I'm probably not supposed to know that!).

Anyway, we headed out on Monday, saw Animal Kingdom that night, and went on our whirlwind tour of Magic Kingdom, Animal Kingdom, Epcot Center, Hollywood Studios, Disney Boardwalk, Downtown Disney, Typhoon Lagoon and the All-Star Resorts over the next 6 days. Being the ever-vigilant amateur photographer as I am (yes Kristen - I was entirely "TOO MUCH" this vacation), don't worry I took nearly 1,000 photos that we will be downloading and opening our home for a cookout / Disney slide show soon (figure August / September!).

While we were there, and thanks to connections through my college friends and Rob's contractor friend - we were able to receive many perks including priority seating at Fantasmic, at Illuminations and a very much sought after Reservation at Cinderella's Royal Table (did you all know that she is my favorite - blue and silver now have a meaning to you - think back a year and a half to a wedding!!).

Anyway, as seems to be the way these days until we can figure out how to get a bigger umbrella to cover ourselves from the cloud, we ended our vacation much as we began it - with uncertainty and a visit to the hospital.

For those unaware - one week prior to leaving, I drove to Waldorf to bring my brother up to Hopkins - however we were not able to make the trip - he was just not in a good enough condition - so we stopped at Southern Maryland Hospital. As I have shared with some close friends from that night- if you ever have a valued possession - I will certainly take care of it for you. See, I was trying to get Chris admitted through the ER as quickly as possible - he was having difficulty breathing and was in pain (the cancer has spread through his abdomen and affected lymph nodes are also in his back which we believe is the route of the pain - if you have ever had a pinched sciatic nerve, imagine that pain tenfold and constant). He did collapse in the ER waiting room and started retching. I got him rolled onto his side, but in the fall, his favorite Baltimore 's hat had fallen off and was now under his mouth - as is the case in situations like this, I focused on the random - all i could think about was moving that hat out from under his mouth - don't worry - I succeeded and saved the hat!

Anyway, after several days in the hospital, some doubt about him making the trip - he convinced all of us that he would make the trip because it was important. Well, all was well for the trip - Chris was able to make it out 6 of the 7 days to hang out at least for a few hours with the family. Sunday into Monday he was having difficulties and on Monday morning, the day we were to head back to Baltimore, we were instead heading to Florida Hospital - Celebration Village in an ambulance. Chris's pain had increased in combination with him not monitoring a very elaborate pain medication system (12 hour pills, 6 hour pills, 3 hour pills, 5 hour pills - even for the AR-OCD such as me it would have been a bit much!). He was released from the ER that evening and we returned to the hospital where Disney had comped our rooms for free because that is the class-act organization that they are.

We got new flights for the following day, arriving back in Baltimore after midnight. Wednesday I had set the appointment for my brother at Hopkins so that we could get everything checked out and look into a new pain management program as well as determine if it was in fact the cancer pushing on his back causing the problem. Wednesday morning he was in bad shape again so I took him in earlier than planned where he is currently admitted at the Hopkins Weinberg center. The silver lining is that this is probably the best place yet as the team has all of his records and know all of his medicines as they are the ones who have been treating him for the past 18 months. Currently they are trying to set up a new pain management plan - one that does not require "pill-popping" since he is not capable of monitoring that, and one that will actually get him to a comfort level that he can function. The next steps are to determine the source of the pan - if it is in fact cancer as everyone believes, then the next steps will be radiation for in his back. Radiation can not be used overall as his cancer is too wide-spread and the danger to the healthy cells and the side-effects far outweigh the benefits for non-tumor cancer (i.e. his cancer is spread throughout his lymph nodes in his entire abdominal region and he has recently developed nodes within his lungs as well). If the radiation works then it will alleviate the chronic pain and will hopefully boost his spirits to keep fighting harder. Of course, the radiation will eliminate him from some of the clinical trials that we have been researching lately, and will prolong his involvement with any other clinical trials - but having quality of life is more important at the moment.

As always - more questions than answers...but for the interim, he is in the best place possible at the moment, the next steps...manage the pain, find the cause, hopefully treat the cause, re-research the clinical trails for eligibility if radiation is used (he was only eligible for Stage I as it is - which is right out of the labs and into humans), look into Cancer Treatment Centers of America, talk with Jeff and get all legal paperwork resolved.

So, with the end of this post, I promise I will try to send out more updates as they become available - and it is not that I mind the phone calls, but trying to remember everyone that I have told, who need to know what, and still get my other daily tasks done (like actually work!), well, I invariably forget someone along the way - so please don't think that with this blog you can't call, can't ask questions - it's just going to be easier for me to keep everyone updated this way than any other!

And, I would be very remiss if I didn't thank some very special people who helped while we were "stranded in Disney" - first and foremost Peggy and PC for taking care of our "kids" so we had nothing to worry about (PS - we think you spoiled them very much - we have never seen them so mellow!!), Paul for coordinating so much and being there for his brother even just to say hi!, Cia for always being a leader a shoulder and mostly a friend, Kristen for getting the ball rolling with the right connections so that we had so much while in Disney, Katie and Mike for making things happen in Disney, Marie and Jessi for believing and helping the magic happen - and of course for being the women who inspire me and are always there for me, and of course, as always, my firm - for making things happen and understandings when the craziness takes over!

Good night - and never doubt that dreams do come true, sometimes we just need a little pixie dust - and some amazing friends to help us believe along the way!