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!
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!
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