Thankful for YOU

It was one year ago, the day after Thanksgiving, that Rory decided (with a little encouragement from his sister-in-law) that the pain in his abdomen was intense enough that it was probably time to head to the ER.  And while we were all optimistic that it was something easily treated, we never imagined the heavy dose of information we were about receive that night.  With a year of fighting behind us, I decided to reflect on that very night.  

Earlier that week, as Rory continued to complain about his pain that seemed to come and go, he finally decided to head to an Urgent Care center.  He was examined by the doctor who believed his problems were stemming from an enlarged prostate and so a CT scan was scheduled for the following week.  We kind of joked about it and went about our Thanksgiving celebrations we had planned for the week.  The morning of Thanksgiving, Rory and I ran the Detroit Turkey Troy (a 10k - for those of you that don't know that equals 6.2 miles).  Rory ran the whole thing and said he even felt great.  Little did we know at the time, that he was carrying around a nerf football sized tumor in his abdomen.  Talk about being strong!  That evening we enjoyed a Thanksgiving meal with both his parents and mine and the following day we headed to his brother's house where we were going to spend the rest of the weekend with his family who came in town from Illinois.  That Friday afternoon we arrived at his brother's house and Rory's pain just seemed to intensify as the day went on.  With a little encouragement from Rachel (Rory's sister-in-law who is a nurse), we decided to eat dinner and then head to the ER where she worked.  We decided that we wanted to get the treatment going for whatever was causing the pain asap and not wait for the scheduled CT next week.  When we got to the ER, Rory was immediately given some pain meds and finally was getting some relief.  I knew he was feeling "good" when he told me to "take a picture so everyone can see what we're doing tonight."

The night Rory checked into the ER

I remember sitting in the ER room waiting for the CT scan results when the doctor came back and told us that he needed to do further testing and that what they were seeing on the CT scan was "not good," but that they didn't want to say anymore than that before more tests were conducted.  And with those words, my gut dropped and Rory was wheeled back for more tests.  With the second round of tests came the spot-on diagnosis that whatever Rory had was an extremely rare tumor and we were advised to seek out a transfer to U of M.  The ER doctor could neither confirm nor deny whether it was cancerous or not without a biopsy, but believed from the looks of things on the scan that it was indeed cancerous.  The rest of the night was the longest night of my life.  In fact, I didn't sleep for over 48 hours and the next few days all we did was hurry up and wait for a room at U of M to open so Rory could get transfered.  While much of the night was a blur, the one thing that stuck out in my head was the immediate reaction I had.  I never got angry at God, I never asked God why, but I remember just saying to God, ok, I've never been in a situation like this before, and I'm not sure how to quite handle it, and so if ever, I NEED YOU NOW!  And with that, He took over.    

Finally on Monday, Rory was transfered to U of M and a biopsy would be preformed on Rory's tumor to figure out whether or not the tumor was cancerous or not.  To make a long story short, by the end of the week, Rory was diagnosed with DSRCT.  But remember how I had already given it over to God in the ER?  Before Rory was even diagnosed, He was already in the works.  When Rory got transfered to U of M, the doctor who happened to be on-call when we were transfered, was a doctor at U of M who specializes in sarcomas and who has treated DSRCT patients in the past.  God put us right where we needed to be to get the proper diagnosis because many times DSRCT is misdiagnosed as lymphoma by doctors who have never had experience with it before.

This year, as we approached the one-year anniversary of Rory's diagnosis, emotions overwhelmed me.   And yet I now understand that it was God's perfect timing, that Rory's diagnosis was the same week where we we celebrate a holiday known as Thanksgiving.  This year, more than ever, I am thankful for the things that really matter: my faith in God, Rory, my family, Rory's family, and our friends.  I am thankful for all the support and prayers that all of you have been giving to Rory and I in this year long battle.  We would be no where without it.  It is your love, and your prayers, and your words of encouragement that keep us going.

Katie, Rory, and Karen

This year Rory and I were able to enjoy a much more calm and relaxing Thanksgiving weekend and for that we have God to thank.  He is the one who continues to give Rory the strength to fight.  For those of you who know Rory, you know he is not a cancer patient.  He is still a 27 year old handsome young man, who continues to live life to the fullest and seems to have more energy than I do most days!

I can't express how blessed I am to have Rory in my life.  He has made me a better person and he has made my faith in God stronger.  When Rory was diagnosed we had only been dating 10 months and while many may believe it would have been easier to walk away, that thought never crossed my mind.  After weeks of dating, Rory was already the love of my life and I was already in it for "in sickness and in health."  Rory, If you ever read this blog, which I know you do sometimes, I love you so much more than you will ever understand.  There is no doubt in my mind that God made us for each other and I am so blessed to have finally found you!

Happy Thanksgiving!

A personal prayer that I have never shared with anyone involved Rory and I's engagement.  While I trusted God with everything going on in our lives, after Rory's diagnosis I continually prayed to God that I DID NOT want a ring on my finger unless it was a promise from God that He was going to watch over the two of us.  When Rory surprised me with the ring, it was so much more than a proposal.  It was a promise from God telling me that He was watching over Rory and I and that we were in the palm of His hands.  Now every time I look at my ring, it not only reminds me of Rory's love for me, but of God's love for us.

HAPPY THANKSGIVING EVERYONE.  I am thankful for all of YOU!

Kristen    

~“Give thanks to the LORD, for he is good; his love endures forever.”   Psalm 107:1
  

  

Has it really been a month?

 Wow, life sure does fly by and Rory and I have been keeping rather busy.  Since my last post, Rory has gone through two more rounds of chemo, a stent replacement, a CT-Scan, and a PET scan.  Rory's second round of treatment was much like the first.  He had very little side effects and pretty much pushed right through it.  Following his second round of chemo (Irinotecan and Vincristine) Rory got his kidney stents replaced and a CT-scan done.  Here's the good news.  Rory's CT scan was the first time we have ever received a good report from the doctor.  Our doctor told us that there are no new spots (YES), that several of the sports have shrunk (YES and YES) and that a few other spots stayed the same or grew very slightly (OK, i'll take it).  According to the doctor, the slight growth could be due to the necrosis in the tumors rather than actual tumor cells growing (in laymen's terms - that's a good thing).  So all around a very much needed good report that has been (in my opinion) long over due!  For the very first time, I left the doctors office feeling like I could breath.

For Rory's third round our doctor added Temodar to the Irinotecan and Vincristine cocktail.  Our doctor informed us that this could really make Rory nauseous and could have a greater effect on his counts.  Well Rory finished this third round last Friday (11/5) and he has yet to get nauseous from this chemo and as I type this he is at the office hard at work.  This past weekend we were able to enjoy a busy Saturday with the Spartan football game, a steak dinner at a local camp, and a get together at my brothers house.  It was a full day and Rory was the last one standing, while I was the one who petered out early!  Also, Rory has finally gotten his appetite back and as you can see from the pictures has been gaining his weight back!  After surgery he was at 126lbs and at our last chemo visit he weighed in at 151lbs!  WOOHOO!  He's been working hard at it, eating non-stop and lifting weights.  So far, so good!  I pray it stays that way.          

One of Rory's biggest requests has been to get his ileostomy bag reversed.  After his surgery in NY we were told by the surgeon there that he could have it reversed sometime in October.  After the positive CT scan results, Rory contacted Dr. LaQuaglia's team last week to see about the possibility of a reversal.  Angela, the NP, got back to Rory, requesting a PET scan be done so that Dr. LaQuaglia could get a better look at what was going on in his abdomen.  Once Dr. LaQuaglia has a chance to look at the PET scan he will determine whether he can have the reversal at this time or not.  In addition to the reversal, while he is in there, Dr. L said he would remove any spots remaining that he can see.  WOW!  We weren't expecting that.  I have prayed continuously that God removes the present sports in Rory's abdomen and that he removes any of the sports we cannot see.  Talk about answering prayer.  Rory's CT scan showed no new sports (prayer answer #1) and Dr. LaQuaglia wants to remove the current sports that are remaining (answer #2).  Rory had his PET scan done just yesterday (11/8) and the results will be shipped of to NY asap.  Please pray that the results show the cancer is continuing to shrink and that Dr. LaQuaglia will be able to reverse the ileostomy and remove any remaining spots that he can see.  I will be sure to keep you all updated on whether or not a return visit to NYC is in our near future!


In other news, our wedding is fast approaching.  Seven months and counting!  I am getting extremely excited and all the details seem to be coming together (including Rory's recovery).

Thanks for all your constant love, support, and prayers.  They keep us going.

~Kristen

1 Thessalonians 5:16-18
Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus.

Winner Round One - RORY

Rory and I at breakfast in Disney

Today Rory and I once again traveled to Ann Arbor to meet with Dr. Schuetze.  The meeting was pretty uneventful with nothing too exciting to report on.  Rory had some blood work done and Dr. Schuetze examined Rory and that about sums the visit up.

Next week Rory will start round two of this chemo treatment and we say BRING IT ON!  Rory,  THANKFULLY, tolerated round one with very limited side effects!  A few days of diarrhea, but no nausea and his counts never plummeted.  He continued to work, go to the gym, and golf.  We were even able to enjoy a short trip to Disney World where we ate ourselves silly and got to ride all of Rory's favorites.  It was a great vacation and one we both desperately needed.

As Rory enters round 2, continue to pray that he tolerates the chemo well and that it works to kill any cancer cells remaining.  Rory's doctors are going to lower his Irinotecan chemotherapy dose by just a smidge in hopes of controlling the diarrhea a little better.  Hopefully that'll do the trick.  We also need prayers that Rory's counts will come up a little bit so that he can receive chemo on Monday.  While his counts never totally bottomed out, they did go down a bit and the blood work from today needs to come up by Monday so that he can start his chemo.  After this round of chemo, Rory will have another CT scan done and we need to hear some good news.  Pray that the scans show signs of healing and NED.

Enjoy the pictures from below.  They are from our Disney trip this past weekend.

Kristen

"pray without ceasing" - 1 Thessalonians 5:17

The Family in Disney :) 

  

Rory and I at "our spot" where Rory proposed to me 6 months ago

Rory and I before the 1/2 Marathon

NED - NOT YET!

Well I know it's been a long time since I've updated (over a month) and I'm sorry to those of you who have been wondering what's been going on (if anyone still even check this).  We've been living life and doing a pretty good job at it.  We've been enjoying weddings, lakes, football games, beautiful weather, golf and just being around all our friends and family.  Life has been pretty good :)    

That was until this past Thursday when we had our follow-up doctors appointment at U of M and learned the results of Rory's CT scan.  After everything Rory has been through these past couple months (surgery and the 8H9 trial) his scan showed us just how stubborn and relentless this cancer is.  He has two new spots of concern with one being the size of a golf ball near his lower left pelvic area and small spots near his liver.  UGH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

So here we are in chemo mode again!  Rory just got done with his first day of Round 1 of chemo.  He will be on Irinotecan and vincristine for this first round and with the next round we will probably add Temador or replace the vincristine with the Temador.  Don't know the plane yet.  Rory will be doing this treatment for about 4 or 5 rounds (1 round = 1 week of chemo/ 2 weeks off).  Our doctor has also been in contact with the National Cancer Institute (NCI) for a Allogeneic Stem Cell Minitransplant.  While I don't know the details about all this I know that the hopes of doing this is to replace Rory's immune system with a new one (from a donor) that will attack the cells that keep making this horrible cancer.  They will first test Rory's brother and sister to see if they are a match and if not he will be put on a donor list to find a match.  If his brother or sister are not a match, finding one can be a pretty lengthy procedure and I would ask that any of you reading this would prayerfully consider getting on that donor list.  So that's our plan for right now.  Our doctors (both here and in NY) are hoping that the chemo will get rid of these pesky tumors present and as of right now another operation is not in the talks.  

While Thursday was a rough day for both Rory and I we have entered into this week 1 of chemo with our heads held high and boxes gloves on.  We again are ready to FIGHT.  So while no evidence of disease is still something we long for to hear from our doctors mouths, we're focused on beating this thing  no matter what it takes.

Continue to keep Rory in your prayers.  Pray that this chemo kills the cancer for good.  Also pray that Rory tolerates this chemo well with no side effects.

Also, as you can see, this cancer is nothing to joke about and more research needs to be done to find a cure for it.  Gift To Cure is an organization whose purpose is to raise money to fund research and to help families financially who are battling DSRCT.  Go to their website http://www.gifttocure.org/ Learn a little bit more about the cancer and what the organization is all about.  There is a lot of good information on their website.  Currently this month they are running a $10 campaign.  The goal is to raise $50,000 but so far only $2000 has been raise!  Please, Please, Please consider giving to this charity!

Kristen

The song "Fight Another Day" by Addison Road is a perfect way to describe what Rory and I are going through right now.  Download it and listen to it.  Here are some lyrics.....

"Have a little faith when the walls cave in,
Pray for strength to fly against the wind.
Will you walk away when the fire gets hot,
Or fight another day?  


Even when your heart's been broken,
He'll be there with arms wide open.
Be strong and his love will lead you to fight another day"


we are fighting ANOTHER DAY!

Post 8H9

Yesterday Rory was able to get the full dose of 8H9.  Hip-Hip-Hooray!  While my original plan was to stay overnight with him in the room as I usually do, the fear of getting too much exposure to the radiation that Rory would be giving off deterred me.  Instead Rory's parents and I left Rory just after his injection which was about 4:30pm yesterday.  He is finally "cool" enough for us to visit with him and be in the room with him and the plan now is for Rory to get discharged hopefully any minute now!

Rory tolerated the 8H9 dose really well and now we just pray, pray, pray that it works and kills all the microscopic cells in his abdomen as well as help in preventing it from coming back.  The plan from here on out is for Rory to have a few more days of PET scans and blood work and we both are beginning to see a plain ride home to Detroit in the near future.  Ahhhhhhhhhh, we can't wait!  That will be a wonderful day and one we are dreaming about!

I wanted to share with you all one of the personal hurdles I have gotten over during all of this.  After Rory's trial dose of the 8H9 on Monday he had to have several blood draws for monitoring.  The problem was the blood draws had to happen during hours where the clinics would not be open.  As they were telling Rory and I this, all I could think was, "well how is he going to get his blood drawn then?  This seems stupid that we didn't plan/time this better!"  Never did I think they were going to ask me to do it!  But there we were, sitting in the hospital room with the doctors and nurses and I was practicing drawing Rory's blood.  For those of you who know me, you know that I DO NOT like blood or needles and both of those things give me the heebie jeebies.  However, I am proud to say that I have since drawn Rory's blood a handful of times and I have been quite the little nurse :).  Blood, needles, pshh!  They've got nothing on me!!!!

Also, if you get a chance, checkout http://www.gifttocure.org/ a nonprofit organization that was recently created for DSRCT awareness, research, and fundraising.  The creator is a mother, Loiss Klopper, whose son, William has been battling DSRCT since April 2010.  You can also become a friend of Gift To Cure on facebook.  As we all have been personally touched by Rory and his battle with DSRCT, let's help other families who are also struggling or will struggle with this horrible disease in the future.  You all continue to do an outstanding job supporting Rory and I through this tough time in our lives, but don't stop there.  Check out Gift to Cure and help as you see fit!    

As always, keep the prayers coming!

Kristen

"For nothing is impossible with God." - Luke 1:37

8H9 - let's try this again

Well after a nice little break from visiting Sloan Kettering everyday we are back for day 1 of the 8H9 trial re-do.  Rory successfully had his port replaced last Tuesday.  The doctors gave us orders to flush the port with heparin every six hours in hopes that this would deter a fibrin sheath from forming again.  So for the past week, Rory has been doing this at the apartment and so far everything has been just fine.  We also came in last Thursday for the doctors to check the port out themselves and to test it.  They flushed it with a lot of saline and everything went in with ease so now here we are waiting for Rory to get his trial dose of the 8H9!  HOORAY!  Once Rory gets the trial dose, he will have to flip flop from side to side every 15 minutes for an hour.  Then they will flush out his abdomen with 2 liters of saline.  After all of this Rory will be taken for a PET scan so they can see if the 8H9 is going all throughout his abdomen.  Then we will be back tomorrow and Wednesday for more scans.  On Wednesday Rory will also be admitted to the hospital and then on Thursday he will get the full dose of the 8H9.  Come Friday he will hopefully be "cool" enough to go home.  Meaning, the level of radiation from the 8H9 will be safe enough to leave the hospital.    We are very excited for this process to be starting again and are very hopeful that this time it will actually work.  Please, please, please pray that the port does its job and that the 8H9 far exceeds the doctors expectations of killing any microscopic cancer cells.  


Rory has been feeling great these past couple of days.  His appetite has fully returned and he is once again enjoying food!  Something that Rory LOVES.  He has also had more energy and has been able to do thing.  This past weekend my parents along with my brother, Jason and his girlfriend, Amy, have been here in NYC with us.  We have gone to a couple movies, did the tour bus around NYC, and have eaten ourselves silly.  Rory's company treated all of us to a wonderful dinner at the oldest steakhouse in NYC called the Old Homestead Steakhouse.  It was delicious and we were so full.  It was our best night here in NYC.  We were able to enjoy each others company as well as the food and just relax.  That is a night none of us will ever forget and something we will talk about forever.  


Despite not being able to go home August 7th and being homesick, our spirits are high!  God is definitely taking care of us and we feel so very blessed to still have this opportunity for Rory to get the 8H9.  I will continue to keep you all updated.  I know I haven't written anything in over a week.  I was home for a little while for my grandma's memorial and then with my family visiting, we have been busy. But that's a good thing!  I don't know when we will be heading home and while we are hoping soon, we are being patient (or at least trying to be). 


Kristen


"Give thanks to the LORD, for he is good; his love endures forever." - Psalm 107:1      

Bump in the Road

UPDATE!!!!!!! I just wanted to let everyone know that Rory's catheter surgery is no longer tomorrow, but will be Tuesday, August 3rd instead.  Long story short, they wouldn't have the 8H9 drug ready for Rory to receive next week and they don't want to put the catheter in too soon or else the same thing will happen as last time (blocked catheter).  So by waiting till Tuesday the catheter won't be in Rory as long and the fibrin sheath will have less time to form.  Rory will get the 8H9 the following week (week of August 9th).  


In other news... My Grandma Debandt (my dad's mom and last surviving grandparent) passed away this morning.  Please keep my family in your prayers.  My Grandma Debandt has prayed for several years that her "homecoming" would be soon and her prayers have finally been answered.  She is in a much better place now and is pain free.  I will be hopefully flying home in the next couple days to be with my family and say my goodbye.    

Just as we were getting excited about an August 7th homecoming, it seems that God has other plans for us.  We are in the "who knows when we are coming home" phase again.  As you all know Rory was suppose to get the 8H9 this week and well, that didn't go as planned.  Rory's catheter has formed a fiberin sheath (debris build-up) arond it preventing the 8H9 drug to enter his abdomen.  Instead of getting the full dose of 8H9 on Friday, Rory will be having a minor surgery to remove the defective catheter and Dr. LaQuaglia will be replacing it with a different temporary catheter.  We don't know when and if Rory will be receiving the 8H9 treatment and as of right now everything is on a day-to-day basis.  We are remaing positive.  Obviously we want to try and fix this problem so that Rory can recieve the 8H9 and we're not givng up.  We knew going into this that the 8H9 was a phase I trial where details are still extremely new and are still getting ironed out.  We still have faith in it and we are now praying that the surgeon can successfully replace his catheter with a new one and that Rory wil be able to receive the 8H9.  The surgeon said that this new catheter would just be a temporary one that they would remove from Rory before we go home.  His thoughts were that if he could just get a catheter into the abdomen where it needs to go long enough for Dr. Modak to administer the 8H9, everything should work just fine.  We shall see!  Just continue to pray that this all works out and Rory gets the 8H9.  We need for a successful surgery on Friday and for Dr. LaQuaglia to be able to replace the catheter with a new one that will allow for Rory to get the 8H9.  We don't know it to be a miracle drug yet, but without trial participants, we, along with the doctors heading this study, will never know .

It seems that we can never get to comfortable with the way things are going before we seem to hit a bump in the road.  And while Rory and I are both taking this pretty well, we are both just homesick and had our hopes on being there soon.  We both remain confident in God's plan for Rory and are just taking things one day at a time.

Numerous songs have hit home for me during all of this so instead of a verse, I will share this song with all of you.  Download Josh Wilson's, "Before the Morning".  The whole song is amazing, but the verses that always stick out to me are these...

"Maybe, there are things you can't see
and all those things are happening
to bring a better ending
some day, some how, you'll see, you'll see"

"and hold on, cause there's good who love God,
life is not a snapshot, it might take a little time,
but you'll see the bigger picture"

"Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming"

"so hold on, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling, 
it's just the dark before the morning"


Keep the prayers coming :)  


Kristen 





  

Today is 8H9 day

Everything here has been going really well.  We have been so blessed by Nancy and her family who have opened their homes to us.  This past weekend we were able to escape the city for a bit and head to Nancy's home.  It was beautiful and just what we needed.  It has the "up north" feel and it was just so nice to see lakes and trees and to sit outside on the deck.  Not to mention Nancy and her family spoiled us by cooking for us and feeding us all weekend long.  Nancy knew Rory was on Mission: FOOD and boy was Rory loving it.  She stocked her cabinets with all the fatty snacks you could think of and Rory was having at it.  I think he gained 3 pounds just the two days we were there!  Nancy and her family are such WONDERFUL people and there is just no way we could ever begin to repay them for all that they have done for us.          


Today Rory will be getting his 8H9 trial dose.  We are already at Sloan in an infusion room waiting for the dose to be ready.  Once it's ready, he'll get it injected, be pumped with fluids to slosh it all around in his abdomen, and then he'll have a PET scan.  Tomorrow, Wednesday, and Thursday we will be back up here for blood work and more scans.  Then on Thursday Rory will be admitted to the hospital and he will get the full dose of the 8H9 on Friday and released on Saturday.  I will be sure to keep you all more updated as this week goes on so you know how he is doing with the 8H9.  Pray that his body accepts the 8H9 will minimal to no side affects and that the 8H9 far exceeds the doctors expectations to mop up any cancerous cells left.  


Also, when we met with Dr. Modak last week he informed us that they are also working on getting a cancer vaccine released to them.  I really don't know a lot of details at all, but apparently it is in the hands of a pharmaceutical company.  The vaccine that has been created apparently was designed for the same molecules that are found in the DSRCT tumors so Dr. Modak thinks it should work for DSRCT tumor patients.  NOW, that is really all I know and even that is mumble jumble to me.  However, I just want you all to be aware of it and be praying that this pharmaceutical company will release the drug for a study in DSRCT patients.  We all know that sometimes the interests of pharmaceutical companies (money) do not always match a patients interest (life).  


One more thing, a VERY important thing,  we will be coming home August 7th!  WOOHOO!!!!!!!!!!!!!!!!!!!!!!  


Kristen


"Jesus looked at them and said, "With man this is impossible, but with God all things are possible." - Matthew 19:26

Life outside of the hospital

Even though the time spent in the hospital seemed to crawl by so slowly, I can't believe we have been in New York for two weeks already!  Since we got out of the hospital last Friday (July 16th) not a lot has happened other than relaxation! YES!  Rory is still in his recovery stage, tired and still a little sore, but each day he gets a little better.  Since it has been so crazy hot in NYC we haven't really gone out much of anywhere because it would just be too much for Rory right now.  Rory's biggest complaint is of boredom which tells me he is feeling better and antsy to do things.  Now we've just got to get his body on the same page, it just takes time.  We've gone out to dinner a couple nights and made a trip to best buy (you know he's really feeling better when he wants to go to best buy).  

Yesterday we had a follow up appointment with Dr. LaQuaglia.  Everything checked out just fine and he told Rory that it was time to put some weight on (say 20 pounds or so!!).  So we are on mission: FOOD!  Rory is getting his appetite back, craving foods, and is on his normal diet.  Tomorrow we meet with Dr. Modak, the pediatric oncologist, to discuss the 8H9 protocol and what our schedule will look like for next week.  Rory will also have a CT scan tomorrow morning to see what's left in his abdomen prior to the 8H9.  Most likely Rory will get the trial dose of the 8H9 on Monday and then he will have the full dose either Wednesday or Thursday.  

So things are going pretty smoothly here.  No complaints other than all of us being a little homesick.  I can't express enough appreciation to Nancy, Karen's college roommate, for loaning us her apartment while we are here.  It has been wonderful!  She has even spoiled Karen and I with gift certificates for manis/pedis/and a mini massage!  THANK YOU, THANK YOU, THANK YOU!  I can't wait to indulge! 

If you are interested in sending Rory cards or anything (he would love it), send me a text message or an email  (kdebandt@gmail.com) and I will get you the address to our home away from home.

Kristen

"I will praise you, O Lord my God, with all my heart; I will glorify your name forever." - Psalm 86:12            

Day 10 - We're bustin' outta here

We're getting discharged today from the hospital.  When?  I don't know, but sometime today!  Rory is completely off of his "tree" (IV stand) and his catheter is out.  Now all we're waiting for is to see the doctor and for him to say, "see ya later!"

We met with Dr. Modak yesterday (the doctor in charge of the 8H9 trial) and the plan is for Rory to get his trial dose a week from this monday.  He will then get the full dose on either that Wednesday or Thursday.  So next week should be pretty quiet.  We will have to come up to the hospital to meet with the surgeon team and Dr. Modak and I believe Rory will be having a CT scan done.  Other than that, it's sight seeing time!  Dr. Modak also said that after Rory gets his full dose of the 8H9 we should be able to go home by the end of the following week.  That means only 3-4 more weeks here if all goes according to plan :).

Yesterday Rory had some visitors that really made his day.  We all know Rory loves being active and doing things, so when he is tied down to the hospital he really gets down.  Yesterday when Rory got up I could tell he was having a "blah" day because he was bored and still had to be here.  Well that would all change when some surprise visitors would stop by.  Rory knew that Mark Ellis from AOL was going to stop by, but he had no idea that Tim Armstrong and Jeff Levick would be joining him.  He was shocked and this totally made his day.  They surprised him with Yankee tickets to Saturday's game (so we're getting out just in time!), an iPad (yes, you read that right), and a war plan signed by General Patraeus.  Not to mention the smile they put on Rory's face and the overwhelming support they showed for him and all of us made our day.  From day one AOL has been extremely supportive of Rory going through this tough time.  I have really been amazed with their loyalty, understanding, and support they have provided for Rory.  This was just the icing on the cake.  And the visitors didn't stop there.  Beth Mach, Rory's old boss and still good friend, stopped by later that evening to cheer Rory up as well.  It was great chatting with her and it was nice for Rory to have someone to talk to other than myself.  He and I both really enjoyed spending time with her.

Well, I better start packing things up.  I am anxious to get out of here and I know Rory is too!  As we leave the hospital I may not be updating as much (hopefully we'll be busy sight seeing), but I'll do my best!

Kristen

"This is the day the LORD has made; let us rejoice and be glad in it." - Psalm 118:24

Day 8 & 9 - yesterday and today

You know it's going to be a good day when the doctor comes in to see you and says, "you guys like it here or would you like to go home?"  Go home...well at least to our "borrowed" New York apartment (thanks Nancy so much!) that will be our home away from home for the next few weeks.  Dr. Laguaglia told Rory and I that as soon as we get him off the IV pain meds Rory can go home and that this should happen tomorrow!  WOOHOO!  Rory should also get his catheter removed tomorrow.  So the goal today is to weed Rory slowly off the IV pain meds and back on to his patches and hydro pills for breakthrough pain.  Then he'll slowly come off of those things as well.  We are hopefully meeting with Dr. Modak today as well to discuss the 8H9 treatment and what our schedule for the next few weeks will look like.  We believe this treatment will be outpatient, but we know will be up at the hospital a lot of the days for scans and blood work.  

Yesterday Rory got his drain bag out of his abdomen and they also removed his epidural.  He did an abundance of walking and was hardly in his bed.  He is getting extremely antsy and bored, which is a good thing because you know he's feeling good, but a bad thing because he gets restless and anxious.  Today he is having some visitors from AOL stop by.  He doesn't know this yet (I'm sure if he did he would want to shave! haha) and I know he'll be surprised to see them and excited to see some other faces besides my own and his parents :).  

Today the doctors also put Rory on his normal diet!  He's pretty excited about that, but the hospital food isn't all that great and his stomach is so small right now he can eat only a little at a time.  But he's doing great and snacking a lot and hopefully tomorrow he will be eating somewhere outside of the hospital :).

If you all would pray and extra prayer for Xander and Patrick, two other DSRCT patients.  Xander is back home after having surgery and the 8H9 treatment here in NYC and is starting another round of chemo.  Patrick is headed back home tomorrow.  He was unable to receive the 8H9 due to scar tissue blocking his port, but hopefully he will be able to get it in the future once that clears up.  He is also going to be starting another round of Chemo when he returns home and hopefully heading out to Maryland for a clinical trial of a new type of stem cell transplant that is suppose to be starting up in the next couple of months.  I don't know the details about this, but he is going to keep us informed as it is something Rory might be doing as well.

Kristen

And the prayer offered in faith will make the sick person well; the Lord will raise him up. If he has sinned, he will be forgiven. - James 5:15

P.S. As I was typing this the nurse brought Rory and doughnut and he devoured it :)

 

Day 7 - which was really yesterday

I found I am much more motivated to write in the morning.  So I will fill you all in on yesterday!  Rory got his NG tube out of his nose around noon and what a blessing that was.  It was bothering his throat so much he was not talking to anybody.  His bowels woke up and so they decided it could come out and he could start on clear liquids.  He had some apple juice, water, jello, a little bit of broth, and an iced tea.  But he is starving!!!!  I think he's finally getting his Rory appetite back!  Hopefully today they will let him start on a little bit of food.  His current cravings include pizza, hot dogs, nachos, seasoned fries, and a milk shake :)  Yesterday he also walked 42 laps around the floor which 14 laps is equal to 1 mile so for the day he logged in 3 miles!  Today we already went for our morning walk and did 14 laps (1 mile) which takes us just about 40 minutes.

When Rory had the NG tube in nobody talked to him and he was even quiet with the nurses.  Mostly pointing and nodding for communication and we all know Rory is not a quiet one!  When the NG tube came out, he was a new man and all the nurses took notice.  They're all stopping us in the hall and talking to Rory and laughing with him.  Rory is Rory again.  Talking to everyone, singing and beat boxing, dancing in bed, and joking around.  It's good to have him back :) If things keep going this well we hope to be released soon (don't want to get our hopes up - but we are) and enjoy some sight seeing!

I still can't get over how flat his belly is and that just a week ago he was still carrying around those tumors.  We are excited to get on with the next portion of his treatment, the 8H9, and pray that it kills anything that is remaining.  We just want to keep this monster away so he never has to go through another surgery and that it never comes back.

Thanks for all the continued prayers, they are definitely working!

Kristen

"1 I will praise you, O LORD, with all my heart; I will tell of all your wonders. 2 I will be glad and rejoice in you; I will sing praise to your name, O Most High." - Psalm 9:1-2

Day 5 & 6

So I know I said I would update daily, but some days not much happens and I get tired.  Please forgive me.

The past two days not a whole lot has happened.  Rory is getting much stronger each day.  Yesterday he did some little walks and today he did some big walks.  He did 20 laps around the floor and this finally got his bowels moving (he'll probably hate me for sharing that).  When is bowels are moving more frequently he will be able to get the tube out of his nose which is bothering his throat like crazy.  So he's taking steps in the right direction, literally.  Other than that, there's not much to report.  I'm learning my way around the city and I can't wait for Rory to get out of the hospital so we can start enjoying it together.

I know it's easier to ask God for things than it is to thank Him.  At least it is for me.  I often forget to thank Him for just the everyday things and this is something I work on daily.  So I ask that you all not only pray and ask God for Rory's complete healing, but I also ask that you make it a point to thank Him for everything He has already done for Rory.

Kristen

"give thanks in all circumstances, for this is God's will for you in Christ Jesus"
 - 1 Thessalonians 5:18 

Day 4

I can do all things through Christ, who strengthens me. - Philippians 4:13

This verse is perfect for the day Rory had.  Around 1pm today, Rory was moved from the recovery floor to the obersation floor.  He has his own room and is still being monitored closely but I am now allowed to stay overnight with him.  I chose this verse to open this blog because today Rory walked!  The nurses and doctors really wanted Rory to sit up today and to walk a little and he did it!  Around 6ish he sat up at the end of his bed for quiet a while and then he decided he wanted to walk.  He went for about a 5 minute walk up and down the hall and he looked so strong!  He was so anxious about sitting up and walking because he feared the pain, but he did wonderful!  After he was done and back in bed, he told us all that it felt so good to walk and that he felt better having done so!  I'm sure he'll be worn out from his walk and will be able to sleep well tonight!  Or at least I hope so!  Another positive is that he is experience little to no pain.  Whenever the nurses ask him for his pain level on a scale of 1 -10 he says 1!   

Other than that the day has been pretty quiet and I'm ok with that :).  The more Rory walks the sooner his bowels/stomach will wake up and the sooner he'll get some tubes out!  It is so amazing though how great he looks.  Even though he's just been through a huge operation he already looks like the pre-tumor Rory. 

Keep praying that Rory continues to progress on a daily basis.  He's doing so well and you can tell he's fighting and trying to do his best so he can get out of here!  All the nurses seem to love him (can you blame them?) and think he's the perfect patient!   

Kristen   

Day 3 - God is So Good

Today, around noon we were able to go back into the recovery room and see Rory.  He was awake and able to talk and soooo excited to see everyone!  He was in a little bit of pain/discomfort and very sleepy, but it was just so good to finally talk to him.  His first words out of his mouth to us was, "We did it!"  And yes we did!  All of us, together.  Whether you prayed for him, thought about him, performed surgery on him, whatever... everyone has been apart of this.  

We couldn't visit very long because the most important thing for him right now is his rest and this made it very hard to leave him.  He will spend one more night on the recovery floor per the surgeon's request to just give him more time and extra eyes watching him.  They continue to give him units of blood.  Besides the 8 units he had in surgery, he had 2 units right away post-op, 2 units last night, and another 2 units today.  Finally today his blood pressure started to come up.  They also had Rory sitting up in bed rather than laying down and hopefully tomorrow the next step is to walk a little.  You wouldn't believe his scar.  Right when we got back to where Rory was he showed us his scar.  He's very proud of it and it looks amazing.  They didn't use staples, they used some sort of medial glue and when it heals it's going to look like nothing more than a really long scratch.  His stomach is so flat and I am so excited to finally one day give him a hug and not have a huge belly in between us.  I know you all will be amazed when we return and you get to see how flat his stomach really is.      

One thing I forgot to mention (and I don't know how I could) was that when we had our meeting with the surgeon post-op, he informed us that the tumors he removed from Rory's abdomen were mostly fluid filled with very little cancerous activity!  Meaning the chemo was working :).  The nurses also told us today on our visit that during surgery the surgical team removed 3 LITERS of fluid from Rory's abdomen.  That is just crazy!!!  

I cannot begin to tell you how impressed I am with this hospital and the surgeon, Dr. LaQuaglia.  Not only is he an extremely smart man, but he is a man of God.  Every morning he has his hands blessed because he believes that they are instruments of God.  Today when Dr. LaQuaglia was making his rounds and met with Rory, Rory thanked him for a job well done, and you know what Dr. LaQuaglia's response was to him?  He told Rory, don't thank me, thank the Big Man upstairs!  Talk about goosebumps.  That just makes me cry every time I tell that story.  He is a perfect example of using your God given talents to do good!  WOW!        

But you want to know what the best part of my visit with Rory was today?  As I was leaving I said to Rory, I love you so much.  In return he said, I love you so much more.  As I shooked my head no, he said, "yes, and I have the scar to prove it."  I guess I can't compete with that!  :)  God is GREAT!  

Kristen

Rejoice in the Lord always; again I will say, Rejoice.

—Philippians 4:4 

Day 2 - Surgery

Well today has been a very long day and we are all tired.  Rory was taken from his room at about 6:45am to start getting prepped for surgery.  They took him away about 8am into the OR and the incision was made at about 9:24am.  Our first update came at 11:30 and we were told the largest tumor had been removed and they were still working on getting other tumors out of his abdomen.  At 2pm we got another update that they were still working on clearing out his abdomen and that they still couldn't tell us when he would be done.  About 3:30 we got the call that surgery was complete and that we would be meeting with the surgeon shortly to discuss the surgery.  We waited for what seemed like an eternity for the surgeon to come in and I could literally feel my heart in my throat.  Rory did great!  The surgeon went through the whole surgery with us and informed us of everything that was done.  They removed two huge tumors and multiple smaller ones that were all over Rory's abdomen.  The surgeon told us that he got everything he could see!  He also had to take part of Rory's bladder and rectum but was able to leave the spleen.  Rory needed 8 units of blood during the transfusion, but the surgeon assured us that all the bleeding was controlled and just apart of the surgery since it was such a long and major operation.  At about 6:30 we were finally able to go into the recovery room and see Rory.  He was still sedated but he looked GREAT.  He had several different tubes coming out of him and was swollen in the face, but again, he looked GREAT!  I stood at the foot of his bed amazed at what had just happened.  Most of you reading this know Rory well and know that for the past 8 months he has looked about 7 months pregnant.  Well today as I stood at the foot of his bed, watching him rest peacefully, he had NO BELLY.  His stomach was as flat as a table top and I just couldn't and still can't get over it.  It is truly AMAZING and a step in the right direction to beating this horrible monster.  I know that we still have a long road ahead of us, but this just feels and looks soooooooooooooooooooo good!  

To date, this has been the most trying day of my life.  I leaned on God all day and have just allowed Him to carry me for I could not walk by myself and make it through the day without Him.  I knew Rory would do just fine.  I appreciate all of you who prayed continually throughout the day and your prayers were definitely felt.  I remember sitting in the waiting lobby just feeling warmth and comfort because I knew we had people everywhere praying for Rory.  I really felt each and every one of your prayers and God was definitely with Rory in that operating room.  

These next few days and months are extremely important for Rory's recovery.  With any operation there are always the risks of infections and complications post-op and so I continue to ask for you all to pray on his behalf that God gives him the strength to bounce back from this operation and that his body is able to fight off any potential infections.  I also ask that you continue to prayer for Xander and Patrick and everyone else who has been effected by this DSRCT.   

Right now Rory is still in the recovery room where he will remain for the night.  We all came back to our hotel since no one is allowed to stay over night and Rory is in good hands there with a nurse and PA at his bedside all night.  Hopefully tomorrow he will be moving to a room.  The nurses in the recovery room were all optimistic and said that the surgeons were very pleased with the way the surgery went and that Rory was doing great.  He is one tough cookie and I know he will be so excited to see his new flat stomach :).  I am so exhausted physically and mentally and I just hope I can get some sleep tonight.  I want to be by Rory's side, but know he's in good hands and needs his rest.  I just can't wait for him to finally opens his eyes and I can say I love you to him and tell him how proud I am of him.    

Kristen

"Cast all your worries on Him because He cares for you."  - 1 Peter 5:7  

"The LORD is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song." - Psalm 28:7

Day 1

It's 9:30pm and I am sitting in a "play room" on the pediatric floor of Sloan Kettering using their computer typing in examine gloves (who knows what kind of snotty fingers have been all over this thing).  Anyways, my computer will be here tomorrow and then I won't have to worry about that!

Rory had a full day!  We got to the hospital at 9:30 this morning and Rory had some blood work done right away and then was given the awful 2 liters of GoLytely which he was to consume it all by 2 this afternoon.  Well this is a horrific task not only because of the volume (2 LITERS!) but also because of the horrible oil taste (so I'm told) this GoLytely stuff has.  Rory tried to drink it but could not tolerate it and resorted getting the feeding tube put in his nose.  The whole time I kept thinking to myself...this would be a good would you rather question...would you rather drink 2 liters of GoLytely OR get a feeding tube stuck up your nose and down your throat!  Anyways, once they got the tube in Rory was fine and said he wished he would have started with the tube from the get go!  Now we wait and the idea is to have Rory cleared completely out! 

Rory is also in the process right now of receiving two bags of blood.  His hemoglobin was a little low and so they are helping that out right now.  He has been napping most of the afternoon/evening.  Tomorrow they will come and get him about 7am to start prepping him for surgery with the incision taking place probably around 9.  They will not give us a time frame of how long the surgery will take - just telling us they will stay in there until they have done a good job.  That's comforting. 

Other happenings today - I met Jessica and Xander who I have been communicating with through emails and facebook.  Xander is an 11 yr old boy who also has DSRCT and was the first to receive 8H9.  Jessica has been very helpful in giving us heads up on what to expect and to give us insight into things we would have otherwise not thought of!  Xander has successfully had his tumors removed and went thought the 8H9 protocol and they are headed home tomorrow!  It was sooooooooooo good to see Xander today and see a testament to this new 8H9.  I believe this may be God's answer to all our prayers through modern medicine and I'm very excited about it!  We also met another DSRCT patient here named Patrick.  He was diagnosed 5 years ago at the age of 20.  He is now 25 and looks GREAT!  It was so comforting to talk to him and he was so wonderful and kind!  It is so nice to have others here going through the exact same thing (DSRCT) because they can reassure you and they know EXACTLY what you are going through!  As all of you pray for Rory, please pray for both of these guys and all of the other patients with DSRCT! 

Well tomorrow is a BIG day.  My stomach is literally in my throat and my heart seems to be jumping out of my chest.  Yet at the same time, I have this sense of calm and I know that God is totally in control.  He pulled Rory and I together so we could battle this together and he put us here at Sloan Kettering.  We are at His mercy and His grace and we are just apart of His plan - something I am more than willing to be apart of!  We want to be living testaments to His way, His truth, and His life!  I logged on to the Intentional prayer for Rory page and looked and the spreadsheet and immediately started crying.  When it started on Tuesday it had only three columns and a few names on it and today there are more columns and more names and EVERYONE in our lives is behind us, supporting us, and going to God in prayer on behalf of us in this scary and exciting time!  I can see how God is using this situation to pull everyone around us closer to Him and I stand in awe!

From the bottom of my heart and I know from Rory's heart and his families heart as well... THANK YOU!  You have no idea how much the prayers mean to all of us and continue to give us strength! 

I better get back to the room and see how Rory is doing!  I LOVE ALL OF YOU! 

God Bless,

Kristen

"He said, "If you listen carefully to the voice of the Lord your God and do what is right in his eyes, if you pay attention to this commands and keep all his decrees, I will not bring on you any of the diseases I brought on the Egyptians, for I am the Lord, who heals you." - Exodus 15:26     

July 6th

Our flight leaves today at 3:05 and we should land in New York somewhere around 5pm. Tomorrow Rory will check-in at Sloan Kettering for his "cleansing" and surgery prepping. July 8th marks the big day and Rory will go into surgery about 9am.

Thanks for all your love, support, and prayers!

Kristen