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 :)