|
||||||||||||
Click here to go back to the main page.
Friday, August 21, 2009 8:47 AM CDT
Ok, let's try this again. I typed up my entire update, saved it (I thought), went back to check on something and ~poof~ the whole thing was gone. Oh well, onto the good news.....Jordan's scan came back clear and we are so thankful! No Evidence of Disease continues to be our favorite phrase in the world. He has a follow up visit with Dr Gillan on Monday, so as long as that goes well and his bloodwork comes back fine, we'll be very happy.
Jordan has been having a good summer. He has decided to go to Tunxis Community College to take some general courses because he doesn't know what he wants to do in the future. We think this is a great idea because the school is only 10 minutes from our house and we're hoping that once he is a student there, his eyes may be opened up to different careers he didn't even know existed. His plan is to go to school full time and work part time. So far he hasn't had much luck finding a job, but hopefully that will change once the college kids head back to school.
We ask that you keep our DSRCT family in your prayers especially Daniel, Josh, Jason, Patrick, Zach, Denis, Meliza and Rhema.
Thank you for checking in on Jordan.
Love,
Karen
Saturday, June 20, 2009 9:18 AM CDT
It's official......Jordan is a high school graduate! We are very proud (and thankful ;-) ) for this accomplishment. I was a little tearful while sitting at the ceremony thinking back to 5 years ago when they told us Jordan had a 20 percent chance of survival. There were times when we feared we would never see this day. Watching him walk in with his class last night will be a memory I'll cherish forever. His plans for the future are a little shakey at this point. This may be partly my fault because for the last 5 years he has heard me say "let's just take things one day at a time" over and over again. I was referring to his battles with cancer, but he may be having a difficult time letting this train of thought go. Right now he is thinking he wants to go into radiation therapy or something with the military, but I'm not sure the second idea is even an option for him with his medical history. But for the next little bit of time he'll enjoy the graduation parties and have some fun this summer and then hopefully figure out where he's headed.
Jordan's health is good at this point. He is being worked up for some residual swelling from his past surgeries, but all tests have shown that there is no recurrence of cancer. He still has a hard time gaining weight and other than that he is doing fine physically.
Prayers to all of our DSRCT family especially Josh, Daniel, Zach, Patrick and Rhema. Rhema just had her debulking surgery yesterday and the doctors were able to get all but one of the tumors. We wish her a speedy, uneventful recovery.
Thanks for checking in on Jordan and we hope everyone has a safe and happy summer.
Love,
Karen
Saturday, April 18, 2009 6:06 PM CDT
Good news from Dr. Gillan......Jordan's scans were clear. There was an area on the CT scan again that caused a "moment" of concern, but the PET scan was perfect. After further review of the CT scans the doctors concluded that Jordan continues to be in remission and we are very, very thankful.
Our prayers and good wishes go out to our DSRCT family whether you have battled this disease in the past or your battle continues on....you are always in our thoughts.
Thanks for checking in on Jordan.
Love,
Karen
Saturday, March 21, 2009 4:56 PM CDT
Jordan went for his CT and PET scan on Thursday in Hartford. We'll let you know the results when we hear from Dr Gillan. Please pray for clear scans and please keep the Vodicka family in your prayers as well. Their son Ryan passed away last week after battling DSRCT for almost 5 years. This family is amazing.
On a lighter note....Jordan got his driver's license on March 5th. He is very excited and we are very scared...I guess that's normal right?? :-)
Happy Spring!
Love,
Karen
Wednesday, February 25, 2009 7:41 PM CST
5 years ago today, we placed Jordan in the hands of a wonderfully talented surgeon, Dr. Michael LaQuaglia at MSKCC. That day was a turning point for Jordan because he has been free of DSRCT ever since then. This is why we choose to celebrate this date. We still worry about recurrence, especially regarding the Leukemia, but for now we will cherish the fact that he is NED. (no evidence of disease) and we thank God for this tremendous blessing.
Thank you to Jordan's special care givers in Hartford and New York....Dr Gillan, Dr. Bertsch, Dr Kushner, Dr LaQuaglia, Emily, Karina, Lucy, Deana, Liz, Diane I. and Rich. To our families and friends....to say that we couldn't have made it through without you is an understatement. Thank you to all of you from the bottom of our hearts.
Congratulations Jordan for reaching this miraculous milestone!
We pray that many, many more DSRCT warriors will reach this milestone along with you.
Tuesday, February 17, 2009 5:51 PM CST
Hi everyone,
Sorry for the Christmas decorations that were still adorning Jordan's site in the middle of February....it's been a busy winter. Jordan was supposed to be going for his routine 3 month scans tomorrow, but he's been fighting his usual stubborn sinus stuff and an ear infection which has made his lymph nodes pop out of his neck so we are on stand by for the moment. He saw Dr Gillan today and she put him on a different antibiotic to see if that will do the trick and then he'll go for scans in about a month. Other than that Jordan's been doing well. He's on the wrestling team and he's won a couple of medals which is pretty great since this is his first year.
My mother-in-law went home after being in the hospital for 3 months following her stroke. She is improving everyday and she's very happy to be back home. Matt got his cast off of his wrist a couple of weeks ago. Unfortunately he missed the wrestling season, but baseball is right around the corner. Zach and Em are status quo....Zach has been going to baseball clinics and Emily has been taking acrobats for the first time. She was a little iffy on whether she liked it or not, but now that she can do a backbend (and recover!!) she likes it much better. Bob and I just ping pong between schools and activities, but it's good!
Please keep everyone on the DSRCT site in your prayers especially Ryan, Ray, Jason, Daniel, Josh and also Jackson's family. There are no words to comfort those who have lost a child, but I hope it helps a little bit knowing others think of you often and keep you in their prayers.
I'll update again after Jordan's scans.
Love,
Karen
Thursday, December 4, 2008 10:15 AM CST
I hope that everyone is finding something joyful to celebrate during this holiday season. We were very blessed to find out that Jordan's scans came back clear! You could say that we were a little bit apprehensive after the threat of recurrence reared it's ugly little head again after the last round of scans....actually that's putting it mildly! Thank God all is well!
Hoping that you and your loved ones are able to share special moments and make precious memories this holiday season.
Love,
The Marquis Family
Monday, November 24, 2008 9:48 PM CST
Just a quick update....Jordan has been doing well since his last scans. His next set is scheduled for the day after Thanksgiving so if everyone could say an extra prayer for him that would be greatly appreciated. No more excitement like last time around....just normal, clear scans please!!
Something scary always seems to happen to our family around the holidays and this year is no exception. Bob's mother suffered a stroke on Friday and she is unable to move her left leg at this point. Her left arm is affected as well, but she is able to move her fingers a little bit. She was in the ICU for 3 days and the doctors plan on transferring her to a rehab hospital in a day or two for a couple of weeks of therapy and then we'll go from there. It is very sad to see such an energetic woman just sitting quietly in bed. She was using a few words and gestures today that I can't repeat here though so we know she still has her feisty spirit, thank God! We ask for prayers for her recovery as well.
Blessings and good wishes to all of our family and friends during this holiday season especially those who are battling illnesses or have lost a loved one. You are always in our prayers. Happy Thanksgiving to all and Happy Birthday to Bokka (my grandfather) who turned 96 today!
Love,
The Marquis Family
PS Thanks to you who have taken the time to check in on Jordan and drop him a note. Your words are truly appreciated.
Tuesday, October 7, 2008 6:05 PM CDT
CONGRATULATIONS JORDAN!! Today you are a 5 year survivor of DSRCT. It has been a difficult journey filled with ups and downs to say the least, but today we are filled with only happiness and gratitude to God that you are here with us, torturing us at times yes, but I suppose that's the job of a healthy teenager. We pray that you continue to beat the odds and focus on making your future as bright as possible. We love you!!
Love,
Mom, Dad, Matthew, Zachary and Emily
Saturday, September 13, 2008 7:49 PM CDT
Dr Kushner called and told us that he had 3 radiologists look at the scans with him and they are all in agreement that Jordan is fine. THANK GOD!! I can't describe the relief that has descended upon this house. Like I said in my last posting, we try to be very positive, but sometimes you can't help but think "what if". Dr Kushner said that it appears to be fluid, most likely bile, but they definitely say it is not a tumor. He will have his scans repeated in 3 months as usual and we'll see if it's still there or not. Thank you to all who called or sent messages of support. We can now breathe easy for another few months.
Hugs and prayers,
Karen
Thursday, September 11, 2008 8:55 AM CDT
Sorry it's taken me so long to post an update. To say this summer seemed ridiculously quick and busy is putting it mildly. We were able to get away for a weekend in Vermont, but that's about it. I'm glad the kids have returned to school and they seem to be settling back into the routine nicely.
Jordan did well in summer school. He passed with an 82. He is now officially the family expert on "The Great Gatsby" since he got to read and review it twice.(poor thing!)
On a more serious note.....Jordan recently had his routine scans done. An "area of concern" has shown up near his pancreas that was never there before. We are waiting to hear the results from an MRI Dr Gillan did as a follow up in Hartford, but all CDs of the scans and MRI have been forwarded to Dr. Kushner at MSKCC so now we have to sit and wait and remember to breathe. Please say a prayer for Jordan that this is not cancer again! We are trying to remain positive until we know otherwise. Greg and Raymond have gone through similar circumstances like this before and they turned out to be just fine. That's what we're focusing on, but extra prayers never hurt!
Our DSRCT family remains in our prayers as always, especially those that continue to fight the fight.
Thanks for checking on Jordan.
Love,
Karen
Saturday, June 28, 2008 10:23 AM CDT
Happy Summer to everyone. We've been non stop with baseball and end of school activities, but I'm not complaining. Next year we'll have 2 kids in highschool...how did that happen???? Matt will be a freshman and Jordan will (hopefully) be a senior. He struggled this year after missing half of freshman and all of sophmore year but he did OK in everything except for English. I think the transition back to school was more difficult than he had anticipated. We just found out that he has to go to summer school but we're hoping he'll learn not only English, but that he might have to actually put a little effort into his schoolwork to do well. Unfortunately he's learning the hard way. Let's hope for a smoother senior year!
Healthwise he's been battling sinus infections and a skin rash that nobody seems to know what to do about. This has been an issue since his transplant but it seems to have escalated this winter. Maybe it's because his resistance is down after being exposed to all those germs at school. They've ruled out graft vs host disease and fungal infections, but still nothing they try to treat the sinuses or skin seems to work for long. Other than that he's doing well physically.
Our thoughts and prayers are with everyone on the DSRCT site especially Maggie's family. And to all those who continue to battle this disease.....stay strong!
Enjoy everyday.
Love,
Karen
Sunday, May 11, 2008 9:56 AM CDT
HAPPY MOTHER'S DAY!!!
I can't think of a better present than the one Dr Gillan gave me last night...... Jordan's scans are clear again!! We feel so blessed that he remains in remission from the DSRCT and AML. We treasure these days of good news and good health because we know how quickly that can change. I wish happiness and peace to all the mothers out there.
Love,
Karen
Monday, May 5, 2008 8:48 PM CDT
Hi everyone,
Thanks to all who sent good wishes my way....I appreciate it and I'm feeling much better. Jordan saw Dr Gillan at CCMC last week and she was very happy with how his physical exam went as well as all his bloodwork. He looks great! She never received a copy of the previous PET scan even after numerous requests to compare it to the MRI so Jordan's next set of scans are being done in Hartford tomorrow. Please keep him in your prayers that his scans remain free and clear of disease especially since the DSRCT family has suffered further losses and relapses. Our thoughts and prayers are with you all.
Love,
Karen
Thanks for checking in!!
Tuesday, April 15, 2008 9:08 AM CDT
We're still waiting for the MRI results from either the doctors in New York or Hartford, but since it's been about three weeks and no final word yet, we're living with the ol' adage no news is good news.
A few weeks ago, I went for a routine visit with my doctor and learned that I had an abnormal cyst on my ovary. My CA125 came back normal and an abd/pelvic CT showed no other abnormalities besides the 9 cm cyst. I was hopeful going into surgery (even though it was April Fool's Day) that only the ovary and cyst would be removed, but the cyst turned out to be pre-cancerous and the decision had been made pre-op that if the cyst came back anything other than completely benign a full hysterectomy would be done, so that is what they did. Thankfully everything else including lymph nodes came back benign postoperatively, so no further treatment will be needed. Thank God! It's two weeks today and I'm feeling better everyday. The best part of the whole experience was being cared for by the wonderful nurses I used to work with on Families are First at Bristol Hospital. They were truly amazing and I actually almost enjoyed my hospital stay....well, the first 24 - 36 hours were a bit challenging let's say :-), but after that it was so comforting to rest and recuperate while catching up with the girls. (I even thought maybe I should think about going to an RN refresher course so I could go back to work....we'll see :-) ) I must say that after having abdominal surgery I am in awe of the DSRCT gang even more than I already was. It hurts!! And then for them to have to go through chemo and radiation and after affects.....it's simply mind boggling to me how they continue to fight the fight so valiantly and positively! Absolutely awe inspiring! Our thoughts and prayers remain with all the DSRCT fighters and their families as always especially those who have recently passed away or relapsed.
Our hearts are with you.
Love,
Karen
Friday, February 29, 2008 7:02 PM CST
Hi everyone,
Sorry for the delay in updating, but it's been a little hectic around here with the kids being off from school and Bob having his back surgery. We've also been in limbo waiting for results from Jordan's scans. The good news however is that his PET scan was clear! BUT....the doctors at MSKCC are a bit concerned that Jordan is still having issues with chronic sinusitis and swollen lymph nodes so they want him to see Dr LaQuaglia to see if he thinks a biopsy is necessary and they also wants him to see an ENT doctor. Dr Prockop said that these kids sometimes need sinus surgery if the problems linger long enough. Also, the CT scan showed an area on his spine that they want worked up further. They don't think it's anything cancer related, but they just want to be sure it's nothing to worry about. First they were going to send him for a bone scan, but after discussing it amongst the whole group they've decided on an MRI instead. They're thinking it could just be an old injury from one of his snowboard or dirtbike crashes. Jordan's also supposed to have an appointment with Dr. Gillan (his oncologist in Hartford) soon, so he is going to be very busy getting all of these things done. He is feeling a little better and his coughing and congestion seem to be improving finally. So all in all, we're a little concerned with all these other things that have to be dealt with, but most importantly we're thrilled his PET scan was clear. Thank God!!
Please keep Jordan in your prayers as well as everyone that continues to battle DSRCT or for the families who have recently lost their loved ones especially Nikki, David and Nate's families.
Love,
Karen
PS I guess I should also add that Bob is starting to get around a little better. He was having horrendous muscle spasms for the last 4-5 days, but his doctor started him on Prednisone yesterday and that seems to be helping. His incision doesn't bother him at all, so if we could fix the muscle spasms he'll be much happier.
Monday, February 11, 2008 8:44 AM CST
Hi everyone,
Jordan is having his next set of scans on Monday at Sloan Kettering, so please keep him in your prayers that he remains cancer free. His stuffiness is still lingering after two rounds of antibiotics over the past month, so I'm a bit of a wreck wondering why. If I buy anymore Sudafed I think the police will come knocking on my door. Bob is having his back surgery to repair the herniated disk on Friday, the 22nd.
At this point our problems are minor compared to some of our friends on the DSRCT site. So many seem to be getting bad news or even sadder......are preparing to say goodbye to their loved one. Please keep Caleb, Nate and their families in your prayers as the end of their fight draws near. Patty, Nate's mother, has been such a champion of all DSRCT patients fighting for the most up to date information and treatments available for everyone that it doesn't seem fair...not that anything in the cancer world is....but it's doesn't seem right that Nate should be at this stage. And I'm sure if they read this they will say "why not Nate?", but that's because they are such amazingly wonderful people. They always try to look at things in the most positive way. Please say a little prayer for comfort and peace for Nate and Caleb as well as Ryan, Maggie, Ray and also Nikki's family. And a big congratulations to Greg, Callie, Ryan H. and Raymond A. for getting some good news that gives the rest of the DSRCT gang a reason to celebrate and remain hopeful.
We're all in this together.
Love,
Karen
PS Happy Valentines Day to everyone. Make sure to let everyone you love know how much they mean to you. XOXO
Thursday, January 10, 2008 8:23 PM CST
Jordan has been fighting a cold for a couple of weeks, but it didn't stop him from going to school, working, seeing his girlfriend, hanging out with his friends.....basically burning the candle at both ends. How dare I suggest that he stay in the house for more than 5 minutes, maybe lay down and rest a little bit so his body could fight off the cold. He "is 17 years old" in case anyone didn't know ;-) Anyway.....we've just gotten home from a visit to the doctor. Jordan is now tucked in on the couch with an ear infection, sinus infection and pneumonia. See, his mother's not so dumb afterall is she????!!! Hopefully the antibiotics will kick in soon and he won't end up in the hospital. Also, Bob had been complaining of back pain and nerve pain down his leg ever since his knee surgery this Fall. The doctors initially thought that maybe he was favoring his knee or maybe he was experiencing after affects from the femoral block for pain control after surgery or maybe it was sciatica, but we found out a few days before Christmas that he has a herniated disc in his lower back. He finally got in to see the neurosurgeon today and the doctor wants to see if a strong anti inflammatory will help for a few weeks, but most likely he will end up having back surgery. Ahhhhh...the fun just continues in this house. I've been trying to find someone with happy news on the DSRCT site, but I've been having a tough time! Best wishes to everyone for peace and healing in 2008.
Love,
Karen
PS Hey Bets,Karen I. and everyone else that's asked me to update the picture on the bridge. I finally did it! Better late than never, right?
Monday, December 24, 2007 7:05 AM CST
I know my Christmas message should be merry and bright, but I've just been sitting here thinking back and it seems that this year has been especially challenging for alot of people. Many faced the loss of a loved one, some expected and some not. Others faced health problems, financial challenges and family issues which led to emotional rollercoasters. Some were so unfortunate that they experienced all of these. Good things did happen as well....many people started new jobs, families welcomed babies into their lives, people moved into new homes, some even had renewed love bless their hearts...that's a big one! I guess all of these things are part of life, but it's definitely easier when you and everyone you know is happy and healthy, right?!!! I pray that this new year brings amazing discoveries in battling cancer, especially DSRCT, peace in the hearts of those who did have a difficult year and joy to all.
From our home to yours, we wish you a very happy holiday season and a wonderful 2008.
Love,
The Marquis Family
Bob, Karen, Jordan, Matthew, Zachary and Emily
Thursday, November 29, 2007 5:51 PM CST
Just a quick update to let you know that Jordan's scans came back all clear. We are very happy about the results, but at the same time we are also sad because the DSRCT family has lost another member. Nikki S. passed away last week. She was diagnosed with DSRCT a few months before Jordan back in 2003 and then just a short time ago she was diagnosed with Leukemia. She was preparing for her bone marrow transplant, but unfortunately she passed away the day after Thanksgiving. She was only 16...heartbreaking. Please say a prayer for her family as well as for the Hobbs family because Caleb has just entered hospice.
Love,
Karen
Wednesday, November 21, 2007 5:23 PM CST
Happy Thanksgiving everyone! Sorry for the delay in updating. Some of you have been lovely enough to leave messages anyway and I really appreciate that. Jordan is doing well. We went to NY last week and although we are still awaiting his CT and PET scan results, we were reassured that his bloodwork and physical were normal. I always tend to be waiting for the Leukemia to make a surprise reappearance, so I was thrilled to know his bloodwork was perfect. So now we continue waiting for the results from the scans, but I look at it as no news is good news. New York was fun. We all went and stayed at the Ronald McDonald house in hopes of hanging out with our 'ol pal Rich, but he wasn't there. We did bump (almost literally!) into a family we went to Florida with earlier this year, so that was nice to see them. We didn't get to do much walking around because Bob was only 3 weeks post ACL repair, so he could only walk so far, but we managed to find a good restaurant and hang out in a park with the kids for a little while. Keep those fingers crossed that we get the scan results soon and that he continues to be in remission. Bob's sister had her kidney removed on Monday and is sore, but recovering well.
We wish everyone a peaceful and happy holiday filled with good friends and good food!
Love,
Karen
Happy holidays to all.
Monday, October 22, 2007 8:01 AM CDT
Hi everyone,
Just a quick note to say that Jordan is doing fine. People have been asking me why I haven't been updating and it's because there's nothing to report on Jordan. (and that's how I like it!) Bob had his ACL repair done on Friday so he'll be home for the next 3 or 4 weeks recuperating and since I was going crazy with all of the kids out of the house, I started a part time job a couple of weeks ago taking care of a lovely 77y.o. woman in her home. The hours are very flexible and it's a great way to ease back into the working world. Our baseball season officially ended yesterday so that will feel strange not going to 4 games every weekend, but it will be a nice break too.
Remember that even though I haven't been writing on Jordan's site I am still always checking in on everyone on the DSRCT page. You are always in my thoughts and prayers and I'd like to ask for everyone to say a special prayer for my sister-in-law because she has recently been diagnosed with kidney cancer.
Thanks for checking in on Jordan.
Love,
Karen
Saturday September 1, 2007
Hi everyone,
Jordan and Bob had a good, but long day in NY last week. Jordan had a CT scan, PET scan and a visit with the team. (and lots of waiting and waiting in between) Their first appt was at 7:15am and they clocked out of the parking garage at 4:45pm. I called Sloan yesterday to find out about the scans and they said Jordan is "all clear" except for a minor lung infection. "NED"......thank God!! We also found out that he can start the reimmunization process so we head to the doctors on Wednesday to begin that.
The kids all started school on Thursday. Everyone had a good day and except for the bus coming about 15 minutes earlier than I thought it would in the morning, things went pretty smoothly. I was surprised that I wasn't feeling as joyful as I thought I would be after they all left. (Maybe I do really like them after all. :-) )
Love,
Karen
Please keep our friends who continue to battle this disease in your prayers especially Caleb, Nate, Ryan, and Patrick.
(Betsy....I'll try to update the pictures, but I'm not really good at that.)
Monday, August 13, 2007 12:53 AM CDT
We've recently returned from our vacation in Rhode Island. We had a good time for the most part and the weather couldn't have been better. The kids head back to school in a little over 2 weeks and this will be the first time that all 4 kids are in school for the whole day. So exciting ....... for me, at least! :-)
Jordan is supposed to be scheduled for a check up and repeat scans in NY at the end of the month so we're just waiting to hear from Memorial Sloan Kettering about when that will be. He has his scans every 3 months so please keep him in your prayers that he remains in remission from both cancers, DSRCT and Leukemia.
Special prayers for Nate, Caleb, Maggie, Mikey, Raymond, Ray, Ryan and all the others who continue to fight and special thoughts to Marlena's family during this time of loss. No words can ever take your pain away, but please know we are all better people after being touched by this wonderful woman.
Best wishes to Greg Orgel and Michael Friedman who are both about to leave for college...enjoy everyday! You are both such giving young men. Inspirational.
Love,
Karen
Thursday, July 26, 2007 9:19 AM CDT
Hi everyone,
Things are settling down in the Marquis home and we are all enjoying the summer. Bob took Jordan, Matt and Zach fishing yesterday for the first time in a long time. Bob and Zachary were the winners of the "who will catch the most fish" contest, but they all had fun.
Jordan went in to see Dr Gillan yesterday. She was happy to see him since his last visit with her was in March. The visit went well and she was happy to see that his leg healed nicely, his chest port is gone and he's gained some weight back. Lots of jokes and comments from the whole staff about dirtbikes while we were there. Even the volunteer who hangs out in the waiting room entertaining the little kids with her life sized puppet knows Jordan loves dirtbikes. He tries to avoid her, but yesterday she was having the puppet make rev-v-ving noises at him and asking lots of questions about dirtbikes. Let's just say that Jordan was less than thrilled, but I had a wonderful time watching the whole interaction!! :-)
Last year at this time we were living in NY as Jordan recovered from his bone marrow transplant. We treasure the good days because we know how quickly things can change. It's hard for me to grasp that almost 4 years has passed since his original diagnosis. On one hand I can't believe that it's been that long and on the other it seems like we've been living with cancer and it's life altering affects forever....strange.
A very special member of the DSRCT family is in critical condition right now and I know she would love a few more prayers being said for her. Marlena is a treasure to everyone who knows her....always staying so witty and positive as she battles DSRCT and always offering support to others along the way.
Love,
Karen
Thursday, July 12, 2007 6:18 PM CDT
Hope everyone's summer is going well. We were able to go to Vermont for a quick zip over the 4th of July holiday. This was our first time up to my father's camp on Round Pond in over 2 years so we were very excited to finally get back up there. Not the best weather, but not the worst either.....we all had a great time.
Jordan is doing great physically. He is getting lots of exercise and gaining some weight. We are having some normal teenage issues with him at the moment, but we are hoping that this too shall pass. I suppose it's not a bad thing that he's acting (out) like all the healthy teenagers, but Bob and I were hoping that he would have a little more sympathy for us after all he's put us through. (:-) I'm kidding!) Wishful thinking I suppose, right?! He tends to give us a hard time sometimes when he's feeling good. The last time I complained about this, he was diagnosed with Leukemia the following week so I will stop complaining and just try to take things one day at a time and hope that his level of common sense increases soon. When we look back to where he was last year at this time, hanging out in his isolation room at Memorial Sloan Kettering after his bone marrow transplant, we can't believe he's come so far. Almost 4 years of battling cancer is alot for a kid to go through so I guess we'll have to cut him a little slack!
Prayers to all those continuing to battle this disease. We think of you everyday and wish you strength and HOPE.
Love,
Karen
Saturday, June 16, 2007 12:36 AM CDT
Jordan is feeling well and he's happy that summer is just around the corner. He has already finished with two of his tutors and once he finishes reading and reviewing The Crucible with Mrs. Gregor he will be completely done for the year. I went to a meeting last week with his team at Bristol Eastern High School and he is all set to return to school in the fall as a junior. He is a few credits behind, but they are letting him earn 1/2 a credit for every 70 hours of physical activity he takes part in over the summer, so I think that will help. He is really looking forward to going back to school, so much so I told him he's giving me a complex. Not all teenage boys get to hang out with their mothers day in and day out for years at a time. He's one lucky boy!! :-) Let's all pray that things go as planned!
He had a great post op visit at Sloan Kettering a couple of weeks ago. He doesn't have to go back to see them until August so we're hoping to have a great summer to make up for last year. He does have to go to a dermatologist to figure out what to do with his rash, but at least we know it's not graft vs host disease. They are thinking eczema so we'll see what the experts want to do about it. He also has to touch base with a pulmonologist because of his continued wheezing, but other than that he is doing well.
The DSRCT family suffered another loss this week. Mark DeWalle was initially diagnosed right after Jordan over 3 1/2 years ago and he did remarkably well until he relapsed about 5 months ago. He gave his all as he battled this monster. Please keep his family in your prayers as well as those who continue to fight especially Marlena, Nathan, Ryan, Ray, Caleb, Maggie, Raymond and Mikey.
Thanks for checking in on Jordan.
Love,
Karen
Saturday, June 2, 2007 1:08 PM CDT
Great news!! MSKCC called last night to let us know that Jordan's scans were clear. We are thrilled and we ask that you keep everyone battling this cancer in your prayers especially Marlena, Ryan, Mark, Raymond, Nathan, Maggie, Caleb and Ray.
Jordan is healing well from his surgery and he has a post op visit on Monday.
Love,
Karen
Friday, May 25, 2007 10:18 AM CDT
Our trip to NY went well. Wednesday was a long day of testing and scans stretching from 8:00am until after 5:00pm. Jordan just goes with the flow, from one test to the next and doesn't complain. He was most concerned about being unable to eat all day Wed. until after the tests and then again the next day in preparation for the surgery, but they let him eat once his PET scan was done so he was eating a 12inch hot pastrami sub from Subway by 1:45pm. He did have to scoff it down in 15 minutes flat because he had to be NPO for 2 hours before his CT scan, but he managed just fine. We do not have results from the scans yet and I'm sure we probably won't until after the weekend so we'll post it when we hear from the doctor. Thursday went smoothly too once they settled on his surgery time. Dr LaQuaglia had a couple of emergencies come in and they were trying to flip flop cases, so we went from a 12:30pm start time, to almost being canceled to finally being scheduled for 8:00am which worked out great for us. We had planned to stay until Friday, but because of the early start time and because Jordan did so well, we were able to head home sooner. We left Sloan Kettering at 11:30am, stopped at Subway again for lunch (hello!! we're in NYC! Could he pick somewhere else to eat???), checked out of the Ronald McDonald House (this is a process), hopped on a train at Grand Central and were sitting at Matt's baseball game by 5:30pm. (Thanks for picking us up Dad!) Anyway, we had a quick but tiring 36 hour visit to the city, were able to visit with some friends from our trip to Florida and Jordan's favorite nurse, Liz and now we just wait for the scan results with positive thoughts mixed with a trace of paranoia. Jordan's a little sore today, but doing great. Keep those prayers coming for his test results to be wonderful and for all of the people on the DSRCT site especially Marlena, Nathan, Raymond, Ryan, Maggie and also Jordan's Florida fishing buddy, Nick, who we just found out has relapsed with neuroblastoma. Cancer just doesn't play fair, that's for sure!
Stay safe and have a great holiday weekend.
Love,
Karen
Saturday, May 19, 2007 2:06 PM CDT
Hello everyone,
Sorry it's been awhile since I've updated. It just seems there is never enough time in the day at this time of the year. Other than Bob having his first cold/sinus infection in over a year and Matt pulling his hip flexor muscle during a game the other night, ALL IS WELL. (It's difficult to type that with my fingers crossed!) Jordan and Emily are finally over the stomach bug. He is feeling good and gaining some weight back. He even got a job....his first little bit of independance in a long time! He is working at a Subway sandwich shop a few times a week. He loves it even though he's still not allowed to eat there himself yet. (no deli meat) We are heading to Sloan Kettering on Wednesday to have all of his tests repeated and to have his chest port removed. Please pray that we receive the news that he remains in remission from both cancers and that all goes smoothly. Thanks so much for checking in on Jordan. Prayers and best wishes to all of our friends who continue to fight this battle....you are always in our thoughts.
Love,
Karen
PS Congrats to my sister, Kathie, and her husband, Mark, on the newest addition to the family. Dylan Mark was born on May 16th and he's very cute!
Friday, April 20, 2007 2:49 PM CDT
Jordan had the stomach bug again this week. The poor thing has been hit twice this winter. Fortunately, he seems to recover pretty quickly. Emily just fell asleep at 2:00 in the afternoon (she never naps) which makes me happy and worried at the same time....I have a feeling she'll be the next one to come down with the bug.
Jordan's visit in NY went well yesterday and they were back home in record time. The doctors are waiting to see how his bloodwork comes back and if all is well, they will schedule a visit in May to have his chest port removed (yippee) and all of his other tests including pulmonary function test, PET scan, CT scan, bone marrow aspirate and lumbar puncture. We will probably end up staying in the city for 2-3 days for all this to be done.
Please keep the DSRCT gang in your prayers, especially Marlena, Nate, Maggie, Ryan and Raymond.
Have a great weekend. Enjoy the sunshine....finally!!
Love,
Karen
Friday, April 13, 2007 6:45 PM CDT
Jordan continues to get stronger everyday. He's been on his dirtbike every chance he gets. When we asked his orthopedist if he could start riding again he said, "Sure, go ahead....I could always use the business." Great! Not what I wanted him to say because Jordan only seemed to hear the "sure" part. He completely missed the sarcasm. He is wearing all of his gear and he tells us he's taking it easy, so what are we to do. You have to live life while you can, right?! He really, really wants to get a job. It's a little tricky because it has to be somewhere with limited exposure to people, so his options are limited. He has been on a couple of job interviews, so maybe he'll be working soon and earning some money like he wants. (which will keep him busy and off the dirtbike a little bit....a win-win situation :-) )
The kids are on April vacation next week so hopefully this lovely Nor'easter they have predicted will come and go quickly. We're only supposed to have rain, but I guess it's supposed to get pretty crazy with torrential rains and wind on Sunday night into Monday. Poor northern New England....it looks like heavy wet snow for them again. How annoying in the middle of April! Nate and Patty...I hope your part of Maine misses out on the snow. (what are the chances?)
Thursday, Jordan has an appointment in NY with Dr Boulad and the BMT. The plan is to test Jordan's immune status and if all is good, make plans to remove his port. He can't wait! We'll let you know how the visit goes.
Thanks for checking in on Jordan and especially all of you who still write in the guest book. We love to hear what's going on with all of you. Take care. Please keep Marlena, Ryan, Maggie and Nate in your prayers.
Love,
Karen
Friday, March 30, 2007 8:45 PM CDT
Sorry I haven't updated in 2 weeks, but as Raymond's mom says "no news is good news." We've been very busy, but nothing exciting has really happened to warrant an update....not that I'm complaining mind you...but I decided to wait until after we saw all of the doctors this week before updating. Jordan's been trying to exercise his leg a little bit to get more mobility back. Actually, it's amazing how well he's getting around. He's one motivated kid that's for sure. I shouldn't say "nothing has happened"....actually two very important things happened this past week. Jordan made his Confirmation on Sunday and on Wednesday, the 28th, he reached the one year mark after being diagnosed with Leukemia. Congratulations Jordan! This was a LONG, difficult year, but thanks to alot of amazing people helping us out, we all made it through. We couldn't have done it without you and we thank you from the bottom of our hearts. Sometimes I feel like I'm still treading water and holding my breath just waiting for the next thing to happen. I try not to think like that, but these last 3 years have worn me down. I'm a bit more leary than I used to be. I try to remind myself to just keep taking things one day at a time and if Jordan and the rest of us are healthy and happy then all is well and all that matters. We're good.
This week we've spent our days touring the various doctors that we visit routinely. Unfortunately, the visits just happened to land 4 days in a row this time. Poor Em and Zach had early dismissal days on Tuesday, Wednesday and Thursday due to parent/teacher conferences and they spent their afternoons coming with us to see the doctors. Jordan's visit with Dr Gillan on Tuesday was fine, uneventful just like we like it and fairly quick. In and out in 2 hours. Matthew went to UCONN on Wednesday to see his orthodontist and we found out that after subjecting him to a palate expander not once, but twice over the past 18 months that his palate has returned to the point it was at when we started and he'll eventually need surgery to align his jaws once he stops growing....lovely. Thursday we were off to see Jordan's orthopedist. He said his leg has healed nicely, but besides breaking his leg he stretched his ACL and it's still "loose" so Jordan will have to do exercises to get the strength back and prevent the need for surgery. He could go to physical therapy, but Dr Cucka suggested that since we are lucky enough to have our very own knee expert living in the house (Bob...with 6 knee surgeries under his belt) perhaps he could just work with him and avoid the need for scheduling appointments around all of our other appointments. That was nice of him....we'll see how that goes. And today, Bob and Jordan left for NY at 5am for a visit with Dr Boulad at Sloan Kettering for his monthly check up. He is very happy with Jordan's progress and is hoping that after they retest his immune status next month that they'll be able to discontinue the IV Pentamadine, IVIG and remove his chest port. That would be so exciting for him! Keep those fingers crossed and prayers coming not only for good results next month, but for Jordan to remain cancer free. Prayers are also needed for some friends of ours on the DSRCT website....Marlena, Nathan, Raymond, Ryan, Mikey and Maggie. There are no words to describe just how life altering fighting cancer can be for the patient as well as their families. Stay strong gang!
Love,
Karen
Wednesday, March 14, 2007 6:14 PM CDT
Hello to all,
Jordan is doing great. He had a visit at the Children's hospital in Hartford last week for his IVIG and Pentamadine. We had a nice surprise while we were there....Dr Gillan is back from Iraq! She looks wonderful! She said she saw alot of scary stuff, lots of sadness, but the troops are amazing. It was great to see her.
Jordan went to see his orthopedist today. He said his leg is healing very well and his cast was able to be taken off. His knee is still swollen and he needs to wear a brace for now. Jord says his knee looks like Jello.
Jordan has been trying to sell his dirtbike for months now because it was too small for him and he finally sold it last week.....DON'T GET EXCITED...he bought a bigger one the next day. I took one look at it and said, "Great! Maybe this time you can break both legs at once!" Dr. Cucka said he is still forbidden to ride for at least another month and he'll re-evaluate at that point...one more month of peace ........ hopefully! Thanks for checking in on Jordan.
Love,
Karen
Sunday, March 4, 2007 11:03 AM CST
Hi everyone,
Sorry for the delay in updating......I've been busy running my homebased orthopedic ward. You'll be happy to know that both of my patients are doing very well. Bob has already returned back to work and had a great post op visit. Once Jordan got past that first week of being in the cast, things have gone smoothly, but the first week was not fun for ANY of us!
The two of them hobbled into MSKCC on Friday after driving for almost 5 hours in the torrential downpour to be seen by the team. Everyone had fun coming in to check on them and hearing about what happened. They had all heard different versions so Bob and Jordan had to tell the story over and over again. Luckily they did not bump into Dr LaQuaglia while they were there! ;-) Anyway, his bloodwork looked great and they continue to be happy with his recovery from the transplant. His lungs are still a little wheezy, but Jordan admitted that he hasn't really been doing his inhaler like he should ever since he broke his leg. Hopefully we'll get back on track with that.
Other than that, all has been quiet in the Marquis home. Unfortunately others have not been as blessed. The DSRCT family lost two lovely girls this past week, Vikki and Nicole. Both had been battling this cancer for about 16 months. Please say a prayer for their families during this time of loss.
Love,
Karen
PS Thanks to everyone who's been writing on Jordan's page. We love hearing from you. (witty, very witty as usual John!)
Thursday, February 15, 2007 7:46 PM CST
Hello to all,
Well you know how it goes around here....never a dull moment for long. Let me just say, I might as well keep my circus theme songs playing around the clock! I'll just get right to it. Jordan has finally been able to enjoy a few days of riding his dirtbike after waiting for over 8 months for the green light to do so. Unfortunately he fell off of his dirtbike the other day and broke his leg. He is casted from his upper thigh to his toes and he is not very happy. This is the first time he has gotten hurt on his dirtbike in over 4 years of riding so I guess I can't complain about the dangers of dirtbiking too much, although I did manage to get a few remarks in here and there. Bob, my love, twisted wrong at work last week and hurt his knee. He's been complaining ever since and he finally went to see his orthopedic surgeon on Wednesday for an evaluation and surprise, surprise..... his surgery is scheduled for next Friday. Bob is an expert on knee surgeries thanks to those good 'ol football injuries. I believe this will be his 6th. Unfortunately this time it's his good knee. Hopefully it will be a quick surgery and uneventful recovery. Is that too much to hope for??
Jordan goes back to Dr Cucka in a month for a follow up visit and Xray. All of his other appointments that were scheduled in New York and Hartford for the next few weeks had to be rearranged, but I think we're set at this point. On a brighter note, his eczema appears to be improving greatly!
Alright, I gotta run....the package store closes in 15 minutes. Oh I'm just kidding!! :-)
Love,
Karen
PS Gang from the DSRCT.com site....I haven't been able to check in on anyone in a few days, but I'm hoping to do that tomorrow. Hope everyone is doing well. You're always in our prayers!
PSS Very witty entry in the guest book, Johnny!! You should feel no guilt in knowing that Jordan spent his last day before breaking his leg hauling wood for you! No-o-o guilt at all!
Friday, February 9, 2007 7:40 AM CST
Hi everyone,
Jordan's trip to NY on Tuesday went well. He had repeat scans done that showed that the lymph node swelling from the Epstein Barr virus is improving. At this point MSKCC is holding off on further doses of the Rituximab. Dr Kernan said that his lungs sound better and Dr LaQuaglia was happy with how he is healing from his surgery. His skin is giving him some problems. For the past two months Jordan has had patches of red, flaky skin on mainly his neck, but sometimes it's on his face as well. Sometimes it's completely gone....but it always seems to come back. His skin has been EXTREMELY dry since transplant and he's not a big fan of the Aquaphor cream they encourage him to use. They thought it was a fungal infection, but now they're thinking it's eczema. Dr Kernan ordered two new creams and special shampoo and soap for him to try. If there's no improvement then she's sending him off to a dermatologist in a few weeks. Today we'll be in Hartford at CCMC for most of the day where he'll get his IVIG and then it's back to NY in 2 weeks. Other than that he is doing well. Still skinny as a stick, but he's working on gaining some weight back. When he was diagnosed last March with Leukemia, he weighed 125 lbs. Since then he has grown 3 inches and still only weighs 116 lbs. Also, the other news was that the team at MSKCC has decided to have him continue with home tutoring which is what we guessed they would say. He wishes he could go back to school, but hopefully he'll be strong enough to go back in the fall. Poor Jordo has been stuck bonding with me day in and day out for almost a year now!
Thanks for checking in on him and please keep those fighting this illness in your prayers, especially Vikki who has just entered hospice, Nate who is battling again for the 2nd time, Josh who just received his bone marrow transplant, Marlena, Ryan, Raymond, Callie, Maggie....oh it's so sad that the list goes on and on! Keep those prayers coming!
Love, Karen
Thursday, January 25, 2007 3:02 PM CST
Hi everyone,
Nothing new to report which is a nice thing really. Jordan continues to heal from his surgery and can't wait until he can get back on his dirtbike. His visits to the doctors and hospitals have spaced out a bit for the time being. Alot of times I feel like I should be somewhere else, racing off to an appointment of one kind or another and then I think, "no....you don't have to be anywhere else today." Strange.
Jordan is doing great with his tutors. No decision has been made yet as to if and when he'll be going back to school this year. I think that if it was not the middle of January and cold and flu season, they might be more willing to let him head back, but seeing that it is...they're a little hesistant. It's fine with me. I say keep him out until that immune system is really strong and functioning well, especially because he is doing so well with his tutors. But that's just me...that is not Jordan's wish, so we'll see what happens.
Take care and thanks for checking in on Jordan.
Love,
Karen
Tuesday, January 16, 2007 7:41 AM CST
Jordan's surgery took just about 2 hours and he did well except for some nausea/vomitting. He is sore, but was able to be discharged to the Ronald McDonald House for the night. He will see Dr LaQuaglia around 8:30am for the all clear to head home. I must say I was worried that Dr LaQuaglia might find something besides scar tissue after learning that Mark DeWalle had relapsed with DSRCT after being clear for 2-3 years. Thank God it was just twisted scar tissue! Please say a prayer for Mark as he starts his next battle as well as all those already fighting.
Thanks to all of you who called or sent messages of support for Jordan.
Karen
Sunday, January 14, 2007 8:38 PM CST
What's a little change in plans, right?......Bob and Jordan have left for NYC, but Matthew and I are staying home. The stomach bug that has been whipping around our home town has decided to pay Matt a visit. He started feeling sick during the night and is still achey today. We decided to postpone his trip to the city until next week so that he didn't share any germs with the kids at Ronald McDonald or at Memorial Sloan Kettering.
Dr LaQuaglia said that Jordan won't have to stay overnight in the hospital, but since the surgery isn't scheduled until 2pm he wants him to stay at Ronald Monday night to rest before heading home on Tuesday.
Please keep Jordan and his wonderful surgeon, Dr LaQuaglia, in your prayers. Thanks.
Love,
Karen
Friday, January 12, 2007 7:13 PM CST
Sorry for the delay between updates....it feels like we haven't stopped running since Halloween. We've been very busy through the month of December ( like everybody!! ) with the holidays and Jordan's birthday and then to start the new year off with a bang, we were invited to go to Disney World with 12 other families from the Ronald McDonald House. We feel so lucky to have been chosen to go! (Thanks Rich!!) We spent 5 days zipping through all the parks with a wonderful bunch of people (54 people in all I think from all over the country). The kids had a ball making new friends and going on as many crazy rides as they could. Bob was even able to sneak in a quick bass fishing adventure in Downtown Disney! (Thanks Jim and Nick!) We arrived home on Tuesday night around 11:30pm.
Bob and Jordan spent all day Thursday in NY visiting with the Bone Marrow Team, getting a dose of Rituxamab IV, and having his pre-op visit with Dr LaQuaglia for his upcoming surgery on Monday. They've decided not to removed his port at this point because he is still getting 3 IV meds monthly, but they still want to repair the hydrocele. They did D/C his IV Micafungin that I was giving him twice a week at home, so that's a step in the right direction. Then today, Jordan spent all day at CCMC in Hartford getting his other two IV meds.....not a very fun few days for the guys!
Oh and one more thing...while we were in Florida, Jordan reached his "200th day" post transplant. YEAHH!!!!! This means that they can start loosening up on some of the restrictions, but because his immune system is still healing, most will remain intact. They said it can take over a year for his immune system to be back to where it was pre transplant, but the good news is that the doctor told Jordan that he can start riding his dirtbike again so he is thrilled. His bloodwork is showing that he is still very susceptible to certain viruses so they are making us bring poor Matthew back in with us on Monday to donate some more of his blood. He is just so excited....NOT! It seems that whenever Matthew has had a day off from school lately, he's been tortured in some way. Teeth pulled on election day, a "garden hose" inserted in his arm to donate T-cells on Veterans day, and now on Martin Luther King Day he'll be once again donating blood for Jordan. Matt's not going to want anymore days off from school...he's probably already wondering what's going to happen to him during February vacation! Jordan better start being a little nicer to Matt!
Please keep Jordan in your prayers for a uncomplicated surgery and recovery as well as all those that continue to battle cancer everyday! Thanks for checking in.
Love,
Karen
Tuesday, January 2, 2007 11:27 AM CST
Happy New Year. Wishing you all a year filled with good health, peace and happiness.
Thanks for all of your support and kindness towards our family. It is truly appreciated.
Love,
Bob, Karen, Jordan, Matt, Zachary and Emily
Thursday, December 28, 2006 7:08 PM CST
Hi everyone,
Hope you all had a wonderful Christmas. Christmas eve was a wild and fun night as you may have gathered from our favorite comic/attorney's version of the evening in his guestbook entry (thank you John...always entertaining!) With 10 immediate cousins(8 of them under age 9) running around, how could it be anything else? Christmas day began with presents, then 9:30am mass, followed by a day at Nanny and Poppy's with the Marquis side of the family. We had 11 kids celebrating at Nanny's, but it actually ended up being a very relaxing, mellow day with lots of good food.
Our celebrating continued on yesterday for Jordan's 16th birthday. We felt that we should try to make it extra special due to everything he's been through over the last three years, especially during this past summer. It was very hard, but we kept the plans a secret from Jordan...at least we think we did! Anyway....we are very lucky that Jordan's Uncle JP works at the Mohegan Sun Casino and was able to arrange a memorable trip for Jordan and his friends. (Good idea, Denise!) Yesterday morning at 11am a bus pulled up at our house and Bob and I along with 14 (FOURTEEN!)boys boarded the bus to start our day. This was a surprise for all the guys. Jordan was looking at us like we were nuts. (I thought JP was sending a small shuttle type of bus....not a coach bus...if I knew that, I would've sold off the extra seats to family, friends and neighbors so I had money to gamble with ;-) ) The kids were thrilled to have an entire bus to themselves though! We got to the Mohegan Sun a little after noon....JP was right there to greet us with his assistant, Juan. They escorted the group to Lucky's for a private pizza party where our other chaperone, Auntie Amy, (my sister and JP's wife) met us with Max and Julia. After that we let the kids loose in the arcade for about an hour as we guarded the exit for any potential wanderers. We planned the trip for midweek/midday so that it wouldn't be crowded and that worked out pretty well. At 3pm we rounded up the kids and got back on the bus for the ride home. They watched DVD's of Travis Pastrana there and back and snacked on junk. I think the bus was their favorite part, but they all seemed to enjoy the whole day.
THANKS JP FOR MAKING JORDAN'S BIRTHDAY EXTRA SPECIAL and thanks Tammy for watching Emily and Zach for us!!!
Love,
Karen
Wednesday, December 27, 2006 6:59 PM CST
HAPPY 16th BIRTHDAY JORDAN!!! I'll write about our adventure tomorrow....
Friday, December 22, 2006 11:37 AM CST
Jordan had a visit in NY yesterday with Dr Prockop. Everything went well and she's very happy with how well his immune system is healing. She said Matt's Tcells that he donated last month are really multiplying and that will help Jordan fight against infections. They said that he may soon be able to return to school on a part time basis, but we'll see.....I'm not very thrilled with the thought of him being surrounded by all those sniffling, hacking kids during cold and flu season while his immune system is still recovering. He had a dose of Pentamadine to help prevent pneumonia and he doesn't have to be seen again until January 11th. At that time he will be having a pre-op visit with Dr LaQuaglia and a check up with the bone marrow team. Hopefully everything will remain status quo until then and we can have a nice Christmas and New Years.
More importantly, if you haven't already guessed from Grandma Dot's entries...Jordan is turning 16 on December 27th. He is really looking forward to this and we've planned a fun day for him and his friends. It's not really easy to think of something fun for teenage boys to do in the middle of the winter (that's not considered lame), but my friend Denise came up with a great idea. Jordan doesn't know what it is yet, but I'm pretty sure they'll all have a good time.
Please continue to pray for those who battle this illness and for those families who have lost a loved one this year. We wish you all a very, merry Christmas filled with peace and joy.
Love,
The Marquis Family
Bob, Karen, Jordan, Matthew, Zachary and Emily
Wednesday, December 13, 2006 8:46 PM CST
Hi everyone,
Dr Prockop called from NY to let us know that Jordan's CT scan showed his lymph nodes have decreased in size which is great news. She has changed his Rituxamab from weekly doses to monthly which is nice, but last week they added IVIG to our routine which is another IV med that he will get at CCMC which takes about 4 hours to infuse. So between the IV Pentamadine to prevent pneumonia, the monthly Rituxamab for the EBV and IVIG (a routine med they give post transplant) we'll still be making alot of trips to the hospitals, but not quite as many so that's a step in the right direction!
The families on the DSRCT website have learned some sad news today. Marlena from Virginia has just found out that she has relapsed after being in remission for 6 months. This wonderful woman has been a constant source of humor and support even as she herself has battled this cancer. We ask that you keep Marlena and her loved ones in your prayers.
Love,
Karen
Friday, December 8, 2006 7:45 PM CST
Sorry for the delay in updating. Bob was diagnosed with Shingles last week so we've spent ALOT of time talking with the doctors in NY and our nurse practitioner, Emily, in Hartford trying to figure out a plan for Jordan to still get his scheduled CT done in NY and next dose of Rituxamab. We are very lucky that Bob has a mild case isolated on one side of his belly without pain. Because this is a covered area, the chance of Jordan coming down with chicken pox is pretty slim, but since we know how Jordan enjoys "beating the odds" we won't breathe a sigh of relief until we hit day 21.
So the plan we settled on was for Bob to bring Jordan to NY yesterday for his CT scan. The doctors were adamant that it be done so they could compare it to last month's scan. I couldn't bring him because Jordan can't go on a train yet and I don't drive in NYC.(what a wimp, huh??!!) Bob was allowed to go to the Urgent Care Center's isolation room with Jordan for his visit with the team and then for his CT scan Bob had to wait outside. Amazingly enough this visit went very smoothly which is not usually the case down in the UCC (think back to our visits there this summer) After his scan, the doctors (finally) agreed with us that he should get his IV Rituxamab the next day in Hartford instead of NY because I could take him there myself and stay with him and it would prevent Bob and Jordan from needing to stay at Ronald McDonald for the night. So this morning I took him to CCMC for his med and we ended up being there for 8 hours, but it was nice getting a chance to see our old friends from the Children's hospital and catching up with Lucy and Deena. They said they heard from Dr Gillan on Tuesday and she sounds good, but tired. Supposedly she's scheduled to be flying a black hawk helicopter on this tour so please say a prayer for Dr Gillan's safety.
We're hoping that's it for excitement around here for awhile. The holidays are stressful enough without little things like the Epstein Barr Virus and an outbreak of Shingles popping up....jeez!
Please pray for a clear scan for Jordan and a few people on the DSRCT website could use some extra prayers as well including Marlena, Vicki, Callie, Raymond, Nate, Josh and Ryan.
Love,
Karen
Wednesday, November 29, 2006 8:50 AM CST
Hope everyone had a great Thanksgiving. We had a nice time at my sister's house...lots of crazy kids running around and lots of good food of course! (Hey, Patty R. ...we had the same problem...leftovers, but no more turkey, so we made a turkey on Saturday too! :-) ) The only downside of the holiday weekend was that my sister's family came down with the stomach bug on Friday after we had been with them on Thanksgiving, so we spent the weekend watching and waiting for Jordan to get sick, but he did not. Wheww!!
Jordan's visit in NY yesterday was relatively uneventful. They were at Sloan Kettering by 8am and home by 6pm...not bad. His lungs sounded wheezy again so they gave him a nebulizer treatment before his IV Rituxamab. The doctor has scheduled him for a follow up CT scan next Thursday so that they can compare it to the previous scans. Hopefully, the results will show that his lymph nodes are no longer swollen and he can be done with this med and weekly trips to NY.... maybe we can go back to every two week visits again.
Love,
Karen
Wednesday, November 22, 2006 7:50 AM CST
******************post transplant day#150******************
HAPPY THANKSGIVING EVERYONE!!! It is my favorite holiday of the year because the focus is what's most important to us....family, friends and lots of good food!
Jordan had his 4th dose of Rituxamab yesterday in NY. The nurses were able to run it in over 6 hours this time because he was not having any side effects. They saw Dr Kernan of the bone marrow team and she said Jordan is responding amazingly well to the treatment. The latest blood tests show that the virus is gone. The plan at this point is to have the remaining 2 doses in NY with a CT scan scheduled for the same time as the last dose. They said yesterday that Jordan's surgery has been put on hold at the moment due to everything that's been going on for the last 3 weeks.
At this time of year we tend to reflect on all the things we have to be thankful for.....this year even more so than others. We never could have gotten through Jordan's transplant and recovery if it wasn't for our families and friends. We are so thankful to you all for everything you did to make this time go as smoothly as possible especially for the kids. It was so important to us to keep things as normal as possible for Matthew, Zachary and Emily and I think we all succeeded. Thank you for the donations, dinners for the family, visits in NY, gift cards, adventures to Lake Compounce and camping for the kids, rides to and from the train stations, rides to and from NY, babysitting, the blessed rosary beads from Lourdes and prayers from around the world, messages of support on the phone as well as the caringbridge, the overwhelming "welcome home" ....the list goes on and on. And a big thank you to the amazing staff at MSKCC and CCMC for taking such great care of Jordan. Thank you from the bottom of our hearts! HAPPY THANKSGIVING EVERYONE!
Tuesday, November 14, 2006 9:39 AM CST
Jordan and I were able to sneak out of the city a day early because he tolerated his med again without any problems. They were able to run it in over 8 hours which is normal and he did great. Our nurse yesterday said alot of kids have a reaction to the first dose and then they do fine with the remaining doses. It's nice to be home, but they are keeping the leash on Jordan and having him go back to NY for a check up on Friday and then his 4th dose of Rituxamab on Tuesday. At least they let us combine our already scheduled Mon and Wed visit into just one on Tuesday. Hello!!!! Thanksgiving is Thursday! We do not want to be anywhere near NY on the day before Thanksgiving IF we don't have to be, right? Dr Boulad (BMT in NY) ALMOST let us have his check up on Friday in Hartford, but because our gang we normally see won't be there (Dr Gillan has left for Iraq and Emily, our nurse practioner, is away on a conference) he said we need to come back to NY....understandable this time I'll have to admit after the week we've just had! So we'll take the Friday-Tuesday schedule and be happy with that.
Jordan and Matt are feeling pretty good. Jordan is still a little sore, but less and less everyday.
Thanks to everyone for checking in on him and leaving messages and thanks again to everyone who helped out over the weekend.
Love,
Karen
Sunday, November 12, 2006 4:13 PM CST
Hi everyone,
Well, we've had a busy weekend in NY. Jordan's doctors were not happy that the lymph node in his neck felt bigger on Thursday than it did the previous week, so they decided to biopsy it. They also told us that because the infection seemed to be getting worse instead of better with the Rituxamab, they wanted Matthew in NY to donate blood again so they could take the Tcells out to give to Jordan. The Tcells from Matt, combined with the IV med should fight the infection completely. On Friday, Jordan had the biopsy and it did confirm the dx of EBV, which was a good thing. Matt and I took the train in on Friday to join Bob and Jordan in NY and he donated one unit of blood. He got a little pale, sweaty and light headed on us, but after a few minutes he was much better. By 5:30 that night, the doctors had worked their magic on Matt's blood and they were infusing the 10cc of Tcells into Jordan. So far, so good..... Jordan is feeling pretty sore from his surgery. Not only did they take the lymph node from his neck, but they also took bone marrow from each hip. The best part of being in the hospital was that we got to hang around with all of our favorite people from this summer. Liz and Rebecca, our favorite nurses, Rose and Ron, great nurse's aides, Heidi... amazing nurse practitioner and our pal Rich was waiting for us at the Ronald McDonald House.
So anyway, just wanted to give you a quick update of what's been going on since Thursday. Bob and Matthew just left to go home. Jordan will receive his third dose of Rituxamab tomorrow, probably over 8 - 10 hours, so I don't think we'll be done in time to go home to Connecticut tomorrow, so the plan is for us to head home on Tuesday at this point. Jordan will need three more doses of this med, one week apart, so we are hoping that NY will let us get it done in Hartford. It looks like that will be the case....fingers are crossed.
Gotta run and find Jordan some hot tea for his stomach ache. Thanks for everything, especially our families for jumping in to take care of the kids, Marie for taking care of Charlie, Dad for driving us to the train station and Denise and Robin for coming to see us the night before we left! We couldn't do this without all of you!
Love,
Karen
Tuesday, November 7, 2006 6:58 PM CST
Just a quick update on my 2 patients for the evening. Jordan is walking the proverbial tightrope right now. He has been afebrile since about 11pm last night, but Dr Prockop said today that if he has one more fever he has to return to NY for observation and possible admission. They are going to be more conservative with him because he is positive for the EBV (Epstein Barr Virus), his lymphnodes are swollen and he has had a fever so they are refusing to let him be treated in Hartford at this point. The plan is to go to NY for another dose of the Rituxamab on Thursday-Friday and then again on Monday-Tuesday along with a CT scan to see if there is a decrease in the swelling of the lymph nodes. If all is well, they will let us have the remaining 3 doses in Hartford. If not, they are considering doing a Tcell transplant to help him fight the virus. Let's all pray that it doesn't get to that point and that the medicine is working, his scans show an improvement and he stays fever-free!
Matthew had his surgery today and is handling it like a pro. He had two teeth pulled including one growing on the top of his palate (weird) and we were home within 2 hours. He was pretty groggy for awhile and he did get sick once after we were home, but soon after that he was able to eat all the popsicles, pudding and ice cream he wanted. Good job Matt!
Love,
Karen
Monday, November 6, 2006 7:24 PM CST
Hi everyone,
Bob and Jordan arrived in NY on Saturday by 8am and the scans were done by 12 noon. The scans showed some swollen lymph nodes which is exactly what the doctors expected. The med (Rituxamab) they use to treat the EVB is almost like a chemo drug and it tends to have alot of side effects so they like to start it in the morning and run it slowly when the doctors tend to be in the hospital. Unfortunately this meant that Bob and Jordan had to sit around and wait in his hospital room for almost 24 hours before the med was started. Very disappointing! It's like playing that "hurry up, get here and wait game."
Sunday morning at 9am the med was started and Jordan started having a reaction within the 1st hour which is normal....vomitting, chills, freezing, headache....so they stopped the infusion, gave him some Benadryl, Ativan and Vistaril and then restarted the med at half the previous rate. He slept through most of it after that, but because it was running so slowly it didn't finish until almost 11 o'clock at night. They were getting ready to go home around midnight....so annoying after wasting the whole previous day doing nothing....but then Jordan spiked a fever and they had to stay another night. Two nights parking in NY...not cheap, plus this meant Bob had to miss work on Monday...normally, not a big deal, but after sitting around on Saturday with nothing being done and knowing he had already taken Tuesday off because Matt's having oral surgery...not a good thing!
Anyway, they got home around 1pm this afternoon and Jordan looks pale and tired. He spiked a temp again at about 6:30pm and we've already talked to MSKCC once, so we're just waiting for another hour or so to recheck it and call them with an update. Hopefully they let him sleep through the night since the fever is most likely due to the medicine, but they make you call with anything over 100.5. I hope they don't make us go for blood cultures.
Jordan will need this med again on Thursday, so that's the next battle. We want to have it done in Hartford and the doctors at Sloan want us back in NY. Three trips to NY in seven days is a bit much when the treatment can be given here at his home hospital. We'll see what happens tomorrow when we talk to them about it.
That's about it for now.
Love,
Karen
Friday, November 3, 2006 7:52 AM CST
Hello everyone,
Hope you all had a fun Halloween. The kids had a good time and with 4 of them making the rounds, I think we can open up our own candy store with the loot they collected. Jordan was a blind referree, Matt was a nurse, Zach was a pirate and Emily was a Cheetah Girl.
Bob and Jordan went to NY for a check up yesterday and everything went smoothly once they got there. Bob said the traffic was terrible and it took over 4 hours to get there when it normally takes 2 1/2. The doctors are having Jordan try a new inhaler in place of his nebulizer to see if that helps with the wheezing they hear. Besides that, all is well. The highlight of the day was finally getting to see Jordan's favorite nurse, Liz. She wasn't even working at Sloan yesterday, but she said she was tired of missing Jordan's visits to the floor and then hearing from everybody how good he looks, so knowing he was scheduled to be there yesterday, she came in to see him before heading off to work at a flu clinic. What a girl!! Surgery is still scheduled for the 27th as long as his lungs improve.
Emily and I were at the children's hospital in Hartford for her yearly ultrasound of her kidneys....(she was born with a kinked ureter and had to have surgery at 3 months old).....everything is fine with her, but while we were there we went over to oncology to say goodbye to Dr Gillan before she leaves next week. This is her second trip to Iraq and she seems very upbeat and positive. She said she plans on teaching a spinning class for the troops in her spare time, she'll be working 7 hour days and getting 1 1/2 hour lunch breaks, so she's looking at it as more of a vacation :-) compared to her schedule when she's home in the US. Amazing!
Love,
Karen
********Friday night 7:00pm*********
Woops....did I say everything was fine? I should know better than to put that in writing! Dr Prockop (NY)called a little while ago to tell us that Jordan tested positive for EBV,the virus that causes mono. Not a good developement, but not terrible at this point either. Sooo....the plan is to head back to NY tomorrow morning to repeat the scans he had in August to make sure they are not missing any inflammed lymph nodes and to then treat him with IV medication. She said this med is usually all that is needed in over 70 percent of the cases. The strange things is that when they thought he had this virus in August due to the swollen lymph nodes in his neck and an abnormally high number of B-cells...he didn't. And now, when his nodes in his neck are no longer palpable and his B-cells are at a normal level, he comes back positive. Weird! Please say a prayer that this med will take care of the virus and Jordan's recovery will not get set too far back. He's been doing so well. We'll let you know more when we know more. If nothing shows on the scans and nothing new develops in the next 2 days, they're saying he will only have to stay in the hospital for 24-36 hours. (I told her Matt has surgery on Tuesday and she even tried to see if Hartford could do this admission for us, but for some reason they couldn't :-( ) Hopefully everything will fall into place. Keep your fingers crossed!
Love,
Karen
Oh yeah....they've changed his surgery date from Nov 27th to Dec 18th. One day at a time...
Tuesday, October 24, 2006 2:40 PM CDT
Hello everyone,
I think today is post transplant day # 123. I guess there's something to be said in my having to stop and think about what day it is. Before I used to know off the top of my head.....now life doesn't seem to be revolving around Jordan's bone marrow transplant quite as much as before.....ALOT....but not every second :-).
Yesterday we spoke with the doctors in NY and they said Jordan's next surgery was scheduled for November 6th. This was not a good plan because Matt is already scheduled to have a few teeth pulled on November 7th. What if Jordan's surgery turns out to be more involved than they think and he needs to stay in the hospital? Back to back surgeries....not a good idea! So it was good to hear that date was changed. Dr Prockop also said that they plan on taking out Jordan's port during the surgery if his immune function reaches a certain level before the surgery. Right now his immune level is at about 25 percent which they tell us is normal at this point. Jordan hoped it would be higher so he could ride his dirt bike, but that is not to be just yet. Like I said on Nate's site, I read somewhere that when you're in the middle of cancer treatment it's as if you just pushed the "pause" button on your life. Jordan is chomping at the bit to push the "play" button. He'll get there...one day at a time.
Thanks for checking in on Jordan. Take a minute to drop us a line if you get a chance and please say an extra prayer for Nate, Steve, Mikey and Callie this week. Also, Dr Gillan is being sent to Iraq for a 2nd tour of duty...please keep her in your prayers as well.
Love,
Karen
PS I'm glad to see our very own comedienne is back from her honeymoon to once again entertain us with her wit! I'd have to say that between John and Lynn's entries on the bridge, we have the most entertaining guest book of all!
Monday, October 16, 2006 7:55 AM CDT
Hello all,
We just had a busy, but fun weekend....first we had a birthday party for Emily and our niece Alyssa. (They share the same birthday, 2 years apart) Lot's of fun with Tinkerbell attending the party and entertaining the kids. Jordan and Matt were just thrilled as you can imagine! On Sunday we went to the "20th birthday party for Make-a-Wish of Connecticut." It was a gorgeous fall day and the kids had a good time....lots of food and booths set up for the kids to enjoy....face painting, Tshirt making, pumpkin decorating, etc. We were even going to have a chance to go for a lift in a hot air balloon, but when it tipped over sideways because of the wind, we decided to skip that part! We ran into our volunteer wish granter, Tracy, who came to our house the summer of 2005 to bring us the news of Jordan's make-a-wish trip to Gary Bailey's Motocross camp. We still talk about it on a weekly basis. Thanks again Make-a-Wish and Gary Bailey's gang for an amazing wish come true!!
Jordan's off to NY for another visit at Sloan on Thursday. We'll keep you posted.
Love,
Karen
Tuesday, October 10, 2006 3:04 PM CDT
Today is a sad day for the DSRCT families. Keegan Ott passed away last night after battling this cancer for over 2 1/2 years. Although we know this young fighter is at peace now and no longer in pain, it is still devestating to know another family is experiencing a heart breaking loss. Please keep Keegan's family in your prayers.
Love,
Karen
Friday, October 6, 2006 8:31 AM CDT
****************post transplant day#105********************
Hello everyone,
OK....I've been lashed at a few times for not updating so get ready...here you go :-)
Jordan continues to plug along at a steady pace. He had a visit yesterday at Sloan Kettering and the doctors are once again happy with his progress. We should know next week how well his immune system is returning. The doctors are still concerned about some crackles they hear in the bases of his lungs so he will be scheduled to see a pulmonary specialist during his next visit. Until then, we carry on with the meds he has been taking and add some chest PT to our daily routine. I've learned to access his port which I don't really like doing. It's not difficult, but it just gives me the shivers holding onto the port under his skin and sticking him. It doesn't really bother Jordan so that's all that matters:-)
Jordan had developed a hydrocele in the spring and the doctors kept an eye on it throughout his hospitalization this summer. We learned yesterday that it was probably caused by the initial surgery he had in Feb '04 due to all of the work that had to be done in that area to remove the tumors. Because this showed up right before transplant they were unable to do anything about it, but the team feels he will be able to tolerate surgery next month. It will be done as an outpatient and I'm sure they will do a spinal tap and lumbar puncture while he's under to assess his Leukemia status as well.
Very exciting.....Jordan and Bob met another one of the kids from the DSRCT site yesterday. His name is Josh and he had his big surgery (10 hours) with Dr LaQuaglia last week. He had just been moved from the Pediatric Observation Unit to the regular unit so they were able to stop in to say hello. He's doing great and should be able to go home in a few days. I know that when we were at that point in Jordan's treatment I wished we could've met another person with the same cancer to give us some encouragement and hope and that's what I'm hoping we did for them yesterday.
On a lighter note, as you know, the doctors had said that once Jordan had passed his "day 100" mark we could get a dog. During his last visit, Jordan saw a doctor he's only seen a few times, but she told him since he's reached that milestone in his recovery that it would be fine to get a puppy as long as we used common sense. (I guess it all depends on which doctor you catch on what day!) Soon after, my sister Amy just happened to meet a lovely couple who breeds Brittany Spaniels and one thing led to another and we now have an adorable little guy named Charlie. He's only been here for a few days but he's already thinking he's the king of the house. Bob and the kids are thrilled...I'll leave it at that ;-).
Reading the postings on the DSRCT site this week has been an emotional rollercoaster. Some people received good news, others did not and some are nearing the end of their battles with this monster. Please keep Keegan, Steven, Nate, Raymond, Callie, Mikey and their families in your prayers as well as the people who work so hard to encourage and support the DSRCT families.
I hope everyone is able to enjoy the gorgeous weather and foliage over this Columbus day weekend. I know we will!
Love,
Karen
Thursday, September 28, 2006 6:18 AM CDT
****************post transplant day#97********************
Day 100 is just around the corner. He's almost at the half way mark of his recovery and feeling better everyday. For most transplant patients, day 100 is "the magic number day" everyone strives to reach to signify the end of the recovery phase... for the most part. Because Jordan had a T-cell depleted transplant, his recovery time is doubled. The doctors chose this type of transplant to decrease graft-vs-host disease and the need for strong medicines to treat it. They felt because he had been treated for cancer previously and exposed to heavy duty chemo and radiation, they wanted to limit the need for harsh meds during transplant as much as possible to prevent further organ damage.
Jordan saw Dr Gillan in Hartford yesterday and everything was fine. His only complaint at this point is some stomach upset from a new med he is on. Back to New York next Thursday. Sometimes we feel like ping pong balls going between the two hospitals so frequently, but it's OK...at least we're home.
Special prayers are needed for some of our friends on the DSRCT website. Please keep Keegan, Nate, Steve and their families in your prayers. Thank you.
Love,
Karen
Saturday, September 23, 2006 6:55 AM CDT
*******************post transplant day #92*****************
Jordan had another good visit with his bone marrow team in NY again yesterday. His platellets are up to 115, his weight was 115lbs., (115 must've been his lucky number yesterday) and his chest CT and pulmonary function tests both showed improvement from the previous ones. The doctor still heard crackles in one small area, but that is so much better than when he was in the hospital. Best of all they said he could eat in restaraunts every once in awhile if he only orders hot foods...no salads, nothing with deli meat, no fresh fruit except those with thick skin, no buffets,etc. but that's OK....we can do that! We were hoping to go to Vermont in October for a little getaway with the kids and I was a worried about how we would feed Jordan if he couldn't eat in a restaurant. I had visions of tossing a peanut butter sandwich and a banana at him in the car while the rest of us went into Crackerbarrel ....not good!! Now he can join us. So besides the restaurant news, they did say that, yes, he could go away for a weekend and they also said it was fine to get a dog at this point as long as it's not a puppy. I'm not quite ready for a new dog, but I'm in the minority in this house! So some restrictions are being lifted, but alot are still in place. He can't be in crowds, he has to wear his mask more than he likes especially with cold and flu season right around the corner and the thing that bothers him the most is that he can't ride his dirtbike. Even though his platellets are fine, his immune system is not and they don't want him around any freshly dug up dirt or soil. The doctors are estimating that his immune system will be able to tolerate that kind of exposure sometime around his 200th day mark which will be in January. One step at a time!
He started working with one of his tutors last week and it was great to see him using his brain again. The tutor was impressed at how well he was able to get back into the swing of things after being out of school for the last 5 months minus the few times he did meet with his tutor at Sloan. I told her that the Dilaudid, Morphine, Benadryl, etc that he was on during transplant made it a little hard to grasp any new information while in the hospital! ( I'm not even sure how he was able to stand up and walk on all that stuff...I would've been passed out for days if I took half of what he was on. ) Anyway, he should be meeting with his Biology and Math tutors this week as well and they both sound really nice.
Have a good weekend and thanks for checking in on Jordan.
Love,
Karen
Tuesday, September 12, 2006 8:49 AM CDT
*******************post transplant day #81*****************
Bob and Jordan went to NYC yesterday for a visit with the bone marrow team and for a chest CT and pulmonary function tests. We don't have results yet from the tests, but they said his lungs sound much better and his lymph nodes are less swollen. They also said his blood counts looked great, platellets were 85 and his immune system is starting to recover. The last bit of good news was that they are letting Jordan go to bimonthly visits in NY now so we'll do a visit in Hartford once a week and the next week will be in NY. Such great news!! I needed that yesterday. I was having a blue day probably because I couldn't stop watching all of the shows about 9/11. I'm sure knowing that Bob and Jordan would be in the city on the 5th anniversary wasn't adding cheer to my day either so it was nice to hear some positive news.
Tutoring starts next week for Jordan. His biology teacher is coming Monday night at 6:30. I'm not quite sure how this is going to work out since the three other kids will be in the house at that time, but we'll give it a whirl. Three years ago when he was being tutored his sessions were held during the day time which worked out perfectly. I don't know about you, but 6:30pm in our house is normally a little crazy because it's when we're having dinner and starting homework. We'll see how it goes.
Love,
Karen
Thursday, September 7, 2006 2:43 PM CDT
**********************post transplant day #76**************
Hello everyone,
The first week of school has been keeping us busy. Jordan is a little bored I think, being home while everyone else is at school. Hopefully we'll hear from his guidance counselor soon about when his tutoring will start. He had a visit in Hartford at CCMC at the beginning of the week and they said he looks great. He didn't see Dr Gillan...I'm not sure where she was...but we met a new attending and he was very entertaining. He had done his training at Dana Farber so he jumped right on Dr Gillan's bandwagon about slamming Sloan Kettering any chance he got and I just had to give it right back to him. (It was very fun.) HELLO!!! They saved his life twice!! I understand a doctor is always more comfortable referring to a facility they deal with all the time versus one they hardly ever do, but I'd have to guess that in general, everybody's heard of Memorial Sloan Kettering and both facilities are probably equally amazing. Since the leading expert on treating DSRCT was Dr Kushner and he works at MSK with Dr LaQuaglia, we chose them. So when it came to choosing a place for treatment this time around for his bone marrow transplant, it made complete sense to us to continue with the doctors at Sloan since they already know Jordan and they do as many, if not more BMTs a year. Could you imagine if we had to go to NY for follow up for the DSRCT and to Boston for follow up for the Leukemia...aaahhhhhhhh!! It just didn't make sense. There....I feel better. Sorry about the ranting.
Anyway....Jordan continues to feel well and since being home he has gained back 8 of the 20lbs he lost. He is not being seen in NY this week because he has a chest CT and pulmonary function test scheduled there on Monday so they didn't want him to have to come in on Friday for a visit and then return on Monday for his tests so they'll do everything on Monday. Maybe we're at the point where they'll continue to let us see Hartford one week and then NY the following week. That would be nice.
Love,
Karen
Friday, September 1, 2006 10:08 AM CDT
**************** POST TRANSPLANT DAY # 70******************
Can you believe it's been 10 weeks since Jordan's transplant? It seems like just yesterday. He still has a few aches and pains, but generally he feels well. His counts have remained high enough to not warrant any transfusions over the last few weeks so that's great. The doctors say his lungs are healing, but he has developed a wheeze which may mean that he has a touch of asthma so they want to add something new to see if that helps. We have our own little clinic set up here with nebulizers, IV poles and medicine galore so what's one more thing, right? We have a routine going now so really it's not too bad. I look at it as a way to keep my hand in nursing.
The kids started school yesterday so that was very exciting. Matt is in 7th, Zachary is in 2nd and Emily is in afternoon kindergarten. We're hoping for a nice, boring, uneventful school year. Do you think that's possible? One can wish. Jordan's guidance counselor is working on setting him up with tutors since he won't be able to return to school until sometime in January, but we haven't heard when that will be starting. Jordan doesn't seem to be in any rush, but now that he's feeling better I think it will be great for him to get back into the swing of things.
Thanks for checking in on Jordan and for all of your prayers and good wishes. Several people on the www.dsrct.com website are needing extra prayers at this time so please add Keegan, Steven, Ryan and Marlena to your prayers. Thank you.
Love,
Karen
Saturday, August 26, 2006 8:34 AM CDT
Hello everyone,
I have to say it feels great to be home! We are slowly settling back in. Jordan is thrilled to be able to see his friends. The fact that he has zero immunity to anything doesn't seem to be a concern of his though. I think it's slowly sinking in after hearing it about 10 times a day at varying decibels. He is being good about wearing his mask and using Purell, but that only protects against so much. It's scary being back in the real world! I picture germs everywhere that can send his little butt right back into the hospital. He thinks we're crazy and that we "can't keep him in a bubble" .... and he "is almost 16!".....blah, blah, blah! Thank God one of the BMT doctors at MSK brought this discussion up on Thursday and reinforced what we had been telling him. Maybe he'll listen to someone that's not one of his parents. His visits in Hartford and New York this week went pretty well. He is still maintaining his Hgb/hct and platellets on his own, so no transfusions have been needed for over 2 weeks. The doctors are keeping an eye on his swollen lymph nodes which seem to be improving. Bob and Jordan left for NY at 5 am and were back by noon which translates to 5 hours in the car for a 20 minute doctor's appt., but that's OK! At least we're home.
Love,
Karen
Friday, August 18, 2006 7:53 PM CDT
**********************posttransplant day #56***************
Just wanted to let you know you know....WE'RE HOME!!!!!! Jordan had a visit with Dr Prockop today and she gave him the green light to leave New York after 122 days. YIPPPEE!!! Jordan will see DR Gillan at CCMC in Hartford on Tuesday and then we have to go back to NY on Thursday to see the bone marrow team, but that's OK....at least we're home in between! So we had just enough room in the van for Jordan to squeeze into his seat. It didn't seem like we had that much stuff left until we had to pack it all up. It took us over 3 hours to get here due to ridiculous traffic, I was crabby the whole way home because I felt carsick within the first 15 minutes of getting into the van, but all of that nonsense was forgotten as we took the exit for home and saw a WELCOME HOME JORDAN AND KAREN sign. The closer we got to our house, the more signs we saw....there must have been over 20 colorful signs with welcome messages to keep us busy as we drove the last 20 minutes of our journey. And as we turned onto our street, we saw that it was lined with what seemed to be hundreds of balloons and friends and family from one end to the other clapping and cheering. Jordan was speechless and I was blubbering like a fool! There was a big welcome sign across the front of the house and I think someone said a reporter from the Bristol Press was there.....jeez, you guys sure know how to make people feel special! What a welcome home!! Thanks everyone...we love you too!!
Love,
Bob, Karen, Jordan, Matthew, Zachary and Emily
Thursday, August 17, 2006 2:29 PM CDT
*******************posttransplant day #55*****************
Good news on the PET scan.....negative for DSRCT!! The only thing that showed up was some inflammation of the lymph nodes, but they are attributing that to the two month battle with the paraflu virus. They will keep an eye on that, but they are expecting the nodes to decrease gradually now that his paraflu is negative. We have another visit with the bone marrow transplant team tomorrow and we're hoping to hear the official words, "GET OUT OF HERE...GO HOME!" Jordan has been getting platellet transfusions at least twice a week for the past 8 weeks and Tuesday was the first time he didn't need one which show's his body is finally starting to produce them on it's own. His new port is working well and he is feeling much, much better. The incision is still a little sore, but he is not taking any more pain medicine at this point and he's been sleeping great.
In preparation for our return home, Bob and his helpers have been cleaning, cleaning, cleaning and we can't wait to go home and see what a great job they did. I heard that Nanny cleaned under Jordan's bed....now that is a scary thought! Lord only knows what she found under there!
Thanks everyone who helped Bob....Nanny, Poppy, Carol, Kat, and Amy. Thanks Gram for keeping Emily and Matthew last weekend.
Enjoy the rest of your summer and we'll let you know what the doctors' say. (KEEP EVERYTHING CROSSED!)
Love,
Karen
Sunday, August 13, 2006 4:00 PM CDT
*********************posttransplant day #51****************
Hello everyone,
Sorry for not updating sooner. The RMH doesn't have the computer room open as much as we'd like. Anyway.....Jordan's surgery went smoothly on Wednesday and it only took about an hour, but he's been very sore ever since. The surgeon placed the port in the same area his temporary line was to minimize scarring, but they said sometimes using the same area can increase the postop pain. Jordan did say he is starting to feel better and he's only taken Dilaudid once today, so he is definitely heading in the right direction. Friday afternoon he had his PET scan for the DSRCT. (CT scan last week came back negative, but Dr Kushner always likes to do both a CT and PET scan.) We should have the results from the PET as well as the results from the bone marrow aspirate they did on Wednesday during his surgery by midweek.
Last night, we took a long walk in the city and had fun showing Bob and Zachary places we had seen on the bus tour. We stopped at St Patrick's Cathedral which I've seen several times before, but have never gone in....it's just beatiful! We said a prayer for everyone on the DSRCT website and lit a candle. We saw the Disney store, the Plaza Hotel, FAO Shwartz, Rockefeller Center, the Nintendo store, etc. We only let Jordan go into the Nintendo store and it was only because it wasn't crowded and it was only for 5 minutes, other than that we behaved ourselves. Today we walked through Central Park and did some people watching. It was a beautiful day for it.
Jordan's next checkup will be either on Monday or Tuesday, depending on how he is feeling and hopefully we will have a clearer idea as to when we can head home. We'll let you know when we know. Thanks to everyone who's been sending their sympathies regarding Jordan's dog, Sadie. It means alot.
Love,
Karen
Tuesday, August 8, 2006 7:41 PM CDT
***************post transplant day #46*********************
Just a quick note because they are going to close the computer room in 10 minutes. Jordan's paraflu came back NEGATIVE!!! So exciting after all these weeks. We went in to the PDH for his usual biweekly check up and bloodwork and they surprised us by telling us "oh by the way, he's having his surgery tomorrow to put his mediport in" This is good news....one more step in the right direction. I'm glad we're still at Ronald because if they sprang that news on me and I wasn't planning on being in the city tomorrow I would've been a little crabby! When I told them this is the first I've heard of this, they said "oh in this place you have to learn to roll with the punches"....don't we know that! His lungs sound much better, but are still a little wheezy, so if they don't sound good in the morning, they will postpone the procedure.
Jordan and I just had our first exciting outing since he's been an outpatient. Because he can't be in crowds or out in the mid day sun, we're pretty limited to what we can do and where we can go. Tonight the RMH had a double decker tour bus reserved for a tour of the city. We sat up on the top deck so he wasn't in an enclosed space with people and he wore his mask of course. (plus I made him Purell at least 5 times) It was very fun to see the city and we couldn't of had better weather. Yay........a positive update on the bridge from the cranky crew in NY!!!
Love,
Karen and Jordan
Saturday, August 5, 2006 1:53 PM CDT
*******************post transplant day#43*****************
Hi everyone,
We received some good news on Friday....Jordan's lungs are improving! His CT scan looked much better than the last and the scan for DSRCT was negative as well. He still has a PET scan scheduled for next Friday so keep those prayers coming....hopefully that will be negative as well and we won't have to worry about the DSRCT for another 3-4 months. Now....I apparently gave praise to the Urgent Care Center a little too soon! We were there again for 7 hours! Better than 9 I guess, right? We saw his nurse practitioner, Catherine, for a check up after being there for about an hour and then after that we just waited around for the platellets to get there and then infuse. I will admit the platellets do run a little slowly with the PICC line compared to the central line, but it only took an hour....the rest of the time was just spent waiting around. It's completely ridiculous! If his paraflu test comes back negative tomorrow, we can go back to being seen in the Pediatric Day Hospital which I will NEVER complain about again.
The good news we received on Friday was much needed because we had a very sad day on Thursday after learning that Jordan's dog, Sadie, had to be put to sleep. One of the things that got Jordan through these past 4 months was knowing he would soon be back home with her. They've been together since Jordan was 2 years old. He even kept a picture of her taped to his hospital bed. Bob had been saying that she wasn't acting herself and that she needed to be carried in and out of the house because she was having trouble walking. He took her to the vet on Thursday and learned that there was nothing they could do for her. It just completely broke my heart, for the whole family, but especially Jordan. This is not what he needed at this time. How much more is this poor kid supposed to take?? :-( Jordan seems a little better today, but the last couple of days were very emotional. Thanks Marie for the card and poem.
On a brighter note, the gang is all here in NY for the first time in I don't remember how long. Matt, Zach and Emily are all very tan, but I suppose everybody is compared to me and Jordan.:-) It's been a challenge getting everyone to settle into our one room at the RMH, but so far so good. The boys have been busy watching the XGAMES and were happy to be altogether when they saw Travis Pastrana make history by doing a double back flip....he's nuts but of course the kids loved it!
Have a good weekend. Keep those fingers crossed for a negative paraflu result tomorrow!
Love,
Karen
Tuesday, August 1, 2006 7:38 PM CDT
*********************post transplant day #39***************
One of Jordan's nurse practitioners called us yesterday to let us know that unfortunately he is still positive for the paraflu virus. This was a big disappointment because this last swab was originally negative, but they have to let it sit for five days for the final report and annoyingly enough...it was positive again on day 5. Not only does this push back the date for the surgery to insert his mediport, but it also means we still can't go back to the pediatric day hospital for his outpatient visits, we have to return to the Urgent Care Center. However, I must tell you that we did have our second appointment today at the UCC and we were in and out in just over 2 hours and that's after seeing two different teams, Bone Marrow Transplant and Neurology (for headaches), blood tests and then a platellet infusion. Why we were there for nine hours the other day for a visit with one team and a platellet infusion is still beyond me! I explained our prior experience to our nurse today and she was just as annoyed for us as I was. She was practically high fiving us as we left today...she was so proud to get us out so quickly....or maybe she was just happy to get rid of us! Either way, things went very smoothly today and the good news is that the doctors said Jordan's lungs sound better. He has a CT scheduled for 8am on Friday to evaluate his lungs and sinuses, but he's also due for a CT and PET to evaluate his first cancer, DSRCT, so they will scan for that as well. Please pray that his lungs and sinuses look better and that his DSRCT is still in remission.
Some more good news is that our TV should be fixed tomorrow. We've been TVless ever since we were discharged from the hospital. This is not a fun thing to have to tolerate since Jordan's activities are so limited and we are in our room alot. He is continuing to beat me daily at Scrabble and he's even talking about finishing his Romeo and Juliet homework. Now you know how bored he is! I myself am reaching the end of my rope I think....I actually got teary eyed the other day because Jordan was able to have watermelon for the first time this summer. It's time for us to go home...we've been here long enough!
Love,
Karen
Saturday, July 29, 2006 7:58 PM CDT
***********************post transplant day # 36************
Jordan is enjoying being back at the Ronald McDonald House. I think he's just happy to be O-U-T of the hospital. (not that we've been out for long) Yesterday we went back for his "quick check up" in the Urgent Care Center at 8:00 am.....and arrived back at the Ronald McDonald house after 5pm. That's right....we got up at the crack of dawn :-) on our first morning out of the hospital for our "bright and early appt. so we could get done quickly and enjoy the day" (I'm putting that in quotes because that is what we were told) and NINE hours later we were on our way home. He was seen by the team, received one unit of platellets and one IV med....that never should've taken nine hours. Jordan was fine, just lots of waiting and waiting and oh yeah...some more waiting. We ended up missing our scheduled visit with the homecare nurse and all of his meds for the morning and afternoon. Not a good way to start our new life out of the hospital. I won't bore you with the whole scenario, but it was just ridiculous! And I have to say thank you to our nurse Liz from the inpatient pediatric floor because she helped smooth out some details for me...otherwise we'd probably still be there....AAARRGHHHHHHH!! The man at the front desk at the Ronald McDonald House took one look at me when we got back and said "you look like you need a drink" That pretty much summed it up!
Oh who cares, right!!! Jordan is feeling good and we're out of the hospital so that's all that's really important.
Thanks for checking in.
Love,
Karen
Thursday, July 27, 2006 10:56 AM CDT
****************post transplant day #34********************
JORDAN HAS LEFT THE BUILDING!!!!! We have been officially discharged. I'm just running around, packing a few last things and trying to figure out if we can fit everything in the taxi. Jordan is feeling good and he's happy to be moving on to the next phase of recovery. We have an appointment tomorrow morning for a visit with Heidi APRN for a quick check up and bloodwork and then the homecare nurse will be coming out to the RMH to show me how to do some things for Jordan (IV med, dressing changes,etc) to limit the number of times we have to come over to the hospital. We don't have an exact plan as to when we'll be heading home to Connecticut. We have to take things day to day, but if all goes well and his pneumonia clears up soon, then I am guessing we'll get to come home somewhere around the 11th. We will have to return to NY for visits but we're hoping they will allow Dr Gillan in Hartford to take over some of his follow up care. (maybe if they want twice a week visits they'll let her do one and they can do one....that's manageable! We'll see.)
Alright, I've got to finish packing, but I just wanted to let you know we are leaving the hospital. Thanks to everyone at Memorial Sloan Kettering especially Liz, Rebecca, Heidi, Rose, Ron, Diane and the BMT team. You've been great, but we'd prefer not to have to visit with you again!
Love,
Karen and Jordan
Tuesday, July 25, 2006 6:51 PM CDT
**********************post transplant day #32**************
Discharge planning has begun! Things had stalled a bit because Jordan still has the paraflu virus and his CT on Monday showed that his sinuses look even worse than the last time and he has pneumonia in one of his lower lobes. Besides his constant coughing you would never know he has that going on. He has been out of bed alot during the day, drinking cans and cans of Gatorade to help boost his potassium levels, eating a little more everyday (especially bananas, cereal, rice and grilled chicken) and he has continued to be fever free. The infectious disease team came to check him out today and since Jordan remains afebrile they are not overly concerned. Their plan is to just add an oral antibiotic to his slew of meds and to discharge him with a nebulizer. Hopefully his lungs and sinuses will improve once he gets out of here and can start moving around a little more. Because his IV's have been bothering him, he is having a PICC line inserted tomorrow ( a more permanent IV ) until his lungs are healthy enough to tolerate anesthesia for his chest port placement.
I counted today....it's been 100 days since we arrived in NY back in April. We did return home a couple of times for a little break here and there, but for the most part we've been New Yorkers since April. (Amy says she can tell...I don't know what she's talking about....I feel I'm just as nice as when I left home!)
I'll let you know if the plan changes. Thanks for checking in on Jordan.
Love,Karen
Saturday, July 22, 2006 6:25 PM CDT
Hello everyone,
Woops.....I forgot to say ******post transplant day 29*****
Jordan's getting better everyday. Supposedly he will be discharged by Wednesday. He is down to one IV pump and almost all his meds are by mouth. He is feeling better and eating a little more each day. We've had lots of visitors this week, so that has been fun for us. Betsy and Stephanie came on Thursday (friends from Bristol Hospital....seemed like old times doing our two favorite things...eating and talking!), Sue and Meghan came over from Brooklyn on Friday afternoon and kept us entertained with stories about their summer and then Bob came on Friday evening as he always does, thank God, but he brought a surprise weekend guest...my sister Carol. It was so great to see everyone and it made us want to get back home even more.
Jordan's counts are going up and down and he needed 2 units of blood and platellets today which is normal as well as medicine to boost his white count. He is having a repeat CT scan on Monday to check on his lungs and sinuses. He's been sleeping better and he can't wait to get outside of this room. The finish line is almost in sight!
Thanks for checking in on Jordan and a special thanks to all of our visitors!
Love,
Karen
Wednesday, July 19, 2006 10:58 PM CDT
****************post transplant day #26*******************
Jordan is having a much better week than last. Most of his IV meds have been changed over to pills/liquids (a big step toward discharge ). He is only getting a few things IV now, so they've removed 2 of his big IV pumps from his pole. ( Now it's much easier to get him into the bathroom! ) Yesterday his chest port started hurting and the nurses have been having trouble drawing blood from it, so the doctors decided to remove it and replace it with regular IV's in his arm for now. Since he doesn't mind getting stuck for bloodwork, they are hoping he can tolerate having these peripheral lines replaced every 3-5 days until he doesn't need IV's anymore. ( a week or two )If he's having a problem, they'll insert another port, but this one will be completely under his skin. Either way is fine. He's just thrilled not to have the tube sticking out of his chest anymore.
He's drinking alot again and he's eating a little more everyday. The paraflu is still there, but they said that could linger for months. The annoying thing is that because he has the paraflu he can't go out of his room to walk the halls, so his isolation period continues. The good news is that the doctors are very happy with his progress and they said he can expect to be discharged to the Ronald McDonald House next week. The other good news is that he'll still be in the hospital on Friday so he'll be able to raid the candy cart at least one more time while he's here! :-) This is a very big deal to the kids on this floor. Every Friday night a group of at least 3 people comes around to the kid's rooms with a cart filled with tons of candy and snacks and they let the kids take AS MUCH AS THEY WANT....and let me just say we're not talking penny candy here...it's a kid's dream come true. (Usually the nurses and residents place their orders with the kids and they pick up their stash the next day.)
Jordan's job is to keep trying to gain some weight and muscle strength back. We're both getting pretty home sick so we're happy to know this seperation from family, friends and home is almost over. I'm estimating we'll be back sometime around the 2nd week of August. At that point Dr Gillan at CCMC in Hartford will resume his care and we'll come back to Memorial Sloan every month for a check up for the next 6 months. So we still have a long haul ahead of us, but hopefully the worst is behind us. (knock on wood!)
Thanks for checking in on Jordan and thank you for sending extra prayers for Greg Orgel. His tests came back...(finally)...no cancer! What a big relief for his family and for everyone who considers him such an inspiration in the battle against DSRCT. Please keep those prayers coming for others having a difficult time right now, especially Keegan and Marlena.
Love,
Karen
Saturday, July 15, 2006 2:07 PM CDT
********************post transplant day #22****************
Sorry it's been awhile since I've updated. Besides the fact that I hate typing with gloves on and having to go back over and over again to fix my spelling errors, there hasn't been much news to report. Jordan is just lounging around, growing new cells. This process is making him exhausted and yet he is still able to get out of bed occasionally and beat me at Scrabble. His fevers seem to have finally disappeared and the doctors are slowly taking away one medicine at a time. They told Jordan that if his fevers don't return and he starts eating and drinking again, they'll let him out of here. He hasn't made much progress in the eating department (he is down to 111lbs. from 125lbs.), but at least we can mention the word "food " now without him considering it a curse word! (Maybe we can spark his appetite with one of Tammy's cookies...I took it upon myself to sample one of each kind last night, just to make sure they were safe for him, and they seemed alright :)...delicious....thanks Tam!!)
We are still waiting to see if his parainfluenza virus test comes back negative so he can start making laps around the unit. The doctors told him he could start the other day, but then they remembered he had paraflu, so he couldn't do it. He's still coughing away, but it seems much drier now and he isn't as stuffy as he was....hopefully it's gone.
That's it for now....have a good weekend and please say an extra prayer for the Orgel family as they await Greg's test results. Thank you.
Love,
Karen
Monday, July 10, 2006 9:47 AM CDT
******************posttransplant day #17******************
Hello everyone,
Jordan is continuing to be his own man.....doing things his own way. Most kids feel their worst when their counts are zero. Jordan actually felt OK during that time except for the mouth sores and itching which were made bearable with medication. He drank tons of fluids and was out of bed working on his puzzle, walking around his room and trying to exercise, playing scrabble (OK...that one took a little bribing, but once he played he liked it :-) ) He had his bad days mixed in there, but I was actually amazed at how well he was doing overall. Now that his counts are coming back, it's hitting him full force. He's exhausted and hasn't wanted to get out of bed for the last 5 days. He's coughing his head off and after 2 sinus and chest CTs last week,, their thinking he has viral pneumonia. He's still positive for the paraflu virus, the N/V and D have increased, he's down to 114 lbs. and continues to have no appetite....and I thought we would be home free once those counts started coming back....ha!
Yesterday afternoon he started feeling a little better. He was able to sit up and enjoy a visit with Nanny and Poppy for awhile and after they left he took a shower to help loosen up the congestion. He felt a little lightheaded and short of breath afterwards, but once he settled back in bed with his oxygen he was OK. We were up alot last night between the coughing and the never ending beeping ( when there's a problem with any one of the 6 IV pumps, an alarm beeps and a nurse has to come in and fix the problem ) but the good news is that Jordan has allowed me to open the blinds for the first time in a week so I'm taking that as a good sign.
Thanks for checking in and a big thanks to everyone who writes messages.....we love reading them all.
Love,
Karen
Wednesday, July 5, 2006 8:37 PM CDT
*****************post transplant day #12*******************
Hope everyone had a wonderful holiday weekend. Bob and Matt came to visit and we were able to ALMOST see the fire works from Jordan's room over the East river....almost. Matt wasn't very happy with his limited view, but he kept himself busy by comparing the few splashes of color he could see outside to the same firework show being televised on NBC......the best of both worlds, right?
Jordan is still spiking fevers which they tell us is normal. When he does have a fever, he generally gets a whopping headache and just curls up in his bed and sleeps. When he's fever free, he is usually up and about in his room just trying to stay as active as possible. He and Bob have already put together a 400 piece puzzle of one of his favorite motocross riders which we have framed and ready to take home. He's also been throwing around a 5 lb. medicine ball to keep his strength up and doing stretching exercises when he's feeling good. His white count has jumped amazingly to 23.7 which is partly due to some of the medicine they are giving him. (GCSF) So they are planning to cut his dose in half to see what happens. His mouth sores are healing, but the mouth dryness and awful taste from the mucositis and meds is driving him crazy. Plus he's lost his ability to taste any flavors except for sour, but they tell us his normal sense of taste will return. I'm trying to keep him well stocked in Sour Patch Kids and sour anything I can find. He still doesn't have an appetite due to all of the above, but at least he's trying to drink and he's doing pretty good with that. Other than that he is hanging in there and taking it one day at a time. He has been away from home for almost 3 months and in this hospital room for 22 days now and he's still able to remain positive most of the time. We're so proud of how well he's handling everything and I think we're going to have to come up with something really special to reward him after he's recovered this time!
We'd like to say thank you to my friends at Bristol Hospital for feeding the gang at home for the past two weeks and again to the moms from Edgewood school and Melissa Begin for sending over the delicious homemade frozen dinners. Also, a big note of thanks to Mrs. Gaudet for organizing the turkey shoot fundraiser and to everyone who helped to make it so successful. Your kindness and generosity are truly appreciated.
One more thing.....today was a special day for us because we actually got to meet Beth Orgel and her son, Greg. As I've mentioned before, Beth was a constant source of information and support to us over the last 3 years and it was great to finally meet in person. Greg is adorable (sorry Greg) and we pray they receive good news from Dr LaQuaglia tomorrow.
Thanks for checking in on Jordan.
Love,
Karen
Sunday, July 2, 2006 2:58 PM CDT
*******************post transplant day #9******************
Hi everyone,
It looks like the doctors have finally found the best combination of meds to keep Jordan as comfortabe as possible with the least amount of side effects. They tried Dilaudid, Morphine and then Fentanyl with Benadryl and Vistaril along side to keep the itching and nausea at bay, but the itching just seemed to get worse and worse. (Knock on wood, the nausea has been kept well under control as long as food is not mentioned) The attending doctor from the pain team came yesterday and she decided to try an oral dose of oxycodone along with a low dose infusion of Narcan to help decrease the side effects of the narcotics. As usual, Jordan must be feeling the need to be looked at as "special" because they've never done this pain management on the pediatric unit before. We were originally told he might have to be transferred to the ICU stepdown unit to be monitored, but after discussing it with the nursing supervisor, it was decided he could stay in his isolation room. Thank God because I was having palpitations at the thought of having to move everything we've compiled here over the past 19 days as an inpatient.
So this combination of meds is working wonders so far....hopefully that continues. Unfortunately,yesterday morning he started spiking fevers which is normal, but scarey when we know he has a compromised immune system still. They did a chest Xray last night and that came back clear. Also, his blood cultures continue to be negative so this is good news too. His white count did not come back as zero today....it was 0.3 for the first time which may be just a fluke or it may mean his white count is beginning to recover. We'll have to wait and see what happens tomorrow. Sooooooo.........our boy doesn't feel well due to the fevers and he's been sleeping alot over the last few days, but he continues to stay positive. He is amazing the staff with his willingness to make the best out of this situation and they love how he's decorated his hospital room to make it feel like home. He's covered the walls with motocross pictures, one of his motocross shirts and we made big posters with pictures of all his friends and family so whenever we feel sad to be away from everyone, we just look at the pictures and it makes us feel better. He even has one of Sadie taped right to his side railing. Hopefully this fever will break soon and he'll be on his way to a record setting recovery.
Bob and Matt will be heading back into the city tomorrow night for a couple of days.....can't wait to see them.
Now...very important....two special boys on the DSRCT webpage need your prayers. Greg Orgel and Keegan Ott. Greg has been in remission since 2002 and will be heading to NY this week for an extensive workup due to some areas of concern that have surfaced on his latest scans. I'm looking forward to meeting them. And Keegan is a tough young man who has already been through so much and is now facing another battle against DSRCT. Please keep them both in your prayers.
Love,
Karen
Friday, June 30, 2006 8:39 PM CDT
***************post transplant day#7********************
Hello to all,
Yes it's true....Yesterday, Bob and my sister, Amy, surprised me by coming to NY for my birthday. Apparently they had been in cahoots for awhile with several people to make it all fall into place. All I know is that Liz, Jordan's day nurse, was in his room at 6:40am acting very cheery, wishing me a happy birthday, handing me a coffee and bagel from Starbucks and telling me she needed me to get dressed. I was looking at her like she was crazy because Jordan and I had just had a very sleepless night and on a good day we're not even up and at'em until around 8:30a.m. nevermind after only sleeping for a few hours. Anyway, she didn't stick around long enough for me to ask questions so I got dressed and was trying to make my hair look seminormal when I see Bob and Amy slip into Jordan's room. Bob said "Happy Birthday hon" and then Amy started washing and gowning up and she's like "hurry up....your ride is waiting downstairs" so now I was very confused ( and very tired ) so Bob said "You and I are going to the Live with Regis and Kelly show and Amy is staying with Jordan. Lynn (Matthews) is waiting outside to bring us to the studio" First of all I couldn't believe that these two were here in NY and second of all I couldn't believe that they had concocted this whole outing and were dragging me from my cot at the crack of dawn ;-), no shower, no make up to go to see Regis and Kelly in my wrinkled clothes I had at the hospital. Beautiful! ...... ANYWAY.....we had alot of fun, none of the things I was worried about mattered and it was great to be out doing something so different with Bob. And most importantly, Jordan got to have a nice quiet day with Auntie Ame just hanging out in his room and got to have a break from his OLD mother. Thanks Bob and Amy for a great birthday and a special thanks to all of their accomplices....Papa, Nanny and Gramma for babysitting, Lynn for chauffering to and from NY, Chris Lube for using his connections to get us into the show and Liz for making sure I was up in time and ready to go when Bob got there. Quite the team effort!
Now for Jordan's update:
Jordan is still very itchy and his mouth is pretty sore, even with the pain meds, so his doctors had the pain team come visit. They are trying a new combination of drugs to see if they can make him more comfortable and not have such terrible side effects. Hopefully we'll see an improvement by tomorrow. Jordan's counts are still zero, but this is normal.....maybe we'll some showing up by Sunday or Monday. They tell us he right in the middle of the hardest days of the transplant process, so he should start feeling better once his counts start to come back. Good job Jordan!
Hope everyone has a safe and happy 4th of July.
Love,
Karen
Wednesday, June 28, 2006 4:12 PM CDT
post transplant day #5
Oh such witty entries on the bridge today!! Thanks for all of your birthday wishes and for making me laugh! My sweet roommate, Jordan, wrote me a beautiful poem which made me cry. I knew that nice boy that I used to know and love was still in there somewhere....he just needed little Dilaudid and Vistaril to help him resurface! (Oh quiet, I'm just kidding!!)
Jordan is having a much better day today. Yesterday was a rough one. They were having a hard time finding a med that helped the pain yet didn't leave him wanting to scratch his skin off. They added Ativan to the mix which I told them it made him extremely emotional when he had it before, but they wanted to give it a try. Turns out this was not a good plan. He had the same emotional response that he did back in Hartford so I asked them to D/C it, which they did. Poor thing! But as I said, he is feeling much better now, his pain is getting more under control and the itching is improving. We counted IV bags last night.....he has 6 pumps and 13 IV bags up...crazy. I'll try to get a picture of that to show you.
Also, Jordan's hair is almost gone and the shedding hair is making him more itchy. The nurse was having trouble finding the clippers so she told him she had seen kids in the past use tape to remove the falling hair. Although he is sad to be losing his hair again, he did seem to be enjoying himself as he wrapped his head with tape and pulled off his shedding hair. ( see what happens when you're in isolation for too long??? The strangest things become entertaining! ) I told him he always looked great when he was bald the last time, but he doesn't think so. He was hoping he wouldn't lose it again. :-(
And the last bit of news is that he has the paraflu virus back that caused his original transplant date to be pushed back two weeks. Now that he is in the middle of transplant and he's tested positive for it again, they just give him meds to support him through. He just feels a little stuffy so far...hopefully it will stay a mild case.
I think that's enough for now.
Love,
Karen
Monday, June 26, 2006 8:39 AM CDT
posttransplant day #3
Hello everyone,
Jordan is doing pretty well still. The mouth sores are starting to bother him more and more, but he is still able to eat things like pudding, italian ice and ice cream ( especially Ben and Jerry's ) The doctors are trying a new pain medicine today because the morphine was making him very, very itchy....to the point that it was hard to tell which was worse, the pain from the sores or the itching from the morphine. Hopefully they'll find a med with tolerable side effects.
Bob headed home yesterday afternoon. It's been great to have him here for the last 5 days. My mother called yesterday to say Zach and Emily have colds. When I spoke to the kids on the phone, Miss Emily was playing it up for all she's worth. Hopefully they get better quickly because they are supposed to be going to Vermont at the end of the week with the Rondeaus and they would be sad to miss out on going to Papa's camp.
Matt said he feels good. So good in fact he felt it was completely unnecessary to have his bloodwork done today :) We told him we had to make sure his counts were back up so we know it is safe for him to play baseball. Poppy took him to the lab at about 9am....hopefully things went smoothly.
Alright, Jordan's tutor has just gotten here for their last session before her summer break starts. Wish me luck on trying to get him through the rest of Romeo and Juliet and his Algebra packet by myself after she is gone :-{
Love,
Karen
Friday, June 23, 2006 6:28 PM CDT
********* TRANSPLANT DAY *********
Hi everyone,
Jordan's transplant is done. Dr Prockop's team came in around 4:30pm and the whole thing was over by 5:00pm....Jordan was so unimpressed with the whole thing that he even fell asleep for a minute. (or maybe it was due to all of the pre-meds they gave him for the transplant.) Anyway, he did fine and he still feels pretty good, but the chemo is doing it's job and his white cell count is zero so his stomach is starting to bother him a little bit and he his temp is creeping up, so they've started some GI meds and antibiotics.
Grandma Dot and Papa came for a little visit today and Matt decided to go back home with them instead of hanging out with us for a few more days. His job in all of this is done and he had all 4 of his "lines" pulled out last night. (2 for injections, 1 IV and the temporary line in his groin that was used for the actual cell harvesting.) Matt was a little stressed with that last one coming out, but I don't blame him at all! It was about as big as a pencil and I'm not exaggerating! Then he had to lay there for 15 minutes while a resident held pressure to the site. Poor Matty...this was not the plan he signed up for!! He made it through like a real trooper though and once again we say.......THANK YOU MATT!! He was discharged to the Ronald McDonald House at 9:00 last night. He's a little sore and his platellets are low so he'll need a follow-up blood test next week, but as long as his bloodwork comes back normal, he can resume all regular activity.
That's about it for now......have a great weekend!
Love,
Karen
Thanks to Nanny and Poppy for getting Bob to and from the train station and a big thank you to Amy, Tammy and Steve for taking care of Emily and Zachary while Bob's in NY.
Wednesday, June 21, 2006 2:01 PM CDT
Day -2/ pretransplant
Today is a busy day. Matt already had his line placed this morning and is in the the process of having his stemcells harvested. Because they ended up putting the line in his groin instead of his chest (poor thing!!), he will be admitted overnight for observation. Bob will stay overnight with one of the boys and I'll be with the other. Fun, fun...at least we're on the same floor. Maybe Bob and I could meet in the parent's pantry for a date tonight!!
Jordan's counts have dropped to the point of him being neutropenic which means he is susceptible to infection. We've been displaced to the playroom for awhile while the cleaning staff "wall washes" the room which means they are washing every surface in the room and even hanging new curtains in preparation for transplant. When we go back to the room Jordan's isolation period will start. His biggest complaint right now is itching and he thinks he can feel a mouth sore starting, but all in all he is still feeling pretty good. Also, today was his last day of chemo....YAY!!!!!
That's it for now....Liz just came in and said his room is ready. I have to go unpack all his stuff....thanks for checking in!
Love,
The Marquis Family
Bob, Karen, Jordan, Matt, Zach and Emily
Monday, June 19, 2006 12:44 PMCDT
Day -4/pretransplant
Hi everyone,
We had a nice father's day weekend in NY with the kids. The hospital was lovely enough to once again put on a luncheon for the families and Emily and Zachary were allowed up to see Jordan even though they are under 12yo. The Collard family came to visit us on Saturday evening from Brooklyn. I took Meghan up to Jordan's room to hang out and then the rest of us (Me, Bob, Sue, Sean, Matt, Zach, Emily, Brianna, Carl and Tommy) went out for pizza. After that we sat in the park right behind the hospital so the kids could run around and play and we had a chance to visit. It was great to see them.
Jordan is still feeling pretty good although he is already losing the weight he gained while he was home. He has dropped 4lbs. in 5 days. He is hating the hospital food which is stressing me because he'll probably be in the hospital for another month. He can't have any take out food brought in because of the special diet he's on. He can have prepackaged food like frozen dinners, macaroni and cheese, and his favorite...spaghettios....yuck! but nothing like fresh fruit and vegetables, Subway grinders (the food that sustained him through chemo 3 years ago),and like I said nothing takeout because of the potential for germs/bacteria causing him a problem when his immune system is compromised. I think the food here is pretty good, but of course this is coming from someone who actually has enjoyed eating airplane food in the past as well as food from various hospitals over the past 20 years.....WHATEVER ;) so I'm not picky.....I'm just saying he needs to eat so his body can heal itself. I don't want him to have to end up with a tube in his stomach which they've already threatened him with if he loses too much weight.
Transplant is scheduled for Friday. Everyone is telling us this is a very uneventful day. They simply run in the small bag of cells they will get from Matthew like a normal blood transfusion and that's it....and then the waiting game begins to see if Jordan's body will accept the transplant. It normally takes between 7 and 21 days for the first signs of grafting to appear. His counts should be down to nothing by the end of this week at which point the GI sores, nausea and pain will start. They have meds to help with all of those things and he will probably end up sleeping ALOT until his counts start to come back up (which could take weeks). He will also be in isolation from this Wed or Thurs until he is discharged. They are very strict about keeping germs away from him during this time and all visitors will be gowned, gloved and masked ALWAYS. (even when I'm sleeping).
So far, so good.
Thanks for checking in on Jordan.
Love,
Karen
Thursday, June 15, 2006 7:01 PM CDT
Hi everyone,
Sorry it's taken me a few days to update. I tried to get to a computer on Tuesday at the Ronald McDonald House, but they said the computer room wasn't opened until 1pm and then when we were admitted to Jordan's room on Wednesday, our wonderful PCA, Rose and nurse, Liz, tried to get us one right when we got there, but it wasn't to be. That's alright though....we can use the one in the playroom for now and next week when Jordan is in isolation we will have a laptop in his room.
So anyway, things are going very well so far. He has received his first dose of chemo and didn't have any problems. We've been watching movies, going upstairs to the 15th floor to sit outside on the deck and there's also a pool table up there...not too bad for being in the hospital, right?! The doctors said he should actually feel pretty good until the end of next week and then the side effects from the chemo/low counts will start and he'll be pretty miserable for about 7-10 days, so for now we will have as much fun as possible! He will continue to receive chemo over the next 6 days and then his transplant will be on Friday, June 23rd. Matthew will be seen tomorrow in the pediatric day hospital for one last "once over" and to start his daily shots, then he'll be back next Wednesday and Thursday for his temporary line to be placed and his stem cell harvest. I think they are planning on keeping him inpatient overnight for at least one night, at least that's the plan at the moment. He is a little nervous so if you see him around give him some encouragement!!
Bob and the kids are arriving tomorrow for Matt's appt. and father's day weekend. It'll be great to see everyone and the kids are looking forward to doing something fun in the big city. Hopefully we'll have good weather so we can go to Central Park, otherwise we'll be stuck at the Ronald McDonald House watching movies.
Well, that's the update for now. All is well for the moment, the staff is great and we have a funny nurse practitioner watching over Jordan on the floor instead of the parade of residents like last time, so that is a lovely thing! That is courtesy of our favorite nurse, Liz. Thanks Liz!
We'll update again soon. Have a great weekend and thanks for checking on Jordan.
Love,
Karen
Monday, June 12, 2006 7:25 AM CDT
Well, our "vacation" is over. We are heading back to NYC in a few minutes to visit with the Bone Marrow Team and restart the pretreatment meds. We've had a nice break and it's been GREAT to be home. Jordan's cold is gone so I guess we're as ready as we can be. Please say an extra prayer for Jordan as he heads into this next phase of his treatment.
Love,
Karen
Thursday, June 8, 2006 8:36 PM CDT
Hi everyone,
We found out today that Jordan's parainfluenza test came back negative. This is great news. Dr Prockop called tonight to let us know that because of this, Jordan has once again been given the green light to return to NY on Monday to restart the pre-transplant medication. If everything goes as planned (ha,ha), he should finish his chemo on June 19th, Matt's stem cell harvest will be on June 21st and 22nd and the transplant will be on June 23rd.
Jordan is feeling much better and is planning on playing golf tomorrow with his friend, Matt Gotowala. I wasn't thrilled with the idea of him being out of my sight for that long (who is going to spray everything with Lysol before he touches it and make him wear his mask and use Purell??? :-) Matt...I'm counting on you!) BUT his doctor said it was fine. I'm sure they'll have a great time.
Well, Matty's baseball team lost tonight. They were the City Champs last year, so they were very disappointed. They had a great team and a fun season and I think the boys were very lucky to have the awesome coaches they had. ( Of course I'm partial to one of them!) Tomorrow night is Emily's 1st dance recital so we are looking forward to that. See.....some good did come from Jordan's transplant being delayed. We got to come home and see some of Matt's and Zachary's baseball games and we'll get to see Emily in her recital. It was breaking my heart knowing I was missing all of those things. We'll be ready for the next phase to begin next week though. Jordan can't wait to get it done and over with so he can go back to just being a regular kid. I don't blame him.
Love,
Karen
Monday, June 5, 2006 2:35 PM CDT
Hi everyone,
Jordan is going stir crazy. He doesn't seem to enjoy being trapped in the house for days on end with the family. I told him if he prefers we can head back to New York and he can be trapped in his room at the Ronald McDonald House with just his lovely mother, but he didn't respond. Imagine? We did let him go to his brothers' baseball games yesterday, but we made him wear a mask, so he was mad about that too. We're not sure what to do with him...keep him in the house with his sister who is coughing at night or let him outside with all the pollen. The goal is to get him free of any germs before transplant and keep him that way...I'm having visions of that movie "The Boy in the Plastic Bubble"...now that might work!
Today we went to see Dr Gillan and the gang at CCMC. Our favorite PCA from the 8th floor, Lucy, came down for a visit too. It was great to see everyone. Jordan is still stuffy so they repeated the parainfluenza test and did some bloodwork. We should know by the end of the week when we'll be heading back to NY and when transplant will take place. At this present moment the plan is to return on Monday to start the transplant prep week which includes receiving medicine for the mouth sores over 3 days outpatient, then chemo for 5 days inpatient followed by one day of rest and then the transplant. The doctors in NY are trying to decide if they will need to repeat his bone marrow test to be sure the leukemia is still at bay since we've had to postpone the transplant for an extra 2 weeks. Hopefully the blast cells, the "bad cells", are staying away and we can carry on.
His platellets are up to 93,000 which is great (a big jump from 39,000 as of last week) but his hgb dropped to 8.1 from 8.9 so he is low, but not quite low enough for a blood transfusion so we will be repeating his CBC on Thursday. Otherwise he's looking good.
Thanks for checking in on Jordan.
Love,
Karen
Wednesday, May 31, 2006 8:19 PM CDT
HOLD THAT THOUGHT........
I know you will be shocked to hear this, but there's been a change in plans. Jordan has developed some nasal congestion so Dr Prockop has chosen to postpone the transplant for a week or so. Jordan thinks it's just allergies because he feels fine otherwise, but I'd rather be safe than sorry so I'm glad they're waiting and giving him a chance to clear up. Although it is disappointing to be "off schedule", it is not an uncommon occurance. Today, before we left to come home, they had to redraw ALL of his labs because they have to be done within a certain timeframe in relation to the transplant. I believe there were 20 tubes drawn...good thing he has a port.( and insurance! ) Matt has to have a couple of tests redrawn too, but we're waiting to hear from Dr Gillan at CCMC to see if we can do it in Hartford and save Matt from missing another day of school for a trip to NY for a blood draw.
Sooooo....we are home for a few more days....again. We are keeping Jordan under house arrest. Drowning him with fluids. Giving him his medicine. Letting him rest. Making him wear a mask when he goes outside. Restricting his visitors - no one will be allowed into the house without being cleared by me or Bob. If you have a sniffle...don't even think about coming over. Give him a call instead. :-)
What's a few more days in the grand scheme of things, right??
Thanks for checking on Jordan.
Love,
Karen
Saturday, May 27, 2006 7:37 AM CDT
Hello everyone,
Sorry I haven't updated in a week, but I've been computerless! Can you imagine? We had a computer while Jordan was at the hospital and normally we have computer access at the Ronald McDonald House, but they are currently renovating the computer room, so needless to say I've been going through withdrawals. I hate not being "connected"! We've had a busy week in New York. Test, tests and more tests, but we finally have a plan. Monday,May 29th, through Wednesday, Jordan will receive an IV med (KGF) to help decrease the severity of upper GI sores from the up coming chemo, he'll be admitted Wednesday and high dose chemo starts Thursday for 5 days to prepare him for the transplant. Matthew has finished all of his prep work last week, but they want to see him on Friday, June 2nd, for one more check up. He will start his GCSF shots for 5 days after that which help to increase the number of baby white cells. Bob and Matthew will return to NYC on Tuesday night, June 6th, and Wednesday morning Matt is scheduled for his chest port to be placed and his stem cell havest will be done on Wednesday and Thursday, 4-5 hours each day. FRIDAY, JUNE 9TH, IS TRANSPLANT DAY. From there we can expect Jordan to remain in his isolation room for about a month, followed by at least another 2 week stay in NY as an outpatient so the doctors can keep a close eye on him. That is the current plan.....whewww!
Since Jordan doesn't need to be seen again until Monday, we are home again for one last 48 hour visit before his long hospitalization begins. It's great to see everyone, but we're being very protective of him at this time, so please, don't come over if you're sick!! We have to keep him healthy and strong. Our job this weekend is to fatten him up a little before the chemo starts because he's already lost 10 lbs. I don't seem to be having this same problem!
Thanks to everyone who's been sending cards and calling with good wishes and a big thanks to Jenna Rodjenkski, Mrs. Satherlie and the Edgewood School 1st grade moms for keeping my family fed while I'm away!! It warms my heart to know they are enjoying home cooked meals and not McDonalds and pizza everynight! And a big thank you to Marie Bowes and all of our family for keeping things running as smooth as possible at home.
That's all for now....enjoy your holiday weekend. I know we will!
Love,
Karen, Bob, Jordan, Matthew, Zachary and Emily
Saturday, May 20, 2006 7:52 PM CDT
Hello,
Just wanted to let you know that "we've been sprung!" Yippee....they said Jordan could go home. So we decided to go HOME, HOME....not just to the Ronald McDonald House. As soon as it was a definite thing that he was being discharged, I popped onto the computer to find the soonest train home. Nanny and Poppy were kind enough to pick us up and here we are...back in Bristol...only for about 48 hours, but we'll take what we can get! It's very green here. When we left in April, everything was just starting to bud. I guess all of the rainfall helped everything to bloom quickly. Jordan's already out the door. We've been home for about 2 hours, went to the little league field to surprise the kids that we were home, watched the last bit of Zach's game and then Jordan left us to go over Steven's house. Of course I made him take a bottle of Purell and a mask with him....you can't be too careful, right?! I'm hoping to see him at least once in awhile over the next 2 days....at least long enough to give him his medicine. He looks good...pale and skinny, but good. It's nice to be home.
Love,
Karen
Tuesday, May 16, 2006 7:03 PM CDT
Hi everyone,
It's nice to be able to write that Jordan had a good day today. His fever has been gone for over 24 hours and his legs are feeling better everyday. We are hopeful that his white count will start to recover and we can get outta here for a few days. We had a nice visit with Bob, Matthew, Zachary and Emily this weekend and then Gramma Dot and Papa came to visit on Monday for a few hours. It seems everyone is having eventful trips either into or out of the city.....never a dull moment!
Today was Yankee day around here. The hospital had a fundraiser for the pediatric unit and outpatient clinic. They sold Yankee t-shirts and Johnny Damon and Bubba Crosby were stationed downstairs for a big autograph signing session. The doctors only let 2 or 3 kids from the unit go down and Jordan was lucky enough to be one of the chosen few. (I'm sure our angel nurse, Liz, pulled some strings.....thank you, Liz) We popped Jordan into a wheelchair and went down there....it was crazily crowded, but that's a good thing for the kids. Being that he was one of the inpatient pediatric patients he was zipped to the front of the line and he was able to meet both players and get a ball and his t-shirt signed. Fun!
Love,
Karen
PS My sister Amy and her two children Max,4, and Julia,2, were involved in a car accident today. Poor Max had to get 19 stitches in his forehead and besides some bumps and bruises, the ladies are OK. I guess the saying is "when it rains, it pours"....I think the family has had enough excitement!!!
Friday, May 12, 2006 3:23 PM CDT
Hello everyone,
Well Jordan is continuing to stump the doctors with his horrifying leg pain. He's been so sad and uncomfortable these last few days that it's heartbreaking. He's gone through morhpine, dilaudid, and fentanyl.....all with side effects that caused further distress and/or limited pain relief, then back to morphine and now dilaudid IV and by mouth. Since nothing has really helped with the pain they keep changing things and trying to see if a different dose or a different med will do the trick. Trial and error. Knock on wood....he's pretty comfortable at the moment. (SHHHHH....don't say it outloud!)
Today, because no one knows what the leg pain or the continuous fevers are from, he went for a biopsy of his left calf. As Dr Steinhertz says,"to see if it can make the doctors smarter." We should have some results by Monday, but he reminded us that it may still not give them any new information. Jordan also had a spinal tap to rule out any infection and a bone marrow aspirate to evaluate how many blasts or "bad cells" are still floating around. The good news is that there are zero blasts which may mean we can proceed to getting ready for transplant as the next step instead of having to go through an extra round of the Cytarabine and Aspariginase chemos. The annoying part is that his white count is still very low which means he'll probably be in the hospital just recovering from that for another week. Hopefully by then the fevers and leg pain will have disappeared. It's very stressful seeing doctor after doctor come through and none of them have any idea where this fever is coming from or what is causing the leg pain. At this point Jordan can't put any weight on either foot ...yes, the pain returned in the right calf,...it's very frustrating. He has pictures up all over his room of his friends and brothers and sister, and alot of himself on his dirtbike flying through the air which the doctors love to see. They know this is not a wimpy boy they're dealing with and the pain is very real. Thank goodness the staff of the floor is so great...they make a very sad situation alot more tolerable. Our primary nurse is Liz and she is like a ray of sunshine everytime she walks into the room. We love her. Isn't it funny how our favorite person at CCMC was Lucy (Luz) and here we have Liz? Hmmm....alright, I'm tired. I'm starting to ramble.
Bob and the kids will be on their way into the city in about an hour so we are very excited to see them. A big happy birthday to Matty who is turning 12 tomorrow. (Perfect timing because they are very strict with their visitor policy here...no kids under 12 so at least he'll be able to come see his big brother) I think I've figured out where I can stand outside with Zach and Emily so Jordan can wave to them from his window. :-(
Happy mother's day!
Love,
Karen
Tuesday, May 9, 2006 1:47 PM CDT
Oh such witty messages on the bridge!! You make us laugh! Jordan is doing pretty good. His right leg is feeling much, much better, but the left is still very sore. He went for a second MRI this morning. They originally had him scheduled to go last night at 10pm as an add on (you know much I love those late appts.!), but anyway we found out at 11pm that they weren't going to do it until the morning after we sweated all the way through CSI MIAMI thinking they were going to come for him any minute. Jeez...don't they know we're under enough stress! :-)
The first MRI showed fluid in his calf muscles which they are assuming is blood which would explain the pain. They think it happened because his platellets were low and the exercise he is normally able to tolerate is apparently not the case when his platellets are low.
So it's seems like things are improving although he did spike a fever today after 5 days on IV antibiotics. Cultures are coming back negative, counts are coming back up so hopefully the fever will be short lived.
Thanks for checking on Jordan.
Love,
Karen
Saturday, May 6, 2006 11:43 AM CDT
Hi everyone,
Jordan was admitted Friday morning around 5am for fever, low counts and pain in his lower calves and ankles. The pain started out as a little soreness on Thursday morning and gradually increased to the point that he can not stand or walk for more than a few steps. Shockingly enough, the doctors have not seen this before! :-) They expect to see bone pain caused by the shots the kids get everyday to boost their counts, but they can't figure out this muscle pain. They've ordered lots of tests which are coming back normal and we're waiting to see what the MRI showed. For now he is tucked in, trying to catch up on his sleep because it's been a rough couple of nights. The medicine they are giving him for the pain is making him very nauseated, so he gets medicine for that and it's just a crazy, vicious cycle. We are getting a little cranky with each other, so it's a very good thing that Bob is coming to stay overnight. Jordan's private duty nurse is just tired and I'm sure she will return to her normal cheerful self soon....I think!
We'll let you know how things are going when we know more.
Love,
Karen
update: moved to new room
room # 911-A
phone # 1 212 639 4061
Sunday, April 30, 2006 6:12 PM CDT
Hello everyone,
Thanks to all who have checking on Jordan and especially to those leaving messages on his site. We love to read them especially now that we are away from home. Jordan finished his second round of chemo on Friday and in "Jordan fashion" is continuing with his need to be "special!" They told us that his counts would most likely drop this past week and he would develop a fever by Friday....maybe Saturday. Here we are, Sunday evening, and Jordan is hanging in there with a temp of 98.3'F. Not that I'm complaining, but I've been watching him like a hawk for three days wondering when it's going to happen. What he has developed is a condition like pink eye without the infection. This is caused by the chemo Cytarabine. They warned us about it last week, but said it's rare. Jordan's nurse caring for him on Friday has worked at Sloan for years and said she's never seen it before. OF COURSE NOT!!! That special kid of ours.....couldn't he just be normal for once??? He says it feels like when you get shampoo in your eyes multiplied by 100. He is just now able to tolerate being in a lighted room, so I think that the eye drops and hot/cold compresses are finally working. We spent all of yesterday and most of today in our room with the blinds closed and a pillow over his head. I read an entire Danielle Steele novel yesterday by the glow of a night light. It's not bad enough that he is making my hair go gray, now he's going to make me need glasses too!! I guess I'll have to stop calling him Helen now that he can finally open his eyes.
Today we had a fun surprise. We were still tucked in bed at 10am when the phone rang and the front desk said we had visitors. I thought it must be our friends from Brooklyn...who else could it be?? I couldn't believe it when the elevator doors opened and there stood my sisters, Carol and Kathie, crying, holding a bag of Dunkin Donuts muffings and lugging a big cooler filled with frozen dinners and leftovers from Kaitlyn's first communion party yesterday. (God forbid I miss out on the leftovers!! You know how us Farago's love our food!!) It was a wonderful surprise and we all got to hang out in the dark room trying to amuse Jordan. Thanks again girls!! My mother called about an hour after they left to go home to tell me that there was some problem with their connecting train in Bridgeport so they had to take a bus from Bridgeport to Waterbury and since there weren't enough seats they got to stand the whole way home going 70 miles an hour. John....is that legal??? That's love, huh???
Tomorrow we head back to the clinic for a visit if he makes it through the night fever free. I'll keep you posted.
Love,
Karen and Jordan`
Wednesday, April 26, 2006 9:49 AM CDT
Bob and Jordan left for NYC this morning around 5. Bob said there was no traffic at all and they were killing time in their room before heading over to the hospital. Jordan is scheduled to start his next round of chemo this morning as an outpatient. They expect his counts to start dropping this week which will most likely lead to a fever and he will be admitted when that happens.
Jordan had a great weekend hanging out with his friends and dirtbiking a little bit. I've been trying to get back into the swing of things with the dressing changes and medications.....it's been awhile, but I think we did OK.
So we assume this is the point that Jordan will remain in NY until he's done. Of course you know what they say about assuming. The nurse practitioner did confuse us a bit this morning by asking what our plans were for the upcoming weekend....Bob said he thought they would be telling HIM what would be going on. So she said they like to send the kids home as much as possible before they get sick, but they were expecting him to drop his counts by the end of the week. The crazy part is that they asked if we would prefer him to be admitted in NYC or back home. (???????????) And what was the reason the initial chemo couldn't be done in Hartford again?? Bob told her that the doctors had said Jordan would need to get all of his treatments in NY, so she said they do that sometimes. I think the confusion stems from too many different teams of doctors,nurse practitioners and nurses giving us different information.
Anyway, all is fine so far today. We'll keep ya posted.
Love,
Karen
Saturday, April 22, 2006 4:50 PM CDT
Hi everyone,
Friday was Jordan's final dose of chemo for his first round. He is doing very well so far, although on the way home yesterday he felt a little warm, nauseas and very tired. I was like, "WHAT ARE WE DOING TAKING THIS KID HOME????" But, I think it was just his body catching up with the crazy week they had in NY, as well as adjusting to the meds. He went to bed and didn't get up until 1pm. He is fever free and feeling much better, a little tired and pale, but much better than last night. They don't expect his counts to drop for another week, so the doctors in NY recommended going home until Wednesday, as long as he continues to feel fine. He will start his second round of chemo Wednesday morning. Yesterday my mother, Emily and I decided at the last minute to surprise Bob and Jordan in NY. We took a train into Grand Central Station and would've completely surprised them at the hospital, but I had to call Bob from the taxi because our driver didn't know where Memorial Sloan Kettering was located. (???) I knew it was 1275 York Avenue, but I didn't know the coordinating street, which I now know is 67th street. Anyway, it was fun to surprise them and hang out for a few hours, show Grandma and Emily our room at the Ronald McDonald house and then turn around and come home. At least now I know how to get to NY on a train.
Have a great weekend.
Love,
Karen
Thursday, April 20, 2006 4:18 PM CDT
Hello,
Bob just called to say Jordan has finished his second round of chemo and is feeling great. He will get another round tonight at the Ronald McDonald house and another tomorrow morning at the hospital day clinic. Bob is expecting to head home around 4pm tomorrow if all goes well. They are wandering around the ToysRUs store right now and probably going to Bubba Gumps for dinner. Yesterday they were able to visit with our friends from Brooklyn, Sean and his 15yo daughter Meghan. Sean is extremely entertaining and he had Bob and Jordan laughing hysterically.....just what they needed. Now, isn't that a nice update???
Love,
Karen
Tuesday, April 18, 2006 6:56 PM CDT
Hold that thought.......
As usual, just when we thought we had a plan, well.....you know the drill. Bob and Jordan arrived for their appt. today and soon found out we really have no clue what's going on. Last week we were told that Jordan could not have the newly added first rounds of chemo done in Hartford because of the probability of serious side effects coming on quickly due to the chemo and radiation he's already been exposed to during his last cancer treatment. New York felt they would be quicker to pick up on anything serious and know how to deal with it since they treat this disease more frequently than Hartford does. Fine. Not happy about the added 1-2 months in New York, but whatever is best for Jordan. ( I say that lightly, but really we've been in a little tizzy since we found out!) TODAY we find out that chemo will begin tomorrow afternoon as an outpatient over a 2 day period and then most likely they would be discharging Jordan to home on Friday until next Wednesday. WHAT????? What happened to having to watch him so closely that they weren't even comfortable having our hospital in Hartford do his chemo rounds? Yes, let's discharge him to home...2 1/2 hours from New York on a good day...and hope he doesn't develop any of the side effects you scared us to death about last week. Hartford's plan had been to do his chemo as in inpatient and keep him in the hospital until his counts came back up, so I'm starting to question who would be watching him more closely. What happened to thinking we were staying in NY from today until sometime in July? UGH!
This is just the tip of the iceberg of today's twists and turns, but I think I'll spare you a repeat of last week's tirade....I'm too tired from all the packing, organizing, and rearranging we did all holiday weekend thinking we wouldn't be here for the next 4 months. Oh well.....I used to be such a go with the flow person...what happened?
Let's hope for a quiet, uneventful day tomorrow.
Love,
Karen
PS Thanks to Auntie Amy for updating Jordan's pictures...take a look.
Monday, April 17, 2006 6:47 PM CDT
Hi there everyone,
Just wanted to let you know what the plan is so far. Jordan and Bob will be leaving in the morning for Sloan Kettering. Jordan will have his port placed around 11:30am and a PET scan is scheduled for 5pm....those are the definites. The thing we're not sure about is whether they will be starting chemo tomorrow or Wednesday. Last week they said starting chemo on the same day as port placement and PET scan would be a very overwhelming day, so we requested the chemo be held off until Wednesday. We'll see what happens. I am staying home with the other 3 kids until Friday because that way I can continue trying to organize everything so it's easier for Bob when he gets home and also because we're not sure how Jordan is going to tolerate the chemo this time. If it's anything like the first round last time, he's not going to want to have all 6 of us staying in the one room at Ronald McDonald. I still can't believe the plan is to do it as an outpatient initially. If he does OK, then we'll all head in on Friday. If not, I'll go in to spend the weekend with Bob and Jordan before Bob heads home on Sunday.
That's all for now. Thanks for all of the messages and phone calls. Please keep Jordan in your prayers as well a few others putting up a great fight right now, Mikey, Marlena and Nikki.
Love,
Karen
Wednesday, April 12, 2006 6:47 AM CDT
Please don't mind me as I ramble and rant for awhile. I'm feeling the need to vent.
I've often said over these past 2 1/2 years that having your child treated for cancer is heartbreaking. You wish you could take his place. The thing that makes it so much worse is the rollercoaster ride the doctors put you on. For example, when Jordan was first treated for his DSRCT they thought he might have appendicitis, then it went to a dx of cancer, most likely lymphoma, but wait..... the good news is that lymphoma is highly curable. Woops, it's not lymphoma, it's DSRCT and that has a poor survival rate. up,down,up, down....it's an emotional rollercoaster. And it's continued to be the same case at Sloan as well. Not that the doctors do it maliciously...we love Jordan's doctors. I'm sure it's just because as parents we are hanging on every word they say and when they say something positive, we're thrilled, but alot of times the happiness is short lived. So I've learned not to get too excited when they give us good news. I try to stay mellow because more than likely they are going to say something different soon anyway...and of course this is only in regards to the good news. They're usually right on the mark when they give us the bad news.
So........I guess because Jordan had officially finished his treatment a year ago this February and was doing great, we let our guard down. We actually started to think we might be able to start moving on instead of just "treading water and waiting for the bomb to fall", things were getting better in school for Jordan, I was taking a computer class and looking into taking a RN refresher course because I was going to need to start working again. Then out of the blue after a routine 3 month check up, Jordan gets diagnosed with this secondary cancer. Not that we didn't always know this was a possibility, but he looks great and feels so good....it just sort of stopped us in our tracks.
Last week, we were given the two treatment scenarios that the transplant team at Sloan was deciding between and they said they were leaning towards the shortened version due to his low number of bad cells and the fact that he's already had so much chemo/radiation. We were told he would most likely be admitted on the 18th to start the whole process which would take 1-2 months. I thought this plan was bad enough, but we were happy he was going to be getting the shortened treatment plan. (Big mistake allowing ourselves to feel happy about the plan.......put your hands up kids.........the rollercoaster is on it's way down!!) Yesterday we went to Sloan for what was supposed to have been reworked to be a short visit because we were asked to bring Matt and Zach in, so of course if we're bringing 3 kids in, we might as well bring all 4, so we brought Emily too. ( I won't even go into the 2 1/2 hours on the phone with 4 different people trying to reschedule things except to give you an example of the annoyance I've had to deal with I will say this. They thought by rescheduling his PET scan to Friday (Good Friday mind you) that would make our visit to NY yesterday less lengthy for the kids. Great I guess......however this now adds an additional trip into the city which would end up being a 6-8 hour ordeal, so I'm thinking this isn't helping at all! I didn't start to cry on the phone until I asked what time the scan was rescheduled for and was told 7pm....on Good Friday....Yes, please let us drive into the city during rush hour while people are traveling for the holiday weekend. AAAAHHHHHHHHHHHHHHH!!!!
OK.........I'm getting off track now.......so to make a long story short, yesterday during our (shortened) 14 hour visit to NY they looked at a new slide of Jordan's bone marrow and found that the number of "bad cells" has increased. So the plan we were prepared for has changed. (shocking) They now want to give him a couple of rounds of chemo before they start the transplant procedure, but they won't allow us to do this chemo in Hartford so they have now added an additional 3-6 weeks to our stay in NY as well as a whole lot of painful side effects for Jordan. We are devestated! Our stay has now jumped from 1-2 months in NY to 3-4 months. Plus the transplant they want to do will be "T cell depleted" meaning they take a certain white cell out because there will be less side effects for Jordan which is good, BUT the downside is that he will be highly susceptible to infection for a longer period of time. (6 months instead of 3)which means he will probably not return to school until after Christmas. Now, this also means a more difficult collection process from his lucky donor, Matthew, but that's a whole other story. I think I've made you read long enough so this is where I'll end.
Please keep Jordan in your prayers.
Thank you.
Love,
Karen
PS The one good thing about yesterday is that they cancelled the PET scan on Friday and will do that when he is admitted for his chemo.
Monday, April 10, 2006 9:27 PM CDT
Just wanted to say hello and let you know we are all heading to New York tomorrow. The schedule they have us on is ridiculously long and trying to rectify it has simply made it worse. Hopefully, we will learn the start date for the bone marrow transplant procedure after visitng with the team tomorrow. They seem to be leaning towards next Tuesday, the 18th. We'll let you know.
Love,
Karen
Thursday, April 6, 2006 8:24 AM CDT
OK.......let's try this again. Yesterday I attempted to update the bridge.... twice. The first time after I wrote the whole thing out, I got up to answer the phone and Emily deleted the entry. Fine...who cares that it took me an hour to get it worded just right. So....I wrote it out again, decide to fix something, tried to go back to the "author page" and the computer said the page has expired and wouldn't let me get back to where I was. Now Bob can't understand why I haven't updated the bridge when it seems that all I've been doing is typing away for 2 hours. AAAAAAAAHHHHHHHHHH!!!!
Soooooo............, we went to NYC on Tuesday to meet with Dr Kushner, the transplant doctors at Sloan Kettering and to have a CT scan done. Dr Kushner said that no one knows why one child develops MDS and another one doesn't, but it happens especially after receiving the high doses of chemo and radiation that Jordan received the first time around. The good news is that because he was treated for cancer before he may be eligible to receive a "shortened version of the treatment" because they worry about exposing these kids to alot of chemo again and causing further damage to their heart, lungs and liver. Normally to treat this, they give 3-5 rounds of chemo to get the kids into remission and then they do the bone marrow transplant. Because Jordan has been treated for cancer before and presently has a "pre-leukemia" and doesn't have full blown leukemia yet, he falls in a gray area. This means they would like to skip the initial 3-5 rounds of chemo and go straight to the bone marrow transplant. This "best scenario plan" happens only IF they have a perfect donor match from a sibling. The good news is that last night we learned that Matthew, Zachary and Emily are ALL PERFECT MATCHES! Apparently this is extremely rare for all siblings to match perfectly so we've finally gotten some good news. Also, Jordan's CT scan came back negative which means his original cancer, DSRCT, is still in remission. ( Yesterday was a good day! )
We will head back to NY next Tuesday for a PET scan, repeat bone marrow and another visit with the transplant team at which point hopefully we will have some idea of when we will start treatment. Although we may be lucky enough to qualify for the "short treatment plan", it will still be very difficult. We've been told to plan on living in NY for 1-2 MONTHS after the transplant is done. During the first month, Jordan will be kept in isolation. Once he has recovered to the point of being able to be around people he'll be discharged to the Ronald McDonald house for 2-4 weeks so that his transplant doctor can evaluate him on an outpatient basis 2-3 times a week. After that, they will let him go home and Connecticut Children's will take over, although he'll have to go back to Sloan Kettering periodically. So, the short plan isn't really very short at all, but it's better than what we had initially thought would happen. I think Jordan will be able to handle the side effects of the treatment OK especially because he's been through them before, but I'm worried about the month of isolation and the length of time he'll be away from home and his friends. Also, I'm not quite sure how to keep things as normal as possible for the other 3 kids at home. Right now we're thinking that both Bob and I will stay in NY for a week or so, and then Bob will return home so he can go back to work and at least one of us can be with the kids every night. I will stay in NY with Jordan. Bob will come back to visit on the weekends and bring the kids when they don't have too many things going on like baseball games, swimming lessons, dance recitals, etc. ( You know how crazy the end of the school year can be!) Anyway, that's the thought right now....we don't have a start date yet, so because the thought of this is a bit overwhelming, I think I will choose to stay in a little bit of denial for now ....at least until next Tuesday :-)
Thanks to all who have been calling us or writing on the caringbridge site to offer support to Jordan. It means alot to us. Please keep Jordan in your prayers. Thank you.
Love,
Karen
Friday, March 31, 2006 9:10 AM CST
Well.....where to start?
First of all, let me apologize for not updating since January. We've been having alot of trouble with our computer and I can't send off emails or messages from my email address. (To all of the gang on the DSRCT website, please know you've continued in our thoughts and prayers even though I couldn't send messages onto your sites!) February was a good month for Jordan. He reached his 1 year anniversary of being done with treatment and also his 2 year anniversary of being cancer free. School-wise he is doing better after we realized he is suffering from some cognitive "late effects" due to his cancer treatments and the stress of everything he went through and he is now receiving support for these issues.
Unfortunately, this isn't our main concern any longer. Two weeks ago Jordan went in for a routine check up with his oncologist and everything was fine, until his bloodwork came back. His platellets were very low for no reason at all. He had a bone marrow aspiration procedure the following week and this week we have FINALLY learned that he has been diagnosed with a pre-leukemia syndrome called MDS. It is a side effect of the chemo he received to fight the DSRCT. Besides the DSRCT returning, a secondary cancer surfacing was our greatest fear. Fortunately, it has again been caught early, but the bad news is that they treat it just like he has full blown leukemia. At this point we do not have the full treatment plan because we have to meet with the transplant team to get that info, but for now we do know that he will need several rounds of high dose chemo followed by a bone marrow transplant. From what they have told us, he will be in the hospital for much longer periods of time with each round of chemo (which is very depressing) due to the toxicity of the meds being used this time! We thought last time around was hard! Poor Jordo!! Bob and I took the kids to the Children's Hospital the other day so we could all be tested to see if any of us are a match if needed. Sloan does have Jordan's stem cells on hand from his first time around, but they're not sure if they can use those yet.
Sooooooooooooo..............right now we are just waiting to see when we can meet with the transplant teams at Sloan Kettering and Dana Farber and then we will know when we can start fighting this new battle. Please keep Jordan in your prayers. Thank you so much.
Love,
The Marquis Family
Saturday, January 14, 2006 5:09 PM CST
Hello everyone,
I thought I would take a moment and update the site even though there's nothing really to report about Jordan's DSRCT status...all is well in that regard thank God. He has a cold that he's been fighting for a couple of weeks, but that's about it. How wonderful to be able to say that! We are nearing his 2 year anniversary of being "cancer free" and we don't take one day for granted because we know we have a long way to go before we can relax and not let this horrid disease be a daily worry. There are several people on the DSRCT site who were cancer free at one point and are now fighting the battle again. SCARY!!
Besides worrying about Jordan relapsing, we now get to worry about his grades. He has always been a good student, but he has not had an easy time adjusting to high school and is struggling in several subjects. He does get tutored afterschool 3 times a week now, so we're hoping that will help. He thinks we're just trying to kill him by making him go there. We are so mean!! All he wants to do is hang around with his friends and ride on any motorized thing he can find.
The other kids are doing fine. Emily loves school and can't wait to take the bus next year when she is in Kindergarten. Zach likes being a 1st grader because he loves eating lunch at school and having recess. And Matty...if we could just get him to stop talking in class, we'd be all set. A little too social for the teachers' liking, but grade-wise he is doing very well.
If all of that wasn't exciting enough, we've finally started our "kitchen restructuring." We are just rearranging our cabinets and appliances ( and a wall or two) so the kitchen has a better flow. (Don't you just love HGTV!! :) Bob gets very nervous when he comes home and I'm walking around with a tape measure in my hand, looking at various walls!) It's his fault really...if he wasn't so talented with home remodeling I wouldn't even be thinking about this stuff.
Alright, enough rambling...just wanted to say hello and wish everyone a safe and healthy 2006!
Love,
Karen
Tuesday, December 20,2005 20:30
Happy Holidays Everyone!
We were in New York over the weekend for Jordan's scans and I'm happy to say Dr Kushner just called to say they were all clear again!! Yay!!! We had all of the kids with us for this visit and we had alot of fun. We had a great time with our friends the Collards in Brooklyn and then we headed to Manhatten on Sunday and checked into the Ronald McDonald House so that we'd be close to Sloan Kettering for Jordan's tests on Monday. We walked all over,so that the kids could enjoy the city at Christmas time. We were able to see the tree at Rockefeller Center, Radio City, Time Square, but I think the kids' favorite part was hanging out at the arcade/playroom at the RMDH and playing on the playground acrosss the street from the hospital as we waited for Jordan's scans to be finished, knowing that they should be in school at that moment.
Anyway, I just wanted to update you and wish everyone a very happy and safe holiday season. Enjoy!!
Love,
Karen
PS Please say a prayer for some special kids....Brittany, Keegan, Nate, Nikki and Greg. Thanks!
Friday, November 18, 2005 9:21 AM CST
Hello to all,
Well Jordan had his latest visit with Dr Gillan at the Children's Hospital and he is still doing great. We did have some concerns about his "ATTITUDE" lately and we've even gotten to the point that we are hoping that we can blame some of it on the treatment he underwent. All those chemicals....radiation....come on, they could've done something to make him have these mood swings. He couldn't possibly be this difficult just because he is almost 15, right??? Dr Gillan, who also has 4 children, just laughed when we asked what she thought. And then when she was done laughing she said to sit down and tighten our seatbelts because it'll probably last another 3 years. Lovely! I must admit I was warned about these teenage years, but after seeing what a trooper Jordan was through all the stages of his treatment, I thought for sure he'd carry on as the sweet boy we've known and loved all these years which for the most part he has, but sometimes...... ;-)
Hope everyone has a wonderful Thanksgiving.
Love,
Karen
Friday, November 4, 2005 4:26 PM CST
Hello everyone,
Nothing new to report with Jordan. He is just trying to adjust to being in high school. He tells us that we don't understand how much harder high school is than middle school. Helloooo.....we're not that old!! He's been feeling a little more tired and run down ever since school has started and I'm trying to control myself from thinking negatively. I'm sure it's just due to the new schedule he is on. He does have an appt. with Dr Gillan in a few weeks and then he has his next set of scans scheduled in December....I'll feel better after that.
There are few kids on the website that could use some extra prayers right now, so please add Nikki, Keegan, Nate and especially Brittany to your list. Thanks.
Love,
Karen
Thursday, October 6, 2005 11:17 AM CDT
Hello everyone,
Tomorrow evening we will be off on our annual trip to Vermont to enjoy some leaf peeping. Who cares that it's supposed to rain and that the foliage is about a week behind, right??!! If that is our biggest concern at the moment then we are truely blessed! Columbus Day Weekend has always been our favorite time of year. Unfortunately it's also the anniversary date of Jordan's diagnosis. For the past 2 years I've had to remind myself to enjoy the beauty of this season because I find I keep flashing back to being at the Children's hospital and hearing those horrifying words, "Jordan has a rare,aggressive cancer." But then I focus on the positive and remember that he is presently cancer free. Just the other day Jordan asked if we were going to do something to celebrate Oct. 7th, the day he was diagnosed. I said I don't really think that's the day to be celebrating. I think Feb.25th is the day to celebrate because that was the day he had his surgery and has been cancer free since then. Jordan said, "well, I think cancer was a good thing in my life because it made me realize what's important and I got to meet alot of nice people and go places I wouldn't have gone to if I didn't have cancer. Plus everyone was so nice to us." He made me cry. I'm so glad he has focused on the positive aspects of this ordeal, rather than the negative. He continues to have the great attitude towards this disease that he had throughout his treatment. I guess we'll have to celebrate tomorrow too!! Thank you God for getting Jordan to the 2 year anniversary point, cancer free. Lots of other people diagnosed with this cancer have not been so lucky and we are truly grateful for the miraculous recovery he is presently enjoying. And a big thank you to everyone who helped make this journey a bit easier, your kindess is thought of often.
Love,
Karen
Friday, September 23, 2005 7:31 PM CDT
Hi everyone,
Nothing new to report really. Jordan is feeling well and his leg is healing nicely although there's going to be one heck of a scar. He is adjusting pretty well to the new high school routine......not too happy about getting up so early, but he likes getting out at 2:10pm. Today he started working at a convenience store down the street for a few hours a week. He'll be working with a friend of his and he's really excited to have the opportunity to earn a little extra money. (me too!)
This week is the start of the MUM FESTIVAL....a big deal in Bristol. The Mum parade is Sunday and Jordan's brother, Matt, will be on a float with his little league team because they are the City Series Champions, just like Jordan's team was when he was on majors his first year. (how's that for pressure on my little Zachary!) Anyway, we go every year and have a great time.
Hope to see you there.
Love,
Karen
Monday, September 12, 2005 8:15 AM CDT
A few days ago I was on the www.dsrct.com site checking on "my usual kids" that I like to check on just to make sure everyone was doing OK and found out some very sad news. Brittany, a little girl from Florida, whom I've been following for over a year has been having a tough time battling this cancer, but she just recently returned to school while she continues to receive treatment. She is surrounded by a wonderfully close family and group of friends that has an amazing faith in God. I thought things were looking up, but I just learned that her father passed away unexpectedly after being hospitalized for kidney stones. To think of Brittany's poor mom losing her husband as she fights for her daughter's life brings me to tears. As if that story isn't heartbreaking enough, on Sept.10th, Dustin, a 16 y.o. boy from Canada died after battling this cancer since February. His mom wrote that it had been cloudy the last few days, but the moment Dustin died a beam of sunlight broke through and shone right into his hospital room. I am so saddened by these 2 deaths that I just wanted to ask everyone who checks on Jordan to please say a prayer for the families of these 2 special angels.
Remember: Live everyday to it's fullest and don't take anything for granted.
Love,
Karen
Thursday, August 25, 2005 11:11 AM CDT
Hi everyone, Dr Kushner called to let us know Jordan's scans came back clear again!! We're so happy!! Thanks for the thoughts and prayers.
Love,
Karen
Monday, August 22, 2005 0:04 AM CDT
Good Morning everyone, Well....Jordan will never be accused of making our life boring. Tonight I just wanted to have a quiet night because Jordan is having his next set of scans in the morning in New York, but first I wanted to run quick and visit my father in the hospital. (After 2 weeks in the hospital he's finally feeling better, but that's a whole other story!) so anyway, we're out in the driveway trying to get all the kids in the car so we can leave and Jordan and Matt are not listening (shocking I know!) riding around on their bikes (regular bikes, not dirtbikes) for one last spin. Jordan did some trick, came down and somehow missed his left pedal. He scraped a 1"x 6" deep gash down his shin. We spent 4 hours in the hospital and 2 of those hours were spent stitching him back together, layer by layer. We lost count on the stitches once they passed 35. Ahhhhhhhh, boys and their toys!!
I think I just heard him shut his light off, so he'll only get about 4 hours of sleep before he and Bob leave for Sloan Kettering in the morning. So much for that quiet evening!! Please say an extra prayer for Jordan today that his scans remain clear and for all the people affected by this disease. 2 kids on the www.dsrct.com website have recently relapsed and are fighting the fight again. Every 3 months we walk on pins and needles waiting for that phone call telling us the results of his scans. We've been amazingly blessed with clear scans ever since his surgery and we pray everyday he stays in remission. Thank you so much for continuing to check on Jordan. I will update the website when we know his results.
Love,
Karen
Monday, August 8, 2005 10:16 AM CDT
Hello everyone, I'm happy to report that we are all enjoying a BUSY, but "normal", fun summer. Rhode Island was great and now we're home just enjoying being home. The Eastern Little League Regionals have started and the boys are working down at the field again this year so we won't see them very much for the next week.
Jordan is feeling good. His next scans will be done at the end of August at Sloan Kettering right before school starts. We of course continue to ask that you say a prayer for him that he remains cancer free. Thanks for checking in on Jordan.
Love,
Karen
Wednesday, July 20, 2005 10:00 AM CDT
Hi everyone,
We got home late Sunday night from Jordan's make-a-wish adventure. The whole family had a wonderful time, but it really was Jordan's dream come true. He was on the motocross track from 8am-7pm for 5 days straight. He was in heaven!! The people in Virginia were amazing and I'm sure we have made some lifelong friends. The Gary Bailey motocross school was a beautiful place for Jordan to ride. The people in his class ranged from 9 years old to adult. There was even a mom taking the class with her family, so that sparked some conversation in our family. I told them to forget it.....you're not getting me out there. (especially knowing they had found a 4ft. black snake out on the trails at one point.....no way!!) Jordan was featured in 2 newspaper articles while we were in Virginia so we have some wonderful keepsakes of his trip...along with all the motocross gear he was presented with. Let's just say he won't be needing much for quite awhile. His room will be looking like a motocross shrine when he's done decorating it with the autographed jerseys from some of his favorite pro riders that he was presented with. Jordan was completely overwhelmed by the whole experience and is very thankful to Make-a-Wish and Gary Bailey's Motocross school for making his dream come true.......and then some!! THANK YOU!!
Love,
Karen
Thursday, July 7, 2005 11:50 PM CDT
Hi everyone, The wish granters from Make-a-Wish came to visit us tonight with the final details for Jordan's trip to Gary Bailey's Motocross Camp. Jordan is very excited and so are the people down in Virginia. Apparently not alot of kids request to go there so they are thrilled to grant Jordan's wish. Gary Bailey himself called Make-a-Wish to let them know he's looking forward to meeting Jordan and teaching him some new moves on his dirtbike. They spoiled him ridiculously tonight by giving him new motocross gear and a bag to carry everything. He was thrilled!
Jordan is feeling great. I'm very glad we waited until this point to do his make-a-wish. Last summer he would have definitely been too weak and tired to tolerate such an adventure. We'll let you know all about it.
Thanks for checking on Jordan.
Love,
Karen
Friday, June 17, 2005 8:14 AM CDT
Sorry for not writing for a while....busy, busy, busy!! All is well with everyone in the Marquis home. The last day of school is Monday. Jordan will be graduating from 8th grade and heading off to Bristol Eastern High School next year. I'm not sure how that is possible since it seems like Bob and I were just there ourselves last week, but oh well! He is looking forward to his 8th grade dance tonight to kick off the celebration.
Anyway, our big news is that we've heard back from Make-a-Wish. I was getting nervous because they said we'd hear from them in 2 weeks, but it took 4 weeks for them to get back to us because they had to check with the national headquaters for final approval of his wish, but they got it....Jordan will be going to one of the top motocross camps in the country this summer for a week. He is very,very excited! Thank you Make-a-Wish...( I think?!!)
Thanks for checking on Jordan.
Love,
Karen
Friday, May 27, 2005 9:46 AM CDT
Happy Memorial Day Weekend everyone! Good news.....Dr Kushner called to tell us Jordan's scans are CLEAR!!! Thank you for all of the prayers being sent his way. They are definitely working. The bad news is is that Jordan apparently has a touch of pneumonia which they picked up on the PET scan. Dr Kushner suggested following up with Dr Gillan, so we spent yesterday in Hartford at CCMC visiting with Dr Gillan and Emily, our favorite nurse practitioner. They did chest xrays and pulmonary function tests. Basically Jordan is asymptomatic....no fever, no cough or pain, but he does get short of breath with activity, so he has to do some breathing exercises and we'll check back in with Dr Gillan in a couple of weeks.
No news yet from make-a-wish, but we should hear soon.
Have a great weekend.
Love,
Karen
Tuesday, May 24, 2005 8:15 AM CDT
Hi everyone, Jordan and Bob are on their way to New York for his next set of scans. They have an appt. with Dr Kushner at 9:00am and then his CT and PET scan will follow. Keep those prayers coming for clear scans!!
The Make-a Wish visit was fun. Two volunteers came out and visited with us for a couple of hours and brought gifts for all of the kids which was a wonderful surprise. They asked Jordan lots of questions about himself and the wishes he had decided upon. They told him to have a number one wish picked out with 2 back up wishes just in case they couldn't grant the first. His first wish is to go to a motocross camp, the second is to go to the Summer X Games in Los Angeles and third is a shopping spree at an outdoor sporting goods store. Do you see a trend here? All his wishes are about dirtbikes! Again, I don't see any wish here about taking his parents on a cruise to somewhere with sparkling turquoise water.......kids these days!!!
Alright, as always, I will let you know the results of the scans as soon as we hear. Keep those fingers crossed and the prayers coming.
Love,
Karen
Saturday, May 7, 2005 2:04 PM CDT
Hi everyone,
We found out yesterday that the wonderful man who created the www.DSRCT.com website last spring to keep all of the patients and families affected by DSRCT connected, passed away on 05/05/05. His name was Patrick Scranton and he had fought his battle with this cancer for just over 2 years. Before Patrick developed his website, it was very difficult to find out info on DSRCT. Now for over a year, we've had this wonderful place to go to to see how everyone is doing, what treatments are having the most promising results and what things help to make the treatments more tolerable. Newly diagnosed patients can contact people for advice and support. This is so great because they can hear from patients who are doing well....even years after diagnosis....which is so amazingly reassuring because when Jordan was first diagnosed, we heard nothing positive. All we heard about initially was how aggressive and rare this cancer was and that he would only have a 20% chance of surviving. We were devastated!! Soon after that we were put in contact with Beth Orgel, a woman who's oldest son, Greg, had been diagnosed 3 years earlier at age 13 and was doing extremely well. She became our support system and cheerleader. Thank goodness for Beth and all of her knowledge and wisdom!!! She helped us so much during those initial months and now, thanks to Patrick, all DSRCT patients can find help easily just by clicking onto his website.
Anyway, I just wanted to send our condolences out to Patrick's family and to thank them again for this truly amazing gift he has left us with. Our prayers are with them.
Love,
Karen
PS On a lighter note....Jordan is doing well. His next scans have been booked for the end of May at Sloan Kettering. He is having his visit with the gang from Make-a-Wish on Friday and he's excited to see what they have to say. We'll let you know how it goes.
I again ask that you please pray for Jordan's scans to come back clear, especially after this latest loss. Thank you.
Wednesday, April 20, 2005 8:23 AM CDT
Hi everyone,
Jordan is enjoying his April vacation. The temperature has been in the 70's for over a week now and it's supposed to hit the mid 80's today which is very strange for this time of year. Jordan is feeling great and has been constantly outside. The kids are a little disappointed not to have an exciting trip to look forward to like our trip to Disney last year at this time, but I told them to look at the bright side. Last April vacaton, Jordan was completely bald, skinny and still had radiation, stem cell rescue and oral chemo ahead of him. This year, he has all of that behind him, his hair is spiked an inch and a half off his head, he feels strong and energetic (sometimes too engergetic!!) and things are just about back to how they were before Jordan was diagnosed. I'll take this year's scenario over last year's, thanks! The kids agreed! What a difference a year can make.
To all of the new people recently added to the www.DSRCT site, remember to stay strong and positive. There are many DSRCT patients out there doing amazingly well...focus on that. We will keep you in our thoughts and prayers.
Love,
Karen
Monday, April 4, 2005 8:12 PM CDT
Hi everyone, Jordan had his first visit with Dr Gillan since she's returned from Iraq. She was very happy to see how well he is doing. He has grown 2 inches and gained 7 lbs. since she last saw him 6 months ago. Jordan will have his next set of scans in May, most likely at Sloan Kettering.
He was glad he finally had the chance to ask Dr Gillan if he could get his ear pierced again now that he has finished his chemo. (we caved in and let him get his ear pierced the day after he was diagnosed because he had been wanting it done for so long. Unfortunately, once he started the chemo he had to take it out because his ear turned purple) Dr Gillan said it was fine with her as long as he promised not to pierce anything else....ever! :) We are trying to stall him until his 8th grade graduation (which is only 3 months away) because that was the original date we had planned on way back when when he first started talking about it in 6th grade.
Now that he is feeling so much better and stronger than he did last year, he is trying to decide on his make-a-wish. Right now he is leaning towards attending a motocross camp this summer. We will be contacting them soon to get the whole process started and we'll see what they say.
Thanks for checking in on Jordan.
Love,
Karen
Saturday, March 12, 2005 6:39 AM CST
Hi everyone,
Jordan continues to do amazingly well. Dr Kushner's office called yesterday and told us Jordan doesn't need to take Bactrim anymore. He was very happy to hear that because he hated how it tasted. His number of daily medications has greatly decreased since last year. When we went to Disney last April I had to carry a separate carry on bag with all of his medicine and supplies. What a difference a year makes! Since he finished his chemo he hasn't needed his Procrit injections and they've stopped his weekly bloodwork as well. HELLOOOO!!!! How am I supposed to keep my nursing skills up???? Just kidding! We are so lucky that he has had such a miraculous response to his treatment and we pray that it continues to go that way for a long, long time.
Dr Gillan has returned from Iraq and we look forward to seeing her in a few weeks. The oncology department at CCMC is having a screening of "ROBOTS" for all of their patients and families next Saturday, so maybe we will see her there.
Thanks for checking on Jordan.
Take care,
Love,
Karen
Friday, February 25, 2005 8:23 AM CST
Great news!!! Dr Kushner's office called to let us know that both of Jordan's scans came back clear...no evidence of disease! Whewwwww......we can breathe for another 3 months.
Have a wonderful weekend.
Love,
Karen
Wednesday, February 23, 2005 7:14 AM CST
Hello,
Well, the boys are back from their visit to New York and so far, the news is very good. The results from the CT scan are negative! Now we just have to wait for the PET scan results. Dr Kushner was very, very happy with how great Jordan looks and feels and especially with how well he has tolerated the treatment for DSRCT. He knows it was a long, painful road, but all in all, Jordan did great. Dr Kushner brought him to see Dr LaQuaglia and Jord gave them both thank you cards and pictures of himself on his dirtbike that we took a couple of days ago. They said he is a perfect role model for kids with cancer. Wow! What a difference a year makes.....last year at this time Jordan was only days away from his 8 hour surgery, so very sick, bald, skinny..... and today he is deciding where he wants to go snowboarding! Thank you God!!
PET scan results should be in today or tomorrow, so we'll let you know when we know. Keep those prayers coming!
Love,
Karen
Sunday, February 20, 2005 3:33 PM CST
Hi everyone,
We had a great time in Vermont last weekend....perfect weather for our sleigh ride. Jordan and Matt agreed to put the snowboarding on hold for the time being, but we had to promise that we'd take them at least once during February vacation.
We were planning on all 6 of us heading to NY today to have some fun in the city before Jordan's visit with Dr Kushner and his next set of scans, but unfortunately that plan had to change a bit. Emily, Zach and I are sick again, so Bob, Jordan and Matt headed off without us. I wanted to be there to thank Dr Kushner and Dr LaQuaglia again for all they have done for Jordan, but the fear of exposing all of those immuno-compromised kids to more germs prevents me from doing that. I know when Jordan's counts were really low last year, I wanted to flip out when someone coughed, sneezed or wheezed near him. We still walk around with Purell in our pockets! I'm sure Bob and Jordan will do a great job of expressing our gratitude to them. Jordan continues to feel great and was looking forward to going back to New York although he was upset we couldn't all go as planned. What a sweetie!
Please say an extra prayer for Jordan's scans to come back clear again! I will let you know how everything went as soon as we hear anything.
Love,
Karen
Thursday, February 10, 2005 8:00 PM CST
Hi everyone,
Well we have passed another milestone. Last night Jordan received his last dose of the oral chemo that he has been taking for the past six months. Yippee!! As I mentioned in my last entry, he has an appointment with Dr Kushner in a couple of weeks, so we will see what his plan will be for Jordo at that point. I am guessing if Jordan's scans come back clear again (please,please!!!) he will just continue doing scans every 3 months. I know Jordan would appreciate a decrease in the frequency of blood draws as well although I myself have enjoyed keeping my skills up in that area.....I haven't missed yet! (knock on wood!!)
Jordan is feeling great and hoping to go snowboarding in Vermont this weekend. Bob and I were thinking more of a nice leisurely sleigh ride through the snow covered woods so we'll see who wins! I must admit I've turned into a bit of a pushover ever since going through this whole experience with Jordan so he may just get his way although the fear of more broken bones and a trip to the ER keeps flashing through my mind.....we'll see.
Best wishes to all and as always....thanks for checking on Jordan.
Love,
Karen
Wednesday, January 26, 2005 7:58 PM CST
Alright already.....so it's been over a month since we've updated. You should all take that as a good sign! I'm happy to say that there hasn't been anything new to report about Jordan's medical status since I wrote last. Jordan did have two doctor's visits today and they are very happy with how wonderful he is doing. His radiology oncologist hasn't seen him in 6 months so she was thrilled to see him with a full head of hair. He also saw Emily, Dr Gillan's nurse practitioner, who told us that Dr Gillan is back in the United States and should be back at the Children's hospital for Jordan's next appointment in February.
Jordan is presently in the middle of his 6th round of the oral chemo, VP-16. He was nauseated a few nights ago and will get more tired the closer he gets to the end of the cycle as his counts drop, but all in all he has tolerated the oral chemo very well.
He has an appointment in NYC at Memorial Sloan Kettering at the end of February. He will be having his next round of scans done there and a follow up visit with Dr Kushner. Please say a prayer that the scans are clear again. My Gramma Sophie passed away a week ago so we know we have a new angel watching over him.
Thanks for checking on Jordan!
Love,
Karen
Wednesday, December 22, 2004 9:04 AM CST
Happy Holidays Everyone! All is well at the Marquis home this year. Jordan's weekly bloodwork has been coming back fine so he just started his 5th round of the oral chemo, VP-16. His next visit with the oncologist is Monday Dec 27th which just also happens to be his 14th birthday. I'm sure he'll be just thrilled when I'm waking him up nice and early on the first day of his vacation to go to that appointment! Happy Birthday Jordo!!
Alright, I have to go finish writing out the Christmas cards....better late than never!
Best wishes for a safe and happy holiday!
Love,
Karen
Wednesday, December 1, 2004 4:02 PM CST
Well it looks like we are off to a great start for the holiday season. Jordan had his CT and PET scans done the day after Thanksgiving and we just received news that the PET scan and the "preliminary" reports on the CT scan have come back CLEAR!!!! Yeah!! We are very happy and are on our way out the door for a celebratory dinner. (you know anytime I can work a nice dinner out into our schedule I do it!) Just wanted to share the good news.
Thanks for checking in on Jordan.
Love,
Karen, Bob and Jordan
Thursday, November 18, 2004 9:08 AM CST
Hi everyone,
Sorry about the big lapse in time since I've last updated the webpage. The good news is there has been nothing much to report until this point. Jordan had a great time trick or treating with his friends and has been attending school and is doing a great job with his classes. With this last round of oral chemo he was feeling pretty wiped out, his headaches came back and he was very pale. Last week he spent a day at the hospital and received a blood transfusion of 2 units of blood and is feeling much, much better. We will be getting his blood tests back today to see if he is ready to start his 4th round of the chemo. At the end of the month he will have a repeat CT scan and PET scan so please keep him in your prayers that his scans come back clear again.
Thanks for checking in on Jordan!
Love,
Karen
Tuesday, October 12, 2004 4:15 PM CDT
Hi everyone,
Well it was wonderful to escape for a long weekend to Vermont...even if the sun failed to follow us up north! It was cold and cloudy for alot of our stay, but we managed to have some fun anyway. A little fishing, dirtbiking, hiking, shopping and eating....something for everyone. The leaves were gorgeous and we were thrilled to be able to keep our tradition of going to Vermont for Columbus Day weekend this year. Last year we were in a state of shock after learning of Jordan's diagnosis and ended up cancelling our much anticipated yearly trip. Dr Gillan said we should have gone anyway, but I wasn't that confidant with Jordan's 3 day old Hickman catheter yet and we definitely weren't in the mood for leaf peeping anyway! Jordan was a little pale on this trip and he tired easier than normal, but he still had fun. He is back on both Neupogen and Procrit in hopes of getting his WBC and Hgb/Hct back on the upswing. Poor thing is now getting one or two shots everyday for the next week and then, hopefully, his ANC (the # they watch to decide how resistant he is to infection) will be back up so we can start his 3rd round of the oral chemo. One of the other mom's told me the oral chemo has a cumulative effect so it is unfortunate that we are entering the cold and flu season while he will be taking it. If he was already symptomatic after the second round, I'm a little worried about how he'll tolerate the next 4 rounds. He won't be done with his chemo until February or March. He is going in for his flu shot next week, so hopefully with that plus lots of handwashing, Lysol and Purell, he will make it through without any complications. Keep those fingers crossed.
Thanks for checking in on Jordan!
Love,
Karen
Friday, October 1, 2004 7:02 PM CDT
Hi everyone, Sorry about the length of time between updates. I tried to write earlier, but there was something wrong with the site. Anyway...Jordan had his last visit for awhile with Dr Gillan. She leaves for Iraq next Friday. Everyone please say an extra prayer for her safe and quick return. As Dr Gillan leaves to care for all of the soldiers fighting in Iraq, we thank her for helping Jordan fight for his life during this past year. October 7th is the one year mark of the day we learned Jordan had cancer. At that point they thought it was Lymphoma and were extremely optimistic in their prognosis. On October 10th, 2 days after his biopsy and hickman cath insertion, we learned of his true diagnosis, DSRCT. We have been on a roller coaster ride ever since, but with the care of such a wonderful oncology team and the support of such great family and friends we have reached the one year mark. Jordan looks great! You would NEVER be able to pick him out of the crowd as being the kid with cancer. He is very much enjoying being back with his friends at school. I'd have to say he is just a normal, obnoxious teenager again and I thank God everyday that he is here causing complete havoc in the house if the mood strikes him! OK, maybe I'm exaggerating just a tad....most of the time he is his usual sweet, kind self, but once in awhile, like if he has homework when one of his shows is on or if he hears the word "no" too much, then his evil twin returns. I'm pretty sure this has nothing to do with his oral chemo regime either! I think it's just due to the fact that he is almost 14.... Bob and I would appreciate a few prayers for ourselves at this time as well!
Have a great weekend.
Love,
Karen
Thursday, September 16, 2004 10:12 AM CDT
Hi everyone,
Just a quick note to update you and let you know that Jordan tolerated his hickman catheter removal just fine. He went into surgery at 2:15pm and they were ready to discharge him from the recovery room shortly after 3:00pm. The highlight of the day was getting a visit from his favorite PCA on the 8th floor, Lucy. She came down to see him before surgery and had a "little" present waiting for him when he got out....a big stuffed cheetah, bigger than our dog Sadie. Thanks Lucy, Karina and Kristin!
Jordan went back to school yesterday. He's a little sore, but otherwise fine. The hardest part will be keeping him from riding any bikes or scooters, not to mention his dirtbike for the next week.
Thanks for checking in.
Love,
Karen
Friday, September 3, 2004 10:10 AM CDT
Oh thank God for this caring bridge journal!! Not only does it help me to collect my thoughts and keep all of the goings on of this crazy family documented (which will come in very handy when my senility becomes even more advanced than it already is)....BUT it also provides us with a great gift of laughter as we read some of the hilarious entries from our friends and family in the guest book. Of course just knowing that people still check in to see how Jordan is doing and leave him messages of encouragement touches our hearts as well! THANK YOU EVERYBODY!!
Jordan is really enjoying being back to school. He has been pointing out all of my gray hairs over the past year (which of course he is to blame for most of them!) and I think it's getting grayer trying to adjust to having 4 kids all on different schedules. What were we thinking spacing them so far apart??
Jordan's surgery date has been apparently changed to Sept 14th. I say apparently because when he went in for his pre-op check yesterday, Dr Gillan just happened to call over to surgery to ask them a question and they told her his date was not next Wednesday as we thought, it was now the 14th. How nice of someone to let us know! Annoying!! Oh well...what can you do? I don't think they realize that what is just one little change to them has a very big affect on alot of people. (Yes my lovely sister Amy, I am whining again!!)
Hope everybody has a happy and safe weekend.
Love,
Karen
Wednesday, August 25, 2004 8:00 AM CDT
Hi everyone,
We had a great time in Rhode Island. The weather was perfect for about 75% of the trip....not bad!! We went to the beach, Mystic Aquarium and lots of good restaurants....we're trying to fatten Jordan up since he is still hovering just under 100 lbs. Bob and I seem to be doing just fine in the weight gaining department! I guess we should stop trying to be such good role models for Jordan. Our trip was only for 4 days, but with luggage for 6 people, beach equipment and all of Jordan's supplies (medicines, flushes, dressing kits...)it looked like we were going away for a month! You never know what you'll need, right?? School starts Monday, so we'll be busy running around getting the last minute things done this week.
That's all for now.....
Love,
Karen
PS People have been asking us to update the pictures, so I promise to work on this.
Thursday, August 19, 2004 1:46 PM CDT
Hello everyone,
Jordan had an appointment with Dr Gillan on Tuesday and she said he looks great. September 8th is the tentative date to have his port removed. Jordan can not wait to have it out even though he'll have to be stuck for all of his bloodwork afterwards. He said he doesn't care!
Dr Gillan is not only a wonderful oncologist and mother of 4,(3 boys and a girl) but she also holds some high up rank in the army. Unfortunately, they have called her to active duty and she will be leaving for Baghdad in October. She was supposed to leave in June, but she also runs Paul Newman's Hole in the Wall Gang camp in Ashford for all of the immunosuppressed kids every summer, so she postponed leaving for 4 months. We are very sad to see her go and we pray for her safe return.
We are busily packing for our getaway to the beach and hoping the sun decides to come out and stay awhile. I want the kids to have a great vacation! I can't believe the summer is almost over. Everyone is looking forward to the start of school, especially Jordan, although he's been enjoying the summer and just being a normal kid.
Take care and thanks for checking in.
Love,
Karen
Saturday, August 7, 2004 8:06 AM CDT
Hi everyone,
Only good news today......results are back from Jordan's CT scan and PET scan and Dr Kushner said they were all clear! We are thrilled! He will have scans every 3 months. Oral chemo starts on Monday and the plan is to continue for 6 months. Beth (Greg's mom) said this will not be as bad as the initial rounds of chemo, but his hair may get thinner, nausea is common, sometimes vomitting and he will be tired. Greg was able to go to school through his treatment so hopefully Jordan will tolerate the new chemo just as well. He is really looking forward to returning to school....only 23 more days. I think I will miss him terribly after being with him all day, everyday for the last year....HOWEVER....he's feeling much better and quickly returning to his pre-cancer "I'm a teenager and I know everything" attitude, so a little separation may be a good thing!
His cast came off on Thursday and he celebrated by riding his dirtbike all day Friday. Not my choice of activity, but I'm just the mother!
The Little League Eastern Regionals have started and Jordan and Matthew will be working there for the next week. Jordan had alot of fun working there last year. When he was diagnosed last October and we heard the prognosis, I never would've imagined he would be well enough to be back working at the regionals and having fun with his friends. I think a large part of his amazing response to treatment up to this point (besides the great care he has received) has been due to his positive attitude and the enormous amount of prayers that have been said on his behalf. Thank you so much!
Love,
Karen
Saturday, July 24, 2004 7:45 AM CDT
Hi everyone,
We have had a nice quiet week if you don't count the tree falling on the house last night. We only had one trip into Hartford to see Jordan's radiologist, one blood draw and best of all, his platellets seem to be coming back so he hasn't needed a transfusion in over a week. Yippee!!!! Jordan is enjoying the good point he is at. I haven't seen him that much because he's been out hanging around with his friends.
My friend Lynn M. who works for Nike (I'm sure you've read her witty entries on the bridge) made a donation to the Lance Armstrong Foundation and in return received a box of yellow bracelets that say "LIVE STRONG" which is Lance's mantra. If you've seen him racing in the Tour de France, you can see that he has one of the bracelets on. We kept some for Jordan's family and friends and then brought the rest up to the Children's hospital to share with the other kids battling cancer. They loved them, so THANK YOU LYNN!!! Ever since we started wearing the bracelets, we've noticed people everywhere have them on. If you would like more info on the bracelets go to wearyellow.com
Take care and thanks for checking on Jordan!
Love,
Karen
Tuesday, July 13, 2004 1:13 PM CDT
Hi everyone, Sorry I haven't written for awhile.... been a little busy and our computer has been down. Looking back at the site, I can't believe I haven't written in almost 2 weeks. The last thing I said was I wish everyone a safe 4th of July weekend. Apparently I forgot to include my children in that wish!! Jordan fell off of his scooter (not even his electric one) and broke his hand. He had on a red cast for the past 10 days, but that was changed to an orange one today. We thought he would be put into a brace today because they didn't actually see a break on the intitial XRAY, but they casted him more for comfort. HOWEVER.....when they redid his XRAY today, the break showed up just fine!! He will be in this cast until Aug 5th. His casts are waterproof so he can still swim and shower. Thank God because if we had to cover that cast as well as the port in his chest, we might as well just wrap the boy in a plastic bubble and be done with it. So now we can add orthopedic visits to our agenda. I'm guessing I should have my own private parking spot at CCMC very soon.
Miss Emily couldn't be left out.....she dropped a 5lb weight on her toe the morning after Jordan fell. We taped her toe to the next one, put ice on it and gave her Motrin. She was up and dancing around in a matter of minutes. Her toe looks just lovely now that the purple hue has faded.
Other than that, not much going on here. Jordan has still been receiving 2-3 platellet transfusions a week in Hartford. His legs are black and blue from just normal playing and fooling around with his friends. He feels good though, less tired, less GI problems. He still can't wait to ride his dirtbike.....I guess those plans will be on hold for a bit longer now. Poor Jord!!
Next CT scan and PET scan will be done at Sloan Kettering at the end of July.
Thanks for checking in.
Love,
Karen
PS Mikey, the boy I asked you to keep in your prayers, did very well with his surgery in NYC.
Thursday, July 1, 2004 9:01 AM CDT
Hello everyone,
First of all before I update you on Jordan, I would like to ask everyone to say a special prayer of healing for a 15yo boy named Mikey who is battling the same cancer as Jordan and Greg. He just had his big surgery in New York with Dr LaQuaglia yesterday so let's pray for a speedy recovery. He and Jordan are the only people in Connecticut with DSRCT. They were both at Sloan Kettering on Tuesday and were able to meet and talk for a few minutes.
Jordan tolerated the stem cell rescue pretty well. He said while Dr Kushner was doing the procedure it felt like his neck was frozen and being stabbed with knives and that he had a hard time breathing for a little while, but that all passed quickly. He did get sick once, but Dr Kushner said all of those reactions were normal. The feeling he experianced was due to the cold stem cells being infused directly his heart. He was able to go home about 4 hours after the procedure was done. We visited the doctor at CCMC yesterday and he said Jordan looks great. We will have to continue monitoring his blood counts at least twice a week and transfuse as needed, but he feels good except for the GI side effects from radiation and chemo. He's chomping at the bit to ride his dirtbike, but Dr Gillan said absolutely not until his platellets are back up near 100,000 (which hasn't happened for weeks) Hopefully soon now that the stem cells are in. Hope everyone has a great 4th of July holiday. Stay safe!
Love,
Karen
Monday, June 28, 2004 8:38 PM CDT
Hello,
Jordan has completed another phase of this journey. His 30 radiation treatments are done!!!!! Tomorrow he will be in NYC at Memorial Sloan Kettering for his stem cell rescue. This is supposed to be a relatively quick procedure and Dr Kushner said he could possibly come home the same day, so we hope it goes as smoothly as it can.
Jordan is still being tutored until the end of July and he will then be ready to start 8th grade with his class on August 30th. He is feeling pretty good, although it's been a battle over the last 2 weeks to keep his platellet count up. He has had a platellet transfusion every other day and 1 blood transfusion. Dr Bertsch (radiology oncologist) said he will probably need at least 2 transfusions a week until the end of July. I guess August will be the month for him to enjoy what's left of the summer.
Jordan and the whole family attended to first Relay for Life fundraiser in Bristol last weekend. We all had a great time. Jordan helped carry the banner during the survivor's lap while the song "Wind Beneath My Wings" was played. It was very emotional....not a dry eye to be seen. Even though there wasn't a huge turn out, the American Cancer Society was able to raise over $24,000.00 so that was great!
We will let you know how the visit to Sloan Kettering goes. Thank you to all who continue to send your good wishes to Jordan. Knowing people still, after all of these months, keep him in their thoughts and prayers means more than we can say. It is your support that has given us the strength to endure these difficult months. We thank you again!
Love,
Karen, Bob and Jordan
Thursday, June 17, 2004 9:47 PM CDT
Hi everyone, Sorry I haven't written for awhile.....the schedule we are on between radiation, doctor's visits, baseball and end of the school year activities has my head spinning a bit. Jordan is a little tired and continues to have some GI symptoms with the radiation. His platellets have dropped again, so we are going to CCMC in the morning for his second platellet transfusion in 3 days. Next week is his sixth and final week of radiation. He will be receiving one hour of chemo ( IV ) at CCMC each day after he gets his 5 final radiation treatments at Hartford hospital. I'm glad the hospitals are close to each other!! The following week we head to Memorial Sloan Kettering for his stem cell rescue.
We have a busy, but fun weekend coming up. Saturday, June 19th, we will be at the Relay for Life in Bristol. This is the first year Bristol has had this event take place here. Jordan plans on taking a lap around the track with the other cancer pts/survivors. It sounds like it will be a fun day.......DJ, face painting, clowns, etc. Lots of things for the kids to do. We are hoping to form a team for next year after Jordan is done with his treatment and stay for the whole 24 hour event. Any volunteers for the night shift laps?????
On Sunday we are going to the New Britain Rock Cats game. The Northeast Middle School's National Junior Honor Society is sponsoring the event and Jordan has been asked to throw out the first pitch. How fun!
Thanks for checking on Jordan!!
Love,
Karen
Tuesday, June 8, 2004 6:59 AM CDT
Hi everyone,
Nothing new to really report. Jordan continues to do well with the radiation treatments. He is feeling tired, but that's the only difference he really minds. He has started playing baseball again and is enjoying it although he says he's not as fast as he used to be. How could he be after all he's been through???? We try to remind him of that and tell him to just go have fun!! I thought he broke his finger on Saturday at practice because when he came home it was purple and swollen, but with a little ice it was much better. His platellets were only 60,000 so I guess that didn't help!! I did his bloodwork again yesterday, so we'll see where he's at today. He may need platellets this week. Today we have doctor's appts. after radiation,for Jordan (just a follow up) and then Emily has to have an ultrasound to make sure her kidney is still working perfectly (she had surgery when she was a baby) and then we have to see her urologist. Hopefully these will be quick, in and out appts.
Thanks for checking on Jordan.
Love,
Karen
Saturday, May 29, 2004 8:00 AM CDT
Hi everyone,
Jordan is doing very well with radiation so far. He has completed 10 sessions already so that means he only has 20 to go. He has been more tired this week and the diarrhea they have warned us about has started, but other than that his is tolerating it just fine. They have also told us he may need blood transfusions or platellets during radiation, but so far his blood counts are staying up. We saw Dr Gillan on Thursday and she is happy with how well he is doing. She wants him to gain some more weight. Right now he is 101 lbs. and last year he was 104 lbs. so I don't think that is too bad, HOWEVER, if he needs a few more trips to Friendly's then I guess I'm just the girl to bring him there!
Hope everyone has a fun and safe Memorial Day Weekend!
Love,
Karen
Friday, May 21, 2004 3:22 PM CDT
Hi everyone,
Jordan just finished his first week of radiation and he is feeling great. No side effects so far, but they are apparently "cumulative" so they may start adding up and beginning to surface by next week. (like fatigue and GI symptoms) The staff in the radiology/oncology department is great and a bit infatuated with Miss Emily and Mr Zach. They are constantly giving them candy,cookies and taking walks to the different areas of the department to keep them entertained. I think they'll be a little sad when the six weeks are over. Enjoy the weekend.
Love,
Karen
Friday, May 14, 2004 4:50 PM CDT
Hello,
Today we met with Dr Berstch and her team in the radiology/oncology department. She is very nice and very energetic!! She said that they decided to do 30 radiation treatments for Jordan. 20 over the entire abdomen and pelvic region and then an additional 10 over the area where the only tumor that still had living microscopic cancer cells was located. (all other tumors removed during his surgery were dead from the chemo!!) Side effects don't sound very fun.....nausea, diarrhea, exhaustion, low blood counts, burns on the skin....they say everyone responds differently so we'll have to wait and see which side effects bother Jordan. Some people have a terrible time and others do just fine. We'll see.....
Have a great weekend. Jordan plans on enjoying himself!! He'll be golfing on Saturday and fishing on Sunday.
Love,
Karen
Wednesday, May 12, 2004 12:09 AM CDT
Hi everyone, Well we are getting back into the swing of things after our vacation. Jordan has been working with his tutors and he has several doctors to see this week. Friday is our visit with Dr Bersch, the radiology oncologist at Hartford hospital. She will be giving us final plans and details for radiation to start on Monday. Jordan is feeling great. He's been spending alot time outside with his friends.
Tomorrow is Matthew's 10th birthday so......HAPPY BIRTHDAY MATTHEW!!
Thanks for checking in on Jordan.
Love,
Karen
Friday, May 7, 2004 8:48 PM CDT
Alright already......I've been lashed at left and right because I haven't updated the bridge since we got home 2 days ago. I was a little tired from tour directing my group of 20 around Disney World!! We all had a wonderful time...a little hectic at times, but all in all a fun, memorable vacation. We have owned a timeshare for awhile, but this was the first time we were able to stay in one in Orlando. It was just beautiful!
It rained a little more than we expected it to, but we just put our ponchos on (even Bokka, my 91y.o. grandfather) and carried on. Unfortunately, the kids didn't get much swimming in because of the evening thunderstorms. Thank goodness we had a jaccuzi tub in our room....we just filled that up and they swam around in that. We were able to visit the Magic Kingdom, Epcot, MGM and Animal Kingdom. The boys loved going on any rollercoaster kind of ride they could find. Emily loved meeting Cinderella and Bob even got to make a trip to the big Bass Pro Shop down there. EPCOT is my favorite. I love trying food in the different countries (of course!!) and it was their annual flower show, so there were gorgeous flower displays everywhere you looked.
Looking back on it, I know we had a good time because I actually forgot Jordan was sick for a little while. He kept up with everyone and was usually the first one complaining if we said it was time to head back to the hotel. That boy is tough!!
Thanks to everyone who wrote on the site while we were gone. It was fun to come back and see the humorous additions! You all might start seeing some new names on the guest book because a nice gentleman has started a new website for people with DSRCT and we have added Jordan (and Jordan's caring bridge address) to his website. It's a new place for anyone affected by this disease to go and share information about their treatments and experiences.
Thanks for checking in on Jordan and we wish all of the mothers a very happy Mother's Day!!
Love,
Karen
Thursday, April 29, 2004 11:07 AM CDT
Hi everyone,
Well, we saw Dr. Gillan yesterday and we got the final "green light" for Disney. We are very excited to be getting away from the craziness we've been living with for the last 6 months and are looking forward to just being away on vacation like a normal family. (for those of you who know us well, I don't want any comments on the bridge about the "normal" part!!) Thanks for all of your good luck wishes and we'll update you when we get back.
Love,
Karen
Saturday, April 24, 2004 9:31 AM CDT
Hi everybody,
Exciting news......the PET scan and CT scans results are in. No active disease seen which means no tumors. YIPPEEEE!!! Given the numbers and statistics we we were given back in October, this is amazing news. I know we still have a very long road to go before we are out of the woods, but this is definitely a wonderful way to start the next phase of the journey. Jordan will still receive radiation therapy followed by oral chemo for 6 months. Dr Gillan said a few weeks ago that "this may seem like beating a dead horse, but this is a very,very terrible type of cancer and we want to attack with everything we have" Just when I'm feeling good about things, she throws reality back at me to keep me grounded. ;( So anyway, we focus on today and the wonderful news we have just received and take tomorrow as it comes.
Jordan is having a great weekend. He unfortunately had to miss taking part in opening ceremonies for little league with his old teammates (the Cardinals) because he already had plans to attend a karate tournament at the Mohegan Sun with Uncle JP. How nice to have such problems like having to choose between two fun things happening at the same time. Hopefully he'll be able to go to a few Cardinal baseball games before the season ends.
We are thinking positively and going forward with our plans for Disney. Jordan had to go back to the hospital for platellets on Thursday and we have to repeat blood work on Monday because he may need another blood transfusion if his hemoglobin is down, but we'll see on Monday. He's feeling strong, eating well and the sores are gone so hopefully we'll be all set to leave on Thursday.
Have a great weekend and thanks for checking on Jordan.
Love,
Karen
Wednesday, April 21, 2004 8:10 AM CDT
Hello,
Just a quick update to let you know, Jordan came home last night. He is a little pale and tired, but very happy to be home. We have to go and do his bloodwork this morning because the doctors want to make sure his counts continue to head in the right direction. His scans yesterday went well. His "tattoos" are just little reddish dots on his belly. We have an appointment Friday morning with Dr Bertsch, the radiologist, and she will review all of the results from the scans then. Have a good day!
Love,
Karen
Monday, April 19, 2004 5:53 PM CDT
Hi everyone, Well.....we're still in the hospital, waiting for those white cells to come back so we can get out of here. Jordan hasn't had a fever since he was admitted and all of his cultures have been fine, but......once those doctors have the kids in the hospital, they're not too quick on releasing them until their counts are on the rise. Jordan is VERY bored and tired of being a patient. The nice nurses did disconnect him from his IV's and let him loose to walk around outside the hospital a few times, so that made him happy. Torrow he will be going over to Hartford Hospital to have a few different scans for the first time since the surgery. He will also be getting his tattoo markings in preparation for the radiation treatments. Nothing very exciting, just a series of dots so they know where to aim the radiation. (I thought I was being lenient letting him get his ear pierced,now he's getting tattoos......where is this heading???)
Hopefully, his counts will start rebounding soon and he can go home. Thanks for checking in on him and please say a prayer that we get great news from the scans. Enjoy the summer-like weather. It looks beautiful out there!!!
Love,
Karen
Thursday, April 15, 2004 3:55 PM CDT
Well, our Jordo was readmitted to the hospital last night. Although it's not unexpected, it's still disheartening for him since he's only been home for 3 days. Yesterday he had a headache that wouldn't quit and he could feel the sores coming back in his throat, so we knew his counts were probably zero. We also figured he was a little anemic since he didn't get a blood transfusion with the last round and we were hoping that a transfusion would cure his headache. So, we went in to see Dr Gillan and to check his counts. He received blood and was feeling better, but when they checked his temp as we were getting ready to go home, he spiked to over 101, so....... here we are. IV,blood cultures,antibiotics...the normal routine. Jordan is not happy at all to be back in the hospital, but he knows it's for the best. Besides, we have to get him "all better" quickly because we are going to Florida in 2 weeks!! We were supposed to go last October, but those plans were cancelled after Jordan was diagnosed. We were hoping to go this upcoming October, figuring by then he would be feeling up to it, but when we ran that idea by Dr Kushner in NYC he recommended going before radiation therapy starts because the side effects can last for almost a year, plus he'll be on oral chemo for 6 months after the stem cell transplant. So, we are going at the end of April for a much needed break! Hopefully Jordan follows the same road to recovery he's taken for the last 5 rounds of chemo because that would mean his counts will have returned to normal for more than a week before we leave and he'll be feeling good. Keep those fingers crossed!!
Alright, the king is asking for a head massage.(No,not Bob...Jordan) Hope everyone had a great holiday weekend. Thanks for checking on Jordan.
Love,
Karen
Saturday, April 10, 2004 9:47 PM CDT
Hi everyone, Well Jordan is home and he did very well with his 6th round of chemo. I think we timed it just right. His counts will still be high enough for him to be able to enjoy Easter with the whole gang!! Hope everyone has a wonderful and safe weekend. Thanks for checking on Jordan.
Love,
Karen
Monday, April 5, 2004 8:52 PM CDT
Hello,
Jordan has enjoyed his time home since his discharge from the hospital a few weeks ago. He has kept busy visiting friends in the neighborhood and working with his tutors. He had a few days of not feeling very well, but all in all, this was a great round!! And he made it through without being readmitted with a fever.....amazing!! Unfortunately, the time has already come for another round of chemo...his 6th and final round before radiation starts in May. He heads back in tomorrow morning for an echocardiogram at 8:30am and then a quick visit with Dr Gillan. We're hoping things go as smoothly with this round as they did with the last one.
Dr Gillan told us that the path reports from the surgery came back showing that all of the tumors removed were dead except for a small microscopic area on one. This is amazing news because we were told that normally, this type of cancer does not respond very well to chemo. Now we just pray that if there are any remaining cells lurking around, the final 2 rounds of chemo and radiation will take care of them. Way to go Jordan!! All of those prayers are definitely being heard, so we thank everyone who has been keeping Jordan in their prayers.
We'll keep you posted on how this next hospitalization goes. Thanks for checking on Jordan.
Love,
Karen
One last thing....a big thank you to the 4th graders at Edgewood School. They have been working on a special project for Jordan since December. They read a story about how if you give someone who is ill one thousand paper cranes, you surround them with healing power. Yesterday they presented Jordan with over 1200 oragami(sp) cranes. Every crane represents a wish for Jordan to get better. We are surrounded by a rainbow of healing love at our house!! Thanks Edgewood 4th graders!
Saturday, March 27, 2004 8:00am EST
Hi everyone,
Well... nothing new to really report. Jordan is still home with us. His WBC count is on the rise so he actually may have made it through this round without being readmitted. We have done blood tests, doctors visits and a platellet transfusion last week, but because he has remained fever free, the doctors kept letting him come back home even with zero counts. His red cells are on the low side, so on Monday morning at 8am we have to go to CCMC for a blood transfusion. He always receives blood when he is readmitted the week after chemo, so I would've been shocked if he made it through this round without needing one. He feels pretty good though, a little tired, but looking forward to spring and riding his dirtbike. It's only been 4 weeks since his surgery, but he bugs us everyday to ride....that won't be happening for a few more weeks. Maybe a quick zip around the yard but that's it. (Mean mother!! although I tend to think his surgeon would agree with me.) Everyone else seems to be on the mend as well, so maybe we'll actually get to do something fun this weekend.
Take care and thanks for checking on Jordan.
Love,
Karen
Sunday, March 21, 2004 2:00PM EST
Hi everybody,
I'm a little supersticious, so I'm knocking on wood as I write this....Jordan is still home! I know this probably doesn't sound impressive, but normally he would've been readmitted to CCMC by now. We will be walking on a tight rope for the rest of this week hoping he stays fever and pain free while his counts are down. Once his counts start to come back, he is usually in the clear. Unfortunately he is very bored because we are keeping him housebound for awhile. We are trying to limit his exposure to sick people although it probably would be healthier for him to get out of our house since all of us have colds except Bob. I'm thinking about buying stock in Lysol and Purell !! We will find out this week if the double ear infections have completely cleared up. Because of all this, we have not been able to see the newest addition to the family yet. (Yes John...our very LARGE family!) Julia Mary Dansereau was born on St Patrick's Day...the 11th grandchild on my side alone.
That's all the news for now.
Love,
Karen
Monday, March 15, 2004 6:48 AM CST
Hi everybody,
Just wanted to let you know Jordan is home. Hopefully he will remain fever free and keep those GI sores to a minimum (that hasn't happened in the past, but we can wish!) so he can stay home until his next round of chemo in April. He will be seeing his tutors again this week, something he is looking forward to. We were able to pry the PS2 controller out of his hand during this last hospitalization and he actually did some homework. With any luck, he will continue feeling well and keep on that track! Just saw on the news we are getting 4-6 inches tomorrow...I thought spring was just around the corner :(
Love, Karen
Saturday, March 13, 2004 9:38 AM CST
Hi everyone, Jordan is still in the hospital getting his 5th round of chemo, but so far so good, no side effects showing up just yet. He's been keeping busy by reading, playing play station and watching movies. It's actually nice to be back with our friends at CCMC...Dr Gillan, Lucy, Karina, Deana...everybody has become very close to us. We're very lucky to have such wonderful people taking care of Jordan.
Matthew, Zachary and Emily are doing well. Em and Zach both came down with double ear infections while we were in NYC and we went for a recheck this week. Not only do they both still have ear infections, but now Matt does as well. You'd never know it though...they're all still running around the house like maniacs, so that's good I guess. Never a dull moment....
They are telling us Jordan might be able to go home tomorrow....we'll keep you posted. Thanks for checking in on Jordo.
Love,
Karen
Wednesday, March 10, 2004 10:28 AM CST
Hello everyone, Just a quick update today. Jordan saw Dr LaQuaglia and Dr Kushner in NYC yesterday for a post-op visit and they are very happy with how well he is healing. He is doing so well that he is being readmitted today at CCMC in Hartford for his 5th round of chemo. We will see Dr Gillan in the clinic first and then go from there. He should be in for about 4-5 days. He has been a little sore this past week, but other than that he is feeling great. His appetite isn't quite back yet, but getting better. Auntie Kath brought over her special cheesecake for him last night and that seemed to go down just fine! Thanks for all the get well cards....and to the Cardinals, we thank you for the balloons and game. They arrived at the hospital about an hour before we were discharged...good timing once again!
Love,
Karen
Wednesday, March 3, 2004 9:29 AM CST
Hi everybody, Just a quick note to let you know WE ARE HOME!! We got back last night around 8pm. It was wonderful to drive in and see a big WELCOME HOME banner and balloons flying (thanks to our neighbors and Nanny) and to see the kids jumping up and down on the front porch with Grandma. Jordan is very happy to be home.
We have to go back to NYC for a post-op visit next Tuesday and I'm sure we'll be seeing Dr Gillan soon at CCMC for another round of chemo. For now, we will just enjoy being home and getting settled. Thanks to all who kept things running so smoothly at home while we were gone.
Love, Karen
Monday, March 1, 2004 10:01 PM CST
Hello all......Jordan had another pretty good day. He had a repeat chest xray today which showed his lung is improving. If he was a little more comfortable and eating more I'm sure he would have been discharged tonight, but since he still has periods of being very sore combined with the fact that his appetite hasn't completely returned, he bought himself another day here. Not a bad thing....Em and Zach are home with double ear infections (lucky Grandma) so I'm not in any hurry to get him home to that. Jordan has a little stubborn streak in him which I'm not sure where he gets that from... Terry mentioned something about the German and French in him, so maybe that's it. Anyway, he keeps going 7 or 8 hours without anything for pain because he says he feels fine "no pain" and he runs laps around the floor and goes to the family room. I try to tell him to take at least one pain pill every 4 to 6 hours to stay ahead of the pain, but who am I? Just his mother, oh yeah, and a nurse, so ya might think I know a LITTLE about this, but NO...he waits until he can barely move and then he wonders why the pills don't seem to help quick enough. My stubborn boy!!! He is sleeping right now though so I'm hoping he has a comfortable night...and we'll see what tomorow brings.
Love,
Karen
Sunday, February 29, 2004 3:44 PM CST
Well.... we've been kicked out of the executive suite. Jordan is now on the regular pediatric unit which is just as beautiful as the observation area he has been in. He is no longer needing oxygen, although his lung still needs a little more time to recover fully. He also had his catheter taken out today, so he is almost tubeless!! He has IVs still running, but those are attached to his chest port he came into the hospital with so that's not a big deal. Jordan feels a little more sore today which I'm sure is due to the fact that he ran around the unit 15X yesterday and has been using muscles to move around in bed that he doesn't normally use. Plus, they took away his IV pain medicine and he's now on pills so.....all of that together means a little more soreness today. He is still doing very well recovering from surgery and Dr Lal, Dr LaQuaglia's fellow, said Jordan would probably get to go home in a few days as long as his pain remains under control and his lung continues to improve. That's great news, but we were originally told to plan on being here for 14 days, so we made plans for the kids to come visit us in NYC with Grandma Dot at the halfway point which was to be Thursday morning. Those plans may have to be cancelled if he continues on the fast road to recovery, but that's quite alright....it'll be nice to be home. I just don't want him to be discharged too soon. We'll see Dr LaQuaglia tomorrow. He's very cautious and I'm sure he won't let Jordan go home until he's absolutely ready.
Nanny and Poppy just left. We all had a nice visit. They stayed with Jordan while Bob and I went out for lunch and then we all transferred him over to his new room together. Great to have those extra helping hands.
Well, that's all for now. Thanks for checking in on Jordan.
Love,
Karen
Saturday, February 28, 2004 4:03 PM CST
We are still in the observation unit. Jordan has developed atelectasis in a small area of his left lung, so he needs to stay on oxygen for a bit longer. The doctors told us this is a normal occurance sometimes after surgery... he just needs to keep moving around as well as he has been and continue with the coughing and deep breathing. We walked around and around the pediatric unit, stopped in the family room for some movies (Malibu's Most Wanted, Radio and Freddie vs Jason....I guess I'll have to go shopping or something when the last one is on) and now we're back in Jordan's room for a nap. He can eat regular food if he wants to, but he hasn't had much of an appetite. He did eat some jello and italian ice today. Pain wise he is doing pretty good unless he forgets to hold his belly when he coughs. He's not too happy when he does that. Also, today he finally took a peek at his incision. It goes from his chest to his pubic bone and actually I think it looks really good, but Jordo just thinks it looks OK. He is allergic to steristrips so instead of using those or staples, the doctor glued his incision closed. It looks like it will heal beautifully. Bob told him he could get a tatoo if he wanted, BUT... it has to be of a fisherman in a boat and his soon to be scar could be the fishing line in the pole, but Jord didn't seem too excited with that lame idea. I guess he'll pass.
Nanny and Poppy are coming to visit tomorrow, so that will be good for Jord to see different faces other than just ours for a change.
That's all for now..........
Love,
Karen
Friday, February 27, 2004 10:00 AM CST
Hello everyone,
Jordan is going to stay in the "executive suite" per Dr.LaQuaglia for one more day. He is receiving a blood transfusion and was put back on oxygen for shortness of breath. The doctors are still happy with his progress and think he'll be feeling "less winded" after the transfusion. Dr Kushner came to visit us last night. He was impressed with how well Jordan is doing and with his positive attitude.
Jordan,Karen and I took a walk to the next area he will be staying in. The unit is brand new and just opened in December...very colorful and cheerful. We also visted the family room where they keep all the fun stuff. While we were walking the halls, a news crew was doing a story about the new childrens floor. We never found out what channel they were from, but they told us we might be on last night's news. We wondered why all the nurses were running out of the nurse's station and hiding.
Thanks for the prayers and keep them comming!!
Love, Bob (and his editor)
Thursday, February 26, 2004 10:28 AM CST
Hi everyone, sorry it took so long for us to update the site. Jordan's surgery was from 10:15am until 5:00pm last night and went really well. DR LaQuaglia had an emergency case come in right after they finished Jordan's surgery,so we didn't get to talk to him until 8:30pm. He told us they were able to remove ALL of the tumors they could see!!! It was such a blessing to hear him tell us that!!!The plan will be a couple of weeks to recover and then back to CCMC for his 5th round of chemo. Right now Jordan is resting and is fairly comfortable, mostly sore when he moves. The nurses are going to help him get up for the first time in a few minutes...he asked last night if he could try but they said to wait until today!(I can only admire how tough of a kid he is) Bob
Hi guys, this is Karen....the nurses just helped Jordan get out of bed and they wanted him to just sit in a chair for awhile, but as I am writing this he is walking down the hall with Bob and his nurse. They seem a little surprised he is so willing to move so much especially on his first time up. We'll have to make sure he doesn't over do it. They took him off of oxygen last night, the A line came out this morning and the good news is his belly is already waking up so the NG tube is probably coming out this afternoon. He's already asking about his playstation, so all in all he is having a pretty good first day. I'm going to go see where they've gone off to....
We thanked Dr LaQuaglia when we saw him last night and he said "Don't thank me, thank the man upstairs" I said "well we thank him too, but it was definitely a team effort!" And speaking of teams.....yesterday morning as we were walking to the hospital for the surgery an 18 wheeler truck went by us with the word "CARDINALS" on it.....I don't know how that baseball team family of ours knew exactly when we'd be walking down the street, but Wow!! That was very impressive. You guys are good!! Seriously though, we saw that truck and we felt like the Cardinals were sending us a "we're thinking of you" message.
Thank you so much to everybody for being so kind and supportive to us since the beginning of this whole ordeal.
And as always.... thanks for checking in on Jordan.
Love,
Bob, Karen and Jordan
PS Jordan says hello and thanks to everyone for writing messages on his website
Tuesday, February 24, 2004 12:23 AM CST
Hi everyone, We arrived safe and sound in NYC yesterday afternoon, missed all the traffic and checked into the Ronald McDonald house by 4:30pm. After getting settled, we went for a long walk and ended up having dinner at a nice restaurant called O'Flannigans. The food was great and we had alot of fun... EXCEPT... Robert wasn't thrilled that there was a cat walking around in the restaurant. Well....at first he thought it was cute, but then it jumped onto the chair next to Jordan to join us for a bite to eat I guess and that was just a bit to much for Bob to take. He gave the cat a little nudge off the chair and that was the last time he came to visit us. (Lynn M.?? Is this a common occurence in the city or should we contact the health department??.....just kidding!)
Anyway....we went to Memorial Sloan Kettering this morning and met with the nurse practitioners and then Dr. LaQuaglia. After that,Jordan had some bloodwork done. We are back at the hotel and starting the prep work for tomorrow. Poor Jordo.....he can only have clear liquids all day and he's already complaining of being hungry and it's only 12:30pm. It might be a long day!!
Tomorrow, surgery is scheduled for 9:30am. We have to be at the hospital at 6:30am. They are planning on putting an epidural in for post-op pain management combined with a PCA (IV pain machine) so I'm really hoping the two together will keep him pretty comfortable. Dr LaQuaglia said the surgery can take anywhere from 6 - 10 hours, but he doesn't really like to give a time estimate ahead of time. He said "It will take as long as needed to do a good job"
Please say an extra prayer tonight for Jordan that he may have a successful surgery and an uneventful recovery period. We will try to update the bridge ASAP after the surgery to let everyone know how he made out.
Thanks again for checking in on him.
Love,
Karen,Bob and Jordan
Monday, February 16, 2004 7:44 AM CST
Hello everyone, Nothing new to report except Jordan visited Dr Gillan at the end of last week and he is doing great. Surgery is scheduled for the end of February and they have told us to plan on being in NYC for 14 days. Bob,Jordan and I will be leaving on the 23rd. The thought of being away from Matt, Zach and Em for that long is very difficult, but the boys can't miss that much of school. We are planning on letting them "skip" a few days at the end of the 2nd week so they can all come for a 3-4 day visit. Of course, this all depends on how Jordan is doing. This week all of the kids are off from school....except for Jordan. His tutors still plan on seeing him. I am happy about this, but he's not thrilled. Oh well....
As long as Jordan's counts remain OK and everyone is healthy, we are going away on Friday for a break before the surgery. Just a little weekend away to do something fun with just the 6 of us.
2 more days on the chicken pox countdown and we should be all clear. Thanks again for checking in on Jordan!!
Love,
Karen
Saturday, February 7, 2004 9:28 AM CST
Wow!!.....I can't believe we haven't updated the bridge in over a week. Sorry about that. We've been busy organizing our trip to NYC, cancelling the original plans, touching base with all of the doctors and social worker and catching up with Jordan's tutors. Jordan is just happy to be home and not in the hospital!! We saw Dr Gillan on Thursday. All is well, but she wants Jordan to gain some more weight back before the surgery. Darn!! A few extra trips to Friendly's I guess!!
We're getting down there on our Chicken Pox count down! If Emily, Zach or Jordan don't come down with them by the 18th then we are in the clear. Keep those fingers crossed!!
Nothing else to report......it's sort of nice to have a boring update for once!
Love,
Karen,Bob and Jordan
Friday, January 30, 2004 8:08 PM CST
Well, we have some good news...... after being in the hospital for the past 11 days (and 5 days the week before) Jordan was finally discharged today!!! We were told yesterday he could go home Saturday, but Jordan called early this morning and said "Guess who gets to come home today??" We're all so glad to be back under one roof tonight. Thank God he's home!!
We called Dr LaQuaglia's office earlier this week to let him know about the chicken pox exposure. He has post poned Jordan's surgery now 'til the end of February just to be cautious. We're now waiting to hear back from Dr Kushner, Jordan's oncologist in NYC, to see what he wants us to do between now and then. Maybe another round of chemo, maybe nothing but regaining some strength and weight in preparation for the surgery. We'll see......
Take care and have a great weekend!!
Love,
Karen
Wednesday, January 28, 2004 3:18 PM CST
Hello everyone,
Just wanted to let people know,Jordan's white blood cells are finally on the rise!!!!!!We still need to get 3 neg. blood cultures back before they will let us go home. One more to go.......at least we are heading in the right direction.
They told us last night that we could leave our room and walk around the floor, no more isolation for the possibility of him getting the chicken pox. Jordan was very excited and off we went around and around the unit.
Karen spoke with Dr LaQuaglia's nurse practitioner today to touch base with them about the chicken pox exposure. We should hear back from them tomorrow. It turns out the nurse practitioner use to work at CCMC and she knows Dr Gillan, Emily, our nurse practitioner and our favorite PCA, Lucy. It's a small world..........
Bob
Sunday, January 25, 2004 2:25 PM CST
Hello everyone..........We are still at the hospital. Jordan is pretty bummed to be in still... he wants to go home, but his WBC's are still hovering around zero. I'm guessing they should start climbing by Tuesday. He is feeling OK. The esophagitis bothers him when he hiccups,burps or eats something too bulky, but other than that he is feeling better. Matt has been very active and driving us crazy at home so we know he is feeling better too!! Let's all keep our fingers crossed that Jordan's counts start recovering..........I want to be home with him and the rest of the gang baking cookies and drinking hot chocolate when the snow comes this week, not zipping back and forth to Hartford. Take care and we'll keep you posted.
Love, Karen
Friday, January 23, 2004 12:44 AM CST
Hello....... Yes, Matt definitely has the chicken pox. He luckily has a mild case, so we are happy about that. Jodan had to get three shots yesterday (poor boy!!) of an immunoglobulin (VZIG) to keep his immunity up against the pox. They tell us he is now protected for 28 days which means that his surgery should still take place as scheduled for February. We got to visit with a doctor from the infectious disease dept. yesterday so we felt better after speaking with him.
Jordan is feeling much better today. This was a very rough week for him, but we are starting to see glimpses of our old Jordan shining through. His white count is still basically zero, but his pain is less and the nausea seems to be gone. (Thank God because he has lost 8lbs. in a week.) Today is the first day he has eaten a little something in 4 days, so hopefully we are on the upward swing.
A few days ago there was an article in the Hartford Courant about a doctor who was using acupuncture on kids with cancer to help with pain and nausea. I showed the article to Dr Gillan and guess who showed up yesterday afternoon to see Jord...... Dr Zempsky. He is really nice and we are looking forward to working with him.
Take care,
Karen,Bob and Jordan
Wednesday, January 21, 2004 5:25 PM CST
Hello everyone.... We had a great weekend, the whole family even went for a walk in the woods while it was snowing on Sunday. So pretty!! However, all that nice stuff has changed. Jordan ended up being readmitted to CCMC on Monday night at midnight for a fever and uncontrollable pain. The doctors have been able to help make him a little more comfortable with morphine, but now he is nauseated constantly and vomitting. The medicine to help with the nausea is making him extremely tired so if he's not throwing up, then he is sleeping. Fun,fun!! We have come to learn that the tough week is not "chemo week" it's the following week when his white blood cell count drops to zero leaving him susceptible to infection and the awful GI sores... so painful, which is where we are now. He was cheered up a little today with a visit by a golden retriever in his room. Apparently the hospital has 6 or 7 dogs that come one at a time to visit the kids to brighten their day. Of course, I happened to have my camera :) so I took a quick picture which I will put on the website if it prints out OK. Sadie dog will be so jealous!
Now, for some crazy news........Bob just called...... Matt may have the chicken pox. Can you believe it??? Matt had a pimple on his neck this am, but by this evening he apparently had a bunch on his belly and back. Bob took him to the pedi this evening and our pedi isn't 100% sure it's chicken pox, but his plan is to definitely err on the side of caution and treat him as if it is. (All the kids have had the vaccine, but it's still possible to get a mild case)He doesn't have a fever, sore throat, or anything, so it may also be an allergic reaction to a new detergent. (He's got sensitive skin like his father!) Sooooo....... I'm still with Jordan at the hospital and the doctors are finalizing their plans for the new meds they plan to put him on as a precaution. I'm a little freaked out right now, but the doctor has reassured me that it's OK and they'll be doing everything possible to keep Jordo healthy. She was happy to know he has had the vaccine already.
Well, I think that is enough news for now, more than enough really!!! Take care,
Karen,Bob and Jordan
Saturday, January 17, 2004 7:25 AM CST
Hi everyone.....well, good news.....Jordan was able to come home a day early because his mother is a crab!! I know, I know.... you're all saying "that's not true!!" but let me explain. I felt the need to complain to Dr Gillan the other day about waiting around Monday at the hospital for 10 hours before the chemo was started (which she wasn't aware of because she was not there that day) and she was not happy about that either. So, she said "We'll speed up the chemo by 2 hours a day and have him out a day earlier".... and it worked!! Jordan was home by yesterday afternoon ( and he didn't even mind it was the coldest day in 20 years!!) What's that saying? The squeaky wheel gets the oil.... I don't usually function by that rule, but I must admit, it did work!
We'd like to thank all of the people who have worked so hard on the fundraisers for Jordan. The most recent was held Thursday night at Nuchie's. Bob was very impressed with what he saw during his quick visit and we've heard nothing but wonderful things from people regarding the fundraisers. The outpouring of love and support from our families and friends and (and their families and friends....) has been overwhelming and greatly appreciated. As I've said before, because of your generosity, Bob and I have been able to be at Jordan's side as he makes this difficult journey without having to worry about silly things like monthly bills for the moment. Again we thank you from the bottom of our hearts for everything. I apologize to those who we have not personally thanked yet..... the thank you notes are coming. The hectic schedule we've been on with Jordan plus the craziness of normal everyday life with 4 kids combined with the fact that I am, unfortunately, a natural procrastinator does not equal up to anything done quickly! Thanks for your patience and understanding.
Hope everyone is staying warm and as always.... thanks for checking in on Jordan!!
Love, Karen
Wednesday, January 14, 2004 5:23 PM CST
Hello everyone............. Jordan isn't enjoying this round of chemo very much. So much for less nausea, poor thing. He got a migraine yesterday too, so that didn't help much. He did kick my butt in air hockey this evening so I know he is feeling a little bit better. I read the messages on this site to Jordan this afternoon and he says hello to everyone. We're now hearing he may be able to go home Fri or Sat., so we'll see how he does with the rest of his chemo. Hopefully, the tough part of this round is over...keep those fingers crossed. Love,Karen
Monday, January 12, 2004 9:50 PM CST
Hello, Jordan was readmitted today for his 4th round of chemo. The meds used this time are a little different than the ones he has received before, but it all goes according to Dr Kushner's protocol. The doctor said he may not feel quite as nauseated with this round. We'll keep our fingers crossed. That's the good news, the bad news is it takes 2 extra days to administer this med so he will be in the hospital until at least Saturday night or Sunday. Unfortunately today was a wasted day. The floor was very busy and his chemo wasn't started until 8pm and he had been there since 10am. I understand completely about having a busy floor, believe me, but I think it's sad he had to spend the whole day waiting in the hospital, when he could've waited at home. Poor kid!! Bob is spending the night with him and he has been annoying (oops!) I mean entertaining Jordan with his jokes and singing and movie trivia. They were both in good spirits as I was leaving this evening. Jordan has escaped to the teen room a few times to check it out now that he is able to legally be in there. They're pretty strict about keeping the younger kids out, so he only got to sneak in there once before when he had a really, really nice nurse. We won't mention any names!!
Anyway, just wanted to update you and let you know the 4th round has started and we're hoping he sails through with less side effects!! Thanks for checking on him.
Love, Karen
Thursday, January 8, 2004 3:58 PM CST
Hello everyone, Well....we went to see Dr LaQuaglia at Sloan Kettering today. Bob and I thought he was very nice. Jordan says he seems very serious which made him a little nervous. I told him that's OK, not all Drs are going to chase him into the waiting room to give him a hug goodbye like Dr Gillan at CCMC or comment about his BIG brown eyes everytime she sees him. Drs can be serious,yet still be nice and besides how lucky are we that he's also wonderfully talented at what he does!! Anyway, our visit went very smoothly. We were actually brought in to be seen about 45 minutes earlier than our scheduled appt. which was a nice surprise. Dr LaQuaglia showed us the CT scans to compare the before and after and it is easy to see the chemo is doing it's job! He was impressed with how Jordan has responded to the chemo so far. Dr LaQuaglia is a pretty busy guy, so Jordan's surgery couldn't be booked until February 11th. They told us to plan on being in NYC for 10-14 days because this is a very extensive surgery which normally takes btw 6-8 hours. Then he will be in step down ICU for about 4 days before getting to the normal pediatric floor for the remainder of his recovery. Because there is a big span of time btw then and now, Jordan will have a 4th round of chemo prior to the surgery. He is being readmitted to CCMC on Monday and is usually in the hospital for 3-5 days for each round. We were also able to visit with one of Dr Kushner's nurse practitioners today. Everyone is very kind there.
Anyway, we just wanted to let you know how our visit to New York went. Jordan is still feeling good and enjoying his time away from the hospital while it lasts. Thanks for checking on him!
Love, Karen
Tuesday, January 6, 2004 12:55 AM CST
We've added pictures so take a look. They aren't as clear or as big as I would like, but that's alright. At least we finally figured out how to get them on the webpage.
Sunday, January 4, 2004 11:33 AM CST
Hi everyone, So exciting..... I have nothing new to report medically!! Jordan enjoyed the holidays just like all the other kids... how wonderful!! He is feeling fine and has been hanging out with his friends around the neighborhood and having a good time. Bob and the boys are going to a Wolfpack game tonight which is something they have enjoyed doing together for years.
Hope everyone enjoyed the holidays, too!! We're off to NYC on Thursday to see what Dr LaQuaglia has planned, so we'll update you then. Take care,
Karen
Tuesday, December 30, 2003 9:40 PM CST
Hello to all..... Dr Gillan called today to say she had spoken to the surgeon at Sloan Kettering today and that he would like to see Jordan next week for a consult. I believe we will be going on Thursday, but that plan may change if Dr LaQuaglia's office calls us back. (They said he may want to see him Tuesday instead, but right now there aren't any openings in the schedule) Jordan's been having a nice break away from the hospital...just being a normal kid, visiting with his friends and family. Today he went to the West Hartford Science Center with Auntie Janet and they had alot of fun. Tomorrow the kids want to go shopping and spend their holiday loot so who am I to say no??!!!!Thanks for all the new messages! Happy New Year!!
Monday, December 29, 2003 6:41 PM CST
Hello everyone, Well...... Dr. Gillan called this afternoon with some good news. She said that according to the radiologists at CCMC, Jordan's cancer is shrinking away better than she dared to hope it would. Yeah!!!!!! So now the report and scans will go to Dr. Kushner at Sloan Kettering in NYC to see what our next step will be. Dr. Gillan is expecting them to say they want to do the surgery soon, but I guess we'll have to wait to see what they say. Keep those prayers and good wishes coming 'cuz they're working!!! Have a safe and happy New Years celebration. Thanks for all of the entries in the journal.....it''s fun to hear from everyone!! Love, Bob,Karen and Jordan
Friday, December 26, 2003 10:20 PM CST
Hi everyone, Well..... Jordan had his CT scan today. He tolerated it very well. Being that it is the day after Christmas, I don't think we will have any results until Mon or Tues. The results/scans then go to NYC and the team there will decide our next step....surgery or another round of chemo. We'll keep you posted. Jordan had a great Christmas. He got a little tired out, but he was happy to see all of the family. He has been riding around the yard on his Christmas present. I'm sure the neighbors are thrilled as he roars by on his CR85 dirt bike. He tries to tell me it's only a little louder than a lawnmower and the neighbors won't mind....yeah right!! Jordan turns 13 tomorrow. HAPPY BIRTHDAY JORDAN!! WE LOVE YOU!!
Wednesday, December 24, 2003 4:37 AM CST
Happy Holidays to all, from our family to your's !!! We are excited, Jordan is home for the holidays and his 13th birthday. We didn't get the catscan done while we were in the hospital, so we have to go back on the 26th. I will write again soon.
Bob and family
Monday, December 22, 2003 5:20 AM CST
Well I guess I spoke to soon, Jordan was admitted back in the hospital Saturday morning with a fever of 101.We are hoping he will come home today or tommrow.We are hoping to get his catscan done before we leave. I will let everyone know the results asap.
Hope all is well with everyone!!
Bob & Karen
Friday, December 19, 2003 6:41 AM CST
Welcome all,
We just learned about this caringbridge website and we will try to keep all of Jordans info.posted here. Let me start on OCT 8th. Jordan was diagnosed with DesmoplasticSmall RoundCell Tumor, this is a very rare and serious cancer. Up to this point , Jordan has gone through 3 rounds of P6 Chemotherpy, and Stemcell
Harvesting.This round (# 3) was the first time Jordan didn't get admitted back into the hospital for fever, which is a very common thing to happen.His white blood cell count should start climbing today or tommrow. On December
26th he will have a catscan here in CT. the results will be sent to NY. Sloan Kettering .His surgeon will determine from the results when they will operate< it may be right away or they may suggest that we start the 4th round of Chemo. either way Jordan will not be in the hospital for Christmas or his 13th Birthday. When he does go back for Chemo , he will be able to use the TEEN Rm. at CT Childrens (yippee).
If you are reading this, then you are a friend or family member . Let me ThankYou for all that you have done.
From the Prayers to the Babysitting to the just listening to us Complain, ETC.It means alot to us that YOU are there to support us in everyway that you have.THANKYOU !!!!!
Bob and Karen
Friday, December 19, 2003 5:39 AM CST
This page has just been created. Please check back for additional updates.
Click here to go back to the main page.
----End of History----
| Privacy Policy | Sponsorship/Donations | About Us | Contact Us | FAQs | ||
| Copyright © 1997-2003 CaringBridge Nonprofit Organization, All rights reserved. | ||