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Friday, March 6, 2009 6:30PM Jersey Time
Please donate any money to my team for Relay for life
please follow the following link and support my team
http://main.acsevents.org/site/TR/RelayForLife/RFLFY09EA?pg=team&fr_id=14004&team_id=369066
Friday, November 28, 2008 6:15 PM Jersey Time
hey everyone, just updating
I hope everyone had a Great turkey day.
We went to my Aunt Ann's house for dinner and always it was great!!!!!!!!!!! I forgot to bring a camera so no pictures.
Hey everyone!!! It is almost that time of year, my favorite holiday. I just want to ask anyone to help out your local cancer hospital. You can do this by giving gifts to kids with cancer. Most parents do not have enough money to pay for their child’s treatment and get gifts for all of their kids, so please donate any money, gift cards, toys, stuffed animals, or even send cards to the kids at the hospital. I know that I always loved getting cards when I was sick (I still do!!)
Getting back to me this is my favorite time of year, because I get to spend time with my mother’s side of the family. I love seeing everyone!!!
A NOTE TO MY FAMILY AND FRIENDS of what we would like for Christmas
**Everthing that is listed is from Bestbuy.com**
Kelly Christmas Wish List
1)Metro Station CD by Metro Station
2)3 Doors Down CD by 3 Doors Down
3)The Open Door CD by Evanescence
4)ALS Industries- Hello Kitty Game Traveler for Nintendo DS Model: HK11
5)ALS Industries- Hello Kitty Game Traveler for Nintendo DS Model: HK60
6)Viva La Vida CD by Cold Play
Clothes:
Shirts/t-shrist: xs - small
Jeans/pants: xs/1
Roberts Christmas Wish List
1)BD&A - Two-Pack Pen Stylus / Screen Protectors for Nintendo DS Lite
2)Microsoft- Xbox 360 Play & Charge Kit
3)Microsoft- Xbox 360 Universal Media Remote
4)ALS Industries- Game Card Traveler for Nintendo DS
5)Microsoft - 1,600 Microsoft Points Card for Xbox 360
6)Halo 3 CD - Original Soundtrack
Sunday, November 16, 2008 6:45 Jersey Time
Hey everyone!!!
It is almost that time of year, my favorite holiday. I just want to ask anyone to help out your local cancer hospital. You can do this by giving gifts to kids with cancer. Most parents do not have enough money to pay for their child’s treatment and get gifts for all of their kids, so please donate any money, gift cards, toys, stuffed animals, or even send cards to the kids at the hospital. I know that I always loved get cards when I was sick (I still do!!)
Getting back to me this is my favorite time of year, because I get to spend time with my mother’s side of the family. I love seeing everyone!!!
A NOTE TO MY FAMILY AND FRIENDS of what we would like for Christmas
**Everthing that is listed is from Bestbuy.com**
Kelly Christmas Wish List
1)Metro Station CD by Metro Station
2)3 Doors Down CD by 3 Doors Down
3)The Open Door CD by Evanescence
4)ALS Industries- Hello Kitty Game Traveler for Nintendo DS Model: HK11
5)ALS Industries- Hello Kitty Game Traveler for Nintendo DS Model: HK60
6)Viva La Vida CD by Cold Play
Clothes:
Shirts/t-shrist: xs - small
Jeans/pants: xs/1
Roberts Christmas Wish List
1)BD&A - Two-Pack Pen Stylus / Screen Protectors for Nintendo DS Lite
2)Microsoft- Xbox 360 Play & Charge Kit
3)Microsoft- Xbox 360 Universal Media Remote
4)ALS Industries- Game Card Traveler for Nintendo DS
5)Microsoft - 1,600 Microsoft Points Card for Xbox 360
6)Halo 3 CD - Original Soundtrack
Sunday, November 16, 2008 6:33 Jersey Time
Hey everyone!!!
It is almost that time of year, my favorite holiday. I just want to ask anyone to help out your local cancer hospital. You can do this by giving gifts to kids with cancer. Most parents do not have enough money to pay for their child’s treatment and get gifts for all of their kids, so please donate any money, gift cards, toys, stuffed animals, or even send cards to the kids at the hospital. I know that I always loved get cards when I was sick (I still do!!)
Getting back to me this is my favorite time of year, because I get to spend time with my mother’s side of the family. I love seeing everyone!!!
A NOTE TO MY FAMILY AND FRIENDS of what we would like for Christmas
Kelly Christmas Wish List
1)Metro Station CD by Metro Station
2)3 Doors Down CD by 3 Doors Down
3)The Open Door CD by Evanescence
4)ALS Industries- Hello Kitty Game Traveler for Nintendo DS Model: HK11
5)ALS Industries- Hello Kitty Game Traveler for Nintendo DS Model: HK60
6)Viva La Vida CD by Cold Play
Clothes:
Shirts/t-shrist: xs - small
Jeans/pants: xs/1
Roberts Christmas Wish List
1)BD&A - Two-Pack Pen Stylus / Screen Protectors for Nintendo DS Lite
2)Microsoft- Xbox 360 Play & Charge Kit
3)Microsoft- Xbox 360 Universal Media Remote
4)ALS Industries- Game Card Traveler for Nintendo DS
5)Microsoft - 1,600 Microsoft Points Card for Xbox 360
6)Halo 3 CD - Original Soundtrack
Friday, August 15, 2008 3:01 PM Jersey TIme
hi everyone!!!!!!!!!!
just an update on everything.
Today we are going to the New Jersey Blue Claws baseball game. I will try to have mom post the pictures of the family with Buster the mascot of the Blue Claws.
Tomarrow I go to the Ronald McDonald Camp for CIT(counsler in training)and I'm verry happy about that!! The past 2 weeks have gone so slow because I'm really happy to be going. I want to give back to the cancer community by being a counsler and helping kids with cancer and their siblings, because when I was first diagnosed and went to my first camp the counslers helped me alot and I want to do the same with other kids
The School Year starts on September 3 for me and Robert!!Mom is very happy with that!!!! September 3 also starts my Senior Year in Barnegat High School. I also will be only doing Bakery and waitressing in Culinary School this year. At home school I will have HSPA math and english, 12 grade health classes.
I will be having surgery on my left hip and knee on Septenber 30. My left side has really been bothering me during the summer so when mom and dad to me to Doctor Wells in the being of August he wanted to get the hip done since it was bothering me.
That is everthing that is going on with me and everyone in the family.
Kelly
Friday, August 15, 2008 1:41 PM CDT
hi everyone!!!!!!!!!!
just an update on everything.
Today we are going to the New Jersey Blue Claws baseball game. I will try to have mom post the pictures of the family with Buster the mascot of the Blue Claws.
Tomarrow I go to the Ronald McDonald Camp for CIT(counsler in training)and I'm verry happy about that!! The past 2 weeks have gone so slow because I'm really happy to be going. I want to give back to the cancer community by being a counsler and helping kids with cancer and their siblings, because when I was first diagnosed and went to my first camp the counslers helped me alot and I want to do the same with other kids
The School Year starts on September 3 for me and Robert!!Mom is very happy with that!!!! September 3 also starts my Senior Year in Barnegat High School. I also will be only doing Bakery and waitressing in Culinary School this year. At home school I will have HSPA math and english, 12 grade health classes.
I will be having surgery on my left hip and knee on Septenber 30. My left side has really been bothering me during the summer so when mom and dad to me to Doctor Wells in the being of August he wanted to get the hip done since it was bothering me.
That is everthing that is going on with me and everyone
Saturday, July 5, 2008 11:42 PM CDT
hey everyone just wanna update things. My grades from school are here!!!!!!!!!!!!!! and here they are
All My grades from 07-08 school year
Subject QTR1 QTR2 QTR3 QTR4 FINALgrade
Culinary 88 80 80 80 82
Science 97 87 93 90 89
English3 89 91 85 89 89
Math3 90 90 94 93 89
US2 95 96 95 96 95
Finally after everything that I have gone through I'm finally going to be graduating this coming school year! With all that I gone through I'm very happy but sad at the same time. I'm happy that I have made it to the point that I WILL BE GRADUATING High school with friends from NYC while some of my friends will not, because the cancers they had killed them. =(
I would just like to thank my family, friends and my NYC family for putting up with me while I was on treatments and also wanna thank all of my doctors, nurses and everyone else who put up with me during treatments. If it were not for all of you I would have never made it this far.
ohh yeah mom and dad are taking us camping tomarrow through thrusday
Sunday, April 13, 2008 8:05 Jersey Time
Hi everyone,
Nothing to really report,I'm doing great. I'm off my crutches. I will be starting PT really soon.
We had a great Easter, we stayed home and had a nice dinner.
Upcoming events
April 14: NYC
April 21: Dad's birthday
21-24: NYC
April 26: My birhtday
May 28: My rebirthday
See ya all soon,
Kelly
Wednesday, March 19, 2008 7:03 PM CDT
Hi everyone,
I'm doing great. Nothing really to report here.
I'm doing great in school we just got my mid-term grade for U.S HistoryII it is a 95(A)I still have to take my General Science Two, English 3, and Math Matters 3
I cannot believe that its already Easter. Next it will be my fathers birthday then my two birthdays(my birth and my rebirth)and then its summer.
I doing great with the crutches but I'll be taking my wheelchair in on the days that I have to stay after for tutoring
Please pray for all the men and women in our armed services. In school we just found out that someone for Barnegat was just deploded. So please pray for his safe return.
Please pray for my friend Devin's counts to go up so he may leave the hospital soon. Please also pray for those that are battling this nasty thing we call CANCER.
Kelly<3
Tuesday, February 26, 2008 10:10 PM Jersey Time
hey just wanna update saying that im doing great. I went back to school last Thursday, but mom and dad would not allow me to go Friday cuz it was snowing
On another note please pray for my friends Alyssa and Devin Reid who are battling this nasty thing called cancer.
Please also pray for the other kids who are fighting the battle of their lives
love ya all
Kelly
Wednesday, January 30, 2008 7:55 AM CST
Hiya Folks,
Kelly is doing very well after her surgery. She has some pain but nothing our little trooper can't handle. Our challenge right now is the steps in the house. She is paranoid about coming up and down them on her butt and I am paranoid of her coming down on crutches. She is not very strong to do the steps going up either. So she gets dad to carry her down either first thing in the morning or as soon as he gets home.
Kelly will be going to Philly on Monday for follow up after the surgery and Tuesday we will go to NYC for her monthly checkup with Dr. Kernan. I am not looking forward to traveling up by train with her but these things need to be done so just keep your fingers crossed that we can navigate Penn Station in a wheelchair and catch taxis easily.
Sorry for no picture updates but Kelly is not allowing me to take any pics of her right now. I must also admit that getting pictures up on the site is a very huge challenge for me. As soon as I can I will get some pics up.
As always please keep the children and families in your prayers and thoughts as they battle this beast.
Love,
The Loftus Family
Tuesday, January 15, 2008 10:20 AM CST
Hiya Folks,
It has been a while since I last updated on Kelly’s medical conditions. She is doing well on the cancer front. We still have a bit of GVH disease over her eyes but that seems to be a long term issue for Kelly. She just needs to keep them moist with a special lotion. It sure is a lot different then where we were over 2 years ago with us doing radiation 3 times a week in a sun booth.
Kelly has been having her usual aches and pains with the winter weather settling in. We have had her on pain patches due to her a vascular necrosis since early October. Rob and I decided with Kelly’s imput to research other options for this since up in Sloan our only option was to increase pain meds and down the road to do total replacement of her knees, hips and shoulders.
We did end up going to the Children’s Hospital of Philadelphia. We met with an orthopedic specialist named Dr. Wells. He gave us the option of a surgery that would not do total hip and knee replacement but to cut out the dead bone and replace it with some of Kelly iliac and bone from the bone bank. We went through a MRI. We learn that Kelly’s hip was very close to collapsing . We as a family decided we had nothing to lose and everything to gain from Kelly having this surgery. When I say nothing to lose , you have to see some days when Kelly can barely pull herself out of bed without assistance from her Dad. To see her struggle to walk which made both Rob and I to find something that would give Kelly her freedom from us. It was very hard for me to watch the daily struggles of a my 18 year old daughter walking around as she was a little old lady.
Well today we are in CHOPS for her surgery. We arrived at 6:15am….. She was taken to the OR where she had an eperadural(sp) for pain management. Her procedure started at 8:54am. It is a minimum of a 5 her operation. I ask that you keep Kelly in your prayers today.
Will update soon.
Love,
Therese and Rob
Monday, December 24, 2007 10:52 PM Jersey Time
I would just like to wish everyone a safe Christmas and a Happy New Year.
Hope Santa brings everyone everything they want.
DON'T DRINK AND DRIVE!! BE SAFE
Wednesday, November 21, 2007 10:08 PM Jersey Shore Time
Hi everybody
Life is going great!
It is almost that time of year, my favorite holiday. I just want to ask anyone to help out your local cancer hospital. You can do this by giving gifts to kids with cancer. Most parents do not have enough money to pay for their child’s treatment and get gifts for all of their kids, so please donate any money, gift cards, toys, stuffed animals, or even send cards to the kids at the hospital. I know that I always loved get cards when I was sick (I still do!!)
Getting back to me this is my favorite time of year, because I get to spend time with my mother’s side of the family. I love seeing all of my little cousins (Chris, Emily, and Brian.) I also love to see my favorite Aunt Ann and Rose Mary. Hopefully this year I get to see my older cousin Jamie and his two kids (love ya guys.) This year at Thanksgiving I will be bring pies for dessert.(which look great might I add)
A NOTE TO MY FAMILY of what we would like for Christmas
Katie’s Wish List
Any type of Latch Hooks, books, clothes
Kelly’s Wish List
1. Fergie - The Dutchess
2. Daughtry - Daughtry
3. Rihanna - Good Girl Gone Bad
4. Avril Lavigne - The Best Damn Thing
5. NCIS: Complete First Season
6. Anything Tinker Bell (latch hook if possible)
Robert’s Wish List
1. MLB 07: The Show; for Play Station 2
2. NASCAR 08; for Play Station 2
3. Major League Baseball 2K7; for Play Station 2
4. NCIS: Fourth Season on DVD
5. Naruto: Ultimate Ninja 2; for Play Station 2
6. Naruto: Ultimate Ninja Heroes; for PSP
___________________________________________________________
I'm sorry that I have not really told everybody about my wonderful week at camp. I had such a great time in the Pennsylvania Mountains. I got to see 3 bears (a momma and two cubs) I also got to go horse-back riding, which was really fun. I got to do a lot of arts and crafts, like scrap booking and I also got to cook wonderful things that we made for the dance we had in the Mess Hall. I got to meet wonderful friends that were my age that had very rare cancers. I will try to get mom to add the photos from camp I keep asking her but she keeps forgetting.
I wish to everyone a Happy & Safe Thanksgiving
And before I forget RANGERS WON tonight(OH YA)
Friday, November 9, 2007 2:25 PM JerseyTime
Hi everybody
Life is going good!
It is almost that time of year, my favorite holiday. I just want to ask anyone to help out your local cancer hospital. You can do this by giving gifts to kids with cancer. Most parents do not have enough money to pay for their child’s treatment and get gifts for all of their kids, so please donate any money, gift cards, toys, stuffed animals, or even send cards to the kids at the hospital. I know that I always loved get cards when I was sick (I still do!!)
Getting back to me this is my favorite time of year, because I get to spend time with my mother’s side of the family. I love seeing all of my little cousins (Chris, Emily, and Brian.) I also love to see my favorite Aunt Ann and Rose Mary. Hopefully this year I get to see my older cousin Jamie and his wife and kids (love ya guys.) This year at Thanksgiving I will be bring pies for dessert
A NOTE TO MY FAMILY of what we would like for Christmas
Kelly’s Wish List
1. Fergie - The Dutchess
2. Daughtry - Daughtry
3. Rihanna - Good Girl Gone Bad
4. Avril Lavigne - The Best Damn Thing
5. NCIS: Complete First Season
6. Anything Tinker Bell (latch hook if possible)
Katie’s Wish List
Any type of Latch Hooks, books, clothes
Robert’s Wish List
1. MLB 07: The Show; for Play Station 2
2. NASCAR 08; for Play Station 2
3. Major League Baseball 2K7; for Play Station 2
4. NCIS: Fourth Season on DVD
5. Naruto: Ultimate Ninja 2; for Play Station 2
6. Naruto: Ultimate Ninja Heroes; for PSP
I will have mom update with pictures from RMC and Thanksgiving at Aunt Ann's house
Friday, November 9, 2007 9:57 AM CST
Hi everybody
Life is going good!
It is almost that time of year, my favorite holiday. I just want to ask anyone to help out your local cancer hospital. You can do this by giving gifts to kids with cancer. Most parents do not have enough money to pay for their child’s treatment and get gifts for all of their kids, so please donate any money, gift cards, toys, stuffed animals, or even spend cards to the kids at the hospital. I know that I always loved get cards when I was sick (I still do!!)
Getting back to me this is my favorite time of year, because I get to spend time with my mother’s side of the family. I love seeing all of my little cousins (Chris, Emily, and Brain.) I also love to see my favorite Aunt Ann and Rose Mary. Hopefully this year I get to see my older cousin Jamie and his wife and kids (love ya guys.) This year at Thanksgiving I will be bring pies for dessert
A NOTE TO MY FAMILY of what we would like for Christmas
Kelly’s Wish List
1. Fergie - The Dutchess
2. Daughtry - Daughtry
3. Rihanna - Good Girl Gone Bad
4. Avril Lavigne - The Best Damn Thing
5. NCIS: Complete First Season
6. Anything Tinker Bell (latch hook if possible)
Katie’s Wish List
Any type of Latch Hooks
Robert’s Wish List
1. MLB 07: The Show; for Play Station 2
2. NASCAR 08; for Play Station 2
3. Major League Baseball 2K7; for Play Station 2
4. NCIS: Fourth Season on DVD
5. Naruto: Ultimate Ninja 2; for Play Station 2
6. Naruto: Ultimate Ninja Heroes; for PSP
Happy Holiday Day to all I'll try to have mom update the pictures from RMC and from Thanksgiving Day at Aunt Ann's House
Saturday, October 27, 2007 10:49 AM CDT
Hi peoplez it kelly just wanted to update since mom will not.
I just wanted to wish my Bailee Boo a HAPPY BIRTHDAY.I wish you were here with us to celebrate your b-day. I miss and love you so much.
Things with me are just fine. Culinary school is great, I can't wait for Christmas to make gingerbread houses.
Got to go I'm going to Girl Scouts, we are painting face at K-mart
Thursday, July 19, 2007 8:41 PM CDT
I would just like to say nothing is going on much in my life. I got my grades from school and I passed them all with flying colors. I will try to have my mom update more.
I'm pleased to tell everyone that I will be going to Ronald McDonald Summer Camp in August.
Please pray for all those in need.
Monday, May 28, 2007 8:38 AM CDT
Happy 3rd Rebirthday Kelly!!!!!!!!!!!
It has been 3 yrs since Kelly had her transplant. Its been a long road for her, but as you can see she is a fighter who has the willpower to overcome many things that she faced while beating down the cancer beast. She battled GVH, blood pressure issues, seizures and going septic on us many times.
Daddy and I want to wish Kelly a Happy 3rd Rebirthday. You have certainly challenged us in the last 3 years with many things but one thing we can say without a doubt we are so very PROUD of you!!
As we celebrate Kelly's rebirth through her transplant, our family would like to thank our generous donor Franka who gave Kelly her chance at life!!! We will be forever in your debt for taking the time to donate and that you were such a perfect match!!! WE would like to thanks all of our doctors : Dr. Kernan, Dr. Boulad, Dr. Small, Dr. O'Reilly, Dr. Procop Dr. Sklar and our wonderful nurse practioners: Anne, Heidi Catherine and Joanne. Our day hospital nurse Jen. We also would like to thank our families for their support during these hard times we could not have done it without all of your love and support.
We ask that you keep all our friends in your prayers as some are facing end of life issues while others are facing relapse issues. we met so many ppl while we were in NYC and and sometimes words can't express the gratitude I feel to each person we met along the way who helped us through our trying times and I hope we helped others in the same way.
Please remember all our soldiers today as we celebrate them for giving us the freedom we enjoy so very much. 
Love
The Loftus Family
Sunday, May 20, 2007 10:49 AM CDT
Hiya Folks,
Sorry for the lack of updates but, I did say no news is good news in my last journal ......lol cheap excuse for not updating.
Kelly is doing fairly well health wise. We have been to see the docs twice in NYC since the last update. We went to see orthopedics,transplant and eye doctors. Kelly has been having some aches and pains in her shoulders due to necrosis from her long use of steroids. The transplant doctor put her on a pain patch every 72 hours. They did x-rays on her shoulders. They want her to do a month of physical therapy. We have been trying to organize that. Kelly is out of school enough due to docs and hospital stays that I am leaning towards waiting until after school is over since they want her to go to it 3 times a week. Kelly has block scheduling and its hard enough to catch up when she is out can't imagine pulling her out 3 additional times on top of her other appointments.
The dread GVH has been rearing its ugly head in small amounts. She has it in her mouth and on her eye lids plus they feel that it is causing her blurry vision since it effects Kelly from producing tears naturally. So the transplant doctors feel its safe to keep Kelly on a maintence dose of steroids to keep the bigger problems of GVH at baby.
Yesterday, Kelly went to her first Relay For Life as a survivor of almost 3 years post transplant. I can not tell you from a parent's view of seeing her receiving her survivor's tee shirt her medalion and her walking the surviror's lap brought many tears to our eyes. I had flashbacks to our time in NYC when she had seizures,went septic and was so sick that watching her do all she did yesterday really made me proud to be called her mother/caregiver. It just showed me how strong Kelly is in her strength to be that survivor. Kelly and her classmates have a club called SMAC which is Students Movement Against Cancer. I will add pictures of the Relay.
As always I am asking for prayers for all the children Kelly and I have met in our travels that are fighting this beast we call cancer.
Love,
The Loftus Family
Wednesday, March 21, 2007 11:12 PM CDT
Hiya Folks,
Sorry for the lack of updates recently, the family has been busy with Kelly having an inpatient stay at the end of February and the rest of us fighting off colds and flu.
Yesterday Kelly went to Sloan for her check up. We found out that she was so deficient in Vitamin C that that could be one of the culprits for her not gaining weight even though she has been eating very well. She is on a med for her mood swings which one of the side effects is weight gain. Mom was very happy to see Kelly tip the scales into triple digits. She weighed in at 102.4 lbs.
Kelly asked Dr. Kernan if she could come the next time on her birthday which is April 26th. I was surprised that Dr. Kernan said yeah, I think we can stretch it that long since we been seeing you almost on a weekly basis since November. They also lowered her steroids to 2.5mgs in the morning and 5mg at night, but Dr. Kernan feels that Kelly is going to have to be on a maintence dose to keep the graft vs. host disease in check. I am hoping as time goes on that we will revisit the maintence dose since Kelly has so much necrosis from steroids.
Will update if anything happens but as they say no news is good news!!!
Please remember the children who are fighting the biggest battle of their life.
Love.
Therese and Kelly
Wednesday, February 14, 2007 8:07 AM CST
Hiya Folks,
Happy Valentine's Day.
Well it has been a fun filled week in the Loftus household. The week started out with Rob calling me from work to tell me he could not catch his breath and he was heading home. Insert here " This is not going to be a good day here"!!!!1 We called our local doctor whose staff told us to head over to the ER. We got there about 11am and did not get seen till almost 1:45. Rob had bloodwork and chest x-ray done. They hooked him up to the fluids while waiting for the results. They said Rob has pneumonia so he is home until Monday at least until he is cleared by the regular doctor.
Kelly has been doing ok with the exception of some back pain that she called from school asking to come home on Tuesday. My personal thoughts is she is very afraid of falling and hurting herself with the snow. This morning back pain was present and that it was horribley windy and it was raining so hard that I did not feel it was in her best interest to send her out in this weather....One trip to the ER in a week is all about I can handle.
The boys are gearing up for ST. Baldrick's on St. Patty's Day. We has such a blast last year at it, we promised our dear friend Barbara Zobian we would be back to help her again this year.
If you would like to donate to the cause here is a link for Robert
If you would like to donate to the cause here is a link for Rob
The following slide show is from last year's event held in the Boathouse in Central Park!!!
Friday, February 2, 2007 7:52 PM CST
Hiya Folks,
UPDATE AS OF FEBRUARY 6, 2007 3:30PM
Kelly was discharged from Sloan yesterday at 4pm. We packed everything up and made the 5:03 train home to NJ!!!!! They feel that she has a sinus infection that will be helped with oral antibotics. She has maintained her weight which is a good thing. We will return to NYC on 2/16 for our monthly IVIG infusion.
On a brighter note, Kelly received her grades for this semester.... considering she has had 2 inpatient stays in the last 3 weeks she did great. She received 3 A's @ B's and 1c. So both Mom and Dad are very proud of Kelly since she has been thru so much.
UPDATE AS OF FEBRUARY 4, 2007 8:44AM
Kelly was admitted to our local hospital with a fever last night at 8pm. She was having some low blood pressures along with the fever so they admitted her and started her on antibotics and pulled 2 sets of cultures per Sloan. Please pray nothing grows!!! I say that because Kelly likes to get the bacterias that land her in the hospital for long periods of time. I am hoping its an in and out stay.
This morning she spiked another fever so they are waiting on to see if Sloan wants her to be transported to NY. They don't do transports at night. Kelly is experiencing pain in her shoulder from her prolong use of steroids. She was so funny asking for dilaudin and the nurse was so surprised that she even knew what it was......lol I know most of you cancer moms will get a chuckle out of how well our children know the meds for pain are.
Will post an update later on today when we know what the game plan is.
Love Therese and Kelly
Kelly went to Sloan yesterday and she gained 1 pound.....whoooooohoooooooo we have avoided the discussion on a feeding tube at this time. The docs feel that Kelly is ultra sensitive to being on steroids that she is losing her nutrients from her sugars spilling out. So they decided to keep Kelly on the diabetic diet and to add insulin in small doses to see if this helps the weight problem. She was not to happy about that but its better then having a feeding tube. We return on Feb. 16 for her monthly ivig infusion. So unless something crops up between now and then there will be no medical updates till then.
On to a happier note, St. Patricks Day is around the corner... our family is gearing up for the St. Baldrick's event in NYC on March 16th. This is where Rob and Robert shave their heads to raise funds for children with cancer. We were invited to join it last year by a wonderful lady named Barbara Zobian. She is such a dedicated person that helps many of the families in the Ronald McDonald House of NY. She is always ready to jump in to help any of the families if its within her grasp even if it isn't she will find a way to get it. This is the 2nd year she has organized this event. I am asking familiy and friends to help us in our fund raising for such a great organization!!!!!
If you would like to donate to the cause here is a link for Robert
If you would like to donate to the cause here is a link for Rob
The following slide show is from last year's event held in the Boathouse in Central Park!!!
Friday, January 12, 2007 11:45 AM CST
UPDATE AS OF JANUARY 28,2007
Kelly was discharged on Friday night about 6pm. We learned that scope did not show us that the graft vs host as a culprit for her losing so much weight. We will be back in clinic on Thursday to discuss a plan of action but right now we are dealing with elevated blood sugars. The doctor inpatient feels she is not able to breakdown the simple sugars. Kelly is to follow a diabetic diet of non concentrated sweets to see if this helps to control the blood sugars. We are hoping that we will not have to introduce insulin back into her medicine regimen but she is on steroids so that kind of explains the sugar problem.
Will update again after clinic on Thursday to let you know what they have decided the next course of action will be.
Please keep Kelly in your prayers as we try to find the solution to her weight loss! Also please continue praying for all the children and families battling this horrible disease!!!
UPDATE AS OF January 24,2007
Kelly was admitted back into the hospital yesterday due to the fact that she lost a pound. Kelly was not a very happy camper due to the fact that she has been eating up a storm since our last appointment in NY. The doctors assured Kelly this will be a short stay. Well as many as you know Kelly's never been known for short stays 7 being the shortest. And when you are feeling good physically and mentally 7 days seems like forever!
Kelly will be going for an endoscope on Thursday to see if she has the graft vs host in her stomach. We have to get find out why she is losing so much weight and GVH is the most likely culprit since she still has active oral GVH in her mouth.
Will update once again when we have some answers, but please keep Kelly and all of our friends in your prayers!
Hiya Folks,
I guess I must update since Kelly hasn't!!! I was so hoping she would do it but she says I made this site to keep you all informed of her medical progress that I must do it for everything............lol btw Annie and Robin you will regret the update once you see how long it is.........lmao
Kelly's Make A Wish was so fantastic and a much needed break from the world we live in. It was so wonderful to be somewhere "warm" that to hear Christmas songs playing and being in shorts kind of blew us all away since NJ is not known for shorts and tee shirt weather in December. Our day started with a white stretch limo picking us up at 4:30 am in the morning and it being rainy and cold.
We were whisked to Philadelphia International Airport to catch a flight to Florida. We had some problems with the plane that we sat on the runway for almost a hour while they fixed the problem. We arrived in Florida to it being sunny and 80 degrees. We were met by a volunteer from Give Kids The World who helped us to get to our luggage and to the car rental where she gave us our directions to get to the Village.
We had a short ride from the airport to the Village where Kelly was greeted like she was a "princess" little did they know Kelly thinks she is a princess!!!LOL The folks at the Village were awesome to us even though we were unable to stay there due to it being booked up. Kelly and Robert were given some tee-shirts and presents on arrival.
We grabbed lunch there while I waited for the orientation to begin. Robert soon learn that he could have ice cream so that was his lunch the first day in Florida. I know some of you are cringing at the thought of Robert having any sugar but hey we were on vacation so he got it but its a good thing we did not stay in the Village cause you can get ice cream all day longgggggggggggggg every day! After lunch, I went to the orientation while the kids and Rob walked around the village to kill time. What a beautiful place it is for kids!!! After we headed over to the Contemporary at Disney World.
The rooms we were given were great!!! Kids got in the room and they were like can we go swimming now??????? So the 4 of us all got dressed in our bathing suits and head to the pool.
Robert loved the slide and yes even Mom went down the slide........lol they thought I chickened out but it was a nice out so there were alot of kids at the pool and I watched a few of them go down the slide.Actually was building up the nerve to go down the slide.........lol This was Kelly's first time in a pool in over 2 yrs, she was in heaven and I was so moved that for just a time I looked at her as a kid! not a kid that has been struggling for over 2 yrs trying to deal with her complications of her disease.(I have learned to treasure the moments that she is just a "kid" cause I have watched her struggle so hard to be one.) Sorry for my mushiness on this! After the pool, we went to have a quick dinner in the hotel. We were pretty tired out that we watched the fireworks over the Magic Kingdom from our balcony. We went to sleep pretty much after that.
We were up bright and early to do the parks each day. Kids loved doing the parks but were itching to go back to swim for a while at the pool.
Christmas Day we did the Magic Kingdom, well the morning was great but by mid afternoon we got poured on, so we headed back to the hotel for a short nap before we headed over to Give Kids the World for dinner then back into the park for some more fun.
The icing on our vacation was when we went to Sea World, our dear friend Robin met us there to surprise Kelly. Of course, Mom did not have the camera ready for the priceless picture that it was. I can't say Thank You enough to Robin for being there for Kelly! Its the one highlight of her vacation that she talks about so much. Good thing we got the picture as we entered the park because for some reason the Floridian ducked out of the pics that I did take.
We had so much fun catching up with Robin but the day ended all to soon for our liking. Robin gave Kelly stuff that was donated from Robin's local Hooters which Kelly just loves.
Our last day in Florida, we spent at Give Kids the World. Kelly put up a star in the Castle of Dreams, its an awesome sight to see all these stars on the ceiling because each one represents a child who was granted their one wish thru the many foundations who give our children a dream vacation to be just a kid for a short while away from doctors, nurses, hospitals and their treatments. We are so thankful to our wonderful local chapter of Make A Wish for granting this to Kelly. All to soon it was time to leave but it was a vacation that was awesome and where none of us will ever forget.
MEDICAL UPDATE:
Kelly and I returned to Sloan yesterday, it was time for our monthly IVIG infusion. We been having some issues with Kelly that have been causing us some concern. The most pressing is her weight, in some of the pictures you will notice how thin she is, a whole whopping 93 lbs.
Well, the docs have decided that they want a 10 day log of what she is eating in great detail. She needs to tell them what she is eating, how much she is eating as in a peanut butter sandwhich how many teaspoons of peanut butter or tablespoons in Kelly's case and how much she ate of it. After they get this log back they will give it to the dietician to make sure Kelly is getting enough proteins and calories in her diet. If it comes to show that she is not getting enough that will put a tube in her stomach to make sure she is getting enough. If she is then our next step will be a biopsy of her intestine and liver to rule out that dreaded Graft vs Host Disease. Finally, after these two areas are rules out they aren't the culprit they said they would have to put it off as a genetic factor that Kelly is going to be awfully thin.
Our second less worrisome problem but that happens daily, is Kelly has a real problem with itching, they removed the one of her meds to see if it will relieve it. The doctors did not think this is the cause but itching started soon after the med was. They like to say its winter and a common ailment that Kelly really needs to keep her skin moist with lotions. So we will do without this med for a month to see how it goes but, after if it proves true or false that this med is causing it they will have to use another form of it since Kelly needs to be on it.
I wanted to add these pictures to show Kelly from Christmas2005 to
Christmas 2006
to show how much weight in one year she has lost. It doesn't even look like the same child.
In closing, I ask that you keep our friends that are still battling their disease in your prayers and to give their parents the strength to get thru each and everyday. Its a struggle each and every day to watch your child go thru it whether its the disease itself or the complications of meds. I ask you say some special prayers for Michele, Carter and Dylan who are having it rough as we speak. Hug your children and be very thankful they are healthy!!!
With much love,
Therese and Kelly
Saturday, December 16, 2006 4:53 PM CST
Hiya Folks,
First off we would like to wish you Happy Holidays, may it be a happy and very safe holiday season for you and yours.
We were in NYC yesterday for Kelly's monthly IVIG. She has been complaining about mouth sores so when the doctor looked in she decided she wanted a biopsy done to confirm Graft vs. Host Disease. So we were taken off the IVIG infusion so we could go down to the dental clinic. The dentist looked in Kelly's mouth and said no biopsy was needed cause she already could tell that it was indeed Oral GVH! Well as you can imagine Kelly was not happy about that at all cause she is now back on a low dose of prednisone. So Kelly gets hooked back up to her IV. The doctor also told us that Kelly with haveing Oral GVH is having the issue that she is not maintaining an adequate weight for her age and height. Anything that Kelly is eating and drinking the GVH is taking all the calories from them. She is considered right now to be failure to thrive. Kelly weighed in at 95lbs. yesterday. I mean i feel for Kelly, cause after 2.5 years I thinks she is tired of being poked and prodded. The blessing in all of this is Kelly has been CANCER FREE now for over 2 yrs!!!!!!
She was really not happy when our Nurse Practioner Ann came into tell us we needed to come back next week. Kelly was like WHYYYYYYYYYYYYYYYYYYY....... well the Doctor wants to check her mouth sores again and we were told also that Kelly's liver counts are elevated and they want to repeat the bloodwork again to see if they have come down any and if not we need to figure out why they are elevated.
Kelly only can see that her Make A Wish trip might get canceled. We are due to leave on Saturday, December 23rd to go to Disney. Ann assured us nothing would keep us from going. We are looking forward to going to see the Mickey and Minnie!!! The kids are actually looking forward to a Christmas where they can be in shorts and go swimming. New Jersey is not known for swimming weather on Christmas Day.........lol. We are hoping for really warm weather while we are in Florida. Do you hear me Robin????LOL
I will try to update before we leave about her bloodwork on Tuesday.
In closing, I ask that you pray for the families that are fighting this beast we call cancer. Please know how blessed our family is for having friends and family that have been our greatest strength to get through this ordeal the last three and half years. May you have a Merry Christmas and a Happy New Year!!!!!!!!!!
Love,
Therese,Rob,Kaity,Kelly and Robert
Thursday, December 7, 2006 1:52 PM CST
please anyone who would like a pen pal from my
school please email me and tell me what you would like
@ jerseyriley042689@yahoo.com
hope everyone emails me
Saturday, November 25, 2006 10:16 AM CST
Hey Everyone,
I hope everyone had a great and SAFE Happy Thanksgiving.
I sure did, I spent time with all my cousins and all my aunt's and uncle's
I love spending time with my family. When I was up in New York I did not get to see very much of them. So when I spend time with my family it is the greatest joy to me.
Please pray for all who are in need
Saturday, November 25, 2006 9:27 AM CST
Hey Everyone,
I hope everyone had a great and SAFE Happy Thanksgiving.
I sure did, I spent time with all my cousins and all my aunt's and uncle's
I love spending time with my family. When I was up in New York I did not get to see very much of them. So when I spend time with my family it is the greatest joy to me.
Please pray for all who are in need
Thursday, September 7, 2006 9:49 PM CDT
Hiya Gang,
Hope everyone had a wonderful summer. We sure did enjoy finally getting home from NYC. Coming home was a bit scarey for Rob and myself after having the safety cushion of the hospital only being 5 blocks away, but Kelly has done great healthwise. You will not believe she is the same person since her steroids are almost down to nothing. Will post a picture to show you all the difference. Its amazing to look at pictures taken in NYC and see such a difference especially when you live with her you just don't see it. We only go to NYC now once a month. We return to NYC on September 15th. Hoping that at that time we will get the go ahead to come in once every 2 or 3 months.
Today, Kelly finally started high school. Mom was doing the happy dance that she was finally doing what a typical teenager should be doing and that is going to school. We met with the her guidance counselor and she got to pick out her classes. Kelly is exempt from taking gym at this time due to her health issues. Kelly thought that was a free ride to study hall but I nixed that real quick........lol. She will be taking drivers education theory for the first marking period then for the rest of the year she will get additional help in her subjects since she really did not get that much of an education while she was sick.
That is not to say I did not have anxiety about letting her go and not having her with me. She came thru the door saying I am HOMEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE!!!!!insert a sigh of relief here...........lol I know that I have to let her have some freedom cause she is 17 not 7 but I am always worrying about things and I guess in time it will become easier. At least I am hoping that is the case.........lol.
Recently, we finally found out our donor is from Germany! Words can never ever express the gratitude Rob and I both feel to this wonderful person who took the time to become a donor. Without her and the many people who become donors our future with Kelly would of been uncertain. We are hoping in the near future we will be able to meet Kelly's donor to thank her properly for saving our beautiful child. I am sure that it will take some planning on both ends since it is not in the USA. This is one of Kelly's fondest goals is to meet our wonderful donor. I am hoping that in the near future to be tested to become a donor. There are so many families that can't find matches for their children. The testing to become a donor is pretty straight forward 3-4 vials of blood taken out of your arm. I say this because both Kaity and Robert were tested to be Kelly's donor but were not close enough of a match. They put your info in a registry, you will never know if taking this small step you might help a family that is desperately searching for a way to save the life of a loved one!!!!
Kelly has finally made the final step in getting her Make A Wish! She has chosen to take the family to Disney World in Florida at Christmas time. WE are waiting on the final paper work to be processed. We were told we would be staying at Give Kids the World complex outside of Disney. So the kids are excited about being somewhere warm for the holidays!!!
I hate to end this on a sad note, but Kelly's little friend Bailee became an angel last night. Please use the link below to send encouraging messages to this family. This little girl fought a great fight against this ugly beast. Kelly is truly shaken up cause she truly "Believed in Bailee" and herself beating this beast together!
Will update again next week after our trip to NYC!!!!
Love,
Therese
Saturday, September 2, 2006 11:00 Jesey Shore Time
hey all,
I'M FINALLY OF KEPPRA AND SOON WILL BE OF PREDISONE AND GUESS WHAT ELSE IS FANALLY HERE...........................
.................SCHOOL.............
School starts this tuesday for robert but i don't start till wednesday or thursdayso on tuesday i will go to get a few things for school with my grandma
EVERYONE PLEASE pray for my baliee to recover and get out of the hospital
Thursday, July 27, 2006 10:45 AM CDT
hey everyone sorry i have not updated in a REALLY long time, but I have been so busie with going to my grandma's and going to the beach. the doctors are letting me put highlights in my hair im gonna try to get them to let me dye all of my hair blonde, and mommy is letting me to and i already ask if i could get my 2nd holes done and the top part of my ear but they said no!!! we are only going up to nyc once a month cause my counts are so great but the doctors are seeing if i still have to do i.v.i.g. so on the second of august they are gonna check my levels
And dont forget to say happy b-day too Alyssa really soon
shes gonna be 19
Saturday, June 17, 2006 9:55 PM CDT
Our Angel Ally is with God. I wish her mom and dad, family and friends. Brad and Jeff Who always had her laughing. NEVER a dull moment with her, she had you on your feet at all times. She loved runing, playing in the RMDH phone booths and eating her favorite food mac and cheese. I just want everyone to pray from her family and rememeber all the great and kool times we had with this special little girl who always was a fighter.
Just a little update. Me, Robert, and mom have to go back
to RMDH for a couple of days cuz on Monday I have IV IG which is like 4 hours long and Tuesday I have to have my bone marrow dheck up. It's been about 2 years since I have had one so mom thinks i might be in a little bit of pain, so we are going to stay at the RMDH. Hopefully I won't be in any pain so we can come home right away
HAPPY FATHER'S DAY TOO
ALL THE FATHER'S WHO ARE IN THE RMDH AND ALL
OVER GOD'S GREEN EARTH.
HAVE A WONDERFUL DAY.
Thursday, June 1, 2006 9:45 PM Jersey coast time
Hello everyone. just wanted to tell everyone I am okay, but our Angel Ally is with God as of Tuesday. I wish her mom and dad, family and friends. Brad and Jeff Who always had her laughing so much she would almost wet herself. She always had a smile on her little face. Never i dull moment with her, she had you on your feet at all times. She loved runing, playing in the RMDH phone booths and eating her favorite food which she was not really allowd to have Mac and cheese from KFC. I just want everyone to pray from her family and rememeber all the great and kool times we had with this special little girl who always was a fighter.
I will try to up date with pictures of me from the prom which will be on Wenesday and if you really want to know what im doing just give me a email @ jerseyriley042689@yahoo.com
I LOVE AND MISS YOU MY SPECIAL LITTLE FRIEND
ALLY I <3 U
Friday, March 10, 2006 1:33 PM CST
March 17,2006 UPDATE:
Kelly has the luck of the Irish.... she is being discharged today...woooooohhooooooooooo. The doctors still don't know really why her blood pressure dipped so low, cause they can't find any infection that would cause it to do it. We will be going home with 4 weeks worth of antibotics to make sure what ever is in her system will be knocked out. We will still be seen in clinic twice a week.
Kelly and I wish all our families and friends a Happy St. Patrick's Day. We are hoping to go over to the St Baldrick's Celebration at the Boathouse at Central Park to watch Dad and Robert being shaved for such a worthy cause to benefit all childhood cancer research.
Kelly and I ask that you continue to keep all our friends we have made up here in your thoughts and prayers as they face some of the biggest challenges of their young lives.
UPDATE: March 10,2006 Kelly is now in Sloan and doing very well.....still no news on what really caused her blood pressure to go down so low but she had a CT scan done on her sinus/teeth area to see if one of these is the culprit hiding an infection.
St. Patrick's Day is Friday, Dad and Robert are trying to raise funds for an organization called NIT who help childhood cancer funding. They will be shaving all their hair off at the Boathouse in Central Park.
Robert cutting Daddy's hair.
Kelly cutting Robert's hair for St. Baldrick's celebration.
If you would like to donate to the cause here is a link for Robert and this is a link for Rob You are able to donate online or through the mail.
Hi Folks,
Sorry I have not updated lately but I figured Kelly was ready to take over telling about her life up here in NYC..... but once again Kelly has decided to stump the docs with low blood pressure issues which landed her in the ICU in NY Presbyterian Hospital on Wednesday night. Kelly will be moved over to Sloan sometime today(Friday).
On Wednesday night, Kelly was not feeling like herself.... she was not eating(very unlike a child who is on steroids),complaining that her stomach was hard and hurting,and of course low blood pressures in the neighborhood of 90's over 50's then it started dipping down into the 80's over 50's. Of course, when I am talking to the Fellow on call, Kelly is saying to me my stomach doesn't hurt anymore that she is fine and is not going to Urgent Care(cancer hospital ER). Fellow tells us come on over to be checked out. Kelly knew she was going in patient cause she packed her blankie and her stuff animal she calls Puppy!!!!(its is the closest she is going to get to have any four legged creature in the near future)...... so off Kelly goes to the hospital with Dad.
Kelly and Dad get over to the hospital, her blood pressure was really dipping low and she was spiking a temperature, that they took cultures, starting hanging bags of fluids to push the blood pressure up. There was talking of giving her massive dose of steroids, temporary central line and to put a catheter in her which of course Kelly fights even though the last time she had this was done she was sick as a dog! The catheter was being considered cause the one time she got up to go to the bathroom her blood pressure dropped extremely low. The fellow held off on the catheter since Kelly was adamant about not wanting it.
Dad called to let me know this was all going on and that there was talk of her going into either ICU or to the POU (the observation unit in Sloan). I went over to find out exactly was going on when steroids were being mentioned since we are being weaned off of them (my worse nightmare going back on steroids which causes Kelly's blood pressure to go up and to throw her diabetes out of whack)... they told us that it would not be prednisone but hydrocortison, this would be high dose to help Kelly fight off the infection. We were told this was necessary since her own body being compromised could not draw enough strength to fight it on her own.
I leave to go back to be with Robert, that Dad calls to say they are going up to the POU....they know sooner get up there and get Kelly in the room that the Doctor decides Kelly is going to ICU via ambulance. ICU is across the street from Sloan.
So Kelly has been doing good in ICU but this is what stumps the Doctors is Kelly has always had the problems of low blood pressures cause her central line is infected, but this is not the case this time since she doesn't have one and she doesn't have any open sores to allow infection in. Kelly will have one more scan that they feel will be able to pinpoint where the source of infection is at and be able to take care of it.
Will update as we know when the scan will be done. Please continue to pray for all those battling this horrible disease.
Love,
Therese
Thursday, February 9, 2006 8:46 AM CST
Hey everybody!!!
Sorry that me and mom have not updated in a long time.
I was in the hospital in the being of Febuary. My PICC line got infected. The doctord told us the last time I got an infection that we would be in the hospital till the infection cleared but they sent us home within 3/4 days. Which i dont care where I am as long as I'm healthy and alive. While I was in my favorite nurse Cristina told me and my daddy that i was over doseing on my sugar injections and mom was not happy at all.
We had a great Christmas, Kaite did come up. Robert was so happy he really loves her. We will be back as one big happy family really soon (I hope)
Remember my 17th b-day is coming up, that means with
the doctors permission I can get drive
Tuesday, December 6, 2005 11:19 AM CST
Hi Gang,
Well its been a very very busy week with a few doctor appointments, a brief hospital stay and two holiday parties.
We have gone for our regular appointments in addition, we also visited Dr. Morris, our orthopedic doctor since Kelly has been having some pain in her lower back. Of course, they are saying that with the lowering of the steroids that Kelly might be feeling some additional aches and pains since they mask so much at the higher doses. Kelly had some xrays which were basically the same from last June when she had the back problems.
On Thursday, the Nascar Drivers visited the house. Kelly and Robert had so much fun trying to get all the drivers to sign a posters with all of their pictures on it. As a parent there is such gratitude to these wonderful men for taking time out of their busy schedules while in NY to put smiles on these children's faces.
After the drivers left, Kelly was having dinner in the dining room with her Dad and our friend Jenny when Kelly's arm starting have a seizure. Rob came to alert me that something was not quite right with Kelly. I went down to the dining room to check on her. We took her blood pressure as Kelly continued to eat her dinner. I was a bit concerned since Kelly's one pupil was so much more dilated then the other. So Kelly's like MOMMMMMMMMMMMMMMMM I am fineeeeeeeeeeeeeeeeeeee..........lol that is when we both know that Kelly is already fighting me not to call the doctors since it usually leads us to go to Urgent Care. So I call Dr. Boulad and he says bring her in. Well since Dad was here I said its your turn........LOL. Kelly had a CT scan and a MRI to make sure she did not have any bleeds in the brain. They decided that Kelly did have a seizure which seems to be a side effect from a year ago when she had grand mal seizures due to a medicine for immune suppresant became toxic for her. It would seem that Kelly will have to take anti seizure meds for the rest of her life.
Kelly was discharged early Saturday afternoon, just in time to come home and shower for the "Team Continuum Pat on the Back" party which they invited some of the children from Ronald McDonald House. They had live music and a magician for the kids. Santa made a surprise visit to distribute a small present to each child. It would seem that it was one of their most wanted gift on their Christmas list this year. A great time was had by all.
On the same night, Robert went with Dad and the rest of the House for "A Ride to the North Pole on Southwest Airlines". The kids enjoyed seeing the City from up so high. When the kids landed they were escorted by the Islip Police and Fire Dept.to Santa's Workshop. The kids dropped off their letters for Santa. Southest Airlines had a raffle for a mountain bike. Robert was the lucky winner of the night. (Mom is the unlucky one who has to get the bike home to NJ so Robert doesn't ride the bike in the hallways of the McDonald House........lol) Thanks to Rich and Steve for pulling this all together for the kids. 
On Monday night, Kelly,Robert and myself were invited to Sony Wonder Christmas Party that was hosted by Memorial Sloan-Kettering. We were given cards to access all the wonderful exhibits. Dr. O'Reilly was waiting for Kelly to come down since he had "someone" he wanted her to meet. As Head of Pediatrics , he ushered her to the front of the line. The person he wanted her to meet was BRUCE SPRINGSTEEN!!!!!!!! She was tickled pink to meet him. It was a nice event to attend.
As I always ask of my friends and family is to keep our little friend Bailee in your prayers. She is still in ICU and is making progress but it is in tiny baby steps. I also ask that you keep all our friends who are battling the biggest battle of their young lives in your thoughts and prayers.
Love,
Kelly and Therese
Saturday, November 26, 2005 11:22 PM CST
Hi Gang,
Its been a pretty busy week for Kelly and the rest of the family. On Thanksgiving, we went to the Macy's Day Parade. Kelly did not make it to seeing it due to her having some pain in her back due to prolong use of steroids. Her Dad took her back to Ronald McDonald House and she watched from the comfort of her bed.....lucky her..........lol. The parade is an awesome sight to see. The house makes arrangements for the kids to be indoors due to their compromised immune systems. We were in a 3 floor office building. We had breakfast of bagels, muffins and donuts. We returned to the house afterwards for our Thanksgiving Dinner, which was a great event that was held mid-afternoon. The staff from the house does all the cooking. We still miss not making our own cause we don't get leftovers.
After dinner was over, we were relaxing in our room when the front desk called to let us know that Robert was hurt. A couple of the kids were swinging an Elmo doll and Elmo's eye made contact with Robert's top front teeth. So off to the ER Robert and Dad went. We were told he would be ok until Monday when the Dental Clinic would be opened. It seems that even though the teeth were broken that they were not lose enough for an oral surgeon to be able to do anything.
Kelly and Mom went to see the new Harry Potter movie with the rest of the house. The kids all loved it but it was not Mom's cup of tea.
We had our usual Friday appointment with the doctors for IV for Kelly's antifungal meds and blood work. They told Kelly next week sometime they would put another picc line in for easier access. Kelly's veins won't hold up for to long since they are not the greatest as it is. So the sooner its done the better off she will be.
On Saturday, we all went to CBS studios for the morning show. Sorry Annie and Rose for waking you gals up so early!! But I figured you would want to see both the kids on television. This was arranged by "Team Continuum" which is an organization that the members are well known for running the NYC marathon and that they are into raising awareness for cancer patients to help with their immediate needs. The kids were part of the morning show in two spots outdoors where there were two Ferrari were used as the background for Ira Joe Fisher who does the weather for CBS. The kids were then taken into the studio for them to view the concert.
We then went to Lamborghini of Bergen County for all the kids to have their choice to ride in a lamborghini, ferrari, corvette and a bentley. To the folks who donated their time and cars, Thank You Thank You. The kids had smiles plastered across their faces all the way back into the city. Kelly,Robert and Dad got to ride in the Bentley for their first ride, then Kelly and Robert each had a ride in a Ferrari.
As always, I ask that you continue to pray for our friend Bailee who is still in ICU but is making progress. For all the children who are battling the biggest battle of their young lives.
Love Therese and Kelly.
Robert with Heath Bell of the NY Mets
Kelly and Robert with Heath Bell of the NY Mets
Thursday, November 10, 2005 9:43 PM CST
UPDATE:
Kelly was discharged on Sunday night. We were back in the day hospital yesterday afternoon with low blood presures. Kelly was given some fluids and cultures were taken. Please pray they come back negative. Hoping not to spend Thanksgiving in the hospital.
Hi Gang,
Well I guess we did not have them fingers and toes crossed hard enough! Kelly came back postive on cultures for grand postive rods again. They feel that when she was discharged on oral antibotics it was not strong enough to kill the bacteria. So Kelly will be doing at least a 14 day stint in the hospital. She is not very happy because she has to have a negative culture before they start counting the 14 days. So this could possiblely mean she will be in for Thanksgiving Day.
Kelly is not allowed out on any passes with the exception to go for her light therapy for her graft vs. host disease. They have lowered her steroids down to 30 mgs twice a day. They are hoping to start decreasing her on the alternate day to 30mgs in the am and 27.5 in the evenings. Each time we have done this in the past we get almost totally off and she has a major flair up. So we are hoping with her having light therapy and pentostatin this will not be the case. This is a slow process cause at times we run the risk of the blood pressure and diabetes going out of whack. I am hoping that both of these problems will not exist, cause we are really looking forward to getting home by the spring time if this all works out.
Kelly is being kept busy in the afternoons, her teacher, Mr. Murphy has no problems with teaching her while in the hospital. This way she won't fall so behind in her studies like last year. She has tomorrow off due to Veteran's Day.
If you get a chance please stop by our Aussie friend, Dylan, and wish him a Happy Birthday www.caringbridge.org/me/dylanhartung
As always, I ask you keep our little friend Bailee in your prayers as she is still in PICU. Please remember all the children in the McDonald House who are fighting the biggest battle of their young lives.
Love Always,
Therese and Kelly
Monday, November 7, 2005 11:25 AM CST
Hi Gang,
Kelly is back in the hospital. She was admitted on Sunday afternoon due to low blood pressure. They took cultures to see if another infection is brewing up for us. Kelly is not at all happy about being back in so soon after discharge on Wednesday night. If nothing grows, we can be discharged as early as Tuesday. So keep them fingers and toes crossed that we get kicked our of cell block M9 cell 935.............lol
As Kelly posted earlier, we had so much fun on Saturday at the Fun Run for McDonald House. It was so much fun to watch Robert running for Kelly. Robert and his friends all ran it together. They crossed the finish line and were so proud of themselves. Robert and Drew each know what its like to live the life with a sibling with cancer. Their lives are forever changed of what everyone considers to be normal, but they are such brave kids that they are so caring about their sisters. Good job boys on a job well done!!!!
Sunday, was the NY Marathon. The kids all had fun cheering on Fred's team which consist of doctors,nurses and volunteers from MSKCC. They also cheered on Rich Block. He is one of the workers from the Ronald McDonald House. This man is such a great person that all the kids just love him to death. He raises money from running this race to benefit the children,during the summer time Rich runs three major trips to Great Adventure, Dorney Park and Hershey Park. Thank You Rich for all you have done for our children. You are such a ray of sunshine to the families.
Kelly and I ask that you keep our friend Bailee in your prayers as she is still over in ICU at NY Preb. Hospital. Please don't forget the children who battle each day to beat this horrible disease.
Love,
Therese and Kelly
Saturday, November 5, 2005 6:55 PM CST
hey guys its Kelly. Today was a great day.
We went to the RMDH fun run. Robert and a
few of his friends Drew and another kid ran.
Robert and his friends came in at 3 mins and 45 secs
I helped with taking the kids form where the drinks
and snacks where to the start of the race.
On Thursday morning real early my Uncle Bobby went to
the hospital. He's in the ICU, just like Bailee. So pray
for their speedy recovery
Tuesday, November 1, 2005 2:22 PM CST
hey gang
this is kelly. I had a great time at RMDH.
Me and Robert had dinner together and talked
for awhile. He's my little angel.
Iwant to thank you all for signing my book
Please say a big pray for my friend bailee.
She is over in ICU. We miss you Bailee
I did get a pass yesterday but, it was a
very short visted.
I'm getting out tomorrow, and back to RMDH.
Monday, October 31, 2005 9:51 PM CST
Hi Gang,
HAPPY HALLOWEEN!!!!!!!!
Today was a very busy day for Kelly. The hospital had the kids parading around the impatient side of the hospital. They dropped Kelly's treats in a bag that was attached to her door since she is on isolation.
Then we were like a ping pong while they decided whether Kelly was going to go to light therapy today, since she was scheduled to get picc line pulled and replaced. They finally decided at 2pm to send her over for it since they were not sure they were going to be able to fit her in down at Special Sugeries. She comes back and they say she is a go for her new picc line. Wooooohooooooooooo we are on lucky 7 for a new access line. Hopefully this line will stay for the duration that we are up here.
Kelly was able to get back to the Penthouse for the Halloween Party. She did not make it back in time to trick or treat since that was done early in the afternoon. Kelly was happy to just get out of her room where she could be outside without being attached to an IV pole. We get back tonight and our night nurse was hoping to give Kelly the treat of being not hooked up except for her iv antibotics but the Doctors want Kelly to have fluids.
Once again, Kelly and I ask that you keep our dear little friend Bailee in your prayers. She is back across the street again in Pedi ICU. She has been having such a rough time lately with some breathing problems. She is Kelly's twin. I will try to upload a picture tomorrow of the two girls.
As always, please keep all the children from the Ronald McDonald House in your prayers as they fight the biggest battle of their young lives.
Love always,
Kelly and Therese
Saturday, October 29, 2005 10:51 AM CDT
Hi Gang,
Kelly finally made it up to the ped's floor on Friday night about 6pm. She was so happy to be up here due to her feeling comfy with the whole atmosphere. Unfortunately, Kelly has had numerous stays in the hospital that this is like her 2nd home.
We learned that cultures that were taken early Tuesday night came back with grand positive rods. So we were told once they could name the particular bug, it would be 10 days of IV antibotics before she could be discharged. So Halloween is out of the picture unless she can weedle a pass out of the Doctor for the night time activity at the Ronald McDonald House.
Please keep Kelly's friend Bailee(www.caringbridge.com/fl/bailee) in your prayers, she has been having a rough time lately and she is over in the ICU in NY Presbyterian Hospital. As always, please keep all the children who are battling this disease in your prayers.
Don't forget to sign the guestbook, Kelly loves to know who is stopping by to check on her.
Love,
Therese and Kelly
Wednesday, October 26, 2005 11:06 PM CDT
Hi Gang,
Yesterday was a busy day for Kelly. She had clinic for her microfungen iv drip. All things were good except we thought that she was a little red.... we put it off to maybe that she was due again for her chemo which is due this coming Friday.
Kelly was flaring up quite a bit and she had a low grade temp of 99.1 and was getting quite red in the face that I called the nurse practioner. She thought it was best that I bring her into Urgent Care to be seen. We get there and she is less red then when we left the Ronald McDonald House. She has no fever but Dr. Scaradovou decided to play it safe and take cultures from her picc line. Since Kelly is a diabetic she is more prone to infections in her picc line. Doc decided that I could take Kelly back to the Penthouse.
We get back, Kelly has dinner and is enjoying the Halloween party. She seems to be very quiet for anyone who knows Kelly,who is normally very social and outgoing. So the party is coming to an end that I send her upstairs to get ready for bed. I tell her not to forget to take her blood pressure. She is suppose to take it before her meds just in case she doesn't need one of the medicines because recently she has been dipping low but not low enough to do away with both blood pressure medicines.
Kelly told me her blood pressure was 90/50. So I recheck it and its still very low considering that it should be creeping up at this point. So I called to have Dr. Scaradovou paged..... it was decided that Kelly needed to come back to Urgent Care to be checked again. The bp was pretty low for the Doctor to not see her. So Kelly was admitted to the hospital.
Kelly was admitted into the hospital last night at 1030pm. They were pushing fluids on Kelly to raise the blood pressure to a more normal level. It took a bit of time. We were told around 230 am that Kelly would be spending the night in Urgent Care due to no open rooms up on the Pediatric floor.
They decided early Wednesday afternoon to move Kelly up to the Pediatric Day Hospital. I guess they needed the room down in Urgent Care for more critical patients. She was finally moved to her own room but it was not in pediatrics. She was put on an adult floor. She is doing good. Will update again tomorrow.
Please as always keep the children who are battling the disease in your prayers.
Love,
Therese
Monday, October 17, 2005 7:50 PM CDT
Hi Gang,
Well we had a pretty quiet weekend. On Saturday Kelly got to go to her first NHL Ranger game. The Rangers won 5-1 against the Atlanta Thrashers. She really enjoyed herself!!!! The tickets were donated to Ronald McDonald House. It is through the generosity of people that we have done so many things these past couple of months. Kelly has been to see a few plays. She has seen "The Lion King", "Beauty and the Beast", "Hairspray" and Chitty Chitty Bang Bang". We also have been to major league baseball games for the Yankees and Mets. As a parent, I can not say Thank You enough to the generosity of the people in NYC!!!!!!!!!!
I like to also thank all the people who have taken the time to sign Kelly's guestbook and that have sent cheerful cards to lift Kelly's spirits. It has made her very happy to receive mail. When she found out today that she had real mail, I swear she lit up like a Christmas Tree!!!!!! I like to thank Melissa and Dylan for their help in spreading the word that made this all possible. Please check out our little Aussie pal at: www.caringbridge.org/me/dylanhartung.
Tomorrow, we are back in clinic for our monthly IVIG which is antibodies that help her immune system....Its another long day with Kelly dancing with her IV pole through the day hospital.....lol. We also are hoping that we can also lower her steroids. The sooner we can get rid of them, hopefully her blood pressures and diabetes will go away to and we can finally go home!!!! The lowering of steroids always is dependent on how well her graft vs. host disease is doing. Hopefully with the combo of UVB radiation, pentostatin and the steroids we are finally getting a good hold on it so Kelly can resume being a typical teenager.
Robert is doing good with attending school in NY. Tomorrow is picture day for him, so tonight he is worrying about what he should be wearing. He wanted everyone to know that he is going to be running in the 7th Annual Kids Charity Fun Run on November5, 2005 in honor of Kelly. This race is sponsored by the Ronald McDonald House. If anyone is interested in sponsoring Robert, you can send it to us at the address listed below. Please make all checks payable to the Ronald McDonald House of NY/Kids Charity Fun Run.
Will update tomorrow after we get back from clinic. As always please keep our friend Bailee in your prayers as she is still in jail(hospital....LOL) fighting off an infection. Also all the children in the Ronald McDonald House that are fighting the biggest battle of their young lives!!!!
Love,
Therese and Kelly
Thursday, October 13, 2005 9:49 PM CDT
Hi Folks,
We met with the dermatologist yesterday, her graft vs. host seems to be holding at bay ...so far so good. We were also told that Kelly now needs to grease herself up since her skin is so dry, since the UVB radiation does not penetrate with dry skin, it actually bounces off the dry skin. So we will see tomorrow what happens with the fact that she is greased, if it will penetrate the skin better. If she is to red from it, she will have to back peddle to a lower amount of time.
Kelly went to the hospital today for her pentostatin. This is a chemo agent that helps with her graft vs.host disease. It is a long day in hospital for her. It is 3 hrs of hydration, 1/2 hour of medicine, and another 2 hrs of hydration. The doctors also did a slow taper of steroids since it has been 10 days since her last one. She is now down to 65mgs of steroids.
On the downside, we are battling Kelly with all the candy that is around "The House" for Halloween. We went out tonight to see the Ranger hockey game and she had a field day building gingerbread houses with the volunteers. It was one piece a candy for decoration on the house and one piece for Kelly to eat. But like any good parent I have an ace up my sleeve..........lol she is suppose to go see a concert on December 14 to see Staind. BBUTTTTTTTTTTTTTTTTTTTT if she does not start behaving and watching her diet, plans could change!!!!!!
Tomorrow Kelly goes back for some quick blood work and a quick IV called microfungen to prevent any antifungal disease.
Please keep Kelly's buddy in crime Bailee in your prayers, she is in the hospital with pneumonia. She is on the mend but this poor kid has been thru so much. As always please pray for all that are battling this disease.
Will update tomorrow.
Love,
Therese
Wednesday, October 12, 2005 10:01 PM CDT
Hey today I'm writing in my journal for the first time.
Today we went to UVB and we saw so doctors for a follow up
visit. Every few months we have to see them so they can evaluate me. Before we left it was raining cats and dogs.
We tried getting a taxi but couldn't, we had to walk in the rain.
Kelly
Wednesday, October 12, 2005 10:01 PM CDT
Hey today i'm writen in the journal for the first time.
Today we went to UVB and we saw so doctors for a follow up
visit. Every few months we have to see them so they can evaluated me. Before we left it was raining cats and dogs.
We tried getting a taxi but couldn't, we had to walk in the rain.
Just to tell everyone i'm gfetting ready for christmas and i have wish list at target and walmart
Sunday, October 9, 2005 8:05 PM CDT
Hi Folks,
Just a short update for you all. Yesterday, Kelly and I went to see Beauty and the Beast on Broadway. Kelly really enjoyed the play. She is hoping to get some tickets to see Mama Mia or Phantom of the Opera. She is enjoying the time going to see things cause with her she never knows when she is going to land back in hospital.............lol
Healthwise, she is doing good cause I am playing the warden as her as my prisoner......lol she tries to cheat but she can't get away with much in the house due to most of the parents know if I find out she got something not on her diet from them I will beat them.{evil grin} I allow her a cheat now and then as long as it is done with her meal. Not much of a spike in her sugars this way.
Kelly is doing ultraviolet radiation for her skin. We are up to a whopping 3 mins. We meet up with the dermatolist on Wednesday to see if there is any improvement on her skin. We are hoping that we are able to knock out the graft vs. host disease with this radiation. If we can't this UVB radiation is conditioning her skin for PUVA( pill plus UVA radiation). So please keep your fingers crossed that this is working for her.
We go back for our check up tomorrow where we are slowly weaning her down on the steroids. It has to be done slowly due to her diabetes, blood pressure and to avoid a flare up of her gvhd. If she flares up to much then unfortunately they up the steroids again. Steroids are a necessary evil for Kelly.
Will update again tomorrow with her progress tomorrow.
Therese
PS If you have time please drop Kelly a card she loves to get snail mail :))
Tuesday, October 4, 2005 4:09 PM CDT
Hi Folks,
Kelly was discharged today from the hospital. This was a relatively short stay for Kelly, only 14 days.........lol.
We will return to the clinic on Thursday for a check up.
Its a sad day at the McDonald House as we lost one of our friends Madison this morning. Kelly and I ask that you keep Madison's Mom, Dad and big brother, Taylor in your prayers. Its very hard when you live with these families for months and not to get close with them. Madison was such a sweet little girl who had the biggest smile for everyone. You can visit Madison's page at: www.caringbridge.org/la/madison
As a family we appreciate all the love and support we receive from each and everyone of you. Please keep all the children who are battling this disease in your prayers.
Love Kelly and Therese
Friday, September 23, 2005 8:19 PM CDT
Hi Folks
Just wanted to let you all know Kelly was admitted into the Pedi ICU at New York Presbyterian Hospital on Tuesday night.
We went into clinic on Tuesday. Everything was fine going into the exam but things changed drastically in a span of 15 mins. The exam started out on a normal note, temp was fine then came the blood pressure cuff and Kelly was shaking. Well the nurse told me she had to have the doctor check Kelly out and went out to find her. Kelly left the room to go to the bathroom and came back shivering and shaking. Well the doctor walks in and sees this and says oh Kelly, you are going for a short stay on the inpatient side. So we are sent into the bed area to start antibotics....her temp rose from 36.6 to a whopping 38.7 which is quite a fever.
Well things seem to calm down but as always the "Kelly factor" had to come into play. Her blood pressure was dipping down to low for the doctors. So it was decided that they needed to send her to ICU across the street cause there were no open beds in the observation unit at Sloan. The children in there could not be safely moved to the regular floor.
So we get to the other hospital and they are working on her and they put in 3 different types of iv lines. The first line was for a special blood pressure med to help raise it. The 2nd line is a temp. broviac in her groin that the antibotics go into. The third line was an old fashion iv line. Poor Kelly has such awful bruises from all of this being done.
The meds did their job and stablized her blood pressure within 12 hrs but Kelly was exhausted all day Wednesday. She was able to talk to us but her trying to open her eyes was just to hard for her on Wed.
But on Thursday when I returned in the morning she was wide awake and itching to eat. So docs wanted her to be bathed and sitting up in the chair cause their concern was for an inflamation to settle in her lungs. So Kelly sat up for almost 3 hrs. she also has to use a breathing excerciser to help the lungs to work at full capicity. She has had to have some help since her O2 level was dropping below the 95 percent level.
Kelly was suppose to go back to Sloan on Thursday but there was no beds so we were keeping our fingers crossed for today but Sloan is at 100 apacity for the entire hospital. So Kelly is just waiting for a bed to open up so she can go back to where she is comfy with everything.
Will update tomorrow. Thanks for checking in on Kelly.
PS: Picture is Kelly and Robert atthe play Chitty Chitty Bang Bang that the Ronald McDonald House took us to.
Therese
Friday, July 8, 2005 10:12 PM CDT
UPDATE Saturday July 9, 2005 12:00pm: Kelly is being discharged today, since the cultures in the lab were due to a contaminant not a true infection. So Kelly is on cloud 9 with the thought of getting out of the hospital this quickly. Hopefully, we will be able to get out for a walk around Central Park today. Will try to update soon.
Hi Folks,
Sorry for the gap in updates but the time just has been getting away from me since Robert and Kelly are done school for the year.
Kelly and I would like to say thanks Robert, Lisa and Jaime for stopping by last weekend. We enjoyed so much getting to see you. We hope to get down to the family reunion to see you all again. Keep them fingers crossed that we will get permission to leave the city!!!!!!!
On Monday, July 4th, we were treated to a fun filled BBQ compliments of the Ronald McDonald House and NY Police Dept. to watch the Macy's fireworks on The East River. I can't tell you how much both do for the children up here. The NYPD does so much for the RMDH. When we go on trips around the City they provide us with transportation. Sometimes the kids laugh really hard when they are told we are using a van or a bus that usually transports the prisoners, but as a parent I can't thank you enough for all you do for my children.
This week has been fun filled with appointments followed by Kelly going inpatient on Wed. night by the way of Urgent Care( mini ER room at Sloan Kettering).
We found out on Tuesday that Kelly is 100onor and CANCER FREE from her one year bone marrow biopsy!!!!!!!! Please take a moment to Thank GOD for helping Kelly through this ordeal.
We started a new chemo agent called pentostatin on Tuesday, to help Kelly with her Graft Verse Host Disease. She will receive this chemo agent every 2 weeks till they can start the UVB radiation. We had to go to clinic for it, she had to have hydration for 3hours before the 1/2 hr med infusion then another two hour hydration afterwards. She was running a low grade fever of 37.7c so the doctors decided that they would pull a culture from her new PICC line but decided that she could go back to Ronald McDonald House. Well Wednesday night around 930pm, I received a call from the resident on call to tell me that something grew in the culture from Tuesday and we needed to come into Urgent Care to be admitted up to the Pediatric Floor. Kelly was not a happy camper cause right now she is feeling good and the last place she wants to be is in the hospital. So off we go to Urgent Care where they start her on the antibotic called Vancomycin. Once we were almost finished with that we finally were transferred up to her room.
Kelly has been experiencing some back and shoulder pains which is due to her continued use of high steroids. We went today for a xray on her shoulder since early on Wednesday night she tripped going into the kitchen to make herself a little snack. The RMDH is in the process of renovations. They are in the process of laying new carpet in the Dining Room/ Kitchen Area. Guess Kelly's flip flop caught when entering from the carpet area into the tile area. But preliminary results from the xray show that everything is fine with the shoulder.
The doctors are a little concerned right now, since she is having problems with extremely high lipids and triglicerides(sp). So they have put Kelly on a new med which at the moment the name of the new drug is just escaping me. They have also put her on a 1200 calorie diet and low fat diet. I can tell ya she is not happy at all since steroids give her such a wicked appetite. Can you imagine always feeling hungry??? Which does not help the fact that her diabetes is a bit out of control also since her body just can not bounce back from the continued up and downs on the steroids!!!
Well that is all for now. Please take a moment to sign the guestbook since Kelly is always interested in knowing who has stopped by to check on her.
Love,
Kelly and Therese
Tuesday, June 14, 2005 10:19 PM CDT
Hello Folks,
Just a quick update on Kelly. She is in the hospital AGAIN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
We went for Kelly's monthly IVIG antibodies treatment. During the course of treatment Kelly spiked a temp. So the doctors decided to take cultures from her broviac. The cultures were taken at 4pm , lo and behold by 7 am this morning the nurse came in the room to tell us she had 2 bugs growing in the one line. It will be another 24 hrs before they know what type of bugs they are and which antibotic they will use to treat it effectively.
Kelly will be having surgery tomorrow to remove her broviac and have a temporary line put in. Please keep Kelly in your prayers, with any type of surgery there is always a risk. But with Kelly's current issues with high blood pressures and being diabetic puts her into a higher risk category. Please also keep Mom and Dad in them prayers that we survive Kelly not being able to eat from midnight until after the surgery. Since she is on high dose steroids which give her such an appetite. She will be such a bear with us until she can eat.
Kelly and I were hoping that her having a temperture was just a fluke, and it would correct itself on its own. But no such luck for us. We were hoping to go home for Kaity's graduation next week. Our nurse practioner, Heidi< told us that we would be in 7-10 days. That is on the short end of the stick. Mom is going to some begggin and pleading with the doctors for at least a 12 hr pass to be able to get home for the graduation ceremony. Kelly has not been home in over a year. We were looking forward to it. When things don't go smoothly for us, we just laugh and say its "The Kelly Factor".........LOL
If you would like to send her cards while she is in the hospital you can send them to :
Kelly Loftus
c/o Memorial Sloan Kettering Hospital
1275 York Ave. 9th Floor Rm 910
NYC, NY 10021
Will update again tomorrow after the surgery.
Love,
Therese
Saturday, May 28, 2005 10:46 PM CDT
Hiya Folks,
HAPPY FIRST ANNIVERSARY TO KELLY!!!!!!!!
Today is a huge mile stone for Kelly. It is her first year anniversary after transplant. As much as our stay in NYC was to be only three months, we have been here a full year now. It has not been an easy year but we have to Thank GOD she is here with us.
She has gone thru alot. Almost 6 weeks for the initial hospitalization for transplant. She has had way to many inpatient visits due to seizures, fevers, infections....(Mom doesn't like hospital one bit.......lol neither does Kelly). We still have stuff to do such as UVB radiation for Kelly's graft verse host disease(will address that later in this update), she has to go through immunizations all over again since they were wiped out with Chemotherapy and radiation.
I just can't say enough for the wonderful care Kelly has received while being a patient at Memorial-Sloan Kettering Hospital, the Doctors and Nurses are the greatest people!!!! Thanks to Dr. Boulad, Dr. Kernan, Dr. Small, Dr. O'Reilly and Dr. Prockop. Thanks to our wonderful nurse practioners Ann,Catherine, Heidi,and Joanne.
We are in the process of contacting Kelly's donor through our Social worker. Kelly started off the process by writing a letter to the donor to thank them for such a precious gift that they so generously gave to her. We as a family are hoping that the donor will agree to meeting us face to face sometime in the near future. As a parent there are no words to express our deepest appreciation and gratitude to this wonderful person who gave our child a second chance to have a life.
WEEKLY Update:
With it being one year post transplant we have alot of testing coming up in the next few weeks. Kelly has to have her one year bone marrow biopsy, an echo,a MRI and a cat scan to name a few of the tests. We are also waiting on authorization from insurance to do UVB radiation which will be done across the street from Sloan Kettering. Doctors explained to Kelly the radiation is comparable to going to a tanning salon. She would go 2-3 times a week for intervals beginning with 1 minute and maxing out at 5 mins over time. Maybe she will get a little color out of the deal........lol.
We are still battling with the side effects of steroids in her blood pressure and diabetes. Its quite a job trying to curb an appetite that is craving sugar and salt that these nasty steroids just make it that much worse. Kelly has been trying so hard to limit her intake of salt to keep her blood pressure levels within reason. This child deserves a medal because no matter what you eat there is some kind of salt content to it. Did you know whole milk has salt in it???????LOL
Thanks for visiting Kelly's page, please remember to sign her guestbook cause she likes to know who is checking in on her.
Therese
Tuesday, May 10, 2005 11:38 PM CDT
Hello Everyone,
Sorry for no update but I did one and I hit enter and pooffffffffffffff it was gone on me...........lol.
Well, this weekend was a bummer. We spent Friday night, Saturday afternoon, and Sunday from noon to 11pm at night in the Urgent Care Dept due to Kelly's high blood pressure issues. And most of Monday in the clinic also. They added two new meds to help with Kelly's blood pressure issues, but they will take a few days to kick in. Since Kelly is still on high doses of steroids some of the common side effects of them are high blood pressure, increase in her sugar levels and retention of fluids which causes swelling in her feet and hands.
On a happier note, last night Kelly and I were asked to join the Ronald McDonald House at their biggest fund raiser of the year at the Waldorf Astoria. The picture above, I took just before we left. Kelly had a great time dressing up for it. She actually was able to wear shoes instead of slippers to it. LOL granted they were dressy flip flops but still she was able to get her feet into them.
We finally get to the Waldorf, and we find a quiet corner away from the crowds to have some refreshments. There has to be well over 500 people in attendance at this event. Well our social worker and one of Kelly's main Docs find us. They both stop by to chat with us. Got a nice picture of Kelly with Doctor Boulad. I was thinking that we were just going to be able to sit back and enjoy the evening out, but Kelly's luck is always she gets "busted" by someone when we try to sneak out to do something for fun. We really did not get in any trouble but as a transplant patient, the Doctors like to keep the kids from being overly exposed since she has such a compromised immune system. Just imagine trying to keep a 16 year old who is feeling good at the moment down.......lol it not going to happen.
Ok I promise I will update at least once a week now faithfully.
Therese
Wednesday, May 4, 2005 11:56 PM CDT
Tuesday, April 12, 2005 11:30 PM CDT
Hey Folks,
We went to the clinic today, talked with the doctor about doing uvb radiation for Kelly's GVH (graft vs.host disease) but she would like for us to have a consult with a Dermatologist. We have an appointment next Monday at 2 pm so I will update you on that next week. She wants to rule out any other skin problems before she starts the radiation treatment. The treatment for this will be done across the street at New York Hospital. It is like going to a tanning salon.... its a very light type of radiation that they use to speed up of the process of the GVH.
We are also doing Occupational therapy to help Kelly with some motor skills due to heavy use of steroids that has caused some problems in her shoulder. This is to keep the shoulder from stiffening up on her. Kelly will be doing OT about 2 times a week. Its a quick appointment to teach her the excercises that my little angel is suppose to do at home..... but slow but sure she is working on them.
Therese
Monday, April 11, 2005 0:05 AM CDT
Just a brief update on Kelly.
We found out on Friday that Kelly's GVH(graft vs. host disease) has flaired up quite a bit that the doctors decided they needed to up her suppression drug to a full pill. To up her steroids until they can decide what is the next move in regards on how to treat it. Sunday night she was complaining about burning sensations in her hands which is a side effect of the GVH. She had this right after transplant was done. So off to the hospital later today to see how we are going to treat it.
Saturday, March 26, 2005 11:50 PM CST
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