Journal History
Click here to go back to the main page.
Saturday, June 3, 2006 11:02 AM CDT
this is the link directly to the video;
http://www.funkfuneralhome.com:8080/locweb/obit-video-tribute.jsp?site=0181&id=8353
Saturday, June 3, 2006 11:00 AM CDT
click on amandas video tribute to see slideshow;
http://www.funkfuneralhome.com:8080/locweb/service.jsp?site=0181&key=currentservices#
Friday, June 2, 2006 2:12 PM CDT
Hello this is amanda's sister emily. my mom wanted me to let everyone know that yesterday at about 8:15 in the morning, amanda passed away. It happened peacefully and without any sign of struggle which made things alot easier for all of us to take in. i miss her more than anything and hope she knows how much i love her and that theres an endless amount of people that feel the same way.
Thursday, April 27, 2006 7:51 AM CDT
I haven't written because I haven't wanted to see the words in front of me I'm about to type -- Amanda has relapsed for the last time and this time, there is no hope of a cure.
Amanda's spirits are still high but she knows she just had her last birthday and she like her sister, Dad & I, just go about each day -- trying to be happy-- trying to keep busy. Amanda doesn't have bad days. She's so smart and understands why the things she feels today are happening and is tolerant of the many day (some night) hospital stays and is more than anything just tired. She sleeps alot and trying to interupt that by pouring her into the car ea morning doesn't allow much for the real sleep she needs.
It's Thursday -- I just told my employer I am having severe fatigue myself and have to use unplanned vacation days since her relapse -- just to trying to get my own head on straight. They have been wonderful to us.
It's still not real. This isn't happening. We are in denial -- all of us and frankly, as that protection begins slowly to peel away -- we're left with a kind of awful despiration that you have to fight off. So far, the girls have been busy enough so as to not have much if any time left alone with their own thoughts. To me, that's my goal as a mother -- to keep us all busy and happy in the moment for as long as possible.
Em & I have both started an anti-depressant/attention deficite medicine that we both hope will allow us to regain our functionality. Em has been ok so far but not without a team surrounding her with therapy, tutoring, guidance conslrs, etc helping her deal with it all -- just trying to stay on track but I'm slipping -- I thinks we all are. Our days are so finite. I can't deal with that. Hoping this medicine kicks in at least enough to help me focus on work from home which I'm trying to regain productivity.
We are scared. We are not used to the absence of a back up plan -- there is no saftey net any more and that realization is so new and so hard for us. We don't know what to do except keep busy.
Amanda had a great birthday party. She invited all her friends and just about all were able to come for bowling and a sleepover. Got a great deal on the rental of a Cadallaic Escalade for the same $$ as a minivan rental, and it was fun taking them bowlong in that. The next day (Sat 4/15), many of her relatives from NJ , PA arrived for a day of fun-- stunted a bit when we found our local mini golf was still closed for teh season!! The beginning of Easter weekend and the start of spring break & they remained closed!!?? We had a good visit anyway -- we were off to Georges Pizza for lunch then back for some backyard oplay with our little cousin (my nehpew) Bryce, almost 2, and his sister Brianna - my niece, almost 4. I (embarrasingly) had an overwhelming bout of fatigue -- needing to lay down during their time here. I was nausous and not wanting to be around Amanda or any of the kids or adults not knowing what was going on with me. Guess it was just all the hub bub of getting ready for her birthday, the holiday, the news, work,-- it all just got to me I guess. I was better later that night and fine the next day.
We held off starting Amanda on a new series of oral chemo so she could have her birthday without suffering any of the potential yucky effects in front of her friends. Saturday night though, I had to start her on (among other things) thilidimide!! Remember the drug fronm the 60's that caused all those awful birth defects? She's on it, etopicide and a few other new drugs (new for her). Just hoping it gives us a little more time with her. She needed a few days to get over the extreme tiredness from the thilidimide but by Tues or so, she was ok but we needed to go o the clinic Tues, Wed & Thurs for blood work and blood products. She'll rely heavily from here out on blood products to sustain her.
Last Sun 4/23, the Hole in the Wall Gang Camp opened up for the day -- just for her!! It was a Celebrate Amanda Day camp day and so many of her family and friends, their families and teachers, Dr Hagstrom and his 2 girls!! , Dr Gillen, and 5 of her nurses -- even Tania and her clan came down from VT just for the event!! Amanda was so happy to see her! Our minister and his family came and many of my co workers and Em's BF's family and several CCMC families. It rained but it didn't matter -- we enjoyed Kevin Rice and Jill Basalie - camp counsleor's songs and fun. Pizza, soft drinks, snacks, a beautiful cake -- tables in the cafeteria all decorated with nice flower center pieces, balloons -- they even lit the fire place! It was such a great time. Thank you so much to Wades' World -- Bonnie, Kevin, Alan -- for thinking up this wonderful day. Shortly after the yearly Wade's World (WW)fund raiser event that my girls & I had such a great time at, Bonnie called and said that WW wanted to do something for Amanda and she suggested a party!! Amanda & I had been talking about throwing such a party @ some point. Bonnine -- knowing better than anyone that 'the time is now' contacted Karen Allen at the camp who not only agreed!! but said they'd (the camp) foot the bill! Thank you so very. very much Karen & THITWGC!! Thank you Bonnie, Alan, Kevin!! Of coarse, brought Bonnie back to coming up with another offering for Amanda -- some very nice ideas floating out there.
That night after the camp day, I said my good-byes to everyone -- the last of which was Dr H -- just he & his girls in the arts & crafts room -- enjoying time with his girls -- he reminded me about a few meds and that it was time do double up on the thalidmide and that night I gave her 2 pills (along with all her suuall) and the next day, she slept til 2:30 in the afternoon!! I jiggled her ea hour just making sure shw was alright. Since then, this med has pretty much kicked her butt and its been hard getting her to the clinic ea day. Today is thurs, I haven't worked all week and we're just home, letting her sleep.
I met with my wonderful minister yesterday and we have begun having some serious discussions we better off having now than later and he urged me to get this update out and reminded me that there are many,many of you our there that want to know..
Thanks REv Keirstead. Your guidance and and company as aloway but esp now, is largely what's keeping me half sane. Rob & I have 2 great families supporting us all and we are vey very fortune for that. Thanks to both families as we all try to deal.
I love my girls so.....
Tuesday, April 4, 2006 8:37 AM CDT
It's back.
We're devastated. Pray for her.
Judy
Thursday, January 12, 2006 10:17 AM CST
Hello.
Still in Seattle. Still doing well. Still can't wait for our departure date.
Amanda is having her exit testing this & next week. Yesterday she had another bone marrow aspiration. If its anything bad, we'll hear today. Barring that, we're pretty cleared for leaving maybe week after this (hoping for 1/26 or so).
**** Update -- It's 4pm here 1/12 -- just got off phone w/ the clinic & the worry we experienced yesterday & today (falling neutraphils) was for naught. They they're convinced results conclusively show there's no disease in the cell sampling. We had a fairly huge scare earlier this morning when some new phyician's asst came stompping in saying she's been watching her neutraphils (her ANC)drop over the last 3 weeks (ok -- how bout telling US??!) but they're convinced it can be explained by her steroid wean. Whew ****
We'll miss so many people. One of my first entries since coming here said something about us wishing people were nicer. Sorry I never retracted that -- people have been more than kind. We've made some lifelong friends. Thanks Bruce, Katherine & Sarah. We'll miss you. Hoping for one last Moka's coffee -- you may have gone already. Thanks to the Weeds. Our island friends. Tom, Kate, Cora & Hailey. You opened your hearts & home to us & I'm forever grateful. You made our Seattle experience a great one. Capt George -- how great are you! He's sailed around the world on his beautiful Mallory Todd & now he's here sharing her with Seattle Cancer Care Alliance families and friends. George exists to make others happy. We'll never forget the good times on your boat sailing or just docked! Keep up your great work. To Monica @ SCCA -- Thank you! We'll miss you! So glad you were our very own nurse guiding us through all this. You are a hero. We were frightened that we would never receive the great care and love we were used to in CT but you've shown us that nurses are nurses -- doesn't matter where we go, a good pediatric oncology nurse will be there to receive us. To our scheduler Debbie -- thanks for making your job look so easy. You made it easy for us. To our doctors Woolfrey, Carpenter & Sanders --- thanks for doing such a good job. Thanks for letting her creep into your hearts (its impossible to keep her out). We'll see you next year. Thanks Marilyn, Glenn, Linda, Cora, Jill (& shhhhh... Kevin) not to mention her sister Em (!!) for coming out. It's not as if we left for Boston -- we're out here in Washington State for goodness sake!! You guys truly know what it takes to get a little girl well. We love you. Thank you Hutch School! To Margaret -- good luck during your time away. Amanda really loved school with you. She misses you. You were great with us. Kathy, Myrna Eileen -- a published author, a research scientist... these were Amanda's awesome tutors. I and parents to come are thankful such a fantastic facility exists for patients and their brothers and sisters. Classes of 5 to 1 or now 1:1 made for some great learning experiences. Plenty of field trips (in the neginning) too were a fun part of their daily adventures. And Eddy. We love Eddy. He drives the van to & from the clinic & to & from the grocery store. He hears everything -- knows everyone & everybody loves him. If Amanda was Dorothy, he'd be the scarecrow. I think we'll miss him most of all.
So, Dr Hagstrom -- you're not getting rid of us that easy! Get ready! We're coming home!!!
Monday, December 19, 2005 7:33 PM CST
To our Dear Family and Friends,
Another year over. The toughest one yet. This year finds Amanda & I away from home and our family, friends, school and work. Being in Seattle so far away from it all, makes us appreciate how lucky we are to have the family and friends we do. We miss being home but Amanda and I are fine.
Our lives still center around getting Amanda well once and for all but we are happy to still be fighting the good fight. It hasn’t been easy. Our goal is normalcy – getting my daughters & I back on track. After her third relapse, we knew our options were becoming more finite. The thought of having to come out to Seattle terrified us at the same time it gave back the hope needed to face this new treatment plan -- the hope it would work this time. So far it has, though as of this writing we again find ourselves waiting for more test results telling us whether her cancer is present or not. Last month there was no sign of it. Now its day 60 after transplant and we anticipate another clean result. This has become our life. We try to live each day as if nothing is out of the ordinary. Sometimes we’re pretty convincing, sometimes no. We miss Ct Children’s Med Center but we’re coping well with our new medical team.
Last Christmas when we knew we would have to face putting her through transplant again, it was frightening. It loomed large but we’re here now and things fell into place much easier than I anticipated. In another 5-6 weeks we hope to be home. We can’t wait. We’ve been here since Sept.
Emily has been staying with her father and still struggles with her school work. She’s otherwise happy and enjoys her friends. She and her dad will be here at the end of the week for the holiday. I miss her so much.
It’s been a whirlwind year starting with Amanda’s Make-A-Wish Trip to Disney (FL). She came home to a new puppy she loves and misses more than anything. A black German Shepard ‘Roo’ (aka Chloe). A second wish trip landed us back in Disney this time staying at one of their resorts. In between all this were trips and admissions to the hospital, school, work, more trips to the hospital and clinic, chemo, bone marrow aspirations, a couple central veinus lines (or Hickman cathedars – Dr. Hickman is here at the Seattle Cancer Care Alliance where we go!) , summer camp -- all the while receiving the love and support from so many. Looking around our temporary apartment, we see tons of cards and gifts from all over the world! Amanda loves to go down to the lobby where FedEx drops off packages looking for her name on one and when it happens, the plant lights up. She gets so excited.
We’ve met so many wonderful people in Seattle. The apartment we’re in is all cancer families here for treatment from all over -- each having their own story to tell. A family from Turkey just left. We celebrate each family’s successful departure and mourn for those who won’t make it through.
Amanda sees each day as an adventure. Dr. Hagstrom said it best when he said ‘..she searches for and holds tight to the good things around her.’ She’s always skipping and happy to face whatever the day brings. I have learned so much from both my girls about how to face adversity and keep smiling.
We are well. We are happy and we wish to express our thanks to all for making a place for us in your hearts. We’ll beat this. We can’t wait to come home.
Wishing you all peace, love, good health and prosperity. Merry Christmas. Happy New Year.
Love,
Judy, Emily & Amanda
Thursday, November 10, 2005 7:47 PM CST
Hello everyone.
Amanda is good. She was transplanted Wed into Thurs 10/18-19. The cells arrived at about 11pm and finished running around 2am. It was a long night. I watched her til the morning and her nurses were in and out all night watching her vital signs. She was fine. I wish I could remember the floor nurse manager (could have been the phyiciann's asst) but she was great. Very ceremonial -- an hour before, she announced the cell's arrival, then each 20 min or so she would say "... it's alomst time..", etc. Then, in she carried them -- making these trumpet sounds. She was fun. Amanda had her own nurse that night and was positioned right next to the nurses sta.
We've been back & forth the the clinic ea day -- sometimes several times ea day but its good to know she's under such a watchful eye. Transplant time wasn't stress free though. The next day, in marches the line of Drs -- the attending, fellow, nurses, p.a., soc workers and the attending told me that Amanda is malnourished -- that she is underweight to the extent that this attending felt that she needed a feeding tube!! I said -- "Let me think about it - no." Her weight hadn't changed for the past year and if she was 'malnourished' & supposed to have achieved a certain weight by a certain time, then they had plenty of time to get her ready for transplant. She shouldn't be penalaized for their failure to act. It sucks to have your kid suddenly in front of another Dr & have them strike their sentence seemingly without regard to her. She's been on TPN -- a bag of fluid ea night that runs for 15 hrs giving her vitamines, minerals and the calories she needs to slowly gain weight at the same time, pumping her up with fluids she needs to keep her kidneys flushed. Necessary due to the chemo & radiation proir to transplant. There's no way she could drink the amount she needs to. I asked for TPN instead of the feeding tube.
Amanda wishes she could be back w/ the 3 other students at her new school. She is tutored 1 hr per day and she's doing very good -- in fact finished a book her Bristol CT school is reading in one day!!
She's getting ready for a visit from 2 of her camp counselors from Hole in the Wall Gang Camp -- Cora and Jill. They will get here tomorrow night and be with her throughout the weekend. Way cool. She can't wait. I'll get caught up on some work.
My brother Glenn & his wife Linda here here 10/25-11/1 and Amanda had a great time sleelping over with them at the Marriott ea night. They were great. Amanda was sad to see them go. We're hoping my brogher David and maybe my Mom will come in Dec. In between then is Thanksgiving when her sister Em & her father will be here. This has really worked out for her. Thenks Glenn, Linda, Cora & Jill!! Kevin Rice -- we'll be ready for you any time now!! Call us!! You'd be a very welcomed visitor too!
I'll try to add to this later. For now I'll just leave you with our next benchmark date. In about a week, she has another bone marrow aspiration and another chemistry that will tell is how many of her own cells are still present and what percent are the 1st and 2nd donor's. Appearance of the 2nd donor cells is what we're very interested in seeing. It'll tell us whether engraftment is taking place. This and looking for cancer cells is what we'll look for then.
So far, so good. Thank you everyone for your support!!
Judy
Tuesday, October 4, 2005 9:16 PM CDT
Okay so, these stupid tests take forever, but there just about done. This is like my last weekend to actually do stuff before I start to feel crappy.This weekend we're probablly going to go to the mall so I can get some Christmas shopping done before all the stores are packed around Thanksgiving. I already know what I'm getting Dad, Em and Roo, (my puppy), but I have no clue what to get Mom. A couple days ago we went to Pike's Place Market and I got Roo a Christmas stocking. I'm going to fill it up with treats and such and send it to either Aunt Deb's or Aunt Bet's house,(whose ever house Roo's at while Dad and Em are here)a couple days before Christmas so she can get it and be very happy on Christmas. For Em's Birthday ( Oct.11) I'm going to send her the shirt I got her in Vegas. HAPPY BIRTHDAY EMERIE! Anyway I miss home so much! I talk to Dad, Em, and Roo every day but I'm still homesick. One thing I miss the most is Dads cookin. Also I miss playing catch and frisbee with Roo and watching her sleep at the foot of my bed.WhenEm and Dad come on Thanksging I'm going to tackle them in the airport and break Dad's hip again! (Just kidding) I'm looking forward to talking to my friends on AIM with my new laptop Mrs. Tedesco generously sent checks for Em and I to get. She's amazing! My teachers will be happy to no I love my school and here, I'm cosidered a " High School student." My school is so small!It's one room with three small rooms connected to it for high school, middle school and elementary school. By the way, here I'm in high school! In my class there are three 10th graders, two 8th graders and 1 9th grader. Two of the 10th graders are from Hawaii! Thank you to all the people who came to my party and thanks for keeping my in your thoughts!
Love,
Amanda
Wednesday, September 28, 2005 10:11 PM CDT
Baseline tests have been made and Amanda & I are (still) working on getting into a groove. So far, so good. We have a better comfort level now and we're confident Seattle Cancer Care Alliance (aka Fred Hutchinson Cancer Center -- the clinic we go to every day), Children's Hospital and Medical Center and University of Washington are VERY on top of things. We have had every exam known to man and no bad news. Even her bone marrow aspiration done on Mon was clean. Had it not been, we could have been sent home (!!??). yea. Our phyician's asst. said that if her aspiration and lumbar puncture showed signs of cancer, we could have been sent home!! no kidding!! I asked whether add'l chemo would be ordered and he shook his head and said it would be up to the drs and us as family as to whether we would place her at such a high risk- giving us the option to just return home (!!). My jaw dropped to the floor & I was ready to get into a loud debate but I kept my mouth shut (Amanda was right there) & decided to wait for the result which as usual was a good one. Amanda's little body always does what we need it to. We'll just go forward happy we have a clean bill of health so far.
Transplant though has been pushed back a week-- the donor collection center where harvest will be made, for whateve reason, needs to put off harvest til 10/18 (from 10/11) which places Amanda at an additional risk of the cancer creeping back from now til then. For the past 4 mos or so, she's recv'd chemo ea 30 days so the probability of it's rearing its ugly head is good. We'll need more conversations.
Tuesday, September 20, 2005 11:55 PM CDT
Dear Readers,
We're here. Mom, we're fine.
We landed in Las Vegas at 8:30 (pst) and yes --Amanda RAN to the airport slot machines. Not to worry -- she was booted off, not by her mother, but by the slot machine bouncer. It was great. She got in a few 'pulls' before getting bounced. She loved it. Took off again and landed in Seattle at about 10:30 pm (pst) and to our hotel around 12:00 am (3am eastern time!).
We were up by 6:30 am (not talking est anymore..), checked out of the Marriott and into The Peter Gross House (PGH) for 8am then it was off to the Seattle Cancer Care Alliance (SCCA)clinic in time (yes mom, ON TIME) for our 10am apt. At this clinic, you don't get the warm fuzzys we're accustomed to @ CCMC -- its not a pediactric clinic. Only a small corner of the bone marrow floor caters to ped oncology -- the majority of patients are adults. They're not used to Amanda's candor and willingness to share personal insights and stories. You'll get a mere "ah huh" then its on to the next question in their littany. She's not disappointed or in any sort of dispare -- they'll just have to get used to US.
It was ok. Very busy there this 1st day. Orientation is always a dizzying experience. With every appointment and proceedure on a schedule, we're not worried about where to go or who to see. Its all written down for us (now where did I put that schedule...).
Getting a bunch of baseline tests & 'meet & greets' taken care of this week. We're back & forth between the clinic 90 percent the time w/ some apts @ Children's Hosp w/ one apt week after next at Univ of Wa Med Center.
Getting around so far has been ok. Tough w/out a car though. It's like San Francisco here. Killer Hills. Walking uphill has your nose inches away from the pavement its so steep. Uphill to the clinic, downhill back. Guess which way we'll be taking the shuttle? Only a 15 min walk. It's ok. Shuttles run from PGH at 9am and end at 5pm. Before or after that, its taxis. We'll see how all this goes. Travel, meals and living expensses are all coverred so we'll have to get good at treating receipts like money -- sending them in propmtly for reimbursement.
I am ok with everything so far -- just wish people here (Seattle) were nicer. Seems like there's not too many native Seattlites. Quite a mix of cultures and social strata -- seen way too many homeless. Amanda gets so upset. The hospitals though, attract people from all over the world so its cool to see that. The apartment building tennants are the greatest. Can't do enough for you. Staff here a bit diffrent -- we've learned we learn more from the tennants than the apt manager tells you. Our apartment is ok. We have one of the bigger single bedroom units but still is kindov small. OK for just us. No curtains (hmmm..) and absolutely no supplies -- not a paper towel, no hand soap, not an ice cube, no salt & pepper, etc. That supprised us sort of.. you'd think there'd be a salt shaker!! The shuttle here takes tennants to & from the grocery store a couple times a day but the last run is 2pm so doesn't look like our schedule will ever allow us to take advantage of that. Spent over $25 in taxi fare to get to & from the grocery store. Not complaing (ok maybe a little) but only because after coming back from a very long clinic day then back from grocerys, we learned (from a tennant not from the apt mgr) that there's a wealth of staples in a closet that people leave behind because they don't want to fly home with the stuff they haven't used up. I haven't seen this closet but I envision 10,000 salt & pepper shakers w/ just as many trash bags, paper towels & laundry detergent. That closet would be the first stop I'd make w/ new cancer familys I think.
Anyway, we're somewhat stocked up. Amanda's electric skooter has been shipped here - should arrive in the next week. Haven't (so far) found too many things we forgot.
We're ok. Scenery is great. We thought we were right on Lake Union but we're a few blocks away. We didn't have the energy or stamina to explore. We'll get to it.
Amanda feels & looks great. She's still on a bit of a downswing from the last chemo she recv'd. Platelet transfusion tomorrow -- red blood cells Thurs. She was in bed by 7:30. It's 11 & I'm pooped. Got some (of my own) work done tonight. Thrilled that I'm connected (computer) with most of the tools I need. I still have to read through a mountain of consent forms by tomorrow's 10am apt. We have a meeting w/ one of the doctors tomorrow so I'll need to get through that stuff now. Troubled that Amanda will NEVER be seen by a doctor. We'll have meetings but no exam done by a doctor. Its all phyicians asst. I don't get that. How can a doctor make decisions w/ out touching or listening to her? We have to trust they have this down.
That's just our quick update -- wanted to let everyone know we're ok & doing fine (under Amanda's direction).
Thank you everyone who came to Amanda's party. It was a great day. Thank you Marjorie Tedesco. You're amazing. We love what you have done for Emily & Amanda. Thank you all so much.
Love and thanks to all,
Judy
Friday, August 26, 2005 2:49 PM CDT
You are Invited!!!!
Come to Amanda Osterby’s Good Bye Party
Sat. Sept 3, 2005 (rain or shine)
1pm-6pm
14 Laird Drive, Bisrtol, CT
Please come and wish Amanda well as she sets out for this important part of her journey.
She departs (approx) Sept 15th for treatment in Seattle WA where she will receive another bone marrow transplant.
We encourage all of her family, friends, educators, medical staff, support givers to attend!!
Monday, August 1, 2005 9:06 PM CDT
Since last writing we've been to Disney, seen family in Sarasota, had another 2 hospital admissions, had a date with the operating room to get her cathedar (her 'tubey') in her chest (temporarily) removed, the girls have been to Rhode Island for a weeks vacation w/ their dad and family and spent time in NJ with family. You'd think there had been 3 mos instead of just one since our last update!!
Amanda's still in remission. Her counts finally started climbing back after last Wednesday's clinic apt. Before then, she needed a few platlete and red blood cell transfusions (Dr Nate got her all tanked up before her date with the OR and subsequent trip to RI). I was worried this recovery took so long... lots of anguish these past few weeks..
We thought we had 2 good donors -- a primary and a back up but they didn't respond. We're focusing in on a person we believe is from the US who was actually passed up for the 2002 transplant only to discover there had been a typo -- something was transposed. Now it appears she (we think its a female)may be just as good a match as the other 2. We're still wtg confirmation.
Amanda getting her 'tubey' out was kindov awful. We find it particularily troubling when hospital staff comfort her before a proceedure telling her "..not to worry, it won't hurt..." only to find their words to be not quite so afterward. She woke up in ALOT of pain and her only words through her tears were "they lied..". She knows no one lied to her -- they just didn't fully recognize that when a tubey is in for abt 2 yrs -- there's a certain amount of 'digging out' that can happen. She needs to trust the people around her. We loose that & its all over.
She was on oxicodone (a morphene-type drug) for a couple days afterward. I freaked out a bit because I sent her off to RI that way... She was ok by Sun (they left Sat). They put a couple stitches she'll get out this week. She went SWIMMING!! one of the reasons to remove it when we did. She'll have it out for camp too.
I'll meet my mom & sister-in-law 1/2 way to NJ after work tomorrow when I'll pick up Mand (who left for NJ the same day she got back from RI!!) and exchange her for her sister! Em will stay til Sat. Amanda has a clinic apt wed (an all-dayer -- she'll get other meds and have counts drawn) then for her, its off the Hold in the Wall Gang Camp (readers - PLEASE take a virtual tour of the camp -- Google on: The Hole in the Wall Gang Camp). Shell be there for a week. I'm still wtg on whether Em can go to the sibling session this year or not (she can really use it -- we're so in the thick of it.. Em needs to be around kids in her shoes..).
Em is ok. She has a killer tan (I know...believe me I am not a supporter of sunbathing.. but ...she really looks nice and healthy though..) and her beautiful blond hair that she colored BLACK (w/out my permission)is ever so slowly working its way out. We just got back from the salon where she got highlights and low lights and some blending stuff that makes her new blond growth blend w/ the dark stuff. She's happy.
So much on our minds. I actually think I had a bit of an anxiety or panic episode today at work. I ended up leaving a bit early thinking I was coming down w/ something -- I dropped Em at the hair place & layed down for a bit and ate something, took tylenol. Felt better.
I found insurance reimburses our airfare , living expense and food 100 percent but its coming up with that initial $$ for plane tickets, etc (can't meet my regular living expenses -- how are people supposed to come up with plane tickets when you live hand to mouth?). Big brother Glenn steps in -- that's how. He'll cover it til the ins kicks in -- a tremendous relief. Thanks, Glenn. Stuff like that -- there's 100 items I need to get through. We leave in 4 to 6 weeks (of coarse that was told to us last week -- so we're leaving in 3 - 5 weeks). I'm so overwhelmed I'm not getting much sleep. Things will work out I know -- my church family is so supportive and Rev Keirstead is so taking care of things keeping us afloat financially through his management of the 'Fund'. I don't know what I would ever do. Thank you so much to the contributors. Between him & Dr Nate who so carefully orchestrated Amanda's summer dodging all her plans while getting in the rounds of chemo and clinic apts she needs, we're in good hands. I'm so glad. Getting more & more tense by the day though. Can't bear the thought of saying good-bye to Em for so long... I can't stand that thought. And Amanda -- how do I keep her happy and engaged for the duration?? Already she brings tears to your eyes when you watch her play with her dog Chloe she loves so much.. I just don't know.
I guess that's all I can handle for now.
I haven't really been able to express this in the past for several ressons but my employeer is the absolute greatest. I am so proud and pleased that my mgmt group is so supportive. They have been so caring during all this. There are no words -- I'm just very humbled by their actions..
Thanks Mr & Mrs Alden and to the Tripp's, my boss Tracy S, my executive team, my Liliya, thanks Mom, thanks Dad (I miss you) and to by brother Andy who a week or so ago finished the Lake Placid Iron Man Trialathalon!! -- raising money for the Leukemia and Lymphoma Society (not just finishing but finishing in the top of his age group -- he's 40). Thank you Glenn and Donna (my sister drove here from PA w/ my niece Linda to spring clean -- she loves us very much!). Thank you too to my sister-in-law Lillian who with her husband (my brother) David are always there for us. Guess I have a pretty great family. Everyone has been great. Thanks to Marcy Spellman and husband and to Don C -- I'll miss you. Good luck and God speed.
Also to my brothers -- happy birthday ! David 7/31 & Andy 7/29.
---------------------------------------
PASTA DINNER
for
AMANDA OSTERBY
Monies raised will help Amanda receive a 2nd bone marrow transplant
Read more about Amanda visit “www2.caringbridge.org/ct/amandaosterby”
Saturday, August 27, 2005 6:00pm to ?
DJ Raffle
Franco-American Club, 95 Liberty Street, Meriden
Tickets $10.00 per person
Tickets available
Any questions see Harold Rodrique
(203)500-9520
Donations to the Amanda Fund can be made by contacting:
The Amanda Osterby Fund
c/o First Congregational Church of Bristol
31 Maple Street
Bristol, CT 06010
(860)583-6597
Friday, June 24, 2005 7:03 PM CDT
** Donor Update -- Think we may have one (already!!!!)
** Wish Trip Update -- Read on!!
Mon (6/27) we leave for DISNEY!!! The Marty Lyons Foundation granted her another wish!! Karlee Ann and family thank you !! It was you guys that paved the way for us!! Thanks Tina! So Mon-Thurs we'll be at Disney right in on the of the resorts!! How cool is that!! Amanda (since school got our 6/20) has been 'jonesen' for homework (if you know her, you won't think this is odd..) and she spent today putting together an itinerary. Don't think there's much time to think in there. It'll be fun. Her real wish (no doubt) is just to have her little family (we're divorced) together for a time. We leave Thurs evening from Disney driving to Sarasota where her dad's mom & step-father gave us the keys to their home until Sat when we leave early to try to get in Universal before our 4:30 flight home. Very exciting.
We were in the hosiptal again -- week before last. At exactly day 11 after the mylotage, just like last time we were admitted (tue-fri) for fever. This time though no PICU thank God! Uneventful.
Last day of school and Amanda came home with all A's -- just a couple of B's. Very proud. Em seems to pull out a decent year after all (she just finished up today actually -- with her tutor. She was able to benefit from an adjusted schedule w/turoring as apart of the ADA Act she got extra time to complete certain tasks. Proud of her too! It was a diffucult school year for us all.
And yeah -- donor -- we think we have one!!! -- maybe fron England. Seattle zeroing in on that one -- we'll need a back up as well. Insurance obsticles -- good news -- they'll cover it. Bad news they don't cover the search fee which can go as huigh as $25,000!!! Upsetting, happy week, We're trying to apply for grants, etc. from various sources. Hoping to not have to put such a dent in the Amanda Fund which has a balance not high enough to absorb this and all the other co-pays and deductibles. Worried some. God (and the good people around us) provides. There are about 100 potential matches !!! She is part of a large pool of geno types. The fact that she's of that northern eurpoean decent places her in a larger group in the search. If she were from some obscure corner of the world that may not have a large contributing population on registry ready to donate those same 'obscure' cells, she'd be in a tough spot. We hope to get that perfect match. I'll let you know for sure.
Had been worried this search fee would bring the process to a halt until I was able to send them a check but they went forward without this getting in the way.
We get back from Disney and may run into see (NJ) grandma then we want to bring grandma back here because we're back in the hospital 7/5 for heavy chemo (will loose her hair again..). Having my mom here will allow me to get into work some. Then she wants her tubey out for her next (Rhode Island) vacation and for camp.
Thank you Marcie Spellman and Time for Life and her husband and their restaurant Simmer -- she has so very graciously agreed to let my little Chef Amanda come to be a guest Chef for the day!!! Date to follow.
Thank you Chef Bill at Ct Culinary Ins -- he has been so kind and generous to Amanda -- giving her a whole Chef outfit!! Thanks to Chef Bruno and the Big Guy the French Pastry Chef and the others. They all signed a cook book (it's actually the school's major textbook for students). Amanda's used it already!!
Thanks to Rev. Keirstead and our church family as always -- always there for us.
Thanks to the Barns. You made a special place for her.
Thank you Dr. Hagstrom -- our hero always even though we keep getting you in trouble!
Thank you Mary L for getting us into Disney and camp.
And to everyone!!
I've said it before & I'll say it a million times -- we wouldn't be where we are (mentally) without all of you. She & her sister are in a very good place.
Guess that's enough for now cause...
WE'RE GOING TO DISNEY!!!!
Wednesday, June 8, 2005 5:47 PM CDT
We're back in remission. The mylotarg seemed to do the job. Amanda was let out of the hospital fri and Sat played soccer.
She's been ok since then. she had another mylotage dose last fri (6/3) and played sioccer again next day -- she was ok but it was so hot.
6/2 we learned Boston won't take her for transplant. They haven't done the kind of transplant she needs. The kind she needs has been done w/ promise @ Children's Hosp Seattle. As in Washington as in state as in way the ...
Dr Hagstrom and the others hes consulted are in agreement that thats the best place for her. We're ok with it -- we have to be. Now we start the insurance nightmare all over again. Good news is this facility is a preferred hospital so its in-network. Now we just have to convince BC/BS to cover it. Then we need a donor. While this goes on, she get high dose ARA-C and be hospitalized around 1st week or so in July. then she wants her tubey out. It's ll have to come out anyway shince it had some time ago gotten infected. She wants it out for the summer so she can swin. we're going to try to make this heppen.
End of Aug -- if all goes well, that's when amanda & I leave. So many plans need to be in place not the least of which is the plan for 'How Judy Keeps Her Job through All This'. Don't have that plan yet. Hopeful we can work something out but w/ new management in placve -- anything can happen. No job, no insurance, no transplant (no pressure).
We are waiting to hear whether she can go on a 2nd wish trip. S couple hospital professionals along the way planted the thought in her head that there have been relapsed children that have been granted a 2nd wish but because she watied to take her initial make-a-wish trip she may not get her 2nd (too close to when 1st trip made..). We'll see. We are hoping to go back to Disnwy end of June.
It would be great to leave for Seattle w/ Emily & her dad for a few days ahead of check in time so we can be together before saying good-bye for what may be a very long time (2mos?3?more????). I don't look forward to saying good-bye to Em....
Hoping to wrangle some family members to somwhow make the trip (I have a brother Glenn in CO -- hoping to make an appeal; to him & his wofe to attemp to get out to vivist Amanda).
that's where we are today. tomorrow...???
Getting tense. Not sure I can cope w/out help. amanda's head still good. She's happy . Doesn't think too much about what if.. we don't go there.
Thanks for your interest. We'll have a going away party for her. You're all invited.
Judy
Thursday, May 19, 2005 9:08 PM CDT
Well, things are not great.
After this last BMA in Feb (after the last posting), that was clean too. That was great. Then Amanda had 11 teeth pulled & some other dental work done on Valentines Day and that went ok. Most were non-troublesome baby teeth we just needed to get out of the way. New teeth were coming -- needed to remove the potential of getting stuff trapped in these slow moving new ones. Three hours in the or. She needed a bit of meds for her mouth around her lips that just didn't like being stretched for 3 hours.
Amanda, Em & dad went to FL 2/21 for a week (during spr break) and had a good time. Low key.
March BMA 2 lasts. This real hard on mom since we were hopeful that Nov chemo cocktail kicked it out forever. I know. It was hopeful though not that realistic. Last chemo was in Jan & it took til Mar to rear its ugly head. We tried a chemo my mouth she started tues 4/12 she took at home. She went to school.
That was her birthday weekend. By fri (her slumber party night) she was tired but she was ok. I rented one of those hugh blow up jumpy bumpy things for the back yard. moon bounce. they loved it and they were tired by bed time (guess who was 1st to sleep..). Next morning -- Laser tag. My 2 brothers -- Amandas uncles came in fr NJ just for laser tag!! how great was that??
She had a great B-day weekend. Sat was the end of that oral chemo and she was wiped out by then -- day 5 (the end of it). 28 days later we were to start another 5 day oral chemo but 1st we had her into OR for another bma. This one revealed 28-35 lasts. not only did the oral stuff (Temodar) not work -- she was not longer in remission. Her 3rd relapse.
Learned that around wed 5/4 and thurs 5/5 she was in clinic for another chemo (sort of ) drug to try to jump start the whole remission processes. We needed to get her back to where she was in Jan. She recvd mylotarg. Known to attach itself to the cancer cells and destroy them. We were told she wouldn't expect lost days from school, extremly low blood counts and we shouldn't expect hosp stays (because of it) for fever.
She tried going to school the next day but I had to pick her up. Feeling to crummy. Fri was a home day too. Naucous. She toughed it out that following week but she felt crummy and she took zofran ea morning & night then after a couple days when that didn't seem to cut it she took zofran with dexamethasone which seemed to be what she needed. By that weekend though, she started belly pain . thoughed it out til Mon clinic apt.
Mon came and she was to get cbc and her usuall pentamadine when she -- @ clinic started a fever . Pretty high @ around 105. Her ANC was zero. She was admitted mon 5/16 then that night after receiving several mulit coverage anti-boitiotics because we didn't id the cause of infection yet, her heart rate began dropping. She rcvd several bolises and still it wasn't geting better. she was brought to the Ped Intensive Care Unit (the dreaded PICU).
They adminsterred dopamine over 24 hrs (or so) and it straightened her out. Tues evening she was back up at MS8 (8th fl). the crisis was over. That night though, she spiked anbother temp of 102 something but it didn't return. Wed morning she was let out for a few hrs to attend a school going away party she planned for ther math teacher leaving for an operation. She had a great time and came back to the hosp for the night and except for a slight rash (by late Tues, bacteria was id'ed -- some sort of eccoli (!!) strain and another -- I still am swirling) and a separate, specific antibiotic began tues night causing rash).
Anyway, its thurs night. I'm sure none of this made any sence (I don't have the energy to go into how PICU parents could stay w/ their child as long as they didn't fall asleep !! what the H ?, bedpans (!!) and the rest of the PICU nightmare -- another day. I'm w/ Em @ home - Rob w/ Am . I'll get back to CCMC 6am or so fri . She'll have another bma 7:30am. We'll know if she's in remmission after getting the mylotarg. If not, she gets re-admitted for more hard core chemo (probably ARA-C). She that's wehre we are. This a very blan, blachhh, bullet report. Sorry. Just knew I needed to get this out to you.
Thanks for following up on her.
Love, Judy (mom)
Monday, February 7, 2005 7:01 AM CST
Amanda is in remission. She completed 2 rounds of chemo -- the 1st after relapse started that friday after Thanksgiving and the 2nd was just after New Years.
New Year's morning we received a call from Dr. Hagstrom with the good news that the 1st round of chemo worked and she was in remission (!!!) with c.1 percent blasts -- something we all may have. Blasts can be good (immature white cells that will grow to do what they're supposed to do) or they can be bad, cancerous (cells that never mature). We were so relieved (words can't say..) and so very happy to spread the news. Dr. Hagstron was happy to deliver it -- you could hear it in his voice!!
The 1st round of chemo was a toxic mix of diffrent chemotherapies (some new, some not) and we weren't sure how she would tollerate it. She did good -- had the usuall fevers, nausea, vomiting, got a strep infection in her line, but after all the antibiotics, etc., she was able to recover but not without driving us crazy. She had an episode of dropping blood pressure that occurred over several hours one night. We almost headed to the intensive care unit. The PICU phyician seemed confident she looked too good to be transferred so we watched her closely that night. By morning, her blood pressure stablized and she was out of trouble. Felt like we dodged a bullet. Cancer Moms tell nightmarish stories about the PICU -- its bare bones medicine. They're great at what they do, its just not a warm fuzzy place.
Emotionally, Amanda is hanging in there. Loosing her hair again wasn't any easier -- can't imagine being in 7th grade without hair. That was tough. She doesn't break down alot but it was tough those couple days especially. Loosing her hair -- that's when it really hits. Can't tell you the feeling you get combing through your little girls's pretty, wavey hair as it pulls out with each brush stroke. I try to clump it up, out of her sight but after 3 or 4 days, its just about gone. She really feels the entrapments of cancer then. Standing in fron of the misrror looking at herself -- that's when it sinks in. Up til then, she was feeling pretty good. She's pretty much always felt good -- even when she was told the leukemia was back both times. I think that's probably the most difficult part for her -- feeling good while everyone around you tells you how sick you are. Then the chemo comes and that really stinks. It flattens her for several days with short periods of spunk in between. Still, she's been able to work through the crummy times and somehow she doesn't seem too scared or too brought down by all this. She lives each day as if this its all just another crappy set back.
She says she'll beat this and goes through it day by day as much as she can, trying to be like a regular kid who has limits. Even though she's lost her hair, finger nails, has gone through all those crummy side effects, and continues to endure all the medicine and hospital stays -- she somehow has adapted to it as a temporary handicap she knows she will overcome.
We kindov know the routine now. She knows she goes to the hospital every week, then its a 3-4 week period for chemo and recovery when she needs it. We have a groove now. When she has to be admitted for chemo, she's allowed to leave for a few hours ea day for the 1st days of the drug therapy. Then, once the chemo is complete, she's discharged home for the next 2 weeks to her own comfy bed instead of having to stay in the hosiptal (as long as her counts remain high enough). A big change from the past. The hospital is only 20 minutes away. She does much better (in her new sleigh bed set!!) at home with me taking close care. We go to the hospital at least 2 x's/week during each of those weeks at home for counts. She does a strong and steady decline during this time and by by the end, all her counts -- hematocrit, hemoglobins, platelets, white & red blood cells, polys , lymphocites, etc., drop to near fatal lows. She gets admitted again for another 10 day stretch. This is when children make a recovery or not. This is when she gets blood products -- red cells that carry oxegyn, white cell -- helps give her fighter cells and plateletes so she she doesn't bleed.... She gets other suppliments (potassium saline, etc)in large bags of fluid that hang from her 'pole'. Fever and infection come. Can't avoid it. She gets tired, feels sick, crummy but there's always a medicine to give her or not give her (we find medicines to avoid that give her certain unwanted side effects).
This is when the nurses really shine and her doctors hold her close. Its these times that we circle the wagons and we do whatever we need to as a team to keep her happy and comfortable. Once those last 10 days are up and her counts come back, we go home and she goes back to school!! Its every bit the roller coaster effect.
Everyone's getting pretty good at this. Emily chips in too by being home and being a good girl for gramdma. They're good company for each other. Drive each other crazy but I think without that, they'd be missing the normal rhythums that need to stay in place. Not easy for grandma especially -- with my dad gone, its hard I'm sure. She'll never show it. She she and all of us need to keep busy.
Thinking back to Christmas and the 1st round of chemo, she focused on making a ton of home made Christmas gifts. It was seven days of chemo that time and it thankfully went by pretty quickly but it was filled with almost the same high stress and anxiety as when she was 1st diagnised. Her nurses were great and all of her favorites are still there. Dr. Hagstrom is still our anchor. Things get better when we see his face.
She began getting blue over not being able to shop for everyone on her Christmas list. It drove her crazy!! She loves shopping, buying and wrapping all her well thought out gifts. Using her own money -- she loves to give. We made a couple day-trip escapes those 1st days just before X-mas. We slipped home for a few hours (she freaked out grandma who answered the back door!) and eventually, this lead to coaxing her Dr.s into letting her hit a couple stores (this was when her counts started their come back) & she got to do her shopping!! Got back to the hospital and over the next few days, she great time wrapping all her treasures. It made the time go by.
One Saturday, her nurse Jocelyn was watching how much fun Mand was having wrapping. We didn't have our full wrapping supplies at that point and we were thinking that we would make our own wrap out of plain brown or plain white paper -- hand stamping it with the couple stamps and ink pads she got as a gift. We & Joeclyn were thinking out loud about how we could build on this idea wishing for maybe a couple more stamps and ink colors when not more then 20 minutes later, here comes Jocelyn, through the door with a bag of beautiful, brand new, Christmas stamps (snowmen, snow flakes, etc) and all kinds of stamp colors!!! Amanda was so happy!! We thought she just phoned the Child Life dept and they went into their cabinets and ran the stuff up but nope -- after she phoned Child Life and found out they didn't have what Amanda was talking about, she called her husband who -- I swear, took no more than 20 minutes to find a craft store, purchase everything, then travel, park and get up to the 8th floor with her surprise bag of goodies!! How cool was that -- that Jocelyn would feel so much love for her -- that her husband not only agreed with this but sprung immediately into action!! How great?? Amanda really appreciated it!! It made her day! Her husband came in too to say hello (& catch his breath!). What a great couple though. Knowing Jocelyn, I bet that's not the 1st time she and her husband did something like this. So many times the Dr, nurses and other hosp staff have gone way above and beyond for her in so many ways.. Ct Childrens has a tremendous hem/onc staff. They're all heros everyday.
We didn't decorate her room like we usually do (we go a bit crazy..). This was because she had no intention of being there for Christmas -- we knew we'd be cutting it close though. There couldn't be any 'issues'. She planned to go to New Jersey for Christmas and she wasn't about to let anything get in the way. Both girls love Christmas at Grandmas. Uncle Glenn & Aunt Linda were coming home from Colorado so with EVERYONE home, she wasn't going to miss out.
About a week before Christmas, she was let out on another day pass and she and her sister put up the tree -- up & decorated in about an hour!! Christmas is a great motivater. THEN..just before discharge, she broke out in a wicked red rash. After freaking out, Amanda (not the doctors!!) figured out it was because of a new tee-shirt she got that hadn't been washed yet. The fire retardant in the material caused a rash on her tourso that started and ended at the tee-shirt area (ironic that the chemicals used to make the shirt flame retardant caused a rash that made her look burned!). We were scared the rash would keep her there but she made a convincing argument & they let her go confident it wasn't a drug or graft vs. host disease caused reaction. It got better. She went home for the next 3 weeks.
Two large Christmas donations were received from 2 very caring, generous families (one of which we've never met!!they only heard about Amanda!!). Thank you!! How cool is that, that individuals, sometimes strangers, have allowed Amanda into their hearts. I was able to get her & Em Christmas gifts I never would have been able to. The holidays were this almost perfect, magical time. Amanda got an electric (stand-up ) skooter that she loved! as well as a portable DVD player that she wished for during all those long car rides back & forth from Boston, among other things, and Em -- she is still jumping up & down over her iPod. Thank you to those families and to everyone who made her Christmas the best it could be!
The week after Christmas, Amanda returned to CCMC for a bone marrow aspiration to see if remission occurred. It had. We could exhale.
New Year's was spent with (all) the Forrest girls who came from Torrington to spend the night -- even Mom stayed!! We made tons of food -- did some fondueing. That was alot of fun. You'll remember her friend Chelsea another 12 yo who became her friend at CCMC. Chelsea's sister Pricilla and Em are the same age too so it dodn't take long to discover we had a real special 'fit'. We had alot of fun that night.
The second round went relatively well --home after 5 days of chemo. Her counts still good -- she stayed home, layed low. We went back & forth to the clinic. Toward the end of the 2nd week the expected fever came and she was readmitted as planned for the downturn. Just like the times before. This 2nd time she returned with mouth sores. I had to start morphene a few days before she was admitted. It was round this time that nausea, vomiting and some bleeding started. She was admitted w/ another strepp infection then her counts recoverred pretty quickly. Started feeling better. No real blood pressure issues this time, no rashes. She started thinking about school again.
Dr. Hagstrom reminds us this is miraculous -- she is a very lucky girl to be where she is medically. This week (Wed) she'll have another bone marrow aspiration done and we'll be able to make decisions about which direction we have to go. Another bone marrow transplant may or may not be in her future. A transplant like she went through 4/2002 would be too dangerous. Her body couldn't handle it. There's talk of a mini transplant that involves less pre-transplant conditioning (less chemo, less or no radiation this time) and wouldn't bring her down to the same dangerous lows just prior to transplant. Another direction may be to just knock this out with more chemo since she's (so far) responded so well. After this wednesday, we'll know if she is still in remission and to what degree (you can still have up to 5 percent blasts and still be considered in remission). We hope to see no more blasts than were present in her marow sample taken just before New Years. If they are still very low then we'll know the chemo is working and we may make a plan for a new chemo protocol. This is a big week.
My Mom has been invaluable during all this -- she stays with Em during our hospital times which is for Em. This is all taking its toll on Em. Freshman year has so far been a disaster and she is back to a frequent therapist regiment and we are trying to work with her school to get her through all this but we're finding her highschool counsler to be pretty heartless and uncaring!! Complaints to Bd of Ed to follow you can be sure. Our therapist Helen has gotten involved. I'm so thankful she's back on board. This all takes some much effort and energy and frankly, I need help. We hope to rescue the year for her and we'll see what this new semister brings.
Our Church family continues to be there for us and our Rev Keirstead has been our champion. The Amanda fund is still in existance and last year the out of pocket deductible and co-pays well exceeded $10k (that's not taking into consideration pharmacy charges or the rest of the expenses we've incurred!!!!). The establishment of this fund by Rev Keirstead has allowed us to keep sane and has provided a forum for those out there (and there are so many!!) who want to help. Donors have coverred those out of pocket charges and expenses. Support we need to survive. I don't know what we'd do. We are so thankful...
She went back to school this past Mon and I was able to get my butt back into the office ea day (except clinic days). It was good for all of us to get a somewhat normal schedule going again. Amanda's first week of school I feared would make her stressed and upset at not being caught up -- she's such a good student and we couldn't make school a priority during chemo -- her recovery was our focus. In usuall Amanda style -- I would pick up this happy invigorated girl ea day who seemed caught up!! She's still in the top track and has maintained her status in the Jr. Nat'l Honor Soc -- something she's very proud of.
One final story before signing off -- last Mon (her 1st day back) she learned about her school's Science Fair that was to take place that thurs. The other kids had 2 months to work on their experiments, write ups and exhibits but Amanda said she wanted to do it anyway (she got 2nd place previous year in Chemistry). She was excited to get started. So, she proceeded to get to work -- getting all stressed out those few days. She pulled together her exhibit and was able to get her entry and write up in on time. Bubbles. Her experiment involved bubbles.
That thurs evening there was an open house and the results of the day's judging was announced. Judges were non-North East Middle School personnel and included local officials and an ex-principal among others. The announcement came and guess what?? She won 2nd place in phyisics!! I can even spell phyiscs!! And was selected to go to the state finals!! She was so happy. I'm so proud. She wouldn't allow pictures.
For now, we're ok with the exception of a cold that's knocked her off her feet -- she's home today in bed. I'll keep a close watch. So while we're almost on a sort-of regular schedule (she did miss last fri due to clinic apts and now is home today -- and wednesday is a hospital day), we're still kind of tripping over ourselves but we're marching forward none the less.
Her father is planning on taking them back to Florida (I'll have to tell you about her Disney Make-A-Wish trip some other time -- it was great though..) over the upcoming mid-winter break so she and Em are excited about that. I'll post another update when we know the results of ber bone marrow asperation and spinal tap. Thank you all so much for your love and support. We couldn't do it without you.
Love, Judy
Friday, November 12, 2004 5:48 PM CST
It's back.
Our hearts are so heavy.
She knows this time will be very hard and remission may or may not be possible.
There are no words.
Please pray for her, her sister, her doctors, for remission, for a cure.
Saturday, November 6, 2004 6:50EST
UPDATE:
It's back.....
Wednesday, September 8, 2004 10:16 PM CDT
Oy.
I know.. sorry. Long period between updates -- we've lost readers but I can't assume that -- here's the poop..
Amanda is good (yeah!!!!) and is still going to Children's Boston, Dana Farber Cancer Institute and Ronald McDonald House every other week. She is progressing in a positive direction (!!!!!!!!!).
We are still surviving off the Good Will of others -- The Amanda Fund has supplied financial support for hospital and pharmacy charges that have WELL exceeded the $10k mark since its inseption Feb 2004 so -- THANK YOU soooo VERY much to the contributors and to Rev. Keirstead for setting this up through the church and for facilitating and spreading the word re our need. Amanda and Emily would be without a mother if this fund hadn't been created and fed. I would be homeless. Period.
More good stuff -- special thanks to our friends the Drexels for remembering Amanda and for recommending her as one of the benefifiaries for a golf tournament that took place Aug, 'The Ted Connelly Memorial Golf Tournament' and special, special thanks to the hosts for selecting her. I had the honor of talking with Mrs. Jana Gurzenda -- spending a few hours briefing her on Amanda & her disease(s) prior to the event. What a wonderful woman with a heart bigger than Texas! Amanda was one of 3 recepiatiants selected as tournament beneficiaries. Ted ws the coordinator's best friend & died of cancer when he was (I believe) in his 30's. An extremly tough loss and it shows. We attended the after-tournament-party at a YMCA Camp in Meridan. What a HUGE, organized event!!! I was so impressed at the commitment of EVERYBODY in attendance. They've been doing this for 10 years. What a great group of people. Another story of complete strangers -- out there doing great things just because they know about & feel the need. We saw our firends the Drexels as well as our friends the Boteons -- Bonnie & her hunsband -- their son, a prior receipiant beneficiary.
Another family, ex-neighbors of ours is (just got ph msg -- sorry Cathy -- I need to call you !!) doing a fund raiser as well.
Tough to be in this position -- Amanda's treatments will continue through next year (til March - April ??) so the deductibles (impossible to meet w/ this new insurance) will empty out & re-fill starting Jan!! Can't win!!
Camp.
Both went. Both -- EXCELLENT TIME!!!! Hole in the Wall. What a majical place. Amanda wasn't picked to be in the Gala this year but our buddy Nathan was!! GO Nate!! Em's experience this time (she left last year after a day & a half -- she had an excuse.....) was GREAT!!! She had the ULTIMATE camp experience!! Lots of hugs and lots of goofiness (walking into this was so not like her -- but she like the rest of the siblings, adapted and well, had the experience of a lifetime!!!). Amanda was a bit lower key -- but came back so happy and with lots of pictures she shared with hospital staff, friends and family.
Week before last we had a hospital admission -- Amanda (poor thing) started throwing up in the parking lot at camp while she & her dad were picking up Em (!!!). She remained in denial rest of the day til later that night -- fri about 7 or so. They went to emergancy room (CCMC) where her temp was at about 102 (just under) and admitted she was. She spent Fri-Sun there. She wanted to be out in time for start of school (which for us started 8/30) but because she was given 5 mg of a drug that should have been @ .5 mg (BIG DIFFRENCE!!!!!!!!!!!!), she sufferred the effects of an overdose & I had to pull her out of school for bed rest (& daily trips to CCMC for counts) and she missed Mon, Tues, went Wed then off to Boston thurs-fri (we switched from our usuall MON/Tues Boston visits to Thr/Fri that week so she wouldn't miss school AND SHE DID ANYWAY!!!..... ). Poor Mand.
School shopping done (still owe amanda a bit) and she and Em (Em in HIGHSCHOOL -- yes HIGHSCHOOL!!!) are off and running. Soccer for Mand (!!), music lessons for both, student counsel and Nat'l Art Honor Soc for Em (she's focused on getting scholarhip $$ for college -- GO EM!!!) and lots of church activities (this is Em's confirmation year) will keep us VERY busy.
Thank you everyone. No words can describe the love for life Amanda and Em have learned through you. Thank you for being our friends and family. We're not easy. Truly, thanks for sticking by us. She has a way to go......
Love,
Amanda, Emily & Mom
Saturday, June 26, 2004 8:45 PM CDT
Hi everybody.
It's Sat night and I just brought the girls back home from Grandla's in NJ. It summer. They went to Grandma's for thier 1st week out of school. we have a new baby boy -- my youngest brother David and his wife Lilian just gave birth to Bryce Raymond Cope 2 weeks ago. Got to see him for a few minutes today -- just sleeps. beautiful baby -- so little...
Amanda's good. She finished up her spring soccer season (The Hurricanes) 2-4-1 (I think). She was glad to finally get to play. Still a bit rickety. She did her best. It was just GREAT to see her out there! We would bump in to the Colegroves sometimes at the fields which was nice (another '2J' dear friends of ours). Great for Em & I to watch her and cheer for her (Em's such a critic!!).
Treatments are every other week. We are still trying to get a system in place. Now the latest strategy is to have a substance 'TPA' placed in her line night before treatment day to help keep the line clear. A visiting nurse will go to her dad's to place it in her line. This week, we were bumped to Wed/Thurs (from our usuall Mon/Tue)and Boston wants a CBC befiore we get there because blood products are still sometimes needed to get her counts at the rignt levels to start. Still trying to get it down to a process.
Amanda is in good spirits. She's almost weaned off the prednisone that she's been on since Sept (or even prior -- I'm not sure..). She's so beautiful and it was so hard for her every day to have to go to school all puffy like she did. She's so strong. She was in a great school that really, really supported her and truly lifted her up ea day.
She was student of the nmonth, had art work picked for the city art show, she got the Unified Arts student award and went to the Capitol (CT State Cap) where she received an award in writing from the (then) Lt. Gov. Jodi Rehl. We have a picture of her & Amanda -- pretty cool that it's Amanda and the Now Governor!! Amanda recently won 2nd place in her school's science fair -- in chemistry. She conduct the necesary experiments and set up a great display that demonstrated the rate of capillary action in certain flowers (comparaing rates in ea).
All in all a very tough school year but she got throught it.
Having to stop here for now -- will add more to this long-over-due update later... (Em update coming...)
Tuesday, April 13, 2004 11:40 AM CDT
At the exact moment of this writing (12:48pm), Amanda's in the air!!! Finally -- taking her trip to FLORIDA!!!! She is, right now, the happiest kid on the planet!! She'll arrive around 3pm or so in Tampa then spend next week (4/13-20) in Sarasota!! She's doing great.
Wanted to make special note of thanks to the Bristol Theater Arts Group who is presenting a Variety Show Fri April 16 & Sat April 17 (AMANDA"S BIRTHDAY!!) entitled:
One Voice
A Variety Show of Song and Dance
It's at 7:30 both nights. Tickets are $15 and they have graciously dedidated their talents and ticket sales to The Amanda Osterby Fund!! How great is that?? Also, Trivet Financial for Lutherans, Hartford County Chapter # 31002 will match up to $2500 of the monies raised!!
Thank you all so very much!!
Amanda's trip is largely the result of her Dad and his family and The Fund has sent her off with some pre-trip shopping and her spending money!!
She is on top of the world (literally !!!).
Thank you all.
The Amanda Osterby Fund has been established at First Congregational Church United Church of Christ, Bristol. If you would like to contribute, please make your checks payable to First Congregational Church and note "The Amanda Osterby Fund" and mail to the church at:
31 Maple Street
Bristol, CT 06010-5096
Tuesday, March 16, 2004 4:21 PM CST
Amanda's treatments now are every other week!! It was so nice last Sun, just to come home from church and relax a bit. Getting housework done, Amanda got to play with her friends, all things that there is not time for.
Amanda was named Student of the Month!!! at Northeast Middle School!!! She was so surprised. She said to me that this was her goal for the remaining school year -- to be selected. When she told me this I had already gotten the call. Keeping the secret was tough. She learned about it at the same time the rest of her schoolmates did. It was a March 3rd (I think). I snuck into her school that morning to be there for the announcement. She was so surprised and so, so happy!!! After her class was filing out, she couldn't resist running up to me -- she jumped up into my arms and we enjoyed a gigantic body hug!!! It was great. Tha morning too, was announced that her essay on Connecticut Female Heros was one of 2 essay selected!!! She will go to the state capitol 3/23 for a special reception and maybe, just maybe hers will be the one selected from the other school's 6th graders picked to receive a special savings bond. Lt Governor Jody Rehl (sp) is sponsering this.
So proud of her!!!
Her school is going great and her treatments too. Each week she continues to show improvement. Her doctors and nurses are so impressed with her.
I just gave a telephone interview to Bristol Press. Look for the article in tomorrow's newspaper.
Fundraising continues -- this week, one of our church members -- Bristol CentralHigh School senior Meghan Curtis and A.J. Welsch have organized a music marathon!! Several of her schools performing groups (choir, jazz band, dancers -- you name it!!) will be at :
Fisrt Congregational Church
31 Maple St
Bristol
from 2-6pm sun March 21 to raise funds for Amanda's out of pocket expenses, co pays and deductibles. How great is that, that Meghan orgainzed this!! Thank you so much Meghan! Thank you performers!! We can't attend the end (off again to Boston) but we'll be there for the start!! Can't wait!!
Well, guess that's it for now. I'm still in the office in Windsor -- snow is pouring down on us. Had to type this twice (lost the 1st saved verson ugh!!! ).
Take care. Thank you for checking in. Hope to see you at the marathon!!
Love,
Judy
The Amanda Osterby Fund has been established at First Congregational Church United Church of Christ, Bristol. If you would like to contribute, please make your checks payable to First Congregational Church and note "The Amanda Osterby Fund" and mail to the church at:
31 Maple Street
Bristol, CT 06010-5096
Tuesday, February 24, 2004 7:55 PM CST
3/4 Check out our favorite Amanda & Dr Nate photo!!!
Hello.
Everything is ok here in Amandaland. Amanda's treatments are going fine and have been uneventful and she continues to show improvement. We are still heading up to Boston ea Sun afternoon returning Tues afternoon and we are still in the thick of very long days there. We cram alot in to those days and we really feel it once we're home. No complaints though -- we know this is our job and Amanda is still in very good spirits. She feels fine -- tired a bit after treatments but the occassional red blood cell transfusions help and help her tollerate the treatment better too. She's great.
Thank you again to the donors to 'The Fund' and all those out there working hard at the fund raising events. Our 1st Congregational Church family is working very hard and Amanda's & Em's NE Middle School teachers have worked hard at fund raising as well. Thank you for making these days easier and happier for us all. Em started guitar lessons that shes loving very much and they both have an art lesson ea Sat morning they are loving as well -- all courtesy of the 'fund' and from a special, private donor & her husband. Thank you for including Emily in your thoughts and prayers - shes asking for help these days and I'm trying to pay special attention to her and her needs. She's missing her mom and I'm missing her too. Quality time is at premium these days but with help, we'll keep her on a good track.
Not too much else to report except that I don't know what I'd do witout the help from so many of you . When I feel weak -- there's all those prayers and good thoughs out there and your acts of kindness are too much. Special thanks also to Bruno & Nicole Goebeil who have stepped in to help with the girl's rides to and from school. Lets me take off early for work (travel about an hour ea way) and return in time to get dinner on the table. Just being able to work a full day takes alot of orchestrating. It's these kind of important things that take place every day that are little to some, big to us. My job has allowed me to take a lap top to Boston and the nurses in the pherisis dept give me my own little space to hook up so I'm able to get some work done while Amanda is in treatment. I have a phone to use too so with my emails, phone messaging and ability to get in to our computer at work , I can get the important things accomplished while we're away which helps chip away at getting a full week in. That and some long hours rest of the week getting me re-connected with my work and there too are people that have gone out of their way to work with us.
Amanda is looking forward to a trip to Florida her Dad's sister is keeping her promise on. When Amanda was very very sick , her aunt Deb promised this trip if she got well & well -- she's well! Well enough to go. NO sun, no swimming just time with her FL grandmother ('Nonnie'), Pappa JIm (step-grandfather) and her cousins Mikey, Joey and (not so) Little Peter & Aunt Joanne & Uncle Peter are all sure to show her a great time. Michael & Robin Hannon (nonnie's nephew & wife) will participate too I'm sure. Thats in April - she'll be gone for her birthday (4/13-4/20 - something like that). It'll be so good for her!
We're doin' it! Not without alot of help! THANK YOU! and Thank you for keeping Amanda & Em in your hearts.
Love, Judy
The Amanda Osterby Fund has been established at First Congregational Church United Church of Christ, Bristol. If you would like to contribute, please make your checks payable to First Congregational Church and note "The Amanda Osterby Fund" and mail to the church at:
31 Maple Street
Bristol, CT 06010-5096
Saturday, February 7, 2004 8:36 PM CST
Good news and more good news. Insurance finally responded after agreeing to allow Amanda's Dana Farber oncologist Ian Thornley talk to an insurance co doctor and her treatments have been approved for one month. They will watch her progress and authorize add'l treatments as long as she can demonstrate improvement. I'm confident her treatments will continue for the duration -- just getting to this point was so frustrating...
Now for the other good news which is that although coverage was approved only at 70our church 1st Congregational Church of Bristol has rallied around her creating 'The Amanda Osterby Fund' and conrtibutions have already been made. Our fears and wonder over how we were going to live on very little remaining income have been put at ease by our wonderful church family and other contributors to 'The Fund'. Many of our friends and family have asked us about such a fund and I have information on it at the end of this writing. Thanks so much to Rev. Keirstead for your drive and commitment to her and to Em. His and so many others work and love for both my daughters really lifts us and puts us in a good place. There are several fund raising opportunities in place for her including her school Northeast Middle School and I'll list the ones I know about in upcoming updates. I am late with this update but today and tomorrow (Sun 2/8) Pligrim Furnature Southington, has included Amanda in their 1st Annual Winterfest that is raising funds for several local groups. 1st Congregational has a bake sale set up and today there was unbeliebvable amounts of goodies. We went there to check it out and ride the carousel (what an incredible place!!!) and to say thanks to the volunteers who are spending so much of ther time for her. Should be great tommorrow too. Another event will take place there just for her later this April. Its just been unbelievable the amount of participation and love that has come our way. We are very happy that we will be able to do things like get the computer and cable turned back on and getting all those large lingering medical bills cleared up. One of Amanda's teachers has provided her with art lessons!! and Emily will be able to attend now too! We met their art teacher who shares a love of Tim Burton creations with Emily and Emily was hooked! Some of the funds were used to purchase the art supplies they will need and its something they can do together. Em's guitar lessons come courtoesy of the fund as well.
Amanda went back to Boston last Monday and they were very happy to see her. She received a red blood cell transfusion the fri before and her hct of 47 thrilled her pherisis group. She tollerated Mon's treatment very well (slept) but we learned the principal nurse technicisn (the only one with full knowledge of the machine and the intricasies built in for Amanda) would be out and not availabe for the following days' treatment. Jury duty. I, just moments before learning this, felt compelled to pull the Ch Hosp Bost nurse coodinator out into the hall saying I would be EXTREMELT uncomfortable if that one and only technician wasn't there (meaning the other nurses still 'in training' hadn't demonstrated AT ALL enough knowledge to run it without him) and sure enough -- at that moment she told me about his planned absence for the next day. We returned to the Ronald McDonald House that afternoon and I got on the phone with Dr Thornley who listened and called me back after he called around to the Brigham's staff and was in agreement with me that we would go home to CT and return for treatment next week. While I was happy they listened to my fears and concerns that the nurse most trained to take over, I was VERY, VERY UNCOMFORTABLE with and that they agreed with me not to have her do the treatment, I was also pretty disgruntled that she only received one of 2 treatments because no one had the forsight to think this out & have us come perhaps Wed/thurs or thurs/fri. We went up there, arms loaded with superbowl party food (we put on a great spread). It was alot of work -- don't get me wrong -- we love doing those things but it was a lot of sweat, packing and lifting only for us to be ther one day & get sent home again. We could have shared superbowl with our family and friends -- I don't know. AND -- what if that nurse technician GETS PICKED FOR THE JURY??? then what do we do?? Just a little troubling that so much rides on one person. Even though Amanda is in good hands, there's often not too much thought given to things like this. Anyway -- this is another week and we expect the usuall Mon/Tues pherisis home Tues afternoon. Thats what we expect -- we'll she what happens --its always something!! Keeps us on our toes.
I'll probably add to this later -- knew I needed to get the latest out. Good news and more good news. We are happy.
Thank you so much to everyone for taking Em & Amanda into your hearts. It's a relief. Lets us focus on getting everyone well and back into the rhythum of life.
The Amanda Osterby Fund has been established at Fist Congregational Church United Church of Christ, Bristol. If you would like to contribute, please make your checks payable to First Congregational Church and note "The Amanda Osterby Fund" and mail to the church at:
31 Maple Street
Bristol, CT 06010-5096
Wednesday, January 28, 2004 8:17 PM CST
Insurance has approved Amanda's treatment for one month. They will go month to month (aproval wise ) so this is a tremendous sign of relief for many, many of us.
Exhale...
Can't tell you how much energy this has sucked out of 10's of us...
More good news is my church -- First Congregational Church Bristol (FCCB) has taken on Amanda's case with a vengence. In next week's (Sun 2/1's) message, Rev Keirsted's announcements will no doubt include the news that insurance will cover. His rally to the troops last week included our plight that coverage, if coverred at all, (we received an initial denial based on pherisis still being considerred experimental) would be @ 70%. My church community stepped forward and will help us by setting up a fund -- administerred by the church that I believe will be called 'The Amanda Osterby Fund' for out of pocket expenses that we anticipate may approach $10,000. So greatful for Rev. Keirstead and his salesmanship! I dismissed my 8th grade Sundayschoolers, went down into the swarm of Sun Sch students, parents, etc and was hugged maybe 15 times walking a 15 yd distance -- unsure why. I found that Rev Earl's message last sun included Amanda and how we (at that point) didn't know if any coverage would be in place. Amanda & Emily's Nursery school -- Century Nursery School whose teachers & board members are required to be members of the church (since its housed on the church grounds and supported by FCCB) immediatley responded with a generous donation which in combination with 2 other of my work related dear family friends will open the 'Fund'.
So, Good news and more good news. And more good news still is that Amanda is good. She has enjoyed full-time back to school this last month in fact, we had no tutor -- just school . Almost a BREAK for her... Amanda even got a b-day/slumber party invite -- this was great too. She had a good time.
Emily sufferred pnemonia last week and had to go back for a 3rd check up this week but she'll be ok on a continured antibiotic. She and Amanda must be feeling so jumbled about especially with their dad still layed up with his broken hip. He can drive and walk a little but the girls have , for the most part, been here with me.
I've (last week and this) tried returning to the office full time with a few bumps but so how my employeer is still emplying me -- & continues to be so tollerant and understanding regarding the insurance changeover and the issues we are facing . I am so , so fortunate.
We're back to Boston (!!!) this Sun -- makes me think that if superBowl Sun is going to tak eplace at The Ronald McDonald House this year -- they better get ready for our wings, sloppy joes. nachoes Osterby Style because I won't be without! Should be interesting...
Sorry this is so sloppy & un-thought-out. -- I know I had to get the latested posted.
We're very relieved and very happy to get on with Amanda's treatments. Thank you everyone.
We are so very blessed...
Love,
Judy for Amanda & Em
Thurs. Jan 8
My new health care insurance provider (eff 1/1/04) has denied further treatments for Amanda. Apherisis is considered too experimantal. Guess they feel one little life isn't worth saving. Please pray for her as we search for a means to make her well.
Sunday, December 28, 2003 11:20AM EST
Hope everyone had a good Christmas. I know we did. So many of you out there contributed to the girl's Christmas sharing a very special holiday that I thought would be impossible. Conn Childrens and some of their contributors gave the girls -- Pappasan Chair for Amanda (!!) and an entertainment center for Em! The Wallingford Jr Women's Club sent a bunch of wrapped gifts as well as gift cards through CCMC!! Our friends the Aldens and their family walked me to my car last Sun after church carrying bags of gifts!! Soooo generous! and thoughtful! The Cinnotti's as well provided for my cookie ingredients and stocking stuffers! Thank you! My workplace friends sent a collection to us and my friends Marilyn and Cathi are caring and generous beyond words!! So many people and groups out there for us this and every year! My First Congregational Church, Bristol had Rev. Kierstead over with a beautiful gold (stand up) wire Christmas tree (3ft or so) that was filled with clipped on gift certificates!!! From everywhere! Thank you Rev Keirstead for tracking me down! He had to WORK AT finding me then getting this wonderful gift to me prior to my NJ departure Christmas eve! Thank you all for your outpouring of generousity and support :0) !!Just...WOW!! xoxoxoxoxoxo!
Amanda was enjoying handing out her gifts she spent weeks shopping for. She very thoughtfully and generously spent some of her savings on a couple special gifts for her family & close friends. She loved being Santa at Boston Children's and Dana Farber last week. We like to remember our CCMC & Mass Dr.s & nurses. They don't get enough 'thanks' or praise. We are blessed with a brilliant, tallented group of care givers. From the nurses assistants and front desk staffs, to our social workers Mary Laliberte (CCMC) & Joe Shablt (DFCI) to our muched loved nurses (now includes our pherisis friends!! Hi Eileen, Terry, Matt, et al! & congratulations to Tania & Jeannie on your upcoming babies!! its rainin babies @ CCMC!!) and especially our doctors -- Dr. Hagstrom :0) & Dr. Thornley. Dr Hagstrom is still a workaholic and is still running ragged (CCMC needs another oncologist/hematolisist!!! they still haven't replaced Dr Bergstrom!) We are able to attend each hospital visit as if we were seeing family. So much special care and attention is placed on our Amanda. She has found a way into so many hearts. Her teachers as well. They all have a very high level of love and devotion for her. Her tutor especially -- Rayette Byrnes has a special place in our hearts. Amanda loves her so much.
We spread a bit of holiday cheer at the Ronald McDonald House -- sharing a dinner of stuffed shells we made with some of our Ronald McDonald House friends. It was good cooking and talking in the kitchen as we made dinner. Made a wicked good antipasta too (if I do say so...).
Christmas was at Amanda & Em's NJ grandmother. It was great as usuall (still missing my Dad..) and we all ate too much. Mom works so hard. Amanda, later Christmas night, came down with a cough and headache. I gave her a tylenol then she also complained of a sore throught(!!!). Next morning she got sick twice and started a fever. I threw her & I in the car and headed for CCMC. It was friday and luckily the clinic was open. By the time we arrived, Amanda, on her own, was able to bring down her fever w/ out any tylenol. My car heater doesn't work so that may have contributed. Bunch of blood work & throat cultures were done and our anticipated hostital stayover didn't happen. Luckily we were sent home. Amanda enjoyed sleeping (at least one night) in her own bed! She got to see her new chair that she curled up in and watched a couple Shirley Temple movies in then went to bed early. I did too.
Em got left behind in our cloud of dust as we screached off to the hosp that day. She's gone shopping a couple times since then with my sister-in-law Lillian who by the way is pregnant w/ their 2nd child. Can't wait! Brianna was so cute at Christmas. She's 2 and speaking quit a bit -- even yelling "QUIET!" when things got too roudy. Em's Christmas day was complete when she opened up her new black converse sneakers. She enjoyed the many benefits and gifts our friends and neighbors brought. She'll remain at grandma's til wed or so.
Her's and Amanda's father suffered a bad break last Sat before Chritmas falling on ice at his sister's (Aunt Bea's). He & the girls were there celebrating their Newington Christmas when this happened. He was taken to UConn Medical by ambulance and is home now with his sister's who are sharing his care. He was operated on last Mon and has plates and screws implanted to repair what sounds like a shatterred hip. He's in lots of pain right now still. Amanda stayed with him at Aunt Bea's last night. She gets to be the nurse now.
Last week's treatment went well though not with out a hitch. She didn't need any blood when we checked her levels & Mon went off without any issues. Tues though - went ok at first but as soon as she was hooked up to the machine -- nothing. She was fine minutes before -- they fluched and drew blood for more bloodwork but as soon as we tried to start -- nothing. One line blocked the other not fully functional (?!?!?). Some TPA was injected into both lines and we went to her Dana Farber apt instead. She went back to try again later that morning and everyting was fine. Go figure.
Getting ready to leave again - its Sunday and we'll leave for Boston in a couple hours. Looking back on everything that happened this last week -- would make most go nutty but for us -- such a mixture of goodness out there... really pulls us through. Thank you everybody.
I can't thank you all enough for the support we've received especially since Amanda's last few months have been so tough for her. You are great. You're kindness is making am impact on my little girl, on her sister and on me. You are all in my heart as I know my girls & I are in yours. We had a great holiday season. Thanks everybody.
God bless you and keep you and give you peace.
Love,
Judy for Amanda & Em
Wednesday, December 17, 2003 3:26 PM CST
Hello and Merry Christmas!
Since the 12/7 entry, Amanda has had 2 more weeks of treatment. We left 12/7 for Boston and took Em with us. This meant missing school for a couple days but I think she needed it. I needed it. I miss her and Amanda and her sister missed each other too. It was good for Emily to see what we have to go through each week and more importanaly, the three of us got to be together for a few days.
That 12/8-9 round of treatment was uneventful except that on Monday morning when we (the pherisis nurses) tried to access her line .... (you guessed it) nothing. Again nothing was moving -- the only one that was clam and collected in the room was Amanda. In fact, after the nurse tried to flush the line unsuccessfully, it was Amanda who 1st suggested "How about a cap change?" thinking there may have been a clot in the cap. They said "OK Mand" and changed the caps. Nothing. Next she suggested trying again to flush both lines with saline. Again nothing. She said "Let me try". They let her and she took a new saline flush and wiggled and jiggled her little body as she tried the flush and low & behold -- got the line working fine! She tried it on the other lumen & same thing -- got it working! She's unbelievable. I told her I'd help her negotiate her salary with Brigham & Women's -- $50k minimum, full benefits and a company car to start. They are impressed with her.
We took Em to Coply Sq Mall later that night by taxi -- showing her Dick's Last Resort where we ate. They had a good time.
Rest of that 12/8-9 treatment went ok with the exception of needing additional meds and treatments after our long day.
got a call during pherisis from Dr Thornley who said she needed an IV infusion of magnesium. Over to Dana Farber we went. We got home very late and she still needed more follow up at Conn Children's to check blood and medicine levels.
This last week's treatment was long and its getting complicated re getting her and the various staffs set up and ready for her. She needs transfusions now -- just to ensure what happened this Mon won't happen again. I had to ask them to stop treatment after 2 of 3 rounds after what was (to me) too much. She will now receive a CBC and red blood cells prior to treatment to avoid what occurred --heart rate went way up as well as pulse & blood pressure. Her color left her and she was suddenly very hot and felt like vomiting. They had to tilt the bed so her head was lower than her feet while we watched the monitors for further changes. Those few moments were rather frightning and we were at the point where we had to decide to continue or stop for the day. I huddled up with the group dicsussing risks etc and said she had enough for that day. They were able to collect enough white cells to still call it a good collection but fear of stroke, though very minimal, hangs in the air when those levels are so imbalanced. She received a transfusion that day and she was fine.
One of her teachers (her team leader) Mrs. Venturi popped in just after she recovered from feeling awful and helped perk her up. She's so good to Amanda and says she is very impressed at how easily Amanda catches on to things. Mrs. Venturi is her science teacher. Amanda is in great hands.
Tues went smoothly -- in fact she finished in about 2 1/2 hours -- a record! This is where we should be ea time but don't you know -- we expected to have her weekly oncolocy visit at Dana Farber Jimmy Fund clinic but didn't expect to get a call that she needed to receive more IV (long infusion) meds and we didn't get out of there til very late again.
Blood transfusions will most likely be the norm and visits to CCMC may be as well. We're trying to work out a plan to cut back on her in-hospital days so she (& I!) can regain some sort of life!! I don't want her great spirits and stellar attitude to burn out!
We'll go in this Sunday straight to Children's Boston to the blood bank where one of her familiar pherisis nurses Beverly will be there to (a day ahead of time) draw blood for a CBC so that going in MOn morning, we'll know and have ready if needed, any blood products. This will cut down on the waiting and on our total time there. Hoping for an uneventful week this coming week. Our goal is to leave around noon Sun returning home in CT by 3pm or so Tues.
Her NJ grandmother will arrive in CT Mon so that she's ready to take both girls back with her Tues afternoon (long travel day for Miss Amanda) to start their NJ Christmas. Last few visits to NJ were only these whirlwind one-day-there-next-day-leave visits. This way they can enjoy Grandma's house which they so love esp at Christmas. Always much hub bub at this time. Losts of people in and out and my Mom (Grandma) does a great job brightening up the place with oodles of bright traditional decorations. Thanks Mom and thanks Auntie Lillian for helping her decorate the tree.
That's about it. Amanda's still doing good. She says she's started feeling some positive effects of the treatment (feels like she can stand up straighter, can reach the top of her head eith both hands -- something she couldn't do and she can dress herself!). Today she was able to put on her shoes! Doesn't sound like alot but this is a tremendous boost for her. Socks are the hardest -- she can just about do that too!
Final note -- report cards in and Em did great!! So proud of her. She's still in that top track and received mostly A's and B's!!! Beautiful AND smart!!! Amanda got one B rest A's!! (Joking) Asked her "What's with the B?" (as if it was a poor grade...). My girls. My loves.
Still hoping to get a rhythum going. Getting better.
Have a wonderful holiday and thank you all for you're love and gifts of heart felt support.
Love to all!
Judy
Sunday, December 7, 2003 8:51 AM CST
Since Amanda's last journal entry, so much has happened.
She made it home for Thanksgiving. Got home around 1pm after a very long week in Boston. She and her sister enjoyed a Newington Thanksgiving with her dad & his family. On Sunday 11/30, we made the trek back to Ronald McDonald House (RMH) in Brookline and did the usuall -- check in, grab the key, throw down our things and go off to Sunset Grill for dinner. We arrived next day (Mon) at 8am in the pherisis unit to the usuall gang of residents, doctors and nurses from Dana Farber, Childrens Boston & Brigham & Womens. She got settled in, picked a movie, Mom signed more consent forms and we were ready. The machine was primed and the technician gave the all clear. Amanda's new central line needed to be flushed and.... IT WAS BLOCKED!!!! THIS WAS THE NEW ONE AND IT DIDN'T WORK!!!! The room paniced and again we tried everything to get it working. We got only about a teaspoon of blood out -- enough for complete blood count (CBC) but that was it. We tried flushing it with a stronger then heparin flush - TPA. It was forced in -- to sit for an hour. The hour passed and only slight movement was seen drawing from only one lumen. More TPA was pushed in and we were sent back to RMH to return in a couple hours. We had lunch & tried to relax a bit. We went back and the one somewhat functioning lumen was now better but only at about 70% clear. They decided to go for it but (it was now about 3pm) she needed a red blood cell transfusion (that count needed to be at 30 she was 28) and they said it was too late in the day and we should return the next day for a Tues/Wed treatment...... and Amanda and I just about lost it!! She was there, the hospital staff there and everything was in place and they were sending us home with a line that could be failing by the minute. I was upset -- they knew she needed blood that morning! Why was everyone sudenly ready to march out of there? We traveled and spent quite a few days trying to get this off the ground and at this pooint I flet like they were messing with Amanda's head. They huddled up and they all stayed. She got her blood around 4:30 and we started phreisis around 6pm that night. It went ok -- they worked out a few kinks and after a couple hariy scarey moments of elevated blood pressure (she had to fill a bucket of her blood w/ none going back to her til 45 min or so after the collection was complete and the white cells spinned out or were sepatared). White cells were kept then rest got returned to her. She did this 3 x's then when enough of the white cells that were spun again to cull out that portion of the white T cells (they call this the buffy coat)that were wreaking havok in her were collected, those cells were placed (at the very end of the whoole process -- around 11pm) those cells were the ones placed in a special tray & treated with light. Afterward, those treated cells were returned and treatment was complete. By then end it was almost 12 midnight and the technician looked down and saw they had overdosed her with heparin -- she received 10,000 units and she could only tolerate about half that!!
She was sent off to Childrens Boston Emergency room to be admitted and sent back up to the bone marrow wing (6 West). Can you believe it??
It only gets worse..
I sat up with her til about 3am -- she got to her room around 2am. She was ok except that she did start bleeding from her nose as soon as she got to the ER which was the fear with heparain -- it thins your blood. The bleeding stopped but she did need to be admitted. Wed morning came and the pherisis people came to her room to check on her and to see if the lines (they put mor TPA overnight) to see how the lines were. They were worse then the day before -- one totally blocked and one now less than 70% functional. They wouldn't do the next treatment until the line was fully functional. They explained that becase the heparin was being returned to her body during the process at a normal rate and the flow out of her own blood was not , the overdose occurred. To avoid this happeing again, her line had to be totally clear.
She was taken to radiology for an exam of her lines both the pik line in her arm and the CVL -- to see if for some reason the pik line was interfering with the CVL or what the deal was. What they found was the line (CVL) had moved and was now up against a wall causing inability to draw back while allowing fluids to flush through. There were about 5 doctors there viewing these live pictures on a TV including the surgeon Dr Lilliheim. Afterward, we (surgeon me and Dr Thornley -- her oncologist) sat her down to discuss what we thought would correct this which was to pull the line out and away from the wall. This they explained would be done right then, right in radiology and with no pain meds. She was terrified. She agreed but didn't want to and was very , very frightened. They said is shouldn't hurt her much. They told her she could tell them to stop and they would if it hurt too much. They began and immediately she was in extreme pain! It was awful. They had to remove the stitches that held it in place and any movement even during stitch removal caused severe pain. They hadn't even gotten to the pulling out part and she was suffering intensely. At this point Lillihem began pulling the line and it was beyond awful (there are no words). He asked her if she wanted him to stop and this little girl through her pain & suffering shook her head 'no'. Talk about bravery... They finished and after the pain of even the cleaning and replacing the tacaderm, they left and we took a moment just to fininsh crying and holding each other and it was over. The lines flushed fine and she returned to her room.
Wednesday morning pherisis and Dr Lillihem revisited her to check on her and -- you guessed it, IT DIDN'T WORK!!!! Amanda & I just looked at each other -- no words, no emotion. We knew what this meant... ANOTHER LINE HAD TO BE PLACED!!! She was given an 8am O.R. time for next morning (Thurs).
She was given the 'day off' and we got a day pass (for 4 hours) and we planned our escape. She needed to get out and have some fun. We were planning to take a taxi to Copely Sq., Prudential Center Mall when in popped my new best friend -- our Dana Farber Soc Worker Joe. He saw her name on the inpatient board and was surpried. I told him what Amanda had been going through and he said "Wait! Don't go anywhere. I'll be right back!" He returned about 15 min later with $60 worth of taxi vouchers (!!!) and 2 Visa gift cards for her ea worth $50!!! She was thrilled. We were off. We had a great time.
After shopping, we had dinner at Dick's Last Resort -- known for their (believe it or not) their rudeness! Good thing I learned about this ahead of time!! We were curious... They were great to us but as Amanda was sipping her chocolate milk, our waiter slipped on a huge paper hat on which he wrote 'Milk Makes me Fart'. I told her what it said AND SHE LEFT IT ON!! She likes a good joke better than anyone. We returned to the hosp around 7pmm -- her with her stupid hat still on her head as I wheeled her down the hall to her room! Such a knuckle head!!
Thurs morning 6:45am we went to the O.R. where we met up with Dr Lilliheim who just looked at her with these sad, smiling eyes. A very nice, compassionate man. He promised to do his best. He would try to place one in her chest but he couldn't promise that's where it would end up( I feared it would be in her neck...). By 10am he was done and he came to get me saying he was able to place it in her chest and he went deeper into her heart (instead of just threading it into her artery) and this should do it but he reminded us the others looked good at the time ... He hoped for the best. She remained real doped up all day -- she wasn't able to shake off the effects of the pains meds til later that night and she wanted to go home. Pherisis came and we were pretty terrified at this point. It was later thurs night and they just wanted to be sure -- it was fine. She was kept for another night and a new concern was her continued high blood pressure readings. They decided she needed to be medicated. Another reason to watch her overnight.
Next morning 12/5 and she was feeling fine and was asking everyone and anyone entering her room when she could go home. We left around 1pm but only after the line was tested one last time. It was fine.
So, its Sunday and we're getting ready to leave again. It's done snowing here but we're warned Boston weather is still bad. We'll take our time gettng there.
Amanda's spirits are still good but too much more of this & we'll both loose it.
Lets hope this 5th CVL is a keeper. Lets hope Amanda has a non-eventful treatment...
Thanks to everyone for hanging in there for her.
Love,
Mom for Amanda
Tuesday, November 25, 2003 3:16 PM CST
Hello everyone!Amanda here.Just sitting here in my Boston Children's Hospital room being bored and getting ready for tomorrows surgery.For those of you who don't know, tomorrow I'm getting my line in my leg out and another one in my chest because the line in my leg clotted and nothing goes in and nothing comes out. My Dad,my Mom,and me are really MAD and sad because now I have to get another hole in my chest.I havn't had the chance to talk to my Dad since we heard this news, but I know he's probably ready to burst because he and my Mom (especially my dad) didn't love the doctor who put the leg line in in the first place.Hopefully I'll be home to spend Thanksgiving at my Aunt B's house with my Dad,Nonnie,Aunt B,Papa Jim,Uncle Steve,my sister,and some of my cousins and their girlfrinds.I can't wait to get back to my dad's house so I can get a massage, eat some good food,and ride my GOLF CART!Oh by the way on Sunday I got pulled over by the police!The policeman said I could get a ticket. Of course my dad was with me though.Anyway,the photo thing with the lights won't take place until Monday and Tuesday next week.The rooms here are alot smaller,but they have lights that change color on the ceiling,DVD player,cable tv,and of course this laptop.Iguess I'm pretty comfortable here I brought my baby blanket "Deet-zee" and yes Aunt Deb, I brought my Duck.Tonight I'm going to try to stay up all night so I will just sleep all day tomorrow and not have to worry about not eating.Hopefully everything will go okay.Thanx for thinking and praying for me.Talk to again soon.
Amanda
Wednesday, November 12, 2003 9:45 AM CST
Hello Friends and Family-
Our Amanda is still beautiful, still amazing and still working very hard at trying to get better. We've had some great news and that is our team of doctors have put their heads together and figured out a way to get her into a therapy we had feared she would not be accepted for due to her low weight and age and due to the experimentality of it. An even greater fear was that even if we were able to somehow get her in, that the insurance co would deny based on it being very experimental and extremely costly. Miracles do happen. The insurance co approved and the devices can be modified to 'fit' our little pediatric patient (this therapy has not been done on pediatric patients in our surrounding states & is usually if ever done on adults).
So, what a relief!! We have been living on pins & needles waiting for this news. The procedure is called Extracorporeal Photopheresis (I think) referred to also as PUVA (photoinactivation using ultraviolet A irradiation). She will be hooked up to a machine that will remove her blood then run it through some sort of light that will inactivate the T-cells that are causing her chronic graft vs. host disease that has so far been unresponsive to the regular drug therapies. To get her ready for this, she's had to undergo a SLEW of tests (lungs, digestive tract, liver, kidneys, eyes) as well as having her looked at by occupational therapists to get her to move & excersize those joints that are stiffening up.
While all this was going on, we feared she developed an infection at the site of her shingles that left her with large (ITCHY) scabs. She had to go to the operating room where a pik line was inserted -- a cathedar type hose that went into her lower arm threading up & through to her heart. It was real painful for her and she was so upset that she was told it wouldn't hurt. A biopsy was taken of her suspect skin. This happened on Halloween and we worked it out ahead of time with Dr Hagstrom who told her going in, that she wouldn't miss trick or treating. She was out of the OR and admitted to her room on the 8th floor by 4pm that day. Medical staff wanted to get her 1st dose of the antibiotic running through this new pik line before sending her out for Halloween but 4pm turned into 5pm then at 5:30 she was full of tears and afraid her 'Spider Manda' costume would go unused when she was finally let out (antiboitic never arrived til later that night). Getting her into her costume caused so much paid and discomfort for her I was beginning to think this was too dangerous and too painful to be all worth it. She did it though. She was the coolest Spider Manda there is!! and she went trick or treating from 6pm til about 7:30pm. We borrowed a wagon her dad would use to pull her around in (shes been having a real difficult time walking) but amazingly, she was able to walk just about the whole way!! Amazing what a motivator candy is!! Also of note is this was her 3rd annual collection of candy for the hem/onc in-patients. She collected this year the most candy ever gathering about 40lbs of it!! We spent Saturday in her hospital room bagging up zip locks full of the stuff for ea of the 13 patients on our floor. The kids were all very happy and our Amanda felt good about it too!
She was discharged Mon afternoon (11/3) and I was a nervous wreck because I left the day before for a conferance in Nevada (of all places). Her grandmother (my mom) came and stayed with the girls so they were in good hands. People at the conferance must have thought I was a basket case. After each break, I'd get on the phone, my face awash with tears -- I had so many questions and so many calls to make. We got through it thanks to a very patient grandmother and Dr Hagstrom.
Amanda's schooling has been a struggle. I kept her out the week of 11/3-11/7 because she was still very sore around the pik line site -- there's so many kids that jam the hallways -- she was so very afraid of getting bumped that we stuck with just her tutor that week.
We had been ready for her to go back the the operating room today 11/12 for removal of the pik line & insertion of another central venus line (CVL) -- a double luman hickman cathetar in her chest (her 4th) followed by a thursday and friday stay in Boston when the PUVA would begin. I kept her out of school Mon because I couldn't see sending her for one day out of 2 weeks fearing she'd get upset at not following what was going on only to (later Mon) have the phone ring -- it was a Conn Children's rep -- a clerical or OR scheduling person telling me "we're all set for a 2:30 OR apt for 11/20". That was the following week!! What about getting the PUVA started!! What about Boston? What happened? What about a call from one of her doctors explaining what happened? I was upset -- we've had quite a few miscommunications (last thurs we were headed for Boston only to get a call on my cell phone they weren't expecting her -- and her 10/31 admission was (we thought) going to happen 10/30 -- we got there bags all packed Amanda mentally ready for the OR and her pik line only to get there & be told "Oops guess no one reached you to tell you we coundn't get a spot in the OR". Thinking I better find a way for the various hospitals and doctors to remember we're real people out here -- not just another appointment. Dr. Hagstrom is still our hero -- still out there giving 300 We realize he can't control what he can't control.... we still love you.
So now we are back to no plan. A tentitive one is that Amanda will go back to the OR next Wed for her CVL then we hope to get her blood treatment therapy started in Boston soon (thurs?fri?) thereafter. We expect this new therapy will continue for several months. We don't expect to see any result til after 1st 2 months of treatment. May be looking at 6 mos or so. Please pray that this will end her cGVHD and we will once and forever begin to get this all behind us and restart her little life!!!!!!!
Couple parting notes -- Emily is doing good. She's working hard at school. She's agreed to attend her church's youth group's 'Youth Quake' in Mass sometime end of Jan (?). That's good. She's happy and looks forward to upcoming holidays. Lastly, Amanda and Em received their very own golf cart!! A friend & neighbor of her dad's sister asked (as so many of you continue to..) "what can we do for Amanda?" Amanda's Make-a-Wish (MAW) would have been for her own golf cart except that MAW won't grant wishes that involve motorized vehicles (some chapters do). So when her dad's sister shared this desire of hers with the neighbor, they decided to give her one they purchased a couple years before that they had sitting in storage. Great huh? Except that the claims adjuster in me is in a fear frenzy (no seat belts -- weather -- snow ice...). Its kept at her dads. The girls assure me they are adhering to strick rules re its use. Amanda's so happy with it. Em is too!!
Guess that's enough for now (information overload -- sorry). I'll try to get better at these updates as we move torward this important next step.
Thanks for your continued support, love & prayers.
Love,
Mom
Monday, October 13, 2003 11:43 AM CDT
Hello friends. Amanda has had a hard time these past few months. Graft vs. Host Disease (GVHD) has gotten worse. Sterroids were increased and didn't help -- in fact she contracted shingles and was hospitalized for it. It was awful -- really, really awful. She was in SO MUCH PAIN and sufferred so much. That started on our way back from Dana Farber Sept 10. She began screaming in excrutiating pain and it was too far from Boston to turn back and we were only half way home. Got home and we started her on tylenol with codene and her pain didn't subside. Started piling on pain meds and four days later (Sat) she broke out in a rash. We started acyclovir by mouth and the following Mon she was admitted. She remained hospitalized through that friday and was sent home on IV acyclovir along with 3 or 4 other pain meds. Its unbelieveable what it did to her.
She looked as though she was attacked by a bear -- huge gaping gashes in her skin. The same varacella virus as chicken pocks only not the little pimply things -- these pockets of fluid were really large. It left her with open gaping gashes in her skin that were raw and soooo painful. Through it all she remained brave and strong. This happened because of the increased sterroids and immune suppressing drugs shes been on to fight the GVHD that hasn't gotten better. Instead of her coming off them, her condition worsened , sterroids were increased and this virus that was in her got kicked off when she had no fighter cells to hold it off. She hasn't been to school -- she only got to go for the 1st couple days when this happened. Shes had her favorite tutor back -- Rayette Burns. So much has been on our minds.
She's been struggling with her large puffy cheeks she can barely see past and her arms and legs are so enlarged she can hardly walk. I carry her alot. GVHD treatments haven't worked. On top of the shingles (a set back) now we are looking at having another line (CVL) put in and she will have to go to Yale New Haven for a proceedure that (over several months) removes her blood, treats it with some sort of light that manipultes her 'T' cells then returns it to her body -- something Hartford Childrens and Boston doesn't have. She's on so many meds. Actually, she's been weaned off the pain meds and has in fact started backing off sterroids (40mg/day as opposed to 50) but thats not because ther're working for her. She's been real blue. Crys sometimes and misses her friends. While we wait for the next step in her treatments, she's actually been told she can retun to school but I can't see that happening since she can't go up and down stairs or carry books. We'll try to work out a part time in school, part time tutoring plan and I'll go with her to assist her. Not sure how that will work out -- I don't want my presence to embarrase her. She's tired of people staring at her. We both hate that. Kids in school may make things worse. Not sure about so many things. We wer so hoping to put all this *&^$#@!** behind us but she's still in the thick of it -- fighting the good fight. My employeer (The Hartford) and my co-workers have been great -- allowing me to remain at home to be with her. Working at home is so hard esp since she has been so unable to do anything for herself. She's been feeling bad about that. She's so sweet and so afraid she's asking too much. I love her so. The one good thing is we have not yet been fearing a return of her cancer. While that's always on our minds, the presence of cGVHD has held it off - hoping it gobbled up any bad cells that may have been in her. Its not all bad -- Amanda is so strong and can still laugh and is really remarkably making the best of it. So glad to be home with both girls. I love that. Emily just had a birthday (Oct 11). She's 13 now. Shes been good. Struggling with finding her place. She seems happy though. I'm so blessed with 2 strong, beautiful, smart girls. they keep me going. Keep them in your prayers.
Love, Judy
Wednesday, August 13, 2003 1:41 PM CDT
Home with mom and sister Em. Amanda has had fun just bein' home, eating, going to the movies, eating, sleeping late, eating, going shopping, eating (pattern???). EATING & more EATING!!! Good thing I'm home with them (home on vacation) this week. She's a full time job! Cooking, cooking (don't get me wrong -- I love cooking & being needed by my girls -- I love doting on them) eating, eating. Poor Em. she's at that stage where she is on track weight wise but could go either way without working at it -- Amanda's SHOVING it in!! Em's trying hard to make the right choices - be healthy, eat healthy and do some excercise most days. Think I'm somewhere in between. Being around such an eater is HARD!!
Sterroids (bet you guessed). She lost about 10 lbs over a 2 mo period. This, her skin rash getting worse and hair loss all resulted in a shift in meds that include sterriods -- not a high enough dose to wreak havock. We worry though since immune system-wise, this degrades an already degradded system and bone brittelness --another potential peril. They've helpped her though. SHE'S HUNGRY ALL THE TIME. We'll be careful -- know readers are thinking 'better not over due it' but we're on it. She's about 25 lbs under weight for her age group (factor in lack of height puts her at least 20 lbs under for a shorty like her..) so she's eating but guided to eat healthy -- she is a good eater (fruit, salads) normally -- she just lost her appetite. Don't know why. We'll see what happens after she's weaned...
She's back from an overnight at Boston Ronald McDonald House (RMH) where she, mom & Em went Tues evening to be there & ready for Wed Dana Farber morning apt. Since this is vacation week, we took a taxi downtown to EAT & go to Fanueil (sure I got THAT spelling wrong..) Hall, then eat, then Quincy Mkt (where she ate), & more shopping. Was way fun. My 2 girls were so stupid funny (you know I know my girls are NOT stupid -- we all should get stupid silly sometime... note: I actually just caught myself spelling stupid wrong -- 'stuipd' ....). Lots of giggling and poking around. They love each other so much. We had DINNER then left for home (RMH).
Up early Wed (so she could take meds get dressed do bedrooms (@ RMH, you arrive to newly made beds & your responsibility to make it same way for next fam -- pretty ok that way -- we bring our own sheets & towels though, otherwise, you have to launder -- fold, dry, put away, and get place totally ready for next family -- this way it saves alot of time -- not so much a pain when your there for weeks on end -- but for an overnight -- better off bring your own then changing back next morning). We made sure she had plenty of time for BREAKFAST.
Went to clinic and she's doing good. Looking better. GAINED WEIGHT!!! S*U*R*P*R*I*S*E!!! OK. No surprise. Good news for her though. 3 lbs in 3 weeks. Her face was gaunt & emmaciated (sp?). Now looking much better of coarse concern that she's blowing up. She is not too worried about that since we are keeping close watch and expect to down grade dose next few weeks. she ok with the plan though it may involve adding another med. She understands that this may be a tough year but was told today the expectation is that this GVHD will get under control. Her skin developed more blotches because of the summer sun. Everyone has been vigilant (her RI trip had everyone slathering it on and they promissed me same after Hole in the Wall Camp visit). This week, even though we have rain everday mixed with thunderstorms, sun peeks out enough to need protection every day. Even with all our vigilance, skin blotchy and now not just on her torso. She looks much better though. She has no other complaints (waiting on counts from earleir today -- back to that acid, anxious, achey, stomach pit waiting stuff). Nothing getting in her way. She's great & happy.
Wanted to just get this out after last entry when there was this new overhanging gloom. Met with cheif of Ped. Onc Dept at Dana Farber and we walked away feeling like we can plan...
Thanks for checking in.
:0)
Monday, August 11, 2003 11:50 PM CDT
Guess we're back on a sort of 'high alert' for our Amanda.
Graft v Host disease is 'severe'. We go to Dana Farber now every other week instead of CCMC. Not sure about anything anymore -- thought we were doing great -- moving in a great direction -- thinking this was all going to be behind us. I was reminded how tough her relapse diagnosis is re survival. I never knew what her relapse diagnosis was.
Head too full to think. Not sure how to react to the talking to I got ....
How should I feel? I do feel pretty crappy knowing now what the rest of medical staff has known.... I didn't know. I (we) never thought or knew anything else other than she was doing great and a 'all clear' was to be pronounced @ 1 1/2 yr post transplant -- now -- guess that was never in her plan. Soo caught off guard... Soo not liking that...
Not sure how to feel.
She feels good -- looks not-so-great..is having a great summer. Went to Hole in the Wall. She loved it. She finally went on her dad's family Rhode Island vacation (she missed it 2 years in a row -- so hard for her to see her sister and dads whole family go off each year without her esp when there was nothing at that time she wanted more....) She had a great time. She's having a great summer.
Not happy (mom) knowing now what I know -- wish I was looking at her with the same eyes rest of medical staff had the benefit of -- seeing her happy for the moment. Happy.
Feeling empty. Unsure. Not sure who to go to... Guess that will be our ROTATING Boston staff. Feeling scared, sad, crappy.
Pray for her...
Friday, June 13, 2003 5:38 PM CDT
Addendum (6/17/03) ****
Since last update, Amanda has learned she received straight A's for the 3rd consecutive marking period earning her the Gold Presidential Award (all A's, all year!)!! Quite an accomplishment considering...!!
Congratulations Amanda!!
Hello.
Everything is ok here in Amanda Land. She's good, Em's good, Mom's good. We're all looking forward to the summer. Amanda's school gets out next week. Trying to schedule their days is hard. I need to work with their Dad on this. Don't think I mentioned that they are back to week with mom, week with dad. We alternate weeks and its hard to plan their coverage. This summer, I have them going to family and friends during my weeks with them & I'll be home with them for one of the weeks but I've run into a scheduling/coverage glitch. Wringing my hands trying to figure out what to do. It'll work out -- it always does.
Amanda has been feeling great. Her mouth issues seem to be clearing up. That super yucky rinse and spit med has been discontinued (she's glad) and the only hairey scarey thing that popped up was a bump she found on her neck. Last Sat, she pointed it out to me & I freaked. I called the hospital for the attending phyician & of coarse it was Dr Hagstrom who CAME TO THE HOUSE!! Dr H came & it turned out to be nothing. He goes out of his way for Amanda. He's still out there giving 200% :0)
Both girls got their ears pierced! Thier pediatrician Dr. McGilpin did it earlier last month. It's the 2nd time around for Em -- 1st for Mand. They both look nice w/ their gold studs. Dr H gave Amanda earrings for her birthday... *<:0)
I was so proud of my Amanda -- her teacher is retiring and she really took Amanda in like a mom. This woman is so sweet and loving -- she's a cryer -- very religous too. She had Emily when our diagnosis came and asked for Amanda when it was time to divi up the kids into claeese (very brave of her..). Amanda read a thank you letter outloud to her during her recent good-bye party the kids threw. In it she thanked her for being a teacher and said if she were to giver her teacher a grade -- she'd give her an A++. She thanked for for being like a mom to her (her teacher and all the moms in the room were balling their eye out after her 2nd sentence!) and she thanked her for getting her all caught up and she went on to say she ws sorry for all the other 5th graders that wont get the chance to be her students. Amanda did great. We were lucky to have Mrs Z as our 5th grade teacher.
She was also the introducer/welcomer for her 5th grade DARE graduation. She got right up there -- introduced the mayor , thanked everyone for coming, etc. Piece of cake! She's a beautiful, smart, composed little girl. Somehow, what she's been through has empowered her. Having so many adults leaning over you, hanging on your every word and feeling and knowing how loved and special she is has lifted her up. She's this confident, strong little girl (let's see what 6th grade does to -- I mean, FOR her).
That's about it. I'll probably add more to this later. Clinic next Tues -- oh yea! At clinic last time (6/3 I think) they didn't even do bloodwork!! There's a sign she's doing good (actually -- the time before that was kind of not fun -- couldn't get a good vein in the back of her little hands --she was not happy:'( -- I think Dr H was giving her a stress break.
Thanks for checking in.
:0)
Sunday, May 11, 2003 11:15 AM CDT
Your mother is always with you. She's the whisper of the leaves as you walk down the street: she's the smell of bleach in your freshly laundered socks; she's the cool hand on your brow when you're not well. Your mother lives inside your laughter and she's crystalized in every tear drop. She's the place you came from, your first home and she's the map you follow with every step you take. She's your first love and your first heartbreak and nothing on earth can separate you. Not time, not space, nothing.
Friday, April 25, 2003 8:16 PM CDT
I am so sorry to let so much time pass without an update. Things are good though. Amanda is back to school full time (she had been, then she was back to home tutoring -- so much school illness, then returned to 1/2 days in, 1/2 w/ tutor but now she's back to full days again). Reports cards came again -- all A's (again!!)!!! We are so proud of her, her accomplishments -- how far she's come.
Let's see... her line is out!! That went ok. She still hasn't gone swimming (I know -- I'm such a mean mommy). She hasn't really been pushing the swimming thing -- ok with me. She would have to stay away from the locker rooms and I'd try to get her there there 1st thing -- 1st swim (inside pools -- you can just breathe in the heated, heavy, germy air...). It'll happen. We celebrated her 1st Anniversary of her 2nd Birthday April 24th (translated -- it was her one year out of transplant April 24th). I took her & Em to Applebeas. My co-workers are so nice -- they sent me home with flowers for her to mark the event.
She woke up today freaking me out a little when she complained of feeling nausous. She actually did get sick but no fever (didn't even call the clinic -- soooooo not like me) and she was fine afterwards. I wanted to keep an eye on her though so I took a vacation day from work to be with both my girls. This was their vacation week and I felt bad that we couldn't go anywhere. She was supposed to go to my mom's but that didn't work out. I am back to work full time which has been hard but with some adjustments here and there it's working out fine. Amanda, in fact, hosted a 'Thank You for Supporting Me During My Cancer Treatments' breakfast last Tues. She and Em & I set up a nice spread and everyone there was so glad to see her and how great she looks. We included an art show -- displaying her many paintings she & Kevin (CCMC) produced. All were very impressed!! She presented everyone there with a gold cancer awareness pin and informational pin card. The president came and received one too (no I didn't bring a camera...). My friend Marilyn and Mand are so funny together. They are their own side show. It was a great but busy morning with her clinic appointment immediately following.
She celebrated her 11th birthday!!! It was April 17. She had a bowling/sleepover party and had a great time. The whole bowling thing still creeps me out (GERMS!!!! tons of PEOPLE!!!) so I (as part of her b-day gift) bought her her own bowling ball, shoes and case (made ME feel a little less skeeved out anyway..). She invited a few girls from her class and they laughed, told scarey stories and giggled until 2AM!!!! They were up at 7AM!!! (Help me!!!!) They all got along so well and enjoyed each other. I love throwing their parties and as usuall I went overboard. Who wouldn't... I'm just so glad she's still with us..... we are so blessed. Just typing the word 'blessed' makes me think of none other than -- Dr. Hagstrom. We are blessed for many, many reasons and he, he is still so huge in our lives. I haven't written in so long -- thinking back to Valentine's Day, I was wondereing whether Amanda could get flowers and I decided on the safe route opting for the traditional candy, etc. when who, later that day, sends her flowers as a Valentine but Dr H!! But wait! There's more!! Amanda has been wanting to get her ears pierced (another post bone marrow transplant 'yike') when Dr. H presents her with earrings for her birthday!!! I so love him, Amanda so loves him WE ALL LOVE HIM!!! We are so blessed.
Easter was Happy. At church that morning, the girls & I were ushered right down IN FRONT! and both ministers were just so happy to see her and Em back. I was fighting back tears the whole time. They gave her a beautiful plant to take home. Mand & Em enjoyed the usuall Easter traditions of Sat night egg hunt by flashlight (something I started when they were little) followed of course by dying eggs. That (Easter) morning, the girls were up early, yanking me out of bed wanting to search for their baskets outside. They always find them within seconds but they still so love to do it. As usuall, there, inside their baskets, nestled among all the other goodies, was that one plastic egg they both save for last (they tear through the other goodies and doo-dads 1st) then once satisfied they've 'snuck' enough breakfast chocolates, they (together) head off on their favotite hunt. My mom did this when my brothers, sister & I were kids. The egg inside the basket, once opened up, contains a clue to where the next hidden plastic egg is. Once they're able to figure out it's hiding spot, that egg is opened up and out pops another clue to the next and along the way they discover more small gifts (I think our Easter Bunny likes the dollar store) things like, a butterfly net and bug case to (temporarily) capture bugs, fireflys, or the crabs they love to catch in Rhode Island. Another 'find' was a soccer ball. Nothing big.
Oh yea!! Amanda started soccer!!! Her first game is this Sat!!! her team is the Hurricanes!!
What else... her summer is filling up. They will spend a week or two at my mom's. Then, the third week in July is her week with her Dad and his family in Rhode Island. She will be at Paul Newman's Hole in the Wall Camp 1st week in Aug. Her CCMC friends Chelsea and Nathan will be there that week too as well as Dr H (!!! I'm so glad !!!)who for the past 5 years has attended camp as one of the staff phyicians (they and the nurses give up a weeks vacation to do this) always on sickle cell week -- this year because its Amanda's year to go, he has changed his week to hem/onc week. He changed his week to be with her. Her artist friend Keven Rice will be there too! He's in charge of crafts or activities (something like that) so she will be more than fine.
Still hasn't decided on her Make-A-Wish yet. She toyed with Hawaii, then was thinking about Disney Cruise (Chelsea and family just got back -- they came over all aglow last weekend -- so happy with their Make-A-Wish trip). She can't decide. She's also toying with the possibility of seeing if she can do something like attend the MTV Music Awards. It's hard!!
I guess the only other notable event was a hospital admission. Yup. She got a fever. Woke up with one Sat April 5th and off to CCMC to be admitted she went. Dr H was there getting caught up on some work so he checked in on her. Tania was her nurse that day and Beth was her nighttime nurse. All her fav's! Made it bearable. She felt pretty crummy when she got there but as soon as they drew blood, they were able to give her a tylenol and she felt fine from then on. Mand, Em & I made a slumber party of it. We ordered lots of take-out and tried to have some fun. The next morning I took my early morning run around the hospital campus (felt sooo wierd). Dr Altman told us a two days stay at times like this was the standard. Amanda was NOT happy (started to cry). Em, Amanda & I tried to make the best of it -- we zoomed through and around the halls on wheelchairs and made a wagon train zipping in and out of hallway traffic. They let us go at 2 o'clock (wonder why??). Sure felt diffrent this time though -- not being there so shell shocked this time made me look around at the many things that could be done to make the CCMC Hem/Onc floor a more comfortable place. Some kids are there for so, so long (some don't go home). Simple things like a small table & chair to sit on and do school work or read the paper. A fun lamp for the night stand. A picture on the wall would be nice. I'll work in it...
Well, this is what happens when I let too much time go by. You get stuck reading my endless streaming words..
She's doing ok though -- medically the GVHD is still present -- her skin rash is actually looking worse today and there's some joint stiffness -- also GVHD related. We've managed to dodge Boston these past few months but its looking like we will have to make a trip up soon -- looks like end of May.
I guess that's it for now -- Em's doing good too -- she and her sister are looking forward to going to the 'Good Charlotte' concert in NJ 1st weekend in May. Always good to have something to look forward to.
Night for now.
Love you all.
Please continue to keep her and all the other children in your prayers.
Judy:)
Saturday, February 1, 2003 4:34 PM CST
Late Tuesday afternoon Amanda & mom left for Boston. We had a Wednesday 8:30am apt at Dana Farber so an overnight at the Ronald McDonald House seemed a good idea. We stayed in one of the bone marrow efficiencies. This time Amanda got to EXPLORE the house -- no one else seemed to be milling about.
We saw Dr. Lehman who told us Amanda in fact has graft vs. host disease. In her mouth. Not sure what impact this will have on her. White blistery bumps are all over her mouth making it hard to eat (she's lost 3 lbs) but she doesn't complain that it's painful except when she brushes. Now instead of doing a yuckey 4 x's /day rinse & swish, she has to do 2 diffrent ones ea four times a day. We are warned this may be a chronic condition that may take a long time to bounce back from each time. So far, there's no indication that its effecting any of her other organs. The good news is that gvhd cells kill leukemia cells -- so its not entirely bad.
Her rash is getting better -- hoping its a risidual side effect of the bactrim she was taking.
A new development is some sort of muscular or nerve issue in her hand and now her feet. She was crossing her fingers last Sat (trying to give the Buccaneers good luck) and after she uncrossed them, they WENT BACK THAT WAY -- ALL BY THEMSELVES!!!! Way weird. Its happened a few times since then involving several fingers -- we call these 'tangling' episodes. She experienced a similarily weird reaction in one of her feet. Hoping this isn't the central nervous systerm virus (another thing you fear and test for along with gvhd and other things). Amanda has her doctors scratching their heads over this one...
These are relatively minor issues compared to the great news that still rings in our ears that there were no leukemia cells found in her bone marrow. That hasn't changed. Tuesday she is scheduled for the OR in the afternoon when she gets her central line out!!!! We are still on track for that. Another big step in her treatment follow up. She will be so, so glad to get rid of that hose that's been stuck in her chest since diagnosis and me --I so look forward to having one less medical task to do. Caring for a central line is alot of work. She will have pain afterward though. She wants to go swimming. Hoping our next entry is a swimming tale.
I wrote to our minister about "Laura's Pennies from Heaven" and he is excited to kick it off! What a great idea that started during Laura's final days when she and her sister were planning how Laura would let her sister know she was with her. Laura's mom explained that Laura told her sister she will ALWAYS be with her, but that every time she saw a penny, it would be a sign Laura is there. From there, they took the idea to the next level. That's when they came up with 'Laura's Pennies from Heaven' as a means for gathering spare pennies when every time they get to $100, they'll place a $100 bill in an envelope for cancer families where the parent has had to quit working to care for their sick child -- something Laura's mom (there is no dad) had to do. The girls & I thought this was a great idea. Who doesn't have a bunch of spare pennies lying about?
It wasn't even a week after Laura's funeral that I discoverred Laura was already at work watching out over her cancer families... I had a dentist apt and upon exiting, I made sure our balance was zero (after being dangerously close to collection activity this summer -- I had to use some of Amanda's fund raising money to help pay this large dental bill of Emily's). The girl behind the desk said that not only did we have no balance, but we had a $100 credit!!! No kidding!!! Any one of my family member reading this KNOWS I will NEVER BE accused of OVERPAYING my bills!!! I drove into the office to go to work that day after my apt, and then driving home that night I thought "..boy -- pennies from heaven.." and it HIT ME!! It was LAURA -- OUR NEWEST ANGEL -- AT WORK ALREADY!!! I am not kidding! Tears came like a flood. Any help is welcomed by cancer families like us where there is only one parent provider. Miracles happen everyday -- we just need to recognize them for what they are.
Well, good news, not so good news..
We'll be ok.
Thanks for checking in on Amanda. She's ok.
Saturday, January 25, 2003 at 11:55 AM (CST)
Well... Amanda's ok.
On Thurs, Dr. H informed us that the more detailed -- machine view of her bone marrow fluid by the cryogenics (sp?) lab was CLEAR!! It's CLEAR!! It's CLEAR!! No leukemic cells present. Thank you God. This is the news we've waited for all these months. That's not to say those creepy little #%$#@!'s won't return. She's not out of the woods yet. I think we'll take a look again at her year anniversary (?). I've read too many stories, have followed too many AML kids where at their year BMA, found disasterous results. We will still wait, hope and pray but for now -- ITS CLEAR, ITS CLEAR, ITS CLEAR!!!!!!!!!!
I feel awful -- last week as I was pacing and getting frantic wondering why Dr H hadn't called as we waited to hear whether any blasts were found in her marrow (I knew he would call -- I was just at that point where I was about to explode -- just couldn't wait) he returned my page apologizing because of the bad day he was having, & told us her initial view looked clean, that her issues were most likely minor but he had to go, he would call back. He called Tuesday and explained he wanted to see Amanda the next day to check on her and talk more about what were were going to do. He also explained and apologized for not being able to talk fri when I was in a panic. He told me a child died right in his arms that day. Right in the clinic. Right in his arms. I felt awful. That's why when someone says they're having a bad day -- it will never compare to those same words coming out of someone like Dr. Hagstrom's mouth. We love Dr. Hagstrom. How does he stay so strong? Amanda couldn't possibly be in better hands.
Amanda was pulled out of school last week for a couple weeks until we know for sure whether what she has is in fact a bit of GVHD. If it is, her immune system will be surpressed, making her even more fragile so back to home schooling. So glad her tutor is flexible. Trying to get her back to 10 tutoring hrs now that that's all the schooling she'll get. Amanda was ok with this. Her friends at school may need a visit by me just to let them know she's going to be ok. Her class is so sweet -- they clap for everything. Her fist day back, she raised her hand, answerred a question correctly and THEY CLAPPED!!! I almost cried. She raised her hand and read a passage that same day from their social studies book and THEY CLAPPED! So sweet.
We went to the clinic Wednesday and Amanda's rash wasn't getting any better -- in fact her face -- around her eyes was getting a reddness and her mouth -- we still haven't figured that out. New medicines were prescribed so we're hoping this will heal her. Bone marrow patients we've learned are treated very aggressively. The biopsies (of her mouth and skin) both came back negative for yeast/thrush and GVHD. She was prescribed a vascelline type topical ointment I have to slather her in 2x's per day (yuckey) over her WHOLE body & its helped but it really is yuckey! She has to do a mouth rinse now 4 x's/day THAT TASTES SOOOOOOOO BAD. It's dexamethasone -- be afraid. I did a rinse with her to show her it wasn't so bad. It back fired. I had this crinkled up face for about an hour. These kids really are troopers.
We go back to the clinic Mon so Dr H can give her a once over before Boston Wed and to take her stitches out. Hoping to get her issues under control --we may have to start up some heavy duty steroids which we don't want to have to do. We'll see.
My Emily -- I'm so proud of her -- was just selected for her school's Artist Hall of Fame! She was born an artist. She already has her sights set on attending Massachusets Art Institute (just down Longwood Ave past Children's Hospital). I would love to take a photo of her out infront of the school at age 12 then again as a student at 18 -- trouble is we all hate our Boston/Dana Farber visits & its hard to make a mid-week event of it (I know her Dana Farber doctors haven't figured out how to read their patients web sites to know whats happening -- what's on the families minds like they do at CCMC so I'm not worried they'll find how we feel about our trips..). Maybe we'll make a Monday apt next time and stay overnight Sun at the Ronald McDonald House so we can spend Sun actually enjoying the sights -- taking that photo. Something to think about.
More excitement came Thurs when I flushed Amanda's line and it SQUIRTED OUT!!! FROM THE SIDE!!!! The line was TORN!!!! OH MY GOD!!! I raced her into the clinic -- Amanda crying - me almost -- another one of THOSE rides into the clinic where you have no idea what the outcome will be. We got there and nurse Sarah, under Carol's watchful eye, did a line repair. In about 15 minutes the line was cut, a new one attached with a clear tube sleeve glued over the connection and voala! Good as new. Man... what a drill. Dr. Gillen came in to oversee the repair and it was already done!
Dr. Hagstrom caught up with us (of course carving out over 2 hours for us in his already jam packed day!) and told Amanda he needed to take her line out if possible right then, right there in the clinic. Amanda was very brave. As soon as Dr H left the room to get ready, she crumbled in my arms -- very scared, very emotional. She was going into the "Fish Room" -- prompting bad memories of her first few bone marrow aspirations and first spinal taps under a general anethesia -- a dopey medicine that doesn't knock you out -- just makes you stupid. Kids don't remember the proceedures generally but Amanda did. She totally freaked out that last time we tried to do one that way and ever since, she's had them (and lumbar punctures) in the OR. So on this day when she learned she was going back into the "Fish Room" to have her line removed by hand w/out being knocked out, it was a tremendous blow. But together with Dr H by our side, we had a plan. If the line could come out easily (the reason we thought Dr H could easily do this is the cuff that rests behind her skin that holds the line in place was seemingly coming out!), Dr H would just slide it out -- if not, if it started to hurt, he would stop -- he would abort the mission. He tried, she cried, he stopped. Our date for the removal (in the OR!!) is Feb 4th.
Whew. What a stressful couple weeks. My job is really heating up too these last few weeks. I don't think they can tolerate my lack of performance for too much longer. They've put up with all the these last minute clinic apts, emergency visits, etc, etc that come up. They've been so patient but I truly feel my days are numberred. I have to do what I have to do so -- I'll do my best, but I would understand if they let me go. They have been overly fair and tolerant. I won't leave Amanda's side. Just learned they're hiring a new subrogation paralegal (my job). They've really bent over backwards for me...
Between Amanda's on-going issues, my work issues and loosing another beautiful girl to this disease -- our beautiful, sweet Laura, not to mention the boy in the clinic, its like now, somehow, these kids empower you and --believe it or not -- I can handle it. I can handle anything. Not the loosing children part -- that will ALWAYS knock you out -- then you GET UP & you're stronger. I think at this point, you get to the level that after (me) bottoming out Oct-Dec, now -- I think I'm ok. Especially now that Amanda's ok -- and my sweet Em -- she's ok too. We'll be fine. God provides.
Take Care,
Hug your Kids. Tell those close to you you love them.
Sunday, January 19, 2003 at 07:57 AM (CST)
Amanda's ok.
Her bone marrow looked clean. I think there's a more detailed view (?) that we'll see in about a week (?) but I'm still waiting to hear back from Dr H.
Friday came & I didn't hear anything -- I couldn't wait any longer so around 6:30pm or so I paged Dr H. He ALWAYS returns my call in a matter of seconds -- this time for whatever reason it took FOREVER (probably 10 min). Of course I was thinking the worst. He returned my call to say her problem is most likely minor. He told me about the initial view looking clean and that the 2 biopsies (they did end up taking a skin as well as a mouth sample) will take about a week (?) before we know definitive results but that he still wanted to speak with me. I haven't heard back yet...(!) I wanted to update our family and friends with what I knew. He also indicated he's just about ruled out GVHD but it he didn't sound definitive...
Mand did ok. She did wake up crying (poor baby). We had our favorite recovery room nurse Natalie who brought morphene and that helped. She gulped down a cheese burger and strawberry milk shake (she was SO hungry -- the proceedure didn't take place til about 3pm -- she hadn't eaten) and her Bugrger King meal made her happy. I kept her home from school giving her pain meds round the clock and by the next day (yesterday) she was pain free. She has a couple stitches in her mouth and on her back where the samples were taken. She's a trooper.
More later...
:)
Wednesday, January 15, 2003 at 07:31 AM (CST)
Please pray for Amanda. This thurs she will have a couple surgical proceedures done at CCMC's O.R. She has had a kind of thrush in her mouth that several medicines have not worked to correct -- she will have a biopsy done of her mouth. She has also (now that her immune supressor drug has stopped) developed a rash -- this her doctors will (possibly) biopsy too (to rule out graft vs. host dieease) and while they have her knocked out, they will also do a bone marrow aspiration. This means thurs we will know if her cancer is gone (or not). Already I can't stop crying as I write this. Thurs will almost be unbearable for me. Praying all will go well, she'll return to the OR the following week (?) to have her central line (her 3rd!!) removed.
Thank you so much for your love and support.
Wednesday, January 01, 2003 at 07:12 PM (CST)
Happy New Year!! May the best of 2002 be the worst of 2003...
With 2002 out of the way (what a TOUGH year -- Amanda made it through!!!! -- GOODBYE 2002!!!!) we look forward to getting as close to 'business as usuall' as we can. I never thought I would strive for 'status quo'..
Christmas was quiet and very nice. Amanda and Em had a good time at Grandmas in NJ then traveled back to CT for Christmas part II the next day. We had a Secret Santa leave gifts for the girls & I -- that included very thoughtful things and so much! We don't know who it was -- someone from our church I know -- I met with our Rev Keirstead wed 12/18 for an hour or so and he told me that a young person in our church read a story about someone who was a secret santa for a family and was very moved by this and wanted to do the same and picked US!! Thank you Secret Santa!
Being home at my mom's with my children and all my brothers and their famillies was very enjoyable. Me & my sibs and mom quietly shed a few tears missing my dad (died 12/25/00) but we were happy and very content. I ran my 1st 5k race with 2 of my brothers and it was great. It was great running with them especially since we all live in diffrent states!
There was no big family get together as we thought which was ok with me -- esp since Amanda's return to school and return to that huge germ exposure has made me a nut. There'll be other times. I've already gotten calls from 2 of her friend's moms about infectous children -- one with chicken pox!! She wasn't exposed though -- I'm VERY nervous about school tomorrow into next week -- this is when all the children return to school with new colds from Aunt Millie from Oklahoma and uncle Bob's FL cold. We were advised to have her return AFTER Jan and the colds and sickness the children retun with -- her return in Dec was partly because of her doing so well and partly because mom wasn't. It's been crazy wild busy but with the holidays over, we'll look forward to getting a healthy productive rhythum going.
So, Amanda's good. Her immune suppresser drug (cyclosporin) has stopped completly so we will stop the nighttime fluids (tonite's the last night!!!) and some of her others meds have been decreased and new ones added but she's moving in the right direction. We will hear soon about when we can get her line out -- we have to see how she does drinking fluids on her own. Boston this Wed. so our week will feel chopped up now that I'm back to going into the office and Mand is off to school -- hoping to get those Boston trips cut back. It has been getting tougher and tougher to get Amanda to not mind trips to the hospital -- for her its getting really old. Me? I look forward to them -- to talking with her doctors. OOPS -- I haven't said it yet -- We love our Dr. Hagstrom! We wish him and our wonderful nurses and doctors and their families a great new year -- we love you all (especially our Dr. H -- such a wonderful man).
Love, Judy, Em & Mand
P.S.
Our friend Laura Santiago from Avon,CT needs our prayers for a miracle. Her family could use any financial assistance they can get (I don't believe her last attempt at cure at Slone Kettering was covered by insurance). Please consider this family and their need. Such a sweet, sweet girl.
Santiago Fund
A fund has been established to accept contributions to Laura, Joanne, and Joelle. Make checks payable to Joanne Santiago and mail to:
Gail O'Connor, Branch Manager
Fleet Bank
240 West Main Street
Avon, Connecticut 06001
Sad Update:
January 6, 2003
We lost Laura Saturday. Our hearts are so heavy. We are told she slipped away peacefully.
Monday, December 16, 2002 at 05:44 AM (CST)
Hello!
Great news -- our Amanda returns to school tomorrow!!!!
Half days. Mom will be with her. Seems with reaching each benchmark goal comes new worries -- like being so excited about Amanda's homecoming from Boston and how scarred I was that she was now my full responsibility to keep her sickness free. Well, this is similar -- school, GERMS (!), kids, outbreaks. These are some of my immediate reactions. Amanda's reations were quite diffrent -- overjoyed doesn't cut it but it's pretty close. She's thrilled.
At our clinic appointment two weeks ago, Dr. Hagstrom floored her by asking if she wanted to go back to school and when Amanda asked how soon, he replied "how about in 2 weeks?" I thought Amanda was going to fall off the exam table! Sheer delight overcame her. Pan over to me to see the exact opposite reaction -- eyes bugged out mouth hung open with a 'what do I do now?' expression on my face. We're ok. We came home that day and we made about 10 phone calls (Bd. of Ed, principal, teacher, tutor, etc) and set up meetings with them that included Amanda of coarse. We mapped out her days -- she goes tomorrow through fri then she is off for the holiday break -- so those four 1/2 days @ school will be a good way to slowly slip back in to the swarm. She will still be tutored those days in the afternoon which will be a long day for her. She won't mind. She loves school. She's worked so hard at it. Report cards came and she received all A's (Dr. H you didn't read this -- Amanda wants to surprise you..). Last year this time she was home schooled and received all A's only to suffer the comments of other children accusing her of 'not really earning her grades -- she just got good grades because the teachers felt sorry for her'. That hurt her so much. I'd like to see anyone suffer through the chemotherapy regiment she went through while enduring schoolwork -- studying through it, and see what grades anyone else would get. She's very bright, excited to get back with her friends and I'm sure will suffer the same comments. This time, she'll be in class-- she'll kick butt! We still watch for the effects the radiation had that still may surface. I'm so proud of her after all she's been through.
Last Sat Amanda had a study groug with 2 of her classmates who have been meeting to work on a special (big) school project together. Later that day our tree was put up thanks to Tania Cantarutti!! one of Amanda's CCMC nurses!! We love you Tania. She came over to work with Amanda's sister Emily on a science project on cancer cells (Em's class is studying cells) and they did GREAT work!! We had a nice lunch, Em & Tania returned to finish their project while little miss Amanda single handly put together the tree we bought! She's only about 4 feet tall but she and her sister are not arfaid to tackle large tasks. Em and Tania came downstairs just in time to decorate and Tania stayed until we were through -- she did the lights ( I hate that job). I owe you. They will present their project to Em's class Wed morning. Em's science teacher is going to video tape it for future teachings. I want a copy.
Alot going on. Christmas shopping over the internet is a beautiful thing -- esp when you're homebound. I actually purchased an item after watching an 'infomertial' -- scarrey (I've been home way too long..). Girls leave for a New Jersey Christmas this Sat (4am!). I am hoping to be in a race with my brother Andy that afternoon -- we'll see. Big family gathering this Sat. a kind of coming out for Mand. I've kept her sequestered from all but my immediate relatives -- this party will be the first time in a year she has seen most of them (mom's surprise 70th b-day party was last Mand saw these aunts & uncles it was 12/16/01-- next day, back for clinic apt 12/17 and we learned cancer was back -- she & Em spent Christmas in the hospital). We are looking forward to it. My oldest brother Glenn will be home! with his beautiful wife Linda. In from Colorado. Last Glenn saw Mand was the day she was admitted to Boston Children's. Saying good-bye to my family that day was pretty tough. We're home, she's good, family's waiting, back to school, mom back to going to the office, it's Christmas! Doesn't get any better!! God is watching us. So is Dr. H.
Love and Merry Christmas to you all. Please pray for our other child cancer friends especially those who can't be home for Christmas.
Mom
Saturday, November 30, 2002 at 01:07 PM (CST)
Hi.
Hope Thanksgiving was a happy one. Amanda and Em enjoyed theirs.
Nothing much to report (thankfully). Amanda is doing well. She's been on steroids. This time its caused some emotional outbursts -- hard listening to "I hate you!" after going through so much with her but I know and she knows we love each other very much. Being a single mom raising two daughters one recovering from cancer treatments is a role this mom will not attempt to claim to have any skill at. There are no books for divorced cancer moms. As long as Amanda remains home unable to attend public events or school, I have to remain home too. It's hard. Feeling trapped. Seems that keeping the girls happy means for now that I have to keep no outside life. It's tough. Not getting easier. We haven't been able to meet with our family therapist for over a month. We're due. The girl's dad has expresed an interest in attending the sessions after a very tough emotional week last week. It will be good to include him in on the difficulties us three girls are facing mentally, financially, socially. Because Amanda continues to move forward with no issues (uh-oh tempting the jinx gods..) she should be able to spend more time at her dad's. This will be good for her. Amanda's had a good couple of weeks, mom hasn't. I'll be fine (am I not forgetting this is a web journal to record updates on AMANDA -- not me -- sorry -- seems I need to vent a little). Not many visitors to thie web page lately -- I guess I'm counting on that with this entry.. It's hard going through this alone. I miss going to church, going into the office -- being an active, productive citizen. A year and a half into treatments and people pretty much stop calling, stop reading the website, stop asking you if you need help. Finding I'm pushing people away though, so there's no making me happy. Got to get out of this downward spiral...
Amanda and Em are in that making and re-making their Christmas list mode. They're excited. We have to get an artificial tree this year because the standing water needed for a real one could become a reservoir for contamination:( Last week between getting excited about the upcomiing holiday and because of the SNOW, the girls were playing, singing and doing alot of dancing to Christmas music. I love watching them enjoy each other. I was so pathetic watching Amanda play in the snow with her friends -- tears streaming down my face. This cancer stuff makes you see life soooooo diffrently.
Hoping I can keep it together for the rest of the holiday season. Amanda's return to school is right around the corner. Hoping normalcy is too.
Wednesday, November 13, 2002 at 01:09 PM (CST)
Hello everyone.
We've reached that day 200 mark and Amanda is still ok. The last couple weeks though have presented more than a few hand wringing, buckets of tears days. It was this time 2 yrs ago Amanda 1st displayed symptoms of leukemia (very sleepy -- crawling to the couch, mouth sores, leg pain, pale) and it was around this time last year she relapsed. Now here we are 1 year after relapse and she's tired more than usuall, the mouth sores are back so was leg pain, nose bleeds, nausea. I've been out of my mind. She's ok though. Clinic visits and bloodwork ok. Counts great actually. Mouth sores turned out to be thrush and the other symptoms -- Dr. Hagstrom attributed them mostly to her being off her night time IV fluids.
We were hoping the get her CVL removed. It was with that in mind that her fluids were stopped and certain meds were changed to pills. She was on her own having to drink larger amounts of fluids during the day. She wasn't able to. Her kidney function test wasn't good. Dr H restarted fluids last week mid-week and she perked right up. Whew!! Her CVL won't be removed any time soon.
Not alot of activity has taken place since our last update. Amanda enjoyed Halloween -- she was Tinkerbell (she looks like a pixie anyway) and Emily was a Gothic Witch (a beautiful Gothic Witch). Amanda and Emily have started a bit of a tradition of trick-or-treating for the inpatient oncology kids. They carry (or Mom or Dad carries) a separate trick-or-treat bag marked for cancer kids. While their dad walked them through a couple neighborhoods, I also had a 'candy for cancer kids' bag by my front door that children filled taking from their own loot! It was great watching children reaching in their own candy placing handfulls in the bag marked for the kids who couldn't be out that night. They felt good too you could see. Most in the neighboorhood know about Amanda and her plight so they knew their donations were going to a good place. The following morning, there were two other large bags of leftover candy a couple unknown parents placed by our back door after they heard what were doing. Last year and this they were able to bag up into individual zip lock bags, probably close to 20 or more lbs of candy. I took her to CCMC the next day and the kids all appreciated it -- especially the older ones! This is something I'll encourage her to do every year.
Em has been doing better at school. My thoughts were on removing her from honors coarses placing her down into the mainstream but after a few calls to her teachers and a long meeting with Em, her guidance counsler & I, we formulated a plan. Special note re Em's science class; they are studying cells and after her teacher & I talked about Em's struggle with all this cancer stuff, we thought about how well the study of cell growth fits in with her sister's issues. Here's ANOTHER example of how great the CCMC hospital and staff is -- I placed a call to our favorite oncology nurse Tania who agreed to come into Em's 7th grade science class to talk about cells! She and Em will put together a short discussion on how important cell growth is to cancer patients like her sister. Isn't that great?! Em isn't even a CCMC patient -- she's the sister of a patient. They are so dedicated to families at CCMC. Thank you Tania! I'll let our readers know how it worked out. She would pull through this marking period just fine. Dad surprised us all by taking Em to Florida. She's been out of school for a week. Just learned Dad extended her stay. She's having a great time. Best laid plans....
While Em was away, guess where Amanda went? You guessed it -- GRAMDMASHOUSE. So glad she has a special far away feel good place to go. Its a built in adventure for the girls my mom and NJ family are always good about. So glad my girls are good girls. Makes those Osterby girls invasions happy times for everybody.
Well, there you have it. Another week in the life of a cancer family. We'll all get through this. It's just so hard sometimes.
Thanks for supporting us. Dr. H. hang in there. We love you. Laura S. - we love you too. Stay tough.
Love, Mom, Em & Mand
P.S. Click on the link below to check out Amanda's new Smile Quilt.
Wednesday, October 23, 2002 at 06:23 PM (CDT)
Amanda continues to do great (all cancer moms are hesitant to say anything too positive..). She has had a good month with no transfusions or fevers or anything remarkable -- except that she's pretty remarkable just being Amanda. Her counts are good and her weight is finally over that 60lb mark so we're happy about that too.
Let's see, she's had yet another Grandmashouse visit -- this time she took mom and her sister. It was a nice chance to tank up on good old family times. Amanda was able to go to her cousin's 1st birthday while in NJ, staying outside most of the time (sort of). She had to come in because the weather wasn't that great. She was fine. There were about 10 people there (mom was a nut). Glad to return my 2 little knuckleheads home to our own environment!
She's had an extraspecial lunch guest come to the house TWICE! Very exciting.
She received the ok after the last few clinic visits to go into stores during off times with a mask. She's been in (Dr H I hope you're not reading this...) CVS, Blockbuster, a Beauty Supply store, Party City ( I guess I should stop). She's real good about wearing a mask. It bothers her but not enough to keep her from shopping (some things are mre important than others). It bothers her when other kids stare. The adults are actually worse but she doesn't mind staring back at them.
Amanda was able to sleep over a friends house! Not just any friend but another cancer (excuse me -- excancer) girl friend! Her mom was a nervous wreck about having Amanda there. I had to assure her everything was fine and that Amanda wouldn't be permitted if it wasn't (she's a nervous Nell anyway like me -- can't blame us).
What else -- she survived her sister's birthday party. Em only had a couple other girls to lunch at Harbor Park -- outside on the deck so Mand could be there too. We all went in a Rolls Royce Limo! It was fun. This year's goody bags were diffrent -- (12 year olds) eye shadow instead of candy and lip color instead of a toy, etc. My babys are growing up! That's the object of the game isn't it?....
I'm a bit worried about Em. School has always been pretty effortless for her thankfully since she's sufferred so these past 20 months. Now she's slipping but we'll be ok. New proceedures are in place. I didn't rant and rave as I might have in the past (I'm just back from conferances...). I left it up to her to take advantage of the time left this semister to concentrate, show me her planner every day and go over homework. I admit to slacking off re this. My 7th grader still needs an encouraging push. She's distracted. So am I.
I think I'm tired and rambling at this point but one final note -- our Amanda was actually in a race (!) last Sunday. Wait a minute --- lets think about this -- this kid was in a near fatal state 6 months ago...
Yup -- Amanda ran a mile ralay race!!! It was a four person team each running 1/4 mile. We love Dr. Hagstrom (I say that in every journal entry). We asked Dr. H if this was something Amanda could do and when he started asking for directions to the event -- we guessed that meant yes. He was there and talk about a nervous nell -- I thought I was bad. She was fine -- just winded. Have I told you we love Dr. H?
Our next big event is the removal of Amanda's central line (her 3rd). Maybe @ day 200 (we're at 182). Looking forward to that, keeping everyone healthy and looking forward to the holidays. It'll be great!
Please continue to keep her and Em in your thoughts and prayers. Pray for our friend Laura and for all oncology kids.
Peace
Monday, September 30, 2002 at 07:06 PM (CDT)
Dear Friends:
It's almost October and Amanda is almost 6 months out of transplant -- my how time creeps! It seems as if time is flying at the same time we know we have a long way to go.
Amanda is still ok so far. We went to Boston last Wed and they are very pleased with her progress. We went with a wish list and, much to our dismay, Amanda was granted just about all her wishes with the exception of getting her central line removed (maybe next month) and our wanting to go to Boston only every other month -- not going to happen just yet. Visits there still every month. She wanted to be able to spend the night at her friend's who is also recovering from cancer treatments - Chelsea and was told 'yes' at which time Mand showed her excitement with some sort of squeaky-laughy-jumpy dance. She and Chelsea have become kind of sole mates. They both grew up fast this last year and are on thier own, same level. Chelsea's family is wonderful and the girls can list maybe 30 things they have in common.
She can go shopping in individual stores soon (ie not inside shopping malls)and she will even be able to attend a special church service (but won't be able to stay) sometime in November. Her sister's birthday limosine ride is a go too but she will have to ride with windows open and with a mask. All this of coarse subject to Dr. Hagstrom's ok and we see him tomorrow.
Amanda just returned from another Grandamashouse visit and had a really good time helping Grandama watch baby Brianna and enjoying Brianna's Mom, Dad (her aunt Lillian and Uncle David), and her cousin Linda from Pennsylvania as well as Linda's Aunt (my sister) Donna. She played with her aunt & uncles's puppies and now Ginger is her favorite. Thank you Lillian and David for the shopping! Lillian and David are so generous to her (and all their nieces and nephews) and provided Amanda with several new outfits including yoga pants (?). Amanda loved it! Thanks.
Her schooling is going great. We had a nice visit today
from her teacher Mrs. Zembko who filled her in on what's happening in class and told her how much she is missed at Ivy Drive Elementary. Mrs. Z said the class clapped when they heard of Amanda's high math test scores (how nice!).
We counted our visit with her teacher as Amanda's parent teacher conference. I review her progress daily too with her tutor Ms. Byrnes. She's doing great.
Amanda is proud of her dancing too. Dance class is 9am ea Wed and she got to show her teachers (Mrs. Z and Ms. B) and Dr. H (!)her new dance steps. Her Dr made a house call! Since it was 2 weeks in between CCMC clinic visits and because we're not that far away (30 min), Dr H came to Amanda's for lunch (and because he's just the greatest!)! Is he YOUR absolute favorite person yet? He's "...just plain great!"
Emily is good and happy too. Very excited about her birthday and very happy to stay close to home these days (can't convice her to participate in many school activities -- can't blame her for just liking to be home comfortable, warm and happy with her sissy). Soccer will come in spring as will the resumption of Sunday School, back to mom going to work and hoping Amanda will be back at school (February) and with that, all the excitement a 'normal' schedule brings.
Amanda and her family are so saddened by our friend Michelle's passing. She lost her battle with cancer Sept. 25, 2002. She fought so hard. She was seven. She will live forever in our hearts. We will miss her.
Love,
Amanda's Mom
Wednesday, September 18, 2002 at 09:40 PM (CDT)
Hello and thank you for caring. Amanda is doing fine. We see Dr. H now only one time a week :( Mand is very ok with less hospital visits - me, I already sent Dr. H an email saying I'm being weaned too quickly! There are no words to describe how important he is to us and what a wonderful human being he is. I'm thinking most 2J families know what I'm feeling in part. Part of this is literally weaning myself from the frequent talks,guidance and comfort he supplies and part of this is the fear. Amanda is a relapsed AML patient now in remission after transplant and stepping back and away from her medical evaluations... kind of scarey.
It's all good. Amanda is doing great with school (yes we were granted 10 hrs tutoring/week -- up from 5) so she has 3 sometimes 4 hour tutoring sessions. Lots of homework too. She doesn't mind. She loves her tutor and says she makes everything fun. Her dance lessons started! The Family Center of Bristol helped us get in touch with one of Amanda old dance teachers who comes to the house! Amanda so looks forward to her Wed morning work-out. She's learning hip-hop and they both work up a sweat!
Amanda got the thumbs up to go (all by herself) to Grandma's house! She has been waiting since she last left there 3/17 talking about going back at least 3-4 times a week FOR THE PAST FIVE MONTHS!! I think her Dr said ok because she wore him out! She went for 2 & 1/2 days -- a short visit. We wanted to make sure she was ok before any longer stays were considered . She did fine. She saw her baby cousin Brianna (soooooooooooo cute) and of coarse Grandma! Grandma's House itself Amanda loves too. She saw some of her aunts, uncles and cousins as well. She was very careful. Oh, she saw the puppies. She adores the puppies.
She came back Sat just in time for me to rush her to her cousin's wedding! Actually -- she could only see them once they came outside so she got there just in time. The bride & groom were still inside the church -- on their way out and they spotted Miss Amanda standing there all by herself (everyone was still inside)waiting. They were so happy to see her. Emily went with her dad to the reception. She had a great time.
Amanda already has another trip to Grandma's set for 9/27-29> Just her again (Em got to stay at Grandma's this summer for almost 2 weeks -- Manda's stay will have to be in pieces). She always has something to look forward to.
Her meds have been cut back even more. We go to Boston now just once a month & our next trip is next Wed. Her next big deal will be the removal of her central line so we hope that will be soon. Her cyclosporin is being weaned so the end of that will be welcomed -- it has not-so-great side effects. She's on steroids and a few other meds but Amanda is still a trooper. She hasn't needed any blood transfusions for a while. We're in that wait-and-see mode.
Emily is doing great. She loves school -- had a couple bumpy grades but she'll be fine. I'm sure she's distracted with all thats happened -- that combined with just being in 7th grade (UUGH -- who would ever want to relive that year??). She's so beautiful (both my girls are so beautiful -- my family is sick of me saying it...) and so smart. She'll have a good year. She's planning for her 12th birthday party. I always go overboard. We have fun. Send us your ideas -- not an easy thing considering we want to include Amanda and she cannot go inside places. We'll think of something -- we always do.
We have a family therapist that comes to the house once a week to help us deal with all this and the difficulties being under house arrest presents. Helen we love you. I haven't given up trying to get Em & I to her Kid Space group for families dealing with cancer. I drag her there but just like most kids -- she's fine once she's there. It's beneficial -- esp for families that are in that in between state where you are not an in-patient and do not have hospital staff and like us don't want that dangling in the breeze feeling. There is a benefit to feeling 'connected' to other families like us.
It's taken us over 3 months but we've finally established some structure. Amanda and Em like to be on a schedule -- every kid likes a routine. I am finally able to calm down and get to work. Thank God for my employer Trumbull Services (part of The Hartford Ins Co) my management team in particular. Their tolerance and support has prevented me from going out of my mind. It is difficult and often impossible for parents to keep their jobs during cancer treatments. They are humaniterians. Its with tears and deepest gratitude that I go forward so committed. Thank you.
Well -- that's it for now (Lina you inspired me). We're just looking forward to Amanda's trip as well as another one to NJ Columbus Day weekend with both girls & I for baby Brianna's 1st birthday. We are excited too about Em's b-day, the upcoming holidays and especially Christmas when Uncle Glenn & Aunt Linda (or as Amanda calls them Aunt Glenn & Uncle Linda) will be home from Colorado this year! The past 2 Chritsmases (sp?) were pretty bad trauma-wise so we'll be ready to celebrate & be together.
Lots to look forward to.
Love and thanks to so many people,
Judy
P.S. Look for new pictures coming soon...
Tuesday, August 06, 2002 at 02:50 PM (CDT) Update Complete: Aug. 27, 2002
I apologize for letting so much time go without posting an entry on Amanda's progress. It's a good sign though -- she's going great and enjoying her summer at home this year. Medically, she's doing great. She's needed and received a couple blood transfusions over the past 2 months but her doctos tells me not to worry. Her counts are good. Clinic visits are less frequent and her meds have decreased -- even her cyclosporin -- the medicine she takes to prevent graft vs. host disease. Besides that, she just takes nausea and belly meds and a magnesium suppliment. She's hooked up to fluids at night to keep her kidneys functioning properly -- something the cyclosporin impeeds. A big change from the past few months when at times she was taking 22 pills a day!
Emotionally our Amanda is still on top of the world. Sure she gets sad and even crys at times due to her visitor and visiting restrictions but she lives in a neighborhood where she has lots of fun outside with the 5 or 6 other friends she plays with. Her sister Emily is her best friend and playmate. They truly love each other and will tell each other so!
Her new tutor is a wonderful woman who has re-instilled her genuine thurst for knowledge. There was a worry that this straight 'A' student had lost her zest for school work. She didn't. It is simply impossible to maintain any kind of regular learning progression while undergoing her fight-for-life struggle. It wasn't important. Hospital tutors became no more than a 20 minute distration each day. More than that, many days, she couldn't endure in fact many days the tutor was sent away as all Mand could do was sleep and get up only to go to the bathroom. She couldn't stay awake or couldn't tollerate any kind of activity -- nausea, vomiting, sleepiness due to meds was her day's activity. Imagine, I had to put up a fight for some summer instruction to ready her for 5th grade! Thankful that she moved up a grade but fearful she wasn't ready -- and she wasn't! Amanda and her tutor are having fun with school again and they have a progressive rhythum going. What's troubling is children like Amanda who must be home tutored are only entitled to 5 hours schooling a week!!! That's 1 hour a day!!! How do you tackle math, language arts, soc studies, science (I want her to have music and art too!) each day in one hour??? I will make a special plea for at least 10/wk.
Amanda got to go swimming!! Her oncologist allowed her to dive in her Aunt Debbie's pool for a 10 min dunk. She was thrilled!!! She was plucked out and had an immediate CVL dressing change. If she misses any summer activity its SWIMMIMG. Shopping is another of her favorite things she is barred from -- of coarse there's cataloge shopping. She went school shopping by catalog. Its fun to see her when the delivery truck pulls up and hands her her box! You don't get that feeling of glee at the mall! she looks forward to the day her doctor gives her the ok to go to her favorite place ing the world -- GRANDMA's. Seems she's always anticipating some big event. This helps keeps her excited about life. That's her personality though -- some kids may get blue or discouraged about living through cancer treatments and restrictions-- not Mand! She knows better days are coming.
Well, that's it for now. This update was started Aug. 6th but completed only today (Aug 27) due to computer issues. Since then, our new pc has been installed (with cable modem!!) so if I can elbow my way in past the girls, updates should come more frequently (we'll see...).
Thank you for checking in on her. Please continue all those good thoughts and prayers. Love,Mom
Tuesday, July 09, 2002 at 09:39 PM (CDT)
Amanda is still home and doing well.
Sunday, June 23, 2002 at 06:03 PM (CDT)
Amanda is home.
Those words used to mean something much more simple... Her being home is huge. Many of the children in the bone marrow unit that were there when we arrived are still there. It seems she had a good match. She was discharged from the hospital at day 33, and she was home by day 42 after transplant which is about as 'fast track' as it gets! Today is day 60. So far there's no sign of graft vs. host disease (GVHD). After day 100, we can exhale some but for now she can be outside with a few other healthy kids as long as she remains at least 10 feet from them at all times. She can play or visit at closer range with no more than 2 healthy others at a time (outside) with lots of good hand washing. Only her tutor, mom, dad, sister and grandparents are allowed in her house until we reach the day 100 mark, then some of the rules may be adjusted but that's a long way off. She cannot go anywhere except home and the clinic. For now, we all have to tough it out for Amanda. She is home now because we made a commitment to keep her safe. She and her sister are not suffering anything except the normal side effects of life with three girls under one roof. She doesn't mind swapping life in Boston for a life at home with restrictions.
To anyone except long term illness families, its impossible to know how wonderful it felt to be back at the clinic at CCMC. It didn't really feel like we were home until we were back at the clinic, with Dr. Hagstrom popping in Amanda's room hearing his familiar "how's it goin?" greeting. Hospital life is still central to our lives and will continue to be for many months. It's a whole diffrent way of thinking. The support and care Amanda has gotten from the hospital staff and the many other cancer families continues to be exceptional here in Connecticut. Some of the greatest comfort for us has come from families needing comfort themselves. Amanda is a very lucky little girl. Some of our CCMC children are not so lucky. The love that pours out of these children doesn't stop no matter how sick they are. Amanda has started wanting to take on the role of helper, explainer to some of the other children. A new cancer family Amanda was able to trade secrets with is a friend of hers -- a classmate. Amanda enjoyed sharing her stories of hospital survival and intregue with her. The families need each other and we look forward to being able to give back some of what we have thrived on.
Amanda got the go-ahead to leave Boston at her June 5th Dana-Farber visit. We thought of our friend Aaron Z when we were discussing whether or not to go back to the Ronald McDonald House, have dinner, pack and leave in the morning when we stopped and thought 'What would Aaron do?'. She was packed and headed home 3 hrs after her doctor's appt (A.Z. -- you would have been proud).
Amanda still has to go to the hospital Mon, Wed and Fri with the Wed visit being to the Boston clinic (Dana-Farber). These all day clinic visits make it hard to accomplish anything else but we'll have to work hard and focus. Mom needs to get back to at least a 40 hour work week. Dad is sharing some home coverage and clinic visits. We'll get through this.
Amanda continues to do great. Her medicines are slowly being cut back. So far, she hasn't needed any blood transfusions since transplant which is great but her body and immune system is still very fragile. She naps each day. She's pretty active though.
Her schooling can finally resume. We met her new tutor last week and she seems very nice. An added bonus regarding her tutor is each school lesson ends with a short piano lesson!! Yippie!! Finally!! The piano is getting played! I told Amanda she had to select an art or music activity and another more active sport-type something. Baton seems to be a possibility to satisfy the sport-type something. One of her friends has offerred to teach her in the yard. We'll see.
That's it for now. Thanks to everyone for their love, prayers and caring about our Amanda. Our hope is high.
Thursday, May 30, 2002 at 07:45 AM (CDT)
She's OUT!!!! Doing GREAT!!
Monday afternoon Amanda was discharged from the hospital. She was moved into her apartment at the Ronald McDonald House.
She is enjoying peace and quite. It took a couple days to get settled because she didn't actually get to RMH til after 5pm and had a late dinner with little sleep that first night. Tues & Wed were spent at the Jimmy Fund Clinic at Dana Farber so today we finally are settled and we're looking forward to finding the park nearby for a picnic lunch.
Amanda is doing excellent. Her counts are all great. Her ANC yesterday was 5000 something. While she is still extremly wiped out lying down most of the day at the clinic or on the coach at the apartment, she's getting plenty of excercise too. She received a new skooter and helmit and is zooming up and down the sidewalks around our block. She was so worked up the other night that she was dancing and hopping around to Beauty and the Beast song 'Be Our Guest' when she jumped up and off the coach landing hard on her heel injuring her foot!! She is ok -- probably a bruse. Her doctors didn't feel the need to xray. She limps. I told her she looks like a little old man. This has slowed her down a little but only a little -- we're taking bicycle ride in a few..
The house is a wonderful facility opened in '79 the dream of a cancer parents' group. It's just for children with cancer and their families. The people the Ronald McDonald House allows to visit a post-transplant child are parents, sibilings and grandparents. It's just a few blocks from the hospital and clinic -- a fifteen minute walk. The main house is a large lovely home in a nice neighborhood that has a wide, open poarch wrapping around the front and side. It has 10 bedrooms and 6 studio apartments for children who have just received bone marrow transplants and other common areas. The Carriage House has another 8 studio apartments but is closed for renovations. Our apartment is very nice with a living room with a green couch and green chair with matching drapes. Two green large jar type lamps are on either side of the coach on end tables. There is a full size wall bed and the couch is a sleeper sofa. There's a dinning table in the living area and a small kitchen that's all white -- appliances, cabinets and counter tops. The bathroom is all white too. It looks newly remodeled and its nicely decorated. There's a Kennedy rocking chair. Mom is very guilty of overpacking making the billion moving days a nightmare but Amanda seems to have everything she needs.
Well, we'll probably add to this entry later. Right now, the weather is sunny and mild so she'll take aome pills (that's probably her biggest complaint -- the number of pills she has to take now at 22 a day!). We're off on an adventure...
Later!
Tuesday, May 21, 2002 at 12:31 AM (CDT)
** U P D A T E ** Wed., May 22
Today -- Amanda ran low grade fever. Waiting for cultures. She did not get to leave the hospital today. May be another week....
Amanda is doing great!
She just learned she may get to leave the hospital this Wednesday! Scarey!
She celebrated her 'Break Out Day' last Wednesday with her grandmother and sister present. Her blood counts have been on the rise steadily so she can leave her room! She can only go into a small corridor but psychologically its a big step. Her sister Em helped with the Break Out Day celebrations by decorating posters and taking pictures (Dr. H don't even ask...). Amanda of coarse picked out a special outfit for the day. No 'Rocky' theme for the event was played -- instead, Amanda played her favorite from The Jackson Five -- their 'ABC'. She loves their origional album (did I say ALBUM?). It was fun. She bashed through her barracaded door and the hospital staff cheered! She, like every other Break Out Day patient, was back in her room in about 10 min asleep. OK!
Amanda has improved steadily but she is dealing with emotional issues. Cancer stinks no matter where you are or how well you do. She thinks about the others at CCMC. She's far from home and misses her dad alot. Her Aunt Bea, Uncle Steve and dad will visit tomorrow. Dad is here on weekends too but its not like her other hospital admissions where she was able to see her immediate family every day. Each day she gets better and her activity level is better too. She'll be ok. She continues to kick butt at her favorite card game 'Spit'. The 'victums' list from last week includes Tania, Marilisa and Liette. She can't be beat.
She's had fun handing out socks to her favorite nurses. Mom bought a bunch (ok a ton) of socks and each day she would reach in a bag and pick out a new pair for herself them select the day's outfit around her new socks. She would do the same for her nurses -- they had to close their eyes and reach in the sock bag and pick out a pair. The next day we'd see her nurse from the day before modeling her socks and the outfit built around them. Socks. Who 'da thunk... Amanda's uncle Glenn followed with a big batch of belts! Her & her uncle have been teasing each other about who has the prettiest belt. He heard about the sock thing and added his own zaney twist mailing her about 10 belts. Amanda has a nuttey family.
With her pending release comes some mixed feelings. Feelings of joy of coarse just getting her to this point but some anxiety over her new life for the next year. Many restrictions will follow her -- some not seeming to make sence -- ex her being able to have visitors here/now but not once she's home. Even though her white blood cell count is good or increased, she will remain at high risk for infection for many reasons. Her white cells and immune system are new and cannot fight infection very well. It may not return to normal for two years. Patients like Amanda who received bone marrow from an unrelated donor are a higher risk because she takes medications to prevent graft versus host disease by supressing the immune system. The medications themselves can increase the risk of infection. She will need to re-do all her immunizations (after about a year).
'Home' will be a diffrent place. Rules on people contact, housekeeping, food preparation, what she can drink, etc., etc. will be strictly followed. Once home, she can have no visitors unless its outdoors. Clinic visits will be a regular occurance but we hope that since there is a high confidence level between her doctors at Dana-Farber and her oncology group at CCMC, we hope to be back in Connecticut sooner than we thought. We'll see. We want to be home even if it means change.
Thank you everybody -- our family and friends, our much loved Dr. H (our security blanket) who have all hung in there with us. She is better because of you.
Monday, May 13, 2002 at 08:42 PM (CDT)
Great news!!
Amanda's body has started growing new cells from the donor cells!!
We are sooooo happy! This is what we have been hoping to see!! New cells are developing and her little body is starting to heal. The sores in her mouth and throat are getting better. For those of you who are familiar, you will understand our excitement over Amanda's ANC for today of 510! Yup !! Isn't that great? A few more consecutive days of this number being that high and she may be able to 'Break Out'!
Here at Children's Hospital Boston, they celebrate 'Break-Out Day' in a big way! It's a celebration for kids who can finally leave the confines of their hospital room after their blood counts recover enough. We've never actually been witness to such an event, but we're told that once her door is opened and she can really leave her room, the opening is actually taped up with paper type streamers she will BURST THROUGH (I envision a 'Rocky' kind of background music goin on)! Lot's of picture taking and lots of just being glad she can get the *%@*!#$ (heck) out of her room!
She can finally start to meet new people incl. other kids and restart her social side within the safe, protective hospital setting (she doesn't realize it yet, but she's pretty good at being social -- ok, maybe she DOES realize it!). This will go far to nourish her. We're not there yet, but there's an excitement in the air!
Her grandmother and SISTER come tomorrow for 2 days! It's just what the doctor ordered (Dr. H, I'm blaiming you for this...!). "Excellent!".
Amanda has been so tired and so sad. Emily misses her sister terribly. They've both been missing each other. Em & Grandma Lois will perk up our Amanda Sleepy-Head. She does get very tired very easily (Amanda that is -- not Grandma) and must rest ALOT! We'll have to tell Lois to keep it in low gear (she's tough!).
Anyway, its all good. She will have to start eating and drinking on her own and will still have another couple weeks as an inpatient if things go ok. We're optomistic!
Keep the prayers and good thoughts coming. It's working!!!!
Tuesday, May 07, 2002 at 08:49 PM (CDT)
Finally!! Our internet connection has been restored!! We sorely missed our connection to the 'outside world'! Many apologies to our friends and family who have relied on this tool as a means to keep updated on Amanda. We are back and plan to resume regular updates.
Amanda medically is good. There are no issues! She is at day +13 after transplant which means over the next couple weeks, we may now begin to look for signs of engraftment -- signs that her donor cells have successfully travelled through the bloodstream, into the bone marrow spaces where stem sells grow, signs new cells will divide and begin to produce new red blood cells, white blood cells and platelets. She is still in a vulnerable state where her old marrow has been destroyed and the new marrow has yet to start producing mature cells. From transplant day on, she has been at greatest risk of infection and bleeding. So far, she has had a couple low grade fevers but that was more than six days ago and her cultures have come back negative. The anti-biotics she was immediately placed on (that she will remain on for the next couple months), have done their job at fighting whatever potential infection may have been brewing.
Some of Amanda's school mates have referred to the transplant as 'surgery' implying she would be on an operating table requiring stitches, etc. The transplant was a painless proceedure that took place in her hospital bed -- similar to the many blood transfusions she gets where the cells were dripped into a tube that has been placed in her chest. Mom woke her up for the arrival of the cells as promised but she soon fell back asleep feeling nothing but the sleepy medicine she was given.
The white blood cells will generate first followed by red blood cells and platelets. The white cells may be delayed as they may immediately get 'used up' going to places like her mouth throat and gut where she continues to suffer the painful, rawness that prevent her from speaking and swallowing. Because of this, it may be hard to see signs white cells in her daily blood counts.
Aside from all this -- Amanda is blue --she is very very sad. She wants to be out of bed. She wants to be back at school with her friends and she is tired of taking medicine and being alone. It is difficult these days to get her to smile. She wants to go home. She understands the plan is a few more weeks in the hospital, followed by a 3 week or so stay at the local Ronald McDonald house. Its a beautiful home just down the street for families of children with long term life threatening illinesses that live too far away to reasonably make daily trips to the clinic or hospital. Emily and mom spent the night a couple weeks ago and it was very nice. Amanda though, will get her own apartment so that she will not be around others in the main house. She will need to remain away from people for many months while her immune system recovers. This may take 6 months to a year. After the Ronald McDonald house, its back home making a couple trips each week in to Boston's Dana-Farber Cancer Institute clinic mixed with a couple trips to Conn Children's Medical Center clinic where they will share her aftercare. Eventually, only trips to CCMC will be necessary. All this is subject to change depending on her condition. She will need to be away from people for many months but she will be able to play outside in nice weather. Even though she understands all this -- it doesn't make it any easier now. At the same time she is reminded that things will get better, she is also warned that things could also get worse. Anyone who knows Amanda knows she is very bright. Honesty is important. Great care is taken to ensure she is not scared. She's still not afraid -- just sick and tired of being sick and tired.
Once she gets home, her mom and dad will need to get creative in their attempts to keep her happy and engaged. Good old fashioned Sunday drives and perhaps ideas like private sewing lessons or something else that interest her will need to be discovered and set up.
She and her sister look forward to redecorating their own bedrooms! The internet will be her link to the shopping malls though we are in need of any cataloges we can get our hands on (Speigel, Popular Club, JC Penny, etc.). Shopping over the internet has its advantages but the photos aren't the greatest. Emily may have already found her dream bed set at Linens n' Things! They both have this to look forward to. Once Amanda goes home, she and her sister will live in Mom's apartment that's being outfitted with new carpeting and a fresh coat of paint. It will be a nice fresh start.
She'll get through this. Your prayers and good thoughts are with her. Thank you for the support and comfort your notes provide. She's tough but the times seem to be getting tougher.
A visitor or two would be very welcomed. Healthy adults, friends or family would be the best medicine at this point remembering to always call ahead. Thank you everybody.
Stay with us...
Friday, April 26, 2002 at 06:25 PM (CDT)
Well... the stem cells arrived (this alone being a huge relief -- fearing any number of missteps along the way...). They're in and she did great. They arrived at the Dana-Farber lab around 11pm and because they were of a diffrent Rh factor, they needed to be manipulated some how and they were ready around 2:30 am Wed 4/24. It took an hour and thankfully it was uneventful. We kept a close watch for the next couple hours and she was fine. The nurses took a picture of the bag of cells for her and we kept the sticker that was on the bag they hung as a souvineer -- it's in her daily bloodcount sheet.
She's ok but not her usuall cheeky self. Lots of vomiting and mouth and throat sores from the chemo and radiation and to her, they feel almost like burns. Her nurses and doctors are very compassionate and are trying their best to make her comfortable. Its a tough time and frankly we don't expect improvment, rather there will be tougher days ahead. She's receiving immuno-suppressant chemo making these next few weeks the really vunerable times. We hope she is able to move through this smoothly though we're warned it's not likely.
In 2 weeks or so from now we hope to see a glimmer of a white cell count. This will be our sign engraftment is taking place. Once this happens, the rest of her counts should follow and grow.
Please continue to keep her in your prayers and thank you so much for your notes and emails and for checking the website.
More updates to come.
Monday April 22, 2002 6:30am
* (Another)IMPORTANT UPDATE:
This is a change from the below listed update from this morning -- Amanda's transplant will occur TOMORROW around midnight.
Amanda's new bone marrow transplant date is today: Monday April 22. Please join all of her loved ones in wishing her the best with this important step in her treatment.
For more news on her arrival and first days in Boston, read mom's last update (Saturday April 20) by clicking on the "look at past journal entries" link below.
Saturday, April 20, 2002 at 09:22 AM (CDT)
Amanda arrived at Children's Hospital Boston Monday around noon and is arleady the floor sweetheart. She likes her new nurses (don't worry Tania & Marilisa and all her other CCMC girls -- you're still her favorites). She completed her radiation Friday and is suffering nausea and some of the other not serious but aggravating side effects -- all contollable with medicine.
She celebtared her birthday Wednesday (10 years old!!) and was thrilled to be able to go outside that day and feel the heat of that 95 degree day (don't worry Dr. H & Dr. Lehman-- I kept her in the shade..). She woke up to some gifts and balloons and the nurses arranged to have her name appear on their closed circut TV station that lists each child's name that's having a birthday. Her nurses also gave her a cake and a present. She had a great day. Thursday wasn't so great -- more nausea and vomiting and what was worse was it was the start of her having to remain indoors. She was very blue for a few hours after but... she cheered up when Dr. Hagstrom came for a visit!! This was short lived though because 20 min or so into his visit she fell asleep!! Dr. H and mom had a nice chat.
The bone marrow transplant wing is being renovated and Friday we had to move from 6 west to 9 west. Thursday mom and another bone marrow sister Sam planted an idea in the hospital staff's heads and they said yes!! to allowing the kids to pretty much trash the place!! They allowed the kids (parents too) to paint and scribble on the hallway walls and rooms to their heart's content! The next morning you could hear whenever another nurse or staff arrived to work -- each person let out a "Oh, my God!" as they canvassed the halls with their eyes bugged out and mouths hung open . It was great! I think the parents did more coloring and scribbling than the kids! It was quite theraputic and looked so colorful and bright. It looked like a children's hospital!
Her new room # is 901 (we're right next to Eric Bertolini -- another CCMC patient!). It's much bigger. It is intended to house 2 patients per room which of course they will not do for bone marrow transplant children so Mom or Dad has the other bed (thank God)!! Two TV's w/ separate remote controlls make Amanda and her parents happy as well! Her new room is much larger and happier with a cute, happy colored boarder and her kazillion balloons really brighten up the place.
Two days of chemo start today and end Sun. She'll get a day of rest then Tuesday is the big day. She will receive the donor's bone marrow transplant Tuesday.
God be with her and her lifesaving, annonimous donor.
(Amanda's ANC today is 139.)
Saturday, April 13, 2002 at 03:11 PM (CDT)
Ok........ the new date for Amanda's admission to Boston Children's is April 15th.
Friday, Amanda had a lumbar puncture and clinic visit with her CT oncologist Dr. Hagstrom who gave her some last minute coaching and a clean bill of health. We are so glad Amanda is in his care. He is one of a kind.
She will leave Ct tomorrow morning with her mother, sister, her NJ Grandmother, her CO uncle Glenn and her 2 NJ uncles David and Andy (Andy -- Boston Marathon bib #1603 also a Leukemia and Lymphoma Team in Training coach as well as Sussex County Bear's Open Men's Running Team member -- GO ANDY!!). She will have a chance to do some sight seeing before checking into her Wyndham Hotel room Sun.(located 1.4 mi from the marathon finish!).
Monday it's off to the hospital (for Amanda and her mom) and off to the race for the others.
I will update this journal with her hosp room number and address as well as future updates on her condition.
WE'RE OFF!!
Tuesday, April 09, 2002 at 12:48 PM (CDT)
Yesterday Amanda and her mom made another trip to Boston Children's Hospital (BCH) to have another MRI and CT scan of her brain.
Amanda's last journal entry mentioned her being all ready then being sent home from BCH where we were to begin the process readying her for the upcoming bone marrow transplant (BMT). As were were on our way to Boston last friday, her Boston oncologist, Boston neurologists and her Conn. oncologist all discussed and were all in agreement that for now, the BMT could not take place. The Boston neurologists saw leisions present on her brain. Not knowing what they were (fungal, bacterial, leukemic or something else) and proceeding with the BMT, could have placed her at extreme risk. The ride home from Boston that day was, to say the least, numbing.
Yesterday BCH sent us home again but this time we are happy to report that being sent home was a good thing. Whatever leisions had been there were gone and she and the few family and friends and her Ct. oncologist Dr. Hagstrom, that knew of this latest plight, let out a collective bucket of tears -- of joy that is. Amanda was facing the possibility of having surgeory on her brain and in typical 'Amanda' fashion, faced this possibility as she has any other scarey scenario -- with courage. Thankfully we instead were sent home to wait for another BMT date.
Amanda has undergone so many tests and proceedures over this past catistrophic year but this time -- this time the fear was almost unbearable. Fear we and every other cancer family lives with and must cope with. So many times we wait for test results that leave you full of fear that the result this time will not go our way. This time it did.
We spent today re-grouping, re-unpacking and (the adults anyway) re-thinking just how special this little girl is. She needs to have the BMT. She will. Later this week we hope to have a new plan in place. If the BMT cannot take place in the next couple weeks, she may need to be re-admitted to Ct Children's for more chemo but that's just one of a few diffrent scenerios.
Thank you for checking in on her. More to follow...
Saturday, April 06, 2002 at 09:31 AM (CST)
Since our last update, Amanda has had quite alot happen. She's had losts of fun in between clinic visits. She's gotten in lots of playtime with her neighborhood buds. She managed to get in a (another) shopping trip with some of her NJ relatives who came in just for that and to take her to lunch. It was so nice of them. We went for another day trip to Boston to meet with more doctors and have some preliminary tests done. She had a sleepover party with 3 of her friends at her sitter Stella's house. And best of all, she even had a surprise birthday party!! Her oncologist gave the ok for her to have a small group of friends present. It took place at a beautiful clubhouse decorated with a 'rainbow' birthday theme. She was SO SURPRISED!!! Afterward, she admitted to thinking she was late for someone elses's party. Then she thought she was in the wrong place! She was with our family friend Lisa who took her and her sister Emily to the movies. After that, Lisa took 'the long way home' telling Amanda something about being lost and into the clubhouse they went to 'ask for directions...'! Valentine the clown was there too. It was a great day.
All these things were planned to occur prior to her April 5th departure to Boston for her bone marrow transplant since afterward, she will be in a sort of total quaranteen for many months. She did it -- she got it all in. She even went ice skating with her oncologist Dr. Hagstrom!! He happened to be at the same rink where Amanda's school has their annual skating party. That was a special treat too!!
Amanda was ready and we took several days packing, getting anxious and talking alot. Friday April 5th came. Amanda planned to go in style (she's ALWAYS 'stylin') and that morning she wore a beautiful tea length pink dress. She was dressed and ready to go when much to her surprise a beautiful shiney black stretch limosine pulled up and it's for her!! Talk about stylin'! She and her sister screamed with excitment!
Once the car was packed and we were finally off, another secret plan was in motion and that was a stop at her school to wave good-bye. When we pulled in, the ENTIRE student body was outside along the sidewalk waving signs and banners! There were even six little girls lined up each holding a poster of a letter of her name. It was so funny -- instead of them holding up the letters that spell out A-M-A-N-D-A, they spelled it backwards: "A-D-N-A-M-A"! They were so cute. The limo pulled up and Amanda got out walking over to her principal Dr. Rosie Vojtek who, with microphone in hand, gave a good luck speach. This was followed by several groups of children who presented her with cards, their posters and a final send off cheer of "Hip-hip Horray"! She drove off to their clapping, waving and plenty of 'thumbs ups' (with mommy of coarse crying in the back seat).
Next stop was the Children's Hospital where some of her nurses, her Dr. H, some PCA's and other hospital staff came to greater her. Oragne juice, muffins, doughnuts and cookies in hand, more hugs and kisses and she was off!
What happend next is still a bit of a blur. We were sent back home. Another look at her latest MRI that morning (as we were en route to the hospital) revealed possible pending issues in her brain that need to be looked at further. The transplant has to be delayed. We will return for another MRI 4/8. What happens next depends on those findings.
More updates to follow.
Sunday, March 17, 2002 at 11:49 AM (CST)
It's a Happy St. Patrick's Day at Grandma's house! Amanda, her sister & mom ventured off to NJ for a last visit with her NJ & PA families before leaving for Boston Children's.
Her detparture date for Boston has been moved up to 04/05. She will spend her first week there receiving pre-transplant chemo and total body radiation. Her new transplant date may be 04/12.
In the meantinme, she returns home to spend the next two weeks getting more medical proceedures completed and trying to catch up on her school work.
She's happy to be out of the hospital even though we're back there most days for tests and medicines.
Thank you for visiting her journal site and may the "Luck o'the Irish" be with us all!
Sunday, March 10, 2002 at 04:10 PM (CST)
We have just learned that there is a perfect bone marrow donor match for Amanda!
Amanda will go home from the hospital this Wed. for a short while then head for Boston Children's Hospital 3/29. It seems things are moving very fast now.
She is still recovering from a very difficult last 3 weeks of chemo side effects.
Amanda's spirits are very high though I'm sure she is anxious. We will keep this journal posted with frequent updates on her progress.
Thank you for the TREMENDOUS outpouring of support, care and love from her family, her doctor, the hospital staff and from her church, neighborhood and school communities and from our countless other support givers. She knows she is loved!
Click here to go back to the main page.
----End of History----