History

Journal History

Saturday, January 3, 2004 1:13 PM CST

Whitney has been doing terrific these last few months!! We were even able to take a family vacation to Florida in November thanks to 16 different organizations that were generous enough to help with the expenses. We enjoyed 2 fun-filled weeks in the sun and Whitney went swimming just about every day! She had a wonderful time. We even got to ride in a limosine to and from Manchester airport thanks to North Country Auto Rentals. We arrived home the weekend before Thanksgiving and enjoyed a wonderful day of Thanks with my mom and stepdad and aunts and uncles.

The first week of December, Whitney did another round of chemo. It had been 8 weeks since her last one because I wanted her to be in good spirits for her trip to Florida and not end up in the hospital during our vacation. Scans done the following week in December showed NO PROGRESSION of the cancer. So I guess it didn't hurt her too much by postponing her chemo. Actually, we would have had to postpone it anyway had we been home because her platelets took a long time to reach the 100,000 mark that the oncologist likes to have before continuing another round of chemo. Because of this, we have been in contact with Philadelphia and we are getting ready to participate in the MIBG clinical trial that they offer there. Whitney's MIBG scan done last week came back positive so she is in fact eligible for this particular study. Our oncologist says that it could take 6 to 8 weeks to get Whitney to Philly, so they are deciding this week what we will do in the meantime.

As for our Christmas, this year it was a bittersweet one. I was so happy and blessed to have Whitney with us and feeling great, but my oldest daughter was dealing with alot of anger and depression and had been admitted into a retreat for observation and to help her control those behaviors. She was able to come home for the day on a special pass that our insurance company okayed and we had a very special and memorable day. Whitney's and Amanda's dad rode with me that evening to take Amanda back to the hospital and she was released this past Tuesday.

I will try and keep you updated as our trip to Philadelphia gets closer. Thanks to all of you for your love, prayers and support.

Happy New Year to you all!!
Karen

Saturday, October 4, 2003 5:36 PM CDT

Wow, it sure has been a long time since I last updated everyone on Whitney's progress!
She's doing great! She's gone to a birthday party and plans on dancing all night with her Poppa (little does he know). This week was a hectic one for Whitney and me. We went to DHMC for blood work on Monday and then Tues., Wed., and Thurs. we went to Boston for her stem cell harvest that we will possibly use during a clinical trial in Philadelphia. What a long trip!! We started each morning quite early, only to find ourselves driving into Boston with everyone else between 8am and 9:30am, spending a good 7 hours in the hospital with Whitney barely being able to move because she was hooked up to a machine and then leaving between 4:30 and 5:30, again with everyone else in the city! I have certainly had enough city driving for a while. It doesn't usually bother me, but to have to do it 3 days in a row during the busiest possible times of the day gets a little frustrating. Well at least we were able to get a collection. The doctors were worried because Whitney's bone marrow has been hit so hard and for such a long time with chemotherapy. They weren't sure if we'd get a decent collection or not. Well they wanted between 2.5 and 5 million stem cells and we harvested 4.6, so she was well within that range, even though it took us 3 days to get there. At least it's over now!!
So Whitney was able to make it to school one day this week, Friday and next week she'll only make it on Monday because it is our chemo week. At least at Dartmouth, Whitney's tutor comes to work with her on Tues, Wed and Thurs. She doesn't bother to come on Fridays because usually by the end of her chemo week, Whitney's feeling kind of tired and worn out.

Hey, I wanted to let everyone know about this GREAT fundraiser that a father (Mark Dungan) on my online Neuroblastoma support group has come up with. It is called:

LUNCH FOR LIFE

This has become a great effort that many of my fellow NB parents, as well as myself have started across the country. The idea behind Lunch For Life is for people to give up a day's lunch - about $5.00 and donate it to Neuroblastoma research, then they ask 5 of their friends to make the same commitment. This idea is much like the movie "Pay It Forward", after you have told 5 friends about this fundraiser, then they tell 5 friends, and then all of them tell 5 more friends and so on and so on...
The goal is to raise $10 million in 10 days. I know this seems astronomical, but if we keep the chain going, then perhaps it can be done!! You can watch our continued progress on Mark's daughter's website: www.sydneydungan.com

All donations go to the Children's Neuroblastoma Cancer Foundation. The founder's name is Pat Tallungan, who lost her son Nick to Neuroblastoma and is also a member of my support group. Funds go directly into research, education and support to families who are fighting this war.

Please make your donation by check to:
CNCF
PO Box 6635
Bloomingdale, IL 60108

or directly on the Children's Neuroblastoma Cancer Foundation website:
www.cncf-childcancer.org

or call by phone:
866-671-2623 and tell them you'd like to make a donation to help in our crusade.

If you want to give up lunch for a month or even a year, by all means do so, but more importantly, make sure to contact 5 more friends. Tell them about Whitney and the other 500 to 600 children who are stricken with this disease every year in the United States alone and ask them to do just as you have done. Together we can make a difference that will impact thousands of families!! We really want to see this work. I would really appreciate it if you and everyone you know could drop me a note after you've made your donation and have contacted your friends. Send me an email at Kamanwhit0173@aol.com with a Subject Line that reads "I gave up a Lunch for Whitney".

With much love and gratitude,
Karen

Saturday, August 23, 2003 10:25 AM CDT

WOW! I can't believe it's been almost a whole month since I last updated Whitney's page. Our summer has been flying right by. Amanda and Whitney start school up on Sept. 2, so they only have one more week of sleeping in late (of course, that goes for me too). We will begin another round of chemo on Tuesday, so unfortunately Whitney will not be able to attend school for the entire first week because of transfusions and possibly an admission into the hospital. But I am hoping for at least the first day. I guess we'll see.

Whitney has been feeling great lately!! I love being able to write that. After relapsing last June, I can honestly say that I didn't think she would even be with us at this point, say nothing about feeling great. I will gladly take every day that God will give me with my baby girl. She still is on a diuretic to lower her blood pressure and it is working nicely. We still do not know the cause of the elevated pressure, but I am hoping to do an echocardiogram soon to make sure there is nothing wrong with her heart.

Well that is all for now. Whitney and Amanda are with their dad in Tunbridge, getting ready to celebrate their grandparents 50th wedding anniversary. What a nice day for a party!

Take care and please continue to pray for Whitney's good health.
Karen

Sunday, July 27, 2003 10:53 AM CDT

Well it's good news from the scans done on Friday!!! The bone scan is absolutely clean, like it was on her last scan done back in May. Her C.T. scan isn't clean, but there is no new progression of the cancer. Thank God! And thank you all who sent special prayers for Whitney.
Also, Whitney's headaches have subsided. I'm assuming that they were the result of her extremely high blood pressure readings, as they have dropped back down to a normal level too now that she is taking Hydrochlorothiazide, a diuretic used to lower blood pressure. Unfortunately, we still do not know what is causing her elevated blood pressure.
She is feeling great today and is off at a party with her grandparents! We start another round of chemo on Tuesday.

Thanks again for your thoughts and prayers and please keep them coming.

Karen

Wednesday, July 23, 2003 11:52 AM CDT

Hello Everyone,
It has been a very interesting and scary past couple of weeks as far as Whitney's medical situation.
First of all, her hives continued to bother her until about the 15th. If you read the previous journal entry, you know that she broke out with them on her birthday, July 9th. They were just awful. They kept her home from summer school and horseback riding because she was so swollen and itched so. However, this has been the least of my worries. She ended up in the hospital on Sunday, July 13 with a fever and sore throat. Both turned out to be nothing, but we did stay in the hospital until Wed. the 16th because Whitney continued to have very high blood pressure readings requiring the use of a diuretic to bring them down to a more normal level. This worked temporarily, but once we were released from the hospital, her blood pressure got high again. So now my 8 year old daughter is having to take high blood pressure medicine twice a day. Not only this, but she started having really bad back aches and head aches while we were in the hospital. The doctors don't seem to know what is causing either one or the high blood pressure, but being that neuroblastoma is a cancer of the nervous system, I am very concerned that the cancer is progressing into her skull or brain, causing these nasty headaches. We are scheduled for a bone scan and a C.T. scan early Friday morning, so hopefully we will know one way or another by the weekend.
Please keep your prayers coming in for Whitney that these pains are nothing serious and that we find out why these high blood pressures have started. We need all the prayers we can get right now.

I will update again as soon as I have the results of Whitney's scans.

Karen

Wednesday, July 9, 2003 3:23 PM CDT

HAPPY BIRTHDAY TO YOU! HAPPY BIRTHDAY DEAR WHITNEY....

Yep, it's true, Whitney is 8 years old today!! And what an eventful day it has been. She woke up this morning expecting to go to summer school, which she started yesterday. However, her body had other plans for her. She awakened with blood all over her face and hands due to a low platelet count. Needless to say, that ended any idea of going to school and we headed into the oncology clinic at 9:00 this morning. On the way to the hospital, she broke out with hives from her feet up to her hips and she started to get mouth sores due to her low white blood cell count. She hasn't gotten any mouth sores in at least 2 months. Now that it's her birthday and she has plans to go out to get prime rib for dinner, these nasty buggers decide it's time to pop back up again. So we're in Whitney's private room in the clinic and just as quickly as her hives arrived, they disappeared without any benadryl (which is what they usually use to prevent and alleviate her hives before transfusions). About a half hour later, she broke out with hives all over the top half of her body (keep in mind, this is even before she has received her platelets. At this point we're just waiting for her counts to come back from her blood work). So finally, we get her counts back which shows an extremely low platelet count of 6000, normal being between 160,000 and 450,000, so the nurse hooks up her premedications, including benadryl and hydrocortisone, which like I said before are supposed to prevent any kind of hives due to an allergic reaction. Well the next hour went off without a hitch, but about half way through her platelet transfusion, Whitney once again breaks out with hives, this time from head to toe, giant red blotchy and very itchy hives. Her cheeks were swollen like a chipmunk storing food and her feet were so swollen, she couldn't walk on them. Now, since the benadryl makes Whitney very drowsy and it had been given prior to the transfusion, Whitney had been sound asleep, when all of a sudden she wakes up very itchy! The poor kid. I felt so bad for her. Usually she's up and running all around the clinic, but on her birthday she's stuck in her room sleeping most of the day. So we were finally released from clinic around 3:00 after Whitney received a second dose of benadryl and hydrocortisone.
As soon as we got home, she started to break out again with hives, so I gave her some oral benadryl. So now, Whitney is laying on the couch, getting in one more cat nap before we head out for her birthday dinner with her grandparents.

But I digress. It wasn't all bad. Whitney did get a beautiful porcelain doll for her birthday from all of the nurses in the clinic and she did get out of going to school.
Hopefully tonight will be more enjoyable for her.

Thanks to all of you who were so kind to send Whitney birthday cards and a special thank you to Lorraine Giller for sending her a special birthday box. She loved it! All of your kind words and prayers mean so much to us.

Keep up the prayers for a cure for this horrible monster. Take care,

Karen

Saturday, June 7, 2003 10:46 AM CDT

I know it has been a long time since I updated everyone on Whitney's progress and I am so sorry if people started to worry about her. We have just moved to a new town and my phone just got hooked up yesterday, which was the reason for me not being able to get online to update Whitney's web page. Amanda, Whitney and I have been extremely busy over the last 6 weeks, between t-ball and softball, horseback riding, exercise programs, school and hospital visits, not to mention moving. Every night of the week had us doing something until 7:30 at night and then rushing home so the girls could get their homework done. Next Friday will put an end to all of our running around for a while. It is the last day of school and ball and the exercise program. Thank God!!!
With the end of school comes summer camp. Both girls are excited about that. Amanda will take off for Camp Farnsworth on June 22 for 2 weeks of riding and grooming horses. She is very excited about this. She loves horses! Whitney's camp isn't until July and is a day camp close to home. It's nice to keep her close to home in case there is a problem yet going to camp will give her a chance to be a normal little girl too. She will also be attending summer school for 5 weeks to keep her on track with her studies because she has missed so much school this year. We don't want her to start 3rd grade in the fall and be totally lost.
As for Whitney's medical news, she had a c.t. scan last week and everything looked good. No new growth, which is great!! I am hoping to continue on this chemo regime until fall so that she can enjoy her summer with a great quality of life and very few side effects from the chemo, before moving on to something more aggressive and experimental. Hopefully this monster inside her will stay at bay and will allow her to have a fantastic summer, doing lots of fun things!!

That's all for now. I still have many, many boxes to unpack but I just wanted to let everyone know that Whitney is doing wonderfully right now and feeling great!! Please continue to pray for Whitney.

Take care,
Karen

Tuesday, April 29, 2003 11:15 AM CDT

Sorry to keep you all wondering whether Whitney was still in the hospital or not. In fact, she has come home after a 5 day stay. She was discharged the night after Easter. Her infection and fevers subsided and they able to take the sliver out with a needle. With the help of lots of Emla cream, to numb her hand, Whitney opened up her skin enough with the needle so that the doctor could get in with tweezers and pull out the sliver. What a brave little girl! I think she's going to be a doctor when she grows up!! She became pretty dependent on platelet transfusions this time around, needing 4 of them. But hopefully she'll be ready by next Tuesday for another week of chemo, as it seems to be that time again.
The only problem we're facing now if her blood pressure. During Whitney's admission, she began to get high b.p. readings and the doctors don't know what to make of it. On Friday during a clinic visit, she needed another platelet transfusion, so they pretreated her quite heavily with benedryl and hydracortisone to prevent hives and Whitney's b.p. rose to 172/110. They kept us there to see if it would come down on it's own. After a couple hours it finally began to drop and they released us with a b.p. of 146/94 (much better but still rather high considering she arrived in clinic with a b.p. of 113/64). So now we have an appointment in May to meet with a nephrologist (kidney doctor) to see what's going on, as the oncs. think her kidneys may be having a difficult time excreting the excess sodium from her body. They are also scheduling an echocardiagram, to check things out with her heart. I pray that everything is okay and that this won't make her ineligible for clinical trials.
Please pray for Whitney and that this problem with her kidneys isn't serious enough to exclude her from finding a cure for this horrible disease.

I will keep you posted and let you know how things turn out with the nephrologist. For now, Whitney is feeling great (most days) and is enjoying her Barbie powerwheels that has been released from the garage.

Take care,
Karen

Friday, April 18, 2003 10:25 PM CDT

I wanted everyone to know that Whitney was admitted into the hospital on Wednesday evening with fever and neutropenia, an expected visit but depressing none the less. It turns out this time, she actually has an infection in her hand from a sliver or thorn or something, so she will be in longer than usual. She was very disappointed to learn that she wouldn't be out in time to help with the Easter preparations, so I took the Easter eggs and candy that we use for our egg hunt to the hospital today and let her fill them. Doctors will let her out on a 4 hour pass on Sunday to enjoy the egg hunt and Easter dinner with our family.
Things are a little different this time around because I am not staying with Whitney. This time her dad is because I sprained my knee on Monday and made an emergency visit to the hospital myself. So while Whitney has painting her hospital windows and running around looking for Easter eggs filled with goodies, I have been laying in bed with my leg elevated and icing my knee and trying to ease the pain with tylenol plus codeine (easier said than done). I actually got out yesterday for a little bit and went to visit Whitney and again today. Now my knee hurts like *&^^! Time for some more codeine!!

Talk to you all later. Hope everyone has a wonderful Easter!!
Love,

Karen

Saturday, April 12, 2003 8:51 AM CDT

Hi everyone,
I know it has been a long time since I last updated you on Whitney, but we have just been overwhelmed lately. I am just now getting back to some sense of normalcy (well normal as we now know it). Whitney's benefit last Sunday was a huge success!! It was a beautiful, sunny day after 3 days of snow, sleet and freezing rain. We had a great turn-out with many local families coming out to support Whitney and we were able to raise over $6600.00 for our clinical trial journeys. Whitney's aunt, uncle and cousin came up from Rhode Island and Whitney had a fabulous time with her cousin Brit, who kept her entertained for a good part of the day! We also had aunts and uncles who came up from Massachusetts to spend this special day with us. We had great music, loads of raffles and good food. Whitney had a wonderful time and was on the go the entire day. Of course, the following night she slept for 13 hours!
Now that the benefit is over with, I am up to my eyeballs with thankyou letters. We also started chemo round 10 this past Tuesday. Now I am expecting an admission into the hospital later this week. Since we made it last month without an admission, maybe, just maybe we can do it again. My girls are on school vacation this coming week and my stepsister and her children are up from Virginia for the week, so I really hope that we can slip by without an admission.

Well back to my thankyou letters. I will update again soon.

Thankyou to all who have been so supportive with everything we've been going through. Your thoughts and prayers mean alot to us. Please continue to pray for Whitney and my family.

Karen

Wednesday, March 19, 2003 2:14 PM CST

I know it's been some time since I updated everyone, so here goes:

Whitney is feeling wonderful!! She finished up her 9th round of chemo last Friday, so I am expecting a hospital admission any day now for fever and neutropenia. So far, so good! She had a c.t. scan last Tuesday to see if this disease is behaving itself and I'm happy to say that it is! Not a lot of shrinkage, but no new detectable disease either, which is fantastic! Our oncologist at Dartmouth has been in contact with the doctor from Philadelphia to get more info on the MIBG treatment and they were very interested to see the results of this latest c.t. scan before getting into a lot of details. So hopefully now we can get some answers. If by the grace of God, we manage to go until Friday without an admission, then I plan on discussing this further with Whitney's onc. during our clinic visit.

I wanted to let all of you know that we have established the Whitney Howe Fund and some friends and family members are helping me to put on a benefit for Whitney to raise money to help us pay for expenses associated with whichever clinical trials we decide to pursue. Mark this date on your calendars for those of you who can come.
It will be held on Sunday, April 6 from 2pm until 7pm at the Hartford Elks Club in Hartford Vermont. We have 4 bands who will be taking turns playing music, with dancing and refreshments. We are also doing a raffle during the benefit for some really great prizes, including Dartmouth football season tickets, gift certificates to A.J.'s (a very nice seafood and steakhouse restaurant in White River Jct.), P&C Foods, Shaw's, Cloverleaf Jewelry and Body Language (a piercing, tattooing and tanning salon). We also have mobil gas cards, a basketball hoop and pole set, large teddy bear, free weekend from Enterprise car rentals and a 3 day kayak rental. We are hoping to also get Six Flags tickets and Boston Red Sox tickets donated as well as some other goodies. Lots of great stuff!!
We are selling the raffle tickets ahead of time as well as at the benefit, so if you would like to buy some raffle tickets, just give me a call at 802-295-5390.
Also if you can't make it to Whitney's Benefit but would still like to make a monetary donation, please feel free. You can send a check directly to our bank at the following address:
Mascoma Savings Bank
Maple Street
White River Jct., VT 05001

Or you can send a check to my post office address: PO Box 107
Wilder, VT 05088

Please make sure that the check is written out to the Whitney Howe Fund.

That's it for now. Hope to see you at Whitney's Benefit!

Karen

p.s. THANKYOU TAMMY FOR ALL OF YOUR HELP GETTING THIS BENEFIT TOGETHER!

Wednesday, February 26, 2003 3:11 PM CST

Well Whitney and I spent a good part of the day in the clinic yesterday. Monday night Whitney started to bleed from her vagina and bottom. It wasn't alot, but it was definitely unusual, so I took her right into the clinic Tuesday morning thinking that she needed a platelet transfusion. She did! She had a platelet count of 7 and all along the sides of her vagina was bruising from the low platelets. Kind of scary, especially since the nurse practitioner couldn't figure out why this had happened. She said that sometimes kids with low platelets get that kind of bruising if they straddle something, like a bike or sliding down a railing or something bumpy like that. Whitney had done nothing like that. I wouldn't let her knowing that when we left the hospital Sunday, her platelet count was 20. So anyway, she did receive her platelet transfusion. Her doctor was going to do the transfusion without any benedryl and I told the nurse "no" that Whitney needed to have the benedryl to prevent her from having hives. This had happened once before back in September, the day we headed to Camp Sunshine for our retreat. So the nurse went to talk to Whitney's oncologist and he agreed to pretreat her with benedryl. I would have thought that this info would have been in Whitney's chart. Go figure!!
Well Whitney broke out anyway. She had an allergic reaction to the platelet transfusion and ended up looking like a tomato with bumps all over her body. Obviously, they didn't give her the normal amount of benedryl that our regular nurse pretreats her with. Imagine if I had let them do the transfusion without any benedryl at all!! I was quite perturbed by all of this. You would think by now, the medical staff would have realized that I sometimes know what I am talking about. I pay very close attention to what happens to Whitney. I guess it's a good thing that I do!!
Anyway, they started an i.v. drip with hydrocortisone and also gave her more benedryl orally. Needless to say, Whitney was one tired girl all last night. But no more hives or itchies. Thank God!
As far as Whitney's shots, she still needs them for the next couple of days. Her ANC was about 1200 and they want it to be about 4000 before they stop her neupogen shots. Other than yesterday's little fiasco, Whitney is feeling wonderfully! She went to school today and actually participated in gym!!

That's all for now. I will report again soon.
Take care,
Karen

Monday, February 24, 2003 5:01 PM CST

Hello family and friends,
It has been almost 2 weeks since I last updated everyone, so I thought I had best let all of you know how we are doing. Whitney finished her 8th round of chemo on Valentine's Day just in time to race back to school for a celebration party with her classmates. They all really miss Whitney when she is absent, so it was a nice treat for all of them. That day also started Whitney's and Amanda's school vacation for a week. That Sunday we went to Lake Placid to see Disney on Ice's Jungle Stories. It was a fabulous show, well worth the long drive. As an added bonus, I spoke with the person in charge of the show about letting Whitney (and Amanda too) get her picture taken with some of the characters after the show. They were so wonderful. We all got our picture taken with Mickey and Minnie Mouse. Whitney just loved it. As soon as I get the pictures developed I will post them in her guestbook.
Later in the week, Whitney ended up in the hospital as expected with fever and neutropenia. This was Thursday evening, Feb. 20. She was immediately placed on i.v. antibiotics and her fevers diminished late that night. We were released yesterday afternoon, but Whitney has to continue taking an antibiotic for a sore gum. The doctors couldn't tell if she had a molar coming in or if there was an actual cut in her gumline, which could have gotten infected and caused the fever. So she will continue on this antibiotic for the next week. While in the hospital, Whitney received 2 platelet transfusions and 1 packed red cell transfusion. When we were released yesterday, her platelet count was back down to 20 so she may need another one. We go into clinic tomorrow to check her counts and see if we can discontinue her neupogen shots.
Well the kids started back to school today and already Whitney is complaining about a tummy ache. She went to visit the school nurse and asked her to call me. This was at 1:15 in the afternoon. I told the school nurse that as long as Whitney did not have a fever, I would rather her stay in school. So she remained there for the last hour of the school day. I think she just really misses me when she's in school and feels the need to at least talk to me on the phone. Once I talk to Whitney she seems perfectly content to go back to class and finish out the day.

Well that's all for now. Whitney is out to dinner with her dad and Amanda is still working on her homework. We will be doing scans in the next week or so. I will make sure to let all of you know what the results are.

Thanks for reading Whitney's journal and for all of your prayers and support.

Love to you all,
Karen

Tueday, February 11, 2003 11:28 PM CST

Hello everyone,
It's 12:20am here on the east coast and since I am waiting for my brother, who is staying with us for a few days, to get home I figured that I would update all of you.
Actually, there isn't much to say. Whitney continues to feel great. She started her 8th round of Topotecan and Cyclophosphamide today and will continue with this through Friday. Our nurse will speed things along on Friday so that Whitney can make it back to school in time to celebrate Valentine's Day with her friends. After that, she is off to spend the some time with her new big sister, Olivia. Whitney is very excited about this because they are going to go to a museum and then make ice cream sundaes. Olivia attends Dartmouth College and everything is within walking distance, so they should have a great time. Thankyou Olivia for being so wonderful with Whitney!! She really enjoys the time you spend with her.
I also plan on sitting down with Dr. Larsen (Whitney's oncologist) tomorrow to discuss treatment options that I have been researching and to get his perspective. I am going to ask him to call CHOP, Children's Hospital of Philadelphia to get some info on their MIBG therapy and set up a consultation appointment and a time to harvest some of Whitney's stem cells. With the MIBG treatment, a stem cell rescue may be necessary, as with her transplants 3 years ago. We will most likely do another ct scan after this round of chemo since we have been doing them about every 8 weeks since her relapse. Of course I am hoping that this chemo combination is still benefitting Whitney, but if it isn't, we need to have the next step in place. Even if it is still working for Whitney, she can still go to Philly and try to get the stem cells harvested. I have been told that because Whitney has already had stem cells harvested for her transplants, that we may not be successful in trying to get more. In that case, we would not be able to do the MIBG treatment. However, the handful of children that have relapsed and gone this route that I have read about through my online support group haven't had difficulty with this process, so I am hoping that Whitney will follow suit.
This Sunday, my mom is taking Amanda, Whitney and me to Lake Placid, NY to see Disney on Ice's Jungle Stories. We are all looking forward to this. We attended The Beauty and the Beast last year and the show was spectacular!
I also have great news about our upcoming trip to Disney World. I have been busily writing letters to local clubs and organizations requesting financial help to get our family to Disney World. Right after Whitney relapsed, I asked her what she wanted most in the whole wide world to do and she said "to go back to Disney World and see the Princesses". We enjoyed a fabulous trip to Disney, complimentary of the Make a Wish Foundation back in November of 1999, but because Whitney was only 4 years old, she doesn't remember a lot of the memorable experiences. Anyway, so far we have $1500.00 saved, thanks to generous donations from the Emblem Club (the local women's auxiliary for the Elks Club), Children's Wish Foundation and the Eagle's Club. All three organizations have donated $500.00 each. Thankyou all so much. We are very grateful for your assistance.
While I am giving out our "thankyou's", I just wanted to say thanks to everyone at the Hanover Go Go Mart for sponsoring my family for Christmas. This is a grocery store (mini mart) that is on route to the hospital that Whitney and I stop at quite often for snacks, breakfast and lunch when we go to clinic and they were wonderful enough to help us out with presents and LOADS of food for the Christmas season. You all helped to make our holidays a little brighter! I will always be grateful.

Thankyou all for your love and support during our difficult time. We appreciate all that you do for us and please continue to pray that Whitney and all of the other beautiful children are cured from this devastating disease.

With love,
Karen

Saturday, February 1, 2003 5:34 PM CST

Hi all.
All is well here in Vermont and a little warmer the past couple of days too! We have all been able to thaw out a little bit from the chilling temperatures over the last couple of weeks.
Whitney continues to do well. She went in to clinic yesterday for blood work to see what her counts were. Everything was fine. We were supposed to start her eighth round of chemo this Tuesday but we have managed to postpone it a week. We have a trip planned for Lake Placid on February 16th to see Disney on Ice and I didn't want to take a chance that Whitney would end up with a fever that would cancel our trip, so the doctors said that it would be okay to wait a week. I imagine that we will repeat scans after this round of chemo, as we have been doing them about every eight weeks.
Whitney is spending tonight at my parents' house for the first time without me, which gives me and Amanda a special night alone at home together. I have a feeling we will be playing a lot of "Sorry" tonight (it's Amanda's favorite game). We plan on going bowling tomorrow with Amanda and Whitney's cousin Julie. That should be a lot of fun!!

Before I sign off, I want to thank all of the Hugs and Hope volunteers who have not only sent cards and packages to Whitney, but to those that have sent packages to Amanda as well. She really appreciates the special attention.

Take care and I will update again shortly.
Warmest wishes,
Karen

Thursday, January 23, 2003 at 07:43 PM (CST)

Hello everyone,
Sorry that I haven't updated the journal recently but I haven't been home long enough to do so lately. Whitney had her chemo the week of of Jan. 6 and everything went smoothly and according to plan. Whitney's counts dropped as they always do and she was admitted into the hospital on Jan. 14 with fever and neutropenia. However, her fevers would not subside so our stay this time lasted a week....a very long week! So we ended up spending my birthday in the hospital, only fair since Whitney had to go get poked and blood work done on her birthday back in July. Whitney was disappointed about spending my birthday in the hospital since her father, sister and she were planning on getting me a cake and having a little party. I told Whitney we would have fun anyway since we could play airhockey in the hospital and her father and sister ended up bringing dinner and a cake to the hospital that night. So all was good! During our stay, Whitney was also fighting with a nasty upper respiratory infection and stomach flu. Everything just kind of hit her at once this time. It all worked out for the best though. Since Whitney was in the hospital for so long, she was able to sell lots of girl scout cookies to all of the doctors and nurses, 204 boxes altogether!!! It's amazing how many people love those cookies. Whitney's sister, Amanda is a girl scout for the first time this year as well and she was able to sell 131 boxes. I guess I know who will be busy delivering g.s. cookies in March!

I wanted to send a special thankyou out to Pam Sheldon of the Hugs and Hope Club for sending Whitney her balloon bouquet while she was in the hospital. I think I already told you how much she loved it, but I just wanted to reiterate my gratitude. Thanks again! Also a big "thankyou" to all of the Hugs and Hope volunteers who have been so kind to send Whitney "happy mail" and to those of you who also think about Amanda, I especially want to thank you. Amanda often times feels left out and it really means a lot to her when people think of her and send her letters and cards to. One more "thankyou" that I can think of right now goes out to Ruth Durkee. Thankyou so much for sending Amanda the little stuffed lamb. She loved it and it meant a lot to her as well.

I know there are lots of other people out there who deserve special thanks, but for now, just know that I appreciate everyone's caring and thoughtfulness during my family's difficult time.

Thankyou all so much and please continue to send special thoughts and prayers for Whitney,
Karen

Wednesday, January 08, 2003 at 06:30 PM (CST)

Hello all. I hope everyone is starting the new year off right and in style!! I know it's been a little while since my last journal entry, but quite frankly there has been nothing really to report (this is a good thing sometimes, right). Both Whitney and I have been fighting with a nasty cold, but it looks like we've finally won, as it seems our coughs and sleepless nights have diminished. Whitney started her 7th round of chemo on Tuesday and is still feeling pretty good, although tonight she has been complaining about her tummy hurting some and went to bed early to rest it. I'm sure she'll be fine in the morning. This chemo that she is receiving now has very few side effects as far as nausea and so forth. She will be out of school for the rest of this week while she finishes up her chemo treatment and Tuesday through Friday of next because of expected neutropenia. Of course this doesn't bother Whitney at all, as she would much rather spend her time in the hospital chasing the nurses around giving them pretend shots and babysitting for the babies that come in. It's amazing how fast Whitney can run around hooked up to a pole when she's hunting down nurses and other grown-ups so that she can "doctor" them up. She tells me that she's going to be either a doctor, nurse or teacher when she grows up. I look forward to seeing it, whichever career she decides to pursue.
Whitney asked me today if I wanted her to die. I couldn't believe my ears. Hiding back my tears, I stopped pushing her in the stroller and knelt down beside her. I didn't know what to say as I hugged her tight against me trying to stop myself from crying. I explained to her that we're doing this chemo because I'm not ready for her to receive her angel wings and leave me and that was why we were also looking into clinical trials. So after hearing this, Whitney is finally okay with the idea of going to Boston or New York to participate in a clinical trial. She was really scared at first of going far away from everyone that she loves again, but I think now she is okay with it. She has told me that she is not ready to die and as long as she feels this way, we will keep on fighting this monster called neuroblastoma.

Thank you all for your thoughts and prayers. Please continue to pray for my brave little girl.

Karen

Friday, December 27, 2002 at 10:30 AM (CST)

Hello everyone! Hope you all had a merry Christmas! We had a very memorable one that's for sure. We spent Christmas morning at our home with Amanda and Whitney's dad and then headed up to our aunt Patty's house in Vershire for dinner. The girls had a wonderful time and got to show off some of their new presents. It snowed all day and by the time we were ready to leave, it was a blizzard outside. It was very nasty driving home along the unplowed roads, even the interstate was a disaster. Visibility was almost nonexistent and the only way we could tell where we were going was to watch the guard rails piled up with snow. The worst part was when we finally hit Quechee and tried getting up my mom's road (we didn't make it the first time). Luckily a snow plow came along and cleared a path for us along the road, but by this time we had lost power of our windshield wipers. So then my stepfather had to drive with his head sticking out the window so that he could see where we were going, with me on the other side watching the snow banks that the plow truck had piled up along the side of the road. It was a pretty scary ride!! Once we got to the driveway, we all began to feel a little safer when we saw one of my parents' neighbors out snowblowing the top of the driveway. However, because it was still snowing so hard and because we had no wipers, we did not notice how much snow had accumulated in the bottom half of the driveway. We smashed right into 2 1/2 feet of snow and couldn't go anywhere. We couldn't even get the passenger side doors open! We finally got out and my mom, Whitney and I trudged through the snow, down my mom's driveway, shoveling a path as we went along while the boys stayed with the car to get it unstuck with the neighbor's help. We had never been so happy to be home in all our lives!! But who's complaining, after all we got our white Christmas!!!
As far as Whitney's treatment plan, she is feeling great now. She has an endocrinology appointment on Thursday to check her thyroid functions and to see how she is growing and her next round of chemo is scheduled to start Jan. 7, the day after school starts back up. So she will be in school the first day but will have her tutor, Eileen come to the hospital the rest of the week and most of the following week.

I hope everyone has a wonderful and exciting New Year's celebration and thanks for all of the messages that have been written in our guestbook. Whitney loves for me to read them all to her!
Love to you all,
Karen

Tuesday, December 17, 2002 at 04:08 PM (CST)

Hello all.
Whitney's counts are much better today. Her white count is 6.0 so I can now stop giving her shot. Her platelet count was low again and her nose started to bleed this afternoon, so we may need to go back to clinic tomorrow to get another platelet transfusion. This is unusual for Whitney since she just got a transfusion on Friday, but we'll see how the rest of the night goes. I plan on her going back to school tomorrow and just in time. On Thursday, Whitney's friend Beth (a childlife specialist from the hospital) will be coming in to talk to Whitney's class about cells and how they work. Her classmates have been very curious about cells and wondering if Whitney's bad cells are causing her to be sick alot. Kids are so smart, alot smarter than many parents give them credit for! Whitney has been meeting with a tutor named Eileen whenever she is unable to go to school. She meets us at the hospital or at home depending on where we are at that particular time. Whitney enjoys her time with Eileen. She always makes it fun for Whitney, usually ending their learning session with a craft activity, which Whitney just loves.

Well that is all for now. I will post again in a couple days.

Happy Holidays to you all!
Karen

Saturday, December 14, 2002 at 12:44 PM (CST)

Hello everyone,
Well Whitney had her clinic visit yesterday for blood work. We were there for 8 1/2 hours!! She did in fact need both blood and platelet transfusions, which took all day. I don't know what the hold up was in the blood bank. We were almost admitted too. Whitney's had a fever twice over the last two days, so I've been watching her closely. She had wanted to go to her dad's house this weekend to go snowmobiling, but the oncologist didn't think that was a great idea considering that her platelets were so low yesterday and we didn't know how much of a boost she would get from her transfusion. Her oncologist said that they have had several snowmobile accidents over the past couple years involving children with low platelets, so I decided that Whitney's snowmobiling adventures would have to wait. Of course, she was disappointed and mad at mom, but I explained to her that we will have plenty of snow over the next few months, especially at her father's house where it seems like the snow lasts forever in the spring.
Whitney's white count is still extremely low so I think I will be keeping her home from school again on Monday.
Today, we have been busy wrapping Christmas presents. I think Whitney has made and wrapped more presents for Santa than he has in his entire sleigh!! She's a very thoughtful little girl. And yes Jane, Whitney has written a letter to Santa. It's very sad when all your 7 year old wants from Santa is for her cancer to go away and crutches because of her sore leg. I almost started crying when she said that to me.

Anyway, her leg does seem to be feeling better as she's now dancing to a Shania Twain video on t.v.

Well I will talk to you all later. Thanks for all your thoughts and prayers.
Karen

Thursday, December 12, 2002 at 03:21 PM (CST)

Let it snow! Let it snow! Let it snow! Wow, we got over 7 inches of fluffy, white stuff last night. It was so beautiful to wake up to this morning. The kids had today off from school so they have been driving me crazy all day. Actually, they've been getting along pretty good, as good as it gets at my house. They got right up this morning as soon as they heard there was no school, got all of their winter gear on and headed outside to go sledding. I got them to do a little shoveling too (surprise, surprise).
Whitney has been holding on. Tuesday she had a white blood cell count of .4, that's 400 (normal for a child is between 5,500 - 15,000)so she has been out of school since Monday. We go back into clinic tomorrow for lab work. Tuesday her hemoglobin was 8.1, so she may be in need of a blood transfusion. She is acting pretty tired today, of course she's been playing hard outside too. Since Sunday I have been giving Whitney her GCSF shots that will help boost her immune system, so hopefully she'll be able to go back to school on Monday. Until then she will be seeing her tutor either at home or in the hospital. She really enjoys her time with her "special teacher".

That's all for now. I will keep you all informed.
Thanks for your messages in our guestbook. If you haven't signed our guestbook, please do so. We love to see who's checking in on us.

Karen

Tuesday, December 10, 2002 at 07:24 PM (CST)

Hello everyone,
Sorry that I have not posted lately, but we have been very busy with the holidays and trying to find a nicer place to live. We have found a new home near my parents so that they can help us out with Whitney's sister, Amanda when Whitney and I are in the hospital. I am very thankful for their love and support during this difficult time.
As for Whitney's overall wellbeing, she is feeling great!!!! She just finished up her 6th round of Topotecan and Cyclophosphamide and seems to be responding to it very nicely. We completed a bone scan and c.t. scan last week because Whitney had been complaining about pain in her left leg (one of the locations in which cancer had been detected). The bone scan was clear and normal and the c.t. scan showed minimal shrinkage with no new lesions. THANK GOD! I had been worried that the pain in her leg was due to the neuroblastoma progressing. Although I was preparing myself for this terrible result, I was happily mistaken. So now we will continue with the current treatment until it stops working. At that point, we will hopefully be able to get her into a clinical trial. I'm still not sure which one right now, but I am constantly reviewing our options.
Whitney had a clinic visit today for lab work. She is out of school for the next several days due to her being neutropenic. Of course, it is very possible that we will be admitted with a fever any day now as well. But for now she is doing wonderfully! We went and cut down our Christmas tree on Sunday. Whitney got to pick it out and I don't mind saying that she did a fabulous job. She picked out the prettiest tree there!!

I promise to post again soon.
Take care and thanks for all of your love and support.

Karen

Saturday, October 19, 2002 at 02:38 PM (CDT)

Hello. My name is Karen Downing. I have 2 children, Amanda, age 10 and Whitney, age 7. Whitney was diagnosed with stageIV Neuroblastoma, a childhood cancer, in July 1999, shortly after her 4th birthday. She underwent 5 rounds of chemo, tumor resection, local radiation, total body irradiation, 2 stem cell transplants and 6 months on accutane, finishing up her treatment in March 2000. Much to her oncologists' surprise, she relapsed after almost 2 1/2 years in remission in June 2002. Whitney is now 7 years old and is currently receiving the chemo combination of topotecan and cyclophosphamide at Dartmouth Hitchcock Medical Center in Lebanon, New Hampshire. We have been looking into clinical trials at Dana Farber, Memorial Sloan Kettering and Texas Children's Cancer Center. We have been admitted into the hospital with fever and neutropenia, with hopes of getting out tomorrow if her ANC is high enough.

Monday, October 14, 2002 at 03:56 PM (CDT)

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