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Tuesday, September 26, 2006 12:57 AM CDT

Hello again!

September 17th was my 16th birthday! It was tons of fun.
Earlier in the year, the church held an art auction. Some of the church members donated some of their things to auction off. One of those was a weekend at a beach house. The weekend it was offering was my birthday weekend! We bid on it, and won! The house was amazing, 6 bedrooms, 3 stories, right on the beach. 10 of my friends came afterschool on Friday the 15th to my house and we took a rented passenger van down to Brigantine, right next to Atlantic City. The house was absolutely gorgeous. We all picked rooms on the first and second floors. The third level was the kitchen/living room/dining room/bar area. We hung up there most of the time. The first day we played games, did a giant puzzle, and talked. That night we stayed up really late and pulled pranks on each other. Some of my friends and I switched the other girls' clothing into other people's bags! The second day we got up and took a morning walk on the beach. It was amazing. Later that day we went to the Atlantic City boardwalk, which was a lot of fun. 8 out of the 11 girls there went on the Rocket, which is a huge slingshot-type ride. 2 at a time, they got into a round metal cage and were shot up about 200 feet into the air! It was crazy! I was too smart (aka too chicken) to go on. ;) Then we went to the beach and boogie boarded, swam, and tanned. 3 girls went home after that because they had other things to do that weekend. We went to a Chinese restaurant for dinner. We were talking and giggling and laughing and being silly. The staff was very happy to see us leave! That night we stayed up late again and pulled more pranks, like taking out the center of the cream in some Oreo cookies and putting mustard in the middle! The next morning we finished homework and played more games, then went out to the beach one last time. We went back and cleaned the house, then packed up and got ready to leave. Just as we were all leaving, the ice cream truck pulls up! We of course had to get some ice cream. It was the perfect ending.
The whole weekend was amazing. We all had a great, great time, and all my friends and I seemed to become closer too. It was one of the best weekends we'd ever had.

There are new pictures up of my party!

Thursday, August 31, 2006 1:42 PM CDT

New pictures!

Hello again!

On August 6, we got some more bad news about a family member: Uncle Mike's wife, my Aunt Marie, passed away after battling cancer. So, my mom, brothers and I packed up and left to go out to their home in Las Vegas. My dad stayed because he had work still. We drove for 5 days, stopping each night at a hotel. Most of it was flat, long, empty farmlands. Lots of cows. Please, no more cows! lol Finally, somewhere around Colarado, we hit the mountains. They are beautiful. We've never seen real mountains before, and we were amazed at how different they all were. But then, after 2 states worth of them, they got a little old. ;) Finally we hit Las Vegas. We stayed at Sam's Town, a hotel near Uncle Mike's. It was pretty nice, with an indoor water and light show. And a big buffet!
We went to Aunt Marie's memorial service. Uncle Mike is coming out to New Jersey to have another one here.
The next week, we mostly walked around and checked everythng out. We also swam in Uncle Mike's pool a lot. It's hot out there! Really hot! There were lots of arcades too, so, since Liam and Skyler were here, we had to hit up those! We also went to a Coca-Cola Store, where you could buy a "Tastes of the World" and get to try 14 different Coke products from around the world. That was a lot of fun, and kind of disgusting! There were some really nasty ones! But I found a new favorite drink called Lilt, from the UK. It's an orangey soda that I couldn't get enough of!
Dad flew in after the first week. We saw the Hoover Dam with him, which is huge and high and therefore very scary! But it's really amazing. We also went to see our first show there at the Luxor. It was Drew Carey and the Improv All Stars. It was basically a live Whose Line Is It Anyway, with Ryan Stiles and Chip and Greg and some other cast members from the original. It was very funny, but Liam, Sky, and I were some of the only kids, and we were sitting in the front row on the side, so of course Drew Carey saw us and started picking on us.
The last 2 days, we checked into Mandalay Bay and got this gorgeous penthouse-like suite. At Mandalay Bay, they have a great swimming pool area, with a big wave pool, a lazy river, and lots of regular pools. We spent an afternoon there. That was lots of fun. Later in the week my parents and I went to see The Amazing Johnathan, a comedian/magician. He's hilarious. We had a good time.
After that, we took off for home. Along the way, we stopped at the Grand Canyon. Another big, high, scary place! But stunning. Unfortunately, that morning, I woke up with a fever, a major headache and a dull ache in my chest. It hurt to walk around the Grand Canyon. This got my mom worried, so she somehow found a walk-in clinic. The doctor said it was probably just the elevation, but with my medical background, I should probably get a stronger antiobiotic. So I got stuck taking another medicine. lol Later in the day, we came across Meteor Crater, which was another big hole in the ground! lol It was pretty cool too though. The next day I woke up feeling a lot better, and we were at a lower elevation. So we're pretty sure it was just the elevation.
We got onto Historic Route 66 and took that for most of the ride home. The rest of the driving passed pretty uneventfully, read: boring. ;) lol We were all ecstatic when we got home! It felt great to be here.

And that was What I Did On My Summer Vacation. lol Sorry for it being so long, I like to write. :)

Thursday, August 3, 2006 6:45 PM CDT

Hello again! Haven't written in a long time. Summer so far has been awesome, crazy, lazy, busy, fun, hot, tiring, and great. We had no real vacation plans, and the little we did kept getting switched. So we've just been doing whatever we feel like. It has been great! Some days we stay home and be lazy, while other days are jam-packed non-stop action. We've been to the beach, to waterparks, to many carnivals and fairs, seen many movies with friends and family, been to many restaurants, went to some more Sweet 16s, seen fireworks and hot air balloons, and been to the library every week. It has been so much fun.

We just finished Vacation Bible School at our church the other week. Mom and I helped out at Crafts while Liam and Sky went to a Woodworking Camp. They made some really cool things.

My craft room is finally "finished!" I say that because there will always be more to do and more crafts to add, but Mom and I spent a week putting away all the beads and other crafts. It's now very neat and organized and I love it! Tomorrow I'm having a group of friends over to see it.

Healthwise, I'm doing great. The Accutane is still bothering me, making my skin really dry and easily susceptible to sunburn, but that's really my only complaint. I feel really well.

August 1 was Mom's birthday! Happy birthday!

Thursday, June 22, 2006 1:23 PM CDT

School is out! Yes! Last day was Tuesday, June 20. It was a half day and we all got to sign each others' yearbooks. Lots of fun.

I've been having lots of Sweet 16s lately. I had one June 10 and another one yesterday. There's another one coming up soon in July. I'm not a big dancer, but I still have a lot of fun. Last night's party was, thankfully, a pool party. That was a blast! I went swimming, played Ultimate Frisbee, did lots of hula hoops, and ate lots of food! It was great.

June 9 was the Relay for Life, which I went to with a big group from my high school. The Relay for Life is a fundraiser for cancer research. People form teams and get sponsors who pledge money. Then, each team is supposed to have at least one member walking on the track at all times. People take turns walking. Throughout the night, there's a talent contest and other activities. It was a lot of fun, and really special. The first walk around the track is a special "Survivor's Walk," so I took the first walk around the track with all the other survivors. I was the only kid. The next lap was a survivor and caregiver's lap, so my dad and my brothers walked it with me. My mom tried to get on the track, but missed us, so she ended up watching. The next lap was a Memory Lap, so Mom got on this time and we walked for Grandma. It was really nice.
Later in the night, as it got dark, they lit up luminaries around the whole track. On the far bleachers, more luminaries were spelled out to read "HOPE." It was amazing. My friends kept crying and hugging me the whole night! I'm so thankful for them.

Wednesday, June 14, 2006 5:32 PM CDT

Thank you to everyone who sent condolences, cards, emails, gifts and phone calls to us in such a sad time. We very much appreciate your kind words, thoughts and prayers. During such a difficult time, your caring has given us strength.

With love, Gemma

Wednesday, June 7, 2006 5:23 AM CDT

Hi.

My mother's viewing will be held Thursday (tomorrow)from 3:00 - 5:00 & 7:00 - 9:00. It will be held at the Bermingham Funeral Home in Wharton, NJ (973) 366-0520.

Directions:
1: From East (NY): RT. 80 West to Exit 34A (Wharton/15 South) Go through first traffic light (gas station on right) and make a left into turn around back onto Rt. 15 North. Pass light and make right onto N. Main St. Follow Main Street through center of town almost to the T. (if you get to the T, you've gone a little too far) Funeral Home is approx. 1-1/2 to 2 miles on right at 249 South Main.

2: From West (PA): Route 80 East to Exit 34 make left at Bottom of Ramp onto N. Main St. go 1 3/4 mile funeral home on right at 249 S. Main St.

3: From South (Jersey Shore): Rt. 287 North to Route 80 West (see #1)

4: From North (CONN, MA, Upper NY): Rt. 287 South to Rt 80 West. (see #1)

5: From Rt. 46 East (Roxbury Township): At the Bottom of Mine Hill (at St. Mary's Church and before St. Clare's Hospital) make left at traffic light onto S. Main St. Funeral home up 1 and 1/2 blocks on left at 249 S. Main St.

6: From Rt. 46 West (Denville): Go past St Clare's Hospital in Dover and make a right at traffic light at St. Mary's Church onto S. Main St., funeral home up 1 and 1/2 blocks on left at 249 S. Main St.

7: Rt. 15 South (from Sussex)
Rt. 15 South to traffic light (a little before Rockaway Mall)-(COSTCO ON LEFT - SHOPRITE ON RIGHT), make right at light on East Dewey Ave. go 1/2 mile to next light and make left onto North Main St. Funeral Home is 1-1/2 mile on right at 249 S. Main St.
-----------------------------------------------------
Her mass will be held at St. Mary's Catholic Church on Friday morning, 10:00 a.m. St. Mary's is about a block & a half from the funeral home.

Directions to Gate of Heaven Cemetery - East Hanover, NJ. Here is the link to the Gate of Heaven cemetery: http://www.njcatholiccemeteries.com/mapgateofheaven.htm

The repast will be back near St. Mary's Church after the cemetery. It will be at 95 St. Mary Street, a small white house near the church.

Thanks. Love, Gemma

Sunday, June 4, 2006 6:08 PM CDT

Hi.

Just some quick information about my mother, Eileen's, viewing and funeral arrangements. There will be more info in a day or two.

Thursday, June 8th, there will be 2 viewings. 3:00 - 5:00 & 7:00 - 9:00 p.m. They will be held at the Bermingham Funeral Home in Wharton, NJ. Directions will be forthcoming. There is no website for the funeral home.

Her funeral mass and burial will be Friday, June 9th, starting at 10:00 a.m. at St. Mary's Catholic Church in Wharton. The burial will follow at Gate of Heaven Cemetery in East Hanover, NJ - about 20/30 minutes from Wharton.

There will most likely be a restaurant luncheon to follow but this hasn't been fully decided yet.

Thank you to everyone for your phone calls, thoughts & prayers and offers of help. We appreciate your kindness and love. My mother passed away quickly & peacefully - for which will be eternally grateful to the good Lord above.

Love to all.

-------------------------------

New pictures up of our Memorial Day Weekend trip to the beach - we had a great time!

Wednesday, May 24, 2006 11:09 AM CDT

Gemma's mother, Eileen passed away today Friday 6/2. We're heading up there now. She was admitted to the hospital a couple days ago and went from bad to ok to worse. Will provide more info later - John

Hi,

Emailed Hope's oncologist last night since we hadn't heard anything about her CT scan yet. He emailed back today to say he and her oncology team had spent many hours looking at her scans with the radiologists and feel that although there is a possibility of a spot in her left leg (the CT scan doesn't check her legs, just the MIBG scan did), there is no new growths in her abdomen as they first thought. In fact the old tumors in her stomach and liver have even shrunk a little further. They're still there but "inactive" (stable). So, good, good news!!!!!!

Their plan is to keep her on the Accutane for now and he hasn't mentioned radiation again. He would like her to have another MIBG scan in 2-4 months.

So, I feel I can breathe again. Hope doesn't know yet since she's at school. Can't wait to tell her.

The boys said there are 19 more days of school (not counting weekends) and they cannot wait!

Looking forward to the Bertelson Family Annual Memorial picnic on Sat. Otherwise, no plans for the summer yet.

Hope you all have a wonderful Memorial Day weekend. I know we will.

Love to all.

Monday, May 1, 2006 9:31 AM CDT

Hi.

Due to a technical error - the entry about Hope's latest test results was not saved.

In case anyone did not see that entry - Hope's MIBG scan showed 2 new, small sites. The doctors want to keep Hope on Accutane another 6 months (something she is quite bummed about because her first 6 months just ended yesterday and she was very much looking forward to the end of that medicine). They're also beginning talk about localized radiation. We'll discuss that more at the next check-up. I'm still trying to arrange a CT scan.

Hope wrote that, although we were hoping it wouldn't return, we knew and had been told repeatedly that around 18 months, neuroblastoma has a habit of returning in older patients. So, 17 1/2 months later, here we are.

Otherwise, everything else is fine. Hope's looking forward to the end of school in 7 weeks. Hope and another Girl Scout just went to Ronald McDonald House in New Brunswick yesterday to cook a dinner. And we're trying to figure out what we can do this summer.

I gotta run to a doctor's appointment myself. Love to all.

Wednesday, April 19, 2006 8:28 PM CDT

Hi All,

The craft room is just about done! It's all painted, the table is here, the lighting has been put in, the cabinets are built, the kiln is here, the quilt is hung! It looks really great. Thank you so much, Make-A-Wish! Now I just have to put all my beads in the containers...which'll take me two years, most likely. lol

New pictures of Spring Break in Philly. Pictures of the craft room coming soon! (Once I upload the photos from the camera into the computer, that is. ;-) )

Monday, March 13, 2006 5:14 PM CST

I love Spring Break! lol It is really nice to have a week off, even if I do use it to try to catch up with the rest of the class by doing a lot of the homework I missed while I was absent. Seems like I can never catch up, no matter what. Just when I think I am almost done, I get sick and am absent again, adding more make-up work to my pile. But I do what I can.

We went to CHOP on Tuesday for an MIBG injection and on Wednesday for the scan and clinic. Normal CHOP stuff.
Usually we just drive in both days, but we decided to rent a hotel in Philly and make a little trip out of it. My Aunt Connie came with my mom, my brothers and me. We got to go on a trolly ride through the city and see some sites. Plus we got to go to Urban Outfitters, which is my favorite store. :-D We were planning on doing a lot more on Wednesday, but unfortunately, Liam got sick, so we had to cut out trip short. He's better now though.

We got the cabinets and the kiln for the craft room! Yay! It's very exciting.

And that's about it. I've got to get back to doing homework. Hope everyone's doing well and enjoying Spring Break! Hope everyone has a happy Easter!

Monday, January 23, 2006 7:44 AM CST

Hi.

Things here are good. Hope will go to CHOP on Wed. Feb. 1st, for a 3 month check-up. They had stretched it to every 6 months, but since she's on Accutane, she has to be checked every 3 months right now. Will fill you in when we know anything.

The big news here was that Make-A-Wish came and visited on Saturday. After John & I nixed a horse (sorry Hope, but just ain't gonna happen), she decided on the wish of a craft room. So, they sat and got to know Hope. Took some measurements of the room. And now have to pass it on to their superiors who will either say yea or nay. Not sure when we'll find out but I'm guessing sometime in the next couple of weeks.

The other big news here - at least for Skyler - was that he got his braces off on Jan. 4. And I didn't have it on the calendar and almost missed it! Thankfully, they called and we live right across the highway from the orthodontist.

Liam and Skyler have started fencing. Hope is still busy with school, Girl Scouts, Physical therapy, tutoring and Yearbook. She's still catching colds, but she did make it through her first full week of school two weeks ago. So, hopefully, the immunity is building.

My mom is okay. We were hoping she would be admitted to an intensive pulmonary and PT re-hab, but after the initial visit, they felt she wasn't ready yet for such intensive work. So, we're waiting to see what the doctor decides next. In the meantime, her house is looking good. The second floor is up now, and the rooms have all be framed. They'll have to fix a big hole in the floor and still have a lot of cleaning and scrubbing, but it's starting to come together. They're shooting for an April finish.

That's about it for now. Hoping all your immunities are working well through this bizarre (on the East coast) winter and you're all well and happy.

Love to all.

adopt your own virtual pet!

Monday, January 2, 2006 9:06 AM CST

Hi.

A Very Happy & Healthy 2006 to everyone!

We had a nice and relaxing break from school. Christmas Eve we spent here with my sisters, brother & brother-in-law. Lots of good food - brunch & dinner - & fun shopping in Princeton.

Christmas Day was spent opening stockings & presents here at home in the morning. Then went to John's family to celebrate. Always fun for the kids to be with their cousins. It was a nice day.

Monday morning - we saw my mom, then went to my father's gravesite to lay a wreath.

Hope had a cold Monday - Wednesday, so we laid low those days. She is rebuilding her immune system by catching ever bug that seems to be out there.

Thursday, Hope & I went to Potter's Alley to paint china. John and the boys saw King Kong.

Friday, we went into NYC overnight. Unfortunately, Hope's fever decided to spike again, so she and I stayed in the hotel bundled up in the quilts and watched t.v. John and the boys went to Wollman Rink and went ice-skating.

Saturday morning - Hope woke up feeling much better - so we decided to try to do the things we planned for Friday. We walked to the Cooper Hewitt museum and caught a "color in fashion" exhibit that we all enjoyed very much. Then a horse & buggy ride through Central Park. We were going to skate at Wollman Rink again, but it started to snow/hail/rain and just was too wet & cold. So, we walked down 5th Ave. and looked at the window displays. Very cool. Then had dinner and decided to head home with big, fat snowflakes swirling. It was very pretty. Slow driving - but so pretty.

It was the first time in a few years we were home for New Year's Eve. When we got home, there was a package from Aunt Connie that had lots of bubble wrap. So, we had great noisemakers for midnight.

Yesterday, Skyler had the cold. So, we were lazy and watched the Twilight Zone marathon.

Today, it's back to school - except for Sky (still has a cold). So, it was a fast, quiet, lazy & still fun week.

Hope your holidays were fun, too. Love to all.

Friday, December 23, 2005 9:30 PM CST

Hi.

Not much to report. Still good & boring here - thankfully.

Thanks for all your wishes for Hope. She is well and happy. Attending a round of Sweet 16 parties for friends and just being a normal teen again - what a blessing! Still on Accutane for the neuroblastoma and it is making her skin peel like sunburn, but it's a small price to pay for the possible good benefits - "matured" remaining neuroblastoma cells into "regular" cells.

Just wanted to wish everyone a very Merry Christmas, Happy Chanukah and a very happy & healthy (so important) New Year!

Love to all.

Tuesday, December 6, 2005 7:15 PM CST

Hi.

It's been a month and, thankfully, not much new to report.

Since Liam was sick on Halloween - there has been someone sick in this house since then, mostly Hope. Since all her immunizations to everything were wiped out when she had her stem cell transplant in Jan. '04, it it like she is a 2 year old again (literally)in the fact that she will be prone to catching everything and anything that comes along. Since she is now back in school around a thousand other kids, she is definitely catching everything. She missed the entire last week of school with a fever and bad chest cold. Luckily, her fever stayed under the cut-off of 101., so we didn't have to go into the hospital for I.V. antibiotics. She tries hard to keep up with all her schoolwork and the teachers have been very helpful to her.

Our Thanksgiving was nice. We woke up to a very pretty snow-covered scene. It quickly melted but it was so pretty while it lasted. The rest of the day was just very, very cold. We went to Grandma & Grandpa B's clubhouse in their development. The kids could all play pool, ping-pong, etc... We wound up the evening, after lots of good food, having 13 (of the 17) of us playing "Apples to Apples" (a very fun card game).

A few days later, we celebrated with my mom, sister & brother at a restaurant near my mom's apartment. Since she tires easily right now, we felt it would be better if we did something easy and close to her house. It was a very nice time.


My mom is okay. She is weak and tired alot, but is still receiving PT. She is having a few tests run this week to check why she is so short of breath. She has agreed, also, to start chemotherapy next Monday. She will receive it every Monday for 3 weeks, then off one week. This will happen for 4 months. My brother, Michael, has Mondays off so he will be able to be with her. Hope has always been a lot like my mom, and they are both showing what strong women they are.

My friend's 13-year old daughter, Nora, came through her 12-hour surgery with the answer and surgical correction they were hoping for. It took a long time for her to recover due to an infection, but she is now much better and is at home. Thanks so much for your prayers.

We hope everyone had a very nice Thanksgiving, too. Hoping the upcoming holiday season brings you peace & happiness.

Love to all. PS: Congratulations to my nephew, Danny and his new bride Carla on their recent wedding! Much love to you both.

Thursday, November 3, 2005 8:04 AM CST

Hi All,

Sorry for the long delay. I had mentioned in a past entry that my mom's house was hit by lightning and mostly destroyed (the shell is still standing). What I didn't mention was that during her smoke inhalation test, they found early lung cancer. So, after many months of tests and scans, etc...my mother had her left lung removed almost 4 weeks ago. She was in Morristown Memorial Hospital for a week - get this: in the "Minimally Invasive Surgical Unit" & then in a rehab for two weeks. She was released (much to her delight - she was more than ready to get out)last Saturday. And she's been catching up on rest (you know a hospital is not a place to rest) and working with a physical therapist. My sister Susan and brother Michael have been taking very, very good care of her. I've been getting up there as often as I could to visit.

Hope had her MIBG injection at CHOP on Tuesday and her MIBG Scan yesterday (radioactive medicine that attaches itself to neuroblastoma to make it glow). The results were very good. Her oncologist said that he and another oncologist feel the scan is "negative" (showing no cancer) but the radiologist felt there was "artifact" (a residual amount in a certain spot). They said they'd review it in more detail over the next few days but we are very, very happy with either.

They did say, though, that now they want to start her on Accutane (well-known for acne but also has a tendency to make neuroblastoma cells "mature" and turn almost normal). It was actually supposed to be part of her original protocol, but after all she had been through a year and a half ago, they didn't push it. Accutane also can have a side-effect of liver problems and since Hope has never had a normal liver function test, they were not in a rush to start it. But, they feel enough time has gone by now, and they want to start it. It is hoped that any remaining neuroblastoma cells will be "matured" by the Accutane.

She will take two pills twice a day for two weeks, then off two weeks. She will do this for 6 months with blood tests every month to test her liver function. We are hoping to arrange these tests at Robert Wood Johnson Hospital, since it is closer. The funny part is that they are like gummy candies - which all 3 of my children hate. It can never be easy for Hope. The good part is, that once you start on Accutane, you can never get acne.

Halloween was fun, except for Liam - who woke up with a sore throat and slight fever. We still let him trick-or-treat but he was pretty musha-mush and was more than ready to go home after an hour. He was a "freak video game accident" - he had a controller wrapped around him and his hair was sticking up as though he had been electrocuted. He also had a video game shirt on that read, "Video game tester in training". Skyler was a "freak golf accident" (Hope came up with these ideas - if you ever need a costume idea, ask Hope - she has a million). He was dressed up in an argyle sweater, pants tucked into long, argyle socks and a golf cap with a golf club over his head that made it look like it had gone through his head. Looked pretty good.

Hope was "The Flash". She had a million (exaggeration - but lots and lots)flashing pins on her sweater. Not only did it look cool but was safe, too. She went around with her girlfriends, who then met up with more kids. All in all, 12 of them were out trick-or-treating for 3 hours. She came home and said she had a blast. See new pics.

In the meantime, it's been normal stuff here. School, lots of homework, soccer, Girl Scouts, etc...

Please say a prayer for our friend, Nora, and her family. Nora has had many medical problems these past months and is now in the PICU at CHOP. She even got to have a helicopter ride to CHOP from Hunterdon Hospital on Halloween night - much to her delight (even though it was an emergency). She is scheduled for exploratory surgery tomorrow. Please pray that they will be able to find the problem and correct it. She and her family have been through so much over the years and an answer is greatly hoped for.

Hope you all had a Happy Halloween, too. Love to all.

Wednesday, October 5, 2005 5:13 AM CDT

Hi All,

Really not much to say right now. Things are very normal here - which is a very good thing.

Hope celebrated her 15th birthday (YEA!!!) on Sept. 17th. She & I took a train into NYC and went shopping in Soho for her birthday. It was a fun day & she picked up some cool clothes.

Hope's doing well in school. Struggles a bit with Algebra II Honors but is now getting additional tutoring. All her other classes seem to be going smoothly. Still has massive amounts of homework but she's learning to budget her time wisely now.

We took a quick little vacation with Aunt Connie up to Lake George, NY, this past weekend. The kids had off from school this past Monday & Tuesday. It was perfect fall weather, crisp & clear, and the scenery was just beautiful. Probably about a week early for all the leaves to change, but it was still very pretty.

Shortly before we left on Sunday, we were walking around Lake George when suddenly rescue boats started going out and sirens were everywhere. Sadly, we soon heard the news of a tour boat capsizing. It's been in all the news and papers here. We did not actually see it happen but we think we saw the boat head out prior to it capsizing. It was such a perfect boating day, it's hard to imagine anything so horrible could happen that fast. We are so sorry for the people on the tour boat and the families who lost their loved ones. They will remain in our thoughts & prayers.

As for Hope's medical stuff - she will have an MIBG (nuclear medicine) injection on Nov. 1st & then her MIBG scan on Nov. 2nd. Plus, a regular clinic appointment on the 2nd, too. We will fill you in on the results of her scan as soon as we hear ourselves - which is usually a few days up to a week after the scan.

Hope is getting ready to get on the bus and the boys are just waking up. Hope all is well with you, too.

Love to you all. PS: Happy Birthday to Uncle Tim! And Happy Anniversarys to Uncle Tim & Aunt Sonya and Uncle Russ & Aunt Sheri.

Thursday, September 15, 2005 5:22 AM CDT

Hi.

Sorry haven't updated in awhile. It's been a bit hectic the last week with the start of school and still trying to get additional needed school items - when most of the stores are out of them (pet peeve of mine - send the whole list home prior to the start of school, when the stores actually still have the 1", 1 1/2" binders, specific size paper, etc.)

Hope is now back to school full time! She seems to be enjoying it for the most part - except getting up at 6:00 a.m for the 7:00 bus. She was never a morning person.

She has Algebra II Honors, Media & Graphic Communications, US History, Chemistry Honors, Element of Literature & Composition II Honors (basically English)& Spanish III, Her gym will probably be with a physical therapist - but we're meeting with her today to assess Hope's condition first.

Otherwise, she's settling back into doing loads of homework (and I mean loads - 6 hours the other night!) and trying to figure out the massive new HS' hallways. (I was there the other day - it's very confusing and HUGE!)But she says that as long as she goes up the right staircases, she can find the halls with her classes.

She's happy to be back with friends the most.

As for CHOP, she'll have her next scans in early November. We're also sending back her pump and nighttime nutritional feeding equipment because she doesn't need it anymore - yea!!!

So, things here are good. We are grateful for each moment of it.

Hope things are good with you, too. Love to all.

Thursday, August 25, 2005 9:47 PM CDT

Hi.

Hope had her oncology appointment yesterday. Everything still seems very good. Her numbers are in the normal range or near-normal range. Plus, according to their scale, she gained 4 pounds from her visit in late-June. That means she gained 4 pounds ON HER OWN!!!! Not from the g-tube feedings since I stopped them July 1st. Yea!!!! She hasn't gained weight on her own in years. He also said we can start spacing the scans out from 3 months to 6 months. So, she won't have to have any scans for another 3 months. Of course, I'm a bit freaked out, but I'm told this is a very good thing. I just have to keep reminding myself of that.

Hope also had her first Endocrinology appointment today. The good thing is that the doctor she will be seeing in Endo is one who was doing her Residency rotations in Oncology when we were first there. So, she is very familiar with Hope already. She was actually the doctor who sent Hope to the PICU after Hope's stem cell transplant. Probably saving Hope's life in the process. Plus, she's just very sweet.

Hope had some more blood drawn for a hormone level reading & thyroid reading - which won't be back for about two weeks. She also had a bone age x-ray done. This is an x-ray of her left hand & wrist. It shows if her bones have finished growing or not. Due to Hope's low height, they were kind of hoping her bone age would show around 10 or 11 years old. It would give them a bigger window to work with to re-start her growth. Unfortunately, it showed 13 years old (Hope will be 15 in a few weeks). They were a little bummed but at least had a small window to work with.

They did mention growth hormone factor - a medicine to help with growth. The fear there is it may start to re-grow her tumor, too. Obviously something that we don't want. So, we will have to wait at least six months to see if her own body's hormones will kick back in or have they been shut off totally from the cancer treatments. In the meantime, the Endocrinologists and the Oncologists will discuss the best treatment options for Hope's future growth.

We went right from lots of heavy traffic (what should have been a little more than an hour ride home - took more than two hours) to a Girl Scout Leadership meeting. Hope will be the new Web Coordinator for our town's Girl Scouts. This will give her needed leadership hours for her Gold Award. We got home around 10. So, I'm ready for sleep.

On an aside: Happy Anniversary today to my sister Nancy & her husband Buster!

Love to all. - PS: School starts for us in two weeks. Two more weeks of summer!

Thursday, August 11, 2005 8:13 PM CDT

Hi All,

So sorry for the long delay. Truthfully, I think I just needed a break. As great as this tool (caringbridge)is to keep in touch with you all - it also is a daily reminder for us that Hope has (very, very small - thankfully)cancer. And after a wonderfully relaxing vacation where she was very much like her "old" self, it was hard to come home and have to go right to a CHOP nutrition appointment and be reminded. It's very easy to let yourself think everything is perfect on vacation.

Vacation was wonderful. We were in Naples, Florida for nearly the whole month of July. For John, it was a working vacation but for the kids and me, we pretty much swam and relaxed as much as possible. We were only about a block and a half from the Gulf. I'm not sure why more people don't vacation there in the summer (aside from the hurricanes). It was as hot as here but with easy access to the water, it was wonderful.

Our first week was spent sight-seeing and swimming. John and I had been there once before on a convention but the kids had not. We took an airboat ride in the Everglades (very cool), took the kids on jetskis for the first time and visited Sanibel Island for a day - renowned for it's beach of seashells - really amazing - they're everywhere.

Drove two hours back towards Tampa to see friends, too. That was a highlight of the trip for us. My friend Dawn lives in Colorado but was visiting her sister in Tampa. They both have children near our children's ages. We were able to just hang and have a very nice, long visit and get to know each other's children (who we know so well through emails but had never met in person). The 4 boys were the funniest. They did what boys their age do. They sat around playing Game Boy - all individually playing but sitting in a circle on the floor, talking about what game each was playing.

Connie & Danny moved to Bonita the second weekend we were there. The same day Hurricane Dennis moved in, too. After a 24 hour (plus 5 more for stopped dead traffic - with a dog and 3 cats in the car), they arrived in supposedly sunny Florida - just as the hurricane decided to brush that area. Luckily, by the time it came to this area, it had been down-graded from a level 4 to a level 2. Lots of wind and very heavy rain. Some local flooding but not too terrible.

Their house is very pretty in a newly built development. Has a nice swimming pool and a pretty little pond behind their house. Connie would take Teddy there for a walk - which Teddy loved - until a neighbor came over to introduce himself, say hi, and "by the way - there's an alligator in that pond". Needless to say, they had to find a new walking path.

The rest of the vacation was spent swimming, seeing some local sights, and hanging with Aunt Connie & Uncle Danny. The best part was seeing Hope return to being Hope. She didn't think she'd swim - due to her g-tube. But the weather was so hot, the water so inviting and gentle - she gave in finally and we could hardly get her out the rest of the time. Her appetite increased tenfold, too. To the point where I stopped giving her the g-tube nutrition at night. Haven't told her oncologist yet. But she gained two pounds while we were away.

Towards the end, we had some bad news. My mom's house had been hit by lightning and is pretty much destroyed. The upstairs is unfixable. The downstairs is waterlogged. Luckily, the firefighters saw my mom's photo albums when they first entered and threw a tarp over them. They were saved. I just thought that was so amazing of them to do that. My mom is okay but is heartbroken. She'd been there nearly 40 years. She's been put up in a furnished apartment but about 20 minutes from where she lived. My sister Susan sees her every day and my brother Michael had to return to NJ from Las Vegas for work and will be staying with her. So, she is thankfully not alone. Still waiting to hear from the accessors as to what will happen next.

On a little less bad note, our cat, Blossom, was hit by a car while we were away. Badly broken back leg. Our neighbor always seems to have to take care of our injured cats - it always seems to happen while we're away. She brought her to the vet. I spoke with the vet and we decided the best course was to amputate the leg. But Blossom's doing very well now. John wants to rename her "Tripod".

We had come home a little early from our vacation to be with my mom. But we're starting to resettle into being back home. Getting ready for school, CHOP, doctors' & dentist appointments and just normal stuff right now. Will probably see Hope's oncologist towards the end of August. Then school starts on Sept. 8th. With Hope going back to school, it will be the first time in 2 1/2 years that I will be alone again. I'm not looking forward to it. Have to start figuring out what to do with my life again.

Hope the summer has been wonderful for everyone.

Love to all. PS: New photos.

Tuesday, June 28, 2005 6:12 AM CDT

Hi.

Hope did very well at her Child Study Team evaluations yesterday. The psychologist was impressed with her vocabulary skills. She said Hope has a college level vocabulary and won't have much of a problem on the English part of the S.A.T's. (Reading a book a day definitely helps) She didn't grade the math yet, but Hope thought it was easy. So, apparently, there's no cognitive problems from all her treatments.

Then she met with the social worker for about an hour. I had met with him for an hour and a half while Hope was with the psychologist. Just went over her medical history, social and educational histories and what we're hoping for in the future for Hope.

They did note that things they said had to be repeated sometimes. Hope still doesn't want to wear her hearing aids, but understands she'll have to once she starts HS. There is the beginning of a noticeable slurring of her speech which we had at first attributed to her new braces, but now realize it's from her hearing loss. So, the sooner the better.

We're hoping to leave tonight for our vacation. Depends on when John can get home today. Will try to update while away. We're hoping to help Aunt Connie & Uncle Danny unpack and also see some friends we haven't seen for a very long time. Otherwise, no real plans - just to relax.

Hope you all have a relaxing and fun summer, too.

Love to all.

Wednesday, June 22, 2005 8:32 PM CDT

Hi.

The boys are now finished with school as of yesterday and Hope is technically finished but still has to take her Spanish II final tomorrow. Then she will be totally done. She is very much looking forward to it (the "being done" part, not the Spanish final).

I took her to her HS to pick up her yearbook yesterday. She was able to walk around and see friends and have them sign her's and she theirs. I know she'll fit back in to school next September but she does look so small next to the kids. She'll have to wear 2 or 3 inch heels. Truly, not that big a deal in the whole scheme of things.

We're trying to get set to go away in a week. Always so much to do before a vacation. By the time you leave, you really do need one. Did take a break, though, and went to see Madagascar tonight. Not as good as Finding Nemo but parts were very funny.

We're set to meet with the Child Study Team next Monday. Hope will meet with the school psychologist while I meet with the social worker for an hour and a half - then we'll switch for another hour and a half. Didn't realize it would be so intensive. Should be interesting - hopefully.

That's about all for now. Hope all is well with you & yours, too.

Love to all.

Wednesday, June 15, 2005 3:03 PM CDT

Hi,

Hope's MIBG scan results were good. The oncologist said they were the same, if not a hint better than the last one. Then he said we could come back to see him in 3 (THREE!)months - Yikes!!!! I know this is good - but I'd scan her every day if I could. So, we have the whole summer free.

We're planning on helping Aunt Connie & Uncle Danny unpack in Florida. And then visit friends and take it easy. The heat these last 10 days here has given us a little taste of what it will probably be like in Florida in the summer. Thank God for air-conditioning.

For now, there's not much else. Just end of the year school stuff. Hope will probably be meeting with the Child Study Team in 2 weeks for her health evaluation for next year's school year. They have been wonderfully helpful.

Hope everyone is enjoying their day.

Love to all.

Thursday, June 9, 2005 6:31 AM CDT

Hi,

Hope had her CHOP tests yesterday. She had an MIBG (radioactive) scan, EKG & ECHO (heart tests). We don't usually hear anything for a few days, but we ran into her oncologist yesterday and he said he'd call us as soon as they post the scans online. He did say that from her tests that were run 2 weeks ago, the urine marker for neuroblastoma was completely negative - very good news. For some reason, Hope used to not show the marker but seems to now.

Otherwise, we're just waiting for the end of school in 2 weeks for all of them. Next week will be a lot of ceremonies for Liam and Skyler since they will be moving on to the middle school next year. They had their band concert last night. We are always impressed with the quality of the music education here.

Hope still has lots of tutoring left and will be working on her final projects soon. She is more than ready for summer.

As for summer plans, we're hoping to finalize some as soon as we hear from the oncologist. We are hoping to go to Naples, Florida to help my sister, Connie and her husband move from Boston to Naples. Also, we'll be staying a couple weeks to just relax and hopefully visit friends. Not the best time to be in Florida, mid-summer, but the heat will give us a legitimate reason to just be lazy.

Love to all.

Saturday, May 28, 2005 8:44 PM CDT

Hi.

Hope's CHOP appointment went well. Her numbers remain in the normal or near-normal range. Her oncologist wanted her to have another battery of tests. I guess she'll have to have them done just about every 6 months right now. So, we had her eyes checked - new glasses forthcoming. We've also scheduled her EKG,ECHO and MIBG scan for 2 weeks from now. Will let you know how that goes when we hear.

Hope also gained nearly 5 more pounds - she's 68 pounds now! And we're pretty sure that's mostly just from what she's eating - not her nutritional feeds, as I've been cutting back on them (and hope to do so more in the future after a late June appointment with the nutritionist).

I had an appointment with her HS guidance counselor, supervisor, nurse and tutor about next year's academic and physical requirements. It went very well. The school system here has been wonderful to us! They're willing to make as many adjustments as possible for Hope to have a successful return to school. She'll be able to leave the classes 5 minutes early (like the kids who are on crutches, etc...), plus have books at home and school, so she won't have to carry heavy books around. There's also the possibility she can have physical therapy at the school - which would be wonderful for her. She's looking forward to returning - although I will terribly miss having her home all the time. I guess I'll have to make some adjustments, too.

We had a successful garage sale here today and yesterday. Liam and Skyler have been saving for a pool table for almost a year now. They helped me set up yesterday before school and then work it after school. They also worked it all day today. With what they have saved and the sale's tally, they now have enough for a "cheap" pool table. They're very excited.

We're looking forward to tomorrow's annual Bertel"son"s picnic (John's cousins are Bertelsons - we're Bertelsens).

Hoping everyone's Memorial Day weekend is memorable.

Love to all.

Saturday, May 21, 2005 9:08 PM CDT

Hi.

Yea, a quiet week coming up. It was a busy week last week and the week before, and we're all looking forward to it being a little quieter.

We do have Hope's CHOP appointment this week, though. Will let you know how that goes after we get the numbers.

I was supposed to go away this weekend with "the girls", but wound up with a bit of a stomach bug and just didn't feel well enough to go. They headed down to LBI (Long Beach Island) this year instead of Stone Harbor. Out of the 6 of us, only 3 actually made it. I hope they're all having a great, relaxing time. Hopefully, next year, we'll all be able to go. We always have such a good time.

So, instead of LBI, Hope and I went with our Girl Scout troop to our town's Health Fair today to do some service. It was very well attended. The funny part was that there was a busload of about 40 Asian senior citizens who came in. They had about 3 interpreters with them. Hope was working the BMI (Body Mass Index) machine and the few who spoke a little English gave her their height in metrics. Maybe next year, we'll have a conversion chart.

Tomorrow, we're hoping to go to Ronald McDonald House's Grand Opening in New Brunswick. They were so good to us, we want to repay them when we can.

To Aunt Helene and family - I can't believe Melissa is getting her Doctorate. I still picture her as a little girl. Please send her our best wishes and love. And Congratulations to Rick's son on his HS graduation.

That's about it for now. Hope everyone's weekend is as bright and sunny as our day was today.

Love to all.

Sunday, May 15, 2005 7:38 PM CDT

Hi.

Hope had a busy week. She had a big Spanish test on Thursday, then a History one on Friday. She did well on the Spanish but we won't know the History for a while. Her Geometry tutor just left a few minutes ago - it's 8:40 p.m. here now. Lots of homework, too.

We've set up a clinic appointment for two weeks from now. Otherwise, she is feeling well.

Skyler had braces and a palate expander put on his upper teeth on Wednesday. We didn't expect the palate expander and it caused him quite a bit of pain for about two days. This past weekend, he finally started to feel better. I also didn't know I'd have to turn the expander twice a day with a little key-thingy. The poor thing. I feel like I'm forever torturing my children. I know it's for good - but we sure have to go through a lot of bad stuff to get to the good.

Congratulations and God's blessings to our niece, Caitlin, who made her confirmation today. Happy Birthday to Grandma B. today, too.

That's about it for now. Another busy week coming up.

Love to all.

Monday, May 9, 2005 12:56 AM CDT

Hi.

Yea - a quiet day today.

We had a very successful rummage sale at the church last Friday and Saturday. Lots of people buying and the weather held out and stayed nice. It's always a lot of work but the end result is always worth it. A BIG Thank You to everyone who helped set-up, organize, work the sale and especially clean-up! Especially my sister, Susan, who drove an hour each way to help on Thursday, Friday & Saturday.

Hope is fine. Doing some homework right now. Her Spanish tutor will be here this afternoon and her Geometry tutor this evening. They're all trying to squeeze in as much time now as possible before the end of the school year at the end of June.

Not too much medical-wise right now - Thank God! We have to book a regular clinic appointment with CHOP soon, but have to wait until Hope's oncologist gets his new schedule since he is now advancing from Fellow to Attending Physician - yea!!!! For us, it means we only have to see him now and not have him examine Hope and then go get an Attending Physician to back-up his diagnosis. For him, hopefully it means great success.

Hope's physical therapy has stopped for now while we work out some insurance issues. Always a joy. I've been trying to take her as a guest to the gym, but I've been told we're only allowed 3 visitor passes per month. Might consider having her join the gym now. The physical therapy was a huge help to her and I'd hate to stop and have her slide back.

Hope all the mothers had wonderful Mother's Days. Ours was very nice. My mom, sisters Sue & Connie, and brother-in-law Danny were here. We had a quiet afternoon at home (mostly due to Skyler's migraine - but after a long nap he felt better). We had a long game of Scrabble and Liam came very close to beating Hope for the first time. And he was playing all by himself. We were impressed.

That's about it for now. It'll be a pretty quiet week. Just regular tutoring, chores and Girl Scout stuff.

Love to all.

Monday, May 2, 2005 11:02 AM CDT

Hi,

Yesterday, May 1st, (what I consider our own personal "May Day, May Day!!!") was 2 years since Hope was first diagnosed. It seemes almost like it was another lifetime ago. It still seems very surreal to us sometimes - like it was all just a bad nightmare.

We didn't really acknowledge it much yesterday. Instead, after church and Geometry tutoring, Hope and I went to a bead show at the Edison Convention Center. Absolutely one of the best ways Hope can spend her day. It's just such a pretty sight to see - thousands and thousands of beads all laid out in little boxes, or tubes, or draped over shelves. Very dazzling and just too hard to limit yourself.

We just finished dying Hope's hair pink - from the blue it was before. It came out great. We'll try to get some pictures up on the site soon.

Well, we're off to the gym and library. We're trying to fit in as much today and tomorrow as we have a very busy week ahead. The boys have their 5th grade Ellis Island trip on Wednesday and Thursday and our church (Harlingen Reformed at the corner of 206 South and Dutchtown-Harlingen in Montgomery) has their Rummage Sale this Friday, 9 - 5 & Sat., 8 - 2, in case anyone is interested.

Hope you all have a great week and an early "Happy Mother's Day" to my mom & John's mom and all the other fabulous, wonderful and stupendous mothers out there.

Love to all.

Wednesday, April 27, 2005 3:02 PM CDT

Hi,

Hope got her top braces today! Finally! She had started the spacing procedure before she was diagnosed two years ago, then the braces were put on hold. Now, it feels like a normal rite of passage - something not as dreaded as before. She'll go back in about 8 weeks for tightening and they said it'll be about 3 months before her eye teeth move into the spaces left by the pulled teeth. Something she's very much looking forward to.

Skyler also had molds of his teeth taken today. He'll get his braces on in 2 weeks. Liam, luckily, doesn't seem to need them just yet.

Sorry haven't written in a while. It's been pretty quiet and normal here. Regular day to day stuff. It's amazing how grateful you can be for routine things.

Hope and I are very much looking forward to a Scrapbooking Convention this Friday and Saturday. We'll probably go on Friday and then we're supposed to meet Aunt Amy & cousin Maya on Saturday and have a "girls' day out" at the Convention.

Hope everyone's weekend is what they want it to be.

Love to all.

Sunday, April 17, 2005 6:06 PM CDT

Hi.

It's been a busy week.

Hope had two (not 3 like they initially thought) teeth pulled on Monday. They didn't have to cut into the gum, either. So, it was over and done with in about 20 minutes. She was very sore on Monday but started to feel better on Tuesday. She has a check-up tomorrow there and then they'll start her braces in 2 weeks.

She will also start receiving her immunizations again tomorrow. Due to the stem-cell transplant in January 2004, Hope's immunizations that she received as a baby were wiped out. So, she has to have them all again. She won't be able to have any live viruses, though, yet. No MMR or Chicken pox vaccines. Not sure when that will be allowed. She'll have to go back in 4 weeks for the second round and then in 6 months for the last round.

Hope's check-up on Wednesday went well. Her numbers remain in the normal or near normal range. They don't want to do any scans either for awhile. So, we don't have to go back to CHOP for another 6 - 8 weeks. Yea!!! Plus, she gained 2-1/2 pounds!

Her physical therapy is going very well. She finished her first round of 60 days and had her 2nd evaluation. They found her to be stronger than before (not in the normal range yet but much, much better than before she started). Her therapist really pushed her that day. Her poor legs were very sore all weekend.

Yesterday we went to a St. Baldrick's event. That's an event where "shavees" have their heads shaved bald to raise money for the St. Baldrick's foundation. They then donate all their money to CureSearch - an organization that raises money for research for childhood cancers and lobbies Congress for more awareness. We want to thank the Landis family for inviting us back to speak to the group gathered. Initially, I was supposed to speak but the MC didn't know that and put the microphone in front of Hope - who did a great job of winging it. She can be very eloquent.

This event in Pennington started last year with one 11-year old boy - Chris Landis. He found out about the St. Baldrick's foundation (check into it on the web - it was started by a bunch of guys who normally spent St. Patrick's day celebrating in a pub - but wanted to do something more). He convinced his parents to let him shave his head. What an amazing boy. His father even got talked into it last year.

This year - there were originally 17 "shavees" - Chris, his friends (all 6th graders - how amazing are they?!) and a group of 7 teachers from the Hopewell Valley High School (what an example they are for their students). Plus, there were "walk-ins" - people who heard about the event and walked in to participate, too. The final number was 22 "shavees". They raised over $8,000.00. Absolutely wonderful!

The most emotional, though, for us was Chris' 9 year old sister who really wanted to be a shavee, too. She told her parents months ago when they started planning. They weren't too keen on the idea. But when everyone was getting their head shaved yesterday - she convinced them she really wanted to do this, too. She wanted to show that it wasn't only boys or men who can have their heads shaved and show their solidarity to sick children. So, how could her parents refuse such an amazing sentiment from such a caring 9 year old. Although the parents were visibly nervous - their very strong 9 year old daughter sat there and let them shave her long locks. It was very moving for me. We'll have pictures on this site soon.

Back to our regular Sunday night routine here now. Hope's with her Geometry tutor and John's out in the backyard hitting golf balls. The boys are lounging and I'm putzing around.

Hope you all have a great week. It's supposed to be absolutely gorgeous here.

Love to all.
New pictures!

Sunday, April 10, 2005 4:20 PM CDT

Hi,

It's been a quiet but nice week.

We just came back from a fun bowling fundraiser in Willow Grove, Pa. It's called the "Gia Nicole Angel Fund" and helps support families of ill or physically disabled children. Hope was one of it's recipients last year.

This was their 4th annual fundraiser and we all had a good time. They had a silent auction, door prizes, clowns, raffles, chinese auction and lots of food, music and even guest appearances from members of a professional women's soccer team. It was very well done and we thank Amy, Gia and her committee for inviting us and for their continued big heartedness. Plus, we won the big chocolate basket! Can't get much better.

Tomorrow is Hope's oral surgery. CHOP clinic on Wednesday - just a check-up. They'll probably schedule scans the following month. I spoke with her oncologist the other day. He had just returned from the COG (Children's Oncology Group) conference in CA. He said there seemed to be some new neuroblastoma studies coming that looked promising. Always good news - for us and for others.

BTW: Hope had her hair highlighted blue again. Back to being her artistic self.

Hope you're all enjoying as beautiful a weekend as we are.

Love to all.

Friday, April 1, 2005 9:07 PM CST

Hi,

Still quiet here. We decided not to do too much during Spring Break. Hope still had a bit of her cold and the rest of us were just tired.

We did get to go to NYC on Wednesday and took in the Ringling Brothers Circus at Madison Square Garden. It's not how I remembered it. I remember there was always something going on in all 3 rings. Now, they just occasionally do that. It was still a fun thing for the kids to see. Plus, they had never been to Madison Square Garden before.

Next week will just be more of Physical therapy and tutoring. Then, the following Monday, Hope will have 3 of her teeth pulled. Plus, clinic check-up at CHOP that Wednesday.

Hope everyone who has Spring Break is enjoying it. And the rest of you have a good (hopefully not flooded)weekend.

Love to all.

Saturday, March 26, 2005 1:51 PM CST

Hi,

Quiet week here. Hope still has a cold. It started to go away last weekend but then decided to come back with a vengeance on Monday.

Just regular, good ol' boring stuff here.

Just wanted to wish everyone a Happy Easter and relaxing Spring Break.

Love to all.

Friday, March 18, 2005 11:14 AM CST

Sorry to those who tried to access the past few days - we had some technical difficulties that we've now resolved. Also, see new pics.


Hi,

I've been down with a nasty head cold since Monday. This is the first day I've gotten out of bed. Now Hope has it. But no fever, thankfully. So, we are happy with just a normal cold.

John has been doing double-duty with working and taking care of me and the kids. So, when I came down today, he was out the door to hit some golf balls. But he deserves it. The house was actually decently clean, too. Very impressed and thankful.

Hope had her first consult with the oral surgeon to have some teeth removed and start the process for braces. Her physical therapy has been helping her regain some leg strength. She still has a long way to go, but it's definitely helping.

Had a fun day on Liam and Skyler's 11th birthday last Saturday. We caught "The Big Apple Circus" that was nearby in the afternoon. Later that night, we went to the Sovereign Bank Arena in Trenton to see the Harlem Globetrotters. We had bought the tickets months ago and they were each allowed to invite a couple of friends. It was a lot of fun to see the boys' laughter as much as it was to see the Harlem Globetrotters. All in all, a birthday to remember.

Hope you all have a great weekend. Love to all.
Happy Spring!

Friday, March 11, 2005 2:48 PM CST

Hi,

Just a normal, good ol' boring week here. Physical therapy, tutoring, chores, etc...

Spoke with the oncologist today. I asked him about the word "signal" and he said the MIBG is still picking up something very small but it is less "light" than the last scan. Which means it is less dense. So, there is still something very tiny there but it keeps getting smaller. Which the doctor says is "great!".

That's why we couldn't say Hope was in remission yet. Although the radiologists said there was no sign of any neuroblastoma, the oncologists had a very hard time believing that. Since MIBG medicine gets picked up in certain organs, too, they weren't exactly sure what they were seeing last time. They feel more certain with this scan.

So, in the meantime, we just keep on, keeping on. They will continue with MIBG scans every 6 - 8 weeks and follow it.

We are grateful for any bit of good news we receive. Thanks to everyone, again, for all your kind wishes, good thoughts and prayers for Hope. They are more than appreciated.

Have a great weekend. Love to all.

PS: Happy 11th birthday to Liam & Skyler tomorrow 3/12!

Friday, March 4, 2005 2:43 PM CST

Hi.

Well, folks, still "GOOD NEWS!!!!"

I screwed up (again) and missed the oncologist's phone message on Wed. I left some messages later that day and the next. John was able to retrieve the doctor's message and it said he was going away on a conference for the rest of the week. That's why we were waiting (it's usually one of his first reasons to not return phone calls - he's usually very, very good about it).

SO, his message said the MIBG scan looked even a little better than last time - yea!!!! Although, there was still some "signal" - not really sure what that is and haven't been able to speak with him yet. My guess is, it's still showing trace amounts maybe - just really not sure. Will have to fill you all in when we find out hopefully early next week. He did say he wanted to speak with me about that.

Now we feel we can breathe easier this weekend. Sometimes, it just feels like you're holding your breath each day, dreading the phone ringing but desperate for it at the same time. Weird.

Now we can start planning for Spring Break vacation - yea!!!!

Hope your weekend is all "good news", too.

Love to all.

Thursday, March 3, 2005 6:30 PM CST

Hi.

STILL waiting to hear about Hope's MIBG scan. Left a couple of messages. Will call again tomorrow. I really hope to hear something soon. The waiting is maddening.

All's quiet and calm here. EXCEPT it looks like our oil heater decided to spring a leak. John's on his way to Lowe's to get a pump to get the oil out of the sump pump area, while we wait for the Oil Company to show up sometime tonight (hopefully sometime before midnight). Typical night at the Bertelsen household.

Love to all.

Monday, February 28, 2005 8:40 PM CST

Hi.

Big day today. Hope had her broviac (central line) removed today!!! She finally had a procedure that went smoothly and totally as planned.

We were to be at CHOP today at 9 a.m. She was originally scheduled to be the 3rd child, but wound up being the 2nd due to the 3rd child not arriving in time.

They took her in at 10:30 and removed the line and exchanged the GI "button" for a new, non-defective one, all while she was under anesthesia. Yea!!!

They wheeled her out at about 10:50 and put her in the Day Hospital until she started to wake up from the light anesthesia.

She actually walked out on her own two feet by 11:50. I'm always so amazed by that, since I have problems waking up from anesthesia.

We even beat the snow home for the second time. Again, the weathermen were right on about the timing of the snow in Philly. I was on the phone with John at 10:50 and telling him it wasn't snowing yet, but they had called for it to start around 11:00 a.m. I looked out the window at 11 and sure enough, the snow was swirling everywhere.

Haven't heard yet about her scan. Getting a little anxious. Hopefully tomorrow.

We decided yesterday to go to Point Pleasant to walk the boardwalk before Hope had her procedure. We didn't realize that most of the games still operate in the winter. It was quite busy for a February day. We were able to play a bunch of games and take in the small but very nice Aquarium.

Unfortunately, we missed seeing the Polar Bear Plunge by about 2 hours. Read in the paper today that there were about 3,000 participants and they raised nearly $500,000 for the Special Olympics. We did get to see some groups still walking around in bathing suits and bathrobes. They said the water temperature was 39 degrees - brrrrr. Brave and compassionate people.

And as always, for a Bertelsen family outing, one of the kids got sick (Skyler). He slept all the way home, then from the time we got home (6:30) and through the night. At 12:30 a.m., Liam decided to join him (in spectacular fashion). So, they were both home today. Skyler is now much better and Liam is still recovering. I'm starting to think they need to shut the school and fumigate it. Been a tough winter for those two.

Well, we're celebrating in our own quiet way here. Hope is reading, the boys are recovering and we're watching "Who's Line is it Anyway". Always good to the end the day laughing.

Love to all.

Thursday, February 24, 2005 6:26 PM CST

Hi.

Hope had her MIBG (nuclear med) injection yesterday and her clinic appointment. The two oncologists felt that Hope's recent, recurring lower back pain is more muscular than a return of cancer. She may even have a small hairline fracture of a verterbrae or her tailbone. Possibly due to a slip on the stairs or just the chemo making the bones more susceptible.

Before they ordered an additional x-ray, though, they wanted to wait to see today's MIBG scan. We were able to make it in earlier than originally scheduled and beat most of the snow home. We packed a bag, just in case.

Usually, the oncologist will call on the Friday or Monday following the scan. So, hopefully, we'll hear something soon.

Hope is still scheduled for her central line (broviac) removal on Monday, 2/28. But, of course, more snow is expected on Monday. Maybe we'll go in Sunday evening.

Skyler is sick again with a stomach bug. Around 3:30 this morning, I heard "Mom, Mom!!!" I jumped out of bed and ran to Hope's room. She was sound asleep but I woke her up and asked, "What's wrong?". She's said, "What?!". Then I realized I ran right past the boys' room. Poor boys. He's been laying quiet all day.

Otherwise, all normal stuff here. Nice, quiet night with lots of snow falling.

Love to all.

Friday, February 18, 2005 11:59 AM CST

Hi.

The kids have off from school Thursday - Monday. We decided to go into NYC yesterday and see "The Gates" in Central Park. It was a crisp, clear day with little wind -perfect for viewing the "saffron" (not orange) drapes of cloth over 23 miles of the park. It really was a sight to see. We really enjoyed it.

Also, caught a small Broadway preview of "Lazer Vaudeville" on 42nd street last night. It was mostly a juggling show with 3 lead actors in the vaudeville style of quick skits. Mostly all done under black light, so that everything they juggled glowed neon. The 3 actors were funny, graceful & fun to watch. They even gave the audience 3 neon handkerchiefs in the beginning and tried to teach us how to juggle. The boys loved it and John, Hope and I said it was a fun, family show. Not sure if it was worth the Broadway price (even at preview prices) - but still a fun night. We even got to have a late-night dessert with Uncle Phil in NYC.

As for Hope's medical stuff: we are getting a little disappointed with her new GI doctor. At first, she seemed very interested in Hope's malnutrition problems. We've since seen her twice and she doesn't seem very interested anymore. We're back doing the same thing we've done twice before - try a dairy-free diet to see if it helps. Hope is not happy. But we'll try again.

Got a call from Hope's homecare company yesterday telling us that RWJ said she wasn't even seen there the day before. Now I just a got a call from a different nutritionist at RWJ trying to figure out why the homecare company needs a prescription for what they ordered. It gets very exhausting doing this go-around constantly and unfortunately, I got a bit snippy with her. Poor thing, she was just filling-in for the regular nutritionist.

Hope is due at CHOP this Thursday for an MIBG scan. And then the big day - Monday, 2/28 she is scheduled to have her central line removed!!!! She's not very happy about it but it does signify good things. We'll let you know how it all goes.

Hope everyone enjoys their weekend. Love to all.

Friday, February 11, 2005 11:11 AM CST

Hi,

Just want to tell people that our friend, Kathy Martin, has been designated the Nations Volunteer of the Day today for the National Points of Light Foundation. Check out www.pointsoflight.org.

I'm going out to pick up the Princeton Packet, too. There's supposed to be an article about her. If it's in today's paper, we'll put a link up to it.

No one deserves it more. We will always, always be grateful to all Kathy did for us and for Hope. There will never be the right words or gestures to thank her for helping us try to save our child's life. We are just so happy she is being recognized for her selfless spirit.

Our thanks, too, to Karen Fortgang for initiating this nomination or else we would not have known about it.

Quick note: Liam's fever finally broke today. He & Skyler are still sick but it feels like there's light at the end of the tunnel now.

Love to all.

Tuesday, February 8, 2005 6:24 AM CST

Hi.

Love everyone's comments on how good it is that things are boring. We will never take that for granted again.

Wish things were boring for Liam and Skyler, but the poor things have very high fevers, coughing and stuffy heads. Liam since Saturday and Skyler since Sunday. The fevers have gone as high as 105. Thank goodness for Children's Advil.

Not sure if it's the flu since all of us have had the flu shot. Luckily, Hope had her shot mid-January. I don't really think it is. Skyler and Hope have had the flu in the past and I remember they could barely move. They slept all the time and ate nothing. Maybe it's just a long virus or a milder case of the flu.

We're just hoping Hope doesn't come down with it. Any fever of 101 or higher will send her into the hospital for 5 - 10 days for IV antibiotics, due to her spleen being removed during her surgery last year. This will be something she will have to do for the rest of her life.

Hope will have an upcoming GI appointment in mid-February and an MIBG scan at the end of Feb. It has been discovered she has a moderate allergy to dairy (not a good thing, she can't live without cheese and she is not a fan of the soy versions). Unfortunately, the formula she is on at night is dairy-based. They will decide what to do when we see them. We're also still waiting for a call about her line removal. I keep checking in with CHOP, but she hasn't been put on the schedule.

Hope will also start Physical Therapy today. We were hoping to start last week, but couldn't get an appointment. She's looking forward to it.

Otherwise, things here are normal and boring. A very good thing. Hope things with you are normal and boring, too.

Love to all.

Thursday, February 3, 2005 10:44 AM CST

Hi,

Just good ol' regular stuff happening here.

Hope's homework is picking up and they're in the midst of mid-terms. We'll be adding a different Physics tutor next week to the rotation of other tutors. There will now be 4 home tutors.

Grandma, Aunt Sue, Aunt Connie & Teddy just walked in. Will update later.

Love to all.

Monday, January 24, 2005 9:31 AM CST

Hi.

We're enjoying our first snow day of the year. For those not on the east coast, we had a real good ol' Nor'easter. Thankfully, it happened on a weekend. The snow started coming around noon on Saturday and didn't stop until around noon on Sunday. The boys were out playing in it and measured the backyard at 15 inches. I'll have to hand it to the weather forecasters this time -they called for 15 inches for central Jersey and they were dead on.

For the first time since I've been at church, it was cancelled. And I do have to say, he made the right call. Since we live right across the street from the church, I think it may have been me, the kids and the pastor there. The wind gusts were blowing the snow everywhere. We live in the Sourland Mountains region (not like Colorado at all, but still pretty hilly) and the roads were pretty icy up there. I'd guess that's why school was cancelled today. We can see the main highway from our house and the cars are moving very well, but my guess is that since they were spending lots of time on the main and secondary roads, the higher elevations probably still needed to be cleared.

Hope's clinic appointment last Wed. went fine. Just the normal blood tests and check-up. He said that by the next appointment in mid-February, they can start giving Hope her immunizations. She was able to receive her flu shot, though, which makes me breathe a little easier since she usually came down with the flu when she didn't have a shot.
Plus, we should hopefully hear soon from the Nurse Practitioner about when they can set up an appointment to remove Hope's central line.

They also said Hope can start doing a few more things. Like ice skating, roller skating, etc... as long as she wears a helmet. I'm not sure she really has the stamina for those things yet, but we're happy she can start doing some of the things she really enjoyed. I'm also going to start looking into some physical therapy for her at a local health club. I think that will help a lot.

Nutrition-wise, she's doing okay. Her appetite is slowly improving. She on a big pistachio kick right now. Anything salty. It even seems she may have put on a pound or two on her own. We'll see the GI doctor mid-Feb. back at RWJ Hospital. She still has a long, long way to go but, hopefully, things may be heading in the right direction.

Hope everyone here is enjoying their snow day and everyone else is having a great day.

Love to all.

Sunday, January 16, 2005 8:15 AM CST

Hi.

"Wicked" was amazing!!!! It told the story of the Wicked Witch of the West and Glinda the Good Witch when they were college roommates. It was a fun twist on the story we all know. If you get a chance, this is a fun show to see, although tickets are supposedly hard to get right now due to it's popularity.

We were able to also go backstage for a tour. One of the characters in the play was a friend of a friend of Aunt Anne's. His name was Sean and he was so generous with his time. He must have showed us around the backstage for more than an hour.

It was all very interesting and exciting to see how props are moved and stored. The rows and rows of costumes and how they keep them all straight since there are so many costume changes. The make-up stations and their holiday decorating contests on who can best outdo the other stations. And just so much more... One of Sean's costume coats was 35 pounds alone! It's pretty amazing to see all the intricate costumes and high-heeled shoes up close and then to realize that the actors still have to dance in them. But my favorite thing to see was a door signed by many, many Broadway stars who have passed through the Gershwin Theatre. What a piece of history that is.

Otherwise, all things are still good and normal here. Hope has a clinic check-up this Wednesday at CHOP. They'll probably just do a normal check-up and then order scans to be done in the near future. Hopefully, they'll also decide when Hope's central line can be removed. This is a huge step in the treatment process. It really signifies that the treatment part is over. Something that is still hard to believe sometimes.

We're off to church. Love to all.

Tuesday, January 11, 2005 10:22 AM CST

Hi.

Yes, no news is good news. Things here are as normal as they can be - which is a very good thing!

Hope and I will be going with her cousin, Caitlin and Aunt Anne to see the Broadway show "Wicked" tomorrow. Hope really wanted to see this show and Aunt Anne was able to get tickets. There's even a slight possibility we can get backstage afterwards, but this isn't definite. Either way, it's a day in NYC - our favorite thing to do.

It's been regular day to day stuff here. Lots of make up tutoring sessions. Hope's Geometry tutor will be here 4 times this week, as opposed to the usual one day a week. She's been inundated with homework - but we wanted normal and that's normal.

We've had some friends and family members have some serious health issues arise in the last couple of weeks. One being my 7 year old great-nephew, Everett. Please say some extra prayers for these good people. As we've all seen with Hope, prayer is powerful. There are proven studies showing that patients who don't even know people are praying for them do better treatment-wise than people who don't have prayers. We will always be grateful for the thousands of prayers said and still being said for Hope.

Our prayers also go out to all the people in the tsunami-stricken areas and now, to the California residents being pummeled with rains.

I'm sure, though, that as in our time of crisis, people will help in any way they can. So many people are so good.

Love to all.

Thursday, December 30, 2004 4:21 PM CST

Hi.

We've been away for 3 days at Hershey Lodge, Hershey, PA. We decided that the best way we could celebrate Hope's good news was to eat as much chocolate as possible. For those who know how much I love chocolate, let me tell you - it's not easy. But it was a blast trying.

We had a very nice time being away for a few days. Went to Chocolate World, Sweet Lights display (like PNC Arts Center lights), Candy Lane in Hershey Park (lots of lights and pay-as-you-go rides), a fancy dinner at Hershey Hotel and a Hershey Bears minor league ice hockey game (where Pat Sajak happened to be, too). The best part of the trip for all of us was going to Indian Echo Caverns about 3 miles from Hershey. Aside from the many, many steps that were difficult for Hope (but she did it - sure & steady) it was a very cool thing to see. We all agreed it was our favorite thing. Plus, we just relaxed - another favorite thing.

Christmas was wonderful. Lots of people at John's brother's house on Christmas night. And lots of good food. Tons of desserts. The kids (and adult kids) had a blast playing some of the new board games.

Sunday we spent hosting Christmas here with my family. It was a little more low key but still wonderful. Again, good food and good company. Great seeing my sister, Nancy and brother-in-law, Buster. I'm just sorry we didn't get to spend more time with them while they were here for the week. We took them to Lahaska's Peddler's Village to see the lights and do a little after-Christmas shopping. It started to lightly snow. It was picture-perfect.

Looking forward to a Happy & Healthy New Year for all our friends and family, and especially for Hope! Hope all your resolutions happen just the way you want.

Love to all!

See link below to an article in the Princeton Packet on Hope's progress.

Thursday, December 23, 2004 9:07 PM CST

Hi.

We're counting down the minutes now until Christmas morning! The kids are so excited this year, especially Hope.

We'll have a busy three days. Lots of baking tomorrow and then church for Christmas Eve service. One of our favorite traditions.

Christmas morning will be spent here with our Christmas morning routine. Stockings, cinnamon rolls and then presents.

We'll be heading to John's family for Christmas afternoon and dinner.

Sunday we'll celebrate here with my family. My sister and brother-in-law from Arkansas are now here in NJ. It'll be extra-special this year for many reasons.

Hope just asked again for the umpteenth time since Thanksgiving, "Is is Christmas yet?!!!!"

It will be a fun Christmas this year. Hope yours is fun and memorable, too.

God's love and blessings to you all.

Friday, December 17, 2004 6:31 PM CST

Hi.

Still all good here. Hope it's all good where you are, too.

Been a busy week getting ready for Christmas. Buying, wrapping and hiding presents. Still cleaning, too - never ending.

Just good ol' NORMAL stuff here. We are very thankful.

Love to all.

Monday, December 13, 2004 3:16 PM CST

Hi.

Nothing new medical-wise. A very good thing.

Just fun things to report.

Hope found out today that she won 2nd place in the Courier News (local newspaper) "What Christmas means to me" essay contest. This was out of 6,000 entries! She won $75.00. It will be in this Sunday's Courier news. I'm happy for her because she struggled on how to do this essay in 50 words or less. Hope is like me - 50 words is just her first 3 sentences.

We have been busy decorating the inside of the house for Christmas. Since we didn't get to do so last year, we're going a little overboard this year.

Picked out our tree at a local tree-cutting farm. Never did that before. It was heavy! Plus when we set it up it was much too big for our living room. Had to cut it down a bit. The kids decorated it on Saturday.

We went to Lahaska, PA - "Peddler's Village" to see the village decorated in lights. It was really pretty. If you've never done this before, it's worth the trip.

Other than that, just day to day stuff. Chores, tutoring, etc... People have been asking Hope if she's going back to school. She won't be at least until February since she cannot get her immunizations back before then. Then she'll probably start slow, with one or two classes and still be tutored at home. She's been enjoying the tutoring since you can get so much done in 2 hours. Plus, we have been lucky to have terrific tutors. Her Spanish tutor should be here in a few minutes.

Love to all.

Wednesday, December 8, 2004 8:36 PM CST

Hi.

Hope's CHOP appointment went well. Her blood counts are good and it doesn't look like she'll need any more transfusions.

We talked about doing an MIBG scan or CT scan every couple of months, to keep an eye on things. They'd like to see Hope once a month now for a clinic check-up and then after a few months, switch to once every 3 months.

I know this is a good thing, but makes me crazy-nervous. This seems to be the normal reaction, though, for parents.

After the holidays, they'll probably pull out Hope's broviac line. This is the central line implanted in Hope's chest at the beginning of all the treatments. It runs right into her artery and allowed the nurses and doctors to take blood and give her medicines and chemos without sticking her with a needle each and every time. This is a very good thing, but will mean that each time she has blood tests or any other tests, she'll need to be stuck or given an IV. I know she'll get used to it in the long term, but it still is not fun.

Still working on GI issues but that will be a long-term thing.

So for now, we are hospital-free for a month. Yea!!!!!!!

Love to all.
PS: To Jaclyn Petrow. It was great to see you today at CHOP. You look wonderful! You're a real inspiration to us. Hope you have the best Christmas.

Sunday, December 5, 2004 8:11 AM CST

Hi.

Not much new here. Hope's GI appointment went okay. Same ol', same ol'. Have to start the process all over again - food diary, same blood tests, Pepcid, other non-invasive tests... It's frustrating to have to do this again and again for Hope, but we have to figure out why she has such problems with weight gain and maintaining her weight.

Not much else going on. Just normal day to day stuff. John and the boys went on an overnight trip to a Space Camp type of place. Should be home in about an hour. Hope and I had the house to ourselves last night. Watched a lot of HGTV and read. A thrilling night at the Bertelsen household.

CHOP appointment this Wed. at 2:00. Not sure what they'll talk about. Should be an interesting appointment.

Love to all.

Tuesday, November 30, 2004 6:37 PM CST

Hi.

We've (meaning I and then forcing it on everyone else) been in cleaning frenzy mode since last week. We hosted Thanksgiving here at our house on Sunday for my family. Even though I know they wouldn't care how our house looks, it gives me an excuse to do some heavy duty cleaning.

Since we've had our wall broken through, there was lots of settled dust on everything - walls, furniture, floors, windows, etc... Although the construction worker was great about cleaning everything because of Hope, (he would stop often and vacuum and sponge) there still was dust that settled later.

Hope has her first GI appointment at RWJ Hospital tomorrow. We will be starting the whole process over again for the umpteenth time, but hopefully they'll figure something out this time. At least they seem interested. At the other hospitals she seemed to be just a number. Not their fault. There are only so many GI pediatric specialists for the multitudes of children with GI problems. We're hoping for a little more personal attention this time.

She's been feeling very well. Her appetite is slowly, slowly improving. And she can make it up the stairs now without stopping. She's trying hard to push herself to get stronger. She's not ready for sprints yet, but maybe someday.

In the meantime, we're cleaning up from Thanksgiving decorating and pulling out all the Christmas decorations. We'll also be hosting here the day after Christmas for my family. Hope is really looking forward to it, since last Christmas she was still hallucinating and in Sloan-Kettering. Plus, my sister and brother-in-law will be coming in from Arkansas. We haven't seen them for awhile - so it will be an extra-special Christmas all around for us.

Next week Hope will have a regular scheduled Clinic appointment at CHOP. It will be the first time we've seen the doctors since they told us the GREAT news (as the Arnolds say - and it's true). Will fill you in on any new developments as soon as we hear.

Love to all.

Wednesday, November 24, 2004 3:44 PM CST

Hi.

Just wanted to wish everyone a blessed and Happy Thanksgiving.

We will literally be "over the river and through the woods to Grandmother's house we go..." tomorrow. Looking forward to being with John's family and the kids are always happy to hang with their cousins. Very different than last year, when we were in the hospital with Hope and her terribly painful case of shingles

Sunday we will host here at home for my family. Aunt Connie and Uncle Danny are coming in from Boston area. Liam, Skyler and Hope are really looking forward to seeing Teddy (oops - Connie & Danny, too).

If you haven't read our GOOD NEWS yet, please check the last entry. Thank you for all your kind words and prayers. We have learned from all of this that we are very truly a blessed family.

Love to all.

Friday, November 19, 2004 4:00 PM CST

Hi.

We received VERY, VERY good news today! Almost too afraid to put it in writing.

Hope's oncologist called today to say that the team of oncologists have been reviewing Hope's MIBG scan all week and feel there is a very good chance ALL of Hope's cancer is gone. The radiologists don't see any cancer. The oncologists think they may see a small spot in her chest still but her abdomen is free of cancer. We have to be cautious to say she's in remission but it is SO, SO, SO much better than it was 6 weeks ago. Being that we (John and I) are very gun-shy, we are being cautious. We are very excited, though, and Hope is literally bouncing off the walls.

I asked him if we should re-scan Hope, but he said they had thought that, too - until her urine test came back normal for the first time. It was a good sign.

I told the doctor I was waiting for a "but..." but he said it wasn't an "oncology but..." just a "nutrition but..." We have a Dec. 1st GI appointment at RWJ Hospital to start the malabsorption probe again. We have a CHOP clinic appointment mid-Dec.

Then he said we could start scanning Hope every 3 months possibly instead of every 6 weeks. Like all parents of children who are not in current treatment, I was very nervous about not checking it. I would like it checked every day if we could. But, obviously, not good for Hope physically or mentally.

They will be holding off on all treatments for now. There is no reason to give her heavy duty medicines if it's not needed. They want to give Hope's body more time to get stronger and feel better. And more time to see how the cancer reacts.

What hit me later, is that 15 years ago to the day we lost our triplets. I really feel there is some reason for this coincidence in dates.

As Pastor Bill said, and we surely feel, it's a miracle! We are so grateful to all of you for your prayers and continuing good wishes for Hope's health. Please know you have done something very good in this child's life.

We are going out to celebrate - not sure how yet - but we'll figure out something. How do you celebrate something this big?!

Love to all!!!!


See new photos.

Wednesday, November 17, 2004 7:22 AM CST

Hi.

There's not a lot of news right now.

Haven't heard back from the team of doctors yet. But they do that sometimes when they're still debating the next treatment plan.

I'm giving Hope a break from clinic this week. Didn't okay it with the doctors but I'm pretty sure it's fine. I had forgotten to mention that her red blood count last week stayed the same as the week before - 10.1 - yea! Didn't go down. And her platelet count took a good jump up from 67 to 101 - which is near normal. I can usually tell when Hope is getting low on red blood. She becomes very pale and very lethargic. She's still bopping around this week and all cylinders are firing - homework wise. You should have seen the stack of books she took out from the library this week.

So, we're just doing normal stuff. Also, having a wall in our home broken through this week. We'll finally be able to use our formal living room. It was always separated from the rest of the house. It was basically being used as a big storage area. There's now a 6 foot wide open door space between that room and our small family room. We're very excited. He (husband of a friend and nice man) should hopefully finish most of it by Friday.

Hope everyone has a great day. Love to all.

Saturday, November 13, 2004 9:20 PM CST

Hi.

Thursday was Hope's MIBG scan (description in previous entries). Her doctor said "it looked the same" as her last one - which is good news. It means it hasn't grown much and is stable.

Since this is the case, they (Hope's team of doctors) feel they don't have to rush into a chemotherapy and might instead go with the Accutane treatment. This is not definite yet. They were to meet Thursday afternoon and discuss the options more. We have not heard any results yet.

Accutane is an acne medicine but also effects neuroblastoma cells. In some cases, it makes the cells "mature" - stop growing and reproducing. This is a very good thing. It is an experimental treatment, as will be most (if not all) of the future treatment plans.

In the meantime, we are just hanging this weekend. Went to some local craft shows today. The boys had soccer. Good ol' normal stuff.

Love to all.

Wednesday, November 10, 2004 8:08 PM CST

Hi.

Went to CHOP today. Hope had another audiogram. Her hearing in her left ear was just a tiny bit improved but her hearing in her right ear remains less than 50%. But we are happy for even the small improvement and happy there was no more reduction in her hearing.

She had her MIBG injection (description in last entry) and then we met with her oncologist to discuss her recent weight loss issues related to the g-tube and also, the next round of treatment.

They threw me a little bit of a curve by suggesting a medicine that wasn't mentioned before. It's another form of chemotherapy and is taken orally. It can be given at home with follow-ups at clinic. Not sure if this is the route they'll go yet, but it is something they are very much considering. Will describe more when I know a little more.

I'm so sad that Hope has to go through more chemotherapy. They said this one has less side effects and they have seen good results from it. She may/or may not lose her hair again. I know I shouldn't be surprised when I see other children still going through additional chemos, but it was something I hoped she could avoid again. Her doctor said that really "all" her medicines and treatments should be considered "chemotherapies" but I guess I didn't see it that way before.

As for the g-tube, we are going to try cutting the rate of the night time feeding to see if this doesn't upset her GI tract so much. We are hoping it will also allow her to feel hunger and start eating more on her own. Please keep your fingers crossed and say a small prayer that this works. The g-tube has not been the best route of nutrition for Hope as we hoped it would be. And she can no longer go back on the TPN (the IV nutrition). I'm beginning to consider alternative options - acupuncture, hypnosis, anything...

Tomorrow is her MIBG scan at CHOP. Her oncologist said we should then page him, and he will read the scan asap. We should know a little more tomorrow. Her team will then discuss the next best treatment option for her. Hopefully, we'll hear by Friday or Monday.

Love to all.

Monday, November 8, 2004 11:44 AM CST

Hi.

We did get to go to NYC last week. We were there from Thursday - Saturday evening.

We went to see the Radio City Music Hall Christmas Spectacular. We've never been to Radio City and we were all impressed with it's size and grandness. The show was a lot of fun, too. We all especially enjoyed the dancing Santa Clauses. Unfortunately, the last scene with the Living Nativity was ruined because they allow cameras. It was like sitting in a disco. With the digital camera flashes that act like strobes, it was very uncomfortable to watch the stage with hundreds of cameras going off. It was such a shame. Plus, John got to sit next to a woman who thought we paid for 5 tickets to listen to her talk and tell us about her bad neck throughout the entire show. How do you stop someone like that?!

The next day we did whatever we felt like. The kids got to ride the giant ferris wheel in Toys R Us, then we went to see The Incredibles at a large movie theatre in Times Square. We also went to the Museum of Television and Radio which the boys and John enjoyed. I'll tell you, though, the place is like Fort Knox. They have more people who work in this small place - all in severe business suits. We were asked to show our tickets at every floor and every room we entered. When one person directed us to the bathroom, another stopped us a few feet away to make sure where we were going. It was very odd for a museum that houses old television shows.

Saturday we walked around Greenwich Village and went to a flea market. John and I used to do this alot when we dating. There are so many great little stores and restaurants. We wound up spending a half hour in a little toy store that sells fun and odd goody bag type of toys. There were so many fun things to see, it was hard to see them all. The kids really loved it.

The weather was rainy and cold the first day, but bright & sunny (still cold) next two days. Would have liked to stay an extra day to see the NYC Marathon, but we were all ready to go home. There were so many people in the hotel who were participating in the marathon. A lot of people were walking around with their country's flag draped around them. All in all, it was a fun, little get-away.

Hope is okay. She had a very rough night last night. Had some type of stomach bug and was up all night. Around 7 this morning she finally fell asleep and she just woke up now, 1:00. Normally she'd have tutoring now, but her tutor is coming home from Florida tonight. She'll still have her Spanish tutoring this afternoon at 4.

We head to CHOP on Wednesday for some tests and clinic. Thursday will be her MIBG scan (for my father-in-law and others who say I've come to speak in medical terms - sorry, it does become second nature - an MIBG is the radioactive medicine that is injected into Hope that attaches itself to the neuroblastoma cells and makes them glow under the scan. It allows the doctors to see where it is and how dense it is.) Hopefully, hopefully, they will then decide on the next round of treatment. She really hasn't received any treatment since her MIBG Therapy back in May (the radioactive medicine given at a much higher dose). She's been receiving multiple transfusions and recovering from the Therapy and her g-tube surgery. We are hoping her counts and numbers (blood cell counts and liver function numbers) are good enough to start a next round of treatment - whatever it is.

Hope everyone had a great weekend. Will hopefully hear test results by Friday or next Monday. Love to all.

Tuesday, November 2, 2004 8:39 PM CST

Hi.

Meant to thank the Rocky Hill firemen. On Halloween night, they man the crosswalks with large flashlights and safely help the children cross the streets. I had never seen that anywhere before and I think it shows what a good sense of community Rocky Hill has.

Today was RWJ clinic day. (Oh yeah, and voting day). Hope's red blood was 10.1 and her platelets were 67. So, still one is coming down very slowly and one is going up slowly. Thankfully, still no transfusion. She got in an hour and a half of Geometry tutoring while we waited for the counts and then we were on our way.

Had dinner at Macaroni Grill tonight with Grandma & Grandpa B. and cousins Giovani and Maya. Had a very nice night together.

Tomorrow is the last half day of school and then 4 days off - yea! Thinking of going to NYC for a couple of days but not sure yet. It's hard to plan anything ahead of time since many things can change our plans. Makes booking a hotel room difficult sometimes but has usually wound up being perfectly fine in the long run. It has taken the pressure off of me to plan everything in advance. I really am enjoying just picking up and going.

Hope everyone in NJ enjoys their 4 day weekend.

Love to all.

Sunday, October 31, 2004 2:01 PM CST

Hi.

Happy Halloween to all. It is a BOO-TI-FUL day here! It is absolutely gorgeous. A bit windy but perfect autumn picture day. We're even back in t-shirts today. The boys are really looking forward to trick-or-treating with their friends in Rocky Hill later. They've been counting down the hours all day.

The rest of last week was uneventful. Hope had a few tutoring sessions and is with her Geometry tutor right now. She's here early today so she can trick or treat with her young son tonight.

After church today, Hope and I went to the Sugarloaf Craft Fair. We were there on Friday when it first opened but we had to zip through the convention hall to get back by noon. So, we decided to go back today and a few of the vendors remembered Hope. One vendor even gave her one of her glittery scarves. Hope's wearing it on her denim hat now. Change the look of her hat a little.

The boys have half days Monday - Wednesday for parent/teacher conferences. Then they're off Thursday & Friday. Hope will be tutored tomorrow by two of her tutors and then that will be it for the week, except for loads of homework. Tuesday we have RWJ clinic. And then the rest of the week is undecided as of now.

Hope everyone's day is as beautiful as here. Love to all.

See new photos of costumes and see Hope stuff using link below.

Tuesday, October 26, 2004 3:48 PM CDT

Hi.

Had RWJ clinic today. Hope's red blood is still slowly coming down but, thankfully, it's very slowly. Her count was 10.7 (cut-off is 8). Her platelets are also slowly going up - 47 today (20 is cut-off). So, again - yea - no tranfusion. She did get to work on her Geometry with the tutor there, which was good. Her regular Geometry tutor had a little cold on Sunday and couldn't come. At least she isn't a week behind.

We were hoping to steal John away from work and have lunch together but he had a meeting. So, Hope and I went to Menlo Park Mall just to walk around (wheel around). We hadn't been there in a few years. Forgot that one side has ramps but the other side of the mall has stairs - very weird. Makes going around with a wheelchair or stroller very difficult. Don't quite understand who designed it that way.

We did get to go to our church's annual "Pumpkin Night" on Saturday night. The kids looked great in their costumes and I'm just thankful they're done. They had a DJ which the younger kids really liked. Still like the pumpkin glow at the end of the night. All the carved pumpkins are lit and you get to walk around and see them all.

For now, we don't have to go back to clinic until next Tuesday. YEA!!!! The rest of the week will just be tutoring, Girl Scouts, and regular stuff. Hoping to go to the Art Auction for the schools on Friday night. And Hope is hoping to go to the "Lady Dracula" play on Saturday. Then Halloween on Sunday night. Liam & Sky are already counting down the days.

Happy Halloween! Love to all.

Click on the link below for Hope stuff!

Thursday, October 21, 2004 7:20 AM CDT

Hi.

Yesterday was interesting. We arrive for our 3:00 appointment at CHOP clinic and when we got out of the elevators, the clinic was empty (except receptionists) and very, very quiet. I already knew this wasn't a good sign.

Well, I screwed up and it wasn't the right day for our appointment. They had it recorded as next Wed. But a week-ago Monday, they had told me "not this Wed., next Wed. (meaning 10/20 - in my mind)".

So, we had driven an hour and a half to find out we were probably going to have to turn around and come back next week. Then the receptionist paged Hope's doctor and he kindly came to the clinic and met with us. Even though he wasn't prepared for a formal meeting, we still discussed g-tube concerns and future treatment options.

The plan for now is to come back in 3 weeks for another bunch of scans and tests, so they will have a baseline before starting another treatment option on Hope. The treatment is still being discussed since there's a question whether she does or does not need her stem cells back. They will also discuss the drug trial that is being done at both CHOP & RWJ. Hope's liver functions have to be in the normal range for this, though, and they are slowly coming down since her surgery.

So, for now, that's the plan. In the meantime, I will contact RWJ GI clinic next week to see if we can start tests there for Hope's GI problems. We have a regular RWJ clinic appointment next Tuesday for lab work.

For now, we will enjoy the respite from every other day clinic appointments and transfusions. Trying to get the kids Halloween costumes together before this Saturday - our church's annual "Pumpkin Night".

Have a great weekend. Love to all.
See the new website down below for Hope stuff!

Tuesday, October 19, 2004 7:09 PM CDT

Hi.

Went to RWJ clinic today. Hope's hemoglobin number was 11.7 (down from 12.9) but the good news is she still didn't need a tranfusion. Her platelets number was 42 (up from 40). I'm not quite sure why one number is slowly going down and one up, but I guess we'll discuss that tomorrow at CHOP. Did find out that CHOP and RWJ are both doing a new drug trial for neuroblastoma. It's similar to Accutane. I will ask the CHOP oncologists tomorrow about it.

We did get to get-together with Hope's aunt Marie and cousin, Samantha yesterday. We met them, Uncle Mike and Aunt Sue (my sister and brother) in Lahaska, PA. It was a great fall day to walk around the shops there. We had lunch together then only stayed for a little while longer, since Hope was supposed to have tutoring at 4:00. It was still nice to see them and enjoy such a pretty autumn day together.

Love to all.

Sunday, October 17, 2004 5:39 PM CDT

Hi.

Hope's with her Geometry tutor right now and all's quiet here. The guys just got back from tennis and now it's pizza, t.v. and Sunday newspaper time.

We went to Montgomery's first annual Harvest Fair yesterday. Unfortunately, it was very cool and started to drizzle, but it was still a very nice event. You can tell the Rotary Club worked very hard to put this event together. Hopefully, it will become a town tradition. Our thanks, again, to Dr. Mary DeCicco (our dentist) for her kindness to our family.

As for this upcoming week. We will probably go to RWJ clinic on Tuesday for labwork and possible transfusion (my guess it will be time for one). Wednesday we have our formal meeting with Hope's oncologists at CHOP to discuss future plans.

My sister-in-law and niece are in from Las Vegas for a week. We are hoping to get together with them tomorrow or Tuesday afternoon.

Hope everyone had a nice weekend. Love to all.

Thursday, October 14, 2004 8:42 PM CDT

Hi.

More semi-good news. Hope's labwork today at RWJ clinic showed that her hemoglobin level went down only a little bit - from 14 to 12.9 (8 is cut-off). But her platelets count went up by itself from 30 to 40 (20 is cut-off). We were very happy and surprised. We even got to leave - for a second time in a week without any transfusions!

So, since Hope has been in the house most of the week, we went shopping. How else would we celebrate?! It was nice to walk around the mall when it wasn't very crowded (and without Liam and Skyler going "when are we going home?").

We went to Hope's Girl Scout meeting tonight. Hope enjoys these meetings since it's usually the only time she gets to hang out with kids her own age. I enjoy these meetings because it is so nice that the girls are capable enough to do mostly everything themselves now. We had another leader tell us that one time - that when the girls get older it gets easier; but when you're in the midst of showing them how to do this, how to do that (with anywhere from 12 - 18 girls per meeting) it was enough to make you pull your hair out. They were always fun, though, - now it's a pleasure.

To Aunt Helene - yes, it was chocolate chip cookies - two nights in a row. Hope wants to make orange shortbread cookies tomorrow. Glad to hear from you and that you're all well. Give everyone our love!

Back to tutoring and chores tomorrow. Love to all.

Tuesday, October 12, 2004 7:12 AM CDT

Hi.

We had some semi-good news yesterday. We went to CHOP expecting to be there for 2 or 3 days, but after they drew Hope's lab work, her numbers came back a little better than when we left RWJ on Friday. We're all hoping this is a good sign and means Hope's bone marrow is slowly starting to come back on it's own - but from past experience, I'm a little leery to wish for anything as big as this. I have to have more faith. If there's anything I've learned from all of this is that God works out things in His own time.

We also met with the surgeon as a follow-up to the g-tube placement. They were considering doing a scope on her today to see why she was going through so much red blood but since her numbers were better, again, they decided to wait and see. They did conclude that her "button" had a defective inner closing valve, so after she heals more, they will replace the "button". It's kind of like putting in an earring but Hope doesn't want to hear any of that. This is a girl who doesn't even want earrings.

So, we were able to come home. What a huge gift and very unexpected.

Today, we'll just hang low and let Hope catch up on some much needed sleep. And then later, catch up on lots of homework. I also kept Liam and Sky home today since they both have little colds and both looked exhausted this morning. I'd rather catch their colds early and let them rest than have them grow into full-blown colds. Don't need that around Hope. I think it'll just be a quiet day here. Maybe I'll even do some baking.

We did get to Great Adventure on Saturday. We left at 7:00 am in a cover of fog but by about 10:00, it had burned off and turned into a beautiful, autumn day. The GS workshop was very well done by the NJ State Police. There were 12 female officers there speaking about their careers. What was interesting was how diverse their careers all were. Everything from Governor detail, to Academy training, to K-9 unit, to High Tech (internet surveillance), etc... Then the girls went around to different stations to hear other state police officers talk about the Hazmat team, bomb squad, water patrol, S.W.A.T team and many more. We could never have done a workshop as well on our own. My guess is there were more than 500 girls there.

Well, time to start chores. Have a great day. Love to all.

Friday, October 8, 2004 2:51 PM CDT

Hi.

We're at RWJ clinic right now. Hope just received her first bag of blood and they've now hooked up the second. Since it takes about 2 1/2 hours to drip in, we'll be here for a little while longer. At least it will boost her up through the weekend. Luckily, she didn't need platelets - her number was still good.

John will be giving blood tomorrow at Jennifer Kantor's Girl Scout Gold Award Blood Drive. If anyone else is interested - it will be at the Harlingen Reformed Church. I'm not sure of the exact times but I know John's appointment is 8:30 am. If you ever wanted to be a superhero as a kid and save lives - this is the way to do it as an adult! You are truly, truly saving lives (Hope's included).

Hope and I will (hopefully) be at Great Adventure bright and early tomorrow morning with our GS troop and many, many others from the Northeast. It's for a badge workshop and just for fun. It should be a nice, autumn day. We are really looking forward to it.

Hope you all have a great weekend. Love to all.

Wednesday, October 6, 2004 6:31 PM CDT

Hi.

Another transfusion day at RWJ clinic today. Some of the doctors were a little worried that Hope is going through red blood so quickly. The doctors at RWJ and CHOP discussed the issue and decided they can wait a little longer.

We were considering an endoscope on Friday, but they decided instead on a stronger medicine to see if that will help heal her stomach. In the meantime, they want us to drop the tube feeding down to 40/mls an hour until Monday. We would have been at 80/mls tonight (goal of 120).

The saline IV drip seems to be helping a lot with her hydration. I'm so glad we pursued this. It makes for a calmer household. Hope and I aren't battling over how much she can drink.

Plan for now is to go to RWJ clinic on Friday for hemoglobin & platelet transfusions to bump her up for the weekend. Then to go to CHOP on Monday to meet with the doctors there and to see the surgeon as a regularly scheduled follow-up. We may or may not be admitted depending on her numbers. As for stem cell replacement, they'll decide that after seeing if her stomach is healing.

Hoping for a normal day tomorrow. You know, cleaning, schoolwork, etc...

Tomorrow night is "Ladies Night Out" at the Cherry Valley Country Club. This is a fundraiser for the Cancer Institute of NJ - the place where Hope goes for clinic (RWJ). Anything I can do to support this cause, I will. Looking forward to a nice night out.

Love to all.

Monday, October 4, 2004 3:13 PM CDT

Hi.

Just got back from RWJ clinic. Hope needed more red blood and saline to keep her hydrated. Since she is still "oozing" from her g-tube site, she will be needing frequent hemoglobin transfusions until it heals fully.

The home supply company will be sending out saline IV bags tonight. I haven't done this yet but I'm guessing it's not too hard to hook up. Hope has a hard time drinking enough to keep her fully hydrated right now, so this should be a big help. It will keep us from having to be admitted or go back & forth to the clinic every day.

Hope's Spanish tutor should be here in a few minutes and we had her Geometry tutor over last night for the first time. She's been working on review materials with the hospital tutor and is almost caught up with the Algebra review and can start into Geometry.

John and the boys are off playing tennis on this beautiful fall day.

Hopefully, we'll be home tomorrow and Wed. Then clinic again on Thursday. Still waiting to hear about stem cell replacement at CHOP.

Love to all.

PS: Happy Anniversary to Tim & Sonya - plus Happy Birthday to Tim!

Saturday, October 2, 2004 8:36 PM CDT

Hi.

We're home - thankfully. Hope is better. Still recovering but better than when we went in. She is on a list of new medications. I'll have to make a chart up again just so I don't overlap or mess up. But it is nice being able to push her medications in with a syringe right into her g-tube. We're back down to 40 ml/hr and working our way back up slowly on the feeds. It always seems like one step up - two back.

We are still hopeful the g-tube was the right move - but I guess we will have to wait and see a few weeks to see if it is really helpful or not. It seems to be causing us more grief right now, but it's just healing very slowly. It absolutely kills me that we had to do this to Hope after she was finally regaining her full appetite and feeling good. I feel that every time she starts improving we knock her down again and again. I'm trying hard to see this as a good thing.

This was a hard hospitalization for us. Hope was hungry but wasn't allowed to eat in case they needed to do any GI procedures. I just seemed to fight with almost every one over procedures, constantly changing doctors and nurses (We had 3 different nurses in one hour & have to repeat all information again and go through examining Hope - which causes her pain) and slowness. They're starting to wear me down. The best part was the last doctor today did a very cool floating dollar bill trick before we left. Now we have to figure out how he did it.

We did make it for about an hour and a half to the Girl Scout apple pie making. We missed the picking but went to my co-leader's to help core, peel, slice and mix the apples in with sugar, cinnamon, etc... Then the girls filled 18 bags (some doubled) and froze them. They will make the pies in the near future and donate them to local service organizations - like the EMS. It's always a fun way for the girls to work on their required 25 hours of service. We hadn't done that since they were about 6 or 7. What was nice about this time is that the girls can now do all the prep work themselves. The adults just sat back and enjoyed.

I saw John's entry that there were over 100,000 hits! That's pretty amazing. Thank you, again, to all of you for your continued support. It's hard to express how much it helps us.

I'm beat tonight. Just woke up from what was supposed to be a quick nap on the couch and found out two hours had gone by. Still ready to go right back to bed.

Good-night to all.

Thursday, September 30, 2004 6:36 PM CDT

Gemma took Hope to the hospital this morning - Hope threw-up dried blood and we got a little worried. We weren't sure if it was old blood from the g-tube operation or if it was new blood.

They admitted her today and will probably keep her for a couple days. They don't seem too worried about it - possibly some irritation from the peptamen feedings. They may give her some medicine for the irritation and try a different feeding.

Gemma and Hope hope to be out by Saturday so that they can attend a girl scout pumkin picking outing.

The Rotary Club of Montgomery/Rocky Hill is having a Harvest Fair and Barbeque on October 16th. The Rotary Club has supported us very generously and we certainly support them and will be attending and enjoying the food and fun.

If you didn't notice, we've now had over 100,000 hits to this website. Thank you everyone for supporting us - it certainly gives us strength.

Wednesday, September 29, 2004 8:52 AM CDT

Hi.

Well, I have to eat my words. We went to RWJ Clinic yesterday and fully expected Hope to have a red blood transfusion and possibly platelets, too. But, they came back with a CBC reading of 8.9 (8 cut-off) for the hemoglobin and 23 (20 cut-off) for her platelets. So, they sent us on our way. Needless to say, I was shocked.

But got a call this morning from CHOP clinic saying that Hope's CBC reading from Monday's at-home lab draw was 7.4 and they wanted to make sure whether she had had a transfusion at RWJ yet. Don't really know if she came back up on her own or just two very different readings. We have to go back on Friday to Clinic.

We're trying to increase the amount dripping into her and come down on the hours she's connected to the IV pole. We're down to 18 hours now. Gonna shoot for 16 tonight. Goal is 12 hours overnight. She's feeling okay - not great but okay - better than the 24 hours, though.

Just regular day today. Housecleaning, home-tutoring and errands.

Hope everyone stayed safe and dry yesterday. I was out driving in that downpour around 7:30 pm and it was a little nuts. The sewers couldn't take it all in and they were spouting water on certain parts of the road. We are so sorry for our friends in Florida. We only experienced a tiny, tiny piece of this storm. We pray no more hurricanes.

Hope's IV is beeping "dose delivered" - she's free!

Love to all.

Saturday, September 25, 2004 3:49 PM CDT

Hi.

Hope and I got home around 9:30 last night. Believe it or not - the Surgical floor didn't want to give Hope a red blood tranfusion! They didn't want to take responsibility for the risks it involves. Since her hemoglobin number was 9 - and the cut-off is 8 for Oncology (Onco felt she could have received one to bump up her number) - they didn't feel they needed to give her one. I was shocked and told the resident I didn't agree. But each department's policy is SO different, it's amazing. I guess we could have re-admitted ourselves onto the Onco floor (if there was room) or hang out in the ER (which is not the best at CHOP-very uncomfortable and they are so busy, it takes forever), so I decided to just come home and watch Hope for symptoms (lethargy, paleness, weakness). We thought maybe we could squeak through the weekend and see about Monday or Tuesday at RWJ clinic.

Hope is sitting at the dining room table right now stamping cards. She's taking a break from reading "Great Expectations" for school. She is feeling okay. Still sore and can't stand up straight yet - but it's slowly starting to feel better. She is hooked to an IV pole 24 hours now, until we can make sure she tolerates the "feeds". Then we'll start increasing the speed in which it drips in and reduce the time - hopefully to 12 hours soon.

I changed the tubing for the first time this morning and was a bit panicked to watch her stomach contents leak out when I took the one tube out of the "button" (the device that is implanted in her stomach - looks like a small button on the outside) and replaced it with a clean one. Our visiting nurse (who I called) said it's "normal" but hopefully when she is healed more and her stomach gets used to the feeds, it won't happen as often. I will forever be amazed at the strength of nurses. They are so calm and collected.

Our visitng nurse told me that since Hope is no longer receiving TPN (the IV nutrition) she may not be able to come anymore - since her company is an infusion company. I hope, more than anything, that's not the case. She is great with Hope, always available and lives in the next town. I'm not sure where we'd be without her. I guess we'll find out next week.

Hope's MIBG scan (the radioactive scan that makes the neuroblastoma glow) didn't show much difference from the last one 8 weeks ago. Yea! Even though it's still there, it didn't grow any from her last treatment. We are very thankful. They said they would let Hope heal a bit and then probably give her back her stem cells this or next week. Hopefully, that will let Hope's bone marrow start re-growing her own red blood cells and platelets. We could then cut back or even stop the frequent transfusions.

As for her next treatment plan - they're still debating it. Since her scan didn't show any new growth - they felt they had a bit of time to still discuss it.

Thanks for all your well wishes. We are very grateful for your continued kindness to Hope. It helps us get through each step knowing others are praying and pulling for her, too. Love to all!

PS: Happy Anniversary to Russell & Sheri! We love you!

Friday, September 24, 2004 4:40 PM CDT

Hope is doing well. She's tolerating the feedings and moving around. There was a chance that she could have come home today, but they found out late in the day that her hemoglobin was low. It takes several hours to get the blood into her so they'll stay night and come home tomorrow morning.

Thursday, September 23, 2004 9:11 AM CDT

Hope's surgery went well. We hope that she'll be home over the weekend.

Unfortunately, they had to insert the tube directly to her stomach and not past it. She had too much scar tissue from prior operations to put it there. The downside is that her stomach may not tolerate the feedings.

She's getting some pain medications but they've already started pulling back on them and now she's got to start moving around. She had a rough night as a draining tube was not functioning correctly, but they adjusted it (another painful process) this morning and things are better.

Tuesday, September 21, 2004 5:36 PM CDT

Hi.

Hope's GJ tube surgery is scheduled for 8:30 am tomorrow morning. We have to be there at 7 am for lab work and check-in. We met with the surgeon today. He said the surgery should take about 1-2 hours. He is hoping he can slide the tube into place easily but is worried about the amount of scar tissue from Hope's previous surgery in Dec. If he cannot place the GJ tube, he will place a G-tube instead - one that goes directly into her stomach. We'll have to wait and see tomorrow. We should be at the hospital for 2 - 3 days, hopefully. She will also receive an MIBG scan on Thursday to see where things stand.

Hope received more platelets today at CHOP to bump up her numbers before her surgery.

They decided to wait a week before they give her her stem cells back. Since it made her so sick last time, they don't want her to be sick again and dislodge the newly placed tube. They will also leave her broviac (central line) in for a while longer.

Hope had a great time over the weekend seeing her friends in her Girl Scout troop. The girls are all so tall and such young ladies now. Where did our little Daisies (kindergarten GS) go?!

Thanks for all your good thoughts and prayers.

Love to all.

Friday, September 17, 2004 6:21 PM CDT

Hi.

Thank you for all the birthday wishes and cards today.

Hope's 14th birthday hasn't been as fun as last year's (NYC and Broadway show) but she's looking forward to tomorrow.

She started today at the high school, taking her Freshman picture for the yearbook. Thank you to friend & HS nurse, Pam and friend & HS gym teacher Johanna for making it a quick and easy experience.

Then tutoring. Jeanne and Hope worked on a Physics lab about light. They seemed to be having a good time. Our thanks to the High School teachers who have been so accomodating to Hope and helpful to Jeanne.

Unfortunately, Hope is spending her birthday evening on the RWJ Oncology floor receiving red blood and platelets. And doing her homework. Timing wasn't the greatest but needed to be done. John is with her.

Tomorrow, Hope's Girl Scout troop will be getting together for their first overnight and meeting. She hasn't seen most of her friends since the end of last school year so she is looking forward to it.

Hope everyone's weekend is nice.

Love to all.

Monday, September 13, 2004 5:47 PM CDT

Hi.

Hope's GJ surgery has been scheduled for Wed. 9/22, at CHOP. We're supposed to go into the hospital the day before. They'll probably also give her back her remaining stem cells. The MIBG Therapy seems to have damaged her bone marrow to the point where it cannot grow enough cells on it's own. That is why she has been needing so many transfusions. It isn't a painful procedure, but the stem cells are frozen in a preservative that smells like very heavy garlic. It made Hope very sick last time, but we are hopeful it won't again, since she won't be on chemo this time.

Hopefully, we will start talking about what we do next to beat this cancer into remission. They mentioned the drug Accutane. It is a medicine used for severe acne but seredipitously seems to attack neuroblastoma cells, too, in some cases.

Hope should start her tutoring on Wed. She will have 3 tutors this year. Jeanne will teach Physics, English Honors and History. Hope will have a separate tutor for Geometry (and possibly Algebra II) and one for Spanish. Should be interesting.

Well, Back-to-School night tonight for Liam and Skyler's classes.

Love to all.

Wednesday, September 8, 2004 7:51 PM CDT

Hi.

Very tired tonight but just a quick update.

Hope and I went to RWJ today for what I thought was just going to be her weekly platelets transfusion but she needed red blood, too. She has been averaging every 3 weeks but this time it was only a week and a half.

We spoke with her oncologist at CHOP yesterday. Things are still unplanned but they are looking into the week of 9/20 for her procedures.

Otherwise, back to a school and work schedule. It was nice having everyone home for the month of August. It's a little depressing to be back into a routine.

Sunday, September 5, 2004 7:29 AM CDT

Hi.

Just an update, then off to church. Then, Bertelson(sen) -John's cousins are "sons") family & friends yearly get-together today. Always a fun day.

Came back last night from Ocean City, NJ. Had a wonderful time. Could not have asked for better weather - it was perfect. We usually do sightseeing vacations, so it was so nice just to relax. We'd sleep late, have a big breakfast and then do whatever we felt. Really didn't want it to end.

Came back to find our entire back yard dug up and two large construction machines in the back yard. We knew the septic company was going to start working late last week on the new septic system. We just didn't realize how extensive it was going to be. Plus, the doctor's office next door is also having their's done at the same time - so both of our back yards (which join together) are entirely dirt right now. At least it will be done soon - yea!

Hope is fine. We went to CHOP last Wednesday for platelets. We were supposed to have a meeting with Hope's doctor but they were extrememly busy and just couldn't get to us for a formal meeting. Just a quick talk on some tentative plans. So, we still are not sure of next week's plan. We're assuming we're doing something - hoping to hear today or tomorrow.

See new pictures. Also, see new ones at the link below.

Love to all.

Saturday, August 28, 2004 10:13 AM CDT

Hi.

We'll be heading out for a week's vacation tomorrow.

Hope is fine. She & John went to Robert Wood Johnson for red blood & platelet infusions yesterday afternoon. They got home around 11:00 pm. So, she will be set at least until our next clinic appointment at CHOP next Wed. I took the boys for eye exams and new glasses.

School will start for the kids on Tuesday 9/7. Although Hope will probably be in the hospital that week (hopefully) to get the surgical procedures done.

Hope you all enjoy the last week (school calendar-wise)of summer.

Love to all.

Tuesday, August 24, 2004 6:20 PM CDT

Hi.

Went to CHOP today for Hope's "regular Tuesday" platelets infusion. Met with her doctor briefly and he said that the team decided to wait a little longer to see if Hope's counts stabilize on their own. So, we have the next week & a half free - yea!!! They'll probably either do the stem cell infusion and/or the GJ tube in early September.

Since John is still home, we may pick up and go away for a few days, since we now know we have them free. Not definitely sure yet, but hopefully.

In the meantime, Hope, John, L & S went to play tennis a little while ago. Not sure if Hope will play but she said she wanted to watch.

John and I pulled up the only wall-to-wall carpeting we have today - another yea! It was light pink and ready to go. The floor underneath is the same as the rest of the house - pumpkin pine floors.

Happy Birthdays go out to our nieces, Abbie & Amanda and our nephew, Alex. Also, Happy 31st Anniversary (!) to Nancy & Buster (my sister and brother-in-law). It was a lot of fun having Abbie here for a few days last week. We had a great time down the shore on Friday and Satuday with John's family.

Love to all.

Friday, August 20, 2004 8:16 AM CDT

Hi.

Just wanted to let you all know we have the week free again (yea). Hope's oncologist was on vacation the same week we were, so none of the other oncologists follow Hope's case as closely. In other words, no one else seemed to know of plans for Hope for her stem cells or her GJ. The oncologist and I spoke yesterday and he'll start making plans for next week for Hope.

Now, we've had the week open up again. Just in time for me to get sick. Spent Monday night, Tuesday and part of Wednesday in bed sick with a cold. Feel better, just a lingering cough. John is still home, so he and the kids hung out, played tennis and watched the Olympics a lot.

John's niece from Arizona, Abbie, is now staying with us. We picked her up yesterday from John's sister's, and she spent last night with us, all day today and then tomorrow we'll bring her back to John's sister's for a family picnic. She'll leave on Sunday but will be back in January to go to Culinary School in NYC in January. The kids are excited to have their cousin here with us.

We're hoping to go to the beach today.

PS: Sorry to Beth & Sara about Boston. Wish we could have said better things. We DID enjoy the sights - especially Boston Common.

Monday, August 16, 2004 10:50 AM CDT

Hi All,

We're b-a-a-c-k.

Had a nice time seeing the sights in Boston but we were very tired of the rude people everywhere we turned, except the Boston Children's Hospital. There was even a man who practically shoved Hope out of a doorway that I was holding open for her. "They" say Parisians are rude, but when we were there a few years ago, we were treated very kindly. I would venture to say that Bostonians should take that title (I'm sorry to all our Boston friends now here). Maybe "The Big Dig" finally got to them all (a massive road constructin project that has been going on for years and years).

We decided to leave Boston (I'm sure the Bostonians were as happy to see us leave as we were to do so) and stay the weekend in Plymouth. We very much enjoyed this area. We stayed at a nice inn (hotel) with a great pool for Liam and Skyler. The area had a lot of sights and history of it's own but we mostly enjoyed the harbor. It was a very pretty area.

The first day there we went to Connie & Danny's new townhouse to pick up Liam and Sky who had been staying with her the previous week. They are about 10 miles from Boston. The townhouse is very nice and open with two huge soaking tubs. It's on top of a hill in a gated community that you would never even know is there.

The rest of the time, we went to the Boston Children's Hospital for platelets while John played golf with his friend, Phil G., who lives in the area. We then saw a few sights - Quincy Marketplace, a sunset harbor cruise, a trolley tour, Boston Common and the swan boats, the aquarium and the science museum - where they had a wonderful exhibit on "The Lord of the Rings". For those who are into the trilogy, it is definitely an exhibit to see if it should travel to this area.

Mostly, we are happy to be home. It was nice to get away and see some new sights but it always makes you appreciate home all the more.

The rest of our week is uncertain. We are waiting for a phone call from the oncologist on whether Hope will have to go into CHOP this week for a GJ tube or to have her remaining stem cells given back to her.

I think in my rush to get ready to go away last weekend and then for the week, I forgot to mention that Hope's bone marrow aspiration came back clean - Thank God! But it also showed that her bone marrow is not returning the way it should after the MIBG therapy she had mid-May. They could only wait so long to see if it would return on it's own before they gave her back her remaining stem cells to jumpstart the process. However, by doing this, Hope will no longer be eligible for another MIBG Therapy. She won't have any more stem cells to give back should it happen again. So, again, we're in a period of trying to decide what's the next best move for Hope's treatment.

Hope everyone's enjoying the last few weeks of summer.

Love to all. PS: To Corlee & family, so sorry to have missed you.

Thursday, August 5, 2004 8:10 AM CDT

Hi.

We're here at CHOP, just waiting Hope's turn for her bone marrow aspiration procedure. It's 9:18 and there are 5 kids ahead of her. Plus, she does need red blood today, so we'll be here for awhile.

Otherwise, things are fine. Hope and I went to a Creative Memories Crop (a time to get together with others and work for a long time on scrapbooking) Tues. night. We went with Aunt Amy and cousin Maya. Hope is so much more creative than I. Her ideas for pages are fresher.

Will write later with how her procedure went.
---------------------------------------

It's 6:00 and we're home. Hope's procedure went smoothly. She's sore but didn't need morphine since between the sedation medicine and the Benadryl they give her prior to blood infusions, she was pretty knocked out anyhow. She slept through most of the 3 hour infusion. We should hear results soon. We are praying it's clean.

We are sad to say that the little girl Alex Scott, of Alex's Lemonade Stands, passed away this weekend. She was buried today and the mood around the clinic was very subdued and somber among the nurses and doctors. We are so sorry for her family - she was a special little girl. She will be remembered by many for her courage, strength and spirit during her long, long battle.

I will be away this weekend with friends for a "girls' weekend" in Stone Harbor. It'll just be John and Hope, since the boys are in Boston. It should be a quiet weekend for them.

Then, if all goes as planned, we are hoping to be in Boston next week on vacation.

Love to all.

Monday, August 2, 2004 8:23 PM CDT

Hi all.

Thanks for all the Happy Birthday wishes. It was a fun one. After church, the kids and I went back to Potter's Alley to pick up our finished pieces but, of course, wound up staying to do more (really have to stop going there - we can never just leave. It is a lot of fun - if you like that sort of thing). Then John and I went to see "The Village" and grabbed some late-night dessert and drinks out.

Today, Aunt Connie, Aunt Susan and my niece Samantha came over to visit. They took me - and the kids - out for a wonderful lunch and then we came back and introduced "Apples to Apples" to Sam. We haven't seen Sam for more than 2 years since they moved to Las Vegas. She is almost 23 (oops, can I say that - sorry, Sam) and is such a beautiful young woman now. She is a very talented Anime cartoonist, too - the boys were thrilled to have an adult who enjoyed Digimon, Yu-gi-oh, etc... as much as they do.

The plan for the week is RWJ clinic tomorrow morning and probably some blood products. Then, CHOP on Thursday for a bone marrow aspiration and biopsy.

Aunt Connie will be taking Liam and Skyler with her back to Boston tomorrow for the week. I will miss them and their happiness so much.

Hope everyone's enjoying a great summer. Love, Gemma

Saturday, July 31, 2004 6:50 AM CDT

Hope and Gemma came home yesterday after a week in the hospital. Just in time for Gemma's birthday tomorrow (8/1).

Thanks to all for all the well wishes while they were there. Thanks especially to the Starkmans for helping with the boys.

See one new picture.

Thursday, July 29, 2004 12:14 AM CDT

They moved Hope out of PICU last night. Everything is stable although they still don't know what caused the fever and blood pressure fluctuations. Gemma thinks it may have been a virus which will have to run its course on its own.

We hope to have them home in the next day or two, but the docs may have her stay longer. But Gemma is lobbying to get out sooner than later and Gemma normally gets her way.

I visited them on Wednesday night and brought ribs for Hope and then last night I brought a large assortment of Korean food. The boys came this time and we played Apples to Apples and had a great time. The Korean food stunk up the hallway but it tasted great and we gave some food to the nurse and a some kimchee to a doctor.

Tuesday, July 27, 2004 8:00 AM CDT

During the day Saturday, Hope said she didn't feel right - but she didn't have a temperature. Later Saturday night (actually Sunday morning), her temperature did spike so Gemma just took her into Robert Wood Johnson. Hope's blood pressure was low so they have her in PICU. She's stable and feeling fine and reading many books. Her temperature is back to normal but her BP fluctuates - there's no real sign of infection so it may be a virus. They may move her to Onco shortly.

We're not sure how long she'll have to stay at the hospital. It may be just a couple days - but they won't send her home with her BP fluctuating. If its a virus, they'll keep her longer until her body can fight it off.

See new pictures.

Saturday, July 24, 2004 11:27 AM CDT

Hi.

See new photos.


Good news, finally! Thanks to everyone's prayers and wishes, and some pretty remarkable doctors.

It looks like the MIBG Therapy actually did a little something. It seems Hope's tumors are a little smaller and the residual cancer left after her massive surgery in December, is less dense.

It's not gone, but getting smaller instead of getting larger is such a good thing! We are very, very happy!!!!!

We don't have the exact measurements from her CT Scan yet. That will probably take until next week sometime. But, the preliminary findings from her MIBG Scan show it to be a little better. We will take anything we can get.

Where we go from here, we're not sure yet. Hope will probably have to have a bone marrow aspiration and biopsy this Thursday. Part of the after-study from the MIBG Therapy. It's a quick, but painful, procedure. Hope said she's getting used to it, though.

Not sure yet about her GJ tube placement. May be cancelled for this week, although the other good news is her ANC rose back up to the 600's on Friday. They won't do surgery until it's at least in the 800's, preferrably 1000, but at least she's not neutropenic anymore. Can go to the movies and mall again.

Just hanging at the house today. Since it's been raining for two days, gave us a good reason to stay home and do some things we've been neglecting around here. Hanging pictures, moving furniture, yadda, yadda, yadda. John's out hitting golf balls in the back yard right now, though. I worked him hard this morning moving furniture, so he deserves a break.

Hope's making Thank-you cards from the more than 200 stamps Aunt Connie gave her before she moved. And Liam and Sky are watching Saturday cartoons. Overall, we're all doing things we enjoy. A very good thing.

Love to all.

Wednesday, July 21, 2004 5:58 PM CDT

Hi.

Hope's labwork came back a bit later than usual yesterday so, we decided to go to RWJ's Emergency Room to have her platelets and red-blood infusion. We were hoping that if we got there by 3 we might get home by 9 or 11 pm. Wishful thinking. Thankfully, we were tranferred to a room on the Adolescent Wing around 6:00. This way I had a bed and we had a t.v. (there usually aren't any in the ER rooms) When we got to the room we found out they still hadn't gotten back her platelet count yet from the blood they drew. So, the platelets hadn't even been ordered yet!

When they arrived around 9:00, they hooked her up and started to drip them in at the usual rate of approximately 20 minutes. But, for some reason, Hope had a reaction (even though she had her pre-meds of Tylenol and Benadryl to avoid a reaction) and had trouble breathing. So, they stopped it, the doctor watched her for a while and after about 1/2 an hour, her breathing was better. They decided to drip the platelets in slower - about an hour. There were no more reactions.

Since, by now, it was 10:30 and they still hadn't even gotten to the red-blood, which takes about 3 hours to drip in, we just decided to stay overnight. This way they could drip them in slowly and watch for any reactions. There were none. So, we've now stayed overnight at RWJ, too. Very nice nurses and doctors there, too. Really a true-calling kind of career. No matter where we've been, the pediatric nurses are AMAZING!!!!

We left the hospital at 6:00 am, so I could be home with Liam & Skyler and John could leave for work. The boys and I went to VBS at 9:00. I stayed until 10:45 and then Hope and I left for CHOP for her injection. Thanks to Jennifer Spencer for watching L & S this afternoon. They had a great time!

It was a weird driving day in Philly, though. Tons of construction traffic going in. I had to call to tell them we'd be late. Arrived at 1:00 (should have been 12), got her 2 minute injection and left. The shortest time we've ever been there!

Hope wanted a salad at a nearby restaurant. On the way out of there, I turned the wrong-way into one-way traffic (thankfully, there was a red light), did a quick U-turn, then missed the right turn and wound up lost in the industrial section of Philly. I thought we were so past getting lost in Philly. Took me an additional 20 minutes to find an exit to get us back to where we needed to be. Dumb, dumb, dumb. I came home, picked up the boys from Jen's and then slept for two hours. Was not my best driving day - all for a 2 minute medicine. Oh well, needs to be done and they're the only ones who do it. Can't complain. We'd go to the moon if we had to.

Tomorrow, we have to be at CHOP by 8:30 am, for a 9:30 CT scan, then blood work, then her MIBG scan at 1:30. Hopefully, will know some results early next week. It also looks like her GJ tube surgery will be postponed since her ANC (Neutrophil Count - infection fighting cells) are now around 200 - which makes her neutropenic - highly susceptible to infection). So, no movies or indoor stuff right now. Back to Creative Memories scrapbooking.

Hope everyone's driving is better than mine. Love to all.

Monday, July 19, 2004 12:47 AM CDT

Hi.

Well, it wasn't exactly a quiet weekend but it was fun.

We went to Great Adventure for four hours on Saturday, to finish out the other half of the park. We saw some shows, went through the safari, had lunch, walked around and then went home to chill. It was hot and humid on Saturday and when you can't get wet (Hope's broviac site can't get wet from outside sources) it's not much fun. The boys could stand under the watering-can showers set up throughout the park but Hope couldn't. They all seemed to have a good time, though. It's something I don't mind doing once a year but since our kids don't like to ride the big roller-coasters yet, I'm glad we aren't asked to go there more often.

After church on Sunday, Hope and I decided to go to NYC to see a Broadway show. It was rainy & cool, so John wasn't going to play golf and he could stay home with L & S. The boys told me today that during a time when the rain cleared a bit, they went and played tennis at the local HS. I kept asking them "What - are you sure it was tennis and not golf?" It's not something I ever imagined John taking the boys to do - but they said they had fun.

Hope and I went to see the matinee of Beauty & the Beast and then decided to see if we could catch an evening show. Beauty & the Beast started at 3 and went to 5:30 and the evening show of Chicago (with Paige Davis of Trading Spaces playing Roxie Hart - very cute) started at 6:30. We've never done that before and I've always wanted to go into the city someday just to do shows. We had a great time! Plus, it was fun not having the boys there going "When are we going home?", "When is this show over?".

A big Congratulations! to Kathy Martin on being voted "Montgomery's Citizen of the Year" at the local Elks awards dinner. She deserves every accolade she gets. We were just happy to be able to nominate her and are thrilled she was elected. Congratulations to a church friend, Dan Pullen, on being voted "Fireman of the Year", too. He also deserves the award. We are just sorry to have missed the ceremony. We thought we'd be at the hospital post-surgery.

This week brings us VBS (not a medical term - yea- but Vacation Bible School). Hope will probably need platelets tomorrow and then we go to CHOP on Wed. for an MIBG injection and back on Thursday for a CT scan and an MIBG scan. Otherwise, it's a quiet week.

Love to all.

Friday, July 16, 2004 8:30 PM CDT

Hi.

We didn't have to go to RWJ today for red-blood. Yea! Hope's Hemoglobin level was 8.9 (cut-off is 8). It actually raised itself from 8.6. Unfortunately, her ANC dropped more - now 416. A little worried about that. Really want that to start rising so we can do the surgery and get it over with.

So, the kids and I took advantage of a free day. We went to Potter's Alley (pottery painting place)to pick up our pieces from last week. Didn't mean to stay, just meant to pick up, but the boys hadn't been there in about two years. They wanted to stay and paint. So from about 10 - 1:30 we painted. Hope did a rice bowl with chopsticks. She painted Chinese characters on it. Came out very cool. Liam did a large mug/soup bowl. Since he survives on noodle soup - very appropro for Liam. Skyler and I worked on a chips and salsa platter (one of Sky's favorites). I stenciled on a lizard and we painted the platter then the lizard. They all came out very nice. Now have to go back next week to pick them up after they've been glazed and fired. As much as we like the place, hopefully won't stay next time we're there. It can get pricey with four people.

We then went to Terhune Orchards in Princeton to pick blueberries and raspberries. Missed the raspberries, though. Almost all picked over. But the blueberries were perfect. And the blackberries were just starting to ripen. Should be ready by next week - yea, my favorite.

Came home, rested for half an hour, then John came home and we went to see "I, Robot", (with Will Smith). Interesting premise. The boys thought it was very cool. It is rated PG-13, though. Some cursing and a little blood. Might be scary for little ones.

Our weekend should be kind of quiet. Connie & Danny were possibly coming down from Boston to bring a truckload of stuff over to store, but they're pretty tired from going back and forth this past week. They'll probably come down next weekend.

So, looking forward to a quiet weekend. Hope everyone's weekend is what they want it to be. Love to all!

Tuesday, July 13, 2004 8:45 PM CDT

Hi.

Well, Hope's surgery for tomorrow has been postponed. Her ANC dropped from the high 600's to the mid-400's. Unexpected and upsetting. We were hoping to get this part of her treatment over and done with. Oh well, it's always worked out in the past when things were delayed. We're assuming it will again.

They have postponed it for two weeks, in hopes that her ANC will come up on her own and she won't need shots to bring it up. In the meantime, she's been scheduled for a CT scan and an MIBG scan for next Tuesday and Wednesday. Hopefully, it will show if the past MIBG Therapy did anything to her tumors.

Hope also had a platelet transfusion today and will most likely need a red blood cell transfusion by Friday. It seems she needs platelets at least once a week and Hemoglobin every two weeks. Excuse my soapbox stance but -Please, please, please give blood if you are able. There is such an extreme shortage -which we have experienced once. So many children are in need, not to mention adults. You are truly saving lives.

We'll have to see about our summer vacation. We were hoping to try to go cross-country for the month of August, but now, we'll have to see if we can go later. If we can't, we'll figure out something else.

It's been a long day. I'm tired. Bye for now and love to all.

Monday, July 12, 2004 4:47 PM CDT

Hi.

We've been having some problems with our computer this last week. We could get in for a little while and then it would shut itself off. We'd reboot and it would shut itself off again. Seems to be fixed now thanks to John's patience.

Can't write long - off to a friend's birthday dinner (Happy Birthday Becky!). But just wanted to say Hi and say we're doing fine.

Hope will possibly go in for surgery this Wednesday. We'll find out for sure tomorrow when we get her lab results back. Her ANC (infection fighting cells) has to be over 1000 and her last reading on Friday was 678. It's slowly coming up on it's own. Yea!

They'll be placing her GJ tube (feeding tube) and might even pull her broviac (central line), but they keep going back and forth on that one. We're meeting with the surgeon tomorrow at 10:30.

Otherwise, we've had a fun last week. The boys were in Cub Scout Camp - so Hope and I took advantage of it and did a lot of day trips to Lahaska, Rice's Market, Belmar, Potter's Alley and such. It was a lot of fun. But today was big-time cleaning day - den and both of their bedrooms. Not so fun.

Love to all!

Friday, July 2, 2004 12:13 AM CDT

Hi.

This has mostly been a quiet week for us. Monday we stayed in pajamas all day. Tuesday, I had a doctor's check-up and we just laid low the rest of the day. That evening I went to see "Stepford Wives" with some girlfriends. Definitely a good movie to see with your girlfriends - very funny. Not like the the first one, which was made to be creepy. This was just "campy" and funny.

Wednesday, Hope, the boys and I went to CHOP for Hope's platelets infusion. We came home in time to see the opening day of "Spiderman 2". The kids liked it - I thought it was very cartoonish. But as Hope points out to me, that's a good thing since it was based on a cartoon. That evening, we caught the Montgomery Fireworks - always very, very good. Our friends, the Clintons, came from Bridgewater for the second year in a row to catch them, too. We wound up going to the Hillsboro Diner for late night dessert with them. Always fun to hang with good friends.

Yesterday, we went to sign up for the summer program at the library - late, as usual. Then at 3:00, I took Sky to the doctor's, since his summer cold - which seemed to be getting better - decided to take hold again. He spiked a fever and his cough was worse. Wanted to rule out pneumonia or bronchitis. Unfortunately, it was the very beginning of pneumonia. So, he's on antibiotics now, too. He looks fine and says he feels fine, but just couldn't stop coughing. But I knew something was definitely wrong when he said he didn't want to eat on Wednesday evening. Our sons are ALWAYS hungry.

Today, Hope and I will be on our way to RWJ soon for red blood cells. This takes longer than platelets so we'll probably be there into tonight. John is on his way home from work to stay with the boys.

Believe it or not, this has been a good week for us. Aside from poor Skyler being sick. But, he's just as happy not to be doing anything and watching cartoons and playing GameCube all day.

Hope everyone's 4th of July weekend is spectacular!

Love to all.

Sunday, June 27, 2004 8:33 PM CDT

Hi.

We're winding down from a hectic week. Actually looking forward to being home and laying low this week.

The kids and I were able to get to Wildwood last Monday - Thursday. We didn't arrive until 4:00 but were able to hit the arcade and boardwalk during the evening. Tuesday we had to travel to CHOP for Hope's platelet infusion. We got back to WW about 6:00, had dinner and then hit the arcade and boardwalk again. Even took one of those "old-time" photos.

Wednesday, we went to the Cape May Zoo and ran into a family friend (Charlie Paulikas) and his family. We were hoping to meet later on the boardwalk and let his kids and mine ride the rides together but we weren't able to work that out. My sister Susan arrived around 4:00 and we went for a nice dinner and let the kids ride the rides again. Unfortunately, Susan's car started to make some weird noises and buck soon after she arrived - even though she had just had it worked on for two days back at home.

So, Thursday, morning we dropped it at a local garage. They were able to fix it in a few hours, luckily - turned out to be ignition wires. In the meantime, we hit the Hereford Lighthouse - worth the trip in itself. It's small, but the small gardens are beautiful and it overlooks the ocean in the back. It's really a lovely little spot.

Then, hit the arcade again - to finish out playing and turn in the accumulated tickets. And since I sat through 4 days of arcade noises, I made the kids play the bingo game at "Fascination" - the game on the boardwalk where John and I met 23 years ago and made them listen to my reminiscences. It did make me miss John all the more. It was very, very weird being in WW without him, since it has sentimental value for us. We then had a nice dinner out and later rode some rides for the last time.

Sadly, John's Aunt Teddy passed away last Sunday. She was a great lady and will be sorely missed by all those that love her.

The kids and I left WW around 9:30 pm, so I could be home in time for Aunt Teddy's funeral on Friday afternoon. Hope also needed more bloodwork taken on Friday - so John took her to RWJ in the morning, while I caught up on some sleep.

John and I went to Aunt Teddy's funeral. The sermon, given by her son-in-law, Pastor David Louder, was very moving. And the eulogies, given by a family friend and her son, Mark, were both funny and tear-jerking. Sadly, we got separated from the procession line and a few of us missed the cemetary. We arrived just as they had finished. It's really a beautiful site, though, if that can be said. Aunt Teddy and Uncle George raised a wonderful family and their love for each other is strong. They are also loved by those around them.

Today, the kids and I went to the HRC Sunday School picnic after church. We couldn't have asked for a better day -weatherwise. It was gorgeous. The many kids and adults seemed to have a grand time. Volleyball, softball, boardgames, water-balloons, hula-hoops and free ice cream from the ice cream truck. All and all, a very fun day.

The upcoming week will bring more bloodwork, platelets, probably hemoglobin, too - which takes longer. Otherwise, I think we'll be home most of the week. Hope's ANC (neutrophil count - the cells that fight infection) are starting to drop again. This was known, it's part of the aftereffects from the MIBG Therapy she had almost 5 weeks ago. So, she'll probably start on the GM-CSF shots again this week. They help rebuild the cell count. My guess is, she'll have all the scans and tests again in a week (or two). She has also been scheduled for her GJ tube surgery on July 14th. For the next month, we'll be taking care of Hope's medical needs, with the hope that we will have August off for a vacation.

Love to all.

SEE More Pictures and Videos by clicking on the link below next to "More Pictures and Videos".

Monday, June 21, 2004 11:30 AM CDT

Gemma, Hope and the boys just took off for Wildwood. They'll spend a week down there while dad stays home and works.

Hope's graduation was tremendous. There are roughly 400 kids in her class. Mr. Robbins asked that all applause be held until the end otherwise it would take several hours to read everyone's name. Hope was the third one called and the crowd immediately started to clap. Then all of her class stood up and she got a tremendous ovation. Thanks to all who attended and applauded - it really touched us.

There is a new link below that if you click on it and then click on Hope's Graduation you can see a short video of Hope getting her diploma and the crowd reaction. There is also some other pictures there you can look at and the This is Hope video from An Evening of Hope.

Hope also got confirmed this week so it was quite eventful. They deserve the week in Wildwood.

We also had a very nice Father's Day at my sister's house. Happy belated Father's Day to all the dads out there.

On the treatment side, just as Gemma was leaving for the shore this morning the Hospital called and said they scheduled Hope for her operation to have her broviac line removed and to insert her gastro line. Gemma "declined" to do it this week and they'll re-schedule it - probably in a couple a weeks whenever the hospital can do it.

Gemma will not have access to a computer in Wildwood so this site will probably not be updated this week.

Thursday, June 17, 2004 1:42 PM CDT

Hi.

Well, tonight's the big night for Hope - her 8th grade graduation! I dropped her off at 12 for practice today and there are SO many 8th graders. Hopefully, we'll be able to get an overview picture tonight and put it on the website.

It's been a busy week for us. On Monday, Connie, Hope, my friend Stacey and I went to NYC to participate in a CureSearch event. We were also able to catch a free concert in Bryant Park called "Broadway under the Stars". There were about 15,000 people there and it was videotaped to be shown on PBS (I think) Saturday night. Bronson Pinchot was host and there were other Broadway stars there - Edie Falco, Christie Carlson Romano and others. It was a nice event.

Tuesday morning, we were up at 4:30 to be at the outside windows of the Good Morning America set. The organizers for CureSearch handed out t-shirts and posters. The plan was for the weatherman to come out at 8:05 am and talk with someone from the group. There was a possibility it would have been Hope. But, instead, he came out and spoke with a woman with an infant named Sawyer (like Diane Sawyer - I guess), then he did the weather and that was it. The organizers were not happy. We were the first ones there at 5:30 am and were on camera for all of a split second. Oh well.

So, we had breakfast and headed home. Hope was tutored for the last time this year, but around 2:30 we got a call from CHOP saying Hope's platelet count was 6 (6,000). 20 (20,000) is the cut-off. So, we had to head into CHOP asap for platelets and blood. We arrived around 4:00 and got home around 12 midnight. Needless to say, I was tired - so John took the nightshift. Two cities in one day - pretty cool if it was for fun.

Yesterday, I had Hope rest. Then we went to the mall to pick out a graduation outfit and shop for some summer clothes. A much more restful and fun day.

Off to pick up Liam from school. Sky is home with a cold - lots and lots of sneezing. Tomorrow's their last day - hope he can make it.

Congratulations to Tim & Sonya (Bertelsen) on the birth of our new nephew Kyle Glen! Love the pictures.

Love to all.

Saturday, June 12, 2004 9:00 PM CDT

Hi.

Just a quick update:

We want to thank everyone who contributed to our very successful "Alex's Lemonade Stand" today. We made $93.00 to be donated to pediatric cancer research! If anyone is interested in Alex's story (an 8 year old girl with neuroblastoma who seems to have the same clinic times as Hope) check out www.alexslemonade.com. It's really an amazing tribute to what one person can do - even a young girl.

The last couple of days have been nice. We held a garage sale yesterday and today. Hoping to make room in our carriage house to store some of Connie and Danny's things. They will be moving to the Boston area in about a month. They are moving from a house to a condo - while they familarize themselves with the area. So, hopefully we can help them out a little in the process.

Hope & Jeanne FINALLY got their Rube Goldberg project to work. You should have heard the cheer that came from the house! After multiple weeks of many trial and errors - it was definitely a learning project in scientific principles for Hope. But I think they enjoyed the ripping apart even more.

Hope everyone is enjoying this absolutely gorgeous weekend. Love to all.

Wednesday, June 9, 2004 4:26 PM CDT

Hi.

Just got back from CHOP. We're now in the phase where Hope's platelet and red blood cell counts have to be watched closely. When she had her labs drawn on Monday, it showed she would need platelets soon. Her red blood cells were still good.

So, off to CHOP for clinic today and a platelet transfusion. Usually a pretty easy process - and it was - except just as we were about to leave. After the nurse took Hope's vitals to make sure she was feeling fine, she unhooked her and we were getting ready to leave, when Hope said her eye was itchy. I took a look and, sure enough, it was swelling. Just enough to keep us there under observation for another 45 minutes or so. Luckily, that was the worst of it and the swelling didn't spread to other places.

Thank you to Jeanne for picking up Liam and Sky and feeding them dinner tonight. She is such a big help to us!
Not only does she tutor Hope but she watches our boys, too. We really have wonderful friends.

We're off to L & S' band concert in a little while. Have to go iron their clothes.

Other good news: Hope has been given the "thumbs up" to attend her 8th grade graduation next week, even without a mask - yea!!!! Plus, we can start thinking about going on a vacation this summer. They'll try to work around our schedule (unless an emergency occurs, of course). We were very, very happy.

Love to all.

Monday, June 7, 2004 1:04 PM CDT

Hi.

Still pretty quiet here on our end - thankfully.

Hope is being tutored right now, still working on her Rube Goldberg contraption. She has two more weeks of school, so they're trying to finish up as much as possible in the remaining time.

Hope is slowly starting to eat small portions again. She had lost about 6 pounds during her last treatment. But this past week, didn't drop anymore - yea. She is still on saline with dextrose IV solution for 12 hours every night. It's to keep her hydrated and give her vitamins and minerals. It seems to help with her weight, too.

Hope and I were able to get to the Bridgewater Mall for an hour today. She was happy. First time we've been to a mall since her stem cell transplant back in January. Couldn't stay long, but it was just enough. I was able to zip her around in a wheelchair, so we zoomed through the mall in record time.

We were, also, able to see Harry Potter on Friday at noon. Aunt Connie met us there, and the three of us saw it together. The theater was very large and only had about 50 people in it. I'm really liking going to the movies at these times - noon or 4:00. There's hardly anybody in them.

Liam was sick with some nasty stomach bug on Friday night, all day Saturday and part of Sunday. Aunt Connie handled the brunt of it Friday night. She is really the BEST Aunt! I'm not sure I would have been such a good aunt. We're hoping the rest of us bypass it.

Time to go pick up L & S soon. Love to all.

Wednesday, June 2, 2004 1:34 PM CDT

Hi.

We're just in a holding pattern for Hope right now. She is to have her blood drawn and lab tests twice a week. Then, probably go to clinic once a week - not sure yet if it has to be at CHOP or can be at RWJ (Robert Wood Johnson). She will have scans and tests again in about 5 weeks to see what, if anything, the MIBG therapy accomplished.

She is finally feeling better today. Saturday and Sunday she was just nauseous and I thought she was almost finished with the side-effects. But on Monday, she was very sick all day and night. By yesterday, she was sore and tired. Today, though, she is bright and perky and ready to take on the world again.

We went to see Shrek 2 yesterday afternoon. They allowed her to start going to the movies and the mall again, but only when there aren't a ton of people there. There were about 15 people in the theater yesterday. It was a good time to go. It was nice to see her laugh again. Funny movie, if any one hasn't seen it yet.

Today, she was able to start tutoring again. Hoping to finish up her Rube Goldberg assignment. She and Jeanne are working on adding as many steps as they can to push down a hand sanitizer pump. Should be interesting.

Have to go get my boys in a couple of minutes.

Love to all.

Sunday, May 30, 2004 8:15 PM CDT

Hi.

It's been such a nice weekend so far. Glad we got to come home to good weather.

Went out for lunch yesterday, picked some strawberries at a local produce stand and then rented some movies for the evening.

Today, after church, John played golf while I took the kids to a small street festival in Lawrenceville. Kind of an old-time Memorial day town celebration. The kind where they decorate bicycles and have a parade. Pie-eating contest. Plus, lots of small games. It was like a step back in time.

Aside, to Mark & Patty Bertelson. So sorry to hear about your broken foot, Mark. We at first didn't know what to do with ourselves today. We're so used to setting the day aside for your annual get-together and seeing all the Bertel(sons). Hope you heal quickly and you're not in too much pain. Looking forward to Labor Day instead.

Thanks to Sharon & Jim for a wonderful dinner tonight. As always, the food was wonderful and your company even better.

We'll be heading up to Aunt Connie & Uncle Danny's tomorrow to pick up Teddy so they can go up to Boston for a few days.

As for the hospital, it was one of the "easier" procedures Hope has had to endure. She was still sick but not as bad as chemo. She will be scanned again in about 5 - 6 weeks to see if the radioactive medicine did anything to her tumors. We are very, very hopeful.

Hope everyone has a wonderful Memorial Day holiday.

Saturday, May 29, 2004 10:48 AM CDT

Hi.

We're home!!!!

We're going to go out and enjoy this beautiful day with the 3 men we missed so much.

Thanks for all your prayers and entries. They always keep us strong.

Love to all.

Friday, May 28, 2004 11:43 AM CDT

Hope had some more difficulty prior to going to sleep last night, but the night itself went OK. She has a scan scheduled for early this afternoon.

Also, her radioactivity levels are close to the come home threshold - they'll re-check after the scan. So she may come home possibly today or tomorrow.


See an article on Hope in Thursday's Star Ledger Living Section. It talks about Hope and her friendship with Zoe. I couldn't find a link to it. I'm not sure if its in all the Star Ledgers or just the local version.

Thursday, May 27, 2004 10:52 AM CDT

See an article on Hope in today's Star Ledger Living Section. It talks about Hope and her friendship with Zoe. I couldn't find a link to it. I'm not sure if its in all the Star Ledgers or just the local version.

Hope had a rough night with nausea. But she's feeling much better today and they took out her catheder which is a sign that her radioactive levels are coming down. She could possibly come home over the weekend.

Monday, May 24, 2004 6:59 PM CDT

Gemma can't get to a computer for a couple days. Hope got her treatment this afternoon and is doing OK but has had some unpleasent moments. Both her and Gemma must wear Geiger counters.

Hope can do whatever she wants in the room, but then we'll have to throw it away. So Gemma got her some magazines and puzzle books.

I left Gemma's last update below as it gives details on the treatment that some people may not have gotten to yet.

Hi.

Just an update: We're here at CHOP and Hope will be starting the MIBG Therapy tomorrow. We arrived here at 8:30 and then proceeded to sit in the isolation area for 5 hours before the MIBG Therapy room was ready. Not bad really, just not the most comfortable place to sit for 5 hours.

You should see the room. Plastic on the floors, light switches, handles - sinks and doors, and many other places. I cannot sleep on the new beds because they are not as easy to clean as the old ones - so the new beds are brown papered off. We cannot use the closet or drawers so as not to spread the radiation around. So, I decided to keep as much in the car as possible and go back & forth as needed.

Hope will be taken to surgery tomorrow for a quick sedation to put in a catheter. Since it will be considered toxic waste, I am guessing it has to be placed pretty securely. Then sometime between noon - 3:00, she will receive the MIBG infusion (MIBG stands for the radioactive medicine that attaches itself to the neuroblastoma cells - some people asked). The infusion will be given via a pump over a two hour period and from that point on - Hope will be radioactive.

Although, they told us this, I didn't fully realize the things we couldn't do for the next few days. We knew Hope would have to stay in bed to record the radiation levels she's emitting, but we thought she could do things while in bed - like read, do crafts, etc... We found out today that this is not true - unless we don't want to bring any of it home. So, she can read a newspaper but cannot do the homework she brought (she's broken up about that!). She cannot read the books she brought or do the crafts we brought to keep busy. So, it will be a whole lot of tv for the next few days.

I cannot touch her without gloves on. I will have to wear a hospital gown and booties. Plus, I will also have to wear my own mini-version of a geiger counter. Everytime I leave the room, I will have to put the counter on an out of room table so as not to pick up other radiation levels around the hospital.

There are lead shields around her bed. We knew this but I thought they would be a bit smaller - so I could still her. But unless I stand up, I will not be able to see her, or she me. It was just a bit surprising to me.

There is only one chair (the chairbed) in the room. They do not want to encourage people staying long. So, even John cannot stay long unless we switch for a while.

The procedure itself should not make Hope very sick. Most children don't feel any side-effects at all. We are hopeful this will be the route for Hope, too. So, aside from her being radioactive, we are hoping for a quiet time here. I would love to say we can catch up on sleep, but she will need to take two medications by mouth every four and six hours around the clock. The nurses will knock on the door and I will take it, and then give it to Hope. They must limit the nurses exposure since they deal with 4 - 5 patients a month. This way, in case there was a real emergency, they can come in and treat Hope.

Have to head back into the room now.

Love to all.

Sunday, May 23, 2004 9:16 PM CDT

Hi.

Hope and I will be going back into CHOP tomorrow morning. We're supposed to be there at 8:30 am to be admitted. Unfortunately, we still don't know what kind of treatment she'll be given. It will either be the MIBG therapy or chemo. Hopefully, the doctors will know more by the time we're admitted. Very frustrating and anxiety producing.

Depending on the treatment, we should be there about a week. So sorry to be leaving home - it's been such a nice two months.

Hope added 3 new pictures to the website, if anyone would like to see.

Love to all.

Thursday, May 20, 2004 8:50 PM CDT

Hi.

First - a HUGE CONGRATULATIONS to our dear friends, Kristine & Steve (Tim & Marlene, too) on winning the Powerball - the newspaper said nearly $84 million! If anyone saw Good Morning America yesterday or saw any of the NJ or PA newspapers, they were featured. It really couldn't have happened to better people! We were so excited for them that we were yelling. I can't imagine what they first felt.

Today was a picture perfect day. We finally made it to The Grounds for Sculpture. It was gorgeous - the place and the weather. Definitely worth seeing more than once. Aunt Connie, Hope and I spent about 4 hours there and easily could have stayed another hour or two. We'll have some new pictures soon on the website. I even learned how to take pictures with the digital camera and they came out great. I was very surprised.

We were lucky enough to be able to go to the Girl Scout Bridging ceremony on Monday night. It's a ceremonial crossing over of a bridge that moves the girls from one level to the next. It was very well done by the Senior GS and moved very smoothly. Although Hope had to wear a mask and only stay for a short while, it was still worth it. She was able to get out of the house and participate in something from our old life. It felt right. Congratulations to Kat & my GS Troop 60 - for bridging from Cadettes to Senior GS. It's hard to believe they're all such young ladies now when we remember them so clearly as being Daisy GS (Kindergarteners). As of next year, most of them will have been in our troop for 10 years! Time flies way too fast.

We will be speaking with Hope's doctor probably tomorrow or over the weekend about where will be next week. Her LFT's are very slowly coming down but probably not fast enough. My guess is either chemo or more scans to figure out where we go from here. We would love to pretend we can stay home forever, but hopefully some day in the future we will be.

It's been a nice, regular week at home. I had actually lost count of how long we've been home. I thought maybe 6 weeks but realized it was 8 weeks! It's been so wonderful.

Love to all.

Sunday, May 16, 2004 6:56 AM CDT

Hi.

We're still home - yea!

The Star Ledger will be doing a small story on Hope and her friend, Zoe. Hope had submitted a short piece to their "Flavor of the Month" column - a column geared towards kids and teens. Their topic was "Best Friends". We thought it would just be a few sentences along with many other entries, but we guess the reporter liked their story and asked if she could write a small story about them. The photographer was here yesterday and took some photos of them. We'll let you know when it appears.

Otherwise, we're just enjoying our freedom. Didn't get to the Grounds for Sculpture yet, due to the heat. We're hoping to go this week since it's supposed to be cooler.

Happy Birthday to Grandma B. and Uncle Michael.

Love to all.

Wednesday, May 12, 2004 7:34 PM CDT

Hi.

First, a very Happy Birthday to Aunt Connie!

We will be home for the next week or two now. Hope's LFT's did not come down, so she cannot get the MIBG Therapy yet. They feel they can wait another week or two before they give her any treatment. If her LFT's do not come down in time, they will have to consider another chemo treatment - something we are hoping to avoid at all costs.

Otherwise, we are happy to still be home. It has been the longest stretch since Hope was first diagnosed. And we are very much enjoying this gorgeous weather.

We're hoping to maybe go to the Grounds for Sculpture tomorrow or next week. It will be a "field trip" for an art assignment for Hope. Luckily, it's all outdoors. Just have to be cautious of the sun and heat. So happy to be able to go out.

Love to all.

Tuesday, May 11, 2004 6:37 AM CDT

Hi.

We had a lovely, lovely Mother's Day. I hope you all did, too. After church, we took advantage of the beautiful weather and walked around some gorgeous gardens. We also stopped at an uncrowded restaurant and ate outdoors. All in all, it was a wonderful day.

We are now just waiting for blood test results that were taken yesterday at Robert Wood Johnson Cancer Institute. The results will determine how we spend our week. Whether we will be home or admitted into the hospital. Unfortunately, RWJ's computers crashed so they had not been able to send the test results over to CHOP by the last time we spoke last night. So, it's just wait & see.

After RWJ, Hope and I were able to walk around a park in New Brunswick and later joined John for a picnic lunch at Roosevelt Park in Menlo Park. We are just trying to take advantage of the beautiful weather as much as possible before we go back in. And since Hope cannot go into restaurants or stores yet, we are so happy the weather has been accomodating.

Today is just cleaning day - at least with the windows open.

Love to all.

Friday, May 7, 2004 3:18 PM CDT

Hi.

Sadly, Hope is not qualified for the MIBG Therapy Study anymore. Her LFT's (Liver Function Tests) remain high. Since MIBG affects the liver, her liver has to be functioning as close to a normal baseline as possible and it's not even close. They were hoping by taking away her TPN, her LFT's would drop closer to normal. Instead, they went up a bit. Hope's tumor, ever since her surgery, is still coating her liver - so that may be it also.

She still will be able to get an MIBG Therapy - hopefully 2 weeks from now. But she will not be put into the tandem MIBG Study. So, she will still receive this high dose radioactive medicine, which we are thankful for (how weird - happy about your daughter being radioactive).

I'm a firm believer in "things happen for a reason". Not sure what the reason is or if we will ever know, but who knows; the tandem therapy may have done more damage than good.

Today went well. Things moved very quickly today - which was a nice change from yesterday.

Hope all the mothers out there have a wonderfully happy day on Sunday. Enjoy yourselves and your family. We are looking forward to a family day. Hope has been given permission to walk around a town, with her mask off - maybe we'll walk around Princeton. Can't go into stores yet but we're happy with being able to see more than our house and the hospital.

Love to all.

Thursday, May 6, 2004 8:31 PM CDT

Hi.

Well, two days down and one to go.

Yesterday, Hope had her PET-scan at HUP. It went very well. It was almost easy, aside from the valet parking. If you're ever at HUP, don't valet park. The parking is down the block and across the street. It'll be a whole lot easier and shorter to park yourself.

Today was long and painful for Hope. Thankfully, we're home for the night, though. We left at 6:45 for what should be an hour trip, but takes 2 hours during morning rush hour. We arrived at 8:45, had her blood and labs drawn and then she was supposed to be put under anesthesia for her bone marrow aspiration. But, they decided that since Hope was the oldest and had VRE back in February (Vancomyocin Resistant Enterococcus)that she should instead be the last one undergoing a procedure in the treatment room. So, we wound up sitting and waiting from 9:00 until almost 1:00. We could have stayed home and slept a little longer. Oh well - typical for us.

Her aspiration went quickly and she was given Morphine. Thank God for morphine. It is really amazing stuff. She was able to lay down in the Day Hospital for a couple of hours with her CT-scan contrast dripping in.

Around 3:30 we went to get her MIBG injection. Unfortunately, while there, she threw up the nose tube they had placed in under anesthesia. Number 4. I give up on nose tubes. Awful, awful things.

Around 5:15, they took her in for her CT-scan. It went very quickly, thankfully. After a long day, it was nice to have something go smoothly and quickly.

We were home by 7:15. In time for the big t.v. night. And, of course, John's birthday. We celebrated last night, though, so tonight was just leftovers from our big Korean dinner yesterday.

Happy Birthday, love.

Love to all.

Tuesday, May 4, 2004 8:49 PM CDT

Hi.

Just want to fill everyone in on Hope's schedule now that we have it.

As of tonight, she has been taken off her TPN. It has been affecting her liver too long. There is a real chance that if her test results remain high, she will not qualify right now for the MIBG Therapy. Tonight she will be unhooked - the first time in a very, very long time. Tomorrow they are sending IV saline so that she stays hydrated. She won't be getting the calories, though. She does eat but not nearly enough to maintain herself. Hopefully, she won't be without nutrition for long. They have decided to wait until after the first therapy for her G-tube. They are worried the timing of the surgery and the therapy are too close.

Tomorrow we have to go to HUP (Hospital of the Univ. of Penn. - right next to CHOP) for a PET Scan. They don't have this machine at CHOP. It was explained to me that this scan will test the metabolic rate of her cells (?). It helps in their determination of her therapies (I think). Some of these terms are getting beyond me. It's the first time she's had this scan. Maybe by the second one, I'll understand it all better.

Thursday we have to be at CHOP early for labs, then anesthesia for a bone marrow aspiration and biopsy. Then an MIBG injection. Then a CT Scan at 5:00. Long day and it's John's birthday. She was under anesthesia last year on this day and will be so again. Seems weird.

Friday we will meet with the Dr. in charge of this study at 8:30. Then an ECHO & EKG. Then her MIBG Scan at 1:30.

This will all be done on an outpatient basis. We will get to stay home on the weekend. After they see the results of these tests, hopefully, we will be at the hospital Tuesday to begin her MIBG Therapy. If all goes as planned, we'll be there for 5 - 7 days.

Keep your fingers crossed and please keep the prayers coming. We are hopeful this therapy will help Hope.

Lots of love.

Sunday, May 2, 2004 2:23 PM CDT

Hi.

It's been a pretty nice few days. Aunt Connie was here on Thursday and Friday. She and Hope spent some time working on a very elaborate puzzle (our thanks to Lisa Y. - we think). It has a woman (fairy?) blowing bubbles and each bubble has it's own world in it. It's all blurry water colors and very, very pretty. Connie said it's the hardest puzzle she's ever done. And that's saying something. She, my mom and Hope are all expert puzzle people. Just to drive Connie crazy, we picked up a brand new stained-glass window puzzle at a garage sale over the weekend. I don't know if she'll ever want to come back.

Grandma and Grandpa B. were here Friday and Saturday. Grandma was able to hang out with us at the HRC Rummage Sale on Friday evening and Grandpa was able to go to L & S' soccer game on Saturday. John and I even got to go out to a late dinner Friday night, since Gr'ma and Gr'pa were here. It was a nice visit. Our thanks, also, to anyone who came to the HRC Rummage Sale. It was a great success! All the proceeds will now go to a village in Africa who are building a medical clinic - the only one for many, many miles.

Well, tomorrow morning I will call CHOP to find out when all the tests are scheduled for this week. My guess is we'll be there Tues. - Fri. There's also a good chance now that Hope'll have the G-tube in soon. Her liver function tests keep coming back high - due to the TPN (IV nutrition). But they won't be able to do the MIBG Therapy until her liver tests come back more normal - since the therapy itself can sometimes effect the liver. Hopefully, everything will be scheduled and the timing will all work out.

It's been so, so nice being home these last few weeks. We mostly got into the routine of our normal lifestyle again, except for Hope, who still needs to remain mostly isolated at home for a few more weeks. She is starting to get a little cabin fever. Hopefully, the doctors will start lifting the restrictions sometime soon.

Love to all.

Wednesday, April 28, 2004 8:28 PM CDT

Hi everyone.

Hope and I went to her clinic appointment today. We hadn't had to go back to clinic since she had her nose tube placed and her scans done almost 6 weeks ago. Then she had her T-cells nearly 3 weeks ago. It was so nice not to have to go back and forth every week. We've very much enjoyed being home and just having the visiting nurse, Karen, come by once or twice a week.

Her appointment went well. It was just a check-up and talk about upcoming treatments. We'll have to schedule tests and scans for next week. There's also the possibility of her G-tube (tube placed in the stomach for feeding) being surgically placed next week, with the added possibility of her broviac (central line) being removed and a bone marrow aspiration done at the same time. We're hoping they can all be done at the same time - this way she will only have to be under anesthesia once instead of 3 times.

The rest of our week's been crazy. Our septic seems to have finally decided to die (or at least, become mostly incapacitated). We have to give a shout out to Dutchtown Nursery (also Septic repair). After having previous septic companies years ago (when we were thinking about a pool) tell us that they'd have to dig up our whole yard to find the septic field, Jason (from Dutchtown)just walked around the yard, eyed where the 3 laterals were, and dug small holes and found all 3 pipes - I was mightly impressed. I love when people know their job! We thank them and Brogan Septic for their quick response and caring attitude.

If anyone is interested in Rummage Sales - Harlingen Reformed Church is having one on Friday from 10 - 8 and Sat. starting at 8. Corner of Dutchtown and Rt. 206. Been setting up all this past week. Lots of good stuff!

Love to all.

Friday, April 23, 2004 7:32 PM CDT

Hi.

Still pretty much normal days here. Tutoring, cleaning, school, Scouts, and tomorrow is "Dump Day". Our town has 2 days a month where you can dump stuff at the local center, which happens to practically be across the street from us. People tease me because they know how much I love Dump Day. It's like a holiday! The physical act of throwing stuff into a dumpster just makes me so happy.

As for Hope - her nosetube came out for the 3rd time in as many days, so I refused to put another one in until we spoke with the doctors about the possibility of a surgically implanted G-tube (gastric tube) instead. Although it is a very quick procedure to place an NG tube in, it is not pain-free. So, after 3 days I (as well as Hope) had had enough. I don't know why the first one stayed in a month and the next 3 came right back up. It's really pretty awful. The doctor called back tonight and will talk with the Attending physician on what we should do next. In the meantime, she is still getting some nutrition from her TPN, and she ate a small amount (but good for her) of her favorite dinner tonight - Bulgogi - a Korean BBQ steak dinner. Unfortunately, her tongue still has lesions on it from the intubation tube. They are slowly, slowly healing but it impacts what she can eat. For some reason, cheese - one of her all-time favorites - makes her tongue itch and swell. So, until they fully heal, we are trying to figure out what she can and can't eat yet. It's always something!

Otherwise, we're enjoying our days at home. Lots of crafts. Hope you all have a great weekend.

Tuesday, April 20, 2004 12:02 AM CDT

Hi.

Sorry for the delay in updates. I thought John had and he probably thought I had.

Things here are fine. It has been a quiet week of just doing "normal" things. Hope is being tutored every day again and we are just in the swing of doing household things.

I just returned from meeting with the Child Study Team about next year's schooling for Hope. We are planning on keeping her tutored at home, with the hope of eventually returning to school maybe mid-year in her 9th grade year. Jeanne just arrived for her 1 1/2 - 2 hour tutoring session.

Hope has been feeling stronger every day. Still walks slowly and doesn't like doing the stairs very often, but she is very alert and feeling more like her old self.

Now, if only the nose tube would cooperate. Unfortunately, it came up on Sunday. So, the visiting nurse had to replace it yesterday. Then, frustratingly, it came up again last night. So, another one will have to be placed again today. It makes me cringe each time; I can't even imagine having to undergo the quick, but not pain-free, procedure multiple times. Hope has been so, so brave through it all.

Well, we're off to run errands while Hope's being tutored. Hope everyone's days are bright and sunny.

Love to all!

Tuesday, April 13, 2004 6:33 PM CDT

Hi.

Hope everyone's Easter was nice. Ours was. Hope has been asking to make bread for awhile and since we had a whole day to ourselves, we attempted Easy Yeast Rolls. Four hours later (!), they were done. They weren't too, too hard and they came out very pretty. Tasted great with melted butter, too. I think we'll use the bread machine next time, though, or maybe Pillsbury.

We added a new picture of Chris and his dad. Chris is the 11 year old boy who cut his hair off for children's cancer research. It was a great event. His principal spoke, Pennington's mayor spoke and then I spoke (shaking knees and everything). It went well. Then, the big event was Chris and his dad getting their hair shaved off. Very brave folks! Chris' mom, Maggie and I spoke the other night and the great news is they raised $4,000! Way to go Chris and Houston! If anyone is looking for a great fundraiser, check out St. Baldrick's.

We're hoping for a quiet week after last week's excitement. We're also hoping for some sun.

Love to all!

Saturday, April 10, 2004 8:57 AM CDT

Hi.

Yesterday was an interesting day. What started out as a trip to CHOP for a parent/doctor discussion turned into a weird day of crossed signals and frantic phone calls home to get Hope to CHOP ASAP!

John and I went to CHOP for an 11:30 appointment with the doctor who will be conducting the MIBG Therapy study that Hope will be in. First, 11:30, then noon, 12:30, 1:00 rolls around. He was very, very busy.

But in the meantime, a nurse comes over to us and asks us where Hope is. I told her we left her home with John's sister and brother since this was just a parent/dr discussion. She thought Hope was supposed to get lab work done but we had that done on Tuesday at the TPN clinic. She still seemed a bit confused, since she said the dr. had written some notes about Hope being there.

A short while later, she returns to tell me that Hope's stem-cell doctor would like to speak with me on the phone. I said, "okay", but thought that was odd since he was not the doctor we were supposed to see.

It turns out, there was a miscommunication between doctors and Hope was supposed to be there to receive her T-cells - RIGHT THEN!!!! They had started to grow them two weeks ago and they were now defrosted and waiting for Hope.

So, in a bit of a panic, I called home and Anne and Phil (John's sister and brother) ran around getting things ready to bring to CHOP, just in case we had to stay overnight. Anne was able to get Hope there in an hour and a half.

So, the happy ending to that story is that Hope received her T-cell infusion. T-cells are Therapeutic cells that they collected during her "harvesting" months ago. They clean them and make sure there are no tumor cells in them, and then grow them to make more. They are then given back in hopes of them growing and fighting the tumor cells. This is all experimental and there is no guarantee that they'll do anything. But it was worth trying and we are hopeful.

In the meantime, the doctor we were supposed to meet with, is now under the impression that we are busy trying to get Hope and he continues on with other patients. So, John and I are just sitting still and waiting for him and Hope. It's now 2:00, and finally, after asking a few times and getting no reply, I spot a nurse that Hope often has. I ask her to get involved and she sends out the nurse case-manager. She was able to clear up all the misunderstandings and we were led into his office.

So, the thrust of this discussion is, that Hope will be put into this MIBG Therapy study. She was supposed to receive one treatment on her original protocal but this study involves two. She will hopefully start it on May 11th. Then two weeks later, receive the second. Then on "Day + 56" she will possibly receive the remainder of her stem cells back.

After John and I research and read about this a bit more, I'll explain it in more detail.

Well, sorry for the novel, but that was our interesting day yesterday.

Happy Easter to everyone who celebrates. We will be spending ours - for the very first time - by ourselves at home. Usually we celebrate the day before with my family and Easter day with John's. It will be quiet but we are looking forward to it. Today is Easter egg-dying day.

Wednesday, April 7, 2004 11:00 AM CDT

Hi.

We visited the TPN Clinic yesterday at CHOP. TPN is the IV nutrition Hope has been receiving since last May. She is also now receiving nutrition through the NG tube. Each run over 12 hours through the night.

The TPN Team is hoping to start weaning her off the TPN and keep her on the NG feeds for a while. One: the TPN is processed through the liver and not the stomach, and is not good for the liver in the long run. Two: they're hoping to see if she can maintain or gain weight through nutrition that is digested through her stomach.

They will be cutting back on the fat in her TPN. They're hoping it will help slow the vomiting. Her new TPN will be delivered tonight, so we're hoping to see a change in the next few days.

We're supposed to meet with Dr. Maris on Friday, who is conducting an MIBG Therapy study. The MIBG is the nuclear scan used to track her neuroblastoma. But the machine has recently been used to kill neuroblastoma cells, also. The only thing is that it will make Hope radioactive for about two days afterwards. Our own superhero! The room itself is wrapped in plastic. Our understanding is that the procedure is 90 minutes long with little side effects (hopefully). It will wipe out her bone marrow again, though, so they are considering giving her her remaining stem cells. We will hear more on Friday and also hear about her CT scan and MIBG results from last week.

Otherwise, things are nice here. Hope is doing crafts and the boys are playing some made-up card game.

Love to all!

Sunday, April 4, 2004 9:35 PM CDT

Hi.

Well, so much for a quiet weekend. Luckily, nothing with Hope, though.

Skyler asked me this morning, "what's happening to the toilet?" I rushed downstairs to see the toilet overflowing all over the floor, down into the basement (yuck, yuck, and more yuck!). John was able to get it to stop running. But we had to wait a few hours for a plumber.

The plumber worked for about 3 hours, drilling tree roots out of our pipes. All works fine now. But, I wonder how long it will take for the tree roots to grow again.

Ahhhh, the joys of an old house (it will be 100 years old next year).

Hope is fine. Still having some problems with her meds but she's at about 50% percent now. Better than a week ago. She actually went one and a half full days without getting sick. Hopefully, we're on our way to all good days.

Friday, April 2, 2004 2:52 PM CST

Hi.

Still pretty quiet. Almost too quiet (aside from the GameCube game on in the background). Looking forward to sunny days. These gray ones make us all sleepy here.

Hope had her MIBG scan yesterday. We're waiting to hear from our doctor about the results of it. Hoping for good news.

We'll be off in 1/2 an hour to a St. Baldrick's event in Pennington. St. Baldrick's is a foundation started by 4 Irish men who decided to do more than share a pint on St. Patrick's Day. They decided to raise money for Children's Cancer Research. What started out as an idea to make $17,000 on the 17th, has turned into over $3,000,000 raised. The idea is for participants ("Shavees") to ask for pledges and then shave their head, so they have a common understanding of how children with cancer feel after chemotherapy.

We have been invited to speak about how Children's Cancer has affected our lives. An 11 year old boy - a very brave and caring boy - will be shaving his head at 5:00 today in the Pennington Market complex.

If anyone is interested in the website, I just typed in St. Baldrick's and it brought up a lot of information about the foundation. They even had some celebrity endorsements, like Jay Leno and the magician David Blaine.

Wish me luck. I'm not the best public speaker (although those who know me, know I can talk your ear off privately). But since raising money for children's cancer research is a cause we now firmly and wholeheartedly believe in, I had better learn to speak publicly. It is such a good cause and direly needed.

Thursday, April 1, 2004 7:56 AM CST

Hi.

Hope's CT scan yesterday went okay. Not great, but okay. She couldn't keep the nasty contrast down, whether we gave it to her by mouth or through the nose tube. The doctor decided to take the scan anyway. I'm not sure how great the pictures will be. We should find out by early next week.

We're heading back to CHOP in a few minutes for her MIBG scan. We had to wait nearly two hours yesterday for her MIBG injection. They were just very busy. It's usually not like that. Weird part is that they didn't have an isolation room for Hope. So we wound up waiting in the hall outside of the Outpatient Registration. Too many people in the room. She had her mask on but I still thought it was weird.

For the first time last night, her feeding tube pump worked correctly. It actually delivered the proper dose in the proper amount of time without too many alarms. Finally! I was starting to go crazy with it.

Aunt Connie was here yesterday and was supposed to stay a few days, but started to feel ill last night. After both of us fretting about whether she should stay or go, we decided it was better to be safe than sorry. Problem was, she lives an hour and a half away and it was 11:00 pm. But she drove home anyhow. I felt terrible but truthfully, if she did get very sick, I would have had to isolate her upstairs, like the boys, and it's yucky to be sick in someone else's house, in someone else's bed.

Otherwise, things are quiet here. Should be a very quiet weekend. Maybe we'll do more photo albums.

Love to all!

Saturday, March 27, 2004 5:00 PM CST

Hi.

We survived the boys' 10th birthday party. Actually, the boys were all really good. Much different from when we spent half our time there when they were in 1st and 2nd grades. Unfortunately, the only one who needed Tylenol was Skyler, since he is prone to migraines. Luckily, he lasted through the party.

Hope is adjusting to the NG tube. Her penicillin is staying down this way. Yea! Tonight the visiting nurse should come back (for the second time - pump malfunction) to teach us how to set up her nutrition through the tube.

John, after watching "the 17th hole" on some tournament (really, how many of them are there?!) just had to "go hit a few" while we still had some sunlight. It's truly an addiction.

Love to all.

Thursday, March 25, 2004 11:28 AM CST

Hi. Just wanted to update on our clinic appointment yesterday.

Hope, unexpectedly, received an NG tube (nasogastric). It goes into her nose and down to her stomach. The doctors have decided to start her on this now, so they can try to give her nutrition this way. In the meantime, she will be weaned off her IV nutrition and the plan is then to pull out her central line (broviac) asap - probably in 2-3 weeks.

They have told us there's a much greater risk of Hope getting a line infection after a stem cell transplant. So, our hope is that her nutrition needs can be met through this NG tube. But with her past malabsorption issues, it really is just a test. They'll follow her weight closely and see what happens.

They have said the next step will be radiation but have not given us a set date yet. They would first like Hope to have a CT scan and an MIBG scan (a nuclear scan that lights up neuroblastoma). These are now scheduled for next Wed. and Thurs. Then, they will review them and decide when radiation will start.

Hope is slowly adjusting to the NG tube but is not happy about it at all (I wouldn't be either). We are hoping it makes giving her meds easier but today will be the first day we try that.

So for now, the next few days will be quiet. The next big event for the Bertelsen family is Liam and Sky's 10th birthday party this Sat. At a video game and sports place. I'm definitely going to have the Tylenol handy.

Tuesday, March 23, 2004 11:36 AM CST

Hi Everyone,

Here's my second attempt. I was previewing the entry and wanted to add a sentence about the age of visitors and, with my limited knowledge, it disappeared instead. Makes me crazy.

Anyway, Hope is okay. We've had some wonderfully quiet days the last few days. She is still weak and receiving PT twice a week. The other days, she does their outlined exercises on her own. She is still having problems keeping her meds down but we are looking into options for that. Hope's tutor, Jeanne, has been sick with a cold, but luckily, there's email. Hope is working on the Continental Congress right now. No rest for the weary, right?!

People have been asking us "what's ahead?" Truthfully, we don't know. Hope and I go to her Clinic appointment tomorrow and, hopefully, they will give us some direction as to where we are headed. My guess is Radiation, I just don't know when. The one thing we do know is that Hope won't be receiving a second stem cell transplant. The first one was very rough and did some damage. The second one would just be too much for Hope's body to take. We are more than okay with this.

Hope is allowed visitors over the age of 14. You must wash your hands, wear gloves and a mask - which we have. We have already had some people stop by for a quick visit and it is always a day brightener for us.

Hope will not be allowed out (except doctors' appointments) for at least another month. The doctors will let us know when and where she will be able to go. Most likely, it will be to places without a lot of people. She will need to slowly rebuild her immune system. The last places she will be allowed to go are school, church, movie theatres and the mall - all her favorite places, of course. But also places with many, many people - much too risky for Hope right now. Since we knew we'd be quarantined for awhile, we set aside lots of photos and are putting together Creative Memories albums right now. We are working on Hope's album right now. Makes the time pass nicely.

Love to all. See John's recent photos.

Saturday, March 20, 2004 5:52 PM CST

See some new photos.

Just came home from the Church spaghetti dinner fund raiser for Hope for Hope. There have been so many fund raisers, we are still so amazed and thankful for all your support. But even more for your emotional support - Gemma was so happy to see some of her close friends.

Saturday, March 20, 2004 6:06 AM CST

Hope is relaxing at home reading as much as she can. Gemma is organizing and cleaning and I'm back to working long hours - hopefully only for a short period.

Hope can have some visitors for short periods. No small kids, no colds and you may have to wear a mask (we have them by the back door).

See the article on The Evening of Hope from the local newpaper http://www.zwire.com/site/news.cfm?newsid=11111219&BRD=1091&PAG=461&dept_id=425695&rfi=8.

Tuesday, March 16, 2004 7:53 PM CST

Thanks to everyone for your welcome home messages. Its still amazes Hope and us how many people check in and it warms our hearts.

Hope shoveled the snow filled driveway today - not quite. She's feeling well but is having trouble keeping her medicines down. This may require her getting shots instead - obviously not an option she's thrilled about.

Monday, March 15, 2004 7:10 PM CST

Hope and Gemma have landed. They came back home to a house decorated on the outside by Girl Scout Troop 50 featuring streamers and a large Welcome Home banner - thanks, girls!

The Evening of Hope Committee is hard at work writing thank you notes. Our thanks to them for all their dedication and support.

Monday, March 15, 2004 8:35 AM CST

Hope and Gemma will be heading home later this morning. It's been almost 8 weeks since they went in for the stem cell transplant. After being in Intensive Care for 4 weeks, Hope has made a miraculous recovery. Again, she continues to amaze the doctors (and the rest of us).

She's almost back to her pre-stem cell transplant state, but she'll require more physical therapy at home as her legs and body are still weak.

Also, she'll need to be somewhat isolated from the outside world. I'll publish more details on this for people who may want to visit.

Our house will be a home tonight.

Sunday, March 14, 2004 6:46 AM CST

Gemma came home on Friday and Aunt Anne stayed with Hope Friday night. My mom and dad stayed with the boys. I actually got some free time with my wife so we went to the Nausau Inn for dinner and stayed the night.

On Saturday morning, Gemma and my mom (the white tornado) cleaned the house in preperation of Hope coming home Monday or Tuesday. Hope had some visitors on Saturday and I went to the hospital so Gemma could continue to clean.

The boys had a great birthday. Thanks for your cards and gifts for Liam and Sky - they were so excited. They're getting to an age where they won't be as excited for future birthdays, but this one they were so happy they jumped up and down and screamed.

Wednesday, March 10, 2004 9:17 PM CST

Hope is still doing good. She's standing and moving about. And she's back to reading voraciously. And there's a chance that she'll be back home early or mid next week - they said that she may be able to do her physical therapy at home.

Hope is not sure where February went. She has no recollection of February. About her only memory of February is a specific hallucination she had.

I can't wait to get her and Gemma back home after 7 weeks.

Liam and Sky - happy 10th birthday on Friday!

Monday, March 8, 2004 2:08 PM CST

Hi All -

I see John hasn't been able to update this site over the weekend, so I have an hour to pass while Hope is being tutored. Don't worry, I won't use the whole hour to update - although for those who know me, you know I could.

Hope had a good weekend. She was able to withstand being off her oxygen for 5 hours on Saturday. We were very happy with that. Her lungs have been badly damaged by the chemo and she still has a problem with the lower left lung, so her being able to withstand being oxygen-free for even a little while was a happy day.

She is able to stand for a few minutes now without anyone holding on to her. She can even take some steps around the room - however, she is tethered to the wall due to her oxygen, so she cannot walk far yet. Her physical therapist is hoping to get a portable oxygen tank in there tomorrow so she can walk further.

Her nose tube was extracted today. Yea! One more tube gone. Her IV nutrition is working better now and is not causing her to be as jaundiced. She is not receiving the same kind of medicines here in Onco as she was in PICU, so there was no need for the NG (nasogastric)tube for that use. They also use the NG tube to pump her stomach contents out, so she wouldn't vomit while she intubated. Since she no longer is intubated, another good reason to have it out. She was very happy to have it removed.

John and the boys were able to visit yesterday. I spent two hours walking around town and hanging out in a local arcade with Liam and Skyler. It was so much fun to be with them. John was able to spend time with Hope. She was happy to see her Dad. Liam and Sky were able to pop their heads in the room and wave at her. She liked that, too. She wants desperately to come home, so being able to see her dad and brothers helped a lot.

This week, the Onco doctors are almost finished weaning Hope from the Fentinyl (sp?). It was the drug they used to sedate her quickly if they needed to. Since it is a narcotic, it has to be weaned very slowly to avoid any withdrawal symptoms. Once it is weaned, and there is a private room in the Rehabiliation wing, we should be moved there so Hope can start more intensive physical and occupation therapy. We are hoping for Wednesday or Thursday.

See, only half an hour - not bad for me. Love to All!

Friday, March 5, 2004 6:29 PM CST

Hope had a busy day with tutoring, therapy, etc. She's still doing fine. She still gets a little oxygen to her nose. Hopefully, she'll start more intense physical therapy soon. She was able to walk a few steps today which surprised the physical therapist.

See pictures from the Evening for Hope at http://www.hopeforhope.com/volunteer_page.html.

We can't get the video on the HopeforHope site. If anyone wants it, send me your name and address and I'll figure out how to get it to you or to make copies with a pick-up site. It's too big to email.

Wednesday, March 3, 2004 9:19 PM CST

Hope is doing better. She sat in a chair for a few hours today. They are actually thinking of moving her to a physical therapy room where she'd get PT 3 times per day. After being in bed for 6 weeks, her legs and body are quite weak so the PT will limber her up. She's not on any special meds so we'll start talking about when she can come home.

See pictures from the Evening for Hope at http://www.hopeforhope.com/volunteer_page.html.

I have some copies on CD of the video my brother Phil made that was shown at the Evening of Hope. If anyone is interested in receiving it and can receive a 22 mb file via email, send me your email address. I'll also try to get it on the HopeforHope.com site.

Tuesday, March 2, 2004 3:22 PM CST

They removed her lung drainage tube this morning and everything went well. They also moved her to the new PICU wing so she got to be the first one to use her room. I just surprised them and dropped by - but Gemma is out of the room right now and Hope is getting tutored.

Check out the letter from the President in the photos!

The Evening For Hope was a tremendous success. The Committee did a wonderful job of planning and the events went off flawlessly. There were over 500 people there. Our thanks to all that made the evening such a tremendous event. See some pictures. Everyone seemed to have a great time - I know that Gemma and I did. We continue to be amazed by this community.

If anyone has some good pictures from the event, please email them to me at JohnBertelsen@yahoo.com. And if you have any video, please mail me a copy. Thanks.

Monday, March 1, 2004 4:24 PM CST

They removed the ventilator from Hope today and all went well. It was a bit scary for Hope since it was breathing for her for three weeks and several times while she was on it she felt like she couldn't breath - there is no scarier feeling. The next step is to remove the drainage tube from her lung which should occur in the next couple days.

Check out the letter from the President in the photos!

The Evening For Hope was a tremendous success. The Committee did a wonderful job of planning and the events went off flawlessly. There were over 500 people there. Our thanks to all that made the evening such a tremendous event. See some pictures. Everyone seemed to have a great time - I know that Gemma and I did. We continue to be amazed by this community.

If anyone has some good pictures from the event, please email them to me at JohnBertelsen@yahoo.com. And if you have any video, please mail me a copy. Thanks.

Sunday, February 29, 2004 3:41 PM CST

Hope is still doing well. The plan is to take her off the ventilator tomorrow (Monday). On Tuesday, the ICU department moves to a brand new wing so it will be much easier moving her if she's not on the ventilator. The new rooms are supposed to be beautiful and gigantic.

The Evening For Hope was a tremendous success. The Committee did a wonderful job of planning and the events went off flawlessly. There were over 500 people there. Our thanks to all that made the evening such a tremendous event. See some pictures. Everyone seemed to have a great time - I know that Gemma and I did. We continue to be amazed by this community.

If anyone has some good pictures from the event, please email them to me at JohnBertelsen@yahoo.com. And if you have any video, please mail me a copy. Thanks.

Friday, February 27, 2004 2:08 PM CST

Not much new to report other than that her lungs have remained clear. The thumping and misting med seemed to have worked - just hoping they stay clear. They've started lowering the ventilator settings so we're hoping they can take her off of it by early next week. So we're hoping for a quiet weekend.

Thursday, February 26, 2004 11:07 AM CST

They were going to do the bronchiscope this morning, but again her lung cleared up. They are attributing it to physical therapy which is just pounding lightly on Hope's chest and back. They'll do this now every 2 hours so we'll see if this keeps her clear.

They tried to put the feeding tube in last night. What is normally a 10 minute process turned into 45 minutes and they were not able to snake it down past her stomach. She'll have to do another scan or scope to see why they couldn't do it.

Hope is doing fine right now but she's a little upset that mom will be going home for a day or two.

Wednesday, February 25, 2004 3:26 PM CST

Hope has had an active day so far with several visitors from within the hospital. She will have the bronchiscope tomorrow. Also, they will input a feeding tube that will go down her throat and extend past her stomach and go right to the small intestine - so they'll need to do it with visual assistance from a fancy x-ray.

We also found out that she has an infection - one that will be very difficult to combat. We just found this out so we'll have to get more info.

Wednesday, February 25, 2004 9:10 AM CST

Hope's lung fogged up again so Gemma is discussing with the doctors to do the bronchiscope to clear them that way and to possibly see what is down there. They should be doing it either this morning or this afternoon.

Hope is actually feeling fine. Her oxygen level in her blood (saturation level) is fine - the dr's are unsure why it is so good with the cloudiness in her lung.

Tuesday, February 24, 2004 7:39 AM CST

Yesterday, Hope's lung cleared up. But we know that it could fill again so we are keeping our fingers crossed. I had mentioned to the PICU doctor several days ago that if she had mucus in their lung and we weren’t in PICU, that we’d probably give her some cough syrup or other simple medicine. He thought about it and said that they do have some medicine for that but they don’t normally give it to someone with a damaged lung. So after inserting another drain in her lung and siphoning off some fluid and her lung not clearing up, they decided to give her an asthma type medicine – and sure enough the lung cleared up. Hopefully, it will stay cleared up.

Saturday, February 21, 2004 7:00 PM CST

More of the same today. The ventilator settings are about the same and a surgeon opened discussions about another procedure possibly if her lower lobe in her left lung doesn't clear out on its own shortly. If so, we'd have to go back to square one for a third time.

On a good note, as of this morning the nurse found another drug to keep Hope calmer - vallium. Hope had built up a tolerance for the prior one that she was getting for that. So now she's not so distressed when she's awake. In fact today even though she can only faintly whisper over her vent, she was able to communicate that she wanted to do her nails.

Gemma got some good rest at Ronald McDonald house last night so when she came to the hospital, I was able to go home to see the boys today. It was great being with them this afternoon. Also, I was able to donate blood at the blood drive that the girl scouts held in Honor of Hope in the church today.

Friday, February 20, 2004 5:04 PM CST

Hi.

Things here are basically the same. Still in pain, trying to pull at lines, high settings on monitors and ventilator and not enough of the right pain medication. Occasionally, the combination of meds lets her sleep.

Sorry - wish the news could be better. Hopefully tomorrow.

John slept at Ronald McDonald last night and I've come over now to try and get some rest. Haven't really slept in 2 days and am pretty worn out. No good to Hope at all.

Thank you, always, for your love and support. I'm really not sure where I'd be without it and I'm sure John feels the same. Hope loves to read them when she is able to. You'll never know how much you all give us the strength to carry on.

To Bridget in Sayreville: Love your little prayer. It is perfect. I will pin it up over Hope.

To Sara, Becky and Jen: I love you guys. Thanks for the laughs.

To All: Much love from us to you!

Thursday, February 19, 2004 8:30 PM CST

The computers at the hospital are down so Gemma and John won't have access to their e-mail for a little while so this is Connie typing for Gemma.


Today we are on the loop part of the roller coaster. Last night was bad, this morning was better (Hope's lung reinflated from the pressure of the ventilator) and now we are basically right back to where she was last night. Hope will have an x-ray on her lungs later tonight to keep a close check on the status. The doctors increased the pressure of the ventilator to try to reinflate her lung. They did find the right pain medication so Hope is resting comfortably though, it's an "old-fashioned" medication from the 1980's (Gemma thought that was pretty funny)

Wednesday, February 18, 2004 1:38 PM CST

Hope had another decent night. They continue to wean down her settings on the ventilator with a small chance of getting it out tonight or tomorrow. There is still some fluid in one of her lungs, but for now it is not problematic and will not hold up taking her off the ventilator.

Some of the meds still have Hope a bit loopy and trying to pull on her lines. At one point, she had her hand under a sheet and started to peel off a corner of tape holding down a tube. When I stopped her I asked her if she was being sneaky - she shook her head yes. She also smiled today, the first time in 2 weeks. I also read to her and she seemed to enjoy it.

Hope was also able to scribble on a small white board and Gemma was able to figure out what it said - Hope was asking Why and How she got to this point.

Tuesday, February 17, 2004 9:33 AM CST

Hope is doing better. She's still on the ventilator, but she's getting combatative trying to reach for it and her other lines - so we know she's feeling stronger. The ventilator is still very frustrating for her as it seems to gag her. She can't talk to us yet but she keeps trying and occasionally we can make out a word or two.

She goes in for a CT scan later today. They'll take a closer look at her lungs as well as her abdomen which is a bit bloated.

Monday, February 16, 2004 9:13 AM CST

Another small step forward. They took Hope off the paralytic yesterday mid-day. By evening, she was starting to move her hands and toes and trying to talk - which, of course, she couldn't with the ventilator tube in her throat. Her numbers remained stable thru the night.

Sunday, February 15, 2004 9:41 AM CST

We took another step backwards last night. Hope is processing the Oxygen the ventilator gives her but is not expelling the CO2 as well as she should. So they needed to increase the pressure of the air from the ventilator. Unfortunately, that means that they had to put her back on the paralytic - so we can't communicate with her now.

After that was done at 3:30 this morning, her CO2 numbers returned to normal. They were happy they got her number to where it should be, but we were not happy to see Hope immobilized.

Her other numbers continue to fluctuate. They go up and down and the docs react by giving more or less of different meds. She had a fever earlier last night that required the use of a "cold blanket" that was a mat that had cool water circulated thru it that they put under her.

They also had to input another IV line. She has her port that has two lines. One of those lines had 8 lines hooked to it, the other has two. Plus she already had another IV line in her wrist.

Gemma is still a little worn down. Thankfully, my work project ended so I'll be able to stay down here this week.

Saturday, February 14, 2004 4:43 PM CST

Happy Valentine's Day to All!

We certainly can feel all the LOVE you are all sending. We are truly blessed.

Things here are quiet today. They are trying to find a balance between keeping Hope alert enough to start taking breaths above the ventilator settings; but also keeping her comfortable and not in pain from the realization of the vent tube, the suction tube and the nose tube all in her throat. In our opinion, they have not found the right balance yet. Unfortunately, I think there really is no "right balance" and Hope will just have to struggle through this part of it all. It's very hard to watch her try to say something and not understand what she is trying to say. We are all so very frustrated - especially Hope.

I wish we could tell you when the vent is coming out - but they just don't know. It could be a couple days or a couple of weeks. They said it would be "two steps up, one step back" and that's what it's been. They lowered her meds yesterday but had to raise them back up again today. Hopefully, tomorrow they'll lower them again.

Otherwise, I'm feeling a little better. Went to Ronald McDonald House almost all day and night yesterday and slept. John kept bedside vigil.

We hope you all experience as much love as we have received. It will make your Valentine's Day the best one ever.

With all our love.

Friday, February 13, 2004 1:45 PM CST

Hope is still progressing slowly. Her numbers continue to improve slowly. However, the doctors while encouraged, still tell us she's not out of the woods yet. They think she'll be in intensive care for at least two weeks! And, they think that she'll probably come down with some type of infection since she has so many lines in her - that could extend her ICU stay.

They've taken her off the paralytic(?) that immobalized her so she is starting to respond by moving her toes and lightly squeezing her fingers and raising her eyebrows. But she is still heavily sedated. Even so, you can see that she wants to "wake up". This is the hardest part for her and us as its too early to do that.

We're going to start playing CD music for her to keep her occupied and drown out all the noise from the pumps and alarms.

Thursday, February 12, 2004 9:36 AM CST

Hope had another decent night with no episodes. All numbers are slowly improving but we're not past critical yet as she's still on the ventilator and still sedated receiving numerous meds.

While Hope rests, Gemma's had a chance to rest. But now she's coming down with a slight cold so we'll have to keep her away from Hope for a while.

Wednesday, February 11, 2004 2:39 PM CST

Hope remained stable last night. So far today, she's shown small signs of improvement. She's still on the ventilator but they are starting to try to wean her off of some of the meds to see what her body can sustain. These are very small steps and she is still very much in a critical danger zone, but it is some progress.

UPDATE: Hope had an episode early this afternoon. Her breathing tube got clogged by gunk in her lungs and her breathing stopped. They quickly got a new tube in and stabalized her numbers. So she's back to where she was prior to the episode.

Tuesday, February 10, 2004 4:12 PM CST

Hope had a "good" night last night. "Good" is a relative term compared to the prior night. Good really means that things didn't get worse. She's very heavily sedated and on a ventilator to breath for her. She's also on several medications to assist her blood pressure and heart rate. They are also keeping a close eye on her kidney and lung functions while still addressing her back sores and temperture. While there were some encouraging signs, the doctors have warned us that things could at any moment turn bad.

It was a quiet night and Gemma got some much needed rest. Today we'll meet with doctors from Intensive Care, Oncology, Pulmonary and Infectious Disease as well as the Kidney doctors who I can't remember their name.

Monday, February 9, 2004 7:27 PM CST

Gemma here:
We want to thank everyone for your fervent prayers in Hope's behalf. Right now, she is, as they say "critically stable". She is heavily sedated and hooked to many, many monitors and machines but is holding her own, surprisingly. We weren't very sure she would be able to this morning. She is an amazingly strong person in heart and spirit, even if her body is not at the moment. Your prayers and generous wishes have helped sustain us and her through this very trying day - and we are so grateful for family, friends and even "unknown" friends such as you.

Right now, the feeling is Hope's white cell count is coming back with such a vengeance that it is wrecking havoc in her body. Unfortunately, it's a catch-22. Hope needs the WBC for her immune system, but her body is too weak right now to face the full frontal assault they're waging. So, we are in a wait and see period. Hoping that her body will withstand the assault with the machines help until the WBC calm down enough to let her own body start to heal itself.

We have a long way to go but please know we will be eternally grateful for all your love and support. It helps us face the long days and the even longer, scarier nights.

Monday, February 9, 2004 10:41 AM CST

Things are critical for Hope right now. Her lungs have fluid that they're having a problem draining. She's on a ventilator and they keep having to up the oxygen level. There are many things that could go wrong.

Thank you for your continued prayers.

Sunday, February 8, 2004 7:23 PM CST

Hope had a very difficult Saturday night. She was able to drink and took sips throughout the day and was doing well. But in the evening, her breathing became very labored, her oxygen saturation levels were low and she couldn't catch her breath. They put her back on lasiks to get water out of her and again restricted her intake and put her on an oxygen machine that forced air into her nose and lungs - very uncomfortable.

In the morning, her lungs cleared up again and she was good throughout the day. Hopefully the night won't bring more problems.

Friday, February 6, 2004 11:47 AM CST

Hope is much more stable today. She still has fluid in her lungs and they're limiting her to a few sips each hour. But at the same time, she is extremely thirsty and has written down all the drinks she's going to have once she can start drinking again.

She still has body soars and is peeling quite a bit of skin, but for now we're over the current scare. Hopefully this time it will be one step foward without the two steps back.

Thursday, February 5, 2004 1:13 PM CST

Hope was moved to Intensive Care a little while ago. I am heading down to be with them. Thank you for your prayers to give her strength and ease her suffering.

Wednesday, February 4, 2004 8:58 PM CST

The nurse tried to prepare Gemma for the worst last night. It was difficult. Hope's on very strong pain killers that are playing havoc with her mind and body. Its similar to how she was after the surgery with all the anesthesia and pain killer in her. They're trying to reduce her pain killers but also trying to keep her comfortable.

Its seems like such a barbaric method of treating a disease - load a person up with potent chemicals that brings them to near death, hope they survive it and hope it doesn't damage vital organs and functions. They'll probably laugh at this treatment in 100 years the way we laugh at blood letting.

Tuesday, February 3, 2004 8:03 PM CST

Hope has given us a scare over the past couple of days. Her pressure dropped, her temperature went sky high, her soars increased and her burns grew. They got the pressure back up a little and her temperature down a little and a trauma team to help with the burns. Now they just found out her oxygen saturation levels are low so they have her hooked up to oxygen.

Hope's a fighter, as is Gemma. Hope's battling the effects of the chemo and Gem is caring for her and battling the hospital which at times seems mired in bureaucracy.

Through this, Hope still managed to do schoolwork with the tutor and work the the physical therapist. She's a battler and I'm very proud of her.

Sunday, February 1, 2004 2:52 PM CST

Hope took two steps back today after taking a step forward yesterday. The soars multiplied and are painful. Her stomach is hurting quite a bit.

I couldn't stay with them last night. I developed a stuffy nose so I didn't want to risk passing anything to her. Unfortunately, that left Gem alone with Hope again. We can't believe that we'll have to do this again shortly after this one.

Saturday, January 31, 2004 8:10 PM CST

Hope is doing slightly better today. She is still miserable and getting sick, but not as much as before. But she just took a medicine that is giving her the shakes and making her cold. She just got some demerol and some warm blankets - hopefully she'll take a nap now.

When Hope was feeling better this afternoon, Gemma got to get out of the hospital and walk around for the first time in 2 weeks. She came back with a new hair doo.

Friday, January 30, 2004 9:44 PM CST

Hope is still struggling. The chemo has battered her insides and she is sick sometimes several times per hour as the chemo eats away at the lining of her stomach. The chemo is now attacking her externally. Her skin is peeling like bad sunburn and she is getting painful sores. She is getting morphine to help with the pain and things are just miserable.

Gemma is hanging in there but its tough. I'll be with them the next couple of days.

Wednesday, January 28, 2004 8:00 PM CST

The chemo is still bothering Hope quite a bit. But she's a trooper. She's been through it so many times that to her getting sick is normal.

She actually starts receiving the stem cells tomorrow. We were told that it was a quick 10 minute infusion. But now we hear that for this first stem cell transplant it will actually occur over two days and is several large bags. And that it will smell like garlic corn so they'll give her candy and lollipops to help offset the smell.

Gem, Hope: I miss you guys. I got used to having you both home there for a while. The house is not the same without you.

Sunday, January 25, 2004 8:36 AM CST

The chemo and other meds are beginning to bother Hope. She’s sick most of the time and mostly resting. We do get her up and walking a few times a day. She walks around the hallways. But once her immune system is compromised, she won’t be able to leave the room. This will happen over the next several days.

The showers every four hours stops today. But she must empty her bladder now every two hours now that they started a different chemo that they don’t want accumulating in her bladder. We also know that as some point she’ll start getting painful mouth soars and possibly lose more of her hearing.

Some have asked if this is her last procedure. Unfortunately, it is not. Her treatment plan calls for another stem cell transplant shortly after she recovers from this one. Then she gets her T-cells back (not invasive), possibly radiation and then six months of an experimental medicine where she’ll stay mostly at home and then multiple tests and follow-ups. Of course all of this is subject to change.

SEE NEW PICS.

Thursday, January 22, 2004 7:22 PM CST

Hope started the chemo this afternoon. Its the strong one that requires her to take a shower every four hours since it seeps thru her skin and will burn her.

She also had her hospital tutor stop by and got her working on home work. She'll also have a music therapist stop in periodically as well as an art therapist. Hope wants to start to learn to play the guitar.

Thanks for those who sent her some gifts. Please note that she can't have some things in the room including flowers, balloons, stuffed animals and some thing else Gemma told me that I can't remember. She did get to see the flowers that were sent, but they'll have to stay out on the nurses station.

Tuesday, January 20, 2004 12:47 AM CST

We are confirmed to start the stem cell transplant tomorrow. Evidently, we can proceed even with the "spot" on her lung.

So we're going out for Korean food tonight and then send Hope and Gemma to the hospital for a month (at least). The house will be very empty without them.

Saturday, January 17, 2004 8:37 AM CST

Hope's latest CAT scan revealed some problem in one of her lungs. It could be fluid or partially collapsed or something else. We'll find out Monday if they need to do something else and if the stem cell transplant will be delayed.

Hope is feeling fine. We're off to spend some family time together at the mall.

Wednesday, January 14, 2004 8:37 PM CST

Hope will be admitted to start the transplant treatment on Tuesday. They could have squeezed her in on Thursday, but they'd rather have the full staff there rather than the weekend staff during the first couple days of the chemo.

So we'll have another weekend at home - hopefully not too snowed in.

Monday, January 12, 2004 8:51 PM CST

More delays. We meet with the Stem Cell Transplant Team tomorrow afternoon and sign release forms. We may start the treatment on Thursday, but most likely it will start on Monday. So we sit and wait some more.

Wednesday, January 7, 2004 5:02 PM CST

Hope has been going to and will continue to go to the hospital each day this week for a series of baseline tests. This determines where she's starting from so that they'll be able later to see how much, if any, damage the stem cell transplant does to her.

For those who don't know, the stem cell transplant will be very difficult and dangerous. They completely wipe out her immune system with very strong chemo's and then give her the stem cells that they harvested from her earlier so that she can recover. The infusion of the stem cells is easy – it’s a ten minute procedure through her IV lines.
However, the dose of chemo that she'll get will be extremely high - much higher than the ones she's gotten in the past. In fact, one is so strong that she has to take a shower every 4 hours because it will seep through her pores and burn her skin.

The chemo will start on Monday or Tuesday. She’ll actually be somewhat OK the first week although a bit uncomfortable (quite an understatement). The real danger period will start the second week when the chemo takes affect and her immune system is depleted. Hope you all saved some prayers.

Thursday, January 1, 2004 9:46 AM CST

Happy New Year - hope everyone had a safe and fun holiday!

SEE NEW PICTURES.

Ends up they weren't admitted to CHOP so they came back home yesterday and then we went to Aunt Amy's were several cousins got together for a New Year's bash.

The plan now is that Gem will be taking Hope back and forth to CHOP all next week to do testing prior to the stem cell transplant. She'll get just about every imaginable test to make sure she's ready to proceed with the stem cell transplant. If all is well, the transplant treatment will start the following week. Get your prayers ready as the transplant process is another battering that Hope will have to endure.

Tuesday, December 30, 2003 7:43 PM CST

Hope and Gem came home today. Due to the many cases of influenza on the pediatrics floor, they felt Hope would be safer at home - not at the hospital or The Ronald McDonald House.

Unfortunately, Gem didn't have her keys and she couldn't find the hidden key. But it worked out well as Diane and Bill (our across the street neighbors)came to the rescue once again - and Diane just happened to have just made a big pot of chicken soup as well as some tapioca pudding and brewed some hot tea.

Tomorrow they head down to Philly for a checkup. Unfortunately, there is a strong chance that they may get admitted as they try to get her back on the TPN (nutrition thru her IV).

Sunday, December 28, 2003 6:23 PM CST

Hope is doing great. She's up and walking around, albeit a bit gingerly. She's back to normal mentally, if there is such a thing for a teenager. She moved to a normal room today and there were discussions that she could leave the hospital in a couple days. She'd still stay in NY for a couple more days after that to make follow up visits with the surgeon.

Thankfully, Hope doesn't remember any of the unpleasantries of the PICU. Now, we can look back and laugh at some of the happenings. During one moment, Hope was struggling with Gemma to take her oxygen mask off. At that point, she didn't even know who Gemma was. But she angrily told Gemma to "get your own mask!"

We finally got together with the boys yesterday and had a small Christmas celebration in Hope's room. It was nice to finally get together as a family for the holiday.

Friday, December 26, 2003 8:36 AM CST

We got a Christmas present earlier than we expected yesterday. They decided to move Hope out of ICU and back over to Sloan. The ICU really is not a good place for recovery - too much noise and sick people.

Back at Sloan, Hope is in a private room and the nurses can focus on some of the smaller things that go a long way to making her more comfortable. And she can get much needed rest - as can Gemma.

Hope is almost completely back to normal. No more halucinating and she remembers details. This has been a great relief to us. She still is on pain medication, but all of the other medications have dissipated from her body.

They will be taking the last few tubes out of her including the other lung drain tube and IV in her hand. All signs are stable.

Thanks to all. Gemma and I get inspiration from reading the short notes you all leave and so does Hope when she eventually is able to read them.

A special thank you to the folks at the Ronald McDonald House who go out of their way to make the kids feel the holiday spirit when they are away from home. I know they won't see this but you should all know that it is a wonderful, caring organization.

Wednesday, December 24, 2003 2:01 PM CST

Hope shocked us a bit yesterday. They pulled the ventilator, nose tube and one of the lung tubes and they gave her morphine. The combination of all that and all the leftover drugs caused her to start hallucinating and to not remember things - like her mom and dad and brothers. She did quickly remember mom, but the hallucinating really took over. After the initial shock, it was almost funny.

The doctors here and our pediatrician told us that its a temporary thing, but one doctor does want a neurologist to check her.

Hope doesn't seem to be in pain. But she's very restless. She didn't sleep for about 26 hours, but finally slept for an hour and a half this morning. Even morphine and benadryl couldn't knock her out any longer. This has caused her to be very irritable which combined with the hallucinations makes for a difficult time.

On the bright side, her vitals seem good. We'll spend at least tomorrow in PICU here at Presbyterian and then hopefully back to Sloan in a normal room.

Wednesday, December 24, 2003 11:00 AM CST

This is Connie filling in for John. I just spoke with John a short while ago and I am not sure when he'll get a chance to update the site so this is what he said. Hope is resting a little better now and is breathing a little better with the help of oxygen. They are even going to try to help Hope sit up today. She has had some difficulties recuperating but she is an amazingly strong girl and all the prayers must be helping. John and Gemma are trying to rest when they can and the Liam & Sky are playing with their cousins Mia and Giovanni today at Aunt Amy and Uncle Jav's house.
Merry Christmas to everyone.

================================
Please pray for Hope. She is struggling and suffering in intensive care. I am going back there now.

Monday, December 22, 2003 8:34 PM CST

They attempted to take the ventilator out today, but some issues delayed it so they will try again tomorrow morning. Otherwise, it was a usual day in PICU: fever, high then low blood pressure, fluids collecting in her lungs, drain a lung via a long needle and tube, diuretics, platelettes, other meds, etc. Even though the surgery went very well, she's gonna have several tough and uncomfortable recovery days. The doctors estimate that she has over 200 stitches and 60 titanium clips in her abdoman and the incision must be a least 12 inches.

On the good side, the room had a great view of the river. Some very large barges go up and down it guided by tugboats and there is a beautiful sunrise each morning.

Again, thanks to everyone for your prayers and thoughts. We hope Hope and Gemma will be home just after new years. I'll join back up with them with the boys on Christmas Eve.

Saturday, December 20, 2003 6:36 PM CST

We snuck ino the library next door to make a quick update. The library closes in 10 minutes so I'll type fast. I have me editor at my side. Not sure if the library is open tomorrow.

As Connie said, Hope is doing well. She still has numerous tubes coming out of her and a ventilator breathes for her. They will probably keep her on the ventilator until Monday. She'll remain heavily sedated until then.

Her incision is quite large. It goes across her abdoman from one side to the other. The stitches are under the incision - they will dissolve. And she has tape holding the skin together. She also has several titanium clips inside her that will stay with her. They will not set off aiport metal detectors.

Thanks to all for your prayers and thougths. We could definately feel them. Save some more for the next major steps to come in the near future - we will need them again several times.

Saturday, December 20, 2003 6:00 PM CST

Sorry for the late update, John was not able to get access on the weekend to the website so this is Connie again. Hope is doing very well. Her blood pressure is slowly stabilizing and she is resting comfortably. Dr. Laquilia feels they were successful in removing 90-95f the tumor and that the rest will be tackled by chemo after she recuperates. Gemma & John were surprised to see Hope's doctor from CHOP, Dr. Skolnik. He stopped in to visit Hope (and family in NY) - that's pretty special! Hope is now in the PICU at Cornell Presb. Med. Center across the street from Sloan, which does not have a PICU. Hope will not be able to receive flowers or gifts at the hospital. Thanks to everyone for the wonderful support and prayers the last few days - I'd say it's working! : )

===================================
Hi All! This is Connie filling in quickly for John, I'm sure they will update this site later with more details but Hope is resting comfortably this morning and doing pretty well.

8:00 We just met with the surgeon. He had previously alerted us to two possible problem spots. Those turned out to be OK.

However, he did see that her spleen was 4 times its normal size. He consulted with other doctors and then talked with us. We could wait and have the spleen removed later, but we decided to have it done now. This will result in Hope having to be on antibiotics the rest of her life.

He went back in to do this and then start closing her up - this should all take another couple hours.

=====================================


6:30 We got great news from the operating room. The doctor is still working on it, but he's got most of it out and he is very pleased. We couldn't have gotten better news.

Everything is stable. Not sure when he'll finish - it could still be long. A nurse told us he could take up to two hours just to close. We don't care how long it takes.

========================================

5:30 Hope is still in surgery. We've received updates that they are making progress but as expected its very slow. Pastor Bill has been here most of the afternoon and a friend who works close by also stopped by.

The day has really just been waiting and getting small updates - but small updates are much better than big updates. Will post more shortly.

=======================================


Hope went into surgery at 8:00 this morning. She had her usual attitude of "lets get it done" and knowing that she'll be sedated for a couple days.

We had a bit of a scare yesterday afternoon. Several doctors had told us that her recent platelette count of 31 was good and that she doesn't need more. However, yesterday the doctor here said he won't operate until she gets to 80. However, after discussions with our doctor in Philly, we decided to move forward. We were devastated when he first told us - no one had ever told us that he had much higher standards. Plus, Hope would never get to that level and would soon need another chemo wiping them out again. It was a difficult decision, but we really had no choice.

We all stayed at the Ronald McDonald House last night. It was kinda like a dreary hotel and was full of familes with sick kids. But they try hard to make it feel like home and its really quite amazing since most of the people there are volunteers. They had a nice dinner and Christmas party last night complete with Santa and presents courtesy of a local fire company - its truly amazing how many wonderful people there are.

I'll try to provide more updates if we hear any news. Sloan does have some PC's for the families in the waiting are.

Wednesday, December 17, 2003 8:24 PM CST

Hope and Gemma head out early tomorrow morning (Thursday) for a dr appt at Sloan to check blood, platelettes, etc. I'll be joining them later in the afternoon. Connie will be staying with the boys. We'll stay in NYC tomorrow night and then head over to Sloan for the surgery early on Friday morning.

Pastor Bill DeYoung and his wife, Diane stopped by for some prayers tonight and to provide support for all of us. We also enjoyed some great cheesecake with a thick layer of chocolate, berries and chocolate covered strawberries, one of Hope's favorite.

Dave Briggs also stopped by to introduce himself to us tonight. He recently ran in the Philadelphia Marathon wearing Hope's shirt and raised funds for Hope For Hope. He also brought a picture of himself crossing the finish line, hoping to inspire Hope to keep on fighting.

We are very thankful for such kind and generous people. For people who have known her for a long time, like the DeYoungs; and for those who have just met her, like Dave.

We hope to be in touch through this site as soon as we know enough information to pass it on.

We have been told that Harlingen Reformed Church will be open all day Friday for prayers. We have also been told that there have been studies done that show patients do better when they are prayed for - whether they know it or not. Please say a short prayer for Hope on Friday.

Friday, December 12, 2003 7:34 AM CST

The surgery is still scheduled for 12/19. Hope and Gemma will go in on 12/18 to see the doctor. I’ll join them later that night. We’ll be staying at the Ronald McDonald house during the surgery and recovery. So for now, it’s a waiting game. Hope has a tutor that comes to the house.

Special thanks to the teachers and students at Montgomery High School who participated in a fund raiser. During Homecoming week, Mr. Stern was the lucky “winner” and his reward was to kiss a pig at a recent football game. We saw the article in the Montgomery News - you can see the whole article on http://www.montgomerynewsonline.com/12MHS~Stern.htm.

We also saw a feature article in the Somerset Magazine on Bob Kuster and his hot glass company. The article mentioned the blue star ornaments that Bob made for Hope For Hope. Bob – thank you, they were wonderful and congratulations on the feature article.

I've started a temp consulting job going until the end of the month. I’ll take a few days off for the surgery. Thanks to those that have been using my internet shopping/travel sites (see links below). I’ll have to expand quite a bit more to have it pay all the bills.

Thursday, December 4, 2003 10:05 AM CST

Good news. The bone aspiration showed no cancer in her marrow. Also, the initial review of the other scans are that things are stable - hasn't grown and no new ones.

Since things are stable, the dr's are discussing going to surgery without doing another round of chemo. We tenatively have it scheduled for December 19th. We'll know for sure over the next day or so. Please pray that we can do it then and that Hope doesn't come down with an infection or other problem that would delay it.

Other News: I have opened an internet shopping, travel and marketing business. This business allows us to spend more time together as a family.

The shopping site links to many other shopping sites such as Macy's, Wal-Mart, Dell, Office Max, Disney, Sharper Image, Sony Music, Office Depot and many others. You will get the same prices and services as if you went directly to those other sites.

The travel site uses the same database (Saber) as Expedia.com, Travelocity.com and most other travel sites so you get the same prices as those sites.

You can link to both sites below.

Wednesday, December 3, 2003 5:36 PM CST

No update on the aspiration or scans. We'll know more in the next few days. For now we'll kick back and enjoy the time. The pain from the aspiration is slowing Hope down a little but its getting better each day. The shingles are healing but starting to itch.

I have opened an internet shopping, travel and marketing business. This business allows us to spend more time together as a family.

http://TBFMarketing.shopwize.com is a shopping site that links to many other shopping sites such as Macy's, Wal-Mart, Dell, Office Max, Disney, Sharper Image, Sony Music, Office Depot and many others. You will get the same prices and services as if you went directly to those other sites.

http://TBFMarketing.travelwize.com is a travel site. It uses the same database (Saber) as Expedia.com and Travelocity.com so you get the same prices as those sites.

You can link to both sites below.

Sunday, November 30, 2003 7:35 PM CST

Had a good Thanksgiving with the Forgione side on Saturday (see pics). Afterwards, the women (the gatherers) went shopping and the men snoozed.

Hope was happy to make it to church today and see all the friendly folks.

Bone aspiration tomorrow, cat scan Tuesday and MIBG nuclear scan on Wednesday.

Friday, November 28, 2003 9:25 PM CST

Hope and Gemma should be coming home tomorrow. Gemma's side of the family will be coming over tomorrow for Thanksgiving.

The shingles are healing. Now that they're healing they'll actually start to itch. No update on the next round of chemo. She will be going back to the hospital on Monday, Tuesday and Wednesday for the aspiration and scans.

Check back shortly for the Forgione (Gemma's maiden name) side of the family Thanksgiving pictures.

Wednesday, November 26, 2003 8:20 AM CST

Pictures added 11/23

The surgery has been postponed indefinately. The dr's are determining what the next steps will be. Hope will get another round of chemo - they just have to determine which ones.

They will be doing a bone needle aspiration. Hope is going through red blood cells at a high rate. Prior recent scans did not show any cancer in her bones but they want to do this aspiration to take a closer look. This will occur on Monday on an outpatient basis. They'll also do more scans.

The meds have helped quite a bit with the shingles. Over the last few days she had gotten some new ones, but no new ones today. Thankfully, they have not been painful which actually has suprised everyone.

Everyone have a great Thanksgiving. We'll enjoy ours knowing so many people support Hope.

Monday, November 24, 2003 9:13 AM CST

See new pictures.

Gemma took Hope to the hospital last night because the shingles seemed to be a little angrier. Good news is that they weren't bothering Hope, bad news is that she'll be in the hospital for a minimum of 5 days.

Our hope is that the stronger meds that she'll get at the hospital will heal her faster so that we can keep the surgery date next Monday. But at this point, we're not sure. The docs will be talking to the surgeon today to make that determination. We've asked our docs to push to try to keep it for Monday. If not, Hope may need to do another round of chemo since its been two months since the last one. This would delay the surgery much further.

Saturday, November 22, 2003 9:31 PM CST

Just came home from an early Thanksgiving dinner with the Bertelsen side of the family. Hope is doing good but having a hard time moving around with the shingles.

When we brought Hope to the hospital the other day because of the shingles, she was not admitted.

Thanks to all for praying for a quick recovery - it seems to have worked as they are starting to get better.

If anyone wants anymore girl scout cookies, Hope's troop is having a cookie booth sale tomorrow (Sunday) from 12-4 in front of the Montgomery Shop Rite.

Thursday, November 20, 2003 7:16 PM CST

Just when we thought we'd have a couple weeks of R&R prior to the surgery, Hope just came down with Shingles. Shingles is related to chicken pox and people with diminished immune systems are susceptible.

Shingles is very painful as it attacks the nerves. It does sometimes heal quickly - that's what we're hoping for so that the surgery won't have to be delayed. We'll know better over the next few days. Gemma asks that you pray that it heals quickly - otherwise, they may need to do another chemo before the surgery delaying the surgery even more.

Shingles is contagious via contact - it is not airborne. Hope has it on one side around her waist. If some one were to touch them, they would get chicken pox - not shingles (if they hadn't had chicken pox before).

Hope had her first ambulance ride up to Robert Wood Johnson - The Cancer Institute. This was required because she had too much pain to move around on her own or for us to lift her. Her pain is a bit less now and if it gets worse, she's got a prescription to help.

Monday, November 17, 2003 5:10 PM CST

After over a month of being confined mostly to a bed, Hope is feeling stronger and getting around much better. We made it to the Wizard of Oz here in Montgomery. It was a tremendous, big-time production - thanks to the Director, Moggie Davis, a very professional ensemble and dozens of volunteers.

Hope also made it to a Girl Scout function - Stress for Success, good for both Hope and Mom. They learned about hand and scalp massages. Hope had fun with the scalp massages on her bald head.

Thursday, November 13, 2003 12:13 AM CST

The surgery has now been moved to December 1. This will give Hope more time to get stronger and get her ANC count up super high. This is a definative date (hopefully). We'll also have more family time together with Hope feeling well and we'll have Thanksgiving with both our families.

Wednesday, November 12, 2003 3:20 PM CST

I'm at the Hospital with Hope getting platelettes and blood. Its a full day affair and I get to hit the Philly traffic both ways.

They still don't know what is in her lungs and at this point have given up trying to determine what it is. Now we'll just fatten her up for the surgery.

Monday, November 10, 2003 5:50 PM CST

Gemma and Hope surprised me today. When I picked the boys up from school, they showed up. They were at the hospital exactly one month - they went in on 10/10 and came home on 11/10. And now we have a mini break until 11/24 - the day of the surgery. We'll be back and forth to CHOP for blood work, but those are just day trips.

Its sooooo good to have them home!

Friday, November 7, 2003 5:49 PM CST

They did the needle biopsy and got some good material. They'll run lots of tests on it and figure out what it is over the next several days.

The procedure went fine. Gemma and I were talking at lunch prior to the procedure saying that a year ago if they told us that they wanted to put a needle thru her back and into her lung, it would have been a major issue. To us now, this is a minor procedure - but still had us very worried as there was a small chance it was a new tumor even though it hadn't showed as such on the MIBG scan.

Hope is resting now still groggy from the sedation and other meds.

The surgery has been tentatively moved to 11/24. We're hoping that Hope will be home prior to then and to celebrate Thanksgiving with our families the weekend before.

Liam and Sky: Daddy and Mommy love you. Mom misses you very much.

Thursday, November 6, 2003 6:29 PM CST

Still no determination yet as to what is in Hope's lungs, but they do seem to be clearing up except for a circular shadow in one of her lungs. They will most likely do a "needle" biopsy into it - this is much less invasive than a normal biopsy.

She also had a MIBG scan yesterday. This is the one where they inject her with radioactive material and run her under an x-ray type machine. The material goes to where cancer is and lights it up on the scan. Good news is that the prior tumors are much less bright and there are no new ones. There was a small scare when they saw a bright new spot but they suspected it was a false reading since it was so bright. She re-did the scan (the radioactive material stays for 48 hours) and it was not there this time. They suspect a drop of the material fell on her when they injected it.

Hope had visitors today. Aunt Amy and her family as well as our great friends the Snyder family came by. Sharon brought one of Hope's favorite dishes - fetticini alfredo.

Liam and Sky - Mommy and Daddy love you and mommy misses you so much.

See the Halloween pictures.

Tuesday, November 4, 2003 2:07 PM CST

Hope just came out of the bronchoscope and the procedure went fine. It was only a 10 minute procedure but she was under general. But she came out fine with normal blood pressure, temp and oxy levels.

The doctor said that they got a "juicy" sample so they'll try to grow things from it. It will take 2 days for initial results and a little longer for other results.

We won't know if they'll move the surgery for another day or so.

If you didn't see the Halloween picture yet, take a look.

Sunday, November 2, 2003 6:12 PM CST

No new updates. Tomorrow we'll see if they have to do a scope to try to figure out what's in Hope's lungs. She still occassionally gets fevers but her BP is stable.

We had a small halloween get together at the hospital yesterday. Three of Hope's friends came down in costume as well as Aunt Connie, Uncle Danny and Uncle Mike and also Liam and Sky. SEE PICTURES.

Thursday, October 30, 2003 7:38 AM CST

The lung doctors reviewed Hope's lung x-rays and want to start simple with an inhaler before they go to a bronchioscope or biopsy, but they still don't know what it is. Her BP dropped during the other night (bottom # in the 30's), but she quickly responded to fluids.

In some good news, the doctors did a close review of before and after scans of Hope's tumors and they feel that they did shrink about 30%.

Right now, we're still on for the surgery on 11/10. Her counts are still low but starting to come up. The BP thing may delay the surgery. The good news is that the doctors won't do another chemo if the surgery gets delayed another week or two.

Hope is slowly starting to eat again - just in time for some Halloween candy.

Monday, October 27, 2003 9:48 PM CST

Hope still has something in her lungs and the doctors are still scratching their heads. They've even talked about doing another biopsy but we're going to avoid that as much as we can - possibly even have Dr. LaQuaglia do it when he does the tumor removal surgery. Also, they found a kidney stone. Its not causing pain now so we may have Dr. LaQuaglia remove it also. And she still has intermittent fevers and her ANC count is still low. She can't catch a break.

She has been off the oxygen for extended periods and her oxygen/blood saturation levels are good so her lungs are getting oxy into her blood.

Through this, Hope is actually feeling well. She probably won't be home in time for Halloween and is quite disappointed. She can have visitors and would love to see you if you can. One of her friends stopped by the other day and it really lifted her spirits. And she was able to catch up on teen gossip. Contact Gemma at bertelsens@yahoo.com to arrange a visit.

Friday, October 24, 2003 5:18 PM CDT

Hope is doing a bit better. She still has a fever and some discomfort, but her lungs are clearing up. She got a slight bit jaundice and they looked for any blockages but didn't find any so they'll adjust her nutrition and see if that works.

The surgery has been moved back one week to November 10. But that date is somewhat up in the air as she needs to recover from her current issues and there's never a definitive time frame for that.

We're hoping that she can be home for Halloween.

Wednesday, October 22, 2003 9:24 PM CDT

Hope was moved down to Oncology this afternoon. She still has an issue with one of her lungs and her respiration is a bit rapid. You wouldn't know there were any issues if you talked to her - she seems strong and as happy as you can be after a week and a half in intensive cae.

They will be in Oncology for several days. Her ANC count is wallowing around 100 and refuses to jump up. But she's a quiet fighter.

Monday, October 20, 2003 8:18 AM CDT

Not much new news. Hope is still in ICU but will most likely move her today or tomorrow to Oncology. They are now treating her symptoms at a viral thing and gave her another medicine to treat it. Last time she got that med, she got the shakes. But Gemma remember that the nurse who treated her last time remembered that giving it to her a slightly different way made it easier on her. She received the new med last night and did not get the shakes.

No final word on changing the surgery date of 11/3. They don't want to officially change the date yet.

Saturday, October 18, 2003 6:11 PM CDT

Hope is still in ICU but things are stable. The docs are still not quite sure what's causing this but they have occasionally seen this. Her BP is under control - maybe now even a bit too high. She still has a fever and her lungs are slow to drain.

They are treating this with a wide array of anti-biotics and she gets benedryl and tylenol before she gets blood or platelettes: all of which make her very tired.

I stopped by the volleyball fundraiser this afternoon. It looked like everyone was having a great time. Thanks to all who participated and organized it.

Thursday, October 16, 2003 1:20 PM CDT

Hope had a setback this morning. She woke up and her blood pressure had dropped back down so they moved her back to Intensive Care. They're not certain what caused this so they must treat it with a wider assortment of antibiotics as well as BP medicine and fluids - at the same time making sure that they don't overfluid her lungs. This is really the first time that she a problem re-surface so we're a little concerned.

On a good note, her ANC count has started to come back up from the chemo.

This morning when her BP dropped (not nearly as much as the first time), the nurse asked her if she knew where she was. Hope was well aware of where she was but I told her next time to say that she was in Kansas.

Wednesday, October 15, 2003 11:17 AM CDT

Hope is feeling much better today. She's off the air mask but she is still getting oxygen. But now she can communicate much easier. They'll be moving her to Oncology if a room is available. They'll also be taking the IV out of arm that they had to put in when she came into ICU.

The docs just told her that she can eat anything, so we just got her a slushy from WaWa and the next thing she'll eat is a pomegranate.

Monday, October 13, 2003 3:51 PM CDT

Hope has had several rough days but now seems to be stable. The initial concern was the very low blood pressure. Treating that required a lot of IV fluids and her pressure has stabalized. She also had an infection. The combination of the infection and the fluids has now resulted in her lungs retaining liquid so they quickly cut back her fluids - which means that for the last few days she has not been allowed to drink anything. Just recently, after several pleas, they allowed her to have some ice chips.

She also wears an air mask with pressurized air to help force fluid out of her lungs and of course is given medicine to pee off extra fluids. And at the same time they are weaning her off of the low blood pressure medicine.

Hope is fighting strong. The doctors could not believe that she barely showed any signs of the low blood pressure. There were several doctors and nurses swarming around her barking out orders to each other and Hope sat there seemingly OK - she should have been unconscious.

She is much better now and somewhat stable but must still wear the mask, maybe for another day. Then they'll probably move her down to Oncology and stay there until her counts come back up. This will most likely delay the surgery scheduled for 11/3.

Aunt Helen: Sloan is in NY City.

As always, thanks for everyone for your well wishes, thoughts and prayers.

Friday, October 10, 2003 2:25 PM CDT

Gemma took Hope to the hospital this morning. Hope was feeling very out of it and requested to go - we knew that her wanting to go was not a good sign.

Once there, Hope was quickly moved to the Intensive Care Unit. Things got quite a bit dicey as her blood pressure dropped dramatically and she needed blood - and she had just gotten some Wednesday. They will be keeping a close eye on her. She'll most likely be in ICU for a while and then moved to Oncology - most likely for a lengthy stay.

The changes to the color and themes of ths website were made by Hope. I showed her how to make them and she's been playing with them - that's why you'll see that were clearly done by a 13 year old girl and not by a very young dad.

Wednesday, October 8, 2003 5:11 PM CDT

I took Hope to the hospital today for blood and platelettes. It's an all day affair - the worst part is the traffic to and from the hospital and the waiting in the hospital. Unfortunately, Hope had a reaction to the platelettes today that caused her quite of bit of discomfort. But they gave her a miracle drug that quickly offset it. The miracle drug is Benedryl - the same Benedryl we all use and they use it many situations there.

Hope's surgery at Sloan is scheduled for November 3 - so she'll be able to celebrate halloween, one of her favorite holidays. She'll need to get another CAT scan on October 15th for the surgery.

Monday, October 6, 2003 9:42 AM CDT

Hope is still struggling from the affects of the chemo. Its most likely caused by the build up of all the chemos she's received.

We were lucky that she felt well for a few hours on Saturday night so she made it to the first concert. Dominic Mantuano, America's Tenor, performed at the church and he was magnificant along with Jocelyn Wilhelm. He sang several songs right to Hope as we sat in the back including "You'll Never Walk Alone". See Dominic's website at http://www.theamericantenor.com/.

Friday, October 3, 2003 5:25 PM CDT

Hope and Gemma came home from the hospital this afternoon. Although it was only two days of chemo, this was a very tough round on Hope both physically and mentally and she's a bit run down. Hopefully, she'll be able to make it to the concert tomorrow night.

Tuesday, September 30, 2003 7:21 PM CDT

We’ve been back now 24 hours and we’ve just about recovered from vacation. We spent 8 days there, not counting get-away day. We made it to Magic Kingdom, MGM Studios, Downtown Disney, Animal Kingdom and EPCOT twice. A bus driver informed us that EPCOT stands for “Every Person Comes Out Tired”. We also made it to Sea World and Universal. But the boys were most impressed with the video arcade at the hotel.
Hope and Gemma loved the Cirque du Soleil show we saw. Even Liam and Skyler really liked it.

The weather was hot and sticky every day – typical Florida weather. But the local newscasters were excited about the “cold spell” coming in – a low of 88 degrees. They were serious!

We’re sorry to have been out of touch for a week but it was much needed family time (without doctors – besides constant telephone contact).

Hope and Gemma will head to CHOP on Wednesday for Hope’s 5th chemo treatment. The chemo will be 2 days but they will be there for at least 3. It is a repeat of the 2nd treatment, which, although short, was one of the roughest on Hope. We are hoping this time is better.

The plan, so far, is to then schedule the surgery for 3 – 4 weeks after this treatment. Hopefully, that will not change.

The first of the 3-part “Songs for Hope” will be held this Saturday night at the Harlingen Reformed Church. Dominic Mantuano will be singing. He is an amazing tenor opera singer. If you’re looking for a thrilling evening – this is it.

See new pictures!

Friday, September 26, 2003 6:58 AM CDT

We did actually make it to Disney. Aunt Anne gave us her frequent flyer miles, Aunt Connie had Teddy and Diane and the nurses are taking care of the cats and the rabbit and off we went. Will update you all more when we get back on Monday.

We're having a great time!

Friday, September 19, 2003 7:37 AM CDT

See the update from yesterday on our visit to NY to see the surgeon.

We're planning on taking a family trip to Disney next week. Unfortunately, last night Hope wasn't feeling well so we took her into CHOP. Hopefully, she'll be OK and we can still take off tomorrow.

The below is a letter that will be put on the www.hopeforhope.com site:

To All Our Friends, Family and Hope Supporters:

The TV show, The View, was holding a contest that highlights how communities have come together to rally around a cause. Unfortunately, we found out too late to submit the Montgomery community. Surely, Montgomery would have won based upon how you all have rallied abound Hope and our family. So many people and businesses have provided so much to Hope and our family. We feel very blessed knowing that so many people care.

In our community:

- The Harlingen Reformed Church has provided financial and emotional support and friendship. Pastor Bill DeYoung has been at our sides at the hospital several times when things looked bleak. The congregation has provided constant love and caring. We will be forever grateful.
- Gemma’s sister, Connie, has been right there with us acting as surrogate mom to our boys, Liam and Sky. Just as importantly, she is a great sister and friend to Gemma and us. Also, a thank you to Connie’s husband Danny for being more than understanding and supportive in her many absences from him and their business.
- Kathy Martin has been unbelievable! Her skills for organization, leadership and communication and her tenacity, energy and creativeness are surpassed only by the love and conviction that she has for our family.
- Our families have been tremendous. Hope’s Aunt Anne has provided her boundless energies and intelligence and is an inspiration to Hope and us. Uncle Phil has provided his spirit and close friendship to Hope. All our families have been close and just knowing that they are by our sides helps tremendously.
- Our good friend, Carol Clinton, from Bridgewater. She designed and continually updates the Hope for Hope website. She has been more than patient with our frequent requests. We are thankful for her talent.
- Belle Mead Hot Glass owners Bob and Sheila Kuster have worked tirelessly in keeping up with the great demand for the ornaments. They have provided these at no cost to us. They are obviously skilled and dedicated artisans and more importantly community members giving back to the community.
- Roberta Ehrenberg Photography Studios held a fundraiser in the first month that was tremendously successful. The pictures turned out great and several people helped run that event.
- Danica Buck and her family held a garage sale. Danica and her friends enthusiastically ran it and raised significant funds for the Hope For Hope Trust Fund.
- Hugh and Bonnie Hurley ran a refreshment stand at the soccer fields and were supported by the kind families of kids who were playing soccer that day.
- Several bake sales were held at baseball games.
- Several people manned tables selling Hope items at the Rodeo, the Fourth of July fireworks, the Strawberry Festival and the Elks club dinner
- Boyscout Pack 850 Troop helped with the garden clearing weeds and planting flowers.
- A blood drive was organized by Sharon Calqhoun and Karen Fortgang that credited Hope with much needed blood – she seems to go through several pints a month
- AnyColor Inc., in Ewing, for printing Hope’s Notecards.
- Aztec Graphics in Trenton for printing Hope’s T-shirts.
- Kathy Martin’s friends in Virginia for printing several professional signs at no cost to us.
- The Provident Bank has processed all the checks that come to them making photocopies of each check. But more importantly, they provide small town service and are always happy to see us and check on how Hope is doing.
- The Montgomery Middle School staff and teachers for truly caring for Hope. They have been so flexible and understanding with our mutual goal of still making education a top priority for Hope.
- The High School students held a fund raising flag football game under the leadership of Brock Mislan, Student Council Advisor. Brock told me that it was really the students who initiated and ran it. They held it on what must have been the hottest day of the year. I understand the faculty team won. We hope the students still had fun and we thank them for their caring.
- The librarians of Mary Jacobs Library in Rocky Hill. They have sent frequent guest entries, made lists of books they know Hope would enjoy and even attended out-of-town fundraisers for her. They have been faithful friends.
- Our hearts were touched by several children that ran lemonade stands to raise funds. There were also several children who emptied their piggy banks and donated them to Hope for Hope.
- Claire Solonick, Band Director of the Montgomery Middle School 6th Grade Band did a fund raiser based upon how much the students practiced – some students even donated so that they wouldn’t have to practice.
- The landscaping DiMeglio families have donated their services by taking care of our lawn this summer. This has helped us out tremendously and they have done a wonderful job:
- Joe's Landscaping & Maintenance Inc.
- Caliper Landscaping
- DiMeglio's Landscaping
- DiMeglio's Lawn Service
- Jamestown Road
- We have a neighbor, Karen, who was having a birthday that she referred to as a “significant” age. Rather than receive birthday presents from her party guests she asked them to support the Hope For Hope Trust. She raised quite a “significant” donation. Plus, she made sure to bring back gifts from her “trip of a lifetime”, scuba diving in the Galapagos Islands – Hope’s dream trip.
- Several children have done the same and asked birthday guests to support Hope For Hope Trust rather than bring gifts.
- Our close friends, Sharon & Jim, knowing that we would not have much time to clean around the house, have provided house cleaners every two weeks.
- In a true community fashion, meals are being provided three times per week from people from all over town including the Girl Scouts, Harlingen Reformed Church, Mothers of Multiples, the Municipal Alliance, Boy Scouts and many others. Special thanks to Karen Fortgang for being the coordinator of this big job. Through this, you are truly nurturing us.
- The Princeton Elks club held a fundraiser Hawaiian dinner. It was lots of fun and we met many great people.
- The Rotary Club has provided financial support and many great business contacts.
- TEL Business Supplies has provided supplies at a 10% discount.
- Montgomery High School Class of 2003 made a donation to Hope for Hope
- Several business have sold the Hope items:
- Dr. Mary DeCicco
- Creative Hands
- Harlingen Veterinary Clinic
- Belle Mead Hot Glass
- The Provident Bank
- Mattawang Golf Course
- Roberta Ehrenberg Photography
- Jazams Toy Store
- T.E.L. Business
- Montgomery Recreation Department
- The nurses next door at Montgomery Medical Associates have been great! They take care of our cats and rabbit when we’re at the hospital and generally are just great neighbors and friends.
- Dr. DeCicco, DMD for making sure we still take care of our family’s dental needs. She and her staff go out of their way to show they care.
- LaRue Sunoco and The Harlingen Veterinary Clinic have made significant donations to the Hope for Hope Trust.
- Several friends have taken care of Liam and Skyler for short periods when Gemma and I can’t. Sometimes it’s picking them up after school or taking them overnight.
- Hundreds of people have sent notes, emails, gifts, well wishes and prayers.
- Hundreds of monetary gifts have been made directly to the Hope for Hope Trust Fund
- Lou De Lauro, Montgomery resident and teacher in Dunellen, is the Advisor of the Dunellen Juggling Club. They held a juggling and talent show and raised funds. We were lucky enough to make it to that show and all the kids did a wonderful job. We were very impressed with their skill level and very touched by their caring for someone they did not even know.
- Mounds of rummage sale items were provided by dozens of people. Girl Scout Troop 60, many friends and our families worked before, during and after it to make it very successful.
- Portions of sales from several people selling Tupperware, Longerberger, Avon and Creative Memories were provided to the Hope Trust.

We sincerely thank all of the above people and business as well as the people and businesses that I know we must have missed. All of this support enables us to focus on supporting Hope and takes our minds off of other would-be worries. It is truly amazing what people have done – quite often from people we don’t know and many who are children.

One other thank you to our expanded community around the country as well as internationally. We can feel your love from places like Arizona, Arkansas, Colorado, Texas, Virginia, Delaware, Pennsylvania, New York, Wisconsin, Florida and North Carolina and as well as London, Norway and the Netherlands.

We ask that you patronize the businesses that have supported us. We have worked directly with most of them – they are all very professional and skilled and more importantly they represent the true meaning of community.

Please check the www.hopeforhope.com site for upcoming events. Harlingen Reformed Church will be hosting a series of 3 concerts, named “Songs for Hope” and a very large gala is in the planning stages for January, 2004.

We are so thankful and grateful for ALL of your help, but more so for the love you have shown Hope. Please know you are making a HUGE difference!

Sincerely,

The Bertelsen Family

Thursday, September 18, 2003 6:51 AM CDT

We went into NYC yesterday and talked with Dr. LaQuaglia. He will be doing the surgery to remove the mass in Hope's abdomen. The surgery will probably be mid to end October. Hope will first have her 5th round of chemo and her counts must return to normal.

It will be a difficult surgery and will most likely take all day – he may even have to do it in two pieces with a round of chemo in between. She will be in intensive care for several days, again on a ventilator and various other tubes. They won’t have a parent bed in intensive care, but there is a Ronald McDonald house close by that we’ll stay at.

We also saw Mama Mia, 7th row, center (thanks, Uncle Phil) – it was great. Afterwards, instead of a cab we took one of those bike rides where you sit in a buggy behind the bike. We rode down Broadway through Times Square over to Penn Station waving to people who waved to us – actually, they were waving down cabs.

Hope is now a teenager. Thanks for all your birthday greetings.

Sunday, September 14, 2003 4:42 PM CDT

Hope came home Friday night just in time for the Saturday rummage sale. The sale was a huge success. Although it rained all day, the turnout was great.

A special thanks to all including those that setup, cleaned up, worked at the sale, dropped off items and purchased items and some who did all. A special thanks to Connie for coordinating the event!

Hope looks great. They've taken her off her IV nutrition to see what happens. Doing the IV for extended periods can cause other problems - but if she loses weight, they'll put her back on.

We see the surgeon this Wednesday who may operate on Hope's primary tumor. We also hope to see Mama Mia as it will be Hope's 13th birthday.

Friday, September 12, 2003 9:35 AM CDT

Hope just got to try her acting skills for a hospital promo. She had a few lines in front of a green screen and she's going to read a few more shortly.

Gemma doesn't even know it yet, but Hope and I will be coming home later today (Gemma's home setting up for the rummage sale tomorrow). She got the OK, but we first need some blood and plateletts and to get some meds. See most of you tomorrow.

Tuesday, September 9, 2003 1:23 PM CDT

Hope is still in the hosital. Her ANC count did go up a little bit. Occasionally her temperature goes up, but it doesn't seem to stay up. Her spirits are good.

She started school with her hospital tutor. I'll be bringing in her electronic piano so that she can practice. She had a musician stop by the other day who played the guitar and sang like James Taylor.

The rummage sale is this weekend. I'll be trading places with Gemma on Thursday so that she can come home and prepare for it. We're hoping to get a pass for Hope for Saturday for several hours so that Hope can come to it. If she can, we'll probably come during the second half of the sale.

The sale is this Saturday from 8AM to 2PM at the Harlingen Reformed Church. Please bring any items for the sale to the church on Friday. Please bring items in good condition - no large furniture. We hope to see you there.

Friday, September 5, 2003 6:16 AM CDT

Hope and Gemma are still at the hospital. Her ANC count was zero on Tuesday, 10 on Wednesday and back to zero on Thursday. And she just developed a temperature. So much for a short stay.

Hope lost more of her hearing and will require a hearing aid full time. Unfortunately, this is a permanent impact. It is all so frustrating since the initial indications are that the primary tumor has not shrunk.

Tuesday, September 2, 2003 3:03 PM CDT

Hope's fever has gone down, but her ANC count has also stayed down so they won't release her. She has a scan tomorrow and we're hoping the primary tumor has shrunk. Up to now it hasn't. The chemo's taken its toll on her but it hasn't impacted that tumor yet.

See recent journals and pictures.

Sunday, August 31, 2003 2:46 PM CDT

Hope had a fever yesterday so I took her into the hospital. She got anti-biotics, Benedryl, Tylenol, red blood, platelets and saline.

Initial results are that she did not have an infection, but possibly a viral thing. Her ANC count (formula of blood counts that indicates the ability of her immune system to function) was at zero. This has happened before. She gets the painful shots to help her with this and then they'll want her body to create them on her own before they release her. This may take a few days or a few weeks.

If you didn't see it, I made an update on Friday and added new pictures.

Thursday, August 28, 2003 2:11 PM CDT

We just came home from a short vacation in New York. Our original intent was to see a surgeon who specializes in removing difficult tumors who is at Sloan. So we decided to turn it into a mini-vacation and stay a few days in NYC. Uncle Phil got us tickets to Hairspray. The seats were third row right in the center. Hope loved it and she got the CD.

We also spent a day at the Bronx Zoo, walked around Battery Park, did a horse and buggy ride, did a Circle Line Cruise past the Statue of Liberty, walked through Central Park, took subway, cab and bus rides, ate at Carmine’s and a Korean restaurant, bought hats and shirts in Times Square and saw a motorcyclist crash right in front of us on the West Side Highway. The only thing we didn’t do was see the surgeon as paperwork delays forced us to reschedule the appointment.

Hope is doing well. She’s handled the fourth round of chemo OK so far. It made her a bit nauseous, but she seems to be over that now. We stopped at a hospital to get blood work done and we’ll get the results of that today see if she’ll need a transfusion.

Hope is up to 75 pounds. That’s almost 50% more than she was when this all started.

SEE NY PICTURES!

Wednesday, August 20, 2003 2:03 PM CDT

Gemma and Hope are on their way home from the first day of this round of chemo. Hope is doing well and they plan on stopping at Franklin Mills (big shopping malls). Two more days for this round of chemo.

We are scheduled to meet with a Dr. in Manhattan next Wednesday. He specializes in removing difficult tumors including neuroblastoma. CHOPs had a very good surgeon for this, but he recently left to take a head spot in a hospital down south and we've heard great things about this other doctor so we're looking into in.

We've received an initial response from United Healthcare regarding the stem cell transplants that Hope will eventually need. While CHOP is in network for Hope's treatment, the stem cell transplants are not in network at CHOP. United wants us to use one of their six hospitals to remain in network - but none of those hospitals have nearly the expertise or experience that CHOP has. I expect a battle with United on this issue and they keep dragging their feet. It is very frustrating.

See a new picture of Hope.

Monday, August 18, 2003 11:27 AM CDT

Hope and Gemma went to the hospital this morning to start the fourth round of chemo. However, Hope's ANC count (ANC is a formula based on her different blood counts) was too low so they've rescheduled chemo for Wednesday.

Hope actually looks and feels great. Her cheeks are getting pudgy (in a good way, Hope) and her pants stay on her hips - she never had hips before. Her spirits are good and she continues to smile and laugh. She even asked me to throw the frisbee with her the other day which the boys and I were very happy to do.

Tuesday, August 12, 2003 9:18 AM CDT

Hope was supposed to start the next round of chemo yesterday, but her blood counts were down. A nurse came to our house this morning and took blood to check her counts. We'll know in a couple hours if she's ok to start chemo tomorrow. Otherwise, it will most likely start on Monday.

Saturday, August 9, 2003 9:21 AM CDT

The scans did not show any new stuff, but unfortunately the tumor in her abdomen has not shrunk. The doctors don't want to change the treatment plan yet as the next two rounds of chemo are supposed attack the tumor more aggressively. We're keeping our fingers crossed.

The next round of chemo starts on Monday. Luckily, it will be done on an outpatient basis so if everything goes OK, we won't be staying in the hospital.

Hope was recognized at a store in the Princeton Shopping Center from her picture in the newspaper. It was kind of fun, but we'd trade it in a second.

Below is old stuff, but I’m leaving for people who may not have seen it before:

For those of you in the area, see the Princeton Packet. THE ARTICLE IS ON LINE AT THE LINK BELOW. A color picture of Hope is on the cover along with a story on how the community has rallied around her. It’s a nice article although some minor facts are wrong.

If you don't know already, there is another Hope website. It is www.hopeforhope.com. No sign-on or password is required.

A Note To All The Kind People Who Have Given Us Gifts: We are extremely sorry for delays in getting thank you notes out to everyone. There have literally been hundreds and hundreds of gifts and we feel terrible that we haven't been able to reach out to each of you individually. When Hope is not feeling well, we tend to her and the boys. When she is feeling well, we try to keep her active. We will get notes out to everyone, but please accept this thank you in the short term. We are truly touched at the number of gifts that we have received and the kindness and well wishes of so many people.

Tuesday, August 5, 2003 7:46 AM CDT

Hope had a few more scans done last week – we’ll get the results shortly. They’ll indicate if the tumor has shrunk and to make sure that there are no new ones. Other than that, medically it’s been a quite week (knock on wood). Although, Hope still gets the burning shots each night and the nutrition through her lines at night. The nutrition has her up to her highest weight, 67 pounds.

The Elks held a fundraiser for her last night, a Hawaiian dinner. We met several very nice people, ate a good meal and got to wear loud shirts. Thank you, Elks. Otherwise, it’s been very quite with several people coming by to visit.

Below is old stuff, but I’m leaving for people who may not have seen it before:

For those of you in the area, see the Princeton Packet. THE ARTICLE IS ON LINE AT THE LINK BELOW. A color picture of Hope is on the cover along with a story on how the community has rallied around her. It’s a nice article although some minor facts are wrong.

If you don't know already, there is another Hope website. It is www.hopeforhope.com. No sign-on or password is required.

A Note To All The Kind People Who Have Given Us Gifts: We are extremely sorry for delays in getting thank you notes out to everyone. There have literally been hundreds and hundreds of gifts and we feel terrible that we haven't been able to reach out to each of you individually. When Hope is not feeling well, we tend to her and the boys. When she is feeling well, we try to keep her active. We will get notes out to everyone, but please accept this thank you in the short term. We are truly touched at the number of gifts that we have received and the kindness and well wishes of so many people.

Tuesday, August 5, 2003 7:46 AM CDT

Hope had a few more scans done last week – we’ll get the results shortly. They’ll indicate if the tumor has shrunk and to make sure that there are no new ones. Other than that, medically it’s been a quite week (knock on wood). Although, Hope still gets the burning shots each night and the nutrition through her lines at night. The nutrition has her up to her highest weight, 67 pounds.

The Elks held a fundraiser for her last night, a Hawaiian dinner. We met several very nice people, ate a good meal and got to wear loud shirts. Thank you, Elks. Otherwise, it’s been very quite with several people coming by to visit.

Below is old stuff, but I’m leaving for people who may not have seen it before:

For those of you in the area, see the Princeton Packet. THE ARTICLE IS ON LINE AT THE LINK BELOW. A color picture of Hope is on the cover along with a story on how the community has rallied around her. It’s a nice article although some minor facts are wrong.

If you don't know already, there is another Hope website. It is www.hopeforhope.com. No sign-on or password is required.

A Note To All The Kind People Who Have Given Us Gifts: We are extremely sorry for delays in getting thank you notes out to everyone. There have literally been hundreds and hundreds of gifts and we feel terrible that we haven't been able to reach out to each of you individually. When Hope is not feeling well, we tend to her and the boys. When she is feeling well, we try to keep her active. We will get notes out to everyone, but please accept this thank you in the short term. We are truly touched at the number of gifts that we have received and the kindness and well wishes of so many people.

Wednesday, July 30, 2003 12:13 AM CDT

I took Hope in yesterday for blood work. She got Platelets and Red Blood cells. She also got a special nuclear medicine that was delivered in a special lead lined container. Other than being a long day at the Hospital, it wasn't too bad. Gemma took Hope in today for a scan - that's what the nuclear medicine was for and they're now on their way home.

For those of you in the area, see the Princeton Packet. THE ARTICLE IS ON LINE AT THE LINK BELOW. A color picture of Hope is on the cover along with a story on how the community has rallied around her. It’s a nice article although some minor facts are wrong. And Hope now has a sandwich named after her at the Deli Expressions - grilled chicken, fresh mozzarella, basil, olive oil - mmm, mmm.

If you don't know already, there is another Hope website. It is www.hopeforhope.com. No sign-on or password is required.


A Note To All The Kind People Who Have Given Us Gifts: We are extremely sorry for delays in getting thank you notes out to everyone. There have literally been hundreds and hundreds of gifts and we feel terrible that we haven't been able to reach out to each of you individually. When Hope is not feeling well, we tend to her and the boys. When she is feeling well, we try to keep her active. We will get notes out to everyone, but please accept this thank you in the short term. We are truly touched at the number of gifts that we have received and the kindness and well wishes of so many people.

See some new pictures.

Friday, July 25, 2003 8:32 PM CDT

We've had several quiet days - those are good things. We visited friends, went to the Somerset Patriots game (Skyler even got to run out on the field to clean second base in between innings) courtesy of the Rolling Hills Girl Scouts, go to a Play in the Park in Pennington, etc.

We did have a clinic visit today, but it was a quick one as they did some blood tests and found her OK. She goes in next week to do more tests and for some more scans, but she shouldn't have to be admitted unless something comes up.

A Note To All The Kind People Who Have Given Us Gifts: We are extremely sorry for delays in getting thank you notes out to everyone. There have literally been hundreds and hundreds of gifts and we feel terrible that we haven't been able to reach out to each of you individually. When Hope is not feeling well, we tend to her and the boys. When she is feeling well, we try to keep her active. We will get notes out to everyone, but please accept this thank you in the short term. We are truly touched at the number of gifts that we have received and the kindness and well wishes of so many people.

See some new pictures.

Wednesday, July 23, 2003 8:02 AM CDT

Hope and Gemma came home last night. The chemo and the medicines to offset some of the side effects pulled Hope in several different directions. At times she was loopy or anxious. One time she was really mean, but it was the middle of the night and she doesn't remember it. This morning she is imitating the boys and actually ate pizza and mac and cheese for breakfast.

We'll be home for a couple of weeks assuming no infections pop up.

For those who asked, Teddy is now 10 weeks old. He gets along OK with the 5 cats who stay outside. One or two have swatted him, but the cats mostly back away from him.

Friday, July 18, 2003 11:14 AM CDT

Hope's blood pressure stabilized and they weaned her off the medicine. She was moved to Oncology last night and even had several hours without any IV's or hook-ups.

She is in the new Oncology wing. The rooms are gigantic and they all have Play Station 2's (which Liam and Sky will love). It also has a big Family Room and a teen room with a giant plasma TV.

Hope will start her chemo today and hopefully leave Tuesday or Wednesday.

Tuesday, July 15, 2003 2:16 PM CDT

Gemma took Hope to CHOP yesterday to start the next round of chemo. But first they had to take out the additional lines they had put in her chest to harvest the stem cells. This was supposed to be a simple 10-minute procedure. But when they took it out, Hope's blood pressure plummeted and things got a bit frantic and messy. She's in the Intensive Care Unit now and they stabilized her BP with some medicine. They had to insert an arterial line (in her wrist) that monitors her BP better than the cuff. Inserting this line is very unpleasant.

They also found another infection so she's also getting more anti-bodies. Unfortunately, with all the medicines she's getting they had to give her another IV line in her wrist.

With all of this, we hope to be out of ICU in the next day or so and down to Oncology to start the chemo. But they won't do that until her BP stabilizes without the medicine. Who'd of thought that we'd actually want to go to Oncology?

Friday, July 11, 2003 6:18 PM CDT

We have an addition to the family. Hope picked up an 8-week old Bichon-Poo puppy. He's part Bichon and part Poodle. See the pictures. We must be insane! But he is very cute.

We finished the stem cell collection on Wednesday and went back in on Thursday for a transfusion. We had off today and this weekend.

Hope is up to 65 pounds - this most she's ever been. She even has some pudge back in her cheeks, just like her daddy!

Wednesday, July 9, 2003 9:39 AM CDT

We're hopefully finishing up the collection of the stem cells right now (Wednesday mid-day). Because she needs 48 hours from after the shots she was taking to help harvest them before chemo can start, the chemo won't start until Monday. So we have a few days off. Hopefully, the weather will cooperate and we can do some fun things.

Saturday, July 5, 2003 5:19 PM CDT

Hope had a very active week. On Monday, I took her to the hospital to follow up on a minor infection that turned out to be nothing. This left us free for the week.

Tuesday was a trip to Rice's Market, a visit from friends and a trip to the Princeton Bagel and Korean restaurant. Wednesday was the Montgomery fireworks and Hope and Gemma greeted visitors to the Hope For Hope fundraising table. And a special thanks to Hugh Hurley for thanking the community for coming together to support us. Thursday, Hope, Gemma and Connie went to the Potter's Alley to do ceramic creations and went to see Finding Nemo. Friday was a July 4th picnic with close friends.

See the new pictures and the link below to the HopeForHope.com website!

Next week we'll get back to the medical treatments. Actually, it started yesterday. Since they only got about half the stem cells they wanted last week, they'll get more from Hope on Monday and Tuesday. To assist Hope to create the stem cells she must get shots which she started yesterday. Unfortunately, one of them burns when its injected. My job is to hold her hand as Gemma injects.

When they get enough stem cells, Hope will be admitted and they'll start the next round of chemo. This will be the third round of five and will last five days.

Sunday, June 29, 2003 7:23 PM CDT

We just got home for the shore. After the family picnic on Saturday, we decided to stay at the shore. We got great weather again and wheeled Hope out onto the beach in at wheelchair designed for the beach. It was made of PVC pipes and had big balloon wheels so Hope could be rolled on the sand and sit near the water.

We had an artist air brush a picture onto a white sweatshirt with Hope's name on it. The best part was watching as he created it. Hopefully we'll be at the Montgomery fireworks and people can see it.

Saturday, June 28, 2003 7:58 AM CDT

Hope should be home around noon today. And then we're off to a family picnic down near the shore. Hope's been doing well. We took her out shopping on Friday and she got some neat socks. On Friday we went to the Franklin Institute to catch the IMAX version of STOMP - good stuff, but it doesn't really take advantage of the whole IMAX effect.

The gift shop at the Franklin Institute was actually selling a blue glass ball with stars on it, just like Hope's.

Hope should be home this whole week. We'll be taking different day trips through the week. We'll definitely be at the fireworks on Wednesday night and will stop at the Hope For Hope table.

Everyone have a safe 4th.

Wednesday, June 25, 2003 8:03 AM CDT

Unfortunately, Hope must stay at the hospital - probably thru the weekend. She's got some soars that require a combination of anti-bodies and they want to keep an eye on her. Meanwhile, she continues the pharisis (gathering of the stem cells).

But she does get time off for good behavior and gets 4 - 6 hour passes to get up and about. I think she'll know Philly very well when this is all done. And she can get visitors if you're so inclined. Just send an email before hand so they know to expect you and can call you in case they have to cancel last minute.

Monday, June 23, 2003 8:31 PM CDT

Hope's still at the hospital, but doing well. Her counts are finally coming back and they'll probably go for the stem cells tomorrow.

Hope and Gem actually made a trip to the Philly Zoo today. The weather was good and they stayed out for four hours. I'm sure it wore them out and that they're both already asleep by now.

I stopped by the flag football fundraiser game today. All the kids and the faculty team were having a great time. The faculty team actually made it to the finals. Not sure who won the finals game, but my guess is on the team that gives the grades.

Sunday, June 22, 2003 1:20 PM CDT

Hope has a small infection - again from her own germs that her body couldn't fight off. Her "counts" are just starting to come back so she should be back on schedule soon. They will most likely start harvesting the stem cells on Tuesday or Wednesday. It's normally a 4 day process normally done as an out-patient, but we'll see if they'll keep her at the hospital. We're hoping to push the next round of chemo until after the July 4th weekend.

Hope's actually doing pretty well at the hospital. She only needs to be on the anti-bodies for an hour or so thru the IV then the IV comes off for an 6-8 hour break. She continues to get nutrition thru the IV, but that's done overnight.

Liam and Sky's boy scout den is doing some work in the back yard and Danica had her yard sale today. We stopped by the yard sale and it was huge. Thanks to the boy scout den and Danica and her family.

Hope did get the latest Harry Potter book so she'll be reading away at the hospital. I give her a week to finish it.

Wednesday, June 18, 2003 6:59 PM CDT

We had a good week. But Hope's temperature just went up so Gemma just brought her to the hospital. She'll most likely be there for a few days, 3 or 4. We've learned to enjoy the good days knowing harder days are always right around the corner.

To Hope's School Friends: if you get a chance, please see Zoe who has Hope's yearbook and sign it.

Sunday, June 15, 2003 5:30 AM CDT

The past several days have been good. Hope got home from the second round of chemo on Wednesday. She's been nibbling on several different foods but gets most her nutrition via the IV that runs overnight.

We even made it down to Seaside Heights yesterday and had a wonderful day. We pushed Hope around on a wheelchair and she enjoyed the smell, sights and some shopping and she bought a blue cowboy hat. I'll put a picture of it on here shortly. And, of course, the boys had a great time. Especially with Aunt Connie with us.

Hope goes to the hospital this week so that they can harvest the stem cells. She'll get tested on Monday, then Wednesday, then Friday until they determine that she is at the optimal window period to get them. If so, she'll then be there two to four days.

Happy Father's Day to all the dads. Dads (and Moms) truly are blessed people.

See the new pictures.

Thursday, June 12, 2003 4:22 PM CDT

Check out Hope's new hair and new cut (thanks, Sharon).

Wednesday, June 11, 2003 2:57 PM CDT

Hope and Gemma just came home from the second round of chemo. The chemo was a little tougher on Hope than the first round, but it was only for two days. She's a little tentative about food, but she is craving it. Hopefully tomorrow she'll be able to eat what she wants.

Hope looks good. The nutrition she gets via the IV has helped quite a bit. She actually has some meat on her bones. See the new picture of her.

Monday, June 9, 2003 5:41 AM CDT

Hope and Gemma head back to CHOP's this morning to start the second round of chemo. This is only a two day treatment and if all goes well they'll be home Wednesday or Thursday. They will avoid giving her the stuff that they think caused the reaction in her lungs.

Hope went to church yesterday morning and took it easy in the afternoon. Gemma, the boys and I stopped by the baseball fields to see the bake sale and then the Strawberry Festival to see the ornament sale. We are still amazed at the number of people that have become involved. Thank you all.

Saturday, June 7, 2003 6:15 PM CDT

Hope got her steak dinner on Friday - thanks to the Weinshenks! She also got her Korean food for lunch. And she made it to the rodeo that night and stopped by the booth selling the Hope blue star ornaments.

Today is bit less eventful - thanks to the rain. But she did make it a bowling birthday party and saw some of her friends.

Thursday, June 5, 2003 8:47 PM CDT

We’re home again! The furnace broke on Tuesday, but was fixed just in time to make hot water for us. We went to the end of year Girl Scout picnic and Hope got to see her GS friends – first time without hair. Hope and the girls handled it well.

The nurse is here now going over the medicines and IV. Gemma is now officially an RN and Hope is officially a walking medicine cabinet. But at least we can do these pieces at home. Back to the hospital on Monday for the next round.

Wednesday, June 4, 2003 10:31 AM CDT

Keep your fingers crossed. The doctors told Gemma and Hope that as of right now, they can go home tomorrow. Hope will be on IV nutrition and other stuff at home, hopefully only thru the night but possibly during the day.

Her infections have cleared up. For those who were concerned, the infections that she got were not from other people. Everyone has bacteria on them and in their bodies and they are taken care of by your immune system. However, when your immune system is compromised by chemo, you become more vulnerable to getting infections from those bacteria.

Just another reminder - no hugs. In addition to the stuff Hope has on her from the first time, she now has four wounds from the biopsy they just did. Also, please refrain from rubbing Hope's head. As you can imagine, the first 50 rubs are OK but the next 500 ....

Tuesday, June 3, 2003 4:23 PM CDT

They moved Hope out of Intensive Care on Monday afternoon and back to Oncology. She still has some infection in her lungs (which is why they did the biopsy) but we won't get the full details of what it is until later this week. Right after they moved her to an isolated room in Oncology, they ruled out TB but she got to stay in the isolated room for now.

They'll keep an eye on the infection in her lungs and also focus on her nutrition as they recognize that we need to make her strong to minimize the aftermath of the chemo. But she is bouncing back strong now as her white blood cells (the ones that fight infections) are now almost back to normal.

The hospital has been treating us well. Hope has a tutor that comes for an hour a day as well as an art therapist who also comes by for an hour a day. The nurses are fantastic - most of them are working on their graduate degrees and they know all the details of the treatments. The doctors are also great, but we're working with them on communicating with us a little better.

Monday, June 2, 2003 9:15 AM CDT

Things have gotten much better. They removed 4 tubes from Hope and she's reacting fine so we feel much better. She ate a buttered roll this morning and is her usual perky self. They'll be moving us out of Intensive Care and over to Oncology today. We hope to get her on a feet and moving around a little today.

As soon as she can she wants a big steak or a least a big hamburger -either way, I know I'll end up eating half of it.

Saturday, May 31, 2003 5:47 PM CDT

As of right now, Hope is doing well considering… she has had a persistent fever, she had an operation to get a biopsy of her lung and they put another port into her lung to drain it. Since the biopsy was of her lung, as a precaution they put her on a ventilator to breathe for her. And since they didn’t want anything in her stomach to come up, they drained her stomach. And they took x-rays several times to make sure all the tubes were in the right places – they brought a portable x-ray machine into the room, but have to slide the hard plates under her to take them.

It’s very hard to see her with all the tubes and see the machine breathing for her. She’s got so many tubes that they had to add arms to the IV stand to hold all the pumps.

But she is doing better. She’s alert and her pain is under control. They’re weaning her off of the ventilator so they’ll probably take that off later tonight – and hopefully take the stomach tube out at the same time.

With the ventilator, Hope can’t talk so she’s using sign language. Unfortunately, I don’t know sign language and Gemma is a bit rusty with it. But we know Hope’s feeling better because she’s back to correcting us when we make mistakes – that’s the fighter in her that’s going to get her through this.

This will be a long battle. Hope will not be going back to school for schooling this year – though will maybe make an occasional visit. Hopefully, the other cycles of chemo will not be this bad. But we suspect they will.

Friday, May 30, 2003 1:48 PM CDT

It’s been more tough days. We were moved out of Intensive Care back to Oncology but will most likely end up back in Intensive Care soon. Hope’s breathing has been rapid and there is some fluid and other stuff in her lungs that they’re not sure what it is. So they’ll be doing a biopsy on her later this afternoon and draining some of the fluid. She’ll most likely go to Intensive Care after the procedure to keep a close eye on her breathing and to keep her lungs draining.

We hit another milestone as Hope’s hair started to come out. We had a stylist come in to cut it but ended up taking it all off. I didn’t know she had ears. Gemma and Hope are working on a bandana type cover and hat.

Through all this, Hope actually seems strong. It’s amazing she can function so well with all the stuff going on inside her including all the anti-bodies they are pumping into her.

Hope has actually had tutor come work with her the last 3 days. It keeps her thinking and she gets very focused attention from her tutor. And she still does Art Therapy – a lady comes with a cart of supplies and sits with Hope for and hour helping her do art.

Wednesday, May 28, 2003 11:01 AM CDT

Kind of a tough night for Hope and Gemma. I stayed in another room in the hospital last night. The nurses come in several times during the night. They even realed in a portable x-ray machine to take a chest x-ray - her breathing rate is a bit rapid so they wanted to make sure it wasn't something in her lungs - there wasn't.

We'll be in intensive care for at least another day, then they'll move her back to Oncology. We now have to focus on getting her fattend up and a little stronger.

Not sure yet about visitors - definately not while she's in Intensive Care.:)

Tuesday, May 27, 2003 3:54 PM CDT

Hope's had a couple rough days. Her temperature has fluctuated and her blood counts are down as is her weight. We expected the blood counts to be down as that is part of what chemo does. As of right now, her temperature is normal but they'll keep a close eye on it over the next few days - we'll most likely be here for a few days. And the next chemo is due in a week or so.

We're in intensive care and somewhat isolated so as to keep Hope away from kids with other illnesses. But she'll probably get moved back to Oncology in the next day or so - hopefully not on the same side we had before near all the construction.

In intensive care, Hope and Gemma don't have as much access to the internet - they now would have to come up here to the library to do so. So they may not be able to respond quickly to your emails. I will occasionally be checking them so if you have anything you need me to look at right away, please put a note in the subject line directed to me.

Thanks to all. :)

Monday, May 26, 2003 2:49 PM CDT

Hope had a fever this morning so the hospital told us to bring her in. Any fever could be a sign of infection so they are very cautious. Our other concern is that she hasn't been able to eat so they'll give her some nutrition. They may be there for a few days.

This weather stinks. :)

Saturday, May 24, 2003 5:57 PM CDT

Hope must still go to the hospital on Fridays and Mondays in between chemo treatments. Next chemo is in a couple weeks. Right now at home, she must take medicines, get her IV flushed daily and get daily shots. The worst part, of course, is the shots. Actually, the needle (which Gemma administers) is not so bad (easy for me to say), but the medicine stings as it goes in. We pre-treat the spot with ice, but it still burns.

Yesterday at the hospital, Hope had a transfusion as her red blood cells were low. Transfusions are really much better than they used to be (much safer blood), but it still takes 2 to 3 hours to do. They did an ultrasound, but we don't know yet what it showed. However, we do know that the billierubens are down (which is good) and that means that they are flowing out now that they are not restricted.

Her Uncle Tim and Uncle Russell and their families made it to the house today for a visit that lifted Hope's spirits. But she seems to be a bit more tired today as her white blood cells, as expected, are now lower and her body (with the help of the shots) will generate new ones.

Sorry for all the medical talk. While Hope generally feels good, she has constant procedures and reminders of the struggle she has.

Thursday, May 22, 2003 4:58 PM CDT

Hope made it to school today. She was so happy to see her friends and they all greeted her warmly - without hugs. Unfortunately, the decorations on her locker had to be taken down before she got to see them. If anyone has a picture of it, please send a copy to us.

It was a relatively easy day at school since they had a band and chorus assembly. Hope stayed for a couple hours and then we brought her home.

Hope and Gemma are actually at their Girl Scout meeting right now so she's still feeling well, but a little tired. Our biggest challenge is getting her to eat.

I may not make daily updates for a while, but I'll certainly make them every few days.

Thanks to all that checked this site daily to check in to see how Hope is doing.

See the new picture of the whole 7th grade class who got together to take a picture for Hope to let them know that they were thinking of her.

Wednesday, May 21, 2003 7:20 PM CDT

Not much going on today. Mostly getting acclimated to being back home, taking medicines and trying to eat. Otherwise, just chilling.

We heard some people wore purple and blue today since they are Hope's favorite colors. We're still amazed at the number of people and the way that they've supported us. We also got a picture of the whole 7th grade who got together to send a get well to Hope.

But now we're struggling thru the two hours of American Idol.

Just another reminder because Hope will be seeing a lot of you shortly - please no hugs or germs.

Wednesday, May 21, 2003 7:30 AM CDT

WE'RE HOME!!! We're home until the next treatment in about 2 weeks. Hope's doing well and eating this morning. She hopes to get into school occasionally.

Reminder: She's had some surgery and has a weakened immune system. So no hugs and please keep a distance if you have a cold.

After 3 weeks at the hospital, we're so happy to be home!

Tuesday, May 20, 2003 9:21 AM CDT

We got word that we can leave the hospital soon - maybe even late today. Hope even wants to get to school on Thursday.

One small request - no hugs as she still has some soreness. Also, her immune system will be weak so please keep a distance if you have a cold or virus.

I hope we have enough room in the mini-van for all the gifts, cards, balloons, flowers, etc.

Monday, May 19, 2003 7:42 PM CDT

Another pretty good day. Hope was up and around and not feeling too sick and eating a little bit. Looks like we may even go home this Wednesday! Then back in 2-3 weeks for the next round.

Sorry - no more news, which is usually good news.

Sunday, May 18, 2003 5:50 PM CDT

Hope had a good day. The medicines were effective at offsetting the nausea and she was able to move around today with Gemma, Connie, Sharon and Alex while I had a day with the boys and their friend David.

Hope received several more gifts today. I know it's a little tacky, but it would be impossible right now to send individual thank you notes to everyone who's sent a gift or provided support. But know that we are very thankful for each of them at a time when it’s hard to be thankful for anything.

I replaced the third picture on this site. It is a painting Hope did while at the hospital. The actual painting is bigger than my scanner so some of it is cut-off but at the same time you'll see the picture is much bigger than the other ones - I still can't figure computers out.

Saturday, May 17, 2003 3:48 PM CDT

The effects of the chemo caught up to Hope today. She was a bit nauseous and achy. They gave her some different medicines to offset it and she has been somewhat tired out from them.

It’s another dreary weather day in Philly. Seems like the sun has only poked its head out a few times since we've been here - now for two weeks.

Best case scenario we go home Tuesday. But a lot depends on Hope’s ability to stomach food. Right now all her nutrition is thru her IV line so she probably wouldn't go home until she can stomach enough food to get enough nutrition.

Thanks to all who flood our room with letters and gifts. I recommend not sending anything more to the hospital, as hopefully we'll be home in a couple days.

Not sure when Hope will be up for visitors but when she can we'll be certain to update this site.

Friday, May 16, 2003 10:21 AM CDT

The chemo yesterday evening was somewhat uneventful. We like that around here. It did cause some tingling and some minor pain and uneasiness to her legs and one arm, but there was very little nausea. We do know that it sometimes takes a couple of days for that to get worse but they have medicines these days to try to offset the nausea.

We had visions of chemo being a glowing colored liquid that would require special equipment in a special room. But it is just another clear liquid hooked up to Ivy (Hope's name for the IV pole that follows her around) that she gets in her room.

Hope wrote down some more ideas several days ago:

HOPE is for...
the Happiness it brings everyone who has it,
the Optimism that points us in the right direction,
the Peacefulness that washes over you when you have it,
and the Enthusiasm to keep going through it all.

Thursday, May 15, 2003 11:46 AM CDT

In a few minutes, we'll be taking Hope outside for a stroll. The weather seems to be nice (can't tell since our window only gives us a view of some internal construction - a whole other story). But we have a two hour pass and will bring her around the university and the many art halls and get her something good to eat.

Hope wrote down some thoughts after she came out of the first biopsy that she said is ok to share:

words... cave in....
dig out...
big emotions... feelings...
thoughts... ideas...
small wounders... miracles...
amazements... gems...
a buzz... a whirl... a hum...
crashing... smashing... colliding...
forming... your world

Hope then took this and in art therapy, cut out letters from magazines and pasted it onto purple paper.

When we come back, the chemo will be waiting for her.

Wednesday, May 14, 2003 7:09 PM CDT

We did not start the chemo today - we'll most likely start it tomorrow. The harvesting of the T-cells took 4 1/2 hours and then she had another scan. We reviewed the treatment "road map" and went into some of its details. We'll mull them over tonight and do some final research and probably start tomorrow. So overall, we had a quiet day.

This seems like the calm before the storm as we know that the chemo will not be pleasant.

Hope received several special gifts today from friends. Thank you all very much. The personal touches on them are very heartwarming.

Hope is calling me as I'm to take her to the library.

I'm finishing this from the family library. This hospital is great in providing resources for the family. As most of you know, Gemma stays in the room with Hope and the hospital provides a chair that converts to a bed. I've also stayed over most of the nights and we have a fold up mattress that we brought from home.

Tuesday, May 13, 2003 6:43 PM CDT

Hope had a quiet day today (so did mom). They delayed the procedure to get the T-cells until tomorrow. It's not an intrusive procedure, but does take three hours of sitting around.

Mom got a class on caring on some homecare and Hope did some art therapy.

To those sending pictures via email - It is very much appreciated, but it seems that Yahoo only allots so much space and the pictures we get in emails kinda clogs up that space and then we can't get other emails. I've ordered more space so you can send some but not too many. Try to make them low resolution jpg's (if you don't know what that is, ask your kids) and understand that we won't be able to keep them long.

This site allows me to display 3 pictures. If you have some that would be good for this site, please send them to JohnBertelsen@yahoo.com.

Our thanks again to all that visit this site. This means a lot to Hope, especially the guest book entries. Hope wants to respond to each as well as to the emails but sometimes it takes her several days to respond - but keep them coming.

My editor (also known as my wife) has pointed out several typo's and misspellings (did I spell that right?). Please forgive me for those - this does not have spelling and grammer check and I'm lost without it.

Tuesday, May 13, 2003 9:35 AM CDT

SEE PICTURES in the photo album!

Yesterday, Hope had a rough day. She started with a procedure under general anesthesia to put in a special IV so that they could get the stem cells today. She came out of anesthesia quite groggy. And although she was only slightly able to acknowledge her friend Alex and Alex’s mom Sharon who had visited, she did have enough energy to “correct” Gemma on something Gemma said to Sharon. Thanks Sharon for your sauce that Gemma loves.

Hope also had to experience some other unpleasant stuff, but towards the end of the day she was much more energetic by the time one of her close friends, Zoe, and her parents visited around dinner time.

We sat with the doctors today and went over Hope’s treatment plan. She’ll start the chemo on Wednesday and it should go for five days. When she’s feeling better, she can go home. Thereafter, every 3 weeks she’ll get the chemo again. This will go on probably for a total of 5 or 6 treatments. In between the treatments, she’ll be closely monitored and she’ll get blood transfusions as needed. We’ll also keep a very close watch on her temperature as a sign of any infections. Depending on how Hope feels, she can carry on a normal life while she’s getting treatments. After the first treatment, she’ll be doing the other treatments as an outpatient.

After the chemo shrinks the tumor and kills off the cancer cells, they’ll go in and remove what’s left of the tumor. They’ll then do radiation. After that, they give her back her stem cells twice that they harvested during the treatments. And then they’ll give her back some T-cells that they’re actually taking from her as I write this. We’ll be going over more details with the doctors over the next few days since they didn’t want to overload us with the details during this first meeting of the treatment plan.

Last night, Kathy Martin held a meeting to help coordinate all the folks who wanted to help during these tough times. The outpouring of people who wanted help has been overwhelming and Kathy has been great in getting people involved. If you’d like, you can contact Kathy at kpmtwins@aol.com. Kathy is working on many different projects and your support in working with Kathy is very much appreciated.

In closing, at the meeting I read a short note from Hope: “Thanks for all the kindness, prayers, cards and emails I’ve been receiving. Knowing that so many people care and take the time to think of me has really helped get me through all this. Love Hope.”

Sunday, May 11, 2003 8:19 PM CDT

Hope had many visitors today. Her pain level is way down, but she gets some work done tomorrow and Tuesday to get her ready for the chemo. Part of the work is to harvest some stem cells.

The Church made a video of the children's service that Liam and Skyler were part of. Also, all the kids said hello to Hope and wished her well. We just viewed the video in the hospital room.

Hope and Gemma got to see the video of Liam and Sky's school chorus play - cute stuff that we'll threaten to show when they get older.

If anyone has any pictures they can email to us that we can post to this site, please send them to hopebertelsen@yahoo.com and I'll add them.

Saturday, May 10, 2003 9:35 PM CDT

The boys and I just got back from spending the afternoon with Hope and Gemma. I was able to spend the weekend with the boys and they were very happy to see their sister and mom.

Hope was moving around much better today but is still tender. They're fattening her up with nutrients and fats. Some other medications occasionally make her a little sleepy.

There were several visitors today. Thanks for the gifts but mosty thanks for showing Hope how much you care.

Hope will be good for any visitors tomorrow (Sunday). If you are going, please check this site before you leave.

Saturday, May 10, 2003 8:06 AM CDT

Hope is good for visitors today. Note that while you're there, nurses or doctors may stop in so you may need to step out for a minute or two. There's a family room just across the hall so you won't feel in the way.

Visiting hours are from 9AM to 8:30PM.

Note that I made an entry late last night so if you'd like to see you'll have to click on "Look at past journal entries" below.

Friday, May 9, 2003 8:48 PM CDT

Hope had a good day today. She still had some pain but its better than the last couple of days and she was able to move around.

She had several visitors today. Her room is crammed with goodies from everyone. She also spent several hours on a painting - she has great patience with her arts and crafts. You should see the painstaking bead work she does.

The boys had their "going buggy" show at the school and I got some good video of them which I'm sure will put big smiles on Hope and Gemma.

One request: we know people want to help. You should know that we're very, very confident with this hospital and the doctors here. They lead the medical world in treating this and they are on the leading edge of new treatments. There is no need to send us links to other sites or to offer medical advice from a relative - quite honestly, we can't process it all. We know people do it because they care and we are sincerely grateful for all the support.

The number of visitors to this site boggles our minds. It is a tremendous boost to us knowing that so many people care. We've had so many hits on the site that I think Hope is now in the finals with Clay on American Idol :)

Friday, May 9, 2003 9:05 AM CDT

Hope still has some pain so they are going to take some x-rays to take a look.

My sister found a site from a mother of child with cancer who has many good suggestions on how to support a family going through the same thing:

http://www.acor.org/ped-onc/cfissues/dodont.html


Thanks to all for leaving such nice messages to Hope and us on this site. Please restrain from putting any bad news stories on it as this is not a good place for that. My heart goes out to those that may have been in our situation and if it turned out well, please tell us about it. If not, I know it must be devasting but please not on this site.

Again, thank you!

Thursday, May 8, 2003 7:06 PM CDT

Sorry I'm a bit late. I'm at home with the boys and Connie and Gemma's at the hospital with Hope. The boys had a cub scout function and they have a school play tomorrow so I came down for a few days to try to keep some normalcy in our lives. Just had some of the turkey lasagna and salad from Ann Violette - very good, thank you. Now I'm going to sample the strawberry pie.

Hope is still struggling with some pain, but the good news is that the jaundice cleared up a little so she won't need the procedure tomorrow morning to release it. This weekend would be good for anyone who can visit. I'll put a note out here on Saturday and Sunday mornings in case she's not up for visitors and the best times to visit.

Hope had a bunch of tests today just to get a baseline for when she starts treatments. None of them were intrusize: eye exam, EKG, etc.

Not much else to report today. Also, not much going on this weekend. We'll review the treatment plan with the doctors on Monday.

Hope's Aunt Aline from Arizona and Uncle Phil from NY visited today after I left. I'm sure they helped lift Hope's spirits.

Again, thanks to everyone. I know if I tried to thank everyone individually I'd miss some people. All your support is very much appreciated - especially your support to Connie, Gemma's sister as she takes care of the boys.

Give your kids an extra hug tonight.

Wednesday, May 7, 2003 6:15 PM CDT

Hope's pain is under control. The opening for the biopsy needed to be bigger since they were going to drain the bilirubins which, unfortunately, they were unable to do. This larger incision caused her more pain. They will go back in on Friday morning and drain it differently than they had planned the first time.

Other news - the bone marrow biopsy showed no problems in there. Also, they did a bone scan this afternoon and there were no problems on any bones which would have been much harder to cut out.

The doctors have diagnosed the type of cancer. It's called neuroblastoma. Neuro refers to the fact that it comes from the nerve cells - it has nothing to do with the brain. When it hits kids, it normally hits younger kids. Unfortunately, its more of a problem with older kids and normally requires very aggressive treatment for them. The good news is that this hospital is the leader in neuroblastoma in kids. Most other cancer treatment centers collaborate with them when they get kids with it. We have a lot of confidence that this is the best place for Hope.

There is no research to suggest that this was caused environmentally. Nor is there any additional risk our boys will get it.

For those so inclined, I'm sure some will research this on the internet. You'll probably find several articles referencing work done here. You'll probably find other articles with prognosis, but we still have some more tests to review to come up with one and don't want to get our hopes too high or low based on internet articles. CHOP's is the leader in this including stem cell work that Hope will most likely need to offset the effects of chemo.

There is another scan that will be performed but it will not alter the treatment. Chemo wll most likely start next week. We'll be discussing with the doctors over the next few days what the exact treatment will be and what we can expect. We know we are in for a battle.

We ask why and know that there are no answers. We ask why Hope and know there is no logical reason - it's clear its not based on merit because Hope's too good a kid. We've cried and gotten mad even though we know it will not help - and it certainly doesn't make us feel better.

If only, if only .....

Wednesday, May 7, 2003 5:27 AM CDT

This entry is for Tuesday May 6, 2003:

The vitamin K worked and Hope's blood coagulated well so she went in for the biopsy around 1:00PM today. The mass has been confirmed to be a tumor, but exactly which type is still to be determined.

They also extracted some bone marrow to see what it may contain and they installed a "port" for future use to extract blood for testing, nutritional supplements as needed and eventually for chemo.

There were also discussions about removing her gall bladder, but the mass made it too difficult to do now. It also restricted their ability to drain out the "billy rubens"(sp?) which won't hurt her but won't clear her jaundice.

Hope came out of surgery around 4:30 and is currently (5:00PM) in recovery with Gemma. Hope's been VERY brave through all of this - more so than her mom and dad. For those who don't know, today's my birthday so we were hoping for good news. My birthday wish is to give Hope all my birthdays. When Hope was a child I kidded with her that I didn't want her to grow up so that she could stay my little girl forever. Now I want nothing more than for her to grow up and fast.

Hope came back to the room around 5:10. She was in a lot of pain. They gave her pain killers and an IV where she could push a button to control the amount. The machine ensures that she doesn’t get too much but it also tracks how many times she pushes it to see if she needs a stronger dose. She has a rough night along with Gemma.

The oncologist talked to us around 7PM while Hope rested. The mass is a tumor and initial indications are that it is cancer. The prognosis and treatment plan will still take a few more days. They’ll do tests on it the next few days to give it a name. They’ll also analyze it to see how aggressive it is and they’ll have to do a couple of full body scans to see where else it may (or may not) be. They’ll do the scans over the next couple of days, but one may have to wait on one of them because the scans are done on Wednesday and Thursday and they need time to make the radioactive (very low dose) mixture.

As if that’s not enough, Hope will have to go through another minor procedure to release the billy rubens – that may happen today or tomorrow. They’ll insert a tube into her liver using real-time x-rays to guide them to the exact spot.

Please hold off calling the room as Hope may be resting. Also, Hope can have visitors, but please send an email to coordinate and understand that we may have to re-schedule it at the last minute.

Thanks to everyone for your continued support. The support continues to be tremendous and we can feel all your thoughts, prayers and caring. We apologize if we can’t return your calls or respond to emails quickly. Hopefully this sight will give us the ability to give some updates to all those who are so concerned for Hope and our family.

In short, they still have to analyze the biopsy to determine what it is and how aggressive it is and scan to see where else it may be. At that point they'll come up with a prognosis specific treatment plan - at which point we'll have a lot more questions we'll discuss with the doctors.

Monday, May 5, 2003 4:36 PM CDT

Today's biopsy has been delayed. There is a problem with her blood coagulation so she'll receive some vitamin K and they'll re-test the blood tomorrow. If OK, they'll do it tomorrow afternoon.

The biopsy will take a couple of days to analyze so we'll know more at the end of the week. At that point, we will determine a treatment plan.

Hope is doing well. She is not in pain and her spirits are good. Recent emails and visits from Family and Friends has shown her all the support that she has. Our thanks to everyone!

You can send emails directly to Hope at HopeBertelsen@yahoo.com. You can email to the Bertelsen Family at Bertelsens@yahoo.com. Note that we may not be able to respond quickly.

Come back her for updates which we'll try to make every day.

Click here to go back to the main page.

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