History

Tuesday, May 8, 2007 10:56 PM CDT

Hello everyone,

You'll be glad to know that we did not fall off the face of the earth (lol). This is a hectic and crazy time of year for our family. Thank you all for continuing to check in...I am always amazed by the kindness and caring of those who follow our page.

So much has happened over the past month and a half, I don't even really know where to start. When I last updated, we had participated in a big fundraiser for St. Baldrick's. I am so happy to say that the donations for this cause have continued to come forth. Due to the generosity of so many people, St. Baldrick's has raised a great deal of money that will be directly applied to research to find a *cure*. Like all of you, I just can't bear any more losses. Since my last post, two more classmates of Molly's from The Morgan Center died. Sweet Sophia and our dear Kendall both lost their battles with childhood cancer and to say that we are heartbroken is the understatement of the century. As are all of the children battling this disease, Sophia and Kendall were truly courageous, beautiful children. Children who suffered in their short lives way more than anyone should have to suffer, ever. Please keep their families in your thoughts and prayers. Finding a way to survive after suffering the loss of a child is a constant task, an unimaginable one to many. I myself can only imagine what it must be like. Even having the personal experience of losing my spouse and the father to my children, I cannot truly *know* how hard this must be.

On March 29th, 2007 it was two years since Roly was killed. Two years...it seems impossible. I still can't fully wrap my mind around the reality that I will not see him again...ever...in this life. That notion is so deeply painful...for me, for my kids, for Roly's family, for all who knew him and loved him. It just doesn't make any sense. Time does not heal the wound but what it does do is make you more adept and skilled at living *with* the pain. I would have to say that after two years, the kids and I are truly doing better in terms of living *with* the loss. We still talk about Roly each and every day. That will never change. We still cry because we miss him and want so much to just be with him. We think of things he did, tell stories of his great love for us all and we remember him with smiles and laughter because that is what he gave to us...smiles...big ones, so very often.

Since I last updated, we took a trip to Florida to spend the spring recess and Easter with our family. We stayed with Roly's parents, which for me was a blessing. Roly's mom really gave me a much needed break...she let me sleep in while she kept the kids busy in the mornings. She is an *amazing* grandmother. Billy and Molly are so lucky to have her. She plays with them constantly, takes them to do all kinds of things they like to do, cooks their favorite foods (including Matzo ball soup for Miss Molly), watches silly cartoons with them, swims with them, etc. She even hosted a get-together so that one of Roly's dearest childhood friends, Christine and her family, could visit with us all. Here are some pictures of our visit together:

The Johnsons and the Guartons by the pool.

We had a great time with the Johnsons...playing, swimming and dying Easter Eggs. We also learned a really cool, "tie dye" technique for coloring our eggs!

Hard at work dying Easter Eggs.

The finished product!

I don't mean to neglect Roly's dad here...Rolando was his sweet, charming self who is always great to be around. He and Billy watched some sports and played dominoes, a favorite activity when we are all together. It's just that Roly's mom goes so "above and beyond", well, we can't really thank her enough. Some highlights from our trip down south included spending time with Roly's sister and her family, seeing our Aunt Judy, going to the beach, seeing the show, "Spelling Bee", shopping in some of our favorite stores, *two* trips to "Build a Bear" and spending a whole day with my brother, George and my sister-in-law, Crystal. I think the highlight of the trip for Billy was spending time with his cousins and *finally* learning to ride a two-wheeler, thanks to Bryan and Sean! Billy was soooooooooooooooooooo very happy about this, as this was something he was trying to do for quite some time. Well, it took two kids to teach him but they did it and he hasn't stopped riding since! Way to go Billy!

Here are a few more pictures from our trip to Florida that I thought you all might like to see:

Molly and Grandma the night we went to see the show, "Spelling Bee."

This is my sister-in-law, Crystal and brother, George with the kids.

Here's Miss Molly at one of her favorite spots...Build-A-Bear! Thanks to Uncle George and Aunt Crystal for the adorable lamb!

Billy on the day he learned to ride a two-wheeler.

This picture was taken on Easter Sunday in the lobby of Nora and Rolando's church.

Here's Roly's sister, Vicky with all of the kids.

When we got home from Florida, it was back to school and work. The spring is a very, very busy time of year for me at my job. As most of you know, I am a psychologist and work full-time, splitting my days between two wonderful elementary schools. I have a lot of responsibilities at my job which include chairing the "Annual Review" meetings for each student receiving special education services in my schools. At these meetings, the progress of each child is reviewed and a new "IEP" or "Individual Education Plan" for each student for the following school year is written. This is a very time consuming task and it gets added on to an already full schedule so there have been many days that I have either stayed late at work or brought work home with me. I have begun to realize that although I was able to swing working full-time and doing a part-time private practice in the past, now it's getting more and more difficult to juggle both. In the past, if I was seeing clients in my office, the kids were with their dad...that involved no guilt. Billy and Molly were happy to be with Roly and he was just as happy to be with them. Now however, when I am seeing patients after school hours, I have to have my parents come to stay with the kids or our nanny sits with them. It's not that either option is bad...in fact, there are many, many times that I think the kids like being with my parents way more than they like being with me! It's hard to explain but by having my parents stay with the kids so much, I'm kind of thrusting them more into the role of surrogate parents as opposed to grandparents and in doing so, I feel like I'm robbing both the kids and my parents of what *should be* a normal grandparent-grandchild relationship. If I'm working in the office, then my parents are feeding the kids dinner, running them to activities, checking (and at times, battling about) homework, bathing and showering the kids, getting them set for bed, etc. It's not that my parents mind it in the least bit...in fact they are so great and *never* complain about helping out but I feel badly about it and I feel like the older the kids get, the more *I'm* missing out if I'm not around after school and into the evening. I don't know if this makes sense to any of you but I just know that I need to reevaluate working both jobs and somehow find a way to balance things so I'm more available to the kids after school and not working so much. As much as I would like to be really good at everything I do, there is nothing more important to me than being a good mom so I'm in the process of figuring out how I can do that best.

Back to what's been going on over the past month. In the middle of April, it was my birthday. I turned 29...again. Like I tell my kids, when you get to 29, you have a choice. You can stay there, not pass "Go" and not collect $200.00 or you can keep going. I've opted to just stay put at 29. So in honor of my 29th birthday, two of my girlfriends and I went away overnight to a spa in CT. It was really, really, really nice. It was the first time I left the kids for an overnight trip but everyone did just fine. Billy and Molly were with my parents and Chelsea while my friends and I were enjoying all of the spa amenities. It was a *really nice* way to spend a birthday.

The kids, Buddy and me on my birthday.

Here's the very tasty (as in I ate the whole thing!) cake Molly made for me with Chelsea! I loved it!

Back to what's been going on with the kids. Some activities have been winding down while others are just getting going. Both kids bowl on a league and that has just finished for the school year. But...baseball has started and so far, so good! Billy's team is undefeated to date and I have to say, his coaches seem really nice and have been working hard with all of the boys not only to win but to be the best they can be at the sport. Billy had a fabulous game last week and he was awarded the game ball. His team was winning 1-0. His team was in the field. The other team had one out, bases loaded. A kid hits a hard line drive right at Billy. He catches the ball and immediately turns the double play, throwing the runner out at second base to end the inning without the other team scoring any runs! Billy's team eventually went on to win that game, with a score of 1-0 so his great play really counted! It was a great boost for his esteem and confidence. Now, if only those Yankees could get some pitchers off the DL and start winning some games! Billy and I have tickets to go to a game in June so we're looking forward to that. Hopefully by then, the Yanks will pull out of last place! As for Miss Molly, her dance recital is coming soon at the end of the month. She has been practicing hard! She just took her dance pictures and she looked too cute in her lilac tutu and adorable body suit! I can't wait to see her perform.

Another big event took place since the last update for Molly...she turned 6! I cannot believe that my baby is 6 years old! How did that happen? She had the perfect birthday party...one right up her alley at a place known as "The Little Ladies Club." She was invited to a party there last year and fell *in love* with the place. She had been talking about having her party there ever since so that's where it was. The place is beyond adorable...every little "princess'" dream come true. Each guest had their hair done so beautifully and then make-up put on, if they wanted (Of course, Molly was one of the kids who had to have make-up!) Then, all of the girls had manicures *and* pedicures. There were tons of BEAUTIFUL dress up clothes and lots of dancing to the sound track from "High School Musical." Of course, the Hokey Pokey was done, along with the Limbo and Chicken Dance. After all, what party could be complete without those dances? There was a "tea party", with pizza and cake and just lots and lots of "girly" fun. Molly told me it was her best birthday ever, so it was all worth it. Billy wouldn't put his foot near the place so my brother took him and my "tom-boy" niece Katie to the skate board park, where they had a great time themselves. Then the whole family came back to the house to open gifts and eat some more! (Did any of you ever see my Big Fat Greek Wedding? Well, that's the kind of family I have...LOL). Molly received so many nice things...she couldn't have been happier. One thing that was special was that Molly had her party on Roly's actual birthday. Molly's birthday is 4/30 and Roly's is 4/29. Since the 29th was a Sunday, Molly wanted to have her party that day. She thought is was great because in this way, she could kind of share her party with her dad. That part of the day was very, very bitter sweet because as wonderful as the party was, Roly should have been here celebrating along side his daughter. Here are a couple of pictures from Molly's birthday. I haven't uploaded them all to the computer yet so next time I post, I'll do my best to add a few more.

Here's Molly getting all "dolled up" at the "Little Ladies Club"...she looked just too cute!

In full Princess garb...She had so many layers of dress up clothes on, I don't know how Molly even managed to walk around!

Here's Molly with her good friends, Morgan and Annie.

Molly and her castle Princess Cake...which also happened to be delicious!

As for the medical news, Molly has an appointment at the clinic next week. This will be our first visit on an "every other month" schedule and we are so happy about that. Molly has been doing well overall. I believe she caught "Fifths Disease" and it flared up while we were in Florida but she's fully recovered from that now. It was going around her class and she had all of the classic symptoms. She's also had a number of sinus infections and a recent bout with strep throat, which is more evidence that she will probably need to get those adenoids out. We'll see what the oncologist has to say at our next visit.

Oh, one more bit of good news...Billy auditioned for the school band and he was selected to be in it! He's following in Roly's footsteps and is playing the drums. He reminds me of Roly in so many ways...I know Roly must be smiling down on him with this recent accomplishment. Billy told me the other day that he had a very vivid dream that Roly came down from heaven to spend time with him. He said Roly saw him make that double play and was with him on a number of different occasions. Billy was really comforted by that dream...How I wish I could turn that into a reality for him.

Well, I guess that is all of the news for now...As always, we thank you so very much for continuing to check on us.

With love,
Donna

Wednesday, March 21, 2007 11:27 PM CDT

Hello everyone!

Happy belated St. Patty�s Day to you all! Let me begin this update by THANKING ALL OF YOU who made a donation to our St. Baldrick's fundraising team, Molly�s Baldwin Heroes. We all appreciate your generosity *so very much*. One day, I know there will be a CURE for childhood cancers. I cannot wait for that day to come�too many kids are still battling for their lives each and every day.

This update is going to be mostly pictures�I thought you would all enjoy seeing some of what went on last week. On Friday, Molly and I went in to NYC with our friends from my job in Baldwin. We were invited to participate in a really amazing St. Baldrick'sevent that took place on the set of the Mike and Juliet Morning Show. This show airs on many FOX stations throughout the country.

Well, when we got up at 4:45 am, it was freezing cold and snowing. Actually, it was snowing and raining freezing rain. Let�s just say the weather was less than perfect for an event that was going to be shot *outside*. Molly and I met our friends at 5:45 am and we all drove to the train station where we caught at 6:13 train into Penn Station. We found a great parking spot�but later, I found out it via the ticket on my windshield that it was a great spot because it was only for people with special permits to park there�sigh. Oh well, you live and learn. Anyway, we were all so excited to participate in the event. We caught cabs down to the studio and we were treated so nicely by everyone from St. Baldrick�s and FOX. In fact, they treated Molly like a true princess! She had her hair done, make-up applied and even had a manicure and her nails painted green all before 9:00 am! She really felt special! Despite the fact that the weather was awful, they tried to make us comfortable and really created quite the party atmosphere for the shaving that was to take place. Lots of other people were there for this event�including Enda McDonnell, one of the founders of the St. Baldrick's organization. Enda was interviewed along with a lovely young lady, Sarah who shaved her head in honor of her sister who passed away from cancer. Though the truly WONDERFUL guys from my school district who shaved their heads didn�t actually get too much TV time, they still had a great deal of fun. They stood outside in the cold for hours and didn�t complain. In fact, they were happy to be there for such an amazing cause.

To Jim, Brian, Larry, Chris, Jimmy, and Brian�Molly and I can�t thank you enough for helping to raise awareness and funds to put an end to childhood cancer. You are all incredible people�people to be admired�and if I do say so myself, you all look pretty darn good without hair! Especially Larry�who Miss Molly developed quite the �crush� on! In fact, at one point when I told her to please leave Larry alone for a few minutes, Molly responded��Oh Mommy, don�t you understand? I�m just very *attracted* to him!� OMG! I am in BIG trouble�she�s only 5! What is she going to be saying when she�s 15???? For my praying friends out there, pray harder! I�m going to need it!

Well, here are a bunch of pictures! I hope you enjoy them!

Every girl just has to have her make-up done by a professional before appearing on TV!

Molly and me

Here is Molly and Enda McDonnell, one of the founders of St. Baldrick�s. This is the *before the shave* picture!

Here they are after!

Brian just about to get �buzzed�!

Chris looks pretty happy about getting his hair shaved off!

Do you think Molly is having a good time with Brian? What a face!

Here�s Jimmy getting ready to say good-bye to his hair!

Molly and her new �crush��Larry!

Jim seems to like his new look!

Juliet and Mike from the Fox Morning Show�they were so nice to Molly and everyone from St. Baldrick�s.

After a freezing cold, snowy day in NYC, we are all warm back at Brookside School!

Well, that's it for now but there's more to come in the near future! Thank you all for continuing to check in on us and for leaving us such kind messages of support and love. It means so much to know that so many care.

With love,
Donna

Tuesday, March 6, 2007 10:10 PM CST

Hello everyone,

Where to begin? It's been a very busy month with lots of ups and some downs too. I guess I'll start off by telling you that we never made it to Florida in February. Our tickets were booked with JetBlue and due to the bad weather that hit the northeast right around the time we were supposed to fly out, lots of flights were canceled and delayed. I decided that it wasn't worth the chance that we wouldn't get off so I rescheduled our tickets for April. I was so exhausted from work that I just wasn't up for waiting around in the airport for hours upon hours with two anxious kids. Though the kids were *very* disappointed in the change of plans, the blow was softened by the fact that my Roly's mom was able to come and stay by us for almost a week. Thank God for Grandma Nora...she really came to the rescue. The kids had lots of fun with her and as it turns out, we had a really nice break from school right here at home. We did lots of fun things like go to the movies and the video arcade. We spent one day in NYC at the Museum of Natural History and the Hayden Planetarium. We went out to eat a few times and saw some friends. We even hung out at home in front of the fireplace while watching videos and playing our new favorite board game, "Apples to Apples" (thanks for telling us about that Lisa!). So, that was pretty much the February vacation. As usual, it went by waaaayyyyy too fast!

Once vacation was over...boom! It was back to our CRAZY lives! Work continues to be insane for me...there is truly so much to do and not enough time to do it in. Somehow, someway, I'll get it done (I hope...lol). The kids continue to be busy with school projects and extracurricular activities. Billy just had his Boy Scout Blue and Gold Dinner which was lots of fun. Molly has been getting ready for her dance recital which isn't too far off. She has been anxious to try out Girl Scouts so I guess I'll be looking into that for her.

Medically, Molly continues to do well overall though her sinus troubles persist. We saw the ENT who told me that it would probably be a good idea to have her adenoids removed. The CT scan showed that they are very enlarged and they might be contributing to her constant respiratory issues. However, because she is Factor 7 deficient, surgery is just a tad more involved. Being Factor 7 deficient means that Molly does not clot as well as those who are not Factor 7 deficient. Of course, not clotting well and having surgery are two things that don't go together so well. It doesn't mean that she can't have the surgery, it just means that she needs to get transfused with FFP (fresh frozen plasma) first (since FFP has Factor 7 in it). Also, she will probably be admitted overnight for observation just to make sure that she doesn't bleed too much when normally, removal of one's adenoids would be an ambulatory surgery. All of this is not likely to happen for a little bit yet. The surgeon is in Israel and while he is gone, we are trying a steroid nose spray as a last ditch effort but so far, I don't see much improvement with the spray. In fact, over the last few days, Molly has been quite sniffily and not herself. I think that she has a virus though. Last night in the middle of the night, she spiked a fever and proceeded to throw up all night long. But by tonight, she seemed much more herself. Probably just one of those 24 hour bugs. We go to the clinic next week for our regular monthly check up. However, this check will be a little more special...this should be our last MONTHLY check up. After this appointment, I think we'll only have to go to the clinic once EVERY OTHER MONTH! Why you ask? Well, because yesterday, MOLLY REACHED ONE ENTIRE YEAR OFF CHEMOTHERAPY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! It doesn't seem possible that a whole year has gone by but it has! And my sweet girl continues to grow and thrive and do so well. Each and every day, I am in awe of her...of her beautiful spirit...her zest for life. I am truly grateful that she is with us and that she is the amazing child she is. She is a true Hero.

Which brings me to my next topic...Molly has been asked by St. Baldrick's to appear with them on national television next Friday morning, March 16th at 9:00 EST on the FOX's Morning Show with Mike and Juliet. The purpose of the segment is to help get the word out about St. Baldrick's and about how necessary it is to raise money to fund research to CURE CHILDHOOD CANCER once and for all. For those of you who don't know about St. Baldrick's, PLEASE, check out their amazing website. I borrowed this "blurb" from their website: St. Baldrick's began as a casual conversation between friends and has exploded into the world's biggest volunteer-driven fundraising program for childhood cancer. Events have taken place in 10 countries and 42 US states, raising over $20 million, and shaving more than 26,000 heads". Ironically, one of the three founding members of this organization is a friend of mine from St. Agnes High School in Rockville Centre, NY. What feels like so many years ago, John Bender and I graduated from St. Agnes, unaware that our paths would cross again in the future in such a special way. Now what is even more strange is that John and Roly knew each other way before John and I ever did. They both served as Alter Boys at St. Christopher's RC Church in Baldwin, NY. They were childhood friends, we were teenage friends and now, John has helped create an organization that I believe will be truly contributory in finding a cure for these awful diseases. Molly has been honored by St. Baldrick's in the past and now it is *our* honor to speak with them about their mission.

So many people have asked me over the years, "What can I do for you"? or "What do you need help with"? Well, today, I'm going to tell you. You can help the brilliant researchers out there find a cure for childhood cancer by making a donation to St. Baldrick's, by praying for the researchers, doctors and numerous health care professionals, by praying for the children afflicted with these diseases as well as by praying for their family and friends. Just this week, another child...a dear friend of ours from the Morgan Center, died as a result of leukemia. Caroline Hurley was a truly beautiful, gentle, sweet little girl. She and Molly went to preschool together for 2 years. When she relapsed after having standard risk ALL...the "good" kind of leukemia, we were all shocked and devastated. She survived more chemo, radiation and a cord blood transplant. But due to a virus she caught after transplant, her body just couldn't fight any more. She died in the hospital after suffering so much. It was not peaceful...it was awful, as the death of any child is. Her parents returned to a home that was still decorated with the family Christmas tree because they didn't want to take it down until Caroline could get home to celebrate the holiday and open her gifts. This has to just stop...I know none of us can bear the loss of one more beautiful child. Children dying and suffering...this is something so far beyond my comprehension...something that fills me with profound sadness and anger and a strong desire to put an end to it, once and for all.

Truly, I am not trying to pressure or guilt anyone into giving money or supporting St. Baldrick's but if that is something you would like to do, we would be so appreciative. If you're interested, you can go to the St. Baldrick's website and sponsor our team of shavees. So far, 4 guys from my job have graciously volunteered to have their heads shaved...one third grade teacher, one physical education teacher, one custodian and our secretary's husband...on national television no less...in Molly's honor. They are hoping to raise at least $5,000 by doing this. If you feel so inclined to donate, at the St. Baldrick's website under the venue name, type Madison Hall in the city of Rockville Centre in the state of NY. If you click on the team, "Molly's Baldwin Heroes", you can make a donation to the team and the boys will get credited with your donation toward their total goal. Together, I know we can really make a difference.

Well, I guess that's about it for now. As always, I can't thank you enough for your care and concern. We continue to be moved beyond words by all of you.

With much love,
Donna

Wednesday, February 14, 2007 11:52 PM CST

Hello everyone,

Thank you all for all of the lovely Valentine wishes as well as all of your kind guestbook messages. I continue to be in awe of the Caringbridge community. The constant support and love you share with us is so deeply touching.

I have been so, so busy lately that I haven't had a spare moment to tend to many needed tasks...including updating our journal! My job as a school psychologist has been great but it is "crunch" time and the pressure at work is on. I have lots of evaluations to do not only for the kids I service directly in my buildings but also for preschoolers with disabilities who will be transitioning to kindergarten in the fall. Even though the fall seems so far off, we actually begin to assess and plan for the needs of these students now so that by September, everything the children need to succeed in school is in place. There is just no way to finish all of my work during school hours, so I end up bringing some of it home and working on it in the evenings after the kids go to bed. Truly, I'm not complaining because I really do love my job...it's just a lot to manage while taking care of the kids, seeing a few patients in my private practice, taking care of the house, managing our finances, blah, blah, blah...I know most of you "get" it. The demands of life are just not easy sometimes! Some days, it can be very overwhelming.

As for the *important* stuff...Molly and Billy are doing just fine overall. Miss Molly took a hefty dose of antibiotics for two weeks to clear up that pesky sinus infection she had. She did pretty well with the medication and I *thought* we had finally rid her of the infection but late last week, she started sniffling, coughing and complaining of "neck" pain again. I took her to the pediatrician who said she had a "drip". We decided to wait a day or so to see if it would clear up but unfortunately, it seemed to get worse instead of better. Sooooo, Molly is once again on another two weeks of antibiotics. Let's hope that *this* time, it does the trick! Tomorrow we go to the clinic for Molly's monthly check up. Let's hope the counts are good and all is well.

Our family has been doing lots of activities over the past month. Billy had his Pinewood Derby for Boy Scouts and that was so much fun. His lime green iPod nano car was one of the coolest looking cars there...though I have to say, this year there were so many amazing creations that the boys made. We have to thank Randy once again for all of his help and hard work. Billy couldn't have done it without you! Billy continues to play basketball and I think he gets better and better each game. Though he loves baseball, I think basketball might just be his sport! Billy has been taking good care of his pal, Buddy our cockapoo puppy. Buddy is getting so big already! He is just a total delight (except when he's pooping or peeing on my rugs)! Both kids adore him and he has been a great addition to our home. Billy has also been having some playdates with kids from school. It's great to see him making such nice friends. He is really starting to feel "at home" in his new school.

Molly continues to dance her little heart out. She hears music and she's off...wiggling, shaking and jumping around. I really think show business could be in her future! We took another trip to the American Girl Place in NYC last week to celebrate our friend, Annie's birthday. It was so great. We went during the week and the store was not at all crowded. It was a total pleasure to shop and have lunch in the cafe without the crowds and confusion that is there on a weekend. Molly has gone to a few other birthday parties lately and each time, she had a ball. She's always up for a party! In fact, she even had the time of her life at a Superbowl party we went to at a friend's home! She was cheering for the Colts and was happy that they won but was even more delighted when she learned that she and I won the 1st quarter and the half of the Superbowl pool we had going! She pointed out that we could just spend our winnings at the American Girl Place and that's exactly what we did! In addition to all of the parties, we have also been going to our public library more often. Both kid really enjoy looking through the books and choosing their own selections. Our library offers so many nice programs and it's so close to our house that it's a great place to spend an hour or two on the weekend.

This weekend, we will be heading south to Florida for a few days. We will be visiting Roly's parents and sister. My two brothers will be in Florida too. My youngest brother lives in the same town as Roly's family and my other brother owns a condo on Ft. Meyer's Beach and he'll be vacationing next week with his family. We can't wait to get out of the icy cold and spend some time with our family. The weather on Long Island hasn't been bad overall but it has been very cold. Yesterday and today, we were the lucky recipients of freezing rain, sleet and snow. I just hate this weather...shoveling is not my favorite thing to do! I am *so* much more a "summer girl" than a "winter girl", that is for sure. I think sitting by the pool sounds awfully good right about now!

Well, I guess that's about it for right now. I had some computer problems and am now using a different desktop. It doesn't have all of the programs my old computer had so I'm having trouble figuring out how to get my pictures in the format they need to be in so I can post them on the webpage. I think I'll be taking some "light" reading on Adobe Photoshop with me to Florida...maybe by the time I get home, I'll be able to figure a few things out! Roly was the computer expert in our family. We sure miss him, in every way, shape and form.

Many, many thanks again to everyone for all of your kindness and support. Mrs. Pam...you are amazing! Thanks for the Valentine goodies and Char, what you do with Project Angel Hugs is awesome. Thank you both so much for thinking of the children.

With much love,
Donna

Thursday, January 19, 2007 - UPDATE

Now really, hold on...I know that *three* updates in a week...that's a new record for this year (and probably last year too!). You have all been so kind with thinking of us regarding Molly's scan that I wanted to update quickly before I run to work...which I am late for...again...sigh. Anyway, the news is GOOD. Molly has sinusitus, and strep, but she has not had a recurrance of cancer, Thank God. She is now on 1800 mg of Augmentin for the next 10 days (her poor little stomach!) but hopefully, it will just knock the infections from her system. She was a real, true champ. She did not need sedation for the scan, as she held perfectly still. She didn't like the IV in her hand that was needed for the contrast but she handled it fine, along with a finger stick. Her WBC is dropping already after just 2 days on Keflex and it is now down to 12,000. We return to the clinic next week to have her nodes reevaluated, as they are still enlarged. Despite all she went through today, she went to school. Her class was entering the lunch room as we walked in and she was literally greeted with cheers. She certainly seems to be well-liked by her classmates. OK, I better get to work. I am really going try to find some time to upload some more of our holiday pictures. There are lots of cute ones. OK, thanks again for checking in.

With love,
Donna

Tuesday, January 16, 2007 -
UPDATE
OK...don't fall off your chairs...there's actually an update on two consecutive days! I just wanted to let you know what seems to be going on with Molly's lymph nodes. She saw the oncologist today and she has two swollen nodes, similarly placed on each side of her neck. They are painful and her doctor thinks they are infected. Her counts indicated that she is indeed fighting something, as her white blood count was a little over 16,000. (Normal is between 5,000-10,000. However, her other counts were generally "normal" and the blood smear didn't show any leukemic cells, thank God. Molly's oncologist order a CT scan to be done on Thursday morning of her neck and sinuses. I fully expect that there is something going on with her sinuses, as she has had one respiratory thing after another lately. Molly's oncologist assured me that he has no reason to think that there is any recurrance of the cancer. He is extremely conservative and I know that if he says not to worry, then there really is nothing to worry about. Whew...Now, just wish us luck getting through the CT scan. Molly will be sedated, which means nothing to eat or drink that morning until the test is done. That should be fun but I'll take it any day of the year compared to what it could be. Thanks for checking in and thanks so very much for all of your good thoughts and prayers.

Tuesday, January 16, 2007 0:04 AM CST
Happy New Year to everyone,

So, it is 2007. It is my sincere hope and prayer that this year will be filled with peace and happiness for us all.

Our family managed to get through the holidays OK. There were many happy moments and hearty laughter as well as moments that were very difficult too. We celebrated Christmas Eve at my brother Van's house, which is what we typically do. It was very nice. Van and Roseanne hosted a beautiful dinner complete with a visit from Santa. Molly cracked us up with what she ate...fried calamari, filet mignon and *TWO* entire lobster tails! What can I say, the kid has great taste! The children had so much fun playing with their cousins and friends. My mother slept at our house and my dad joined us bright and early to witness the opening of all of the gifts (he is just one of those people who is happiest sleeping in his own bed). Santa was very good to Billy and Molly. So were many family members and friends. We can't thank everyone enough for their kindness and generosity. We are still working on those thank you notes!

In the afternoon on Christmas Day, Van, Ro and the kids joined us at our house for dinner. Usually I cook a big feast but I just wasn't up to it this year. There seemed to be no time to prepare, especially working full-time now. So, I catered a bunch of stuff from a great local restaurant and cooked some things myself. That seemed to work out just fine. The schools I work in both did "cookie exchanges" so that filled our platters with all kinds of good homemade cookies for dessert. Our good friends, Joe and Christine came by with their kids for a while and that was a great way to end the day.

Although the holidays were good, we were all a bit under the weather physically. Molly was still coughing, Billy developed a fever and I was wheezing and coughing my head off too. So, instead of going upstate to Rochester on Thursday as we had planned for New Year's, we changed our plans and went on Friday to give everyone an extra day to recover. Also, that gave us a chance to visit with my nephew Joe who was passing through New York. He lives in Florida but he and his girlfriend were visiting some family in Maryland for the holidays. They took a detour to our house on their way back home and on Thursday, we had a chance to visit for a little bit. Joe was living with us when Roly was killed...he was going to school in New York. We surely miss him a lot and it was great to see him, if only for a short time.

On Friday, we headed to the airport for our own trip. We had a great flight to Rochester and were so happy to ring in the new year with my dear friend, Lisa and her family. We relaxed, did some shopping, went out to a Hibachi restaurant (a favorite place of ours to eat!), played games, watched old TV shows, looked through scrapbooks and just had a great time. Billy and Randy created the *coolest* car yet for Billy's Pinewood Derby, a favorite Boy Scout event. They carved that block of wood into a lime green iPod Nano car. It looks awesome. We can't wait to race it at the end of the month.

When we got home from Rochester, it was back to work the next day. It's been go, go and go - non-stop. Finally this weekend, I managed to take all of the Christmas decorations down. With my dad's help, I got the tree into its box and stored in the crawl space. It literally took an entire day to put everything away but I am so glad that it's done. I was just *done* looking at all of it. I am off from work today because it's Martin Luther King day and I am so glad to have an extra-day to get caught up on so many neglected things.

Last night, Molly slept at my parent's house. It was good to have some "alone" time with Billy. He has been giving me (and his sister) a run for the money lately with regard to his behavior and that is really not like him. After talking a long while, Billy broke down and just sobbed and sobbed about how much he misses his dad. He is just so sad and angry about it all and he admitted that he has been taking a lot of his feelings out on me and Molly. It's all just really bubbling up to the surface again for him. He has held a lot in for a long time. I think Billy is afraid to feel really close to me and Molly because he is scared that he might lose us too so he pushes us away and then feels very guilty for it. He feels like he is the only kid going through what he is going through. He is conflicted about feeling so jealous over the attention Molly has gotten and continue to get. It's all so overwhelming and confusing for him. He is seeing a social worker to help him work through these issues and recently he asked to return to the children's bereavement support group so we will be heading back to the Center for Hope on January 29th. I think it will be healing and good for Billy to be with other children who have lost a parent.

On a more cheery note, Billy has been playing basketball and is really loving it. He is very tall for his age (almost 5 feet at just 10 years old...just like his dad) and he is getting very good at the game. Our neighbor had a hoop that he was getting rid of and he was kind enough to give it to Billy so it now sits in our driveway where he practices all of the time. When he's not playing basketball, he has been playing with his new video game system, the Nintendo Wii that my brother George sent him from Florida. I have to admit, it's a pretty cool game system. Even Molly is enjoying it! Billy is also *starting* to enjoy reading more and I keep encouraging him to find the books that really speak to him. He is still bowling on a league and is looking forward to baseball in the spring. Billy is a good student and he is making nice friends at school. In the big picture, he is doing OK.

Miss Molly has been quite busy herself. She is still dancing her heart out and is taking ballet and tap. She tells me that next year, she wants to do Hip Hop. She is obsessed with the movie "Grease" and is loving the new reality show, "Grease...You're the One that I want". Molly has been enjoying her new toys, especially the ones that involve some type of arts and crafts. She has been playing with her new Barbie house and her American Girl toys though I think she loves her Brittany Spears perfume best! She has been feeling OK except that for the last few days, she has been complaining of a pain in her neck...and no, it's not her brother or me. Today, I ran her to the pediatrician, as the hem-onc clinic was closed. She has a number of swollen lymph nodes in her neck and I am truly trying *not* to hit any panic buttons. The doctor thinks that the swollen nodes are likely related to some on-going sinus issues Molly has been having. When she was examined today, she had a post-nasal drip and fluid in her ears. She will probably need to be on antibiotics...again...and may need a CT of her sinuses. Tomorrow, I'll take off from work...again...and run her into the clinic. I'll let you all know what happens as soon as I have any definitive answers. The doctor and the nurse practitioner (who used to work in hem-onc) both don't think the swollen nodes are indicative of relapse but of course, this needs to be checked out. So, it will be a miracle if I don't get an ulcer within the next few months with all of this worrying! That's the thing when you have a child who has/had cancer. You can't just "blow off" a complaint or symptom. Even though you know deep down that it's probably "nothing", you can't help but worry all of the time. So, please, keep her in your thoughts and prayers that whatever the cause of the swollen nodes, it's not anything serious. Also, please keep our dear friends Kendall, Hunter, Baby Donovan, and Russell in your thoughts and prayers. All are struggling through relapses and especially Baby Donovan is having a very difficult time.

Well, I'll try to end on a "brighter" note. Here are just a couple of pictures from Christmas. Since it's 1:00 am already...I just can't load any more pictures tonight but there are lots more to share...if I can find the time to get to it (lol).

Billy and his best friend, Buddy!

It sure is hard to be 5! This is a really cute book by Jamie Lee Curtis...Molly loves it!

Hanging on the couch watching the Disney Christmas Parade.

Take care everyone. As always, we are *so deeply grateful* to you all for your love, care and support. Happy New Year.

With much love,
~Donna

Thursday, December 21, 2006 11:45 PM CST

Hello everyone,

I can't begin to thank you all enough for your kind messages of support, hope and love during this holiday season.

It has been quite a roller coaster ride of emotions over the past month. We have all been feeling the loss of Roly so much yet we are trying very hard to experience the hope and joy this season brings. We know Roly would want us to be happy and in keeping with that, we will do our best to laugh and enjoy one another this Christmas.

The past four weeks have really gone by quickly. I can't believe that in just a few days, the holiday will be here. I am thankful for that because truly, I just want 2007 to come. I am hopeful that the new year will hold many good experiences for us all.

So at this point, all of the shopping is just about done. Most of the wrapping is done too, thanks to Chelsea's help. She will be heading home to Seattle for the week and we will miss her while she's gone. Molly wanted us to have a "Don't go home Chelsea Party" in hopes that we could persuade her to stick around. We've all reassured Molly that Chelsea will be back but for Molly, especially at her young age, goodbyes are very difficult.

We have attended a few Christmas parties and they have been great. We so enjoyed the holiday party that we were invited to by the Morgan Center, Molly's previous school for children with cancer. An incredibly kind man and his wife funded the party at a country club and they went all out. The food was fabulous, the DJ was terrific and Santa...well, he was sure jolly and had so many nice gifts for the children. I have to say, in my opinion, Billy received one of the most special gifts of all. The man who hosted the party was told of our story and Billy really touched his heart. This man lost his father when he was still young and he knows only too well what a hole in your heart this leaves. Hearing that Billy loves the Yankees, he bought him the most amazing World Series Yankee Jacket, complete with patches from each series the Yankees won and embroidery on the back. Billy's face totally lit up when he put it on and he wore it for the entire party. We cannot thank this family enough for their generosity and kindness.

We also have done some fun holiday things like make gingerbread houses, baked cookies and saw a local production of the Nutcracker. The kids helped decorate the house and with the help of my girlfriend and my in-laws, I got the lights up outside.

The last week however has been especially difficult. We were all sick about a couple of weeks ago with a horrible stomach bug but Molly never fully recovered. She just didn't feel well and on Saturday, she started to run a fever. The fever came and went all week and of course, that put a huge knot in my stomach. I took her to the pediatrician who said she looked fine, it was probably a virus but when three more days past with fever, I called her oncologist who wanted to see her. So, after he checked her out, he found that she was wheezing in her left lung and she then began with an awful cough. He put her on three days of IV antibiotics which had us running back and forth to the hospital all week. Also, she started with nebulizer treatments of Xopenex. Her counts were OK and there was no sign of relapse, thank God but I have to tell you, this is how Molly presented when she was first diagnosed so the fear of relapse just about had me having panic attacks again. Today, finally, she did not have a temperature and she seems like her old self again. I am sooooo very relieved! Let's hope she's kicked whatever was in her system so that we can have an uneventful Christmas, at least from a medical standpoint!

Well, I wish you all much peace and joy this holiday season. Thank you, thank you and thank you again for your kindness and gestures of compassion and concern. We have received so many beautiful cards and a few surprises in the mail too. Mrs. Pam...the kids just LOVED the ornaments you sent! Thank you all for your thoughtfulness.

I hope as the holidays wind down and I am not as stressed or busy, that I will be able to update more often. Well, at least that's a goal for the new year.

Until we chat again, be well and take care of yourselves and one another.

Here are a few more pictures that Jennifer from Lasting Impressions Photography took.

Molly

Billy

Molly and Me

Billy and Me

With much love,
Donna and the kids

Thursday, November 30, 2006 0:19 AM CST

Hello everyone,

I hope that you all had a very Happy, Healthy Thanksgiving and are enjoying the upcoming holiday season. I cannot even begin to thank you all in a meaningful way for the tremendous amount of support, love, kindness, caring and concern that has been shared with us. I am truly overwhelmed by your goodness, your generosity and your testimony to the fact that the world is filled with *amazing* individuals that can lift one's spirits, even during her lowest moments.

What I *want* to be able to write tonight is an upbeat entry filled with all kinds of good things that we've been up to. I want to tell you all that the reason for long gaps in between journal entries is just because we've been busy, busy and busy. While it is true that we *have been* really busy with all kinds of fun activities, school and work, our hectic lives are not the only things preventing me from updating more regularly. The honest truth is that often, the reason for long gaps between updates is that I am struggling to get through the days; to keep a smile on my face; to give the kids some sense of normalcy; to keep the house running; to be there for extracurricular activities; and to meet the demands of my job all while now, trying to be excited and happy about the upcoming holidays. I am truly exhausted and emotionally "spent".

Before Roly was killed, I always thought that the first year after losing a close loved one would be the "hardest". That with the passing of each day, week and month, somehow, healing would take place and life would get back to some kind of normal. I have learned the hard way that this notion is not really true, at least not for me. Roly is gone 20 months today. Gone for more than a year and a half. It seems impossible yet it is true. My heart is so heavy and I remain so sad. In retrospect, I think I walked through the first year in a sort of haze...I was on "auto-pilot". Yes, I cried many tears and certainly mourned but lots of my tears were for the kids and Roly's parents, for our family members and friends. Molly was still in the midst of treatment and I just could not allow myself to fully grasp the depth of *my* loss. It has just been so profound that there are no words to convey the depth of this loss to you. The anniversary of Roly's death coincided with Molly completing chemotherapy. It was like a switch was flipped at that moment...my need to be ever vigilant and "on my game"... to make sure that the chemotherapy was being delivered in correct dosages, at correct times, etc. was not there any more. I could breathe a sigh of relief...no more "dirt" medicine (as Molly referred to it because it tasted like dirt to her). Once I was able to relax just a little, I felt like I was hit with an emotional ton of bricks...right over my head. It knocked me down hard and I've decided to share some of this now because if there are other people out there who are going through anything like what we've been going through, I want the truth, our truth to be known.

The anniversary of Roly's death is March 29th. Throughout the spring, I really struggled with my grief. Much of it was and remains very personal. I missed Roly more and more as the days went by, not less and less. Life was getting harder to bear without Roly's presence. Updating the journal became difficult...I didn't want to whine and sound depressing. I didn't want to bring anyone else down or sound unappreciative of all the good things we do have and all of the support we have been blessed with. So instead of updating regularly as I had been doing, I started to wait...to wait until I felt better, to wait until I could share something genuine and good. Unfortunately, as spring turned to summer, I began to become truly, significantly depressed. On the outside, many people would have thought that I was doing OK, but my close friends knew that something was really wrong and different. I began to experience significant insomnia. I couldn't eat and dropped 20 lbs (that's about the only good thing to come out of this). I couldn't concentrate well. I cried every time I was alone and had trouble stopping, even when I needed to. I began to experience severe anxiety and panic attacks. It was not a good start to the summer.

Over the summer, I spent a lot of time talking with a social worker who once worked in children's oncology and then moved over to bereavement counseling. She has been a "perfect" fit for me and I am so grateful that I found her. It doesn't matter that I myself have a Ph.D. in psychology...I still needed to find someone I could talk to about my pain. Someone who could listen and support me, who could provide insight and compassion. Someone that I didn't have to be concerned about with regard to how *my* pain affected *her*. With her help along with other support, I have moved to a *much* better place but life is still not easy nor is it "normal". It's like living a whole different life. We had one life before...and now, a new life after.

Although we "made it" through the first set of holidays, in many ways, it seems more difficult this year compared to last year. The loss is that much more "real". The ache and empty hole in my heart is that much deeper. I want so badly for us to all be at peace...to be able to really feel all the things the carols and songs of the season convey. How I wish it really *was* the "most wonderful time of the year". The truth is that for our family and I would guess for most families who are grieving, this time of year is just a bit harder. Missing an integral, loved member of your family during the holiday season adds on to the already difficult task of meeting life's demands without him or her by your side.

So, truly I hope this entry has not been depressing but rather, I hope it is seen as I intend it to be...honest and true. Learning to live again and finding joy after your spouse, parent or child dies is a monumental task. It is one that seems to be always "in the process of happening" but is probably never really "completed". Each significant event from a child's Christmas concert to a birthday celebration is seen not only for what it *is* but what it *could have been*...if only our loved one was here with us now. I hope that you will keep all of us, those who are grieving during a joyous time of year, in your thoughts and prayers.

Please know how genuinely grateful I am to all of you, for all of you, not only during the holiday season but each and every day.

OK, I will do my best to share some more upbeat happenings the next time I write. Hopefully, I'll have the time, energy and emotional resources to do it sooner rather than later.

Until then, be well.

With love and gratitude,
Donna

Thursday, November 30, 2006 0:19 AM CST

Tuesday, October 31, 2006 11:44 PM CST

A warm "Halloween Hello" to all of our Caringbridge friends,

The kids are finally in bed after quite a busy day. Billy truly *loves* this holiday...after all, FREE candy...and lots of it! Add to that dressing up in an outfit that can really scare the pants off your little sister...well, for a soon to be 10-year-old boy, it doesn't get much better than that.

As for Molly, she seems to enjoy it too but then again, Molly enjoys just about anything. She loves being with her friends be it playing a board game at home, running through a park or trick-or-treating down the block.

For me, well I used to just love this holiday too. Autumn was my favorite season. I loved the beautiful colors of the leaves, the crisp, cool air, drinking hot tea after a long day and smelling the aroma of wood burning in neighborhood fireplaces. While I still enjoy all of those things, for me, they no longer conjure up just warm, happy memories but memories of Molly's diagnosis almost three years ago. It was Halloween of 2003 that Molly was too tired to walk to our neighbor's home to get candy. It was then that she appeared bruised and almost battered. In fact, during the trick-or-treating of that year, my friend Patti joked that I was going to get called in to social services for the amount of bruises she saw on Molly. I couldn't believe that Molly didn't want to run along with the other kids and instead, kept asking me to carry her. I am saddened that instead of being compassionate to that, I was annoyed and thought she was "just carrying on". From that point onward, each day Molly seemed to get sicker. She had fevers on and off, a cold that wouldn't quit and eventually, she developed pneumonia. She was pale and worn and it wasn't long before I *knew* in my gut that something was really wrong. Deep down, as crazy as it sounds, I suspected that she had leukemia. When the phone call came on November 10th to confirm that suspicion, I wasn't totally shocked like some of my friends were.

Fast forward to today...three years later. Molly is off-treatment and in the big picture, she is doing really well. There were big plans for Halloween today. Molly's kindergarten class invited the parents in to help out with all kinds of fun Halloween "centers". We were to write our letters and numbers in shaving cream and make "bony" hands out of clear, plastic gloves stuffed with candy corn finger tips and tons of popcorn. We were to make our own skeletons out of Q-tips after reading a funny book about a skeleton who just couldn't get rid of the hiccups. There was the center that we were to grab a bunch of gummy body parts out of a caldron and graph the amount of each part on a chart. And of course, there was the center that we had to stick our hands in mushy spaghetti and seek out hidden spider rings for our fingers. Following this, there was a Halloween carnival that the PTA had put on for the students in the gym and after school, there was of course, trick-or-treating to do.

Well, some of what I wrote about above actually happened but some didn't. Why you ask? Because of the unscheduled, anxiety provoking trip Molly and I took to the hem-onc clinic today. Those of you who "follow" our family know that Molly tends to get some pretty severe nose bleeds. Well, she had a couple over the weekend when we were away in PA at Woodloch Pines (that's a story for another time) and then yesterday, between home and school, she had 6 more. Then, all last night, she was up complaining that her ear hurt. Sorry to be gross (but heck, it *is* Halloween), yellow boogers were coming out of her nose. She said her body hurt and that she didn't feel well. I knew in the middle of the night that she would need to go to the doctor and in all likelihood, the doctor in the case would be her oncologist but I tried to stay optimistic and called my dear friend at 7 am this morning who happens to be our pediatrician. Because she sometimes knows me better than I know myself, she told me to take Molly to the hem-onc clinic. She told me that I wouldn't rest easily until I knew Molly's blood counts and truth be told, she was right.

OK, so now comes the *really* challenging part. How do I take Molly to the hospital to get poked and prodded on Halloween and still let her have some fun? How do I manage the early meeting I have scheduled at work requiring the presence of more than half of a dozen professionals and figure out how to leave that meeting early so I can take Molly to the doctor? Even though the rational, intellectual part of me knew that she was fine with regard to the leukemia, how do I manage the emotional, anxious "mommy" part of me that can't help but remember that 3 years ago, this is kind of how it all started? And how do I do all of this without the help and support of my husband and Molly's dad?

The answer is to all of those questions is that you just do it, even though it's hard. You just have to keep going and try not to look back. So, early this morning, I got dressed and went to work after just a couple of hours of sleep. I had my meeting and explained the situation to the principal who was more than understanding and kind. I left work early and ran to Molly's school, where I let her go for a few hours. Once at school, we did those centers. We couldn't however stay for the yummy snack the class moms baked or the carnival the parents put together. Molly was a trooper though. She barely complained about having to leave and we were off to the hospital where she did in fact get poked and stuck and prodded. She was *not* happy about any of that. I wasn't surprised to find out that her white blood count was elevated because she is fighting both a sinus and ear infection. But I was surprised that her doctor wanted her to have one hefty dose of IV antibiotics before switching over to oral medication for the next 10 days. So, Molly and I spent a few hours at the clinic, where when she wasn't hooked up to the IV, she trick-or-treated. After she was infused, we headed home and made it just in time to get ready to trick-or treat in the neighborhood. This year, there was nothing that was going to stop Molly from joining the other kids. So, on with her costume, on with Billy's and then out the door to go from house to house with lots of friends. Luckily, my mom and dad showed up and by the time they did, Molly was truly wiped out. They took her with them to my brother's for a little bit while Billy forged on to get as much candy as possible (I just want some of those $100,000 Grand Bars and some Junior Mints!) After the trick-or-treating, Billy and the neighborhood kids all had pizza together at a friend's house while I ran to 2 different pharmacies to find Molly's antibiotics that she needs for tomorrow. By the time we all got home, bed couldn't come soon enough for any of us. So why am I up writing this entry at midnight instead of sleeping? Because you can't just turn it all off just because you want to. Because sometimes, the emotion of the day doesn't catch up with you until it's just about over. I guess today was one of those days.

Once again, in the big picture, it was all good. Molly and Billy were able to do most of what they wanted to do. Even though Molly is battling a sinus and ear infection, she's still in remission from leukemia so just about anything else, I can deal with. Molly's so tough that almost nothing gets her down and stops her from doing what she wants to do. We had fun with our friends and family and we all got through another holiday without Roly, which is never easy to do. So again, we are thankful and look forward to another day...but hopefully one with less surprises, more sleep and more stability.

I hope all of you had a great day today. Here are a few pictures from Halloween 2006.

Love,
Donna

Thursday, October 12, 2006 10:13 PM CDT

Hi everyone,

This is just a really quick note to let you all know that we are doing *fine*! We have a new addition to our family...a 10 week old cockapoo puppy named Buddy and he is just the cutest thing ever! But boy, taking care of him and the kids and working, etc, etc, etc...well, you can imagine it's been really busy.

This weekend I don't have too many things planned so it is my hope to sit down and write a *real* update but for now, here's a couple of pictures I thought you might enjoy!

Buddy...our cutie!

Billy doesn't look too happy, does he?

Molly is thrilled with our puppy too!

Buddy seems to be a fan of Billy's too!

Many, many heartfelt thanks to all of you who continue to check in on us...it is so deeply touching and kind of you all.

With much love,
Donna

Sunday, September 24, 2006 8:49 PM CDT

Hi everyone,

So, the start of the school year has arrived and overall, it has been going really, really well for us all. Both Billy and Molly truly seem to be happy and secure at their new school. I had the pleasure of attending "Sit in Your Child's Seat Night" for both kids and I have to say, I really like both of the teachers the kids have. I don't want to "jinx" anything but I'm optimistic that this is going to be a good year in school for both Billy and Molly.

As for me, I am adjusting to being back to work on a full-time basis after a three year break. Well...some break! I guess I should say after the last three years during which all of our lives were turned upside down, inside out and backwards after battling Molly's cancer and losing Roly so unexpectedly and tragically. But nonetheless, I am back to work. I am split between two different elementary schools and everyone has been so welcoming and kind. The more I get to know the principals and staff members, the more comfortable I feel. In a way, it's kind of like returning "home" again. One of the schools I am working in was my first placement when I joined the district more than a decade ago. Though almost all the staff has "turned over", the building is familiar and so is the job itself. I was a little worried that I might not be "up to par" after being out and having gone through so much but to be honest, I'm still good at what I do...it's kind of like riding a bike. Some procedures have been updated and In have to adjust the way I do things a little but that is truly no big deal.

The biggest challenge facing me right now is managing our daily lives with 40 hours less per week available to me to do that. All of the things I used to be able to do during the week like haircuts, food shopping, errands, going to the gym, etc. all have to be fit in around the school schedule. I have asked Chelsea, our nanny, to pick up the slack in some areas and she has been great about doing so, especially since the kids are in school during the day. But I still rely on her for help after school and on the weekends from time to time so I can't ask the girl to work 24/7. The kids both have full schedules with regard to extracurricular activities. Billy is playing basketball, bowling on a league and attending Boy Scouts. Molly is taking tap and ballet, piano lessons and she too is bowling on a league. (She just got her own hot pink 6 pound bowling ball...boy, was she thrilled). Of course, everyone still goes to therapy, if that counts as an "extracurricular activity" and I am seeing patients after school at least a few days each week. In order to go to the gym, I have to get up by about 5:30 so I can be at the gym a little before 6, work out for an hour and then come home, shower and get ready for work so I can be out the door by 8:00 am. By the time the weekend comes, we are all ready for some "down" time. I try not to over-schedule us on Saturday and Sunday so that we can just spend time with each other as well as with our family and close friends. This weekend, we had dinner with the Rosenbergs on Friday night. Saturday, I met my friend Christine at the gym and then I took the kids out to lunch and to see a movie, "Everyone's Hero". It was cute...a baseball movie for kids. Then, Billy, Molly and I hung around Borders Books for a while and eventually we went home and hit the sack kind of early. Today, Molly and I went to the gym in the morning (they have babysitting there...Molly loved it because they were showing "The Little Mermaid 2"...her favorite movie...why? you ask....I don't know) and then the kids and I hung around the house until my brother picked us up to watch my niece play soccer. Then we had dinner with my brother's family and now, the kids are in bed so I can finally write an update!

One thing that Molly and I did this week was attend a luncheon in NYC for an amazing fundraising organization, St. Baldrick�s. This group is so totally necessary and wonderful in what they do. Please, when you get a moment, check out their webpage. St. Baldrick�s was started by three guys and one them ironically, was someone I graduated high school with! These men started this organization as a way to raise awareness and money to fund the research needed to CURE childhood cancer. Did you all even know that September is Childhood Cancer Awareness month? (Well, most of *you* probably know that but what about the rest of the lay population? Why isn't pediatric cancer given more coverage in the media?) Well, St. Baldrick's is truly working to bring pediatric cancer to forefront, both in terms of awareness and funding. The group fully funded a research fellow at our hospital this past year and they are doing more and more all of the time. St. Baldrick�s is a whimsical twist on St. Patrick's Day - when brave volunteers agreed to shave their heads bald to raise funds for childhood cancer research. For the past two years, Molly was an honoree at one of the many St. Baldrick�s events that took place. People shaved their heads in her honor and in doing so, helped to raise money to win the battle once and for all. Molly and I were asked to attend the luncheon on Thursday so that we could share with the media what this organization means to us and why it is so crucial to raise funds to support the research needed. I spoke (and Molly interrupted...lol) along with many other doctors, researchers, participants and another parent. It was a great experience. After the event was over, Molly and I headed to the American Girl Place where we met up with our friends, Maryellen and Annie. How could we pass up a chance to visit there when we were only blocks away? Even though Annie just finished getting chemo at NYU, she insisted on going to meet us (a girl after my own Molly's heart!) We had high tea and did a little shopping but mostly made a list for Santa. It was a great day overall...worth taking a day off from work and taking Molly out of school for the day.

So...that's what's been going on over here. Basically, it's been busy, busy and busy (but mostly, in a good way). I didn't forget about finishing the update about the cruise. I just truly haven't had the time to edit the photos, resize them, upload them and write the html code needed so that you all can see them but I give you my word...I'm working on it (lol)!

Once again, I thank each and every one of you that takes the time to check in on us, leaves us a message, thinks or prays for us and much more. You are amazing and we are always grateful. I also wanted to leave a link for our little friend, Russell's caringbridge page. He is going through so much now and so is his family. Please keep him in your thoughts and prayers. He is one very special little boy.

With love and wishes for a good week for you all,
Donna

Thursday, September 7, 2006 9:50 PM CDT

Hello everyone,

Before I continue to tell you about our vacation, let me tell you a bit about our first day back to school. Yesterday was quite a day in the Guarton household. Molly began *regular* kindergarten and I am just so truly thrilled that she is healthy and able to go to school with the kids from the neighborhood. She woke up and shared that she was nervous but it was an excited type of nervousness. She had picked out her outfit the night before but got toothpaste all over it when she brushed her teeth. So after some "discussion" about a new outfit (gotta love little girls and their ideas about what is appropriate to wear to school) and a quick change, Molly was ready to go to school. When we arrived at school, Molly's teacher greeted us and her classmates. Her teacher seems like a gem. Molly led the line as they walked into the building and off she went with her Minnie Mouse backpack, a wave and a smile. Once she was out of sight, I couldn't help but cry. So many mixed emotions wrapped up in those tears. Joy, relief, pride as well as such deep sorrow that Roly could not have been by my side to witness this milestone.

Molly and Billy at home before the 1st day of school.

Molly with her backpack before school began.

For Billy, yesterday was a big day too. He attended the same small, loving, wonderful private school from preschool through the end of last year. This year though, we decided it was time to join the neighborhood kids and give the local public school a whirl. Like his sister, Billy was nervous a bit too but also excited. He allowed me to take a few pictures but complained profusely about it in between shots. Once we arrived at the school, Billy didn't want me to stick around, for fear that I, along with my camera, might embarrass him! He walked right up to some kids, introduced himself and asked who their teachers were. He just fit in so beautifully...in such an easy, relaxed way. I couldn't have been prouder. He came home all smiles and told me that he just loves his teacher. I am so hopeful that this will be a good year for Billy.

Billy before the start of school

Well, it was not only back to school for the kids but for me too! This week, I returned to my full-time job as a psychologist in one of the local school districts. After being on leave for three years, I sure didn't want to go back..at least on a full-time basis but it was either do that or resign. I'm just not ready to resign now. I think I'm as bad as the kids when it comes to not wanting summer to end. I have been placed in two really lovely elementary schools and am splitting my time between both. The faculty and administrators have been great and I'm sure once I get myself acclimated, it will be fine but right now, it all feels so overwhelming. It's so hard to manage everything it takes to run a household while working full-time and being the only parent. In addition to my school job, I am seeing a few clients in my private practice, which is something that I love to do but again, it's hard to manage with regard to finding the time. We are still trying to get the schedule of extracurricular activities down and I think it will take a couple of weeks before we get into some kind of a good routine.

I have to share one funny story about the start of school. After Molly got home yesterday, she decided to throw herself a party to celebrate her first day of kindergarten. She got our nanny Chelsea to make her the most beautiful cupcakes and Molly made some decorations and invitations. (Of course on such short notice, the guests consisted of me, Billy, Chelsea and my parents!) She sent me to the party store for streamers and balloons, which I of course, bought. We had to sing "Happy 1st Day of Kindergarten to you" and then had to endure some party games with Molly's stuffed animals. She was tickled pink with herself. She actually said out loud..."At this party, I'm the boss. I'm in control and I get to make the decisions". God bless her kindergarten teacher. For all of our praying friends, please remember to keep Mrs. Notti in your prayers. Please pray that she has the patience of a saint...she's going to need it with Molly!

Cupcakes for the "party".

The party girl herself!

Billy and Molly at her "1st Day of Kindergarten" Party

On a much more serious note, I am sad to share that one of our very good friends from the Morgan Center relapsed this past week. Russell and Molly started school together and became fast friends. Russell's parents are the nicest people and are heartbroken over this news. Like Molly, Russell was also treated for ALL. It's so hard to go through treatment for so long and then to start all over again, this time more knowledgeable about things you don't want to be knowledgeable about as well as more scared. Russell's mom will be starting a Caringbridge page for him but hasn't done so yet. Please, keep this beautiful family in your prayers at this very difficult time.

Thank you all so much for continuing to check in on us and for sharing such wonderful entries in our guestbook. You are all so special to us and we truly appreciate your kindness and support.

I'll get to more about the cruise in the next entry.

With love,
Donna

Thursday, August 31, 2006 8:16 AM CDT

Well, hello everyone!

We are back from our vacation and I must say...it was truly a *wonderful* getaway. We left for Florida on a Thursday and checked in to Disney's Beach Club Resort for 2 nights where we met up with two of the families we traveled with, our dear friends the Rosenbergs and Fredericks. What a beautiful hotel the Beach Club is! The pool was the nicest pool we have had the pleasure of swimming in at a resort. It had a sand bottom, which was kind of cool. There was a terrific water slide, that we all went down numerous times. There were a few hot tubs, a "lazy river" and a great play area with sand and shallow water for the young kids. The hotel is located within walking distance to Epcot and there is a great boardwalk with restaurants, shops and carnival games. We loved the hotel so much that we didn't even bother going into the theme parks! Instead, we just relaxed and played and got ready for our cruise. Somehow we got upgraded to the concierge level in the hotel and that was an extra treat. But the best treat of all was that Roly's sister Vicky, and my nieces Megan and Gabby came to visit us in Orlando. Billy and Molly were so happy to see their cousins and it was great to see Vicky and spend some time with her. Here are some pictures from the hotel: (For those of you on dial-up, sorry for the time it will take to load this page!)

Billy in the pool

Molly showing off

The Lazy River

The kids and me eating ice cream...yum!

Billy and Minnie...at a character breakfast at the hotel

Gabby and Molly at the breakfast

On Friday, Vicky and the kids headed back home because Megan had to work. The rest of our group headed to Fort Wilderness, another Disney resort where we went to a dinner show called the "Hoop Dee Doo Review". It was a great Western show with lots of singing and comedy. Both Billy and our friend Joe got called up on stage to participate in the show. That was hilarious. Both "boys" did a fabulous job! Unfortunately, my video camera broke right when they were on stage but at least I have still pictures. Here are some shots from that evening:

The gang outside the Hoop Dee Doo Review

Cowgirl Molly!

Don't mess with Billy!

Billy in the show! He was terrific!

On Saturday, we checked out of the hotel and headed to Port Canaveral. Our friends arranged for a super-stretch Hummer limo to take us all to the Port. That was the craziest car we ever rode in! It had a huge TV screen and enough room for all of the kids to lay down and watch a movie while we traveled. I decided to stop off at an outlet store and get a new video camera before we went on the cruise. Can you imagine what it was like negotiating for a "good price" on the camera as we pulled up in this Hummer limo?! That was interesting! Still, I really wanted to video the trip so we could remember the fun. One of the things that gives me comfort and I'm sure will be treasured by the kids in the years to come is all of the video we have of Roly. Billy and Molly will still be able to hear his voice when they need to...they will be able to see him joking and in action. To me, that is priceless. Here are a couple of pictures from the ride to the Port.

Kids in the limo

Billy and me in the limo

Well, I have lots more to tell you all but not enough time now to do it so I truly promise...within a day or two...I'll put "Part II" of our trip up on the page. It was a blast.

Thanks to everyone for checking in! Speak to you all again very soon.

Love,
Donna

Wednesday, August 16, 2006 10:56 PM CDT

Hi there everyone,

Boy, it's (once again!) been too long since I've updated. We have really been enjoying the summer and are sad that it is coming to an end. But for us, it is going to go out with a bang! In a few hours, we are headed to Florida to go on a Disney Cruise! We are celebrating Molly's completion of chemo and we are thrilled to be able to do it! Molly is doing *so well*, thank God. She is getting stronger and growing bigger by the day. This trip was planned before Roly's death...it is very, very bittersweet for us. I know that he would want us to keep these plans so that is what I am doing. The kids are so looking forward to it.

When we get back...truly, I promise to update with lots of pictures and stories.

Thank you, thank you and thank you again to *everyone* who cares so deeply and continues to check in on all of us.

We hope you have a great couple of weeks...talk to you all when we return from the trip.

With love,
Donna

Thursday, August 31, 2006 8:06 AM CDT

Wednesday, August 16, 2006 10:56 PM CDT

Wednesday, July 19, 2006 10:33 PM CDT

Hello everyone,

I hope this update finds you all doing well. Here in Long Island, the last few days have been wickedly hot. Today it finally cooled off after quite the thunderstorm last night. We have had much more rain this summer than we would have hoped for but perhaps better days are ahead. Judging by the forecast though, I don't want to get my hopes up! All of the rain we have had has not been good for us because our newly finished basement keeps flooding! It seems that the foundation has a pretty significant crack in it and when it rains really hard (which it has been doing a lot), water literally pours in through the crack at such a rate that well...lets just say the "wet-vac" and I have become good friends. I have found someone to repair the crack, which means digging down to the base of the foundation of the house, filling the crack, placing tar and tar paper and sealing it somehow. However, the repair man can't come for another week or so. Keep your fingers crossed that we don't get too many more strong rain storms!

As for other happenings, I have to say that things have been relatively calm this summer. We have been busy but we have not been running around trying to do everything. Last summer I tried so hard to keep things "normal" (despite the fact that life was and still isn't anywhere near "normal"). I didn't want the kids to miss a beat. Somehow I thought that because they lost their dad, they shouldn't lose anything else...they shouldn't "miss out" on invitations to do things and activities. I don't know how but somehow I managed to keep the busy pace Roly and I had set together...the pace that was intended for two parents to manage, not one. At least I managed to do that for a good while but after a year, I have to be honest and tell you that I just can't do that on my own anymore. I became too tired and just too worn out. I have really had to re-think many things and have been re-prioritizing and making difficult choices. We have had to say "no" to many invitations and I hate disappointing those people who care enough to reach out to us, to include us in events and activities. But I also know that there is no way to keep going and going without totally burning out. So, we are taking things at a slower pace but even our slower pace is probably pretty busy for lots of other people (lol).

Lots of our weekends are spent down at the beach...that is when it's not raining! I truly love the beach club. It's been great to relax and spend time with our really good friends. Molly has been swimming up a storm and Billy has been a little entrepreneur. He has saved the candy he has gotten from party goodie bags and other places and "sells" it at his own "candy stand" at the end of our cabana row. Whatever keeps him happy!

In addition to the beach, we have been swimming a bunch in our own pool. Molly does full flips off the diving board and she is able to swim by herself, without "floaties" in the deep end! Billy has been having tons of fun with these water canons our friend Maryellen brought over.

Both kids continue to enjoy camp so much. Billy has been going on great trips and Molly seems to be making lots of new friends. I'm so happy that they are having such fun. When they are not home, I've been going to gym with my friends and continuing on with "Mission Organization" at home. I have to say...thanks to my friend Maryellen, the house is getting there! She is the queen of smart, creative ways to store things. In addition, I have really been throwing out or donating lots of things we really don't use. Boy, it's amazing how much excess "junk" can build up over the years!

A couple of weeks ago, my dear friend Lisa and her family came from Rochester to visit Long Island. We were invited to Lisa's brother's house for a barbeque and we all had a wonderful time. Here is a picture of Molly and her buddy, Caroline (Lisa's daughter). Lisa, my kids can't wait to see you all again...hopefully sooner rather than later. Oh, and Happy Birthday in a couple of days! Hope it's a great one.

Molly and Caroline relaxing on the hammock.

Another exciting thing that we did recently was go to a Long Island Ducks (baseball) game with Molly's preschool, the Morgan Center. We go every year and it's always a total blast, as the school is usually granted a sky box to view the game from. But this year was *EXTRA SPECIAL*! Billy was chosen to throw out the first pitch of the game! Molly's amazing and wonderful teacher, Miss Nancy, selected Billy to represent the school because she knew it would mean the world to him and to honor Molly for just completing her chemotherapy. Billy was announced and his name was up in lights on the scoreboard. He was so very happy and thrilled to be granted this honor. Here's a couple of pictures of that day:

Billy throwing out the first pitch of the game!

Molly and Billy with Morgan (for whom the Morgan Center is named) and her big brother Trevor.

The kids and me following the Ducks game.

Another fun thing we did recently was to celebrate my dad's birthday. I think there is nothing my dad loves more than his grandchildren so he was really thrilled to eat dinner with them at my brother's house and then share some of that great birthday cake. Here's a picture of all of the grandchildren with my dad:

Grandpa and the kids

Grandma and all of the girls watching TV in Aunt Ro and Uncle Van's big bed!

Well, I guess it wouldn't be fair to leave out this last great thing we did...Billy, Molly and I went with a bunch of our good friends to see the American Idol Concert! The kids had such a great time! It was Molly's first *real* concert and she loved it! She was screaming like a teenager, especially for Elliot, whom she affectionately refers to as "Elfie", because she thinks he looks a bit like an elf. She also screamed her head off for Mandisa, a favorite of all of us. Billy had a great time too because he got to sit away from all of the screaming girls with one of his best buddies, Matthew. We couldn't get all of our seats together so Billy and Matthew sat with Matthew's mom in an area away from us. It was a really, really fun night.

Here are the girls holding up their adorable signs!

Molly and Melanie having fun at the concert! (Many thanks to Melanie's sister, Jenna, for making Molly the Mandisa sign! She loved it!)

Billy and Matthew at the concert, with eyes just shot from all of the chlorine in the pool along with sun!

Well, I'll end this update off on the best note possible by telling you all that Molly continues to do so well medically. Her recent check-up was fine...her counts were all good and she is feeling and acting just like a "normal" kid. We are *still* waiting for her to be re-fitted for her leg braces to help with the toe walking, as the first pair was causing blisters and pain. But truly, after battling cancer, it's no big deal. We'll wait and she'll get them eventually. And if she walks on her toes more than she should...well then maybe she'll just be a ballerina!

I have to thank each and every one of you who care enough to continue to check on our family. You are amazing. I'm so touched by the guestbook entries, even when I haven't had the chance to update for a while. We all so appreciate your kindness, support, love and prayers. Thank you all so much. I want to give a special thank you to Mrs. Pam, who never forgets my kids and to Katherine and Kathy...two amazing people who bless Molly with the most beautiful hand made cards. We so appreciate everything.

Hope you continue to enjoy your summer!

Love,
Donna

Sunday, July 2, 2006 11:37 PM CDT

Hello again and Happy Summer to Everyone,

I can't believe that the 4th of July is already upon us! Summer is our favorite season and we are so thrilled that it has arrived but boy, is it ever going fast!

As usual, we have been busy...but not in a frenzied, crazy kind of way. Both Billy and Molly started camp and they are soooo happy about it. Billy is going every day for full days while Molly is going three "mini-days". They both take their own bus and I can't believe it but Molly got on the first day and was all smiles. It is the first time that she has been "on her own", away from me, my family or Chelsea for long chunks of the day. When I asked how her first day was she told me, "Not as great as I thought it would be...because I was missing you" but truthfully, she really enjoys being around so many kids and doing lots of fun activities. Each day, the kids swim in the camp's pool. They make terrific treats to eat in "Incredible Edibles" and have been busy with all sorts of sports and arts and crafts. Billy, being older, gets to go off the camp grounds for day trips to places like an amusement park, laser tag, bowling, rock climbing and more. Camp is truly the highlight of his summer, though we are planning on taking a wonderful vacation before school starts. We will be going on a Disney Cruise with our good friends and that promises to be a blast.

Billy getting on the bus for camp

Molly isn't too excited, now is she?

On the bus, ready to go!

When the kids are at camp, I am busy at home trying to get organized and tending to things that need attention. I will be returning to my job as a school psychologist in the fall and it will be a full-time position. I'm a bit nervous about working full-time and managing the kids and the house and everything but Chelsea is staying on to help out and my parents are always a tremendous source of support to all of us. I also joined a local gym with some of my girlfriends and have actually been going at least 3 times a week. That has been fun and a good outlet for lots of different emotions. It's the first time in my life that I can honestly say that I really enjoy "working out".

On the weekends, we have been going to the beach as much as possible. We have really been enjoying our cabana and all of the activity that goes on there. We have a great location, right near the pool and playground, as well as the concession stand and bathrooms. We are making some new friends and have been visiting with other families that we know who also have cabanas at the same beach. Yesterday, we spent the entire day down at the beach and watched the fireworks at night. Overall, it was a great day. The kids were worn out by the time they got home so today, we just hung around our house and enjoyed our own pool in the backyard. A couple of our good friends came over and we had a nice, relaxing day. We'll probably head back to the beach for the 4th, that is if the weather is good. Let's hope so.

Miss Molly continues to do well medically. She looks terrific...and despite all of the sunscreen I put on, she is developing quite the tan. She could model for Coppertone soon! In fact, all of us tan quickly...it must be that combination of Mediterranean and Latin blood! Molly is feeling well and is acting just like a "regular" kid. There is nothing that brings me more joy than having her well enough to do all of the things 5-year-olds should do. Her next check-up is next week and I'll let you all know how it goes.

Molly also had her first sleep over...at Grandma's house! She was so excited to spend the night with my parents and she made it without too many tears. Just a few when I called to check on her and at bedtime. But my mom was able to soothe her at night and my dad cooked her his famous eggs in the morning so it turned out to be a great experience...for us all. Billy didn't want to go so we spent some special time at home, just the two of us. I think he truly loves when he gets all of the attention and after all, who could blame him!

As for me, I'm doing OK. This is a bit of a difficult week for me, as my wedding anniversary is on the 6th of July. Roly and I would have been married 15 years this week. Things like this still break my heart. People say that time heals and perhaps it does but as for now, the pain from the loss is still so deep and real.

To those of you who watched the documentary, "A Lion in the House", thanks for watching. It was a difficult program to get through because it is all so tough to see and even harder to live. It gives a glimpse into what life with childhood cancer is like, especially when complications and relapses occur. Please continue to remember all of the sweet kids who are fighting for their lives. Your good thoughts and prayers are so appreciated. Please, especially remember Kendall, Hunter, Cameron, Baby Donovan, and Keegan.

Hope you are all enjoying the summer!

Happy Birthday America!

Love,
Donna

Tuesday, June 20, 2006 4:24 PM CDT

Hi everyone,

Again a long gap in between updates...and again, my apologies for that. Things here in New York are going along fine. Both kids finished school and their graduation/moving up ceremonies were emotional and beautiful. For Billy, he is leaving the comfort of one the best independent schools that I know of and will be entering our local public school. I've made the decision to change because his prior school, though awesome, is just so small that it has started to become a social hindrance rather than a support. Billy is anxious about the change, as I am too but we both know that if he is unhappy in public school, he can always return to his old school. His moving up ceremony was so special...the kids sang a few songs, some touching speeches were made and we got to spend some time with incredible friends and faculty. I'm sure we'll be back to visit in the future.

For Miss Molly, she "graduated" from The Morgan Center, which is a special preschool for children with cancer. The Morgan Center has been our safe-haven through all of the insanity that has taken place over the past couple of years. It has been comforting, supportive and a place where Molly could escape cancer and just be a kid in preschool. We have made some awesome friends there and I'm sure those relationships will continue. Molly's graduation was a day of very mixed emotions...I was thrilled to see her no longer needing such a school but also sad because it is such a special place and we will miss it so much. Of course, at both Billy's and Molly's ceremonies, Roly's absence stung so much. How he would have loved to have been witness to these milestone events. I just hate that everything is always "bittersweet" and that all of us can't just experience joy without other tough emotions tugging at our hearts.

Father's Day on Sunday was difficult here, as I'm sure you can imagine. The kids both wanted to go to the cemetery, so we did that. Billy carried the vase and filled it with water and Molly arranged the flowers we brought for her dad. The children felt the need to "do something" for Roly and it broke my heart that this is what they could do. They should have been at home wrestling with him and making him an awful breakfast that he would have raved about. Life is truly unfair sometimes. After the cemetery, we headed to the beach club and met up with our friends. Weather wise, it was a beautiful day and the kids really enjoyed the ocean and sand. Later, we went to my brother Van's for dinner and spent some time with my dad. Though the day turned out OK, it was tough overall.

I am making a concerted effort to slow down this summer because I am going to burn out if I keep going the way I have been. I'm sure the summer will still be very busy but relaxing and just enjoying some time at home are on the agenda as well. I will be returning to work full time in the fall so this summer, I have a few tasks at home that I want to accomplish before that...like clean out the crawl space and organize closets...you know, the fun stuff! It's kind of overwhelming when I look at how much junk needs to be sorted through. One of my friends is a real "organizer" and she's offered to give me a hand so between her expertise and some hard work, I think we'll get it done.

On the medical front, I am THRILLED to tell you that Molly is doing really well. At her last check up, her counts were all PERFECT! Even her immune function is recovering and I am just so grateful and happy about that. She still gets an IV antibiotic, Pentamidine, once a month prophylacticlly to protect her from pneumonia and other related illnesses. Since she no longer has a mediport, she now gets IV medication peripherally and she handled the IV in her hand like a real trooper! She is one tough cookie and I am so proud of her...both of the kids actually, as they are such resilient youngsters. She is growing and looking healthy and strong. The scar on her chest where her mediport was is unfortunately getting very thick and raised. Though it's not a medical problem per se, cosmetically it doesn't look great and Molly seems to be becoming a bit sensitive about that. I'm hoping that something can be done so that it shrinks and isn't so prominent. As for Molly's leg braces, we got them but they were causing blisters on the outside of her little toes and they were digging in too much to her calf muscles. So, we went back to the orthopedic place today and the person who took care of her today said he wanted to just remake the braces rather than adjust them. Hopefully, they will be ready by the end of the month. These braces are needed because Molly's heel cord muscles are too short and she is walking only on her tippy toes. She needs to wear the braces at night so that the muscles stretch and so she can get her foot flat on the floor more easily. Once the muscles stretch, she will probably need physically therapy to acquire the skills she is lacking now but compared to battling childhood cancer, this is a walk in the park.

Speaking of childhood cancer, I wanted to make you all aware that there is a special documentary about this very topic called "A Lion in the House" airing on PBS tomorrow and Thursday (6/21 and 6/22). It is a two part series and it has gotten excellent reviews. My friend Lauren described the documentary in the following way on her son, Fergus' webpage and she did it so well, that I am plagiarizing! (Thanks Lauren).

"A Lion in the House" follows five families affected by childhood cancer. Three of the children have leukemia. There are cures, relapses, and even deaths in this movie, I believe. It will be painful and sad at times, as it should be. But I expect you will also see laughter and hope and even joy. Children with cancer are children first, and they find ways to continue living even as their bodies fail them. It feels important to me that many people see this movie, from the general need to make public the faces of childhood cancer". I have shared much of the last 2 1/2 years on this website, but I suspect this movie will share more--more of what Molly has experienced, and more of what we haven't experienced but often fear. So, if you can bear it, please watch this movie, for Molly, for me, for all the families who can't just turn the TV off and walk away. To find out more and check your local PBS broadcast schedule on the extensive companion Web site:A Lion in the House.

I hope all of you are doing well and I thank you from the bottom of my heart for your continued love, support, messages and prayers. I have said it before but I will say it again, the Caringbridge Community is absolutely awesome.

With Love,
Donna

P.S. I will try to get some new pictures up soon...I wish I could figure out a really fast way to do that!

Sunday, June 4, 2006 10:57 PM CDT

Hi everyone,

I know there has been a big gap in between updates and I'm sorry if I caused anyone to worry...we are all fine. Just busy, busy and busy! The last few weeks have been filled with activities. This week, both Billy and Molly finish school. There are lots of "year end" things to do. After that, it should calm down a little and I'll be able to fill you in our many activities. I have taken lots of pictures and will post them when I get a chance. It just takes time to edit the photos, resize them and upload them to a hosting site so that I can post them on caringbridge...but I promise, I'll get to it in the next week or so!

Here's the "cliff note" version of what's been going on...

Billy has been playing baseball at least a couple of times each week. He just had his "moving up" ceremony for Boy Scouts and is now a "Webelos". He marched in the Memorial Day parade in town and carried the American flag for quite a while...he did a great job.

Molly had been rehearsing quite a bit for her dance recital which was yesterday. She did great! I wish there was a way to upload video because you would get a real kick out of seeing her! She has been to a bunch of birthday parties and has really been enjoying the warm weather. She has also had a lots of play dates and it is really great to see her acting like a "regular" kid. She will be seen at the clinic on Tuesday for her monthly check up. Of course, even though I know that everything is likely to be fine, as the day approaches my stomach is in a knot. I just want to hear that all is well and that we don't have to go back for another month. Keep your fingers crossed, OK?

As a family, we have been busy with activities too. We got a cabana down at one of the south shore beaches so we have been shopping for the things we need and have been getting set up for summer. This weekend it rained a lot so we didn't go but last weekend we really enjoyed some time down there. We have lots of friends that have cabanas near by and there are tons of kids to play with so when Billy and Molly are not in day camp, they will have lots of friends at the beach.

In addition to getting ready for the summer, we have been to our friend's First Holy Communion Party, another friend's baby shower and another friend's Christening. It has just been a crazy time but fun filled too. I have been working a bit too back in my school district doing some per diem testing so that has been time consuming as well.

I have to thank all of you who continue to check on us and care so much. It truly means a great deal. Hope you all have a calmer week than the one we're about to have (lol). Take Care!!

Love,

Donna

PS. Many thanks to those of you who continue to send the kids little surprises in the mail...they so enjoy getting their own mail! We especially want to thank Katherine and Kathy who still send Molly so many beautiful cards, Brenda for all of the great stickers she finds and Mrs. Pam who always has some adorable craft activity that the kids can't wait to get their hands on. You guys are amazing...all of you.

Friday, May 19, 2006 11:07 PM CDT

Hi everyone,

We have had a pretty typical week...and around here, that means a week filled with lots of activities as well as lots of emotional "ups" and "downs". On the positive side, Mother's Day turned out to be really nice. Both Billy and Molly were well behaved (thanks guys!) and we got to spend some really nice "quality" time together. We had fun at my brother's house and the kids were excited to give me a gift they shopped for with my mom and dad. In addition to their great homemade presents, somehow they convinced my parents to "help them" buy me an iPod. I have to say, though the muffins Billy made me and the photo key chain Molly decorated were more than enough, this iPod is really fun. I'm figuring out how to download music and transfer songs from my favorite CDs. By the time summer rolls around, I should be all set with great playlists for the beach!

Billy and Molly have been busy with their extracurricular activities. Molly's dance recital is in the beginning of June so she has been practicing and getting very excited for it. She is in two numbers. One is an adorable tap dance with a group of little girls around her age. The other is a jazz number with just her friend Morgan, who is a few years older than Molly. Morgan has the dance mastered and while Molly knows the steps, whether she does them correctly seems more dependent on her mood and energy level than on her skills. Let's hope that the day of the recital, she is in the *right* mood to perform! Either way, it's bound to be so cute and even more special because both Molly and Morgan are cancer survivors. To see them together on the stage will be so touching...I know I'll need to bring tissues, not only for me but Morgan's parents too!

Molly has been feeling well. This is the longest we have gone in 2 1/2 years without going to the clinic. (Now I hope I didn't jinx it!) She saw the dermatologist earlier this week and the rash she had around her mouth is gone. Unfortunately though, he also looked at her scar from her port removal surgery and that is getting very thick. We are hoping that it doesn't turn into a keyloid (sp?) She will wear some type of scar reducing bandaid for 24 hours a day for a few months and then the doctor will recheck that. Also, on Tuesday, Molly will be seeing the person who will be making the nighttime leg braces she will need to wear to lengthen her heel cords. That should help her with the toe walking, as long as she tolerates the braces. Please pray that she is able to wear them and that they help her with this issue.

As for Billy, it's been all about baseball. He really loves to play and I think he loves being with his teammates just as much. He has great coaches and the parents I have met have been really lovely. It's nice to know that he'll be in school next year with some of these boys. Tonight, Billy is sleeping over at his school. Each year, his school hosts a slumber party known as "Prime Time". The purpose of this night is to help instill a love of reading and to show the kids that they can have lots of fun during "prime time" *without* being glued to the television. The kids and parents bring books and there are designated "reading periods", where the kids sprawl out together on mats and cushions while they read as they listen to classical music. Then there is entertainment of some sort. Tonight, they had a singer/songwriter and her husband perform lots of fun, silly songs. The kids got to participate and sing along and they loved it. Then they go to their assigned classrooms where they set up their sleeping bags and hear stories and play games. The kids love this night soooo much that Billy and his friends passed up tickets to the Yankee/Met game tonight! (As it turns out, the Yanks lost tonight so for Billy, the decision to miss that game was a good one!) Some of the parents sleep over (well, they really don't get much sleep) and help supervise. That is something Roly always did with Billy so I know he is missing him especially tonight. Last year, our good friend Randy was in town and he joined Billy with his son Matthew so Billy felt less alone. This year, I offered to sleep over but Billy said he could do it on his own and I wanted him to feel secure in himself so I agreed. I went and stayed until it was bedtime and then came home. He was doing fine, though he called a little while ago to say that he was missing me but that he wanted to stick it out. I think he'll get through it just fine though I know this is a little bit of a challenge for him. Luckily for him (but not me), pick up time is 7 AM...I know, isn't that cruel? Actually, it is OK because he has a baseball game at 9:00 AM. I just hope he is rested enough to focus and play!

As for me, this has been a very tough week emotionally. I am engaged in some legal proceedings surrounding Roly's death and I needed to gather papers for the attorneys. I needed to copy everything from birth certificates to our marriage certificate to the autopsy report and death certificate. Somehow, looking at all of those documents triggered so much emotion. Like how can someone's life be reduced to pieces of paper? It all seems so wrong. Not long ago I finished reading the book, "The Year of Magical Thinking" by Joan Didion, which is her memoir of the year following her beloved husband's sudden death. She spoke about how it is so hard to accept that someone you love so deeply and share your life with is really gone, in a matter of seconds. She spoke of how it was hard to pack up his favorite shoes because he might need them when he got home. Of course, she had the intellectual understanding that her husband was not coming back but emotionally, she still expected him to come through the door. Well, the last year has been very much like that in many ways for me. I certainly know in my rational mind that Roly is not coming home but emotionally, well that is a different story. Seeing those papers earlier in the week was like a devastating kick in the gut. I just couldn't believe that his name was on a death certificate. And it hit me...he is *really* not coming home. And I am just so damn sad and angry about that. I hear from so many people all of the time..."Wow, you look great...you're doing so well" and in many ways, that is true. We are *all* doing well, that is, as well as you could do under these circumstances. But we are all still struggling to wrap our minds around this tragedy. I guess for me, I am dealing with my emotions a bit more now because Molly's medical needs are not as frightening or demanding or time-consuming. Now I have time to think and breathe a little...and that is both good and bad. Well, not exactly bad, but difficult because my mind goes to places that are so sad and painful. But thanks to so many people, many of whom I have not even met but through this web page, I know I will get through this and so will the kids. Thank you all for your continued love, support and prayers. It means so much.

Well, I'm off to bed...after all, I need to be at Billy's school bright and early...yes, 7 AM! Wish me luck! And keep your fingers crossed that Billy is able to stay awake and play well at his game. It is so important to him.

Hope you all have a great week.

Love,
Donna

Wednesday, May 17, 2006 6:16 AM CDT

Hi there,

I'll do a "real" update soon....I just wanted to say that the search for a copy of the season finale of Grey's Anatomy is off....one of you amazing readers came through!! I knew one of you guys would do it! Thank you all! Especially, thank you Claire! Now, I can see for myself how things turned out (lol)!

Hope you all have a great day.

Love,
Donna

Monday, May 15, 2006

Hi everyone...

I have a completely off-topic (and kind of silly) request for anyone else who really enjoys the show "Grey's Anatomy" as much as I do...

So of course, tonight was the season finale and I did not watch it in "real time" because I hate sitting through the commercials. But...little did I know that our DVR ran out of room and did not record the last 15 minutes! I know what happened but geez, I would have liked to have watched it for myself (lol). So...for those of you who have it recorded, would one of you be so kind as to make a copy of the last episode and send it to me (VHS, DVD, whatever)?? I'll gladly pay for whatever it costs, shipping, etc...

Well, I thought I'd give it a shot. I'm hoping someone can come through!!!

Thanks so much!! I have a good feeling...

Love,
Donna

Sunday, May 14, 2006 11:53 AM CDT

Hi everyone,

I tried to update last night but something happened with caringbridge and the update got lost. So, here's a 2nd try!

First, I want to wish all the moms who read this page, a very heartfelt, Happy Mother's Day. Like everything else, this day is truly bittersweet for me as I imagine it to be for lots of moms out there. It goes without really saying, that I wish I was celebrating this day not only with my children (the two best gifts Roly ever gave me) but with Roly himself too. It just still seems so wrong that he has died and is not with us in the way that we want him to be. But today, I am reminded that he *does* live on in a very real, tangible way through the children. I can see him in their eyes or the way they smile but most of all, I can see him in their hearts because overall, even though I complain from time to time, they are really compassionate, loving, kind-hearted, giving individuals just like their dad. I am so blessed to be Billy's and Molly's mom and I will always be grateful to my husband for giving me the greatest joy I have known, for giving me these awesome individuals to love, nurture and guide as they become who they want to be.

Both Billy and Molly have been very cute this weekend. When I picked Billy up from school on Friday, he immediately gave me the Mother's Day gift he made me. I asked him if he wanted to wait until today but he said no, the teacher told them to make sure to give these gifts that day. So, as I opened the aqua tissue paper the gift was wrapped in, I found a bunch of mini blueberry and apple muffins. Billy was really proud. He wanted me to eat one and after I did, he asked (ambivalently I might add), if he could have some. I said sure...and well basically, he ate what remained but that was fine with me. We had a good laugh about that. Then he gave me a flower he had drawn on pink construction paper. On each petal, he wrote things about me. This is what he wrote..."takes me places, buys me stuff, listens to me, helps me with my homework, great parent, snuggles with me, great cook, and loves me and cares for me". Well, what more could a mom want than that???

As for Molly, yesterday she asked me this..."Mom, did you ever want a special key chain with a picture of me in it??" "Sure", I told her. "That's the one thing I've been wanting more than *anything* but I just don't have one". She smiled this huge smile and then said, "Well, you're going to get it tomorrow"! How funny she is! She waited until today to actually give it to me and was so very proud of what she made. She also made me a card that says, "I love my mom because she takes me to parties!" Inside there was a coupon I could cash in that said, "I will bake my mom one pumpkin pie". Again, what a riot. Why pumpkin pie...well, I'm not sure. I like it but it's not something that is around here other than Thanksgiving! And I'm sure glad that she has her priorities straight...a mom who parties with her child...well, that is one of the most important parental responsibilities, now isn't it? (LOL)

Today, the kids and I are just relaxing together. There is a 48 hour marathon of The Brady Bunch on one of the Cable stations and well, I have to admit, though we haven't watched 48 hours worth, we have watched a bunch of episodes. They seem to love the show as much as I did growing up. Later on, I actually need to go to the supermarket and then we will be having dinner with my mom and dad and my brother's family at his house. That should be nice.

On this day I just want to say to my mother-in-law, I can only imagine how you are feeling and how difficult a day this is for you. I want you to know that you are a wonderful mother and I think you know what kind of grandmother you are...the best kind. You raised your son to so be loving and good and I am so thankful to you. Because of the kind of mom you were to Roly when he was young, I had a husband who respected me, who cherished me, who loved me unconditionally. Billy and Molly had a dad who gave to them more in the short time he had with them than many fathers give their children in a lifetime. Truly, though I wish with all of my heart that Roly and I could have grown old together, knowing what I know now, I would still have chosen to be with him for too short of a time than not at all. My life is so blessed and enriched because Roly was a part of it...and truly, he will always be a part of my heart, my soul, my mind and my life. He is always with me and you too. My hope for you today is that you can find some comfort in knowing what a wonderful person you raised and that you have some peace in knowing that he lives on in us all and that we are doing OK.

To my own mom, well really, there are no words to do justice to express my love for you. You have been by my side through it all, from the greatest joys to the deepest pains. I could not be the mom I am today to my own children had I not had your for a mother. "Thank you" seems so trite but really, there is not much more than I can say except "thank you" for *everything*. I love you very much and am very blessed and lucky that you are my mother.

I wanted to share this little essay that my girlfriend sent to me. Many of you have probably read this already but it's such a good essay that I thought it is worth repeating...especially today.

This is for the mothers who have sat up all night with sick toddlers in their arms, wiping up puke laced with Oscar Mayer wieners and cherry Kool-Aid saying, "It's okay honey, Mommy's here."

Who have sat in rocking chairs for hours on end soothing crying babies who can't be comforted. This is for all the mothers who show up at work with spit-up in their hair and milk stains on their blouses and diapers in their purse.

For all the mothers who run carpools and make cookies and sew Halloween costumes. And all the mothers who DON'T.

This is for the mothers who gave birth to babies they'll never see. And the mothers who took those babies and gave them homes.

This is for the mothers whose priceless art collections are hanging on their fridge.

For all the mothers who froze their buns on metal bleachers at football , hockey or soccer games instead of watching from the warmth of their cars, so that when their kids asked, "Did you see me, Mom?" they could say, "Of course, I wouldn't have missed it for the world," and mean it.

This is for all the mothers who yell at their kids in the grocery store and swat them in despair when they stomp their feet and scream for ice cream before dinner. And for all the mothers who count to ten instead, but realize how child abuse happens.

This is for all the mothers who sat down with their children and explained all about making babies. And for all the mothers who wanted to, but just couldn't find the words.

This is for all the mothers who go hungry, so their children can eat.

For all the mothers who read "Goodnight, Moon" twice a night for a year. And then read it again. "Just one more time."

This is for all the mothers who taught their children to tie their shoelaces before they started school. And for all the mothers who opted for Velcro instead.

This is for all the mothers who teach their sons to cook and their daughters to sink a jump shot.

This is for every mother whose head turns automatically when a little voice calls "Mom?" in a crowd, even though they know their own offspring are at home -- or even away at college.

This is for all the mothers who sent their kids to school with stomach aches, assuring them they'd be just FINE once they got there, only to get calls from the school nurse an hour later asking them to please pick them up. Right away.

This is for mothers whose children have gone astray, who can't find the words to reach them.

For all the mothers who bite their lips until they bleed when their 14 year olds dye their hair green. (or blue that turns green)

For all the mothers of the victims of recent school shootings, and the mothers of those who did the shooting.

For the mothers of the survivors, and the mothers who sat in front of their TVs in horror, hugging their child who just came home from school, safely.

This is for all the mothers who taught their children to be peaceful, and now pray they come home safely from a war.

This is for all of the mothers of kids with life threatening and chronic illnesses, who would trade places with their child in a second...if they only could. Who worry all of the time. Whose hearts break at each intervention that causes their child to hurt, in the hope of saving their child's life. Who walk around with smiles on their faces and reassurance in their voices, for the sake of their child, when all they really want to do is weep and scream.

This is for all of the mothers who have lost a child. Who despite unbearable, persistent pain and grief, get up each day and continue to live in a way that honors the child they brought into this world. They are the bravest women the world has known.

What makes a good Mother anyway?

Is it patience? Compassion? Broad hips? The ability to nurse a baby, cook dinner, and sew a button on a shirt, all at the same time?

Or is it in her heart? Is it the ache you feel when you watch your son or daughter disappear down the street, walking to school alone for the very first time?

The jolt that takes you from sleep to dread, from bed to crib at 2 A.M. to put your hand on the back of a sleeping baby?

The panic, years later, that comes again at 2 A.M. when you just want to hear their key in the door and know they are safe again in your home?

Or the need to flee from wherever you are and hug your child when you hear news of a fire, a car accident, a child dying?

The emotions of motherhood are universal and so our thoughts are for young mothers stumbling through diaper changes and sleep deprivation...

And mature mothers learning to let go.

For working mothers and stay-at-home mothers.

Single mothers and married mothers..

Mothers with money, mothers without.

This is for you all. For all of us.

Hang in there. In the end we can only do the best we can.

I hope you all enjoy the day.

With love,
Donna

Friday, May 5, 2006 1:16 PM CDT

Hi everyone,

Well, I can honestly say that I am sooooooooooooo happy to see April go and May arrive. Wow...that was one heck of a month. I am looking forward to things settling down some and it being a little less emotionally intense around here.

So....when I last left off, we had celebrated Molly's birthday at the American Girl Place in NYC. Well, the celebrations just kept going...and going...and going...much like the Energizer Bunny!

On Friday, Molly celebrated her birthday with her friends and classmates at The Morgan Center. Her dance teacher, Miss Eileen and her assistant, Miss Jillian came and entertained the kids with all kinds of activities ranging from dance to parachute play to tattoos and so on. Molly had an absolute ball. I think I'll let the pictures tell you about it more than more words! For those of you on dial-up, sorry that it will take forever for this page to load!

Miss Nancy and Molly at "Show and Tell" time

So busy playing

Blowing out the candles with my good friend, Gia

A birthday squeeze from my "boyfriend", Eric

I think he's "dreamy"!

I just love my gifts so much, I can't take my eyes off of them!

After The Morgan Center celebration, we were so happy to welcome Roly's sister Vicky, who flew in from Florida to be with us for the weekend. Molly was absolutely thrilled to share some special time with her aunt and Billy was too. Molly told Vicky that she reminded her of Roly in some things that she said or did and that was kind of touching. Billy snuggled with Aunt Vicky at night and he was able to ask her questions about Roly...what he was like as a little boy, what kinds of things he liked to do, etc. That was very sweet and Vicky shared that it was as nice for her as it was for Billy. She said that by re-telling those stories, she felt like she was almost visiting with her brother again. Thanks Vic for coming to NY and spending some time with us. You know that your visits are always treasured.

On Saturday, it was Roly's birthday. I would be lying if I told you that it was an easy day. It was not. I kept thinking of him all day and of the things we *should have* been doing. I think we were all kind of sad that day. I'm glad though that Roly's mom, dad and sister were able to be here with us on the 29th. I think being together was good for all of us. Billy had his baseball parade in the morning and that was a good distraction. He helped carry his team banner and I think he was proud of that. After the parade, Billy's team had a game. He played catcher for a few innings and he really liked it. His team got clobbered...it was their first loss of the season but the kids all took it in stride.

Helping to carry the team banner in the parade.

Billy's team

Doing a great job as catcher

After the game, Roly's parents and I went to the cemetery. The kids didn't want to go so Vicky stayed home with them. Somehow I am still always shocked when I see Roly's name on the memorial plate at the grave. It is still, a year later, so unbelievable. After the cemetery, no-one wanted to cook so we decided to go out to eat. Molly and Billy asked to go to a local Hibachi restaurant, Tai Show. The chef prepares the food right in front of you and puts on quite a good show while he is cooking. Being there was a good choice because it got us all laughing. Roly and I had eaten there a number of times before with the kids and had he been here, he would have so enjoyed himself. In fact, he would have laughed his head off at the way Molly just kept eating and eating and eating...not only her food, but mine and Vicky's too! We discovered that she really likes scallops, in addition to the filet mignon and shrimp she was eating. The things this kid likes to eat! Billy on the other hand had a double order of fried rice and clear miso soup, that was it. He loves being at the restaurant but only wants to eat those two things. Go figure. At the end of the meal, instead of bringing out cake for Molly's birthday, a big wooden boat filled with cut up fruit was brought to the table, along with some enthusiastic singing of "Happy Birthday", Japanese style! So, this dinner kind of turned into birthday celebration #3 for Molly.

Billy enjoying his fried rice

The fruit boat!!

We had a great time.

Well, then came Sunday...Molly's *REAL* birthday (as if all of the previous celebrations were fake...Ha!) In the morning, Billy actually came in to my room where Molly was sleeping and announced that because it was her birthday, he was going to give his sister a *real* hug and a *real* kiss! Well, you would have thought that she had won the lottery, she was so happy! She thanked him for those "gifts" over and over again. In the afternoon, we packed up and went to "Adventureland" (a small, local amusement park) to celebrate with our cousins and Molly's very close family friends. She couldn't get enough of the rides. She especially LOVED a little log flume ride...that required an adult to go with her. Lucky me, I got to go...and even though it was a little ride, I got really, really wet! Oh well, it was her birthday after all, wasn't it? Again, I think I will let the photos fill you in on how that day went....Again, my apologies to those of you using dial-up!

The swings are fun!

This is my favorite ride!

My mom got real wet too!

My friends and me

Katie, Billy and Matthew waiting on line

Sam, Molly and Emily

Birthday Cake...Yum!

So, needless to say, that was so much fun for everyone. Oh, one other interesting thing that happened on Molly's 5th birthday...she lost her first tooth!! It was loose in the morning and she wouldn't leave it alone. She wiggled it and wiggled it and wiggled it until it came out while waiting on line for the Lady Bug Rollercoaster! So a mouthful of blood and one tooth later, Molly was on the ride and happy to be rid of that annoyance in her mouth. The Tooth Fairy from Florida came and set a bad precedent for the NY Tooth Fairy. That Floridian Tooth Fairy left Molly $5.00 for her first tooth! Well now, it wasn't filled with gold! I hope the little Miss doesn't expect that every time...but somehow, I think she will!

Medically, Molly is doing well. We saw her oncologist on Tuesday for a check up and blood counts. Everything was fine. Her counts are starting to look more typical, though they are still at the low end of "normal", but we'll take anything in that "normal" range! Billy on the other hand, though not sick, is SUFFERING with seasonal allergies. This poor kid has always suffered through the spring but this year it's pretty bad. He's on eye drops twice a day and oral allergy medicine twice a day too. I know he can't wait for this season to pass. It's really kind of sad to watch him sneeze and itch and sniffle and rub his eyes.

On a different note, yesterday was Billy's end of the year bowling party. His team earned a First Place Trophy for the 1st half of the season! Billy also got a "125" patch because his high game was over 125 (without bumpers!). He was soooo proud but I was not there to see it. I was with Molly having her dance pictures taken at the dance studio. It's times like these that I just *hate* being a single parent. Our nanny, Chelsea took Billy and honestly, he seemed fine with it but *I* felt badly. I wish I could be in 2 (or 3 or 4) places at once. When Molly and I got home from the dance pictures, I snapped some photos of Billy with his trophy. He was already in his pjs but it's better than having no pictures, isn't it?

Billy and his First Place Bowling Trophy and awards...Way to go Billy!!!

Morgan and Molly in their jazz outfits.

A preview of Molly in her tap outfit...she'll be dancing to "You're Never Fully Dressed without a Smile"

We have a lot going on this weekend. My cousin Christina is getting married and that is so exciting. I have decided not to go to the wedding because I just don't really feel up to being at a black tie event alone. Even though my cousins will be there, it's not the same as being there with my husband and I have just chosen not to put myself in situations that will make me feel worse when I already still feel so badly to begin with. I feel a little guilty about not going because Christina is a doll and I hate to miss out on her special day but she totally understood and I'll see the new bride and groom one day when they get back from their honeymoon. Instead of the wedding, I am taking the kids to our neighbor's first communion party. That should be fun and then in the afternoon, Billy has a ball game. On Sunday, my friends Susan and Mario are hosting an open house to meet their new daughter. Again, the kids are invited and we can't wait to go and see baby Hillary! So, it's never dull around here!

I have to thank each and every one of you who have been so kind and supportive to us, especially during last month. It was a really hard time but we got through it, in part thanks to all of you. Some of you have left the kindest messages in our guestbook, some have sent private e-mails, some mailed cards and even gifts for the kids, some just prayed silently....I wish I had words to adequately express the gratitude we have for each and every act of kindness. I don't because no words can do justice to what I feel. I am always behind on thank you notes, especially now with Molly's birthday, but please know how treasured each of you are to us. Thank you from the bottom of our hearts.

Talk to you soon.

With love,

Donna

Friday, May 5, 2006 1:16 PM CDT

Friday, April 28, 2006 3:12 PM CDT

Hello everyone,

I am long overdue for an update...it's just been really busy around here over the past few weeks. Thank you so much to everyone who continues to check in on us and to those of you who leave us such wonderful messages in our guestbook. Those entries are really treasured.

Let me start of by telling you all that Miss Molly is back to her old self....full of energy and zip. The IVIG transfusion she received recently really seems to have helped her get over that nasty virus. We are so grateful that IVIG exists!! We got the good news that Molly does *NOT* have mono or Epstein Barr and of course, we were so relieved to hear that. I think that because her immune system is still suppressed from all of the chemo she received, regular, old, ugly viruses just hit her a little harder than most. But we'll take an ugly virus over something more serious any day of the week!

The last few weeks have been kind of difficult emotionally and I feel like I am in overdrive. Actually the entire month of April has been hard around here. As most of you know, the anniversary of Roly's death was March 29th. That was followed by the memorial dinner I had in Roly's honor on April 8th. Then came American Easter and my birthday on the 16th. Greek Easter came on the 23rd. Roly's birthday is tomorrow on the 29th and Molly's is the day after on the 30th. Right before all of that, Molly finished her chemo, had surgery and got her port removed and then got sick as a dog, sending us back to the hospital for a few long daytime visits, complete with transfusions and IV medication. Emotionally, we have all been so up and down. It's a lot to absorb and manage at once. There have been so many reasons to feel hopeful, joyful and grateful and yet without Roly here, it is not easy to really experience those emotions without also feeling so sad and cheated. I am trying desperately to keep up with the demands of our busy lives while trying to cope with my emotions but it has been difficult to balance lately. I find myself very tired and ironically, now when I am most tired, I have really not been sleeping well. So that's kind of frustrating. I am hoping that once May comes and all of those "big events" have passed, things will settle down a bit and I will be able to relax more.

So, when I last wrote, my in-laws had just arrived from Florida and the kids were thrilled. Well, they are still thrilled to be with their grandparents. They have been entertained non-stop and have been showered with tons of attention and affection. Now what could be bad about that? There's only one thing that I can think of...and that is that Grandma and Grandpa have to return to Florida on Monday and that will leave me with two very blue kids who will be still craving their grandparents' constant love and attention. It's always an adjustment when we have to say goodbye to Grandma and Grandpa. Mostly, that's a good thing because it means that even though they live far away, they are never far from any of our hearts. Grandma and Grandap, we love you very much and will miss you until we get together again...in the near future, OK?

Since my last entry, I've been going non-stop. Each night I would say, "I'll update tonight" and then something else would come up and demand my attention like making Molly's birthday CDs. (For those of you who don't know us well....every year we make the kids their own personalized birthday CD comprised of all of their most recent favorite songs. We make a really cute label for them and then makes lots of copies to give out as party favors. Well, that was very much Roly's department given the fact that he was the computer expert. Last year I had help doing them, because there was no way I could learn something new then but now, I am proud to say that I figured it out! OK, it took me waaaayyyyyy longer than it would have taken Roly but I made the CDs, labels, song lists and they all are great. I have a feeling Roly is smiling on me...he would have thought I had done a good job). In addition to all of tasks involved with planning Molly's (multiple) birthday celebration(s), we've had doctor appointments, more physical therapy evaluations, Little League baseball games, bowling league for Billy, Boys Scouts, seeing friends, sharing holidays and the list could go on! Of course, that is all on top of the boring but "needs to be done" daily tasks like paying bills, dragging the garbage out, food shopping, cleaning up, helping with homework...you get it. It's just been so busy lately. I keep thinking "If this is a merry-go-round, I sure would like someone to stop it so I could get off for a little while".

Despite the insanity around here, it has been fun too...most of the time. Some of the highlights include going to a good friend's Sweet 16 Party last Friday night. The kids had a blast dancing the night away with Morgan. Even though Molly spent hours in the clinic that Friday getting IV medication, she insisted on going to the party and the doctor cleared her to go. So she put her party dress on and off she went...directly to the dance floor. Here she is, living it up!

Here's Billy looking handsome

One day, we went to a small local amusement park. Both Billy and Molly are fans of rides so that was great fun for them. Billy brought a friend along, a boy who is on his baseball team and is in the same grade as Billy. He goes to the school Billy will be attending in September. It's great to see Billy make new friends with kids from the neighborhood. On Molly's actual birthday on Sunday, we will be celebrating at this amusement park with our family and close friends. Molly is really looking forward to that.

So, on to some more of our adventures. Last Saturday, we drove to NJ to visit with Roly's cousins. It was our cousin Alexandra's 6th birthday party and that was really great. Despite cold rainy weather, we were able to swim...indoors in a terrific pool. What fun the party was. Billy loved every second of it and Molly loved it too...that is until the chlorine in the pool bothered her eyes so much that she had to get out and have her eyes irrigated. She was *not* at all happy about that. Can this kid catch a break? Back at Alexandra's house though, all of the kids had so much fun playing. One of Alexandra's cousins named Megan looks *a lot* like the actress who plays Megan on a show called "Drake and Josh"...a show on Nickelodeon that my kids really like. Molly was convinced that cousin Megan was *the* Megan from the show. She followed her around like a puppy and asked her questions all night like, "Remember the time Drake did this or that"? It was really adorable.

Megan and Molly

Billy in the Pool

Molly in the Pool

Billy and the birthday girl, his cousin Alexandra

The next day was Greek Easter. We went to my brother's house and celebrated the day with my family and my sister-in-law's family. There must have been at least 40 people there. Roseanne and Van worked really hard to put this whole celebration together and we thank them so much for it. We also thank my mom who cooked up a storm and never really left the kitchen, as usual. The highlight for the kids was the annual Easter egg hunt. Even though it was raining and too wet to do it outside, they still had a ball collecting the eggs that were hidden in the playroom. Uncle Van and Aunt Ro fill their eggs with loose change and the kids get a real kick out of that. I love to see all of the cousins together having so much fun.

Cousins on Greek Easter

Yesterday was a very exciting day for Molly. We went to the American Girl Place in NYC to "kick off" her birthday celebration. Turning 5 is a big deal, you know? And after all she has been through, it is a *really* big deal. Every birthday is treasured and appreciated in a deep way. This is the first she can remember that she has not been on chemo and restricted in a variety of ways. Way to go Molly! Molly and I invited both grandmas, her teacher Miss Nancy and Miss Nancy's daughter, Morgan and our good friend from the Morgan Center, Annie and her mom, MaryEllen. We had such a nice day. The traffic driving in to Manhattan was crazy and we barely made our lunch reservation but we did make it. Molly kept saying, "This is the best birthday ever!' Lunch was *adorable*. The three little girls had their dolls seated next to them with their china tea cups and saucers. Everything is presented so beautifully at the Cafe. We had the birthday celebration package and that came complete with goodie bags and an awesome birthday cake with peppermint ice cream (my personal favorite) served in a little tiny flowerpot. After lunch, we had professional photos of the girls taken with their dolls. *That* was so cute too. Then of course, came....the shopping. Personally, I got Molly a few things that she wanted but my mom, my mother-in-law, Miss Nancy and Miss MaryEllen...well, they got this child so many beautiful things that I was embarrassed by the amount of bags we had to carry. Molly couldn't have been happier though and it was just great to see her...HEALTHY and HAPPY. What more could a parent want?

Miss Molly, our own American Girl

Molly and her friend Annie

Morgan and Molly, true buddies

Blowing out the candles

Both grandmas at the same time...how lucky!

I had so much fun at the American Girl Place

We take so much for granted...a child's ability to run or walk unassisted, to eat without feeling ill, to wear a bow in her hair, to go to a public place without being terrified that she will contract some horrible illness because her immune system is suppressed, to not have to interrupt her day to give awful tasting medicine and more. I am so thankful that we have gotten to this point. I think all of the time of the children I know who are not yet through with treatment, or have relapsed and have even more, harsh treatment, or those who have died and gone ahead of us. So while I am enjoying my daughter's birthday and wholeheartedly celebrating her life, I am also thanking God and *everyone* who has helped us to get here because without them and you, we would not be at this point. And I will ask you all, as you remember my Molly this weekend, please remember all of the sweet kids who continue to battle for their lives. Please pray for them all but especially for Kendall, Hunter, Keegan, Cameronand Baby Donovan. They are all so special as are their beautiful families. May they all recover fully and be able to enjoy life's rewards.

I promise...I will do my best not to take so long to update again. I'm sure I'll have lots of more birthday pictures and news to share.

Have a great weekend.

With much love,
Donna

Update - Tuesday, 4/18/06 11:50 CST

Hi everyone,

Just a quick update to tell you that although Molly is *much* better from the virus she has been fighting, she is still a little "under the weather". Her oncologist called this morning just as I was on my way out to pick up Roly's parents from the airport. He said that Molly's last round of blood tests showed that her immune function is too low and that she would need to be transfused with IVIG or Intravenous Immunoglobulin. The thing with IVIG is that it needs to be infused slowly so as to avoid an adverse reaction. Molly's doctor ordered it to run over 6 hours. Well, that meant that I was not able to pick up my in-laws so thank God for my dad who was able to meet them. Molly and I spent most of the day at the clinic. Even though the transfusion was 6 hours, she needed additional blood work, to be examined by her doctor and to be pre-medicated with benadryl and Tylenol. So, I think we were there for about 8 hours in total. Molly did great with the infusion and I'm so thankful that this product exists. The last time she got it, she was finally able to shake a sinus infection she had been fighting for a while. I am hopeful that this infusion really helps her to fight off this virus. Her blood smear showed that she is neutropenic with an ANC of 270, and that is probably because of the virus she is fighting. The smear also showed a lot of atypical lymphocytes, which is nothing to be too concerned about I am told. Again, their presence is probably owing to whatever virus Molly is fighting. The atypical cells are often seen with mono or Epstein-Barr so Molly's doctor ordered blood work to test for that. She will be seen in the clinic again on Friday so hopefully by then, she will be back to herself.

All day long, Molly complained about being stuck in the hospital and all she wanted to do was go home to see her grandparents. She knew they landed and couldn't wait to be with them. I thought I would share a couple of pictures...she (and Billy) don't look too happy now, do they??

Molly and Grandma

Billy and Grandma

Molly and Papa (I have to snap one of Billy and Papa!)

Hope you are all having a great week.

Love,
Donna

Monday, April 17, 2006 11:37 AM CDT
Hello everyone,

For all of you who celebrated Easter and Passover this week, I hope your holidays were filled with peace and joy. For our family, yesterday was Palm Sunday. We are Eastern (Greek) Orthodox Christians and for us, Easter this year is actually next Sunday on the 23rd of April. In most years, Western Christian churches and Eastern Orthodox churches celebrate Easter on different dates. I'm always asked why this is so here's a little explanation. The formula for when Easter will fall�"The first Sunday after the first full moon on or after the vernal equinox"�is identical for both Western and Orthodox Easters, but the churches base the dates on different calendars: Western churches use the Gregorian calendar, the standard calendar for much of the world, and Orthodox churches use the older, Julian calendar. In addition, the Eastern Orthodox Church also applies the formula so that Easter always falls after Passover, since the Crucifixion and Resurrection of Christ took place after he entered Jerusalem to celebrate Passover. In the Western Church, Easter sometimes precedes Passover by weeks. There's even more to it but that's the main gist of it. Theologically, there are no differences between Western Christians and Eastern Christians with respect to the holiday. Anyway, now you've had a little lesson as to why Greek Easter and American Easter rarely fall on the same Sunday. Now, that's something that you always wanted to know, isn't it? Okay, so you probably didn't really have a burning desire to understand this but if you ever get on "Who Wants to Be a Millionaire" and this question comes up, you'll be so happy that you read this informative journal entry, now won't you? Anyway, in the Greek tradition, we get together on Palm Sunday for dinner that consists of fried fish, fried zucchini and a really garlicky sauce that goes on both called skoltholia. Billy, Molly and I went to my parents' house yesterday and we all enjoyed my mom's great cooking.

In addition to being Palm Sunday and American Easter, yesterday was also my birthday. Though the morning was really tough for me without Roly, the afternoon was better. Some days just highlight his absence more than others. On my birthday, Roly always pampered me....he made one of his famous, elaborate breakfasts of omelettes or pancakes with bacon and fruit arranged decoratively around the plate. When he would serve those breakfasts, I swear they looked better than any meal I ever had at a fancy restaurant! On my birthday, Roly would have occupied the kids and let me sleep in. He knew I was really easy to please with regard to material gifts. A bunch of flowers and a clean house would totally make my day. Instead, I was up early with Billy and Molly, made them breakfast and cleaned the house myself. Our nanny Chelsea (she's usually off on the weekends and being that it was her Easter, I would not even think of asking her to work) was at church and gone for the a good part of the day. Chelsea did leave me a couple of bunches of tulips though...that was awfully thoughtful and kind of her. I guess waking up to the day being like any other day just made me sad not because the day was as it was...but because the *reason* the day was like that is because Roly has died.

When I got to my parents' house, my mood got much better. I was so happy and surprised to see the birthday cake my mom made for me. In fact, it just about brought tears to my eyes! When I was a little girl, my mom made me the most adorable Raggedy Ann birthday cake. It was *SO MUCH* work and I'm sure my mom swore that she would never make that cake again. I would ask for it on my birthday throughout the years but she never actually made it again until I turned 30. Then, just to "bust her chops", I would ask for it again each year thereafter. She told me she would do it again when I turned 40 and that was last year. But, given the fact that Roly had died only two weeks before my 40th, I didn't even want to acknowledge the day let alone think about cake. Well, this year to surprise me, mom made that Raggedy Ann cake. Here is a picture of it...isn't it great?

It means a lot to me that my mom went to so much trouble just to put a smile on my face when she knew that this would not be an easy day for me. Thanks mom...really, I appreciate all of your hard work and thoughtfulness more than you know.

I have to admit, both Billy and Molly were awfully cute yesterday. They did whatever they could to brighten my day and each had their own card for me. Billy actually asked my parents to take him shopping to Target. He knew what he wanted to get me and he did just that. He got me a really beautiful gold bracelet. The links are all hearts and it really is *so special*. I was so touched when he gave it to me. I told Billy that the first piece of "good" jewelry his dad got me happened to be a heart pendant. Funny coincidence, no? Both of my guys seem to like hearts and were thinking along the same lines! In addition to the bracelet, Billy gave me another very special gift. He did the cutest thing. He cut out just about every coupon he could find in the newspaper flyers and wrapped them up for me. It was a running joke that Roly would always spend Sunday mornings cutting coupons that I would almost always forget and rarely use. When Roly died, Billy decided one "job" of his dad's that he could do was cut coupons. So, after opening Billy's second gift, I now have coupons for just about every cleaning product, paper product, frozen food, hot new item and the like. I even have coupons for dog biscuits, though we don't have a dog...yet. Maybe one day! It was great to see how proud Billy was of himself as he gave me those special gifts.

Molly was unfortunately too sick to go shopping with my parents. (She's much better now...but she was feeling awful earlier in the week. I'll fill you all in on that in a minute). Molly gave her order though. She wanted to get me flowers for "inside the house" and flowers for "outside" so my parents picked up a bouquet of roses for inside and some dahlias to plant outside. She was so adorable giving me those gifts...though of course, she "spilled the beans" about them long before today!

The kids and me on my birthday

Onto Molly's health...she is truly doing so much better now but Thursday night, she was complaining of a headache and said she didn't feel well. Within a couple of hours, she was awake from a sound sleep and was crying about her head. It was obvious that she had a fever and of course, I then felt ill worrying about what was going on. She had a temp of 102 and soon after she woke up, she vomited a couple of times. Then she started to cough this "croupy" cough. Actually, the coughing and the vomiting made me feel slightly better in that I thought Molly probably had a virus as opposed to something more serious like a relapse. Only the parent of a kid who had cancer is actually relieved and happy when their kid is sick as a dog but it is *only* a virus! I waited until the morning and then called the hem-onc clinic. Her doctor said to bring her in, which I did and it was obvious by the time I got there, that Molly was dehydrating, as she would not drink at all and her temperature was up to 103. Her oncologist ordered IV fluids, which Molly was not at all happy about, since the IV line had to go into her hand. (Her port was removed a few weeks ago). She really needed those fluids though. Her doctor did a bunch of blood work and examined her. He felt pretty confident that what she had was viral but he put her on Zithromax (an antibiotic) anyway, just in case she has something called "micoplasm", which is a respiratory infection. We spent the day in the clinic while Molly got hydrated and then went home in the evening. Molly still had fever on Saturday but yesterday, she had no fever and seemed a little better. Since it was just us, I decided to take Molly to my parents' house. A change of scenery can be a good thing when you've been cooped up at home for a while.

Earlier in the week, we did some fun things. Billy had his spring concert and that was so terrific.

Here's Billy and his good friend Sarah at the concert.

Miss Molly enjoyed the concert too!

The next day, thanks to our good friends the Rosenbergs, Billy and I went to our first Yankee game of the season! We had field level seats and it was a beautiful day. Johnny Damon hit his first homer as a Yankee and Bernie Williams batted in his 1200 RBI. Now here's one interesting thing that happened while we were at the game. Howard Stern (who is a satellite radio personality...known for being really crass and obnoxious and even vulgar) sent a crew to Yankee stadium to broadcast the game. The guys from the show were seated *directly* behind us. They were actually very nice to Billy and me but their broadcast...well, let's say there were WAY MORE four letter words flying around than I would have liked! I just covered Billy's ears when I could and explained that he was NOT to repeat what he heard at the game. Billy actually thought if was all kind of funny...he knew not to repeat what he heard and he had a ball despite Stern's cronies behind us. Instead of going to the game, Molly opted to stay home and play with Chelsea. The game would have held her attention for a couple of innings and then it would have been torture for us until it was time to go. Chelsea took Molly to her favorite place, Applebee's so Molly was pretty happy that day too.

Here's Billy being interviewed by the crew from Howard Stern's radio show.

Well, this week both kids are off from school but I think it will be kind of busy anyway. My in-laws are coming in from Florida on Tuesday. They want to be here for Molly's birthday which is on the 30th. We have a bunch of invitations for playdates and parties. I'm hoping Molly is all better soon so she can do some of these things. She also has a bunch of evaluations scheduled so that she can get physical therapy in school once she starts in September. I really hope she is up to keeping those appointments. Billy has a couple of little league games and he is really excited about that. Molly has to go back to the clinic tomorrow for a re-check.

Well, that's the news for now. A big hug and thank you to everyone who has been thinking of us and praying for us, especially this time of year. Many thanks for the birthday wishes and cards...that was awfully nice of you and I'm really surprised that a bunch of you remembered that! Please keep Molly in your prayers, that she recovers fully and quickly so she can enjoy her grandparents' visit. Also, please keep all of the sweet kids who are suffering so right now, especially Baby Donovan, Hunter, Keegan and Kendall. All of these kids are dealing with relapses and that is such a hard, tough road to travel.

Hope you all have a great day!

With much love and gratitude,
Donna

Wednesday, April 12, 2006 0:02 AM CDT

Hello everyone,

I'm sorry it took me a while to update again. It has been a long, emotional week.

Let me start off by telling you that the memorial dinner I hosted in Roly's honor was all that I hoped it would be. It was loving, healing and a wonderful tribute to Roly. How I wish this gathering could have taken place to celebrate Roly's 40th birthday instead of to remember him for the amazing human being that he was. Some of our oldest, dearest friends were there along with some more recent, incredible friends who have been by my side since Roly's death. The compassion and genuine love in the room that evening was so special. I am so grateful to everyone who made the effort to be there...thank you all from the bottom of my heart. Each and every one of you mean so much to me. I have to extend a very deep gratitude to an amazing young man, Gabe. Gabe is the son of my friends Suzy and Jerry. I gave him some music and photos of Roly and he compiled the most touching DVD that I was able to share that evening. The DVD is such a gift to me...it really captures the essence of who Roly was...a joyful, gifted, loving, steadfast individual...a son, a brother, a friend, a husband, a father...the love of my life. Gabe, I will treasure your work forever and I know the kids will do the same. Seeing all of the photos was such a great reminder of all the good times we had together and we really had so many. I have been so sad this year that I haven't really focused on all of the wonderful moments. Instead, I have been just trying to survive the day and help the kids survive their days. But seeing that DVD really reminded me of why we are so sad...because we are missing one of the most loving, connected, caring individuals anyone could hope to have as their spouse or parent. We are missing Roly.

At the dinner, different people took turns sharing memories and stories about Roly. It was so nice to hear those accounts and to laugh heartily again about so many funny things that Roly said or did...like the time he tried to barbecue bacon (don't try that anyone, OK?) or how he broke his jaw when he was a teenager (it actually is a funny story). So many people talked about how Roly was such a great friend...there for you any time of day or night through "thick and thin". He was the one you could count on no matter what. Never in a million years did I think that I would out-live Roly and never, ever did I think he would die so young. I figured he would be like his grandfather who lived until his late 90's. But as his best friend Tim said...(and I'm paraphrasing here, OK Tim?)...we can't be angry at God and sorry for ourselves that Roly is gone. Rather, *we* were the lucky ones to have had *him* for the time that we did because he was such a gift to us all, a gift that few of us felt worthy to receive...a gift that enriched our lives in ways that are immeasurable. Although Tim would choke on this analogy, what he said reminded me of what Julia Robert's character said in Steele Magnolias when trying to explain why she would choose to have a child when it would put her own life in jeopardy. She said something like, "I would rather have a few moments of *something wonderful* than a whole lifetime of *nothing special*. Well, I would rather have had a marriage that was too short but *something wonderful* than one that lasted into my golden years but was *nothing special*. Of course, I'm greedy and wish I could have had *something wonderful* for much longer but I'm truly grateful for what I did have and I am forever changed for the better because Roly was in my life and will *always* be in my heart. It's funny but this happened to be on my calendar in March, the month that Roly died. I thought both the picture and the caption were apropos...

Here's what April looks like...

On to other topics...

So, life goes on and as usual, we have been busy. My dearest friend and Molly's godmother came to Long Island from Rochester for the memorial dinner. I was so thrilled to have Lisa here with me, and so was Molly! She came in late Friday evening and got up early on Saturday to go to dance class with Molly and me. It poured that day...a cold, hard rain but that did not dampen our spirits. After dance class we did a little shopping and then went home to spend some time with Billy. That evening was the dinner. On Sunday morning, I drove Lisa back to the airport. What a short trip...she was only here for 36 hours in total! But still, I was so glad that she was here at all. In the afternoon, we drove to Westchester to spend the day with our friends Tim and Karine and some other friends who were in from out of town (Steve and Sue). One of our other dearest friends, Amy met us there so it was a reunion all over again and that was terrific. Here are a couple of pictures from that get together...

Tim and the kids

Playing basketball

On Monday, Billy had his first ball game of the season. He has grown so much as a player already. He did great in the field and even had a couple of solid, good hits. He was so pleased with himself and we were so happy for him. My mom and dad came to watch the game, though my mom ended up watching Molly on the playground equipment more than she got to watch the game. Thanks Mom...that allowed *me* to watch the game! Once again, Billy is on the Orioles. We hope they have a great season! Here's just a couple of pictures of Billy's first game...

Billy at bat

Getting ready to run

Today, Molly went to her friend Annie's house for a very special playdate. She is off from school for the vacation so Annie's mom hosted a big, Easter egg dying, cookie decorating, backyard playing playdate! It was so great to see all of the kids running around and playing. Molly had so much fun. Here's a picture of her hard at work with her eggs...

Dying eggs

The next picture was taken with one of Molly's best buddies...Eric. Eric and Molly were diagnosed on the same exact night with the same illness. They were in the ER together and from that moment on, our families became bonded. They were treated on the same protocol however Eric has an additional *year* of treatment simply because he is a boy. That seems so unfair but for some reason with ALL, boys need to be treated longer. So, we will be celebrating Eric's end of treatment next March. Molly adores Eric and actually calls him her "marrying boy". Sometimes, she even calls him "Dreamy"! What am I going to do with her?? At least if she marries him, I know he comes from a great family and Molly will love her in-laws!

Molly and Eric

As for a little bit of medical news, today I had to take Molly to an orthopedic surgeon. She "toe-walks"...which means simply that she walks up on her toes. It is unclear if all of the vincristine (chemo med) she received bothered her legs or if she would have been a "toe walker" regardless. The doctor thinks Molly should wear braces on her legs to bed each night. The braces are designed to stretch her muscles so that she able to walk more typically. The orthopedic doctor doesn't think she needs physical therapy but her pediatrician thinks she would probably benefit from it. I am going to discuss this with a physical therapist I took Molly to last week. He saw her for an evaluation and thought physical therapy would help her so I'm curious to know his view on the leg braces. It's just one more thing...

Well before I end this already too long entry, I have to say thank you so some incredible people. First, to Stacey Reich and her family. What can I say??? Stacey made me the *most beautiful* little scrapbook of pictures that I have posted on this webpage. It is unbelievable. The time, the care, the creativity...well, there are no words. Stacey, thank you, thank you and thank you again.

Mrs. Pam...you never forget us. We received the treats you just sent and both Billy and Molly were so excited. You have a heart of pure gold...thank you so much for caring so much for my kids. You are one of a kind.

Char from Project Angel Hugs...you never forget us either. You and your teen angels are incredible. You do so much to put smiles on the children's faces. Thank you from the bottom of our hearts.

Katherine and Kathy...you continue to make *THE MOST BEAUTIFUL* cards for Molly!! I have saved them all...they are unbelievable and so are you! Thank you so much.

Well, it's so late now that I am going to say goodnight. Tomorrow morning is Billy's spring concert and I have to do some things to get ready for it. Until I get a chance to update again, know how grateful we are to you all. I hope to update again before Easter but if I don't...Have a very blessed holiday. If you celebrate Passover, may it also be filled with peace and love.

Love,
Donna

Tuesday, April 4, 2006 11:13 PM CDT

Quote of the Day

"When we long for life without difficulties, remind us that oaks grow strong in contrary winds and diamonds are made under pressure."

� Peter Marshall

Hello again,

I just have to start this entry off with thanking again all of you who were there for us this past week...whether in thought, word or deed. Your compassion and support means so much to all of us and truly, we thank you from the bottom of our broken hearts.

I have been waiting to write this new entry because I have been in a "funk" (for lack of a better word) and I have been hoping to "snap out of it", but that just hasn't happened yet. It's an interesting juxtaposition....what goes on in one's head, intellectually and emotionally. We have reached the "one year mark" and have experienced the "first" of just about everything without Roly being here, with the exception of Easter, which occurred before his death since Easter was so early last year. I think that for those who have not suffered such a profound personal loss, there is an assumption that the first year is "the hardest" and that things get better...easier... as time goes on. I think I probably thought that too before Roly's death. I think that maybe subconsciously, I even thought that now. But it is simply not true. A year has passed and I have learned that life does go on. I know that I *can* and *will continue* to carry on, creating the best life I possibly can in the "here and now" for my children and myself. I know that there is still joy to be experienced and wonderful moments to seize but the void is persistent and the pain still exists, in its entirety. I guess the difference is that it is not constant, 24 hours a day, 7 days a week. But it is still there and when it comes, it can knock me to my knees. I miss my husband so very much. My kids miss their dad more than they know how to express. The anniversary of his death has really stirred up some emotion for us all but especially for Billy, who until recently was rather quiet about his dad.

Billy is a child who likes to "not think about things" that cause him pain. He would rather watch television or create some interesting object out of paper cups, straws, q-tips, tape and the like rather than talk about what is on his mind. But since the anniversary, he has been really cognizant of his pain and he has been talking more. Intellectually, I know that it is good...he is sharing and seeking comfort but emotionally, it hurts so much to hear how much he misses Roly. I feel so helpless...nothing I say or do can really soothe him because what he really needs is his dad and that I cannot give him. Recently, he has asked me to lay down again with him at night to ask me questions about Roly. Many of the questions are the same ones he has asked many times before..."What was daddy's favorite flavor of ice cream"? "What TV show did he like the best"? "Did daddy like to read books"? and the like. He wants so desperately to feel connected to his dad. He also recently asked to sleep with his special quilt. It seems to give him some real comfort and peace. Again, I have to thank Lynette from Quilt Creations for making this priceless treasure. As a young widow, it is difficult to manage not only your own pain but the pain of your kids too.

There are signs all around me that life goes on...spring is here and the weather has been much warmer (though this week, it has gotten really chilly again!). The plants are showing signs of new life, it is staying lighter longer, baseball is back, etc. While life proceeds, it's just not the same as it had been before and I am beginning to realize that it never will be. I think in some ways, I am just really *beginning* to accept that this is "for keeps"...Roly is really not coming home again. There is no "getting back to normal", no matter how "normal" we all appear to others. The challenge is on to create a new normal that doesn't get rid of our pain, because honestly, I know it will not leave us. After all, in some ways the pain is directly related to how deeply we love Roly, for if we didn't care so much, we would not hurt so much. Rather, we need to create a "new normal" that embraces the pain, that allows us to co-exist with it, side by side, without it crippling us or distorting our perspectives. It is hard to make friends with something that most of us spend our lives trying to avoid. But I know, if I do not somehow befriend it, it will destroy me and I won't let that happen to me or the children.

So, on with the business of life. On Friday last week, Billy attended his first sleep-over birthday party. I wasn't sure if he could do it, but he did! He didn't go to sleep until 3 AM, but he tells me he was the third one to nod off. My poor friend Linda...she got *no sleep* with all of those rambunctious boys! Saturday, of course Billy was worn out. Molly and I went to dance and then we stayed home and watched some movies. I spent a good portion of the day cleaning the kitchen...exciting right? In the evening, our friends came by and Billy, Molly, Jenna and Melanie had a ball eating way too much popcorn and sweets as they watched the "Kids Choice Awards" on Nickelodeon. I don't know why that was such a big deal, but apparently, it was. They had a ball. Sunday, Billy went to his cousin's soccer game. Katie is a real athlete. She scored 3 out of 4 goals to win the game for her team. Molly and I did a little warehouse shopping (always dangerous...you can spend way too much money in those places in no time). Then we went to our friend's house to celebrate his birthday. Later, we ended up at my mom's for dinner.

Yesterday was interesting. I don't like to alarm anyone (especially my parents and in-laws who read this page!) so I didn't want to say anything that Molly had been complaining about not feeling well all week. She kept saying that her legs hurt and that she had a pain in her side. Then I noticed bruising on her legs. Yesterday, she got one of her world famous, gushing nosebleeds and then complained of a headache. Well, my heart was in my throat and I knew I had to take her to the clinic. Everything was fine (parents...you can stop panicking) but until I actually heard that from the nurse practitioner, I was freaking out inside. All of those things are consistent with relapse. I knew in my head, again...intellectually...that she was OK. But emotionally, forget it. I sobbed in the shower before I took her in. It seems that she has seasonal allergies and her blood work showed it. The headache and nosebleeds are probably related to that. She is probably rubbing her nose and irritating the delicate vessels. The bruising is normal, kid bruising from being so active and running around so much, which is actually a good thing! The pain in her side may have been gas, nothing was wrong with her spleen or liver. Her counts were all fine and she does not need to go back for another month, or until she freaks me out again!

Today, we met friends for lunch at a local ice cream parlor called Krichs in Massepequa. It was sooo good. The owners make all of their own chocolates for Easter and let's say that the full candy dishes I set out earlier have a good dent in them already. I think that is a place we will be visiting again!

This weekend, I am hosting a memorial dinner in Roly's honor at a local favorite restaurant. It is going to be small and intimate but very meaningful to me. Last year, I never got to be with anyone after the funeral because Molly was so ill. I am looking forward to sharing some wonderful memories and stories with our friends. Friends will be traveling to come and that means so much to me. Still others cannot make it but I know they will be with us in their own way. Please say a prayer that everyone arrives safely and that this is healing and good for us all.

Well, I guess that is the news for now. Until next time, I hope you are all happy and doing that which makes you feel fulfilled and at peace.

With love,
Donna

Thursday, March 30, 2006 8:27 AM CST

Good Morning everyone~

I cannot thank you all enough for the outpouring of love and support you have shown me and my family this week. I am moved beyond words. The messages in our guestbook and e-mails I received are to be treasured. So many reached out to us and it is really reassuring and comforting to know that people care so much, even for a family that many have never met in person before. Thank you, really, for caring so deeply.

I think when you live through what we are living through, you have to make some really tough choices. Certainly, without a doubt, life is not fair and bad things *do* happen to good people, in fact to really, really good people. Caringbridge is filled with testimony after testimony with regard to that statement. I think that at some point, most of us are faced with the conscious choice to embrace what we do have and be grateful for the good or become bitter, detached and really self-absorbed in the pain of life. The latter is not really an option for me...it is not what I choose. I don't want to spend the time I do have on this earth feeling sorry for myself and being so angry that I miss life's gifts. After all, it wouldn't change anything really, now would it? Roly would still be dead, Molly would still have battled cancer, I would have battled cancer too and so on. That's not to deny my *feelings* about all that has happened. Yes, I *feel* so angry about my daughter having been through hell and back because cancer invaded her toddler body. I *feel* enraged that my husband and the father to my kids died way too young in a senseless, stupid accident. I *feel* profoundly sad about all that we have lost. I *feel* anxious about the fact that our lives are steering off into a new, unplanned direction. But those are feelings to be felt, experienced and then managed so that they don't turn into *actions* that are destructive to myself or others. That is the task I face and that task includes teaching my children to be grateful, appreciative individuals *in spite* of all they have lost. This will be a life-long task.

So, yesterday for us, was another day in a string of days that requires us to manage our feelings while finding life's goodness. Billy and Molly went to school as they do every Wednesday. Afterwards, we all went to the cemetery and released some balloons with messages. We laid flowers at Roly's grave. Billy, who had not been there since the burial, was relieved to find out that zombies are not real or roaming the cemetery grounds. He was actually fascinated by the engravings on the memorial plates and was in a manner, happy to know that Roly is buried right next to his beloved grandparents, Papy and Linda. Molly helped me fill the brass vase with water, as she likes to do. We said some prayers and then went to Billy's best friend's house for dinner. Billy and his friend went to a hockey game in the evening and it was really good for him to do something (as one of my dear friends said) "life affirming". Molly and I hit Barnes and Noble on the way home and then we had a relaxed rest of the night.

About 5 arrangements of flowers and plants were sent to our home yesterday. I was so touched by everyone's thoughtfulness. The house smells wonderful and the flowers are really so uplifting and comforting. I remember after my own grandfather's death, my grandmother wouldn't allow any flowers in her home because they reminded her of my grandfather's wake. To me, that is so sad. Flowers are so very beautiful and calming. She chose to see this gift from God as a reminder of the profound pain she endured while I consciously choose otherwise. To me, flowers are precious, fleeting gifts to be valued while they are here. They are beautiful metaphors for life. Thank you everyone who sent them. It means a great deal to me.

Well, off to yet another day in a string of days. Today will be filled with mundane paperwork and everyday living tasks but that has its own rewards and comforts too. I want to ask all of you who read this page to please, do me a favor. My dear friend, Katie, who I met through my on-line support group for parents of kids with ALL is facing a difficult time. Her BEAUTIFUL little girl, Hunter, was diagnosed with leukemia around the time Molly was. Both girls had their ports out on the same day. Only for Hunter, the port removal was not the beginning of a more free life. For Hunter, that day was the cruelest and ironic of days because as her port was taken out, a last lumbar puncture was done to make sure everything was ok. Instead of finding out that things were ok, they found out that Hunter had relapsed in her central nervous system. The next day, a new port was put in and Hunter began the rigors of even harsher chemotherapy. Relapse is a tough road. Please, stop by Hunter's page and leave her incredible family a note of love and support. Hunter's mom Katie has been so dear to me throughout this past year. Even with Hunter's relapse, she sent me a really thoughtful basket of tulip bulbs to plant in honor of Roly. She is an inspiration. She has helped me so much in the past year. Now it is my turn and the turn of those willing, to help her and her family. Thank you in advance for the support you will lend.

May you all have a peaceful day.

With love and gratitude,
Donna

Monday, March 27, 2006 11:30 PM CST

an�ni�ver�sa�ry (n-v�rs-r) KEY

NOUN:
pl. an�ni�ver�sa�ries
1. The annually recurring date of a past event, especially one of historical, national, or personal importance: a wedding anniversary; the anniversary of the founding of Rome.
2. A celebration commemorating such a date.

On Wednesday, it will be the one year "anniversary" of the date that Roly died. The day that two uniformed police officers arrived at my front door as I blew my hair dry upstairs while my children played downstairs. The day that I was asked if I "knew" a Rolando Guarton. The day I was questioned if Roly carried a BJ's Wholesale Club Card in his wallet among other things. The day I was told to sit down because a detective from NYC needed to speak with me over the phone. The day I was told my husband was killed, senselessly, horrifically as he traveled to work. The day my world exploded.

I thought nothing could have been worse than hearing Molly had leukemia but this day, the news was worse. Worse because there was no hope of things turning all right in the end. Roly was gone...just like that. Two strangers rang my bell and ended life as we knew it, in an instant. Just the night before, Roly and I had talked about repainting our basement and doing some home improvements. He put all of our Make-A-Wish pictures on a CD so I could take it to the clinic the next day to show our friends there. Just a few hours before, we spoke about what time my first patient was in the evening because Roly needed to know how to schedule his day so he could catch the right train home. And then, all that I knew ended and never before did I feel pain of that magnitude.

Immediately I thought of the kids. I had to get them out of the house...they needed to be someplace safe, someplace else while I tried to absorb what I had been told. To my dear friend Michelle, I will be forever indebted to you for dropping everything and running over here to scoop Billy and Molly away from the hell that had just begun. Even with your own child so sick with cancer, you came to our rescue. Thank you from the bottom of my heart. I love you for all that you did, and continue to do.

As the police spoke with me, Sheila beeped in on the phone from BJ's...did I need anything? And she left her full cart and ran out to be with me. I think she was here in seconds, if that was possible. Sheila, you have been a constant source of support and love...a friend that is so dear that no words can express how I feel towards you. Thank you for being you and holding me up more times than you knew.

My next thoughts were of Roly's parents and sister. How could I tell them? Thank you Joe for being here and making what I hope will have been the most difficult phone call of your life. May you never experience anything even remotely like that day again.

Then I called my dad...he was here in a flash too, as was my mom. Before I knew it, our neighbors and friends were filling our home. Immediately I was surrounded in love and support. The phone began ringing...I don't remember many of the calls though a few stand out. I remember vaguely speaking with Lisa, who was distraught beyond words. She was also on her way from Rochester before I even had to ask. Karine made the calls to our mutual friends. What terrible calls to be made. Thank you Karine for doing that.

The rest is somewhat of a blur. The sequence of events is off to be sure but these things did happen. I knew that I couldn't leave my kids in the dark for long. Billy knew something was very wrong. When he came home, the house was full already. I took him into my office and it was the single most painful moment of my life...to tell him the man that he loved so dearly, his dad, would not be coming home again. The sound that came out of that child was not of this world. His pain I will never, ever forget. I cannot think of it now even without being reduced to tears for my beautiful son. No child should have to bear that pain but I know from attending the bereavement groups, too many do. It is so unfair.

Since it was a Tuesday, Molly was scheduled from chemotherapy. I took her just a couple of hours after hearing the news. I knew that I would have to go to the morgue the next day and then the following days would be filled with funeral arrangements and the like. The people at the hospital were beyond wonderful. The support and love shown to us as Molly received chemo not just then, but every moment before and since cannot be described. We are very fortunate to be in such good care.

On Wednesday, I traveled to NYC with Roly's Uncle Ed and Aunt Sue. We headed to the morgue. When we arrived, we found Roly's dearest friends, Tim and Amy, waiting for us. The coroner was not ready, so we walked to a diner. The wait felt like forever. We eventually met with the coroner, Dr. Coleman. I will never forget her face or name. Eddie offered to do the identification and I gratefully agreed. I did not want to see my husband like that. I'm sure his uncle did not want to see him that way either but being the strong, loving man that he is, he put his feelings aside for me. Again, Ed, I will always be grateful and indebted to you for what you did.

Then we headed to the subway station where Roly was killed. My brother Van had already been there in the morning...videotaping everything since the platform was under construction. He had a level head about him. Thank you so much Van for looking out for us not only in our darkest moments, but every moment since. We all love you, Ro and the kids more than you know. The police station was housed within that subway station. We headed down to meet with the detective on the case. He was a kind man who seemed to genuinely want to help us. We answered questions and got the personal things that they were willing to release. Then Tim and Amy drove me back to Long Island.

In the afternoon, I went to the funeral parlor. Scenes from the HBO show "Six Feet Under" kept popping into my head, though I tried with my might to push those thoughts away. How could I be picking out a casket for my husband? The funeral home is owned by a close family friend and he was so good to us. Thank you Billy. He guided me through everything and promised me that if it was possible to have an open coffin, he would do it. It is probably surprising for most of you to hear that Roly's coffin could certainly have been open. Despite the fact that he was hit by the train, you would never have known it. But I chose to keep it closed because I felt the way he died would evoke too much curiosity and it would not have been respectful to Roly. Also, I didn't want Billy to have that image of his dad forever burned into his mind. But those close family members who wanted to see him, were able to.

People started to arrive in to town for the wake and funeral. In fact, not one of Roly's friends did not come. They came from Maryland, Massachusetts, Texas, Florida, North Carolina, Pennsylvania, New Jersey and more. I am told that more than 1300 people attended Roly's wake. The room was filled with flowers, though we asked for none. It was raining...many people stood in the parking lot on line to get in, never making it in to see me before the visiting hours ended. Roly's company rented a bus for the employees so no-one would have to drive. HE WAS (AND STILL IS) SO LOVED. I hope he knew that. He was a modest man, the one to always be there and offer the shirt off his back to help someone in need. Just a short time before he died, his best friend Tim's mom passed away. He was there with Tim each step of the way. He was the first one in the church to sit with Tim's dad the day of the funeral. That's the kind of man he was...loving, compassionate and good to the core.

On the day of the funeral, it was again rainy and cold. The church was full, and it is a big church. In fact, my friend Christine told me that as the mass before the funeral emptied out, a woman stopped her and asked if a funeral was to happen. She said yes. Then woman asked if it was someone "very important" who died. She told the woman, "Yes, someone very important".

More cars than I can count followed us to the cemetery and then we went to a restaurant to have something to eat. I unfortunately never got to sit with our friends and family members. Molly was having a medical crisis. In fact, both days of the wake, she got such horrific nosebleeds that she had to be rushed to the hospital for transfusions of FFP in order to get the bleeding to stop. Both days of the wake, I barely made it home in time to change and get to the funeral parlor. On the day of Roly's burial, Molly got yet another nosebleed that was out of control. We had to go to the emergency room, and from there, we got admitted for the night. She had bled so much that she not only needed FFP but a transfusion of red cells too. Even in the emergency room, we were surrounded by deep compassion and love. Friends were there holding our hands and by the time we got to the room, one of the best guys around, Joe, showed up with Dunkin' Donuts coffee and muffins. Joe, you have been there before it ever began and every day since. You are loved so much. Thank you for all you and your beautiful family do.

And then it began...trying to find a way to live through the pain. Everything this past year has been so difficult. It is like doing it all again for the first time. Life resembles the life we used to have yet it is substantially, qualitatively different. It is like living in a parallel universe and it is draining on every level, for all of us. We have survived this year because we are very blessed and loved by so many. There are too many to thank here but hopefully, you all know who you are. The caringbridge community has kept my sanity on more days than I can tell you. I have received so many beautiful, compassionate e-mails from people who have been there before me and truly can say, "I know how you feel. Hang on, it will get better". And it is better. But the hole in my heart is deep...the wound is open and I think it will be a wound that will not heal but one that I will have to learn to deal with for the rest of my life.

I want to leave you tonight with lyrics from a song from the musical RENT. Roly and I loved that show and I am drawn to its music, perhaps because so much of it is about loss and pain but also about healing and love.

LOVE HEALS

Like a breath of midnight air
Like a lighthouse
Like a prayer
Like the flicker and the flare the sky reveals

Like a walk along the shore
That you've walked a thousand times before
Like the oceans roar
Love heals

There are those who shield their hearts
Those who quit before they start
Who've frozen up the part of them that feels

In the dark they've lost their sight
Like a ship without a star in the night
But hold on tight
Love heals
Love heals
Love heals
Love heals

Love heals when pain's too much to bear
When you reach out your hand
And only the wind is there

When life's unfair
When things like us are not to be

Love heals when you feel so small
Like a grain of sand
Like nothing at all

When you look out at sea
That's where love will be
That's where you'll find me
You'll find me

So if you fear the storm ahead
As you like awake in bed
And there's no one, no one to stroke your head
And your mind reels, you mind
Your mind reels

If your face is salty wet
If you're drowning in regret
Just don't forget
Don' forget
Don't forget
Don't forget
Don't forget
It's all right
Love heals
Love heals
Love heals
Love heals
Love heals

Thank you for your love and for helping us to heal.

~Donna, Billy and Molly

Thursday, March 23, 2006 10:45 PM CST

Hello everyone,

I'm very happy to tell you all that Molly continues to do really well with regard to recovering from her port-removal surgery. By the way she has been acting, you would not even know that she has a bunch of stitches in her chest! She has been dancing and running and playing. I am really happy that she is doing so well.

Yesterday, she had her first day of "Project Rise" in our school district. "Project Rise" is a kindergarten orientation program that is run primarily by the PTA. One day each week, for 6 consecutive weeks, the children who will be entering kindergarten in the fall are invited to their school to "visit" for 1 1/2 hours. They do projects, get to know the building, meet new friends, play in the gym and more! Molly was *thrilled* to go. As soon as she got out of the car, she squealed, "This is the prettiest school I ever saw!" Now, our school is pretty but I don't know about *the* prettiest school! She separated from me without an ounce of difficulty and in fact offered to be the line leader (no surprise there, eh?) When the first session was over, her "teacher" told me that she is very bright. I don't know about that but apparently, Molly gave the teachers an unsolicited, fairly detailed run down of her medical history up to and including the surgery that just took place to remove her port. She even told them about the IV she found in her hand when she woke from the operation and what it felt like and how she didn't like it! What a character! I will be praying for her real kindergarten teacher...prayers that if she is older, she can retire right after Molly or if she is young, that she already has kids of her own for fear that mine might scare her off from having her own one day! Molly is really looking forward to going to her new school again next Wednesday.

Tomorrow, Molly has an appointment with a pediatric dermatologist. She has this rash on her face that we thought might have been from one of her chemo medications. However, she has been off chemo for a couple of weeks now and the rash seems worse instead of better. In fact, she has a real irritation around her mouth and I am wondering how much the darn binky is aggravating the rash. So, yesterday I decided that enough was enough already with that thing. It is pushing her teeth out, causing a tongue thrust which is impacting Molly's articulation and now it seems to be aggravating (or causing?) a bad rash on her face. I figured that now that her port is out, even if Molly puts her hands in her mouth in lieu of the binky and gets sick, at least I'm not running to the ER. At least now, she'll just get Tylenol and see the doctor in the morning. Well, let me tell you, taking the binky away did NOT go over well in my house yesterday. Even though I told Molly she could have it when she went to sleep at night, she went absolutely *nuts* and threw the tantrum of the century when I told her she couldn't have it in the afternoon. She tried absolutely everything she could think of to get it. She pleaded, she begged, she demanded, she cried, she threatened, she screamed, she hit me, kicked me and even tried to bite me at one point! Then she resorted to trashing her room...she threw all of her stuffed animals all over the place and took a good amount of clothes off the hangers and threw them on the floor. Then she told me she "hated" me and threatened to run away from home. Then she jumped on the bed and told me she wouldn't stop until I gave her the binky. Then she walked around with a pole that holds the curtain from our puppet theater and told me she wouldn't put it down until I gave her what she wanted. Through it all, I was basically calm and reassuring...I ignored what I could, yelled when I had to, looked away and chuckled at some of her rantings, took the stick away from her, offered her a jacket if she was going to run away (after all, it was cold out) and wouldn't let her play or watch TV until she cleaned up her room (which she did, with a little help). This went on for a good hour and a half. By the end of it, she was sobbing and truly sorry and defeated. She was begging me not to go out (which broke my heart) but I had theater tickets to see the Odd Couple on Broadway and my friend was waiting for me in the car. So, I hugged her tight, kissed her tears and left for the show with a knot in my stomach and guilt on my shoulders. Once I was headed to the city, I called home and our nanny told me that Molly was just fine...smiling and watching a DVD in my bed while popcorn popped in the microwave. I swear, every gray hair on my head except a few have Molly's name on them! Today, she was *MUCH* better with regard to the binky. She really didn't ask for it until she was ready to sleep. Hopefully each day it will get a little better and easier for her. I do feel bad taking the binky away but it is hurting her now more than it is helping her. So, we'll struggle through this little "adjustment".

I am going to try to post more pictures from our Make-A-Wish trip soon. It just takes some time to resize them and upload them to a web hosting site. Perhaps in the afternoon tomorrow.

Well for now, that's the news.

Hope you all have a good day today.

Love,
Donna

Monday, March 20, 2006 4:20 EST

Well, there must have been many prayers offered up for Molly this morning because everything went terrificly! She is port-free! She did so well with the anesthesia and woke up without any fuss, though she didn't wake up gradually. No, not my Molly. She sat up with a start, eyes wide open and within a minute or two was complaining about the IV in her hand and asking for pumpkin soup from Au Bon Pain, the coffee shop. Since we've been home, I've done nothing but referee between Billy and her, so I would venture to say that things are back to normal! Hooray for that!

As a funny aside, I want to share my horoscope for today. I never read these things but while I was waiting for Molly to come out of surgery, the paper happened to be next to me and I opened it up and saw the horoscopes. For fun, I read it and this is what it said:

The sun moves into Aries today, so almost immediately you'll see life improve. You'll feel stronger and more in control, and the shift won't just be psychological - you really will have an edge. Today is the first day of spring, when day and night are precisely equal. In astrology, daylight symbolizes individuality and creativity; both are growing in abundance for you. The long winter is behind you, reason enough to rejoice. Better days are due.

Wow...what an interesting horoscope on all days...today!

Take care everyone and thank you so very much for your good wishes, thought and prayers. A very special thanks to Sheila and Danielle for keeping me company today and to my dad, who offered to do the same.

Love,
Donna

Sunday, March 19, 2006 10:19 AM CST
"The strands are all there: to the memory nothing is ever lost". -Eudora Welty

This quote is from a book I have on healing after loss by Martha Whitmore HIckman. After the quote there is a passage that reads:

When we have lost a loved one, we often experience a kind of generalized fear. Our life has been so shaken. Is anything secure? What else could be taken away?

One of the fears may well be, Will we forget? Will the memory of the life we have shared also slip away without the reinforcement of the person's presence, and the shared conversations about past times?

The shock of loss may for a time take away some of the kinder more joyous memories - or make them too painful to remember. But as we begin to feel better - not so weighted with grief - the empty spaces in the patchwork quilt of memory will begin to fill in again. It will be like finding a lost treasure - the more valuable because it slipped from sight for a while.

I have to admit, I worry sometimes about forgetting. Not that I ever could forget Roly per se but the minute details...the little things that made me smile (or frown). All that made Roly, Roly. I worry about that for the kids too, which is why I am working on memory books for them, why I asked for letters about their dad to share with them one day and why I had the special quilts made. As the anniversary of Roly's death approaches, I find myself thinking so much back to where we were one year ago.

One year ago at this time, we were an intact family. We were away in Florida, enjoying every moment of Molly's Make-A-Wish trip to Disneyworld and Universal Studios. We were blessed to be staying at the most amazing resort for "Wish Families" called Give Kids the World. Truly, we were so happy to be there and to be together. I would venture to say that almost every vacation has its "ups and downs" but honestly, this vacation was different. It was just about perfect. We were anxious about going because right before we were scheduled to leave, Molly was a bit under the weather and her counts weren't great. We almost postponed the trip but then decided that we had no guarantee that on the next date we selected, she would be feeling any different so with the doctors' blessings, we went. I thank God everyday that we did. That trip would not have been the same without Roly and instead of it being so joyful, it would have been laden with "bittersweet", as so much seems to be for our family now.

Part of the reason that the trip was so wonderful was that Roly's family was able to join us for a portion of the trip. The first few days, we were by ourselves which was great because we just needed a little time to be together, just our family. But then, Roly's parents, his sister and her family, and his Aunt Judy were able to join us for a few days in the Universal Studios parks. It was awesome to be together. It is ironic that the trip was intended to be about making Molly's wish come true (to meet the Disney Princesses) and yet it ended up being even so much more meaningful as it was the last time that we were all together. I am so grateful that it was such a happy time for all of us. Another wonderful coincidence was that Roly's first cousin, Michael and his wife Laurie and their daughter Julia were vacationing in Disney at the same time we were. Michael and Roly were very close growing up. In fact, Michael was more like a brother to Vicky and Roly than he was a cousin. Over the years, it was harder to visit with one another because we didn't live in the same state but the feeling Roly held in his heart for Michael never wavered. The last time we had seen Michael was at Molly's christening. Once Molly got ill, we didn't travel and we didn't really have guests at our home so it was a long time since we had been together. Roly was really thrilled to be able to see Michael and meet Laurie and Julia on this trip. It meant so much to all of us and again, I am just so grateful that it worked out this way.

So soon after we arrived home, Roly was killed. I was in the middle of sharing our trip on this web page when it happened and I never finished sharing the stories. I would like to share some of that with you now, partly because it was so wonderful and brings me back to the last truly joyous times we spent as a whole family. I also want to share it because the memories of those times are so precious...I don't want to forget any of it, not one moment.

So, when the last time I wrote about our trip, I was telling you that the next day, we were off to meet the Princesses for breakfast at Cinderella's castle. It was *THE* highlight of Molly's trip! It was raining so much that day but that didn't stop us. We brought Molly's beautiful Sleeping Beauty costume and changed her right before we went in to eat. Eating in the castle was really fun. The decor is really cool and the food was great too. Even though Billy didn't want to admit it, he really liked the whole experience. You know, boys who are 8 years old are just too cool to be interested in Disney Princesses (lol). For Molly, she just couldn't believe that she was in the castle and that her idols were there to touch and hug and visit with. When you are at Disney on a "Make-A-"Wish", you are really treated in a most special way. The princesses took time with Molly and were so kind. They brought her so much happiness. Here are some pictures from the breakfast. It was one of those "Magical Disney Moments":

Molly with her favorite Princess, Cinderella

Billy was not as thrilled to be dining with the Princesses as Molly was...but honestly, this picture was Billy "acting" for the camera! He actually had a good time, though he didn't want to admit it!

Billy and Molly with the Fairy Godmother

After the breakfast, we decided that it was too wet and rainy to really enjoy the Magic Kingdom so we decided to hop on over to MGM where there were many indoor things to do. We got drenched doing that but still, it was fun. Here is a picture of Roly and the kids when we arrived at MGM:

Two wet little kids! Still smiling though...

Roly was never far from Molly's side

At MGM, we did all of the things the kids would enjoy. Molly loved Playhouse Disney and the Voyage of the Little Mermaid and Billy liked some of the more exciting attractions like the Aerosmith Rockin' Rollercoaster. Roly took him on that and they had a ball. We ate lunch in the Sci-Fi Restaurant, where you feel like you are at a drive-in movie in the '50's. You sit in booths decorated like old cars and old science fiction movies are shown on a huge screen. "Stars" twinkle on the ceiling. The kids thought this restaurant was a lot of fun. Overall, we had a great day there. Here is a family picture of us from MGM meeting "The Incredibles":

After a wet day at MGM, we decided to go back to Give Kids the World for the evening. Each night at the village, there is something special going on. That night, it was Christmas! The kids got to sit on Santa's lap (and they got gifts too!) and do all kinds of Christmas crafts and activities. One special thing they did that night was to decorate big Christmas cookies with gobs and gobs of icing and lots of candy. Now both Billy and Molly loved that! Here are a couple of pictures from that activity:

Decorating Christmas cookies!!

Mmmm....that frosting was sure tasty!

Well, by the end of that day, we were all exhausted! Doing Disney is not relaxing but it sure is fun!

Until the next update, stay well and enjoy one another. Please keep Molly in your thoughts and prayers, as tomorrow she will have surgery to have her port removed. I'll update tomorrow night to let you all know how the surgery went.

With love,
Donna

Wednesday, March 15, 2006 11:41 PM CST

Hello everyone,

It's kind of late here but I have been so moved by everyone's kindness and all of the notes that have been left for our family recently that I couldn't go to sleep tonight until I said thank you all...again and again for your support, good wishes and compassion. What an incredible community of individuals caringbridge is comprised of!

As usual, our family has been busy. Over the weekend, we attended my cousin Christina's bridal shower in CT. What a terrific shower. It was so nice to see so many people I hadn't seen in quite some time. Molly went with me and she had a ball. While we were there, Billy went to his best buddy's birthday party. Thank goodness for our nanny Chelsea who took him there and helped us out. Later that day, Billy, Molly and I attended an incredible fundraiser at the Garden City Hotel for the "Heather on Earth Music Foundation". This organization is incredible. It funds numerous music therapy programs at various pediatric hospitals. Molly is a child who so loved the music programs offered at our hospital. Sometimes nothing else would put a smile on her face but the amazing music therapist at Schneiders, Glenn, who always managed to perk her up. The woman who created this foundation lost her daughter Heather and despite her profound grief, she created something so wonderful. She is a true inspiration to me and I only hope that when I'm ready, I too will able to turn my pain into something that will help others. By the end of the day, we were all exhausted!

On Sunday, we attended another birthday party. Boy, my kids are really the party animals now, aren't they? Then later, we went out to dinner with our dear friends, the Rosenbergs. We are so blessed to have so many who reach out to us and nurture us. Thank you all. We have the best friends.

Today, Molly went to the clinic and she was cleared for surgery on Monday. She will be having her mediport removed. Another huge step away from disease and towards health. I hate that she has to undergo anesthesia and surgery but I'll be glad when I don't have to be so concerned that a fever could be the result of an infection in her central line. It will be a relief when it is over.

Well, I began doing some per diem work for my school district. Tomorrow, bright and early, I have to do a site visit and observe a child who is up for a reevaluation for special services. It feels good to get back to working a little bit. After I finish the visit, my dad and I are taking the kids to the circus. Roly and I always used to do that and the kids always had a great time. I hope they have fun tomorrow too. Well, since it is late here, I'll say goodnight for now and from the bottom of my heart thank you all again for *everything* that you do.

With love,
Donna

Thursday, March 9, 2006 10:59 PM CST

Hello everyone,

First, let me begin by thanking you all...each and every one of you who cares enough about Molly and our family to check this webpage. We are so grateful to you all for your support, concern and care. The messages you leave us let us know that so many are praying and thinking of us and that really helps us get through the difficult moments. Thank you all for leaving congratulatory messages on Molly finishing her chemo! It's been a long road for our family and we truly hope that as this part of the childhood cancer journey ends, we will emerge not just tired and worn, but closer to one another and more mindful always of that which *really* matters in life. If you have not already left Molly a message in the guestbook, we would love it if you do so because I am going to print it out as a keepsake. As Molly grows up, I want her to know just how many people, near and far, cared so much for her and us. Her are a couple of pictures of Molly getting rid of all remaining chemo medications:

Chemo is nixed in 2006!

I'm so happy that I don't have to take any more dirt medicine!!

Here is a picture of Molly with the *beautiful* flowers sent to her by her Grandma and Grandpa (and Aunt, Uncle and Cousins!) in Florida. They sent them to congratulate Molly for finishing her chemotherapy and boy, was she happy to receive them. Thank you guys so much!!

So on to other things. March has already been a difficult month for our family. So far, it has been a rollercoaster of emotions and I think it will continue on that way. We are filled with the euphoria that Molly has made it to a huge milestone...the completion of her treatment...with for now, minimal negative impacts to her overall well being. She is vibrant, strong, smart and in so many ways, ready to take on the world! When I think of it, I cannot believe all that she has been through yet still, she is such a happy child who lights up our lives. We are so grateful. On the flip side, I am devastated that Roly is not here to witness this all. I know...many say to me that he *is* with us...and I am not disputing that spiritually. But selfishly, I don't want his spiritual presence. I want him here next to me physically; in a "here and now" kind of way. We began this hellish journey together and we should be coming out of it together. It makes me so sad that I can't even communicate what it really feels like not to have Roly here. At the end of the month, Roly will be dead a year. It's still hard to type the word "dead". I want to write "gone" or something like that to smooth it out but the truth...as painful as it is...is that he is dead. I still find myself asking, "How can it be?" "How did this happen"? "Why did this happen"? It sounds insane, but on some level, I still expect him to come home. I find myself thinking things like, "Wait until he sees this..." or "I'll have to explain to him how to work the new heater..." and the like. I think because Molly was still in the midst of so much treatment when Roly died that I was unable to allow it all to truly "sink in". It is beginning to now and it is so deeply painful. A year has gone by...how can that be?

In addition to the profound sadness, I am starting to feel really angry about Roly's death too. Of course, I know that it is normal and expected but it's not a state of being that I like to live in. I just can't help it now. I am mad. Mad that my kids don't have their dad. Mad that my daughter has to weep still many times each week because she misses Roly so much. Mad that she kisses pictures of her dad instead of his cheek. Mad that my son wants to spend so much time in front of the TV not thinking about anything because he doesn't want to hurt anymore. Mad that his grandfather had to take him on his first overnight camping trip with the Boy Scouts instead of his father. Mad that we spend our evenings in bereavement groups and therapy instead of a movie or a park. Mad that there's an empty chair at dinner. Mad that once the kids do fall asleep at night, I am alone with my thoughts, important and not so important. Mad that so many responsibilities fall solely on my shoulders now. Yes, I have tremendous help and support and believe me, I appreciate it all more than you know but honestly, there is no substitute for a parent...for Roly. I am just mad at it all...at the injustice of it. Mad that bad things DO happen to good people and mad that my former belief...life isn't fair...is oh so true. Personally, right now, I just cannot subscribe to the belief that "everything happens for a reason". I can find no reason for lots of occurrences in this world. I don't understand why little kids get cancer...some of them not once but repeatedly. Some after fighting with all of their might, don't survive. I don't know why amazing individuals like Dana Reeve die...someone who brought so much to our understanding of spinal cord injuries, stem cell research and lung cancer. Why her 13 -year-old son has to be left without any parents. Why my husband, a really good guy and an amazing dad, son and friend, had to lose his life in such a meaningless way? My lists of "whys" could go on for a really, really long time. I know that there are no answers to satisfy these questions, at least no satisfactory answers in this life. I am hopeful that some may be revealed in the next one...I hope the Lord has put aside a good chunk of time for me because I sure do have a lot of questions for Him. I don't blame Him at all for all we (or others) have been through but I just want to understand it. I believe that eventually, the anger may be put to some good use...that it will be "fuel" to purposefully create something good out of the horrendous. I guess it's the notion of not going through all of these things in vain. I don't know exactly how it will all unfold just yet but I believe that it will eventually come to be. Let's just call it "a work in progress". So for now, emotionally, we are all stuck on the rollercoaster...going from the thrill of the very high to the helplessness of the very low.

On a different note, we went to Florida at the end of February to visit with Roly's family. Overall, it was a good trip but we didn't get to spend much time with Roly's sister Vicky or her husband Pat. That's because the day after we got there, Pat got admitted into the hospital for high blood pressure and cardiac concerns. He's doing well now...seems to be out of danger and is getting back to himself. We are so happy about that but we sure wish we were able to enjoy his company on the boat instead of from a hospital bed. Despite that crisis, we did a bunch of really fun things on our trip. We went to Fort Meyers Beach one day and for Molly, I think it was the first day in her life that she really went into the salt water and was able to enjoy the whole experience. Both Billy and Molly made friends on the beach and we had a terrific day there. Another day, we drove to Sanibel and Captiva, where the beaches are GORGEOUS. We had dinner at a restaurant called the Mucky Duck, right on the beach and after, went outside to watch the sunset. That's where I took the picture of Molly above. Roly's aunts, uncle and cousins came from Miami to visit with us and that was great too. One night we went to a dinner show and saw "Cats". It was a really good performance but it scared Molly a little bit. Roly's mom got the tickets and at one point, Molly turned to her and said, "Grammy, this is scary! Why couldn't you have just gotten tickets to the Sound of Music?!" That had us all laughing. Another day we went to see a local basketball game where there were lots of fun activities for the kids. So, we were kept busy and we did get to see my niece and nephews a good amount, so that was truly good. Here are a few pictures from the trip. I'll try to post more when I do the next journal entry...I have a bunch!

Playing on the beach

Billy and Molly

Playing Peek-A-Boo

Cousins at sunset on Captiva

The three of us at sunset

The day after we got home was the day Molly had her last big chemo and it's been kind of non-stop since then. Both kids are going to be changing school in September to our local public school. That has been a very difficult decision for me to make, since I love the small private school Billy goes to now. But for many reasons, it seems like the right time to try a change. There has been paperwork to fill out, registration materials to complete and today, Billy visited the school. He was so excited about that visit that he could barely contain himself. The faculty and staff at the school couldn't have been nicer and more welcoming to both Billy and me. The school social worker gave me a personal, detailed tour and was just so kind. They went out of their way to help us feel comfortable and we so appreciate that. I have a good gut feeling that this is the right move for my kids.

Medically, Molly is doing well. We saw the surgeon yesterday and made an appointment to have her port removed on March 20th. When the port is out, I will *really* be relieved. Until then, any fever is treated as if the port could be the source of the infection. That means that any time Molly gets a fever, she needs to go to the hospital for blood cultures and IV antibiotics. If her counts are low, she gets admitted on to the inpatient floor. That has happened to us more times than I can count. But once the port is out, a fever is just a fever. I'll be able to give her tylenol and watch her and bring her to the doctor if need be but it won't be a rush in the middle of the night to the ER...at least I hope not! It has been such a relief to not have to give her medication every day. Up until now, I couldn't even go to sleep before midnight, as Molly had to take her last chemo pill of the day in the evening on an empty stomach. Some kids stop eating at a normal hour but Molly would often be awake and hungry (sometimes from steroids, other times...not) until late. Now, at least I can put my head on the pillow when *I* choose to.

Well, again, I thank you all from the bottom of my heart for checking in and caring so much. I'll leave you with one final image to share...

Yes, I've been conned. The binky is back. And doesn't she look happy about it? Sigh...

Hope you are all well.
With love,
Donna

Sunday, March 5, 2006 11:35 PM

UPDATE:

IT'S DONE!!!! MOLLY HAS TAKEN HER LAST CHEMOTHERAPY PILL!!! NO MORE "DIRT" MEDICINE (AS SHE CALLS IT...BECAUSE IT TASTES LIKE DIRT)!!

More to come soon but tonight, I will go to sleep happy, with tremendous gratitude in my heart and prayers that never again will Molly have to endure chemotherapy and cancer treatment. Sweet dreams to you all!!

Love,
Donna

Thursday, March 2, 2006 11:04 PM CST
Hello everyone,

Where to begin?? Let's start with the REALLY, REALLY GOOD NEWS first! On Tuesday, Molly went to the clinic where she received her monthly dose of IV antibiotics, intrathecal (spinal) methotrexate, a bone marrow test, IV vincristine, steroids and a transfusion of FFP (fresh frozen plasma). Ok, ok...I'm getting to the GOOD NEWS part....drum roll pleeeaase....it was the LAST TIME she will have to endure these medications as part of her treatment protocol. Assuming that Molly remains in remission for the next 5 years (yes, keep praying folks...the beast needs to be kept away for 5 years before Molly will be considered "cured"), she will never have to take these drugs or endure all that she has endured again! On Sunday, she will take her last oral chemo pill! We are thrilled. Two and a half years is a long time to be on chemotherapy consistently. If Molly had been a boy, her protocol would have included an ADDITIONAL year of chemotherapy. For too many that I know, relapses occur and then the whole process can begin again, or an even harsher and truly life-threatening treatment can begin. I am just so grateful that Molly is doing well now and we are all really looking forward to life "off-treatment". We could not have gotten through any of this without all of the prayer, love, kindness, compassion and support that has been shared with us. We are *so blessed* to have *so many* who truly care.

OK, you want some more GOOD NEWS?? Well I have it! Molly's bone marrow was analyzed this week using some pretty sophisticated technology to look for "Minimal Residual Disease" or "MRD". This analysis is so new and sensitive that there is still some debate about what it means if you do find minimal residual disease at the end of treatment. Well, one thing we do know, it's certainly good if you find NO MRD in the marrow and that is just what Molly's marrow showed...nothing! No minimal residual disease...nothing abnormal at all (OK, I'm knocking wood and doing every other superstitious silly thing I can think of so as to not "jinx" our great news)! It doesn't guarantee that she will never relapse but like I said before, it sure doesn't hurt to know that for now...there is nothing indicating the presence of leukemia in her body, even on a genetic level. That is a HUGE relief to me.

Well, I have lots more to say but truthfully, I don't want anything to overshadow what I wrote above so for a few days at least, I'm going to leave this journal entry with "just the good". There will be time for the rest later. I really do promise that I will update again before the week is out with details and more photos from our recent trip to Florida. There is lots of other stuff that I would like to share with you all but for now, for today...it's all good.

Much love to you all,
Donna

Wednesday, February 22, 2006 9:13 PM CST

Hello everyone,

This is just a quick update to tell you all that we are safe and sound and doing well. We are in Florida visiting with Roly's family. Getting out of the cold in NY and entering the Florida warmth is always a treat. We took a ridiculously early flight and had to be up at 4 AM in order to make it but we did it! Now, we are all exhausted. Thankfully we will hit the beach tomorrow and then will be seeing my youngest brother and his wife. He happens to live in the same town as Roly's parents and sister. Both Billy and Molly are thrilled to be with their grandparents and the rest of the family. Roly's extended family will be coming to visit with us here over the weekend too so that should be lots of fun.

As far as the medical front goes, Molly is doing well, thank God. She has only 2 more weeks of chemo to go!! The day after we get back, she is scheduled for her last intrathecal chemotherapy (spinal tap and chemo inserted right into the spinal fluid) along with her last bone marrow exam. That is very exciting but a little scary too. Molly will also take her last round of steroids and IV chemo. She will continue on oral chemo for the week and then she should be done! Hooray! I can't believe we are almost there! Please send good thoughts and prayers our way that things continue to go smoothly. Of course, there is one little annoyance to deal with. After all of this time on chemo, *now* Molly has developed a sensitivity to one of her oral chemo drugs. She has a rash on her face that we hope will go away once she stops taking the medication. At least she doesn't have to take it too much longer.

OK, I will be in touch soon. I can't download my pictures from where I am but when I get back to NY I will have lots to share with you all!

Hope you are all having a good week.

With love,
Donna

Tuesday, February 14, 2006 8:13 AM CST

Hello everyone and Happy Valentine's Day,

Again, it's been way too long since I've updated. Things have been busy, busy and busy around here. Finally, it is settling down a little bit. The renovation we did is finally done...the construction is complete, the walls are painted, the new carpet is in and my new bedroom furniture has arrived. Now comes the task of cleaning the house up and putting things back where they belong. Of course, the paint needs to be touched up, since the walls got a little damaged as the carpet was being "kicked in" and furniture was coming through a narrow hallway but that's nothing compared to all we have been doing. It is good to finally be on the way to some type of order. It's a funny thing...when you are feeling out of control and not yourself on the inside, having your "outside" environment messed up is really unsettling. For me, I am always walking around feeling like something is "not right", a perpetual state of low level anxiety and sadness. It's not the way I used to live nor is it the way I want to continue to live but for now, it is what it is. Having my home feel good to me again is something I have really been looking forward to.

So, it's Valentine's Day...a day to express to those we love, our thoughts and feelings. How frustrating it is for me right now. I hate to even write that, as I don't want to sound like a whiner or one full of self-pity but if I'm going to be honest, I feel sad and frustrated that Roly is not here. Last Valentine's Day we had a stupid fight. Can you believe it? A fight on Valentine's Day. We rarely "fought" though we would discuss lots of topics but this day last year, we had an out and out arguement. I'm kind of embarrassed to admit what it was over. Those of you who are close to me already know this story. Roly brought me home a HUGE bouquet of roses on Valentine's Day. I think there had to be at least 3 dozen red roses in the bunch, maybe more. Instead of just being grateful for the flowers, I asked why he went so "big" with them. I told him I would have been happy with a single rose or a small bouquet of tulips (one of my favorite flowers). I told him this was the day florists ripped everyone off by hiking up the prices. Of course, he was hurt. Why couldn't I just have said thank you? What I was trying to say was that he didn't need to "go big" for me to know how much he loved me but that didn't come out right. And what he was trying to say was, "I love you so much I just wanted to do something extra special for you to put a smile on your face". Of course, we resolved the argument. It was over and done with by night time but I still feel guilty that I didn't just say thank you. If I had only known....but hindsight is always 20/20, isn't it?

Though I haven't written too much about the grieving process lately, I must tell you, it goes on. The pain is still so strong and intense. People tell me it will get better in time. I am beginning to realize that the pain does *not* get better in time, it stays as strong. I guess what gets a little better is my ability to manage it but it certainly exists in its entirety. I recently read Joan Didion's book, "The Year of Magical Thinking". What a very powerful, right on the mark account of grief. The best book I have read to date on the topic. She so eloquently put into words my feelings and I want to share a particularly poignant passage:

Grief turns out to be a place none of us know until we reach it. We anticipate (we know) that someone close to us could die, but we do not look beyond the few days or weeks that immediately follow such an imagined death. We misconstrue the nature of even those few days or weeks. We might expect if the death is sudden to feel shock. We do not expect this shock to be obliterative, dislocating to both body and mind. We might expect that we will be prostrate, inconsolable, crazy with loss. We do not expect to be literally crazy, cool customers who believe that their husband is about to return and need his shoes. In the version of grief we imagine, the model will be "healing". A certain forward movement will prevail. The worst days will be the earliest days. We imagine that the moment to most severely test us will be the funeral, after which this hypothetical healing will take place. When we anticipate the funeral we wonder about failing to "get through it", rise to the occasion, exhibit the "strength" that invariably gets mentioned as the correct response to death. We anticipate needing to steel ourselves for the moment: will I be able to greet people, will I be able to leave the scene, will I be able even to get dressed that day? We have no way of knowing that this will not be the issue. We have no way of knowing that the funeral itself will be anodyne, a kind of narcotic regression in which we are wrapped in the care of others and the gravity and meaning of the occasion Nor can we know ahead of the fact (and here lies the heart of the difference between grief as we imagine it and grief as it is) the unending absence that follows, the void, the very opposite of meaning, the relentless succession of moments during which we will confront the experience of meaninglessness itself.

That passage really speaks to my heart...it captures very much how I feel.

Well on to what has been happening outside of my crazy head...the activities of life that continue on. Well, since I last wrote, we got hit with one heck of a snowstorm. I didn't pay close attention to the snowfall totals but I do know that we got over a foot of snow. The storm hit on Sunday and everything was pretty much shut down that day. School was canceled yesterday but truly, the roads seem clear and fine now. Both Billy and Molly had a great time playing in the deep snow. Yesterday, my dad came and took Billy sledding. He went down the hill for more than 2 hours and just loved every minute of it. Though Molly would have enjoyed it too, I worried that it would be too rough for her so she stayed home with my mom and played games, read books and watched movies. She loves spending time with my mom doing those kinds of things. Here are the kids enjoying the snow:

Will someone turn on the lights?

I love the snow!

Last week, Molly celebrated Valentine's Day at school. There was a great party at
The Morgan Center and Clifford the Big Red Dog came for a visit. Molly *loves* costumed characters so she was in her glory. Also, a very kind man came and did face painting and balloons for the kids. They all got tons of Valentines and way too much candy but a great time was had by all. Here are a couple of pictures from the party:

Look out America's Next Top Model...Here I come!

I love Clifford!

Gotta Dance!

Something else exciting happened. Just yesterday, I received Billy's and Molly's quilts! They are absolutely BEAUTIFUL! The quilts were made with Roly's clothing and the quilter, Lynette from Quilt Creations, scanned photos of the kids onto fabric which has been incorporated into the quilts. The pictures below do not do them justice but I wanted to share them with you. Billy was a little overwhelmed when he first saw his quilt...he looked at it quickly and then went on his way. But there were lots of people in the kitchen when I opened the box and I think he felt too much "on display" and too emotional to look at it with an audience. Before he went to bed though, we looked at it closely together for a long time and I know he really loves it. He asked to be covered with it when he went to sleep and then later got up and told me he wasn't comfortable sleeping with it. I asked why and he told me he was afraid he would somehow ruin it. I assured him that he wouldn't and that made him feel better. Molly loved her quilt too. She kissed the pictures of her and her dad and of course seeing it made her want him all the more. Still, I think this will be something of tremendous comfort to the kids not only now but later in their lives. I cannot thank Lynette enough for all of her hard and detailed work. I am so looking forward to seeing our family wall quilt and the ones I had ordered for Roly's mom and sister too.

Molly's Quilt

A closer look

Another view

Billy's quilt

A closer look

More quilt

Another thing happened last week that I wanted to share. The New York Post finally printed a retraction/correction of the original article it ran after Roly died. Originally, the Post ran an article claiming that Roly had committed suicide. It was a large article and it hit the stands before an autopsy had even been conducted. The Post stole a picture of Roly and Molly off of this webpage and printed it in the paper. It was so painful to us all because we knew that what they printed was wrong. Heck, even if that had been the case, how do you further hurt a family that is hurting so much?? Well, after investigating and doing the autopsy, the police and medical examiner ruled Roly's death an out and out accident. I know this to be the case as well and have been fighting with the Post through an attorney to have them correct the article. They gave us three sentences and this is what it said:

Headline: "Subway death was accident".
Story: A man killed last year when he was stuck by a train at the 59th Street/Columbus Circle subway station has been ruled an accident, officials said. Rolando Guarton, 39, was killed last May 19 at 9:15 am when he was hit by a northbound C train. Both the NYPD and the Medical Examiner's Office deemed the death "accidental."

They didn't even get the date right...Roly died on March 29th, one month exactly before his 40th birthday.

I cannot believe after all of the fighting that they finally printed something...it's not what I wanted nor in the form I wanted but at least it's something in print. At least if the kids ever look up or find the first article, I have something to show them that is truthful. This is one piece that I just need to put aside for now. I do want to thank my attorney for all of her hard work to get this accomplished. I know that she stayed on it, as did another friend of mine and I am very grateful to you both.

Well, I want to wish you all from the bottom of my heart a very Happy Valentine's Day. We are all so grateful for your love and support. I feel badly that I have been unable to get my act together enough to write individual "thank you's" to everyone who deserves them but there have not been enough hours in the day lately to accomplish what I would like to do. Please know that we are *always* grateful for anything and everything you do. A special thank you to my best friend Lisa who sent me a beautiful bouquet of flowers (roses and all!) today. You may be my friend by blood but you are my sister in my heart, now and always. I love you very much and couldn't get through everything without your support and care. Thank you also to Mrs. Pam, who never forgets us and to Kathy and Katherine who continue to make the most special and beautiful cards for Molly each week. Project Angel Hugs, Stacey Reich and so many others...what can I say? Know that we so appreciate all that you do. And to everyone who takes the time to read these writings...thank you. Thank you for your interest, your care and the time you take to sign our guestbook to let us know that you are thinking of us. Caringbridge is a community unlike any other I have experienced.

With much love,
Donna

Saturday, February 4, 2006 8:39 PM CST

Hello everyone,

Once again, we sure have had a busy week! I have to say, Molly thoroughly enjoyed the recent manicure and pedicure she received. Last Saturday after dance class, Molly and I had a true "Girl's Day Out". We joined our friends, "Miss Nancy", Molly's teacher from The Morgan Center and her daughter, Morgan for lunch in the cutest restaurant called "Milk and Sugar", where the style is Victorian and the food is terrific. We did a little shopping on Main Street in Bay Shore and bought a few frivolous items like chocolate and M&M covered pretzels and Valentine's Day lip gloss. Afterwards, we headed to the nail salon where we all had manicures and pedicures. It was relaxing and lots of fun. Molly was thrilled with the designs she had painted on her nails and she loved the little back massage she got while her nails dried. The only problem is, now she wants to do this all of the time! Here are a few pictures of the Princess being pampered:

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I love getting my toes done!

How do my nails look?

What about my toes?

That special Saturday was enjoyed not only by Molly and me but by Billy too. Of course, he would have no part of a "Girl's Day Out" but he sure enjoyed the time he spent with "Miss Nancy's" husband, Rod and their son Trevor. While the girls were out getting all dolled up, Rod, Trevor and Billy headed off to Laser Tag, a real "manly" activity! They played two games of tag and then headed to the arcade for video games and pizza. When they got home, the boys played more video games and watched cartoons. Now how's that for a dream day for a little boy? Billy had a *wonderful* time and we all can't thank our friends, the Zuchs enough for their kindness not only on that special Saturday but all of the time. You guys are the best.

Last weekend was also Billy's Pinewood Derby for Boy Scouts. The big night finally arrived and boy, was it fun. Lots of ceremonial activities occurred before the actual races, all of it building up to a frenzied excitement by the time the races started. Molly was Billy's biggest fan that evening. In fact, just before his car started down the track, she turned to a scout who was unknown to her and standing innocently behind her. She grabbed the poor boy by the scarf around his neck, drew him in close to her and said, "Listen to me...my Billy's car is racing next and when it goes, you say 'Go Billy, Go!', got it?" The poor kid! He didn't know what to say! After we stopped laughing, we had to explain to her that while it's great to cheer for your brother, intimidation tactics are not usually the way to go to rally additional support! Billy, though mortified by his sister's behavior, had a really fun time that night. He was thrilled to find out that his car tied for 2nd place in his division! He was so proud, especially given the fact that it was his first year participating. We all want to send a big thank you to Randy for helping Billy to create such a terrific, winning car! Here are a couple of pictures from that special event:

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All ready for the race!

What cool looking cars!

On your mark, get set.....

The rest of the week was busy (as usual). The painters were here most days painting and everything at home has been upside down. Though the construction is done, lots of the walls cracked in the demolition of our bathrooms and that meant spackle and paint was needed in more areas than I would have liked. In fact, a good portion of the interior of the house is being painted. So of course, the pictures are off the walls, things are off shelves, the furniture is out of place and the whole house is basically a mess. However, the painters tell me that they will be done by mid-week next week. I sure hope so because the new carpet is coming on Friday and my new bedroom furniture is being delivered on Saturday. Whew! It sure is a lot to deal with. I keep telling myself it will be worth it when it is done.

Molly was seen at the clinic on Tuesday. Again, her counts were good (hooray!) and she was able to get her chemo. This week, Molly received vincristine, IV prophylactic antibiotics, dexamethasone (steroids), oral methotrexate and an oral medication called 6MP. This medication regime occurs once each month and it would be fair to say that it's not my favorite week of the month. This time around, the steroids really have affected Molly. She is eating so much and her mood has been very, very variable. Sometimes she has been sweet and loving and then in an instant, she is crying or raging uncontrollably. I know that she can't help any of this and I feel so for her. Today is the last day that she has to take the steroids so within a few days, she should be somewhat back to herself. I cannot wait. Neither can she I am sure.

Molly should be completing her treatment in about 4 more weeks. However, she has missed a decent amount of chemo during her course of treatment due to low counts and illnesses. I worry that the missed chemo could impact on her overall outcome. To quell my anxiety, I am going to go to NYC to meet with the head of the CCG (the research group which generates many of the treatment protocols our kids are on). I have sought his opinion in the past and am curious as to what his thoughts are about Molly's missed chemo and her end of treatment date. I'll let you all know what his thoughts are as soon as I know.

As for this weekend, Molly went to dance today and after, Billy, Molly and I went to his Boy Scout Blue and Gold Dinner. There, Billy and his pact got various badges and awards. There was a "mad science" show, where a couple of people came and did some really neat science experiments with dry ice, bubbles and things like that. All of the kids thought it was great. Molly and Billy got called up to assist with the same experiment and they were not even sitting near each other when they got selected. They were both very funny. Molly had the adults laughing hysterically just with her mannerisms and comments. When the demonstration was over and I told the kids to look at me for a picture, Molly threw her head back and gave me a real pose. That had everyone in stitches.

Tomorrow is Superbowl Sunday. We were invited to 2 parties and intend to go to both, at least for a little while. Since Chelsea (our nanny) is from Seattle, I guess we should be routing for them but being an East coast girl, I think the Steelers are going to have my cheers.

On a more serious note, another child from Molly's school relapsed this past week. Kendall has neuroblastoma (the same cancer as "Alex" from "Alex's Lemonade Stand") and the news of a relapse has been devastating to all of us. Please, I am asking all of you who pray, please keep Kendall and his family in your prayers. Please ask God to guide his family to that which is best for him and to help cure him of this awful disease. For those of you who are so inclined, could you leave Kendall's mom, Aimee a note of support and encouragement in their guestbook? You would be surprised to know how much a few words of encouragement can help when you're having a rough time. I'm sure Aimee and her family would appreciate it.

Love,
Donna

Thursday, January 26, 2006 11:09 PM CST

Well, I guess the caption under Molly's home page picture just about says it all. While she was all "gung ho" to give up that binky initially, she is sure struggling to "stick with the program". I keep telling her to just admit that she's powerless over the binky...after all, it's the first step in a much needed 12 step recovery program, isn't it? But alas, she is just not willing to do that yet! Truth be told, she has been pretty good with not having it during the day. Only once or twice did I catch her sneaking up to her room to get a few quick sucks off the binky she had stashed under the covers of her bed. Now that *I* have the hidden stash, she seems to be coming through the withdrawal and is doing a little better. Cold turkey sure is hard sometimes, isn't it?

Other than the binky drama, Molly seems to be doing well overall. We had her clinic appointment on Tuesday and all of her counts were good. It seems that the "Binky Fairy" got wind of Molly's efforts and brought her a gift to the clinic...none other than a talking Disney Princess mirror! Now, does it get any better than that?! I think not! Molly was so pleased with her gift...we want to thank that "Binky Fairy" very much for thinking of Molly!!

Molly has been going to school at the Morgan Center three times each week and just loves that. I am thinking of sending her to day camp for a few hours a couple of times each week during the summer. She is such a social child that I think she would LOVE to be with other kids more. By then, her port should be out and hopefully, her immune system will be on the road to recovery. Finding the "right" camp that will meet her needs is something I am going to have to spend a little time investigating.

As for the recent activities, over the weekend, Molly and I went to see the Disney Princesses on Ice while Billy attended a "pot luck" dinner at his school with my parents to raise money for children impacted by Hurricane Katrina. Molly had such a great time at the ice show while Billy thoroughly enjoyed his event. The ice show for Molly was a dream come true...ALL of the Disney Princesses on ice...and then, a whole second act that was devoted to none other than Cinderella. She must have said "thank you" spontaneously to me at least a dozen times complete with hugs and kisses. She went dressed in her Sleeping Beauty costume while her cousin Savannah went dressed as Cinderella. Her other cousin Jesse went as the most handsome prince of all. It was so nice to spend the evening with my first cousin, Chrissy and her kids. Thanks Chrissy for getting the tickets and for all that you have done to "be there" for each of us. We love you guys.

So, even though we had a wonderful time at the ice show, of course, we couldn't get through the show without reminders that Molly has leukemia and that Roly died. Right there in the middle of the show, Molly got a nosebleed. Darn those things! It wasn't the worst but it was there nonetheless so for a while, Molly had to watch the skaters as I held tissues to her nose while I pinched it to try to get the bleeding to stop. It took a little while but it did eventually stop bleeding. That was "Reminder Number 1". "Reminder Number 2" came as we were watching the "Beauty and the Beast" segment. Everything was going along fine until the point when Gaston "slays" the Beast. As the Beast lay there dying, Molly turns to me in an alarmed and almost panicked manner and says, "My dad died! Why did my dad die? I want my daddy to come back!" and then came the tears. It caught me so off guard because just a few minutes earlier she was laughing her head off and cheering. And so it goes not only for Molly but for all of us. We seem to be going along fine, maybe even better than fine and then BOOM!! Right out of "nowhere" we are faced with a sight or sound or smell that brings the pain back in full force. You just never know when or where or how grief will rear its ugly head and I have no satisfying answers for myself or the kids. It's such a source of frustration and pain.

Some of you have asked how the our little construction project is going. Well, the construction is done (hooray!) Our bathrooms look terrific and my bedroom is getting its own "extreme makeover". Just today, the painter came and I can honestly say that I like the new color of my room (kind of like a warm, somewhat rich latte color). Once the painting is all done, new carpeting will go down and finally the new furniture will be delivered. It's been hard to let go of so many things...the most recent being our bedroom furniture but I am looking forward to finally going into my bedroom without being hit with Roly's absence. It's hard to explain but until I started doing the room over, every time I went in to go to sleep I would find myself focused on *his* dresser, *his* nightstand, *his* side of the bed and it was such a harsh reminder that I would not be sleeping next to *him* . I truly had no particular attachment to the furniture other than the fact that Roly and I shared it. We bought it at a tag sale right before we were married and always wanted to get around to replacing it with a new set of our choosing. It makes me sad that Roly and I didn't get to do that. Somehow the new bedroom is a symbolic representation to me of a new chapter in my life. As much as I don't want to go on without Roly by my side, I know that I must and I have to find a way to live again and not just exist for the sake of the kids. I have a feeling that will take quite some time but I'm working on it.

I wanted to share something very important to me with all of you, especially those of you who know me and the kids and those of you who loved Roly. I had asked a while back for letters to my kids about Roly...anything that might help them to know what kind of person their dad was...anything that would help them as they grow to feel connected to him. Truly, I don't think there is anything more important to me with regard to helping my kids heal and adjust than to help them always maintain a closeness and a bond to their dad. These precious letters will do just that. They are an invaluable gift to us all. They don't have to be worthy of a Nobel prize...they don't have to be long...they just have to be from your hearts. To those of you who have sent me letters, thank you a thousand times over. To those of you thinking of writing something, thank you in advance and please, don't agonize over this...just send something. I know it will be so treasured by us all.

Roly's dear friend Jeanne sent this to me today and she said it would be OK to share it. I was so deeply touched by what she wrote about Roly...she captured his essence and I hope it helps some of you who didn't have the privilege of knowing him, get a better sense of who he was. I hope it inspires those of you who haven't written yet, to please send us something.

Here's Jeanne's letter:

Dear Billy and Molly,

I find myself sitting on a long airplane ride, thinking about you and your family. I wonder how you are and how this could possibly have happened. I keep trying to understand it but I don't have any answers. Sometimes we lose people we love so much that we think the world must stop, that time must stand still. Life can't possibly go on without them. I feel this way too because I lost my father this year. But life does go on and the most important thing we can do is to keep Roly in our memory and try to be the kind of person he was, because he was a kind, sincere, fun, loving, and loyal person. He was one of a kind your Dad.

Roly and I worked together at a previous job. I got on the train in Seaford and him in Bellmore. Sometimes we would see each other in the morning and chat on the way into New York City, but he was usually at work much earlier than I. I tend to be late and he was usually on time. We often traveled home together on the 5:40 PM train home. Roly would tell everyone in the office that he liked taking the train with me because I always gave him funny stories to tell at work the next day to get everyone laughing. I have to admit that it was true. I was either telling him about the latest drama in my life or getting in an argument with the guy who tried to steal my regular seat on the train. But he always listened and somehow he had the ability to turn almost any situation into a funny one. It is really a gift to be able to do that.

I remember coming home from work several weeks after my father�s funeral and there was a message on the answering machine from Roly. He was shocked to hear that my father had died and was upset that he hadn't known. He said how sorry he was and that he would have been there for me had he known. The fact is I have no doubt that he would have been there. That was just the type of guy he was. He left this message right before you left on your trip to Disney World. I never had a chance to talk to him again.

This is just one of many memories I have of your father, but the most important thing I remember is how excited he was to have children and how much he loved being a father to you both. Billy, he got such a kick out of you and was so proud of the boy you turned out to be. Molly, the baby girl that stole his heart and showed the kind of courage that would amaze any parent. He loved you both so much.

I remember his door at work, every inch of it covered with pictures of you both. I remember him telling me when I was pregnant that having children was the best feeling in the world and he knew I would just love being a Mom. He was right!

Over the years, I got to know your Dad and this is it in a nutshell. He was the person that would hail you a taxi, hold open a door for you, give up his seat on the train for you, pick up your bag when you tripped walking to work, tell you a joke when you didn't feel like laughing, offer you a ride if it was raining, and call you to say how sorry he was when he heard that your Dad died. I regret that I never had a chance to talk to him again. To tell him how sorry I am that I didn't call to tell him my sad news and to give him a chance to be there.

I have a 6 month old daughter. I now understand how much your Dad loved you in a way that I could not fully understand until I had a child of my own. It is a love so strong that even death cannot break its bond. Your fathers love is so strong that it will be with you for the rest of your life. He will be with you on your graduation day, on your wedding day, and when you have your own children someday. His love will stay in your heart for the rest of your life.

Love,
Jeanne

Well, I guess that about says it all for now.

With much love,

Donna

Tuesday, January 17, 2006 4:30 PM CST

Hi everyone,

We just got home a few minutes ago from the clinic. Thankfully, everything was fine. Molly's ANC was in the high 800's, which is within the desired range. She will continue on her regular dose of oral chemo this week. Also thankfully, she did not require another IVIG transfusion. Her IGG levels (immune function) have been dropping but are not low enough yet to get transfused. They will be rechecked next week.

We had an exciting event happen in the Guarton household last week. Molly decided that it was time to give up her binky! Those of you who know her *know* how attached she is to her binky so you can imagine my shock when she came up the stairs one morning and just spit the binky into the garbage! When I asked why, she told me that she was done with it. She said that Billy called her a baby and she is NOT a baby so she decided to give up the binky! Heck, if I knew all I had to do was call her names to give the thing up, I would have done it a long time ago! Way to go Billy!

Now, saying goodbye to the binky was not actually that simple. She had to ceremoniously suck each binky before she spit it out into the garbage. Then, Molly decided that she wanted a "bye bye binky" party...that night to celebrate the event. She insisted on baking and decorating a cake with Chelsea. She sent me to the party store to get paper goods, hats and yes, goodie bags. (Yes, I am wrapped around her little finger...I did it!) Then she invited her "guests" (my mom and dad and Chelsea's friend Becky). We ate tacos and then, out came the cake. We sang..."Bye, bye binky...Bye, bye binky...Bye, bye Binky....We hate to see you go!" Then, Molly blew out her candles that spelled out "CONGRATULATIONS" and she opened the little gift I got her. It was fun. Here she is all excited about blowing out the candles:

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Here's Billy having a great time at her party:

And then...came bedtime! Do you think that all of that hoopla prevented "La Princessa" from asking for....YES....THE BINKY?!!! NOOOOOOO! So the asking turned to demanding which turned to pleading and then begging and finally, real tears. Yes, I am an ineffective parent and caved...I gave her the binky (of course I saved a few...I know my daughter!) But only for sleeping at bedtime. So far, Molly has stuck to that agreement. She goes all day without it and at bedtime, I let her have it. Even that is a HUGE accomplishment for Molly. She used to walk around with it in her mouth all of the time.

A long while ago, I told Molly when she gave up the binky, I would take her to Build A Bear (since she LOVES it there). Well, she remembered. Yes, I should have told her that when she gave it up at night I would take her but instead I just said, "OK" and so we went. This is where being the parent of a child with cancer gets tricky. If Molly had not been sick, well I probably would have made her wait. But I can't help but think of all she has been through. I can't really shake the fear of relapse either and so I find myself saying things to myself like, "What the heck...let her enjoy this now while she is doing well and able to enjoy it. You never know what tomorrow can bring". I see way too much at our clinic to know that everything can change in an instant. Believe me, I don't spoil her rotten but she is more indulged than she would have been had things been different. But then again, she has been through so much more than most kids her age and so I can't help but feel that if something like a trip to Build A Bear will make her happy, then why not.

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Build a Bear is always fun!

I've named this bear "Lovey" because I love her so much!

As for other happenings, we had the pleasure of going to an Islander hockey game this week. I say "the pleasure" because the Islanders got creamed by Vancouver and we are Ranger fans! We went with friends from the Morgan Center and it was really a fun night, despite torrential rain that soaked us through. It was Molly's first game and she really had a ball. She cheered the whole night long!

The next morning, we woke to snow and bitter cold. The kids wanted to go out to play, which they did but it was really too cold to stay out for long. Billy came in first and Molly followed later. She loved making snow angels and having a "snow fight" as she calls it. We walked around the corner to our friends' home and the kids played with their friends, Melissa and Brianna. Melissa's mom is a teacher at Molly's school and Molly adores her. We ended up spending a good part of the day with our friends and that was terrific.

Then next day, Billy's friends from school came over for a playdate. He was so happy about that. Molly was too. She thinks she is always part of the action.

Tonight I am going out to dinner with my friend Sheila to celebrate her birthday, which was last week. She is a dear friend and Molly's main directed blood donor. I am really looking forward to getting out a little.

As for my New Year's resolutions, things are starting to come together a little bit. I am getting more organized and routined and that is good. Last year I read a book by a woman known as the "Fly Lady". She helps people who are living in CHAOS (Can't Have Anyone Over Syndrome) find their way back to peace and organization. Truthfully, my home has never really been in that state (well...maybe when I'm decorating for the holidays or while we've been under construction...lol) but a lot of her ideas and methods make good sense and help to create good habits. I started to read her book again (called "Sink Reflections") and it has motivated me to really get rid of any excess stuff that clutters the house and doesn't bring us joy. So, my big goal is by the time I go back to work full-time in September, my house will be in great shape, repairs and updates will be done, drawers and closets will be cleaned out, etc. This way, when I am home with the kids, I am spending quality time with them instead doing chores and extra housework.

Well, I guess that is the news for now. I wanted to mention that a mom named Robyn Raphael, the Northern California St. Baldrick's organizer, was featured on the Today show as a nominee to become the "Godmother" of the newest and largest Royal Caribbean Cruise Ship. Robyn, who was among 6000 women nominated, became one of the final three contestants based upon her tireless dedication to childhood cancer research. After losing her son, Keaton, 8 years ago to childhood cancer, she established the Keaton Raphael Memorial, and has spent countless hours raising money for the cause. The winner will be determined based on votes cast on the Today show website. You can cast your vote prior to 9:00 PM EST, Friday, January 20, 2006. The winner will be announced during NBC�s Olympic coverage in February. Robyn's nomination has already introduced millions of people to the cause of childhood cancer. However, if she is chosen as the winner, the opportunity for sharing the need for greater funding for childhood cancer research will be heard by millions more. Please vote for her today!

Hope you are all having a great week.

Love,
Donna

PS: I want to thank "Angels on Earth" from the bottom of my heart for all of the beautiful and fun cards you sent my kids this week! Billy and Molly both LOVED these cards so much! Thank you for your kindness and generosity!

Wednesday, January 11, 2006 6:22 AM CST

Hello everyone,

Each week on Tuesday, Molly is seen at our clinic. She has her blood counts done and is typically seen by her doctor for the "once over". Sometimes she receives chemo, blood products or preventative IV antibiotics. She is so comfortable at the clinic...known to everyone and really loved by all too. We are very lucky to be treated in a place that cares so much for its kids. Because of the excellent care we receive at our hospital, we put up with ridiculously long waits and over-crowded conditions. It is worth it to us.

Yesterday, Molly was seen and all was well. Her counts were up...as expected since she just completed a round of dexamethasone, a steroid that when given in big enough doses, acts to kill cancer cells. Steroids tend to raise one's white blood cell count. Also as expected, Molly's hemoglobin was down a bit due to the many nosebleeds she has had this week. Her physical exam was fine...she is growing so much and developing beautifully. Today, I spoke to Molly's oncologist about the fact that soon, she will complete her chemotherapy protocol. According to our calculations, Molly's last spinal tap and intrathecal chemotherapy will be on February 28th. Her last day to take oral chemotherapy is scheduled for March 7th. I cannot believe that the end of this part of Molly's journey is so close. It is both uplifting and terrifying at the same time.

I think that parents of kids with cancer convince themselves that as long as their kids are on treatment, the cancer is being "kept away". It's like the chemo protocol is a huge, strong army comprised of many components that just fight, fight and fight those bad cells some more. The thought of that "protection" being taken away is really very frightening. No-one want to think of relapse yet it's hard not to worry about. Two weeks ago, one of our little friends from the Morgan Center relapsed just 3 months off treatment. Her mom told me that she felt like the last years spent on chemotherapy were all for nothing...that they were back to square one or worse. It can make one feel weak in the knees and ill all over.

I am trying very hard to stay optimistic and positive but truthfully, I am scared and conflicted about treatment ending. Molly initially presented with a very high WBC count and that put her into a category of being at "high risk" for relapse. Because of that, she has been treated aggressively. I have to believe that the tremendous amount of chemotherapy she endured has made a significant difference and has "cured" her of this disease but that is something I will not be able to state with confidence for at least another five years. So until then and beyond, I will keep praying and will keep my fingers crossed that all goes well for my little girl.

As the end of Molly's treatment comes nearer, I keep thinking of how unfair it is that Roly is not here to witness this. How he should be by my side and holding his daughter the day of that last spinal tap. How he should be with us to flush the extra pills down the toilet. How he should be sitting with me in the surgical waiting area on the day she has her port removed. We started this hellish journey together...we should be completing it together. It just makes me so damn mad that he is not here. Yes, I have lots of support and help and the best family and amazing friends but it is not the same as sharing this with my husband. Roly loved Molly as I do...in a way that only a parent can experience. It feels so lonely without him and that loneliness is more pronounced as Molly gets closer to completing her protocol. It will be yet another big adjustment for us...how do we live "off-treatment" while still trying to adjust to living without Roly? I have to figure it out without the overt support and love of my husband. I am sure that I will do it because really, I have no other choice but how I wish that Roly was here to share all of this with me. I feel rather cheated...we "signed up" for parenting as a team...not as individuals. I want my teammate back.

Since the new year rang in, we have been working really hard to get some sense of normalcy and predictability back into our lives. We are trying to get on a more structured schedule at home and I am trying to get some routines set so we are not "flying by the seat of our pants" so often. I have relied a great deal on my parents for their help and I will be forever grateful for it but I have come to the realization that this is it...this is our lives now. Roly is not coming home. He is not on a long business trip. He is not working late. The miserable truth is that he will never come through our front door again and that has been so hard for me to admit and accept. I have to learn how to live again...how to care for my kids without my own mom and dad being at my house each day. My kids have to know that they can depend on me...that I can and will take care of them. It is time for Grandma and Grandpa to resume their roles as grandparents...to play with the kids, spoil them, to do all the stuff that grandparents do without having to also assume parental responsibilities...at least not on a regular basis. I know I cannot "resolve" my grief away but I am so tired of being sad that I am trying very hard to "act as if" things are not as hard as they really are. It is my hope that one day, the "act" won't be so much an act and more of a truth but for now, it's pretty much an act. Believe me, I am not going into denial about my pain or anything of that nature. We are all still going to bereavement counseling and therapy and we all have our very difficult moments each day but I just can't live in a miserable state for *most* of the day each day. I have to start somewhere and I guess acting "as if" it was better is at least a place to start.

So, although I have never been one who's put a lot of stock into "resolutions", this year I resolve to find some genuine joy in living again. I resolve to continue to help my kids heal and find their own joy. I resolve to give my parents back the joy of being grandparents and some time for themselves as well as for my nieces and siblings. I resolve to create yet another "new normal" that we will all be comfortable with. I know it will be a journey that consists of a few steps forward and many steps back, but with all of your continued support, love and prayers, we will get there...one step at a time.

Here's to hoping that the start of your new year is going in the direction you desire.

With love,
Donna

Wednesday, January 4, 2006 9:09 PM CST

Hello to everyone and Happy New Year!

It feels like it's been so long since I've been "in touch" with you all! We are now safely home in Long Island and I am happy to tell you that we had a terrific time in Rochester...just what the doctor ordered for me and the kids. We stayed with my dearest friend, Lisa, her husband Randy and their kids, Matthew and Caroline. It was soooo good to be with them all. We did a lot of relaxing and it was just really good to spend time with friends so dear. With Randy's expert help, Billy was able to create an awesome pinewood derby car for Boy Scouts. He made his car in the shape of a bowling pin and created a little bowling ball to sit on top of the car like a driver. It is so perfect for him, as he loves to bowl. Here are a couple of pictures of his car and the creation of it:

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Both Billy and Molly had so much fun playing all sorts of games with Matthew and Caroline. Molly created a new fantasy game during our visit...she called it, "What a Queen Needs". The whole premise of this pretend game is that Molly, the Queen of course, tells everyone else what she needs and they then get it for her. Those of you who know Molly, know this is just the perfect game for her. Matthew and Caroline were great sports to play it with her! All of the kids also put on a few dance shows for us and there was lots of silliness going around. We all enjoyed watching some DVDs of old Brady Bunch episodes as well as episodes of Mork and Mindy.

On New Years eve, we enjoyed the company of Lisa's neighbors following a great dinner. There was lots of eating and even apple martinis. By the time "the ball" dropped in Times Square, most everyone was happy and ringing in the New Year with kisses and hugs. However, Billy was very sad when the clock struck twelve. It was really hard for him to let 2005 slip away, as he told me that it was the last year his dad was alive and he wanted it to go on and not end. I certainly understood where he was coming from. Billy is not one who likes change of any sort but this was especially difficult for him. Seeing the kids in pain breaks my heart and this was one of those very hard moments for me. Eventually, Billy was able to let some of his sadness go and partake in the festivities,even if it was half-hearted. The night ended with Randy bringing out a collection of vinyl records (45's) and playing songs like "Monster Mash" and "Kung Fu Fighting". Everyone had fun dancing and singing along to those.

One other really special thing that we did during our visit was go to one of the best children's museums in the world...Strong Museum. The museum was so amazing in something that it did for us. Since a place like Strong is really a "germ fest", especially this time of year and during the school break, it was not a great idea to take Molly and expose her to so much potential illness. We phoned Strong and asked if they would let us in an hour before the museum actually opened so Molly could spend some time there before it got crowded. Not only did they agree to that, they treated us all to our entrance fees and provided us with a personal guide named Karen to take us around and answer all of our questions! Now how's that for making an accommodation?! I just couldn't believe their generosity and have to get to work on a special thank you note to them.

Molly and Billy *LOVED* being at Strong Museum so much! There, they have so many terrific exhibits like a kid-sized supermarket that Molly could "shop in", a pretend post office, a re-creation of the set of Sesame Street, a really cool dance area, a turn of the century play house complete with American Girl dress up clothes, and much, much more! Here are a few pictures from that special morning:

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To Lisa and Randy, thank you guys so very much for your hospitality and tender loving care of all of us. You are just awesome friends and my only regret is that we don't live closer and get to visit in person more often.

Well, I promised I would fill you in on how Christmas went so here is the "cliff note" version. As expected, the holidays were very hard without having Roly here to celebrate them with us. It was busy though and I tried to stay as active as I could to not think too much about our profound loss for fear that if I stopped for long, I wouldn't be able to get going again. Christmas Eve was spent at my brother Van's house and that has been our tradition for some time now. It was really nice...everything was done beautifully. The food was great, Santa paid us all a visit and the cousins had lots of time to play with one another and show off some of their new gifts. After the get together, my parents accompanied us home and slept over. I am so grateful that they did that, as I was not looking forward to waking up "alone" on Christmas morning without Roly by my side. Having Grandma and Grandpa here made it more festive and special for the kids and that helped me to feel a little better.

As you can imagine, Billy and Molly were the recipients of *WAY TOO MANY* gifts this year! So many incredible and giving people thought of us and it warmed my heart to know that so many care. I've joked that the UPS man and I are on a first name basis since he's paid us so many visits recently! We cannot thank *EVERYONE* enough for the kindness extended to us. The prayers offered this holiday season mean so much to me. To all of you who thought of us and prayed for us, I thank you from the bottom of my heart. Lots of people also went out of their way to send Billy and Molly some special trinkets and gifts. I can tell you that they were truly thrilled with each and every package they opened. If material things could heal one's broken heart, then my kids would be healed many times over by now. Just to give you an example of how kind people are, I want to tell you about something that a local family did for us by helping "Santa" to bring some very special things to the kids and me. This woman, Patti and her siblings decided a few years ago instead of exchanging gifts with one another, they would pool their gift money and do something special for someone else. Well, this year, they decided to brighten our Christmas and we will never forget what they did. They helped Santa bring Molly a real, life-size Barbie Jeep, a bike for Billy and lots of treats and gift certificates for me! Their selflessness will be with me always and like so many of you, they truly embodied what the holiday season is about...giving rather than receiving. It never ceases to amaze me that just when I feel like I cannot go on or am too tired to do another thing, there is someone there to remind me that the world is FULL of incredible, generous, loving, caring and compassionate people. Thank you all for making an oh-so-difficult journey more bearable. You have no idea how much we are all helped by your kindness.

So, here is the "Christmas Photo Gallery". I hope you enjoy some of these photos.

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May 2006 be a great year for us all...may it bring healing and hope, peace and love, happiness and good health to us all.

With much love,
Donna

Both Billy and Molly had so much fun playing all sorts of games with Matthew and Caroline. Molly created a new fantasy game during our visit...she called it, "What a Queen Needs". The whole premise of this pretend game is that Molly, the Queen of course, tells everyone else what she needs and they then get it for her. Those of you who know Molly, know this is just the perfect game for her. Matthew and Caroline were great sports to play it with her! All of the kids also put on a few dance shows for us and there was lots of silliness going around. We all enjoyed watching some DVDs of old Brady Bunch episodes as well as episodes of Mork and Mindy.

On New Years eve, we enjoyed the company of Lisa's neighbors following a great dinner. There was lots of eating and even apple martinis. By the time "the ball" dropped in Times Square, most everyone was happy and ringing in the New Year with kisses and hugs. However, Billy was very sad when the clock struck twelve. It was really hard for him to let 2005 slip away, as he told me that it was the last year his dad was alive and he wanted it to go on and not end. I certainly understood where he was coming from. Billy is not one who likes change of any sort but this was especially difficult for him. Seeing the kids in pain breaks my heart and this was one of those very hard moments for me. Eventually, Billy was able to let some of his sadness go and partake in the festivities,even if it was half-hearted. The night ended with Randy bringing out a collection of vinyl records (45's) and playing songs like "Monster Mash" and "Kung Fu Fighting". Everyone had fun dancing and singing along to those.

One other really special thing that we did during our visit was go to one of the best children's museums in the world...Strong Museum. The museum was so amazing in something that it did for us. Since a place like Strong is really a "germ fest", especially this time of year and during the school break, it was not a great idea to take Molly and expose her to so much potential illness. We phoned Strong and asked if they would let us in an hour before the museum actually opened so Molly could spend some time there before it got crowded. Not only did they agree to that, they treated us all to our entrance fees and provided us with a personal guide named Karen to take us around and answer all of our questions! Now how's that for making an accommodation?! I just couldn't believe their generosity and have to get to work on a special thank you note to them.

Molly and Billy *LOVED* being at Strong Museum so much! There, they have so many terrific exhibits like a kid-sized supermarket that Molly could "shop in", a pretend post office, a re-creation of the set of Sesame Street, a really cool dance area, a turn of the century play house complete with American Girl dress up clothes, and much, much more! Here are a few pictures from that special morning:

To Lisa and Randy, thank you guys so very much for your hospitality and tender loving care of all of us. You are just awesome friends and my only regret is that we don't live closer and get to visit in person more often.

Well, I promised I would fill you in on how Christmas went so here is the "cliff note" version. As expected, the holidays were very hard without having Roly here to celebrate them with us. It was busy though and I tried to stay as active as I could to not think too much about our profound loss for fear that if I stopped for long, I wouldn't be able to get going again. Christmas Eve was spent at my brother Van's house and that has been our tradition for some time now. It was really nice...everything was done beautifully. The food was great, Santa paid us all a visit and the cousins had lots of time to play with one another and show off some of their new gifts. After the get together, my parents accompanied us home and slept over. I am so grateful that they did that, as I was not looking forward to waking up "alone" on Christmas morning without Roly by my side. Having Grandma and Grandpa here made it more festive and special for the kids and that helped me to feel a little better.

As you can imagine, Billy and Molly were the recipients of *WAY TOO MANY* gifts this year! So many incredible and giving people thought of us and it warmed my heart to know that so many care. I've joked that the UPS man and I are on a first name basis since he's paid us so many visits recently! We cannot thank *EVERYONE* enough for the kindness extended to us. The prayers offered this holiday season mean so much to me. To all of you who thought of us and prayed for us, I thank you from the bottom of my heart. Lots of people also went out of their way to send Billy and Molly some special trinkets and gifts. I can tell you that they were truly thrilled with each and every package they opened. If material things could heal one's broken heart, then my kids would be healed many times over by now. Just to give you an example of how kind people are, I want to tell you about something that a local family did for us by helping "Santa" to bring some very special things to the kids and me. This woman, Patti and her siblings decided a few years ago instead of exchanging gifts with one another, they would pool their gift money and do something special for someone else. Well, this year, they decided to brighten our Christmas and we will never forget what they did. They helped Santa bring Molly a real, life-size Barbie Jeep, a bike for Billy and lots of treats and gift certificates for me! Their selflessness will be with me always and like so many of you, they truly embodied what the holiday season is about...giving rather than receiving. It never ceases to amaze me that just when I feel like I cannot go on or am too tired to do another thing, there is someone there to remind me that the world is FULL of incredible, generous, loving, caring and compassionate people. Thank you all for making an oh-so-difficult journey more bearable. You have no idea how much we are all helped by your kindness.

So, here is the "Christmas Photo Gallery". I hope you enjoy some of these photos.

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May 2006 be a great year for us all...may it bring healing and hope, peace and love, happiness and good health to us all.

With much love,
Donna

Friday, December 30, 2005 1:06 PM CST

Hello everyone,

I hope you all had a really wonderful holiday and are looking forward to 2006. I know we are hopeful that 2006 will be a good year for us all.

We made all made it through Christmas and had lots of happy moments, though of course, Roly was greatly missed. That is actually the understatement of the century. I will post next week with lots of pictures and details about the holiday but right now, we are in Rochester, NY at my dearest friend's home. Molly's counts came up after a week of no chemo so we were able to travel and for that, I am sooo grateful. I didn't have an opportunity to download all of my photos from Christmas (of which there are many...lol) before we left so I will do it when I get home.

For now, we plan to enjoy our visit and the change of scenery. Billy will be working on his pinewood derby car for cub scouts and Lisa and I will be hitting the scrapbook store...at least to browse around if nothing else.

To all of you, my most heartfelt wishes for a New Year filled with good health, peace, love and happinenss for you all.

Love,
Donna

Saturday, December 24, 2005 7:21 AM CST

Hello everyone,

I am going to keep this entry short and sweet. From the bottom of my heart, I wish each and every one of you peace and joy this Christmas and holiday season. We are going forward with the holidays in the best way that we can.

Tonight, we will be with my brother's family and tomorrow, we will be home. My brother will join us and my parents will be sleeping over tonight.

There is still more wrapping to do and things to get ready. I did not bake one cookie this year...that is a first for me. Oh well, perhaps next year.

Molly is neutropenic, which means her white blood cell count is too low to continue with her chemo right now. It also means that she is very susceptible to infection. Please pray that she remains healthy among all of the cousins and company. I just cannot isolate her on Christmas, especially this Christmas.

I'll update as soon as the festivities are over and will let you know how it all went.

To all of the incredible angels out there who have been so kind to my family always but especially during the holidays, I thank you a million times over. The packages, cards, sweets and treats have been overwhelming. It is comforting to know that so many people do care and I just wish there was some way that I could adequately convey our gratitude and appreciation. May God bless you all now and always.

With much love,
Donna

Sunday, December 18, 2005 7:36 PM CST

Hello again everyone,

Greetings from Long Island, where the climate sure has been wacky lately. This month, we had a stretch of snow and bitter cold and it was really beginning to feel like winter. Now though, it has gotten very mild and everything is kind of muddy. I wonder if we will have a white Christmas.

Well, on to some news about our family. I am happy to report that my father-in-law continues to feel well. He looks great and saw his surgeon for a follow-up visit a week after his surgery. It does not appear that he will need any follow-up treatment for the malignancy that was removed, as the surgeon seems confident that he was able to remove everything. Since all was well, he and my mother-in-law returned to Florida. We miss them very much, especially this holiday season. I know it won't be easy for any of us and I just wish that we all lived within driving distance so that we didn't have to wait so long to visit again. The kids feel very close to Roly's parents and it will be hard for Billy and Molly to be without them for a while. However, we have booked our flights for a visit in February. By then, I am sure that I will be ready to get out of here and into some warm sunshine.

As for Miss Molly, she has not really been herself as of late. I think the chemo she received not too long ago hit her kind of hard and she has been very tired, more so than usual. She has been taking naps (which is not typical for her) and when she gets into bed at night, she is out like a light within just a couple of minutes. She was on steroids last week and instead of engaging in angry, demanding outbursts (which she usually does while on steriods), she has been really "mushy" and clingy. She has talked a lot about missing her dad and has shed quite a few tears about this over the week. That really breaks my heart. I want so badly to take her pain away yet all I can do is empathize, hold her and do my best to comfort her. Lately, when anyone asks her what she wants for Christmas, she says "What I really want is my dad". She asked me if Santa could bring him. She believes in "Christmas Magic" so to her, Roly coming home is a possibility. It has been so hard to tell her that her Christmas wish cannot be fulfilled. I told her that Santa can only bring things...not people. She misses her dad so much. She drew Roly some pictures and asked me to take her to the cemetery so she could leave them there. I took her on Friday, after her preschool Christmas party and she was actually excited to walk with me and fill the vase with water for the roses we brought. She stood at the edge of his grave and said softly, "Merry Christmas Daddy". I'm telling you, I just want the holidays to come and go already this year. It is all so difficult.

As opposed to Molly who is so open about her feelings, Billy remains fairly quiet about his pain. He doesn't talk too much about Roly or how he feels about his death but I know it is affecting him deeply. The other night, it was just Billy and me in the car. I asked him directly about how he was feeling with regard to Roly. I told him that sometimes it concerns me that he is so quiet and that I don't really see him cry or outwardly sad about this. He had some interesting responses. He told me that his dad didn't really die. When I pushed him to explain this further, he told me that only his dad's body died. That his dad is still alive and in heaven so he feels OK knowing that. While I supported and acknowledged that, I pressed him a little more and asked him how he felt about the fact that he can't talk to his dad any more and he told me that he talks to his dad all of the time...in his own mind and when he is quiet. When I asked about the lack of apparent sadness and tears, Billy told me, "Mom, when you see me angry...that is really my sadness. I can't really be sad but I do feel really angry and a lot of my anger has to do with my sadness". Wow I thought...he has some understanding of his emotions. Then he proceeded to tell me that since his anger has so much to do with his sadness, I should just try to be a little more patient with him. I told him I would try. When Molly starts weeping about Roly, Billy gets upset. He tends to leave the room and once recently told her to "just get over it already". It is so much for a little boy to manage.

Billy did an wonderful thing the other day and I am so proud of him that I have to share it. His school held a holiday boutique and Billy was able to get $20.00 out of each of his grandmothers so he could go shopping. He did not buy one thing for himself. Instead, he bought for his sister, for me, for his grandparents and for our friends, Lisa, Randy, Matthew and Caroline. We are going to visit Lisa's family for the New Year and Billy said he wanted to bring them each a little something. He put a lot of thought into these gifts and was so happy with himself. He brought the gifts home and wrapped them himself. He even wrote out his own gift tags. He told me that Christmas is more about giving than receiving and when I saw what he did and heard what he said, every ounce of frustration I have had with him for less than *ideal* behavior just vanished into thin air and was replaced with overwhelming pride and happiness for who Billy is growing into, despite the adversities he has faced. He is such a good boy overall and I am really lucky to have him for my son.

On to another topic, last week on Monday evening, we went to the Center for Hope, which is the bereavement program affiliated with Molly's treating hospital. There was a short memorial service and then the families who participate in the program came together for a pot luck dinner. Each family was asked to bring a favorite dish of their deceased special person. The kids wanted to bring pineapple soda, which we brought but we also brought rigatoni ala vodka, which Roly loved. I ordered it from a local restaurant and it was great. I was struck by how many people were there that night. So many people, grieving and sad, all together at the same time. It is healing to be with others who really understand your pain yet it is humbling too. I think sometimes I get so focused on us and all that we have had to bear that I forget that there is a whole world out there with lots and lots of people in pain and suffering, each in their own unique way. This place, The Center for Hope, is really a very supportive and loving place. It feels good to be there and I am so grateful that it exists.

Well, on to some more of what the Guarton clan has been up to. Since we had a snow day one day a little over a week ago, we all stayed at home in the morning and relaxed a bit. That afternoon, Roly's sister (Vicky) and I did a little Christmas shopping and then I took Billy to pack night for Boy Scouts. He got his material for the pine wood derby and he is really looking forward to working on this with our good friend, Randy and his son Matthew when we go to visit them after Christmas.

Last Saturday, Molly went to dance class. She was tired and had a hard time keeping up but she was really happy to be there. Here is a really cute picture of her with her dance instructor, Miss Eileen and her friend, Morgan. Miss Eileen has to be one of the *nicest* people we have ever met and we just adore her.

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In the afternoon, we met our friends, the Rosenbergs and the Fredericks and went to see the Chronicles of Narnia. Molly of all people was so excited to see this movie. She had been talking about it incessantly since she saw the commercial for it some time ago. It was great, though a bit intense and violent at times. Molly wasn't afraid one bit. She actually knew the story well because I had read her a "watered down" version of it not long ago. Billy on the other hand really liked the movie but worried about having nightmares after seeing it. I think he has kind of gotten past that now but I don't think he is in any rush to see the movie again. The next day, the hospital and the Sarah Grace Foundation hosted the annual holiday party for the hem-onc patients. That took place in the hospital cafeteria and Molly was really happy to see some of her friends from the clinic that she hadn't seen in a while. She was especially happy to see her friend, Zoe who looks fabulous! Here is a picture of Molly with a clown at the party...

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Here she is with Santa and his helpers...

Billy didn't go to the party because his school had a trip to the Bronx Zoo that day to see the holiday lights. The zoo is all decorated for the holidays and it really is spectacular. There are lots of activities there for the kids like ice carving, story telling, caroling and more. Billy went with a friend's parent and I met him there later. My parents picked up Molly from the hospital and brought her home while I traveled on that night to the zoo. It would have been much too cold for Molly, though she would have like it. It was just terrific. There was a "Narnia" theme in some of the displays there and that was kind of cool since we had just seen the movie. Here is a picture of Billy with one of the Narnia characters from the zoo.

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Over the last week, there have been even more holiday activities. Billy had his holiday concert at school on Friday evening and that was just great. He sang with his class, with his Spanish class and played the recorder with a group. He also had a very short solo during the finale. He did a terrific job. Molly also had her little holiday performance at the Morgan Center earlier that day. It was so cute. After singing a few songs, Santa paid her and her classmates a visit and of course, that was so much fun. Here is a picture of Molly all dressed up for her little show...

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Here she is with "Miss" Nancy and Morgan...

Yesterday, I took Billy and Molly to see a local performance of "The Nutcracker". Both kids loved it. Afterwards, our cousins came by for a visit and brought lots of merriment to our house. One cousin (Peter) dressed up as Santa and gave out *way too many* gifts to the kids. Of course, the children were *THRILLED* with their presents and we can't thank you guys enough.

Molly isn't too excited here, is she?

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This gift was a *BIG* hit! Thanks a lot to Uncle Steve for putting it together!

Billy really loved his gifts too!!

Peter, MR, Christina, Steve (who is new to our big, fat Greek family), Cynthia and Rich, thank you all so much for your thoughtfulness and generosity. We really do appreciate it. As usual, you guys did too much and were "over the top". Thanks though for putting big smiles on the kids faces. And Cynthia, thanks for sending Richie along...Billy was so happy to play with him.

As for me, I have been running around like a "chicken without my head" lately. I feel really overwhelmed and overextended. Just managing our crazy day to day lives is a lot but add in the holidays and the construction project and well, let's just say it's a lot to manage. I am just about finished with the Christmas shopping and for that, I am so grateful. If I had to stand on one more long line listening to piped in music about how it is the "most wonderful time of the year", I think I would scream. I have always loved Christmas and while I am *doing* all of the things to make the holiday happy for the kids, my heart is just not into it this year. I feel so very empty doing all of this preparation without Roly and it just angers me so that he is not here.

As for the construction, it is coming along nicely. The bathrooms have been framed, sheet-rocked and the tile is on the wall. It has to be grouted and the floors have to go in. Of course, all of the fixtures and vanities have yet to go in to. There is lots of re-painting to do but that won't happen until after the holidays. I have to still pick out new bedroom furniture and carpet and order those. Once that is done and my bedroom is emptied (which is part of this project), the contractor will put up crown molding and a new ceiling fan. I am also getting new mirrored doors for my closet so that will be nice. I am really looking forward to having a new bedroom, as it has been really hard to go into my room as it is now. Each time I am there, it is such a reminder that Roly is not and I just feel so lonely. So perhaps it will be the physical, outward symbol of a new beginning...one where I hope we all kind find some peace and solace.

Well, I promise to try to update again sooner than I did this time! Time is so limited right now...it's just been tough to find the time to sit down and write! Until then, we wish you all a peaceful and joyous approach to the holidays.

With much love,
Donna

Friday, December 9, 2005 10:00 AM EST

UPDATE 12/9/05

I want to thank everyone who has been concerned and praying for my father-in-law. His surgery went very well. The doctor felt confident that he removed what needed to come out and that he got it all, we hope without the need for any follow-up treatment. The doctor did say that the growth looked malignant but he doesn't think it is going to be problematic beyond the need for the surgery. Roly's dad went home the same day and he's been up and about, eating, drinking and talking. His voice sounds pretty good and we are grateful the doctor was able to leave his vocal cords in tact. So, one major problem seems to have been tackled.

Molly is doing OK too, though we had the day from "hell" at the clinic. We ended up being there for almost 12 hours, a new record I think without being admitted. We arrived early as we were supposed to and Molly got her port accessed and hooked up to an IV pump. She started with her pre-medication of benadryl and tylenol so that she could get transfused with the FFP. An FFP transfusion takes about an hour and a half. Then she went to surgical annex where she got sedated and received her spinal tap and intrathecal chemo. Then back upstairs to the clinic. Her general blood counts were OK but her immune functions have been steadily dropping. As a result, her doctor explained that there was no choice but to give IVIG. So, that in and of itself, was a 4 hour infusion. Molly did really well with it and was able to avoid the side effects of a severe headache and fevers. The she received IV dexamethasone and Vincristine. Then she got IV pentamidine, another antibiotic which also takes about an hour and a half to infuse. The doctor also put her on zithromax because her sinuses just wont seem to clear up and we are concerned that the little cold she has been fighting might turn into a full blown infection and that wouldn't be good with a poor functioning immune system. So, by the time we left it was late, cold out and we were tired.

When we got home, Molly started vomiting but she seemed to feel better after that. Unfortunately, the one functioning bathroom we have decided to stop functioning. The toilet was overflowing all over the floor so that was **REALLY, REALLY FUN** to clean up. After speaking to the contractor who didn't think it had anything to do with the work being done (interesting coincidence though that what was done all day that day was plumbing with the water off, etc.), I plunged and plunged and plunged the toilet and finally it unclogged. I think I hit the sack around 2 am.

Today thank God, it snowed enough to declare it a snow day in Long Island. Why would I be happy about that? I got to sleep an extra couple of hours and so for that, I am really grateful.

OK, wish me luck with the next couple of weeks. There is still a lot to do to get ready for the holidays and lots of construction chaos at home.

With love,
Donna

Tuesday, December 6, 2005 9:16 PM CST
Hello everyone,

Well, my last "real" update was Thanksgiving and I just can't believe how quickly the last couple of weeks went by. So much has gone on that I don't think I can fit it all into one update! And to my dear friend Kristie (Kendrie�s mom), no, the contractor didn't spackle me into the wall but I'm beginning to wish he had! (LOL) It's just been rather "crazy" here lately!

Let's start with Thanksgiving. I have to be honest and share that the holiday was much harder for me than I had anticipated. I think I convinced myself that I would be busy and therefore distracted but truly, that wasn't the case. Yes, I was busy...but the distraction thing, well...that didn't quite work out as I had hoped. Roly's absence was just so apparent and my heart ached so much all day long. To keep busy, I cooked a bunch of new dishes and brought them to my brother's house. I enjoy cooking and would traditionally make a few tasty treats (mostly recipes from the November issue of Bon Appetite)! for the Thanksgiving table but Roly was always by my side, keeping me company and helping me out. We would joke that he was the "sous chef" and this year, how I missed him while I prepared everything. Roly's Aunt Judy came to visit from Florida and she stepped in, assisting me and keeping me company but as *wonderful* as Aunt Judy was, it was just not the same without my husband. It was the first year that Roly's "special bread stuffing" didn't get made and I regret not making it. He would start with Stove Top and then add just about everything but the kitchen sink! It was truly great. Next year, it will surely be on the menu, even though the exact recipe is not written down anywhere. I will just have to work on replicating it all year so that by the time Thanksgiving rolls around again, it will be at least "close enough." As for the kids, I think they enjoyed the day. They had fun playing with their cousins and were thrilled that both sets of grandparents and Aunt Judy were all together in New York to share the day with them. Here are a couple of pictures from Thanksgiving:

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Molly can't leave her brother alone, even for a picture!

Our little pilgrim

The day after Thanksgiving was Billy's 9th birthday. To celebrate the day, I took Billy, Molly, Billy's best friend Michael, my mom, my mother-in-law, Aunt Judy and Chelsea (our nanny) into NYC to see the Christmas show at Radio City Music Hall. Molly wasn't feeling great that day (she has been battling a cold on and off for a while now) so instead of taking the train, I decided to drive. Much to my surprise, there was NO TRAFFIC. For those of you who live in NY or are familiar with driving through the city, you know that this almost never happens. I was totally shocked. Door to door, it was no more than 40 minutes! So, since we arrived early in Manhattan, we decided to walk to Times Square and go shopping at the huge Toys R Us that is there. The store was *packed* but Billy was able to find a few video games to cash those gift cards in on so he was really happy. We were able to get on the Ferris wheel that is in the store and the kids really enjoyed that. So, after Toys R Us, we walked to Rockefeller Center and went to see the show.

Until the time that Molly got ill, Roly and I took Billy and then Billy and Molly to the city each holiday season to see the Christmas show. Sometimes we went with others but many times we went just with each other. It was always a treat and even though again, Roly's presence was sorely missed, the show was excellent and enjoyed by all. Molly so loved watching the Rockettes. I so loved watching her face light up with delight.

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Just after the show...boy, it was fun.

So the birthday celebration did not end there. After the show, we walked a few blocks to a themed restaurant called MARS 2112. The idea is that you are eating on the planet Mars. The food was pretty awful but that didn't matter. The kids *loved* the atmosphere and really got a kick out of the "Martians" that came by and visited us at our table. Dessert was awesome though...that I have to admit. The restaurant also has an arcade in it so that too was a big hit, especially with Billy. Oh, and who can forget the gift shop!

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Billy and a Martian who visited our table

Well, by the time that was all over and done with, we were wiped out and headed home. I know Billy really enjoyed the day and that was so important to me.

Over the Thanksgiving weekend, my brother and his family, my parents, aunt and uncle as well as cousins came by and dragged out all of our Christmas decorations from the crawl space and shed. Roly and I have so many, including a large "Christmas in the City" lighted village. We set the village up just as Roly always had done it. He actually created a platform for the houses to sit on and outlined where each house was to go so it was not that hard to replicate his design. He was the one each year to work on it meticulously until it was just right. I love to look at it now because even though it is so much work to display everything, it makes me feel just a little closer to him. During this decorating "event," the lights went up outside and the Christmas tree was put up too. This year, a new tree went up but all of our ornaments are the same. The new tree has white lights whereas before, we always used colored ones. It is a little symbolic way of acknowledging that things are different but we are still holding on to those things and memories that are so dear to us.

Overall, the house really looks nice (except that we are under construction...so in the middle of our beautiful den is a medicine cabinet, lighting fixture, bathtub...you get the idea). Honestly, the contractor is really great. Roly and I used him before to redo our kitchen and he was so neat and reliable. So far, he is proving to be the same this time around. In fact, here's a little story to tell you what kind of guy the contractor is.

When Roly died, Joe (the contractor) had been finished with our house for more than a year. He heard about Roly's death and he actually took a day off from work to attend his funeral. As I walked down the long church aisle, I noticed him sitting there and I just couldn't believe it. He is a really nice guy but now that I type this, I guess it also says something about how nice of guy Roly was. To leave such an impression on someone he wasn't really close to and only had a brief business relationship with...that's the kind of guy my husband was.

So back to the construction...I am doing the two bathrooms upstairs over, as they were really in need of repair and renovation. The project is not bothering me so far but it is turning into more than I had anticipated. The bathrooms were renovated at some point by the previous owners and whoever did the work, didn't really do it properly. When my contractor ripped out the old bathrooms, he found a structural problem which explains why one spot in our den ceiling always cracked. (The bathrooms are over the den.) In order to repair the problem, a header has to go in and new framing has to be done. Lots of the walls have minor cracks from the banging and removal of the old bathrooms so there is a lot of spackling and lots of additional painting that will have to be done too. But isn't that always the way with construction? No matter what you do and how well you plan it, one thing always leads to something else and the list just doesn't seem to end.

So, what else you ask? As I mentioned briefly before, Roly's dad is going to have surgery on Wednesday to remove a growth in his throat. He has had this before but the growth is back. The doctor is optimistic that everything will be OK but of course, we are all still a bit concerned. The last time the growth came out it was malignant but they got it all and he didn't need any follow-up treatment. We are hoping for the same this time. Roly's dad is in his mid 70's and any type of surgery is not really too desired but there is no choice about this and at least we know he is in excellent hands with this surgeon. Please continue to keep him in your prayers. Roly's sister flew in from Florida today to be here with her parents for the operation. Though we wish she was coming under better circumstances, we are always happy to have Vicky with us.

As for me, I feel like I have been going nonstop on a treadmill lately. I think I have been averaging about 4-6 hours of sleep a night and that is not enough for me! Even with all of the help with decorating, there was still a lot left for me to do. I have been dragging boxes of decorations that I didn't use back into the crawl space and have been cleaning out so many areas. Our shed had to be cleaned out to make room for the building supplies and my dad was of tremendous help with that. Of course, the 2 bathrooms upstairs needed to be totally cleaned out before they were gutted along with our linen closet. My bedroom also had to get cleaned out to some extent too because it is adjacent to the area that the men are working in. A large oak desk needs to be moved from our den to Billy's room and while I have the contractors here, I was hoping they would do it so I cleaned that out too. What a job! You wouldn't believe how much junk can accumulate in every little nic and corner of a desk! We have recently gotten some snow so I had to find and dig out the snow clothes...most of which Billy has just out grown! Looks like an order to Lands End is in the near future. That search resulted in our hall closet being cleaned out too. I am fairly behind on the Christmas shopping and I think I will be resorting to ordering over the Internet during the next couple of days. I just don't have it in me to brave the malls. The Christmas cards are done and thanks to my father-in-law, they are in envelopes and stamped though I have quite a few addresses to get and update. Though it's taken us longer than I would have liked, Billy's birthday thank you notes are finally written. Of course, there are lots of extra "holiday happenings" like the hospital Christmas party and school concerts coming up. Over the past weekend, I met my brother and his family at a local nursery, "Hicks" and it was so beautifully decorated. We paid a visit to Santa and that was fun. All of this is truly "good" but it does have me running around even more. I guess it would be fair to say that I am just really, really tired right now and feel like I am keeping it together...barely.

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Billy and Molly at Hicks Nursery

Cousins at the nursery

Tomorrow, Molly has a big day at the clinic. She is scheduled for intrathecal chemo, which is chemo that is delivered directly into her spinal fluid while she is sedated. That means that she has to go without food or drink from midnight tonight until the procedure is completed in the morning. That is never fun with a preschool child. Before the procedure, Molly has to get transfused with "FFP" or "Fresh Frozen Plasma" because she has a Factor 7 deficiency. That deficiency means that she could have problems clotting so anytime anything invasive is done, she has to have the FFP first. (The FFP has enough Factor 7 in it to help protect Molly from bleeding too much during the spinal tap.) Then she has a host of IV chemo (vincristine and dexamethasone) as well as an IV antibiotic that she gets prophylactically once each month to prevent pneumonia. Molly's immune functions have been dropping, probably because of all of the chemo she has received. She has been having a tough time just fighting off a tiny little cold she seems to have. She could get an infusion of IVIG but there are potentially a lot of side effects that could come from this so we are trying to avoid it if possible. I think we will be at the clinic for quite a while tomorrow.

Finally, for a quick update on some of our friends...Keegan got some WONDERFUL news! Though initially it appeared that he may have relapsed, a recent test has been CONCLUSIVE that the cells in question were NOT leukemic!! That is so terrific and we are thrilled for the whole family. It doesn't mean 100 percent that Keegan is out of the woods so to speak but this is *very* encouraging. Some others however are still facing very difficult struggles. Mike has been having a difficult time. He is such a terrific man and his family is incredible. Please continue to keep him in your prayers. Next, Hunter and her family continue in their wait to see if her leukemia remains in remission. Today they got great news that the bone marrow is clear but one cell was in her spinal fluid. Hunter's family is hoping for some positive news about this very soon. One of the most beautiful little ones from my on line support group, ALL-KIDS, Alexia has in fact relapsed and is in critical condition. She is in an ICU trying to recover from sepsis. Please, please pray for this sweet child and her family.

I will try to update you all as soon as I can about how Molly does tomorrow and about my father-in-law as well. As always, thank you from the bottom of my heart for your continued care, support, interest and love. Thank you for visiting this page, for leaving us so many inspiring and thoughtful messages and for the prayers that are being offered on our behalf. Though this is a very difficult time of year for all of us, we are getting through the days because of our incredible support network and that includes all of you.

With much love,
Donna

Thursday, December 1, 2005 11:51 PM CST

Hello everyone,

This will probably be the shortest journal entry I have written in a long time...(lol). We are all doing OK but things in our house right now are quite chaotic and hectic. I will give details later...hopefully tomorrow I will get a chance to give a "real" update.

Molly had not been feeling great late last week and earlier this week. I think she just had a cold and her blood counts support that. Her ANC went from 650 to 3500, indicating that she was certainly fighting something. She seems better now and for that I am thankful.

Roly's parents have been visiting with us for the past couple of weeks. They were supposed to return to Florida on Sunday but my father-in-law needs to have surgery on Wednesday for a recurrent growth in his throat. His surgeon is in NY and each time he comes for a visit, he goes to see him for a follow-up check-up. Well, this time he got an unwanted surprise to hear that what was there before, has recurred. We are optimistic and hopeful that all will be fine but the growth is near the vocal cords and they have already been "scraped" in the past. We are really keeping our fingers crossed and praying that what is there now has not invaded the cords further. Please keep him in your prayers.

Well, I will update more very soon. Tomorrow morning (actually today given the fact that it is almost 1 am EST), my contractor is coming to demolish our bathrooms upstairs. They are in desperate need of repair and updating so I guess one could say...'Tis the season! Looks like we're in for a bit more chaos.

Talk to you all very soon.

With much love,
Donna

Thursday, November 24, 2005 11:31 AM CST

Happy Thanksgiving to everyone,

I just reread the journal entry I wrote last year...I was wondering, "What was my life like one year ago? What was I grateful for then?" So much has changed in the past 8 months, that the life I am living now *resembles* the one I had in many ways but it is not the same life. It is profoundly different. The same is true for all of us. We are still very much in the throes of figuring out *how* to approach life again. How to find joy when our hearts are broken. How to find peace when we are so outraged. How to be grateful despite our tremendous losses.

Last year we had a bit of a tough Thanksgiving. I believe it was around that time that Molly's profuse nosebleeds began and she had one the night before Thanksgiving. I remember that night like it was yesterday. Roly and I could not get the nose to stop bleeding. I remember the tremendous anxiety I felt as I saw the blood pouring from her nose. I remember the doctor who was on call and of little help to us. I remember looking at Roly and saying, "We are going to have to go to the hospital...but I *need* you to come with me. I need you to pinch Molly's nose while I am driving." I remember calling my brother Van and my neighbor across the street, Sean, who sat with Billy until Van arrived. I remember driving so quickly down the parkway and I remember hearing Roly say from the back seat as he shouted, "Holy *&^you should see the HUGE clot that just came out of Molly's nose!!" And I remember how the nose pretty much stopped bleeding after that.

Though we were exhausted, we were relieved. In the morning, we still decided that we would go into NYC to Roly's office and watch the Macy's Thanksgiving Day Parade from the windows inside. This year, I am so grateful that we did that. We were so close to not going but it was always something we wanted to do and I am so happy that we did do it as a family. We had a really great time. How I wish I could push a "rewind" button and go back to Thanksgiving last year.

Each year on Thanksgiving, Roly and I would ask the kids about those things they were grateful for. Well, some traditions should carry on no matter what so here is what they said...

Me: "Molly, what are you grateful for"?

Molly: "What Miss Nancy wrote on the turkey I made in school. It's on the frigerdator."

Me: "Do you remember what that said"?

Molly: "Yes".

Me: "Well, what did it say"?

Molly: "Oh...geez...just go read it!" (said with a bit of disgust...lol).

And off she went to see the parade on television.

So, here is what is written on the tail feathers of her turkey: Molly is thankful for..."friends, Mom and Dad, Miss Joy and Miss Nancy, Billy and Chelsea, and Yia Yia and Papa and Yia Yia and Papa.

As for Billy, here is how it went with him.

Me: "Billy, I know it's a bit of a tough year to feel thankful, but what are you thankful for"?

Billy: "All that I have...my family...that's really it".

Me: "Anything else"?

Billy: "I guess I am thankful that daddy died".

Me: "What do you mean by that"?

Billy: "Well, Daddy is with God and Jesus and that is the best place you can be. Even though I wish he was here on earth with us, I am thankful that daddy is with God."

Then I sent him off to watch the parade. Such profound words from such a little boy.

Though honestly for me, it is a challenge to feel grateful when I am hurting so much, I *do* feel grateful for so many people and things that have helped us to cope with all we are going through. Truly, if it was not for the support, love and faith shared with us, we would not be able to go on. If I tried to acknowledge each and every person who has been *there* for us, I would probably cause caringbridge to hit some "to capacity" status and shut it down until the techs created more space. That said, here is a very *partial* list of people and things I am grateful for:

* Our family members...for their constant support and love, understanding and patience. Especially my parents, my brother Van and his family, Roly's parents, his sister Vicky and her family, all of our aunts, uncles and cousins.

* Our friends (in no particular order)....Lisa, Randy and their family, Joe, Christine and their family, Eileen, Steve and their family, Sheila, Larry and their family, Denise, Michael and their family, Lauri, Eric and their family, Donna, Ken and their family, Tim, Karine and their family, Amy, Neil and their family, Danielle, Ian and their family, Michele, Dominick and their family, Kathi, Dennis and their (extended) families, Linda, Aaron and their family, MaryAnne, Glenn and their family, Nancy, Rod and their family, Flo, Bob and their family, Andy, Victoria and their family and the list can go on.

*All of the incredible individuals and families I have come to know and love through my on-line support group, ALL-KIDS. Each and every family and child is precious and a blessing in my life. Thank you all.

*All of the people that have come to love and care about my family through caringbridge...again way to many to mention all by name but some are (in no particular order)...Mrs. Pam, Julie Rogers, Pam Sturgill and the Prayer Bears, Jan Smith, Lisa Peterson, Stacey and Bill, Katherine and Kathy Moyer, the Machinski family, Becky Klotz, Sherry Mertz, Angela Conklin, Missi, Abbie Dosier, Brenda Harris, Tricia, Liz Unger, Ariana, Debbie Nagy, Tina and Lance, Deb Whaley, Cathy Hroncich, Karen Perdue, Kay, Frances and Paul, Sharon Owttrim-Fraser, Briana Roehling, Jodi Phelan, Rose from Brazil, Haley, Mary and Mike Slade, Mary Lou Thomson, Julie & Shelby Stimpson, Jenny Woodall, Julie Wargo, Kim Moore, Marci, Tammy Setphens, Char and so many more. Please, if I have left your name out, it is not intentionally...I *so appreciate very deeply* each and every person who visits this webpage. Those of you who are touched by our story. Those of you are so moved to leave us a message of support and love. Thank you from the bottom of my broken heart.

*The women I have come to know, treasure, respect and care deeply for who have also been widowed. Meg, Janine, Ellen, Barbara, Katherine, Mindi, Cindy and more. Thank you for your incredible support and kindness. Together, we will survive and go on with the hope of finding peace and happiness again.

*The doctors, nurses, technicians, social workers, child life workers, hospital workers, researchers, people who raise funds to find a cure, people who volunteer to help those afflicted with cancer in general and childhood leukemia in particular. THANK YOU ALL!!

*The organizations that exist..."Friends of Karen", "The Sarah Grace Foundation," "The Luke Neuhedel Foundation," "Caringbridge," "Make A Wish," "Give Kids the World," "The Leukemia and Lymphoma Society," "TNT and LTN," "Canoe for Kids," "The Morgan Center" and so many more. THANK YOU ALL FOR ALL THAT YOU DO!! YOU ARE AMAZING!

*My children, Billy and Molly. For giving me a reason to get up each day. For bringing me genuine, deep joy in the face of the unimaginable. For inspiring me each moment of each day to be a better mother and person. For healing my broken heart with your unconditional love. For giving me the opportunity to comfort you and help you heal. For all that you are, for who you are, I thank you both and love you more than words could ever express.

*My husband Roly. To you my love, I will be forever and profoundly grateful. You brought me so much happiness in the 20 years I was privileged to know and love you. You helped me to be the person I am today. You loved me like no-one has loved me in my life and like no-one will again because what we had together was truly as unique as each of us was individually. I am not the same without you but you inspire me to continue going forward. To become all that I can be and to be the best that I can because I know that is what you would want for me. You embodied the term "unconditional love." And I am so deeply grateful that I had 20 years of "something wonderful" as opposed to a longer lifetime of "nothing special." I miss you so much Roly but I carry all that was wonderful about you in my heart each day.

To each one of you reading this, a very Happy Thanksgiving. Cliche as it may be, don't sweat the small stuff. Take the time to realize the blessings in your lives, give thanks and live in the moment. It's all any of us really have.

God bless you all.

With much love,
Donna

Monday, November 21, 2005 6:42 PM CST

Hello everyone,

It has been another busy week in our household. Let me start off by telling you that thankfully, Molly seems to be feeling *much* better this week than she was last week. I can only assume that the heavier chemo she received last week really hit her much harder than it usually does. I am hoping that it is a "blip" not to be repeated any time too soon.

So, to bring you all up to speed...many (mostly good) things have happened in the last few days. On Thursday, my cousin Christine invited us to join her and her kids to see "The Incredibles" on ice. She had 2 extra tickets and Molly jumped at the chance to go. The show was during school hours so Billy would not have been able to go anyway, though he wasn't thrilled at the prospect of being "left out." Well, one new book all about Yu Gi-Oh seemed to quell any jealousy he was experiencing. It also helped ease the little bit of guilt I had about not bringing him to the show. As for Molly, she enjoyed the ice show *so much*!! She squealed and shrieked with delight throughout the whole thing. The premise was that the Incredibles were going to Disney for a vacation but while they were there, the evil character (I can't remember his name now) took over and imprisoned Mickey and Minnie. Of course, the Incredibles saved the day and restored Disney (the Magic Kingdom) back to its "Happiest Place on Earth" status. Molly really enjoyed it because we had just gone to the Magic Kingdom and it was all so familiar to her. She kept saying to me, "Remember when we there!" Overall, it was a great time. Thank you so much Christine and Chris for those great tickets. We loved spending time with Jesse and Savannah and we can't wait to go see the Princesses on Ice with you in January. (Looks like Billy will be getting another Yu Gi-Oh book or something of the sort...he *totally* is too cool and grown-up and masculine to see the Princesses skate around the rink!)

On Friday, I ran around quite a bit in order to get ready for Billy's birthday party which took place on Saturday. The CDs got completed and wrapped up and all the last minute stuff got done. Molly insisted on getting not only a manicure but a pedicure too! Heck, even I didn't get a manicure and pedicure but she did! What a character.

One of the things I did on Friday was go to the cemetery. I don't know why I feel pulled to go there sometimes. I know Roly is not really there but I guess it is a place to be quiet and reflective. A place I can concentrate on talking to him without distractions. A way that I can try to feel closer to him and let myself be honest with my emotions in a private setting. I keep saying it and I wish I felt differently but I don't...I just miss him so much, especially now. Roly's parents came to visit on Saturday and it breaks my heart that their hearts are broken too. No matter how much we have suffered, his mom and dad are suffering so much as well. After all, they lost their child and no parent should ever have to bear that amount of suffering. There is not much I can do to truly ease their pain but I wanted to make sure that when they visited the cemetery, everything looked "together" and as beautiful as possible. So, after I spoke to Roly at the cemetery on Friday, I got on my hands and knees and scrubbed the bronze memorial plate that marks his grave. I cleaned the white cement that surrounds that plate, trimmed the grass and pulled the few weeds that were there. Then I placed a bouquet of small red roses there and at his grandparents' grave next to his. I felt like it was the least I could do for him and his parents. How pathetic that this is something I can do at all.

On Friday evening, my neighbor and friend, Dennis, went with me to Costco where we bought one of the few (artificial) Christmas trees that was left. You know the kind...it comes in 3 sections with all of the lights already attached and opens like an umbrella. The total *easy* way out. The tree was packaged in a heavy, big box and I couldn't have done it without a hand so thank you Dennis. I must say though, it was not much fun at all buying tree without Roly. I kept wanting to ask him questions about the height and the width. I would have driven him nuts asking the same question a bunch of different ways (e.g., "Do you think it will look big enough in our living room...it looks so small here" or "Don't you think our living room could stand a bigger tree...you know we have a lot of ornaments" or "Do you think all of the ornaments will fit on this tree...maybe we should look at the next size up" and so on. I could have made the poor guy lose his mind before the shopping trip was over. Sometimes when I get anxious about something, I look for a lot of reassurance and Roly was always so great about giving me that. He was almost always patient with me when I would get obsessive about something silly. He knew what would make me feel better and so willingly gave that to me without ever making me feel bad. He knew that I was really driving myself more nuts that I was him. It just didn't feel right to make this kind of purchase without him and without engaging in the neurotic ritual that would accompany it. Again, I just miss him so much.

Well, Saturday morning rolled around and Billy was so excited about his birthday party that he could hardly wait. He went to soccer practice in the morning with Chelsea (our nanny) while Molly and I went to her dance classes. In the afternoon, Roly's parents arrived from Florida and the kids were so thrilled to see them. So was I. I have to say that I found myself caught a little off guard though when I saw my father-in-law. As Roly began to age, he began to look more and more like his dad. Sometimes I would tease him about that and say he was becoming his dad's twin. I hadn't seen Rolando (Roly's dad) since the summer. When I saw him on Saturday, for split moment it was like looking at Roly in the flesh and my heart skipped a few beats. For a quick second, I felt almost elated and then immediately, I wanted to burst into tears because as much as Roly resembled his dad, it was his dad and not him. At the same time, it was so good to lay my eyes on Rolando because I felt just a little like Roly was right there with me. Hugging Rolando hello was the closest thing I have felt in a long time to having Roly's arms around me. This must sound so crazy but it's the best way I can describe it. Being with Roly's family is so bittersweet. I love them very dearly and am so happy that they are here. It warms my heart to see the joy Roly's parents bring to our kids. Billy and Molly just light up when they are around their grandparents. It's all good except for the fact that Roly is not here to share in the visit with us. At least, not here the way I want him to be.

Anyway, on to happier notions. Billy's "Survivor" birthday party was a smashing success! All 26 kids who were invited actually came. So, it was a full house at the gym. There were lots of competitions and amazingly, almost every contest ended in a tie (lol)! So there were prizes for everyone (the way it should be). In addition to the competitions, the kids got to go around a circuit of gym equipment which included a balance beam, uneven bars, a trampoline and a huge blow up wall that had to be scaled. Everyone seemed to enjoy that. After the party, my family and close friends came to our house for dinner and to watch Billy open his gifts. He was so happy with everything he got. I think his favorite thing was a game for his Nintendo DS called "Nintendogs." It enables him to have a virtual pet lab that he can train and teach tricks. He really, really wants a dog so I am really, really considering it. I am going to speak with Molly's doctors tomorrow and see if there are any restrictions or concerns about getting a puppy. Here are a few pictures from Billy's birthday party:

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This pizza sure is good!

Billy and my dad with an autographed Bernie Williams photo

Grandma and Grandpa from Florida and the kids

Cake Time

Well, no party would be complete without a bit of chaos. Since there were a few strong guys at the party, my brother suggested that we put up the Christmas tree. Honestly, it was not really what I wanted to be doing in the middle of Billy's party but he was right about needing help to move our stereo equipment and television in order to make room for the tree. Also, with the help of the guys, the new tree went up 1-2-3. So, now I have a tree in my living room with no decorations yet but soon I guess. I had planned to do it over the upcoming weekend anyway so I guess I have a "jump" on it. The joke in our house was that there was always just a little bit of Christmas around at all times. If we were having a barbecue in July, you could count on some Christmas napkins to be on the table...stuff like that. Roly would have really liked this new tree. After the way he worked like a mule to get our old tree up, looking perfect and with enough sets of lights to make me happy...this new one would have put an ear to ear smile on his face. I like to think that he actually is smiling down on us now.

So this week, Billy has his Thanksgiving Feast in school tomorrow and then he is off for the remainder of the week. I will be bringing in mashed potatoes...the instant kind. Betty Crocker is a true friend. Roly's Aunt Judy will be arriving from Florida to spend the holiday with us in the afternoon. We are all soooo happy about that. Aunt Judy is a gem, truly one of a kind. Molly has school on Wednesday then she is off for the rest of the week. We plan to spend Thanksgiving at my brother's home but I hope to update again before then. We could go into NYC to watch the parade at Roly's office with his coworkers in the morning, which is what we did last year but that might be tough for the kids. I will have to think about that. We'll probably just watch it on television and maybe next year we'll get a hotel room and go in the night before to watch the balloons get blown up. Maybe our friends Lisa and Randy and their kids will join us from Rochester. Who knows...way too far off to plan I guess.

Well, that's it for now. Thank you all so much for keeping us in your thoughts and prayers, especially lately. Your messages of support and love are so touching and I appreciate each and every one of them. Over the past week or so, there has been a lot of sad news on the on-line support/information list I participate in...ALL-KIDS. Please, if you can remember to think of these wonderful kids and their families, keep them in your thoughts and prayers, as they could really use that now. They are Keegan, Hunter, Alexia, Libby, Cameron, Donovan, Victor, and Gabriel. Also, please continue to pray for Mike. Thank you all so much.

With love,
Donna

Wednesday, November 16, 2005 7:08 AM CST

We have had a long and exhausting week. Molly's "clinic day" is Tuesday. I believe when I updated last week, we had not been to clinic yet. Well, we went and thankfully, everything was fine with Molly's counts. Every month, Molly has one week where the chemo she receives is "heavier" and more than the remaining three weeks of the month. Last week was Molly's "heavy" week. Because she has grown in height and gained some weight, her "meters squared" (the measurement by which chemo dosages are determined) increased. This caused her chemo dosages to increase as well. I have no idea if the increase in medication is to blame but let me tell you, Molly was *not* herself all week long. She was so tired yet couldn't sleep well at night, probably because of the steroids she was on. (Each month, Molly takes dexamethasone for 5 days in dosages high enough that the steroid functions as chemotherapy. Unfortunately, there are unpleasant side effects to this drug). Molly was clingy, very hungry, weepy, whiny, demanding and just not herself. The increase in Vincristine she got didn't help the leg and jaw pain or constipation that accompanies this drug. Molly complained a great deal about having leg pain this week and she did not even want to dance during her dance classes over the weekend. That is very unlike her. She seemed to "poop out" just a couple of hours after she woke up in the morning and often, she napped at some point during the morning or afternoon.

On Friday evening, the kids and I went to our friends' home for a get together. My girlfriend was hosting a "jewelry party" at her house. For me, that promised to be enjoyable and for the kids, there were friends to play with and fun to be. Usually, Molly *LOVES* to play with Jenna, Melanie and the gang but this evening, she wanted no part of it. She also adores jewelry but she was only minimally interested in looking at what was out. Instead of enjoying herself, Molly was very clingy and just kept asking repeatedly to go home so eventually, when I saw that the evening was not going to improve, we left. I was disappointed to not be able to relax a little but I know Molly really wasn't feeling good. She was asleep within 5 minutes after we got home.

The next day, Molly had it in her head that she wanted to go out to dinner at night. She talked about it all day long so I decided to take the kids to Friendly's. My girlfriend Christine and her daughters joined us, though not before another nosebleed occurred on our way to their house. Eventually, it stopped but after a while, these nosebleeds really cause a great deal of stress! Molly was happy to see her friends in the beginning of the evening but shortly after arriving at the restaurant, she started in again about being tired and wanting to go home. It kept up throughout most of the meal and again, this is so unlike Molly on an otherwise "normal" day.

On Sunday, we had great tickets for "The Wiggles" at the Theater at Madison Square Garden. My girlfriend Lauri was able to get awesome seats...5th row and center! You could see everything so well and usually Molly loves the Wiggles so much. Once again, she was tired and even though she tried to get up and dance a bit, she couldn't maintain her enthusiasm. More than once, she laid down on my lap right there at the concert. Now *that* is really not like her. So of course, with such a significant change in her behavior, I again became worried.

Yesterday, we went to the clinic and Molly's counts were fine...exactly where they should be given the fact that she just completed a course of steroids (which pumps up the white blood cell count). Her physical exam was unremarkable and her oncologist thinks that perhaps the chemo and the steroids just hit her a little harder than usual. He did not seem at all concerned about there being anything seriously wrong and in fact, increased her dosages of oral methotrexate and 6MP, since as I mentioned earlier, her "meters squared" increased. This week, she is still below the 100osages for these drugs but her oncologist wants to increase slowly so that we don't risk Molly becoming neutropenic and having to go off the chemo all together. Today, she seemed just a *little* more like herself, so perhaps those nasty steroids are working their way out of her system. I sure hope so.

On the emotional front, things were not much better for any of us this past week. November 10th marked the 2 year "anniversary" of Molly's diagnosis. Details of that night are still so clear that I don't think I will ever forget them. Last year on that date, I wrote about it all in Molly's journal...our experience over the year and what we had struggled with as well as what we learned and how we grew as a family. This year, I felt so sad and alone on this date. While I know that I am not alone, as I have been blessed with an amazing family and many good friends, on the anniversary of Molly's diagnosis, I felt so profoundly lonely that my heart literally ached in a physical way. Only Roly really knew every detail of that night as I do. He and I shared our pain and our fears that evening in a way that only parents can know and share. How I miss having him here to talk about these thoughts and feelings. How I miss having him here...period. How I wish I could just have him back with us here, even if for only a moment. I am so sad about the impossibility of this.

I am not the only one so sad about this. This week, Molly attended the birthday party of one of her little friends from the Morgan Center. Gia turned 4 and celebrated at school with pizza and cupcakes. Gia's dad was there, as well as her mom and grandmother. Molly has always been fond of Gia's dad but I think seeing him with Gia at the party really brought up so many intense feelings for her. Toward the end of the party, right in front of everyone, Molly had a huge, genuine *meltdown*. She began to cry and when I went over to see what was wrong, she said that she missed her dad. Then the big, heaving sobs came and next came yelling and screaming, "I want my daddy!! I want Roly!! I miss him so much that I just can't take it!!" And it went on and on for a bit like that. All of the parents and teachers had tears in their eyes and my heart was breaking just listening to this little child's profound pain. No child should have to feel that much pain. Molly has been through enough in her short life. She has been asking me "why" her dad died, "why" he can't come back, and the like and of course, I have no satisfying answers for my daughter or my son or myself. It is so terribly frustrating.

Billy too is suffering. His birthday is November 25th and of course, this will be the first birthday he celebrates without his dad. His party is set for this weekend at a local kids gym where the theme of the party will be "Survivor." How ironic...Billy is truly a "survivor" of so much loss and pain. Like the TV show, the kids at the party will be split into two teams. Each team will be given its own buff and the kids will be presented with various challenges to win rewards. It sounds like it is going to be a lot of fun and though I know Billy is really looking forward to it, I know that he is wishing his dad was here to share in it too. Unlike Molly who really verbalizes what she is experiencing and shows her feelings in a fairly direct way, Billy suppresses his pain and instead, "acts out" in little passive/aggressive ways that tell me his is angry and sad. Thankfully, the children's bereavement program at the Center for Hope has started again. Last year the program seemed to help the kids a good amount, even though they only attended for a short time. I am hoping that with more time this year, their personal journeys through this profound grief will be less rocky and more supported than before.

As for Billy's actual birthday which is the day after Thanksgiving, I purchased tickets to see the Christmas show at Radio City in NYC. Afterward, we will have an early dinner at Mars 2112, a themed restaurant near the show. Before we go home, we plan to visit the big Toys R Us in Times Square. It will be quite crowed in New York that day but Billy loves this show and it has been kind of a tradition for our family. I think the only years we missed it were the last two and that was because Molly was too ill to attend. I will be taking Billy and Molly, along with Billy's best friend from school, Michael. Also, my mother, my mother-in-law, Roly's aunt Judy and our baby-sitter, Chelsea will be coming too. We will all take the train in that day and I know that won't be easy for everyone but I think it is the right thing to do. Traffic will be too intense to drive and the cost of a limo is outrageous. If you live near NYC, you have to rely on mass transit to get you there and around town sometimes. I don't want my children to fear the train. I don't want them to avoid doing so many wonderful things offered in NYC because of what happened to their dad. Molly already went on the train this weekend with me and she handled it just fine. Being older, Billy's experience may be different so I plan on discussing it all with him ahead of time so that any questions or concerns he has can be addressed before they overwhelm him. I will be keeping my fingers crossed and saying my prayers that all goes well with the commute in and out of the city that day. (For our praying friends out there...any prayers you would like to send our way for this would certainly be appreciated!)

As for me, it would be fair to say that I have had a tough week. I am tired and a bit overwhelmed. Caring for Molly when she is "off" can be really draining and of course there is the worry that goes along with her behavior that can exhaust one. Planning and executing Billy's birthday festivities is a big task that Roly always helped with. Most of it is now on my shoulders and there is a lot to do. There is not only the kids' party at the gym but as usual, I am having my family back to the house after for dinner. As some of you might remember from Molly's birthday, each year as party favors Roly and I always made a music CD filled with the birthday child's song picks. Well, I figured out how to make and copy Billy's actual CD but making the labels is another story. After trying to do it on my own for many hours, I finally asked my cousin Christine and my friend Katie for some help. I know it will get done but it is yet another thing on my "to do" list.

Last week, I had a couple of doctors appointments for myself and thank God, they both went well. I went to my regularly scheduled endocrinology appointment and got a great report. Even though the thyroid cancer I had was almost 9 years ago and I am truly not worried about a recurrence, it is always good to hear that everything is fine. I also had a mammography and sonogram that turned out to be fine too. However, I had a lot of anxiety for this appointment because I felt a "little something" in one of my breasts. Just the sheer *possibility* of it being a serious concern almost put me over the edge. In Long Island where I live, 1 in 9 woman will get breast cancer. That is a terrifying statistic. What I felt turned out to be regular, glandular tissue and the doctor was confident it was nothing more. I had three small fibroid growths in my other breast but those are not malignancies and will never become such. So a big sigh of relief with this. And a very big *THANK YOU* to my friend Patty for spending her day off with me at a doctor's appointment. Patty, you are such a good friend and I really appreciate you doing this for me.

For me, Billy's birthday signals the start of the holiday season and that too is overwhelming me right now. The thought of going through Thanksgiving, Christmas and New Years without Roly for the first time is so sad. I can't even imagine Christmas morning without him. Also, Roly did a lot of decorating and he always made our home look so magical. I know that I won't be able to do all that he did myself, as I am just not able (or willing) to do it all...like get on the roof to put up Christmas lights, drag the tree out from the crawl space and put it together on instinct instead with the use of directions, etc. While I know that people will help me, I truly don't want to impose as everyone is busy this time of year. Heck, even before Molly had cancer and Roly died, this time of year was always more intense and stressful than other times. I am struggling to find a balance between keeping our traditions alive yet creating some new happenings so that it is not *all* about Roly's absence this holiday season. I just haven't figured out how to do that yet, but I will. I also want to minimize the craziness that can go along with holidays and keep the focus genuine and real on what this season is truly all about.

Well, that is the news for now. I am going to do my best to put last week behind me and look forward to a better week for us all this week. As always, I thank you all from the bottom of my heart for keeping my family in your thoughts and prayers. You are all so wonderfully supportive and that means a great deal. Also, thank you for visiting Keegan's page and Mike's page to offer them your support and encouragement. You guys are really great. I am sad to report that two more of my on-line friends from ALL-KIDS, an incredible support group and information source for parents of kids with ALL, have children who have relapsed. Alexia and Libby are terrific kids. Please keep them and their families in your prayers. I know they will appreciate it so much. Also, my dear friend Apryle's little boy, Victor is having a very tough time now. Victor relapsed a while back and received a transplant. This was not an easy process at all and now he is struggling with the after effects. His mom is a very positive person and a terrific advocate for her son. She is in inspiration.

OK, that is really it for now!! Thank you all again for *everything* you do, from the notes in the guestbook, to cards and surprises in the mail, to the prayers and good thoughts and the list can go on! Hope you all have a great week.

Love,
Donna

Tuesday, November 8, 2005 8:02 AM CST

Hello everyone,

Every night I say, "Tonight I am going to sit down and update Molly's page" and then, before I know it, it is so late that I cannot even keep my thoughts straight to type coherently. Last night was no different. So this morning, before I go out to the clinic, I wanted to give at least a quick update to let you all know that everything is truly fine, just hectic and busy.

Here's the "Cliff Notes" version of the happenings around here. Well, as you all know, last week on Monday, we celebrated Halloween. Each year, the neighborhood kids trick-or-treat in a large group. My kids just love trick-or-treating with their friends. The prospect of "free candy" just thrills Billy to no end and Molly has to be part of the action. After getting more candy than either of them could eat in a year, we decided to pack it in and head to my brother's for pizza and more Halloween fun. I have to say, I was happy to get a couple of little boxes of Junior Mints out of the kids' bags but I don't think either child got one 100,000 Grand Bar. I only eat them on Halloween after "stealing" them from the kids so I was a little disappointed that they were a "no show" this year. Oh well, there's hope for next year!

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Billy and Molly all set to get some loot.

On Tuesday, Molly had her clinic appointment. Though everything turned out to be OK, her counts got me more than a little concerned initially. She had a white blood count of 10 (which is the high end of normal for a child *not* on chemo). Molly had not taken steroids which could have accounted for a rise in the white count. She didn't seem ill either, which could also explain why the WBC was up so high. So, with no obvious reason for the increase, being the mom of a kid with cancer, my mind wandered to the dreaded question..."Do you see any 'abnormal' cells or blasts"? A relapse can also account for a high white count. Thank God, nothing abnormal was apparent and the doctor looked at two separate slides under the microscope to be sure. So, he said it was in all likelihood something viral that she was either getting or getting over and we would just keep an eye on her. Her chemo dosages were kept the same and we were told to come back in a week. So, I felt OK leaving and continued along on the week.

On Wednesday, Molly went to school and still seemed fine. On Thursday, we had a big, fun day. Molly and I went with our friend "Miss Nancy" (Molly's teacher) and her daughter Morgan to NYC to the American Girl Place. Those of you who have little "girly" girls know that the "American Girl Place" is *the* place to be for an afternoon of fun. Getting there was no small feat...there was tons of traffic and no ride to New York would be complete without a profuse nosebleed requiring that we pull over to the side of a busy road so I could pinch Molly's nose while trying to clean the blood off of her poncho with a wipe. Eventually, the bleeding stopped and we got back on the road. We made it in the nick of time for our lunch reservation in the American Girl cafe. Surprisingly, the lunch was quite good! It was really cute how the dolls get seated at the table and are given their own little china cup and saucer. The place was decorated in bold black and white stripes with lots of hot pink splashes thrown in all over.

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Molly all set for lunch

Tea Time!

After lunch, we went through the many floors of the store and looked at all of the dolls and their accessories. Of course, Molly wanted everything but we settled on a few things and will put some others on her Christmas list for Santa to bring. She just *loves* little things, like hair clips, little brushes and little mirrors. Sometimes I wonder if her "obsession" with hair items is some residual post-traumatic stress from losing her hair last year! Anyway, we got the "hair care kit" for her "Molly" doll and a few items for her "Bitty Baby" doll and she was thrilled. However, she also complained a lot of being tired and her legs hurting. So, the complaints of the fatigue and leg pain coupled with her high white count two days earlier and the profuse nosebleed on the way in got me worried all over again. It's so unfair that when you take your child to the city and she is walking more than normal and complains of leg pain, a cancer mom doesn't just get to think, "Boy, she is tired and going to sleep well tonight. What a big day we had." Instead, a cancer mom thinks, "Oh God, I hope this is not a sign of relapse. I hope her marrow is *not* packed with blasts and that's why her legs hurt."

Well, to relieve my concern, I brought her back to the clinic on Friday and her WBC was down to 7.0. Though it was still higher than one would expect, at least it was going in the "right" direction and the doctors felt confident that she had just been fighting some virus and it was probably why Molly was more tired than usual. Also, all of the vincristine she has had has caused her legs to be a little weaker than normal so perhaps the walking in the city really did cause her to feel some pain and discomfort. No matter how you look at it, she was given the "All Clear" and that is all any parent of a kid with cancer really wants to hear. Today we return to the clinic to start a new cycle of chemo. Later on, Molly will get more vincristine, which we all hate because it really causes her body to hurt and constipates her. Also, she will begin on steroids again and she will receive her monthly infusion of an IV antibiotic called pentamidine, which is given prophylactically to stave off pneumonia. It will probably be a long day in the clinic but we will armed with activities to keep us busy.

Over the weekend, we had the pleasure of attending our good friends' daughter's Bat Mitzvah. Elana was so beautiful and poised. She did a wonderful job in the Temple and the party was just fabulous. Neither Billy nor Molly stopped dancing all night long. Molly had the teenage girls wrapped around her little finger and she even got this hip-hop DJ to copy her doing the 5 ballet positions on the dance floor! That was just too funny. Elana's mom, Sheila is one of my closest and dearest friends. She regularly donates blood to Molly and took care of her before she was diagnosed with cancer, since she is also Molly's pediatrician. She is a *wonderful* human being and I am very grateful for her friendship and support. Elana is following in her mother's footsteps as she grows into a compassionate, lovely young woman.

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Having a great time at the Bat Mitzvah with all of Elana's friends

Billy dancing the night away

Though the Bat Mitzvah was wonderful, it was the first big formal affair I attended without Roly. It was strange getting dressed up and not having Roly by my side. I needed my mom to come over just to help me zip my dress and get some jewelry hooked properly. The little things we take for granted. I missed his company, as I do every day but was distracted by the kids.

On Sunday, Billy had a soccer game and he scored a goal! He was so happy about that. In the afternoon, we went to my brother's to celebrate my niece, Emily's birthday with the family. The kids always enjoy being with their cousins.

I got an e-mail from my job in Baldwin asking me if I wanted to do some per diem evaluations for them. I thought about it and agreed to do so. I plan to go back to work full-time (unless a part-time position opens) in September 2006. I don't know how I will manage working full-time but I need to work in order to maintain my benefits and because of finances. My job in Baldwin has been so supportive and caring during all of the crises my family has faced so at least I will be returning to a place where I am truly happy at work. Sure, any job has "nonsense" that goes along with it but my coworkers make any "nonsense" fade into the background because they are all so outstanding. I think working on a per diem basis now will be a good way to "get my feet wet" again and get caught up on changes in test instruments, etc. I am a little anxious about it because every time I have tried to go back to work even a little bit, something major has happened to stop it from happening. Let's hope this is a new beginning that will be *good* for us all.

All of you who follow our page are so amazing and supportive and I cannot thank you enough. I have to say that I have really made some new, true friends through this page and I am so grateful for that. Now I want to call upon you to do something for two other caringbridge families. My on-line friend Audra has a beautiful son Keegan who has ALL like Molly. The "good kind," with all of the good genetic markers and good prognostic indicators. Well,Keegan just relapsed in his central nervous system and we are all devastated for his family. There are treatment options and certainly there is hope for a full, complete recovery but no matter what, Keegan is about to embark on a very difficult road. Please, if you can, stop by his page and leave his family a note of encouragement and support. You wouldn't believe how sometimes a note from even a stranger can really bring comfort when you're suffering and afraid.

The next request is for an incredible family I "met" shortly after Roly died, the Machinskis. Mike, the dad, has been struggling with advanced Hodgkin's lymphoma for a while now. He underwent aggressive chemo and relapsed early on. Then, he underwent more aggressive chemo and had a stem cell transplant, which caused his family to relocate to another part of the country for a while. Mike just found out that he relapsed again and the cancer is in a number of spots in his body. Mike is married to a wonderful woman, Becky and he has three beautiful little girls. Please visit his page and leave him and his family a note of support and encouragement. These people have been so kind to me, even with all they have been going through. They are understandably down now and really need others to help them rally back so they can continue to fight for a full, complete recovery. Thank you all so much from the bottom of my heart for this.

Talk to you all soon.

Love,
Donna

Sunday, October 30, 2005 9:36 AM CST

Hello again,

Yesterday marked the 7 month anniversary of Roly's death. How strange to write of it as an "anniversary." Anniversaries should be things to be celebrated...achievements, events that mark the special and joyful moments not the moments of great pain and loss. Soon, it will be the two year "anniversary" of Molly's diagnosis. At the risk of sounding self-pitying, I must admit that over the past couple of years, we have had our share of pain and loss. How I wish that there was some "cap" on the amount of suffering a family could endure. How I wish that there was a quota, that somehow God had a record book and would look in it and say..."Guarton...no more pain for them. They are exempt. Be sure to send only peace and happiness their way." Of course, this is a silly notion. I don't believe that God is responsible for our pain and I don't believe that we are so passive that it is up to Him to create happiness in our lives. I know we don't have a "free pass" on future suffering but I sure wish we did!

I'm not really a "preachy" type of individual with regard to my religious beliefs and views but I feel compelled to share this with you today. People who do not know me well sometimes ask "how I'm doing with God." They want to know if I am "angry" with him. I am always so surprised by that type of question. God and I are just fine and no, I am not angry with Him. Sure, I *am* angry that Roly is dead and I am *furious* that my kids don't have the benefit of their dad's love and presence while they grow up but Roly's death is *NOT* God's fault. We are not puppets on strings and while things often happen that are out of OUR control, it does not follow logically that then it must be owing to God's will. I believe that when God gave humans the gift of free will, it created an environment of complexity that is almost impossible to comprehend. I don't know why Roly died and there is nothing or no-one who will be able to answer that for me until I myself have the honor of meeting God and asking him myself. No psychic or medium will satisfy me. No book or theory. No priest or pastor. This is something that I have accepted as being unanswerable on this earth...incomprehensible to me in my flawed human state. So instead of focusing on the "why" and entertaining a million and one viewpoints and theories, I have chosen instead to focus on what I do know for sure. I know that God loves me and my kids and our family beyond measure. I know He would *never* harm us. I know He is there to hold our hands, to comfort us and to carry us when necessary. I know that He helps us to go forward not only through His direct, personal love for us but through all of the faithful people who read this page, who know us and care for us...who pray for us regularly. While my life will always contain sad anniversaries that weigh heavily on my heart, I am hopeful that the future will also hold goodness, peace and happiness for us all. I am hopeful that there will be good times again that will mark the start of new, happy anniversaries. Truly, while I have no *true knowledge* of what the future holds, I am not so inclined any more to spend lots of time trying to figure it out. How Roly and I worried about Molly and the outcome of her illness! We spent lots of time anxious and afraid and then, in literally a few seconds, Roly's life ended and ours became changed forever. We feared something awful, and something awful did in fact happen but not the thing that we wasted our time and energy worrying about! I am not saying that I will no longer be afraid or fall into worry...as a human being, I know that I will. But I guess that I am saying that I am going to *try* not to dwell there. To remember that worry and fear over things out of our control only rob us of energy that could be otherwise used constructively. I will make the conscious choice to focus my energy on those people and things where I can have an impact. I won't even say on those people and things that are within my control because I know only too well that really, the only thing within my control, to some extent, is myself. But I do believe that we can influence one another and I only hope to "influence" in a way that is healthy and good. And while I certainly did not need my child to get cancer or my husband to die in order to "appreciate" life and the fragility of it, I certainly do appreciate each good moment and try to consciously, actively savor it because we don't know what the next moment can bring. Well, I guess that's it for the "preachy stuff."

As for the day to day happenings around here, as usual it has been busy. Parents' Visiting Morning at Billy's school was really nice. He did a *GREAT* job with his part of Wilbur in the Charlotte's Web play the kids put on. In fact, everyone did a fabulous job. After the play, the kids and parents painted "carnival" pumpkins and then planted a few bulbs so that the school will look even more beautiful in the spring. My mom came along and Billy was happy that she did. Of course, in a setting such as "Parents' Visiting Morning," one can't help but feel the sting of the loss of Roly a little more acutely. He would have so enjoyed seeing Billy perform. He went every year to this event. Though Billy didn't say much about him not being there, I know he felt it. Here are a couple of pictures from this day:

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Billy hard at work

Billy and me with his pumpkin

Miss Molly has been very busy herself. She had me laughing my head off the other day when she put some of her play make-up on and told me she was going on a "date." "Oh really?" I asked. "With whom"? She replied, "My 16-year-old boyfriend Sean. He lives in Central Park. I am taking the train to the city and then we are going out to eat macaroni and cheese and lobster." Let me tell you, having a young nanny has a price!! Nothing gets by Molly. She hears Chelsea on the phone with her friends and she thinks she is one of them! I am so in for it when she is older.

Molly really enjoyed her Halloween party at school this week. All of the kids from the Morgan Center dressed up and trick-or-treated down a long hallway where the parents were seated with bags of candy. It was so great they could do this because some of them won't be able to do it on Monday. The kids picked out pumpkins and decorated them, had a visit from the Safety Witch, who told them all about safety on Halloween and had a great party complete with pizza, cupcakes, chips and of course music and dancing.

Yesterday, Molly had another Halloween party at dance class. She is taking two classes. One is ballet and tap and is with a group of girls her own age and the second class is jazz and tap and is only with one other child. The other child is Morgan, my friend Nancy's daughter from the "Morgan Center." They will be doing their own special number and it promises to be just too cute.

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Molly and Morgan at dance class dressed up in Halloween costumes

In the afternoon yesterday, Billy had a big Halloween party at his school. The PTA puts it on and it is really incredible. The decorations are unbelievable and there is so much for the kids to do. This year they had a horse drawn hay ride, a DJ, sack races, musical chairs, a "haunted house," an area for scary movies and a BIG blow up slide. It was so much fun. Siblings were welcome so let me tell you, Molly had as much fun as Billy. Today, Billy has a soccer game and then we will gear up for trick-or-treating tomorrow in our neighborhood. That is always fun.

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Molly and me on the hay ride

Billy at the sack races

Hope you all have a fun and SAFE Halloween. Trick or Treat!

Love,
Donna

Wednesday, October 26, 2005 0:07 AM CDT

Hello to everyone again,

It certainly has gotten cold over the past few weeks here in New York. To me, it seems like warm, beautiful weather was here just a minute ago and then it was gone in a snap of a finger. It has been cold and rainy...really rainy. The weather has been the type that sends an uncomfortable chill into your body that is hard to shake off even with a nice, warm cup of tea or a hot, steamy shower. It makes me miss Roly even more, if that is possible.

Each sensation brings a flood of memories and feelings. On cold evenings such as this one, I would slide into bed, at least an hour or so after Roly went upstairs. I am much more of a night owl than he was. He got up very early to take the train into NYC and he was a person who needed his rest so often, he would turn in before me. By the time I got into bed though, he had warmed it up substantially and it was nice and cozy. I would snuggle up right next to him and even in his sleep, he would put his arm around me and draw me close, right next to him. It was such a safe, secure and lovely feeling. I miss that so. So tonight, instead of snuggling next to my husband, I am wearing the soft, fuchsia plaid PJ's he got me last Christmas. When I opened the lavish box from Victoria's Secret that Christmas, I was picturing some slinky nightgown Roly had picked out for me. Instead, I had a good laugh when I saw that the beautiful box with the deep pink tissue paper contained two pairs of flannel PJ's! Roly knew me so well! And truly to him, I was just as beautiful and attractive in flannel PJ's as I was in a slinky nightgown. That's the thing when you truly love someone. You don't "see" their outsides but rather you "see" them for what is in their heart, mind and soul. Long ago, I had stopped looking at Roly in a superficial way. If I was asked to describe him, I don't even think it would occur to me to talk about his physical attributes. Instead, I would have told you about how generous of a person he was. How he had a great, sarcastic wit and could really make me laugh. How clever he was and how adept he was when fixing something. How he was totally devoted to his family and how he loved and adored his kids. How he was a loyal and true friend. How he made me feel loved, special, important and worthwhile. I miss him so much.

The kids are doing OK, though they continue to struggle with their grief and how they understand the loss of their dad. When we went to Florida recently, I told Billy that there was going to be a wonderful surprise for him when we got to our hotel room. (My mother-in-law was there already and would be joining us on our trip.) Billy got excited and then paused. He looked at me and asked with a heart full of hope and eager anticipation, "Is it daddy? Is he there"? It blew me away. I mean I know he *knows* his dad is in heaven and not coming back yet still, his almost 9-year-old mind is hoping beyond hope for some miraculous occurrence. Telling him "No", his dad would not be there was hard. And Molly...she just told me the other day that she is going to wish very hard for her dad to come home. She told me that he will come home because "dreams do come true." "Cinderella said so." Great. Now I have the pleasure of telling her not all dreams come true and you can't always believe your favorite princess. No kids should have to face these issues. It's just not fair or right.

In addition to the rain, this past week was filled with lots of activities. Billy continues to bowl and play soccer. He decided however that the drums are not for him at this time. That was a hard decision because I think he really wanted to play them to honor his dad who was a terrific drummer. But I give Billy lots of credit for being able to know at such a young age when he is doing something for the "wrong" reason. I told him that if he is not enjoying the drums, he does not have to take them. He was worried that maybe his dad would be mad but I was able to reassure him pretty easily that Roly would never be mad at him for something like that. Billy said that he might want to try drum lessons again when he is a little older and that is fine by me. On Thursday, it is Parent's Visiting Day at Billy's school and his class will be putting on Charlotte's Web. Billy is very excited about that. As for Molly, she went to dance class on Saturday and as usual, she *loved* it. The girl never stops dancing and singing. She returned to the Morgan Center and that is always great, as she really enjoys school. She played with her cousins a little bit. Today, we had a clinic appointment and all of her counts were good. She did have a couple more nosebleeds but so far, her hemoglobin is holding. Her doctor kept her on the same dose of chemotherapy for now.

With the recent change in the weather, both kids were *very* excited to receive the most beautiful, handmade quilts from a woman named Lisa Peterson. Lisa follows our webpage and made these incredible coverings for both Billy and Molly. Here are a couple of pictures of the kids enjoying these wonderful quilts. (In case any of you are wondering, these are not the quilts being made from Roly's clothing. Those won't be ready until perhaps Christmas).
Lisa, we cannot thank you enough for these amazing gifts. They will be treasured for always.

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Billy and Molly wrapped in their quilts

Billy loving his quilt

Molly giggling like crazy as she wraps herself up in her quilt

Well, I hope you all are drier than we are and I hope you have a peaceful, happy week.

With much love,
Donna

Wednesday, October 19, 2005 4:54 PM CDT

Hello everyone,

We are home from the trip to Disney we took this past weekend and we had a really nice time. Before I tell you all about it though, I wanted to share that Molly is doing well (knock wood) on the medical front. Her ANC and white count are back up to a nice number, thanks to the steroids she just completed and her platelets are back up by 200,000 points. Even her hemoglobin is better. This week, there have been no nosebleeds and I am soooo grateful for that. Despite the steroids, her mood has been really good overall and her behavior in Disney was really excellent. She ate a good amount but she was not ravenous. Usually when she is taking dexamethasone, there is no stopping her when it comes to eating. Last month, she actually ate about a dozen egg whites in one sitting. Today, she received a flu shot, though we are not sure of her ability to mount a response to the vaccine. It won't hurt her though and we can only hope and pray that it helps her. She hates getting injections and today was no exception. Once it was over though, she was fine. I did however have to promise her some shrimp cocktail if she sat still for it.

So, now for some details about the trip. I have to admit, I was a little nervous about what kind of trip it was going to be when our plane got delayed for over 3 hours on Friday evening due to bad weather in NY. We didn't actually board the plane until almost 10:00 pm and that is not a good thing when you are traveling with three 8 year olds and one four year old. (Two of the kids were my girlfriend's. Yes, she came too). We got through the flight and the airport in Florida only to wait on a long line to catch a bus to Disney. By the time we actually made it to the hotel and checked into our rooms, it was after 2:00 am. For my kids, there was a great surprise waiting for them in the room...their grandmother who lives in Florida. She got a ride to Orlando with friends and needless to say, Billy and Molly were *THRILLED* to see her. So, my kids didn't go to sleep until after 3:00 am but they were still up and ready to go to MGM the next morning. I kept telling them to go back to sleep but was only able to hold them off until late morning. So at about 11:00 am, we were ready to go to our first theme park.

I have to say, Disneyworld in October is really very nice. After 8 straight days of torrential rain on Long Island, we were so happy to see the sun. The weather was warm and sunny, in the 80's but not uncomfortable. The parks certainly had a good amount of people in them but it was not unbearably crowded. For us, MGM was a good choice because it had things for kids Molly's age as well as for the older kids. There, Molly LOVED the Playhouse Disney show and the Muppet 3D movie. Billy and his friends really got a thrill riding the Aerosmith Rockin' Rollercoaster and Star Tours. (Actually, Molly really liked Star Tours too! She is a little daredevil. The faster, the better for her). We ended our day at MGM by watching the evening show, Fantasmic. That was great and we were back to the hotel by 9:30 pm.

The next morning, we got up early and went to the Magic Kingdom. We were there when it opened (a first for my family) and stayed until early afternoon. The kids got to do some big rides like Splash Mountain (Molly's favorite) and Big Thunder Mountain Railroad as well as a bunch of rides in Fantasyland. Molly loved "It's a Small World", Peter Pan and the Winnie the Pooh ride. We headed to Toon Town where we got a bunch of autographs and we had lunch at the Liberty Tree Tavern in Liberty Square. I have to say, the food was really quite good there. We did the Disney dining plan and for any of you going soon, I would definitely recommend doing it. It is priced very reasonably and you get a good amount for your money. You can check it out at the Disney website if you are interested. Anyway, we went back to our hotel to rest in the afternoon and then returned at the start of "Mickey's Not So Scary Halloween Party". This event was just terrific! The park was decorated and lit beautifully and there were some special events, like trick or treating (Billy's favorite), an awesome Halloween parade and the best fireworks show I have ever seen at Disney. A good amount of rides were open and so the kids went on Space Mountain, Buzz Light Year, Stitch�s Great Escape and more. At almost midnight, we all went on the Haunted Mansion ride, even Molly. That was a lot of fun and Molly was not scared at all.

By the next morning, we were all pretty tired but still, we went to a character breakfast at the Grand Floridian Hotel. That was fun. The kids all loved meeting Alice in Wonderland, the Mad Hatter, Mary Poppins, Pooh and Tigger. When breakfast was over, we went back to our hotel and checked out. Then, since our flight was not leaving until after 7:00 pm, we hung out at the pool, had lunch and went to the arcade. Before we knew it, we were heading back to the airport and were back on a plane to NY. We didn't actually arrive home until about 11:00 pm Monday night so we are all still pretty beat. But we had a really fun time.

As great as the trip was, of course it was not the same without Roly. I surely missed him and I know his mom and the kids did too. However, I am really glad that we went because being in Disney now triggered so many memories from the trip we took right before Roly died. I know it's only been 6 months since he's gone but to a small child, 6 months might as well be a lifetime. I was comforted by how much both Billy and Molly remembered, especially Molly since she is so young. It was also good to know that I could go there again without falling apart. Though I would have somehow gotten through the trip if I was totally on my own, I am so grateful that I didn't have to be by myself. I so appreciate my mother-in-law Nora for all of her help. Honestly, the trip would have been much more difficult and stressful had her capable and caring hands not been there to help me. So Nora, thank you so much for coming and for all you did to help the trip go smoothly. I am also really grateful that we were able to do this with my girlfriend and her kids. That made everything much more fun and special too. Here are a few pictures from the trip:

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Well, I guess that is the news for now. Before I say goodbye for today though, I have to mention how deeply touched I was to arrive home to some very special treats for the kids. One of our very kind on-line friends Sherry, sent a little care package that was a huge hit. Billy just loved those Pokemon cards and Molly�s new favorite game is Go Fish. Thank you so much! Also, a wonderful organization called Project Angel Hugs sent an adorable Halloween decoration made by one of its teen angels, Caylee. Molly just loved that. Thank you!! I am continually amazed by two incredible people, Kathy and her daughter Katherine who for the longest time now have sent Molly each week *beautiful* handmade cards to cheer her up. Even while these two have been under construction, they still send Molly well wishes and great stories! Thank you both from the bottom of our hearts. Another person who always checks in and sends great cards and treats is our friend, Mrs. Pam from the Preschool Pen Pals. Mrs. Pam, you are one of a kind! Finally, Billy was completely blown away by the kindness of a very compassionate woman named Elizabeth who works at the Nickelodeon Animation Studios in California. She read how much Billy *LOVES* the cartoon, The Fairly Odd Parents and she had the creator of the show autograph a poster for Billy. He was so excited and said that none of the kids at school would even believe it. Of course, he wants it framed so he can hang it in his room! Thank you so much Elizabeth for your kind note and for going out of your way for kids you have never even met. I don�t even really know how to convey to all of you who follow this page my deep gratitude and appreciation for all that you do. You are an amazing bunch of people. What you do really helps to remind us all that we are not alone. It helps to know that there so many people who care and are praying for us.

Well, I hope you all have a great week. With a little luck, I will be able to update again before a whole entire week goes by!

With much love,
Donna

Wednesday, October 12, 2005 8:55 PM CDT

Hello to all,

I cannot believe that an entire week got by me without having the opportunity to sit down and update but it did. It has been kind of crazy and hectic here this week.

Let me begin by updating you on Molly. Thankfully, her counts have rebounded...for the most part. Molly's white blood cell count has improved enough for her to begin taking chemo again. Her platelets however have been dropping by about 100,000 each week for the past 2 weeks but they are still in the normal range and the doctor does not seem concerned at all about that. Molly missed an entire week of chemo and that never makes me feel great but at least she is somewhat back on track now. Once every month, Molly receives the following medications...IV Vincristine (which causes leg and jaw pain as well as constipation), dexamethasone for 5 days (a steroid that causes some pretty significant mood swings, a ravenous appetite and a need for *less* sleep), IV pentamidine (an antibiotic given to try and protect Molly from certain strains of pneumonia), oral 6MP and oral methotrexate (both are chemo drugs that impact on the blood counts but other than that, have not really bothered Molly much). The 6 MP is taken every evening on an empty stomach and the oral methotrexate is taken once each week, also in the evening on an empty stomach. However, Molly does not take oral methotrexate once every three months because at that time, she receives the drug intrathecally (which means that it is administered via a lumbar puncture and is injected directly into the spinal fluid). In addition to these medications, Molly takes Zantac to help protect her stomach from the harshness of the steroid and she does "mouth care," which involves "swishing and swallowing" oral nystatin and rinsing the mouth with a very minty, medicine-tasing rinse called peridex. These things are done to protect the sensitive mucous linings in the mouth and throat from developing sores because of the chemotherapy. It is a lot of medication to manage and the dosages of these medications typically vary week to week, depending upon Molly's height and weight and her weekly blood counts. Yesterday, after being at the hospital all day long, Molly began her monthly cycle of all of these medications. Thankfully, she is a trooper and is quite cooperative with taking them, despite the vile tastes of the oral ones. Overall, she seems to be feeling well and her disposition has been good, though it won't be long before her alter ego emerges thanks to the steroids. Unfortunately, Molly's nosebleeds are continuing. They are not "terrible"...only one was really profuse but they are annoying and upsetting to Molly. She already had her nose cauterized but it hasn't helped much. I am just hoping that somehow, someway these will stop occurring.

In other areas, Molly is doing really well. She *LOVES* going to school at the Morgan Center and when she is able to go, she totally enjoys her dance classes. Now that her counts are up, I know that she will be eager to play with her friends. Playdates are always a treat for her.

Overall, Billy has been doing well too. He is getting good grades in school, though he complains about doing his homework. He is involved in a basketball club at school and is on the student council. His class just finished reading Charlotte's Web and in 2 weeks, it will be "visiting day" for the parents. Billy's class is going to put on a short play based on Charlotte's Web and Billy will be playing the part of Wilbur (or Wilburt as he likes to call him)! He is pretty excited about that.

As for me, I hadn't been feeling too well last week but am better now. I had a series of really awful headaches that left me barely able to do my normal activities. Perhaps it was my sinuses or owing to some changes in the weather. Maybe it was just stress. Whatever it was, it is better now and I am grateful for it.

I had mentioned a number of entries ago that I am having Roly's clothing made into quilts for the kids, myself and some family members. Each of the quilts will have photos on them. The quilter, Lynette at Quilt Creations is going to scan the photos on to fabric that will be incorporated into the quilts. I cannot begin to tell you how hard it was to sort through literally thousands of photos to select the ones I wanted for this project. With each photo, there were so many memories and it caused so many conflicting feelings. While I was comforted and happy to remember these good times, almost immediately came pangs of profound sadness and loneliness for my husband. I just miss him, plain and simple. I miss all that we had in those pictures. I miss "silly hat days" when we would all wear crazy hats around the house. I miss family days at the zoo and local animal farm. I miss times when we would all go to the park or beach together. I miss fun days with friends and relatives. I miss it all. It makes me so damn mad that we can *never* go back and reclaim what we spent our lives building...a happy, cohesive, imperfect but loving family of four. Emotionally, I feel a bit drained from getting everything together from the clothes to the pictures for the quilts but I am relieved that it is all in Lynette's capable and caring hands.

This past week I was presented with another dilemma. Roly's car (a 1992 Honda Accord) finally broke down so much so that it was not worth fixing. The baby-sitter had been using the car to run errands and drive the kids places on occasion. At this point in our lives, I need the second car because if I am occupied at a place with one child and the other needs to go someplace else, I need a safe means for the sitter to get him/her there. So, my choice was to buy another used car or to get a new car and let the baby-sitter use my car, which is now 6 years old but still in very good condition. After a lot of careful thought, I decided to buy a new car and keep my car as the second. It was so hard to make this decision without Roly's input and having him to help with the research, test drives, etc. Thankfully, my brother Van went with me to negotiate a deal and help me. I am sure I could have done it alone but it was so much better to have another person there to bounce a few things off of. I ended up with a new minivan...not glamorous but it really meets our current needs. Now, if I go someplace with my parents or friends, we can all fit into one car and I don't have to drive alone while I follow someone or they follow me. More importantly, now I know no matter what car the kids are in, they are in a safe vehicle that meets the current automotive standards. Although Roly was never "in love" with his car, it is going to be difficult to part with it. It was something that was so obviously his. Just like with the pictures, I was both comforted and saddened by seeing it. Most of the time, I asked the nanny to park it around the corner so when I pulled up, I wouldn't see it sitting in front of the house. When Roly was alive (I cannot believe I just typed that...When Roly was alive...it is so very strange to hear those words in my head), and I saw the car in front of the house as I turned the corner, I would be so happy because it meant he had gotten home early. I found that now when I saw it there, I had that initial conditioned response of happiness followed by an almost immediate wave of devastation. It was just too much to go through each day so it was better to have the car around the corner. It must sound so dumb but somehow just knowing the car was there was a bit comforting and now, it won't be there anymore. Yet another thing to let go of. I am so tired of "letting go" of things. I have decided to donate the car and hope that wherever it ends up, it is put to good use somehow, even if it is just for parts.

This weekend I have a very special treat planned for the kids. Some of it they know but a lot of it they don't. I am taking them to Disney for a long weekend with my girlfriend and her kids. In addition, Roly's mom is going to meet us there. In the Magic Kingdom during the month of October, they have a special event called "Mickey's Not So Scary Halloween Party." At this event, the kids get to walk around in their costumes and trick-or-treat at the rides. There will be a special parade and holiday fireworks. It is supposed to be a great deal of fun. I was able to get a great package deal so I decided to just do it. I think the trip will bring the kids lots of happiness and they both really deserve that. Billy and Molly adore Disney and to them, it is so special because it makes them think of their dad. We were there on Molly's Make-A-Wish trip only a week before Roly died. I am trying to find ways to celebrate special events and holidays that don't negate what we used to do but that don't totally encompass that either. Halloween was always a very special and fun time for our family. Before Molly got ill, we hosted a Halloween party for all of the neighborhood kids. In addition, each year, we trick or treated with lots of friends from the block and always, we ended up at our home for a pizza party and more fun. Roly and I would bake Halloween cookies with the kids and do different types of crafts. Roly was always a big part of these festivities. In fact, while going through the pictures for the quilt, I found the funniest picture of him in a witches hat complete with long, stringy gray hair. I wish I knew how to work my scanner so I could post that picture! He wore it all night while he gave candy out at the front door. Anyway, we will still trick or treat with the kids on the block and I will still bake the Halloween cookies and do the crafts with the kids but I also wanted to do something different and fun. So this year, it's off to Disney we go and next year, we'll figure something else out. I probably won't post again until we get home from Florida but hopefully I will have some great pictures and stories when I do.

As always, I thank you all from the bottom of my heart for your continued love, support, prayers and kindness. I know I wouldn't be able to do what I am doing without all that you are doing to help us. Truly, whether I hear from you...or I don't...I know that so many people care about us and that makes a world of difference in finding the strength to carry on.

I hope you all are well and are enjoying the fall. Before I say goodnight though...I have to share some WONDERFUL NEWS. Baby Donovan has again achieved remission!! This is absolutely terrific news! It means that he is now able to go to Duke to receive the cord blood transplant that we all hope and pray will help him to beat cancer once and for all. I thank you all...each and every one of you who prayed for this precious child. Please continue to keep him and his beautiful family in your prayers, that he continues to stay in remission, remains strong and tolerates all that is to come. I know his family has much faith and that they are relying on God and all of our prayers to help them through this difficult time. Thank you all again.

With much love,
Donna

Tuesday, October 4, 2005 7:50 AM CDT

Hello again,

Let me begin this journal entry once again by saying "thank you" to everyone who comes by this page to check on us, encourage us, support us and pray for us. You are amazing individuals who give me strength and hope when they are hard to find. Your words are comforting and uplifting but I must say, most of the time, it's not the words that touch my heart so deeply. Rather, it is the fact that you continue to come to this site to read our story. That you continue to care enough to include us in your prayers. That you continue to feel compassion for a family many of you have not even met. For those of you who do know us, that you continue to stand by our sides...listening, loving and helping. That all of you continue to want to help us in our journeys to become (almost) whole again. From the bottom of my heart, thank you.

The past week was not an easy one for me. The 6 month anniversary of Roly's death hit me a little harder than I anticipated. I don't know why I anticipated it to be anything other than what it was...so very sad and lonely. It has been too long already since I have been with my husband. It has been too long since the kids have played with their dad. I want so much to keep things "normal" for us all but the harsh truth is that life is not normal...at least not the normal we had become accustomed to. I think it will be a long time before we begin to feel "accustomed to" life without Roly.

Though life feels so different now, we continue to go through our days filling them with "normal" activities. Perhaps doing so many things that we used to do brings a bit of comfort. These activities are familiar...like old friends that we like to visit. So, one thing we did this week was go apple-picking out east past the Hamptons in a town called Watermill. Every year, Roly and I would take the kids to this little family owned orchard called "The Milk Pail" to pick apples and select a pumpkin. All of the trees there are dwarf trees so it's quite easy for the little ones to pick the apples themselves. It's a nice, long ride and Roly and I always enjoyed it. We passed the time catching up with each other and listening to CD's we hadn't heard in a while. I thought about going with just the kids and would have done that if no-one else was up for going but luckily for us, my dear friend Eileen and her daughter Shannon joined us for the day. It was terrific company and everyone enjoyed themselves so much. The day itself was gorgeous...beautiful fall weather but not too chilly with bright blue skies. So, now I have lots and lots of apples and have to come up with some good recipes in order to use them all! Here are a couple of pictures of us from the day:

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Me and the kids in the apple orchard

Billy and Molly sittin' by some pumpkins...sippin' some home-made apple cider

When the apple picking was over, the kids played together and we had good New York pizza for dinner at Eileen's house. When Billy, Molly and I returned home, we watched a "Fairly Odd Parents" Halloween cartoon. (Billy just loves this cartoon...it has it's funny moments but boy, cartoons have changed since Bugs Bunny was on top.) Overall, it was a really lovely Saturday.

Sunday, Billy had his 1st soccer game of the season. Again, Roly's presence was missed so much. We would cheer Billy on together from the sidelines and always had a good time doing so. Luckily for us, Billy's good friend Matthew is on his team and I am good friends with Matthew's parents. So, Molly and I sat with them. Also, Roly's dear friend, Andy showed up at the field with his wife Victoria. It was so nice of them to come and watch Billy and be there for me. As hard as life is without Roly, I am continually amazed at the goodness and kindness and generosity that is shared with us. (Incidentally, the game was a tie but the kids had lots of fun playing).

On the Molly front, unfortunately her counts were even worse on Friday when we went back to the clinic for them to be re-checked. Her ANC was down to 148, which is very low. This low number indicates that Molly's ability to fight infections right now is not too great so we need to take some steps to protect her. As a result of her low count, I didn't send her to dance because it's taught in an enclosed area with small children and I was afraid that someone could be ill and then Molly would catch it. It is for the same reason that I didn't bring Molly to my brother's house for Katie's "family" birthday party. Instead, we did "outside things", where there is less likelihood of catching an illness. She continues to be off of chemo but we will see what the doctor has to say later today. Unfortunately, her nosebleeds have started again and that is so upsetting to everyone. I hope it is a transient thing. Please say an extra prayer that Molly's counts rebound and that these nosebleeds stop once and for all.

On a very sad note, I wanted to let those of you who have been praying for Clare know...she passed away last week and it is so totally heartbreaking. She was a child with ALL, the same leukemia that Molly has who completed her treatment and was doing fine. Then, 16 months off of chemo, she experienced severe pain in her legs and there it was...the monster that is cancer. Attempts to get Clare back into remission with very strong chemotherapy caused her lungs to be irreversibly damaged and she finally passed away. It is a total heartbreak. It would be so nice if any of you wanted to stop by Clare's page to offer prayers of comfort for her wonderful family and perhaps leave a message of support.

Once again, thank you all. The caringbridge community is just incredible.
Love,
Donna

Thursday, September 29, 2005 8:32 AM CDT

Hello everyone,

Today is September 29th and to me, it is a meaningful date. September 29th marks 6 months since Roly was killed in a tragic accident on his way to work on an otherwise ordinary Tuesday morning. As one might expect, I am still having trouble fully absorbing that this actually happened and the enormity of what this means to me, my children, Roly's family and everyone who loved him so. I cannot even believe that 6 months have actually passed. To me, it feels like Roly just left for work and will be home this evening. And at the same time, it feels like forever since I heard his laugh and shared the day's events.

When Roly died, spring had just arrived. It came and went in a blur. Then summer arrived and it seems to have gone as quickly as it came. Now it is autumn. The weather is finally beginning to change. The incredible heat that we endured has broken and cool nights are here once again. I wonder if it too will fly by in a snap of a finger. Time continues on like the good little soldier it is yet nothing seems to be as it was. I recently read this passage in a book I have on healing after loss and it really struck a chord with me:

But I am no more I,
Nor is my house now my house.
-Federico Garcia Lorca

The death of a loved one shifts the whole foundation of our life. Nothing is as it was. Even what was most familiar seems in a strange way unfamiliar. It is as though we had to learn a new language, a new way of seeing. Even the face in the mirror sometimes seems the face of a stranger.
What are we to make of this? Just that we truly have, in a way, entered a new country. Though the terrain looks much the same and many of the people are the same people, there is a different light over everything.
Remember how long it took, when you moved to a new house or a new town, for it to seem like home? It is the same with any major life change. We will get used to this new land, this new arrangement of people and relationships. But it will take---time to look around, to be startled, to be brought up short, again and again. An inner lurch of protest before we acknowledge---Oh, yes, it's different now.

The above passage really speaks to how I am feeling. How truly everything...even the most familiar and comfortable...seems different, unknown and at times, overwhelming. I believe that eventually, in time, we will all "adjust" in the sense that we will get accustomed to this new life that has been thrust upon us. But I also believe that a part of us will always mourn for what was and for the lost opportunities of what could have been.

There really is so much I could say about the last 6 months but I will leave this topic with a few thoughts:

*When a tragedy actually strikes, the capacity to hurt and ache is much greater than one could have imagined or fantasized about prior to the tragedy.

*Holidays and special occasions are hard without your loved one, but everyday life is harder.

*Human beings are resilient in general and children are more resilient than adults.

*People genuinely care about other people.

*When you feel so low that you think you can feel no lower, down you go...but most of the time, there is a hand extended to help you climb back up.

*Children, loved ones and the desire to honor the one who died make life worth living when you can find no other motives to forge on.

On a "happier" note, today Molly began going to school again at the
Morgan Center. She just really loves it there. I know that she is going to enjoy school so much this year and she is so happy to be back with her friends. We are so grateful that this place exists.

Molly was seen at the clinic on Tuesday and unfortunately, her counts bottomed out so she is off chemo until at least Friday when her counts are rechecked. The drop in counts is probably owing to the intrathecal chemotherapy she had almost 2 weeks ago. This is not really that uncommon for Molly so I will just keep my fingers crossed that the counts recover soon and that she is on her way to better days. She has been complaining of a little sore throat so please, say a prayer that she stays fever-free.

I'll check in with all of you again soon.

With much love,

Donna

PS: A BIG, HEARTFELT THANK YOU TO EVERYONE WHO MADE MOLLY A CHILI PEPPER AT CHILI'S FOR CHILDHOOD CANCER AWARENESS! SHE LOVED THEM AND WE WERE REALLY SO TOUCHED BY YOUR KINDNESS!

Saturday, September 24, 2005 0:16 AM CDT

Hi all,

Tonight I wanted to write a quick entry to share with you the wonderful time we had at this year's Light the Night Walk, which took place at Hofstra University on Long Island. To quote from the web page, the Light the Night Walk is the Leukemia & Lymphoma Society's nationwide evening walk to build awareness of blood cancers and raise funds for cures. Walkers carry illuminated balloons-white for survivors and red for supporters-to celebrate and commemorate lives touched by cancer. Individuals and teams raise money to fund research and find cures. The walk that took place at Hofstra was one of two on Long Island this year. The other will occur at Computer Associates out in Islandia on October 6, 2005. If you can locate a walk going on within your community, join in and help us find an end to these illnesses. I am sure you will find the experience enlightening, uplifting and rewarding.

For my family, this year's Light the Night Walk was truly a wonderful evening...a night filled with hope and anticipation that one day, we will not need to walk to raise funds to find a cure...because a cure will have been found and blood cancers will be a thing of the past. We had the privilege of walking with some very special people. My friends, George and Anita invited us to walk with their friends, Barbara and Al. Barbara is a survivor of lymphoma and she is an inspiration. She raised so much money for this evening that she was awarded 2 "VIP" tickets. These tickets entitled her to a wonderful buffet and a "meet and greet" with NFL New York Jets Quarterback, Chad Pennington. Chad is the 2005 New York Metro Light The Night Walk Honorary Chairperson. He lost his father-in-law in 2003 after a 10 month battle with leukemia. Barbara refused to take these VIP tickets for herself. Instead, she insisted on giving them to us so that Billy and Molly could have the opportunity to meet with Chad. She is so kind and giving and we are deeply touched by her generosity. As you can tell from the picture above, Molly certainly enjoyed meeting with Chad (who incidentally, was so terrific with the kids). And as you will see from the pictures below, Billy really enjoyed meeting this sports star himself.

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Billy and Chad

Molly, Billy and Chad

The whole evening was wonderful. Before the walk started, there were lots of games and activities for the kids. Molly loved watching some clowns juggle and a magician who "ate" fire. She laughed and jumped around so much that never in a million years would you guess that this child is taking chemotherapy each and every day. Billy loved taking "slapshots" at a hockey booth as well as throwing a football at another booth.

The walk itself was great. The weather was perfect and seeing the sea of red and white balloons was very touching. Molly would not hold her balloon for long though. She insisted on cutting it loose and sending it to heaven to her dad, so that is what we did. About half way through the walk, Molly got very tired even though she was being pushed in a stroller. She cried about missing her dad and once again, she broke my heart. I couldn't help but think of the walk we did last year at Computer Associates with a wonderful family, the Bonlarrons. We had such a great time last year. I know Roly had to be watching us from heaven, though I wish with all of my heart he had been watching from right next to me.

I also wanted to mention that September is Childhood Cancer Awareness month. I have seen a *little* bit about this fact in the media recently but not a ton. A local news station came to Molly's preschool, The Morgan Center, to film a brief piece on it. It will air on Saturday evening on channel 11 at 10:00 PM for those of you who are local to New York City and the metropolitan area. I'm sure that Miss Molly will "make the cut", as she seemed to be doing some flirting with the camera man! Also, in honor of Childhood Cancer Awareness Month, the restaurant chain, "Chili's" is sponsoring a "Live a Little, Give a Little" campaign on Sept 26th, and will donate 100 percent of their profits (minimum of $100,000) to St. Jude's Children's Research Hospital. You can also go to their web site Chili's Create a Pepper and create an online "Pepper" in someone's honor and make a donation, if you'd like. Molly had a pepper made for her by Beth Leppo and we just love it! Thank you so much for doing that! So, if you can find a Chili's near you, stop in on Sept 26th for some great food and an even greater cause!

Well, I guess that's all the news for now. Will update again very soon. Thank you *ALL* again for your incredible love, support and caring of our family. Have a great weekend.

Wednesday, September 21, 2005 8:35 AM CDT

Hello everyone,

As I sit here this morning, I want so badly to write some upbeat, positive, hopeful journal entry yet such an entry would be a distortion of the reality we find ourselves still living in. I want to tell you all that we are so much better, that we are enjoying our lives and that we are adjusting; that we feel somewhat whole but again, that would not be representative of the entire truth. Sure, we *are* adjusting...somewhat...because we have no other option but at the risk of sounding corny, I feel like we just landed in Oz and have only just begun the long, unknown journey down the Yellow Brick Road.

The Wizard of Oz has always been a favorite movie of mine, and now, Molly seems to like it quite a bit too. She has been watching it a great deal so it is kind of on my mind. Just like Dorothy finds herself in the midst of a tremendous storm and then thrust into a strange, new world that has some vague familiarities, we find ourselves thrust into an existence that is foreign yet recognizable in many aspects. It feels like we have so long to travel before we get "back home"...to a place of peace and joy that sometimes I wonder if we will ever truly get there. Most of the time, I am able to hold on to the belief that it *will* be better for all of us but even with that, I know that it will never be as it was before. It angers me so much that no matter what we do to heal, it will really never be "OK" because of the fact that Roly died and that void will never really be filled. It will never be OK that the kids have to grow up without their dad and that I have to go on without my spouse. That my in-laws have to live without their son, that Roly's sister has to go on without her brother. That a wonderful man...a husband, a father, a son, a brother, an uncle, a godfather, a nephew, a cousin, a friend...a loving, compassionate, good human being is no longer here to share with us the ups and downs of life. And because of this, we struggle on our journeys, taking it one step at a time with lots of love and help from friends we had before and new friends we have made along the way. Because of all of the love and caring that is shared with us, we are able to have moments away from the pain. So I guess I will tell you about some of those moments of relief that we have coming up...

In a little while, Molly and I will return to The Morgan Center for a "Welcome Back"/Open House get together. We are really looking forward to this because we haven't seen a lot of our friends from school in a long time. I know that there will be some new faces at the school and that others have moved on. No matter who is there though, I am sure that it will be terrific and that Molly is in for another great year in preschool.

Later this afternoon, Billy will take his first drum lesson. That is very exciting. His dad was a really terrific drummer and he would be so proud to see Billy taking lessons. I hope he enjoys it even half as much as Roly did. If he does and sticks with it, I won't even mind if one day, the band practices at our house! (It seems like band practice always happens where the drummer lives.)

On Thursday, we are going to join some friends for the "Light the Night" walk sponsored by the leukemia/lymphoma society. This walk will take place at Hofstra University and it should be a wonderful evening. I understand that there will be activities for the kids and of course, the fundraising walk with lit balloons honoring those stricken with blood cancers.

Over the weekend, Billy will be participating in a special "bereavement camp" through the Center for Hope, the place where we will be going for counseling again in a few weeks. The kids board buses and go to camp grounds for an entire day on Sat. Then they come home for the night and go back again on Sunday. I think it will be very healing for Billy and I am happy that he is going to participate in this. I will let you all know how it actually goes.

I plan to continue to go through and organize pictures for the quilts that are being made. I have *tons* of pictures but prior to the days of digital cameras, I was not organized with keeping them. So, it has been a chore to go through bags and boxes and find what I am looking for. It is also rather draining emotionally to do that because of course, seeing all of these pictures brings back a flood of memories from happier times. Even with the drain I feel, it is good to see these pictures, as it helps me to feel close to Roly.

Wishing you all a good day. As always, thank you so much for checking in.

Love,
Donna

Saturday, September 17, 2005 10:33 PM CDT

Hi to all,

Another step taken on this lousy journey through grief towards healing and hope. This week, I cleaned out Roly's closet and his dresser. It was so very hard to part with his clothes. I had left them untouched until this week. Although clearly I *know* that he is gone and not coming home, part of me refuses to embrace this. I avoided going through Roly's personal belongings because it was a way I could pretend that it had not happened. That he had not died but instead, was on that business trip that just kept on getting extended. Stupid mind games one plays with oneself to avoid such deep pain. I needed to go through his things now because I have decided to have quilts made from his clothing for the kids, Roly's mom and sister and myself. I want to have the quilts for the holidays and the woman who is making them needs to have the clothing now if they are to be ready before Christmas. I thought that it would be comforting to have something tangible of Roly's that we could treasure and enjoy for many years to come. The woman making the quilts is going to incorporate pictures into them by scanning the pictures and then printing them onto fabric. I think that in the future, Billy and Molly will really hold these quilts close to their hearts. I have asked for a wall quilt to hang in our living room and plan to send pictures not only of Roly but of our family as a special remembrance. I think I am going to ask for an additional quilt to wrap myself in too.

As I took the items out of the closet and drawers, so many things triggered memories. The shirt I gave him for his birthday last year, the funny pj bottoms he received last Christmas, jeans with holes and paint splattered from the last time he painted, the sweater he kept almost since we started dating, ties that I picked out to match his suits, Sponge Bob boxer shorts that Billy thought Roly needed to have, clothes that I had just bought him that still had the tags on...things he never got the chance to wear and so on. His clothes held his scent and just smelling them made it seem impossible. How could this be true?? I can still *smell* his essence for crying out loud...how could this be true?? I hate this so much. It is not right. It is not fair. He didn't deserve this and neither did we. I want to know why...how...and still, no answers.

I packed 2 large boxes of clothing for the quilter and 1 large box of things for Roly's dad and family in Florida. I kept his suits...I'm not sure why but I just didn't want to part with them or his sport jacket. Maybe Billy will fit in to them one day, who knows? I kept a few of my favorite sweaters. I'm sure I will be wearing them at home as soon as the air gets a chill. I kept a couple of ties...including his Fred Flintstone tie for Billy. And his Yankee baseball cap. A belt too. The rest got put into 8 large black bags and I brought them to a church in Amityville, Long Island called the "Freedom Chapel." It is a Christian church that runs a drug treatment program called "Teen Challenge." Someone very close to Roly and I went through that program and it helped to save his life. I think Roly would approve of donating his clothes to this organization, as many of the men who come into treatment come literally with the clothes on their backs and no more.

As hard as it has been to part with these things, I am comforted by the fact that I will be getting some of these things back in the form of the quilts. That fact made it just a drop easier and it gave me the motivation to do the task. When everything had been dropped off and mailed out, I went to the cemetery and spent some quiet time there. I left half the flowers I had brought in the vase that was there and brought the other half home. Seeing the flowers makes me think of all of the times that Roly brought me flowers, which truly averaged out to at least a few times each month. Though I complained at times, like most wives do, I truly had a gem of a husband. Loving, helpful, thoughtful, selfless, kind, generous, gentle, and the descriptors could go on. He was one of a kind. His is so missed by so many.

Molly has been very emotional about her dad lately. Perhaps it is the steroids she is now on as part of her treatment protocol. She is very moody and demanding, which is how she tends to get while on steroids but she also has been really crying a great deal for her dad. She has been verbalizing a lot about missing him and feeling sad that he is not here. On the one hand, that is good because she is expressing herself but on the other hand, selfishly, it is so hard for me to hear each day. I hate to see the kids suffering and with this, there is not much I can do except validate their feelings, hug them and reassure them with my love as much as I can. Billy deals with this more subtly. For example, today we were at a birthday party. When it was time for cake, the birthday child made a wish and blew out the candles. Billy came over to me and said, "I know what I am going to wish for on my birthday. I am going to wish that daddy has a really good life in heaven." It is always with us. At home. At school or work. At birthday parties. It never really goes away and that is exhausting sometimes. Billy also continues to worry about forgetting things about his dad. So each night, he has gotten into the routine of saying his prayers and then going through a list of "questions about daddy" and then, "*important* questions about daddy". The regular questions consist of things like, "What was daddy's favorite sport? or "Did he like to read?" and the *important* questions seem to have to do with how Roly and I met and when we knew we loved each other and the like.

I asked a while back but I am going to ask again, especially in light of Billy's fear of forgetting, please...those of you who are/were close to us and knew Roly, could you write a letter to the kids telling them something about their dad or an experience you shared with him or anything at all that you would like to tell them but something...so they have something to hold on to. Lots of you said that you would do this and many have told me that you are finding it difficult to do, I guess because it is such a sad thing in some regard. But it is also such a wonderful gift to Roly's kids. You will be helping them to create and hold on to memories that they will never have the chance to make. They (especially Billy) so want to hear the stories of Roly's past. It is a way of staying connected and not letting go. Please help the kids to stay connected to their dad. The letters don't have to be long or eloquent. They can be handwritten, typed or e-mailed. They can be separate to Billy and Molly or it can be the same letter. Whatever you are comfortable with and whatever you feel like doing. I have gotten some letters and I again thank you all from the bottom of my heart for doing this. It means a great deal to me and I know it will to the kids too one day. Thank you all in advance for doing this. Truly, it is a priceless gift to these kids.

Once again, I want to thank everyone who continues to visit this website and to those who check in on us and pray for us regularly. You are so amazing and supportive and it means so much to me. I see that we are nearing our 200,000 visitor to the page so if you visit one day soon, look at the number on the bottom of the home page. If you are visitor 200,000, please leave us a note in the guestbook! We would love to hear from you.

I want to ask one more thing this evening. Two friends from my incredible on-line group of parents of kids with ALL are really struggling right now. Please remember to keep Clare and Baby Donovan in your prayers as they are really struggling at this time. Thanks again for stopping by.

With much love
Donna

Thursday, September 15, 2005 8:47 AM CDT

Hello everyone,

What a hectic week it has been, and it's not even over yet! The weekend was quite full and busy, as our weekends tend to be. I guess it's mostly good because we are distracted to some extent but I can imagine as the weather gets cooler and summer truly fades away, things will slow down a little bit. On Saturday, Molly began taking dance lessons again. She is taking 2 classes, back to back in the morning. The first is ballet and tap and the second is tap and jazz. The dance studio is in W. Islip, which is about a 1/2 hour from our home but the teacher is so wonderful and good to Molly that it is well worth the trip. Miss Eileen keeps the class size small so Molly can participate and she takes extra care to wipe things down and keeps a close eye on Molly. This past weekend, Molly was the only child in the second class and that enabled her to have a private dance lesson with her teacher. She was actually thrilled with that. Miss Eileen showed her not only jazz steps but Irish step movements too, as Molly *loves* Irish dancing. How funny...a Greek-Cuban Irish step dancer! At the next class, Molly will be absolutely thrilled to find out that her teacher from the Morgan Center (Miss Nancy) will be bringing her daughter (Morgan) to join Molly at dance. Molly adores Morgan and she will be so excited to be dancing with her. For me, it will be a treat too because I am friendly with "Miss Nancy" so we will get a chance to chat and socialize while we watch the girls "do their thing."

On Saturday after Molly finished with dance, the kids and I met my friend, Flo and her husband. Bob. Flo and Bob have a great fishing boat and they took us out for the afternoon. It was gorgeous that day and we so enjoyed the ride. We fished for a while and Billy caught quite a few fish, though none of them were really "keepers." That's just fine though because even if they were large, Billy would have begged Bob to throw them back. He can't tolerate killing any animal for any reason. He won't even allow me to kill a spider or a bug. I have to shoo them out of the house or try to catch the bug and set it free. I think I have an animal activist in the making. It was a terrific afternoon and we had a really great time. Thank you so much Flo and Bob. You are really great and we so appreciate your generosity.

Believe it or not, Saturday didn't end there for us. In the evening, the kids and I took a ride with my parents to New Jersey to a Greek Church festival at my Uncle Gus' church. It was so nice to see some of our family and the kids had lots of fun on the rides. There was plenty of food, music and other activities too. We were all exhausted by the time we got home.

On Sunday, we relaxed for a bit. Being that it was September 11th, I for one certainly felt extra sad that day. I watched the memorial service on television and saw some of my friends as they read the names of their loved ones that perished. Being so close to the site of the attack, we knew too many people who were there and lost their lives that day. Roly was one of the people in lower Manhattan that morning and though he was not in the towers, I was terrified that something had happened to him. It was hard to communicate as cell phones were out. I was so relieved when he arrived home that evening with my brother and his sister-in-law, who *was* in the second tower when the plane hit. We are so thankful that Marie made it home that day. Somehow, after living through that, I thought Roly would be OK in the city. He was smart and knew what to do in emergencies. He had a calm head and was not prone to panic. I still shake my head in disbelief all of the time that Roly is gone. It just doesn't seem like it could have happened and yet of course, I know it did.

Later in the afternoon on Sunday, I took the kids and we went to my brother Van's house for dinner. It was "Grandparent's Day" (something I didn't know about until the day before)! We all had a very nice time at Van and Ro's.

Monday began a new week of school for Billy. He is liking 3rd grade and I am happy about that. For Molly, she had her first play therapy appointment with a terrific therapist I know. I am taking her to play therapy to try to help her work through her own feelings of loss and grief. Though overall Molly is a very happy little girl, she misses her dad terribly and cries for him rather often. She is having a very hard time saying "good-bye" to people that she loves. Though this is very understandable, I hate how she works herself up into such an agitated state at times. For example, when it is time for my mom to leave my house, Molly gets quite anxious and really upset and it can last for a while. She has also developed a fear that someone is going to come and snatch her away and this is affecting her sleeping (and mine too). Anytime she cries for any reason, it always seems to end with lots of sobs and statements about how much she misses her daddy. I am hoping that the play therapy will help. The only down side is that the therapist is in Astoria (Queens, NY) and it is very far from our home. It is almost at the border of Manhattan and it takes about an hour to get there. Still, it is worth it to know that Molly is in such good and loving hands.

On Monday after Molly's therapy was over, I drove her home and then drove back to the North shore to pick up Billy from school. He had *his* therapy appointment so off I went again from the South shore of Long Island to Great Neck, where Billy's therapist is. I think I will go broke from the gasoline alone! Billy has been seeing this social worker since the end of the school last year to help him cope with his thoughts and feelings surrounding Roly's death. The therapy appears to be going well and Billy really seems to like his therapist, "Dr. Tom." The bereavement groups that we attended last year will begin again at the end of this month. For Billy, he will attend a special bereavement camp, which will take place on the weekend of Sept 24th. The kids go by bus to real camp grounds on the East end of Long Island and they spend the day there. They come home at night and return by bus the next day for another full day of therapy and activities. They don't sleep over because it would be too hard for most of the kids to separate given all they have been through (most kids in the group have lost a parent). I hear that it is a wonderful program and the kids really benefit from it. I think Billy is looking forward to that.

By the time Monday night came, I was really ready to hit the sack but unfortunately, Molly had eaten kind of late so I had to stay up and wait a couple of hours so that she could take her chemo on an empty stomach, the way she is required to take it. Tuesday began very early as Molly had to be at the hospital at 7:30 am. She had a long clinic day. It began with a transfusion of FFP (fresh frozen plasma) along with IV chemo. Then she had a spinal tap, intrathecal chemo and prophylactic IV antibiotics. Thankfully, everything went well and her oncologist stopped by to tell us that her spinal fluid was clear (hooray) and that all looked good. The only test result that came back as being off was an immune function test that was done last week. Basically, if I understand it correctly, Molly has a deficiency in something called "IGM." IGM is involved in the body's ability to mount an initial response to a potential infection. This deficiency was likely caused by the chemotherapy but Molly's oncologist wants her to see an immunologist just to be sure. I don't believe this is really any type of "big deal," it is just another thing to add on to the pile, another doctor to see. Her immune functions should recover with a lot of time on their own once she is off the chemotherapy, which won't be until the spring next year. Until then, these levels will be monitored each month. We didn't get home from the hospital until late in the afternoon. What a trooper Molly was! She really didn't complain much and even after all she had been through that day, she danced her way through the lobby of the hospital on her way out. She heard music from "Beauty and the Beast" playing on a player piano that is in the lobby and she just *had* to do a little ballet.

Well, I think this entry is way too long already but I will update with more soon, I promise. Getting back into a structured routine is a good thing but it takes a little time to work out the kinks. I hope that all of you who have kids back at school are adjusting well and that you are enjoying the end of the summer.

With much love,
Donna

Friday, September 9, 2005 7:05 AM CDT

Hello everyone,

Well, we are *just about* cleaned up from the basement disaster we encountered. The plumbing problem is fixed, everything has been cleaned and disinfected, the walls have been repainted, new carpet is down, toys have been sorted, etc. It looks really good but I am exhausted from it all. I have to admit that it was really a blessing in disguise. Roly and I really had wanted to clean out that room but it was such a daunting task, that we put it off. Because of the timing of it all, I was able to box up 4 huge boxes of toys that my kids have either outgrown or don't use. We are sending them down south to the hurricane victims. Knowing that they are going to such a good cause made it a lot easier to go through them and part with them. Billy's teacher's brother lost his house and business in Louisiana but he is fine and so is his family. They have relocated to Texas and have been able to secure good housing. The children have already registered for their new school, though it has been very traumatizing for all of them. Billy's teacher in conjunction with her brother are trying to help others who have not been able to relocate and resettle so easily. A truck is leaving from his school this afternoon.

As horrendous as the disaster of Hurricane Katrina has been and also as horrendous as the loss of Roly has been, I can't help but feel so thankful in the midst of all of this deep and profound loss. The human spirit is unbelievable. Our fellow man...compassionate beyond our hopes and expectations. So many people are reaching out to help the victims of the hurricane, so many people have reached out to help us. I am so thankful to have had so much assistance and support from all over but especially from my parents...I could not be getting through all of this without them. Their constant support and love has been incredible. I guess if you *had* to go through all that we have been through in the past couple of years, you couldn't be better off with regard to the love and help that we have been blessed with. Thank you Mom and Dad, and a big, fat thank you to EVERYONE who has been thinking of us, praying for us and helping us in so many different ways. I have faith that in time, we will all recover. I know that none of us will ever be the same but hopefully, we will be at peace and experience more joy than sadness. I can't wait for that time to come...when I feel healed instead of raw. Peaceful instead of anxious. When I experience more joy than grief. When days come that are not consumed with irrational hopes that it has all been a bad dream from which I will wake up.

This past week has been so busy. A lot of time was spent cleaning, fixing and redoing the kids' play area in the basement. Also, it was Labor Day weekend, the last "unofficial" weekend of summer. Though we spent more time than I would have liked to have spent indoors, we did manage to get to our friends' home on Monday. Our friends, Sheila and Larry hosted a barbecue on Monday afternoon. We went and had a really nice time. Molly was a little fish in Sheila's pool and Billy had a good deal of fun in the hot tub with "the men."

Billy started school on Tuesday and so far, so good. He loves his teacher and she appears to love him as well, so that is great. He has been so happy to see his friends from school and he is excited that are a few new students in his class this year. I am hopeful that this is going to be a great year for him. Molly on the other hand does not begin school until September 28th. She really wants to get back there and I know she will have a ball as she always does. The extracurricular activities are beginning. Billy will be bowling again on a league, this time with new teammates. He wants to play soccer again and is still considering drum lessons. Molly will be taking 2 dance classes on Saturdays. I think it will be a busy year.

One nice thing that happened this week is that our dear friends, Christine and Eileen, had 2 "extra" tickets to the American Idol concert. Joe and Steve, the husbands, backed out for various reasons and Billy and I were so lucky to get to go to the show in their places. Every year, Roly and I would take Billy to see the tour, kind of as a special thing to do just with him. This year, I couldn't bring myself to buy the tickets and go without Roly. I was kind of regretting my decision and then we were blessed to be given the chance to go with such good friends and a lot of them so it made the experience similar to the past yet different at the same time. Thank you Joe, Christine, Steve and Eileen for thinking of us and including us. You are really wonderful friends and we love you.

Well, I guess that is the news for now. I hope the next time I update, things are even and calm. Hope that you all are having a good day.

With much love,
Donna

September 1, 2005 11:28 AM

UPDATE September 1, 2005

Well, the clean up is in full swing. Today, the restoration company sent ONE man to move everything and do the clean up. Yeah, like that was going to happen. So thank God once again for my family. My dad showed up at 8 am and one of his good friends, Al followed shortly after. Chelsea (our nanny) helped too and we all started to move everything out of the basement. Roly's Aunt Sue and Uncle Ed showed up too so they helped as well. Everything got moved out of the basement and the man from the restoration company said that he could not have done the job without all of the help he had. He ripped up all of the carpet and padding and he mopped the floor area with bleach. Then, he disinfected it with some hospital grade disinfectant spray and now there is a blower going, a HEPA air filter running and a huge dehumidifier going too. The bad smell is gone and things are starting to dry out.

Tomorrow morning, a painter is coming. I figured that while everything is out anyway and there is no carpet down, I might as well repaint the room. It really needed it anyway. Ironically, that was one of the last conversations I had with Roly before he died. We were cleaning up the playroom and I said to him that the room really could use to get repainted but we both agreed that it would be a huge job to move everything in order to do it. So we decided to put it off but it just seems to make sense to do it now. The insurance adjuster is coming in the morning and I really hope and pray that all goes smoothly. The carpet guy is coming to measure tomorrow as well. I just want to get it done so I can get my house back in order. What a mess it is now!

As for Molly, she does in fact have yet another ear infection. So, she is back on zithromax for another 5 days. Yes, in the midst of all of this chaos, I had to run Molly back to the hospital so she could get checked out. Her oncologist is going to run a special blood test next week to see if her immune system is lacking in something needed to prevent such frequent ear and sinus infections. Molly seems to be feeling "OK" now and I hope that situation continues.

Billy on the other hand had a VERY difficult time going to sleep tonight. He needed me to lay down with him for a long while and he had so many questions about Roly. The first question he asked though was "How was I born"? and I told him we would talk about *that* tomorrow. Then he went on with many other questions. It was actually kind of difficult for me because a lot of the questions Billy asked were things that he knew the answers to but might be forgetting now. It pains me so to think that he could be forgetting details about his dad. For example, he asked what the name of the company was that Roly worked for. He asked what color his eyes were. He wanted to know his favorite drink and favorite thing to eat. He wanted to know if Roly liked to read books. He wanted to know how he and Roly are alike. The questions went on and on and of course, Billy got to the "Why did this happen" question. Again, he wants a reason and I can't give him that. He wants to make sense of it yet none of us have been able to. He actually said that he is "furious" that this happened and that he so misses his dad. He still seems to be angry with God for this and I am trying very hard to help him see that God did not do this to his dad so instead of being mad at Him, he needs to turn to Him for comfort. It is all so overwhelming for all of us.

I will let you all know how the cleanup progresses. Many thanks again to you all for checking in and keeping "tabs" on us.

With love,
Donna

Wednesday, August 31, 2005 11:59 PM CDT
Hello everyone,

*CAUTION* - This journal entry has some gross content. Those with queasy stomachs should skip it and come back another day. Seriously. I am about to tell you a true but very gross story.

We have had quite the day at the Guarton household. It does not even come remotely close to the suffering going on along the Gulf coast but for us, in our home here, we had our own little natural disaster today. This morning, when our downstairs toilet was flushed, it backed up and caused an overflow of raw sewage, not only in the toilet but it came up through the shower drain and flooded the shower with the most disgusting site I have seen in a long time. Today I learned a bit about plumbing. It appears that the "main" or main sewage pipe leading out of our home and into wherever sewer lines go, was clogged. In fact, it was so badly clogged that when any water ran from the shower or the sink or any other toilet, it caused the waste line in our basement laundry room to back up with yes, raw sewage and dirty water. Now if that isn't disgusting enough, the laundry room is adjacent to the kids play room, which is carpeted. Yes, the disgusting, dirty water seeped into the carpet of the play room and now, there is NO WAY that I would or could let the kids down there. After waiting for a plumber all day, he came, he saw and he said..."No way. Not me. You need someone like Roto Rooter. But don't call Roto Rooter...they are very expensive." So I went off to the Yellow Pages and called someone who offered a coupon. He came for a "free estimate" and wanted about $500.00 to unclog the main. I said, "No way. Not me. I may be a woman with no husband standing beside me but you are not going to rip me off because I am desperate." So...I called my brother (why I didn't do that in the first place, I don't know) and he had a guy who came and saw and conquered the problem. All for the very reasonable price of $100.00. I felt better about not getting ripped off by the first guy at least. However, clearing the line is only the beginning of the saga.

Tonight I scrubbed and disinfected the bathroom until my hands were raw. (Yes, I should have worn gloves but I didn't have any and I just had to clean the mess up.) It is very sparkly now but the basement playroom...that is another story. For those of you who know me, you know that our playroom is PACKED with much, much too much stuff. A restoration company is coming tomorrow and EVERYTHING in there will have to get unloaded. The stuff that was sitting on the wet area of the carpet will have to get tossed in the garbage. That is not *too* much stuff but the kids will not be happy about it. One thing that has to go is a Dora tent that Molly likes to sit in. There is no way to save that item. The company will call my insurance company and hopefully, they can work something out. The carpet will have to be ripped up and the sub-flooring will have to be disinfected somehow or ripped up as well. The washer and dryer will have to be moved out because there is dirty water under the items and I can't get into the area to clean it otherwise. The crawl space has to be cleaned as well, as the "trap" ( I don't really know what that means) is in there and there is sewage in the crawl space as well. This is going to be a HUGE project and very time consuming. Suffice it to say that we have had a very "crappy" day in our house.

On a more serious note, I "lost it" a few times today. I tried with all of my might to be calm and just take it one step at a time but the whole thing was so gross and overwhelming that I dissolved into tears on a few occasions. On top of the obvious concerns with what happened, I have to be even MORE concerned with Molly's health. There is no way she can be in that area with it being contaminated with such germs and bacteria. I just want the carpet out and the clean up to begin right away so that she is not exposed to anything that she shouldn't be exposed to. Today was so obviously one of those days that I not only missed Roly but I felt like I really *NEEDED* him to be here. This is so not my area of expertise (though plumbing was not Roly's area of skill either. He could do everything else really, really well but he was a lousy plumber). Still though, I would have called him at work and he would have come home early and taken care of it. He would be by my side unloading the playroom. He would probably even have made me laugh somehow at some point (though I'm sure he would have heard a good amount of venting before he got me to laugh). I just absolutely HATE not having him here. It is just not right and so unfair. I know that life is not fair but it just hurts so much when that reality is shoved in your face...over and over and over again. Well, let's keep our fingers crossed that the clean up goes well tomorrow and that I don't lose my mind in the process. I won't ask for any prayers or anything of that nature because what I am dealing with here doesn't even come close to the hell that the hurricane victims are facing. I think we should all offer our prayers to them. I guess I would be happy with some good luck.

As for Miss Molly, she had a good check up at the clinic yesterday. Her counts were all good (thank God) and she seemed to be feeling OK. However, today she started to complain again about her ear hurting her. She was kind of "off" tonight and cried a good amount over almost nothing each time. When I laid down with her and asked why she was so sad, she told me that she "missed daddy." That broke my heart. I do think that she misses Roly very much and just doesn't really know how to express her feelings or deal with them. It must be very difficult to be 4 and mourn such a profound loss. If she is still complaining about the ear, I will run her back to the clinic before the holiday weekend.

Billy had a play date today with a friend from his school, Jason, who is on his bus. Jason's dad took the kids to Friendly's for lunch and then bowling. Billy had a great time. Jason's dad told me that Billy mentioned to Jason that his dad died. It is so "right there" all of the time. Perhaps being with Jason's dad made Billy think of Roly and how he misses him too.

This weekend, we have no big plans other than to keep on cleaning out the playroom and trying to recover from the mess I have in the house. Billy is not looking forward to returning to school...he is really a summer kid. He will do fine I am sure once he is there but how he loves summer. I do too so I know how he feels.

Well, I guess that is the news for now. Thank you SO MUCH for checking in, especially all of you who check regularly and leave us so many encouraging and supportive messages. I appreciate it more than you know. I will try to update again very soon.

With love,
Donna

Monday, August 29, 2005 11:08 AM CDT

Hello again,

Well, in a few hours we will be returning home to New York. We lucked out in Florida with regard to the hurricane. It stayed south of us and all we got was some rain and wind from the outer bands of the storm. Unfortunately, other areas of the US are being hit very hard and we all hope and pray that everyone in the path of Hurricane Katrina evacuated to safe areas.

As for our vacation, we had a wonderful time visiting with family and friends. My sister-in-law and I were able to get to the Miromar Outlets and we did some damage there. I was able to do all of the "back to school" shopping and got a few great bargains. My nephew is a manager at Osh Kosh and he was able to get us an employee discount on top of the already discounted prices. Now if only he could go and work at the Coach outlet or something like that!

Billy and Molly had so much fun playing with their cousins and with friends we have here. They even got a surprise visit from Roly's 1st cousin, Louis, and his kids, Rafaelle and Carla. Louis lives in the Miami area and he drove over to the west coast to spend some time with us. We are so happy that he did so. Roly's Aunt Judy also came from Miami to see us and that is always a very special treat. I know Louis' mom, Elichi, would have been with us too, except she was in Cuba visiting with her daughter, Babita. She's back in the states now so welcome home Elichi and we missed seeing you! Thank you for taking Roly's picture to all of the relatives in Cuba and for gathering some pictures from there for us.

Some highlights of the trip for the kids were bowling, the dinner show we went to with all of the girls, kite flying, a baseball game and going to a water park in Cape Coral called "Sun Splash". Billy especially LOVED the water park and it made it extra fun to be with so many cousins and friends. We were just shy of the 25 needed for a group rate! Molly got a little daring while at Sun Splash and she jumped down a slide instead of going down gently. She slammed the back of her head and got quite a large bump, causing me to place a call to her doctors in NY. Thankfully, she seems fine but let me tell you, every gray hair on my head (except for a few) has her name on it.

Tomorrow, Molly will be seen at the clinic for blood counts and a check up. Before we know it, school will be back in session. I won't have my computer right away at home but will update with new pictures as soon as I am able. As always, thank you all so much from the bottom of my heart for checking in and for caring so much about us.

With love,
Donna

Thursday, August 25, 2005 8:43 PM CDT

Hello to everyone from not so sunny Florida,

My apologies for not updating sooner. The past week has been kind of hectic (what else is new?) and on top of that, the computer was acting up and needed to be sent out for repair.

I am updating from my sister-in-law, Vicky's home in Cape Coral, Florida. Since Billy was finished with camp and we had a couple of weeks before school started again (school doesn't begin until 9/7 in New York), I decided to take the kids and come to Florida to visit with Roly's parents, his sister and her family. I also have a brother here in Cape Coral and we hope to see him too while we are in town. We arrived on Tuesday and I am very grateful that the trip itself went fairly well. I find myself very anxious when it comes to traveling without Roly. I am nervous that one of the kids will get away from me in the crowd of the airport, that I will lose a bag, that I won't be able to manage it all and the like. Thankfully, the trip down was rather uneventful. The kids were really well behaved in the airport and they were very cooperative on the plane. Our flight was on time and everyone treated us really well with the exception of one airline member, who questioned me in a "not so nice" manner about why I requested a wheelchair for my daughter who looks "just fine." I explained that she has cancer and is on daily chemotherapy and that she just finished a round of vincristine, which causes her legs to hurt and prevents her from walking distances comfortably. (The distance from the gate to baggage claim was too much for Molly to walk without pain and I just couldn't carry her and the bags.) The airline member changed her tune then but honestly, the way she spoke to me initially really ticked me off. I know that Molly *looks* terrific, and believe me, I am thrilled that she does look well and that she functions in a pretty typical manner. But simple things like a cut on the foot, which turned to cellulitis or an ear infection that landed us inpatient for a week are reminders that no matter how well she looks, she is still fighting cancer with a weakened immune system. Anyway, enough of that...

Since we arrived, we have really enjoyed spending time with the family. Molly was soooo happy to see her grandmother and cousins that she practically cried upon seeing them! The weather has been kind of lousy and wouldn't you know it, they are expecting a hurricane to hit in the next day or so. Truly, it doesn't much matter to us. We are just happy to be together. I have to say though, Roly's presence is so sorely missed. However, one good thing is that when we are among Roly's family members, we can talk freely about him and share stories and recollections. That is actually quite comforting. I know how deeply Roly's family is hurting too so being together kind of enables us to share the pain with one another.

On a different note, whenever it stops raining here, the kids put their bathing suits on and jump into the pool. When it rains, they come inside and play games or watch television together. Yesterday, we went to a local kids' science center called the "Imaginarium." Everyone really enjoyed that and today, we went to a place called "Mike Greenwalls." At Greenwalls, we played miniature golf and some arcade games. It was a nice day until I got stung by a hornet. My entire leg is swollen and boy, it hurts so much!! Who would have thought that such a little insect could cause so much discomfort? I'm sure it will be better soon but for now, it is really kind of painful.

Tomorrow, we plan to see a movie during the day. In the evening, we are having a "Girls Night Out." We have tickets to a local dinner theater and we are hoping that the storm doesn't cause the show to be canceled. The boys will be at a friend's home and they are looking forward to that as well.

I promise to try to update again very soon, certainly before we leave Florida since I don't know when I will get my computer back. Until then, I hope you are all enjoying yourselves and doing things that you love to do. Thank you so much for "checking in" on us. It really means a great deal to me.

With love,
Donna

PS~ For those of you who asked, yes Kristie (Kendrie's mom) is just as funny in person as she is on her webpage! I had such a nice time visiting with her and another good friend, Michele last week. I am so happy that we got a chance to meet in person and hope that we have an opportunity to do it again very, very soon. Thank you so much Kristie for coming and spending some time with us!

Friday, August 19, 2005 8:13 AM CDT

Hello to everyone,

Well, we have finally had a break from the oppressive heat we have been experiencing as of late. While it is still warm, at least we don't feel like we are walking through "thick," hot, humid air.

To bring you all up to date, after we recovered from Saturday's canoe race, on Sunday we had the pleasure of attending a block party at our friend Andy's home in Long Island. Andy is the one who introduced me to Roly. He was one of Roly's closest friends from childhood. Andy and his family recently moved back to the states from Japan, where Andy worked and lived for a number of years. We are glad to have him back in New York and so close to us. Billy is pretty impressed with Andy and thinks he is very funny. Andy has a sharp, quick wit and a way with "one-liners" that can leave you laughing for a long time. Despite some rain, the block party was fun and the food was great. Billy and Molly both loved climbing behind the steering wheel of a fire truck that arrived for the kids' entertainment. Molly also loved running through the sprinkler and playing in the kiddy pool.

School doesn't begin for Billy until September 7th. Even though it is still a number of weeks away, I spent some time this week shopping for school supplies and getting organized. I started to clean out Billy's room and went through his closet and dresser. I had to bag up many items that he has outgrown. He's gotten very tall recently. I was struck and somewhat shocked by how I felt each time I picked up a piece of clothing and saw Billy's name written on the label in Roly's handwriting. Just that little thing left me feeling like I had been kicked in the gut. I almost didn't want to part with those things just because Roly wrote on the tag. It hit me that I won't be seeing his handwriting on any of Billy's new things. Such a small thing and yet such a strong feeling of loss overcame me.

That is one thing that is so awful about losing someone you love so much. The little things. While I dread "big" events like Christmas and birthdays without Roly, I know I will have a lot of support during those obvious times. But it is in the mundane, everyday happenings that I think I miss Roly the most. I can't believe that he won't be sitting next to me on the couch, eating ice cream as we watch with eager anticipation the season premieres of "Curb Your Enthusiasm," "Extreme Makeover Home Edition" and the "Amazing Race." I want to get a desk for Billy's room and he won't be with me to measure the space, offer his opinion and help me pick out just the "right" one. He not there to call when I want to ask him something about the sprinkler system or how many gallons our oil tank holds. When I misplace my sunglasses or keys, he's not there to be the voice of reason, saying "relax, they are in the house" as he finds them without fail. He won't be there to watch Billy board the bus on his first day of 3rd grade and he won't be with me at "Parents Night" at his school. Molly can't show him how now she can buckle the car seat on her own...sometimes. He's not there to help me unload the car after a trip to BJ's or Costco and ask why we need such a large supply dried mushrooms (that's its own story). We can't debate how awful the Yankee pitching is this year and won't be watching play-off games together. He can't answer Billy's questions about "who the best Yankee hitter was" or "who got the most homeruns in one game." He's not there to bring me flowers any more "just because" he saw them on the street as he walked to Penn Station and he knew I would like them. There's no-one at the other end of the phone line late in the day when the kids have pushed me to my limit to say, "You're doing a great job. Don't let the kids get to you. I'll be home soon and give you a break." On the other hand, when the kids do something funny or cute or smart, there's no, "Wait 'till we tell Daddy about this! He's not gonna believe it!" All of his computer expertise...he had *so much* knowledge and now, I can't even figure out how to keep my home page from switching to some dumb ad page or how to get the pop-ups to stop, even though I have the pop-up controls on! This list could go on and on and on. It's all things like this that cause me to hurt deeply, to feel lonely and sad that he is not here, where he *should* be, with us. I feel so sad not only for us but for him too because I know how much he enjoyed our lives and being with the kids. We miss him so very much.

On a different note, let me bring you up to speed with Molly. She went to the clinic on Tuesday and her counts were "so-so." Her ANC was around 750, which is just at the level for holding chemo on Molly's protocol. So rather that hold it all together, her oncologist just cut back on her 6MP. It seems that every time the 6MP is raised and brought close to the 100% mark, Molly's counts drop. It is possible that she just doesn't process this drug too well. Her oncologist kept her on full dose of oral methotrexate. This week, Molly also received vincristine (which is a nasty drug that causes Molly leg pain and constipation), dexamethasone (steroids) and pentamidine (a prophylactic IV antibiotic). We were at the clinic for a while but Molly did great. Unfortunately, Molly's ear is still red so she needs to continue on zithromax (antibiotic) for another week until she clears the infection. Nothing really slows her down too much though.

I am excited about a visit later today from an on-line friend, Kristie. Kristie is
Kendrie�s mom and those of you who 'know' her, know she is a riot. Kristie is coming in to NY and I have the pleasure of picking her up from the airport and having dinner with her. She has been so supportive and kind to us and I can't wait to meet her. Kristie and her friends did the most amazing thing for our family a while back. They created a gorgeous scrapbook for us to put our "Make A Wish" trip pictures in. I will be forever grateful to her for that.

In fact, although I have said this before, I want to say it again. I will be forever grateful to so, so many people who have been helping us through Molly's illness and Roly's death. Many of you, I have not even met in person, yet you write, encourage, mail us books and articles, trinkets and cards and more. The on-line community at caringbridge is awesome. Even more, my support system here at home is amazing as well. I have to say that I have been blessed with the dearest friends. They reach out and take care of us regularly. My family is awesome. My parents come to our house almost every day. Dad tends to the garden, Mom helps with things around the house and with the kids. The kids are so very attached to them, especially Molly to my mom. I know my brothers and their wives are really "there" if I need anything and that is a great comfort. Roly's family is so wonderful too. Though they are hurting themselves so deeply, they continue to take care of us with phone calls, visits, support and most of all, love. As much as I completely *HATE* the situation we are in, I am so grateful to have so much help to get through it.

Well, I hope you all have a great weekend.

With much love,
Donna

Saturday, August 13, 2005 9:10 PM CDT

UPDATE: Well, the canoe race that was held to benefit Molly and our family today was a great success! So many people came out to support Molly and another young man, Anthony (who is also suffering with ALL). It was sooooo incredibly hot and humid but that didn't stop anyone from paddling like crazy. I believe that there were 14 or 15 races in all, with about 10 canoes in each race. The course was 2 miles, which might not sound like a lot, but it sure was. My brother Van and his good buddy, Mike raced and they won a trophy! Unfortunately, the trophy they won was for the "Most Capsized" Canoe! Let me tell you, once a canoe tips over, it is NOT easy to get back in but Van and Mike did it and they paddled their way in with smiles on their faces. They were great sports. Thank you guys so much for racing! In fact, we want to thank everyone who gave of themselves to be with us today. We want to also thank our Uncle Ed and cousin Steve for racing along with friends George and Danny. It was great fun to watch you all. Also, we want to thank our cousins, Christine and Chris who so generously donated hundreds of T-shirts for this event. The shirts looked great! We are especially thankful to the organizers of this event, the Massepequa Fire Department as well as Mr. Tom McCarthy and Mr. Pat Burns who put it all together. These men are amazing and very hard workers! This was a day we will not forget. In fact, in the midst of so much recent unhappiness, today was a day that actually felt good. The love, support and generosity of others is so healing and am so grateful that our family has been the recipient of all of the above.

Here are a few pictures from the day for you all to enjoy.

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Mike and Van

Coming in from being capsized

Kids having fun

Billy and Katie

Steve and Ed before the race

Saturday, August 13, 2005 0:14 AM CDT

Hello again,

It has been a busy week for our little "prima ballerina." Molly has been participating in her second week of "dance camp" with her wonderful teacher, Miss Eileen. This time, she is with some children her age and some that are a few years older. Molly just *loves* being with the older girls. She has come out of camp each day covered with glitter, make-up, nail polish and a smile ear to ear. Somehow I think that dancing is not the only thing Molly is doing in camp...sounds to me like there is lots of girlie fun to be had! Right up Molly's alley to be sure. Molly's teacher was kind enough to video tape some of Molly dancing. What a total riot. This will be blackmail material for sure one day.

In addition to camp, Molly has spent a lot of time swimming in the pool. She is mastering the art of swimming under water for a distance. It has been very hot and humid here lately so it's been great to cool off in the pool. Unfortunately, it looks like Molly may have been swimming under water a little *too* much, as she was diagnosed with an ear infection yesterday morning. Molly was seen at the clinic on Tuesday for a regular checkup and blood counts. At that time, all was well. Her counts were solid and up quite a bit. As a result, her doctor raised her chemo so that her dosages were near a full dose for a person of her height and weight. She took the increase of medication without any difficulty. Two nights ago however, Molly woke up a number of times and was crying and complaining that her right ear hurt. That is never a good sign. Thankfully, she did not have a fever so we did not have to rush off to the ER at that moment. However, in the morning, I took her to the clinic right away and the doctor saw that her ear drum was red and bulging. So, she's back on antibiotics...again. There should be no pool for Miss Molly (at least for a few days). For most of the day yesterday and today, she seemed to be feeling fine but last night, she complained of a very bad headache across her forehead. The oncologist said it was OK to give her some Tylenol and that seemed to help her. She fell asleep and slept through the night. Please say a prayer that she is feeling top notch very soon.

As for Billy, he continues to enjoy camp tremendously. He participated in the camp talent show and seemed very pleased with his performance. I still can't get over the fact that he was the only one from his group to get up on stage and do a solo performance! He told me that "nobody won" because everyone was a winner. However, he thought that if they had to pick a winner, he would have been considered. It's great when your child exudes that kind of self-confidence. Although there were no official "winners" at the talent show, Billy did arrive home with a "Camper of the Day" ribbon. This is the 3rd time that he has come home with that award. He was so proud of himself and so was I. He is really a terrific kid. There is only one week of camp left and I know Billy will be sad when it is over. But it won't be too long before school begins again. Though he says that he never wants summer to end, I know he is eager to see his friends from school and to get back to a more "normal" routine, (whatever that will be).

Earlier in the week, Roly's "uncle" died. Jose had been ill with cancer and though we knew that there were no more treatment options, he passed sooner than expected. Roly and his sister grew up with Jose's daughter and the families are so close that they regard each other as genuine relatives though there is no actual blood relation. Roly's sister, Vicky flew in from Florida to be here for the wake and funeral. His parents were unable to attend because Roly's dad just had knee surgery and cannot travel yet. Though it is for a very sad reason that Vicky is here, I am happy that she is with us. Whenever I am physically with her, I feel a little closer to Roly. I can talk openly about him and how much I miss him because Vicky is open about her thoughts and feelings. She knows the stories and she knows Roly. We have strong bond that not even death can break, ever. She told me after Roly died that he gave her many gifts over the years but the best gift of all was a sister that she never had. Well, I feel the same way. I love my brothers dearly but always missed having a sister. Roly gave me that priceless gift and I will always be grateful for it. Not only am I happy to have Vicky with us, the kids are *thrilled*. They adore their aunt (and her whole family) and relish any time they get to spend with her.

As for an update on me, I am doing OK I guess. I continue to "go through the motions" of what needs to be done. From the outside, it is "all good." But from the inside, it is so sad. I miss Roly so much and though I am beginning to understand and accept that he is not coming back, I want desperately to connect with him and feel him close to me. In the novel I just finished, "Good Grief" the main character says this in response to the loss of her young husband, Ethan:

"What I really want is some sort of "it's okay, I'm here" sign from Ethan. The worst part about grief is that it's so one sided, so unrequited. Lost loved ones don't reciprocate, when you get right down to it. You try to convince yourself that they do. But Ethan hurts me every day with his indifference, his aloofness. I pray, I journal, I speak to him. Not a peep. He's like the popular kids in high school, breezing by in a flash with no eye contact or acknowledgment of my existence. "

That passage was powerful when I read it. I really, really want the "it's okay, I'm here" sign from Roly. Though I haven't received that personally, Roly's cousin has had a couple of dreams about him, one recently in which she felt that Roly has a message for me. So here's how the dream went:

"A bunch of us were at your house. Me, you and the kids were inside, maybe some others. You were on the phone in the den (downstairs near the doorway between den and bathroom).
Everyone else was outside working - on lawn, cleaning out shed, cleaning kids outside toys, etc., but it was getting pretty dark -- like 8pm summertime kind of dark when the doorbell rang. I answered the door and it was Roly! I said - Roly!??? He just said Hey there, do me a favor, just let Donna know that I'm here, but I have to stay out here and make sure everything gets taken care of. I said OK and in a flash he was gone. No one else saw him. But boy it was sure clear as day!"

Reading that brought tears to my eyes, but in a good way. It felt like maybe he really *is* with me. Maybe for some reason, I just cannot connect with him directly now but the thought that he is NOT indifferent or aloof is comforting. I just want to have a two way conversation with him. I fantasize about an even yearly phone call to heaven. I don't care what the long distance rate is. I just want to know that I will be able to have a real, interactive conversation with him again. Deep down, I believe that I will when it is my time to leave this earth and join Roly but I want it now. Like a little kid who doesn't understand that even though the cookies are in her reach, she can't have them...yet. She has to eat her dinner first, then dessert. Well, I've always kind of liked the notion of having dessert first but I guess that's not how things work.

Well, it's so late and we have an early day tomorrow. It's the canoe race in Molly's honor and I still have things to organize and pack up for the big event. I'll do my best to update tomorrow and let you all know how it turned out. It should be a good deal of fun for everyone involved.

Hope you all have a great weekend.

With love,
Donna

PS. I want to thank you all again for your incredible support and kindness. You are all terrific. I so appreciate everything being done for us and really appreciate the time you take to read our page and for so many of you, to sign our guestbook with all kinds of messages of hope, love and compassion. Thank you all.

Saturday, August 6, 2005 7:46 AM CDT

Hello everyone,

How did another week slip by? Sometimes it feels like things are going by so quickly and other times, it feels like time is standing still. A very strange perceptual experience to say the least.

We have been busy doing ordinary things since I last wrote. Billy continues to go to camp each day and he is really loving it so much this year. This past week, Billy and his friends did so much. They bowled, swam at local town pool, went to a cooking/party place where they made and decorated their own cutout cookies as well as their own pizza, played tennis and more. Billy is getting ready for the camp talent show next week. He plans to sing a song and wants to practice over the weekend. They don't let the parents go so I am disappointed about that but I will keep my fingers crossed that he does well and that he feels good about his performance when he is done. This weekend, he has a birthday party to attend and his cousins will hopefully come by on Sunday. He is such a terrific little boy. I feel so bad that he has so much to contend with at such a young age. He is in many ways more in touch with his feelings and thoughts than others his age yet, he is still only 8 years old. He looks forward to going to our weekly bereavement group and I think it is helping him somewhat. He has been such a good "big" brother to Molly and I hope that they remain close as they grow up.

As for little Miss Molly, she has been keeping busy too. The past week on Long Island has been very hot and humid. Molly swam in the pool every day. She is becoming quite a good little swimmer. She is not afraid of the water at all and even jumps off the diving board into 8 feet of water screaming, "cannon ball" (though she really doesn't know how to do them yet)! She usually swims in a bathing suit that has flotation devices built right into it and with that help, she gets around the pool very well. Someone recently asked about our nanny. Yes, we still have her. She hasn't run away from this crazy house....yet. Her name is Chelsea and Molly is now really beginning to connect with her. In the beginning, Molly didn't really want much to do with her but now, she likes her a lot. Chelsea plays lots of games with Molly and swims with her in the pool. They are becoming pals. (Billy likes her too.) For me, it is good to know that there is someone else in the house should an emergency arise. Also, she helps out with some chores and things in the house so that is a great help.

On Tuesday, Molly went to the clinic and Dr. Shende looked at her foot again. Though it was much better, he continued her on the antibiotics (Keflex, 4x per day) until the end of the week. Also, Molly's counts dropped significantly and as of Tuesday, she was neutropenic. She stopped taking her chemo until today. Today, we went back for yet another look at her foot and to redo counts. Molly's foot looked *much* better and now she can stop the antibiotics. Her counts were up a little so her oncologist decided to start Molly back on a 50 percent dose of 6MP. We will return to the clinic again next Tuesday for more counts and IV chemo.

We had a little excitement one night this past week. We had a blackout in my area and we lost power for about 4 to 5 hours. The kids were a little bothered by it at first but they adjusted and thankfully, it was at night so Billy and Molly were sent to bed a little earlier than usual. That's not such a bad thing now is it? I couldn't help but think about the big blackout that occurred along the Eastern seaboard a couple of years ago. Experiencing the recent loss of power was like a flash back to that time. I must have spoken to Roly by cell phone so many times that night. He was stuck in NYC, as the trains were not running. He finally got home after many, many hours by renting a car that had almost no gas left in it. He and his friends pretty much coasted into the train station parking lot where Roly's car was. I was so happy to see him when he finally walked through the door that night. All night during this recent power loss, I kept imagining him walking through the door again. I would throw my arms around him and tell him about the craziest dream I had...that he had died. We would talk about how ridiculous that notion was. I would snuggle up next to him and hear about his day. Then I would tell him about all the stuff the kids did. And we would be back to normal and would live "happily ever after." The end. But as you all know, it's not a bad dream and I just don't know how we will ever live "happily ever after" now.

For me, some days this week were awful and some were...less awful. I hate living like this, constantly with the cloud of grief hanging over my head. I want it to blow away and leave met alone. I just want my husband back. I am reading this novel called "Good Grief," which is of course, about a young woman whose husband died. The book is actually funny in some ways and very poignant in others. One passage had me laugh out loud. The main character talks of being too tired to do much of anything. I can relate to that. She talks about hiring help to do the things she can't bring herself to do. Among those hired, she imagines hiring a "grief underling," someone else to do the mourning for her. She jokes, "This is Helga...she'll be working through the loss for me. Helga, today I need you to touch all of the doorknobs in the house and check each lock ten times. Then, obsess about my husband's suffering. Worry about the future and be sure to eat an entire sleeve of Oreos as you do it. I'm going to bed." How I wish I could "outsource" my grief. Mourning the loss of someone you love so deeply is truly exhausting. There is never really a "break" from it.

Little things set me off and get me going. Today, as I opened the blinds in our bedroom, I had to lean over a box of old pictures that I have stored there. On top of the box was a pair of Roly's clean socks and before I knew it, they were in my face. The sight of his socks right in my face made cry like a little kid who just fell of her bike for the first time. It's so strange how I never really know what will get me going. This week, stupid T-Mobile (our cellular service) decided to *improve* the voice mail features. As a result of this *improvement*, you had to re-record your outgoing message. Now when I call Roly's cell phone, I can't hear his voice anymore and just pretend that he is busy and will call me back later. Now I get this stupid *&#@** message that recites his number in a cold, detached robotic tone. It makes me so mad. I find myself wanting to visit the cemetery more than I ever thought I would. All I really do is cry there, except if Molly is with me. I try not to scare her by crying hysterically in front of her. Little kids need lots of reassurances and structure that they will be taken care of and are safe. Still, I find the whole attraction to the cemetery a little odd, because I don't believe he is there.

On a more positive note, I met a really lovely woman in the summer bereavement group Billy and I are attending. We seem to have a good amount in common and this past Thursday, we met for breakfast and chatted. It was nice to be able to share my thoughts and feelings with this woman. Another woman I "met" on-line has e-mailed me about her friend who was also recently widowed. This woman sounds very nice as well so perhaps I will get in touch with her too soon. Sometimes I worry though about spending too much time with other widows because I am so sad right now that I don't in any way want to "bring them down" if they are in a better place than me. Also on a positive note, one of Roly's oldest (sorry MaryEllen) friends dropped by for a surprise visit this week. She is a visiting nurse and ironically, was caring for my friend's dad around the corner. It was great to see her and get caught up. Of course, as soon as she asked how I was, I burst into tears. How I *hate* it when with no warning, the tears flow like a faucet. It's like I don't even have control over my own emotions.

Here's one very funny thing that happened this week. Molly is a girl who *LOVES* make up. So, yesterday, she took some very gooey, glittery lip gloss and decided to play beauty parlor. She rubbed it through her hair. After 3 shampoos, it was no better than when she first rubbed it in. So, I searched the Internet and viola, came up with a solution. We rubbed a ton of cornstarch in her hair. I was at my mom's house at the time and didn't have my camera, but boy would I have liked to. My mom has a 35 mm that is not working great but she took a few shots anyway. I hope when the film is developed that there is at least one good picture of this. Molly looked sooooo funny. Then I washed her hair with clarifying shampoo and conditioned it. It is much better though we may have to do it once more to get it all out. This kid....there is never a dull moment with her around.

I want to mention that I have received some of the loveliest letters about Roly for the kids' scrapbooks. I cannot thank those of you who wrote and sent these letters enough. They are so comforting and they really help me to feel closer to Roly. I just know that one day, these letters will do the same for my children. Some of you have told me that you are finding it difficult to write about Roly. You have told me that it makes you so sad to think about the fact that he is no longer here to share in so much. I understand that completely but please, don't give up on writing to us. This is a gift that no money could ever buy. It is a gift of love. Roly was a person who was so happy and full of life. Thinking about him and sharing memories of him is a way to honor who he was while giving the children a chance to "know" him in a way that they would not otherwise without your help.

Well, I guess that is the news for now. Just to mention again, the
canoe race to benefit Molly and another boy suffering with leukemia is next weekend. We plan to be there so if anyone is interested in joining us, please come on by. My brother will be racing with one of his friends and so will Roly's uncle and cousin. It should be a lot of fun.

With much love,
Donna

Sunday, July 31, 2005 11:53 PM CDT

Hi again,

It's late Sunday and once again, while I am tired, I just can't seem to put myself to bed yet. Everyone else is sleeping so the house is quiet. I wish I could find the "right" words to capture how I feel but it is so difficult to do that. Suffering the loss of someone you love so dearly impacts on every level, in every way possible. Physically, I walk around with "butterflies" in my stomach all of the time. It is a "sick" type of feeling. For me, it is what I feel when I am anxious and I remember this level of anxiety before I took my orals for my doctorate degree, when I sat for my licensing exam, right before my wedding, before giving birth to the kids and when Molly got diagnosed. With the exception of Molly's diagnosis, all of those other events were discrete...they had a beginning and an end. And when the end arrived, the anxiety was gone. One of the things I used to "tell myself" to get through those feelings was "This is time-limited...it will pass and you will not feel this way forever."

Now with Molly's illness, it is different. I have the *hope* that this will end with her being cured and cancer-free for the rest of her life but it is not so easy to dismiss the anxiety I feel with regard to her health. I think I will always worry to some degree about her medical condition. I have learned how to live with her illness and how to manage it the best I can. I have educated myself so that I feel empowered. I have sought support from others going through it. And of course, I always had Roly by my side, supporting me, reassuring me and loving us all through it. By next March, Molly should complete her chemotherapy and be off to a life that is not filled with needle sticks, transfusions, awful tasting medications, invasive procedures and precautions that prevent her from living more freely. Nothing I say or do will erase what she has been through, or what we have been through as people who love her so much, but I hope there will come a point in time when leukemia is not so present in our everyday thoughts and when we return to some type of (altered) "normalcy."

Trying to cope with Roly's death is somewhat like coping with Molly's illness. I am learning to live differently and am trying the best I can to manage so many intense feelings that I have as well as those that the kids experience. I have begun to educate myself by reading books and the like on grief and sudden loss. I have sought support from others going through this. But the big difference between Roly dying and Molly being ill is that with Roly's death, I have lost my best friend and a main support. The one I always relied on to say, "You're worrying too much...it will be fine" is no longer here to say that. There are no loving, reassuring hugs from my husband. There is no hope of a cure, no hope that we can somehow get back to who we were before the accident. Somehow, someway I am faced with truly recreating our lives and I am somewhat lost as to how to do this. Roly and I had plans...like everyone else. We had hopes and dreams for the future. All of those dreams were comprised of the two of us, not just one. I feel like all of that has been shattered and now I have to pick up all of these broken shards of glass and see what I can save...how I can change the glass from what it used to be into something acceptable now but no matter what it becomes, one will always see that it is a repair job.

Since I last wrote, we have been keeping busy. One day, Molly and I went to the Long Island Children's Museum with my parents, mother-in-law and two of my nieces. (Billy was in camp.) We had a great time. The kids always love it there. After about an hour of being there, I noticed that Molly's foot looked funny. She had gotten a bad scrape on it a couple of weeks ago and then opened the wound after that. I noticed that the cut look more red and her foot was hot. And just like that, our trip to the museum was over and Molly and I were off to the hospital where she was diagnosed with cellulitis (basically, a staph infection on the outer skin). She was put on antibiotics four times a day for the next week. It is looking better already. I was a little concerned because we had just been at the hospital two days before that and Molly's counts were great. On Thursday when I took her in for her foot, her counts had dropped a good amount. Her oncologist seemed to think it was from the infection so we'll see how they are this week on Tuesday. Never a dull moment.

On Friday, to make up for the short trip to the museum, Nora (my MIL) and I took Molly and her friend Kiera to a local amusement park called "Adventureland." The girls LOVED it. There are lots of kiddie rides there and for both of them, the faster...the better! It was so great to see them laughing so heartily. That evening, my good friend Joe called and invited us to dinner at a local hibachi restaurant. We had a great time and with Joe's family and my friend Eileen and her daughter. After dinner, we congregated at my house and the kids did a little "night swimming." They really enjoyed that. For some reason, "night swimming" is a real big treat.

Yesterday, we spent the day with our friends, Steve and Cindy and their family members and friends. Every year, Steve's block has the *best* block party and this year was no different. The kids just love being able to run around in the street without worrying about cars. They played some kickball, played in a bouncer that was there, went on a giant, blow up slide, danced in the street to great music played by the DJ and more. It was really terrific. Roly always loved the block party too. He and Steve used to play in a band together and they were good friends. He looked forward to this day as a time to kick back and catch up. We missed him there.

Today, we once again had so much fun at the Long Island Ducks Game. We went with the Morgan Center and as always, enjoyed ourselves immensely. Molly was so happy to play with "Miss Nancy's" daughter Morgan while Billy and "Miss Nancy's" son Trevor compared game boy knowledge in between innings. After we got home from the game, my parents came over for dinner. My brother and his family came too and again, the kids swam while the grown-ups talked.

In just a few short hours, my mother-in-law will be heading back to Florida. It is always hard to say good-bye to her though we plan to see her in the near future with a trip of our own to Florida. It was great having her here. Please say a prayer that she gets home safely without any incidents.

Well, I guess that's it for now. As always, thank you all for your continued love, prayers and support.

With much love,
Donna

Thursday, July 28, 2005 9:03 AM CDT

Hello everyone,

First, I have to thank all of you who signed Molly's guestbook or sent e-mails to me recently. It is comforting to know that you all who have been so supportive of us are not "sick" of hearing about how tough things have been and continue to be. Although I truly do try to stay as upbeat as possible for the kids as well as myself, sometimes the feelings of loss and sadness are just so overwhelming and painful. I have said it before and I guess I'll keep saying it...I just miss my husband. It is that simple...we *miss* Roly. The more time that passes, the more profound the loss because more time has passed since we were last with him. It is still so hard to really comprehend the enormity of what has happened, not only to Roly but to all of us who love him so much. What I wouldn't give for just 5 more minutes with him.

The other day, I learned that the mom of one of Billy's little league teammates died after a long battle with multiple myeloma. She was young, beautiful, loving and smart. She and her husband were happily married. The little boy on Billy's team is their only child. My heart broke for the family when we heard the news. Whether the death is sudden or anticipated, you are never quite *ready* for it. The little boy no longer has the benefit of having his mom who adored him, though he has a wonderful, loving father. I went to the wake this evening to extend my condolences to the family. Billy asked to come along. He told me that it made him feel better when he saw some of his friends at Roly's wake and he wanted to try to help his friend feel better in turn. What a terrific kid he is. I am so proud of him. He and his friend sat in the first row of seats, playing a hand held video game for quite a while. They didn't speak much about the boy's loss but I could tell that just having a friend there was comforting to this youngster. It just doesn't seem right that any child should have to suffer the way these boys have.

As for what has been going on here lately, it's been kind of busy but in a good way. Monday I had a chance to catch up on some errands that I needed to run while Molly spent time with her grandmother. We had a "family movie night" on Monday evening and all watched Molly's new "favorite" movie...Ice Princess. On Tuesday, Molly's teacher (and my friend), "Miss" Nancy came to our house with her daughter, Morgan (for whom the Morgan Center is named), and we spent the whole morning and early afternoon in the pool and hanging out. That was great. It was so hot here that swimming was the only relief in sight. "Miss" Nancy and Morgan brought Molly an adorable Vera Bradley pocketbook and they stuffed it full of all of Molly's favorite things...nail polish, a mirror, lipstick, princess stickers and the like. Molly was *thrilled* with it. THANK YOU BOTH SO MUCH for your incredible generosity and great company. We had so much fun and hope we can do it again very, very soon. Molly did not want to say good-bye so that we could go to the clinic in the afternoon. She cried and cried at having to say good-bye to Morgan. Despite being upset, she had a good clinic visit. All continues to be well with her counts. Since she just completed a course of steroids, her ANC was nice and high and that is a good thing.

Today while Billy was at camp, Molly, Grandma Nora and I went to see "Sleeping Beauty" at Westbury Music Fair. We met Roly's cousin, Carla there along with Carla's daughter Alexandra and Roly's Aunt Sue. The show was cute and afterwards, we headed back to our house to swim yet again. We were joined by Carla's sister, Danielle and her son, Nicholas. Also, Uncle Eddy turned up too. Nora's brother Octavio and his wife, Daisy also stopped by along with Nora's dear friend, Terry. After that, both of my parents showed up. So.....it was a full house!! But everyone had fun and 4 pizza's later, everyone was fed and happy. Overall, it was a great afternoon.

On the technology front, I purchased a DVD recorder so that I can transfer our home movies onto DVDs. I really want to preserve those movies the best that I can because I want the kids to be able to enjoy them in the years to come. Carla has the same recorder as the one I purchased and she helped me to learn a few new tricks. Many thanks to you Carla!! Really, Roly was the technologically savvy one in our house so the fact that I can do *anything* correctly when it comes to electronics is almost a miracle. I think Roly would have been very proud to see how I am doing with this stuff. Roly was and I still am a big fan of the TV show, Saturday Night Live. Years ago, there was a skit called something like, "Ned, Your Company's Computer Guy." Basically, it was an ongoing skit of how every time someone needed technological assistance, they would call Ned. Instead of Ned showing the person how to fix the problem himself, he would say, "Just move!" and would throw around tons of technical lingo and fix the problem in such a way that he appeared brilliant. That was Roly. He was really smart and could figure out any technology problem that came up. I would tease him and call him Ned (or whatever that guy's name was)! He loved fixing electronics too. And he loved to tease me that he was brilliant and the only one in the family that could take care of computer, TV, VCR problems and the like. I never fought him on it because it was one less thing that I had to do (lol) but now, I am in remedial technology 101. Anyway, I am learning and doing well with it all and I just know he is smiling from heaven each time I conquer some new technology task.

I just wanted to also remind everyone that on August 13, 2005 there will be a canoe race to benefit Molly and another child in the area who is suffering from leukemia. Anyone who is local to Long Island and would like to participate, we would love to see you there. It really looks like it will be a great deal of fun. Some of our friends are already registered to race and we can't wait to see them out there in canoes!

Also, I want to thank those people who have already sent me letters for the kids' scrapbooks. I just know that a letter to them about their dad will be one of the most precious gifts they can and will receive.

Talk to you all soon. Thanks again for all of the support.

Love,
Donna

Sunday, July 24, 2005 10:17 PM CDT

I am finding the process of updating Molly's journal a little difficult as of late. I think it is because I don't want to keep repeating myself over and over about how sad I am and how much the kids miss their dad. I sometimes worry that people will get sick of hearing about our lives and the pain we are all experiencing. Everyone has been so wonderful to us and I hate to complain and whine, but I can't help how I feel. I keep waiting for things to get better and I guess in truth, they *are* better in some regards but overall, the impact of Roly's death is so profound that words don't do it justice.

One day at a time. That's what a lot of people say and what I myself have preached for many years. Take it one day at a time. And so, that is what I try to do. Not think too much about the past nor project too much into the future. I keep telling myself to stay in "the moment"...in the "here and now" and rely on God and our support network to see us through. But right now, in this moment, all I feel is pain and loss. I miss my husband. I miss my friend. I miss my partner, my soul mate. I miss sharing so much with Roly that right now, in this moment, it feels like more than I can bear. I am so tired of crying and feeling sad. I just want so badly...so badly to sit and have a conversation with him. To hold his hand. To feel his arms around me. To share a sarcastic joke. So many things and almost 4 months after his death, it still rather impossible to really comprehend what has happened. Still, I find myself shaking my head in disbelief. I want to scream at God, "OK, enough already. Whatever I am supposed to do, I'll do it. Just create a miracle and send Roly back to us." Yet I know that won't happen and I won't be reunited with him until it is my time to leave the earth. And while I want to be with him so very much, I pray that it won't be my time for a very long time because our kids really need me now more than ever.

I must say that immediately after Roly died, I felt like I was walking through "thick, bitter soup" and the "soup" was made of grief. It was suffocating and I could barely keep my thoughts together and sensible. The only thing that got me going then was the fact that I had kids who needed me to be their mom more than I needed to be a "mess." Now, the soup is not so thick but it is still bitter. While I don't walk around all day in a fog, there are moments that hit with such force, that I am overwhelmed by the intensity of my feelings and pain. I guess as I said before, one day at a time...sometimes it is just one moment at a time.

As for the day to day happenings around here, we have had a basically good week. From an outsider's view, I would guess that things look pretty "normal" around here. Roly's mom has been with us since last Friday and the kids couldn't be happier about that. They adore Nora and she adores them so that makes for a good time for everyone. Billy has done lots of fun things with camp lately. He went on a fishing trip on a charter boat and caught 3 fish. Of course, he threw them back because he couldn't even kill a spider or a fly, let alone a fish. But he enjoyed it nonetheless. He also went bowling with his camp and to a great pool. Today, he went to his good friend Jake's birthday party at the movies. He saw the Fantastic 4 and really liked it. Afterwards, we all went to Jake's house and spent the day with his family and friends. Both Billy and Molly had a blast. On Friday, we went to a church festival with my brother and parents and the kids had so much fun there too. Molly really loved the little rollercoaster. I just know she is going to be a daredevil. Not much scares her! I got a chance on Saturday to visit with a dear friend, Darlene. We met for lunch at a local restaurant and that was great. Darlene's mom and another mutual friend, Grace joined us and it was a wonderful visit all the way around. Darlene's mom has been saying the Rosary every day for our family since Roly died and I am so grateful to her for that, as well as to everyone who continues to pray for us. On Saturday, Billy had a playdate with his friend, Brandon. The boys went with Brandon's family to a local amusement park and what could be more fun than that? So, as you can tell, we have been busy.

This week should be another week packed with fun stuff. Molly has a clinic visit on Tuesday so we'll see what her counts are doing then. She looks terrific and her black eye is healing nicely, though the cut she has on the top of her foot still looks pretty bad. We''ll see what the doctor has to say about that.

Today is my youngest brother's 1st wedding anniversary. Happy Anniversary George and Crystal. May you have many, many more happy years together. We love you both.

Well, I guess that's it for now. I hope you all have a great week.

With love,
Donna

Tuesday, July 19, 2005 10:16 PM CDT

Hello friends,

I just wanted to give a quick update to let you all know that Molly's visit at the clinic went very well today, though it was long. Her counts continued to be good and today she started her monthly chemo cycle over again. Today, she received IV Vincristine, dexamethasone, 6MP and oral methotrexate. Steroids tend to make Molly very hungry and sometimes rather moody so we are in for a *fun* next few days. I am hoping that the vincristine doesn't cause too much constipation, as this tends to be an issue for Molly each month when she takes this drug. It also causes leg and jaw pain for her. Some kids we know call this drug "mean christine" instead of "vincristine". We can't blame them.

Today was the day that Billy and I went for a tour of Yankee Stadium. We met one of Roly's best friends, Andy and drove with him into the Bronx. Once there, we met some more of our friends and before we knew it, we were off on the tour. It was very interesting and a lot of fun. The first place we went was to monument park. That was really terrific, though we *melted* out there. It was SO HOT in NY today and the humidity must have been in the 90 percent range. Here is a picture of Billy with Mickey Mantle's monument:

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After visiting monument park, we were off to the actual Yankee dugout. We all sat in it and that was really fun. Then we saw the actual locker room. That was terrific. Jeter needs two lockers just to accommodate all of fan mail her gets! Bernie Williams (Billy's favorite Yankee) has the largest, most prized locker because at the present time, he is the player who has been on the Yankees the longest. No pictures were allowed to be taken here. After the locker room, we saw the press box and got to sit where all of the reporters sit. What a view! Here is a picture of Billy pretending to call in the latest score:

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Soon after, the tour ended. We are really had fun and want to especially thank Andy for treating us to this outing. Not only was it Andy's treat, but he flew in from Washington DC for the day to go with us. I always knew Roly picked great people for friends.

While the tour was really fantastic, again, like everything these days, it is a double-edged sword. On the one hand, it was great but the whole time, I kept thinking of how much Roly would have liked to have done this with his son. How much he would have enjoyed it himself. It is just so sad that he is not here to do these things and share such special moments. It literally hurts my heart when I think about it.

While Billy and I were off in the Bronx, Molly got treated to a live, musical performance of Cinderella. She went to the show with both of her grandmothers and really enjoyed it. However afterwards, she was jumping up and down in the ladies room and hit her face into a counter. Now she has an actual shiner!! A real black eye. Well, part of me is surprised it took her this long to get one...she is so active and fearless. Yesterday, she scraped the whole top of her foot. She was swimming in our pool and went to jump off of the diving board. She missed a step and fell right into the pool, scraping her foot on the concrete on her way into the water. I was right there and scooped her out but she did a number on her foot. Thank God her counts are good and the scrape did not cause any serious problems.

Billy and Molly are really enjoying visiting with their grandmother who is in from Florida for a couple of weeks. They always have so much fun with her.

I wanted to mention that I have already received a couple of letters for the kids' scrapbooks. THANK YOU, THANK YOU, and THANK YOU some more. I cannot tell you what those letters mean to me. You are all so wonderful to help out with this project. Also, thank you to everyone who comes by here to read this page. Your love, support and caring mean more than you could know. We are so grateful for all of the kindness that has been shared with us.

I have one last thing to add tonight. A dear friend, Denise shared with me tonight that she is pregnant with her 4th child. She has 3 boys already and number 4 was a bit of a surprise. My friend has had many miscarriages and very difficult pregnancies. Please keep her in your prayers, that this pregnancy is uneventful and produces a happy and healthy addition to her family.

Thank you all.

With much love,
Donna

Sunday, July 17, 2005 10:29 PM CDT

Hello everyone,

Well, another week has come and gone. I am happy to report that Molly seems to be doing really well. She was *SO HAPPY* to attend a full week of "dance camp" last week. Her dance instructor, "Miss Eileen" made the week so special not only for Molly but for all of the little girls who attended. In fact, the week went so well, that Miss Eileen is going to offer a second week of dance camp with new activities in August. Molly is really thrilled. I am keeping my fingers crossed that her counts will be good so that she can attend again.

While Molly was at camp, I got a little time to myself. It was much needed. One day, I went to breakfast, read the paper and then walked around the mall. Another day, I browsed in a bookstore and spent time shopping in Target without anyone (AKA "the kids") asking for toys or things they don't really want or need. One of the days, I attended to some paperwork and two of the days I was able to spend with my friend Nancy. Nancy belongs to a country club so we were able to sit by the pool and have lunch...again with no kids calling our names. Believe me, I adore my kids and love spending time with them but now more than ever, I find that I really need that occasional break, even if it is to do the mundane.

Billy had a good week himself. He really seems to love being at camp this year and I am happy about that. Sometimes I wonder if it is that camp is so much fun or if he just wants to be out of the house as much as possible, because Roly's absence is so painfully obvious to all of us at home. On Tuesday, Billy and I will be going on a tour of Yankee Stadium with our friend's son's boy scout troop. One of Roly's good friends, Andy, took the day off from work to take Billy. (Andy introduced me to Roly.) I plan to go on the tour but will kind of "hang back" so that Andy and Billy can have some time together. I have to admit though, I am looking forward to the tour myself. I know that this is something Roly really would have loved to have done with Billy and for that reason, thinking about Tuesday makes me feel a little sad. Roly really loved the Yankees, their stadium and the history of it all. He would have loved to have shared his passion for this team with Billy. I can't help but think of a time not too long ago when Roly's uncle came to the United States for a visit from Cuba. Roly's Uncle Roberto had not seen Roly's dad (his brother) for many, many years and the trip was very special to everyone in Roly's family. Roly took Roberto to Yankee Stadium and made sure that the scoreboard was lit with a greeting welcoming Roberto to New York. Roly even talked his way into Monument Park (though the area had closed for the night) so that Roberto could see it. He knew that this was his uncle's only opportunity to visit this place. Who could have known that it would have been Roly's only opportunity to view it too?

I try very hard not to spend too much time thinking about all of the things Roly is missing and that we are missing because he is no longer with us on this earth. Although those thoughts are so painful, it is hard not to "go there." I just assumed that Roly and I would always be together and never did I think that I would be raising our kids without him. I so want all of this to make some sense but none of it does. Sometimes I just want to scream out of sheer frustration!

On a happier note, Roly's mom is in New York for 2 weeks. She is staying with us and the kids are thrilled. They really love their grandma and are already having a great time playing with her. Even though Grandma Nora is used to swimming in a warm, Floridian pool, the kids managed to get her in *relatively* warm New York pool. Yesterday, we had a nice barbecue at our house to celebrate my dad's recent birthday. Today however, the pool was closed, as we woke to thunder and lightening and lots of rain. So, instead of swimming, we saw Charlie and the Chocolate Factory with my brother and his family. We also ran into some of our friends at the movie theater so the kids were once again, quite happy.

Well, I guess that is the news for now. I'll update again soon. I also want to thank everyone who e-mailed me or called to say that they will write a letter to the kids about their dad for their scrapbooks. This project means so much to me and I just know it will mean so much to the kids as well, especially as they grow up. Thank you from the bottom of my heart. And also, many, many thanks to all of you who continually check on us and leave us messages of love and support in our guestbook. I can't tell you how touched I am by all of your kind words and acts of compassion. Thank you all.

With much love,
Donna

Wednesday, July 13, 2005 11:48 PM CDT

Hello to everyone,

We have been having a fairly good week overall. I know that lots of you are praying for us because truly, I could not function without all of the support, love and prayers being sent our way. Thank you all for sticking by us and continuing to remember us.

Little Miss Molly has been having an absolutely wonderful time at "Dance Camp" this week. She so enjoys all of it...the dancing, the arts and crafts, the parachute play, the tea parties and most of all, being with other little girls. She wakes up happy and can't wait to get to the dance studio. Too bad that it only lasts for a week but her dance instructor is going to run a few classes over the summer and Molly will continue with those once "camp" is over. It is so wonderful to see Molly participate in something "normal." At camp, she is not a kid with cancer or a kid whose dad died. Rather there, she is just a 4 year old child having a great time.

Molly's appointment at the clinic this week was fine. Her counts were all very good and in fact, her hemoglobin went up considerably. We were so happy to get those good counts. Even her ANC has been staying up, so much so that now, her chemo has been increased a little bit. Let's hope it doesn't throw her back into a neutropenic state, or a state where she doesn't have enough infection fighting white blood cells to keep her strong and healthy. It's always a balancing act. While we were at the clinic, we saw our friend Harrison there. He is doing much better than he had been though he was being admitted for more chemotherapy. Please continue to remember him and his family, as they are going through so much now.

As for Billy, he has had a busy and fun week at camp himself. He enjoyed a trip to a local amusement park called "Adventureland," a trip to a great public pool with water slides and a fishing trip, though the last outing got canceled due to a bad rain storm. Instead of fishing, the kids went bowling and though disappointed about not being able to fish, everyone seemed to have a fun time at the bowling alley. After camp each day, both Billy and Molly have been enjoying swimming in our pool.

Today after dance camp was over, I took Molly with me to the cemetery. (Her camp is out east and so is the cemetery. We practically pass it each day on our way to and from camp). Molly has no preconceived notions about what the cemetery is and to her, it just looks like a pretty park. I told her that we were going to a place where we can think about and remember daddy. She asked if she could talk to him and I assured her that she could talk to him anywhere, anytime but that she would not hear him answer even though I know he hears her talking. It's all very confusing to her but she is really trying to figure it out. Before we stopped there, I picked up a bouquet of flowers to bring. Actually, Molly picked out a beautiful bunch of baby roses. As we were paying, the cashier said to Molly, "What beautiful flowers! Did you pick them out?" Molly answered, "Yes, they are for my daddy." The cashier smiled and said, "I bet he will just love them." Then Molly said, "My daddy is at the cemetery. He died in an accident." Well, the cashier looks at me in shock and I burst into tears. Then the cashier started to cry and so did another woman who was on line behind us. I couldn't wait to get out of the store. Sometimes it just happens like that. I see something, or hear something or one of the kids says something and the tears are there before you know it. The actual trip to the cemetery was OK. Molly asked a lot of questions and I answered them as honestly as possible, keeping in mind that she is only 4 years old. I didn't tell her that her dad was buried there because I thought that could have been too scary for her to imagine so instead, we just focused on remembering daddy. Before we left, I asked her if she wanted to say a prayer and this is what she said, "Dear God, please bring my daddy back to me." That just about did me in. We left and Molly slept the whole way home.

People ask me all of the time what they can do for us. Well, there really isn't much they can do other than continue to pray for us and think of us. However, there is one thing that I thought of that I could really use some help with. I want to create a special scrapbook for each child that is filled with letters to them from people who knew their dad. I am asking those of you who knew Roly, would you be so kind as to write the kids a letter about their dad? You could write about something you remember about him or a funny interaction you had with him or anything at all that you would like to write about and share with the children. As the kids grow up, I want them to have a sense of who their dad really was, not just from my perspective but from the perspective of others as well. It is my hope to fill these books with letters from family members, friends, coworkers, neighbors and anyone else who knew Roly and had some type of relationship with him. I hope that having something tangible like this will be a comfort to Billy and Molly as they grow up. I hope that it will help to keep their memories of their dad alive and sharp. I hope it will give them new memories that they themselves didn't have an opportunity to create.

For those of you who are willing and able to write the kids, could you just drop me an e-mail and let me know that you are willing to do that? There is no time line, no required length, spelling doesn't count, etc. Whenever you get to it, you get to it. For this and many other things, I am so grateful to you all.

With much love,
Donna

Sunday, July 10, 2005 7:47 AM CDT

Hi to all,

I kept on hoping that I would feel better before writing another journal entry, but that hasn't really happened. I still feel terrible so maybe writing about those feelings will help...nothing much else has.

I am beginning to realize that slowly....things are changing at home as we all try to adjust to life without Roly. And that makes me so damn sad. While it is a "good" thing that we are beginning to learn to live differently, I am so mad and sad that it has to be this way. You see, we didn't have a perfect, flawless, idyllic life before the accident. We had a lot to contend with, mainly Molly's illness. Because of leukemia, we *ALL* put our lives on hold for a bit. I stopped working in order to care for Molly. Molly stopped attending preschool. We didn't take the vacations we would have normally taken...no trip to the dude ranch for us. Too many animal germs, not close enough to a major hospital, just not safe to do so. And so on. We didn't have very many people over to visit or to play with Billy and we didn't go to other people's homes too often. You never knew what illness du jour could have been brewing. With the low counts Molly was contending with, it was just too risky. In fact, the one place we did visit...alot...was Schneider Children's' Hospital. The outpatient clinic, ER and Med 2 were all "second homes to us." I think that at the time of Roly's death, we had 12 emergency inpatient admissions for fevers, neutrepenia, dehydration and excessive bleeding from Molly's nose.

In addition to the physical changes that took place in our lives, we were worried and so scared, especially in the beginning of our journey with leukemia. Our child had cancer. How could that be and how would we beat it? We educated ourselves and met with a host of doctors. We followed all of their instructions to the letter. We prayed and fasted and went to church and promised God we would be even better Christians..."just please heal Molly." Last summer, Molly began the long term maintenance portion of her chemotherapy. It is scheduled to last about 2 years. The chemo, though still given every single day in some form or another, is less harsh and therefore leaves Molly with fewer side effects and emergency situations. From the time Molly began maintenance, she had NO hospitalizations, that is until Roly died. Interestingly, she has had a few hospital stays since then. Anyway, back to the last year...once Molly began maintenance, things improved. Though precautions still had to be taken, we felt more comfortable and secure. We felt so optimistic and less scared...we were on our way to beating this monster. Billy began to have more play dates, I started to see patients again in my private practice, we started spending more time with friends and family members and in general, we breathed a sigh of relief. We were beginning to get our lives back. Less than 2 weeks before Roly died, we went to Disney for Molly's Make-A-Wish trip. We had the absolute *BEST* time. Though you can never truly "forget" cancer (especially with all of the medications that have to be taken), being away with Make-A-Wish was the closest we came to that since the diagnosis. We were all SO HAPPY. We have the best memories from the trip. What made it even more special was that Roly's Floridian family got to join us for part of the trip so we were all together, something that is a hard feat to accomplish even without having a sick child. By a stroke of incredible luck, Roly's first cousin Michael (who was like a brother to Roly growing up) had scheduled an anniversary trip to Disney with his wife Laurie, and their beautiful little girl, Julia for part of the time that we were going to be there. Michael lives in TN and because of Molly's illness, we had not been able to travel to meet the newest addition to the family. So, the trip was truly joyous because we were all together and because really, we all so enjoy each other's company. Like I said before, we didn't have a perfect, flawless, idyllic life before the accident but things were looking up and *we had each other*. Now, I can't help but feel cheated sometimes and still so sad. It's so not fair that this happened. Yet truly, I am grateful beyond words that I did have Roly in my life.

If Roly was to walk through the front door right now (God, I would give both my kidneys and live on dialysis for that), I would have to "catch him up" on some stuff. Like the fact that Molly is potty trained and no longer drinking out of "sippy cups" most of the time. She is beginning to grow up...and he is not here for it. She is not exactly the same as when he left us and for that matter, I guess none of us are. That bothers me. I would have to tell Roly that Billy is reading real chapter books...and liking them. That he actually wants to write in his journal. That he really improved in baseball. I want things back the way they were but I know that will never be. It just literally hurts my heart that this is so.

Today is Sunday and we are going to another baseball game with the Morgan Center. We will be seeing the LI Ducks play but more importantly, we will be seeing some of our dear friends. When we get home, hopefully the pool will be warm enough for a swim. We have had a lot of rain here and that tends to make the pool cold but it is supposed to be hot for the next few days. Molly, God willing, will be attending "dance camp" next week. For one week, from 9 am until 1 PM, Molly will be with other little girls and her dance teacher enjoying princess tea parties, Hawaiian luaus, learning new dance steps and the like. The dance studio is kind of far from our home but one of my friends, Nancy (who is also Molly's teacher from the Morgan Center) lives near by and she has set up "Camp Nancy and Donna" for us that week. I think one day will be spent by the pool, one day getting manicures, one day shopping, etc. So that should be really nice. On Friday, my mother-in-law is coming to town for a visit. The kids can't wait and I am looking forward to being with her as well.

Well, I guess that is the news for now. Talk to you all soon.

With love,
Donna

Thursday, July 7, 2005 9:56 PM CDT

Hi everyone,

I just wanted to thank you all from the bottom of my heart for the incredible messages of support and compassion I received in relation to my wedding anniversary. The people that comprise the caringbridge community are awesome. Your words brought me lots of comfort and strength and I thank you so much for that. Thank you all for the prayers as well. They continue to sustain us.

Little Miss Molly is amazing. I am so thankful that she has been feeling well this week. She has been spending a good portion of her free time listening to CD's and dancing in the living room while watching her reflection in the TV screen. She is really too funny. The big news...she is *finally* potty trained! Yahoo! She was ready a long time ago but between the chemo and all it does to her stomach and Roly's death, I didn't push it. Finally, she showed some genuine interest and desire and viola, she is trained. (OK, it took a bunch of stuff from Toys R Us too but at least she is trained.) Today she was doing something she wasn't supposed to be doing. I think she was climbing on something and I told her to get down. Her response? And I am telling the truth here..."Mom, you are going to give me a *breakdown*." Can you believe that? A breakdown???? She is really going to be some teenager friends.

As for a quick update on Billy, he is doing pretty well overall. He is really liking camp this year. He says that he loves his counselors and the other boys in his group. I am so happy for him. He really needs to enjoy himself. He has some summer reading assignments and now he is reading, "Charlie and the Chocolate Factory." He is really enjoying it. I told him I want him to finish it before we see the new movie coming out. So, the child is motivated to complete the book!

Tonight, Billy and I went to a summer bereavement group. Billy meets in a group with other children separate from me. He seemed to enjoy himself and before he went to bed, he had some more questions about Roly's death and we spoke a bit more openly about his dad. It was good to be able to do that. I know Billy is hurting so anything that will help him is supported by me. I liked my group as well. The people in it were lovely. Everyone has a very sad story. But there was also a lot of strength in the room and that was good to see. We will go every Thursday. There is no group for Molly at this agency so she gets to have 1:1 time with her grandparents. Lucky Molly.

I also wanted to let those of you who are in the Long Island area know that on August 13, 2005, the Massapequa Fire Department is putting on a canoe race which will benefit our family and the family of another young man in the area who is also suffering from leukemia. It looks like it is going to be a lot of fun so if you are near Massapequa and are into canoeing, why not consider racing? If you are not into racing, then come and join us in watching all of these incredible people as they paddle their way to victory. I think everyone will have a great time. We want to thank all of those participating and watching. You are all so special.

Well, I guess that is the news for now. I'll update more very soon.

With love,
Donna

Wednesday, July 6, 2005 10:26 PM CDT

Hello everyone,

So, another "first" has come and just about gone. Today, 20 years ago I went on my very first date with my husband. Roly took me to the movies to see "Witness." It was playing in the movie theater right across the street from the diner my parents owned. (We are Greek and for those of you who don't know the unofficial rule, if you are an immigrant from Greece, at some point or another, you will own and operate a diner or coffee shop. Think "My Big Fat Greek Wedding"). After the movie, we naturally went across the street to see my dad and have a bite to eat. Roly (which is short for Rolando) was not Greek. He was Cuban. And if you recall "My Big Fat Greek Wedding," you will know that Greeks generally don't like their daughters to date non-Greeks. So for quite a while, I heard a lot of, "Don't get serious with him Donna. He's not Greek." However, Roly won them over to the point that I often thought they liked him better than me. My grandmother (whose name was Mollie) lived with me my whole life. She was like a second mom and she is the one my Molly is named for. Any time Roly and I disagreed she'd automatically say, "Oh, what did you do now Donna? Roly is such a nice boy it has to be your fault"! God bless Grandma. She called it the way she saw it.

After dating for 6 years, Roly and I were married on the anniversary of our first date. And did we ever have a "BIG FAT GREEK WEDDING." In fact, when the movie came out, Roly and I howled with laughter. It was like watching our whole courtship and wedding on the big screen. We didn't even realize how funny our lives were until we saw it right in front of us. There were over 300 guests at our wedding. I wore the biggest, fanciest, beaded white wedding gown ever made. My head piece consisted of a crystal and pearl tiara with a pouffy veil that was a mile high. I *was* the Snow Queen. Our wedding party was large, consisting of siblings, cousins and friends. We had 2 flower girls and a ring bearer. The girls wore a floral Waverly print that was called "Sweet Violet" and now I see the pattern everywhere on lamp shades and placemats. On the day of the wedding, it was hot. Very hot. And a Greek service is...let's say long. Despite the heat, I will never, ever forget my husband's face as I saw him when I walked down that aisle. He was actually crying. Later he told me that I was so beautiful that he could not help but cry. That was the sweet man I married. Me? I did not cry. I had my make-up professionally done that day and I was determined not to smudge one drop of it before the pictures were over. See what I mean? He was definitely the "better" half in this marriage.

Back to the wedding. It was hot and the service was long. Of course, I had a full choir to sing the parts that were supposed to be chanted by a single voice. (It did sound awesome though.) The Greek priest just could not get Roly's name straight. He continually called him "Ronaldo" instead of "Rolando." At one point after watching us laugh each time he said Roly's name incorrectly (and you actually can hear this on the video tape), the priest said, "All right, all right. Let's get the name straight. What's your name again??" Roly replied, "Rolando." The priest said, "And what did I say?" Roly said, "Ronaldo." The priest then says, "Oh, it's close enough" and he proceeds on. That just cracked us all up.

Following the wedding and the receiving line that would not end, Roly and I darted the rice that was sitting in handmade, silk roses that my mom obsessed over for weeks before. We ran to the limo which Roly had filled with tons of helium balloons. (I know, not good for the environment but we were young and in love.) We took pictures and then headed to the reception.

Once at the reception, I got to see many of my family members that flew in from around the country. Roly's family (though clearly outnumbered by the Greeks) came from all over too. My paternal grandfather came from Greece and I had not seen him in years. He was filled with cancer when he came and never made it back to his home. He died just a couple of months after the wedding. But that day, he danced and smiled and loved every minute of being with his siblings and children and grandchildren. It was a glorious moment to see him dance despite his illness and pain. There was a lot of Greek dancing that went on that evening, even by the non-Greeks. In addition to the large Greek band we had, we also had an American DJ. And an Elvis impersonator. He was Elvis in "the later years" shall we say. Don't ask why. That's a story for another day. Anyway, we all had so much fun. Roly and I danced our first dance to Ray Charles' rendition of "Come Rain or Come Shine." And then we danced all night. We both smiled so much that our faces hurt by the end of the night. And the next day, we were off on a Hawaiian honeymoon for 2 weeks. It was one of the best times of our lives. We thoroughly enjoyed ourselves, every minute of it.

And now, 20 years after our first day and 14 years after we became man and wife in the eyes of God, I sit here typing this...alone. My husband has gone ahead of me way too soon. It is so unfair. It feels so wrong. I miss him so much. More than these darn keys can express. I miss my friend, my confidant, my buddy, my lover. I miss snuggling next to him each night in bed. I miss the security I felt when I was near him. I miss his voice. I miss his beautiful eyes and thick hair. I miss his laugh. I miss his corny jokes. I miss his incessant comments about the Yankees and his latest theory on who killed JFK. I miss him "drumming" with his hands as he drove. I miss him tickling the kids and winding them up too much before bed. I miss him stepping in to referee when I wanted a break. I even miss his huge feet. I miss it all. I want him back and I am so very sad that he is gone.

I have said it before and I will say it again, I have the best friends and family members. So many remembered today and knew what a difficult day it would be. Amy and Neil sent me beautiful flowers to brighten the day...thank you guys. Christine and Eileen took me out to eat...thank you both. So many of you called or e-mailed. You know who you are. Thank you a thousand times over.

I will update with information about Molly very soon. For now, she is doing well and all is stable.

Thank you all again.

With love,
Donna

Wednesday, July 6, 2005 2:05 EST

Update: Just wanted to let you know that the guestbook portion of the webpage has been fixed. Unfortunately, all of those entries from July 1, 2005 until today have been lost but thankfully not any more than that. The technicians at caringbridge are really great. Many thanks to them!

Love,
Donna

Tuesday, July 5, 2005 7:05 PM CDT Hello everyone,

I just wanted to write to tell you that we are all doing OK. Though the weekend was very difficult, we got through it and actually enjoyed it too. Yesterday, I did end up hosting a barbecue that was larger than I originally envisioned. I thought I would just have my parents and brother over at first but then I figured if I was cooking for some, then why not some more? My parents helped me a great deal. Without them, I could not have pulled it off. There were about 16 adults here along with 10 kids. Everyone had fun, the kids especially as they really enjoyed swimming in the pool. At one point when I began to clean the grill, my 3-year-old niece Sophia asked me, "Is Uncle Roly going to cook soon?" I explained to her that he was not and she asked me lots of questions. Following almost every answer, she asked "why." How I wish I could have answered those questions, not just for Sophia but for me too. Still, no good answers.

Today, Molly and I went to the clinic. Her main oncologist saw her and all was well. Her counts were fine (ANC was about 1900) but she is still a little iron deficient. Her doctor increased one of Molly's oral chemo medications, methotrexate. Molly received the prophylactic antibiotic she gets each month, pentamidine. That is administered intravenously. She saw her friends from the Morgan Center there and that helped pass the time. She is scheduled for her next check up and counts in a week.

Tomorrow would have been Roly and my 14th wedding anniversary. I cannot believe that instead of going out to dinner at a restaurant I will be visiting the cemetery. It is still so surreal. Roly and I would always watch our wedding video on or near our anniversary. I want to watch it but I don't know if I can just yet. We'll see. Any extra prayers you have to offer will surely be appreciated tomorrow.

In case some of you are wondering, the guestbook portion of Molly's page is not working right now. I spoke to caringbridge and they told me that the file has become "corrupt." They are working on fixing it but it could take a couple of days. I just hope I don't lose all of the incredible entries that have been left for us by so many of you. I am going to stay hopeful for now. If anyone wants or needs to contact me, feel free to e-mail me. The address is at the bottom of the page. Just be sure to put caringbridge somewhere in the subject line as I don't usually like to open e-mails unless I know who they are from.

OK, speak to you all soon.

Love,
Donna

Saturday, July 2, 2005 11:01 PM CDT

Hello friends,

I cannot believe it is already the 4th of July weekend. I am finding it to be a very difficult time. July 4th weekend was always very celebratory in our house. Roly and I were married on July 6, 1991 (though we dated for many years before the wedding. In fact, our first date was on July 6th and that is why we picked the date for our wedding). We typically hosted a big barbecue this weekend for our family and friends. It was always so much fun...lots of kids (and grown-ups) in the pool, Roly at the grill cooking everything to perfection, jokes and stories from years ago, music blaring and the like. Last year, we didn't host our usual "bash" because Molly was just beginning to recover from some very intense chemo but we still had fun going to baseball games (of course) and spending time with our friends. This year, it feels so very *empty* and quiet without Roly by our sides. Truly, my heart aches with so much sadness not only because I no longer have Roly with me, but also because the kids don't have their dad to share their daily experiences with.

Despite the empty and lonely feelings that are always with me, I am determined to try to maintain some joy and normalcy in our lives. I cannot do anything about the fact that the kids lost their dad so tragically but I simply refuse to allow them to lose their mother to grief too. So, with heavy, heavy hearts we carry on with the business of life. Last night, Billy and I went to the movies. We saw "Bewitched," which was lighthearted and funny. Just the right type of movie for me and I think Billy liked it too. I know he thinks he would have preferred "Batman" but I thought the content might have been a bit too "dark" for him right now. Molly spent the evening with my mom and dad at their house and she so enjoyed all of the special attention her grandparents gave her. They cooked her dinner and she ate so much I'm afraid my parents will think I don't feed her at home. Then she took a bath in their Jacuzzi tub, which she loves. A girl after my own heart. Today, I took the kids to CT to visit with our dear friends, Amy and Neil. It was a long drive (about 2 hours each way) but I did it without getting lost or frazzled. During the ride, the kids watched movies on their DVD players and I got to listen to some of my music (for a change) on the way up and the Yankee game on the way home (way to go Yankees)! Amy and Neil recently purchased a very beautiful home in Ridgefield, CT and today was the first time I had been there. We all had a really nice time at the barbecue and as always, it was great to visit with our friends. Tim and Karine and Andy and Victoria were there were their children. Roly would have so enjoyed being with everyone. I really missed having him by my side today.

Tomorrow, we have been invited to a few different places however I think we will stay close to home and spend the afternoon with our neighbors. On Monday, I am thinking that I would like to have a small barbecue here. I could not pull off the type of get together I used to do with Roly but I would like to see some of our close friends and family members. So perhaps a few burgers and hot dogs on the grill will do the trick. I am learning how to use the grill finally. Though I am a decent cook, I never learned how to grill because Roly was always so terrific at it.

As for Molly, she looks well and is acting OK, though she sounds like she is losing her voice a little. When I said that to her, Billy asked where we lost it and how would we find it again. Well, at least they keep me smiling for part of the day.

I hope you all enjoy the holiday weekend. Happy Birthday America and may God bless you and all of your people now and forever more.

With love,
Donna

Wednesday, June 29, 2005 11:55 PM

Update:

I just wanted to let everyone know that Molly did well at the clinic yesterday. Her counts were all up...way up thanks to the steroids she was on. Her white blood cell count went from practically nonexistent to over 11.0 and her ANC (which had been so low that it kept us in the hospital for a week) rose to over 8,000! Even her hemoglobin was up as were her platelets. The only thing the blood work showed that was just a little bit of a concern is that Molly is slightly iron deficient, probably from all of the nosebleeds she has had. So, it's steak and spinach for us as we hope to avoid iron pills which are not pleasant to take.

As an aside, Molly was on 60 Minutes tonight. About a year ago, a story was done at our hospital about an organization, "Songs of Love" that writes personalized songs for children with life threatening illnesses. A few kids from the clinic were featured. Molly was seen in the background in the beginning and at the end of the segment. Unfortunately, I didn't know it was going to be on, so I didn't watch or tape it but Tiffany, one of my on-line friends from the e-mail list I belong to for parents of kids with ALL saw it and taped it and so I should get to see it soon. Thank you Tiffany!!

Monday, June 27, 2005 10:59 PM CDT Hello everyone,

We have been busy over the past few days. Most of the time, being "busy" is a good thing...it keeps us occupied and distracted at least for a little while. Billy finished "mini-camp" at his school on Friday and in the afternoon, we enjoyed visiting with our neighbors that live directly across the street from us, the Kellys. Billy and Molly swam in their pool, though Molly didn't last long because she decided it was too cold for her. Billy had a lot of fun though playing with the Kellys' daughter, Samantha and some other friends.

On Saturday, my brother and his family came over to our house. We swam in our pool, which was surprisingly warm. It was the first time we were all in together this season. It was nice to relax and have fun swimming although again, it was another "first" without Roly. The kids loved to swim with him. They would get him to do "cannon balls" and silly tricks off the diving board. Molly especially loved being held by Roly in the pool. So many of the pictures I have of her in the pool are nestled in Roly's big arms. I missed him so much that afternoon.

In the evening, we attended a "Long Island Ducks" baseball game with the N. Bellmore/N. Merrick Little League. The Ducks play in a nice stadium that is not too big and very family oriented. It was a beautiful evening. Billy was thrilled to sit with his teammates and Molly was happy to be with me and her cousins as well as some of our close friends.

Believe it or not, on Sunday we attended another Long Island Ducks game, this time with Molly's preschool, the Morgan Center. You can never have too much baseball in our house! What was especially nice about Sunday's game was that we were seated in a "sky box." Basically, there was an air-conditioned room with comfy couches, a television, tons of cold drinks and lots of food. There were sliders that led to outside seats that were fabulous and contained, so the kids couldn't "go" anywhere. Morgan, the daughter of our friends Nancy and Rod, for whom the Morgan Center was named, threw out the first pitch. That was exciting. We got a visit in the suite by "QuackerJack" the Duck, who is the costumed mascot of the L.I. Ducks team. The kids loved that. At the end of the game, the children got to run around the bases. Billy really enjoyed that while Molly and I watched from our seats above. Last year we did the same thing with the Morgan Center. It was amazing to me that as soon as we entered the stadium, Molly said to me, "I remember this place. Last year Daddy walked me up and down and up and down here." And he did. What she can recall and with such detail is amazing to me. It gives me hope that she will retain some of her precious memories of her dad despite her young age. She is really a remarkable little girl.

Today, Billy began "real" summer camp. He will be attending a local day camp where he has gone for the past few years. He was very excited to see some of his friends from previous years. He told me that he had a great time today. He also shared that each child was asked to introduce himself to the group and to tell something about himself. Billy said that he said the following, "Hi, my name is Billy. My dad died when he was hit by a train a few months ago and my sister has leukemia. And I like candy." Well, how is that for a conversation stopper? I guess it is so raw and in the forefront of his mind that it just came out like that. I hope now that he has shared it, he will be able to just have fun and enjoy the summer. Eight year olds should just have fun. I hate that he has any of this to think and worry about.

I want to thank all of you who continue to uplift and support us. Those of you who repeatedly check on us and sign our guestbook...thank you so very much. So many of you have sent cards, trinkets, gifts, books and more by "snail mail" and I thank you all SO MUCH as well. I hesitate to single any person out here because there have been SO MANY people that have done so much to help us. Please know that each one of you holds a very dear place in my heart and the hearts of our kids.

I also wanted to share a passage that I read in a book that was sent to me by an on-line friend, Anne. In her book for widows, "Beginnings," Betty Jane Wylie writes, "Grief is very like fear." She quotes C.S. Lewis who said, "Perhaps, more strictly like suspense. Or like waiting; just hanging about waiting for something to happen. It gives life a permanently provisional feeling." Then Ms. Wylie adds, "Grief is an agonized apprehension of *something that has already happened*. It's standing at the edge of a void, a very recently carved hole that has forced a change in your direction. It is knowing, with a sinking feeling in your gut, that you have to go on, alone, and that's painful."

For right now, that about sums up how I am feeling. Anxious. Apprehensive. Lonely. Afraid. I believe that it will get better but to be honest, right now, it sure does stink.

On that note, I will say goodnight. Tomorrow, Molly has another clinic visit. I will let you all know how she does.

Thanks again.

With love,
Donna

Monday, June 27, 2005 10:59 PM CDT

Hello everyone,

We have been busy over the past few days. Most of the time, being "busy" is a good thing...it keeps us occupied and distracted at least for a little while. Billy finished "mini-camp" at his school on Friday and in the afternoon, we enjoyed visiting with our neighbors that live directly across the street from us, the Kellys. Billy and Molly swam in their pool, though Molly didn't last long because she decided it was too cold for her. Billy had a lot of fun though playing with the Kellys' daughter, Samantha and some other friends.

On Saturday, my brother and his family came over to our house. We swam in our pool, which was surprisingly warm. It was the first time we were all in together this season. It was nice to relax and have fun swimming although again, it was another "first" without Roly. The kids loved to swim with him. They would get him to do "cannon balls" and silly tricks off the diving board. Molly especially loved being held by Roly in the pool. So many of the pictures I have of her in the pool are nestled in Roly's big arms. I missed him so much that afternoon.

In the evening, we attended a "Long Island Ducks" baseball game with the N. Bellmore/N. Merrick Little League. The Ducks play in a nice stadium that is not too big and very family oriented. It was a beautiful evening. Billy was thrilled to sit with his teammates and Molly was happy to be with me and her cousins as well as some of our close friends.

Believe it or not, on Sunday we attended another Long Island Ducks game, this time with Molly's preschool, the Morgan Center. You can never have too much baseball in our house! What was especially nice about Sunday's game was that we were seated in a "sky box." Basically, there was an air-conditioned room with comfy couches, a television, tons of cold drinks and lots of food. There were sliders that led to outside seats that were fabulous and contained, so the kids couldn't "go" anywhere. Morgan, the daughter of our friends Nancy and Rod, for whom the Morgan Center was named, threw out the first pitch. That was exciting. We got a visit in the suite by "QuackerJack" the Duck, who is the costumed mascot of the L.I. Ducks team. The kids loved that. At the end of the game, the children got to run around the bases. Billy really enjoyed that while Molly and I watched from our seats above. Last year we did the same thing with the Morgan Center. It was amazing to me that as soon as we entered the stadium, Molly said to me, "I remember this place. Last year Daddy walked me up and down and up and down here." And he did. What she can recall and with such detail is amazing to me. It gives me hope that she will retain some of her precious memories of her dad despite her young age. She is really a remarkable little girl.

Today, Billy began "real" summer camp. He will be attending a local day camp where he has gone for the past few years. He was very excited to see some of his friends from previous years. He told me that he had a great time today. He also shared that each child was asked to introduce himself to the group and to tell something about himself. Billy said that he said the following, "Hi, my name is Billy. My dad died when he was hit by a train a few months ago and my sister has leukemia. And I like candy." Well, how is that for a conversation stopper? I guess it is so raw and in the forefront of his mind that it just came out like that. I hope now that he has shared it, he will be able to just have fun and enjoy the summer. Eight year olds should just have fun. I hate that he has any of this to think and worry about it.

I want to thank all of you who continue to uplift and support us. Those of you who repeatedly check on us and sign our guestbook...thank you so very much. So many of you have sent cards, trinkets, gifts, books and more by "snail mail" and I thank you all SO MUCH as well. I hesitate to single any person out here because there have been SO MANY people that have done so much to help us. Please know that each one of you holds a very dear place in my heart and the hearts of our kids.

I also wanted to share a passage that I read in a book that was sent to me by an on-line friend, Anne. In her book for widows, "Beginnings," Betty Jane Wylie writes, "Grief is very like fear." She quotes C.S. Lewis who said, "Perhaps, more strictly like suspense. Or like waiting; just hanging about waiting for something to happen. It gives life a permanently provisional feeling." Then Ms. Wylie adds, "Grief is an agonized apprehension of *something that has already happened*. It's standing at the edge of a void, a very recently carved hole that has forced a change in your direction. It is knowing, with a sinking feeling in your gut, that you have to go on, alone, and that's painful." For right now, that about sums up how I am feeling. Anxious. Apprehensive. Lonely. Afraid. I believe that it will get better but to be honest, right now, it sure does stink.

On that note, I will say goodnight. Tomorrow, Molly has another clinic visit. I will let you all know how she does.

Thanks again.

With love,
Donna

Monday, June 27, 2005 10:59 PM CDT

Thursday, June 23, 2005 9:37 PM CDT

Hello Everyone,

Well, as you can tell from the above new picture, Molly was happy as can be today to get her *FIRST REAL HAIRCUT*!! Yes friends, she is four years old and finally has enough hair to get a trim. We went to my friend Renee's house where Molly and I both got some royal treatment. Renee is an awesome hair stylist and she couldn't be kinder. Molly had a ball and I was so happy to get a trim of my own, along with some color to cover those grays of course!!

Yesterday at the clinic, everything was fine. Molly and I arrived early and she got her port accessed and her lab work done. Her ANC had reached a little over 1,000 thanks to the GCSF and her hemoglobin was up a bit too (it is now in the 9.5 range). Molly received a transfusion of "fresh frozen plasma" or "FFP" prior to the intrathecal (spinal) methotrexate she received. "FFP" is given to Molly before any invasive procedure because it was discovered a few months ago that she has a mild "Factor 7" deficiency. A "Factor 7" deficiency can affect one's clotting ability. Molly's deficiency is not really a big deal in terms of severity but to err on the side of caution, she gets the FFP before they do anything that can cause her to bleed. She also received IV vincristine and started back on 5 days of dexamethasone (steroids). The vincristine is already causing some pain in her legs and the steroids really impact on her mood, behavior and appetite. While on steroids, Molly can be very moody, prone to outbursts and overly clingy too. She eats like crazy and especially craves salty foods like salami, pepperoni and bacon. Say a prayer that I am able to remain patient with Molly's ever increasing demands for food and attention at all times! We have stocked up on all of the food necessities so we should be OK in that area. Seriously though, my heart goes out to her because I know that she truly does not feel her best when she is on all of these medications.

As for me, I feel like I am still living in this weird parallel universe that consists of a world that is so similar to the life I knew prior to Roly's death yet is so very different at the same time. With each day that passes, I miss Roly more. It has been almost 3 months since he died. So often, I still can't believe it happened. I call his cell phone just to hear his voice on the outgoing message. I have to admit that often, I leave him a message. I just miss talking to him and sharing with him my life and the lives of our kids. I went to the cemetery this week. I got a notice in the mail that the "memorial plate" had been installed at the grave and I wanted to go. I cannot even begin to tell you what is was like to stand there and see my dear, sweet husband's name engraved on this marker. The pain of this loss is not just emotional it is physical too. I felt like I had been punched in the gut so hard that I could no longer breathe. It's so unfair!! Sometimes I just want to scream at the top of my lungs..."WHY, WHY, WHY???? Please, someone tell me WHY?" Intellectually, I know I will never have that answer but God, do I want it. The kids, especially Billy, have been talking more about their own feelings of loss. Billy has been telling me with more frequency that he misses his dad and I can actually *see* his pain from the expression on his face. He is struggling himself to make sense of all of this.

I want to share something that happened a few days ago. It gave me chills and I haven't been able to get it out of my head. The other evening, I was driving home from my brother's house with both kids in the back seat. Billy wanted to talk about his dad. He told me that God must have a very special job in heaven for his dad. He asked me if I knew what type of job it was. I asked him what he thought and he told me that maybe his dad was God's "computer director" because "maybe the guy who did it before daddy wasn't really good at it." I smiled at that and said perhaps. Then, Molly said very seriously and adamently..."That is not daddy's job!" So I asked, "Well, what do you think his job is?" Molly replied in a calm and firm manner, "His job is to save me." Well, I couldn't believe what she said. So I asked her again, and she said the same thing. How would such a young child have the concept that she needs "saving"? She doesn't even really know much about what leukemia is and she certainly doesn't have the cognitive understanding that this is a life threatening illness. Yet, she was steadfast that Roly was in heaven to "save" her. I just had to share that. I haven't been able to stop thinking about it since she said it. I have to believe that he is a guardian angel to her.

Well, it is late again so I will say goodnight for now. I will try to update again very soon.

With much love,
Donna

Monday, June 20, 2005 9:31 PM CDT

Good news finally!! We were discharged today and are now back at home. Though I am very happy for Molly and me, I think I am most happy for Billy who missed us very much. Molly's ANC is now around 500. That is with the help of a medication called GCSF or neupogen which stimulates the white blood cells to grow. Molly received another injection of GCSF today before we left the hospital. Again, it was very traumatic for her. She *HATES* getting shots. We need to return to the clinic very early on Wednesday morning, as Molly is scheduled for a transfusion of FFP before her spinal tap and intrathecal chemo. She has already been delayed a week with this and the doctors don't want to wait too much longer to get back on to active treatment.

THANK YOU, THANK YOU, AND THANK YOU AGAIN for all of the prayers, good wishes and kind thoughts. It helps to know so many people are pulling for you when the "chips are down". We really do feel the love and support being sent our way.

Our friend, Harrison, remains in the hospital. Even though he is somewhat better from the belly pain he was experiencing, he is now scheduled for a 6 day inpatient stay to receive chemotherapy. Harrison is being treated for relapsed Wilms' Tumor. Please keep him and his family in your prayers.

With much love and gratitude,
Donna

Sunday, June 19, 2005 6:40 PM CDT

Hello again,

First off, I can't thank everyone enough for all of the kind messages and e-mails of support you have sent us recently. I don't think I could do what I am doing without the support and prayers that have been offered for us. Thank you from the bottom of our hearts.

Molly remains hospitalized with the same ANC...180. Her neutrophils are just not moving. The doctor doubled her dose of GCSF with the hope that the marrow begins to recover already. The GCSF is given via a subcutaneous injection and Molly *HATES* it. It took three people to hold her today in order to administer it. That really breaks my heart. She works herself up into such a state over it. Other than that, she remains in rather good spirits. She continues to share her room with Harrison, our good friend from the Morgan Center. I am SO thankful that Danielle, Harrison's mom is there with me though I wish that we were all home by now.

My dad is with Molly at the hospital now. My mom was there earlier. I left in the afternoon to spend some time with Billy. Yesterday, he spent the day with his good friends from school. Some of his classmates play on the same baseball team so Billy went and watched the game. He was thrilled to do that. Afterwards, he went out to dinner with three of the families and he slept over his friend Brandon's house. He had a great time and I am indebted to Brandon's mom and dad for taking such good care of Billy. This afternoon, I took Brandon and Billy to the movies to see "Shark Boy and Lava Girl", a new 3D film. The kids liked it.

After the movie, Billy and I talked for a bit about Roly. He gets so sad when we talk about him but I don't want to avoid the topic either. Billy loved his dad so very deeply. I told him that he and Molly were the two things on this earth that brought his dad the greatest joy and he should feel proud and happy about that. I told him that his dad still loves him and even though he is not here on this earth, he is sending so much love to him from heaven. I told him that I could hug him extra tight and he could imagine that the hug is from Roly.

For me, I am so sad today but then again, I am so sad everyday that goes by without my husband to hold and love. I still shake my head in disbelief so much of the time. How...Why...How...Why...over and over and over. There are no answers. Only frustration and sadness and sometimes hope that things will get better and that God will help us through this. I was reminded today that it is now when I should lean the most on God yet it is now that is difficult to do so sometimes because of all of the pain. I am trying so hard to keep my head above the water yet all of that treading gets tiring.

I'll update again tomorrow...hopefully with news of better counts.

With love,
Donna

Saturday, June 18, 2005 8:43 PM CDT

Hello,

Well, Molly is *still* in the hospital. Her counts haven't budged and we are stuck inpatient until they do. It has been very frustrating for us all. I have to keep this short, because I am running back to the hospital now. I just came home to get some clean clothes and to get some things for Billy, who will be sleeping over his friend's house tonight. Bad enough not to have his dad tomorrow on Father's Day but to not even wake up with his mom and sister at home...well, you can imagine. I am really beginning to feel the stress from this week. Lots of tears have been shed today. Please say a prayer that Molly gets better soon and that we somehow manage to get through tomorrow.

With much love,
Donna

Friday, June 17, 2005 6:21 PM CDT

Hello again,

I wish I could tell you that we're home from the hospital but we are not. Molly continues to be hospitalized for low counts. Her ANC is not budging and today her doctor prescribed an injection of GCSF or neupogen to try to stimulate her white blood cells to recover. They don't generally like to do this with leukemia because after all, leukemia is a cancer in which immature white blood cells called "blasts" take over the marrow and push out all of the other needed blood cells. Stimulating white blood cell growth is a bit of a theoretical concern although I don't think there is really any hard data that it is dangerous to kids with leukemia. Since Molly has been off chemo for most of the week and she is already delayed by one week in receiving her "heavy" intrathecal chemo, the doctor wants her counts to recover so she can get back on track. That's why he prescribed the GCSF. We'll see what tomorrow brings. She was NOT happy to receive the shot but she got through it. She was however quite happy to go outside into a courtyard at the hospital today to play with some of the other patients and the child life specialist, Sarah whom Molly adores. The kids engaged in a "water fight" of sorts by filling up large syringes (no needles of course!) with water and shooting at each other, but mostly at Sarah.

I left Molly for a little while with our nanny Chelsea in the afternoon and went to Billy's baseball game. Again, Molly was not too happy about it at first but I think she eventually got over me not being there. Then, my sister-in-law Roseanne went to sit with her. I am home now but am heading back to Schneiders in a few minutes to relieve Roseanne and spend the night. I just brought Billy home from his game. They lost by one run but it was a great game and a great season. Billy had some hit into the outfield in the last inning. He was so proud and I am so proud of him too. He never gave up at that "at bat". He fouled off ball after ball until he got a great hit. Another thing Roly would have loved to have witnessed.

With Molly in the hospital all week, it has been a bit "extra hard" on all of us. I am feeling Roly's absence so much. In the past, we could divide and conquer when situations like this arose. I would usually stay with Molly and I never worried about Billy because he was having special "father-son" time with Roly. Now I am leaving him in an empty house with the nanny. He doesn't seem to mind it too much but he does a little bit. He is sad about Father's Day approaching and he told me last week that he didn't want to do anything that day. Then later he said maybe he could make his dad a special picture and send it up to heaven with balloons like we did for Roly's birthday. I said I thought that was a great idea. Perhaps we'll go to my brother's house on Sunday. He is the godfather to both of our kids.

Well, keep your fingers crossed that we get home soon! We could sure use any positive thoughts and prayers you are willing to send our way. Thanks to everyone.

With much love,
Donna

Thursday, June 16, 2005 1:03 PM CDT

Hello everyone,

I am writing to you from the playroom on Med 4 at Schneider Children's Hospital. Molly continues to be hospitalized. She seems to be feeling pretty well and her ears are markedly improved. She is still getting IV antibiotics every 8 hours in the form of "cefapime". We are stuck here because Molly's ANC (absolute neutrophil count) remains quite low...today it was a whopping 89. It needs to be approaching 500 in order to get discharged. I am hopeful that will happen sometime very soon. As strange as this may sound, there is a slight "positive" side to being in the hospital. Molly's roomate is Harrison, one of our good friends from the Morgan Center. Harrison's mom is someone I like very, very much and I guess if you have to be stuck in the hospital, at least we are stuck with people we enjoy being with (though we wish Harrison didn't have a need to be here either).

Today, Roly's sister Vicky and her husband Patrick returned home to Florida with their 3 kids. Joe (Vicky's oldest child) was living with us from September, as he went to college here in NY for the year. We will miss him very, very much. Truth be told, we are very sad to see them all go. Having them here was a great distraction from all of the pain we are experiencing. Billy loves to play with his cousin Bryan and Molly adores Megan and Joe so everyone was happy. Well, we hope it will not be too long before we are all together again. Patrick...thank you for doing so many "odd jobs" around the house this week. It is really so appreciated.

Today, Billy has yet another playoff game. Since his team won on Tuesday, they are playing again tonight. If they win this game, they advance to the "World Series" on Saturday. The team they are playing today can be tough to beat so keep your fingers crossed and say a prayer!

I continue to feel like I am on a roller coaster of sorts. Sometimes I feel "OK" and other times, very down and alone. The goodness of our friends, family members, coworkers and even so many individuals I have "met" through caringbridge helps so much. Thank you all a thousand times over. There is no way a person could get through all we are going through without such support. Thank you for checking on us and for being so thoughtful and sending us so many wonderful messages. Thank you EVERYONE who has sent something in the mail. We are very grateful for everything being done to help us.

With love,
Donna

Tueday, June 14, 2005 12:20 PM CST

UPDATE: Well, we are all home from the conference room dedication that took place in NYC at Kaplan, the company Roly worked for. As I mentioned earlier, the company decided to honor and memorialize Roly by naming a conference room for him. The ceremony was truly beautiful and I am so touched by how much Roly was valued and loved by so many people at work. Many of those individuals Roly held close to his heart were present yesterday afternoon to hear the kind words spoken about him. Those who spoke talked about how no matter what was going on at work, you could always find Roly with a smile on his face and an ability to pull people together to solve the problem of the day. The plaque that was made for the conference room is just beautiful. It reads:

In Memory of

Rolando "Roly" H. Guarton

April 29, 1965-March 29, 2005

A dedicated and humble leader
A devoted father and loving husband
An inspired mentor and selfless friend
who helped build countless success stories
and brightened the lives of everyone around him.

What a beautiful saying for the plaque. It is so true too. I was very honored that I was asked to hang the plaque in the conference room that will now be affectionately referred to as "the Roly room." Not only did his coworkers have the plaque made, they printed what was on the plaque and placed it in a pretty frame along with the picture of Roly and the kids from our Make-A-Wish trip for me to keep. I was so deeply touched by the kindness and thoughtfulness of everyone at Kaplan.

Roly was very blessed to work for such a wonderful company and with such a terrific group of people. He could say truthfully that he not only had coworkers that he got along with each day, but he also had genuine friends at work. If you had asked him, he would have told you that he truly liked his boss and enjoyed the work he did for him and the company. He was happy at his job...he never had a bad word to say about anyone and never complained about the demands placed upon him. He was a hard-worker who took pride in what he did each day. I could tell from speaking with so many people Roly worked with that he is missed dearly at Kaplan. He is missed so dearly here at home too.

I want to thank EVERYONE at Kaplan who helped to honor Roly yesterday. It is comforting to know that Roly's memory will continue to live on at Kaplan. I especially want to thank our friends and family who took time away from their busy lives to be with us on this special day. Many thanks to Roly's Uncle Eddie who has been there always for our family. Roly loved you so much Ed. Also, many thanks to Danielle, Roly's cousin who traveled all the way from NJ by bus with her young son Nicholas. Thank you to Tim and Amy, friends from the beginning and for always. Of course, many thanks Roly's sister and her family for being here from Florida, to my sister-in-law Roseanne and to my mom and dad who are always by my side.

On the "Molly front," I am sorry to say that Molly got a fever last night so at 2 am I went to the ER with her. After spending a long night there, Molly was admitted. Her ANC (infection fighting ability is only 180, which leaves her in a "neutropenic" state and open to more infections. She has a double ear infection and is now on IV antibiotics. I believe she will be in Schneiders' until at least Thursday morning. Wish us luck with an uneventful stay.

Love,
Donna

Monday, June 13, 2005 8:26 AM CDT Hello again,
I am feeling anxious and a bit sad this morning and writing sometimes helps, so bear with me friends. Today, we will be going to NYC to the company Roly worked for. We have been the invited guests at a conference room dedication ceremony that the company is having in Roly's honor and memory. They are naming one of the rooms for Roly and have had a plaque made. The thought of going to Manhattan is a little overwhelming, though I know it is something I am going to have to "get over" eventually. The last time I was there was to go to the morgue and the subway station where Roly was killed. I know that NYC has just too much to see and do there to avoid it for the rest of our lives. Still though, it is hard to go back. Most of the time I traveled to NYC with the kids was with Roly. Billy decided that he did not want to take the train in...I can't blame him so we will drive. Today is not the day to have a "therapy" session with regard to the trains. It will be so strange to go to Roly's office and not have him be there. I can't imagine how odd it will be for the kids. I have been telling Molly that daddy won't be at work. To her, he left for work and never came home. Given her young age, perhaps in her head, he is still there. Billy had gone to work with Roly many times in the past and Molly had visited there too for special occasions. We watched the Macy's Thanksgiving Day parade from the windows of Roly's building. We would always stop in there to use the bathroom or get a drink when we were in the city seeing a show or the like. It will not be easy to see everything going on there in a fairly normal fashion without Roly being there. As irrational as it sounds, part of me feels like, "My world has stopped. How come yours keeps going"? Believe me, I don't want anyone to feel like I do. It is just surreal in some ways how life goes on and so it should yet it has in some regards just stopped for me.

On the "Molly front," I think her headache was from an ear infection. I noticed yesterday that she was holding her ear and tugging at it. When we were at our friend Christine's house yesterday, she also pointed out that Molly was holding her ear. So, at 8 PM last night, once again our good friend Sheila came to the rescue. Sheila is one of my dearest friends and also a pediatrician. She checked Molly and saw the red eardrum. She drove with me to her office and got Molly antibiotics. She saved me a trip to the ER. THANK YOU SHEILA!!!!!

Well, I will let you all know how it goes today. Thank you for your prayers and thoughts today and always.

Love,
Donna

Sunday, June 12, 2005 9:15 AM CDT

Hello everyone,

What a week we have had. The past was has been very difficult for me. It has been filled with joyous occasions...Molly's dance recital, Billy's play-offs, Molly and Billy's "moving up ceremonies" and an incredible sports event held to help our family at the Baldwin Middle School where I have worked for the past number of years. While these things have been truly *wonderful*, they are all so bittersweet because Roly is not here to share them with us. I can't help but think how totally unfair and wrong it is that he is not with us for all of these occasions. These are the types of things that Roly would never have missed for any reason. I keep thinking back to this time last year. Molly was just entering the "long-term maintenance" phase of her chemotherapy protocol. Even though it still involved chemo every day for almost two more years, Roly and I were beginning to breathe a sigh of relief. We had gotten through what we thought was the "worst" part and believed that brighter days were ahead. And they were though not for long enough. I have shed many tears this week. I am just heart broken over the loss of my husband. I am so sad for me but even sadder for the kids. We all just miss Roly so much. However, I am so, so grateful that Roly's sister and her family have been here with us for all of these recent events. Their presence is a true comfort and means more to me than they probably know and realize.

Molly's moving up ceremony was just adorable. The kids sang a bunch of songs like "The Wheels on the Bus" and "The Itsy Bitsy Spider." They were dressed in white caps and gowns and all received "certificates" and for those moving on to kindergarten, "diplomas." They had pictures taken by a professional photographer...Jennifer Mercurio from Lasting Impressions in East Rockaway, NY (she is awesome) and they enjoyed a visit from a clown who was quite skilled at balloon animals. There was lots of food, fun and even gifts for the kids. Last year, Roly and I laughed so much through the ceremony. Molly refused to wear the "graduation" cap and instead insisted on wearing this white Easter hat with a big pink flower on the rim. She was so swollen from steroids and had almost no hair at all. This year, she looked so beautiful and so much healthier. How Roly would have loved to have seen her yesterday. Her hair has grown in and her face is no longer plump and round. You would not think she was ill to look at her now though the emergency run I had to take to the hospital on Friday reminds me of the fact that she is still a sick little girl. Apparently, Molly irritated the roof of her mouth by playing with a necklace. The area that was irritated swelled up and looked like an abscess. Her onc saw her and told us to begin with two different mouth care products and to watch for fevers, etc. The swelling was likely owing to the fact that Molly's immune system is so compromised. Even a little nic on the roof of her mouth can send us running to the hospital for treatment. But I digress, back to the moving up ceremony...it was so wonderful though we all missed Roly a great deal.

Friday was Billy's moving up ceremony. Again, it was so touching and sweet. His class sang some beautiful songs and entertained us. We had a chance to say good-bye to some of Billy's classmates and that was very, very difficult for Billy. A few kids are moving away and Billy really likes these children. He was actually crying quite a bit about it this evening. Any type of loss triggers some strong feelings in Billy. He was amazing though in his own ability to relate how the sadness he felt about his friends going away is like the sadness he feels about the fact that his dad is gone and will not be coming back. I supported him the best that I could and gave him a shoulder to cry on. Hopefully the days to come will be a little less sad for him.

After Billy's ceremony, the Baldwin Middle School (BMS) did an incredible thing for our family. The National Junior Honor Society sponsored a "Faculty Challenge" in which teachers battled teachers in a variety of athletic and fun events. The funds that they raised are being donated to our family. We are so, so grateful to everyone who participated or watched. We are really overwhelmed by the outpouring of love and support that has been given to us. It was so great to be back at the BMS to see my friends and coworkers. It was just so much fun to watch them compete in events like the "Tug of War" and a water balloon toss.

Yesterday, Billy had another play-off game. His team won and they now advance to another game on Tuesday. Billy had 2 solid base hits and he was so proud. He has been struggling at the plate lately so I'm glad that he was able to break through and help his team out.

The "cleaning out" and "sorting through" continues at our home. Yesterday, I went through a huge box of old video tapes. Most of them were for the garbage, as they had old episodes of Seinfeld or Friends on them. Prior to TIVO, we always set the VCR to tape our favorite shows. But were those tapes labeled? No, neither Roly nor I were very good at that kind of organizing. So, before I tossed the tapes, I checked them one by one and sure enough, on occasion, I would discover one that was of the kids when they were younger or even of Vicky's kids. I came across one tape that was an absolute riot. Almost 40 years ago, Roly's family bought a super 8 movie camera. They filmed many things, from family vacations to holidays to parties that took place in their small apartment in Brooklyn, NY. Many years ago (about 17 or so), Roly found some of the films from the camera. I remember that a lot of his family members were at his mom's house that day and we gathered into the upstairs den to watch the films. The sound however was broken on the projector. The decision was made to watch the movies and to tape what we were watching with a camcorder that was placed on a tripod. The funny thing was that for some reason, we chose Elvis music to play in the background. Also, everyone was talking about what they were watching..."ooh look at this one...wow what was she thinking when she picked that dress to wear" and the like. All of those comments got recorded on the video tape. It was hysterical to not only watch the movies but to hear the many hilarious comments made. Roly can be heard laughing hysterically and making wise cracks through the whole thing. It made me feel like he was right next to me, as I remember that night like it was yesterday. It also made me miss him even more but I am so grateful to have that tape and many, many others. Roly's mom is the official videographer of the family and though there may have been complaints in the past of, "Oh no, not the camera again," I thank you Nora from the bottom of my heart for all of the taping you did. Those films are precious and will give the kids a real, good look at the amazing, wonderful, loving man their dad was.

Today, we have plans to go to a carnival for kids with cancer and their families. However, Molly woke up with a splitting headache and unless she feels better, we will be staying home. It is very unusual for her, as she never complains of a headache. Here's the thing when you are the mom of a kid with cancer. You worry. And worry. And worry some more. About everything. Even a headache is cause for concern. You don't want to let your mind travel to scary thoughts but you can't help it. You worry that it could be a sign of CNS relapse. Or something worse if that is possible. And here is where I miss Roly so very much...I would normally turn to him and voice all of my (??irrational??) fears and he would reassure me that it was nothing serious. Even if he thought it was serious, he would not let on to me. So now, I sit by myself with those fears and anxieties. Although others can be supportive and reassuring, there is something unique about worrying about one's own child and it is lonely without Roly by my side. Please say a prayer that this is nothing but a sinus headache or something of the like.

I hope you all enjoy what is left of your weekend. I will update again as soon as I get a chance. Many thanks again to EVERYONE who continues to help us so much and who love us so dearly. Don't be shy about signing the guestbook, we love to hear from you all.

With much love,
Donna

Tuesday, June 7, 2005 9:40 PM CDT

Hello everyone,

I actually updated Molly's page yesterday but for some reason, the update didn't load properly so we'll try again.

We had a really good weekend, though it was quite busy! On Saturday and Sunday, Billy had play-off games for little league. His team lost one and won one. As a result, his team played again this evening and they won another game. They have to win 3 more play-off games to make it to the finals. If they lose one more, they will be out of contention. Billy's team has been together for the past 4 years when the kids first started to play T-ball. They have had the same coach and he is just a great guy. The parents are wonderful and it is a really nice group of kids that Billy plays with. We are all hoping that they go out there and do their best while having lots of fun. The next game will be on Saturday. Keep your fingers crossed that they walk away with another win!

In addition to baseball, we have all been really enjoying a visit from Roly's sister Vicky and her family. The Naughtons have been doing their best to help me out with some big jobs at home like cleaning out the crawl space. I have to say that my husband certainly wins the award for being able to fit the most stuff into a confined space. Roly never liked to throw things out. He used to say, "Don't get rid of that...you might be able to use it one day." So we have lots and lots of Rubbermaid buckets of things we *might* be able to use one day. Most of it will be given or thrown away, as I am on a mission to try to "declutter" as much as possible. Also in the crawl space were buckets filled with old cards, pictures, yearbooks, mementos and the like. Going through that stuff is both comforting and so painful at the same time. There are pictures down there of Roly when he was a little boy. Sometimes I'm amazed at how much Billy resembles his dad. I feel rather drained from the whole process and whenever I undertake the task of cleaning something out and reorganizing, it always seems to get a bit worse before it gets better. Right now, we are in the "bit worse" phase. It's all so draining.

On Sunday, Molly had her dance recital. As you can tell from the picture at the top of the page, she looked adorable. She did a lot of smiling on stage but not too much dancing. It didn't matter though. The whole show was just terrific. It was so great to see her up there doing something so "normal." It was worlds away from childhood cancer and that was great. I think Molly will continue taking dance over the summer. She really enjoys it all so much.

In the afternoon on Sunday, I took Billy and Bryan (my nephew) to a carnival that comes by our house each year. It is called the Strawberry Festival. Neither Billy nor Bryan ate any strawberries but they certainly went on a bunch of crazy rides. You know you are getting old when you look at those rides you used to crave and now say, "no way!" They had lots of fun while I got nauseous just watching them spin and whirl.

In the evening, Billy and I went to a Japanese restaurant with our friends, the Rosenbergs and the Fredericks. It was a hibachi restaurant where the chef cooks right at your table. The kids loved watching the show the chef put on. Molly was just too tired to go so she stayed home with her cousins. We had a great time. I've said it before but I will say it again, we are so lucky to have such great friends.

Monday was filled with more cleaning of the crawl space and school for Molly. I had to do some things with regard to Roly's estate and that was frustrating and tiring. In the evening, the kids and I attended the last meeting of our bereavement group until it resumes in September. A memorial service was held for all of those who died and afterwards, there was a "pot luck" dinner. Each family was asked to bring the favorite food of their loved one. Billy and Molly chose to bring pineapple soda, pineapple cake and rainbow cookies. These were some of Roly's favorite treats. The evening was very nice but again, rather draining emotionally. Billy and Molly really seem to love going to the Center for Hope and that is something that makes me feel good. We got some phone numbers of the kids that Billy and Molly seem to like and I hope that we can have a play date with some of them over the summer. Right now though, even the thought of play dates is a bit overwhelming. Everything still feels so upside down and just "not right." It is still hard to get through each day.

As for the update on Molly's medical happenings, she is feeling OK, but not great. She continues to cough from a post nasal drip though she hasn't had any nosebleeds in the past few days. Not to be too gross but she has boil on her bottom and this could be a big problem if it doesn't go away before her counts bottom out. If her ANC goes too low and she is unable to fight the infection, it could cause a very serious situation. Right now, her counts are fine (ANC is about 2,000). The doctor put her on Keflex 4 times a day for the next 10 days. Hopefully, that along with soaking her bottom and using topical bactriban will do the trick to get rid of it. Molly is feeling rather tired and cranky these days. Her hemoglobin is down to 9.1 and she seems to be heading towards a transfusion in the not so distant future.

The rest of the week is also busy. On Thursday, Molly has her moving up ceremony at the Morgan Center. On Friday, Billy has his moving up ceremony at his school. Just like the dance recital, it will be hard to be at these events without having Roly by my side for not only me but the kids too. Billy has been talking more over the past few days about how much he misses his dad. I am glad that he is talking about his feelings but he is just breaking my heart. He is still struggling to understand it all. So am I. The end of the school year is another type of loss for Billy. Three or four of his classmates will not be returning in the fall and that is very upsetting to Billy. Any type of loss just triggers so many intense feelings for us all.

Well, I guess that is the news for now. As always, I thank you all from the bottom of my heart for your support, love and encouragement. You are all helping us to get through what is the most profound pain any of us has experienced to date.

With love,
Donna

Friday, June 3, 2005 10:44 PM CDT

Hello everyone,

Well, today was a day that was rather like a roller coaster with some very high moments along with some very low ones. Today, Billy had his school trip to Jones Beach. It is something all of the kids and the parents look forward to. Unfortunately, the weather wasn't the greatest for the beach. It was kind of drizzly and overcast and a bit cold by the ocean. Still, the kids had a good time. Billy was having a great time until he got into an altercation with an older boy from his school. Apparently, Billy thought the boy was teasing him and according to Billy, he has been teased a good amount by some of the older kids in the recent past (though not necessarily the boy he had a problem with today). In a blink of an eye, it got physical. Billy had this boy who was much bigger than himself down on the sand and they were "going at it." I was nearby and broke it up. While I understand that Billy has "had it" and it doesn't take much to cause him to be very upset these days, I was disappointed in his behavior. He was actually disappointed in himself after the fact. He cried a lot and was apologetic. Then he got very hard on himself. He is harder on himself than most anyone else could be. It broke my heart to see him so upset. Through his tears, he said to me that I needed "to help" him because he hates feeling like he does. I reassured him that I would help him and that no matter what, I love him and always will. After discussing it with me, Billy decided that he would speak to the director of his school and tell her what happened himself rather than wait for her to hear it from someone else. It was a brave thing to do. The director was kind and compassionate but did speak to him about his actions and told him that he needs to try harder to stay in control in the future. Then Billy decided to apologize to the parents of the boy he fought with. I know them and they are very nice and were so kind to Billy. They said they understood. They praised him for taking responsibility for his actions, even though it was a hard thing to do. They even told Billy that they know that their son has made similar mistakes and that he shouldn't worry about it any longer. (I think they even spoke to their son about making sure that he does not tease Billy.) So, what was not such a great situation, turned out OK.

As for Molly, she went to the Morgan Center this morning with our nanny, Chelsea. This is the first time that she went alone with her. It seems to have gone fine and that is a relief for me.

After school was over, Billy attended the birthday party of one of his buddies from his baseball team. He had a GREAT time and was so happy to have gone. After that, my parents came with me, Billy and Molly to a fundraiser for the Center for Hope, the bereavement center we are attending. The center is affiliated with Schneider Children's Hospital and there is not enough good that I could say about it. The woman who runs it, Susan Thomas, is absolutely fabulous. She was recently on an episode of "Extreme Makeover Home Edition," as a family who attended the center got a makeover. The family told NBC about the Center for Hope and the center was given a donation to help support the programs it offers. Both Molly and Billy are in groups with children their same age who have endured a significant loss. Billy and Molly really enjoy going to the center. I find it very helpful as well and have met some nice people there. Tonight was the center's "Family Fun Night." There was BINGO, raffles and a magic show by one of the nicest and funniest magicians around, Magic Al. He has been on David Letterman and has done parties for lots of celebrities kids. Billy and Molly got chosen to assist Magic Al and they both had an absolute ball. Even more fun for Billy was the fact that we won quite a few raffles and a round of BINGO. Each time we had a winning raffle ticket, Billy's face lit up as if it was the BEST thing ever! But perhaps the best of all is the fact that Billy won the grand prize, the hottest new handheld Playstation game. It is called the Sony Playstation PSP. Billy was absolutely beside himself with happiness. In fact, he was so happy that he won this prize that everyone else was equally happy for him. Some people even cried they were so happy for him! He told me that he thought Roly had something to do with our great luck tonight. Maybe he did. Even more than the fabulous time the kids had tonight are the valuable lessons that Billy learned. He learned that even when something goes wrong in your day, it doesn't mean that your day has to stay that way. You can change your thinking and stay positive and sometimes, good things...even great things can come your way. You can't dwell on what went wrong, you can only work on having a better outcome in the future. If you stay locked up with the bad, then you don't even have a chance to seek out the good.

Well, on a different note, Roly's sister and her family arrived safely in New York, despite having to drive through rain almost the entire trip up from Florida. Tomorrow, Billy has his first play-off game. Wish him luck! Then, it's off to another birthday party. Molly hopes to go to Billy's game. Her nose is bleeding again, on and off. Please pray that it just stops already.

Thank you all for checking in on us. Leave us a note if you stop by. We so enjoy reading your guestbook entries. Hope you all have a great weekend.

Love,
Donna

Friday, June 3, 2005 10:44 PM CDT

Thursday, June 2, 2005 6:40 AM CDT

Update: I am happy to say that at the moment, Molly's nose is not bleeding and she has been "OK" with regard to that for the past 24 hours. We were able to get the needle taken out of her port at our pediatrician's office yesterday. One of the nurse practitioners there used to be a hemotology/oncology nurse at our hospital so she was able to take out the needle and save us a trip to the hospital. Molly is still coughing a little bit and I am walking around with quite the congested chest. Lucky for me, my internist is also a close friend and I paid HIM a house call last night. He gave me some antibiotics so hopefully, we are all on our way to feeling better very soon.

Tonight is Molly's dress rehearsal for her dance receital. I am hoping to get a couple of pictures of her in her costume...it is adorable. Very frilly and girly. She is doing a tap number to "Baby Take a Bow". I can't wait to see it.

Billy's baseball team has done so well that now they are in play-offs over the weekend. He has a 9AM game on Saturday and another on Sunday. Let's hope it doesn't conflict with the receital!

Roly's sister Vicky and her family are now driving from Florida to our home in NY for a visit and to give me a hand with a few things at home. Vicky's son Joe had been staying with us this year, as he attended college in NY but he is returning home with his family in a couple of weeks. That will be sad for the kids...yet another loss to endure.

OK, I guess that's what is going on. Please say a prayer that Vicky and her family arrive safely and that everyone here feels better very soon.

Love,
Donna

Wednesday, June 1, 2005 8:40 AM CDT Hello again,

So, yesterday turned out to be a rather difficult day for us all. What is it about Tuesdays??? Molly went to the clinic where she saw her oncologist. Her ANC was down...only 660 this week. Though technically her chemo could have been held, her doctor said that on previous similar protocols, the cut off was always 500 so he reduced her chemo a little but she still got it. While we were at the clinic, Molly got a terrible nosebleed. She hasn't had one that bad in quite some time. After bleeding all over the place, it stopped only to start again. This went on for a while. It would slow down or stop and then gush again. Interestingly, it was from both nostrils, not just the left which is usually the culprit. So, we ended up staying for about 7 hours at the clinic. Molly got medication to help the bleeding stop and she also received a transfusion of FFP (fresh frozen plasma). When we finally ready to go home at 7:00 PM, Molly started to bleed yet again! At that point, the clinic called the inpatient floor and we were scheduled to get admitted. That was something I was not prepared for and Molly was NOT happy about. I actually teared up, which was rather embarrassing. Billy was at home with my parents having a fit that we weren't home. The doctor at the clinic called ENT for a consult and lucky for us, the ENT doctor made it to us before the clinic closed. By the time he got there, the bleeding stopped again and he examined Molly. There was really not much more that could have been done for her short of packing her nose should it have bled uncontrollably again. However, with an ANC of 660, packing is not the best option. So, they canceled our inpatient bed and sent us home with Molly still accessed in case we ended up at the ER last night. When we got home, she did bleed again but we got it stopped. She slept all night with a cool mist humidifier and hopefully, that will help. I think that the over the counter cold medication I gave her (with the fellow's permission of course) dried her out and contributed to the bleeding. Hopefully, it will ease up now.

I was drained by the time I got home. Billy was in a fairly foul mood. He was angry because I had his baseball gear in my car and because I was stuck at the hospital, he didn't have it for practice. Though my mom reassured him that someone would share their stuff with him, he pitched quite a fit. I spoke to him when I got home and he admitted that he is just so angry about his dad being gone. Last night, he spoke of being so angry at God. I tried my best to have him understand that God did not do this to his dad. That accidents happen and that I believe that even God is sad that daddy is not with us. However, I told him that God knows things that we don't know and that we cannot understand. I explained that sometimes I have to hold Molly down so that the doctors can do something painful that needs to be done to help her get better. Molly doesn't understand that. All that she knows is that she hurts and that the person she loves and is supposed to love her so much is "helping" her to be hurt by holding her down. Even if I tried to explain it to Molly, she just could not understand it. I told Billy that I believe it is like that with God. That even if he explained Roly's death to us, we would not understand it. There is no way that in this world, the loss of Roly could ever make sense to any of us. But perhaps He knows something we don't know. All we can do is trust that there is a loving God who will help us to get through this, who hurts with us and for us and who will reunite us with Roly in the Kingdom of Heaven for all eternity. So much for a little boy to process and understand.

I have to say that given all that I just wrote and do believe, life is still SO HARD without Roly. The emptiness I feel without him by my side is almost shocking to me. I am a big fan of Joni Mitchell and I keep hearing the lyrics of one of her songs run through my head...."Don't it always seem to go, that you don't know what you've got 'till it's gone"... Of course, I knew how lucky I was to have Roly as my life's partner. That I loved Roly deeply and I appreciated his many, many gifts. I even told him that on a regular basis. I regarded him as my soul mate and truly, my "better half." I just didn't realize how much I depended upon him, not to do "things" but just to be "there." Just to look at, to talk with, to joke with, to share with, to hold hands with, to worry with, to do nothing with, and the list could go on. It is the *with* that I miss. I am so lonely without him. Sure, I have great friends and an incredible support system. As I have said before, I am luckier than many in this circumstance. And still, that support is but a drop in the bucket compared to void I feel without him in my life. I am so tired of being sad and yet, that is what I feel so much of the time. Sad and lonely and overwhelmed. But I have faith that it will get better in time and until it does, please keep praying for us all.

With much love,
Donna

Monday, May 30, 2005 10:01 PM CDT

Hello everyone,

Before I "fill you in" on how the weekend went and the latest news, I feel compelled to tell you all again how much I appreciate your kindness, compassion, support, friendship and encouragement. All of you...from those we have known "forever" to those we know only via "cyber space" are such a source of comfort to me that "thank you" doesn't suffice. I want you all to know that you make the unbearable, bearable and for that, I will be forever grateful.

So, on to the "news." To begin with, Molly is not feeling very well. She seems to have come down with a nasty cold and has been coughing like crazy. Last night, we narrowly avoided an ER run. She had a temp of almost 100. Another half a degree and off we would have been. I prayed like crazy and was up most of the night. I did NOT want to go off to the hospital. Lucky for us, her temperature went down and we made it through the evening. I spoke to the fellow on-call and he allowed me to give Molly some over the counter cold medication. It seems to have helped a tiny bit. I will be bringing her to the clinic tomorrow to see what is going on.

As for the weekend, Saturday turned out to be a really nice day. Billy had his little league game and he did well. My brother and sister-in-law from Florida came to the game along with my parents. Billy (and Molly) were so happy to see my brother. Later, the kids and I went to see the movie, "Madagascar." We met our good friends, the Rosenbergs there. Our friend Joe was actually our "wish granter" from "Make-A-Wish." Joe and Christine have two beautiful girls (twins) and one had leukemia about two years ago. She is doing GREAT now and every time I am with her, I am reminded that many kids do well and go on to live full, happy lives. How I hope and pray that is the case for Molly and every other child out there battling cancer. The movie was cute, though there was one scene that threw me for a loop. The premise of the movie is that some animals from the Central Park Zoo break out to go back to the wild. As they are loose in NYC, they make their way to the subway station at 59th street. They almost get hit by the trains. That is the same station Roly was killed at and though the scene went over Molly's head, it didn't go over Billy's. I had no idea this was in the movie, so even I was rather shocked when I saw it. Billy and I spoke about it before he went to bed that evening and he seemed "OK." In fact, he said that he still liked the movie and thought it was funny. I wonder if that is the truth or something he is telling himself. Then, Billy also asked me if I thought Roly wanted to die now. Wow...that also threw me. I think Billy may have overheard some earlier conversation about the police investigation, etc. I reassured him that I did NOT believe that Roly wanted to die now for one minute and told him that his dad loved him so much that he would never choose to leave him. Billy said maybe Roly missed his family in heaven and wanted to see them. I told him that no matter how much he missed his family in heaven, he would never choose to leave us here. I explained again that Roly's death was an accident and told him the police even concluded that after their investigation. I explained to him that it is so hard to understand how and why this happened, even for the grown-ups but that we have to rely on the fact that his dad loved us more than anything and that as sad as it is, accidents happen and his dad was a victim of one. Billy seemed to appreciate the conversation and I hope I relieved some of his worry and concern.

Anyway...back to Saturday, after the movies, our friends Joe and Christine treated us to a great Italian dinner at a local restaurant. We had such a nice time. THANK YOU to the Rosenbergs for such a great evening.

On Sunday, I decided not to go to our friends' barbecue. It is usually fairly crowded and I knew that there would be just too many people there to recount the story of Roly's death to, etc. Listening to the band play without Roly would have been difficult too. I did hear though that the band practiced one of Roly's favorite songs to play, "Franklin's Tower" (by the Grateful Dead) all week long. They played it in tribute to him and I am very touched by that. I heard that his friend Rory spoke about Roly and that it was very moving and kind. I hope that someone video taped it. So, instead of going to that barbecue, my family came my house and we barbecued here.

Today, I went to Westchester to Tim and Karine's with Billy. Since Molly wasn't feeling great, my mom came to stay with her. Billy and I lucked out in that there was no traffic either way. On the way up, a strange thing happened. As I pulled off the exit of the parkway, in my rear view mirror I saw one of my friends from Billy's school who moved to Westchester a number of months ago. She saw me and we pulled off the road and spoke for a few minutes. How weird that we met up at that exact moment! She actually lives in the opposite direction of my friends but she was heading my way on an errand. Anyway, it was nice to see her. Billy had a great time playing with the kids and I had a really nice time just being among our joint friends. Tim was like a brother to Roly. Another friend there, Amy (who was there with her husband Neil) also meant the world to Roly, as did his friend Steve (who was there with his wife Cindy). Being with them was comforting. They knew Roly about as well as anyone. When I'm with them, I don't have to describe Roly or tell them stories...they just know all of that stuff first hand. Our shared love of my husband is something that I believe will keep us close and bonded forever. Many thanks to the Krawetz family for hosting this barbecue and for such a nice afternoon.

I also want to thank our dear friends, the Ducis. Gerry "persuaded" his son Gabe to help him with a project for our family. From 2002-2004, Roly and I owned a digital camera called the Sony Mauvica. It recorded photos on little picture CDs that loaded right into the body of the camera. It seems that the technology never really took off and so we switched to a different type of digital camera when the drive in the Sony broke and it was too expensive to fix. Anyway, I have TONS of picture CDs. My computer would not read them though. Neither would anyone else's. Gerry found a recovery program and was able to get those pictures off of the little discs and on to one big data DVD for me. I believe there are about 3,000 photos that he recovered! This project took MANY hours and I am so grateful to Gabe and Gerry. Pictures have always been precious to me but now, they are among my most valued material possessions. THANK YOU DUCIs!!!! This means the world to me.

Well, I guess that's the news for now. Talk to you all soon.

Love,
Donna

Saturday, May 28, 2005 9:31 AM CDT

Hello to everyone,

Sorry that the last entry was so sad. It is what I was feeling and sometimes it is just so hard to carry on. I am somewhat "better" now. I am sure that all of those good thoughts and prayers are making a difference. Thank you all for holding us close in your hearts.

So, it is Memorial Day weekend once again. This is the weekend that we planted our annuals and that we looked forward to all winter. To us, it is the start of summer, our favorite season. I would always go and buy at least 3 flats of impatiens. Really, too many plants for our front yard but Roly always had a way of placing them so that they looked just perfect. As they grew over the summer, they flourished and looked so beautiful. Though I could do it myself, I am grateful and relieved that my dad has taken over the gardening. He is doing it quite differently from how Roly did it. He has put a lot of different plants in. My dad is quite the gardener. His house always looks great. So even though part of me wants it to be exactly the same as it always was, part of me is saying that it is good to do it differently. After all, things ARE different and perhaps the garden will be an outward reminder that even though it is not the same, beauty is still present and life will go on to be enjoyed, just not in the same way that it used to.

At the last minute, I was given two tickets to last night's Yankee/Red Sox game. If you are a Yankee fan, you know that those tickets are a hot commodity. I asked Billy if he wanted to go and he did. I thought my nephew Joe (who is a big Yankee fan) would take him. Instead, Billy asked me to take him. Though I was touched, truth be told, I was a little nervous about driving to the South Bronx, parking, getting us through the stadium and to the upper deck seats we had. But I didn't want to disappoint Billy and I said sure, we would go together. It also gave us a chance to spend some "quality" time with one another. Well, we did it and we had a really nice time. Though we were in a rowdy section with a lot of Boston fans, we enjoyed the game and had a lot of laughs. Billy was really affectionate and even offered the spontaneous, "I love you mom." Well, that makes it all worth it.

This weekend, we have a few things planned. My brother George and his wife are in from Florida and the kids are excited about that. Billy has a baseball game of his own this morning. Tomorrow, we are invited to a neighbor's barbecue though I don't know if we will go. Every year we go there and they have live music. Roly always joined the band for a few songs and I think it might be too hard to be there. I guess I will see how we feel. On Monday, we will go to Westchester for a barbecue with Roly's best friend's family. Tim and Karine are as much my friends as Roly's and my kids love their kids. Still, it will be strange to be there without him. I guess another "first" will have to be tackled.

Well, I guess that is the news for now. I hope you all have a great weekend. Truly, I thank you all for praying for us, caring and reaching out to us by leaving us messages in our guestbook or e-mailing. We so appreciate it.

With love,
Donna

Thursday, May 26, 2005 7:13 AM CDT

Hello,

This might sound a bit odd but I think it is just really beginning to hit me that Roly is dead. In fact, as I typed that last sentence, part of me wanted to write, "Roly is gone." But the harsh, so very painful truth is that he is dead, not just gone. I know that I will see him again one day, I believe that but that day seems too far off. Until then, I just don't know how I will continue to live without him. Absolutely everything seems impacted by his absence.

Last night, I was very grateful to be honored by one of my former students from the Baldwin schools. Each year, Baldwin selects 10 graduating seniors who represent "excellence" for a variety of reasons. Those students are then asked to select one teacher from elementary school, one from middle school and one from high school who have impacted upon them the most. One of the kids chose to honor me as the middle school "teacher" that impacted on her the most. It was so wonderful to be chosen, especially because psychologists (which is what I am at the middle school) are often not thought of for these types of things. I got to see some colleagues whom I miss and it was great to see the young lady who selected me. Still, through the whole night, I fought off tears and put a smile on my face. What should have been just a wonderful evening was filled with condolences from many and an ache and sadness for me, that Roly was not at home waiting to share my recounted tale of the evening.

When I got home, I was greeted by my mom, who has been so wonderful. I am very lucky to have her and my dad's constant support and help. But all I wanted to see was Roly's face. The kids were up watching the finale of American Idol. Though we love Carrie, our house was rooting for Bo. You win some, you lose some I guess. Anyway, after getting the kids to bed, I sat to watch the program (I had TIVO'd) it. Usually, the finale show is great, one that Roly and I loved to watch together. Roly especially loved to watch the auditions. Sometimes, he would literally cry from laughing so hard at some of the contestants who let's say....needed to improve their vocal acuity. As I watched the recap of the worst auditions, I just sobbed instead of laughed. It is really hitting me that this is it...my other "half" is *never* going to be with me again on this earth. I cried so much last night...maybe more than when I first found out. I guess between the shock of the news, the devastating way that Roly died, and Molly's medical crisis at the time, I didn't have a chance to really let it sink in and process it. Sometimes I just want to scream! I never thought I could miss someone so much. I didn't realize how much I took for granted. How much little things meant. Like having his warm body to curl next to on a cold, rainy evening like last night. Or having my back scratched. Or just having him home each night to share my day and to share our lives.

Roly, I miss you more than words can tell. I would do anything to have you back, even for a few minutes. Each night, I pray that I will dream of you and that somehow, you will explain all of this to me because I just don't understand. The kids miss you so much too. Molly dreamt last night that she saw you in the pool so she jumped in with all of her clothes on. You scooped her up and played with her and she was happy. Billy also dreamt not long ago that you came down from heaven to look for a ball. You spent some time with him and then you went back to your heavenly home. Know that we love you so much and miss your presence each moment of each day. Keep watch over us.

With love,
Donna

Wednesday, May 25, 2005 8:14 AM CDT

Hello everyone,

I want to share a little quote that I recently came across when I was cleaning off my dresser. I had saved it from a memorial service I attended for a child a while back:

God didn't promise days
without pain
Laughter without sorrow
Sun without rain,
But He did promise strength
for the day,
Comfort for the tears,
And light for the way.

This is what I have been trying to focus on the past few days. It has been difficult here, as one would expect. As time continues to go by, we just all miss Roly more and more. Billy has been giving me a "run for my money" so to speak. He has been expressing more anger, which I totally understand and of course, I am the target of a lot of it. He seems to be holding it together in school but by the time he gets home, he just can't hold it together any longer. We are working to find a way to help him express himself without being hurtful to others. I think it might be time for those drum lessons. Perhaps if he has a place to physically put his feelings, he will lash out at others less.

Molly is doing OK overall. Her counts were high again, with her ANC being a little over 4,000. Part of that is owing to the fact that she just completed a course of steroids, which tend to raise the WBC. Anyway, she grew a little and gained some weight so her chemo was increased again just a bit. We'll see how she does next week. Molly has school this morning so I'm off to get ready to take her. I will update more later.

Thanks as always for checking in with us.

Love,
Donna

Sunday, May 22, 2005 10:42 PM CDT

Hello everyone,

OK, another weekend has come and gone. Those of you who "know" me, know that *time* and I are always at odds. Sometimes it goes too slowly, others times too quickly. Mostly now, I just want to push the hands of the clock backwards to ANY time prior to the morning of March 29th. While I know it's not possible, I wish with all of my heart that it was. People say that things get easier in time and I guess in some respects, that is true. We are getting a little more accustomed to doing things differently and in that way, life is a little easier. However, the ache over the loss of Roly and the missing him is not any easier. In fact, in many regards it is more difficult. The more time passes, the longer it has been since I have seen him, the more I long for him. My brain still cannot fully process the fact that he is gone. For example, I ran into the supermarket the other night to pick up a few things and this is how it went. Edy's ice cream was on sale (Roly and I both love Edy's). So, which flavor to pick? For me, I love mint chip but Roly is not crazy about that. He likes more gooey, fruity flavors. So, instinctively I began to search for something that we would both be happy with. And then, like a ton of bricks on my head, it dawned on me that Roly would be there when I got home to protest over mint chip. I actually started to cry in the frozen food aisle. When the tears start, I truly cannot stop them from coming. Things like that happen all of the time and it is like I'm learning that he's gone for the first time over and over again. I just *hate* that. So, I ended up buying orange sherbet mixed with vanilla ice cream. Roly loved that. Mint chip will be there for another day.

The weekend overall was OK. Billy, Joe (my nephew) and I went with our friends to the Mets/Yankees game on Friday night. Many thanks to the Mattones who got us the tickets. The whole evening was a lot of fun. We had bleacher seats out by center field but the view was great and it was only cold when the wind blew. We stayed until the end of the game and the Yanks won. Everyone was happy about that. And of course throughout the whole thing, I couldn't help but think how much Roly would have liked to have been there with us. (Molly stayed home with my mom and watched the Muppet version of the Wizard of OZ, which incidentally, my mom said was a little odd.)

On Saturday, Billy had a little league game. He did great! He got 2 base hits and 2 RBI's and the coach awarded him the game ball for his good performance, good effort and team spirit! Billy was so happy and proud. And again...the thoughts were there for not only me this time but Billy too...daddy would have liked to have seen this. Yes, he would have Billy.

Later on Saturday, we stayed home and Billy did some school work. We went for a walk on our block and Molly rode her new princess bike for the first time. She did terrific. Another first that Roly was not here for.

Today, I took the kids to the movies to see "Kicking and Screaming." Both my kids love Will Ferrall, especially since they saw the movie, "Elf." They really enjoyed this movie too. Afterwards, we went to my brother Van's for dinner and then home to watch the finale of "Extreme Makeover Home Edition." I think that might be Billy's all time favorite show.

So that was the weekend in a nutshell. Basically, we are going about the business of the day but always, in some shape or form, for me at least, it is so obvious that Roly is missing. I am just so sad about that. Everyone is coping the best that they can but it is so difficult for us all. I want to ask that you please continue to keep us in your thoughts and prayers. We really need that and so appreciate it. You are all such a wonderful source of support and I thank you from the bottom of my heart.

With love,
Donna

Friday, May 20, 2005 6:30 AM CDT

Hello everyone,

First off, let me tell you that we are fine. I didn't get a chance to update until now and a few of my friends have E-mailed me to ask if everything is OK. Thank you all for caring so much. That means a lot to me. Everything here is fine...at least as OK as it will be for now. It is a very strange thing to be a (relatively) young widow and the parent of young children. One thing I know for sure is that I am tired. Even with help (and truly, I have a lot of help and I am luckier than most in that area), there are certain things that only a parent expends energy on and shares with their partner. I am feeling lonely for Roly and a little sorry for myself that I cannot share with him the way I used to. Nighttime is difficult for many reasons. Aside from the quiet and the fact that it is "in my face" that Roly is not here, I am the only one to get up in the middle of the night for that drink of water, or bad dream or coughing fit or whatever. I know that for a lot of my friends, that is the way it is even with their spouse by their side. That was not the case for Roly and me. We shared that. If one person was extra tired, the other pitched in. There was the occasional chance to "sleep in" on the weekend. No more. It is not a big deal really, it is just tiring.

On top of it, grieving is exhausting in and of itself. Some days, like yesterday, I just seem to cry all day at everything. Why was yesterday different from any other day? It wasn't really. It just hits in waves. Billy started his day by sitting on the living room couch, just quietly staring off. When I asked what he was doing, he said, "I'm pretending that daddy is sitting next to me." Well, that broke my heart. Molly all day for some reason played the "remember when daddy did...." game. For her, it was comforting to remember so many things her dad did with her and for me, it was gut wrenching to think that she will not have him in her future to do them again and develop new memories. This all just stinks so bad....and that is the understatement of the century. Crying is exhausting too.

Now here is a bit of news that I just received. As many of you know, Roly died after being struck by a subway train. I knew in my heart and soul that Roly did not take his own life and that his death was accidental. The police however were investigating the possibility that his death was intentional. Well, more than 7 weeks later, the medical examiner and the police have concluded that Roly's death was in fact an accident. The police searched and searched and spoke to many people. They found no evidence that Roly was planning to end his life. All they found is that he had everything to live for and was adored by all who knew him. That he was an even, mild, sweet man who loved his family greatly and deeply. He was the best friend and a highly valued employee. As I said, *I* knew it but for the sake of everyone else who was wondering or who didn't know Roly, now there is an "official" word from both law enforcement and the medical examiner.

On the medical front, Molly is into her steroid cycle and let's say that she is....demanding and a bit on the moody side. She wants what she wants when she wants it and nothing else will do. Most of what she wants is me and only me. I really think that she is suffering from allergies too, as she has a little drip and is coughing at night. She doesn't seem sick though. The vincristine is definitely impacting her. Not to be too graphic, but she hasn't gone to the bathroom since Tuesday and her belly is really starting to hurt. That is with double doses of miralax too. Let's hope today is a "success" for her. She is also back to having nosebleeds almost every day, though they are not nearly as severe as the ones she had been having. Most seem to stop after a few minutes. Billy on the other hand seems a drop better with his allergies. He is now on so much medication but at least, it seems to be helping somewhat. At night, he is taking singulair, allegra, flonase nose spray and patenol eye drops. In the morning, it is just the allegra. Last night, he didn't cough all night. Finally, the poor kid got some rest.

Tonight, we plan to attend the Yankee/Met game at Shea Stadium. That should be fun. We are going with a large group and will be in the picnic area. We're hoping for a subdued weekend.

Thank you again for checking in and caring about our family. We so appreciate your thoughtful kindness.

With much love,
Donna

Tuesday, May 17, 2005 11:46 PM CDT

Hello again,

Well, I can't sleep so I figured now is as good a time as any to update. Let's start off with Molly. Today, she was seen at the clinic. Everything was basically OK. Her counts were good, with her ANC still running a bit high. Ideally, it should be between 750 and 1000. Molly's was a little over 3,000. Her chemo was increased just a drop and she began on a "new month" which consists of vincristine by IV today, steroids (decadron) for 5 days, zantac to protect her stomach from the steroids, oral methotrexate tonight and oral 6mp every night this week. Usually, she does pretty well with these meds, though the vincristine does cause pain in her legs and jaw along with constipation. The steroids make Molly so hungry and usually, she craves very salty things like bacon and salami. She is coughing a little from a post nasal drip and her eyes are watery. We think she has allergies just like poor Billy but Molly is still taking the antibiotic eye drops just to be extra careful.

Billy is suffering terribly from his allergies. The poor kid just sneezes and sneezes and when he's not sneezing, he's coughing. He's on all of the medication he can take but it might be time to start considering allergy shots for him. He is very excited about his little league game tomorrow, as he will be pitching a few innings. I really hope he does well, as it would be a great boost to his self-esteem.

Last night, we went to our bereavement group at the Center for Hope. Though the group ends in a couple of weeks, we have met a few very nice people there and I hope that we can get together over the summer on occasion. Billy really seems to find the groups helpful and Molly enjoys going as well. For me, it is good to be with other parents who are going through similar circumstances. Some of the parents there have lost a child as opposed to a spouse and that is quite sad as well. Any way you cut it, grief is grief and it is so difficult to deal with the loss of someone you hold so dear and love so much.

We are all trying to go about our lives with some outward semblance of normalcy but it seems that almost all of the time, I am reminded of how NOT normal our lives are right now. I know I keep saying a lot of the same things over and over but I can't help it...I just miss Roly so much. Today is 7 weeks from the accident. It has been 7 weeks since I've seen him or laughed with him or told him something funny about the kids. When I left the hospital today, I felt so alone. I would always call Roly on the cell phone before I had even left the parking lot to tell him what happened with Molly at the clinic and how she did. To ask what train he thought he would be on after work. To see how his day was going. Last night, the series finale of "Everybody Loves Raymond" was on. I think that might have been Roly's all time favorite sitcom, at least it was for sure of the ones currently on the air. He was really looking forward to seeing how they ended the show. I watched it for him and just sobbed through what should have been funny and touching. If you missed it, in the episode Ray has surgery and "almost dies." Everyone realizes how lucky they are to have each other and they tell each other that and they live happily every after. Roly used to say that his friends would compare him to Raymond and say that he was like him. I kept thinking how I WISH he was like that character...instead of dying, just having a close call and then we could have all said lots of nice things and lived happily ever after. I know that is not reality, probably not most people's reality but it sure is a nice fantasy.

I still hear Roly's voice all of the time in my thoughts. I know exactly what he would say in response to certain things. I still think sometimes that he will come home. This is all just so hard. To have someone here one minute and gone the next. I recently finished reading, "When Bad Things Happen to Good People" and that book gave me some solace and peace. I wish I could feel peace more than for a few moments at a time.

Well, I guess I should try to get some rest. Thanks to everyone for everything.

With love,
Donna

Sunday, May 15, 2005 10:21 PM CDT

Hello again,

Well, the busy weekend we had planned came and went and once again, it is Monday morning. First, the "good" stuff. Our friends from Rochester, New York arrived on Long Island safe and sound. We had a good visit with Randy and Lisa and their kids, Matthew and Caroline. Billy went to his sleep over at school on Friday night and he had a very good time. He was so happy to have Randy's and Matthew's company on the sleep over. However, he missed Roly and had difficulty falling asleep. Billy told Randy that it just "wasn't the same." Last year, Billy was thrilled to have his dad by his side for this event. Billy is right...it is not the same. We are so blessed to have such great friends and family members who support and help us but no-one can fill the void we feel due to Roly's absence. That void is very deep.

While the boys were at Billy's school, the girls went to my sister-in-law's house for a pocketbook and costume jewelry party. They had some great stuff and we had a nice time socializing and shopping.

On Saturday, we were the honored guests at a fundraiser for children afflicted with leukemia. The organization that ran the fundraiser is called "Pins for Pauly" and each year, they hold a bowl-a-thon in order to raise funds. Paul was a wonderful boy who loved to bowl. He lost his battle with leukemia at the age of 15. His family is dedicated to keeping his memory alive by helping others who are going through treatment for this illness. There were so many people at the bowling alley and Molly threw down the first ball with the assistance of a PBA bowler, Joe Biscardi. Mr. Biscardi was so kind, as was everyone involved with the event, especially Paul's family and friends. Both Molly and Billy had a great time. We thank everyone at "Pins for Pauly" for inviting us to share in this special day.

After the bowl-a-thon, we went to Billy's baseball game. He had his own cheering section that day! Many thanks to all of our family and friends for coming to watch the game and support Billy.

When the game was over, some of our family members came back to the house to visit and offer a helping hand with a few things. Thank you all for being so special and helpful. A special thanks is extended to our cousin Dave who power-washed all of the kids' outdoor toys. Though he was drenched by the time he was done, the toys looked great and the kids can now enjoy playing on them without me worrying that they are "too dirty" to climb on.

Sunday was a day of trying to relax and getting the house back in order for the week. We enjoyed a nice breakfast with our friends in the morning and then Randy did me the favor of hanging a clock and a picture in Billy's room. These are the things that Roly always did in a snap so I never really learned how to do them. Then, Randy and Lisa planted a rose bush they brought with them to honor and remember Roly. This bush is supposed to bloom for a long time and I am looking forward to that. Roly brought me fresh flowers SO OFTEN, especially roses and tulips. Each time the bush blooms, it will be like he is still giving me that precious gift. Thank you Lisa and Randy for being so thoughtful. Later, after our friends left, my parents picked up the kids and took them to my brother's for dinner. I just didn't feel like going so I stayed home and cleaned up the playroom, as it was fairly trashed from all of the playing and performing that went on earlier. That was actually an incredibly difficult thing to do for me. It was the last thing Roly and I did together the night before he died. Periodically, we would just go through the toys and trash the broken ones while donating the "good" ones that the kids have outgrown. I kept thinking about that Monday night that Roly and I spent in the playroom, talking about regular things like re-painting over the summer and getting some new chairs for our living room. Roly said he was really tired so he went to bed before I did. I remember climbing into bed an hour or so after him and snuggling next to him, as he was already asleep. God, I miss that.

So, that is what our weekend was like. It seems that no matter where I am or what I am doing, my thoughts are almost always consumed with Roly and how I sad I am that he is not here for so many things. He would have loved to have visited with Lisa and Randy, he would have so enjoyed the bowl-a-thon (as he was a GREAT bowler himself), he would have power washed all of the toys himself, we would have watched the finale of Survivor together last night while we TIVO'd Extreme Makeover Home Edition and the list could go on. In fact, if he was here we would have attended at least one of the four First Holy Communion parties we were invited to but I just couldn't do that yet without him by my side. I am starting to find myself a bit angry with him too and that is unsettling at times. Then I feel guilty because I know the accident wasn't his fault. The litany of "if only's" and "what if's" runs too often for my taste. In my heart, I know that Roly was just a good, solid regular guy going to work to try to provide the best he could for the family he loved so much. He didn't deserve this and neither do we. A tragic accident is so hard to deal with sometimes. The sudden loss is so shocking to your system. No time to prepare, no time to say good-bye, no time for anything.

Well, as always we remain very indebted and grateful to all of our friends and family who continue to help us in so many ways. I must once again thank my coworkers at the Baldwin Middle School who have again started to send dinners to our home a couple of nights each week. That is such a help and we so appreciate that. Also, truly I am in awe of the Caringbridge community who helps me in ways you will never fully appreciate. Sometimes the words you leave in our guestbook are so comforting or inspiring. Sometimes it is good to know that people are praying for you and thinking of you. Sometimes it is just helpful to know that you are not alone in your suffering and it helps to turn your attention to another and try to provide them with just a little tiny drop of the comfort you have been provided with. In so many ways, we are blessed and we thank you all.

With much love,
Donna

Friday, May 13, 2005 6:20 AM CDT

Hi again,

We are headed for one BUSY weekend. I think that is a good thing overall. As I mentioned yesterday, very dear friends are coming to Long Island from Rochester this weekend. Molly's godmother Lisa and her family will be staying with us and we are so happy about that. Billy is VERY excited for his sleepover at school tonight. He has been talking about it all week. His teacher called yesterday though to tell me that at one point, Billy got very sad and quiet and told her that he was thinking about how Roly attended the sleepover with him last year. God bless his teacher who always seems to handle these moments with the utmost compassion and expertise. She supported him and validated his feelings and it wasn't too long before Billy was back to feeling better. I guess this sleepover is a "first" for him and as those of us who have lost a loved one know, the "first" of anything can be very difficult. At least I am comforted to know that our friend, Randy (Lisa's husband) and Matthew (Lisa and Randy's son) will be right there by Billy's side and he is excited about that. So, while the boys are off "roughing it" at school, the girls will be at my sister-in-laws shopping for spring pocketbooks and costume jewelry.

Tomorrow is Lisa's nephew's First Holy Communion so she will be spending the day with her brother and his family. We on the other hand have been the invited guests to a fundraiser for leukemia. This organization, "Pins for Pauly," holds a bowl-a-thon each year to raise money to assist families dealing with childhood leukemia. It began after a family lost their son Paul to this dreaded disease. Paul loved to bowl so this is one way they honor and remember him. Ironically, Roly loved to bowl too and he was on a team when he was younger. Billy now bowls on a team. Molly was actually selected as the "Guest of Honor" and she will throw out the first ball with a professional bowler by her side. Billy and I will bowl together and the morning promises to be a lot of fun. In the afternoon, Billy has pictures for baseball and then a game.

Who knows what Sunday holds in store? I guess we'll wait and see.

On the "grief front," I am starting to dread going into my bedroom. It is the one room in the house that I feel almost slapped by every time I enter it. It is so painfully obvious that Roly is not with us in that room. I haven't been able to bring myself to touch any of his things yet so they all sit there as if he'll be home any minute to use them. It makes me so sad. I am thinking about changing the room around and getting new furniture (which we needed anyway...we have had our set since we picked it up at a tag sale right before we got married. Time for the Early American dark pine to go). Somehow, I think that might help me to feel a little better.

Molly seems to be feeling pretty well. She was so excited to go to my brother's house last night, where we all ate dinner together. She adores her cousins, especially Sophia. She was so happy to take a big bubble bath with Sophia and Emily and then proceeded to play dress up for a while. It always makes me feel better to see her laugh and smile. Billy was happy to go with his cousin Katie to her soccer practice. It's great that the kids are not only cousins but true friends too. My sister-in-law told me a story of how recently, Emily let a balloon go into the sky and she was upset. Roseanne told her to make a wish and maybe the balloon would go to Uncle Roly. Emily wished that it would and she later told Roseanne that she also wished Molly would get all better. What a good kid.

OK, I guess that is the news for now. Thank you all a million times over for your continued support and kindness. Please continue to pray that we get through this busy weekend and that everyone continues to heal as we travel along trying to create a new way of living for ourselves.

With love,
Donna

Thursday, May 12, 2005 6:33 AM CDT

Good Morning,

Billy has just gotten on the bus and the day begins for us again. Somehow, yesterday was "OK" during the day, at least for the most part. I felt a little bit like myself again. I actually felt a little hope surface. Then by evening, those feelings had dissolved and I was left with such an empty, lonely feeling once again. Grief is really so complicated. There are so many manifestations of it. Even Molly told me last night that she felt "lonely for daddy." Those things break my heart but thankfully, Molly moves on quickly and she is a happy child most of the time.

Billy continues to struggle, as one would expect. He is becoming more argumentative and has been back-talking more. I am trying very hard to be patient while still setting limits and putting reasonable consequences into place. I know he needs an outlet for his feelings...I just wish he didn't have to deal with all of this. So much for a little boy to understand and process. A friend told me about an agency that runs bereavement groups through the summer and I am going to look into that. Perhaps that will be a "good" thing to do while the group we originally joined is on summer break. I hope to speak with the intake coordinator today.

Molly was seen at the clinic yesterday. She is doing well overall. We think that she might have a little conjunctivitis so I am now putting drops in her eyes a few times a day. She is NOT liking that. I think what she has is probably more allergy related, since we all seem to suffer from similar symptoms in the spring but to be safe, she is being treated. Her counts were good...in fact, her ANC was 4,000. That's high. The doctor wasn't concerned and said we would see what it was next week before we decide if her chemo dose should be adjusted.

Tomorrow, our good friends from Rochester will arrive. I am very happy about that and so are the kids. We have a busy weekend ahead. Billy will be sleeping at his school on Friday night, as the school sponsors this program called, "Prime Time" wherein the children participate in activities centered on reading instead of engaging in TV watching and electronic toys. It all culminates in a sleep over. Our friend, Randy will be sleeping at school with Billy along with his son, Matthew. Billy is so happy about that. Last year, Roly went with him. Lisa (Molly's godmother) and Caroline (Lisa's daughter) will spend Friday night with Molly and me, while we "shop" for pocketbooks at my sister-in-law's pocketbook party. It should be a nice night.

OK, I will catch up with you all a little more later. As always, thank you so much for keeping us in your thoughts and prayers.

Love,
Donna

Tuesday, May 10, 2005 10:38 PM CDT

Hello everyone,

Well, we did it. We took our first trip to Florida without Roly's physical presence, though I have to believe that he was with us in spirit. We are home now. My dad picked us up from the airport, my mom has gone back to her house, the kids are sleeping soundly in bed and here I sit again, so tired but not tired enough to put myself into bed before total exhaustion hits. I just don't want to lay there and think once again of all of the "if only's" and "how come's" and the like.

We all so enjoyed our time in Florida with Roly's family. Billy is already saying how much he misses his cousins Megan and Bryan and both Molly and Billy want to go back very soon. The kids also really enjoyed seeing my brother George and his wife, Crystal. Perhaps another trip is not too far off. For now, Billy is looking forward to seeing his friends in school tomorrow. Molly is just happy to be laying in my bed again.

I have to say how much I was dreading coming home to "an empty house." I kept imagining what it would be like if Roly waiting for us at baggage claim. How the kids would run up to him. How I would be smiling ear to ear to see him. How he probably would have greeted me with a flower or two after having been gone without him for a few days. It is just so sad that this is no longer our reality and that a new reality is awaiting us. I so wish we had our lives back the way they were before Roly died.

I must tell you however that my dread of coming home to an empty house was interrupted by quite a few pleasant surprises that really touched my heart. Roly's dearest friend, Tim, went out of his way to leave me a bouquet of flowers on Mother's Day. He is such a good guy and Tim, I thank you from the bottom of my heart. It was so incredibly thoughtful of you. My neighbors put the flowers in water so don't worry, they still look good. I was also greeted by a bunch of Mother's Day cards and that was so very kind of the people who sent them. Thank you so very much. And many, many thanks to everyone who wished me (and the kids) well in our guestbook here on the web page. Your entries mean so much to me so really, thank you. And then, there was the HUGE box of scrapbooking supplies and albums that arrived at our home thanks to our good on-line friend, Kristie. Kristie's daughter, Kendrie also has leukemia and we belong to the same on-line leukemia support/information group. Kristie has been a true friend from the first day I "met" her. In fact, she is the one who introduced me to the "ALL-KIDS" LISTSERV group. Everyone from the "ALL-KIDS" group has been so very, very supportive. I don't think I would make it through some days without all of you standing beside me, encouraging me, supporting me and praying for me. THANK YOU ALL! Kristie came up with the idea of helping our family to cherish and preserve our memories from the wonderful "Make-A-Wish" trip we took just two weeks before Roly died. She belongs to a local scrapbook club in Georgia and she shared our story with her group. The group was so touched by our family that they got together and made us ***THE MOST BEAUTIFUL ALBULM*** to put our treasured photos in. It is absolutely gorgeous. Billy and Molly "oooed" and "ahhhed" over it many times tonight. I cried, I was so incredibly touched by the kindness, compassion and generosity of virtual strangers. Even in this nightmare, I cannot deny that I am very blessed and luckier than some others who do not have this kind of support. There are no words sufficient to thank you all.

If that wasn't enough, also packed in the box I received from Kristie was an incredible amount of additional scrapbook material so that the kids could make their own special memory books from our trip. Kristie told me that some of our on-line friends from ALL-KIDS donated these supplies and I cannot thank them enough for their thoughtfulness and ability to give, even when faced with their own tremendous difficulties. I especially want to thank our friend Kim, whose son Andrew is not feeling well. Kim spent her Mother's Day in the hospital as she sat by Andrew's bed. Many thanks to Beth, whose son Kyle has been struggling so much with his health lately. She has really gone out of her way to be supportive to us. And to my dear friend Apryle, whose son Victor just today received a stem cell transplant from an unrelated umbilical cord after relapsing with ALL, thank you so much for all of the things you sent to us. You are all such special people and there really is no way that I can thank you sufficiently for your kindness. All I can do is ask that those of you reading this page, please say a prayer for all of the kids suffering with these horrible illnesses and for their families, that they may be able to remain strong and steadfast in their care of their children. Many, many thanks again to EVERYONE who continues to lift us up in prayer and who supports us in so many ways.

With much love and gratitude,
Donna

Tuesday, May 10, 2005 8:23 AM CDT

We are still in Florida, though only for a short time more. We leave this afternoon and will arrive back in NY this evening. I am so glad that we took this trip. We ALL needed a break away from home. Billy and Molly had a great time with their cousins and friends here and I was able to get some help with the kids and a few moments to myself. Everyday that goes by that I do another thing without Roly by my side is one more thing accomplished and a step closer to feeling competent and independent again. Too bad that this journey still has millions of steps left to go.

Tomorrow Molly has a clinic appointment. Billy returns to school and life begins again at home, as does the task of trying to figure out ***how*** to live our lives without Roly by our sides.

I again want to thank everyone who checks on us, leaves us messages and especially who prays for us. I just believe that there is no way I could function without the prayers that are being offered. Thank you from the bottom of my heart.

Love,
Donna

Monday, May 9, 2005 8:19 AM CDT

Hello to everyone,

Well, yesterday was not easy but we again made it through another "first". My sister-in-law Vicky and I agreed that instead of saying, "Happy Mother's Day", we would just say, "It's Mother's Day"! I am glad that we were here for Roly's mom. In addition to Mother's Day, we celebrated my nephew Bryan's confirmation, which will actually take place this evening. More family will arrive today from Miami and we are really looking forward to seeing them. The kids LOVE being in Florida. They enjoy swimming in the pool so much. Molly is a little fish! Billy had a great time swimming too.

On Saturday, I managed to get to Sanibel with my mom and sister-in-law Crystal and it was beautiful. Just what I wanted and needed. I find that now, the only "relief" I feel is rather fleeting. Moments are peaceful but truly, they are only moments. My mind is still occupied so much with Roly and the unanswerable "why" did this and "how" did this happen. They are torturous questions and intellectually, I know that I will not be satisfied yet I continue to torture myself. Dumb to do I know but I guess this is a phase that I will have to work through and find a way to come to peace with it. I miss having Roly by my side so much. I miss our conversation, the joy that I always saw on his face when he was playing with or watching the kids. The kids feel his absence all of the time too. Today Molly woke up and said, "You know what I was dreaming about? When I went to the hospital with a nosebleed and Daddy came and visited me there". It's such an adjustment to live without him but we are trying.

Well, the little ones are up and wanting to go back in that pool. I better go put the sunscreen on and get them ready.

With love,
Donna

Sunday, May 8, 2005 10:51 AM CDT

Happy Mother's Day to all the moms and to everyone who functions like a mom. Today, I will keep it simple and share with you the poem Billy wrote for me today. It reads:

My Mom

Like a protective shield.
She Loves to be with me.
And wants to have daddy back.
She is loving and caring.

I think that says it all. With all we have lost, I still have so much. Two beautiful children. Thank you Roly for the best Mother's Day gifts a woman could ever hope for. I love you.

With love,
Donna

Saturday, May 7, 2005 8:39 AM CDT

Hello to everyone from sunny Florida. We made it. It was all so overwhelming to pack and get here but we are here. I left Molly's carry-on bag by curbside check-in by mistake and didn't realize it until I was through security and at the gate. It took some persuading to go back to the street, but I was able to locate the porter who helped me and he knew exactly where my bag was. He walked me to it and was happy with the fat tip I gave him. I was happy to have the bag back. We were able to board the plane first, I cleaned the seats with Lysol wipes, put Molly's mask on and prayed for the best. All of the carry-on stuff fit overhead and we did great on the plane. However, the airline lost Molly's stroller. We're hoping that it turns up today. They were very nice about it though and gave us a loaner. I guess if they can't find it, they will replace it. It is not really a big deal, we are just happy to be here.

Both kids were thrilled to see our Floridian family. My brother and sister-in-law picked us up and we thank them both. Billy and Molly were so happy to see my in-laws and their cousins. They weren't here for 5 minutes before the bathing suits were on and they were in the pool. Vicky (Roly's sister) and Pat (my brother-in-law) made a delicious dinner and it was just a nice evening. Vicky and I soaked in the hot tub for a little bit and that is always a treat. Molly tried to sleep with Megan, her 16-year-old cousin, but no luck, she ended up in bed with me. That was fine. This morning, Billy woke up with a very stiff neck and he has been very uncomfortable. I feel so bad for him. I'm hoping that the advil and ice we put on his neck will be enough to make him comfortable. For all of you who pray, please say a prayer that this resolves ASAP so that he can enjoy himself without hurting. The plan today is to hit the beach with Crystal, my brother's wife and anyone else who wants to go. I'm not sure if the kids will be coming but if they do, I am going to enlist "babysitters" so that we can all have some fun. I am so comfortable here but of course, we all miss Roly's presence. That is actually such an understatement. He would have so enjoyed being among everyone and watching the kids in the pool. It is STILL so unbelievable that this all happened.

This trip has forced me to think of how I used to be before Roly and I became so intimately connected and partnered. I was a very independent young woman. I was not someone who was afraid of challenges and took on new ones without too much hesitation. If I encountered difficulty, I found a way to work it out, much of the time on my own. As Roly and I became a true "couple", I loosened up on the independent front a bit and began to rely on him, in a way that I relied on no-one before. For so many years now, I have been accustomed to doing things, especially things having to do with the kids, as a "team member" and now, I need to do many of those things as an individual. I know I was able to do lots of things as an individual before and I know I will be able to them again. I just wish I didn't have to. Not for this reason at least. Roly's death is not just the most profound loss I have encountered, it is forcing all of us to find a new way to live. What used to be can no longer be and that is hard to adjust to and accept. Lots of things will be similar but not the same and in our family, we all like things to be stable and consistent.

So, I guess it is time to get my own bathing suit on and start the day. Thank you all so very much for checking on us and caring about us. We wish you all a peaceful day.

With love,
Donna

Friday, May 6, 2005 0:13 AM CDT

Well, it is about 1:15 AM EST. I am "almost" done packing for our trip to Florida tomorrow. It is so very strange to pack without Roly. I always packed my things and the kids' things. Roly packed his own suitcase. But Roly always put together the carry-on bags, camera equipment, etc. He set the lights on timers and cleaned the fish tank and tested the alarm before we left. He dragged the suitcases out of the crawl space to our bedrooms and then back down again when they were packed. He turned off the water and made sure that the house was as "safe" as possible while we were away. Now I am doing this by myself. Thankfully, my mom who is going on the trip with me tomorrow, came to my house and slept over. She helped me to go through the mail and papers to make sure that everything that needed to get done actually got done. I am very thankful for that.

The kids are both very excited about going to Florida to see their grandparents, aunts and uncles and cousins. I know they will have a great time. I am just hoping for a little peace. A break from this so difficult reality. Someone wrote in our guestbook that when you are grieving, it feels like you are walking through jell-o. That is so true. Everything feels heavier, slower and more difficult to do. My mind is almost always focused on more than one thing at a time and that is very exhausting. I just want and need a little break. I keep feeling like I am going to forget something. It is truly more anxiety provoking to prepare for something like a trip when you are the sole person responsible for making sure that everything goes smoothly.

Well, I am going to try to update from Florida if I can. Thank you a million times over to all of you kind people who keep checking on us, caring for us and praying for us. We really appreciate that and believe me, the more people that are praying, the better off we are so thank you. We hope you all have a good weekend.

With much love,
Donna

Wednesday, May 4, 2005 10:58 PM CDT

Hello to everyone,

I find myself once again at the keyboard, feeling exhausted yet still unable to find enough peace that I can go to sleep and "forget" this reality for a little while at least. We are all still struggling to find some sense of normalcy in a totally abnormal circumstance. Each morning when the alarm goes off, I get up and force myself to be as positive as I can be because I don't want Billy to greet my pain first thing in the morning. So, I drag myself out of bed wishing for "just five more minutes" and wake Billy as gently as I can. He too is wishing for "just five more minutes." Eventually, he gets up and joins me in the kitchen for some breakfast. I make his lunch, help him to get dressed and organized and then we watch a few minutes of Nickelodeon before the bus arrives and I send him off with a hug, smile and a wave. All of this used to be shared between Roly and Billy. I think Billy really misses that time in the morning with his dad. As soon as the door closes, Grief, my uninvited guest pops in for his morning visit. I wish He would go home already. Or at least get out of my house but it seems like he's here to stay for a while. I hate Him.

After checking my e-mail, I usually try to catch a few more winks but soon after, Molly is up and she wants her breakfast. Then the day really begins. All of the daily chores await. I am trying so hard to do them but sometimes, it is truly overwhelming. Before I know it, it is time to get Molly to school. We have been late every day. Everything just seems to take longer now. I sit with my friends at the Morgan Center and try not to burst into tears but most of the time, I do. I just can't help it. Sometimes it just comes upon me, like the need to sneeze. No matter how much I try to suppress it, I can't and then it comes on full force. After Molly's school has ended for the day, we run a couple of errands or go home for a little bit. Then it is time to pick Billy up from school. He doesn't like to take the bus both ways so I pick him up. I usually get greeted with a smile but very few comments about his day. When I do press, I usually hear about who wasn't kind to him or what was difficult. He is focused on what went "wrong" instead of what went "right." We are really working on that. Then, we're off to home for a quick snack and homework. Molly usually wants to do "homework" too. Then it's baseball practice or bowling or some other activity. Then dinner, bath and the LONG chore of trying to get the kids into bed begins. Where is the "supernanny" when you need her? (Our nanny is great but believe me, my kids could benefit from that supernanny on television.) Once they are asleep, I get a few moments to myself but by then, it is too late to return calls and I am so tired that I can't even enjoy watching television. I am hoping that the whole routine will improve soon.

The kids are getting very excited about their trip to Florida. While I am looking forward to it too, I am still not packed and I truly dread traveling without Roly. My mom will be coming with us, as I have a brother who lives in the same town as Roly's family. Mom will visit with George and my sister-in-law Crystal while I stay with Roly's family. I am sure though that I will spend a lot of time with George too, as my family is very close with Roly's family. In fact, we are all more like one family than two families brought together by a marriage. I am still hoping to get that beach time.

Tomorrow, Molly has ballet and tap class. She just loves that. Billy will be meeting with a social worker to talk one on one a little bit. I met with a social worker myself today (as I did last week) and speaking with her does in some small way help. She is very kind and reassuring. Billy will be meeting with this social worker's husband and I only hope that he finds this therapist as comforting as I find his wife.

Please continue to pray for us all as we struggle to take control of our lives again. It is truly very difficult and we so appreciate all of the prayers and good wishes sent our way.

With much love,
Donna

Tuesday, May 3, 2005 10:30 PM CDT

Hello to everyone,

I am very tired tonight so I am going to keep this kind of short for now. Molly and I went to the clinic today with Chelsea, our nanny. We brought Chelsea to show her how to get to the hospital in case she ever needs to go there and so that she could meet some of the people who work at the clinic. I have to say, the staff and parents at the clinic have been so incredibly kind and supportive to us. We thank them all so much for all that they have done.

Molly's counts were basically ok. Her ANC (absolute neutrophil count) was a little over 800, which is pretty much OK. We have decided to go to Florida for the weekend to be with Roly's family for Mother's Day and for our nephew Bryan's confirmation. We are all looking forward to a change of scenery and some warm weather. I am hoping that I will actually get to go to the beach for a couple of hours. I just want some time to think and lay in the sun. Of course, that will only happen if Billy and Molly agree to let my sister-in-law watch them! Let's hope for the best with that. It will be good to see everyone but oh so strange to be in Florida without Roly. I dread even trying to get the suitcases out of the crawl space and packing. Roly always helped so much when we traveled. Just less than 2 months ago, we traveled to FL for Molly's Make-A-Wish trip. How I wish I could turn the clock back!!

My heart still aches all the time but I am really trying to be there for the kids. I want to keep their lives as normal as possible, which is not always an easy thing to do.

Thank you, thank you and thank you again for all of your kind words and guestbook entries. All of your support means more than you will know. Thank you all so much.

With love,
Donna

Monday, May 2, 2005 10:36 PM CDT

Today was another incredibly difficult day. I can't believe that tomorrow will be 5 weeks since Roly died. I can't believe that it has been 5 weeks since I've seen him or touched him or just talked to him. I just can't believe any of it. I MISS HIM SO MUCH!!!! I never knew that grief can actually cause one to feel physical pain but apparently, it can and does. I feel like I have a hole in my heart, like a huge part of me is missing. I want to scream from the pain of this! I want my husband back! I want him to put his big, clunky shoes by the front door. I want him to throw his Yankee jacket on the chair. I want him to toss his newspaper under the table in the foyer. I want to watch my kids run to the door when they hear it open and shout, "Daddy's home!" I WANT IT ALL BACK!! It's so unfair. I need him, the kids need him. How could this happen to us? How? I am so lonely for him. He was my best friend truly. The only one who really knew me inside out and backwards. The one who could finish my sentences and read my thoughts. The one who loved me totally and completely for me. How did this happen? I want my husband back!

All day on and off, I just can't seem to stop crying. Roly's parents went home to Florida today so the house is quieter and I guess that makes me miss Roly all the more. At least when they were here, I felt like I had a piece of Roly with me. I know I have that with the kids but they are our future while Roly's parents are his past and present. I miss them too and so do the kids.

Tonight Billy, Molly and I went to a place called the "Center for Hope" for our first bereavement group. Billy asked me about it first thing in the morning. I think he couldn't wait to go. Billy met with kids his age in his own group and Molly met with kids her age in another group. One of the social work interns from the hospital we go to for Molly's cancer treatment also interns at the Center for Hope and the director assigned this woman, Megan, to Molly's group. When Molly saw here there, her face lit up and she was attached to Megan's side. Molly just loves to be around "big girls." While the children met, the parents participated in their own group. Everyone introduced themselves and of course, as soon as it was my turn, I was a sobbing mess and could barely get my name out and my reason for being there. I still can't believe that we belong to this "club." Everyone was so incredibly nice and supportive and as sorry as I am for everyone's profound loss, it was in a way comforting to be among people who "got it." Those who are living it and can actually say with at least some legitimacy, "I know how you feel." Both Billy and Molly really seemed to enjoy the evening, which consisted of some play, a story dealing with death and an activity aimed at helping the kids to developing their coping "tools." Billy and Molly want to go back and the group meets again in 2 weeks. Then, 2 weeks after that is an "end of the year party" and the group will not meet again until September.

On the medical front, Molly has a clinic appointment tomorrow afternoon. We are hoping for nice, strong counts. I will let you know how it all goes.

Thank you all as always for your thoughts, prayers and support. Without it, I don't know where I would be.

With love,
Donna

Sunday, May 1, 2005 10:34 AM CDT

Hello to everyone,

For those of you who are Eastern Orthodox, Happy Easter and Christos Anesti (which means Christ has Risen).

Yesterday was Molly's birthday and for me, it was an incredibly difficult day. I missed Roly so much and was so sad that he was not here with us to celebrate his daughter's special day. However for Molly, it was wonderful and I am so thankful and happy about that. She looked absolutely beautiful in the pink and white polka dot dress her Aunt Julia sent her. Her Aunt Effie sent her sparkly, rhinestone hair clips and they looked adorable. I can't help but remember how on her birthday last year, her hair was falling out and rather sparse. There would have been no way she could have worn hair clips then. Seeing her look so healthy and beautiful this year is a reminder of how far we have come. Only 10 more months of chemo to go!

Molly's party was terrific! It was held at a place called "Kitchen Time" and the woman who owns and runs the party place, Terri, is fabulous with the children. She is so funny and the kids just loved the party. Almost all of Molly's friends from the Morgan Center came and it was really nice to see them enjoy themselves in such a "normal" setting. After making their own English muffin pizzas, they helped to spin the salad and cut the cucumbers. Then, Molly got to make the icing for her cake while wearing an adorable chef's hat. Terri then gave each of the kids "icing tattoos" and they loved that. After the party, my family came back to our house and indulged in the party standard at the Guarton house, a 6 foot hero and deli salads. Molly opened her gifts...she got the most beautiful dresses and nightgowns. Everyone knows what Molly likes! She got her first bike, decked out in the Disney Princesses of course, and many great new toys. (Many thanks to Dominick who put the bike together.) I gave Molly a beautiful locket with pictures of her and her dad side by side. She got a little sad when she saw it but I think she will treasure it in the years to come. Overall, Molly had a great day. Billy enjoyed the party too and had lots of fun playing with his cousins.

Today, we will go to my brother Van's to celebrate Greek Easter and Van's birthday, which is tomorrow. Tomorrow, my in-laws will return to Florida. I know they need to get back home but we will miss them a lot. It will be yet another adjustment with them being gone.

Thank you all for visiting our webpage and caring about us. Thank you for the birthday wishes in the guestbook, via snail mail and every other way they were delivered too. We really do appreciate your support, prayers and kindness. There is no way we could get through this without the support we are receiving.

With much love,
Donna

Saturday, April 30, 2005 7:30 CST

Today is Molly's 4th Birthday. She is so looking forward to today and I am looking forward to seeing her happy. She is going to have a birthday party at a local cooking place where she, Billy, her cousins and friends from the Morgan Center will be making their own little pizzas. She is excited about that. She has been through so much this year that she really deserves a special birthday celebration.

How I wish her dad was here not only in spirit but body too to celebrate it with us. Yesterday, the kids made pictures for Roly and we attached them to a bunch of helium balloons and released them. Billy's picture had a boy crying many tears on it and all over the page he wrote, "I love you" and "I miss you". That broke my heart. Molly made a picture of her and her dad side by side. At dinner (take-out Chinese), I jokingly asked Molly when she was going to sleep in her bed again and she told me, "When daddy comes alive again and sleeps with you". Then she actually started to pray to God asking Him to please make her daddy alive again. So, we all started to cry at the table and Molly looks up at me and asks, "Are you a little bit sad"? I nodded yes and then she sang me a song she made up about Roly. Sometimes she is so darn sweet and cute and other times....well, it's her birthday so I won't say it today but let's just acknowledge that if they remake the movie "Sybil", Molly's got a shot at a lead role. One thing that did give us a laugh last night was our "fortunes" from the fortune cookies. Roly's mom's said something like, "Faith means believing that there is an ocean when you can only see the stream". Wow we thought. I couldn't wait to see what mine said. It said, "It's time to ask that special someone out on a date". So much for the prophetic power of fortune cookies.

It is very strange to wake up today and not have Roly beside me. We always worked as a team when we were getting ready for a party or company. Almost each time, I am telling the truth, I would say to him, "There is no way I can do this without your help. Thank you so much for really helping me to get this all ready." So, I don't know how I will do it today, but at least Roly's mom and dad are here and so is our nephew Joe. I guess between us all we'll figure it out. We at least figured out how to shampoo the carpet last night. Roly was the one who always steam cleaned the rugs but I did figure it out. With Joe's help and my mother-in-law's coaching, I have to say that the rug looks so much better. It had gotten filthy from all of the traffic in the house in the last month. So as hard as it is, we are doing our best to move on but with each step that I take and each breath that I breathe, I miss Roly so much. I'll update later and let you all know how the birthday goes.

Friday, April 29, 2005 7:35 AM CST

I started to write a journal entry last night after we returned from the Yankee game but honestly, I was just too wiped out and decided to go to bed. I will tell you though that we had a fantastic time (even though the Yankees did not win). About 40 of Roly's coworkers and friends attended the game and though we sat in the VERY last row behind home plate, I felt like we were as close to heaven as we could have been and so it was the best seat in the house. To all of Roly's coworkers, especially Alberto who organized this event, I cannot thank you enough. It was wonderful to see that Roly was so loved at work, a place he spent so many hours at each week. I am so grateful to you all for your support and kindness. For your willingness to share stories and help me feel closer to my husband. For being so sweet and generous to my children. Thank you from the bottom of my heart. Roly's coworkers told me that a conference room will be named in his honor and that meant a great deal to me. To know that he will not be forgotten at Kaplan. This company, Kaplan Inc., has been amazing in their support of us. Their willingness to help us in any way that they can means more than words can say.

Today would have been Roly's 40th Birthday. Happy Birthday Sweetheart! I love you with all that I've got...to infinity and beyond. And I miss you that much too. I am expecting today to be difficult and so far, the tears have been flowing. I find myself back to "How did this happen?" "Why did this happen?" Today was supposed to be a day more like this:

The alarm would go off and I would roll over and tease Roly that now, he is as old as I am. Each year for the 13 days between our birthdays, Roly would tease me that I was a year older than him and I would argue that I was only 13 days older than him. Then he would say something like, "Yeah, but you're 39 and I'm still only 38. I guess I just like OLDER women." The kids would have come in and would have given Roly their handmade cards. The phone would have been ringing with birthday wishes from early in the day. Aunt Judy would have probably been the first to call with Roly's sister being a close second. (His mom had planned on being with us anyway so no phone calls from her or his dad. They would have just hugged him and kissed him and wished him a happy birthday in person). Roly would have gone off to work where his amazing coworkers probably would have teased him all day about being 40 but they also would have gotten him a cake and celebrated with him. I would have nagged him to come home early and we would have gone out to this Hibachi restaurant with everyone and then tomorrow, we would have either gone away overnight without the kids or would have just had a great night to ourselves. Roly was not a materialistic guy so presents didn't mean that much to him though I would have gotten him some new CD's and the newly released, "Meet the Fockers," as he loved that movie. Maybe some new shirts and shorts and probably a bathing suit. His favorite cake/pie was Lemon Meringue, not really a favorite of anyone else's but I would have made sure that it was on the table when we got home from the restaurant, along with pineapple soda. Roly had some strange tastes. It would have been a very happy day for all of us, especially with Molly's birthday being tomorrow and my brother Van's birthday on Monday. This was always a very celebratory weekend and by the end of it, we had all always had way too much cake but never too much fun.

Instead of feeling joyful, I feel so sad and lonely without Roly here. Especially today. While I am truly grateful for the time we had together and the life we created for our kids, I am greedy and want more of it. Since I cannot give him the gifts I would have liked to have given him, I will share with you just a few of the abundant gifts he gave to me in the 20 years he walked beside me on this earth.

Roly gave me the gift of true, honest unconditional love. No strings attached. Ever. I never once questioned his love for me. I would have bet my life that we would never have divorced because no matter what, he loved me totally and completely...for all my good and not so good.

Roly taught me about patience. Though I understand this wasn't always his strong suit as a youngster, he was a VERY patient man as an adult. He was not the type to fly off the handle. He was a great problem-solver and he was always so reassuring to me about so many things. He quelled my anxiety when no-one else could and always made me feel safe and secure.

Roly was the best dad a woman could hope to have for her children. He was involved in the intimate details of the kids' lives and they also know how much he loved them. He was openly affectionate, said I love you all of the time, never once laid a finger in anger on either child but rather hugged and kissed and held both of them with his big strong arms. Billy told me that he always felt protected by his dad and he just looked up to him so much. Molly really adored him beyond words. These children will struggle with the loss of their dad but they will never, ever question his love for them.

Roly gave me the gift of self-esteem. Before I met him, I was always focused on what I was lacking rather than what I had to offer. He changed all of that in his love for me and enabled me to love myself and then share more freely that love with others. I am who I am today directly in response to my relationship with him.

Roly taught me about optimism. No matter how difficult a situation was, he was always looking for the bright spot, for the silver lining in the cloud. He taught me that no matter how bad a situation was, we would get through it because we had each other. Now I will have to honor that goal of "getting through it" alone but I will do that for him and the kids. We will all get through this nightmare and create a life that Roly would be proud of. When I am reunited with him in Heaven, I want him to say, "I knew you could do it. I'm proud of you Don, you did good." Then I'm going to slug him just once for leaving me to do it alone.

Roly gave me a second family. I am one of the few lucky people who can honestly say that my relationship with my in-laws is as close as my relationship with my family of origin. I love and respect Roly's parents so much and I am so grateful that they are in my life. They are unbelievable grandparents to our kids. Billy and Molly truly adore them both and they are so amazing that they have put their own grief aside to help me and the kids and to be there for us. I know without a doubt that no matter where life takes us, Roly's mom and dad (and his whole extended family for that matter) will always be right beside us. Roly's sister told me that while Roly gave her many gifts, the best gift he gave her was a sister that she never had and Vicky, the same is true for me. I love you so much and you will always be my sister. Your whole family is in my heart forever. All of Roly's aunts, uncles, cousins and everyone not related by blood but by love, you are our family and I am so grateful to Roly for giving that not only to me, but the kids as well.

Roly introduced me to a great group of friends. So many of those we hold so close in our hearts were Roly's friends first and then became mine as well. To Tim and Andy...Roly treasured you beyond words. I hope you know how much he loved you, through thick and thin. You were the two people he regarded as brothers. Andy, would you believe he still carried your prom picture with Amy in his wallet? To both of you, I thank you for meaning so much to Roly and now I will treasure you both not only for me, but Roly as well. To Karine and Amy, you have both been so special to me and I owe my relationships with you to Roly's introduction. Thank you both for being such great friends. I love you very much. And the rest of "the gang"...there are no words to sum our feelings for you all. You brought many, many smiles to Roly's face. He still laughed to the point of tears many times recounting stories from the past. I so hope we all remain close as the years go by.

There is so much more that I can say but I think this is too long already.

Happy Birthday Rol. I miss you so much. Stay near me...I need you and so do the kids.

With all of my love forever and always,
Donna

This is a poem that my friend Nadine wrote about Roly. I wanted to share it with you today.

You never saw his shoulders
for others leaned upon them
You never saw his hands
for they were offering their aid
You never saw his fears
for his smiles would always hide them
Yet his presence was always there
in the silent strength you saw

Wednesday, April 27, 2005 10:09 PM CDT

Well, tonight I am going to try very hard not to focus so much on what we have lost but rather, on how grateful I am to everyone who has been there supporting us, loving us, praying for us and thinking of us. Roly and I knew that our immediate family was very blessed with many good friends and awesome extended family to help us through difficult times. The last month though has brought that understanding to a whole new level.

I cannot express in words how completely overwhelmed I am by the love that has been shared with me, my children and my family during this tragedy. From almost the moment I found out about Roly's death, friends and family members were by my side helping me to do what needed to be done. Truly, there is no way that I could have gotten through this month or could carry on through the ones to come without all of your love and support. "Thank you" seems too small to say but honestly and with the utmost sincerity, I thank each and every one of you from the bottom of my broken heart. You have made it possible for me to get up each day and function. To be there for the kids. To go about daily tasks. To live when I sometimes wish I did not have to. I am particularly moved by all of you angels who I have not actually met in person but who take the time to check in on us and leave us notes of encouragement and support. I am in awe of the goodness of people. It is truly a blessing to have so many incredible people share themselves in such a way that one can only conclude that the world is not all bad and in fact, is made up of countless compassionate, human, loving individuals. I read and re-read the messages you leave in our guestbook and I am so comforted by them. I often cannot even believe how much time and effort some of you have put in to share something with me. For those of you who have also endured a significant loss, I am so grateful to you for sharing your stories with me. Knowing that others have been through something like this helps because I know it is possible to recover and move forward, even when I feel like I will never recover or look to the future again.

Though each day is difficult, today I was able to put the sadness aside for a little while. My cousin Christine came over with her beautiful little girl, Savanna and she helped me make copies of Molly's birthday CD. Each year, Roly and I made a personalized music CD for the kids. Then we copied them and made adorable labels for them. We gave them out as birthday party favors. But this was very much Roly's job on the technical end (of course, I always "helped" to pick out the songs and theme). Without Christine and our friend Jerry's help, the CDs would not have come to fruition. I also have to thank a dear on-line friend, Katie, who designed the background of the CD label and E-mailed it to me. Katie's beautiful daughter, Hunter, also has leukemia yet Katie took time from her busy life to help me. Thank you all so much. These CDs will bring much happiness to both kids, as it is a tradition they love and look forward to. And also, MANY THANKS to EVERYONE who offered to help with this project! I am so appreciative of each offer. It means a great deal to me.

After the CDs were completed, I was able to go and meet with a bereavement counselor. The counselor was very, very kind and it just helped to go and cry and talk without concern for the emotions of the person I was talking to. Billy will be seeing another counselor soon. He is the husband of the woman I saw and I think it will be good for him to speak with a nurturing male figure.

Billy had a better day today and I am very grateful for that. He didn't fall apart in frustration at his homework and had fun at baseball practice. Molly was so happy to play with Savanna and even though she got a nosebleed this morning, a hospital run was avoided as it stopped bleeding after about 15 minutes. Whew...that was close but we were relieved that it did stop without the need for a FFP transfusion (fresh frozen plasma). I was able to order food for Molly's party and get most of the paper goods so I guess things are moving along on that front. Tomorrow, we plan on attending the Yankee game with Roly's friends from work in honor of Roly's birthday, which is Friday.

Thank you all again for the tremendous support and encouragement you offer us. Thank you for the prayers. I ask that you please continue to pray for us, as we continue on our journey to a new and unknown land.

With love,
Donna

Tuesday, April 26, 2005 9:54 PM CDT

Some days are just sadder than others. Today was an especially sad day. Perhaps because it was 4 weeks ago today that Roly left this earth. Perhaps because today I had to pick out the bronze memorial plaque for his grave. Perhaps because today is the first time I returned to the cemetery since Roly's funeral. Perhaps because I couldn't talk to Roly as I normally would after leaving the clinic with Molly. Perhaps because everything is so different and I just don't know how to go about my life without my best friend.

I cannot begin to tell you how much I miss my husband. I want desperately to feel better and experience more than a moment of relief but truly, I just feel so damn sad and lonely. I want to tell you all that we are doing better but it is just not so. The more time that passes, the more I seem to ache for Roly. I would give years off my life to just have 5 minutes more with him. To just tell him all of the things that are in my heart. To have had an opportunity to say good-bye. It is so hard to have someone taken from you so suddenly with no warning or preparation. I know that Roly knew he was loved and treasured by me and the kids too but still, when you are living the type of stressed out life that we lived the past year and a half due to Molly's illness, exhaustion and worry wear you down and you focus on what is absolutely necessary to get through the day as opposed to that which would enhance the day and make it more meaningful and special. Today I am filled with "If Only's....." I am also tortured by the unanswerable, "Why" question. I feel like screaming at God, "OK!! Enough already! Whatever You want me to learn, I'll learn it! However You want me to act, I'll do it! Whatever You wish, I will acquiesce! Now PLEASE...just make this all a bad dream and let us all wake up and start over!!

Today, Molly was seen at the clinic. All was well medically and that was great news. Her counts were basically fine. The doctor increased her chemo a little bit, as Molly has grown some and gained a little weight. She looks good and she is excited about her birthday party. She asked me though if Roly could come to the party. Each day, she talks about her dad and each day she asks me again and again what happened to him and where he is. It is such a struggle for her to understand. I know she misses him a great deal. She kisses his picture when she sees it. She has regressed to using more "baby talk" than she ever used before.

Billy had a bit of difficulty at school today. He is overtired each morning, as he is having trouble falling asleep at a reasonable hour. On the playground, he got into a disagreement with another child over a swing. Some other kids got involved and Billy felt picked on and ostracized. He cried a lot and though a teacher intervened and tried to help, Billy was just so sad. He told her that he felt like he didn't have any friends (which is not true) and the only one he could turn to was an imaginary friend he invented named Larry. He too is missing Roly so much.

I am so hoping that tomorrow goes just a little bit better than today. I want so much to feel better, not only for myself, but for the kids too. As much as I try to put on a "brave face" for them, they are smart and they know that what they see is not the whole truth. For those of you praying for us and thinking of us, thank you. Please keep it up. I think we are needing it now more than before.

With love,
Donna

Monday, April 25, 2005 10:12 PM CDT

I wish I could tell you all that today was a better day and that we are beginning to adjust to not having Roly with us but that would just be a lie and lying is not something I want to do. Every crisis I have faced in my life has had the potential to turn out OK. Shortly after I gave birth to Billy and found out that I had thyroid cancer, I was understandably terrified. I endured two surgeries, one of them quite extensive, and took a large dose of radioactive iodine to deal with any residual cancer cells. The iodine caused me to be radioactive and prevented me from holding and even being in the same room with Billy for many weeks but in the end, I came out just fine. I am considered to be "cured" at this point and the only reminder of this illness that I am left with is the daily pill of synthroid that I take and my twice yearly visits with the endocrinologist.

After weathering this storm, Roly and I decided to expand our family and we were so blessed to have Molly almost 4 1/2 years after Billy was born. We were a truly grateful family. We knew that we were lucky to be alive and healthy. No matter how much the kids drove us nuts during the day, not a night went by that I didn't slip into their rooms to check on them and kiss them with much gratitude while they slept. Then, cancer struck it's ugly head again...this time not at me but at our 2 1/2 year old daughter. We were so devastated at the diagnosis of leukemia but typical of me, I went into "information gathering" mode and read everything I could on her illness. Roly and I consulted with the best doctors in the country and after learning all that we did, we felt optimistic about Molly's prognosis. Even though she is considered to be "high risk" for relapse, she has favorable genetics and was considered to be a "rapid early responder." In reality, both of these things probably reduce Molly's chance of relapse but to be on the "safe" side, she is being treated aggressively with lots of tough chemotherapy on a "high-risk" protocol. Though the last year and a half had been so difficult for all of us, we felt that we would get through it and be an even stronger, more appreciative family. We figured Molly would go on to medical school and Billy would become so incredibly compassionate and resilient, that he too would want to go into medicine or some "helping" profession. (OK, maybe not but parents can dream, can't they??)

Now, still in the midst of Molly's treatment, we are hit yet again with another huge crisis though this time, I know it won't turn out "OK" because nothing we do or say will bring Roly back. No matter what, I have lost my husband and my kids have lost their dad. Roly's parents have lost their son, his sister lost her brother and so many lost a true, good friend. No matter how hard I try to keep it "normal" and "stable" it is NOT normal. Today I read that 4% of boys lose their dad to death prior to the age of 18. I don't know the actual percentage of kids who get leukemia but I would think compared to the general population, it is a low percentage. How is it that we keep falling into these low percentage groups?? Why couldn't we just fall into the low percentage group of people who win the lottery?? I just don't get it.

We have to learn how to let go of what was and create a new way of life and that is something that will take a very long time, of this I am sure. We are all so sad in our own ways. Not too long ago, Roly and I saw Billy Crystal in "700 Sundays," his one man Broadway show about his relationship with his family and his dad in particular. Billy Crystal's dad died when he was a teenager and he figured out that he only had 700 Sundays with him. Our Billy only had 432 Sundays with his dad. Molly only had 204 Sundays with him. Billy Crystal spoke in his show about how after hearing that his dad died, he felt as if he was carrying a huge boulder of grief around with him wherever he went. Not everyone saw it but it was always there with him. That is something like I feel now. No matter where I go or what I am doing, I am carrying the boulder with me. It is so heavy and hard to move but I must take it because it refuses to be left behind. I hate it. I just don't know how this will ever be "OK."

Tomorrow Molly and I will head to the clinic for a checkup and counts. On a more positive note, she seems to be feeling well and is acting fine. She has a lot of energy and today, at her request, I took her, Billy and Molly's friend Kiera to "Build-A-Bear" for an early birthday celebration. Molly made a really cute "glamour cat" and she dressed it in a poodle skirt, monogrammed blouse and chiffon scarf. Kiera's unicorn was all decked out in an evening gown and wrap while Billy's koala bear was "cool" with his denim shorts, sunglasses, cell phone and back pack. It WAS great to see the kids so happy. We then rode the carousel in the mall and ate "Annie's" pretzels. It was a nice morning. Billy got to spend the rest of his afternoon with his grandmother and cousin at Jillian's (a fancy video arcade). Today is the only day that he is off from school so grandma decided to spoil him. Good for him. He has been so down that I was glad he got to do some of his favorite things. Still though, he told me while he appreciates all the things he did and was given, all he wants is his dad back. Me too. Billy also had a baseball game tonight and he did great. He got 2 hits and played in the position of catcher for a couple of innings. He has much more confidence this year and is no longer afraid of the ball. I know Roly would have really liked to have seen him play tonight.

Well, I guess that is all the news for now. As always, thank you so very much, all of you, for taking the time to check on us and to leave us so many kind notes of support and encouragement. We really appreciate it.

With love,
Donna

Sunday, April 24, 2005 7:19 AM CDT

I was brought up in the Greek Orthodox Church. Today, it is Palm Sunday for those of us who are Greek Orthodox. Although Roly was Catholic, he agreed to be married in the G.O. Church and our children are baptized G.O. (In reality, the two religions are almost identical). If you ever saw the movie, "My Big Fat Greek Wedding," you will have a perfect idea of what our courtship and wedding was like. Honest. The movie was not really far off at all. My dad owned a diner, my brothers worked there, I was the hostess/cashier. My dad was not crazy about the idea of me dating a non-Greek but once he got to know Roly, he loved him without a doubt as much as if he was his own child. Roly howled with laughter during that movie. So did I. We never even knew how funny some of our experiences were until we saw them on the big screen. God how I miss him.

Roly actually enjoyed Palm Sunday in the G.O. Church. After services, it is tradition to have a fried fish dinner. My mom makes this really garlicky sauce for the fish and Roly loved that. It is a meal that usually we make only on Palm Sundays. I still can't believe that he won't be with me today. It seems that as soon as I begin to really think about the fact that he is gone, my mind "short circuits" from the pain of that thought and I find myself back in this weird state of denial and numbness.

I feel like for now, I am just existing for the kids. There has been no joy at all for me since those officers showed up at my front door. I can smile at something the kids do but immediately, along with the smile, is an ache that Roly is not here to see it too or to at least hear about it. Sometimes I call his cell phone just to hear his voice on the outgoing message. I want to leave him a message..."Hi Rol, it's me. You never pick up the cell phone! What's up with that? Anyway, what time will you be home from work tonight? I have patients at 7:00 so try to be home a little early so we can eat dinner together. Oh, by the way, Molly did the funniest thing today. She dressed herself up in her velvet dress from Christmas and decided to do her own make-up. I knew she was too quiet. I took a picture with the digital camera so you can see it later. Oh, I almost forgot, Billy has a baseball practice tomorrow. See if you can arrange your schedule so you can catch part of it. OK, talk to you later. Love you. Bye." But I don't leave that message. I just hang up and wish that things were different.

Molly has started to say things like, "Remember when daddy was in the car with us and we went to the movies to see Racing Stripes?" She is thinking about him and wants to share her sweet little memories. Billy is fairly quiet on the topic these days. I worry about him. So much for a little boy to handle. Yesterday, he cut every coupon that came in the paper. He told me that he wanted to do a job that his father did. It was a running joke of sorts between Roly and me. Each week, Roly would cut the coupons and I would tease him and say, "Why are you wasting your time doing that?? You know I never remember them and rarely use them." He would laugh and say something like, "Yeah, but here's a great one. A dollar off Edy's. If it gets doubled, and it's on sale, you could almost get it for free." Then we would have a good laugh but he would keep cutting those coupons. His mom definitely impacted him. He loved a great bargain. So, now Billy is cutting the coupons. I think I'm going to have to remember them and actually use them.

On the medical front, Molly's nose has not bled in a week. Thank God and thank all of you who have been praying so much for her with that. She completed her course of steroids yesterday and honestly, she is a bit of a beast. Those of you who have kids on steroids know how much it can impact on their personalities. She has demanded and eaten shrimp cocktail for breakfast more than I would like to admit to. With a side of bacon. Gross. But kids on chemo have very strange tastes. She wants only me to change her, bathe her, pour her juice, etc. She doesn't want me to leave her for a moment and that is tough. Even when I'm in the shower, she is popping in asking how much longer before I get out. It's understandable but maddening too at the same time. We go back to the clinic on Tuesday for a check up and for counts.

On the nanny front, we met Chelsea yesterday and we all liked her very much. She reminded me of my sister-in-law, Crystal. She was sweet and gentle. She actually went to school to be a nanny and had a resume. She drives and is almost 22 years old. We decided we would give it a try and see how it goes. I think she will be easy to get along with. I hope that she will come a few days next week just to spend some time with the kids and to get to know our routines before she joins us full-time, which will probably happen some time in May. As wonderful as she appears to be though, for me it is still so sad that I am getting a nanny because of our situation. I just want Roly back.

Many thanks again to everyone for their kind messages in our guestbook. Also, to those of you who have sent "snail mail," how sweet. The kids loved the cards and things you sent and we so appreciate that. Honestly, the kindness and compassion that has been shown to us is one of the few things that gives me hope during such a dark time in my life.

With love,
Donna

Friday, April 22, 2005 7:29 AM CDT

Hello again,

Usually when I sleep at night, I feel close to Roly. I think I have been dreaming about him or perhaps it's just a sensation that he is close by. This morning though, I had a dream that Molly wanted to go swimming in the pool. She started to walk in the water, even though it was not ready for swimming. It had leaves in it and the chemicals had not been checked. I said to her in the dream, "No, don't go in. We have to wait for Daddy to get home from work to fix it". And then in the dream it hit me that he was not coming home. I sat up with a start and that is how today has begun.

I say it over and over to myself...."He's not coming home"...in an effort to believe it. But still, most of the time I just don't believe it. When I do "know" that truth even for a short time, I am completely devestated. The pain is like nothing I have ever experienced before. The best analogy that I can give is this. For those of you who have children...do you remember before you gave birth to or held your first child for the very first time? Like me, you probably fantasized about how wonderful that would be...about how much you would love that child and how connected you would feel to him or her. Then the child actually arrives and what you actually feel goes beyond any fantasy, beyond what you knew you were even capable of feeling. I bet you didn't even know you could feel that level of deep love. So it is with loss. Most of us have probably thought at one time or another how terrible we would feel if we were to lose someone we love. Those of us who have kids battling cancer probably push that thought away as much as possible because for us, it is not just some crazy "what if" fantasy but a genuine concern or fear. Even with pushing it away, occasionally those thoughts pop in for an unwanted visit before we escort them out the door of our consciousness. Now that I have actually experienced the loss of someone I love so deeply, I can tell you that the pain is beyond any fantasy. Deeper than what I knew I was capable of feeling. Greater than any person should ever know or have to bear. It is so unfair. It should not be this way. We were so happy as a family. Even with Molly's leukemia, we were a happy, connected, appreciative family. And now, we are broken. No matter how much we look like we are doing OK, we are all broken in our own ways and it will be a long journey before we are put back together enough to feel "fixed".

Today, Molly has a birthday party for a friend at the Morgan Center. Billy has no school so he will go to his good friend's house to play for the morning. I am always grateful for activities like this because they fill the time and help us to feel just a little normal.

Thanks again for all of your care and concern. The messages you all leave for us are very much appreciated. It does give me comfort to know so many care and are praying for us.

With much love,
Donna

UPDATE: Thursday 4:00 PM EST

I spoke too soon about the nanny. She called today and she got delayed getting into town. She truly sounds lovely. When I told her that I was afraid I had scared her off, she laughed. At least she has a good sense of humor! We plan to meet on Saturday to discuss employment possibilities. I have a good gut feeling so keep those prayers going and wish us luck!

Wednesday, April 20, 2005 10:19 PM CDT

It's almost 11:30 PM. I am tired but not tired enough yet to put my head on the pillow. In order to get any type of sleep, I have to be just about delirious. I pray that CNN will have some boring story on so that I can set the sleep timer on the TV and just drift off without too many thoughts crowding my mind and creating noise.

Today, Billy made it off to school fine. I spoke to his teacher and she is an incredibly kind, supportive and competent person. Billy is very lucky to be in her class. I know that she will give Billy the attention he needs right now.

Molly went to school too today. We made it to the Morgan Center (a special preschool for children who have cancer), where Molly had a great time with her friends. I was so happy that she willingly went over her friend Kiera's house to play for the afternoon. Not only did it give me a little time to do a few things, it was great to see Molly feeling confident and secure enough to separate for a little while.

One of the things I was able to do was shop for a locket for Molly's 4th birthday on April 30th. I wanted to get her a locket so that she could put pictures of Roly and her in it. She always wants to wear mine, which has pictures of Billy and her in it. The one I selected for Molly is beautiful and she will love it, I am sure. I also treated myself to a new locket. All day today, I had been praying to St. Theresa to give me a sign that Roly is at peace and in a good place. When I went to look for Molly's locket, there on the jewelry tray was a gold locket with the saying, "Forever in my Heart" inscribed on the front of it. Right next to the inscription was an engraved rose, with a bud made from pink gold. It was the only locket with a rose on it. Inside the locket, it says, "When someone you love becomes a memory, the memory becomes a treasure." I just knew it was intended for me and so I bought it. I will put a picture of Roly in it and wear it in honor and remembrance of him. I hope it brings me comfort to do so.

I was able to make contact with a highly recommended therapist. Ironically, before this woman (who also happens to be named Donna) began working with bereaved families, she worked with families who had a child with cancer. I guess it was meant to be. I will meet with her next week and hope that Billy will be able to see her soon as well.

On a slightly funny note, I guess I successfully scared off the potential new nanny. She was supposed to call today but no such call came. I can just picture her running from the phone and destroying our number after hearing our story. I guess it is going to take someone very special (or crazy) to walk into this house and help us. Please pray that a special person (as opposed to the crazy person) comes into our lives. Again, many thanks for the e-mails and notes of support in our guestbook. One day when the kids are old enough to appreciate it, I will have these printed to they can see just how many people cared for our family.

With love,
Donna

Tuesday, April 19, 2005 10:27 PM CDT

Hello to everyone,

I wanted to tell you all that Molly did well at the clinic today. We arrived extra early and as scheduled, she received another transfusion of FFP (fresh frozen plasma) before her spinal tap and intrathecal chemo. We were there for at least 6 hours but we got through everything OK.

I couldn't help but think that three weeks ago today, Roly lost his life. Four weeks ago today, he was at the clinic with Molly and me as she got the exact same treatment as she did today. Molly was SO HAPPY to have Roly there with us that day. She proudly introduced her daddy to everyone at the clinic that morning. All day today while I was there, I kept drifting back to that morning four weeks ago. I kept picturing Molly nestled on Roly's lap, as he sat on the floor with his legs crossed reading her the same "Cat in the Hat" book over and over. He wasn't supposed to be at the clinic with us that day but it was the day after we returned home from our Make-A-Wish trip and Roly took off from work to help me get unpacked and organized. He knew that we had clinic that day and he wanted to help out with the laundry, mail and getting the suitcases put away. That was the kind of guy he was. Hands on and thoughtful. Loving and caring. That morning, he had forgetten to put the stroller in the trunk of my car. Since Molly had anesthesia, I knew she would need it so I called him and he came to bring it to me. Once Molly saw him there, there was no way she was letting him go back home to do what he had intended on doing so he just stayed with us. I too was so happy to have him there with us. It was a break for me and I loved seeing Molly so thrilled to be with her dad.

Today was very painful for me. I really missed Roly so much all day long. I just can't absorb all of this yet. It is still surreal.

Billy is in a lot of pain too. Today, I picked him up from school and it was just the 2 of us in the car. I asked him if he thought we would be OK as a family and he said "Honestly, I don't think so". When I asked why, he said, "It is just too much for you to do without daddy". I explained that I could get help but that is not the hard part. The hard part is missing him so much and no-one can take that ache away, for any of us. Billy then asked me if I thought anyone else in our family was going to die. I told him that I really didn't think so and he told me he was worried about Molly. He asked lots of questions about her illness and the medication and what if the leukemia comes back when she's done with the medicine. What I wanted to tell him was that I would surely have a nervous breakdown and end up in an institution if that happened but instead I reassured him that Molly was doing well and that we have every reason to believe she will be all better in time. Billy then voiced fears about losing me. Again, I assured him that I have no plans to leave this earth any time soon but he wanted to know what would happen if I did die. He asked if he would go to an orphanage. I explained that he would never go to an orphanage, as we have so much family and so many friends that would take care of him and Molly. He spoke of wishing he could trade places with Roly or go to heaven himself to be with Roly. In fact, he told me that he wished we could all just die now and go to heaven and be together there. It breaks my heart to hear him in this much pain. We discussed this for quite some time and I am hopeful that he understands a bit more that these wishes cannot nor should they come true. I told him that his dad would never, ever want that for us and that even though it feels like it is so far away, I have to believe that one day we will all be together again. I am going to call the bereavement counselor and his teacher in the morning to discuss my concerns about Billy a little further.

Molly continues to grieve in her own way. She continues to be very clingy and demanding of my attention. She asked to just call her dad on the phone. She wants to know WHERE he is. Heaven is just too abstract and I am hesitant to tell her that his body is in the ground, though that might be what I should tell her as this is so hard for her to understand. Another question for the bereavement counselor. I'm sure the next week or so will be extra challenging, since she is on steroids and that is never an easy time. Molly tends to sleep less, cry more and tantrum more on steroids. Let's hope it goes OK. The vincristine causes constipation and pain in her legs and jaw. It should be a fun week.

Roly's birthday is on April 29th and Molly's is on the 30th. I am so not looking forward to either of them. Roly's job called and in honor of him and his birthday, they are all going to a Yankee game and they want us to be their guests. I guess we will go, though I really don't feel like sitting in Yankee stadium without him. I know that Billy would really enjoy it though.

I know that I keep saying it but really, I can't thank you all enough for all of your support and kindness and prayers. It means so very much to me. I am trying to get back to everyone who calls or e-mails but there is little time to do this with the kids being so demanding. So until I do actually get back to you, please know that I am so grateful for your concern.

With much love,
Donna

Monday, April 18, 2005 8:14 PM CDT

It is 9:15 pm and I am sipping tea that arrived in a wonderful gift basket sent by friends, George and Claire. We "met" through an on-line support group for parents of children diagnosed with ALL (acute lymphoblastic leukemia). George and Claire, along with SO MANY others from this group have been so supportive and loving. To each and every one of you out there, thank you from the bottom of my heart. The messages in our guestbook have been comforting and we appreciate each and every person who has taken the time to leave us a message, to think of us and pray for us.

Today was another exhausting day. I cannot believe how tired a person can become from thinking. The kids and I started our day off by meeting with a social worker who heads the "Center for Hope". Here, we will meet with other families who are also taking the unwanted and painful journey through grief. Susan (the social worker) told us that most of the children in the groups at the present time have had a dad die. I think Billy felt a little better hearing that there were other kids like him who were missing their dads very much. At the meeting, Molly impressed me. During some "getting to know you" moments early in the meeting, Susan asked Molly questions about her school and friends. After a minute or so of small talk, Molly turned to me and said matter of factly, "When are you going to tell her about what happened to daddy"? It was as if she was saying, "Enough with the nice stuff...let's get down to business". And she's only (almost) 4 years old. I have said it before but I will say it again, I am going to be in trouble when she gets older! Overall, the meeting went well and I think the kids felt OK about it. For me, it was good to cry with someone who wasn't so emotionally involved with me that she wanted to stop me from feeling what I was feeling. We will begin going to the groups in the beginning of May.

Most of today I have felt tired, detached and somewhat numb. But then those waves keep crashing down every now and then and I find myself in a puddle of tears at the most inopportune moments. Tonight, I noticed that the newspaper had been tossed under a table in our entry way. It is the exact spot where Roly always tossed the paper when he got home from work. For a split second, I felt excited, like he was home finally and then I realized that it was just not true. Stabbing, gut-wrenching Pain. Tears. Then Numbness again.

Roly's parents went to the cemetary today. His mother said the grave was just covered with dirt, no sod yet. I still have to pick out the bronze memorial plate that will sit at the head of the grave. I CANNOT BELIEVE THAT I ACTUALLY HAVE TO PICK BETWEEN A BORDER OF ROSES, PINE NEEDLES, DOGWOOD FLOWERS OR A LOVELY MIXED FLORAL BOUQUET!!! I HAVE TO DECIDE BETWEEN "IN LOVING MEMORY" AND "ALWAYS IN OUR HEARTS". THIS IS JUST NOT RIGHT...WE HAD SO MUCH LIVING TO DO...so much living to do. I guess there's alot more to the cliche, "Life is not fair" than I once thought.

Tomorrow, Molly has a big day at the clinic. She has to receive another transfusion of FFP before receiving anesthesia for her spinal tap and intrathecal chemo. She will begin a cycle of steroids and vincristine along with other medications but the two I mentioned are the hardest on her. Thankfully, her nose has not bled since Friday so perhaps God is listening to those prayers. I suspect that we will be at the clinic for a while. Please pray that all goes well and that we get only good news from the spinal tap.

I'll let you all know how things go.

With much love,
Donna

Sunday, April 17, 2005 7:39 AM CDT

So, another day is done and the sun is up again. I never thought I would be so ambivalent about getting up and facing the new day. Part of me just wants to stay in bed and drift off to dreams of happier times and places but my mind (and my kids) won't really let me do that. Every "free" thought...those that are not occupied with things such as getting Molly juice or telling Billy to lower the television...goes to Roly and the shock I feel over the fact that he is not here. Although I know intellectually that he will not come home again, emotionally, I keep expecting to see him walk through the door. Thoughts of "why" overwhelm me and it is so frustrating because I will never have that answer but I still want to know why.

We are trying so hard to go on with some type of normal routine, although truly, that is a joke because nothing is normal without Roly. It would be fairer to say that we are trying to find a new way to live without him that is least disruptive to us all. I have decided to hire someone to live in our home (like a nanny/housekeeper) to help me get on with creating some stability. Although I have tons of offers of help from friends and family, what we need now is something consistent and predictable. It is too much for the kids and me to say things like today Grandma and Grandpa will be here at 4 and the next day we'll go to Aunt Ro's for dinner and the next day, Sheila will come and keep us company, etc. We WANT and NEED our friends and family but as an addition to our basic routine not as an integral part of it. I spoke with a young woman who might be interested in working with us and if she didn't run away from the phone with her hands over her ears after hearing our story, perhaps I'll meet her next week and talk more seriously about helping us out. How bizarre that I actually said something to the effect of, "Aside from the fact that my daughter has cancer and my husband died tragically and suddenly, we are a very normal family". Ha! What a crazy statement!

Yesterday was a lousy day for me. It was my 40th birthday (please, no birthday wishes needed). I had just wanted to spend it with Roly and that as we know is not what happened. It started with a bang at midnight with yet another profuse nosebleed for Molly. She must have picked at the scab from the cauterization and we were off to the races. Back to the ER. I was so upset because yesterday morning was Billy's Little League parade at 8:30 am and I promised him I would be there and march with him. I literally begged the ER doctor to find a way to get us in and out and thanks be to God, she did. Because we have been to the ER so often, I knew not only the nurse but also the resident and attending doctor. They were amazing in their care of us. The attending was able to convince hem-onc doctor to give Molly the transfusion of FFP in the ER without going up to the inpatient floor. The nurse brought an additional stretcher into the room and actually put me to bed next to Molly so that when she was done, I wouldn't be too tired to drive home. Thankfully, Roly's sister Vicky was with me and even she got put to bed around 5:30 am. We left the hospital at 7 am and made it home just in time to shower and get to the parade. So, we got through it by the skin of our teeth.

I want you all to know that truly, we appreciate all that everyone is doing to support us during this time. Some are close by and some are far away but everyone's care and concern is so great and we all thank you for it. Today Roly's sister goes back to Florida to her family and we will miss her lots so say a prayer that she gets home safely and the we handle her leaving OK. I am at a loss as to Molly's nosebleeds so those of you who are so inclined, please pray that they STOP already. The poor kid has been through enough with this.

Many thanks again,
Donna

Friday, April 15, 2005 8:01 AM CDT

As I lay in bed this morning with Molly nestled next to me, my thoughts drifted to a time many years ago that I visited the beach on the east end of Long Island. It was a beautiful day and I decided to go for a swim. I was a fairly good swimmer at the time, had passed many life saving courses and was in decent shape. While I swam out, I got caught in a rip tide and I knew that there was no way to fight it. I had to go with it and hope to get free before it dragged me under for good. In reality, I was only caught for a very short time and I did get out of that but it felt like a long time. As I swam to shore and stood up, a huge wave came over me and pulled me out, tossing and turning me. I could feel myself getting scratched and cut by the bottom of the ocean floor. Every time I managed to get up and stand, another wave came over me and again, I got tossed and thrown about in the water. This went on for a while. Eventually, I made my way out of the water, exhausted but OK.

I couldn't help but think this is what I am experiencing now in terms of grief. Though I am a good "swimmer" and I have a lot of good coping skills, I feel like I am being dragged out by the rip tide, hoping to get free. When I am freed for a moment, a huge wave over comes me, knocking me around, injuring me more. When I catch my breath and I think I am OK, another wave comes. I am still waiting to make it to shore.

It is so hard to get up every day and carry on with the business of life. It's not that I can't do it...I just don't want to do it without Roly by my side. I just miss him so much. I long to see him, to talk to him, to touch him...all of it. I want to tell him the funny things the kids did during the day, like how Billy learned how to write a check in school. He wrote a check for $1,000,000 to Pizza Hut and in the memo area he wrote, "Yum". Roly would have laughed a lot at that. Or how Molly put on her dance receital costume and just danced, and danced, and danced some more while demanding us to do it with her. Each time we tried, she told us it was wrong and to sit down. There is no pleasing some girls! It is in the mundane that I am missing Roly the most, though I am sure the "big" events like birthdays and holidays will stink without him too. Tomorrow is Billy's T-Ball parade. Roly always marched with Billy and the team and Molly and I parked ourselves on the route, waiting to wave and cheer. Then we would join them and march the rest of the way to the ballfield for the opening day festivities. It will be hard without Roly this year.

Molly is doing alright at the moment. Her nosebleeds have stopped for now so perhaps the cauterization did the trick. She is not eating much at all though. I think it is because of a medication that she is taking to help her clot more efficiently. I will talk to the doctor about cutting it down or stopping it now that she is not bleeding. Emotionally, Molly is still very clingy though she did play at her friend's house yesterday. Interestingly, it was her friend's dad that she went with and as soon as she saw Dominick, she looked up at him and said, "My dad died". Perhaps she felt good being in a young man's company. Last night as we went to sleep, she asked again why her dad is not coming home. It is such a hard concept for her to understand.

Billy is doing OK as well, though he continues to be so very angry. He had begun to take it out on some of his classmates but through the kindness and compassion of his teacher, he understood that he can't do this and he seems to have worked it out with his friends. He told them though that he just has so much anger inside and it "takes him over". For very different reasons, Roly had a temper as a child (or, at least that is what I have been told). He took up playing the drums as a way to express himself and he became quite a proficient drummer. I plan to sign Billy up for drum lessons and hope that he has an interest as Roly did. That would make Roly very happy and proud.

Many, many thanks again to all of you who are checking on us and praying for us. So many of you have called to check in and the truth is that I really appreciate the calls but I am just exhausted and it's hard to talk about everything all day. I promise to get back to all of you eventually, it's just some time that I need now. Please feel free to continue to call...if I'm not up to it, someone will take a message and I will get back. E-mails are always welcomed, as I read them when I get a few moments of peace to myself.

Wishing all of you a peaceful day.

Love,
Donna

Tuesday, April 12, 2005 8:04 PM CDT

It is 2 weeks ago today that I received the worst news of my life. Tuesdays are not good days for us. It was a Tuesday on September 11, 2001 that I thought I might have lost Roly along with my brother and my sister-in-law's sister. Thankfully we were spared that day, though many others we hold dear to us were not. It was a Tuesday that we got the official diagnosis that Molly has leukemia. And it was a Tuesday that I was told by 2 tactless police officers standing at my front door that my husband had died in an accident on the way to work. Tuesdays are not good days for us.

So, we have all gotten through another day...barely. I feel as if I am almost a robot, going through the motions of what absolutely needs to be done and not one thing more. The mail is still unopened from 2 weeks ago. Molly's birthday is at the end of the month and by now, her party would be planned and Roly and I would be making her very own personalized birthday CD. Every year we make the kids their own CD's filled with their favorite songs and with their picture and birthday theme on the face of the CD. We give them out as party favors. This was Roly's area of expertise. I am lost on how to do it. Roly's birthday is the day before Molly's. I am not looking forward to it. Each day there are constant reminders of his absence and I still find myself shaking my head in disbelief. Today was a very hard day with Molly at the clinic and I found myself missing him so much.

For those of you who have been following our story, you know that Molly has been having severe and frequent nosebleeds which have caused her to be hospitalized twice and transfused many times. Today, I had to return to the hospital where Molly received another FFP transfusion to help her clot. While receiving the FFP, she actually got yet another nosebleed. We were seen by the head ENT and though his scheduling practices are lousy, his skills are great. He cauterized Molly's nose and we are hopeful that this will put an end to the problems we have been having with regard to this. The procedure was however very traumatic for Molly. Three adults had to hold her so the doctor could do what he needed to do, blood pouring out of her nose and Molly crying hysterically, begging us to stop. At one point she said pathetically, "I just want my daddy" which of course, brought me to tears too. All I could do was say that I wanted him too but that I was there and that I love her and she will be ok. She got through the procedure and actually has endured packing in her one nostril without trying to pull it out. That is a small miracle in and of itself. After the cauterization, we went back up to the clinic where Molly received her monthly dose of pentamidine, an IV antibiotic. She was exhausted. Me too. Thank God that my dear friend Nancy came to the clinic to help me and keep me company. She stayed all day and even had someone else pick her kids up from school so she could be with us. What a doll and comfort she is. Still though, I wish it was Roly that had been there with us.

Tonight, I took both kids to the toy store. Molly had certainly earned a reward and there was no way I would leave Billy out so of course, he got a treat too. So, one new doll and some new Pokemon cards, both kids seem pleased. It is good to see them smile, if only for a short time.

Thank you all so much for continuing to check on us and pray for us. Your messages in the guestbook really do bring comfort so thank you for taking the time to share your thoughts and feelings. We so appreciate it.

With love,
Donna

Monday, April 11, 2005 11:05 EST

We are home and exhausted. What a frustrating day. Molly received her transfusion of FFP and began on a new oral medication to help her clot more efficiently. We waited all day to see the head ENT but then he left the hospital without seeing Molly!! We think that she has to have her nose cauterized. I have to call tomorrow and see if the ENT can fit her in, which will mean another trip back to the hospital which is where his office is.

THANK YOU ALL SO MUCH FOR THE PRAYERS AND SUPPORT!! There is NO WAY I could get through this without all of your support.

With love,
Donna

Monday, April 11, 2005 1:10 AM CDT

Hello friends,

Truly, I feel as if I am at my breaking point. Molly is again in the hospital. It's 2:00 am and we are finally in a room on the hem-onc floor. I have answered the litany of social history questions about my pregnancy with Molly, how many stairs we have in the house, how well she eats and so on. I am so, so tired and I still cannot believe that I no longer have Roly to share all of this with. As Molly's nose bled yet again, I had to tell Billy that we would not be home tonight. Of course, he was not happy about that and I was forced into the situation of choosing between the kids' varying needs. Billy is home with Roly's parents and sister while Molly and I are at the hospital.

The questions about when Roly will return continue for Molly. I am just so tired and drained from it all. Let's hope we get some answers about these nosebleeds soon. She will be getting yet another FFP transfusion this evening.
Will let you know what happens. Please continue to pray for us. We all need it more than you know.

With love,
Donna

Saturday, April 9, 2005 8:10 AM CDT

Hello,

Just a quick note to tell you that Molly's ANC is up, way up due to the medication she was given, GCSF. It is now 27,000 and that means that she can resume some chemo. She started with oral meds last night. We will return to the clinic on Tuesday and have her counts retested.

Friday, April 8, 2005 6:31 AM CDT
Good morning,

I feel like I'm living in some crazy parallel universe rather than the real world. It's almost the same as it used to be yet it's totally different at the same time. As the days go on, my heart aches for my husband more and more. I keep thinking I can't hurt more than I already am hurting and then I do. If it was not for the kids, it would be completely unbearable. But having a child with leukemia makes "falling apart" an option that I just cannot exercise right now.

Billy and Molly continue to express their pain in their own ways. No-one is sleeping too well. Billy is brought to tears easily and Molly asks more and more each day for her dad. Yesterday, she wanted to know if he was feeling better yet and when could he come home? She actually asked if Roly still loved her. It rips my heart in pieces when this happens because it's almost like I'm telling her the horrible news for the first time over and over again. We have alot of help and company and while that is a good thing, it is still not "normal". We so appreciate the e-mails and messages in the guestbook. The prayers especially are comforting. Thank you all so much for your kindness and support. Molly will return to the clinic today and I will update later to let you know how she is doing.

Love,
Donna

Wednesday, April 6, 2005 0:00 AM CDT

Again, I want to thank each and everyone of you who has taken the time to check our webpage and leave us a note of encouragment and support. It means a great deal to me and I have to believe that all of the prayers being offered are helping us to get through the days.

Today, I took Molly to the clinic. She is still neutropenic and has an ANC in the 300's. This means that her chemo is being held for the 2nd week. She is getting injections of GCSF or neupogen, which we hope will stimulate her neutrophils (infection fighting cells) to multiply. Her nosebleeds are lessening and that is a good thing. She is missing her daddy so much and that is very heartbreaking for me. She told me today to go upstairs, put a dress on and some jewelry and to "go find daddy and bring him home"! No matter how many times I told her that I couldn't do that, she insisted that I could. That was a very hard moment.

Billy is starting to get angry. He lashed out a bunch of times, understandably so. He misses Roly so much and is still confused. Heck, I'm still confused, so I can only imagine what he feels.

The days are long and the nights are longer. I can't help but think of things that we used to do together. I feel so sad that Roly will not be around to do these things with me again. Please continue to pray for us all.

With love,
Donna

Sunday, April 3, 2005 8:15 PM CDT

Hello everyone,

Another exhausting day but we made it through. I keep telling myself, "one day at a time..." but sometimes I think, "One moment at a time..." is more appropriate. Molly was discharged from the hospital this morning. She ended up receiving both blood products, packed red cells and FFP (fresh frozen plasma). She did get another nosebleed today but we were able to get it under control without the need for another hospital run. Thank God for that.

It still seems totally surreal that Molly and Billy's dad, my dear sweet husband is gone. I keep shaking my head in disbelief. I am so sad and that is the understatement of the century. The kids miss him so too. I literally ache for him...for his touch, his voice, his smile. I know the days ahead will only get harder, as the loss of our Roly becomes even more and more apparent in our everyday lives. Billy plans to return to school tomorrow. I am sure it will be a difficult day for him. I hope to bring Molly to the Morgan Center as well. I want to try to get back into a semi "normal" routine as soon as possible for the sake of the kids. All of the chaos this week has been so hard for them. Please continue to pray for all of us, as I believe it is only this that is sustaining each of us.

With love,
Donna

Sunday, April 3, 2005 9:00 am

Yesterday was Roly's funeral and burial. It was so terribly difficult and sad but I am glad that it is done so that we can begin to figure out how to live our lives without him. It's like not knowing how to walk or talk suddenly. You don't realize how much you depended on a person and how much you will miss them until they are gone.

After the funeral and cemetary (which by the way, this very LARGE church was filled almost to capacity for Roly...some parishoner exiting the prior mass asked was it someone "important" who died. It sure was. She thought by the turn out it was a dignitary or someone political), we went to a restaurant to swap stories about Roly. Instead of doing that as planned, Molly got yet another nosebleed and lost yet another point of hemoglobin. Long story short, we are inpatient in the hospital to get transfusions of Fresh Frozen Plasma and packed red cells. We hope to go home later this morning. Please pray that whatever this cloud is that is hanging over our family blows away. Thank you all again for your outpouring of love and support.
Love,
Donna

Friday, April 1, 2005 12:50 AM CST
Update:

There are not enough kind words in the English language to express to you the essence of who Rolando H. Guarton was. Rolando, who I and everyone have always called Roly, was the gentlest, most loving and unselfish person I have ever been blessed to have known. He has been my best friend for the past 19 � years, my confidant, my soul mate. Just being in his presence made me a better person. He enhanced my life and provided with me so much joy. A part of me died the same day that Roly did.

There is no way I can capture all that he was in a paragraph but here are some things that will help you know the kind of human being he was. He was a genuinely happy man. Always the optimist, always finding the bright spot in the hardest of circumstances. He was always ready with a word of encouragement, a big smile across his face and a genuine willingness to lend a helping hand to anyone in need. Everyone who met him truly loved him. He was humble and unassuming; quiet at times, hilariously funny with quite the sarcastic wit at other times. He was strong and not daunted by difficult tasks. He pushed himself to be the best person he could be, always challenging himself to stretch a little further. He had a mind for math and computers. Anytime there was a technical question of any type, everyone would say to call Roly. He could figure it out in a snap. He was talented with all types of tasks around the house, except for plumbing. He was really a lousy plumber. But he was the best painter around and never once scoffed at doing something to improve our home. He could fix anything with his ingenuity and a little duct tape. He loved music and was such a talented drummer. He loved playing regularly in his band during his younger years and relished the too few times that he played with his friends during our more recent years. He was a great Yankee fan and had hopes for the team this season. He was facinated by the circumstances surrounding the death of JFK and read many, many books on it. He was convinced of the conspiracy theory and told me that he actually wanted to visit the grassy knoll in Texas before he died. His interest in this topic was a source of many laughs between Roly and me. Roly liked to eat and create interesting concoctions in the kitchen. We would laugh and say sometimes, �watch out�this is a Roly meal�, which meant that he put left-overs and staples together in the most�interesting of ways. He made the best omelettes on Sunday mornings and even decorated the plates with elaborate decorations made of fresh fruit. Everything he did with us and for us was done with love.

He was a friend to everyone. Reliable, honest and completely trustworthy. Always the designated driver in our younger years. Our friends would joke that he was so responsible and level headed that he was like a dad rather than a peer, even during his teens. Other kids' parents would call Roly and yank him out of bed at night to go looking for their kids and to tell them they had broken their curfews and it was time to go home. He would do a favor for anyone, whether they asked or not. He was only too happy to lend a helping hand. He was a great listener, a supporter and a joy to be around.

As a son, no parent could have hoped for better. Roly was devoted to his family. He loved his parents deeply, as he loved his sister and brother-in-laws, nieces and nephews, grandparents, aunts and uncles and cousins. He was so family oriented. Nothing brought him more happiness than to be all together, sharing in a game of dominoes while sipping on some pineapple soda. He relished the times we had together and though he missed his family who relocated to Florida, he was still so connected to them all. He was thoughtful beyond words. When his Uncle Roberto came to visit from Cuba, he took him to the Yankee game and made sure that the light up score board welcomed him to New York. He would help his mom or dad with anything they asked for. He not only loved his family, he really liked them all as well and appreciated each member for their special gifts and talents. He was especially devoted to his grandmother Linda and his godfather, Soto, both of whom also died too young. His grandfather, "Papi" was someone he treasured beyond words. Roly was so happy to be with everyone recently on the Make-A-Wish trip we just had in Florida. It was such a blessing to be all together making such happy memories just a short time ago.

As a husband, there was no-one who could have fit with me any better. We have a very deep love that surpasses this world and will go on into eternity. He never criticized me and truly loved me unconditionally. Not many people can say that and have it be true, but it is true. He always told me that I was beautiful, even when THAT was not true. He was patient and kind. He never once instigated an arguement. We had so much fun together and we laughed together all the time. Not a day went by where I didn't speak to him at least a few times while he was at work. We shared so many interests and loves but none more than our children.

Roly shined the most in his role as a dad to our two beautiful kids, Billy and Molly. He was so totally devoted to them and loved them more than life itself. They brought him so much joy and he did the same for them. He was intimately involved in the details of their lives. He nurtured and did things that most dads would not do. He would bathe the kids and make sure that there were fun things in the tub for them to enjoy, like soap sprinkles. Molly loved it when her dad gave her a "sprinkle bath". He just polished her fingernails for her this past Sunday. He took Billy to baseball games and was involved with his little league team. He played with him, helped him with homework, read to him and loved him so very deeply. He would play silly games like "lumpy bed" that would get the kids giggling like crazy. He would hide the kids under the covers and then say, why is this bed so lumpy? He would pretend to be getting the "lumps" out, all the while tickling the kids as they shouted for more and laughed with glee. He was devestated when our Molly was diagnosed with leukemia but he was strong and always positive that things would be OK. He made getting through her treatment more bearable for us all. He was so proud of both kids. Billy said to tell you that "Daddy was a great man. Daddy would do anything to protect me. Daddy loved me more than other dads love their children".

Roly will be missed in a way that I cannot begin to describe.

Thursday, March 31, 2005 1:04 AM CST

I want to thank you all from the bottom of our broken hearts for the incredible out pouring of love, kindness and support. You are helping us so much. There are no words to express our gratitude during this sad time. If anyone wants to know about the funeral arrangements, you can e-mail me privately and I will let you know.

Thank you all so very much.

Someone so kind left this in our guestbook and I wanted to share it.

�The agony is great and yet I will stand it.
Had I not loved so very much, I would not hurt so much.
But goodness knows, I would not want
To diminish the precious love by one fraction.
I will hurt and I will be grateful for it.
For it bears witness to the depth of our meanings
And for that I will be eternally grateful.�

Love,
Donna

Tuesday, March 29, 2005 10:41 PM CST

Tuesday, March 29, 2005 10:36 PM CST
It is with the heaviest of hearts that I am telling you that my dear, sweet husband died this morning. Roly had a terrible accident on the way to work. We do not know all of the details but we do know that he fell off the subway platform and was struck by a train. Please, please pray for our broken family. Our kids are heartbroken and so am I.

With love,
Donna

Friday, March 25, 2005 10:48 PM CST

MAW TRIP PART 2

Hi again,

Hope this latest entry finds you all doing well. When I last left off, we had arrived safely in Florida after an easy flight and the kids were enthralled with Give Kids the World , the village we stayed at. The first night that we were there, Billy and Molly had the pleasure of being �tucked in� by a 6 foot tall bunny�Miss Merry!! GKTW has its own characters, namely Mayor Clayton (another 6 foot tall bunny) and his wife, Miss Merry! Both kids loved seeing them around the village and were giggling maniacs when Miss Merry showed up to send them off to sleep with her silly antics.

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The next morning, we drove to the Grand Floridian Hotel where Roly�s first cousin, Michael was staying with his family. We were so, so happy to finally meet his beautiful wife, Laurie and their adorable daughter, Baby Julia Grace. Joining us at breakfast were some Disney characters and the kids whipped those autograph books out right away! Breakfast was great and then we all set off to Epcot for the day.

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One of the funniest moments that day was when we boarded the monorail and entered a car with a bunch of college girls who decided to spend their spring break at Disney. Molly just LOVES teenaged and college-aged girls and right away she said, �Hi girls! Can I sit with ya?� They were only too happy to have her join them and off she went on their laps. She chatted with them about make-up, clothes and their choice of nail polish colors. Boy, am I in for it when Molly gets older! Ironically, these girls belong to a sorority whose philanthropic group is �Make-A-Wish�! The girls do fundraising activities to support this great organization so they were only too happy to meet an actual recipient of their good deeds!

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When we arrived at Epcot, we began by exploring the �science� section first. Everything there was awesome but I think both kids loved the Living Seas the best.

Baby Julia got sleepy so Lauri and Mike returned to their hotel while we ventured on to the World Showcase at Epcot. That was actually a great deal of fun. Billy got a �passport� that got stamped at each country and he really enjoyed that activity. Also, Epcot set up these stations called, �Kidcot Fun Stops�, where the kids can engage in an art and crafts activity at each country while collecting stamps and trinkets that attach to a mask. Billy just LOVED that! Molly seemed to enjoy looking at all of the new and interesting sites. She was just so happy to be out and about in warm weather. Her smile could have lit the whole place up.

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We ended our day at Epcot with rides on �Mission Space� and �Test Track�. Boy, were these awesome and fun. The �Mission Space� ride really made you feel as if you were an astronaut flying to Mars. I was nauseous for a good hour after getting off! Test Track was lots of fun too. It was basically a racing car ride that sends you around a track really, really fast. By the end of the day, the rain had arrived and that caused us to cancel our plans to view the fireworks by boat. But to be honest, we were all tired from the busy day and didn�t mind missing out on that too much. We returned to the Grand Floridian where we met up with Mike and Laurie again. They surprised the kids with gifts that were so very generous. They gave Molly a beautiful Sleeping Beauty costume complete with shoes, a crown and a wand so that she would be �outfitted properly� (lol) for the Princess breakfast we scheduled at the Magic Kingdom the next day! Billy was the happy recipient of a great T-Shirt, a baseball hat and a really cool baseball! THANK YOU SO MUCH MIKE, LAURIE and BABY JULIA GRACE!!! We love you and were so happy to spend some nice time with you!

Well, I guess that�s enough for now. Tomorrow we actually have another big day. Molly and I are going to NYC to see a live Dora the Explorer Show at Radio City. We�re going with some friends from the Morgan Center so it promises to be a fun time. Billy and his dad will be going to Billy�s first Little League practice of the season tomorrow. Billy is very excited to once again be on �Coach Tom�s� team.

For those of you celebrating Easter on Sunday, may the holiday be filled with the love and peace of the Risen Lord. I�ll update again very soon!

As always, thanks so much for taking the time to check in on us and for leaving us your kind messages in the guestbook. That means a great deal to us all.

Love,
D,R,B and Princess Molly, who is still on Cloud 9 after her magical vacation!

Wednesday, March 23, 2005 3:50 PM CST

Hello to Everyone!!

Happy Spring to one and all! Even though it is snowing as I type this, I am so happy that spring is here and better weather is just around the corner.

We arrived home from Molly's INCREDIBLE Make-A-Wish trip late on Monday night. I had every intention of updating the web page on Tuesday but as most of you who have a child battling cancer know, the best of plans often go awry. Anyway, Molly had an early appointment at the clinic on Tuesday in order to receive the intrathecal methotrexate that she missed due to low counts just prior to our trip. We arrived at the hospital after hitting awful traffic at about 8:30 am. We didn't end up leaving the clinic until after 5:00 pm. Molly was examined and basically she is doing fine. Her cold is MUCH better and so is her cough. Molly's ANC was still in the mid 600's this week. Technically, it should be at 750 in order to receive the intrathecal chemo. However, since she was already delayed a week, her oncologist didn't want to wait any longer to deliver the medication so Molly underwent the procedure and she did great as usual. While we were at the clinic, we received one unexpected result from a blood test that was conducted. Basically, Molly is showing a deficiency in one of the "factors" (namely, "Factor VII") needed in order for blood to clot efficiently. The deficiency is not severe but it was enough to require Molly to receive her first blood transfusion consisting of "FFP" or "Fresh Frozen Plasma". Her oncologist thinks that this deficiency is of a congenital nature and he is now studying my blood, Roly's blood and he will study Billy's blood as well to make a better determination of what is going on. Luckily, Roly had taken off from work yesterday and so he was able to be at the clinic with us and have his blood drawn. I can't begin to tell you how happy Molly was to have her dad with her there yesterday. But I digress...back to the clotting issue. If I understand this correctly, a deficiency in Factor VII is not a big deal in and of itself. I believe that when Molly has invasive procedures like intrathecal chemo or surgery in the future, the doctors will check her clotting factors and if needed, transfuse her with FFP before the procedure. She also received vincristine (not a drug that we like!) and started back on steroids (decadron) for the next five days. I guess it's time to stock back up on bacon! Overall, Molly looks great and she seems to be feeling pretty well, though tired from the trip as well as the chemo. We go back to the clinic next Tuesday for a re-check of counts and for a check-up. Now on to the Make-A-Wish Trip!

There is truly so much to tell you about this trip, that I simply cannot do it all in one journal entry. So, I will follow the lead of an on-line friend, Kristie, and will tell you all about our trip in installments. This way, you can enjoy some of the 750 pictures that I took!!

So, after much angst about whether or not to go on the trip due to the fact that Molly had a cold, we decided to go forward. We left at 6:30 am for JFK last Tuesday. A limo arrived to pick us up and the kids were thrilled to be riding in that car. When we arrived at the airport, we were greeted by my sister-in-law, Roseanne's, sister-in-law. Her name is Diane and she is a flight attendant for JetBlue, the airline we flew to Florida. I cannot begin to tell you how incredibly kind Diane was to us. She went out of her way to make this trip smooth and easy. She walked us to the head of the check-in line and then to the head of the security line and then on to the lounge where the crew congregates before their flights. She and Roly boarded the plane first and cleaned the seats and tray tables before Molly ever got on the plane. They boarded us first and let both Billy and Molly sit in the cockpit with the pilots. The pilots couldn't have been nicer. Here are some pictures of the kids on the plane:

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Diane actually rode on the plane all the way to Florida with us just to make sure that we were well taken care of. She did this voluntarily and then flew home later in the day. We continue to be blown away by her kindness and generosity. THANK YOU SO MUCH DIANE!!!!!

When we arrived in Florida, we were greeted by volunteers from �Give Kids the World� or �GKTW�, the village that we stayed at. Again, these individuals couldn�t have been nicer. Here is a picture of them with the sign they held up to help us find them:

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Then, the volunteers walked us to the rental car counter, helped us secure our red minivan (much to the delight of Billy) and loaded the luggage into the car for us. We then left for our 20 minute drive to the village.

What can I say about GKTW?? Honestly, there are no words to describe what it is like there. You feel as if you are in a bit of heaven. This village was created in the late 80�s by Henri Landswirth, a survivor of the Holocaust and numerous concentration camps. This man who suffered so much in his life created a resort village for children with terminal and life threatening illnesses. It is a remarkable, magical and unbelievable place staffed primarily by volunteers. There is so much to do there that you don�t even have to leave to go to Disney in order to enjoy your vacation. Among the MANY incredible things there was an ice cream parlor, a beautiful miniature golf course, a movie theater, a remarkable pool and splash park, a magical castle with lots of play areas, a carousel, a train ride and much, much more. Everything for the wish child and their family is absolutely free at GKTW. And the kindness bestowed to not only Molly but all of us too was beyond description. It brought tears to my eyes on more than one occasion. It is so, so special there. Here are a few pictures of this incredible place and the kids enjoying themselves there:

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Both Billy and Molly LOVED, LOVED, LOVED GKTW as much, if not more than visiting the parks. I�ll tell you about the parks and some of the things we did in the next entry, which I will update with very soon.

Thanks so much for checking in on us and for wishing us well with our trip. It was truly incredible.

With much love,
D,R,B and M.

Monday, March 14, 2005 10:36 PM CST

Hello to everyone,

What an incredibly busy day we have had! It all began in the wee hours of the morning. Molly had a clinic appointment at 7:00 am and she was scheduled to begin a new round of chemo. Suffice it to say that after 6.5 hours in the clinic, we returned home and that new round of chemo did not happen. In a nutshell, Molly has a little cold, which she has had for about a week now. She has been coughing a good amount. Part of the chemo she was supposed to get required sedation but the doctors did not want to put Molly "under", for fear that she might choke while coughing. Also, her counts were a bit low (ANC of 646) so they decided to hold off for a week and give her a chance to recover. Normally, this would be no big deal but since we are leaving in about 6.5 hours for Florida, it was actually a big deal. In just a short time, we are scheduled to go to Disney for Molly's MAW trip. We are all so excited to go but I am a bit nervous about taking Molly on the plane with low counts and a cold. After talking to her oncologist and consulting with another doctor, we decided to take our chances and go. The problem with rescheduling (aside from breaking Billy's heart) is that we have no guarantee that at a future date, we would be in any better position. So....that said, please, please, please, and please again...pray that Molly feels well, gets well and is able to fully enjoy this once in a lifetime trip. When we get home, we will update you all with the many details of our trip but since it is almost midnight and I still have some packing to do, I'm going to just say goodnight for now.

I also want to remind everyone that on March 19th at Kasey's in Rockville Centre, a large fundraiser will be taking place. It is known as the St. Baldricks celebration. The mission of the St. Baldrick�s Foundation is to raise awareness and funds to Conquer Kids� Cancer by shaving heads on St. Baldrick's Day. A friend of mine from St. Agnes High School, John Bender, is one of the people who founded this event and he is shaving his head in Molly's honor to raise money to CURE CHILDHOOD CANCER once and for all! Please, if you are feeling generous, make a contribution to this very worthy cause. ONE HUNDRED PERCENT of the money raised goes directly to cancer research! Many thanks to you all and especially to you, John.

Well, I guess that is the news for now! Wishing you all a wonderful week! Also, many thanks to all of you who have taken the time to check in on us and to wish us well on our trip. That means a great deal to us all!

Love,
D,R,B and Miss Molly, soon to be THRILLED to be with the Disney Princesses!

Monday, March 14, 2005 10:36 PM CST

TUESDAY UPDATE - MARCH 7, 2005

Hello again,

I just wanted to give a quick update. Today, we went to the clinic to have Molly's counts checked. Her ANC was STILL on the high side (2036). Ideally, it should be between 750-1000. Once again, the doctors were not at all concerned so for now, we will just take the good counts and hope it helps Molly to fight any potential illnesses that cross her path. That said, please remember to include her in your prayers, that she stays well. Unfortunately, Billy arrived home from school on Friday with a temperature of 103! He's fine now, taking antibiotics though he is coughing and congested a bit too. We so don't want to get sick now so let's hope that Billy's illness was just an isolated "blip" in our plans. As a funny aside, poor Billy MUST have been congested on Friday because when I told him that he had a "post nasal drip" he practically fell over crying and complaining, "No!! Not that!!" Apparently, he heard "Poison Needle Drip"! Kids!! Gotta love them.

Well, I'm off to get some sleep before another hectic day tomorrow. We want to thank all of you who take the time to check in on us and those of you who are kind enough to leave us a note in the guestbook. We so appreciate it.

Take care everyone!!

FRIDAY, March 4, 2005 7:00 AM CST

Hi everyone!

So, it is already March!! Yahoo! Usually the most exciting thing that happens for us in March is celebrating St. Patrick's Day with our Irish friends but this year...well, something VERY EXCITING is about to happen. In less than 2 weeks, we will be leaving for Molly's Make-A-Wish trip to Disney! It is something that we have been looking forward to for so long and now, it is almost here. I am asking all of our religious friends to please, please pray that everyone stays well so that we actually make this trip. For those of you who are not religious, we'll take "positive thoughts", "good vibes" or anything else in that vein that you are willing to send out!

Billy has been reading the guide books for the Disney parks and Universal Studios each night and he just can't wait to do so many things. For the first time, high on his "to do" list is to visit Epcot. Now that he is older, he really enjoys science and he LOVES to collect pressed pennies. He has no pennies from Epcot so the challenge is on to get some new ones. For Molly, it is all about the PRINCESSES! She just can't wait to see them in person. We have a character breakfast booked inside Cinderella's castle one day and I believe that some princesses will be there so that should be very exciting. Billy is hoping that as rumored, Captain Hook and Peter Pan make an appearance as well. All of those girls are just too much for him now! We keep telling him to just wait...in a number of years, he'll be BEGGING us to book him a Princess breakfast!

Part of what we are really looking forward to is staying at a special resort for wish families called Give Kids the World and from what I understand, it is quite magical. Every person who has had the opportunity to stay there raves about the place. It has an ice cream parlor that operates almost all day and night, a mini golf course, a carousel, characters, and much, much more. I think the kids are really going to flip over it.

One surprise treat that came about is that Roly's first cousin, Michael and his wife, Lauri and their daughter, Julia will be at Disney the same time we will be. This is just a coincidence but one we are thrilled about. We have not seen Michael in a couple of years and have not yet had the honor of meeting his family so we are so, so happy that we will get to spend some time together. On the Wednesday of our trip, we plan to meet at the Grand Floridian for a character breakfast with Pooh, Alice in Wonderland and Mary Poppins and then head off to explore one of the parks together. In the evening, we rented a pontoon boat to take us out on a Disney "lake" so we can watch the Magic Kingdom fireworks from the water. It should be just great. On the weekend, the rest of Roly's family will be meeting us so that we can go to the Universal parks together. Roly's parents, his sister and her whole family, and his aunt will all be there. My brother George and his wife are also trying to make arrangements to come by if they can. Both kids are wild with excitement to see their grandparents and their cousins. It is a big treat to be able to have fun together. So, the countdown until we leave continues. It is truly a blessing to be able to partake in this. After all that Molly has been through for the past 15 months, it sure is great to be focused on something so happy. We are really hoping that the trip energizes us to deal with the next 15 months of chemotherapy that she still has to endure.

That said, I was really quite nervous that our trip may have been postponed when I realized that due to "dumb luck" and lousy timing, Molly is due for intrathecal chemo the DAY WE ARE SUPPOSED TO LEAVE for Florida!! Intrathecal chemo is a very important part of Molly's treatment and it involves a spinal tap during which spinal fluid is removed and replaced with chemotherapy. It should not be skipped and it is not something that one likes to postpone. So, what to do? You would think it would be easy to switch the dates around but it is not. Molly takes medication every single day and by doing the procedure a few days early when there was an opening in the schedule, the rest of her chemo schedule would become quite complicated and would have required us to go to a lab in Florida for blood counts during our trip. That is NOT something that I wanted Molly to deal with on her wish trip. After really stressing about this, I asked her oncologist if he would do the procedure one day early, even though he is not scheduled to do procedures that day. Being the doll that he is, he agreed but we also had to get the anesthesiologist to agree as well. Suffice it to say how lucky we are because everyone who needs to be involved with this agreed to alter their schedules and fit Molly in so that she can go on her wish trip with a minimal disruption to her chemo schedule. MANY THANKS TO THE GREAT HEM-ONC TEAM AND ANESTHESIA GROUP AT SCHNEIDER CHILDREN'S HOSPITAL!!

So, what else have we been up to as we look forward to our trip? Well, the winter break ended with more snow. We had a good time during the week that the kids were off from school. We took in a couple of movies, played with some friends, bowled and hung around the house. Billy and I got to see some of our extended family at the christening of our newest cousin, Julia Katherine. Yesterday, we visited the local children's museum and here are some pictures of the kids enjoying themselves there~

Molly doing some interesting pose.

Billy riding the motorcycle!

They really do like each other~at least on the inside of an igloo they do!

One thing that I would like to mention is that there is a large benefit that will be taking place in various locations across the country in the next few weeks. It is known as the St. Baldricks celebration. The mission of the St. Baldrick�s Foundation is to raise awareness and funds to Conquer Kids� Cancer by shaving heads on St. Baldrick's Day.

To quote from their website, this is how the event came about:

On the 3rd of July 1999, John Bender and Enda McDonnell visited their friend Tim Kenny at his Northport home on Long Island, New York. The three played a round of golf together and as often happens after a day of laughs and sunshine, the party continued into the wee hours of July 4th on Tim�s deck. Sometime between midnight and dawn, Tim issued a challenge to John and Enda, reminding them their professions and community had been good to them and it was time to give back. Tim wouldn�t let them go to sleep until they had a plan.

The three - all reinsurance industry executives - decided to turn their industry�s famed St. Patrick�s Day party into a benefit for a good cause. Having known some kids with cancer growing up, they decided to raise some funds for research, but what could they do that would really turn the heads of their industry colleagues!?

Anyone who has met Enda will tell you he�s a dashing fellow � so John said, �Enda, let�s shave your head. Kids lose their hair during cancer treatments so it�s a good fit, and people will pay to see you bald!�

Never one to miss a good opportunity, Enda said, �I will if you will John� and St. Baldrick�s was born. The three planned to raise �$17,000 on the 17th� of March � by recruiting 17 colleagues to each raise $1,000. At the end of the first St. Baldrick�s Day, March 17, 2000, over $104,000 had been raised!!!

Now, one of the most interesting things is that John Bender and I went to St. Agnes High School together in Rockville Centre, New York. An on-line friend asked if it would be OK to have Molly honored as the "boys" shaved their heads this year. Of course, I said yes but I had no idea that the person behind this was actually an old friend who was doing this in honor of my daughter! What a small world! So, John will be shaving his head in honor of Molly...and all to raise funds to CURE CHILDHOOD CANCER ONCE AND FOR ALL!! Unfortunately, we will be on our wish trip our we would be at the event ourselves but all of you who are feeling philanthropic today, please click on the link above and make a donation to this incredibly worthy cause! Let's all support John as he supports Molly and all of those suffering with childhood cancer!

And finally, a word about Miss Molly's health! Thank God, she seems to be doing well overall. She is sniffling a little bit so we are really, really hoping that it goes away and turns out to be nothing. Her ANC and white blood count continue to be a little higher than we would all like so now she is on 125 percent of oral methotrexate along with 125 percent of 6MP, an oral chemo medication. We are hoping that it brings her ANC into that 750-1500 range that we aim for and pray that it is not too much for her body to process and handle. We go back to the clinic on Monday and will once again, have her counts examined.

OK, I think this journal entry is long enough!! Wishing you all peace and good health in the days to come! Also, please don't be a lurker!! We would love it if you would take a couple of moments to sign our guestbook! The entries mean a great deal to us and I plan to print them out and put them in a scrapbook for Molly so that one day, she can see all of the people who checked on her, cared for her and supported her.

Love,
D,R,B and M

Saturday, February 19, 2005 9:35 PM CST

Hello to everyone,

I hope this journal entry finds all of you doing well and enjoying life. Somehow as February plods along, we start getting the "itch" for spring. We had a few days here that were just GORGEOUS but now, the weather has turned cold and wintry again. Sigh....I hate being teased like that and can't wait for warmer, longer days to arrive and remain.

So, what is going on with Miss Molly? Medically, she seems to be feeling pretty well. She had a heavier dose of chemo on Tuesday, as that was the start of the "new month" for her. She received IV Vincristine and started back on steroids for 5 days. The Vincristine causes constipation and pain in Molly's legs but it usually wears off after a week or so. The steroid pulses are not so bad since they are only for 5 days, though Molly's mood, behavior and appetite ARE truly affected by them. Here's an example of the "fun" we sometimes have while on steroids:

On Wednesday, there was a Valentine's Day party at Molly's school, The Morgan Center . It was so cute! Clifford the Big Red Dog came to entertain the kids and Molly just LOVED him. When it was time to leave, another child had taken a red balloon that Molly had her eye on. There were lots of OTHER red balloons still available but Molly wanted the exact one that the other child had at this point. No amount of reasoning or trying to appease Molly was successful so I basically had to carry her out of school, kicking and screaming and crying over a red balloon. The intensity of the fit was unbelievable. Now not on steroids, Molly's would have complained and probably even cried a little over not getting her way but what happened here was definitely out of the norm for her. It makes me just a wee bit nervous that she will be on steroids when we make our Make-A-Wish Trip to Disney in March!! In fact, due to a delay that Molly encountered in her chemo in the past, she is actually scheduled for a spinal tap and IT chemo the day we are supposed to leave for Florida!! Luckily, her oncologist said that we can do that a few days earlier so we don't have to reschedule the trip. Whew!!!!

One thing that has me a drop concerned is Molly's blood counts. During long term maintenance, the doctors like to see the child's "ANC" or absolute neutrophil count in the neighborhood of 750 to 1500. Molly has not visited that neighborhood in a while! She is either way down or way up and mostly, it's been on the "up" side. I don't really understand how a child on so much chemo can still present with "normal" blood counts. Last week, Molly's ANC was about 3800 and the doctor increased her methotrexate. This week, I expected it to be lower, but it was not. It was almost 4000, so now her doctor increased Molly's 6mp, another oral chemo drug that she takes each night. Her platelets and hemoglobin are both fine so that is a relief but I sure wish her ANC would stop traveling and just get back to the neighborhood it's supposed to be in!! Watch, next week she will probably bottom out from the increase in the 6mp. I guess we'll just have to wait and see.

With regard to other happenings in the Guarton household, next week both kids will be on vacation from school for the week. I am actually looking forward to this as much as the kids are. It's nice sometimes to not have the "morning rush" and to enjoy a leisurely breakfast in front of cartoons. We actually had an *exciting* start to our vacation. Yesterday after school let out, I picked up Billy and went to my friend Michele's house so that Molly and Billy could play with her kids. Her son, Brendan, who is 5 also has leukemia and even though they are a few years apart, Billy and Brendan have a great time together. As I pulled into Michele's driveway, I realized that Molly had fallen asleep. I let Billy out of the car and went around to get Molly. Don't ask me why, because I have no good answer, but when I did that, I left the keys in the ignition with the car running. When I got to Molly's door, it was locked. She is always playing with that lock, so I opened the front door and I *thought* I unlocked Molly's door. As I slammed the door shut, I realized that I actually *locked* all of the doors. Yes, that's right, I locked Molly in with the car running. She was sleeping so soundly that no amount of banging on her window or calling her name would wake her. I knew she could have unlocked the door herself if she would have just woken up!! Well, after a little bit, I was worried that it would be too hot in there for her (since the heat was on) so Michele called the fire department who told us to call 911 and before you knew it, 2 police cars were on the scene with a slim jim and tools to get into the car! They unlocked it quickly and I got the "Mother of the Year" award! All the while, Michele is out there with her new digital camera, photographing this comedy of errors. God knows what the cops must have thought! The police officers noticed Brendan's shiny, hairless head and we explained that both Brendan and Molly had leukemia. One of the officers could not have been nicer. When he left, he actually went to his sister's home and got an autographed baseball card of his nephew, a professional ball player for the Orioles for Brendan! How nice was that?! Needless to say, it was quite a crazy start to a "vacation."

Last night, Billy and Roly enjoyed a hockey game at the Nassau Coliseum. Yes, I know that the hockey season has been canceled but this was the farm team for the Islanders against another farm team. The highlight came in the third period when 8 players were in the penalty box at the same time! While the boys were off bonding, I went to my dear friend, MaryAnne's birthday party at a terrific Tex-Mex restaurant. MaryAnne and I have been good friends since 9th grade! A cancer survivor herself, it was a thrill to share in such a special occasion with her. The mango margaritas weren't bad either!

Yesterday was also our nephew, Joseph's 19th birthday!! Joe is staying with us while he goes to college. He is such a great kid and we wish him the happiest of birthdays. He was quite pleasantly surprised when his mom (Roly's sister), Vicky, flew in from Florida to spend a long weekend with him. We are happy to have Vicky in New York too, though it is a bit cold here for her Floridian blood!

Today, thanks to the Robert Di Libero Foundation, we had an amazing and magical day! We went into NYC to see Beauty and the Beast on Broadway!! The Robert Di Libero Foundation is so incredibly generous. They send families living in our area who have a child with cancer out for a "Night on the Town." A limousine picked us up at 12:30 and we were off to the city.

I cannot begin to tell you how excited both kids were to ride in a limousine! Molly was so happy but Billy...well, he could not stop grinning from ear to ear! He told us repeatedly how he felt so "fancy," which made Roly and I really smile. He loved watching the DVD player that was in the car and couldn't believe that there was a little mini-bar, complete with root beer ready for his consumption.

The driver, Rich was as nice as could be. The show was absolutely fabulous! The costumes and scenery were beautiful and the singing was so great too! Molly clapped and laughed throughout and even Billy, who claims he *hates* princesses, was caught smiling quite a bit! One special treat was that one of our favorite nurses from the hem-onc clinic, Christine, was at the show with her husband and daughter. Molly was soooo very happy to see her there! After the show, we walked to Planet Hollywood where we had dinner. That was also really great and then we returned home in the limo, much to Billy and Molly's delight. Molly was so exhausted by the end of the evening that she fell right asleep once we crossed the 59th street bridge.

Well, who knows what the rest of the vacation will bring? You can be sure that around here, it is never dull for long. Wishing all of you the very best in the days to come. I also want to ask you all to please pray for our friend from the Morgan Center, Harrison. Harrison is a very sweet boy who completed his treatment for Wilm's Tumor (a kidney cancer) a number of months ago. Wilm's Tumor has a very high cure rate (above 90 percent). Harrison had his port removed and was on his way back to a normal life when a CT scan showed three cancerous nodules on his lung. Now, he must have his port reinserted next week and begin again on an even more aggressive chemotherapy protocol along with radiation treatment. It is truly devastating for all of us to hear this news. Please pray that his family is able to remain strong throughout this trying time and please pray for a complete and total recovery for little Harrison. That's the thing with cancer, no matter what the statistics say, one really never knows and it is so difficult for all of us battling this beast to find a sense of peace and security in our day to day lives.

With much love,
D,R,B and M.

Wednesday, February 9, 2005 11:16 PM CST

Hi to everyone,
So, it's February already huh? How can that be? It feels like we're just recuperating from Christmas and already, Billy has signed me up to make cupcakes for his Valentine's Day bake sale at school!

Everyone in the Guarton household is doing pretty well. Our little "angel" (please read that with some sarcasm folks) is thankfully doing rather well. She has reached that stage where she insists on doing everything on her own. We have nicknamed her "Little Miss Independence"...and boy, is she doing a job on her mother. Oh, you would like an example of how "independence" (normally thought of as a good thing) can rear its ugly head? Sure, why don't I just tell you about our morning today. Molly has been suffering from nosebleeds on and off for quite some time now. I don't think it has much to do with the leukemia but rather, I think she has some sinus issues. Anyway, this morning she got one of her nosebleeds. Now, she has been told to call for me or Roly when this happens but Little Miss Independence decided she could take care of this all on her own. So, while she bled on her nightgown, my sheets and pillow cases, the duvet cover, her favorite teddy bear and the white rug in my bedroom, she made her way to the bathroom to get a tissue. As she got the tissue, she knocked the entire box into the toilet bowl, along with the February edition of Family Fun Magazine, a scrapbooking catalogue, the flyer with the new fashions from Lane Bryant (yes, I'm fat) and a "Chicken Soup for the Soul" book. (Yes, this is way too much reading material for the bathroom but heck, it's the only place I *sometimes* get some peace, quiet and privacy)! Anyway, Little Miss Independence decided that rather than call her mom who would probably not be thrilled with what was going on in the bathroom, she would retrieve these items and try to make it look as if nothing had happened. She was not too successful with this. Needless to say, there was toilet water (thankfully, not yet peed in toilet water) all over the floor and most other places. At this point, the oh so attentive mom (AKA...ME) arrived on the scene and Molly announced "I have a bloody nose." Oh really, I hadn't noticed!!! After getting the nosebleed stopped, mopping and disinfecting the bathroom with Lysol, throwing out my reading material, trying to get the blood out of the rug with peroxide, stripping the bed, and changing and washing the sheets, it was time to get Little Miss Independence ready for school. Did she agree to wear the ADORABLE outfit I bought her from Gymboree, the one with the bubble gum machines on the leggings with the matching socks and matching shirt with rhinestones?? No, not at all. "I want to wear a DRESS"!! That was all I heard. Then I was told that if I made her wear pants, she would "scream at cha, and scream at cha, and scream at cha!". Then she proceeded to scream at me to demonstrate. When she was done, she asked, "Now, did I scare ya?" Oh yeah, I'm scared. More than you know. So, worn out from the bathroom battle, I let her wear a dress and off I went downstairs to make some coffee. Some battles are just not worth fighting. Not a minute later, down the steps she comes crying, "I can't get it out of my nose!" WHAT NOW???? Apparently, Little Miss Independence stuck a tissue piece up her nose and couldn't get it out. I didn't see any tissue there but called the doctor who suggested that we try to "flush" her nose with a saline nasal spray that I had. This was...oh, so much fun! How I only wish you all could have been there with me to enjoy and savor the moment! So, the flushing and protesting began. No tissue came out but her nose did begin to bleed again and I can only assume that she swallowed the tissue piece or perhaps it was never really stuck up there in the first place. Who knows. I guess if her nose stinks and looks funky tomorrow, we'll be at the ENT. Anyway, after all of this we went to school. Fun morning, right?

As for the medical front, Molly is basically doing well. Her counts remain very up and down. She goes from being neutropenic to having a neutrophil count in the thousands in just one week. Though this concerns me, the doctor doesn't seem particularly concerned. He said that as long as her counts drop, which they do, then we are OK and that some kids are just like this, very up and down. Last week, Molly's ANC was about 750 and it caused her chemo to be reduced to a 50 percent dose of 6mp, though a full dose of oral methotrexate. This week, her ANC was 3800 so Molly was placed back on a full dose of 6mp and she was actually increased on her methotrexate to 5.5 pills (an increase of a half of a pill). She seems to be feeling well for the most part and we are very grateful for that.

Billy is getting more and more excited as each day goes by about our Make a Wish trip to Disney in March. Actually, we are ALL very excited about it. He reads the guidebook about the theme parks all of the time. Today, he took a trip to a local planetarium and he loved it. He is really looking forward to seeing Epcot and Roly and I are too. I think even Molly will enjoy it though no doubt, the Magic Kingdom will be her favorite.

The weather here was really nice for a few days but a noreaster is on its way to us so we are getting ready for some more snow. Yuck!

We want to send a special hello to our good friend, Caroline, who lives in Rochester, New York. Caroline and her family are planning a visit in about 2 weeks and we are so excited to have them come and see us. Caroline has been a bit under the weather so we hope that she is feeling better very soon.

Well, that's the news for now folks. Goodnight!

With love,
D, R, B and none other than, "Little Miss Independence"

PS. Click on the link below to see a photo slide show of Molly during her treatment.

Sunday, January 30, 2005 8:33 PM CST

Hello to everyone,

I am happy to say that everyone here is doing well. As Molly continues on her journey to conquer leukemia, we find ourselves adjusting to yet another "new" way of life. A year ago, our lives revolved 100 percent around managing Molly's illness. She was undergoing some very tough chemo and to say that she was feeling lousy would be an understatement. There were numerous hospital stays, fevers and hard times. We are so thankful and happy that a year later, things have improved SO MUCH. Molly, now on the "long-term maintenance (LTM)" phase of her treatment protocol, is handling things much better. Although she still takes chemotherapy each day by mouth, it is less intense and less toxic than in the past. Twice every 12 weeks, Molly undergoes anesthesia and receives chemotherapy in her spinal fluid. A spinal tap is performed and the fluid that is removed is replaced with chemo. This is known as "intrathecal" chemotherapy and the drug she receives is called methotrexate. Once each month, Molly receives chemo as well as a prophylactic antibiotic by IV through her mediport. She also takes steroids for the first 5 days of each month. We go to the clinic at least once each week for a checkup, blood counts and medications. Some weeks, we are there more than once for various procedures and blood counts. It is still a lot to manage but the big difference now is that Molly has adjusted to all of this and has incorporated it as part of her daily life. While in some ways it is so sad to think that a 3-year-old thinks a weekly trip to the hospital is "normal," on the other hand, it is a blessing because she doesn't question it or fight it...she just accepts it as "the way things are." After receiving her medications and undergoing various procedures, Molly has some days where she hurts and feels poorly. For example, for a week or so after receiving a drug called "vincristine" (AKA "mean Christine" to the little ones), Molly's legs in specific and her body in general aches and hurts. She has difficulty going up and down the stairs and I know she is in pain then. She gets very constipated from this drug so we then have that issue to deal with. Still though, it is better than where we were at a year ago.

Although our lives still do revolve very much around conquering leukemia, slowly we are adding back into our lives the things we gave up a year ago. Now, I am working again (part-time) and while it is truly great, it takes time and effort and energy to perform well at work. Since Molly is feeling better, she has been attending school pretty regularly at the Morgan Center. She LOVES her ballet class on Thursdays and she has been enjoying her first real "play dates" with Kiera, the sister of a little boy, Brendan who is also battling leukemia. We met Brendan and his family at LIJ over the summer and have been so lucky to become close friends with them as we take this unwanted journey together. I have been able to take Billy to his after school activities instead of relying on the kindness of friends to do it for me. I am now able to cook again and at least make an effort towards keeping the house clean and together. Life is slowly a bit more like it used to be yet it is different because of Molly's illness and guess in some ways, it will always be different. Sometimes I wonder if I will ever be able to view a fever or bruises as "no big deal" again. I guess time will only tell that. Though I of course find myself so happy that things are better, I am also very tired more days than not. There is a lot to manage and only a limited number of hours in each day in which to manage these things. I am in the process of trying to prioritize my "to do" list and I'm trying to find a healthy balance between taking care of all of the people and things in my life that need "taking care of," including myself. Wish me luck on that one!

This past week, Molly received her monthly dose of pentamidine (the IV antibiotic I mentioned earlier). She was seen by our best guy at the hospital, her oncologist, Dr. Shende and had her blood counts done. They came back a little "funky" for lack of a better word but no panic buttons have been pushed and there is no cause for concern now. Basically, Molly's white count was up a little past 7.0 while her hemoglobin was down to 10.3 from 12.8 a week ago. The higher than desired white count was probably due to the steroids Molly had been on the week before but the doctor doesn't have any great explanation for the drop in Molly's hemoglobin. He plans to draw her blood from a peripheral vein in her arm this week rather than rely on a finger stick or blood drawn from her port. We hope things will be more in line with what they should be and we'll know that on Tuesday when we go back to the clinic. Just in case her hemoglobin drops further, our good friend, "Dr. Sheila" went and donated blood for Molly in case she should need it. THANK YOU SO MUCH SHEILA!! I can't emphasize enough how important it is to donate blood regularly. It is so crucial to kids like Molly fighting cancer.

To bring you up to speed on Billy and Roly, both "boys" are doing fine. Billy is really enjoying the snow because he loves the cold weather activities such as sledding and ice skating. Today, he skated at an outdoor rink with his cousins, Katie, Emily and Sophia. It was all about how fast he could get around the rink, regardless of the number of times that he fell! He had a lot of fun and we thank his Uncle Van and Aunt Ro for inviting him to join them. He is reading the "Magic Tree House" books and he is really enjoying them. In science, he is learning about the different states of matter and he finds that very interesting. He is getting VERY EXCITED for our Make-A-Wish trip to Disney in March.

Roly was in Texas last week for business and boy, am I happy to have him back home! Though it was warmer in TX, he is also happy to be back in NY. He is busy with work and the kids keep him hopping too. The commute to and from NYC has not been a fun one for him lately, as the cold weather has the trains all messed up. Last night, we were able to go out to dinner with friends and then into the city to see "La Cage Aux Folles" on Broadway. That was great, though we both agreed that we think we liked the movie, The Birdcage, even better! The train ride home last night was interesting. But, that story is for another time. Suffice it to say that some of the other passengers had way tooooo much to drink before boarding the 11:05 to Babylon. Anyway, that's all the news for now.

We hope all is well with everyone by you. Be well and stay warm!

Love,
D,R,B and M.

Wednesday, January 19, 2005 10:17 PM CST

Hello to all,

Once again I find myself wondering where the time goes. Sometimes, I just don't know! First of all, we are all doing well. I started working in Baldwin at the Middle School again...per diem doing testing. That has actually been really great. I didn't think I missed being a "grown-up" so much but I did! It's been truly wonderful to see my co-workers and friends and to use my brain a bit for something other than information related to hemotology and oncology! I am also working more in my private practice so I find myself a bit busy again. But, it is a "good" busy.

So, let's bring you all up to speed on "Miss Molly". When last we left, I needed to bring her back to the clinic on Friday for a re-check of her counts. Well, Friday turned out to be the day from HELL! Though everything is fine with Molly, Murphy's Law was in full operation that day. The day began with torrential, cold rain. First thing that morning, I had to bring my car into the dealer to have a recall taken care of. I was supposed to be able to wait for it but remember, Murphy's law was operating so I had to leave the car there for a while. After getting a ride to my friend Michele's house and taking the car seat out of my car in the horrible rain and putting it into her car, we all went to the Morgan Center, where Molly had a great time. After class, in the continuing rain, Michele drove me to the dealer to get my car. It was so much fun (*NOT*) to take the car seat out of Michele's car and put it back into mine. Then, Molly and I drove to the clinic for what should have been quick finger stick and check of her counts.

Though the clinic was not too crowded, they were very short-staffed on Friday and the wait was long. Molly's finger stick results were all off and presented a concern to both her doctor and myself. It turns out that for some reason, something was wrong with the machine that actually does the counts but suffice it to say that I was WORRIED when I saw the (incorrect) numbers I was given. On that sheet, Molly's hemoglobin dropped more than 3 points in a few days, and her whites were up. Even though you don't want your mind to go there, you can't help but to fear relapse. Her doctor told us that he saw no abnormal cells and he seemed pretty confident that there might be a problem with the machine and he ordered a re-test of the counts through a peripheral blood draw from Molly's arm. He also told us that she could have Parvo virus or a hemolytic anemia, but he assured us that these things would be highly unlikely and that he believed that the counts were wrong. Still, as a parent, your mind races and you worry. After a long wait, the blood was drawn (Molly was NOT happy about that) and the counts were much better. Apparently, there WAS a problem with that machine!

Since we were stuck at the clinic for more than 4 hours Friday afternoon, I was unable to pick Billy up from school as I had planned. Thank goodness for my mom who managed to get him from the after-school program. When we finally got to the dark parking lot, I noticed that the parking attendant (who is a hell of a nice guy and did me the favor of putting my car in the lot so that Molly and I wouldn't get soaked) left the headlights on. Murphy's law in full force now. The car was dead. Great. So back to the hospital where I approached security and told them that I had a problem. The security officer told me, indeed, I had a problem because he said that he is not "allowed" to jump a car. WHAT??!! He said that I could walk through the children's hospital to the main hospital and go to the security office, leave my license, get a set of jumper cables and approach strangers in the dark parking lot and ask for a jump. Was he OUT OF HIS MIND???? So, as you can guess, I was NOT happy at this point and poor Molly had had enough already! My dad was about 45 minutes away due to the traffic but finally a kind soul took pity on us and jumped the car. It turns out that she is the Director of Chld Life for the hospital and she said she would be looking into what the security officer told me about not being "allowed" to give me a jump.

By this point, all I wanted to do was GO HOME! Molly and I braved the traffic and she fell asleep before we even hit the parkway. When I got home, I decided to have a glass of red wine and wouldn't you know, Murphy followed me home! The cork went IN the bottle instead of coming out, causing a big splash of red wine on my new pale green sweater. At that point, I just went to bed!

By the time Saturday came, I was better and so was Molly. I took Billy to the mall and we had a "mommy-Billy" afternoon. I noticed that Roly called the cell phone and left a message that I should hurry home because Molly decided to do something she had never done before. She took her diaper off and decided to play with her poop, smushing it right in the rug!! He was NOT HAPPY. (But was he *watching* her carefully?? I think not). Like a good wife, I took Billy to the Disney store and bought him whatever he wanted. I knew I had to kill at least an hour before I "noticed" the call and went home. Thankfully by the time we got home, Roly had bathed Molly, and steam cleaned the rug. Oh, he also got the magic markers off the wall that Molly wrote on in her room, after Roly put her in time-out. Think she's trying to tell us something? That evening, Roly and I went to our friends' home for their annual wine and cheese tasting party. Neither of us drank much but it was great to get out!

On Sunday, we all went to the movies to see "Racing Stripes" with some friends. It was cute, though gross in some parts. The kind of gross that makes kids squeal with delight...you know, jokes about poop, farts, etc... Then on Monday, I did some errands and we hung out at home, lit a fire in the fireplace and got ready for the new week.

Yesterday, Molly and I returned to the clinic bright and early for her appointment. She received intrathecal (spinal) chemo, medication in her port (vincristine) and started back on 5 days of steroids. Better go buy some bacon! She did great, though her legs are already hurting her from the vincristine. I see her struggling on the stairs and that is so sad. Still, her disposition is happy and she looks good. She spent the day with Roly today and I took advantage of him being home and ran into Baldwin to do some more work. Tomorrow it's off to ballet and life goes on....

Wishing you all a great week!

Love,
D,R,B and the Divine Miss M.

Wednesday, January 12, 2005 10:05 PM CST

Update: Well, we are having a bit of a better week. Molly saw her oncologist, Dr. Shende on Monday. Her counts were "OK", though not great so we will return on Friday for a re-check. Basically, her ANC was 850, which is not terrible but Molly has intrathecal (spinal) chemo (as well as a bunch of other IV and oral meds) scheduled for Tuesday of next week and it is important for her counts to be better before she undergoes the spinal and receives more IV chemotherapy. Hopefully, her ANC will be on the rise but if it is still on the low side on Friday, perhaps the doctor will alter her medication schedule in hopes of having better counts for Tuesday. Molly has been feeling much better since her fever episode last week and she did return to school at the Morgan Center. That is always so much fun. I managed to get to Baldwin 2 times this week to work thanks to the help of some very good friends! Thank you Joy and Michelle for watching Molly so I could go be a grown-up for a little while! Tomorrow we have ballet and Friday school and the clinic. We'll let you know how it all goes!

Saturday, January 8, 2005 8:49 PM CST
Hello to everyone,

What a week, what a week and what a week! Can you guess that we have been a little crazy this week? We were so looking forward to having some "normalcy" as the new year began. But for those of you out there that have a child with cancer, you know that "normal" is a very loosely defined term.

When Monday rolled around, Billy and Molly both returned to school. Though it was difficult to get up in the morning, Billy was actually happy to get on the bus and see his friends. That was probably owing in large part to the fact that I finally caved and allowed him to bring his old game boy on the bus so the "big boys" could show him the secrets of Pokemon...Ruby Red is the game and right now, it's all about getting to the next level. Billy was warned repeatedly that if that game boy came out of his back pack or was even discussed during school hours, that was it for the year. So far, he has had such great self-control and a respect for the rules that his teacher didn't even know he had it until I asked her how he was doing with it. We are pretty proud of him, considering how hard it is for Billy to stay away from the game during school. He's beginning to mature and that is such a good thing for a parent to see.

As for Miss Molly, she too was VERY happy to return to the Morgan Center. I was pretty happy to return too, as I missed seeing the other moms and their kids. Everyone seems to be doing pretty well.

I was supposed to return to work in Baldwin on Tuesday and this is where the craziness of our week began. Due to a mix up in the district, they weren't ready for me last week, which is actually a good thing. My dad was going to watch Molly while I was at work but he wasn't feeling well. To make a very long story short, he ended up in the ER three times this week with excruciating pain in his lower back. The docs thought he had kidney stones but they couldn't find any on the X-rays. Pain medication was of little use. By the third trip to the ER, dad had a rash over the painful area and it turns out he has shingles. He was in contact with Molly, which is not the best thing since she is immunocompromised but there is nothing we can do about it now. After consulting with her onc and an infectious disease doctor, we have been assured that Molly is really not at-risk because she did not come in direct contact with the rash, as it is covered by clothing. Still though, until the rash heals, my dad will have to stay away from her just to be extra safe.

My dad was not the only one who had the *pleasure* of a late night ER trip. I guess I said one too many times how well Molly is doing and boom, she got a fever on Thursday night. I thought it might be coming, as she didn't eat a drop all day on Thursday and complained of a tummy ache. She actually asked for Zofran by name! Of course, I didn't give her any because her stomache pain was not from chemo and probably would not have helped. By 1 am (actually by that time, it was Friday morning), Molly and I were in the ER. She was SO AMAZINGLY GOOD that I can't even believe it myself. No crying or screaming. Just a mild protest of "I just can't do this anymore!" I know how she feels. She had her port accessed (and the nurse did a great job too!) and blood was drawn from both the port and her arm to be cultured. She was given IV antibiotics and since her counts were OK, we were able to go home at about 5:30 am. I used to pull "all-nighters" all of the time in college and graduate school. I must really be getting old because they just wear me out now! Molly seems to be feeling much better and hasn't had any fever since then. She continues on IV antiobiotics (ceftriaxone) at home and this is given by her home care nurse (also known as her mom). It's not hard to do and thankfully, she cooperates so that makes it even easier. This morning as I gave her medication, she was half-asleep and opened one eye to see what I was doing. She said sleepily, "Are you flushing my line"? I replied that I was and she said, "OK" and was back off to sleep. Amazing what a 3-year-old can learn.

So, we return to the doctor on Monday to see how Molly's counts are and for her onc to check her out. Her hemoglobin dropped one full point in 2 days so I hope that it is back on the rise, since Molly has been doing really well with that lately. Hopefully, we will get the green light to return to school. As for me, unless I can find someone other than my dad to stay with Molly, I don't think I will be able to go back to Baldwin next week. At least I got to see some friends from Baldwin earlier today at a Bat Mitzvah. The Bat Mitzvah girl happens to be named Molly too and her parents put on a terrific party! It's too bad that Roly was unable to go, as he stayed home with the kids but I was very happy to get out for a little bit and see some people I haven't seen for quite a while.

Well, that's the news from this week! I hope that you all have a calmer and healthier week than we have had here!

Happy New Year to all!

Love,
D,R,B and M.

Saturday, January 1, 2005 8:52 PM CST

Happy 2005 to Everyone!!

It's funny...I keep saying that it's 2006 because that is the year that Molly will complete her treatment for ALL but alas, we have to plow through 2005 first...and we will! We hope you all had a great start to the new year. We certainly did. Much better than last year, that is for sure. This year, we ALL went to our friend Linda's home and got together with some of our friends and neighbors. The New Year's Eve tradition used to be a progressive dinner that began with appetizers at one home, the main course at another and dessert at a third but since Molly got sick, things changed. Last year, we didn't go at all and this year, we opted out of having guests at our home because there are lots of kids and we were a little concerned about bringing potential germs into the house. So, Linda was kind enough to host the whole evening. I made (OK, so I bought) a bunch of appetizers and we ordered some heroes from a great deli for dinner. Linda made her usual assortment of delectable desserts including chocolate mousse and cheesecake. Just what I needed to eat to start the year off on the "right" foot! Of course, eating those things is not really in line with my annual resolution to lose some of those extra pounds and get into shape! Anyway, we watched the ball drop and Molly was awake and FULL of energy all night long. It was nice to be able to do something "normal" and to all be together.

Today, we hung around in PJ's for a while and enjoyed some of our Christmas gifts. Then we went to my mom's house to celebrate my dad's and Billy's "Name Day." I am of Greek origin and according to our tradition, you celebrate the day of the Saint that you were named for. (My dad is Bill too.) For those Greeks named Bill, your Name Day is January 1st, which is St. Basil's feast day. We ate a traditional Greek dinner which consisted of lamb and all of the trimmings. We also celebrated my niece, Sophia's 3rd birthday. So, it was a fun day and now we are home. Roly and I are so tired and at 10:15 PM we are still pleading with the kids to go to bed! School begins again on Monday and boy, are they "off" schedule.

Next week, I will be returning on a per diem basis to my school psychology job to do some testing. I am really looking forward to doing something professional but I'm anxious too. I hope that I can manage it all and hope that Molly continues to do as well as she's been doing so that I can actually work a little bit. While I'm in Baldwin, my dad will be with Molly.

Molly's next clinic visit is on Tuesday. She seems to be feeling well overall and her energy level is astounding sometimes. There really must be a lot of people praying for her because truly, she does not act or look like a sick child and that is a blessing. However, she IS still a sick child and it is tempting to forget that and relax with all of the precautions we take to protect her. The challenge is on to continue to keep her as safe as possible from illness and to help her continue to fight this fight in the great manner that she has been doing.

Wishing you all a very Happy New Year. May 2005 be a year filled with many blessings for us all. I wish you all good health, peace and happiness.

With love,
D,R,B and M.

Tuesday, December 28, 2004 8:24 PM CST

Hello to everyone,

Well, the big freeze is on here in New York! Today, it was COLD and it actually snowed a little bit in the evening. Despite the weather, we have been really enjoying the holiday season this year. Thankfully, Molly has been feeling well, even following the intrathecal and IV chemotherapy she received last week. The children are truly thrilled to have their grandparents from Florida here with them and we are too. It is really nice to be together during the holidays.

On Christmas Eve, we gathered at my brother's house for the usual Christmas Eve celebration. The food was great, the company terrific and Santa even made an appearance much to the delight of the children. The older kids reported that it wasn't the "real" Santa but they knew that it was one of his special helpers. As for Molly and the little ones, they were thrilled to see the big guy in the red suit arrive! We stayed at my brother's house until it was late and we were exhausted. Needless to say, we were happy to discover that the kids were as tired as we were and slept in until 9:00 am Christmas morning. Billy was up first to discover the gifts under the tree and quickly woke Molly to join him in exploring the many wrapped packages waiting for them. We all were up within a few minutes and the unwrapping began! Molly was so happy to discover Sarafina (the cat from the Barbie's Princess and the Pauper movie) and a real make-up set waiting for her! She also was the proud recipient of a Disney Princess Vanity and we can't forget the Magic Hair Fairytale Dora doll too! We can't forget a Disney Princess Computer and some dress up clothes! Billy was so happy to get some new video games and a special gift from his grandparents called Xavix, which is a video game system that plays virtual sports. Billy got a bowling cartridge and a baseball cartridge too. It was the hit of the day. Everyone bowled and batted all day long and it was a blast. The game is still going strong a few days later. Billy was also thrilled to get a "Game Boy Player," which allows him to play his handheld Game Boy games on the television. Very cool. Santa even brought Roly and me a few things, including some Saturday Night Live DVDs and a few books I've been eyeing! After the gifts were exchanged, I cooked and my family came over to join us for dinner and some more celebrating. It was a really nice day, though we missed my youngest brother who was in Florida with my sister-in-law's family this year. Hopefully, George and Crystal will join us next year.

Since Christmas, we have been visiting with family and friends and have been catching up with those that we have missed seeing over the past year. Molly's counts have been good due to the steroids she was on so we were able to do a few more things this year than last. Tonight, we went out to the Milleridge Inn, a really good, quaint, colonial restaurant to celebrate my mother-in-law's birthday. Molly loved being in a restaurant and she ate up a storm. She told us that she wanted "shrimp and meatballs" but instead ate some French onion soup, salad with Ranch dressing, mozzerella sticks, chicken fingers, french fries, broccoli and carrots and ice cream!! I guess the decadron is still in her system somewhat!

When we went to the clinic today, the nurse measured and weighed Molly. She has grown almost a 1/2 inch in the last month and gain a little over a pound! That is actually good news. Even more, her counts were good (ANC=3516, Hg=11.7, and Platelets were 308), so no complaints here. Molly also got her monthly IV prophylactic antibiotic, Pentamidine this week. We have to go back to the clinic next week on Tuesday. So, lets hope that things continue along on this good trend and that we get to the New Year without incident.

Love,
D,R,B and M.

Wednesday, December 22, 2004 8:08 AM CST

Merry Christmas and Happy Holidays to each and every one of you!

I'm always amazed by the "persistence" and continuity of time. No matter what else is happening, time steadily marches on. Sometimes we want to stop it in its tracks to cherish a moment or to give us some "more" of it and other times we want to hurry it along and we wish it away. But no matter what WE want, time subscribes to its own set of rules and we cannot influence it.

This past year, "time" and I have been at odds on many occasions. So often, I looked at Molly and I saw her in pain, or uncomfortable, or so sick, or even scared and I would just wish the time away. Other occasions, I saw her so joyous and vivacious that I wanted to freeze the moment so I could experience it over and over and over again. But my desires did not prevail in these situations and time kept moving forward.

And now I find myself a little over a year into Molly's treatment with Christmas just days away wishing again to have some control over time. I find myself thinking I wish I had "more time to just play with the kids without concern for daily chores or holiday preparations." Or "more time to get these gifts wrapped." And "more time to bake cookies." How about, "more time to write or call all of those who have been so wonderful to us this past year." Let's not forget, "more time to rest and recharge." But STILL, time refuses to yield to my wishes and like everyone else, it is only giving me 24 hours per day to use as I see fit.

So...how will I make use of this finite allotment granted to me? Well, I am consciously choosing to let some things go in order to achieve others. If I have learned nothing else this past year, I have learned that nothing, truly nothing, matters except for the health and well being of those you love, especially your children. And that is not something that we have a guarantee about, despite the fact that we might be nice, altruistic, loving people because bad things happen to those who don't deserve it and life is simply "not fair." Each day of life is a gift, precious and sacred and no matter what is happening during that day, we need to cherish the moments because they are fleeting. We cannot stop and freeze them nor can we "fast forward" them away. Instead, we simply must "be" in the moment, experiencing it and living it. So for me, I will be with my kids and loved ones, consciously appreciating the moments and enjoying them, even when those moments are not composed of things that I want to happen like when the kids are arguing with one another or messing up the house that was just cleaned. This is because these moments, like all moments, have value. I know many people from the hospital that would give their right arm to have a moment to hear their child argue with a sibling but this Christmas won't, because their child will be too ill to do so or in the hospital or at home with our Heavenly Father.

So, I guess my Christmas wish for all of you is to stop and take a moment to consciously think about how precious life is and all of the gifts you already have but perhaps don't acknowledge each day. To think about how some of your annoyances would be a dream come true for others. To understand that no gift under the tree could compare to what most of us already have. To remember that this Christmas season is not about "the stuff," or the cookies, or the beautiful wrapping or decorating but it is truly about the birth of the Savior and the promise His birth gives to us all.

Merry Christmas to each and every one of you and may God shower His blessings upon you. Please remember in prayer this holiday season all of those families who are struggling with sick children and especially a young boy named Matthew who just relapsed almost a year after completing 3 years of treatment for leukemia. And if you want to do something truly life saving, please make an appointment to donate blood and platelets as the blood banks always run low during the holidays.

With much love,
Donna, Roly, Billy and Molly

PS I guess it would be good to give you all the update on Miss Molly too!! :) Molly and I headed to the clinic bright and early yesterday morning so that she could undergo anesthesia and receive chemotherapy in her spinal fluid. This is called "intrathecal" chemotherapy. Molly handled it like the champ that she is and as soon as her eyes opened, she was asking for something to eat and drink. She also received vincristine, a nasty medication, in her port. Some kids we know call this drug, "mean christine" because it causes leg and joint pain along with some significant constipation. Molly is now back on steroids for 5 days so the "Eat and Scream" is on in our household. She should hit the steroid peak right about on Christmas so it will be an interesting Christmas morning in our house. I wonder what will take precedence for Molly, opening her gifts or eating the pound and a half of bacon that she will be demanding? Time will tell! Molly's counts were all good thankfully and her hemoglobin is basically within normal range (a little over 13 which is amazing!) Molly is feeling pretty well now and she is eagerly anticipating Santa's arrival. So is Billy for that matter! Again, we wish you all the best this holiday season and always! LIVESTRONG!

Wednesday, December 15, 2004 6:49 AM CST

Hello to all,

Can you believe that Christmas and the New Year are just a couple of weeks away??? I still feel like summer just ended and yet I find myself getting ready to welcome another new year.

Here in Long Island, the weather has finally turned COLD!! The type of cold that stings your cheeks and leaves your lips chapped. But it is nice too and we are hoping for just a very small coating of snow to really brighten up the holiday season. Molly did not get to enjoy the snow last year and she is really eager to get out there this year and build her first snowman! We will let you all know when that happens!

"Grandma and Grandpa from Florida" arrived safely last night much to the delight of Billy and Molly. Molly told her grandma, "I'm so happy that you are home!" Both kids are just thrilled to have their grandparents here and I'm sure there will be lots of fun to be had in the next couple of weeks.

As for the medical update, we went to the clinic yesterday and Molly's counts are great. She went from an ANC of 300 on Friday to 1900 on Tuesday. That might worry me a little if it was not for the fact that her hemoglobin also jumped up to a little over 13.0 (the highest since BEFORE she was diagnosed) and her platelets were also extra high, about 475,000. So, it seems that her marrow is working well and that is excellent. She returned to 100hemotherapy this week and next week she is scheduled to undergo anesthesia for a spinal tap and chemo in her spinal fluid. She will also begin steroids next week (along with other medications) so I bet she'll be eating up a storm by Christmas.

So, we continue to go about our daily routines while trying to finish getting ready for Christmas. The gifts are basically bought but nothing is wrapped yet. I think this weekend we will be tackling that task. There is a gingerbread house that is just waiting to be built and cookies that need to be mixed and baked. Molly and Billy are both anxious to help with those tasks.

I will update soon.

With lots of love,
D,R,B and M.

Friday, December 10, 2004 10:35 PM CST

Update

Hi there,
Just a quick note to say that we returned to the clinic today to have Molly's counts re-checked. Unfortunately, her ANC was still low, in fact 200 points lower than on Tuesday so Molly continues to be off chemo for now. That is of course a disappointment to us so say a prayer that her numbers recover soon and that she stays fever free or we'll end up "you know where". Tonight was Billy's Holiday Concert at school. He sang his heart out as he always does. Since Molly is neutropenic, she did not join us. How I wish she could have been there but instead, she had a great time playing with two of her favorite girls, Jenna and Melanie. Thank God for the Rosenbergs who always come through with just the right advice and support.

I also wanted to say thank you to everyone who visits Molly's page and checks up on her and all of us. We so appreciate it. It is always nice to hear from you guys so don't be shy about leaving a note in her guestbook!

Well, that's the news for now. As the used to say on SNL, "Goodnight and have a pleasant tomorrow".

Sending love to you all.

Tuesday, December 7, 2004 11:08 PM CST

Hello to everyone,

Who can believe another week has gone by? Sometimes I just don't know where the time goes! This week was packed with not only our regular activities like going to the clinic, the Morgan Center and dance class but also, two amazing and very special holiday parties!!

The first party that took place on Saturday was truly a once in a lifetime experience. Our entire family along with other families from Schneider Children's Hospital (and some of our favorite staff members from the hospital) took a fantasy flight to none other but the NORTH POLE!! We arrived at the US Airways Shuttle at LaGuardia Airport on Saturday and actually received boarding passes for our flight. Through security, to the gate and on an actual airplane! However, instead of being greeted by your typical flight attendants, we were met by Santa's Elves and his special helpers!! It was so incredibly festive and you could literally FEEL the excitement in the air. Molly could barely contain her joy and Billy was all smiles from ear to ear! Once on the plane, we fastened our seatbelts and lowered our window shades. After all, the flight plan to the North Pole is a secret and Santa can't let that out to just anyone! We taxied around, sang Christmas carols and it really felt like we were flying! As we got closer to the North Pole, it got kind of chilly. When we finally deplaned, guess who greeted us? You're right!! It was Santa himself!! We exited into a winter wonderland of fun! There was a rather large banjo band playing all kinds of Christmas music and they sounded terrific. A huge bounce house was such a hit with the kids, especially Billy. A story teller/clown was there and she was fabulous. There was even a professional photographer who took family pictures along with pictures of the event. Each child got to sit on Santa's lap and boy, did they get a few "early" Christmas gifts! There was so much food and the atmosphere was just one of pure joy and excitement. For us, a big treat was to see our friend Zoe, who we miss so much!! She was unable to participate on the flight due to some low counts, etc., and she wasn't even able to stay for the whole party but we did get to visit briefly with her. Boy, I miss seeing her mom too! Jen, you looked great and I'm so sorry that we didn't get to spend more time with you. This was a day to remember! The only thing that could have made it any better would have been if the guests of honor did not have cancer. As much as we enjoyed it all, it is bittersweet knowing that the reason you have this wonderful opportunity is because your child has a life-threatening illness.

After all of the fun we had at the North Pole, Molly just HAD to nap! Boy, was she worn out. So, we went home to let her rest and as we watched the evening news, there was our little starlet, once again gracing us with her presence on TV. She was interviewed by NBC news and I was on television as well. Molly was really adorable, as she told the reporter that she hoped Santa would bring her a Barbie Princess toy. When Molly woke from her nap, we went to our friends', the Fredericks' home to celebrate their daughter, Shannon's birthday. Molly loves playing with Shannon as well as the Rosenberg girls (who were also there), Jenna and "Melody" - who is really "Melanie" but not to Molly. Even though he was the only boy there, Billy had fun too. We keep telling him that when he is a little older, he's not going to mind one bit being the only boy among a group of adorable girls!

So, as if all of the excitement on Saturday wasn't enough, there was yet another party to go to on Sunday at the hospital. This one was put together by a wonderful organization, the Sarah Grace Foundation. This group was founded by Sarah's family after she lost her battle with high risk ALL, the same type of cancer Molly has. While Molly's chances of being cured are certainly excellent, the loss of Sarah Grace is the type of occurrence that nags at a mother's heart, knowing that not every child wins the battle. I am amazed by this family's ability to turn their ever present pain into joy for those who are "fighting the fight." At the party on Sunday, there was karaoke, face painting, more pizza and chocolate than should be legal and a visit by the big guy himself, Mr. Santa Clause. Of course, there were more gifts and more squeals of delight. It was a wonderful party and everyone seemed to have a great time.

Today, we went back to the clinic to find out that Molly is neutropenic, meaning that her neutrophil count (infection fighting ability) is too low to withstand chemo right now. Presently, the doctor took her off all chemo and we have to return to the clinic on Friday for another check of her counts. She will miss her weekly dose of methotrexate but if her counts recover on Friday, Molly will resume taking 6MP, another chemo pill. Usually when she is off chemo, her counts rebound kind of quickly so we'll see what happens this time. Overall, Molly seems to be feeling pretty well. She had a little friend, Kira over today and she really enjoyed having a playdate.

Well, I guess that is the news for now. In this busy season of holiday shopping and preparing, remember to take the time to tell those you love how you feel. Life is precious...cherish it. One last thing I will leave you with, if you haven't done so for a while, consider donating blood during the next few weeks. The blood banks tend to run low during the holidays and this is so necessary for children like Molly to survive. What a wonderful gift you can give...life through a blood donation. Livestrong!

With much love,
D,R,B and M.

Tuesday, November 30, 2004 10:54 PM CST

Happy Tuesday to everyone,

Just wanted to give you all an update on how Molly's doing. After our pre-Thanksgiving trip to the ER, Molly had yet another nosebleed (this one was small though) on the way into NYC to see the Macy's Thanksgiving Day Parade. So, for those of you who asked if we made it in, we did!! It was really so much fun too. Molly and Billy really enjoyed it, as did their cousins, Katie and Emily. Billy was so happy to have his birthday start off in such an exciting way. Although we were very tired by the time we got home, we managed to pull ourselves together and go to my brother's house for the holiday. This was a really nice holiday since my other brother who lives in Florida was able to come to NY with his wife.

The next day, instead of eating leftovers, my dad took us all out to dinner at a local Hibachi restaurant. Everyone was together and we all really enjoyed watching the chef cook right at our table. He was a very funny chef and did all kinds of tricks. Molly laughed her head off. I don't think she's laughed that much in a long while. Billy showed off some of his karate moves and impressed the chef, though he scared us a bit!!

Over the weekend, we decorated our house for the holidays. Though we are not quite done yet, the tree is up and a majority of the decorations are out to enjoy. If the weather cooperates, maybe Roly will be able to get the lights up outside this weekend. Molly loves to look at the Christmas tree. We have quite a few ornaments that move or make music and she really enjoys playing with and looking at these.

We also spoke this weekend about those things that we are grateful for, since Thanksgiving is such a natural time to voice those things that we don't always say aloud. I will share with you what we said.

Me: So Molly, what do you say thank you for? What makes you so happy?

Molly: "Mommy (aw, schucks!), Grandpa, Yiaya, Barney, Alice from Wonderland, and Santa.

Me: What about Daddy & Billy and Grandma & Grandpa from Florida?

Molly: Oh yeah, them too (said with a big smile and enthusiasm).

Me: Anything else?

Molly: Nope, that's all.

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Me: How about you Billy, what are you thankful for?

Billy: For my gameboy, that I'm healthy, that I'm alive, that I have a family that protects me.

Me: That's very nice, anything else that you want to add?

Billy: I'm thankful for you Mom (aw, schucks again)! For Molly, for Daddy, my cousins and everyone else. I'm thankful that I don't have what Molly has and I'm thankful that Molly is alive. Oh yeah, I'm thankful for all of my toys too.

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Me: How about you Daddy?

Roly: I'm thankful for Billy and Molly and you. For one year of treatment under our belts, that everybody is happy and I'm thankful for all of our family members and friends and coworkers who have helped us through this year.

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And me?

I'm thankful each and every day, even when my kids are driving me directly to the insane asylum, that we are all together, making it through Molly's illness, not as individuals but as a family. That family includes not only the four of us, but our extended families and friends that carry us through and lift us up in prayer and give us more support than one could hope for. For the people who leave messages of encouragement in our guestbook here on this webpage, for those who send beautiful, thoughtful cards, who drop us e-mails, leave phone messages, bring a meal, offer to baby-sit, run to the store for us, think about us, and the list goes on. I'm thankful that I have made some great new friends (though I wish I met them under different circumstances)! and that some other relationships have been renewed and strengthened. I'm thankful that we live in the year 2004 and not thirty years ago, when Molly would have most likely not made it through this disease. I'm thankful for the researchers and the people who fund the research to find a CURE for childhood cancers. I'm thankful to the doctors, nurses, social workers, child life people, and other hospital/clinic staff for taking such good care of our daughter. I'm thankful that our little girl is all "spit and fire." Though she can be one tough cookie, it is that spirit and resolve that helps her cope so beautifully with all that she has to endure. I'm thankful that she is exactly who she is and I am hopeful that better days lie ahead, not only for us but for all of you and our nation and the world as a whole.

May God bless you all and may you all know that we love you and are very grateful for all that you do for us.

With much love,
D,R,B and M.

Thursday, November 25, 2004 1:20 AM CST

Happy Thanksgiving to everyone,

As I write this journal entry, it is very early Thanksgiving morning ... 2:30 am EST to be exact! We arrived home from the emergency room not too long ago. Earlier this evening, Molly had a severe nosebleed that we could not get under control. Her nose bled for about 45 minutes and she went through an entire box of tissues within the first 10 minutes! Whenever Molly gets a nosebleed, it really upsets her so the crying and screaming didn't help things too much. Anyway, after speaking with the hem-onc fellow on call, we were advised to take Molly to the ER to get checked out. By the time we got to the hospital, of course her nose had just about stopped bleeding. During the car ride over, she passed a HUGE clot through her nose (sorry to be gross) and then the bleeding slowed down alot, eventually stopping a short time after. Whew! I guess that was our first thing to be thankful for on this Thanksgiving. In fact, despite the way this holiday has started, we DO have many things to be thankful for today.

1. Both my friend's son and my brother Van were able to come to stay with Billy so that we did not have to take him to the ER with us.

2. Molly's blood counts were solid and good, even with a bad nosebleed.

3. She did NOT have to have her mediport accessed in the ER. That is a huge thing we are grateful for.

4. The ER wasn't too busy.

5. All of the nurses and doctors were so kind to Molly. Many of them remembered her from previous visits and just stopped in to see her because they think she is so cute. (They should only see her at home! In fact, they should see her during a nosebleed to see how cute she really is!!)

6. Because all was well, we were able to come home, to sleep in our own beds, if only for a few hours before attempting to go to NYC to see the Macy's Thanksgiving Day parade tomorrow.

7. Thanksgiving day this year is the same day as Billy's 8th birthday so we have much more celebrating ahead of us!! HAPPY BIRTHDAY BILLY!!!!

I have much more to say on the topic of gratitude, but it will have to wait because right now, I am grateful that I have a nice, warm bed waiting for me upstairs. So until I get a chance to update some more.....

HAPPY THANKSGIVING!! Enjoy the day with your friends and family members and savor each delicious moment!

Love,
D,R,B and M.

Thursday, November 18, 2004 11:33 PM CST

Hello to everyone,

Although it's only Thursday, it feels like we've had a very long week already. On Tuesday, I took Molly back to the clinic for her weekly blood test and a checkup. Her counts were still high, which meant that she was able to continue on her current dosage of oral chemotherapy. The doctors are still trying to regulate the "concoction" of medications Molly has to take so that her counts level off instead of going up very high and then bottoming out a short time later. Since her counts were good, she was in good shape to remove those pesky beads that she put in her ear a couple of weeks ago. But, unfortunately for us, all of the attending ENTs were out of the hospital doing resident interviews. Sooooooo.....back to the hospital today for another try. At least today, we were successful. Molly was very, very good for the procedure, which involved lubricating her ear with colace, a gastrointestinal medication and then removing the beads with a long instrument while a nurse and I held Molly. She really didn't put up much of a struggle and the beads were out in a matter of seconds. One would think that after all of this, Molly would not go anywhere near her ear with a foreign object again. However, Molly is...well...let's say, "an independent thinker." After the whole ordeal I saw her putting a shoe from Polly Pockets into yes, you guessed it, her ear!! Oh, I could have screamed. I got the shoe out but then ran her over to my good friend Sheila's house, since Sheila is a pediatrician and had an otoscope at home. Thankfully, there were no other objects in her ears but boy, did she give me a scare. This kid is really too much sometimes!

While we were at the ENT, he examined Molly's nose too and she still (or again) has some sinusitis. Because she's not so great at blowing her nose, any mucus that builds up sits in her sinus cavities and gets infected. The sinus condition may also be contributing to Molly's higher than usual counts so after the ENT consulted with her primary oncologist, it was decided that Molly would do 12 days of an IV antibiotic, ceftriaxone followed by a couple of weeks of oral antibiotics to once and for all try to clear this thing up. Molly got her first dose of medication at the hospital today and tomorrow, the home nurse will come again to review with me how to administer the remaining doses. I think I remember...flush the line, prime the antibiotic, hook her up until the medication is gone, flush the line again, and hep-lock her. It is really not that big of a deal but Molly stays "accessed" during this time, which means that her needle remains in her chest in her mediport and is covered with a bandage. We have to be careful that she is not being too rough with Billy or wild so that the needle remains in place. The dressing has to get changed every 3 days and the needle has to be replaced once each week. Kind of a pain but there is no choice with this. Bathing is a real challenge too during this time period because the needle area cannot get wet. So, we're in for a fun couple of weeks.

On a serious and sad note, another child from our clinic lost the battle with leukemia this past week and earned his angel wings. This sweet, sweet boy named Corey was Molly's roommate for one week while we were inpatient a while back. He was truly a lovely child and he got into my heart. I feel like another piece of it has been broken at the loss of this boy. Please pray for him and his family and for all of the children afflicted with cancer, that they may remain strong and conquer their illnesses.

With love,
D,R,B and M, future maker of hearing aids or other devices that go in the ear???

Saturday, November 13, 2004 11:30 pm CST

UPDATE:

Hi to everyone,

Just a quick update to say that I brought Molly back to the clinic on Friday and her counts rebounded quite a bit. Her ANC went from 263 on Tuesday to over 1700 on Friday, so she is back on oral chemotherapy. We will go back to the clinic on Tuesday and if her counts remain high, maybe those little purple beads that are stuck in Molly's ear will FINALLY get removed!! (We have come to the conclusion that she must have put them in there thinking that she was putting "earrings" in.)

Since Molly's counts were good, we were able to attend a special showing of "The Incredibles" at a local movie theater. The theater was rented out by the Luke Neuhedel Foundation (www.lukefund.org) so that children undergoing chemotherapy for cancer and their families could go do something "normal" and fun while not being surrounded by too many other kids. It was a great morning and both Molly and Billy really loved the movie. (Roly and I thought it was fun too!)

Well, tomorrow we will be doing typical Sunday activities...Sunday school, Billy will be working on a book report after his soccer game and we will be continuing to prepare for Billy's 8th Birthday bash to take place on November 20th. It's a "Sponge Bob Square Pants" movie party!! So, counting the days down until then.

Hope you're all enjoying your weekend.

Wednesday November 10, 2004 8:32 am CST

Hello to everyone,

Well, today is one year from diagnosis for our family. On November 10, 2003, our lives changed in an instant. For those of you who don�t know our story, here is a little recap. In October and November of 2003, Molly wasn�t �herself�. She was running fevers on and off and seemed tired. She developed pneumonia and was on antibiotics and nebulizer treatments. I had just returned to my school psychology job in Baldwin full-time and Molly was in day care for the first time. Part of me kept saying that she was getting sick from being exposed to all of the kids in the daycare and part of me was sure that something was very wrong. On a Thursday, I spoke to one of our pediatricians and we agreed that a blood test was in order. Perhaps Molly had mono. The doctor was not overly concerned at that point and I kept trying to push my fears out of my head. I decided to do the blood work on Saturday, since I was off from work. I had kind of convinced myself at this point that Molly was feeling better and that it probably wasn�t necessary but I decided to go ahead with the test anyway because I didn�t want to have to leave work again during the week to do it in case she �really� needed it.

On Monday, November 10th, at about 6:00 pm, I was on the phone with my friend Linda making plans for Tuesday, which was Veteran�s Day. We were off from school and were contemplating a movie with the kids. The call waiting went off and it was Dr. �Bob� (one of our pediatricians). The conversation went something like this, �Uh, Donna�.This is Dr. Bob. We have Molly�s blood test results�. �Oh, and does she have mono�? �Well, her white blood count is very high and you�re going to have to go to the hospital and have it checked out�. �Oh, I see, do you think she has leukemia�? �Well, it�s possible�. �Please just tell me the truth�could it be anything other than leukemia�? �No, we don�t think so. You need to get to the emergency room right away�. And then the world came crashing down. A hysterical phone call to my dear friend Sheila (and also a pediatrician in the group we use) and we were off to Schneider Children�s Hospital where we remained inpatient for the next 13 days. Sheila joined us at the ER and stayed with us until we were in a room and settled down. She is nothing short of absolutely amazing.

Those initial days were consumed with trying to learn as much as we could in such a short period of time. Meetings with doctors and social workers. Second opinions. Researching the internet. Reading through books. Talking with other families. Just writing about it makes me feel dizzy. If it wasn�t for our amazing co-workers, friends and family members, we would never have gotten through it. Everyone rallied by our sides and we have been so blessed by the support given to us. Our parents have been steadfast, by our sides each step of the way. And our friends and family members�.what can we say? I�m not going to list them by name because there are just too many people to mention and I don�t want to leave anyone out. Each and every one of them has been so incredible and supportive. I have to mention though my co-workers in Baldwin, who have been unbelievable. They have done SO MUCH. They even sent dinner to our home 2-3 times each week from Molly�s diagnosis until the end of the school year in June!! As for our friends, I also have to mention the Rosenbergs, whose own child, Jenna, is an ALL survivor. They have been there for us from day 1. I still remember leaving the Rosenbergs the message that Molly had leukemia on their answering machine. And while I was hoping for a quick phone call back, I got Joe in person right there by our sides. The man left his job to come and be with us. He gave us the parent perspective and hope that we needed so desperately and we will be forever in his debt for that. (By the way, Joe is not feeling so great himself right now and is actually in the hospital. Any prayers sent his way would be really appreciated!)

Over the course of the last year, our beautiful little girl has endured so much. Much, much more than any child should ever have to endure. She has been the recipient of so many finger sticks, spinal taps, bone marrow aspirations, blood transfusions, chemotherapy administrations and the list could go on. She has had 9 inpatient stays for fevers and neutropenia. She has had more than her share of late night trips to the ER. She has managed it all so well. Since she was diagnosed, she has received chemotherapy almost every single day, and she will continue to do so for another year and a half. She has been sick from the chemo with nausea, vomiting, low blood counts, hair loss, fatigue, diarrhea and more but none of it has really slowed her down too much. In some important ways, she is simply a three-year-old who loves all of the things three-year olds love. She especially loves school at the Morgan Center, a special preschool for children who have cancer. What a blessing to have this program near us. Molly has benefited so much from going to school and being able to play with other children. As a result, her social skills are developing along with her cognitive, language and motor skills. And her mommy has benefited too by meeting so many other parents who are taking this journey as well. Their insight, support and knowledge have been invaluable. Ironically, as a direct result of this nightmare, we have all made some terrific new friends that I think we will be friends with for a long time to come.

In addition to the people we have met in person, I have made a lot of new friends via the internet. God bless the internet! There is an on-line support group for families who have a child diagnosed with ALL. It is called ALL-Kids, and the members are a true life line. When something is upsetting or scary, I can put a post up and have a ton of responses in such a short time from people who are also in our shoes. It has really been a great resource for me. As a result of the internet, Molly has had so many people praying for her and wishing her well that it really overwhelms me. She has received cards and gifts from people we don�t even know personally. What touches me so deeply are not the things that have been sent, but that people cared so much for a child that they did not even know. That they went out of their way to do something totally unselfish and altruistic without asking for one thing back. We live in a time when it is easy to think that people are not inherently good but rather petty and selfish. In this post 9-11 era that we live, it is easy to be scared and cynical. But this whole experience has taught us all that really, the world is full of good, loving people who care and want to make a difference. You just have to look for them and they are right in front of you. The fundraiser that was held to benefit Molly in August is a true example of the kindness of others. This was put together by the children of my parents� friends and it was unbelievable. About 400 people attended and we were absolutely blown away by the outpouring of love, generosity, kindness and support we received. And we made new friends that we have come cherish too in the people who put this together for us.

So, what can I say about this year? Well, our lives are profoundly different, I imagine much in the way that many people�s lives became profoundly different after 9-11. Molly�s diagnosis has literally been life-changing for all of us. While we were always appreciative of what we had, the depth of our appreciation has grown to a level that we didn�t know we were capable of experiencing. The stress of the year has been tough at times but ultimately, I do think that we are a closer family as a result. Molly has become a strong, resilient, confident little girl who I believe will go on to do something very important with her life. Her big brother Billy has grown up a lot too over the course of the year. He too has had to deal with so much but for the most part, I think he has emerged a stronger child himself. He is very good to Molly and he worries about her but they still enjoy a �normal� sibling relationship with all of its ups and downs. The year hasn�t been easy for Roly, who works in the city and wishes he could be home more. But his job has been good to him and he has been able to be with us at home when we really need him there. And as for me, well let�s say that I am now coloring my hair more regularly to get rid of the gray that has emerged! My day to day life has changed a great deal but I am so grateful that I have a job that has allowed me to take a leave of absence in order to care for Molly. There is nothing more important to me than being able to care for her and be with her through all of this. She is truly my hero and she inspires me each day to try to be a better person than I was the day before.

Well, I guess that�s it for now. As for our �regular update�, we took Molly to the clinic yesterday to find out that her counts have finally come down, too much so. She is neutropenic with an ANC of 263 and is off chemo for the week. Oh, and she still has two purple, plastic beads stuck inside her ear. They don�t want to try to remove them until the ANC comes up for fear of an infection. We�ll recheck the counts on Friday and see how she is doing then.

Thank you all for being who you are and for being there for us. If you are so inclined and would like to leave us a message in Molly�s guestbook that would be great.

Love,
D,R,B and M.

Wednesday, November 3, 2004 7:04 AM CST

Hello to everyone,

The picture on the home page is from Halloween. For those of you not familiar with every single Disney princess, Molly is dressed as Mulan, one of her favorite characters. She had a great time trick-or-treating with her brother and all of the neighborhood kids. I can't help but to reflect back to last year at Halloween. We didn't know that she had leukemia at that point but she was sick and didn't really enjoy the day. She had trouble walking and was tired and cranky. What a change this year! When I look at the pictures from last year and compare them to now, she looks so different. This Halloween, Molly really loved being part of the group. She pooped out before Billy, but then again, almost everyone else pooped out before Billy, who I think loves Halloween almost as much as Christmas and his birthday. After all, FREE CANDY and so much of it! Billy was dressed as Dracula and he looked great too.

Over the course of the week, there were lots of festivities building up to Halloween. In Molly's school, the Morgan Center, there was an adorable Halloween party on Friday. The kids "hunted" for pumpkins and decorated them, trick-or-treated to the moms that were lined up along a long hallway, did arts and crafts, and ate way too much junk! On Saturday, there was a PHENOMENAL Halloween party at Billy's school put together by the Parent Teacher Association. The parents at Westbury Friends went all out and they did an amazing job decorating and transforming the school into a magical place. There was so much for the children to do from romp through a homemade, not too scary but very fun Haunted House, play on a bouncer/maze/obstacle course that you might find at a carnival, play "Tombstone Musical Chairs", compete in sack races and mummy wrapping contests and the list could go on. Billy's party ended with the traditional costume parade through the cemetery that adjoins the school property. For some reason the kids just love to do that. Since Molly's counts were good, she was able to attend and she had a ball there too.

We went to the clinic yesterday (Tuesday) and spent the whole day there. There was a scheduling mix up and Molly's 10 am appointment didn't come to completion until about 4 PM. That was not fun. Her counts were still on the high side so her oncologist increased her chemotherapy by 25 percent for one drug and that will be reassessed next week. She received her monthly dose of prophylactic IV antibiotic. Despite the long day, she handled like she always does, like a brave little trooper. One minor concern is that Molly has been having nosebleeds on an almost daily basis. Her doctor at Schneider's wants her to see an ENT so we will be doing that this Friday.

I guess that is the news for now. Hope you all enjoy the autumn weather and the week to come.

Love,
D,R,Dracula and Mulan

Saturday, October 23, 2004 11:16 PM CDT

Hi to everyone,

The past week or so has gone by so quickly...my apologies for not updating you all sooner. First, be assured that we are all doing fine. Life is slowly...ever so slowly...becoming somewhat more "normal," and for us, normal means busy, busy and busy.

Molly was a little under the weather this week but it was nothing serious. We think that she had a sinus infection. When we went to the clinic on Tuesday, even though she was back on 100 percent chemo, her counts were still up and they were suggestive of some type of infection brewing. Given the lovely shade of green coming from her nose in conjunction with her blood test results, we came to the astounding conclusion that she was likely suffering from a sinus infection. Now a sinus infection is really no big deal but in Molly's case, the doctor decided to treat her with IV antibiotics rather than oral medication. That was partly because Molly has not been eating so well (probably because the post nasal drip has her nauseated!), and augmentin would really hurt her stomach without food. At Molly's age of 3, there really is no convincing her of eating because she "should." There is only, "I will do what I want to do and you can't make me do otherwise." Gotta love 3-year-olds. Anyway, she received her first dose of ceftriaxone on Tuesday at the clinic. The nurses left the needle in her port (which is how Molly gets IV fluids, blood products and medications) and a home care nurse came to teach me how to give the remaining medication at home. So, let's review what I learned this week. I learned how to prime an antibiotic, how to flush a line with saline solution, how to hook up and administer IV antibiotics, and how to "flush and hep-lock" the line when the medication was finished. Oh yeah, and I also learned how to knit. I realize that is not at all related to caring for Molly but it does fall under the topic of things I learned this week and it is late so bear with me. Anyway...by Friday, Molly seemed better so I took her back to the clinic for another blood test and checkup to see if we could stop the antibiotics at this point. The doctor agreed that Molly looked better and even though her counts were STILL on the high side, he decided to stop the antibiotics and see how she does. We are scheduled to go back to the clinic on Tuesday, at which point Molly will receive yet another dose of intrathecal (spinal) chemo along with a bunch of other medications.

Although Molly had 2 clinic trips and IV meds this week, she didn't let it slow her down one bit. Last weekend, we stopped by the Bellmore Family Street Fair and that was very nice. We let Molly go on the Merry-go-round and she really enjoyed that. During the week, we went to the Morgan Center and Molly had so much fun as usual. Today, we went to this amazing party thrown by the "Luke Neuhedel Foundation" (www.lukefund.org). This foundation was started by a family whose child, Luke, died from a hepatoblastoma (liver cancer). In Luke's honor and memory, the family has created an organization whose mission it is to bring smiles to the faces of children afflicted with cancer. October was Luke's birthday month so each October, Luke's family throws a HUGE, BEAUTIFUL birthday bash for all of the local children suffering from cancer. At this party, there were many costumed characters and Molly must have hugged each of them at least 100 times. There was a DJ, games like musical chairs, arts and crafts, food and so much more. All of the children (including their siblings) received birthday gifts and goodie bags like none I have ever seen before. They were filled with all kinds of amazing treats and delights. Molly could not stop dancing from the moment she arrived. She had the many volunteers who attended the event in stitches all day with her dance moves and incredible energy and joy for life. Billy had a great time there as well and after the party, another family came over to visit and play for a little bit. Later on, our good friends, the Rosenbergs, arrived with pizza so today was just nonstop fun.

Well, I guess that is the news for now. Wishing you all a wonderful week.

With much love,
D,R,B and M.

UPDATE 10/27/04

Today our sweet, little 3 year old Molly began back on steroids following IT MTX and a bunch of other meds. She did well at the hospital and seems to feeling fine now. Tonight, she once AGAIN bit her poor brother on the nipple. Yes, you read that right...on the nipple!! How you ask? Why you ask? Good questions. Not ones that I can readily answer. It appears that he was playing his game boy laying down on the rug and she wasn't getting enough attention so she bit him through his shirt. She drew blood and her brother is back on Augmentin for 5 days. I had a brief psychotic reaction and took all of her toys that were out and put them away for the night. I put her in her room for a time-out. I even slapped her hand (which is very out of character for me). I yelled that I was going to ship her and her brother out to China. All of this phased her very little as she screamed at me to give her a banana.

When Roly got home, she told him immediately, "mommy slapped me and now I have to eat Chinese food"! We explained everything to her again about not biting, not hitting, etc...At bedtime, I said I was sorry for yelling and slapping her hand and packing up her toys and then asked, "But you know why I did that, right?" She answered so sincerely, "Yes, because you are a very bad mother"! And then she grinned.

I am in big trouble with this one. Just love steroids.

Thursday, October 14, 2004 10:53 PM CDT

Hello to everyone,

Today was a rainy, cold, dreary day on Long Island and yet, it was a day filled with many blessings and feelings of gratitude. To begin, Molly and I started our day off as we have done for the past few Thursdays, by going to her dance class. This class is taught by a very special instructor who has gone out of her way to try to make the experience of dance lessons as enjoyable and safe as possible for Molly. This woman, Eileen, wipes everything down before Molly comes in to the class and has kept the student count quite low so that Molly wouldn't be exposed to too many kids at the same time in the same room. Just watching the smile on Molly's face as she participates in the class is priceless. I am so grateful that she has a place to go that she can enjoy herself so much. And I am so grateful that she feels well enough to do it! She looks so wonderful now. Her color is so much better, her energy level is good, her hair has grown back (quite beautifully too I might add!)and she outwardly appears to be like all of the other kids her age. Even though I know that she is not like everyone else, at least to others, she is just a cute, spunky little girl.

As the day wore on, we got excited about participating in the "Light the Night" walk in Suffolk county, Long Island. We were determined to have fun, rain or shine. Roly came home after lunch and we were all able to share in this outing together. Even our nephew Joseph (who is attending college in New York and is staying with us) came to the walk. We were so thankful to find out that it was NOT raining in Suffolk! Overcast, yes but no hard rain like we had at home. The atmosphere at the walk was festive and it was great to see so many people out to support the Leukemia/Lymphoma Society. We heard that this year, Long Island alone raised about 500,000 dollars! How great is that? Being at the walk was terrific but even more wonderful was meeting a new friend, Shannon, and her beautiful family who invited us to walk on their team. Shannon is an extraordinary person. Although she has a friend with lymphoma, she has luckily not had anyone in her immediate family suffer from a blood cancer. Still, she is so compassionate that she felt the need to help others who are suffering with these cancers and diseases. She spent so much of her time organizing her team and raising lots of money (and she has three children under the age of 10...and two of them are under the age of 2!!). Shannon even gave Molly the most special gift -- a hand made "basket" (really, an incredibly beautifully decorated paint can) that was filled with all types of girly-girl gifts from a feather boa, to a magic wand, to body lotion, to bath products and more! In fact, other people from Shannon's team also sent gifts to Molly! I am continually amazed by the generosity of others. These people are constant reminders of the goodness of people and we are so lucky that so many good people have come to support us as we continue on this journey.

As for our own little princess, she is STILL on cloud 9 after meeting none other than Cinderella. Every day, she makes sure to tell someone that she met Cinderella and then she excitedly shares her account of that magical moment. It is great to see her so happy about that!

As for the medical update, we went to the clinic on Tuesday and Molly's counts were all high, which was a little strange since they had been so low on Friday. There was no good explanation for the counts to be up the way they were but the doctor did not seem concerned and told us that it "just happens" sometimes. Molly was started back on 100 percent chemo and we decided to give her the dose she missed on Friday on Tuesday. So, now we will be on a Tuesday schedule at the clinic. The doctor does not want to see her again until next Tuesday so we'll see what the counts are doing then.

Well, I guess that's all the news for now. Hoping that you all are well.

With much love,
D,R,B and M.

Friday, October 8, 2004 10:17 PM CDT

Hello all,

Another week down and counting! Once again, the time really went by quickly. Molly seems to be feeling pretty well. Always a good thing. Her appetite has been down but her weight is fine so no-one is pushing any panic buttons, though it bothers me when she eats only one pop tart all day long. At least she is drinking "Boost," a nutritional supplement type of drink. Billy drinks them too because he is so thin and is also a poor eater. Between the two kids, I think we should buy stock in the manufacturers company because it's bound to go up!!

For those of you who asked, yes we did endure a couple of hours with the big purple dinosaur (AKA Barney) at Radio City on Sunday. Molly was wild with excitement and glee! She just couldn't believe it. She was screaming, "It's HIM," like he was Elvis at the height of his career. The seats were awesome -- really close to the stage and Molly thoroughly enjoyed herself. Roly and I thoroughly enjoyed ourselves too because it was so much fun to watch Molly's face during the show. What a treat to be able to do something wonderful for and with our little girl.

During the week, Molly went to school at the Morgan Center. This place is just so unbelievable and fun for the kids. To have a preschool dedicated to children with cancer is really special and we are so lucky that Molly is able to attend it. It is so great for me too because I have met a lot of other parents who share many of my thoughts and feelings surrounding this whole ordeal. The support is invaluable.

Speaking of support....we have been blessed by so much support and in so many ways. Recently, I "met" on-line a woman named Shannon who has organized a team for the Light the Night walk to take place on Thursday, 10/14/04 in Islandia, New York. This walk occurs all over the country to raise money for the Leukemia/Lymphoma Society and to promote awareness regarding leukemia, lymphoma and related diseases. Shannon is walking in honor of a little girl named Allie who lost her battle with AML (a different form of leukemia from what Molly has). The team is called Honoring Allie (www.honoringallie.com) and the walk should be just terrific. Shannon has invited our family to join on their team and has been so kind to us in offering much support. We are very excited to join in this very important event. We want to thank Shannon and all of her "angels" for thinking of Molly, for praying for her recovery and for leaving us so many kind notes of support and encouragement in her guest book. (And a big thank you to all of you who have stopped by, checked up on us or left us notes of support!)

Today, Molly and I went back to the clinic. I was not surprised to find out that her counts are low -- in fact too low to continue on chemo right now. That is most likely from the intrathecal chemo she received two weeks ago. It takes about this long for her marrow to get suppressed. Her ANC was a little over 600, which is not too bad but her protocol calls for holding the chemo if the ANC is below 750. So, she gets a break from the medication and we get a break from having to wake her up every night around 11 PM to chew her 6MP (chemo pill) which must be taken on an empty stomach and with no dairy products. Instead of going to the clinic on Friday only next week, now we have to go on Tuesday too. So much for getting a haircut on Tuesday!

Tomorrow we have something very exciting planned for Molly. A long story made short is that Roly arranged for her to have a "private" meeting with Cinderella at the new Disney Store that opened in NYC on 5th Ave. There is a "meet and greet" in the afternoon but it wouldn't be smart to leave her in the middle of a tightly packed group of kids, waiting on line to see her favorite princess. So, the store manager said to bring Molly in early to meet Cinderella. We haven't told her yet but we think she is going to FLIP!! There's not too much that excites this child as much as the Disney Princesses and meeting one in person will be like a dream come true. Even though her counts aren't the greatest, her oncologist said he thought it would be OK to go so we will be taking our chances. Say a prayer that we don't regret doing that later!

OK, be well and enjoy your weekend! For my teacher friends, it's a 3 day weekend -- wahoo!!

Love to you all,
D,R,B and Princess Molly

UPDATE 10/9/04

Well, you can tell by the new picture on Molly's home page, we did in fact make it into Manhattan and Molly got her private meeting with none other than....CINDERELLA!! The child was absolutely star struck! I fully expected her to be jumping up and down but she was almost frozen when she saw her idol. The people at the new "World of Disney Store" in NYC were VERY KIND to Molly. They led her into a special room where the "meet and greets" take place. Our family was the only family in there at the time. Then, they positioned Molly in front of a stage. The curtains opened and there she was in all of her royal splendor, Cinderella herself. It was actually kind of magical, even for us grown-ups! Molly had a grin on her face from ear to ear. She hugged Cinderella and just couldn't take her eyes off her. The employees gave Molly a cute pink crown and Cinderella crowned her, making her a true Princess in her own right. What fun! When we got home and watched the short video that we recorded, Molly then jumped up and down and screamed with delight, "I just LOVE her." I know that she is going to have the best time on her "Make a Wish" trip to Disney in March. Well, hope you all had as much fun today as we did!

Love,
R,D,B and Cinderella's new best friend, Princess Molly

Friday, October 1, 2004 10:34 PM CDT

Hello to all,

I can't believe the weekend is upon us. It seems like this week kind of flew by. Oh well, we are always happy to see a Saturday and Sunday.

This week, Molly got to return to the Morgan Center. Although she stayed home on Monday because she hadn't been feeling well over the weekend, she got to go to school on Wednesday and Friday. Wednesday, she was still a bit crazed from the steroids but by Friday, the "Big Eat and Scream" (a term used by our friend, Julianna Banana's dad) seemed to be over -- for this month. Molly had so much fun playing with her classmates and they are such an adorable group. While the kids played, the parents congregated outside of the class and drank too much coffee while comparing notes on our kids' treatment, side effects, etc. Every so often, one of the parents would peek in the window of the class and watch as the kids played and behaved as typical preschoolers. It's never long before the rest of the parents are up doing the same, beaming with pride over not only their child but every other child in the room. The school day ends with the children playing instruments, marching to music and freeze dancing. Cost of instruments....$20.00, sound system and music....$200.00, the sound of your child giggling with gusto....PRICELESS!

This week, Molly also continued with her ballet and tap lessons. She LOVES that class. She is just too cute in her little ballerina outfit and it is so nice to see her enjoying this activity.

Today, we had our weekly visit to the clinic. Molly's counts were all good but we had to stay for a prophylactic antibiotic Molly receives once per month by IV. One good thing was that we got to see our friend Zoe, even though it was a brief visit. Zoe had been sleeping after receiving her 4th blood transfusion of the week. Her mother said that the doctors think that the need for so many blood transfusions is from the radiation Zoe received and that hopefully, by next week Zoe's body will stabilize a little bit. If anyone reading this ever thinks, "I wish there was something I could do to help," well there is. You can donate blood. It is so needed and crucial, especially platelets which can take a couple of hours to give but are lifesaving. Make an appointment with your nearest donation center and become a true lifesaver!!!

As for our weekend, we plan to enjoy a couple of days together. Tomorrow, we will be at a large garage sale at my parents' church. And Sunday....we WILL be at the Barney Live show at Radio City Music Hall, thanks to one of Roly's good friends from his prior job. This woman, Daveyba, was so kind to us. She works part-time at Radio City and was able to help us get great seats in the middle of the orchestra. Molly is going to have a blast. We will definitely take pictures for you all to enjoy. Billy is not joining us for Barney, as I'm sure you can understand. He is MUCH too old and mature for that. Instead, he will be with his cousins, Katie and Emily, and that will be a thrill for him. By the way, as an aside about Billy, he bowled a 95 the other day. (He's on a league.) He so desperately wants to break 100! Hopefully he will soon.

OK, I guess that is the news for now. Enjoy your weekend!

With much love,
D,R,B and M.

Monday, September 27, 2004 9:17 PM CDT

Hi there,

Just a quick note to tell you that Molly seems to be feeling much better and is just about back to herself today. We did not have to go to the clinic, since she was drinking well and did not show signs of dehydration. She did not vomit at all today. I did keep her home from the Morgan Center though because I didn't want to take the chance of exposing the other kids to something just in case Molly was brewing an illness. But now, I really think all that went on over the weekend was owing to the chemo she got on Friday. So, we're off (hopefully) to a better week! In fact, we are hoping to get tickets to take Molly to see Barney Live at Radio City on Sunday but since we waited until the last minute, I'm not sure if we'll be able to get them.

Wishing you all a great week!

Love,
D,R,B and M.

Sunday, September 26, 2004 3:34 PM CDT

Hello there,

Molly hasn't been feeling too well since she received her chemotherapy on Friday. She spent most of Saturday vomiting and today, she is still under the weather. She vomited once today but she's tired and has been laying on the couch sleeping/resting for most of the afternoon. I'm not sure if this is because of the chemo or if she is coming down with an illness. She has no fever. Of course, tomorrow would be the first day of school for Molly at the Morgan Center. Unfortunately, I think that there is a good chance that we will end up at the clinic instead of school.

OK, I'm off to continue to sort through mail that has accumulated while "cursing" the Yankees for their performance as they continue to get creamed by the Boston Red Sox. Sigh.....

Love,
D,R,B and M.

Friday, September 24, 2004 10:25 PM CDT

Hello again,

Well, today we started Molly's 2nd of 8 Long-term Maintenance (LTM) cycles! Even though each cycle is 12 weeks long, at least we are moving in the right direction. Her counts were all good today so Molly received intrathecal methotrexate (spinal chemo) along with vincristine (IV medication), 6MP (oral meds) and steroids (dexamethasone for 5 days). She is so unbelievable! How she handled it all without so much as a complaint, I just don't know. She is really, really good and cooperative now when it comes to sitting still in order to have her port accessed and even for the physical exam that the doctor has to conduct each week. I guess she has just gotten used to it all so it has become rather routine. On the one hand, that is a very good thing and on the other, it is so sad that spinal taps and bone marrow tests and IV's and chemotherapy and blood draws (you get the picture) are routine.

Now that things have stabilized for Molly (and consequently, us too) at least a little bit, I have decided to update the webpage on an "as-needed" basis more so than on a daily basis. If there is news to share, don't worry...I will share it! But if there is nothing significant to let you know about, assume all is well!

Well, we hope you all have a great weekend!

Love,
D,R,B and M.

Thursday, September 23, 2004 9:37 PM CDT

Hello to everyone,

We had a busy day today! Molly had her ballet and tap class this morning. She is doing much better with following along with the teacher and the class. She really enjoys it. After, we met her teacher, Miss Nancy from the Morgan Center for lunch. It was a trip to Friendly's for us and Molly enjoyed being in a restaurant. After that, Molly accompanied me to find a dress for a cousin's wedding this weekend. Miraculously, I found one! She was so cute in the dress store and of course wanted me to buy something that Cinderella would wear! After that, we picked Billy up from school and Molly fell fast asleep in the car on the way home. As she napped and stayed home with her cousin Joe, Billy and I went to bowling. He bowls every Thursday on a league. He loves it. Today he bowled a 92 and he got a split down giving him a spare! He was thrilled.

Tomorrow in the early morning, we will be off to the clinic. Molly starts her second round of long term maintenance. Each round lasts for 12 weeks and we have 7 more to go. Molly will have a spinal tap and receive chemotherapy in her spinal fluid. She will be "NPO" which means "nothing by mouth" for the morning due to the fact that she receives anesthesia for the procedure so it promises to be a morning filled with fun, fun, and more fun. We'll let you know how it all goes.

Love to you all,
D,R,B and M.

Thursday, September 23, 2004 0:09 AM CDT

Hi -

This is a very late entry so I will keep it short! Molly had a good day playing with her papa today while mommy went to work for the day in Baldwin. I tested a child and it was so nice to go and be in a school setting again. The child was so cooperative so it made the day much nicer.

Billy had a good day in school too. I think he is really enjoying second grade. Tomorrow we're off to "ballet" again and the prima ballerina is looking forward to that. It is also Katie's birthday (Billy and Molly's cousin). Even though we celebrated over the weekend with the family, it would be nice to be able to see her for a little bit.

OK, have a great day.

Love,
D,R,B and M.

Tuesday, September 21, 2004 10:43 PM CDT

Hi there,

Today was an exciting day for Molly. Today we went to the "Welcome Back to School" party at the Morgan Center. As usual, everyone there was just wonderful and provided the nicest party for the kids. Blues Clues came and Molly just couldn't stop dancing with her, hugging her and basically, monopolizing her. She was SO HAPPY to see her friends and teachers. There were also quite a few new children there today too. In fact, so many kids enrolled that the class had to be split in two in order to appropriately meet the children's needs. While on the one hand it is good because the word is getting out about this special school, it was sad too to see so many new faces, all of them so young and struck by cancer.

At home, Molly and Billy continued to torture each other. Right before bed, Molly bit Billy again!! I couldn't believe it! She never bites anyone except her brother and each time, she chomps down hard and draws blood!! Thank God he was already on antibiotics for the last bite she gave him less than a week ago! This time though, Billy was not completely innocent. He was told to climb into HIS bed and instead, he climbed into MY bed, which happened to be where Molly was watching the end a movie. He probably got way too close and invaded her space and she bit him. I don't know when these two are going to learn! Of course, chaos ensued from that point on. For now, all is well and everyone is sleeping. Think I'll go join them.

Love,
D,R,B and Little Miss Dracula

Monday, September 20, 2004 10:46 PM CDT

Hello to everyone,

What a nice day we had today. The weather was really beautiful here in Long Island, bright sun and cool temperatures. Billy returned to school after a 4 day weekend. I think he was actually happy to go, even though he complained a little. Molly on the other hand can't wait to get back to the Morgan Center. We are going tomorrow for a "Welcome Back Open House" and I believe that there will be a visit from "Blues Clues" herself! Molly will be so excited. She is really looking forward to getting back to school.

Molly and I spent the day together at home today. We made an attempt at toilet training. I really think she is ready in some ways and in other ways, I just don't know. She sat on the potty but never actually succeeded in using it. However, she succeeded in getting me to take out the Resolve Carpet cleaner on more than a few occasions. Sigh! I guess this too will come in time.

Hope you had a great day!

Love,
D,R,B and M.

Sunday, September 19, 2004 10:11 PM CDT

Hi there,

Another busy day today. I took Billy and my niece, Katie to our cousin's 1st birthday celebration in CT. Since the party was in a crowded restaurant that was not limited to our party only, Roly and I decided it best to keep Molly at home. I felt so bad leaving her but she and Roly had a great daddy/daughter day. They did some chores in the house and they went foodshopping together. Molly went decked out in her Cinderella ball gown. It must have been a sight in Stop-N-Shop! Molly continues to look good overall, however, she has been a bit more tired lately. I don't think that the fatigue is anything to be particularly concerned about since her counts have been good for the past few weeks. We'll just keep an extra eye on her.

Take care!

Love,
D,R,B and M.

Saturday, September 18, 2004 9:48 PM CDT

Hi again,

Today was busy, busy, busy. Billy and I went to NYC with a nice group of people to celebrate the birthday of one of his friends. We left early and took the train into Manhattan. Then we all took the subway to a restaurant called MARS 2112 for lunch. This restaurant is similar to the themed restaurants you would find in Disney World. It's like being on Mars. The kids had a great time and it was fun for everyone. As soon as we got home, we picked up the rest of our family and headed to my brother's house to celebrate yet another birthday. Our niece Katie is turning 8 and today was her family party. Molly had so much fun being with her cousins. Billy and Katie were completely absorbed by Katie's new "Game Cube" and they played a lot of video games!

Molly was quite tired by the end of the party but it was a "good" tired. She enjoyed herself so much that she just got worn out and fell asleep before we even got home.

Hoping for another fun day tomorrow.

Oh, and for some very GOOD NEWS now....our good friend that we met at the hospital, Zoe, is now FINISHED with her chemo and radiation. She received her own stem cells in a stem cell transplant and she is doing really well. After being diagnosed with a Stage 4 Wilms' Tumor, she is now cancer free and is on the road to reclaiming her life! Please, if you get a moment, stop by her webpage at www.caringbridge.org/ny/zoec and leave her a note of congratulations and encouragement. If it wasn't for Zoe's family, we would not have known about this caringbridge site. They have been amazingly strong. May God bless them all now and always! Way to go Zoe!

With love,
D,R,B and M.

Friday, September 17, 2004 10:26 PM CDT

Hello there,

Another day down! Molly and I went to the clinic and we had good news. Her counts are all good (ANC is a little over 1,000, hemoglobin is about 11.5, and platelets are in the mid 200's). She will continue on a full dose of chemotherapy this week. Next week, she is scheduled for intrathecal (spinal) chemo. As for those birthday parties that we wanted to attend, it looks like we will go to my niece's, Katie's, since it is at home and will be small. However, the doctor was a little concerned about taking Molly to the other party, as there will probably be a good amount of kids there and it will be in a restaurant.

Tonight, I had a few of my girlfriend's over to do some scrapbooking. What was supposed to be a relaxing evening turned out to be a little chaotic. Molly got a little wild and she bit her brother. Poor Billy! This is not the first time Molly has done this! She actually broke his skin and now he needs to be on 5 days of augmentin. How he didn't slug her back, I don't know but I'm thankful that he showed some great self-control. Let's hope Molly settles down a little bit tomorrow!

Well, goodnight for now.

With love,
D,R,B and M.

Thursday, September 16, 2004 10:36 PM CDT

Hi there,

There's not too much new to report and that is a good thing! Today, Molly had her 2nd ballet and tap class and she again just loved it. At first, we thought she might not be able to go because one of the children in the class had a little cough and the mom called to tell the instructor that. The instructor called me and we spoke about it. We decided that since the room is so big, the instructor would try to prevent the kids from being right next to each other, holding hands, etc. If the child appeared ill or was coughing alot, we would not stay. It turns out that the child coughed once and I don't think it was much of an issue. I think that the mom was just being overly cautious because she knows that Molly could get ill easily. Better extra safe than sorry!

I saw a couple of clients in the afternoon and that was good. It's really good to not think about leukemia, even if only for a little bit of time. When I'm focused on my clients' issues, it's almost like a break away from mine.

Tomorrow we go to the clinic and will of course hope for good counts again. Molly has two cousins' birthday parties this weekend and we would love to be able to go.

Will let you know how it goes. Also, Molly's grandma Nora has been in the hospital for the past couple of days in Florida due to some stomach difficulties. Please keep her in your prayers that all will be fine soon.

With love,
D,R,B and M.

Wednesday, September 15, 2004 10:32 PM CDT

Hi there,

Today, Molly and I had a relatively productive day. "We" were able to get some work done at home and managed to fit in a trip to my mom and dad's house for a visit. Molly always enjoys her time with Grandma and Grandpa. Her appetite is still just "so-so" though she looks good and is acting fine.

Billy had a great day at school but he is happy that he has no school tomorrow or Friday due to the Jewish Holidays.

I am kind of tired so I will be heading off to bed soon. Hope everyone reading this is having a good day.

Love,
D,R,B and M.

Tuesday, September 14, 2004 8:59 PM CDT

Hello again,

Luckily, Molly does not seem to be coming down with anything but her appetite is still rather poor. She spent most of the day at home with me, playing with her "make-up" (i.e., a bag stuffed with as many little things you can imagine, including make-up!) and watching some DVDs. We ran out and did a quick bit of shopping and Molly liked that. She seems to be in good spirits overall.

Tonight was open school night for Billy. We got to know a little more about his teacher and so far, she seems like an angel. I think if anyone can really "turn him on" to school this year, it's his teacher!

Tomorrow evening I will be working in my office and that is exciting for me. Thursday too.

Let's hope for a good day tomorrow.

Love,
D,R,B and M.

Monday, September 13, 2004 9:08 PM CDT

Hi again,

A relatively quiet day at home today. Molly played a lot with her cousins and she was very sad to see them go. Tonight Megan and Bryan are in Brooklyn with our aunt and uncle and tomorrow they should be heading home to Florida as long as Hurricane Ivan doesn't cause any problems for them. Billy returned to school today and got his first full night of homework. Though not thrilled about it, he did it and did a good job too.

I am in the process of trying to get my private practice back up and running. I am very lucky that so many of my clients are returning. I am looking forward to getting caught up with them and to working again.

Molly fell asleep at about 6 pm tonight. She was so tired and she hasn't gotten up to eat any dinner. In fact, she didn't eat much at all today and that is never a good sign with her. She sneezed a bit too today so we're just hoping that she is overtired and not coming down with something. Only time will tell.

Wishing you all well.

With love,
D,R,B and M.

Sunday, September 12, 2004 9:54 PM CDT

Hello again,

In the wake of a sad day yesterday, we decided that today, we would make the most of a beautiful day on Long Island. Our niece Megan, and nephew Bryan, came to visit this weekend from Florida. Roly's sister sent the "kids" up here to escape any possible difficulties from hurricane Ivan, which may or may not hit Florida at this time. No matter what the reason, we are always so happy to see the kids and they are happy to see us and their brother Joe, who is now living with us in NY while he attends college. We decided to go out east and do some apple picking today. It was just great! The orchard was full of apples and plenty were ready for picking now. Some varieties won't be ready for a number of weeks but somehow I think a trip back to the orchard later on won't be out of the question! Molly and Billy had so much fun picking the apples. We also got to go on a tour of the orchard and farm, which has been owned by the same family for 12 generations. We learned lots of interesting things, like at the start of the season, 10 colonies of honeybees are rented to help cross pollinate the flowers so that they get many, big beautiful apples. Who knew that you could rent bees? It was so nice to be outside, to have Molly feeling well enough to enjoy the day and to see our kids with their cousins, who unfortunately, they do not get to see often enough.

Tomorrow it's back to school for Billy but he'll be going with a bag of apples for the class! As for the rest of us, we will be getting settled for another week.

Hope all is well with all of you.

With lots of love,
D,R,B and Molly, the "Apple" of our eye!

Saturday, September 11, 2004 11:01 PM CDT

Hello to everyone,

Molly continues to do well and we are so grateful for that. However today, 9/11, is such a sad day for our nation and for so many that were directly impacted as a result of the terrorist attacks on our country. Throughout the day, I couldn't help but think about all of the lives lost 9/11 and since the war began. Living in New York, the media just kept replaying over and over again the tragedy that occured. It was difficult to watch.

Today was also sad because another child lost his battle with leukemia. A young boy named Thomas Peterpaul died at 9:11 pm on 9/11. Thomas had a website at www.caringbridge.org/nj/thomaspeterpaul. Thomas was a child we came to know through an on-line support group for parents and caregivers of children who have ALL. Although Thomas initially did well, he relapsed a year into treatment and received a bone marrow transplant. He endured many, many complications and lost his battle this evening. Heaven has a new angel watching over us. It is so, so heartbreaking. When something like this happens, it shakes me to the core. I feel devestated for the family and terrified for us. It is so hard to have no control over this and to not know what the future holds. Please say a prayer for this family and all of the families that have children who are ill. Please pray that Molly continues to do well and remains in remission. Please, enjoy each moment that you can with your families. Cherish the good times and be good to one another.

God bless you all and God Bless America today and always.

With much love,
D,R,B and M.

Friday, September 10, 2004 11:18 PM CDT

Hello,

Today we went to the clinic for Molly's weekly appointment and check-up. Her blood counts were all rather good and we were of course pleased with that news. Molly will continue on her full dose of chemotherapy for this week. She actually had a good time at the hospital, as she adores one of the child life volunteers named Danielle. We also got to pay a visit to our friend, Zoe, who is back in the hospital for a fever and a staph infection in her central line. Despite the infection, Zoe looked great!

After the hospital, Molly and I paid a visit to the local mall, a place she hasn't been to for quite some time. She loved looking at all of the stores and especially liked this shop that sells make-up and other "girly-girl" things to young girls. She picked out a little bag of real make-up and she has been playing with it all day. She also LOVED the carousel ride that is in the mall. She was amazed at how the horse went "up and down". Natually, we had to stop at the Disney Store, where Molly chose a few more treats. It was nice to be able to spend time together with her doing fun things. Her smile could have lit a room today.

Tonight, we had so much fun at our neighbor's, the Lovarco's home. They invited us for a barbeque and the kids all swam in their pool. They just put the pool in, along with a beautiful hot tub. The kids kept going back and forth between the pool and the hot tub. Billy asked for one for Christmas! Dream on poor Billy!

Hope you all had a great Friday! Enjoy the weekend.

Love,
D,R,B and M.

Thursday, September 9, 2004 10:45 PM CDT

Well hello there,

What a busy day! The Prima Ballerina (AKA Molly) had her very first ballet and tap class this morning. It is taught by "Miss Eileen," who volunteers at the Morgan Center and has a dance studio in Bayshore. As I suspected, Molly marched (or tapped or tiptoed) to the beat of her own drummer. She was just so enthralled with seeing herself in the mirrors in her dance outfit! She danced, and danced, and danced some more...but not with the class or the instructor! She had the best time though. Hopefully, she will catch on that the idea is to COPY the teacher and follow along with the group. After class, we got to visit with Molly's teacher from the Morgan Center, Miss Nancy. It was so nice of her to come to the dance class, just to have a peek at Molly on her first day.

Billy continues to like school (see, there are miracles)! He started bowling again with his friend Matty in a league after school. Well, we have the clinic tomorrow. Let's hope for good counts!

With love,
D,R,B and M.

Wednesday, September 8, 2004 10:51 PM CDT

Hello,

Well, Billy is officially a 2nd grader! He loved school today and is actually excited about going back tomorrow. Let's hope the excitement lasts.

Miss Molly is getting a little antsy these days. I think her first ballet/tap dance class will serve her well tomorrow. She is so excited. I just hope she cooperates and decides not to be.....let's just call it "too self-directed" or "spirited" (AKA "stubborn as a mule and suffering from early PMS"!) I know she can't wait to put the leotard on. I'm excited too because it will be one of her first "normal" activities since she was diagnosed last year.

Will let you know how it goes. With any luck, we'll have a few new pictures for the website!

Love to all,
D,R,B and M.

Tuesday, September 7, 2004 10:50 PM CDT

Hello again,

We had another good day. I just can't type that enough times..."another good day". We'll take every one we get! Molly enjoyed her dad today, as he was home from work. He took today and tomorrow off as a couple of vacation days. Billy and I went to Burger King for lunch, the restaurant of choice since they are giving out Yu-Gi Oh toys. Then we got the last minute back to school supplies, since he's off to 2nd grade tomorrow! 2nd grade!!!! Where did that time go? He got to see his buddies, Michael and Nicholas for a little bit and he was so happy about that.

Tomorrow, I will probably follow Billy's bus to school (neurotic mom that I am) to see how long it actually takes him to get there. He hates the bus and gets naseaus on it so if he's on it too long, we'll have to try to make other arrangements.

Wish us luck!

Love to you all,
D,R,B and M.

Monday, September 6, 2004 10:02 PM CDT

Hi there,

A quiet Monday at home that felt a lot like a Sunday. In the late afternoon, we visited with Grandma and Grandpa at their house. Now, we are on a mission to get ready for the start of school on Wednesday. Poor Billy is so sad to see the summer go. He's not thrilled with the idea of sitting in a classroom all day and coming home to homework. However, he has a WONDERFUL teacher this year (or at least, that's what we hear!) If she helps him to like school and to love to read, I will consider the year a huge success.

Molly will miss Billy when he's gone all day but hopefully between the Morgan Center, dance class and clinic visits, there won't be too much time to feel lonely.

As for me, I am very excited to begin working "up to speed" in my private practice. The goal is to have my schedule up and running by the end of the month.

Well, until tomorrow....take care!

With love,
D,R,B and M.

Sunday, September 5, 2004 10:34 PM CDT

Hi,

Unfortunately, the weather was not too cooperative today so our hope for a day at the beach didn't work out. Instead, we had just as much fun bowling and visiting with our friends, the Rosenbergs and the Fredricks (though we missed Steve!) Molly loved bowling but even more, she loved playing with Jenna, Melanie and Shannon. She cried for Melanie like crazy when it was time for everyone to go home. Billy also had so much fun playing with the girls. Molly continues to look good and is acting well. We are thankful for everyday like that.

Tomorrow, we plan to rest up and get ready for the return to school for Billy and a little bit of a more structured routine for the rest of us.

Take care!

Love,
D,R,B and M.

Saturday, September 4, 2004 10:52 PM CDT

Hello to all,

Well, the little barbecue we planned for today turned into a "BIG" barbecue and it was so much fun. A couple of our neighbors and their families came along with my brother and his family, my parents, Roly's aunt and uncle and some additional friends of my mom and dad. The pool got a good work out, as did the group of kids (and some adults too) who were in it. Molly wouldn't get out for hours!! She got a little daring and kept going to the "deep end". She wanted to jump off the diving board but kept losing her nerve. That's fine with me! I spent a good deal of time in the "deep end" too, just to be close to Molly. Billy was so happy to have a bunch of kids at the house too. This get-together was much like the summer parties we enjoyed hosting before Molly got sick. It was nice to be able to do it again.

We're hoping to hit the beach in the Hamptons tomorrow. My cousin has a house out there and invited us over. Even though I don't think you can swim b/c of the rip tides due to the hurricane, it will be fun to make castles on the beach and enjoy a nice day.

Hope you all have a nice day too.

Love,
D,R,B and M.

Friday, September 3, 2004 10:27 PM CDT

Hello to everyone,

We had good news at the clinic today. Molly's counts were all great! Her ANC was over 4,000 and her other counts were high too. The high ANC is probably partly owing to the dexamethasone she recently completed and also, last week she was only on a 75% dose of the 6MP and oral methotrexate. Since she is doing so well with her counts, her dose was raised back to 100%, so she is now back on the full dose of the chemo she should be on. Molly also received her monthly dose of pentamidine today, which is a prophylactic IV antibiotic. Even though we had a 7:30 am appointment, we weren't seen for a long time and didn't get out of the clinic until the afternoon. That is frustrating but still, the good news about her counts is more important than the wait.

After the hospital, Molly and I took advantage of her good counts and we did a little shopping. She is going to take ballet and tap dancing classes and they start next week. We shopped for her shoes and a leotard, which Molly was excited to pick out. She chose a little black outfit with a skirt. She wore it all night. She looked like a real little ballerina and she was pleased as punch. Molly will be taking dance in Bay Shore from a woman who teaches at the Morgan Center. She closed the class out at 4 pupils, so Molly wouldn't be exposed to too many children. The teacher, "Miss Eileen" is so nice to do this for us and we are so grateful to her. I really think Molly will enjoy this activity!

Billy had a great day himself. He went to work with his dad and he made many copies using the copy machine. He copied paper clips, his Yu-Gi Oh toy from his "Happy Meal", his hand, etc. He loved it. He also got to take the trip to the BIG Toys R Us in NYC and he of course, loved every minute of that too.

We are looking forward to a little barbecue in our yard with our neighbors tomorrow. We hope to get a little more use out of the pool before the season ends.

To all of our friends and family in Florida, we are thinking of you and praying that the Hurricane stays away from you all!

We love you,
D,R,B and Molly, the newest Prima Ballerina

Thursday, September 2, 2004 8:10 PM CDT

Hi again,

Just a quick note to say all is well. We stayed home today and enjoyed a visit from Billy's friends, Alex and Andrew and their mom. The kids swam in the pool and after, we made homemade snow cones, thanks to the Sponge Bob Snow Cone Maker sent to us by Roly's friends at Health Matters. That was a big hit with the kids. I can't wait for them to get into bed so the grown-ups can try it out themselves!

We have an early morning clinic appointment tomorrow. We have to be there by 7:30 am (yuck!) Will let you know how it goes.

Love,
D,R,B and M.

Wednesday, September 1, 2004 10:09 PM CDT

Hello,

Can you believe that it is September? I don't know where the summer went. Billy doesn't start school for another week so we will try to pack in as much fun as we can until then. Today we went to a park by my parents' home. There is a big open "sprinkler park" within the main park. Billy and Molly had so much fun running from and through the fountains. They made friends with the children who were there and both had so much fun playing. It was great to see.

Tomorrow, two of Billy's friends will hopefully be coming over to play. If the weather is good, there will probably be some swimming going on. Molly is definitely up for that, as she just loves the water. She seems to be feeling pretty good overall, although she complained earlier today of some stomach pain. She really didn't let it stop her though, so that is good.

OK, enjoy the day!

Love,
D,R,B and M.

Tuesday, August 31, 2004 10:55 PM CDT

Hi there,

Molly had a good day today. She just gets more and more adorable each day. Some of the things that come out of her mouth really have us laughing. She has an amazing memory and I marvel at how she recalls all of the details of her day as soon as Roly or someone comes through the door at night.

Today, Billy's friend Matthew came to play. Molly loves him and in fact told him so. Matthew, who just turned 8, told me with a concerned look on his face that "Molly told me she loves me....and I think she's serious"! I reassured him that he probably doesn't have too much to worry about...yet. Anyway, all of the kids and I swam in the pool for a bit. That was fun. Tonight, Roly, Billy and I went to see a concert (the American Idol Tour) at the Nassau Coliseum. It was a lot of fun and I think Billy really enjoyed it.

Hoping that all of you who are beginning school this week have an easy start to the year.

Love,
D,R,B and M.

Monday, August 30, 2004 10:47 PM CDT

Hi there,

A quiet, calm day today. Thank God. Just the kind of day we all needed. Basically, Billy, Molly and I hung around the house and enjoyed each other's company. We did some chores that needed to get done and by the early evening, we took a ride to my parents' house. I went to the dentist (a cap I had fell out and needed to get replaced) while the kids played with their grandparents. My mom and dad took us out to dinner and even though the kids were a bit restless, it was nice to not cook and instead, to be waited on. Roly also had a fairly good day. He was nervous about getting into Manhattan with the Republican Convention in town. He left extra early and said that the train was not crowded and that the commute was not bad at all. He was able to get home a little early too. There are lots of protests scheduled for tomorrow so we're hoping that tomorrow goes as smoothly as today did.

Until then.....

Love,
D,R,B and M.

Sunday, August 29, 2004 9:02 PM CDT

Hello to everyone,

Today was a beautiful day. Molly seemed to be feeling well and thankfully, she continued to be fever-free. I wish we could say that we all slept well but since she's at a point in her chemo cycle that she is back on steroids, her sleeping is off (and so is ours!) At about 2:30 am, she HAD TO EAT pepperoni. This child has some strange eating habits!

Since Molly seemed to be feeling well, we decided to go and see the Long Island Ducks baseball game with the Morgan Center. Billy was SO EXCITED!!! He thinks it was one of his best days ever. We got to view the game from a sky box, complete with indoor and outdoor seating, lots of food and drinks as well as special treats. Billy got to go on the field and he obtained some autographs before the game. After, he got to run around the bases and see himself on the big screen in the ball park. Best of all, we got to see some of our friends from the Morgan Center that we haven't seen in a while. Molly was very happy to see the kids but she was tired (from getting up all night to eat!) and a bit cranky. Eventually, she asked to sit in her stroller and she was fast asleep in only a few minutes. Overall, it was a great day.

Hope you all had lots of fun too. Only 2 more days of steroids to go. Wish us luck!

Love,
D,R,B and M.

Saturday, August 28, 2004 11:11 PM CDT

Hello,

Today Molly woke up feeling well. She had no fever and her appetite was back. She was happy all day and enjoyed a visit from one of our neighbors and her 2 daughters, Lauren and Lindsey. My parents also stopped in and of course, both Molly and Billy were delighted to see them. Being a "Cinderella nut," Molly also thoroughly enjoyed watching a new DVD she received called "Ella Enchanted." The movie is loosely based on the story of Cinderella. It was a cute movie and Molly really followed the whole story and seemed to understand it all. In the afternoon, the home care nurse came and administered Molly's 2nd (and final) dose of Ceftriaxone, the IV antibiotic she has been prescribed. It came in a pouch that looked like a huge super ball and did not require an IV pump to infuse. It took about 30 minutes to get into her line, which is how long it would have taken had the medication been administered with a pump. Anyway, it was very cool and a lot more convenient than being hooked up to a pump and IV pole. When I go to the clinic next week, I will ask exactly what it is and how it works.

If Molly continues to look well tomorrow, we will probably go to the LI Ducks baseball outing with the Morgan Center. The seats are in a private sky box and Molly won't be running around all over the place. Roly and I went one night without the kids and it was great. I think Billy especially will enjoy the outing. Well, that's the news for now.

Hope everyone is having a nice evening. Until tomorrow....

We love you.

D,R,B and M.

Friday, August 27, 2004 6:33 PM CDT

Hi there,

Well, life is never dull for too long around here. Even though Molly looked GREAT yesterday, was acting fine and even saw the doctor for a checkup, today she woke up not feeling too well and she had a little fever. So, back to the hospital we went. More blood work was done. Her ANC jumped to 7,000 which is quite high and the blood test results suggest that she might have some type of bacterial infection. She received a dose of Ceftriaxone (IV antibiotic) and needs to get another one tomorrow. Since the clinic will be closed, we've arranged for a home care nurse to come and administer the medication at the house. That is great because we get to avoid a trip to the ER. Let's just hope that she is without fever from now on. We have a trip with the Morgan Center on Sunday to see the Long Island Ducks (baseball team) and we were looking forward to seeing all of our friends. So, we'll "play it by ear" and see how it goes.

Love,
D,R,B and M.

Thursday, August 26, 2004 8:30 PM CDT

Hello to everyone,

Good news! Molly's counts were way up and as a result, there is no need to do the bone marrow test tomorrow that she had been scheduled for! We are so happy about that. The doctor increased her chemo to 75% of what it should be and if her counts remain good, then she will probably go to 100% next week. Molly looks great -- she is a bundle of energy and her hair is coming in so thick. Today, she received vincristine and tomorrow she will take methotrexate by mouth. She will also go back on steroids for 5 days so we will begin stocking up on a few of her favorite food items, which these days continue to consist mainly of pepperoni and salami, though now she has added Swiss cheese to the repertoire. Her Grandma Nora turned her on to that. The results of a blood test that we were waiting on also came in this week. Basically, the test indicated that Molly does not have difficulty metabolizing the 6MP (chemo drug) and that is good news. So, her low counts earlier in the month may very well have been owing to the intrathecal methotrexate she received. I guess we'll never know for sure.

Before we left the hospital, our social worker asked if I would speak with a family who has been newly diagnosed with leukemia. Seeing the mom brought those first weeks back quite vividly. It's all so overwhelming at first. The little boy, Brendan is 5 and so adorable. Please keep him and all of the kids who are suffering with cancer in your prayers.

We also got a chance to see Zoe's mom briefly. She just had a C-Section and she was up and about and looking just beautiful! We did not get to see Zoe but we hear that she is doing very well and we are so happy about that too.

After the hospital, Molly got to play with her cousins, Katie, Emily and Sophia. She was thrilled to be with them, even though Molly and Sophia torment each other at times.

Overall, it was a good day.

That's the news for now. As they say on SNL, "Goodnight and have a pleasant tomorrow".

Love,
D,R,B and M.

Wednesday, August 25, 2004 9:31 PM CDT

Hi there,

I'm happy to say that we had another good day today. Molly woke up wanting swiss cheese. Of course, there was none in the house so we got dressed and walked to the supermarket. After, we visited with my mom and dad at their house and then we stopped by another friend's home to drop something off. This friend, Aida, has two girls and a boy and our kids were thrilled to play with them for a little bit. Tomorrow, Molly and I go to the clinic. I'm keeping my fingers crossed that her counts are good and that the bone marrow test she is scheduled for on Friday gets cancelled. We'll see. While we're at the hospital, Billy will go with my mom to his cousins' house. He is so happy b/c he loves to play with Katie, Emily and Sophia.

Wishing you all a happy day.

With love,
D,R,B and M.

Tuesday, August 24, 2004 10:26 PM CDT

Hi to everyone,

As I sit here tonight and write this entry, I am filled with gratitude for the day we had. It was not eventful but rather very ordinary. I never thought an "ordinary" day would fill me with such feelings but it has. You see, today while Molly and Billy played together and argued together, made a mess and cleaned it up, fought over which show to watch on TV, complained about having to wash up and brush their teeth, made a fort under the covers (of the bed that had just been made), etc., our friends Laura and TJ attended the funeral of their 4-year-old, Sean. I couldn't help but think of them all day long. The wake last night was just so sad and today had to be even more difficult. So an ordinary day in our house....I couldn't ask for anything more. Except for a guarantee that when Molly is done with her treatment, she will be cured and go on to live without one further problem or complication. Of course, I know that there are no guarantees for any of us but I would just like to have one. I guess while I'm waiting for that to happen, I will be more than satisfied with a string of ordinary, uneventful days.

With much love,
D,R,B and M.

Monday, August 23, 2004 8:37 PM CDT

Hello,

Molly had a nice day today. She wanted to come with me while I ran a few errands so she and I set out to accomplish a bunch of tasks. We stopped by one of the elementary schools to return something we had borrowed and we visited with my friends and co-workers at the Baldwin Middle School. Molly laughed her head off with the counselors. She really had a good time. Then I dropped her at my parents' house while I did a few more things. Of course, she engaged in her usual routine of smelling my mom's perfumes, exploring her make-up, etc. She even got my dad to paint her nails for her! Imagine, he never even changed one diaper for any of his 3 children and Molly had him painting her nails!!

Billy was not interested in running errands so he stayed home with his cousin, Joe. I believe a lot of TV watching and video game playing went on today.

That is the news for now.

Love,
D,R,B and M.

Sunday, August 22, 2004 10:37 PM CDT

Hi again,

Today was a beautiful day. The sun shone brightly and it was a little cool. It was as if autumn was teasing us a little with what is to come in the near future.

This morning, our family went to church together. We worshipped with my parents, my brother George and his wife Crystal. Crystal sings Christian music and composes it too. Today, she sang so beautifully for the congregation. It was great for us to be there together. George and Crystal returned to Florida this afternoon, much to Billy's disappointment. He loves his uncle a great deal. Molly likes him quite a bit too, though she is still a little coy and shy around him.

In the afternoon, Billy and I attended our friends' block party for a bit. That was fun. Molly fell asleep on the couch. She was so tired from running around in the morning. She seems to be feeling good and hasn't had any observable adverse effects to the chemo which was restarted a few days ago.

Hope you all had a nice weekend.

Love,
D,R,B and M.

Saturday, August 21, 2004 7:02 PM CDT

Hi,

It has been a rainy day on Long Island. Instead of going into NYC as we had tentatively planned, we decided to take a ride out east and go to the Atlantis Marine World Aquarium in Riverhead. Molly and Billy had a great time. They both really loved looking at the shark tank, which was so beautiful. The aquarium is really quite nice and it was a fun family day. My mom, my brother George and his wife Crystal came along and it was good to spend some time with them too.

Today was also a sad day. We received a phone call that another one of our friends that we met at Schneider's passed away this morning. Sean was all of 4. He had a malignant, inoperable brain tumor and had been on hospice care at home for a number of weeks now. He died with his family surrounding him. We are heartbroken for his parents, Laura and TJ, as well as his sister, Kathleen. Please pray very hard that they all have the strength to bear what is to come. It is just not fair.

If there is anything even remotely valuable that can come from all of this insanity, it is to remember what is important in life; that is to cherish those you love and "don't sweat the small stuff". It is to remember that truly, as long as you have your health, anything is possible. It is to value each day, live life to the fullest, take joy in the mundane and celebrate life. Be good to one another always.

With love,
D,R,B and M.

Friday, August 20, 2004 10:22 PM CDT

Hi there,

GOOD NEWS!! Molly's counts have finally come up enough to re-start chemotherapy. Her ANC is now 1258. That is a dramatic rise from the 190 that it was at a week ago. That rise happened without any drug or medication like neupogen or GCSF helping it along. Thank you for the prayers - they worked!

The rest of Molly's counts were good too. Her hemoglobin has been holding at 12.4 and her platelets were 390. Those are excellent counts. The doctor put Molly back on half doses of chemo to start and next week, she'll get checked again on Thursday. She is scheduled for a bone marrow test on Friday but if her counts stay high, it will probably be cancelled. Let's hope all continues to be good.

Today, we had a visit from some friends, Tim and Karine and their 2 boys, Tommy and Eric. They stopped by and had dinner with us on the way home from Shelter Island. We have not seen the boys for quite some time now. The kids had a great time playing together.

Tomorrow, Billy and I might go to NYC with my brother and his wife, Crystal. We may take in a few sights and if I know Billy, a trip to the big Toys R Us in Times Square is probably on the "to do" list. We'll see...

OK, thanks again for all of the prayers and support. Leave us a message if you stop by and visit this webpage.

Love,
D,R,B and M.

Thursday, August 19, 2004 10:43 PM CDT

Hello there,

Molly was a very happy girl today. Her friend from the hospital, Eric, came over with his mom for a visit. Molly loves Eric and she enjoyed playing with him. After they left, Molly was sleepy and she again took a long nap. She does not look sick and is not acting ill but she has been more sleepy than usual over the past few days. Tomorrow morning we go to the clinic and we will see what is happening with her blood counts. Please say a prayer that her counts are up enough to restart the chemotherapy that she has been off of for the past 2 weeks.

Billy had a treat today too. Uncle George and Aunt Crystal came by for a quick visit. Billy and Uncle George played some video games, something that Billy loves to do. Uncle George (my brother) is quite adept at the games and Billy loves picking up tips from him. Later, I took Billy and his friend Jake to see the Yu-Gi Oh Movie. This movie was just terrible but Billy LOVED it. He actually leaned over to me during the show and said, "Now this is a movie"! He has his last day of camp tomorrow. A new school year is around the corner. I can't believe that I have to get the school supplies, clothes, etc so soon!

OK, hope everyone by all of you is well and happy.

With love,
D,R,B and M.

Wednesday, August 18, 2004 10:10 PM CDT

Hi again,

Well, another day down. Molly was happy but a little tired and sleepy today. She took a long nap again . I'm curious to see what her counts are when I take her in to the clinic on Friday.

Nora, Rolando and Vicky all returned home to Florida today. It will be the first time they see the damage to their homes following Hurricane Charley. We're hoping it's not too bad.

My brother George and his wife Crystal decided to come to NY for a visit. Crystal teaches Kindergarten in the Ft. Meyers area but school is closed until Monday so they decided to come in for a visit. We're looking forward to seeing them. They got on the same plane that my in-laws flew home in. Small world.

OK, stay well and enjoy what is left of summer. Savor it!

Love,
D,R,B and M.

Tuesday, August 17, 2004 10:22 PM CDT

Hi there,

Another good day for Molly. She enjoyed playing with her Aunt Vicky who is scheduled to return to Florida tomorrow along with my in-laws. Molly took a long nap today but she was happy when she awoke. She hasn't really complained about anything hurting her either.

Vicky and my in-laws live in the part of Florida that was hit the hardest by the recent hurricane. Luckily, everyone was fine and although they are the recipients of some damage, for them it was not too bad. Vicky's mother-in-law however lost her home, as she lived in Punta Gorda and her house was split in two (mobile home). Keep them all in your prayers.

Until tomorrow....

Love,
D,R,B and M.

Monday, August 16, 2004 11:05 PM CDT

Hello again,

Molly had a good day today. She seems to be feeling OK overall. I guess a couple of weeks off chemo does have its benefit, even though we want Molly to get back on her treatment protocol. We continue to hope and pray that her counts come up by Friday.

Tonight we celebrated Roly's dad's birthday, which was actually the same day as the fundraiser (Aug 14th). We sang and cut a cake and the kids were both so happy to be blowing out some birthday candles!

This is Billy's last week of camp. We can't believe how fast the summer has flown by. We had so many plans for different things and while many were achieved, quite a few were not too! We can't believe that a new school year is just around the corner.

Well, until tomorrow....

Love,
D,R,B and M.

Monday, August 16, 2004 0:58 AM CDT

Hi there,

It is very late here in New York (or very early depending upon how look at it!) Today flew by and I didn't have a chance to write earlier. Molly had a good day today. She played alot with her cousin Joe who has come to stay with us while he attends his first year of college on Long Island and her cousin Lexi who stopped by for a visit. Lexi is around Molly's age and she so loved playing with her. Of course, there was some dress-up activity going on with the 2 of them. Molly also dressed head to toe in a Tinkerbell costume Roly's sister brought her. She looked SOOOO cute. I will try to post some of those pictures tomorrow. Overall, I think she is feeling OK. We'll see how tomorrow goes.

Love,
D,R,B and M.

Saturday, August 14, 2004 11:56 PM CDT

Hi there,

Today, I just don't know where to start in writing this entry. Molly seemed a little tired and just a drop under the weather today. She woke up coughing and fell asleep for the night very early. Thank God, no fever though.

Tonight, friends and family threw a fundraiser in Molly's honor at the East Rockaway Yacht Club here in New York. It was absolutely unbelievable and fabulous. SO MANY people came and it was a great success. Roly and I are completely overwhelmed by the generosity of not only our family members and amazing friends but also of total strangers who have in some way been touched by Molly's joy for life and strong spirit to fight and win. There are no words sufficient to thank the organizers, Aida and Clare and all of the people who assisted in making this event a genuine success. It is the love and support of so many that help us to get through the tough times. Thank you all from the bottom of our hearts.

With much love and gratitude,
D,R,B and Princess Molly.

Friday, August 13, 2004 11:04 PM CDT

Hi there,

Well, at the risk of sounding triskadecaphobic, Friday the 13th brought some bad luck as the date promised to do. Molly is basically OK, but her counts are still suppressed and she was not able to resume chemotherapy this week. Her ANC was 190, which is very low and leaves Molly being "neutropenic" or susceptible to infections and fevers. The doctor thinks it is the after effects of the intrathecal chemo she received a few weeks ago that is causing the suppressed counts but we're not 100 percent sure. He schedule her for another bone marrow test in 2 weeks. Also, the blood sample that was taken last week for a specialized blood test to see how she metabolizes one of her chemo medications (6 MP) was lost in a "lab accident." This is the 2nd time this has happened to us. It is a pain because the blood has to go to the Mayo Clinic to be analyzed and that takes time. Again, they took another sample and it should be sent out today for analysis. The results will take about a week. So for now, there is not much to do except wait and hope that she doesn't get a fever.

Roly's sister and our nephew Joe arrived safely from Florida today. They had been driving up for days and were able to stay ahead of the hurricane on the road. However, they live in Cape Coral, as do Roly's parents and my brother and that is the part of Florida that was hit the hardest. We don't know all of the details yet but everyone is safe. There seems to be a little damage at Vicky's house but at Roly's parents' house, we heard that a tree came down and was through the roof. We hope to find out more tomorrow. I haven't heard about my brother yet, though I assume he is safe. There is no electricity there and they predict that there won't be any for about a week. We'll let you know what is happening.

Until tomorrow....

Love,
D,R,B and M.

Thursday, August 12, 2004 10:55 PM CDT

Hello to everyone,

Molly seemed to be in good spirits today. She ate well and played a lot. When she got tired, she napped but she woke up cheerful and rested. Being off the chemo for a week now seems to have given her little body a bit of a break from being continually hit by such toxic medication. Tomorrow we go back to the clinic and Molly will have a blood test and a check up. We're hoping that she will be able to get back on to active treatment. Even though the break was good in the immediate sense of giving Molly some relief, it is not a good thing to be off treatment for too long because we don't want any cancer recurrance, etc. So, keep your fingers crossed.

Billy is very excited for tomorrow, as a Yu-Gi Oh Movie will hit the big screen. If you have a boy between the ages of 5 and 15, you'll know what Yu-Gi Oh is but if not, count your blessings! (It is a cartoon about dueling with a special deck of cards).

That's the news for now. Take care.

Love,
D,R,B and our own "Divine Miss M".

PS. Many thanks to those of you who not only visit this site to check up on us but also who leave us messages of support and encouragement. It means a great deal to us.

Wednesday, August 11, 2004 11:14 PM CDT

Hi again,

Today was a hot, muggy and rainy day in New York. The kind of August day that actually feels "thick". Molly spent most of the day playing with her toys and pretending to be different characters from her favorite stories. She was so cute in doing that. Billy had a great day at camp, as he went on a trip to Jillian's, one of his favorite places. Any place that has video games and gives "tickets" for prizes is high on Billy's list.

Molly seems to be feeling OK, not great but not terrible either. We'll take that.

Roly and I had the pleasure of going to a concert tonight at Jones Beach, something we haven't done in quite a few years. We saw "Rush" (for those of you who don't know, that's the name of a band) and it was a great concert but very loud. Our ears are still ringing. Even with the rain, we enjoyed ourselves alot.

Until tomorrow.....

Love,
D,R,B and M.

Tuesday, August 10, 2004 10:57 PM CDT

Hi again,

Another day down. Molly seemed somewhat tired and quiet again. She has become quite interested in the computer as of late and she is working the mouse with expertise! She visited with her grandparents at our house and she told my mom and dad, "My counts are low today". I'm so amazed at what she picks up and seems to understand. Even though it's only Tuesday, the week seems a little "draggy".

Until tomorrow...

Love,
D,R,B and M.

Monday, August 9, 2004 9:30 PM CDT

Hi,

Well, it is about 10:30 PM and Molly just finally dozed off. She took a late nap so her schedule was a bit off today. She seemed OK except her eyes look somewhat puffy and "allergic". I'm wondering what that is about. We'll see how they look tomorrow. Perhaps we'll run in to the clinic if they continue to look funny.

It has gotten warm again at home. Strange weather in NY for August. Well, not too much else to report today.

Love,
D,R,B and M.

Sunday, August 8, 2004 7:35 PM CDT

Hi there,

Today we had a great time at our friends', Christine and Joe's home. Their daughter Jenna is a leukemia survivor. It was great to be among friends and for the kids to have an opportunity to play with one another. Billy was the only boy among 4 other girls but he still had lots of fun swimming, putting on a show and playing on the swings. Molly had a ball swimming and dressing up in Jenna and Melanie's princess costumes (surprise, surprise). Another couple, Steve and Eileen, were there too with their daughter Shannon. We met these people quite a few years ago when Billy was a toddler and in a gymnastics class. It's so nice that the friendships have not only lasted, but grown more precious over time. Billy, Shannon, Jenna and Melanie all attend camp together but as Billy said, "The boys are separate from the girls" so he doesn't get to play with them as often as he would like.

Tomorrow I plan to do some testing in Baldwin. Molly is looking good and seems to be feeling good too. We're going to keep our fingers crossed that her low ANC does not cause her to catch any illness and that her counts build this week so that she can get back on chemotherapy by Friday.

Talk to you soon.

Love,
D,R,B and M.

Saturday, August 7, 2004 10:20 PM CDT

Hello,

We had hopes today of going to a festival at a local church. The festival was sponsored by the Luke Neuhedel Foundation, an organization that provides activities to improve the quality of life of children who are receiving chemotherapy. Unfortunately, Molly's blood counts were so poor this week that we decided not to risk exposing her to the large crowd of people at the activity. Instead, Molly stayed home and occupied herself with her toys and by playing with her grandparents. Billy went to an end of the season little league pool party and that was fun for him. Overall, Molly seems to be OK. We're hoping that we can go to a barbeque at our friends' home tomorrow. We'll see.

Love,
D,R,B and M.

Friday, August 6, 2004 9:30 PM CDT

Hello again,

Today we had a very long day at the clinic. We haven't had such a long day there in a while. We were there by 9 am and Molly had her usual fingerstick and physical exam. Unfortunately, her counts were very low (which we kind of expected). Her hemoglobin, platelets and white count were all quite low and Molly is again "neutropenic." Her ANC was 269, which leaves her rather susceptible to infections. In fact, it was too low to continue on chemotherapy for this week so Molly will miss her weekly dose of oral methotrexate as well as her daily 6MP. Molly ended up receiving yet another red cell transfusion. Receiving red cells takes quite a few hours because the blood has to be ordered and prepared by the blood bank (even when it is designated donor blood), Molly needs to be pre-medicated with Tylenol and Benedryl (to reduce the likelihood of a reaction to the blood), and the blood itself takes about 3 to 4 hours to infuse. Molly also received Pentamidine (which is a monthly prophylactic IV antibiotic) that takes an hour to infuse. By the time we left the hospital, it was after 5 PM. As usual, Molly was really great through all of it. She amused herself with the "stuff" she packed in her pocketbook. She watched movies on her DVD player. She was happy to come home to play with her grandmother.

Well, that's all of the news for today.

Love,
D,R,B and M.

Thursday, August 5, 2004 9:25 PM CDT

Hi there,

Molly was a very happy camper today. Since I went to work in Baldwin at the Committee on Special Education for a bit, her grandma and grandpa from Long Island came to stay with her. She heard lots of stories and read her library books. She went for a walk in her stroller. She played with makeup (of course) and did many other fun things. Shortly after dinner, her grandparents from Florida arrived and then she was really in her glory. Both sets of grandparents in one day!

She seemed to be feeling OK today. Tomorrow we go to the clinic and will see what's up with her blood counts, etc. We'll let you know.

Love,
D,R,B and M.

Wednesday, August 4, 2004 9:08 PM CDT

Hello again,

Molly seemed to be feeling pretty well today. She looked good and was acting fine so I didn't take her to the clinic for an early blood count. In the afternoon, we went to the library for a little bit and Molly really enjoyed looking at the books and just being in a different environment. We also stopped by the nail salon and Molly visited with my friend who owns this shop. She painted Molly's nails light blue (Molly's choice) with a little yellow daisy on each of her ring fingers. You would have thought that this was the greatest thing ever judging from the smile on her face. What a "girly girl" she is!

Tomorrow, Billy's and Molly's grandparents are coming up from Florida. The kids are so excited.

Until then...Take care and enjoy the day!

Love,
D,R,B and M.

Tuesday, August 3, 2004 10:15 PM CDT

Hi,

Today was a relatively quiet day. I did household chores and Molly played and rested. In the afternoon, we stopped by my parents' home and Molly did her usual activities there - smelled all of my mom's perfumes, played with her make-up, played the piano, and of course, picked vegetables and flowers from the yard with her "papa." She loves going to her grandparents' house. When Billy got home from camp, he finally agreed to do some reading and of course, he watched TV. By 5:30, Molly had fallen asleep for the night (much to our surprise) so when Roly got home, Billy and I jumped in the pool for an early evening swim. Molly seems to be OK, just a bit more tired than usual. If she seems "off" at all, I plan to run her into the clinic for a blood count because I am scheduled to work at the CSE in Baldwin on Thursday and with our luck, that will be the day that she needs blood products or medication. I am trying to be optimistic though.

Until tomorrow....

D,R,B and M.

P.S. We have great news about our friend Zoe. She is finally home from the transplant unit and she is doing well. Hooray!!

Monday, August 2, 2004 9:29 PM CDT

Hello again,

My darling daughter and I began our day early today. We went to the clinic and Molly's counts, though not the greatest, were good enough to stall a red cell transfusion. We were very happy to hear that. Unfortunately, her counts are all rather "borderline" and the impact of the intrathecal methotrexate she received last Wednesday has yet to hit. It takes about 7 to 10 days after receiving the spinal chemo to have your bone marrow compromised. What all of that means is that since Molly's counts aren't too high to begin with now, they are likely to drop quite a bit by the end of the week. We are scheduled to return to the clinic on Friday, unless Molly is symptomatic (behavioral changes, skin changes, even greater bruising, fever, etc.) before then.

When we got home today, we rested a little (as Molly was quite tired from her busy weekend) and "recharged our batteries." We were all ready for Billy when he got home from camp. Because it was so hot and humid here today, we decided to go swimming and a few of the neighborhood kids joined us. It was actually refreshing and a fun time. Molly really loves the pool.

That is all of the news for how. Until tomorrow.....

Love,
D,R,B and M.

Sunday, August 1, 2004 10:40 PM CDT

Hi again,

Well, the steroids have certainly kicked in. Molly is again eating up a storm (mostly pepperoni and salami these days) and she is rather moody to say the least. She can go from being totally delightful to a beast within a few seconds. Thank God today is the last day of the decadron.

Molly seemed a little tired today but that didn't stop her from attending a friend's child's birthday party in the yard. She swam in their pool and played and had a great time. Our friends from Rochester returned home tonight and we are all missing them so much already. Billy almost cried a few times tonight as he came out of his room to tell me how he missed Matthew and Caroline and doesn't think he can sleep without them! I miss them too and hope we can visit again in the very near future.

Tomorrow, Molly goes to the clinic for a checkup and blood counts. We are keeping our fingers crossed tightly that her hemoglobin has come up enough to avoid another blood transfusion. We'll let you know what happens.

Love,
D,R,B and M.

Saturday, July 31, 2004 11:39 PM CDT

Hi there,

Today both Molly and Billy had a lot of fun playing with our friends from Rochester, NY. Despite the cold water temperature, the kids insisted on swimming in the pool and that meant that Mommy got to go in too. It was freezing at first but we all had fun. Molly ran around quite a bit and ate a ton of pepperoni and salami. I think the chemo has her craving salt like crazy. She seemed very tired by the end of the day and her complexion looked kind of pale and yellow. I hope her hemoglobin hasn't dropped too much. We go back on Monday to have it checked but if she doesn't seem "right" tomorrow, I may have to take her in to the ER for a count and evaluation.

Wish us luck.

Love,
D,R,B and M.

Friday, July 30, 2004 11:29 PM CDT

Hi there,

Well, for the 3rd time this week, we took the trip to Schneider's to have Molly's blood counts evaluated. Today, her platelets dropped by another 20,000. Even though they don't usually transfuse unless the individual is below 20,000, Molly received a platelet transfusion because her counts were dropping so much and so consistently each day. Her actual count was 40,000 but with the weekend coming and the fact that she just received intrathecal methotrexate, the doctors believed that Molly was better off receiving the blood than not. So, by the time all of the "prep" work was done, our "short" clinic visit turned into an all day affair. As usual, Molly was terrific through it all. Unfortunately, the low platelet count was not Molly's only low count. Her hemoglobin was down to 8.8 and the doctor told us to be prepared to stay a while on Monday (when we go back) in case Molly requires a red cell transfusion.

On a happier note, our friends from Rochester arrived safe and sound. Billy and Molly are thrilled to be having a "sleepover" this weekend. There is much anticipation about going in the pool tomorrow.

Take care everyone,

D,R,B and M.

Thursday, July 29, 2004 10:24 PM CDT

Hi again,

Today Molly's Mom is tired! I had the genuine pleasure of working at my school district for the day today. I sat on the Committee for Special Education as the psychologist and it felt great to think about something other than leukemia for a change. After a full day at school, I came home and took the kids to Schneider's where there was a party for all of the Hem-Onc patients. It was funded and put on by the Sarah Grace Foundation (www.thesarahgracefoundation.org). This organization is doing many things to help children and their families as they battle with cancer. At this party, there was a DJ, magician, food and lots of fun for the children. Billy had as much fun as Molly. During a good portion of the party, I sat with another mom and we spoke to the parents of a child who was just newly diagnosed with leukemia. We tried to support and encourage the mom and dad, but it is just so hard, especially in the beginning when the treatment is so intense and toxic. Their little boy's name is Tyler. Please remember him and his family in your prayers.

Tomorrow I need to bring Molly back to the hospital yet again for another check of her blood counts. I think I will just program the car and put it on autopilot so that it can get us there and back without too much effort on my part. Let's hope that her platelet count is better. She is beginning to look like an abused child with all of the bruises on her body!

On a happier note, my friend Lisa and her family are coming for the weekend to visit. Lisa is Molly's godmother and one of my very dearest friends. A visit from her family is a very welcome thing! Everyone gets along so well with each other. Let's also hope that Molly, who is now "steroidal" isn't too difficult over the weekend!

Until tomorrow....

Love,
D,R,B and M.

Wednesday, July 28, 2004 10:13 PM CDT

Hello,

Our day began very early today. Molly and I left the house before 7 am to be at the hospital by 7:30 so that she could have her lab work done and receive her intrathecal chemo. Her blood work showed that her counts are dropping all around, including her platelets, which are now down in the low 60,000 range. They don't transfuse platelets unless they are less than 50,000 when doing a procedure or less than 20,000 when no procedures are required. So, despite the lower counts, Molly received anesthesia and had the spinal tap and intrathecal methotrexate. She also received IV Vincristine and started back on steroids, namely decadron. Her oral chemo, 6MP, needed to be halved for the next week due to the low platelet count. Molly will go back to the hospital on Friday for another count and quick checkup. She handled it all so beautifully, as she always does. She told Roly this morning that she is "a very brave girl" and that she is.

After we got out of the hospital, Molly wanted to see my parents who were in Florida for my brother's wedding and just got home. She was so happy to see them both. They brought her a REAL make-up kit, that was just chock full of make-up. One could say that Christmas came a little early again for Molly! She played in my mom's jewelry box and just had a great time with the grandparents.

On our way home from my parents, we stopped at a friend's home to drop off some prizes that were donated for the raffle to be held at Molly's fundraiser. The woman who put this fundraiser together is an absolutely wonderful person who almost lost her own child to a life threatening illness. Her son went through so much, much more than any child should ever have to bear. Remarkably, Johnny is still with us and he is an amazing and resilient boy. He has many issues that he will have to deal with for the rest of his life as a result of his illness, including the loss of both of his legs, which had to be amputated below the knee. Johnny's mom is working with a team of incredibly compassionate people to help Molly. We are so overwhelmed by what she and so many others have done that we don't even know where to begin to thank them. Despite the real horror of having a child with cancer, the kindness and generosity it evokes in others can literally restore your faith in humanity and so much more.

Well, that's it for now. Until tomorrow....

We love you all,
D,R,B and Molly, The Brave.

Tuesday, July 27, 2004 9:51 PM CDT

Hello again,

Today Molly and I went to the clinic. Her checkup was fine and most of her blood counts were OK, except her platelets, which were still borderline. In fact, she has quite a few bruises on her from doing things that would not normally leave a bruise, like a minor bump of her forehead. Due to a scheduling mix-up and a few other factors, Molly needs to go back to the clinic tomorrow for intrathecal (spinal) chemo instead of on Friday, providing that her platelets don't drop any more. Her doctor assured me that doing this procedure a few days early is not detrimental to Molly. She will also receive IV chemo (vincristine) and start again on steroids for 5 days. Because she needs anesthesia for the spinal procedure, she cannot eat or drink after midnight so tomorrow morning should be oh so pleasant.

Will let you know how it all goes.

Love,
D,R,B and M.

Monday, July 26, 2004 10:24 PM CDT

Hello to all,

Today it was so great to be able to hug and kiss Molly again after missing her so much over the weekend! She was so happy to receive her Barbie pretend make up kit that Billy and I brought her. She played with it for quite some time today. In the afternoon, we went to the park with some friends and Molly had a blast. She especially loved the swings and acting out the story of the 3 Little Pigs!

Tomorrow we go to the clinic for a count of her blood and a check up. Last week, her platelets were a little low. I noticed some bruising on her today so I'm curious to see what the count is tomorrow.

Will keep you all posted!

Love,
D,R,B and M.

Sunday, July 25, 2004 9:42 PM CDT

Hi there,

Billy and I are back home in NY. It was great to get away and visit with our family and attend my brother's wedding. Still, we are happy to be home. Because of weather delays, our flight got in late and Molly was sound asleep by the time we walked in the door. I still kissed her 100 times and she looks good. Daddy did a good job keeping her happy, safe and sound!!

I can't wait to play with her tomorrow. Time to get Billy in bed because he has camp tomorrow.

Love,
D,R,B and M.

Saturday, July 24, 2004 10:20 PM CDT

Hi,

Well, today my youngest brother got married to a wonderful woman named Crystal. It was a beautiful wedding and we wish them every happiness life has to offer. Billy was so cute carrying the rings along with Crystal's 2 nephews. I'm glad we were able to come.

As for Molly, she is having a nice weekend at home with her dad. I spoke to her earlier and she told me that she was "angry" at me because I went away without her. Apparently, some "Tinkerbell make-up" might set the record straight again. Billy and I go home tomorrow in the afternoon. We hope to hit the beach for a short time in the morning. Wish us a safe flight home!

Love,
D,R,B and M.

Saturday, July 24, 2004 9:35 AM CDT

Hi to everyone,

I am writing to you from Florida. Boy, is it hot here! At least it is sunny for right now. Billy and I got here yesterday after quite a turbulant flight. We rushed off to the tuxedo shop and then the rehearsal dinner and slept in a little this morning. In a few moments, we need to begin getting ready for my brother's wedding.

Miss Molly is doing just fine in NY with her dad. I have talked to her a bunch of times already and she seems to be enjoying all of daddy's attention! Even though I am missing her, everyone asks about her so much that she is always on my mind! Aunt Sue and Uncle Eddie will be making a visit to Roly and Molly some time over the weekend and hopefully, the "kids" will be able to enjoy the pool for a little bit.

Will keep you posted!

With love,
D,R,B and M.

Thursday, July 22, 2004 10:36 PM CDT

Hello again,

Molly had a fairly good day. Despite the 3 hour wait to be seen by the doctor today, she was cheerful and happy to be at the clinic. She enjoyed playing with the Child Life Specialists and seeing some of the children. She had an "OK" checkup. Her counts are a little on the low side and if her platelets in particular don't come up by Tuesday, then her next round of chemotherapy will have to be reduced by 50 percent which is not really something we want so please say a prayer that her bone marrow does what it needs to do. I had kind of fooled myself into thinking that we were on the "once a week" plan now that we are on maintenance but next week, we'll be there at least 2 times so.....so much for the weekly plan!

Tomorrow morning, Billy and I will leave for Florida to attend my brother's wedding. Billy will be one of the ring bearers and he is so excited. I am so nervous about leaving Molly. It's almost midnight and I'm still not completely packed. I'm sure that once I'm there it will be fine but the anticipation is just difficult to deal with.

We'll be in touch. We want to send out a special thank you to friends who dropped off some great dress up clothes for Molly yesterday. She has been walking around in her pink boa and crown all evening. Billy also loved his special cookie and yo-yo!

OK, goodnight for now.

Love,
D,R,B and Molly, the glamour girl.

Wednesday, July 21, 2004 10:32 PM CDT

Hello,

Today Molly and I visited Grandma and Grandpa at their home in Island Park. Molly helped her "papa" pick some tomatoes and cucumbers. She just LOVES picking the vegetables! Then she roped the grandparents into dancing around the kitchen to a CD soundtrack from the Wizard of Oz. She smelled every perfume bottle my mom has and played with her lotions and creams. She told my dad that one of them had a "lovely fragrance"! She is just too much!! Molly and her grandparents enjoyed visiting while I ran a couple of errands. She fell asleep on the way home which gave Billy and I some alone time to play Pokemon Monopoly (which Billy won).

I still have packing to do for our weekend trip to Florida. I'm starting to get very anxious about leaving Molly. I know she's in very capable hands with her dad but I am just going to miss her so much!! Tomorrow we go to the clinic in the morning for a check up and blood counts. We'll keep you posted.

With love,
D,R,B and Farmer Molly

Tuesday, July 20, 2004 10:19 PM CDT

Hello to all,

Well, today turned out to be a much better day for me and another fine day for Molly. I had hurt my back carrying Molly during a temper tantrum she had last Friday. Yesterday, it was killing me. After some medication and a couple of visits to the chiropractor, it is much better. Molly was happy to see Mommy at the doctor this morning instead of it being her as the patient. After the chiropractor, we visited with our friend Sheila and took a swim in her pool. Feisty Miss Molly did not cooperate when it was time to dry off and get dressed. She threw the dry towels in the pool and fought with me about sitting in time out after that. Boy, am I in trouble when the adolescent years hit! She eventually figured out that it was in her best interest to comply and she finally listened and cooperated. After, she played nicely at home. The highlight of her afternoon is when Billy's bus pulls up from camp. She literally jumps up and down with excitement when "her Billy" comes home.

This evening, it was a "Parents Night Out." Roly and I joined some other parents from the Morgan Center for a Long Island Ducks (baseball) game. We sat in the "Vytra" suite, as they are a sponsor of the Morgan Center. How nice that was! Waitress service, cold drinks, good food, great company and best of all, a night to relax and enjoy among other adults who really understand what we are going through. It was great.

OK, time to say goodnight and to get ready for another busy day tomorrow.

With love,
D,R,B and M.

Monday, July 19, 2004 11:30 PM CDT

Hi everyone,

Today was a fine day for Molly but a crazy and stressful one for her mom. It was just one of those days when everything just seems to go wrong (though thankfully, nothing major). Let's just say that I'm glad it's almost over and I'm hoping that tomorrow will be a better day.

Molly continues to feel well overall. She is eating so much these days. Billy is loving camp. He is eager to return to Florida to see his cousins and take part in my brother's wedding. He is very excited to carry the rings during the ceremony.

Well, that's all folks for now. As they say on the Weekend Update on Saturday Night Live, "Goodnight and have a pleasant tomorrow".

Love to you all,
D,R,B and M.

Sunday, July 18, 2004 8:40 PM CDT

Hi again,

Today was a basically good day despite the rain. Billy played at home and rested up after a busy week and Molly did the same. She has been eating well and seems to be feeling well and that makes all of us feel so much better. Life is slowly starting to seem just a drop less surreal, though there are certainly still surreal moments.

I made the decision to fly to Florida on Friday with Billy for my brother, George's wedding. As much as I want to go, I have a knot in my stomach with the thought of leaving Molly even for only a couple of days. I know that she will be more than fine with her dad but it is still hard to be away. On the other hand, I know that it will be nice to spend some special time just with Billy. Please keep us in your prayers that Molly stays well and that we have a safe trip.

Talk to you tomorrow.

Love,
D,R,B and M.

Saturday, July 17, 2004 9:19 PM CDT

Hi again,

Today was another fun day for all of us. We enjoyed the sunshine and went swimming in our pool. Molly really loves the water. I think she is part fish. After, I took Molly around the corner to the local nail salon. We had our first mother-daughter manicure. She sat still and was so good. She was SOOO happy to be getting her nails done. She picked out a sparkly royal blue nail polish and couldn't be persuaded away from that but it looks adorable on her. The manicurist painted a little flower with a tiny rhinestone on each of her ring fingers. She was thrilled.

Tonight, we all went to see a Long Island Ducks baseball game. We went with a large group of friends and it was really very fun. Molly tortured the poor guy dressed up in the duck costume (Quackerjack is his name!) She just loved him and visited him no less than half a dozen times. The Ducks lost but it was still a good time.

Incidentally, Molly WAS in the New York Times again. There was a very large photo of her and Darryl Strawberry in the sports section. Molly was mentioned at the end of the article. It's not the most flattering picture of her, as she looks fairly sick in it but it was still nice to see.

Friday, July 16, 2004 10:50 PM CDT

Hi there,

What a day Molly had today. It started off with our clinic appointment this morning. Much to our surprise, Darryl Strawberry was there signing baseballs and gloves for all of the children. It was very crowded and there was a frenzy in the air. Molly didn't really understand what was going on but she really liked the crazy atmosphere and charmed Mr. Strawberry. She even got him to play with her for a little bit. There were lots of news reporters there. Perhaps she'll make the paper tomorrow. She made both News 12 and News 55 on Long Island, at least for a bit of the segments. Her checkup was fine and her counts were good. Her ANC was a little over 1,000 which is fine for this particular point in her chemo protocol. She's scheduled to go back next week for another checkup, blood work, etc.

Later in the day, we went to the Long Island Jell-O Jump out in Huntington. Basically, you slide into a pool of red Jell-O (gross!) and you get sponsors in order to do this. Molly slid down on Sarah's lap and she had a ball! (Sarah is one the Child Life Workers at the hospital and Molly ADORES her!) It was a great deal of fun. We saw a lot of families from the hospital there and it was nice to be doing something happy together, away from the hospital. In order to rinse off, fire trucks set up spray hoses and Molly had so much fun running around in the water. She threw quite the tantrum when it was time to get out. Overall, it was a really nice day.

Until tomorrow....

Love,
D,R,B and Molly, the Jello-Jumping Princess.

Thursday, July 15, 2004 9:55 PM CDT

Hi there,

Another relatively quiet day at home. Molly watched way too much TV today. She was a little sleepy and needed to rest up. Tomorrow we go to the clinic for her blood counts and a check-up. Hopefully, her mediport will not need to be accessed, which will be a good thing for Molly, as she is understandably not too fond of the needle pricks.

Billy continues to enjoy camp. His friends from school, Michael and Nicholas, stopped by when he got home from camp. The boys took a dip in the pool and had a water gun war. For me, it was nice to visit with their mom.

Wish us luck at the hospital tomorrow!!

Love,
D,R,B and M.

Wednesday, July 14, 2004 9:55 PM CDT

Hello,

Another rather rainy day but that's OK with us. I continued on "Mission Organization" while Molly continued on her own mission, "Sabotage Mom's Efforts." One nice thing was that we took a trip to the toy store to pick up a couple of birthday gifts. After "disinfecting" the shopping cart with Clorox wipes, Molly and I strolled down the aisles. Her eyes were like saucers. I don't think she remembered what the inside of a toy store looks like, since she hadn't been in one in about a year. Well, that's not true exactly. She lives in her own toy store...the one that is within the walls of our home...but as for an "outside" toy store, it had been a while. She kept squealing, "Oh look at this!" Of course, we walked out with not only the birthday gifts but another new princess pocketbook complete with pretend make-up and a Barbie as Rapunzel DVD. In the afternoon, our friend, Christine appeared almost like magic. I had left her a message on her answering machine at home and coincidentally, she stopped by almost immediately after I hung up the phone. She and her family had just gotten back from Disney and she brought Molly a princess coloring book, which is already getting some use! It was great to see her. We hope to visit with her whole family soon.

Hope everyone is enjoying their summer!

Love,
D,R,B and M.

Tuesday, July 13, 2004 9:53 PM CDT

Hi there,

Another rainy day on Long Island. Today we celebrated my dad's birthday. Van and Ro's kids were over and we munched on pizza and birthday cake. Molly was so happy to have her cousins over to play with. She just loves dressing up with the girls while Billy and Katie enjoy challenging each other with the latest video game. Molly was happy today and seemed to be feeling really good. It seems a little weird, if you can imagine, not going to the clinic so often, since that is what we had become accustomed to. Don't get me wrong, we are thrilled to be going less often to the hospital but it's yet another adjustment in our daily lives and routines. We're figuring it out. Everything in time...

OK, let's hope for better weather tomorrow. Hoping everyone by you is well and happy.

Take care,

D,R,B and M.

Monday, July 12, 2004 9:22 PM CDT

Hi there,

Even the pouring rain would not get us down today!! Any rainy day at home is a million times better than the most beautiful day spent at the hospital!

Molly and I started our day with a walk with our friend, Sheila. We did some errands and hung around the house in the afternoon. Molly took a nice long nap and I got just a little caught up on a bunch of tasks that I have let go. I'm still somewhat overrun with papers and mail but hopefully, it will get under control very soon.

Billy went to camp and swam two times, despite the rain. He said that the water felt warmer today (probably because the air was so much cooler than it had been). He seems to be having a fun summer.

Roly is doing fine. He too is trying to get caught up on so many things that have just fallen by the wayside. Eventually....

Take care and stay well.

Love,
D,R,B and M.

Sunday, July 11, 2004 9:39 PM CDT

Hi there,

Today was another beautiful day. For the first time in a long time, Roly, Billy, Molly and I attended church together. We were so happy to be able to worship with my parents' congregation, as many people there have been praying like crazy for Molly and they were all so happy to see her. In the afternoon, our cousins from CT came for a barbeque. So did my brother Van and his family. The kids all had a lot of fun in the pool (as did the grown-ups)! I'm almost afraid to say it because I don't want to "jinx" anything, but it is beginning to feel a bit more like a "normal" routine. Even though there is lots of medication still every day, not having to run to the hospital every day and being able to do things like visit with family and friends makes us feel so much better. I am beginning to give serious consideration to working again in my private practice but I worry about another "crisis" interrupting that work. Hopefully, things will become even more stable and I will be able to work again very soon.

Many thanks to those of you who check in on us and those of you who leave messages of support and encouragement. It means a great deal.

With love,
D,R,B and our very own Little Mermaid, Molly

Saturday, July 10, 2004 10:44 PM CDT

Hello to everyone,

What a nice day we had today. Since Molly's counts were good, we were able to visit with Roly's cousins in New Jersey. We celebrated Roly's cousin's son's 2nd birthday. Molly had a ball running through the sprinkler and playing with some other children. It was nice to get caught up with the family and swap stories.

I think that Molly is looking better all of the time. Her hair is starting to come back a little and even though she is still pale, her color looks better too. (At least she no longer looks gray or yellow!) She's eating well and hasn't had any major stomach problems for a while now. We are thankful for every "good" day we have.

Tomorrow, some of my cousins from CT are planning on coming by for a visit. We are taking advantage of the high counts while they last but are still taking precautions and trying to keep the visits out in the fresh air.

For those of you who have asked, our friend Zoe is doing pretty well overall. She is in the bone marrow transplant unit now and will be there for several more weeks. She received her own stem cells on Tuesday and everything is going along as expected, though she has had fevers and side effects from the chemotherapy. She has a caringbridge webpage at www.caringbridge.org/ny/zoec.

Stay well and enjoy the day. Seize each good moment and savor it!

Love,
D,R,B and M.

Friday, July 9, 2004 9:03 PM CDT

Hi there,

Molly had a good day today, despite the fact that we spent most of our time in the clinic this morning and afternoon. She was seen by her doctor, who told us that her counts were good (ANC was over 5,000 thanks to the dexamethasone) and that the bone marrow test she had last week was clear, even on a genetic level. She received IV preventative antibiotics and procrit today. Tonight she will take methotrexate by mouth for the first time but we are not expecting any unusual side effects. Her energy was good as was her appetite.

I was able to visit with my colleagues from the psychology department in Baldwin this afternoon. The chief psychologist had a get together and I was able to stop by for a while, which was really nice.

It's supposed to be a beautiful weekend. Let's hope that the weather man is right!!

Love,
D,R,B and M.

P.S. Please keep a little boy named Sean in your prayers. He is a friend from the hospital and he has an inoperable brain tumor. He is receiving hospice care at home now and is in a partial coma. His parents don't expect that he will be with us much longer. Please pray that the family has the strength to get through this most difficult time. Thank you.

Thursday, July 8, 2004 9:11 PM CDT

Hello again,

Today was a really nice day, though very hot and humid on Long Island. Molly and I each had a "play date". Molly's friend, Eric, from Schneider's and the Morgan Center came over with his mom. A few of my other girlfriends came over too and we had a lot of laughs over a nice lunch. Ironically, Eric was diagnosed the very same night in the ER along with Molly. We later found out how unusual it was to have two kids with the same presentation, same diagnosis, same age, etc. be diagnosed at the same time on the same evening. Molly and Eric are on the same treatment protocol and they have been hand in hand the whole way. His mom and I say that at the very least, they each have a prom date at some time in the future!!

Molly seems to be feeling OK. Her appetite is basically good, though these days she has been relying on pepperoni as a main source of nutrition. Steroids can do some wacky things to a person's eating habits! Tomorrow we go to the clinic for a check up and blood work. We will find out how to dose the oral methotrexate that Molly will begin taking tomorrow evening. I'm curious to see what her hemoglobin is at, as she has been complaining of being tired. She may be due for prophylactic antibiotics (pentamidine) too.

I also just wanted to say a big THANK YOU again to those of you who have been so kind and generous to us. Your words are comforting, your caring is so touching, your prayers are needed and your generosity is overwhelming. Today, Molly (and Billy) received a few "surprises" in the mail. Molly said that it must be her birthday because she got some presents!! She was so happy with her treats, as was Billy. Thank you all so much for everything you have been doing.

With much love,
D,R,B and M.

Wednesday, July 7, 2004 10:53 PM CDT

Hi again,

Today turned out to be a much better day for little Miss Molly. Her mood was better and she seemed happy for the most part, though still a bit tired. She loves going outside for walks in her stroller so we did that a few times. It was hard to say goodbye to grandma. Molly kept thinking that she was going on the plane with grandma. She fell asleep in the car on the way to the airport and was really mad when she woke up to find out that grandma left without her but I think she understands a little more now.

Molly was really happy when Billy came home from camp. They "tortured" each other for a while and then we went out to play for a bit. Billy and I had a "fight" with the garden hose. I won but he had a lot of fun getting soaked. And to think, we have a beautiful pool and we are running around with the hose!!

Tomorrow we have plans to see a friend, Eric, from the Morgan Center. Molly is really looking forward to that and I am looking forward to it too.

Love,
D,R,B and M.

Tuesday, July 6, 2004 8:43 PM CDT

Hi there,

Today Molly was very tired and cranky. I'm not too sure why but she just didn't seem to be herself. She took a few naps and that is also not really like her. We're hoping that she is just a bit overtired. Even though she is on maintenance, she still is taking chemotherapy everyday, at least orally if not in other modalities so perhaps her body is just trying to adjust to it all. She did not feel warm or feverish today so we'll just keep a close watch this evening.

As for the rest of us, we are fine. Roly and I celebrated 13 years of marriage (many thanks to those of you who sent good wishes). Billy had a great day at camp and Grandma Nora is preparing to return to Florida tomorrow. She will be back however next month so at least the kids will see her again soon. When she comes, she'll be bringing Grandpa Rolando with her so that will be another treat.

Until tomorrow....

Love,
D,R,B and M.

Monday, July 5, 2004 10:12 PM CDT

Hi again,

Today was a good day at home with the family. We did some yard work, went for a swim and watched the movie, "Miracle," which was just great. It's about the 1980 US Olympic hockey team and how they won the gold medal that year.

Molly seems to be doing well overall. She appears to be tolerating this round of chemo fairly well. She has asked for Zofran (an anti-naseau medication) a few times but hasn't vomited much. In fact, because she's back on steroids, she's had a decent appetite, though nothing like her appetite previously when she was on a higher dose of dexamethasone.

Tomorrow is our 13th wedding anniversary but Roly and I are together 19 years. We're hoping for a calm day and plan to watch a little of our wedding video with the kids.

Many thanks to all of you who have been "checking in" on us and who have left us messages of support and love. We so appreciate it.

Love,
D,R,B and M

Sunday, July 4, 2004 6:56 PM CDT

Happy 4th of July to one and all!

Another fairly good day for Molly. Today, she received a visit from her teacher at the Morgan Center, Miss Nancy. "Miss" Nancy came with her family, Rod, Trevor and Morgan. Trevor and Billy played while Molly and Morgan put on a new lipstick that Morgan brought over. Nothing could have made Molly happier than that.

A little later, we all walked around the corner to our neighbor's house for a 4th of July party. It was outside and spread out so we brought Molly for a little bit. She was so happy to be there. This neighbor, "Miss" Joy also teaches at the Morgan Center so it was a reunion of sorts and good fun. Shortly into the party, I took Billy over to our friend's, Sheila's home. Sheila and her family took Billy to see the Long Island Ducks game. After the game, there are fireworks scheduled so that should be really terrific.

As for the rest of us, Molly got a little tired so we came home for a rest. If she is still awake in about an hour, there will be a fireworks display at the party so perhaps we'll walk back around the corner to watch it.

We hope you all had a great day today. God Bless you all and God Bless America.

With love,
D,R,B and M.

Saturday, July 3, 2004 10:47 PM CDT

Hello to everyone,

Today was a really nice day on Long Island. Billy, Roly, Uncle Eddie and Billy's friend Matthew went to the Mets/Yankee game. Too bad the Yanks lost!! Better luck tomorrow! The boys had a great time. They went with the Luke Neuhedel Foundation, which is a foundation whose mission it is to improve the quality of life of pediatric cancer patients. Luke lost his battle with cancer at a very young age and this is how his family honors his memory and brings joy to so many others. Really, we wanted to all go with Molly but her ANC wasn't high enough.

Well, Molly was NOT happy to say goodbye to her dad and "her Billy" this morning. The only way to appease her was to bring her into the pool in our yard. It turned out to be warmer than expected (since we don't have a heater). Molly LOVED the water. She is a daredevil, jumping in from the steps and trying to swim all on her own. (Of course, her bathing suit had lots of flotation cushioning built right in). There are some new photos in the photo section where you can see her in action. When the boys got home, they were hot so they jumped right in with Molly for a fun swim.

Today, Molly seemed to feel good. She seems to be tolerating the chemo she has been given. Her legs seem a little shaky on the steps again, perhaps because of the vincristine she just received. We will continue to watch her.

Here's hoping that your 4th of July celebration is what you want it to be. Have fun and stay safe!!

Love,
D,R,B and Molly, future Olympian of some water sport.

Friday, July 2, 2004 9:26 PM CDT

Hello there,

Well, Molly was finally able to get back on her treatment protocol! Her ANC was up (a little over 1000) and she received intrathecal (spinal) methotrexate along with IV chemo (vincristine). She also started back on steroids (dexamethasone) for 5 days and a host of other oral medications. The doctor also ordered another bone marrow test just to assess the current state of her marrow. Although she received a hefty dose of medication today, she didn't let it slow her down. She wasn't out of anesthesia for 30 minutes before she was asking to go to the cafeteria for a hot dog, french fries and a pickle. Of course, I accommodated her request. She only napped briefly when we got home. As I write this, it almost 11 pm and she is still awake. Go figure. Sometimes I wish I had half of her energy.

We had plans for all of us to go to Shea Stadium tomorrow to watch the Yankee/Met game. Unfortunately, the doctors were a little hesitant to let Molly attend. Even though her ANC is much improved, it's still not at the greatest number to avoid illness. Also, sitting in the sun won't be easy for her. So, Roly will take Billy along with a friend of Billy's from camp and Uncle Eddie. I wish I could go!!
Oh well, I guess I'll just have to tune in to the "YES" network and watch it on TV.

Until tomorrow....

Love,
D,R,B and M.

Thursday, July 1, 2004 10:45 PM CDT

Hi there,

Sorry for the "late" journal entry...we were glued to the Yankee/Red Sox game (which the Yankees eventually won in the 13th inning!) It was as exciting as a post-season game. Even Molly was still up watching it past 11pm!!

Today, we continued our "cleaning up" efforts and Molly was a big "helper". For those of you wondering, the "helper" comment is intended to be read with the greatest amount of sarcasm you can muster up. For a while, whatever we did to clean up, she immediately un-did. What a character. She was tired earlier today and finally gave in to a nap, which was good not only for Molly but for me too. She seems to be eating and drinking a good amount and her rash seemed a little better to me today.

Tomorrow, we go bright and early again to the clinic to see if Molly can get her chemo or if she will have a bone marrow test. We really want her to get back on track with the treatment so keep your fingers crossed.

Our friends, the Rosenbergs, are in Disney right now with another family that we are friendly with. They called from the parade tonight. How I wish we could be there with them instead of here doing this. But not too long ago, the Rosenbergs were taking care of their daughter, Jenna, who is now recovered from her battle with leukemia. Hearing from them always reminds me of the light at the end of the tunnel. Perhaps when we're all done we can persuade our friends to go back to Disney, this time to explore the parks with us!

OK, time to say goodnight. If you can, tune in to the Yankee/Mets game tomorrow and be sure to cheer for the Yankees!!

Love,
D,R,B and M.

Wednesday, June 30, 2004 9:28 PM CDT

Hello,

Today, we stayed home and did boring things like straighten up the house. Molly seemed OK for most of the day. She had a few very cranky moments but most of the day was happy for her. She was thrilled to see her daddy, as he had been away last night on a business trip. Aunt Sue and Uncle Eddie came for a visit and that was a lot of fun for both Billy and Molly. Molly still seems to be breaking out in this sporadic rash, which the doctor thinks is likely some type of virus. He didn't seem too concerned but we are watching it.

That's the news for now.

Love,
D,R,B and M.

Tuesday, June 29, 2004 8:05 PM CDT

Hi again,

Today, Molly and I started our day off bright and early. We went to Schneider's at 7:30 am. Unfortunately, once again Molly's blood counts were too low to receive chemotherapy. However, the ANC was somewhat improved. Today, her ANC was at 238, compared to 98 on Friday. She needs to be at 750 in order to get her medication. Her other blood counts were still good, so the doctor decided to hold off on the bone marrow test until Friday. Hopefully, by then, she will be recovered enough to get back on the treatment protocol. Her mood was good and she was quite active today. She flirted with the doctor, which always cracks us all up. She had a new dress on today and as she entered the room, she held it out by the sides and said in a sing-song voice, "Oh Doctor, look at my new dress!" She's just too much!

Billy continues to enjoy camp. We can't believe that it's almost July. Where does the time go?

Hope you all have a great day.

Love,
D,R,B and M.

Monday, June 28, 2004 8:22 PM CDT

Hi there,

Today was an "interesting" day. The weather was nice and Molly wanted to get outside so into the stroller she went and we walked to the local library. Molly enjoyed the trip. We played at home after but she's getting a bit tired of her mom and she spent a good portion of the afternoon crying for her father. In order to distract her a bit, we went for a walk outside after dinner. She decided to run after Billy, fell and skinned her knees. This is normally not a big deal but I had to run in and check her platelet count, which was fine. The bleeding eventually stopped and we got her cleaned up but she cried for a while some more. Basically, there was a lot of crying going on today for Molly.

On a different note, Billy started camp today. He was happy to see some old friends and to make some new ones. One of his teammates from little league was on his bus and that made him very happy. He swam, played baseball, did arts and crafts, etc. It sounds like it will be a good summer for Billy.

Tomorrow we head back to the hospital either to begin maintanence or to have another bone marrow test, depending upon Molly's blood counts. We're hoping the ANC is up and things get back on track. Molly also seems to be breaking out in this pimply rash so we'll have to see what that is about. We'll let you know.

Love,
D,R,B and M.

P.S. For those of you who were asking about our friend Zoe, she has a webpage at www.caringbridge.org/ny/zoec which you can check if you are so inclined.

Sunday, June 27, 2004 7:54 PM CDT

Hi there,

Today, Molly was busy playing and being a typical 3-year-old child. She had her good moments and some tantrums too. That's always so pleasant (not!) She seems to be feeling OK. She went out for a stroller ride today and fell asleep for a nice nap. Billy starts camp tomorrow and he is excited. He is going to day camp not far from our home and he will be seeing some old friends there.

On a different note, our friend from the hospital, Zoe, is now inpatient in the stem cell transplant unit. She is doing very well and has started her chemo in preparation to receive her own previously harvested stem cells. She has Wilms' Tumor, a cancer of the kidney but is expected to do well. Please remember her in your prayers over the next 6 weeks, as it will be tough for her and her family.

With love,
D,R,B and M.

Saturday, June 26, 2004 7:40 PM CDT

Hi to all,

Today was a fairly good day for Molly. She has been loving spending time with her grandmother. She and grandma made matzo ball soup (what else?) and that was fun for them. Molly seems to be feeling OK. Not much else to report today. That's the way we like it...a little on the "boring" side.

Until tomorrow...

Love,
D,R,B and M.

Friday, June 25, 2004 3:43 PM CDT

Hi there,

Well, so much for beginning maintenance. Unfortunately, Molly's ANC bottomed out again and it is back down to 98. It seems that when she gets the GCSF (drug that stimulates the neutrophils, which raises the ANC), her marrow is responsive but it is not yet able to hold the higher count on its own. She can't receive more chemo until her marrow is all right without the GCSF. So, we go back on Tuesday and will see what is going on then. If her counts are high, then she'll get the chemo and if not, she will probably have a bone marrow test just to see what is going on. The doctors don't expect any "funky" results as her other blood counts (hemoglobin = 12 and platelets = 400,000) seem to be good. It's a bit frustrating because she has been neutropenic for so long. She is rather susceptible to infections now so we are really, really hoping that she doesn't get a fever or get sick or else.... Anyway, we're hoping for good counts on Tuesday.

We'll keep you posted.

Love,
D,R,B and M.

Thursday, June 24, 2004 10:27 PM CDT

Hi there,

Today seems to have been a much better day for Molly. She spent the day playing with Grandma Nora and the two of them had a lot of fun. Billy and I had a special day to ourselves. We ran a bunch of errands, visited his school (some of his friends are there going to a "mini-camp" program), visited my school, and saw my co-workers and friends, all of whom have been incredibly supportive during the year. I was very lucky to see some of the Baldwin Middle School graduates and I'm so happy that I had a chance to say good-bye to some very special kids. Billy and I also got to go to a local store that carries all kinds of Yu-Gi Oh products, so of course, Billy was thrilled.

Tomorrow, we head to the hospital early in the morning. Molly has intrathecal chemo (spinal) scheduled, if her blood counts remain high. We're hoping that she will begin the maintenance phase of her protocol. We'll let you know what happens.

Until tomorrow....

Love,
D,R,B and M.

Wednesday, June 23, 2004 8:16 PM CDT

Hi there,

Today was....well, not the greatest day as far as Molly's disposition goes. We went to the clinic and Molly's counts were up, which is very good news. Her ANC was about 760 and she needs to be at 750 by Friday in order to receive her chemotherapy, which includes intrathecal methotrexate, vincristine and a bunch of other medications. We'll see if the numbers "hold." Hopefully, they will. Although her counts were better, she was incredibly CRANKY today. She whined and cried and screamed at just about everything. How I hope that she is not getting sick. I would say that her mood was equal to a person's worst PMS day. For any of you that have some influence with the "Big Guy" upstairs, please say a prayer that her mood is better and that she is feeling better.

Until tomorrow...

We love you,

Tuesday, June 22, 2004 10:05 PM CDT

Hi again,

Molly had a relatively quiet day today. She just loves being in her nightgown so that's what she wore for most of the day. I think it makes her feel safe because when I tell her that she needs to get dressed, she asks, "Why? Where are we going"? If she's in PJ's all day, then there are no doctor visits to be concerned with.

Tomorrow we go back to the clinic to see how Molly's blood counts are. We're hoping that her ANC is high enough to recceive the chemo she is scheduled for on Friday.

Billy and Grandma Nora arrived safely in New York tonight. I didn't really realize how much I missed Billy until I saw him. Boy, does he look great. He said he had a wonderful time and I'm looking forward to watching the video tape his grandmother took. Molly was SO, SO, SO HAPPY to see both of them.

Until tomorrow...
D,R,B and M.

Monday, June 21, 2004 8:56 PM CDT

Hi there,

Today we went to the clinic in the morning and saw our doctor. Molly's blood test results indicated that her ANC is too low to start on the maintenance chemo. She needs to be at 750 but today, the ANC was back down in the low 200's. So, Molly received another injection of neupogen and we will return to the clinic on Wednesday to see if she is doing any better. Her other blood counts were pretty good, as her platelets were up and so was her hemoglobin. She has lost a bit of weight, presumably from not eating or drinking too well but that is likely owing to the neutropenic state she is in (that just means that if her ANC is low the way it is, she is considered to be "neutropenic" and more susceptible to infections).

Tomorrow, Billy returns home. Hooray!! We missed him so much and can't wait to have him back. Grandma Nora will be coming with him and Molly is thrilled about that.

Until tomorrow,

D,R,B and M.

Sunday, June 20, 2004 8:11 PM CDT

Hello again,

We hope everyone has had a very Happy Father's Day. We certainly did, although we missed Billy today, as he is still in Florida with his grandparents and cousins. He is scheduled to come home on Tuesday and we all can't wait, including Molly!

Today, Molly was cheerful and seemed to feel well. She ate a bit more and did not vomit at all. In the afternoon, we went to my brother Van's home and spent some time with my parents, Van's family and my sister-in-law, Roseanne's family. Molly was SO HAPPY to be with her cousins, Katie, Emily and Sophia. They played so nicely together and the little ones put on their own little dance recital for us, as Van's player piano played a medley of Disney tunes.

Tomorrow we head back to the clinic in the morning. If all is well, Molly will "officially" begin the maintenance phase of her chemo protocol on Tues. We shall see.

Stay well and enjoy the day.

Love,
D,R,B and M.

Saturday, June 19, 2004 9:01 PM CDT

Hello to all,

Today was an overall good day for Molly. She got up early (as usual) and was happy to be up and playing. She ate breakfast and was able to keep it down without vomiting, so that was good. In the afternoon, we went to my parents' home and Molly just LOVED that. It's a treat for her to get out of the house and have a change of scenery. She has been asking to go to school, but that is over until September. I know she will miss it very much (and I will too)! During most of the day, Molly was still not eating or drinking too much. She ate a good dinner but then threw it right up. That is always a concern for me. We hope and pray that each day gets better and better.

As for Billy, he got to visit with my brother George and his fiancee, Crystal. They took Billy and his cousin Bryan to a place where they could ride go-carts and play all kinds of arcade type games. It sounded like he was having a lot of fun.

And for those of you interested in the latest opossum installment...we haven't heard them for a few days. The entrance (hole) in the eaves was covered with paper (which they could easily go through) and the paper has been intact, which suggests that they might have left. We're hoping so. Roly cut down the tree branches that led to the roof, so hopefully, it won't be so easy to access now. We're keeping our fingers crossed that we are once again living in a "single family" home (ours)!

For all of the dads out there reading this, we wish a very Happy Father's Day. Please enjoy your children, not only today but everyday. There are so many dads who will be facing this holiday without their beloved child and that is a pain no parent should ever have to bear. Hug them tight, tell them that you love them and cherish the moments!!

With much love,
D,R,B and M.

Friday, June 18, 2004 7:30 PM CDT

Hi there,

Today, we had a relatively quiet day at home. Despite Molly's 6 am rise, we made it through the day. Molly was happy and energetic even though she was reluctant to eat or drink much. Our friend, Amy, came by for a visit and that was great. We return to the clinic on Monday for blood counts and a check-up in preparation for more chemo on Tuesday.

Billy is now back at his grandma's house in Cape Coral Florida. He sounds exhausted and I can't imagine that he's not after all of the running around he did over the past week. I know he is missing home but he'll be here soon enough on Tuesday.

Goodnight for now.

Love,
D,R,B and M.

Thursday, June 17, 2004 2:04 PM CDT

Update: 11:30 pm and we are finally home. Hooray!!

Hi again,

Finally, some good news! We should be going home early this evening. Molly's ANC has finally jumped to 1200, which is a tremendous increase. She no longer needs to take the GCSF (neupogen) injections. Her appetite seems much better and she has now started to drink some fluids again. Her hemoglobin did drop to 8.0, so she will be receiving another red cell transfusion before we leave. However, you would never know that she needs blood because she has been running around with the energy of a rocket ship! She really is unbelievable! The blood that she is receiving today is the last that she has out of the blood that was donated to her directly so again, if anyone has donated to her in the past and is eligible to donate again, we would so appreciate it.

Billy continues to have fun in the sun in Florida. How I wish we were there with him!! We could so use a vacation and that make-a-wish trip next year is looking better and better.

Our friend from the hospital, Zoe, is in the room right next to Molly. She looks well but has some more time in the hospital so keep sending good thoughts and prayers her way.

Also, when you think of Molly, please also remember the all of the other kids afflicted with this beast. Everytime we come here we see so many very sick children and it is truly heartbreaking. They are all so beautiful, from the infants to the teens. All are fighting the battle of their lives. It's so easy to complain about the day to day nonsense in our lives from the heat to the bills to messes our kids make to almost anything else. All of it pales in comparison to what these children face on a daily basis.

Thank you all for being so special to us.

With love,
D,R,B and Miss Molly.

Wednesday, June 16, 2004 6:33 PM CDT

Hello again,

Unfortunately, we are still in the hospital. Molly's blood counts just don't want to budge yet. Her ANC remains at 100, which is just too low to be discharged. Her hemoglobin dropped a bit too today to 8.9. If it gets to 8.0, she will need another red cell transfusion. If any of you reading this have donated for her in the past and are eligible to donate again, that would be very much appreciated.

Molly's mood today was basically good and she had a good amount of energy too. She took a few walks around the hallways but still can't go into the playroom because of the C-Diff infection that she has. She has not eaten anything or had anything to drink at all either for the last 2 days but the doctors aren't too concerned. They think it's related to her low blood counts and that her appetite will improve soon. Her weight is still at the 50-75th percentile, which is great.

Billy continues to have a great time on his Florida vacation. He's loving the theme parks and being with his grandmother and cousins.

We hope to post some good news about Molly soon. Many thanks to all of you who have sent food, gifts, cards, etc. Your support is incredible and we are very blessed to have such wonderful people in our lives.

Oh, and about the opossums...now we have a big trap on the roof with apples and peanut butter inside. Still no signs of them. Maybe tonight.

With love,
D,R,B and M.

Tuesday, June 15, 2004 12:02 AM CDT

Hello again,

Not too much new to report. We're still in the hospital. Molly's ANC (Absolute Neutrophil Count) is slightly improved (100) but it's not enough for us to go home. Her other blood counts are slightly improved as well. She's becoming less tolerant of being at the hospital and has been getting somewhat cranky. I know it's to be expected but sometimes it can get to you.

Billy is now in Universal having a great time. At night, he has been a little weepy and homesick. How I wish we were all there together.

No opossums have been captured yet, for those of you following this saga. Sneaky little critters.

OK, be well and have a peaceful day.

With love,
D,R,B and M.

Monday, June 14, 2004 2:32 PM CDT

Hi again,

We're still at the hospital, now in an isolation room because Molly again tested positive for C-Diff (a stomach infection that causes diarrhea as a result of being on too many antibiotics. The hospital protocol requires an isolation room, which is a private room. That's fine with me. At least there's a shower I can sneak into and use. Unfortunately, there is no playroom for Molly. C-Diff can only be passed through the "poop" and Molly is still in a diaper so there really is no concern about giving it to someone else but rules are rules in a hospital.

We don't know when we'll be home. Molly's blood counts are not improving yet and that is because of the last round of chemo she endured. It just hit her marrow hard and it takes time to recover. Her ANC was 68, which is very low. She has no fever now and seems to be pretty happy overall.

Billy is now LOVING Florida. He's having so much fun with his cousins. I don't think he'll want to come home now that he's used to sleeping away from us! Tonight, the family is heading to Orlando and Universal Studios.

The opossum saga continues. Still can't catch them. Very annoying.

OK, hope all is well with all of you.

With lots of love,

D,R,B and M

Sunday, June 13, 2004 9:00 AM CDT

Hi there,

Once again, we took the late night trip to the ER due to a fever and neutropenia. Molly had about 101 degree temp and her ANC (absolute neutrophil count) was about 72 so we are back on Gentamycin and Cefipime (sp?)(two antibiotics). She seems to be feeling pretty well considering we didn't get to the ER until about 3 am and didn't get up to a room until about 9 am. We'll probably be here for about 2 days. We're hoping her counts will come up, that her cultures will be negative and that the fever will not return.

Oh, and the opossums...they are still there. We heard them again last night and Roly went outside with a flashlight. He saw their little eyes shining from behind the chicken wire that the hole was stuffed with so now, they can't get out. Great. The guy can't come back until Monday so let's hope he catches them then.

With love,
D,R,B and M.

Saturday, June 12, 2004 7:59 PM CDT

Hello,

Today we slept in a little. We were so tired and it was the first morning we didn't have to be up and out early. Billy called quite a few times from Florida last night. As the night wore on, he became very weepy and homesick. He cried and said that he wanted to come home. It broke my heart but eventually, he fell asleep and today he seemed to be feeling better. He went to the beach and swam and took a trip to Toys R Us. Let's hope tonight is easier for him. I think he'll adjust (at least I hope so).

As for Miss Molly, today she ate and drank almost nothing. That is never a good sign. Last night, she had about a 99 degree temperature, which is not a concern but if it had gone higher, we would have had to go to the ER so we packed the diaper bag, checked her temp and it never went higher. Today, she had no temp but she's been very irritable and cranky, again not a good sign. We're really hoping to be able to stay home and not go back to the hospital until our appointment on Monday morning. She's vomited bile a couple of times so we're keeping a close watch.

Now for a bit of good news on our opossum saga. It seems that they have vacated the premises. My parent's neighbor came back today to catch the mother but they were all gone. He found the hole in the eaves which we surmise was initially made by a raccoon. Tomorrow, Roly needs to cut some tree branches, which seems to be the critters' "ladder" to our roof. Never a dull moment.

Until tomorrow,
D,R,B and M.

P.S. There are some new photos of the kids in the photo section of this webpage. Enjoy!!

Friday, June 11, 2004 8:30 PM CDT

Hi again,

Well, exhaustion has really set in today. We started the day off bright and early as we prepared for Billy's Moving Up ceremony at Westbury Friends School. Billy's class performed a "rhythmic poem" and a song, during which Billy sang his heart out. Very, very cute. He said his "so long's" for the summer and will be returning in September. Molly didn't attend the ceremony because of her low blood counts so she stayed at home with my mom. She watched the video tape when we came home and she loved it.

When we got home, we finished packing Billy and drove him to the airport to meet Uncle Eddie. The "boys" went to Florida to spend some time with our family. Billy was very, very excited but also nervous. He hugged me for about 20 minutes nonstop before he had to board the plane. If I only knew that all I had to do to get some major hugs was plan a trip away from home..... I spoke to Billy a little while ago and he arrived safely and was so happy to be with his grandparents, aunts, uncles and cousins. I know he is going to have a great time.

Molly seems to be feeling OK today. She had a good amount of energy. She had a few bouts of vomiting but it didn't really stop her from doing what she wanted to do (and by that I mean, continue to make the major mess she began a couple of days ago). She's not eating that much now and this concerns me a little bit.

Now, for the next installment on our "opossum" saga - We do in fact have an opossum family living in our attic. My parents' neighbor (who removes these critters for a living) came by and confirmed that there are more animals in the attic. GROSS!!! Tomorrow, he will set traps (that will not injure them because even though they are vile, I wouldn't want them hurt). Hopefully we'll get them out of there soon and be able to patch the hole in the eaves that they came in through.

Well, that's all folks for now.

With love,
D,R,B (now in Florida) and Miss M.

Thursday, June 10, 2004 10:23 PM CDT

Hello to everyone,

Today was an absolutely crazy day. It's after 11:30 PM EST and I am just sitting down to write this update. We began our day by taking Molly to the Morgan Center for her "Moving Up" ceremony. Cute is a complete and total understatement to describe this morning. The children were dressed in white graduation gowns with caps, tassels and all. Did our Angel wear the cap though? Nooooo. Instead, she wore a beautiful white straw hat with a pink flower that her Uncle Mike and Aunt Laurie from Tennessee recently mailed to her. The kids sang the Wheels on the Bus, Five Green and Speckled Frogs, You are My Sunshine, and If You're Happy and You Know It. They were just too funny. After, they took a formal picture, during which Molly actually wore her cap and gown and agreed to remove her binky. Then she had a make-up picture taken because she was in the hospital the last time the photographer came. After that, the children celebrated 2 birthdays (Eric's and Ricky's) with Blues Clues and a clown. Many festivities ensued. Then it was a grand buffet of a lunch. The Morgan Center was decorated beautifully and it was truly so touching to see what Nancy and Rod Zuch (the founders of the program) have created. During the time the kids spent at the Morgan Center this year, they received many gifts, most of them not tangible though many were. They have been showered with love, support, nurturance and compassion. News 12 Long Island came today to film the ceremony and I was interviewed. My interview made the 5 PM edition of the news. I thought they were just getting some information on Molly but instead, it was me on TV. The camera really does add 10 lb. (lol).

After all of the insanity in the morning, we went to the clinic where Molly was examined and had some blood tests done. She needed another transfusion, this time for platelets and I was not happy to find out that her ANC was next to ZERO. Had I known, I would probably not have taken her out to the Morgan Center but when we last left the hospital, her counts were on the rise and we thought she was in a better range. She started back on daily injections of neupogen (joy of joys - I get to give this to her) and we hope it will help to raise her counts. We didn't get out of the clinic until close to 6:30 PM.

After that, Molly fell asleep and she has been sleeping ever since. Roly and I spent the night packing Billy, as tomorrow is his last day of school (private schools end early) and he is going to Florida with Uncle Eddie to visit with Roly's parents and sister and many other friends and relatives. He is very excited but nervous too. (So are we -- the nervous part!!) A trip to Universal is planned as are many other fun activities, including a communion party for Billy's cousin Carla. Let's hope he gets on the plane without freaking out. Please pray that he gets there safely and has a wonderful, safe trip.

You would think that all of this would be enough excitement for one day but there is actually more. About a week ago, I told Roly that I heard a noise in the attic and he assured me that it was just in my mind. Well, that hallucination of mine turned out to be a baby possum, which Roly discovered after trying to fix a vent in our yellow bathroom. OMG!!! That means that there is probably a nest in the attic and other critters up there and I am totally freaked out. I already called the exterminator (twice) and can't wait until it is taken care of.

Well, that's the news for today. Let's hope the days to come are a little less zany than this!!

With love,
D,R,B (the traveling man) and the Divine Miss M.

Wednesday, June 9, 2004 8:06 PM CDT

Hi to all,

Today, Molly was very much a three-year-old. She ran around with lots of energy and giggles. That is always a pleasure to see. On the not so pleasant side, she engaged in her drawer-emptying routine and threw her clothes all over her room. She also emptied a bunch of toy buckets and threw the contents all over the living room. Even so, it was good to see her so energetic and full of life. She went to the Morgan Center today and tomorrow, she has her little "moving up" ceremony. It promises to be very cute!! Then, we have to go to the clinic for her check-up and blood counts. Her stomach is still quite off but we're hoping for some improvement soon.

With love,
D,R,B and M.

Tuesday, June 8, 2004 8:50 PM CDT

Hi there,

Today was a relatively quiet day at home. That's a "good thing" for sure. Molly basically rested and played. Her stomach is bothering her again, probably from all of the antibiotics that she had been on. I spoke with her doctor today and he said that it would be ok to come in on Thursday afternoon instead of tomorrow, which I'm happy about. Hopefully, that will save us one extra trip this week. We'll keep you posted.

With love,
D,R,B and M.

Monday, June 7, 2004 6:02 PM CDT

Hi all,

We are happy to report that we just got home a little while ago. All of Molly's cultures were negative and the fever she had was likely the result of being neutropenic (having very few infection fighting white blood cells) or a side effect of one of her chemo drugs, ARA-C. She is tired but still seems to be feeling good. Lately, she has a lot of energy early in the day and into the afternoon but by the time night comes, she is somewhat wiped out but that is to be expected.

Her neutrophil count is on the rise, which means that her bone marrow is beginning to work again. To help it along, her doctor decided to give her an injection of neupogen, a drug that further stimulates the white blood cells. In addition, she received chemotherapy today in the form of vincristine and peg-asparignase. The vincristine is an IV push and is the drug that tends to cause leg and jaw pain. The asparignase is an intramuscular injection and it hurts. Neither of these should adversely impact her neutrophil count but the latter can cause some clotting issues. This is a little bit of a concern because her platelet count is dropping. As of now, we are scheduled to go back to the clinic on Wednesday for another blood count and checkup. We very much want to get to the Morgan Center on Wednesday but even more, on Thursday, since it is the last day of the year and there will be lots of celebrating.

Many thanks to all of you checking in on us. We really appreciate it and are very grateful for your support and prayers.

With love,
D,R,B and M.

Sunday, June 6, 2004 4:16 PM CDT

Hi again,

I wish that there was something new to report but basically, it's the same story. Molly's ANC is still low (near 100) and that means that she cannot go home yet. She remains at Schneider's Children's Hospital. If she goes home too soon, then she is more at risk of getting a serious infection. We just have to wait until her bone marrow recovers enough and starts producing more neutrophils, or infection fighting white blood cells. We're of course hoping that this will happen soon.

Thanks for all of your good wishes.

With love,
D,R,B and M.

Saturday, June 5, 2004 4:16 PM CDT

Hi there,

Molly is still inpatient at Schneider's Children's Hospital. Her ANC remains in the mid 100's and because of that, she is not able to go home yet. She seems to be feeling OK overall and more energetic since the blood transfusion she received last night. We'll see what tomorrow brings.

With love,
D,R,B and M.

Friday, June 4, 2004 8:13 PM CDT

Hi there,

Molly is still in the hospital. She continues to be neutropenic and her counts have dropped a little more. So far, her blood cultures have been negative for an infection in her central line. Her ANC was in the mid 100's today and her hemoglobin was at 7.8 so tonight she is getting a blood transfusion. She is still running a low grade temp. In the afternoon, her spirits were great but as the evening has progressed, she has become very weepy and irritable. She just wants to go home, (which is what I want too). When her neutrophil count (ANC) is on the rise and close to 500, we'll be heading home. Let's hope it's soon.

Thanks for all of the good wishes and prayers.

Love,
D,R,B and M.

Thursday, June 3, 2004 12:23 AM CDT

Hi there,
Well, so much for being at the clinic for a few hours. Unfortunately, at about 10 pm last night, Molly got a fever and back to the ER we went. Since she's neutropenic (ANC is 200), she was admitted and is once again on IV antibiotics. She seems to be OK but tired since we didn't get into the room until about 3:30 am.

We'll keep you posted.

Love,
D,R,B and M.

Wednesday, June 2, 2004 5:32 PM CDT

Hello,
Today was basically a good day for Molly. She and I went to the clinic in the morning and everything went smoothly. She got her chemo and we went off to the Morgan Center for a morning of learning and fun. In the afternoon, Molly napped a bit. She has not eaten anything at all today and hasn't been drinking too well either. Of course, that's a concern, especially since she is AGAIN suffering from C-Difficile, which is a stomach infection that causes diarrhea. Tomorrow we return to the clinic for more chemo. If her drinking doesn't improve, then she'll probably spend a few hours there getting IV hydration.

We'll keep you posted.

Love,
D,R,B, and M.

Tuesday, June 1, 2004 6:24 PM CDT

Hi All,
Today we went to the clinic bright and early for Molly's chemotherapy. The placed was mobbed, as I had expected. The "powers that be" are in the process of reorganizing the waiting areas and appointment times so it was even more chaotic than usual. When we got to the clinic, Molly began vomiting bile, as she had no food or drink in her stomach because of the anesthesia she was to receive. Molly's counts were just good enough to receive the intrathecal chemo she was scheduled for. Her ANC (absolute neutrophil count) needed to be at 500 and hers was 503 on a manual count. As always, Molly was a trooper. We were at the clinic for many hours and by the time we got home in the afternoon, Molly was tired but she only napped briefly in the car as we drove to pick Billy up from school. Despite everything, her mood remains very good. We go back to the clinic again tomorrow for more IV chemo and then we hope if all is well, we will make it to the Morgan Center for a little bit.

We want to thank everyone who has been so kind and supportive to us. It means a great deal.

With love,
D,R,B and M.

Monday, May 31, 2004 9:10 PM CDT

Hello again,
Today was a sleepy, rainy day at home. Molly basically rested. She watched some movies, made a few pictures, took a nap, heard some stories and eventually, fell asleep. Although she asks for food often, she is now not eating most of it. She continues to lose that "steroid look" and has slimmed down even a bit more. This week, she has another heavy week of chemo ahead of her. She starts off tomorrow with another dose of ARA-C (an IV drug) as well as intrathecal methotrexate, or chemotherapy given directly into her cerebrospinal fluid under sedation. That again means that she cannot eat or drink anything after midnight because she will be receiving anesthesia. There are a lot of children scheduled for similar procedures tomorrow so that means that we will probably be at the clinic for a good portion of the day. The clinic will probably be quite crowded too since it is the day after a holiday. Then, Molly has more IV chemo each day for the remainder of the week. Wish us luck.

Hope you all had a nice, restful 3 day weekend.

Love,
D,R,B and M.

Sunday, May 30, 2004 7:59 PM CDT

Hi,
Today was another nice day. Molly seemed to feel pretty well overall. She got to get outside for a bit. She watched Roly plant a few flats of flowers. Billy tossed around the baseball and entertained his sister. In the afternoon, we went to our friends' home for a barbeque. Molly enjoyed being in some new surroundings, as I think she's getting quite tired of being at home all of the time. She flirted like crazy with Eric, one of our friends. It was very cute.

Even though it is early, we are all tired and going to crawl into bed with our books. Talk to you all tomorrow.

Love,
D,R,B and M.

Saturday, May 29, 2004 9:10 PM CDT

Hi,
It was a relatively quiet day today. This morning, we all went to see Shrek 2, courtesy of the Luke Neuhedel Foundation. Luke lost his battle with cancer when he was just 2 1/2 years old. His family has created the foundation named for him in order to improve the quality of life of children who are battling cancer. It was great to go and do something "normal" like go to the movies with our whole family. Molly liked it (as did Billy), although it tuckered her out a bit. Later, we stopped by a friend's house briefly. They always have a big Memorial Day bash, with live music and lots of food, drinks, and fun. Molly stayed outside with us and enjoyed the fresh air. Roly got up on "stage" and played some drums. Molly seems to be feeling OK, except her legs still appear to be bothering her, presumable from the vincristine. We have to talk to the doctor about that next week.

We hope tomorrow is as nice as today was.

Hugs to you all,
D,R,B and M.

Friday, May 28, 2004 8:06 PM CDT

Hello there,
Just a quick note to say that all is well. Molly finished her first week of the "reintensification" phase of her protocol. She did very well considering the significant doses of chemotherapy she received this week. Unfortunately, she once again tested positive for the stomach infection, C-Diff, that she has been battling with for some time. This infection is the result of being on so many strong antibiotics, as antibiotics tend to cause imbalances in one's "good" intestinal flora as well as the "bad" ones. So again, she's back on Flagel, an antibiotic to try to put things back into balance. She's in good spirits and so far, her blood counts are good. We plan to attend a special showing of Shrek 2 tomorrow morning, which is being sponsored by an organization dedicated to improving the quality of life of children on chemotherapy.

For those of you who have asked about Molly's friend Zoe, we found out today that her surgery was successful. We visited her after our clinic appointment and Zoe looked great. Her mom said that they were hoping to go home later today or tomorrow the latest.

Hope you all enjoy the Memorial Day weekend!!

Love,
D,R,B, and M.

Thursday, May 27, 2004 9:56 PM CDT

Hi there,
Molly and I began our day by once again heading off to Schneider's Children's Hospital for the daily dose of chemo (Ara-C) she is scheduled to receive for the next couple of weeks. She slept on the way in and actually was sleepy even as she got her medication. We had an unusually short wait today, which was a pleasant surprise. After, we went to a friend's home, who cuts hair as her profession. She trimmed the crazy strands of hair that Molly has left and Molly looks a bit better. Most of her hair is gone but she has this kind of "peach fuzz" left, which reminds me of her newborn head. In fact, she even has a little bit of cradle cap. She wasn't upset and even seemed happy to be a "big girl" and get a hair cut. After that, we visited with my dad and mom and then we came home. It was such a nice day that it was good to get out for a little bit. Molly's appetite has dropped off so much in the past few days. She asks for food but usually doesn't eat it now. Already, her face is slimming down a good amount.

Tomorrow we plan to go to the Morgan Center for a Memorial Day party. It should be fun. We haven't heard anything yet about how Molly's friend, Zoe's surgery went. We'll let you know as soon as we know something.

Talk to you soon. Many thanks to those of you who signed the guest book. It's nice to see who's "checking up" on us and we appreciate it very much.

Love,
D,R,B and M.

Wednesday, May 26, 2004 6:31 PM CDT

Hello to everyone,
Molly did well last night. After she settled down, she was able to sleep well without any significant coughing throughout the night. We returned to the clinic this morning and Molly received her scheduled dose of chemotherapy. She was examined by one of the oncologists and her lungs were clear. However, Molly's nose was running a little bit and she still seemed fatigued so we decided not to take her to the Morgan Center. We also did not want to risk exposing the other children to Molly in case she has a little cold. We hope that by Friday, she will be in good shape to go to school, as there will be a party there in honor of Memorial Day.

Molly slept a bit today and tonight she seems happy and is acting more like herself. We are gearing up to watch the season finale of American Idol, a favorite show in our home.

Hope all is well with you. Please remember to say a prayer for Zoe (Molly's friend from the hospital) who will be having surgery tomorrow to remove the remaining spot she has on her lung.

With love,
D,R,B, and M.

Tuesday, May 25, 2004 10:45 PM CDT

Hi there,

We had quite a long day today. We spent about 11 hours at the hem-onc clinic getting chemo and IV hydration. Molly was amazing. She was so good overall and really entertained herself. She packed her little Tinkerbell backpack with many essential items such as a sea shell, a brush (considering that she has almost no hair now), a mirror, pretend perfume, sun screen, a little bottle of shampoo, etc. Get the picture?? Lots of "stuff"! She watched her new favorite movie, The Haunted Mansion, over and over on the DVD player given to her by the psychology department from Baldwin where I work. She was happy to go home and by the time we got here, she fell asleep and has basically been sleeping ever since. We had to wake her to give her an oral chemotherapy pill called Thioguanine (sp?) and when we did, she started coughing up a storm. The cough sounds like croup and it's possible that what she had last week was a virus whose symptoms include the croupy cough, hoarseness in the voice, pink eye, fever, etc. Who knows for sure but I hate that "barking" cough. We spoke to the hem-onc fellow on call and as long as she's comfortable, has no fever and doesn't seem to be straining to breathe, we can stay at home but if the croup acts up, we're off to the ER. We're hoping for a quiet night!! Keep your fingers crossed and say a prayer.

Until tomorrow....

Love,
D,R,B and M.

Monday, May 24, 2004 10:11 PM CDT

Hi to all,
Today, Molly was seen at the clinic for a check up and to have her blood counts looked at. Her ANC (absolute neutrophil count or part of her white blood count responsible for fighting infections) was about 1600, which is good enough to start the next phase of her chemo protocol. She will get a number of toxic medications tomorrow and we will probably be at the hospital for a long day. However, the insurance did approve the IV hydration at home and a very kind nurse named Jill came over and showed us what to do. Molly is sleeping now and she is getting hydration as she sleeps. It seems a little wierd to see an IV pole in her room but we are happy that she is getting this. The fact that she is getting a jump start on the hydration should hopefully shorten our time at the hospital tomorrow. Molly lost a little bit of the weight that she put on, and that is a good thing. While her face is still quite puffy, she is actually starting to lose a little bit of the swelling in her cheeks. She still seems to be suffering some of the side effects of the vincristine that she got 2 weeks ago, as her legs still hurt and her voice is hoarse and "off" a bit.

Overall, Molly remained in a pretty good mood today, and she danced and did arts and crafts at the clinic. She saw her little friend Zoe there and they played together for a little bit. Zoe is almost one year older than Molly. Zoe is having surgery on Thursday to remove the one remaining spot on her lung that originally came from a tumor on her kidney. I believe that when she was diagnosed initially, Zoe had many more spots on her lung so thankfully, she is doing well. Keep her in your prayers. I know her parents and family are of course concerned.

All right, we'll keep you posted. Stay well and take care.

Love,
D,R,B and M.

Sunday, May 23, 2004 10:39 PM CDT

Hi again,
As you can tell, we put some new pictures up. They don't really show how chubby Molly had gotten but they give some idea. She is actually eating less now that the steroids are getting out of her system. Even her face has already started to slim down a bit.

Today, Molly and I spent the day at home together. Billy and Roly went to Shea Stadium to see the Mets play. This was an organized trip that his Little League puts together each year. Roly took Billy early and he got to see the players warm up. One threw a ball to Billy and he was thrilled. He was able to go out onto the field with his team at one point and that was very exciting too.

At home, I cooked matzo ball soup and Molly ate it (but that is nothing new these days!) We watched a few movies and had a tea party. She dressed up in all kinds of kooky outfits. She was pretty happy again today, though she is still having so much trouble on the steps from the vincristine. This week she has a lot to endure. We start tomorrow with a check-up and then Molly has chemo everyday for the remainder of the week. We hope that we will be able to get a home care nurse to come and start some IV hydration overnight on Monday so Molly will be ready for her chemo on Tuesday. On Tuesday, she has Intrathecal methotrexate (chemo given directly into the spinal fluid under sedation) for which she cannot eat or drink from midnight the night before. However, she also has a very toxic drug called cytoxin the same day that requires many hours of IV hydration before and after the drug is administered. It's an all day affair. It's important that she is well hydrated when she gets the cytoxin so beginning the hydration process by IV overnight makes sense, since she won't be able to drink anything for a while due to the anesthesia she will receive. Let's hope the insurance company agrees to send the home care nurse.

OK, until tomorrow...

Love,
D,R,B and M.

Saturday, May 22, 2004 9:13 PM CDT

Hi there,
Today Molly woke up happy and remained in a good mood all day long. She asked to watch a "Wiggles" video and danced along with it. It was the most active she has been in a few days. She bossed poor Billy around like crazy today but he's such a good sport and just giggles at her. She's taken to hiding things, like my hair brush or Billy's shirt. When we ask where she put them, she grins ear to ear, shrugs her shoulders and says "I don't know". It's a new game she's getting quite a kick out of playing. Her hair is almost all gone now and that looks kind of strange to us. We are getting used it though.

Hope you all had a great day. Enjoy the good weather!

Love,
D,R,B and M.

Friday, May 21, 2004 9:20 PM CDT

Hi there,

Today Molly was in such a good mood. She was giggling and smiling almost all day long. What a pleasure to see her upbeat and happy. She is physically still not at her best. The vincristine (one of the chemo drugs) still seems to be affecting her adversely, as her hands are still tremoring a bit and her legs seem to hurt her. She is having lots of difficulty on the steps and even seems to be having some trouble getting herself around on level ground. She is still busy eating though, especially that matzo ball soup!! Some of our friends and neighbors have taken up the challenge to make the best soup and have been bringing it by for Molly. She just eats it all and loves each spoonful, so many thanks to all of the matzo ball chefs out there!!

Billy has an exciting evening tonight. His school is doing an activity called "Prime Time" in which the children come to school in the evening to do all sorts of activities that somehow involve reading. The point of the evening is to show the kids that they can have lots of fun without TV and video games. At Billy's school, all of the kids who attend, sleep over at school. He called a little while ago and said that even though he had fun so far, he wasn't feeling so well and wanted to come home. Roly is with him but he said that two things are missing - Molly and me. We encouraged him to stick it out and I hope he does.

OK, we'll keep you updated and will post more news again tomorrow.

Love,
D,R,B and M.

Thursday, May 20, 2004 8:27 PM CDT

Hi again,
We are home. Molly was discharged from the hospital in the early evening. She was without a fever for 24 hours and her blood cultures were negative for 48 hours so the doctor said it was fine to go home. She's still not feeling too well but she's much happier to be home than at the hospital, even though the staff there goes out of their way to make the stay as nice as possible. Molly's urine analysis was negative too so it doesn't appear that she had a urinary tract infection. It is possible that whatever caused the fever was viral but we just don't know for sure. Of course, she again has significant diarrhea as a result of the IV antibiotics she was placed on. Her poor stomach just can't get a break. She is still quite swollen from the steroids and she actually gained more weight -- about 8 or 9 pounds in all since she started taking the decadron a little more than 3 weeks ago. That is a lot of weight for a little child! Due to a shot of neupogen that Molly got the day we were admitted, she is no longer neutropenic, but her counts are dropping again so we will take it easy and monitor her. Tomorrow we plan to stay home and rest up. Next week she is scheduled for chemo almost every day. OK, I'm so tired from no sleep the past two nights. I have to go put more eye drops in Molly's eyes and try to get some sleep. Talk to you all tomorrow.

Love,
D,R,B and M.

Wednesday, May 19, 2004 7:34 PM CDT

Hi to everyone,
Molly is still in the hospital. She seems to be feeling better than yesterday and is generally in good spirits. She still has a temperature but so far we don't know why. She is somewhat swollen and might be retaining water. One of the chemo drugs causes some imbalances in her electrolytes and protein in her blood so it's all a balancing act. She has been complaining when she urinates so perhaps she has a urinary tract infection. She also appears to have "pink eye" so we are giving her antibiotic eye drops as well as IV antibiotics to cover whatever the fever might be from. She's asking to go home already so we are hoping for a short stay. We'll see what tomorrow brings.
Talk to you soon.
Love,
D,R,B and M.

Tuesday, May 18, 2004 6:08 PM CDT

Hi there,
Molly woke from a nap a few hours ago with a high fever. Because she is neutropenic, she needed to go to the hospital for admission and IV antibiotics. The hemotology-oncology nurses are just wonderful. Even though they were close to closing, they waited for me to get there and took care of Molly so that we would not have to go through the ER. She is now resting comfortably in room 214 A at Schneider's Children's Hospital. Roly is with her and I am running home to see Billy and pack a few things, as we will probably be here for at least a few days.
We'll keep you posted.

Love,
D,R,B and M.

Tuesday, May 18, 2004 6:35 AM CDT

Hi there,
Yesterday (Monday) we went to the clinic for a checkup and her regularly scheduled monthly dose of prophylactic IV antibiotic (pentamidine). Molly's counts are down, which is to be expected following the heavy rounds of chemo she just received. She's considered to be "neutropenic" again, which means that her infection fighting ability is compromised right now so we need to take a few extra precautions to try to keep her well. Although the steroids are finished right now, their effects remain in her system for about a week or so. In just one week's time, Molly gained about 5 lb., which is a huge amount for a child of her age and size. It will come off again as soon as her appetite decreases. Then she'll probably go back to eating nothing and we'll complain about that! The clinic was so busy in the morning yesterday that after her check up, we left and went to the Morgan Center. Molly really wanted to go to school. Then we went back to the hospital for her pentamidine and procrit. She still got up a few times in the middle of the night to eat. Roly and I barely recognize her she's so puffy and big now. I will try to post a picture on the website to show you all what she looks like now. OK, talk to you later.

Love,
D,R,B, and M.

Sunday, May 16, 2004 10:44 PM CDT

Today was such a beautiful day on Long Island. Molly seemed to be feeling pretty well. It was so warm out that both kids insisted on putting their bathing suits on in order to help Roly and I wash the cars. The hose was in full use, if you know what I mean. Then a few more children on our block joined us so it was a fun time. Molly kept taking breaks to eat, but that is nothing new these days. She finally got her last dose of steroids this evening. I hear that it takes about a week before the kids start to resume their normal eating and sleeping habits but at least we are on our way.

Until tomorrow....

With love,
D,R,B and M.

Saturday, May 15, 2004 10:02 PM CDT

Hello,
There's not too much that is new to report today. Molly continues to eat and eat and eat and then eat some more. I can't believe the impact of the steroids. Only one more day to go and hopefully she'll begin to resemble herself again!

Billy had a great day in baseball. He got 2 hits and made an outstanding play at 3rd base. He was quite proud of himself. He and I went to a communion party and then he spent the afternoon rollerblading with his friend. He got quite adept by the end of the day. He told my dad, "Papa, when I started doing this I was only a beginner. Then I got to the advanced level. Now, I am an experiment"! Too funny!

As for Roly and I, we are just tired from getting up in the middle of the night to cook for and feed Molly. On top of it, we found a flood in our basement today and still aren't 100% sure of the source but we think we know where it might have been from. Guess we'll find out if it happens again!

OK, until tomorrow...

Love,
D,R,B and M.

Friday, May 14, 2004 10:15 PM CDT

Hi,
Today when Molly woke, she complained about her ear hurting her. Our good friend, Sheila (who happens to be our pediatrician as well), was kind enough to check her out so that I could avoid a trip to the hospital. Her ears were fine and so was everything else so who knows what it was that was bothering Molly. We went to the Morgan Center, which is always the bright spot in our days. Molly really enjoys being there. The past two times we have gone, she has asked to go into the class in her stroller because she's tired and her legs hurt from one of the chemo medications (vincristine). Walking is sometimes too much for her now. She continues to eat almost constantly. Even though we try very hard to distract her and hold her off, she is frequently crying for food. The steroids are just making her feel like she must eat all of the time. She has gotten the biggest cheeks and belly, though her arms and legs remain really thin so her body looks somewhat out of proportion now. The steroids end on Sunday and we can't wait.

OK, we'll check back with you all tomorrow.

Love,
D,R,B and M.

Thursday, May 13, 2004 8:10 PM CDT

Hello,
Today was a relatively quiet day at home. Molly spent the day resting and eating. She seems to be bouncing back from whatever sent her into that miserable state a few days ago. Her stomach is again "off" but I think this is just going to be a constant battle. She definitely has that "moon face" from the steroids and her belly is all distended too. Tomorrow we hope to go to the Morgan Center.

We hope everyone reading this is having a good day.

With love,
D,R,B and M.

Wednesday, May 12, 2004 9:13 PM CDT

Hi there,
Today Molly seemed to be much more like herself. Her stomach was better and though still tired, she was smiling more and seemed much more comfortable physically. She went to the Morgan Center and once there, she had a very fun time. It was so good to see her enjoying herself, especially after the past few miserable days. We're hoping that we are on the "up swing".

With love,
D,R,B and M.

Tuesday, May 11, 2004 8:01 PM CDT

Hi again,
Today was a MUCH better day for Molly than yesterday. Yesterday, she cried and cried until about 3 am from the stomach pain she had. We were on the verge of going to the ER a few times but stuck it out at home. Finally, she fell asleep and didn't appear to be in severe pain when she woke. She had many episodes of diarrhea today but still she ate and drank a good amount. She was clearly tired today (as we all were) and her legs are still hurting presumably from the vincristine. Let's hope that tomorrow is better yet.
Love,
D,R,B and M.

Monday, May 10, 2004 9:02 PM CDT

Hi there,
It would not be an underestimate to say that this has been an absolutely horrible day for Molly. She is simply not feeling well at all from the chemo and the diarrhea that she once again has. She is in so much gastrointestinal pain and has many body aches from the vincristine (one of her chemo drugs). The doctor actually gave her a small dose of morphine and she is now also taking Tylenol with codeine as needed to help with the pain she is experiencing. It helps a bit but not well enough. I have to be careful about the codeine because it can be constipating and that would actually not be a good thing because the diarrhea is likely owing to the C-Diff toxin in her system. If she gets constipated, that toxin can build up and cause further problems. One would think that with all of this belly pain, eating would be out of the picture but no. Those steroids are still driving the poor child to eat. I'm worried about her. I haven't seen her this miserable in quite some time and certainly not for this length of time. Please say a prayer that she gets some relief soon.

Despite the horror of this day, it is still much better than the one experienced by Justin's family today. Justin is a little boy about Molly's age who lost his battle to leukemia over the weekend. He was a beautiful little boy and I can't believe he is gone. Please pray for him and his family.

With love,
D,R,B, and M.

Sunday, May 9, 2004 9:58 PM CDT

Hi to everyone,
We had an interesting start to our Mother's Day. At midnight when the day started "officially," I was in the emergency room with Molly. She had been sleeping last night and at about 10:30, she woke up sweating profusely and was shivering but had no fever. However, if you are on steroids, the medication can mask a fever so to be on the safe side, the doctor asked us to bring her to the ER for an evaluation and an IV antibiotic (ceftriaxone). Roly stayed home with Billy who was sleeping and my friend Lauri was kind enough to go with me. We were there until about 4:15 am and were then able to go home. They cultured Molly's blood and so far, so good. She was very good overall, even though it took 3 tries before they were successful at accessing Molly's mediport (the central line IV in her chest). That process was VERY unpleasant for everyone, but most of all for Molly.

Today, she seems to be OK. She's very moody and sensitive though and continues to eat constantly. She would not pose for any Mother's Day pictures. Her cousins came by and she played for a bit but she's not quite herself. She made me an adorable book mark and bracelet at the Morgan Center and was happy to give the gifts to me. Billy made me a plaster imprint of his hand in a paper plate and then spray-painted it gold. While these gifts will always be treasured, they are not nearly as dear as being able to be home and together with our family. Our hearts go out to our friends who are in the hospital this day.

To all the moms who are out there and reading this, Happy Mother's Day. When your kids are driving you nuts, take a breath and try to remember that there are many moms whose daily prayer is to have their children well enough to again drive them crazy. God bless you and I hope you all have a great day.

With love,
D,R,B and M.

Saturday, May 8, 2004 5:47 PM CDT

Hello again,
Molly is having a good day today. The nonstop eat-a-thon continues. Her appetite is so voracious from the steroids. Many thanks to our good friends the Rosenbergs who were kind enough to drop off some delicious matzo ball soup, individually packaged for late night reheating. Yes, late night eating....actually, all-night eating is what goes on in our home now. Last night, Molly asked for a roll with cream cheese at 2 am. By 4, she was having rice. By 5:30, it was mac and cheese and not too long after that she had matzo ball soup. Then for breakfast, it was ham, eggs and cheese for the appetizer. Do you get the picture?

As for Billy, he had a baseball game today. Although he didn't get a hit, he did an excellent job in the field. He prevented a home run from happening and made a bunch of excellent plays. And he didn't get too frustrated by not getting a hit so the coach gave him the game ball. He was very, very happy about that.

We hope all of the moms out there have a great day tomorrow.

With love,
D,R,B and M.

Friday, May 7, 2004 10:42 PM CDT

Hi there,
Today the thrush in Molly's mouth seemed more prominent than yesterday so I called the doctor. Dr. Shende wanted to see Molly to evaluate her so we went to the clinic following her morning at the Morgan Center. Dr. Shende confirmed that Molly has thrush as a result of the steroids she is taking. Who knew that thrush could be a side effect of dexamethasone? So, now we have added diflucan to the list of medications she is taking. Overall, her blood counts were still good so I was happy with that bit of news. Unfortunately, the doctors have recommended that we NOT give Molly probiotics (something like acidophilus) because of her suppressed immune system. Even though these products are considered to be very safe and can help to restore the intestinal flora that antibiotics wipe out, the C-Diff infection she has in her "gut" makes her more vulnerable for the probiotic to leak out and get into her blood stream. The result of such a "leak" is unknown but the worst possible occurrence could be sepsis (which could lead to death) and that is an unacceptable risk to take at this time. So for now, we will continue to deal with what comes one day at a time.

Until tomorrow....With love,
D,R,B and M.

Thursday, May 6, 2004 9:19 PM CDT

Hi again,
Today we went to see the gastroenterologist. Dr. Haller spoke with us after the resident examined Molly. Basically, there's not much to do right now b/c Molly's last C-Diff test taken on Tuesday came back negative today. That means that there is not enough of the bacteria present in her system to warrant actual treatment. We are looking into a probiotic supplement but have to make sure that the bacteria in that will not create another problem due to her suppressed immune system. It's always a very delicate balance to keep things in check.

Overall, Molly is doing well but she is very clingy and needy right now. Roly has been away in Florida for the last few days on business and she misses him so much. Every time she gets on the phone she tells him, "Daddy I need you. I want you. Come home now". She's a heartbreaker! She's not 100 percent herself but she's trying to be. She is fatiguing easily yet doesn't want to nap. As a result of the chemo, she seems to be getting a thrush type of infection in her mouth, despite the fact that we do mouth care 4 times per day. It hasn't slowed her appetite though. She's still eating like crazy and I feel like a short order cook. It's a good thing that I come from a family who owned a diner and that I know a little about cooking quickly. Basically, the day goes like this: I cook, she eats, I cook again, she eats more, she drinks, she poops, I change her, I cook, she eats, I cook again, ....etc. What a life we have right now!

On a happy note, Billy got a hit in baseball tonight. He's been working really hard on his swing and was so happy to finally connect with the ball. Everyone cheered and he looked so proud.

OK, I'm so tired I can't keep my eyes open anymore now so I guess I should say goodnight.

Love,
D,R,B and M.

Wednesday, May 5, 2004 8:28 PM CDT

Hello,
We are all doing OK overall. Molly is still tired and naseous from the chemo she received on Tuesday. Her hair has once again started to fall out. Despite her fatigue, she went to the Morgan Center and once there, had a great time. She made me something for Mother's Day and she was very excited to show me the wrapped gift. So cute! Her appetite continues to grow as do her cheeks! The steroids are already giving her some of that "moon face". Tomorrow we meet with the GI doctor and we'll see about her stomach.

Billy was a happy boy tonight because he decided to cash in on a "No Homework" coupon he had gotten from his teacher. Happy that is until American Idol revealed that George Huff was voted off. He actually cried (as he was the last "boy" on the show). Poor Billy. He told me, "America got it wrong mom". He's so sensitive.

Oh well, that's the news for now.

Love,
D,R,B and M.

Tuesday, May 4, 2004 9:23 PM CDT

Hi there,
Today we went to the clinic where we ended up spending quite a few hours. Molly had a check-up and needed to get chemo. This is her 2nd week into "reinduction" (which is a repeat of the heavy chemo she received initially). Despite the intensity of the chemo she is getting, Molly is tolerating everything very well so far and her counts are still up thanks to the dexamethasone (steroid) she is taking. She is tired and naseous but that is to be expected. Her appetite is still increased and she is still loving Matzo Ball soup. (By the way, thanks to all of you who were kind enough to share your matzo ball making secrets!!) We need to go back to the hospital on Thursday when we will have a consultation with a pediatric gastro doctor to discuss Molly's long lasting stomach problems.

Molly is still missing her Grandma Nora who went back to Florida last week. All day long, she asks for her (and then she asks for Matzo Ball soup). So Grandma, you need to come back soon (and make some soup!!)

We have gotten so many cards and surprises for our birthdays recently. Thank you all for being so kind and supportive to us. It means more than you know.

With much love and gratitude,
D,R,B and M.

Monday, May 3, 2004 6:12 PM CDT

Hi to all,
Well, Molly is about a week into reinduction and so far, she seems to be doing OK. Among many other medications, she is taking steroids in the form of dexamethasone and this has caused a huge increase in her appetite. Let's say that the nonstop eat-a-thon has begun and the featured item on the menu is.....MATZO BALL SOUP!!! All day long (and all night as well), we get requests for this soup. Our friend, Linda, made it a while back and dropped some off and both kids really liked it but now, Molly is obsessed with eating it. So, I have dug out my recipe books and will attempt to make it for her. In addition to being so hungry, Molly is somewhat moody. You can see that she is tired but she just can't seem to relax her body to sleep. I will discuss it with her doctor tomorrow. Once again we are having stomach woes. I'm going to ask for a change in medication to see if that might help the situation.
Until tomorrow,
D,R,B and Molly, Lover of Matzo Balls

Sunday, May 2, 2004 9:26 PM CDT

Hi again,
Molly was a happy girl today because she got to go over to her cousins' house to play. Today was my brother Van's birthday (yes, we have A LOT of birthdays all together!) and we got together to cut a cake and celebrate. Even though she threw up right in the middle of the party, it didn't slow her down for a minute and she got right back to playing and even eating! The steriods are making her very hungry and already, I can see her face plumping up a bit. She was really tired by the end of the gathering and fell asleep in the car on the way home. Let's hope she sleeps the whole night long. Billy also had fun today, as being with his cousin Katie is always a great treat for him.
We're hoping for a calm day tomorrow and then we have to go to the clinic on Tuesday for more chemo.
Talk to you soon.
Much love,
D,R,B and M.

Saturday, May 1, 2004 9:49 PM CDT

Hi there,
Just a quick note to say that we had a pretty good day today. Molly's energy level seemed somewhat better and her stomach seems slightly better too. We all went to Billy's Little League game and then we flew some kites in the field across the street from our house. Both kids loved doing that.
Hope all is well with you!
Love,
D,R,B and M.

Friday, April 30, 2004 8:22 PM CDT

Hello to all,
Today is Molly's actual birthday. She is three-years-old today. I'm glad that we did the celebrating last week when she was feeling somewhat better and was more energetic than she felt today. Even though she had a good day, she continued to feel quite tired and even asked to leave the Morgan Center early. It seems that the chemo she received earlier in the week has her rather worn out. Despite the steroids that she's on, she didn't eat all that much today, which again makes me wonder about her stomach. We will keep an eye on it.
Love to you all,
D,R,B and the Birthday Princess, Molly

Thursday, April 29, 2004 11:09 PM CDT

Hello,
So far, things are going OK since Molly began reinduction on Tuesday. Today, she was very tired and she actually took a couple of short naps (one was just an hour after she got up). She seems to want to sleep longer but doesn't appear able to. Perhaps the steroids are keeping her "wired" a bit. As part of her treatment during this phase, she is back on steroids and is now taking decadron in an oral solution that is 30 percent alcohol! It is vile! It tastes like some homemade hooch and leaves her breath smelling like....well, let's just say that I might have a lot of explaining to do if someone from Child Protective Services got a whiff of her right after she's taken the medication!! I can't believe that she is actually taking it! It makes her hungry, irritable and very moody. I think I might be getting a glimpse of her teenage years to come when she is experiencing PMS!

We went to the clinic in the morning and Molly got an injection of chemo into her leg. It hurt quite a bit, not only from the injection itself but also because the chemo burns as it is going into her muscle. She is one brave little girl. Also, she was weighed at the clinic and lost about 2 lbs in the last few days, presumably because of the diarrhea she had earlier. She is finally back on the flagel (the antibiotic), which she needs to treat the C-Diff infection that she has had for weeks now. It's the C-Diff that has been giving her stomach so much trouble. Let's hope that she will be finally on the mend.

One bit of good news is that Molly's counts were the highest they have been in quite some time. This is because of the steroids she is taking. Her counts were so high that we were able to run into the supermarket together and shop for dinner for Roly's birthday. She got tired quickly but we were able to get "the goods" and get home in time to cook. We had a nice birthday dinner with the family.

OK, it's time to get some sleep so I will say goodnight for now. We are sending you all lots of love and we again thank you all for ALL of the kind gestures that have been shown to us. We have amazing friends and family, so really, thank you from the bottom of our hearts.

Love,
D,R,B and M.

Wednesday, April 28, 2004 9:23 PM CDT

Hi All,
Hope this note finds you all well and happy. Today, Molly was a bit tired after receiving the hefty dose of chemo that she got yesterday. Still, she wanted to go to school and since her stomach was better, we went. She probably didn't have any diarreah because one of the drugs she got yesterday causes constipation. Who knows for sure. Anyway, Molly had fun as she always does in school. Tomorrow we go to the clinic for an IM injection of chemo. Molly hates that but who could blame her. Wish us luck. Talk to you tomorrow (which happens to be Roly's birthday!! He's 29 again too!)
Love,
D,R,B and M.

Tuesday, April 27, 2004 9:25 PM CDT

Hi there,
Well, Molly has officially begun the "reinduction" phase of her chemo protocol. Today, she received a number of different medications and she seemed to handle it all pretty well, even the spinal chemo. Even with all she received today, no nap! Where does this child get her energy from?

She has been having alot of diarreah again which is the result of her continuing saga with the C-Diff infection. One culture came back clear but b/c the stomach problems continued, the test was redone and sure enough, it was positive for C-Diff. Because she just got methotrexate, we have to wait to re-start the antiobiotic she had been on. We'll see what tomorrow brings.

Much love to you all,
D,R,B and M.

Monday, April 26, 2004 10:46 PM CDT

Hi again,
Well, one could say that we are certainly on a roller coaster ride. After all of the great days we recently had with Molly, today was ....well let's say, not one of her best. While everything turned out fine in the end, today was one LONG day at the clinic.

After arriving at the hospital in the early morning, we went to cardiology where Molly was supposed to have an echocardiogram. She was completely uncooperative and cried and screamed like we were torturing her. Needless to say, the test could not be completed properly. It was an important test b/c tomorrow Molly will receive some chemo that sometimes has cardiac side effects called doxyrubicin. After much debate about what to do, we waited until Molly got kind of tired and then gave her a dose of IV benadryl which helped her to sleep. The cardiology department came to the hem-onc clinic and did the test there. Technically, the test went great but we will wait to hear what the doctor interpreting the images has to say. (She already had a round of a similar chemo drug during the initial induction phase when she was initially diagnosed in November. So far, her heart looks fine and healthy). We didn't get out of the clinic until after 5 pm today.

Tomorrow, we will be back at the clinic by 7:30 am for intrathecal chemo (chemo given directly into the spinal fluid). She needs to be sedated for this so there is no food or drink after midnight. Should be a fun morning. Molly will also receive a number of other medications. We are really praying that this all goes well and that she feels good through it.

We'll be in touch tomorrow.

Love,
D,R,B and M.

Sunday, April 25, 2004 9:26 PM CDT

Hello to everyone,
Today we celebrated Molly's 3rd birthday with the family. (Her "real" birthday isn't until Friday but she will have a lot of chemo this week might not be up to partying when the actual day arrives.) Her cousins came and she was so happy to have "my kids" (as she calls them) to play with. Everyone had fun and now we're all beat and ready for some rest.

Tomorrow, Nora and Rolando (Roly's parents) are going back to Florida. Molly and Billy both will miss them terribly, as they always have such fun with them. So will Roly and I, as they have been a great help to us over the past month. Nora will be back by the end of June, unless we call her to come sooner. Maybe we will....

Many thanks to everyone who has visited this website and been kind enough to leave us notes and words of encourgement and love. We so appreciate it.

We'll let you know how tomorrow goes at the clinic.

Love,
D,R,B and the Birthday Partying Princess, Molly

Saturday, April 24, 2004 10:19 PM CDT

Hi again,
Not much news to report today. Everyone is doing well, although Molly has been asking for Zofran for her stomach. Despite her stomach woes, she is still dancing and is now getting excited for the "family party" which will happen tomorrow. This will be low-keyed but a chance for Molly's cousins and family to wish her a Happy Birthday.
Love,
D,R,B and M.

Friday, April 23, 2004 10:14 PM CDT

Hello to everyone,
Well, today Molly had one of her BEST days ever!! There are no words to describe how happy she was at her Cinderella birthday party at the Morgan Center. She was so excited about the party that she sang about it all morning. She insisted on wearing her Cinderella costume from Halloween and she looked absolutely adorable!! She didn't stop going for one second! A clown came and the kids celebrated with a mini-carnival including games, face-painting, a parachute and musical instruments. Nothing made us happier than seeing Molly so happy. At one point, she even stood next to the CD player and serenaded us all with a few Disney songs and some ballet moves. At the end of each song, she took a bow. She was just so, so cute. Billy played "hooky" today and joined us for the party fun. He was thrilled to miss school and spend the day with the family. You would think that after all of this, Molly would take a nice long nap. No way. Not our girl. She just keeps going, and going and going...just like the Energizer bunny.

This evening, Roly and I went to a wonderful fundraiser for the Morgan Center. It was at a country club and many of Long Island's great chefs came and donated their services and food. Also, many of the wineries came and provided delicious drinks as well. There was a silent auction and Roly and I got a beautiful Cinderella cell to hang in Molly's room. It is the perfect memento from a perfect day for our princess.

Here's to hoping that the days to come are even half as great as today was.

Much love to you all,
D,R,B and the happiest little Princess, Molly. :)

Thursday, April 22, 2004 10:33 PM CDT

Hello,
We went to the clinic today for blood work and a check up. While we were there, Molly was complaining of feeling cold and she had a temp of 99.0. They kept us for a little bit to see if she got a fever, which thank God, she did not. They did a culture on the blood from her mediport line though just to make sure that there is no infection brewing. She behaved fine and seemed happy all day so who knows? Her counts are all a little on the low side but they present no emergencies at this time. We will go back on Monday for another check of her counts. On Monday, she will also have an ecocardiogram. One of the chemo drugs she will be receiving soon is cardiotoxic, so they need the eco for a baseline measure.

On Tues, Molly will begin the reinduction phase of her protocol. It involves a lot of heavy chemo and probably frequent visits to the clinic for the next couple of months. Not something that we're looking forward to but something that needs to get done. She got through the initial induction therapy without too many complications so let's hope the same prevails this time around. Unfortunately, she will have to also be on a substantial dose of steroids too, which stinks. Oh well, enough about that.

Tomorrow we will be celebrating Molly's 3rd Birthday with her friends at the Morgan Center. Her actual birthday isn't until the 30th but since she will be on a lot of chemo then, we decided to celebrate a little early while she was feeling well.

Talk to you all soon.

Love,
D,R,B and M.

P.S. For all of my crazy friends in the guidance office at the BMS, you keep my spirits up and a smile on my face. Thanks for being such great friends. I love you. D.

Wednesday, April 21, 2004 10:36 PM CDT

Hi to everyone,
Molly had a fun day today. She went to school at the Morgan Center and got to play with her friends. That's always a treat. Her nose bled again two times today. It must be that the clot that formed after yesterday's bump is easily dislodged. She gets so upset when her nose bleeds! She goes back to the clinic again tomorrow morning for a check-up and counts. She also STILL has diarreah, presumably from the C-Diff. We'll have to see what's going on with that.
Billy is doing fine. He is looking forward to having a playdate after school tomorrow with one of his friends.
Hope you are all having a nice day.
Love,
D,R,B & M

Tuesday, April 20, 2004 10:43 PM CDT

Hi there,
We had a moment of "excitement" in the Guarton household today. I went shopping for some things for Molly's upcoming birthday (she'll be 3 on April 30th) and while I was out, she decided to do a little dancing on the slippery floor in the dining room. She fell and we think that her pacifer hit her nose, causing a big nose-bleed. Molly's grandmother called me to come home so I raced out of the store. By the time I got here, her nose had stopped bleeding and she seemed fine. We spoke to the doctor and since her platelets were good yesterday and the nose stopped bleeding, he didn't think it necessary to bring her to the hospital. What a relief. Never a dull moment. I went back out and tried to squeeze every errand I had into today, since it won't be too long before Molly's grandparents return to Cape Coral Florida.

Tomorrow we plan to go to the Morgan Center. Molly keeps asking to go to see "my kids and my teacher". She's always so happy there.

Billy is doing well. He has some very interesting projects he's working on in school. Although he still complains so much about homework, he does it and has been doing a good job with it too.

OK, I'm off to bed. Hope you all get some good sleep too!

Love,
D,R,B and M.

Monday, April 19, 2004 9:17 PM CDT

Hello again,
Today we went to the clinic and Molly saw her oncologist. She is doing well but her counts are low as a result of the chemo she received last week. This is not unexpected, but it means that we must take extra care to try keep Molly healthy, as she is more susceptible to infection now. She did not need any chemo today but instead got her scheduled doses of prophylactic IV antibiotic and Procrit. Due to the many hours we were at the clinic, we were unable to make the Morgan Center. That's always disappointing but we are looking forward to going later in the week.
Hope you are all well.
Love,
D,R,B & M.
P.S. For any of you interested, check out the Morgan Center Website at www.themorgancenter.org. They are having a fundraiser on Friday evening. It looks like it will be a lot of fun!

Sunday, April 18, 2004 10:16 PM CDT

Hi to everyone,
Today was just BEAUTIFUL on Long Island. We are expecting even nicer weather (near 80 degrees) in the next few days. Today, we took advantage of such a nice day and basically hung around our home. Molly refused to nap today and by the time night came, she was definitely tired. But what a stubborn little thing she is...she just doesn't want to miss a thing so she forces herself to stay awake! Same story with her stomach-it's still not right. We go back to the doctor tomorrow and will see what he has to say. Molly will have her counts checked and she's due for an IV antibiotic called Pentamidine (sp?) in lieu of the Bactim she had been taking. Instead of Bactim two times per day for three days each week, she gets an hour long IV drip of this drug once per month. Even though it sounds easier to do the Pentamidine, she was switched not for convenience but because the Bactim was keeping her counts too suppressed.

We put up some new photos for you to enjoy. The one on the home page is from Palm Sunday and believe it or not, by the end of that day, Molly spiked a fever and was admitted to the hospital. That's what is crazy about this illness. Once moment she seems OK (or even better than OK!) and the next, she's really sick and being admitted into a hospital. On the "photo" page, there's picture from a few days ago with Molly eating cheese and crackers along with a couple of her and Billy.

We hope you are all well and we thank you for stopping by to visit our web page. We'd love it if you leave us a note, as the kids get exicted (more Billy than Molly) when they get "mail".

Stay well and enjoy each moment!
Love,
D,R,B and M.

Saturday, April 17, 2004 9:50 PM CDT

Hi to everyone,
Today was another good day overall. The weather was finally nice and we got to go outside a little. Billy had a Little League game and Molly truly cheered him on. She was so cute. She went on a swing for the first time in a long time and loved it. Her stomach is STILL not ok and it's very frustrating for all of us. Her little bottom is just raw and she cries every time we change her now and that is pretty often. We're hoping that this antibiotic works soon!!

Roly and I again want to thank everyone for all of their support and care for our family. The e-mails, cards, phone calls, "surprises" in the mail along with prayers and good wishes touch us so deeply. Really, it would be unbearable to go through all of this without all of you. Thank you so much!! How we wish that we could contact each of you individually but it's almost an impossibility now. We just want you to know how grateful we are.

With much love,
D,R, Billy the Baseball Kid and Molly the Cheerleading Sister!

Friday, April 16, 2004 10:08 PM CDT

Hello to everyone,
I'm happy to report that everyone seems to be OK today. Molly has been in a very happy mood but I think she wore herself out from the energetic day she had yesterday!! Today, she complained a bit about feeling tired. It's possible that the recent round of chemo she received is starting to affect her, since the effects tend to be delayed with certain drugs. She ate well today, even though she is still suffering with diarreah from the bacterial infection (C-Diff) she has.

Roly and I got to go out to dinner to celebrate my 29th birthday (OK, so I'm off by a few years, but who's counting??) We went out with a few couples and we had a great time. As one of my friends said, we'll have to have a barbeque real soon and get together again.

We hope you all had a great day. We are looking forward to a beautiful weekend here on Long Island!

Love,
D,R,B & M.

Thursday, April 15, 2004 10:17 PM CDT

Hi there,
Today was rather uneventful. Actually, that is not a bad thing! Molly was happy to play with her grandparents and Billy went back to school for the first time following the Spring break. Molly's stomach is still quite off due to the bacterial infection she has called C-Diff. She's back on antibiotics to try to clear it up but so far, she's still suffering. Let's hope it gets better soon.

Love to you all,
D,R,B, and M.

Wednesday, April 14, 2004 6:18 PM CDT

Hi to all our friends,
Today Miss Molly has been FULL of energy. I truly don't know where this child gets it from! We went to the Morgan Center where there was a Spring party complete with a visit from Blue from Blues Clues! There were bubbles, a parachute and an Easter Egg hunt. Big Brother Billy accompanied us, as his school does not begin again until tomorrow. Billy took on the very important job of videographer. I just hope none of us gets motion sickness when we watch the tape, as the camera didn't look too steady! After, Billy went to play games at Jillian's with his grandparents and friends. Molly and I went home and I begged her to nap. Eventually, she did but she only woke up with even more energy than before! If only she could share some of that with me...

Hope all is well with you.
Love,
D,R,B and Miss Molly.

Tuesday, April 13, 2004 8:48 PM CDT

Hi there,
Molly seems to be feeling pretty well. She was very, very happy today when the "Wish Granters", Claudia, and our good friend, Joe from the "Make-A-Wish" Foundation came to our house. They arrived with gifts, not only for Molly but for Billy too! They spent a good deal of time with us and Molly was truly able to tell them how much she wants to go to Disneyworld and ride in Cinderella's carriage. It would be great if that wish came true! Joe's daughters came with him too. One of them is recovered from leukemia and she looked wonderful. It is always great to see Jenna because it is a tangible reminder to us that things do get better and even turn out beautifully. We pray each day that Molly does as well as Jenna did.

We want to thank all of you who take the time to visit this web-page and check up on us and Molly. We love it when you leave us notes, so keep them coming! One day, I will print these out and save them for Molly when she is old enough to look back and see how many people love her and prayed for her.

We hope all of you are well. To all of my friends who are returning back to work at school tomorrow, may the transition be easy and may the last quarter be not too hectic!!

We love you.
D,R,B and M.

Monday, April 12, 2004 1:08 PM CDT

Hi there,

We just got home from the clinic after being there for about 5 hours. Molly's counts were just high enough to get both chemo drugs she was scheduled for. She did well and is a bit tired now (and so is her mommy). She is scheduled to go back next Monday so we'll keep our fingers crossed that nothing comes up this week to take us back to the hospital. Billy is spending the day with his grandparents from Florida. I hear a trip to the toy store is planned (as if he needs to go there!) as well as a trip to the bowling alley with his friend.

We'll talk to you soon.

Love,
D,R,B and M.

Sunday, April 11, 2004 10:45 PM CDT

Hi there,
Just a quick note to say that although we were not able to be altogether today, it was still a nice Easter Sunday. Billy and I really enjoyed going to church and hearing our soon-to-be sister-in-law and aunt, sing. What a beautiful voice she has.

Molly seems to be ok, although she is still not quite herself. She refused to put on her Easter dress and instead opted for a funny Blues Clues hooded towel that she wore over her clothes. It just wasn't worth a battle to take some pictures so maybe another day she'll feel like dressing up! She really wanted to go to her cousin's house and it broke my heart not to take her. I guess we'll save that for another day too. Roly and I took turns being with the family while the other one stayed home with Molly.

Tomorrow Molly is scheduled to receive two chemo drugs if her neutrophil count is above 750. We'll see. It was in the 300's when we left the hospital on Friday. If it's still too low, then she'll skip the IV methotrexate and will just get vincristine. We will let you know what happens.

We hope you all had a great day.
Love,
D,R,B and M.

Sunday, April 11, 2004 7:20 AM CDT

Happy Easter to Everyone,
It's about 8:30 am here and everyone is still sleeping. They are all tired from dying eggs, since we didn't finish until late last night. Yesterday, Molly fell asleep in the late afternoon and didn't get up for a few hours. By the time she had dinner, etc...it was almost 10 pm before we started the egg coloring process! But we promised that Molly would get a chance to do this and boy, did the kids have fun. We have some beautifully colored Easter eggs too!

Today, I will be taking Billy to church. Molly's blood counts are still too low for her to go to such a crowded place. I am disappointed that I am unable to bring her because everyone there has been praying so hard for her that I was hoping to have them meet her on Easter. I am going to dress her up in a pretty dress and take some pictures anyway, even though she will be spending the day at home.

Molly's preschool was in Newsday today. There is a big color picture of Molly and her teacher on the back cover of the LI Life section. If you get a chance, check it out.

OK, if I get a chance, I will write again later but for now, we wish you all a wonderful day.
Love,
D,R, and the egg-dying pros, Billy and Molly.

Saturday, April 10, 2004 1:57 PM CDT

Hello to everyone,
After a bit of a crazy morning, we are enjoying a calm afternoon. My father-in-law wasn't feeling so well this morning and since Molly is still neutropenic, Nora and Rolando relocated to my mom's house. This was done to try to minimize the chance of Molly getting sick. We were sad to not have them stay with us but unfortunately, this is the type of precaution we need to take now.

Overall, Molly seems cheerful but still a bit tired. She has dark circles under her eyes. She definitely does NOT like taking the antibiotic she was prescribed but she has been compliant for the most part. Her stomach is "off" again, as she was sick last night and is still not great in that area now.

Earlier today, Billy went with my brother, George and his fiancee, Crystal over to my other brother's house. George and Crystal are in from Florida to celebrate Easter with the family. When Billy gets home later, we are going to dye some Easter eggs with Molly and try to make a treat to bring to Aunt Ro's tomorrow for Easter.

We hope all is well with you.
Love,
D,R,B and M.

Friday, April 9, 2004 2:47 PM CDT

We are home. Molly was discharged this afternoon. Her counts have come up slowly and she is now in the mid 300's. Even though they are up, she is still considered to be neutropenic and as a result, she is still susceptible to infection. So, we won't be joining our family at my brother's this Easter. That's OK though because we are just happy to be home.

Right before we left the hospital today, we found out that one of Molly's cultures was positive for an infection called C-Dif. It's the result of being on such strong antibiotics for quite a while now. To get rid of it, she needs to be on yet another (oral) antibiotic. I hear it's a nasty one so I hope she doesn't give us trouble to take it.

We hope you are all well and we'll keep you posted on what's happening.

Love,
D,R,B and M.

Thursday, April 8, 2004 2:08 PM CDT

Hello to everyone,
I wish there was different news to report, but the story remains the same. Molly's ANC (absolute neutrophil count) is hanging in the mid-100's and the doctor doesn't want to release her until she is moving up to near 500. She needs to be at 750 in order to receive chemo on Monday, so we'll see what happens. She is handling the stay pretty well overall, although she is getting bored and has been asking to go home to "my Billy" and my daddy. Until tomorrow...

We love you and appreciate all of your good wishes and prayers.
Love,
D,R,B & M

Wednesday, April 7, 2004 1:31 PM CDT

OK, we're still inpatient. Same story as yesterday. Her counts are too low to go home yet. Overall, she seems tired but OK. We're really hoping to get home before the weekend.
Love,
R,D,B and M.

Tuesday, April 6, 2004 11:01 AM CDT

Hi there,
We're still in the hospital. Molly's counts were too low for us to go home. Molly will continue on IV antibiotics and we'll see what tomorrow brings. For all of you celebrating Passover, we wish you peace, love and good health. Happy Passover!
Love,
D,R,B and M

Monday, April 5, 2004 12:02 AM CDT

Hi there,
Yesterday we went to my mom's for dinner. While we were there, Molly developed a fever so we went to the ER and were admitted last night. She's on antibiotics and doesn't have a fever now. If she stays fever-free, we hope to be home tomorrow. Wish us luck!
Love,
D,R,B, and M

Saturday, April 3, 2004 11:00 PM CST

Hi there,
It's 12:00 and all is well. The kids are finally sleeping. Molly had a good day. We got to go out to dinner (we meaning Roly and I). It's nice having the grandparents here to play with the kids. Talk to you soon.
Love,
D,R,B, & M

Friday, April 2, 2004 9:23 PM CST

Hi there,
Today we went to the clinic. Molly's counts did not come up enough to get one of the chemo drugs she was scheduled for (IV Methotrexate) but she was able to get the spinal chemo and another IV drug. She was NOT a happy camper this morning, as she was not allowed to eat or drink anything prior to the anesthesia. After she was done in the clinic, she napped a little and then was back to her energetic, happy self. She bounces back so quickly that it really amazes me. She is really enjoying her grandparents, as is Billy. She's also being mischievous and actually hid my car keys under my bed, on purpose! When I asked if she knew where they were, she just smiled and said, "Oh, I'm sorry. They're gone". Rotten!! It took Roly and I quite a while to locate them!

I know some of you have e-mailed or called in the last day or so. I'm sorry I haven't been able to get back to you. It's been a bit hectic. I will do my best to return all calls, etc. over the weekend. Talk to you soon.

Love,
D,R,B & M.

Thursday, April 1, 2004 8:44 PM CST

Hi again,
So, today we went to the clinic. We were disappointed to find out that Molly's counts are too low to get the chemo she was scheduled to receive. She will get part of it for sure and if by some miracle, her counts recover enough, then she will get all of it. The "counts" that I am referring to involve her neutrophil count, which is part of the white blood cell count. When it's low the way it is now, it means that her marrow has not recovered yet from the last dose of methotrexate and it would be too toxic to her system to give her more. However, we don't want to start missing doses of chemo, as we want to make sure that this cancer gets completely out of her system. So, say a prayer and we will put it in God's hands.

On a much happier note, Grandma and Grandpa from Florida arrived this evening with more presents than either of our kids need. They are now watching some of Spy Kids 3D and Billy is so excited to take them both to school tomorrow for Special Friends Day. He has many plans for the two of them. Molly has attached herself to her Grandmother's leg and is thrilled to have her here.

Until tomorrow, we want you to know that we love you. Thanks for everything.

Love,
R,D, and two very happy grandchildren!

Thursday, April 1, 2004 6:35 AM CST

Hi there,
I don't know why yesterday's entry didn't register but it didn't. It was no big deal though because it said that Molly is doing well and seems to be feeling pretty good. Today, we will go to the clinic for a check up to see if her counts are high enough to receive chemo tomorrow. Please say a little prayer that they are at the level they need to be at. Talk to you later.
Love,
D,R,B and M.

Tuesday, March 30, 2004 9:08 PM CST

Hi there,
Today was a calm day. Molly had a lazy and restful day, which was much needed. In fact, she rested so much that she danced her way through American Idol this evening. She keeps us laughing. Billy is doing fine. He is getting VERY excited about his grandparents coming to visit from Fla. on Thursday.
With love,
D,R,B & Molly, the dancing maniac.

Monday, March 29, 2004 6:52 PM CST

Hi there,
Just a quick note to tell you that all is well. We went to the clinic this morning and Molly seems to be doing fine. Her ANC is low and we hope that it comes up enough for her to receive the chemo she is scheduled for on Friday. We went to the Morgan Center, which is always a treat. Lisa arrived safely back in Rochester and we were sad to see her go. Overall, things are fine. Until tomorrow...
Love,
D,R,B and M.

Sunday, March 28, 2004 11:42 PM CST

Hello to all,
Another good day. We are so grateful for UNeventful days! Today we watched Mary Poppins (for the 2,199th time) and continued to perfect our many artistic talents. Molly just loves having her godmother here (and Billy does too!) We're hoping that the week continues to be calm and easy.
Love to you all,
D,R,B and M.

Saturday, March 27, 2004 9:59 PM CST

Hi there,
Today was a BEAUTIFUL day on Long Island. It was warm and mostly sunny. Molly got outside and watched a little bit of Billy's Little League practice. Then she got to play in the nearby park. She seemed to feel great today. She ate like a fiend, more than she has in many weeks. It was so wonderful to see her outside but anxiety provoking too. I worry about her falling and getting hurt due to low blood counts, etc. Still, it was a great day. She is sooooo happy to have "her Lisa" here to play with (and so am I!!)Until tomorrow....
We love you,
D,R,B & Molly the eating machine!

Friday, March 26, 2004 8:58 PM CST

Hello again,
Today was a good day. Molly seems to be feeling well and she ate more today than she had in weeks. Her godmother, Lisa, arrived safely from Rochester to spend the weekend with us. Tomorrow, we plan to set up our own beauty and nail salon at home! What fun! Talk to you all soon.
Love,
D,R,B and M.

Thursday, March 25, 2004 10:14 PM CST

Hi there,
Well, I guess the prayers worked because Molly ate and drank well enough today to avoid going back to the hospital for more hydration. She's still not 100% but she's close. In NY, it's 11:30 pm as I write this and the little princess is still up and about. She had a good day, uneventful which is what we like. She knows her grandma and grandpa from Florida are coming soon and she is excited about it (as is Billy). Tomorrow, her godmother is flying in from Rochester to spend the weekend with us. We are looking forward to some good, quality time.
Many thanks to everyone for all of their comments and good wishes. We have the best friends and family and we love you.
Love,
D,R,B and her Royal Highness, Molly the First (and last!)

Wednesday, March 24, 2004 10:02 PM CST

Today was a good day. We went to the clinic in the morning and Molly received her injection of chemo. We were then able to go the Morgan Center for a little while where Molly had so much fun playing with her friends. Her stomach is still off and we're hoping that it settles by tomorrow or else we may end up back at the clinic and back on hydration. Say a prayer that she is feeling better! Many thanks and lots of love to you all.
D,R,B & M.

Tuesday, March 23, 2004 10:11 PM CST

Hello to everyone,
At the risk of sounding like a broken record, I will tell you that we again spent another full day at the clinic, back on IV hydration. The good news is that Molly's ANC came up enough so that she could get another dose of methotrexate (a chemo drug). The bad news is that her stomach continues to give her trouble. She vomited again yesterday and tonight. It seems like it's at least once a day. It's always so hard to know why. Sometimes it just seems like she gags and then gets sick, and other times I think it might be because she's nauseous from the chemo. The doctor wanted her well-hydrated to make sure that the chemo she received today gets flushed properly from her system. We have to go back again tomorrow for an injection of another chemo medication and I guess they will reevaluate her to determine if she needs any more IV fluids. Let's hope not!
As for the rest of us, the past few weeks have been kind of draining. With so much time spent at the hospital, it's hard to get the chores and tasks of a "normal" life done. We want you all to know how much we really appreciate everything you all have done and continue to do for us. Thank you. We love you.
Love,
D,R,B & M

Monday, March 22, 2004 9:15 PM CST

Hello to everyone,
What a long day we had today. Molly's appointment at the clinic turned into a 6 hour visit simply because it was so busy there today and it took a while to get her medications, etc. Unfortunately, her ANC (absolute neutrophil count) was too low in order for her to get one of her chemo drugs, methotrexate. She got a different medication, which she was scheduled to get, called vincristine. We have to go back tomorrow for another medication and will re-check her counts. She lost a little over a pound from last week, probably because of whatever illness it was that she had. Still though, her eating is an issue. Today she finally felt like eating but she vomited it all right after she ate it, so no major progress has been made in this area. We'll keep trying.
Love,
D,R,B and M.

Sunday, March 21, 2004 10:01 PM CST

Hi there,
It was a pleasant Sunday for us all. Molly seems cheery and more like herself. Although it is late, she is still awake and eating meatballs with a side of banana yogurt. Yuck! We don't care however. As long as she is eating.
Talk to you all soon.
Love,
D,R,B & M.

Saturday, March 20, 2004 11:29 PM CST

Hi there,
Another good and relatively uneventful day for Molly. Hip, Hip Hooray! She continues to try to eat more, although she is still vomiting about once a day and we don't really know why. It's something we have to investigage further. Billy was a busy boy today. He had little league practice, a birthday party and saw his first ballet at CW Post (Alice in Wonderland). We hope tomorrow will be calm and easy.
Love,
D,R,B and M.

Friday, March 19, 2004 9:09 PM CST

Hi to all,
Today was a good day! All of the cultures that were taken to evaluate Molly's stomach troubles have been negative. It is likely that the antibiotics just did a "number" on her poor stomach! Slowly, she is eating and drinking a bit more.
We want to thank everyone for the constant support and love shown to all of us. We so appreciate all of the cards, surprises in the mail, meals, prayers, and the list goes on!! We feel very blessed to have all of you in our lives.
Love,
D,R,B and M.

Friday, March 19, 2004 9:09 PM CST

Hi to all,
Today was a good day! All of the cultures that were taken to evaluate Molly's stomach troubles have been negative. It is likely that the antibiotics just did a "number" on her poor stomach! Slowly, she is eating and drinking a bit more.
We want to thank everyone for the constant support and love shown to all of us. We so appreciate the cards, surprises in the mail, meals, prayers, and the list goes on!! We feel very blessed to have all of you in our lives.
Love,
D,R,B and M.

Thursday, March 18, 2004 10:06 PM CST

Hi everyone,
Today we spent another long day at the clinic getting hydration. That virus Molly has seems to be hanging on (if it is in fact a virus and not just the result of being on such strong antibiotics for a while). Her poor stomach!! Her counts are coming up but they are still low. We are hoping they will be up enough for her to get her next round of chemo on Monday. We will not be going to the Morgan Center tomorrow, not only b/c Molly isn't feeling so well herself, but we don't want to take the chance of exposing another child to a possible illness. Our plans are to stay home during yet another snow storm and play with play-doh and watch movies. Take care and stay warm (if you're in the North East!!)
Love,
D,R,B and M.

Wednesday, March 17, 2004 8:57 PM CST

Hello to all,
Happy St. Patrick's Day! Today we stayed home and tried to keep it calm and easy. Molly is still suffering from diarrhea but it has been a bit less frequent. She has been drinking more and has taken to eating only rice. Tomorrow we go back to the clinic and we're hoping that Molly's counts will be up enough for her to go to the Morgan Center on Friday, as they have a clown coming and will be having a belated St. Patrick's Day party. Until tomorrow...
Stay well.
Love,
D,R,B & Molly McGuarton

Tuesday, March 16, 2004 11:29 PM CST

Hi to all,
Well, so much for avoiding the snow! Today we went back to the clinic for another full day of hydration. Molly still has diarreah. She could have a virus or it could be from the antibiotics she was taking. Either way, the doctor wanted to keep her well hydrated. Her counts are very low so we will try to be extra careful and prevent any more illnesses. Let's see what tomorrow brings!
Love,
D,R,B and M.

Monday, March 15, 2004 9:14 PM CST

Hi to everyone,
Well, Molly started off today OK. We went to the Morgan Center where Molly had a great time with her friends. They made Leprechauns in honor of St. Patrick's day. When we got home, she started vomiting again, although her spirits remained good. She has also had a number of bouts of diarrhea. The doctor wants to see her tomorrow to again make sure that she is not dehydrating. Let's hope that the snow they are forecasting doesn't come!
Love,
D,R,B and M.

Sunday, March 14, 2004 8:52 PM CST

Hi there,
Well, in our lives, no news is good news. We had an uneventful day. Hooray! Molly took her medicine like the good little soldier she is. She is still reluctant to eat much or drink much but we continue to encourage her to cooperate in this area. Hope you all had a good weekend.
Love,
D,R,B & M.

Saturday, March 13, 2004 7:32 PM CST

Hi to all,
Today was a quiet day for Molly. She seems to be eating a bit more and drinking more too. So far, she has been pretty good about taking the wretched antibiotic that she was prescribed. It truly made me gag just to smell it. As gross as it sounds, it actually smells like rotten garbage. She took it though (with the promise of a "present" after-so far she's gotten a few Strawberry Shortcake trinkets). The only thing I noticed is that she seemed flushed today but no hives or fever so perhaps it's coincidental. We will watch it. Billy and I did some shopping and he discovered "Mad Libs". They make them for younger children now and he thinks they are so funny.
Love,
D,R,B & M.

Friday, March 12, 2004 5:49 PM CST

Hi there,
We are back home after another long day at the clinic. It seems that based upon her blood tests, Molly has some type of bacterial infection. She has responded well to the IV antibiotics and is feeling much better. Her appetite is somewhat improved and she started to drink a little more today. She will take another 5 days of oral antibiotics at home. I understand that this medication (Cleocin) does not taste good at all so giving it to her majesty 3 times a day will be a challenge to say the least. To all of you experienced parents out there-if you have any tried and true methods to get kids to swallow horrible medicine, please let us know!! Molly was soooo good at the clinic today. She basically stayed on her bed for about 10 hours and amused herself with video tapes, crayons, sticker books,etc. without one tantrum. She endured lots of hydration, chemo and other medications like a trooper! We hope all of you have a good weekend. We also want to say a special thank you to all of you who have left us words of encouragement, support and love.
Love,
D,R,B & M.

Thursday, March 11, 2004 8:26 PM CST

Hi,
Well so much for quiet, calm and cheery days. Today, Molly woke up vomiting. After her 3rd episode, we went to the clinic where we remained until it closed at 6:30 pm. She got a good amount of IV hydration, as she had not really been drinking. Her blood tests showed that she's fighting some type of infection so to be on the safe side, she again got a dose of ceftriaxzone, an IV antibiotic. She was kind of mushy and not really herself today. We need to go back tomorrow at 7:30 am for more hydration,antibiotics and chemo. I'm hoping that she will be feeling well by the end of the day so that we can avoid an admission over the weekend. Billy for one had a great day. He got to spend it with "Uncle Eddie" doing all kinds of fun things like going to the park, going out for pizza and bowling. Talk to you all soon.
Love,
D,R,B & M

Wednesday, March 10, 2004 8:27 PM CST

Hello to all,
It's about 9:30pm in Long Island and our little princess just fell asleep after watching Pocohontas for the 355,651st time. She had a good day today. She went to school and had fun playing with "the kids" as she says. She seems to be feeling pretty good although her appetite is still rather poor. Today she relied mostly on American cheese for her nutrition. Billy came home from school quite happy today. Due to parent-teacher conferences, he has no school tomorrow and that means no homework tonight. So, after a few hands of "Yu-Gi Oh", he and I watched American Idol. Billy was thrilled that America's choice was his choice too. Billy thinks he has a future in the music industry. Perhaps he does. His running commentary throughout the show is a riot. We are always grateful for quiet, calm and cheery days. Lets hope for another one tomorrow.
Love,
D,R,B and M.

Tuesday, March 9, 2004 5:33 PM CST

Hi,
Today was a relatively quiet day. We went to the clinic in the morning. Molly had a check-up but no chemo today. Her counts are good overall but her ANC (or "Absolute Neutrophil Count") is somewhat low. The ANC is related to a person's ability to fight infections so when that count is low, we just have to be a bit extra-careful about trying to avoid catching a cold and the like. Roly arrived safely in Chicago. Billy actually did all of his homework in the after-school program and he was quite proud of that. He told me he wanted to be all done so that he could watch TV (American Idol of course). Hoping that all of you are well.
Love,
D,R,B & M

Monday, March 8, 2004 8:56 PM CST

Hi there,
Today was a good day. Molly really seems to be feeling better. We were able to go to the Morgan Center where Molly had tons of fun as always. I am still tired and have not yet caught up on all of that missed sleep so as soon as I'm done writing this, it's off to bed I go. Roly is packing for a quick business trip to Chicago tomorrow. Billy is doing well although he always misses his sister when she is in the hospital. He was so happy to have everyone back at home so needless to say, he's not too keen on the idea of Roly being gone for the night. Guess where Billy will end up sleeping tomorrow. Between Molly and Billy, it should be an old fashioned slumber party! Many thanks again to all of you who continue to support us in so many ways. I want to especially thank all of my colleagues, co-workers and friends at the Baldwin School District who continue to be truly unbelievable in all they have done to help us. You guys are the best.
Love,
D,R,B and M.

Sunday, March 7, 2004 7:59 PM CST

Hello to everyone,
We are home. Molly was discharged early this evening. The doctors think that she probably had a little virus but she seems fine now. She had been reluctant to eat or drink but today, she asked for "salad" (yes, green salad with dressing) and a cup of soy milk. Go figure. She actually ate some of it and drank the milk. I for one am so happy to be home and to head to my own bed. Thanks to all of you for your caring and support.
Love,
D,R,B and M.

Saturday, March 6, 2004 9:55 AM CST

Hello,
We had a good night. Actually, any night after a night in the ER is a good night. Molly slept well and seems to be feeling good. We're waiting on some test results and hope to be home soon. The article that was supposed to be in the NY Times last week is in the Long Island Section THIS week instead. There is a picture of Molly with the other children there. It's a nice article.
Stay well,
D,R,B and M

Friday, March 5, 2004 5:52 PM CST

Hi there,
Just a quick note to tell you that last night, Molly developed a fever and so at 1 am, we were off to the ER where we spent the night. She was admitted to Schneider's earlier today so that she could get a few days worth of IV antibiotics and hopefully we'll be home again. Her spirits are good and she seems to be feeling much better.
Talk to you soon.
D,R,B and M.

Thursday, March 4, 2004 8:37 PM CST

Hi to everyone,
Today was a MUCH better day than yesterday. Molly refrained from playing in the toilet and the like. We stayed home and read some books, made some pictures and watched one too many Barney videos. (What is it about that purple dinosaur that kids just love??) Molly seems to be feeling OK, although she didn't eat practically anything. At this age, it's hard to know if she is not feeling well or just being "2". Tomorrow we hope to make it to the Morgan Center for a bit. We learned earlier this week that Molly has developed a sensitivity to the adhesive used in bandaids. She has a welt, which is actually a burn, on her thigh from where she had a bandaid. We're treating it with an antibiotic cream but it doesn't look too much better. I hope not to end up back at the clinic because of that. So for now at least, no more bandaids and instead, gauze and paper tape. Well that's the news for now. Hope you all had a good day. Many thanks to those of you who have left us messages and good wishes. It's always nice to hear from you.
Love,
D,R,B, and the once-again-princess, Molly.

Wednesday, March 3, 2004 8:37 PM CST

Hi there,
Today we went back to the clinic for an injection of chemo. The nurses tell me that the shot does hurt quite a bit and although Molly cried, she got over it quickly. Then we went to the Morgan Center for a little bit. Molly really loves it there. It's such a nice preschool program and it gives her a chance to play with other kids in a "normal" (but very clean!) setting. One would think after all of this that she would be tired and want to sleep but noooooo.....not our girl. Instead, she caused all kinds of insanity at home. While I was answering a phone call, she put herself in the bathroom, soaked a roll of toilet paper in the toilet bowl and then threw the paper around. Not a fun mess to clean up. Of course, first she went immediately to the bath to get scrubbed. Out of the bath, all clean and dressed and onto my bed for a video and hopefully some sleep. Nooooo....not our girl. Instead, she threw up all over her clean clothes and body as well as my bed. Actually, it was my mattress, since the sheets were in the wash from her peeing on the bed earlier. Back into the tub yet again. Does she cooperate at this point? Nooooo....not our girl. She's off and running, naked from room to room, hiding in the closets, giggling and being rotten. Who would have ever thought that I would be yelling at a 2-year-old to come out of the closet already? Once out, she ran right into her room and peed all over the carpet. At that point, I called Roly and informed him that he better not be late coming home so that he could take care of HIS daugher. What a day. Let's hope tomorrow is a little better. Wish us luck! We'll need it.
Love you all,
D,R,B & the little monster aka Molly.

Tuesday, March 2, 2004 10:06 PM CST

Hello there,
Well, another day down and we won't say how many more to go. We'll just focus on "another day down". Molly is doing great after getting a hefty dose of chemo today. Although we were at the clinic for quite a few hours, she maintained her generally happy disposition. When she woke from anesthesia, her first words were, "I want french fries". She certainly ate those fries but not much else. We hope you all had a good day.
Love,
D,R,B & M

Monday, March 1, 2004 8:50 PM CST

Hi there,
Well it was another BEAUTIFUL day in Long Island today. We are all SO READY for Spring to come and stay. Although we weren't originally scheduled to go to the clinic today, we ended up there. While giving Molly a bath (after she rubbed a small tube of Vaseline Intensive Care lotion into her hair and proclaimed, "Look Mommy, mousse"!), I noticed a red swelling on her thigh where she had gotten a shot last week. A long story made short is that the doctor thinks she had a reaction to the bandaid that covered the injection site. For now, we are just putting a topical antibiotic on it and hopefully it will be better soon. Tomorrow we need to be at the clinic by 7:30 am because Molly has anesthesia for the chemo she will receive. Roly took off from work and will be there with us. I'm glad about that. Billy will be excited to go to his buddy's house in the morning before school-a rare treat for him. Wish us luck and we'll be in touch soon. Love to you all.
D,R,B and M.

Sunday, February 29, 2004 4:30 PM CST

Hello to everyone,
Today was a beautiful day in Bellmore. Near 60 degrees. Molly went out to play for the first time in a very long time and she LOVED it. She did fall and skin her knee, which is not normally a big deal but we called the doctor and have to watch it carefully to make sure it doesn't get infected, since her infection fighting ability is compromised now. We're hoping for a quiet evening to relax and watch the Oscars.
Thanks again for all of your support and kindness. It means so much to us.
Love, D,R,B and M.

Saturday, February 28, 2004 11:28 PM CST

It was a relatively quiet day and that's what we want. Molly seems to be feeling a little better. Her stomach was acting up last night but today, she seems less bothered by it. If only she would go to sleep at a reasonable hour at night...Oh well, I guess you win some and lose some. Until tomorrow...

Friday, February 27, 2004 3:33 PM CST

Hi all. Today we went to the clinic. We were there for about 4 hours. Molly's counts went up, thanks to the daily injection of neupogen that she has been receiving. As long as her counts remain high, she will start the next phase of chemo on Tues which includes "intrathecal methotrexate", or methotrexate given directly into the spinal fluid. She is under sedation for the procedure and doesn't remember anything after it's over. She has been a little cranky and seems to be fighting a little runny nose. Let's keep our fingers crossed that she doesn't get sick. For those of you who asked, we added pictures of Big Brother Billy in the photo section of the web page. Thanks for all of the kind comments and encouragement left in the "guest book". We are very lucky to have such support and good people in our lives.

Thursday, February 26, 2004 8:12 AM CST

Hello to everyone. It is a little after 9:00 am and Molly is still sleeping. She has been going to bed so late. She is feeling OK overall although her counts are very low and we can't go to school this week. There should be an article about her school, the Morgan Center in the NY Times on Sunday in the LI section, so look for it. Maybe there will be a picture of Molly! We hope this web page will be a good way for us to all stay in touch. We would love it if you sign the guest book when you visit and leave Molly (and Billy) a little message. Billy will probably enjoy it more than Molly will! Well...off to shower before she gets up and gets going. Love to you all. D,R,B and M.

Thursday, February 26, 2004 7:05 AM CST

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