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Molly's Journey of Hope 
Molly on the first day of school in September
Welcome to our Child Web Page. It has been provided to keep people updated about our daughter, Molly. Molly was diagnosed with a form of childhood leukemia, pre-B Acute Lymphoblastic Leukemia (ALL), on November 10, 2003. Her white blood cell count was very high at diagnosis and by the time she received her first dose of chemotherapy, her count was about 150,000. (A normal white blood cell count is between about 5,000 and 10,000.) Due to the high white count, Molly was placed into a "high risk" group. Despite the "high risk" classification, her prognosis is good. Her course of treatment involved 30 months of intensive chemotherapy on a protocol specifically designed to treat "high risk" children. She was on Arm C of the CCG 1961 protocol. So far, Molly has responded very well. She completed her treatment in March of 2006. She is doing very well. We hope and pray that she remains cancer-free for the next 5 years, as after that, she can be declared, "CURED"!
Molly is a spunky, funny, happy and resilient little girl. She is a true "girly-girl" and loves nothing more than something to do with make-up, jewelry, dress-up and the like. She has handled so much with the fortitude of a giant. Please keep her and all of the children suffering with cancer in your prayers.
On March 29, 2005, Molly's (and Billy's) dad and my husband died in an accident on his way to work. There are no words to describe how profound a loss this is and how much we all miss Roly. Please pray for our family as we struggle to adjust to life without Roly and as Molly continues on her journey to win the battle with leukemia.
To all of you who are thinking of us and praying for us, we are profoundly grateful to you.
With much love,
The Guarton Family
Journal
Monday, December 10, 2007 10:20 PM CST Hello everyone! Happy Holidays to all of you!
I know you thought this day would never come…a new update but finally, here it is! I have to tell you that it was not a conscious decision to stop writing but obviously, that is what happened. I think in retrospect, I just needed a break for a while…I was tired and drained and just felt like I needed to move on but it really wasn’t my intention to leave all of you who care about us behind. Truthfully, I intended to write much sooner but more and more things kept happening and coming up and well, you know the rest of that story. So, my sincere apologies to anyone who felt left behind…forgive me.
So, here we are in December. I’m going to give you the “Cliff Note” version since it’s been so long since I’ve written.
Miss Molly…Overall, she’s doing great! She is growing so much…taller by the day it seems. She’s as funny and witty as ever. She keeps us all in stitches. She’s a big first grader now and I wish I could tell you that she’s totally in love with school but that isn’t exactly the case. She *likes* it…quite a bit I think…but she hates to get up in the morning. It seems as if almost every day, she’s throwing the covers over her head and yelling at me that she’s too tired to get up and “just needs a vacation.” She sounds like a teenager already. I think first grade has been a big adjustment for her. She has a good teacher but the teacher is very strict and that has been a lot for Molly to adjust to. She was used to be being the “queen bee” in preschool and she had a very nurturing teacher in kindergarten. Molly describes her current teacher as “stubborn.” When you ask her why she thinks she’s stubborn, she tells you, “It’s her way or no way.” Well, at least she has the teacher figured out somewhat! Academically, she’s doing great. She is reading beautifully and loves math too. Her greatest challenge is in the area of writing. Her fine motor skills are really progressing but it is still hard for her to write neatly and with consistently sized letters. She is going to occupational therapy outside of school once each week and I think that it is helping. Molly’s teacher has also really been doing a wonderful job helping her to progress in this area. From what I understand, challenges in the fine-motor area are often seen in children who have had the type of chemotherapy Molly endured. Socially, Molly seems to be doing great but then again, that was never really an area of concern for her. She has many friends both in and out of school. She (and Billy) are both in the after-school program and they really seem to love it. They do a lot of nice activities there. With regard to extra-curricular activities, Molly is dancing up a storm. She is taking 3 dance classes…one is a tap/ballet combo class, one is a jazz class and one is hip-hop. She really, really loves to dance! She has been begging me to sign her up for Irish-step dancing lessons…maybe next year. She continues to take piano lessons and even brought a tip jar to my brother’s house on Thanksgiving. She figured if she was going to be asked to play, she might as well get a little something for it! Molly also joined the Brownies this year. She really likes meeting with the girls and doing all of the different activities offered, especially the arts and crafts. Medically, the big picture is really good. She continues to be in remission and of course, we are all so relieved and grateful about that. That said…she has had a few bumps along the way, especially since September. Some of you will remember that Molly has a history of some pretty significant nosebleeds. Well, these started again and they were very bad in the fall. Her hemoglobin dropped substantially from the amount and frequency of the bleeds and we ended up back and forth to the hospital quite a bit. Molly has missed quite a few days of school because of this (and yes, she still complains about going and is looking for more time off…lol). She even had one inpatient stay because the bleeding was so significant. *That* was a surreal experience. We were back on the hem-onc floor with the nurses we know and lots of familiar things surrounding us yet it was so very strange to be there and understandably, unsettling. Molly had an extensive work-up done and is now under the care of the hemophilia clinic at our hospital. She has a Factor 7 deficiency (Factor 7 is a clotting factor) and from what I understand, that puts her in the category of being a “mild” hemophiliac. So…it’s never dull around here. While there is nothing to “cure” a person of a congenital clotting deficiency, there are things that are done to manage the condition. When Molly starts with the bleeding and it gets significant either in the amount or frequency of the bleeds, she takes an oral medication, Amicar, to help her clot better. Amicar has to be taken around the clock every four hours so when she’s on that, the sleeping isn’t so great here. If the Amicar doesn’t help to get things under control, then Molly is given an IV medication called Novo 7 and that has worked like a charm. She’s only had to have the Novo 7 a few times since September, so that’s a good thing. Even though the chronic nosebleeds have been a big pain, it is still not nearly as bad as it could be so we’ll take it and try not to complain. Because of this Factor 7 deficiency, major contact sports are out but that probably won’t be a big issue because I can’t see Molly playing football or hockey or that type of thing. She is allowed to continue dancing and can do all of her regular activities. So that’s the medical news and the summary on La Princessa!
On to Billy…Billy is now 11 years old. His birthday was on 11/25 and I can’t believe that my baby is such a big boy already! When people tell you that the time goes by quickly, believe them! In fact, I think it’s going by too fast! Like Molly, Billy has grown like a weed. He’s over 5 feet tall and is wearing a men’s size 8 ˝ shoe! (Roly had a size 15 foot…I think Billy might be following in those gigantic footsteps!) He, unlike his sister, is totally in love with school this year. That is because he has the most wonderful, kind, funny and interesting teacher. She has been such a blessing to Billy. Fifth grade in New York is a hefty academic year. There are lots of state tests and that always provokes some anxiety for Billy but his teacher has been fabulous in helping him to deal with things in stride. Academically, Billy has been getting great grades. He *could be* a straight A student with a little effort but Billy still needs to mature a bit in his understanding of why his education is so important. This year, he discovered Harry Potter and has really enjoyed reading the series. I am happy because it has been a turning point for him to stop saying that he doesn’t like to read. Now, he can’t say that anymore! He understands that he just has to find a book that interests him. Billy has been busy with lots of activities outside of school too. He played baseball in the spring and even pitched a bit. He is now playing basketball and loves it. He is on an intramural team as well as a CYO travel team. There are lots of practices and games but he likes it so much that it is worth it. He continues to bowl on a league and he is getting quite good. He is still in Boy Scouts and will be bridging over soon from Cub Scouts to being an official “Boy Scout.” Billy took a computer class this fall after school in which he learned to make a digital photo book. He asked for a digital camera for his birthday and he really seems interested in taking photos. (Of course, most of his photos are silly ones of his friends, the dog or his sister but who knows where that will lead?) Billy is also taking drum lessons. I think he started taking them because Roly was a fantastic drummer and he wanted to do something that would connect him to his dad but now, he seems to really like the drums in their own right. He played the bass drum in his holiday concert and did a great job. He also sang in the chorus and did really well with that too. He is really beginning to mature and each day, he reminds me more and more of Roly. That usually brings a smile to my face and I think if Roly was here, he would be laughing along with me.
As for me, where do I start? Overall, things are good. I am in a much better place emotionally than I was a year ago. I have some genuinely happy times now but my heart still aches and I am beginning to understand that this is the way things are probably always going to be…bittersweet to some degree. As much pleasure as I get from doing things with the children, I can’t help but wish that Roly was here to witness these things first hand along with me. Even when I’m happy and doing something for *me*, like chatting with the girls in my book club or shopping with a friend, I am frequently reminded that I am on my own…no longer part of a whole but a “half” on her own. Interestingly, just about all of my friends my age are married or in committed long-term relationships. There aren’t really too many “single” moms that I am friends with or with whom I would care to do things with on a social basis. It’s just all a big adjustment and one that I keep growing into day by day.
On a different note, in September, I decided that it didn’t make sense financially to keep Chelsea on as a full-time, live-in nanny when the kids are in school all day, every day. However, we were not ready to say good-bye to Chelsea either. So, she is now working for another family as a live-out nanny but she still lives with us. Sometimes, she helps out and baby-sits or runs errands for us but mostly, she is working for this other family. I feel like she is a relative living with me and it’s been really nice to still have her around. For the most part, not having Chelsea work for us has been OK but there were things that Chelsea did during the day that I had to get back into a routine of doing…like laundry and cooking and cleaning…oh my! I *do* have help with all of this though. My mom retired in June from teaching so she and my dad have been around a lot, often with a prepared dinner in hand. When they’re here, they are always willing to lend a helping hand. I just recently hired someone to help me with the household chores and that has been going well so far. She has also been helping with Buddy, our dog. She lets him out and tends to him during the day so I don’t have to run home from work at lunchtime to take care of him (which is what I had been doing every day. Ugh!) Work for me has been extremely busy. I am in the same two elementary schools I was in last year but the work load is tremendous and the cases never stop coming by my desk. That is a mixed blessing. On the positive side, the days fly by and I am *never* bored but on the negative side, there is a tremendous amount of pressure to get things done quickly and to meet all kinds of crazy deadlines. My two principals couldn’t be nicer though…they continue to support me and have been so understanding of all of the time I had to take off to take care of Molly with her nosebleeds. I have also been working in my private practice but on a rather limited basis. I only have a few regular clients and that is just the way it has to be for now. Without Chelsea’s help, I need to be around much more to chauffer, help with homework, etc. I love seeing clients though and I’m sure that when things settle down somewhat (in a decade or two…lol), I’ll get back to working in the office more often.
As for the current events in our household, holiday preparations are in full swing! The outside lights are up and that was a joint effort between my dad, my father-in-law and me. Roly’s parents were here for a visit at the end of November and we had a great time with them. The kids are always so happy when they are here and we were able to share in some of the Christmas decorating with them. The tree is up and I have to say, it’s “beginning to look a lot like Christmas” around here. I have a good chunk of shopping done but I’m not done yet. I guess this weekend I’m really going to have to power-shop and get it all done. The kids wrote letters to Santa and of course, what they said they wanted earlier is not on their list now…sigh. Oh well, I guess I’ll be returning some things and looking for some others. This past weekend, we went into NYC and saw the Little Mermaid on Broadway. Thanks to the generosity of a donor from our hospital, we were picked up by a limo and got a ride right by the tree at Rockefeller Center. Then we were off to the show, which had the most *amazing* sets and scenery. You really felt like you were underwater in this show! The kids really enjoyed the whole experience and we are very grateful that our family was selected to enjoy this special holiday treat. Usually, I take the kids to see a local production of the Nutcracker but I just haven’t had a moment to go get tickets. Oh well, maybe next year.
Well, I guess that’s it for now. After the New Year, I am going to look for another venue to post updates about our family. Caringbridge has been WONDERFUL for all of these years but now that Molly is doing well and thank God, is off-treatment, I feel like it’s time to find a new way to share with those who are interested what is going on in our family. Sooooo….if any of you out there know of a good “blog spots” and the like, I would love to hear about them and get your suggestions.
If I don’t update again before the holidays, which we know is a good possibility…lol…though I’ll try, I want to wish each and every one of you from the bottom of my heart a very blessed, peaceful and joyous holiday season! May only good things come to you and yours.
Here are a few pictures for you to enjoy:
Billy before his holiday concert.
Molly with her new Hannah Montana Game from Grandma and Grandpa from Florida.
Molly and Billy on Billy’s birthday.
The three of us on Thanksgiving.
Billy, Molly and their cousins with my parents on Thanksgiving.
Molly and her cousin Sophia at Billy’s b-day party.
With much love and appreciation always,
Donna
Read Journal History
Hospital Information: Patient Room: Home Sweet Home Schneider's-LIJ
New Hyde Park, New York
718-470-7000
Links: http://www.themorgancenter.org A special preschool for children with cancer
http://www.makeawish.org The Make a Wish Foundation
http://www.gktw.org An amazing place to stay in Orlando for
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