Archive for March, 2008


What would you look like BALD? Like a HERO to kids with cancer.

PERFECT VIDEO/PHOTO OPPORTUNITY!! A Reporter Invited to Take the “First Swipe!”

From the event organizer:
Annike Houtz
cell: 727-593-4845
annikeholland@verizon.net

WHEN: Saturday, March 22nd
3:00 – 5:00 PM

WHERE: Tim’s Barber Shop
2527 M.L.King Dr. (9th Street North)
St. Petersburg, FL 33704

WHY: St. Baldrick’s is an international foundation dedicated to funding research for pediatric cancers in a wholly unique way. At this event, along with many in the US during the month of March, heads will be shaved in honor of the brave kids who are battling cancer.

WHO: This team is one of the top two teams in all of Florida and have raised nearly $24,000!!! A mother of a girl and a father of a boy whose children both have Leukemia and eleven men from Bankers Insurance others will all be getting their heads shaved in solidarity for children who loose their hair during cancer treatment.

WHAT: Many families will be attending who’s children are undergoing cancer treatment and will be available for interview. Thanks to DKMS and
Driving for Donors there will also be a free Bone Marrow Drive!

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Wednesday, March 19, 2008, 11:58 PM

Yesterday Adelaine has part two of her sinus surgery. She had a lot of anxiety about it this time. She was very upset and crying and kept repeating “I don’t want to have a surgery” over and over the entire morning. She went on to explain exactly which parts she didn’t like about it too! The biggest hurdle was the actual part of being put to sleep. This time she decided that she did not want either the mask or the white “milky” medicine that they push through her port to put her to sleep. While we were getting ready I kept thinking, “How can this be my life?” “I have a three year old who is crying about having surgery and explaining with educated detail why she hates it so much!”

Once we got there, and after giving the Anesthesiologist a very cold shoulder, she made it through! I did get the Oncologist to agree to do both her sinus surgery and her spinal injection of chemo both at the same day, so Adelaine wouldn’t have to go through all this two days in a row. I am sooo thankful that worked out! Hopefully she won’t have to be put to sleep again for three more months. Then once more after that and we will be all done!!!

She keeps saying how she never wants to have surgery again, so we’ve been talking today about getting her port surgically removed after she is all done with treatment. She remembers me telling her how they put her port in and has figured out that they must be taking it out in much the same way. She seemed intrigued that they will be cutting her skin to get it out and sewing her back up. (She knows that’s why she now has a scar!) I told her that the doctor will give us her port and she can soon hold in her little hand, what is now inside her body! I for one can not wait to have the port out and on her nightstand that first night! It will mean that ALL this is really over, and she will have her freedom once again to live a “normal little girl” life!

Doctor Orobello, her ENT, has been so wonderful throughout all of this. I have decided to give a name to those rooms where you wait while your loved one is in surgery. I’ve called it the Vulnerability Room! There is nothing that slows time down quite like waiting for your child to get out of surgery. It seems like every minute that goes by is really more like an hour. Tick……….tick……..tick. Then you think you hear the doctor coming, but it turns out to be someone else going to their Vulnerability Room to wait their fate. Finally after seemingly hours go by, the doctor comes in, his next words could be great or they could change your life forever. The next second could become one of the highest highs or the lowest low of your life. Before the doctor ever speaks a word you are doing everything you can to try and read what he will say next. The only way I make it through sitting in that room is knowing that God loves me and my precious daughter and no matter what He’s going to be there with me, holding my hand, and hers!

After three recent surgeries, this time my meeting with Dr. Orobello in the Vulnerability Room was far different from the first one, and far better. He came in, (not with the cup of coffee in his hands like last time, which would have been cool because I would have known right away that everything went well. Like I’ve said before, it’s not like a doctor is going to come into the V. room and say, “I’m sorry but you daughter didn’t make it through surgery, but on my way in, I stopped off and grabbed myself a fresh cup of hot coffee! No, that’s not likely to happen!) Anyway he said that everything went well and that her infection is 100% GONE! We went from him being very concerned that this infection could take her life, a few weeks ago, to the infection being 100%GONE! WOW! We are so thankful, thank you God!

Although, two days ago Adelaine had Vinchristine injected into her port, (which is an extremely powerful and harsh chemo), a second sinus surgery (in two weeks) on yesterday, along with another harsh chemo injected right into her spinal cord, another five days of steroids began (as of yesterday as well), plus tonight she restarted her oral chemo, TODAY WAS A GREAT DAY FOR HER! She played so hard with all her toys and we spent the entire day at home. After her first sinus surgery she began snoring horribly. Finally about 4 days ago, the snoring completely stopped. Even after her second surgery yesterday, she is sleeping peacefully and quietly in her bed. She looks great too! Her color looks rosy, and her counts are back up. Through all this since her hair started to grow back last year, I have not seen, or felt, or found one single strand of her hair that has fallen out! Looking at her know, no one would ever guess all that she has been through. The only thing would be her tiny little port scar over her heart. That is her battle scar and we are all VERY proud of it!!!!!

Thank you for praying for Adelaine. God has heard and God has answered!

Ang

PS The fashion show was amazing. I will post pictures soon. Adelaine has discovered that she wants her ears pierced. She decieded this after the first fashion show a few weeks ago. Every day she’s asked about it. I told her about the needle that would be involved and how it might hurt. She stuck her chin out and said, “I can take it”! And you know, I bet she can!!!! Maybe that could be one of her end of treatment rewards. It seems ironic to me that after being stuck so many times that she will be rewarded with yet another stick!!! Isn’t that life?

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I got to thinking and I just want everyone to know that we would never risk exposing other people, especially Adelaine’s little friends from the Children’s Cancer Center with something that would be contagious to them. Here is a link that confirms exactly what we were told about Adelaine and the Streptococcus Pneumoniae, “Once her fever breaks and she has been on the antibiotics for 24 to 48 hours then she is no longer contagious”.

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Home Free!


Adelaine had a big day today! We went to Bowen’s fieldtrip to the library to see Dr. Seuss’ “The Cat in the Hat”. Then we went back to Bowen’s school and spent the day there. Bowen just loved us being there for his very special birthday! Tonight we didn’t make it to dance class because Adelaine went to bed extra early as she didn’t get a nap in at all. Tomorrow she and her guys have a triple dental appointment in the morning, so Little Miss Adelaine won’t make it to pretend school. I know she will be sad about that, but tomorrow night when she sees everyone at the Fashion show she will be delighted!

Adelaine had had Sreptococcus Pneumoniae for a very long time, so now that we have gotten to the bottom of it, she is already starting to bounce off the wall! If only she was completely healed from her surgery, that’s all that is holding her back now. She already has so much more energy than she’s had in the since I can remember. It has been four days now that she has been fever free and she looks and feels great! Today her cough was completely gone and the doctor said that we didn’t need to do the breathing treatments as long as there was no cough. We are so pleased with the progress she’s made and are so thankful that the ENT insisted that we do surgery. It was most definitely the right thing to do.

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We just got home late this afternoon. Adelaine is doing much better although she still has a pretty severe cough. She has 21 days worth of two different antibiotics to take and will be on a nebulizer for breathing treatments twice a day to help with wheezing. She still has not made her counts and will remain off chemo another 8 days. This will make 3 weeks of no oral chemo, but she did have the Vinchristine in her port last week and will get another dose on the 19th regardless of how her blood levels are. Apparently her bone marrow is not producing, either because of the sinus infection or from the previous chemo she’s taken. So the doctors are not concerned with her going so long without receiving daily chemo.

Right now she is bouncing around the house playing her Bella Dancerella ballerina interactive dance DVD! She has her little bar and is practicing up for her dance class that she is supposed to take tomorrow night. I seriously doubt that we will be going, but shhhhh we are on a need to know basis on that one!

Tomorrow is Bowen’s birthday, and he is very excited! We will be celebrating some tomorrow but mostly this coming weekend. On Tuesday evening Adelaine has her second fashion show! In preparation we were chauffeured to and from Saks Fifth Avenue so Adelaine could choose her dress and have her hair, nails and makeup done. Mom got a little pampering also with makeup and a nice message, ok and a glass or two of Momosa! It was an amazing day. Also our driver, Michelle, and I really hit it off. She does volunteer work with the Pediatric Children’s Foundation, who the show will be raising money for. After we left Saks, we went out to a nice lunch and she and I have stayed in contact. She is an amazing person and we are so blessed that she is now a part of our lives. Also she is a ballet teacher and has invited Adelaine to join her class, which Adelaine is so looking forward to tomorrow! Adelaine’s nose still bleeds from her surgery when she overdoes it, but I really don’t want her to be disappointed and miss out. I’ll pray about it and we’ll see.

At the show on Tuesday they will be unveiling the Mother/Daughter portraits we had taken a few weeks ago. It was an incredible experience working with Pepito, what an AMAZING photographer! He is well renowned and has won quite a few awards. He must definitely be living his dream! I’ve never seen anyone so passionate about thier job. He made sure that every click of his camera was a work of art, paying attention to each little detail. He insists that everyone wear black during the photo shoot. He captures a person’s sole on camera, that’s the best way to describe his work! Adelaine and I had a great time working with him. You can see some of his work at http://pepitoportraits.com/ If you click on burnished sepia, then “Award Winning Portraits” you can see Dana Burtoch (during her treatment for NonHodgkin’s Lymphoma) and her mother Kay, our good friends from the CCC. It is title “Faces of Hope”. Dana is now four years out of treatment. Her story has certainly offered us and so many others a lot of hope! I can not wait to see the portrait of us he chooses for the show. After the show we will be able to bring it home and hang it on our wall!!!! What am amazing gift.

During Adelaine and Liem’s fundraiser, my friend Kristen who is a teacher at Eckerd College asked a few of her students if they would be interested in dressing up as Disney Princesses and attending the event. Some of those wonderful girls who were there, plus a few more, are working on another project for school. They had to take some money that they were given and use it to make a difference. They thought of Adelaine! So, I got with them with some different ideas on how to help not just help Adelaine but a lot of other children suffering from cancer. They’ve decided to help pay for the framing of the Pepito Portraits that will be given to each of the girls’ family that are in the show! What a special way impact our lives. These memories will be a part of our families forever. I know every one of us will be blessed by such a caring group of girls!

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