Parentology with Paula – Charlotte’s Story
This morning, Charlotte's Story aired on channel CW15 Albany on the Parentology with Paula show.
We had been interviewed by show reporter Aliz Koletas toward the end of February, in what was a great sit down interview style recording. We covered all that we went though back at the start of 2009, just two short years ago.
We are thankful for the opportunity to be able to share Charlotte's Story, and are grateful that Parentology with Paula gave us that opportunity. Thank you!
TEAM Charlotte: Dr. Kathy Braico of Adirondack Pediatrics
A number of folk have asked how Charlotte's cancer was diagnosed, so I have added a page to the TEAM Charlotte website that explains this a little more, and gives thanks to the doctor that discovered this.
You can read more about this here, http://www.tobyandjoann.com/charlotte/how-hepatoblastoma-cancer-was-diagnosed/
CHARLOTTE UPDATE: February 15, 2009
Sorry for the lack of updates since the middle of the week. JoAnn and I have both been sending updates to FaceBook.com from our cellphones, so hopefully everybody that has FaceBook and has us listed as friends will have gotten these updates.
Anyway... on Thursday afternoon we (JoAnn and Toby) met with the Oncology department to talk about what we are facing, schedule for chemotherapy and just generally about everything. This was a good time to learn much about this, but there was a lot of information to take in.
This type of cancer is known as hepatoblastoma. This is a very rare type of cancer that is found in children under the age of 4. There is an average of 100 children a year in the United States that are diagnosed with this cancer, and found early (like we have done here) there is a 90%-100% success rate with chemotherapy treatment.
We now understand better why the Oncologist was excited about this on Monday and asked us to donate the tumor for research. Being that this is so rare, the opportunity to lab test an intact tumor is also very rare. JoAnn and I did not hesitate to say yes to this request, and hopefully this situation will help bring some assistance to another little child in the future.
On Friday (Great-grandma Beryl's 89th birthday, by the way), Charlotte underwent a second surgery to implant the port that will be used from now on to administer the drugs to her. This is SO much better than having to have multiple IVs being stuck into her little hands each time we come to the hospital.
This surgery was performed by the same Pediatric Surgery team that did the liver resection on Monday, and Dr. Georges (the surgeon) was especially pleased afterwards, saying that Charlotte is pretty much text-book to operate on! Our perfect little angel, even in the rought times she is perfect 
Photos
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On Friday evening, Uncle Ricky and Aunt Loey came back to visit. Uncle Ricky is a screen printer (http://www.adkscreenprint.
Photo
http://www.facebook.com/photo.
Also on Friday evening, Mommy's good friend Ashlee stopped by. She works with Mommy at Travelers Insurance in Glens Falls. It was really good to spend some time with her. She brought a stuffed bear from their co-worker Michele, and a Valentine's Day card from Deacon, her 9-month old son! So cute! There were some other gifts, thank you to all who sent. Also, the staff at Travelers had taken up a collection and raised over $200. We thank you all so very much. This outpouring of love is truely appreciated very much!
Charlotte had her first session of chemotherapy on Saturday, Feb 14 (Valentine's Day). This was the start of four 3-week cycles, that will require both inpatient hospital stays, as well as outpatient clinic visits. The inpatient stays will involve 2 or 3 nights in the hospital, every three weeks or so. This will put an added expense on us both emotionally and financially.
She responded well to the drugs yesterday, and after the first 4-hr session of Cisplatin (http://www.cancer.gov/
On Saturday evening, Peter and Phyllis Morreale (church family from Corinth Wesleyan Church) stopped in to see us. This was a time of good fellowship, and we truely thank you for driving all the way down here to visit. Thank you! We are a little sorry that we had to push you off when Charlotte was getting fussy, but we love you both and appreciate you!
Aunt Melanie (JoAnn's youngest sister) also stopped in. This was great to have her here, and Charlotte just simply adores her Aunt Mel. We love you Mel! xxxx
Today, Sunday, she is much more tired and is currently resting in bed. She had some nausea during the night, while Granny Meryl was on night duty. This has subsided now, but a combination of two surgeries, many drugs and just the simple fact of the emotional toll on her precious little mind and body has exhausted her.
Since the last update e-mail we have also relocated from the hotel that is directly across the street from the hospital, to the Ronald McDonald House, which is about a half-mile away. The reason for this is that at $135+ a night, the hotel was worth the convenience the first few nights, but we simply could not afford to continue staying there.
The Ronald McDonald House Charities is an amazing organization. We were simply blown away when we walked into the house (actually two big old Victorian houses that have been joined together), and saw the outpouring of love that has gone into setting up this facility that provides accommodation and meals for immediate family of ill children, for minimal requested donations per family, per night. Some folks are not even able to afford this, and thankfully this organization does not turn any family away.
I know that we all have seen the "Ronald McDonald House" collection boxes at the registers in our local McDonald's Restaurant, and I know that from now on our change from meal purchases at "Mickey D's" will go into that box.
Also, any funds that we collect above what we need to help with things like medical co-payments, travel, housing here at the hospital, etc., we will be donating to the "Ronald McDonald House Charities of the Capital Region" (http://www.rmhcofalbany.org/) when Charlotte's treatment as been completed.
Without this charity we would either be spending more than $1,000 on accommodations, or commuting 120-miles a day to get to and from the hospital. There is also a volunteer cooked and freely provided dinner at the house each night. Last evening it was a local Volunteer Fire Department who cooked and made baked chicken, mac-and-cheese, cookies, cup cakes, and loads more. Having this food available to us also helps cut our financial needs by giving us one meal that we don't have to purchase in the hospital cafeteria. Unfortunately, the need to buy some food onsite will start to add up as we have to stay for multiple days. Spending $20-30 dollars a day for both of us to eat has started to add up fast.
We really do not wish to ask directly for help beyond prayers and thoughts, but we have been completely honest with everybody up to this point through these news updates, and by not exposing our potential need for help we would not be giving you the full information. If you feel you would like to bless us with a donation for any out of pocket expense while Charlotte and us are going through this time, please click this link. Any funds that we receive will either be used to help pay medical co-payments or help with food and accommodations while we are at the hospital, now or during future inpatient stays. Only one person is allowed to stay in the ward with Charlotte, so having the ability to donate some funds to the RMHC for use of a room in the house is a blessing all around.
Once again we thank you all for your messages of love and support. Our teams of prayer warriors have been a great blessing too! We would really love to respond to everybody individually, but have obviously not found the time to do this yet. Your kind words and prayers are honestly part of the strength that have held us both together this long and emotional week. Thank you!
With much love to all,
Toby and JoAnn (and butterfly kisses from Charlotte too!)
xxxxx
Charlotte Update, Surgery and Recovery: Day 3
Dear Family and Friends!
So... another up and down day. Very emotional. The day started with Mommy pulling the overnight shift, giving Daddy the time to grab about 6 hours of sleep. The different groups of doctors from the various departments made the rounds and it was determined that the epidural could be removed. This was done at about 3:30pm and she was switched on to IV pain killers. This was great big step forward.
This morning we also had a visit from Pastor Dick Engert (Corinth Wesleyan Church, our home church). This was a really good visit, and towards the end Charlotte was starting to fuss, so Granny, Daddy and Pastor relocated to Starbucks across the street for a time of really good fellowship. Thank you Pastor for taking time to come visit. Much appreciated!
Most of the afternoon was spent with Granny and Mommy in the PICU, and Daddy relaxed in the Ronald McDonald Family Room (which is the Ronald McDonald House Charity's on site family waiting area for PICU and NICU families - fantastic charity!).
Granny stayed with Charlotte, allowing Mommy and Daddy to go down to the cafeteria to have some dinner. On the way back to the PICU was where the down part of the day started.
As we came back to the PICU we met Dr. Pearce (Pediatric Oncology) and she told us that the results had come back from the Pathology Lab. With a sorrow and heavy heart we have to say that the type of cancer in the tumor that was removed on Monday is of a type that could return. This will require a course of chemotherapy to act as a preventative measure to reduce the risk of this happening. At this time she is cancer free, I repeat there is not cancer right now and chemotherapy will be done as a preventative measure to ensure that the cancer does not return. Naturally, all of this will require much visitation to the Pediatric Oncology department here at Albany Medical Center, not only over the next few months for chemo, but the next few years for follow up testing to ensure that nothing has returned.
We will meet with Dr. Pearce sometime tomorrow (Thursday) to learn more about what will be involved. This will be a hard time, and we have had a very emotional evening.
Anyway, on a joyful note to follow up the down part of this e-mail, Charlotte is not only sans epidural, but is also now sans Foley catheter, the latter being removed this evening at about 9:00pm. This evening Eric and Lois Melito (Uncle Ricky and Aunt Loey) came to visit at about 6:00pm. This delighted Charlotte to no end, and during this time Charlotte was allowed to be picked up by Mommy! This totally turned her demeanor about and she is suddenly full of life now. She had major cuddle time with Mommy, Daddy and Granny! We are all so much happier, and after the bad news of the evening, this was exactly what all four of us, including Charlotte needed.
We will update again tomorrow when we know more about the upcoming treatment and what we will be needing to do. I will be posting photos and video from today on Facebook. I will also post links on our blog for those that do not have Facebook access.
Thank you all for your continued prayers and thoughts! We truly appreciate every single one of you.
Much love to all.
Toby and JoAnn. (and Charlotte too!)
xxxx
Charlotte Update, Surgery and Recovery: Day 1
Dear Family and Friends!
Some of you may have seen this information previously in the day (on Facebook, blog, e-mail, SMS, or one of the other multitude of ways we all communicate). We are very thankful to all you have posted or sent us messages throughout the day. Huge THANK YOU!
So... We arrived and checked in at pre-op around 8:45am. We left Granny Meryl in the family waiting room and accompanied Charlotte back into the Pediatric Surgery OR Suite (they have 25 ORs). Once we got her ready, she played and was actually having fun, even though her diapered butt was showing!
Photos
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Here we met with the Anesthesiologist (Dr. Ana ???? from somewhere in Eastern Europe!) who discussed in detail about what was going to happen with sedation. We then met with Dr. Georges (the Pediatric Surgeon), who talked to us about the operation and what to expect.
They marked her to show where the surgeon would cut, to ensure that no mistakes are made.
Photo
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At about 10:00am they came and said that they were ready, and Toby carried her to the outer OR (or whatever they call it), where anesthetic was to be administered.
Photo
http://www.facebook.com/photo.
Daddy stayed with her for about 5-mins while she went under, and then returned to Mommy. We then went out to join Granny in the waiting area. By this time Gramma Dar had arrived too.
At about 11:30am we were told that surgery had started. Dr. Pearce (the Pediatric Oncologist) appeared in the waiting room at about 12:15pm, in surgical gowns, and told us that Charlotte was doing well. She said that Dr. Georges had called her down to come have a look at the tumor. At this time she told us that they felt it was cancerous. This is definitely a word that sparks your attention!
She went on to mention that the tumor was indeed encapsulated, and that the whole mass was removed without incident, and that Dr. Georges was now starting to complete the procedure. Dr. Pearce explained that she had sent the mass to the Pathologist for testing to determine the type of cancer. Based on these results (we should have them in a couple of days), and also the results of blood tests over the next few days will determine what further action may need to be taken.
If these results do come back showing that further action is needed, then it is possible that chemotherapy may be required. THIS HAS NOT BEEN DETERMINED AT THIS POINT THOUGH.
At about 12:30pm Dr. Georges came out and said that Charlotte was doing very well. He told us that the procedure was faster than thought because the tumor happened to be right there when he made the incision, almost like is was saying, "Hey! Here I am. Take me!". This allowed him to remove it all in one go. Charlotte also didn't require any blood transfusion, which is obviously always a concern with liver operations.
At about 1:00pm, we were allowed into the post-op area to be with Charlotte, who had just come out of sedation. Mommy stated with her, while Daddy switched out with the grandmas so they could see her too.
Shortly after this, we moved with Charlotte up to the Pediatric Intensive Care Unit (PICU). The reason for this move is because she has an epidural for management of pain medicine. Because of this she has to be in the PICU, as they cannot support this on the normal floor. She should be in the PICU for 24-hours, maybe 48 depending on how she goes over night.
Gramma Dar and Granny Meryl both had visits with Char in the PICU this afternoon. Gramma left at about 4:30pm to go home. Thank you so much for being here with us today, you are a champion!
This evening Granny (who is staying with us at the hospital) is breaking us for a while so we can relax in the hotel room. Daddy is going to man the watch this evening so Mommy can get a night of sleep in a bed and not an arm chair that turns into a "bed"!
Charlotte is a calm and very well balanced 19-month old. If it becomes apparent that further treatment is required, she was obviously made this way for a reason, and having the demeanor that she is blessed with will greatly help. We are entering a period that could require further testing over the next few years to ensure that she is cancer free. This will probably become a difficult period for all three of us, and your continued prayers, thoughts, kind words, loving notes, and whatever other ways everybody has displayed their affections to us will be greatly appreciated for time to come.
I know this was long, but I know that you all wanted to know what had been going on. Thank you all for your prayers and thoughts today. God Bless you all!
With Love to all,
Toby and JoAnn (and butterfly kisses from Charlotte!)
xxx
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