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
On Friday evening, Uncle Ricky and Aunt Loey came back to visit. Uncle Ricky is a screen printer (http://www.adkscreenprint.com/) and his compassion for little Charlotte was displayed in his making us all matching t-shirts. We will be offering these for sale in the near future. Being given this opportunity to have these for sale and then using the money to help with medical expenses is a fantastic outpouring of love from both Rick and Lois. Thank you both so much, we love you.
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/cancertopics/druginfo/cisplatin) she was up and about and walking the halls of the ward. She is attached to an IV, which connects to her port, so she has good freedom of movement, but she sometimes forgets and takes off like a rocket and then reaches the end of the IV tube and suddenly has to stop. Mommy or Daddy have to keep up pretty quick!
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!)