We are getting ready for the St. Jude Memphis Marathon on Saturday, December 6th. This is St. Jude’s biggest fundraiser and our entire family will participate. Please go to Alyssa’s Facebook page for more information and updates.
Alyssa just got the all clear for 4 more months. As the months go by, you start to relax more and more. But it’s always tense when you get to the 4 month checkup point for scans. We love hearing NED (No Evidence of Disease) and we got that again this time.
The only other big news is that Alyssa has finally (after 2 years) outgrown her back brace. So she will get a new one in pink camo! Last time we didn’t know to ask for a pattern, so she’s had plain white for 2 years. So she is very excited to be able to pick a design this time.
Okay, summer is really flying by too fast. Alyssa went to a cancer camp in Nashville called Camp Horizon and had a blast. It was the first time I felt comfortable letting Alyssa go away from us for a full week with strangers. Even writing this sounds wrong! But the camp had a fully trained medical staff and so we let her go… for a week… in another city… with no contact at all… with complete strangers! Why did we let her go again?! Actually not complete strangers since some of the St. Jude staff was there. The point is, she had an absolute blast. If you read my “Bravo Broadway Bootcamp” post you know that we had a great experience. Camp Horizon was another winner winner (fish dinner)! Alyssa did crafts, scrap booking, canoeing, fishing, cooking and more. The counselors told me she was a hoot and kept them all in stitches. I guess she is giving her brother, Luca the Joker, a run for his money. Maybe put the Broadway skills to use with a career in stand up comedy? She had a blast and wants to go back here next year too!
Luca got to experience a little bit of camp life with a one day sibling camp. Alyssa went to camp Sunday – Friday. Luca got to go Saturday to the camp. He got a taste of some of the fun stuff Alyssa did and he had a great time. It’s great the siblings get special treatment too. It was a fun experience for Luca and he met some new friends there. We picked Luca up in Nashville and headed straight to our next adventure.
We stayed at the Great Wolf Lodge in Cincinnati/Mason, Ohio.
Our new friend Bryan helped check us in and get us ready to play. We enjoyed the indoor water park to the fullest. Getting there at open each day and closing it at night. We did take food breaks in between. Since Alyssa was diagnosed with Melanoma, outdoor trips have become more challenging. We still do them of course, but with lots of planning. The indoor water park takes all the drama away. We can enjoy with no worries of sun exposure.
Not to mention the kids love MagiQuest and spent many hours on the new adventure called ShadowQuest. They were awarded a new “rune” with each quest that involved running around like crazy in the hotel. Where else can you get the kids engaged in something electronic while being this active? They defeated Malaki six times each. I guess once just wasn’t enough!
Lots more summer fun to go, but it does need to slow down. The next two weeks are pretty full with appointments at St. Jude. We have our appointment with her oncologist and four months scans. That is always nerve wracking! We also meet Neurologist, Cardiologist and Endocrinologist. I hope to hear more about the heart surgeries needed and will update as soon as I hear anything. Also very curious to hear what the Endocrinologist has to say since those IGF-1 hormones are back on the market. Also headed to Orthodontist to find out if the bracket is giving us proper space in her mouth for all the up coming dental fun! Alyssa will also take part in a four hour speech study to help with data for speech patterns in children with Koolen de Vries Syndrome. I don’t know that it will tell us anything we don’t know, but it’s nice to take part in a study that could help other kids in the future. I will update everything soon!
Alyssa loves acting and being on stage. This past spring she was “a resident” in her grade school performance of “Annie Jr.” Words cannot even come close to describing how much fun she had being a part of this. So when my mom bought her a Broadway Bootcamp session at the Orpheum Theater Alyssa was thrilled. I on the other hand had my reservations. It was an all day camp from 9-4. In a totally new environment where nobody knows her or anything about her. They won’t know all her medical issues and quirky personality. Will they be able to take care of her and be understanding and patient with her? These other children whom have probably studied theater before and are talented actors, dancers and singers… will they be able to accept my spunky little red-head?
The first day of camp I checked Alyssa in and debated what I should tell them about her. If I tell them she is “special needs” they may already have a predetermined idea of what that means and automatically limit what she gets to do. But then if I don’t tell them, they may not be understanding of her and her personality. As we walked in the excitement in the air took over. Kids getting their bags and shirts and gathering in a circle for introductions. Chatting and laughing with each other as they waited for camp to start. You could tell some of the kids already knew each other.
The camp instructions had specifically said no leaving during the camp. So already we had to break the rules. Alyssa had an orthodontist appointment the next day and would have to leave early. As I explained to one of the camp counselors that her bracket had come out and we had to get it fixed I waited for the impending annoyance of my breaking the rules, but instead he looked up and smiled, “no problem.” Whew, I felt a rush of relief. I don’t know why in my mind this was such a big deal, but I didn’t want to put any added pressure on Alyssa for missing practice time. Especially when I know she’s going to need all her practice time!
Alyssa was already pulling on me to change into her camp shirt. She quickly changed and headed toward the group. I had to suppress my mom urge to walk toward her when she glanced back with that panicky look in her eyes. Just then one of the boys helping with the camp took Alyssa by the hand and led her to a seat. I took a deep breath and walked outside.
The week flew by and by day three Alyssa said she wanted to do the camp again next year. Friday was performance day and I was so excited for my girl. I was also nervous for her. I just hoped she did what she was supposed to do and not do anything too crazy. The lights went down and the show began. The opening number was a song called “Masquerade” where the kids used their masks while singing. Alyssa was in the back center. I could see her looking at the other kids to make sure she did it correctly. At the end of the number Alyssa came towards the front of the stage. The other kids started running off stage and for a moment I though Alyssa forgot to run too. But she went down on all fours and said, “I’m a cat, meow!” The audience laughed and the show started. In the scene other kids had lines and moved around. Alyssa stayed in her cat role and meowed when spoken to and was adorable.
Her next number was a dance number and you could see some of the kids had some real talent. Alyssa watched them and followed along occasionally covering her eyes from the light. At the very end of the number she had a great moment where she let it all go and actually sang loud and proud. It was nice to see. The whole week I’d been wondering how the other kids were with her. Was her quirky personality annoying them? Were they afraid she was going to mess up their hard work? Were they tired of her missing her mark and not knowing her part?
During the closing number my fears were relieved. They whole group was in lines. The front line would perform, run off stage, the other lines moved forward and the front line reappeared in the back. It was fun to see each line get spotlight time on the front line. Alyssa did a good job on her turn up front. Then it was time to run off. Two girls tapped her on each side letting her know it’s time to run off. It was so very subtle and I’m sure not many noticed. But I did. And it that moment I could see the love and care the other kids were showing her.
After the show all the kids were coming out and finding family and friends. In true Alyssa fashion, she was the last one out. I’m sure it was because she feels the need to check on everyone else before she gets her stuff together. Other parents didn’t even look twice to see what their kids had. I of course had to go through the checklist with Alyssa. Did you get all your stuff? Lunchbox? Script? Bag?
We headed to the lobby where everyone was saying their goodbyes. “Good bye Alyssa,” many of the kids said looking at her and smiling. Hugs and goodbyes were exchanged. She went up to the staff members gathered towards the front and started her hugs and goodbyes with them. A couple of the ladies towards the front stopped me and said to PLEASE bring Alyssa back to next years’ camp. They told me what a joy she was to work with and how much all the other kids loved her. So what was it that I was so worried about in the start? Sometimes we get caught up in the what ifs. What if the kids are mean? What if the counselors don’t understand my child? What if she does something weird in front of the other kids? I have to stop my self and remember the other what ifs. What if she has a blast? What if the other kids think she’s adorable? What if the counselors love her and teach her something new? This is why we have to take chances in life and try new things. People won’t always “get” and care for my special girl. When they do it’s amazing. In this case it paid off huge for my girl. And YES Alyssa will be back next year!
Team Alyssa Rocks has teamed up with Sun Angels, maker of UPF 50+ sun protection gear for kids. Sun Angels will donate 10% of all May sales to support Melanoma education and research. Alyssa’s goal is to make everyone, especially children more sun safe. Sun Angels UPF 50+ arm sleeves are available for purchase at www.sun-angels.com. Also check out Team Alyssa Rocks’ Facebook page for daily updates, tips and melanoma facts.
We had our follow up with the cardiologist. Alyssa has two heart conditions that are being followed. I guess we have gotten a little spoiled with these follow up visits lately. We get our tests, blood work, etc. done. Then we wait for whichever specialist we are seeing that particular day. He or she comes in and says that everything is looking good, see you in 3 mos, 6 mos, 1 year… whatever the case may be for that issue. Sometimes I even cram my brain thinking of a really groundbreaking question where the doctor will be forced to give me some secret information that he didn’t mention before. I’m a bit crazy that way, I know.
So I was unprepared for this cardiology visit. One of Alyssa’s issue is still remaining on the “let’s watch” list. So continue with check ups until something changes there. But her bicuspid aortic valve has gotten worse. My heart dropped a bit when he told me this. I know he told us that it would most likely need surgery to correct it… eventually. I wasn’t prepared for him to tell me surgery would need to happen within the next two years. Heart surgery within two years? She’s only 11. Believe me, I am quite aware than many other children even babies have had heart surgery and my child is certainly not unique in that aspect. But this is my blog and my vent and I was not prepared for this.
He said we still have time to think about it and discuss our options and the best thing for her. Her valve would need to be replaced as repairing the valve has not yet proven in long term success in cases like hers. There are three options for valves and I went into a bit of a brain spin as he explained, but got bits of information on each. We will of course scour over each option before making any decision. But the basics are, 1) proven not good long term so would have to be replaced again at some point, 2) long term good, but she would have to go on blood thinners for life and that brings up many other issues, 3) good option long term, no blood thinners, but still in trial phase with adults. There is also a medicine that may or may not slow down the deterioration that could buy us some more time, but have to look at side effects vs possibility that it will work.
For now we are going to track her blood pressure for three months and then meet again to decide if we want to try the meds or not. So more on this topic in three months!!
I posted this on Facebook today, but for those of you that don’t have Facebook…
My heart is heavy and sad today. One of our sweet melanoma warriors has left us. Battle with Bethany showed her journey. Bethany was too young to have faced what too many are still calling an adults cancer. It happens in kids. And not 1 or 2 cases per year as many mis-informed journalists have told us. Pediatricians and dermatologists are still telling parents, it doesn’t happen in kids especially under 10. It DOES! And I’m sad and tired of this. It’s time to step up and spread the word. Bethany fought this disease with all she had and is now joyfully with her Father in Heaven and for that I am thankful. But the loss her parents have to face is just unimaginable, unbearable and unfair. Please watch your babies! Protect their skin and have it checked by a dermatologist that has seen melanoma. A good one can spot it, I promise you. I thank God every day that we were lucky enough to have the expertise right here in our backyard of St. Jude Children’s Research Hospital. The doctors here understand pediatric melanoma and continue to search for answers to this puzzle. Sure, in children it’s probably not from over sun exposure. But sunburns as a child increase your chance of getting melanoma as a young adult. So sunblock your kids, no excuses. In these pediatric cases, there is most likely some underlying genetic cause like with Alyssa’s KdVS. But don’t think for one second all of these genetic conditions our children can have come with a big sign that tells you they have it. I know it’s still rare for kids to get this. And I’m not saying we should all go crazy and freak out. However, keep an eye on your children’s skin. Do the research at great sites like Melanoma Research Alliance and know what to look for. Taking a moment to do that could be lifesaving. Today, Team Alyssa Rocks prays for Bethany and her family. We are inspired by your courage and promise to not give up. We will spread the word until everyone is educated about the risks and the cure is found! We love you Angel Bethany!!
Today was our 4 month checkup at St. Jude. We started with blood work, which Alyssa still hates. But the nurse was very good and quick so we were in and out in no time. Scans and X-Ray’s also pretty quick. Which meant Alyssa and Luca had time to make decorations for the Mardi Gras parade. (Luca was out of school due to ice, so he got to hang out with us today). The parade was really well done. They had tons of beads, foam balls and cups to hand out to everyone. Alyssa was throwing beads out in huge bunches. She had such a blast.
We met with her oncologist and went over all her specialists and things going on. He told us that they saw something on a scan that was unclear. He was 99.9% sure it was okay. That .1% still makes you worry. I don’t know why, the odds are totally in your favor. So we had to squeeze in another scan after endocrinologist.
I don’t really know at this point why we even went to the endocrinology appointment. Her IGF-1 labs were not back yet. And even if they were low again, there is nothing to do. Increlex is off the market. Growth hormones probably won’t work, plus insurance won’t even pay because she is IGF-1 deficient, not growth hormone deficient. We did find out there is no sign of puberty hormones. No shocker there! She did grow almost an inch in a year. Wow! Setting some big records there. I guess tiny growth is better than no growth. It’s just so frustrating. They know what’s wrong and how to fix it, but they can’t. No idea how much or if she will grow. How tall will she be? Who knows!
After lunch we headed back to the oncologist who told us the scan was fine. Whew! That is a relief! He did mention her scoliosis looked worse on the scan and it made him nervous, so we moved her orthopedic appointment from June to March just to have it checked out. I don’t expect anything strange since we were just there in December. I do love getting the report in my hands that says NED (No Evidence of Disease!). That makes us all happy!
Alyssa had a great Birthday party. Since her actual Birthday is December 27, we always have her party in January. This time she wanted to have a party for Make-A-Wish Mid-South. And of course we had to do the Simpsons theme. Although, we had trouble finding Simpsons stuff, so we had to use yellow party plates. Alyssa dressed up like her favorite Simpsons, Lisa Simpson. Everyone played Bingo and won all kinds of cool prizes. Some of the parents laughed because their kids left the party with so many prizes. We set up the living room with a “Simpsons Couch” and had our photo shoot with all the characters.
Alyssa had her dermatology appointment this week. The past few visits she gets the head to toe look over, they take some photos and off we go. This time however, one of her moles on her back had started to turn a little red at the edges. I hadn’t noticed it until in the office. When I looked at the nurse practitioner’s face I realized it didn’t look right. We decided it best to go ahead and do a biopsy. Since melanoma is known to come back, better to be safe than sorry. I also realized I had not warned Alyssa this could happen. She knows the drill, but started to freak out when we decided to take it off. There were lots of screams during the shots to numb the area. I think everyone in the waiting room must have heard and thought what kind of place it this?! Once that was done it was easy. Alyssa did not feel them take the biopsy sample.
Today we recieved this in the mail, “We are pleased to inform you that the results of your biopsy(s) were within normal limits.” So much nicer to receive this note in the mail over the dreaded phone call!! I think I’ll have this one framed!
Two days before Christmas Alyssa had a neurology appointment at St. Jude. This was a great opportunity for her to play Santa and bring treats for all her doctors, nurses, surgeon and everyone that helps out with all her craziness. Since it was so close to the holidays, a few folks were missing, so hopefully we will catch up with them next time. But Alyssa had fun pulling the red wagon she referred to as her sleigh and delivering yummy treats to everyone.
Her appointment went fine. I did bring up some questions about neurological issues that I have heard from other Koolen de Vries Syndrome moms. But he said not to worry. One thing I had heard about was tethered spinal cord, but he said she would have displayed symptoms by now if it was severe enough. Plus he mentioned it also would have showed up on a MRI which we did on her back last year. Since no one mentioned it, it must be okay. Of course, I will ask her Orthopedic Surgeon next visit just to be sure.
The only thing that could cause it to change would be during puberty. It’s so strange, many of her medical issues seem like they can be aggravated by puberty. Puberty that she does not seem to be at almost 11 even close to reaching. But since we want her to grow and mature, we are still hoping that puberty is coming. We were even willing to do something to make it happen. But maybe we shouldn’t be rooting so hard for puberty?