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almost 2 year old daughter has melanoma and needs your prayers...

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LTxda

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Jan 1, 2005
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Sorry to post bad news but it's my daughter and I want to get as many prayers as possible.

She's not even two and is undergoing her second surgery in an attempt to fight off Melanoma.

I typically don't bother people with things like this but it's for my daughter. If it was for me, I wouldn't even bother.

As you can guess, I'm a mess. She's Stage IIIc currently and it could go either way.

Thanks in advance for your prayers.

Please spread the word. :(

EDIT: If you could reply here so I know how many people are pulling for her....even if you don't pray...that will help.

How this started: She was born with a type of birth mark on her back called a nevus. At her age the doctors told us it's more of a cosmetic decision to have it removed. I listened. They said that in older kids there is a potential for cancer but not in her age group....very rare. They advised that we wait until she was 2 years old to remove it if we decided to go that route, so we waited. Little did I know that it would turn into this. My advice is to remove any threat to your child even if there is a .000000000000000000000000000000000000001% risk...it's never worth it. Lesson #1, I wish I would have been more vain and said that "thing" has to go immediately. Well, all was going fine then one day we noticed that an area of the nevus started to change. We made an appointment at the specialists and it took a while to get her in. No one thought it was a threat but they wanted to do tests. We took her in and they took a piece and sent it to the lab. MISTAKE/LESSON #2...if there is any threat to your child...tell the doctors NOT to take a little piece and examine it...tell them to TAKE THE ENTIRE THING then do what they need to do, not leave pieces behind that could yield further issues. If they would have taken the entire thing out, the risk would have been greatly reduced. The longer you leave cancer cells in your body the worse it can become. After the tests came back as positive for cancer they immediately scheduled the operation to have it and a significant area around it removed for further testing. That happened, the rest of it went off to a lab and the perimeter came back with no cancerous cells. They also took out a few lymph nodes but those came back positive for cancer cells. As soon as those results came back she went back in for her second surgery.

Update: 09/14/2008. People have been asking me so I'm posting an update. She's undergone two surgeries. The second was to remove additional areas of potential threat and also all the lymph nodes under each arm. The cancer could have spread to these lymph nodes and they had to remove them in case it was contained there. I'm praying it was. As for how she's doing now, she has 4 drain tubes to drain fluids from her body while she recovers. One under each arm and two on her back. As the doctors explained, after surgery there are voids where the body tries to fill with fluid and they need to keep that fluid from settling. She had a couple of bad days with pain from these tubes that are going into her body but the past couple of days she's been doing wonderful. We have to stay on top of her to ensure she doesn't hurt herself. Right now the lymph nodes that were removed have been sent off for further testing and we should have results back sometime next week. She also starts cancer treatments next week in an attempt to cut off or delay any further manifestations in her little body.

Update: 09/17/08. We just got back from the doctor. Got the 4 drain tubes and "bulbs" removed so now she can move more freely and with less supervision. I can also go back to a normal sleep routine since I had to sleep with one eye open to ensure she didn't tangle herself with the plastic tubes when she turned in bed during the night. Big relief here. She also had her CT scan of the brain. We had the surgeon pull the file up as a favor and he said it looked okay BUT that he was not a neurologist nor was the scan officially reviewed yet so we continue to pray and soon we start the aggressive therapy...Interferon Alpha2b. Many side effects but nothing worse than cancer spreading so it's worth the ride for all involved. We now wait for the official results to get back to us and the results of all the lymph nodes that were removed in the second operation. Thank you all and keep praying for her no matter the faith you believe in and if you don't believe in any God please think positive thoughts for my little girl. I'm not too proud to beg when it comes to my child.

Update: 09/17/08 #2. Just got an e-mail from a doctor at the hospital. The results from the lymph node tests came back all negative and the nodes removed during the second operation had no cancer. This is great news for me and my family because statistically it puts the odds back in her favor. We're still moving forward with periodic scans of all her major organs and the cancer treatment, which we're starting next week. Keep praying for her people and thank you....thank you.....thank you!!!

Update: 09/23/08. All is positive but will be getting a little bad for her for the next year. She starts Interferon therapy on Monday. It's going to be an interesting year. Again, thank you all for your continued support. You have no idea how much it helps.

Update: 10/11/08. Thank you all for your continued support. She's not finished her first 2 of 52 week treatment. The first 4 weeks are the worst but she's actually doing extremely well. The only side effects she's demonstrated were high fever the first two days of treatment which we quickly got under control with a Motrin and Tylenol routine and her being more tired because we have to wake up extra early to be at the hospital every single day for her treatment. The first 4 weeks we have to be at the hospital anywhere from 3-7 hours for her treatments. She's doing extremely well and i'm still praying that this treatment is not necessary and that the cancer never made it past her lymph nodes into her body. This treatment doesn't really cure anything...it just prolonges the time before relapse. If the lymph nodes contained it then we're good. After the initial 4 weeks, we start giving her injections three times weekly at the house. This is going to be easier on her as she'll be able to start sleeping in again and taking her naps on time. Her eating habits are a little off as well because the treatments give you a bad taste in your mouth. Luckily for us, we're fortunate enough to be able to cook up a choice of dishes for her keeping her eating. She's gotten picky about what she eats but we're giving her enough choices to keep her eating. We're trying to avoid avoid weight loss which is one side effect but it's typically a result of patience not wanting to eat because food just doesn't taste as good. Kids at this age don't know to eat because they have to until they are starving when stuff like this happens...unless daddy feeds them some of the best Fajita's in town or a savory steak. We have two more weeks of the "hard" treatment and then it eases up on her body a bit because the dosage is reduced for the remaining 11 months.

Update: 10/25/08. Thank you all yet again for your continued support. We've finished the month long daily treatments of heavy interferon dosage. She actually had two small side effects out of all the scary stuff and although we still have 11 more months of treatments that could yield some nasty side effects, she pulled through the heavy part like a champ. Of the 30 days she had 2 with fever which we brought under immediate control using Tylenol and Motrin and then she would get a little flush in the face a few other days but a hydration solution through the portacath in her chest fixed that right away. We had some long days at the hospital and i'm thankful that my customers are understanding. It's been tough but worth the fight and the entire family remains strong. Little Alessandra seems to be the strongest of the bunch, LOL. The grandmothers missed a lot of work because we didn't want to take Alessandra's little brother to the hospital for the long days so they stayed at the house until we returned from her treatments then they shot off to work. Friday was the last day of heavy treatments and now we start treating her at home by giving her three shots a week. We still have to monitor her for side effects, continue to take her in for regular scans of her organs to see if cancer pops up anywhere, and watch her skin to see if there are ANY changes. All in all a small price to pay if the cancer never manifests itself again. I think we've made a decision to remove every mole on her body once she goes back in for the, I hope to God, final surgery. The melanoma can manifest itself in moles much easier than in other areas of the skin and considering what she's already been through, I'm not leaving ANYTHING to chance. Some may think I'm crazy and this may be going too far but you wouldn't understand until you went through this. The odds of her having to go through this were astronomical but it happened. I'm not leaving it to chance and as another member in the forum reminded me, drastic times call for drastic measures. Again, thank you all and I will continue to keep the thread updated for those interested in our fight.
 
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LTxda

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Jan 1, 2005
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Thank you all for your continued support. She's tough and fighting it with a strength that is incredible for someone her age. BTW, she's now officially 2 years old.


Update: 11/25/08. Yesterday/Monday we took her to the hospital for a check up. Had ultra sounds done on the areas where they removed the lymph nodes and a chest x-ray. Thank God nothing was present. All tests came out clean and we're moving forward to enjoy our Thanksgiving Holidays. One thing we've taught Alessandra to do was pray. She enjoys it and now is old enough to join in and even ask us to pray with her. She looks like a little angel when praying, putting her hands together and bowing her little head while we all pray together. Thank you all for your continued prayers. Keep my little daughter in your prayers, positive thoughts, etc. it's working. She's a very strong little girl and is making it through all the shots and scans and pokes of her little body. No child should ever have to go through this but if they do they should with a loving family and as many prayers as possible. Thank you all for doing your part in helping us with this fight. Again, no matter your religion thank you in advance for your prayers. I have word that people all over the planet are praying for my little girl. Hundreds of churches of all religions and literally thousands (maybe tens of thousands) of people in many different countries are praying. Thanks again!

Update: 12/17/08. Last Saturday we had to take the little one into the emergency room. She had something swelling bad where the scar is from her last surgery. They did an ultra sound and found fluid and also some mass. Thursday/tomorrow we're schedule for her third operation. They want to go in and remove this immediately. They will run tests and determine if it's a reoccurance of her cancer or just the way that area healed. I'm praying that it's not cancer and that it just healed weird and caused the swelling. Thanks again everyone for your continued support.

Update: 12/28/08. The operation was good and she was out the same day. The results came back and it was more cancer. Not good. Over the holiday weekend we noticed another lump swelling on her back. It's most likely more cancer. On Monday we go in for entire body scans CT and PET. I'm praying and hoping to God that this is only isolated in those areas and once removed it's over with and that it's not in a major organ. Just thinking about it is the most painful thing I've ever experienced. Thank you all for your continued support and prayers. She needs that more than anything right now. We'll most likely be scheduling another operation to go in and remove the new lump from her back this week. Will make it her 5th operation within a 12 month period. All I can say is I wish it was me.

Update: 01/02/09. The CT came back clean but the PET found another tumor in addition to the one we visually detected. Doctors ordered an Ultrasound which initially confused me. I figured why an Ultrasound when we already did a CT and PET? Well, i'm glad we did. We noticed that the lump that was visually detected was actually two very close together. The Ultrasound gave everyone a more clear picture. I'm learning a lot more about this disease and will one day try to setup a website to help others. There is a lot of knowledge that i've gained that I haven't read about on any other website and all the sites basically tell you the same stuff over and over. It's good info but it's not good for when you're already in the fight. You need a new set of rules and data when battling this monster and maybe one day i can put it up to help others...one day after my daughter is done fighting and maybe she can even help me. Meanwhile, I sit at the hospital for the operation. They were initially going to go in to do "clean up" from the previous operation and remove the three additional tumors found. I spoke to the surgeon and told him I wanted to do more. I wanted to remove more of the "left over" lymph "channels" to avoid a reoccurance. I let him know that the disease is betting more aggressive and I wanted to do the same. He immediately called in the plastic surgeon that he had on standby and jumped right on the idea after consulting with another oncologist. She's now in there and it might be another 4-5 hours before she's done. No matter how many times I've been through this with her, I can never avoid crying when they take her from my arms and into the operating room. I just sit and wait now and pray all is going well and that this might be the last operation she'll ever have to endure. One thing I know for sure, this family will be unstoppable when we win this fight because the strength gained from this battle is not going to be taken for granted.

Now...i've gotten a lot of PM's offering help from users that have gone through cancer, from doctors that use the forum, from users who knew someone with cancer and even those just extending their best wishes but i was never really too sure what kind of help I could get for my daughter but now I know one thing that can help us greatly. Please continue your prayers...Muslim, Christian, Islam, whatever....please pray for Alessandra. Second, I know that best way to fight this is early detection so I ask the doctors and people that have been through this and those that know anything....help me by letting me know of any cutting edge medical scanning technology, etc. The CT and PET and Ultrasound are all great tools. There are also the 3D and even 4D Ultrasounds. I want to hear from you guys because I'm about to set appointments to get her entire body scanned with an Ultrasound. I know this will only catch stuff close to the surface and doesn't work well detecting tumors deep in her body, if i am understanding all of this correctly and please note that I haven't had much time to research it fully yet. For anyone out there that knows anything about this stuff, I have the following questions:

- Is there anything more advanced and higher resolution than an Ultrasound? From talking to the doctors it seems the Ultrasound can detect smaller "objects" than a CT or PET would be able to and it seems like the Ultrasound had a more "clear" view of the items. Please correct me if I'm wrong.
- Are there any other technologies that can be used to scan for cancer instances that a PET/CT/Ultrasound might miss?
- Has anyone heard of any other ways of detecting melanoma cancer once it's in the lymph nodes and even in the body once it gets past the lymph nodes? Other than scanning with the PET/CT/Ultrasound and waiting for a tumor to be large enough to show up?
- Any chemical detection methods available? I read that some cancer produces certain protein markers that can be detected very early via blood tests. Does anyone know of something similar for melanoma?
- The Interferon treatments she's undergoing might or might not be working. Has anyone heard of any available treatment for someone her age when Interferon doesn't work for melanoma cancer? I heard the Mayo clinic has alternate treatments but when I called the doctor wouldn't talk to me and insisted I go see them. All I wanted to know were questions to plan my trip accordingly like: Can it be administered with Interferon? If not, how long after the Interferon treatment finishes can the alternate treatment begin? What are some side effects, if any, of the alternate treatment? How long would the alternate treatment last for? All of these questions were so I knew what to expect, how to plan for it and how long we would be undergoing treatment. What really pissed me off is that the doctor wouldn't even answer questions through her assistant. Pretty damn petty and business like when a little girl's life might be at risk here. I know there might be protocol but hell, sometimes protocol needs to be circumvented when it's petty and someone's life is at risk...give me a fucking break.

So if anyone has any knowledge they would like to share please do so in reply within the thread. Your response might help someone else that hasn't had time to post something like this or prefers to be more private than I'm being.

Thank you all again for your support and for any help you may give here for my daughter and for anyone else going through this.

Update: 04.20.09. The fight against the cancer continues. My daughter is hanging in there. She currently has three-four tumors. One was removed this week for a special trial that we've enrolled her in. She's undergone Interferon and Interlukin-2 treatments. I feel that the Interlukin-2 had an effect on the cancer and we're going to revisit it but right now it's time for more aggressive treatments. A friend of the family has put up a website that's not 100% done. I see AstainHellBring posted it and I thank him for that. I'm going to post more details there and what we've gone through. I hope this new site not only helps my family but also other families going through the same thing. There is so much miscommunication and things they dont' tell you that I want to communicate, it's crazy. Things that you need to prepare for but either they are affraid to tell you or they just don't know. Thank you all for your continued support for my daughter. I'll post more info later.

Can't post updates here...message too long so posting to the end of the thread again.
 
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Sledutah

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Oh man, that's terrible to have your child sick like that. We are praying for her and your family.

Best of luck that they are able to take care of this problem
 

worstenbrood

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i got a 3 year old daughter myself i can imagine what your going thru, i'm not a religious guy but i'll do whatever i can to support her and your family, we're all thinking about her, i hope she get's well soon !
 
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