Diagnosis

I emailed this out to many friends and family and decided to just paste it here as it is the easiest way to describe what's going on. It was written last night.

For those of you who do not know what is going on with our littlest family member, or the full story, here it is.

Two and a half weeks ago 10-month-old Aiden and I made a visit to the pediatrician regarding a lump in the lower section of his inner right leg. I had noticed it a few weeks before but shrugged it off as another bump on a boy. When I felt it again a couple weeks ago, still not accompanied by a bruise, I decided to take him in, "just in case." Less than an hour later we were in SimonMed getting an x-ray and ultrasound on his little leg. His doctor called me a few hours later, telling me there was probably no problem, but we should go see a specialist. Three days later, we met with Dr. Pham, a pediatric surgeon. After looking at options (keep an eye on it, an MRI he would be put under for), he told me he recommended we remove it, "just in case." Probably nothing, a large calcium deposit, etc. He wasn't worried, expected the best.

Last Wednesday we checked into Cardon Children's Hospital for what was supposed to be a 45-60 minute procedure. Almost 2 hours later Dr. Pham came out and told us the mass had attached the the lining of Aiden's bone, he wasn't sure what it was and was sending it out to test it. He had to remove part of the bone it was attached to, but was able to remove the the mass in one piece. Again, he said he was expecting it to be a benign lesion. Friday I got a call from him personally to tell me it was a rare tumor (called a plexiform fibrohistiocytic tumor) and we would need to see a pediatric oncologist.

Monday (yesterday) we met with Dr. Pham and Dr. Li (the pediatric oncologist) who explained to us that it was an intermediate malignancy with a high recurrence rate in the same region. This form of cancer has not been seen in a child as young as Aiden and to their knowledge had never attached to the bone. (Did I mention Dr. Li said there are only 69 reported cases, ever, of this tumor?) They recommended he have another surgery to remove the fat, skin and tissue, and a little muscle, that had touched the cancer, which we did today. They actually essentially hollowed out his leg from the skin to the bone. The hopes of doing this surgery is that he will not have to proceed on to further treatments. We will also be going in for a bone scan (there is a possibility of it growing in the bone because the tumor had attached to it), and an MRI of the chest and arms (because that is predominantly where this type of tumor is generally located) this week, both of which he will be put under for and must be done on different days. And, not to mention the possibility of infection and further surgery to put a port in if the cavity in his leg fills with fluid.

So, where do we go from here? Well, from what they have told us, if what they took out today shows negative cancer cells around the margins, and the MRI and bone scans come back good, we will meet once a month with the oncologist for the next year as well as do an MRI every three months. After that, if everything still looks good, we will have an MRI every 6 months, then every year. If it comes back showing there are cancer cells in the tissue taken out, we are on to radiation of his leg which can cause the bone growth to be stunted. Also, if the results of the MRI and bone scan show cancer anywhere else, we will probably be on to chemo and possible radiation. And, if should return at any time, we will be doing radiation.

Aiden is doing well tonight. He is sleeping peacefully and seems to be comfortable with the help of the pain medication prescribed to him. He was smiling at us and happy to be home earlier. Luckily, both surgeries were out-patient procedures. The doctors have all been extremely helpful and quick in getting tests done. A board of four from the oncologists office and four from the surgeons office will be meeting tomorrow specifically for Aiden, regarding his treatment. To my knowledge they have never personally worked with this type of tumor, since it is so incredibly rare, but I feel confident in their abilities and feel they are being guided by Heavenly Father regarding Aiden's care. As they said, it can go downhill so fast with pediatrics, so they are right on top of it. I am completely happy with all they are doing for our sweet baby boy.

I will be honest: I have never in my life been more scared than I am right now. It is the worst thing I have ever gone through. As I have told some of you, this is my worst nightmare coming true. I keep hoping to wake up from this horrible situation and to be so glad it is not really happening. In the event this is not a dream, however, I am asking for your help (and, for some reason, this is really hard for me... Don't know why...). Please keep Aiden in your prayers. Pray that the doctors will be able to adequately and accurately care for him. I fully believe our Heavenly Father will hear those prayers and watch over my little one. I have realized this may not go exactly the way I like it; it already isn't going that way. It may lead to radiation or chemo (I really hope not). I don't know what ahead on the road for us, but I do know God will hear the prayers of our family and friends in behalf of our baby.

I'm sorry this is so long, but I also have to say, thank you to those who have been praying for Aiden. To those of you who have sat next to me and cried with me, who have offered help in any way, have texted, listened to me blubber on the phone, I TRULY appreciate your support. I take so much strength from you and it makes my steps in the dark place I'm in a little easier. On behalf of our family, especially Aiden, I say thank you so much. I cannot adequately express my complete gratitude. Please keep remembering him in your prayers.

Thank you so much for reading through this. I honestly feel the outcome of this will be positive, but getting there could be a struggle for our little man. I thank you for your support in this difficult situation.

Neely (and, of course, Austyn, Tyler and Aiden)