Ahhhh.... I think back sometimes to when life was simple (well, somewhat...) and try to remember what I must have done with myself! Do you ever think, Man, I had it so much easier then... What was I whining about???
Last weekend we went camping in the Graham Mountains with Austyn's family. Saturday night Aiden had a hard time breathing and a nasty cough and we decided we had better take him in to the hospital. So, down the hill we went (1 1/2 hours down, might I add) to Safford to the Mount Graham Regional Medical Center Emergency Room. After chest x-rays and breathing treatments, it was determined Aiden has pneumonia. Yuck.
I took him to his primary care Dr. yesterday, and they gave him another breathing treatment because the cough is really bad still. And, if it doesn't get better by Friday, we have to go back in for steroid treatments. The problem with that is, as they explained to me, the steroids will lower his immune system which is not what they want when it comes to people with cancer whose bodies need all the immunity they can get to fight off bad cancer cells.
So, I know this doesn't have anything really to do with Aiden's cancer, but it is somewhat affected by it. I didn't realize that literally everything would be affected by this. It is amazing how that happens.... So, if you see me pulling out my hair, you know why. :-)
Wednesday, September 7, 2011
Cancer Awareness
September is Childhood Cancer Awareness Month (along with prostate, ovarian, leukemia and others). I have ordered my childhood cancer awareness "stuff" (bracelet, magnet, pins, etc.) to remember this month. I also thought I would post some statistics about childhood cancer.
Did you know:
Every day in 2011, over 30 children will be diagnosed with cancer in the U.S.?
In total, childhood cancer represents less than 1% of all new cancer diagnoses?
110 children die every month from cancer, making just over 3 children a day?
Childhood cancer is the 2nd leading cause of death in children, after accidents?
For this month (and every month, but especially this month): I will continue to be grateful for my baby boy; I will continue to thank my Heavenly Father for Aiden's health and remission and no radiation for the time being; I will say a prayer for the families of the children who lose their lives every day to cancer, and also thank Him Aiden is not one of them; I will hold Aiden a little tighter and try not to be impatient when he whines; I will donate blankets to programs who supply them to children in the hospital being treated for cancer; I will not take for granted the little moments that make life so sweet, as well as the moments that are difficult--because it could be worse!!!
Is there something you can do for Childhood Cancer Awareness Month?
Did you know:
Every day in 2011, over 30 children will be diagnosed with cancer in the U.S.?
In total, childhood cancer represents less than 1% of all new cancer diagnoses?
110 children die every month from cancer, making just over 3 children a day?
Childhood cancer is the 2nd leading cause of death in children, after accidents?
For this month (and every month, but especially this month): I will continue to be grateful for my baby boy; I will continue to thank my Heavenly Father for Aiden's health and remission and no radiation for the time being; I will say a prayer for the families of the children who lose their lives every day to cancer, and also thank Him Aiden is not one of them; I will hold Aiden a little tighter and try not to be impatient when he whines; I will donate blankets to programs who supply them to children in the hospital being treated for cancer; I will not take for granted the little moments that make life so sweet, as well as the moments that are difficult--because it could be worse!!!
Is there something you can do for Childhood Cancer Awareness Month?
Tuesday, August 23, 2011
I can breathe!!!
Dr. Li called and said.... (Drum roll please.....)
Both scans came back good. YAY! No tumors in his chest, and the MRI was good. It did show the spot from the bone scan; his body is trying to heal that wound, especially the bone they took out, so there is extra "stuff" there. Sorry, I don't know how to describe it... I should know more after I talk to Dr. Pham Thursday.
for EVERYTHING you have all done for us. It is truly appreciated!
Both scans came back good. YAY! No tumors in his chest, and the MRI was good. It did show the spot from the bone scan; his body is trying to heal that wound, especially the bone they took out, so there is extra "stuff" there. Sorry, I don't know how to describe it... I should know more after I talk to Dr. Pham Thursday.
So, thank you to all of you for your faith and prayers for Aiden these last few weeks. He is doing really well! We will have to keep an eye on his leg, make sure it doesn't come back. Dr. Li does seem to think it will most likely come back sometime. But, as of right now, no chemo or radiation. YAY!!!!!!!!! Again, a BIG thank you from our family, especially Aiden,
Sunday, August 21, 2011
Waiting.......
We had the MRI of Aiden's leg and CT scan of his chest done Friday. The Radiologist personally did Aiden's MRI scan... Is that normal? The tests took almost two hours. He did really well. They did have to put him under, but he came out of it really good. Here's a picture of him when they brought him in to me.
After the tests, he got to ride down in the wagon. He had so much fun. He looks so small! And they even gave him a little giraffe. :-)
We won't know anything until the oncologist calls this week..... Yuck. I hate waiting for results. No fun. Trying to stay busy this weekend.
Aiden is still doing good. He is getting shy around new people; from what he knows, they take him away from Mommy and give him shots, etc. Poor critter. Friday night he was awake (all night...) and whenever even Austyn would try to hold him he would cry for me. I think he thinks I'm going to leave him again. I hate having to do it at the hospital. You would think that after the first few times it would get easier, but it doesn't. Handing him over to a nurse, trusting the doctor's completely with my son, is so hard. All I can do is pray that he will be taken care of while he is away from me. It's such a helpless feeling.
I will post more when I know what's going on. Hopefully it will be all good news from here on out!
After the tests, he got to ride down in the wagon. He had so much fun. He looks so small! And they even gave him a little giraffe. :-)
We won't know anything until the oncologist calls this week..... Yuck. I hate waiting for results. No fun. Trying to stay busy this weekend.
Aiden is still doing good. He is getting shy around new people; from what he knows, they take him away from Mommy and give him shots, etc. Poor critter. Friday night he was awake (all night...) and whenever even Austyn would try to hold him he would cry for me. I think he thinks I'm going to leave him again. I hate having to do it at the hospital. You would think that after the first few times it would get easier, but it doesn't. Handing him over to a nurse, trusting the doctor's completely with my son, is so hard. All I can do is pray that he will be taken care of while he is away from me. It's such a helpless feeling.
I will post more when I know what's going on. Hopefully it will be all good news from here on out!
Thursday, August 18, 2011
Some Good News!
We went to see Dr. Pham and Dr. Li on Tuesday. They had the test results from the 2nd surgery. There was some residual cancer spots found from the tumor site but the margins were clean from the surgery, which means it didn't grow outside of the area they set for him. As long as it was inside those areas they were okay with it.
We do still have to do the CT Scan and MRI tomorrow. They want to check up on that spot on his leg that showed up last week on the bone scan and check his chest and arms for tumors. As long as everything is good, no chemo or radiation! YAY!!! As long as it doesn't come back, which there is a high likelihood, we are clear.
Thank all of you so much for the prayers and thoughts. It has been working!!! We feel your strength and wouldn't be as "together" (if we ever can be in this situation) as we are right now, without all of you. Thank you!
Aiden is doing great. He is up and walking (yes, I said walking... He started at 9 months...) and playing and loving life. He has no clue what everyone else is so worried about! I'm so glad he won't remember all this, even though Austyn and I will NEVER forget this difficult time. But, as for Aiden, he is GREAT!
We do still have to do the CT Scan and MRI tomorrow. They want to check up on that spot on his leg that showed up last week on the bone scan and check his chest and arms for tumors. As long as everything is good, no chemo or radiation! YAY!!! As long as it doesn't come back, which there is a high likelihood, we are clear.
Thank all of you so much for the prayers and thoughts. It has been working!!! We feel your strength and wouldn't be as "together" (if we ever can be in this situation) as we are right now, without all of you. Thank you!
Aiden is doing great. He is up and walking (yes, I said walking... He started at 9 months...) and playing and loving life. He has no clue what everyone else is so worried about! I'm so glad he won't remember all this, even though Austyn and I will NEVER forget this difficult time. But, as for Aiden, he is GREAT!
Sunday, August 14, 2011
Bone Scan and Blank Days
It was so sad, he just cried and cried on the table. Nemo was playing on a movie screen above his head but he isn't at the age to be pacified by TV. So he cried.
They scanned the legs first, then the chest and arms, then the head. He finally fell asleep when we were at the head, which worked well. After the tech looked at the images he noticed something in the right leg, which is "the" leg. He tried calling the Radiologist but he was at lunch. So the tech told us we needed to scan again. This time it was much easier and the results were clearer because Aiden was completely still. And there it was again. I think they call it a "hot spot" on the bone scan. There was Aiden's perfect little skeleton self on the screen above us, with a nasty, ugly spot on his leg. The tech got ahold of the Radiologist and explained what he saw before sending him the images. He asked us if it was a cancerous tumor removed, and we said yes. He was talking low, I couldn't hear all of what he said, but it sounds like we will be going for an x-ray of the leg. Of course, the Oncologists office closes at 2:30 on Friday, so we have no "official" results yet. I think I may be sick, thinking of what it could be.
At home I sat and looked at the new calendar we have posted on our wall and all the appointments set for Aiden this week, the only thing we have going on in our lives right now. As of this moment, most of the days are full for this upcoming week, with different appointments each day. The next few days will be crazy, but as of now, nothing else is scheduled past Thursday. I love blank days. I love looking at them and seeing nothing to do. It is beautiful. I am excited to just see blank days. I really hope we can keep from filling them.
Wednesday, August 10, 2011
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)
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)
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