Distressing call today during my recovery nap! It was Dr. S, Cam’s geneticist from yesterday. He had reviewed the back x-ray (they just x-rayed his spine...to see if there is a chance he could have scoliosis) and Cam has a slight curvature of his lower spine.
Things got upsetting really quickly.
He told me that we need to get Cam BACK to Primary’s for an MRI. The concern is that, while most of the tumors that kids with NF1 get are benign and completely harmless, there’s a chance of getting another type of tumor. This kind is the bad kind...the kind I didn’t really think too much about when we were having our conversations yesterday in the clinic, I think I was in denial. With the kind of NF1 that Cam has, he has a slightly higher chance of getting this one (don’t ask me the EXACT name...I couldn’t tell you.) It is highly cancerous and grows at an accelerated rate. Now, what does this have to do with a slightly curvy spine? These kinds of bad tumors grow next to the spine and tend to push it out of alignment. I had mentioned to the doctor that Cameron tends to whine to us that his tummy hurts, and we can’t always tell whether it REALLY hurts, or he’s trying to get sympathy for something, but he said that we should take his complaints seriously, and just as a precaution, check to see if he’s starting to grow a tumor which is causing this bent spine.
As he’s telling me all of this information I was speechless! In my mind I was thinking the worst. "My son has this tumor, he’s going to die from this, and I gave it to him!" I know, I know...irrational thoughts! But these are the things going through my mind. I asked Dr. S how urgent it is that we get this test done. He said he’d like to see it done as soon as we could...within the next 2 or 3 weeks. He told me that he’d get the information to the MRI center, and he’d call me back with the information.
As he hung up, I looked at Steve and we had a whole conversation without words. He could tell something was wrong, but didn’t know the exact details. I filled him in, and then I HAD to call my mom. (She’s the one who goes with us to these appointments, and the one I turn to after Steve when I’m distressed and upset!) I told her the basics of the conversation, and she told me that if we had to go, she’d be there with me. I told her I was waiting for the doctor to call me back, and said good bye.
The tears were just rolling down my cheeks...my voice was cracking and my sweet son came over to me, and told me, "Mama, I’m gonna wipe away your tears." And then he gently did so! That didn’t help the flow of tears, but it did soften my heart a bit!
Doctor S called us back with the phone numbers and said that if we couldn’t get in with them in the next month, call him back immediately. I called the MRI people and got it scheduled for November. Then they told me that I’d have to register him and gave me THAT number. After all was said and done I was emotionally wiped out. I had a blank stare for a long time tonight. I kept internalizing, worrying, and mourning. YES, I did say "mourning!" I worry that I will lose this sweet boy who has been my entire life for the past 6 years. I fear finding out that he has this tumor, and what it will mean for my family. The one fear that is foremost on my mind is that he will slowly fade away, getting sicker and sicker, and I won’t have ANY way of helping him. I know I shouldn’t be thinking this way, but I do. I should just let the doctors do the tests BEFORE jumping to conclusions. I just have a hard time doing so. After all, he could be TOTALLY healthy, there could just be a curve in his spine. It could just be another one of those things that makes him him.
The interesting thing about this whole thing is that we wouldn’t even have a clue that he could have this problem if I hadn’t agreed to let them do this research using Cam. They don’t normally go around doing x-rays, bone density scans, blood tests and everything on everyone who comes in for a check-up. I just hope that if he DOES have anything, they will be able to treat it quickly and safely. I’m just so worked up over the whole thing...I don’t quite know what to do!
Things got upsetting really quickly.
He told me that we need to get Cam BACK to Primary’s for an MRI. The concern is that, while most of the tumors that kids with NF1 get are benign and completely harmless, there’s a chance of getting another type of tumor. This kind is the bad kind...the kind I didn’t really think too much about when we were having our conversations yesterday in the clinic, I think I was in denial. With the kind of NF1 that Cam has, he has a slightly higher chance of getting this one (don’t ask me the EXACT name...I couldn’t tell you.) It is highly cancerous and grows at an accelerated rate. Now, what does this have to do with a slightly curvy spine? These kinds of bad tumors grow next to the spine and tend to push it out of alignment. I had mentioned to the doctor that Cameron tends to whine to us that his tummy hurts, and we can’t always tell whether it REALLY hurts, or he’s trying to get sympathy for something, but he said that we should take his complaints seriously, and just as a precaution, check to see if he’s starting to grow a tumor which is causing this bent spine.
As he’s telling me all of this information I was speechless! In my mind I was thinking the worst. "My son has this tumor, he’s going to die from this, and I gave it to him!" I know, I know...irrational thoughts! But these are the things going through my mind. I asked Dr. S how urgent it is that we get this test done. He said he’d like to see it done as soon as we could...within the next 2 or 3 weeks. He told me that he’d get the information to the MRI center, and he’d call me back with the information.
As he hung up, I looked at Steve and we had a whole conversation without words. He could tell something was wrong, but didn’t know the exact details. I filled him in, and then I HAD to call my mom. (She’s the one who goes with us to these appointments, and the one I turn to after Steve when I’m distressed and upset!) I told her the basics of the conversation, and she told me that if we had to go, she’d be there with me. I told her I was waiting for the doctor to call me back, and said good bye.
The tears were just rolling down my cheeks...my voice was cracking and my sweet son came over to me, and told me, "Mama, I’m gonna wipe away your tears." And then he gently did so! That didn’t help the flow of tears, but it did soften my heart a bit!
Doctor S called us back with the phone numbers and said that if we couldn’t get in with them in the next month, call him back immediately. I called the MRI people and got it scheduled for November. Then they told me that I’d have to register him and gave me THAT number. After all was said and done I was emotionally wiped out. I had a blank stare for a long time tonight. I kept internalizing, worrying, and mourning. YES, I did say "mourning!" I worry that I will lose this sweet boy who has been my entire life for the past 6 years. I fear finding out that he has this tumor, and what it will mean for my family. The one fear that is foremost on my mind is that he will slowly fade away, getting sicker and sicker, and I won’t have ANY way of helping him. I know I shouldn’t be thinking this way, but I do. I should just let the doctors do the tests BEFORE jumping to conclusions. I just have a hard time doing so. After all, he could be TOTALLY healthy, there could just be a curve in his spine. It could just be another one of those things that makes him him.
The interesting thing about this whole thing is that we wouldn’t even have a clue that he could have this problem if I hadn’t agreed to let them do this research using Cam. They don’t normally go around doing x-rays, bone density scans, blood tests and everything on everyone who comes in for a check-up. I just hope that if he DOES have anything, they will be able to treat it quickly and safely. I’m just so worked up over the whole thing...I don’t quite know what to do!
10 comments:
*hugs*
Go ahead and pray...and go ahead and cry. I am so the same as you when it comes to wanting problems to be either fixed or resolved...or at least known about RIGHT AWAY. I worry, and internalize, and stress, and cry, and worry until I know exactly what is going on, and get a game plan for myself. So...my only advice...lean on Steve, snuggle with Cam, and go ahead and cry. Tomorrow will be a little esier to deal with.
{{{HUGS}}} Sounds like you've gotten some great advice already. Keep us posted.
Oh Dawnyel, I'm so sorry. ((HUGS)) I will be praying for you and Cam and Steve.
It sounds like you have the weight of the world on your shoulders!
Good Luck and keep us posted. :)
:-(
I'm thinking of you and your family. I hope everything works out for the very best.
Oh, Dawnyel. I'm so sorry:( I've found that prayer is the number one thing that gets me through. I hope you can find some comfort in all of this. I will be praying for you and Cam.
I hate to repeat what everyone else is saying, but I'm sorry, too. My prayers will be with you and your family.
:( I hope for the best, keep us posted.
What to do? You hold your baby, you let your hubby hold you- and your mom worry about details- and you just- do what all mommies do. Love their babies. Many thoughts- and it will be a positive outcome- it will. I'll be positive for ya. *HUGS*
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