Thursday, March 12, 2009

What kind of cancer is this anyway???????????

Well, we found out today that she may have an even more rare type of cancer than clear cell - possibly rhabdoid. They are not exactly sure this is what it is or what stage yet, but I am prepared for anything at this point. It seems like everyday it gets to be a worse prognosis. Tomorrow we have an MRI and Bone scan, along with a radiation prep., so we should find out more answers regarding staging. If it is in the brain or bones, it is a stage 3 or 4. Type of cancer, apparently still to be determined. I just can't believe they still don't know, but I am glad they are really studying the tissue they removed so we can get the best treatment possible.

We went in to talk to the doctor about getting referred to St. Jude. Not sure where we are on that. By the time we were done talking with the drs., it was too late in the day to get a call in to St. Jude. So, I don't know if they are going to wait until tomorrow afternoon to get more info before calling St. Jude, but I kind of think they need to do it in the morning. It seems like there is a time frame we are working with, at least according to the radiologist who wants to follow exact protocol (treatment should begin within 14 days of surgery). Myself, I don't see what a few extra days is going to hurt. If we do get them to refer us to St. Jude, it might slow the process down, but I think it might be best for Summer to go there. They have not convinced me otherwise although they say the treatment will be the same at both places. Time seems to be of the essence, but it is taking them a long time to determine the exact type of cancer although they are spending a lot of time studying it. Not sure if that sentence makes sense, but my mind is somewhat muddled at this point.

We have to be at the hospital at 6:30 in the morning. Anybody got a spare rooster? LOL I don't think even roosters will be up at that hour. I am anticipating another long day.

I want everyone to know I appreciate all the prayers, comments and phone calls, even if I don't answer them. Sometimes I just have to cut the ringer off because I don't feel like talking. Answering phone calls tends to make my voice start quivering and the tears start flowing. So, don't be offended if you don't catch me on my cell. I am glad to know that so many people care. I really do have some awesome friends and family. As I get more answers and some of the uncertainty goes away, I am sure I will be up for more conversation. Right now, it just seems to be getting worse everyday so I'd rather just let it all out here.

On a different note, I got to watch my 5 1/2 month old grandbaby for a little while this evening while her mommy was visiting her daddy in the hospital. She was so precious and helped to take my mind off of things for a while. Summer also enjoyed seeing her which was another plus.

I hope tomorrow is not as bad as I am expecting. Summer will be put under anesthesia twice. They will have to access her port. I am really dreading that because I know she is going to be freaking out. If only I could come up with a way to make it fun. I'm sure I'll be racking my brain all night. Hopefully, I will get some sleep although I don't feel a bit sleepy right now. Where is that sandman???

10 comments:

Tiffany said...

You poor Momma! I can't imagine the immense pain you must feel for your little girl having to go through this. Please know that even complete strangers like me are thinking of your family and praying like there is no tomorrow for your little one too!

Stephanie said...

There is something for you to see over on my blog.

If you don't like it or don't want it to be shared, just let me know.

My thoughts are with you guys. I am praying for good news as soon as possible.

~Ann~ said...

It seems like it is neverending. I hope that she can get into St. Jude. I have heard good things about them and I agree with. I continue to pray for your family.

Bridgett said...

The empathy I feel for you, Jennifer, is unbelievable. I feel your pain and hurt. I wish I could take yours away...but I know that's impossible.

I wish today to be as easy for Summer as possible.

Much love to you all...
Bridgett

Alicia said...

Hi! i came over from Stephanie's blog. Just wanted you to know I am praying for your family!

The York Report said...

I just wanted you to know that Summer, You, and Clint are in our prayers.
I work with someone from Memphis who worked in Radiation Therapy at St. Jude and she says there's no better place. There is nothing wrong with getting a second opinion, this is your baby. I pray for good news from the tests today.

the mol said...

Even if she is not treated at St. Jude's, or if she starts her treatment elsewhere first, they will still discuss her case there. Pediatric oncology is like that. My son's case has been discussed in several places; any time his docs do something or enter a new step in his treatment, several other oncologists hear about it.

She also may feel better being treated close to home, and you'll be able to get help from friends and family. You'll need lots of that.

Susie said...

I heard about this from Stephanie's blog. I feel so sorry for you. I can't imagine what you are going through. I will keep your family, especially Summer in my prayers. I have posted your blog on mine for others to pray also. It is good when many are praying.

Karen said...

Hi Jennifer...I'm here from Stephanie's blog. I am so sorry to hear about little Summer. I am a huge supporter of St. Jude...I have seen the miracles they have done with children. My thoughts and prayers are with you.

the mol said...

Also, do you have EMLA for the port? It's numbing cream. Put it on about half an hour before port access and cover with TegaDerm or even Press N Seal. I bet that if you told her that it's EMLA cream, she'll call it "Elmo Cream."