Thursday, March 12, 2009

Lost in the dark

Right now I feel so lost. I just don't know what to do. I talked to some family and friends and it seems like we should take Summer to St. Jude for a second opinion and possibly treatment. I am sure they have dealt with patients like Summer before, but I'm not sure they have here. There are only about 40 cases a year of the type of cancer she has. Clint called his dr. last night to get his advice. His doctor informed him that this is the same type of cancer he had, only in kids. We never knew (or thought to ask) the exact type of cancer Clint had. To us it was renal cell carcinoma and it was bad. Last night the dr. told Clint that this is what he had - clear cell. I am so confused right now because Clint's cancer is not treatable with chemo and radiation. They do have some experimental drugs they can give him that might shrink it, but don't ever make it really go away. Luckily, he has not needed them. His last scan was clear. He has another one next month. So, getting back to Summer, I don't know why they would treat her with things that won't work anyway and may damage her little body. They say it is different with kids, and I don't really know what that means. Does it mean they just want to try to prolong her life more than an adults? Or are the cells really different in kids? Do they know what they are doing? What do I do? What's best for her?

First thing I need to do today is call St. Jude. They are in Memphis so that is an hour behind us. So, they might not open until 9:00 my time. I am considering getting Clint to take Summer to Playgym, but I really don't want to miss it either. I will try to call at 8:00 and see if by some miracle I can talk to someone and get the ball rolling.

On the plus side, she should have lots of fun at Playgym. We have a couple of outfits picked out for the pictures. Not sure what we will end up going with yet. I still haven't figured out what I am wearing, but I wish it was going to be a warmer day. I was wanting more of a spring look since these will be our Easter pics. I have never been to this place before for pics (which probably means it is expensive LOL), but I have heard great things about their pictures. I hope we are all smiles today and I know a lot of that will depend on my mood. Let's pray I'm happy!

I wish I could let go of all the stress I feel, but then I might not get anything done. It is hard for me to just sit back and relax especially at a time like this. Maybe if I could have a glass of wine, it would be easier. :) But, it is probably a good thing I am going to be in this competition because I am definitely not drowning my sorrows in alcohol right now like I could be.

I better get on the St. Jude site and see what I need to do. Once I get this off my back, the fun can begin!!!


Stephanie said...

Oh hon I think you should follow your heart and let it lead you! I truly to believe that it will lead you in the right direction.

I have heard wonderful things about St Jude and I think if they are able to help Summer that would be wonderful!!!!!

Keeping your family in my prayers today!

Denise said...

I have been reading your blog for about a week now and wanted to leave you a note.

I wish I knew what to say, but I believe that God will give you the knowledge you need to make the right decision. One thing I learned when my friend's baby got sick is she believes that it's always good to get a second opinion, especially if you are uneasy about the 1st.

I pray that things get figured out for you and your sweet daughter! Hang in there!

Susan Anderson said...

Hi Jennifer

I was sorry to hear about your news. My cousins little boy which is 4 1/2 has been at Vanderbuilt for a couple of weeks. He had a brian tumor and has been a miracle to all around him. He is doing well now and has come thru alot in the last week. With family and friend and God on your side I pray that he gives you the strength and wisdom you need to get thru this. Summer really sounds like a strong child. I have seen alot of children be helped over the last 20 yrs that did go to St. Jude. I will keep you in my thoughts and prayers.

Susan Anderson

Bridgett said...

I always recommend second opinions. Always. Especially when it's dealing with children and a disease like cancer.

Keep us updated, sweetie. We're here for you.


The Stallings' Clan said...

I am so glad that you are considering a second opinion, especially with St. Jude. I have always believed they were the best in dealing with childhood cancer. With something this important I always feel that it's best to get that second opinion. The more knowledge you have the easier it will be to make the best choice for your family and Summer. Just continue to pray and follow your heart. We are praying for you and love you!!!

Stephycce said...

Oh good luck!
And of course get a 2nd opinion hun!!

the mol said...

The reason why cancer treatment is different with kids is just that they react differently to medication sometimes. Their metabolisms don't operate in the same way as adults. That is also why medicine that makes adults tired will make kids hyperactive, like Benadryl (although Benadryl usually makes my son sleepy).

As for the damage caused by cancer treatments, I've covered quite a bit about that over on my blog, and my husband has done the same. It is difficult to think about, but the choice is obvious--do the treatment and get rid of the cancer.

Radiation can cause a little bit of stunted growth, just in the trunk area. Her sitting height would be affected, if it happens at all, but not by a lot. Plenty of people are a few inches shorter than they were supposed to be in either their legs or their torso.

Chemo drugs each have their own issues. Some don't have much in the way of late effects. Others do. Some aren't that harsh even in treatment; others knock the patients on their behinds. Zofran (anti-nausea med) is your friend during and after chemo.