Tuesday, March 10, 2009

Results in and the news isn't great...

Well, the trip to the doctor's office did not provide all the results we were wanting. We found out that she does NOT have Wilms tumor, but rather clear cell sarcoma. So, it is worse than we initially thought. Here were his exact words: "It is worse than the good Wilms tumor, but not as bad as the bad Wilms tumor." Whatever that means. It does mean she will have a more severe dose of chemo which will be administered in-patient every third week and out-patient on the in between weeks. We have a whole schedule which lasts 25 weeks. So long summer vacation of my dreams. Welcome nightmare I never wanted to have.

Clint just had to ask the doctor what he called a "frivolous" question. Will she lose her hair? The answer is yes, about 2 or 3 weeks after we start chemo which should be next week. Anyone got any cute hats? Better yet, do you think I can get her to wear them? :) My dad was just telling me this morning how he bets Summer's hair will be bleached out by the sun this summer. I guess we'll just have to settle for tanned skin.

We still don't know the stage. They are doing a MRI and bone scan on Friday to see if it is in her brain or bones. If so, then it is stage 4. If not, probably stage 2. I don't know what stage 3 is. They did an EKG today to make sure her heart can stand the chemo (which is really hard on and often damages the heart). So far it is fine, but the heart Dr. scared me by telling me how her heart can be damaged and stop pumping right. As if I hadn't gotten enough bad news today already.

She completely freaked out when we were at the doctors office again today. She just does not believe that they are not going to hurt her. We had a little talk after we got home about how she is going to have to start being a good girl and doing what they tell her to. I told her I will not let them hurt her and if they do, I will hurt them. So, she shouldn't be scared of them. They are just trying to help her get better. We will see on Friday if this little pep talk did any good. I told her we are going to be going there a lot so hopefully she will get used to it.

Needless to say, I am going a little crazy right now. I still don't have all the answers. Never will though. I am even more scared than I was before, but I know I have to put on a brave face for my little girl. She does not need to know how scared and upset I am. So, I am going to focus on trying to be positive and providing her with fun-filled days as much as possible. I am glad we will get to go to her classes this week. Next week we will be in the hospital from Tues. to Fri. (more than likely--unless the news gets worse).

They say everything happens for a reason. Just wish I knew exactly what that reason was. Don't we all???


Stephanie said...

I am so sorry the news wasn't what you were hoping. I will continue to pray for you all. Stay strong... Summer will be cancer free before you know it.

ashleyjnc said...

Hello again

I hope your sweet girl is doing okay, she is such a sweet gem.

I know the hospital trauma from a lifetime of illness from Job's Syndrome, I am 24. I just wanted to let you know, that you might want to rethink telling Summer they won't hurt her, because, there are many things in hospital care that does hurt and it does make you sick, and she will question why "you let it happen" I know you by NO MEANS are, and am not implying that AT ALL, please understand that I am just saying from experience that it is important for her to know that they are going to do some things that are not pleasant, but, that they are trying so very hard to make her all better and that they are not purposely making her hurt. I know this is a daunting and long road ahead for you! I will keep you in prayer. If you are feeling scared or alone, please visit the riggsfamilyblog.com this is a wonderful family that has a daughter with cancer, but Brent has an online ministry. I think you may find some comfort and advice for the road that lies ahead for you and sweet, beautiful, Summer. I am sure you wonder where I came from, but you were posted on Cynthia's blog as Summer needing prayer.

~Ann~ said...

I cant imagine how traumatizing it is for your little baby. After all she has been through, I dont blame her for being scared of the doctors. I am so sorry to hear the news wasn't what you expected. I will keep sending up prayers.

Kimberly said...

I'm so sorry, I will continue to pray. I'll especially pray that her fear is gone.

Tiffany said...

Sorry to hear the news is worse than you expected. :( I hope you find out what stage cancer soon. I can't imagine your fear. Hang in there!

Kelli said...

I'm so sorry to hear this and I pray God's healing and blessings on Summer's life. Love her name...if I had a daughter her name would be Summer also.

Stephanie said...

Oh hon-I am soooooooooo sorry! I was praying for better news. I'm going to keep Summer and you in my prayers! Praying for a quick and successful 25 weeks!!!!

Bridgett said...

Oh man. ::sigh:: I was really hoping for better news for little Summer.

I'm sorry, Jennifer. But not all hope is lost. From the sound of the details, it truly could be worse.

I don't know about cute hats, but I'll look around and see what I can find.

Big hugs to you guys!


Beth said...

I'm praying for you and your family. I'm a new reader/poster to your blog and came across it from some one else's. I just read about you wanting to know about hats and such for your sweet daughter. Just yesterday I was reading through the serious life magazine from the riggsfamilyblog.com and they mentioned these bandanas that their daughter wears: http://www.ursheadwear.com/

I hope this helps some with your precious little girl. You will be in my prayers

Tricia said...

I didn't get this alert. Brigett mentioned it to me.
I'm so heartbroken that the results are worse then anyone had hoped for. Jennifer, i honestly dont have any words to make you feel better...lets be honest here. But darn it i wish I did. You two will be in my prayers til the end of this battle.
Many hugs to you ALL

Summer will be be sure as darling without her hair, and i think you will find some great hats, or yes even headbands. HUGS

Tricia said...

Here is one link for cute hats...check out the little newboys hats for girls. LOVE THEM, and could see summer sporting one.


Stephycce said...

Yes we all do.
Stay strong.