Friday, August 21, 2009

Mixed bag

Lots of thoughts floating around - I have been wanting to sit down and type them out, but never make the time to flesh things out. For now I'll put out there what I can and see what gels later on.

Rebecca starts first grade next week. She is nervous about the transfer to the public school, which is understandable. I am nervous for her, remembering how I felt at the beginning of each school year. Yesterday her school held an orientation that she and I attended. R really dragged her feet on the way into the building; in fact she stopped at the front door and murmurred "I don't want to go in." But of course we did... We met the principal and one of the counselors, learned a lot of things about life at her new school, and got to tour the building. Rebecca was most impressed by the library, which was really nice. My girl is so loving books these days, that I could see her almost salivating as we cruised the shelves. We also saw the three first grade classrooms, so she'll have an idea of where in the building she will be. As we walked to the front door to exit, she exclaimed that she "loves" her new school and that it's almost better than her old school. Relief for mommy! This afternoon they posted the class lists at the door so we stopped by after camp to see who her teacher will be. We learned that our next door neighbor will be in her class, as well as two girls she knows from her current school. This is great news. There is one other girl from her old school, who is in a different class. Rebecca was disappointed that the other girl won't be in her class because other girl is not going to the same after-school program as R, who will be taking the school bus to where she and Carly are now. Other girl will be staying at the school for their after-school program. We had considered that for R but she insisted on coming back to where she is now. It's probably the more expensive option but for her peace of mind, it's well worth it. Besides, since Carly is there, we only have the one pickup point and that is worth something in terms of time and money.

Carly is moving up a classroom too, into one of the pre-K rooms. I just learned about it yesterday, and she will be there full time next week. She has always transitioned well, and since they mix the classes at the end of the day, she knows many of the kids there anyhow. Plus, a bunch are leaving for K and so there is space. She's not quite four so she must be acting right somehow! Lately she's taller, bigger, and better spoken than before. My baby is becoming a little girl right in front of me. I wonder if we will be looking at K for her next year after all. She misses the state cutoff by 6 days. I have generally been against starting school young, partly since I was one of the youngest and HATED it. But Carly's personality is so different from what mine was as a child; I think that socially she will probably be able to handle it well. We will see in about 6 months or so how she's doing so we can look into testing.

She's excited about her upcoming birthday. We are going to have it at Chuck E Cheese, per her request. When Rebecca was four, we had a full-class party for her there, and now it is Carly's turn. I've already reserved it for 10/18, in hopes that I will not still be in treatment in Columbus by then. The birthday season is starting for her; tomorrow she's going to a party at Memphis Kiddie Park and next week two classmates who are cousins are having a joint party at one's house. What fun - I don't get to see her interact with her peers that much so I am looking forward to observing my hurricane in action.

I am nervous about my upcoming appointment with Dr. Olencki and about my future plans. If we go forward with the IL2, I have lots of logistical questions and thoughts. I have read from others who have gone through this that it is good to have someone there with you as much as possible. On the other hand they can't do a lot for you so it's hard on them to be there. For me, I would love to have Jim with me but it's far more important that he be home with the girls, maintaining their routine as much as possible. Besides, Jim is not one for spending a lot of time at the hospital bedside; never has been, so it would be extra stressful for both of us. One of my closest friends from childhood lives near OSU, and I have reconnected with another close childhood friend who also lives in the area, so I have people nearby who care about me. I think the idea of being far from home and 'stuck' where I am is what is lurking in the back of my mind. It's not like we're talking about a long time, but just the idea of it makes me a bit uneasy. On the other hand, the hope of a complete response keeps me from punting the whole idea.

So what is this HDIL2 anyhow?

The 'official' site is here -

This part of the site tells more about what it does - How does it work?

Here is a statement from their website: "PROLEUKIN therapy differs from other treatments for metastatic melanoma and metastatic kidney cancer because it's an immunotherapy. Instead of directly inhibiting cancer cells, it works to activate the body's immune system to help kill them."

This is important... renal cell carcinoma is not known for responding to typical chemotherapy. So it's not like I can get hooked up to a regular chemo and poison out all of the cells. Instead, the idea is to supercharge my body to do it.

Yes, it is super-harsh stuff, so much so that many facilities don't offer it anymore, thus why many of us have to travel for it. But I will be well-monitored and if any problems are detected, we will stop.

I've had two people in my life suggest two different alternatives, both faith-based in some way. I am debating whether or not to pursue these opportunities, for various reasons. One is the doctor whose healing service I attended in January. He also does a specialized kind of acupuncture in his office but he is expensive and there are no guarantees, except maybe more visits? heh heh The other is a charismatic evangelist; my friend offered to take me to one of his services. I can't decide how I feel about that one - need to let it 'marinate' as one of my work friends likes to say.


Joannah said...

As a Christian, I believe in miraculous healing. I really do. We have a friend who was diagnosed with prostate cancer and it had metastisized to the bones. He had the men of his church annoint him with oil and pray over him, and the next bone scan showed no signs of cancer. However, he had surgery to remove his cancerous prostate. He's a wonderful testiment to the healing powers of faith.

BUT, I also believe that God can use the skills of the doctors and the capabilities of drugs to bring healing to our bodies. I think an approach that incorporates the spiritual dimension, and a medical approach is prudent.

I will pray that someone will step up and be there with you during IL-2 because I've heard how important that is. Perhaps you could post something on the KIDNEY-ONC list-serv and see if there's anyone in your area who would be willing to come be with you. I'll bet someone would be willing to do that for you. Those people are just amazing.

I'm so glad your girls are excited about their new school year. Make sure you find some time to meet with their teachers and let them know what's going on with you. It will help them to know how best to meet the emotional needs of your kids.


Pollyanna said...

The whole school thing is a big one. It is fun and exciting to see our little ones turning into themselves. It is fun to see who they are.

I read all the medical things you wrote. I don't really know what to say, but I did read it and it has me thinking. I hope everything goes as planned. You are kept in my thoughts.