Mom's surgery scheduled

On Monday we made the big leap and went to our first Michael Hoefflin Foundation grief group meeting. We were regular attendees of the family support groups, one of Elizabeth's and her brothers' favorite things to go to. (Elizabeth wanted to go to family group on February 12th so badly, but she was so so weak that we dared not take her. She loved the pictures and notes everyone sent home with her brother Mike for her.) Going to grief group was not easy. It was funny, though, because Matthew said as people started to arrive "Mom there's some new people!" I had to tell him that they weren't new... WE were the new people! I explained the difference between the groups and he totally understood. I said that the other group meets on the second Monday and that this group meets on the fourth Monday. The old group was for families with a kid who was living with cancer and this other group is for families when that kid with cancer died. He looked at me and said, "Okay, because Elizabethie died so this is our group," and went back in the kids' room to do his thing. He is so funny that way. I like that he can talk about her without crying every time any more.

Last night was hard. We couldn't sleep. I have been taking benedryl at night so I can sleep ever since a friend mentioned it to me. It has helped immensely. Last night I forgot to take it and when 11:30pm rolled around and I was still knitting, it clicked that I needed my benedryl! It took a long time to finally kick in, and I was just miserable. The late night hours are the worst because I remember being awake all the time with Elizabeth. Even when we were sleeping cuddled up in her bed, I would only sleep lightly, always afraid she would die when I was asleep--and I so didn't want that. I wanted to be there for her. I didn't want her to die feeling alone. So when I'm lying in bed alone, awake, and without her to hold... it's just the most empty terrible feeling.

I'm still working on all the thank you notes. We have so many thank you's to get caught up on. So many people did so many things for us both before Elizabeth died and after. I'm still getting notes here and there from ChemoAngels--Elizabeth so loved her Angels! She claimed you all as her own. I am so honored that they send me cards every now and then still. I can see why Elizabeth felt so special when Angel Mail came! I want the thank you's to be personal (Elizabeth always always was very adament about personalizing notes and writing or drawing very specific things for specific people.), so they are taking longer than I wanted, but hopefully in the next couple months they will trickle into the mail system. Please know that we are so so grateful.

So my "removal of breast lesion" surgery is scheduled. I am really not happy with my insurance right now since they did not and will not approve UCLA, but I can live with it (I hope!). I will have the biopsy done at Northridge Hospital (where both Matt and Danny were born) on Monday, April 9th, the day after Easter. I am awaiting insurance approval for fine needle aspiration of my thyroid nodules (under ultrasound guidance). The endocrinologist I saw on Monday, Dr. Barakat (whom I really really like), thought the thyroid problem was certainly NOT thyroid cancer, but could be a hormonal reaction sometimes associated with breast cancer. She was very much in favor for an aggressive breast biopsy ASAP. So that is the status with me. It is all very annoying, but I really can't complain.

Please remember that there are plenty of kids still fighting and too many families hurting. Keep them in your prayers. Thank you for the generous donations to the Elizabeth Hill Memorial Fund. We will be doing something in Elizabeth's name to benefit other kids still fighting, most likely through the hospital, but we are taking our time because we want it to be RIGHT. Of course, we will keep you all posted. Thank you.

Happy Fancy Rainbow Day!

Happy Fancy Rainbow Day!!
Now go have fun with your families. We are going to the cemetery with rainbow flowers for Elizabeth (Matt's request) and rainbow ribbon streamers on a stick to leave for her. We will also watch Magic of the Rainbow later today and eat dinner at the Burbank Elephant Bar, in honor of Princess Elizabeth. We just miss her so much and I wish she was here to see that we kept Fancy Rainbow Day going.

Fancy Rainbow Day

Well, Monday came and went and we are still breathing. It is hard to believe that Monday marked the first month without Elizabeth here for us to hold and touch and talk to. In a way, it seems like it has been forever without her. I can't begin to express how hard it is and how much we miss her.

Sunday, March 25th is Fancy Rainbow Day. I'm so sorry that Elizabeth isn't here to share it with us. She created Fancy Rainbow Day last year, and this year was to be our second annual celebrating of her self-designed holiday.

Fancy Rainbow Day came about last year in reaction to St. Patrick's Day. Elizabeth had major surgery on March 8th last year, and was hospitalized until St. Patrick's Day (which happened to be a Friday... I remember it clear as day). I was with her in the garden at Children's Hospital Los Angeles waiting for Dad to finish something in the hospital before going home. Her surgeon, Dr. Stein, happened through and stopped to say hi to her. Elizabeth was wearing something with green (I am pretty sure it had either Ariel's tail or flower greens or something like that... I'm hoping the finer details come to me eventually as my brain fills in those kinds of little things) and I was wearing mostly brown, but my t-shirt had a little shamrock on it. Dr. Stein teased that he wouldn't pinch Elizabeth because she was wearing enough green, but that Mom probably wasn't. Elizabeth thought that was so funny! She got such a big kick out of the requirement of wearing green for St. Patrick's Day. It made quite an impression on her.

Later during the following week, Elizabeth said that pretty soon it was going to be "fancy rainbow day." I, of course, asked her what that was to which she responded "on Fancy Rainbow Day everyone in the whole family has to wear their favorite color." Then she pondered that a few seconds and added, "well, maybe not their favorite color, but at least something very color-full." I asked her when it was and she said "Saturday" which happened to be March 25th. She had me mark the calendar and added that we had to go out for dinner in our fancy rainbow colors on that night. I asked her if it was always supposed to be on March 25th like a birthday is always the same date (and Halloween and Christmas...) or if it was always supposed to be the third Saturday (like Easter and Thanksgiving change dates) of March. She said that it was always March 25th (which I found out happens to be a friend's birthday--happy birthday, Amanda!). And that is how Fancy Rainbow Day was born. It was important to Elizabeth to wear fancy clothes in pretty colors and spend family time together at our favorite restaurant (which is, for those uninitiated, the Elephant Bar in Burbank--although any Elephant Bar would do in a pinch, even the one in Anaheim)... so important that creating a holiday just for that purpose suited her. It was a guarantee that we would spend every March 25th doing just that. I am just so sad that she won't be here with us to see her holiday celebrated again.

If Elizabeth so inspires you, wear colors for her on Sunday. Go out and celebrate living and loving with your families.

Elizabeth's teacher, Mrs. Preis, came by today and she told me that the class is having a celebration on Monday in honor of Fancy Rainbow Day. How incredibly awesome is that?! I popped in on the class this morning just to see them for the first time since Elizabeth died. I could only stay for a few seconds because I was so on the verge of tears, but it was good and hopefully next time I'll be able to hold it together for a little longer. Mrs. Preis also brought me a book that the class had written and illustrated all about Princess Elizabeth. I will have to scan it in and post it up on her Everlasting Memories tribute website. It is so amazing and is the best present I've received (along with the Magic of the Rainbow book that Caitlinn brought me to read to Elizabeth when I visit her at the cemetery) that isn't from my own kids. Kids are just wonderful. It is only through these kids (Elizabeth's fellow cancer survivors and Brownies and classmates) and the boys that I am able to find some relief--some way of healing and relieving the hurt. I just feel such a tie to them because they loved her so much and made Elizabeth's life so full. Sometimes I still can't believe that she is gone.

As for me...
well, I have no real news. My breast surgery is in the process of being scheduled ASAP. An aggressive sample (meaning bigger than necessary is how I am interpreting that) will be taken and biopsied. The surgeon I've decided on (not my first choice since my insurance has denied every appeal to be treated at UCLA's breast center) seems to think it is more likely to be cancer than not, but he also tends to err on the side of caution (assume the worst, be grateful if it's not). I won't know for sure until the surgery if it is or is not cancer. Wouldn't it be nice if that were the only problem?

Unfortunately, I also have thyroid nodules. I found a lump at the base of my neck (also on my right side, same as the breast) the day after Elizabeth died. I thought maybe it was from crying or a physical manifestation of the grief and mourning. It didn't go away. I finally had an ultrasound of my thyroid two weeks ago, which showed a large (2 cm diameter) nodule on the right side and two smaller (0.6 and 0.7 cm diameter) nodules on the left within my thyroid gland. They are complex nodules, meaning both fluid filled and solid, so it is not simply cystic. I am seeing an endocrinologist (gland specialist) this coming Monday who will give me her recommendations. I am expecting a fine-needle aspiration to be scheduled so that cellular samples can be drawn and pathology can determine if it is possibly thyroid cancer. Thankfully, thyroid cancer when caught early (much like breast cancer) is typically cureable... as long as it's not the ultra-rare shouldn't be occurring kind. Funny, I don't find it comforting that as long as it isn't rare it is cureable, because frankly, rare actually does happen to some people and I don't like our track record.

Regardless, I am simply praying that the two incidents, breast and thyroid, are NOT related. I wouldn't even be scared so much if both are different kinds of treatable cancer. I would be very very very scared for my family if it is linked because I know what systemically spreading cancer looks like, what it smells like, what it does and what it steals.

Tomorrow I am starting on Elizabeth's leftover cancer fighting supplements. I have a whole box, untouched. A couple of close friends told me to take them before when all I was facing was possible breast cancer. I couldn't. They were meant for Elizabeth. How could I take them? Part of me resented the supplements--they failed us. They didn't save Elizabeth. She died anyway. And besides, I didn't have cancer as far as I knew. I probably didn't need them. It would be admitting it was possible. Admitting cancer could be right back in our daily lives spitting in our faces. Well, I'm not going down without a fight, and I am afraid a fight is coming, so I'm taking the supplements. I hope it is unneccessary, but I am going to cover my bases and do what I can right now. Maybe I'll start eating bio-organically, too, but only after I finish the last bag of Ruffles in the house. I'm craving some salt...

I love you, Elizabeth.

Watch ABC World News tonight

There is going to be a piece on ABC World News with Charles Gibson about Adult vs. Child therapies. A news crew was over to film an interview about Elizabeth. Mom did wonderful.
It is part of a larger segment, but there is supposed to be some of the footage from the interview they did at the house.
UPDATE: The portion on Elizabeth got cut from the larger story. It may be on Good Morning America tomorrow.

Missing Elizabeth

I miss her so much.

There is a huge hole that just won't go away. Every time I leave my bedroom I have to pass through Elizabeth's room to get to the rest of the house (terrible set-up now, but it was always nice before to have our rooms adjoining). I'm finding myself either holing up in my room or staying in the living room to avoid walking through. I just keep wanting her to be back in her bed, telling me to rub her tummy or scratch her back or put lotion on her. I am miserable with loneliness missing her, no matter how many people are around. I would give or do anything just to hold her again.

I already knew she wouldn't outlive me. Her diabetes alone was severe enough that to make it to early adulthood would have been challenging. I knew she could never be pregnant and that I'd never experience that. I had already grieved on some level for all that I knew she'd never do or have as an adult, but I still thought she'd at least have her childhood. We knew she was dying, and yet it is still a shock.

She gave me so much. I wish there was more I could have done for her. Everything we did, all the treatment and the research and switching hospitals and just everything, all of it couldn't save her. It should have been enough and it wasn't.

How many more kids? How many more families?

I am so thankful that I was her mommy. As much as it hurts, I still feel so blessed. Is it possible to feel cursed and blessed at the same time? I think that describes it pretty well.

The boys want to go to Disneyland. We are taking them tomorrow and staying in one of the Disney hotels tomorrow night. We won't be back until probably late Saturday, so don't think we're ignoring any phone calls!