Day 29 and counting.....

So, tomorrow is Day 29 in the hospital (longest stay of yet) and Jill's ANC is still ZERO. She got platelets today, maybe that will give her a boost! Yesterday was a little stressful....she had to get an IV in her hand (only 2 attempts this time, but it still hurt...I cried right along with her...because she so rarely cries) for her monthly kidney test. I carried her down to the procedure room. She was so excited to be off the unit! It was sad for me to watch her eyes dart around like a puppy in a new kennel surrounded by new dogs....I think she was smiling a little (she was wearing her mask, so dutifully). She was happy, but it just made me realize how completely isolated she has been. So we got to the treatment room and she laid on a table for about 10 minutes while they injected a dye into her hand. She just stared at the ceiling and me and I sang to her...she twirled my hair and attempted to suck her thumb, then remembered she was wearing a mask and didn't make a fuss about it. She just held my fingers really tightly with her thumb-sucking hand and every time I finished a song she'd sigh, "Again". I held her in my lap for another 20 minutes while we waited for the transport guy to walk us back to her room. Any other 2 year-old would be a nightmare in these situations, but Jill.....she just rolls with it. They say sit, she sits. They say be quiet, she's quiet. I adore this baby for her patience and calm while in the storm. She's got it together way more than the rest of us.

When we got back to our room, we were told that unfortunately, we would be moving into a shared room (this makes only the 3rd move this hospital stay, so I guess we're "lucky"....what a vague and contradictory term to use in this situation). Gone are the peaceful quiet times and tv on only when we want it. Gone is the space to store the buckets of books and toys and clothes and food.....we still have a little space and our roommate is a beautiful and very positive 12 year going on 20 year-old girl who is delighted to finally be sharing a room with sparkly little Jilly.

After we got settled in our room, Jill donned her cutest blue frilly poofy tutu, her fuzzy butterfly wings, her pizzazy tiara with alternating pink & purple jewels, and with magic wand in hand made the double doors open out onto the world beyond with a "Bibbidy Bobbidy Boo!" There were 4 young people standing in a huddle right outside....they were holding each other & had obviously been crying a lot (the Pediatric ICU is right next to the HemOnc unit, so there are very often gobs of family and friends waiting to visit or hear news of how a young loved one is faring....passing them in the hallway always makes me a little sad as the kids they are there for are usually in pretty dire situations....car accidents, sudden strokes, severe asthma attacks....many of them are in comas.....it's especially hard to see families of kids who were in our unit just a day before....we could be there at any moment, just like them). One of the guys in the huddle noticed Jillian standing there in her prettiest pretty girl garb, little bald head, look of surprise that her magic worked (again), and he alerted the others.....they all stared at her, adoringly and smiled, and waved. The doors closed, as they do after a few seconds, and a look of sadness came over Jill's face. "It's okay....do it again!" I encouraged her. "Bibbidy Bobbidy Boo!" she exclaimed. I subtly pressed the button and the doors (magically) opened once again. This time a crowd of 8-10 had gathered, many teary-eyed and tired, but all gleaming with delight at this little happy princess, hooked up to an IV pole. We did this again and again....by the 5th time, the hallway right outside of the door was absolutely packed with members of this family (I later found out that the girl they were there to rally around was a teenager who had overdosed...she was taken off her ventilator the next day). They held hands and waved at the little angel before them....her loyal subjects. Jill was so thrilled to have all of this attention. People she believed were appearing out of nowhere just cuz of her fairy princess powers. People that shared in her joy even through their deepest sorrow. They wanted her to keep coming back, to take their minds off their pain for a few minutes, but my royal highness tires easily of such activities, so she changed directions and danced happily down the hallway to spread her love in other ways. This experience brought home one more time how truly blessed I am to have this little girl in my life. To be one of the few who gets to hold her tightly ever morning, noon, and night while she falls to sleep, to smell her sweet baby breath (even in the morning, it just smells delicious!), to be her Prince, her Troy, even her Evil Feen (Queen). I love this dolly.

Tuesday brought a few exciting moments.....first of all, our good friends Missy & Renee and their daughter Rhiannon came to the hospital to give us a care package. They had arrived the Wednesday prior and we had great intentions of spending a little bit of every day with them. Unfortunately, they were sick and it just wasn't possible. This cold/flu season has been a doozy...I am glad we called off the visitors (at least those who would have to fly in) as likely, this would happen time and time again. At least they thought to make a mini-vacation out of this before they made their reservations.....they got a hotel in Anaheim (right by Disneyland) and visited the parks every day of their visit. Their 4 year-old daughter had a fabulous time (she was even invited as a very special guest into the Princesses' Castle!) and I think they did too....but it was very hard not to be able to see them. Their friendship means the world to us and it ripped my heart out that they were 45 minutes away from us for 6 days but nowhere close to being with us. The scrapbook Missy put together of our family (Wizard of Oz themed, of course) is phenomenal! The greatest gift I can imagine.....I couldn't hold back the tears.

After our friends left, I was relieved for the WHOLE DAY by a lovely young woman named Jamila. She is the daughter of one of Matt's co-workers (and an incredible woman herself). I had only met her once....she helped out (very quietly and humbly) at the Torrance Bone Marrow Drive....she introduced herself to me as she was leaving and I was touched that someone we didn't know would dedicate so much of their time to help our baby. She offered to help out with Jill a week or so ago (when I put out the APB for assistance and Jill came down with her fever), but it didn't work out, and honestly, I didn't expect I'd hear from her again....when I was her age, I didn't do much volunteering!! Anyway, she emailed me on Monday that she could come stay with Jill as long as I needed her to on Tuesday, and that she did. She played with and cared for Jill all day....until Matt came to relieve her after work. I got to go home and granted, I cleaned, it was refreshing and freeing to be out of that place! I don't know how Jill does it. I'm going nutty in there!!! So thank you Jamila......that kind of favor cannot be reimbursed. Jill had a blast with you and I had a BIG break. You are an incredible human being :)

So while I was home on Tuesday, I called my Aunt Mary (who lives in Fresno) and she reiterated that she would be available anytime we needed her. I said, "Okay, how about yesterday?" And she hopped in her truck with a week's worth of clothes and made the 6 hour drive down to SoCal. I love spontaneous people!!!! She is currently at the hospital with Jill (I left her there at noon today and she is spending the night tonight while Matt attends to new water damage....don't ask) and I sit on my butt typing (actually, when I'm done here, I intend to play with Anna a little and get some really good sleep).

So God Bless all of the people who have reached out.....we have 'em lined up to help over the next 4 days....without all of you, they would seriously have committed me already. I don't know how to thank you. But I really feel like you all (family or not) are our family. This really is how the world should work. I don't know if I would be an iota of who you have been to us if the situation were reversed, but after having this experience, I sure will try. Once you feel it working for you, you can't help but want to make that magic for other people. What feels small and insignificant to you (bringing up some split-pea soup, making a meal, visiting, calling, emailing an encouraging message, babysitting, helping with house repairs, cleaning, driving Anna around, sharing recipes or giving me a cookbook that you knew I'd love, mailing us a donation, organizing fundraisers, hiking to raise funds for the cause, making hats/blankets/clothes for Jill, etc....), it's all huge to us.

Please keep in your prayers the Rutz family (Michael, Mary, Adam, Aaron, and Isaac). They are at UCLA, 3 days away from Aaron's bone marrow transplant. Adam (12), Aaron's (9) brother is his donor. Mary keeps all of us updated in her daily blog....I'm on the edge of my seat with this one. It's big. They are a very strong family with very strong faith. I admire the courage in every single one of them. But they definitely need positive energy aimed in their direction.....so muster it up and send it!