Update...from a crazy lady!

Alright, so the first update is, surprise, I have a chronically ill child. Who knew? I have thought of Liz as a child who has had an "issue" since birth that has required the procedures, medications, medical attention, surgeries and hospitalizations... but I never thought of her fitting the "chronically ill" label. Really, I haven't. I even took on the Parent Advisor/Parent Mentor role at the hospital, which states that I have a child with a disability or chronic illness, without thinking I did.
Last week, a few things happened that made me think maybe Elizabeth fits this. I found myself, at midnight last Monday, trying to resist the urge to call Liz's doctor simply to ask his opinion. Can you imagine waking him only to say "excuse me doctor, is Elizabeth a sick kid; is she chronically ill?" He would have thought I'd lost it. I was in a panic though. I wanted an answer. Or maybe better said, I wanted to hear someone answer "No, she is not."
Instead of the doctor, I questioned Walter. Poor Holly, who is rejoicing in the fact that her sweet Spencer is finishing his last two chemoes and starting to return to normalcy after her hellish year(and who should not have to listen to my panic!), even got put through my crazy interrogation about Liz. I asked a social worker at the hospital who has become a dear friend - and who is probably now referring me to a social worker (kidding, I think). I literally started taking a poll of every knowledgeable person I know. Crazy, I tell you.
So I asked, and I heard what I knew. Yes, Liz is a chronically ill child. And with this last year of the added blood and marrow issues, she has been sick. BUT, she doesn't have to be called a sick kid and I will not treat her like a sick kid. We've done so well at not treating her that way, I won't start now. I just have been so determined all of this time to not have a sick kid. She would get "bad", she'd have a surgery and then she'd be totally fine for a while. And then, repeat. The last year has just been a whole new thing for us and that is why I started to question, started to panic. That, and the physical difference in her. If one more person asks her jokingly, "are you not eating your vegetables? Is that why you are smaller than your sister?" or "is Katilin taking her vitamins and you're not?" Really, she gets asked this all of the time lately.
Elizabeth is a chronically ill kid who feels pretty bad lately, and that makes me sad. Having a plan will help me not feel so panicked. I can do anything as long as I have a plan, so here's our latest plan at working towards an even better plan:
Liz will see the "big dog" Hem/Onc doctor here in Long Beach. He is the best of the best and I will feel better speaking with him, as we haven't seen him (only his partners) since last Spring.
On March 25th, Liz will see her GI doc and we'll develop a plan for helping her to gain some weight. That same week, we'll meet with a dietitian to help us with that too.
On April 7th we will meet with a new Hem/Onc doctor at Children's Hospital Los Angeles for a second opinion. A huge praise is that we were assigned the doctor I was praying for. He specializes in bone marrow disorders as well as platelet issues. Totally the perfect doc for Liz, I think. He takes no requests, but based on her records, her case spoke for itself, so we are seeing him. It will be a long day as she'll have a coupe hours of testing before the actual appointment.

This is the update. Two months from now I will update again telling you she's gained 10lbs and her blood issues have been solved and treated!!! Okay, maybe not, but I know, I pray, we will have a plan that works toward those things.

A million words

18 months ago


January 2010


January 2011




I should label these Exhibit A,B,C,D and take them with me to Elizabeth's appointmentes this much. What in the heck is wrong with my kid?! These photos make my stomach churn and my heart skip a beat. Literally. I was going through my photos to sort into albums, and the difference in Elizabeth is startling. 18 months ago sticks out in my mind because we were dealing with Elizabeth's abdominal pain and hoping to control it with pain management (injections and working with the Pain Mngmnt team at CHOLA). When it was decided to do her 6th surgery in January, I never knew that would serve as a turning point for her. Look at how great she looks in the first two photos! That surgery was so simple and had nothing to do with blood levels or organs. After her surgery in January 2010, the leukopenia, thrombocytopenia and neutropenia started. The fevers, fatigue, bruising, sunken eyes...all of it started weeks after her surgery. I thought she was simply anemic and requested a simple blood test. I had no idea what that test would show and that we were in for a (now) over a year long road of trying to figure out what is wrong with her.
These pictures speak a thousand, no, a million words. She is little and the sparkle in her eyes is different. It makes me sick.

Play ball!!!

Let's play ball, Jackson West!



Walt always wanted a dad to play ball with. Now he gets to be that for his son.









Grateful for kind and patient coaches


Hey batter, batter!


"Why do I have to stop on 3rd base?!"


First time tagging home base




Go Bees!


Snacks are always the highlight!


Opening day of Jackson's first baseball season is today! There is A LOT riding on this...he just has no idea. Kidding....kind of. Walter and my dad LOVE baseball. I can't express how much my dad loves baseball and Walter can quote more stats than anyone I know. One thing my dad and my husband have in common is that they both loved the sport, but didn't have a father who was as supportive as they would have hoped. Support goes so far in the life of your child, doesn't it? Gosh, my kids don't have to be the best at anything, but I pray that they will feel supported by time, money and encouragement in any sport/dance/ hobby they have an interest in.
Many of you know I have a brother, Travis. Trav, I am going to call you out a bit, but I know you can take it. Travis played baseball as a kid; my father had a son and together they could both love the sport, right? NO! Travis, who, ironically, is now a professional athlete as a hockey player, sucked at baseball! He chased bees, picked weeds in the outfield and played with who-knows-who imaginary people out on the dirt. Of course now we know that the it was just too slow of a sport for him, but then, especially as his sister being dragged along to his games to watch him not play, I thought of him as the worst player ever. Who knew he'd turn into an amazing water polo player and eventually a pro-athlete?
Anyway, my poor dad had no hope in Travis as a baseball player. He was incredibly supportive at Trav's choice in sports, and Trav would not be a Pro now had it not been for that support.
SOooooo, Jackson is now up to bat. Metaphorically and literally. No pressure : )
I giggled today as Jackson spent his first two innings outfield scooping dirt into his glove and high-fiving every player on the opposing team as they rounded the bases. He totally reminds me of Travis and I think it is great!
Who knows if he'll love baseball or even like it; time will tell if Papa and Walter get their baseball boy or not. In the mean time, he is having fun and we are in hysterics watching the hilarious chaos that is TBall. Have a fun season Jackson West!!!

Oh my! My dining table used for storage. Boo!



No dishwasher...and yes, we are using Christmas dishes.




Thank goodness we have a huge family room and I am able to store furniture there and have a semi-dust free place for us to be.




Come on in...just don't ask to sit down, because the living romm furniture is gone.

Ahhhhhh! My house is making me crazy! It may sound bratty to complain that construction, done out of want rather than need, is making me crazy, but it is. I have dust everywhere, a kitchen that is not functioning and things out of place. Worse, I have no dining room table for our family to eat at....and having that is something that is so important to me.
I once heard Oprah say (again, I am quoting Oprah, which is funny because I rarely watch her show) that your home represents you. More than how it is decorated, she was referring to how your home is and how it mirrors what your life is like. It hit home for me. I have an issue with having my home clean and things put away. I am a bit neurotic about it at times, and I realize it is because it is one thing I can control when my life feels uncontrollable. However, my closets... forget it. NOT organized at all. Do you understand my point yet? My home is nice and appears so put together...but if you look in some of my closets, you'd think a person other than me was in charge of caring for them. The metaphor for me is that me life seems pretty put together and like I have all in order, but the smaller details (the closets) are pushed to the wayside.
Anyway, because I feel the need to live in a "controlled" (clean, put together) home, this kitchen construction is driving me nuts and I can't wait to dust, organize...and cook again! Oh, and the next time you are in my home, I better not catch you looking in my closets! : )

Top of the world

There are places our family loves to go to...Signal Hill is one of them. Today is so unbelievably beautiful it would be a waste not to head up to see the view. It was gorgeous and the clouds look like cotton candy, ready to be grabbed. Perfect!

Jackson calls Signal Hill "top of the world"....





Not a care in the world on a day like today! Oh, my happy heart.





"Maybe that plane is going to see Uncle Travis in Canada!"



"Look, there's Canada!" For the last time kids, that is Big Bear! Oh my goodness, when do they study Geography?!














Yesterday they "hated being twins!!!" but last night they slept in the same bed. Silly girls.




How can you look at him and not smile? His Kermit The Frog grin (his wide smile reminds me of Kermit) makes my heart melt every time.






Sweet Kate

Having construction going on is so exciting for Jackson. He loves watching they guys and asking questions. Michael, our contractor, let Jax get in on the action and he couldn't have been more happy! He'd help a bit, wipe his brow, then sigh and help some more. Such a fun kid!


{Working up the courage to go under...}



{He did it!!!}


{Prepping the floor for tile. Mike is so patient with him.}



{Life lesson....if you are going to help with the fun stuff, you have to help clean up.}



{I let him take a picture of "his work."}

Skinny girl

One of my only pictures holding Elizabeth as a baby. I was horrible about allowing my picture to be taken. I choose to post this photo of Liz with this blog post because I love how chubby her cheeks were! Most often, children with horrible reflux are underweight. My girls were two of the most severe cases of reflux ever seen by doctors, yet the maintained their yummy folds of baby fat (partly due to the special formula they were on). So stinkin' cute!

Last night, out of nowhere, Elizabeth said "Some kids say maybe I will die because I am so skinny!"
I asked her what kids have said that - I couldn't assume at first that they hadn't, given that last month we dealt with a classmate telling both her and Katie that she was probably going to die in surgery.- When I asked, she replied "just kids."
I knew that no one had said that at all and she was just voicing a fear about herself without wanting to come out and say that she is afraid of being skinny and dying.

Uhhh, my heart! Walter was in the room and heard her and we both just locked eyes and bowed our heads. No matter how hard I have tried all these years, and especially this year, to keep her from feeling different, even special, it has caught up with us. The normalcy, the brushing-off of fears and alarm I constantly do, even the years of therapy she has had.... I can't keep her from her feelings and fears.

I explained to her how our bodies absorb nutrients and calories after we eat and how her doctors feel maybe her body isn't absorbing those things. I told her that we are going to start working on finding out if this is the case and also how she can gain some weight in a healthy way. She responded by asking when and letting me know that the stupid doctors have had enough time to figure it out. {ha!} I explained to her that her tummy issues are separate from her blood issues. She just kept insisting on knowing how long, how long, how long. I told her soon. She answered "yeah right, I've heard that before!" Oh, my sassy little girl!

How difficult it must be to have an identical twin and compare yourself to your healthy mirror-image. I worry as she is entering the pre-teen years how her body image is being affected by all of this. Oh man this is tough stuff!

Ultimately, all I could do was say I understood her frustration and disbelief that we will soon get answers and help her. And I looked into her eyes, told her not to worry and promised that she will not die because she is skinny.