Life is wonderful and difficult... and I am grateful!

Saturday, July 23, 2011

9 was fine, but 10 is...

This picture should have posted at the end, but didn't. We have a tradition in our family of reading the Dr. Seuss book Happy Birthday To You! In fact, the book I was reading from was read to me by my mom on my first birthday. I have read it while the girls were too young to care or one year, while they were fast asleep.... as long as it gets read the tradition contiues....

We started another tradition a few years ago, of going to Disneyland for the girls' birthday. I thought they may want to change things this year, as they are getting older, but they asked to go to Disney with only Mom and Dad. I know this will end soon and friends will top their invite list, so I soaked in every minute of time as a foursome.....Megan has passes to Disneyland and took Jackson home with her after he'd had fun with us, too, to give the girls alone time. It was a perfect day. Thank you, thank you, Mike, for getting us passes for the day. We couldn't have done the trip without your generosity and we are grateful!

Small World, a year apart. What a difference a year makes.

"It's a world of laughter, a world of tears. It's a world of hopes, a world of's a small world" Oh my goodness, we totally experienced this at Disneyland... we were in line for a ride and the woman in front of us heard Liz say she needed to sit back down (in the wheelchair). The woman reached into her bag and pulled out two Disney trading pins for the girls. The one she gave Liz was a butterfly! A BUTTERFLY! Liz wasn't wearing a shirt or hair clip, or anything that had a butterfly on it. I told her that when many see a butterfly, they think of Liz because of how butterflies always seem to be around her. The woman said "Of course they do! They are free and happy and make people smile. I knew to give her that pin." And talk about a small world, the woman has a 21 year old daughter who has Cystic Fibrosis and gets treatment at the same hospital Liz does. They even have two of the same doctors. It was a special encounter.

The girls were happy and silly at our Rainforest Cafe lunch.

They have no shame. This was taken right at the entrance to the restaurant and store. Right.Where.People.Walk.By! I thought we were going to wet our pants from laughing so hard!

Behold, the $17.95 dessert that we ordered out of peer pressure! ha! My girls couldn't eat this all even if we paid them and would have been happy with the small dessert that kids get for their birthdays at the restaurant. However, the look-alike-kid from Jerry Maguire, who was seated at the table next to us, had this chocolate mountain delivered to his table. We totally caved and ordered one for the girls.

Look at Kaitlin's face, just soaking in hearing people sing to her. Yes, Kate, you are SO special and deserve to feel so!

Sneaking make-up, sass at times, new talk of boys being cute...I am fighting them acting too old, too fast. Inside I was quietly happy that they are still "young" enough to choose a stuffed animal at the gift shop.

By about 7:00pm, Liz fell asleep in line for a ride. Sweet, sweet Kaitlin was kind enough to not shove her off of her shoulder, though I know she may have wanted to.

It's fun to be 10- Day 2

These aren't even half of all the cards the girls received! I asked friends to send a card or drawing to the girls to add extra cheer this year, and the response was AMAZING! I can't explain how giddy the girls were to get mail each day and to read what everyone wrote. EACH one was appreciated and I am grateful!

I saved one gift each for the girls to use in a scavenger hunt in the evening. My kids LOVE a good hunt! I cannot tell you how good they are at figuring out clues and riddles; what took me 25 minutes to plan and write out, they solved in less than 5. Those clues were difficult but the girls were awesome at solving each one.

A few of their gifts.... Liz looks adorable in her new apron!

Kaitlin has been wanting a "real" guitar for a while. We decided it isn't just a phase and got her one.

Make a wish, my Liz.

A friend, Cassie, dropped by earlier in the day with a Creative Cakery cake for each of them. Ironically, they had the same "hula" cake at their first birthday party. So fun!

On their actual birthday, the day after Disney, the girls chose "Ms. Bonetati's" restaurant....the rest of you know it as yummy Cheesecake Factory.

They lost their darn minds as the meal went on. By the time their dessert was delivered by a handsome server, and Walter told then how freaked out he was by them talking about the cute boy, the giggles were out of control!

Happy 10th Birthday, my sweet girls. I loved you before I ever knew you. You made me a mommy and because of that I am a better person. Loving you is like having my heart live outside of my body and I am privledged to have had God choose me to help you grow. I cannot promise many things, but I can promise that I will always love you and in me you will always have someone who will not judge you, will listen and value what you have to say and how you were made, and will hold you up when you feel you may start to fall. You have the free will and the mind and heart and strong bodies to do anything and be anything in this world. I can't wait to see what year 10 is like!

Friday, July 22, 2011

Liz is sick. There, I said it

{This photo was taken on Liz's birthday.... she was excited to open a gift and find a cute apron, hot mitts and a new cookbook. Liz loves to cook!}

I haven't wanted to blog lately, but I need to catch up because I have fun and adorable photos from the girls' birthday and trip to Disneyland. For today though, I will just update on our appointment for Liz yesterday. I am frustrated and nervous and, for the first time in a long time, I am officially concerned about her. I have definitely had times of being worried about her, but it has been years since I have been so concerned. It is an awful feeling and matches how helpless I have been feeling lately. I have said it before and I will say it again- I would walk a thousand miles, carrying her, if I had to in order to get to a place that could make her better. To sit and wait....and wait and wait, leaves me powerless.

You all know she has had the CDifficile infection since April, when she was hospitalized. She has been on antibiotics since April. She had a course of Flagyl that she finished right about the time we realized that her body was having an allergic reaction to the drug. Even though she has taken Flagyl in the past, last year in fact, for CDifff, and hasn't had a reaction before, this last course was enough to start the reaction and she is now not to ever take the drug again. After Flagyl, she has been on the hard-core drug called Vancomycin (Vanco.). She's had 3 courses of it....3 weeks each time. She finished her last 21 day course yesterday....and still, she has CDiff. This infection just won't die. Remember, we all have CDiff in our gut, but some get the CDIff toxin/infection once your Flora balance is off either after taking an antibiotic (meds kill the bad stuff, but also kill good stuff-the flora- in your gut that keeps things like CDiff from growing out of control and becoming a toxin) or from contact or a low immunity/being immunosupressed. 80% of people who get CDiff take (usually) Flagyl and are fine. 20% of people have a recurrence later in life and a teeny, tiny % of people have a third occurrence. Elizabeth has had this 3 other times, and is very unique in that she has been unable to fight the infection this time. 4 months of CDiff is pretty unheard of.

Anyway, we met with the Infectious Disease doctor yesterday and her GI doc was able to "attend" the appointment on the speaker phone. Both agree that because she is still having bleeding and has tummy pain and nausea, the infection is still active (duh!). They want her to do an additional 3 weeks (!!!!) of Vancomycin using a tapering system. Instead of taking the drug 4 times a day as she has been, she'll do twice a day for a week, then once a day for a week, then every other day for a week.
Vanco is scary and I asked the doctors if they are concerned she has been on the drug for so long....blatantly, they both said yes. She is at risk for developing VRE, a Superbug ironically caused by taking the is nasty and serious and is resistant to many drugs. It makes me sick just thinking about it. She must be on an antibiotic though to treat the CDiff and the only other drugs that treat CDiff (there aren't many!) haven't been tested on children and the doctors think that the risks of using one of the untested drugs outweigh the risk of VRE right now. It's like a game of chance in some way. I am happy that the Infectious Disease doctor we have been seeing took Liz's case to the rest of the team, so there have been many contributing opinions, data and options.

Liz has had a rough, rough week. She is exhausted. I have never seen her so tired. This is caused by three things- she is fighting a bad infection, she isn't taking in many calories, and she is anemic (because of losing blood in her stool and not eating). She needs to start on iron, but unless her fatigue or coloring gets worse, we'll wait two weeks to have her start on iron. Iron can upset the stomach and the docs need to be able to tell if her pain is getting better, not masked by pain caused by iron. In 2 weeks, she'll have a special set of labs to test her ferratin levels and also how her red blood cells are functioning.

She also started taking Periactin. This is a drug used to treat allergic reactions, but one of the side effects is an increase in appetite, which is why it has been prescribed as a stinulant for weight gain. We are all hoping she will at least become more hungry and start eating more so she can gain weight.
The last week has been her worst as far as intake of food and fluids. She either refuses to eat because she isn't hungry, gets nauseous at the sight or smell of food, or she gets a sudden urge for a particular food and once in front of her takes a bite ot two and says she is finished. So frustrating! The doctors did give her a stern warning about at least drinking or else being admitted and she has been trying to do that.

She's been on Zofran for the last 3 days, as she's had bouts of dry heaving. Zofran, and the Periactin both cause drowsiness, so combined with her anemia, she is a zombie. I am so relieved it is summer because she wouldn't be able to function well in school.
If, in three weeks the CDiff hasn't cleared, or if she continues bleeding (rectally or in stool), we will be forced to go to another drug and further treatment. Se tested positive for blood tonight, which makes my stomach churn. Also, if her abdominal pain and nausea persist (this has gotten worse rather than better over the last 2 weeks) and if she isn't taking in much, she will have a series of pictures taken of her small intestine, ect by doing the pill camera study (swallowing a pill that contains a camera, which takes pictures as it makes its way throu the body. It can see an area that is unable to be seen via endoscopy or colonoscopy.

So, that's it... Elizabeth is pretty sick. There, I said it. I am concerned. Her doctors are concerned and calling ME often enough that I know they feel the need to manage her closely (which they have all said). And we all just need this to be over. To say the next couple weeks are important is an understatement. We need the Vanco to finally work. We need Elizabeth to not develop the VRE infection. We need her to at least drink more and to take on more calories. We need Liz's counts to come up. We need to have her well and move on from this, once and for all. We need normalcy. We need many things.

Tuesday, July 12, 2011


Quick update: Elizabeth continues to have stomach pain, nausea and bleeding with her stools. Her GI doc is on vacation this week, so the Infectious Diseases doctor is calling the shots. He is not as worried about the continued bleeding as GI is. He says it is to be expected given how bad her infection and Colitis is. I is not normal to expect to see blood. Still, as long as it isn't getting worse, he says we must watch her, but not worry too much. Mmmmkay. She looks awful and has been so, so tired. I took her in for counts yesterday and her pediatrician seemed excited to say that Liz's heartrate was not too fast. I didn't know that was even an issue, but maybe given how she looked, she was exepecting it. Anyway, she had blood drawn to check her counts and wonderfully, they actually look pretty good which is huge! I worried she was anemic or her plateltes were low, given how she appears, but they were not. Great news!
We have been staying home for the past week, as Liz needs to be close to a bathroom and she is tired. Kaitlin and Jackson have been amazing! They are patient and have been having fun just playing at home. Elizabeth is both tired and irritated at this point. She has started to snap at everyone and is becoming angry and mean towards me. Poor thing. I am back to trying to manage letting her voice her anger and agitation while still keeping her from being disrespectful and rude. It is a hard balancing act. She has been sick with this since April (forget the last year and a half of the other stuff or the last 10 of her stomach issues) and that is too long to feel ill. I would be tired and angry, too.

So, we are checking in with the doctors daily and waiting and praying that the antibiotic finally works. Her Infectious Diseases doc did tell me yesterday that once she finishes this 21 day course of Vanco. she is on now, he will add another 2 weeks of treatment and taper her off of the medication, hoping this will finally cure her CDiff. She'll also start another drug next week in addition to the Vanco, to be taken for 30 days. We are praying that in addition to the Cdifficile finally being cured, she will not develop VRE, a drug resistant infection (a Super Bug), ironically cause by being on an antibiotic. Noone wants her to be on the Vancomycin for so long because of the risk for VRE but the Infectious Diseases team feels there is no choice at this point. It makes me so nervous because she's now been on Vanco for a combined 30 days, with another 24 days to go.

She'll get through this, I know. I worry, but I know she will. I have noticed though that she has started telling people, when asked, that she "kinda feels better" instead of "better!" as she usually does. Keep praying!

Friday, July 8, 2011

The best medicine

{We look alot a like. But we are not alike.
I'm loud, she's quiet,
I'm serious, she's a riot.
We're totally, totally, different, different
identical twins.
I am not a duplicate, I am not a clone,
a copy cat, a second scoop on an ice cream cone.
Friends, pals, partners, chums
but we're marching to different drums.}
This is a song, sung by the Olsen twins when they were little, that we would sing to the girls when they were young.

Kaitlin is Elizabeth's best medicine. I have always been in awe of twinship as I have a front row seat to watching the bond of twins. Still, I am not a twin mom who dresses the girls alike, refers to them as "the twins" or even encourages them to be extra close. I believe that though they are identical twins who share the same DNA, they are their own people who deserve to be treated as individuals.
I cannot deny the natural, animal-like instinct that is being a twin, though. I have written how the girls have pushed their beds together to sleep close to each other and how they even touch eachother's hands or arms without ever noticing, it seems. I think it is most striking because if you know Elizabeth and Kaitlin, you are aware of how incredibly different the girls are. So different in fact, I would bet that they would not be friends if they were not sisters.
In the last month, it is undeniable to watch how the girls have been literally holding each other up. They don't care to have play dates and Kate even turned down a trip to the barn to see the horse this week in order to be with Liz. They are always together and sit close (even in the same chair) and talk in whispers. It is as though they have come alongside eachother during this difficult time for Liz; supporting Liz while she is sick, and Kate while she is sad and frustrated, in a way only a twin could.

It makes me teary to even think about because it is amazingly special and I am so grateful it exists. Before their were words, the girls would stop crying and be soothed once their twin was placed next to them in the bassinet (you hear this often and in fact, it is a technique used in NICU's). 10 years later, the girls still find comfort in being close to one another, even without words, holding their sister up in a way only they can.

Sunday, July 3, 2011

The Tiki Room

This morning started out with the sad news that Elizabeth would not be going home for a few days. Elizabeth was crushed and cried for about 3 hours straight at the thought of enduring a colonoscopy, remaining hospitalized, missing 4th of July fun and having our scheduled trip to Boston and Maine jeopardized. BUT, the day turned out to be great and I think we both feel energized and ready to face the remainder of her hospitalization and then her recovery at home. We made her room fun, got to spend time with Megan and Kaitlin, had a visit and hugs from our friend (and brave Alyssa's mommy), Juliette; had an unexpected gift dropped off by a new (kind!) friend, spent hours with our sweet Gooches, I got to run home for a shower and to see Jackson for the first time in 3 days, and Liz got a new DVD player. Plus, Liz has the same fun nurse she's had the last three nights and she is great with her. A good day, right?!

Elizabeth's room got a little hula makeover. I asked Megan to please pick something up to brighten this boring hospital space, and she delivered! Elizabeth perked up and thought the decorations were so fun, right down to the blow up flamingo that Kaitlin named Lola.

I don't know how to write the rest of this post without crying. I haven't let myself cry in the last few days, determined to hold it together considering I lost my damn mind in emotion on Friday morning. Still, seeing my Holly and the rest of the Gooch fam and then watching them walk away, just about broke me down. Their short visit to California was to include time spent with us and of course those plans changed with Elizabeth's hospitalization. This afternoon though, our day was totally brightened by a 3 hour visit. This morning, I warned Liz's nurse that we would be having guests. Miller Children's Hospital fully supports the Family Centered Care movement and as long as it isn't disruptive to the patients' medical care, whoever is important to the patient is allowed to visit. Let me tell you, this visit was important! Our hearts are filled and Liz has been smiling since this afternoon. Aunt Holly is naughty and encouraged the kids to raise the hospital bed to its highest level (which is super high) and give eachother bed "rides." Little Gavin bathed the pink flamingo in the sink, the kids were loud with giggles, and balloons were everywhere. Total, fun, chaos!
Holly and I have held eachother up for the past year and to have her in the same room was a gift. Having a best friend live so far away is difficult and how I wish we could just have a fun visit, away from this hospital while she is in town. Hugging her goodbye made my heart ache.
We love you Gooch family.

Liz and, wait for it...cancer-free Spence!!! They just get eachother and care or eachother so much.

What a crew! So happy to be in the same town; in the same space.

Sweet Belle and Liz

Saturday, July 2, 2011

24-36...she's done!

It is almost 9:00pm and Elizabeth just asked the nurse to call her doctor so that she can be discharged. I kid you not. She said that he (the doc) said she would be here 24-36 hours and that time is passing and she wants to go. I love this kid!
In about an hour, she will realize that she is not going home and she will have tears and anger and she will tell me what she's been telling me all day- that she is NOT sick. Never mind the fact that she has had bloody stool 12 times today and also had times of passing only blood alone. She is exhausted and her tummy hurts...but she is not sick!

She is correct, we were told that she would most likely be here only 24-36 hours in order to get her hydrated, watch her platelets, control her pain and get the antibiotics started in-house under the care of the physicians. We knew that she would go home not cured of the infection and have to finish the course of antibiotics at home. This morning when her GI doc saw her, she'd had a good night and had one episode of testing positive for blood, but then had had no more. An hour after he left, she started passing blood for the remainder of the day.
She will have labs drawn first thing in the morning and her stool is being sent to the lab again. There is talk of having a colonoscopy done and also a scan to see if fluid that was noted in her pelvis (on a Catscan) when we were here in April has cleared. I don't know if those things will be done now or be done as an outpatient. The Infectious Disease doctor wanted the colonoscopy and was going to speak to the Gastro. doc.
Liz is starting to remark about seeing blood every time she uses the bathroom and I have to admit it makes my stomach turn, too. I just keep reminding myself that it is the progression of the infection to now include Colitis and that she will be fine.
She has been asking me to promise that we will be home by Monday. I have told her over and over that I cannot promise that, but I am really thinking we will be home by then. Praying we will is more like it.

We are also very, very sad that tomorrow's plans have gone to crap- literally! The Gooch family is in town from Utah and tomorrow was our day to spend with them. I could cry just knowing how much my kids have been waiting for this day and how much I need to see my friend Holly. It has been a year since we saw each other and we have been counting the months and days to watch the kids just play together. The kids and I have also been so anxious to get to see Spencer, healthy and cancer-free! Elizabeth keeps saying "but what about the Gooches?!"
We are also scheduled to leave for Maine on Friday, but have decided to just play it by ear and not rush things. If it works out, great! But, we will go when Liz is feeling well enough to enjoy the trip; if that isn't Friday, then so be it.

Some moms (and grandmothers- hi Cindy!) I know use a term..."hospital time." Hospital time is it's own set of rules, schedules and loss of control. Nothing happens when it is scheduled; things get done whenever they get done, not when you think they will or should; and you have to practice patience. I am trying to just go with hospital time and focus on knowing we'll get out of here soon and will put this behind us.

Praying Elizabeth can get some sleep....and that I will have more than the hour I got last night. Thank you for caring about my Liz.

Friday, July 1, 2011

The Ritz

Elizabeth is finally resting, so I will make this brief, as I want to rest while she is...
Liz was admitted today after she started bleeding rectally, a sure sign that her CDifficile infection has caused Colitis. Hopefully, she will only be here a short time to get things under control, hydrate her through iv and manage her pain and nausea at a higher level. She will then be able to finish treatment at home. This is the plan, at least. Last time, a quick visit turned into a 10 day stay, but she has told her doctors that she has a plane to catch (next Friday) and they know she wants out, like, yesterday. Besides the obvious necessity to be here, an upside is that all er docs are in one place and so hopefully Infectious Diseases, Hem/onc and Gastro. can come to a meeting of the minds and get an even better plan together for getting this awful 3 1/2 month long infection under control and also find a way to determine why she can't kick it (the thinking seems to be that her bone marrow and white cells issues have much to do with it).
I can report that her counts look good tonight. This is a huge praise, as her platelets have been very low at times and given the bleeding I was so worried that would be the case. She fell asleep crying because of nausea and a horrible head ache, but I am hoping that with the iv, she will get re hydrated and feel a little better with that alone. She was so brave as she was stuck 7 times in failed attempts to start a line and then faced an uncomfortable and very awkward vaginal exam for the first time by a male doctor. She is amazing.
I will leave with this, as I want to journal it to be able to read about later, though I doubt I will ever forget it. As much as her sass can drive me crazy and as hard as it is to keep control of so that sass doesn't turn to disrespect, she made me laugh today.... for as brave and strong and loving of a girl she is, Liz is a princess through and through:
Liz has been in the newer part of the hospital for as long as she can remember. Better painted and decorated with views of a garden and the nurses she knows, Miller West is where she is most comfortable and yes, it is "better". Today she was admitted to the Core (the older part of the hospital). Upon getting to her room she started crying saying she was scared of "this new place". The tears quickly gave way to eye rolls and glares as she said "this place has ugly wall paper and the bed is crooked. There is no garden to see my butterflies and it smells. I want to be moved. I need to be moved!" And so, I let the charge nurse know of Miss Noel's request. We'll see what happens. Her teacher put it well when she commented "You can take the girl out of the Ritz but you can't take the Ritz out of the girl" So true.
I love my precious, pooping, princess-like Ritzy girl.

I hate....

I hate the hospital. I need the hospital. I hate the hospital. I need the hospital. I hate the hospital. I hate the infection CDifficile, and now, Colitis, that has taken over my poor baby's gut for the last 3 1/2 months. I hate that we are once again here, with Elizabeth admitted to the hospital. I hope you know how many things I am grateful for, but I am feeling such frustration at this point, the things I hate are on my mind. I hate that I am using the word hate. I hate that Liz just asked for Zofran because she feels so nauseous. I hate that as I Skyped with Kaitlin and Jack tonight, Kate was fighting back tears and Jackson was crying so hard his body shook because he wanted me home. I hate that Jackson even knows the word platelets and when he sees a bag packed, asks if Liz is going to the hospital again. I hate what years of hospital stays, surgeries, medical bills and anxiety does to a marriage. I hate that Elizabeth was stuck 7 times in an effort to start an iv, yet she didn't move or cry or protest because this is all too familiar for her. I hate that she bleeds and it doesn't make her nervous at all. I hate that I would walk a million miles with her in my arms if I had to just to find the one end-all treatment or doctor who would help her and assure no more of this, but I don't know of that place.
I know God is the place for comfort and ultimate healing. I know the scriptures that promise this and that I get comfort from and I know He does not waste pain. I know all of this and I love so many things. Still, I hate seeing my Liz suffer. I want to scream out that we have learned our lessons, Lord! We have seen mercy and we have endured and persevered and learned to trust in Him much more than we ever would have had Liz not been sick. We are stronger, we are more patient, we are more compassionate...we are all of these things and we have learned our lesson. But, before Liz was ever mine, she was His, made in His image and she would not suffer in vain. There is a purpose for this, still. And no matter how much I hate much of this, I will not forget what I know is true.