The past few days have been consumed with Kate's volleyball. Thanks to the help of family, I have been able to attend all of her games over the past two days. I am always so happy when I am at Kate's tournaments- watching her play and interact with her friends. She deserves normalcy and I am grateful I have been able to give her some mommy-support. I was up for hours in the middle of the night with Liz as she cried because she felt sick. She has a fever, super site throat and congestion/ runny nose. Such a bummer. Actually, I just laughed out loud at that because it is such an understatement. It is way more than a bummer... it is scary. Her colds so easily turn into a sinus infection or pneumonia and those both require antibiotics, which for her means the onset of CDifficile. When Liz is sick with a simple cold, the Pediatrician and Infectious Disease doctor must be contacted, and I am on edge waiting to see if it will pass instead of turning into much more. Luckily she has appointments already scheduled with Hem/Onc and Pulmonary/immunology on Monday, so those docs can take a look at her. Please pray that Liz can get over this virus quickly and that the morning brings some relief for her.

Update

Liz did well in the OR and we got home around 5:00pm. For some reason, her BMA and biopsy site is higher on her back than normal and in the middle rather than right over a hip as she's had before. Being in the middle made it difficult for her to get comfortable and she has had much more pain than she had with her other marrow aspirations. I finally called the pediatrician last night and asked if I could give her codeine. The poor kid is kind of a mess of holes. Both arms from the PICC, her back from the bone marrow procedures, and even the simple IV bandage.... which is nothing really, but the fact that she had To have an IV threw her over the edge of tolerance yesterday. When you have a PICC, medications and blood draws are done through it, so you don't need to get poked and have IV's. But because her new PICC line is threaded through the same major vein that her old line was in, she had to have an IV placed yesterday so that her old PICC could be pulled. Confusing? In short, she was super angry and felt lied to when the team told her she'd need an IV for yesterday's OR trip. Liz is just such a hard stick and starting a line is not easy due to her veins. Luckily, nurse Shannon was on and somehow she always gets Liz on the first or second try. Anyway, it was a long night of pain for our brave, brave girl and now it will be a long, long four days of waiting for us to find out the results of the biopsy and what her marrow looks like. Waiting is so difficult and though I know what's done is done, and worrying won't change what we will hear, wondering is something I cannot control. Please continue to pray for our Elizabeth. -unable to view to edit-

Liz will go to OR procedure room today at 2:00. She'll have her PICC line removed and replaced and her fourth bone narrow aspiration and biopsy. Yesterday, the Hematology/Oncology team decided to do the bone marrow procedures now rather than in June as planned because her counts continue to decline without any recovery. Please pray for our brave, strong Liz.

So....

I am so frustrated about so any things. I have realized how any times I am using the word "so" when writing. It just comes out and expresses better than "very" or even "totally". As I write this, I am smiling because I remember when Liz went through a time in her writing for school journal assignments when she would write so, so, so, so, so, so, so...... before describing something or a feeling. That smarty pants figured she could take up half a paragraph of just "so" and get closer towards her assigned number of pages. And, it was easier than using other descriptive words.

Yesterday, Liz was put on the books for the OR to have her PICC changed tomorrow. I have been told it needs to be done, but goodness, I do not want to put her through another procedure. So, I asked for the Clinical Nurse Specialist to take a look at the arm "one more time" to confirm that it should be done. This morning Liz and I headed to the hospital to have Linda look at her. She confirmed that removing this PICC and placing another is the right choice. Sigh.

Liz's primary Pediatrician is on vacation this week (how dare she! : ) ), but she talked to all the other docs in the group and updated them on Liz, and the on-call doctor has called twice since Friday to check on her. This morning, he called to tell me the results of her labs from yesterday. It is so frustrating to hear that her counts have gone down more since last week; they have been declining for five weeks now. Of course, Liz has had low counts over the past two years, we know that. But, her counts usually roller-coaster....they go down, but come back up, down, up. Having all cell lines this low for five weeks and declining is new and concerning. It is also super frustrating because there was hope that her nutritional status getting better would help her marrow recover, which would lead to better cell counts (because cells are made in the marrow).
I am waiting to hear if the Hem/Once team wants to do anything in the OR tomorrow, in light of hearing how her counts are just going down.

So, so, so, so, so, so sad and frustrated. So, so, so, so, so over it.

Happy

Feeling happy and so lucky today, which I wouldn't expect to feel because today was not extraordinary- I am pretty exhausted after a week of Liz waking every night, and this day included a long and painful dental appointment for me (I seriously had to do some lamaze breathing in that chair!). But, I do feel waves of such happiness and joy, and it is during times like these when I know I am feeling His love and I may very well be being prayed for.
 Things that have made me smile today-

* At this very moment, I am holding Miss Harper. Her newborn-ness is just out of control cute and I could hold her for hours!

* I am holding Harper because my sister is out on a date with her husband- this makes me SO happy. She has taken care of so much for me over the past few months and I appreciate her. I will never be able to thank her enough and I haven't been able to help her with Harper or the other two girls during Harper's first weeks as I would have liked to. I could watch her girls every week for life, and it still wouldn't be enough to show her my appreciation.

* Elizabeth gained about 2 lbs this week!! Exactly what she needs. Hooray!

* Jackson said "yo-yo" again in his perfectly imperfect way. It makes me giggle every time I hear it. And then he asked Kate where is "Roger talkie" was...he means walkie-talkie. I asked him to repeat himself three times just so I could hear his cuteness!

* Walter has been back at work for 5 days, and tomorrow he is off. I am looking forward to having him home during the day. I miss that guy!

* I have seriously beautiful kids. Seriously. Not just their outside beauty- but their inside is what gets me most. They can be sassy and even naughty at times (mostly to each other), but they are kind and loving and super compassionate and I adore them.

* Tonight we had our last scheduled dinner drop-off. It has been such a blessing to have meals brought to us over the past two weeks. I haven't had to think or spend time on dinner, which has been a nice break and allowed me time to spend with the kids, just being together. And, the meals have been an extra reminder of how kind people are, especially when they know another is hurting. Awesome.

* I am a stay home mom, not originally by choice. We cannot take lavish trips or buy all the diamonds I Liz would like, but my goodness, we have beautiful cars and a nice home and I am totally grateful for these things!

* I have my health and Walter, Kate and Jackson are healthy. That is something to smile about!!

{Liz has an OR slot at 2:00 on Wednesday to have the PICC removed and a new one placed. I am also anxious to hear her lab results from today... I would be very happy and a bit less anxious if her counts have gone up, even a little, because they have only been declining for the past five weeks. I will hear tomorrow.}

Sidelines

Today I was able to spend a lot of alone time with my Kate. We were on the freeway by 6:00am, heading to Anaheim for her day-long volleyball tournament....just the two of us. I could not have been more happy than I was, just being able to focus on her, watch her have fun with her teammates, and show her how important she is to me. And I was able to sit; there is so much sitting at these tourneys and it feels so good!

Poor Kate ended up injuring her ankle. After her first game, she was limping and didn't know how she'd injured it, but it was definitely swollen and needed to be taped. During her second game, she sprung off her foot to go for a ball and she ended up in tears and asked the coach to have someone sub-in. Kate doesn't complain easily (except when she has a cold, and then she is as bad as a man with her sniffles and complaints : ) ), and she absolutely hates attention being on her. So for her her to draw attention to herself by asking the coach to take her out, I knew she was hurting.
As she sat on the bench, we could all see her sobbing hard enough to make her shoulders rise as she cried. Her coach knelt next to her on and off, and it took everything not to go to her. After about 15 minutes, I did end up getting out of the bleachers, and the coach asked me to take her to the trainer for ice.
She iced it, was able to stay off the foot for an hour, and then we bought a brace and she was back on the court playing. "Just like Uncle Travis does", she said.

I have to tell you that during those minutes, watching her sit alone on the bench in pain and crying, I had thoughts of Elizabeth. I feel so helpless in regards to Elizabeth, and daily I am watching her and worrying about her; I am with her and I have access to medical care, and still- I am on the sidelines, unable to truly help her. It is the worst feeling as a mom.

Elizabeth's arm is still painful and she has some bruising, so we are going to go ahead and pull the PICC line from her right arm and place a new one in her left. I hate sending her to the OR again, and I have been trying to wait it out and hope her pain would resolve, but it is time. The doctors worry about the possibility that she is developing blood clots, and it is not smart to wait to pull the line.
Tomorrow is Monday, which means that the home health nurse will come to draw labs, change Liz's dressing, and do a weekly weight check. I have chosen not to weigh Liz during the week, because I will just make myself crazy. So, tomorrow is her weekly reveal, and I am anxious to see how much she has gained.

Off subject, but something that has been weighing on my mind more than I can express-
To those of you who have brought us a meal, sent a card, left a gift, or prayed for us....
THANK YOU. I am ashamed at how long it is taking me to get notes written, and I want you to know that even if I haven't written or called, we are so grateful for each act of kindness.

Thank you for caring about our Elizabeth. Truly.

Update

I literally remember taking this photo! Katie is standing on a brick and daring herself to "jump" into
their little inflatable pool. Look at Kate's face and hand- "whaaaat, Mommy?" And Liz looks as though she is
holding onto Kate to keep her from jumping, but I know she was trying to push her off.
Every Summer day, from about the time the girls were two,
I would climb into bed and say "I can't believe we made another day without a trip to the ER!" Kate was just
so active and had no real fears, and I worried daily that she would get hurt or Liz would get hurt while trying to follow whatever trick or trouble Kate was up to. Amazingly, that ER trip for an injury didn't come until Spring Break of their first grade year, when Kate fell from a tiny toddler-sized slide and broke her arm in such a way that it was in the shape of an "S" when she came crying to me that she'd fallen. And in those bikinis...I just want to eat them up!



I love looking at this picture because I can't get over how Kate in her cap, and Liz in her tiara, reflects their
personalities then.....and how they have remained over the past ten years. For those who dispute that there is a God and claim that we are all just subjects of Science, I say look at my twins.
Same DNA, identical, same environment.....and yet they were born with their own personalities.

                         Are you kidding me? How cute were are my girls? I am so glad I decided to look at old photos tonight; how much joy Elizabeth Claire and Kaitlin Alyssa have given me.....and how dang cute they have always been, inside and out.
******************************************************************************************
Last night, Walter was filling out paperwork for a Physical. He was asked to report on the health of family members, and when it came to Liz, he asked "Is Elizabeth's health good, fair or poor?"
I seriously just looked at him, probably with the same expression Liz's doctors have given me when I have asked them if she is considered by them to be sick.
It sounds like craziness, I know, but on the other hand, I think it is kind of great that we don't live thinking of her that way. This is what is happening, but not who she is. As I write this, I realize I sound like I am maybe in a little bit of denial, but it is true that though she is sick, we see her more as "normal" than sick. I am just digging deeper into sounding crazy, so I will just say that I answered him with "Ummm, she is 'poor'"
Do they have an option for "Poor....but just for now"? Because they should.

Today Liz saw GI. I like this doctor because he doesn't like to be too aggressive, but believes in addressing issues; he believes in making a plan and a goal when starting a medication, treatment or therapy; and he always speaks to Elizabeth directly.
So, his plan is that she will do a month more on TPN and Lipids, and will be weaned off. If during the time they are tapering down her TPN/Lipid "feeds" she doesn't maintain or gain weight, they will put in a GTube (a tube inserted thru the abdomen that we would feed her thru). She cannot have a PICC line forever, and it is acting as a band aid right now as we try to get her to gain weight and her nutritional status better.
Once her Prealbumin, Albumin and weight is better, if the bone marrow aspiration shows abnormal marrow again, we will know that her nutrition has nothing to do with potentially being a cause for the hypocellularity of the marrow.
Because the GI team likes the dietitian in the Cystic Fibrosis clinic, and because CF patients need to have a high caloric diet, her GI has consulted with the CF dietitian about Elizabeth. We are going to follow some of their guidelines in terms of Liz's diet and hopefully that will also help her gain weight.
Her PICC line arm is still a bit sore and she has some bruising now. If it is not better by Monday, they will pull that PICC and put in a new one early next week. She should not be having pain, and though it could be just nerves, her pain is pinpointed to the area along the line, and the doctors always worry about infection or blood clots.

There is more, but that is enough for now. We are praying that her weight and Albumin increase, her blood counts get better (we see Hem/Onc next week) and her PICC doesn't have to be pulled and replaced.

My date with my Kate

Cutie! She doesn't know how adorable she is...which just makes her more adorable!



Kate found a "truffula tree"!! *Think Lorax : )

 Tonight, I took Kate out on a date. She is so busy with school and volleyball, I feel like she is being dropped off and picked up from place to place, and eating in between.... with not much time to connect. Aside from the issue of time, Kate is a bit more difficult for me to connect with because her personality is different than mine, so it takes a little effort to get her attention.
My sweet, sweet girl likes her time by herself (though she wants to know where each member with the family is at all times); she only needs a few good friends rather than a bunch of giggling girls in her life; she doesn't feel the need to use many words or express herself, but when she does it is almost always profound or thought-out; she is loyal and believes in fairness and justice; and she is full of love to give but must be in the mood for hugs or bonding. I basically just described Walter! : )

Anyway, I miss my Kate, so I knew we needed alone time. I drove to Sweet Embellishments, a dessert place in our neighborhood that has yummy cupcakes and fun board games out for customers to play, if they'd like. We got there at 6:58pm, and they close at 7:00pm! What?!
We ended up shopping for a, well, I can't bring myself to type the word yet alone embarrass her with my sharing it. It rhymes with straw. Eeekkk! Can you believe it?! I seriously had tears in my eyes.
My goodness, when I had the twins, those first months and years were nothing short of a marathon of exhaustion, vomit, diapers, tears, toys everywhere, double-everything, exhaustion, messes, exhaustion. I would go through my days just hoping that the time would pass and my two babies would grow. Now, I am mourning the days and milestones that come and go so quickly.
How in the world can my baby girl need a straw?!
Mmmm, how I love my Kate.
*Kate loves this song.                                            

{An update on Elizabeth- oh man, we are in some trouble. Her labs from Monday show that her counts are even lower than the 3 week low she's had. Sigh. This includes white count, red cell count, hemoglobin, hematocrit, absolute neutrohpil count.... just a lot of important stuff!
Most upsetting today, though, was learning that her Prealbumin (a hepatic protein that is used to assess the severity of illness resulting from malnutrition in patients who are critically ill or suffer from chronic disease) is even lower than when we left the hospital. It should be higher than it was then because TPN and Lipids help her nutritional status, so knowing that it hasn't gotten into normal range and is in fact even lower than it was when it was starting to climb during her hospitalization, makes me feel sick. Tomorrow we see her GI to talk about what we're going to do now.
She seems better today in terms of the nausea and headache that she had after her transfusion, but she has been extra tired and shaky. She got exhausted just getting dressed today....most likely because she is anemic and still not getting enough fluids in.
Hoping for a better day tomorrow. Please continue to pray; I cannot express enough how much we need prayer for her body to get stronger and for her counts to go up.

Broken

Planning is something that I need; it is just in my nature to plan, plan, plan. I have written before about how this whole experience with Elizabeth has been teaching me about being flexible and how to accept that plans are often broken. Tough stuff for a personality like mine.

I have been anxious to get to the Spa for a massage! My mom gave me a certificate for my birthday, back in October, and it has been burning a hole in my...head. Just knowing I have had it, but not had the time to use it has made me crazy. After my three week stay at the hospital with Liz, sleeping on a chair bed, my back and neck are a mess. I scheduled an appointment for a massage for today and was looking forward to it..... but had to cancel when my dentist's office called and offered me a cancellation spot. Blah! I have had to cancel my dental appointment for months and I really have issues going on, so I had to take the dentist over the Spa.

I rescheduled the massage for their only opening tomorrow that will work for me...and now Liz has an elevated temp. If I miss that massage because I am at the ER or doctor's office with Elizabeth, I will be heart broken...alright, that is a bit dramatic, but I will be irritated. Not to joke- we are really praying over here that her temp goes down, as "100.4, out the door" is a new thing we have to live by while she has the PICC line, and I really don't want to go the ER or have my girl feel sick.

Walter and I finally got around to a dinner out, after days and days of broken plans. It was so nice to be able to sit and talk. Even though we were seated in a booth in the bar, and the games were on, we both put our phones away and turned away from the tv's and we actually talked about things other than the kids or any of the brokenness that seems to be happening around us right now. Happy to reconnect.
Speaking of broken......

Some couples finish off a date with a walk on the pier, or a movie. Tonight, Walter started breaking this toilet so that he could fit it into the trash can (in our town, you can only have the trash that is in the can, picked up). I went outside to talk to him, and we ended up taking turns slamming this thing with a sledge hammer. It felt good! Jackson stood at the door watching us like we were crazy people as we laughed and hit away until it was a broken-down pile of porcelain.


And, an update on Liz.... she gained 1.3lbs this week!! Yahoo, the TPN and Lipids are working!! She had labs drawn and we'll get those results tomorrow. If her red cells, hct and hgb are as low as they have been the last few weeks, we'll have to do something, but I am trying to be positive.

Irish

My mom went to Ireland a week ago and brought back shirts for our Irish babes.



Every year we celebrate St. Patrick's Day with a traditional meal....




.....with a little green added. Taylor was not impressed by the green potatoes.




Dessert! Thank you for the cookies, Yvonne.




The kids were excited to see the cake that Megan made. They had no idea what was inside....




A rainbow! I swear, Meg does it all. So much fun.




Kenzie enjoyed the cake....



...and the super cute cookie treats that my girlfriend Andrea made. Seriously, some of you ladies are so creative.



Harper puts the "Whi" in Whiasian, with her Irish blood.




Traditions make a family strong. Such a great day together as a family, and tonight celebrating.



...and now, a fire going while listening to the rain. Does it get much better than this?

     Liz is hanging in. Last night was rough again, but today she was well enough to go a movie and keep with our plans for family to come over tonight. We would love to be able to attend church tomorrow, so I am praying she is well enough.
Monday will bring it's own conversations and more labs, but for now, we are relishing in a great weekend.

Moms

When the girls were just about 18 months old, I was told about a group called MOMS (Making Our Mothering Significant). I could have kissed the woman who shared news of the group with me, as I was a young mom who's friends did not have children, so I felt pretty isolated in my stay-home-mommy-ness. Joining MOMS was one of the best things I have ever done for myself. In fact, when I learn of a first time mom, I always offer-up the advice to find a mom's group.

For me, MOMS brought sanity, a sense of community, advice, support and friendship for myself and my kids. Not every mom I have come in contact with at MOMS has become a friend, and some are casual friends or acquaintances.
Others, though,  are lifetime sister friends. We have laughed over being spit up on in the most awkward of circumstances. We've cried together at news of a sick child or parent. We've laughed over our many learning moments as mothers - mistakes that thankfully our children won't remember. We have encouraged one another in our marriages. We've watched each other's children while one of us has been in labor or been sick. We have attended the funeral of one of our parents.  We've held each other up when one of us is too exhausted to stand alone.We've brought meals to each other's families after the birth of a child, or loss of a baby. We love each other's children and husbands simply because we love each other. We've brought pink roses to each other after news that a mom of boys was not pregnant with a girl, but instead, another baby boy.
And our children- oh, don't get me started on them. To watch our kids grow up and to remember how each precious one looked in my friends' arms as infants, and how they looked as toddlers playing together.... sweet, sweet memories.

I cannot remember the reason for every round of laughter or every good cry we've had, but I will always remember the way these women, these friends, have made me feel - supported, cared for, and as though I was not alone in motherhood.

A few of these girlfriends have had the nerve to move away from the group (!!!) and each separation felt like a family member leaving. Wonderfully, though, the distance may be great, but time and miles do not change anything- we can pick up where we left off.

Thursday, one of the "movers" was in town, and a group of us went to lunch. I could not have been more happy as we sat at a table for hours (as our kids played) and talked. Real, vulnerable, hysterical, loving, meaningful and silly- all at the same time- we talked.

What brought us together was motherhood (the good, the bad, the ugly, the beauty of motherhood!!)   and what keeps us friends is how we are as women- as girlfriends.
Goodness, I am grateful for friendship and girlfriends!

Water

You never think you will be able to weather a storm, until the storm hits. And when it does, well, you have no choice but to hold on and take it- the waves that swell over and over, the gasps of air that come when there is a break in the clouds, the chill that overtakes your body as you grow hard against the hits that come. If you were presented ahead of time with all that a storm holds, you would absolutely declare yourself unfit for making it through.

And then, it comes. Angry, fast, without care, lashing, over powering, secluding, betraying and vicious. It comes all at once and yet building at the same time.... it comes, and though you think you will sink, you soon find out that though you feel as though you are drowning, you are able to tread water or at the very least float. You are able to take the waves that come.

Many times I have had the image of my children in the pool as they learned to swim. The first thing their instructor taught them was to jump into the water and be able to find the wall of the pool. If they were too far from the wall, then they were taught to flip onto their back and float while they caught their breath and calmed themselves enough to find the wall. So often during this storm, I have not been able to find the wall and have had to just float.

Over the past few months, especially, there have been things that are helping me keep my head above water.......

Strangers. People I have never met have touched our days in unexpected ways and it has been touching to be reminded of the goodness of people. I have more than a few examples of people we have never met who have contacted us, but one I will share now is of a group of moms at Seacoast. This group of women, who have never met me, came together to put together a box just for me. Gifts, cards, even money...put together out of concern and care for my mother's heart. As I went through the box, I shook my head and repeated more than a few times "It is too much." More than the things in that box though, I was uplifted with encouragement. Those women won't ever know how much that act of kindness lifted my spirits.

Elizabeth's Pediatrician. Wow. A few months ago, I switched to a different pediatrician in the group the kids go to. All of the doctors there are great and know about Elizabeth and at one point or another have cared for her while they were the on-call hospital doctor at whatever point Liz was inpatient.
Switching to having Dr. L. be the primary Pediatrician of the group that is caring for Liz has been a huge thing for me. She is steering the ship and she has been amazing at helping me balance all of the other specialties seeing Liz. She calls me on her own every couple of days (daily some weeks) to check in and has been so very supportive. I have described her, just as others have, as super smart and an advocate for my child, but not someone who would hold your hand or give you a hug; it is just her personality. And, knowing that she was kind and so very smart, I have been fine with not having a "hugger" for a doctor. I will officially go on record now, though, and say that I was wrong. Last week was her turn for rotation as the on-call doctor, and when she walked into Liz's hospital room, after we'd been there for 15 days, she came to me and asked me for a hug, and then just held me. I about gasped! She then asked Liz if she could hold her. Amazing...we broke her down : )
Even more amazing is having someone lead us through all of this mess. Grateful for her.

My faith. I do not know many, many things. But, I do know that Elizabeth Claire was His child before she was mine, and He would never do any of this without a purpose. I know that we are to live life to bring glory to Him, and Elizabeth- with her strength, inspiration, faithfulness and belief in her God- is doing just that with her life. I question Him, I do. But I know that faith is the reason we are getting through this.

Walter. Oh my goodness, this man has driven me crazy. If you don't know our story, well, read back through this blog. Even then, it isn't all there. We have been through difficult, difficult things and at times, we were simply holding on. Actually, over the years, there have been times when Liz was what was keeping us together. Now, twelve years into marriage, he has had an awakening (or something!!) and has been amazing. I could do a whole blog post on this. He has just been so, so supportive and it has had a huge impact on how I am able to deal with everything.

My sister. Well, I cannot write much about her because I started to cry five minutes ago just thinking of her. Megan is a mother to my children when I cannot be. Seriously. I miss Jackson and Kate when I am not with them, but knowing they are with Megan means that I never worry.
Meg also has an amazing ability to listen. She allows me to vent without judging me or overpowering me with advice or opinion. She is gentle and compassionate and encouraging. I could not do life without her...I just couldn't.

My girlfriends. I knew I had friends, but I didn't know how cared for I was. To have friends come alongside me with meals, notes, offers of help, texts, e-mails, calls.... it has been amazing. I have said it before- going through this all leads to having a feeling of lonliness. As I sit in the hospital, or spend each and every day with Liz at home while watching normalcy go on in the lives around me, it is isolating. If you have reached out to me in even a small way, please know that it has impacted my life.
Speaking of friends....

......I am lucky to have some mentor mommas as friends. These girls are amazing! You would never know by looking at them (especially in this photo booth picture of us) how much weight they carry by having sick children. When I say sick, I mean really, really sick. And while we are able to commiserate and share the horrible bond of mothers who have sick children, they are much more than that. These three (and I am fortunate enough to know more than the three of them who offer the same thing) are examples of strength, and being with them is wonderful.... because for them, life is difficult and sad at times, but it is also fun and amazing and way more than the commonality that brings us together in the first place. It is important to surround myself with others who see things the way I do; That is, that this (illness, diagnosis) is what is happening to my child (and to our family), but it does not define her....I refuse to let that happpen. And for this reason, E. has raised amazing young adults, N. was able to plan an amazing night for Liz and Maryam, even with stress of having her own sick children, and K. and I were able to hook our girls up to IV's one minute and then get into a photo booth and giggle the next.... we know that life is just too amazing to sit around and mourn what you wish was so.

So many things helping me keep afloat.

Pray for our Liz tonight. She isn't handling the IVIg as well as we'd hope for this round. Last night she had retching and that has continued through to tonight. She is achy and her head is pounding.
She is pretty anemic and so she is extra tired and super pale.... she is kind of a mess right now.

Focus

It seems that lately I only have enough in me to write updates.
Today, Liz and I spent seven hours at the hospital's Infusion Center for her monthly transfusion. IVIg runs for about five hours and then she is observed for two hours after that. Last month, she had an issue during the infusion, but today she did really well. Tonight however, she is having a difficult time. Headache, fever and retching...all effects of the IVIG. Remember, IVIg is made up of blood product from many, many donor blood samples; her body is reacting to the foreign blood. Adult recipients have described the effects as feeling like a horrible hangover. I feel horrible for her, especially since she is physically unable to vomit, so she can only retch and not get relief from vomiting. Hopefully the Zofran will kick in very soon and she will be able to rest.

We got yesterday's lab results. We are happy that Liz is handling the TPN and Lipids well. Many times, the Team needs to alter the mix of TPN, as a patient's body needs more or less of a certain thing (sugars, carb, ect.). Also, her liver and kidneys are monitored during the time she is on TPN. Everything looks good after two weeks of it.

Unfortunately, her other blood counts don't look very good. On Sunday, when she had labs drawn at the ER, we knew they came back low and her doctor was hoping that maybe Liz had a diluted blood sample, which could have caused low counts. Yesterday, the home health nurse drew labs and that blood also shows her counts are low. So, Sunday's results were not a fluke, she really does have some of the lowest counts she's had in a while, and certainly it has been a very long time since all three cell lines were this low at the same time. Frustrating! Tomorrow, her Pediatrician will speak to the Hem/Onc doctor and see what they want to do. Sigh.

I am trying to focus on the positives, but it is very discouraging to see her counts like this. Frankly, it makes me nervous.

Since I am trying to stay positive tonight, I will focus in this little guy....

...... who spent the afternoon at CEC with Daddy, for some much needed man time.
My angel of a boy has had some difficulty controlling his temper lately- a result of being bounced

from house to house and having me away for three weeks, I am sure. He has always been such a good little boy, and Walter and I know he just needs a little TLC and routine right now.

Hug your healthy kids tonight.....and keep praying for my Liz, please.

Update

Phew! Almost three weeks in the hospital- in an isolation room, with the exception of
about twenty minutes each day- and she did it! SO excited to be going home... not as excited to be
going home with an iv pole. Liz never gives up. Ever.

I had a few little cries over the three weeks we were away, but nothing like the tears that started as
I came around the corner of our street and saw this. A "heart attack", put together with a lot of love and a lot of effort.
Each heart had a message written on it from a friend of mine or a friend of Elizabeth's. The time it must have taken to attach each heart to a stake and put it into the grass (especially difficult, as we are letting our grass die in preparation for landscaping).
I started crying and didn't stop for hours. The love and support is amazing and this act, well, there are no words.
Alana, and all of you who spent time on this, I hope that you know how much this lifted our spirits. We know we are cared for, but as we watch "normal" go on for those around us, it begins to feel a little lonely. To know that we are so supported is more than you can imagine.


I promise to write a much longer post tomorrow, but I am exhausted tonight. I want to just update a few things:
Liz was discharged from the hospital at 2:00pm on Friday and we rushed home to meet with the Home Health nurse, so that she could train me on the IV pump I use each night to run Liz's TPN and lipids. Once she left, we rushed to pack for the special event that was being held for Liz and a new friend, Maryam. Camp Hollywood was amazing and I cannot wait to post pictures and tell you about it!
Camp Hollywood ran from 6:00pm Friday- noon on Saturday. Sunday my sister Megan and her family came over so that the kids could see Liz. Liz had been complaining of pain of her PICC line arm and I was a bit concerned, but knowing how active she had been over the past two days, I thought it could be muscular. By early evening, though, she had a raised temperature, and I knew I needed to call the doctors. Both MD's instructed me to head to the ER. Blah!! So much for normal.
We were at the hospital last night from 7:00pm-3:00am. An ultrasound showed no blood clot and an xray showed her line was in place. Usually, a patient may be given an antibiotic while we wait the two days for the blood culture to come back, which will let us know if there is infection or not. Because Liz gets CDiff when she is on an antibiotic, the docs elected not to do this. We should hear back tomorrow. The Clinical Nurse Specialist who specializes in PICC's thinks that Liz has something starting in the line and that we may need to take it out and place a new one. Sigh.
Last night, Liz's labs showed that her counts were pretty low- not good. It has been a while since they were so low and having all three cell lines like this makes me uncomfortable. The home hospital nurse was already scheduled to come today to draw her weekly labs, so her doctors had the nurse draw even though she'd just had labs last night. This will either confirm that her counts are indeed so low, or they will be higher and we'll know her blood drawn last night was diluted. If her counts are truly so low, Hem/Onc will decide if they want to do the bone marrow aspiration now.
Tomorrow we have a six hour day at the hospital while Liz gets her IVIg.
That all sounds pretty negative...and it is. Life is hard; really hard now. BUT, I want to end this post on a positive note...
you can only imagine how strong Elizabeth is. I had no choice but to hang in there and keep going over the last three weeks because of Liz's example. She never gives up, never stops believing that she will be fully well, and trusts what she knows is true and even things she doesn't. She is more than I could ever be and I am so proud of her.
Courageous, brave, hopeful, praying, enduring, Elizabeth Claire.

18

After 18 days, Elizabeth is scheduled to be released from the hospital tomorrow....hooray!! We have been here so long that I don't remember at which point being in started to feel a bit normal. I am beyond ready to get out of this place and home to Walter, Jackson and Kate.....but a tiny part of me thinks of how I will miss my almost-three weeks with Elizabeth, in this room together twenty four hours a day.
I have that thought and then I think of this chair bed and the isolation and awfulness of the hospital and I snap back to the reality of how even alone time with my girl doesn't make any of those things worth it. : )
Elizabeth actually lost weight over the past day and a half, and her Prealbumin labs aren't as high as the doctors were expecting, but the team recognizes that Elizabeth needs a break, and so they are letting her go. If she needs to be readmitted, well, then we would deal with that later. For now, tomorrow is the plan and everyone is anxious to make it happen, especially since Camp Hollywood is taking place tomorrow night!!!
Camp Hollywood is an overnight camp that a friend of mine has organized for Liz and another eleven year old patient here. Both girls have to miss out on their 5th Grade Camp experience, and this friend had the wonderful idea of putting together a special night for them. The Girl Scout Council has donated their camp and house here in Long Beach, and many other donations have been made as well.....restaurants, people to do hair and make-up, a photo booth....the list goes on. It is such an amazing idea and the night will be special. Liz's doctors know how much she has been through and see her as a whole, including her mental health, and have voiced how important it is for her to have this experience. They are so supportive, in fact, that Liz will not even receive TPN tomorrow night. They have instructed us to just let her have a night off for fun. We can do that!!

Walter spent some time today at home preparing for Liz coming home and the changes her TPN and PICC line will bring. We thought we'd move her into Jackson's room so that she wouldn't be sharing space with Kate; if her pump were to sound then Kate wouldn't be disturbed during the night and Kate wouldn't have to be around the IV pole and supplies, since she is freaked out by it all.. Also, Jackson's room is next to ours, so I could hear her. She is insisting on staying in her room, so we are going to give it a go. Luckily, the girls are fortunate to have a huge room, so Walter moved their beds and the futon around, and now Liz is a little further away from Kate's bed.  We'll give it a try.

Speaking of Walter.....he decided to take TWO weeks off of work. unheard of for him. He has so much vacation time accumulated that he can't get any more until some is used, but it is not easy to take time off, so his days just sit there wasted. He felt strongly that he needs to be home with the family right now, as we've become a bit disjointed. I am in shock that he has done this, but very grateful. God works even in horrible times, and if you know anything about Walter or things we have faced, it is awesome to see how he has grown to put family first....how he has become a man who has his priorities in line this way.

Cannot wait to be home.

Ready, GO!

"I'm done, I'm done!' Liz cried over and over again this afternoon as we worked to get the tape off her face so that her NG tube could be pulled. She is amazing and though she may verbalize how she doesn't want to do something, she always is so brave and goes along with whatever we ask of her or put her through. It took hours to convince her that she had no choice but to have the tube removed, and though she was terrified, it got done. In fact, she pulled it out of her tummy, throat and nose herself!!!
17 days into this admit, and ten years into medical issues, she finally reached her limit of tolerating it all, and cried as she refused to let anyone touch her for hours after.
My momma heart.

I agree with her. I feel done, too. I also look done; three people who know me well said I am looking pretty bad at this point. A sweet friend (who did not offend me at all, and can speak openly with me, as she is a hospital mom too) said
 "oh wow! What happened to you between Monday and today?!"
I guess I have proven that day 15-17 of a hospital stay is when I am officially over it.

I have had hardly any sleep in the past three weeks and literally not more than three hours in the last two days (Liz's IV beeped EVERY 5 minutes the last two nights). Still, I had to pull myself together for today because we had a full day of education and meeting with doctors. I don't drink coffee, but today I wished I did!

Walter was here all day to receive the PICC line and TPN training with me. I have been around this medical stuff for a decade and feel comfortable with much of it, but I will openly admit how overwhelming it is to take in all of the education and know that I will be giving Liz the TPN and dealing with her PICC all on my own (a home health nurse will come only once a week to draw labs and do a dressing change). I know that after I do the whole process, I will become much more comfortable with it all, but right now I am super nervous. It is a little crazy if you think about it.... I am not a nurse and I am being trained in a matter of a couple days before being sent home to give meds and TPN to my child, through a PICC line that feeds into a major vein that leads to her heart. Ready, go!!
Yikes!
Speaking of yikes.... every person who has a PICC is at risk for infection. Liz is not unique in this. Liz is unique though, in that she is a patient who has recurring CDifficile along with a suppressed immune system. If one gets an infection in their PICC line, an antibiotic must be used....if Liz needs an antibiotic, she will develop CDiff. This, especially, is why a PICC was a last resort for Elizabeth's care plan. The Team has decided to use an Ethanol lock, which is a treatment intended to prevent infection of her line. Liz is the first patient at this hospital to use ethanol prophylactic for a PICC. Ethanol is basically alcohol, and I will instill it into the priming space of her line, where it will sit during the hours her TPN is not running. by having the ethanol dwell in this part of the line, bacteria will be less likely to grow. Each night, before I give her TPN, I will aspirate (remove) the Ethanol. Hopefully, using it will greatly reduce Liz's infection risk.

Liz's line is flushed with saline before and after TPN.



After I attached the filter.




There it is. TPN= Total Parenteral Nutrition and Lipids.
 Liz gets her TPN and lipids at night. I start it at 11:00pm and it runs for eight hours.




She does not lay like this all throught the night. Liz is dancer, even in sleep, and she thrashes those pretty arms
around all night.



Eeekkk! Here we go....my first time hooking up the TPN to the PICC line.

There is much more to explain about the while process, but I am too tired to write about it tonight.
Please keep praying for Elizabeth. Tomorrow we are hoping for weight gain and better labs.

Update



Our human pin cushion. Poor baby. An IV in one arm, PICC line in the other, and a tube down her nose and into her tummy.
Today she said that if anyone even thinks about putting in a catheter, she is out of here. she threatens, but you know what- she would take it like a champ, just as she does everything else.



The procedure in the Operating Room to place the PICC line went very well. It is shocking to see the photos of how they thread the catheter into her vein and use ultrasound to place the PICC. Tonight, her nurse removed the wrap and we saw that her gauze was soaked through in blood, which is not normal, so a team of nurses came into the room and accessed. Liz is having pain at the site and had to endure the nurses removing the Tagaderm and gauze, so that new gauze could be placed. They are pretty sure that her little incision was made just a tad too big and is the cause for the bleeding, as opposed to her having a problem wiht the PICC itself. So far, there seems to be no new bleeding. Liz does not complain easily at all....but she is having pain tonight and it is causing her spirits to be pretty low. She won't talk to staff or even look at them when she is being spoken to. I guess she figures that she isn't here to make friends and she is upset at those who cause her pain- even if they are trying to help her.
I cried today. This is just all a bit much. I cannot believe I have a child who looks sick and who has to have a PICC and be on TPN. It is easy to remind myself that this is temporary, but it is a little hard to believe it when Liz has had such a difficult two years- getting worse rather than better.
Dr. Brilliant graced us with his presence today (sarcasm should be noted). We just don't relate to each other well, but I think we may be coming to a point where he understands I won't back down and I understand he does care about my girl and his brilliance gets in the way of any bedside manner. In any case, we are starting to speak the same language. So, Dr. Brilliant spent a few hours with the Oncology Pathologist and they went over samples and slides from all of her bone marrow aspirations. There is much to be said about what they talked about, but I will save that for another day. I am happy and relieved to know that so much time is being spent on Liz's case, and I was validated in my frustration when Dr. Brilliant said "we need to figure this out; it is just not right". Tonight Liz had blood taken for yet another set of genetic tests that Brilliant wants to run. We'll see.....

My goodness, how we wish this would be over. So many things we are praying for- too many to list right now. For tonight though, I just wish for it to be over.
So grateful for all of your prayer. For family and friends. For my husband and the health of my family. For beautiful, wonderful Kate and Jackson. For medical care (however screwed up the system may be). For caring, kind nurses.
And for the bravery, strength, inspiration and life of my Elizabeth.



Please

After much debate, a team meeting, and advice- I have agreed and authorized placing a PICC line in Elizabeth. I will explain more tomorrow as tonight I am home to do some chores and snuggle with Jackson and Kate. Please, please hear my cry for prayer and pray with us tomorrow. Liz has a 1:00 OR time, for the PICC to be placed and for a fourth bone marrow aspiration to be done. It is more than difficult to authorize things like this and send her to the OR, but it is time and I am trusting myself in making this decision. Pray for my little Liz. Please.

Good day with my lizard

If one can have a good day at the hospital, then we had it today. Liz woke in a much better mood than yesterday and we were very happy ( I may have screeched!!) at the fact that she gained two pounds! A great way to start our morning.
Walter came by the hospital for about 45 minutes to see his Lulu, give me time to take a shower (SO hard to do because you never know when the docs are going to round. Liz has five coming to see her each day, all at different times, and I don't want to miss them!), and hold me for a few minutes. Man, I miss getting hugs and kisses from my husband while we are two ships passing these days.
My dad had Jackson and Kate for the day and stopped by so that we could all see each other. Liz showed Kate how to do magic that nurse John has been teaching her; Jackson and I took a walk; I snuggled with my 5ft tall, ten year old volleyball-n beauty, and a few volunteers came by to make paper flowers with the kids. Such fun, right?!

After our visits and the doctors all coming and going, Liz and I headed to the garden to play cards and count butterflies. We then walked a bit (really important, as Liz is confined to her room once we are inside the building, and at 12 days, she needs to keep her body moving and lungs working!) and headed over to the Reflection Pond, where we sat soaking in the sun and watching the  Koi. I told Liz we were like little lizards sitting in the sunshine taking it all in....and she did not appreciate that analogy. My little diva does not see herself as a lizard in any sense. Noted.

I am grateful for a good day, especially since the evening has brought a dip in my spirits. Honestly, it was running out of toilet paper that brought me down : )
The fact that we have been here long enough to go through a roll of toilet paper is just depressing. 12 days is so very long to be suck in this room- watching other patients come and go, nurses have days and days off, missing dates I'd had planned and circled on my calendar, and knowing we have at least five days more to go. I usually have such an easy smile for those who come and go from our room, and I am finding it more difficult to make small talk or easily smile at one's jokes.
When we were at the pond today, Liz said " We are doing a good job in here and we're almost done"
She is just so amazing and though she has her moments of anger and sadness, I cannot get over how well she is handling this.

The latest plan is this:
Tonight and tomorrow night her feeds will be cut in half (calories). If she gains weight, she will not have the PICC placed Monday, and instead she will have her counts dropped more and more, weaning her and watching to she is able to maintain and gain, by taking in calories by mouth only.
I am trying to be positive and believe that this can and will happen, but we all are not banking on it. The doctors said it is a long-shot, but we all want to spare her the PICC (and risk of infections), so we are trying to give her time to show us she can do it...if she can do it.
Last time we cut her feeds, she lost weight.....
If that happens, she will have the PICC placed at 1:00 on Monday.
Her labs show that her WBC, RBC, HCT, ANC and platelets are dropping more each time they draw blood. I was told that Immunology and Hematology are talking over it and will decide if they would like to do anything about that now. Her counts have been worse before, but they are low enough that they have gotten everyone's attention.

Missing home like crazy and praying for weight gain.....

Friday

Today I saw Liz walking towards me, with her mask on and her tube down her nose, and I couldn't help but gasp a little. That sick looking beauty is my girl, and it strikes me sometimes. It may sound unbelievable- and I can understand how- that I can live each day at my Lizzie's side, caring for her needs and taking in everything the doctors say to me- but not fully grasp that my girl is sick. I kid you not, I have asked the doctors if Liz is really a chronically ill child at two points during the last twelve days of this hospital stay alone. This blog, on most days, is about Elizabeth; I won't start a CaringBridge page because I am waiting until I know that Liz truly is sick. Ridiculous when I write that, and I am struck at how maybe I am waiting until I don't even have to question that.
I am not in denial at all....I am just so hopeful that she will get past this, confused at how we got here, and in awe of how bad it has gotten. You have to understand that though Liz has dealt with health issues her whole life, never has it been as bad as the last two years. Never. And so, I just cannot wrap my head around how sick she has become.

Today has been as good of a day as can be expected under the circumstances. My little party girl has been staying awake until after midnight (not going to be fun once we get home) and she sleeps in until at least nine each morning. Today we woke her early as Respiratory came to get her and take her for a test. How rude of us! : )
The rest of the day has been pretty quiet- a walk in the garden, watching the koi at the little pond and enjoying being out in the fresh air, jewelry making thanks to a gift from a sweet friend, and now watching all of the bridal shows on TLC (thank goodness for these shows, as I cannot take one more episode of Storage Wars or The Cat Behaviorist!). She cannot walk the halls or go to the playroom because of risk of infection (a daily concern that has prevented her from doing that from the start if this stay, and now a big no-no as today's labs show that her Absolute Neutrophil Count is only 800). She is a moody little thing as each day passes, and is not happy knowing that Monday will bring the trip to the OR for her PICC to be placed. I am trying to remind her to stay positive and upbeat, convincing myself to remain the same as I speak the words.
Grateful for a good day. Please keep praying!!!

Update

My earlier post turned out to be much different than I'd planned, and in the middle of all that emotion, I didn't include facts of what has been going on with Liz the last two days. Here is a feelings-free, unemotional re-cap....though I can't promise I won't use a few choice words.
On Wednesday night, the docs dropped Liz's night feeds to half the calories as she'd been getting, just to see what would happen. As a result, she lost over a pound. So, last night they bumped the feeds back up and today her weight showed she gained the pound back. Yay for a gain.....but what a bummer that her body isn't gaining or maintaining without the NG tube feeds. Also a bummer is the fact that with the increased appetite stimulant dosage and increased calories with the feeds, she has not gained much at all; hasn't gained much more than she started out at when she was admitted. Because of that, and because the doctors think she needs help, the plan is now to put in a PICC line so that she can go home on TPN (nutrition in the form of lipids, amino acids, etc. given through an IV). TPN will be given for a few months, and if she continues to need support for weight gain, she will have a Gtube placed in her abdomen.
Tomorrow she will have a study done that tests how many calories her body is burning while at rest and how many calories her body requires to meet her metabolic demand- which her doctors know, and labs confirm, is high. Meaning, Liz burns through calories in large amounts simply by being at rest.

Many have asked why. Why is this happening? Why can she not gain weight? Why does she have "severe failure to thrive"? The docs think it is a combination of things, primarily having to do with her bone marrow. If her body is working extra hard to make marrow, then that puts a demand on her other systems. Nutrition is so effected and plays such a role in our system. That huge issue, mixed with her motility problems and her body not ever having a chance to recover after each infection, adds up to a huge problem.
The TPN should help. And, once she gains weight her Prealbumin count will go up and her strength will begin to return, and she will just feel better. Shell also be able to fight infection better, of course with the help of the IVIg as well.

She had labs drawn tonight (CBC with Diff.) because Hem/Onc wanted to see how her WBC, ANC and Plateletes are looking this week. GI wants to see how her cells are looking on smear.
She also had an xray done this afternoon because of issues she has been having the last few days. Those pictures show that she is becoming impacted again. Unbelievable. Something new is going to have to be done for motility.

So, we've been here 10 days and will be here at least a week more. So, so long! Her OR time is scheduled for Monday at 1:00. PICC will be placed, they'll start using the line and watch her for a couple days while I get the education needed to be able to run the IV at home by myself, and we'll get home health care set up during those days as well. We are hoping to be out on Wednesday.

Liz had a really rough day emotionally- angry, sad, frustrated and mean....everything she is allowed to feel. Thankfully, tonight she has been better and is adjusting to the fact that well be here even longer than I thought yesterday.
She is amazing and strong....and so I have no choice but to follow her example.

Day 10

I would really like to go home now. I would like to pick my other two kiddos up from school. I would like to be available to wash Kate's volleyball shorts and knee pads so that she doesn't have to call and ask me how to do it. I would like to be able to tuck Jackson into bed, especially when he says "I wish we were together again like our family." I would like to nag the kids to pick up their laundry. I would like to be in my own bed- listening to the girls giggle when they should be asleep, Jackson humming along to his radio (he insists on listening to music as he falls asleep), and with the warmth of my husband lying beside me. I would like to have a conversation with my husband that is more than five minutes long and, even if words about Liz aren't being spoken, doesn't include seeing weariness in each other's eyes.
I would like all of these things very much. I am trying to be so calm, but I am barley hanging on to being in control.
I realize this may sound dramatic because we will go home eventually and life could be much worse...but being here for ten days and knowing we have at least a week longer in the hospital, brings feelings that sum up this whole journey we have been on with Elizabeth. Nothing is normal it feels and I am, well, homesick. Even in my home I have that "homesick" feeling- I miss normal, what should be, and the way our family was.
I started reading a fiction book that began with the characters as young sisters, one of whom had been very ill. In it, the character says how her sick sister became the center of the family and over time, everything else revolved around her. Spinning. Well, I stopped reading on page 12 and I won't be finishing it (actually I will be returning it because it got into being a weird book about magic and fireflies, which is a whole different story).
My point is that I held my breath when I read that part. Those who know me have heard me say many times that I refuse to let Liz's illness become who she is; who we are. It is what is happening to her, but I won't let it become her. Yet, when the illness becomes so big- it is hard to fight against that very thing...so difficult to keep from things, plans, schedules, time,  from revolving around Liz's care.
Being stuck here, away from my precious kids and my husband; with others needing to help care for Jackson and Kate while I am away, paints a very real picture of us revolving around Liz.
Day 10, at least a week to go, and just spinning.