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

Monday, June 25, 2012

Phoenix or Bust!!

Tomorrow at 4:00am, Kate and I start our drive to Phoenix for her six day volleyball tournament.
Because we are going back East this month for a long family vacation, Walter can't take this week off of it is just me and my adorable, moody, hormonal pre-teen. On a six to seven hour roadtrip.... whoa.
Months ago, I thought about making it a girl's trip and having Liz come along with us, but then over time it started to make sense to not have Liz come along. It is SO hot there, and she doesn't do well in the heat. The days are 7-8 hours of volleyball which she finds super boring. Also, it will be nice to have one-on-one time with my adorable, moody, hormonal pre-teen (are you following the theme of Kate lately?). I am nervous to leave Liz, and her doctor (who has called twice in the last two days to talk about her...seriously lucky to have Dr. L) was shocked that I am leaving her here, but it will be good to have time apart. Liz has become anxious when I leave even for a few hours; months and months of time together all day, every day, is not good. She needs to know that she doesn't need me and she will be fine here under the care of our extended family. Ugh, my stomach is in knots over it though!
Dr. L will call me tomorrow or Wednesday and let me know results of some of Liz's labs, and if anything needs to be done, Walter and my sister or the grandmas will deal with it. If something was to become emergent, I can always fly home. Please pray for Liz's health this week and for her adjusting to our separation, and for a safe drive and trip for me and my Kate.
110' weather (yuck!); tons of volleyball; time with my adorable, moody, hormonal preteen; no cooking; no chores; pools; and Phoenix!!

Friday, June 22, 2012


Yesterday was our day at Children's Hospital Los Angeles. It was a long day and I am a bit overwhelmed with everything that was discussed, so rather than go into heavy detail tonight, I will post in photos.
We still have no clear-cut answer about what it is that is the main cause of Elizabeth's issues. I want so badly to have a simple and clear diagnosis, tied up in a pretty bow with a "take this pill and all will be well" order from the physicians (or better yet would be to have all doctors tell us nothing is wrong at all). That just isn't happening. If I hear one more time how uncharacteristic she is or how complicated she is, I may throw a fit. The truth is that one main thing is causing all of the other things, and they just need to find that primary thing.
We heard many things, many possible diagnoses, again yesterday. I have learned not to freak out about any of them because she fits the mold for other things too, yet hasn't tested positive, and if I panic at each one, I will go crazy. Crazy is not allowed : )
She had 17 (!!!) tubes of blood drawn yesterday to run more tests. There are a few things that, if they come back a certain way, we will have more direction. So again, we will wait.
One positive that I took away from yesterday is that the CHLA Hem/Onc feels strongly that her bone marrow issues are not a primary diagnosis. That is to say that "her bone marrow abnormality/lower function, is very likely being caused by a primary nutritional or immunity issue." We left all of her biopsy slides there and the team will look at them under microscope and discuss and then report their findings.
I am starting to get into details that I don't want to right now, so I will stop. Know that though Liz has been very sick and is still considered fragile with a long way to go, I absolutely found positive things in yesterday's meetings.
If you are still praying for Elizabeth and following her story- thank you. I know that my blog entries have decreased, but please know that we are grateful for each prayer and for every person who thinks about her and hopes for her complete health.
Liz is most at home at Miller's, but her second favorite hospital is CHLA because....
there is a McDonald's inside the hospital AND a butterfly is their logo.

Our first appointment was at 10:00, and we had hours until the next, so we walked over to
Acapulco. I never allow Liz to eat at buffets because immune suppressed patients shouldn't and because of her
gut issues. Because we were the first and only guests, and because the buffet had just been put out, I allowed her to eat from it. (Holly, I can hear you sighing!) She ate SO much. We joked that because she weighed as much at her second appointment with her shoes off as she did at the first when her shoes were on that she ate as much as her shoes weigh.
Hours later, she got super sick and dry heaved for 40 minutes, so she won't be doing that again.

Precious, precious cargo. Isn't medical science amazing?!
Liz is literally holding samples of her own bone marrow, from
her four biopsies. Wow.

I LOVE this photo. Neither one knew I was taking this picture, as I was paying the valet when I looked over and saw them like this. Her face speaks volumes. Walter was trying to distract her from her horrible stomach pain and retching, and he undoubtedly was telling her silly and immature things at my expense, but I just love how content she looks in the comfort of her daddy's arms.

Leaving after a 6.5 hour day. Elizabeth is so amazing and tolerant, I am struck by her attitude every time she endures these long days of appointments, pokes, prodding and lengthy discussions. After the long day and feeling so sick, she had had enough and totally out of character asked to be carried. The security officers and valet guys offered her a wheelchair as they watched her retching, but she looked at each one and said "I'm not sick!" : )

Friday, June 15, 2012

Weight. Wait.

This has been a great week, and I will do a long post including pictures tomorrow about the super fun week we've had with all of the girls' 5th grade activities and promotion day. Seriously fun stuff!

Tonight though I will share a little about Liz and I will start by telling you that today we did not schedule an OR date for G-tube placement because....she hasn't lost any weight in the past 3 weeks. She's holding at 73lbs (she lost six after stopping TPN back in April). Dr. T's exact words were "we are not in a place where we can stop worrying yet and it is still a very real possibility because she must stay in a safe zone. If she loses any weight at all, we must go ahead with the feeding tube. BUT, go on your vacation feeling good about this visit."
Unless we notice a weight change (and I am NOT weighing her unless I think she has lost) or she gets sick enough again to need intervention, we can wait until July 20th for another weight check and g-tube discussion.
It is difficult not to go to a place where I focus on the fact that she cannot lose weight..."or else", but that weight is so heavy that it is something I can't worry about daily, so I just have to know that we are doing our best and whatever happens, happens. It is SUPER important that I encourage Liz to have that mentality as well. People sometimes don't understand the mental anguish that those who struggle with being underweight face. So very stressful and frustrating.
Dr. T again said how nutrition issues will be something Liz will live with forever, and we just have to find what works for her, whether that be a feeding tube or otherwise. Unfortunately, she is at the age where puberty is starting to hit, and that plays a whole different role in her growth. He again voiced how important he thinks it is for her to start seeing a dietitian regularly and build a relationship with that one person (much like a therapist), so that she can use the guidance of the dietitian while feeling safe and comfortable. In a way only God knows, Dr. T recommended a woman who we actually know, as she attends our church. Amazing! I know this woman is sweet, sensitive and Liz has met her and likes her. To know that the doctor respects her work is just such an extra bonus.

Walter and I took Liz on a breakfast date to celebrate her great appointment.
All of that food is hers! She is trying.
I needed this good news today, as I have been struggling with some of my decisions regarding Liz's care. As I have watched her live so "normally" this week, I ironically have been feeling a weight tugging at me, worried that some of my choices may effect her negatively. Today's visit of good news helped ease a bit of that for me.
This week, anchorwoman Robin Roberts announced that she has MDS (myleodysplasia). This has been the top of the list possible diagnosis for Elizabeth for two years. It is what each bone marrow biopsy has been sent on to an outside lab to rule out through cytogenetic and FISH testing. Many times the Hem/Onc doctors have said " this looks so much like MDS". So, I heard Robin's announcement and it struck a chord, and then the following day I picked up Elizabeth's bone marrow slides and pathology notes (to be taken with us to CHLA for their team to look at next week), and my stomach sank a bit again.
It is really difficult to read her pathology notes. In NO way do I mean to undermine the feeling a parent must have when they read a report that includes a diagnosis. Still, it makes me sick to read report after report sighting abnormalities with Elizabeth's marrow.... "such and such is seen, but no evidence of acute leukemia" or "such and such is seen, send for Cytogenetics".... difficult to read.
I PRAISE that no diagnosis is given, please know that I do. I just wish I could read a report where all looks normal and well.

So, Liz had bloodwork done on Monday, and due to lab error, had to have more blood drawn yesterday. ALL of the super important labs needed for next week's appointments in Los Angeles were not processed from Monday's labs. Grrr. Her Pediatrician was not happy and ordered me to take Liz to our closest Lab. I did, and because they had run out of toner, their fax machine wasn't working, so Liz's orders hadn't been received. Because of that, I had to trek over to the hospital with my immune supressed kid, and expose her to all of those germs. It took that lab over an hour to figure out what tubes would be needed for all of the specialized tests being ordered. I was so mad I was quiet....which is never a good thing. I finally asked the Lab techs if I should call the CEO of the hospital and ask her what tubes should be used. Liz actually said " Oh this is not going to be good" when she heard my threat. : ) Bless her heart, she was an angel who waited so patiently for those people to get their acts together, while watching me quietly fume. We'll have to wait for the results of the labs.
The labs that actually were done correctly on Monday show that her Hgb has come up some, which is good and shows the iron supplements are working (yay!), her platelets are down right now (never a surprise due to her platelet antibodies. No knife throwing or trapeeze work for our girl with this platelet count : ) ) and her white count and neutrophil count is down in a yucky area (boo!).
The neutrophils being this low make me nervous, especially because she is now two months out from her last immunoglobulin infusion, so she doesn't have any donor cells floating around in there helping to fight off infection. At least we aren't in flu season, but time will tell what her body will do now that she is fighting on her own. This is one of the decisions I have been struggling with having made.

Tonight I am focusing on the fun week we've had, the way we avoided booking surgery today, and the fact that as I write this our Liz is at a friend's house (totally shouldn't have let her go be around a room of 10 preteen girls, given her ANC, but I just had to give in this time).
 Carrying a bit of weight on my heart and mind, but life is so good.

Monday, June 11, 2012

I would be very grateful if you would please go to and vote for my sweet friend Christy and her husband Paul. It takes 30seconds, one click ( Christy amd Paul)and requires no login or information. If you'd like, you can also view their beautiful video entry and get a glimpse of love, faith and hope. Christy has wanted to be a mom more than anything and has patiently gone through the motions and process for years. Please help. Thank you.

Four months....and done!!

Last night I wrote that when Walter went to do Liz's PICC line care, he was unable to get any blood return when he tried to aspirate her line. I tried for well over a minute to get blood to flow up out of the line and into the attached empty syringe....and nothing. Finally a small bit of blood came, and I was hopeful that there wasn't an issue with the line. When I went to flush it (I attach a syringe filled with sterile saline and push the saline through the line nightly as part of line care) though, I had total resistance....her line was occluded. I just knew there was a blood clot. Rather than take her to the ER and go through the process of trying to rid the line of the clot, I decided to wait until this morning's planned visit from her home health nurse and a chance to speak to her doctor.
Remember, her doc said that the PICC would be coming out before our trip to Maine, so I have been thinking that at Friday's appointment he would call for the removal of the line next Monday. I saw no point in going to the hospital and putting her through the process of de-clotting, if there was a chance the doctor would say to just pull the line instead.
A nurse who happens to be a nurse at Liz's hospital, (who I totally trust and like very much) Jenilee,happened to be the home nurse who came today. She confirmed the clot and we got a hold of the doctor's office, and they authorized pulling out the PICC!! 
After four months, the PICC is gone!

This is part of her PICC line. The line feeds into a large, major blood vessel close to the heart.
I have a love-hate relationship with this thing! I LOVE that it was essential in helping carry the nutrients (TPN and Lipids) that allowed Liz to gain weight. It also was a saftey net for us, in case Liz needed antibiotics- the medication could be given through the line rather than orally, which reduces risk of Liz's CDiff flaring.
I cared for this baby each day and I am totally grateful for it and for the technology that allows its use.
BUT- a PICC carries risk of infection and blood clots, and each day I would thank God Liz hadn't developed either in this line (remember, her first PICC had to be pulled and replaced due to issues). I felt it was a ticking clock and I have just wanted it out. Goodbye wonderful, risky PICC!!! Thank you for helping our Liz grow and be treated medically from home rather than hooked to an IV in the hospital for four months.

This is Liz's face after hearing the line was going to come out!!!
I don't have a photo of minutes after this, when she realized the nurse would pull it out right at that point, and not while sedated. Oh man, she kind of lost her mind and wailed for 20 minutes. Poor thing, it was just such a scary thought to have someone pull it out of her.

She did great though, and later said how it didn't hurt at all to have the line pulled.
Bring on showers, pools, the ocean and water balloons....she can get wet again!
I think this brave little girl willed the darn blood clot, as she didn't want to have it in for Wednesday's 5th grade promotion ceremony. She got her way (even if in a scary way), and now she will look just like the other kids at school.... nothing different about her. Well, except that she is the bravest of the bunch!

Sunday, June 10, 2012


It has been almost two weeks since my last post, mostly because I have been enjoying almost as
long of a time of having no appointments or hospital trips with Elizabeth. While Liz has had times of nausea and a few fevers, she has had more good days than bad the last few weeks, and I have been soaking in the normalcy of the days. It may not seem normal to others to have to care for a PICC line, worry about germs, manage all of the many medications, or hold a retching child...but it is our new normal and I am seriously grateful for how well Liz is doing right now.
I decided to just take a break from blogging.

Too cool for school. Literally. ; )

I last wrote about how Kate had labs done because of bruising. The results showed that I was correct- her platelet count is low and out of normal range. Ugh. She very well could have the same platelet issue as Liz, in that the body develops antibodies against its own platelets. Kind of a bummer if that is the case, but definitely a "doable" issue if you're going to have to live with one.; she'll just be a bruised girl as she throw her body around as she digs after all of those volleyballs. All of her other counts were great though, and there is NO reason to believe she has any of the same bone marrow issues as Liz. Yay! Because my realm of freaking out has changed over all of this with Elizabeth, I asked the doctor if we could wait until the end of July to test Kate's platelets again (it is something that will need to be monitored, as platelets are what allows our blood to clot). The doctor agreed that as long as she isn't having bleeding, we should just wait the month. I cannot tell you how relieved I am that Kate's other counts are normal!

This coming week is a BIG week in terms of Liz. Tomorrow she will have lots of blood drawn for the many tests we have been waiting for. These tests had to be done two months after stopping IVIG, and tomorrow is the two month mark. The labs will let us know how or if the immunoglobulin infusions changed her blood in the positive way the doctors intended.
You may remember, too, that I went along with the thinking of Dr. Lee and Liz has not had her blood drawn in a few weeks..... we just thought it would be best to give her body a break because she is pretty anemic so taking blood doesn't help the issue at all, and we also were aware that nothing was being done in the immediate as far as her Prealbumin (nutritional lab marker) and other counts, so we wondered why we were allowing GI to keep drawing those labs. I am seriously anxious to hear if her Prealbumin has gone up....that will play a huge role in the decision regarding the feeding tube.
So, lab work tomorrow and then Friday is our meeting with her gastroenterologist to decide on the G-Tube and also to set a date (hopefully) to take out the PICC line. I need this darn line taken out. Each day feels like a victory of not having infection or clotting in the line and while I am grateful for the ways it has helped her, I need this risky iv line out!!
I will admit that I am nervous about all of the labs and also the discussion regarding placement of the G-tube.
Next week, we will meet with doctors at Children's Hospital Los Angeles. We've seen both doctors before, and we've decided to head back. First we'll meet with an Immunologist there who intends on doing some specific white cell testing, and also will use the lab results from tomorrow's lab tests to try to help. Then, we'll meet with a Hem/Onc there and he'll go over labs and also all of the bone marrow biopsy slides I will tote along with me to the appointment.
Frankly, the tests from this week and the visits next week are what will help determine our next step. A few doctors have bluntly suggested we go to Boston, Cincinnati or Texas to get another set of opinions, but I decided to wait for that move until these tests were done.
My stomach is in knots and it is a ll a little stressful.....

It's a good thing that this week will also be filled with happy things! The girls will be promoted from 5th grade this week, and the last days of school will be full of fun- movie day, kickball tournament, graduation and their 5th grade picnic. The plan is for Liz to attend most of the festivities. Good stuff!

****While writing this post, Walt tried to do Elizabeth's daily line care. Her PICC line is occluded, meaning we cannot get blood return and we can't flush saline through the line. This is most likely due to a blood clot. After calling her home health nurse and speaking to my aunt (who is a brilliant nurse), both feel that we can wait until tomorrow morning to have a nurse look at the line, rather than head to the Emergency Room. Ugh. I knew this would happen.