Angry

Tonight I am angry and sad. I feel ashamed for how mad I am and yet I cannot deny it so I may as well just go with it until I wake tomorrow and start anew.
I posted earlier today about how grateful (oh my goodness, how very grateful!) I whenever we visit the Hematology/Oncology office. What a lucky mommy I am to not have a child who has cancer. I cannot even imagine. Actually, I can because of walking it with friends, but it is much different to imagine it than to be living it yourself. How lucky indeed to not have a child with cancer; I think it each and every time I am there.
I am angry though that we have to be in that office. I am angry today because a third bone marrow aspiration has been scheduled for my Liz. I do not like the words "marrow" or "blasts" or "transfusions" or "leukopenia" or "thrombocytopenia" or "anti" or "failure." And I have decided I now hate the word platelets. At least I have a partner in crime who hates the word too, and it's always better to dislike something with a friend, so I'll take that as a positive. Right, Katie?
I just can't believe that we have to do this again. Even more, I can't believe Liz will make a fourth trip to the OR in just three months.
The bone marrow aspiration is being done for a few reasons. First, her other two bone marrow aspirations (BMA's) showed that she is hypocellular. Not good. Her marrow, based on her age, should be about 85-90% cellular. Hers was 15-20%. Our marrow makes our cells, and she should have a better functioning marrow than she does. So, we have known another sample would need to be taken at some point, we were just thinking it would be further out. Second, she is testing positive now for anti-platelet antibodies. Her last marrow sample should have shown that, and since it didn't, but her blood now does, the Hem/Onc doctors think her marrow may have changed and so they need to know what it is doing now. Along the same line, since she has been so much more sick with infections, it is a good idea to see what her marrow cells are doing. So, she'll have it done on Monday morning.
After she gets out of recovery, she will be taken over to the Infusion "Day Care" to have her first round of IVIG. That will take about 2-3 hours to run it's course and then we'll have to stay for a bit to see how she reacts to the infusion. Frankly, it will be a difficult day for her as she had so much pain after the last BMA and the reactions to IVIG after the first round of treatment are not pleasant.
Some tough stuff.

I got even more angry tonight as I drove past her school. I had the thought "this was the year I said Liz and Kate could walk to school", and it makes me sad that isn't happening. I just want our normalcy back.
I have also been upset because Liz has no social life; no friends it seems. She isn't going to school or Sunday School and she isn't going to ballet. There are no support groups for her diagnosis and when she is hospitalized, she is in isolation so she doesn't talk to other kids there. It just isn't right. Her "best friend" bailed as soon as Liz wasn't able to have play dates anymore. Always Miss Popular, her classmates don't call anymore either. They are only 10 for goodness sake and they can't understand or be as supportive as adult friends are to us.
The other day as we were leaving my sister's house, Liz leaned down to Taylor and said "you are my best friend, right Tay?" Uh, my heart sank. Her four year old cousin should not be her best friend. She wouldn't have been just six months ago.

My sister encouraged me by reminding me how great the IVIG should make her feel and how once her immune system gets a jump things will change. Her body will be better and she can get back to school and church and friends. You all know how much Liz thrives on being social.

Angry is a yucky thing to be..... tomorrow is a new day and I refuse to be angry when I rise. Refuse I can do.

Prayers

My praying boy. Isn't this image beautiful?


You all have been so wonderful about holding Liz and our family in prayer. Would you please pray for these friends? Thank you.

My sweet friend Sarah's mom, Sherry, is having a second brain surgery tomorrow morning. Her brain tumor has grown larger and this surgery is necessary. Please pray for Sherry's recovery and healing and also for the family. Sherry has spent her life caring for others (she may have been your L&D nurse at Memorial, in fact, and I know she has touched many lives.

Sandy's father will have surgery for pancreatic cancer tomorrow. Sand herself is a cancer survivor and it seems cruel to have her family face cancer again.

For Ani and Matt Taylor as they face the holiday season without their Ruby. And for Ruby's sister Kate (who my Kate prays for often). Ani is amazing and inspiring to so many during her pain, but a mama's heart is so raw and can only take so much and I pray for her strength.

And for the families of those involved in the horrific car accident I came to only minutes after it occurred today. What an awful way to be reminded, yet again, of how quickly life can be taken.


Thank you friends for all the prayers and support. I value each of you!!!

Wreath

I have told you before how great our church is. If you don't have a church family I encourage you to find one, and if you live in Long Beach we'd love to have you visit ours! Bethany is a special place for families and we are blessed with the children's program and our small group (not so small at about 40 families) of parents of young children is especially wonderful.
Tonight we gathered to celebrate the beginning of the Advent season and make our advent wreathes. It was a nice night and I was happy to have the time with the kids and our friends.



Liz took a big step in wearing her mask in a group. We haven't been going anywhere other than appointments as I have been wanting to keep her out of crowds, so tonight was a big step. Being in a room of 60+ people though, I told her she would have to wear a mask or else stay home. I was so happy she decided to come.







Jackson was most interested in eating cookies and circling all of his sight words in the Advent book.





Isn't she so stinkin' cute?!





Our wreath before....









Liz insisted Auntie help make the bow because I apparently stink at bow making...





...and after





And Kate blows it out until we light the next candle tomorrow night..

I was talking with a friend the other day and I shared that I was ready to turn in my "coupons" to God. I must have earned tons of coupons by now, I am sure.....

Serving is part of my very being and I have volunteered my way through this life from early teenhood, eagerly wanting to serve others.
I truly get joy out of giving to others and seeing others happy, with no expectations of anything in return and I have raised my children to do the same. One of my favorite sayings, posted throughout my home, is "To whom much is given, much is required" for goodness sake.

I have never stolen or hurt anyone. I go to church, I live life a Christ-centered life. I pray and see the value in unanswered prayer. I am a good person.....so I must have some credit stored up, right?

And I want to use that credit - coupons, get out of jail free cards, answered prayers- now please! Surely if my life can't be made easy-street from here on out, He will grant me the health of my child. Surely.

But no. As qucikly as the words came out of my mouth I knew my answer. No. There is no credit or coupon. There is only a plan. A plan that will cause pain and suffering and anguish and frustration. A plan that will cause me to call out how angry I am and demand my credit be accepted. A plan that I do not understand and can only wait to know of how it will be used.

No.

Thanksgiving

Isn't this photo perfect? Halfway through our drive home from Thanksgiving dinner in Newbury Park, the kids fell asleep. Poor Jackson had the girls' heavy heads resting on his lap and he fell asleep with his hands covering his sweet face.


Thanksgiving is one of my favorite things! I love that family
comes together and so many share all they are grateful for.
This year you may think that I wouldn't feel so thankful, but that is not the case.
I have am blessed in too many ways to name and very thankful for all the
wonderful things I have and ways my life is so good. In fact, the
worse things get, I feel even more grateful for things I have.
Grateful, Grateful Me!

Decision

After our UCLA appointment, we set out on a cookie hunt. My sweet friend, Jill (who bleeds UCLA) suggested we go to Diddy Riese for a cookie after one of our UCLA Clinic visit. Oh my goodness....she is so right. These cookies are too good, and it was fun to have a treat after our hospital morning.
I seriously dislike the photo of Liz because she looks so tired and the circles under her eyes make her look sick, but she was gettin' down on that cookie ice cream sandwich, and I'll always love this memory.




It is hard to know where to begin with the update on Elizabeth, as it all seems difficult to put into words and even more difficult to fully understand.

Monday we met with the new UCLA GI doc and though the appointment offered no treatment plan because the doctor wanted to read through Liz's chart notes that I brought her from her LB GI, we both liked her. Tonight she called me, ready to offer some forms of treatment because true to her word, she read and studied the 190 pages of Liz's chart last night. She is recommending we follow the course of treatment UCLA has used for their organ or marrow transplant kids who suffer with recurrent or chronic CDifficile...that is, to do long term one week on, one week off of Rifaximin, in hopes that being on this drug long-term will help keep the CDifficile quiet. I agree with this.
Today we saw the GI doctor here in Long Beach. He is recommending Liz undergo another gastric emptying study (it is pretty cool, actually. Liz eats nuclear eggs and then has images taken over the course of about two hours to identify how the contents of her stomach are moved). This too, I agree with. Both doctors are on the same page with the idea that much of Liz's pain is related to nerve issues. She has had so much manipulation of her insides and has so much scar tissue from each procedure and surgery, that her nerves are super sensitive and going crazy. This is an issue in addition to her motility issues and the CDifficile. Anyway, I feel good about the things being done right now in regards to her tummy- and all that falls under that category.

Yesterday we also met with Dr. Brilliant. I will leave out the A**hole part in this post because that isn't a very polite thing to say and also because Dr. Brilliant played nice yesterday. He was kind to me and even gave me a "let's start over again" smile as he entered the room. I came to play and showed him the assertiveness he wants from me as I challenged him. At one point, he listed Elizabeth's diagnosis' from an Immunology stand point. He said "Liz has...
* IgA deficiency,
* IgG subclass deficiency
* Antibody subclass deficiency
* Anti-platelet antibody positive
* potential bone marrow failure process
* And a great attitude!"
I told him he can add her sass to that list and suggested maybe that is why he and Liz get along. ha! Match point, Dr. Brilliant!
He suggested we start Liz on IVIG (Intravenous Immunoglobulin)therapy. Liz will get pooled blood product given intravenously and this blood product will give her immune system a boost. It sounds great, and it can be, but it holds its own risks; big risks actually. It also causes some not-so-great reactions at first and it is super expensive ($3,000 per infusion for children). Having said that, it is likely to make her feel so much better and her body will likely perk up and be able to fight infections much better. IgA is important for the health of our GI system, and hopefully the IVIG will help even her tummy because currently she is IgA deficient. Also, IVIG has also been used as a form of treatment for CDiff.
The decision weighed heavy on my mind all day and all night, but this afternoon, after speaking to both GI doctors for their opinions, I made the decision to go for it.
Liz will see the Hematology/Oncology doctor on Wednesday who is a well-known, highly regarded Dr. Brilliant in his own right, minus the a-hole part. There is talk that he may want to do another bone marrow aspiration before she begins IVIG, as IVIG is not universal....meaning, each patient has their own concoction of blood product based on their needs. So, Hem/Onc may want to add something to the mix. We'll have to see.
For now, I feel good knowing we have a plan. It won't cure everything and it won't be a quick answer (Imnnuology is recommending weekly IVIG treatments for two years!), but it is something that for the first time in a long while feels hopeful.

Today Liz wore her mask to the GI appointment and then shocked me by saying she wanted to go to the school with me to get Kaitlin and she wore the mask there! By wearing it in front of friends and classmates, I know she was taking a big step. She noted how people stared at her and they asked why she was wearing "that", but I told her most people will only ask once. She doesn't have to wear the mask all of the time, as hand washing is the most important thing in keeping her safe, but she does need to wear it in large groups (of kids especially) and for sure we want her wearing it at Clinic or the hospital.

Tomorrow her new Home Teacher will come to the house for the first time. Peace be with that poor man, because Liz is against the idea from the get-go and upset that she has a male teacher. Choose your battles is what I am trying to teach her, so I am encouraging her to go along with this and save her feist for another issue....weekly two-hour long transfusions, for example!

So that's it. A decision has been made and that weight has been lifted. Of course I have the weight of knowing how sick my Liz is, but at least I am not feeling totally powerless at this point now that we have at least a bit of a plan.

For those who continue to pray for us and encourage us, thank you! Please keep praying.

190

190. That is how many pages I stood copying at Kinkos...all from Elizabeth's records that I will be trekking to UCLA tomorrow morning for our appointment with a GI doctor there. 190 pages from her GI chart alone, not including all the years she has been born or anything other than test reports and notes on things having to do with her stomach. It is one thing to live this stuff, and it is something else to have it presented to you in paper. Until the last year and a half, we would casually go through a scope or surgery. She'd have it done and we'd get past it. Yesterday I took the time to sit down and read through the 190 pages...and I cried. I cannot believe all that Liz's little body has gone through during her short life. And the surgeries; I cannot grasp, though I have stood watch over her before and after each one, all the times the surgeons have cut into her and manipulated her little tummy. These pages hold the story of her 13 scars. I stopped counting the number of scopes that have been done after 12. The doctor's words were what struck the most. Words that may have not been said to me, or if they were I let go because who can dwell on all of that or focus on it all? You'd go crazy if you did.

And yet now, I must. Until we get the right plan and diagnosis for her, it is no longer alright to let things go so easily. I have to focus if I am going to continue to advocate for her and help be the go-between for all the different doctors involved.

My stomach is sick for tomorrow. We will met with the new GI doctor at UCLA first.It is true that we have a new GI team here in LB now, but UCLA needs to see her too since a fecal transplant is still on the table and they would be the doctor to do such a thing.That appointment I am not nervous about as, let's face it, it will mostly be a meet and greet. There is no way the new doctor can soak Liz's whole case in during the first visit. I'll leave her the 190 pages and ask her to please help us.

I am most nervous for our afternoon appointment with the Immunologist. I had a heated conversation with him about Liz while she was in the hospital. He is conceited, arrogant, opinionated.....and brilliant. I need his brilliance, so I'll take the rest. He wants me to be assertive and forceful (he told me so in his own wonderfully cocky way, and my inner-strong woman wondered how he must speak to his wife), so I am preparing myself to go in there and show him how I can go head-to-head with the big boys.
That aside, I am most sick over what we may hear. During this appointment, we should hear all of the results from the tests and re-tests that have been done. I know many of the results already, and tomorrow Dr. A hole-Brilliant will link it all together for us and may even offer a diagnosis. We should also hear about his plan for therapy for her. Walter moved mountains to be able to get off work for this appointment and I am relieved he will be there to take it all in with me.

Please pray for us tomorrow. For Elizabeth's tolerance during a whole day of appointments. For my strength and patience. For the wisdom of the doctors. And, for us to be at peace with any news or care plan presented.

Beauties of Mine

Beautiful Kate with her beautiful plate....





And Elizabeth...






Two hours later. She looked good today! Last night she worried Walter and me because she was so pale and actually appeared almost gray. She looked better this morning, though as they day has gone on, she looks exhausted.





This afternoon was time just for girls. Walt was at work and Jackson was with my parents and so the girls and I had time together. My parents had been planning for weeks to take the kids to the Bass Pro Shop. They have gone before and the kids think it is so fun there. During the holiday season, it is even more special. My parents and sister raved about it....free carousel rides, gun shooting, games, pictures and time alone as a family to talk to Santa, and free kids meals in the yummy restaurant. All free! Anyway, it has been in the plans for a few weeks, but Liz is just too tired to walk around for a whole afternoon and has had more nausea, so it was not a good idea for her to go. She was really upset as she likes my parents WAY more than she likes me.
I decided to send Jackson and take the girls to Color Me Mine. That idea seemed to perk Liz up and we had a great time painting and talking. Not once did we mention anything medical or about school. Nice! After painting, we went to have a sushi lunch at one of our favorite sushi places which we've been craving. Time with my girls is so precious as I know the years pass quickly and soon they will want more time away from me than with me.

Guilt

I am going to use this photo for my Mom of the Year campaign....



Guilt. A mother gets to experience so many precious feelings because of having a child....and then there is guilt. There is always guilt, isn't there? Guilt for not sending him off with a sweater on a cold day. Guilt for forgetting to pick her up from school on a minimum day. Guilt for not being able to be two important places at once. Guilt if you are a working mom, guilt if you are a stay home mom. And if you don't think of the guilt on your own, they will surely remind you...."you love him more!", "you take care of her more when she is sick!". Blah!

This afternoon Jackson and Kate had their dental check up. I always pray and cringe as the Dentist looks Jack's teeth over. Two years ago, in a matter of six months, Jack went from perfect teeth to needing three baby root canals and seven fillings. What in the heck?!
Today he had NO cavities...yay! He did however have one tooth fractured beneath the gum line and another infected. The best part...wait for it....he has an abscess on his gum, under his lip. An abscess, with puss oozing(the dentist was sure to point out that it probably doesn't hurt as much as it did now that the puss has started oozing. Uhhh!)! Right. Where. I. Should. Have. Seen. It. To top it off, the dentist insists that this could have only happened due to a fall or something hitting his mouth. His tooth literally crumbled as the dentist began to remove it. Awesome. Guilt!

All I could do was think of how he could have hit his mouth so hard without me knowing, and rack my brain wondering if he's told me that he has been in pain. I do remember a time two weeks ago when he said his mouth hurt. I did nothing because he didn't complain again.
You know where I am going with this. I begin to question how well I am taking care of everything and everyone else when I am so distracted with Elizabeth and her daily care. If I am realistic I remind myself that I am not a freak-out mom, I take it easy when the kids get hurt or sick. So, I don't know if I would act any differently if I didn't have sick Liz. But, if I am honest with myself I will also admit that I have overlooked things or let things go maybe too long because I am so busy with Liz.
Guilt.

Thankfully, my Jackson West doesn't make me feel any guilt. Brave, sweet boy. He was super brave and took the extractions like a champ.
It hurt my mommy-heart more than it hurt his little mouth. If only he'd shared his laughing gas with me. : )

Purple

Today I wore purple. I rarely wear color, as most of my shirts and sweaters I own are black or gray. Elizabeth has asked me more than once if I am "going Goth or Emo." Umm, first of all, how does she even know those terms?!
I managed a Victoria's Secret store and you may have noticed that those who work there are always in black....it is the dress code. Don't you know that the staff wearing black makes all you bra-buying girls look fabulous compared to us, Dahhhhhlings?! Anyway, for years I wore black, black, black....and I still do.
Not today, though. Today I wore purple because I look like crap! I have dark circles under my eyes that are dark enough and wearing color I thought would lessen the reactions of people. Especially the Pediatrician. Kate and Jackson had their flu shot (and pneumonia shot for Jackson) and I wanted to show the doctor how fabulous I am recovering from our long hospital stay. It didn't work, even in my purple.

Other things that perked up my day (the dark circles remain):

*My Jackson saying "Hawaiian" It is perfectly pronounced "Ha-he's-lyin" by him and I asked him to repeat it about 5 times just so I could giggle.

*Going with the kids to purchase yet another fish and watching them choose the perfect one for our family. For our family; don't you love it?!

*Laughing with Liz as we remembered how, as she was waking from anesthesia, she kept saying "What you talkin' 'bout giiiiirrrrl?!"

*Kaitlin's hugs....when her friends aren't looking.

*Looking forward to being able to watch tv with my husband when he gets home from work. I miss spending time with him during all this chaos.

And finally, please pray for Elizabeth. She had blood in her stool last night after a week of not having any. She also has a sore throat and is beginning to have a cough....blah!

Update

Elizabeth and I left the hospital late Friday night! Her stubbornness, strength and even a bit of pouting left the doctors working to get her out of there at her deadline. She said Friday was her limit, and Friday it was.
We are both exhausted. Liz because she is still sick and recovering, and myself because ten days at the hospital is grueling. I joked with Megan that the military should use a hospital stay as training for having to stay awake for days on end. It always takes days to feel normal again after one of our longer hospital admits.
You can imagine what the house looked like when I got home. Walter's idea of keeping up with chores is different than mine, for sure! Plants died, laundry had piled up and the best thing was a lone piece of broccoli sitting in the microwave.
Still, a messy home is a small casualty considering how well Jackson and Kate were cared for during my time away. My sister is amazing and made sure they were fed well and loved on. Our moms helped too with school pick up and volleyball practice, and the kids enjoyed a day with my dad. A friend picked up the slack when I forgot about a minimum day schedule for the school and Kate called me wondering where her ride home was. For not being able to plan ahead, things actually went really well over the ten days.

I am sure many of you want to know what is going on with Liz. It is so complicated and the truth is we still need answers. We were able to leave the hospital for the weekend (she will be re-evaluated tomorrow) because her lungs are better, her pain is being managed and bleeding is better as well. Still, the puzzle is difficult to piece together and in true Elizabeth's body form, many pieces aren't fitting together. It was important to get her home though instead of sitting around waiting for results and for diagnosis'.
She had an hour of retching and nausea yesterday and I am struggling to get her to take in as much as she needs to, but for now she is doing well at home.

Here is what we do know, or at least what is being sorted out:
* The video from the capsule endoscopy will take about a week to sort through. You can imagine how tedious it must be for a doctor to go through eight hours of video from continuous snapshots of the inside of Liz's intestines, colon, etc. Those results are super important considering all the doctors are convinced it will show something they've been unable to see via colonoscopy and regular endoscopy.

* The results of Liz's colonoscopy look good. Pathology from biopsies also look good. This is both great to hear and incredibly frustrating to hear....this is why:
In order to have CDifficile, one must have inflammation of the colon. The biopsies are what prove whether there is inflammation or not.
Given that Liz does not have abnormal pathology of the colon, the GI team is saying she does not currently have CDiff, even though her symptoms are what they have always been with CDiff and her stool is positive for CDiff. GI is saying what I already have heard before, that her body has colonized CDifficile; that it is ever present in her gut at a level that is abnormal, but this latest bout is not truly an active CDiff toxin infection based on the colonoscopy results. This is BS to me. Though I can understand the reasoning and medical justification, I KNOW that she has two weeks of no symptoms and a three negative stool samples in October. Then, she started with the symptoms again and stool samples are positive for Cdifficile.
Now, the Immunology team is asking the GI team to consider that her body may not be able to create the pseudo membrane process in her colon due to all of the abnormal lab work she has had proving that she has either autoimmune disease or disorder. Meaning, she may be incapable of having abnormal colon pathology and that would throw the GI's idea out the window.
See, I told you this was confusing.
While they sort that out, we stopped the antibiotic for CDifficile and we'll see what happens.

* Her yellow skin and eye color is going away. It was a reaction to the new medication. Only less that 1% of patients get the reaction..... and we know, if it is a possibility, even less that 1%, Liz will be that %.

*Her lungs are better! Oral steroids helped and now she has a few inhaled steroids added. She also has started a treatment that induces coughing to keep her upper airway clear in an attempt to keep her from swallowing mucous that leads to infection.

* She was finally able to get her Flu shot as her lungs are better and she hasn't had a fever. She needs the Pneumonia vaccine, but labs show that her body has rejected other vaccines before, so we are waiting for a different vaccine tomorrow.

* She has many abnormal labs. the doctor is still working to understand it all and waiting for more results to come in so I will refrain from sharing everything now as it is overwhelming and actually sounds very concerning and even scary. I would rather wait until we have a firm diagnosis before sharing. We will most likely have her seen by a Genetics team and have Kate tested too. Some have asked if I am referring to Lupus or Arthritis....I am not. Liz has cell lines that are not functioning and antibodies that are attacking cells. Her NK (natural killer) cells are low and her immune system is not functioning properly because of all of these things. For that reason, we are pulling her from school, at least through the flu season.

I hate blog posts that are negative and seem impersonal, but many have asked for facts, and so here you have it.
For all who are wondering and praying, please know how much your support means to me during this time. I am grateful for you. Truly.

All is for You

Monday night was an experience I have never had before and likely won't have again. In fact, I think few people experience in their lifetime what I was blessed with. To be in a room (or rooftop) with dozens and dozens (hundreds?!) of people who were present with the sole purpose of supporting me and my family.....how often does that happen?
People from my past - we're talking decades past-, friends of friends, past teachers, pastors, family and even strangers, were all there for us. Poly High had a mini reunion that night...it was fun to see all of you. There was one point where I looked around the crowd and just smiled as I took in each face and the memories I have of every one of them.
As my sister said, Long Beach is so big, but that night was an example of how small life can seem; how tightly knit a community can be when they join together to support someone or something.
Our family has a tradition of reading the Dr. Seuss book Happy Birthday To You. In it there is a line that reads " All of it, all of it, all is for you." That line kept repeating in my mind as I drove away from the restaurant, headed back to the hospital to my Elizabeth. Gosh, at that point money was the farthest thing from my mind and I was just so energized from all the kindness and support the night brought! That night helped keep me encouraged for the next five days of the hospital stay.

We were sad that Liz was hospitalized and not able to join us for the night. I have shared how we were careful about how we explained the purpose of the evening, not wanting for Liz to feel that she has contributed to a heavy financial burden for us. Still, she knows that people who care about us got together and some gave us money....and she was sad to miss it. Plus, if there is a chance to get together for a "party" and maybe even wear a new outfit, Liz is all-in.

Jamie and Kemery were amazing in how they organized the event. They used many connections to reach out to people and spent so much time making the evening a success. We are so grateful to them.
And we are grateful to each of you. Whether you sent a donation, attended the fundraiser or even just thought of us, we appreciate you. I cannot get over the donations that have been sent and the sweet notes of encouragement that accompany them. The ones from strangers just floor me.

A friend said that the amount is such a drop in the bucket compared to our hefty medical bills....but any amount is so helpful. I will cringe a little less over the next couple months as I make our co-pay at each office appointment and as I am charged for this month's prescriptions.

Thank you, thank you.

Just so you know....

"You want me to swallow that?!"
Elizabeth is amazing! She swallowed the capsule endoscopy on the first try! The pill is huge (25mm long and 10mm round looking down on the top). It has six LED's and a camera and radio transmitter....pretty amazing stuff. She wore a battery pack attached to 10 leads that were placed on her torso for eight hours and over the next 12 hours she should excrete the pill. We will get results in a few days.

Today was a good day as far as a day in the hospital goes. Liz had another guitar lesson with the music therapist and also was able to see a therapy dog that she has been asking for. Jackson came to visit for over two hours and I was able to take a walk with him, cuddle with him and spend some time kicking his butt in a game of air hockey in the playroom. After school the girls' wonderful teacher brought Kailtin to the hospital so that we could visit for a while. It was so good to be able to see my babies and I know Liz was energized by their visit. She is exhausted from her busy day and fell asleep as soon as our last visitor left the room.

Tomorrow is the deadline Liz gave as her limit to her stay here. Her exact words were "Just! So! You! Know!, Friday I am busting out of this place if we haven't left before then!" Last Saturday it seemed a crazy thought that we would still be here at this point, so I agreed with her. I should not have done that! She begins to cry as soon as she starts to speak about discharge. I don't know when we will be able to leave. Many things can be managed outpatient, but she needs to start eating better and get off of iv fluids. She also needs to prove that she can maintain her weight. Then there is the issue of whether or not they are going to do any immunoglobulin therapy now. She will not be discharged tomorrow....but I don't know how to tell her that.

We have decided to pull her out of school for the next few months. It is the best thing to do due to her decreased immunity (more on this later as labs are still coming in, but she definitely has some kind of immune disease or disorder. We have also learned that her antibodies are attacking her cells; her platelets for example). She asked if she could still have recess if she is at home...silly girl. I have embraced the idea of how lucky I am to have all of this time with her and I am going to make the best of this.

Keep praying for our girl. I am grateful for all of the support and prayer!

Eight Days

It is hard to believe we have been in the hospital for eight days. Liz and I are both homesick and I miss Kate and Jackson so much. Eight days is forever for Liz as she's been in isolation the whole time.

This morning Liz had her colonoscopy and biopsies. How many times I have had to walk away from her in the OR as I watched her start to fall asleep, having to trust that the doctors and nurses would take care of my baby. Walking away from your child when they are sick and vulnerable goes against every bit of a mother's instinct.
While she was in the OR I started to cry for the first time in days. Thinking of how many times I have paced the halls of this hospital is actually unbelievable. When will I stop having to be here with our girl?
Liz did great during the procedures and though her last two OR visits have resulted in a rough recovery, this time was great! She had much less pain and nausea and woke well; kudos to the team in there today. Labs are being expedited and we should have biopsy pathology back tomorrow at about 1:00.

Tonight Liz is very upset..... she is frustrated as she is going through yet another clean out- her fourth this week- (it is best for her to be rid of any stool for tomorrow) which is uncomfortable. She is also terrified at the idea of swallowing the capsule camera tomorrow during the Capsule Endoscopy. She is great at taking pills, but this camera is a BIG pill and she is afraid she will choke. She is going to need her mind-over-matter strength tomorrow morning to get that done.

I am exhausted and now totally distracted, as I just heard that Jackson wet his pants at school today (which he has only done once before....during Liz's last hospitalization), so I am going to keep this post short. Thank you for your prayers!

Update

You would think a person who is stuck in the hospital room all day (and wide awake for most of the night) would have plenty of time to journal a blog entry. That is not the case, though. The hours pass quickly and Liz's needs as well as the constant visits from doctors (she has so many now that it seems as though there is a visit each hour) leave no time.

It feels like too big a task to update all that has been going on over the past couple days. I cannot find words to put it into the right form, so I will simply list what I can. There are a few things, including a specific immune-based disease, that are possible diagnosis for Liz. I have decided to keep quiet about those unknowns until there is a reason to talk about them. At some point and with certain possibilities, it is just too much to talk or worry about unless we have to. I cannot worry about the "possibles or even the "partially positives" anymore. I will drive myself crazy if I do.
*The meeting was good. Walter was able to be present as well and the two of as sat around the huge boardroom table with a room-full of physicians. There was a lot of ego in that room, let me tell you! Ego aside, they treated us with much respect and I was proud of myself (Walt said he was, too and I even got a nod of approval at one time from the biggest Ego there) as I debated, challenged and followed throughout the whole meeting. If I am going to be in this situation, I better do my best, right? And doing my best means not backing down and finding my backbone....even in a room of doctors.
I did fight tears at one point as I sat listening to them all and it struck me that all of the talk, all of the percentages and numbers and counts, all of the acronyms and finger waving and raised voices.....all of it was about Elizabeth. They were all talking about my daughter. It was an in-my-face reminder of how serious this has become.

Walter was a bit discouraged after the meeting, but I was not. He lives this with us, yes, but as he works, I am the one who knows all there is to about Elizabeth and I understand how intimidating and scary the meeting was for him.
I left firmly believing the following... these doctors, whether from truly caring about Elizabeth or from intrigue alone, are invested in her case. I know enough to understand that "rare" and "complex" and "uncharted territory" equals interest and a desire to solve a problem for these physicians.

So, in short, these are things that were talked about or have happened:
* Yet another Colonoscopy with biopsies tomorrow at 2:00pm
* She is yellow. Not highlighter yellow, but definitely a soft hue of yellow. Her liver counts from late yesterday afternoon look fine, though. She will have counts again tomorrow morning. I do not like yellow :(
* Thursday morning she will swallow a tiny camera and for 8 hours it will travel her body while taking snapshots of her inside. There is an area in the stomach that cannot be seen by endoscopy or colonoscopy so this "swallow endoscopy" will allow us to see those areas.
*Her immune system is a mess. There are many lab results that have shown many abnormalities. Some are very concerning, actually. It is confusing to understand and even more confusing to explain. I will explain more later when we have even more tests back. Vaguely, she is IgG and IgA deficient. Her cells are not functioning properly. Her natural killer cells are low (you want these higher as they help fight infection). Her NBT test was abnormal.
The next couple days will reveal what they need to decide how they will treat her immune deficiencies. Kaitlin will most likely have blood work done too as the doctors are using her as a controller in some of their testing. As identical twins, there are fascinated that Kate hasn't presented as Liz has.
* UCLA has been called again and fecal transplant is yet again an option. Many of you have asked why this hasn't been done yet, especially since it has been in the News so often lately. I share your frustration, but I assure you there are reasons why this option hasn't been used yet. As much of a miracle procedure it sounds like-and has been for the few in the world who have had it done- it is major. Liz is unique too because of her immunity and there is extra concern about how her body would react to a donor's bacterias.

Please, please, please know how important your support and prayers and kindness is to how we face this all.

Michael's Monday!

Yesterday, Liz threw a fit! She packed her suitcase, refused all meds and breathing treatments, tried calling people for a ride, and yelled enough I was sure we would draw a crowd. She had decided she was done with the hospital and she was determined to escape.
She did finally calm down and her things were unpacked, though there have been many tears for home since. We are still in and I have no idea when she will be discharged.


She is super disappointed to know she will miss the special event tomorrow night! I do not want her to understand just how much her illness financially effects us; I will not have her share in that burden in any way, so I have not told her that tomorrow is a fund raiser. In fact, she has not seen the two news articles about the evening because I don't want her to read about the medical bills right now. She instead knows that tomorrow is a special night where people who care about her- about us- will come together. She knows this....and she is sad to know she will miss it. I will be there as long as she is well enough for me to leave her at the hospital.

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We have been so touched by how many people have embraced the event and we look forward to seeing you there!

Licking wounds

Tonight I could not breathe. I felt trapped, I wanted to run, I could not force my tears to stay away and I even had a moment of feeling like I wanted to quit. Mostly though, I literally could not breathe.

Elizabeth has been privy to 99% of conversations about her care. It is her body afterall, and with some issues we know will stick with her a lifetime, it has always been my belief that she needs to have an understanding of her body. I also believe it gives her some kind of power. So, I rarely ask her to leave the room when a doctor is speaking to me about her. Most often she goes to her "zone" and ignores us, taking in bits of what she chooses to and later (maybe days or weeks) may ask me about something she heard talked about.

Tonight I had a long conversation with a doctor, in Liz's hospital room, that got very heated and I wish she had not been present for. It left me without breath and feeling caged. I can't go into detail about it now because it is just so long and upsetting, and that alone is proof of why I wish my Liz had not witnessed it.

The tears and pain the conversation provoked though, actually gave way to a sweet time with my girl. After I composed myself and time had passed, Liz asked if I would wash her hair. I can't put it into words, but the act of washing her hair at the sink and then holding her in my lap afterwards was so comforting to me. It made me think of an animal who, after being hurt, is licked clean by its mother. On top of the ordeal with the doctor, Liz and I had already had a rough day. In the early afternoon Liz decided she was done with all of this and all of us. She literally packed her suitcase, refused medications and care and yelled, hit and threatened to pull her iv out. For hours she threw a fit until she finally collapsed and fell asleep. Obviously, "licking the wounds" was reversed as I was washing her hair, but it was theraputic. As I sat brushing through her beautiful locks, she leaned into me and said "Mama, I am sorry about earlier today and for hitting you." I answered "I know you are. I am sorry you had to hear my conversation with the doctor." She then said "I know you are"
I feel so honored to be able to be the one caring for my child when she needs me most. The simple act helped to remind me why I fight so hard for her; why I will challenge the doctors and even battle them. They have degrees and their white coats and knowledge that I do not..... but I am a mom; I am Elizabeth Claire's mom and I will fight for her. I have an instinct that will protect her and allow me to stand strong and firm when one might expect me to cower or give in. I gave her life and I would give my life for her.... nothing is more powerful than that and nothing will keep her more safe than that.

Torn

I am torn. In many different ways today, I am just torn.

It is awful to feel like I am being pulled in different directions. Kaitlin and Jackson have been crying for me, pleading for me to come home or at least offer the promise of a date we will get out of here. I cannot do either. Kate tries to hide her tears because her maturity now allows her to know that her tears mean I will feel torn and she wants to spare me. So, I encourage her to cry to me if she must, all the while feeling her pain as she does. The tears are more than just missing me, they represent the change in routine that Kate especially thrives on as part of her very being. They represent the worry they have for their sister, something we strive hard to not allow to happen, but as the kids get older, they understand more of what goes on. It is so important to me that Kate and Jackson not carry the burden of their sister's illnesses or any feeling of responsibility in her care. They are kids after all and I won't allow them to feel a weight of this....and yet, it does creep in no matter how much I wish it would not. When you love someone, when you share your life with a sibling, you feel their happiness and you feel their pain. That is life and I cannot protect them from it.

Elizabeth has these doctors running in circles. In my mind, figuratively they are scattering mice, bumping into each other as they chase the cheese. One says go left and another says go right and no one ever gets the darn piece of cheese! Even the mice are torn in differed directions.

After 7 days of a 14 day course of antibiotic for the CDiff, she has not had change so we are at a point where we need to change meds. Remember, there are only a few meds used to treat CDifficile and since April, only one has had any effect.....and that one is now not treating it. We face the decision of going the full course and taking it for another 7 days to meet the 14 day course, or jumping ship with it because it hasn't worked yet and we don't want to use it if it is not working, mainly because we don't want her body building an immunity to the drug in case we need to ever use it again. Confusing, I know. I give the final "okay" for these drugs and that decision alone leaves me feeling torn.

Within the next couple days a BIG meeting will take place. The case manager is putting together a meeting where all of Liz's doctors- pediatricians, Infectious Disease team, GI team, Pulmonary, Immunology, Hematology, Surgery- will all be there. Lookey-loos will be there too to see "CDiff girl". We are waiting for a few doctors to get back from a Cystic Fibrosis conference so that they can attend the meeting.

It was also talked about today that it may come to us transferring her to UCLA (Walt gave me a look that I knew meant he would rather pedal her down the 405 freeway on a bike than pay for an ambulance ride, but he refrained knowing his sarcasm is enough to push me over the edge right now). That too will be decided in the next few days.

Please, please pray for Liz! I covet your prayer and the prayers of strangers. I will ever stop asking for prayer on the behalf of my Lulu.

Simply, overwhelmingly torn.

Article

Below is the link to a article written about our family for the Grunion Gazette. A few quotes are altered a bit, but the intention of the writer was from a good place. We are grateful to Jamie and Kemery for all of their work on the fundraiser!!


http://www.gazettes.com/to_do/restaurant-reaches-out-for-suffering-youngster/article_836598dc-0596-11e1-96da-001cc4c002e0.html

Admitted

This cute giraff has a soothing sound machine inside. I bought two of them months ago knowing I would give one to Liz the next time she was admitted. The second one I thought I would give to a friend, but Kate is so sad Liz and I are at the hospital, I thought she'd get some comfort in having one.


It is 11:00pm and things have finally calmed down enough for Liz to try to sleep. She was admitted to the hospital at 5:00 this evening and it took this long to get her orders written, xrays done and finally her iv started. Phew! Luckily, she was a direct admit which means the doc had her admitted from home rather than having to go through the ER. I am so happy about that because I hate it down there! We avoided the ER mess, the hassel of that extra step and the $200 ER co-pay.

Liz is here because of a few reasons..... her pain needs to get under control, her lungs still aren't clear after 10 weeks, yesterday's chest xray showed a distended colon, and the GI and Infectious Disease teams are thinking of trying a new mix of drugs for the CDiff. Basically, things are getting out of control.
I hate that Miller Children's does not have every patient room as private. Who in the world came up with the idea of having sick people share the same space? It is awful! Luckily, Liz needs an isolation room so we don't have to deal with strangers, extra germs or privacy issues. Actually, we have to deal with all those things in here, but we don't have a roommate and for that I am grateful.

Elizabeth is feeling very out of control herself, I can tell. She is freaking out about germs, refusing to use the bathroom here (she fially did), refusing to get into bed because she said someone at one point had died in it (she finally got in), refusing to take her meds unless she was promised a puppy (I said I would talk to Walt), and then, when the nurse asked her to rate her pain on the number scale, Liz told us to guess it because she wasn't going to tell us ( I wanted to scold her, but I was secretly laughing inside at that one!).

Liz finally has fallen asleep....so off to my awesome (not at all!!) chair bed. Please pray for Liz and if you see Kate or Jackson around town please give them some extra love, too.

Vicious

Again I find myself full of thoughts, but just too tired to put them into words. If you are reading this, if you are hoping for an update because you have concern for Elizabeth; if you are praying for her and read this blog to know our specific prayer requests....thank you.

Elizabeth is not doing very well and I am concerned she will be admitted tomorrow. She is in much pain from the CDiff and just so uncomfortable. She asked for Codeine twice today, which she never does. Tonight she also begged for Zofran (anit-nausea medication) even after I reminded her that she wasn't due for another dose quite yet. That alone speaks to how bad she is feeling. Today was day 5 of the 14 day antibiotic to hopefully kill the toxin, but her symptoms are no better and she is actually feeling worse.
Surprise, surprise, her stool labs confirm the CDifficile infection is back. A good friend of mine, Katie Bennett, called CDiff "vicious" - that is a perfect word for it! It is mean and it vicious. It has taken residency in Liz's poor gut and is putting her intestines and colon through hell. Vicious is right!

Her cough is still gross and she winces in pain each time she coughs or inhales deeply. She had another chest xray today but it didn't show pneumonia. Given that she's had the cough for 10 weeks now, and her lungs don't sound clear, she'll have labwork done tomorrow to check for a strain if infection not detected by xray. Fantastic. Vicious.

So that's the update..... Elizabeth's latest summed up in two short paragraphs. You'll have to read between the lines to hear all I am leaving out- the page-long paragraph I could write if I wasn't feeling so discouraged.

A side note**** the amazing fundraiser planned for our family, is next Monday night, here in Long Beach. Jamie and Kemery have worked very hard on this and we are just so grateful! The Grunion Gazette is running a story on us/the fundraiser, and it should run tomorrow online and Thursday in print.

Thank you for caring, praying, wondering and following.... I appreciate you.