6!!!

[This photo is a year and a half old}


Elizabeth has gained about six pounds in the last seven weeks! This is huge!! Extra caloric drinks like Boost and Ensure are difficult for Liz to handle because they contain so much sugar and dairy...things that make her sick due to her Dumping Syndrome. The in-house nutritionists at the hospital and her doctors have ordered many different kinds of the drinks for her, but she has trouble with them all. Besides, it is daunting for her to be told to drink so many of them a day in additon to eating her usual meals. We've tried adding calories to her meals by using oils and powders, eggs and protein, but she often has a difficult time with quantity.
She is now on an appetite stimulant called Periactin, which has been working well because it is increasing her hunger in a way that has her eating small amounts many times during the day (and usually 10 minutes after she has been tucked into bed for the night...grrr!). This prescription medication is usually given as an antihistamine for allergic reactions. A side effect of this medication is increased appetite....the reason it has been prescribed for Liz. Even with her nausea and retching, the Zofran helps with that and allows her to feel hungry after the nausea has passed. Being an antihistamine, Periactin makes a person drowsy. Liz tried his medication a few years ago, but she was just too tired on it. Her doctor adjusted the dosage and for now the fatigue is manageable. I am not sure how she'll do once school starts, but even if she has to be pulled off of the drug because of being too tired, she's had success with weight gain and that makes us happy!!

Fair

Elizabeth, speaking to Spencer during one of his hospitalizations.


Elizabeth has not had a close friend who has faced hospitalizations, procedures and serious medical issues.....until Spencer. She cared deeply for Spence from the first time she was told about him; asking questions, praying on his behalf and having genuine concern for the sweet bald-headed boy she knew had cancer. For months and months she spoke of him and appreciated any commonality she knew they had. It was the first time she felt connected in that way to a person.
Amazingly, miraculously, Spence is in remission. All scans and signs show that he has beaten stage IV cancer at the big, bad, brave age of 8.

A few nights ago I was folding laundry. Liz came to me and said "how much longer until Spencer is better?" I reminded her that he is better and that he will be watched carefully for years, but right now he is better.
She looked at me genuinely confused and said "But that's not fair!"...and she started to cry. She cried and cried and said "I deserve to be better, too. I have done enough and I should be better! When is it my turn?!"

How do I answer that?
Of course she isn't keeping score of who "gets to be" well and who does not. Of course her little ten-year-old-self cannot comprehend how much more devastating cancer is than some other illnesses; how much worse of a diagnosis it is than hers. She has no idea. What she does know is that her friend was sick and now he feels better....and she does not.

I thought of this today as I watched a mother with a baby at the hospital. She was, in Liz's terms, "freaking out." Her baby needed a blood test and as she walked past the children in wheelchairs and the other mothers holding babies, she seemed to look right through them. She ranted (loudly!) about how her child needed "the best" lab technician and how her child should be seen "now!". I wanted to shake her. I wanted to ask her to look in the eyes of every mother she was passing because in those eyes she would see the same thing- frustration, sadness, hope, eagerness, anxiousness, weariness. I wanted to tell her to calm down and try to accept the number one rule of being in the hospital with your sick child.... nothing about it is fair. Nothing. You cannot keep score. You can advocate for the best for your child, but you can't keep score. Geez, life doesn't keep score.

As Liz noticed the woman and commented, I simply told her that the mommy only wants her child to be better and soon she will realize she should just go with it because it is better to go with it than it is to fight it. It was such a general comment, too big for my Liz. Butjust as I was going to elaborate so she could understand what I had just said, she nodded and said "Yeah, she just wants stuff to be fair, but sometimes it's not your turn for stuff to be fair"
Oh, my smart girl.

Famous Poop

Elizabeth has always had an amazing way of self-soothing. I know I have mentioned this before. Even as a toddler, she was able to put herself into another place mentally. You would swear she was asleep or had been given a sedative, but in fact she just knows how to calm herself almost as if in a hypnotic state. It is amazing what out minds and bodies are capable of and how we can instinctively get through things.

Sometimes though, it is best to just play possum and pretend to be asleep, while cuddling with your daddy.....


An hour and a half into the appointment, while we were waiting for the rest of the Infectious Disease team to meet, Liz went from hiding under her sweater to truly falling asleep. We tested her by loudly commenting that her rectal exam was going to begin (there was no rectal today)....she didn't open her eyes or move, so we knew she was really asleep. Sweet girl.




This morning we went to a land far, far away..... not really, it was only UCLA. For us though it felt like a different world. We can walk the halls of Miller Children's with our eyes shut and we know almost everyone by name. CHLA is even a bit comfortable for us, and Cedars-Sinai is too. We have never been to UCLA before and it felt awkward to be somewhere new. We were treated wonderfully there and I am glad we made the decision to follow through with seeking the opinion of their Infectious Disease team.
Turns out that though the people there were strangers to us, Elizabeth had already made herself known, just by her chart notes, and her case has already been the topic of discussion there. I joked and told her she has famous poop.... she did not laugh.
Our appointment was LONG. The doctors spent so much time with us and then met with a colleague, discussed Liz, and came back for more discussion. There is much to report, but it is lengthy and a bit drawn-out, so I will note the most important things.
First, the doctors we saw have only had one other case like Elizabeth's, meaning one case where the CDiff lasted so many months and lived through so many rounds of heavy antibiotics. That case was a boy who had had a bone marrow transplant and then developed CDiff. Because of his immune system and other factors, his body had a hard time ridding the CDiff.

We have a few options for Liz, in the opinion of UCLA-
1. We can wait and do nothing and see if her gut will restore itself; if her good bacteria will overpower the CDiff and the toxic CDIff spores will back-off, giving way to the healthy bacteria. Oh, how this is our prayer!
2. She can start on Difficid- a new drug, cleared by the FDA in April. It has only been tested in adults and is obviously very, very new.
3. She can go back on the Vancomycin and we'll see if her ringing in the ears returns, which would confirm Ototoxicity and she would then be taken off the Vanco. immediately.
4. Though she developed a rash and itching while on the Flagyl in April, a clear reaction, we can try the Flagyl again and see if she has te same reaction. This carries it's own risk if her reaction in April was truly an allergic reaction to the Flagyl.
And finally
5. We can do a Fecal Transplant. A fecal transplant has never been done at UCLA. It is widely practiced in Europe, but not in the States. While it is an easy procedure to do (administered through and NG tube in her nose, down to her gut), it carries its own risk. The doctors told us it is on the same level as a Tissue Transplant, so there are risks of rejection, infection and given her immune issues, not the first choice. It is absolutely on the table though, and the UCLA pediatric doctors have consulted with the adult infectious disease and gastro. docs.

Today she had a stool sample collected. UCLA has a newly developed way of testing for CDiff. They actually check DNA and the quantitative toxic spores. We should get those results this week. If she does not get much worse before those results are in, we will wait for those to decide our next step for treatment.
UCLA also recommended we see a Gastroenterologist there for a second opinion as they agree with several doctors here in LB in thinking she has a GI disease and needs further testing. This is a totally separate issue from the CDiff, but finding a root disease would help in explaining her immunity issues and fixing the immunity issues will help in treating the CDiff. It is a hellacious cycle. Round and round and round we go with this all.

Her body is fighting the infection so hard. We just keep praying and cheering on her little tummy...hoping that she will finally kick this. For now, she'll have to keep going and we'll have to wait.

Positive

The word positive has been used much in our lives lately.... Liz tests positive for cdiff, her stool tests positive for blood, I am positively indecisive : ).

Well, I made a decision. Elizabeth's Miller Children's Infectious Disease docs advised and prescribed a new drug for her to start on Wednesday. My gut told me to not have her start it....at least not yet. On Thursday she saw her GI doctor because she has been having more stomach pain, different than it has been with the infection, and retching. His opinion is that she should not start the new antibiotic until we see the UCLA Infectious Disease team on Monday. So, with that confirming my gut-feeling, we are holding off. I hope it is the right decision. Last night and this morning have been pretty rough for her and I pray it is not her body reacting to being off all antibiotics for now 5 days.

As for the increased pain and retching, those symptoms and her examination lead the GI doc to think something is wrong with her Fundo. (short for fundoplication- the surgical "knot" she has where her stomach and esophagus are tied together, purposely done to keep her awful reflux under control). The Fundo has been re-done 4 times and though it helps her, has been nothing but trouble. We know she has the para-esophageal hernia (also has been surgically repaired over and over) and when that bulges (or "herniates"), her stomach slips into the chest cavity. Since her stomach and esophagus are tied together, you can see how that would cause problems and awful pain. Anyway, this is totally separate from anything having to do with the CDifficile. She's starting on yet another medication to help with spasm, as we all don't want to put her through any other scopes or procedures right now.

I hate this all and I don't feel bad for saying so. I am lucky to have caring people in my life, and even a few friends who have kids who require a little extra medical care and can understand exactly how I am feeling.
I think most people know that though I hate all of what Liz has to go through, I am grateful for all of the ways- and there are MANY- in which she is wonderfully healthy.

I hadn't been to the hospital to mentor in weeks because it was just too much considering all we've been dealing with. I got a call from a social worker who told me that a family I have been working with was inpatient again and asking for me. So, Tuesday I went back.....and all I kept thinking was "we cannot come back to this place for an inpatient stay". We just can't; I don't want to. As I walked down one hallway I saw a sign on a door that I didn't recognize. It wasn't an isolation instruction sign or an npo sign. As I got close I saw that it read "Do NOT enter unless you have a POSITIVE attitude!" It was just what I needed to see at the time. I wish I had gone in and met the parent who wrote it and told them how lucky their child is to have such a wonderful advocate.

It can be difficult sometimes to be positive. It is easier for me to be grateful than it is to be positive. It is easier for me to be in denial than it is to be positive. It is easier to put on a smile and say all is well, than it is to be positive. Or maybe, when the going gets super tough, denial, gratefulness and a smile is being positive. In any case, I won't forget seeing the sign on that baby's door....and when Liz is inpatient again. NO, if she is ever inpatient again, we will hang the same sign.
I will update after UCLA Monday.

Stuck

I have become a professional poop-smearer. Seriously. I should offer my services to others in an effort to make some money as I have developed a strong stomach and tolerance for "gross." These cards, when it is not obvious that Liz is bleeding, let us know if she has blood in her stool. Gross! Not fun at all.....





....but this IS super fun.....

The girls and I made a trip to Nordstrom to shop for shoes. In perfect pre-teen form, they suggested that since we were already at the store we should also shop for things other than shoes. I love this shot of the girls because they were touching, like they often do, without even knowing they are. I cling to images like this when I hear them arguing or see them lash out of each other.
Such a fun little girls-only outing.






I heard from the doctors yesterday. I cannot tell you how over I am hearing "this is rare" or "this doesn't happen" or "uncharted territory" or "untested on children" when having to do with Elizabeth. My Elizabeth, who I don't want to be rare or a first-case or first-to-use patient. She is precious-her body is precious- and I don't want anything to change her. The fact is, though, this infection that has taken residence in her, is changing her and we must stop it, and to do that we have to go a route that is making everyone a bit nervous.
I have been on the phone for two days straight, it feels, with the doctors and nurses. They have been calling me which is never a good sign.

So, here's where we stand - we have 3 options:
1. Do nothing. It is an option, but even the conservative doc, who advises antibiotics as though he's handing out rare diamonds, feels we can't wait. She still has symptoms and she needs to be on an antibiotic to reduce the toxin and kill the infection.
2. Use one of the two untested drugs.
3. Do the fecal transplant
4. Run away to a resort in Mexico, where we'd all develop diarrhea anyway, so Liz would fit right in, but at least we'd be on a beautiful beach and have access to super-cheap drugs. Seriously an option in my mind.

The Infectious Disease team at Millers has recommended we try one of the drugs.
We were lucky to have had our insurance cover much of the cost of the drugs she has been on since April- over $10,000 worth. I was especially lucky because the wonderful Infectious Disease doc she has and his staff did all the paperwork and phone calls required- a huge gift to me as I usually have to be the one to deal with the insurance. Now, though, our insurance is saying they will only pay for 3 days on the new drug and we will have to pay for the remainder of the weeks she'll be on it. The docs want her to start it right now and we can't wait for the insurance to agree to covering a longer period, so we're just going to go for it and file an appeal with our insurance company. This is the stuff that kills me! I speak English, I am smart and I have common sense (what a catch I am!) and I am comfortable dealing with all of this medical stuff. Can you imagine if I lacked these things; how difficult it must be for those who do.
Anyway, she is to start the drug tomorrow. She has an appointment in the morning with her GI doctor because her nausea, retching and pain has increased since last week. I will get his opinion on the drug before actually giving her the first dose.

I also heard from am Infectious Disease doctor at UCLA today. He reviewed her file and has asked to see her on Monday morning, so we will head there for a second opinion. This man was incredibly sweet and he is going to speak to the GI team at UCLA and the adult infectious disease doctors there before Liz's appointment, so that he is prepared to talk about the fecal transplant.
I have felt comfortable with her Infectious Disease doctors here in LB, but I think it is time for another opinion and knowing there hasn't been a pediatric fecal transplant done at Millers, confirms my need to get the opinion of another team.

As for how she is doing.... she is sick. She is in the bathroom more the last 2 days than she has been and her poor tummy hurts. Her appetite was less today than it was yesterday. We had a fun trip to the store last night and then she spent an hour playing at the park and on her scooter, so today she napped mid-morning and then stayed inside. She has been much worse before, but she is not feeling well and if we don't get her started on something soon she will only get worse.

So that's it. We are stuck in a way. I remind myself that it is better to be stuck than to be without- to have to be without medical care or antibiotics. If we were in many countries, Liz would be in big trouble at this point. I could say more, but I think it is obvious just how much trouble.

Okay, Seriously Serious

Life is such a ride. I have heard it said that God is faithful-believe that, but He can be unpredictable-know that.

Our wonderful parents of young children lifestage group is a family that cares so deeply for each other. By the title, we obviously have in common that we all are raising children and so we know each other's families and we are all blessed enough to be able to support each other whether through friendship alone, or childcare when it is needed, or meals when a family suffers an illness or the new life of a baby. We have helped eachother move homes, build homes and even financially be able to stay on one's home. We also have the privilege of praying for each other, and in some cases, coming together to literally lay hands on a family in prayer. Tonight, a group of 14 came to our home to pray over us; to pray especially over Liz. A neighbor, who was invited to pray by one of the men in our group, came to the door, Bible in-hand and even prayed aloud for Liz. I would have bet all my money that he would have declined the invitation. He taught me a lesson tonight about not listening to His prompting and about not assuming anything. My kids were able to see that a neighbor cares for them as he cares for himself.... yet again more scripture lived out for them to witness. I wish someone had been taking pictures of it all, because it was amazing. I worried Liz may be frightened to have people surrounding her and coming to the Lord in prayer on her behalf, out loud, in front of her. It did not. Instead she sat perfectly calm and at one point had tears in her eyes.
What a gift. What a gracious, wonderful gift.

This time of prayer could not have been planned any more perfectly. Just before people arrived at our home, I received a call from Elizabeth's Infectious Disease doctor.....
Liz has been complaining of ringing in her ear and muffled hearing, since Friday. I wanted to wait a day to make sure that she wasn't having the common ringing of the ear that we all get from time-to-time. One day turned into two and I should have paged the doctor yesterday, but ignorance is bliss at times and I decided to wait until this morning just to be absolutely sure the ringing was still an issue...as though watching her hold her head wasn't a good enough sign. Uhh,the guilt. Anyway, a serious side effect of Vancomycin can be ringing of the ears and hearing loss. She will have a hearing test soon to see if she's suffered any hearing loss-I do NOT think she has. We are stopping the drug immediately and the Infectious Disease Team is going to talk in the morning about what to do now. They will have to weigh which of the new drugs to try. Given that the Vancomycin did make her symptoms better while she has been on it, the doctor is wanting to maybe try one more drug before going for a fecal transplant. We will talk much more with the doctors in the morning.

This is a serious setback for Liz. She is not ready to be off antibiotics yet, as the toxin is still causing her symptoms. While they figure out which drug to use and order it (the hospital does not have the two new drugs), she will be off antibiotics, so I pray her bleeding and horrible pain does not return. There is also the concern that the new drugs have not been tested on children yet. Risk vs benefit.... so scary.

Please, please continue to pray for her healing and for protection from the side effects that each drug carries. Growing up I would often say (as if nothing else I'd ever said had ever carried as much weight)"Okay, listen to me, I'm serious this time..."- when wanting the floor/wanting the full attention of those around me(can you blame me? I was competing with second and third-born darling Megan and in-your-face-look-at-me Travis! : ) ). Anyway, I feel like saying the same thing now: "Listen to me, I'm serious. If it wasn't serious before, now it is serious.

I am upset and scared, worried and burdened by this new development. I have been praying for the very opposite of what has happened. And still, I feel cared for and loved and absolutely reminded that though it kills me to watch her suffer, none of what happens to Liz is in vain. She has brought people together and she is so obedient to it all....how can I not follow her example.

Why

I wish Elizabeth never worried at all, or if she did, that her worries would be so small and trivial I could giggle at her concern. Instead, no matter how faithful my girl is, or how trusting in us and in God she may be, she has worry; the kind of worry that makes her eyes fill and her head fall against my chest.

Last night as we sat next to each other on the couch watching Walt and Kate take their turn at playing Wii, she whispered "Mama, why did God pick me?" The question came out of nowhere and caught me off-guard. I think she must have asked this in the past, though I can't remember a time she did. I know we have talked about it many times at my prompting before. If she has asked it, she has not done so with such sincerity before. I told her that God chose her because she is so strong and she is such a great example to others. That He knew she would bring honor to Him as she showed faithfulness and led others to pray for her and live an example of leaning on Him.

She said "I know. So then answer this- if God made the doctors' brains smart enough to be doctors, then why can't they fix me?" And that, friends, is when I got stuck. I opened my mouth, but nothing came out. I instantly thought of people we know and know-of who suffer so much, without end at times. It is the question I wrestle with all of the time. Why, if one is being faithful and their suffering is bringing glory to God, why must it go on and on for some.

I wonder when or if the day will come when she will say she doesn't want to be used in this way. I think she must have thought it, but she hasn't said it. Or maybe she is so much stronger than I am she has never thought she wanted "out" of this plan for her life.

My heart aches for her in a way that only a mother who watches her child suffer can understand. At the same time though, I stand in awe of her and how she is being used. I know that her suffering will inspire someone or bring someone who doesn't usually pray to their knees, or make someone evaluate how tough they really have it.

I ache. I admire. I question. I pray.

I'll end this post by saying that sweet Ruby Jane, who lost her fight last week, inspired our family. Ani, we are praying for you and Matt and little Kate during this difficult time.
For those who have not yet done so, please go to www.donatelife.net to register to be an organ donor. The Taylor family is suffering but also thinking of others during their heartache, and asking that people honor Ruby by registering. Thank you.