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

Friday, December 30, 2011

Prayer request

Please pray for Elizabeth. Her cough has gone from bad to much worse, with wheezing, fever and chest pain accompyning it. After a trip to the doctor this morning and then the hospital for xrays this afternoon, we are waiting to hear if she again has pneumonia. That in itself is bad, but knowing how her CDiff flares while she's on antibiotics, we are praying it is not pneumonia. She was given a large dose of steroids in the pediatrician's office and will continue on the steroids for five days. We should see a positive difference by tomorrow.
Thank you

Thursday, December 29, 2011

Good for the heart

Elizabeth has a friend over today!! This is the first time in many months that she's had someone over to play, as schedules and illness haven't permitted. Actually, Liz has an awful cough today and was up most of the night with a fever, but she was dead set on having this play date and I think it is super important for her to have this time of fun. Girlfriend time is good for the heart. My sister and her husband took Jackson and Kate to Pretend City, so Liz and her girlfriend have had freedom and quiet.... a perfect setting to make their own noise and chaos in.

Little fashion girls. They have decided to make the girls' bathroom into a fashion studio. A piece of plywood over the jet tub (that is never used anyway) makes for a perfect table and the mannequins have found a new home. Liz's friend is a cutie, but for her privacy, I won't show her face.

Silly string for silly girls.

{Total happiness}

Wednesday, December 28, 2011


Yahoo!!! Today Kate had her counts drawn at her Hematology appointment. As we arrived, the nurse asked me to fill out a history sheet for Kate's new patient file. I smiled and told her that I would do it out of protocol, but I knew this would be Kate's one and only visit to the office.... my official unofficial call.
Kate's numbers look fantastic! The doctor agrees with my thinking (alright, I should probably phrase it that I agree with the professionals opinion)- that a virus hit her body super hard and caused her counts to crash last week. We won't test her again until July. Such a great thing to see counts that look so great! Grateful!!

Now for a few things I am following and I think you may want to follow, too:

The Taylor's are getting close to the Run for Ruby - to be held on the morning of January 7th in Rancho Santa Margarita. Please check out the site or blog to learn about this amazing family and all Ruby's life has inspired. If you don't want to run (though I know many of you who are runners and would love to do something to benefit the Ruby Foundation while running a beautiful course), you may want to go to donate blood with the Red Cross or register with Be the Match...or maybe just to enjoy the morning.

Go here for more information:

My friend Jen left two days ago for....wait for it... 10 months of traveling around the world! Say whaaaattt?! I am so envious. If I was not a married mom, I would either be a business woman traveling this world (the whole reason I studied my now useless Japanese in the first place) or a back-up dancer for some pop star, bouncing from place to place (never mind the fact that I have no coordination, caused by what I have shared before.... Travis Ramsey. Had he not been born and pushed my parent's budget or time management, I would never have been pulled from my five year old ballet and tap classes and I would be an amazing dancer, I'm sure! I am not bitter at all:)
This PTA mama, who is drowning in carpool and throw up, is so excited because I am totally going to live through Jen. You can too because she has a website and will be keeping a journal of all of her adventures (shenanigans) throughout her journey.
She is full of energy, totally brave, ready to throw caution to the wind, going places many of us dream of visiting, is a petite little thing with the food tolerance of caveman meets Bourdain, loves wine, and is only taking one pack with her for the year... how can you not want to follow her?!

Here is an article about Jen with a link to her site:

Tuesday, December 27, 2011


I'm living a yo-yo life, it seems. An uncertain, unknown, unplanned life. And you know what, I am having to learn that some things are the way they are and words just can't explain....but I am kicking and screaming inside during this life lesson.

Today we had an appointment with the Immunologist/Pulmonologist/ Fix-my-kid-please-ologist. A huge praise to report is that Elizabeth does not have full blown, active CGD. I am so, so thankful for this and seriously let out a sigh when the doctor shared this. He does believe she is a carrier and so when she decides to have children, she will need to go through genetics testing and counseling. That is a bridge Liz will have to cross when she gets there. For now- joy, joy, joy!

We talked about how she has been since her IVIG treatment two weeks ago and he reiterated how it will take time for her body to adjust to the infusions and for treatment to work the best it can for her. He also said that her headaches and fevers are probably from the IVIG. We will move her treatments closer together (ugh!) after her next two are done. We'll have an idea of the effect it may be having on her after her blood is tested on the 13th, right before her next infusion is administered.

Dr. Brilliant had spoken with Liz's Hem/Onc doctor (one of the greatest men in the world!) and they are concerned about her bone marrow. I have said how her last bone marrow aspiration shows that her marrow is still hypocellular. This last marrow sample also shows that her B cells are abnormal... which is not good. There is no malignancy, which is "odd" (umm, more like a huge gift, I felt like saying!!), but her B cells are defected; they are failing to mature or reproduce properly. B cells are lymphocytes that play a huge role in a body's antibodies/immune responses, so the findings go right along with her other lab work and her symptoms. Now the docs need to find out why her Bcells are like this. We will see her Hem/Onc doctor tomorrow morning to talk more and to discuss additional therapies. Kaitlin also has an appointment at the same office tomorrow to check her counts because of how low they all were last week. Please pray with us that those labs were simply in reaction to a virus, and not indicative of anything Liz is going through. I am certain she is fine.

Liz has lost weight this past month which was discouraging. Dr. Brilliant was also little concerned with her ability to open up her lungs, so has advised us to start moving her more. More? She runs around like a crazy person, playing with her brother and sister, but alright, we will do more.

As I write, I have a sick Elizabeth in my bed. She has a cough and congestion and her chest hurts. Add in her tummy pain and she is kind of a mess. If I am honest, I will admit that I feel a bit of anger. Though I stroke her head and try to soothe her, I do so with a mindset of complete fatigue and (ugh!) admittedly, a teeny bit of annoyance. I am so tired of sick I could just scream. Really, I could. That sounds awful, but it is the truth. I literally have to pause and remind myself that if we weren't in this situation, I know I wouldn't feel so...ambivalent at times. I remember a friend who had a sick child telling me how she felt ambivalent sometimes about her child feeling sick. I could not understand, no matter how hard I tried, how a mother could say that. I didn't judge her because I wasn't in her position and I was certain she meant another word than she had chosen to describe her feeling - or not feeling. Now I know she knew exactly the word she was using. If you know me, you know that I am so very caring and compassionate with my Liz. I have held her as she retches, rubbed her back, massaged her body, bathed her, spoon fed her, sung her to sleep, encouraged her, held her hand, watched over her, counted her breaths, and rocked her in my arms more times than many mothers have a chance to (which in itself is actually a blessing). I have done all of those things and more. And yet, even a mother can grow tired and weary, and long for normalcy.

I don't know much, but I do know that I see things differently now than I did before.

O' Christmas tree and the flu for me!

Christmas Eve pajamas. My goodness, how old do they look!

The most fake smile ever, but it shows off his "All I want for Christmas are my FIVE front teeth!" smile. Jackson's Christmas Eve pajamas are CK pants and a white tee, just like Daddy wears to bed.

The girls' faces as they saw what was hiding behind the Christmas tree......

....bikes! Kate's cool blue and green beach cruiser. Liz's pink and white beach cruiser with scrolled "Lulu" (her nickname) written on it. And a green and black bike for Jax. So fun.

And that is it for photos, because immediately after I took the first bike photo, I got super sick and spent all of Christmas day and night in bed with a horrible flu. I was too sick to be overly sad that I was missing out on the day. It was just that bad! In fact, two days later, I still feel pretty gross, so I am just going to count it as a start to my New Year diet, and go with it.
Elizabeth says it was her best Christmas ever - forget the fact that her mommy wasn't present at all!- and that is what matters; I am glad that she and Kate had a great day. Poor Jackson wouldn't even move to open presents and was pretty miserable with what we now know is a sinus infection. Boo for us! Next year we get a big, big do-over Jackson!

I hope you all had a wonderful, healthy Christmas!!

Friday, December 23, 2011


Phew, it has been a rough week. First with Kate's sudden illness and hospitalization and then with Jackson being sick. After getting through all of that, I was so happy Wednesday to finish all my wrapping and cleaning in anticipation of relaxing and just enjoying the few days before Christmas. Man, this year has taught me- and keeps reminding me- that I can plan all I want, but things may not go as I would like. Yesterday Walter woke up pretty sick with the stomach flu and just as I was heading out the door to take Elizabeth to the hospital for her long morning of studies, Jackson came to me vomiting. ugh! Poor Walter, I had to throw Jack in bed with him and rush off. Guilt!
Today Walter is better and Jackson is the best he has been all week. I think he was just sick to his stomach because of all of the mucous and coughing. Poor kiddo has missed a week of school and has been asking for his buddies. The natives are growing restless being under the same roof for so many days while feeling sick.
Kate went back to school yesterday (if only to escape the yuck happening here) and even played in her first scrimmage last night for her club volleyball team. I hated letting her play, but she insisted on not missing it as she said she didn't want to have her coach think she wasn't tough. Sweet girl; she wouldn't even tell him she'd been so sick. When he commented on how pale she was, she said nothing. Hard core!

During the night Liz woke with a bad headache and this morning had a fever and dizziness when she would stand up from sitting. I reminded myself that we have had plenty of illness in the house this week and so it is possible that she is just fighting off a virus. When her counts get low and the doctors warn to bring her in if she gets a fever, I have to use my judgement or we would be in all the time!
It was very sad though when she told me that she doesn't care about Christmad because she feels sick. I am praying that she gets some sleep tonight and wakes feeling much better in the morning, because she is NOT spending Christmas in the hospital or in bed. She just isn't.

Yesterday Liz had a gastric emptying study in Nuclear Medicine. After our rough week and the chaos of the morning, I started to cry as I sat at the light waiting to enter the hospital. 80% of the hospital nurses started a strike yesterday and they were making it difficult for cars to enter the lot. My frustration just reached a limit and I couldn't stop my tears. I cannot speak to their issues, as I am not a nurse there, but as I watched only one car per long light be able to get into the hospital, I wanted to yell out to them "Do you think we want to be here? Have you even thought that perhaps one of these cars holds the family of someone who is dying in there and they have been called to rush to the hospital, but now must wait and wait at this light?! Get in there and take care of the patients!"
Anyway, we finally made it inside and though the test takes a few hours, it was uneventful. Liz was patient through it all and I was grateful for that.

Looking forward to a wonderful weekend. For those coming over tomorrow night, know that the house has been bleached, sanitized and laundered. We have no more germs to spread and we are looking forward to a home full of extra fun and love (and maybe even a Wii dance off :)

Tuesday, December 20, 2011

Home Again, Home Again

Kaitlin is home from the hospital! She is feeling better than she was over the weekend and is resting as she is tired. Her asthma is acting up a bit and she has a cough, but overall feels pretty good. Everyone slept well last night and that alone was a blessing. At one point over the weekend, I had been up for 41 hours straight and when a nurse commented on it, I told her how I had been in training for years with all of Liz's hospital stays. Still, sleep is so good and I needed it last night!
We decided to surprise the other two by walking in the door without having told them Kate was being discharged. Liz ran to me and cried and cried as I held her. I think that she had such a mix of emotions over worrying about her sister and missing me.

We'll watch Kate for fever or petechiae, just as we do with Liz, and she will have labs drawn again later this week. She will be seen by the Hem/Onc doctor on Tuesday when we go for Elizabeth's appointment. When the Hem/Onc doctor saw Kate yesterday in the hospital, she said we will just take things slowly and hold onto the fact that Kate could have been hit by a weird virus and her body reacted with becoming suppressed. I feel my stomach drop when I think of that because it is exactly what we were told about Elizabeth two years ago. Still, it is a real possibility and I remain hopeful that it will be the case for our Kate.

Jackson has a bad cold and cough and has been home from school the last two days. Our home is full of irritable people, but we are happy to at least not be in the hospital.
Ironically, Liz is doing great! With her immune system so compromised right now, and the way her colds turn into pneumonia or sinus infections that require a dreaded antibiotic, which in turn causes her Cdifficile to flare, I am fearing she will get Jackson's cold. If she can stay healthy through this, I will be ecstatic!

Liz has a gastric emptying study on Thursday in Nuclear Medicine at the hospital. Our hospital's nurses are going on strike that day and I hope it won't cause for a delay while we are there. She has only this test before Christmas and then won't have to go back for appointments or treatment until the 27th. Some days I feel as if I have a continous list in my mind where I check-off one trip to the hospital after another.

Christmas Eve I have the tradition (with Meg and Trav) of delivering meals with a group of volunteers to families who have children who are inpatient. Though we have spent a few holidays in the hospital - Easter and 4th of July this year alone- we have been so fortunate to not be in on Christmas. The group gathers at the hospital kitchen and picks up huge food carts full of meals which we deliver to each pediatric, PICU and NICU room. We also deliver a gingerbread house so that the family has the fun of that. It is a joy to be able to bring a tiny bit of cheer to the families who are there for Christmas.

Thank you for continuing to pray for our family.

Monday, December 19, 2011


One of the pediatricians from the group the kids go to came by this morning. She is special to me because in the way life works for good sometimes, she has been the doctor on call during almost every one of Liz's hospitalizations throughout the years. She is a great doctor and a mommy (which benefits a doctor's care) and I like that she doesn't freak out or over treat things. Anyway, she came by to see us and talk with me about Kate's lab results from today.
"When you hear hooves, you don't know just by sound whether it is a horse or zebra you are hearing"
This is what the doc had to say to me after giving me news that the Hemotology/Oncology doctors will be by to see us today because Kate's labs are pretty bad. Much worse than yesterday's and looking a lot like Liz's. Her quote is meant to remind me that though we have wondered if Kate would eventually present like Liz (mostly because they are identical twins), we have to keep in mind that Kate's blood may be reacting to something else and we are not positively going down the path that Liz is on. One's blood counts can go down when an infection causes suppression, but usually not all three cell lines. Still, I am trying to be optimistic and hope it is just a reaction. Besides, have you looked at Kate lately? My little beauty is a tank! So tall and strong, and starting to get an athlete's body as she plays volleyball. She is fine.

Kate's fever is better this afternoon and we just stopped the iv meds to see how her tummy does off of the Zofran. She ate a bit of lunch and hopefully she will stay feeling much better. For now, we are waiting for the hem/onc docs to come by and speak with us.

I feel torn because Jackson is home sick today, too. He just has a bad cold, but wants his mommy. Walter is working 11-11pm, so he isn't home either. Princess Liz slept until 9:45am and feels good.... we are praying that she can fight off the cold Jackson has. If she can stay healthy through this week, I will consider it a huge win for team Liz!

Sunday, December 18, 2011


I am too tired. Too darn tired of all of this.
Last night, while I had a full house of kiddos as I was watching Megan's girls overnight, Kaitlin got very sick out of nowhere. One minute she was fine, and the next she was miserable. For eight hours through the night, she had a horrible headache, stomach pain and vomiting. Actually, it was more violent retching because, like Liz, she has a Fundoplication (her stomach is tied in a knot with her esophagus which limits the ability to throw up). I gave her Zofran (anti-nausea med) twice, but it did not help. For patients with fundos, sometimes you have no choice but to bring them to the ER for iv animetics because they are not able to vomit to stop the cycle.
Her symptoms are so strange as she is not nauseous and the vomiting comes mostly from movement or when she walks. She has a bump on her head from getting hit by the thick chain of the tetherball at school on Friday afternoon and has had a headache from that, but the docs think that she would have presented much earlier on Friday night or Saturday if this was the result of a head injury.
After being in the ER for a few hours she developed a fever....and the ER docs and her pediatrician decided to admit her. They obviously didn't get the admit was not part of the plan. Just a quick iv dose of Zofran to help a Fundo. kid and we were going to be on our way. Blah!

She is still fighting the fever and is uncomfortable and not talking, but she is thankfully sleeping after having been up all night and into the day. I was super proud of my girl who faints at a papercut as she went thru the ER process, but I think it speaks to how bad she feels; she doesn't have it in her to protest.

So many employees have seen me and said "you have got to be kidding me!", assuming from afar Kate is Liz and then feeling even worse when they realize it is "the other one." Kate has only been in the hospital as a baby, and she is in awe of all of this. The rookie Kate asked me why I didn't tip the transport-guy who brought us to her room from the ER. Ha!

Through the last year we have elected, with the doctor's guidance, not to chase a diagnosis for Kate as we found things out about Liz. We decided that if she presented with symptoms, we would have labwork done on her, but we have not had blood drawn to check her counts just because Liz is sick. In fact, the docs call Kate their "controller" in this, meaning that as an identical twin, if she isn't presenting with some of the things Liz is, they can use that information towards their therapy and diagnosis' for Liz. So, she hasn't had labs done in about two years.
In the ER they drew blood, and Kate does have low platelets. Now, platelets can drop due to the body fighting infection, so I am going to set my heart on that and not go the route that she may indeed also have blood issues as her twin does. The docs say we will repeat labs tomorrow and outpatient later to follow-up and they will speak to the Liz's Hem/Onc doctor.

Please pray, of course, that Kate get well soon (as in tonight!), and that Jackson stay well if this is contagious (and Walter and me too!). Especially pray that Elizabeth not get sick. Oh, that would be a nightmare and a certain hospitalization and. I can't have one kid on the pediatric floor while I check-in another! Liz's ANC is LOW this week, and she is extra susceptible to infction (so much so that she has been staying home away from people since Tuesday), and I need prayers that she will be kept safe right now.

Things happen. People get sick. I just wish we could get a break from the "things happen" stuff while we are dealing with Elizabeth's health right now. That seems only fair. One, but not both, please.
thank you!

Friday, December 16, 2011

Christmas is Coming

Christmas is coming....

I have patience for so many things in this life. To a fault, in fact.
The Christmas tree is not one of those things! I loathe putting on Christmas lights. You should have seen my sister's face last week as she saw, for the first time, how I put on lights. It was a mix of confusion and disgrace.
I circle and stuff, circle and stuff....and then I tell people that the kids helped! As if that is why the lights look as if a two year old put them on.
Seriously, I do. How awful is that?! Where is the "fingerprints/coloring on the wall"-type poem for mothers that reads how wonderful it is to spend time on other meaningful, special things in life rather than putting lights on the tree correctly? Surly I am not alone in this and there are others. : )

Maybe my favorite....
Megan bought us this to hang from our tree weeks after we found out I was pregnant. Who could have known I was pregnant with TWO GIRLS!

Liz got this after her first year performing in the Nutcraker at the Terrace with LB Ballet.

The girls' 3rd grade teacher had them make ornaments using their school photo from that year. I was grateful to have it then, and I am even more grateful now that the two years have passed and they are looking so old.
Last year Kate got the New York ornament to document her obsession.

Jack's first Christmas ornament and one done in preschool.
The deer was done by him two years ago at our caroling and hot chocolate party. So fun and we will definitely host it again next year. I remember my girlfriend Wendy installing a ceiling fan on her front porch and announcing that she was "bringing front porch living back, y'all!" My caroling party was an attempt to bring caroling back, y'all! After the girls asked me what caroling was I was determined to show them .... and my neighbors weren't quite sure what to make of the group of 52 of us caroling the neighborhood! So fun!

After her trip to the OR two weeks ago, Liz chose this from the hospital gift shop. A butterfly, of course!

This was a favor handed out to guests at the Long Beach Ronald McDonald Ribbon Cutting Ceremony/Party last night. It is a "bag of Christmas"...Pine, Cinnamon, Clove and Peppermint. Can you get over how sweet it is?! Alright, maybe most of you see it as a bag of leftovers, but my inner Martha meets Laura Ingalls thinks it is so perfect (and it does smell like just Christmas!). Girls, if you come to my next party, don't be surprised if you get one of these handed to you.

I LOVE the art done by the kids from their preschool years!

The kids get so excited to check for Christmas cards each day! We have a tradition of packing them away for the year and looking at them each December when we decorate, usually smiling at how much people have grown or changed.

Today is my sister's birthday! When I was only 14 months old, she came into this world and stole my show as an only child. We have been friends and enemies (can you picture the duct tape down the center of our bedroom, dividing it? Great idea until we realized we both would have to cross it to get out of the room.). We have kept each other's secrets and even spread a few about one another. We have dated brothers...that didn't turn out so well.
She was my very first friend and will always be my best.
Happy Birthday To You- kind, giving, beautiful, always-have-had-a-twinkle-in-your-eye (literally!),serving, faithful, praying, amazing mommy, loyal friend, fun, learnedevrythingfromhersister, Megan!

Talk about stealing the show.... Travis, Travis, Travis. I don't even have a picture from the last decade of Megan and myself without him in it, so this will have to do. Just put your thumb over his big head. I know, even a thumb doesn't cover that thing!

Wednesday, December 14, 2011


I saw Wicked last Saturday and there is a recurring thing that one of the characters does.... she air-wipes away, with flailing hands, the "yuck" or "blah" when she refers to something she doesn't like or that is a negative thing one doesn't want to think about.
You all know how often I use those very words, and her hand movements would go perfectly when I say them and want to wipe, whisk, or shoo away things happening that I wish were not.

Today Elizabeth had the Hem/Onc clinic. It was packed and we waited over an hour past our scheduled appointment time in a full waiting room. A waiting room full of shiny, bald little heads and tired eyes. Ugh!
I shared earlier with others that the last two weeks or so have been full of unfortuante things one after the other - big car repair, plumbing issues, many trips to the hospital with Liz and even our central heating going out last night to top things off. All things that could make a person ask "Again? Are you kidding me?"; all things I asked out loud, in fact.
The mothers in that waiting room today who have a child with cancer would wish that all of those things were their biggest worry. Reality check.
And then, I looked over at my own Rapunzel-haired beauty with her tired eyes and her mask on and I was struck and confused, yet again, at how we were where we shouldn't be. Blah!

So here's the deal...Liz's bone marrow shows no blasts, no cancer. Praise the Lord!
Frustratingly, it shows that it has not "recovered" and it is still hypocellular. We were hoping very much it would have changed at least a little. The doctor feels the abnormality in her marrow is part of the "process" she has going on. Process = fancy word for "whatever is going on with your baby that we can't figure out". I may not have a doctorate, but I have figured that one out on my own, thank you very much. Process. Blah!

Each time we go to the Hem/Onc, Liz gets a finger stick and her blood is run right there in the office. The patient is then told their white blood cell, red blood cell, platelet counts and ANC (absolute neutrophil count) among other things. Today, Liz's blood was not very good.
WBC should be 4.5-10, Liz's was 2.0.
ANC should be 1,500-8,000 Liz's is 706 today.
This means she is mildly leukopenic and neutropenic today. In English, it means she is susceptible to infection right now (besides how she has been susceptible based on IGg numbers). She's also anemic and her lymphocytes are up. Just a whole bunch of yuck today.

She will go back to Hem/Onc in 10 days and at that time we will talk about a meeting that her Hem/Onc doctor is going to have with her Imuunologist about her case. For now, we wait.
Well, not totally- she has a gastric emptying study, the Infectious Disease doctor, Immunology and then the Hem/Onc all withtin the next two weeks, before going for her next round of IVIg. Not exactly sitting around...but waiting for them to figure out her "process" nonetheless. Blah, yuck, hands air-wiping it all away.

Liz has felt worse as the day has gone on with a headache and nausea. I am certain it is a reaction to yesterday's infusion, as we were warned may happen. Please pray for her to feel better very soon.

And still.... totally, tear-starting grateful.

*** My blog will be going "private" in the next few days.****

Tuesday, December 13, 2011

Here we go....

This small bottle is what we are praying will drastically change how our Elizabeth feels and how her body is able to fight infection. This tiny bottle is what we are praying will help get things back to normal.I have stayed up nights worrying about this and I have agonized over my decision to authorize this treatment and suddenly there it was, staring me in the face, that small bottle of fluid.I literally held the bottle and prayed for it to make her better.

Liz began IVIg treatment today. We spent seven hours at the hospital.... one hour of getting a line started and waiting for the delivery of the IVIg and then six hours of the iv running and another two hours of observation.
Liz did very well! She was given iv Benadryl (which made her feel so tired she was able to nap....I wanted some of it myself!)and Zofran (for rash, itching and nausea) before the IVIg was started and we've kept the Zofran going so that vomiting isnt an issue. We are super grateful that she did not have any of the severe reactions that are a possibility when first starting treatment. Liz is always in the small percentile of "rare, but could happen" and it is a blessing that she was safe and did so well today.
Within the last hour she has developed a headache, but I expected that. The nurse said her patients who are older describe feeling flu-like or hung over after treatment. For now, we just watch for fever and pray that vomiting is held at bay by the Zofran.

Tomorrow morning we have an appointment with the Hematology/Oncology doctor. I am anxious to hear the results of last week's bone marrow aspiration as it will either bring comforting news or disturbing news. No matter what, I am hoping the results will bring more information to better treat Liz. We may also get the results of her NBT labs that will either confirm or throw out the diagnosis of cgd. Blah.

Thank you for your prayers and support. I can't believe that we are walking this path and I at times struggle with how much things have changed over the past year; how much worse Liz has gotten....but just as time can bring bad, time also heals and I know that this time next year Liz is going to be better.

Liz spent her time today snuggled and playing on the computer that the Smiths handed down to her. A pink computer is so very Lizzie!
For my sewing friends- Liz received a blanket from an organization called the Joyful Foundation. If you have time and would like to donate a blanket, contact them @ Liz's face lit up when she was handed the blanket and for many patients they are a source of warmth in the cold treatment rooms and comfort. Blankets are given to children and adults.

Saturday, December 10, 2011

A dream...

A dream is a wish you heart makes.....
Liz's wish to go to Disneyland during the Christmas season came true. We had a wonderful overnight trip and we are more thankful than words can express. The weather was great, the park was beautiful, and except for a couple bloody noses, Liz felt pretty good! The park was unbelievably crowded, but with Liz's pass, we bypassed lines.
As we left the park, I asked her if the day was as she had wanted; if it was as she had hoped. She answered that it was more perfect than she ever could have wanted.

Wear the mask, but then touch the spiny-thingy that thousands of snotty-nosed kids have touched before you. Yuck!

My sister and her family, and my mom (who all have passes)joined us for the parade.

Annnnndddd, this was when I started to cry. The music alone could make a person cry, but then throw in the snow, the squeals and exclaims of all the children and the emotions I have about my own kids right now....I was a mess.....

Fireworks and room service to end the night

Falling asleep under the wall art of twinkling lights, that also played a lullaby.

Such a sweet ending to our special, special day. Dream away, sweet girls.

Thursday, December 8, 2011


Our home is full of excitement tonight as the kids plan out our day and overnight stay at Disneyland tomorrow. Yay! Liz has been sick this week, but today seems a bit better, so I am relieved that she will be well enough to enjoy our day. She is totally fighting wearing a mask tomorrow while we are there, but it is a must. I told her she needs to, the doctors said she needs to, but she told me that none of us are smart (she is half right!). So, I told her I would ask an unbiased "smart doctor" who is not caring for her..... and he said he advises it. Tomorrow will bring a stand-off, I am sure.
I am so looking forward to tomorrow and our family time together. The timing couldn't be better, as this will be a last hoorah before we get biopsy results and she begins treatment next week.

Today we submitted for an extension for her Home/Hospital schooling. It was a bummer to follow through with the actual paperwork, but I know it is best to keep her out of class. Hopefully the IVIg will have a big effect on her and her immune system will be good enough for her to go back to school by February.

I haven't blogged about my chance to do a walk-thru of the new Ronald McDonald House last month. You may remember that Liz (and the Russo boys...hey M & S) had the chance to take part in the groundbreaking ceremony last year. It has been fun to watch the house grow as we drive past it each time we go to an appointment or the hospital.

The house is beautiful and will be such a blessing to every family who has the opportunity to spend time there. It has been a privilege to have just a tiny part in it and I encourage all of you to volunteer if you can. They are taking names and scheduling dates for help. If you would like to make a meal for those in the House or provide baked goods, or host a movie night the LB Ronald McDonald House to get more information.

We are lucky to have the hospital so close to our home, but many families do not live as close, or their homes are not clean or safe enough to stay in while their child receives treatment. Volunteers like you can help make a difference in their lives.

Have a wonderful weekend......we will!!

Tuesday, December 6, 2011

This photo is Liz in the Infusion Center, or "Day Care", as frequent flyers call it. Patients who are receiving chemo, transfusions or getting lines started before certain procedures go to the Infusion Center. I have to say, I am always struck by how especially wonderful the nurses are in this part of the hospital.
Liz was angry at being there (which is a horrible sign of how she'll act having to be there for 5-8 hours a day every three weeks, for IVIG, starting next week), but she was happy to have her daddy's Ipad to play with.

Yesterday's bone marrow aspiration went well. It was a pretty uneventful trip, which is exactly how we like it! Liz's pain has been less than after the last BMA and she tolerated the sedation fine. Last night she developed a fever, but I felt it was from a virus rather than post-aspiration infection, so I stayed put at home rather than heading to the ER as we were instructed to do if a fever came on.
Sure enough, she is sick today with chills, a cough, congestion, headache, and runny nose. We are praying it stays simple and doesn't turn into pneumonia again or yet another sinus infection. She cannot be on an antibiotic again as it starts the CDifficile cycle all over again each and every time.
We have an appointment next Wednesday with the Hem/Onc doctor to get results from the BMA. Tuesday she will begin IVIG therapy at the hospital and hopefully by then we will also get results confirming -or, please God, disproving- the diagnosis of CGD, which she tested positive for last month and had blood drawn for again yesterday to make absolute sure of the diagnosis. I have been keeping pretty quiet about her testing positive for CGD until we have these second confirmation labs back, as CGD is so awful and complex it is best to just be calm and push it to the back of my mind unless I know with 100% certainty it is what she has. Now, do not go and Google CGD; it will freak you out and cause worry. Liz's doctor has told us that if she is indeed a carrier, she is on a spectrum and won't have "full blown" CGD.

So, that's the update. More waiting, more wondering, and more praying that yet another virus she now has doesn't become an infection.
Please pray with us.

Sunday, December 4, 2011

Christmas Wish

Sometimes life hits so hard it feels like you have been punched in the stomach, and cannot get air, doesn't it?
I have the kids' Christmas lists sitting next to my desk and have looked at them multiple times. In the past day, Liz must have made a new list because as I reached for my book last night, this caught my eye.
In between a dog and necklaces, she's listed "a chance to be healthy."
I literally gasped.

She has had a couple very fun days, And yet as unexpected as finding this new Christmas wish, she will come to me and say how scared she is to go to the OR again tomorrow, or in passing will tell me how mean we are to allow the doctors to test her, or how dumb we all are to not be able to fix her.
As normal as a day can feel; as carefree as life can feel, she is still scared and wanting to wish this away. We all are.

Tomorrow (Monday) she will have a third bone marrow aspiration done at 11:00am. As I wrote last week, the plan was for her to start IVIG (transfusion) after she got out of recovery. This has changed. A few of the doctors felt that a BMA and then a first round of IVIG was too much (there are reactions to IVIG that will leave her feeling unwell), so she will have the BMA only tomorrow and IVIG will begin next week. I am much more comfortable with this plan.
I am nervous for the first time about the results if the BMA. The other two left me nervous about the procedure itself (just her being uncomfortable afterwards), but this time I am nervous about the results as her bloodwork is showing things that weren't there before the last BMA's. I am trying to keep my worries at bay and instead concentrate on getting answers that may help the doctors.
We are praying that Liz not have as much pain with this BMA as she did last time. Also that she stay healthy through the next week as she won't be able to have anesthesia or start IVIG if she is sick. We're praying that the bone marrow aspiration results show no blasts and that her marrow is functioning better than it showed it was in April. Thank you for praying with us.

Lastly.....we have a big surprise to tell Liz about tomorrow when she is in pre-op! We were going to save it for later in the week, but have changed our minds as it will be a fun distraction for her going into the OR and then she'll have the fun of telling Kate and Jax later!