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

Monday, April 30, 2012

Mother's Pain

On Wednesday, I will take Jackson for his Kindergarten well check and immunizations. As he is being poked, I undoubtedly will feel a pang of pain that will remind me of his first shots as an infant. All mothers, for generations and in every part of the world, know exactly what I am speaking of. That first time you see your precious baby experiencing pain, sets off an emotion within you that is unlike anything you have ever known. It is human nature; for goodness sake, it is animal instinct. For most, you rarely have to experience that horrible mother's-pain that comes from watching your child suffer. For others, it has been part of your life for years. Either way, any mother knows the feeling that can make your heart race, your chest hurt, and the conscious effort you must make not to rip your child from the grasp of whatever causes suffering.

Over the years with Elizabeth, I find myself experiencing that horrible feeling less at times when I normally would have. I assume it is part of the function of our wonderful brains- to get through what feels too painful, we can shut down so that pain is not so great that we cannot function. If I had the same mother's-pain each time I watched my sweet girl experience a needle, a procedure, a bit of suffering, I would not be able to help her get through this all as I know she must. I need to protect her, and I feel that instinct of course, but I know that part of protecting her is allowing these painful things to happen to her so that she will get well.
Sometimes, though, it is a simple thing that gets me.
For Liz, dressing changes are painful. Having the tape ripped from her very sensitive, rash covered skin is something that makes her wince and cry. She is so tough and endures many things without tears, but wound care and dressing changes are awful for her. And for me, I feel that mother-pain each time and it is all I can do to keep myself from pushing the nurse's hands away. As Liz cries that she is "done with all of this!", it is all I can do to not declare the same on her behalf.
So often, when Elizabeth is being poked, scoped, prodded, or is sick and she is at the end of her tolerance with it all, she will say to me "How can you let them do this to me? You don't know how much it hurts."
I remind myself though that one day, when she has her own precious child and experiences mother's-pain, she will see that I know exactly how much it hurts, and that I am suffering along for her.


Sunday, April 29, 2012

Cautious, not crazy!

We cannot put Elizabeth in a bubble to protect her from all the germs, viruses, bacteria, and yuckiness
that surrounds her. The same goes for Jackson and Kate. I also can only control so much, and so I cannot drive myslef crazy trying to keep Liz healthy. Of course we take precautions- consistent hand washing, staying away from people we know are ill, not reaching into bags of food, staying away from buffets (no Souplantation- thank goodness!!!). I have cut back on play dates for Jackson until flu season passes, Liz is wearing her mask when we are in enclosed public places, and she continues to take inhaled antibiotics (thru her nose) in an effort to keep her from getting another sinus infection. Especially now that we have stopped ivig treatment and she isn't getting the extra help with her immunity, and because her ANC continues to be lower than it should be, we have to be cautious. It all comes back to stinkin' CDifficile.... if Liz gets sick, she almost always requires antibiotics, and in turn those antibiotics cause her CDiff to flare. It is a balance of being cautious, but not crazy over germs.
As much as we try to keep healthy, the reality is that people get sick and Saturday, Kate started with a horrible sore throat, cold symptoms, cough and a fever. She was unbelievably busy with school and volleyball last week and her exhaustion, I'm sure, played into her getting sick.
She will be fine, but Liz cannot get sick this week. If she gets what Kate has, the doctor will not be able to do the scopes on Thursday as planned (even if he would, Anesthesia won't allow it to be done). We really need the scopes done this week, in fact she was pushed ahead on the OR schedule because it must be done this week, so being sick would really mess up our plans. Please pray with us that she will stay healthy.
We have a quite a few things happening in the next two weeks-
She'll have labs drawn tomorrow morning which we are a bit anxious about. It has been two weeks since her last set of labs, and we are all hoping for her counts to be better!
Tuesday, we meet with her Hem/Onc doctor here in Long Beach.
Thursday is her trip to the OR procedure room for an Endoscopy and sigmoidoscopy.
I would like for them to pull her PICC line out on Thursday while she is in the OR so we can avoid sedating her again later in the next month or two, but I don't think that will happen.
The following week, Liz will see her Pediatrician to get the Pneumovax vaccine. She was given this in November, but it turns out her body rejected that vaccination, so now that IVIg has been put on hold, we will try it again, in a different form.
On the 15th, she will see her GI doc again and we will discuss the G-tube yet again, based on her weight off of the TPN  (iv nutrition).
In early June, she will have titers testing done. This testing will tell us what her body is doing now that she has had IVIg. I am horrible at explaining the little I understand about all of the Immunology specialty, but this testing will show how her immune system is working now. This testing must be done a full two months after stopping IVIg.
On June 21st, we will head back to CHLA to meet with an Immunologist there who will go over the results from the testing, and also plans to run specific white cell testing (also must be done while she is not getting treatment). That same day, we will meet with a Hem/Onc doctor at CHLA who we have seen before.

Phew, confusing. I don't expect anyone to read or understand all of this. I am journaling to help me have a history for my reference.

I did let Liz go to a fun birthday party on Friday for her sweet friend, Rachel. Liz is pretty isolated and misses having day-to-day interaction with friends. She was nervous to see girlfriends she hadn't in a while, but she ended up having a blast. Seriously, I had tears in my eyes when I saw how much fun she was having dancing and giggling with her sister and her friends!
I had her leave her mask at home, and she wore a cover over her PICC line, so she looked totally "normal!" We are cautious, but not driving ourselves crazy, afterall!

Thursday, April 26, 2012

She broke it.

Today I had to take Liz to the Pediatrician because her poor bottom is causing so much pain and has been bleeding. We thought it may resolve, but after almost five days, the pain is worse. Given that, and the fact that I couldn't see anything that was causing it, we had to go in. Boo! We have actually not been to the Pediatrician's office in....wait for it..... two and a half weeks! Yahoo. We've had her other appointments with different specialists and the Ped. has called me at least twice a week to talk about Liz, but as for going in, it has been a million years. At least that's what two and a half weeks feels like at a time when we were going in at least twice a week for months and months.
When Liz's wonderful Dr. Lee saw her, she squealed and pinched Liz's cheeks because she was so delighted to see Liz's weight gain. Dr. Lee literally said "Come with me, I want to show you off to the office and other docs; we have to show off what we did!"
It is fitting to use the word 'we'- this has been a team effort and Dr. Lee has been great at steering our ship the last few months (we love the other doc in the group Liz was seeing primarily, but in the past few months, Dr. Lee has come on board to take over Liz's case and has been a blessing for us! Those who know Dr. Lee know that she can be abrupt and a little short, but my goodness, she is super, super smart and actually quite lovable and cuddly....even with hugs for me. She hates that Liz is sick and is determined to see her well.....and so yes, she gets to show off Lulu's pinchable cheeks.

After Dr. Lee pranced her project around the office, she examined a very compliant Liz and found that our poor baby has multiple fissures (A fissure is a tear in the anal canal. Aren't you feeling more educated on everything having to do with bellies and bums, the more you read this blog? : ) ). Ugh! This has become a chronic issue for Liz- a very painful and uncomfortable issue- and I feel bad that she has to have yet one more yucky thing to deal with. This time, her fissures are more inside and causing more pain and bleeding than her previous episodes. Poor baby girl.
Dr. Lee is going to speak to Liz's GI doc about doing a scope of her bum to see what she looks like inside, when he has her in the OR next week for her already-scheduled Endoscopy.

{For my records, I will blog tomorrow about what our plans are for the next two months in terms of Liz's care and testing.}
Don't you just love eyes that smile?!
She was cracking up as she gave a hip-shake and a thumbs-down to a bleeding, painful bum.
In our family, we often say "Shake it, don't break it!" as a term to pep someone up,
give encouragement or make someone smile.
We laughed that Liz shook "it" so much she really did break it! : )
We MUST keep a sense of humor through all of this. We just have to!

I can't not post about my Kate. This week she has had a lot of homework, and
three volleyball practices. Last night, she played ball until 8:45 and then had to come home and study.
We have been impressed with how she has shown maturity in getting her work done and giving
110% effort at practice. Tuesday, Coach called her out and used her as an example of how she "always tries so
hard and gives her all". Yay, Kate! Uncle Travis would be so proud.
This week, with the extra practice and the homework, she has had a taste of what next year will be like, as
Middle School requires more work and studying each night......
and that crazy, wonderful, dedicated, exhausted kid said she is ready for it! : )

Thursday, April 19, 2012

Oh, belly!!

Elizabeth's abdomen tells a story in itself. Many, many scars, one of which travels from sternum to belly button.
I remember after one of her surgeries, the surgeon told us that if she got into her teens and didn't like the way her body looked, plastic surgery would take care of some of the scars. So far, they haven't bothered her very much. They have been there for as long as she's known, growing in quantity, those reminders of all she has been through. In a blessing our memory affords, she will not remember most of her surgeries- but these scars will tell her story.

Her belly, for about three years, has been so flat; much too flat and sickly-looking. Even seeing that warrior tummy daily, it still would shock me sometimes to see how thin she had become.
Tonight, I could not stop staring at her tummy while I helped her shower and then flushed her IV line. If she had been a baby, I would have pinched her skin and blown raspberry kisses on her little pouch of a belly. Because, for the first time in so very long, I can see that she has gained weight. More than just the number on a scale, there is a physical difference! I have tears as I write this.

I know that the TPN and Lipids through her nightly IV feeds are responsible for this, and I know that now that we have stopped the TPN/Lipids it is highly unlikely she will be able to maintain this weight without her getting a G-tube and receiving the extra 900 calories a day through it. Seeing her grow, I am just so happy and it makes the idea of agreeing to a tube if we need to, easier.
AND, if she can maintain this weight and even start to gain again, she will start to grow in height as well. That I can't wait for!

Just so, so happy to be in awe of her belly, tonight!

Practicing our smiles..... we have to be audience-ready for
a media event we are participating in tomorrow at the hospital.
I would rather be in labor than have pictures taken of me, but it is fun and important
to give Liz happy things to associate the hospital with.

Wednesday, April 18, 2012

Nine, Nueve, Ku, Neuf. NINE!

               Look who has gained NINE pounds since February. NINE POUNDS!!!
 I can't tell you how huge this is! Actually, I can..... it is as huge as having a whole team of doctors and nurses and dietitians working together, having to be on TPN and Lipids, many medications, and a whole lot of patience. THAT is how huge it is. It is huge and it is wonderful.

Over the last week, some decisions have been made regarding Liz's care. First, in terms of GI, we are stopping the TPN. There has been much talk about putting in a G-tube, and we went into yesterday's GI appointment ready to hear the doctor's plan about that. His plan, though, is not exactly what we thought. He would like to stop her nightly TPN (IV feeds) and give her two to four weeks to show us what her body will do. We are not expecting her to gain weight as she has been while on the TPN- that is just not realistic. BUT, she needs to be able to maintain her current weight.
TPN is risky. TPN is a band-aid for a patient like Liz, and we knew going into it that the team did not want her getting IV feedings for longer than 2-3 months. The GI team was trying to give her body a boost in nutrition and weight by using the TPN, rather than have the Gtube placed.
Her Prealbumin is still low and her doctor is watching that closely and that number will play into his decision in the next few weeks as to whether or not to go ahead with the Gtube.
I was SO happy to hear that we aren't going straight to the tub, but her doctor reminded me not to get too excited, and that we "still have a lot of work ahead."
Candidly, none of us are expecting Liz to be able to maintain her weight. Her TPN& Lipids add 900 calories a day to her diet. I don't see how she can keep up with that with only by-mouth calories. She has such a wreck of a GI system, but we all think that trying this before going to the tube is worth it. Even if only for her mentally. There is a tiny chance she can do it and miracles happen- so I am holding onto that! Gtubes are not awful and I know the good they do for patients. BUT, if we can spare her having to have one, I want to do that! She has been through so, so much- at this point I want to give her body every chance to be as "normal" as it can be. And while gtubes aren't the end of the world, they aren't normal. I'm holding out, and I am glad the doctor is too. Even if it is only for weeks.

It feels a bit overwhelming to balance the urgency and importance of her weight, with not letting her weight and food consume our thoughts. She needs to believe that she can do this, but at the same time, I do NOT want Liz to focus so much on her weight. Such a balancing act.
The team has told me to be prepared to not take this personally if she can't maintain this weight. That is difficult to grasp, as I am the one preparing her food, being educated and trained on how to increase her caloric intake, and caring for her.

Phew! That is a lot. In short, the next two weeks will be telling and we ae praying that Liz's body will hold onto the weight and we can avoid having the Gtube.
Her PICC line will stay in for another month, in case we need to use it for any reason. Please keep praying that her line stays safe and infection free.

And, other decisions-
*Liz will go to the OR Procedure Room to  have another scope (Endoscopy) next week and have a bravo chip placed.
* I decided to stop IVIG. Eeeekkk! This was a big decision because there have been differing opinions from her physicians. After last month's infusion took such a toll on her, and because we need more testing that cannot be done while getting IVIg treatment, I made the call and cancelled this month's treatment. I am going to make a certain doctor VERY upset by doing this, but Liz is my child and I get to decide what I think is best for her, given the information I have. My back has been against the wall many times in the past two years when it comes to her care, and I am getting better at holding firm and making the tough decisions.
So, after IVIg, a patient must wait two months before testing (because IVIg is putting things into your body that your body lacks, so tests done while on IVIg will reflect that. You need at least two months without donor product in your system to give a true reading of what your body is doing). In May, she will get her Pneumovax vaccine (her body resisted it before). She'll have titers testing done to check counts (immune system counts, mostly). She will have specific white blood cell testing done.
Making the decsion to stop IVIg, especially during flu season, was not done lightly. I have to just pray I have made the right choice and pray that we can keep her safe from those germs now that her immune system is not getting extra help from the IVIg.
*We are leaving a specialist she has been seeing and she will now be seen by an Immunologist at CHLA. We saw this new doc for consult a few months ago, and I liked him VERY much. He is so respected by other Physicians, and his recommendations are what all of her other specialists agree with. I HATE switching specialists, but once again- I need to do what I feel is the best thing for Liz, even if it is uncomfortable.
*Liz will not go to school this year. Boo! I was hoping to get her back for May and June, but it is wise to keep her out of school, and we will just focus on the fact that we are getting her healthy and ready for the next school year!

Thank you for praying for our little (getting bigger!) Liz. The days seem to flow into each other as we go through the monotony of constant care for her and I sound like a broken record coveting prayer on her behalf,  but we value each and every prayer!!


                         It has been a few days since I've posted. I've been busy being a mommy.   Appointments, chores, errands and volleyball. Exhausting, but one day (which I know will come much sooner than I think), I will miss the chaos and fatigue of being a busy mom. Cannot even think about that or I get too sad!

6:00AM Volleyball. Kate was feeling the pain of the early morning!

....but by 6:45, she had her game face on!

I cannot express enough how much I love my time with Kate. I have been so lucky to have my
sister and mother-in-law stay with Jackson and Liz on most tournament days, so that I can devote a whole
eight hours to my sweet Kate.

She loves my kisses SO much! Agony!

Saturday, April 14, 2012

For you, Spence!

Do you know what today is? It is Spencer's ONE YEAR CANCER FREE anniversary!! Hooray!!!
I have tears as I write this, because I am so happy for our sweet friends; for brave Super Spence; for my Holly. I am glad to blog about Spencer tonight, because I know that many of you prayed for him.
You are looking at strength.
Spencer and Liz have a bond and are some pretty powerful, enduring, brave,
FAITHFUL, strong kids!

Last July, the Gooch fam visited California. Another one of Liz's long hospital stays threw off our plans for days together, but we managed to have some fun in Liz's hospital room.....and maybe almost get kicked out of the place!
Aunt Holly is a naughty influence when it comes to motorized hospital beds.
Rockin' their Super Spence shirts. We prayed and prayed.
As bad as it was before, we never dreamt Liz would now be facing some of the same things Spence had to endure.
But if Spencer could take on cancer, surely Liz can get over all of this stuff.


    That Super Spence beat stage IV inoperable cancer! Eventually, Soon, Someday came.
     We love you Gooch family....and we'll continue to pray.
Annnnnddddd..... Dear Nate Gooch- please send Holly and the kids to me again this Summer! It is essential to my mental health, and we need a July do-over. : )

Friday, April 13, 2012

They left me...

My mom, sister, cousin, and baby Harper are back East for my brother's fiance's Bridal Shower. Those girls seriously left me! I wanted to join them and make the trip, but it isn't wise to take Liz right now, and I couldn't leave her home for five days. Boo!
The biggest point of this whole post lays in the first sentence.... "my brother's Fiance." Someone is willing to marry that boy! Kidding. Kind of. : )
In reality, Travis is a wonderful man and he will love Brooke respectfully and wholly.

Some of you know that my parents planned on naming me Brooke Allyson, and my mom changed her mind after delivery. My dad was set on the name though, and has called my Brooke since the day I was born.... but now there is a real Brooke joining this crazy family.
Harper's first hockey game. Put a beanie on that baby, Megan!

Emily and Brooke

Trav scored the first goal of the game. Harper is good luck!

Travis and Brooke. Cannot wait until July!!! We will be there, no matter what!

Wish I was there with you girls!


Jackson slept with his shoes and robe at the end of his bed so that he could be ready
to dash and get the hidden eggs. Super cute!

Awww, preparation paid off.

Kate was sweet to let him get some of the eggs that were too high for him to easily reach.

....and then there is Elizabeth. Every man for himself.
One of my favorite memories is of Elizabeth and Kate at the MOMS egg hunt. They were
about three years old, and while Kate ran and hunted for eggs, Liz stood by their baskets. As soon as Kate would run back and drop her eggs into her basket and then run for more, Liz would casually lean down and take Kate's
found eggs and place them in her own basket. She didn't move a muscle and yet had a full pot.
I should have known then..... Liz is high maintanance, smart and charming at the same time.

It was too early for Kate

Jackson's first saber

Get your bum off my table, pretty girl.

Kate has now enetered a stage of refusing to smile for pictures and being totally annoyed
when I request one.....

.... I take them anyway.
Happy Easter, from my precious family.
      Easter is one of my favorite days of the year. I love everything about it! Last year, Liz and I spent it in the hospital, but this year we were home! Not only home, but home and she was feeling good! So good in fact, that we made it to church. Ahhh, church. I needed it and was so happy to be there. The kids were excited to see friends and I totally soaked in the music, the Word, hugs from loved ones. It was awesome.

Wednesday, April 11, 2012

Very frustrated with my computer as it isn't allowing me to access my blog. So, this post from my phone will be short. It is important to write even a short post because I am coveting prayer for Liz. Her counts came back and they are still low. Her Pediatrician asked me to prepare myself for her Gastroenterologist to tell me it is time for a G-tube. Today, the nurse practitioner who deals with the TPN and Gtube kids advised me if the same. Her Prealbumin is still low, lower than when we left the hospital, in fact, and though she has gained weight on the TPN, her Prealbumin is nowhere near where it should be. I will explain more when I can write more, but for now please keep praying for our Liz. Liz's docs have also advised not to put her back on school in May or June as I was shooting for. So sad that she hasn't had any of her 5th grade year. I love my time with her, but I wanted some normalcy even if only for a month or two. We'll get back to normal... it will just take longer than I want.

Monday, April 9, 2012


Lots of praying going on over here..... Liz's home nurse came this morning to do a dressing change and draw blood. The courier just picked up the vials and now we pray that her counts look better this week. More specifically her Prealbumin should be up from last week- it needs to be up! Jackson and Kate are on Spring break this week and I'd like to go to the movies and a few indoor places during the expected rainy days- I'll feel much better doing that if Liz's Neutrophil count ( neutrophils fight infection)is better this praying for that. And, we are praying for the special testing being done on the bone marrow biopsy samples that were taken two weeks ago. Liz's marrow is SO mimicking Myleodysplasia (MDS), that once again her marrow has been sent for Cytogenetics and FISH testing. We are praying hard that the diagnosis does not come back as MDS. Please pray with us.

Friday, April 6, 2012

"Those Moms"

"When a woman rises up, her energy is magnetic and her sense of possibility contagious."

I have been thinking a lot lately about the women who have come into my life over the past few years. I am fortunate to have many strong women around me, to offer wisdom and influence on many things.
The women I have been thinking of lately, though, are mothers; mothers who have been given the awesome (in every sense of the word) role of caring for a child who requires extra special care. Mothers who God looked at and said "Awww, you. You can care for this child in a way that another may not."

I have been hesitant to call myself one of "them", just as I have been hesitant to acknowledge truly how sick Liz has been. There is no denying though that I have become one of them. I realize that each time I catch the eye of another mother like me, and we exchange a smile in acknowledgement of how we can understand each other in some way. I realize it every time I sit in the OR waiting room, hands clasped around Elizabeth's favorite blanket, and see another mother in the same position.
A new friend said it best- "It is kind of like a club. A club you would never want to be a part of, but you are grateful is there."
I met a new friend, who's son is very, very sick with a very rare disease. This woman, J., amazes me every time I read her words or see her. Last week as we sat talking, I kept glancing at her arms....she was literally holding her son (who is not small) up. How many hours she spends holding her precious boy; how many hours she pours so much of herself- her energy, her smile, her voice, her strength- into her son. I stared at her and I wanted to cry. Not because of how very sad her reality is, but because of how her strength amazes me. Our talk was on the heels of learning of Liz's marrow results, and was right before an appointment I was dreading. Watching J, though made me think of the quote above. Her energy, her ability to keep going on days she must feel so weary, is magnetic. How lucky am I to know her and have her influence?

This "club"- "those moms"-  are women who I know will relate to certain things that some of my other dear friends may not. They know the medical jargon. They know what it is to fight for your child's life. They know, just by a glance, how to tell one another to keep going. They know an exhaustion that surpasses any fatigue we've ever known before. They know the amazing life that comes from having a child who has been sick. They know that life can be so difficult, but life is extra sweet when you have learned not to take a minute for granted.

If you know me, you know I would never want to be a part of something that focuses on the negative. The amazing women who have come into my life are anything but that. It is not a coincidence that women who have been dealt the horrific heartache of having a sick child, can be optimistic and joyful. One of the things about these moms that I appreciate the most is that to them, life is wonderful. My goodness, many people would look at the lives of these women and perhaps think of mostly sadness or awful things. Sure, there have been many times I have commiserated with friends like these about frustrations and sadness; about anger and doubt. But that is not who these women are. They are positive and full of life. When I have been in a room of these women- even a hospital room as one of our children has laid in the bed, sick- there is more laughter than tears.
This club-this wonderful group of mothers- is strength and inspiration, influence and courage, energy and support, empathy and encouragement, bravery and love. They are a reminder to never give in or give up, and as I watch them care for their sweet children, I am in awe.
For some of us (for me!), our children will get well. For others, you already know that the reality is that your child will not. And there are the mommas whose child has already gone on. And still, He was right. He looked at us and said "Awww, you can care for this child in a way another cannot."

To you- "those" moms who have come into my life.... I think you are amazing and you inspire me.

Thursday, April 5, 2012

Kate and I spent Friday-Sunday at her Junior Olympic Qualifier Tournament in Anaheim

She plays in "the pipe", and is a great passer/bumper.
One of the best athletic qualities about Kate is that she is totally coachable; so eager to learn and get better.
She surprised herself this tournament with the points she scored.

Kate's team was eliminated on Sunday, and as if three days of play wasn't enough, her team met
up to play some sand volleyball on Sunday afternoon.

While Kate played ball, Liz and Jack had fun on the swings......

Awww, the sun and wind felt so good. Yay for fresh air!

Joyful, joyful Jackson. Look at that giggle!

I love his toothless smile.

How can I not be happy around this little boy?!
      The weekend was good! I just soak in my time with Kate, and it makes my heart full to see her play a sport loves and her spending time with her friends. I was so hesitant to put her in Club ball at such a young age, but it has turned out to be a great thing for her during this challenging time with Elizabeth...she has her own thing away from all of this, and she is happy when she is playing. It is a normal thing amidst some not so normal stuff, and I feel fortunate we are able to give her this.
The park was totally spontaneous, and to tell the truth, I didn't want to go. After three long days of volleyball, I just wanted to get home and rest and do chores. I am so glad we went, though. The time in the beautiful weather was just what Jackson and Liz needed.....and me, too!

Monday, April 2, 2012


I am unable to use my laptop tonight , so this post will be short as I am blogging from my phone. I don't feel like writing, but for those of you who still read this; who still pray for our girl- here is an update: It has not been a good day. I have tried to keep positive and even played a little Peak and Pit with myself ( a dinner table game we play as a family, telling each other the good and bad of our day). The good- I got to meet a new friend in person today ( more on that another time) and I was inspired by simply watching her with her brave, precious boy. Another peak is that we could have been given devastating news today, and we were not. So then, why do I feel so devastated? I think it is because I am exhausted and beyond frustrated and sad. Elizabeth's biopsy shows that her marrow has not recovered at all. Not even a little bit. Ugh! It is still hypo cellular and although there is "no convincing evidence of malignancy", her cells are misshapen and there are some new additional abnormalities. The smears have been sent off for FISH and cytogenetics testing, to once again rule out Myleodysplasia and other disease. I cannot take hearing that we need to just continue to watch her labs very carefully. Fix the marrow! If only it were that easy. As if I wasn't feeling a put enough, tonight Liz's Pediatrician called to let me know that her labs today show that her Prealbumin has dropped to 13. What in the world on?! On TPN and Lipids, her Prealbumin ( a protein nutritional marker) should be going up, not down.... certainly not anywhere as low as 13. Much more to write, but I need to go prep her IV for the night. If you are still following Liz, thank you.