The Natalie & Alice Fish Story

We are the Fishes. In 2011 two of our five children; Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). Their condition is so rare that only two cases are reported in the U.S. each year. Both girls have endured much, and have spent most of their young lives in and out of hospitals due to common illnesess a healthy immune system would overcome. The required treatment for our girls is a bone marrow transplant.
Although the new marrow could mean a normal life for them, it will be a long and arduous road. This blog is to share our experience as parents and the courage of our children.

Sunday, December 23, 2012

A Week's Worth of Posts

Update on the Girls as of Dec. 23, 2012

I was able to converse with neurology regarding Natalie's seizures.  We decided to leave her medication the same and carefully document every seizure that we can.  She was having a rash of them until I called to speak with the doctor, then they went away.  Therefore we will let things rest unless they stir up again.

Natalie has figured out many tricks that help her deal with her seizures.  If they occur at night she calls for Matthew because his room is close.  He will jump out of bed and rub her back until they go away.  One night I heard her yelling, "Matthew, Matthew, hurry, Emergency, Emergency!!!"  I quickly came to help her.  I was proud of her for seeking help without getting up to walk.

She has always found security in Matthew.  It's a sweet thing to see how he cares for her and comforts her when she needs it.  Four years ago, when Natalie came home from the hospital after three weeks on life support, she held Matthew's hand every moment she could for weeks.  Her memory of previous relationships were erased but the relationship between her and Matthew remained.  Tyler and I were thankful that she was able to have someone to cling to for comfort until her memory began to return.

Alice continues to puzzle us.  She is vomiting one moment and fine the next.  She is still scheduled to receive the first of four treatments the day after Christmas.  We pray that all will go well.

Painting Christmas gifts.

Alice calls herself Purplicious...everything has to be purple...even the dress she is wearing.  It's backwards and two sizes too small.
Bored?

Dec. 19th

Matthew and Blair had Christmas programs at the school.  Matthew was in the Gingerbread play (actually it was a week ago).  It was the cutest thing.  He was so excited and practiced his two second part over and over, each time with more animation.  He made us promise that we would be there no matter what.  It was worth all the promising.

Blair's Christmas program was wonderful as well.  It was cute to see how quietly excited/nervous he was to preform.  I asked him if he felt ready; we have been working on memorizing a poem, in which he did memorize, however, just before the program I asked him, "Okay Blair are you ready to recite the poem?"  He said, "I don't have to remember all of it...cuz everyone else will...I will just say what they say."
I thought to myself...uhh that is something we are going to discuss in more detail.

We have been struggling with our Christmas tree.  Only one strand of lights is working.  The tree is missing some parts...it's the first tree Tyler and I purchased when Natalie was a baby.  I found it at Wal-Mart for $9.00 so I shouldn't complain, however, for some reason (in which we know) this year it looks uglier than other years.  Evie has made it her agenda to terrorize the tree.  Several ornaments are broken and what is left are on the top half of the tree.  Blair suggested that I put a force field around the tree, to keep Evie away.    The kids don't mind the ugly tree, they think it's awesome and exciting.

We are looking forward and hoping to be all together this Christmas! :)

I quite trying to make the tree look good.  Once I find an ornament I just put it away--not back on the tree.  It's a vicious cycle if I replace it to the tree...Evie is a determined little girl.


The Gingerbread Play

Adam and Matthew

Matthew has become great friends with Adam

I love this Gingerbread boy


Looking good Blair



The whole Kindergarten class



Dec. 20th

Today is our Anniversary.  Tyler and I have been married 10 years.  We decided to take the kids sledding.  They had a blast...as well as Tyler and I.  We figured sledding was a great way to celebrate ten good years and five great children.   Tyler and I love the snow and everything about it.  We both grew up skiing, and even spent our honeymoon skiing.  The second time I met Tyler was at Jackson Hole on the best powder day in history (in my mind anyway).  He is an awesome skier, I was impressed....four long years later we were married.

Ice feathers on the lake...we walked on the ice, it was neat...very sturdy.  The  children were fascinated with the whole thing.

Happy to be sledding.  I have some great videos of the other children , however, I will have to post them later.  I am having technical difficulties...it doesn't take much for me to experience this type of difficulty ;)


Dec. 21st

Happy Bone Marrow Transplant Birthday Natalie!!!  One year ago today she received her transplant.  It seems to have passed so quickly on one hand and on the other it seems so long ago.  It was a sweet moment yesterday when we were in the mountains sledding with the kids, thinking that one year ago Natalie was too weak to even walk and talk, and now she is laughing and playing in the snow...continuing to run her sled back up the hill for another run.  I was a very special moment for Tyler and I to witness.

We asked what she wanted to do to celebrate her Bone Marrow Birthday.  She chose to play games as a family.  We played hide n' seek, UNO, and Mustard Ketchup.  Many of the games we play are invented by the kids...usually Natalie.  Mustard Ketchup is a favorite of mine.  I have no idea where the name came from, because mustard and ketchup are not involved in the game.  It's a game of tag, in which you claim a sofa or seat for safety until someone joins you...you then have to leave and find another place to sit before the person who is "it" tags you.  It's a great way to burn energy.  We love it.

We felt it appropriate to give Natalie a haircut on her year anniversary considering that she has grown a killer mullet.  I guess it crept up on me.  I didn't realize she had such a mullet until we had a grown up 80's game night with some neighbors and someone came wearing a superb mullet.

She loves her new hair cut.  She tried to convince me to make her bald again.  I talked her out of it :)

Once I cut Natalie's hair I was feeling pretty good about myself and my untrained scissor hands, so I gave everyone a hair cut.  Evie's new cut might just be the most unique.  I should have consulted with a professional.  She's cute anyway, so I will chalk it up as a learning moment.


That little pony tail is about to be snipped, Evie wouldn't hold still for a second.


Not sure what to think.  The mullet is gone but now I have another  problem.

Evie's first hair cut...such a cute little curl.
Here lies Natalie's mullet on the counter

I figured this was the easiest way to do it.

Not too shabby...I think I did a great job.

Alice didn't need too much cut.  It's so curly that it blends well enough.  I just snipped a little bit.

Alice's curl, and fist hair cut since transplant.

Looking Good Blair!  Matthew ran off before I could get a picture, I will  take a picture of Matthew  tomorrow and add it to this post.






Monday, December 17, 2012

Clinic Update and How Old Is Jerome?

Natalie and Alice both came to clinic today.  Everything went very well; even Santa came to visit at the doorway (germ precautions).  Natalie tried to blow his cover by saying that Santa doesn't wear glasses...we had to remind her that he wears them off and on...just like Mom and Dad (contacts). 

For some reason when Natalie woke this morning and even before bed last night she didn't have any anxieties or meltdowns about going to clinic.  She had a nice little pep talk by her Aunt Jessica last night and maybe that helped.  I better call Jessica and find out what she said...I've gotta know! ;)

Natalie did have labs, enough that required a needle stick.  She tried some freezing spray which may have taken the edge off a bit, however, it was still hard for her, but she did much better than the average blood draw.  We always request our favorite phlebotomist Elena.  She gets it the first time..always!

Natalie's counts are good.  Her cough is manageable and her seizing has improved over the past couple days.  The doctors talked again about the possibility of her returning to school soon.  What is soon?...we don't know, it depends.  We know it will come together when she is ready.

Natalie dropped another medication today; no more Acyclovir.  The only medication Natalie requires at this point is Keppra (for seizures) and her Asthma inhaler as needed...and vitamin supplements.

Alice still has low counts, but seemingly well.  She continues to have terrible diarrhea throughout the day and night.  Tyler and I feel like she is having some graft vs. host disease.  The doctors are not overly concerned at this point.  Alice is scheduled to start what we hope is her last round of chemo.  It is a type of chemo that is targeted only to kill her B cells.  She will not loose her hair and have the terrible mouth sores, etc. like in the past.  It will be given over a four week period and done as an outpatient service.  We will be spending plenty of time in Clinic over the next month.

We persuaded the doctors to wait until after Christmas.  She will start her first of four treatments the day after Christmas.  We pray that she will manage well and that the treatments will be successful.  We plan to run the infusion very slow and watch her carefully.

HOW OLD IS JEROME? 

A couple days ago Natalie asked me how old  is her elephant Jerome?  I thought about it for a moment and discovered that he is almost four years old.  He was given to her by her great Aunt Patsy during a scary time in the ICU.  Natalie needed something to snuggle and Jerome came just in time.  Jerome hasn't missed  but one or two hospital stays since. 

When I told Natalie that Jerome is almost four, she said, "but mom, he looks older than that."  I told her that when someone is loved so much they sometimes look older than they are.  Then I thought for a moment and decided...no wonder I myself look/feel older than I am...I've been loving (including stressing over) you (Natalie) so much.  It goes both ways.  Jerome has needed additional stuffing over the years, has lost his arm at least twice and has been stitched back together at least three times.  There are days when I feel like I need some stitching and stuffing as well. :)  It's true I suppose, we all need mending.

Today when Natalie was in clinic, Sandy the secretary saved out a darling elephant for Natalie, knowing she was coming.  It was sweet.  Her new elephant's name is Olive, now Jerome has a girlfriend.

We are looking forward to Christmas.  There are so many sweet memories of last year that continue to pass our minds.  We have so much to be thankful for.  I wish I could share all the kind things that have been done for us...many in which we do not know who the kindness came from.  Tyler and I tell everyone that when we are still married and happy in the next life we will have everyone else to thank for it. :)...so true!!


Lots of fun stuff in clinic today.  They got Christmas gifts/stocking.  On Alice's right is her new cat named Scratch.

Playing Spot It.
Santa visits the hospital.  Natalie was studying him to see if he was the real Santa or not.  Even Santa has to wear a visitor badge.


Setting up the ice sculptures...I am not sure which organization does this, but it's cool.  They do it every year...at least I have noticed the past few years.

 
They are making trees and reindeer, and I think Santa's sled.

Looks cold.
Alice wanted me to make her a snowman with eyelashes.
Natalie made her snowman with olive eyes, a strawberry nose and a pistachio mouth.  Yummy!
Here is Jerome...he has no idea what he is getting for Christmas.
While at Grandpa Schellenberg's house...Natalie snatched up a bag of peanuts.  I thought maybe she liked them and wanted to pack a snack for the 20 minute drive home.  She packed them for Jerome. 
This is what became of the peanuts....they will be waiting under the tree for Jerome.
I have put it off as long as possible.  She is potty training with or without me.  I didn't want to potty train her while she has a central line, however, Alice is very independent.  

I went to dinner with friends...it was great.  Loved every minute of it.  We laughed about everything...told old High School stories.  Always a good time with the girls....the time always goes too quickly, the restaurant was closing, however, we had no plans of leaving.  Left to Right.  Me, Kat, Debi, Marianne, Cyd, Heather, Mindy, Jamie, and Monica.

Wednesday, December 12, 2012

A Break in Alice's Line

Last night when I was flushing Alice's line, her yellow lumen was stuck.  I pushed and pulled with the flush a bit and nothing happened.  I waited a minute and something moved... so I got excited and started to flush it more.  Well I must have got too excited because it popped/cracked and was leaking.  I clamped it and sterilized it.  I then took Alice to ICS and they repaired it.  We came home around 2:00 a.m.  The next morning Alice needed to go to clinic for TPA in her line to clear the blockage and so Tyler took her.  They spent most of the day at the clinic...and now her line works wonderfully.  This is the third time her yellow line has needed repairs.  It has been almost a year since this particular line was placed.  We are so pleased it has lasted this long.

Alice was more than happy to visit the hospital...three days in a row.  She loves it.

Each time I pass the Christmas tree in the hospital lobby I've noticed different patients observing it.  It makes me so happy when I see children in a hospital gown noticing all the familiar items on the tree...as these items don't look frightening anymore but sparkly.  It was worth it...all so worth it!

Tonight my friend Jill came to visit with her daughter Emily (who has SCID).  We could have talked for days--it was awesome talking about all the things we have in common.  There is something about talking with others who have been in your shoes...it's like therapy :)  Thanks Jill!  After a couple hours I went to inform Emily that her mother needed to leave...Natalie and Emily were having a great time.  It made me so happy to see Natalie happy.  The two girls have so much in common, they instantly became friends.

Great News....My phone was found...and in working order!  I like to think that the snow was just preserving it. :)  I feel like I have my right arm back now.  It's sad how dependent we become to our phones.

Thank you for your continued love and prayers...It's wonderful!!

Getting cozy, and hopes to stay a while.


Lisy


Monday, December 10, 2012

Clinic For Alice

Counts remained the same for Alice, ANC is 500.  We did not give her Nulasta.  Honestly, I was surprised and happy to learn that her ANC wasn't lower.  She is now off of Amlodipine (blood pressure med).  Her Cyclosporine dose just tapered another step today.  It's a wonderful thing to drop another medication from the list.  Alice is now currently taking 9 medications, two of them are still given through her line.

Rituximab is still on the back burner for Alice.

Natalie had an awesome day...she stayed home!  She never went to clinic.  Last night she did not fever...Hooray!  We decided to keep her home, which we feel was the right decision.  If the fever returns we will consider the panel of tests she was scheduled to have done today.

Tyler and I feel as though Natalie's hearing has worsened.  We are anxious for her next visit with the ENT.  We hope to find a way to help her hearing.  January will be a busy month for Natalie, she has visits with ENT, Neurology, Pulmonology, and Psychology.

Natalie went to the grocery store with her Grandparents tonight and picked out all her favorite foods.  She came home with oranges, mandarin oranges, bananas, broccoli, cauliflower, chicken legs, apple juice, carrots and Gatorade.  She had been complaining that there was nothing in the house that she liked. 

Tyler and I pulled the kids behind the car today on a sled.  It was a blast.  They loved it.  The snow is beautiful.  We hope the snow stays and that more will come.  Alice kept saying, "Faster, Faster."  When we came home she said my tummy hurts.  I asked if she wanted a pink bucket.  When I looked to the other side of the room where the bucket was, Evie had already grabbed the bucket and was handing it to Alice. 

Evie, you are so sweet.  Not many 16 month old babies are well trained in vomit control.  It's an art around here.  Alice has incredible control to wait for the bucket.  She feels a sense of security with the pink bucket.  Thank goodness for Clorox wipes..it makes sterilizing the pink buckets easier after each use.  I use several wipes a day.

Lisy

p.s. I have lost my phone in the snow somewhere.  I hope it finds it's way back.  Until then, if you need to reach me..call Tyler or email me.  lisyfish@gmail.com

Sunday, December 9, 2012

Negative Strep Test

Alice's strep test came back negative...thankfully.  Labs also showed that Rhinovirus is positive again.  This virus can stick around for a long time.  It's quite obnoxious.  For the average person it is the common cold.  For Natalie and Alice it means many sleepless nights, including diarrhea, nausea, fevers, coughs and headaches around the clock.

Currently Alice vomits between 3-6 times a day and has between 2-4 liquid diapers a day.  Natalie usually gets the hives on average 1-2 times every two days, due to panic that she may have to go back to the hospital (we think--it could be from something else too).  She also spikes a very high temp between 103-104 degrees every few days.  Our question is---could all this be from a silly cold virus?  Or is there more?  Tomorrow is clinic and we have decided to take both girls in to run some further testing, surely Natalie will not be happy about this.  At least we may be able to eliminate some possibilities and hopefully gather peace of mind that what we are currently doing is the right thing. 

It is a very good thing Tyler and I have each other, between the two of us we can function at the capacity of one.  For now one is sufficient, it's enough to continue on.  We are aware of each others needs and try to allow small outlets for each other when time and circumstances permit.  This synergy works best at night...we have to tag team the sleepless nights so someone can be available to start the next day.

This probably sounds sad, however, I need to include the details, even the not so fun details ...it's important.  And yes, truly it is hard but we are aware of our challenges and somehow they find their way into perspective when our focus is the "big picture"...this picture is easier to find when the small blessings are recognized.  It helps me to record on the blog...it allows me to label the many blessings that are amongst us.  Tyler has been able to do the same in his journal.  It helps to ponder long enough to establish an emotion that can be appreciated.

Last night I watched a Christmas video of the Nativity.  It was beautiful and peaceful.  I then imagined what it might have been like to live on the earth when the Savior did.  I immediately thought of my sick children.  I would have crossed over oceans and climbed mountains to seek after Him and place my children before Him to be healed.  I felt the most calm, peaceful and humble feeling as I imagined this.  I can only wonder how it may have been for those who experienced His presence.  I am thankful for the principles of faith and hope, as we do not live during His time of mortality...yet our blessings can be equal.

Lisy

Thursday, December 6, 2012

More Festival Pictures and an Update

Quick up-date.

Tyler took Alice to Primary Children's yesterday to have some testing done, such as a general viral panel and       cultures for strep.  She has been complaining that her throat hurts.  Alice is already on an antibiotic that is treatment for strep, therefore, if she does indeed have strep it would mean that she needs an adjustment in her medications, which may become complicated.  She has been very tired with nausea and diarrhea for several days.  We should hear soon what is or isn't discovered from the testing.

Natalie seems to have improved over night.  Still tired, but the cough has improved and she has been without fevers for three days.  Yeah!

Blair is feeling great and back to school.

The rest of the family is experiencing a syndrome called Partial Zombie.  We keep saying we need to go to bed sooner, but it's easier to say than to do.  Morning still comes bright and early, regardless of how sleepless the night may be.  Morning is a beautiful time of day, even more so when it is greeted with a full tank of gas.

We consider a good nights rest - a night in which we have no recollection of it. :)

Also I rounded up some more pictures of Festival.  Many people have asked if I had more pictures.  Thank you to all for your generous compliments of the tree...and thank you to those who helped make it and those who admired it, and especially to that person who purchased it. :)  We don't know who that is...but thank you.

Lisy

I wish now I had taken of pictures of each individual ornament and the garland.  It's hard to see in pictures the detail and even harder to see what it all is.

We made a big mess...we came prepared with everything imaginable, except I forgot to bring the tree stand.   

Getting the re-bar secured into the tree was the tricky part.
Little by little, it is coming along.  If you look close you can see three little evergreen trees on the right of the snowman.  Each tree is made of medicine vial caps from the pharmacists.  Nearly 500 pieces on each tree.  They ended up being so cute...it almost didn't look medical.

Each flip top cap on this star came off the top of a vial of medication.

These blue caps are used to protect the end of IV tubing etc.  We made lots of these type of ornaments with all different kinds of caps and colors.  Every time I look at these ornaments I can't help but think of Romney/Obama.  This is what we did while listening to politics.  We don't have T.V.  It's great we got so much done while listening to the news.

These orange caps come from syringe drawn oral medications. 

Mom and Dad Schellenberg.   They helped greatly!


Another great quote from a patient and family.  The  quote is inside of an IV fluid bag.

Almost done.

Securing the joints.

My mother Karen and sister-in-law Jessica.  Right hand ladies!

Monday, December 3, 2012

Week Overview--Alice's Biopsy Results


Monday Nov. 26th--Decorating Day.  

This was the day we set up the Heroes' Tree for the first time (at the South Town Expo Center--Festival of Trees)  It was a fun day, my parents helped as well as my sister-in-law Jessica.  We started at 10:30 a.m. and finished by 6:00 p.m.  It looked wonderful.

--Why such a project?  I mentioned a little about this project in an earlier post, now I wish to expound more.  In June I had this silly idea to decorate a Christmas tree using only medical supplies for Festival of Trees.  The idea derived from feeling as though this project could provide a small source of healing for Natalie and other children who feel such anxiety with particular medical supplies.  Many times I tried to forget about such an endeavor as I knew it would mean added work to our already busy schedule.  However, the thought continued to return to my mind and heart.  So, we jumped in with both feet.

Natalie made a statement to a friend of mine while we were standing at Festival admiring the tree.  She said, "This tree is made of all the stuff that I hate."  In the very same conversation, moments later she said, "This is my tree and I hope I get to keep it."  Natalie stood and admired the tree proudly...as I hope all the children will do when they pass it.  It was neat to see the motive of this tree come to fruition.

I got my wish...it was purchased and donated back to be displayed at the hospital.  Now the many children who should see it but are too sick to have been at Festival can now see the tree in the hospital lobby.  The tree lights cannot be on at the hospital for safety purposes, but I think it looks good anyway.

It was a fun project; over the past several months as we collected pieces the kids helped wash them in Clorox and sort them into colors and categories.  They had some fun with it.  And of course it wouldn't have happened without much help.  Thank you to those who helped me.

My camera battery was dead, thankfully Jessica had her camera and was able to get some pictures of the tree.  My parents have some good pictures that I need to get from them as well.










Tuesday Nov. 27th--Opening Night lighting of the trees 

What a fun night.  Natalie and Alice were invited to turn on the lights to all the trees on opening night of Festival.  Natalie even said a few words on stage.  She was so nervous, yet did fantastic!
This is what she shared, "I am happy to be here and light up the trees.  I am feeling better.  This past year was hard for me and my sister Alice.  Many people helped us.  Thank you for helping all the children at the hospital."

Alice didn't want to say anything in the microphone, instead she danced to the music.  It was darling.
 
Aunt Amberly found some beautiful dresses for Natalie and Alice to wear as they turned on all the Christmas lights.








Thursday Nov. 29th--Boot comes off for good

Alice's leg is great, healed nicely.  No more boot!  She still walks funny, but she will adjust to a normal walk again.  We are so happy she no longer needs the boot.  We were feeling so bad because she could take it off herself and honestly she had it off more than on over the past two weeks.  Now Tyler and I don't have to feel so guilty that she isn't wearing it.  Like many things as parents...we just do our best and hope and pray that it is enough. :)


Leaving the Orthopedic office...no more boot!




Natalie's creativity...she was so excited to show everyone the cool game she made--the marble maze.

The things you can do with a box...we get plenty of boxes from Homecare.








Saturday Dec. 1st--Fevers, Natalie and Blair; Alice has tummy trouble

It was great to put the stomach bug behind us last week, but now we are seeing another bug.  Blair came down with a high fever and a sore throat.  I examined him and sure enough it looked terrible.

Natalie has had random high fevers as well.  Her lungs sound clear, her throat looks good, her ears do not hurt.  We are a bit puzzled.  We worry with her neurological susceptibility during illness and fevers.  She seems to be aware of it as well, because I can tell when she begins to seem a little loopy she starts to count to 20 or engages her mind in a manner to keep it focused and steady.  This is a great thing she has discovered, it has helped her.  We are still learning much regarding this new territory we have ventured into with Natalie.  She has a neurology appointment coming up.

Over the past four weeks she had approx. 5-6 small seizure episodes.  Since being on Keppra they have become much less frequent.

Often when Natalie spikes a temperature she will also break out in the hives.  It's not fun at all, she becomes miserable.  Thank goodness for Benedryl.  We are beginning to think that she gets the hives because of anxiety of thinking she may have to go to the hospital.  The moment she feels sick she also panics that she will have to be admitted.  We started telling her that she will be just fine and not to worry...the hives have improved.

We have been consulting with the doctors regarding these fevers.  Because she no longer has a central line we are monitoring her at home.  It is better this way...of course if she worsens, story changes.

The truth is (most likely) Natalie and Alice will often become sick over the next few years as their new immune systems begin to build immunities.  It's like being a newborn all over again, yet this time they will be able to overcome and heal without incredible intervention.

As for Alice she still has random episodes of terrible nausea and diarrhea--no fevers.  Maybe it's a virus, maybe it's to do with her marrow, maybe her GI track it still healing...who knows.  She manages to still play and have fun all the while.



Monday Dec. 3rd--Clinic for Alice--Biopsy Results, Pediatrician for Blair and Natalie

Busy day.  Both Tyler and I went to clinic with Alice as we needed to discuss with the doctor the treatments Alice may still require.  It was a needed conversation.  We decided to wait another couple weeks before starting more chemo (Rituximab) treatments.  We also chose not to give her more Nulasta.  Her ANC today was 500.  She will need to be seen weekly again to ensure her safety.

I wish I could just zap all the information in my brain onto this post.  It's hard to explain all the material we discussed.  To sum it up...Alice's body might have more antibodies that need to die in order for her to benefit completely from the new marrow.  Her biopsy indicated that she has 90% cellular mass.  This is a good healthy percentage for her. The marrow looked healthy and great...as good as any.  The question is why are her white cells being destroyed and where are they being destroyed.

At this point we can only try some things and see how she responds.  Hopefully we don't have to dig too deep to find the cause.  The news does not come as a surprise as we have always felt like there are other steps that need to be taken in order to get her on the road to complete recovery.  We pray that it will be an efficient and productive process.

Here is a great and simple definition of Rituximab:

Rituximab (trade names Rituxan and MabThera) is a chimeric monoclonal antibody against the protein CD20, which is primarily found on the surface of B cells. Rituximab destroys B cells, and is therefore used to treat diseases which are characterized by excessive numbers of B cells, overactive B cells, or dysfunctional B cells. This includes many lymphomas, leukemias, transplant rejection, and some autoimmune disorders.

Rituximab is a man-made antibody that was developed using cloning and recombinant DNA technology from human and murine (mice or rat) genes. 

Both girls have already had two rounds of Rituximab.  We are familiar with this drug, still it isn't easy to jump into, however, we feel it may be necessary.

Okay, Grandpa took Blair to the pediatrician--Blair has strep.  He was given penicillin and should recover shortly.  When Tyler and I came home with Alice, I took Natalie to be checked for strep as well.  Nothing came of it.  Her fevers are still a mystery.  Again, a probable virus.  Good news, so far tonight Natalie has no fever, just an asthma flare, which can be contributed to the poor air quality as we were out and about today.

The Real Rapunzel

Look how fast her hair grew.  Everyone had to come peek in the room to see Rapunzel...she played the part so well.  She couldn't wait to wear her dress to the hospital.

Play time

Mr. Snowman at his new home...the hospital.

The tree.

That is a stethoscope on an IV pole

Hospital dolls

Feeling better for a moment.


More news to come...I will try to post more often.  

Lisy