In the morning I am headed to Seattle.  When I think about it I feel sick inside.  For along time after Lucy passed away all I wanted to do was go back to Seattle.  I thought I would feel close to Lucy there because all of my recent memories are there, with her.  Looking out the window down on to the playground and counting the days until she was out there playing.  Giving her baths and getting all wet.  Getting up at night to give her her snuggly and watching her tuck it under her chin, her cute little cheese smile when I did anything.  Just the thought of going there and not seeing her or being able to hold her is all most to much.  I am afraid.  She was mine and now she's gone.  I miss her so much.  It's all most to much for my brain to handle.  I can not yet grasp it.  Everyone talks of growing and learning and being happy this is not happy.  How do you go on with out a baby like Lucy. 
I hope to learn everything I can about Lucy's medical situation.  The what's and why's.  I feel like I need to but at the same time I feel like maybe I wont like what I hear.  All I know is that Lucy is special, in every way.  I hope I did all I could for her.  I really wish I could have a do-over.  Maybe I would get it right.  I hope someday things will feel less empty.  Lucy had a perfect donor.  One that was born before her.  If if if...I could if myself to death! 
I am glad I have my family.  Baby Ezra, Gabe, Lilly, Mackenzie, Sharlee, Nicole and Eden.  I am thankful for my friends who push me.  They push me to smile.  Ezra had to be sent to me to keep me being a momma.  Lucy waited to go so that he would be here, for me.  She loves me.  My kids all love me and I love them. 

To Lucy:  I will never be that lady who had a baby pass away.  I will always be LUCY'S MOMMA.  I will keep your name mentioned everyday.  I will make you happy.  I wish I could be with you but I need to help your brothers and sisters grow up.  I hope to see you soon.  Strike that.  I WILL see you soon.  I love you baby of mine.
Love momma

I have videos of Lucy on our digital picture frame next to my computer.  She is so beautiful.  Her nails are painted and she has a bow in her hair.  In one video she is laughing.  I want her back.  It is so hard to think that there is nothing I can do or say to have her here.  Nothing.  I cant go somewhere and bring her back.  I cant hold her.  All I have is some pictures and a very videos and my thoughts.  Its not fair.  Other kids make it through the same disease.  Why not Lucy.  I hate feeling like the only way to be happy is to have Lucy back.

To Lucy, momma misses you.  I miss coming back into your room after getting some food and seeing you flap your arms and feet because you are excited to see me.  I really liked giving you baths because when you laid back in the water you would kick and splash and get me all wet.  Yeah splash and play.  I remember when we got our big room on the SCCA floor and you could go to the window and see outside.  We could watch the kids play.  So fun.  I couldn' t wait to take you out there to sit in the sun.  I wish I couled have made things better for you. 
Love, momma

I search every night for information on Lucy's disease.  I often come upon web site and blog pages for other families with SCID or other immune problems.  I read every entry.  I feel sad when the entries stop and I don't know what is happening with the child or the family.  Parents will stop writing when their child passes away but that's when I wanted them to continue.  How are they doing?  How do they feel, how are they coping, what is the rest of their family doing?  Lucy is so special to me and talking about her is both devastating and uplifting.  I miss her more with each day.  I realize that she is happy and healthy now but I am not yet either happy or healthy.  Lucy loved chips and when she couldn't eat doritos it was ice chips.  Her eyes were big and so was her smile.  I don't understand what happened to her lungs.  Am I crazy for trying to understand why this happened?  The more I read about it the harder it is to understand it.  Why can't we fix a persons lungs if we can give them a new heart.  My head hurts a lot and sometimes I feel like I am going crazy, maybe I am.  I want to make a difference in this life.  I want my other children to grow up happy.  I love them and try everyday to make things normal for them.  I hope I am succeeding. 
We (not so much me) have started a non profit organization in Lucy's name to help out other sick children and their families.  On December 5th at Bear Tooth Theater we will be putting on a Celebration of Life concert to kick off the organizations fundraising efforts.  My brother in law, KALAI, will be headlining and the band H3 will be opening.  I am very excited to do this for Lucy's memory.  SHE WILL NEVER BE FORGOTTEN AS LONG AS I LIVE!!
I love my family and my friends which are my extended family.
To Lucy:  I miss you little girl.  You are a princess.  I have your pictures everwhere and think of you every second of every day.  I miss not being able to touch you.  I miss everything you wont being doing.  I miss dressing you up on Halloween and putting bows in your hair.  Today I am starting to write in this blog for you.  Someday I will read it to you and we will play together and watch blue's clues.  I am so sad today.  Gabe and Lilly talk about you all of the time.  Lilly wanted to buy you some new clothes because she said you would be beautiful in them.  You are beautiful.  Mommy loves you
I hope I can make it through another day.
Love you.
Momma

Lucy Bell went to live with her Heavenly parents on Wednesday August 27th.  We miss her more than I have words for.  Her lungs would not recover.  She was a gift to us.  I am sad.

On monday Lucy had her simulation.  They wanted to keep that appointment because it's hard to get one.  Simulation is done to prepare for radiation.  They put her under and do a bunch of measurements in the radiation machine ,which is just like a powerful x-ray, and prepare some kind of faom stuff that she will be put in when she gets her treatment.  That went good she takes a lot of meds to put her out and she comes out of it quickly.  It always surprises the doctors.  She has a high tolerence to meds.  Just like her mom.  then when we got back from that, oh ya, we leave childrens and go by ambulance to University Hospital.  That is where she will get radiation treatments.  Anyway after we got back I went to my doctors appointment and the baby will be here on Saturday.  After and amnio they will induce me.  I hope the epidural will work this time.  I just needed to not be pregnant to better take care of Lucy.  I hope this is the best baby ever.  He will need to be.  We have set iup a bed and swing that we are borrowed from the hospital in Lucy's room.  All we need now is a shower.  I have to leave Lucy's room and go to a different floor to use shared public showers.  Yuck.  Anyway....Today Lucy had her lung biopsy.  They decided to do a lung biopsy because her lungs are sick.  they don't know why.  They Lung doctor said her damage is moderate to severe but that given time and treatment she will heal.  She will need to be followed for years by a lung doctor but he said that he does comw to Alaska.  The surgery went well.  They neede to use a breathing tube which sucks for her lungs but is necessary.  And because her damage is not just in her airway they needed to go in on her left side and take a small part of her left lung.  They were going to do laproscopic but instead decided to do an insecion.  She now has a hole on her right side from the last tube and a nice cut on her left side from this procedure and this one has a huge drainage tube.  How does her tiny body do it.  I can tell she hurts and she looks so sad.  I can't pick her up.  She's back on morphine.  I hope that what ever is wrong is not something bad but something workable.  The worse it is the longer we wait to get the transplant.  the baone marrow team must decide.  She need the transplant to fix her lungs but... it pre-treatment could really damage her lungfs if they aren't careful.  We should have results with in a few day on most stuff.  Fungal infections which would be bad can take up to 7-10 day to grow and then 4-6 weeks to treat.  Im letting Lilly go home.  I will miss my kids beyond belief.  The are really having a hard time.  I hope they make it.  I love them.  I will let you know what I know when I know it.  On a side note...I am not going to spell check this blog this time sorry if it's hard to read.
ronda and lucy and soon ezra

One step forward and 224 back.  Have you ever had a day when you go outside and look up and it's just beautiful.  The sun is shinning and everything is great.  Then as you are admiring it all a big fat bird poops in your eye?  OK then.  that was yesyerday.  Everything was going to perfect.  All of the steps were going to good to be true.  Only a few days left till transplant.  Conditioning was starting.  Chemo, well heavy chemo, was to start today.  Radiation was next.  Things were all set.  We had all of our ducks in a row.  Then a big bad duck hunter sent in the big dogs and our ducks were scattered.  No transplant.  "Not for now anyway.  Don't get me wrong.  I would rather send Lucy into this as healthy as possible but this stinks.  Lucy's lung have been a persistant problem.  With what we didn't know.  Could be pnemonia could be damage from the ossilator, ventilator, cmv, who knows what.  When they placed the Hickman Line in they did a CT scan they found her lungs were worse.  Theyndon't know why.  Surgery will be next week for a lung biopsy.  Until then..... We WAIT.  Things when your waiting are hard.  the new baby is due in 3 weeks.  August is shaping up to be an unforgetable month.  Lucy is becoming a toddler and is getting hard to keep happy right now she thinks I am boring.  Iam.  Thank you for your comments the keep me intouch with other humans.

Well for starters Lucy is now CMV negative, YEAH!  She is doing so great.  Starting tomorrow things should start getting serious.  In a good way.  She will be getting a Hickman central line placed.  It is a line that goes from her neck to her heart with a port in the center of her chest.  This is a much safer line and one she will have for probably a year or more.  It is much safer because it is protected  by tunneling under the skin in her chest before it goes into a vein.  She can get lab draws and receive her meds.  Much better than the one in her arm which has moved and is getting very difficult to deal with.  Then she has all kinds of appointnments and procedures and such up until the day before (13th) which she will rest up for the big day.  Lilly gets to start being busy on the 13th and should be through on the 15th because she is one tough kid.  Its funny because way back when after Eden and all of the kids were tested I had hoped it would be Eden or I.  But the minute he said they had a match I said I know who it is.  I said its Lilly isn't it.  I just knew it was her.  Things were ment to be and Lilly and Lucy were ment to be forever matched.  Gosh In love my family.  I am excited and scared all at once.  Thanks for your comments and your prayers.  Keep them comming. 

  T-minus 14 days or 13 if you don't count today.  TRANSPLANT DAY is August 14th.  We can't wait!!!!!
Before anythng else is said I would like to Thank ARCTIC GYMNASTICS CENTER for the wonderful spaghetti dinner fund raiser that was on July 30th.  I was able to watch via web cam and was in awe to say the least.  The word thank you does not even come close to what I feel.  The word to best describe would be .....Family.  It felt like one big family event that my whole family (all of you) were able to attend.  These are the things that happen in a persons life that sustain us.   Nichole and Dan, Nikki, Danielle, Melinda and the whole Arctic Crew are wonderful people.  Everyone that attended is apart of my family.  Thank you!  Lucy thanks you.
  Lucy is doing good she is still working through lung stuff and wont eat but I guess that will take time.  Everything else is on schedule.  She is still in Food and Speech therapy and Physical therapy and doing good at both I just need to remember that in time she will be the same as everyother little girl her age.  The next through week will be big one to prepare her body for Lilly bone marrow.  Chemo and radiation are never text book so I hope she breezes through.  One one her nurses even said that not everyone loses their hair.  But even if she does that is the least of our worries plus, she so dang cute with or without hair.  Keep up the prayers and my family is fasting on this Sunday for the transplant to go well so everyone is invited to join.  Lucy is an angel.
 

Well....I started to write yesterday because the day before was Lucy's conference.  A conference is just a meeting that basically is the beginning of the transplant process.  A lot of paper work and a lot of talk from the doctors about how you can die.  I guess thats just how they cover their butts.  Anyway...the doctor told me that the SCCA (Seattle Caner Care Alliance) had a room on their floor for me and that I was going to move tonight.  For some reason I didn't tollerate the move so well..Lucy was fine.  If I would have written yesterday it would have started like this....I Hate everything!  I can no longer do this!  I QUIT!!!!!   Im not a big cryer but for some reason Everything was more than I could handle.  Sorry I need to remember that this is about Lucy and she is only as strong as I am and I certainly don't write on this blog for you to hear me fall apart.  Today is better.  Lucy is in a waiting pattern to start her pre-conditioning week and im trying to keep her healthy so that nothing is pushed back.  Lucy's cough is starting to break up so she pukes a lot and you can tell it hurts.  She still is feed only from her feeding tube and that doesn't help her tummy but she still seems to mamage a smile at everyone who passes our window.  thank you for all of your prayers.  Lucy needs them.  Heck, I need them.  I hope everyone enjoys the spaghetti dinner tonight I wish we were there!

It seems as though writing down what is happening and how I feel is incredibily hard.  It makes me think about it much more than I like to.  Sometimes I feel like if I just sit here and let this day pass and don't talk to anyone and don't think about anything it's one day I don't count.  One day closer to home.  Not a real day.  It's very hard to write down feelings and such because then you have to think about them.  that is not always easy.  Lucy is much stronger than I am.  She makes me look like a whimp.  Anyway....her altrasound looked good.  Her spleen had much fewer abbsess than last time and so that is a possitive.  Her lungs are still not right.  She was having trouble breathing last night and that is not good.  She most likely has damage that just needs to heal.  Because every viral study that they do on her comes back negative they don't want to change her meds.  Plus with all of the meds she is getting it would really be a surprise for her to come up with something new.  But, with Lucy nothing surprises her doctors.  They still can not tell us what form of the illness she has they are are baffled.  She is a researchers nightmare.  Transplant date was moved a little because of O.R. scheduling.  But because I am due to give birth to our new little guy at the end of August they may be able to move things a bit.  They say that this little guy has a 25% chance to hav SCID but I feel like he will be ok. 
Lilly and Sharlee are staying with Randy in Olympia until Lilly needs to be here.  She dosen't want to come to the hospital because she is affraid.  I don't blame her.  It is scarry.  She is a tough girl.  I miss my family.  Gabe and mackenzie get to be here for the transplant and I am so exciteds to see them.  I haven't seen gabe for months.  I miss being at home and being normal. 
Lucy has her transplant conference tommorow and then her pre-conditioning starts.  She has one week of that and then one week of transplant conditioning.  They don't need to kill of much in her because she dosen't have much so I hope it is easy on her body.
Thank you all so much for your prayers.  It is nice to know so many care about us.  I enjoy your comments and everything that is being done for our family.