ANC......................0

Yes. Her little body is just not recovering from the MiBG treatment. Dr. Yeager has been out of town all week but I would imagine that on Monday when we go back to Clinic he will be prepared to give her a stem cell boost. We are sad but must move forward and not let this get us down. Now that we know she will not be going to Philly for more treatment, we will sit down with Dr. Yeager and Dr. Mosse and figure out what is next. They will give us suggestions as there are many treatment options out there but ultimately it is up to us. I know these treatments like the back of my hand and still i am so afraid of making the wrong choice. As i have said before i think our best option is 3F8 Antibodies in NY and go from there. The big down side to this is we will have to spend a lot of time in NY which will effect the time we get with our family, School, work. Also, this treatment is very painful! Imagine having someone reach into your body and just start touching all of your nerve endings. The pain only lasts while she is getting the Antibodies which i believe is a few hours a day but it is very intense pain. She wouldn't be admitted during her stay, it would be done as outpatient and they would give her tons of pain meds. I am probably getting a little ahead of myself but needed to say the words (or type them) so i can figure this all out in my head.

She had to have platelets today because they were only 13 and she is still having a lot of pain and wont walk hardly at all. I see improvement everyday but its slow going.

My very sweet friend Kelly wrote this poem for Eden that i just loved. Kelly and Eden have a very special friendship and Eden just loves her to death.

E D E N
(by Kelly Hampton)

Eden
with her eyes so bright
there’s something special
is it a light
that comes from within
is it her smile
you feel it again and again

Eden
so young and wise
is she an angel sent from heaven
who touches our lives
and makes us glad
that God made little girls

Eden
from the beginning
laughing and healing us
with her love and compassion
always brave, strong
and worried about others

Eden
the sound of her giggles
the warmth of her hand
the feel of her arms around you
hugging all your cares away

Home at last

Eden was released yesterday and we are so happy to be home! She is still having a lot of pain in the private area as it heals but we are managing. One thing that helps the most is soaking in the bath which is challenging as her port is still accessed. She will have to stay accessed for the next few weeks to receive IV antibiotics at home 4 times a day. Yesterday her ANC was up just a tiny bit but its the first time it has gone in the right direction in weeks so we will just keep our fingers crossed. It was 6 on Tuesday and 14 on Wed it must reach 200 by Monday to prevent her from getting a Stem Cell Rescue. Rourke and I have somewhat made our peace with the fact that her ANC may not hit the magic number which would mean we will be looking for her next treatment option. Although we try to keep the faith we must always keep our eye on the ball and know what our next move is. We have a lot of options at this point and nothing is being ruled out. My hopes would be going to New York for 3F8 antibodies but we have two very good oncologists in our corner (Dr. Yeager and Dr. Mosse) who will lead us down the right path.

Eden received so many cards at the hospital that each and every day i was overwhelmed by the love. We truly enjoyed each every one of them and i must say AGAIN how blessed we are to be surrounded by so many amazing people! I need to mention one of the senders as i know what a sacrifice it must be to continue to check on Eden and take the time to send her cards. Tina Cerino, angel Jarets mom and his Grandmother. I am sure it must be challenging to continue to check up on Eden considering her great loss. Jaret was just the bravest little man and we miss him so. It seems like over the last year we have lost so many great warriors: Allie Neff, Ian the Great, Jaret and just last week Christi and Shawn. With all the things we are able to do in this day, how is it we weren't able to save these children's lives?

The very sweet Julia Sanders created a wonderful video on her website of Eden if you would like to check it out. She did such a great job. Thank you Julia!

http://www.youtube.com/watch?v=Tf2Hb210fNY


Lisa

Visiting with her Royal Subjects

Here are some pix from Miss Diddle and Mrs. Zorn's visit on Sunday night! As always, it was great to visit with the Princess! However, I think it is suspect that she won the game of Guess Who EVERY time we played.....hmmmmm.....

We sure miss our princess at school and can't wait to have her back with us!

Still hanging out on J5

We are still here! Things got a little worse over the weekend with her infection but she is on the mend now, thanks in part to all the wonderful cards she received. 35 and counting and she makes everyone who comes in read them to her..... All the nurses make such a big fuss about how many people love Princess Eden. It one of the only things i have seen make her smile over the weekend. Thank you all so much!

We will probably be here for a few more days as her fevers are much better but still not normal and her blood cultures are still growing bacteria. We continue to pray that the antibiotics kick in soon and wipe this infection out so her white count can start to recover. We are running out of time.

Miss. Diddle and Mrs. Zorn made a surprise visit yesterday that just made Eden's day, it was the only time she sat up all day. They painted and played a few games of Guess Who and fun was had by all. I am sure Miss Diddle with post some pictures sometime today.

Thank you for all the wonderful support!

Lisa

Eden has lost another friend

I just found out that Eden's pal, Shawn Reynolds, gained his Angel wings sometime early this morning.

Eden and I have spent many a happy clinic day playing with Shawn and visiting with his parents, Paul and Tracey. Shawn has a couple of great siblings, too: Billy and Shelby. Boy, the races these kids used to have through the hallways during inpatient stay was just amazing. I don't know what was funnier, watching them act like hooligans or watching us try to keep up with them and their IV trees.

The Reynolds' are the sweetest, nicest people. I have taken support from and given support to them throughout this lousy ordeal. We've stood in the halls of J5 crying over relapses, terrifying trials to choose from and always known that the love and support was unconditional.

Please keep them in your prayers.

Fly, Shawnie, Fly! You will always own a piece of my heart.

Rough Patch

Eden is of course still in the Hospital and according to Dr. Ben, Monday would be the earliest she would be released. As of last night she is still fighting the fever which has been hovering anywhere between 100 and 103. They have a cooling blanket on her bed to try and control the fever so she doesn't get to uncomfortable. It is basically a large machine beside her bed attached to a blanket of sorts that she lays on and pumps out cooler air based on the temp they set the machine to. They have more less pin pointed the infection and are now using more specific drugs to kill it. She still has the very nasty yeast infection from the antibiotics which is causing her the most pain but they are giving her oral Morphine to help with the pain.

I had a conversation with Dr. Nick yesterday and the Report from her MiBG is finally in and confirms for the most part what we already knew. The spot on her shoulder is completely gone and there is nothing on her hip (bone scan indicated there may be a new spot) and the spots in her abdomen is much improved. THANK YOU so much to all of you who have been praying for her! It truly does make a difference. I need to ask for one more prayer that Eden's counts start to recover so she wont need a Stem Cell Rescue. We have been granted an extra week to try and improve them however there is little we can physically do other then continue to give her the shots.

Sweet Christi's funeral is this morning at 10 am and it was my intention to go bid farewell to the warrior princess however with Eden in the hospital and Riley to care for i am afraid it will not be possible. It is not natural for a child to be buried ever and i am sure Shane and Angela must be living in a never ending hell that few people can understand and i wish i could be there to show my support. I am sure the line of supporters have been endless over the last few days and she will have the send off of royalty but it is my wish she could still be here living the life of a normal child that she was so unfairly cheated out of. Christi's pain is gone but her family will probably live with it the rest of their lives. Goodbye sweet Christi Thomas, your smile will forever be embedded into my heart!

In the Hospital

The little princess woke up around 3 this morning just grumbling and when i felt her head i knew why.. She was HOT. i took her temp and it was 100.8 so i decided to not give her anything for it and just keep an eye on it. (technically anything over 100.5 earns her a hospital stay but i refuse to take her to the ER unless it is life or death. (as far as i am concerned its about the same as throwing her in a vat of germs) So i set my alarm for every 45 min and checked her temp. It continued to rise but very slowly so as long as it stayed under 103 i was going to hold off until morning. When i woke her up at 9 this morning it was in fact 103.6 so off we went to the hospital. Even worse then the fever was she was hurting on her "PeePee". We are pretty sure its some sort of urinary tract infection from the Antibiotics and low White count. So she could barely walk and wouldn't let me hold her so it was rough going but at last we made it and they started her on some meds to help and they got her counts. Counts are White 1.1, Red 5.9 and Platelets 11. So she is getting Red Blood and platelets and staying on the shots. I ran into Dr. Yeager and we sat down and looked at her scan from yesterday together. We agreed that the spot on her shoulder seems to be gone and there is nothing in the hip that we can see and the belly looks stable if not better. The report from the radiologist was not available yet so we will wait for him to confirm what we were seeing. The ladies down in NucMed where making fun of me calling me Dr. Lisa because i asked them to pull up her last scan so i could compare them as the current scan was running. As i am sure they would agree i have learned just enough to be dangerous. lol Anyway, during my conversation with Dr. Nick our biggest concern now is her counts. They must start to recover soon to keep her eligible for another round of MiBG in Philly. So he plans to call Dr. Mosse and ask her if we have a little wiggle room on the time frame and we now know that the MiBG did in fact help and her counts could still be low because of the cold. The problem is that continued low counts could cause any number of infections or internal bleeding which could really hurt her progress and if they wont come up on their own then we would have to rely on a Stem Cell Rescue and if we do that then she cannot do MiBG anymore and we would have to move on to something else. So we constantly walk this very fine line choosing which option is bad and which is worse.

If you would like to send Eden a card, she is on J5 Room 15 and you can use this link. http://www.columbuschildrens.com/gd/applications/controller.cfm?&page=246

Thanks for all of the prayers.

Please also continue to pray for sweet Christi's family as i am sure the next few days will be very difficult for them.

Lisa

Gods Children

I would like to share a story with you about a conversation i had last night that changed everything for me forever.

Eden and I were driving to get food and she looked and me and said Mom i remember when i was having Chemo and one night at Dad's Riley was very upset and crying because he was afraid i wouldn't make it through the chemo. I said what do you mean you wouldn't make it? She said you know mom "pass away" I said oh ok go on. She said i had to go into his room and tell him it was ok and that i was ok and he should go to sleep. Then she said something that rocked me to my core. Mom, you know i am not worried but if things get worse we might have to start to worry. I lost my breath and was unable to speak. i am barely able to keep myself from falling down the rabbit hole, what will i do if i know have to worry that she is understanding to much of what is going on?? AND this is where everything changed........... She said Mom I am not afraid to go to Heaven! And she began to tell me all the wonderful things in Heaven such as you can eat anything you want and you can drive at any age and did i know that there are cool games and the best Zoo and food there that we don't have here and best of all there are no rules! She said that when God was making her she took a sneak peek around and tried really hard to remember everything she saw so she could tell me about it when she was old enough to talk. WOW!!

For the past two years i have wondered if my purpose on this earth was to be her mother and help and support her though this difficult time. Then last night i was forced to rethink everything. Has God been preparing her for this life from day one? Did he give her images of Heaven to keep her from fearing Death? Am i really helping and supporting her through this difficult time or is she helping and supporting me thought it? Is this my purpose on earth or hers?

During this conversation i mentioned that Christi may get to go to Heaven soon and her response was : Mom, She is soooo Lucky! Mom, Do you think that Jaret and Ian have met yet? Mom, Did you know that Pet Heaven is just next door to People heaven so they can visit whenever they want?

I never want to say goodbye to my sweet girl and i will fight for her life for as long as it is in her best interest but if the day comes when i must say goodbye I now know that she will not be afraid and therefore i will not be afraid for her!

We have had to say goodbye to one of the strongest worriers we know this week and it was terribly painful to do because we will miss her so very much. It has made facing Edens current scans so much harder knowing they will tell us a story we may not want to hear.

Thank you for listening to me ramble!

Lisa

MIBG tomorrow: PRAY!

Wednesday at 2 PM Eden will have her MIBG scan. Please pray for her as she needs all the prayer that she can get.

Pray for her parents to survive another day or two of hell as they wait for results. Eden's next treatment steps are dependent on these results, so it's doubly difficult for Lisa and Rourke. Not only do they have to agonize over the results but then they will need to make decisions with clear heads. Please pray for guidence, wisdom and peace for both of them.

Toss in a prayer for Riley, too, please. He's been sick all week.

Thanks,
Shelly

Heaven's Newest Angel - Christi Thomas

Christine Shayna Thomas (“Christi”) May 12, 1997 – September 19, 2006



At 9:00 am, with Shayne and I at her side, Christi took her final breath and gently floated away forever leaving a hole in our hearts. Without a doubt, she’s already been awarded the glitteriest of God’s Angel wings, received a warm welcome from many loved ones, received her library card, and has been assigned to tend to Heaven’s pets. Additionally, I’m certain she’ll also forever watch over and protect her sister and each and every kind soul who has so lovingly touched her life, especially over the past four years. In her 9 short years here on earth, Christi did more than most will ever do in a lengthy lifetime. We were truly touched by an angel. Christi is now finally pain and cancer free - dancing on the stage in Heaven. Mommy, Daddy and little sissy Shayla will anxiously wait to be reunited with her again – in a much better place. Until those glorious days, fly, Christi, fly!! Our friends, and Christi’s Angel Flight Pilot – Rich will be flying her body back tomorrow. Rich & Andrea Traunero are handling Christi’s Celebration of Life arrangements at their funeral home in Tiffin. The Thomas team requests that memorials be made to the "Christi Thomas Memorial Fund” so that her spirit can live on.

Scans and Clinic

Yesterday started early for us. We headed to clinic at 8 to get Eden's port accessed and labs drawn and I requested they draw cultures because of the low grade fevers. After that we rushed down to Nuc/med for injection for her Bone scan and then just kinda hung out until time for the scan. She was still feeling kinda cruddy so I was worried they wouldn't want to sedate her and we would have to try and do the scan awake which is very hard on her because she must lay very still for about an hour total. They ended up feeling she sounded well enough for sedation so all was good. I am still having such a hard time with all of this so I hung out in the waiting room and daddy stayed back with her. I do know they did some extra scans on her hips moving them in different positions which terrifies me because Eden has complained a few times of hip pain. We have to go in today for her injection for the MiBG tomorrow and I have decided to run in and back out and try to avoid getting any results from yesterdays scans only because tomorrows MiBG is always the best indicator of what is going on and I need a little more time to prepare myself for whatever is to come.

Eden's counts are still very scary with Platelets at 4 and white count still 1.1 leaving her with an ANC of still around 11 or 12. She did get platelets yesterday as well as another dose of IV antibiotics and she really seems to be feeling better today.

Please keep Eden in your prayers as we wait for results for her scans this week!

I need to tell you of the very courageous thing that Christi's parents are doing. They have decided to allow the Great Dr. Maris to try to get a Cell line from Christi. If he can get the Cell line to grow in the lab it will be used for research. They have only been able to get them to grow 1 in 20 times they try but Christi defied every odd for so many years that it is my hope they will be able to make it work. I am sure it is very hard for them to allow this one last violation on her poor body but i am also sure this was not a hard decision to make. They want to see the monster that took their baby destroyed and they want to help other children like christi fight this horrible disease. Christi will die the way she lived, Never giving up on this fight! Christi will forever be in my heart and i will never forget her sweet smile or her cute songs or funny jokes. She embedded herself into my soul in the short time we spent together and i have cried immeasurable amounts of tears for her parents loss. They believe she is gone but her body is still unwilling to give up.

Please God if it is your will to take her then do so swiftly and let her family start the celebration of her new life in heaven with you.

Please God

Dont let sweet Christi suffer anymore!

Posting from early this morning:



We've had three times tonight when we thought "this is it". All three have brought us to rivers of tears, all three have found us calmly talking with Christi telling her how much we love her, telling her how wonderful the place she is going will be, telling her she'll always be in our hearts and that we'll be okay with our her and telling her that she's the first in our family to get to meet Jesus. (Christi always likes being "first".) As of this moment, she's still here and I'm typing from her bed where I've been perched most of the day trying to soak in every last sight, smell, and sound of this little girl who, as a result of spending so much intense time together over the past four years, is like a part of Shayne and I. When she soon dies, a huge part of us will also die.
Shayla broke our hearts tonight when she wanted Christi to tell her her username and password to get on to her computer site back home. Christi's so heavily sedated that she has been unresponsive since early this morning when she said, "bathroom" yet couldn't even hold her head up and could only cry in pain and tell us, "I hurt everywhere." Watching her suffer like this is horribly cruel. While a very selfish part of me wants her to stay like this for days, I continue to pray to God to please not let her experience any more pain and please call her Home soon.
The funeral plans are begining to mesh. I just feel that this little Princess is quite deserving of a royal send off! And quite frankly, since there will be no graduation party, wedding or baby shower to help plan - this is it! (Thanks, Kelly, for taking care of the dove release which will be held at the cemetary. Only YOU can know and understand the pain of watching your precious baby's body being destroyed with this evil cancer monster.)
I do not know if she will make it through the night, but I'm going to put my head back and try to catch a few zzzzzzs - if I can.

We also ask for prayer for Eden today as she starts her scans!

The Weekend

Eden had an ok weekend. She is still fighting this cold and has had some low grade fevers that I am hoping is just from being extremely neutropenic. She has complained of some pain here and there which I am assuming is from the G-CSF (shots to help improve her White count) Sometimes I have to just assume things to keep from having panic attacks! I know some people would call it living in denial but I have to say that denial has become one of my favorite places. They have comfortable chairs and pretty pictures on the walls.

Having all of these little issues with Eden along with all that the Thomas family are going through with poor sweet Christi, I am having a very hard time keeping it together with Eden's scans coming up this week! I have always started to feel the pangs of worry about two weeks before her scans and then a week before the pangs turn into Nauseating sharp pains and then the day of it takes everything I have not to jump right out of my skin.

Its as though someone has sat your child in the middle of a busy street and tied you to a tree to watch what happens. The cars continue to fly by each one getting closer and closer and everything in your body screams for you to do something and you are completely helpless. When you look into her eyes, you see no fear because she knows you are there and you would never let anything hurt her. You cant scream out to her and you cant show fear to her. You just watch and pray that the next car wont be the one that takes her away from you forever!

Please continue to pray for sweet Christi and her family!
http://christithomas.blogspot.com/

School Update

Princess Eden Adams

Hello! I am Mrs. Russell. Eden's first grade teacher. I was so excited to have Eden back on Thursday. She hugged me for the first ten minutes of the day! Eden your the best! The children in the class get just as excited as I do when Eden is at school! A girl in my classroom has been waiting for Eden to come back to school so that she could give her a best friend necklace. Eden's friends in her classroom are all so sweet. Here are some cute quotes from the students- "It just isn't the same here at school without Eden", said a girl on a day that Eden was not at school. Another child said to me, "I can't wait till Eden sees this" -I was having the children cheer their word wall words with pom poms. Now that I have figured out how to work Eden's blog I will update on how she is doing in school! Eden is always in my thoughts and prayers. Check out the pics of Eden and her friends at school.

Clinic

Daddy and Eden headed to clinic yesterday. Eden is defiantly feeling better but her counts are still down. Platelets were 21 which should have meant no transfusion but she had a nose bleed yesterday and being Thursday Nick felt it best to fill her up for the weekend. Our biggest concern was her white count which effects her ANC, Current ANC of a very sad 11, safe numbers would be anything over 1000. If it stays below 200 for 2 weeks she will have to have a Stem Cell Rescue which will disqualify her for another round of MiBG. Please pray for her White count to improve. She had a great time at school yesterday as she hadn't been all week and one of her little girl friends gave her half of a Best Friend heart Necklace which was so cute and very funny as she has the same necklace here to give to her friend. I just cant explain to you how amazing it is how these children never see her bald little head or her hearing aids, they see her! What wonderful parents they must come from. There are many adults who cant see past these things. I can never stop saying how lucky we are to have such wonderful people in our lives. My wonderful employer who has always put my need to care for Eden ahead of all else. They allow me to work from home whenever needed or shift my hours to accommodate her medical schedule. I can honestly say I don't know what we would do if this wasn't possible.

Thanks for listening to me ramble! Eden is holding her own and doing fine.

A parents prayer

Lord,

Today I pray for my comrades in arms in battle side by side to defeat the monster that has come to take our children. Our babies go through living hell while we are on our knees begging you to spare them. I pray someday I will understand this madness, but for now I am so very sad and so very angry! Dear lord please hear my prayer to take Sweet Christi swiftly and painlessly and to give her parents and sister the strength to withstand the Immeasurable about of pain they are enduring. I pray she will stay in the hearts and minds of her friends and family forever so she may always live on through them. I pray for her soul and that she suffer no more.


Please pray for peace and comfort for Christi and her family.



Latest update from Christi Thomas website:

Christi continued to be very uncomfortable throughout the night. She received a platelet transfusion about 6 AM and that’s when we learned her LDH was even higher (17,288). After assisting with Christi’s clumsy body and getting her back to bed after using the restroom I pointed out to Shayne and the nurses that her eyes looked exactly as they did before she had her seizures Friday night and her motions and behavior were the same too. Sure enough, she seized. I’m so sorry Shayne had to witness that as it is a horrid and helpless feeling to watch your child shake uncontrollably right before your very eyes.

The LDH and the seizure led Shayne and I to the conclusion to ditch the radiation (torture) scheduled for today and to let her die with dignity. Dr. Maris was in this morning to again patiently talk with us about end of life issues and to remind us that no parent could live through a greater hell. He believes it will be sooner rather than later.

Shayne and I continue to cry oceans of tears. I never expected it to hurt this bad – and yet I have learned that the real pain hits 4-6 months after the child’s death when others expect you to go on with your life even though life will never be the same. I just love and adore this sweetheart who because of the circumstances became my best friend since we spent so much time together. As I sit here beside her bed, I look at her painted fingernails and remember just weeks ago when we sat on the floor painting each other's nails.

We will forever be grateful to all who have helped us over the past four years. We are truly unworthy. We consider ourselves richly blessed. Our prayer request is for Christi’s precious little soul and that this little child of God has a peaceful transition to Heaven.

Feeling Better

Eden is feeling better today but i still kept her home to be on the safe side. She took a 3 hour nap yesterday which tells me her body is still working overtime to heal . Mrs. Russell called to check on Eden yesterday which is just so sweet and she told me that the kids are missing Eden and asking about her. She is so lucky to be surrounded by such amaizing people. Eden Misses you all very much and cant wait to come back! My hope is she will go back tomorrow because it will only be a half day for her with clinic in the afternoon. Thanks Nurse Mary for calling to check on her! I am hoping her counts will be coming up by tomorrow but who knows.. I have given up on trying to predict what they will do. Yesterday while giving her the shot that helps to bring her white count up we had a little mishap. the plastic cap that attaches the needle to the syrange was defective and while i was pushing the meds they came apart and sprayed Neupogen all over both of us.. i was afraid to give her another shot because i dont know how much of it she got. oh well.....

I wanted to share something i found on another website. It is very insitful:

The Strength of an Egg by Juliet Freitag.
Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength "like a rock." Albiet flattering,it isn't quite true. It is more like the strength of an egg. An egg, you ask? Yes! If you'll think about it, you'll see my point. An egg has a polished, smooth outer appearance, with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be so smooth or solid. Most children, at some point are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet the same egg, tapped gently at an ever slightly different angle, will break. The contents, once so neatly concealed, will come spilling out. The no longer perfect shell will be crushed. It looks so fragile that it seems inconceivable that it ever held any strength. A rock, on the other hand, is solid all the way through. To break it is almost impossible. If you succeed, you will find that there is nothing inside but more rock. It takes a lot more than pure hardness to hold the hand of hope. Parents of [medically fragile] children are not solid all the way through. We hurt, we fear, we cry, we hope. It takes a very careful balancing act to keep the shell from being shattered. "Balancing an egg" while running a household, going for doctors' visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed! Occasionally, the angle will be off and the shell will break, shattering hope and all the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty, though, parents of [medically fragile] kids will pick themselves up and put themselves back together again.

Rough Day

Eden felt kinda cruddy all day and so at 2 we headed to clinic for labs. We get there and the place is empty so I thought we would get done fast.. Boy was I wrong. First it took them 45 min just to get her in for height and weight and another 20 to draw labs. Turns out She wasn't on the schedule...Ugh. So finally labs are drawn and I find out there isn't a Dr. To see her. So I insist they find someone as Eden is not feeling well and needs to be seen. So we wait and wait and wait a little more and finally we are told that Dr. Riamon can see her. Very sweet older Dr but brings back very difficult memories for me as he is the one who walked us to that little room some two years ago and shattered our world with Cancer! I know its a little like shooting the messenger but what can say. Anyway, he is an excellent Dr and started looking over Eden very close and said the little purple dots on her skin indicated her platelets were probably very low. I was a bit surprised.. Not as surprised as I was when they turned out to be only 4!!! So, platelets were ordered and he was concerned about something he was hearing in her chest so he sent us for a chest Xray and he felt she needed antibiotics so they did a large dose by IV and sent her home on some as well. Her ANC was down to 100 so she also now needs to start shots.. Shewww that was a lot to deal with in one visit. But we have our plan and we are on top of it so all will be fine. Dr. Nick stopped by to take a quick look at her while we were waiting for Platelets and said that more then likely her cold she has picked up was stalling her bone marrow and once she is over it things should start to improve. he looked at her xray and said things looked ok. Daddy showed up with Riley and so Riley and I headed home and Daddy and Eden stayed for platelets. Things started out a little rougher then I like but all in all we have a wonderful medical team supporting us and together we have things under control.

Thanks for checking in!

What a Weekend

Friday after School and work we all headed in different directions for a fun filled weekend. Eden and Daddy headed for the houseboat for the Poker Run with Mamma Hope and it sounds like they had a wonderful time. Seems Eden wasn't feeling the greatest on Sat due to a cold so she and daddy just kinda hung out but by last night they were able to get some fun time in on the boat and she even got to ride a mohma???? She was explaining this to me on the phone and for the life of me I could not figure out what that was until dad intervened to explain it was a Yamaha. She is so stinking funny! Anyway they are on their way back now and had a Fab time with the whole houseboat crew. Riley and I headed to cedar Point with CeCe and Justin for some wonderful Riley time. (thanks to CeCe) We spent the whole weekend there in a hotel attached to the park. It was so much fun and relaxing. The park wasn't crowded at all and we didn't wait in any lines. But I am not so sure that is a good thing. Justin talked me into getting on something called the SkyHawk Friday because there was NO line for it!!! This ride is unreal and about gave me a heart attack and I LOVE Roller coasters. This was no roller coaster though. It was this huge pengalum looking thing with seats on each side that swings back and forth and I have never been on anything more terrifying. Anyway it was great getting to spend so much time with my baby boy!

Please keep praying for Sweet Christi. It took some time to get through the updates from the last few days thru the tears. They are having such a hard time and life can be so unfair.

Platelets up!

Thought I would share that Eden's platelets are going up which we are so thankful for. Yesterday they were 22 and are now 28. Her Hemoglobin is also on the rise, however she is still getting a fill up on Red Blood. We have been very worried as low platelets not only cause horrible bruises all over her cute little body but internal bleeding is a very real possibility which obviously could be life threatening and we have come to far to go out like that!

Thanks for your prayers!

Thursday Clinic

We went to Clinic yesterday and held our breath while waiting for counts to come back. We were told by Dr. Mosse on Tuesday that unless Eden's Platelets are at 10 or below we will not be transfusing. That is Very Very low. Normally they transfuse anything around 20 and Normal would be 150. (that is all in thousands) I was so afraid they would come in at 12 and we would spend the next 3 days in panic mode every time she moved. They came in at 22 which still isn't good but could be worse. Her Hemoglobin was down to 7.4 so she has to go back today for a Red Blood transfusion and her white count dropped a little but not much. We started counting bruises last night and gave up at 26. When she is being rotten and I threaten to beat her she reminds me that her platelets are low and that would not be a good idea as she stands there with her little hip cocked to the side and her hands on her hips. What a little brat! I have no idea who made her that way....LOL Other then watching her counts she is feeling great and loving life. BTW: Miss. Diddle, Mrs. Russell and Mrs. Zorn, Eden was very upset with me when she woke up this morning to find she couldn't come to school today. She said she misses you all!

Oh No... Have to run, I see Eden out the Window getting on her bike.....YIKES!

Have a great weekend.

Christi Thomas

I don't even know where to begin. Please pray for Christi and her family. The post from last night was so disturbing that I could only read it in pieces. I am unable to stop the tears every time I think about how she is suffering and how her sweet family have no other choice but to sit there and watch it happen. I honestly thought I would be sick when I read "I, for the very first time, asked God to "please take her now" Until you are faced with the real possibility of losing your child you don't know the strength and courage it takes to let them go when the time comes. I fall asleep every night concentrating all of my efforts on giving them strength to face the next day and I wish there was more I could do. Please pray for reduced pain and peace for Christi and for strength and peace for Angela, Shayne and Shayla. May God be with them! http://christithomas.blogspot.com/

UPDATE: They have stopped Christi's Chemo and are working on a plan to take her home. I HATE this desiese with every bone in my body and would give anything to rid this world of it. I wish for just one second i could understand why these sweet sweet children must suffer this way.

Doing Fine

Eden is doing fine this morning. Her port site bleeding last night was cause for concern but not really dangerous as it was a very slow leak and I was in constant contact with the wonderful on-call doctor at children's. We fully expected her platelets to drop around now due to the MiBG therapy and her ANC has started to drop some as well but we will be watching this closely and Dr. Mosse sent an email last night responding to an email from Dr. Yeager giving her an update on Edens health and overall condition. She seems very comfortable with Eden's Status and we will just continue to watch her closely, give her platelets (and rap her in Bubble Rap) until her counts start to recover. She also said that if we see positive results on her scan in a few weeks we will be scheduling her for another round of MiBG therapy despite her Platelet counts and plan a Stem Cell Rescue for two weeks post MiBG # 2.

I realize that sometimes the treatments and side effects seem worse then the Disease but it is so very important that we continue to treat her aggressively and never give the Disease a chance to round up its army and attack. The life that Eden lives is the only life she knows so there is little self pity or wishes of normal. To her this is normal. She has great friends and tons of family surrounding her and she loves her life.

Thanks for checking in and I am still working on sizing Kings Island pic to put up.

Lisa

Super low platelets today

The MIBG has done what CHOP said it would: Eden’s platelets have reached the dangerously low point. Her platelets were 10 today, down from 24 last Thursday. Dr. Nick told Lisa that Eden was NOT allowed to go to school tomorrow. Who knows how long it will be before she can get there again.

 

She had a transfusion today, but as of about 9:15 PM was still “seeping” (bleeding) from her port where she was accessed earlier. Lisa has been in contact with the on-call fellow from J5 and has instructions of what to do to get it to stop and if that doesn’t work then they’ll head to Children’s for another platelet transfusion.

 

Please pray for Eden; she REALLY needs all of the prayer that we can send up for her to get through the side effects of the MIBG treatment. Please keep Christi Thomas and her family high on your prayer lists too. They’re having a very difficult time.

 

 

Kings Island

Eden just returned safe and sound from Kings Island. She had the best time! Uncle Bill said Eden and Mick got bored with the kiddie rides and hit the big rides soon after getting there. Eden said she loved everyone of them and never got scared. She is so brave and of course what could possibly be more scary then some of the things she has been put through in the last two years...... She rode the octopus and the Viking ship and the fairly odd coaster and many many more.. (I was having a hard time understanding her with her mouth full of chicken nuggets.) They have a build a bear in Kings Island now and so Mick and Eden had to visit... Mick built a bear and Eden built a bunny. FYI: Her potty issues seem to be all better now.

We cant thank Aunt Pam and Uncle Bill enough for taking her. We are so blessed to be surrounded by such amazing people.

Poor Poor Riley had to spend the day with me and CeCe shopping for school clothes as we discovered this week that all of his jeans are to short. We had already bought Eden new clothes weeks ago because it was obvious she had grown tons over the summer. (when I say we bought I guess I should say CeCe bought. She is sooooo good to us!)

Normally Eden would have clinic today but because it was a holiday I will have to call tomorrow and find out when they want to see her. I am sure there is a protocol they need to follow for the MiBG therapy she just did so I would guess they will need to get her in twice this week.

Uncle Bill promised to get me some pictures from today soon and I will get them up as soon as I have them..

Thank you all for your prayers for Christi! They seem to be managing her pain a little better today which we are so happy to hear.

Hope you all had a wonderful holiday

Picture from the 1st week of School

Eden is doing fine. Sat started with some constipation that grew worse throughout the day despite the meds I could give her. She was in the bathroom every 20 minutes trying with all her might and crying in pain and then finally last night the meds gave her some relief and she felt better.. Unfortunately we have now gone from one extreme to the other and had to cancel on papa Jim to go to the family reunion because it was about an hour drive and at a park where bathrooms are few and far between. So we have sent Riley to represent us... lol (oh what they will think of us by the end of the day) We consider ourselves very lucky that Potty issues are all we have to deal with right now as we read sweet Christi's website and can literally see things getting worse as the words stream across my computer screen. Christi has been pulled from the depths many times over the last 4 years by the amazing Dr. Maris (he is one of the leading most experts in Neuroblastoma and partners with Dr. Mosse, Edens Dr in Philly) but I am fearful that he has no more tricks up his sleeve for christi. Her pain has become so intense that it seems they are upping her meds by the hour now. They are hoping to start Radiation which should give her some relief (we pray) . Below is the latest update which is truly heartbreaking:

Dangerous and life threatening is how Dr. Maris just summed up the new tumor which is growing down out of Christi's skull and is now pushing her brain to the side and causing this horrendous pain. It is quite large. Looking at it myself on the CT, I just couldn't believe how big it is. It's on the top right side of her skull pushing down. There is quite a bit of swelling which is also contributing to this unbelievable pain. I thought I could somehow manage my composure, but it was just too much. I nearly passed out and I had to crouch down in the hallway to try to get the pins and needles feeling, lighteheadedness and nauseous feeling out of my body. I'm still shaking in disbelief. This is heartbreaking.In addition to the calcium and phosporus bolus she is getting she'll also begin on a steroid (decadron) immediately to try to reduce the swelling and pressure in her brain. Since seizures are likely, she'll begin an anti-seizure medicine too. Although perhaps I shouldn't share, Shayne and I took Dr. Maris's recommendation and agreed not to bring her back if it's her time to go Home. We should be meeting with the radiation oncologist shortly and she should be on the table getting her first of (probably) five days of radiation with the goal being pain relief. I ask that you pray for pain relief for Christi, for peace for her soul and for strength for Shayne and I who are not holding up very well at all. Thank you.

As I have said many times we try very hard to live in the day and not dwell on the future as I would then be forced to acknowledge the fact that Chrisi's current situation could also be Edens fate and I could not function if I had to think about that every day. My heart aches for Christi right now for the life she has yet to live and may never have the opportunity to and for her parents who feels as though their insides are being ripped out with a grappling hook. Please pray for Peace and healing for Christi and her family!

To end on a good note.. Eden is going to Kings Island with Uncle Bill and Aunt Pam and Mick tomorrow and I know she will have the best time.. Thanks guys for inviting her! We haven't told her yet as I wanted it to be a surprise and I need to make sure her potty issues are under control before then..

Thanks for checking on our girl...

Lisa