stoney wrote:

Just wave the flag like this Fred......It's ok we know it's white and you would rather wave a Rainbow colored flag. Now you can return to your cindy Lauper 8 track

Hey... Cyndi Lauper rocks!

Stoney's back on the crack pipe again.

Someone who shall remain nameless had hair a LOT like Cyndi Lauper back in the day.

fred isn't all bad.

Cherrypicker wrote:

Stoney's back on the crack pipe again. Someone who shall remain nameless had hair a LOT like Cyndi Lauper back in the day. fred isn't all bad.

** diggin for evidence at my brothers house i will **

muuuuuuuuwwwwwwwahhhhhhhhhahhhhhhhhhhhh

gametime wrote:

** diggin for evidence at my brothers house i will ** muuuuuuuuwwwwwwwahhhhhhhhhahhhhhhhhhhhh

Ah shit, I forgot about that...

Cherrypicker wrote:

Stoney's back on the crack pipe again. Someone who shall remain nameless had hair a LOT like Cyndi Lauper back in the day. fred isn't all bad.

why want to say I'm on the crack pipe?? and I agree she puts on a good concert!

Cp a cyndi Lauper look alike back in the day???? hmmmm lol

where's that pic GT of a bad hair day!

wasnt a bad hair day stoney..... its how she "rocked" it back in the day.

we know how she ROCKED IT!! lol

***UPDATE***

I know many of you were wondering how today went. Well we had nothing but good news!!!! The doctor went in and checked her bone marrow and it was clear... no Leukemia so that means they can still proceed with the transplant. They also ended up putting a double lumen central line in.- Basically two central lines in one. They put it in on the right side of her chest. She tolerated surgery very well. She just woke up about 3 hours ago. At first she was very hoarse b/c of the tube they had down her throat while she was under anesthesia. But is now smiling, laughing, and drinking juice. They are going to allow her to be off of IV fluids for awhile tomorrow. This way she can walk around a bit before next week when she gets hit with the radiation and drugs. I can't tell you how relieved I am to know that the Leukemia has not returned and that the transplant is still gonna happen. THANK YOU! THANK YOU! THANK YOU! To all of you for the prayers, love, support, and just caring about Maria and our family. Just know that I can speak for Peter and Maria when I say "Thank you from the bottom of our hearts". You all have done more for us than you will ever know. God Bless.



With Gratitude,

Trish and Family

P.S. Thank you to Kristen for getting this Garage Sale together for Maria and to Blazergranny for the donation.-You're WAY to kind. XOXO!

stoney wrote:

where's that pic GT of a bad hair day!

how about a g/r hair photo contest. here, i'll start.

Dammit jc, warn a sister next time. Diet dr pepper burns the nostrils.

Now let me see what I can dig up later tonight......(we made need to start a new thread though, just to keep the focus where it should be on this one)

Also, mine will be a pic from many YEARS ago, not just last week like YOURS!

Cherrypicker wrote:

Also, mine will be a pic from many YEARS ago, not just last week like YOURS!

i wish i could look that cool these days.

HELL JC we know you look way cooler than that now!!

Dharma said something about you having a stache like sauter but you use it has a combover across the top lol






(kidding)??

**Update from Trish last night (6/12)**

Hey everybody,



Well this week is almost here and gone. Maria just finished her last radiation treatment this afternoon. She has done very well with them. She had radiation a total of 8 times. For the past two days she has been so hyper! I think some of what she got. lol Tomorrow she will have a chemo drug called cytoxin. It is going to be a very high dose. She has had a high dose of this med before but not as high. She has had 120 mg. of this drug before and for 2 days will be receiving 600mg of this chemo. It has me worried. The doctor doesn't seem to think that there will be any problems with this drug. But says she will probably get sick with the drug ATG on Sunday and Monday. I am hoping she won't get so sick with the drugs. So far so good. The transplant is going to take place on Wed., June 18th. This will be a special day. Not just b/c of the transplant, but this is also mine and Peter's 3rd year wedding anniversary on that day. We will never forget that date, that's for sure!! Saturday, I will be attending a funeral for a special friend of Maria's. Her name was Maria Jose. She was 2 1/2 yrs. old and lost her fight to Leukemia last night. Maria and my Maria would always play and wave to each other when one would pass each others room. My heart goes out to the family. This just hits so close to home. Needless to say it was very hard to sleep last night. Her room where she passed away was next to ours. I have never been around when someone has passed away like that. It was a very emotional night for everyone. It just makes you wanna hold your child and never let go. So please not only keep my Maria and family in your prayers, but keep Maria Jose's family in them as well. Please keep the prayers a coming. They are always appreciated and loved.

With Love,

Trish



****Don't forget about the Garage Sale For Maria this weekend****

GOD BLESS YOU ALL!!

stoney wrote:

HELL JC we know you look way cooler than that now!! Dharma said something about you having a stache like sauter but you use it has a combover across the top lol (kidding)??

i don't require any sort of comb-over. in fact, my hair is just about the only thing on my body that isn't falling apart.

UPDATE 6/18

Well as many of you know, today is Maria's bone marrow transplant. They are going to do it around 10 am. If you remember, please say a prayer for her, around that time, that this will work and ultimately cure her. The odds are against her but she has proven that she is a fighter. So please keep her and us in your prayers.

God Bless!

Trish

Count on it CP.

Latest update:




Okay, Okay. Sorry it has taken me so long to post about Maria's transplant. Well Wednesday came to fast for me. I was excited about the day and then again I was scared out of my mind. Here is how the morning went... The transplant was suppose to take place around 10 am. About 9:45 am the nurse came in and said that it would probably be a little later cause the doctor needed to do a procedure first. We said no problem. Me and Peter decided to go down to the cafeteria to get a bite to eat while my parents sat with Maria. Cafeteria was closed so we chose to just get some snacks from the gift shop. We sat down in the lobby by the window soaking up the sun. When my sister came in a hurry saying that the doctor was ready and that they paged us over the intercom. We never heard it. We got up to the room and Dr. Rooms said before we start we have to ask you 2 questions. We were like okay?.. The first question was, "Is this Maria Anna Arvanitis?" I made a joke and said "No her name is Shanequia". Then she asked "Are you expecting her to get a stem cell transplant?" Of course we said "Yes". When you hear the wod transplant you think like surgery (well that's what I always thought) but this type of transplant is quite simple in a way. They bring in this IV bag with this Dark red blood. It was a lot bigger than the doctor had anticipated. But said that this was good cause it meant more cells. And that's a good thing in transplant world. They hung the bag and didn't have everything ready. The blood comes frozen. As soon as they thaw it out, they have 20 minutes to get all of the blood into her body or it is no good. But by time they started, they only had 10 minutes left of viable time. The blood was very thick. The doctor told me and Peter to get a bucket and some towels cause as soon as the stem cells start going in most kids start throwing up very bad. Then she warned us that sometimes kids have reactions to it and that she would smell like rancid cream corn once it started going in. The doctor started the IV and sucked up the blood from the line and push it back into the IV line to get into her body faster. As soon as the doctor started Maria started to scream. Then her body started changing all of these weird colors. She went to pale white like a sheet to pink and splotchy and then turned blue and her eyes started rolling in the back of her head. I started to panic a little. All I could think about was that she was gonna stop breathing on me. I kept trying to put a cold rag on her head and face but there was nothing that was gonna soothe her. She just kept crying, screaming and reaching out for me. I wanted to pick her up so bad. Now remember me talking about the cream corn smell. Yeah I will never go around cream corn again. The smell was just seeping from her pores all day and night. I was getting nauseated from it. The doctor got all the blood in the 10 mins. I know she had to be nervous. She had sweat rolling down her face. Shoot! I would be sweating too!! Maria never threw up and as soon as the transplant was over she stopped crying. They premedicated her so she slept all day long. Which was probably good for her body. Her skin color after the transplant was a weird color. It looked like a bad spray tan and her eyes looked like they had been beaten. But by nightime she looked alot better. She was up and playing that evening. Like nothing ever happened. Since then (Wed.) she has been doing good. She has no immune system once again and is showing signs of mucasitis-mouth sores that can spread throughout the GI tract. The mucasitis is a very common side effect after a transplant or chemo. It is very painful for the kiddos and they have already started her on morphine. Now we are in wait and see mode. She has stopped eating and drinking on her own. She is on nutritional support through her IV. She wants to constantly watch Barney and have us feed him her pacifier. That makes her laugh. She loves to sing and dance. So me and Peter and even Papa Leon will get in here and act crazy-singing and dancing. She just grins from ear to ear. Her smile has given me comfort. The doctors are expecting her to get very ill in the next few days to weeks. Please say a prayer that this won't happen. She will be in the hospital for at least 4 to 6 weeks. Then she will get to leave if no complications. I am ready for a new lease on life for her. I am ready to start living life and not always questioning it. Thank you so much to all of you who have kept Maria and our family in your prayers. Please keep saying the prayers, as this journey is just beginning. Thank you! Thank you!



With So Much Gratitude,

Trish and Family

7/3 update:

Hello to everybody. So sorry it has taken me so long to post a update. Well... Maria has been doing good. Really no major problems. If you were to see her you would be shocked. She has been playing and just being Maria! I am so thankful for that. Yesterday she started having problems with platelettes. She had to be transfused 3 times in less than 24 hours. Platelettes is the stuff in your blood that helps your blood to clot so that you don't bleed out. Usually Maria has to have platelettes transfused every 2 days or so. The doctor was worried that she had built up an immunity to the platelettes. We found out this afternoon that she had not. So that was good to hear. She has to get shots in the legs every evening to help her immune system to come up. She was up at 4am this morning and when I went to change her diaper I noticed this HUGE bruise/bump on her leg where they had given the shot. I immediately told the nurse and she came in and said it was a hemotoma. It is very common with kids and the shots. I had to ice her leg for a couple of hours. I was surprised that she kept the ice on her thigh. This evening she started to have a little amount of blood coming out of her nose. We have to keep an eye on that in case she needs to have platelettes again. The transplant doctor has been stunned everyday she comes in to see Maria. She said that this is not normal that she has done so well. There is 2 other kiddos that just had a transplant and they have been so ill. One of them even sent to the ICU. But I seem to think she has done so well for me. I was so overwhelmed with anxiety before the transplant cause of the fear of the unknown. I didn't know how her body would handle the transplant. All we kept hearing was all of the negative and that she might not even survive. That gets to you after awhile. But my daughter has that spirit about her that is contagious. She is not ready to give up and neither am I. She is already starting to show signs that her immune system is trying to come up. Which that means the stem cells engrafted. They are thinking that she will engraft earlier than expected since she has done so well. That is nice to hear. I am so ready to leave the hospital. We have been in here for nearly 10 weeks. The plan after she gets cleared to leave we are going to be living with my parents until we find a home. It has been hard finding time to look for a house. Then Maria will be high risk for at least a year. She will be very succeptible to infections during that time. Me and Peter are hanging in there as much as we can. Everyday is a new day. I was telling Pete the other day that hopefully one day we can live a normal life and he said" what's that?" I chuckled as that was what I was thinking. Please continue to pray for Maria and our family. Have a safe Fourth of July!!!