Life as a princess

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7/20/12 Marielle update

July 20th 2012 6:22 pm
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Marielle had her kidney procedure last week , and on Wednesday of this week they did a nuclear test that determined that the procedure was successful. She went back into the hospital today for the 2 of 4 high dose chemo treatments. Normally your body should be able to push what isn't used out within 3 days .. but last time it took her body 10 days along with horrible mouth sores and nausea as a result. They are hoping that with the kidney working better that her body will push it out faster this time and we are praying that she doesn't get the horrible mouth sores and nausea !!! These past few weeks she has been able to be some what of a little girl again. She had permission to go to day care with her friends , to go swimming, and to go to movies, and it has allowed her mommy to get a few hours in at work. We continue to thank you all for following her through this journal and for your prayers. Oh .. and we must tell you that her grandma has been teaching her how to sew and she is designing clothes for her American doll !

Thanks so much again ,
Pat & Buttercup

 

7/6/2012 Marielle update

July 6th 2012 2:44 pm
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We are happy to report that Marielle is home , the mouths sores from the last high dose chemo have finally gone and their air conditioning and power has been restored. Her spirits are good.! They still haven't done the kidney procedure as her ANC numbers ( rate of infection .. must be 1000 or higher) and hers are not high enough .. this is something your body must produce on its own. So for now she is eating good , going to the movies , and doing child things. This hospital stay was just over 2 weeks.. so as you can imagine it gets old for her and her mommy !

The storm that rolled through our area last friday evening caused so much damage and so many folks have been without power.. we were very lucky and never lost power , thank god ! .. but a week later there are still many residents that are still without ! We have had a week of 95-100 degree days with good ole Maryland humidity ... tomorrow they are predicting the worse of 105.. so we are staying in and staying cool !

Thanks again for all the comments , prayers and rosettes .. hopefully everyone had a great 4th of July !

Stay cool,
Buttercup & Pat

 

Marielle update 6/26/2012

June 26th 2012 4:35 pm
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It is now day 9 since Marielle went into the hospital for the high dose chemo treatment. It has taken her body longer than expected to flush out the chemo ..but finally today the numbers came back that it is gone . Her mouth is filled with nasty sores that hurt and have been bleeding, as result of the chemo. They are giving her morphine every 6 hours for the pain. She hasn't eaten since they went into the hospital 9 days ago so they started her on IV nutrition. She isn't talking as it hurts to much so she is using a caulk board. They hope that in a few days she will go home. Once again we thank you for all the prayers and continued support !

Pat & Buttercup

 

6/18 from Marielles journal .. just posted from her mommy !

June 18th 2012 12:29 pm
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Hi All,
Well we were here this morning at the clinic at 8:30am, didn't get the blood work back until almost noon, her ANC was perfect; 1044.
We came down to the PACU and were prepped for the spinal tap methotrexate. She went in with a good attitude and now is sleeping next to me in the recovery area.
We will be here for another 3-5 days depending how quickly her body flushes the chemo out.
Now for the even better news.......while we were in the clinic her kidney doctor came in and had a consult about the kidney surgery/procedure. He said he had spent more time studying her films, tests and labs and has determined that the best plan is to do a less-invasive procedure where they will go in the ureter puncture a hole and that could "do the trick".
This is good news because what we had already discussed was a much more involved surgery 3-4 hours, that could have resulted in a 4-5" scar, a drainage tube and possibly a 4-5 day recovery time. Now this is an out-patient procedure and is tentatively scheduled for July 2nd, and be only about 45 minutes. If this goes as planned once the surgery is done that ureter seal blockage should be cleared and the enlarged tubing should shrink and quite possibly have no further problems. That is what we will hope for and trust her body to cooperate ;0) We know God is protecting her and will heal her!
With todays' spinal tap chemo, her body will rid itself of the chemo by a rush of fluids over the next few days and she will be encouraged to pee at least every 2 hours. Her ANC will drop to zero in about 7-10 days and this will possibly be the worst her body will feel, but we are so grateful to have been able to get this done today and then to have also gotten the good news about the kidney.
We all had a fabulous weekend, went to see 3 movies!! Men in Black 3 in 3D, Madagascar in 3D and for Father's Day took Daddy to see the Avengers, he loves Captain America!
Marielle had made him cards from her and Hudson but then she made him the cutest coupon book for different things like 1day of total control of the remote control for the TV, homemade dinner, afternoon to nap, weekend to sleep in, dessert of his choice, and 2 blank coupons to fill-in anyway he'd like.
Lastly, Hudson lost his other front tooth last night and of course the Tooth Fairy came. He actually asked me to pull it out since he was starting to look like snaggletooth. Oops and one more thing, this morning when we were getting ready to leave Hudson said to Marielle, "have a good day at the hospital today Marielle." mike and I just looked at each other and were both in awe of his kind spirit and love for her! He was excited for himself because today was his first day back to Ms. Carol's which is where he'd go everyday of the year if he could! He gets to see Ms. Carol and his friends since birth, Sarah and Max!
That's it for now, sorry for such a long post. Have a great week everyone! We Love You!!

 

6/18/2012 Marielle update

June 18th 2012 11:40 am
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Marielle finally was able to get her chemo treatment today . This is a very high dose given in the spine. They are planning on a 3-5 day stay at the hospital. The removal of the kidney has been postponed as they are behind on her treatment and they really need to get back on course. Prayers.. well you can never have to many ! We will keep you posted. Speaking of prayers .. if you have a few our good pal Miss Dixie had to go to her surgeon today as her right paw is very very swollen. We are saying prayers that it isn't anything to serious. If you can add her to your prayer list we know she will greatly appreciate it !

Guess who came to my house yesterday.. my cousin LILLY .. she hasn't been over in a long time because her sister Lopey had been so sick. Since Lopey is an angel now her mommy and daddy have to start socializing her all over again.. She was nervous in the beginning .. but she calmed down and we think had a good time as she fell asleep on the sofa ! I think she will come back soon !

Hope all the dads had a great Fathers Day !

Hugs,
Buttercupi & Momma Pat

 

6/14/2012 Marielle update

June 14th 2012 2:52 am
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We have lost track as things have gotten very crazy at our house. Marielle's birthday party went off last week-end. It was a carnival theme fully equipped with a snow cone machine and old fashion popcorn machine . The kids had their faces painted and fun having water gun battles and jumping in the jumping house. Marielle managed to get her face painted and than wanted to go back to bed. She was happy knowing her friends were having a good time. She was awoken to blow out her candles and to open presents. It was very hot so the heat wasn't the best for her. Monday morning she had to be back at the hospital for a 3 day stay for a chemo procedure but on Sunday evening she spiked a high fever and had to go in early. Due to that they did not do the procedure but she had to stay for observation. She came home yesterday but has to go back today. They will recheck blood and possibly do the procedure today which will be at least another 3 day stay ! Oh she is very tired of all of this .. but we all trudge forward. I have been babysitting with Hudson ( her brother) since school is out and i must say he is such a joy to be with. His eyes are so expressive and we have had great fun just relaxing at home playing good old fashion board games. It has done my soul good !

Now for a Buttercup update. Her stomach has finally settled down after a 2 week up and down of gastritis i think i have things back under control . I actually have gotten to sleep 5 hours straight for 2 nights in a row. We see Dr's. in about 3 weeks for repeat blood work to check her kidneys .. but i think they are better since she is finally responding better. We will keep yas posted !

Hugs to all ,
Pat & Buttercup

 

6/5/12 Marielle Update

June 5th 2012 3:50 am
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Just to keep you up to date , Marielle is doing pretty good at the moment. She hasn't been able to get the regular chemo treatment due to her kidney function, so she has been on a less toxic routine. They tested her kidneys yesterday to see if she can get back on track and they will get the results today. Her birthday bash is for this Saturday as it was cancelled 2 weeks ago because she was in the hospital. She is tentatively scheduled to have her compromised kidney that she was born with removed on June the 20.... we will keep you posted ! Thanks again for all the support !

Pat & Buttercup

 

5/25/2012 Blood results

May 25th 2012 1:23 am
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Hi everyone.. we got Buttercups blood results yesterday and boy is it much improved ....Her BUN went from 165 to 85 , creatine 3.5 to 2.5 and her phosphorous went from 10.8 to 5.4 .. amazing that diet and medication change can make such a huge difference in 2 weeks.. things are still high but so much better. She may have a slight tremor but most days she isn't having them at all. The doctor says the increase in her medication is helping the blood carry more oxygen to her brain .. THANK GOD !! so for now we are on an up road !! woohoo ! If we can get her itching under control that would be a bonus.. we are switching antihistamines and he suggested trying plain old baby shampoo since the prescription shampoo and oatmeal shampoo doesn't seem to help at all.. Thank you all for all the continued support !

Now a quick update on Marielle.. she spiked a fever so she is back in the hospital .. hopefully just for a quick observation and pray there is no infection any where ! Her birthday party is Sat. so we hope she will be home in time ,, if not than a make up date is set for 2 weeks ..

Hugs to all ,
Pat & Buttercup

 

5/23/12 My doc visit

May 23rd 2012 11:10 am
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I had to go back to see Dr. Ferguson today my cardiologist to follow up from my visit 2 weeks ago. Heres the positive news.. i had chest x-rays that showed no fluid around heart or lungs.. woohoo !!! Mom was worried as i have been coughing and gagging like crazy ! my heart is huge .. but we already knew that. They took blood which we will get results tomorrow afternoon. We are SO HAPPY that my tremors have just about totally stopped., ( some days not at all ) which indicates that the new dosage of medication is working.. woohooo ! He upped another medication today to help keep the blood flowing in the proper direction and to keep oxygen going to my brain so i won't have those terrible tremors ! Depending on blood results he may add another new medication that won't hurt my already compromised kidney issue. He feels that my kidney issue is coming from all the medication that they must use to help my heart .. they cut back on my lasix and we stopped the digoxin as it was making me not want to eat. I also have been so itchy .. and we will be trying to figure out if it is environmental or what ..depending on my blood report we may try a new medication for the itching, if it works than we will know it is plain ole allergies.. I am resting like a princess on my pillow .. and we will update after we hear back on the blood report tomorrow. Thanks everyone !

Buttercup & Momma Pat

 

Marielle update 5/22/12

May 23rd 2012 2:41 am
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HI folks.. Marielle had her pic lines removed , a new port put in , chemo in the spine ( which they had problems with but finally got it done with several doctors assisting) and they did 2 test on her kidneys to determine if her kidneys could take the next phase of treatment. As it turned out the results weren't what they had hoped for , so they will repeat the test next week and hopefully they will get the results needed to proceed with her treatment. This is very important as she must stay on the protocol to battle the leukemia . The good news is she will be home for her birthday ! yipppeee !!!!! Thank you for all the prayers .. you are the best support team around ! We will keep you posted ..

Buttercup here ...

Now .. today i go back to cardiology for my 2 week check-up to have my blood pressure checked , blood taken ,and to have my heart listened to again .. and possible chest x-rays. Over the week-end i was coughing my head off .. but the last 2 days i have been better, which makes mommy very happy ! I am finally eating better and my tremors have gotten better.. somedays i don't have any .. and others just one or two . We will let yas know what the doc's say later today !

Have a great day !

Buttercup & Pat

 
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