Life as a princess

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4/27/2012 The Miracle has happened !

April 27th 2012 2:26 pm
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This is straight from Marielles journal !! OMG .. we can't contain ourselves !

Praise God is the first thing out of my mouth!!! WE'RE IN REMISSION!! I'd scream it from the rooftop if I could leave her side but I am too excited to leave the room!!

I knew and trusted that He would make miracles happen and so He did!!

I have to keep this short because I can't see through my joyful tears!!!

Thank you all for your steady prayers, love and support!! We will keep you posted on the next step of treatment. They're looking for the non-nephro toxic chemo drugs that they can use.
We will still have dialysis today and be working on resolving her kidney failure.
More later, I have some calls to make..We Love you all!!

AND THIS IS THE SECOND POSTING FROM TODAY !

Can we handle more good news, of course we can!!! The pathology report just came back and shows no permanent damage, no irreparable damage to the kidneys!! So over the course of a few more days or weeks the creatinine will creep downwards on it's own. She will still be able to have a little help from the dialysis which is easy for her, at least it has been this week. We are looking at another week or so of dialysis and then resume the next phase of the chemo.
For those of you that don't know or haven't heard, with the leukemia diagnosis comes 2 1/2 years of chemotherapy. The protocol changes over time, but she is now in the phase called LTM, long term maintenance. We continue to ask for your prayers, love and support and give all the glory to God, the Master Healer!
We will continue to share our progress on this remarkable journey of faith with you all! xoxoxo


Thank you all for all the support over these past 4 months .. it is still a very long road .. but at least we are now on the right road !!

Love you all !

Pat & Buttercup

 

4/26 Marielle update

April 26th 2012 2:47 am
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Marielle had a good day yesterday .. but there seems to always be more concerning news. Today they are going to biopsy her kidneys. Her creatine is still rising even with the dialysis so they have to find out what is going on with them. She can not have anymore chemo or antibiotics until they get them responding. They are looking for inflammation within her weakened kidney that she was born with. If they find it than it is looking like they will have to remove it .. OMG !!!!!!!!! Her spirits remain good .. WOW ! what a lesson she is teaching us ! They will have the results on Friday sometime along with the results from her bone marrow.. Right now i am praying that the bone marrow shows the cancer is in remission .. than they can deal with the kidney issue !! Thank you all once again ! We will update soon as we hear !

Hugs,
Pat & Buttercup

 

4/25/2012 Thank YOU everyfur !Dogsters Diary pick of the- day 4/23/2012

April 25th 2012 2:28 pm
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woohooo . ...!!!!! i was one of dogsters daily diary picks and i received special gifts from , Bailey, Hershey and Winkie, Krickette, Amazing Grace, Lucy, and George and his family ! I can't thank you all enough for helping to make my day so special and my page pawsome ! MWAH ! You pups and secretaries are the best !
Kisses,
Buttercuppi !

 

4/22 evening update

April 23rd 2012 6:28 pm
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woohoo .. POP really works ! Marielle did fine with both the bone marrow biopsy today ( results in 3 days) .. and her first dialysis . Right now they aren't sure how often or for how long she will need to be on this .. but for the last week she has been un able to eat much or to go to the potty .. all a result of the kidneys failing. They are still trying to determine what has caused this .. They think possibly the powerful antibiotic they needed to treat her blood infection with or an inflammation internally with in her already compromised kidney that she was born with. She is in pediatric ICU for extra care for a few days .. but we visited with her this evening and she was in good spirits playing on her ipad ! We will continue to keep you posted and once again we THANK EACH AND EVERYONE OF YOU FOR YOUR CONTINUED SUPPORT !

HUGS,
Pat & Buttercup

 

4/22/ Marielle morning update

April 23rd 2012 9:37 am
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Hi Everyone.. First of all thank you all for following Marielles journey ! All the prayers are so appreciated as we can never have enough of them. I went to see Marielle last night and was so happy to see her sitting up in bed smiling and working on sticker art! Her mood was good and even got some laughs out of her ! Her school principal came to visit and i think it really cheered her up ! Her ANC numbers continue to climb which is great news.. but the bad news is so does her creatine .. so today they will do her bone marrow biopsy along with dialysis. She will than go to pediatric ICU until she can return to the A wing ! I will go this evening to the hospital and will post an update later !

Thanks again so much !
Pat & Buttercup

p.s. woohooo .. thank you all for the gifts on my page for DOTD !!! Mom will try to keep up !

 

4/21 From Marielles Mommy

April 21st 2012 5:29 pm
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This is so tuff.. i know many of you out there have a family member or your selfs that are fighting this awful disease . WE send prayers to you all also !Please continue to send prayers to Marielle !This is from her mommy

Well Marielle's creatinine went from 5.4 yesterday to 6.2 today, but on a graph they are seeing the increase slowing down. Her ANC was up to 1008 yesterday,yipppeeee, we haven't gotten it for today yet but they are expecting it's even higher. She received a 1/2 unit of blood last night & was restricted to a liter of fluids all day, which included blood products, IV fluids and drinks. Today they have lowered that restriction to 500 ml. The problem is that the kidneys are working too hard just to eliminate the fluids present, so by restricting the fluids the kidneys won't have to work so hard.
The plan now is to watch this number (creatinine) tomorrow morning & Monday morning and if it hasn't gone down they have her scheduled for 11am hemo-dialysis, which will be thru her juggler vein, and the bone marrow test at the same time. This will reduce the number of times she will be sedated.
They won't know until afterwards how many times or for how long the dialysis will take place. We are taking this one day at a time.
There was no visit from Katy Perry last night, or phone call but our friend Jon got something autographed and that we are grateful for, I'm sure she was disappointed but as we all know she is a trooper and got over it before she even went to sleep.
So far this morning was a little rough, there was bleeding at the PICC line site and it had to be re-dressed twice . She is resting now and hopefully will have a quiet day. This morning was one of the toughest for me watching her struggle and hurt just breaks my heart! She said "you DON'T know what it feels like" and in tears I told her that all Mommies feel everything their babies feel and it hurts me for her. She saw that I was being sincere and that calmed her down, she held hands with me and peace entered her heart and mind.
We will do nothing or whatever she wants today, my guess is another movie-a-thon day.
I can't thank you all enough for the continued prayers, God and your prayers are what is giving me the strength to help her, thank you, thank you, thank you!!
Have a great restful day all! xoxoxox

 

Marielle update 4/20.. scary news

April 20th 2012 2:58 am
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This is from Marielles mommy
Well no news is good news most of the time, but not this time. I have been hesitating to write an update because I was a little too upset, didn't want anyone to panic and really had hoped the doctor's would come in and say they had made a mistake.
Well they didn't and so I'll update you all the best I can, it's really all quite treatable. The doctors have been watching the creatinine rising, it is supposed to be under 1.0, in the past 3 days went to 2.12 then 2.63 then today reached 4.24, essentially what this means is that she has Acute Renal Failure. They aren't sure if this was caused by the gentamicin which was treating the pseudomonas (and got rid of it) or by interstitial nephritis. Her kidneys are compromised already, this we know, so the next and new plan of action is to put her on peritoneal dialysis, by a pedi-cath.
This is temporary!! We don't know how long, how often or even when the procedure will take place. It may be tomorrow morning but we won't know until the morning lab results come in around 8-9am. If her creatinine level has gone up at all then the procedure will be in the morning, if that number has gone down then they'll check it again a few hours later and if still trending downwards then they may just watch over the weekend and then there's a chance the procedure won't be necessary at all.
She has been on a fluid restriction today, so her kidneys won't be overworked any more than they already have been, this hasn't bothered her at all because she hasn't been hungry or thirsty for a few days already.
The good news is her ANC went up to over 500.. at least her rate of infection is getting better .. if her numbers stay up it is possible they will do the bone marrow procedure next week sometime to see if the cancer has gone into remission yet.. Please say a prayer for our Marielle .. this is truly very scary !

 

New update 4/12/2012

April 13th 2012 3:13 am
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This is from Marielles mommy !
Hi all,
Well there's been a change of plans. There is a chance that the bacteria isn't completely gone and instead of putting in the PICC line and risking the bacteria showing up and attaching to the new line they are postponing the PICC line procedure until Monday. Her ANC numbers went from 30 Tuesday to 40 Wednesday then dropped to 12 today, with that said they have also postponed the bone marrow procedure until later next week. If her ANC goes up over the weekend then there's a chance they will do both procedures at the same time. That would be the best case scenario because then she will be under a lighter sedation instead of being put to sleep again.
Thank you all for the prayers and continued support . We know this is a very long road and we so appreciate everything !

 

4/10/12 Marielle surgery update

April 10th 2012 6:35 pm
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Just a quick update .. Marielle didn't get into surgery until around 3:00 this afternoon... and everything went well . She now has iv's in both hands , one for chemo and the other to draw blood . Looks like she is in for a while this time as her anc numbers are still so low and they won't let you go until they are at 500 .. hers are at 40 .. so i think they are ready to just kamp in and make the best of it ! Thanks once again for all the prayers .

Pat& Buttercup

 

Marielle update on infection

April 10th 2012 2:50 am
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this was from Marielles mommy .. her latest update from her journal


O.K. So they found out what the bacteria in her blood is and have it under control. The problem is that if it comes back it will attach to any foreign hardware and that means her port. Tomorrow morning surgery is scheduled to remove the port and it will be replaced with a PICC line in her right arm. They are hoping to schedule the bone marrow test this Friday but that all depends on her ANC recovering, today it's only 40.
She will get platelets first thing in the morning then on to surgery. She is doing fabulous, we talked this through and she understands. Her friend Julianna had a PICC line, so she has seen one and can relate it to someone she knows. In a month or two they will place a new port in the other side of her chest but we are just focusing on today.
Andrea stayed with her all day and then Marielle asked if she can spend the night with us tonight, so we've had a girls night and the boys are at home having a boys night.
While I was home today Marielle and Andrea had the princess treatment, they got hand massages, nails painted, received magic wands, American Girl paper dolls and other little goodies. I was able to spend a little time with Hudson before I came back up tonight, he was excited to have Dad all to himself tonight, so didn't mind me leaving.
Now I am ready for some sleep, which is hard to come by lately, but I'm sure once I close my eyes I'll pass out.
I'll update again tomorrow after the surgery. Thanks for all of your prayers!! xoxoxoxo

 
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