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Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge Him, and He will make your paths STRAIGHT.

Thursday, August 25, 2011

Day + 90!!!

Greetings Friends and faithful followers,
We had a pretty good day today. We saw Dr Wagner this morning and he said she is doing really good for this stage of transplant and that over the next two weeks we will watch everything closely and if we stay the same we will be able to go home!! Our plan is to leave either on the 8th in the evening or early on the 9th. We will be driving straight through all the way home. We will have to be back to our home hematologist either on the Monday(12) or Tuesday (13). There are a lot of details to work out between now and then but we have a bit of time for that. The main thing here is to pray and pray hard that the hemorrhagic cystitis stays away. That is the only thing that would keep us here...if it flares up in the days before we are to leave so please pray that it stays away!! Especially since we are flying my hubby up here to drive us home and he really can't miss any more work than the few days off as he is out of time.
Her counts were OK but we are going in the morning to get a CBC to check where they are. Then again on Monday to see the NP and to get counts and possible platelet infusion. On next Thursday she will have her bone marrow biopsy, then on the 8 we will discuss the results.
I also have another prayer request for a special friend of ours that we met here. Please say a prayer for Sam!! He is 30 days post BMT and he has to go back in for some more chemo (he has FA also) but he has 3% blast in his marrow. Please pray for precious Sam!!

Thank you all very much for your prayers. We all need them and we all appreciate them!

Tuesday, August 23, 2011

Day + 88

We had a pretty good weekend. Saturday we went out for a ride and to get Amelia some fried chicken from Kentucky Fried Chicken, she was not happy with it. It was spicy to her. We still had a good time just getting out and riding. Amelia loves to get out and just ride around in the car. Sunday we didn't do a lot the weather was so beautiful here. I cooked her some breakfast in the morning of biscuits and bacon for her and some scrambled eggs for everyone else. Then she and I went on a wagon ride...well she rode and I pulled her around the park across the street from the Ronald McDonald House and then we sat and watched some kids play soccer in the park. It was a beautiful day. Then we had some local friends come by and visit us for a while. Later Amelia talked my mom into frying her some chicken and making dirty rice. She ate pretty good.
Monday we had to go to clinic to get counts. It took us a little while because they misplaced her paper work. Finally her counts came back and they all looked pretty good. She had last had blood and platelets on Friday and her counts were White blood cells 4.6, Hemoglobin was 11.6 and platelets were 61. She was still a little low on her potassium and magnesium, but we opted not to infuse her and add them to her regular fluids.
We returned to clinic again this morning and her counts tend to bounce around, they try to reassure me that this is so normal for this stage in the game, but it makes me nervous and I want her to be better.....I KNOW...all good things come to those who wait..
Anyway her white cells today was 3.3, hemoglobin 11.1 and her platelets were 52. and of course her Potassium and Magnesium were both low to the infusion room we went to get potassium, magnesium and platelets. The NP decided to start her on some potassium supplements...pray that Amelia will be able to swallow them, I can split them in half but she hates taking pills period so it's a chore to get her to take any of them! We will see tomorrow morning. We return to clinic on Thursday to see Dr Wagner. There are a lot of things to discuss with him and I am sure I will forget half of it. One of the main things that Amelia is defiantly going to be asking him is when she can go home!
These are our appointments over the next few weeks, if every thing remains the same as it is now and PRAYING hard it will. Thursday the 25th we see Dr Wagner. Monday we see a NP and assess blood counts and the need or lack of need for products, Sept. 1st (Thursday) we go to clinic for health and history and then head down to peds sedation for a bone marrow biopsy. Then back again to the clinic on probably the 6th as I think they are closed on the 5th. Then our final (praying really hard that it is) appointment with Dr Wagner is on the 8th of Sept. We will be keeping her central line in as she will still need to be on fluids for this stupid HC and she is on caspofungin, and it is only given IV, she was unable to take the Voriconazole, she was allergic to that one too just like Marshall was.

If he tells us that we can go home we will be heading home that afternoon and we will not stop till we reach our house!!!! Other than potty breaks!! We are all sitting on pins and needles. I know that I will need to call and make an appointment with our home hematologist as I know that will be one of the conditions that Dr Wagner will say, yes we can go home as long as we are able to get into see the local hematologist ASAP!
Thanks for all the prayers, we really appreciate them all, please continue to pray for her and that we are able to return home, she is SO ready to be home!

Friday, August 19, 2011

Day +84

We went to clinic this morning to get platelets and we figured she would need red cells due to all the blood clots that she had over night. Surprisingly enough her platelets weren't that bad they were 48 down from 54. I thought the nurse had told me that they were 20 something, but when I got the print out it was higher. Unfortunately her hemoglobin went from 9.1 to 7.4 so we also had to get a dose of red cells too. We were there all day till about 3:30. Fortunately while we were there her urine had cleared up a bit. Through the night last night she had some pretty huge clots in her pullups and yesterday she had two doses of her pain medicine, which is something that she hasn't had in quite a while. Just changed her and it was a beautiful Pyridium orange!! Which I have two favorite colors now....BRIGHT YELLOW P color and PYRIDIUM ORANGE! I remember praying so hard for Marshall to have yellow p and here again I am praying for the same thing...ya know that saying about history repeating itself...well I am living it here. We will go the weekend with out a clinic visit as it really would be to the clinic it would be to the ER as they haven't set up clinic for the weekends yet. So we will go in on Monday to do a CBC and see if she needs anything and if so we will get them done on Monday. We won't see the NP till Tuesday and then on Thursday we will see Dr Wagner. When I sent him an email last night to ask about how long does this generally last this was his response to me:

"What you typically see is that it becomes less and less severe and frequent. It is gradual. Typically completely gone by 3 months after transplant or markedly improved. I have something from the beach for Amelia. John"

Well she has about a week and a half and it will be three months since transplant, so she has a lot of curing to do in that week....I know I'm not holding her to the 3 months, because that is typically and well there is nothing typical about Amelia!!
We are going to ask on Thursday if this will keep us from going home in 3 weeks from today!! and if it does not, will he please call and talk to our local hematologist to make sure they know all about the stupid hemorrhagic cystitis and how to handle it if it should flare up once we get home ( which I pray that it doesn't) I will be a ball of nerves over the next few weeks. I want more than nothing to go home, but at the same time I want the best for my child I want to make sure it is the right thing for her. I worry about her mental health, if we don't get to go home and have to stay too much longer than her time, I think she will get depressed...she just wants to see her dog!! She misses her brothers and dad we both do and it is a lot harder this time to be so spread out from each other!!
Please continue to pray for Amelia that she remain strong and that this HC goes away and stays AWAY!!! That her count continue to rise and stay on the rise, that her mental state stays just as strong as she ever has been! She is one tough cookie and has been through more than her fair share over her life time, but still she doesn't complain she just keeps rolling along with the punches!!
Thanks again for your support and prayers.....I will let you know how she does over the weekend.

Thursday, August 18, 2011

Day + 83

What a difference a day makes, today had been completely down hill. She is having blood again and some clots. Her bladder hurts and feel like she has to go. She is just so frustrated, please pray this passes and she does not have to return to the hospital! If we make it out over night we will go to clinic tomorrow morning for platelets and maybe red cells since she is loosing some. We are pleading with God to please heal her completely, she just wants to go home on time. She needs this for her mental state, I don't want to see her get depressed! Please God hear our pleas!!!

Wednesday, August 17, 2011

Day + 82

We had a pretty good day today we woke up and went to the sculpture garden and saw the Cherry and the spoon. There are some pictures below. We then road over to Roseville to go to JC Penney and then we had lunch at Ruby Tuesday's then We went to the show. We saw "The Help". Amelia has done pretty good, her urine has been yellow. Today she had a few big clots in her urine and then later just some little ones. I am a little worried she has went to the bathroom for a BM about 5 times, I pray it is over by the morning. The other thing is, she is complaining a little about a sore throat, like when she swallows. I am praying that it is nothing!!We will see tomorrow we are going to clinic. We will see where here counts are and all. We went on Monday and her HGB was 9.7 and her platelets were 55. We opted to give her platelets on Monday so that we could have Tuesday and Wednesday off of clinic. So we will go again tomorrow and see where her counts are. We may need to go Friday just to get platelets to make it through to the weekend. I will let you know. Below are some pictures from our day.

Thanks for praying for us!! It means a lot to us more than you will ever know!
~ Kelly

Friday, August 12, 2011

Day + 77

Happy dance!!
We are being discharged from here this afternoon, well closer to this evening. She will be getting some platelets and a bolus of fluid and they will even get her IV anti-fungal in for us so that we won't have to do that at the RMH tonight. I am I have to admit a little nervous of leaving the hospital. I just don't want this to return I want this stupid hemorrhagic cystitis to go away and stay away for ever!! We are planning of leaving here to head home of Sept 9th. We need all this to clear up and get better. I know though we will be going home on the fluids and we will probably be on them for a good while till her counts are up and her immune system is much better and can fight this!!
Thanks again for all the Prayer, she will in no way be out of the woods once we get home, but at least it will be home and we will all be together again. We will be traveling about 100 miles round trip to clinic in New Orleans probably 2 to 3 times a week, but it will be great just to be in our own beds and be a family again. I also know that at any time if she gets really sick or serious I am on a flight back up here!!
So please continue to keep her in your prayers. I will hope fully up date at the beginning of the week, or if she gets into trouble again. Thanks again so very very much!

Wednesday, August 10, 2011

Day +75

On Monday they turned the continuous fluids flushing the bladder off, later that evening they took the water away. On Tuesday they took the catheter out. Today was a day that they turned her continuous fluids off to see how she is going to do on her own a little. She had to drink 24 oz on her own today. Well it was a lot of work to get her to drink that 24 oz but she did it. We are still making her drink a little more than that. Not sure if they will let her out tomorrow or not. Her urine has been a nice beautiful yellow. We are finding out that she can't take a lot of medicines!! She can't take Versed, Voriconazol, Valium, Benadryl, I'm still trying to think what else. It has been a very interesting 4 nights!!
Well it is getting a little late and I am ready to go to bed so I better run and see if I can get Amelia off the phone and settled down. I wanted to let every one what was going on. If anything changes I will be sure to let you know. Thank you all for the continued prayers that are greatly appreciated!!

Saturday, August 6, 2011

Another one of Marshall's post with too many similarities.... I'll stop now till tomorrow!

Saturday, November 29, 2003 1:16 PM CST

DAY +72

I know that we are not suppose to question WHY? But I really can't help it. I am sitting here with constant tears in my eyes. We go through about two boxes of Kleenex a day in here. I can't stand to watch him in constant pain and feel like I am sitting on my hands. I hate this we are to the point where I want to run out and scream WHY??!! We are just about maxed out on the meds here. Dr. Orchard( who I just love) just came in and talked to me about the pain meds, he said they are really trying. He also said he was going to try to get a hold of someone in Urology but.....we all know to well how that goes and after all, it is SATURDAY!!!!!!

He is on, Fentnal, a steady drip with a PCA pump ( which means he can give himself a bump every 15 minutes, Adavant, a mild sedative, 17 1/2 mg every 4 hours, Ditropan, a type of muscle relaxant every 4 hours, Benadryl 50 mg, every 4 hours and at times he is asking for the phenagren to help him sleep. He is hooked back up to the o2 sensor so we can keep an eye on his heart rate and his oxygen levels.

I hate this so much, we have seemed to trade one problem for another. We get rid of the clots and we trade them for bladder spasms. I have just been sitting here timing them and they are coming every 10 minutes with one just as intense as the next. We had the bleeding under control or so we thought, it had been running clear but now today we are seeing a little more red in the water (irrigation stuff filtering through the bladder).

I can only, at this point is beg God to PLEASE HELP him!!
PLEASE Don't give up on him please help us to continue to pray for him he is so tough to put up with all of this and he hardly complains, every now and then he will ask why but it is usually when he can't take anymore!! And right now I don't know how he hasn't lost his mind, because I feel like I am about to this has been going on for 9 WEEKS. Please continue to pray and pray HARD PLEASE???!!!!!!


Marshall's day +70 about Deja Vu !!

Thursday, November 27, 2003 5:00 PM CST

DAY 70

****** HAPPY THANKSGIVING ****************

We have traded the clots now for constant spasms. The only thing that helps some is a benosupository and Marshall is not wanting to take them right now. Maybe we can talk him into one later. Marsh and I spent the day at the hospital while dad spent the day with Amelia and Nathan at the RMH. Papaw will be staying with him tonight. There is, as a parent, just so much that you can watch your child suffer through.

by: Mark Schultz

I am down on my knees again tonight
I am hoping this prayer will turn out right
See, there is a boy that needs Your help
I've done all that I can do myself
His mother is tired
I'm sure you can understand
Each night as he sleeps
She goes in to hold his hand
and she tries not to cry
as the tears fill her eyes

Can You hear me?
Am I getting through tonight?
Can You see him?
Can you make him feel all right?
If You can hear me
Let me take his place somehow
See he's not just anyone
He's my SON

Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is YOU!
Let him grow old
Live life without fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You are there

Can You hear me?
Can You see him?
Please don't leave him....
He's MY SON!

I hope everyone had a great THANKSGIVING. Will post tommorrow after the docs come around and give us an explanation for how long the spasms should last. The water is running clear with a little bit of pink every now and again. PLEASE continue to pray for him. He is trying to be so strong and yet he is being very stubborn too...........


Friday, August 5, 2011

Just to lighten the mood....

I was reading journal history on the caringbridge site that I kept while Marshall was going through transplant and came across this and thought it was worth sharing. (PS at the end)
Wednesday, August 15, 2007 9:18 PM CDT


Trip to local grocery store...$2.67 for a gallon of gas.

Bag of NEW Chips....$2.49

Look on 4 year olds face tasting the NEW chips.....


PS: they gave Amelia a BNO suppository and she has been sleeping since about 3pm which is a good thing they gave her vailum at 6 which should halp keep her rested and they will give her another BNO around 10:30 her fluids have been turned down quite a bit because her urnine at this time is 100% clear not even yellow...clear. Thank You God and thank all of you for saying prayers for her now we just pray and pray that it continues on this track for the rest of her life!!! NO MORE BLOOD GO AWAY AND STAY AWAY!!

Day + 70 and no end in sight....

Sorry had my #'d days mixed up. As most of you know we are back in the hospital, looks like we will be for a while. They placed a catheter in her yesterday a 3 way....Deja Vu... One just like Marshall had all those years ago. They were able to irrigate her bladder and get a lot of clots out. I don't want to turn this into a pity party, because I'm not the important one she is. I'm trying to be strong for her, but my stomach hurts so bad that I feel like I'm going to throw up! My family is again split up. Ty and the boys flew home yesterday amongst all of this commotion and I didn't get to tell Ty or Nate goodbye which broke my heart but I had to go to peds sedation with her. They put the catheter in and she had some relief. Some of the pain and discomfort now is from the catheter being in. I just never thought that life would be this cruel to have to watch another child suffer through the exact same thing. Life isn't fair at times. I try to stay strong and positive but how do you do that when you keep getting shoved down!!! I just don't understand she started with this on June 24th and it was bad but then it eased up, she was able to get out of the hospital and it was getting better it was actually gone last week. Her urine had been yellow with only a few tiny specs of clots then last Friday almost over night it returned with tons of blood and huge clots!! I feel like I'm having a really bad dream and can't wake up. I have begged and pleaded with God to please heal her and make her better, I've also told and asked God that if you are going to take her to please don't let her suffer like this in pain, for He is the only one who knows the future and the plans he has for her. I guess you could say I'm dazed and confused and totally numb, I'm angry and aggravated. I can only imagine what she must be feeling!! I just wish he would take me instead!!

Marshall was here when she was screaming in pain and he was crying so hard he couldn't stand to see her in pain and I am sure it must have brought back a lot of memories.
They are starting her on a dilauded drip to help manage her pain. I know I have asked this before but please help us ask God to heal her completely. I want her to be the spunky little girl that she is!!! I don't want to have to be here like I was with Marshall for 9 months, but then again I will do what ever it is that I have to do to bring her home safe and sound. It was easier with Marshall in the fact that my kids were all here with me. I think that is part if why my tummy hurts there is no more Nater hugs for me to help ease some of this pain!!

Really Trusting In Him!!!

Thursday, August 4, 2011

I don't know what day it is, I don't care what day it is. I need all prayer warriors to please pray for her!!! She is in so much pain!! She is screaming in pain. I'm begging God to please help her. I don't want her to give up but I can't stand to see her in so much pain. It's pretty bad you can hear screaming down the hall....PLEASE PRAY FOR HER PLEASE THIS IS SO HARD TO WATCH AGAIN!!!

Tuesday, August 2, 2011

Day + 66

Greetings friends and faithful followers,
We are praying hard for Amelia. We seem to have taken a lot of steps backwards here. We were doing great and counts were looking good too. Monday was clinic and white blood cells were down to 3.0 and platelets were 22, hemoglobin was 10.4 but she had red cells a week ago. The hemorrhagic cystitis is back with vengeance. We were celebrating yellow pee and teeny tiny blood clots last Thursday and now we are back to pure blood and major clots, basically over night! We are both beyond frustrated. There are times I think we might need to go to the ER because she can't pee...then she sits and relaxes and is able to go, but unfortunately it is now pure blood when she is going. I get so depressed. She has stopped wanting to eat. I just feel like we have hit a brick wall and there is no way around it. We have about 6 weeks left here, but that may be extended if things don't improve.
I never thought that I would have to for a second time in my life pray for yellow pee and for a child to be able to pee with ease. It is just so dang frustrating!!