Prayers...

Please pray that Amelia's sudden weakness and muscle pains are cause by the Bumex that she Just started taking yesterday!!! The symptoms just started to get worse today... She is so weak she can hardly turn over in the bed. It hit me when the nurse came in tonight to give her nightly dose. That's the only thing that they changed medicine wise, so I decided to look up the side effects....well low and behold there it was!!!! I immediately got the nurse to ask the doctor and I told the nurse I am refusing her 3:00 dose... When the team comes on in the morning they can just pit her back on Lasix!! Please pray that we see a "perk up" in her by sometime tomorrow!! Her fevers are getting better and her infection seemed to be getting better and here she is getting weaker, please let this be at least ONE freaking answer for us!!! I need her up and walking these halls and riding the trike again!!!!!

Sent from my iPhone

Prayers....

Since my last update she continues to get weaker and hurts every where when she moves. Her jaws are in more intense pain than before. I know Amelia and she is really tough, and can stand a lot of pain. This is not my Amelia!! I called the docs in to examine her, they are running some blood test on her and since MRI couldn't fit her in today we are now going down to do a CT of the neck. One doctor said something about the muscles might be breaking down and if that is so they will try to rid the body of toxins. Not that I understand that. They have to figure out if it is the meds that are doing it or something else... I'm not sure I understand it all. I'm just here begging and praying to God to please hear our prayers and help to start heal her!!! This is not my Mimi, I want my little girl back.... I want her to be back walking the halls and all!!!
Please pray they figure ALL of this SOON!!!!

Day 33 & 34

Well we had a few better days and nights as far as the fevers go. I have been here for the past two nights and on Tuesday the highest her fever got was 102.6 at about 12:30 then she has one at 8:30 in the morning and it was 101.5 then she went almost 15 hours with out a fever! Her fever hit again around 12:30 and it was 101.6 then this morning at 8:30 or so she had another one that was 100.7. We gave her Tylenol but she threw it right up, and before we could get her more they were coming to get her to take her to the eye clinic across the street. At the eye clinic she had a great check up, Thanks goodness for small miracles. There was nothing wrong with her eyes the only thing that they could see is that she is a little near sighted, but when they put the prescription on they really didn't get any better...so we will return to our Optomologist when we get home. With that great news we put the spinal tap on hold. They wanted to do a spinal tap to see if maybe there was an infection in there that they are not seeing. That is just such a rough procedure that I didn't want done unless absolutely necessary. When the doctors came, they want to do an MRI of her neck and jaw which is a spot that is giving her a good bit of pain (where the cellulitits is) I still wish it would form a pocket so that they could go in and drain the infection out and be done with it. They still think that is where the fevers are coming from. I hate this waiting game. In the mean time of all this waiting she is getting weaker because she is getting lazy and all she wants to do is lay in the bed. The bladder is pretty much the same. They are giving her constant fluids at a rate of 50 mls per hour, which has her weight up and she is puffy from all of that. We try to get her up and walking at least two trips around the hall but as it is one trip is quite a chore for us to get out of her. I keep praying and begging for another miracle for another one of my kids!!!

Nathan is having a blast or so they say in the great state of Wisconsin!! It's a little weird to have 3 kids in 3 different states! Marshall is doing fine with his splint on his ankle and it is not broken or fractures just a really bad sprain with some torn ligaments.
Counts continue to be stable, although today they took a bit of a drop, but not out of the regular range....

Wednesday's (day 33) Counts
wbc 6.4
ANC 5.2
Thursday's (day 34) counts
Wbc 5.6
Anc 3.4
I hope and pray we see no more drops in the counts!!
That's all for now...waiting to see if we will have the MRI done today or not!!
Blessings,
Kelly

Thoughts for the day:

Our life's a stage, a comedy: either learn to play and take it lightly, or bear its troubles patiently.
Palladas

Day + 32

Not much to report here SOS!!! fevers still persist as high as 105, with out no known cause. The BK virus came back negative. I'm afraid of the others that they may test for scare the jeebies out of me. She is still having a lot of blood and blood clots in her urine but thankfully her pain has been under contol with the pyridium and ditropan. I'm trying to not get depressed, cause normally I am not a depressed person, but I so wanted this transplant to be so different, and it just seems like we are following the same path. The high fever scares the crap out of me too! I'm praying and begging for a better fever night...actually praying and begging for them to go away as quick as they came!!!

Marshall seems to be doing OK with his ankle it hurts like heck he says, the ligaments on both sides are torn up. I tell you if it's not on thing it's another.

Nathan is leaving tomorrow to go to sibling camp at Faith Lodge in Wisconsin. I'm going to be worried sick while he is gone, but it's hard to say no when it's something he really wants to do. He has always been so shy and since we've been here he has come out of his shell. They leave tomorrow at 1 and will be back Friday around 1 or so too! Please say a prayer for him on this trip.
Well going to take Mimi girls temp then hit the bed for a quick nap!
Blessings,
~ Kelly

Day + 31

Greeting from room 4122.....
She is still having really high fevers, just this morning it was 104.5....so frustrating to not know the cause of these high fevers. In a way you want to know so they can treat them properly, but then you don't want it ti be anything serious!! The blood in her urine continues along with blood clots. How I so wish this would be a mild case. I can't really tell you what color the urine is as she has resorted to wearing pull ups. (God knows she is going to get me for putting this out there) But she said she has no control over her bladder and she says it doesn't hurt when she is laying down to pee. She was able to take and keep down the Pyridium. Which I really think is helping her pee pain free even if it is in a pull up! At least we are not getting up to go potty every 5-10 minutes cause she feels like she has to go!! I changed her a while ago and a few minutes later she had a smile on her face, I asked her what that was for...she said I just peed....I'm so glad it was pain free. I hope they figure out some things and soon. I am trying to stay positive, but given our history with this it just makes me so sick to my stomach!!! Another development is that her right leg is hurting. It started with her knee hurting and now it is most of the leg. I told you to hold on!! It was going to be a wild ride.. Makes me remember when she was little I think 4 and she got her first Barbie VW bug powerwheels we found her a sign that said... sit down hold on and shut up! Although I'm not shutting up, but I feel like I'm hanging on for dear life.

Then on the home front I get a call from the hubby saying Marshall hurt his ankle at church playing basketball, that was Sunday night. This morning he calls and said it was all swollen, so I told him to take him to the pediatrician...so he had xrays and all done. Not sure what it showed but regarless he needed a boot if it is fractured they will put a cast on it. I just got a call from Ty he was at the medical supply place to get the splint.....$85 freaking bucks for an air splint...oh the joys of motherhood.
Well I better run I'm waiting on the docs to come and assess her.

Her counts remain really good
Yesterdays were a little high and had me concerned.
WBC 10.8
ANC 8.9
she's still getting red cells and platelets thanks to the hemorrhagic cystitis
Today's
WBC 7.2
ANC 5.6
TTFN!!

Day +30

I am trying to stay strong and positive... But it's not working! I am dying inside my heart is melting and the tears will not stop! I am just plain ole pissed off, at who or what I'm not sure. It just kills me to watch another of my precious babies suffer so. She is in so much pain and nothing is helping her. We were literally up every half hour last night sometimes sooner. There is now no urine, just blood and some clots here and there. I swear it's just like watching Marshall all over again like a bad episode of a pregnant woman trying to give birth. I hate hearing her say that she can't do this any more or asking me to make it stop! Cause if I could I would be there in that bed taking all her pain!! I thought I could stay positive, but I'm just so angry that this happened to her. I don't care how long we are in the hospital, I just. Want this hemorrhagic cystitis to just go away. The results if the BK virus hasn't come back yet, I feel in my gut that this is the cause of this and not the Chemo. She did so well with going to the bathroom during Chemo.
It is now that I sooooo wish that we wouldn't have come for transplant. I know that there really wasn't much other choice. Her counts were failing really badly. I still just keep blaming myself!! If only we wouldn't have come to transplant, my beautiful baby wouldn't be suffering!! They keep telling me they have changed the way they deal with this and that it shouldn't last no where as long as Marshall's did...but I don't see them doing a damn thing here.
Right now we have resorted to wearing a pullup and she is sleeping, she said she pees on herself when she is relaxed and it doesn't hurt as bad... I told her to just go don't worry that you are wearing a pull up we will change it!!

Well I guess I've vented enough for now anyway.
I don't have anything positive to say, not at this time anyway and I don't know when I'll get back for an update...going to pray and BEG God some more....although I have been... I just don't think He hears me or wants to hear me!!

Midnight up date.....

Catheter was a no go they tried but the nurses didn't have much success, we consulted urology and after much discussion decided against it. They did a bladder scan and found that, thankfully the bladder is not full of urine. If you have ever had a bladder infection you feel like you have to go ALL the time. So the plan for tonight is to give her some fental instead of Dilauded on a steady drip with the bumps as needed. Also going to get some Valium for her bladder to relax. Our goal is to keep her as comfortable as we can, because unfortunately with hemorrhagic cystitis we have to keep the bladder flushed, if not they will develop clots in there and we don't want that to happen.
I know we are not to question why things happen, but I just can't help it. Marshall went through this and had a seriously bad case of it and that is why he staid in the hospital for 5 solid months! It was one of our worst night mares come true...we were so hoping that she would not have gotten this. I can't help but feel angry that this happened. Why do I have to watch another child suffer so. I know that there are reasons for everything, but this was the one thing that I asked and prayed to God to not let happen. The doctors have reassured me that their treatment has change a lot since Marshall's day, but still it is just something that NO one should have to go through.
Anyway enough venting I am a mom and I gotta do what I gotta do to get my child better out of here and all the way back home to Louisiana to see her doggies Chico and get her a new toy poodle puppy!!!
Trusting in Him,
Kelly

If you have faith as a grain of mustard seed, you will say to your
mountain, "MOVE!" and it WILL move... and NOTHING will be
impossible for YOU!
- Matthew 17:20

Day +28

things have only gotten worse...one of the nurses last night had her rate at 10 mls per hour and not the 30mls that is was suppose to be. She had been doing better with her urine till about 5:30 this morning so my dad says. We arrived here around 9:30 and I didn't notice the rate till about 11:30. They did raise it back to the 30 mls. But now she can not pee....please pray for little baby girl...we have come down to having to put in a catheter.
Counts are still good
WBC 6.6
ANC 4.3
Hgb 9.4
plts 34

Update coming

I promise a proper update is coming. Her urine didn't have as much blood in it but she did have a lot if pain in the bladder. She got outside for a while today and she loved it!! Her counts remain good! WBC 6.1 and ANC 4.3 still having fevers though...so frustrating!

Sent from my iPhone

Day + 26

Well, well, well where oh where do I begin? Total frustration.. Still having fevers and still having the cellulitis around her cheeks and under the chin. Fevers still coming and going. My dad had the over night shift last night and she did pretty good through out the night. I spent the day with Nathan as I hadn't had a night with him since last Thursday.

As we were sitting down to dinner I get a text from Amelia.... My heart sank, my stomach did flip flops and I felt like I was going to throw up!! Here we go history repeating itself, one of my biggest fears has come to!! She is now having blood (a lot ) of blood when she pees!!! I can't help but blame myself, I know it's not my fault but it's just the way I feel. It's hard to explain...
We were so hoping and praying that this transplant would be so different and that things would go differently and smoothly and she would be out of here going back and fourth to clinic, but it doesn't look like things are going to work out that way, we may not even be home in September as we had once hoped before either. I know people say look on the bright side and stay positive... Well truth be told, having traveled this road once before... I just can't see a freaking bright side!!!

Day +25

I've tried to pull myself to the computer all day...but I, for once, am at a loss for words...I know shocking huh? I feel like we were making great progress only to be backed against the wall and now we are at that wall pushing all the bricks to see which one will open the secret passage. One thing, if you know us, we will push every single brick till we find that passage and I am positive that there is a magic brick. It just takes patience and lots and lots of faith. Something I learned a lot about...say oh almost 8 years ago when another child was here! So we keep climbing back up on that really high horse no matter how many times we get knocked down, or feel like burring our heads in the sand, like I felt yesterday.

Day +24 was a day that felt to me a waste. All she did all day long was sleep. I'm sure not by her choosing. She has been getting benadryl for premeds and then she is getting ativan for her continued nausea, which unfortunately is brought on by the extremely strong antibiotic. She was up maybe four hours or so which started at about 5:30. Then all night changing the bed pad and underwear.(she will kill me for this one day). Along with the nausea comes diarrhea....not fun...we had tried to switch some of her meds to oral, but she is unable to keep it down. So I won't worry about all that right now, because I know that she needs this strong antibiotic to get rid of what they think is cellulitis in the jaw, cheek and under the chin area!

So today was a little better, we tried to get out the room and do a lap or two..but we were only able to do a half one, so we stopped and picked out the movie Bridge To Tarabithia. She watched it and stayed awake through all of it. Her bone marrow biopsy results came back at 15% cellularity, which is right where they expect it to be at this point and she is all 100% donor!! Meaning it is working and her marrow is all donors and not any of her own! Great news. Her counts for today were
WBC 6.1
ANC 5.2
HGB 9.9 and
Platelets 13
I am sure she will need platelets tomorrow.

She is unfortunately back up on her weight because that is one of the meds that they tried to switch to oral, lasix. SO today and tomorrow we are going to be trying to play catch up to get her back down to where she was.
I am completely exhausted, I've been here for 4 nights, only leaving long enough to run the the RMH to get a shower and back again. I totally, at this point, feel that two steps forward 4 steps backward saying. I really want to see forward motions from here on out. We just need this infection to go away. ENT said if it would abscess or go to one "pocket area it would be a little easier because then they could go in to the OR and drain it. They are keeping the strong antibiotics going as to avoid any MRSA! So please continue to keep her in your prayers. Pray that we find that magic brick that leads us down the path to getting out of this hospital!
Until tomorrow...
Blessings,
Kelly

Thought for the day:

Don't ask for a light load, but rather ask for a strong back.
- Anonymous

Day + 22 & +23

Greetings,
Friday was bone marrow biopsy and that afternoon and Saturday were two steps back with the way she was feeling. She slept all day and didn't want to walk at all. :(. Saturday night we did get her out for a walk around the hall. She was still running fever really high on Friday night of 104.2. That prompted the doctors to get Infectious Disease doctors involved. They came in on Saturday morning and started to examine her. They ordered another CT exam, this time of the neck and abdomen. Well they had to make her drink that nasty contrast just as she was finishing the contrast they come in and tell her that she can have the test because she just had one and they need to be 72 hours apart. She was upset and I can't say I blame her!! Any way on Sunday morning the ID doctors were back I mentioned to them the puffiness in her cheeks, she looks almost like she has the mumps. When she talks she kind if sounds like she has marbles down there when she talks. The CT was done Sunday around 1:45. Anyway to make a long story short we think we know where the fevers are coming from. They think there is an infection in the glands under her chin and on the sides of her cheeks and neck. It has gone down some but one of their concerns is MRSA!!! Please pray that this all resolves it self!! With out any complications!!

Sunday afternoon was much better. She walked 10 laps around the unit!! She is getting back to where she was. Her fevers have not been as high at night as they were. Well I hate to cut this short but I'm typing this from my phone because Amelia wanted me next to her and the computer is too far away from her!
Oh counts for today is:
WBC 6.6
ANC 4.2
Still good!
Blessings,
Kelly

Day + 21 Friday...

We've been in this room now for 4 weeks! Yesterday was a good day for her. We had visitors from home yesterday!! It was so nice to have someone from home visit us. They happen to be here on vacation and stopped in to see Mz Mimi, it was her former bus driver, Mrs. Cindy and her husband Mr. Sammy is Marshall's current bus driver!!I didn't think about it but I should have taken pictures. Any way before they got here Mimi had to go down and do another CT scan of the lungs. Which showed great improvement with the fluid around the lungs but there is still the spots on there, still waiting to hear anything on them, hopefully when the doctors come back around and see us they will know a little something. She is till having fevers mostly at night now so that is some what of an improvement. When she got back in her room yesterday PT came to see her and she road the trike around for the PT and then did some basic stuff to wake up those muscles and joints. Then she sat up in her room on the sofa and visited with her company then when they left she stayed on the sofa and watched Now and Then. Then she had to take some meds and after her meds were done she was able to be unhooked from the pole and she went down to the gift shop and did some shopping! Woo Hoo for her.
My dad stayed with her last night and I went for a good night sleep at the RMH! I got up early to be back at the hospital cause today is day +21 and that means a bone marrow biopsy to see how much of her donor cells are in there working and doing it's job! We pray for 100% but know that at 21 days that is not likely, but this is the crucial one to see if the transplant is taking! Meaning is this her on marrow or all the donors working...this is where we want to see just the donors in there working.
She did great for the biopsy, it was done in peds sedation and though I usually don't wanna be in there with them doing it this time they just kind of started with me right there...I had to look away..it just kinda makes me sick to my tummy.
When we got back to the room the doctors stopped by doing their normal rounds and said that her CT scan from yesterday which was read by the radiologist looks all clear. So the spots on the lungs may just have been some fluid starting in there! yay we hope and pray they continue that way and she continues to heal in all directions. Right now there are a few thing we need to work on before we can talk about being discharged, one is switching all meds to oral meds, second we need to be eating and drinking a little and most importantly we need to be fever free!! That is our biggest hold up right now is the pesky fevers and no one know why or can figure them out...they just keep saying it's normal around here!! Just a bummer! Her counts for today with out the GCSF were really good...
6/16 (Thursday counts)
WBC 5.0
ANC 3.9
HGB 9.1
platelets 14

6/17 (Friday Counts)
WBC 5.8
ANC 4.5
HGB 9.2
platelets 36

Hope you all have a wonderful weekend. Blessings.
Forever in His hands,
Kelly

Thought for the day:
Life is like a game of cards. The hand that is dealt you represents determinism; the way you play it is free will.
Jawaharal Nehru

Amelia riding her bike

Day +19

Much of the same here, counts were 4.0 WBC and ANC is 3.2. She continues to have fever off and on. How ever I am proud to say that she just keep trudging right along. This morning they delivered a trike into her room and well she didn't let us down! Two laps around the unit on that thing...she was very tired after the loops around that is harder work than walking. Around 2:15 we had a play date in the play room with Mz. Chloe! (ding dong me brought the camera in and forgot to take a picture!!) Oh well maybe next time, the girls played with playdoh. Later in the evening she went for another short bike ride and then a stroll and we wound up meeting Chloe in the hall and Madalyna another FA BMTer on the floor!

Well that's about all for now...if there are any changes I'll let you know. For now thank you for your continued prayers and support it truly means a lot to us!!
Blessings,
~ Kelly


Verse for today:
“I call on the Lord in my distress, and He answers me.
Psalm 120:1


thought for today:

Prayer has the power to change mountains into highways.
Wesley L Duewel

Amelia riding the trike around!!

Day +18

Things here are going fairly well. Counts continue to improve daily, Today's counts: WBC 2.7 and the ANC is 2.4. She needed platelets this morning because they were at 9. She will probably need red cells later this week as her hemoglobin is at 9.7, but she hasn't had red cells in quite a while. She is doing better and better every day. Let's see so far some improvements are, Counts of course, her mouth is slowly getting better, her weight is better under control, they have upped the lasix, it's still 4xs a day, but a higher dose. Her weight went from 32.2 kilo's down to 30.7...her breathing has improved too! She is doing the spiromentry thingy 3 xs a day. She was only able to get it up to 500, which is the lowest on there and now she is getting it up to 1000!! We talked to the BMT fellow this afternoon and they said they were very impressed with Amelia's progress as far as the walking. She walked the hallways 3 times yesterday, they say that one trip around the hall is 1 10th of a mile. Yesterday she walked it 3xs, two in a row and then one later that night. Today she had a busy day she had a shower at 1:00 and then a dressing change then we got her out and walked the hall and then to the playroom where she sat till almost 4. Then we made our way back to the room where she was ready to crawl into bed, which she did and then....the dang pesky fever came creeping back. That is our biggest fight right now the darn fevers, every single day! We will go back down on maybe Friday to do another CT scan to see how the fluid in the lungs are.
Well I am being interrupted by Nater to play on the computer so I guess I better run....
Blessings!

Mimi walked the hall way today 3 times!!! Walked no wheel chair!!

Day +16

There are so many ups and downs here!

Yesterday was an up day for her. This morning when I got here she was still on that up side. She was making me wrap her in her blanket on the side of her bed and said look I'm big chief Indian...and she would just giggle away. One of those good ole deep belly laughs!

She sat up on the side of her bed for a good while and I cut her nails they were super long and aggravating her. Earlier in the morning she had been wheeled down with my dad to do a CT scan of her sinuses and her chest. Well this is where the low comes in! The sinus are clear thankfully BUT...there is fluid around the lungs and a few spots on the lungs..nothing big they said. They have upped her lasix to 6 times a day to help get some of this fluid off of her and added yet another antibiotic. She looks better than she did yesterday and she said she feels better than yesterday. On another upside is her counts they went up to 1.7 for her white blood cells and her ANC is 1.3, tomorrow if the count is still about 500 (anc) then we are walking the halls...getting her out of this room!! They said that once she is up and moving a bit more that too will help with the fluid in her lungs. She got back in her bed around 2:45 or so and she has been there for a while but she has been awake and the bed is at an upright position. I told her she could rest today but I am going to push her tomorrow to walk as much as she can. We will also find a wheel chair or a wagon, so she can take a ride out in the hallway.

this picture below is of her playing Wii yesterday.
For now we need to storm the heavens for this fluid and spots on her lungs to go away along with these high fevers!!!!

Thanks for keeping her in your prayers they mean so much to us to have all of your support!

Blessings....

Day + 15

She had a rough night last night. All that yucky stuff that is dripping down her and stuffing off got the best of her and she threw it all up then she kind of panicked and couldn't breath. Thankfully my dad was there and calmed her down. Her O2 stats were a little low while she was/ is sleeping or laying down so, they put a little oxygen on her while she is sleeping. Plus she is so swollen, I took a picture of her, I'll try to put it up, I told her she reminds me of Andrew Zimmern.



Her counts are up to 0.7 and her ANC is 600 if it stay up for 3 days in a row she will get to go outside and roam the halls with her mask on!
While we were visiting her today, I say visiting because she wanted her papaw to stay not me, any way she got up and played the Wii that is in her room for almost an hour and a half to two hours!! I took a video of it I will try to upload it from my phone!
She is moving right along, she is still having high fevers, but they day that is to be expected as the body is fighting the new cells coming in, but thankfully and prayerfully those cells keep fighting their way through!
Thanks again for the continued prayers, they are working!
Blessings,

Day +14

Greetings from room 4122....
We still continue to see small and steady improvements. Today we are at 0.4 on the white cells. First thing this morning we had a visitor..Our main FA doctor...Dr Wagner, just stopping in for a visit to see how things are going. We told him we were at 0.4 and he said yeah!! He also said that that is great and that her counts would be a bit slower growing in do to the mishap with the cells, but he was and is beyond pleased that they are indeed GROWING!! She continues with the fevers some as high as 104, there is no explanation for those as there usually isn't. Cultures are still negative which is a plus in our favor. Her blood pressure is OK, as she hasn't been taking the oral amlodapen for it...I worry about her not taking the ursadial, that is for her gallbladder and liver. So far though she hasn't had much complaints on the belly other than nausea...let's pray that continues that way. Dr. Wagner is pleased and defiantly wants her to beat Marshall out of the hospital...umm yeah so would we, we would love to see her out in about two weeks. That would be a dream!!!
Please continue to keep Chloe in your prayers..she is doing pretty good, I know she was having some belly pain and we would like for you to pray that this goes away and that she is able to get out of this hospital soon!! It's funny how FA connects you so closely to people you have never met before!
Ty's visit came and went, way too quickly I might add. He will return some time in the late part of July with Marshall. They are coming up for Nathan's birthday and if Amelia is doing well we will probably have them fly home and take Nathan with them as school will be starting on Aug 8th for him and I really hate for him to miss a month or so of school. That will be so hard to be away from them all and not to be there to help him in those first days and weeks of a new school, thankfully it will still have all the same students with him!
Thanks in advance for your continued support and prayers they do mean a lot to us.
Hope you all have a very blessed day!
Blessings,

Kelly

Some Random Pictures

Here are a few random pictures Some are from the Zoo and a few are of Mimi on her birthday later in the afternoon when she was feeling a bit better!

Nate at the Grizzly exhibit


The big huge mosquito


Our sunset...




The sun setting on Mimi's birthday...see the metro dome in the back ground (the one the roof collapsed on)

Sun set at the zoo

My girl on her birthday smiling!



Blessings,

Day +13

Houston.....we have take off........WBC 0.3!!
Keep growing cells! We should be getting a chest x-ray sometime today. Hoping and praying that it's all clear and that her shoulder is just something muscular! The main complaint right now is the mouth, tongue and throat. Hopefully and with lots of prayers those will heal sometime this week or the early part if next!
Keep those prayers coming they are working !

June 7th Day +11

June 7th 2000....11 years ago we were in another hospital with Amelia, as a new born baby. Yep today is her 11th birthday. As one of her favorite nurse assistants came in and wished her a happy birthday she said it's the worst birthday ever...unfortunatly I would definatly have to agree.
She did sleep a little better through the night, she really needed. She has kind of been fighting her sleep. I tried to explain to her that her body heals as she is sleeping. I know that she is in some pain too, but I really would like them to start to wean her off of the dilaudid...that is some strong stuff and I don't like the side effects. Marshall became addicted to that stuff and it was pretty horrid to watch him come off of it. She has been having presistant fever for about a week and we want them to go away!! She is still having the mouth sores and tummy aches and in her throat too.
We were hoping that we would see an improvment in the white blood count, but again today it is 0.1, again we are still early, as they tell you not to expect anything till between day +14 - +21. One could hope though can't we! She has gained in her weight which I am hoping we can get it down soon.
Right now we just ask for prayers for her mouth and tummy to heal and these sores to improve quicly...I think once we get her over that hurdle she will start to see more improvement daily. She is a tough cookie and of course for those cells to GROW!!

To Amelia,
My sweet little girl, your are a true blessing in my life and I love you! I know that this is not a birthday that anyone wants to have and I promise next year on your birthday we will have the biggest and longest celebration, starting that celebration on your re-birthday of May 27th an almost two week celebration, but it and you are so worth it!!!! I LOVE YOU. Mommy.

Blessings everyone! Believing in Him and having FAITH....
F fantastic
A adventure
I in
T trusting
H Him


Kelly

Quick update

Heading to bed praying for a better night and even better day tomorrow. She has been up all day and all last night. Weaning her off the Dilaudid, she has been having weird dreams and the shakes and excessive emotions...things that are just not her! Tomorrow is day +11 and today we had a white cell count of 0.1 not the usual < 0.1, so if it is at 0.2 or higher that means we have cell growth!!

Blessings,
Kelly

Went back to sleep around 4:30.....back up around 6 or so with a high fever, the shakes and screaming in pain, from all things her shoulder!! I dozed off and on from 6:30 till about 7:45. She has been moaning in pain all morning!! She just laid her head back and I hear her snoring a bit. I pray she can get some sleep, but it's only a matter of time before she is up again to potty, cause they are now giving her lasix 3 times a day because her weight is up.
I'll try to update you through out the day!!

It's 3am we've chased down the umpteenth itch and she is pulling yucky stuff off her tounge. "mom put the lights on" so I do. The sees in her mouth are bleeding, poor baby is crying and apologizing for being so mean to me. She says this is her payback for being so mean and hateful. I told her in no way is ant of this her "payback". The nurse just went to get her some benadryl. We've had maybe 3 hours of sleep. She is emotional and looks at me and ask what's wrong with me I can't control anything. I keep telling here it's OK, too different things. Tonight she looks at me and says why do you say it's OK? It's not OK!! Well what do you want me to say??

What can I say? I just want to run in the bathroom and scream and cry. Life sometimes just isn't fair and I gave no idea of how to help.....

Please pray for better days ahead...and a little less hard headed kid!

Day +9

Much of the same here, pain, fevers and more pain. Now on top of everything else she has a pulled muscle in her left shoulder, it's been there for a little while, probably since last Monday when PT came in to so some work with her and they made her lift a ball over her head! Poor baby, I just want her to have an awesome day on Tuesday as it is her birthday! This is just no place anyone should have to be on their birthday!! She is still doing well from a transplant point of view. I know it is still early for counts, but I am praying that we will see something soon....Maybe that would be an awesome birthday present!!
On an up note for today she started taking sips of milk and then she ate tiny bit of chocolate pudding, it wasn't a lot that she drank or ate but that is a big improvement that she is wanting to even try at this point. I went out and bought her some chocolate syrup so she could have some chocolate milk. She doesn't like the chocolate milk that they have here as it is made with low fat/ no fat milk. She likes it with 100% whole milk, actually there is no where around here that you can buy whole milk chocolate milk!So we will make it for her when ever she is ready for it.
I'll try to let you know how tomorrow goes. Thanks again for your prayers and warm thoughts!!
Blessings,

Kelly

Prayer Warriors....

I know I keep asking this, but here are a few specifics. One she keeps having high fevers, I know that most kids on the BMT unit do, but I still don't like it, two she is puffy and has gained some fluid weight. She is getting weak from staying in bed. They have her on dilaudid and they have to monitor her pulse ox and thankful it has been running between 94 - 98% and finally the mouth sores and belly pain. I pray that all of these things start to heal SOON! I want to also ask for prayers for another little girl the same age as Mimi who is going through transplant to here with FA! She is about 3 days ahead of Mimi so please say a prayer for her too. Thank you!
Blessings!
Kelly

Day +8

Greetings,

Today is day +8 and she is feeling just a tiny bit better. Her hair has fallen out and she isn't using the pain pump quite as much as she was. She still has the mouth sores, they just are not quite as bad as they were. Her checks look like a chipmunk still. She still can't eat anything, she is still wanting too, which is a good sign. Still no wbc count or ANC count, but it is still real early...we are hoping and praying that for her birthday on Tuesday we get a really great present!!! The doctors are very pleased with her progress. Her little spit fire and feisty-ness is coming out every now and again, which I just love! She gives us hell every now and again, but that's OK with me!!

Poor Nate told me the other day I sure wish we had the old Mimi back! He is missing his sister and playing with her and spending time with her. I figure if things keep going right as planned and we have no more bumps in the road, we may only have about 2 and half weeks left in the hospital. Which would be so wonderful to have her out of here, but first once the ANC count reaches 500 for three days she get to go fro a stroll around the unit with her mask on. I hope she gets to do that soon, because she is getting a little week and unsteady, I stand with her on the side of her bed and some squats with her every now and then.

Her dad came in today and she and Nate are both very happy to see him!

Blessings,

Kelly

Day +8 each day is a little better!!

Pray for comfort...day +6

Please pray for comfort for her and for these awful painful mouth sores to go away soon! It is breaking my heart today and can't keep my eyes dry while she us begging me "mommy please make it stop hurting"!! I can't help but feel like this is all my fault and deep down she us blaming me for all this that is going on. I know that this will pass and she WILL get better and that it takes time. It is still just so dang hard to watch her suffer and not be able to help her!! They have upped her dose of pain meds and her attarax too maybe the two of them will help her sleep through most of the next days!!! I just want her to get over these next few days , poor baby looks like a chipmunk her poor Little checks are so swollen and sore from the blisters, her tummy is full of the blisters too and she complains about that too. Today I just can't stop the tears from flowing and I hate her seeing me like this. I am the one she relies on. I have to be strong for her!!

Day +4 and Day +5

These past two days have been rough on her. Please pray for her comfort and pray for these mouth sores to go away quickly. Her two major complaints have been her mouth and her belly. Then it is the itching from the pain meds that she is on, but the pain meds she needs for the mouth sores and the belly pain. It's a damn is you do and damn if you don't game here. I know this week will be her roughest, but its so dang hard to watch another child go through all of this pain. I know the big picture is better than all of this.
I'm going to watch our nightly ritual of "The Nanny" so please keep her in your prayers for comfort. I will try to update more tomorrow! We are also praying for those cells to grow, grow and GROW!!!
Blessings,

Kelly