Notes from the Dungeons

Caps For Kids

2012-01-17T20:19:00.008-06:00

OK so most of you have heard of Caps For Kids. Well if you haven't, you can read about it here Caps For Kids. What most of us know is that our kids pay a $1 to wear their favorite hat to school on a designated day, which is true. They also look for kids with terminal illnesses to honor with a signed cap from some one famous. Well Miss Amelia was nominated and chosen to be honored with a cap of her choice. Her first choice was Selena Gomez, but unfortunately they didn't have one by her, but they said they would work on getting her one signed by her. Since this was on a Monday that she chose and she was getting it on Thursday she went with a second choice that they had in stock. Here she is at the school board meeting waiting.

Here are the people from Caps For Kids! Super nice too I might add.

This is her principle presenting her hat to her!

and here is her cap! She watches/watched NCIS a lot with her papaw, especially during transplant and this is her absolute favorite character on the show.......

Pauley Perrette!!
She was super excited about it and has been showing off her hat all over! SHE LOVES IT!!

We had clinic on Monday and everything is still moving in the right direction. Counts are still doing awesome and we have one more week till we are completely off the CSA!! She should finish it up on Jan 26th (her daddy's Birthday). Then in a month after that we will test her immunity counts again and if they are good enough she will go back to school in March for half days.

Thanks for the Prayers...

2012-01-11T21:04:00.003-06:00

Thanks every one for the prayers! Amelia is doing much better and thankfully it only lasted a day and a half. She did not have to be put in the hospital. We went to the clinic and saw the doctor and if she wasn't doing better by 5 she was going to the hospital. She had a clot that was stuck in the urethra tube that she was able to finally pass it and pee all on her own. Thankfully it passed and we went home that evening drinking a water bottle full of water every hour and half till bed time. Friday we went back for an ultrasound of the bladder and thankfully it was all clear. I am praying that it will stay that way for ever and that this stupid stuff NEVER rears it's ugly head again! Her counts are great, her hemoglobin is 12.7 and platelets are 138 and white cells were in the 4 point something. We will return to clinic on Jan 16th and she only has two weeks left to go on her immune suppressing medicine and then we will check to see how her immune system is doing and if it is better she will return to school for half days in the mornings. I think she is looking forward to doing this!
Again thanks so much for your prayers! She is a very tough cookie and keeps trucking a long!
Blessings,
Kelly

Welcome to the flipping New Year

2012-01-05T13:46:00.002-06:00

Prayers, please! We are headed to the hospital with Amelia!! After 3 and half months with no blood, guess what reared it's ugly head again!!! Yep she is having blood in her urine and clots, we are all devastated. Please say a prayer or two for her! No body knows why this is happening! All I can do is beg for prayers!!!

A long over due update!!

2011-12-23T23:06:00.013-06:00

Greetings,
So sorry that it has been so long since my last update! it has been non stop with doctors and everyday normal stuff! Amelia is doing AWESOME! At the beginning of December she had a really bad cough and nasty nose and stuff that had us rushing to the hemoc's office. Which thankfully did not bring any fever or a stay at the hospital, just a bad cold virus that was doing its best on her very weakened immune system. It took her a very long time to get over it, but her white cells and ANC count took a bit of a hit from the virus so we are keeping her away from crowds and such for the time being, meaning the plans to attend Christmas eve church services have been nixed as we are more than sure that it will be extremely crowded.
About a week after we went to the doctor she got to be an extra in a movie being filmed right here in New Orleans. The scene was at a fake children's hospital in New York. Amelia was a "patient" the stars of this film are: Mark Wahlberg, Russell Crowe and Catherine Zeta-Jones! The scene we were in was with Mark and Catherine Zeta-Jones, both of which were super nice and took time between takes to come over and talk with Amelia! (pictures to follow)
Ty had been home building back up his hemoglobin and iron level and waiting to have his scopes, which were finally done on the 9th of Dec. He has acid re-flux and a hiatal hernia, which we already knew from 3 years prior to this. The doctor said that there are some eroded area's in there and that these two area's can be susceptible to bleeding as the stress increases. Of course we didn't have much stress over the past 8 months now did we! But I am happy to say that after 6 weeks he finally returned to work on Monday.

This past Monday, we got to go to our states capitol for a Make a Wish function. We had lunch, met with Santa and the Governor too.(pictures below) We have been busy. Now we are ready for Christmas and the arrival of Jolly ole Saint Nick!
So as I am sure it will be a while before I get to update again, we just want to wish you all a very VERY Merry Christmas and a happy Healthy New Year. We are praying for a much less stressful 2012! I found a picture of myself taken a year ago and when I look at it and the ones taken here recently I can see how I have aged about 10 years in just one year!!

Here are the kids at my mom and dad's house making Italian seed cookies that we make every year for Santa. The kids love it, I am sad to say though we made them a little too early this year as there are no cookies left for Santa looks like we will be buying some store bought ones to leave for him, I better remember to do that tomorrow while we are out or he will be getting some celery instead of cookies!!

Here are the pictures of Amelia and Catherine Zeta-Jones!! Amelia just fell in love with her, she is so SUPER nice!!

We went to our state capitol with a Make A Wish function and we all had a blast!

Amelia and Nathan in front of the Christmas tree at the state capitol!

Nathan sitting on the floor....

Amelia and Nate with the Governor

The kids and I with Santa and the Louisiana Governor Bobby Jindal.
I want to Thank all of you who still stop by to check in on us and who are still praying for us too! It means a lot to us!

Merry Christmas,

Kelly

2011-12-21T16:01:00.000-06:00

up date coming soon I promise!!

New Picture....

2011-11-24T20:24:00.001-06:00

I had to change it! the look on the dogs face says it all. A typical day in our house!!

Thankfullness....

2011-11-22T20:03:00.009-06:00

I know I have been MIA, but I felt since Thanksgiving is coming up I should do an update. We went to Minneapolis, last Wed thru Friday. It was a great trip. Amelia will not be officially 6 months till this Sunday the 27th. We had a great visit with Dr Wagner, he was very pleased with how well she looks and how well she has been doing. We did counts and they were about the same as they have been. Holding steady and I'll take that. She went to peds sedation and had her bone marrow biopsy and line removed. She did great with both of them. She was a bit nervous about the line coming out. I told her it would be a cinch, but after 6 months you become attached to it. Her biopsy went so smooth, one stick and a very small bandage and hardly any blood, much different compared to the last two that she had. She said I want that NP next time to do it! Line came out and she was fine with it being gone. I know though when we go to clinic next week she is going to hate getting stuck for her CBC and other counts.

While we were there we were able to catch up with Chloe who's BMT was just 3 days before Amelia's. We also got to catch up with Lisa, Sam's mom. Sam is undergoing his 2nd transplant. We are praying that this is the trick that Sammy needs!

Ty had his iron infusion on Friday, this time it is taking longer to kick in. He will go back to the doctor on Friday to see if he can be released to go back to work. Tomorrow we will be going to the cardiologist for the Echo. This is the cardiologist that saw Amelia when she was born and for about 3-4 years after. He will do the Echo right there in his office and we will get the results right then and there. I feel very confident that every thing will be fine but I need to be 100% that there are no deformities in there. I know we will probably never know why his heart rate decided to soar that day.

So even though we have a lot going on we have a lot to be thankful for. Among those a few are, God, Family, health and Love! May you all have a wonderfully blessed Thanksgiving!!
Blessings,
Kelly and family

Below are a few pictures from the last few weeks...
Nate in Action!

Chico...

Amelia and her best friend.....

and one of my favorites....

When it rains it does more than pour!!

2011-11-12T13:59:00.007-06:00

Where to start?? Let's see Amelia first and foremost is doing awesome!! That is some of the greatest news of all. We will be flying back to Minneapolis on Wednesday and seeing Dr Wagner on Thursday and then flying back home on Friday.

This past week has been hectic to say the least, but the week before this week we started it with Marshall needing a CT scan of his head, due to a concussion. Thankfully all was well but he had a serious headache and of course we were in the ER most of the night cause it happened at like 5:30. Then over the weekend we went to Biloxi for my cousins weeding, you will see some pictures below. Ty (dad and my hubby) had been complaining of being tired and short of breath a bit and headaches, at first I just thought OK we are both out of shape and need to get back into shape. Didn't think anymore of it till he went to give blood at the blood mobile on Sunday. They did a finger stick and told him he couldn't give because his counts weren't high enough. So I called on Monday morning to set him up an appointment with our general doctor to have the counts checked. I couldn't get him in until Thursday morning. So we get up and get ready to go Thursday morning and my cell phone rings as we are going out the driveway. It's Nathan's school, I thought this is going to be good cause in the 4 years that Nathan has been in school I have never once gotten a call from the schools or him. So the nurse said I have Nathan, who NEVER visits me here in my office and well he was complaining of his heart hurting so I took his heart rate and it was a little elevated at 135, so I made him sit still for about 10 minutes and we took it again and it was still high at 135.
Can you say freak out?? We rushed to the school and on the way I called the pediatrician's office to see what to do and they said just bring him straight in. Of course by the time we get to him at school he had burped and felt better. But a burp will not make your heart rate go up that high! His normal heart rate range is between 60 and 90! Thankfully the two doctors office were only a few miles away from each other. I dropped off Ty and headed to the pediatricians office. Of course they didn't know what it was or why so they ordered an EKG and a 24 hour halter monitor. Ty of course didn't find any thing out either, they drew some blood and so on. Friday morning the doctor called and said he wanted him off of work for the next 7-10 days cause there is no way he can function adequately. Nate had to go back to the doctor because he was complaining about not being able to pee...so back to the doctor we went and he had to get some cream, cause there was some irritation there. As for my hubby we have no idea why his hemoglobin and iron level have dropped so low I think it was like 8 well a normal HGB level for a male is 15, that's what Nathan's was when they took his on Thursday.
We found out that the EKG was normal, they haven't read the monitor. We go back to the pediatrician's on Tuesday. I think though, for my own piece of mind I will be taking him to a cardiologist just to make sure and be absolutely sure that there is nothing wrong. Then Marshall comes home and he is complaining about it hurting when he pees and that he is going frequently. So I'm sure I'll be back at the Dr's with him on Monday. The doctor for Ty is suppose to be setting him up an appointment to get an iron infusion. I am hoping that it will be Tuesday. So he will have some energy while I am gone cause he will have to take care of the other kids while we are gone.
I told them I am not going to make it to my 50th birthday. lol

..here are a few pictures of her from last weekend...

This is Nate and Mimi handing out the programs.

Here is Amelia and her favorite guy in the world! Her Papaw (my dad)

here she is all alone and full of smiles!!

Here is Papaw and 2 of his 4 grand kids...

Prayers and small update

2011-11-03T22:54:00.003-05:00

I know it's been a while since I have updated. Things have been going fairly well. We went to the doctor on Monday and Amelia's counts were all pretty good. She looks great and is back to her normal pre-transplant self. We all went trick or treating. Amelia, Marshall and I hung back a bit from any crowds. She didn't last long either, she still needs to build up stamina, as far as activity.
On Tuesday Marshall had the first pert of his GED testing, something we didn't think was going to be possible with all the trauma his brain has had. After his test he went back to school for wrestling practice.... Yes I wrote it correctly wrestling!! (no we are not happy with that choice, but he wants to be a part of a team) Well we got a call from the coach about 20 minutes before practice was over. Marshall had a concussion!! So Tuesday found us at the ER waiting to get a CT scan and blood work done on him. Thankfully he was and is fine. We have to see a concussion special doctor before he can return to Wrestling.
Nate was also home on Tuesday as he woke up coughing with a cough that sounded like a seal barking! Went to the doctor with him and it's mainly sinuses, try and keep him away from Amelia, that's what the doctor said...hahaha easier said than done!
Thus far she is not showing any signs of a cold or cough, but what brings me here tonight to ask for prayer request is.....well that pesky bladder problem!!!
She has been off all fluids for like 3 weeks or so now,we haven't seen ANY BLOOD or pink in her urine in well over a month. BUT, she went to the potty tonight and there was a teeny tiny clot with some slight pink blood! So I'm here to ask that you say a prayer for her that this is just a one time tiny thing and that we won't see any more. She us so close to her 6 month check up...like a little less than 2 weeks and we are heading back for them to do another Bone marrow biopsy and take her line out. Please help us pray this bladder problem AWAY!!!
Please and thank you for continuing to keep us in your prayers and for checking on us. I have lots of pictures I want to share and hood to get to that this Sunday.
Right now, though I am updating from mu phone and my finger hurts. Again thanks for the prayers, that was so not what she wanted to see!!!
Blessings,
Kelly

Oh wait I might be able to upload some of the photos I have on my phone.... Let's see....

Happiness!!

2011-10-13T21:16:00.007-05:00

Just thought I would give a quick little update and some pictures so you can see how well Miss Amelia is doing!!! We had clinic on Tuesday and things are still doing great. Her counts still continue to go up, we didn't get all of them or a definite figure, we will get the print out again next Tuesday. We were in the middle of dressing change, which is always stressful, but thankful we have it down to once a week with the new dressings that they have here at home! If they would have had these in Minneapolis we so would have done them!! But anyway back to the counts, the doctor popped his head into the door and said guess whose counts are above 100 thousand? So we were happy to hear that her counts are above 100!!!
She unfortunately got poison ivy from Nathan. Nathan got it about 2 weeks ago went to the doctor and got a shot and some medicine for it...his cleared up quickly, but Amelia's is taking it's time getting better. I guess that is just her slow immune system.
She is also off all of her fluids. The only thing she is getting through her line is her caspofungin. Knock on wood we are praying that pesky bladder thing is gone for good!!

Here are a few pictures:
This one is from right before transplant at this time her hemaglobin was about 5, becasue by the time we got to Minneapolis her HGB was down to 4.7!!

The one below is of her just about two weeks ago! Her hair is coming in so thick and fast! Also notice the beautiful pink lips! The picture above she was so pale. She looks so healthy today!

Here are a few from what we did this past weekend!

She found this Giraffe and we had to stop!

Nate was in his glory on the USS Alabama...

Mimi was not...lol

Thanks again for all the prayers they are appreciated!!

Blessings to all,

Kelly

Thank you!!

2011-10-04T12:30:00.003-05:00

Thank you, Thank you....Thank. You.
Her chest x-ray was clear, I'm going to keep praying that it is just muscular!! She got her flu shot. Her counts are awesome!! Platelets 97!!! White blood is 4.4 and hemoglobin is 10.7!! She is looking great and feeling great. I won't breathe easy until I am 100% sure her shoulder is muscular!! But for now we will take it!
Blessings All!
~ Kelly

Prayers please!!

2011-10-04T08:26:00.002-05:00

We are on our way to a regular clinic appointment at our local clinic. I am a little worried. Please say a prayer for Amelia today!! She has a little bit of a cough, which started a few days ago. Last night she came and told me that her shoulder was hurting really bad. My stomach was immediate knots. Please pray she does not have pneumonia or anything worse, please! I've been praying all night. She has been doing so awesome. I packed some clothes just in case. I hope I don't need them!! I'll keep you posted.

Blessings,
Kelly

Day +119

2011-09-23T12:36:00.002-05:00

I found this and am posting it even though I don't have a child with cancer, but I do have a child with a terminal illness.

"Shoes"
I am wearing a pair of shoes. They are ugly shoes. Uncomfortable shoes. Each day I wear them, and each day I wish I had another pair. Some days my shoes hurt so bad that I do not think I can take another step. Yet, I continue to wear them.

I get funny looks wearing these shoes. I can tell in others eyes that they are glad they are my shoes and not theirs. They never talk about my shoes.

... To learn how awful my shoes are might make them uncomfortable. To truly understand these shoes you must walk in them. But, once you put them on, you can never take them off.

I now realize that I am not the only one who wears these shoes. There are many pairs in this world. Some women ache daily as they try and walk in them. Some have learned how to walk in them so they don't hurt quite as much. Some have worn the shoes so long that days will go by before they think about how much they hurt.

No woman deserves to wear these shoes. Yet, because of these shoes I am a stronger woman. These shoes have given me the strength to face anything. They have made me who I am.

I am a woman who has a child with cancer. I will forever walk in these shoes.

- Author unknown

2011-09-20T23:16:00.002-05:00

I'm so sorry that I haven't been able to do a proper update, my laptop bit the dust so I am updating from my phone. We have been home for a little over a week now. Things have been doing good. We went to our home clinic last Tuesday and this Tuesday. Her counts are doing really well! I don't know the exact counts cause I don't get z print out of them here. Last week her platelets were 71 that's up from 57 when we saw the Dr on Thursday the 7th in Minneapolis. HGB was up to 10.? Up from 9.7 too. This week when we went to clinic he said they were same as last week. We have been going non stop! I think we were actually home this past weekend and got caught up on the laundry.....but again it is all piled up again.

Well I wanted to reassure everyone that we are well and we didn't fall off the face of the Earth. Busy, busy, busy! Hopefully I will getto do a proper up date from a real computer!! I will work on that tomorrow or Thursday!!

Blessings,
~ Kelly

On the road!!

2011-09-08T22:17:00.002-05:00

Greetings from the road, we are about 122 miles north of St Louis. We are excited! Anelia is comfy in her seat watching Justin Beiber. She is hooked up to her nightly fluids,so we told her to holler if she needs to tinkle. Nathan already called us earlier to see where we were and to make sure we were driving straight through.
There are many tears of joy being shed. I am so grateful to Dr Wagner for all that he has done in his hard work to give my children and otherchildren with FA a longer, healthier life. I told him there will never be enough or the right words to thank him for my children. Next to my children he is also my hero!! Such a talented, caring and amazing man!
We will start a new journey when we gethome and get settled into a new home clinic. Dr Wagner said once a week to clinic, we are thrilled to hear that. We are praying that she won't need blood products any more, but know that until the HC goes completely away a transfusion may be in the future. Today's counts were really good too WBC was I think 3.6 hbg 9.7and platelets on her own were 57!! She is 100% donor with 70-80% cellularity. Her CD 4 is only 30, which is normal for this stage in BMT, but that means her immune system is still low and she must still wear her mask and avoid crowds and crowded areas, and any one who is sick in any way!! She will get a flu shot as soon as they are available. She will not be re vaccinated till June.
We already have our follow up appointment fir her 6 month check up scheduled for Nov 17th.
Thank you all for your support and prayers and thank you in advance for many more as we embark on a new journey and chapter of life after BMT! I'll try to post from home soon!!!
Blessings,
~ Kelly

Day + 103

2011-09-07T17:07:00.002-05:00

Tomorrow morning we have our last clinic visit with our wonderful Dr Wagner! We have to be to clinic for 8:30 for labs and then at 9 we see the dr. We will then head back to the RMH to wait for our supplies of fluids for Ameliaand then we are hitting the road for about a 20 hour ride back to home sweet home! Please pray for us as we travel the straight through ride.

We are ready to be home, but nervous at the same time. There are things that we will miss and thinks we won't! Life will once again change again as we venture into more uncharted territory. She is not out of the woods by any means and will still be required to wear her mask, mostly every where she goes. Our house will be her one safe haven for her so we have asked people respect our request for no visitors right away till we get things settle. She still has no immune system and will need to get re vaccinated.
I will let everyone know tomorrow from the road.
Blessings,
~Kelly

Amelia standing next to Lake Superior!

2011-09-04T09:16:00.000-05:00

A big snow-globe for her collection!!

2011-09-04T09:15:00.001-05:00

Happy day 100!!

2011-09-04T09:10:00.004-05:00

Today is day 100!! 4 more full days till we turn into birds and fly south for the winter!!! Please say a prayer that every thing goes smooth and we are on our way by Thursday afternoon!!!

Yesterday to beat the boredom we took a ride to Duluth, MN. Which is about two and half hours north of the twin cities.... Of course it took us just a bit longer due to construction, but still it was a beautiful town. We stopped and had a late lunch and got outto see Lake Superior. Of course Amelia wanted to do more , but I just can't get her to understand she is still in a very fragile state.....even though she fells the best she ever has!!!
So today it's back to packing and praying. Thanks so much everyone for your continued support and prayers we will need them!
Blessings,
Kelly

Day + 97

2011-09-01T12:44:00.002-05:00

We had clinic on Monday and Thursday. We have had busy days off trying to fill the boring spots with outings and riding around the area. Amelia said we are practicing for the ride home. She had been doing pretty well. She hasn't had any blood transfusions in a while the last infusion was of platelets and that was on the 22nd of August. Her counts have been doing really well. On last Thursday her counts were 52, we returned to clinic on Friday and they were 51 so we didn't get a transfusion, we went in on Monday and her platelets were 46, still we opted to not do platelets to see what they are going to do on her own, well today her platelet count was 48!! We still didn't transfuse her we will watch her over the weekend and pray that the hemorrhagic Cystitis doesn't rear it's ugly head and drop her counts!! As for her red blood goes she hasn't had a transfusion for those in a longer amount of time Since the 19th of August. Her hgb has been 10.8-10.5 for quite a while now.
We are praying that we have a nice quiet weekend and time to pack and get ready to head home on the 8th!! please pray for this along with her! She is so ready to be home!!
I can't believe it has been 97 days since transplant. I can't wait till this is all but a memory and in our rear view window. I just want to get home and get back into a routine, my poor little Nater is missing his sister terribly, he maybe missing his momma too just a bit!

Well I will let you know what the weekend brings.
Blessings,
Kelly

The next Katy Perry

2011-08-27T16:18:00.001-05:00

2011-08-27T16:12:00.001-05:00

2011-08-25T21:48:00.000-05:00

2011-08-25T21:47:00.000-05:00

Day + 90!!!

2011-08-25T21:26:00.003-05:00

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!
Blessings,
~Kelly

Day + 88

2011-08-23T19:03:00.002-05:00

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 still...so 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!
Blessings,
~Kelly

Day +84

2011-08-19T16:48:00.002-05:00

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 too...as 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.
Blessings,
~Kelly

Day + 83

2011-08-18T12:15:00.002-05:00

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!!!

Day + 82

2011-08-17T22:12:00.002-05:00

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!
Blessings,
~ Kelly

Amelia Day + 81 out for a stroll

2011-08-16T17:30:00.001-05:00

Day + 77

2011-08-12T11:35:00.002-05:00

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!
Blessings,
~Kelly

Day +75

2011-08-10T21:45:00.002-05:00

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, Bumix....um 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!!
Blessings,
Kelly

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

2011-08-06T00:38:00.001-05:00

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???!!!!!!

~~~Kelly

Marshall's day +70 post..talk about Deja Vu !!

2011-08-06T00:33:00.000-05:00

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.

HE'S MY SON
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...........

~~~Kelly

Just to lighten the mood....

2011-08-05T19:03:00.003-05:00

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

PRICELESS....

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.....

PRICELESS

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....

2011-08-05T09:24:00.003-05:00

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!!!
Kelly

2011-08-04T10:51:00.002-05:00

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!!!

Day + 66

2011-08-02T14:42:00.003-05:00

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!!

Day + 64

2011-07-31T22:44:00.003-05:00

I know I probably sound like a broken record, but please say some prayers for Amelia! Her counts and all are doing good and we thought we were on the tail end if this dang hemorrhagic cystitis, but she started having big clots and just about every time she goes to the bathroom!! I know the doctor said this could happen but she is so disappointed. We have an early appointment at clinic tomorrow morning and she is worried she will need blood because of the heavy clots!! Please help us pray this all away! everything else is doing great. She gets stronger and stronger every day. She was climbing up on the jungle gym and then sliding down. She stays up all day long and does a lot of walking. I thank God everyday for the blessings He has bestowed on me and my family!
Blessings,
Kelly

Day + 60

2011-07-26T21:39:00.004-05:00

Some Pictures....

Amelia and her Giraffe AKA Elvis! lol

This is Monday night Go Carts....

This is Amelia coming down to ride the go carts!

Day + 59

2011-07-25T22:45:00.003-05:00

We went to clinic today, she's doing pretty good. Still having blood clots. Her counts for today were pretty good. We received red cells today her hemoglobin was 8.0 today. Her white cells were 7.4 platelets 47 and ANC was 4.4. They gave red cells because of the bleeding in the bladder.
This weekend, I had the opportunity to go to the U2 concert that was held a few blocks down at the U of M stadium. It was pretty cool till it started to rain, I took cover, I'm not a fan of being wet fully clothed. Sunday we went to church at the Basilica of St Mary, then took a ride out to Cabela's which is where she wanted to go. Dad and Marshall arrive sometime on Wednesday.
I have some pictures to upload tomorrow. For now I'm heading to bed for hopefully a few hours of sleep! I'll write more tomorrow, just wanted you all to know how she was doing!!
Thank you for your continued prayers.
Blessings,
~ Kelly

Day + 53

2011-07-19T21:46:00.002-05:00

We are still here trucking right along. We had clinic yesterday for counts and metabolic panel. Counts looked great! WBC were 8.0, ANC 4.8, platelets 36 and HGB 10.3. Her platelets are doing pretty good as she has not had a platelet transfusion in about two to two and half weeks. Her creatinine creeped up a bit to 1.30 it had been running in the normal range, but I think she kinda got a little dry. For some reason her IV TPN didn't run all night long, plus she had her lasix, that morning before clinic. So at clinic they ended up giving her some fluids and then we had to go in today to just check the creatinine and it was down to 1.00, which was better and we are hoping that by the time we go back on Thursday it will be back in the normal range!
We are still trying all kinds of things to see what we can get her to eat! She has been eating egg salad and vanilla Ice cream just a little of both though but at least it is a start!
She is still having a blood clot here and there some big some are small. They are really painful. The urine color looks much better, it was actually yellow! Never in my life did I ever think I would be praying for yellow pee!!! Not just once but twice!! The things you celebrate here in the transplant world!! We have the day off tomorrow from clinic and we will retun to clinic on Thursday, we will see Dr Wagner.

Please continue to pray for Amelia and her bladder and that these clots stop coming and that the bladder heals and that her eating gets better and better and last but not least that she remain fever free!!
Blessings,
~Kelly

hopefully soon I will get some pictures and get to put them up on here!

Day +50

2011-07-16T23:07:00.002-05:00

Day 50!! yeah we are half way there! I pray so! today was a good day, she did lots of walking and no napping! Still just nibbles to eat, praying she will get better at eating. Tomorrow she promised she will eat more. Also no blood clots, teeny tiny ones and when I just changed her pull....it was yellow!! No blood, I looked at her and asked maybe we could pray it to stay that way! She said that would be wonderful!
We have 50 more days left for sure in Minneapolis...praying it is not more! Well at least we are at the half way mark, We have clinic on Monday morning at 8:30 praying that her counts continue to climb and climb! Not sure how many days we will have off from clinic, but we will go back to clinic for sure on Thursday, we will see Dr Wagner that day. Well I am heading to bed if I can get Amelia there!! Night, Night!
Blessing,
Kelly

Day + 49

2011-07-15T21:33:00.002-05:00

We went to clinic this morning to check the hemoglobin, if it was 8 or above we wouldn't do anything for the weekend. Well her HGB came back at 7.9 so it was an infusion of red cells for her. That lasted all day!! That is pretty much how we spent the day, which it was a miserable rainy Friday. Tomorrow will be day + 50 which means we are half way there to going home. I pray things improve before then mainly this damn hemorrhagic cystitis!! Tonight at dinner she had to come upstairs because she had a blood clot and it wouldn't pass...thankfully it finally did and she has been laying down ever since.

Opps she just went to the potty and passed another one. Please pray that this gets better and that these big clots stop. They hurt her really badly!
Gotta run to help take care of her and hook up her nightly TPN....
I'll update more this weekend as I can.
Blessings,
~Kelly

Day +48

2011-07-14T22:26:00.003-05:00

Today we woke did our morning meds and unhooked from the TPN (IV nutrition, because she is still not eating) got dressed and headed out the door to be to clinic for about 9. We did our blood work and went into a room to see the doctor. She did a quick exam asked a bunch of questions and that was it. She said she would like us to come in really quick tomorrow for a CBC since they do not have clinic on weekends any more. She said she would go ahead and order some red cells just in case her hgb drops a bit, I think it was 8.2 and she just didn't want her to go until Monday morning if her hgb was going to drop. We were in and out of clinic in a flash today. Then we came back to the RMH to chaos, they were getting all new beds so all the old beds needed to be stripped and taken apart an the new ones had to be delivered and set up...
Amelia is doing fairly well, other than she doesn't want to eat very much. They are going to stop her lipids over the weekend (Fats and protein) to see if that will help her get hungry. She still hasn't found much that she likes to eat. I think tomorrow or Saturday we will go and get her a cheese burger from McDonald's with out Mustard and Ketchup, those burn her mouth. We tried Taco's from taco bell...I am at a loss at things to try. She did drink about 4 or 5 ounces of a caramel frappy this morning. Her counts look great: WBC 6.8 ANC (I think 5.?)HGB 8.2 and platelets were 33.
She still has hemorrhagic cystitis which has it's good days and bad days..some days she has a lot of clots and bleeding and some days she is not that bad. Please pray that this goes away soon!
Well I have to go and get her ready for bed, she is staying awake more and more each day, today she has been up since 8:30 this morning and I think she may have had about a half hour nap all day. She was in a great mood today giggling with us and making jokes!!! That's the way I love to see her!!
Thanks for checking in on us and keeping us in your daily prayers they do mean a lot to us!!
Blessings,
Kelly

Day + 47

2011-07-13T09:17:00.001-05:00

Yesterday we had a clinic appointment and were there all day. Her counts dropped a bit, but nothing to be alarmed about as that is part of transplant and when we go back on Thursday we pray that they will be up a bit higher (white cells anyway). She still has hemorrhagic cystitis. It also has good days and bad days. Poor thing has been passing some really big blood clots...like the size of quarters. Please pray that this hemorrhagic cystitis gets better soon! She hates to have to be walking around in a pull up but she still doesn't have much control over it and is on a lot of fluids.
We have the day of from clinic, so we are going to try and get her to eat something!! She ate a little bit the other day and yesterday nothing...:( hope she picks back up soon! Well going to run and try to make her some scrambled eggs...then she said later she would like to try a chicken quesadilla from Taco bell...
Thanks for keeping us in your prayers they are appreciated and very much needed.
Blessings,
Kelly

Amelia's new do....

2011-07-12T00:00:00.001-05:00

Day + 44

2011-07-10T22:55:00.001-05:00

Today started out as a gloomy, wet rainy Sunday morning...but that soon turned to Sunshine!! I got the word that we have been waiting for... She has been released from the hospital!!! We are at the Ronald McDonald House tonight as one happy family! Tomorrow we go to clinic. I hope to update more tomorrow... Today has been a very busy and stressed day.

Blessings,
Kelly

Sent from my iPhone

Day + 43

2011-07-09T07:44:00.001-05:00

Same ole same ole here, just wanted to check in and give a quick update. Amelia is doing pretty good, counts are doing great. She got another fever on Thursday at 3 am so that bought us another 48 hours in the hospital. She has them every other day. It's very frustrating and aggravating. Of course she gets disappointed. She has been doing great with her pills! She leaves every day around 3 pm for pass and we come back in at 8. I did my class for her IV nutrition and passed with flying colors, the nurse said I had a gift, lol I told her I was thinking of going back to school to be come a nurse!! I've had a good bit of training. Any way we don't know when we will leave the hospital for good if only the fevers would go away and stay there!!! I told Amelia let's aim for Halloween, that way we won't be disappointed till.......October 30!!
Well that's all I have for now.
Blessings,
Kelly

Sent from my iPhone

Another photo of Mimi at the RMH

2011-07-07T00:50:00.001-05:00

Amelia heading out on a day pass!! On day + 40

2011-07-07T00:48:00.001-05:00

Day +40

2011-07-06T13:23:00.004-05:00

Never mind...we are still here and we just may be for a while longer! She is doing fairly well. Just the damn fever that comes either at midnight or 8 in the morning! It is just so frustrating!! She is a little better mood today and not crying as much. I just don't wanna see her get depressed!! We are going out again on another pass. I don't see us leaving the hospital on Friday.... The doctor just came in to talk to us he said he would be happy if she could go 48 hours with out a fever....SO WOULD I!!! Her counts are great! She hasn't had blood products in I think it's been about 3 days. Her bladder is about the same some times she will have blood others there is very little......and in case I never mentioned it before...I hate roller coasters!! Never have likes them never will!!! I will try to let you know tomorrow how things go!
Blessings and thanks for checking in on us!
~ KELLY

Day + 39

2011-07-05T20:52:00.004-05:00

Greetings
asking for a special prayer for Amelia tonight...her fevers were 100.3 so if they stay down tonight and tomorrow and she can keep the pills down we get to get out of the hospital by either Thursday of Friday morning!!! Please say this prayer with us she is wanting this more than anything else in the world! I will update more tomorrow!

Day + 37

2011-07-03T22:02:00.003-05:00

Today we had a day pass!! She still had a fever at 8 am!!! UGH so frustrating, but still she got to get unhooked from Fred ( her IV pole ) and go to the Ronald McDonald house for a few hours! She was very sad when we had to bring her back and she was begging us not to bring her back! But she wanted me to ask every one to say a special prayer for her tonight that she stays fever free so she can get out of the hospital!!! Going to bed at the RMH for some much needed sleep. I will update again tomorrow.
Blessings,
Kelly

Day +36

2011-07-02T21:10:00.006-05:00

greetings,
It's a beautiful evening in Minneapolis or at least it looks so from the view of room 4122!! I'm afraid to give an update on Mimi, I'm afraid I might jinx her good steps forward! She went 24 hours yesterday with out a fever from midnight to midnight and it was 101.2 so in the BMT world not that high. I went to the ROnald McDonald House last night to get a good night sleep. When Nate and I arrived at the hospital this morning she was waiting in the lobby with out a wheel chair just her and Fred (her IV pole) Then she was up most of the day with a little nap here and there, but up for a good part of the day. At 4 PT came and worked with her a bit and she got on the trike and rode it around the unit like two and a half times. She is still wearing pullups and having blood in her urine almost like a light koolaid cherry color, she passes a few clots here and there. They are painful to her, but I told her at least they are passing. Please pray that this continues, praying for no fevers, for the blood to be less and less in her urine,for her to be awake more and more and for her to get up and moving more and more!! We will start to move some more of her meds to oral medicines. I am going to talk to the doctor tomorrow in rounds to see if maybe we can get a day pass for a few hours to go back to the RMH for a few hours, that might brighten her spirits a bit more. Thanks in advance for the continued prayers, I know He is hearing them and we are feeling them!!
Love, Hugs and blessings,
Kelly

When the world says, "Give up,"
Hope whispers, "Try it one more time."
~Author Unknown

When you come to the end of your rope, tie a knot and hang on. ~Franklin D. Roosevelt

2011-07-01T04:56:00.001-05:00

I really feel like it was/is the Bumex! She is moving so much better! Two trips to the bathroom, one unassisted... Yes hospital life (after 3 sleepless nights) is catching up to me, but she is feeling better, we even just took a half lap stroll...walked unassisted! She's had one fever for tonight at midnight, same as the last two nights but it only got as high as 101!! Praying for better tomorrow...wait it is tomorrow...well better day today!! Now off to take a nap, since my alarm is set for 7:50am to stop them from giving Bumex at 8am....

Sent from my iPhone

Prayers...

2011-06-30T22:47:00.001-05:00

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....

2011-06-30T18:33:00.002-05:00

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

2011-06-30T16:14:00.002-05:00

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

2011-06-28T22:21:00.002-05:00

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

2011-06-27T12:02:00.003-05:00

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

2011-06-26T09:00:00.002-05:00

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.....

2011-06-24T23:02:00.003-05:00

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

2011-06-24T16:28:00.004-05:00

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

2011-06-23T22:55:00.001-05:00

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

2011-06-22T20:08:00.002-05:00

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

2011-06-21T17:43:00.005-05:00

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

2011-06-19T22:22:00.002-05:00

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...

2011-06-17T11:23:00.004-05:00

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

2011-06-16T18:50:00.000-05:00

Day +19

2011-06-15T22:31:00.002-05:00

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!!

2011-06-15T12:50:00.001-05:00

Day +18

2011-06-14T17:25:00.002-05:00

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!

2011-06-13T22:29:00.001-05:00

2011-06-13T22:28:00.001-05:00

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

Day +16

2011-06-12T16:44:00.003-05:00

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

2011-06-11T22:07:00.003-05:00

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

2011-06-10T10:21:00.004-05:00

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

2011-06-09T14:25:00.006-05:00

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

2011-06-09T11:04:00.002-05:00

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

2011-06-07T09:54:00.002-05:00

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

2011-06-06T22:40:00.004-05:00

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

2011-06-06T08:17:00.002-05:00

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!!

2011-06-06T03:12:00.002-05:00

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

2011-06-05T22:53:00.003-05:00

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....

2011-06-04T22:11:00.003-05:00

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

2011-06-04T13:46:00.008-05:00

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!!

2011-06-04T13:04:00.000-05:00

Pray for comfort...day +6

2011-06-02T13:17:00.002-05:00

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

2011-06-01T22:50:00.002-05:00

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

Day +2

2011-05-30T12:27:00.008-05:00

Amelia did great, today her loose stools seem to have taken a break, she got out the bed and sat on the sofa for 5 hours and we had to make her get back in the bed around 8 pm. She did really well. They started her on a fentanyl drip at a low dose put with a PCA button and she hasn't touched to button yet cause she is a tough one! My hope is to get her over this nasty mucositis then have them take the steady drip off, and maybe just use the PCA as needed.

Below is a poster that a dear friend from here in Minnesota made for Amelia's transplant day!! ( Hi Terri) We loved it!! Amelia had is outside her door at the hospital, I'm going to take it and have it framed when we get home and hang it in her room!

This is a program from her blessing ceremony that we held just before the transplant!

He is a picture of Amelia on Day +2 sitting up on the sofa in her room! She sat there for about 5 hours because the more they get up out of the bed the better!! Like I said before this will be her roughest week yet because of the mucositis...but she should start to heal toward the end of the week.

This was her on transplant day when she received a package in the mail! She keeps smiling through it all.

Again thanks for all the prayers they are truly working!!! She is a tough little fighter.
Oh and her cells game from England!!!! How cool is that!!
Blessing,

Day 0 (transplant day) & Day +1

2011-05-28T12:58:00.002-05:00

Well sorry for not updating sooner...you know Murphy's Law? Well we are living it. Yesterday morning when the cells got here, they had a slit in the bag of cells. Well transplant was suppose to take place at around 4pm. Well the doctor came up and talked to us and said the hold up is in the processing of the cells. Apparently they lost a lot more cells than they had hoped about 50% of what they had collected had leaked. It of course leaked into another bag that is sterile but to be on the safe side they had to hols those cells over night in refrigeration and test them to make sure that they didn't grow out any bacteria. Needless to say yesterday was not as exciting as it usually is for a bone marrow transplant. The cells finally got here around 8 pm and it took all of about 10 minutes for those life saving cells to be infused. Now we sit and pray for those cells to grow and grow!

DAY +1 (Saturday May 28th)
I arrived back at the hospital this morning because Dr. MacMillian wanted to talk to me about the cells. Turns out that the cells did not grow any bacteria. So the lab is processing them and we are going to infuse the rest of them some time today. If there are enough cells we won't have to bother the donor again to give more. So we are praying that there is enough cells and that they get in there and go where they need to go and GORW, GROW and GROW!!!
Today is a low keyed day she has some throwing up earlier this morning but she is feeling OK now just a lot of loose stools which is to be expected with so much antibiotics that she is receiving and all the chemo that they gave her. The next few days will get a little rougher on her as the mouth sore are just now starting, she has the magic mouthwash for them, but really there is nothing that will help them but time. Pray that we see a steady rising white count with in the next 7 days!!!
I am sorry that these updates have been short and to the point, my brain still feels like it is in a fog. I am sure it is a lack of sleep and the stress that is going on around here.
Thanks for your continued support and prayers they mean a lot to our family!
Blessings,

Kelly

Day -1

2011-05-26T23:16:00.002-05:00

Today was an OK day for Amelia. She is doing fairly well.. Some of the side effects are starting to hit her. She's gonna kill me for this one but she is getting a lot of loose stools, which is to be expected at this point. She has times where she is feeling very well and then times where she us just yucky. She has only had one red cell transfusion and one platelet transfusion. She is a tough little fighter. Tomorrow is the big day!! Her infusion of new lifesaving cells should take place around 4 pm. Prayers for a quick recovery and a speedy trip out of the hospital!!

Blessings!!

Day -2 (Wednesday)

2011-05-25T22:22:00.002-05:00

Greetings!
We are at day -2 and this day has almost come to an end. She is finished with her Chemo's and almost finished with the flushing of the bladder and kidneys, where she has to tinkle every two hours. She has done very well with just about everything. I, of course, know that there are still rough days ahead that she has to get through. She did very well with the chemo and ATG which is some pretty nasty medicines. Today she has had a tummy ache most of the day with just a touch of nausea. She told me yesterday that she doesn't feel good. I told her it was more than OK to not feel well. I tried to explain to her that we had to tear her down in order to rebuild her up! Tomorrow is also the day that they will harvest the marrow from our donor. Please keep this very special person in your prayers whoever and where ever they are, they will for ever be our hero!! I pray that this donor has a very easy harvest and is safe and know what a wonderful thing that they are doing. I pray that Amelia keeps doing great and has lots and lots of smooth sailing through out this transplant journey!
She hasn't gotten many mouth sore yet but they will be coming next week, unfortunately. I pray though that they are minimal.
So far I am the only one who has spent the night with her at the hospital, I think Friday night she will let her papaw stay the night with her. I know that Nathan is having mommy and daddy with drawls, I haven't had as much time as I would like to spend with him. I know that Amelia needs me now and I pray that some day he understands this. It is so hard to be a family "torn apart" in so many directions, I know we will all get through this. I pray to all our special angels in heaven are looking out over each of my children! Especially their special brother angel Seth and my Nanny!
Well I am heading to bed to get a little sleep while I can!
Blessings every one!

Kelly

Day -5

2011-05-22T17:18:00.003-05:00

Today Amelia started her chemo's, ATG and Methypred. She has tolerated it all very well so far. For the ATG they gave her some premeds of Tylenol and Benadryl. She took a power nap with it (15 minutes). She was giving in to it! I left around 3:30 to go shower and eat dinner and spend a little time with Nathan, before I head back to spend the night with her at the hospital again tonight. I called her a while ago to check on her and see how she was doing, she answered the phone and said she was fine and up watching The Last Song. She is such a trooper, I pray and pray that her side effects are minimal to none! None would be great but very, very rare!! It's hard to watch her go through this, but her being her spunky cute self with the dang bald head makes it a bit easier to enjoy her feisty -ness! Going down for dinner then heading over to the hospital to spend the night with my baby if anything changes I will be sure and post!
Blessings,

3 of the 4 TV's in her room!

2011-05-21T09:35:00.000-05:00

Amelia's radiation contraption

2011-05-21T09:34:00.000-05:00

Day -7 & -6

2011-05-21T09:22:00.003-05:00

Day -7

For those new to this BMT journey that is how we will count the days till day 0 which is transplant day and from then on it will be + days.
We arrived at the hospital at 6:30 on Friday morning got admitted to the hospital and got her new room, which is huge and has 3 TV's in it and one is like a 52" TV. Should have pictures below. (Turnsout they are above) Then at about 8:30 she went down for her total body radiation. Which took a little while because of all the measuring that they needed to do. You should be able to see the contraption below that she had to stand in for about 10 minutes on each side and had to be real still for it. So far she has done really good, some times the radiation can make you really sick and nauseated. She has done well, still eating really good her new favorite is tater tots! She can order from the menu any time she wants between 6:30am and 7pm. She had a red cell transfusion last night and started to have an allergic reaction, so from now on she will get pre meds before she gets any blood products. I am sure now that she will be sleeping a lot more with the Tylenol and Benadryl. Other than that she is still her spunky little self.

Day -6
Today is Saturday and there isn't anything up on the agenda today but hang out and maybe get some platelets and premeds so I am sure lots of sleeping for her. Tomorrow, Sunday, she will start her Chemo and all those nasty meds and then we sit and wait for the side affects. Which I keep praying she doesn't get that badly. One of the chemos she will have to be force to tinkle a lot to flush the meds out of her kidneys and bladder.
I will try to keep you as posted as I can!
Blessings,

Spunky Monkey!!

2011-05-17T16:16:00.002-05:00

She is one tough cookie with more spunk than any one I have ever met. Yesterday she made me take her to get her hair shaved off. She begged me and I said what ever, I'm not going to argue she is the one who has to go through all of this so, we walked about 5 or 6 blocks ( I did any way she was in the stroller) got her head shaved and it was done. See the picture below, I took too a place called Stadium Hair cuts and after it was all over with the lady said "it's on the house! I can't charge you for this!" She did it with a smile on her face, she is brave! She loves the no hair thing especially this morning when it came time to get up and get dressed, cause that meant no hair to comb!
Any way tomorrow she has one morning doctor visit and then I have a few in the afternoon that she doesn't need to go to. Then on Thursday she has her GFR test the test for her kidney. Then we are finished till Friday at 6:30 she will be admitted and then she will have radiation at 8 am.
Well gotta run will update more!
Blessings

She talked me into shaving her head....:/

2011-05-16T16:01:00.000-05:00