Alleluia, Alleluia.....AL LE LU IA!!!!!!

We are singing here loud and proud!! The local doctor here finally got on the same page as the doctor in Minnesota. Last Thursday we went for Amelia to give blood for a CD4 test that needed to be above 100 in order for her to go back to school. Well we got the results on Monday and they were well over 200....so guess who went back to school on Thursday.......

This smiling beautiful girl!!! Also guess who tried out for the junior High Cheerleading team and made it....this beautiful smiling girl!!!


God is AWESOME!! hard to believe where she was just 10 short months ago.....

Happiness!!

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!!

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

On the road!!

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

Happy day 100!!

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

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

Day + 90!!!

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

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

Day + 88

We had a pretty good weekend. Saturday we went out for a ride and to get Amelia some fried chicken from Kentucky Fried Chicken, she was not happy with it. It was spicy to her. We still had a good time just getting out and riding. Amelia loves to get out and just ride around in the car. Sunday we didn't do a lot the weather was so beautiful here. I cooked her some breakfast in the morning of biscuits and bacon for her and some scrambled eggs for everyone else. Then she and I went on a wagon ride...well she rode and I pulled her around the park across the street from the Ronald McDonald House and then we sat and watched some kids play soccer in the park. It was a beautiful day. Then we had some local friends come by and visit us for a while. Later Amelia talked my mom into frying her some chicken and making dirty rice. She ate pretty good.
Monday we had to go to clinic to get counts. It took us a little while because they misplaced her paper work. Finally her counts came back and they all looked pretty good. She had last had blood and platelets on Friday and her counts were White blood cells 4.6, Hemoglobin was 11.6 and platelets were 61. She was still a little low on her potassium and magnesium, but we opted not to infuse her and add them to her regular fluids.
We returned to clinic again this morning and her counts tend to bounce around, they try to reassure me that this is so normal for this stage in the game, but it makes me nervous and I want her to be better.....I KNOW...all good things come to those who wait..
Anyway her white cells today was 3.3, hemoglobin 11.1 and her platelets were 52. and of course her Potassium and Magnesium were both low 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

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 + 82

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






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

Day + 77

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

Day +75

On Monday they turned the continuous fluids flushing the bladder off, later that evening they took the water away. On Tuesday they took the catheter out. Today was a day that they turned her continuous fluids off to see how she is going to do on her own a little. She had to drink 24 oz on her own today. Well it was a lot of work to get her to drink that 24 oz but she did it. We are still making her drink a little more than that. Not sure if they will let her out tomorrow or not. Her urine has been a nice beautiful yellow. We are finding out that she can't take a lot of medicines!! She can't take Versed, Voriconazol, Valium, Benadryl, 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

Just to lighten the mood....

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


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....

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

Day + 66

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

Day + 64

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 + 59

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 +50

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

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

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