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PROVERBS 3:5-6

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

Friday, December 23, 2011

A long over due update!!

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

Wednesday, December 21, 2011

Thursday, November 24, 2011

New Picture....

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

Tuesday, November 22, 2011

Thankfullness....

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....



Saturday, November 12, 2011

When it rains it does more than pour!!

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...

Thursday, November 3, 2011

Prayers and small update

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....

Thursday, October 13, 2011

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

Tuesday, October 4, 2011

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

Prayers please!!

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

Friday, September 23, 2011

Day +119

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

Tuesday, September 20, 2011

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

Thursday, September 8, 2011

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

Wednesday, September 7, 2011

Day + 103

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

Sunday, September 4, 2011

Amelia standing next to Lake Superior!

A big snow-globe for her collection!!

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

Thursday, September 1, 2011

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

Thursday, August 25, 2011

Day + 90!!!

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

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

Tuesday, August 23, 2011

Day + 88

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

Friday, August 19, 2011

Day +84

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

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

Well she has about a week and a half and it will be three months since transplant, so she has a lot of curing to do in that week....I know I'm not holding her to the 3 months, because that is typically and well there is nothing typical about Amelia!!
We are going to ask on Thursday if this will keep us from going home in 3 weeks from today!! and if it does not, will he please call and talk to our local hematologist to make sure they know all about the stupid hemorrhagic cystitis and how to handle it if it should flare up once we get home ( which I pray that it doesn't) I will be a ball of nerves over the next few weeks. I want more than nothing to go home, but at the same time I want the best for my child I want to make sure it is the right thing for her. I worry about her mental health, if we don't get to go home and have to stay too much longer than her time, I think she will get depressed...she just wants to see her dog!! She misses her brothers and dad 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

Thursday, August 18, 2011

Day + 83

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

Wednesday, August 17, 2011

Day + 82

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






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

Friday, August 12, 2011

Day + 77

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

Wednesday, August 10, 2011

Day +75

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

Saturday, August 6, 2011

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

Saturday, November 29, 2003 1:16 PM CST

DAY +72

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


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

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

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

~~~Kelly

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

Thursday, November 27, 2003 5:00 PM CST

DAY 70



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


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



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

Friday, August 5, 2011

Just to lighten the mood....

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


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

Thursday, August 4, 2011

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

Tuesday, August 2, 2011

Day + 66

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

Sunday, July 31, 2011

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

Tuesday, July 26, 2011

Day + 60

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!

Monday, July 25, 2011

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

Tuesday, July 19, 2011

Day + 53

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!

Saturday, July 16, 2011

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

Friday, July 15, 2011

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

Thursday, July 14, 2011

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

Wednesday, July 13, 2011

Day + 47

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

Sunday, July 10, 2011

Day + 44

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

Saturday, July 9, 2011

Day + 43

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

Wednesday, July 6, 2011

Day +40

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

Tuesday, July 5, 2011

Day + 39

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!

Sunday, July 3, 2011

Day + 37

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

Saturday, July 2, 2011

Day +36

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

Friday, July 1, 2011

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

Thursday, June 30, 2011

Prayers...

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

Sent from my iPhone

Prayers....

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

Day 33 & 34

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

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

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

Thoughts for the day:

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

Tuesday, June 28, 2011

Day + 32

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

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

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

Monday, June 27, 2011

Day + 31

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

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

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

Sunday, June 26, 2011

Day +30

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

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

Friday, June 24, 2011

Midnight up date.....

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

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

Day +28

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

Thursday, June 23, 2011

Update coming

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


Sent from my iPhone

Wednesday, June 22, 2011

Day + 26

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

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

Tuesday, June 21, 2011

Day +25

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

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

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

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

Thought for the day:

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

Sunday, June 19, 2011

Day + 22 & +23

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

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

Friday, June 17, 2011

Day + 21 Friday...

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

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

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

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