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

Monday, May 30, 2011

Day +2

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

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

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

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

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

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

Saturday, May 28, 2011

Day 0 (transplant day) & Day +1

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

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


Thursday, May 26, 2011

Day -1

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


Wednesday, May 25, 2011

Day -2 (Wednesday)

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


Sunday, May 22, 2011

Day -5

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

Saturday, May 21, 2011

3 of the 4 TV's in her room!

Amelia's radiation contraption

Day -7 & -6

Day -7

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

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

Tuesday, May 17, 2011

Spunky Monkey!!

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

Friday, May 13, 2011

First week of work up

OK sorry I have been MIA...we have been non stop with clinic visits, we started out early on Wednesday morning and usually got most of the day. Wednesday was a hectic day she needed some lab work and testing done that involved A LOT of blood from her. I warned them up front that she is extremely hard to get blood from. Well they stuck her once nothing, they stuck her twice and still nothing....third time they stuck her in the foot...still nothing. She said that's it 3 strikes and you are out not more pokes....unfortunately the sticks or rather blood is a must, so down to pediatric vascular access we went. Guess what there was still two sticks there...ugghhh I wanted to scream and she did scream. They finally got it in and got the blood drawn, we thought she wouldn't need the line till Friday and so they pulled it out. Long story short we got a phone call from the BMT nurse and said that she would need a red cell transfusion her hemoglobin was way too low and they wouldn't touch her for a bone marrow biopsy unless the counts were up, so that meant that she would indeed be stuck a 6th time. So our first visit on Thursday was for radiation simulation to get measurements for the actual day of radiation. That was a difficult thing for me because they gave her some xray's in the position that she will be in for the actual radiation day...So I had to leave her in the room by herself and walk back down the long hall to see her on the monitor....SHE LOOKED PETRIFIED....that was hard, you know I have this sign at home that says "There is a many a tears in the heart that never reaches the eye"...was that so true that day... so after that we had to head back to pediatric vascular access to get STUCK this time the lady said she would put one in that she could keep in over night so that she could get her platelets in. Thank you! So the rest of the day went fine she got her first red cell transfusion ever and everything went fine. We went back to the RMH to see Mamaw and papaw and Marshall. Then Friday we got up early to be at the hospital for 9 in the morning so she could get her platelets and her bone marrow biopsy and her central line placed. Well that took all day due to scheduling problems she didn't go back till almost 2:00 and was finished with everything and headed to the RMH by 4:00. At 5:00 the site where the central line was place was still bleeding, so I had to call the BMT doctor on in the transplant ward and he told me what to do to get it to stop and the most important thing was to keep her still for a while so that the clot around the hole could get hard enough to stop the blood from dripping.......yeah easier said than done....but right now she is up in the room laying down with her BFF papaw watching Ramona and Bezaus...

So that is the jest of our week so far, next week is pretty much the same. Until next Friday and she will be admitted to the hospital that morning and have her radiation later in the morning.
I will try to update you as much as I can this week, I think it will be easier once we get admitted because there won't be as much running around and these two weeks. SO for now we have a free weekend to say good bye to dad and Marshall as they head back home.
Have a great weekend!

PS Amelia said to tell Santa and Mrs Claus (AKA Mr.Brian and Mrs.Susan) She loves you and misses you!!!

Monday, May 9, 2011

We arrived in Minneapolis on Sunday afternoon. We had to settle in into a hotel for the time being. Unfortunately there are no rooms available at the Ronald McDonald house. Then we got a little bit more unwanted news today, first we thought we were to start the work up on Tuesday and that got pushed back to Wednesday, then when we went down to pay another night at the hotel they said we could only stay here until Thursday night because they are booked up for the weekend due to the University's graduation, so now we are going to have to find another hotel for the weekend. I so wish things would go a little more smother with all of this, it just seems like we have had one thing after another for us to go completely wrong! She is holding up OK, I think she and I are just both ready to get this going! I will try to update in the next few days. Thanks for checking in on us! I pray that the rest of this journey goes much much smoother!

Thursday, May 5, 2011

Bittersweet news!

Happy Cinco De Mayo!!
We got the phone call earlier today that we have been waiting two weeks for. The donor has been cleared and we are proceeding with all plans. I am pretty much packed and just about ready to leave Saturday morning. Amelia will start her work up week on May 10th with an admitt date of May 20th and then on the 21st she will start the process with full body radiation. Transplant date will be May 27th. It is such bitter sweet news, I am happy that there is no more waiting for donors and that this is all finally working out, but at the same time I know what we are facing and the mountain that we are about to climb. I think we are ready, well as ready as one can be for this journey! Now we pray for safe journey up there and for my husband and son as they drive back home, and that we can get into the Ronald McDonald House, I hope we can get in there. I just don't know if we can afford too many hotel nights! Well gotta run and get to more packing!!!
Blessings everyone!!

Amelia's new glasses...she loves peace sign's