Saturday, December 29, 2012

Day 19....update

Update on Heaven Nicole..... In the past few days she has made some good advances. She removed her own ng tube and is eating great, Dr. Edwards took her off of some meds that, for now, she doesn't need, she is getting up and walking 3 times a day, and her mouth is healing up wonderfully
Right now she is on her second BT for the day beings her Hemo. was a little on the low side, which is normal. Her daddy brought her some blow pops, chicken drummetts and some goodies that our sweet neighbors Bobbie & Chuck made and sent. The treats are yummy. She has gained a few ounces, she will be weighed in again tomorrow. She misses Milton a lot and she is glad that he is feeling much better and hopes to see him soon.
I was reading over the notebook that Duke sent me today, I read so much my eyes started crossing up on me, so I laid it down until tomorrow...I read some more. Again we thank you all for all you have done....your prayers, thoughts, calls, cards, encouragement and positive thoughts do not go overlooked at all. Please keep those prayers coming as the Dr.s are saying she is right on target.
We will be here until her counts rebound to a normal enough range for her to have a bone marrow biopsy done, not sure when that will be beings this round of chemo was pretty rough so her counts will be down just a bit longer than before, so we could be here another 2 weeks or so...but hey, that's o.k. God is good, all the time. ♥ to you all and may we all be blessed with a wonderful New Year.

Friday, December 28, 2012

Happy Wednesday.

So far things are about the same. Heaven is about to eat Jello for lunch....amen. Lord willing she will be off the feeding tube by tomorrow. Keep praying specifically.

Update.....Day 18

Update on Heaven Nicole,.....Well, she literally has no wbc beings it is at 0.1 but her mouth is healing up really good, she was taken off the feed tube and has gained a few ounces. The Dr.s are still amazed at how well she is doing and I keep thelling them that it just shows that there is Power in prayer. God is so good. Dr. Edwards also has taken her off of some of the unnecessary meds and that is a great thing in my eyes. She can actually use a regular toothbrush to clean her teeth...YA!!!!! We have to keep the mouth clean for its a breeding ground for bacterias of all kinds.
Yesterday she ate 2 turkey burgers, 2 McChickens, french fries and a 32 ounce slushie. She hasn't had anything as of yet today but she isn't a big breakfast eater either. She has been up and walking 3 times a day and the nurses are always glad to see her out. Her cousin Nickolas D Doylespent the night with her last night and they laughed so much, it was such a blessing to hear them laugh together.
So as for now only a few things have changed for the good and with her now having appetite we believe things will be much better real soon for her. Also, we are not sure at this point when the bone marrow biopsy will be done beings we have to wait for her counts to rebound to a good level, so it could be next week or the following, just not sure right now. Keep those prayers coming and thank you all for the Christmas wishes, cards, calls, encouraging words and positive thoughts. We ♥ you all.

Monday, December 24, 2012

Merry Christmas Eve.....

A little update on Heaven Nicole .....she had a very good night last night, God is so good. She was able to get through the night with just one rinse from the Magic mouthwash and the Doxepin. Praise the Lord. Also, she slept in the recliner all night and is still there sleeping as I type, as you can see in the pic below. Her liquid feed is already up to 80 ml....which is a huge leap for her, our goal is 90 and we pray to be there by tomorrow. Her temps stayed within a normal range all night as well as her BP's. Really looking forward to tomorrow, we love Christmas time, even if we celebrate it all year long. Anyways Merry Christmas Eve to everyone and again, thank you for the prayers (keep'em coming), the cards, the encouraging words and all the gifts. May Christ bless you all abundantly as He has blessed us with all your kindness and love.


Chosen Mothers

A fellow ONC Mom posted this on her wall. Wanted to share with all of you.


By Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.
Did you ever wonder how mothers of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation.
As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard."

Finally, He passes a name to an angel and says, "Give her a child with cancer."
The angel is curious. "Why this one God? She's so happy."

"Exactly" smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair.
Once the shock and resentment wears off, she will handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she believes in you." No matter, I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps -"Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them." She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side."

"And what about her patron Saint?" asks the angel. His pen poised in mid-air. God smiles, "A mirror will suffice."

Sunday, December 23, 2012

Next time you want to complain about having a bad day.....put someone else before youself and you will see how blessed you really are.

The mouth pain has grown.....

Just posting a little update on Heaven Nicole .....First off, she has gained 1 pound...she is now 112.6 Ya!!! She had a really good night until about 3 a.m. she woke with her mouth really bothering her. We gave her some mouth rinse and she seemed to be o.k. or at least for a little while.
She woke around 7:30 a.m or so and was just a crying, I called the  Ped. Onc. resident in the room and he took a look at her mouth and the mucasitis has now moved into her throat. Well, praise the Lord, we are still not having to use any morphine, and I pray we don't, but Dr. Daniel ordered some Magic Mouthwash, then I proceeded to tell him that that would not help at all but, then we all put our heads together and came up with the idea of having Heaven use the Magic Mouthwash and gargle the best she could, then after a few minutes, use the Doxipen and also gargle with it.....again, praise the worked!!!
Heaven was able to go and take a soaking bath, and also walked a little bit too. Amen. Milton Moore, bless your heart I certainly hope you feel better soon, but you did Heaven more good by not visiting. Thanks you and eat lots of chicken noodle soup. :)
Dr. Atkinson is still pleased at Heavens progression even with the mucasitisin the throat now. We are all praying that this is the peak and that it will start tapering off soon.
May you all have a very blessed and Merry Christmas, we love you all and please continue to pray for Heaven and our family. <3

Friday, December 21, 2012

This just evening update added

A tiny morning update on Heaven Nicole .....Dr. Atkinson just came in the room and I asked her..."In your opinion, how is Heaven doing?". She answered with..."Heaven is doing wonderful..." Also, the mouth rinse for the mucasitis has only been used with Heaven, and Dr. A was also pleased to know that it has worked good enough to where Heaven wouldn't need any morphine for the pain since she started using it the other day. All of the glory goes to God, I don't want to take not one bit of it from Him. Keep those prayers coming.
Also, yesterday I received a call from a Nurse Case Manager at our insurance company and I had to choke back the tears. Wow!!! My God is so good, is about all I can say. She proceeded to tell me that beings Duke is listed as "in network life hospital" that all 4 steps of the transplant is.....get this.....100% covered under the plan. Praise the Lord!!! Also, they will be taking care of travel and lodging expenses while there at Duke. Amazing!!! I am speechless at this point.
Update on Heaven Nicole ......She has had a really good day. She was able to go and have another soaking bath, she opened a few gifts that some very nice people brought by for her and the other kids, she has been able to get some more rest, we were able to bump up the feed on her NG Tube and she is taking it well, the only issue right now is trying to get the last bit of 2 blood trans in her, we have changed port sites and it is still giving us a hard time, but it is almost done.
So set aside the last trans. she is doing great. Lord willing after this she will feel really good tomorrow beings her platelets and H & H will be up. She is my little trooper. And i must say that God can and will answer so many of your prayers, all we have to do is pray specifically, He has answered so many of our prayers and I know as long as we pray specifically.  Love to all.....and may you all have a wonderful night.


Wednesday, December 19, 2012

NG Tube added Today

Update on Heaven Nicole .... This morning they drew labs and the counts came back all wacky, so (I requested they do a finger prick again) and the Plebotomist came in and had to prick 2 fingers to get enough for labs. When the counts came back they were better. As of right now we are not sure what is going on with the draws from the port but we are figuring that it from where she is getting so many other things through there.
After Heaven woke, she immediately wanted a hot soaking bath, so she did but we didn't stay in there as long this time. We returned to the room for her to have the NG Tube placed, she is on 30ml per hour which is equal to 1 ounce per hour, we started low beings she hasn't eaten since Sunday evening around 4 p.m. or so.
She has been resting well and with the fact that she is now getting nutrients whe will be feeling much better in a couple days. Dr. Fisher told me of a mouthwash that will help numb the pain from the mucasitis, so we will be trying that as soon as she wakes up. 
She also received a package from Sanville Elem. School from the 5th grade class, unsure of how they found out about her, but each of the kids int he class had made Heaven a CHRISTmas card. I thought that was so sweet of them.
Well, that's about it for now, if any of you would like to know more you can text or call me on my cell. Blessing to you all. ♥                                       
And she took it like a pro

Tuesday, December 18, 2012

Early start to Tuesday

Update on Heaven Nicole ..... Well, the day started very early, like 3:30 a.m. early. Her mouth was hurting so bad that she asked for the pain reliever, then between 5:30 and 7:30 a.m. she had 2 lab draws and 1 finger prick...due to the fact that the first 2 draws  had basically been diluted with saline and it was showing a hemoglobin of 4, but then when the finger prick was requested the count came back at almost 8...that was great news to us.
As the day progressed, Heaven wanted a hot bath, so I went and cleaned the tub (for her safety) and ran some water. then I came back to get Heaven and she proceeded to just have a soak and she was enjoying it until she started getting heated up. So I suggested that she go ahead and finish up, well, upon getting out and getting dressed, she told me she felt as though she could pass out, so she got down on her knees and held her head down while I got a couple nurses to help me get her back to the room. All it was was that she just got to heated in the bathroom...I supposed that I ran the water to hot.
Anyways, she came back, sat int he recliner for about 20 minutes, drank some Tru Moo chocolate milk and then took a nice long nap. She has been doing well since then and has drank even more choc. milk. Dr. Edwards came to check on her mouth and seems to think it may be confined to the front part of her mouth where she has a cold sore, but it is just the beginning of the mouth side effect, but she did let him know that she would prefer the NG Tube if it comes to that.
I would just like to say thank you to everyone for all your prayers, encouraging words, cards, thoughts, and calls. We certainly miss you all. Blessing to you and your families.

Monday, December 17, 2012 7 after returning to Roanoke

Update on Heaven Nicole .....She was really quiet yesterday, that was until Milton Moore showed up and with homemade spaghetti, then she perked up a bit. She loved the spaghetti even though she didn't eat much, she says she will try to finish it today. Thanks Paula Katsifos Moore for making and sending some for her. She did get up and walk around the floor with Milton for some much needed excercise, that was after I had rode with Dylan, Miltons brother, to the mall to get Heaven some shorts to wear then to Taco Bell and Burger King for 2 large cherry Icee's.
Well, after Milton and Dylan was able to finally leave, Heaven was so tired and almost fell asleep instantly, I am assuming it was because her hemoglobin is low. She did get a goods nights rest and when Dr. Atkinson came in this morning, she asked Heaven to open her mouth so she could see inside, and she can't see a lot of musacitis setting in but she could see some redness and informed Dad and I that instead of place an NG Tube for nutrients that they can use her port this go round, which is a blessing and this way it won't have to be changed every so often. Heaven was happy to hear that, I do believe. Also, she chatted with Dad and he asked her several questions pertaining to Duke, which I am glad he did have the opportunity to speak with one of the Dr.s.
Dr. Atkinson also informed Dad and I that Heaven is doing great and that she is progressing well at this point. We ask that you all continue to pray for remission, surgery to go well, and for the 100% healthy match that her body will accept and start producing healthy bone marrow quickly after being transplanted. May my Jesus bless you all that have been a blessing to us. <3 Love in Christ 

In all honesty, I think it should say.....because thay've been strong soooo long. Crying is so good for the cleansing fo the soul. It's o.k to cry.

I'd like to ask everyone to say an extra prayer for Heaven Nicole . Bless her heart she hasn't been able to eat anything today but she has been able to get down some pear juice and 2 containers of chocolate milk. They will start liquid nutrients tomorrow sometime and, praise the Lord, they will not have to place an NG Tube as mentioned before, as they can use her port. Thank you all, I know that we can count on you all .

Saturday, December 15, 2012

Very eventful day here in room 1145

Update on Heaven Nicole .....Today has been somewhat eventful around here. First, her cousin Nickolas D Doyle showed up at 10 a.m. and hung out most of the day while his Mom went to do some Christmas shopping, then a Pastor and his wife had driven 4 hours to come and pray with Heaven, then a little elf brought in a Christmas tree and some decorations, we had fun with that one, then her daddy shows up, then a med she needed showed up and she got a needle stick in the arm, then a friend of Heavens, Natalie Paige, her parents brought her by to visit with her for a while, now she is texting her favorite person right now while chewing on a blow pop.
Dr. Fisher came in this morning and she is also pleased at how Heaven is progressing and that she is one tough chick. Heaven has gotten up and walked some, she still isn't eating to much but lose of appetite is also a side effect. I have her on a every 2 hours to get something to drink and Dr. Fisher actually liked that idea. So, Lord willing, tonight she will be able to get her some more restful sleep so that she can energy tomorrow for anymore visitors that may peek their heads in the door.
Wishing you all a wonderful weekend. <3 Many blessing to you all.

Thursday, December 13, 2012

Good day but not much of an appetite

Update on Heaven Nicole.....Well, its been a good day today other than finding out that one of the meds she was on was making her hallucinate while she slept, so she was taken off that and it was pulled from her file. Wow, just to hear about it gave me the chills, bless her heart. She was able to get her a good hot soaking bath today and her head washed...she enjoys those hot baths. :) She woke this morning wanting chicken noodle soup, then ended up having almost 3 helpings...but that's about all she has had today, she even passed up a grilled cheese sandwich. I am trying to get her to eat some yogurt beings she has had a lot of antibiotics since we have been here and I am wondering if that may be an issue with her stomach.
Dr. Atkinson was very pleased with how she is taking to everything when she came in earlier and went over her. Her vitals have been looking good so far. I will update any further news later. Love and grace be with you all and may you have a wonderful evening. ♥

Wednesday, December 12, 2012

Long Night.....

It has certainly been a long night here. It is now 4:24 a.m. and I am still wide awake and can't sleep, I think I may have gotten about 30 minutes of sleep, but just knowing your child doesn't feel good is enough to do this to a Mom.
Anyways, Heaven Nicole sleep very good through the night and at 4:00 a.m she had to have a dressing change as it had began to come loose and we don't need a loose dressing, beings any kind of bacteria could make its way in and get into the port area.....not a good idea, so it took her a few minutes but Heaven was able to get the dressing off.
She is now cuddles back up with her bear and is resting. Her vitals this morning were good. Here's hoping you all have a wonderful Wednesday. <3 Will update later.
Update on Heaven Nicole.....bless her heart she has done very good today, praise the Lord, she has had an awesome appetite. She had some grapes, 4 orders of mashed potatoes, meatloaf, right at 4 helpings of cinnamon toast crunch, pizza rolls and orange fanta to wash it down with. I just pray it all stays down, but all this was throughout the day and not all at one time. I know she would love some homemade spaghetti but our neighbor visited today so that won't happen for a while beings she usually makes some for her, but that's o.k.
Anyways, this morning Dr. Atkinson approached me in the hall and commenced to tell me that we will be here for the next 3 to 4 weeks and we then sat down and had a good long talk that helped me a lot. I certainly love talking with her, as she helped ease my heart and mind of a lot of things. She had told me that she was so impressed as how mature she has gotten over the last year....mainly when she wanted to go in for the LP while dad and I went to have our blood drawn, she said that takes a lot of courage to that.
Also, one of the workers her is going to bring us a small scale (around 4 ft.) Christmas tree to display in the room beings this is where we will be then, and that's o.k. I hope you all have a wonderful evening and may the blessings of the Lord be upon you all. <3

Tuesday, December 11, 2012

Heading to Rocky Mount.....

Getting ready to leave for Rocky Mount to get Heaven's labs drawn. I will update her counts as soon as we return home. I laready have everything washed, packed and loaded back in the truck. Hope you all have a very blessed day. ♥

Monday, December 10, 2012

Well, her hair is now gone...per her request

Today, my heart was rewound to an earlier date, a date in which Heavens hair had started to come out and I then proceeded to shave the remaining hair off. Well, today, she requested that her hair be shaved so that it won't be coming out all over her pillow and all. At first, I cried because I didn't want to so this, then after a receiving a big hug and comfort from Heaven and some encouraging words from Milton, I could then proceed to do what I had been asked to do.
Wow, the strength that God gives us.....Also, I was on the phone today with Duke for almost two hours talking about multiple things like Heavens type of treatments, her room, the floor she will be on, parking, activities, etc. I was also informed that Duke Children's Hospital had received Heaven HLA Typing, which is Human Leukocyte Antigen which is a series of tests done before a transplant to determine how closely the tissues of a donor and recipient match. I was told that they will begin looking for a match for Heaven as soon as possible.
Please continue to pray specifically as you all have been asked of. We would like to thank everyone for all your prayers thus far. I would also like for everyone to know that 100% of my focus will be on the well being of Heaven, so I ask that all of my family to please try and understand that I am not ignoring, setting aside, shunning, or trying to be rude.....I ask that you put yourself in my shoes (and Heavens) for a moment so that maybe you can understand why.
We love you all.....and we are all gonna love Heaven through it. Many blessings to you all and God bless.


For my daughter Heaven Nicole.....this sounds just like you ♥

I’ve endured this discomfort before and survived it, and so I can survive it again. I’ve felt these feelings before and sat with them, and so I can sit with them today. I’ve felt like giving in before and held onto hope, and so I can continue to hold on today. I made it through yesterday, and so, I can also make it through today.
I can do it.
I will do it.
I am doing it.
I am strong.
I am capable.
I will not give up.
I will never ever give up.

Sunday, December 9, 2012

Heading to the house for a day or so.....

Update on Heaven Nicole.....It's almost 10 a.m. and Dr. Atkinson came in to let us know that Heaven can go home but to be ready to come back within a few days. Her wbc is 0.5 and her anc is 400, so she will get to get a breath of fresh air before coming back and then we will be here for the duration of time for her counts to rebound and to get the bone marrow biopsy done. 
Just keep praying and we hope you all have a wonderful Sunday.
Well, we made it home earlier today and I have unloaded the truck to get some things cleaned up so that I can load it up again. Poor Heaven Nicole has 17 lbs. of fluids that she is going to have to work off, but this is due to all the fluids she has needed over the past week and it is also a side effect from the Clofarabine. The Dr. suggested that she do some walking .....and walking we did, looki
ng for some sunglasses that we could not find. Anyways her temp. right now is pretty good and I will be keeping an eye on it throughout the night and for the next few days. She seems to be pretty tired so tomorrow will be a rest day for her to gain any strength she may need. Love you all and just keep praying ♥

Saturday, December 8, 2012

Day 5.....Lots going on today.

Here's a little update on Heaven Nicole.....Today has been a fairly good day. She had another minor nose bleed and her counts were down so by 11:00 p.m. tonight she will have had 2 blood transfusions, 1 platelet transfusion, 3 rounds of chemo, 1 steroid, 1 nausea med, benadryl and tylenol. Bless her heart. She was tired until she got a visit from one of her favorite people, Milton Moore, and with that.....everything around her just disappeared. I am so glad he has been coming by and calling her, beings it keeps her spirits lifted and also keeps a smile on her face. He is such a blessing to her.
Lord willing we will get to go to the house tomorrow for a few days as long as the fevers stay at bay, but we will be coming back as soon as they set in. She is scheduled to have the bone marrow biopsy on or around January 1st, and then sometime after that we will be heading to Duke Children's Hospital in Durham N.C.
So, again, I ask you all to please keep praying specifically for remission and a 100% match.....I am asking this because I know just how big my God is that I serve and I know He isn't going to turn His back on us now.
We love you all and you are all continually in ours prayers, you are all thought of often and missed much, and we also understand that there are several of you that would like to come and visit but can't.....and that's o.k. just knowing that we are in your thoughts and prayers is comforting enough. Many blessing to you all. <3

Friday, December 7, 2012

Day 4.....Update on Heaven

Update on Heaven Nicole.....Dr. Edwards says that she is doing very good tolerating the intensity of the chemo. We justt might get to have a break and be able to go to the house for a few days before the side effects set in, I know she would like that, then once the side effects set in...we will be here for the duration of the time until the bone marrow biopsy and for the SE to cease.
So far, she has had light chest pains that didn't last to long but we think it may have been from her extensive laughter while talking to MiltonMoore...I certainly love to see her laugh, for it is true that a merry heart doeth good like a medicine. Also, she has had some eye sensitivity as to everything looking very bright, but once her eyes were rested they seemed to be o.k. Dr. Edwards has suggested that she get some dark sunglasses to wear outdoors.
Other than this she is doing great. She was surprised last night when Milton and his Momma showed up for a visit, she was so surprised that tears were coming down her face. She was also visited by her favorite cousin, Nick, and the three had lots of fun int he game room and while hanging out together. I think last night was a wonderful night for Heaven and i know that she thoroughly enjoyed it. Thank you all for helping to put a smile on her face and encouraging her the way you are...Thank you so very much ♥
Heaven, honey, you keep on smiling for we will get through this again.....together. 

~~~ ♥ We are all gonna love you through it ♥ ~~~


Tuesday, December 4, 2012

Day 1 back in Roanoke

O.K. going to try and give everyone here an update on Heaven Nicole. We arrived in Roanoke just before 9 am. We were sent to room 1156 and while Heaven went to have the LP, she wanted Wayne and I to go ahead and get our HLA Typing done. So when we were finished and made it back to the 11th floor, I went to the treatment room where they were finishing up with the LP. All went well with it and they had to draw a second set of labs while she was there lying still. 
She made it back in her room and ate a chef salad with spinach, a hamburger and some fries....I'd say she was pretty hungry, and where her Hemoglobin was at 5, she had to receive a blood transfusion, with that comes a Benadryl.....she was knocked out for a little while but we think it done her some good. I then began to voice my concern as to where we were surrounded by a few kids with the flu, and then, Praise the Lord we were moved to room 1145 and now we are settled in for a while. 
Thank you all for your continued prayers, please keep them coming, please keep them specific, and may you all have a wonderful night. ♥ to all.

O.K. it will soon be 14 hours since we arrived here in Roanoke and since Heaven Nicole has received 3 rounds of chemo and one LP with chemo inserted into her spine, 2 units of blood and a unit of platelets. She is tired and is now sleeping sound beings with each transfusion she needs a Benadryl. Goodnight to all our family and friends and I will do my best on keeping you all updated.


We can do this.....she is gonna be o.k.

We will be leaving for Roanoke here shortly for Heaven to start her chemo. Her first one will be an LP in the spine to get the chemo there first. Then at some point, Wayne and I will be going for HLA Test so that a bone marrow match can be searched for. Heaven and I will be spending just over a month at Roanoke, then we will be moved to Duke for several months.
We are asking that everyone please p
ray specifically that the chemo puts it back into remission, that we find a 100% bone marrow match and that she grows up to be happy, healthy and full of life to show others just how good God really is. Heaven is in really good spirits about it and she has been such an encouragement to me these past few days and I know that she is a fighter. Thank you all and please bear with me on the post as I will do my best to keep everyone posted as to whats all is taking place. We love you all so much ♥

Saturday, December 1, 2012

Our world is yet shaken again.....

O.k......Most of you know by now that Heaven has relapsed and we will begin treatments in Roanoke on Tuesday of next week. During the chemo the Dr.s at Duke will be looking for a bone marrow match, as soon as one is found we will be headed to Duke for a while. 
I would just like to ask everyone to please pray for a 100% healthy match that her body will accept. Thank you all so very much and may God bless you all.
I guess I can also add.....All we want for Christmas is a cure for Childhood Cancers.