Latest Update

Update on Heaven Nicole.....First off we would like to thank our Saviour Jesus Christ for answering our prayers and for being the loving Saviour that He is. All the glory and praise goes to Him.
Yesterday the decision to proceed with transplant was made as the Dr.s had come up with a plan that they feel will best suit her and is also an answer to prayers as it didn't involve radiation. Heaven will start conditioning chemo on Thursday March 21st and her 2 cord blood transplant will take place on April 1st. What we need everyone of our family and friends to pray for now is for the RSV to disappear, the chemo to do its job, her organs not to be affected by the chemo, some grafts vs. host but mainly grafts vs. leukemia (being the GvL will kill any remaining leukemia cells), and we also need a successful engraftment. So, remember that God is listening to those fervent prayers that you all are praying and we ask that you keep them coming. Many thanks and love to you all.
Thank you all for the calls and keep them coming, the cards, the visits from allowed visitors, the prayers, thoughts and everything else. Many blessings to each of you <3

Update

Whew!!!....what a day it has been. Heaven Nicole has had more test today than she has had since we have been here. She is so tired and still has 2 Ribavarin treatments to go and its already 5:57 p.m. and we haven't even gotten the CT can done yet. This morning she has had her eyes dialated and checked, an EKG, then a breathing test that she couldn't complete right now, Now she is trying to get down and stomach some liquid for the CT scan. Then in the morning I am to be in for surgery to place an Hickman like Heaven has so that she will get 6 days of my wbc's before the chemo and radiation starts. 
As of right now her Transplant is scheduled for March 25th. 
So right now we definitely need everyone to really begin to pray. The preliminary report showed that Heaven is in Remission...Praise the Lord!!!!! So now we have to pray her through this rough week of test after test and then into engraftment.
Wayne is on his way down now as he will soon have to lovely ladies to take care of...anyone else wanna help? lol. Love you all and many blessings as well. ♥

Update on Heaven.....

Update on Heaven Nicole.....She is still on the breathing treatments w/Ribovarin for the RSV and her lungs are looking much better. This week is going to be very tiring her as she will have to go through the pre-transplant testing of getting a echo-gram, lung testing, kidney testing and a ct scan so to make sure, again, that there is no other infections, bacteria etc. hanging out anywhere.
Also, Dr. Driscoll came and has asked me if I would be willing to have a central line placed as to donate my white blood cells to Heaven...do you think I had to think twice? Nah...so sometime this week that will be done also and this way heaven will be receiving my healthy wbc to help her immune system build up quicker beings she has been over 3 months without any white cells and no immune system. 
So, on the 18th, Heaven will begin radiation and conditioning chemo to get her ready for the transplant. This will go on for 4 days and then she will have a day of rest and then the transplant by the weekend.....

Now, with all this said, please continue to pray as things are looking much better with all the glory going to the Lord. ♥

"Recovering Fundamentalist" - Mark Lowry

Lord, I know I didn't stumble upon this by accident.....I thank You for showing me early on that You gave Your life for all, not just a certain sect of people. Thank You so much for this 10 minute sermon and I thank You for Your Amazing Grace.

An update on Heaven

Update on Heaven Nicole.....for the last 8 days she has had fevers, and there for a couple days she went 24 hours carrying a constant fever which at one point got up to 105*. As of today she is still having fevers but, praise the Lord, they are becoming fewer in number. Today the Dr. is suppose to be starting her on TPN which is a mixture of nutrients, proteins and calories to help her get the nourishment she needs so that she can start feeling better beings all she has had in 3 days is a 15 ounce can of pineapple and 3 drinkable yogurts. She hasn't had any significant weight loss which is good thing beings she was eating great until the RSV showed its ugly face. Her counts are still where the Dr.s say they ought to be but without the nutrients some of the counts are getting a little low, so I am going to stay on their backs until they get her the TPN.
Dr. Driscoll said he will not wait any further that mid next week to get the bone marrow biopsy done so that we can move forward with the rest of what needs to be done to get Heaven better and back home before the summer is over.
Keep those prayers coming for remission and now for the RSV to go away so the fevers will stop and Heaven will start feeling much better. Love and miss you all and Lord willing she will be able to have a couple visitors every so often here soon. Blessing to each of you and we hope you all have a wonderful day ♥

Sorry for the delay in updating..... :-)

Update on Heaven Nicole.....I'm going to try and get this update in, in a nutshell. The last few weeks heaven has been doing very good, counts are where they need to be, up and walking, clear lungs,....this past Sunday (wee hours of the morning like at 2 a.m Monday) she spiked a 102 fever then it went away...later Monday afternoon around 3 p.m. spiked a 102 fever then it went away. So far today she has had a fever of 103, 102, and 103.8.....we found out today through some test taken yesterday why the fevers are coming in so late. The beginning of last week her throat was really dry, so myself, Heaven and even the Dr.s and Nurses were saying it was due to the dryness int he rooms and on the unit. Well then she was due for her monthly dose of Pentamadine (sp?) which is to keep her from getting PCP (pneaumasistic carni pneaumonia) and with that she first had to inhale Albuteral. Then it happened.....not sure if the virus had just been lingering for a week or so but she now has RSV, her lungs are still sounding great even with her dealing with this, so, with all that said...there is really nothing that can be done except to keep a close eye on her and let it run its course, which will be between 2 to 3 weeks. Dr. Driscoll is going to talk with the team about still doing the bone marrow biopsy but maybe put it off until sometime next week. At this point we would appreciate your prayers for a quick and full recovery from this so we can move on to the next stage.
Those specific prayers are working so keep them coming. Blessings to you all and I would also like for everyone to please pray for our oldest daughter Alexandra as she is having a very emotional day due to some unforseen circumstances. Thank you all for the love and compassion that you all continually share.....will update later. <3

To all of you who are in the fire, in a trial or to the one that may just be having a bad day.....

Trooping along.....

Just sitting here, crocheting, enjoying the sun shining through the window, listening to Pandora and then what I need to hear comes through a song.....so, I sure am glad that the Potter know the clay and how much pressure it can take. Thank You Lord...thank You.
Now a little update on Heaven Nicole,.....she is running right on through this chemo like a triathlon runner, whole heartedly,  giving it all she's got to get better and to beat this ugly monster. And that she will do because she is eating well, getting up and walking, doing everything she is being asked to do to stay as healthy and active as possible...and that smile, oh how I love to see that beautiful smile. Between 3 to 4 weeks from now they will be doing another bone marrow biopsy and aspirate.....so does everyone know what to specifically pray for?????

Remission!!!!! This is what we need now to happen. Then after that they will go right into the next step which will be transplant chemo. So, one bridge at a time. Keep prayer for our trooper and also her close family and friends that miss her so much. <3 , {{HUGS}} to you all and a big muwah to my grand-babies. We miss you all but we will be seeing you as soon as possible.

Started the Chemo today.....

Update on Heaven Nicole, she had a good nights sleep last night, She had some teddy grahams and toast for breakfast (also her meds). She received the Decadron eye drops and they began her first round of Fludarabine (type of chemo)  at about 10:30 a.m. which it ran for 30 minutes, then a few hours after that she received Cytabine that ran over the course of 4 hours. After that I got her up and out of the room and walking, only a lap and a quarter, but that was better than nothing. Then the plumber had to come in and replace the ring on the toilet...easy you may think...NOT, I had to take Heaven into another room being he had to use a saws-all to get the bolt cut off so he could put a new ring on the toilet. LoL. Well, I told the fellow by the time Heaven and I get to go home this room will be just like new again...he jsut giggled and said "O.K." Hope you all had a wonderful day :)

Surgery Day

Today Heaven had surgery to place a Triple Hickman Cathater and to remove her Portacath that had started to not function properly.
Well, praise the Lord, the surgery went great. She has been resting well and says she feels pretty good. Keep praying specifically.....chemo starts tomorrow and will go through Tuesday.....we need remission.
Love and miss you all.

Below is a pic of Heaven just after surgery in the recovery area.

..... <3 She is my hero <3 .....

As you can see...we are back at Duke Children's. They suggested that we ride back down here beings I could tell that Heavens platelets are getting very low. It's actually the same distance from the house to Duke as it is to Roanoke. We will be staying at the RMH and then on Thurs. Heaven will be getting surgery to have the Hickman line placed and her Port removed. Keep praying specifically. Love you all.
We spent a few hours int he Jim Valvano day hospital so Heaven could get a platelet transfusion. Tomorrow we will be back for more as they want to keep her topped off for the surgery on Thursday and also, after the surgery, on Friday she will start the induction chemo and that will last for 5 days.
Keep praying specifically. Love you all. <3 {{HUGS}} from Heaven and I. :-)

 

Update in a nutshell

Update on Heaven Nicole ..... It's been a long week, a very tiring week for us all. Wayne was able to head home yesterday for work today to find that he only was ablw to work a few hours. So, at least he was able to get ina  few hours, right? Anyways, we went in today to get Heaven a blood transfusion, she ended up getting 2 so that she would have enough for the weekend. While there Dr. Driscoll and Dr. Jerilyn came in to speak with us about a plan of action. So, she will start off next week with the placement of the triple Hickman catheter, they will also be removing the double lumen port, once that is done within a day or so she will begin another round of  Induction chemo using high dose ara-c (cytarabine) this is the same that she received in the beginning, the only difference is that she will be getting 10 times as much in half the time. They are also adding 2 other chemo's with this. The round of chemo will be for 5 days, there is a possibility that we will be staying at the RMH at times whenever is possible. After this they will begin the transplant chemo as soon as her numbers rebound. Then sometime shortly after that.....she will be getting not one but 2 cord blood transplants that we found out today is an amazingly 5 out of 6 match!!! God is so good, thank you Lord. Sorry I haven't been posting much but this week has mainly been meetings, labs and a bone marrow biopsy. Please continue to pray specifically and please be understandable is I ask that you not come and visit beings as of right now Heaven is not allowed to be in any public places. We love and miss you all <3

Biopsy and Aspirate Day

Bone Marrow Biopsy and Aspirate.....done. 
Dr. Atkinon had a time an was saying how hard Heavens bones were. 
Also, needle and dressing change...done. 
Only issue is that something is wrong with the top portion of the port, interesting enough, it with give a blood return but won't flush so they are going to try an get some TPA in there to try an breakdown any clog or debree that may be present.
Right now Heaven has ordered Chicken Tenders, Mash Potatoes with Brown Gravy and some Green Beans...this kid is now hungry...lol
Love and miss you all and keep praying specifically. Hope you all have a wonderful Tuesday. :-)
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Quick update on Heaven Nicole, for a while we were thinking that Heavens port line may actually be kinked, well praise the Lord it's not but, there is a clot.....not sure how that happened but they have just put in TPA that will be left in overnight (this will break down the clot) and then, Lord willing, come morning...the clot will be broken down enough to be extracted. Heaven is feeling better now that the thought of a surgery on her port isn't necessary but, now she is a little concerned about this clot. Pray that the TPA will do its job overnight to break it down. Hope you all have a wonderful evening

Day 27

Update on Heaven Nicole, It's been several days since I have updated and well.....things are going great. :) She has had to have a few BT's and a couple PT's but all in all she is doing great. She has gained another pound so right now she is at 114.2 which is good, her appetite is great...she has eaten everything from Pizza to green beans. She even has me walking to 7-11 to get her drummettes and a slurpee. lol. I actually enjoy the walk and the fresh air. 
Tomorrow she will be having the bone marrow biopsy sometime on the morning, so after midnight tonight she can't have anything to eat or drink, also while she is "under" they will be changing her dressing and needles on her port, she actually requested this. Please specifically pray for less than 5% leukemic cells.
Not sure if she will be getting a small break between hospitals but I am going to call Duke Children's to see if she can have at least a few days, as this will give me time to get our clothes cleaned and packed and get all the items we will need when we arrive. Hope you all are enjoying the sun as I see it will be in the upper 60's by the weekend. Amazing. Enjoy :) Love you all ♥ and miss you.

Day 23.....

Update on Heaven Nicole,.....Hope you are all enjoying the new year and may it hold many blessings for us all. haven't posted in a while beings we have been focusing on the more important things. 
Heaven is doing great, Dr.s are still pleased at the way she is progressing, and God is still so good to us. She has had visits from her sister Alexandra V. Haak, B-I-L Aaron Haak and her 2 sweet little neices, and her sister Samantha C Clark. Her SH Milton Moore, his Mom Paula Moore and also his brother Dylan. Her cousins Veronica Doyleand her son Nickolas D Doyle and she is staying very busy when it comes to Milton and Nick visiting.....these two do their best to keep her going and smiling.
Her counts are beginning to look better, her ANC jumped 100 pts. overnight, 8 more days like that and she won't be neutropenic. A positive attitude and outlook and knowing that people love you makes a huge difference.
This morning she surprised me and her Nurse by eating before 11:00 a.m, beings she is definitely is not a breakfast eater (she had 5 chicken drumettes) lol and a slurpee. Afterwards she took a warm soaking bath and all was o.k. until her port dressing loosened from the heat.....well, that meant another dressing change which makes her port area very sore. Before the benadryl kicked in she was working in her school paces and eating KFC, biscuit and some brown gravy. We are so grateful to everyone who is praying, calling, visiting and doing all you can to encourage not only Heaven but us as her parents. Thank you all so much and please keep doing all of the above into 2013. Love to you all and may the Lord continue to bless you all as we are truly blessed to have you all by our sides.
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Brief Update on Heaven Nicole.....Received a call a little after 4 p.m. today from Melody from down at Duke. After what she told me I could have raised off this hospital even though there is 3 floors above us. lol. I was informed that they have found a cord blood match for Heaven...Praise the Lord for He is worthy to be praised!!!!! I will find out more information later on this as soon as it comes in.
I am just overcome with much joy.....for I know that God is the great Physician <3
Please keep those specific prayers a coming. Amen.

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.

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.

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.

THE CHOSEN MOTHERS

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."

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 Lord.....it 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

This just in.....plus 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.
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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.
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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.

 

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

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.