Daily excercise

This is Heaven doing her daily excercise going down and coming back up 18 steps...we are so proud of how hard she is working to get better.

Yay!!!...I can eat mushrooms

Haven't made Goulosh in over 2 1/2 yrs. as Heaven Nicole has been unable to eat certain foods. Well today she asked about cream of mushroom soup ( beings it is a main ingredient) and Dr. Driscoll said she could have c.o.m.soup. Let me tell ya...she was happy to hear that. Can't wsit to see her reaction when he tells her she can have grapes. LoL. Love my Heaven. <3

9 months

Just sitting here thinking and thankig God for how far He has brought Heaven. Today marks 9 months that we have been at Duke Childrens with a combined total of 7 months of Heaven being in- patient and 2 months so far out-patient. God has brought Heaven through so much and I thank and praise Him daily. We thank all our family and friends for setting time aside to pray for Heaven and we ask that you continue.
Wow...9 months, away from all we knew, away from family, friends, church, reunions.....God is awesome, for without Him...Heaven and I would have gave in a long time ago...I just want to thank God for giving the Dr.s here the wisdom that they have to help the children. Heaven has been blessed with the most awesome Dr.s ever..... Dr. Edwards, Dr. Atkinson & Dr. Fisher
(Roanoke) Dr. Driscoll, Dr. Martin, Dr. Prassad, Dr. Parek & Dr. Page (Duke Childrens) these Dr.s have been nothing short of a blessing to our family with giving their all to help Heaven get better. We ask that you all continue to pray for these Dr.s as they give so much for the children.
Again, thank You Jesus for being our Rock and for giving us strength.....thank You.

"Changing the world is really not as tough as it seems.Just takes a little effort and a whole lot of happy. 
The world will not change with a wish or a wand.No abra-kadabra or shooting star.
Some may think it takes a miracle or magic but ...I have something to say that might clear the static. 
I have dreamed a dream of something improbable because to me, in life, there is nothing but possible. 
The answer really is no secret to keep;you just need to be kind to each soul that you meet.
A task that takes just courage,you see a gut full of gumption and brain that believes.
It is a heart full of hope and a hand that can help.To deliver such kindness that may have never been felt.
So do what you can, no matter how small.\Stand up for what is good and stand 100 feet tall.
Paint a picture, hold a door, give a nickel or give more. 
Give a stranger a cup of joe or donate your old winter coat. 
Do these acts at random and I bet you’ll find,that you are making a difference each and every time. 
So tell me friend, have I convinced you why,that making a difference is as easy as pie
Maybe I should remind you this life isn’t all about “me”There is more to this life, a reason for existing. 
So be fearless, be fierce and maybe a little insane. Now do something rad and watch the world change. (Madison Steiner)

I REALIZE IT HAS BEEN A LONG WHILE SINCE I HAVE POSTED TO THE BLOG.....FORGIVE ME, I WILL TRY HARDER TO KEEP THIS BLOG UP TO DATE.

As a few of you know...Heaven has been in the hospital here since last Monday. She is doing great, but keep the prayers coming. Last Monday her nose started bleeding and we couldnt get it stopped, so we call Dr. Driscoll and he told us to head on up to 5200 (PBM Floor). It took just over 4 hours and 2 platlet transfusions to get her nose to stop bleeding, then the ENT was contacted and for the 5th time another part of her nose was carterized. After that she received 2 blood transfusions. Also, Dr. Prasad and Driscoll wanted her to stay overnight so the couls also check her fingers as she has had a bad infection in 5 of her fingers which was vaused by the chemo, which made her lose her fingernails, and when the new nails were growing in she was literally gettin in-grown nails on her fingers as you would your toes. So she was started on two intibiotics and also a very strong viral med as they want all if this to get gone while covering all areas. So with all that said...we ask that you keep praying as we hope to be out of here and back to the RMH by Wednesday. Love you all may may you all enjoy this beautiful day.

Today's total days we have been here is 243
Post- Transplant is 168 — at Duke University Medical Center.

I LOVE YOU HEAVEN NICOLE

YOUR MY HERO

My Daughter, My Friend, My Hero

A picture may be worth a thousand words...but this one out does them all.

A blessed week and a busy day

Update on Heaven.....Again I would like to thank my Lord and Saviour Jesus Christ for the Engraftment that took place on May 15th.....thank You Jesus!!!
This week we have had really good white counts...Mon. 4.5, Tues. 5.3, Wed. 6.3, and today it was 8.9.....Amen!!!
Although today Heaven woke up nauseated from a couple meds the docs are using trying to get the BK Virus in her bladder to subside, Dr. Rael ordered a CBC to make sure of no infections. So the CBC came back clear but Heaven needed a blood and platelet transfusion...as her RN for today was flushing one of the lines, it popped just like a balloon and made a quick hissing sound.
The RN asked if I had a clamp and thank God I did as we clamped it off to keep anything from getting in there to cause infection. Heaven got a little upset as the first thought was that she would have to have surgery to replace the line but Dr. Martin came to the rescue as he has repaired more than 25 of these line over the years.
So, the line was repaired, all meds and blood products had to be stopped for 4 hours, so now her pole (aka Slim Jim) is out getting a line change so that we can start the Vancomyacin at 4:00 just as an added precaution...so at 6:00 she will be getting 2 blood and 1 platelet transfusion plus all her other meds that has had to be put on hold. Bless her heart she is so tired from all commotion but is resting well now.
Please continue to pray for grafts vs. leukemia, the grafts vs host to fade away for good (Dr. Driscoll was pleased with how the gvh looked yesterday) and for her to continue to get healthier with each passing day. Love and miss you all. Hugs from Durham xoxoxo

There will be showers of blessings......

The name of the song title tells it all....God is so good to us all, all the time.....


Update on Heaven Nicole.....Last night at midnight Heavens white cell count came back at 1.8 with an ANC of 820.....then this morning we received news that today is her 1st day of engraftment!!! Praise the Lord for He has been so good to us.

We still need everyone to pray for grafts vs. leukemia, the grafts vs. host to fade and go away, for a successful engraftment and also when she has 3 days of an ANC of 500 and above and a good WBC count the Dr's will make me an appointment to get my central line removed.

Heaven has been such a strong trooper through all this, as come tomorrow we have been her for 4 months and she has been confined to her room for 3 and a half months.....but the wonderful thing is, we can still look at each other, say "I love you" and know that we can still count on each other for strength.

I have to praise my Lord and Saviour Jesus Christ for had it not been for Him, none of this would be possible. I thank Him for guiding the Dr's to find a plan, I thank Him for the wonderful group of RN's that has worked with Heaven tirelessly to keep her encouraged and positive. I thank Him for this opportunity to bring her down to Duke Childrens (for there are some that can't get here that needs to), I thank Him for our insurance company (Cigna) wow have they been such a blessing, I thank Him for our family...even though the road was rough, we hung in there and leaned on each other, I thank Him for our friends who have been the silent watchers waiting for the right time to call to give a word of encouragement or just an ear to listen, I thank everyone (family, friends and those we may never meet on this side) for all the prayers as they mean so much to us, for the calls as all of you called at just the right time, for listening when we needed to cry and not being afraid to speak with compassion, for being there whenever I called, mainly, for just being there when you were needed.

We pray that the abundance of love that flows from the Throne of heaven to be gracefully poured upon all who have been with us through this journey.....though we aren't finished just yet, we are now seeing the light at the end of the tunnel.

"Thy Word is a lamp unto my feet and a light unto my path"

"Call unto me and I will answer thee and i will show thee great and mighty things which thou knowest not"

"I can do ALL things through Christ which strengteneth me"

"A merry heart doeth good like a medicine"

These are just a few of the Word of God that has helped us through, there are many, many more. Again, I say "THANK YOU Jesus for such a wonderful blessing and THANK YOU to everyone else for all you fervent prayers, calls, cards, gifts and just those simple hello's that we received...we love you all and you all mean so much to us. <3

Sorry for the delayed update

Sorry for not posting for a while but things have been sort of a little rollercoaster ride...anyways Heaven Nicole had her double cord blood transplant on April 1st. Since then the wbc has been up and down due to the fact that she is dealing with some rough mucasitis and thrush in her mouth and throat. I haven't been able to donate my granulacytes to help with this being my hemoglobin has been under 10 but as of today I was able to give so she received my grans today and will also get some tomorrow and Sunday, Lord willing that will help her mouth and throat ordeal to heal up a bit quicker. She does have some Grafts vs. Host but it is confined to about 5% of her body and the Dr.s are keeping an eye on that as well. I have one gel and one cream that has to be applied twice a day each and also a cream to apply to her face and neck as well.
Her wbc has been holding at 0.2 and the Dr. says that it is due to the cells trying to help heal her mouth up so we ask everyone to please specifically pray for her mouth and throat to heal, her wbc to increase to a normal level so she can engraft (her wbc will have to hold at 0.5 or 0.8 with an ANC of 500 for 3 days) and for successful engraftment.
As of today we have been here at Duke PBMT Unit for 3 months and 12 days. It has been extremely hard at times but we do our best to make the best of everything. Heaven is ready for engraftment to take place so she can get out of here and to the Ronald McDonald House so she can feel more like she is at home.
We are just asking that you all continue praying so that all will go well and we can move out of her soon. Love and miss you all and we thank you all for everything you all have done for us. We are truly grateful. <3

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.