CHRISTmas time is here.....

Here is a pic of Heaven by the fireplace...sure would like on of these un our house...wait...it would take up an entire wall...lol. Hope you all are having a wonderful day, enjoy the Son and the sun...soak'em both up.

Decorations

Myself and another bone marrow parent redecorated the tree a couple weeks ago...and tonight several volunteers spent a few hours placing and hooking up the village. Really pretty.

Game Night...

Watching Heaven and Zachary play Fas & Furious on the big screen.

Just how Grateful are we?

You think this is just another day in your life? Its not just another day, its the one day that is given to you. Today. Its given to you, it's a gift, it's the only gift that you have right now and the only appropriate response is, gratefulness.
If you do nothing else but to cultivate that response to the great gift that this unique day is, if you learn to respond as if it were the first day in your life and the very last day, then you would have spent this day very well.
Begin by opening your eyes and be surprised that you have eyes that you can open, that incredible array of colors that is constantly offered to us for pure enjoyment. Look at the sky, we so rarely look at the sky. We so rarely look at how different it is from moment to moment, with clouds coming and going. We just think of the weather and not all the many newnesses of the weather, we just think of good weather and bad weather. This day, right now, it's unique weather, may be a kind in an exact form that will never come again. The formation of clouds in the sky will never be the same as it is right now.
Open your eyes, look at that.
Look at the faces of people you meet, each one has an incredible story behind their face. A story that you could never fully fathom, not only their own story but also the story of their ancestors, we all go back so far. And in this present moment on this day all the people you meet, all that life from generations and from so many places around the world, flows together and meets you here like life giving waters if you only open your hearts and drink.
Open your heart to the incredible gift that is given us. You flip a switch and it gives us electricity, you turn on a focet and you get warm water, cold water, drinkable water...thats a gift that millions and millions of people in the world may never experience.
These are just a few of the enormous number of gifts to which you can open your heart. So I wish you that you open your heart to receive all these blessings, and let them flow through you that everyone that you will meet on this day will be blessed by you. Blessed by your eyes, by your smile, by your touch, just by your presence.
Let yor gratefulness overflow into blessing all around you. Then, it will really be a good day.

All because of Jesus.....

Heaven had to get Pentamidine today and afterwards while waiting on the Dr. she kept herself busy with making charms with the rainbow bands. CBC came back looking good...keep the prayers coming. May Christ bless you all.

Hemoglobin...9.3
Platelets.....92
WBC.....5.3
Creatinine...1.2

Glory to God!!!

Had a wonderful trip home.....

We ad a wonderful Thanksgiving at home though it was hard coming back to durham. While driving back I became overwhelmed when we got onto an exit near the hospital, and by the grace of God...a song was playing and the chorus was..."this is where the healing begins"...all I could do was praise and thank Jesus for He is so great to us.

With that said.....

Heaven is really getting into to the Rainbow Loom.....she really likes it. She is almost done with a complete Nativity set made with the small bands. I am glad that she has something good to focus on...thank You Jesus for Your lovingkindness toward us.

Happy Thanksgiving

Thank You Jesus for allowing Heaven Nicole and I to be able to spend our first weekend home this Thanksgiving. We have so much to thank You for. We ask for safe travels, a great visit and enjoy the relaxation of being home.

Thank You Jesus

Couldn't wait for the printout to share the lab counts with you all. Keep praying. I serve a Mighty Saviour and He proves His Love for us daily. Thank You Jesus...so much.

First needle stick since January

2 years gone by.....

2 years ago today Heaven Nicole's journey with Leukemia began. This is a pic of her in the PICU after we were transported to Carilion Roanoke from Franklin Memorial on Nov. 25, 2011.
By Gods grace and his Loving Hand she is doing wonderful today and we will have a wonderful Thanksgiving in Virginia as we get to go on our first weekend visit.
Please continue to pray specifically for Heaven and we thank you all so much for all you have helped us through.
May Christ fill your hearts with joy this Thanksgiving and may you learn to appreciate what you have already been blessed with and if you don'know Christ personally...all you have to do is ask Him into your heart.

Raising funds for Research

Heaven and I are making these bracelets for childhood leukemia awareness. We are selling these bracelets (two designs to choose from) for a donation of $5 (per bracelet) to go to childhood cancer research. Beings childhood cancer is so underfunded. These colors stand for stages of leukemia, the orange is for leukemia, the green is for the bone marrow, stem cell, and cord blood transplants, and the purple stands for a survivor or you can get one in your own custom colors!

Beings Heaven is a two time Leukemia survivor and a Cord Blood Transplant recipient, we are doing this to give back to Carilion Roanoke Childrens Hospital and Duke Childrens Hospital for saving my daughters life and giving her a second chance and also to help kids fighting cancer around the world.
Please message me if you're interested, and if you would like customized colors, and which design you would like.
also, if you'd like, you can pay with a PayPal account the information would be ~ wayneandangela98@gmail.com

**ALL DONATIONS GO TO CHILDHOOD CANCER RESEARCH 100%**

Central Line coming out!!!

Sitting here with Heaven Nicole waiting to be called back as today she is getting her central line removed. Thank You Jesus. She is so happy as this is the 2nd step to being discharged home. Hope you all enjoy this beautiful day that we have been blessed with.

Never ever give up!!!

A must see video.....

This video portrays several children. For the first minute or so you will not hear any sound but you will when the make approaches the pulpit. Hope you are as blessed as we are. Thank you and please continue to pray for Heaven...we hope to be able to visit home in late Nov. for Thanksgiving. Thank You Jesus for loving us so much.

Click link for video.....it may a few moments to load.

http://www.ustream.tv/channel/ronald-mcdonald-durham

Under the weather...

In clinic today with Heaven Nicole...she isn't feeling to sporty, so she could use some prayers right now. Waiting on labs and Dr.s to come in.

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