Sunday, January 27, 2013

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, 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 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.

Friday, January 25, 2013

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 :)

Thursday, January 24, 2013

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 .....

Tuesday, January 22, 2013

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. :-)


Thursday, January 17, 2013

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

Tuesday, January 8, 2013

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
Love and miss you all and keep praying specifically. Hope you all have a wonderful Tuesday. :-)


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

Monday, January 7, 2013

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.

Wednesday, January 2, 2013

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.
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.