Prayers needed

[Rkem109r08]

prayers sent

[Slimreefy]

Prayers sent.

[Gsxrrobb]

Prayers sent bro. I hate to see a child that age, or any age, with a disease like that. The wife of a guy I work with baby sits a small boy, about 2 years old, that has Wilm's disease. We've had a charity golf event for them and a couple charity bike rides. He's been getting treatments for several months now but is pulling through it slowly. And it had spread to his lungs but they can only treat one area at a time.

I hope and pray Leah pulls through the leukemia the same as she did the Wilm's disease.

Leah's First Battle as you may have read was with Wilm's Desease. It was a long road for that little angel. She made it through and on Dec. 18th 2009 as I was boarding a plane for Afghanistan I got a call that she was cancer free. It was the best news that I could get before getting on that plane. I know for my sister it was a great relief but for me hearing that news at that very moment gave me the positive energy that I needed to come out here and get after it. When I came home for R&R It was great to see Leah she was healthy and full of life and energy. I am still in shock that just days before I would return we would get this news That she is now facing this battle with Leukemia. Only 6 yrs old and now facing her second battle with cancer!

All of your well wishes and prayers mean soo much..please keep them coming1

[Rider 4 Life]

That's great news.

[BigMike42]

Prayers sent for you and your family.

[Gsxrrobb]

That's great news.

Leah has just started her second fight with cancer...she has a long road ahead. Please keep her in your prayers Bro we have a long road to go.

[rnspark]

Prayers sent for this brave little girl

[cea109]

Prayers on the way!!!!

Sent from my Galaxy S3

[rexx28]

Prayers sent by the power of Jesus name, healing!

[Gsxrrobb]

I just received this email from my sister and I know that some of you are following Leah's battle and I wanted to share this update with you all. We face a long road ahead and your prayers mean everything to our little Angel. The email is long but it gives you an idea of how this disease is fought. Thanks again for all your thoughts and prayers.



Family and Friends,


Yin and Yang: two primal opposing but complementary forces found in all things in the universe.


One cannot exist without the other.


Yesterday afternoon Alvin and I met with a member of the BMT team for what has become the most intense hour of our life. As I sit here writing this entry, I am still trying to process everything I learned. The BMT team received the results of Leah’s bone marrow type. I wish it was as easy to say, “We found a match and everything will be okay.” But that is simply not the case. Our options were placed before us. However, each option presents complexities of enormous and diverse proportions. All of which is supported on a foundation of fine sand. There are no margins for error.

The search


Bone Marrow: Earlier I wrote earlier of the strict guidelines governing the bone marrow transplant process. A number to keep in mind is 8/8. There are 8 genetic markers that determine the best match. A potential donor is identified based on how many of those 8 markers are matched to the patient. The goal is to find a donor that matches all 8 markers, however 7/8 and 6/8 are also considered but those matches will be outranked if an 8/8 is found and available. If the 8/8 potential donor is not available (due to death, pregnancy, health, etc), then the team will seek the potential donor starting with the next ones in line, 7/8, then 6/8. The availability of those potential donors will also be determined. An adult marrow donor is the best for a child patient because of the amount of an adult can give to a child. The seek/locate/commit donor process can take up to 2-3 months. The bone marrow donor is the best chance for a leukemia patient.


Cord blood: Genetic marker matching is done also the same way for cord blood donors hoping for an 8/8 match. A 7/8, 6/8, or 5/8 is considered as viable due to the naïve nature of cord blood cells – they will follow the body’s directions more easily and change into what the body needs. (“His divine power has given us everything we need for life and godliness.” 2 Peter 1:3) Cord blood is readily available since recent mothers donate and store their cord blood in donor banks. However, there are less cord blood cells available because the donor source (placenta from a newborn baby) is small.


The process


Bone Marrow: Once a decision is made for a marrow transplant, the donor decides on how he/she will donate. The donor has two options, one more invasive than the other. A bone marrow biopsy can be done on the donor to extract marrow from the donor’s hip while the donor is under sedation. The patient then receives the marrow via infusion (like receiving blood). The patient’s recovery is long (several weeks), and the donor’s recovery is short (2 days). The other option a donor can make is to harvest the marrow via medication, then draw his/her blood from the arm and give the patient by infusion. There is no pain involved for either and the recovery time for the donor is minimal. The recovery time for the patient is also minimal but there is an enormous risk for the donor’s T-cells to attack the patient’s organs. Both procedures occur in a very small time frame, meaning the donor provides the marrow and patient receives it in less than 24 hours.


Cord blood: The patient can receive cord blood in less time however the likelihood of complications such as rejection is also present. and 6/8 are also considered but those matches will be outranked if an 8/8 is found an


Patient preparation


Leah will have another bone marrow biopsy in a week or so to determine how well she has responded to the chemotherapy she had early in July. It will be determined at that time if she needs another round and/or there is a marrow ready for her. All I will say at this time is, when Leah is getting ready to receive a marrow/cord blood she will undergo a most strict preparation. I pray that I am ready. “The LORD is my light and my salvation-- whom shall I fear?” Psalm 27:1


Recovery


Graft vs. host: Immune cells (white blood cells) in the donor tissue (the graft) can very likely recognize the patient (the host) as "foreign". The transplanted immune cells then attack the host’s body cells. In this case, the host’s organs are at high risk. This battle can also go the other way, where the host cells can attack the graft cells. Either battle results in huge losses for the patient.


Matchmaking


Leah’s marrow has been checked with the national registry. One 8/8 potential donor has been identified, and several other potential donors at 7/8 and 6/8. Please pray that the 8/8 potential donor is available and willing to walk this course for Leah. “And without faith it is impossible to please Him, for he who comes to God must believe that He is and that He is a rewarder of those who seek Him.” Hebrews 11:16


Several cord blood matches have been identified as well. The BMT team has placed marrow donation (8/8, 7/8, 6/ before cord blood consideration.


Alvin and I cannot stress enough for CONTINUED focus to overflow the bone marrow registry!!!! If Leah’s matches are not available, the BMT team will look again in 1-2 months for a match. Time is of the essence. Please continue to send friends and family to www.bethematch.com . Don’t stop telling people about Leah.


I am beyond gratitude at the turnout at Marietta High School yesterday. Mrs. Colburn told me that an estimated 150 people showed up and the Be The Match team was shocked. There will be more opportunities for bone marrow donations and that information will come your way soon.


Track record


There has been just 4 cases at CHOA like Leah’s, meaning four children have been treated for AML because they developed leukemia due to previous treatment. All 4 children had a solid tumor like Leah, however none were Wilms. Two children survived transplant.


“Jesus replied, ‘I tell you the truth, if you have faith as small as a mustard seed and do not doubt, not only can you do what was done to the fig tree, but also you can say to this mountain, 'Go, throw yourself into the sea,' and it will be done.” Matthew 21:21


Rona

[Gsxrrobb]

Bone Marrow Donor Drive and Motorcycle RideAugust 25, 2012


To help My niece Leah and other children with cancer, in partnersip with Be The Match organization, we are having a cancer awareness and bone marrow donor registration drive on August 25, 2012. There will also be a motorcycle ride afterwards. The donation drive location, and motorcycle ride start point will be at Marietta High School, 1171 Whitlock Avenue, Marietta, GA 30064.
The donor registration period will be from 10 am to 1 pm, in the cafeteria and adjacent parking lot.
The ride will commence at 2 pm. The end point of the ride is Stone Mountain Harley Davidson, 900 Dogwood Drive, Conyers, GA 30012.
Whether you come by car, motorcycle, or by foot, please come out and support this event. Monetary donations are welcome. Thank you!

[Turboman]

I'll keep her in my prayers! And I'm already a registered bone marrow donor! Come on guys it is a PAINLESS procedure of giving a small bit of blood.

Hey guys,

Some of you know that I am in Afghanistan. Just recently I was back home on a much needed break and i was surprised when my twin sister and niece drove down to visit with me and my family. It was a great visit and several weeks later I would be heading back to the sandbox. Days before this would happen I received a call from my sister with not so good news. My niece who had survived Wilms disease (cancer of the Kidney) at the age of 3 had just been diagnosed with Leukemia....Getting on the plane to head back out here was one of the toughest decisions that I have had to make. Below is the story of my Fighting Angel. Please take the time to read it. I ask you to do two things, please keep her in your prayers and if you are able please register with http://marrow.org/Home.aspx you may be the one that could save a life.

Please read my fighting Angels' story

http://mdjonline.com/bookmark/195135...AYIf1.facebook

[lostrider]

Wow, That is for sure a tough road for such a young girl. But I do believe that God never gives you more than you can handle. With that said, I would say that not only is this youg lady tuff as nails but she is a fighter and a inspiration to those around her. I am sure her family and friends support system is a rock solid one as well. She will once again take on this disease and beat it down with her courage and killer smile. She deserves a bright future and with our prayers and her fighting ways she will have one. Prayers for a speedy and full recovery.

[Boudreaux]

Sending Prayers !!!!! We know they work!!!
Kenny B!!!

[prwelder64]

We are also having a benefit for a friend of mine on aug 25 in copperas cove be a match will be at the location and we will pray that between these two meets that a 8/8 donor will occur for both of them. Thanks for Sharing your story bro
Luis

[TORQ]

Sent from New Hampshire.

[rexx28]

Prayers sent in the Power of Jesus name!

[MainEvent]

Prayers sent to you and your family during these trying times...

[cougrdad]

prayers,best wishes to little miss leah

[Gsxrrobb]

Leah says thank you

http://www.youtube.com/watch?v=oknoV...&feature=share

[jhorsf]

What a lovely little girl Rob and so grown up for her age, all of you that qualify PLEASE get on the bone marrow donor list

[Gsxrrobb]

Family and Friends,
“Have you ever danced with the devil in the pale moonlight?” – The Joker (Batman)
Sleep has been a far away memory. To say that the last 3 weeks have been hard for Leah would be a gross understatement. I watch her labor tirelessly for relief each hour of each day. Step one strep viridans…fever fit…left foot tap mucositis…fever fit…kick-ball-change pancreatitis…fever fit…double turn BK virus…fever fit…heel-toe severe platelet allergic reaction…fever fit!! Then I remembered the Batman movie when the Joker thought he had defeated Batman only to find that Batman had fooled him into thinking he was down and out. Then low and behold it was the Joker who had misstep!
“You turned my wailing into dancing; you removed my sackcloth and clothed me with joy.” Psalm 30:11
My constant prayer begins always with a generous amount of thanks, and these past weeks for relief. I see my prayers answered each day as Leah slowly recovers from each misstep. Her WBC count is still low though she has felt better the last few days. The doctors said that would happen, kids feel great before it shows in the blood work - adults are the opposite.
Within all that has happened over the last 3 weeks, God has shown us that there is no other god. (Isaiah 44:6) We have confirmation for the bone marrow transplant. We learned that the 8/8 donor is actually a 7/8 and the mismatch occurs on just one allele. (This means that the donor is really a 7.98453…closer to an 8 than a 7 - a very, very good match). The donor is a woman between 40-42 years old and when she learned that a 7-year-old girl needs her marrow she committed herself to give Leah “whatever she needs” which means that the donor will undergo sedation and give bone marrow from her hip. May God bless this woman! Alvin and I are overwhelmed with appreciation and gratitude. “For surely, O LORD, you bless the righteous; you surround them with your favor as with a shield.” Psalm 5:12
Our dates for the BMT are as follows: October 9 and 10 are preliminary dates for tests and more tests; October 16 is a long meeting with the team to sign the numerous consent documents. Leah will be admitted on October 23 for BMT chemo prep which will entail a most rigorous treatment plan (not near what we’ve had and we have been warned) and we ask for fervent prayers to see her through that time. Then a new birth-day is scheduled for Leah on November 1 when she will receive the bone marrow transplant. I was happy to know that the transplant will occur on All Saints Day - the day on which Catholics celebrate all the saints, known and unknown. The feast of All Saints inspires us with tremendous hope. “Now faith is the assurance of things hoped for, the conviction of things not seen.” Hebrews 11:1
I also learned that a good friend has been “called” to donate her marrow. I met Tammy Shadd when we were both doctoral candidates at the University of Southern Mississippi. She and I became a part of a small group of close friends in those short years and have remained in touch since. Dr. Shadd contacted me last week to encourage me in my care for Leah and she told me that she would be making the journey to Charleston, South Carolina today to start the process to donate her marrow to a 17-year-old international recipient. Oh how my heart was overjoyed to hear Tammy’s words! There was no doubt in her mind that she would give her marrow once asked but there was hesitation after further tests were done on Tammy’s blood due to a minor bone issue – plantar fasciitis. Well knowing Tammy, she very quickly went above and beyond to get her doctors to provide documentation to prove that her condition was in remission so that she could be able to walk the path to meet this young lady in her medical battle. The National Bone Marrow registry “relented” (Tammy’s word) and the healing process starts today. It is not known whether Tammy will ever meet this young patient, but what I know is that Tammy’s spirit of faith has already touched and knows this child. “For by grace you have been saved through faith. And this is not your own doing; it is the gift of God.” Ephesians 2:8
Please help us create a wonderful surprise for Leah TODAY by calling the toll-free number below with a warm greeting and a special memory! Our deadline is Oct 20, 2012. Please call today! Just think of it as a toast – a funny story, a shared memory or a favorite quote. Mention your name at the beginning so that we know who is speaking. It's easy and Leah will love hearing from you. After everyone has called in, I'll arrange the messages into a playlist or “VoiceQuilt”. Then, I'll present it to Leah in a keepsake.
Leaving a message on a VoiceQuilt is easy – just follow these steps:
1. Call 1-877-OurQuilt (1-877-687-7845) (see http://voicequilt.com/overseas if calling from outside the US)
2. When asked for your invitation number, enter 184500.
3. Record your message, just as if you were leaving a voicemail. Press # to review your message – or just hang up to save it
For message ideas, see the Thought Starters at http://voicequilt.com/inspireme
Thank you for all your prayers and actions. It is a major reason I am able to be the mother Leah needs. (Thank you, Denice, for providing the updates when I could not “study” enough to create logical thoughts on the keyboard.)
Our attitudes remain positive and I constantly maintain a peaceful environment in Leah's room. The nurses comment on the atmosphere in the room and are sure to let me know that they wish every room was like Leah's room. I want to believe that the other children here are in loving, peaceful environments. Every child deserves the absolutely best care.
“The moment a child is born, the mother is also born. She never existed before. The woman existed, but the mother, never. A mother is something absolutely new.” Bhagwan Shree Rajneesh
Rona

[Dommy]

Prayers from Italy sent

[hibern8r]

God bless you and your entire family!!!

[SilverFox]

Prayers sent Brother.......

[DarkHorse9825]

I know the pain of having family members stricken with that awful disease. My thoughts and prayers are with a beautiful girl and her family.

[rynosback]

I will keep her and your family in my thoughts.

[Kands]

Dear GSXRROBB,

Will you please send me Leah's e-mai? My daughter, Leah, is a Cancer survivor, and I so want my daughter to contact this precious girl. She will do it, she has never forgotten what it was like all those long nights there at U of M Hospital (Mott's Children's Hospital). If you PM me, I will get my daughter in touch with her. Kindred Spirits. God saw to it that my baby survived, He will see to it with yours. I pray for her, and will continue to.

[TORQ]

prayers sent from NH.

[Gsxrrobb]

I know some of you are following my families journey...here is Leah's latest update written by my twin, Leah's Mom.

Posted 17 hours ago
Family and Friends,
I prayed this week and the word I received was ABUNDANCE!
Thank you for your continued and generous prayers and support for Leah and my family. This past week has offered leaps and bounds for Leah. So much so, I anticipate we will be able to get back home for a few days until we have to return for the transplant process on October 23.
On Thursday, Leah was able to walk out to the hospital garden on her own (no wheelchair required). She had had a bone marrow aspiration early that morning and when she found out there would be a carnival she asked if she could attend. She and I prepared for the outing with masks, head covering, and hand/skin sanitizers. When she got outside she was beside herself to just be out of the room! Her favorite activity was the bubble-man. I stood back and watched her revel in trying the different bubble making maneuvers. We stayed outside for a good 30 minutes in the sun moving around trying to make the biggest bubble ever created. She returned to the room exhausted but so very, very happy.
In preparation for the transplant, Leah and I have talked at length about things that may happen that are unusual, painful, and otherwise upsetting. It was important for us to talk about the realities of the situation and remind ourselves that we have a home waiting for us when Leah is all healed. We talked about our home and then looked at a picture of our house sent to us by our neighbors. It’s been 5 weeks since we left home. Simply looking at and talking about our house, we understood just how far we have reached outside our comfort zone, and anticipate with hope the unknown ahead of us. “In the morning, Lord, you hear my voice; in the morning I lay my requests before you and wait expectantly.” Psalm 5:3
Researchers have found that children tend to navigate their comfort zones better than adults. In other words, children are very adaptable and can adjust to changing comfort zones with ease. They are able to daydream their way out of uncomfortable situations and self-fulfill their daydreams. Adults on the other hand are trapped in their social prejudice and find it difficult to adapt. On July 17, this concept became real for me. It has definitely not been easy for me to adapt to seeing Leah on a feeding tube or needing morphine (an ultimately methadone) or even the awful side-effects of all the chemotherapy. There is NO comfort in those things. My sole comfort is my faith that tells me the doctors, nurses, and their medicines are working to heal Leah.
One night in particular, Leah had a very high fever and her nurse came in and ‘iced” the room. The thermostat was literally set to “ICE”. I, in turn, put on 4 shirts, a hoodie, two pair of socks, a scarf, and went under several blankets. The nurse returned and apologized for icing the room. I told her that I am the healthy adult and so I must cope without protests. My comfort was not my (or their) concern. What the nurse did was for Leah. The medical demands, requirements, encouragements, suggestions given are for Leah’s well-being. I will jump through the eye of the needle ten times more than asked if you tell me it will heal her. For her, I have to face the things that are uncomfortable. She has done more than that in her short life span.
Just this week the hospital instituted visitor restrictions to those above 12 years old and having no symptoms of illness. The bone marrow team met with Alvin and me as well to ensure that we understand this to mean that visitors at the hospital and home must be persons older than 12, having no symptoms of illness AND having had a flu shot. A healthy person can be infected with the flu virus and not show symptoms for 72 hours, in that time they are contagious. We sometimes forget that the flu can be fatal in healthy people. Due to Leah’s immuno-compromised condition, we are following the medical direction to restrict visitors to those requirements until she is off isolation which could be months from now. Medical circumstances aside, I have considered how many family and friends Leah (and I) will miss while on isolation who will find it difficult to step outside their comfort zone to get a flu shot. Respect this: Leah is ordered to step out of her comfort zone with each medical encounter. She does it with grace. I follow her lead.
“In humility value others above yourselves.” Philippians 2:3
Leah started her First Penance and First Communion lessons with Mrs. Goins this week. What a great time she had! We both look forward to her First Penance in February then joining her friends for First Communion in May. Her nightly prayer now is one she learned to remember the Gospels:
“Matthew, Mark, Luke, and John
Guard the bed that I lie on
Four corners to my bed
Four angels round my head
One to watch and one to pray
And two to bear my soul away”
Amen.
Ron