WONDERFUL NEWS ABOUT BONE MARROW TRANSPLANT FOR JADEN!!!

The Doc said that Jaden has "a lower PH Chromosome level in his bone marrow than in his blood..." He went on to say, "There is not an explanation for this, and I have never seen this before!" I told him, "Well, you know our Jaden... always surprising us with doing the opposite of what is expected! LOL!" Also, God is bigger than this cancer... and with all the prayers that Jaden is getting... God is working here!!! He agreed! So, I have been talking with Doctors all day, and this is a real blessing... No chemo right now... just what he is already on with Maintenance chemo. Praying for no RELAPSE, as the Doc said, "Jaden is a TICKING-TIME-BOMB" and he won't respond well if he relapses fully now." =( GOOD NEWS is that We have 7 potential matches... and Alex is doing the swab test in the next 24 hours. Hopefully she is a match, and she will be able to supply his new bone marrow. She is a 1/2 sibling, and the best chance of a good transplant. None of us are a match. We did have potential matches last time, but none were compatable... so please pray that the add testing required for the potential matches will be a "REAL MATCH"!! PRAISE GOD!!!! Looks like we will be going straight to a bone marrow transplant mid Jan. Jaden will be in-hosp for 4 to 6 weeks, and then in the Transplant room at the Ronald McDonald house for 100+ days after... wow! As I said to a friend earlier, "Maybe, just maybe... if Jaden can pull through we can have a "normal" life again???? I pray that this is true for Jaden, he is so brave... and I am so proud of him!!!" THANK YOU FOR ALL YOUR PRAYERS, AND SUPPORT!!! KEEP PRAYING PLEASE????!!!~ Heath & kids xoxoox

Jaden is now reading this book... do you like it?

Jaden picked this up the other night at Wally-world, and asked if he could have this book. How could I say no... :(

A wonderful "MUSIC MAN" has passed, R.I.P. Tom Roady!

THANK YOU; TOM ROADY, FOR SUPPORTING THE F.O.E. #3423 DIABETES RESEARCH BENEFIT WITH JADEN BACK IN JUNE, 2009. MAY GOD LIFT YOU ON HIGH, AND MAY HE BLESS YOU RICHLY FOR ALL THE BLESSINGS THAT YOU GAVE HERE ON EARTH. YOU WILL BE MISSED... MAY YOUR EVER BE INTERTWINED IN HARMONY WITH OUR LORD IN HEAVEN! WITH MUCH LOVE~ Heather & the kids XOXOOXOXOX

UPDATE ON JADEN, PLEASE DONATE TODAY!!!!

Doc said, "Jaden is a TICKING TIME BOMB!" :( Jaden's Chromo levels are up, and the meds are not working. The new meds won't work either... so on Dec 7th he will go in for a spinal tap, spinal chemo, a bone marrow biopsies, they will put in a Hickman Port-a-cath for a bone marrow transplant & a re-induction Chemo treatment to start ASAP! He will then start testing on his organs, in order to see if he can go through a transplant. The Doc said he needs to have one by Feb./March at the latest... WE NEED A MATCH! PLEASE PRAY, AND ANYONE WHO WANTS TO DONATE BONE MARROW PLEASE GO TO WWW.BONEMARROW.ORG
Thank you & God bless!~ Heath, Jaden, & Alaina Rae' xooxoxooxox

Brown Mackie Bone Marrow Awareness Drive with Jaden

PLEASE HELP RAISE $$ FOR BONE MARROW TRANSPLANTS TODAY!!!

To become a donor it just takes a small vial of blood or swab of cheek cells to be typed as a bone marrow/stem cell donor. There are many patients who are desperately waiting to find a donor match. You may be able to save someone’s life. There are donor registry sites throughout the country.

You must be between the ages of 18 and 60 and in general good health. You should be committed to helping any patient. A simple blood test or cheek cell swab that is given through an authorized National Marrow Donor Program Donor Center or Recruitment Group is needed to obtain your HLA tissue type so it can be entered into the National Registry. You will have to complete a short health questionnaire and sign a form stating that you understand what it means to be listed in the Registry.

The cost for HLA tissue typing ranges from $45 to $96 depending on the Donor Center, the level of testing performed, and the laboratory that analyzes the test results. There may be funding available to offset this cost through the Donor Center. After the initial testing, all medical expenses are covered by the recipient or the recipient’s insurance. Please contact your local Donor Center for further information.

To find out more information and to become a donor:

DKMS Registry
1-866-340-3567
www.dkmsamericas.org

The National Marrow Donor Program
1-800-654-1247
www.marrow.org

The American Bone Marrow Donor Registry
1-800-745-2452
www.abmdr.org

The Gift of Life
1-800-9MARROW
www.giftoflife.org

The Icla da Silva Foundation, Inc.
Helping Children and Adults with Leukemia
(866) FDN-ICLA
www.icla.org


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Umbilical Cord Blood Banking

Every 15 minutes, someone in the United States is diagnosed with a medical condition (over 35,000 people a year) such as leukemia, anemia’s, myelodysplastic disorders and other life-threatening diseases that require treatment with bone marrow/stem cell transplants. Nearly 70 percent of these patients must rely on an unrelated donor to offer them this precious gift of life. Unfortunately, many patients who are in need of a bone marrow/stem cell transplant cannot find a suitable donor - no relatives that match and no match among volunteer donors.

Fortunately, there is an alternative that has been researched and is now proving to be a good option for many of these patients—stem cells from a newborn’s placental and umbilical cord blood. A newborn’s umbilical cord and placenta contains stem cells that are the building blocks for mature blood and immune system cells. Umbilical cord blood is collected at the time of birth under controlled conditions, shipped to a blood bank where it is tested, typed and stored.

Two studies published in The New England Journal of Medicine, Volume 351:2276-285 and an editorial by Miguel A. Sanz, M.D., Ph.D. in the same issue, concluded that cord blood should be considered as an acceptable source of stem cells in the absence of a matched bone marrow donor. For many gravely ill patients (who do not have an available donor who is a match), the immediate availability of typed cord blood units is a compelling reason for its use. And for ethnic minorities, who may have unique combinations of HLA types, the chances of finding a donor match with cord blood is greater than from the existing bone marrow donor pool.

If you have a family history of certain diseases you might choose to save your baby’s cord blood with a private bank. Alternatively, you can donate the cord blood to a public bank. The Bone Marrow Foundation encourages you to direct any questions you have concerning the use and storage of cord blood to your physician or other appropriate health care professional. The following are further resources for more information on public and private banking:



Public Banking
National Marrow Donor Program
1-800-654-1247
www.marrow.org

National Cord Blood Program
New York Blood Center
310 East 67th Street
New York, NY 10021
1-866- 767-NCBP (6227)
www.nationalcordbloodprogram.org

Parent’s Guide to Cord Blood Banking
www.parentsguidecordblood.org

SOMETHING ABOUT A "SPECIAL NEEDS" CHILD...

Take the time to meet our children, and take the time to know us:

Lauren (McCune Albright Syndrome), Jaden (Autism, type 1 diabetes, & leukemia), Alaina (dyslexia), and Josh (Autism)… all these children are wonderful & a blessing to us "SPECIAL NEEDS" Families!

I am the parent of a “SPECIAL NEEDS” child. I was overwhelmed, confused, heart broken and struggling to unravel the complexities before me.

Please do not pass judgment of me without knowing why I did not attend homeschooler meetings, charity breakfasts, or community picnics. Please take a few minutes to understand why I did not take you up on your offer to have lunch, or grab a cup of coffee. I love to participate in “Mom’s out” functions, but often have no time for myself.

I was/am in survival mode to keep my family in tact, and to give my child the best quality of life possible.

I was/am presented with parental decisions that have torn me apart, and kept me up more nights than I can possibly remember!

I had/have spent most days of the week at therapy and doctors appointments… and most nights up researching treatments and medication options. My closest friends with special needs kids know just what I mean, as we are often online together at 3am. ;p

I was/am forced into isolation at times due to the stigma and misconceptions that are epidemic in our society. You would be surprised how many people move away from a child like ours in a pool, or at a public event. What a shame, some people will never know how wonderful & truly blessed they would be by knowing our special needs child… he is so very wonderful in God’s eyes!

I became proficient at prioritizing my life, and learning to let the little things go. I learned to look at others with compassion, instead of tabloid material. Best of all, I learned to turn a blind eye to the stares or ignorant comments!
I did the best I could… I helped my special needs child be the best that “he” could be!
I survived!

I am one of the lucky ones, my child has blossomed and has exceeded all our expectations. PRAISE THE LORD!!!

I have now become strong, I have become confident, and I have become a fierce advocate for parents of special needs children. The growth did not come without many painful & tearful nights, but it did come eventually.
So I ask you, please….

The next time you see a parent struggling with a raging child, a confused child, a child making odd movements or sounds, a child that seems to be in a world of their own… BE KIND, Give the parent a smile of recognition to show that you understand what they are going through. Ask if there is anything you can do to help, or offer for them to go ahead of you on line.

The next time you have a birthday party for your child remember that their child has a hard time with a lot of sensory issues (Loud noises) and social situations (groups of people). Please send their child that invitation, and know that more times than not they will not be able to attend… but appreciate being included. Understand that in order for their child to go to the party the parent may need to stay for a little while with that child, and please make them feel welcome. When they let you know that their child cannot make the party, consider inviting that child for a one on one play date at the park instead.

The next time you are grading homework papers please understand that their child struggles, some with learning disabilities others with the exhaustion of their disorders or the obsession with perfectionism. The Perfectionism is not necessarily to have the answers right but to have it “feel” right for them. They have spent hours doing what most can do in ten minutes. A paper returned with red circles and comments only hurts a child’s self esteem, and causes school anxiety.

Please understand that when they see the school come up on their caller ID their hearts sink, remember to tell them about all the gains their children are making as well as their deficits! Take a minute before you call, and know that they appreciate all you do for their child. Try to appreciate all they do as well… then make the call.

The next time you are in the teachers lounge, Starbucks, or Wal-mart… please do not discuss their child! Please do not make negative comments about their parenting, or their child’s behavior… it will get back to them. WORDS DO HURT!

The next time you pass the cafeteria and see their child sitting alone… please consider inviting that child to eat lunch in your classroom or be your helper that period. Consider working with a guidance counselor to set up a lunch buddy group in a different area.

The next time they are at the CSE meeting planning their chid’s IEP… know that they are educated, informed and confident knowing special education law. Know that they have found the courage to stand up to conformity and will explore every option to give their child the differentiated educated that will show their gifts and not just their disabilities. Understand that educating a child with special needs is one of the most difficult tasks a parent can face… for homeschool mom’s, and for children in traditional schools. Know that the last thing they want is an adversarial relationship… so please, show them the same respect they show you!

The next time you are creating an educational plan please take into consideration that their child may have specific interests or obsessions. Foster those interests, think outside the box… their parents do.

The next time you see that child in a wheelchair, unable to speak, or control their movements… don’t stare, don’t look away, say hello. Do not assume that because this child is nonverbal that they are not intelligent, or that they don’t understand the awkwardness that you feel. Take a moment out of your day to show kindness, support a parent enduring incredible pain… just give them a smile.

The next time your child comes home telling you how Johnny or Susie is so weird, take the time to TEACH about differences. Take the time to TALK about compassion, acceptance and special needs. Please remember that your child learns from you! Be a role model, mirror respect, and discourage gossip!

The next time you hear a comment about how “out of style these kids are”… educate about tactile sensitivities, and the fact that these kids cannot tolerate many textures. Imagine what it would feel like to have sandpaper in your stilettos, or tight elastic holding on your tie.

The next time you see an out of control child… do not assume it is bad parenting! Understand that many of these disorders have an organic basis, are biological, and are real illnesses. When you hear the word mental, terminal, rare disease illness, take out the “MENTAL, TERMINAL, & RARE DISEASE” and remember ”ILLNESS”!

Know that it is this generation that can stomp the stigma, and create a world of acceptance.

The next time other parents are talking about “Those Kids”… be our heroes, stand up for us!

The next time you see a special needs child, please know they are not just special in their needs… but in their brilliance as well.
In Christ~ Heath