And What Followed...

Wednesday, June 28, 2006

Don't Give Up - Little Jacob

Hi everyone. I posted this on the website the other day and have cut/paste it here. (see below)

Real quick about visiting: NOW is the good time. You can come into the room provided you wash hands and wear mask and gloves. Next Wednesday, the day of the transplant, I will be in a bad state. It is the two to four weeks following the transplant that will be the most critical. I may be in and out of conciousness but a familiar face is always welcome. If things go well, 4-6 weeks after the transplant, I can start having visitors inside the room again. Things change day by day. The best thing is to read the posts or call ahead.



It is Tuesday Night, June 27, 2006. Last week I got the final word. We could not wait any longer for a miracle match. Time had run out. The window was closing fast. I needed to have my transplant NOW, but even with all our efforts and hard work, we never did find a miracle match. The closest potential the doctors could find was a partial donor with mismatches. And he was not even in the National Registry. He literally lives on the other side of the world. Donating marrow is a very simple procedure with only slight soreness for the donor. However, for the patient, a bone marrow transplant is a devastating procedure, very risky and full of complications. Using an unrelated donor with mismatches is a tremendous gamble beyond the already known risks. Unfortunately if that is the only option you are given to live, you have to take it.

I am now in the hospital being conditioned for this high-risk transplant, my only hope for survival. Yesterday they drained 60% of my B+ blood and replaced it with O+ blood. The donor's blood type is O+. In Bone Marrow Transplantation, blood type does not matter because the patient releases her own blood type and adopts the donor's blood type in its place. I am now B- but by next week I will be O+. Replacing the blood ahead of time makes the transition a little easier and the transplant more likely to succeed.

I started chemotherapy last night and will continue throughout the week. My blood counts will probably be down to zero by this Monday. Saturday I will get a major dose of Melphalan, a heavy-duty chemotherapy to sledgehammer the cancer with one last big chemo wallop. That will be followed by a few days of anti-rejection transplant drugs. If things are well, I undergo the bone marrow transplant on Wednesday, July 5. The next three weeks will be the most critical; as we pray and hope that the marrow grafts and healthy new blood cells replace the unhealthy ones. I pray that my body does not reject the donor's stem cells (marrow) and that his stem cells (marrow) do not reject my body. If things stay under control, I will remain in the hospital for 100+ days. More than half of those days will be spent in isolation.

I titled this day's journal "Don't Give Up", not for me, but for everyone. For everyone who has coordinated a marrow drive, put up posters, knocked on doors and drove across town to volunteer. For every person who has sent out an e-mail, handed out flyers, stuffed envelopes and gave up so much of their own time to make a difference. To each person who has donated to the foundation, signed up on "Christine's Army", signed up on the marrow registry and persuaded their family and friends to join as well.

I say
"Don't give up" because even if it may be too late for me to find my miracle match, it is not too late for others. There are still not enough Filipinos and minorities on the registry. Our job is not yet done. Visit and to see the countless stories of other Asians desperately searching for their miracle match. Signing people up on the marrow registry should become regular community practice like bake sales and blood drives. It does not matter what your minority or ethnic background is. Make it a part of you. Deep within, each one of us has the power to save a life. But your potential will never be tapped unless you sign up!

Martin Luther King once had a dream that children of every nation would walk together someday in peace. I have a dream that cancer patients of every ethnicity will one day have an equal chance to walk together in health. But this revolution doesn't happen with walks on Washington or sit-down protests. This dream starts with a phone call or a mouse click. And it can only happen with you. It is you yourself who decides whether to make a difference or to walk away. Sign up on the registry. A Patient's face on a website may look calm and distant, but in reality she is desperately fearful of never finding a match. She is dying, and searching for the one person who holds her key to life. And the only person who can give that life, who is the key, will forever be lost until he/she signs up in the marrow registry.

I wrote this in my journal last May:

Today we signed 108 people onto the Registry at St. Denis Catholic Church in Diamond Bar. I met Peter and his son, Jacob, who just turned two and is battling a rare blood disease called XLP. He is in need of a donor. Little Jacob was the sweetest angel of a boy. His smile evidenced the innocence of any knowledge of his own health condition.

father, dressed all in black with a teardrop tattooed near his eye, stood like a tough East L.A. gangster, but when we talked his spirit was fatherly and soft. His voice was calm with the serenity of acceptance. The profound love he had for his son made the air around him thick with emotion. Most children with XLP do not survive beyond sixteen months. Little Jacob has beaten the odds and outlived expectations. His father, Peter, watched his son climb chairs, eat Hershey Kisses and run laughing and squealing across the church courtyard.

"I believe that God trusted me with his little angel" Peter said "to
take care of him while he is here to accomplish his heavenly mission on earth. I believe that Jacob is here to save other people's lives by signing up more Hispanics on to the marrow Registry."

This father's devotion and love for this tiny little soul was thunderous and echoed the
threatening storm clouds above. Jacob chased a foam baseball with his friend, Mateo. He was happy and completely unaware of the watchful eyes of this great man whom God chose to be his father, the one man strong enough to carry this blessed, yet heavy weight.

You may be the miracle little Jacob is searching for.

Don't give up. This is just the beginning. The fight is not over yet.

Much Much Love,

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