The bone marrow test results came back, and the diagnosis is Acute Lymphocytic Leukemia. This is actually good news, as this is the more common of the two acute leukemias, is treatable, and has high percentage survival rates. For more info on ALL from the Leukemia & Lymphoma Society, click here. The doctors have now put together a road map for Jordan’s treatment. It is as follows:
For the next 7 days, Jordan will receive aggressive chemotherapy and steroids. At the end of 7 days, they will do another bone marrow extraction – and the results of that test should show that he is cancer free. If so…
He will receive aggressive chemotherapy for the next month, and they will wean him off of the steroids. At the end of that month, another bone marrow extraction, and he should be cancer free. If he’s still cancer free…
He will continue to receive aggressive chemotherapy for 7 months, and no steroids. At the end of the 7 months, another bone marrow extraction, and another cancer free test. If he’s still cancer free…
He will be able to continue his chemotherapy orally (no more IV) for the next 2 to 3 years.
Jordan is now 2 and a half. If all goes well, by the time he is 6 years old, he will no longer need chemo.
If any of the bone marrow tests I just mentioned still show cancer, then we can only assume the treatment gets worse, and for longer.
And now the good news…
Jordan is doing well today, and experiencing little to no soreness from the bone marrow extraction yesterday. Thank you for your prayers! They worked!
Additionally, the doctors think they can send Jordan home from the hospital (to do his chemo as an outpatient) in 4 to 5 days IF he’s regular. He’s been very constipated the last few days, and extremely uncomfortable because of it. Tonight, he finally pooped. Hooray for poop! If he keeps pooping, he can be released from the hospital. This would be so good for so many reasons. It would be so much more restful, comfortable, and familiar for him at home. A small sense of normalcy can do wonders for a child enduring such suffering.
Pray that Amy and Phil find peace, and are strengthened. This will be a constant need.
Pray that Jordan continues to poop – so he can go home!
Pray that in 7 days, Jordan is cancer free. And begin praying that a month after that, and 7 months after that, and for the next 3 years, Jordan continues to respond well to the treatment and be cancer free.
Pray that Jordan’s little body is strengthened and protected from the chemo. Pray that he experiences none of terrible side effects that are so often associated with poisoning a young and growing body. Pray that his immunity remain uncompromised and that he stay healthy throughout.
There are lots of people who want to volunteer, give money, and help out in whatever way… We’re still processing some details, and will keep you all in the loop as needs arise. Phil and Amy will definitely need our help – but timing is key. So, stay tuned, and just keep praying, hoping, and doing whatever you do to rally emotionally and spiritually around this little boy and this precious family. The hard times are just beginning, but there is hope. There is infinite hope.
My brother Tim called tonight to give us an update on Jordan Shahbaz. Tim was with Phil and Amy at various points throughout the day. He lives just a few blocks from LA Children’s Hospital where Jordan is being treated, so he can come and go…
Today, Jordan was put under for a spinal tap and bone marrow extraction. It was a long and arduous set of procedures. These tests will help the doctors fill in the puzzle pieces about Jordan’s body and genetics so they know exactly what kind of leukemia he has and how to treat it. Additionally, while he was under, they proceeded with his first chemotherapy treatment. No matter what the details of his cancer are, they know he will need chemo, so they went ahead and started it.
It is very likely that Jordan will have to have chemotherapy every other day or every 3rd day for the next 1-2 years. Along with countless blood tests and transfusions, pokes, pricks, and hospital stays. What a tough life for a child.
Jordan is a strong kid, with wonderful demeanor. He has such a good spirit, and is already showing that he can handle more than he should have to. Tim reports that Jordan endured the day excellently – when Tim phoned me, Jordan was hanging out and watching cartoons. I’m sure he will be sore tomorrow, and the side effects of the chemo will begin kicking in soon. Among the common side effects – hair loss, weight loss, nausea, etc. – chemo in children can cause much worse things, like paralysis. They expect Jordan to be in the hospital this time around for at least 2 weeks.
Fortunately, LA Children’s is a respected hospital, and gets great marks. Jordan will have excellent care. Also, the overall survival rates for leukemia have gotten much better in recent years. The odds are in his favor. That doesn’t change the fact that this is unbearably frightening, or what Jordan is going to have to endure, or what Phil and Amy are going to have to watch him endure.
Will probably have more info tomorrow as the doctors analyze the test results. In the meantime, please…
Pray for Phil and Amy to feel buoyed with strength and infinite hope for this marathon journey.
Pray for Jordan that he may supernaturally suffer little or no pain from today’s test and none but the most benign side effects of the chemo.
Pray that Jordan is able to sleep and eat well so as to strengthen his little body for treatment.
Pray for the doctors to have wisdom and insight to quickly diagnose and treat Jordan’s condition.
I am so blessed and overwhelmed by the outpouring of love, support, and prayers for the Shahbaz family. Please know that they are aware…and will let us all know how, when, and where we can help. As specific prayer requests come in, I’ll post them here.
Also, many adoption agencies have grants specifically for the adoption of waiting or special needs children.
Adoption is a major decision, and not to be taken lightly. And I’m certain that not everyone is called to it. But if you’re wondering…if you think maybe, just maybe you could…I encourage you to consider it. Just read, research, and ponder.
PS – Did you know that November is National Adoption Month?
There are many more great organizations in each of the above categories…I wish I could list them all. If you really want to give, but are too overwhelmed, let me know, and I can help narrow it down for you.
Thanks again for reading. I am really blessed by all of you.
Little Jordan is getting bone marrow extracted and a spinal tap today so the doctors can get a better picture of what kind of leukemia it is, and how advanced it is. Either way, he’s probably going to need to begin chemotherapy immediately. The tests today will be very painful, and chemo is no fun either, as many of you know. Please continue praying. We will update you as we know more.
Our good friends Phil and Amy, who had quads a little over 2 years ago, rushed one of their sons, Jordan, to the hospital last night. He has been diagnosed with acute leukemia. We don’t know more than that right now. But we beg you to pray, and pray some more, send good vibes, hope and hope some more – do whatever you do – for Jordan’s health.
Last night also saw the death of our friend’s newborn great-granddaughter. She apparently passed in her sleep, possibly of SIDS. Also don’t have all the information – but please pray, hope, send good vibes, and pray some more for Mark, Roseanne, Ashley, and family.
Hi again – Rachel here. Some of you know that I am still struggling with my Graves Disease. I’ve been taking medication for it, but it hasn’t been doing the trick. So, I’m having a chat with the doctor tomorrow to discuss my options – increasing the dosage, changing the meds, etc. In the meantime, as I’ve described in an earlier posthere, I am suffering some side effects. One of them, the worst one, actually, is emotional. It’s been a crazy up and down while my hormones take a hay ride…one minute I’m so angry I want to beat my hand against the wall, the next minute I’m crying my eyes out. Those of you who know me well know that that’s just not me.
What does that have to do with orphans, you wonder?
Well…I made the mistake, on one of my sleepless nights, when I was teary already and having a panic attack, to watch “The Dying Rooms.” If you haven’t seen it, choose carefully. It’s a documentary made in 1995 about orphanages in China. In it, they show horrific, devastating images of children being starved to death, tied to chairs and cribs all day and night with rope burns infecting their arms and legs, and painfully suffering and passing away from treatable diseases. These children aren’t crying. They’re achingly quiet. They rock and stare. The ones who are starving whimper sometimes, and their sunken skin reveals the texture of their bones underneath.
No, it wasn’t wise of me to watch the documentary. And I really haven’t slept all that well since. I just can’t get those images out of my head. I have children now, and things have been awakened in my heart that weren’t there before. You parents know what I mean. Add my disease…and I’m a wreck. I randomly burst into tears whenever my thoughts stray to the idea of a child suffering, in China, or in the children’s hospital in San Diego, or in an angry alcoholic’s home, or anywhere.
Disease or not, it is a blight on humanity that we neglect and abandon our children, that we starve them to death, that we rape them and kill them. They are the most vulnerable and innocent. And they deserve better.
So, David and I have decided to do something about it. We’ve decided not to complain about the problem, but to model the behavior we’d like to see in others. We can only do a little. But, “Nobody makes a greater mistake than he who does nothing because he could only do a little.” And, “All that’s necessary for the forces of evil to win in the world is for enough good men to do nothing.” (Both quotes are from Edmund Burke.)
Doing nothing isn’t an option. Not for me…and I hope, not for you.
1. We’ve decided to ship supplies to orphanages in need.
David and I are done procreating. So, the clothes, toys, bath towels, diapers and wipes, diaper cream, bath soap, socks, shoes, and blankets that we no longer need are going to children who need them. Many of the things we are donating were given to us – and so a big thank you goes out to Jon Hinkin and Natalie Schiller, Tova and Jonathan, Amy and Phil, Jeff and Michelle, Ed and Jamie, Rick and Susan, Gwen, Neil and Tiffany, and April, and others I’m sure I’m forgetting. The bouncy chair, bottles and bottle nipples, onesies, hats, pants and jackets – they will warm and serve children who don’t have parents or aunts or uncles to love them, feed them, buy for them… Thank you for your generosity, and for allowing us to pay it forward. We’re sending this particular set of goodies to an organization that will deliver them to orphanages in Odessa, Ukraine. I hope they feel our love and prayers.
If you have items you’d like to send, let me know, and I can connect you with organizations that ship…
2. We’ve decided to donate. We choseLove Without Boundaries. They serve the orphaned and abandoned in China, and they do it well. They provide nutrition, education, foster homes, and caring medical procedures to help special needs kids. China doesn’t usually allow kids to be put up for adoption until they have had corrective medical procedures. But most state-run orphanages cannot afford such procedures. So LWB comes in and helps the kids get fixed up, so they can be adopted. David and I are sponsoring their nutrition program right now which provides high-quality formula and food to state-run orphanages to help prevent malnourishment.
I encourage you to check LWB out, and consider giving to them…but there are other great organizations as well. I’ve done a lot of research, so if you want a recommendation, please just let me know.
3. We’re also volunteering. I’ve just joined the communications team at Love Without Boundaries, and will be serving a few hours a week helping with their website, blog, social media, and the like. We don’t have nearly as much cash to donate as we’d like, so at least I can give them some of my time.
I have a full-time job, infant twins, and an anxiety-inducing disease. If I can do it, so can you.
4. Finally, we’re considering adoption. Most of you know that I am from an adoptive family. I have 3 dear siblings who are Korean, although I think we look a lot alike. 🙂 I’ve always thought that once married, I would adopt – but David and I had second thoughts when we found out I was pregnant with twins, cuz, that’s a whole lot of baby all at once. Now that the twins are born, and healthy, and nearly manageable (for now – just wait until they start walking…), it’s back on my mind. The best, and maybe only, way to alleviate the problem of orphaned and abandoned children is to find them forever families. There are 150 million orphans in the world. Maybe one of them could be yours. Maybe one of them could be mine.
One of the keys to adoption is to be willing to consider a special needs child. Most families think they can only care for a healthy kid, and there are many families waiting for healthy children. But the special needs kids are available now – they are waiting. And some of their needs aren’t so special. Adoptspecialneeds.org has lots of great information, and a great video. (For those of you who’ve already seen this stuff from my Facebook posts…sorry for the repeat!)
I hope you’ll all forgive me for this, but even after my medicine is properly dosed and kicking in, I believe I will still care very deeply for this cause. So, I’m begging all of you to do something about it with us. Imagine, just for a moment that it’s YOUR child languishing in an orphanage with no love or attention, lacking food and clean water, suffering from a curable illness. Your child doesn’t deserve that – no child does.
This post has gotten too long, so I will provide links to resources for you to peruse in a follow-up post. Please take a look, think, pray, discuss, and then decide to do something. Help in any way you can.
Much love to all of you. Thanks for reading. And if you decide to jump in and do something, do tell me about it. I look forward to celebrating our activism. 🙂
This past weekend we went with our friends Ed and Jamie and their daughter Celia to their mountain house in Green Valley Lake (map). Celia’s friend Nicholas joined us as did Rachel’s brother Tim from LA. For the most part, we ate too much and sat around a lot—so you could say it was a perfect weekend. For photos, click here.