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Amy emailed with details about Jordan’s first outpatient oncology session.  Please read on…

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Our first day at the oncology clinic went much smoother than I had anticipated.  Mostly it was because I was relieved to have nurses and his oncologist look at him, his labs, and let me know how he was doing.  It is hard to be at home and looking for the signs and symptoms that we need to call about since his red blood and platelet counts are so low.  We know how to keep a sanitary home and minimize bacteria exposure, so dealing with his ANC (ie not having an immune system) being only at 130 is doable…but the rest is scary.

Our day went as smooth as it could have thanks to some heads up from my mom’s friend who is an oncology RN in the clinic, who knew we thought Jordan would need a blood transfusion (his HGB was 8.3 at discharge so we knew he would need blood soon…his HGB only dropped to 8.1 by wed so he was doing better than we thought).  Also, Eva Hooten had her last treatment on monday (YEAH!!!! Praise God!) so we recognized her nurse and it was nice to have a connecting point with some of the nurses in talking about what an amazing little lady Eva is=)  We were there from 11 to 5pm which felt “quick” as blood transfusions can take 4 hours, he received 2 chemo infusions, had his pic line dressing was changed, and we saw the oncologist.  The benefit of having the blood transfusion is we had a bed and a curtain which made Jordan feel a lot more comfortable.  When we went down the hall to the clinic to see the oncologist, Jordan kept crying “I want to go back to my bed”.  He was the same way in the hospital and never wanted to leave the room for fear of what procedure would happen.  I pictured a day of wrestling with a 2 yr old to keep his mask on in a large waiting room…so I am thankful we had a little corner he felt safe in.  In time, we will get to explore the play room, etc and build positive experiences on the floor so he is not so fearful.  It is amazing how a 2 year communicates…when we went to the ER on Sunday and on wed for the clinic he kept asking to drive in the car…basically saying I want to go home!
So we made it home for caterpillar noodles (curly green noodles) and off to bed.  He had been on a brat (banana, rice, apple, toast) diet as he was dealing with diarrhea since monday so he was excited to ask Dr. G (his oncologist) if he could have caterpillar noodles with cheese.  When Dr. Gaynon said yes, he started to cry because we didn’t have them in that room.  Silly thing to share, but his main theme of the day was when can I have my caterpillar noodles=)
On Thanksgiving we were all a bit low as my parents and grandparents couldn’t come as they were afraid they were coming down with something.  I was achy and ended up throwing up that night…so I was feeling discouraged that I seem to be the largest germ risk in Jordan life….anyways….we sat down and asked the kids who wanted to tell Jesus what they were thankful for.  Jordan had us in tears as he started (he has not prayed since starting his fever 2 weeks before his diagnosis) “thank you for the day, thank you for Cedar, Jonah, Jeremiah” and then the other kids jumped in “pray Jordan feel better, thank you for Daddy, mommy, Teta, Deda, Uncle Petie, Uncle Todd, Pa, Grammy”.

We have a lot to be thankful for…especially having Jordan out of the hospital and with a little more color in his face thanks to donated blood!  We are also so thankful for our family keeping our program going at home and loving the kids and us so much!  We are so thankful for you as well and your care and prayers that surround us.

sending love,
amy

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And from Tracey, Amy’s cousin…

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Hey all! Thank you so much for continuing to pray for Jordan – this little guy still needs our constant prayer, so please keep those prayers comin’! Please pray:

*That the chemo will find and attack the cancer producing cells/marrow in Jordan’s body and GET RID OF THEM!!!
*That the healthy cells in Jordan’s body will be protected from the chemo.
*That Jordan would continue to be provided with ways to feel secure while he is at the hospital/clinic.
*That Jordan’s language skills will continue developing normally so that he can communicate his needs to Amy.
*That clinic visits would continue to go smoothly.
*That Jordan will continue to be healthy enough to enjoy the things he likes – like caterpillar noodles!
*That the whole family would be protected from sickness.
*That the kiddos would continue being a support for Jordan, and through that, bring joy to their parents.

Please pray specifically for Amy & Phil and the rest of the family. Amy sounds a bit exhausted (which is understandable), but as she’s said in the past, she tends to get sick when she hasn’t had enough sleep or when she’s very stressed out. Pray that she will be granted rest and will be able to take time for herself and her spirit – that she will not forget to eat, will have time to turn on all that praise music that comforts her, and will be granted peace in her prayer life. Pray also for Phil as he has gone back to work – that he would feel God’s comfort and protection over his family when he is away from home.

Many have asked about platelet and blood donations…as of right now, Jordan doesn’t need platelets and has enough O+ blood banked for 3 months or so. We will ask if and when he needs more. However, if you feel so led, there are alot of other little guys out there just like Jordan who need blood – so give away!

We are all so thankful for how Jordan’s prayer and church community have responded to his family’s needs! I was told that we had enough people to provide meals for the family for 2-3 months just within the first 24 hours after posting the need. Wow! At this point, we are pretty much set on meals – thank you to all of you who are serving the family in this way! For those of you out of the LA area, please keep sending those email/facebook encouragements to Amy & Phil and their family – they are so very appreciated. For those of you who have asked about giving to something more tangible, Amy has identified something that will be needed for Jordan’s recovery in the future which will benefit the whole family. You have all given so much of your time, but if you’re interested in giving to a fund, let me know and I would be happy to fill you in on all the details.

On a personal note, thank you for all the messages you’ve sent to me about Jordan, Amy & Phil, and your desires to support them! Thank you for being patient as I respond to messages and try to come up with answers to your questions. I will pass all of these on to Amy & Phil in time, so that they know you were thinking about them!

Thank you for praying for Jordan!

Zero.  Jordan’s blast percentage is zero today.  Exactly what it needed to be.  PRAISES.

PRAISES!!!!

Today was good, although not exactly according to plan.  Jordan’s doctor decided that he didn’t need a bone marrow extraction.  The extraction apparently wasn’t intended to tell if Jordan was cancer free.  It was going to tell the doctor how Jordan was doing in relation to the chemotherapy, and therefore how aggressive they could be with the chemo moving forward.  Or something like that.  Turns out, based on some genetic testing they did on Jordan several days ago, it was decided that Jordan is of the ideal genetic makeup, and will continue responding well to chemo, so the doctors already knew what they needed to know.  Praises that Jordan has the “right” genetic makeup.

They still put him under today, for a spinal tap and chemo session.  He came through them really, really well, and has been released from the hospital.  PRAISES!!!!  He is home with his family, and is pretty happy about it.  Wouldn’t you be?

So – now begins a tough 28 days.  Over the next 28 days, Jordan will go in for aggressive chemotherapy once a week.  At the end of 28 days, he really will get a bone marrow extraction, and he needs to be cancer free.

In the meantime, as I mentioned last night and this morning, Jordan has some rough days ahead.  The chemo is going to start taking its toll, probably this week, and his immune system will be extremely vulnerable.  I really can’t understate how much danger he’s in if just gets a scrape, or comes in contact with the common cold.  It can literally kill him.

So, the Shahbaz household is in quarantine, with no visitors allowed.  This will present some special challenges, and as I’ve said before, and will say again and again, these guys need your prayer support.

Here’s the list:

• Jordan’s health and immunity.  Just can’t stress enough how important it is that Jordan be supernaturally protected, and not just for the next 28 days – for the next 3 years.  Pray that his body tolerates the chemo, not just with minimal side effects, but with NO side effects.  Pray that he continue eating, pooping, and sleeping to keep his body strong.  Pray that the doctors continue to have wisdom in treating him, and that Phil and Amy continue to have wisdom in caring for him.  Pray that he is cancer free in 28 days, and still cancer free in 7 months, and still cancer free year after year after year after that.  And that he stays healthy throughout his treatment.
• The family’s new normal.  Pray a special grace for Jordan’s siblings, Jeremiah, Jonah, and Cedar, for Phil and Amy, and for all of the family that will be supporting them, especially during the quarantine, however long it lasts.  Pray that these kids will know the joys of childhood – especially Jordan.  That their finances will miraculously be in order despite Jordan’s medical expenses.  That their schedule will supernaturally flow into a rhythm that is manageable.  That the quarantine would not make any of them feel cut off – instead, that it would draw them together into an even tighter unit.  That the logistics of keeping Jordan protected and healthy would fall into place easily and without obstacle.

We will probably go to posting updates only when there’s news or special prayer requests.  It may be days or weeks before we have anything new to report.  That doesn’t mean the need has decreased.  Please remember Jordan, Phil, Amy, and the rest of the family in your prayers daily.  Please do not cease in remembering them.  The journey they face is a marathon – and it has just begun.

And if you’re in the LA area, you can provide a meal for the Shahbaz family.  Simply let me know you want to help, and I will assist you in getting in touch with the right folks.

Thank you for all your prayers and support so far.  I hope you’ve seen how effective those prayers have been.  Phil and Amy, and all of us are so thankful for the outpouring of support.  Keep it coming!!  Amen and amen.