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From Amy:

Can you pass along for everyone to keep praying for Jordan’s body to recoup as his counts are still too low to start this next round of chemo (his “immune system” ANC level is still at 280…needs to be above 750). His MD says this is normal as he just finished a really intensive round…and he is high risk ALL so they blast him harder. He is doing well other than that. =) Thanks for your prayers.

On another note…please pray for Cedar to get off her GI meds…she is almost 3 and it has been way too long. But every time we reduce them she really has a lot of trouble processing her food (ie she does not eat because her stomach hurts and is up at night crying as her stomach hurts). Pray her motility would learn what to do on it’s own (ie her intestines would know how to push food through so that her stomach does not hurt…get constipated, have acid reflux, etc). One of the preemie issues still remaining…but her labs are showing that the reglan is increasing her progesterone level so we are taking her off the med quickly. Pray she would not loose weight after coming off the meds and keep a positive relationship with food. In the past, she regresses when her stomach hurts and just wants to drink milk.

Thank you all for all your prayers!

I got this on Christmas eve – so sorry for the delayed posting.  The following is from Tracey:

I talked to Amy yesterday on her way home from Jordan’s weekly hospital appointment. She hasn’t been able to get to her email and send out an update on what she’s been thinking to friends and family because it’s just been too crazy.

Jordan had another spinal tap, chemo, lots of fluids, and then more chemo (if I heard correctly). She said that the appointment was a little crazy – lots of waiting without a private room, which meant that she struggled to keep the mask on Jordan all day. But, she keeps saying that Jordan is just a trooper! She said that she’d finally been able to get him to eat something when they got in the car, and then he just crashed! He was asleep the whole time we talked. Amy sees that he finally lets his defenses down once he’s in the car – he’s still not a huge fan of the hospital.

This last week was the first week of Amy having to give Jordan chemo at home (4 days through his PICC line (IV) and 3 in pill form) – and Amy said that it was the first week she was really starting to feel the emotion of the whole situation. We had a bit of a chuckle about the ‘Chessum mode’ we go into during a crisis – how it is a remarkable gift to have because it allowed Amy to focus on her role and job in Jordan’s treatment and recovery – allowed her time to pull together at the outset and focus on hope and what Jordan needed. But, it seems that now is the time Amy is working through some of the grief – trying to give it completely to God, learning to rest in Him, and accepting His peace in the midst of overwhelming circumstances (She quoted John 14:27: Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.).

One of the things I keep hearing her say is that she is really struggling with the fact that it’s “ok” to put poison in Jordan’s body, but she has to wear thick gloves and keep everyone else away from it, etc. She says that all the meds are marked to the extreme – “CAUTION” all over them. She gets tearful about his little bald head at times because it is a constant reminder of the poison in his body. She said that she’s really wrestling with this and doesn’t really know how she feels about it. I know that the Moms reading this will be able to identify and pray for her effectively!

This last week had a bit of a medical learning curve attached to it. She said that Jordan only threw up twice last week (Hurray!), and that it was mostly due to anxiety over meds rather than the chemo. He’s very leery of the meds and cries when he has to take them – he gets so upset, he throws up, and then he has to take them all over again. Jordan’s a good kid – and he takes them, but how do you explain this to a little guy? He only knows that they make his tummy and body hurt. I can only imagine what that does to you as a mom. On top of the oral meds, Amy is still working with the IV chemo Jordan gets through his PICC line. She said that there were bubbles in the line at one point, and it took quite awhile to get them out without getting the chemo all over the house (all this with a 2 year old on the end of the IV). Jordan also isn’t getting enough fluids at home – he will only drink 3 or 4 oz. a day. Amy’s just trying to get fluids in him, but all of the only stand-bys aren’t working right now because all of his taste buds have changed – and because he thinks she may have hidden meds in them. She’s resorting to buying juices in different packaging (like soccer ball shaped Gatorade bottles), popsicles, etc. just to get him to drink something. The problem is that with 3 other 2 year olds in the house – they want these new fun drinks too! Amy said that they all had red and blue Gatorade all over the floor the other day – the kids were having fun but no fluids were getting into Jordan, and a lot of sugar was getting into the other 3 (another thing that Moms can identify with)!

Last Friday they had their head shaving party – the hair falling out constantly was bugging Jordan and it just had to come off that night. Amy is such a great mom! She was trying to explain what was going to happen to the kids – showing them pictures of when they were babies with no hair and how cute they looked. Telling them that daddy was shaving his head too and they would do it together! Trying to be smiley about it…but, she said that it was hard to be smiley and make sure the kids understood because they were having what Amy termed “a fear ridden night” that they were going to have to take him back to the hospital because he was starting to run a slight fever (which meant he would be in the hospital for at least 7 days), and his PICC line wouldn’t flush for an hour. After, the boys were running around touching their heads – still a bit confused about what happened to their hair. She says that Cedar keeps asking “what happened to his (Jordan’s) hair?” Amy said that she didn’t feel like she could prepare them for this, and that weighed on her. They did end up taking Jordan to the hospital the next night because of fever – but, miraculously, he didn’t technically have a fever when they arrived at the hospital, so they filled him full of fluids and sent him home.

Please Pray:
• For Amy as a mom – that she would be able to meet all the kids needs. For Phil as the provider – that God would grant him peace. For the kiddos – that they would continue to be flexible and understand what is happening around them.
• That Jordan will make it at home over these next weeks (and especially through this weekend). He does so much better at home simply due to the anxiety – but these chemo meds are really supposed to kick in this week.
• That Jordan’s hemoglobin numbers stay put (he was at 8.6, and they transfuse at 8).
• That the church finds enough donors to meet Jordan’s need for blood and platelets. To find out if you can help – please see my last note!
• That Jordan and the family will ride through this cold they’ve gotten. She said that Jordan’s nose is still running a bit, that Phil has a cold, and Cedar is congested. Amy said that she knows that she’s done everything she could possibly do to keep him at home, and that if he goes back into the hospital she won’t be as disappointed as she would have been – but, we’d all still rather he be at home.
• That Amy would know Jordan’s meds, how they affect him, how much he needs, when he needs them, etc.

Since it’s Christmas – may we remember that God sent us peace and mercy through the birth of Christ. Please pray that God would give the whole family an extra portion of that peace and mercy. The “oldest” of the Shahbaz quads was named Jeremiah Emmanuel (God with us) as a reminder that God truly was with this family and these kiddos – pray that they would continue to feel God’s presence and that they will always continue to see “God with us” in their lives.

From Amy Shahbaz:

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Hello All!
I don’t want to say it too early but I think we might be having our new “normal” of a week.  Yeah!  The biggest factor has been managing Jordan’s poop issues.  We have been on either end of the extremes…constipation or diarrhea and it causes him to loose way too much weight, have tummy pains all the time, and wake up a lot at night and not want to go back down (and wake up his siblings all at the same time at 2 am…not fun!).  So pray specifically that we could just have “normal” poop and that I would be making wise choices as far as his diet, stool softeners, etc. and that his tummy could heal/settle.  Praise God that it doesn’t look like he got whatever tummy issue I was dealing with on Thanksgiving!  Pray that I can kick whatever allergies I think I am dealing with…it normally wouldn’t be an issue but I don’t want to risk the fact that it could be a cold around Jordan so that mask stays on for now.

The chemo’s largest impact on Jordan so far is his weakness…he was playing trains finally today and started crying cause he couldn’t stand up with the trains in his hands and go to the part of the track he wanted to be at.  It breaks my heart.  He can’t verbalize it all…but just says, mommy hold me…which means…help me get up!  I am thankful my career has been helping elderly mostly so I pick up on things quickly.  He is like a little grumpy (due to the steroids) old man that is walking by holding onto the furniture and should have a walker=)  Thankfully his siblings are really sensitive to his needs and bring him books, his favorite blue car, let him pick most of the “shows” (which is amazing as Jeremiah usually will not back down and wants his choice) and are “careful” around him.  The common statement are “mommy Jordan go to the doctor, pray Jordan feel better, Jordan has ouchie, it’s blue…no touch Jordan ouchie-only mommy touch.”

Sounds like the next round of chemo will be harder as his immune system (anc) will be at zero (starting the week of Christmas I think).  The MD said half of the kids with high risk ALL end up back in the hospital during this 2 month treatment plan with a fever as they literally have no resistance. The RN’s say that if Jordan does not fit into the “typical” treatment of “high risk ALL” Dr. Gaynon is the oncologist to have as he is the one who trains oncologists across the country on the treatment plans.  Just like with having quads, our perinatologist was not the one to answer all my silly questions, but he was the one we needed when “problems” arouse.  We are thankful to have Dr. Gaynon in charge of getting rid of Jordan’s cancer.  Our friends reminded us that our role is help Jordan be kid and have empathy for all he is dealing with.  My personality wants to know the plan and all the details…so pray that I focus on “my role” and take this journey a day at a time…as you cannot predict all the details I want planned out/prepared for at this point=)

12/9 will be the end of this first 28 day cycle of getting Jordan into remission.
So next wed will be the big day to pray…that he has no blast cells in his bone marrow (they will do a spinal tap, bone marrow biopsy, and get chemo in his spine while he is under anesthesia).  After that he will get his 2 chemo’s and then hopefully the oncologist will have the results for us. So it will be a long day=)

We are deeply touched and encouraged by the outpouring of support for our family and love for Jordan=)  Thank you!

Love,
The Shahbaz 6

I wanted to share this as it’s a bit of insight into what Phil and Amy are going through, and how they are coping, with the reality of having a child with leukemia.

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To our amazing friends and family=)

You have all blessed us in so many ways with your unselfish outpouring of care and prayers for Jordan and our family.  We are humbled, thankful, and reminded once again of how God holds us up and supports us with the community around us.  This may be a long email as it takes me a long time to get to my point…but you all love me already for this=)  Just want to share this journey so far with you….

Phil and I had been worried about Jordan for 2 weeks before his diagnosis and I had noticed his color change, fatigue, and bruising.  I talked to the MD 3 times in the weeks we were worried about him about his color change (anemic) and no labs were drawn until Nov 9th and they did not review the labs until we came for our 3:20 appt and were then sent straight to Hunnington ER.  That month was crazy as my parents were gone and I was up with Jordan most of the 2 weeks as he was not breathing well (grunting at night).  During the day he needed more attention but I had to spend most of my time jumping up for Jeremiah and Cedar’s frequent potty runs.  I mention this because with our journey with bringing quads into the world, it was hard for me to let go of things that “I could have done” to advocate better for our kids, etc. This journey with Jordan for the past 2 weeks has been about applying what God taught us in becoming parents of quads.  I will tie this in later=)

At Hunninton Er I knew something was really wrong with how the nurses and doctors treated us…they were way too nice and it reminded me of how we were treated when we got the news of having quads.  All I knew is I just did not want it to be cancer.  But as we waited for the blood tests, I just kept saying in my head “God is good all the time, God is good.”  The news came and it almost was not a shock because we could tell there was something really wrong.  It felt like it was a repeat of leaving my perinatologist appointment and heading straight to hospital bedrest…Jordan and I were transported by ambulance to children’s hospital and all the poking and proding continued, blood transfusions started, and no chance to put an exhausted little man to sleep.  It is a crazy that you can drive your child to the MD office for a check-up after hearing he had bronchitis and end up in an ambulance to CHLA.

I am thankful for people I have learned from along the way like Sara, who gave us rest at night when the kids were babies, and shared with me her continual journey of diabetes and battling with the loss of  some of her vision in her 20’s….she came to the peace that God is good all the time.  I am thankful for the Hooten’s who shared their journey of making their daughter Eva’s life as normal as possible after she was diagnosed with luekemia (ALL…same as Jordan).  I kept thinking of Katie’s words when they said leukemia in the Er…”the number one predictor of how well a child handles their illness is how their mom responds to it.”  I am thankful for all God does to prepare us for our devastating moments in life.

I am thankful that I am not gripped with all the fear I dealt with in carrying quads after being bombarded with all the stats against our pregnancy from most of the medical community.   Our kids lives are a testimony to answered prayers and God purpose for their lives.  I am thankful that my mind has not gone as a normal hospice social worker mind goes when you hear cancer…death.  I know Jordan will make it through this battle, I am just crushed that he has to suffer more after already having to suffer in the NICU for 2 months.  That is the hard part, his hands already have scars from all the IV’s from the NICU…it breaks my heart that his body will have so many more scars.  But then when I look at it all in perspective, I still am amazed that we have such “healthy, smart, happy” kids who all started out life under 3lbs.

I never understood why we ended up with quads…we never did IVF, PCOS is not that uncommon as a reason for infertility.  I think I know now why…one of the biggest comforts during this process is knowing that Jordan will have his siblings to play with, help distract him from his symptoms, help him keep up with his milestones, and help his life stay normal and routine.  We had already started to live in “hibernation” before his diagnosis as we did not want to deal with the swine flu times four and knew our kids were in the category of high risk due to their chronic lung disease for the H1N1 virus.  Also, Phil is working 3 jobs and with my parents gone for a month, we knew we needed to keep the kids well.  2 days after my parents got back, Jordan was diagnosed with Leukemia…God knew we could not have handled all the changes that came with the diagnosis without them being in town=)  All that time in trying to avoid the kids getting sick…it is crazy that Jordan ends up cancer.  I don’t know how to interpret that yet.

Recently we gave our life stories in our home group and it was my first chance to review the last 2 years.  God brought a lot of closure during this experience as I shared the experience of infertility and having HOPE for having kids.   HOPE for our four kiddos to be born being able to breathe moved to GOD WITH US as we experienced the miracle of having 31 week quads being born and breathing.  Also, amazement that my body made it through 3 months of bedrest.  Recently I finally moved onto GRACE and cluing in that I needed God’s grace in order to let go of a lot of hard parts of raising quads and dealing with the medical system, etc.  All this to say…I am thankful for the past lessons of needing to apply God’s grace: the alternative is a life of isolation and bitterness.  I needed these lessons to apply God’s grace to myself and the MD for not doing something sooner when Jordan showed signs of enema, etc.

I am also thankful that Phil and I survived raising four preemies and pray that I have learned from my past mistake of being a critic, instead of a support to Phil.  He is doing the scheduling now because he knows I suck at telling people what I need (outside of my parents and him=).  He also knows that my core is wanting to do it all myself…I think I am a 2 year old at heart=)  I am touched by Phil’s brokenness for the pain Jordan is experiencing.  We have switched roles a bit…but I have probably gone into the role of crisis intervention and know what role I need to play to keep the kids calm, etc.

One of the blessings of being a mom is what voice, touch, presence can bring to comfort your child.  I am thankful that Jordan finds comfort on me and I think it makes it easier for me as I can hold him and offer comfort.  My tears come when I can’t help him feel comfortable or distracted…usually that is in the middle of the night.  For those of you following from the beginning, there have been a lot of mentions of poop.  That is because he has been soooo uncomfortable and that is when I get frustrated.  I am thankful for a nurse Laura who came in and saw one of the episodes of Jordan screaming in pain and finally validated my concern and his extreme discomfort that he had been experiencing for more 2.5 weeks.  All the MD’s kept telling me to stop focusing on the poop…but that is what he was screaming about at night.  I am thankful that is behind us…although now we are on the other end with diarrhea=)

This email is turning out to more of journal for me…so thanks for listening=)  I am thankful for the sweet and innocent prayers of Jonah, Jeremiah, and Cedar for Jordan to “feel better and come home.”  Their belief and sweet voices make me cry.  Cedar is such a care giver and gave Jordan a huge right when he came home.  Jeremiah encourages Jordan to gain his strength back and brings his ball to throw to Jordan.  Jordan holds onto the furniture as he walks and hobbles like an old man, but does not complain and plays with Jeremiah.  Jonah dances and jumps when Jordan came home…  He goes to bed with his roomie Jordan and says “shhhhh Jordan sleeping.”

Jordan is my kiddo that I have said does not need a mommy as he is so independent and unemotional.  He walks around with confidence and is all boy.  I am thankful he soaks everything in and is so smart and exploring.  He is my boy who would not cry at blood draws if I explained what was going to happen and was curious to see his blood.  I think his personality will make this journey much easier on him (and selfishly us too).  He is a fighter like his Daddy and does not give up.  He is definitely the leader of our tribe, not because he wants to but because of his confidence and exploration.  He also tells you directly what he wants.  Like this morning after being up since 4:30am, he tells me at 7am “I am hungry.  I want caterpillar noddles.  I don’t want juice.”  He still has shy grin and dimples…just more irritable and angry.  What precious kiddos we have=)

So thank you for all your texts, emails, calls, and offers for help.  We are in the midst of figuring out what the next 3.5 years of treatment will look like.  But are thankful to not feel alone on this road.  I don’t know if I should say this, but helping Jordan fight ALL seems much easier than figuring out how to keep 4 preemies alive. We did not have time to connect with multiple parents in the beginning of learning to parents of multiples/preemies.  We are thankful for the Hooten’s and how they model continuing to live life and allowing your kids to enjoy their childhood while fighting ALL (acute lymphoblastic leukemia). It is such a comfort to have Eva’s sweet face in our minds when we think of ALL…knowing the amazing girl she is and all she has made it through successfully.  Pray for Eva and her family as you pray for Jordan=)  Two very brave kiddos who have bright futures ahead of them!

much love,
amy

I’m really happy to report that today was a good day.  Follow up blood tests today showed that Jordan has been responding well to his first 3 days of chemotherapy.  Here are the stats:

When Jordan arrived at the hospital on Tuesday night, his white blood cell count was 54 – over 50 is really serious.  Today, his white blood cell count was 6.

On Tuesday night, Jordan had a blast percentage of 67.  Blast cells are the cancerous cells in the blood, and the percentage indicates how many of those there are versus healthy blood cells. (Right, Bekah?)  Today’s blast percentage – 16.

These are fantastic numbers and very encouraging considering both need to be at zero in 4 more days when the next bone marrow extraction happens.  That test needs to show total remission.  And, then the cancer needs to stay in remission for at least 2 more years before he can stop chemotherapy.  (For more on Jordan’s treatment plan, see my previous post.)

Tim happily got to hang out in Jordan’s hospital room for most of the afternoon today.  Tim’s been at the hospital for the past few days, but was never allowed to go into Jordan’s room until today.  They played and laughed, and Tim reports that Jordan really seemed like himself.  He even ate most of a hot dog, which is so good.  He hasn’t been eating much the past few days, and he needs to in order to keep his body strong for chemo.  He’s doing well today.

Thank you to everyone who has been reading and praying and thinking of Jordan and the Shahbaz family.  Literally, from all over the world, we are rallying together in support of this family.  It is a beautiful thing.  Please know that Phil and Amy know you’re out there and appreciate you.  Even better, your prayers have been answered in a couple of ways:

1.  Jordan’s numbers are getting better.
2.  Jordan’s continuing to poop!  Yay!  If he continues doing as well as he is now, he is scheduled to go home from the hospital on Monday.  That will be a tremendous blessing for him and the whole family.

So…don’t stop!  Please keep praying for the following:

Pray that Jordan continues to stay regular so he can go home on Monday.
Pray that Jordan will get better at having his blood pressure taken.  It’s really been freaking him out, and the pressure cuff probably hurts his sore bones a bit, so his blood pressure readings have been inaccurate and high.  Pray that he’ll relax into those readings so the nurses can tell how his body is doing.
Pray that over the next few days, as Phil and Amy are driving back and forth to the hospital, they experience very little traffic, and easy and safe drives.
Please continue praying fervently that Jordan will not experience the horrible side effects of chemotherapy.  It’s still too early in the chemo for him to be suffering, but it’s likely to start happening soon.  He’s two and a half, and chemo poison can do horrible things to a developing body.  Pray, pray, pray that it doesn’t.
Pray for Jeremiah, Jonah, and Cedar (Jordan’s siblings), and the families of Phil and Amy, that they will feel strengthened and full of hope and peace.
Pray for Phil and Amy, that they may continue asking the right questions in care of their son, and they too may feel supernatural hope and peace.
And please, pray that this cancer goes away, and stays away, for good.

Some of those prayer requests seem very mundane.  But trust me – they will make a difference.  Just keep praying.

Tim snapped some sweet pics on his iPhone at the hospital today.  Thought I’d share.

Phil and Jordan

Watching a movie

Tim says they actually broke stuff while they were playing. Hopefully nothing important.

Climbing on the table - Tim is a bad influence.