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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!

We got the following email from Amy yesterday – good stuff – but keep praying!!

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Good news…Jordan just finished the second phase, Consolidation, of his intensive 7.5 months of weekly chemo treatment!  We need prayer for his counts to jump back up as they are still too low to start the third phase, Interim Maintenance.  Interim Maintenance is a 56 treatment day cycle, followed by Delayed Intensification, another 56 day cycle.  During the final phase of treatment, Maintenance, Jordan will go to the hospital less frequently, hopefully not have to have his PICC line, and will take a pill form of chemo more frequently.  So…we are counting the days until this intensive treatment is behind us!

We went to our weekly Monday clinic day (left the house at 6am for a scheduled spinal tap and chemo) and found out that his counts had not recovered and we are “on hold” until his ANC (Absolute Neutrophil Count:  a measure of the body’s ability to withstand infection) rises above 750…right now he is at 220.  To give you an idea of how low that is…Cedar just had labs and her ANC was 3,000.  His HGB (hemoglobin was only 8.1-Cedar’s is 14.1), WBC (white blood count was 1.24-Cedar’s is 9.62), PLTE counts (were 250-Cedar’s were 304) are slowly on the rise, but we had to take him to the hospital last Wednesday as we were concerned about his side effects from such a low HGB.  We are so thankful for all the blood and platelets that have been donated!  They are there waiting for him…but it is still a balance for the MD to determine when to give blood/platelets as Jordan’s numbers indicated he needed them but they really look at the volume of side effects he is experiencing to determine whether to transfuse or not.  So it has felt a little like when he was first home from the hospital as his counts have been so low and he hasn’t been himself.  We are so thankful for his ability to push on and take advantage of times to play like a 2 year old!

My Grammy Parsons died on Feb 9th and we had planned to drive up to her funeral after his hospital day this Monday and spend the night in Turlock at Phil’s parent’s house.  His oncologist felt it was not wise to have him away from the hospital with his counts so low.  So Phil stayed home with Jordan and my brother Todd and I drove up with the other kids to my Grammas’ funeral.  Phil often tells people to pray for God’s grace on Jordan and I felt the results of this prayer in this situation.  The kids were really excited to spend the night at Teta’s house (Phil’s mom) and then a few kids were going to go to the funeral the next day with me.  I was not able to go to my Grandfather’s funeral (3 yrs ago today) as I was on hospital bed rest with the kids…so my wonderful husband told me we all needed to go to my Grandma’s funeral.  I did not know how to tell Jordan that he could not go now…even though he was originally going to just stay in Turlock by major hospitals with Phil and not go to the funeral.  I just told the kids that sometimes Jordan gets special treats from going to the hospital and sometimes the other kids get special treats.  I told them I know it is not fair…but that we needed to let Jordan know how proud we are of him for being so brave and fighting the baddies in his blood.  Then Jordan started screaming that he wanted more fish nuggets (obviously he was not really screaming about the nuggets) and I asked if any of the kids wanted to show kindness to Jordan and share their nuggets.  Cedar said “here you go Jordan” and then Jeremiah followed her lead and shared his (Jonah was already done =) ).

From Amy:

Hello All!  Happy New Year!

I know it has been forever since I have sent an update.  I think I was hibernating a bit and kinda didn’t know what I was thinking….and knew my mood impacts the “tone” of the update.  Also you feel like once you say he’s “doing good”, it will all turn on you and then you will be disappointed that he is doing worse or people will think this 3 year journey is over as he is in remission and “doing good”. I know it is not about how I am feeling…but it’s hard to simply report Jordan’s symptom’s/adjustment to chemo.  Also, retelling how Jordan is doing makes it all the more real so sometimes it is easier to just move onto the next day.

So to finally get to how Jordan is doing…he is doing great!  We were prepared for Jordan to be “bad” over Christmas like he was when he first came home from the hospital in November.  We were really thankful that he did not have to end up back in the hospital like 50% of the patients during this treatment phase.  It was an amazing Christmas present to be together for Christmas!   He had more energy than we anticipated and has slowly gained back some of his strength and energy to be able to play outside (of course we avoid the dirt because his counts are still really low).  My good friend who is an oncology nurse helped me understand that Jordan was really sick from cancer when he was admitted to the hospital in November.  Now that he is in remission, all the bone pain/cancer pain is gone and he is dealing with the effects of chemo.  We didn’t know what his pain, difficulty breathing, etc was coming from prior to being admitted to the hospital and so he was left without treatment and suffered greatly.  When I look back, I am so thankful that the long time of miss-diagnosis did not lead his cancer to spread.  I did not clue into any of that initially…but another reminder that God had His hand on Jordan in protecting him from the cancer spreading.

So the info we got at the hospital was correct, the first month is horrible and it gets better from there.  I held onto that hope but also did not want to get discouraged if it got “horrible” again.  There is comfort now that comes from experience of knowing how to manage Jordan’s side effects from chemo. Unfortunately, the lack of info/communication from the medical team is often the most difficult piece to deal with as your child suffers while you try to figure out what pieces of his medical puzzle were not handled and try to put them back together.

The kids are rough housing together again and Jordan holds his own.  I am hovering less over Jordan as he has a fairly stable gait.  We are more comfortable with the PICC line after 4 episodes of not being able to get it to flush and all the drama that ensues after that.  Now we are at a stage of weighing pros/cons of Jordan getting out and wearing his mask…but the busyness of of quads leads you to the comfort of a familiar routine at home.  I envisioned the 7 months of intensive treatment to require help like we needed when the kids were babies.  So I am thankful to be in a stage now that I can handle/keep them safe on my own if I need to (ie before we needed one person assigned to Jordan).  But mostly, I am so gratefully Jordan is not suffering as he did in the first month which made him want “mommy care” 24 hrs a day.

I am thankful to be out of the stage of wondering if another one of our kids will get ALL, wondering if our kids will be able to do the things I remember doing as a child (camping by the beach seems a long way away), wondering when every symptom that Jordan experiences does not have to analyzed/taken so seriously (ie rosey cheeks don’t freak me out that he has a fever and we will end up in the hospital), or not think about germs so much and worry about the impact on our kids in hearing “don’t touch that, it’s dirty” and using hand sanitizer all the time.  Wish I could say I put my trust in God each step of the way…but really…I am challenged by Jordan’s example of living life like a kid…not a kid with cancer.  Jordan’s example of not being fearful, not bummed that he can’t go out on special outings with mom and dad like the other kids go to the store, etc, or mater of factually saying “Grammy I did not spit-up today”…challenge me.  Watching him go up my parents stairs this weekend 3 times amazes me…a kid who came home from the hospital in Nov. so weak that he couldn’t even get himself off the floor, now pushing on his atrophied legs to get up the steps…challenges my faith, hope, and moves me once again to be so grateful for God’s protection and making Jordan into who he is.  What amazing children Phil and I are blessed with…I am challenged to be a better mother/wife/person through their personalities/character.  My main prayer is that my peace/mood would stop being based on how the kids are doing.  It is too crazy on Phil, kids, and grandparents, etc.  I should have learned these lessons already…but I know I need to mature into a woman who is modeling to her family where her confidence, hope, trust comes from.  I so want to be free of the anxiety that comes so quickly the minute his PICC line does not flush, when he is squirming and looks like he is going to throw-up, when failed scheduling causes you to wait until 2pm to allow a 2 year old to eat after having to have a scheduled spinal tap.

At night we sing Jesus Loves Me and it makes me cry because Jordan and Jonah sing “little ones to Him belong, they are weak but HE is strong.”  I so badly want that to be my confidence…Jordan is weak but God is strong…no matter if it is a “good day” and Jordan is able to be a 2 yr old or “bad day” and he is suffering like a child with cancer.  Jordan is a really shy, insightful, interested, direct, and determined kiddo…I am so thankful for the character I see in him and all of our kids.  I am so thankful for Phil’s strength, empathy for Jordan, example, hard work and sacrifice to take care of all of us and provide for the many needs.  I am so thankful for the 1,112 facebook members that are praying for Jordan.  I am so thankful for the meals that have come that have encouraged us to sit down as a family and eat together…and the amazement of seeing the kids eat things I gave up on trying to get them to eat and the veggies they have eaten so they can have the yummy dessert at the end=)  I am thankful for the guys that cut our lawn and rental houses lawn and took a load off Phil.  I am thankful for all the bald cold heads out there that think of Jordan when they touch their fuzzy heads=)  I am thankful for  all the thoughtfulness and creativity in finding ways to support us.  I am thankful for the meal/blood/information coordination…wow!  Thankful for all the trips down to CHLA, finding your way, paying for parking, and successfully or unsuccessfully (we know it is a crazy process!!!  thank you!) giving platelets or blood for Jordan or other kiddos that need it.  For all the encouragement cards, calls, emails, prayers.  Wish Jordan could understand more about all the people that deeply care about him and are praying and rooting for him.  But your support helps Phil and I and our families be filled so that we can give Jordan what he needs.

I feel like the hallmarks of the weeks are when Jordan’s episodes of poop issues/nausea decrease.  Also when we are able to stay on top of dehydration as he often does not want to eat or drink.  The HUGE relief in both of our eyes when we see our car in the parking structure at the end of the weekly clinic day and hearing Jordan say “I did it”.  Then finally being able to let him take his mask off and finally seeing him taking a nap on the ride home and knowing his guards are down and can relax as we are heading home.  Another high of the week is going to my parents house for a “special treat” to celebrate how brave Jordan was at the hospital that week and how well the other kids helped Jordan and mommy.  The other hallmark is when Jordan can say “no band aid today” which means…”I didn’t have to have a spinal tap this week and not be able to eat before anesthesia”.  Also the relief that comes in his eyes depending on the color of the liquid medicine as he knows which ones “taste yucky” and which ones “don’t make me spit-up”.  He looks forward to sitting on his Dad’s lap when he needs chemo meds or PICC line chemo as he gets to watch dinosaurs on Dad’s phone.  He will repeat “mommy and Dr. G can touch the PICC line but not Jordan or other kids”.  He is an amazing boy and we are so thankful for the balance he shows in understanding what is going on, but not letting it phase him.

Thank you so much for your sincere care, love, and prayers for our courageous little boy and for our family.  We are deeply touched, grateful, and blessed by you!  Continue to pray for his bodies strength to heal, endurance through chemo (3 years of treatment) and to be protected from sickness and bacteria infections.  So far no mouth sores…keep praying!

much love from our family,
Amy

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.

Amy sent this for all who are interested in what his treatment plan looks like for the next 2 months.
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Amy:
Jordan will get iv chemo at home (Ara-C) for 4 days for a total of 4 weeks within the next 63 days of this treatment cycle, called consolidation. He also gets a pill form of chemo, 6MP, for 14 days, then a break for 2 weeks, back on for 14 days. He had cyclophosphamide (chemo), today and will get it again on day 28 of this cycle.

Jordan is doing amazing…up at 5:30am…got anesthesia, a spinal tap and chemo, methotrexate…then 4 hours of hydration, 2 more chemos, then 4 hours of hydration and home to bed by 7:30pm! A lot in a day for a 2 year old with no nap! Thanks for your prayers! =) The new chemos main side effects are low blood counts 1-2 weeks post treatment, naseau, appetite loss, hair loss, and bladder irritation (ie watching for blood in urine). He will be back on vincocristine and peg asparaginase between day 14 and 28. Too much info…but I thought some people are interested in his treatment road map.
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Thanks for praying – don’t stop!

Tim got to spend the afternoon with Jordan and Amy today.  They were at the hospital as today was the start of Jordan’s next round of chemo.  A couple things of note…

First, answered prayers.  Jordan had a great week.  His body recovered really nicely, and once the steroids were out of his system, he really became himself again, in almost every way.  The only current signs that he’s been through a lot are his muscle weakness and his hair loss.  His sweet personality is back, his hunger is normal, and the whole family just generally had a good week.  I’ve posted more about it below from Tracey’s note (Amy’s cousin) on Facebook.  Perhaps most miraculously, Jordan’s immunity recovered well during his week off from chemo.  They took a blood test today to see how his immunity was doing (the ANC – absolute neutrophil count).  His count last week when he completed chemo was around 220.  It needed to be above 700 today for the doctors to approve him beginning the next round of chemo.  It was 890.  Amazing.

Tim reports that Jordan was really great in the hospital today – well behaved, calm, and in very good spirits.  It was a long day – about 10 hours with the spinal tap, the chemo, blood tests, and everything else.  Tim said it was really good to see Jordan being himself again.  They played with cars and watched some videos together, and it sounds like Tim did a good job of distracting him.  I’ve posted some pictures below that Tim took while they were together.

Tim also said that Amy was in good spirits today.  She is optimistic and doing well after the good week.  Even though 50% of kids end up back in the hospital during this phase of chemo (usually due to their compromised immunity), it almost seems as if the worst is over.  I think the chemo is now less daunting than the steroids…

Jordan really is losing his hair.  Let’s pray that’s the only major side effect of chemo that he experiences.  Sounds like next week, Phil, Jonah, and Jeremiah are all going to shave their heads with Jordan.  Solidarity.  Hopefully, we’ll get pictures. 

Here’s (most of) the note from Tracey (she wrote it yesterday) – with prayer requests at the end:

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The second phase of chemo is a completely different chemo medicine – one that is, supposedly, much tougher on the system. According to his doctors, 50% of kids end up back in the hospital during this phase of treatment, as it will knock out what remains of Jordan’s immune system. He is expected to need blood and platelets frequently during this phase (more about that later). Jordan will be at the hospital tomorrow to have a spinal tap, and if his ANC (absolute neutrophil count – which basically measures the amount of immune system he has left) is above 750, he will start the second phase of his chemo treatment. He will have one round of chemo at the hospital tomorrow, and then Amy will administer chemo for 4 days at home through his PICC line….so, it sounds like it will be 5 days on, 2 days off. He is scheduled to be back at the hospital every Wednesday.

Amy said that this week has been a big relief. The good news about his blast count last week, coupled with a good week for Jordan, has allowed the family a bit of breathing room before the second phase begins. After being released from the hospital last week, Phil ran out and bought a Christmas tree, and they were able to decorate it together as a family and enjoy one another. It’s been a good time for their family to appreciate the little things in life. Amy said that a couple of days ago, all four of the kids were dancing to “The Bear Necessities” and that she and Phil were just finding so much joy in their kids. They had their family Christmas with Pa, Grammy, Great-Grammy and Great-Granddad on Sunday – as they don’t know how Jordan will feel on Christmas day. However, the greatest Christmas miracle is to have Jordan’s personality back! The remission diagnosis allowed Jordan to get a reprieve from not only the chemo, but the prednisone (steroid) which was making him clingy, cranky, aggressive, sleepless (which meant that Mommy and Jonah didn’t sleep much either) and ravenously hungry all the time. Jordan’s giggles and inquisitiveness returned this week – and this has done a lot for his family! We are thankful.

After talking with Amy today, it was hit home to me that just because he is in “remission” does not mean that this precious little boy isn’t still suffering from the effects of the chemo. Amy & Phil say that this is the hardest part – the fact that they have to watch their child suffer. His last week of chemo was especially difficult – he was so uncomfortable and upset, and there was little that could be done to ease his pain. Amy says that she couldn’t even go to the bathroom without him standing outside the door saying “mommy, mommy, mommy.” His hair is now starting to fall out, and he has a hard time chewing anything hard. He can still walk around and play with his siblings, however, if he does get on the ground, he can’t get back up. In the past, he’s just yelled for mom’s help, but in the past week, he’s had the energy to make it into a game and go crawling to mom’s legs and say “Mommy, I got you!” The hard part of this is that just as he is starting to feel like himself – he has to go back on the chemo tomorrow.

So … here is a long list of prayer requests as we start Phase 2!

Prayer Requests from Amy:
• Amy says the number one prayer request for their family is for Phil and the pressure on his shoulders. In addition to his work at the church, Phil works two other “side” jobs to make ends meet for his family. The addition of a child with cancer brings extra worry, but also additional financial strain. Pray that he would be granted peace and given grace as he provides for his family. Please make this your prayer priority.

• Pray that CCS (California Children’s Services) will cover Jordan and assist with the medical expenses that their PPO won’t cover.

• Pray for supernatural protection for Jordan from infection. Pray that he will be part of the 50% of kids that can remain at home during these next 2 months of treatment and keep a normal schedule.

• Pray that Jordan can still have glimpses of his childhood in the midst of all this.

• Pray that the talk around Jordan remains hopeful.

• Pray for grace, hope, patience, flexibility and protection throughout the next 3 years.

Additional Prayer Requests:
• Jordan is still, understandably, very anxious about everything to do with the hospital. Amy said that when they drove up to the hospital last Wednesday, Jordan was excited to see the Christmas tree and all the lights outside…but, the second they walked into the hospital, he started screaming. Pray for that God will calm his fears and give him peace.

• This family needs SLEEP! Pray that Jordan will be able to sleep peacefully, which will allow Amy, Jonah (who shares a room with Jordan), and the rest of the family to get the sleep they need to remain healthy!

• Amy is struggling with allergies, and is still wearing a mask when she comes in close proximity to Jordan. Apparently, Jonah also has a runny nose…which is a bit of a concern. Pray for relief from allergies – and that these symptoms are just allergies and not colds.

• Pray that all the kiddos would keep responding well and with maturity beyond their years. Pray for wisdom for Amy as she continues to explain to them what is happening with Jordan.

• Pray that the prayer support Jordan’s illness has generated will continue throughout his full 3 years of treatment.

Phil & Amy’s church is coordinating the first wave of blood and platelet donations for Jordan, as he will need both over this next phase. If you go to Life Bible Fellowship and have an O+ blood type, you will be hearing more about this as time goes on. If you don’t go to the church, hang tight! We will send out another call if/when Jordan is in need. Remember, there are 3 ½ years ahead of us where we may still need you!

Phil’s friends are in the process of setting up a foundation of some sort to help ease the financial burden of Jordan’s cancer treatment. Things are still in the works, and I will update with specifics as soon as I have them.

Thank you so much for praying and for loving this family! I know that they feel peace knowing that Jordan is being prayed for at every moment.

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Jordan smiling

Jordan playing

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