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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 =) ).

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

Here’s the latest update from Tim…

Jordan is in remission.  It’s such good news.  For a couple of reasons.  Firstly, it means he can come off of the steroids.  Which is REALLY, REALLY good news.  The steroids have apparently been giving Jordan more trouble than the chemo lately.  They’ve been making him feel hungry, even when he’s overfull, so he’s been eating and eating and his tummy has been distended.  The steroids make his bones hurt, especially his legs, so he fusses with pain, and can’t walk or move around much.  And they mess with his personality, making him agitated and short-tempered.  So coming off the steroids means Jordan gets to become himself again.  Secondly, the remission means that Jordan also gets a few days off from the chemo.  The break will give his body a chance to recuperate a bit, get his blood counts back up, and recover some immunity…before it gets knocked out again.  More on that in a bit…

Jordan came through his bone marrow extraction procedure really well, and as usual, is generally just being a trooper.  In order to be considered “in remission,” Jordan’s blast cell percentage needed to be 5% or less.  The initial tests on his blood and bone marrow showed that his blast percentage was 0%.  That doesn’t mean that there are no blast cells at all – it just means that less than 1% of his white blood cells are blast cells.  That’s really great.

More tests on his bone marrow are being done this week – some of them take a little more time.  The tests that are being done will reveal whether Jordan is a “Category 1.”  If he is, it will be even better news, as it will mean that Jordan really is fighting the cancer well, and that the chances of the cancer coming back are minimal.  If he is a Category 2 or higher, it’s still not bad news.  But each number up means a slightly higher risk of the cancer returning.  It has already been shown that Jordan has a genetic advantage in fighting the cancer – genetically speaking, his body is adept at responding to the chemo treatments and beating the cancer back.  I’ll let you know as soon as I hear the results of this latest test.

Regarding Jordan’s immunity…
In a week or so, Jordan’s next round of chemo will start.  It’s apparently the toughest round of chemo he will face.  Now that he’s in remission, they need to keep him that way.  So, the next round is extremely aggressive to make sure the cancer doesn’t have even the remotest chance of getting a foothold again (even if he is a Category 1).  This means that his immunity will be completely knocked out.  This is usually the phase where kids end up back in the hospital.  They scrape a knee, and it just won’t heal, or they catch the tiniest bug, and it becomes a life-threatening infection…because the chemo doesn’t just kill the bad cells.  I’m told that the worst of it – due to Jordan’s chemo schedule – may happen around Christmas-time.

So – prayers:

• Pray that Jordan really is a Category 1 – the ideal genetic makeup and body type to tolerate the chemo and keep the cancer at bay.
• Pray that the next few days, as Jordan is freed from the steroids and gets a break from the chemo, that his body will recuperate quickly and fully and be heartily strengthened.
• Pray that the next round of chemo will go easy on him, that the side effects will be minimized, that his immunity will miraculously remain strong, and that he will continue to be protected from accidents, illnesses, and infections throughout his treatment.
• Pray that Jordan’s suffering will not peak or increase around Christmas, and that Christmas will be a time of rest and joy for the Shahbaz family.
• Pray that the doctors will continue to have wisdom in treating Jordan.
• Pray for Phil and Amy, for ongoing strength and peace.  Pray for perfect health for both of them.  Pray that their finances would continue to be supernaturally sound.
• Pray for Jonah, Jeremiah, and Cedar, that they will continue to find gentleness, patience, affection, and love for Jordan, that they will help him play and feel normal, and that they will feel loved and cared for and never envious of the attention Jordan receives.
• Pray for all the friends and family surrounding the Shahbaz family, those that are in and around Phil, Amy, and the kids, and those that, due to the quarantine, can’t be there in person, but are delivering food and other support and encouragement, that they will continue to have wisdom to know how to help, and strength to keep helping.
• Pray that we will all continue to know how to pray to uphold this precious boy and this beautiful family.

Much love and big hugs to you all.

Don’t have all the details yet – I’ll share them as I get them. I do know that Jordan’s tests today showed that his cancer is in remission.

So, you know. Prayer works. Hallelujah.

But he’s not out of the woods yet. He has to stay in remission, and continue doing chemo, for 3 more years. And we all need to keep praying him through it.

Stay tuned. I’m getting a full update tomorrow, and will share as soon as I can.

Amy sent us the following update via email last night…The info from Kristi at the bottom is really helpful in terms of specific medical details.

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My friend Kristi is an oncology RN and is a mom of 4…the combo is such a blessing in helping me figure out this new world of ALL.  I think this email would be helpful for anyone interested..

Today we ended up at the ER because Jordan’s PIC line would not flush.  We have to flush it daily and have been having issues with blood coming into the line above the clamp and had been on the phone with the clinic on friday and the home health RN came to check it on friday pm…but we were not able to avoid the clog.  Anyways…4 hours later…we were home which is a really speedie trip to CHLA so we are thankful. Wed we will go for Jordan’s first clinic visit and we assume he will get red blood and platelet transfusion because his counts were on the line at discharge and he shows the signs of the numbers most likely being lower.  So pray for as smooth of a clinic day as can be expected for our first trip, the day before Thanksgiving, and all the patients they are fitting in because of the holiday.  Jordan’s scheduled Clinic day is thursday so they had to move it up a day.
He is thriving at being at home…solid sleep at night mostly (only one night he was up at 5am screaming, I think because of “crazy legs” due to nerve pain, and slept on me until the other kids got up.  His “old man” walking has improved a lot thanks to his siblings and the comfort of a carpeted play room.  He still struggles to walk the “long” distance to his bed and up a few steps to brush his teeth, but has come along way since his hobbling in the hospital.  He is eating well and lets you know when his tummy is nauseous by refusing to eat.  he usually will accept crackers during that time.  We are really blessed that he is a good communicator for a 2 and a half year old and lets you know when the stimulation of 3 siblings is too much and needs some quiet time in the other room with mom.  We have conquered the tub with Pic line wrapped in a bag…hopefully he will enjoy his tubby time soon…it is still a bit weird for him not to tub with his siblings and have all the taping, etc of his arm.
Pray that I get rid of my congestion soon.  I have been wearing a mask around him for a week and would love to not have to put my glasses on, mask on, sanitize, etc all in the middle of the night to check on him. But it is worth it…he hasn’t caught anything from me yet…please pray that would continue.  I think I will be his worst germ during this whole journey as I usually get sick when the weather changes, I don’t get enough sleep, or am stressed.  Therefore, poor guy, I have been sick for his major medical days ie. his discharge home from the NICU (I had a mask on and couldn’t be there) and now.  On a sad but funny note, when we came home with Jordan on Thursday all the kids were excited and jumping around and then when we opened the door, they all stopped cheering and Jonah screamed and ran an hide and cried because they were so scared of my mask.  So Jordan missed his welcome home because Mommy looked so scary!  Since then they have all warmed up to me, but Jonah still won’t let me hold him close when I have the mask on.  None of the kiddos will cave into our tricks of making the mask fun: pretending it is darth vader, making into a purse/hat…none of them will play with it. But they are having fun pretending they are a doctor and taking temps, listening to their hearts, etc so that has been positive.  The home health nurse came by and all but Jonah would let he listen to their hearts.  They are really cute as they peek over the gate and try to figure out what is going on with Jordan.
The other kids are doing great and are being so considerate of Jordan.  They are so thoughtful and their unprompted prayers for Jordan bless my heart.  None of them are jealous of the extra mommy attention he is getting.  They all find their ways to “help Mommy” help Jordan and they are really pleased with themselves.  What a blessing family is that have continued the “routine” while Jordan was in the hospital…the other kids really have been adapting better than I anticipated.
Pray for Phil as he goes back to his church work tom.  He has been doing real estate during this time.  Pray that the property he has been working on will close. It would be a huge blessing for the family looking for the condo and for us too!
I will write more later when I am ready to tap into my emotions.  I haven’t called anyone back yet because I not ready to go there yet.  I need to get the home front in order/rountine established first=)  For now…I am task orienting through things.

Thanks everyone for your love and prayers=)

love,
amy

— On Sat, 11/21/09, kristin terpstra wrote:

From: kristin terpstra
Subject: Information for cancer patients and those who love them.
To: “amy shahbaz”, “Philip Shahbaz”
Date: Saturday, November 21, 2009, 2:40 PM

Dear Amy and Phil,

Here is some information that I hope will help you and your family and friends as you adjust to the journey you are on with Leukemia.  I have always felt that knowing what to expect and preparing for it reduces certain anxieties.  Just hearing the word Cancer can make people anxious.  There are also a lot of misconceptions out there.  My job in the past was to prepare patients and families for chemotherapy treatment and how to live with cancer.

First of all I think a basic understanding of how chemotherapy works is important.  This is very simple but I think you’ll get the idea.  Cancer occurs when there is a mutation within a normal cell.  This new mutated cell starts to replicate, or reproduce copies of itself as fast as it can.  We detect cancers when they have grown to a point of disruption in the body.  With Jordan, his bone marrow went haywire and started kicking out immature types of white blood cells called blastocysts.  These cells are not capable of maturing normally into a functioning part of his immune system.  As each cell made more his normal funtioning hematopoetic (or blood making) system became overwhelmed.  Eventually causing him to be short of breath, because of a lack of red cells, pale, and have intermittent fevers as his body’s response to these bad cells.  They essentially choked out the normal healthy cells in his blood.  With Acute Leukemia this cell growth
comes on very rapidly.  This  may sound like a bad thing, but it actually is not.  Often, the faster a cancer grows, the easier it is to kill.

Here is my little explanation of why fast growing cancers are easier to kill.  Cells go through several distinct phases.  There are periods of rest and periods of growth or activity.  Picture the cell as a house.  During times of rest we typically leave our houses locked up tight.  It is hard to get into a locked house.  But during the day as there is activity the doors and windows may be open.  Picture the chemotherapies as people that want to get into the house (we’ll call them Vinny and Daun).  It is far easier for them to enter the house during the day when it is opened.  The house has become vulnerable.  Cells basically have to open up to replicate thus leaving themselves vulnerable to attack from chemotherapy.  The slower that a cancer grows, the less time it spends in a vulnerable state.  The faster the cancer grows, the more time it is open for attack.  Chemotherapy typically disrupts some portion of cellular growth.  Different drugs disrupt the cells at different stages.  This is why combination, or more than one drug, therapy is usually used.  We want to hit the bad cells in every way that we can.

The unfortunate thing about chemotherapy is that there are side effects.  The reason that we have side effects is because chemo is not like a “smart” bomb.  We can’t direct it only to the bad guys.  Researchers are working on this and it is getting better with targeted therapies and biologic agents.  But for now some patients are still stuck with the traditional stuff.  There are several cells in our bodies that are rapidly growing every day.  They are perfectly normal and doing exectly what God designed them to do.  Unfortunately chemo can’t tell the difference between the fast growing cancer cells and the normal cells in Jordan’s body.  Think of your hair, nails, entire digestive tract, and your bone marrow.  Hair on our heads is always growing.  That is why chemo causes hair loss. (interesting side note for people with arm and leg hair, that hair grows slower and does not always go away)  Some chemos affect the finger and toe nails.  The
digestive tract from your lips to your bottom is lined with rapidly growing cells.  If you have ever cut the inside of your cheek, you notice that it heals very fast, much faster than a cut on your arm.  That is why he may get mouth sores, nausea, vomiting and possibly issues with constipation or diarrhea(yep, if its not one its the other).  Our Bone Marrow is constantly making us a fresh supply of red blood cells, platelets, and white blood cells.  We want to wipe out Jordan’s bad blasts but all those cells are going to get hit.  That is why he may need blood and platelet transfusions.  Without platelets you can’t form clots and become vulnerable to bleeding and severe bruising.  Without enough red blood cells you can’t carry oxygen to your tissues.  The doctors will be monitoring Jordan’s blood counts closely and transfusing him as needed.  There are also affects from certain drugs on nerves and bones that can cause pain.  I know this all sounds like
a lot of bad stuff and of course we pray that the side effects will be minimal.  But I have always told patients to look at side effects as a sign that the chemo is doing something and the body is responding to these toxins as it was designed to.  There are many medications that help manage side effects. The  good news is that healthy cells have the ability to repair.  Cancer cells do not have that ability.  We just need to “get ‘em all”!!!!

During this induction phase of chemotherapy Jordan is very vulnerable to infection.  His cancer is essentially in his immune system, so that will be nearly wiped out.  I say nearly wiped out, but not completely wiped out.  There are several types of White Blood cells that comprise our immune system.  Jordan’s issue is with one of them.  He will still have some ability to fight infection, just not like a healthy person.  To contrast this, a patient getting a bone marrow transplant has to be completely wiped clean of any White blood cells whatsoever.  That is why these people are kept in the hospital and have few if any visitors.  Jordan will be vulnerable but still have some immune system.  This is why he can be at home.  His home is perhaps the safest place for him.  Hospitals have all number of bugs, his own environment has bugs that he has lived with his whole life.  However, he needs to be protected.  If anyone is sick, has been with someone sick, or has recently been immunized they need to steer clear of Jordan. (and as a courtesy, the rest of the family too)  The common cold can kill a cancer patient with a compromised immune system.  Jordan does not need a completely sterile environment but he does need common sense protection from bacteria and viruses.  Good handwashing, appropriately cooked foods, limited exposure to non-family members, and a clean house will go a long way to protecting him.  Please ask your friends and family to be overly considerate of this.  Do not accept food or gifts from a home with a sick child (or adult for that matter).  Ask people coming into the house to remove their shoes as they can carry a lot of bacteria.

I’m sure you have heard the term ANC, or Absolute Neutrophil Count.  It is a calculation of how much of an immune system a person has.  Don’t confuse this with white blood cell count, this is more precise.  They will calculate his ANC to tell you if he is neutropenic, or at greater risk for infection as well as use it as a guide to determine if it safe for him to have chemotherapy.  This count is at it lowest typically 10 days after chemo.  When you are getting chemo weekly you are taking another hit before the counts have even reached their lowest point.  That is why his risk of infection will be greater as he has more treatments.  Each treatment will knock him a little lower than before.  The side effects can follow this pattern as well.  Some are cumulative.  Hair loss is usually like this.  You may see it thin and then come in clumps as he goes through more treatments.

There are concerns with the secretions of people recieving chemotherapy.  What goes in your body must come out.  However, Jordan does not need to be treated like contamination from Chernobyl!  The amounts of chemo in his urine, stool, tears, sweat, saliva, and vomit in the 24 hours after chemo are small amounts.  Exposure over a great deal of time is not good.  This is why chemo nurses wear those gowns and gloves and masks during administration.  They are giving chemo all the time and always at risk for exposure.  Some patients go home with chemo pumps.  These people have to be more careful because there is risk with spilling the drugs etc.  Jordan does not have this.  I’d be careful with his pee and poo to the point of flushing with the lid down or throwing diapers out immediately.  Amy, if you were pregnant there would be greater concern, but for the most part the exposure is minimal and I don’t believe the other kids are into playing in the toilet or drinking Jordan’s pee.  Keep Sala away from the toilet too.  But as far as throwing away stuff he vomits on, I wouldn’t think you need to go that far.  The half life of most chemo drugs is 24 hours or less, some are longer. ( a half life is the amount of time it takes for the body to rid itself of half of the drug)  Ask your oncologist if there are further precautions you should take with the toddlers.

Jordan needs as much normalcy as possible with a good dose of common sense protection from viruses and bacteria.

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Thanks for reading, and please continue to keep Jordan and the rest of the Shahbaz family in your prayers!

Got a little more info from Tim tonight, so read on…

First, Jordan is really doing well.  He’s pooping really consistently and generally continues to seem like himself.  So, praises.  Even better?  His blast percentage was taken again today – and it’s a 1.  ONE.  The number right above zero.  It was a 67.  Then 16.  Now 1.  PRAISES.

But tomorrow, it has to be a zero.  Tomorrow is the big day.  In the morning, they’re going to put him under, extract bone marrow, and do a chemo session.  Then he’ll go back to his room to recover.  Once he’s fully recovered, they’re going to release him to go home.

The test results on the bone marrow will come in later, maybe tomorrow evening, maybe Friday.  And the numbers need to be zero.  Jordan needs to be cancer free.  Period.

And he needs to stay cancer free for another 3 years.  Period.

So, let’s pray.

• Jordan’s blood pressure is now reading just a little bit low.  Nothing too concerning, but pray that he just evens right out and stays put.
• Pray that in the next 12 hours, Jordan’s white blood cell count and blast percentage show ZERO signs of cancer.  He’s close.  Let’s pray him all the way.
• Pray that Jordan recover quickly and easily from the anesthesia tomorrow, and suffer no ill side effects.
• Pray that the Shahbaz household is prepared for Jordan’s arrival on a couple of fronts.  Firstly, that Cedar, Jeremiah, and Jonah would all have a special measure of selflessness, grace and tenderness toward Jordan, and somehow understand his special needs.  Secondly, that Jordan would miraculously be protected (over the next 3 years) from bumps and bruises, germs and infections, etc.  Thirdly, that all the adults caring for Jordan would supernaturally have peace, strength and wisdom – to deal with the schedule and the special needs, to know when to lavish attention and when to discipline, to know when Jordan is okay at home or if he needs special medical attention, to know how to protect Jordan while giving him normalcy and stability and just the right amount of freedom, and to know how to take care of themselves.  These are not small requests.  Fortunately, our God is not small.
• The next week or so would, under normal circumstances, be the time that Jordan really begins to feel the effects of the chemotherapy.  Some of the side effects include hair loss, nausea, nerve and joint pain, weakness, all manner of aches and pains, paralysis, and many more.  It can make an adult body feel excruciatingly miserable, and can virtually destroy a child’s body.  I feel really strongly that we are to pray that the side effects of the chemo are not just minimized, but miraculously MISSING over the course of the next 3 years.  Pray that his body just somehow tolerates the poisons, without pain and suffering.  Pray and believe.
• Pray that Jordan will continue to eat and sleep and stay active to keep his body strong and healthy.  It will get harder if the chemo really kicks in – but he needs to stay strong.  The constant interruptions at the hospital have made sleep hard to come by, but at home this should be better.  Pray that it is.

Will update again tomorrow with any news we can muster.  And certainly again when the test results come in.  Until then, we’re praying…

Not much to report tonight. Tim says that Jordan had a good poop today, and came through a chemotherapy session very well. No news is good news.

So – thank you for praying. I hope you can all see how well it’s working. Don’t stop. Diligence and perseverance, friends. Jordan has a long way to go, and we’ll be with him every step.

Another good day.  So, I’ll start by thanking of all of you for your prayers and good thoughts and wishes.  Keep it coming.

Haven’t heard about any blood numbers today, but a couple things to celebrate, and then more prayer requests.

Last night, after I posted about the good news and numbers, things took a turn, and Jordan had a really tough night.  He got really nauseated and threw up his meds and that hot dog he had eaten.  His blood pressure spiked, and once again, he got no rest.  But this morning, he was doing better, his blood pressure was back to normal (and he’s apparently getting a little better about having it taken), and he was in very good spirits.  In fact, Phil reported that throughout the day, Jordan played rather energetically, and even laughed out loud a few times.  He also ate 3 meals, and hasn’t thrown up his meds.  Finally, at around 7:15 tonight, Jordan feel asleep, and was sleeping really hard as of around 9 pm when Tim and Phil talked.

Around midnight tonight, they are hoping that Jordan will still be asleep, and that they can take his blood pressure (around his lower leg) without waking him up.  If Jordan stays asleep, and his blood pressure is normal, they can leave the room and continue to let him sleep.  I don’t think I need to tell you how important this is – Jordan needs rest, his body needs rest, and Amy needs rest.  Tonight is crucial, and could be a turning point.  If he wakes up and can’t go back to sleep, or if his blood pressure is high or low when they take it, he’ll HAVE to be awakened to take more meds, and undergo additional blood pressure tests.  So, if you’re awake and reading this on Saturday night, please pray RIGHT NOW that Jordan will sleep soundly through the night, and that his blood pressure will be normal.

Additional prayer requests:

• Jordan is on heavy steroids right now to help his body tolerate the chemotherapy.  The steroids can have yukky side effects, including making his mood and personality really different.  They can make him angry and aggressive and very moody.  Please pray that he will not experience these side effects, that his personality will remain intact, and that the steroids will do only good work in his body.
• Please pray that Jordan will continue to eat and poop – two very important things to keep his body strong enough to tolerate the chemo, and to insure he can go home from the hospital.
• Please pray that Amy and Phil will be strengthened, despite their fears, anxiety, and lack of sleep.
• Please pray that all of the friends and family surrounding Phil and Amy and Jordan will know exactly what to do and how to help them.  Pray that they will all be filled with hope and wisdom.
• Please continue to pray that the side effects of the chemo would be miraculously minimized in Jordan’s body.
• Please continue to pray that the chemo treatments work to free Jordan of cancerous cells and that ongoing blood and marrow tests show him to be in remission, now and forever.
• And finally, pray that the Shahbaz household would be prepared for Jordan’s homecoming.  Having Jordan home will be a wonderful thing (whether it happens on Monday or later in the week) for many reasons.  But it will also be complicated as they will need to protect him and his compromised immune system from germs and illness, bumps and bruises, etc., while helping him feel some sense of normalcy at home.  They will need to work his outpatient chemotherapy sessions into their already hectic schedules, and be prepared for any at-home emergencies, like blood-pressure spikes, fevers, or vomiting.  It’s one thing to deal with those at the hospital surrounded by trained personnel, and quite another to have him at home…

Thank you again for reading, and for surrounding the Shahbaz family with love, prayer, and support.

On another note, I did get confirmation that our friends great-granddaughter, who passed away the other day, died of SIDS.  We don’t know exactly how old she was.  Her name was Aurora.  Please keep Mark and Roseanne (great-grandparents), Holly and David (grandparents) and Ashley and her husband (parents) in your prayers, too.  They are really hurting.