11-23-09 Jordan Update – from Amy

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!

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