One Year Chemo Free...And Counting

December 14, 2012

I dread the feeling of fear.  Is that redundant?

Sometimes we have fear as a warning to not do something.  Sometimes it is unwarranted fear for a risk that we should take.  The fear I dread is the sick feeling in the pit of your stomach that is there for days or weeks that is not alleviated.  It is painful and it wears you down.  The kind of fear that keeps you awake at night.  I don't want that kind of fear.  I pray daily for relief from that kind of fear.

We have still had some ups and downs with Jordon's health.

Since the last post, Jordon has continued to test positive for strep.  I believe in total he has been on 5 rounds of antibiotics.  We have been to St. Louis to see his oncology team several times and Jordon has been through several rounds of blood test.  Each time he has a blood test he has the standard CBC (complete blood count) with some additional test added.  At one point they took his IgG levels.  His IgG levels tell the doctors whether or not his immune system is strong enough to fight off infections as well as keep viruses away.  Well, Jordon's IgG subclass 1 was fairly low.  This is a good indicator as to why he continues to get strep.  Jordon also saw an ENT.  The ENT told us that Jordon did not qualify for a tonsilectomy because he hadn't had a fever with the strep infections and he had to have 7 DIFFERENT strep infections in a year.  He was declaring Jordons the same strep infection since he did not have a negative test in between times. 

Tuesday, the 11th of December Jordon woke up with a fever.  This is the very first fever he has had since ending treatment in February and I can't even remember the last one he had during treatment.  I knew and have thought about how hard it would be if and when he got his first fever after treatment.  Of course, children get fevers.  But in a child that has had cancer before it can be alarming.  Jordon had also been experiencing leg pain, headaches and stomach aches.  I was hoping for a mild case of the flu with no complications.

Once again, I made an appointment with Jordon's pediatrician.  We had a full day of appointments and test.  Blood work, 4 x-rays, doctor visit and a stop for ice cream.  First, Jordon was positive for strep AGAIN!  This is the 6th time in the last several weeks or since October. X-rays looked great/normal.  Lungs looked normal, LDH (this was over 3 times higher than normal when he was diagnosed) looked normal, uric acid normal, and sedimentary rate looked normal. Blood work for the most part looked normal.  His white blood count has been almost normal, but this time was low.  Although not concerning to the doctors, this is one of those times fear overwhelmed me.  The combination of leg pain, a weight loss of almost 8 pounds, being negative for flu, and his low white blood count (which is produced in your bone marrow) concerns me. I told his oncologist of my concerns and she said that typically they would agree but the rest of his blood work was beautiful and the only way to confirm would be to do a bone marrow biopsy.  Since there was no other indication of relapse, it would be more of a risk to do a bone marrow aspiration that to not.

This is so hard.  I don't want to ever doubt The Lord and how great He is.  I do worry that something will happen and I will be angry with God.  I pray daily that no matter what, the pain will never be so great I will have doubt.  So in part, I have fear for my sons health.  And in part I have fear that my pain will be so great I will never get over it.  We continue to thank you for prayers for our sons health and prayers for our peace that passes understanding.  We love the Lord and know that He loves Jordon more than we can ever love Him.  I have peace knowing that the Lord's will is perfect.

NOTICE: I thought I had posted the above information in December.  I will continue a new post below with what has happened since. 

January 21, 2013

After Jordon's last illness his oncology team decided to begin immunotherapy.  Since his IgG levels were low last time they were drawn, and he continued to get infections, it appeared that his immune system was damaged or had not bounced back on its own since treatment and he was unable to fight off infections on his own (viral included which solely depends on immune system resolution rather than antibiotics to aid healing).  So on December 21st we went to Children's to have his first infusion of gamma globulin which is created out of human blood donations and spun down to their immunoglobulins or immune fighting part of the blood.  The infusion consist of a pigtailed line for medication, two sub-q needles, and a medication pump.  All of this can be done at home.  Jordon may be the only child at Children's receiving such therapy as most children are on chemotherapy and still have their ports/broviac.  Therefore they receive it intravenously.  The doctors had to call in a nurse from another treatment facility to provide the training and first infusion.  Although she was certified in doing this, it was her first time to ever preformed on an actual patient.  This made me a bit nervous but we learned together.  After about 2 hours preparation and reading through the instructions, we finally started the infusion.  Jordon said he had a dull pain through most of the infusion and it gave him a headache, but we completed it in a little over an hour.  Jordon had his second infusion on January 4th and a nurse came to our house to guide us through it so that we are comfortable enough to eventually do it on our own.  She had done this type on infusion several times before and it went MUCH more smoothly at home.  We were able to slow the infusion time down to 2 1/2 hours, which caused no pain for Jordon and no headache.  The first time he had a rash at the infusion site for several days after.  The second time he got large lumps at the infusion site (golf ball size) but they went down later that night and no rash the next day. The home health nurse also monitored for vitals and was knowledgeable in making everything go smoothly.  We are close to doing these infusion by ourselves at home.  The entire process takes about 3-4 hours every two weeks, but so far has been well worth it!!!! Jordon has been feeling and looking great!  He has gained nearly 10 pounds!  His appetite is better and his activity level is better too!  He still has some lymph nodes in his neck area, but the doctor has once indicated that they may always be enlarged.  

Tomorrow we go to Childrens for a full day of appointments.  Jordon will get his "one year" off treatment PET scan (first one in 6 months), echo, blood work, and see his oncologist.  Yes, Jordon has been off treatment for nearly a YEAR.  This is huge!  Of course every day that he remains is remission is wonderful!  

Praise the Lord for continued health and knowledgeable doctors and nurses.  Praise the Lord for prayer, comfort, and peace.  Continued prayers for health.  

My computer is finally back to normal (kinda).  So I have a few pics to share to show how amazing Jordon looks and how far someone can change and health can improve in such a short time.  Love to all of you and Happy New Year!