Monday, March 17, 2014


Reid is doing well.  He is sitting on the floor next to me playing with some of his new toys from his birthday party.  He is feeling good today:)

When we left St. Jude after Reid's surgery, our oncologist told us that they were still waiting on the pathology to come back on the tumor.  He said that sometimes tumors "differentiate" themselves.  Lance and I didn't give it much thought.  When we traveled back to St. Jude the next week, we knew that Reid was going to have a PET scan and a head and neck CT to make sure there were no other hidden cancer cells.  We also knew that he was going to get a port again and start his first chemo.  What we didn't know was that he was going to get a COMPLETELY DIFFERENT diagnosis. Reid's original diagnosis was spindle cell sarcoma UNDIFFERENTIATED.  Basically what it means is that the cells looked like spindle cells under the microscope, but it was not a SPECIFIC type of sarcoma.  NOW it is a specific type of sarcoma.  It is now embryonal rhabdomyosarcoma.  Every single one of Reid's scans came back completely clear, and we know the tumor was removed on February 24.  We know that the MRI done 2 days later was clear.  (Praise God!) So, now we do chemo and radiation again to kill any microscopic cells that may be left behind. 

Orbital rhabdomyosarcoma has a very high cure rate, but because this is a recurrence, no one is throwing out any kind of statistics.  But that's okay because only God in Heaven above is the Great Physician.  Only he knows the days that we are granted here on earth. We continue to cry out to God for complete healing for our son.  Reid had his first round of chemo at St. Jude on March 7.  He handled it very well.  He did not get sick at all.  We were able to come back to Baton Rouge on Wednesday.  We take Reid to the St. Jude affiliate clinic in Baton Rouge once a week for one medicine that takes about 5 minutes to administer through his port.  They also will check his counts weekly to make sure he is doing well with all of his red blood counts, white blood counts and platelets.

He will have 14 total rounds of chemo.  They will be administered every 3 weeks.  We will be at home in Baton Rouge for all of the chemo.  Over the summer we will travel to St. Jude for radiation.  We aren't sure how many weeks that will last.  Radiation this time will be different.  He will have it every weekday for up to 6 weeks. We are not sure of the duration at this point.  His radiation oncologist is determining the duration based on the amount of radiation that he had last time.

All of this news has been completely overwhelming to us.  It is heartbreaking, devastating, exhausting and every other negative word that you can think of.  Most of all it is unfair that a child would ever have to go through this twice.  Please keep Reid in your prayers and pray for Lance and me as well.  It is very difficult to watch your child be mad, sad, grumpy, and tired, and there is nothing that you can do to change it.  My heart is broken into a thousand pieces again. Pray for Wyatt to be able to stay sane with two crazy parents.  Pray that he knows how loved he is.

We pray for total and complete healing on earth for Reid.  God gave him to us 5 years ago this week.  We are so thankful for the love and laughter that he has brought into our family.  Please continually ask the Lord for his healing.  Pray that the next several months will be as easy as possible for all of us.

"Teach me Your way, O Lord,
And lead me in a level path
Because of my foes.
Do not deliver me over to the desire of my adversaries,
For false witnesses have risen against me,
And such as breathe out violence.
I would have despaired unless I had believed that I would see the goodness of the Lord
In the land of the living.
Wait for the Lord;
Be strong and let your heart take courage;
Yes, wait for the Lord."                           Psalm 27:11-14

We met Bree (aka Cheering for Breanna) while we were at St. Jude.  She is a Dutchtown Middle School student who has been at St. Jude since June of last year.  She has Acute Myeloid Leukemia (AML).  She has gone into the hospital today to prepare to start her SECOND bone marrow transplant.  This process is long (as in months in the hospital in isolation).  Please remember to pray for her when you pray for Reid.  Lift up her mother as well.  She has 4 year old twins here in Prairieville that she is missing like crazy.  Her mom is the bone marrow donor for this transplant.  Please pray that this transplant is successful and that Bree will be healed from AML thanks to her mother's "fighting mad" bone marrow! Bree has the best spirit for someone who has gone through all that she has.  She always has a smile on her face.  AND she loves Reid:)


Mary Pat said...

Thanks for the update. I am keeping all of you in my prayers.

B.R.M said...