30% Complete

This past Friday marked 30% completion of Reid's treatment protocol.  The treatment for Rhabdomyosarcoma is 40 weeks.  40 VERY LONG WEEKS! We are on week 13 this week. We will travel to St. Jude on Thursday for 6 weeks.  Reid and I will be there the whole time.  Lance will be travelling back and forth.

Wyatt will be here with my mother in law and my family.  He will be travelling to Corpus Christi for one week to visit his good buddies that moved 2 years ago. He will come to Memphis at some point in July.  His 13th birthday is in July, so I want him with me for his big teenage birthday! I can't believe that I will have a teenager!

Reid will have scans on Friday, June 6.  These scans are part of his protocol that he is on.  Everyone has scans on Week 13 of this protocol.  He is scheduled to start daily radiation on Monday, June 9.  He will have radiation every day for 6 weeks.  We will be living in the Grizzlies House for the first week at least.  I am praying that we get to stay at Grizzlies House the whole stay.  The guy that I made the reservation with told me that we might be there the whole time.  I am praying that is the case and that we do not have to move to Ronald McDonald house.  Because I will be by myself for some of the time, being at the Grizzlies House would be much easier for me.

I have not posted much because there hasn't been much to post.  Thankfully, Reid was able to finish out the school year with his class.  He graduated from Pre-K, and this momma could not be prouder of all that he has learned this year.  He has felt great 90% of the time.  There have been a few days that he has been tired or just not feeling 100%.  But most days he has felt good, and he has played with his friends a lot since school has been out.

Reid on graduation day with his teachers Mrs. Jen and Mrs. Christi
(Mrs. Christi is Reid's 3rd teacher to find out she was expecting "unexpectedly" while Reid was in her class)
LOL!

Reid and his buddy Madden

I dread these coming weeks so much.  I am trying to stay positive and know that this is all part of the process to get to the finish line once again, but that doesn't make it any easier to get it done.  I will miss Wyatt so much.  I pray that he has a great summer despite our being apart.

Please pray for:

1) Clear scans on Friday

2) For his counts to be 750 or above on Friday so that he can get his chemo done.

3) For radiation to begin on time on Monday, June 9 and for no side effects from radiation

4) For safe travels for all of us during this time away and back and forth to Memphis

5) For Wyatt to make it to Corpus Christi with no issues

6) For the time in Memphis to go by quickly

7) For us to be able to stay at the Grizzlies House the whole time

8) Reid has started displaying some neuropathy in his feet which is a side effect of one of the chemos he is on.  He will have some breaks from it in the coming weeks.  Please pray that these breaks from this chemo will undo the effects that we are seeing in his feet.  Please pray that they simply go away and quickly.

9) For our son to be healed of this disgusting disease once and for all at the end of these weeks of treatments.  That he will live to be an old man telling of God's glory to his children and grandchildren.

I saw 2 rainbows last week 2 days in a row.  Rainbows are so beautiful, and they signify God's promise to his children.  I pray that this perfect gift from God, our second son, will exemplify the promise of God.  The promise for good and not for evil.  For a future and a hope.

"For I know the plans I have for you,” says the LORD. “They are plans for good and not for disaster, to give you a future and a hope." Jeremiah 29:11

Update

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:)

The Worst Day 2.0

Way back a long time ago, the eye surgeon who performed Reid's tumor resection told us that if Reid ever had any pain in the area where he eye was removed, that could be an indication of tumor growing again.  Reid's tumor grew REALLY fast, and it was very aggressive.  Several doctors gathered us in a room back in 2012 to tell us that we had one shot to get this cancer.  They told us that the cancer had a 90% cure rate with the surgery, chemo and radiation.

Last Monday, February 10, Reid woke up and told me that his eye hurt.  He was referring to the left eye that was removed, but we still all called it his eye.  These words struck fear into my heart, but just as quickly as he said it, he went right on about his morning playing, getting ready for school and going to school for the day.  He was fine the rest of the day and evening.

Tuesday, February 11, he woke up with the same complaint.  I had jury duty that day, so Lance was in charge of getting him ready and to school.  He went to school and had a great day.  He never complained about it again.

Same thing on Wednesday, February 12 which also happened to be our anniversary.  I was on the jury again, and Lance was in charge of Reid.  When I finally go home at 5:00 on Wednesday night, I could tell that Lance was concerned.  Reid had fallen asleep on the couch and woken up complaining of pain again.  So, I emailed our St. Jude oncologist.  I told him that Reid had been recovering from a very bad cold, but that Lance and I were worried because of what the eye surgeon had told us about pain in that area. He emailed back telling us that he thought it could be sinus issues causing the pain.  Both Dr. Hatley (our oncologist) and Dr. Wilson (our eye surgeon) called Lance that night.  I felt very reassured about it all after that. Our St. Jude oncologist wanted me to take Reid to the pediatrician on Thursday just to get checked out.  Lo and behold, Reid had strep throat.  So, I was glad thinking that it somehow was all intertwined.

The weekend was long.  It seemed like the pain was getting worse, but then on Sunday, Reid had a great afternoon.  He played outside for a long time, and our friends even came over to hang out so that Reid could play with their boys. Monday started off bumpy again, but Reid seemed to perk up again mid afternoon.  We even went to Walmart.

Tuesday I took him back to the pediatrician because he seemed very lethargic and slept a lot of the day. She thought he was dehydrated, and she wanted us to bring him to the ER for fluids.  So we did.

We drove to Memphis yesterday afternoon.  My boy who never shuts up talking did not say 2 words for the whole 6 hour trip.  And he never smiled.  He is the biggest smiler.  So, our concern was growing as was Reid's pain.

Today his MRI started at about 10:00.  Last night Grizzles House was overbooked, so we spent the night in the Crown Plaza hotel which is just around the corner.  After his MRI, we moved our stuff back to the Grizzlies House.  We had a 1:45 appointment with Dr. Wilson, the eye surgeon.  When you are in the cancer world, every single thing means something.  One lady walked by and asked us to move to a bigger room, and I had a feeling something bad was coming.  I saw a lady bug this morning, and I still had a feeling something bad was coming.  I packed extra clothes for this trip.  I usually never pack extra clothes.God has given me this weird "sense" about things.  All week I keep getting glimpses of things that I thought were signs that something good was not coming.  The biggest sign was Reid's pain level.  It was/is very, very bad.  He is on pain killers of the narcotic variety for the pain.

So, they moved us to the bigger room (the same big room as 2012), and Dr. Wilson, Dr. Hatley and a few other people walked in.  That's when you know for sure it's not good news.  Reid's cancer is back.  There really is no other way to put it.  It came back in the same exact spot that it started.  I asked the doctors what about they 90%? They explained how they came up with it, and what it all boils down to is that Reid's cancer is very rare and very aggressive.  All that we know at this point is that he will be having surgery on Monday morning.  Our biggest concern now is to get him out of pain.  So, the surgery will alleviate the pain.  Beyond that, we don't know.  We have a meeting in the morning with the doctors again.  The first round of this fight used all of the big chemos.  Our oncologist is researching options.  

So many of you have asked me how I am able to put this posts on Facebook while we were going through this the first time.  It's because you are all family to us.  You all have prayed for us like crazy.  You all love our son.  And it is easier to write it out once so that everyone has the same information.

We covet your prayers.  We have no idea what the future holds.  We just know that we have to get Reid out of this excruciating pain that he has been in. As we get more information, I will let you know.

Thank you as always for loving us. And especially for loving Reid.

No Mo Chemo-One Year Later

One year ago, the last bit of chemo went into Reid's body.  It was an exciting day, but it was a scary day also.  We did not know what the future held, but we were so happy to be done with the excruciating 7 rounds of inpatient chemo.  Sleeping in a hospital for 3 nights straight every 3 weeks does a lot to tax a body and mind. 

They say, "That which doesn't kill us makes us stronger", and that is very true.  We are stronger in a lot of ways.  But most importantly, we are still alive.  I really thought that I would die at points. But when your child is in need of you to be strong emotionally and physically, you somehow find the strength to put one foot in front of the other.

The last year has been emotional, exciting, and happy.  Our trips to St. Jude have been emotional. (I doubt that will ever change) Reid's new beginnings in school and learning new things have been exciting.  And the day to day life of getting back to normal have been so very happy.

January 2013--Reid finished chemo at Our Lady of the Lake in Baton Rouge

February 2013--Travelled back to St. Jude for first set of post treatment scans and surgery

March 2013--Reid turned 4 years old

April 2013--Celebrated Reid's birthday with a huge birthday celebration at our house

May 2013--Wyatt traveled to St. Jude with us for Reid's 3 month scans

June 2013--Went on a Disney Cruise for Reid's Make a Wish trip

July 2013--Celebrated Wyatt's 12th birthday with friends

August 2013--Traveled to St. Jude for Reid's 6 month scans

This is a chest CT where Reid is awake.  He has an MRI each time as well that lasts for 1 1/2 hours. He is sedated for the MRI.

September 2013--Reid started Pre K at Crosspoint

October 2013--Monsoon Halloween with our friends at the compound

November 2013--Traveled to St. Jude for Reid's 9 month scans; Reid learned to ride a 2 wheel bike while we were at the Ronald McDonald house

December 2013--Traveled to Memphis for the St. Jude marathon; Runnin' for Reid raised $20,000 for St. Jude

On this day one year ago, the verse of the day on the Bible app was the following. "Bless the Lord , O my soul, And forget none of His benefits; Who pardons all your iniquities, Who heals all your diseases; Who redeems your life from the pit, Who crowns you with lovingkindness and compassion; Who satisfies your years with good things, So that your youth is renewed like the eagle." Psalm 103:2 This verse is a promise that I continue to cling to on a daily basis.

We travel to St. Jude one month from today on February 20 for Reid's ONE YEAR post treatment scans.  After that, his schedule will go from every 3 months to every 6 months.  I can't tell you what a DRAMATIC difference that will make in our lives.  We are so thankful! As always, we covet your prayers for our boy.  Please pray LIFE for him! I pray all of the time one simple thing, "Please God, let Reid outlive me!" None of us are guaranteed tomorrow! We should all live with JOY in each and every day knowing that we are not promised another day on this earth! As always, we are so thankful for each and every one of you who has covered Reid in prayer!