Matthews Cancer Adventure

THE 2 YEAR RESULTS ARE IN

Matthew got another ZERO!
Both his CT yesterday and todays MIBG are clear, no evidence of disease!!

Thank you Lord!!!

And thank you all for your on-going prayers, love and support. It means more than you can imagine!

To celebrate the news, after thanking God, we went to see “Incredibles II”. WOW! A Super Sequel

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(Original message from earlier today)

One Year Ago Today was
OFFICIAL END OF TREATMENT

AND

Two Year Ago Today was
NO EVIDENCE OF DISEASE day and being a ZERO on the MIBG!

Today is a followup MIBG scan and there are still a few more to look forward to in the future. To our experienced but untrained eyes it is all looking great again, thank you Lord!!

Sweet Emma joined us today and it is such a blessing to have her here!

We certainly would appreciate your prayers for great results!

Thanks and may the Lord bless you and keep you!

After heading home and having a late lunch on our side of town the phone rings and it’s Peg who is Matthew’s nurse practitioner and with a big smile in her voice announced that Matthew scan score is another ZERO!

Thanks be to God, Father Son and Holy Spirit for His continued grace and mercy. 

And thanks To all of you who faithfully pray for Matthew.

Well, it has been a little while since the last post but as they say “No news is good news!” But I promised an update so here goes.

THE STUDIOUS ONE

Matthew has been busy starting his second year of study at Texas A&M. As he was winding up his first year he thought long and hard about where his interests lie and has decided to not be an engineer but to persue a Bio Medical Science degree and become a doctor! We couldn’t be more proud and know that he will give it all he has!!

SWEETNESS

Also Matthew and Sweet Emma recently celebrated their 2nd year Anniversary as sweethearts! Are they adorable or what!!! ❤

FOLLOW-UP SCAN DAY

Today is a follow-up scan day so Matthew is resting peacefully in the MIBG scanner. He has been given an amazing ability just chill and sometimes even take a nap during the lengthier scans. We pray and ask that the Lord of Lords will bless Matthew with another ZERO. This afternoon he’ll have a follow-up CT as well.

BUT WAIT THERE’S MORE

Tomorrow will be another busy day. Clinic early for bloodwork and then off to the Clinical Research Center (CRC) for follow-up DFMO testing. DFMO is a trial of an oral (pill) treatment that Matt decided to participate in as sort of an extra insurance to be sure nothing will reoccurring.

After that he’ll have a follow-up EKG to verify that his heart is still as strong and healthy as last time. 

PRAYER AND UPDATE

We appreciate you all very much and would like to ask you to please continue to keep Matthew in your thoughts and prayers! 

We will post updates as we have them to share.

May The Lord bless you and keep you all! 🕆

OFFICIAL END OF TREATMENT WEEK

Today begins 3 days of various tests and scans and marks Matthew ‘s official end of treatment and 1 year of NO EVIDENCE OF DISEASE and being a ZERO on the MIBG! 

While there will be more followup scans in the future, it is such a blessing to be at this point in his Adventure.

Nurse Practitioner Danielle was so excited to see him today and hear all about how college is going and what he has doing with his summer. 

With great lab work results we have headed down for his bone aspiration biopsy. 

If tradition holds we will grab some lunch afterwards and then head home.

We certainly would appreciate your prayers for the next few days for smooth and safe procedures with great results. 

Thanks and may the Lord bless you and keep you!

UPDATE:

The procedure went very well. 

FUN FACT

Matthews anesthetist was a lady doctor who is married to the wonderful doctor who put Matthew’s access port in when we began this Adventure and took it out when he was dine. She is a real sweetheart and her husband just had this ability to relax and say, “This is all going to be ok!” Both Drs Olutoye are amazing GIFTS from God!!!

Matthew wanted some Rising Cane’s chicken fingers on the way home

… and now he’s visiting with sweet Emma!

Thank you Lord for all ypur blessings!🕇

FOLLOW UP SCAN DAY

Today was  a follow up MIBG Scan day and Matthew took it in stride. And he was so trusting that he slept through most of it!

During the scans Mom and I always sit, stand, and pace back and forth as the various parts of the scans are done. We have seen so many now that we would like to think that we are able to ‘read’ them with some confidence … but experts  we are not, so even having watched carefully all the scans and particularly the 3 previous scans that came back great we always eagerly await THE CALL from Dr Foster. 

“ZERO!!!!!”

That was the first word out of Dr Foster’s mouth before mom could ask if she could put her on speaker for a Matthew and I to hear.

She couldn’t contain herself because she knows that we are eager to hear the news and it is clear that it means so much to her also. And Matthew, of course, was smiling from ear to ear at the latest great news. 

Then, after an appropriate amount of time with mom and dad 😉, he got out his phone and the first person he called was sweet Emma! ❤

CUTENESS

Mom is sooooo cute. With an abundance of gratitude to our gracious God she’ll always have a time of ‘happy tears’ and fervently thank God for how awesome He is!!! 🕇

WHAT’S NEXT?

Matthew will continue on the maintenance plan and may take part in a clinical trial for those with “No Evidence Of Disease” once that is done. With his next scans in June Matthew will officially be at “End Of Treatment”.

LASER FOCUSED

He is staying focused at school and is really enjoying his college experience and thankful that he is getting this blessing!

GOD IS GOOD!

We are so thankful for the grace and mercy of God and can’t thank all of you enough for all your prayers and support.

May the Lord bless you and keep you!!! 🕇

Big Smile Day!

Today was Matthew’s first clinic visit back at the Clinical Care Center since being cleared from the Bone Marrow Transplant unit which means he got blood work and a visit with Peg, his CCC Nurse Practitioner. 

Well, Peg says his blood work is very good, which means that numbers are on the rise where needs be, hemoglobin, Platelets, Potassium, etc., and decreasing where needs be too! We can’t be.more thankful to the Lord for how well he is doing!!!

Good numbers mean that the targeted radiation therapy is going to happen soon. This will be an addition measure, in the area of the original tumor, just to be sure that anything left of the 0.02% not removed in surgery is destroyed. Thankfully each of these 10 treatments are very quick and have little to no side effects. 

Matthew and I asked many questions of Peg to see where he stands in terms of just relaxing and enjoying life again and Peg said that “his new old immune system is ready to handle it”, while still being smart and clean, of course.

MORE GOOD NEWS!

It is also possible, after the radiation, that he will get his PORT removed before moving on to the Accutane part of the consolidation process!! 

On the way out, when the elevator door opened, Dr Foster stepped out with a big grin on her face. She is so happy for Matthew and said it time to “Enjoy his Freedom!”

We are so thankful for all your prayers and support. Please keep them lifted up as the consolidation process continues.

And to God be.all the glory!!!

A Great Day!

Today was Matthew’s second visit to the BoneMarrow Transplant clinic since being released from the in-patient unit.

Today was PICC line removal day AND since a PICCture is worth a thousand words …

ALL GONE!!!!!

This means so much and we of course want to give God all the glory!!!

Matthew still will have his PORT in place for a little while longer but having the PICC line removed means that normal life can return. Mom and dad won’t need to flush and HepLock him daily, he can shower without a big patch keeping the area dry and clean, and infection risk just went down in a major way.

He is now being transfered back to Dr Foster and Peg un the Oncology clinic for the remainder of the consolidation process and followup.

His Nurse Practitioner Stacey said that his Stem Cells are quite busy, they are “rockin” to use her term, and his marrow is so well engrafted already that he can even go to church, restaurants, movies and, most importantly, on dates with sweet Emma!

What’s next?

1. Well, there is some targeted radiation coming soon where they will treat certain areas as an added measure to be sure no cells linger. 
2. Then, after that, there will be some Accutane treatments. 
3. And, of course, more MIBG and CT scans are a given, too. But those are easy breezy at this point.

We thank God daily for all your prayers, love and support. We can’t tell you how much all of that means.

And there is still an ongoing need so if you or someone you know would like to help Matthew on this Cancer Adventure in a financial way please go to www.gofundme.com/matthewsadventure.

May the Lord bless you and keep you!

All is good!

Well, at first, 2 days of TPN (IV food) at home was on the menu. After some training I felt confident that I could connect and disconnect the TPN to his PICC line safely. 

We were literally packed and ready for departure. Waiting on a dressing change and instruction on how to proceed outside of this very clean and sterile room.

Then the doctor stopped in and mentioned that if Matthew was willing to stay one more night at the BMT and have labs done again in the morning, after a day off of the TPN, to check his potassium levels offnof the TPN, he could go home first thing in the morning without the need for any home IV food.

In true Matthew form he contemplated it for a short time and then announced that staying made the most sense because it would simplify things.

He then worked on some schoolwork, ate some soup, drank two juices and settled back to await Mom coming down to keep him company until morning.

Matthew will be ready and eager to go home in the morning and all that’s needed is a little patience and a quick visit from the doctor tomorrow to give him the potassium results and the official “You are released … Go Home!”.

Looking Homeward!

As I saw Matthew on the stair stepper Mom had me bring for his long BMT stay all I could think of was, “It looks like he has his eyes focused on home”.

Well … if all things stay on track, the doctors could release him to go home as early as tomorrow between 11am and 1pm!

Today Matthew has been focused on slowly consuming enough calories to prove to the doctors that he won’t need to be sent home with any IV food called TPN.

Mom is on her way with some food so we feel pretty confident that no IV food will be needed.

Every time they mention a Friday departure a huge smile comes onto Matthew’s face, but I imagine the smile tomorrow will be even more huge!

I also suspect that knowing how soon he will get to see sweet Emma has something to do with how happy he is tonight!

We are so thankful to God for His grace and mercy. And we can’t thank you all enough for your prayers and thoughts and support.

The Envelope Please!

Valerie from His Grave Foundation made another visit today. She is such a sweet lady and doing so much for the kids on the Bone Marrow Transplant floor at TX Childrens Hospital. For Matthew she came bearing an envelope! Inside the envelope was an application for a possible scholarship from His Grace. As we head down the post BMT road, and the Adventure continues in a different and better way, Matthew will appreciate this blessing.

As for other news, Matthew is rwmaining fever free and his numbers are holding very nicely. So nicely in fact that they continue to reduce the amount of meds he is on. And so well, in fact, that they are even talking about a possible Friday release! Thank you Lord for these steps in the right direction!!!

He started eating food again yesterday and is continuing the same today. His 18 hours of IV food should be reduced to 12 hours tomorrow. If he gets his oral nutrition level up by Friday he might even get released without needing the IV food at home. If only the hospital food tasted better. He could have some outside food but it would need to be made fresh and get to him quickly. They want all their patients to eat extra careful for a few months after engrafting.

Matthew is currently hard at work catching up on