I posted about Love and Hope last week, and this week is about the third, Faith.

Definition of Faith:

1.)   Complete trust or confidence in someone or something

2.)   Strong belief in God or the doctrines of a religion, based on spiritual apprehension rather than proof

Proverbs 3:5-6 “Trust in the Lord with all your heart; do not depend on your own understanding. Seek his will in all you do, & he will show you which path to take.”

Last week Gracyn went in for the MIBG scan, MRI, and PET scan.

And here we are with “results”:

MIBG- detecting Neuroblastoma, shows that within a short amount of time (6 weeks) this mass has shank even more, which is GREAT NEWS! It is preforming how it should and we could not be any more excited about that!

The MRI is done each time she has a scan to see if there is any other spots of concern. 6 weeks ago, there were areas in her pelvic bone and spine that were concerning. They decided to do the PET scan to make sure this was not cancer. The great news is that the PET scan confirmed that in fact these areas are not cancerous. However the MRI showed that they are still there.

The news that we got back today was that the medical staff is stumped. They really cannot determine what these areas are. It does not add up to be tumor related. The interventional radiology team does not feel that they are big enough to take a sample, so that is ruled out at this point.

The next step is to do a plain X-Ray to rule out disease and get a good picture with a small amount of radiation. We will be doing this next week and she does not have to be sedated, which is good! 🙂

In 6 weeks we will be going back for an MRI. They will read the scans while she is still sedated and if they feel it necessary they will do a CT.

I feel like this is a whirlwind of an answer as it doesn’t really give us a true “answer”, however hearing that they are 95% sure it is not cancer was a huge prayer answered. We are not 100% out of the woods but the power of prayer is amazing.

I trust the word of these Doctors and have Faith that they are doing everything in their power and might to make her well, to take all the evil away. It is hard as her parents, as her family, to not have an answer that is definitive, but we will!

I repeat this over and over the best part this has helped to shape so much of her personality and she has become the most amazingly brave, strong willed, beautiful human being I could ever ask for!!

 

Day 2 of 2- “Love”

As we sit and wait “patiently” (because I am the least patient person in the universe) for our little princess I am reflecting on how lucky I am to have LOVE in my life, and why not on this “Day of Love” 😉

The exact definition of love:  an intense feeling of deep affection.

The picture below sincerely shows how much this man loves this little girl! It melts my heart every day watching the loves of my life together, interacting.  It is something that can not be described.  (He doesn’t care if they watch baby shark 100 million times, whatever makes her happy.)   ***I feel so lucky and so blessed for this***

I also feel so lucky to have the love of friends and family! All of the kind words, messages, and texts have sure made this process a little easier and I feel the love. ❤

1 John 4:16 And so we know and rely on the love God has for us. God is love. Whoever lives in love lives in God, and God in them.

Here we are again, day 1 of 2.

Today Gracyn will have her injection for her MIBG scan.  (This is the most painful part as her momma, oh the tears!) Tomorrow she will have an MRI, MIBG, and a PET scan.

It is our hope and prayer that the PET scan shows no cancer in her pelvis and T1 and that although the last scans were only 6 weeks ago that the Neuroblastoma is even smaller yet!  🙏🏼

Romans 15:13 – May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.

Isaiah 41:10

“Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand”

I want to apologize for not posting sooner as I know there are many that have been praying and wondering what is going on.  

I wish I could say that this is a simple post, and easy to compose, but it’s not so simple, hence the length of time it has taken to post.

Last week Gracyn had her injection for the MIBG scan (detects Neuroblastoma) on Thursday. It was a rough day as Gracyn is old enough now to know pain.  They put in an IV and then inject the dye through the IV.  She cried so hard through both processes that she broke capillaries in her little cheeks! 😦  But of course she is one tough cookie and was a trooper through all the poking and prodding before and after.

Friday she was scheduled for 11am tests and by that time they were behind by two hours!  But thank goodness for the nursery full of toys that kept her mind off of the fact that she was tired and had not eaten since 7pm on Thursday!!! 

It was a really long day for all of us and we were finally able to leave around 4:30. 

Good news first:

The MIBG scan is showing that the Neuroblastoma is shrinking.  The MR shows definitive sizes and compared to the last tests in August, it is also consistent with the MIBG and is showing it is getting smaller and becoming more mature (less malignant).  There is a third test which tests her urine, specifically something called catecholamines, and that is also consistent with the other two tests that yes it is shrinking. 

The not so good:

The MR results are showing other areas of suspicion in her pelvis and her spine.  These areas are not lighting up on the MIBG scan which means it’s possible that it is a different cancer.  There are a lot of unknowns right now.  We are not 100% positive of the next step.  Her doctors are very optimistic.  They are always saying Gracyn is a “rare case”.  They think it is strange she is showing no signs or symptoms and in fact is thriving wonderfully!!! They also find it peculiar this would be a whole different form of cancer, non related.  

We will hopefully have more answers soon.  The plan is to go in for more tests in 6 weeks, but they said it could be possible after the board of doctors meet that they would like her to get scheduled as soon as next week.  

This has not been an easy week.  We feel so blessed to have this beautiful, smart, fun, loving, crazy as ever child.  It is hard to fathom why there is evil in this innocent little human.  We always ask why, and God – he knows, we do not.  But we have to trust in him that all will be well! 

So to my prayer warriors- I need you! 

Continuing great news!! 

Thursday Gracyn underwent her 6 week Ultrasound checkup.  This is the first time she didn’t have to have an MRI in conjunction with the ultrasound.  They felt this would be a pretty good indicator of what the mass is doing.

After meeting with her oncologist they determined that it has again very minimally shrunk. (But hey to us smaller is smaller!!!!) The comparison between the prior ultrasound and this was less of a change in diameter but they feel that the “weight” of the mass is less.  In 12 weeks they would like to do another MRI and an MIBG.  (This is the scan that detects Neuroblastoma) 

They are hoping that the MIBG scan will show that possibly the mass is no longer Neuroblastoma, but maybe has calcified.  

The link below explains Neuroblastoma very well and the process that we are going through. 

https://www.mottchildren.org/conditions-treatments/ped-cancer/conditions/neuroblastoma

The MIBG scan is nothing to Gracyn, but is hard on us as she will have to go in one day to have an injection and back the following morning for the test.  It is very taxing, but she loves seeing all the people and “talking” to them, so it is right up her alley.  

The good news just keeps getting better! We are so blessed!

We found out late this week that the biopsy results we have been waiting for confirmed that the DNA make up of the mass is consistent with most Neuroblastomas that go away on their own or calcify! Which we have been waiting for this for quite sometime!

She is not out of the woods yet.  Gracyn will have to keep going in for test, but the good news is right now she only has to have Ultrasounds, unless the next one shows growth for some reason, then we will also do an MRI.  She will go back for the next Ultrasound September 27th and as long as it looks good, we will go every 12 weeks vs every 6 weeks!!! 🙌🏼

Gracyn continues to be non symptomatic and is doing new things daily like singing, dancing whenever she gets a chance, and becoming more and more a very independent woman! (Not sure who she gets that from 😂)

 

“When you are little and sassy you can make anything happen”

We received great news late in the evening yesterday!!! News that makes me want to sing joy to the mountain tops!!! 

All test results are showing that Gracyn’s mass has slightly reduced in size since June!!!!!  

Although we understand she still has a long road ahead of her, this makes us very happy!! 

We are still waiting for a couple more tests results, but they are pretty confident they will be consistent with what the MRI and Ultrasound are showing.  

Thank you so much to everyone for the outpouring thoughts and prayers.  We are so overwhelmed by the love and support we have been receiving! 

Psalms 107: 8-9

8 Let them give thanks to the LORD for his unfailing love and his wonderful deeds for mankind, 9 for he satisfies the thirsty and fills the hungry with good things.

Our little Gracyn Mae is such a joy to our lives!  She has shown us how such a small human can be so strong and brave! For those of you who don’t know, I will share with you the crazy whirlwind of a summer we have had.  I will use this blog to update of her progress.

 

Back in May Gracyn was sick for 6 days.  She had a fever of 103 and was not herself.  At first the Doctor’s thought she had a virus but when it did not subside after 6 days, they did some further tests and discovered she had a UTI.  Once she was on antibiotics, she was better.  We were very relieved as she is such a happy baby and to see her like this was so heartbreaking.  It was recommended that she have some further tests done on the urine culture as it is not common for a child this young to have a UTI.

The culture showed that there was some bacteria growth and the Doctor decided we should go for an ultrasound just to make sure everything was going OK with her Kidney function.

Early June Gracyn was undergoing an Ultrasound when the tech noticed something that made her investigate a little further.  (unrelated to the Kidneys).  After several times going out and coming back in saying that the Doctor wanted a little more imaging, she finally let us know that they had discovered a mass.  We were in total shock as that was not the reason we were there and had no idea what this meant.

They quickly brought in the oncology department and started talking Cancer.  This was very scary as there was no way our little baby had something of such nature!  They did a wonderful job of describing where it was (near her Kidneys), how big it was
(about an inch), and what it could be (most likely Neuroblastoma), as well as what the next process would be.

This led to several tests including blood work, an MRI, and an MIBG scan which would all confirm Neuroblastoma.  These tests would also show if it had spread to any other part of her body.

Within a week we heard the news that yes in fact our little Gracyn Mae had Neuroblastoma:

This came with good news and bad- the bad news is of course that icky word Cancer.  The good news however was that the mass is only an inch and that Neuroblastoma can actually “go away” on it’s own!  We were very lucky that we found it when we did as the older the child, the grimmer the diagnosis and prognosis.  She was enrolled in a couple studies that would monitor her progress every 6 weeks with an Ultrasound and MRI.

Shortly after being diagnosed and enrolling her in these studies we found out from our great Oncology staff at MOTT hospital that this crazy mass was wrapped around her renal artery and she would need to have biopsies of this mass to determine the next step; chemotherapy, surgery, or surgery and chemotherapy.  (This was probably the scariest point for us as parents so far as of course we want it gone, but the long term effect of chemo can be life changing)

Mid July Gracyn had the biopsies of the mass as well as bone marrow to confirm it had not spread to her bones.  We waited what felt like forever (only a week) to find out that the DNA was one that has a good chance to go away.  The long term effect of chemo or surgery has greater risks than continuing to be monitored every 6 weeks.  Which we were very happy about!

Today 8/20 Gracyn has her first MRI and Ultrasound that will determine what it has done since the last tests (grown/spread, stayed the same, or our hope- shrunk)

The most greatful thing is that throughout this whole process, which has brought us peace, is that she has been non-symptomatic! Developmentally she has been above and beyond what we could imagine! She started walking in June, 2 months prior to her first birthday, she clearly says momma, dadda, and papa and babbles Aiden and Zac (her cousins)

All we can ask for at this point is prayers! Prayers that she continues to receive good news and God guides those who are caring for her.  We are beyond blessed!

Psalm 9:10. Have faith in the LORD your Godand you will be upheld; have faith in his prophets and you will be successful.