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”

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! 

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Continuing good news!

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.  

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“Good news just keeps getting better”

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!”

“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.D50B9A89-7569-41A1-A99A-EA7737B28224.jpeg

Gracyn’s Journey

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:

Neuroblastoma is a cancer often found in the small glands on top of the kidneys (adrenal glands). It can develop in the belly, chest, neck, pelvis, and bones. Children ages five or younger are most commonly affected.
Symptoms may include fatigue, loss of appetite, and fever. There may be a lump or compression of tissues in the affected area.
Neuroblastoma may require surgery and chemotherapy.

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.