Rejoice in the Lord always. Again I will say, rejoice! Philippians 4:4

“And we know that all things work together for good to those who love God, to those who are the called according to His purpose.”Romans 8:28.

It is a GREAT day! Today we rejoice in the good news that the MRI is showing minimal lesions in the hips.  Although they are not gone, they are very small!

She will repeat scans in 6 months (February).  She will have her port taken out sometime soon (in the next couple of weeks) and this will all be just a memory, part of life’s journey, all part of Gods plan for us!

Although it is not completely over, it is nearly over.  We are so happy with this news and so thankful for all that have been praying! Our support system is more than we could ever imagine!!!!

Right now we are halfway between good and great!

Gracyn had two tests on Thursday: MIBG scan and MR.  We are still waiting to hear back about the MR (we thought we would hear back today)

The MIBG scan is showing no uptake which means there is no Neuroblastoma!!!! 🙌🏼 This is fantastic news.  We are ecstatic but feel like we need the MR results to confirm.

Gracyn’s doctors feel like she can get her port out which is an amazing sign, so this could happen as soon as next week!

We are praising the Lord for the news so far! We can’t wait for the MR results.

We are celebrating by spending some QUALITY family time! We are also excited for the new journey ahead as Rob will now be home at night!! 💕

EVERYTHING HAPPENS FOR A REASON!

PRAY. WAIT. TRUST

This has been our exact journey this past year; pray, wait, trust.

We are casting all of our anxieties to the Lord as we go through what we hope are some of the last set of scans for our sweet and sassy little lady.

Today we sit and wait while she has scans. It is hard to be patient knowing that ultimately tomorrow is the day we have been waiting for for over a year!

We are preparing to hear anything; good news, it has continued to shrink and the chemo got “most of it” or great news- ITS GONE! Obviously we know what we want to hear, however we want to be realistic! 🙂

All the love, texts, messages, and prayers are very appreciated! We can not express enough how grateful we are of the support we have.

We will be taking tomorrow as a family to digest the news, whatever it may be.  We will update everyone on Friday after we have had some time. Please understand if we don’t respond to your messages, we still love you, but need to take this time as a family:)

My prayer to you Lord;

Please Lord, may Gracyn be cured of evil, and may we be blessed with GREAT news.  May you cast out all fear and anxiety of tomorrow’s results.

Amen

“Though she be little, she is fierce!” – William Shakespeare

🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗

HOME!

Gracyn is so excited to be home! Back to her toys, which aren’t quite as exciting but more familiar and Daniel Tiger on TV endlessly!

We can not say thank you enough for all the kind words, prayers, texts, messages, visits, gifts etc!

The past 48 hours has been an interesting journey!  Although it has not been for the best reason, it has been a lot of quality time together; learning, coping, and comforting.

We had to learn about chemo, ports, lines, the care of all of that and the home care.  We are lucky that we are in this for a small amount of time, and it is very minor in comparison to some of the kiddos there.  We are so very impressed with the care we received by the nurses at Mott.  The love they have for the kids is so wonderful to see!

We will be back on July 2nd, but outpatient and done in 1 day! 🙌🏼

Prayer: Thank you Lord for making the ease of this process better than we anticipated! Thank you for guiding the staff for her care and us for patients in times of her being, well a 2 year old to say the least! We pray that she continues to be “Gracyn” and has no side effects of the drug.

Side note: Gracyn was so obsessed (as you can tell by the many pictures) with the cars she cars she rode down the halls I have a feeling that will be in our future purchases as well as a play kitchen hahaha 😂

Philippians 4:13

“I can do all things through Christ which strengtheneth me.”

If you research strength you will find 9 definitions in the Webster dictionary including:

1.) the quality or state of being strong:capacity for exertion or endurance

2.) power to resist force : SOLIDITY, TOUGHNESS

3.) legal, logical, or moral force

Gracyn’s strength has been remarkable! She has been nearly unfazed by much of what is going on. Yesterday was a LONG afternoon/evening/night….but she was a champ!

2:00pm – Port accesses/blood taken/port flush

The hardest part physically- She did so amazing letting them access the port, draw blood, and flush it out. Normally she is trying to pull her IV out when she has it after tests/procedures, she has hardly touched her accesses port (which is similar to the IV) 🙌🏼She even got a new dolly! She was so excited!

First hard step done!

3:30 Clinic apt with Oncologist:

Hardest part emotionally- She was nearly perfect (for a 2 year old) while being checked out! There was little to no fight, which is amazing! There is usually lots of tears!

Second hard step done!

5:00 Hospital Admission

This was the hardest part mentally- but they are so amazing here at Mott that she did SO good! We had to wait A LONG TIME before the chemo was actually administered.  They kept her busy with the playroom toys, cars she can ride in down the hall, and anything she wanted to eat! (Thank goodness she can eat!🙌🏼)

Chemo- At 8:00 she stared to get an anti nausea medication through her port.  Around 9:00pm they gave her the first drug called Carboplatin and it was nearly 11:30pm before she finished the second drug called Etoposide.

She fell asleep around 11:00pm after a tad bit of a fight to sleep. She slept fairly well, waking up here and there (understandably but not abnormal for her either).

Common side effects of these drugs include: nausea/vomiting, loss of appetite, hair loss, low blood counts 1-2 weeks after treatment, abnormal electrolyte levels.

Early morning she did vomit. She doesn’t want to eat much yet this morning however that could also be because she’s afraid to vomit again or just because she is an almost 2 year old and does things on her own time 😉

Today and tomorrow she will have another dose of Etoposide.  We have to learn how to administer a shot starting Friday to help with her white blood cell counts and we will continue that until her counts are back up.  She will get to go home at the end of this week, but we will come back the next two weeks for quick blood draws.

Around July 2nd, she will have the next cycle.

We will keep updating with what we know and any updates on her! So far, so good! The strength God has given her has been absolutely amazing.

Isaiah 43:1; Don’t fear, for I have redeemed you; I have called you by name; you are Mine.”

Psalm 34:4 I sought the LORD, and he answered me; he delivered me from all my fears

Phillippians 4:6-7; Don’t be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.  And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus

1 Peter 5:7; Casting all your anxieties on him, because he cares for you

God commands us not to fear, or worry.  The phrase fear not is used 80 times in the bible, and anxiety is mentioned several times as well.

People have mentioned how strong we have been through this past year.  Yes, although I believe this to be true, having the LORD has helped immensely.

Am I saying we have no fear and no anxiety- NO! In fact now comes the real fears and anxiety. Let’s be real, this is not easy. There are so many unknowns, there are so many what ifs, but what we do know is this; we will be done with this and the end result will be one STRONG, POWERFUL, BRAVE, little girl.

Tomorrow we go in for our standard injection for the MIBG scan.  Friday she will have an MRI, MIBG, and she will have her port put in.  Although we know this is all standard procedure, we don’t know how this looks for her, for our Gracyn, the one that we have watched grow over the past 22 months (happy 22 month birthday!! ;))

Next week, Tuesday, June 11, almost exactly to the day that she was diagnosed, Gracyn will start her first round of Chemotherapy.  She will undergo 3 consecutive days of 3 drugs for the first round.  There will be 3 weeks in between and then she will have the next (and hopefully last) round of Chemotherapy.

The Doctors say that Children are often so resilient. She could want to play and act like nothing is wrong, or she could be ill.  We will have to learn a lot including how to give an injection if she becomes ill, how the port works, and what signs or symptoms for hearing loss.  She could lose her hair, she also could not 🙂 She most likely will not be able to be around a lot of germs as her immune system will be compromised.  She loves people and she loves being out and about, so this is going to be a challenge for all of us!

This time is difficult, but all in all we know this is the best thing for her.  In just a few short weeks it is our hope that we will be praising that this is the end, this time is behind us!  No more fears, no more anxiety, a clear path ahead!

To all those that ask what can I do?       This is what you can do:

You can pray for the fears and anxieties to be diminished

You can pray for everything that has happened in the past year, that this has made her stronger!

You can pray this shapes her life

You can pray that she has no side effects including hearing loss, illness, and hair loss (which I personally am struggling with)

🎗 STRONG, POWERFUL, AND BRAVE 🎗

“Everything happens for a reason”, a saying that is very deep for such few words.

I have always believed in this quote, and told others that we may not know the direct reason WHY stuff happens at the time it occurs.  Sometimes we learn why throughout life, and sometimes only God knows!

There is a great article if you have time to read that puts this into perspective:

“5 Reasons Why Everything Happens For A Reason In Life” by Robert Kanaat

https://www.wanderlustworker.com/5-reasons-why-everything-happens-for-a-reason-in-life/amp/

There are so many things that have happened throughout this process with Gracyn that has made us step back and think wow if that wouldn’t have happened than that wouldn’t have happened:

• If in the beginning she would not have had a UTI, we would not have discovered this at all! (Maybe until it was too late)
• If her primary care physician had not ordered additional testing, we would not have discovered this at all!
• If we had done chemo therapy in the beginning, with her having been only 10 months old, it’s hard to say what effect it would have had on her at the time.
• If they would not have persisted with tests of these additional spots, and gotten a special tool to do a biopsy of them, we could have proceeded with watching the areas and it could have spread even beyond the hip area!

I really could go on and on, but I think I’m clear things do happen for a reason!

Today Gracyn had a biopsy of her original tumor.  The purpose of this biopsy was to see what the biological makeup of the tumor is now in comparison to what it was in the beginning.  This will help to determine the type of chemo she will receive.

They were also supposed to put in her port for chemotherapy, however they decided to forgo this for now.  They will place the port the first day she goes in for chemo.  The reason for this was they felt there could be a slight chance that she could end up having a broviac due to her chest being smaller than a lot of children receiving chemo. It is unlikely, but they didn’t want to take the chance. (A broviac is an external port) https://eapsa.org/parents/conditions/a-e/central-venous-catheters/

All of the decisions made have been based on the fact that we are headed to Florida in 2 weeks! We (parents and the doctors) want her to be able to go, have a fabulous time and have nothing to worry about.  There are a lot of risks with an external port and she definitely would not be able to swim or play in the sand! She also could run the risk of infection and getting ill while we are there.

I am grateful the team has been so wonderful about allowing us to continue with going on our trip and not having us cancel!  They have told us they want her to go, have a blast, be a toddler, and not have anything to worry about!

We will most likely have the results of the biopsy by the end of the week and the thought is to start chemotherapy the week after we get back (May 20).  We don’t have the exact “plans” but the tentative plan is that she will have 2 rounds of low dose (pending these results).  It will likely be outpatient and maybe 3 days the first round and 1 day of three drugs the second round.  They will do what is needed to completely get rid of the Neuroblastoma, even if it requires an additional round.  We can not wait until that day when all the tests are final and we can say we are done with this!!!

(I certainly do not wish time away ever- especially with precious moment with her however, with the exception of our vacation, the next 2 months can be speedy 😉 )

She was pretty loopy coming out of anesthesia today but was a complete spitfire all evening! Full of energy! :))

There has been many ups and many downs in this journey for little Gracyn Mae! One second it seems this has been going on forever and in another it feels like we just heard the news.  This has been a 10 month road that I never dreamed of going down.  No one can explain to you when you find out you are expecting or become a parent what journey or path you will endure, what emotions will come about, and how your life can change so quickly!

Last June we found out about Gracyns Neuroblastoma through such a freak situation; A urinary tract infection that led to tests in which a tumor was found.  Who knew!? Who knew this was a possibility?? But we are so thankful it happened!

Our 10 months has been filled with words that are scary like Cancer, surgery, biopsies, scans, injections.  And we have heard good things like it’s shrinking and the urine counts are going down! All praises of God! But what we heard this week, we had been dreading!

The biopsy that Gracyn had done last week of the unknown areas around the hip showed something that the doctors did not think would be true.  They are showing Neuroblastoma in these areas.  This is very strange to the doctors because all of the tests that she has had had in the last 3 months have been negative for Neuroblastoma in these areas.

Since these areas were not there during the original diagnosis, they have concern of the disease spreading further.  The tumor board talked in depth about Gracyns case and have decided that perhaps they will see if they can biopsy the original tumor (very dangerous because of the location and being wrapped around her renal artery) and the ultimate way to get rid of this is through chemotherapy.

This was a very shocking discovery and turn of events for us, and we have now had several days to wrap our heads around it.

Although not ideal, we are looking at the positive picture.  In the end ultimately the cancer will be gone. We will be looking at less time getting scans to monitor the tumor and being able to spend more quality time with her knowing that the evil is gone! No doubt she will be monitored closely but how lucky are we knowing we will always know what is going on and not have to WORRY about what is going on.

We are no doubt blessed by the outpouring support from friends and family and we appreciate all the love and prayers! We will definitely keep everyone updated on the timeline and any progress!

1 Thessalonians 5:16-18- “Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus.”

Last Thursday Gracyn had an X-ray of her spine and pelvic bone.  Her Doctor explained that before the modern technology of the MIBG and PET Scan and all of these advanced tests, they used to find Neuroblastoma through plain X-ray film.  She wanted to be 100% sure that these spots weren’t Neuroblastoma as sometimes we rely on the advancement of technology and it isn’t as accurate as the “old way”.

We received great news that no sign of Neuroblastoma was found in these areas during the X-ray! HURRAY! 🙌🏼

Although it doesn’t give us an answer of exactly what these areas could be it gives us even more confirmation that they are non tumor related (not cancer).

Her Doctor explained that because the original mass is shrinking, these spots could be the body’s way of fighting off the mass.  These spots are also shrinking from one test to the next. So we are hopeful eventually we will not be seeing these AT ALL- and we will be back to focusing on the Neuroblastoma completely disappearing.

Gracyn will have an MRI on March 26th as a 6 week check up from the last one to check out these spots in the hips and spine again.

Sometimes I sit back and think about how a year ago we knew NOTHING of this.  What if she had never had the UTI and we didn’t have any scans, would we have ever found out? But truthfully it has been a great learning experience for all of us that I would never take back.  It has made me realize as she hits these “terrible twos” I’m thankful for each fit she has.  We have seen some very ill children who are not as healthy and vibrant as Gracyn, who don’t even have the will power, or energy to throw a fit.  It has also helped to work on our patience.  Things don’t always go as planned while we are there for scans and visits, in fact they rarely go as planned.  But it has made me realize it’s OK.  There is more to life than being frustrated at how long something takes.  We are spending precious time together and that is what matters most.