MRI - Nov 12th

Results:

MRI Results:

Overall Isaac's MRI results are good.  His tumor is stable, which is great! There is one area that we need to investigate further as there was some changes/slight growth. It may be a cyst or it may be post treatment changes, TBD still.  With that said we have to go back for another MRI in another 4 months to make sure this area hasn't grown any more due to the vital location.

But like I said overall we are very thankful. Thanks for praying. 

Isaac's oncologist was happy with results as well but thought it best if one of the neuro surgeons at Iowa also reviewed Isaac's MRI scans (because of the pain he was feeling in his neck was still not explained).  So on Wednesday I got a call from the U asking us to come back the following day for a CT scan and Xrays. So back to Iowa we went on Thursday. Side note, we are so blessed to now live closer to Iowa City, it made the last minute trip a lot easier. My mom was able to meet us there to help with the girls while Isaac had the appointments (it takes a village, and we ate so grateful for our families to always step in and help). After his 2 tests we met with a neuro surgeon who reviewed everything with us. Nick and I were thinking this meeting would last only a few minutes but we probably spent close to an hour with this guy and learned a lot. 

Long story short, we discovered that Isaac has 2 vertebrae that have been fused together. Also when Isaac had that brain surgery (~5yrs ago) they had to remove 1 and 1/2 vertebrae and remove a portion of the skull bone (just as a point of entrance to do the surgery). Anyways, the combination of this along with the location of his tumor (being not only on the brain stem but also in the spinal cord) makes it more dangerous for Isaac to get seriously injured in this area. So the doctor told us we needed to restrict Isaac from a number of sports and activities. Examples are no wrestling, no football, no trampolines, no rollercoasters, no cartwheels, and no ninja class. 

This was pretty hard news to break to Isaac. He had to quit his ninja warrior class that he's been doing for the past 7ish months (and absolutely loves). We told him he can no longer do trampolines. This was also pretty upsetting as we have one in our backyard. We have yet to explain all the ramifications.  His little heart could only take so much. There were a lot of tears that night. But we know Isaac will find new passions and we just need to explore different types of sports and activities. We are thankful that we discovered this before something happened. 

Because of Isaac's unique situation the doctor wanted Isaac to come back every 6 months for Xrays. 

Nov 12 Update

Isaac is scheduled for another MRI on Tuesday, Nov 12th. Orginally he wasn't due for one until January; however, we are proactively moving it up 2 months as Isaac had been complaining of neck pain the past few weeks.  After mentioning it to Isaac's oncologist at Iowa she thought it's best if we get it checked out sooner than later. Nick and I agreed so here we are. 

With Isaac's tumor located on the brain stem/spinal cord we have to be hypersensitive to any new aches and pains in this region. We are desperately hoping and praying that it's nothing but regardless we know that God is good and we are trusting Him in this. As always appreciate your prayers. 

This picture was taken a week ago when we visited the St Louis Zoo. Isaac was enjoying a fancy Hot Chocolate 😊

MRI

July 16th Update:

Prayers for this big boy! Mr. Isaac has his next MRI schedule for Wednesday, July 17th. Check-in is bright and early at 6:30 am with the procedure at 7:30. Then we will have 2 other medical appointments later in the day. 

Isaac is now 5 and 3/4 (as he likes to add). He is loving summer and is staying busy with swimming lessons, baseball, and ninja class.

It's been 6 months since his last MRI.  This is the first time we've gone this long between MRIs. We are hopeful that this one will go smoothly. Unfortunately Nick had to be out of town for work so Mima and Papa will meet me in Iowa City for the appointments and to help with the 2 girls. So appreciate that. Not sure I'd manage very well tomorrow without their help. 😉 

Rescheduled MRI

Jan 1 Update:

Iowa City here we come! Isaac's rescheduled MRI is tomorrow morning (Jan 2) bright and early! Check in is at 6:30am w/ a scan at 7:30. Then we'll meet with an oncologist in the early afternoon. Praying for clear scans! Appreciate everyone who joins us in praying for this tough little boy!!
#ToughAsNails

Jan 2nd Update:

Preliminary MRI results are good! Tumor is stable and Isaac did fabulous!!
The Herky Hospital still had a few trees up and naturally Isaac loved the superhero one! 🤩
Thanks Mima and Papa for tagging along and helping with Jemma so we could focus on Isaac. ❤
#ToughAsNails  #SuperheroStatus

Next MRI - Dec 5th

Dec 5th MRI:

We will be heading back to Iowa City on Wednesday morning (Dec 5th) for Isaac's next MRI. The scan is scheduled for 10:30 and we'll meet with his oncologist that afternoon for preliminary results.
It's been about 4 and 1/2 months since his last one. We are hopeful this one will go smooth and yield favorable results.  

#ToughAsNails 

Isaac on Thanksgiving morning 

Update:
Isaac got sick the night before so we had to reschedule his MRI. Being sedated while fighting an illness (particularly respiratory related) is not advised. Thus, its better be safe than sorry. It will be rescheulded for 4-6 weeks.

Isaac's big news

Oct 5th Update:

Isaac continues to do well. He is loving going to afternoon preschool, learning so much at Awanas on Wednesday nights, just finished up soccer and will be starting a little ninja class later in October. He is not experiencing any negative symptoms. His next MRI is scheduled for Dec 5th. This will be the longest weve ever gone between scans. 

On a different note, wanted to share that Isaac is going to be a BIG brother a second time! Isaac is really wanting a brother. He says he will still love a sissy but he'd love a brother even more. 😆 

MRI - July 20th

MRI Preliminary Results

Isaac's tumor is STABLE and the cyst appears to be almost GONE!! Boo Ya
Thanking God for this positive checkup! Doctors are extending the length between MRI's. Next one will be in Dec (5 months away). 

Overall Isaac did great! The sedation process was the best he's ever done. It was through a gas mask and Isaac "flew a jet plane". Haha  

Once again Mima and Papa accompanied us and took over Jemma duty which helped us a ton! 

Thanks everyone for your thoughts and prayers for Isaac! 

July 20th Update

Isaac is all set for his next MRI check up. It'll be Friday (20th) and it starts at 10:40. We'll be traveling to Iowa City in the early morning.
It's hard to believe it's already been 4 months since his last scan.  As always we would appreciate you praying for our little boy. 
Isaac is currently loving summer! He gets together with his friends often,  just had his last T Ball game tonight and for this past week has been enjoying having his mima here. 

#ToughAsNails #MRI14
#HereWeGoAgain

MRI - March 16th

March 16th Update:


Isaac's MRI today went great.  Preliminary reports suggested that his tumor is stable and the cystic portion actually shrunk slightly in size!! 

Isaac woke up in good spirits, and was a trooper during travel and while at the hospital.  He was surprised by his mima and papa after being checked in.  Of course he was happy to get to spend time with them.  

We were hoping for a very cooperative kiddo today.  We've been practicing the gas mask/sedation part at home. He even got to decorate his gas mask wth stickers which was a lot of fun for him.   We almost had it but when the sedation process started and the gas started flowing he was like "nope, I don't want this... I'm going back home now." Lol...So we did the old 3 person holding him down while keeping the gas mask on his face trick. Not necessarily enjoyable but it was probably the best sedation he's ever had so we are moving in the right direction.  

March 14th Update:

Isaac has his next MRI scheduled for this coming Friday (the 16th) in Iowa City.  The scan doesn't begin till 9:50 so we'll probably leave Des Moines that morning instead of staying the night the day before.  It'll be an early morning  with check in time at 8:20 + a 2 hour drive but hoping the kids will sleep in the car.  Here's to wishful thinking ;-)  

This will be the very first time we've stretched his MRI's to 4 months apart.  In the past we've always had them every 3 months (and in some cases even shorter periods). 

We are feeling pretty good about this scan but it's always a little nerve wrecking when it's MRI week.  We get so use to living a "normal"  life that sometimes we forget we have a child with a very serious medical issue that could change our lives' directions at any time.  It's such an enjoyment to be able to watch Isaac live life like other kids his age.  We are hoping and praying that he will continue to do just that.  

We'd appreciate your prayers that Isaac's tumor is stable and that the cyst (that gave us a scare a few months ago) goes away or stays at bay.  Isaac isn't showing any negative symptoms currently but as we've found out the hard way before sometimes things are growing internally without showing outward signs.  Praying that is not the care this time.  We are so thankful for you all that continue to show love and support to our favorite little guy.  

Isaac continues to do well.  His current favorite things are: 
1) Pre School
2) Racecars
3) Running really fast
4) Lightning McQueen and Jackson Storm (from Cars 3)
5) His sister, Jemma
6) and of course Mom and Dad

This picture was taken a few weeks ago when we visited the Botanical Center in Des Moines.  Isaac loved it!