MRI Results

June 26th Update:

Well it's been kind of a roller coaster of a week.  Not going to lie my patience has been tested but my faith in God strengthened. 

After 1 whole week of waiting on results which would determine whether Isaac would be needing a second brain surgery we finally heard back from Boston around 5pm. The Boston neurosurgeon doesn't think he needs surgery right away! (Phew) She instead agreed with the wait and see approach.  With that said she doesn't want to wait the normal 3 months to get another MRI due to the rapid growth Isaac's cyst has had. So we'll rescan him at the beginning of August and hope for no additional growth.  This is the plan as long as he remains 100%symptom free... hurray!!! God is good. 


So looks like we'll get a "normal" Summer after all.  Yay! We've been so enjoying our new freedom with having no port and not having to worry about germs, sickness, chemo, etc so the thought of that being taken away was so frightening! So for the time being we'll sit back and try to enjoy as much summer as possible. 

We are now aware of the possible symptoms that he might start showing if the cyst is growing. We will be watching him like a hawk to make sure he doesn't become  symptomatic. We are under strict orders to call the hospital or go to the emergency room right away if we notice any symptoms. Eek! So that part is a bit unnerving but that's just going to have to be a part of our life now. 

So if you could pray over the next few weeks that the cyst decreases in size we'd so appreciate it! 

This picture is from this past weekend. We went to a local town festival. Isaac got to ride a pony and he absolutely LOVED it!

June 20th Update:
Wanted to write a quick update on Isaac's MRI as a number of people have been asking.  Unfortunately the initial results from the University of Iowa were a little bit disappointing. We found out that he has a cyst on his brain tumor that has grown over the past 6 months somewhat significantly. It's in a dangerous spot and is pushing on some vital areas in the brain. Our University of Iowa oncologist said that we might be facing another brain surgery to either remove or drain the cyst, not sure which one it would be because of the dangerous location. Our other option is to wait 4-6 weeks and then get another MRI to make sure nothing is growing (instead of his normal 3 month check up). There was also discussion about starting on another Chemo again. 😢

We obviously want a second opinion so the MRI images were overnighted to Boston Children's Hospital on Monday and we've been waiting to hear back from Boston ever since. (Boston is where Isaac had his first brain surgery.) It's very daunting to sit here and wait not knowing what will come. We keep praying to God and asking him for Peace during this. We are very hopeful that we will hear something on Friday. Luckily he is showing no negative symptoms and continues to be his vibrant, upbeat self. 

Will keep you posted once we hear more. 

MRI Day

June 19th Update:

Isaac has his 3 month check up this morning. On the agenda is another MRI and a meeting with his U of I oncologist. Praying for favorable results.

This is his first MRI since getting his port removed so sedating him will be a bit different. Instead of accessing his port we put numbing cream of 4 separate areas of his arms and will hopefully get an IV in successfully on the first time.  He has been so use to them messing with his port that the will be a very different experience but hoping for the best.

Port Removal Surgery

April 10th Update:

Today Isaac had his port removed after having it for almost 2 whole years!  We did the surgery at Blanks Children's in Des Moines.  This made it way more convenient, although we missed some of the perks of being at Iowa. 

Isaac first got his port accessed by his favorite nurse, Morgan.  Although it seems kind of strange to access his port when the goal of surgery was to remove it, it just made it more "normal" for him.  Then after he fell asleep they would de-access him and start another IV for the actual surgery.  Well apparently everyone does things a bit different.  We are use to being at Iowa where Isaac would fall asleep nice and slow over a few minutes, he would talk to us, become a bit loopy and then eventually just fall asleep.  This time however, they gave him the medicine and he just went limp in about 2 seconds.  His tongue rolled in the back of his mouth and they had to hold his head just right in order to keep him breathing. Nick and I were definitely not expecting this and it gave us quite a scare.   

The procedure took about 45 minutes and everything went well.  Isaac has to take it easy for a few days which has been challenging but overall we are thrilled for him. 

2 Years Ago

April 7th Update:

2 years ago was a devastating day for our family as we were told that our baby boy had a brain tumor.  This was one of the worst days ever... Now, flash forward 2 years and many miracles later and this family has so much to be thankful for...

For starters Isaac's tumor is "stable" and just this week we found out that Isaac gets to have his port removed (or as we call it his "Iron Man Blast" :-)).  His surgery is scheduled for this coming Monday, the 10th.  Yay!  I can't begin to explain how much we've been wanting this day to come.  His port was great for getting chemo treatments and made these appointments more manageable but its the constant worrying about him getting sick and the port infected, and the middle of the night rush to the ER trips that have been "challenging" we'll say.  I am so thankful that Isaac gets to close this chapter of his life and live like a normal little boy.  Of course, I know his life will never be "normal" with constant follow up appointments but we'll take it.  :-)

Isaac has come so far since that awful day in 2015.  He continues to amaze Nick and I each and every day.

MRI Results

Isaac's most recent MRI results showed a "STABLE" tumor!!  Hip Hip Hurray!

MRI

March 22 Update:

Isaac had another MRI today.  We traveled to Iowa for this appointment the night before and stayed in a hotel.  Isaac got to swim and so of course he was pumped!!!  Nick's parents came along to help us with our 3 week old daughter.  :-)

Monthly trip to the hospital

January 24th Update:

I took Isaac back to the hospital this morning for his monthly antibiotics infusion.  Hopefully he'll only need 1 more dose in February and then get to be all done with medicine!

I wasn't sure how'd he react to having to go back to the hospital (as we kind of all thought we'd be done by now), but overall he did amazing.  Sure he fussed at home when I put his numbing cream on his port but once we got to the hospital he was nothing but smiles.  This was of course due to the fact that he got to see ALL of his favorite people there.  His nurse,  Morgan,  was there, and his child life buddy,  Kathy,  was too.  He was just as talkative as ever. He cracks me up at the stuff he tells them all. 

We were there for a few hours and then got to come home in time for nap. 

A lot of you have asked how he's been doing since his last scans earlier this month.  The answer is great! Besides having to go to the hospital for 1 fever, we've successfully kept him away from any other sickness. He's as active as ever and getting ready for this baby sister of his.  She'll be here in 5 weeks! Nick and I are very excited for her to join the family and for Isaac to get promoted to a big brother.  He's gonna nail it! :-)

Next appointment is in 4 weeks for Mr. Isaac.  As always thank you for keeping him and our family in your prayers.  We so appreciate the support.