Caught a bug

July 25th Update:

Isaac has his first fever since we removed his port back in March. Although I hate to see him sick it was oddly refreshing knowing that we didn't have to rush to the emergency room. This was the first time in 2 years that I got to deal with my child's sickness "normally". We assume that he got a little bug from his week at Vacation Bible School.  He absolutely loved his time there and I'm so glad he got to go learn about God and interact with kids his own age. But since I stay home with him daily his little immune system just wasn't ready for all those germs. Lol

So he had it's fever Friday evening until Sunday morning. So we watched a whole lot of Netflix this weekend. Then Monday and Tuesday he has no fever but has been pretty boogery/snotty. But I'll take it. I'm so thankful that we've been given these "restful" few months and I'm praying that continue. 

Next MRI is next week. We continue to pray for stable results and that the pesky little cyst disappers completely.  How amazing would that be if we didn't have to worry about another possible surgery or further treatment. Praying Praying.

Next MRI Scheduled

July 9th Update:

Isaac has his next MRI scheduled for Friday, Aug 4th in Iowa City. This comes just 6 short weeks after his last one. He is doing well currently and is not showing any negative symptoms. However we do have a couple appointments this week for him. They wanted him to go see an eye doctor because of the positioning and placement of the cyst could cause double vision or similar problems. We don't think he has any problems currently but it's kind if hard to know what a 3 year old is seeing. Next, we are going back to Blanks Hospital in Des Moines to have a neurological exam done. This is half way between his last MRI and next one. 

We are still praying like crazy that his tumor remains stable and that the cyst shrinks. We serve a great and mighty God who can do miracles. #HeIsHealer #ToughAsNails

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!