MRI - Nov 16th

November 16th Update:

This morning Isaac has his MRI bright and early at the University of Iowa Children's Hospital. We arrived at 6:40am with the procedure starting a little after 8. They recently had some sedation team changes so the process was a little different from what we've experienced in the past. They gave him some nasal medicine which was suppose to relax him and often makes patients very sleepy so that they are distracted for the IV part. Well no big surprise to nick and I but it didn't have the intended effect. He was his vibrant and strong-willed self for the IV part so then they decided to try a gas mask instead as he wasnt going to go out without a fight. Luckily they let me come back with him to try to keep him calm.  I tried to keep it together while he was fighting the gas mask. Gosh after 12 MRI's you'd think it would get better but no, I manage to cry at a number of them. This one just got me because I could hear him from underneath the mask crying and asking them to stop. Ughhh! But we got through it soon enough. 

After the MRI we met with his oncologist who said Isaac's tumor was stable! Preliminary report was good! Of course they need the radiologist to study / read the scans and offer the details but overall we are pleased!! So we go into Thanksgiving week very very thankful! 

We now have 1 year under our belts being off Chemo. Woo who!!

MRI - Nov 8th

November 8th Update:

MRI update: well it was a slightly frustrating day. About an hour after arriving at the hospital we were notified Isaac's MRI had been canceled!!! Evidently the backup generators weren't working and they couldn't do an MRI with anesthesia without them. Err... So we were discharged around 8am. Well we all were hungry so we headed to Panera for breakfast , then headed back to Des Moines and were back before noon. 

Trying to reschedule proved to be quite a challenge.  Originally I was told it was going to take a month and a half to get him in (insert angry mama bear). Let's just say I was less than thrilled about that ... Well long story short they were finally able to move things around enough to get us in next week, Thursday, the 16th (insert mama happy face now). 


Even though the day didn't go as planned on the bright side Isaac was a happy camper to not have to do the MRI today.

November 7th Update:

Well it's that time again. Isaac has his next MRI Wednesday, Nov 8th. I believe this will be his 12th!! (Geez 😮)...The procedure will be at the University of Iowa Children's Hospital. We have to be there at 6:40 in the morning so we came up a day early and are staying overnight in Iowa City. Isaac's Mima (Nick's mom) also came up this evening and will be helping me with the kids tomorrow as Nick unfortunately won't be able to be there . He was already scheduled to be out of town in Atlanta. So I'm so thankful for Mima's extra help!! It would be extremely difficult to manage 2 kids alone while in the hospital.

We are hopeful that Isaac's tumor has remained stable with no cyst growth. 

These past 3 months Isaac has been doing great. He went on his Make A Wish Trip, turned 4 and started pre school. He is loving his "normal" life! 


As always will you join us in praying for our little Hawkeye!

Isaac's Make A Wish Trip

Isaac recently got back from his Make A Wish Trip. It was simply amazing! Isaac had such a good time. He got to meet Captain America at Universal Studios, also got to go to Disney World and he got to go to SeaWorld. He had the most amazing time we feel so blessed that we were able to experience this with Isaac. Make-a-Wish is an amazing organization and we feel very grateful for this positive experience.

Reveal Party: Make A Wish Trip

August 23rd Update:

Only 5 more days!!!! Isaac is then going on his Make A Wish trip to Disney World!!!  

Make A Wish, Iowa had a Reveal Party for him last week where we met up for some "Superman" ice cream and they presented him with "his wish" which was to meet Captain America (@Universal) and go to Disney World. They had big balloons and gave him a number of different superhero capes and masks that he can bring with him. He is a huge superhero fan so this was so fitting for him and his wish. He was so happy!!

Nick and I are so thankful for this amazing organization! How awesome is it that Isaac is being blessed with this amazing, once in a lifetime opportunity for absolutely FREE! Just unbelievable. We are so grateful to be able to share in this with Isaac. We've always thought of this trip and have tried to explain it to Isaac as a reward for all his hard work and bravery that he showed those 2 years of Chemo. I thank God that we are able to go on this trip while he is feeling well and healthy.  He is going to have the time of his life!! And mom and dad are in for some long days in Orlando because it's going to be hard to slow this boy down once he gets there! :-) Wish us luck!

These 2 lovely ladies presented Isaac with his Wish.

Superman ice cream for a super hero little boy!

Balloons!!

All decked out and ready to rumble!

MRI - Aug 4th

Aug 4th Update:


MRI initial report is positive... Isaac's tumor and cyst remain stable! Praise the Lord! 

The morning started on a good note, Isaac slept until 5 minutes till 8 (which is when we had to leave) so the whole not eating breakfast thing wasn't a huge deal. He did ask for food a few times later on but we managed to distract him easily enough. 

Isaac's Mima and Papa met us at the hospital which was a huge help. Isaac was instantly happy when we arrived as he hasn't seen them in a few weeks. Then we got great nurses today  as well which ALWAYS makes such a difference! Isaac wasn't a huge fan of the IV but with the help of child life and one of Isaacs favorite nurses from his Chemo days he got through it with only a few tears. 

He woke up from sedation happy. Then we headed up to his appointment with his oncologist. Unfortunately they were running way behind and we ended up having to wait an extra hour and a half to be seen.  But well worth the wait when his oncologist came in saying everything was stable! Next MRI will be in 3 months unless he shows any negative symptoms. 

So with a good scan this means that Isaac gets to go on his special Make A Wish trip to Disney in 3 weeks to meet Captain America!! And then in 4 weeks he gets to start Pre School for the first time. I can't begin to tell you how blessed this makes us feel! 

Just got home from Iowa City around 6pm and had some celebratory pizza delivered! Yum yum! Nothing beats pizza after a long day at the hospital! And bonus mom doesn't have to cook. :-)

Aug 3rd Update:

We are traveling back to Iowa City for another MRI at the University of Iowa just 6 short weeks after Isaac's last one. His MRI is on Friday the 4th and doesn't start till 11 (with a check in at 10 am). So we plan on leaving from DM in the morning and traveling the 2 hours in the morning. Normally we get the 7am slot and stay overnight in Iowa city the night before but not so lucky this go round. I kind of always dread these mornings because Isaac isn't allowed to eat and with this MRI being so much later we'll most likely be dealing with a fussy and very hungry little boy tomorrow. It's so hard to tell your child he can't eat when he says "Mommy, I'm hungry, can i have some food please?"  But we'll make me most of it.  Nick and I usually keep Isaac up a little later than normal the night before and give him some good old fashion midnight snacks. Let's hope that does the trick this time. Haha

We are praying for good scans tomorrow. As most of you know last scan was not very favorable thus forcing us to do this scan so much sooner than normal. Last time there was a large cyst that grew on top of his tumor. I'm praying that miraculously it just disappears and that the tumor remains stable. 

Last scan they talked about another possible brain surgery. Obviously we are hoping that is not what we'll be discussing again tomorrow. Please pray for peace tomorrow and for Nick and I to cast ALL our cares on Him. Help us to have strength to deal with whatever results may come. We know God is so good and we are trusting in His perfect plan for Isaac's life.

Will you also join us in praying for Isaac as he goes through another MRI. Last one was his first without his port so getting his IV started was pretty traumatic for him. Parents that have had their kids in there hospital know what I'm taking about. Gosh you'd do anything to have them be sticking needless in you instead of your helpless and scared child. It's so hard to keep your child calm when they are kicking and screaming and have a number of nurses holding them down. So here's to hoping this one goes better. 

In other news Isaac has been doing really well. He's had no negative symptoms. PTL

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!

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.  

Fever #8

January 7th Update:

Isaac woke up in the middle of the night with a high fever.  So we woke dad up and packed for the hospital and were out the door in 10 minutes.  20 minutes later we arrived in the ER and the staff went to work getting his port accessed and started fluids.  We are waiting on his lab results and blood cultures right now.  Then we'll start some antibiotics. 

MRI Results

MRI Results:

As you know Isaac had an MRI on Thursday. This was the first MRI since he finished chemotherapy 1 month ago.  We were all excited about the possibility of removing his port as long as the scans were good.  We've never had a "bad" scan since he was first diagnosed so perhaps we just expected this scan to be the exact same.  While we waited for the results (as Isaac was still recovering from the sedation) we even met with the surgeon to discuss removing his port next week. 

Unfortunately, his MRI results weren't what we expected or hoped for. There's a region of his tumor (on the lower end of the brain stem) that showed some differences from his last scan causing some reason for concern.  Thus, the doctors recommended postponing his port surgery and also moving up his next MRI to be in 2 months (instead of the normal 3).  That means that his next MRI will be scheduled mid March, just 2 weeks after I'm scheduled to give birth to our baby daughter.  :-(

As you can imagine this was pretty disheartening news.  We really wanted his port out and now that isn't going to happen and then the timing of his next MRI isn't ideal with a newborn on the way. 

But regardless we are still choosing to believe that God's plan is better than ours, even when we don't get it, even when it doesn't fit our "earthly" timeline, and even when it's not what we wanted.  God still knows what He is doing and we have to trust Him in this. 

So what does this mean for Isaac?... Now because the port stays in we need to continue to be extra careful about germs and sickness (particularly during these winter months) because if Isaac gets even a tiny little 100 degree fever he goes to the hospital.  It also means that he'll have to go back to the local children's hospital a few more times for port flushes and monthly doses of antibiotics.  This part kind of kills us as parents.  We've been explaining to Issac that he is done with chemo and we were counting down the number of port accesses left (thinking that last Thursday would be his very last one).  Well now he'll have to get a few more, and it's just hard to explain that to a 3 year old that wants to be done with all this.  So praying God helps Isaac accept this piece.  Then lastly next scan will determine if we can take the port out at that time or if further treatment options are needed.  I must admit the thought of having to start over again with new treatment makes me sick to my stomach.  So I'm trying not to think of that and trying to focus on God's promises and how much He loves my little boy and wants the best for him. So regardless of what happens in 2 months I know it will be OK.

In all, despite not being the best news in the world we also acknowledge that the news could have been far worse and we are still very thankful to have this fireball of a boy in our lives that will continue to fight the good fight. We are hoping this is just a small hiccup on this journey.

Thanks for your prayers in Thursday.  We so appreciate being lifted up in prayer and we would ask that you continue to keep our sweet boy on your minds and in your prayers the next 2 months. 

Be a blessing.

Nick and Allison

Last chemo

November 23 Update:

Isaac had his very LAST chemo treatment today! It was such a special day.  We've been counting down the days with him the past few weeks and Isaac was very excited. 

The hospital staff made it very memorable.  After his last dose they made a tunnel for Isaac to walk through and sang him a song about him being done with chemo.  Then he got to ring a bell and sign his name on the bell frame.  It was awesome!!

Sorry for the late post.  Didn't realize I had forgotten to blog his last chemo.  Better late then never. 

MRI

January 5th Update

Isaac has another MRI this morning.  We are praying for good scans.

We'll meet with his oncologist at Iowa afterwards to go over the results. 

Then pending a good report we'll meet with a surgeon later today to discuss removing his port.  We are hoping to schedule his surgery in the next 2 weeks.  We are so excited to get his port removed and start living a "normal" life. 

Then it's MRI's every 3 months for the next foreseeable future. 

Praising God for continuing to be with us and our lil boy.