Chemo - Week#2

May 28th Update:

Today Isaac had his second round of chemotherapy.  I was somewhat dreading this appointment because the first week's was pretty rough but much to my surprise the appointment went GREAT!  

Today's appointment began at 9am and we were out of there by 1pm.  Isaac's Grandpa Len and Uncle Ben met us in Iowa City for the appointment.  

I think IZ loved having them around.  They were great in distracting him and keeping him entertained.  Thanks you guys!  Here is a video of IZ dancing during his chemo infusion.  :-)  
DanceVideo

Chemo - Week #1 Update

May 26th Update:

We've been asked by many how Isaac has been recently so thought I would write a quick update on him...  Isaac has been doing quite well since his first chemo infusion last Friday. He hasn't really had any negative side effects.  This is a huge praise!  We are hoping and praying that this will continue to be the case for most of or all of his treatment.  
:-)

We've had a good could of days with him.  Nick was off work this Memorial Day Weekend so we had the chance for lots of family time.  :-)  We went to a BBQ yesterday with lots of friends and IZ was running all around and playing on the playground set.  He had such a good time playing with all the other little kiddos.  ;-)

IZ will have his next Occupational Therapy appointment today and then his next chemo appt will be Thursday.  

Chemotherapy - Week #1

May 22 Update:

Today Isaac had his first chemotherapy treatment at the University of Iowa Hospitals and Clinics.  We arrived a little before noon and left slightly before 5pm.  For any of you that have small children, you've probably guessed that this is nap time so it ended up being a long day due to the whole "no nap"....    :(

Prior to arriving Nick and I didn't really know what to expect.  We first met with the nurse practitioner and Isaac's oncologist and talked about what was going to happen today and then we went over signs and symptoms to look for once we go back home.  It's kind of information overload so luckily they also sent us home with all the information in written form.  :-) 

The whole process was long and pretty drawn out.  It's a lot of sitting around and waiting. The chemotherapy drugs took a while to administer.  In the beginning when they were accessing IZ's port (acts like an IV) we had a child life specialist come in to help distract Isaac.  She brought him plenty of toys.  We started with bubbles (his favorite) and then he took to the choo choo trains but then we hit the jackpot when she whipped out the IPAD.  IZ was in heaven and basically was kept entertained by that the majority of the time.  He loves KIDZ Bop as of late and will listen to "Uptown Funk" over and over and over. 

Isaac was a trooper and did pretty well till the last hour or so.  He was getting pretty grumpy and was really wanting to get home.  The last hour tested our patience as we tried to comfort him but really the only thing that helped was when we actually got to leave.  As soon as we headed out the door he was golden.  ;-)  Go figure.  

Luckily IZ fell asleep right away in the car as Nick and I drove home.  We were all pooped. When we got home we were blessed to have Barb Randall (a family friend) bring us over a delicious meal.  We are so blessed by her selflessness.  She has already brought us dinner 3 times and just does it without asking. And Bonus, she is a fantastic cook so every time it's totally yummy..... What a good feeling it is to know you don't have to worry about whats for dinner after a long hard day like today.  Barb- you are a HUGE blessing in our lives.  Thank you for being so generous and kind to us.  :-)  

Thank you also for those of you who prayed during today's appointment and for those who sent us texts.  :-)  We so appreciate you!

All in all today was kind of rough and much harder than I first anticipated but with that said God has sustained us and we made it through Isaac's first chemotherapy.  

1 down, 59 to go.  Isaac's next chemotherapy appointment will be Thursday, May 28.  

Port Surgery Complete

May 14th Update:

Isaac had his 2nd surgery this morning. This was to place a "port" in his upper chest.  This small titanium device is used to administer chemotherapy safer and more effectively.   

So, we arrived at University of Iowa Hospital at 6:00 in the morning and started pre-op. Then we headed to the operating room.  I went down with him to ease his anxiety because he was going to have to get the gas mask which dispenses the "sleepy" meds. Of course this is always hardest on me as mom... You'd think after seeing IZ get sedated 2 times prior I'd be getting use to it. However I just end up crying every time.  It's just so hard to see my little guy struggle as they put the mask on because I know he is scared but it's better for Isaac if I'm there, so I try to put my brave face on... That's what mom's do i guess ;)  

The surgery began at 7:30 and lasted roughly an hour and a half.  Afterwards the surgeon came and talked with us and told us the procedure went well and as expected.  We had to wait a while longer in the waiting room while Isaac woke up. Then we were brought into the first recovery room.  When we got there Isaac was sleeping. They told us that Isaac woke up prior but he was a little "wild" so they had to give him a medicine that calmed him down and made him a bit sleepy.  So we waited a good while as he rested.  Once Isaac woke up the second time Nick and I were there to keep him calm.  His first word after he woke up this time was "BUBBLES"...  haha.  This kid loves his bubbles.  :) Once he was stable enough I got to hold him for another hour or so.  He ate some crackers and drank some apple juice which were both great signs.  Lastly, we headed to Recovery 2 where he just slept on me while they checked vitals and ensured everything was good.  We then were discharged around 11:30.

Now we are back home and are enjoying his favorite movie "FROZEN".  :-)  He'll most likely be pretty sleepy for the next 24 hours but that just means extra snuggles for this mom and dad.

Thank you all for continuing to pray for our family.  God has been so faithful to us thus far and we are trusting in his GOOD and PERFECT plan for Isaac.

Be a blessing,

Nick and Allison



This is a picture of Jeffrey, Isaac's trusted stuffed giraffe who has gone through both surgeries with Isaac.  It cracked me up to see how the medical staff @ Iowa dressed him up.   :-)

  

May 13th Update

Isaac is having his second surgery tomorrow. He is getting a port put in for when he starts chemotherapy next week. Prayers for the surgeon/the rest of the medical team at the University of Iowa, peace for Nick and I as we wait, and strength for our lil IZ are very much appreciated. Thanks everyone! 

Caring People

May 9th:

This post is very overdue.  But none the less we still wanted to write about it.

Throughout the past month we have been SHOWERED with love and support through so many people.  It amazes us each and everyday how even complete strangers bless us. God has been using many of you to show this support to us.  We are currently in the process of writing thank you's to those who financially supported us but also we know that many people gave anonymously; we will never be able to know who those people were so we can only write this vague thank you and hope that you read this and understand how grateful we are for you generous support. Nick and I will have large medical bills the next few years but with the support we've raised thus far the burden is much less.  

Thank you also to those who have sent encouraging cards in the mail. In addition to encouraging words, we know so many of you continue to pray for Isaac.  This out of everything makes the most impact on us.  We know God answers prayers and we know that God did a miracle when we went to Boston. Thank You, Thank You for praying and we ask that you continue to pray for our lil IZ as he will begin his next chapter with chemo in the next 2 weeks.   

In addition, many others have gone above and beyond to bless us in other practical ways.  We know we missing some people but here are a few shout outs to those who have helped us in other tangible ways:

SCOTT CHANDLER:
- Scott is a professional NFL player who plays for the New England Patriots.  He was kind enough to stop by and meet Isaac while he was training in the area with his new team. Thank you Scott for having a servants heart and making time for complete strangers.  Scott is such a down to earth and humble, Christian man and it was great to get to know him better through conversation.  Thank you also for the shirts you brought for us and the jersey for Isaac.  How cool is it that Isaac got to meet a famous NFL player and he isn't even 2 yet?  Lucky kid!  Here's a pic that we took so that one day Isaac can appreciate it later on in life.  :-)

LEN (Grandpa)
- Thank you for being with us during Isaac's long surgery and for the first few days of recovery.  I know you didn't get to see Isaac at his best but we so appreciate that you were there!  

BENITA AND TOM (Mima and Grandpa)
- Thank you for driving all the way from Texas to spend a few days with us while we were in Boston.  Towards the end of our stay in Boston it was taking a toll on us as parents and it was extremely helpful to have you guys there.  We were able to take a nap one day (best one I ever had).  ;-)  Thank you for driving us to and from our hospital appointments and for helping us have a little fun in Boston despite the reason for us being there.  

GAYLE (Grandma)
- Thank you for taking off a few days of work and coming to Cedar Rapids to be with our family the first week after being back.  You were a big blessing to us during this time.  

TARGET TEAM
- We can't begin to list all the specific people at Target who blessed us.  We had so many of you send cards, and care packages.  Nick's team at 1771 even threw a party for Isaac when he got home from Boston.  It was also so encouraging to receive pictures while in Boston of the different Target teams wearing Isaac's wristbands. 

STACEY BRIGGS & JULIE BURKEN
- Thank you to you both.  Stacey and Julie both were complete strangers to me a month ago but have both reached out to me at different times as they have gone through similar journeys with one of their own children being diagnosed with a brain tumor.  Thank you to both of your ladies for taking the time to talk with me and comforting me in a way many just can't.  Thank you to Ryan Mendoza and Kristin Rowland for introducing me to these  2 wonderful women.  

MEGHAN BILDNER
- Thank you for coming to see us in the hospital.  We hadn't seen you in years but that didn't stop us from enjoying the time we had catching up.  Thanks also for the awesome "Boston STRONG" teddy bear you brought for IZ.  We absolutely love it and it totally captures the essence of Isaac.... STRONG.

CRAIG 
- Thank you for coming to the hospital and bringing Isaac a gift and for bringing Nick and I some healthy food.  Even though the timing of the visit was cut short by a fussy baby please know you were much appreciated.  :-)

KAREN AND JOHN
- Thank you for mowing our big yard and looking after the house.

MATT AND CRYSTAL
- Thank you for taking care of our mail/bills while we were away and for looking after the house.

BARB RANDALL
- Thank you for bringing us food last night.  At the time you were a complete stranger only connected through Nick's aunt.  Now you are a friend and we feel blessed to have met you. You are so thoughtful and we so appreciate your kindness.

Port Surgery

May 8th update:

We met with our new oncology team at the University of Iowa yesterday.  It was a long day full of meetings but never the less it was time well spent.  Isaac will be getting 1 additional surgery on Thursday, the 14th to get a port inserted into his upper chest. This will essentially help when he starts getting chemotherapy which is scheduled to begin May 21st.  The port enables the chemo to more safely be administered each week. Isaac will start going to physical therapy and occupational therapy to correct some of the issues he was having prior to his diagnosis.  This will start the 12th.

Isaac continues to be in high spirits and is making big progress.   :)

How We Found Out

Many of you have asked how we found out that Isaac had a brain tumor.  So to expand on that here is the story:

There were essentially 2 main symptoms that showed up for Isaac:
1) Head tilt
2) Left side weakness

We first started noticing some symptoms sometime around Christmas time (2014). Isaac's torticollis (head tilt) had come back. You see IZ was born with torticollis (this is very common in new borns and no one thought twice about it). He went to physical therapy until he was roughly 5 months old and was then cleared by PT and we didn't notice any other symptoms related to this until the following Christmas time (so for almost a whole year).

Then around February we started noticing some right sided favoritism in Isaac.  He was physically able to use his left hand but we noticed that approximately 9 times out of 10 Isaac would choose to use his right hand over his left.  We just assumed he was right handed.  Shortly after his left arm/hand became kind of "weak". It sort of hung there like it was limp. His walking also changed slightly.  He was a little more uncoordinated and had a slight limp to his gait.  But besides those things he still played and acted like a normal toddler. He was constantly on the go and into everything.

Then in March Isaac was referred to go see a physical therapist again.  The first meeting we just worked on exercises that would help his head tilt.  The second appointment they took a closer look at the left sided weakness.  I was told by an occupational therapist who was pulled into our session that at Isaac's age he should be using his right and left hand equally. She thought that because Isaac was so right hand dominant and for the other reasons above that we should go see his pediatrician for further evaluation.  The very next day I was able to make an appointment with his pediatrician. We explained the symptoms that Isaac was experiencing and told her what the occupational and physical therapist had said.  After an evaluation she suggested we go get an MRI for precautionary reasons.

On April 7th Isaac had an MRI done which showed a brain tumor on his brain stem and spinal cord.

We are sharing this for 2 reasons.  First because many people have asked and secondly so parents can be educated in things to look for in their children that are just a little off.

We hope you never have to experience a situation like ours but we would encourage parents to not let "oddities" go unchecked. We feel very blessed to have caught this when we did.

Thank you for your continued prayers and support!

Be a blessing,
Nick and Allison

Home At Last

April 30th

Today was the last day we were in Boston…phew!  We are so excited to come home but we know Isaac got the best care possible while we were in the New England area.  Our last stop today was to meet with the Cancer/Oncology department and discuss Isaac’s treatment options as we head back to Iowa.

The doctor we met with confirmed that Isaac’s tumor is a low grade tumor; slow growing and can be treated in a number of ways.  After just finishing up reviewing Isaac’s case with the Tumor Board, the doctor recommended chemotherapy as we expected.  The reason why chemo is recommended is due a large success rate of either shrinking the tumor or keeping it from getting larger.  Our doctor made it very clear that STABLE (no tumor growth) was good.  He guestimated that 1/3 of patients that receive the form of chemotherapy Isaac will be getting the tumor stabilizes, 1/3 the tumor shrinks marginally, and 1/3 the tumor shrinks significantly.  In rare cases the tumor may not respond to this form of chemotherapy, but there are other options that could be used if that happens. Overall, we were pleased with how effective this treatment can be and are hoping that Isaac will respond well to it.

In short, the chemotherapy treatment that Isaac will be given will last 60 weeks.  The induction phase, which is 12 weeks long, will be 10 weeks of consecutive treatment (going in once a week) and two weeks off.  After that Isaac will enter the maintenance phase.  The maintenance phase is six weeks long and will have four weeks of chemotherapy with two weeks off.  That is one cycle.  Isaac will need six cycles.  The chemotherapy will involve two drugs, both through an I.V.  They both are considered very low risk forms of chemotherapy that should not affect his long term health much, but the doctor said it was the “Gold Standard” of treatment at this time. 

What’s Next? I am literally writing this entry 20,000 feet in the air (not actually sure on the altitude) as we fly back to the Quad-Cities.  All of Isaac’s chemotherapy will be administered at the University of Iowa.  We are going to know this place pretty well to say the least.  Sometime next week we are going to meet with an Oncology doctor at Iowa and talk through the recommended plan that Boston provided us.  After that meeting, we should have more solidified details on when Isaac will start chemotherapy.

Thank you all for coming on this journey with us to Boston and encouraging us along the way!  We have been so blessed by how well the entire team at Boston Children’s Hospital treated Isaac and even us during our stay there.  They have given us hope for Isaac’s future and encouragement for the days ahead, but God is the one that has been in the details all along.  So thankful He has watched over Isaac and allowed this kid to be so strong and resilient. 

We are glad to be home!