Heading Back to Iowa

The Dose family will be heading back to Iowa on Thursday, April 30th!  We are so ready to be back home!  It has been a very long couple of weeks for all of us but we know it was time well spent.  

We completely believe God has guided us to Boston to get Isaac's surgery. He has been into the details from Day 1.  We are so happy with how everything turned out in Boston.  The care that Isaac received was top notch! IZ will continue to receive medical treatment at the University of Iowa for the coming year (more on that later). 

Here's a pic from this morning.  We are now Red Sox fans ;)

Discharged from the hospital

Isaac was discharged from the hospital on Sunday,  April 26. We still need to stay in the Boston area till at least the end of the week but we are thrilled to be out of the hospital.  We still go back to the hospital daily for various meetings with doctors and therapists but it's so much better to be able to come and go.  :)

Here's a pic of Isaac as we were leaving.  This little boy was pumped to be free! ! :)

Recovery in the Hospital

Recovery in the Hospital

Isaac is doing very well.  He is making great progress.  Each and every day Nick and I continue be be amazed by how well he is actually doing.  We believe God is doing a little miracle with him.  Here are some highlights from the past few days:

Thursday: If you know Isaac well you know that he LOVES to dance to music.  So, 48 hours after surgery daddy decided to play Isaac some music and to our surprise Isaac started to dance, and I mean really dance!  It was such an amazing sight to see.  This boy is so special!

Friday: Isaac met with Physical Therapy and Occupational Therapy in the morning.  At this time we tried to have Isaac walk for the first time post surgery.  He couldn't really do it.  He was seriously wobbly and very weak.  The Physical Therapist explained that this type of surgery really impacts ones coordination and balance and that walking could takes a couple weeks to a couple months to master again.  A few hours after we had this conversation we took Isaac outside to the hospital garden and once again Isaac defied the odds and started waking without help!  We obviously had to be very careful to ensure he didn't fall.  He was still a bit unbalanced but never the less he was doing it by himself.  This kid is so tough . We believe he is being strengthened by God and its simply amazing to see.  :-)

Saturday: Today IZ is in pretty good spirits.  We attended a Hospital Pizza Party and he devoured some cheese pizza.  :-)

A SMILE

4-22-15

Isaac has been very tired and grumpy since his surgery but at the end of the day Grandpa managed to get a little smile out of him.  So thankful for this boy!

SURGERY

Yesterday (Thursday 4/21/2015) was the big day.  Isaac had his brain surgery.  We all woke up together around 5:00 A.M. EST time and got ready.  We were all tired but ready for the day to come and be over...if that makes any sense.  We took a moment as a family to say a quick prayer and give each other a big hug.  This was going to be a day we will remember for better or worse.  

We took a taxi into Boston Children's hospital and arrived at the hospital and checked into Pre-Op at 6:00 A.M.  We waited a little while and then had a nurse grabbed all of us and started prepping Isaac for surgery.  During that time Isaac got to play with a bunch for toy cars and "Choo-Choo" trains while she asked us parents a bunch of questions.  That lasted for about a hour and then around 7:00 A.M. things started picking up quickly.

We had multiple doctors and nurses come down to meet us and they began explaining how they would be involved with the surgery.  It was like medical speed dating in a sense.  "Hi I'm Doctor so and so...I will be involved doing this in Isaac's surgery."  It kind of went like that for 20-30 minutes.  After all of that Dr. Goumnerova, Isaac's surgeon, came into greet us and basically asked if we were all ready.  Not really...but let's get this done.  It was nice however that she did come by to see us as parents before the surgery started.  It gave us more peace of mind.  

We signed a few consent forms and then at 7:45 A.M. it was time to take Isaac to the operating room.  With Isaac being only 19 months and having a group full of strangers with him, the anesthesiologist allowed mommy to come back until they got Isaac asleep.  It was very hard to leave our little guy but we knew we had to be strong for him.  Allison said (while tearing up) she kept talking to him until he fell asleep.  Obviously this was very hard for us and him, but God does not give us anything we can not handle.  

Allison, my dad, and I migrated out to the waiting rooms where we would get updates from nurses every 90 minutes.  This was so nice for us to know exactly how the surgery was progressing while also providing us with peace of mind.  It was also fantastic to have my dad here during the surgery.  He was great and there for whatever we needed.  The first two updates were rock-solid.  The first incision was at 8:30 A.M. EST and IZ was doing great.  He was stable and tolerating the anesthesia very well.  They had also started to remove some of the tumor tissue at this point.  Great news!

We grabbed a quick lunch and got our third update where they said Isaac was now getting an MRI which essentially checked "the margin" the surgeons had to ensure they were not getting close to any of his vital areas.  The MRI took about 45-60 minutes.  Another update came around 12:45 P.M. and said they were finishing the MRI scan and planning to close up after that.  

At 1:18 P.M. Allison spoke to the surgeon Dr. Goumnerova...of course I was in the bathroom and then had no idea where she went.  Impeccable timing!  According to Allison, she said the surgery had been going just as planned.  The surgeon estimated that they removed about a 1/3 of the tumor.  She also mentioned they had found a cyst which they were able to drain.  A big praise was the tumor kind of shriveled up like a deflated balloon and the surgeon said this was good news because his brain moved downwards close to normal positioning.  

At 3:05 P.M. we got word from the nurse in the waiting room that Isaac's surgery was complete!  He was doing very well and they were taking him up to the intensive care unit.  We were told we needed to wait about 30 more minutes before we got to see our lil peanut!  We could not wait!  

At about 4:00 P.M. we finally got to see Issac.  It had been about 8.5 hours and it was such a relief and joy to see our son.  He recognized us right away when he opened his eyes and immediately said "Mommy" and then followed up with "Wa-wa" (which means water).  Praise God!  Our little boy knew what was going on and it filled our hearts with such joy, bringing us to tears.  

We continued to stay bedside with Isaac and taking turns rocking him in a chair.  Around 8:00 P.M. daddy went back to the Ronald McDonald house and mommy stayed at the hospital to watch Isaac.  Isaac had neuro checks every hour and passed them.  Doctors continued to come in and check on random things leaving Allison and Isaac with next to no sleep.  

Coming into today Isaac has now been moved out of the intensive care unit and into his own room (we were sharing with two other patients).  Right now he is getting some much needed sleep and mommy is going to following closely behind.

We will get Isaac's official lab results back late this week and will be meeting with the oncology doctors early next week to determine the best course of action with Isaac.  We can say with almost 100% certainty that it will be a form of chemotherapy.

We thank God for the amazing progress and work Boston Children's Hospital has already made on Isaac and we are hoping that the next post (in a day or two) will be of our little guy playing!  Keep the prayers coming.  We love you all!

Nick, Allison and Isaac

QUICK UPDATE

April 21, 2015 at 4:05pm

Isaac is out of surgery.  It went as expected.  He's been transferred to the ICU and we got to see him after 8 and 1/2 hours of waiting.  He's sleeping right now but he did wake up at one time to hear him say "mommy" and "wa wa".  What joy and relief!  More information to come but just wanted to share this with everyone who has been on this journey with Isaac.  Isaac is tough as nails!

CHECKING INTO BOSTON

Thursday we shipped out to Boston for our big trip with Isaac.  We got settled into a room in the evening, had pizza and we all got some much needed rest before our pre-operation appointments we had scheduled for the next morning.

Friday we arrived at the Boston Children’s Hospital around 8:30 A.M. and it was a sight to be seen.  There was a ginormous projector that depicted many of Boston’s “hot-spots” and places of interest that many tourists frequent.  There were aquariums everywhere you looked, and there were even stairs that played music as you took steps up and down them...needless to say we had to play on them for 10 minutes each time we used them.  First impressions were excellent; the atmosphere was PERFECT for a children’s hospital.  Here is a picture of Isaac and daddy in the main entrance of the hospital.

Our itinerary had five stops:  Nursing, Anesthesiologist, Admittance (paperwork), Blood Work, and a meeting with our Neurosurgeon. 

The nursing meeting (pre-operation review) was pretty simple.  A nurse practitioner asked Allison and me a bunch of questions about Isaac, our individual and family medical history, and weighed and measured Isaac.  Besides the time Isaac was checked, he colored in his Cars coloring book while Allison and I listened and jotted down notes.  Easy peasy.  

Next we chatted with Anesthesiologist who explained how Isaac will be sedated during the operation and we signed consent forms. 

Then came Admittance.  Signed more paperwork for 10 minutes…that’s that.

After this Daddy needed some caffeine so we headed down to the café to get some coffee before going to the Lab.  When we entered the Lab the nurse asked how Isaac did with getting blood drawn.  Allison told her that he had never had it done before and that he was probably going to have some trouble.  Much to our surprise Isaac was a champ.  He didn’t even flinch when the blood was being drawn.  Our boy is TOUGHER THAN NAILS.  We were so proud.  J

After going to the lab, we had some down time so we hung out in the Family Lounge, colored more and walked the musical stairs again.  Then we grabbed lunch while Isaac used his baby charm on the people sitting next to us…they liked him :)

Finally came the moment we had been waiting for.  We were meeting the Neurosurgeon that was going to perform brain surgery on our precious baby boy.  We had talked to her before on the phone but were excited to meet her in person.  She has been doing this for over 25 years and she portrayed a level of confidence that any parent would want in a surgeon that is going to perform an operation on their child.  We talked more about the surgery and what to expect.  So this is what we know.

Isaac’s surgery is scheduled for Tuesday, April 21^st at 7:30 in the morning.  She thought the procedure would take roughly 4-6 hours.  The intention is to safely remove as much of the tumor as possible by basically “sucking” it out. The surgeon was very clear and adamant that taking the entire tumor out during surgery is not a safe option.  Taking too much or all of it would severely put Isaac at risk for his long term health and development.  Prior to meeting us she took Isaac’s case and reviewed it with a tumor board she is a part of at Harvard University and they agreed on how to operate with Isaac.  After the surgery, Isaac will have a scar about four inches long on the back of his head and down his neck.  The tumor board also agreed that Isaac will need some sort of chemotherapy after his surgery.  What kind of chemotherapy and how long that will be is still to be determined.  Our surgeon and oncologist will provide us with options after the surgery.

One thing is for certain.  The road to recovery will be a long one, but one well worth it if our baby boy is healthy and alive.  We believe that God has brought us to Boston Children’s Hospital and feel confident that this is where He wants us to treat Isaac.  We continually see God working in this circumstance in so many ways it is unbelievable.  God is helping us through this difficult time mentally, physically, emotionally and also financially.  It is crazy to us to see just how much financial support Isaac has raised; we will forever be humbled and grateful for everyone who has contributed to Isaac’s cause.  Financial support will no doubt help us with the large medical bills that will be coming our way in the very near future.  We know God is at work and are excited how He will use this undesirable situation for His good.

Keep praying for our little guy.  

SUPPORT ISAAC

Family and Friends

Many of you have asked if we have a gofundme page setup. YES, recently two of our dear friends, Jeremy Tatman and Bethany Tatman setup a page for Isaac. We first want to say that your prayers are MOST IMPORTANT and THE BEST. If you would like to support Isaac monetarily, we are so very appreciative of that as well.  Bottom line is please be an advocate for Isaac the best way you know how to. We will incur many medical expenses and reach over our out of pocket maximum as well as pay for flights and any other "expenses" we have absolutely no idea about. We love you all and we are thankful for everyone who has been on this ride with Issac, Allison Dose and I.

Isaac's Go Fund Me Page

A PARENT'S PERSPECTIVE: OUR WEEK IN REVIEW

A message from the Doses:

Our little Isaac William Dose (19 months) was diagnosed with a tumor on his brain stem and spinal cord on Tuesday, April 7^th.  This news was the worst we have heard in our entire life and as parents it completely rocked our world.  All sorts of thoughts and emotions were rushing through us and we could barely think in our car as we were crying uncontrollably after our pediatrician delivered the shocking MRI results regarding Isaac.  Through the tears we managed to tell each other, “God is good and HE CAN and WILL use this and us for good”. 

The next day we traveled to the University of Iowa to meet with a neurosurgeon and radiologist to discuss how we could treat Isaac.  Our first meeting was with the neurosurgeon and just when we thought things could not get any worse, it felt like they plummeted into the ground.  The neurosurgeon said things like “He may be on a ventilator for the rest of his life” “Paralysis from the neck down is a possibility” “He may lose vision”.  Lastly, the surgeon said he has only seen this type of tumor two times in his life and has NEVER operated on it.  The only silver lining in this meeting was that typically a tumor in this location he said is usually inoperable and in Isaac’s case he felt like he could operate on him to remove as much of the tumor as possible.  That meeting felt as good as a truck hitting us…geez.  At this point we started thinking that we may need a second opinion from another hospital.

Our second meeting was with radiology.  While the first meeting knocked us down, this meeting picked us up and we grabbed some hope to take home with us.  The radiologists did a great job explaining how the procedure would work much better and told us that their main priority during the surgery would be to get as much of the tumor out as possible without risking damage to Isaac’s brain stem.  Their main recommendation was to have the surgery and then go from there.  We knew at that point we needed the best neurosurgeon to operate on Isaac.  At this point Allison and her mom stepped in and asked respectfully “If this was your son where would you take him?”  While they did not directly answer it, they did talk about a few reputable hospitals, one of them being Boston Children’s Hospital.  Allison then said we would like to get a second opinion and we were asked, “Where we would like it from?”  Allison spouted out “Boston!....Wait, Nick is that ok?”  From what we had heard and researched Boston was the #1 hospital for children’s neurology surgery and so of course, I agreed with her…we are fighting for our son and we were soliciting the help of the dream team so to speak.  Boston it is. 

The next day (Thursday) not much happened.  Iowa was working to overnight Isaac’s MRI results and send his medical information to the appropriate team in Boston.  That day we were blessed to have many calls, texts and time spent from our friends and family.  You all are simply amazing…every single one of you. 

Friday we got a call from Boston telling us that they had received all of our medical information and they have assigned a doctor to Isaac’s case: Dr. Liliana Goumnerova, Director for Pediatric Neurosurgical Oncology.  They told us she was going to call at some point of the day to discuss what Boston could do for our little IZ.  Allison and I tethered our expectations just above ground level.  We expected to hear slightly better information at best compared to Iowa.  The doctor called middle of the afternoon and Allison rushed into our home office and I followed after handing off Isaac to grandma.  The doctor was smart, relatable, confident and well spoken.  Here was the skinny.  The doctor was optimistic that she could operate on Isaac with a low risk of affecting his long term health.  Her plan is to remove a portion of the tumor and then complete a round of chemotherapy.  We asked her if she thought Isaac will live a normal life and her thought was that Isaac has a strong chance of living a normal life but will need continual follow up during his life to ensure the tumor does not “act up” again.  WOW.  We were blown away.  Joy overwhelmed us and we could not stop the tears as we were hugging saying “we have a chance, we have a chance”.  Despite this hope, this is still brain surgery on a 19 month old and the slightest complication will have serious long term consequences.

We will know more information soon, but it is looking like we will travel to Boston this week as our first pre-op appointment is scheduled for Friday, April 17th.  Isaac’s tentative surgery date is Tuesday, April 21^st. 

We would never wish this situation upon anyone and this time has been physically and emotionally draining for us and our family.  That being said, we have seen God all over this circumstance.  From the amount of prayers flooding in around the world, to clarity on finding the best neurosurgeon and children’s hospital, to staying positive in a grim circumstance we know GOD IS IN CONTROL!  We ask that each of you please come along side us in Isaac’s journey and read his updates and keep praying for our little man.  He has been an amazing blessing and inspiration to us and we hope that his life will have some sort of effect on you.  We love you and are thankful to anyone who reads this because we know they are thinking about Isaac.

With love,

Nick, Allison and Isaac Dose

HOPE

April 10, 2015

Today we received a glimmer of HOPE for Isaac's future.  We spoke with the Director of Neurosurgery from Boston Children's Hospital via teleconference.  She had reviewed Isaac's case and felt more optimistic that surgery and ongoing treatment for Isaac would be relatively effective.  This news was very different from what we were told in our first consultation at a different hospital just 2 days prior.
The surgeon in Boston feels that she could perform the surgery on Isaac with less risk to damaging his brain stem.  With that being said this is still brain surgery on a 19 month old; needless to say there are still plenty of risks involved.  Nevertheless surgery is still the best first step to treat our son and that is how we will proceed.  We are looking to schedule Isaac's surgery in the next 2 weeks and will most likely be traveling to Boston late next week.   Unfortunately the surgery will not remove the entire tumor; that would be too risky to Isaac's health and development.  Thus, after surgery he will most likely have to undergo a round or two of chemotherapy.  We still don't have all the answers but what we do know is that this will not be a simple surgery and Isaac most likely be affected by this for years to come.  

Thank you for continuing to pray for Isaac and our family.  Somehow during these difficult days God has continued to sustain us and get us through.  We have realized now more than ever the power of prayer, family and friendship. 

Isaac is still in high spirits and plays like any normal toddler.  He is an inspiration to us all. 

Love,

Nick and Allison Dose

ISAAC'S DIAGNOSIS

April 7, 2015

April 7th we heard the worst news in our lives.  Our little Isaac William had been diagnosed with a Brain Tumor on his brain stem and spine.  The tumor is rare (there aren't a lot of cases like his from what we are told), rather large and the location of the tumor makes Isaac's condition very serious.   With a tumor that is on the brain stem it is typically considered inoperable.  However, we've been told by neurosurgeons that they CAN operate on Isaac.  With our friends, families, acquaintances and churches all praying fervently for us we feel God has given us clarity that surgery will be our best course of action and that we needed to find the best neurosurgeon in the country to treat Isaac. 

With all this said we STILL BELIEVE God is good and we must trust Him in this but needless to say this is devastating news for us all.  We love you and please keep our lil buddy in your prayers.

Love,
Nick and Allison Dose