Showing posts with label #atticusarmy. Show all posts

Day 1 of Chemo. Another tender mercy, and what the..... are we doing???

Hey Army,


Well, we have officially started Chemotherapy as of 10 am this morning.  The chemotherapy treatment is made up of a whole onslaught of different medication.  Fun Fact, Chemotherapy literally means to treat therapeutically with chemicals, so really giving your child Tylenol is a form of Chemotherapy, however, it is typically accepted to imply the treatment of cancer. 

Be that as it may, Atticus will go through 2 primary phases in his chemo treatment.  The first phase will consist of 3 cycles that will that typically last 3-4 weeks each.  During this cycle, the chemo drugs that he will be given are Vincristine, Etoposide, Cyclophosphamide, and Cisplatin.  On top of this, he will be given a few different prophylactic drugs for nausea, and to protect his bladder and kidneys, and for an immune system stimulant.  I think, rather than spend the time right now explain each of these and the side effects I will kind of hit on them as time goes, and then create a separate page with each of the explanations.  I am sure that there will be a LOT of information that might not make sense at first but as time goes on we will have an ARMY of experts!!!

So onto some AMAZING NEWS.  If you recall on the post " And now the whole story of a whirlwind of personalities, and tender mercies" ( you can click on it to recap if you wish), Emmie and I were the recipients of such an amazing miracle with the disappearance of the masses at the base of his brain stem.  In that same radiology report where they found those masses, they also found metastases all down his spine.  After the tender mercy we received they were inclined to do another full body MRI to re-evaluate his spine as well and double check the brain stem.  Well, that was our MRI we had yesterday.  I am now so VERY thrilled to let you all know that he OFICALLY HAS NO METASTIES ANYWHERE!!! 

Emmie and I are just so beside ourselves, and so amazed that we have been afforded two amazing miracles, and we know it is thanks to the amazing army we have behind us.  So ATTICUS'S ARMY, thank you from the bottom of our hearts.  We are so humbled at the faith and strength of this army.

Well, now on to the day's events.  As already stated Chemo started this morning at 10 am, and continued until 5 this evening.  Each time we come in for the beginning of a cycle, his routine will be about the same.  Chemo during the day, and control of symptoms the rest of the time.  Atticus, for the most part, did really well throughout the day.  They did have to start giving him steroids again, so we did start to see his ROIDER rage come out a bit.  Hopefully, it won't be to bad this round as he doesn't have to be on it near as long or as high of a dose as he did after his surgery.  But other than that we saw some fun glimpses of our cute, outgoing, strong willed little boy that we so adore. 


Atticus was quite attentive when we started chemo this morning.
After chemo started we got a fun visit from Grandma, aunt Ashley, and his brother and sister.  We just love, love, love having all of our children here and are so happy that we stuck to our guns to ensure our little family unit stays together.  If you all could see precious little Atticus's face each time they come you would immediately understand.  It just lights up with excitement and makes him feel at home.  Atticus, of course, wanted to play with them so off we went to the halls again.  While we were out touring and playing soccer, we ran into some clowns that go from room to room at times with musical instruments.  They pulled out some bubbles and of course Atticus liked them right away. 




After that, We had a little nap but then it started.  Atticus was fast asleep and then out of nowhere he sat up spit his binky out and threw up all over.  We felt so so bad for the little guy.  He just looked up at us like what the heck was that.  We could immediately tell he didn't feel well at all.  It is so hard as a parent knowing exactly what is causing your poor little child to be sick, but have to make the choice to continue giving him the thing that makes him sick.  Later in the evening as we finally got his nausea under control (for the time being) I looked at Emmie and said, " What are we doing here hun?  How did we end up here?"  And it's true.  We were so excited about our new adventure, we had the kiddos all registered for school, even had a back to school special dinner night and everything.  Then our of left field we are living our of suitcases in someone else's home hundreds of miles from our own.  And to top it all off we are making our little one feel like..... well you know. 

We, of course, see the bigger picture and understand the necessity of the treatments.  But if any of you find a way to explain that to a 21 month old, to make it all better??? Please Please share. 

Mom, Dad, and Atticus all snuggling just before bed.

Another thing that Emmie and I are just sick about is that our two other kiddos are starting school tomorrow.  Which in the big picture we are very happy about.  They definitely need some structure and normalcy in their life.  But we are just so so sad that we don't get to send them off.  We always have a special breakfast, take first day of school pictures, wait anxiously for them to get home and talk all about their first day of school.  On top of all of that it is Ryker's first time going and they have all day kindergarten.  I know that they are in good hands with Grandma, and aunt Ashley.  But it just isn't the same with out Mom and Dad.  I sure hope they do well. 

Thanks for all of your support!
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Super special post today that just couldn't wait, "I SEE AN ARMY"

Hey Army,

We are still awaiting the final results from our MRI that we had yesterday evening.  But I in the mean time I just wanted to take a moment and thank EVERYONE that has helped support us.  We have had so many people help in countless ways, from family support here at the hospital, all the kind thoughts, words, and prayers we have received.  We have gotten many fun packages that Atticus has loved opening and we have cherished each and every one of them.

Atticus waking up from his 5th MRI.  I love his cute little smirk.


Emmie has had a wonderful group of friends that has been with each other through many hard and difficult times, as well as all the happy ones.  I have seen the way they lean on and support each other throughout our wonderful 10 years of marriage.  It has been a very difficult thing for my lovely bride to have to leave them while we have pursued this Veterinary school adventure and ESPECIALLY during our most recent struggles.

In spite of these obstacles, they have been so supportive in many different ways.  Most recently in the form of poetry.  I just want to say thank you to Brielle and Jess for their heartfelt words and sincere emotions that we felt as we have read these words many times over.


I See An Army

You see a child; face is pale and faint.
Weakened by needles, fear and fate.

I see warriors battle- ready paint;
Patiently forged, as you worried wait.

You see a child sleeping day and night,
Exhausted from endless tests and trials.

I see a GIANT gathering might to defeat the village of tubes and vials.

You see tumors, a fight with cancer.
A demon, a lump, is all you see.

I see faithless fault in your answer,
For this cancer must fight ME!

You see a soldier standing alone,
This is his battle, his solemn war.

I see an ARMY, oh how it's grown!
Angels and prayers and more and more!

You see we are here for a sickness,
For doctors to treat and heal

I see we are sent here to witness,
And to grow, love, and to feel.

You see winning as life over death,
As triumph overcome tragedy.

I see pure love is victories breath,
Exhaled from here to eternity.

You see a child; body frail and faint
Weakened by needles, fear and fate.

I see a child, a mission of grace;
A CHILD, just a child
Building armies as you worried wait.


I feel that this is one of the most beautiful things I have ever heard.  While it is true I may be somewhat biased by the event as of late, but such a heartfelt testimony of a lasting friendship that has matured through trials and love.

All the words I have is,

Thank you from the bottom of our hearts.

Please take the time to comment below and tell us what you see?, and share if you feel so inclined.  Let's help our little soldier grow his army strong. 

Click here to comment. I SEE AN ARMY
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Another surgery, and the begining of many hard times to come.

Hey army,

Well, the week has finally arrived.  We got a call last Friday from the schedulers here at Seattle children's, and she informed us that we needed to check in Monday morning at 7 am and that we would be admitted for 5 days!!! 

This is not a place you EVER see your self having to stay


We, of course, are VERY happy that we ended up here at Seattle Children's, and have been so so impressed with the quality of care we have received.  Without it, we would not have our little Atticus with us today.  Having said that, the prospects of Chemotherapy is somewhat disheartening.  As many of you know, I am in Vet school so I feel like I have somewhat of a grasp on many things the doctors have come to speak with us about.  Having that knowledge has been a boon in many circumstances.  I think, though, that this is not one of them.  I am so grateful for modern medicine and the things that can be done are just miraculous.  I fully understand that we need the treatment that Atticus is about to undergo.  I don't know, I just think there are some hard times to come. 

Well, sure enough, Monday morning came, Emmie and I woke up pretty early to get our bags packed and get ready for the week.  We made it to the hospital shortly before 7 am to get checked in, and we of course were in the wrong area.  Those of you that might have been to Seattle Children's may know, but for the rest of us, it is a pretty big hospital.  We, of course, went to the wrong area of the hospital to check in!!! ARGG...  It may be true that we weren't told, or with all the phone calls we got last week, I very well could have forgotten.  In any case, we ended up on the surgery floor right around 7:15.  We got Atticus checked in and right around 8:30 they took him into surgery to get his Hickman Line placed and get an LP (lumbar puncture).

Momma getting loves before he leaves for surgery.

 Atticus was so funny after they gave him is pre-medication for the surgery.  It took about 10 or 15 minutes to start to kick in and we could for sure tell!!  Just prior to this Atticus had his full grump face out.  But slowly he started to get a little happier and started laughing.  We started to ask him to say things and the funniest one was Dad.  For some reason whenever Dad came up he had to yell it.  Everything else he would say normal but Dad had to be loud.  It was quite comical



The Hickman Line is what they will use for the duration of his treatment.  It will be used for the Chemotherapy drugs, fluids, and blood, plasma, and platelet transfusions.  The Hickman line is a little bit different that the typical port many people think about when you talk about chemo.  Our is what is called a dual lumen Hickman line catheter.  It is pretty nice in that it allows them to do multiple things at the same time.  It enters on the right side of his chest, and the surgeons tunnelled under his skin up towards his neck.  The line enters his right jugular vein, then travels down the vein and stops just above the base of the heart. (fun fact, the base of the heart is the top, or closer to the head.  The bottom of the heart is termed the apex)  Here is a fun little diagram that kind of explains it.








So, finally around 12:30 Atticus was back in our room after receiving his Hickman line, and doing the LP.  They are doing the LP so that they can see if there are any cancerous cells floating around in his spinal fluid.  As you may or may not remember, any primary brain tumor is restricted to the CNS (central nervous system).  So the only places we look for the cancer is in his brain and spinal cord.  So by doing the LP it gives us a good idea if there is a possibility of metastases down the spine.  Today (Tuesday) they will do another MRI - number 5 - and between the LP cytology and the MRI they will determine if there are any or the extent of the metastasis.  That will determine the intensity of the treatment we will start later this evening or tomorrow. 

The rest of Monday was uneventful as far as procedures.  We just got settled into our new room.  Atticus roamed the hallway, and we played soccer a bit.  We meet a few of the other kiddos here at the hospital receiving treatment and many of them have little cars or trikes they roll around in the hall.  It is actually pretty cute.  We are thinking of getting him a little car he can push around the hospital.

Playing soccer


Tuesday

Atticus did so well last night sleeping.  We were finally able to get a bed again and it is so much nicer to have him be able to sleep.  At first, he was having to stay in a crib, and he was up until like 3 in the morning every night screaming and crying.  Enough was enough!!! He is much happier laying next to mom or dad.  In fact, he slept so well last night he didn't even wake up for his vitals check, or when they drew some blood for labs.  It was great. 

This morning we had an audiology screening test.  Some of the medication that he will have to get for his Chemo treatment can cause permanent damage to his hearing.  So prior to starting Chemo, and prior to each of the 6 cycles he will go through they will do the same screening test.  If he starts to lose his hearing they may have to amend his treatment protocol a bit. 

I think that Emmie and I realize that there can, and possible will be some consequences to some of the treatments and medications that he has to go though.  But if you sit back and suppress the frustration, and at times outrage, it is much better to have a son with some hearing deficits, than to not have a son at all.  And quite literally that is the choice we are faced with every day.  There are very few if any things in life that can compare to that choice. 


That about sums it up for the morning, Atticus is laying next to me snoozing away.  They should be starting fluids here in an hour or so, and we will have our MRI this afternoon.  We will let you all know what happens.

Thanks for all your prayers and support.  We couldn't have gotten here with you, our army.
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More fun surprises!!!

Hey army,

Well, Friday was quite the crazy sequence of events! We apologize for the delayed post! on Friday morning we met with the neuro-oncologist. She brought the pathology report for us to read through. The report confirmed that Atticus's tumor is Choroid plexus carcinoma. This type of cancer cell is very rare! In fact its ONE in a MILLION that get this type of cancer! The oncologist informed us that 90% of the cure and success of treatment is in the resection of the tumor! The oncology team is very pleased as the Surgeons were able to remove 100% of our sweet boys brain tumor! Again hooray for those tender mercies and blessings!

The oncologist discussed with us the next step in this process! She said this will be a long road or a marathon ahead! Atticus will need to start chemotherapy, his treatment will consist of 6 cycles, each cycle will last 3-4 weeks. We will need to do his treatment up here in Seattle at the children's hospital. They do not offer this type of treatment anywhere near Pullman, WA. The treatment will last a minimum of 6 months but could be longer. His treatment is very aggressive. However they will ensure to make sure his little body can handle each cycle. Atticus will need several blood, platelet and plasma transfusions during his treatment! They will also be doing stem cell replacement as well.

His chemotherapy cycles will consist of 3-4 days of in-patient hospital stay while he receives his treatment. Then 2-3 weeks off treatment where he can be home(in Seattle). The doctors informed us that we probably will still be in the hospital every few days even off treatment because he will be needing transfusions, blood work, physical therapy, and other things in between treatments. We would be lying if we said we aren't terrified for the days ahead. Nothing is worse than seeing your child suffer and in pain. We will have to watch our precious boy endure pain and suffering we cannot imagine. Our hearts ache that he has to go through this but at the same time we have found great joy in the success we have had in only one week here at Seattle Children's Hospital. We have truly been watched over and blessed in ways we never imagined possible. There have been days where we feel we cant take any more, or that we don't have the strength to carry on but somehow, someway we are carried through and pushed way beyond what we ever thought possible. Somehow a ray of sunshine shines through and those tender mercies come our way and we are strengthened with courage to carry on.

After our meeting with the oncologist they surprised us and told us that they were going to discharge us from the hospital that same day. They wanted us to go have some family time and be normal, (if there is such a thing as normal anymore). We were beyond excited! We knew it would be the best thing for Atticus. Lately Atticus would just sit in the hospital room and point at the door and sat out or out the window and cry to go out. It broke our hearts! Atticus loves to be out and about, again another amazing blessing!The hospital booked us a room at the SCCA, which is the Seattle Cancer Care Alliance. They gave us tickets to the Seattle Aquarium and told us to take this next week and enjoy because once treatment starts it is intense! Once we received the news that we were being discharged Emilie's parents rushed to Spokane, Wa to meet Emilie's sister with the kids. Sweet Katti had been watching our kids all week for us while we awaited the next step in Atticus's treatment. We cant thank her enough for her kindness and love in caring for our kids. She really is the greatest sister EVER!  We knew Atticus would be so excited to see his brother and sister. His whole world lights up when he is with them!

So a couple hours later we were discharged and on our way! We cant tell you what an incredible freeing feeling that was being able to take our baby away from that hospital. Although my heart was somewhat uneasy knowing we would be right back there in another week. We decided to not think about that but to focus on our little family and make amazing memories together this week. We will forever be grateful to the hospital staff for giving us the time. It is treasured and cherished time that we so desperately needed!


Atticus was beyond thrilled to leave the hospital and has shown us such joy and hope! Atticus truly is a pillar of strength, and a fighter! He was so happy to be together with his family! We are loving every minute of this time together!







Emilie's parents left Seattle this afternoon to head back to Utah and that was really hard! They had been here with us the last 3 weeks. They were here for the MRI when we received the devastating news and they have been right there with us every second along this journey. We are so grateful for FAMILY and all their love and support. Goodbyes are never easy, but we will be having family come out to Seattle and rotate on a schedule to help with the kids etc. about every 2-3 weeks. We are so grateful for the love and support that each family member has given our family. It means so much to us!

We had a few visitors today and we have just been mainly relaxing today and doing a little exploring of this beautiful place. Its been a really fun day!



Caleb will start traveling back and forth each week to Pullman for his his Veterinary Medicine Schooling at WSU. Its about a 5 hour long drive each way! We are so grateful that his school has been so willing to work with us, given this difficult situation. His school and class have been so kind and supportive! They even had these green Atticus's Army bracelets made for us! His entire Vet med class is wearing them to support us! We cant thank you enough! Its incredible the amount of support we have behind us!

We will push through and stay strong. Its going to be very busy and there will be many hard days ahead. Looks like we will be here in Seattle for awhile, but we are okay with that because we know Atticus is getting the best care possible here. So for now we will soak up every second of this family time and make memories that we will never forget!! Thank you again for all your prayers, good thoughts, love and support we could not have gotten to where we are today without this ARMY!! Please continue to pray for our journey ahead, and that our sweet Atticus will be able to endure the long road ahead!
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Recovery Days

Hey army,

Sorry, we didn't post yesterday, everything is going pretty well.  Yesterday was uneventful for most of the day but the one big thing that did happen is that we had to say goodbye to our other kiddos for the next week.  We have been trying to get into the Ronald McDonald house here that is right next to the Hospital, that way we could still be together as a family.  Unfortunately, there is quite the waiting list for that and we are not sure how long it will take.   So we will start by having them stay with family in Spokane this week while we are awaiting results from his tumor, treatment plan and go from there.  It is really hard to have them away from us, and not be in our little family unit.  We will have to find some way to get them here with us if the McDonald house doesn't open soon.


Kezzie and Ryker saying bye to their little brother.

Today has been a pretty good day.  Atticus slept really well last night, Emmie and I did much better than other nights, but we nervously still woke up about every 2 hours or so thinking something was going to go wrong, or that he was going to wake up.  He didn't care either way and just had a great night, which we were very grateful for!  He definitely needed it.

So each morning the Doctors come around to each room and have what they call "rounds".  They go over the general background on us the patient, all current meds, reports from the nurse how the last 24 hours went, and then the plan for the day.  It is pretty nice as I get to sit in on them each morning, and if I have any questions or comments I get to chime in as my little heart desires.  This morning, however, we were going over blood levels, and post brain surgery they always put patients on anti-seizure medication preventively.  The medication that Atticus was getting has to be tested to obtain levels in the system to ensure they are at therapeutic level.  Atticus's this morning were VERY low, almost not there, so they determined that they needed to give a "bolus" or a lot at one time to get the levels up to make sure he wouldn't have any type of seizure.  So they went ahead and gave a loading dose of about 10X what he had been use to getting.  

Let me just tell you how LOOPY he was.  It was the funniest thing I have ever seen, at least a first.  After a bit his eyes started wobbling (nystagmus), he started grabbing at the air, and kinda rocking his head all around.  It is now 6:30 at night, and he is still feeling the effects of that medication.  I understand the reason for it, but Emmie and I felt so bad for the little guy all day.  His eye tracking or nystagmus got so bad at one point that he got nauseated and threw up.  Poor little guy, but in the end, it is much better than getting a seizure. 

The next exciting thing of the day is that we got to leave the ICU!!! Atticus had done soo amazing.  He is starting to do all his old mannerisms, saying his cute little words, and definitely has his feisty little attitude back.  He LOVES to tell the nurses NO as soon as they walk in.  He gets his little finger out points at them and says NO! 

So....... welcome to our new room!!

Getting ready to leave the PICU to our new room.


We even started to get our smiley boy back this evening!!!

Atticus was SO SO cute this evening.  He must have been feeling much better, he ate really well (at least for him) and started pointing at things asking what they were, was saying hi and bye to everyone that came in.  Loved the Balloons that he got from Grandma and Adam and Emilie George (THANKS), was laughing smiling all night.  Emmie has been able to hold him most of the afternoon and evening and she has just been in HEAVEN. 

Other than that not too much to report, we are just waiting on results of the Histopathology and then the Tumor board meeting tomorrow.  I have to drive back to Pullman (~5 hours) on Thursday, so we will be meeting with the Neuro-oncology team on Friday.  Hopefully by then we will have a rough idea of what our future will hold!

Thanks army for all your support
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Day 8

Hey Army

Atticus really did well last night, there was a few times that he woke up, but everything was just great as Emmie and I took turns being up so that if he woke up the first thing he saw was his mom or dad.  Today has been a great day in that we got to take out all of his IV lines, his arterial line, his foley (urinary catheter), and they placed a PICC (peripherally inserted central catheter) line.  This will be so much nicer for him, he had the hardest time with his IV catheters they kept blowing, and they had the most difficult time getting a new one in, and Atticus HATED getting a new one.  The PICC line will last a few weeks so all around Atticus should be much happier with this.

Originally he was suppose to get his PICC line first thing this morning around 8 am.  But there ended up being multiple emergencies all at the same time so we had to wait until about 1 pm.  He got back sometime around 2:30 and looked so much better with out all of the lines running to him.  We now only have the one PICC line and the EVD (extraventricular drain) that comes out of his head.  Atticus is MUCH MUCH happier.  We are now completely off of any sedatives and he is resting somewhat happily in his bed.


Here is an idea of how many lines he had going to him pre-PICC line

Earlier this morning we got a visit from our neurosurgical team, we were so excited to see the results of the MRI that we had been waiting for yesterday.  Our AMAZING surgeon said that he was very happy with the results of the surgery and that there was no visible tumor remnants left in the brain.  It is pretty amazing how resilient little kids are.  If you recall from yesterday's post I said that we were hoping that his brain would reabsorb that fluid and fill in the area of the tumor.  Well WA-LAH it did! 

Before surgery on the left and After on the right

We couldn't be any happier with the results of the surgery.  Like I can't even believe how amazing it looks.  Atticus is still a little weak on hes left side (in case you didn't know your right brain controls the left side of your body and viceverse) but he is able to move both his arm and leg when he want to.  So honestly it is amazing news!! We feel beyond blessed!

On the other hand we did also go over the spinal MRI, and going over that with the surgeon and reading the radiology report there is definitely metastases all the way down the spine.  They let us know that we will for sure have to get a port put in, in the near future, and when the results get back from the tissue that our pediatric neuro-oncologists will be meeting with us as well.  We obviously are not entirely thrilled with this news AT ALL and are not sure of his prognosis, however, having been pre-warned yesterday immediately after surgery we were at least prepared.

While Atticus was getting his PICC line we had some time to with family and of course our wonderful kiddos.  Also on a fun note, THANKS THANKS to all of you that have sent us goodies!!! We have loved and cherished every one of them. Here are some pics.

Atticus Army banner
Made by Katti
Emilie's sister Katti surprised us with a some camo decor to cheer up his hospital room! we love the cute camo theme for Atticus's Army! Thanks Aunt KIKI for brightening his room and our day! your truly the best sister EVER!!

Thanks JESS and AUBREY for the surprise packages!! It brightened my day more than you will ever know!



Heres the fun treasures Emilie received from her friends! a journal, comfy pants, a neck pillow, blanket, and pens!

The Cupcakes are AMAZING Amy, and already gone!
Thank you for your sweet card and for thinking of us! We sure feel so loved




It was fun to spend time with our sweet kids and get them some 
special prizes at the hospital gift shop!

We have just been overwhelmed and so appreciative of all the love and support.  And, honestly there are no words to express how much it has helped.  We got a very special visit today from one of Emmie's dear friend's Landon Jones.  Their families have been close friends for nearly 25 years, which is most of Emilie's life.  Landon lives up here in Seattle with his family and generously offered to bring us and administer the sacrament.  I can't even express how much this meant.  He showed up here at the hospital with 3 other concerned elders, and administered it to both of our families here at the hospital.  It was a very special experience......

Thank you Landon.


On another happy note, Atticus has been doing great this afternoon so much so that my dear sweet wife was finally able to hold him!!!! It was such a happy time.  She really was having a rough go ever since surgery not being able to hold and cuddle him when he was sad or cried.  Our nurses came in and said, "he looks like he is doing good do you want to hold him?" We were like is that even a question? 






With the EVD we are only allowed to hold him for 30 minutes at a time up to 3 times in any given 24 hour period.  But it was worth every minute.We treasure our time with our baby boy even if we just have to sit by his crib and hold his sweet hands and rub his precious head! It is just such a blessing he is here with us and recovering! We are forever grateful for those tender mercies each and every day!  At this point we are working on getting little Atticus to start to drink and eat.  Hopefully he will stop being so stubborn, although I am sure he doesn't feel much like eating, but we need him to eat so that we don't have to place a feeding tube.  I mean the world wouldn't be over if he had to have one, but I think he will be much more happy with out one.

Hopefully, Atticus will be in the ICU for about another day, and then we can be moved into the tumor ward.  Not that it would change much in our life as we are still at the hospital full time, but it would be a step in the right direction.  We are still waiting on results on the tumor which should come before the Tumor board meeting on Wednesday.  So up until that point we are just in limbo, and recovery mode from his surgery. But honestly we couldn't feel more loved or blessed! Prayer is real and faith can move mountains! So thank you EVERYONE from the bottom of our hearts!

Thanks for all your support ARMY!!!
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Day 7

Hey army,

It is just crazy to me that it was only 1 week ago that we found out that our little bug had a ginormous tumor.  I seems quite surreal for Emilie and I, and for us at least the world has seamed to completely stop turning.  We have been so so grateful for all of the amazing support we have had both from family and friends.  It was a very odd experience last night when I finally pulled out my school planner that I generally look at religiously and realized that my first exam is one week from tomorrow.  Somehow it doesn't carry as much weight, or nervousness as it did before, I guess it is true what they say, " Everything is a matter of perspective."

So Yesterday, sorry I sat down just barley to start writing what happened today, and then I realized that I never ended up finishing yesterday's events.

So for Day 7!!

Yesterday was a pretty exciting day.  Atticus did uh well ok over night after his surgery, he did not like the intubation tube at all.  He woke up several times kind of gagging on his tube and wanting to sit up.  He had to have some extra medication about every 2 hours to help keep him calm.  we felt so bad for the little guy.  We just kept hoping that it would be able to come out sometime today.  However, it is possible that it can be in for several days.  We will see!!

Morning finally came and we were informed at around 2 or 3 in the morning that Neurology wanted to get their post surgery MRI to see how his little brain was reacting to the surgery.  If you think about it immediately after surgery there is more or less a big hold in the center of his brain.  Often times after a brain tumor removal the brain somewhat collapses and fills the void where the tumor was.  The hope is that as the brain continues to produce CSF (cerebral spinal fluid) it will absorb it and fill out where it should.  However, it isn't always the case.  I like to think of it like a sponge.  When you first get a sponge it readily expands and fills with water.  If you compress it for a short time it bounces right back match the rest of the sponge.  If you compress it for a long time, it somewhat loses that plasticity and when the pressure is released it has a difficult time bouncing back, and sometimes it doesn't quite work. So fingers crossed his brain is just waiting to go right back!!

After returning from his MRI we found that his right arm was VERY puffy.  We felt so bad for him, we ended up chalking it up to what is called dependent edema, or in other word the fluid follows gravity and gets swollen.  After his surgery, understandably so, they kept him quite sedate both for his safety and comfort.  His arm was down below him all night and so jump forward 24 hours we got a puffy arm.  Luckily the 2 IV catheters in that arm were ok so we were able to scratch that off the list right away as the cause.  In spite of the intact catheters the ICU staff determined that we should pull them both out to stop it from getting any worse.

Atticus, bless his little heart, has the WORST veins in the entire worlds to place a catheter.  Which is why they were so hesitant to remove them in the first place.  So after quite a few attempts in his other arm and both feet we determined that we would have to just try it later today if extubation happens.  Atticus was able to get a decent nap in after all the IV catheter excitement which we were very grateful.

They let us know during his nap that sometime around 3pm we would be able to take out his tube!! This was such great news.  Not only does this mean that Atticus will feel much better and hopefully be able to sleep better, it means that he is stable and recovering very nicely, so much so that he can breath all on his own.  So over the next few hours we slowly turn the amount of oxygen he was getting down to room levels, and allowed him to start breathing all by his lonesome.   So Happy Day!!  3 O' Clock rolls around and in comes the team to remove his breathing tube, if you remember there was one other important thing that had to happen first.  It was time for some more IV catheter fun.  This time at lease he was partial sedated, which made it much more tolerable but that did not in any way, shape, or form help with getting the catheter in.  Honestly I just really think that the rest of his body is just as feisty as Atticus is and all the veins got together and went on strike.  After an exhaustive effort, an IV placement light, and an ultrasound we get one in, and we will protect it with out lives the rest of the time until we get a PICC  (peripherally inserted central catheter) line in hopefully tomorrow or the next day.

Unfortunately, because of all the sedation we had to give him for the IV, we needed to wait for a bit to take his breathing tube out.  6 O' clock finally rolled around and he was awake enough to get it out.  When a baby finally starts to wake up and looks at you and tries to cry but can't..... it's the saddest thing in the world.  Atticus has very expressive facial cues, and there was no doubt on what he was telling us.  I think it most likely went something like this," Look it Mom, I think I might cry a lit..... wait whats this?!? I can't make a sound... (cough,cough), ok I'm panicking, what the heck is this, I can't make any sounds....."  then came the look that could only mean...... "DAD, you did this to me didn't you.  At least his panic didn't last to long, and the tube was out in a a jiffy.  He did such a great job and was excited to see his Dad.  His Mom stepped out of the room during this excitement, but he asked for her immediately so I ran and grabbed her and all was well in the world.

The rest of the day was pretty uneventful, we mainly just took care of atticus, watch Finding Nemo several more times, and waited for the Neuro team to make their rounds and discuss the findings of the MRI he had that morning.  Sometime around 2 or so we had a member of the neuro team come to check up on us and said that the surgeons would be by later to show us the MRI.  Fast forward to 8 pm and still no sign.  The previous lady did mention that everything looked just as they would have expected for a post surgery MRI so we weren't to worried, but we still very much wanted to see it.  By the time 10 pm rolled around we decided that they weren't coming and got ready for bed.  Hopefully tonight is much better than last night. ☺

Thanks for all your support ARMY!!
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Day 6, and the real surgery update

Hey Army,

 Sending him off to surgery.

Atticus is doing well.  He is quite the feisty little kiddo.  The surgery went phenomenal yesterday.  The doctors came to speak with us right after the surgery to give us an update on how it went that they said that they were very surprised with how well it went in spite of all the craziness throughout the surgery.  We knew that the tumor was pretty vascular from the information that we were able to get from the angiogram a few days ago.  In light of that information they did change their approach a few times to hopefully alleviate some of that bleeding.

As we talk about blood loss or hemorrhage in an infant is of great concern so they were prepared with a lot of blood products there for replacement if/when needed.  As we all know hind sight is 20/20 and it was a really good thing that they had all of the products there ready to go.  The doctors said that this was one of the most challenging surgeries they have had to do in a really long time.  As soon as they accessed the tumor, they had to start replacement blood therapy.  The doctor said, " it was was just a damn bloody tumor!"  They had to use about 2.5 liters of packed red blood cells, about a liter of fresh frozen plasma, and various other clotting factors, and fluids during his 8 hours surgery.  Just to give you an idea as many of us don't really know how much blood is in our bodies, in an infant there is about 80 ml per Kg.  So Atticus weights in at 11.2 Kg, so he has a total body volume of about 880 mL.  So if you do the math, which we did haha, they had replace his entire bodies fluid volume about 3-4 times. 

The surgeons did tell us that it is a VERY aggressive tumor and is definitely cancer. :-( 
If you recall they did a spinal chord MRI along with the stealth MRI yesterday, and they said that they saw some suspicious "sugaring" down the spinal chord, and after seeing the tumor during surgery they understand what they saw on MRI.  



As we sat with the surgeons after the surgery was over, we felt great joy that the surgery went so well and that our little Atticus did so well! We decided as a couple that despite the horrible news that it is in fact cancer we need to focus on all of the blessings that took place yesterday. The surgery went better that expected, they were confident they were able to get all the tumor out and our sweet little angel boy was still here with us!! We will take this one day at a time and work through this. For right now we are focusing on getting Atticus recovered  and healed from this major surgery. The surgeons explained that this will be a marathon and will take time. We won't know what our treatment plan will be until the histology report comes back. We should have good idea of what we are dealing with and what this all in tells by next Wednesday or Thursday. Our neurology team meets with the tumor board every Wednesday and with a team of about 50 people who will all review his case and the type of cells we are dealing with. The Neurology oncologist who we met earlier this week came here from Harvard University and he explained to us that this hospital has access to any type of treatment that is available in the World. He says whatever treatment Atticus needs they can get it here for us! How comforting this is for us! 

The anesthesia team just did a phenomenal job, despite the hemorrhage and duration of the surgery his blood pressure stayed consistent, all blood values and electrolytes, and clotting times stayed in normal ranges both during the surgery and after.  So there is honestly so many amazing things that happened yesterday during the surgery and we are just so grateful.



 
I don't believe there is anything that can prepare you for walking in on your baby after surgery and seeing a million tubes, cords and machines hooked up to your sweet baby. We were overjoyed to see him and we could feel his sweet spirit the second we entered the room. At the same time though your hearts cant help but feel broken and helpless. Tears were streaming down our cheeks as we watch him  lay there intubated and peaceful, we walked over and touched his sweet face and gave him a kiss. He oped his eyes and you could tell he knew it was us! Our hearts melted! All we could think of was that he was safe and right here with us. My heart longs to be able to hold him and snuggle him. Hopefully at some point today we can hold and snuggle him, as long as the MRI looks good and he can be safely extubated. He is strong and a fighter he has shown strong moments on both sides already. His left side is still a little weak but that is to be expected and will get better with time! HE looks so good considering the seriousness of his surgery and blood loss and his blood work looks great too! There have been so many tender mercies and blessings on our behalf and we have seen so many miracles already! 



Yesterday was a day full of tears, fear, and great joy. We will forever be grateful for our family who was all here to be with us and carry us through! Along with Atticus's Army who have prayed and fasted on our behalf. We can truly tell each one of you that we felt peace and comfort yesterday. We wish we could personally give each and everyone of you a hug and tell you thank you. we have felt so much love and support from this army behind us. We need each one of you in this journey!  We will continue to stay strong and we will work through this one day at time. We are not about to give up on this fight for our sweet boy.

Thanks for all of your support and prayers. 
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Surgery update

Hey Army,

Just a quick update, Atticus is out of surgery and we are still waiting to go back and see him.  He did lose a LOT of blood the anesthesia team did great.  There will be much more information to come, Emmie and I just need some time to process everything from speaking with the surgeons, and will update you a little bit later tonight.

Thanks for all of your support.
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Surgery Day!!

Hey army,

Well, it's about 2:30 am right now and guess who can't sleep. The dad!  As I sit here with our little boy in my arms I can't help but wonder how on earth I got here. While I am so grateful for being here at this wonderful hospital and extremely grateful for all of your support I still catch my self hoping that this is one big sick joke. And  that someone is going to come in laughing and say,"just kidding!!  You should have seen there look on your face!!"  I of course know that isn't true and that it is all too real. In about 4 hours Emmie and I will have to hand our little baby off for a surgery that he will most definitely die with out.

I think that is when it really hit home. The chief neurosurgeon came to speak with us again yesterday and we were talking about possible and likely sequela of a surgery like this and the first thing he said is," well one thing we knows for certain is that with out this surgery, it will take Atticus's life. So right of the bat there benefits far out weigh the risks."  I mean I think that we both knew and understood that however it's a very different thing to have someone say it to you.

One big worry with the surgery is the loss of blood due to hemorrhage. Adults can cope with this much better than our younger counter parts. While we can lose a few liters of blood in a surgery and have it replaced with saline and be  OK, infants are at great risk with the loss of very little blood. Atticus will have 4 units of blood or about 2 liters, ready for a transfusion which he will likely need. We are grateful for the technology and the tests to help ensure there will be no rejection or allergic reaction to the doner blood, bit it is always a possibility.

I just hope hope pray that the piece and calmness that I have felt most of the week will carry me through the day and that everything will be just fine. I want to look back a few years from now, with Atticus, and feel grateful for the strength, love and support we received as a family from our army and not the fear, emptiness and discourage I am currently battling.

I fing comfort in medical knowledge that I have attained over there last few years in school and am very grateful for that understanding. I have faith on the staff  here and feel confident in their abilities. I feel the only thing left to do is to continue to have faith in the Lord, see and acknowledge his had in what and happened thus far, and have faith that he won't abandon our little boy now. So that's what I am going to do. I will be strong, and trust that even though it is out of my hands, I am handing him into better ones, that have already bled for him knowing they won't abandon him in his time of need.

Thank you all for your support, words of encouragement, prayers, and fasting. It has  not gone unnoticed. And although we can't reply to everyone know that we read and are thankful for each and every comment.  The next update most likely won't be until tonight after the  surgery and Atticus is back with us hopefully eating, drinking, and feeling much better having all the pressure in his little head gone!!

And thank you for being a part of Atticus's Army!!
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Day 5

Hey Army,

Last night went pretty well.  Emilie and I traded off holding Atticus, he doesn't much like his bed, nor do we really want to just leave him in there.  The plan for today is to get his MRI done sometime around 3:30 this afternoon.  That is going to be his only procedure today, then it is some food and rest for surgery tomorrow morning.  The morning today was pretty uneventful, we just relaxed with Atticus, and I got a little bit of studying in.  That is still one subject that hasn't been broached much,  it is so difficult to decide what is best for our family.  I am currently in my 3rd year of Veterinary Medicine at WSU.  The faculty and staff there have been so helpful with our situation, not to mention the AMAZING support network we are receiving through them and especially my classmates.  I just want to thank you so much!



The neurosurgeons came in a little bit later this morning to speak with us about our MRI this afternoon and they needed to put some of these little donut looking markers on Atticus's head to for GPS  points to be used to navigate the brain on surgery day.  We also had to shave our little bugs head.  It was so sad, looking at him it makes this whole thing really start to hit home.  Generally speaking as a parent you really have a lot of choices on what to do with your children.  Not that we are unhappy being here at all, but the circumstances under which we are here are not fun.  Emilie and I are just besides our self really feeling like all of this is out of our control.  We are trying so hard to keep positive attitudes, especially for our little Atticus.  It hs difficult to place your child in someone's arms and plead to bring him back to us, knowing you can't do anything but pray.  We have felt the Lord's hand in many things that have happened this week, and keep praying that they will continue in the coming weeks.







 Luckily we had a fun visit with family shortly after having to do this, so that was definitely helpful.  Our cute kiddos weren't quite sure what to think about the hair cut.  Ryker kept telling us that he felt for bad for Atticus.








As we await our MRI we just keep sitting here, kinda lost and not really knowing what to expect and how to prepare for the coming steps.  We have faith in the AMAZING staff here at Seattle Children's Hospital, and in all the prayers and thoughts from our Army.  Thank you so much for all of the support. 

Here are a few pictures I found while sitting here, thought you all might want to see them.  ;-)
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