Bump in the road

Andrew here checking in from an eerily quiet house.  Lucy has been asleep since 4:45 and Annie and Blaise had to return to the hospital this afternoon, more on that later.  Today marked the first day in a a month I did not see any glimpse of Toy Story or Charlie Brown.  After a 2 hour delay I returned to work this morning and left Annie to keep Blaise safe from the grips of Lucy.  I do love my job, especially the people there, but I never left the house so quickly!

CHOP home health care came by today and dropped off a pump, formula and pole to hang Blaise's feeds.  As Annie said yesterday, we are going to start feeding him at night to boost his nutrition.  See below, Blaise had some Pedialyte pumped into his system this afternoon.  I can't help but think this might have been helpful to me during my highly competitive/successful athletic career!

Blaise
So Blaise had a rough night, and an even more rough day.  Annie detailed our clinic visit yesterday, which told us that Blaise was physically in a rough spot.  I say that because at this point in his therapy, the chemo has been working.  But remember, the chemo's job is to kill the bad cells.  The cocktail of pharmaceuticals in his body is so strong that it also kills the good cells, and compromises his body immune system.  So while it works, it makes him vulnerable to other infections, infections that 2 months ago would not even phase him. He also is at an increased risk of infection because of his recent surgeries.  The port and the "button" are foreign bodies that his cells are still adjusting to.  (Side note: this post is sounding a lot like my sophomore biology notes.  I got a B+ in that class so I am basically a doctor.  Ms. Brown would be so proud I remember any of it!)   That being said, he got a fever last night that continued into the morning.  I'd like to think he was just sad because I went to work, but I know the biological factors at play had a significant impact on his mood.  Annie tracked his temperature, and we have guidelines for when to call and go in.  We call the NP with anything over 101.3 (high grade) or with 3 checks between 100.4 and 101.2 (low grade) with in a 24 hour period.  She called our NP after 2 low grade fevers, and they actually came up with a preventative plan to avoid waiting the full 24 hours, so they went into the clinic.  During the next cycle, this would be an out patient thing, but due to his recent surgeries and increase infection risk, this turned into an overnight admission.  So Blaise and Annie are back on 3 South down in West Philly.

What's going on there...  A few things.  Blaise is actually super pumped, he told me on a Google Hangout.  The bandage around his "button" has been removed.  He still is having a hard time letting people look at it, but at least its not that scary picture Annie posted a few days ago.

Funny story.  As the nurse's were going to access his port Blaise was heard saying, "No, I'm sorry, do not access my port!"  When his pleas were not heard by the medical staff, a resigned Blaise exclaimed, "Good grief!"  This led to a team decision have Child Life develop a plan for him to better understand what's going.

They see him as an incredible smart kid, that understands most of what's happening, they want to help him get over this anxiety associated with connecting/disconnecting his tubes.  Honestly, because after that, he's fine with whatever happens.  They are going to develop some type of chart/check list thing similar to the ones we use with our middle school kids who are not doing homework! Obviously, because Chemo Duck did not work! I am hopeful this will work, but Blaise does do whatever he wants, just ask Ms. Dottie and everyone else at St. Matt's.

One of the benefits of this trip to the hospital is that Blaise is able to get his transfusion, not the Saturday Morning Golf League type of transfusions his grandfather enjoys, but his blood transfusion that was tentatively scheduled for Thursday.  As I write this, the blood is hanging by his bed in room 313.

After the blood goes in, he will begin his overnight feeds tonight too.  All this in preparation to repeat it in a few days after cycle two.  The oncologist in the building tonight did tell Annie that some kids respond this way after the 1st cycle because it is such a shock to their systems.  And then for subsequent cycles they are better.  She also said some kids are just miserable the whole time and will be admitted after each cycle.  But since this is only his 1st cycle ever, we're going to pretend he is the kid that responds positively each subsequent time!

I think one of the best parts about all this is CHOP has a firm commitment to continuing to function normally.  After our visit yesterday, and today's issues, I have been searching the internet for medical grade bubbles I can wrap Blaise in.  But CHOP is telling us to do the exact opposite.  The have told us twice to go to the circus tomorrow night and keep our plans for his birthday Friday (which isn't much yet...).  I am amazed at the level of thought they put into my kid, and all the other kids too.  The only thing I can think of is that they can treat anything, so we should allow Blaise to be a happy kid, and if something screws that up, they can fix.  It certainly is reassuring to me with my low level of parenting skills.

Lucy
Lucy is crazy.  She was a terror this morning for her mom apparently.  She also kept trying to get Blaise off the couch and play.  She ran herself into the ground today and finally passed out with "Bots" before the 5 o'clock news! She did wake up at 7:30, and I asked her if she wanted to eat dinner.  She pointed to her crib, and asked for her boppy (pacifier), and went right back to sleep after a quick diaper change.  I think she feels like she needs to play enough for her and Blaise.

New nightgown and cowboy boots!

So it was not best of days, and on top of the Blaise issues, we had a pipe burst last night and our screen door broke.  All in all, not what I wanted to deal with, but it could have been worse.  

Again, thank you so much for the support, the cards, meals, prayers and funny text messages!  Everyone says how Annie, Blaise, Lucy and I seem to be staying so strong and positive but that is only a result of the people we have holding us up.  Thank you, form the bottom of our hearts, thank you so very much!

Clinic

Today

Hi Everyone, Annie here. Today we had our first clinic appointment. We arrived around 12 noon to the beautiful Buerger Center (new building where clinic is located).

Nutrition
We were greeted by the clinic staff and led to our room, where our nurse accessed Blaise's port and drew labs. Our main concern as of late has been his nutrition. He is disinterested in eating, and Andrew and I feel this is separate from any chemo related nausea, more related to being in and out of the hospital the last 3 weeks, NPO for tests, and just being out of his routine. We relayed these concerns to our nurse and our Oncology Fellow. They agreed with our concerns and we made a plan with our nutritionist as well to start overnight tube feeds- starting tomorrow!  The hope is that these feeds will re-stimulate Blaise's desire to eat- which makes sense if you think about it. Over the last few days, we've seen Blaise the most like himself after he eats something that could be construed as an actual meal-  he just is not doing it in a frequency that will promote healing and continued growth- everything that he needs going into surgery.


"Counts"
Another reason we will go to clinic at least once during our "off week" is to get his "counts".  This basically means a glimpse into his immune system.  We can predict that his immune system will be at his lowest, or nadir, approximately 7-10 days after chemotherapy.  So, I was very surprised to see how low he was today.  I knew what we were signing up for by giving him chemo, but when I saw his counts, it hit me like a ton of bricks. These numbers that I used to pass back and forth in nursing report on patients, numbers I cared about as a charge nurse trying to predict flow in and out, and finally as an operations nurse trying to anticipate admissions and discharges on a weekly basis. These numbers now were about my kid.  MY KID.  In my head I immediately started thinking about the bubble I would build around my child- exactly what I would tell parents not to do as I taught them how to care for their child with cancer. We are going to the circus Wednesday- and Andrew and I both considered not going once we saw his counts. We were told by our dear friend as well as our care team that we should proceed with our plans, because his development and pleasure also need to be factored into this equation.

But, back to those counts-  so here they are (above) and basically what that means is that his immune system is way down and we will need to return to clinic Thursday to likely get a blood transfusion. I will say that this part did not phase me at all- but created panic when shared with loved ones.  This is a very expected and normal reaction to the chemotherapy we are giving him.  He will need blood and platelet transfusions throughout this journey.  For those of you asking "what blood type is he?!?!  Can we do direct donations!??"  The answer is yes, however, we would prefer that you simply go to a blood drive and donate, rather than donate "just for Blaise".  It is more efficient for all to ensure a plentiful supply in American Red Cross than to donate just for our son. I have full faith in the current screening processes in blood banks these days and particularly at CHOP.  So- thank you for your donation but no need to make it just for Blaise- it is better to help everyone who needs a transfusion.

Anyway, what does this mean for our future?  This, I am not sure of. Blaise's behavior has been pretty good considering his counts were pretty low- as in, not lethargic related to anemia, etc.  One could assume that post this first cycle is when his immune system is at it's most robust, so to need a transfusion after one cycle did raise a red flag in my head-  will his counts drop quicker as his body begins to tire and really feel these compressed chemo intervals?  Only time will tell, but we are in the best place we can be in.

Speaking of that best place-
I think many of you can attest to this, I was one of those people who truly loved my job.  It was busy and time consuming, but you can only commit to a job- career- like that if its true love and something you believe in.  Well, pediatric oncology was that for me. And in the midst of all this, I have not had a lot of time to truly digest this piece of change, but this past weekend and week, I have thought more about this. I know that I will still have a career in CHOP as a nursing leader when I am ready- but the pivot away from oncology- one that I personally need to take, is heartbreaking. Not as heartbreaking as a 4 year old with cancer, but still, in those selfish pieces of my soul- I get mad. I get mad that my family is statistically unlucky and that my child whose mom is a pediatric oncology nurse gets to have cancer. And I get mad that something I was so good at, is no longer something I can do every day.  I miss my co-workers and friends. BUT... when something sucks- you need to look at the positive, and here it is:  I cannot imagine a better place for my child to be treated. My co-workers- people who I probably casually referred to as "I would trust you with my child" now actually are trusted with my child. And my small piece of this story- the career- actually helps support that case. Because I believe in that place, and all those people and now they will cure my son.


Until next time, enjoy some pictures!

Weekend

This blog seems to have taken on a life of itself.  I think Annie and I started this just as a way to keep people up to date. But in reality it has become very therapeutic to me.  Apparently it also has become something people check daily.  That is a testament to our families and friends.  The people in our lives care, and want to know how we are doing and how they can help.  So as we wrap up another weekend here's a post for you.

Yes the weekend.  Typically a time to relax and reflect on a week gone by and have a bit of anxiety about what lies ahead.  However, very quickly into this process weekends don't have the same meaning any more.  Remember, Blaise's treatment cycles are 2 weeks at a time.  So one week is just the halfway point.  Weekends are now like Wednesdays, Hump Day.  Wednesday is one of my favorite days.  It is during Wednesday that I can begin to think about what's ahead, what's new.  So now halfway through cycle 1 we begin to look forward.

This has been a bit of a trying weekend too.  Blaise has not been eating.  This is why we put the G Tube (button) in from the beginning.  However, we have not started using it for nutrition. Blaise is still a bit uneasy with us using it at all.  We did call the doctor Friday to see if we should be doing anything.  They comforted us and told us it is all normal.  They suggested we use the button to get some electrolytes into his system.  So we've been flushing Pedialyte a few times a day directly into his belly.  He does not mind the actual process, but he gets hung up during the connecting/disconnecting process.  This has made a huge difference, and actually has spurred a little appetite in Blaise.  So its been all positive.

Blaise felt good enough today that we ventured out into the freezing cold for breakfast,  We hit up the usual spot, JD McGillicuddy's on Brookline Blvd.  He did not eat much there, but it was a bit of typical routine.  That routine we're trying desperately to hang onto too.

As I rewind through the weekend, Saturday night saw Annie and I go out together.  We watched our #1 ranked Cat's beat St. John's at the Wells Fargo Center.  We did not watch much of the game though.  As we enjoyed our time together, and with friends.  It also wasn't the best game to watch.  But again, we had fun, and did things we typically do!

I also had the chance to go see Bruce Springsteen on Friday.  Something about the Boss in Philly that is magic.  I've been to many shows, not as many as some, and there is something about him in the City of Brotherly Love.  I sat in the stands way up in section 207 listening to the words, I heard them differently this time.  The words of the River, the struggles, the joy the success and failures hit me differently Friday night.  I am thankful Annie let me go and I am thankful for the company of friends that night.

The time together this weekend was great.  Lucy had her whole crew together.  Sunday morning brought the highlight for me.  At 6:30 we woke up to Lucy calling out for her mom, "Yoo-Hoo Annie!"

Lucy reading the church paper with Blaise's name in it!

Tomorrow marks our 1st visit to the clinic.  This is a routine visit to check labs and make sure he is on schedule.  Hopefully, we'll figure out a nutrition plan.  He looks real good, just a bit skinnier than usual.  So I am not thinking too much more will go on.  However, this would be a time where he could need a blood transfusion, or something else to keep him on schedule.  So everyone get out donate blood to ensure an adequate supply.  Like I said, its our first visit so I'll know more tomorrow.  The clinic is also a bit of uncharted water for Annie.

We're trying to talk to Blaise more about what's going on.  We're talking to him about his "tubes" and his port and the medicine.  That's why the G tube is now "the button."  Its interesting to watch him catch on.  Our Child Life Specialist gave us this stuffed animal that helps teach/show him about the different things, but he hates it.  Its really funny to watch him throw the duck to the other couch or push it on the ground.  So Chemo Duck is not doing much except providing us with comic relief when Blaise encounters it.

As this keeps going on I keep thinking about a show we use to watch as kids, Just the 10 of Us.  Honestly, I only remember 2 things about the show, the theme song and that the dad was a basketball coach.  I assume there was 10 people in the family, but I can't say for sure.  The theme song is called Doing it the Best I Can, and that's what we're doing now.  We don't have many answers, we just keep doing what we think is right and best of Blaise and Lucy.

Also, people have been asking about how to help us, and honestly we don't know specifics yet.  We are very appreciative of your offers and we know at some point we will need specific help.  That being said, my sister did set up a meal calendar.  I am not sure if it will work from the link.  You might need an access code.  If that's the case just email my sister Claire, cmdavis8@gmail.com.

Thanks again, and here some more shots of the dynamic duo in action this weekend!

9:00 Sunday night... No sleep in sight!

New Normal

Day 1

St. John Neumann
Okay, Andrew already blogged about this- but here to echo it-  weird right?  I just wanted to emphasize how oddly attached to a porcelain St. John Neumann statue Blaise was as a young toddler. Thanks to The Smith Family for giving us some family relics to lay on Blaise:

Also, thanks to the extended Murray Family for visiting the St. John Neumann Shrine and getting Blaise a personal medal relic of his own and a book for his Mom and Dad to read and pray with each day.  We know Blaise's special saint is looking out for him (apparent Patron Saint of Ewing's Sarcoma!)

The Tube
Well, first day home was OK.  Blaise got sick in the morning and I was so mad at myself for letting that happen. I should have given him ativan at 5 am- but that needs to go through his G Tube and he is still sensitive to that area- in time this apparatus will be invaluable- but he is still healing.  Let me tell all the "lay people" a little more about this G Tube- you may all want one for your toddler! One of the first things we discussed in our initial family meeting was nutrition- this is a focal point of all oncology treatment plans at CHOP, but especially for Blaise's population.  Different from just being treated with chemotherapy- Blaise will need "local control"- meaning, let's get rid of that part of his leg that woke up and decided to grow Ewing's Sarcoma.  Ewing's Sarcoma is sensitive to radiation, but CHOP prefers surgery based on his age and the expertise we have available (more to come on surgery in a few weeks).  The point is, Blaise will have chemo every other week for 12 weeks, surgery, then 16 weeks of every other week chemo-  incredibly intense even for the strongest human (which he is). So our oncologist recommended a feeding tube up front- so that once Blaise starts slipping on his own nutrition, we can support him with feeds over night. We anticipate that to be in the next few weeks and he is being followed closely by a nutritionist who specializes in pediatric oncology.

I love this tube for many reasons. But two of them I will share- we can pick which medications we give by mouth or via the G tube. Now, I really want Blaise to know how to take medication (#lifeskills) - but that was my Mom Mantra from 3 weeks ago- when I just didn't want my kid to be a jerk accepting chewable tylenol. Adding oral narcotics or anti-nausea medication, and Bactrim twice a day, twice a week adds a level of drama that most almost 4 year olds just don't need- so why should my kid be different?  So, I plug the extension tube in, give him the medication he needs, flush it, and its done. Second reason why this tube is awesome, is it is a "button" tube. Meaning low profile, meaning its under his shirt and you won't notice it and neither will he once it is fully healed. The above picture is a jazzy dressing we won't need in a few weeks and he can bathe, swim, and play like a normal kid with this. AND since rash guards and responsible sun protection are "in" as of late (smug parenting FTW) , we can count on total avoidance of other toddlers questioning the G Tube presence this summer in Sea Isle.

Blaise
So, how did he do yesterday?  Well- he was TIRED. He ate a little bit, and he ate a little more with each meal. I was happy about this.  He was uncomfortable in the middle of the day, right after a snack, so I gave him some ativan for nausea and he subsequently took a great nap and woke up for dinner and had half a PB & J!  It was so great for Andrew and I to watch him enjoy something he seriously loves- PB & J.

Otherwise, we pretty much had a low-key day. Andrew went to work, and I was with the kids. Blaise needs a lot of support, but luckily Lucy very much wants to be in on the action- so it's pretty easy to keep tabs on both of them. Lucy was very busy with me yesterday- I was telling Andrew I can't believe we can actually keep someone "on staff" to watch her because she really doesn't stop talking. But Andrew brought up a good point- she missed me. I really haven't seen her in two weeks and that gave me pause to actually cherish this little chatterbox who I think believes this is her assistive device, not Blaise's:

St. Matt's
Since he was 18 months, Blaise has gone to St. Matt's Daycare and Preschool. We love this school so much and they have become part of our family. Yesterday, Andrew went to pickup some of Blaise's things. He won't be able to go back until he is done treatment- well, that's not entirely true. We could maybe work in some half days if he is feeling up to it- but we aren't sure if that is realistic.  Either way, Blaise is used to being there 3 full days a week and that certainly won't be the case anymore.  For some reason, this sucks for me. I get so sad thinking about this part. He loves his school and his teachers and his little friends, and Blaise is a quiet thoughtful boy- so to take something like that away from him makes me want to scream. And to see how affected the school is by Blaise's absence and story, solidifies these emotions for me. We will plan some visits and do some video exchange with his classmates back and forth, and I am so grateful for their prayers, love and support.  Lucy's attendance at St. Matt's is also on hold indefinitely (she was supposed to start this week).  I think she will adapt quite nicely to constant time with Blaise and I, so I am less worried about that.

Weekend
In the spirit of normalcy- Andrew is going to see Bruce Springsteen tonight and we are considering going to the Villanova game tomorrow to see our dear friends (and have a little fun). We will go back to clinic on Monday for a check-up and I suspect a nutrition consult. Thank you to ALL  for reading our updates, helping with food, money, etc.  It's such a weird place to be in- and we truly appreciate each of you and will never be able to truly express how much you all mean to us.

Home...

We Made It, for now...

This picture brings me back to happy times on the Commons at The University of Scranton.  While not the Commons I spent many a day skipping class and hanging out on, it is still my school and a place I call home.  I am not 100% sure what this quote means.  I do know an expert on Robert Southwell's poetry, but I never thought to ask him.  A quick scroll through Wikipedia and I see the quote is a bit longer, and really highlights the fact that in love, is life. I guess that this quote hangs on the student center in Scranton because it shows that while most of the people there do not "live" in Scranton they love (their school, friends, studies) there and in essence they are living there.  Maybe DMilly from Philly can get the meaning of this for me!  

I may be wrong, I may be right.  I don't know.  One thing I do know is that I am glad we are all home.  Over the past few weeks we have certainly felt a lot of love from many different places.  We saw it every day in the hospital, in our texts messages, heard it on phone calls and everywhere in between,  However, I cannot begin to express the feeling of being back in our house, see Blaise in his bed and eating dinner together in our toy room (which is actually supposed to be a dining room).  This where I breathe, love and live.  Lucy and I have been home each night, but its not the same,the four of us where never really together, but now that Sheriff Woody has return, the whole Round Up Gang is back together.

Annie says I am the angry guy in the box...

The hope is that now we can return to normalcy.  Honestly, I am not sure when it will be normal again.  I think we are creating a new normal, one that travels West Chester Pike between Havertown and West Philly.  Our schedule will be packed; every Monday in the clinic for blood checks, PT twice a week, chemo every other week.  Somewhere in there we're going to throw in a surgery on Blaise's leg.  And this is the best case scenario.  We were told to expect some hospitals stays, to expect set-backs but to keep plowing through.  So say some prayers for Blaise, because he's the one plowing, we're just trying to keep him up right!

Chemo

Blaise finished his first cycle today.  1 down 13 to go.  When I was a sophomore in high school, Mr. Dugan would flash his fingers down every Friday for the number of weeks we just completed.  He would then flash his fingers up for the number of weeks left in school.  It was crazy scene from an old man that could barely move.  But it stuck with me.  Today I flashed one finger down (probably not the most appropriate finger) and 13 up.  It was ode to an old teacher and a reminder of how much more there is to go.

Blaise looked great today.  I showed up to the hospital (30 minutes late for class) expecting a bald, sick little boy.  Instead I saw Blaise mad at Nonie because she couldn't find his Toy Story guys.  He looked great, he had a good day.  He went to the art club and painted a picture frame.  He worked with Rebecca the Child Life Specialist and she made some great in roads with him, you could see it on his face!  She told us, "He's thinking this through, you can see the wheels turning."  Blaise also decided to do some of the work for his nurses and scan his medicine in and out.

The first doctor to come in on rounds explained that kids do better with chemo because they can't psych themselves out of it.  Basically, Blaise does not know what's going on, so he cannot sulk beforehand and make it worse.  I don't buy that yet, because our primary oncologist came by and was shocked at how good he looked.  He did have a few episodes of nausea, but all in all it was a fine day considering the drugs put into his body yesterday.

Class?

Yup, we had class today.  Two of them for that matter,  I was 30 minutes late for G-Tube Care class.  Ironically enough it was taught by our neighbor, who I did not know.   Annie and I learned how to care for the feeding tube in Blaise's belly.  Its a neat little thing anchor by a few stitches and a balloon.  They teased me in the end by saying in a few months I'll learn how to actually replace the tube.  I am not sure how that works, but I'm sure I'll follow up!

We also has "syringe to syringe transfer" class.  Blaise needs a shot 24-48 hours after each chemo treatment in order to boost his white blood cells.  We were trained on how to administer that shot at home.  I guess I am a nurse now, or a murse.  "Paging nurse Focker, nurse Gay Focker!"

Lucy

Lucy spent the day shopping with Aunt Suz and Aunt Aly.  She came home with tons of new clothes, but was really only interested in Blaise's stuff.  She also fell three times in a 20 minutes and cried each time like her head fell off.  She's fine, but nobody is happier Blaise is home than her.

St. John Neumann

In a really weird twist Annie just dropped some serious knowledge on me thanks to her friend Cara.  Cara's family visited the shrine of St. John Neumann and got us a book and a few other things.  For those of you that do know, I took the name John for Confirmation after my grandfather and the 4th bishop of Philadelphia.  My grandfather was a few years ahead of John Neumann in school, but they were friends.  Well Blaise as baby took a special liking to a little statue I have of him.

In this book, we learn that John Neumann's final miracle for sainthood was in 1963.  That year a boy from Philadelphia was diagnosed with osteomyelits and sent home.  This happened to Blaise!  After a few months of not healing, it was found that Ewing's Sarcoma and given 6 months to live.  His family visited the shrine, and after a few months the boy was found cured of the cancer.  It was deemed a medical explainable.  Welp, say your prayers to the 4th bishop of Philadelphia, founder of the first catholic school system  and also apparent healer of Ewing Sarcoma!

Happy Ash Wednesday!

Blaise did get Ashes, his Bieber haircut covers them up though...

  

I carry your heart

Hi All, Annie here.

 Blaise had a long night last night post his surgical procedures. I saw pain and fear in him, and it broke my heart every time he cried and his belly hurt and he just looked at me. All I could do was hug him and talk to him. It's hard and screwed up to watch a 4 (ish) year old go through this and you are in this spectator role. One thing Andrew and I decided to do was pack his pajamas from home and his play clothes from home. This morning I was so very glad I did this. After a long night I showered him and dressed him in his own clothes from home- and what a difference that made!

This morning, Andrew and I went to oncology home management class. It was a very surreal experience. This is a class that I teach parents, and now I was the parent being taught. This has been a deep struggle for me, to abandon the notion that I am an expert at pediatric oncology care. Although it is hard at times, I am grateful because there is such a risk in assuming you know it all- and as I expected, I learned new things in this class. And I learned them with my husband. I am so grateful that he is with me in this- he helps me focus on Blaise, and reminds me to take care of myself and Lucy at the same time.

Lucy.  Where do I begin?  Lucy and Blaise are opposites- she's tan, he's pale, she's loud he's quiet, she's defiant he is resigned...it's funny I always enjoyed how different my two kids were, but I am so thankful for it today. Blaise was sad today. It is clear that he understands a little of what is going on and what he does get he does not like- sure, new toys everywhere he turns, unlimited time with Mom and Dad, but- something is up.  This is where Lucy comes to the rescue.  We hear her down the hallway each day she comes- and she does her previously mentioned "role call"- she calls all of our names (and then her bottle). She is in your face- but he loves her so much and you see that he remembers a glimpse of normalcy when they briefly reunite. This is part of the reason I want to do most of our treatment outpatient- I want these two to have every second they can together, and I want her to yell at him and Blaise to hug her. We can do most of our treatment in the clinic, which means more nights like this.

So, we learned how to take Blaise home today. Then we took the first step into our new life- Blaise received his first doses of chemo. Surprisingly, uneventful. I am sitting at the desk in his room looking over my shoulder hoping he doesn't get sick-  an expected side effect. But, Blaise is sleeping. He seems good. My friend Bridget texted me earlier-"First day of chemo is one day closer to being cancer free..." My heart hurts thinking about this long road ahead, but we will be there for him, and we hope that this experience is a blurry memory for him, even though it has changed us forever.

When I was up with Blaise last night sitting with him telling him it was okay, I kept thinking about the poem by e.e. cummings:

i carry your heart with me(i carry it in

my heart)i am never without it(anywhere

i go you go,my dear;and whatever is done

by only me is your doing,my darling)

i fear no fate(for you are my fate,my sweet)i want

no world(for beautiful you are my world,my true)

and it’s you are whatever a moon has always meant

and whatever a sun will always sing is you

here is the deepest secret nobody knows

(here is the root of the root and the bud of the bud

and the sky of the sky of a tree called life;which grows

higher than soul can hope or mind can hide)

and this is the wonder that's keeping the stars apart

i carry your heart(i carry it in my heart)

Back to capitalized letters, I know I cannot take this on for Blaise, but I can carry him and all the 

tough stuff with me and we will never let him be alone, because we carry his heart (we carry it in our 

hearts).

Monday, Monday, Monday

Dad here, Andrew.  Today was crazy, lots to break down about that Super Bowl last night... Oh wait, wrong blog!

General Update
We arrived at CHOP at 8:30 for Blaise's pre-treatment surgeries; "the port," "G-tube" and a the fertility study test.
Yes you read that last test correct we are talking about fertility in a 3 year and 51 week old child.  It makes perfect sense, maybe not yet.  The research shows that boys that go through this type of treatment have the potential to fertility issues later in life.  The study focuses on teenage boys (post-pubertal I think), and the research has just shifted to younger boys (pre-pubertal) because much less is known about the treatments effect on them.  But forget the science, the religion, the political views for a minute.  Blaise is doing a fertility study because in the future he will reach the age where he could potentially want/need to be fertile.  We signed him up for this study because Blaise is going to have a future.  We're not just focused on the now, we're "taking the long view" as Oscar Romero would say.  But i don't think he meant it like this.  Sure this sucks right now, and as his dad my heart breaks every second I see him in that hosptal, but my heart will be whole again when he is fine in a few short months.  And I guess then my heart will break again with each stage of his life, as it already has for these few short years.  But I digress...
The procedures went rather smoothly from all accounts.  The port, where his chemotherapy will be administered, was placed in his upper right chest.  The doctor could not attach it to his exterior jugular vein (I guess that's a thing) even though he said he could "Get a garden hose into a piece of hair."  But he placed it on the interior jugular vein, which actually makes for less travel for the medicine to get into his blood stream.  The G-tube was placed on his lower left belly.  Yes, belly is the medical term!  The G-tube will be used for supplemental feedings and potentially to administer some meds at home.  We put this in now so that we would not need to fight him down the road to eat and he can maintain proper nutrition.  Blaise's doctor said with the tube, eating becomes a hobby, funny I already thought it was.
Blaise was struggling today, no lie.  He was in pain, but then again who wouldn't be?  We're set for tomorrow, and the start of chemo!

Road Map
After the surgeries we made a trip to 3 South.  So Blaise and I got to see where mom spends all her time when she's not home with us!  And we met with the doctor's for our "Family Planning Meeting."  This was cool, it really put things in perspective for me, a total outsider.  Basically treatment is broken down into 14 cycles, with a femur surgery thrown in the middle.  Each cycle will last about 2 weeks, although nobody holds to that schedule!  The odd cycles give 3 drugs over 2 days and the even cycles give 2 drugs over 5 days,  After the drugs are given, he rests, waits and then the doctors see how he responds.  He'll have nausea, lose weight and yes he will lose his hair.  There will also be things happening we cannot see.  However, I was reassured that during this next couple of months Blaise will be himself.  Sure the medicine will take its toll, but he'll have days where he is the same wonderful kid we all know and love, just without hair.
Honestly, this is the part I am dreading the most.   As his dad, I cannot do anything to help his pain, or make him better.  And these drugs are causing pain, but making him better.  How do you explain this to a 4 year old?  We are just there to be with him.  Which is not comforting to me, but I hope its comforting to him!.

Thank You
Today was tough, but very comforting.  This is the awkward part and the uncharted waters.  But thank you to everyone.  Thank you for helping with Lucy, for making dinners, cleaning the house or donating.  Thank you for texts, the calls the prayers the masses and the mail.  We have been blessed with great families and many good friends.  We can't thank you enough from the people in Havertown/Broomall and across the globe, our friends from Villa and the Prep or Villanova and Scranton, your support has been truly been amazing.  One friend is having a  mass said for Blaise, and I cannot thank him enough, and shared the message the priests sent him and its just stuck with me all day.  He said, " Today's Gospel: everyone was trying to touch the hem of Jesus' garment! I'll try to reach it for this child."  I guess that's something we're all trying to do, just reach the hem of Jesus and know the best will come of it.  Please know that where ever you are, and however we are connected we appreciate you and our words alone cannot express our sincere thanks, but THANK YOU TO INFINITY AND BEYOND!

Even though he's not feeling great, Blaise is still showing everyone who's the #1 team in the country!
And also, Lucy is still holding strong.  Every morning she wakes up and does a roll call: Mommy, Daddy, Blaisey and Bots (her bottle).

Thanks and keep Blaise in your thoughts and prayers!