A REALLY, REALLY HAPPY FATHER'S DAY!!!

Normally, the phrase "increases your chance of long-term survival" is not one you get excited to hear. I mean who really wants to discuss "chances" of survival? However, these words were music to my ears this week as they came from my doctor.  Why the increase?  Well, I am happy to say that my post radiation MRI and CT scan showed that my tumor is all but gone! Yep, that's right…we have good news coming to you from the Bond family! Feels like a long time, I know. And I am sure that I would not have gotten such "excellent" results (more doctor’s words) if it was not for all of the amazing support (mental and physical) love, prayers and  positive energy that so, so many people have been sending to my family. You all have bolstered my spirits through my journey so far. I am now half way through my treatment plan and feel like I can see that light at the end of tunnel (and no, it's not a train!). So thank you all! Thank you, thank you, thank you! Next we just have to get Elisa on the same good news wagon.

Since her release from the hospital after her seizures, Elisa has been battling the effects of the new medications.  She has been suffering from both physical and emotional side effects, which is why she still hasn’t been posting on the blog.  I will let her share as she sees fit at a later date.  I can tell you that she has been having difficulty with her blood counts (both red and white) and may be having a transfusion this coming week if they have not come up enough or have dropped further.  One of the big problems with the low counts, other than being winded from something as simple as scratching your head and being very vulnerable to infection, is that it messes with the chemotherapy. They can't keep her on a regular treatment schedule. The week before Father’s Day they had to skip it all together.   Then Elisa had to give herself injections into her belly for three days with a medication to stimulate her white blood count. Yep, she is pretty badass.  I would have fainted doing it. There was a little silver lining though. Since she didn't have chemo she actually okay over the weekend and so did I. So we spent the weekend at her fathers house where there is a backyard that we could play with Sadie in and a pool near by that we could swim in.  We did have to lather on the 100 SPF sunblock because we’re photosensitive from the chemo but it’s a small price to pay.  

We had one of the best couple of days that we have had in a long, long time.  Sadie went in the pool every day and took to it like a fish. She was not afraid of swimming at all, and at night was still chanting "kicking, kicking" as she lay on her back and wildly waved her feet in the air. We had wonderful tea parties in the backyard with her toy tea set that I gave her that weekend.  I have been holding onto it for about a year. It was really amazing to watch her spend hours setting up the teacups and pouring imaginary tea for everyone. She even made sure we had sugar and cream! It is one of her favorite things to play with now, even at 6 AM! She loved being chased around the yard and taking walks with Grandpa who made us yummy big dinners each night.  Sadie starting calling him “Grandpa Pasta.”
 

It was really great to get away and we all felt very refreshed from it.  It didn't hurt that Sadie even slept 11 hours one night! It is these times with my girls that make going through treatment seem like just a minor irritation if it means I will get more of them. I am only sorry there was not more of the family there to see and have all the fun. We hope we get to spend some more weekends like this with the rest of you guys really soon. We love and miss you all!

Unfortunately, Elisa’s counts were still low this week so they decided to give her a partial dose of her chemotherapy.  She has been really drained and then Sadie got an ear infection with fever and a terrible cough.  I have also been fighting a cold but am not complaining because I am still flying high from my good news!  I hope you enjoy two of my favorite pictures from our Father's Day weekend.

Shake, Rattle and Roll With It!

One of the most difficult things that I have found about dealing with all that is happening to our family (and I mean the cancer) is the frustration of having to watch Elisa go through it. The physical side effects of the drugs are difficult enough to deal with never mind the mental side effects that the diagnosis and exhaustion bring with them.

So the last thing that we were expecting (or needed) was another diagnosis of another disorder. And one would think that the odds would be on our side at this point.  But clearly someone thinks that we are really way too strong and that someone is looking to see how much we can really deal with. 'Cause guess what? Wait for it... Elisa has epilepsy!  "What the fuck?" you say! Well, I say it too. In fact, even the doctors say it. It is always fun to see doctors break their clinical composure.  Sorry that it is me writing again, but I think you may have guessed by now that Elisa is dealing with a lot and is not up to writing about it just yet. So you are stuck with me. So here is what has happened.

About two and a half weeks ago Elisa and I were enjoying a calm moment together sitting on the couch towards the end of the day.  I was in my last week of radiation treatment so had spent the majority of the day sleeping. We had been chatting about the Oprah episode we had just watched and Elisa got up to go to the bathroom. After about a minute, I heard the bathroom door slam and the trash can rattle. I called out to Elisa but there was no answer. I called again loudly and still nothing so I jumped up and rushed to the bathroom (very happy to live in a small apartment at that moment so that I didn't have more than 20 feet to travel). I found Elisa on the bathroom floor having a seizure. I still find it difficult not to start crying when I recall that moment. It is one of the most terrifying moments of my life. Luckily, I had read up on what to do just days before. Unfortunately, there is not a lot that one can do. So I cradled her head in my lap - making sure that she was turned on her side and held her. I called 911 and her mother.  Eileen was out buying some groceries for us and was near by. The seizure lasted for what seemed like an eternity, but in reality was about 3-4 minutes. When she started to come out of it she was very disoriented and was trying to stand up with great determination. So I carried her to the bed to lie down and tried to explain that she had had a seizure. This was very confusing to her.  She thought that I was confused and was talking about the seizure she had had in April. Elisa's mom arrived and then the paramedics were on the scene as well. So, again my wife was off to the hospital. They really should have a punch card for frequent visitors.  I think we would already be getting our free hospital stay by now if they did! And once again I was stuck not being able to be with her because my stupid cancer.

A few hours after being at the hospital, Elisa had a second seizure. This time she severely bit her tongue. The worst damage to a tongue her neurologist has ever seen. It still has the imprint of her teeth in it today. I am going to truncate the story of the hospital stay.  She was in the hospital for four days and I only got to visit her once briefly on my way home from my final radiation treatment so everything else is secondhand info. Elisa was under observation (via 24-EEG and 24-hour video monitoring) the whole time. The final out come is that she has Juvenile Primary Generalized Epilepsy. Juvenile refers to the age of onset.  Elisa had one seizure at 9 years old. The primary part means that she was born with it. Generalized refers to the fact the seizures do not originate from one spot in the brain; they fire from all over the brain. 

So why the flare up now?  Well, they believe that due to the chemotherapy combined with sleep deprivation, exhaustion, stress and perhaps some hormonal influences as well as the other medication she was on and off of that her threshold for seizures has been greatly reduced. So now she is in the process of having to slowly incorporate news drugs (as some of you may already know she was on anti-seizure meds due to the seizure she had in April - they have doubled the dosage but are gradually switching her to a new drug to alleviate the side effects that are rare but, of course, she is experiencing).  It also means new restrictions in her life until we are sure the new medications are working to control her epilepsy. Some of the restrictions include no baths for six months, no driving for six months, no swimming alone for six months, etc. It is a lot to add on to what she was already coping with. But may I just take a moment to say how amazing my wife is and how proud I am of her courage and in awe of her strength I am. She is as funny as ever! As feisty as ever! And as caring and giving as ever.  Of course, all this is not easy to deal with, and, of course, we curse about it and cry about it. But she handles it with such grace that most people would never know the burden she bears. She is a truly amazing woman.  Our sixth year wedding anniversary is this Sunday, but she has showed me a lifetime of courage and strength and laughter!

I would also like to mention and to thank a few more amazing people.  Elisa’s mom, Eileen, of course, for not leaving her side at the hospital for almost 2 days. Her incredible bosses Frank and Aaron who showed up at the emergency room within an hour and ran relays so that one of them could keep an eye on Elisa and grab Eileen who was trying to get cell service in front of the hospital and brought food to Eileen and Donna at midnight.  Her father, Al, and stepmother Lynda and "Aunts" Donna and Bonnie who also helped manage the emergency room nightmare.  Her wonderful friend Melanie for having her babysitter watch her three kids so she could sleep in a chair over night at the hospital with her. The amazing Betsy (the incredible photographer) who flew in to stay for four days - the first two being in the hospital sleeping on a skinny fold up mattress with all her luggage in tow since she took a cab straight from the airport. Maia, Lara and Rachelle for taking care of Sadie for those four days since I was too weak to do it. Our dear friend and neighbor Amanda for checking in on me everyday. Thank you also to Lorin who came to stay with me the first night, busted foot and all. Also, to all of the wonderful army of friends that called and sent messages and prayed and sent healing energy and good thoughts to help Elisa and myself get through those tough days. It seems the darker the day, the more light I see there is in our lives. Thank you all! We love you.

I have also added some new pictures of our darling Sadie to the slideshow. She is just such a remarkable little girl. She uses "please" and "thank you" and is even speaking short sentences in 3 languages! There are so many wonderful stories to share about her, but I have run out of steam.  The pictures will have to do for now. I will try to get some of the stories about her up here soon.

Break Out the Kleenex

This was supposed to have been posted back in April.

My dear friend and fabulous photographer Betsy Prieto had the foresight to think I might want some family photos before my hair fell out and she knew there was a short window in which we could make that happen.  Between returning home from a family vacation and her only sister's destination wedding, Betsy hopped on a plane to New York for 3 days.  All the stars aligned that week because my two other Vandy friends, Andrea Accardi and Laura Gentles, were going to be visiting as well.  Andrea had randomly chosen her dates first, then Laura's OB said this would be her last chance to travel as she was VERY pregnant and Betsy only had those few days between the family vacation and the wedding to make it happen.   As luck would have it,  it also turned out to the be the week for the taping of the pre-interview for the Today Show.

There was a bit of a slumber party feel to our home for those few days and I loved every second of it.  I have to say, I am one of those people who has fantasies of communal living.  I'm not so hot on the BIG LOVE  communal living...I want my own husband.  I do, however, imagine a Kennedy-esque compound where all my family and friends have their own little house on a huge piece of land and there is a big barn where we gather for social events.  Okay...now it's sounding a bit like cult.  I just want to be close to all the people I love.  Is that so much to ask for?

Anyway, back to the photos and my hair.  On precisely the morning of the taping of the pre-interview, I hopped in the shower and as I started to shampoo my hair it began to fall out in chunks.  My hair was rather long at the time and so as it broke free my scalp and headed south it stuck to my back.  I looked like the swamp thing.  I swore I didn't care about losing my hair but here was the moment and I began to cry.  I shouted to Betsy to grab her camera.  I don't know why I wanted to document this moment but I felt I had to be honest with myself.  This was going to be harder than I had anticipated.  She shot me coming out of the shower and combing my hair as I normally would but this time the wide tooth comb harvested innumerable locks of long wet hair.  "Why, today, of all days, do I have to deal with this?  I just want to look presentable for this interview.  Motherfucker!"

Laura came into the bathroom as I was intermittently holding tears back and letting them flow.  "I know it's tough," she said, "but have your moment and let's move on.  It's going to be a busy day."  I fucking love that girl.   It's exactly what I wanted/needed to hear.  I had said that losing my hair was not going to be a big deal for me because I had always fantasized about shaving it off at least once in my life anyway.  Okay...so it was bigger deal than I thought but we had shit to do and not a lot of time. I got on with getting ready for the day which included blowing out my hair.  It continued to be a stressful process because not only were many strands falling out but the ones that were holding on were fraying.  I did not see a good hair day in my immediate future.  Of course, there was a giant white hair that Laura noticed and tried to pluck but, wouldn't you know, that was the one was making his last stand at the Alamo and wouldn't budge. Seriously, God,  you have a sick sense of humor.

I did manage to blow it out and look "myself" that day and for the interview.  But we hadn't had enough time or energy to take any photos.  The next day Betsy insisted we take some family photos before she took me to my oncology appointment and chemo session.  Sadie was about to be picked up for day care so we had 20 minutes to make some family memories.  Even with a slight drizzle, she made it fun.

Somehow we made it home from chemo with a little time to spare before Betsy had to head to the airport.  My hair had been falling out for two days and was really driving me crazy so she suggested we just go for it.  I called my mom and cousin Lara to come over to create a bit of celebratory feeling.  We put music on it and my mom started putting my hair in multiple pony tails so I could donate the hair to Locks of Love.  The rest is best told in the pictures Betsy captured.  See the link below.  And have Kleenex ready, the soundtrack can really push you over the edge.  Thank you, Bets.  I love you!!!

Nathan & Elisa Bond from Betsy Marie Photography on Vimeo.

Still Hanging In

This is probably a poor choice of words, but I'm still alive.  I know I haven't written in a very long time but in my defense I do have cancer.

It kind of sucks that I haven't been keeping up with posting on the blog because I feel like I need to recap the last 6 weeks from my perspective but honestly I can't.  I can't even remember what I had for breakfast today.  The chemo brain (a.k.a.-lack of short term memory) has really kicked in.  I feel generally stupid a lot of the time.  I think I can say that, right?  I mean there isn't a lobby for stupid people out there, is there?  If there is then they aren't that stupid because they've organized themselves and are probably trying to become a protected class.  Frankly, stupid people should be a protected class and we should be the ones protected from them.  But I digress.

If I sound a little mean today it's because I haven't been feeling well all weekend.  Why?  Um, let me see...oh yes...I HAVE CANCER!!!

I must say I am so over it.  And I'm even more over Nathan's cancer.  His cancer is way worse than mine.  This chemo/radiation regimen he is on currently is horrendous.  He leaves every morning at 6:30 am to go into the city, has his radiation treatment at 7:20 for 20 minutes and then he's back by 8:30.  He then spends the rest of the day in bed or running to the bathroom.  I have never seen him so wiped out.  He can literally sleep for hours and has no energy to do anything other than watch multiple seasons of 24 or play RISK on his iPhone.  I know, I know.  We missed that series when it was on in real time but thanks to cancer we are filling in our pop culture knowledge gap on all things related to Jack Bauer.  

While I am discussing his chemo/radiation regimen, I just want to thank the many volunteers who are waking up with roosters to chauffer Nathan to and fro.  We know it's not the easiest way to start your day so thank you again.

I'd like to send a belated thank you to Nadia Ackerman and all the musicians who I heard put on an amazing concert.  I have to say I was truly bummed to have missed it.  I mean a concert with all our favorite songs.  Who wouldn't want to go to that? Stupid seizure.  The only good part about being in the hospital was that I got two full nights of uninterrupted sleep.  That hasn't happened in the last two years.  I might as well have been at Canyon Ranch. 

A big thanks to Todd Lambrix and the many artists who donated their work to the art benefit last week.  It was such a brilliant idea and friends were texting us all evening about what piece they were hoping to snag.

LIVESTRONG also donated the proceeds from their booth at the NYC 5 Boro Bike Tour to us.  In fact, there are many events being held in our honor and for our benefit.  We can't thank you all enough not only for your generosity but also for your good wishes, time, effort and prayers. 

I'm going to sign off now because if I write anymore I am going to over think it, delete it or keep it as a draft and it will be another week before I write again.

xoxo, Gossip Girl...oh no...did I just admit to that?!

Blog Interrupted

Writers note: This entry was written in two parts – about a week between them. So it has a major jump half way through.


So I am sure that you are all missing wife’s witty prose by now, as am I. This cold that she has had for over two weeks now just won't seem to go away. It is one of the drawbacks of cancer - suppressed immune system.  Her mother has also been very sick this whole time. This has added a new challenge as Eileen was one of regular babysitters for Sadie, but also such a major emotional support for Elisa (well for anyone around her, including me).
   So you are all stuck with me for a bit longer. As I think back over the couple of weeks I am not really even sure where to start. Time, when you have cancer seems very different. A week seems more like a month, a day - a week. Not in productivity however (we can't seem to get even the smallest things checked off our to do list), it's more in exhaustion.  At the same time the days are slipping by quickly. To quote David Eggers "I am losing days like pens in a couch". Elisa and I were talking about this the other night. When we first got our diagnoses we both had this thought that there would be lots of long boring days of laying around (feeling like shit of course), surfing through bad television and reading books. Let me tell you that the cancer vacation package you see advertised on TV is a scam!  We are having a hard time even making room for naps (our doctors are not terribly excited about this by the way).
   So I guess let me start with some good news! Yes, that is right: GOOD NEWS! I have finished my first round of chemotherapy and had my MRI to check my progress..... My tumor has shrunk! Shrunk enough to make my oncologist smile!!! I even thought I might get to skip ahead in my treatment, as if I had aced an advanced placement test for a college credit. No dice. This does however mean that the tumor has been very responsive to the chemotherapy, and will most likely respond well to the next stage of treatment too. So now I have been approved to move onto radiation and chemo. I start Monday. I will have radiation five days a week for five and a half weeks and have a continual infusion of chemotherapy the whole time as well. I feel really good to have finished the first stage of the treatment. I feel like progress is being made. I have to admit here that I am a bit nervous about this next stage. Having the bottle of chemo attached to me for the two day infusion was not particularly fun so I can only imagine what it is going to be like having it hooked in for almost six weeks. Since the needle that infuses the chemo is only held in place by a bandage, it cannot get wet. This means no showers folks. They now sell these patches you can place over the port area to prevent water from reaching the dressing that might splash up on it, but you still are not allowed to have water directly hit the area even with the aqua guard. This is particularly annoying for me, as Elisa will attest too; I love to stand in the shower. It is one of the more relaxing times of the day for me. So it looks like weeks of sponge baths are ahead. Among the many lessons that I am taking away from having cancer: a new appreciation for indoor pluming.

Here is that major jump in time!

So cancer does not seem to give a fuck about your plans. The prior part of the post was written last weekend, and a lot has happened since that made finishing it impossible. So I am just going to make the transition without a CNN worthy segue.
On Monday morning I was in the shower, taking my last regular shower I was talking about earlier and Elisa was mediating in the bedroom. When I got out, I heard Elisa call out to me faintly. I could tell by her voice something was wrong. I ran to the bedroom to find her lying down, crying on the bed. There was blood on the pillow under her head. She was confused and wasn't able to tell me what was happening except that her tongue hurt and that she was nauseous. She opened her mouth for me and her tongue was incredibly swollen and bleeding from a couple of different spots. Then I noticed the large swollen red area on her head. I don't think that there have been many times in my life when I have been more scared or felt as helpless. She told me she didn't know how she got on the bed and that when she woke up she was very confused about why she felt bad and was trying to figure out if she was remembering correctly that she had cancer. I called her oncologist and got us ready to go to the hospital. Skipping over some details, two hours later she was admitted to the ER. Her mother was with us now and so we waited as they took blood and started to run tests. I had to leave shortly after they admitted her to go to get my first round of chemo and radiation. I was extremely frustrated and saddened that had to leave her side to go to my treatment. Stupid fucking tumor.
My plan was to come right back after my treatment was finished. Again, cancer does give a fuck about your plans. When they ran my blood work (they always do this before chemo) my white blood count was very low, almost to low to start, but they gave me my seven-day infusion bottle. However they told me that I could not risk going back to the hospital to see Elisa. My heart sank. I was not even going to be able to help comfort my wife. I didn't know I could feel even more helpless than I did when I found her that morning. This is where I would write a string of curses to express my frustration, but you get the idea. So I was left to go home and wait for news about her. Sadie was going to home from daycare soon. The news was scary. She had had a seizure.  They wanted to run an MRI to see if there was spread of the cancer to the brain and if that is what had caused it. They were also going to admit her to the hospital overnight. Her father and mother were there with her, so I know she was in good hands as far a support. So now it was the waiting that was driving me crazy. Luckily it is impossible to be around Sadie and not feel joy, so my spirits were lifted when she came home.  Our dear friend Tanya came over to stay the night and help out with Sadie. They would not get the results form the MRI until the next day. Elisa's tongue was too swollen to talk, so we texted each other our goodnights.
In the middle of the night Sadie came down with a fever, luckily not too high, but enough to make her miserable and so I brought her I to bed with me to sleep. She tossed all night. So there would be no daycare the next day. I had radiation again in the afternoon so cousin (and saint) Rachelle took the day of from work and watched Sadie. By late morning the MRI results came back clear! Huge sigh of relief! However during the night her white blood cell count dropped to a critical level. They moved her to a private room and all visitors had to wear gowns, gloves and face masks due to the risk of her catching anything from them. They gave her some meds to bring her levels back up but she would have to stay another night in the hospital.
Meanwhile the doctors told me I was still not allowed to go see her and that I should not be around Sadie either until she was better. Really?!!! WTF! Now I can't help either of my girls. I need a stronger word for “frustrated” here! So Sadie stayed with Rachelle and her grandmother that night.
Sadie slept well and had no more fever that night, she could come home the next night. Elisa's white blood count was back up and she would be home that night too. Big smile! (We are up to Wednesday night now). She would have to go in for her chemo the next day. Of course they would have to check all her levels to make sure she was in good enough shape to handle the drugs first. So Thursday when they tested her blood they found that her red blood cell count is critically low. They only gave her one of the two chemo drugs. They are going to have to give her a blood infusion on Friday to get her levels back up. Again, WTF! Also they have started her on anti seizure meds and is not allowed to drive or be alone in the house when she takes a bath for three months. So that is where we are now. I am on my way for my fifth round of radiation and to have my white blood count checked again and Elisa is sitting through a six-hour blood infusion. It has been a long week. Here's hoping next week is a little less interesting.

STOP! Potty Time!

Okay there is a blog post in my drafts box from last night when I was up late night for no good reason but I haven't finished it yet.  In the meantime, we have breaking news on the Sadie Abigail front.  After about 20 minutes of sitting on the potty (the training one) success!  Sadie made an actual pee pee in the potty.  She was thrilled as am I.  Her cousin, Fiona, and bestie, Alice, have been making great strides on the potty training front this week.  Thank goodness for some positive peer pressure.

Sadie Time

I am only going to give a brief summery of what has been happening to the two of us, as I will be letting Elisa fill in a lot of the details. I am doing this for three reasons. First, (my own selfish reason), because I love reading her writing. It always makes me feel better. Secondly, a lot of what has been happening has to do with her and she is the best person to share those thoughts and feelings. And lastly, but by no means least, I want to keep ya’ll up to date on the most important part of our lives – Sadie.

So quickly us….

It has been a fairly crummy week health wise. The Sunday before last I had to go to the Urgent care center due to having a fever (they make you go if you have a fever over 100.4  -mine was 101.3). Of course this happens in the middle of the night. So off to the hospital I went at 11:45 pm. Thankfully, our good friend Caroline was staying with us and was able to take me to the hospital. Our hope was that Elisa would be able to get some sleep as well as Sadie. This has been one of the tough spots with both of us having cancer. We have had to decide that it is healthier for us if we try to not go to each other’s appointments. Otherwise, we would never get any rest. But, of course, our hearts are not so fond of this idea. Anyway, Elisa of course didn’t sleep because she was worried. Finally I received the all clear at 4:30am -just one of those fevers that can’t be figured out. This is what led to the onset of the soar throat and cold that just won’t leave Elisa alone. She has been coughing pretty much none stop for the past week. Otherwise, things have been pretty much run of the mill cancer patient around here. Shaving heads, forcing food down, not sleeping, getting chemo, you know, the usual suspects. But again, Elisa will be putting her wonderful humor to all this once she kicks this cold.

Warning: Father gushing over child ahead!

So on to the amazing Sadie. The Sadie that clearly has been working on her bachelors of engineering while at daycare. One night last week (from her crib) she used her crazy strong, long arms to grab items from a near by table to build a rudimentary ladder and climbed out of her crib! That is right, Houdini is back! So we have had to change her crib to a “big girl” bed. She loves this! However I can’t help but think that this is just step one in some grand master plan she has been plotting. Time to hide those keys to the car! Good thing she is still a couple of weeks away from being able to turn the doorknobs! She is also starting to say every word that she hears. For those of you that live in New York, heck, even if you have driven through New York, you will know that this means your kid is going to hear some interesting (colorful) words. Like (as Sadie says) “’Oly Shh”.  Good thing she can’t read this blog yet! She is also starting to string those words together. My favorite paring so far, of course, has to be “Daddy do”. Yesterday morning she woke up and said, “Where are you Bunny”, - Bunny being her new stuffed animal companion (poor monkey…his heart broken). Ahh, the first in a long line of heart broken men I fear.

She is also quickly developing a strong sense of self. She is playing with her toys on her own for longer periods of time and carrying on little conversations too. I can’t wait until they actually contain words I can understand so I can listen in on her amazing thoughts!

She also knows what she does not want, and knows how to tell you. Last night Elisa and I were giving her a bath. Typically she loves this and even helps to wash herself. However, last night she was not into having her hair washed. When I started to lather the shampoo she absent-mindedly began to say “No”, but continued to play without looking up. As soon as she realized that this was not deterring me from washing her hair, she looked up, furrowed her eyebrows, pursed her lips, stared me square in the eye, and with perfect enunciation, yelled “NO!” Sorry Sadie, we didn’t mean to gloss over your wishes, but Elisa and I busted out laughing. It was the cutest face anyone has ever yelled at me with!

It is so amazing to watch her make connections between things too. When we first cut Elisa’s hair, we wanted to make sure she was there to watch so that it wouldn’t be a shock to her. It may have helped that my hair is already short, because she didn’t even seem to notice. We put Elisa’s hair into several ponytails so that they would stay long enough to be able to donate them later to Locks of Love. We laid them out for the night on the dinning room table to be packed up later. The next day we looked at the photographs that our dear friend Betsy had taken of the haircutting event. She had posted them online, so Elisa, her mom, Eileen, Sadie and I were all sitting at the table looking the pictures on our laptop. Betsy had created a beautiful slide show and put music to it, so it was very moving to see the images, and Elisa started to cry a little (me too). Sadie looked over at her (she was sitting between us in Eileen’s lap) and saw that she was crying. She reached out and placed her hand on Elisa’s shoulder in what could only be interpreted as a consoling manner. This, of course, did not help me stop crying. Next she points to the ponytails that are lying just beyond the computer and says “Mama?” 

She leans forward and tries to grab one. So I hand her one to hold. She lifts it up and says “Mama” again as she tries to put it back on Elisa’s head (the right direction I might proudly point out). If I ever thought that she was not aware of what was going on around the house these days, that thought is gone. That moment, with its mix of sadness, astonishment, pride and joy will be one that I hang on to for a long time. It makes me happy that my little girl has such a sensitive intuition, and yet sad that she is having to feel all these different, and sometimes heavy emotions in our home. It inspires me in a big way too. It inspires me to overcome the little bumps that we face each week. I see my wife’s strength and love in her, and this gives me strength. So thank you Sadie. You make your Daddy stronger, and very proud.

I also wanted to say thank you again to our family and friends: Matt, who flew over from San Francisco, Kristen who flew in from Dallas, Caroline who flew in from Oregon, Dala who flew up from North Carolina, Aunt Vikii who flew in from St. Maarten, and ‘Uelita and Miana who are always filling in the gaps and help to take care of us. We love you guys! You are all so incredible kind and loving… and great caregivers! We miss you already.