Sorry for the long delay will be trying to catch everybody up with how Isabel is doing. thanks for your patience.
Wednesday, February 1, 2012
Thursday, January 5, 2012
Isabel Warrior Princess Update: 2012 Year of the WP
Greetings and salutations,
I took a bit of
a break from writing about Isabel. Figured the holidays were a good
time to just rest and regroup. Although its a great way to vent,
update, explain & share. It can take a toll on you rehashing some
of the more painful things that have transpired. Its great to chronicle
the weeks so that when she eventually goes into remission, we can look
back and have a timeline of sorts. But actually trying to sit down and
write it is a different story. I've had a couple times where i tried to
sit down and write updates. But honestly before Christmas all I was
concerned with or focused on was her getting out by the 24th. Although
Ivey had made a great point, that we could always do another "Christmas
dinner". It
wouldn't have been the same in my eyes. It took me some time to really
stop stressing about what day she went home and focus on just staying
positive. You have to always remind yourself, with chemo their are no
set days. Each day will bring some twist or something unexpected. Even
if its just that she has a day with no issues. To hear me say that
just her playing like a regular kid is a great day, still makes me sad.
But than she says something silly or makes a funny face, and all that
sadness melts away. She has been so strong through out this process.
Time has flown by since we are going on 14 weeks, since her first
hospital admission. So much has gone on.................but it still
feels like nothing has happened. Time is figuratively standing still.
Even when I'm smiling, laughing, trying to do normal things, I can never
shake what she is going through out my mind.
I would go back and retell each week,
describe how each day went. But honestly it gets harder and harder to
want to write so much about it. Although we are getting closer and
closer with each passing day that she will be in remission this year.
That in itself doesn't give you absolute reassurance that you can
exhale. Each bit of news we get has remained positive, but the unquiet
mind always has to remind you worse case scenario. One thing you can't
control is just the day to day stuff that can makes you just get stuck
in thought. A song, a commercial, a tv show, a conversation with
somebody, something you see driving, shoot even certain things in the
grocery store. But than I spend the day with her, and am in awe of how
she is so much like herself. She is the hyper smart awesome pretty
silly goofy character she always has been. Its like she has matured a
year in these
last 3 months. I guess being thrust into this situation at any age
will mature you quickly, at this rate she will be 10 by the time she
goes into remission at the age of 5 lol.
So I
don't want to sound all doom and gloom. She is really doing quite
spectacular. She is currently undergoing her sixth round of chemo. Her
last round the 5th round was by far her longest and one of the most
difficult ones yet. I still don't try and recall each day. What I do
think about is the truly positive things that happened during those
almost 3 weeks. She has the hospital staff in love with her. They all
know her by her new name Warrior Princess. She has stayed receiving
support, prayers, positive thought, gifts & charity. Isabel had me
dealing with some bent up issues, I had kept locked up that I didn't
want to think about. She is really learning about her inner strength,
she
seems to be gaining more confidence through out this process. Isabel
has helped inspire different people that she is around or has heard her
story. She was overwhelming blessed for Christmas, between all her
family & friends she got so many presents. She has actually decided
to donate all her old toys, since she got so many new ones. She wants
to give them to the kids hospital.
And the biggest surprise........................ISABEL
MARIE SANTIESTEBAN...........WARRIOR PRINCESS..............HAS BEEN
APPROVED FOR - MAKE A WISH -!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
We actually find out about her being approved not just nominated right before she got released on the 21th
of December. You can't ask for a better thing to find out right before
his discharge & right before
Christmas. Isabel is definitely a blessed child. She is loved by so
so many, I think that is why her inner glow is so bright. Its a
reflection of the love around her.
So
where we stand today is Isabel is currently @Children's Hospital. She
was admitted 12/30/11. Her stay should be about 14-18 days. So if
their are no complications she will be out of the hospital Mid-January.
After she is discharged about a week later she will get her follow up
CT & Pet Scan. So by months end we will have a clearer picture of
her progress. Anxious to say the least, but one step closer to knowing
what the next step on the road map to remission is.
I will try and do more frequent updates now the holidays have passed. I sit here again at 4
am..........the quiet time, currently listening to
Ella Fitzgerald & Louie Armstrong. Such soothing music has me calmed down enough to finish writing this update.
Ella Fitzgerald & Louie Armstrong. Such soothing music has me calmed down enough to finish writing this update.
Remember you can see all the previous updates from the beginning of her diagnosis on the blog we started to tell her story.
Dueces,
Father of the Warrior PrincessSunday, December 18, 2011
There is no greater serenity in the middle of the night to look over your daughter/son and see them so deep in sleep, that they barely toss and turn. The number ANC 7250 is the sweetest sound we have gotten in the week leading up. Especially considering she starts her MTX chemo Sunday morning. So she needs all your support, prayers & strength this week so we can all get what we want. Isabel the Warrior Princess home for Christmas. To be @ the Santiesteban Family Christmas Dinner. Where what ever drama, fight, gossip. For that one day our family joins together for the love of unity and laughs the night away. I made the mistake last time I was deeply depressed & stressed severly to miss that event. The following year was one of my worse. So I know that even if i'm the crazy one in the room. Isabel will be the angel that will light it up and blind others that I am there. I can't wait for pierna, white rice, black beans, ropa vieja & tostones(sp). So Familia Santiesteban I love you all, i can feel the love you all give me. Don't ever think I take it for advantage. Just cause you talk and I don't listen doesn't mean I don't hear you when I'm alone with my thoughts.
Papi:
I'm sorry I stormed out but I honestly can't give you a two day in advance schedule until she is in remission. I know I'm just your son and your the "boss" as my father. I know you want to do the Aldo's Studio. It is your passion and it was what you were meant to do. They say its not the photographer but the eye behind it. I always knew there is love behind it, but at least you have the seamtress back. You have Lester temporarily back for a big job. Lester is a harder worker than I ever was, while with you. I understand that I have taken advantage time and time again. Its time to end the cycle. I wasn't a good employee, you only kept me on cause you love me. But I am not going off the deep end. I honestly want to always be there for Isabel. I feel her pain, but i want to give her my strength.
If my belief in her ever wavers than she will not be as happy as she has been these last few days. The doctors were expecting her counts to not come up till middle of next week. But here we are Saturday (well techinally) Sunday morning. Her counts are beyond where they wanted them to be. I was worried Thursday when they wanted to push up the chemo. But mom told me just what i needed to hear to know that she needed it right away. I hear no evil see, speak no evil, hear no evil. I just want to share the strength that my Warrior Princess has shown. I can't fail her again. I would never be able to live with myself, if I didn't give her my all at this time.
I know I f@cked up when I was depressed. Yes I disappeard for a week. Yes I can't remember 95 percent of what happened. Cause I let the pain and darkness consume me. I didn't know day from night. But its night now and I'm seeing clearer than I have in years. Even if I don't know much I know that Isabel the Warrior Princess is my "light house" leading me ashore. No matter the time of day or what weather mother nature decides to cast down.
I actually wrote this on 12/17........its just hard to tell night from day especially after daylight savings time...................cause when I come in to the hospital its dark and when I leave its dark. Sometimes when your sleep deprived you may think you hear creaks and noises, it might just be the house is old or needs repair. So have I really solved any big mystery, not really I just realized its a lot easier to control my Bi Polar disorder, just take the prescribed pills, see my psychologist, try to do more positive than negative, and as every good news anchor I need a good sign off..........................
Papi:
I'm sorry I stormed out but I honestly can't give you a two day in advance schedule until she is in remission. I know I'm just your son and your the "boss" as my father. I know you want to do the Aldo's Studio. It is your passion and it was what you were meant to do. They say its not the photographer but the eye behind it. I always knew there is love behind it, but at least you have the seamtress back. You have Lester temporarily back for a big job. Lester is a harder worker than I ever was, while with you. I understand that I have taken advantage time and time again. Its time to end the cycle. I wasn't a good employee, you only kept me on cause you love me. But I am not going off the deep end. I honestly want to always be there for Isabel. I feel her pain, but i want to give her my strength.
If my belief in her ever wavers than she will not be as happy as she has been these last few days. The doctors were expecting her counts to not come up till middle of next week. But here we are Saturday (well techinally) Sunday morning. Her counts are beyond where they wanted them to be. I was worried Thursday when they wanted to push up the chemo. But mom told me just what i needed to hear to know that she needed it right away. I hear no evil see, speak no evil, hear no evil. I just want to share the strength that my Warrior Princess has shown. I can't fail her again. I would never be able to live with myself, if I didn't give her my all at this time.
I know I f@cked up when I was depressed. Yes I disappeard for a week. Yes I can't remember 95 percent of what happened. Cause I let the pain and darkness consume me. I didn't know day from night. But its night now and I'm seeing clearer than I have in years. Even if I don't know much I know that Isabel the Warrior Princess is my "light house" leading me ashore. No matter the time of day or what weather mother nature decides to cast down.
I actually wrote this on 12/17........its just hard to tell night from day especially after daylight savings time...................cause when I come in to the hospital its dark and when I leave its dark. Sometimes when your sleep deprived you may think you hear creaks and noises, it might just be the house is old or needs repair. So have I really solved any big mystery, not really I just realized its a lot easier to control my Bi Polar disorder, just take the prescribed pills, see my psychologist, try to do more positive than negative, and as every good news anchor I need a good sign off..........................
ISABEL WARRIOR PRINCESS.............."ATTACKED BUT NEVER DEFEATED"
Friday, December 16, 2011
Sleep?
So that is suppose to be the most important part of letting your body
recover, they say. But how can you sleep next to your 4 year old
daughter under going chemo @childrenshealth in Washington DC. How can
you sleep when the night you have the night shift, is the night she is
full of bountiful joyous energy. How can I tell her to go to sleep when
I want to be greedy and soak up the radiance, that is the smile of the
Warrior Princess. How can I close my eyes when the next moment she has
to rush to the bathroom because, she hasn't had a bowel movement in a
week cause of the chemo. How can I relax and be at complete ease when I
know that when its been a week that the moment she has "the break
through, it means your on high alert for diarrhea. NaS famously says to
us hip hop heads "sleep is the cousin of death", if you stop and think
about that, no place does that apply more than at a hospital.
Don't get me wrong I'm not trying to turn this into something morbid. But its a great metaphor because it signifies you have to have to be on your toes. You can't just go by the vitals, the side effects, the chemo treatments, the road map to recovery, all the info you read on the internet. At the end of the day you have to trust that you know your child well enough to convey to the nursing staff most importantly how she reacts in a normal circumstances. Its the easiest and most common reaction to want to snap at them. But in any hierarchy there is a pecking order; be it good, bad, or indifferent (as my mom famously repeats as if a mantra lol). But if you actually wade though the haze, that is for a lack of a better term crust in your eye. Its 3:00 am you lay down and try to let your mind rest, but is their rest for the weary? Does my daughter ever get to fully relax and rest through all of this? Or is her body continuously fighting even more so in her sleep.
Dreams..................................................................................................................................
What are her dreams like now that she has undergone all this trauma. If I wake up at night paranoid she might be gagging on her phlegm. Worry if i fall to far asleep I won't catch a symptom that could have major implications. Does she still dream of fairy tales and make believe lands? Has this experience cursed her into becoming more mature than she should have to be? Will she ever get to be a kid again? Or should she get use to being a childhood cancer survivor? If a tree falls in the forest was it because it couldn't withstand the chemo treatment? Does sharing my inner most thoughts make a difference? If it only helps me is it selfish or selfless? Did the hippies have it right by just wanting to be free and wanting to spread love? Isn't that what every charity foundation strive for? If your mission statement of your charity not about uplifting your target demographic does it serve a purpose? If I tried to go from DC to LA driving stopping at every children's hospital how many more "miracle" stories would I find? If I made the same drive and looked at into the darker rooms, would I find a child alone with a bare wall, and nothing but a soft glow of a tv reflecting across their face? If someone shares their story of having a family member having cancer, cancer survivor, cancer family member, does it hurt or help? If I always look down in the hospital for fear of seeing the look of dispare on a parents face, will I miss the one parent who is smiling. If I don't talk to the nurses would I have as much of an understanding about my daughter's conditions? If I wasn't slightly manic would I be as useful to Isabel? Does my mimicking the inspirational movie "La vita è bella" really work, or is it a hollywood facade? Why does the cage bird sing, because when your mind is free, you can go where ever it takes it? If you focus all your energy on giving back and being positive, can evil and negativity still defeat it? How many licks does it take to get to the center of a tootsie roll pop? The world may never know...........................
Thus concludes the questions that have run through my head through this process. I'd love to say that was the extent of it. But the creative mind is never at rest, for it wants to work harder and faster to help you try and answer the question, it before someone else raises their hands.
Don't get me wrong I'm not trying to turn this into something morbid. But its a great metaphor because it signifies you have to have to be on your toes. You can't just go by the vitals, the side effects, the chemo treatments, the road map to recovery, all the info you read on the internet. At the end of the day you have to trust that you know your child well enough to convey to the nursing staff most importantly how she reacts in a normal circumstances. Its the easiest and most common reaction to want to snap at them. But in any hierarchy there is a pecking order; be it good, bad, or indifferent (as my mom famously repeats as if a mantra lol). But if you actually wade though the haze, that is for a lack of a better term crust in your eye. Its 3:00 am you lay down and try to let your mind rest, but is their rest for the weary? Does my daughter ever get to fully relax and rest through all of this? Or is her body continuously fighting even more so in her sleep.
Dreams..................................................................................................................................
What are her dreams like now that she has undergone all this trauma. If I wake up at night paranoid she might be gagging on her phlegm. Worry if i fall to far asleep I won't catch a symptom that could have major implications. Does she still dream of fairy tales and make believe lands? Has this experience cursed her into becoming more mature than she should have to be? Will she ever get to be a kid again? Or should she get use to being a childhood cancer survivor? If a tree falls in the forest was it because it couldn't withstand the chemo treatment? Does sharing my inner most thoughts make a difference? If it only helps me is it selfish or selfless? Did the hippies have it right by just wanting to be free and wanting to spread love? Isn't that what every charity foundation strive for? If your mission statement of your charity not about uplifting your target demographic does it serve a purpose? If I tried to go from DC to LA driving stopping at every children's hospital how many more "miracle" stories would I find? If I made the same drive and looked at into the darker rooms, would I find a child alone with a bare wall, and nothing but a soft glow of a tv reflecting across their face? If someone shares their story of having a family member having cancer, cancer survivor, cancer family member, does it hurt or help? If I always look down in the hospital for fear of seeing the look of dispare on a parents face, will I miss the one parent who is smiling. If I don't talk to the nurses would I have as much of an understanding about my daughter's conditions? If I wasn't slightly manic would I be as useful to Isabel? Does my mimicking the inspirational movie "La vita è bella" really work, or is it a hollywood facade? Why does the cage bird sing, because when your mind is free, you can go where ever it takes it? If you focus all your energy on giving back and being positive, can evil and negativity still defeat it? How many licks does it take to get to the center of a tootsie roll pop? The world may never know...........................
Thus concludes the questions that have run through my head through this process. I'd love to say that was the extent of it. But the creative mind is never at rest, for it wants to work harder and faster to help you try and answer the question, it before someone else raises their hands.
Thursday, December 15, 2011
A moment of silence after another day with the Warrior Princess
Just wanted to just say thank you all who have subscribed to this page. The gossip of the Warrior Princess needs to be told. So that all girls undergoing chemo know that they are still the princess they were meant to be. That nobody has to fight harder than woman. Also just in general like I told Isabel today. You never stop fighting because its not who is stronger, its who has the focus, determination and inner strength to know they will not lose.
From day 1 is wasn't cockiness or arrogance that i knew she would beat it. It was my utter belief in my daughter the love of my life. The one that has brought me out of the depth of darkness. To realize that my calling was to always tell her story. That everybody needs to realize that children are the strength we all need to lean on. Because we were once them, and along the way somebody forgot how special we all are. That's basically what its all about. Finding your inner strength and voice, and not wavering once you focus in on your mission in life.
I get it now I understand the true meaning of being a parent. To guide your child to be the best they can be, and enduring the pain in order for them to become far greater than yourself. Anything less than that is doing them a disservice. Nobody wants to truly be angry. We all would love to stay laughing in life. But its actually quite easy to do, just know that something positive will come if you put enough absolute belief into something your passionate about.
I understand why their have been some of the most successful people in this world that have bi-polar disorder. Its not that their "crazy" its that when they harness the power that is the mania. Control the depths of depression, they can surprise just about everybody. I will be an open book through out all this cause I have always said that, their is nothing in life I regret. For each event lead me to another, and when I look back and connect the dots. It lead me to my epiphany that i just want to make the world smile. One person at a time. So if you see me walking down the road just smile back. It will make my day.
From day 1 is wasn't cockiness or arrogance that i knew she would beat it. It was my utter belief in my daughter the love of my life. The one that has brought me out of the depth of darkness. To realize that my calling was to always tell her story. That everybody needs to realize that children are the strength we all need to lean on. Because we were once them, and along the way somebody forgot how special we all are. That's basically what its all about. Finding your inner strength and voice, and not wavering once you focus in on your mission in life.
I get it now I understand the true meaning of being a parent. To guide your child to be the best they can be, and enduring the pain in order for them to become far greater than yourself. Anything less than that is doing them a disservice. Nobody wants to truly be angry. We all would love to stay laughing in life. But its actually quite easy to do, just know that something positive will come if you put enough absolute belief into something your passionate about.
I understand why their have been some of the most successful people in this world that have bi-polar disorder. Its not that their "crazy" its that when they harness the power that is the mania. Control the depths of depression, they can surprise just about everybody. I will be an open book through out all this cause I have always said that, their is nothing in life I regret. For each event lead me to another, and when I look back and connect the dots. It lead me to my epiphany that i just want to make the world smile. One person at a time. So if you see me walking down the road just smile back. It will make my day.
Wednesday, December 14, 2011
Isabel Warrior Princess: Autumn Follicles
Greetings and salutations
I just want to start off by saying. Thank you for the overwhelming support for my updates. I really just started them to kill time when Isabel slept, and I was up at night. But because of the response it really has inspired me to want to write more. So like some writers I like to think of a Subject name to try and capture the mood of the week. Sort of like the name of a chapter so to speak. I guess you could say going through this is like a new chapter each week. Who knows what will happen at any given time or around the hypothetical corner. So the title this week is Autumn Follicles. Felt I should touch on the meaning at the beginning cause at times they relate to me as well as Isabel. Through all this we are more connected than I even realized. Guess emotions and strengths can be passed on metaphysically if the bond is there. Or quite simply it might be that Isabel is that "special". I do admit at first glance the title seems a bit like an odd couple. So I'll just list the two dictionary definitions and start there
Autumn is one of the four temperate seasons. Autumn marks the transition from summer into winter usually in September (Northern Hemisphere) or March (Southern Hemisphere) when the arrival of night becomes noticeably earlier.
So basically through this process we went from the blissful time that is summer with kids. And all that entails (parks, play grounds, trips to the beach, more ice cream, more day light to play, POOL). The last part about the arrival of night becoming noticeable earlier................well if being in the hospital doesn't feel like being in the dark (not knowing what is in front of you, waiting for the sunlight to come back up), than I'm a worse writer then I thought lol. I do admit to being terrible at grammar.
Now I'll pause relating it to Isabel to actually use this as a way to share a bit of my story. Seeing how she is my mini me, in more ways than looks. But not with what I'm about to share. I feel as though if I am openly sharing her disease and giving the details, the least I can do is tell mine.
I would say roughly 6 years ago I was diagnosed with Bi Polar Disorder.
Whew that wasn't so hard. I know that its a lot more common these days. And understanding of it is getting better. But I think there is still a stigma attached to it, and is the butt of many jokes. Not that I actually get offended cause us Bi-Polars wouldn't be able to survive without a sense of humor. To use a quote as I so often to do "Life is a tragedy to those who feel, and a comedy for those who think". I won't get into to many details as not to make this about me. But when I mention certain things or talk about breakdowns. They are very much bi polar related. When the nurses and doctors tell parents that you have to be strong for your kids. To make sure you take care of yourself, because your no good to them if your mentally or physically exhausted. Its a nice steel toe boot to the culo, that i need to buck up and get a hold of this tricky little disease. You see I know for a lot of people or maybe a few its just an excuse for somebody to be; lazy, a liar, a cheater, a thief, a delinquent, worthy of being left in jail. But to those inflicted its a daily struggle to act "normal". You have to be on top of your routine of it could send you into a manic state of depression. I have experience the utmost of the manic episode and recently have hit the deepest of depression. Luckily for my case it hasn't included suicidal thoughts. Their are different levels just like their are different stages in cancer. *DISCLAIMER: I AM IN NO WAY COMPARING MY DISEASE WITH ISABEL'S". Just a simple metaphor. I would say I had to talk about me being BI POLAR. Cause it shouldn't have to be anymore of a secret than having Diabetes. Both require a lifestyle in order to maintain it, both are genetic and not a choice. Now I could go on a rant about pharmacutial compaines, but I think Michael Moore beat me too it lol. Also by sharing this I can be more open and honest about my mind set through all this. The greatest lesson Isabel has thought me so far is, you are always stronger than you think you can possibly be. If she can beat a disease designed to cause death. I damn sure better be able to put in the work to get a gripe of mine, and finally consistently be who I was meant to be "Father of the Warrior Princess". To fufil what I hope to be my legacy one day. That when I am no longer here and my name is brought up. That they at least say when Aldo was around he made me laugh once. For that is the strongest medicine that no scientist or company can reproduce, with the same potency for healing. And so thus concludes my special announcement, please continue to the real reason we are all here.
Back to the explanation of the title
Follicles
Hair production occurs in phases, including a growth phase (anagen), and cessation phase (catagen), and a rest phase (telogen). Stem cells are principally responsible for the production of hair.
The most obivious correlation between the two words in the title is follicles = hair autumn = fall. Not sure if its been discussed in previous updates. But yes Isabel's hair has fallen out. I would say she has lost 70%. But luckily her vibrant curls and natural volume hide it in more pictures. By the middle of January wouldn't be surprised if she was close to bald. Now i still remember the exact moment Ivey heard the doctor say that back in October. I heard the words in her head "But it took her so long to grow that beautiful long curly hair". You see Isabel had the most slowing growing hair. I swear she grew taller faster than her hair grew lol. So to us this was going to be a big deal that would really upset her. Well being the Warrior Princess she is, she took it in stride and made a joke of it. To see your daughter pull chucks of hair out and play with it, and blow it at you like it funny. Well how can you tell me children aren't the Warriors. We were able to relate it to her Tia Cristina, because she had under gone Chemo when Isabel was 3. So she remembered Tia being bald. And Tia being a true Santiesteban went around and out proud with big (literally lol sorry tia) bold head. Thus discovery that she shared the same shaped head as her brother lol. Add to the fact that her grand daughter Lily looked so much like her and was bald and big headed (Love you Raquel lol). Thus when we explained it to her we just told her that she was special like her tia. That they would now share a bond cause they had special buttons and were girls who would be bald for a bit. But the fact that we could tell Isabel when she got better and beat her cancer, her hair would grow back longer, stronger and prettier, seemed to soothe her enough. I just kept reminding her that in Tangled a disney movie. Rapunzel thought all her strenghty and uniquiness was in her long flowing blonde hair. But at the end of the movie her love interest and love of her life was dying. But the kicker was that the hair is what kept her mother young for she was over 100 with the looks of a 30 yr old. I know I know what mother wouldn't want to keep that magic to themselves and keep her up in a tower. But what I'm getting at is her love interest was dying and instead of letting her use her special hair power to save him. He cut off her hair so she would be free of the warden like control of her mother. Sitting there crying over his lifeless body(yes Disney is quite sad for a kid movie). Something special happened her tear fell on his wound and because she loved him so much, she was able to heal him. She than realized that her true power wasn't in her hair, but it was always inside of her she just didn't know how to find it, until meet with the most dire situation. So moral of story is woman stop spending hours on your hair............you still will always have the power regardless. But fixing it up is appreciated as well lol.
Alrighty think I about exhausted all the similarties of hair. Maybe all those years of being around so many woman family members and a tia who was a hair stylist, gave me a bit to much insight into woman's hair lol. Or too much of Lifetime and Oxygen channel lol.
Think I've rambled enough and made you prove you wanted to actually hear about Isabel. On to the update finally. When we last left off Isabel was going home riding off into the sunset. She slept so long and hard. Nothing like being at home. Even with the knowledge she had to go back to the hospital clinic Saturday the 19th to get a shot that helps boost her white blood cells in her leg. She still was upbeat, hey whats one shot she must have thought when I get to go back home. As long as it didn't include any type of bandage she didn't let much get to her. But is so common unfortunately in the hospital there was a mix up. They couldn't find the shot mind you this is a $3,000 shot. Is Michael Moore listening to that one lol. Luckily Ivey has great insurance so it offsets most of the price. So there they are not even 18 hours removed from the hospital. Having to wait and wait for them to figure out their mistake to give her the shot that she needs since the chemo drops her white blood count to zero. Needless to say Ivey was BPO Beyond Pissed Off with just cause. Who in their ever loving mind misplaces a shot of that expense. Only in America I assume lol. But after 4 hours they realized that Opps they never ordered the shot, since it was a special order. Oh silly them they just happened to forget that they just wasted an afternoon of a kid with cancer, when she could be at home. Why would she not want to be back at the hospital. The food is so good here /sarcasm. But for Isabel it was just a day she got to hang out with Mami at the Kids Hospital, and in her words "They didn't poke me either". That was true well until they had to come back the very next day. Ahh hospital living now that is an experience like dating an unstable person. It can be fun one minute the next your crying cause your in pain.
So we were looking forward to a week at home and an appt with the clinic later on for her to start her next treatment. Just to bring you back up to speed. First cycle of chemo she went back after 1 day home. Second cycle she spend 2 days home. So why would the third disappoint. On Day 3 Isabel had a high fever which meant straight to the ER. Yay another trip to the ER that was not as entertaining as the TV Show. I mean give us a little Grey's Anatomy, throw us a bone. So we already knew that meant another unexpected (but at this point a little expected) week at the hospital added on to her scheduled time.
I would say that in typical Warrior Princess fashion she initially let her anger peek thru. But put it away as to not overwhelm the common folk. Guess she decided she might as well try and make the best and continue laughing. Maybe it was the thought that when she's at the hospital she learned that she is a pro at all board games and dominoes lol. She was now more familiar with her different nurses, and had a few convo's and jokes exchanged. One thing is that I believe she has made every tech & nurse leave the room smiling or laughing at one point. There are some that even when not assigned to her, come by to just say hey and see that smile. I do feel lucky that even though I'm the one usually there to hold her down when they have to take bandages off. I get that smile all the time. She still loves her Papi even after he left them hurt her. I guess as parents we need to take that pain, do what we must to do what we feel will be in the best interest for our children. But hearing her plead to me Papi why are you letting them hurt me. It it just really breaks my heart, but if that's not a dads job to take that abuse and pain, my dad is a classic example of the silent stoic hero. If I was going to try and be her savior or hero I needed to reach down where I had that absolute resolve when this first started.
Following with the theme of Papi being there for the more painful experiences. On the 24th of November she had one of the most to that point difficult side effect to deal with. She had a severely bad nose bleed. As they are know to do it came unexpected, without a hint it was coming, So there we are Papi and Isabel watching tv, playing a game, really can't remember at this point. But BOOM blood starts tickling out. She had a very brief nose bleed earlier but that lasted about a minute. Well this one went on for a good two hours. Add to that the coming and going of different tech, nurses, doctor, eye throat eye doctor. To say I was submerged in deep water trying to swim up to the top, might sound cliche considering water and blood both liquid. But that was such a hard night. I really won't go to much into detail but they had to squeeze her nose to try and stop the bleeding. Which after a few minutes really starts to hurt. Seeing wash cloth after wash cloth fill with blood, was scary to me so I can only assume how terrified she was. Actually I could sense it by the look in her eyes, the sound of her voice. So fast forward nearly 3 hours later, after a platelets transfusion and a blood transfusion. Isabel was finally able to settle down and try and recharge her batteries. For while they were trying to stop the bleeding. She let out her warrior roar and told them exactly what they could do. GET OUT OF MY ROOM, YOU HURT ME, GET OUT, I DON"T LIKE YOU. Hey better them then me. At least they getting paid to get yelled at lol.
Luckily that was the worse night there, and Mom didn't have to experience her daughter like that. Have to find one positive even in the most dire situation. Its the only way to really survive this or life in general. I feel and benefited from trying to keep positive thoughts in my head. To keep reminding myself you had to expect all this, but you will get back Isabel Marie Santiesteban Princess Warrior, as Isa says her full name is lol.
So this brings us up until that weekend where we were hoping would be when she would finally break the constant fever she had. Another update to come within a couple days. Thanks for reading.
I just want to start off by saying. Thank you for the overwhelming support for my updates. I really just started them to kill time when Isabel slept, and I was up at night. But because of the response it really has inspired me to want to write more. So like some writers I like to think of a Subject name to try and capture the mood of the week. Sort of like the name of a chapter so to speak. I guess you could say going through this is like a new chapter each week. Who knows what will happen at any given time or around the hypothetical corner. So the title this week is Autumn Follicles. Felt I should touch on the meaning at the beginning cause at times they relate to me as well as Isabel. Through all this we are more connected than I even realized. Guess emotions and strengths can be passed on metaphysically if the bond is there. Or quite simply it might be that Isabel is that "special". I do admit at first glance the title seems a bit like an odd couple. So I'll just list the two dictionary definitions and start there
Autumn is one of the four temperate seasons. Autumn marks the transition from summer into winter usually in September (Northern Hemisphere) or March (Southern Hemisphere) when the arrival of night becomes noticeably earlier.
So basically through this process we went from the blissful time that is summer with kids. And all that entails (parks, play grounds, trips to the beach, more ice cream, more day light to play, POOL). The last part about the arrival of night becoming noticeable earlier................well if being in the hospital doesn't feel like being in the dark (not knowing what is in front of you, waiting for the sunlight to come back up), than I'm a worse writer then I thought lol. I do admit to being terrible at grammar.
Now I'll pause relating it to Isabel to actually use this as a way to share a bit of my story. Seeing how she is my mini me, in more ways than looks. But not with what I'm about to share. I feel as though if I am openly sharing her disease and giving the details, the least I can do is tell mine.
I would say roughly 6 years ago I was diagnosed with Bi Polar Disorder.
Whew that wasn't so hard. I know that its a lot more common these days. And understanding of it is getting better. But I think there is still a stigma attached to it, and is the butt of many jokes. Not that I actually get offended cause us Bi-Polars wouldn't be able to survive without a sense of humor. To use a quote as I so often to do "Life is a tragedy to those who feel, and a comedy for those who think". I won't get into to many details as not to make this about me. But when I mention certain things or talk about breakdowns. They are very much bi polar related. When the nurses and doctors tell parents that you have to be strong for your kids. To make sure you take care of yourself, because your no good to them if your mentally or physically exhausted. Its a nice steel toe boot to the culo, that i need to buck up and get a hold of this tricky little disease. You see I know for a lot of people or maybe a few its just an excuse for somebody to be; lazy, a liar, a cheater, a thief, a delinquent, worthy of being left in jail. But to those inflicted its a daily struggle to act "normal". You have to be on top of your routine of it could send you into a manic state of depression. I have experience the utmost of the manic episode and recently have hit the deepest of depression. Luckily for my case it hasn't included suicidal thoughts. Their are different levels just like their are different stages in cancer. *DISCLAIMER: I AM IN NO WAY COMPARING MY DISEASE WITH ISABEL'S". Just a simple metaphor. I would say I had to talk about me being BI POLAR. Cause it shouldn't have to be anymore of a secret than having Diabetes. Both require a lifestyle in order to maintain it, both are genetic and not a choice. Now I could go on a rant about pharmacutial compaines, but I think Michael Moore beat me too it lol. Also by sharing this I can be more open and honest about my mind set through all this. The greatest lesson Isabel has thought me so far is, you are always stronger than you think you can possibly be. If she can beat a disease designed to cause death. I damn sure better be able to put in the work to get a gripe of mine, and finally consistently be who I was meant to be "Father of the Warrior Princess". To fufil what I hope to be my legacy one day. That when I am no longer here and my name is brought up. That they at least say when Aldo was around he made me laugh once. For that is the strongest medicine that no scientist or company can reproduce, with the same potency for healing. And so thus concludes my special announcement, please continue to the real reason we are all here.
Back to the explanation of the title
Follicles
Hair production occurs in phases, including a growth phase (anagen), and cessation phase (catagen), and a rest phase (telogen). Stem cells are principally responsible for the production of hair.
The most obivious correlation between the two words in the title is follicles = hair autumn = fall. Not sure if its been discussed in previous updates. But yes Isabel's hair has fallen out. I would say she has lost 70%. But luckily her vibrant curls and natural volume hide it in more pictures. By the middle of January wouldn't be surprised if she was close to bald. Now i still remember the exact moment Ivey heard the doctor say that back in October. I heard the words in her head "But it took her so long to grow that beautiful long curly hair". You see Isabel had the most slowing growing hair. I swear she grew taller faster than her hair grew lol. So to us this was going to be a big deal that would really upset her. Well being the Warrior Princess she is, she took it in stride and made a joke of it. To see your daughter pull chucks of hair out and play with it, and blow it at you like it funny. Well how can you tell me children aren't the Warriors. We were able to relate it to her Tia Cristina, because she had under gone Chemo when Isabel was 3. So she remembered Tia being bald. And Tia being a true Santiesteban went around and out proud with big (literally lol sorry tia) bold head. Thus discovery that she shared the same shaped head as her brother lol. Add to the fact that her grand daughter Lily looked so much like her and was bald and big headed (Love you Raquel lol). Thus when we explained it to her we just told her that she was special like her tia. That they would now share a bond cause they had special buttons and were girls who would be bald for a bit. But the fact that we could tell Isabel when she got better and beat her cancer, her hair would grow back longer, stronger and prettier, seemed to soothe her enough. I just kept reminding her that in Tangled a disney movie. Rapunzel thought all her strenghty and uniquiness was in her long flowing blonde hair. But at the end of the movie her love interest and love of her life was dying. But the kicker was that the hair is what kept her mother young for she was over 100 with the looks of a 30 yr old. I know I know what mother wouldn't want to keep that magic to themselves and keep her up in a tower. But what I'm getting at is her love interest was dying and instead of letting her use her special hair power to save him. He cut off her hair so she would be free of the warden like control of her mother. Sitting there crying over his lifeless body(yes Disney is quite sad for a kid movie). Something special happened her tear fell on his wound and because she loved him so much, she was able to heal him. She than realized that her true power wasn't in her hair, but it was always inside of her she just didn't know how to find it, until meet with the most dire situation. So moral of story is woman stop spending hours on your hair............you still will always have the power regardless. But fixing it up is appreciated as well lol.
Alrighty think I about exhausted all the similarties of hair. Maybe all those years of being around so many woman family members and a tia who was a hair stylist, gave me a bit to much insight into woman's hair lol. Or too much of Lifetime and Oxygen channel lol.
Think I've rambled enough and made you prove you wanted to actually hear about Isabel. On to the update finally. When we last left off Isabel was going home riding off into the sunset. She slept so long and hard. Nothing like being at home. Even with the knowledge she had to go back to the hospital clinic Saturday the 19th to get a shot that helps boost her white blood cells in her leg. She still was upbeat, hey whats one shot she must have thought when I get to go back home. As long as it didn't include any type of bandage she didn't let much get to her. But is so common unfortunately in the hospital there was a mix up. They couldn't find the shot mind you this is a $3,000 shot. Is Michael Moore listening to that one lol. Luckily Ivey has great insurance so it offsets most of the price. So there they are not even 18 hours removed from the hospital. Having to wait and wait for them to figure out their mistake to give her the shot that she needs since the chemo drops her white blood count to zero. Needless to say Ivey was BPO Beyond Pissed Off with just cause. Who in their ever loving mind misplaces a shot of that expense. Only in America I assume lol. But after 4 hours they realized that Opps they never ordered the shot, since it was a special order. Oh silly them they just happened to forget that they just wasted an afternoon of a kid with cancer, when she could be at home. Why would she not want to be back at the hospital. The food is so good here /sarcasm. But for Isabel it was just a day she got to hang out with Mami at the Kids Hospital, and in her words "They didn't poke me either". That was true well until they had to come back the very next day. Ahh hospital living now that is an experience like dating an unstable person. It can be fun one minute the next your crying cause your in pain.
So we were looking forward to a week at home and an appt with the clinic later on for her to start her next treatment. Just to bring you back up to speed. First cycle of chemo she went back after 1 day home. Second cycle she spend 2 days home. So why would the third disappoint. On Day 3 Isabel had a high fever which meant straight to the ER. Yay another trip to the ER that was not as entertaining as the TV Show. I mean give us a little Grey's Anatomy, throw us a bone. So we already knew that meant another unexpected (but at this point a little expected) week at the hospital added on to her scheduled time.
I would say that in typical Warrior Princess fashion she initially let her anger peek thru. But put it away as to not overwhelm the common folk. Guess she decided she might as well try and make the best and continue laughing. Maybe it was the thought that when she's at the hospital she learned that she is a pro at all board games and dominoes lol. She was now more familiar with her different nurses, and had a few convo's and jokes exchanged. One thing is that I believe she has made every tech & nurse leave the room smiling or laughing at one point. There are some that even when not assigned to her, come by to just say hey and see that smile. I do feel lucky that even though I'm the one usually there to hold her down when they have to take bandages off. I get that smile all the time. She still loves her Papi even after he left them hurt her. I guess as parents we need to take that pain, do what we must to do what we feel will be in the best interest for our children. But hearing her plead to me Papi why are you letting them hurt me. It it just really breaks my heart, but if that's not a dads job to take that abuse and pain, my dad is a classic example of the silent stoic hero. If I was going to try and be her savior or hero I needed to reach down where I had that absolute resolve when this first started.
Following with the theme of Papi being there for the more painful experiences. On the 24th of November she had one of the most to that point difficult side effect to deal with. She had a severely bad nose bleed. As they are know to do it came unexpected, without a hint it was coming, So there we are Papi and Isabel watching tv, playing a game, really can't remember at this point. But BOOM blood starts tickling out. She had a very brief nose bleed earlier but that lasted about a minute. Well this one went on for a good two hours. Add to that the coming and going of different tech, nurses, doctor, eye throat eye doctor. To say I was submerged in deep water trying to swim up to the top, might sound cliche considering water and blood both liquid. But that was such a hard night. I really won't go to much into detail but they had to squeeze her nose to try and stop the bleeding. Which after a few minutes really starts to hurt. Seeing wash cloth after wash cloth fill with blood, was scary to me so I can only assume how terrified she was. Actually I could sense it by the look in her eyes, the sound of her voice. So fast forward nearly 3 hours later, after a platelets transfusion and a blood transfusion. Isabel was finally able to settle down and try and recharge her batteries. For while they were trying to stop the bleeding. She let out her warrior roar and told them exactly what they could do. GET OUT OF MY ROOM, YOU HURT ME, GET OUT, I DON"T LIKE YOU. Hey better them then me. At least they getting paid to get yelled at lol.
Luckily that was the worse night there, and Mom didn't have to experience her daughter like that. Have to find one positive even in the most dire situation. Its the only way to really survive this or life in general. I feel and benefited from trying to keep positive thoughts in my head. To keep reminding myself you had to expect all this, but you will get back Isabel Marie Santiesteban Princess Warrior, as Isa says her full name is lol.
So this brings us up until that weekend where we were hoping would be when she would finally break the constant fever she had. Another update to come within a couple days. Thanks for reading.
There is no passion to be found playing small in settling for a life
that is less than the one you are cable of living - Nelson Mandela
Think the meaning of her name is very fitting
Isabel meaning and name origin
Isabel \i-sa-bel\ as a girl's name is pronounced iz-a-bel. It is of Hebrew origin, and the meaning of Isabel is "God's promise". Spanish variant of Elizabeth. Literary: Henry James named the heroine of his "Portrait of a Lady" Isabel Archer. Isabella is the name of several Spanish queens. See also Chavela. Actresses Isabella Rosellini, Isabelle Adjani; fashion designer Isabel Toledo.Isabel has 43 variant forms: Bel, Belia, Belicia, Belita, Bell, Bella, Belle, Bellita, Chabeli, Chabelita, Ib, Ibbie, Isa, Isabeau, Isabela, Isabele, Isabelita, Isabell, Isabella, Isabelle, Isbel, Ishbel, Isobel, Isobell, Isobella, Isobelle, Issie, Issy, Izabel, Izabella, Izabelle, Izzie, Izzy, Marisabel, Sabella, Sabelle, Ysabeau, Ysabel, Ysabella, Ysobel, Yzabelle, Yzobel and Yzobelle.
For more information, see also the related name Franisbel.
Baby names that sound like Isabel are Ysbel and Ysabell.
View a list of the 9 names that reference Isabel.
Popularity of Isabel
Isabel is a very popular first name for women (#313 out of 4276) and also a very popular surname or last name for all people (#16885 out of 88799). (1990 U.S. Census)Displayed below is the baby names popularity of the name Isabel for girls. (2010 statistics)
Tuesday, December 13, 2011
Monday, December 12, 2011
Chronicles of the Warrior Princess: Finding the new "norm" (Update from 12/7)
Greetings everybody,
First off gotta apologize for such a long gap in updates. Its been so busy between the hospital and work. It seems by the time I get to put my feet up I'm completely wiped out. Also through all of this the concept of time is completely messed up. You never really know what day it is you kinda are just working off when you have to be at work or hospital. My calendar is like the "cancer calendar" as opposed to say the Mayan calendar. You based things off when she is having what procedure, or under going chemo, or when she will have low white blood counts, when she's ok to actually venture outside for a bit. Time is a blur right now really. At the hospital days can seem like an eternity or they can go by in a flash. One minute your sitting there just kinda taking in the day. Mentally going over things you need to do or just putting your mind at ease. But most of the time you can't really plan to have time to relax. But that is a mere drop of water in the ocean that is what Isabel is going through. I can't bring myself to outwardly complain about anything these days. It feels like why do i need to complain for the sake of hearing myself complain. When Isabel now complains about a pain or ache, its dealt with a bit more seriously. It could be an infection or it could be nothing. No more putting off calling the doctors until the next day. Things have to always be taken seriously even if you think its nothing.
But in all honestly like the saying goes "their is no rest for the weary". If its not physically tired, its mentally or emotionally drained. How Isabel keeps that radiate smile most of the time is beyond me. The nurses all love her for that very thing. It has to be hard on anyone to see a sick child period. But at least you get a small amount of comfort that they can still smile or laugh. That's why I try to capture a picture of her smiling everyday. When she isn't feeling good I look at that smile, the twinkle in her eye and that some how gets me by for another moment. But as a parent if your not with her your thinking about her. Sometimes its hard to have silent moments, cause you don't want your thoughts to wander to far. Your constantly trying to repeat positive mantras to yourself. You believe everything will be alright, you trust in your heart she will be ok. So you just try to shake any negative thought out of your head. However hard you try though there will be that one random moment where it just hits you like a tidal wave. Recently I had to delivery some chairs we had done for this hotel out in Delaware. So I'm driving down 95 just kinda jamming to local stations. Isabel was home at that point so I was happy about that. As I get further out and lose the local stations I just start scanning the radio to pick up a station. As I come up to the next station the tune initially catches my ear. Had a nice mellow sound even if it was country lol. I always joke with my step mom that I do actually like some country these days. But she always has to remind me how when I was 13, I would get upset if she tried to make me listen to it in the car lol. But back to me driving up 95 in are box truck heading to Delaware flipping thru stations and I stop on probably the 3rd country station I heard. I thought I heard the word cancer, but thought it was just in my head. Than I start listening to the words. When she said this one particular line I just busted out crying out of no where. It was the chorus I heard the words let it really sink in and there goes the water works. Guess crying can help cleanse the soul (or as they say so guys feel better about crying lol).
Chorus:
When you’re weak, I’ll be strong
When you let go, I’ll hold on
When you need to cry, I swear that I’ll be there to dry your eyes
When you feel lost and scared to death,
Like you can’t take one more step
Just take my hand, together we can do it
I’m gonna love you through it.
- Martina Mcbridge "I'm going to love you through it"
Alright so that was a long introduction of sorts (more like ramblings). I believe were I last left off it was around Nov 13. She had just enjoyed a weekend of going out to eat with Mami on Friday. Saturday Papi and Isa went to the movies. Sunday was back to the hospital for the 3rd round of chemo. Although Ivey took her on Sunday to get her admitted, its one of the hardest car rides. Both for Ivey and Isabel its back to the battle grounds. Time to gear up for another assault. The Warrior Princess duty beckons for her. With much trepidation Isabel got out the car, knowing that the poking and prodding and interuppted sleep was about to begin. It is kind of funny in a non funny way. Before she is admitted waiting in the room she can be smiling and joking around. As soon as she even senses their about to put her port needle back in she tenses up. Like the Warrior that she is she carefully eyes the doctor getting the things ready to put her port tube back in. She also seems to get a low growl, warning him to proceed with caution. They always try and joke with her and try to get here to ease up, but that is beyond futile. Eventually one of us will just say in the infamous words of Nike "Just Do It". Fast or slow she will not like them putting the port in and taping her up. Actually I think the thought of the tape gets her more worked up then the actually prick of the port needle. But no more than 10 mins later she is back to smiling or joking.
The rest of the week was pretty standard for this set up chemo cocktail they have lined up. Every other day like monday, wednesday, and friday she gets her lumbar injection. Sunday started the heavy duty drug (MTX is the short name). The rest of the days she got some of the other medicines. The MTX drug is the one that really makes her white blood counts drop after about a week of her receiving the drug. Also its the one where they have to check her urine to see that the levels are dropping enough. Its the only one they give her that they have to make sure its almost out her system before they can discharge her. As the title said this is our new "norm". We have the schedule down somewhat. We can navigate the entire hospital like a tour guide lol. Even starting to recognize the nurses, tech, doctors, and other hospital employees in the hallways. Also Isabel has had enough of the food they serve here at Children's hospital. Now it could be because with chemo your senses can heighten for smell and taste. Its similiar to a pregnant woman who has had a dog all her life. Than one day wakes up and can't stand the smell of him. So basically she doesnt like any of the food they serve her. To back up her food critique it really isn't that good at all. I've taken to eating some of her lunches and breakfast to not let it go to waste. Some of the food actually reminds me of elementary school. Probably only kids of the 80s & 90s would be able to digest it lol. It gets annoying when we have to get explained every time about her lumbar injection prodecure. Like they ask the same questions every single time. I get it they have to cover themselves since we love to sue in this country. But when your child has literally gone to close to 10.................yeah i think i get the jest of the whole set up. I mean their needs to be a way where they look at her chart and it shows she has had it done so many times. Do I have to be asked every single time she gets anesthesia how she reacts to it. Hmm probably the same way she reacted not even 2 days ago smh (shaking my head).
But back to Miss Isabel who has done great this week with all the medicines. Her spirits are wonderful as usual. The one thing I do think she actually has enjoyed throughout all of this. Is the arts & craft room. Its almost the size of a elementary class room and is just full of fun stuff to do. You name it they probably have it for the kids to do. They always have at least two very friendly ladies to help the kids with what ever their artistic side wants to do. Only thing I think their missing in their is some kinda of calm soothing music. But Isabel has had a ball painting, coloring, coloring her own playdoh, making mask, etc. I would go into more detail if i could remember, but there was only two things that really stood out for me. It shows you perfectly how you can't get to up or to down. On Thursday I believe they had told us that at the rate Isabel was getting rid of the MTX drug in her system, that it looked like she could go home a day earlier. So instead of her getting out that Saturday, it was looking now like she would get to be home Friday, November 18. To put the icing on the cake the doctor had told Ivey, her next two rounds of chemo were going to be shorter as far as the hospital stay was concerned. Also that her white blood counts wouldn't drop as low. This was awesome news she was going to get to go home earlier than expected and have an easier next two rounds. But alas such euphoric feelings can only last but so long. The next day she had another Lumbar injection. Pretty standard day what I was waiting on was to hear the numbers about the level of MTX in her system. Think he had to be something like .02 for her to be able to be discharged. Well she came in at like .014 Yay time to go home.
I started packing up her room, all we had to do was wait on the discharge paper so in about a hour or so we would be going home. Mind you this is around say 11am-12pm. I figured great I can take Isabel home she can nap and rest up. Finally get to enjoy a weekend home. but like the mean kid in school who would flick you in your ears when you weren't paying attention. The nurse comes in and says that she needed to take one last drug through her IV that would take 2 hrs. A slight inconvience but nothing to bad. Just more time to pack up get the stuff in the car. Well that would have been a swell ending to the day, nevertheless in comes the doctor to go over some of the discharge instructions. It was mainly the same thing from the last times. However she brought up that she had misspoken the previous day. The next two rounds would not be the shorter easier, on the contrary. They were the two longer rounds of the chemo treatments. Instead of being in the hospital about 6-7 days, we would now be looking at a stay of about 16 days. That just took the air right out of me. I nodded my head and understood the aspect of why this one would take longer, as far as the different drugs their introducing. How they needed to keep her in there the whole time until her counts droped than came back up. How like a week or so into it they would give her the MTX (the at least week long one). I understood it all without problem. But what I wasn't ready for was how that was like the complete opposite of what we were told yesterday. Talk about a 180 were talking about a stay 3 times longer. Also the schedule for when she started had her end time a little before Christmas. You get so excited to finally think your getting a bit of break relative to all her other stays. But nope as the story must be written this journey will neither be easy, short, or predictable. But the time had come again to leave the hospital. At least I could hold on to the fact that Isabel was so happy to go home. That as I started in one of the first updates. If she leaves the hospital each time smiling that is all that matters. And as is our tradition when we leave the hospital I had Isa take a picture giving "deuces" to the hospital. Like the ending of a battle scene in a movie. Are warrior princess having once again came through to defeat this round, rested her head down and drifted off to sleep as we drove away from the hospital.
So this basically covered the events from like Nov 13-Nov 18. I will say that hearing the doctor say that Isabel could be in the hosptial as long as the first time which was like 18-19 days. That really was a big downer, 6-7 days was already taxing but to double it would take some preparation. So we do what we need to do and start planning on what we need to get ready for are next long extended stay. The light at the end of the tunnel was Christmas. Even with the longer treatment they were talking about Isabel would still be home to enjoy it. Also her counts would still be high so their would be less worry about having to come back to the hospital. I would go on to do the update for the following week. But I gotta think about it some more to actually remember all the little details I can. But as a lot of you have seen from previous photo updates Isabel is smiling brightly as ever. Gotten pretty darn good at dominoes as well, she must be Caribbean. To this day I sometimes wake up in the hospital and am shocked to be there. Like my Tia Cristina (Warrior Queen, battling her second bout of cancer herself) told me "Sometimes I wake up and just say oh crap I have cancer", and that's exactly how it feels when things slow down you actually remember holy crap this is real. Maybe the movie the Matrix was on to something. Would we really be able to value or appreciate this life we had if we didn't have to endure tough times, pain, hurting, loss. So I'll end it with this
Sincerely yours:
Father of the Warrior Princess
First off gotta apologize for such a long gap in updates. Its been so busy between the hospital and work. It seems by the time I get to put my feet up I'm completely wiped out. Also through all of this the concept of time is completely messed up. You never really know what day it is you kinda are just working off when you have to be at work or hospital. My calendar is like the "cancer calendar" as opposed to say the Mayan calendar. You based things off when she is having what procedure, or under going chemo, or when she will have low white blood counts, when she's ok to actually venture outside for a bit. Time is a blur right now really. At the hospital days can seem like an eternity or they can go by in a flash. One minute your sitting there just kinda taking in the day. Mentally going over things you need to do or just putting your mind at ease. But most of the time you can't really plan to have time to relax. But that is a mere drop of water in the ocean that is what Isabel is going through. I can't bring myself to outwardly complain about anything these days. It feels like why do i need to complain for the sake of hearing myself complain. When Isabel now complains about a pain or ache, its dealt with a bit more seriously. It could be an infection or it could be nothing. No more putting off calling the doctors until the next day. Things have to always be taken seriously even if you think its nothing.
But in all honestly like the saying goes "their is no rest for the weary". If its not physically tired, its mentally or emotionally drained. How Isabel keeps that radiate smile most of the time is beyond me. The nurses all love her for that very thing. It has to be hard on anyone to see a sick child period. But at least you get a small amount of comfort that they can still smile or laugh. That's why I try to capture a picture of her smiling everyday. When she isn't feeling good I look at that smile, the twinkle in her eye and that some how gets me by for another moment. But as a parent if your not with her your thinking about her. Sometimes its hard to have silent moments, cause you don't want your thoughts to wander to far. Your constantly trying to repeat positive mantras to yourself. You believe everything will be alright, you trust in your heart she will be ok. So you just try to shake any negative thought out of your head. However hard you try though there will be that one random moment where it just hits you like a tidal wave. Recently I had to delivery some chairs we had done for this hotel out in Delaware. So I'm driving down 95 just kinda jamming to local stations. Isabel was home at that point so I was happy about that. As I get further out and lose the local stations I just start scanning the radio to pick up a station. As I come up to the next station the tune initially catches my ear. Had a nice mellow sound even if it was country lol. I always joke with my step mom that I do actually like some country these days. But she always has to remind me how when I was 13, I would get upset if she tried to make me listen to it in the car lol. But back to me driving up 95 in are box truck heading to Delaware flipping thru stations and I stop on probably the 3rd country station I heard. I thought I heard the word cancer, but thought it was just in my head. Than I start listening to the words. When she said this one particular line I just busted out crying out of no where. It was the chorus I heard the words let it really sink in and there goes the water works. Guess crying can help cleanse the soul (or as they say so guys feel better about crying lol).
Chorus:
When you’re weak, I’ll be strong
When you let go, I’ll hold on
When you need to cry, I swear that I’ll be there to dry your eyes
When you feel lost and scared to death,
Like you can’t take one more step
Just take my hand, together we can do it
I’m gonna love you through it.
- Martina Mcbridge "I'm going to love you through it"
Alright so that was a long introduction of sorts (more like ramblings). I believe were I last left off it was around Nov 13. She had just enjoyed a weekend of going out to eat with Mami on Friday. Saturday Papi and Isa went to the movies. Sunday was back to the hospital for the 3rd round of chemo. Although Ivey took her on Sunday to get her admitted, its one of the hardest car rides. Both for Ivey and Isabel its back to the battle grounds. Time to gear up for another assault. The Warrior Princess duty beckons for her. With much trepidation Isabel got out the car, knowing that the poking and prodding and interuppted sleep was about to begin. It is kind of funny in a non funny way. Before she is admitted waiting in the room she can be smiling and joking around. As soon as she even senses their about to put her port needle back in she tenses up. Like the Warrior that she is she carefully eyes the doctor getting the things ready to put her port tube back in. She also seems to get a low growl, warning him to proceed with caution. They always try and joke with her and try to get here to ease up, but that is beyond futile. Eventually one of us will just say in the infamous words of Nike "Just Do It". Fast or slow she will not like them putting the port in and taping her up. Actually I think the thought of the tape gets her more worked up then the actually prick of the port needle. But no more than 10 mins later she is back to smiling or joking.
The rest of the week was pretty standard for this set up chemo cocktail they have lined up. Every other day like monday, wednesday, and friday she gets her lumbar injection. Sunday started the heavy duty drug (MTX is the short name). The rest of the days she got some of the other medicines. The MTX drug is the one that really makes her white blood counts drop after about a week of her receiving the drug. Also its the one where they have to check her urine to see that the levels are dropping enough. Its the only one they give her that they have to make sure its almost out her system before they can discharge her. As the title said this is our new "norm". We have the schedule down somewhat. We can navigate the entire hospital like a tour guide lol. Even starting to recognize the nurses, tech, doctors, and other hospital employees in the hallways. Also Isabel has had enough of the food they serve here at Children's hospital. Now it could be because with chemo your senses can heighten for smell and taste. Its similiar to a pregnant woman who has had a dog all her life. Than one day wakes up and can't stand the smell of him. So basically she doesnt like any of the food they serve her. To back up her food critique it really isn't that good at all. I've taken to eating some of her lunches and breakfast to not let it go to waste. Some of the food actually reminds me of elementary school. Probably only kids of the 80s & 90s would be able to digest it lol. It gets annoying when we have to get explained every time about her lumbar injection prodecure. Like they ask the same questions every single time. I get it they have to cover themselves since we love to sue in this country. But when your child has literally gone to close to 10.................yeah i think i get the jest of the whole set up. I mean their needs to be a way where they look at her chart and it shows she has had it done so many times. Do I have to be asked every single time she gets anesthesia how she reacts to it. Hmm probably the same way she reacted not even 2 days ago smh (shaking my head).
But back to Miss Isabel who has done great this week with all the medicines. Her spirits are wonderful as usual. The one thing I do think she actually has enjoyed throughout all of this. Is the arts & craft room. Its almost the size of a elementary class room and is just full of fun stuff to do. You name it they probably have it for the kids to do. They always have at least two very friendly ladies to help the kids with what ever their artistic side wants to do. Only thing I think their missing in their is some kinda of calm soothing music. But Isabel has had a ball painting, coloring, coloring her own playdoh, making mask, etc. I would go into more detail if i could remember, but there was only two things that really stood out for me. It shows you perfectly how you can't get to up or to down. On Thursday I believe they had told us that at the rate Isabel was getting rid of the MTX drug in her system, that it looked like she could go home a day earlier. So instead of her getting out that Saturday, it was looking now like she would get to be home Friday, November 18. To put the icing on the cake the doctor had told Ivey, her next two rounds of chemo were going to be shorter as far as the hospital stay was concerned. Also that her white blood counts wouldn't drop as low. This was awesome news she was going to get to go home earlier than expected and have an easier next two rounds. But alas such euphoric feelings can only last but so long. The next day she had another Lumbar injection. Pretty standard day what I was waiting on was to hear the numbers about the level of MTX in her system. Think he had to be something like .02 for her to be able to be discharged. Well she came in at like .014 Yay time to go home.
I started packing up her room, all we had to do was wait on the discharge paper so in about a hour or so we would be going home. Mind you this is around say 11am-12pm. I figured great I can take Isabel home she can nap and rest up. Finally get to enjoy a weekend home. but like the mean kid in school who would flick you in your ears when you weren't paying attention. The nurse comes in and says that she needed to take one last drug through her IV that would take 2 hrs. A slight inconvience but nothing to bad. Just more time to pack up get the stuff in the car. Well that would have been a swell ending to the day, nevertheless in comes the doctor to go over some of the discharge instructions. It was mainly the same thing from the last times. However she brought up that she had misspoken the previous day. The next two rounds would not be the shorter easier, on the contrary. They were the two longer rounds of the chemo treatments. Instead of being in the hospital about 6-7 days, we would now be looking at a stay of about 16 days. That just took the air right out of me. I nodded my head and understood the aspect of why this one would take longer, as far as the different drugs their introducing. How they needed to keep her in there the whole time until her counts droped than came back up. How like a week or so into it they would give her the MTX (the at least week long one). I understood it all without problem. But what I wasn't ready for was how that was like the complete opposite of what we were told yesterday. Talk about a 180 were talking about a stay 3 times longer. Also the schedule for when she started had her end time a little before Christmas. You get so excited to finally think your getting a bit of break relative to all her other stays. But nope as the story must be written this journey will neither be easy, short, or predictable. But the time had come again to leave the hospital. At least I could hold on to the fact that Isabel was so happy to go home. That as I started in one of the first updates. If she leaves the hospital each time smiling that is all that matters. And as is our tradition when we leave the hospital I had Isa take a picture giving "deuces" to the hospital. Like the ending of a battle scene in a movie. Are warrior princess having once again came through to defeat this round, rested her head down and drifted off to sleep as we drove away from the hospital.
So this basically covered the events from like Nov 13-Nov 18. I will say that hearing the doctor say that Isabel could be in the hosptial as long as the first time which was like 18-19 days. That really was a big downer, 6-7 days was already taxing but to double it would take some preparation. So we do what we need to do and start planning on what we need to get ready for are next long extended stay. The light at the end of the tunnel was Christmas. Even with the longer treatment they were talking about Isabel would still be home to enjoy it. Also her counts would still be high so their would be less worry about having to come back to the hospital. I would go on to do the update for the following week. But I gotta think about it some more to actually remember all the little details I can. But as a lot of you have seen from previous photo updates Isabel is smiling brightly as ever. Gotten pretty darn good at dominoes as well, she must be Caribbean. To this day I sometimes wake up in the hospital and am shocked to be there. Like my Tia Cristina (Warrior Queen, battling her second bout of cancer herself) told me "Sometimes I wake up and just say oh crap I have cancer", and that's exactly how it feels when things slow down you actually remember holy crap this is real. Maybe the movie the Matrix was on to something. Would we really be able to value or appreciate this life we had if we didn't have to endure tough times, pain, hurting, loss. So I'll end it with this
Pain is a gift. Humanity, without pain, would know neither fear nor pity.
Without fear, there could be no humility, and every man would be a monster.
The recognition of pain and fear in others gives rise in us to pity, and in our pity is our humanity, our redemption. -
Dean KoontzSincerely yours:
Father of the Warrior Princess
Aldo Alejandro Santiesteban III
Chronicles of the Warrior Princess: Sunny days are here again (Update from 11/14)
Greetings and Salutations,
But let's continue with what can only be described as the moment after a hurricane hit, and you see that first glimpse of sunshine again. To say that Isabel was acting like her former super happy self was an understatement. It seemed that being home indeed recharged her angelic energy. She just brightened up the house. All who came over couldn't help just smile the whole time they were around her. She was on constant joke time., making funny faces, dancing, singing, doing silly voices, and my new favorite (disclaimer: Isabel does not watch Jersey Shore) doing the "YEAH BUDDY" like Pauly D. I sat there in awe at times with how well she was taking all of this. I know it would be easier to explain it by saying that she is only 4 1/2 and doesn't really grasp how serious it is. But that would be underestimating Isabel, and I have learned that doing that, would be quite foolish. Hmm on second thought that sentence might come back to haunt me when Isabel is a teenager. I can hear it now................Papi why can't I do that, when I was four you said never underestimate me........................I'm 16 i'm an adult lol. But that will be a welcome argument over the ones now about letting me take the bandages off.
I would love to sit here and go over the joys of each and every day. But honestly they almost merged into one positive, soul reviving, laughter for the mind, ease of stress- day. Isabel got to go out to eat. please bare in mind, that her mother obliged with tremendous trepidation lol. But she took the proper precautions and had her wear a mask, brought hand sanitizer, and had Clorox disinfecting wipes for the tables. Although Isabel didn't have much of an appetite for Mexican that night, never the less she was excited to be out of the house. She welcomed a play date with her "favorite" cousin Ty ty and her only female cousin on my side Lily. This was on Saturday October 12, a week from when we were sitting in the hospital worrying, and fearsome that any day we would have to rush her back to the hospital because of a fever.
On that note we did have one day of brief panic. It was Wednesday and I was spending the day with Isabel. The morning went off without much fanfare. When I got to Ivey's house I chilled in the basement while I waited for Isabel to wake up. This was about 8:30.............hours passed and Isabel was still knocked out. Around 10:00am I woke her to let her know Papi was there, also to check her temperature. It read 99.2 nothing to worry about so I went back downstairs and watched some TV. Another an hour or so later she was still asleep. Just as I was about to go back upstairs to check on her, I heard her in the bathroom. Finally she woke up I was getting antsy from wanting to enjoy her company. I had her go brush her teeth and when I was giving her the toothbrush, I felt her and she felt kinda warm. I took her temperature and it read 101.5 (S***), I knew what that meant straight.... to the ER. I started going into action like it was a pregnancy and her water had broke lolpre prepared suitcase... check, snacks and games.....check, arts and crafts.......check, my messenger bag with laptop.....check. As I gathered everything by the door I went and got another thermometer, this one looked a bit more expensive. Oh by the way during all this I had called Ivey, and started the conversation in the most calming and reassuring way. Me: "Call the hospital now we need to rush Isabel NOW.......................oh BTW its just cause she has a fever and the chart says she needs to go right now" lmao. So it did take a minute to calm her down after my initial blow to her day. I explained that she was acting normal and had just woken up and I took her temp and it was 101.5. She asked how did it shoot up so much when just a couple hours ago it was relatively normal. Maybe I had a bad reading since she was half asleep and the thermometer wasn't all the way under her tongue I guessed. So I had her call the cancer ward to give them a heads up like we had been instructed to do. Luckily like all things medicine she had to wait. The line kept ringing and she couldn't get a hold of someone. She called me back in a half panic and asked what should we do, go straight to ER or try and get a hold of the cancer clinic to see what they say. I told her I was about to check her temp again but to call and let them know the situation. So here I am in a calm panic and having worked up Ivey who was frantically calling the hospital. No more then 2 mins after I get off the phone with her and go over to check Isabel's temp. I got a huge sigh of relief the thermometer now read 100.2. I did a double take clearly I was getting a another bad reading. So I proceeded to check it 3 more times. They all came back the same 100.2. Fairly soon after I concluded that the other thermometer (the cheaper one) was giving me an inaccurate reading. No way could her fever have come down 1.3 degrees within half an hours time. As I called back Ivey, I was able to start the convo a little more pleasant this time. "Stop calling the hospital..............were at 100.2 it was a false alarm.................and yes I took her temp 4 times lol". We both agreed to wait an hour and see where we were at. I'm happy to say that the rest of the day went off without any more scares. Isabel and I got to enjoy playing dominoes and doing her homework. Of course while watching sponge bob (always on the tv) square pants.
Fast forward to Saturday and Papi and Isa got to go out on a date and go to the movies. Isabel couldn't have been more excited that we were going to the movies to see Puss n Boots. She had a glow since that was one of our things me and her always go to the movies. One of the reasons I really loved having a kid was that I had an excuse to see cartoon movies lol. This time was a bit different, Isabel had to wear a mask, especially going to a crowded place like the downtown Silver Spring movie theater. What I did to hide it a bit was I wrapped her scarf around her mouth as to hide her medical mask. Didn't want to make it so obvious. As we sat in the theater I got to lift the arm rest so that she could lay on me to watch the movie. I can't lie I started to tear up thinking about how this is our Papi and Isabel thing. We had been going to the movies just me and her since she was a baby, and right there i started to tear up and get really emotional. It just hit me how glad I was to have her next to me with such a level of excitement to be out at the movie theater. I started to replay the last month. The long hours at the hospital, the impossible nights of trying to catch up on sleep, the pain she had endured; it all came crashing down on me, the severity of it all. Just when I was letting it sink in too much, Isabel leans over and gives me a kiss on the check and tells me "Papi I love you". Just like that she snapped me out of my brief moment of sorrow. Although each week seems to be repetitive, its moments like that which get you by. Its those small 30 secs of time that can refocus you. Just the smallest glimmer of happiness in your kids eyes lets you know that you can get through this. Even with each passing day, more and more of her hair falling out, she could still make a joke about it. How could a 4 yr old be able to deal with this with such zest? Where did we as adults lose this ever lasting half full attitude? How could I help her hold on to that for as many years as possible? Simple, sometimes its ok to act silly and be like a kid, just have fun every once in a while, not because you schedule, but because its ok to just not think at times and just have fun.
When we last left off, Isabel was home and it was Saturday, October 5. The one thing left off from the last update was leading up to her discharge at the hospital. This struck me just now as we sit in the hospital room again, after seeing the same nurse. Nurse Neil, a portly British fellow with a great sense of humor, always with a smile on his face. He has a very warm and caring presence. We always enjoy when he is Isabel's nurse, plus how can you not like a British accent?! Anyways we were sitting in the room waiting on some medicine to flush out her port so we could take it out and go home, Neil looked at Ivey's facial expression and sat next to her and asked "what's on your mind?". She told him that all she could do was worry that the same thing would happen. They would go home, get comfortable, have Isabel in good spirits, only for her to get a fever and end up right back in the hospital. He tried to reassure Ivey that Isabel needed to go home, and that they wouldn't discharge her if they thought she would be right back in the hospital. Going home is essential in order to fully recharge physically and mentally. Another thing to remember is that when Isabel came in last week, her white blood counts were 0. As we stood there on this Saturday evening, Isabel's white blood counts were above normal levels! So the immune system was like a rested army ready to storm the beach per say lol. Ivey and me sat and talked after Neal left, we basically concluded the same thing, just gotta take it day by day. Enjoy the times that Isabel is happy and smiling; it's all we can really do, just have to keep telling ourselves that. It was getting increasingly difficult with each new hospital visit, the daily reminder that our Isabel really does have Cancer. The thinning of her hair so quickly was another glaring reminder that the fight was indeed on.
But let's continue with what can only be described as the moment after a hurricane hit, and you see that first glimpse of sunshine again. To say that Isabel was acting like her former super happy self was an understatement. It seemed that being home indeed recharged her angelic energy. She just brightened up the house. All who came over couldn't help just smile the whole time they were around her. She was on constant joke time., making funny faces, dancing, singing, doing silly voices, and my new favorite (disclaimer: Isabel does not watch Jersey Shore) doing the "YEAH BUDDY" like Pauly D. I sat there in awe at times with how well she was taking all of this. I know it would be easier to explain it by saying that she is only 4 1/2 and doesn't really grasp how serious it is. But that would be underestimating Isabel, and I have learned that doing that, would be quite foolish. Hmm on second thought that sentence might come back to haunt me when Isabel is a teenager. I can hear it now................Papi why can't I do that, when I was four you said never underestimate me........................I'm 16 i'm an adult lol. But that will be a welcome argument over the ones now about letting me take the bandages off.
I would love to sit here and go over the joys of each and every day. But honestly they almost merged into one positive, soul reviving, laughter for the mind, ease of stress- day. Isabel got to go out to eat. please bare in mind, that her mother obliged with tremendous trepidation lol. But she took the proper precautions and had her wear a mask, brought hand sanitizer, and had Clorox disinfecting wipes for the tables. Although Isabel didn't have much of an appetite for Mexican that night, never the less she was excited to be out of the house. She welcomed a play date with her "favorite" cousin Ty ty and her only female cousin on my side Lily. This was on Saturday October 12, a week from when we were sitting in the hospital worrying, and fearsome that any day we would have to rush her back to the hospital because of a fever.
On that note we did have one day of brief panic. It was Wednesday and I was spending the day with Isabel. The morning went off without much fanfare. When I got to Ivey's house I chilled in the basement while I waited for Isabel to wake up. This was about 8:30.............hours passed and Isabel was still knocked out. Around 10:00am I woke her to let her know Papi was there, also to check her temperature. It read 99.2 nothing to worry about so I went back downstairs and watched some TV. Another an hour or so later she was still asleep. Just as I was about to go back upstairs to check on her, I heard her in the bathroom. Finally she woke up I was getting antsy from wanting to enjoy her company. I had her go brush her teeth and when I was giving her the toothbrush, I felt her and she felt kinda warm. I took her temperature and it read 101.5 (S***), I knew what that meant straight.... to the ER. I started going into action like it was a pregnancy and her water had broke lolpre prepared suitcase... check, snacks and games.....check, arts and crafts.......check, my messenger bag with laptop.....check. As I gathered everything by the door I went and got another thermometer, this one looked a bit more expensive. Oh by the way during all this I had called Ivey, and started the conversation in the most calming and reassuring way. Me: "Call the hospital now we need to rush Isabel NOW.......................oh BTW its just cause she has a fever and the chart says she needs to go right now" lmao. So it did take a minute to calm her down after my initial blow to her day. I explained that she was acting normal and had just woken up and I took her temp and it was 101.5. She asked how did it shoot up so much when just a couple hours ago it was relatively normal. Maybe I had a bad reading since she was half asleep and the thermometer wasn't all the way under her tongue I guessed. So I had her call the cancer ward to give them a heads up like we had been instructed to do. Luckily like all things medicine she had to wait. The line kept ringing and she couldn't get a hold of someone. She called me back in a half panic and asked what should we do, go straight to ER or try and get a hold of the cancer clinic to see what they say. I told her I was about to check her temp again but to call and let them know the situation. So here I am in a calm panic and having worked up Ivey who was frantically calling the hospital. No more then 2 mins after I get off the phone with her and go over to check Isabel's temp. I got a huge sigh of relief the thermometer now read 100.2. I did a double take clearly I was getting a another bad reading. So I proceeded to check it 3 more times. They all came back the same 100.2. Fairly soon after I concluded that the other thermometer (the cheaper one) was giving me an inaccurate reading. No way could her fever have come down 1.3 degrees within half an hours time. As I called back Ivey, I was able to start the convo a little more pleasant this time. "Stop calling the hospital..............were at 100.2 it was a false alarm.................and yes I took her temp 4 times lol". We both agreed to wait an hour and see where we were at. I'm happy to say that the rest of the day went off without any more scares. Isabel and I got to enjoy playing dominoes and doing her homework. Of course while watching sponge bob (always on the tv) square pants.
Fast forward to Saturday and Papi and Isa got to go out on a date and go to the movies. Isabel couldn't have been more excited that we were going to the movies to see Puss n Boots. She had a glow since that was one of our things me and her always go to the movies. One of the reasons I really loved having a kid was that I had an excuse to see cartoon movies lol. This time was a bit different, Isabel had to wear a mask, especially going to a crowded place like the downtown Silver Spring movie theater. What I did to hide it a bit was I wrapped her scarf around her mouth as to hide her medical mask. Didn't want to make it so obvious. As we sat in the theater I got to lift the arm rest so that she could lay on me to watch the movie. I can't lie I started to tear up thinking about how this is our Papi and Isabel thing. We had been going to the movies just me and her since she was a baby, and right there i started to tear up and get really emotional. It just hit me how glad I was to have her next to me with such a level of excitement to be out at the movie theater. I started to replay the last month. The long hours at the hospital, the impossible nights of trying to catch up on sleep, the pain she had endured; it all came crashing down on me, the severity of it all. Just when I was letting it sink in too much, Isabel leans over and gives me a kiss on the check and tells me "Papi I love you". Just like that she snapped me out of my brief moment of sorrow. Although each week seems to be repetitive, its moments like that which get you by. Its those small 30 secs of time that can refocus you. Just the smallest glimmer of happiness in your kids eyes lets you know that you can get through this. Even with each passing day, more and more of her hair falling out, she could still make a joke about it. How could a 4 yr old be able to deal with this with such zest? Where did we as adults lose this ever lasting half full attitude? How could I help her hold on to that for as many years as possible? Simple, sometimes its ok to act silly and be like a kid, just have fun every once in a while, not because you schedule, but because its ok to just not think at times and just have fun.
"The happiness of life is made up of minute fractions? The little, soon forgotten charities of a kiss or smile, a kind look, a heartfelt compliment, and the countless infinitesimals of pleasurable and genial feeling."
Samuel Taylor Coleridge
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