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
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