Welcome back all. This will have been the 6th installment of the updates for Isabel. I know they are coming fewer and longer in between. But work again has picked up so I tend to forget to sit down and let out my thoughts. I've finally figured out how to more efficiently send out mass emails. All this time I should have created a "list" from my contacts. Makes life a heck of a lot easier. That way I don't forget to add anyone. Again if you would like me to add anyone to the distribution list. Just shoot me an email and I'll add them to the list. This is a story I don't mind telling or sharing. Sometimes the hardest thing to talk about are the ones that can inspire the most. As a friend told me.....sometimes god brings those closest who he wants to hear talk to him. Anybody that really knows me I'm not the most religious person. I won't sit here and front and say this will lead me to church. But I'm glad that their are strong believers and church going people supporting Isabel and sending her that love. So this is the update from 10/30-11/5. And yes the title is battle with fire breathing dragon (know its not Papi's bad breath lol). So on to the update. The euphoria we felt when Isabel was walking herself out her room with a smile like a Chester cat was priceless. It was one of those made for a MasterCard commercial. Even the bleak drab hospital hallways looked a bit more cheerful, as we strolled out the hospital like we had won this round. For you see when you can walk out and have a cancer patient smiling and joking its always a win. So as we loaded Isa in her Mami's car I snapped a shot telling Isabel "every time we leave the hospital you gotta throw up the deuces lol" that's the piece sign for clarification. I took my camera pic and set it instantly as my screen saver on my phone, and went on my way. As I drove home that night I almost didn't know what to do with myself. Rest yeah there was that, but I feared I had gotten to use to something beeping. How was I to sleep with no nurse coming in every 2 hours. If it wasn't the nurse it was the tech checking vitals, if not the tech the housekeeping. I got good at faking I was awake when a nurse or tech would come in if they needed to ask me a question. So there I was laying in bed not able to sleep, all I could think about was how Isa would do her first night HOME. Eventually I think around 2-3 i was able to doze off. First thing in the morning texted Ivey to see how are little Warrior Princess was doing. To my surprise she woke up the house wanting to play and for a lack of a better word being "Isa". Nothing could have started my Sunday off any better. I was planning on visiting after the Redskins game. Silly me though I fooled myself to thinking that Isa's positivity would transfer to them lmao. Such was not the case and the ended up getting shut out 23-0 (Ouch). So as the game wrapped up I was getting ready to make my way over to catch some rays of my sunshine. But this is where the story takes a turn and the story tale begins. When I called Ivey to tell her that I was getting ready to head over, she said wait she has a fever. Huh she was just so happy she just came out the hospital, a fever already. Just to back track a little bit when we were in the hospital when we were being discharged they gave us a set of guidelines. Things to look out for and the number one thing was fevers. For that could be a sign of a more serious infection. They even gave us a range that was considered low grade, which would just require monitoring. Or the high grade believe anything above 101 warrants an immediate trip to the hospital. So back to Sunday night. Ivey calls me and says Isa's temp is 101.5. My heart just sank because I knew what that meant........back to the kids hospital. But I asked if she took it twice. In a restrained panic voice Ivey said "Yes I checked it 3 times". I told her my famous words "calm down", call the ER to let them know a cancer patient is coming and lets get there. See when a child is under going chemo they get "VIP" treatment cause its a safety risk to have them waiting in the waiting room. So as soon as we got there we got put into a room. Here comes the dreaded part they had to place her port back in. Which meant Isa was once against faced with her mortal enemy adhesive bandages. Add to the fact that she was upset and sad she had to come back to the very same place she just left less then 24 hrs ago. We all were trying to come to grips with it. But in the back of my head I was still calm figuring they would check her give her some medicine and send us home. This my friends is where the villain of this story came into play. The mighty fire breathing dragon aka fever. And he was intending on staying for alot longer then we bargained for. When the nurse came back and said that she had to be in the hospital for 48 hours after they took her blood culture. Ivey and I'sa lot of checked temps every hour and cold wash clothes on the head. Also while this was going down they were updating us on her white blood counts we were only at 300. So in our minds it like great here goes the week and weekend most likely. But we still held out hope it would spike back up to normal levels and she could get back to being at home. So back to the day to day worry. Every time that beep of the thermometer went off we eagerly awaited the results. "38.3" Ok and that means what in F........another spiking of the fever. Yay just what we wanted two more days of hospital food and listening to TV through basically a big remote. Isa though she made the most of it. She was doing a bit of homework (writing letters, coloring, paint by numbers & the memory game) and save the best for last puzzles. But the one thing she loved most during her stay was playing dominoes. To be truthful she beat me straight up. I want to fib and say I did the daddy move and ease up let her get a few games. Such was not the case she beat me without me holding back. So finally by Thursday we started hearing better news. Her white blood count is 1200, such a vast improvement. But they still want to have her counts be higher to go home. With that news we relaxed a bit more thinking to ourselves tomorrow could be the day she goes back home. So Friday morning when I awake to the doctors telling us that her white blood count was 2,200. The tension just lifted right out the room. We knew that she could fight that fever and be ready to be home. I would go on about the hospital visit, but it was a boring week in that wasn't much procedures. Just blood drawn from the port and a medicine here and there. So I'll leave you with this. Our Isabel Princes Warrior had finally slayed the dragon. And her support group couldn't be happy to have her going back home Saturday October 4, 2011. Who else would boss the girls at Ivey's house lol. So it was a hectic week since both our jobs had picked up, but we got thru it with Isabel still smiling. These are the days of our lives...........that one was for the soap fans lol. So once again thank you everybody for the support, prayers, and positive thoughts. Their always welcome and appreciated. Isa is home and loving it. Look not mournfully into the past, it comes not back again. Wisely improve the present, it is thine. Go forth to meet the shadowy future without fear and with a manly heart.
Sincerely grateful
Aldo A Santiesteban III
Monday, December 12, 2011
Chronicles of the Warrior Princess (Update from 11/2)
They say that its better late then never. So here goes the update for the week of Oct 24-30. It has become a little difficult juggling everything right now. Between being at the hospital and working now. By the time I get a moment to sit down I usually just want to kinda just lounge and rest my mind. Which can include reading up on football or celebrity gossip. Each doesn't require me to use much thought. I have fallen in love with music again going through all this. Nothing can get me relaxed through this or let me let out some energy when I need too. Its a very powerful effect and glad my IPOD is fully stocked and Pandora was invented. But anyways enough about me on to the feature presentation. Our Warrior Princess.................
So this was the week she was going to start her second round of Chemo. The first cycle they started her off with 3 drugs, plus the three in her lumbar injection. She hadn't really had any side effects from that cycle of chemo. I think maybe a few small ones but nothing out the ordinary from her being regularly sick. But it was indeed going to be a very busy and tiring week. She was scheduled for a lumbar injection Monday, Wednesday & Friday. As well as having a different Chemo drug everyday except Friday. So she was going to need a good amount of rest. Luckily they were giving her the steroid which helped her appetite. Having enough fuel to fight all that was about to transpire this week was essential. Food and sleep are so basic so simple, but are two of the most important aspects to overcoming sickness. Isabel has all the strength within that you could ask from our Warrior Princess. But she needed the mental and physical strength to work hand and hand as well. I would go into a day by day update but each day was basically the same. Just slight variations. On the days she had to get her lumbar injections (Monday, Wednesday, Friday) she couldn't eat anything from midnight the previous night until after her procedure. So she would wake up a bit cranky being hungry and not being able to eat till well after noon. But she would bear through it and request her menu when she was able to eat again. It usually involved something like chocolate milk fruit loops blue berry muffin yogurt & jello lol. The hard part about those days was calming her down before they would take her down to the OR. With this going on her 6th, 7th & 8th lumbar injection she knew the dance too well. And was growing tired of it. Its like having your favorite meal after about the 3 time in a row, you'd rather almost have McDonalds then to eat the same thing again. It just so happens in her instance it was going down to the OR having a bunch of doctors standing over you and asking you to stay calm. Isabel has a look on her face like a) who are you b) you try staying calm when you have to be taken to surgery & c) you try being pleasant when your starving. But after a while she just kinds of settles and calms down just enough before they put her down to sleep. When she awakes Mami or Papi is there to reassure her everything is ok. And remind her that she is a Warrior Princess and how brave she is. At this point all we can be is her motivational coaches. Nothing but rainbows, lollipops and unicorn power on this side. Guess were like the Care Bears now just trying to bring sunshine on a cloudy ugly day. Some days it works better then others. We then get to go back to the room and Isabel can finally eat and rest some more. And by evening she is back to smiling and her spirits are high again. When you have a child that can still be silly or smile or say something funny at the end of a day she gets her lumbar injection. Well reminds you to keep your feelings in check cause you need to be half as strong as she is showing to be. Sponge Bob has been her therapy throughout all this it lets her escape the hospital bed and room. Funny I never let her watch it before but now I'm glad she has that to distract her. Even though I can't say its the best kids show, does make me chuckle sometimes.
The other days when she just gets her other Chemo medicines go off with a lot less fanfare. She gets to rest more on those days. As she tells me "Papi
So all and all the week was pretty standard news wise. Except we knew on Saturday she was going to get discharged. Ivey and I actually had to sit for a moment and were in shock that 19 days would have passed since she had been in the hospital. The whole time has been a blur or just updates procedures and it was just like one long continuous day. But to hear that although she would have to come back for more treatments. and that her stay at the hospital wasn't entirely over, just the fact that she would get to sleep in her bed. Be in her house. And not have all these wires and tubes hooked up to her was a great sigh of relief. Add to that that Isabel was so happy and playful again we couldn't be anything but happy. You learn through all this to really take it day by day. If you look to ahead you will get a bit down, because you know their are going to be bad days ahead. But what use is it really to hone in on that. You think about it you know the reality that it will come. But in the mean time enjoy the happiness enjoy the silliness enjoy the jokes and laughter. Those memories is what will get us through when she has her sickest days. The memory of Isabel our Isabel the happy always a smile on her face Isa has to stay at the fore front of all this. Because if that's not what were fighting for their isn't much of a fight to give. I'm not rooting for the sick days, I'm not fighting to see her physically sick, that's not the Isabel I want to fight for. I will fight to have the Isabel everybody knows and loves back. That is an ideal worth never giving up for, never wavering in are absolute conviction that we will beat this. So she can live a long healthy life. And have a hell of a story to tell. I'm sure when she's a teenager she can even use to to make sure she gets that car she wants lol.
So again thank you everybody for your continued prayers, support, positive thoughts and energy. We have started a charity for Isa called Isabel's Warrior Princesses. More info will be coming about that soon. But for now we just wanted to establish it and get the name down. But this has shown us that more needs to be done for these little girls fighting through this ugly disease that wants to strip them of them femininity.
Our deepest fear is not that we are inadequate.
Our deepest fear is that we are powerful beyond measure.
It is our light, not our darkness that most frightens us.
Your playing small does not serve the world.
Aldo Alejandro Santiesteban III
There is nothing enlightened about shrinking
So that other people won't feel insecure around you.
We were all meant to shine, as children do.
It's not just in some of us; it's in everyone.
And as we let our own light shine,
We unconsciously give other people permission to do the same
As we are liberated from our own fear,
Our presence automatically liberates others.
Sincerely grateful
Aldo A Santiesteban III
So this was the week she was going to start her second round of Chemo. The first cycle they started her off with 3 drugs, plus the three in her lumbar injection. She hadn't really had any side effects from that cycle of chemo. I think maybe a few small ones but nothing out the ordinary from her being regularly sick. But it was indeed going to be a very busy and tiring week. She was scheduled for a lumbar injection Monday, Wednesday & Friday. As well as having a different Chemo drug everyday except Friday. So she was going to need a good amount of rest. Luckily they were giving her the steroid which helped her appetite. Having enough fuel to fight all that was about to transpire this week was essential. Food and sleep are so basic so simple, but are two of the most important aspects to overcoming sickness. Isabel has all the strength within that you could ask from our Warrior Princess. But she needed the mental and physical strength to work hand and hand as well. I would go into a day by day update but each day was basically the same. Just slight variations. On the days she had to get her lumbar injections (Monday, Wednesday, Friday) she couldn't eat anything from midnight the previous night until after her procedure. So she would wake up a bit cranky being hungry and not being able to eat till well after noon. But she would bear through it and request her menu when she was able to eat again. It usually involved something like chocolate milk fruit loops blue berry muffin yogurt & jello lol. The hard part about those days was calming her down before they would take her down to the OR. With this going on her 6th, 7th & 8th lumbar injection she knew the dance too well. And was growing tired of it. Its like having your favorite meal after about the 3 time in a row, you'd rather almost have McDonalds then to eat the same thing again. It just so happens in her instance it was going down to the OR having a bunch of doctors standing over you and asking you to stay calm. Isabel has a look on her face like a) who are you b) you try staying calm when you have to be taken to surgery & c) you try being pleasant when your starving. But after a while she just kinds of settles and calms down just enough before they put her down to sleep. When she awakes Mami or Papi is there to reassure her everything is ok. And remind her that she is a Warrior Princess and how brave she is. At this point all we can be is her motivational coaches. Nothing but rainbows, lollipops and unicorn power on this side. Guess were like the Care Bears now just trying to bring sunshine on a cloudy ugly day. Some days it works better then others. We then get to go back to the room and Isabel can finally eat and rest some more. And by evening she is back to smiling and her spirits are high again. When you have a child that can still be silly or smile or say something funny at the end of a day she gets her lumbar injection. Well reminds you to keep your feelings in check cause you need to be half as strong as she is showing to be. Sponge Bob has been her therapy throughout all this it lets her escape the hospital bed and room. Funny I never let her watch it before but now I'm glad she has that to distract her. Even though I can't say its the best kids show, does make me chuckle sometimes.
The other days when she just gets her other Chemo medicines go off with a lot less fanfare. She gets to rest more on those days. As she tells me "Papi
So all and all the week was pretty standard news wise. Except we knew on Saturday she was going to get discharged. Ivey and I actually had to sit for a moment and were in shock that 19 days would have passed since she had been in the hospital. The whole time has been a blur or just updates procedures and it was just like one long continuous day. But to hear that although she would have to come back for more treatments. and that her stay at the hospital wasn't entirely over, just the fact that she would get to sleep in her bed. Be in her house. And not have all these wires and tubes hooked up to her was a great sigh of relief. Add to that that Isabel was so happy and playful again we couldn't be anything but happy. You learn through all this to really take it day by day. If you look to ahead you will get a bit down, because you know their are going to be bad days ahead. But what use is it really to hone in on that. You think about it you know the reality that it will come. But in the mean time enjoy the happiness enjoy the silliness enjoy the jokes and laughter. Those memories is what will get us through when she has her sickest days. The memory of Isabel our Isabel the happy always a smile on her face Isa has to stay at the fore front of all this. Because if that's not what were fighting for their isn't much of a fight to give. I'm not rooting for the sick days, I'm not fighting to see her physically sick, that's not the Isabel I want to fight for. I will fight to have the Isabel everybody knows and loves back. That is an ideal worth never giving up for, never wavering in are absolute conviction that we will beat this. So she can live a long healthy life. And have a hell of a story to tell. I'm sure when she's a teenager she can even use to to make sure she gets that car she wants lol.
So again thank you everybody for your continued prayers, support, positive thoughts and energy. We have started a charity for Isa called Isabel's Warrior Princesses. More info will be coming about that soon. But for now we just wanted to establish it and get the name down. But this has shown us that more needs to be done for these little girls fighting through this ugly disease that wants to strip them of them femininity.
Our deepest fear is not that we are inadequate.
Our deepest fear is that we are powerful beyond measure.
It is our light, not our darkness that most frightens us.
Your playing small does not serve the world.
Aldo Alejandro Santiesteban III
There is nothing enlightened about shrinking
So that other people won't feel insecure around you.
We were all meant to shine, as children do.
It's not just in some of us; it's in everyone.
And as we let our own light shine,
We unconsciously give other people permission to do the same
As we are liberated from our own fear,
Our presence automatically liberates others.
Sincerely grateful
Aldo A Santiesteban III
Chronicles of the Warrior Princess (Update from 10/20)
So when we last left on with our heroine she was getting some much needed uninterrupted rest. She had walked around the cancer ward for the first time. And was looking like her visabuelo hanging out in the recliner with her hospital gown open exposing her belly lol. Is still surprising how quickly the days go by. Its hard to focus on anything besides Isabel naturally. But with the good days you just want to soak up each smile and twinkle in her eyes. Each little laugh or sly smile or her clever wit gets you true the troubling moments up ahead. You want to start researching all the medicines she will be taking, and bracing yourself for the side effects. But at the end of the day you can read up on it, and mentally prepare yourself for them but you just don't know. You dont know which ones she will get, how bad it will be, their is no way of knowing in advance. So you just have to be knowledgeable of what to expect and not get to wrapped up in what you find out. Long term vision is a must when dealing with something of this magnitude. But taking it day to day ensures your sanity. Anyways on to the updates..............
Friday: Of all the days this one being the 10th. I would say it was the most pleasurable, but anytime in here can't really be labeled that. You could say it was the ray of sunlight shining through the dark clouds. Isabel was able to stay off her IV during the days now. So it was alot easier for her to move around. Which she quickly took advantage of by lounging out in the recliner. A little later on in the day after lunch she headed over to the sofa by the window to take in the view from her room. She took a nice long relaxing nap. I came I would say around the middle, and excused myself to the parent lounge room you could call it. When Isabel woke up she was in a great mod. Maybe the small taste of freedom off the IV and not being hooked up to the other monitors lifted her spirits. She was her bubbly self, with a smile that lite up my heart. I asked if she wanted to go to the playroom instead of being in the room. She looked excited while nodding her head up and down, while putting on her slippers. We walked over to the playroom and she went straight to the dollhouse. Watching her play it was like being at home. She was making up a story and singing, its almost like she forgot where she was for that moment. One toy after the other briefly entertained her, but their was another exciting event to take place later. Earlier in the day the nurse had reminded Isa that today was dog day. They bring in specially trained dogs for the kids to pet while in here. Their was also talk of a dog that could ride a skateboard. Isa was a bit skeptical about the thought of that. She had a wait and see look on her face. We went back to the room to lay down for a nap before the dogs were to arrive. Some how we lost track of time, because as soon as we layed down I looked at the clock and realized the dogs were expected to be here in 20 mins. No more then 5 mins later the art therapist came in to have Isa paint some paper pumpkins. They gave her three to decorate with eyes and color on. Each one was given a distinctive look with a different nose and mouth. No sooner did she finish the pumpkins we got a knock on the door. Isa was excited that she was going to get to pet the dogs, but when in front of them she started acting shy. That was until she saw the little dog on the skate board. A little bit of a disclaimer although the dog was "on the skateboard" it wasn't doing it unassisted. They had a pole attached to it so they could maneuver it. Isabel didn't seem to mind, but alas my excitement was all but lost lol. Oh I forgot to mention earlier in the day before I came over after work, Isabel had a hearing test. Most of us when we think of a hearing test its a simple 5 min test. The one they gave Isabel was a bit more intense. First of all they attached who knows what to her ears and monitors on her head. She also had to be slightly sedated since the test took about 1 1/2 hours. At first our princess warrior put up a good fight to stay awake, but she eventually succumbed to the sedative and went to sleep. The rest of the day was more relaxing and nothing else too exciting.
Saturday: Another solid night of sleep. I think she was practicing her warrior fighting technique in her sleep cause she was moving her arms a bit as she dreamed lol. She was scheduled for her first Cat scan after having started her Chemo. This would go a long way to determining how effective the first cycle of chemo was. How much it would shrink the tumor. So their was a weird sense of excitement at the thought of finding out her tumor was now smaller. We had a sense that it had shrunken somewhat since her face was less droopy, and her smile was coming back. But the Cat scan almost didn't happen. For them to get an accurate picture they needed to her to stay still while she was in the Cat scan. The two previous ones that wasn't a problem, and she actually slept through them. But today not only did she have to drink the lemonade contrast. When she got downstairs to do the Cat scan, they needed to inject some contrast in her IV. This did not go over well with are Warrior Princess at all. She began to try and get up out of the bed they had her laying in. She started crying and getting really worked up. The technician said that if she didn't calm down we would have to wait till tomorrow and get sedated. I told them to give us a minute so I could calm her down. It took a minute or two but she finally calmed down enough to start the initial Cat Scan with just the liquid contrast. After that was done we had to wait on the doctor to come to give her the IV contrast. That was going to be a more daunting task trying to keep her calm after them injecting it into her IV, seeing as how them just touching her IV tube gets her worked up. The doctor came in and she already started getting worked up. They had a look on their face like they were ready to send her back upstairs. I looked at the doctor and asked her to give me a minute so we didn't have to wait till tomorrow. I told Isabel that I would be honest with her, so I proceeded to explain they needed to put something in the IV and that she had to stay still after. If she didn't stay still I told her we would have to do it again tomorrow and she would have to do it again and again till they got their picture they wanted. With a stiff upper lip our Warrior Princess put her game face on and told the doctor "Do It". Phew we got through another procedure. Afterwards we were able to relax and rest. She had her cousins come visit later that evening and she was in a good mood again. Day 12 had come to an end.
Sunday: Today began the second cycle of her Chemo treatment. This was going to be the more aggressive cocktail, since the first one cycle was three drugs, the second cycle was up'd to 5 drugs. Also on average the other ones were giving for about 1 hr on her IV. This round their was one that took 4 hours to administer. But the effects of the more aggressive treatment wouldn' be known until sometime next week. Most of the side effects take about a week to show. So as everything else its a wait and see approach. Luckily the day of she is still in great spirits. Isabel and I got to Tango (a cell phone Skype) while they were giving her the chemo in her IV. I made funny faces while Isa looked on and made some back at me. It made me feel better about not being able to be there to hold her hand. I was at the shop trying to make up some hours. I will say again that watching the Redskins lose doesn't have the same effect it did last year. Its a quick disappointment and instantly forgotten. Don't get me wrong it would have been great for a win, but I was in for a much more satisfying surprise later in the day. As I was in the midst of anger and disappointment with the Redskins letting another game get out of their grasp. I reached a phone call from Ivey, she had just talked to the oncologist at the hospital. They had looked over her Cat scan from Saturday, and their was a reduction in the tumor. I was ecstatic this was the news we had been anxiously waiting for. Not knowing how well the tumor would respond to the chemo was worrisome. But the news that it looked to be a 40% reduction was shocking to say the least. Being a typical Cuban I still had my reservation, until I could see the Cat Scan and with my "doctor" degree compare the new ct scan with the old one from last week. Although I know that the doctors wouldn't have told us that it was such a reduction with out being sure about it. So many questions popped into our heads. What did this mean? Where they expecting such a large reduction? Would the treatment plan change now? Did she still have to go through 6-8 months of chemo? Could they now be less aggressive? Was the first reduction the easiest, and the rest still be hard to shrink with chemo? But for the rest of the day a smirk was never too far from the surface. It was just the next line of good news that we have received since the first day the tumor was discovered. Tonight would be a good night, the mind would be at ease knowing that Isabel our Warrior Princess hasn't, won't and will never stop fighting.
So as we come up on two weeks in the hospital, the love, prayers, positive thoughts and support is as strong as ever. All the nurses love seeing Isabel smiling and coloring. Her room is one of the most decorated on the ward. The teddy bears are overflowing and the balloons are flowing in the air. As the saying goes "All is well that ends well", and we couldn't have asked for a better ending to the week. I will leave you with this...................
"Those who bring sunshine to the lives of others cannot keep it from themselves." - James M Barrie
Friday: Of all the days this one being the 10th. I would say it was the most pleasurable, but anytime in here can't really be labeled that. You could say it was the ray of sunlight shining through the dark clouds. Isabel was able to stay off her IV during the days now. So it was alot easier for her to move around. Which she quickly took advantage of by lounging out in the recliner. A little later on in the day after lunch she headed over to the sofa by the window to take in the view from her room. She took a nice long relaxing nap. I came I would say around the middle, and excused myself to the parent lounge room you could call it. When Isabel woke up she was in a great mod. Maybe the small taste of freedom off the IV and not being hooked up to the other monitors lifted her spirits. She was her bubbly self, with a smile that lite up my heart. I asked if she wanted to go to the playroom instead of being in the room. She looked excited while nodding her head up and down, while putting on her slippers. We walked over to the playroom and she went straight to the dollhouse. Watching her play it was like being at home. She was making up a story and singing, its almost like she forgot where she was for that moment. One toy after the other briefly entertained her, but their was another exciting event to take place later. Earlier in the day the nurse had reminded Isa that today was dog day. They bring in specially trained dogs for the kids to pet while in here. Their was also talk of a dog that could ride a skateboard. Isa was a bit skeptical about the thought of that. She had a wait and see look on her face. We went back to the room to lay down for a nap before the dogs were to arrive. Some how we lost track of time, because as soon as we layed down I looked at the clock and realized the dogs were expected to be here in 20 mins. No more then 5 mins later the art therapist came in to have Isa paint some paper pumpkins. They gave her three to decorate with eyes and color on. Each one was given a distinctive look with a different nose and mouth. No sooner did she finish the pumpkins we got a knock on the door. Isa was excited that she was going to get to pet the dogs, but when in front of them she started acting shy. That was until she saw the little dog on the skate board. A little bit of a disclaimer although the dog was "on the skateboard" it wasn't doing it unassisted. They had a pole attached to it so they could maneuver it. Isabel didn't seem to mind, but alas my excitement was all but lost lol. Oh I forgot to mention earlier in the day before I came over after work, Isabel had a hearing test. Most of us when we think of a hearing test its a simple 5 min test. The one they gave Isabel was a bit more intense. First of all they attached who knows what to her ears and monitors on her head. She also had to be slightly sedated since the test took about 1 1/2 hours. At first our princess warrior put up a good fight to stay awake, but she eventually succumbed to the sedative and went to sleep. The rest of the day was more relaxing and nothing else too exciting.
Saturday: Another solid night of sleep. I think she was practicing her warrior fighting technique in her sleep cause she was moving her arms a bit as she dreamed lol. She was scheduled for her first Cat scan after having started her Chemo. This would go a long way to determining how effective the first cycle of chemo was. How much it would shrink the tumor. So their was a weird sense of excitement at the thought of finding out her tumor was now smaller. We had a sense that it had shrunken somewhat since her face was less droopy, and her smile was coming back. But the Cat scan almost didn't happen. For them to get an accurate picture they needed to her to stay still while she was in the Cat scan. The two previous ones that wasn't a problem, and she actually slept through them. But today not only did she have to drink the lemonade contrast. When she got downstairs to do the Cat scan, they needed to inject some contrast in her IV. This did not go over well with are Warrior Princess at all. She began to try and get up out of the bed they had her laying in. She started crying and getting really worked up. The technician said that if she didn't calm down we would have to wait till tomorrow and get sedated. I told them to give us a minute so I could calm her down. It took a minute or two but she finally calmed down enough to start the initial Cat Scan with just the liquid contrast. After that was done we had to wait on the doctor to come to give her the IV contrast. That was going to be a more daunting task trying to keep her calm after them injecting it into her IV, seeing as how them just touching her IV tube gets her worked up. The doctor came in and she already started getting worked up. They had a look on their face like they were ready to send her back upstairs. I looked at the doctor and asked her to give me a minute so we didn't have to wait till tomorrow. I told Isabel that I would be honest with her, so I proceeded to explain they needed to put something in the IV and that she had to stay still after. If she didn't stay still I told her we would have to do it again tomorrow and she would have to do it again and again till they got their picture they wanted. With a stiff upper lip our Warrior Princess put her game face on and told the doctor "Do It". Phew we got through another procedure. Afterwards we were able to relax and rest. She had her cousins come visit later that evening and she was in a good mood again. Day 12 had come to an end.
Sunday: Today began the second cycle of her Chemo treatment. This was going to be the more aggressive cocktail, since the first one cycle was three drugs, the second cycle was up'd to 5 drugs. Also on average the other ones were giving for about 1 hr on her IV. This round their was one that took 4 hours to administer. But the effects of the more aggressive treatment wouldn' be known until sometime next week. Most of the side effects take about a week to show. So as everything else its a wait and see approach. Luckily the day of she is still in great spirits. Isabel and I got to Tango (a cell phone Skype) while they were giving her the chemo in her IV. I made funny faces while Isa looked on and made some back at me. It made me feel better about not being able to be there to hold her hand. I was at the shop trying to make up some hours. I will say again that watching the Redskins lose doesn't have the same effect it did last year. Its a quick disappointment and instantly forgotten. Don't get me wrong it would have been great for a win, but I was in for a much more satisfying surprise later in the day. As I was in the midst of anger and disappointment with the Redskins letting another game get out of their grasp. I reached a phone call from Ivey, she had just talked to the oncologist at the hospital. They had looked over her Cat scan from Saturday, and their was a reduction in the tumor. I was ecstatic this was the news we had been anxiously waiting for. Not knowing how well the tumor would respond to the chemo was worrisome. But the news that it looked to be a 40% reduction was shocking to say the least. Being a typical Cuban I still had my reservation, until I could see the Cat Scan and with my "doctor" degree compare the new ct scan with the old one from last week. Although I know that the doctors wouldn't have told us that it was such a reduction with out being sure about it. So many questions popped into our heads. What did this mean? Where they expecting such a large reduction? Would the treatment plan change now? Did she still have to go through 6-8 months of chemo? Could they now be less aggressive? Was the first reduction the easiest, and the rest still be hard to shrink with chemo? But for the rest of the day a smirk was never too far from the surface. It was just the next line of good news that we have received since the first day the tumor was discovered. Tonight would be a good night, the mind would be at ease knowing that Isabel our Warrior Princess hasn't, won't and will never stop fighting.
So as we come up on two weeks in the hospital, the love, prayers, positive thoughts and support is as strong as ever. All the nurses love seeing Isabel smiling and coloring. Her room is one of the most decorated on the ward. The teddy bears are overflowing and the balloons are flowing in the air. As the saying goes "All is well that ends well", and we couldn't have asked for a better ending to the week. I will leave you with this...................
"Those who bring sunshine to the lives of others cannot keep it from themselves." - James M Barrie
Chronicles of the Warrior Princess (Update from 10/17)
Sorry that it has been a few days since the last update. With going back to work and trying to get extra rest, its been hard to sit down at the computer and keep everybody updated. Hopefully on her FB page I can start doing small daily updates. I could go on for another two or three paragraphs about how Isabel's smile and laugh gives me hope for another day. I just sit and watch how she can still be the Isabel we all know and love. I keep reminding myself that even though the darkest days are in front of us. If this is the Isabel that we get back, it will be worth all the pain we have endure. Its unfortunate when she starts getting use to all the wires that are hooked up to her. Or how she knows which ones have to be unplugged for her to go to the bathroom. But I guess like anything else she adapts to her situation. She still doesn't care for the nurses too much, but she does have one or two she will actually acknowledge lol. So I'll keep the intro shorter this time and on to the updates..............................
Tuesday: You could label it D-Day. This was the day that we sat down with the oncologist to discuss the results of all the test and ct scans and pet scans. We would also discuss her treatment schedule. And be able to answer any questions we have. It was a heart wrenching day. I mean you know what it is but you just want to get on to what the treatment will be like. We had a general idea but this would actually be in black and white. As per usual in our time here Ivey had called me to let me know that instead of the 3:30 appt we had for this day, if I came earlier she would have time. So with that I left work as soon as I hung up the phone. Why wait for another 3 1/2 hours (btw it was noon lol) when the answer was a car drive away. But instead of being able to sit down with the doctor right away. We ended up having to wait for 1 1/2 to have are meet. One thing that did change about the diagnosis is that instead of it being the very rare Burkitt's lymphoma, it was actually Diffused Large B Cell. Which was a more common type of lymphoma. I know what when I first started this updates I joked about she might as well have a rare lymphoma. But honestly it was a bit relieving that it was one that was more common. This meant that they had seen it more and treated it successfully more times. It was also confirmed that she did have cancerous cells in her spinal fluid. Which I kinda concluded seeing as how she had already had two lumbar injections of a chemo cocktail. This is also when we found out instead of the too good to be true discharge of this weekend. She was actually looking at a more realistic discharge of Octorber 29th. That took us back for a min cause we realized it would be another almost two weeks before are Warrior Princess could return to her castle. We sat and discussed and asked questions for a good 45 mins. We got alot of good question from the doctors lol. We discussed the different drugs she would be getting, when she was getting them, and what side effects we could expect. The one that we knew but still found it hard to stomach was the hair loss. As anybody that has been around Isabel knows she loves her long curly hair. Also anybody that knew her when she was a baby knows it took her a good 3 1/2 years for it to be so long. I remember for the longest time when she was younger, she would get mistaken for a boy. Never mind the fact that she had all pink on, and two earrings lol. Maybe its cause she looked so much like Papi. I had had the thought when this was first going on that with chemo most likely comes hair loss. So I thought a fun way around that was to buy her disney princess wigs. Although the idea sounds like it would be fun. The actually reality of having to explain to her why her beautiful hair had to fall out was one i still am trying to grasp. You go from glossing over heavy topics like this when your kids are young. To having to be faced with breaking bad news after bad news. I guess this will prepare us for when she is a teenager, and ask some tough questions. At this point I'd rather talk about boys then telling my daughter she has cancer and will loss all her hair. But right now I'm thinking about a Rapunzel (Tangled) angle. Something along the lines of just cause she had her long beautiful hair cut off, she didn't loss her special power. She just had to look deeper inside to find it. But we will be talking to the nurses and specialist here to see what advice they have. So basically her treatment schedule looks like this 2 weeks home 3 to 5 days in the hospital. So with that we begin the journey that only positive energy, inner strength and love can guide us.
Wednesday: Isabel had a wonderful night of sleep. Barely waking up when they took blood at 4 am. For the life of me I don't understand why they have to do it in the middle of the night. But I guess nothing at the hospital is suppose to make sense. Like why parents can't get discounts at the cafeteria. Isabel woke up refreshed and happy as usual. Today would be her third lumbar injection of chemo. Which meant her going down to the OR again and her not being able to eat till after her prodecure. As the day progressed she become a bit more cranky. But who could blame her she was hungry and I had told her we had to go downstairs again. Last time we went down on Monday I had to carry her since she was a bit nervous. This time I found a better way to distract her. We switched her to the gurney but I got her comfy with her blanket and took the portable dvd player. Its surprising what a little Sponge Bob will do to calm her down lol. When we got there she said "Papi I've been here before, I want to go back upstairs" lol. She started to get tense and complained she was hungry. I asked her what she wanted when she woke up from the doctors checking her out. After a little thought she told me she want: sphaghetti, chocolate milk, green jello, banana & fruit loops with a smile. I tol d her I would text Mami her order and have it ready when she went back upstairs. That seemed to keep her content for the mean time. Sadly I couldn't stay until she woke up I actually had to go to work. Ivey told me that after the procedure this time she had to lay down there for two hours. Needless to say she was starving when she got upstairs. And proceeded to dine on her requested menu. Not too much else excitement for the day. Until I got a call at work from Ivey saying they had to take Isa to get a chest x-ray because she wasn't taking deep breaths. Also her oxygen levels had been lower then they would have liked. Something was mentioned that if it didn't get better it could be a punctured lung. Luckily that wasn't the case and she just needed a treatment from a neublizer. But there was a moment like not something else don't make their be complications now. On a positive note they did give her bubbles so that it could help with her breathing. Guess it was a fun way to trick the kids to blowing a bit deeper. So with bubbles in the room so ended another day of battle with our little warrior princess.
n
Thursday: Of all the days this week I would say this was the most relaxing for Isabel. There was no procedures scheduled minimal interruptions by the nurses. Isabel had the best sleep of the week. She didn't even budge when they took blood at night and she slept in till 9. She was able to wake up and eat her breakfast. And got to spend the day with her Mami. She even managed to not ignore her nurse for once and actually spoke with her lol. She got a nice long nap in and had her lunch. Nothing too exciting just a day of rest for are Warrior Princess. We did do one thing today that was a first since are stay at the hospital. Me and Isabel went for a stroll around the cancer ward. She had mostly been staying in bed and sometimes we would get her to sit in her chair. But the doctor had mentioned that she needed to start walking around. So with that Papi and Isa went for a little tour around the place. The first go around she was a bit more hesitant, but the second time around she seemed to get more comfortable. And when I asked her if we could do this again tomorrow she smiled and nodded her head. We set her up in the reclining chair in the room and she proceeded to relax there. It was nice to not have her just in the bed. As I look around her room I see a wall full of pictures of family and a ton of supportive cards. I know that this is the beginning and the end will be just as sweet.
Tuesday: You could label it D-Day. This was the day that we sat down with the oncologist to discuss the results of all the test and ct scans and pet scans. We would also discuss her treatment schedule. And be able to answer any questions we have. It was a heart wrenching day. I mean you know what it is but you just want to get on to what the treatment will be like. We had a general idea but this would actually be in black and white. As per usual in our time here Ivey had called me to let me know that instead of the 3:30 appt we had for this day, if I came earlier she would have time. So with that I left work as soon as I hung up the phone. Why wait for another 3 1/2 hours (btw it was noon lol) when the answer was a car drive away. But instead of being able to sit down with the doctor right away. We ended up having to wait for 1 1/2 to have are meet. One thing that did change about the diagnosis is that instead of it being the very rare Burkitt's lymphoma, it was actually Diffused Large B Cell. Which was a more common type of lymphoma. I know what when I first started this updates I joked about she might as well have a rare lymphoma. But honestly it was a bit relieving that it was one that was more common. This meant that they had seen it more and treated it successfully more times. It was also confirmed that she did have cancerous cells in her spinal fluid. Which I kinda concluded seeing as how she had already had two lumbar injections of a chemo cocktail. This is also when we found out instead of the too good to be true discharge of this weekend. She was actually looking at a more realistic discharge of Octorber 29th. That took us back for a min cause we realized it would be another almost two weeks before are Warrior Princess could return to her castle. We sat and discussed and asked questions for a good 45 mins. We got alot of good question from the doctors lol. We discussed the different drugs she would be getting, when she was getting them, and what side effects we could expect. The one that we knew but still found it hard to stomach was the hair loss. As anybody that has been around Isabel knows she loves her long curly hair. Also anybody that knew her when she was a baby knows it took her a good 3 1/2 years for it to be so long. I remember for the longest time when she was younger, she would get mistaken for a boy. Never mind the fact that she had all pink on, and two earrings lol. Maybe its cause she looked so much like Papi. I had had the thought when this was first going on that with chemo most likely comes hair loss. So I thought a fun way around that was to buy her disney princess wigs. Although the idea sounds like it would be fun. The actually reality of having to explain to her why her beautiful hair had to fall out was one i still am trying to grasp. You go from glossing over heavy topics like this when your kids are young. To having to be faced with breaking bad news after bad news. I guess this will prepare us for when she is a teenager, and ask some tough questions. At this point I'd rather talk about boys then telling my daughter she has cancer and will loss all her hair. But right now I'm thinking about a Rapunzel (Tangled) angle. Something along the lines of just cause she had her long beautiful hair cut off, she didn't loss her special power. She just had to look deeper inside to find it. But we will be talking to the nurses and specialist here to see what advice they have. So basically her treatment schedule looks like this 2 weeks home 3 to 5 days in the hospital. So with that we begin the journey that only positive energy, inner strength and love can guide us.
Wednesday: Isabel had a wonderful night of sleep. Barely waking up when they took blood at 4 am. For the life of me I don't understand why they have to do it in the middle of the night. But I guess nothing at the hospital is suppose to make sense. Like why parents can't get discounts at the cafeteria. Isabel woke up refreshed and happy as usual. Today would be her third lumbar injection of chemo. Which meant her going down to the OR again and her not being able to eat till after her prodecure. As the day progressed she become a bit more cranky. But who could blame her she was hungry and I had told her we had to go downstairs again. Last time we went down on Monday I had to carry her since she was a bit nervous. This time I found a better way to distract her. We switched her to the gurney but I got her comfy with her blanket and took the portable dvd player. Its surprising what a little Sponge Bob will do to calm her down lol. When we got there she said "Papi I've been here before, I want to go back upstairs" lol. She started to get tense and complained she was hungry. I asked her what she wanted when she woke up from the doctors checking her out. After a little thought she told me she want: sphaghetti, chocolate milk, green jello, banana & fruit loops with a smile. I tol d her I would text Mami her order and have it ready when she went back upstairs. That seemed to keep her content for the mean time. Sadly I couldn't stay until she woke up I actually had to go to work. Ivey told me that after the procedure this time she had to lay down there for two hours. Needless to say she was starving when she got upstairs. And proceeded to dine on her requested menu. Not too much else excitement for the day. Until I got a call at work from Ivey saying they had to take Isa to get a chest x-ray because she wasn't taking deep breaths. Also her oxygen levels had been lower then they would have liked. Something was mentioned that if it didn't get better it could be a punctured lung. Luckily that wasn't the case and she just needed a treatment from a neublizer. But there was a moment like not something else don't make their be complications now. On a positive note they did give her bubbles so that it could help with her breathing. Guess it was a fun way to trick the kids to blowing a bit deeper. So with bubbles in the room so ended another day of battle with our little warrior princess.
n
Thursday: Of all the days this week I would say this was the most relaxing for Isabel. There was no procedures scheduled minimal interruptions by the nurses. Isabel had the best sleep of the week. She didn't even budge when they took blood at night and she slept in till 9. She was able to wake up and eat her breakfast. And got to spend the day with her Mami. She even managed to not ignore her nurse for once and actually spoke with her lol. She got a nice long nap in and had her lunch. Nothing too exciting just a day of rest for are Warrior Princess. We did do one thing today that was a first since are stay at the hospital. Me and Isabel went for a stroll around the cancer ward. She had mostly been staying in bed and sometimes we would get her to sit in her chair. But the doctor had mentioned that she needed to start walking around. So with that Papi and Isa went for a little tour around the place. The first go around she was a bit more hesitant, but the second time around she seemed to get more comfortable. And when I asked her if we could do this again tomorrow she smiled and nodded her head. We set her up in the reclining chair in the room and she proceeded to relax there. It was nice to not have her just in the bed. As I look around her room I see a wall full of pictures of family and a ton of supportive cards. I know that this is the beginning and the end will be just as sweet.
Chronicles of the Warrior Princess: And so it continues (Update from 10/16)
Greetings and salutations,
So when we last left off are "Warrior Princess" was handling all of the procedures, the poking and prodding about as well as one could hope. Well nothing has changed in that respect she is still standing and still ending her days with a smile. Everyday I marvel at how she can keep her spirits so high. It really makes you pause and think about the times a small cold or setback, could have made me think about complaining. This whole experience has really shown what strength really is about. Its not how much you try to show, its in how much you can transfer to other people. So Isabel is the strongest person that I believe I will ever meet. Its amazing as a parent to stand in awe of your child who is only 4 1/2 year old. I feel like once she overcomes this cancer, she will have surpassed my greatest accomplishment. I guess in the end that's all any parent ever really wants. For the next generation to take it to the next level. I hope that I get to tell the story of Isabel the Warrior Princess over and over again. If Xena could become a cult legend, our Isa should be one of inspirational proportions. I understand now why she loves Tinkerbell so much they have much in common. They have wings like angels and can spread their "dust" of love to all who will accept it. Her smile brightens up the day of nurses, surgeons, doctors & visitors. So three more days in and the outlook is as sunny as the weather outside. Who coincidentally once she was officially diagnosed and a preliminary treatment plan was formed. I guess even mother nature wanted to borrow some of her sunshine. So on to the daily updates as best as I can remember.
Sunday: Day Two of her "rebirth". We woke up in the ICU in great spirits. Having had Isabel really start to smile the previous day, we were hopeful to be moved up to the Cancer Ward. But like any goal worth fighting for, we had to go through some pain to get there. Although the nurses and doctors were coming less frequently to check her vitals and perform the same neurological test. We had something a lot worse in store for are Warrior Princess. The dreaded band-aid removal. The previous day she had an EKG to check her heart after her three prong surgical day. So we had a total of 12 strips still left from Saturday. Those had to come off for her to move upstairs. Add to that the larger square bandage on her neck from her biopsy from Thursday(I believe). And finally her catheter needed to come out so they could see if she could use the bathroom on her own. All of these things were painful in their own right separately. But add them all together and you had a nice jumbo pot full of pain. Considering a simple Dora band aid would stay on a week after her boo boo, so as not to have to pull it off lol. So Ivey decided it would be best for Papi to be the bad guy lol. As she went to the family waiting room to collect herself and eat her lunch. Isabel, Papi & the Nurse were left to test her pain tolerance. First was the catheter which I forgot to mention also had some tape attached to her leg that had to be removed first. Our warrior princess let out a mild angry warning. "I don't like her Papi she started out saying. Having seen her already mad, I proceeded to just go all in and remove the 12 EKG strips. Each one added to her discomfort and warrior-like scream. If the nurse had any doubt that Isabel was a fighter her bucking like a Spanish bull who just saw red. I tried all I could to calm her down.
"Isabel what's your last name" I asked her.
Isabel "NO I DON'T WANT TO SAY THAT". "
"Isabel who is my hero?"
Isabel "Papi tell her to leave" with a look in her eyes like she meant busines
"Isa please stay still, nobody wants this to happen to you, its ok to be angry"
Isabel as if she needed my permission let out a nice loud fair warning "Papi I don't like her, tell her to leave, she's hurting me"
"Is Is were almost done and then she will leave and nobody will bother you and let you rest"
Just more grunting and a look that I would never hope was directed at me
Finally we had taken them off and I was trying to soothe her and calm her down.
With her heart still racing she looked over at the nurse who was cleaning up "Papi she's still in here" lol
I told her I'm sorry Papi had to do that but we couldn't go upstairs to the nice room with all those stickers on her. She asked that I go get Mami and I obliged. The hard part of the day was complete..............or so I thought. With Isabel back to being her playful happy self, I felt comfortable leaving the hospital for a breather to watch the Skins game. The oncologist came by before I left and said that with everything coming back positive that she would be moving upstairs later in the day. So with that great news I left to watch the Redskins take on the hated Eagles. Well I guess not everything came up roses this weekend. As I unfortunately expected the Redskins lost the game, and gave life to a 1-5 team. Being upset about something so trivial felt unimportant after-wards. But I allowed myself a moment of fandom
To sum up the day I received a great relief after having to put her through pain. By her being moved up to a nicer less invasive and bigger room. But Isabel got the gift she had been waiting for. To see her two cousins Jeilyn and Jessica aka her sisters from another mother. For them to be able to come into the room and spend time with her had her giddy as I have seen her since her the beginning of all this. So with that another wonderful day ended with a smile on her face.
Monday: After sleeping at the house for a good 6 hours, I woke up feeling refreshed. But with Isabel and her upcoming day on my mind. I knew that today would be her second treatment of Chemo in her spinal fluid. As I headed to the hospital I tried to prepare myself for the day ahead. They say that music can be therapeutic, I think it can also be a great escape. Sometimes being in your head as they call it can mentally drain you. For me music allows me small escapes into just being in the music. Before I know it I was pulling up to a familiar sight. A nice colorful sign "Children's Hospital". As I headed upstairs I was hoping that this ride of good news and pleasant surprises would continue. Again Isabel didn't disappoint. I entered the room with her smiling and watching her now allowed around Papi "Sponge Bob Square Pants". Compared to all the previous days. This one started out the most relaxing. She had slept through the night. Even barely opening her eyes when they drew blood at 4 am the previous night. There wasn't much to do but wait for her spinal Chemo infusion later on in the day. Which we were told would be around 1. As I now learned when being in the hospital for this length of time. If they tell you it will be in an hour it will take 3. If they tell you 3 hours it will probably be in 1. They say patience is a virtue. As a mantra I often say, I find it hard to appreciate patience when being told when her scheduled procedure would take place. So later in the day around 3pm they were ready to take her to the OR. Isabel tired of being poked and produced was very hesitant to being asked to switch to a gurney to be taken down to the OR. We finally got her to agree to go down if Papi would carry her down. Nothing gave me greater pleasure then having her wrapped in my arms, feeling like a firefighter carrying his victim to safety. That's how I have to look at each and every procedure, treatment, test & medicine. Like each one brings her closer to being healed. The surgery went off without a hitch, and seemed to be over before it started. Before you know it Ivey and I were in the recovery room with her watching ICARLY. Waiting to get the ok to head back to her room. By 4:30 I believe Isabel was in her bed smiling again and ready to take a nap. I know that children her age take naps everyday. But through all this never has sleep been as rewarding then going through something of this scope. I know now that when I was growing up I've had my parents stalk me in my sleep. Nothing is as peaceful as watching your child sleep peaceful without a care in the world. If you really stare long enough you might see their REM sleep, and wonder what they are dreaming about. When she woke up she got to see her cousin Ty Ty who was so excited to finally see his Isabel. She got to eat chicken nuggets and french fries. She later capped the night off by having a bowl and a half of fruit loops with a side of chocolate milk, and a cupcake to top it all off (baked by her Tia Raquel of course).
With that ends day 3 of her rebirth, with everything going as well as could be expected. So as I send this out during the start of her 4th day. I leave you with this...........
"Adversity is like a strong wind. It tears away from us all but the things that cannot be torn, so that we see ourselves as we really are." -Arthur Golden
So thank you for your continued support, prayers & positive energy sent our way
Aldo A Santiesteban (father of the Princess Warrior)
So when we last left off are "Warrior Princess" was handling all of the procedures, the poking and prodding about as well as one could hope. Well nothing has changed in that respect she is still standing and still ending her days with a smile. Everyday I marvel at how she can keep her spirits so high. It really makes you pause and think about the times a small cold or setback, could have made me think about complaining. This whole experience has really shown what strength really is about. Its not how much you try to show, its in how much you can transfer to other people. So Isabel is the strongest person that I believe I will ever meet. Its amazing as a parent to stand in awe of your child who is only 4 1/2 year old. I feel like once she overcomes this cancer, she will have surpassed my greatest accomplishment. I guess in the end that's all any parent ever really wants. For the next generation to take it to the next level. I hope that I get to tell the story of Isabel the Warrior Princess over and over again. If Xena could become a cult legend, our Isa should be one of inspirational proportions. I understand now why she loves Tinkerbell so much they have much in common. They have wings like angels and can spread their "dust" of love to all who will accept it. Her smile brightens up the day of nurses, surgeons, doctors & visitors. So three more days in and the outlook is as sunny as the weather outside. Who coincidentally once she was officially diagnosed and a preliminary treatment plan was formed. I guess even mother nature wanted to borrow some of her sunshine. So on to the daily updates as best as I can remember.
Sunday: Day Two of her "rebirth". We woke up in the ICU in great spirits. Having had Isabel really start to smile the previous day, we were hopeful to be moved up to the Cancer Ward. But like any goal worth fighting for, we had to go through some pain to get there. Although the nurses and doctors were coming less frequently to check her vitals and perform the same neurological test. We had something a lot worse in store for are Warrior Princess. The dreaded band-aid removal. The previous day she had an EKG to check her heart after her three prong surgical day. So we had a total of 12 strips still left from Saturday. Those had to come off for her to move upstairs. Add to that the larger square bandage on her neck from her biopsy from Thursday(I believe). And finally her catheter needed to come out so they could see if she could use the bathroom on her own. All of these things were painful in their own right separately. But add them all together and you had a nice jumbo pot full of pain. Considering a simple Dora band aid would stay on a week after her boo boo, so as not to have to pull it off lol. So Ivey decided it would be best for Papi to be the bad guy lol. As she went to the family waiting room to collect herself and eat her lunch. Isabel, Papi & the Nurse were left to test her pain tolerance. First was the catheter which I forgot to mention also had some tape attached to her leg that had to be removed first. Our warrior princess let out a mild angry warning. "I don't like her Papi she started out saying. Having seen her already mad, I proceeded to just go all in and remove the 12 EKG strips. Each one added to her discomfort and warrior-like scream. If the nurse had any doubt that Isabel was a fighter her bucking like a Spanish bull who just saw red. I tried all I could to calm her down.
"Isabel what's your last name" I asked her.
Isabel "NO I DON'T WANT TO SAY THAT". "
"Isabel who is my hero?"
Isabel "Papi tell her to leave" with a look in her eyes like she meant busines
"Isa please stay still, nobody wants this to happen to you, its ok to be angry"
Isabel as if she needed my permission let out a nice loud fair warning "Papi I don't like her, tell her to leave, she's hurting me"
"Is Is were almost done and then she will leave and nobody will bother you and let you rest"
Just more grunting and a look that I would never hope was directed at me
Finally we had taken them off and I was trying to soothe her and calm her down.
With her heart still racing she looked over at the nurse who was cleaning up "Papi she's still in here" lol
I told her I'm sorry Papi had to do that but we couldn't go upstairs to the nice room with all those stickers on her. She asked that I go get Mami and I obliged. The hard part of the day was complete..............or so I thought. With Isabel back to being her playful happy self, I felt comfortable leaving the hospital for a breather to watch the Skins game. The oncologist came by before I left and said that with everything coming back positive that she would be moving upstairs later in the day. So with that great news I left to watch the Redskins take on the hated Eagles. Well I guess not everything came up roses this weekend. As I unfortunately expected the Redskins lost the game, and gave life to a 1-5 team. Being upset about something so trivial felt unimportant after-wards. But I allowed myself a moment of fandom
To sum up the day I received a great relief after having to put her through pain. By her being moved up to a nicer less invasive and bigger room. But Isabel got the gift she had been waiting for. To see her two cousins Jeilyn and Jessica aka her sisters from another mother. For them to be able to come into the room and spend time with her had her giddy as I have seen her since her the beginning of all this. So with that another wonderful day ended with a smile on her face.
Monday: After sleeping at the house for a good 6 hours, I woke up feeling refreshed. But with Isabel and her upcoming day on my mind. I knew that today would be her second treatment of Chemo in her spinal fluid. As I headed to the hospital I tried to prepare myself for the day ahead. They say that music can be therapeutic, I think it can also be a great escape. Sometimes being in your head as they call it can mentally drain you. For me music allows me small escapes into just being in the music. Before I know it I was pulling up to a familiar sight. A nice colorful sign "Children's Hospital". As I headed upstairs I was hoping that this ride of good news and pleasant surprises would continue. Again Isabel didn't disappoint. I entered the room with her smiling and watching her now allowed around Papi "Sponge Bob Square Pants". Compared to all the previous days. This one started out the most relaxing. She had slept through the night. Even barely opening her eyes when they drew blood at 4 am the previous night. There wasn't much to do but wait for her spinal Chemo infusion later on in the day. Which we were told would be around 1. As I now learned when being in the hospital for this length of time. If they tell you it will be in an hour it will take 3. If they tell you 3 hours it will probably be in 1. They say patience is a virtue. As a mantra I often say, I find it hard to appreciate patience when being told when her scheduled procedure would take place. So later in the day around 3pm they were ready to take her to the OR. Isabel tired of being poked and produced was very hesitant to being asked to switch to a gurney to be taken down to the OR. We finally got her to agree to go down if Papi would carry her down. Nothing gave me greater pleasure then having her wrapped in my arms, feeling like a firefighter carrying his victim to safety. That's how I have to look at each and every procedure, treatment, test & medicine. Like each one brings her closer to being healed. The surgery went off without a hitch, and seemed to be over before it started. Before you know it Ivey and I were in the recovery room with her watching ICARLY. Waiting to get the ok to head back to her room. By 4:30 I believe Isabel was in her bed smiling again and ready to take a nap. I know that children her age take naps everyday. But through all this never has sleep been as rewarding then going through something of this scope. I know now that when I was growing up I've had my parents stalk me in my sleep. Nothing is as peaceful as watching your child sleep peaceful without a care in the world. If you really stare long enough you might see their REM sleep, and wonder what they are dreaming about. When she woke up she got to see her cousin Ty Ty who was so excited to finally see his Isabel. She got to eat chicken nuggets and french fries. She later capped the night off by having a bowl and a half of fruit loops with a side of chocolate milk, and a cupcake to top it all off (baked by her Tia Raquel of course).
With that ends day 3 of her rebirth, with everything going as well as could be expected. So as I send this out during the start of her 4th day. I leave you with this...........
"Adversity is like a strong wind. It tears away from us all but the things that cannot be torn, so that we see ourselves as we really are." -Arthur Golden
So thank you for your continued support, prayers & positive energy sent our way
Aldo A Santiesteban (father of the Princess Warrior)
Chronicles of the Warrior Princess: The Genesis (Update from 10/15)
Good morning everybody,
I have to say its amazing how much of a warrior our Isabel has been throughout this whole process. Although Saturday she had the most amount of surgical procedures and officially started her Chemo recovery plan. She was in her best mood since she came to Children's Tuesday night. Its almost as if she have no doubt, and complete faith that this medicine will finally allow her to be the Isa we all fell in love with. Yesterday she got to visit with all her abuelos and a handful of her tias. She has been joking, smiling, singing, playing in bed, and playing with her IPAD. I couldn't have asked for her to be in better spirits then she is now. Its almost as if I can't even be sad because how well she's taken it.
Now I'm not naive enough to know that its still not a long road back to her Cancer being in remission. But if the last two days are any indications of how she will be when she beats this Cancer. It will give me the strength to be able to endure her hardest days. Although I never wavered in my belief that she would beat this even on Tuesday & Wednesday when they weren't sure what exactly this was. But the fact that their has been so much prayer & positive energy I know has given me the extra strength I need to fully support Isabel. So keep sending prayers, keep sending us positive energy. It is such a powerful thing that I know deep down Isabel feeds off it as well. I truly believe that Isabel just is able to bring a smile to anybody she encounters. What a wonderful thing to see nurses & doctors leave her room with a smile or happiness, because this little girl can still smile thru all of this. They say what a difference a day makes but who knew it could have turned around 180 degrees.
Tuesday: Not knowing what was making her right side droop and visually look like a mild stroke
Wednesday: Knowing that she had some kind of mass in her brain, not knowing if it was just infectious growth, a tumor, a cancerous tumor, or something that
could only be operated but not completely removed. When the chief of neurology tells you that in all his years he never had seen a tumor of this complexity it makes you have to think the worst even if only for a second. But like I told Ivey the day the doctor showed us the MRI and the size, scope, and the complexity that this tumor had pushed against her brain stem, top of spinal cord, slightly around her cerebellum cortex, come around the side of her neck, and finally go to the back of her throat it could have been so much worse. I have to be completely honest although a lot of people say that they always believed, I truly never for one second thought she couldn't beat this "Cancerous Tumor" that was trying to test the very essence of Isabel's angelic like spirit. I had told Ivey that when she was younger they only gave her a 5% chance of her carrying a baby full term. Fast forward to her being pregnant with Isabel and she didn't have any complications being able to deliver a beautiful baby girl. So when this happened I had said to Ivey that she had a higher percentage of surviving this tumor then she did actually being born. I will take those odds I had said.
Thursday: After the CT Scans, various blood work, MRI, different neurological test it was concluded that she did in fact have Lymphoma. On the surface that could have been devastating news. But the fact that out of the four options they had given us this was the 2nd best one we could have hoped for. A Cancerous Tumor that has and could be shrunken and dissolved by going thru Chemo. The fact that she would probably not have to have brain surgery to take some out was a relief. That's not to say that anything could be 100% certainty as far as needing surgery. Because we knew what it was and that in the past Lymphoma was able to be treated mostly with Chemo was a sigh of relief.
Friday: The day the Oncologist was ready to tell us exactly and in more detail which kind of Lymphoma she had. Although all Lymphoma's have the basic Chemo treatment, the different kind would give more insight to the schedule of recovery. So it was concluded that it was Lymphoma - Non Hod skins - Burkitt's - Sporadic. This is a very rare form of Lymphoma and is found in less than 1% of all Lymphomas diagnosed in the United States. After hearing this I told Ivey well..............we knew Isabel was special this just confirmed it lol. We have been saying different positive mantra's to her through out this whole process. I would ask Isabel "What's your last name............Santiesteban............and what are we............Isabel "strong and awesome". Now we can add 1 in a million.
Saturday: The beginning of her recovery process. Around 10 am she was taken to the OR to have three procedures done. The taking of Bone Marrow for testing, a Spinal Tap with an injection of Chemo in her spinal fluid, and finally a placement of a central line simply referred by the doctors and nurses as a Port. Guess we should now call Isabel Neomins she was cranky. I thought it was reasonable to assume this would be how it was. But within half an hour she was back to her happy self. Even her eyes looked as if they were happy and knew this was a means to an end. Nurses and doctors have been so pleased and encouraged at how this little girl remains in good spirits.
So this is where we stand today. As with the day she was born she is still the same Isabel as she has always been. Except going through all this will only make her the best Isabel Marie Santiesteban she has ever been. I wanted to just try and update as vividly as I could remember at this point. But also I want to keep somewhat of an online journal to her journey. Because I know its one that will want and need to be told. So when I send out updates of this kind, feel free to forward this to as many people as you want. Her name will be known simply because she is loved so much.
JP.S. - I take no responsibility for any grammatical errors lol
Thank you again for all your prayers, positive energy & support.
Aldo Alejandro Santiesteban III
I have to say its amazing how much of a warrior our Isabel has been throughout this whole process. Although Saturday she had the most amount of surgical procedures and officially started her Chemo recovery plan. She was in her best mood since she came to Children's Tuesday night. Its almost as if she have no doubt, and complete faith that this medicine will finally allow her to be the Isa we all fell in love with. Yesterday she got to visit with all her abuelos and a handful of her tias. She has been joking, smiling, singing, playing in bed, and playing with her IPAD. I couldn't have asked for her to be in better spirits then she is now. Its almost as if I can't even be sad because how well she's taken it.
Now I'm not naive enough to know that its still not a long road back to her Cancer being in remission. But if the last two days are any indications of how she will be when she beats this Cancer. It will give me the strength to be able to endure her hardest days. Although I never wavered in my belief that she would beat this even on Tuesday & Wednesday when they weren't sure what exactly this was. But the fact that their has been so much prayer & positive energy I know has given me the extra strength I need to fully support Isabel. So keep sending prayers, keep sending us positive energy. It is such a powerful thing that I know deep down Isabel feeds off it as well. I truly believe that Isabel just is able to bring a smile to anybody she encounters. What a wonderful thing to see nurses & doctors leave her room with a smile or happiness, because this little girl can still smile thru all of this. They say what a difference a day makes but who knew it could have turned around 180 degrees.
Tuesday: Not knowing what was making her right side droop and visually look like a mild stroke
Wednesday: Knowing that she had some kind of mass in her brain, not knowing if it was just infectious growth, a tumor, a cancerous tumor, or something that
could only be operated but not completely removed. When the chief of neurology tells you that in all his years he never had seen a tumor of this complexity it makes you have to think the worst even if only for a second. But like I told Ivey the day the doctor showed us the MRI and the size, scope, and the complexity that this tumor had pushed against her brain stem, top of spinal cord, slightly around her cerebellum cortex, come around the side of her neck, and finally go to the back of her throat it could have been so much worse. I have to be completely honest although a lot of people say that they always believed, I truly never for one second thought she couldn't beat this "Cancerous Tumor" that was trying to test the very essence of Isabel's angelic like spirit. I had told Ivey that when she was younger they only gave her a 5% chance of her carrying a baby full term. Fast forward to her being pregnant with Isabel and she didn't have any complications being able to deliver a beautiful baby girl. So when this happened I had said to Ivey that she had a higher percentage of surviving this tumor then she did actually being born. I will take those odds I had said.
Thursday: After the CT Scans, various blood work, MRI, different neurological test it was concluded that she did in fact have Lymphoma. On the surface that could have been devastating news. But the fact that out of the four options they had given us this was the 2nd best one we could have hoped for. A Cancerous Tumor that has and could be shrunken and dissolved by going thru Chemo. The fact that she would probably not have to have brain surgery to take some out was a relief. That's not to say that anything could be 100% certainty as far as needing surgery. Because we knew what it was and that in the past Lymphoma was able to be treated mostly with Chemo was a sigh of relief.
Friday: The day the Oncologist was ready to tell us exactly and in more detail which kind of Lymphoma she had. Although all Lymphoma's have the basic Chemo treatment, the different kind would give more insight to the schedule of recovery. So it was concluded that it was Lymphoma - Non Hod skins - Burkitt's - Sporadic. This is a very rare form of Lymphoma and is found in less than 1% of all Lymphomas diagnosed in the United States. After hearing this I told Ivey well..............we knew Isabel was special this just confirmed it lol. We have been saying different positive mantra's to her through out this whole process. I would ask Isabel "What's your last name............Santiesteban............and what are we............Isabel "strong and awesome". Now we can add 1 in a million.
Saturday: The beginning of her recovery process. Around 10 am she was taken to the OR to have three procedures done. The taking of Bone Marrow for testing, a Spinal Tap with an injection of Chemo in her spinal fluid, and finally a placement of a central line simply referred by the doctors and nurses as a Port. Guess we should now call Isabel Neomins she was cranky. I thought it was reasonable to assume this would be how it was. But within half an hour she was back to her happy self. Even her eyes looked as if they were happy and knew this was a means to an end. Nurses and doctors have been so pleased and encouraged at how this little girl remains in good spirits.
So this is where we stand today. As with the day she was born she is still the same Isabel as she has always been. Except going through all this will only make her the best Isabel Marie Santiesteban she has ever been. I wanted to just try and update as vividly as I could remember at this point. But also I want to keep somewhat of an online journal to her journey. Because I know its one that will want and need to be told. So when I send out updates of this kind, feel free to forward this to as many people as you want. Her name will be known simply because she is loved so much.
JP.S. - I take no responsibility for any grammatical errors lol
Thank you again for all your prayers, positive energy & support.
Aldo Alejandro Santiesteban III
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