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
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