There’s more but the library’s closing…I’ll write again tomorrow…

You’ve probably noticed that it’s been a while since I had the time to get over here to blog.  And unfortunately, there’s a really good reason for it. 

Well, good might not be the most appropriate of words.

The fact of the matter is that Kajsa is a very strong girl with an equally tenacious immune system.  And although this sounds fantastic, it is, in fact, a very bad thing for a transplanted organ.  So the chickadee is going through what is called an acute allograft rejection.  And yes, it sounds almost as frightening as it is.

Basically, Kajsa’s body has (despite strong immunosuppressants) detected the foreigner and is attacking the daylights out of it.  Which makes me say crap…a lot. 

Yesterday involved a lot of crying on my part.  No, I’m sorry.  That was the day before.  It really does run together.  I realized this morning that it’s been 2 weeks since we came to the hospital.  Unbelievable. 

Well, anyway, we were finally able to get Kajsa’s BP under control just to have her start spiking these outrageous fevers.  Then her belly got huge.  Huge as in carying quadruplets proportions.  It frightened me.  It frightened her nurse.  And it frightened the Nephrologists.  It also made everyone move very fast.  So did the impact that it had on her ability to breathe.  So we ran off to the PACU where her kidney was biopsied and her abdomen was drained — of 750 ml.  Then we returned to the PICU to await the results.  Those, being the acute rejection of the blood vessels leading to the kidney.

The good news is that there exists a bigger, better way to fight her body.  It is called OKT3.  This immunosuppressant is yet another way to attack her T-cells.  The hard parts of this process are these:  It makes patients very, very sick.  Imagine the worst flu you’ve ever had.  And then imagine just a little bit worse.  That’s the common response.  The second is not so much a side effect as simply the facts.  Kajsa is temporarily devoid of one of her body’s primary lines of defense, the T cell.  So she is incredibly susceptible to any illness right now.  Especially harmful is Mono, as this could elicit in her body a lymphocytic cancer.  So we are taking extreme precautions.  For example, I am going to take a shower after touching this very public computer.  Then I will scrub with anti-bacterial soap before slathering alcohol foam all over my arms.  This is so that I can hang out in our PICU room and be mom. 

But, Chris was able to come down today.  So I get a break, and he get’s what he needs the very most…the ability to be there as Kajsa succumbs to the rigors of this highly invasive therapy.

And she has.  She began her first treatment this morning.  And she’s pretty pitiful.  But she’s also getting a good amount of rest, which is one of the most beautiful sights imaginable right now.  Our social worker called Chris’ work to let Human resources know just how serious this all is.  They were, of course, very understanding and accommodating.  He can stay as long as needed without worrying that his job might be endangered.  So as far as that goes, it’s just a matter of seeing how long we can stretch a dollar.  I’m sure he’ll be heading back after the weekend.  But this at least gives him time during the hardest part.

So we’re in the PICU for the 10-12 day treatment.  Then we’ll see where we stand.  So yes, I will accept the ‘relievers of boredom’ from you who have offered.  Because, man, is she bored.  I am too.  But at least I’m old enough to know why, and to see that there is a greater purpose to our odd circumstances.  Furthermore, my boredom isn’t peppered with pain that needs distraction. 

So it is with great faith in people’s ability to not take advantage of personal information that I release ours.  I thank you in advance for any cards, photos, and/or kind words of encouragement.  They may be sent to:

Kajsa Bupp

c/o Phoenix Children’s Hospital

1919 E. Thomas Road

Phoenix, AZ 85016

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16 thoughts on “There’s more but the library’s closing…I’ll write again tomorrow…

  1. Know that you remain constantly in my thoughts and prayers. Can you think of anythng – videos you don’t have, etc. that would be helpful to Kajsa in eliviating the boredom and stress? Thank you for sharing and I am so glad that Chris is there with you. Hold on to each other and feel the love of the rest of us.

  2. oh my goodness! i haven’t checked on you in a while and i’ve missed a lot. have some catching up to do, but i just wanted to give you a big (((((((HUG)))))))). please know that i’m keeping kajsa, you, chris and your family in my thoughts and sending out lots of positive energy to you all tonight.

  3. I think you know how much we care about all of you. I just hate that you are having to go through all of this.

    I have to ask. Is that a beleaguered ‘T’ cell in the photo at the top of this post?

  4. I just wanted you to know that I’ve been thinking (and reading!) about you & your daughter and truly hope for the best possible outcome. As an infant, my daughter spent several months in a PICU and it certainly wears on you after a while. Not to mention totally distorting your perspective.

    Anyway, thinking of you.

  5. I am glad Chris was there to give you a break. I think now more than ever you need that little bit of time to reflect and pray.

    You have been in my thoughts. I will see if I can find something for Kasja, but I can’t make any promises. Money is tight right now. I will try to send a card though.

  6. Rowan, my heart aches for Kajsa, you and Chris. Sometimes all you can do is say CRAP!, have a good cry, and keep chugging along. I’m glad you’re feeling our prayers and love vibes and I hope they help a bit in the chugging process, but I still wish that we could all transport there (without any of our germs) to wrap you all in hugs and offer our shoulders. Damnit… this stinks!

    Pass on a hello and I love you to Kajsa from Auntie Heathooo and get/give a big ol’ bear hug to my bro.

  7. Will anything I send be able to be decontaminated? I would hate if I sent things that made her more ill. Not that I am going to send you dirty stuff, I am just an extreme worrier, you know.;)

    I will put together a package and get it sent this week. Give the girl whatever love you can give her from me her cyber auntie. I am thinking and praying for her. And her family.

  8. Great. A special-just-made-for-Kajsa movie is on the way. I hope it goes some way to helping her feel less lonely, at least. Geez. It is so hard.

    OKT3 is some tough stuff. No fun whatsoever. And I know you must be worried sick. I know that you know that all of this is to move toward health and a better life for Kajsa, but I also know that just knowing this doesn’t necessarily make it any easier. But that being said, all we can do is send you whatever sunshine we can.

    Thinking of you all.

  9. I will continue to pray for your child. I am a Transplant/Renal nurse the University of Tennessee Medical Center. I know all about OKT3 and I will pray it works for her. We use Thymoglobulin or simulect. Save the OKT3 for rare cases. I’m on the adult transplant floor, children stay in PICU. I know they do things different with the children.
    It is not the norm, but not unusual either that a abdomen has to be drained after a transplant. There’s blood that sometime accumulates in the peritoneal cavity during transplant. That can get a little infection and cause fluid to accumulate. We just had to reopen a TX patient, drain, wash out, then reclose. It happens. His kidney and pancreas are working just fine. We do pancreas transplants too.
    Hang in there, never underestimate the power of prayer and positive thinking! I’ve seen it turn the worse cases around!

  10. I’m thinking about you all the time. I just can’t imagine how hard this is for all of you. I hope Kajsa is as best as she can be under the circumstances and that we’ll hear some good news soon. Almost have a package ready to send out to you – thanks for the address. *Big HUGS*

  11. Thanks everybody. It’s great to hear from all of you.
    Yes, dad, that’s supposedly a T-cell.
    Shelli, I think things can be cleaned. We borrow movies and games from the playroom without concern.
    Moreena, just thanks. It’s so good to get the skinny from an eperienced mama.
    Miriam, I want to just read about your baby – not drone on about mine!
    Most everyone else was lending support and love…I thank you ALL! It means so much to get away and read all your well wishes.

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