Fries are done

Thursday, September 21, 2006

Does it get better than this?


Wed. morning 9 am appointment for blood counts - you know how that goes.....After dropping Jen and Dante off out front, I had time to drive downtown to the little bagel joint in front of the courthouse, park, order up some egg and cheese sandwiches, reinstall Carina into the car seat, drive back to the clinic, park, extract Carina, stroller, bag etc, walk from the ass-end of the parking lot all the way up to the front door, down the hall, into the office, where lo and behold, still waiting in the exam room are Jen and Dante. - We had time to eat half the bagel sandwiches before the nurse came in to take his blood.

Funny, we can wait almost an hour to be seen, but it only takes 7 minutes to do a Mass Spectrometer Analysis.


Wait, there's more.
"Well, his counts look great, so he will definitely be admit
ted today...." (finally some good news: ANC 8000!, WBC = 14.8, Platelets = 249. Two days prior he was at 1600, 5.7, and 92. Behold the wonder of Granulocyte Colony-Stimulating Factor) "....but we'll have to wait to hear from the floor when his bed is ready, so just hang tight in here, and we'll let you know." - 45 minutes and two tantrums later, we get to move to admitting, and eventually upstairs to our new room.

It gets better.
Now, we knew it was going to happen sometime, but as I mentioned before, we were already having a two-tantrum day, so we were a little on edge; when we find out that we have to share a room......
Now, many of you have kids, and some of them are toddlers and you know what I'm talking about; those of you who have older kids have blocked out much of this
pain - like childbirth - but for those of you who don't know, having a 2 year old is a harrowing experience unto itself. Add to that the fact that he is tethered to an IV pole with 3 ft of surgical tubing and you have a recipe for a power struggle that makes Saw III sound like Weekend At Bernies 2. And by the way, meet the Nelsons, they just found out 10 minutes ago that their teenager has bone cancer, so maybe you could give them a few minutes....

Not to diminish the reality of their pain. On the contrary, the last thing I want to do is compound their misery by having my 2 year old throw an epic hissy fit for the next 25 minutes, while they contemplate the mysteries of the universe on the other side of the privacy curtain. I've been there. As recently as last week, in fact. So you can imagine my concern when Dante decides that no, the Elmo Button Book is no longer entertaining and he must have the New Elmo Button Book. Enter tantrum # 3....

Yep, you guessed it. It continues.
By morning there will be 3 more big tantrums, and if you count Carina howling in my ear for 20 minutes (she got her immunizations on Tuesday) in the Parent's Lounge (like I'm ever going to be relaxed enough to "lounge") while Jen put Dante down for the night, I think you can count 7 total on the day. During one of these tantrums, a case manager comes in to discuss the prescription for the home injections that we are supposed to give our 2 year old daily, but that will, I'm sure, be a whole other entry.

The Silver Lining.
By late afternoon we were fortunate enough to have a couple of the nurses and the Child Life Specialist advocate on our behalf to the Charge Nurse. Who was very understanding and fortunately, there was an open room and we were able to get moved in there
for the night. Didn't stop the tantrums, but at least we weren't freaking out the new kid. Unless he could hear Dante down the hall....

....Oh, and they were able to start Dante's chemo at 5:30pm, so he was pretty much finished by bedtime. Didn't stop the tantrums, but at least the machines weren't beeping all night....


Currently.
We are in our third room in 2 days - we were moved, yet again, this evening. This bodes well though, for a couple of reasons: 1. Dante only had 2 or 3 meltdowns today and they were not of the Chernobyl variety. 3-Mile Island, perhaps.... 2. His new roommate is a cute little Ecuadoran girl who is very quiet and whose family speaks almost no English. They have been very accommodating as we squeeze into their room. 3. She is roughly the same age as Dante so if s/he does freak out, we all understand completely. 4. I think she's getting discharged tomorrow, (this may not bode well).

Closing Thoughts.

Does it, can it, get any better than this? Because I doubt it could get worse......















.....But I know that's not true.





Maybe it's because we cut his hair...

9 Comments:

  • Sending BIG hugs your way.
    I'm off for a night spent work with cardiac patients, who some may be not much more(or different) than an older version(of Dante) -- on the hissy fit site as they too are confused and DO NOT want to be there.
    Thank you for allowing us to be there, at least in spirit and to be able to pray for Dante and all of you family.
    Katie

    By Blogger katie, at 1:20 AM  

  • Hi Jen,
    Dante, you and your family continue to be in my prayers. Our school prayer group also prays for Dante. Hang in there...........you are very much loved and cared for.
    Anne Todd

    By Anonymous Anne, at 4:57 AM  

  • Gawd, I feel so badly for you all and wish I could help someway. I sure hope you all get your own room for good and my positive thoughts and prayers will continue for the whole family.

    Kip

    By Blogger Kip, at 5:55 AM  

  • just to let you guys know me and duke are thinking about you. as for the tantrums, i remember 2 boys , one was chris and the other tom, and they had some real good tantrums, so i guess you call that payback, ah yes payback how sweet it is. did you get the pics of duke i e-mailed you. hope dante like them. hope you can sneek in 2-4 naps, or oj, b-12, and some good vits.

    woof woof
    wove duke
    &
    uncle joe

    By Blogger UNCLE JOE, at 6:51 AM  

  • Oh my! I DO remember 2-year old tantrums, even though my girls are 16, 20 and 22. And they never had to go through all that dear Dante is going through. I want you to know that someone all the way in New Brunswick, Canada is praying for you and just wish I could do something, give you a hug even or carry around the baby for awhile.
    Kip's friend Pam

    By Blogger Pam in Moncton, at 7:42 AM  

  • Hi Chris and Jen,

    Tantrums love them. People always look at you like your supposed to be able to stop it. Like you just enjoy listening to you kid scream. Hang in there. He is just as frustrated with all the waiting as you are. I think Dante's hair cut is cute.

    Sue

    By Blogger SueHayesNY, at 9:32 AM  

  • Hi guys, you dont' 'know' me but I am good buddy of Kip and she had shared your story with me. I have been visiting your blog and praying for you all daily. I have a great success story I'd love to share with you sometime, but today is short and I know you are all well occupied with your own issues. However, I just wanted to let you know that things will get better, there will be great days and not so great days, but cherish every one of them, each one is special and unique in it's own way and you will be able took back on those times and be thankful. Blessings and prayers for you and your family each and every day!

    Darla in Idaho

    By Blogger crazydarla, at 12:01 PM  

  • Jen- So Sorry for all the craziness that these hospitals put you through.Yes would think that they would do their best to make your time their as easy as possible,,..and let your child rest. I pray that you will see some light at the end of the tunnel soon!

    TC- Cynthia Gamrot...lost my user id...

    By Anonymous Anonymous, at 2:11 PM  

  • My heart is aching for you guys.
    Please know that tons of prayers are heading your way. Be sure to take care of yourself as well as the kids. Anything I can do to make the load lighter...dinner, babysitting, helping you get work projects done...whatever...please let me know!
    Take care,
    Caroline H.

    By Anonymous Anonymous, at 9:51 AM  

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