Controlled Panic

That is my most current state. It is a state in which I can have a pretty good weekend (about which I shall soon blog) .

Since my last post I had another crappy day in which we assumed Nathan would have a neccessary test on Friday or Monday and then were told it couldn't be done until August 16 and his local doctor suggested a round of chemo while we waited. Luke and I both decided that wouldn't do and were trying to figure out if there was another Children's hosptial within driving distance we could go to and get the test done. I called his doctor to tell him we were not going to settle for an impromptu round of chemo and he told me that they found a different hospital in Denver that would do the test (GFR - nuclear med version ) but not until Wednesday. So - that was good(ish) news except he really should have had chemo 6 days ago (well really about 20 days ago) and best case scenario has him starting 5 days from now.

So - I have this constant vision in my head of all the cancer in his body rapidly dividing/multiplying. His last round of chemo was June 18. Surely the cancer is starting to grow and it is making me sick thinking about it.

Some of these delays were unavoidable but I TRIED to get a plan in place in case Nathan had delayed counts and I couldn't get either doctor to plan ahead and if his cancer has gotten out of control and cannot be beaten back because of this I am going to be so angry.

Emotionally tired

Yep that's me.

We had two different treatment scenarios for Nathan today. The first half of the day we were going to New York next week. The second half of the day we were staying here and doing some scary/harsh chemo for Nathan. Contemplating both things has left me done. In fact I had a beer for dinner and it as affected me like it was a double shot of whiskey.

Add this to my constant question of how you deal with a child who you know is going to die sometime in the next few months/years but is not "dying" and is in fact feeling great. How do you live with that? I guess what I have come up with is what we have been doing all along. Just try to live life as normally as possible. It really is the everyday little things in life that matter. My victory over this beast is to live the best most life I can which will give Nathan a childhood as close to "normal" as is possible. That said - it takes more effort than you all can imagine to do that.

To that end we went off to the swimming pool and I left Luke manning the phone to talk to the oncologist about Nathan's plan. The kids had a blast. Sure - Nathan stood out with the whole lack of hair thing - but he didn't even see the stares.

Another Lauren crawling video

I just have to share Lauren's newest way to crawl. Previously she was on her tummy pushing with one foot. Now she is on her knees but still insists on using a foot.

Nerd ABCs

I swiped this off of blogging baby.

http://tiffanyard.com/nerd.htm

I love this idea - I guess I am a nerd!

Under the weather...again

I have another breast infection. Sorry if that is TMI! It isn't too severe - it kept me up alot in the night but I was still able to take Nathan to the doctor today. I went in to my doctor late this afternoon and I had high blood pressure as well - she chalked it up to all my stress.

So - I will take some antibiotics and hopefully feel all better in a day or two.

Four more months (or so) of breastfeeding - I hope this is the last bout!

Bulk

I blogged in the past about my addiction to sea salt bagel chips . Last week I made a dangerous discovery. While at Sam's Club I discovered a 23 ounce bag of them! I usually buy 6 ounce bags. I got 4 times the amount for about twice the price. Of course, this is not really a good thing so I hope it is only a one-time buy or else I might turn into a bagel chip.

Do I have my honorary nursing degree yet?

* Warning - images not for the needle phobic!*

Today I had to access Nathan's port at home. We numb his skin first with a cream so the needle going in barely hurts. If you told me that some day I would be able to stick a needle into my child's chest without a second thought I would have told you you were nuts!




















The before pictures would have been of me spending about 10 minutes drawing medicines and flushes into syringes and setting out all the supplies for the port access.

Afterwards, I put some gauze under the needle and a tegaderm bandaged of the the needle to protect it. He can keep it in for a week. I gave him a medicine that has to be pushed in over 15 minutes so I just sit and watch the clock and very slowly push in 10 mls. Then I flush the port with heparin to keep it from being clotted. Correction - HE flushes it. He insists on doing all the syringe pushes that he can.

Chipotle chips

Luke and I had sone Chipotle the other night. We love their chips and guacamole. While we were waiting in line I witnessed them preparing their chips. They actually take a big bowl of chips and squeeze several limes over them, toss them, add some kosher salt and then toss them again. No wonder they are so good and also why sometimes you bite into the saltiest chip you ever had.

Prison-Hospital

or something like that is how Luke described our house right now. I think he is jealous because I had a furlough. I went to a children's birthday party but left the kids and took the baby. This party was hosted by a good friend attended by several other friends and it was kind of nice only tending to a baby and not fetching drinks and plates and corralling my own kids.

Current health situation:

from sickest to wellest:

Luke -pneumonia - actively feeling bad
Nathan - neutropenia AKA no white blood cells - but curently fever-free though we are not holding our breath. Is not allowed to be out in public.
Julia -recovering well from the pneumonia - tonight we are not putting on the oxygen and will test her before we go to bed.
Me and Lauren - tie - we both have colds but both are feeling much better. She cut a tooth last night and I am lacking sleep and fighting off a breast infection.

I am toying with the idea of another prison break tomorrow morning with Lauren to go to church. The jury is still out.

We will soon be joined in the prison by my in-laws and so maybe it will seem more like a half-way house instead since it will be alot easier to leave at will. Either way it will be more enjoying to be in it with their company.

Can't escape it

So - we have been doing the mail DVD rental thing again. I received Sisterhood of the Travelling Pants and decided to watch it last night. I figured it would be a light, easy movie to watch . A minor spoiler follows.

About halfway through it happened....

A character is found to be dying of Leukemia. Huh? Where did that come from.

Geesh - if we can't escape childhood cancer in a movie like that, where can we?

Sigh

Too tired to blog

Yup - I just am. I want to be blogging but my mind is mush.
What's the first thing to come to my mind? I tried this a minute ago and it was the bag of platelets Nathan got today. They were about the same color as the clementine IZZE I am drinking right now.

Speaking of IZZE - the one I drank last night had a bottle cap that announced they are now making apple IZZE - I am very excited to try it as sparkling apple beverages are my favorite.

Why relapse is better

Ok - so of course relapse is not better than NED (no evidence of disease). But - there's a silver lining to every cloud right?

Nathan: Mommy I am too tired to color
Susan's internal voice: Nathan is tired - maybe it is cancer?
Susan's second voice of reason : Remember, he does have cancer again
Susan's happy side: Hey - I don't have to worry about every little physical complaint Nathan makes anymore being a relapse. He HAS relapsed. Hey - it is kind of nice not having to worry about a possible relapse anymore!