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.
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.
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.
I swiped this off of blogging baby.
I love this idea – I guess I am a nerd!
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!
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.
* 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.