For some reason it keeps getting harder to write. It is not really that I am tired, rather I think that it is more that with each passing day I get more and more used to the life that we now live. As a result, medical stuff does not seem like it is really worthy of writing about. I know that all of my adoring fans do not live with it everyday like we do, so I guess I will push on……woe is me….(I have never really tried to sound like a victim before. How did I do?)
I don’t remember the last update that I gave, and as I make it a point not to go back and read previous posts, I will just have to pick a point and start from there. If you feel lost, drop me a line and I can fill in the blanks.
I think in the interest of being the slightly off center person that I am, I am going to do this update backward. I will start with the present and work my way back to the starting point.
Cole is gearing up for his stay at UCSF. For those of you not in the know, the down and dirty procedure for the UCSF stay is as follows: 1)super high (much higher than any of the other rounds) dose of Chemo for 3-4 days; 2) 1-2 days of rest; 3)Stem Cell Transfusion (they are his own stem cells and will, apparently, smell very much like creamed corn. Modern medicine is amazing); 4) recovery.
We are also part of a study. The study has two test groups. One group does one cycle of steps 1-4 above. The other group does two cycles. From a purely selfish standpoint, I am hoping for the one cycle so that he can get out of the hospital as quickly as possible.
Cole is really excited about one aspect of his UCSF stay. Uncle Chris has designed (patent pending I am sure) a D&D campaign for Cole and the cousins to play. Excited is not really the right word. Giddy is probably more accurate.
Elisa, Cole and I are going to UCSF tomorrow (Thursday) to sign all the consent forms and do whatever other medical stuff needs to be done for Cole to get ready for the (as of right now) next Tuesday admission date.
These last two weeks are been filled with a bunch of doctor/clinic visits and tests. They were all supposed to be jammed into the previous week, but one test (bone marrow) had to be pushed a week so that his platelets could get to the right level. Also I totally dropped the ball and forgot to give him the potassium drops that are needed to protect some organs from the nuclear injection that he gets for the MIBG. Despite those minor setbacks and the two transfusions (one platelets and one red blood cells), Cole finished all this tests this afternoon. They even threw in a bonus 3-D test. It appears that he has all 3 Dimensions after all. Good for him.
Other than that, we have been enjoying the wonderfully warm weather in
. Elisa is out of school. Although the week right after school got out (cuz she is a glutton for punishment…why else would she have married me), she attended a week long class that was designed to increase her technological savvyness in the class room. She is now the queen of Google Docs. San Mateo
Cole, too, has been working with wood. Fortunately (and yet way more unfortunately because he has already surpassed my abilities) he actually tries to build things. He has currently built a water plane and is working on a lemonade stand. He is such a sophisticated carpenter that he has even hit his finger with a hammer (real, not plastic cuz dats how we roll).
Uncle Chris’ team comes out at the beginning of July, and we are all eagerly awaiting their arrival. Chris was able to secure (though means that are better left unsaid partially because this is a family blog and partially to avoid incriminating evidence reaching the D.A.’s ears) from the UofA A.D. a basketball signed by the Elite 8 UofA basketball team which includes very soon to be drafted Derrick Williams (not too late to change your mind and stay another year.)
So while we wait for UCSF to happen, I ask that you raise your glasses and toast Cole, NBA All-Star.