Holding Tight

Wednesday, June 27, 2012


Dillon has had a couple of challenging days.  He is fairly healthy...per se....but his mood swings are severe because of the high-dose steroids he is on.  The steroid is supposed to shrink to tumor to avoid airway symptoms.  We all know how well the last steroid worked.  Well, 3 days ago Big D coughed ALL day long; a phlegmy junky cough that was persistent all day.  He could hardly speak or eat because of this crazy cough.  I feared pneumonia...but the doctors assured me that it was not pneumonia because he would most definitely have a fever and they would be able to hear it in his lungs on one of the zillions of physical exams that they do every day.  So, the logical answer; irritation of his airway and tissues from the tumor.  Thus, the beginning of another course of steroids.  At first they said 14 days on and 14 days off....but that has been modified to 7 days on, 7days off....repeat.  The mood and energy effects of steroids are devastating; so the psychiatry team has become involved and Dillon is on yet another medication for the mood swings and agitation.  Yes, there are risks.  Yes, there are side effects.....but we need to allow this boy some semblance of his regular mood so he can rally his spirits to fight this huge monster in his body.....so we agreed to the risks.

Two of the medications (the mood one and the steroid) cause increased appetite.  Kids will eat to the point of physical pain, nausea, and vomiting.  They can then develop high blood pressure, cholesterol problems, and diabetes because of the obesity.  These drugs sort of turn off the "I'm full" signal from the brain.  One more task we have now, is not allowing Dillon to overeat.  He will be allowed to eat quite a lot because he lost so much weight but we do have to be careful and now allow him to indulge in all the crazy, unhealthy cravings that will come.  I explained this to him today when he was in one of his periods of 'good mood' and he seemed to understand; however, when it was time for dinner he said he was afraid to eat at all because he did not want to get fat.  It required more talking and explaining that he has to keep up a good level of nutrition but not too much and not too unhealthy.  So, yes you can eat that quesadilla with sour cream but you cannot have 2 or 3 of them and if you are still hungry after a normal sized meal you can have some fruit or veggies or other healthy food.  Oh.....I got a glare and he dug in (guess the moment of good mood is over).  Oh yeah....the whole point of this thing was to say that he is coughing much much less than he was before the steroid started.....SO LETS JUST ASSUME THAT THE MASS IS SHRINKING.  That is what I am believing!!!!!  Join me...it is fun!!!!

We have received innumerable offers from kind and generous friends and family for bone marrow.   So I thought I would give you an explanation of the process in my layman's terms......

The way it works is they ONLY test parents and full siblings.  It begins with blood type and a few cellular markers via a simple blood draw. If that is a match, then they do another more in-depth blood analysis; and if that is a match, then they check the marrow....which even at that point may or may not be a usable match. The amazing human body is so crazy complex.   To check the bone marrow it is a 'simple' outpatient procedure where they insert a big old hallow needle into your iliac crest (your hip bone on your back) and they draw out a little bit of the marrow. 

If one of us three are not a match, then the process goes to a search at the national bone marrow registry.  If there is not a match there, then it goes to the national cord blood bank.  If there is no match there, then they go to an international search of both marrow and cord blood.  

The process is costly and time consuming, so if the immediate family does not match then they go through the above process.  I suppose it would just take too long to coordinate getting samples from all the folks that would like to try to help Dillon directly.  

If you are interested in this area of supporting us, you could offer to be in the bone marrow registry and maybe you could help another family in a terrible medical situation.

Well, off to bed.  Dillon wakes up a lot throughout the night, so I gotta get to bed early in order to get any level of rest.

HUGS to everyone!!!