Odette Update

The main reason I even started this blog was to keep people posted on how Odette was doing so that I didn't have to answer the question, "How is Odette?"  a hundred times a day.  So, I figured that I better give an update on what has been happening lately.

I have discovered that "Your daughter has leukemia" is like a rock that is dropped in a still pond.  It completely disrupts the stillness and sends out all sorts of ripples.  Odette having leukemia is huge, but there are no areas in our life that haven't been touched by the ripples from this dropped rock.  It has completely overturned our lives and what was, is not any more and what wasn't is more like the norm.  Super frustrating for all parties.

Odette might have an immune system now, more than she use to, but we still don't want to risk taking her anywhere to catch something.  Besides, who wants to take a puking kid that is almost always attached to a tube anywhere anyway?!  So, it's not like I can say, "there is a good sale on chicken at Macey's, lets go shopping today."  I have to really plan out our food needs so that someone (Ken usually) can stop and get stuff.  All activities have to be planned when both adults are around so that one can take the "big" kids while the other stays at home to catch barf.

Yes, you might have figured that Odette is still puking.  While not as much, it is about once a day still.  She is being fed 27 calorie formula through her feeding tube and she doesn't eat anything by mouth yet.  Every now and again she will act like she wants something, but then she shakes her head and doesn't let you put it in.  Good news is that she does frequently like to sip water out of a cup...I guess that can be considered progress.

Right now Odette is running a little low on blood, which is super stressful because I worry if I should take her in or not.  Kind of like "Does my child have an ear infection or just teething?"  I hate to second guess myself, but as we have learned well, better safe than sorry!  The sign is she is really sleepy all the time, but when Josselyn is around she doesn't want to sleep at all, low or not!

On Monday, I will be taking Odette in to get a spinal tap.  This is where they put in three types of chemo drugs into her spinal fluid to kill any leukemia cells that may be hiding out there.   They put her out for this and it is about a 10 minute process.  This time she will also be having a scope done to see if there is anything that is causing the puking.  I guess it is like a camera that they put down the throat, to the stomach and then to the intestines.  They say this should only take an added 15 minutes.  She will also be getting some other chemo and then we should be free to go home.  (As long as, you guessed it, she doesn't get a fever!)

Odette is loving being at home and has finally figured out how to crawl and is trying to figure out how to go up the stairs!  I am so excited that she is moving, but forgot how much more work is involved!  Now, if she could only walk and then she wouldn't be touching the floor with her hands!  She is still the baldest kid I have ever had, but she has some fuzzy stuff growing back in!  It is a really light color for now...maybe a blonde child?!  She is so happy and loves to imitate everyone.  Her favorite is to squeal(scream) every time Josselyn starts to talk!  While having Odette at home is no cake walk, it is definitely worth it!