Coming Home

We got the official word yesterday that Madelyn can come home!!!  We are BEYOND thrilled about this.  Especially for Madelyn.  


If all continues to go well with her treatments AND she doesn't get sick, for the next two phases of treatment we should be able to be in Anacortes.  She started the Consolidation phase of her treatment yesterday with a Lumbar Puncture placing chemotherapy in her Central Nervous System and chemotherapy via her port.  She also started an oral chemotherapy that Peter and I give her everyday.  She is still hurting a little today and we want to see how she reacts to the new chemo, but we are hoping to bring her home tomorrow Wednesday returning most likely on Sunday.  We are still waiting for our treatment schedule for the month.  She has to have weekly Lumbar Punctures...


Her counts were FABULOUS yesterday:   Hem 33 Platelet 319 WBC 7.1 and ANC 2031


A note to all our Anacortes much LOVED ones.  In order for Madelyn to be home, it is very important that she not get sick.  We can't wait to see everyone, but if anyone even feels "a little something funny in their throat" please stay away until you are sure you feel better.  Getting sick is not only hard because her immune system isn't working right, but also because it sets back her chemotherapy schedule.  And something like Chicken Pox is actually life threatening for MJ right now....


We will need to be in Seattle 2-3 days a week for chemotherapy and doctor's visits but the rest of the time we can be in Anacortes.  I'm so glad we have this apartment to come to for our Seattle days.   It really has been perfect.  We have decorated it with lots of drawings and crafts and does feel like a mini-Kuhnlein-home.  We are just so grateful that this complete disconnection from home does not have to continue.  During the last very intense phase of therapy (two months) we will have to be in Seattle again and Madelyn can not be in Anacortes until it is finished.  


Ever since that Dec 28th appointment we feel as though a major weight has been lifted off our shoulders.  It is amazing how much better we are all feeling.  I haven't cried once since that day... and that cry was due to such overwhelming happiness.  IF she has to go through all this SHIT (pardon my french) we are so HAPPY it is working. 


My parents came down to be with Phia during MJs sedation appointment yesterday.  This was very helpful for us and much more fun for Phia.  She went swinging at the park and I'm sure got treats we don't know about :)  Plus this enabled Peter and I to take Madelyn out to lunch, just the three of us, after the appointment.  That was nice.  They came the night before so Peter and I were able to go out with friends. I have a group of friends I have known for years down here from my Chihuly Studio days.  We got together at Senor Moose for margaritas and fabulous mexican.  It was so nice to laugh and see them all.  They are just like family.


Madelyn has been drawing and coloring an amazing amount.  She always loved to do crafts and color, but my oh my.  I think it is her own source of therapy.  And this is also very Madelyn.  Leave it to her to develop her own ways of coping and not have someone else tell her what would be good for her.  Most of the people in these pictures are Lucas, Beckett, Auntie Jill and Uncle Emmett.  I guess we need to arrange another visit with them soon :)  The thing that I notice the most about these pictures, and all the pictures she draws, is that they include people and they include lots of happy faces (on people, on suns, on stars, on moons).  I am so grateful and absolutely delighted by this.