Restful time....

We have received our packet of information from the Hutch...

We have one more appointment as a Hem/Onc patient tomorrow and then we are transferred to the transplant team.  We are on the Green team and will meet for the first time on the 27th and the 28th.  There will be a series of tests while they determine whether or not Mary-E is really a transplant team.  There will be everything from blood work to another Bone Marrow Aspiration and a million more tests.  It is almost as if we never did any of this stuff.

After the tests are put together they will decide if her body can take a transplant and then they have to get the insurance company to sign on to the plan.   The Hutch does not like Blue Cross of Illinois very much.  They are known for not responding and for delaying the process by as much as a week.

Now a week might not seem like much time in the regular world but it could be fatal to Mary-Elizabeth.  Every day that she is not moving forward without chemo she can relapse or she could catch  a cold or ........  I don't even want to think about all the "if we delays" It is just an added layer of stress.  I am sure moving the insurance to Illinois was a good corporate decision but then while corporations are now people, they  don't have children that are deathly ill.

So after we wait for some insurance lackey to second guess the Hutch, we wait and wait.  When the waiting is over. 

 Hopefully that will not keep her from being admitted.  She will have three or four days of intense chemo to kill her bone marrow.  When we ask what they will be using, they are very vague and not very forthcoming with information.  Maybe I don't want to know since there is no other option or input.  I will not be picking the poisons during this process.

After the chemo she will have 4 days of total body radiation to kill the rest of her bone marrow.  This will happen only on Monday to Friday so there is no way to know the schedule. 

After her bone marrow is dead, she will be given three small bags of cells.  It is a transfusion that lasts a couple of hours and then....  more waiting.

This will be waiting on a grand scale.  We already know that it takes longer for the cord blood to know what to do.  The stem cells will wander around her body for a while and by the 30th day they should be working.  During the 30 days there is a constant battle to keep her alive.  Transfusions, TPN, fluids, you name it they will be doing it. 

After they baby cells go to work Mary-Elizabeth will have to build a new immune system.  All her shots, all of her prior immunity will have been wiped out.  When asked what she is allergic to, she won't know.  It is like having a baby and a sick one at that.

So......  new adventures. New nurses, new doctors, new team coordinators.  The only person we get to keep is Fred, our social worker.    The hope is that things go well and we get to go back to Hem/Onc post transplant.


There is a tunnel, we have not entered it yet.

On a great note, she was able to go to the Gonzaga game and they won!.  It made her Christmas and maybe her year.  She was able to wear her Kennel Club shirt and be with her peeps and feel normal for a few hours.

Tree is up, the outdoor lights are up, Lily is home from Spokane.  The house will be ready for Santa and the Christmas Cake is ordered.  What could be better.

It is a dark but restful time.  The candles are casting a gentle light and the music is good.  The dark is appropriate to keep us focused on the journey ahead. One we are preparing to take.