FAQ's

Why does Sammy have to undergo chemotherapy?  
We need to wipe out all of Sammy's existing marrow and cells to create a blank template of sorts in which to graft entirely new bone marrow (kaeden's) to and create new healthy cells.

how long does chemo last?  
7 days.  They refer to the date of the actual transplant as T0.  The first day of chemo is referred to as T-7, as in T minus 7.

So T0 is the transplant date?  What happens on that day exactly?
Kaeden will come up for an outpatient procedure to remove his marrow and prepare it for donation.  He will be put under anesthesia for an hour maybe more.  They will insert a hollow needle into his back near his pelvis bone near the hip on the left and right.  They 200mg of marrow, and each "plunge" removes roughly 5mg.  So they scrape it pretty good when it's all said and done.  His recovery is anticipated as minor and more or less discomfort, for a few days up to a week.
Sam will then receive Kaeden's cells via a bag IV very similar to a transfusion.  This part of her journey is easy.

Given Sam will have no cells through chemo, she sounds vulnerable to disease/infection etc.  How is that handled?  
We will be placed in isolation essentially where visitor list is extremely limited to keep chances of outside germs low.  Nursing staff is a special BMT staff and won't rotate like normal nurses rotate, to keep continuity with us and the patient (sam).  Stacy and Sam won't leave the room for 30-45 days after T0.  Dad and Baba will rotate in and out during that time.  We have been advised to shower at home before we come, drive straight to the hospital, encounter as few people / places as possible before arriving.

Wow, Stacy and Sam really can't leave for 30-45 days?  
Yep.  Pretty intense.  We've prepared to have her room be decorated and put some of her toys in there for her to play with after the transplant.  Doll house, kitchen, stuffed animals, elmo toys, etc.  we also had a little doll with kaedens' full head to toe picture on it made, so she can snuggle the doll if she misses her big brother.  We also have mommy and sammy dolls for kaeden.

Can we come visit / send flowers?  
Unfortunately, no.  Flowers are on the restricted list, and the visitor list as mentioned is very restrictive.  We very much appreciate all the kind thoughts and words we've received.
  

When did you find out something was wrong?
Feb. 1st.  We took her in for a routine pediatrician appointment for a virus and ended up in the ER after the doctor noticed blood spots in her throat and ears.

Generally speaking, what is going on with her?
She has been diagnosed with Super Severe Aplastic Anemia.  Succinctly, her bone marrow is failing to produce any cells. Bone marrow in our bodies produces all three types of cells we need everyday.  Red Blood Cells to carry oxygen throughout our body, White Blood Cells to fight off viruses and infections, and platelets which stop any bleeding.

Okay, so how long can you go without making cells?
Red Blood Cells (RBC) and platelets can be transfused.  White blood cells (WBC) are not.  The half life of a RBC can be up to 120 days, and thus, needs transfusing the least, once every ten days.  When she is running low on RBC she becomes very lethargic and tires easily.  Platelets, we have been transfusing her with at a rate of twice a week.  

What is causing this to happen?
As of now, it's idiopathic.  Meaning, we don't know.  We may never know.  Or it is possible it may be a genetic abnormality, whereas, both parents were passive carriers of an abnormal chromosome, and then it could have been passed on to Sammy.  In that case, Sammy would still only have a 25% chance  (50% x 50%) of getting it from us.


If this is a genetic abnormality, how does it change things?  
Simply speaking, only one genetic abnormality is a game changer, and that is Fanconi Anemia.  If she has Fanconi Anemia, the drug regimen changes significantly and the road ahead becomes more difficult.

Does she have Fanconi Anemia?  
We found out last week that she doesn't.  (Thank God!)  Children with Fanconi Anemia usually have some kind of obvious birth defect.  They also pass large amount of nutrients through their urine resulting in stunted growth.  Sammy has no defects, and was in the 100% percentile of weight and 98% percentile of height.  But there are children with no signs whatsoever, and have Fanconi Anemia.

When will you find out if she has FA one way or another?   
The results of this test have been the thorn in our side since day one.  We can't go to transplant without knowing this.  Normally, a simple blood draw, and about a weeks time is all it usually takes to determine whether a child has FA.  However, given Sammy's super severe anemic state, and her complete loss of cellularity, this has proven very difficult.  We have had a total of three separate blood draws sent to two different labs all of which have failed to yield results on account of her miserably low cell counts.  Add in time waiting between each blood draw and you have a dragged out process.  Mid March we finally had a skin biopsy taken from her shoulder and sent it to give us results.  We are still waiting as of now (Mar 23).  That test was estimated to take 4-6 weeks. (Mar 27th, she was negative for FA!!)

What's the "cure" for this ailment?  
Regardless of causation, aplastic anemia is best cured/treated with a stem cell transplant from a matched donor.

So, if all Aplastic Anemia is treated with BMT, then does it really matter what the cause is?  
Yes, and no

When will Sam get her BMT?  
Chemo takes 7 days.  They refer to the first day of chemo as T-7.  That starts this Thursday April 3rd.  Then, BMT (or stem cell transplant as it's called within the last few years) is April 10th.