Praise GOD!!! Lydia is still cancer free! She is doing as well or better than expected in all but one area!  They were thrilled with her motor skills (she WALKED in pushing her stroller).  She can’t walk unassisted yet, but it was huge that she is as strong as she is…and cute.  I dressed her in her pink tutu too.  She was a doll for them.  It was great seeing many of our Seattle friends…even our wonderful lab nurses (who stick babies for a living!)

The dietitian was pleased with her intake.  Lydia is quite the carnivore.  It would be great if she liked veggies, but her vitamin drops will do for now.  She is taking in enough calcium, but I have to make sure that it does not drop off.  I think it is because of the huge amount of radiation that she had.  Her bone growth looks great for now too!  She is to be weighed and measured every three months.  If the slightest slowdown of growth appears, she is to go to an endocrinologist for further investigation and growth hormones.  The radiation specifically effects growth hormones and thyroid.  We have to keep a close watch on her thyroid (which is normal for now) to keep this in check.

Her teeth look great.  I know this strange to be writing about, but there is a STRONG possibility that her adult teeth will not come in, therefore making her baby teeth her permanent teeth.  Only time will tell if any of these things affect her or not, but these are some of the many possibilities that patients like Lydia go through.

According to folklore, if the groundhog sees his shadow there is six more weeks of winter.  Apparently Dr. Woolfrey saw Lydia’s shadow and proclaimed six more months of winter!

Yes, Lydia should have a newborns immune system by now.  In fact when we spoke to the team on Tuesday, they gave us the green light to go have fun, take her out in public, be “normal”, but wash our hands.  When we returned for our  discharge meeting on Friday, Dr. Woolfrey had found a blip in Lydia’s numbers.  Apparently one part of her immune system showed up much lower than expected.  Her white blood count looks normal, but under this deep scrutiny of blood work a low value was found.

Lydia is 100% donor marrow and blood…YEA! But it is taking a long time for her immune system to build back.  Cord stem cells take longer than adult bone marrow donors in general.  Dr. Woolfrey and the team were not concerned about Lydia, just take it easy a little longer.

In fact, her restrictions have been lifted DRAMATICALLY!  They want her to be a “normal” girl.  She can go to the grocery store, the zoo, the playground (and play).  She can play with “well” kids.  She is able to start over with her baby shots now.

Her restrictions basically consist of the following:

  • No preschool for my sons
  • No Sunday school for any of my kids
  • No large playgroups
  • No playing with kids that are sick or have runny noses, stomach aches, etc.
  • No Sun (GVHD is still a real risk and because of the amount of radiation, it can easily produce sun cancer)
  • Wash hands often
  • Don’t let people touch her
  • Don’t play in the dirt or sandboxes
  • Be smart, if anyone seams sick leave immediately

If she gets a fever of 101 she has to be seen by a doctor immediately.  If not her oncologist, then an ER doc. 😦

The good news is NO CANCER!!!!  Six months is not bad in the scheme of things.

They said that her skin looked pristine.  I cringed a little, because that had been said right before she tested positive to GVHD(graft versus host disease) on a skin biopsy.  This time her skin biopsy was CLEAR!  The only hint of GVHD is on her scalp…she has a small flaky bald spot.  It was swabbed for fungus, but that came back clear, so it is guessed to be GVHD.  This will be treated with prescription dandruff shampoo.  If that doesn’t work then a special lotion will be applied.

This will not stop us from tapering her final immune suppressant!  The taper will begin tomorrow and end by August.  Pray for no GVHD to present itself as the new cells get use to her body.  It can take several years for the new cord to feel at home.

So I sobbed like a baby during our discharge summary.  I was so thrilled with the results.  Then an hour later, I sobbed like a baby, because I know the war is still on…and baby, she is fighting.  It is God’s strength, not her own.

As far as God’s strength goes, the Beam family is living on it now.  They truly NEED your prayers.  They lost there precious son Tucker who was fighting leukemia this morning.  Though He is now TRULY healed and in the Father’s arms, the mother’s arms miss him.  His life is a beautiful testimony of faithfulness and love for his KING.

The Brittain Family needs prayer for the Father’s strength as Megan needs more comfort.

Thank you for your faithfulness to pray for Lydia and our friends.  God is so strong and tender and loves these precious children so much.  Let there lives be for YOUR glory LORD.