BMT Day +94 Steady progress and a what if

Making real progress

Teri walked 690 + 230 feet today, a new post-MICU record.  She ate ¼ piece of French toast.  She is continuing to have more bladder spasms with the increased bleeding from the kidneys and bladder that is disrupting her quality of life.  To better eradicate the BK virus and reduce the renal bleeding, she is being restarted on ciprofloxacin and cedofovir, and the infectious disease team is applying for compassionate use of a new unreleased antiviral agent. 

Without trying to jinx her prospects, they are discussing home going at the end of next week!  But the team insists that she eat in order that they can remove the NJ tube prior to discharge.  However, having been through one discharge on 4/5, followed by inadequate intake at home, ensuing malnutrition (kwashiorkor), edema (swelling) in lungs, abdomen and all tissues and the resulting downhill spiral of complications… I proposed that she go home with the feeding tube to allow full nutritional restitution during the several weeks I suspect it will take for her to resume full eating.  She needs some meat on her bones.

Why viral challenges now?

Teri only has a few CD4 lymphocytes to combat the many viruses that we harbor quietly and unaware in our bodies such as herpes, CMV, BK.  However under immune compromised conditions, these latent viruses can erupt as has happened.  The antivirals are containing most except for BK until her naïve lymphocytes (from the unexposed baby) become armed and on target.  In children, this happens quickly because of an active ‘sargeant’ thymus gland.  In older adults with an involuted thymus, this happens very, very slowly and the unarmed and undirected lymphocytes remain for months.  

What kind of help does Teri need?

Many, many family and friends are helping on a continuous day to day basis.  Jody and Michelle came today.  Quite remarkably, when we added it up, Tony her brother who left today, takes the prize … he has been here altogether 9 weeks in four trips since the beginning of Teri’s illness – a yeoman’s effort!  We thank you all!

For those who are yet to come, what does Teri need now?

Help with walking/walker, strengthening, and stretching.  Help with getting food, drink, meds, and eating.  Putting cream on.  Mini-massages.  Sharing stories, memories, music…  Letting her nap.  Most of all, listening closely to her because she knows what she wants even if she can’t express it clearly.

What if?

As I catch my breath and relive what we’ve been through in the last year, I pose another unanswerable question.  What if the price of survival from the chemotherapy and BMT was that you could not resume your former personality or regain your former body?   

In fact, that is some of what Teri may be going through.  We don’t realy know how she will come out in terms of her overall health, functionality, mental capacity and most importantly her omnipresent joie de vivre and love of friends and children.  We know she cannot help but be changed by this, but how much so from the Teri we have known, we don’t know, yet.