CSI-case of the tooth fairy

While I try to keep this blog G-rated, some information requires a bit more of the gritty details.  The bloody show covering Annie and her bed each morning was becoming quite alarming.  It seemed there had to be more than low platelets at play.  Plus she was requiring transfusions more frequently and we had hoped her ATG was going to stretch out the need.  Her nosebleeds seemed under control so the blood had to be coming from her mouth.  It seemed an expert look was in order.  Her lovely dentist was able to see her shortly after my call and ... sure enough, three loose teeth!  After consulting with our doctor-cousin, we learned that yes, the blood loss from the mouth as well as her bruising would cause her hemoglobin to drop more rapidly.  Ah so the mandate to hold off platelet transfusions falls through if the bleeding is causing a need for more hemoglobin transfusions.  Thus off to the hospital last Friday for platelets and an appointment for more today in preparation for tooth extractions tomorrow.  The increased platelet fixes, plus regular use of a clotting medication, has kept Annie and her bed blood-free since last Friday.  Even better, her hemoglobin dropped at half the rate it had been.  She still needed a full, nine-hour day of transfusions today but it sure felt good to know there was a reason behind the increased need for hemoglobin.  We had declared the treatment a failure but this gives a thin thread of hope that maybe progress was being masked by the teeth exodus.  Next appointment on Tuesday.  Until then we'll be readjusting to high-hemoglobin Annie.  This Annie is ravenous and a bit hyper - a stark contrast to the droopy, lack-of-appetite girl of late.

AA & MDSIF

Aplastic Anemia got a little less unknown recently with the public announcement by ABC correspondent Robin Roberts that she has MDS - another bone marrow failure condition.  Research and advocacy for both conditions are supported by the Aplastic Anemia & MDS International Foundation.  We have attended several of their conferences and have been impressed by their active support of providing research grants.  Their website is http://www.aamds.org/  

Katherine's 8th grade class donated some of the money they raised over nine years to support this foundation.  This is a clip of Katherine introducing the foundation and later of Annie accepting their donation on behalf of the foundation.

Annie's results from Thursday's blood test came in Friday at plt 9, hmg 9.1, anc 530.  We had hoped to go until next week before a transfusion.  Unfortunately Annie has had trouble with bleeding in her mouth and last night it became clear she'd need a transfusion today.  She and Tom went to the ER this morning.  I am now convinced that part of the ER doctrine is to discourage anyone from going to the ER.  In our experience everything there takes ten times longer.  Thus although they went at 8:00 this morning and were immediately checked in, they are still waiting for a transfusion.  She has been admitted to the main hospital so this could be stretched into the evening.  They required her to have another CBC and her hmg has dropped to 7.1 so they'll transfuse both.

Now we know if we have any hope of getting through this intact we have to look for silver linings in everything.  So this one's is we're glad to take care of this now so Annie won't have to miss any of her week-long robotics training next week.  She has signed up to be part of the school's first robotics team and had been concerned about missing the training for transfusions next week.  Thus hopefully I won't have to write again before a week from Monday.  As always many thanks for the thoughts and prayers.

Waiting for the GPS to restart

Playing catch up again.  Thursday's appointment revealed Annie needed both platelets and hemoglobin but there wasn't time for both.  Thus she got platelets on Thursday, the needle was kept in but bandaged, and she got hemoglobin Friday.  Next blood test Thursday.

The basic conclusion from the doctor's appointment was that we haven't seen the desired results from her treatment yet but, with the medical team's vacation schedules, it will be the beginning of August before making conclusions.  So, if there is no last minute progress, that means planning for another transplant.  Since, over the years, we've burned through most of the emotions surrounding all this, we'll attempt to take whatever comes in stride.  Until then it's blood tests, transfusions and appreciation for what's going right.

Learning to dance in the rain

We've been a bit mixed around between graduation activities and coordinating Annie's appointments but I finally have information to post.  Her counts Monday were plt 9000, hmg 10.1, ANC 890 and CSA 251.  Her "bleeding events" are becoming problematic so we have a platelet transfusion planned for Friday and a doctor's appointment tomorrow.

Being graduation season I am reminded of a student's yearbook quotation which has helped us a lot.  It is, "Life is not about waiting for the storm to pass, but about learning to dance in the rain."  This is one of the things Annie's condition has taught all of us - that you can't wait for everything to be "right" to find things to be happy about.  I think this has helped Annie stay positive in spite of the challenges.  That's her above doing a tap dance to "Singing in the Rain" with her friend in the school talent show.

Thus, although we're still waiting for some sign things are improving, we're all choosing to be happy anyways.  If we learn anything telling at our appointment this week I'll post, otherwise we'll wait until her next blood test, early next week.

Thanks and congratulations to all our graduates!