Still floating

We've had relative calm since last Tuesday, phew!  Her CSA level was just out of range so they agreed to let us skip Thursday's blood draw so we could give her veins a break.  This is nice not only from a logistics standpoint but also because it relieves us from the unpleasant experience of waiting for the nurse's call giving us her blood counts.  Also there doesn't seem to be much enthusiasm about inserting a line at this point so giving her veins a break was pretty important.  Today's blood draw showed she is still floating down from last week's big refuel but doesn't need another transfusion yet.  Her numbers were hmg 9, plt 9,000, ANC 360 and CSA 332.  We were given the option of waiting until next Monday to test again and we gladly accepted.  Thus we'll hope her body makes it until then, hope, hope, hope....

Grrrr

Although we got all the transfusions in yesterday the level of her cyclosporine was too high (414 and we're trying for between 200-300) so back for a blood draw today and probably Thursday!  Luckily the phlebotomist found a vein on the first poke this morning.  Hopefully our luck and those veins will hold out.  Still researching the internal port options as there are notable disadvantages to each option.

Fill 'r Up

Although Annie kept it together for the weekend she was really running on empty.  Today's hemoglobin was the lowest we've seen (although that's just because they transfused before this point at the other hospital).  The stats are hmg 4.6, plt 7,000 and ANC 240.  So today she's having a major refueling - a bag and a half of red and, hopefully, a bag of platelets.  I say hopefully because she is having trouble tolerating the transfusions and they have to slow the rate to the lowest speed.  This ward closes at 6 p.m. so if she can't get it all in she has to come back tomorrow.  All these pokes have become a problem and she's running out of viable veins.  So again we're looking into a more permanent line.  It's hard to know which type, if at all, since we are still midstream in this procedure and different types are better for different situations.  We'll be gathering information and weighing options over the next few days.  In the meantime we hope to increase her transfusion rate and get her finished today.  We're also hoping to wait until next Monday for labs since her medication levels seem to be in range and, with today's refueling, she should make it a week.  So I'll post if we learn anything new or make any important decisions otherwise no news means she fueled up today and is keeping up her routine until next Monday.

Flip flop

So normally it's us trying to convince the medical team Annie should get a transfusion but today that was flip-flopped.  We got a call in the morning saying Annie should come in for a transfusion as her hemoglobin was down to 5.4 (her platelets were 34,000 and ANC 370).  We couldn't believe it was so low as she had made it through three days of school without complaint and was like her old self last night dancing around the house and singing - something we haven't seen in a couple months.  We were certain her hemoglobin had gone up; why we thought we should feel certain about anything considering our track record is beyond me.  Any how we explained our logic to the nurse and we all agreed to make a transfusion appointment for Monday and have her blood draw at the hospital so she has only one poke.  Thus we'll keep a close eye on her this weekend and hopefully not need to make any hospital visits until then.

Iron Overload

Couldn't pass up the opportunity to add a little more eye-candy to this blog but Annie does have "iron overload." One side-effect of multiple hemoglobin transfusions is an over-accumulation of iron in the liver.  So last night Annie had a previously scheduled MRI appointment.  Thus she spent 50 minutes in the noisy "doughnut" watching the movie Tinkerbell.  A pretty ho-hum hospital visit by our standards, thank goodness.  Her blood draw this morning was also uneventful however they won't have the lab results ready until some time tomorrow.  Thus all quiet on the western front for the moment.

ER

It's just because it has been 24-hours and I am so grateful to have had dinner and be in my house that I can  consider writing about last night.  Now maybe if George Clooney had been our doctor things would be different but....

6:30 p.m. Sunday night, putting dinner on the table and Annie starts crying in the other room.  It's the "bleeding event" we've been dreading.  We alternated pinching her nose for 30 minutes but it kept bleeding, really badly.  So we called the hospital ER and arrived by 7:30.  Although we got a bed pretty quickly it wasn't until 9:30 that she got her platelet transfusion.  Three hours of bleeding and pinching.  Three pokes.  Six hours since anyone had eaten.  Nightmare.  Finally home at 10:30 p.m.  No dinner.  Everyone wiped out.   Blood counts were plt 8,000, ANC 490, hmg 7.1.  Really nothing nice to say except I'm glad it's over.  Next post Thursday, I hope!

Chaos theory

Annie ended up having a red cell transfusion yesterday and, when not scheduled, these take a long time.  Including driving time, it was a nine-hour process.  Since we've been in this phase for a while now some patterns are emerging.

Based on research with cancer patients (who also often need lots of transfusions) transfusing platelets, unless the patient is uncontrollably bleeding, actually impedes the body's ability to produce platelets on its own.  Thus this medical team is comfortable letting her platelet level go to "zero." This is new ground for us and taking a bit of an adjustment.  Similarly there are risks to receiving red blood cell transfusions, as well as the body getting lazy about making cells itself, so the team wants to wait until she feels crummy to give those.

The inherent problem with this plan is that it means we go along until the next traumatic event happens.  Then chaos erupts with a bleeding or pained child, last minute changes of plan, fighting traffic, trying to find a nurse and bed at the hospital....  When I presented this reality to the doctor he basically acknowledged that it's just how it has to be.  Nonetheless the rest of the appointment was summed up by, "it's too early to draw any conclusions."  Annie did get weekly transfusions for two months the last time she had ATG so we're going to be patient and wait until the end of May to start evaluating whether this treatment was effective.  So until then we'll keep tip-toeing through this kind of haunted-house, always on alert for when the next scary event will send us scurrying.

How low can she go?

Well I wouldn't say we're having a limbo party but Annie has been enjoying her stay-cation.  Although she has been in a good mood, has not been sick or had headaches and is not actively bleeding, her counts were basically down again today... plt 6000, ANC 270, hmg 5.7.  She is also checked for the level of immunosuppressive medicine in her system with a test called CSA.  They want that between 200 and 300 and it has been around 150.  Thus they increased her dosage and it was at 311 today.  Since she has no active symptoms we'll pass on tomorrow's transfusion appointment however she still will meet with her doctor in the afternoon.  Will post what we learn tomorrow.

Thus I'll sign off to the beat of Chubby Checker's Limbo Rock..."Every limbo boy and girl, all around the limbo world, Gonna do the limbo rock, All around the limbo clock, Jack be limbo, Jack be quick...."

Stay-cation

Somebody forgot to pray... Sunday morning Annie woke up sick.  First a headache, back to sleep.  Then a stomach-ache, back to sleep.  Then threw-up and ... well by this time we must have had a critical mass of people praying at Easter mass as then she felt, great.  In fact she spent the rest of the day munching and playing with her cousins.  Roller coaster.

Today's labs were back down.  Plt 8,000, ANC 450, Hmg 5.6. However, since the medical team doesn't want to transfuse unless something bad is happening we plan to try and stretch it out until Thursday.  Annie is having a stay-cation at home and seems quite happy to eat, listen to books on tape and recline. Thus about the most low-risk days we could conjure up.

No news is good news and will report Thursday's results.

An ominous cloud

Two nights ago Tom became feverish and since then has been in the throws of a flu.  While we all get our flu shots first thing, there are many strains, and things still sneak through.  He has been sequestered away from all of us and I look like someone out of the movie "Contagion" when I enter his room.  I wear a mask, rush in, drop off food, leave and disinfect myself.  The problem is the worry of whether we got infected before we knew he was sick.  Thus lots of extra healthy habits and visualizing killing off any virus before it multiplies.  So it's mostly learning to cope with the specter of the rest of us, especially Annie, getting sick.  We were told five days would be the incubation period so if we can make it to Easter hopefully we can breathe a sigh of relief.

Annie is spending the day getting her red blood cell transfusion.  We are in an area we've never been in before.  It is called "Fast Track."  Sounded promising to me until I discovered it was just the child-friendly name for Urgent Care.  So much for the drive-thru transfusion I was imagining!

Well the roller-coaster twisted again and we were just handed her lab results.  Her hemoglobin went up a bit to 6.6 so they want to not transfuse.  ANC also up to 540.  Plt down to 31.  Also tapering off prednisone...bye-bye puffy cheeks.  Thus we're going home.  Called to tell Tom and his fever has broken.  So just the specter remains until we learn more after Monday's labs.  Hopefully we'll have nothing to report until then.  No more flus developing would be a great prayer - thanks!

Buddha Baby

I know you think this is a picture of a Buddha statue on the left and Annie on the right but it's an old picture and now Annie actually looks more like the statue than the girl.  And that's thanks to prednisone.  All the munching and puffing has temporarily physically changed Annie and all the recent experiences continue to mature her emotionally.

Today's blood test showed another drop in counts.  Hemoglobin down to 5.8, ANC to 400 and platelets to 45,000 however that number is due to her platelet transfusion on Friday.  Thus she has a red blood cell transfusion scheduled for Thursday.

While all this sounds unpleasant to us, she retains a joyful attitude and is genuinely happy in spite of it all.  Will report in after her blood test/transfusion Thursday.