Diary of a Mad Mom

[HumanRubble]

I have been living in terror since 9/13/10, when I took my 15 yo daughter to the doctor for severe abdominal pain and unrelenting headache. After taking her blood, they came back to take blood from the other arm (did they really think it was going to be any different)

We learned her platelet count was 7, and she was hospitalized immediately. The abdominal pain, incidentally, was totally unrelated - an ovarian cyst. Other than petechiae and bruising that we had been totally unconcerned about, she was asymptomatic. After bone marrow biopsy, we got the SAA diagnosis.

Her brother was not a match for transplant, insurance company drug feet about approving treatment (as if I weren't crazed enough), but finally got ATG underway 10/13/10. Seven days in hospital.

For the first few months, her platelet count hung out around 1 to 3 while we lived in a twilight zone of medication, transfusions, and allergic reactions. The first improvement in her platelet count not related to a transfusion came about 8 weeks in, on 12/7/10 (last transfusion on 11/11). For the next several weeks the platelet counts improved steadily to the mid 60's, other counts crept toward the normal range. I dared to hope.

Platelet count has been stalled out in mid 60's for 6 weeks now. As of yesterday's test, actually dropped by a thousand. Two weeks ago, all but 2 of her other counts had reached normal range; as of yesterday, all were back to abnormal.

Emotionally, I'm back at September 15, 2010. Does this interruption in the improvement mean she's likely headed for complete relapse? Or is there still hope for improvement from the initial ATG course? She is still on cyclosporine, not scheduled to consider a taper until April.

[Ryan Jay]

How abnormal are they? Have they checked her cyclosporine trough? My counts stalled out two months ago, so my hemo decided to joggle my cyclosporine a little bit and all three lines started to cruise back up again.

Sorry you've got to deal with this again.

[HumanRubble]

None of the counts are in the danger range, but her AGC went from 2400 to 1070. Her cyclosporine levels have stayed in the range they want them. But thank you for the idea about adjusting the cyclo, I will ask the hemo about that next appointment.

[Neil Cuadra]

Mad Mom,

Based on what I've read and what other patients have said, your daughter's progress sounds quite positive to me. I don't think your daughter's doctor will say that this is a sign of relapse or failure of ATG.

Platelets are often the last count to rise after ATG, in part because the cyclosporine is keeping them depressed. It's one of the normal cyclosporine side effects. As long as other cyclosporine side effects aren't causing problems for your daughter, you don't want to rush into tapering because if you taper too soon or too quickly her counts can crash and set you back many months. It takes a lot of patience because some doctors want patients to wait 6 months (like her doctor) or even 12 months, before starting the taper. In the meantime, platelets of 60 to 70 are quite livable. Caution about avoiding hard bumps, bruises, or bleeding would make sense. For example you should talk to the doctor before your daughter plays sports and contact the doctor if she gets a nosebleed that won't stop, unusually heavy menstruation, or large bruises.

As patients and caregivers all of us have lived with that fear of an unknown prognosis but I hope you won't let the worst possible outcome dominate your thinking. I think your daughter's progress is very promising and that being transfusion-free and having almost all counts in the normal range is a very good outcome at 4 and a half months. Last year your daughter was in pain, in the hospital, and had life-threatening counts. Now she's out of immediate danger and can live her life mostly normally. That's a huge improvement.

If you talk to other patients, here at Marrowforums or elsewhere, I think you'll find that you and your family have good reasons to be optimistic about the coming months.

[Hopeful]

Hi,

If she has had a recent viral infection, it can take down her ANC, reticulocyte count, HGB, and platelets very quickly. She's had a great reaction to the ATG so far. I wouldn't panic yet! It takes time for the marrow to recover. Look for the month-to-month trends.

[Lisa V]

What is AGC? The counts we usually look at are Hgb, WBC, Plt and ANC (neutrophils).

I agree with the others that there is no reason to panic at this point. Your daughter's progress sounds very good to me. All counts typically go up and down, and often stall out for a while before starting to rise again. As long as the general direction over time is more up than down, the little fluctuations along the way don't mean much. A platelet drop of only 1k is statistically insignificant.

The margin of error in testing is greater than you might think too. We once had Ken's Hgb retested because 7.6 seemed unbelievably low (even though he was relapsing at the time). The second test, just an hour later, came back 8.2. Go figure. Still low, but I had been charting his counts for over a year and by that time I knew what was within his typical pattern (even in relapse) and what wasn't. I suggest you do the same. I suspect that once you become familiar with the normal ups and downs you will be able to relax more.

[HumanRubble]

Thanks, everyone, for the input. I had become used to the platelet count increasing with every test, and increasing by an average of about 8,000 each week. I had a hard time when it slowed down to only 1 or 2 thousand increase each week, and a decrease knocks me for a loop. It is comforting to hear that these plateaus are not unusual, and don't signal failure.

On the up side, my daughter doesn't seem at all discouraged, and I try very hard to remain positive in her presence. Another unpleasant thing about this whole thing, for me, is that I have to pretend to be okay all the time, and I'm not. All my life I've been told how strong I was, but now I'm just tired.

[Ryan Jay]

Everyone's AA is a little different. For example, I know someone whose platelets bobbled back and forth between 70 and 90 for 6 years, and now all of the sudden, they've trended up over 100. He's lived a perfectly normal (even athletic) lifestyle during that time.

My platelets surged up to the mid 40s in October and then drifted down to the high 30s for about two weeks, then they started charging up again and are now almost over 90.

This disease is not a Blitzkrieg, where you have radical surgery and then cross your fingers and hope for the best.

It is siege warfare. You may have to sit outside the gates of the city for months, even years before you break through. Being stubborn and tenacious are virtues in the world of AA. On a personal note, I do possess these charateristics. Throughout my life, they have made me insufferable to my family and work colleagues at times. But in the context of Aplastic Anemia, they are the tools that get me through the whole process.

But you also need to give yourself permission to be "weak" sometimes too. When I was in really rough shape this summer, I used to give myself "puzzle time." I'd go to a private room (cry a bit) and work on a challenging puzzle. After about a half hour, I was worried more about that darned purple edge piece that I couldn't find rather than my ANCs. Just a suggestion.

Good luck!

[Lisa V]

Originally Posted by HumanRubble

Another unpleasant thing about this whole thing, for me, is that I have to pretend to be okay all the time, and I'm not. All my life I've been told how strong I was, but now I'm just tired.

I think every caregiver here knows exactly what you mean.

Basically, we all just do the best we can, and hold it together because we have no choice. It does get easier with time, but the first thing you have to let go of is the notion that things will magically go back to the way they were. They won't. Hopefully your daughter will continue to respond well to treatment and go on to lead a full, happy life, but AA is something you'll always have in the back of your mind. The more you can learn about it and come to terms with it, the less helpless you'll feel. You're not alone, you've just joined a new community of people who have to deal with this sort of thing. If you can find one or two people here whose experiences seem close to your own, and connect with them, it will make things a lot easier.

[edithr]

Hi Human Rubble. I don't have much to add except that I too have a 15 year old (son) was JUST diagnosed with severe AA. Found out today his sister was not a match, we go Monday to talk about the ATG/Cyclesporine tx. I am not good with numbers, yet.

Just wanted to let you know I will be following in your footsteps here soon, if you have any advice I'd be glad to hear from you. My prayers are with you and your daughter.