It’s weird how my brain has been working, but I got Averi up early so I could give her a bath because I didn’t know when she’d be able to have another tub bath if she was at the hospital. (She didn’t get a bath last night because my parents paid for our family to go out for dinner and enjoy what might be our last “normal” time together for a while.)
I showed up at the appointment this morning with butterflies in my stomach and cold sweats. After I answered all the questions, the doctor started talking to me about the different kinds of blood cells, blah, blah, blah…when are we doing the biopsy and when do we get the results?
They finally gave me the option to just continue monitoring her blood every couple of days or doing the biopsy. I need concrete answers, I want the biopsy. They then delved deeper into her medical history and told me that they couldn’t do the procedure without approval from cardiology (because she’s had open heart surgery) and from ENT (because of her laryngeal cleft repair and tracheomalacia).
All I understood was that she wasn’t being admitted to the hospital, they weren’t doing the biopsy today, and they obviously didn’t think this was as serious as I did. My daughter might have leukemia and you want me to go home and sit while you make calls and schedules?
They wanted to test her blood levels again so we went and sat in the waiting room. We waited for 45 minutes before I finally got up and asked someone why it was taking so long (my nerves were fried so everything felt like it was taking forever). He said he had her file and didn’t know we were waiting. Great!
I was really worried about them taking her blood again since her platelets are low (making her bleed and bruise a lot) and she’s such a hard stick. Luckily it was just a finger prick. Then we had to wait another hour for the results. We went for a walk.
When the doctor returned with the results, it was both good and bad. Her platelets are still really low, the blasts (immature blood cells) have gone down from 10% to 6%, and there are still some other abnormal cells. They still want to do a biopsy, she doesn’t need to be admitted right now, she will need a platelet transfusion the day before the biopsy is done, and they will call me sometime tonight with the details.
She also explained that, other than leukemia, there are some other possible outcomes. Transient myeloproliferative disorder (TMD), a condition common in babies with DS, results from rapid growth of abnormal white cells. It can go away on its own, although it needs to be followed closely since it can also be a precursor to leukemia. I’m not sure if this is very comforting right now, but I’ll take it.
The doctor did get in contact with cardiology and ENT while we were waiting and ENT said they want to scope her throat to make sure it has healed correctly before the biopsy is done. I went home with no hope that it would be scheduled any time soon and wondering how I was going to calm myself for the next week or two while our lives hang in the balance.
I received a call at 2:30 with wonderful news. Averi is scheduled for the platelet transfusion on Monday morning (the soonest it could be done since we have the weekend in the way) and the biopsy will be Tuesday morning. ENT is going to meet us in the OR to scope her throat and then stay to make sure that there are no complications during the procedure.
The results take at least a day so the soonest we will know what our future holds is Wednesday. Not my perfect scenario, but the best I could ask for given the circumstances.
I am truly amazed at the love and support that we have received from so many of you. We are greatly blessed to have such wonderful friends and family. Thank you for your prayers and please continue to send them our way. :)