One of today's most difficult moments... so far... because you know it's only 1:45 pm... is seeing the families and children return to say "Hi" and all the staff cheering and welcoming them.
It's hard because I want to be them.
I want to be through with this shit. I want my daughter to be healthy and well. I want her to be dressed up and feeling her best. I want her to have color in her cheeks and to not be wearing a mask.
I want to be the mom who does not have bags under her eyes and is wearing the same bra for four days.
Anyway, maybe I'm being selfish.
We just found out that Abigail will get another new medication to suppress her period because if she were to have her cycle it would be dangerous. Her platelets are back down to 15. Her ANC is 170. She has no immune system.
We went for a walk on the unit today and I heard a man coughing and hacking. I literally wanted to commit murder right then and there. I wanted to punch him in the throat and kick him in the balls. And I wanted to scoop Abigail up and run with her in my arms back to her room and slam the door.
Instead I glared at him, and escorted her to her room where I squirted hand sanitizer all over both of us.
Thursday, July 28, 2016
Days 1, 2, 3
While Abigail was at her dad's house for her week with him she began having uncontrollable leg pain and low back pain. She could not sleep because the pain was so bad. It was not responding to anything she tried: ibuprofen, tylenol, warm baths, ice, etc. By Sunday Chris and I decided to take her to the ED.
Sunday night was the longest night of our lives. The initial blood work showed pancytopenia with extremely low platelets (19,000) and the most concerning finding of more than 20% blasts. We were pretty much immediately sent to UW Madison Children's Hospital (American Family and Children's Hospital or AFCH). Six hours after admission to AFCH and 12 hours after our ED visit to SwedishAmerican we were told that she has leukemia and the only question now is which type. By 11 am we knew it was B-Cell Acute Lymphocytic Leukemia (B-Cell ALL). Abigail's platelets dropped even lower to 14,000 and she received a transfusion. On Monday afternoon she was scheduled for a spinal tap, bone marrow biopsy, and PICC line insertion. But needed her platelets to be at least 50.
Her bone marrow sample was "dry" meaning it was difficult to obtain enough marrow, the leukemic cells make it more sticky and she was stuck twice in different spots.
Her spinal tap was contaminated with peripheral blood, so we do not know for sure if the cells seen were truly in her CSF, or just a contaminant. Her doctor tells us that regardless if the CSF is + or -, all patients get Intrathecal Chemo, and that they will retest her CSF next week.
Monday she also had some MRIs.
Tuesday July 25, 2016 was considered "Day 1" and she got her first chemo treatments. Her leg and hip pains are improving but on Wednesday she started having more thoracic pain. The thoracic pain is also accompanied by a headache. While all the specialists have been running a battery of tests and imaging, her other mom and I both feel this might be muscular in nature. We asked her dad to bring her pillow from her bed.
Last night, Wednesday night, was pretty bad for pain. She has had to have morphine boluses. It was my first night alone in the hospital with her and I've been scared for her.
This morning, Thursday July 28, 2016 ... Day 3 ... and we have a new plan for today. I am quickly learning the the "plan" changes everyday, and sometimes twice a day. The plan for Day 3:
1. Switching from IV antibiotics to PO (yay!).
2. Switching from IV morphine to PO extended release (yay! but we are keeping the PCA as well for breakthrough).
3. Starting BID lorazepam for muscle spasms.
4. PT/OT this morning.
5. NP teaching this afternoon.
6. The worse update to our plan... Abigail will not be going home on Friday as originally planned. We will be staying over the weekend.
How is Abigail doing?
She is scared, overwhelmed, anxious. She is getting crabby and snapping at me. Then she apologizes. The prednisone has started to increase her appetite and the mood swings are starting. She is tearful at times but very giggly after. She misses her friends but is overwhelmed at the idea of entertaining them. She has certain staff here, doctors, who's only job is to talk to her about her emotions. And she is talking.
How is Mom/Dad doing?
We feel the same. Except for the appetite part. We feel helpless and scared.
This morning I woke up staring at a balloon in my face that said "Get Well Soon" and I instantly felt pissed off. Fuck you balloon. There is no get well and there is no soon.
Sunday night was the longest night of our lives. The initial blood work showed pancytopenia with extremely low platelets (19,000) and the most concerning finding of more than 20% blasts. We were pretty much immediately sent to UW Madison Children's Hospital (American Family and Children's Hospital or AFCH). Six hours after admission to AFCH and 12 hours after our ED visit to SwedishAmerican we were told that she has leukemia and the only question now is which type. By 11 am we knew it was B-Cell Acute Lymphocytic Leukemia (B-Cell ALL). Abigail's platelets dropped even lower to 14,000 and she received a transfusion. On Monday afternoon she was scheduled for a spinal tap, bone marrow biopsy, and PICC line insertion. But needed her platelets to be at least 50.
Her bone marrow sample was "dry" meaning it was difficult to obtain enough marrow, the leukemic cells make it more sticky and she was stuck twice in different spots.
Her spinal tap was contaminated with peripheral blood, so we do not know for sure if the cells seen were truly in her CSF, or just a contaminant. Her doctor tells us that regardless if the CSF is + or -, all patients get Intrathecal Chemo, and that they will retest her CSF next week.
Monday she also had some MRIs.
Tuesday July 25, 2016 was considered "Day 1" and she got her first chemo treatments. Her leg and hip pains are improving but on Wednesday she started having more thoracic pain. The thoracic pain is also accompanied by a headache. While all the specialists have been running a battery of tests and imaging, her other mom and I both feel this might be muscular in nature. We asked her dad to bring her pillow from her bed.
Last night, Wednesday night, was pretty bad for pain. She has had to have morphine boluses. It was my first night alone in the hospital with her and I've been scared for her.
This morning, Thursday July 28, 2016 ... Day 3 ... and we have a new plan for today. I am quickly learning the the "plan" changes everyday, and sometimes twice a day. The plan for Day 3:
1. Switching from IV antibiotics to PO (yay!).
2. Switching from IV morphine to PO extended release (yay! but we are keeping the PCA as well for breakthrough).
3. Starting BID lorazepam for muscle spasms.
4. PT/OT this morning.
5. NP teaching this afternoon.
6. The worse update to our plan... Abigail will not be going home on Friday as originally planned. We will be staying over the weekend.
How is Abigail doing?
She is scared, overwhelmed, anxious. She is getting crabby and snapping at me. Then she apologizes. The prednisone has started to increase her appetite and the mood swings are starting. She is tearful at times but very giggly after. She misses her friends but is overwhelmed at the idea of entertaining them. She has certain staff here, doctors, who's only job is to talk to her about her emotions. And she is talking.
How is Mom/Dad doing?
We feel the same. Except for the appetite part. We feel helpless and scared.
This morning I woke up staring at a balloon in my face that said "Get Well Soon" and I instantly felt pissed off. Fuck you balloon. There is no get well and there is no soon.
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