Abigail still was not feeling well. Karen took her for yet another visit to PMA in Limerick. Dr. Segal said there was nothing wrong with her. I don’t have any actual pictures to show you, but Abigail didn’t even look well. Her nose was running profusely, and it wasn’t always clear (like a sinus infection, or something more than allergies or teeth). We thought it was only teeth coming in when she’d hold the right side of her head and ear, and the doctor said there was no problem. Both of her cheeks were all chewed up from her wiping her nose up her cheeks (I know, it’s disgusting, but that’s what she was doing, and her nose was running faster than we could keep it wiped, and the wiping had become a habit for her). Her eyes looked heavy. She was having trouble breathing (not gasping, just breathing hard through her mouth).

Well, once again, there is “nothing wrong” according to the doctor.

This should have been posted on the 23^rd, but since we were still at CHOP, and not in a room yet, it was difficult to make that happen, so I posted on the 24^th…

After I got home from work, Karen pulled up in the van, all three kids in tow. She dropped off Victoria and James, and asked if I thought she should take Abigail to West Chester to have “real” doctors look at her. I told her that she knew better than I whether she should take Abigail. Off she went. That was at about 1615.

Some time during the evening, Karen called to say that Abigail was on IV fluids because she was dehydrated. (Note, the doctor said this afternoon that she wasn’t dehydrated because she still had tears when she cried.) That wasn’t good news. That meant they wouldn’t be coming home early. So, I started working on things, getting ready for the morning rush.

Then I got a call from Karen at around 2330. This is not a call I wanted to get, but I didn’t know it at the time. Karen was absolutely hysterical on the other end of the phone. I knew it wasn’t good news.

Abigail was diagnosed with Leukemia.

I couldn’t speak. I couldn’t think. My heart completely sunk. What happened to taking Abigail to the hospital for some fluids (we thought she might be dehydrated despite what the doctor said) and maybe some IV antibiotics - something stronger and more effective than the oral stuff we’ve been feeding Abigail for the last month and a half for single and double ear infections (one so bad that the doctor cringed when she saw it - doesn’t that tell you something?)? All of a sudden my our whole world changed.

What was going to happen to my sweet little girl? Would she survive? Would we lose her? Will this devastate our family? What is leukemia? Why her? Why us? What did I do? Or Karen? Why us God? What’s going to happen to my job? Insurance covers this, right? Or are we going to lose everything? All those thoughts ran through my head before my heart beat again. (Just for the record, I would gladly lose everything to have her healthy again; it was just a thought that went through my head having seen some of the shows on TV. And the thought to God wasn’t an angry one, just wondering why we were chosen for this ‘mission.’)

Karen said she and Abigail were being transported by ambulance to CHOP, her mom was heading back to the house to pick me up, and that Aunt Bobbie was on her way over. I hung up the phone. I must have been in shock because I wanted to cry, but I couldn’t; there were no tears, only confusion and disbelief. Wendy came with Aunt Bobbie to watch poor Victoria and James while I headed to Philly with GaGa. I went over the morning routine with Aunt Bobbie, and tried to get the math homework ready for Wendy to show Victoria.

I sent a note to work saying that I wouldn’t be in on Tuesday and the reason for the absence (Tuesday was my big release day - the project I worked on for the last month was elevating to the Web site, and I wasn’t going to be there to complete it). I hoped it wouldn’t be an issue, and I was sure it wouldn’t, but it is something I worry about. So that covered work.

It was late, and I wasn’t sure if MomMom would be up at midnight, and I knew she couldn’t really hear the phone over her machine, so I sent an email asking for as much prayer as she could give, knowing full well that that email would reach thousands of people within minutes of her reading it. I felt really bad about not calling, but that’s how I handled it.

GaGa arrived. Victoria must have heard us talking downstairs because when we were ready to leave, I saw her head poking around the corner at the top of the stairs. She asked what was happening, and I told her that Abigail was really sick and that GaGa and I were going to go see her and mommy. She was tired, and finally went back to bed after a number of hugs. GaGa and I packed some things, and headed out toward Philly…

I have to tell you, this turned into one long day. Joyce (GaGa) and I arrived at CHOP some time after 0215. We parked in the parking garage, and hiked to the building. It seemed like a very long walk.

We asked one of the hospital people (identified as such - by us - because of his scrubs and proximity to the building) how to get into the CHOP ER, and it was just up ahead to the right of the steam vent.

Checking at the desk, we found that Karen and Abigail were in room four in the ER.

Abigail looked even worse than when I had last seen her, and so much worse that that bubbly little girl I saw at MomMom’s on Sunday, even with the ripped up cheeks. My heart sunk again. She was sleeping or resting on Karen, who was laying on the gurney in the room. Every once in a while, Abigail would wake up and scream, sometimes long screams, sometimes only once, and then rest/pass out again. She was in just a diaper, had tubes in both arms, cuffs around the tubes and arms to keep from ripping them out (also keeping her from bending to wipe her nose - an unplanned benefit I’m sure), heart and breating leads on her back, a wrap-around connection on her big toe (probably for heart, too), and who can remember what else. It looked like the Borg was taking her over.

Honestly, I had trouble looking at her. My little baby, who 10 hours ago was sitting in her car seat trying to smile and wave to me, now hooked to three or four different machines. That’s hard to take. Karen had to get up, so I took her for a while. She was burning up, so hot to the touch. (Another note, PMA, her doctor, said she was fine and didn’t have a fever. An hour later in West Chester, she was at 103°F. Nothing wrong there, right?) I’m hoping that it’s just because I’m a ‘hot’ person too, but Abigail didn’t want to stay with me for too long. She wanted GaGa, and she called for her.

So it went in room four. We passed Abigail around, trying to make her happy and comfortable.

We’d been told back at about 0230 that the oncologist was called, and that we’d be hearing from him soon. Well, it was after 0400 that he finally entered room four.

He seems to be a nice guy, and a knowledgeable doctor (from our 30-60 minutes with him), but he talks slowly. He is young, and has a son one month older than Abigail. Yeah, he tried to familiarize with us to put us at ease. That upset Karen, who would rather just hear what she needs to hear. I got a lot of good information from him, and he explained a lot of things, but still, I had trouble staying with him because he was so slow and was trying to really “dumb it down” so we could understand. I don’t know what Joyce thought of him, but he’s okay in my book. He said it may be confusing in the oncology area - there is one Dr. Fish (him), and two Dr. Fishers. Yeah, that could (will?) be interesting…

Dr. Fish told us about what was happening inside Abigail’s bones, in the marrow. How the bad white cells were not maturing and moving out into the body like they were supposed to, but instead were reproducing and not maturing and pushing the red-cell and plasma producers out of the marrow. He went over a bunch of information, and it helped me (at least) understand what is happening. Not why it’s happening, just what is happening.

The whole time we were in room four, nurses were in and out checking Abigail, adding fluids, taking blood, more fluids, more blood, checking temperature (Abigail really hates having her temperature taken under her arm - sounds like she’s being stabbed, but that could have been her fever - up and down between 101°F and 103°F). Oh, and we had to walk around the corner for X-rays.

Finally, we signed some papers allowing the hospital to do what they needed to do to Abigail, some other things, and a consent to allow Abigail’s extra harvested bone marrow to be sent to some main office to help find a cure for this disease.

Then, a short time later, word came that we were headed up to a room…

Okay, so it is 0630, and we finally get moved from room four to 3South, room 3401. That’s Abigail’s Room. She will be there for the entire first round of treatment, which could last four to six weeks, depending on what the doctors find from the tests later today.

As soon as I find the real address, I’ll post it…