Haley’s Giggle

White Blood Cell: 3.8

ANC: 2.4

The Attending came in today and said that they are looking to discharge Haley by the end of the week. Her counts haven’t stabilized, but from their perspective, the counts are going down at a slower rate than before, therefore she must be starting to produce her own cells. I wasn’t upset today when I heard that news. But the dicussion with the discharge nurse was really difficult. The message is, only after a year will Haley be in the clear. Until then, at for the first 6 months, everything poses a risk to Haley. They gave me a list of places I cannot take her for the first YEAR. They include public places with large crowds: grocery stores, public pools, etc. She said that if we ran out of diapers and there was absolutely no one else that could pick them up, then someone could take Haley into a store to pick it up. She will also not be allowed many foods. Forbidden foods include: strawberries, blueberries, raspberries, blackberries, peaches, plums, nectarines, carrots and tomatoes. She’s also not allowed any fast food. Luckily, this kid doesn’t even have teeth yet, so it won’t be a problem for a while. And luckily, Anna hates all fruits and vegetables, so at least Haley won’t feel left out if she sees Anna eating something. 

 Haley was her sparkly self today. Full of giggles and fight. It was a pleasure to hear her cry for food. It was a pleasure to hear her cry for me. Normal baby behavior. I’ll take that any day. 

 Tonight we said goodbye to favorite nurse. I tried to fight back tears, but they came too quickly. Favorite nurse has been there from the beginning, and as been her main nurse. It takes a lot for nurses to get attached to their patients, and I appreciate Favorite nurse doing so knwoing full well we would be leaving. But I hope to keep in touch with her, if for no other reason than for Haley to know the person who treated her on a minute by minute basis, who nursed her and nurtured her (and all of us, really). And while many people were enthralled with our little charmer, Favorite nurse and Haley had a very special friendship. We will miss favorite nurse, but hopefully, we’ll get together outside the hospital for a girls’ day out.

Guests today were: Savta and Aunt Tova.

Funny moment of the day (really for the past few days) is the realization that my daugthter does not make a move without Dragon Fly, the little stuffed dragon fly toy that I ripped off her stroller mobile. She’s been hanging onto that dragon fly ever since she could. Now, it is her security blanket. You can imagine then what kind of hell it is when we have to wash it.

White Blood Cell: 4.3

ANC: 2.7

It is Earth Day, and so, to honor it, we cleaned Haley’s room with disposable alchohol wipes, used disposal diapers and mattress pads, and changed our plastic gloves and paper masks and gowns at least a dozen times. When she gets out of this thing alive, I’ll plant a small forest. I promise. For now, I’m thinking about buying stock in the medical supplies company that provides the hospital with these materials.

Attending who started it all (the one with the very special bond with Haley) was on call this weekend. He tried his hardest to get her to flap her arms and giggle as she does. He even got down on one knee and proposed. But she was not amused today. I don’t blame her after the bouts of vomiting from last night and this morning. I’m not sure why she’s still vomiting, though the Attending said that it was still due to the chemo. 

I’ve started to remove my mask (no gasping, I’m allowed, provided I don’t lick or spit in her general direction, and I make sure she doesn’t have her hands near my mouth) and make “lala” and “mama” sounds (no hard consonant sounds, less I pop my sound and out goes some spit in her general direction). She’s enamored with the mouth. And why shouldn’t she be? She hasn’t seen one (besides Oprah’s) for almost 2 months now. She’s even started to say “la.”

It was a tough day today, mostly and almost exclusively because I heard a terrible story in the kitchen area (which is why I never talk to other parents). Their child was let out a week ago, only to contract a major viral infection that will now be with him for life (Epstein Barr). So, while I can say that for what she’s been through, and even if she hadn’t been through it, Haley looks great most of the time, it’s a petrifying time. Because her counts may be coming in, but she’ll have no immune system for at least two more months, and even then it will be severely limited in power. That parent said after telling me his story, “I never get excited about any positive news anymore. I know too well how things can quickly move.” I think today I started to understand what he was saying.

Guests today were: Savta, and Louise (who came for a surprise visit).

Funny moment of the day was the Lori Berkner Earth Day concert that Alex and Anna went to (along with Ranan, Carly, and Uncle Pretty). Alex was on the ice cream line most of the time, and Anna was petrified of the crowds. Of course, when I got back to Auntie Lori’s, they both told me what a great time they had dancing with Lori B.

White Blood Cell: 4

ANC: 2.9

I feel slow. I feel like all of the research and learning I have done about CAMT over the past 5+ months, about her counts, what to watch for, etc. has been for naught. These counts to me say that she has yet to stabilize counts. Yet the doctors say she’s doing fine and the only reason she’s still in the hospital really is her eating. I just can’t believe that. I would like to see two days straight where the counts don’t go down. They don’t even have to improve. Just stay the same. And I’ll see that she’s able to make and maintain her cells all on her own. Right not, I guess I’m not understanding.

Haley had a great day. She even ate a bit more from the bottle (though she spit up again today). Though of course nothing by way of food will get passed her lips. They took her off the nutritional supplement fluids and just put her on electrolytes. She is also taking all of her Tacro by mouth, and is no longer on a morphine-type drip. She was a bit tired in the morning, but took a nap and was her smiley giggly self today.

Guests today were: Uncle Pretty and Carly, and Joey.

I took Anna to the park today and we were on the swings next to a baby swinging. It was a stunning blue-sky day, and I was looking at the baby nexy to us, realizing that Haley hasn’t had a breath of fresh air in 6 weeks.

Funny moment was when we were looking for Alex and Anna, Anna was playing with the football while Alex was trying on the ballerina skirt. Soon they’ll go back to their regular routines, but for this blip in time, they are able to get out of their own lives for a bit and experience something new.