Haley’s Giggle

White Blood Cell: 4.5

ANC: 3

Platelets: 71

I am not being lazy; her counts stayed exactly the same. That is all good in that she has not needed a transfusion– platelet or whole blood– for a week.

The big challenges of the day were to get the studio ready for Haley’s arrival tomorrow, and to get Haley to take all of her medications by mouth. It was the first time I was in the studio. This will be Haley’s new home for the next several weeks, until we make the trip back home. My hope is that we get discharged early enough today for Anna and Haley see each other.  Anna has not been allowed to see Haley while in the hospital. So it’s been two months since these sisters have seen each other.  I have prepped Anna for it. She already knows that before we touch Haley we have to wash our hands and purell. Let’s see if she actually does it.

We spent a good part of the day packing up the room. Favorite night nurse stopped by to see Haley, and I almost lost it. It is a very unnerving and isolating feeling to be leaving Haley’s room. Nurses and doctors alike have all told me at one point or another how great it is walk into Haley’s room, to Haley’s world, even for just a few minutes. She’s that bright of a person, even at 10 months old.

Tomorrow. I am not looking forward to tomorrow. It’s too emotional. While I know this is a needed step forward in the process, it is possibly the most terrifying one so far. No one to help. No one to catch something wrong with her before it gets bad. No 24 hour nurses, no controlled environment, no doctor to say she’s right on target, even if she’s spent a night vomiting.

Guests today were: Savta (who, after two weeks of being such a wonderful support here in the hospital– we will miss you very much), Grammy and Gramps, and Favorite night nurse.

Funny moment of the day was seeing how smart Haley is when it comes to her medicine. She now refuses to cry with her mouth open, lest someone stick something bad in there.

White Blood Cell: 4.5

ANC: 3

Platelets: 71

Number of times Dragon Fly fell on the floor and had to be washed: 3

While those white blood cells are agonizingly slow out the gate, I set my focus on watching Haley’s platelets for the first time go up without a new transfusion. This is why we are here. This is why Haley had to go through what she did and why she has still a long road to go. but I couldn’t believe it: from a count of 65 (65= 65,000) to 71 (71,000).  All by herself. It really took me a minute to digest the number. 71. It’s not even that high of a count. In fact, most people have counts somewhere between 200-400 (200,000-400,000). I don’t hold my breath for tomorrow’s count, because she just got an infusion of IVIg (antibodies) that may slow down the destruction of platelets.  But today was a glorious day.  The rest of her counts are nothing to sneeze about (Speaking of sneezing, she did it three times, which had some of the young doctors a bit worried. But she doesn’t seem to have any other symptoms).

Today I was given the list of all the medications she still needs to be taking, all by mouth. They are:

1) Tacrolimus, three times a day (9 a.m., 5 p.m. and 1 a.m.)

2) Anti-viral, also 3 times a day, same time as the Tacro

3) Folic Acid once a day

4) Multi-vitamin once a day (with the Folic Acid)

5) Prevacid (crushed and put into a cherry syrup)

6) A probiotic to help rebuild her stomach with “good” bacteria

7) some other stuff i can’t recall at this late hour

 Today is the first day that I administered the Tacro. I tell you, I’m much better at changing her dressing (remember those days?) than forcing her to take medicine. Goodness, that’s just one of the medicines.

Tonight, Ranan and Joey are starting the first round of cleaning the studio apartment where Haley and one of us will be staying until we return to DC. Tomorrow, if we can’t find someone to clean it, I will go and finish the job.

The prospect of leaving the hospital is still too daunting to actually absorb either intellectually or emotionally. So I will not focus on the fact that tomorrow’s our last full day that has at times taken away her fight, but never her spirit.

 Guests today were: Savta and favorite nurse #2, who heard we were leaving and wanted to stop by and not say goodbye.

Funny moment was the nurse on duty listing to me all of the oral drugs Haley has to take.

White Blood Cell: 4.7

ANC: 3.2

For all of you have been paying as close attention to the numbers as I have, you will notice this is first time that her white blood cell and anc counts have gone up without the boost from the bone marrow bossting stuff (GCSF). Her platelets went down, but not by too much. This gives me a great sigh of relief to see these numbers. Had we been discharged before her counts went up independent of any stimulant, I would have been struggling.

I wish her night reflected her happy counts. Unfortunately, she was up all night screaming. Literally screaming. Finally, at about 5 a.m., they gave her some pain medication that seemed to have wiped her out… for 3 hours. That’s it. At about 8 a.m. we were both up (she by choice, me by close proximity to the crib). The doctors didn’t have an answer, and big picture Attending was just pleased that her white blood cell counts went up by themselves, that all he was interested in was seeing her drink a bit more before he discharged her.

People have been asking if I’m scared. I will tell you. I’m not scared. I’m completely petrified. Yes, her counts have gone up. That means the bone marrow transplant “took,” or at least seems to be engrafting.  Unfortunately, she still has no immune system, and we will be without the gloves, gowns, and masks, and even though the hospital poses its own health risks (such as staff infection), there is not a single microbe in that room. Now, keeping Haley’s world sanitary enough to ward away any infection is a daunting task. Anna will want to hold her, touch her, kiss her. And it will be near impossible to stop her. Anna is well-trained in the purell method and washing her hands when they get dirty (now she specifically dirties her hands just so she can wash them). But she is with other children all day.

Just to make things clear (because it seems I haven’t yet explained this part), we will be staying in the New York area, as we will need to be near the hospital for outpatient visits, and god-forbid the occasion where we may need to be readmitted. She still needs platelet and red blood cell transfusions, and may need another bump or two of GCSF. On top of that, they need to monitor her Tacrolimus levels, as well as general blood levels of things other than cells.

We are preparing the other place (a studio apartment near Aunti Lori and Uncle Lenny, owned by my parents’ close friends, Arnie and Sandy). We will be cleaning it like the hospital room, and making sure we will be able to haul everything out of the room (including the lazyboy looking rocking chair from home). There are a dozen errands to run, and not enough hands to do them.

I was talking again today with discharge nurse (she has got to have the hardest job in the world. Telling parents they will be leaving the security and support of the hospital in the midst of the most dangerous time in their child’s life. I used to say I would never want to be a toll booth operator. I now say I would never want to be a discharge nurse). She said that Haley is not allowed to touch dirt. Dirt. I would never have though not to let Haley touch dirt. I mean, it’s “dirty” in the natural sense. But I never would have thought about the mold, the fungal things, etc., that live there.

Guests today was: Savta. 

Funny moment of the day was so funny, but out of respect for Savta, I won’t say it. You’ll have to ask her yourself. So the other funny moment was that since Bush was in New York, there was incredible traffic. This was New York, so there were 5 policemen for every pedestrian walking. Some of the cops were eyeing a man in sweatpants walking his two dogs through the police barrier.