Category: Uncategorized

Today was another clinic visit. I expected the place to be packed but it was almost empty. That’s always nice. We were assigned to Room 3, which Serenity thought was very cool. 3 is her favorite number (because she is 3 years old).

Serenity got to talk to the Child Life Specialist for a few minutes. Serenity has asked to see her during the past few visits, but when things are crazy busy she’s not always easy to track down. This time she helped Serenity to pick out a toy. Phil & I laughed at the Care Bears toy that she played with. It was like a miniature doll house with all these different parts. Serenity picked up the big dinosaur-age computer and asked, “What’s this?” I don’t think she believed us that it was a computer because it was as big as the Care Bears and the chairs they sat on.

The appointment went quickly. Serenity has been especially bashful lately, so she kept her face hidden from the doctor and nurses most of the time. We managed to snap a few quick photos though!

Here she is getting her port cleaned, so that it can be accessed.

And getting her Vincristine (chemo).

She got to pick out a hat from the hat tree in the clinic.

I stopped by the pharmacy to pick up some Prevacid after her visit. It’s been a few months since we bought any, and I don’t know if our insurance was the same. The co-pay was $41! I was in shock. We’ve never had to pay more than $10 for anything. I only had $10 with me, so I left the medicine there. If she needs it we can have it transferred closer to home and pick it up in a few days.

Phil was laid off several weeks ago and we have no money coming in right now. He’s started applying for out of state jobs since so far nothing has come through locally. It will be a blessing if something comes through, but moving is complicated for the obvious reasons, but also because of Serenity’s treatment. If he is able to get a good paying job outside the state, it will mean him moving and most like I will stay here with the kids until she finishes treatment next year. We are praying that it doesn’t come to that. 🙁

Serenity seems to be feeling good, so we got a shock when the clinic called with her lab results. Her ANC is down to ZERO! I don’t know if it’s ever been that low. We always keep her out of public places when her ANC is low (less than 1000) but we are both very nervous that she’ll be exposed to something over the holidays. The good news – if you can call it that – is that she doesn’t get her oral chemo when her ANC is low. We’ve been holding her oral chemo for most of Oct and Nov now, so I do hope that her marrow responds soon and we see those numbers come back up.

Happy Thanksgiving!

Oct 1 – Serenity had a routine clinic visit for her intravenous vincristine. When we got the results of her blood draw, her ANC was quite low – only 400. (Anything under 500 is considered neutropenic.) We were told to hold her chemo (oral chemo, not the dose she’s just received) for 2 weeks and then her blood would be re-drawn and her ANC hopefully high enough to resume chemo. So although I was a bit worried that her counts were low, I thought it would be a nice break for her system from the chemo.

Oct 7 – Home Health nurse comes to take Serenity’s vital signs. No blood draw but everything else is good.

Oct 8 – Serenity wakes looking sick, with a fever, but it quickly disappears on its own and she is back to normal.

Oct 9 – Serenity wakes looking sick. Her fever of 101 degrees lasts for 2 hours, then I call the clinic. (I am supposed to call at one hour but things were crazy getting the other kids out the door for school, so it didn’t happen.) The oncology nurse wants me to take her to the nearest ER saying kids with a fever can get really sick, really fast. We compromise by me agreeing to phone the clinic when I get to American Fork after dropping the twins off with my mother in law. Her fever is 100 degrees by that time and she looks fine, but the clinic wants me to bring her in. Her ANC is only 100, and after some IV antibiotics and some discussion she is admitted to the Immune Compromised ward.

Oct 10 – Her ANC is up to 200.

Oct 11 – Her ANC is back down to 100, but no fever for 24 hours and she looks great. She is bouncing on the bed and asking to go home. We are discharged, which I had mixed feelings about. I was ready to be home, but several kids at home have sore throats and I am worried about her low ANC.

Oct 12 – Home Health is back again, to do a blood draw. Her vitals are good and she is feeling alright, although she is particularly cross today and throw several MAJOR tantrums, which is unlike her. Her ANC is back up to 400, but the clinic wants to see her tomorrow for another blood draw.