Author: Adria

Today was the first day of DI, or Delayed Intensification. Like the name suggests this is usually the most intense phase for most kids with leukemia. Serenity had her blood drawn this morning and we held our breath until the results were back, hoping that her counts were good enough that she could start this phase. I was fairly sure they would be ok but when they told us I was secretly so proud of my girl. 4 days early and her counts were higher than the nurse seemed to think they would be. She had a lumbar puncture scheduled (when they inject methotrexate chemotherapy into her spinal column) and had this morning. The procedure went fine but it was a little scary (for me) because the anesthesiologist said she had had a laryngeal spasm, and he had had to massage her throat in order for her to start breathing well again. It’s uncommon and not a big deal and not likely to happen again, but very scary for me to think about.

After she recovered from the anesthesia we went back upstairs to oncology where they gave her IV Vincristine and the new chemo, doxorubicin. This one is a harsh one (ha ha, as if some chemotherapies were a walk in the park) so she is expected to be nauseated, lose her hair again, and have low immunity. So far though she is feeling pretty good. She played all evening with the 4 little ones and seemed to be her normal self. She was a little emotional today, but not too bad. We started her back on steroids again tonight. I’m really not looking forward to dealing with that again, but at least she is one week on and one week off, rather than taking them continuously.

We go back on Tuesday for a shot of PEG, yet another form of chemotherapy. She’s only had the shot once before but I think it was really, really painful.

Today was our appointment for Serenity’s echocardiogram. When the oncology clinic scheduled the appointment they told us she might or might not need to be sedated, so we had her fast in case. We got to cardiology and after the nurse checked her over the anesthesiologist came in to talk to us about sedation. He said it was not uncommon for parents to try and do it unsedated, so the plan was to do that and if she refused to hold still they would pause and sedate her. I was ambivalent because I figured we would end up sedating her anyway and thought the least traumatic thing would be to just do it in the beginning.

But as it turned out, she held perfectly still and did NOT need to be sedated at all. I was so proud of her. The room was dark and we turned her Wiggles DVD on so she watched the TV for most of the procedure. I held one hand and Phil held the other and we were very close to her. I whispered in her ear from time to time and she did just fine. I was truly amazed at how still she was for close to an hour. Because she hadn’t been put to sleep we were able to leave right after the test without having to wait around in recovery. It really was the right way to do it, and I was grateful that Phil had felt strongly that we should try it that way.

There was a bit of confusion at the oncology clinic. We were scheduled accidentally for an appointment, and so the charge nurse wanted to draw labs. Since Serenity had not been accessed for the echo I really didn’t want to go through the rigamarole when I knew we didn’t need the labs done. It didn’t take long to get it cleared up and we were able to leave without getting her blood drawn.

Next week we will go back up and she will start Delayed Intensification. I am a little bit worried about that phase. It is supposed to be similar to Induction, fairly intense, and now that we are back in our groove and people aren’t clamoring to help I worry how we will get through the sleepless nights and temper tantrums. Hopefully we will do it without too much difficulty, and once we are out of this phase it’s on to Long Term Maintenance!

Serenity’s appointment last week went well. She had lost a bit of weight, but not as much as I’d thought (0.4 lbs). Her ANC was 0.9 and they like it to be 1.0 so she did not get her last dose of IV methotrexate. She still got IV Vincristine, but didn’t need any platelets or whole blood so it was a fairly quick appointment. We were one of the only people in clinic so she got her choice of toys and we were seen quickly. It made me wish we could always come on Fridays!

This week she gets a break from chemo but we do go up on Thursday for an echocardiogram. The new chemotherapy that she will be getting in the next phase can cause heart damage so they like to have a baseline so that they can monitor for any changes. She will probably have to be sedated for the test so we are going up really early on Thursday. We will have to leave around 5:30 – 6:00 a.m. to be there by 7:00.

Other than that all is well.

I spent some time this morning reading all my old posts about Serenity’s leukemia. It made me a little sad. I miss the sweet happy child she used to be. I miss her cute long thick hair. But I was reminded how far we have come since those first days. It’s just like I’d been told; life goes on and leukemia just becomes a part of it.

I realized that I haven’t blogged for awhile and I feel a little guilty. There is a lot to say, but I haven’t had much free time.

This past weekend we went to a family camp put on by Candlelighters. It was just amazing. We spent the night in a cabin near Snow College and spent the entire time interacting with other families touched by childhood cancer. We played family bingo, hiked, did crafts, made a family flag, competed in family olympics, ate good food and watched movies. It was everything I had hoped for. It was so nice for the other kids to be around new friends and everyone had fun and didn’t think about cancer, all the while being with people who know exactly what it is like to think about cancer all the time. Most of the other children were cured and off treatment and it was a wonderful thing to see them. In fact with a few of the families I wasn’t sure which child was the “cancer kid”. We came home with extra food, beautiful quilts for each child, matching T-shirts, and knitted caps. It was really, really neat.

I have been trying for a few days to get a good picture of Serenity that depicts how sick she looks to me. She has done surprisingly well since our last clinic visit, considering how much chemo she is getting. But she looks so very sick to me. I had her in the grocery store the other day and the checker said to me, “She either just woke up or she is getting sick.” I just smiled; it is easier sometimes not to explain.

She feels so thin to me. I am anxious to get her weighed at the clinic on Friday because I’ll be shocked if she hasn’t lost weight. She isn’t eating very much, but she is making up for it by nursing. She is nursing almost around the clock. I am so tired, and I feel like I’m not giving the twins enough of my attention.

Serenity’s hair is growing back in and she reminds me of a fuzzy little bird. She touches her head a lot and tells me, “My hair!” as if she is proud to have it. I expect it will fall out during this next phase of treatment, which is supposed to be the most intense. I am a bit concerned that she will be upset by it.

We have our visit on Friday at the clinic and if all goes well, she won’t go back until the end of September.