Category: Serenity

Tuesday we went to PCMC for Serenity’s PEG shots. What should have been a 30-60 minute appointment took over 3 hours while we waited for the medication to be sent up. She had a shot in each leg. She screamed; those shots really hurt. Her tummy got red and blotchy so they thought she might have been reacting but it went away after about 30 minutes, so it could have been a fluke. She had lost a little bit of weight and I think her activity has decreased just a bit. Talysa went with us & got to see the clinic, which was nice for both her and Serenity.

Thursday Serenity and I went back up for her chemo. She had another dose of doxorubicin and vincristine, which didn’t bother her a whole lot the previous week. She immediately got really, really nauseated, which I had not expected. They give her an anti-emetic at the clinic but even with that she was so ill. We hung out at the clinic for awhile and then made the drive home. She held her little throw up basin the whole time but didn’t throw up. After the first day she seemed to be doing better. She has a couple of mouth sores on the inside of her lips but she doesn’t seem to mind a whole lot. She is eating less, but still eating without complaint. And thank goodness she is still nursing regularly.

Taran woke up in the early hours Sunday morning screaming about stomach pain. I gave him Tylenol and he fell back asleep. He seemed fine for a few hours then started crying again. His pain came and went all day Sunday. Most of the time he would laugh and play just like normal but at times he would cry from the pain of his stomach hurting. Monday was the same thing but he was starting to double over when the pain came or writhe around on the ground. Phil came home from work so that I could take Taran in to the pediatrician.

She examined him and he didn’t have any of the classic symptoms of appendicitis – no fever, no real tenderness over the appendix. He had been pooping regularly but she thought it was likely that he was feeling a little backed up and that was causing the pain. She said it was possible that it was intussusception. She referred us to the pediatric radiologist at a nearby hospital for an abdominal ultrasound.

I headed over there and while we waited to be seen it seemed like his pain was getting worse and a little more frequent. The radiology technician performed the ultrasound and didn’t say anything about what he saw. He said that the radiologist wanted to take a look as well and went to get him. The radiologist spent quite a while doing an ultrasound examination, the whole while pointing things out to the technician. I listened with half an ear to what they were saying, but while I recognized the terms from my college anatomy class I couldn’t tell whether their findings were normal. Mostly I concentrated on Taran whose pain was coming in waves, and was very very uncomfortable. Finally I heard the radiologist say that the appendix did not compress and that instead of 4 it measured a 6 or 7, so it would have to come out. I thought I must have misunderstood and asked him to repeat what he said. Appendicitis was not what we had expected to hear.

The radiologist called our pediatrician, who called the surgeon, who told us to go to the ER and wait for an OR to open up. The radiology tech walked us over to the ER and I asked him, feeling a little silly, if he was sure that it was appendicitis because I still wondered. He assured me that they were certain.

We waited in the ER for awhile and I congratulated myself for having the forethought to bring EMLA and put it on Taran’s arm in order to numb it before the blood draw. When the nurse came in to do the IV Taran became nearly hysterical and the nurse assured him that it would not hurt. I figured he probably knew how to do it quick and painless and besides, I had used the EMLA. Taran did feel it, and it really hurt. He was hollering and moving and the nurse was able to get enough blood for labs but there was a lot of moving the needle around and trying to keep it in the vein. Then the vein blew (collapsed?) and they had to put the IV in Taran’s hand. The poor guy was screaming and begging them to stop and another nurse and I were holding him still. It was awful. But the IV went into his hand pretty quickly and he calmed down a bit.

About the time Phil joined us the surgeon came in and examined Taran. He also expressed surprise that he didn’t exhibit the classic symptoms of appendicitis and said that he had talked with the radiologist who was confident that it was an obstructed appendix with appendicitis. He explained the margin of error in diagnosis with physical exam alone, with ultrasound, and with a CAT scan but that at Taran’s age a CAT scan wasn’t going to be really accurate. He said there was the possibility that he would get in there and find out it was not the appendix but that he recommended taking it out based on his level of pain and the ultrasound report. We agreed, and soon Taran was getting anesthesia and being wheeled off to the OR.

Eventually the surgeon came out, told us the surgery had gone well, but that it had not been his appendix. He said it had been intussusception after all, and while surgery was not the normal treatment he had straightened the intestines out and it appeared things would be ok. Taran was sleepy and in a lot of pain. I kissed him goodnight and went home to be with the other kids while Phil spent the night with Taran.

In the morning Phil reported that Taran had thrown up and slept restlessly and was running a fever. A few hours later we talked with someone from the pediatrician’s office who had spoken to the surgeon. The surgeon had gone over the ultrasound pictures with the radiologist this morning and agreed that the appendix did indeed appear abnormal, and the conclusion was that Taran was probably suffering from both intussusception AND appendicitis.

Taran has been sleeping for most of the day. We have had him up and walking around a few times, which is so sad to see, because he walks like a little old man, crying the whole time and clutching his stomach and / or leg. He is obviously still in a lot of pain, but it is only when he moves and he seems to be feeling better than before the surgery. His fever has come down and he is drinking a little bit and staying hydrated, thanks to the IV fluids. He refuses to eat and we’ve been giving him Zofran because he is very nauseated. It looks like he might go home tomorrow, although the nurses say they would like him to be eating.

Today was crazy; our family had a million appointments and there was a lot of driving back and forth and switching cars and children. We were fortunate that Phil’s mom was able to come be with the kids at our house so that one of us could stay here with Taran at all times. Tomorrow should be easier and then Thursday we are back to the clinic with Serenity for more chemo.

Who said life was boring?

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!