Thanks for visiting my site! If you're new here, you may want to subscribe to my RSS feed. Also, please sign my guestbook, my parents read all the guestbook entries and comments to me and I love to hear from everyone! If you or your child have Leukemia too, leave us a link to your blog - we love reading other Cancer Fighters stories! Thanks again for coming by! Love, Serenity

We came home on Wednesday. Things are going well. There have been a few minor fevers and she threw up all over the car today. We have her on IV fluids at night. I just wish I could figure out why she is so sick, and help her to get better.

It is nice to be home.

Serenity has been tagged by Mollie. Here are 7 things that you might not know about her.

1. My parents always intended to name me Zion. When my mom went into labor and she & my dad still disagreed about whether to spell it with an X or a Z, they started looking at other names. If I’d been born on July 4th I would have been named Liberty. Instead I was born on July 6th and they chose Serenity Margaret. Margaret was my great grandmother’s name and my grandmother’s middle name. I’ve lived up to the name Serenity.

2. I was born at home in the water, and weighed 9 lbs 11 oz.

3. I have 4 older sisters and 3 older brothers. My 3 yr old brother and sister (twins) refer to me as Baby.

4. My parents give me a few sips of Pepsi or Mountain Dew after I take my medicine. My mom feels a little guilty, but it’s the only thing that convinced me to cooperate with taking my medicine, and what’s a little caffeinated soda when you take chemotherapy every day?

5. My favorite candy is peanut butter M&Ms.

6. I have a cute little birthmark on my elbow.

7. I often put a blanket over my head and tell everyone I’m gone. I get a big kick out of watching them look for me. I also love to pretend that I’m a bear.

I’m tagging anyone who is reading this, but especially Brinley.

Will Hopkins, 6 years old, passed away last night after an arduous battle with Acute Lymphocytic Leukemia. I read the news last night with a heavy heart. Will’s website is:

http://www.caringbridge.org/visit/willhopkins

Kiki was diagnosed with Acute Lymphocytic Leukemia in January 2004. He relapsed in January 2005, and again in December 2007. Today I heard the news that he has been put on hospice care. Kiki’s website is:

http://www.caringbridge.org/ca/kiki/

We were discharged from the hospital yesterday because Serenity had gone approximately 36 hours without a fever.

Yesterday afternoon she had a fever of 102. I called the hospital and they said to give her Tylenol and call back in the morning if the fevers persisted.

Late last night she started throwing up & had a fever of 104. She couldn’t keep any Tylenol down and when we called the hospital the oncologist on call told us to come back and be readmitted.

Last night was rather traumatic. Among other things, they ran a small tube up her nose and down the back of her throat and suctioned out some secretions to run tests on. At 3 in the morning she finally calmed down and had stopped throwing up enough to keep some Tylenol down.

So here we are. I haven’t yet got the results of the new tests they’ve been running. We never did know exactly what caused her fevers before but the consensus was probably a virus that held on a really really long time. Hopefully the doctors can figure it out, and I can take my little girl home again.

In the meantime she is back on antibiotics and anti-nausea medication, along with extra potassium because her potassium did come back low.

Serenity is doing much better than before. Monday she only had a fever once, at 4:00 a.m. So far today she hasn’t had one since 12:30 a.m.

Sunday she had a CT scan. It was pretty traumatic. She wasn’t sedated & I didn’t think she would be so afraid of the machine. She was hysterical and screaming. Phil & I were both there, holding her hands, rubbing her forehead, reading a book to her, talking & singing to her. She would calm down and then a movement or noise would set her off again. I felt really bad.

There had been some question as to whether or not she ought to be sedated for it, so finally I asked could we just sedate her. It had been 6 hours since she had had anything to eat or drink except the contrast for the test. I had refused to nurse her during that time just in case she did need to be sedated, since the nurse had mentioned it. I was pretty upset when I asked that she be sedated and the technician informed me that there is no anesthesiologist available on the weekends, so we would have to schedule it for the following day. After she had gone hungry all morning and worked so hard to drink all the contrast they wanted her to have! I was pretty sure she wouldn’t agree to drinking it again the following day.

Eventually we did get her settled down enough that they were able to do the scan. All in all it probably only took us a half hour but it seemed like forever, and I felt awful knowing how terrified she was. For one thing the machine made a big noise while it was running. It wouldn’t have bothered an adult but here she is afraid of the sound of the pressurized air, afraid of the sound of trucks driving by outside, afraid of sounds she hears outside the room when the nurses are moving stuff around. To be lying on a narrow elevated table and then hear the noise from the machine surrounding her was terrifying to her.

Serenity has had two platelet transfusions since we’ve been here, so her platelets are currently in the 50s. Her hematocrit is still quite low. Overall her numbers have been dropping slowly. They are not as low as they were when we came in, but there is definitely a downward trend. She is still getting the Neupogen shots every night - horrible, because she begs not to have to get them - and her ANC has come up from 0 to 700 and is holding. I asked the doctor about it because she’s had the shots 6 times now and yet her ANC isn’t going up any further. (It did move to 900 one day, but then dropped back down to 700 the following day.) The doctor said the fact that it is holding at ANC rather than dropping along with her platelets and hematocrit mean that the Neupogen is doing something. A good thing I guess, but I really wish we could stop giving her the shots. I meant to ask the doctor about Neulasta, but forgot.

Serenity has become very temperamental these past few days. I think she is just fed up with being here and being stuck in this room. We’ve only been able to leave the room one day during the 9 days we’ve been here.

Today she threw up and it got all over her port dressing, which then had to be changed. Getting the dressing removed is probably the thing Serenity hates most. She really really really does not like it. I was just sick to my stomach that she had to have it changed all over again. She had it changed this past Thursday and it will have to be changed again this coming Thursday.

Other than that I think we are close to coming home. We will probably come home on IV fluids, the Neupogen shot, and antibiotics.

Well, nothing much has changed. We are still at Primary Children’s. Serenity’s fevers seem (to me) to be a little less frequent, but they are still high. Last night’s was 105. The doctor did do a urine culture, along with blood cultures and stool tests and everything is negative. They are testing for C diff again (this is the 3rd time in the last 2 weeks) because her poop is still so liquid. I don’t like when we are waiting for C diff results. She can’t leave the room & all the staff puts on protective gowns every time they enter. When I go to the ice machine I feel like everyone is looking at me, wondering if I washed my hands. I’m sure it’s all in my head, but it was such a relief when her test came back negative and we could go back to being normal patients.

Serenity’s regular oncologist is the attending doctor over the weekend, so I am hoping to get more information from him as to what they are thinking. I’ve heard various things from other cancer parents. The fevers could be a side effect of the ARA-C, which we finished 6 days ago. They could be from some sort of infection that hasn’t shown up yet. Although it’s uncommon for it to take this long, it’s not unheard of. It could be a fungal infection that hasn’t manifested yet. It’s possible, but unlikely, that it’s related to her port. The nurses often refer to her as the mystery patient, because she looks & acts so good when her fever is down. But she is so very sick when the Tylenol wears off.

She has been complaining a lot about her eyes since we’ve been here. I spoke with the resident, and I hope that an opthalmologist will be able to take a look at her.

It is hard being away from the rest of the family for so long. I miss the kids and I know they miss me. It seems like there was hardly a break between Taran’s 2 weeks in the hospital and now this. But I am grateful that I have neighbors and family helping out with my other children & with meals so that I can be here with my girl. And I love the fact that I can snuggle her all day and all night long.

She has had the Neupogen shot for 3 days now. It is bringing her ANC & white blood count up, which is what we’d hoped. Her hematocrit and platelets continue to drop. My poor girl hates the shots and I hate having to hold her during them. It will be hard to continue to give them to her at home.

On a happier note, here are some photographs from our stay here.

One of Serenity’s favorite things to do at the hospital is get extra “stickers” with her name on them and put them all over her clothes.

Being a little bit bashful about me photographing her artwork.

The artwork in question. (I helped with the socks ;))

Our pediatrician & her office manager (also a very good friend) sent up a goodie bag filled with snacks and activities. Serenity had a blast with her Play Doh.

Serenity seemed to be feeling much better today. She didn’t throw up at all & she asked several times to get out of bed. Her ANC is still at 200 and her platelets had dropped to 7, so she received 2 transfusions today (1 blood and 1 platelets). I was relieved that the doctor finally wanted to transfuse her. She’s got some petechiae again and bruising on her legs *from where the diaper rubs against them*. It was too much like when she was diagnosed, and I was trying not to freak out.

The doctor also decided that now that she’s not taking chemo she should start getting Neupogen shots daily. (Phil & I will have to administer them.) These will help to raise her ANC gradually, with the goal of leaving the hospital once it is high enough for her to ward off infection.

Today her temp climbed to 104.2 which also freaked me out but it did come down again once she got the Tylenol (which they will not give rectally due to risk of infection). So we’re making progress I think.

Her temp has climbed to 103.6 today. She’s only vomited a handful of times but hasn’t eaten a thing. I’m changing poopy diapers 3 and 4 times an hour. Her ANC was 200 today and dropping. Serenity is a very sick little girl.

Today was rougher than yesterday for Serenity. We’d originally hoped she might go home today, but she has had a fever for most of the day even with the Tylenol. She has also thrown up several times; up until now she has complained of nausea regularly but not actually thrown up. It is the saddest thing to see. She isn’t eating so it’s just bile and medicine. It’s hard when she is feverish and I want her to have the Tylenol (because it sometimes works), but I’m afraid to give her anything for fear she will throw up.

I haven’t been out of the ward for 48 hours. I was able to sneak in a shower for which I was grateful. When she falls asleep tonight I will slip down to the cafeteria for something to eat. Today’s food has consisted of a bagel and cinnamon bears.

I’m a little bit worried that she isn’t eating (because of the ordeal with Taran, who had to have a PICC line put in and be put on TPN) but she is still nursing so maybe we are ok. She nursed quite a bit yesterday and this morning. This afternoon and evening just a bit because she was feeling so nauseated. We are still awaiting the C diff results but her diarrhea is back in full force & she cries when I change her diaper (which is frequently).

She is done with her Ara-C, which might be the cause of the fevers, and she only has 1 day left of her thioguanine, and then 2 weeks without chemo or steroids, if I’m remembering correctly.

Well it looks like we will be here for a few days. Serenity’s fever came back last night (103 degrees) and Tylenol isn’t having much of an impact on it. She alternates between feeling energetic and cheerful and being lethargic and cross. She spent a long time crying last night because she wants to go home, or at the very least leave the room.

She can’t leave because they are waiting for results to come back on her C diff test. I believe she was tested a week and a half ago and it came back negative, so I don’t expect that she has it but until the results are back we are quarantined & the doctors and nurses put on masks and gowns to come in and check on her. We’re in the Immune Compromised ward so the room is already cleaned & dusted carefully once a day but because of the possibility of Clostridium difficile our room is also wiped down with bleach at the beginning of every shift change.

She only has 3 days left of chemo in this phase of Delayed Intensification but according to the doctors her ANC will likely plummet more & so she needs to be here until she’s gone about 48 hours without a fever.

After spending 2 weeks in the hospital with Taran (a story for another time), we are back in the hospital with Serenity.

On Thursday Serenity’s ANC & hematocrit were low at our clinic appointment, & she received a transfusion. Yesterday morning she was fine but by night time she had a fever of 101.8 & the doctor on call told us to bring her in to be admitted. By the time we got settled in she was covered in little red bumps & complaining that her mouth hurt.

They drew blood for labs and started cultures on her blood & urine last night, and also started her on Zosin, an antibiotic. This morning she woke up feeling much better & her rash is receding. It is still quite prominent in her diaper area which concerns me, but hopefully we will soon know what caused it.

If she is dealing with a virus rather than a bacterial infection, and continues to make progress we could go home as early as tomorrow.

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!

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.