Chemo working a little too good, she's neutropenic again

The increased dosage of chemo has finally shown itself in Emily's labs. Her ANC was around 350, which is pretty low, defintely moderate neupenia. To remind some of you, that means she doesn't have enough neutrophils in her white blood cell count to fight common colds and viruses effectively. It means we have to really consider her exposure to the public, weighing risks and benefits. School may be worth the risk, but the Sharks game we had tickets to tomorrow night is a definite no no. Malls and movie theaters are strongly discouraged as well. This is data we all can consider during flu season. So this week her chemo is reduced to zero, nothing for the whole week. Next week we will start building up to full dose again. I did the math and by the time she is back on full dose, she will only have two weeks of therapy left.

Some of you may be wondering, "is it a concern that Emily is having these issues so late in therapy, is this a bad sign?" The quick answer is no, in fact it's completely possible that on her last week, she could be neutropenic, and that therapy would be considered a complete success, neutropenia is just a side effect of strong chemotherapy.

In immuno-suppresion you seem to be doing a "dance" with the combination of drugs, viruses, the disease, and the environment. With a child who really doesn't understand how viruses are passed, and who has to go to school, this is just part of the road to recovery. They have done the studies and it's much more beneficial in the long run for Emily to be in society, rather than locked in a sterile hospital. (In the 1970's you literally dropped your child off at diagnosis and hopfully picked them up when they were "done" current oncologists at Packard remember this, that's how recently treatment was done that way.)

Emily's Doctor, Dr. Link received a special honor this week. Dr. Link was voted to be President and lead the American Society of Clinical Oncologists. He was voted in by his peers, the organization consists of 27,000 clinical oncologists. He also has the honor of being the first pediatric oncologist to ever be named President of the society. We are really excited for him and the whole program he leads at Packard, this really shows how great they are. He will continue to see his current patients so there is no worry there.

Labs are in and increased chemo seems spot on

Emily just finished her first week of increased chemo dosage. The reason her dose was increased was because she's grown and gained weight so the dosage is adjusted for that. However it was the first increase she has had since she started maintenance back in November of 2008. So the new %100 chemo has been adjusted going forward.

She had to take Zofran a few times this week because she woke up feeling nauseous. My guess is after a few weeks she won't need that anymore, but we will see. She also complained of leg pain, which was probably due to an increase in the IV Vinchritine last week. To remind you, Vinchristine causes neuropathy and if you watch Emily run you can see the longer term side effects of the drug. It should slowly resolve over the years after treatment. Some children get it much worse and have to do physical therapy at the end of treatment.

The results of her labs justified the increased dosage all her levels were great and her ANC was around 2600 which is good. I mentally track her ANC and for the week following steroids high 2000's are normal and the levels typically work their way lower over the month until the steroids jack them up again.

Emily is back to school this week, and she seems happy about it. I think she missed her friends and teachers over the holiday and was excited to see everyone again.

Emily will remain on %100 dosage for the week ahead.

Last IV Chemo of 2009, bring on 2010, we've been waiting for you.

Yesterday was Emily's monthly IV chemo and exam. She gets them every 4 weeks, so technically this is the second one we have had in December, it's just the way the calendar worked out.

Emily's exam went well. Nothing really notable, except she has had this persistent rash for a while and what Dr. Link called "Chemo skin". He gave her a referral to Dermatology and said the order would be expedited so Emily can start treating the rash in the correct way. Since she is on her Prednisone this week, when she woke up this morning the rash was gone, so maybe we won't need the referral? I know at the end of treatment she will temporarily have a lot of skin issues, it's just what happens when you come off her type of Chemo.

Emily has grown, both taller and because of her medication also gained some weight. As a result we have to again increase her dosage. Both her 6MP and Prednisone doses were increased. Unfortunately the Prednisone increase is just enough to bring back the depression she experienced during earlier higher dose phases of chemo. You can really tell this week that she is having a hard time. Last night after chemo she was supposed to have a sleep over at Grandma's house, which is usually a huge reward. She called us at about 7:30 crying and wanting us to come pick her up and bring her home. We did. she even slept in our bed with us, she just wants to be with her parents. I am also worried that with the increased dose of 6MP she may start to experience the nasuea symptoms that you hear about with people on chemo. We have been told she doesn't throw up all the time because her dose is relatively small, but increasing it could change things. I hope I am just worrying too much. And at least we only have 71 days to go.

Hapy New Year ! 2009, was MUCH better than 2008, but we've been looking to March 12th 2010 for about 2 years now, and have high hopes for this coming decade.

Thank you to my blog readers and facebook readers, your support is much larger than you will ever know.

Labs were great, and we are set for Christmas.

I can't believe it is already Christmas Eve, 2009. It was a year ago that Emily started growing her hair back and we had settled into maintenance chemo. This past year has somewhat cruised by with its share of challenges along the way.

Emily's labs yesterday were great, her ANC was around 2900 which is pretty high but still in the acceptable band. I'm a little surprised because Haley and I have a cold, and I would think Emily will be getting it soon. Though next week is Prednisone and IV treatment, so her ANC will be high again no matter what due to the drugs. Emily will remain on %100 chemo for the week. Next week her IV treatment will be a day earlier than normal because of the holidays, the scheduling at the clinic is a bit off.

We are pretty much set for Christmas. This year not much decorating happened, we were so busy and time flew. We do have a nice tree and have the stockings up, and the girls don't seem to mind that some of the other decorations never made it out of the box this year. Both Emily and Haley are getting some nice presents, and tomorrow we are also going to tell them about the Disney Cruise we are going to go on in the Bahamas at the end of treatment. Including next week's IV treatment, there are 4 left, which means just 17 weeks to go, or around 75 days!

Back to full power

Emily's ANC was up in the 2000's for today's lab session, that means she is finally back on %100 chemotherapy dosage ! This is what we expected and its always wonderful to hear positive news. With winter break coming up maybe we can keep her virus free for a few weeks? Though she is going to the Sharks game with me tomorrow night and there is sure to be some exposure there.

Tonight Emily, Tracy and Haley went on a horse drawn carriage ride through our neighborhood to see the holiday lights. Our neighborhood has been doing this for the past couple of years. They had a really good time and Santa was there handing out cookies so of course that was a hit. Both Emily and Haley are excited about Christmas. Next week they will be going to the Nutcracker up in the San Francisco, and then I am joining them and we will go out to dinner and Christmas shop, and stay over night in Union Square. We will be spending Christmas Eve at my Mom's. Then on Christmas Day we are are having my Mom and brother over here to our house. Tracy has to work Christmas day starting at 3pm. On the day after Christmas we are all driving up to Auburn to spend a day at Tracy's parents home. It's going to be a big party up in Auburn, Carol and Steve have 7 grand children and they will all be there! I'm sure the other kids are excited about it, because both Emily and Haley are really looking forward to seeing and playing with their cousins.

Going strong

Emily is back to herself, the flu is gone, and she is getting excited about Christmas. Today her class walked to a retirement home nearby the school and did a few songs from her performance. Emily seemed to really enjoy doing the show and really liked being with the older folks. I am sure the seniors enjoyed it too. Today was also Emily's lab day. It was the first time in quite a while we didn't have to be isolated because of H1N1, and Emily was allowed to wait in the normal waiting room and have her blood drawn by the Oncology team, who know how to draw Em's blood really well. We got the results in a couple hours and her ANC was around 2200, which was great. Per her protocol she will remain at %75 dosage. If she maintains that ANC level she will return to %100 chemo next week. It's so hard to stay clear of viruses at this time of year for kids, but she's trying.

Holiday Performance

I will add a higher quality one tomorrow. This was the final song in the performance. The rest of the performance was filled with holiday songs. Also, one of Emily's third grade classmates and our neighbor Alex Zhau played the violin for us, last month he had performed at Carnegie Hall, he was amazing.

Monthly Chemo and H1N1 update

Today was Emily's monthly IV treatment in the day hospital and an exam in the oncology clinic. Since she is known to have H1N1 when we get to the hospital we have to check in and then wait outside for a nurse to come clear her for entry and then escort her to an isolation room. The same protocol is followed for weekly lab draws. We had to wait about an hour and a half for some reason in the exam room. We pass the time with Iphones, laptops, and a lot of good humor and sometimes not so good humor. Sometimes when we wait Emily becomes "Dr. Emily" and pretends to give us exams. It's fun to play, but you also learn a lot of how Emily views her care and her disease. We almost never complain to the staff about having to wait, we know that they are probably busy with kids who are much more sick than Emily, and we remember those days all too well.

Dr Link, or NP Karolina, and a student NP all gave Emily an exam. Dr. Link has to really exam her lymph nodes in her throat area and it hurts Emily, he does it so hard that today he left red marks that remained for an hour or so. Her exam itself went great, there were no concerns and we again we assured her CT looked great. Then it was time to discuss H1N1. They told Emily that they were going to swab her to see if she still has the virus. Then they told us something that we were not expecting. Apparently Emily has a mutated form of H1N1, that Stanford Infectious Disease (ID) has only seen in Emily and one other patient. Since there are laws to protect that other patients privacy I don't know anything else other than just Emily and patient X have had this. They jokingly said that Emily was "famous in the ID dept." Dr. Link then ordered a chest x-ray. He said he wasn't too worried because Emily is not symptomatic but also wants to get her virus free. So to sum it up, the last time she was tested she tested positive, which we all knew about, but we didn't realize that it was a mutated form. The other patient that had this was ultimately cured with a higher dose of Tamiflu, so we expect that if Emily is still virus positive she will be put on an increased dose of Tamiflu, and we just hope she remains symptom free. She is NOT especially contagious, so don't worry. She does not have a fever, a cough, or really any symptoms of the virus and she is clear to be at school. They treat her with extra care in the Oncology area because there are kids there with absolutely zero ability to fight anything, the kids waiting for bone marrow transplants for example. Overall we aren't terribly concerned about this, but at the same time it's a bit unsettling to think she has a form of the virus they have only seen once before. We should get the results of the swab in the morning.

After the exam we had the x-ray in radiology. She moved during one of them so we had a re-do. Then from radiology she was escorted to the day hospital on one north for her IV treatment. She turned on "Sponge Bob the Movie" and tuned out. I don't think she even realized the IV needle went in. She was watching the movie, and because we were so delayed the Sinera patch had her hand completely numb. The IV insertion and lab draws went very great, and then she got her IV medication and were done. All in all we were at the hospital for 5 hours today.

This evening Karolina called us with her cbc results. The important part was her anc was 3200 so she can increase her chemo done up to %75. Her chest x-ray was clear too.

Labs and CT results

Today was Emily's lab day. I was able to take her this week and give Tracy a break. Since Emily is still H1N1 positive she has to be isolated from the other 1 North patients. There are kids in the waiting room who are waiting for bone marrow transplants, with resperators on that really can't risk Emily being near them. We had her labs drawn and she did a great job. Then they told me that Dr. Link wanted to see Emily. At first I was a bit alarmed because Dr. Link doesn't usually see people on their lab days and even more rare to see him without an appointment. Then I remembered that we had a CT scan Monday and he must have the results. Again this was the first time we've had CT scan where I was much less worried than I have ever been about the results. I remember the first few CT scans were so hard on me because we had to wait days for the results, and the results are so important, they are THE true diagnostic that the treatment is working or that it isn't. But this time I think I actually worried hard for about the 2 minutes I was sitting there waiting for Dr. Link to come in the room. He walked in all masked up and said to Emily, "Your CT looked GREAT! What's for dinner tomorrow night?" And they started to talk about Thanksgiving.

They told me they need to swab her next week for H1N1 again to see if it's gone, but until then she remains on Tamiflu. One of the side effects of Tamiflu are bad dreams, and or hallucinations, Emily's has been reporting some bad dreams lately. We don't know what she is dreaming about because she tells us it's too scary to talk about. Sometimes the dreams are about her and sometimes about Haley. We are keeping an eye on her well being but she really seems great otherwise.

Tomorrow we will be having a very early Thanksgiving Lunch at my Mom's house, Tracy has to work the evening shift so we are getting the meal in early so she gets to be there.

Happy Thanksgiving to Everyone. Have a wonderful day with your families and loved ones.

Emily still has H1N1

We got call on Saturday from the ER doctor at Stanford to inform us that Emily's swab for H1N1 was positive. We were surprised that was the reason for Friday's fever. Actually we aren't sure it is the reason for her fever, she could still be fighting H1N1 and have a second virus. Since she is on active therapy the protocol calls for her to go back on Tamiflu while she is positive for H1N1.

Today we are at the hospital again, for a scheduled CT scan. This is to check to make sure she is still in remission.

Another trip to the ER

Today Emily spiked a fever of 101.6. We were surprised since it seemed like the other night she had beaten the current virus. Since she was Neutropenic on Wednesday with an ANC of 630, we had to take her to the ER right away. They were ready for her when she arrived, they did urine cultures, started an IV and drew blood. Her urine was really cloudy so we were worried it could be an infection. They also swabbed her for H1N1, but since she just had it, they were swabbing to prove it was gone, they don't think she has it again. In the hospital her fever was 101.2. I've noticed our thermometer is always a little higher than the reads at the hosptial, I think %100 of the times we've gone, maybe it's time for a more accurate one? Anyway it was still high enough to justify being in the ER, anything above 100.3 for Emily is a serious fever.

It took a while to get results, but the results were good. Her ANC has bounced back to 1800. Also her urine was clean. The Dr. told us she was surprised about the urine too, she was also worried when we gave her the sample....though she didn't tell us that at the time. So, Emily was given discharge papers and will be home in time for dinner.

I don't know if this is a good thing or not. This time I wasnt worried about Emily, I knew she was going to be OK, I was just mad that my Friday afternoon was gone. I feel like I am getting too used to this.

We averted a hospital trip last night

Yesterday I updated everyone that Emily's ANC had fallen to Neutropenic levels and that she probably had a new virus. At 11pm when Tracy went in to give Emily her Chemo she noticed she was warm. We took her temp and she was 99.5. That is technically not a fever, you have to hit 100.3 to be considered to have an official fever. But we know Emily very well and we know that her temp usually runs around 97.7, so to us when we have seen fevers in the 99 range it has meant she was on her way up to above 100.3 levels. So we were pretty sure that within an hour or two we would be heading to the ER for blood and urine cultures, and since she was neutropenic it would also mean she would be hospitalized.

To my amazement an hour later, she was cool again. I think she fought off a virus and avoided the hospital for the first time in treatment. This means she is strong. This one isn't H1N1 since it was resistant to the Tamiflu she was on up to yesterday, it's most likely Rhinovirus aka the common cold.

I called the Oncology Fellow last night at 11 to warn him we would probably be seeing him later in the night. In that call he told me there was a study done recently that kids age 1-5 have a active virus in them 150 days out of the year. This really explains why all parents get sick when their children go to preschool. But I was surprised that is was 150 days a year .....Wow.

Emily's blood counts greatly reduced, so we reduce chemo

I was surprised last week when her ANC was in the 2000's and she had H1N1. Well this week it caught up to her, and her ANC was only 630, meaning she is neutropenic. To remind my readers what Neutropenic means, at a high level. All of us healthy people have White blood cells that fight virus and infection. Emily's chemotherapy suppresses her immune system. Each week she needs to have labs and what they are looking at among other things is her Neutrofil count. Our Neutrophil count describes how many of these T-cells we have to fight virus and disease. If you have a number lower than 1000, you dont' have enough neutrophils to fight an infection or virus, and thus you are classified as Neutropenic. If you aren't on immunosuppresion and you showed up with a number lower than 1000, it would be a very bad sign. I believe HIV patients battle neutropenia as well.

So Emily is neutropenic this week,and most likely with a reduction in 6MP and Methotrexate her levels will return to "normal" or normal for Chemo. however if she gets a fever and is neutropenic it means she has to be hospitalized in an isolation room. We will probably keep her home since it's flu season.

Update about the blog

Hi Blog readers. Over the past couple of days we have had some activity on the blog that I need to shut down. Somehow ad for Cialis and Viagra are being put into comment fields on the blog.

As a result I am going to start to moderate comments. What this means is if you enter a comment on Emily's blog, Tracy and I will get an email asking if we approve the comment. If we do it will be posted, if not it will be obfuscated.

While these comments are being put in really old posts and probably only Tracy and I are aware of them, I want to keep Emily's blog as "pure" as possible, because one of the reasons I am writing it, is so I can give it to her so when she wants to as an older person, she can go back and read about all she went through.

Thanks for understanding. Onward and upwards !

BTW All 4 of us have H1N1 now. Emily with her Tamiflu and vaccination was definitely the least effected so far, so if you can get one, I would really recommend getting yourself protected.

116 days of treatment left.

H1N1 and lab update

Despite having H1N1, Emily's counts are totally where they should be this week, so she will remain on %100 Chemo. I am surprised to be honest, but the clinic said that with H1N1 they aren't seeing counts reduce. I read that H1N1 kills because it produces a wild response in your immune system called a Cytokine Storm, which backs what the clinic told us. At any rate despite this flu, Emily continues to do really well.

She isn't all the better from the flu but she is up, dressed and walking around doing normal "Emily stuff". It seems she is going to get over this with little trouble. The clinic does want her on Tamiflu for 10 days, which is twice the normal duration for the drug.

We plan to send her back to school tomorrow.

Celebrating 1 year on Maintenance

We just realized that this week marks one year that Emily has been on maintenance chemotherapy. We can't believe it's been a year since we ended intensive chemo, and that we have been in this maintenance mode for a whole year. Maintenance mode means giving Emily a pill at 11pm every single night, waking her up, getting her to wake enough to swallow pills, and then putting her back to bed. We just keep doing this until March 10th 2010, and then we stop. There is no taper, no change, you just stop taking pills one day.

I remember Dr. Davis telling us on the day they told us Emily's official diagnosis....."Here is your protocol, you can see that every single day from now (March 2008) until March 2010 is planned out. One thing is for sure, there will be challenges along the way, we don't know what they will be, but there will be challenges, but it will work, hang in there. You may not believe this but we want to save Emily just as bad as you do."

Emily will have labs this week and next week as usual. On 11/23 she is going to be having a scheduled CT scan to take a look and make sure everything is OK. Those are hard because there is a lot of anxiety on the results. Hopefully we will have the results on wednesday the 25th before Thanksgiving.

Update on Emily's H1N1

Early this afternoon we got a call from the ED at Stanford saying they had just heard back from the County virology unit that Emily's test for Influenza A came back positive. H1N1 is Influenza A and the county says that %99.9 of influenza A is H1N1 virus, so Emily is a positive for it. They had already started Tamiflu treatment in the ER, so all we were supposed to do was to continue with the treatment.

I went to Target to get Tamiflu to find that they didn't have any of it. Not only did they not have it, but Emily requires the liquid version. She can swallow pills fine, it's a dosage issue I expect that she needs the liquid. I asked Target to call Walgreen's which they did, and luckily the county had just dropped off doses of liquid Tamiflu there. Since they were from the county Walgreens could not charge me for the medication, so thanks to Santa Clara county not only did we get the medication, it was also on the tax payer.

Emily is doing REALLY well. Her only fever was the original one that brought us into the hospital. That fever broke around 6am this morning. She is conjested but not too much worse than a bad cold. I would say her energy level is a little low. But really this is very mild and at this point I am not too worried about it. Since her ANC was 2400 she is continueing on %100 chemo, even though she has H1N1.

I will have an update tomorrow.

H1N1

Last night Emily started to get a fever around 11pm. Earlier in the day we could hear a new virus starting. It's really discouraging when you fight to keep her away from virus, and then she still gets one. Her fever went from 100.9, then up to 101.5. Anything over 101.2 and we need to go right to the ER to have her ANC checked. Emily spent the night in the ER while they ran tests, blood, urine, nose swab for H1N1. She has all the signs of H1N1 flu and the doctors said we will need to wait for conclusive results, but more than likely she has H1N1. The GREAT news is her ANC is 2400 so she was not neutropenic so she gets to fight this flu at home, rather than having to be in an isolation room at the hospital. She was also given Tamiflu because they are that certain this is probably H1N1 virus. She threw up her first dose so we need to give her another one later this morning.

It was amazing how calm and or numb Tracy and I are to all this. Last night when Tracy first discovered the fever she came and woke me to tell me. I was concerned of course, but I actuallly dosed back off to sleep, knowing we needed to wait for the fever to be there an hour. A year ago, I would have been freaking out, jumping to 100's of conclusions about what was going to happen to Emily, and this time, I thought to myself, let's just wait and see, she's doing so great, she's going to be fine. Now that she most likely has H1N1, I am still not too worried. Tracy and I are both a little nervous but confident Emily will fight through this like a champ. Emily was also very calm and matter of fact about having to go in to the ER. We all know the drill by now.

When we were in the ER we ran into Dr. DeSouza, who was the attending physician WAY back on March 9th 2008, and was the person who diagnosed Emily originally. He still remembers us and the day as well. He said, "next time we run into each other, let's hope it's Stanford Shopping Center".

More updates as this virus progresses.

very long scheduled day at the hospital

Today was Emily's scheduled monthly IV chemo and physical exam. Our N.P. Karolina ordered a stomach x-ray again today to make sure Emily's blocked GI had resolved. We suspected it had and sure enough she is cleaned out, which is really great news. That meant that we could go ahead and continue with all the scheduled chemo.

For some reason our N.P. was really behind on her schedule today. She likely had a sick child, or a new patient, or something but she was going to be so far behind that they gave us a pager and told us to go grab lunch. Emily is on her monthly Prednisone this week and she doesn't like the cafeteria so unfortunately that led to her not eating much, yet still being hungry for the rest of the day. Her x-ray was at 11, and we finally got to have her exam at 2:30. Then after that and being cleared for chemo, we didn't hit the day hospital until 3:30 or so. I went home to make dinner for the girls when they got home from picking up Haley and having a quick play date with Olivia and Stella the girls good friends. Emily's good friend Olivia lives near my Mom who takes care of Haley on Wednesdays when we go in for labs or treatment. So one of the big things to look forward to after chemo is getting to play with Olivia for 30 minutes or so at the Haley pickup. Haley is hard enough to "control" at the hospital, but with the swine flu no one under 16 is allowed in the hospital unless they are a patient. So no Haley in the hospital I think probably until Emily is done with treatment.

We still don't have today's lab results. Karolina warned us that she was so far behind today that she might not get back to us until the morning, and for tonight just to continue on her %100 dosage. I think since she is on her prednisone it may mask the effects of her cold on her ANC, so she may skate by and be able to continue at %100 dosage this coming week. We shall see.

125 days of treatment to go.

Long unscheduled day at the clinic

Emily has been having issues with constipation for a long time. I don't write about it much because I don't want to embarrass her. Today things got a little worse so we had to go into the clinic. Tracy gave Emily her morning Em all of a sudden didn't feel well and both threw up and had diarrhea, really watery suggesting there was something obstructing her GI tract. Since we've been going through GI issues they wanted to see her. After an exam and a lot of questions they decided to give her an x-ray and see if she was truly blocked. It turns out she is blocked in two spots in her intestine and the N.P. was surprised she wasn't complaining of more discomfort. We are treating her with magnesium citrate tonight. It's really important that she is un-clogged before IV chemo on Wednesday, or they may not give it to her. The Vinchristine, her IV medication, is known to cause really bad constipation and is the original cause of this complication. All the exposure to her vinchristine is catching up to her side effect wise. Luckily it's fairly easy to treat.

On the upside she was able to get a dose of swine flu vaccine. The clinic had just got 200 doses today. They didn't actually tell us, I just asked if they had some, and the N.p. seeing us today ordered us a dose. She needs to get a second one 4 weeks from now. Hopefully by then it will be a little easier to get.

Emily is back to %100 chemo dose.

After about a 6 week lag Emily has been cleared to go back to %100 chemo dose, since her ANC was over 1000, at 1039. You can see that it was barely over so it's really important that she attempts to avoid sick people and to wash her hands like crazy. Both Tracy and I have really been pushing the hand washing, sometimes having the girls do it for no reason. We also mix sanitizer in there from time to time.

We were hoping that Packard would have the H1N1 vaccine today, but they are still waiting. I hope they get it soon, I really want Emily to get it. I've been following it on the news and they expect it to peak next week. Luckily her school hasn't had any out breaks of it yet.

This weekend is a big one. Friday is Emily's actual birthday ! She is really excited about her birthday this year, and she is so much healthier than last year so we are trying to make it as special for her as we can. Her class is already having a Halloween party that day but Em still wants to bring donuts, so she's going to. On Saturday some good friends of ours are having a Halloween Party which we are going to go to during the afternoon, and then come home to our neighborhood for trick or treating. Emily and Haley are super excited about trick or treating. Emily is going to be a Ferry and Haley is going to be a Witch. On Sunday is Emily's birthday party which is going to be a ice skating party in the afternoon. It's going to be a long and fun weekend, and of course full of sugar.

(Wahoo fish Taco will give your kids a free meal if they give them all of their Halloween candy. Not a bad idea.)

remain at %75

Emily had another week of good lab results. Her ANC was around 2600 so that means she will stay on %75 dosage again this week. Her protocol says she can only step up every two weeks after a reduction, so this is exactly the news we wanted to hear. When Emily changes her dosage of ANC she gets a rash on her face, we've noticed it three times. She had it again this recent reduction in chemo, it isn't anything to worry about. There really isn't anything remarkable going on in Emily's treatment. We just are trying to avoid crowds where there could be sick people.

Emily is getting ready for her birthday party. She is going to have an ice skating party and she is really excited about it. She has only ice skated once at a Brownie event but she really wants to do this and she is really excited about it.

great labs again

Emily had her weekly labs and her ANC has bounced back up to 3200. That's good considering her %50 dosage. Now she will go up to %75 dosage for this week, and hopefully the following week. After that, and if she can stay virus free, she will be back at full dosage on her chemo. I feel a lot better having her on %75. The whole family has had the flu shot as of today. I was the last one to get it, I waited until they had it at work, so I could get it free. In a week or so Emily should be given swine flu vaccination when the clinic gets their allotment of it.

Another monthly IV chemo complete

Emily had her monthly IV treatment and physical exam yesterday. The exam and IV treatment went very well, she looks good and there were no issues accessing her vein for IV and lab draws. The vein in her left hand is getting harder to access, she has to hold her hand in a specific position for it to work. It is getting scared and hard the nurse said. Good thing we only have 5 of these remaining in her treatment.

Emily has gained some weight again so we are once again increasing her prednisone dose from 13mg x3 per day to 14mgx3 per day, for her 5 day Prednisone flash. The side effects of Prednisone are troubling from minor ones to some possible yucky severe ones. I think of all her medications we see the effects of Prednisone the most.

Her ANC was really low considering she is on Prednisone. Usually on her Prednisone week we see ANC's of 4000 - 6000, this week just 1840. What you can read into that is she is still really battling her virus, or that she is fighting a new one. Her school is a virtual virus incubator right now, and we have been holding her out of school more often, through she is there today. With an 1840 she remains on a %50 dose of her chemo. I think it's going to be a while until she's back on %100 dosage. I'd like to remind everyone to please get your flu shot, wash your hands more often, and stay away from people when you have a cold. Yes I am talking to you.

without going into the details Emily had a really challenging day yesterday. I went to pick her up from Gymnastics and she told me she had spent most of the hour in the bathroom crying. I told her that I thought it was incredible that she was even at Gymnastics hours after being in the hospital for treatment. After Gymnastics she choose to do her homework over watching TV with me, again I was proud of my little girl.

As expected, a week off chemo and Emily's levels increased !

Emily was on hold from her medication this past week. While it's a worry therapy wise for me, it's also just part of therapy. You are on this treatment for 2 solid years and you are going to get a cold or two. Emily enjoyed the break for a few reasons. Firstly we have to give her the Mercaptopurine (6MP) at 11 P.M, which means every night, we have to wake Emily up at 11, enough woken up that she can swallow two pills, or on Thursday nights 10 pills. So, she really enjoyed some solid nights of sleep, she commented on it several times during the week. On therapy she also can't eat any food after dinner, so her stomach is empty at 11, it's very important. This week she got a kick out of having an after dinner snack. This points out simple pleasures we all take for granted. I asked her if she felt more energy or "better" when she was off her medication. She told me that her energy seemed the same, but she wasn't nauseous all the time. To this point I hadn't thought she was feeling nausea but apparently she has been. The Mercaptopurine is the medication that in larger adult doses makes you throw up and not be able to eat, the symptoms we all associate with chemotherapy.

Today was lab day and her ANC had increased from around 340 to 1100. That's still low, but high enough to resume chemo at %50. Starting tonight at 11pm she'll be back on therapy. When her N.P. reviewed the lab results she could see leading indicators in her neutrophils that she is on her way out of this virus. With an ANC of just 1100 and resuming chemo, we need to be on high alert that she could slip back into being neutropenic over the week. But in usual Pepper fashion we're just going to live our lives as normal as possible, minus trips to malls or movie theaters. We could pull Emily out of school but we try to limit how often we do that.

Right now Emily's two top priorities are, planning her 8th birthday party, and what to be for Halloween.

Update on Em

We kept Emily out of school today with her ANC so low. She didn't mind too much, but it's funny or maybe typical that on days she has to go to school she wants to stay home, and then on days when she has to stay home, she's sulking because she didn't get to go to school. Her teacher, Mrs. Nishimoto dropped by some work after school, so Em didn't miss out on the days lesson plan. It's great living two blocks from school and we are blessed with a truly awesome school, great teachers and administration.

During the day we found out that one child in Emily's class has strep throat and another has a confirmed case of Scarlet fever. (Honestly I somehow thought that didn't exist anymore, but it does). So that data added a bit of stress to an already stressful situation.

Putting all the worry aside, Emily is doing fine, no fever and I think her scratchy throat sounds a little better. And even if she were to start to get something now, she has a day off chemo and I am sure her white blood cell count is increasing, and getting close to levels where we wouldn't need to be as worried. I think I want to keep her out of school tomorrow just to be sure and keep exposure all the germs that just naturally exist in a school.

I think I wrote a few weeks back that she would probably get sick when school started, and sure enough it happened. After a day to absorb the news, I can start to see that it's going to be all right.

This roller coaster ride only has 167 days left.

Emily's cold caught up to her, ANC at 340, chemo discontinued.

The cold Emily has been fighting here caught up to her, and today her ANC plummeted to 340, which is pretty neutropenic. We need to stop all chemo and watch for fever and be ready to go to the hospital if she start to get one. Obviously given the flu season starting early this is a pretty big concern. She has not had her swine flu vaccination yet either. I haven't discussed this with Tracy yet, but I am planning to hold her out of school tomorrow so her counts can regain. Next week they will retest her and hopefully we can start chemo again. Taking complete breaks like this makes me very nervous and stressed out.

300th Blog Post

the Blog has reached another milestone, the 300th post. It's amazing every time I think about how much Emily and our family has been over the past 18 months. I can't believe it has been that long. To me it seems like Emily just got sick a couple months ago. I am so glad to have the blog as a record of what has gone on, and for Emily to have for when she wants to know more about what happened to her.

Yesterday she had her weekly labs, and she was doing great. Her ANC was around 2600 which is right where we would to see it for this week of her monthly cycle. She even has a little cold she is fighting. She seems to be really strong right now !

18 Months down, 6 to go.

Today Emily had her monthly IV chemo treatment and physical exam. This month went a lot more smooth than last month. Last time it took them 4 pokes to get a good IV, and today they got her on the first try. The infusion of chemo was uneventful and was over fairly quick. Her exam also went well, again nothing extraordinary to report. This marked the 18th month of treatment, we are %75 of the way through Chemotherapy.

This week Emily is on Prednisone and quite moody because of it. With her recent dosage increase we have noticed more side effects all the way around from her chemo. She's puffier, moodier, and a little less coordinated, all normal side effects for the medication she in on. Haley also has a cold and Emily is starting to get the symptoms we think, so we'll see how that goes as the week goes on.

Today at the appointment I had questions for Karolina, our NP. What about the swine flu? They feel that for Emily the risk of swine flu is no greater than any flu, she doesn't need to get either. If she did get any type of influenza they would give her Tamiflu, which has been quite effective with the hand full of cases they had last spring and already this fall. Once the vaccine is ready, Emily and all the high risk patients in the country will be the first to get the shots. I think the whole family will be getting both swine and the regular flu shot at that time. Karolina cautioned us that it's likely with flu season coming on that at some point Emily will most likely get neutropenic and may have in patient hospitalizations again. It doesn't mean that her treatment isn't going well, even as we get up close to the end, it's just an effect of being on immuno-suppresive drugs.

I also asked her about what happens at the end of chemotherapy. I have avoided asking about it, but I feel like it's time to start thinking about this part being over. For the first year Emily will only have to go to the clinic once a month for an exam and a CBC blood draw. Then every other month the second year, then every three months the third year and so on. At 5 years if she is able to avoid a relapse she would be considered "cured" of this episode. At that point she would be just as likely to get cancer as any of us are at any time. Then she will go into an after care program, and she can access that for the rest of her life if she chooses to do so. The after care program collects data from kids who have gone through chemotherapy, for example they will measure her learning abilities, growth, and other vital stats. They learn valuable things about the long term effects of treatment, and are there to both help the kids who have gone through chemo, and also help the medical community make changes and advances in treatment for people who will be diagnosed in the future. Karolina said, "at some point Emily will have questions about having children", and she will be able to consult with the after care program to learn the latest about what they know about the risks she may have due to her treatment.

Today we also ran into Dr. Kara Davis, who was the Dr. who was on call the first weekend Emily was hospitalized 18 months ago when we started this battle. She hadn't seen Emily in a very long time, and right out of her memory she said "Hey it's the Peppers, how are you Emily?" I am always impressed with the staff and how well they get to know the kids. To much of the staff I am "Emily's Dad" but everyone knows who Emily is, from the pharmacists, to the woman who hands out our parking passes, it's quite common to be walking around the hospital with her and someone in a lab coat passing by says, "Hey Emily". Since she has to be there it's kind of nice for her to feel like she's a big shot, and it's also nice she feels so comfortable there.

Quick update...

This is Tracy this time, since Chris has been at Burning Man since Wednesday. He asked me to update the blog while he was gone and I kept putting it off/forgetting until now. The main thing we wanted to say is that Em's ANC from Wednesday 9/2 was 1600, which is up from 900 the week before, and that's without decreasing her chemo dose. We were super-thrilled, because we (or at least I) thought that another week's worth of school germs would drop her counts further. But they didn't! Yay! So she got to power through another week of full-dose chemo. Chris was more than thrilled that she was not neutropenic while he was at Burning Man, where he would have no access to the "outside world." If she had been, let's just say it would have put a significant damper on things while he was there.

So while Chris was out of town, my parents drove down from Auburn to help watch the girls while I was at work some of the days. I'm so thankful that they were able to help us out like that. Chris will be home later tonight or tomorrow, depending on how tired he is! Then you will be back to your regularly scheduled blogger.