Wednesday, November 25, 2009

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.

Monday, November 23, 2009

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.

Friday, November 20, 2009

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.

Thursday, November 19, 2009

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.

Wednesday, November 18, 2009

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.

Friday, November 13, 2009

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.

Wednesday, November 11, 2009

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.

Tuesday, November 10, 2009

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.

Monday, November 9, 2009

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.


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.

Wednesday, November 4, 2009

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.

Monday, November 2, 2009

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.