Thursday, January 28, 2010

Second to last chemo complete, and change in team.

Yesterday was Emily's second to last monthly IV Chemo ! The exam itself was unremarkable and went well. Most of the discussion was around all the tests Emily will need at the end to prove she is completely cancer free. She's going to need a CT ad PET scan, and will have to have some light surgery to get a spinal tap and to get some marrow from her CNS. We will be doing the scans before we go on our cruise and then have the surgical procedure once we get back. They like to wait a while to take the marrow because they would t' see a relapse if they did it while the effects of the medication are still around, it will take about a month of time to be safe for the procedure.

Emily's social worker approached us yesterday to tell us she wants to nominate Emily to be Leukemia and Lymphoma Society's "Girl of the year". Each year the society chooses a local boy and girl who are survivors of cancer. she would be on posters and we would get to speak and tell Emily's story, which I think is so inspirational. (selfishly). So you locals may be seeing Emily on posters in the Bay Area.

The biggest piece of news yesterday took us completely by surprise. Our N.P. Karolina told us that she is moving and won't be here for the rest of Emily's treatment. This is a big deal for us, since at Packard your lifeline to treatment and your physician is through your N.P. She's part of our team and it feels weird to have her leaving. She's the one who knows all the details of Emily's care. I am glad we are so close to the end of treatment, but mixed feeling because even after maintenance we have 5 more years to go. We're really going to miss her and also wish her the very best in her future. I can't even begin to say how thankful we were to have you Karolina, you are an amazing person. I will always feel in debt to you for what you've done for me.

Thursday, January 21, 2010

Resume at %50

Emily's ANC was around 1250 yesterday at her labs. this means she can resume her therapy at %50.

I was surprised it was as low as 1250 given she wasn't on therapy, but that shows the how strong she is having to fight this virus. Next week is her IV chemo and prednisone week, so that will increase her ANC most likely.

Of of today there are exactly 7 weeks of treatment left.

Sunday, January 17, 2010

Emily is home, quicker than expected.

Emily got out of the hospital earlier than expected and got to spend last night in her own bed. Her labs earlier in the day Saturday were good, her ANC was around 650. They also track percentage of neutrophils in the WBC count and can see a virus start to clear, even before the symptoms go away, as I recall she was admitted with %39 and on Saturday was up to %54. Basically what they could see was that Emily is getting better. She also had not had a fever since she was admitted. Since 9pm Saturday night was technically 48 hours after her first IV antibiotics, I asked day I asked for a conditional discharged at 9pm. The plan was to keep her overnight and discharge her during rounds on Sunday morning. Since all the signs looked good, and Emily herself seemed totally fine relative to why she was there, they agreed to let her go at 9pm. And then ended up giving her last IV antibiotics early and letting her go around 8pm. It was great to all be home last night. It all depends on external factors but there is a good chance that that was her last in-patient admission in her treatment. Technically she will be admitted for scans, but I mean overnight in a ward. All her nurses during this stay commented that she was their easiest patient and their happiest patient. I had a fairly long chat with Dr. Dahl, the oncologist on call this weekend, and he thought she looked great. There are no new concerns and she seems to be doing great overall. Dr. Dahl is who you get if your child has Leukemia and he has excellent bed side manner, it's like talking with your Dad, and you can tell he loves children. Also since Leukemia and Emily's form of Lymphoma are so related, he was a great person to have examine her with fresh eyes.

Emily is still on hold from her chemo until labs Wednesday, when she will likely resume at %50 chemo for the following two weeks.

There are 53 days of treatment left.

Friday, January 15, 2010

Hospital day 2, update

Emily was admitted to her room in 1-North last night. She is doing great. she had a nice night of sleep, has watched about 5 movies, done some art projects sent down from the play room, and we walked over to the Stanford side of the hospital to listen to their live Jazz series they have on Friday's at the in the Bing Atrium. This morning Dr. Dahl was doing rounds on 1-North and saw us late morning. He explained that even though Emily looks great, given that she was neutropenic and had a fever spike, the protocol for her treatment says she needed to be hospitalized for at least 48 hours. She needs to get IV antibiotics and regain her ANC count. In 48 hours the results of her blood and urine cultures will be back and if they are negative and her ANC is at a certain threshold, she will be released. Unfortunately for her 48 hours will be at 11pm Saturday night, and they usually don't discharge people at night, so she may be in here until Sunday morning.

Yes its' stressful to have a child in the hospital, but overall Tracy and I are not worried one bit about this, it's just part of treatment, part of the "drill".

We have a nice private room tucked in near the Stem Cell transplant part of the ward so it's very secluded and private and quiet. Emily also likes the food here again, that's how long it's been since we practically lived here for a few months back in 2008.

more updates when I have them. Get out there and have a wonderful holiday weekend.

Wednesday, January 13, 2010

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.

Wednesday, January 6, 2010

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.