Sunday, March 29, 2009

March Prednisone flash is over

Emily had her final dose of her March Prednisone flash last night. Today she is recovering from it. She has a hard time coming off the high dose usually the after she finishes. This month she handled the monthly Prednisone better than the past couple months having fewer food cravings and mood swings. Today her cheeks are red and she seems depressed but I am confident she will start to feel better tomorrow.

This weekend Emily went to a birthday party on Saturday and had a great time. Today she and I went to see Race from Witch Mountain, we both liked it.

On Wednesday she will be having her weekly labs and we hope to remain at %75 chemo dose if her ANC is high enough. Her protocol doesn't allow her to return to %100 dosage until she can maintain ANC levels for two straight weeks, if for some reason she drops this week its possible we could reduce dosage. The protocol for increasing and decreasing dosage is, 0-500 ANC = holding medication, 500 - 750ANC = %50 dosage, 750-1000= %75 dosage, 1000+ ANC = %100 percent dosage.

Wednesday, March 25, 2009

Great exam and xray results. (250th post)

Emily is doing really well. She and I had a fantastic ski weekend up in Tahoe. Emily experienced her first heavy snow storm as it snowed around 18 inches between Saturday afternoon and Sunday evening. Due to an issue with car keys ;-) she and I had to stay up an extra night and miss work and school on Monday. (I lost our car keys in the snow putting on tire chains.) I am still amazed that Emily and I got in two ski trips this season. A year ago I didn't picture her treatment going this well. Even looking back at photos from last fall, she really has bounced back to her old self.

Today was her monthly IV Chemo and physical exam. She also had her quarterly chest X-Ray. (every quarter she gets either a chest x-ray or a CT Scan.) The results of the chest X-Ray were great. The small mass of scar tissue in her chest is even smaller than last time they looked at it. It has gotten smaller and smaller each time they have scanned her. To remind you, this mass isn't a tumor but scar tissue left over from the massive tumor she had the collapsed her lung and displaced her heart when she was first diagnosed. Without doing a biopsy they can't say with certainty that it's not cancerous, but there are many signs that it is just scar tissue. Dr. Link says he sees this type of scar tissue often and he's not worried that it is anything bad. With 30+ years of Oncology under his belt, I trust whatever he says. Dr. Link was not there today, he is in Washington D.C. at a conference. We were seen by Karolina our N.P. who is our main contact for Emily's care. Emily's physical exam also went very well, no concerns. She had her labs drawn and her blood levels have really rebounded, her ANC was 2200, so we are going to increase her chemo dosage to %75 per the protocol. I hope with flu season winding up that we don't have to reduce dosage again for a while, but we will see.

On Monday night Emily had her meeting with the Make-A-Wish foundation. For now I am not going to share what she wished for, but once it is official I will let you all know. I do want to say something about Make-a-Wish based on some questions and concerned comments I have received. A child DOES NOT need to be terminal to receive a Wish. Before I knew much about Make-A-Wish I thought that was the case. One of my friends at work was also under this impression and wondering why I was so happy she was getting a wish. So, no worries many kids who receive Wishes go on to live normal healthy lives. You do need to have a malignant type of disease to qualify, which Emily has.

This is the 250th post of Emily's blog, thanks for following.

Saturday, March 21, 2009

Ski trip to Tahoe.

Emily and I are up in Lake Tahoe for the weekend. We left Friday at noon and will be here until Sunday afternoon. Emily and I went to bed around 10 last night and were up at 6:15 so I could have her to Northstar at 8:45 for her lesson. We had bacon and eggs and orange juice for breakfast. We were on the mountain by 8:15 so we were able to hang out together in Starbucks before her lesson. She was a little nervous about an all day lesson but she did great ! She was with a group of kids her age and they were on the mountain from 9 - 3. While Emily was in ski school, I met up with from friends from work and skied with them. I picked Emily up after class and we drove home and went out to dinner. Tonight we are going to watch a movie. We are not going to ski in the morning so we can sleep in and head home after lunch. It is supposed to snow up to 2 feet tonight, so tomorrow's drive home may be tough.

Wednesday, March 18, 2009

Emily's levels have come back

Emily had her blood test today and her levels are coming back, however they are keeping her on a reduced dose until they are up even more. Her WBC = 2.2, Hgb 11.9, Platelets 407K, ANC-1100. You can see her ANC has actually dropped since the ER visit on Saturday, so she is still fighting some sort of virus. She will remain on a %50 dosage. I expect her to be back to normal next week and for them to increase dosage, but you never know what is going to happen. Next week is her IV chemo and physical exam, along with her monthly flash of Prednisone. Prednisone causes your ANC to shoot through the roof, so it's very likely she will be back on full dosage.

On a more fun note, Emily and I are going on a ski trip together this weekend. Just the two of us. We are both really excited about it. We are going to leave at lunch time on Friday and ski Saturday and Sunday. I plan to put her in a lesson for some of it, and for us to ski together the rest of the time. It should be a fantastic trip. On the way home we are going to stop in Auburn to have dinner with Tracy's parents, Grannie and Grandpa Steve.

Overall things are looking better than last week.

Saturday, March 14, 2009

Update on Emily and a primer on ANC

Emily is feeling much better after they were able to control her fever and throwing up last night in the ER. She felt good today and even went and played in the park for a little while. She was sort of on a high from the tylenol and IV fluids and felt much better. This afternoon she took a three hour nap, which was good. But she did wake up with a fever of 100.0, so she's still fighting something. We don't need to be concerned about the fever, unless we get a 101.3 or higher after 4am, if we were to get that after 4am we would have to go back to the hospital and have her cultures taken again and to test her ANC level.

Today I was asked why or how does this ANC level seem to fluctuate so much from day to day? For example it was 510 on Wednesday and then 1570 last night. What is ANC? To remind you it stands for Absolute Neutrophil Count. It is not a White Blood Cell count, but is the concentration of neutrophils in the while blood cell count. ANC equals the Total WBC count multiplied by the total percentage of neutrophils (segs plus bands). So you can have a high White Blood Cell count, but a low ANC, it's rare but it is possible. Emily's Chemotherapy is immuno-suppressive, The 6MP and Methotrexate lower the immune system by suppressing the bone marrow from making things such as White Blood Cells. When any of us gets a virus or bacterial infection, our ANC gets lower, but if you are on Emily's Chemo it can drop to dangerous levels, aka Neutropenia. That is what most likely happened to Emily, she was getting this virus this week and that on top of her Chemo lowered her ANC to 510. Then we reduced the Chemo dosage, as you will remember. So her marrow started to work more efficiently and her ANC levels shot up to 1570. That's still a pretty low level but once you get above 1000 your body can fight off viruses. The BIG worry in all of this is if she were to get something like Strep or something bacterial, and if her anc were lower than 500, you can have real issues, including a high risk of death. That's why she needs to be in a ER within 30 minutes of a fever, when she is neutropenic, so they can start IV anti-biotics immediately. So to finally answer the question, Emily's ANC fluctuates a lot because we are constantly trying to control it's range with the chemo, while dealing with external forces such as virus. ANC is the main diagnostic value for Lymphomas and many types of Leukemia.

3am trip to the hospital

Emily woke up Friday with a sore throat that didn't go away all day. Knowing that her ANC was 510 on Wednesday I was pretty sure we'd end up in the hospital with symptoms like that. Sure enough this morning at 3am she was burning up with a fever of 103.1. VERY high fever. We rushed her to the E.R. at Stanford so they could take blood and urine cultures, and to check to see where her ANC level was. Emily threw up in the car ride up to the hospital. I stayed home with Haley and Tracy and Emily went to the hospital.

They got seen right away. Her heart rate was also really high, at 150. They took her blood, and started an IV. They were able to access her vein on the first attempt which was nice. After they took her blood they were able to give her some tylenol. We aren't allowed to give her tylenol at home because it could mask a fever, but since they had taken her temp and blood, they were able to give her some.

The good news is she turned out to not be neutropenic, her ANC had shot back up to 1500, so she will be coming home this morning and can fight whatever she has here at home. They are keeping her a little longer to bolus some IV fluids into her to try to slow her heart rate a bit. The bolus was optional but Tracy and I both thought it was a good idea. If she has to go through the ordeal of getting an IV start, why not use it, and get the benefits of quick hydration.

To me it seems like every time we celebrate how great Emily is doing, we get reminded that she's not better yet, and we have a ways to go before a simple fever that most kids get isn't a big deal, for the next year at least they will be big deals. I am so pleased she wasn't admitted this time.

Wednesday, March 11, 2009

Not the best lab results today, we need to reduce dosage

Today was our usual day to get labs and we got results that were not what we expected. Em's ANC is at 510 which means she is borderline neutropenic and as a result we have to reduce her Chemo dosage. She's just 10 points away from full neutropenia we have to act as if she is. What that means is her immune system is over suppressed so reducing the dosage of her medication should hopefully get it back within the levels they like to see. You worry if it gets too low, and if it gets too high. If her levels drop anymore than what they read today, she would halt chemo all together and wait for the anc to regain it's level.

What does this mean? It means Emily can't be around sick people, and the best way to control that is to not have her around large groups. The tough part is tomorrow is the Second Grade performance which she is in, and really looking forward to, but really we shouldn't let her go. We are going to call her Nurse and see what she advises. Maybe she can go in for the performance and then leave? We will see. It's really upsetting that this is happening at all, not to mention right before something she is really excited about. It's also scary to think about why her ANC dropped to some pretty low levels. And the last time this happened, she ended up in the hospital. The roller coaster of cancer continues.

We will have to wait and see what happens, I had a nice break from worrying. We've been here before and I am hopeful she'll rebound soon. Let's hope she can make her performance tomorrow, it's going to depend on what the doctors say.

UPDATE: Emily's NP got back to me via email, and Emily WILL be able to be in her second grade performance tomorrow!

Monday, March 9, 2009

1 Year

Today is the one year mark of when Emily's life and our lives changed forever. March 9th last year was on a Sunday, and the day started like almost any other day. Emily had what we thought was an ear infection that wasn't going away, but we still let her go sell Girl Scout cookies in front of Albertons with her troop. I still remember not wanting to take her into urgent care because I was thinking that whatever she had "wasn't that serious." I remember the reaction of the Doctor at Palo Alto clinic reacting when she didn't hear Emily's left lung, and the alarm the X-Ray tech had when he saw her film. I also remember trying to take a picture of Emily on the stretcher as she was being loaded into the Ambulance, thinking it was almost "fun". I had no idea that we would be staying in the Pediatric Oncology floor that night. No idea really what Lymphoma was, and how this whole event would shape our lives. Emily's heart rate would climb to the mid 150's that day and stay there for 3 or 4 days. It was unbearable. I remember figuring out that she had a tumor by listening to the Doctors and nurses in the ER, and staying in denial about it. They were saying "her films aren't showing layering." I remember not wanting to tell her what floor she was being admitted to, because "maybe it's a mistake and she just has an infection" I remember her slipping and Tracy telling me "We are going to lose our baby." I remember going outside to take a break, and calling one of my best friends, Guy, who I knew would rally my network of friends, because I knew we were going to need support. I remember feeling scared and hopeless, and seeing that same expression on Tracy's face, and my Mom's face, and later when Grannie Carol and Grandpa Steve showed up. I remember walking outside of the E.R to a cluster of Televison vans and wondering what was going on, it was the same day that a Santa Clara Sheriff had fallen asleep at the wheel and killed two bicyclists. I also remember telling myself that there were people having a worse day that me, the parents of those two bikers. I remember going home very early on Monday morning, leaving Tracy and Emily at the hospital, and seriously wondering if I was ever going to see Emily alive again. To me, cancer was a certain death sentence. The next 4 to 6 weeks were the roughest I have ever experienced in my life, and I have had to deal with some pretty unpleasant things.

March 9th is just not a happy day for me to remember. However, there are a lot of amazing things that have happened since Emily has been diagnosed. We are blessed to have some of the best medical care in the world. Emily was able to go into remission on their first attempt, and to date she has stayed there. We were able to do a lot of things as a family despite dealing with Cancer, Blood Clots, and Chemotherapy. I feel like we almost did more things and were more out going than we were before her diagnosis. When I look back at our pictures from our Tahoe trips over the summer, Emily looks so sick, but she was still able to travel there, and to have a really good time. She went through so much during her first 9 months of treatment, she taught us all a lot about being brave, and how one can make the best of a truly challenging situation. She dealt with her baldness in a very mature and matter of a fact manner. I am proud of Emily, and also proud of Tracy, Haley and I, for the way we have dealt with this change in our lives.

I hope this next year goes as well as this past year. There will be challenges for sure and we are ready for them. I haven't said it in a while in the blog, but again I wanted to thank each and every one of you for keeping up with Emily's care, for your support of her and for Tracy Haley and I, we would have had a much harder time without it. I have posted 245 posting on the blog and had at least 30,000 page views on it. It's been very helpful to me to get my feelings out, and I hope it's been helpful and inspirational to you. This next year I plan to volunteer and give more back to help fight cancer, and raise awareness, I hope you do too.

Wednesday, March 4, 2009

Emily still at %100

Today was Emily's lab day, and her results were all in line to keep her at %100 dosage for at least another week. Her ANC was pretty low at 1100 but that's not neutropenic and hopefully will rebound a bit since it's close to the line you dont' like to drop below. She had a lot of nerves about getting her blood draw today since last week's chemo was rough, but she made it through like the hero she is.

Tomorrow night Emily and I are going to the Sharks game at the HP Arena in San Jose. I am looking forward to a great hockey game, we had a great time when we went before and I expect we will again. I love going to events with Emily and she's quite the Sharks fan.

Overall Emily is doing great and so are Tracy, Haley, and I.