Monthly Prednisone

Today was the last of 5 days of Emily's monthly Prednisone blast. For whatever reason it really effected her this month, both in mood swings and eating binges. She ate so much her stomach is distended this month. And she was going from being happy to screaming mad almost in cycles. I am happy it's over for another 3.5 weeks. Prednisone is an amazing drug, useful for so many things, but comes with it's share of side effects.

Emily and I are seperating her cooking orders so she can start delivering them this next week. She and I are also going to another Sharks game this week which should be a lot of fun. She will also have her labs on Wednesday.

We are coming up on March 9th, which marks one year since diagnosis. I don't know how much that date means to Emily but it's a big one for Tracy and I. I think it's going to be a hard day and week for me. I am glad Emily is doing so well or it would be an even tougher day, but in a way I feel like a big part of me and our family was taken away on March 9th. I have and will remain to be positive about all of this because being strong is holding us together, but it's hard to do when the future is so uncertain. Should I be happy, scared, sad, probably all of the above.

On this past Friday I met with Sherri Sayer who is the Chief Government Relations officer for Lucile Packard hospital. She and I talked about ways I can volunteer to help with their initiative to get funding and approval for a new childrens hospital in the future. It's going to be a good project to work on and I am looking forward about speaking about how important it is to have a place like it in our community.

Monthly IV Chemo, High School Musical on Ice, Girl Scout Cookies, and Beads

Today was Emily's monthly IV Chemo, labs, and physical exam. Everything went really well, she had her exam first and both her NP and Dr. Link thought she looked great. Most of their questions were around how Emily is doing in school and if she is having enough energy to be running around and playing. They were really pleased that she was up skiing last weekend, and that she's doing so well in school. Her labs were in line with expectations so she will remain on %100 dosage for at least the next week. Next month they ordered a chest x-ray so we can have a look what is going on inside. Every 3 months she will either have a chest x-ray of a CT Scan to keep monitoring her. They do not plan to do anymore PET Scans unless they see something that concerns them in a CT Scan. Her labs and IV Chemo went well, but they had to poke her twice because they missed the vein on the first attempt. Emily was very brave as usual and we were so proud of her.

Tonight Emily is at the HP Pavilion in San Jose watching High School Musical on Ice. Santa had left her tickets in her stocking and tonight is the big event. She is really excited and her seats are on the ice so she will be up close to the action. After the ice show, one of the stars from High School Musical, Corbin Blue, is going to have a mini concert which she is also very excited about. I am sure she and Tracy will have fun.

We are picking up the Girl scout cookies, so if you ordered them from Emily she will be delivering them soon, also if you are still interested in ordering some, let us know. Thanks for all your support on the cookie sale, Emily was a top seller in her troop, and some of the proceeds go directly to her troop.

I sent a link of the video I posted last week to the founder of Beads of Courage. She was so moved by Emily's video, and wrote back to me to thank me for sending it to her. She told us that sometimes she feels so removed from the kids who are in the program and my video helped to remind her why the program is so important, I was glad I could show her just how important the program is to us. She also offered to send Emily a special "remission bead" and a Beads of Courage T-shirt.

Ski weekend

This weekend we were up in Truckee CA, which is very close to Lake Tahoe and right next to Donner Lake. Last weekend in the storm the area got multiple feet of new snow, which made for great conditions for playing in the snow and getting some skiing in. We were staying at a home which was perfect for a nice cozy weekend. We are so grateful to the Hansens for the use of their home !

When we arrived we all got on our snow clothes and went outside to play in the snow. The house had two snow ball makers, which I had never seen before. Emily and Haley had a lot of fun playing in the snow. We also made a "snow fort" which some shovels. On Saturday Emily and Tracy went skiing and Haley and I stayed at the home base. I love to ski but since Tracy and Emily are at the same ability level, we thought it would be fun for Tracy and Emily to take a private lesson together. Unfortunately Tracy twisted her knee so her day ended early, but Emily completed the lesson by herself and had a great time. She was so happy and proud of herself at the end of the day. It put the biggest smile on my face.

Today we woke up to snow falling, though it's a pretty warm storm so it's not sticking to the roads too much and I am expecting a relatively easy drive home. Having gone to college in Colorado I am very comfortable driving in snowy conditions.

Looking ahead to the week, this is Emily's week for IV Chemo and her monthly course of Prednisone. She will also be seeing Dr. Link and having her labs drawn.

Emily talks about her beads

I wanted to post a new video to the Blog, it's been a long time since we have done that. You can see from the video how great she is feeling these days.

Today she had her weekly labs drawn, and the results were in line with what we expected. She will remain on %100 dosage of Chemo. Her platelets were also high enough for her to go skiing this weekend ! She's going to do a half day lesson and then hopefully ski with me the second half of the day. I intend to get video of that too, at least some pictures.

Nothing to post!

For the first time in about a year, I have no updates to post. Emily is doing great and enjoying her week off of school for Presidents week. She has labs tomorrow and I will have an update after we get results. I missed updating the blog so just thought I would post and let you all know we are doing great.

Emily's Labs

Emily had her labs drawn yesterday. Everything looks to be ok, her ANC was low at 900 though. That's a good and possibly concerning thing at the same time. At 900 she doesn't have much to drop to be neutropenic, which we don't want to happen, but at the same time consistent high ANC is a sign that something could be going on cancer related. So seeing the drop is actually reassuring to us. It also means she's probably fighting a virus, which at this time of year is pretty standard. We are having a dinner party of 18 people over tomorrow night, so that's the big plan for the weekend. Next weekend we are going skiing.

Follow up

No real updates on Emily, she is doing great and will have her weekly labs tomorrow, and I will have an update.

Yesterday I got an email from the CGO (Chief Governance Officer) of Lucile Packard Hospital and she wants to take me up on my offer to be parent spokesperson on behalf of the hospital in their battle with Palo Alto to get clearance to build the new Hospital. To remind/update you, Stanford Medical Center, which is comprised of Stanford Hospital and Lucile Packard Hospital wants to build an entire new facility. While Stanford is a world renowned medical institution, the facility is dated. I can attest to that because Tracy has worked there for years in one of the old wings. Lucile Packed hospital is much newer but it's just too small, which I can also confirm from our in patient experience this past summer. The Pediatric Oncology unit which just opened is great, but still really too small. Let's face it, more kids need to have the care Emily is getting, I can not imagine being told, "Sorry, we don't have room to cure your child." but it could and probably does happen.

When I was touring the Ford Center after it opened, just walking the ward my myself I struck up a conversation with the Director of Patient relations and she told me all of what I just wrote above, and I told her, "if there is anything I can to help, please let me know" She said yes you can help, and she gave me her contact information. I followed up with an email and that's how this got started.

I believe what they want me to do is come with their delegation to the Palo Alto planning commission meetings on this matter and to give a heart felt testimonial of what Packard Hospital has meant to me. That will be easy, and if she wants tears I can easily conjure those up, I'll just bring a power point of picture of Emily's life, and talk about her and the diagnosis and treatment. I think we all deserve a updated hospital rather than a bigger shopping center and a new hotel. Honestly I can't imagine this is an issue. I know what it's like to need it. But Palo Alto probably wants the tax revenue of the new Mall. They also won't allow buildings over 5 floors I believe, and there are some real issues with traffic and the roads that need to be considered, not to mention we're in hard economic times. Those are the real, some some legitimate issues pushing back on the expansion.

I am so excited they want my help, I hope I can help make a change at this level, something that really matters.

All is well

Emily is continues to be doing great with her treatment, and is getting to have a lot of fun. This week our friend Kim called and offered us their tickets to the San Jose Sharks game. Emily had been to a game with me earlier in the season, and she was excited about going to another one. This time though, she wanted Tracy so that's what we did. I watched the game from home so I would be able to talk about it with her. She likes hockey, the games are really fun to go to. San Jose has the best record in the NHL this year. Every year the Sharks sell their season out, and there is so much energy at the games you really are lifted by it, it's quite an experience. Kim also loaned Emily a Sharks jersey to wear to the game, which you can see in the photo above.

On Thursday night I forgot to give Emily her chemo, and Thursdays are 6MP and Methotrexate day, so it was a big miss, but luckily we realized at 5am when Tracy got up with Haley so we were able to give her the dose and not have an effect on the week. We do our best to set alarms on our phones and calendar software but it's so easy to forget even something that important. When I went to bed I remember thinking I needed to give her the pills but was distracted and forgot. Its the first mistake in well over 6 months, which is the good news, normally we've been on time for everything.

Emily's pill schedule. I mention pills but here is the drill. I am going to mention the number of pills not the dosage, just to give an idea of the quantity of pills. On Monday - Friday she takes 1.5 6MP pills 2 hours after eating dinner. On Thursdays she take 7.5 Methotrexate pills. On Saturday and Sunday she take 1 6MP pill, and 2 pills of Bactrim per day. Every 4 weeks she also adds Prednisone to the cocktail for 5 days, taking 4 pills 3 times a day. That repeats itself over and over until she is done with treatment. She also gets 1 IV medication once a month, on the same week she takes the Prednisone. I often think of it as a cocktail treatment like you hear of patients living with HIV.

Emily has a little cold still but overall seems to be healthy. She will have her labs this coming week and that's all we expect to have to do medically.

Wednesday Labs and a few tibits

Emily has her weekly labs today. We were a little worried because she had developed some sniffles recently, and hoped that wouldn't lower her ANC. We got the results tonight and there was nothing to worry about, Emily's labs looked right on track. I don't normally post the results, but for those who are interested these are the main levels we track. Please keep in mind if you go on the web to see what normal levels are, that Emily is on immuno-suppresant therapy so her "good" levels are not "normal. Her White Blood Count (WBC) was 3.6, Hemoglobin 11.1, Plateletes 300,000, and ANC 2600. These are all perfect as far as we are concerned. She will remain on %100 dosage of 6MP this week.

I have been asked a few times during Emily's treatment how common or what is the incidence of NHL T-Cell Lymphoblastic Lymphoma. I finally have an answer from her NP. I didn't realize how rare her disease was. In any given year, between 40 - 50 females between the ages of 5 - 18 are diagnosed with it. That means there are roughly 600 girls in the US who have it and the US has around 300 million people. There are around 400 cases per year in males of the same age range. It's very uncommon to get at all, and very rare for females. However in Africa about %50 of the diagnosis are NHL. Why Emily had to be one of the 45 last year is hard to even fathom or accept. Luckily the treatment for Leukemia works for Lymphoma, because drug companies are not going to invest in a treatment for a disease that effects so few people, that's just the sad truth.

We don't have much planned in the next week and a half, but last night we lined up a ski trip to Tahoe Donner for later in the month. Emily's Oncologist is also a ski addict like myself and he once told me his daughter is his "ski buddy" just like Emily is my "Ski Buddy" We are really looking forward to the trip.

Feb 2

I can't believe it's February already. It has been just shy of 11 months since Emily's diagnosis. It also means we are just 13 months away from treatment being over.

Emily recovered very quickly from her surgery last week. On Friday she even asked if she could go to school because she missed her friends. She was in school less than 24 hours after surgery for which she was heavily sedated. Simply amazing that she was able, and almost more amazing to me that she wanted to go. I am glad she wanted to though, and we had checked it with the surgeons the day before to make sure it would be ok. She only lasted 2 hours, but that was more than enough in my book.

Over the weekend we went on a nice hike, and had a picnic with our friends the Woodmans. They had not seen Emily since just weeks after her diagnosis, when she was very pale, couldn't walk, and was very puffy from the high dose Prednisone. They were not sure what to expect when they showed up, and were in complete amazement at how well Emily was doing. She was running around full of energy just like the Emily they have always known. They were really blown away. Emily did OK on the hike, she got a little bored so she and Katina lagged behind, and Haley actually out hiked all 3 older kids. After the hike we all went to a movie. Emily had so much fun playing with her friend Owen, they have known each other since they were infants, Tracy and Katina were in the same Mommy's group. Above is a picture of Emily and Owen when they were around 3 years old, and then the second one was this past weekend.

This week we have labs, and hopefully that is it. Emily has a scratchy throat but we think it's from the breathing tube in surgery. We finished this months Prednisone yesterday, Emily did well on it this month, only getting a little out of sorts on the last day of the monthly course.