Monday, March 31, 2008

Chemo is off to a great start

Today we got visual confirmation that Emily is responding well to Chemo. The day started off to what I thought was a bad start. Emily's PICC line had clogged up, which means they couldn't draw her blood for labs. No labs then no chemo, and obviously a blocked line isn't great. They have counter measures for the blocked line which they did and took her labs. Next we met with Emily's Oncologist, Dr. Link. He quickly examined Emily, but really just sat and talked with all of us to get to know us a little better. We talked about Emily's treatment, her going back to school, and our shared passion for snow skiing with our daughters. At the end of our talk, he told us that he wanted to take an X-Ray of Emily to see how she was progressing. We were not expecting this and were excited to see what progress had been made.

Before the X-Ray, Emily got her shot. Wednesday will be the last in this current series and the last IM shot for this stage of Chemo. As usual we had to wait an hour after the shot and then it was off to Radiology. We quickly had the X-Ray, and then went and found Dr. Link for the results.

You didn't need to be a Dr. to see that Emily's progress and reaction to Chemo is off to a wonderful start. Dr. Link started off by showing us a couple X-Ray's from when she first came in. Her left lung completely collapsed an chest cavity full of fluid, and then he showed us an x-ray that made us all extremely happy. Two completely clear lungs, with no fluid in the chest cavity, no visible "mass". He showed us on the X-Ray how he could tell there was zero fluid. He saw one small spot that he suspected could be scar tissue from the cancer, but on the Xray she is looking great. He confirmed that we should be happy, she is responding well to the treatment.

This news couldn't have come at a better time. Lately I've been worried that the chemo may not be working. Or I feel bad about all that Emily is having to go through, and it would have been devastating if all that pain and effort and great attitude she has been putting in had been for little progress or less than great results. It will also make it easier for me to go back to work, knowing things are headed in a good direction.

We have known since the beginning that the tumors are very reactive to the drugs, and the real trick is keeping it from coming back. Because he can't see cancer in the X-Ray doesn't by any means say that this battle is over or will be easy. This news was really as expected. At the same time, if you really are going to take this one day at a time, it's important to be happy about a great start, she couldn't be doing better. In about 3 weeks she will get a CAT scan and a full body PET scan to see in more detail how the cancer is reacting to treatment.

After we got home from the hospital, Emily, Tracy, Haley, and I sat out in the back yard. We blew some bubbles, ate some grapes, and then Emily, Tracy, and I played a hand of Uno. The photo on today's post is of Emily playing Uno. (Tracy won the game.)

Sunday, March 30, 2008

Sunday March 30th

Today was a hard day for Emily. She is feeling stomach sick from all the medication she is taking. On weekends they have her on a course of Bactrim, which is a antibiotic. She is taking it as a preventative for infections since her natural defenses are so low. We think it is making her feel extra sick. She is not in pain but just feels yucky. It's hard for her, but she told me "I just have to do what I have to do to get better." We are going to talk with the Doctor's about changing the doses of some of the stomach (zantac) and anti-nausea (zofran) medications. They told us there is more they can do if it gets bad.

Overall we had a very nice weekend. My Brother, Nick, was up for the weekend. Nick, Grandma, and all of us spent most of Saturday together at the house. In the evening Nick and Grandma babysat and Tracy and I actually went out to the Mall ! and then had a drink at Santana Row. It was really nice to be out, just the two of us. I also got away for a 2 hour hike on Saturday with my really good friend Rob.

As much as it can, Chemo is starting to become routine. I have decided that I will go back to work on Tuesday. It will be really hard not to be with Emily and my family every second of the day, but I need to work, it's an important part of keeping things as normal as they can be. Tracy will be taking at least 3 more months off, or if we can swing it, even more.

Tomorrow we are back at the day hospital for some labs and her 8th of 9 shots of L-asparaginase. She is so excited to be almost done with this course of thigh shots. I've got to come up with some sort of creative celebration for her.

Tracy and I also want to thank everyone again for all the help and support, and specifically all the yummy meals, the laundry, the shopping, the child care, gifts, the emails, phone calls, comments on the blog, and just all the prayer and well wishes. We feel so amazed and fortunate that we know all of you and that you care so much for us.

Friday, March 28, 2008

Induction, Day 16

This was taken tonight, just before bed. The steroids she's on make her face puffy, but have you ever seen a more cheerful smile?

Things went smoothly at LPCH today, she got #7 out of 9 shots in the leg ("That actually wasn't too bad," she said afterwards), Haley played at her new friend August's house while the rest of us were at Packard (Haley is feeling much better today, by the way), and Emily ate a big plate of shrimp pad thai for dinner and played the Wii.

But the latest news is that Emily's hair has begun to fall out. I don't mind telling you that I am handling it much worse than Emily is herself. Yesterday she reported that some fell out but neither Chris nor I saw it so we weren't sure how much it was, but just now she was watching TV and playing with her hair and a larger-than-average clump came out. We have been totally prepping her for this. We have been telling her that all of it will fall out and she has taken it in stride in typical Emily fashion. Some kids don't lose it all but we didn't tell her that. We even heard that some people don't lose any of their hair but we didn't tell her that either, although I secretly hoped that she would be one of those lucky few.

The whole losing hair thing was something that Emily could definitely get her mind around when we first told her that she had cancer and it was one thing that really made her sad. She would say that she wished she didn't have cancer and she didn't want her hair to fall out. Tonight when it came out we asked her how she felt and she said she felt scared. She is scared of how people will react at school when she goes back. We had already told her that if anyone teased her, to tell Daddy and Mrs. Spencer, the principal, and they would take care of it. That made her feel better. She also started telling me about how Grandma says that it doesn't matter what you look like on the outside, but that you're beautiful on the inside. I am more than proud of my girl!

A few minutes after she went to bed she called out to me that she had a tummy ache (the chemo makes her have a chronic tummy ache, it seems). I went to check on her and we talked for awhile and then I asked her, "Besides the tummy ache, how do you feel?" She said cheerfully, "Pretty good!" I said, "What kind of feelings do you have right now?" She said, "Excited about making pancakes with you in the morning!" I guess she has her priorities straight. :-)

Thursday, March 27, 2008

Status Quo

Today Mommy is going to post so let's see how that goes! :-)

Emily had a good day today and yes, she did get her Taco Bell nachos with Daddy and she didn't even share. Actually she did share exactly one chip with Haley so that was very sweet of her. Chris's mom, Gail, came over and had lunch with us and had several hours of quality Em-time that they both enjoyed.

Mommy, actually, didn't really participate with the rest of the family since she had been up with Haley in the night and needed to rest! Little Haley was very much a cranky-poo today so we hope she's still just feeling yucky from the ear infection and it's nothing else. If she's not herself by tomorrow then maybe we'll have to take her in to the doctor. Again. Oh, boy.

Tomorrow Em goes to the oncology clinic for a lab draw and yet another chemo shot in her leg. After tomorrow's dose she will have only 2 left so that is something to look forward to. Yippee!

Tonight I was looking over Emily's treatment plan for the next 5-week phase (called consolidation) and I'm afraid it doesn't get any better. In fact, it kind of looks worse! Starting around mid-April, she will need IV chemo for 4 days in a row, 3 days off, 4 on, 3 off, etc. for a total of 24 days. Crap! Boy, when the oncologists said we would know every nook and cranny of LPCH at the end of this, they weren't kidding! At least there are no IM shots during consolidation. We need to follow up on this tomorrow and make sure I am reading this "road map" correctly.

Well, I guess that's it for me. I gotta go to bed. Thank you, thank you, thank you, thank you for all your help...all of you! Every night I love looking at all the comments people have posted and they make me feel really supported and totally positive! I don't know what we would do without all of you. Thanks again. :-)

Wednesday, March 26, 2008

Long Day

First a quick update on Haley. Her ear infection is healing fine, she seems great. Nothing to worry about.

Today was a very long day. We were at Packard for a good 8 hours. It was the first time we've run into a scheduling snafu since we started Chemo. I can understand how it happens. We have to go to the Oncology Clinic, and Stem Cell and Oncology Therapy Lab, and then to the Day Hospital. You would think all three stops would use the same schedule, but you would be wrong. Each does their own schedule and there is no real coordination. So we were not scheduled for labs, but in order for Emily to get Chemo, they need to check her labs. To make a very long story a little shorter, we were supposed to start IV Chemo at 10:30am but it didn't really start until 2:30. A lot of waiting around, and for a little while we were worried we would have to go back on Thursday and our whole Chemo schedule would have changed and been effected. We were lucky that they got a cancellation in the day hospital and worked Emily in. I lost my temper at the Doctor about this, which I regret, but I didn't want a schedule mistake to impact Emily's care.

Besides the scheduling Snafu's things went well. Emily's liver panels are increased, which isn't good, but are not high enough to lower the dose of Chemo. They expect her liver to be working really hard during this phase, so high liver panels on Chemo are expected. Emily had a full exam, and from everything we can tell she is on track. The Dr.'s are great about asking and answering all our questions. On April 10th Emily is going to be getting a Medi-Port, which is a fairly permanent central line. It's a surgical procedure but a fairly standard one. After the port is put in, she will be able to take a bath without any concerns, and swim when it gets warm enough to want to swim. We also wont have to flush the lines daily. (I am so thankful that Tracy flushes PICC lines all the time in her job as a nurse, I would be so scared and to her it is second nature and I know it's being done correctly.) Friday will mark %50 of the way through Induction Phase of Chemo. After that they taper her off the medications, and then do a CAT scan to see what's happened to the tumors. They expect them to be gone after 5 weeks. The trick with Lymphoma is keeping them from coming back. They can tell just from her breathing that the airway to her left lung is much clearer, which probably means the mass is shrinking. She is also not showing signs of distress like what brought us into Urgent care in the first place, that is also a sign that the tumors are probably shrinking.

Emily is on a very high dose of Prednisone, which is a steroid. It makes her appetite increase, and I mean really increase. She asks for food almost all day long. She has lost her sweet tooth, and has an obsession with Taco Bell Nachos. We don't really want her eating a lot of fast food, cancer or no cancer, so we say no when she asks. The obsession is so bad she starts to cry and pulls a complete fit when we say no. For example last night she wouldn't look or talk to me because I said no. (And Emily's normal behavior is not at all like this) I am going to let her indulge tomorrow, in the afternoon I am going to take her to Taco Bell for some nachos.

Tuesday, March 25, 2008

March 25

Today our daughter Haley got an ear infection. I will be honest I was full of anxiety before we had her examined, because of Emily and my last trip to urgent care. Our Doctor knows we are stressed so he gave Haley a full exam and she is healthy otherwise.

Emily is doing well. No hospital or Dr.'s for her today. Tomorrow is another all day Chemo visit to the day hospital.

Updates tomorrow.

Monday, March 24, 2008

March 24

Update on Emily. Today we were back in the day hospital, for a standard Chemo visit. Things went about as smoothly as they could. We had her labs taken and then her thigh injection. The nurse reminded Emily that today's shot marked the half way point through induction phase, so she "only" has 4 more thigh shots to go in this round. Emily had a lot of anxiety before the shot, but actually once the needle was in, I saw her relax, and then it was over. It's sad but I think she is starting to get used to getting a shot. After the shot we have to wait for 1 hour, and Emily did an Art project to fill the time. Emily's spirits are high, and she articulated in her way that she understands what is going on, and that she is happy she has a curable form of Cancer. This afternoon we received the results of her labs, despite two weeks of Chemo her levels look really good, which shows how strong her little body is, and how hard she's going to fight.

For me, it's hard to hear her say those things. I am surprised how aware she is of her situation, and she's just 6 years old. At the same time I am proud of her, given that she understands, that she keeps a positive attitude and is fighting hard. Talk about brave.

Tracy and I are reminding ourselves we need to take it one day at a time. It's hard to remember to do that at times, but we are supporting each other, and when we need it, all of the support we have been getting from you, helps us keep going.

Sunday, March 23, 2008

Happy Easter

We had a great day. In the morning I woke to the sound of Emily excited to find her Easter Basket. And it seemed she was also more excited that there was an Easter basket for her little sister. She was being a cute older sister excited for her younger sister. The Easter Bunny had hidden Eggs in the back yard and the girls found them all. Later in the morning Emily was feeling a little down, but then we all went over to our good friend John and Jessica's for a short visit. Emily had a fun time playing with some other kids and Tracy and I had fun visiting with friends. Haley has come down with a cold, so she is going to spend tonight at Grandma's. Tracy and I are hoping none of us has it either. We'll cross that bridge when and if.

Happy Easter !

Tomorrow it's back to the day hospital.

Friday, March 21, 2008

Good Day

Today was much better than yesterday. Emily was feeling pretty well and had her spirits up. This afternoon she even requested on her own, that her teacher bring her some homework so "she can get caught up". I think it's a pretty good sign when a kid WANTS to do homework. Is she really related to me? :-) We went to Packard for a shot and to remove her dressing where the chest tube was. She has completely healed where the chest tube was inserted. It's nice to see that even in Chemo her body is healing itself.

Today I ran into a high school mate of mine who was there at the hospital delivering his first child. He and I went up and looked at her, she was so cute. That put a big smile on my face. Tracy also feels much better than yesterday which was a tough one.

Emily doesn't have to be back to the hospital until Monday. Having 2 days off is the longest rest she has had since this all started. We aren't sure what we are going to do, but we are happy to have some days off from that place.

(Unless there is something significant to report, I do not plan to make a blog entry tomorrow. I need a day off from it. But Easter I will be back with an update on our day.)

Thursday, March 20, 2008


Today was a tough day. The effects of the Chemo are starting to be seen in Emily. It's very hard to observe and I have no idea how hard it must be for Emily. She has really bad leg pain. In the hospital she likes the wheel chair, at home she limps around. This is a very common and reversible side effect of one of the Chemo drugs. She is also has an upset stomach and a pale look to her. There fewer smiles from her today. That said she still managed to have some fun today and Tracy and I are constantly consoling her and making sure there is nothing more we can do for her.

Today was tough but I am trying to prepare myself for more, and actually worse days ahead. Most of us know this, but for those who don't, they basically have to poison Emily to a point where she is very sick, and they have to completely take down her T Cells, or immune system. She is at risk during this time so you won't be seeing us out in public much. Tracy and I have to try to stay away from colds too because if we get them we can't care for Emily as well.

I am really trying to prepare myself for her to loose her hair, I saw many bald children in the day hospital yesterday. It's so sad what all these kids endure. And on top of it all they have to loose their hair.

Tomorrow we will be back at the hospital for another Chemo injection. They aren't going to need to put her under tomorrow, so she's going to feel this one.

Wednesday, March 19, 2008

March 19th

Today was a very very long day. Emily had to have many procedures, including a Intrathecal injection (Spinal) which she had to be put under for. We asked the Doctors to also give her, her shots while she was under, which they did. Then we went to the day hospital and got 2 more Chemo drugs via IV. We had a scare at the end of the day as her rate rate spiked again, but luckily all that was needed was some fluid's via IV. We started the appointment at 10:30 this morning and didn't get home until 7:45. LONG day.

We met with several of Emily's Oncology team today and went over her labs. As we would expect her levels are starting to drop, but Dr. Dahl said she was looking really good and really strong. We can tell by the Doctors smiles and reassurance that Emily is really doing well. He told us that if Tracy and I want he can do an Xray next week to verify we are making progress, but he is so confident that she is by her labs and the way she looks that he doesnt think he needs to until we are done with the 5 week induction period.

Everyone, including Tracy and I, are impressed that through all this Emily has a smile on her face and is taking each challenge like a real champ. I will be honest, it's her smile that sometime keeps Tracy and I going. Emily was really brave today we are just so impressed and in awe of her courage.

Tomorrow is a rest day and we are looking forward to it. Grannie Carol is going to watch the girl and Tracy and I are going to go out to lunch together.

Thanks for all the well wishes and support. I'll never stop thanking you all for this, I can't explain how much it means.

Tuesday, March 18, 2008

March 18

I am only going to post a quick one tonight. Nothing really new to report. Tomorrow we will be at the hospital 10am - 5 for chemo and other tests.

Today Emily spent the day just having fun at home. She and I went on a walk to Starbucks. then we came home and set up her new Nintendo Wii and played some games. Then her Grannie and Grandpa came over to hang out with Emily and help Tracy and I with the million things we need to do.

I will update tomorrow night with details of our first outpatient Chemo visit.

Monday, March 17, 2008

We are home

We are home and we are all glad to be here. That's probably the understatement of the year. Emily's spirits are high and she's in a fantastic mood. Seeing her this happy is such a relief and Tracy and I are enjoying every minute of it.

By the way if you would like to sign up to bring us meals, here is a link, please sign up for a day to help us. We will be adding child care to this tomorrow. Here is the link. If you need help Erik's email is posted there for assistance.

SOME PEOPLE ARE EMAILING ME THAT THEY CAN'T LOG INTO QUICKBASE. HOWEVER MANY PEOPLE HAVE BEEN ABLE TO SO I KNOW IT's WORKING. IF YOU ARE HAVING TROUBLE (and you aren't an Intuit employee :-) Email Erik Hansen at erik"@"hanseniumDOTcom. He can either walk you through setting it up, or can just enter a date you'd like to bring food an handle it over the phone. However we'd REALLY like you to use Quickbase because then we can plan ahead etc. This will be the place to go everytime we are in the hospital. I can see now that we are home we are going to need even more help, no more nurse button. Nurse Tracy and Nurse Chris have it now.

Wednesday Emily will be back in the hospital all day for a Lumbar puncture which she needs to be put under for. So, we will enjoy our hospital free Tuesday and then we back for another round at Packard.

Before Emily was released today they did another Echo cardio gram, and that nasty shot into her thigh muscle. Tracy and I were trained on how to flush her PICC line and some other stuff. Mainly we have to keep her away from anyone who is sick, because every time she gets a fever we will be back in the hospital for a stay. There are a whole bunch of other details, I'll spare you most of them.

For me, going home wasn't quite as exciting as I imagined. I didn't realize that home medical supply people will be stopping by to deliver products and change her dressings. To me it feels like she's still sorta in the hospital she just doesn't need a IV. I guess what I am saying it's not like we are home just waiting for Emily to just get better. But at least the acute trauma phase is over for now, and we can enjoy ever last second of our little hero.

Sunday, March 16, 2008


Since we had a great day I wanted to quickly just post again on the blog, a big thanks to EVERYONE so far. All the emails, calls, well wishes, prayers, meals, baby sitting, laundry, being there to vent to etc, has meant so much to Tracy, myself and our entire family. We also have read every comment on this blog at least once. Things you may think are trivial mean so much in situations like this.

My good friend Erik Hansen has created a cool way you all can sign up to help even more, mainly we are going to need meals and child care for Haley for a couple weeks here while we get used to being at home, and we want to have something in place so we can quickly activate our support network when we need it in the future, something that is very likely to happen. It is setup with email notifications so you will hear from us when we have a request. Erik, Tracy and I have to go over the details tomorrow and then we will post the URL here and actually email it out to everyone. It's made with a product that my company Intuit makes called QuickBase, not that it matters, but I know how it works really well and am excited Erik has made this it will be really helpful. You aren't going to need to sign up for anything you need to pay for or anything, don't worry.

And even though Emily is going home tomorrow, we still have a two year battle ahead of us, with many unforeseen challenges that lie ahead. We are going to have days like this where we can be really happy, and then face a challenges the next day and the mood of the blog may quickly change. It's really helpful to me to document all of this. We aren't naive about what's going on, and I want to give you all a head's up about that too. The Doctor's have warned us that while the prognosis is very hopeful, that battle along the way will have it's tough days.

One last thing and I hope everyone of child bearing age reads this. When you are given the option to bank your core stem cells from the umbilical cord when you deliver your children, do it. Yeah it costs a few thousand bucks to bank it, and I'm not trivializing that amount, but if you ever end up here where Tracy and I are, you will wish you did it, we wish we had. I have learned over this past week, you can't get down about things you can't control, but if we all can learn from this, I'd consider banking your stem cells when you have children going forward. And if you have banked your stem cells, and have wanted to know if it was worth it, it WAS. Tracy and I never thought in our wildest dreams we'd need them and odds said we didn't, but odds get thrown out the window when it's your baby, we all get that. I don't want this blog to get political in any way so let's not comment on stem cell research, you can hit me up in email if you want to get into that.

Tomorrow's post will be late with the plan to have a photo of my little warrior in her own home, back with her sister and Mom and Dad.


We got some great news today. While we were advised the hospital stay could be 3 weeks, we were told this morning she is reacting so well that she is going to be released TOMORROW!! That's even shorter than a week from her starting chemo. To put this news in perspective, when we were told her official diagnosis, they said if everything went perfectly she could possibly be out in a week. This is even sooner than that, she's just fighting this super hard!

Yesterday after they removed her chest tube, they took an X-Ray, and over night they took a look at the film on some high resolution large screen thingy, and noticed significant reduction in her tumors. And since her labs look good also, there is no reason to keep here her after tomorrow.

She does need to get another nasty shot in her thigh Monday and then recover from the pain medication, and then we are OUT of here. We have already started to be discharged ! The Dr. let it slip to her in her exam today so Emily is really happy. (I can also personally prep myself for tomorrow's shot, since yesterday was so tough on me.)

Emily will then we in here weekly for 9 weeks (something like that) for an all day out-patient chemo treatment, which includes being "put under" for a spinal/Lumbar puncture.

Tracy, Emily and I are so excited about tomorrow. I can also say Tracy and I are getting more and more confident that our lives will get back to something closer to "normal".

Saturday, March 15, 2008

March 15

Today was a roller coaster of emotions for us. The day started off great. We got the news that the chest tube was going to be removed. That's a big step. Then Emily was visited by her friend Gray Tynefield. The picture today is Emily and Grey working on and perfecting Emily's Leprechaun trap. Emily is hoping to catch a few Leprechaun's this St. Patty's Day.

This afternoon was more difficult. Emily had to have the procedure to remove the chest tube, and she also had to get a shot in her thigh muscle, which is very painful. She was first given a double dose of Morphine, with some Ativan (sedative), and some Benadryl to make her drowsy and out of it, so they could give her this painful shot. I am sure the medication helped but Emily was crying and in a lot of pain after.

For some reason, after all that the nurse suggested that Tracy and I take Emily out of her room in a wheel chair. The Oncologist signed off that Emily could leave without her monitors for an hour, so I pushed the wheel chair while Tracy dragged along the IV pole with Emily's cocktail of IV drugs. I have to say this is a VERY hard thing to do, walking by a window, seeing a nice Saturday and the realization of how messed up this all is. Emily was bawling and then said "I can't believe this is all happening to me." At that point I lost it and started crying. I held my tears as much as possible for Emily. I could tell Emily had come to a deeper understanding of what is going on. I feel so powerless and I want to make her better and I can't.

The day ended on a happier note with a visit from her classmate Anna.

I know I need to be prepared for days like these, and I got through it. I am happy for the happy parts of the day.

By the way if you visit, and CAN NOT say the word "Home". If you do, Emily will start to cry instantly, she really wants to be home. And we want her home so bad I am not a good enough writer to express it.

Friday, March 14, 2008

March 14th

Today was truly great day. Emily only had to have one procedure done on her, an EKG to check the fluid build up around her heart. Then we got some good news, it looks like the fluid around the heart is starting to recede, so much that they don't feel they need to do another EKG until next week. They also have noticed significant action in her collapsed lung, meaning it is starting to really expand. We are hopeful that the chest tube will be removed soon. One of our biggest struggles is the oral medicine Emily needs to take, but she is getting better at taking it without a fight.

Emily is noticalby more comfortable, which makes all of us much less tense. This afternoon Emily had a visit from her good friends Olivia Scott and Katie Hammond. The girls were having fun adjusting Emily's hospital bed, watching movies, and talking. There was a lot of laughter and fun going on in the room and Emily was TOTALLY distracted from all the crap she's having to deal with.

Later in the afternoon Emily had a special visit from her Teacher Mrs. Smith, along with her school Principal and one of her favorite substitute teachers. It meant so much to Emily to know that everyone at Country Lane is thinking of her.

This evening my Mom watched Emily here in the hospital while Tracy and I went out to dinner alone for the first time in 6 days. It was nice to do something "normal" as a couple, and to know both our girls were in good hands.

Thursday, March 13, 2008

March 13th

Today was a great day. Emily's heart rate is down at a very nice rate. She hasn't had to take any pain medication all day. And she was able to get out of bed. They did a follow up Echo on her heart to check the fluid around it. It's still there no change there.

Today we also told Emily she has Lymphoma. It was a hard discussion, but they have age appropriate visual aids to help explain. She was most upset when we told her that she is going to loose her hair for a while. I think it's just setting in and she will talk more about it over the next few days.

Chemo continues, Emily isn't a fan of the oral medications, but many can also be given in her PICC line (IV).

We continue to receive so much support from our friends and family. I am sure we have not had to think about food, we have more than we know what to do with. And all the stories people are sharing about beating Cancer really helps Tracy and I have the energy to hang in there. We again want to thank everyone, you really don't know how helpful it is.

Background Info

If you are reading this blog you have probably heard that Emily is very sick. She has been diagnosed with T Cell Lymphoma. I will explain more about that in a bit but first let me explain how we found this and what's been happening the past few days.

Emily had an ear infection last week, but we noticed that her fever was not going away. On Sunday I decided to take Emily into urgent care because she was starting to have trouble breathing. We got to the appointment and the Dr. thought it would be a good idea to have a chest X-Ray. I was standing by the X ray tech, and he almost shot out of his seat when he saw Emily's film. He rushed us back to the Dr. The Dr. told me that Emily had a completely collapsed lung and they couldn't understand how she was even up and walking around. They were so worried that she would slip at anytime that they called an Ambulance to take Emily from Palo Alto Clinic to the ER at Stanford Hospital. For those who don't know Palo Alto clinic is less than a mile from the hospital and they were worried that if I drove her she was going to slip then. This was a "code 3" meaning the sirens were on and everything. I also had Haley with me, so I could not ride in the Ambulance, Emily had to go alone. Luckily Tracy was at the hospital for work, so she was able to be there waiting for Emily to arrive.

So at this point we are thinking this is bad, she has a collapsed lung. But unfortunately our nightmare hadn't even begun.

They did several more X rays and exam-ed. Then they told us that whatever was in the lung was not "layering". When you have fluid in your lungs and you lay on your side you would see the liquid layer on the bottom due to gravity. So at this point the Dr.'s knew this wasn't liquid, it was probably a mass. At this point Tracy and I knew that we were dealing with something extremely urgent. They brought Emily in for a CAT scan. The result of the CAT scan was a mass around the size of a apple in her medial stinal cavity. The Medial stinal cavity is your chest, where the heart, lungs and thymus gland live.

Then we were told that the Dr.'s agreed that Emily needed to be admitted to the Pediatric Oncology Ward, and they handed us a box of Kleenex because as you can image we were totally devastated that our little angel probably had Cancer. She definitely had a mass in her chest.

The next 48 hour were extremely difficult. Emily needed surgery immediately to drain her chest, have a sinal tap, and get some bone marrow and a piece of bone. The real tricky art was since the mass had dislodged her trachea she could not be put under anesthesia for these very very painful procedures. She also got a chest tube. To put a chest tube in the put a hose in between on of her ribs and it goes into the medial stinal cavity. She drained out 1400 militers of fluid from that cavity. To give you a visual, that's about a bottle and a half of wine. Emily cavity is REALY small. So her right lung was completely crushed and non functioning. Her heart rate was up around 155 for 2 days in a row, she was breathing very rapidly. It was just scary and horrible for everyone. And we still didn't even know what she had.

The next day, Tuesday March 11th, all the tests were done and a team of oncologists had a diagnosis and had a meeting with Tracy and I. There were two doctors, a social worker, and boxes of Kleenex present. I was prepared for bad news.

They told us Emily had T Cell Lymphoma. This was really difficult news to get. They explained to us that T Cell Lymphoma is treated just the same was they treat Leukemia. The two diseases are very closely related, Leukemia originates in the marrow and T Cell Lymphoma originates in the Lymph nodes. In fact they treat Lymphoma because it can move into the marrow and become leukemia.

We were told the current survival rate for Pediatric T Cell Lymphoma is %75. I don't know how you take those odds, but when you have a kid with cancer, that's a good number, there is a lot to hope for. We have an exellent team of Oncologists on the case.

WE had to listen to the two years of treatment in a lot of detail so we could sign consent to begin treatment.

Yesterday March 12, Emily started her 2 years of Chemotherapy. It started off with a Lumbar Puncture to inject her spine with medicine. Luckily by now she could be put under for that procedure. One she will be having once a week for a long time. 5 other drugs were administered as well to start the fight. The FIGHT IS ON.

When they exam ed her heart they observed a fluid build up around it, and we're watching that closely as well, but things seem to be progressing well. Her heart rate has returned to a normal rate for a 6 year old, her fever broke, and she was being feisty. It was nice to see.

One of the odd side effects of her medication is she has pink tears, so if you visit and see them, don't fret its expected.

Emily has a play therapist assigned to her, who plays with her, and arranges other fun things. For example yesterday Theater Works from Mountain View came around with a puppet show in her room, and today she got a visit by a dog. When she gets her chest tube out there is a play room upstairs that is very nice. All the child cancer, and cardiac, and transplant patients play and go to school up there. Emily could be in the hospital this stay as long as 5 week so it is nice that there is a lot for her to do here.