Friday

Today Emily had to have a transfusion. Her labs went down from Tuesday. I thought she would have snapped right back like she did the last time she had a break from chemo. Her hemoglobin was way too low so they transfused her. She got to go to the "Swiss Cheese Room" for her transfusion. The Swiss Cheese room gets its name because a couple of the yellow walls have holes in them. In the Swiss Cheese Room, which is officially the Oncology Infusion room, the kids can use bean bag chairs, borrow a portable DVD player and watch a movie while they get their blood products. It's in the new Bass Center at Stanford, the new Pediatric Oncology in-patient ward. Tracy said it didn't quite have that same hospital feel.

Next week she will have the CT scan on Monday, and then Dr. Link will go over the results with us next Wednesday. We all hope you have a great weekend.

I am not going to make good on my promise of a video for Emily; I'll get to that over the weekend when I will have more time.

PET/CT Scan canceled

We got an email this morning from Emily's NP. After we left the clinic yesterday, Dr. Link thought Emily looks so good, that he has canceled the PET scan that Emily was going to take at the end of Phase 2. Because she is looking so good and made it through Phase 2 without any complications, he doesn't think he needs to see a PET scan. Of course this is good news, Dr. Link has been treating Lymphoma patients for over 30 years, and that he feels she doesn't need the scan has to be considered good news. She will still have a CT scan, and if there are concerns, then they will re-order the PET scan. They want to reduce her radiation exposure as much as possible, so unless something changes she will only get 1 every 6 months while in Chemo.

Tomorrow I promise a video of Emily, you all need to see how well she is doing.

Phase 2 Complete

Last night Emily took her last medication for Phase 2. It's over. Today she had her physical exam and we reminded her Doctor and our NP that Emily had managed to stay out of the hospital during phase 2. They were surprised themselves when they realized this. You will remember that when she started Phase 2, her doctor told us numerous times to be prepared to be hospitalized. We can all see that didn't happen. Dr. Link said that it does happen sometimes, kids with Lymphoma that haven't progressed to Leukemia sometimes have enough energy to keep them out of the hospital. Her lab results from yesterday show that she is still very low in all blood counts. Her hemoglobin was 7.7, so she has an appointment for another transfusion this Friday if the level doesn't rise above 8. Her ANC was also low at 150.

If you visited our house and you didn't know who was on Chemo and you had to guess who was anemic, honestly I don't think you would guess Emily, she really has more energy than Tracy or I do, combined.

Phase 3 will start when Emily's blood levels reach certain criteria, most likely in a week or maybe two. My guess is that she will rebound quickly and we will start phase 3 soon. I posted some incorrect information a few times about Phase 3. I thought she was going to be hospitalized 4 times, just for 24 hours each stay. Today we leaned that each hospitalization will be 3 to 4 days. We will start off Phase 3 with one of these hospitalizations, I will keep everyone posted once we know the date. It is much easier to know about a hospital stay so we can prepare ourselves, unlike when she was diagnosed.

We also don't know which hospital she will be in yet. Packard has an agreement with El Camino hospital in Mountain View, CA. When they fill up at Stanford med center, they send otherwise healthy chemo patients to El Camino. Each day the Oncology department has a "A and B team" The A team does rounds at Stanford, and the B team goes over and does rounds at El Camino. Members of the A and B team switch so all the doctors and staff see people at both sites. It's good if you are sent to El Camino it means they need you in the hospital but don't think you will need to be at the main treatment center. El Camino was recently remodeled and as a result of the HIPPA laws, every room is private, which would also be nice. Sadly there are so many kids with cancer being treated at Packard, beds are very scarce.

Allison donates to Locks of Love

Above are before and after pictures of Allie, the child of life-long friends, as she donated her hair to Locks of Love in Emily's honor. Soon after she learned of Emily's diagnosis, Allie made it a goal to donate her hair. On her 10th birthday she went through with it and had her hair cut to donate 10 inches in honor of Emily. It takes 6 donations to actually make a wig, so Allie's hair will be included in a wig that will go to a child with cancer to help them have a normal life coping with their chemo. We want to thank Allie for her support and her giving spirit. I know this experience has made me think much more about giving and about people who need support. It's really inspirational to see a 10-year-old who already gets it. Thanks, Allie, from the Peppers!

If you are interested in donating hair there are several organizations such as Locks of Love. If you are like me and you don't have hair to donate :-) there are a lot of other great organizations and ways to get involved such as the Make-a-Wish Foundation and the Leukemia & Lymphoma Society to name just a few.

Emily continues to do very well. She is active, and almost %100 of the neuropathy is gone, meaning her gait is back to normal and she is no longer limping. Her lab levels are low but that's to be expected in this phase of chemo. Tonight is her last pill of Phase 2 and then it is a break and on to phase 3.

Almost done with phase 2

Yesterday Emily had her last dose of IV Chemo in phase 2 of treatment. She still has two more nights of taking a pill called "6MP" to complete Phase 2. After that, her doctor will monitor her labs, and when her blood levels reach certain criteria, she will start Phase 3. They told us some kids take 1 to 2 weeks in between phases.

Emily is feeling really great. She is doing pretty much everything she did before she was diagnosed. She continues to lose hair, but she still has some. This weekend we don't have anything planned and have been taking it easy. This morning Emily and I went and played another round of mini golf, and then did some shopping. The weather here is pretty cold so this afternoon she is watching a movie with Tracy. Sitting here looking at her, as I write this, it's hard to believe that a few weeks ago she was so sick and unable to move around. I am afraid to get too excited about how well she seems to be doing; besides the hair, she seems so normal and healthy.

Upcoming for treatment this week, is labs Tuesday and Friday, with a physical exam on Wednesday. Another very light week.

Emily and Rita

Not much to report today. Here is a picture of Emily and Rita. Rita is one of the dogs that visits kids in the hospital. also for you SF Giants fans, Rita was the first non pure breed to shag baseballs in McCovey Cove at ATT Park. She shagged a few of Barry Bonds record breaking home runs. This was taken as Emily was getting a blood transfusion last Friday.

ANC at 0

Emily had her labs yesterday and her ANC level is zero. She has no ability to fight off anything she might be exposed to. We are keeping her home from school to be careful. This afternoon she went to a Lisa's Tea Treasures with a friend. Overall she has been doing really well. She has been active and in a good mood. This evening she has been throwing up; we resumed IV chemo today.

Her appointment with the NP today went well, and she will get her labs drawn Friday. I drove her to the hospital today while Tracy dropped Haley off at our friend Dara's. When we got to the hospital Emily took the lead, like she owned the place. She told me where to sign in, where to get my parking pass, and the quickest route to the Oncology Clinic (of course I've done these things a million times already). When we got to the Oncology Clinic she insisted on opening the door for me, and told me how to check in. "Just say Emily Pepper, that's it." Given that she has to be there, it's nice to see such confidence about what's going on and what she has to do. She will be done with the second phase of chemo next week.

Housekeeping

Today Emily attended school by herself for a couple hours. It went well, but after I delivered her back at school after lunch at home, she got cold feet and wanted to go home. I wasn't able to stay with her as I had a certain very disruptive, "busy" 20-month-old with me. Emily said that she got so used to being at home with me that she gets nervous about being at school again. So the fact that she got 1 1/2 hours in is great.

Emily has suddenly decided that she likes scrubbing toilets. Throughout the day I hear requests for things such as gum or candy, with the occasional request to scrub the toilet. She also likes to spray and wipe whatever I will let her. The other day she sat in the middle of the kitchen floor with a rag and a bucket of soapy water and wiped the floor around her. I reminded her not to forget to clean the areas under the cabinets, etc., and she responded, "Cinderella never did that." I guess I'm glad she's not pouring an entire bucket of soapy water on the floor and using scrub brushes like skates a la Pippi Longstocking.

Emily still feels very good and tomorrow we'll get a lab draw done through her port to check on her counts. I still think it's amazing how this kid walks around and you can hardly guess she's so sick.

Having fun

The weather this weekend has been fantastic. The heat wave we had mid week has cooled down to the mid to upper 80's. Yesterday morning Emily and I went and played a round of miniature golf. We had a really good time. I haven't taken Emily in about a year and she has become good enough that I think we will start keeping score next time. She got a legitimate hole in 1 ! She did really well on the rest of course making most holes in around 3 shots. After golf we made tuna sandwiches for lunch. After lunch I took Haley to the local park and Emily and Tracy had some alone time. Emily got her at-home IV Chemo, and then Tracy deaccessed Emily's port. (That means she took out the needle and tubes attached to her). Then Tracy and Emily went swimming. Emily had been looking forward to swimming for two reasons. One reason is that it's been hot. The other reason is just because she can, they keep telling her in the clinic "One of the advantages of a port is that you can go swimming," and I think Emily just needed to check that out. As she left she told me in a somewhat serious tone,"Daddy this is the freedom of a port, I can go swimming." They were gone swimming for around 3 hours.

One the way home Emily called and requested sloppy joes for dinner. I made her the request. When Emily is in this phase her tummy doesn't feel well so anything we can get her to eat is good. Often she craves the ideas of certain foods but when she actually sits down to eat her request, shes doesn't want it. I thought this would be the case for the sloppy joes, but she actually ate a whole one. After all the activity she had worked up a real appetite.

Today we are going to take it easy. Em and I have talked about going to Santana Row, an out door shopping mall to walk around. They have some nice outdoor seating in the shade and we may go over and hang out there for a while, but for the most part take it easy.

This coming week should be easy as far as Chemo is concerned. All Chemo can be given at home and Emily only has to go to the hospital twice for lab draws. This week is also the last course of Chemo in Phase 2, we are looking at Phase 3, called Intermediate Maintenance coming up. In between phases she is going to have a PET scan again to see if we are still in remission. Intermediate Maintenance is a 9 week phase, while the past two have been 5 week phases. It is possible that during that 9 week time we can go up to Tahoe and we are tentatively planning to spend the 4th of July in Auburn, where Tracy's Mom and Dad live. I was surprised to find out that Truckee Hospital has a cancer center, I called them and if there were an emergency they have all the necessary equipment to treat Emily, so we are hoping to get up there this summer. I used to spend a month every summer in Tahoe so it's a really special place for me, and I have always wanted it to be a special place for my kids.

Friday

Today Emily had her ultra sound, and unfortunately the blood clot is still there. I was really surprised and disappointed to find that out. It is smaller so some progress has been made, I am unclear on how much progress as I don't have that much info from the Hematologist so I will follow up on Monday. She will continue on her Lovenox therapy but they have lowered the dose, because it might start to interfere with her chemotherapy. There will also be days when her blood counts are low that we can't even give her the therapy at all. Emily is happy that she only needs one shot per day, and I guess that's something to get excited about. This illustrates one of the things that is hard about being a parent of a sick child. It is nice they are not aware of their risks and how sick they are, but as a parent you do know, and have to put on a good face to your child.

She is also neutropenic again, which we'd expect to see in this phase of chemo now that we have resumed therapy.

The following was dictated by Emily.

"I am feeling great today. I had an ultra sound and a blood draw. My Mommy picked up saline flushes and gloves. This weekend I am going to go swimming because my port will be de-accessed. I am going to go swimming at a pool on my Grandma's road because I can't swim in a public pool but I can swim in my Grandma's neighbors pool. I am done, goodbye."

Marathon

Today started off at 5am, getting up and going to the hospital for Emily's full day of procedures. It was a long day, but everything went very smoothly schedule wise. She was prepped to be put under for her Lumbar puncture and the procedure was underway by 7:30am. We walked with her and the anesthesiologist to the procedure room and were there as they put her under. The procedure itself lasted around 15 minutes and she was brought to the recovery room. We were done so early the recovery room was nearly empty, usually it is full of kids recovering from various surgeries, it's definitely not one of my favorite places. In the recovery room they started her IV hydration and sent us to the Day Hospital. We were really happy to have Nurse Mary, one of our favorites, she's been working in the day hospital for 27 years, she pretty much runs the place. She also really likes Emily. Emily was hydrated enough to start the Cytoxin at about 10:30am. Cytoxin takes about 30 minutes to infuse. In the middle of the Cytoxin Emily's nose started to feel "hot" which is a side effect. It didn't bother her that much and the sensation went away after 15 minutes. After the IV Cytoxin was in, she was given Zofran for nausea. Cytoxin is the drug I mentioned 3 weeks ago, that usually makes people very stomach sick. It didn't for Emily last time, but that may be because Tracy and I are on top of the Zofran and Ativan, which are both effective for nausea, and Emily seems to handle it well. After you get Cytoxin, you have to get 4 hours of IV Hydration. They actually pump the saline in her for 4 hours at a fairly high rate, so the medication moves through her system quick. After all that, she was given her IV Cyterabine dose.

Then came the Doctors, who wanted to exam her, as they always do. They continue to be happy with Emily's progress. Emily had her exam with Dr. Link, her Oncologist, but Emily also asked if Dr. Dahl was there. Our NP, Karolina, went and told Dr. Dahl that Emily had mentioned him, and he came over and sat with us for about 15 minutes and talked with Emily. He also checked in to see how Tracy and I were coping with "all this". It was so impressive that he made time to just chat with us, we aren't even his patient officially. Dr. Dahl has a very good reputation in the Oncology field, and that he has taken an interest in Emily makes me feel even better about the care we are getting. That is to take nothing away from Dr. Link we feel very lucky to have him.

What's next? On Friday we have an Ultrasound to determine if the blood clot is gone. Obviously we hope it is, but we also really need it to be, as Emily's platelets are getting low, as I mentioned in last night's post. Her Hematologist is hopeful it will have resolved. We have 3 weeks of the Consolidation phase left.

Emily has expressed interest in writing a post on the Blog, so look for that soon. I may even video tape her and post the video so you can all see how well she is doing. She is also starting to read the comments more often.

Tuesday's Update

Today Emily had her labs drawn, and her ANC levels were over 1000 so she can resume Chemo. Her hemoglobin was so low she is getting a transfusion this afternoon so she has more energy and strength for tomorrow. She still seems to be feeling good, but the labs indicated a transfusion.

Tomorrow we'll be checking in for the procedure at 7:30am. She'll be put under for her Lumbar puncture. Next she will be hydrated via IV, and then given Cytoxin in her IV. After that we have to wait 3 hours while she gets more IV hydration. She will also be getting her Cyterabine and starting her daily Chemo pill.

There is a future complication that they are starting to monitor. Her platelets are also getting low, and this phase of chemo should lower them more. Her blood thinner may not be indicated if this happens, so I am not sure what we would do about the clot. I hope it's gone and we don't have this worry. I am trying to get her in for an ultra sound before Friday when it is scheduled, in hopes we can D.C (discontinue) the Lovenox therapy.

We are now 2 months into Chemo, it feels so much longer and I don't know how I will make it through another 22 months of this, but I will. I know Tracy feels the same. thanks everyone for the continues support.

Plans for the week.

We had a great weekend. Emily and Haley played in the backyard in the sprinklers both Saturday and Sunday. On Sunday morning Emily, Haley and I got up early and made Tracy breakfast in bed to start off her Mother's Day. Emily joined her in bed to eat, and I wheeled Haley's high chair in the bedroom to join in the fun. I was the "waiter" getting additional drinks, napkins etc. It sounded like the girls had a fun time. Haley and Emily gave Tracy a couple Mother's Day cards, one made by Emily, one we bought. We also had some small gifts for Tracy. About a month ago it donned on me that Mother's Day was coming up, and I prayed that Emily would be healthy and happy and that we would all be home together. My prayers were definitely answered. I was also very thankful that my Mother was here this year, given her recent emergency heart surgery. For dinner, my Mom, my Brother, and the Pepper's all had dinner together at our house. After dinner we were all treated to a "Dance Show" that Emily had been preparing for all weekend. I am still floored that Emily has so much energy and is able to stay so happy and positive.

This week we are expecting to resume Chemo. Emily will get her labs tomorrow and that will determine if we do start up again. If we do she will put under for a lumbar puncture on Wednesday morning. Then she will get a IV treatment of Cytoxin. And we will give her the Cyterabine and Mercapurtine (sp?) here at home. Even though Emily will probably get sicker again because she's back on the Chemo, I am happy to proceed with treatment. On Friday Emily will be having an Ultrasound and appointment with her Hematologist to determine if the blood clot has completely resolved itself.

Update on labs and chemo

Emily's neutrophil count is rising nicely. She is at 568 today, and I would guess they will decide to resume Chemo next week though we haven't been told that yet. Tracy thinks she needs 750 or higher in ANC to resume. So right now Emily is "only" on blood thinner, Zantac, and septra. She will be taking Septra (antibiotic) every weekend for the next two years.

What has Emily been up to? A lot. This week she did some home school, had a visit from her Grandparents, went to school, went to her Brownie meeting, went to a play date in the park, went to the park with Haley and Tracy (They walked to and from as well.) Right now she is over at her school attending a performance the first graders are doing. She wants to be there to support her class. All around she is pretty active and feeling good. Macaroni and Cheese, specifically Annie's Mac n Cheese has returned as her favorite food. She didn't want it at all while on Prednisone, but ate it for breakfast, lunch, and dinner yesterday. We are happy she is eating at all. I think the break from the Chemo has made her appetite come back.

Emily got her wig from the Lymphoma society this week. It's made of real hair and came with some shampoo to wash it and keep it clean. It's a darker blond than Emily is, so to me she looks really different when she is wearing it. She likes it a lot because it is long, and she really likes long hair.

I am not sure if I will post again this weekend, assume no news is good news and have a wonderful weekend whatever you have planned.

On hold

Emily's ANC level today was 298 which was too low to continue with chemo tomorrow, so she will likely be delayed a week. We have discontinued all chemo medication until her levels get higher. I am not sure of the threshold they are looking for, but I would guess 500. Her next check will be on Friday.

ANC in the 250's

The lab results from Saturday came back just after I posted. The main news from them is Emily's ANC (Absolute Neutrophil Count) is 258. That's very low and what we expected to happen in Phase 2 of Chemo. To put some perspective her ANC 2 weeks ago was 2600, then last week 1100, and then down to 258. Normal is anything above 1500 per micro-liter. ANC levels determine your bodies ability to fight infection. That's why the doctor warned us about the possibility of hospitalization. So far Emily has not come down with a fever. She is due to get labs tomorrow which will determine if we can give another dose of Chemo this Wednesday.

How is Emily doing? You wouldn't know by looking at her that she is Neotropenic and Anemic. She is acting a lot like the Emily Tracy and I remember. In fact I even caught myself saying, "Emiy, please don't climb in the couch, the family room is not a play ground." She also had a two hour play date this weekend and didn't want it to end. There are times where I am finding myself "forgetting" she has cancer, which is great. I know she's going to have her ups and downs, this has been a nice stretch of "up" which I wish could just last for the two remaining years. I'm really hoping it lasts through next weekend, which is Mother's Day. Emily and I have been preparing some fun and I hope she is well enough for us to execute our plan.

We have been asked what is Tracy doing about work? Originally she took a 3 month leave. We are already 2 months through that. We realize that she needs to be here pretty much all the time since we can't guess how Emily is going to be feeling, plus summer vacation is almost here and Emily will need someone with her daily. To that, we are trying to figure how to do it. We can make it, just not the lifestyle we are used to, not a big deal. Tracy is also going to look into working 2 days a month to keep her nursing skills up.

My next post will be after we get the lab results tomorrow, which will dictate the game plan for the next couple weeks.

Update for the weekend

Today Emily had to go to the clinic for labs to be drawn. We don't have the results yet but expect her levels to continue to drop. Other than that, we are just having a normal weekend. My brother is in town and he and my Mom are going to come over for dinner tonight.

Emily continues to walk more and more everyday. She isn't using the stroller at all. I did 5 days in a row at work, which is a first since this all started. She is doing a lot of things she hasn't done since she was diagnosed. I am going to take next Wednesday off since Emily will be put under and I always want/need to be there then. I never talk about Haley here, but she just turned 20 months, and is a total cute handful. She is learning new words every day. She knows Emily is sick, we teach our kids baby sign language and one of the signs Haley knows is "pain" She often points to Emily and does the "pain" sign. She holds Emily's hand and "helps" her up the stairs and back on the couch, you can see the tight bond between these two Pepper sisters.

That's all for now. Have a great weekend.