Wednesday, April 30, 2008

Emily had her weekly exam today. It was a very quick trip to the clinic, gave some labs, and went home. Emily is doing really well. She has much less body pain overall, and she is walking mostly on her own now. Her appetite has gone to near zero. Right now a calorie is a calorie so she can have pretty much anything she wants, but nothing sounds good to her, especially the things she craved just 2 weeks ago. Her Doctor says she is doing really well, he even muttered, "she's becoming like the model patient". That was exciting to hear. I talked for a while with Dr. Link last week and he reiterated something we were told the day Emily was diagnosed, he wouldn't sugar coat anything. So when he says she is doing great, it means great. Last week I was trying to get him to admit that there must be at least something that didnt seem right in her scans, and he told me, "If she were not doing well I'd tell you, she's looking really good."

What's coming up? Even though Emily is doing well, it's very likely that she'll be back as an in patient in the hospital in the next few weeks. In phase 2 the drugs almost completely suppress the bone marrow, and as a result she won't have much of an immune system. Dr. Link has told us twice that we should have a bag packed and that 10 to 14 days after the first Phase 2 dose, we should expect a hospitalization. We are on day 8 now. The likely symptom will be a fever. When and if that happens we call ahead and head to the hospital to check in. So don't be shocked that after all these good days that you'll read that Emily is back in the hospital. It's almost a given. Today she was getting close to being neutropenic.

Next week she is scheduled to have another lumbar puncture and an all day chemo, but it will be dependent on her blood levels, and many patients have to delay a week before they receive the second dose of phase 2 chemo. And IF she ends up in the hospital I don't know how that will impact the next dose. They want to let her recover from the dose she is on now before she gets the next one.

Emily is going to try to go to school as much as possible. As much as we can we are going to get out and take advantage of Emily being more mobile and excited to do things.

Monday, April 28, 2008

Amazing weekend

We had a really great weekend. It started off with a trip to the SF Zoo. Emily was excited about going we had talked about it for a few days. The weather in San Francisco was absolutely amazing, I would guess mid 70's, sun, no fog, no wind. It was even warm and balmy out at the zoo, which borders the ocean. Both of the girls had a great time. Haley was very interested in the animals, she was really into the Penguin display. Emily seemed to enjoy most all of it. We stayed 2 and a half hours, and by then Haley was spent and in need of a nap, and Emily was tired of being in the stroller. As we were leaving, parked 2 cars from ours was a familiar face, Emily's Hematologist and family were arriving just as we were leaving. We heard a "Is that Emily Pepper"" and looked up to see Dr. Wong. She said "Emily it's nice to see you, how about I look at that left arm?" She gave Emily a little impromptu exam in the parking lot. :-) Both Tracy and I were so impressed that Dr. Wong on her time off recalled Emily by name, remembered which arm has/had the clot and was just so nice and personable. I also think she was quite impressed to see Emily up in SF .

As we were leaving I asked Emily "Do you want to go the quick route home, or the scenic route," not knowing really what I meant by scenic route, but as a ex resident of SF I do know my way all over the City. Emily chose the scenic route, and we ended up over at the Palace of Fine Arts in the Marina district of SF. And as perfect luck would have it someone was pulling their car out and we were presented a parking space. Again the weather down in the Marina was warm and balmy. Tracy , Emily, Haley and I walked all the way around the palace of fine arts. It was really nice and peaceful.

Tracy and I were having so much fun, so we asked Emily if she wanted to stay over night in San Francisco? She was all over the idea, so we called the Hyatt Regency and and got a room. The Hyatt is 2 blocks from the Ferry Building in SF on the waterfront. We spent the evening enjoying our first night away and having fun. On Sunday the great weather continued. We got home around 1pm and had a nice afternoon relaxing at home. It was so much fun to get away, even if it was just an hour away.

Emily went to school today from lunch time to the end of day, and is planning to go again tomorrow for part of the day. She is so excited about being able to go back. Next week she may need to wear a mask because her ANC levels in her blood will be below 1000, which means she will be neutropenic/ no defenses against anything. We don't know if she will want to go to school with a mask, so we'll see how that goes. She will be starting home school officially very soon as well. Walking remains a challenge, she is doing more and more, but it's very slow progress with some set backs.

Our next hospital visit is on Wednesday, just for labs, Tracy is giving the Chemo at home this week, which is nice for all of us.

Thursday, April 24, 2008


Today was yet another good day for Emily. :-) We ended up not going to school but she had a very nice playdate with her good friend, Olivia Scott. She was feeling well enough to play with Olivia, and when she walked around the house she only needed occasional spotting up and down our two steps into the family room. Go Em!

She still has not thrown up since she had her Cytoxan at Packard on Tuesday. She does complain of "tummy pain" but no vomiting. We are giving her the Zofran (anti-nausea med) whether she needs it or not, as instructed by our NP and all the nurses, but I think we'll stop it after today.

Emily's hair looks very thin now and just continues to fall out in handfuls. She wakes up with tons on her pillow and loses a lot on her clothes throughout the day. Last week there was a gigantic clump of matted hair on the back of her head that she would not let me near with a comb, no matter what. It turned out to be a big tangle of hair that had already fallen out and was just hanging on by a few strands. I showed Em the clump after I cut it off and she thought it was hilarious that she'd had that thing on the back of her head.

Good parents we are, we have been trying to get her in for a haircut. A short haircut. Since she is so comb- and brush-phobic, I'm thinking that unless we get her a little Pixie cut we will find more and more humongous matted hair clumps on her little head.

I finally got her in to our local kids' haircut place yesterday via the "less hair in food" angle. But no Pixie. She wanted a bob, "like Haley's." She didn't really get that much length off, but since she let the stylist actually touch her hair with a comb, it looks cuter now without all the extra just-waiting-to-fall-out hair.

After the stylist combed and preened her and applied the spray-glitter and cute clippie, it lifted Em's spirits. She looked at her puffy-cheeked reflection and smiled and said, "I love it." We went home with the essential lollipop souvenir plus a little envelope of hair per Em's request. I'm thinking that this might be Emily's last haircut for some time.

Wednesday, April 23, 2008


I forgot to mention in yesterday's post that Emily went to an hour of school on Monday, just before she went over for her transfusion. Kids are amazing, there was Emily in need of blood transfusion because her levels were so low, hanging out doing a math project at school. We got a note from the doctor so we can have Emily home schooled, but we'd like her to go over to Country Lane as much as she wants. She almost went today but wasn't feeling that great. We live 2 blocks from her classroom, so it should be easy for her to go here and there when she feels like it. Emily would love to be back there full time, she really likes school and misses her friends and teachers. Lately Emily has been saying "I wish I didn't have cancer." She didn't say that in the beginning, I think the entire impact of this is sinking in.

She did not get sick after her dose of Cytoxan which is pretty amazing. They had to hydrate her via IV before and for 4 hours after, the stuff is so nasty, and it usually makes you sick. Her stomach is a little upset today but nothing like what you hear about. Tracy is also giving Emily an IV dose of Cyteranbine via the port each day through Friday here at home which also can make you sick but so far that is not having an effect on Emily. She is also not using the stroller at home anymore, so a lot of walking, with Tracy or I spotting her. I don't think there is any L-Asparaginase this phase so hopefully she will have more mobility. She hopes to get a little school in tomorrow.

Tuesday, April 22, 2008

Phase 1 results are in

I'm here at the hospital and we just met with Dr. Link about the results of phase 1 of Chemo. The results are very positive, she is technically in remission already. She does have some residual mass in her chest, and that may be there forever. The mass is not reactive in the PET scan, so that means it is not growing and will just need to be monitored. Other than that, she looks as good as she can look at this phase. Dr. Link said its a major hurdle that needs to be crossed, %94 of people with Lymphoma make it through Phase 1, and Emily is in that camp ! I'm so happy that all of what she's been through continues to pay off. So it took 6 weeks to knock the cancer away, now we have to keep it that way.

Phase 2 start

Today we are starting Phase 2 of Chemo. Last night Emily was at the hospital getting a transfusion until 9pm, and we had to be back this morning at 7am. At 8:30am she was put under for a Intrathecal injection of methotrexate. She was back in the day hospital bed by 11am, and ready to eat lunch. Next she got her Cytoxin via her port. And now she is on an IV for the next 4 hours to keep her hydrated. We should be out of here by 3:30! The side effect of today's chemo is bad nausea, so we are probably in for a long night. We have Zofran and Adivan at home to help if it gets really bad.

Emily is walking more than she has been, more and more each day. She can make it across the house, and part way back, which is a major accomplishment.

We have added new dates that we could use help with meals, the link to the Quickbase is on the left or here in this post. We have tried our best to synch it with our chemo schedule for the next several weeks.

Sunday, April 20, 2008

Good weekend

Emily had a really good weekend. She was doing a lot more walking than she has in a long while. She doesn't have much energy but she is in a good mood. This morning we all went out for breakfast. That was the first time since this all started with Emily that she had been out for a meal or really out for much of anything. This afternoon she mostly rested and watched TV, but is much more talkative than in weeks past.

Tomorrow the plan is to access her port for the first time which is supposed to be painful. With have Lidocaine cream for her Lovenox shots, and we will put it on the port access site an hour before the appointment. The plan is for Emily to have a blood transfusion tomorrow to give her more strength for Phase 2 of Chemo which starts Tuesday.

Friday, April 18, 2008

Quick Update

I am exhausted so this will be quick.

My Mom's heart surgery is over and it was successful! Quite an ordeal. It lasted 5 and a half hours, much longer than I had been told yesterday. She had not woken up when I left and they plan to let her sleep until tomorrow morning.

Emily had a super day from what I can tell. She was in a great mood when I got home and we are playing the Wii right now.

I am EXHAUSTED so that's it for today, I am going to go sleep for hours, the past two days have been so stressful. I can now sleep knowing my two patients are resting well.

Thursday, April 17, 2008

the PICC has left the building

Emily's surgery went well today. We all woke up at 6:15 today and headed off to the hospital for Em's procedure. It got off to a somewhat rocky start. In order for Emily to have surgery her clotting factors in her blood needed to be checked since she has been on Lovenox. They were not able to draw blood from the PICC line so they had to poke her again. She was so upset that they had to give her 2 units of Versed to calm her down. Versed also makes you have amnesia so she also won't remember having her blood drawn. In fact they gave her a stuffed animal after they drew her blood, and 20 minutes later she was asking where the stuffed animal came from. After a while we got the lab results back that told us that Emily could have surgery, so at about 10:30am she went into the O.R. Her procedures lasted around a hour and a half.

She got her implanted port, which I have been calling a "mediport" in previous posts. It turns out that Mediport is just a brand name and she ended up with a different brand, but it's still an implanted port. What does that mean? I had no idea until a few weeks ago myself. Basically she has a little walnut sized bump in the middle of her chest, all covered by her skin. So when they don't need to access it, there are no tubes (or lumen's for the medically trained readers) hanging from her body. She can take a bath, or in the summer she can swim with no worries. When they want to access her port, they stick a needle into the walnut shaped bump in her chest and can attach IV medications to the needle. The access needle can be left in place for up to a week, so when we have things going on every other day we will just keep it accessed and flush it like the PICC.

They also did all the other procedures we were expecting. They removed the PICC line, gave her methotrexate, and took bone marrow for testing.

We still do not have any results of the scans earlier this week.

Emily should not have to go back to Packard until next Monday, when they plan to give her a transfusion, to give her a little boost for the second phase of Chemo, which is now set to start on Tuesday.

Last night to prepare her for surgery we had to scrub her head, and as a result the hair loss is pretty noticilbe. you can now see scalp around much of the top of her head, and all day we have been finding hair everywhere she's been sitting. My best guess is a week from now Emily will be bald. A lot of people have asked me if I plan to shave my head when Emily goes bald as a sign of support. (Not that I have that much to shave :-) ) But Emily is dead set against me doing that or even suggesting it at this point. and other people have asked me if she would like them to shave their heads, and the answer is always no.

That's about it for today's update. My Mom's heart surgery is at 10am tomorrow. She was told today by the cardiac surgeon that she was a walking time bomb and is extremely lucky to have had this caught. If she goes into pain tonight they will do surgery even earlier. They also told her she has between %97 and %98 chance of surviving this surgery, so I feel somewhat assured that she will be ok. Her recovery will be tough, since she also had a knee replaced not too long ago. Once I know she has survived this surgery, this blog will go back to %100 about Emily.

It has also been a while since I said "thank you" to all of you who have been supporting us through these weeks and what will turn into months and years. I can't believe this happened to us, I still can't, but I am so thankful that we haven't had to do this all alone.

Wednesday, April 16, 2008


Before I start tonight's post, let me first report that Emily had a good day, I will get to that in a moment.

Today we were thrown another challenge in the family. My mother, Gail, has been admitted to the hospital with a tear in her Aorta artery, pericardial effusion, and possible leaky aorta valve. It's life threatening and she will have open heart surgery within the next 48 hours. She is on a cardiac monitored bed at the hospital and won't be going anywhere until she has surgery. Her recovery will be slow and it's going to be hard on her. She had been going through a series of tests when this was discovered so we are lucky it was found before it ruptured on it's own, most likely fatal. The repair she is getting is one that has been used for 40 years with great success. Like I said this Blog isn't about my Mom and I'd like to respect her privacy somewhat. However, this effects us all so much that I had to share. Emily and her Grandma are really close so it effects Emily too. She is aware that Grandma needs surgery this week too.

So now Tracy and I have two close family members in two separate hospitals having surgery one day after another.

Emily had a really great day. She spent most of it out in the back yard. She took 6 steps on flat feet. She had a shower and washed her hair. And she has that Emily smile back that I love so much. tomorrow Emily is having surgery at 9:30am so we have to be at the hospital at 7:30 to check in for it. She will be having her PICC line removed (YEAH), Mediport Placed, Intrathecal Injection of Methotrexate, Bone Marrow Aspirate. The plan is for her to come home tomorrow night.

Tuesday, April 15, 2008

Getting ready for Phase 2

Today Emily had her PET scan. It took a while since she had to wait 45 minutes after the sugar was injected until they can start the scan. Emily was NPO for the procedure so I had some food ready for her the moment she was done.

We got a call from our NP and Emily's medical team had met today to go over the results of the Ultrasound with respect to the clot and the surgery needed to remove it and place the Mediport. The great news is the clot in her subclavian vein is gone! That makes the risks to her surgery much less as the PICC line is not occluded in that vein. She still has some clotting down the arm so after surgery on Thursday she will go back on Lovenox for a while until a certain blood marker returns to normal. So the Hematologist is thinking after some time here she will be able to go off Lovenox all together and we will just watch that marker in her blood. M y guess is that when she goes back on L-Asparaginase she may have to go back on blood thinner, but at least now we know to watch.

So, what that all means is this Thursday Emily is going to have the surgery she was supposed to have last Thursday. The surgical menu includes; Removal of the PICC line, placement of the mediport, Spinal injection, and bore marrow aspiration.

Then on Monday Emily will start the second phase of Chemo, called Consolidation Phase. During these past two weeks, Emily was supposed to have rest, but the blood clot cut into that. Her blood levels are high enough to start the next phase, so they want to.

One month of chemo down, twenty three to go.

Monday, April 14, 2008

Quick Update

I have come down with the stomach "flu" and I am working on getting our taxes done so I don't have time for much of an update.

Emily went in for her Labs, CAT Scam, Ultrasound, and X-ray today. The only results we know are from the labs, and she is looking as expected with those results. Tomorrow we will hear about the Ultrasound from Hematology and talk about the clot. Tomorrow Emily has a PET scan.

On Thursday we might do the Port placement surgery and for her to get a intrathecal (spinal) shot. We still don't know about Thursday until we talk with some Doctors tomorrow.

I couldn't go today because I am sick, but Emily came home and reported her tummy felt better today than it has since this whole thing began.

I will have a longer update tomorrow, but all is well for now.

Saturday, April 12, 2008

Another good one

Today was another good day. It started off on a negative note, I asked Emily how she felt when she woke up and she responded "miserable". But sometime mid morning her spirits were noticeably higher. And over the rest of the day we had a joking, smiling, laughing Emily at times. Her tummy remains a real problem so she can go from feeling pretty good to feeling not so well quickly.

Even though it is Saturday we needed to stop by Packard for her labs to be drawn. It was the quickest visit we have had to date at Packard. We needed to have a timed blood draw, at 12 noon, so we arrived at 11:55, had the labs drawn at 12:05, and were out of there by 1pm at the latest. To our surprise Emily requested to hang out with a friend, which she hasn't asked to do for at least 2 weeks. We stopped off at Emily's friend Gray's house for a visit. Emily wasn't very talkative during the visit, but we think she really liked being around other kids. This evening a neighbor dropped off dinner, we put Haley to bed early so Tracy, Emily and I can hang out and watch movies and hopefully all go to bed relatively early.

Friday, April 11, 2008

She's a Rock Star

Given all Emily is facing, Cancer, blood clot, blocked intestine, Neuropathy, edema, and mood swings from Prednisone, she managed to put in an impressive day. So did Tracy, Haley, and I.

After my daily run to Walgreen's pharmacy, I came home and Tracy and I put Haley down for her nap. While she was napping we gave Emily a shower. I don't want to embarrass Emily, but she hasn't had a bath or shower in over 3 weeks. She really needed it, and her skin was also starting to get really flaky. I cleaned off a plastic lawn chair and we put it in the shower and moved Emily in. We gave her a really nice shower, and rinsed her hair. She didn't want us to scrub her hair because it's really coming out now and she wants it to stay as long as possible. Then Tracy put lotion all over Emily just after the shower. She looked so much better, and she also told us she felt so much better. Her skin feels the way it should and that is so nice. Tracy and I also think she's starting to become less swollen since we are tapering from the Prednisone. After the shower, we dressed Emily. Haley woke up from her nap, and all four of us went outside. It was 80 degrees here today, and just the perfect amount of humidity, it was gorgeous. Emily commented how nice it was outside. She was in Haley's stroller and Haley was walking. One of our neighbors had offered to watch Haley so we stopped by and dropped Haley off. After we got home, Emily and I played to Wii, and Tracy is taking a long afternoon nap.

Obviously from this post you can tell today was a much better day. We have to go to Packard tomorrow, because Emily needs a blood draw to ensure that the blood thinner is at a level that is therapeutic and to check her sodium. Our NP seemed like it would be a big deal with us to come in on the weekend, she said "if you wouldn't mind I would feel a little more comfortable if you could come in on Saturday", it sounded like some parents complain about having to come in on weekends. Tracy and I are the opposite, if they even think they want to see us, we will make it happen.

Thursday, April 10, 2008

Tough days and nights

I remember thinking to myself and commenting to Tracy a couple weeks go, how easy it was to keep my spirits up. Because Emily's spirits are low now, the real challenge for us has started.

Today we had an appointment with Hematology to take a look at Emily's clot. From the exam it looked like the clot has not grown which is what we wanted to see. Emily's level of Lovenox is at a thereaputic level, which is also good.

Last night was maybe the toughest night I have had since Emily's was diagnosed. She is extremely bloated, she really can't get in or out of bed without significant levels of help. She has also developed Neuropathy, or pain in her extremities. She can only put weight on her tippy toes. We are using Haley's stroller to wheel Emily around the house. I was expecting this leg pain would be around for a few days, but we were told this could go on for months if not years. She is in so much pain that we got Codiene tablets for her to control it when she wants.

Tracy and I are pulling every last bit of energy we have, just to cope and to be there for Emily. I know I will make it through 2 years of this, but only if I take it day by day, and even that is becoming a real challenge.

Wednesday, April 9, 2008

Tracy's observation

I didn't include enough detail on how this clot was noticed and want to pass this along. Tracy is the one who noticed that Emily's forearm was 3cm larger than the other. I think it's amazing that she noticed it. I would not have. Once she pointed it out, you could tell but still it was a really observant call. Dr. Link was also impressed that we/Tracy noticed and went in to the ER on an observation, rather than Emily presenting symptoms of a clot. In fact one of the reasons he wouldn't think of admitting her is because he knows she has parents who won't forget a dose or give the shot incorrectly. Not sure I mentioned it but with this Emily gets two shots a day for the next few months. Luckily they are subcutaneous and simple to give. Emily is so cute about how good Tracy is at giving shots. "Mommy knows how to give shots because she's a nurse, and she gives the fastest shots of any nurse I know" Quote from Em from tonight.

Once again Emily is so lucky to have a nurse as a Mommy, and Tracy is an amazing Mommy and diagnostician. If the surgery went as planned on Thursday with a clot around the line, things could be worse.

I am now able to see that I am thankful we know about this, we are treating it, and Emily isn't symptomatic.

Tomorrow/technically later this morning, Emily starts her taper of Prednisone as planned. I can't WAIT for that to be gone. She is very bloated and looks sick. She cant fit into her clothes. I think that is also playing on my emotions and how I am feeling about everything right now. Right now Emily is pretty much only able to sit and be read to, watch TV, and she also likes to watch me play the Wii, though we're always talking about her getting back into the game, and I can't wait until she feels like it.

Tuesday, April 8, 2008

Update on the clot

We found out a lot more today about Emily's blot clot, and need to find even more information as well.

I could tell by some of the comments today that some of you my have in your head that this is a small thing or that it's "over" because we went to the ER and we are back home. Emily has a complete thrombosis of her clavicle vein, that goes right into her heart. They were very concerned that the clot was actually in the heart, so today they ordered a Ech-gram to look at the blood flow to her heart. they confirmed that her clot is 4-7 inches long and completely blocking the clavical vein. You can see the other vein in her chest now because they are carrying the blood flow where the blocked view would have. This treatment will take 2 to 3 months and in the short term may derail her cancer treatment. We can't get a spinal shot that was ordered for this Thursday when she would have had her port placed. Now we have to delay that and wait for the clot treatment to start to make progress before we can proceed. The clot has fused itself to the PICC line, and while that is the reason for the clot most likely, they cant remove it because they would fear causing an embolism. So it's treatment with Lovenox and just wait and see.

Why did she get this clot? We don't know for sure, but one of the side effects of one of the chemo drugs, is clots. They see them from time to time, but not usually this large. They are doing a complete work up to see if Emily has a hyper-clotting condition. If she does it will effect her treatment and other things in life, but most likely its the PICC line and Chemo that ha caused it.

I am still a little uneasy that she is at home, but I think that is really me being ignorant, because none of the Doctors seems overly concerned or like it was a tough call for them to make. I asked every single doctor is there was any reason to be cautious and have her checked in, none of them said that it was needed at all.

Emily has heard about the clot, but has no idea that she should be concerned, which is good.


Tonight we noticed that Emily's forearm on her PICC line side was noticeable swollen. We were worried she may have a blood clot so we brought her into the ER. unfortunately we were correct, Emily has a massive blood clot on the vein where the PICC line is. At first they said she would be admitted because of the seriousness of the condition, and then somehow they reversed that decision and sent us home with blood thinner. I really thought we were over blowing things tonight and this was going to be nothing. why can't Emily or us get break? This is so hard.

I have to admit that I do not agree with the decision to send Emily home. The decision was made with the Oncologist, and consulted with a a Hematologist. So I have to accept their decision but I don't like it and would not sign the discharge papers. I won't be sleeping for a while. I do understand that people with far more experience than I will ever have made this decision but it's hard for me to accept anyway.

Emily will be seen again tomorrow and I'll learn more about what's up. Updates when I have them. They told us there would be unexpected challenges along the way, this is one of them, and I am having a very hard time accpeting it, I love Emily so much and I am so worried about her.

Sunday, April 6, 2008

Happy Hollow

We went to Happy Hollow in San Jose with our friends the Scotts. Happy Hollow is a low-key park/"amusement park" and zoo. We all had a good time; Emily especially enjoyed the puppet show. It was also hard for Emily. Because of her leg pain she had to be in a wheelchair. After an hour and a half she wanted to go home so we did. The NP we saw on Friday said that this period is some of the worst Emily will feel through chemo, so to me that she even went out today is amazing. No hospital tomorrow; this is the longest break she has had.

The picture is of Emily eating pizza during the puppet show today. She is eating a lot because she is on a mega dose of Prednisone, which is one of the main important drugs. We start a 10-day taper from it on Wednesday which will be good, I think.

There is something that Tracy and I have noticed about Packard and wanted to share so you all get the idea of how into care these people are. We have a phone number that we can call 24/7 and we get patched through to the on-call oncology fellow or NP. When we do, we identify ourselves, but as soon as we say, "Hi this is Chris/Tracy Pepper," they say, "Oh, hi! How is Emily? She's had an upset stomach; how is that going?" I'm not exaggerating. Or we call in with an issue, and the next day we will pass an NP or an MD in the hall at the hospital and they will initiate conversation with, "How's Emily's tummy?" or "I heard she was sick last night." Even the surgeon who placed her chest tube 4 weeks ago remembers Emily's name, knows who I am, and gives me the supportive "Hang in there, Dad" look at me to this day. So we know by the way they act and speak to us that they talk about Emily, daily, in detail. They are amazing people.

Saturday, April 5, 2008

How are we?

Emily is doing great today, she's even requested a play date with a classmate of hers. We are excited she wants to do that. Most of today's post is about the Pepper family and not specifically about Emily.

Many people of have asked directly or indirectly how we are all holding out? How we are? If we are doing ok? Etc. I can assure you that Emily has a "Care Team" and that includes her Oncologist and his medical staff, there is also access to social workers, and psychologists and other support services. They check in with us to see how we are coping and what they can do to help. They have helped by listening, and also helping us get things done. They have our whole family in mind for the care plan.

I really can't directly answer, even for me, how I am. That changes from day to day, moment to moment. Sometimes I'm up beat and positive, optimistic, then sad, angry, afraid, overwhelmed. I remember the first night when we were transferred from the ER to the Pediatric Oncology ward the first thing they said to Tracy and I was "I want you both to know that this is neither of your fault." To me it seems odd that people would blame themselves for their children getting cancer, but apparently that is so common that it's the first thing they say. I wanted to blame her Dr. in the beginning of all this, how could he have missed this just 6 days before the ER nightmare? I have learned he couldn't have known, and we found out in a very common way for Lymphoma.

I have a degree in psychology, and I remember there was a theory on grief called the Kublar Ross model of grief. Kublar-Ross's theory identified 5 stages of grief, they are, Denial, Anger, Bargaining, Depression, and acceptance. I can say that we both Tracy and I have experienced these stages to some degree or another.

I also want to assure all of you that we are taking care of ourselves, and using the mental health benefits we have on our insurance and that is being provided to us by the medical staff. You can't get through all this without some level of support and some outlet to vent. So when I say we are "OK" it means we are dealing with this the best we can. We are taking advantage of the support and working in what we have time to do for ourselves. The most important thing is we ARE dealing with this head on, we couldn't have it any other way for our family or for Emily. When this first started I told myself, that no matter the outcome, I would only let this make our family stronger. My room mate from college is a childhood Lymphoma cancer survivor and he shared with me first hand many times how the cancer had an impact on his entire family. He survived and is a great and successful person, but cancer paid a high toll on him and his family. It will on ours too, but I want to minimize the negative and grasp onto what we can do to be stronger more giving people after this. Emily will be so strong there will be no stopping her and the rest of us Peppers.


Today Emily went in for labs, and had her PICC line dressing changed. Tracy and Em met witb an Oncology NP who said the labs looked good and Emily is doing well considering how hard she's been hit with Chemo.

Emily wasn't sick today, just a little upset stomach. She is really tired but it is all as expected.

I am back at work and didn't go to the hospital today. It's hard to not be with Emily all the time but I want to try to get back some routines. I am going to work from home more often, which is an option at Intuit. Of course I will take time off to be there for the big stuff and the regular weekly meetings with her Oncologist.

Thursday, April 3, 2008

Emily wasn't as sick today as yesterday. She was pretty tired all day and had some upset stomach symptoms. She slept most of the day because she was up until 3am getting sick every hour or so last night. This afternoon she got hungry again and kept the food down. She also held down the water, grape juice and pomegranate juice, I picked up for her. Emily's hair loss is accelerating. If she would let us wash her hair, I don't think much would be left, it's just sort of hanging on, and she's hanging on to it.

Tomorrow Emily only had to have her labs drawn at the hospital. That marks the first time she hasn't had to get chemo on a visit and should be the lightest day at the hospital since this all started almost 4 weeks ago. It's nice her body gets to rest.

Wednesday, April 2, 2008

Phase One, Almost Done

Today Emily got her last of 9 shots in her thigh. As usual she took it like a champ, but this time she knew it was the last one for a few months. She also got her last dose of Donorubicin and Vincristine which are administered via her PICC line. She had an exam by her nurse and Dr. Dahl. As he left Dr. Dahl said he was "very impressed by the way she is looking."

For those who don't know what I mean by PICC line, it's like a semi permanent IV, that you can give drugs through, and also take blood from. Next week Emily will have surgery to place a "Port" the "port will be a more permanent way Emily can take IV medication and have blood drawn. It is placed just under the skin so she has to get a small prick when they want to access the port. The good side of it is we don't need to flush it at home, or change the dressing. She can also bathe, and swim. In the next phase, we will be giving IV medications at home, through the port.

For the next few weeks it's pretty much labs draws, and the procedure to put in the port. When they place the port, they are also going to do an intrathecal injection (shot into her spine) of methotrexate. She also has a PET and CAT scan scheduled. She isn't getting more chemo and her blood levels will start to increase over the next 3 weeks. She will also be tapering off Prednisone starting next Wednesday. she gets a few weeks to regain her blood levels and then it's time for the second phase. I'm really looking forward to the mood swings and food urges to be over. Tonight we had the food network on, and they were making hummus. Guess who wanted Hummus, NOW. So Daddy went out for carrots and hummus. (Actually that's a great snack)

Tonight Emily is really sick. She has been the day of, and the day following her Wednesday Chemo. She has been screaming in pain, and throwing up a few times. Yes this is the Chemo experience I have been expecting. We called the Dr. she was in so much pain, and there is basically nothing we can do except comfort her and be with her. After she threw up a few times she started to feel better.

You can tell from reading our blog that this whole experience is a roller coaster. One day she seems happy and everything seems great, and the next day she's sick and in pain. Tracy and I have to be "on" all the time and it's exhausting. I am happy we can see the end of the induction phase.