The plan for Wednesday

Emily is doing well. Her pulse is still high actually, when they took her vitals and labs yesterday they found she was still running high. I begged Tracy to see the doctors about this after, and they were unimpressed and probably thought it was a waste of her time. They keep saying that she looks great and that's what is important and we need to just proceed with treatment. They will start to investigate her rapid pulse if it doesn't go away soon, but there seems to be no urgency.

Tomorrow she is going to go to the hospital at 9 for labs and IV hydration. She may need a platelet transfusion, so they will first take labs. After she is hydrated, maybe around noon, she will be put under for her LP, then back to the day hospital for IV chemo. A seriously long day.

For a treat tonight Emily had some cotton candy, I think her sweet tooth is back. I have two friends at work who have a cotton candy machine, and they made some blueberry flavored cotton candy a little while and sent some home for Emily. She really enjoyed it, of course :-).

I will update tomorrow night after the chemo-a-thon.

Emily is on an upward swing

Emily's fever seems to be completely gone, it's been almost 3 days now, and she doesn't feel the slightest bit warm. This past week shows what a roller coaster cancer can be. A week ago today we didn't have the results of the blood cultures, and we were told there was something "odd" in the x-ray. And here we are a week later, Emily is up at Grandma's baking cookies, Tracy is at work, and I am home chasing Haley. Normal stress. Like many difficult things we have gone through these past 7 months, the first time is always the toughest. If Emily gets a fever again I won't be as scared because I know what they are going to do to treat it.

Emily is even better than before this past hospitalization, the effects of the Dexamethasone have really decreased. She is much, much happier, her clothes are starting to fit again, and her appetite is returning to normal, whatever "normal" is :-).

Her treatment was changes from Tuesday to Wednesday this week. Since we know her ANC was 1100 on Friday there is a very good chance she will start reconsolidation. She needs at least 750 ANC to start the course. If she does qualify it will be a long day, being put under for an Lumbar Puncture (LP), IV Cytoxcin after she wakes up. Then she has to be on IV fluids for several hours and given IV Zofran for nausea. We will also be pushing some medcation in a syringe via IV port here at home, called Cyterabine. We are learning that we really don't know what to expect the second time she goes through these courses of therapy, but when she went through Consolidation she would get sick for 1 to 2 days following the treatment, but was feeling pretty good the rest of the week. Her ANC levels will be very low during this phase, it really knocks out the bone marrow, so she will be at risk for more hospitalizations. To guard against that we are going to do our best to keep her away from germs. That is a tough task with a wild two year old running around the house.

Saturday, Emily is feeling great.

I have no idea what Emily's pulse is, but she feels great. I found out that with kids they wouldn't really start to intervene until they had a pulse over 200. She is acting very much like her normal self. She had a nice night of sleep. She has been doing a lot of moaning while she sleeps, but last night that was gone. She also had no fever, it's been around 36 hours since she has had a low grade fever. She is also starting to get much less puffy, the effects evil Dexamethasone seems to be really wearing off. She has been up, listening and dancing to her favorite Hannah Montana and playing her Wii. She also read me a story. Pretty much a normal Saturday. Later today since her ANC is high enough we are going to go to sushi for lunch, just Emily and me. Tracy is taking Haley for a haircut while we are gone. Tonight we are going to watch a movie at home, Emily saw part of the Princess Bride yesterday and she wants to see the end. She is still scheduled to start reconsolidation on Tuesday. I feel like we are back on track.

Friday's exam

So Emily went to the clinic and had her blood drawn. They also gave her IV fluids. The cardiologists didn't want to see her. They said since all the scans looks fine, and that the tachycardia came on with the fevers, it's probably related to a virus, or whatever Emily is still fighting. The Oncologist are really dumbfounded as to what this is though. Most likely it's a virus, and her ANC is now 1100 so really high, maybe she is just now able to really fight it and it will go away. If it doesn't, if she still has low grade fevers and rapid pulse (tachycardia), then they need to start fishing around for what it might be, for example a fungal infection in her lung, hiding out. But Dr. Link said that he thought it was really an outside chance and that for now, he would guess it's a virus. She was seen by 2 Oncologists, and her NP, and Cardiology reviewed her charts, so really there is nothing else we can do but take it easy and wait. I am going to TRY to resist taking her temp all the time, and wont ask Tracy to take her pulse that often, it only makes me nervous and there is nothing we can do.

I think back to when she was diagnosed, and Dr. Davis telling us that there would be complications along the way. I also was so focused on maintenance starting, this whole week has been really tough and demoralizing. I'm glad I had a few "Vacation" days at work to use.

noon update

Emily is at the hospital getting some IV fluids and they are doing a blood culture and check for levels of ANC. She will get IV fluids the entire time she is there. They are also going to have her seen by a cardiologist, just because of the tachycardia. The Oncologists are focused on the recurring fever, but Tracy and I want the heart to be watched too. She's had the scans on the heart but we want an actual Dr. to sign off that she's ok.

I am heading up to get Haley and work from home this afternoon.

We still don't know what is causing this

Emily still has a very rapid pulse. I've been purposely not reporting the numbers on the blog because they are scary. Her heart was in the 160's when she was admitted to the hospital. When they let her out it was 140. Last night and this morning at remained at 132. We were hoping it had slowed down but I asked Tracy to take her pulse and it's still really high. Today marks a week that her heart has been working really hard. Emily also had another low grade fever last night, with one reading above 100.4. Something is wrong, for her heart to be beating that fast and for fevers to be on and off. I can't stand not knowing what is up and have asked her to have Emily seen today. The doctors still may not be able to figure it out, but I want to make sure they know it is still going on.

Emily is much better.

Em seems to be feeling a lot better. This morning Tracy and I noticed her breathing rate slowed down and we assume that means her pulse is lower. She also got up and was walking around and participating in the normal family activities. Much more mobile. The best news is she doesn't have a fever at all. I have taken her temp 2 or 3 times today and got in right around 98.6 each time. It's really a great sign she fought off the fever last night. It was really scary though, we got close to having to go. I called the on-call doctor, which I haven't done since March. All signs are she is getting much better.

Monday she is scheduled for labs and if she qualifies at 750 ANC on Tuesday she will have an LP and a big round of chemo to start reconsolidation.

still fighing a low grade fever

Emily had not had a fever for over 24 hours. We got home and she wanted to take a nap. I put her down and she wrapped up in her warm comforter. While she was asleep one of her favorite people showed up, Grandpa Steve. I left to pick up Haley at my Mom's and Steve stayed at our house. When Emily woke up she was damp with sweat. When I got home I also noticed she was warm. I took her temp and it was 100.3. The threshold for starting to matter is 100.4. So I was worried we were going to be right back in the hospital. She also started to cry a little thinking about having to go back. It's been several hours and she stayed on the border slowly working down to 100.00. I still wasn't happy to I got a wet wash cloth and rubbed her with it and had her drink some ice water. Then I waited a half hour and got a 99.6! So it looks like if we stay on top of it we can maybe keep her out. We can't give her Tylenol because it could mask a deadly infection. We can also assume her ANC is above 500, which is much better her 258 last Friday. She probably isn't neutropenic right now. But something is still up. It makes me very nervous, especially with the high pulse.

We're home but resting, at least I'm not. Tracy is at work tonight so I am home with both girls. Steve was a big help hanging out with his grand daughter, helping to put them to bed, and doing a quick shopping trip for us. Thanks Steve. Steve left around 9, so I am waiting for Tracy to come home around mid night. I should sleep, but I can't I'm worried about my girl.

Emily is home

Emily was discharged today. Her anc stayed at 500, dropping a little from yesterday but still OK to be let out today. Her pulse is still really high, but the Echogram and EKG see nothing wrong with her heart. The scary part is no one can really figure out why. Some think it is withdraw from steroids, but her main Oncologist, Dr. Link, doesn't think that's it, but he and the cardiologists really don't know why it is happening. She is also breathing rapidly. So we are at home, but not %100 by any means. Emily and I are going to watch TV and play video games this afternoon, and I will try to get her to bed early. This afternoon Grandpa Steve will be visiting and Emily is excited for it.

Not sure when we are going home

Emily is still feeling pretty well. She has been busy concentrating on art projects all day. She has not had a fever and they stopped the IV antibiotics. That's all great news. Her pulse is still very high and they just can't figure out why, so tomorrow she is going to have an Eccocardiogram and the EKG, just to make sure there is nothing wrong with her heart. She had to do an Ecco as a baseline before reinduction because one of her medications has a cardiac risk. They will have a baseline to compare with, we are worried that maybe the drug had an effect on her heart.

She had her chest x-ray today, and after all the worry, it turns out that her existing mass that we have known about is actually smaller. What happened was the ER docs were alarmed because they saw a mass. We warned them they were going to but they still raised alarm. It wasn't until today that Emily was able to stand up and take a deep breath and get an x-ray that was comparible to the previous x-rays. Everytime they have looked at the mass it has been smaller and smaller. It doesn't appear to be growing and their best guess is it is dead scar tissue from her tumors.

I don't know if or at what time we will get out tomorrow. If they want to do those heart tests, we probably will stay in patient until they are done, or they may release us to out patient to hang out and wait for the tests. I'd rahter keep the bed.

We no longer have a private room. We are in a room we have been in 3 times and out room mate we've had before.

Continued improvement

Emily is still continuing to do well. Her ANC was 600 this morning ! All of her blood levels see improvement. And she hasn't had a fever since last night. Her heart rate is still high, but trending down. Their best guess is the pulse rate is from steroid withdraw. They are keeping an eye on it today. Her blood cultures remain negative for infection.

Today she will get a chest x-ray to look at her mass in the chest. We hope and pray that nothing is going on there. The doctors seem pretty sure it's not bad, but until we know more, Tracy and I are nervous. They are also discontinuing the IV antibiotics today. If she goes to tomorrow morning with no fever, and her ANC stays above 500, she will be discharged tomorrow morning.

Very hopeful news all around. Once we get a chest x-ray result and news around that I will post an update.

Monday night, 72 hours into hospital stay

Emily had a really good day. We got her fever under control again this morning and she has gone all day without it returning. She spent most of her day doing art projects. She also read an entire mystery book from the library. She doesn't want to leave her room to go to school or the playroom because she has to wear a mask, which she thinks makes her look "weird". I even offered to wear one too, and she almost went for it, but I couldn't actually get her to leave the room. She is in a great mood laughing and doing her best to pass the time. A big improvement today over previous days.

Tracy and I are doing are best juggling the hospital and taking care of Haley. Tracy is also going to work Wednesday, which will be interesting. Tracy will be working and Emily and I will be in patient rooms, we hope Tracy can make it by on her shift. Actually I hope we are at home. I may work from the hospital on Wednesday. I am lucky to have a job that can be done remotely from time to time.

Unless things take a change for the worse, it seems like we are just waiting for ANC to get over 500 for a steady period, and for the fever to be gone and to stay away without any Tylenol. By the way if you are wondering why they aren't giving mortin for fever, which would be more effective, it's a chemo thing, they don't like to thin the blood at all which aspirin and it's derivatives (ibuprofen) cause.

More clarity, reasons to be hopeful

Emily was able to kick her fever with one dose of Tylenol and Codeine. That is wonderful news.

The Oncologists came for their morning rounds and were very positive about Emily latest lab results. Her ANC fell back to 300 which is not in the right direction, but they see an elevation in the lymphocites and other white blood cells that they usually see as a precursor for neutrofil counts rising. Her hemoglobin is also high enough to be considered normal so for now no more tranfusions.

The best news is that nothing has grown so far in the blood or urine cultures. What this means is this is probably a virus and not an infection. She will continue to get IV antibiotics though, until she can kick her fever without Tylenol and her ANC levels are above 500.

Tracy and I feel very encouraged with this news. Emily is also feeling well, with little or no leg pain, and has continued to have a healthy appetite through this. I just went on a run to the Menlo Park Safeway for a 5 pack of Corn Dogs :-) She won't eat hospital food so we are having to either make it at home or shop for her cravings.

Monday morning

Emily's fever and high pulse rate came back over the night. This was about 18 hours after her Tylenol dose, so it was probably masking the fever and helping with her pain. She was able to take some more over night, and Tracy said she feels cool this morning. She is still sleeping because she couldn't fall asleep until 130am. She isn't feeling well. I am going to go sit with her today while Tracy comes home and sleeps while Haley naps. I will update more after the docs come on their morning rounds.

Finally some numbers in our favor

Emily is doing better and we are starting to have more of an idea of the things causing her symptoms. Her pulse has slowed after her transfusion, she was very anemic and that seems to have made things better. Her temp is 36.6 (which is normal) and has been for 16 hours or so. She is not taking any tylenol per the Doctors order to see if she really doesn't have a fever or if the Tylenol was masking it. But she hasn't had Tylenol or Codeine since 6am and no fever ! They are fairly certain that the leg pain is from withdraw from Dexamethasone, or favorite chemo drug that keeps on giving. She is neutropenic because it is 13 days after her last dose of Doxerubicin and day 14 you expect to see it at full effect, so that explains why she is neutropenic. She was admitted with an ANC in the 250's, and at her last blood draw Tracy calulates it in the low 400's. Emily would need to be at least 500 to be allowed to leave the hospital, we stay until that happens. Also note, Tracy is not an Oncology nurse and calculating ANC is not trivial, so that number may change, once we see an actual Oncologist. (just kidding they are very accessable to us, we just don't need to know so we are waiting.) She also had a slight improvement in White blood cells, which means her marrow is at least doing something.

All in all the symptoms are explained at least. Tomorrow we should get results of the blood and urine cultures from the ER visit to see what exactly this infection is, and if we can treat it with a more appropriate antibiotic. Right now she is on a kill all antibiotic and it's most likely working, it seems to be from these lab results.

We aren't in the clear, but have a better idea of whats up here.

Emily is feeling OK, super depresed about being back in the hospital, but she remains her positive self dealing with this like a real champ. Let's all hope her ANC spikes up soon.

Sunday AM

Last night was a long night, but by the time I left this morning Emily was feeling a little better. Partly from the codeine and partly from her blood transfusion from last night. The transfusion did bring her pulse down which also let her relax more and get a good night of sleep. She hasn't had a fever for probably 11 hours or so, which is great. I spoke with one of the Oncologists this morning and they are starting to think the leg pain is not from Vinchristine, but might be from the fever and infection she is fighting.

Tracy will be with Emily today while I try to get some sleep. I am working on 4 hours of sleep since Friday morning.

midnight update

Emily is still having a really tough time. They couldn't get her pulse to drop for the past 20 hours, even giving her bolice IV fluids. About 3 hours ago they decided they needed to give her a transfusion and that seems to have helped, her pulse in finally falling a bit, but it needs to go lower.

She has had a fever on and off all day. Earlier I had reported that we had broken the fever, but it soon came back. Right now she doesn't have one, and let's hope it stays that way.

She is also suffering from really bad leg pain as a side effect from the Vinchristine. She is on and off in extreme pain.

I haven't seen Emily so down in her treatment. Tonight she just cried and cried that she was sick of this and just wanted to be in her own bed. It made me start to cry to hear her say it, and to see how sad she is.

She can technically have visitors but we ask that you check with Tracy and I first, we are going to really limit her exposure for a while here now.

Another update

They got the results of the second chest x-ray. The good news is they have totally ruled out pneumonia which the ER thought they saw. The bad or scary news is the mass that Emily has had in her chest all these months has changed, and they don't really know why. Dr Link is thinking it is because she was not able to take a deep breath for the x-ray and that is making the mass appear larger, but until he can verify that it is a concern to follow up on. He said if she were relapsing or if this were progressing to Leukemia he would have seen other signs in her x-ray and blood levels. I can tell though, that they are worried about this.

Right now I am here with Emily in her room, she is sleeping. When she is awake I can tell she is scared by how quiet she is being.

Her last temp read 98.8 so the fever is getting under control, though it seems to stay there and then bounce up from time to time. She is getting very strong IV antibiotics every 8 hours, the next dose is due around 5pm. I hope that after they have her on this for 24 hours we don't see any more elevated heart rate or fever spikes.

In 2 or 3 days they will do another x ray to see what's up with this mass. That part worries Tracy and I very much. that mass has always been something we haven't felt comfortable with.

Update on Emily's condition

Emily is in a private room at Packard hospital. She isn't feeling great but her condition has improved. Her fever is on and off, it just came back after being gone a while. They are not monitoring her heart but I assume the rate is still elevated. There is a questionable spot on her chest x ray that they are following up on. In the ER they were worried, but Dr. Link doesnt think it is something he is too concerned about.

We asked how long she will be in here and his best guess was 5 to 7 days, but it really all depends on her ANC getting above 500 and her blood culture results.

On the postive front she still has a healthy appetite, I made her some rice at home this morning and brought it in, she ate two plates full. I also stopped and got her a creme filled doughnut which she devoured immediately.

Tracy and I are very concerned but not as scared as we were last night. This is just part of treatment. Dr. Link and ALL the doctors we have spoken with are amazed that this is our first hospitalization due to neutropenia, it just happens and %70 of the time it goes unexplained.

I will update later today if there are developements, for now I feel like they have her stabelized. We just all hope her fever stays away and the antibiotics continue to be effective.

Complication, Emily has been hospitalized

Tonight everything seemed great. Emily was having a little pain while walking from the Vinchristine. It was also Tracy and my 10th, which we celebrated last night, but went out with the kids for dinner to celebrate as a family. We had a fun time.

When we got home Emily got ready for bed, and about 30 minutes after going to bed, she came out of her room to tell me she agreed with my decision not to give her a snack. I thought it was a new angle on getting food, reverse psychology or something. I patted her on the head and noticed she was warm. I took her temp and is was 102, which is above the danger level, she needs to be at an ER within 30 minutes of that reading. I woke Tracy up, she took her temp and got 101.5, still above the threshold.

We called the Oncology after hours number and they had the ER at Stanford prepared for our arrival. Tracy took Emily up while I waited for my Mom to come over to be here with Haley. Emily and Tracy got there and her heart rate was really high about 160 per minute, and she has a fever. They took her blood and she is neutropenic, meaning she doesn't have the natural ability to fight whatever she has. They started IV fluids to get her heart rate down and she is on a high dose antibiotic. She will be admitted to Packard tonight and will be there until this is all under control. We are really scared but this does happen in treatment and all we can do is be glad we happpen to catch this early tonight while she is still feeling relatively OK, and that we are treating is as I write this.

It will be several days for the blood culture to tell us exactly what infection she has, but for now she is being treated for general sepsis. I have the feeling she could be in patient a while.

Please keep Emily in your thoughts and prayers this weekend. This is a complication that is very serious.

Last dose of Dex

Tonight around 8 I will be giving Emily her last dose of Dexamethasone. Tracy will be at work, and I am sure we will call to tell her that we are done. Emily is excited to have this complete. It will also be the last dose of all the medications that are part of reinduction, so she's done with that part of the phase !

Yesterday she had her last done of IV Vinchristine in reinduction. She will continue to have Vinchristine once a month during maintenance, but that won't be for a few weeks. Vinchristine makes her tummy really unsettled and we dealth with that last night, but this morning she was not showing any of the effects.

Yesterday they also talked to us much more about the maintenance plan. First off the start date is October 21st ! that was nice to hear. Then some news that Emily is struggling with, but I am sure she will learn to deal with. They want to remove her port ASAP, which is going to mean she will need to have finger sticks weekly to draw blood, and will have to be accessed peripherally in a vein for the monthly IV. Baiscally a lot more pokes that she would like. I also worry that if complications happen we would have to have a PICC line again, which I think was the main catalyst for the blood clot. However, I know the doctors understand the benefits and risks of keeping a port in, and if they want it out, I fully support that decision. Emily is also going to have to take daily methotrexate along with 6MP, both in pill form. Other than daily pills and blood checks, we hope Emily's life will return to much the same way it was before March of this year.

Reconsolidation will start on Sept 23rd. It will be a long day, she will need to be put under for a LP Methotrexate therapy, and then several medications via IV port. She will likely throw up after these treatments, as she did in phase 2.

Hopefully Emily will be feeling better this weekend and we can get back out there and have some fun.

Almost done with the first half of phase 4

Phase 4 of Emily's chemotherapy is split into two parts; reinduction and then reconsolidation. This weeks marks the end of the reinduction portion of the phase. It's a bit confusing because each were a separate phase earlier but are rolled into one phase at the end. Today Emily went into the clinic to have her labs drawn so that hopefully tomorrow will go faster, without as much waiting for lab results before chemo can be administered. Emily is scheduled to get IV Vinchristine tomorrow, that is the last of the medication for reinduction. She is also on the last step of her Dexamethazone treatment and will be completely off of it this Wednesday.

Reconsolidation is scheduled to start on Sept. 23rd, but the start date is really blood count dependent so that's just the best guess we have. Reconsolidation will include among other things, 2 lumbar punctures, and IV Cyterabine, and Cytoxin. She will also be on daily oral 6MP medication. There are at least 2 other medications involved but I am writing this without her protocol in front of me and I can't remember the details.

Emily is still having a hard time, pretty much like what I described in my past post. Daily we can see an improvement in her affect but she is still not back to herself. And the food cravings continue to be out of control. Over the weekend she ate so much food, and stuffed herself so much that she had abominal pain for a good 12 hours after coming home. She is very insistent on getting the food she wants and I think it's harder for my Mom to say "no" than it is for us. Luckily we're near the end of the high dose Dexamethazone, it is the toughest medication Emily has had to take in chemo, in my opinion.

We hope Emily will feel like going back to school soon. I was hoping it would be this week, but I have my doubts at this point, right now she does not fit into any of her clothes and she is so puffy, I think she might have a hard time in front of other kids, and the last thing I want is for her to feel bad about the way she looks. I am sure she already does and doesn't need it to be called out.

As I write this post I am sitting here looking at Emily's first grade photo, back when she was very healthy. It's hard to see her change so much, to see her go through all this pain. I do try to take things a day at a time, but right now it's easier for me to think ahead 6 weeks and that she will be done with the hard part of chemo.

Another weekend

This weekend we are taking it pretty easy again. The big event actually is my 20th high school reunion tonight in Portola Valley at the Priory. Tracy and I are going and leaving the girls at my Mom's house.

Emily is still having a really hard time. The taper has helped with some of the depression, but her appetite has maybe increased as we taper. All Emily wants to do is eat. Yesterday I took her out for Japanese food at lunch, which right now is one of her big cravings. She ate a bowl of rice, a bowl of miso soup, and some edamame, then a bowl of green tea ice cream. Emily commented that she was "stuffed". I then met Tracy back at my office, so I could go back to work and she could take Emily home, and as soon as I was gone, Emily was begging Tracy for a cheeseburger. Then when they got home she ate several more bowls of rice, and so on and so on. We finally told her last night that she couldnt' have more to eat, and she burst into tears. We gave in and gave her some chicken broth, then she wanted bananas with peanut butter, and then bed. This morning she woke up and ate 2 bowls of rice and an egg with toast, and right now is begging me to go to Starbucks for hot cocoa. It doesn't stop. She doesn't fit into her clothes, and has a major struggle walking up two stairs from our family room to dining room.

We still have 4 more days until she will be totally tapered from Dex, and then these cravings will get smaller over time. I am glad we have been through steroids before in the beginning of treatment, I know these effects are temporary. It makes it much easier to deal with.

On Tuesday Emily will be getting IV Vinchristine to finish out re-induction. Then it's onto 5 weeks of reconsolidation, then maintenance.

Hard times

I was really hoping that the initial taper would have made Emily feel much better. She has perked up a bit, but is still really uncomfortable. She is still getting larger, like there is a lagging effect of the full dose. Right now she can't fit into her normal sized clothes.

When I got home from work tonight, my Mom was here watching the girls. She told me Emily felt a little hot. I took her temp and it is 99.5. I have taken it many times in the past hour and a half and it is consistently at 99.5. So she has a slight fever, which is a concern, but it would need to be 100.2 for over an hour for us to have to bring her into the ER. Hopefully it's just a minor fever and nothing to worry about. In an hour I am going to take it again and see where it is.

Tomorrow she tapers to a even lower dose of Dexamethazone, and I hope that she perks up even more.


UPDATE It is now about an hour after I originally posted, Emily's temp has returned to the 98 range. There is no worry this time, probably never was, just a nervous Dad. Tracy is at work tonight and I think I got myself worked up :)

More chemo, taper starts

Emily had her IV chemo today. It was a long day at the day hospital. She had to have her labs drawn and then wait for the results before she could get her chemotherapy. Since Emily's stomach was in so much pain, Dr Link also wanted to check her for pancreatitis just to be sure. She was negative for pancreatitis and her labs were great, so she got the chemo. All this took around 6 hours.

Emily started her Dexamethazone today. We can already see that she is perking up a little. More smiles and laughing which is really nice. She also wanted to play the Wii with me tonight when she got home from chemo. She will look puffy for weeks, that part I don't care as much about catatonic behavior she has been displaying.

The rest of the week we will continue to taper from the Dexamethazone, in all it will take 9 days to taper, cutting the dose in half every 3 days. So today she is on half the dose that she's been on the past 20 days, and Friday we will cut that in half and so on. She doesn't have to go back to the hospital or the clinic until next week.

Post 151

This our 151st posting on the blog. I can't believe that Emily has been going at this over 6 months, and we still have 6 or 7 weeks to go, until treatment will settle down. 2 and 3 trips a week to the clinic at the hospital, all the visits to the various clinics in the hospital, and a ton of in patient time. We've been through way too much. When Emily gets to maintenance, I plan to not update the blog as much, probably 1 post a week after we settle in. I hope when Emily is older, she can look back at this blog and get a sense of what this period of time was like for all of us.

There is nothing new to report, Emily is miserable and can't wait to start to taper tomorrow morning. She has one full dose of Dexamethazone to take tonight and then tomorrow the taper beings. I hope she feels better within a day or so, but I have no idea how long it's going to take for her to bounce back. She also has IV chemo tomorrow and I will have an update after it is complete.

Dexamethazone blues

Emily is really showing the signs of being on high dose steroids. We think the Dexamethazone is a little harder on her than the Prednisone. She will start to taper on Tuesday, the taper takes 9 days. She is very bloated in her face and belly. It is getting to the point where she isn't as mobile. She will be on Dexamethazone 9 less days than she was on the Prednisone, and I hope that means she will bounce back a little quicker. Who knows, we will see.

Because she is feeling so rotten, and it's so hot outside, we aren't doing much this weekend. Next weekend is my 20th high school reunion and I am really hoping Emily will be able to join me to it.

This next week she will start the Dexamethazone taper on Tuesday, taking half the dose she is currently taking. On Tuesday she will also have IV Vinchristine and Doxorubicin. She won't have to be back for treatment after that for a full week. My guess is she will have to go in on Friday for a blood draw as well.

No more L-Asparaginase shots

Emily is done with the L-Asparaginase shots. In Phase one she had 9 of them, and here in Phase 4 she just had her 6th and final shot. 15 very tough shots in all. Great job Emily. The nurses hate giving these shots, on Tuesday our nurse told us that of all the things she has to do as an Oncology nurse, Aparaginase shots are worst part.

Emily is glad to be done, but remains depressed. We are doing our best at keeping an up beat attitude around the house. She knows this will end and it coping the best she can to make it through. Emily has not been making it to school, and tomorrow her teacher Mrs. Maino will be coming be for some home school.

Emily doesn't need to be back to the clinic until next Tuesday for IV chemo, and that day she will also start to taper off of Dexamethazone.

Tough times, more chemo, Tracy going back to work

Emily had her 5th L-Asperaginase shot today. She also had another round of IV Doxobubicin and Vinchritsine. It was a long day, she had to have her labs taken and checked before we could start the Chemotherapy and the lab was backed up because of the holiday weekend. We had to wait around for about 3 hours before we could begin treatment. Emily took her shot well, and didn't even try to resist it, which makes it much easier to give and easier for us as parents to assist with. On Thursday she will be having her last scheduled Asperaninase shot in the entire treatment. Needless to say we are all looking foreward to them being complete. The Dexamethazone is really becoming difficult for Emily to deal with, it is making her really depressed. She often says "I hate my life, I hate cancer." She isn't interested in much of anything, and doesnt' even care if she watches TV or just stares at the wall. It's hard to see and deal with, but we know she will soon change back to the Emily we all know and miss right now.

Today we went over the next several weeks of treatment with our NP. The last shot is Thurday, she starts to taper from Dexamethazone next Tuesday, and still has two more IV treatments in reinduction. After reinduction is complete, she will go through reconsolidation and then maintenance. The best guess is we have 8 weeks left before maintenance. The reason that is only a guess is that Emily will need to make specific blood counts to enter reconsolidation, and may need to take a break between reinduction and reconsolidation to achieve those counts. If she does need a break then it will add time to the phase. Any way you add it up, it's nice to be talking with the medical staff about the maintenance plan.

Tracy is going back to work ! She will be going back to Stanford to her old unit on C3. Technically she is taking a different position and will not be working 12 hours shifts, she is going to start with 1, eight hour shift per week.