July 29, 2008

As Promised


Hi, today is my last day of being eight months old.


I'm getting better at standing. I'm very sure I can do this on my own, but mama is not so sure.



My eyes used to be bluer than mama's, but this month they really turned a brownish greenish hazel.


Mama left the room for three seconds and I figured out how to be a snail!


These are pictures of Mad's room. It's my favorite room of the house and maybe the only part of this house that I will miss when we move. Yellow is definitely not my favorite color, so we took a big chance when we painted the walls. If the new tenants are who I think they are, the twenty-one year old male that will inhabit this room will not appreciate the yellow walls. Sorry!

Madeleine's counts on Friday were at 330 (ANC), but her white blood cells, hemoglobin, and platelets are all up from last Monday so I'm pretty sure she is on her way back up. We have clinic again on Friday, and nothing (!) at all this week until then. wahoo!

July 28, 2008

July 26, 2008

Star Wars


Comic Con is in town this weekend. This picture was taken at clinic where a couple of these Storm Trooper Star Wars guys were visiting the kids. I think it's funny, Madeleine is all, "Eh. Whatevs. You never know what is going to happen in this place."

On the Move

Are most parents this excited when their baby starts crawling? I don't know. She's really crawling now. I was worried for a long time because I thought that her leg would stop her from being able to get around, but she's figured out a way of half dragging it that works surprisingly well. The only down side is that she now has carpet burn on her knee...

Clinic never called with her counts yesterday, so I'll try to call them today. I guess if they didn't call it's a good thing, and means that she doesn't need blood. Hopefully it means that she's on her way back up. I need to call regardless though because they didn't give me an appointment for next week. We have NOTHING scheduled for next week and I don't know what I would do with a whole week with no doctors appointments!

My new camera arrived yesterday so look out for new pictures later today or tomorrow.

July 24, 2008

Healing

I meant to say in the last post that we are not too worried about the echo results. It is rare (according to the cardio nurse practitioner) that they find any problem in kids with cancer that are getting these tests due to chemotherapy. We probably won't be informed of any results at all unless of course there is a problem. So, I'm sure there is nothing to worry about on that front.

Madeleine is using her right leg more and more. She is starting to crawl forward now, a little at a time. I think it takes a lot of effort because she gets frustrated pretty quickly. Ryan and I have both seen her move her right leg forward in the last couple of days, which is a huge improvement. She is also becoming more interested in it, she tries to grab it with her hands and pull it up to her mouth. So, I think she is doing well with recovery for the leg.

Clinic tomorrow for counts. Hopefully she's on her way up, but I kind of have my doubts about that.

July 22, 2008

Counts and Echo

Madeleine's counts are low, but not super low. Her ANC is 650. Under 500 is considered super low (that's my own fancy terminology, the more medical term is "neutropenic.") She has been much lower than this before, so we aren't too worried. The clinic wants to see us again on Friday to see if her counts are rising or falling.

She was sedated this morning for her echocardiogram with something called chloral hydrate. It was given orally and was a little rougher than her normal sedation (propofol) for the MRIs. Propofol is given through her line and knocks her out within seconds. Chloral Hydrate made her very sleepy, but also very agitated. She hated the taste, and probably the sensation. Once she was asleep though everything was fine. It lasts about six hours so I have to keep waking her up every 30 minutes just to make sure she's still okay. She was awake for a couple of hours earlier today but was acting pretty loopy - very little head and neck control, very wobbly. It's sort of like having a newborn again.

July 21, 2008

All the babies

We survived all of our doctor's appointments this morning and Madeleine is now taking a well deserved nap. I don't know yet what her counts are from her blood labs, they'll probably call later this afternoon.

We took a chance on Madeleine's immune system being healthy this weekend (She is typically okay the first week after chemo, and then drops in the second week) and had a great time visiting with friends from out of town, and in-town friends too. In total there are four girls ages three and a half, twenty one months, nineteen months and our eight month old.
Sofia can't decide whether she wants to hug Madeleine, or hit her on the head - such is the life of a toddler. We had a fun trip to the zoo on Sunday with everyone. It's fun to see the older girls excited about seeing animals. It's weird to see friends from college and realize that there are all these little people around now. I was so excited about getting pictures of all the kids, but unfortunately my camera has died. So, until I can get a new camera, I won't be able to post any new pictures.

In other news, we've decided to move to a house much closer to work for Ryan. He's commuting over an hour now. With Madeleine's continuing treatment it looks like we will be in San Diego for at least another year. We want to remain with the same doctors for as long as possible, especially while she is in active treatment. This is our fifth move in just over six years. I'm not looking forward to packing and moving, but it will be nice for Ryan to be home earlier, and for us to be in a better neighborhood.

Echocardiogram tomorrow. I hate having her be sedated, but I suppose these are important tests.

July 17, 2008

Round 5, day 3 Done

Yesterday was fine, and Mad seems to be feeling okay.

Next week we already have four medical appointments (make that five, I have an eye doctor appointment too) scheduled. This is seriously a full time job. On Monday alone we have: clinic appointment for labs, physical therapy, post-op surgeon appointment to check on her incision. Luckily all of these are near each other. On Tuesday she is scheduled for an EKG. She had one when we were in-patient the first time, just to get a baseline. Something else the chemo treatments can do is mess with one's heart. So they are checking her out now to make sure that everything is functioning normally. She will also have another one when she is finished with chemo treatments. Unfortunately she has to be sedated for this procedure. It's not painful, basically it's like an ultrasound, but she has to be very still. So, we're facing another six hours of not eating.

Yesterday one of the nurses asked me if I was happy with the care we have received at the hospital. I have to say that we are incredibly happy with the care we've received. The nurses and doctors have all been amazing and have gone out of their way (the nurses especially) to make sure we are well cared for. Of course every once in awhile we get a nurse that isn't so great, but mostly this has not been in oncology or clinic. And, we are very lucky with the primary oncologist that we have. I'm not sure how they decide which oncologist you get when your child is diagnosed, perhaps it's just whichever doctor is in-patient that day. There are about ten other oncologists, and we have seen most of them in the clinic (where they seem to rotate through doctors that see patients). While all of them have been competent and friendly, I'm really glad that our primary oncologist is who she is.

This picture was taken four months ago, during her first hospitalization. She's grown so much since then!


This is at six months old.




July 15, 2008

Today went much faster, only about three hours at the hospital.
Madeleine seems to be feeling okay, but is throwing up almost every time she eats. I started giving her some anti-nausea meds this afternoon, and so far so good.

July 14, 2008

waiting

Madeleine is feeling good after her chemo today. Hopefully that will continue.
We got to clinic at 9:45 this morning and didn't leave until 6:15 this evening. Madeleine and I got in to the treatment room right away and they took her vitals and blood work. We then waited a couple of hours just to get in to the room to wait for the doctor. Once in the room, we waited again for over an hour. UGh. We always have to wait, but it's usually not that bad. The doctor check was about five minutes and then we went back to the treatment room to wait for the chemo to be ready. Finally, at 3:30 the chemo was started. She received two different drugs today. Tomorrow we do it all over again but it should be much shorter as we don't have a doctor check, nor do we have to wait for labs. It's amazing how exhausting sitting and waiting can be. I'm wiped out. Madeleine on the other hand is babbling and laughing up a storm. I guess there are some things to be thankful for ;)

July 13, 2008

Lest you think we only stay inside





Chemotherapy starts again tomorrow. Not looking forward to it.

July 10, 2008

Results

The MRI shows that the tumor in her spinal canal hasn't really changed (which is good). There is still some tumor in her abdomen that the surgeon was not able to remove. The pathology from the surgery shows that the tumor is on its way to maturing, but not there yet. Neuroblastoma is strange because it does mature completely on its own given enough time. However, it also can do a lot of damage if left untreated because it can still grow.

Because the tumor in her spine is in such a sensitive area the doctor doesn't want to risk just letting it mature on its own and possibly causing more nerve damage or something should it start to grow. Chemotherapy will push the tumor to mature faster than it will if left untreated. So, we're looking at two more rounds of chemo. Not what we were hoping for, but I had suspected this would be the case. We are disappointed, but if she needs it, she needs it.

She will get chemotherapy on Monday, Tuesday and Wednesday of next week. After that we wait three weeks for her to recover and then she gets round two. During that time we will go to clinic once a week for labs to make sure that she doesn't need blood or platelets. She did so well with her previous four rounds that the doctor doesn't expect her to have any complications. After these two rounds she will get another MRI and we will go from there. Her urine will also be tested to measure the rate of maturation.

This treatment is a little bit like Grad school. It never seems to end, and you don't have any idea of when it will actually end.

July 9, 2008

Mad Clap

Showing off her mad clapping skills.

July 8, 2008




The MRI today went fine. The clinic wanted me to bring in a urine sample today since she just wouldn't pee when we were there last week. I collected the sample, but of course forgot to bring it with us. So, we took a second trip to the hospital this afternoon. The tumor puts out some chemical that is passed through the urine. The doctor is able to use this data, along with the MRI, to tell whether or not the tumor is maturing. I suppose we'll know all of that on Thursday.

Meanwhile, I keep getting a message on my computer that states that there is an unknown USB device plugged in. Wonder what that could be.





July 7, 2008

Physical Therapy

We had physical therapy today. It went well, they were able to give me some good exercises to do at home for her leg. Madeleine seemed to enjoy it as it primarily focused on trying to get to one exciting new toy after another. We have to go every two weeks.

Mad is getting closer and closer to crawling. She is trying so hard, and she's very determined to figure it out whether or not her leg is working properly.

Tomorrow is her fifth MRI. Fingers crossed that it shows the remaining tumor NOT growing. Shrinking would be ideal. We won't know any results until our meeting with the oncologist on Thursday.

July 4, 2008

Pictures


Madeleine makes ice cream at the cabin


Incision site


Humphrey is sad because he cost me $500 dollars at the vet this week. He promises to pay it back, but doesn't know how.

July 2, 2008

Weekend Wrap Up

We had a great weekend. We left early Friday morning and made it to Coarsegold in good time (six-ish hours). We visited Great Grandma Madeleine, and barbecued with Kyle and Karen. On Saturday we headed up to the cabin with Grandma and Grandpa. The cabin was a a lot of fun, even though Madeleine slept horribly and I ended up with a migraine on Sunday. We drove back to San Diego on Monday, which took over eight hours. Why does it always take longer on the way back? We're very tired of that drive.

Madeleine had a clinic appointment yesterday for labs and a doctor check. Her labs came back fine, and she looks good. We have a slew of medical stuff scheduled for next week though. Monday is physical therapy (I had to answer an intake questionaire with questions like, "does the child drool excessively?" Yes. "Does the child prefer soft food?" yes. Ha). Tuesday is the MRI, and Thursday we meet with the oncologist to discuss MRI results and whether or not she wants to do more chemo or not.

Mad is trying very hard to crawl. She can get from sitting to all fours, and then she rocks a bit. I imagine it must be difficult with a bum leg. I have to watch her closely now, I can't just put her down and expect to find her still sitting three minutes later. She is trying very hard to get into anything within a four foot radius. We haven't baby proofed anything, so I suppose it's good that she's not exactly mobile yet.

I have to take Humphrey to the vet today, he has a huge wound on the base of his tail that he keeps chewing on. He's very lethargic and depressed too. Ryan bought him a cone last night to stop the incessant chewing, and now he's just sad. Poor dog.