Procedure Day. Countdown is on.

So it was a big day. LAST Lumbar puncture, LAST time that Methotrexate was delivered into Mimi's spinal fluid.

She did not think of it as a monumental day, which I guess is how she has gone through most of the treatment she does everything that is asked of her and does it most of the time with a smile on her face. We waited quite a while for our turn to go to the procedure room but she kept busy coloring and reading.

Once we got into the procedure room, she got comfy with her purple blanket, stuck her finger up in the air for the O2 monitor, asked not to be surprised with the "white sleepy medicine" (propofol, she likes to know when it is coming) and she was out. I gave her a kiss and let the Dr. do his thing. Everything went well, I was called back to the recovery room to wait for her to wake up. She took one very long nap, over an hour after the procedure, we could not get her to wake up. Magi and Iza came with Daddy, when Magi leaned over to kiss her she woke up is was super sweet! Sisterly Love :)

We went to get some lunch since Mimi was pretty hungry at that point, pancakes were requested! And that is how we started out LAST 5 day steroid pulse (Dexamethasone)

Best Part of the day??? This script Below!

Mimi may have her port removed after 11/6/11!!! This one she is excited about! She really wants to have it out before her 7th birthday we hope we can make that happen!

Clinic Day.

Mimi and Iza left school a little early today and we headed over to clinic to check counts. Two weeks ago the three of them were a bit "monkey" so I left Magi at home to enjoy some Daddy time. At clinic everything checked out just fine, Mimi has a cough, which matches Iza's, but her lungs sound clear and she is not complaining of anything. Since her ANC is 2000 her weekly Methotrexate dose was increased to 100%.

I have noticed Sundays and Mondays have been a bit tough on her. She takes her weekly chemo on Wednesday, plus Wednesday through Friday takes a bigger dose of her nightly chemo. It catches up with her but she is one tough cookie Monday nights she runs laps around the soccer field during practice. She truly is an inspiration!

We celebrated today with a spontaneous Wednesday movie trip to see Dolphin Tale, now the girls want a dolphin as a pet...

Counts:
HGB - 11.5
Platelets - 222
ANC - 2000

Clinic Day.

Mimi had a quick clinic visit today just to check counts and adjust chemo dose. Her nightly 6-MP chemo is remaining at 75% and her weekly Methotrexate is at 75%

She is looking and feeling good.

WBC - 2.56
HGB - 10.3
PLT - 270
ANC - 1190

Clinic Day.

Just a quick finger prick blood draw today. To check Mimi's counts since she has restarted chemo, since counts came back okay her dose of her nightly chemo (Mercaptopurine) was increased to 100%. Her weekly Methotrexate chemo is still at 50% for now. She is feeling pretty good and bouncing back to herself, whatever this "thing" was it really tired her out.

Good counts + NO Fever = School!

ANC 1900

Clinic Day.

Also Day 16 of fevers. Crazy. Still no known source either. I haven't really updated since there has not been much change. I know everyone is trying to do everything to figure this Mimi mystery out and I am very thankful to have such a wonderful team of Doctors, Nurses and everyone else involved in her care.

I joked today and said "Maybe she is just teething!" That used to be my answer to everything from the time the girls were 3 months old until they were 2 years old. I have to joke otherwise I think I would likely just lose my mind.

Her counts are okay, Chemo has been restarted back after being on hold for the last two weeks. Which was also making me nervous. She received her monthly Vincristine through her port and will start on about 50% doses of chemo (Mercaptopurine and Methotrexate) We will see how she handles that. No steroids this month. She is feeling okay but her energy level and appetite is definitely lower. Although having two energetic sisters is like a little energy pill for her she keeps up with them for a bit but knows when to go and take a nap.

This afternoon she had an echo cardiogram done to see if anything might be found. She fell asleep during it so the technician was able to get some really good images. She falls asleep during every ultrasound I think it is the low light and the noise of the computer. We should get some results tomorrow. There are a couple of tests that were done for things like cat scratch disease, salmonella and a ton of others, some have come back and are negative others we are waiting on results. I have learned about a whole lot of viruses the past couple of days.

Counts 8/31/11

WBC 4.03

HGB 9.5

PLT 250

Neutrophil 2170

Neuropsychology Testing

Long day for Mimi today. At 8am this morning we met with a Pediatric Neuropsychologist, while Mimi went off to do some tests I spoke with the Dr. about her medical history, which was pretty clean until two years ago. Mimi worked hard until about 2pm with a couple breaks in between. She said she listened to stories and had to remember what they were, couple math problems, and some pattern making. She really enjoyed it and said she could have stayed longer. I will meet with the Dr. later on this month to discuss the results from today.

Why the Neuropsych testing? To assess the effects of treatment, mainly the Methotrexate (chemo delivered to spinal fluid) on the child's cognitive functioning. Children who have gone through treatment suffer from late cognitive effects from the chemo, having a baseline test done now will give us something to look at later on if any problems should arise.

Tomorrow will be another full day as Mimi goes in for a spinal tap in the morning. She was not very happy so she requested a great dinner favorite take out pizza from Italy's Best plus some friends and felt a little better about having to be hungry tomorrow. She also requested doughnuts after she wakes up from her sleepy medicine, we will see about that maybe I will surprise her.


Below are some articles that go more in depth about the testing in pediatric patients.

• Neuropsychological testing

• Intellectual, Neuropsychological, and Academic Functioning in Long-Term Survivors of Leukemia

• Feasibility of neuropsychological assessment in leukaemia
  patients shortly after diagnosis: directions for future
  prospective research
  

Clinic Day.

Mimi is a bit crabby lately due to her late nights and since she is keeping Iza up, Iza is also not in her best moods... it has been a flood of tears over nothing around here. Come to find out the antibiotic that she is on has "insomnia" listed as a possible side effect. Yepiee...

Counts are good. So up went her Methotrexate dosage., everything stayed the same.

Neutrophil- 1300

Clinic Day 3-1-11

Procedure Day for intrathecal chemotherapy (methotrexate). Everything went as scheduled, Mimi even got a foot massage right before we went down. She woke up shortly after the procedure, asked for a munchkin and off home we went. It is weird how routine these things have become, I still get knots in my stomach before she goes under, but it doesn't scare her she knows what the plan is and just goes with it.

Her counts were great ANC was 2200.

Oh and one more BIG thing. Mimi asked when will she be done taking chemo and the official date right now is November 6th, 2011. Seems surreal.

Clinic Day (January 5th)

Strange. I forgot to post.

All was well. Counts are continuing to be good so her weekly Methotrexate was increased. Mimi fell asleep while I had a conversation with her Onc. she woke up just in time to pick out stickers for herself and her sisters and go back to school for lunch.

Today's Counts:
WBC - 4.2
Hgb - 13.3
Platelets - 226
Neutrophil - 2500

Clinic Day.

What a day.

First counts are not awful but not great either. I guess the good thing is they have gone up since last week just not by much. She took her Methotrexate tonight (it is taken once a week unless counts are under 500) and se will also take her nightly chemo pill and I am hoping that her counts will continue going up. I am trying to think positive for her, she is really looking forward to all the fun starting on Friday, we all are.

Today's Counts:
WBC - 2.07
Hgb - 11.3
Platelets - 175
Neutrophil - 620

Iza has been "off" for the last couple of days. Just extra whiny and throwing some tantrums that I was really thinking we were done listening to. She has also been sleep walking and all of this is just NOT sitting well with me. To top it off she was in tears tonight saying her head hurt alot, five minutes later she was throwing up for an hour. Dan gave her a shower and put her to bed at 5:30. I hope she is all better tomorrow morning.

And of course Magi had to join the show today... She fell asleep at 5 on the couch I transferred her to her bed and so far she is still there.

Tonight for the first night since Mimi started Maintenance I am going to bed at 8pm setting my alarm for 10 to give Mimi her pill. I have a feeling I might have some early risers in the morning.

Oh and one more thing the tooth fairy is coming tonight for Mimi!

Clinic Day.

Long day at the clinic, but with some friends who are also waiting time went by fast. On procedure days the youngest kiddos go first, since Mimi was the oldest today she went last. She was a little anxious about getting anaesthesia but between making pictures and getting a "spa" massage along with her friend A she didn't have much time to think about it.

All went well during the lumbar puncture although she got upset right before she fell asleep, the anaesthesiologist thought he could just get the meds in her IV without her noticing but she got pretty mad. Not to self: Let her know it is coming...

It took Mimi forever to wake up, I always get so worried, finally I just sat her up and we talked about food and that got her eyes to open up. We got home right before 2pm and she slept until about 6pm. When she woke up she was mellow and complained of back pain and nausea. It is 9:30pm right now and she is just hanging out in my bed, I suspect she will be sleeping shortly.

Today's Counts:
WBC - 2.02
Hgb - 11.9
Platelets - 192
Neutrophil - 960

Today started Round 2 of Maintenance therapy (84 day cycles.) Same meds just increased doses, I am hoping for no count crashing or fevers, hope with me!

I just found this on my camera. A couple of days ago is was taken by a couple of cute five year olds :)

Clinic Day. Sunny Day.

This morning was a count check, since last week ANC (neutrophils) were at 290 which put her daily chemo pill on hold. Today ANC was not great but high enough to continue her MP6 (Mercaptopurine) and weekly dose of Methotrexate.

We also went over to get an x-ray. Lately Mimi has been complaining of her heel hurting, it does not effect her "monkeyness", but she does complain and I have also noticed she walks and runs funny. I will call in the morning tomorrow to get the results from the x-rays.

On the way home she asked "So, how many neutrophils do I have today?" I told her and she replied "Oh 900 is more than 290! so that is good, so I have to take my pill at night right?" Mimi hears the nurses and doctors talk about numbers and it amazes me how she listens and remembers all the information.

After clinic today we went to a park and she ran around keeping up with her sisters and friends but was wiped out on the way home!

Today's Counts:
WBC - 2.2
Hgb - 12.5
Platelets - 150
Neutrophil - 900