Treatment Tree

Mimi had her monthly clinic visit after school Wednesday, all five of us went, we like to add chaos to everyones work day. The girls love going to see everyone at clinic. Mimi is well, not much to report, still dealing with dry skin and scalp but we got it under control with creams and shampoos. Hopefully when it starts getting nice out it won't be such an issue.

Counts 2/8/12
WBC - 5.3
Hgb - 13.3
Platelet - around 200
ANC - 1900

While at clinic got a wonderful surprise from Lisa (nurse) she gave Mimi a gem Tree filled with a collection of Swarowski crystals. Each bead representing a procedure or event while at clinic, such as beginning treatment, transfusions, port access, surgeries and so on. It is a gorgeous tree representing each child's unique journey through treatment. A big thanks to Griffin's Friends for sponsoring that and to the nurses at clinic for putting their love into it!

Mimi's Treatment Tree

Good Counts = Earrings!

After school today Mimi had her monthly clinic visit. It was funny on the way there she asked me if she could just do a finger blood draw... until she realized that her port is not there anymore. Over the last month she had random headaches, some achy legs in the morning and sometimes I might have a mini panic attack but I realize she is just more aware of her body than an average seven year old. I can also relax by tracking back the leg aches to playing Just Dance on the Wii. One issue she has been having since her port has been out is rashes, very itchy all over her neck and upper torso. I guess according to some cancer moms it is not uncommon to have rashes off treatment. Her pediatrician decided to treat her for scabies, although it didn't really look like it, but it seemed to calm down. Now she has eczema all over her hands and arms, Iza has had it before also I am pretty sure if it wasn't for the steroids that Mimi has been on for the last 2+ years she would have had eczema sooner. We can deal with eczema.

So... never boring around here!

Counts came back GREAT! Mimi was quick to ask "So NOW can I get my ears pierced???" Answer was yes so we headed over to the mall to do just that. The woman doing the piercing was really nice explaining to her that it will be a needle going through her ear and it might hurt a little, to which she replied she isn't afraid needles. This was a "fun" poke for her! She picked out super cute magenta flower earrings.

WBC - 7.2
Hgb - 13.1
Platelet - 204
ANC - 2900

A Thanksgiving Hike

Clinic Day

I picked the girls up from school and informed Mimi she has a clinic appointment right after. She replied with a loud "Why?! I am done my port is out!" I told her we are just going for a finger prick to check her counts, again "Why?" To make sure your blood is doing what it is suppose to, we will got every month for a while. She seemed okay with that answer but then said "If it doesn't look okay then I have to get a port again? and the hospital?" Iza jumped into the conversation and said "We will just pray and wish your blood is always good!" Yes! Yes, We will!

Mimi has developed a rash sometimes hive looking the day after surgery which seemed to get worse over the weekend but after a visit to the pediatrician's office and a script for Hydroxyzine it seems to be under control. Her stitches look great, they are dis solvable do we don't have to go to get them removed. Everything checked out well so we are good until early January!

Counts:
WBC - 8.
HGB - 12.8
Platelets - 223
ANC - 3700

First OFF Treatment Clinic Visit.

We had so many lasts but today was a first post treatment visit. Just a quick finger prick, some chatting, hugs and smiles from our favorite clinic friends while we waited for counts to come back. I mentioned Mimi's day of nausea last Tuesday although it was all better the following day. It might have been just something random that resolved on its own.

After clinic the girls ran around with some friends and enjoyed the really nice weather at a park. Alot of parks around here are closed due to all the trees that are down after the Halloween Snowstorm. Mimi was complaining of a headache while playing, it must have been pretty bad because when we got home she skipped her favorite dinner and fell asleep before 6pm, I am really hoping she is just tired and this is not a start of something...

Today's Counts:
WBC 2.34
HGB 11.0
Platelets 187
Neutrophils 1250

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

Routine Clinic Day.

We have been keeping quite busy the last two weeks. The fall season started with some summer heat and we made sure soak in all the sun before it gets too cold! The girls have been playing and loving soccer, it is so great watching them run around and enjoy being on the team. Miss Magi has started a mini pre-school just one day a week for a couple of hours but so far she loves it, her and her buddy Norah are now Big Girls!

Mimi was due for her monthly Vincristine today so she got her port accessed, blood drawn, chemo given. Mimi was seen by the PA, everything looked good, no complaints. She also mentioned we only have one more Spinal Tap before is off treatment! This is scary and exciting all at the same time...

Counts:
RBC 10.4
ANC 1800

Since I had all three very giggly girls with me I don't remember all the counts because I ran out of there pretty quickly. I did receive a phone call later on that day to increase one of her chemo doses to 100%. Mimi also started her Steroid week. She was an emotional a mess tonight, she was just sobbing over everything but decided on her own to go to bed early, she is currently sleeping in my bed.

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

Mimi DOESN'T have Malaria.

In case anyone was wondering...

Hoping I am not jinxing myself here but fevers have not come back since Wednesday night. I even replaced the batteries in the thermometer to make sure it is working and that the 98.0 reading was correct.

Results from Wednesday's echo cardiogram came back normal. Her heart looks great.

Thursday was another busy day. We started of the day in the Nuclear Radiology department where Mimi received a nuclear injection and about three hours later we were to come back for a nuclear bone density scan. I had all the girls with me, which made Mimi happy to have her sisters with her. They were full of questions to the technician who was really good at answering them all. The scan itself took about 20 minutes, Mimi had to be very still. She did an awesome Job! We looked at the images after and thought it would have been great to get a print out of Mimi's skeleton for Halloween but unfortunately they don't do that. During the three hour wait we went for an appointment with the Infectious Diseases doctor (which really sounds worse than it is) she went over the last two weeks with me, and told me about all the tests that were done on Mimi all of which came back negative. She decided to test for some more one of them was Malaria, highly unlikely but at this point why not just check for everything. I just hope they are GONE. Her counts took a slight dip, probably due to chemo. Her CRP (C-Reactive Protein) is 4 down from 5, so it is going in the right direction.

We might not ever know what caused these high fevers for so long. Hopefully all the WORSE case scenarios were ruled out and this does NOT happen again.

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

Home with Fevers and Neutropenic.

We have been home but Mimi definitely has been tired from whatever has her getting fevers. Sunday she had a fever off and on but was able to sleep.

Monday 8/22 morning we went to clinic in the morning, she seemed okay but a thermometer showed otherwise... 101.3. Her counts also dropped Her ANC 60, not a typo sixty. Platelets and Hgb were pretty normal for her. It was decided to plan on bone marrow aspitation for the next day, to make sure nothing is being missed. Since it was a gorgeous day I drove to the girls' favorite park instead of letting my thoughts get to me. Watching them have blast with friends while feeding ducks was quite therapeutic. No eating after midnight and no breakfast the next day meant large cheese pizza was ordered from the girls' favorite place. They also got to stay up late reading books with Auntie Meghan.

Tuesday 8/23 We waited to last minute to wake Mimi up, that way she doesn't have to think about the sleepy medicine. No fever at clinic, it was so nice to see 98.8. But her counts did not look so great WBC was only 0.99. I am pretty sure that is the lowest it has been. The bone marrow aspiration procedure went as planned, we should hopefully know preliminary results on Wednesday. When she woke up from anasthesia, she received an injection in her arm of Neupogen which stimulates white blood cell production. I hated seeing her cry. When we got home she was a bit sore from the procedure but played some games and read with her sisters. Later at night she spiked another fever, I called the Onc. on call and gave her Tylenol with the instructions that if it gets worse or fever doesn't go away to call back. That was a couple of hours ago, so far Mimi is sleeping fever free.

I will try to get some sleep and stop thinking. I am going to bed hoping and praying her counts bounce back and fevers go away.

• Mild neutropenia (1000 <= ANC < 1500) — minimal risk of infection
• Moderate neutropenia (500 <= ANC < 1000) — moderate risk of infection
• Severe neutropenia (ANC < 500) — severe risk of infection.

Clinic and Procedure Day

Mimi got her port accessed, blood drawn, and monthly Vincristine administered. She got examined my a med student and Dr. L, other than this lingering junky cough and random knee pain (I think six year old random) she looks and sounds good.

Phone pic: Mimi and Bailey right before sleepy medicine...

Then we waited to be called down for the procedure, lumbar puncture with inrathecal chemotherapy. We waited quite a while before another little kiddo went before Mimi, she got a bit nervous (so did I.) No matter how many times you do this it is always scary when you think about it, your child laying asleep while a giant needle goes into their spine... She did go in around noon, poor thing was starving, everything went fine. She was awake ready to come home, yes with a stop for a dounut. Although she is so wiped out that she wants to cuddle and is sitting on the couch with her sisters looking at her long awaited treat... We will just chill out at home and take it easy today.

Counts:
WBC - 2.3
Hgb 10.9
ANC 1300

Please keep our friend's daughter in your prayers as she starts her battle with leukemia with a huge army behind her! Mimi made sure she had something purple with her today :)

One puke... Two puke... Three puke...

That was our night last night. Iza started the night not feeling well, Mimi advised her on what to do when she is feeling nauseous. Poor thing was running to and from the bathroom with a bowl. Shortly after midnight Magi woke up came out of her room and said she needs a new place to sleep since she has puke on her bed, and apologized for not knowing she was going to get sick. So far at 2 am I was hoping this will all magically skip Mimi. Not so much, 3 am she was right in the bathroom with her sister by her side accompanied by a fever... I made the phone call to the PA on-call. I was VERY thankful for not having to go into the hospital in the middle of the night, while two other kiddos are sick at home and needed me.

So no one has really slept last night, everyone is camping out on the living room floor in of the TV. Mimi and I will head over to clinic in a minute so she can get her counts checked, blood culture done and receive some antibiotics.

Update: Back from Clinic. Mimi got an antibiotic (Ceftriaxone) Her counts came back really good so we got to go home and relax. She still had a slight fever while at the clinic but since everyone has it here we know the cause of the fever. It is an over cast day so we will all just relax at home and re-cooperate after not sleeping all night.

Counts:
WBC 4.8
Neutrophil 3800

Clinic Day (yesterday)

I had to carry Mimi into clinic yesterday she said her stomach hurt again. No temp, counts were okay, although ANC was a little on the lower side for her. She has had a lingering caugh for over a week not it has gotten junky in the last two days, as a precaution Mimi got a chest Xray, I have not heard anything back from that yet but usually no news is good news. Later that afternoon she was acting like her regular bouncy six year old self.

Counts:
ANC - 1000

A Rather Lengthy Update.

We have been quite busy with fun summer happenings, work, plus our computer at home is being invaded by viruses so it has been hard to get around to update.

Since the last update Mimi was having a lot of stomach issues with every meal, so mid June she started Famotidine (acid reducer) daily and it seemed to help significantly. She is able to finish meals rather than before she would take a bite or two and not be able to eat complaining of stomach pain. She is also still staying away from milk and using Lactose free products.

June 22 Clinic Day. Counts came back pretty good and there were no issues to report or changes made to does of chemo.

July 1st Mimi helped out Dr. G with teaching new residents. She was "modeling" for a "fake" spinal tap (her words.) On a hospital bed and was positioned and prepped for a Spinal puncture, minus the needle and the anesthesia, after Dr. G did his part of explaining, each resident felt Mimi's spine and prepped for the procedure. The were all very nice and thanked her for letting them move her around. She really enjoyed it and later told me she though it was neat that now she knows what happens while she is sleeping.

July 6th Clinic Day. Counts were good, she received her Vincristine through the port and that night started the steroid pulse. It was a rough couple of days, she was very moody, there was a lot of book reading in separate corners but we made it.

July 12th Unscheduled Clinic Visit... Over the weekend Mimi was compaining of stomach pain, which usually comes with steroids but on Monday night through Tuesday morning she did not sleep and was getting progressively worse, around 7am I called the clinic. Never any fever at that point. In the morning I took her and her sisters to clinic to get her checked out, she was miserable. She was sleeping and not amused by anyone which is NOT like her, I knew she was not well. Dr. R thought 1-appendicitis 2-constipation 3-UTI. We stayed at clinic for about 3 hours she got fluids and we waited for blood and urine results, I was so proud of Iza and Magi they were so good sitting and quietly entertaining themselves while Mimi slept. At noon we went over to the main hospital for an ultrasound to check out the appendix, at that point Dan came and took the girls to get them a snack in the cafeteria. Mimi slept through most of the ultrasound which was reasuring that the pain went away and her appendix was just fine. Later we got a script for 10 days of Ciprofloxacin and and her symptoms went away within 24 hours. She was well enough on Friday to be a dare devil with Iza at Six Flags!

SUN is here! Clinic Day

It was so nice to be out in the hot sun today! I hope this weather is here to stay a while.

Mimi had a clinic visit today, Iza was very excited to accompany her sister. Everything checked out pretty good. I am pretty sure that she in fact is lactose intolerant, I am blaming it on chemo. Since she stopped having milk she has not once complained of feeling pukey or having any other GI issues. It is so nice to have a happy kiddo back!

Counts came back fine, neutrophil count was on the higher side so her MP6 (Mercaptopurine) nightly chemo pill dose was increased. It has been long since she has been on 100% of her chemo dose, I just hope her counts don't go crashing down. Think Positive!

Counts:
WBC - 5.5
Hgb - 11.9
Platelets - 218
Neutrophil - 3700

Clinic Day

Counts have gone up since the weekend ANC went back up to 1300 so of to procedure (spinal tap, intrathecal chemotherapy) we went. Mimi was not overly happy about the sleepy medicine but handled everything like a champ. As always took her a while to wake up, but once she did she wanted food, a warm blanket and to go home.

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

Happy Easter and a Quick Update

The new antibiotic (Atovaquone) seems to be okay... I think. Mimi is able to keep it down and has not had any issues with it. I say I think because she has been somewhat more tired since she has been on it and on Thursday right before lunchtime I noticed a rash allover her neck, chest and some on her arms. So to clinic we went all of us, all three monkeys, the girls got STRICT instructions on not acting nutty and thankfully followed for the most part. Oh as far as the rash we don't know what it was, just another weird Mimi thing. The concern was chicken pox, but her rash/spots went away by Friday night, and hopefully will just stay away.

This week was school vacation week and although I had to work most of it we were able to squeeze lots of fun in and see some friends we haven't seen in a while. It has been a rainy and chilly week but perfect for plays, movies, mall and lots of crafts. The girls did lots of egg painting and coloring as well as eating...

Happy Easter!
Szczesliwych Swiat Wielkanocnych!!!