Wednesday, December 7, 2011
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!
WBC - 8.
HGB - 12.8
Platelets - 223
ANC - 3700
Saturday, December 3, 2011
Friday, December 2, 2011
Wednesday, November 30, 2011
She has known that once she no longer needs chemo the port will come out. She also always said she wanted it out before her 7th birthday. We met with the pediatric surgeon and although he wanted to wait until after her birthday, so she won't be sore for her birthday, she insisted she wanted it before.
Tomorrow, December 1st, Mimi is scheduled in the operating room at 11:30am. She will go under general anesthesia and the surgeon will try to use the same incision they used to insert the port, for minimal scars. The surgery itself should not take more than an hour. Mimi is hoping to keep her port read below to find out why...
"My Port" by Mimi, almost 7
Tuesday, November 22, 2011
Thank you UMass students for a great fundraiser and letting us be a part of it and have so much fun doing it!
Friday, November 18, 2011
The girls with Betsy.
Thank you for such a great Art Show for all the artists, and for healing with art every day.
Wednesday, November 9, 2011
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...
Sunday, November 6, 2011
What now? Starting November 9th Mimi will be going for monthly blood draws to make sure her blood counts are what they should be and that there is no evidence of cancer cells. Later on they will be bi-monthly until eventually once a year for the rest of her life. Along with other routine check ups such as Echo cardiograms, to check her her heart for possible damage caused by chemo.
Monday, October 31, 2011
Happy 4th Birthday Magi!!! You are our little Treat :)
Tuesday, October 25, 2011
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!
Monday, October 24, 2011
Miss Magi wished to go to Bronx Zoo for her birthday (which is coming up on Halloween!) and that is what we did this past Sunday. It was a great trip with Babcia and Dziadziu, we all enjoyed a gorgeous fall day outside. Tigers were on top of the list for a favorite animal, Prairie dogs were most fun, and the skunk got the most reaction out of them, go figure! The Bronx Zoo is enormous, we were there for about 6 hours and did not see everything but not to worry we are now members of the Zoo so we will sure be back to see the rest of the zoo!
Wednesday, October 12, 2011
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...
HGB - 11.5
Platelets - 222
ANC - 2000
Monday, October 10, 2011
Striking a pose while taking a rest in the shade.
Monday was another nice day we spent with friends at Forest Park feeding ducks and running around. The running continued at soccer practice. All three girls were sound asleep by 7:03 pm, I say it was a GREAT weekend!
Thursday, September 29, 2011
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...
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.
Wednesday, September 14, 2011
She is looking and feeling good.
WBC - 2.56
HGB - 10.3
PLT - 270
ANC - 1190
Saturday, September 10, 2011
The Littlest Soldiers
The medals on our chests
Are port-a-caths for meds
Helmets won’t stay on
Cause no hair is on our heads.
Our weapons of destruction
We take every day
We fight the battle within us
While we struggle on to play.
We fight with honor and courage
No marine could do as well
We are only little children
Living in this hell.
So bring on the medals
The Purple Hearts of Wars
The Gold Cross, The Silver Star
To place upon our scars.
For We are the Children of Cancer
No one has fought so hard
But every day we struggle on
Our LIFE is our reward
Friday, September 9, 2011
Iza and Mimi are officially 1st graders! Above are pictures from their 3rd day of school. It rained the first two days and we were all still getting used to getting up early. So far they are loving school and I have not heard any complaints. Mimi was scared to go back to school, she was nervous about getting sick. She understands more than she ever did before, she knows getting sick lands her in the hospital.
The weather turned out beautiful on Friday so we set out on a spontaneous art filled adventure with some friends from school. A local college was holding a Family Art Night, the girls created abstract art from cardboard, it was really fun! Above the streets we saw a couple of hot air balloons that took of from a park near by. We walked around the galleries and searched around for some amazing sidewalk chalk art. Below are some of our favorites.
Later at night on the way home we drove to Look Park to see if the hot air balloons were still there. We drove in to the dark park and out in the field balloons were lighting up one after the other. It was amazing to watch. It was a great night!
Wednesday, September 7, 2011
Good counts + NO Fever = School!
Friday, September 2, 2011
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.
Wednesday, August 31, 2011
Sunday, August 28, 2011
Mimi left the hospital Friday with no fever, two hours later she got a fever. I called the clinic thankfully Tylenol was okayed and we were able to stay home unless things got worse. She was running between 99 and 101 all Saturday but acting totally normal. Sunday (today) she was just hanging out but looked flushed sure enough 102. Instead of getting admitted we went to the ER to get counts checked and if they were low we would stay overnight if not we go go home. Her fever got higher (103.4) but came down with some Motrin and Tylenol. Counts came back and they were good! Mimi colored some pictures while she got Ceftriaxone the IV antibiotic and then we were off on our way home. This was a super fast ER visit, 4 hours!
WBC - 4.9
Hgb - 10
Neutrophil - 1540!!!
On Friday Mimi's CRP was 8 today it was 4.
CRP (C-Reactive Protein) A high or increasing amount of CRP in your blood suggests that you have an acute infection or inflammation. If the CRP level in your blood drops, it means that you are getting better and inflammation is being reduced.
Thursday, August 25, 2011
Pretty much most of Wednesday Mimi's temp was between 100 and 101, ANC is near zero, meaning nothing to fight infection with. I made the call and we were admitted. It is not safe for her to be at home since things can go bad fast and it is still unknown what is causing these fevers. In the hospital she is able to receive stronger IV antibiotics. We got admitted right before 7pm. With the plan to start investigating first thing in the morning. CT scans were ordered for her sinuses, chest and abdomen. The CT scan was to be done with contrast dye, but to get a better picture the dye needed to be injected in her vein rather than her port. So she had to get an IV in her arm, she didn't like it but was a pro! She also drank a "poison" tasting drink before the scan and received another Neuprogen shot. She kind of went through a lot today. We have not gotten any results back yet. But I do know some of her counts have started to come up.
If we were NOT at the hospital tonight we WOULD have been singing our hearts out at the Selena Gomez concert in Boston with Auntie Meg and Eryn. But that was not the case. Some of the awesome doctors, nurses, and child life heard she was going to miss the concert and made some magic happen... Before lunchtime the phone rang, it was a call for Mimi. She was confused at first then just speechless when she realized Selena Gomez was on the other line. It was so awesome of her to call it made her smile. they chatted for a couple minutes and she was so excited to call her sisters to tell them all about it. Iza immediately asked if Justin Bieber was with her also. We were already big fans of Selena but now we HEART her even more! We will be sure to go to one of her concerts next time she is around and I am sure Auntie Meg and Eryn will join us!
Tuesday, August 23, 2011
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.
Saturday, August 20, 2011
Thank you for all the sweet messages, prayers and love <3
Friday, August 19, 2011
This morning at 8am it was SO nice to see her smiling face asking for her Lucky Charms, a rare treat. Uncle Victor just came to drop the girls off and they are all chatting away. Love these monkeys!
Not sure of the plan today but soon we will find out... I will update when I know. I am pretty sure we will be here tonight since these fevers keep coming every afternoon. Thank you for all the love & prayers!
8/18 - WBC 1.6
8/19 - WBC - 2.6
ANC - 2300
1pm. During a craft before lunch she spiked a fever of 103.2 with a headache and a blotchy rash on her neck. She got a dose of Tylenol with Codeine, once that kicked in she is feeling much better.
5pm Fever still here, headache came back, she vomited (probably due to Tylenol/Codeine) so the "big guns" came out Morphine along with Zofran and Tylenol. She is resting comfortably and said her head doesn't hurt as much.
Wednesday, August 17, 2011
All the girls were here playing this afternoon, doing some painting and playing out on the playdeck. We were also keeping child life hostage in our room, Thanks Betsy! Magi left with Daddy while Iza and Mimi had some quality time snuggling and watching Pippy Longstocking.
6:15pm Fever still here. Tylenol is not doing what it is suppose to...
Tuesday, August 16, 2011
This morning she woke up and was quick to request Fruit Loops and pancakes. So she is feeling much better but we are here for another night. Random fever means waiting 24 hours for blood cultures to come back. Her liver enzymes are also elevated so that is being checked out.
Iza and Magi are playing with their friends, Thank you Jess for taking the monkeys. They will probably come by later tonight. Mimi has painted pictures for them, now she is watching Soul Surfer the movie she missed last night.
We had a wonderful time at Camp Sunshine last week I will update out vacation with pictures later this week.
Sunday, August 14, 2011
The girls out on the porch enjoying the fresh Maine air.
Wish boats. A special night at Camp.
Tuesday, August 2, 2011
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.
WBC - 2.3
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 :)
Monday, August 1, 2011
This past weekend when all the girls got sick I was glad all of them were the same kind of sick, but I flash-backed to two years ago when they were all sick the same way but Mimi was just worse off. I guess the good thing is Mimi doesn't really remember much about the worst of it. I hear Iza and her talk sometimes about the first inpatient stay when we got her diagnosis: "remember when your butt hurt and you went to the hospital", "we got to cut our hair" and about "all the mail that came to the hospital" they don't remember Mimi's screams from pain that required morphine to be administered around the clock, or me crying all night every night not knowing what the future held. They can have the pink and fluffy memories, I will take all the bad ones!
Alot of these thoughts came tonight as today we found out our friends' daughter is in the hospital awaiting further results to find out what type of leukemia she has. My heart breaks for them as they start this fight but I know that little girl will fight and kick this thing in the butt! Please keep this little girls in your prayers tonight.
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.
Friday, July 29, 2011
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.
Monday, July 25, 2011
Please read the Article below:
Childlife specialists ease the trauma and pain of a sibling in the hospital
Thursday, July 21, 2011
ANC - 1000
Saturday, July 16, 2011
Friday, July 15, 2011
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!
Sunday, June 12, 2011
50 + members joined our team and helped to raise money while having fun at the park.
We got up bright and early got on our purple sock monkey tees, socks, bandanas and whatever else purple we had. Purple umbrellas were also packed since the weather was a bit iffy. We got to the park and joined our team members, it was so great to see everyone! I wish I was able to talk to everyone more and thank them for coming to support The Purple Sock Monkeys. The miracle children were given giant red buttons so everyone could identify them as a miracle child and at the end of the walk they were given a medals of honor. Check you the Video Six Flags posted on their Facebook page, you can spot some of us!
Frito Lay Northeast Region Employees Fundraiser
Phonon Corporation Employees
Balise Lexus Employees
Below are registered walkers, Thank You for getting up early in the morning and supporting a great cause. We hope you had fun!!!
Friday, June 10, 2011
Today (6/10) Mimi stayed home in the morning and we met with a respiratory therapist RN . Mimi was a bit anxious and not looking forward to her treatment but all that anxiety pretty much dissapeared about five minutes after she met Respitory Rick, she was chatting up the storm asking a million questions. We went through all the necessary paperwork, her vitals were checked. He explained to her what he will do she listened to instructions and followed them like a pro! First she used the albuterol inhaler, it works by relaxing and opening the air passages to the lungs. Then an oxymeter was hooked up to her earlobe to check her oxygen level and pulse, Pentamidine can drop oxygen stats. She used the nebulizer to breathe in the Pentamidine for about 25 minutes. Since the medicine is a mist she is breathing in and it is also going into the air in the house we wore mask but Magi spent some time upstairs so she was not exposed to the medicine. Her treatment went smooth we said bye to our new friend until next month and back to school she went!
Wednesday, June 8, 2011
Clinic went well, today was Vincristine day so Mimi got her port accessed blood drawn and chemo administered. We discussed her recent headache (Tuesday morning) She seems to have random headaches that do go away when she rests. All her counts came back good, she looks and feels fine. Today we start steroids, so I will be keeping Magi and Mimi away from each other...
WBC - 2.4
Hgb - 11.0
Platelets - 203
Neutrophil - 1400
Thursday, June 2, 2011
Crazy is also one of the words to describe yesterday's weather happenings. It was hot, humid and unbearable, with warnings and alerts of tornadoes, that I am sure a lot of people dismissed at first. Tornadoes is not something we worry about here, snow storms are more our thing. When I came home around 4:20 everyone was cranky due to the heat. We decided to go out for dinner to support “Allie’s 5 O’Clock Fund” Right before we were to leave My mom called to put the TV on, I could not believe what I was seeing, live coverage of a tornado going through the highway and crossing over to downtown Springfield which is just miles from our house. We made sure everyone we knew in that area was okay. It looked like the weather seemed to calm down, so we did go out to dinner, sounds silly now. The weather got bad again we waited it out while eating dinner, the kids were distracted enough in the loud restaurant that they did not seem too scared at the time. When we returned home and everyone had a hard time falling asleep, including me thinking of our friends who were effected by the tornado.
Wednesday, May 25, 2011
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!
WBC - 5.5
Hgb - 11.9
Platelets - 218
Neutrophil - 3700
Sunday, May 22, 2011
Mimi has had a "blah" week... A whole lot of nausea, belly aches, and just being tired. All week she has been taking anti-nausea Zofran pretty much around the clock. On Friday I got a call from school that she was not well, when I saw her I thought "Here goes the weekend!" But the sun came out shining and Mimi woke up Saturday morning totally fine and ready for fun! We headed East on the Mass Pike to visit Auntie Tracy. Yummy lunch in the sun, feeding ducks, geese and seagulls, movies and a sleepover. Sunday we went to the Museum of Science in Boston, we can't wait to go back and see the rest of the museum. A visit to see our favorite people in Boston was a perfect way to end a great weekend. Happy Birthday Eryn!
On a side note, I am not sure if Mimi has some kind of a milk sensitivity/intolerance. I have been noticing she doesn't feel good shortly after she has milk and this weekend she did not have any and did not have any stomach related issues. I am not sure if it is just a coincidence... I will see how this week goes.
Friday, May 20, 2011
All proceeds from the walk will benefit Children's Miracle Network Hospitals which Baystate Children's Hospital is a part of. Every dollar donated will go directly to your local Children’s Miracle Network hospital to support research and training, purchase equipment, pay for uncompensated care and more; all in support of our mission to save and improve the lives of as many children as possible. Fundraising will help support things like research, pediatric education training programs, cutting-edge equipment, and uncompensated care for families right in your backyard.
We will be walking in support of Mimi who has been a brave little monkey just going with the flow of whatever she is asked to do as far as treatments and medicines go, never asking why. Iza and Magi who are Super Sibs and help out when Mimi is not feeling great or is in the hospital. This year the girls' friend Adrianna will be walking with us, we will celebrate her bravery and recovery.