Monday, December 28, 2009
"I WOVE IT'S CHRISTMAS" says Magi as she looks at her big sisters opening and playing with their new presents.
"We love christmas ALOT ALOT TOO!" Iza and Mimi yell.
"WHY SANTA EAT ALL COOKIES!?" because there were alot of cookies on that plate and Magi does not like to share her Auntie Mina made Chocolate Chip Cookies.
"We left them so he can have energy, just like Phineas and Ferb" LOL again explain the big sisters.
"HE MADE MESS!" Yes. Yes he did there were boot prints on the floor near the tree.
"He was in a hurry because he had to go to see all the other kids" More words of wisdom from big sisters.
That is how our Christmas Day started, in PJs the five of us all day long playing and hanging out at home, most important ALL of us at HOME.
Mimi has been feeling pretty good, she does have a caugh but her chest x-ray was normal, she had her counts done on the 23rd and they were good (I don't have the numbers in front of me) she goes again Thursday the 31 to start new cycle of chemo.
Thank you to everyone who has sent Mimi and her sisters Christmas Mail, as always she loved it. Thank you for amazing SANTAS you know who you are :) you forever hold a special place in our hearts. Hugs Kisses and Blessings to everyone.
"We WOVE you, and we WOVE Christmas!"
Wednesday, December 16, 2009
WBC - 5.0
Hgb - 11.7
Platelets - 174
Neutrophil - 2200
They girls have enjoyed the first snow of the season quickly followed by hot chocolate and comfy clothes.
A visit to see Santa at his magical workshop.
Lots of Christmas related crafts and projects, so far our favorite was dough ornaments, they even taste good according to Magi... we will just have to take her word for it.
Yes that is a prince, shoe, a wand, and a carriage. Auntie Mary recognize these?
We followed this recipe The bonus: It was almost NO cleanup, thanks to some great Elmer's Paint Pens from Auntie Stacey.
Saturday, December 12, 2009
Tuesday, December 8, 2009
She was nervous about getting the "sleepy medicine", I (lied) told her it is a different one, which seemed to work because she did not get too worked up about it and fell asleep peacefully. The clinic's mini laptop that she got to play online with before her procedure might have also helped. Last couple of times when I watched her gag before she was asleep, it was awful to watch. She got Vincristine and Methotrexate (intrathecal administration, Spinal Tap).
She is a little nauseous and tired so it might be a "snuggle and read a book in the big bed" kind of a day.
WBC - 4.9
Hgb - 11.9
Platelets - 192
Neutrophil - 2200
Wednesday, December 2, 2009
During our last stay in the hospital this CD came in the mail, talk about perfect timing, Mimi LOVED it she listened to it a million times and so did every nurse and doctor that walked by her room. All three girls dance to it regularly and sing it often. It is a catchy tune so you might find your self singing it too!
I did the slide show to the music, one day when I have some time (ha ha ha) I hope to do a better one.
Please check out their website Songs of Love! They do an amazing job cheering up kids as well as their families with music.
Tuesday, December 1, 2009
I love it all and I am thankful for every day of the last five years.
The sleepless nights of double colic babies, synchronized naps and nursing times, endless giggles, Hugs, 9 month old runners, Hugs, "Capu Capu" Time (aka bath time), Diaper heads, finger painting, wall painting, self painting, Iza's MEAN face, Mimi's numerous silly faces, Hugs, Tea Parties, Hugs, Being Princesses, playing with Princesses, watching Princesses, daily adventures, Bubbles, tantrums (yes I even love those), couch time with two and now three... I can go on for hours and pages.
Happy Birthday Girls!!!
I can't wait to kiss you in the morning!!!
Friday, November 27, 2009
Her counts were fine so she got the IV Vincristine and Methotrexate.
WBC - 4.1
Hgb - 11.3
Platelets - 236
Neutrophil - 1300
Mimi will be going back to the clinic in 10 days (AS A FIVE YEAR OLD!) but this time Mimi will be getting the "sleepy medicine" Methotrexate (intrathecal administration, Spinal Tap) and Vincristine.
Thursday, November 26, 2009
- Melody Beattie
Tuesday, November 24, 2009
Mimi looked good and her cutures were all still negative so we got the okay to go home before lunch, of course it takes a while to discharge so we did not leave until a bit after noon.
We left with a script for Benadryl due to the allergic reaction Mimi got to the tegaderm adhesive. Her chest looks awful, red and blistery, she is also complaining of it being itchy. The nurses did find tape today that will (hopefully) work for her and gave me an extra on incase we go somewhere and there is none avaiable.
Her counts looked good on Sunday but dropped significantly today, her Onc. gave her the okay to go home today since she is due at the clinic on Friday anyway. I am hoping for a UNeventful and ThankFUL Thanksgiving at HOME.
Counts - 11/22 - 11/24
WBC - 6.1 - 4.1
Hgb - 11.2 - 12.1
Platelets - 192 - 158
Neutrophil - 3500 - 1300
Night-Night with Sparkles at the hospital.
Drinking her tea and watching TV, I love the new yellow walls in the children's hospital rooms.
Monday, November 23, 2009
Her only complaint is her itchy port, she has been getting a rash from the tape (tegadrem) they use to hold her port in place. One of the nurses last night changed her dressing and used a barrier between her tape and her skin and it seems to be better although her skin is irritated from yesterday.
As far as I know we will probably be staying another night unless the Docs decide otherwise.
I am home with Monkey Magi and Monkey Iza while Daddy and Mimi watch a movie at the hospital. I will head back over there in a bit.
All is looking well, Mimi's cough is better, her counts look good... She does have to stay the night since they are keeping her 48 hours to "grow" the blood cultures. She is happy we got to do some fun crafts, read some books, she found a student nurse who let her play hair dresser on her hair, she got to listen to a song made JUST for her from Songs of Love. I will try uploading it here for all to hear. So if all continues as it is, we will be home tomorrow.
Sunday, November 22, 2009
I will update when I know more...
Monday, November 16, 2009
Counts were good:
WBC - 5.2
HGB - 12.4
HCT - 34.9
Platelets - 189
Neutrophil - 2000
When I got home with Mimi I left her at home and took Iza in for a rash on her hands that is for now being treated as eczema, since we were there she also got CBC (complete blood count) done. She was a rock star, and did not even flinch as her blood was taken!
Fast Forward to tonight... She took a two hour nap before dinner. Nausea kicked in for Mimi. Poor thing really wanted chicken quesadillas for dinner she has been asking for them since breakfast. She could not keep any food down. Zofran (Ondansetron) did not help, so I gave her Ativan (Lorazepam) and I think she felt a little better but she did go to bed with her bucket next to her.
We had a great Sunday spent outside running through leaves, throwing rocks in streams and enjoying Herrell's Ice Cream with Auntie Mina :)
Friday, November 6, 2009
WBC - 4.7
HGB - 12.8
HCT - 36.2
Platelets - 205
Neutrophil - 1500
The girls were being super cute playing in Magi's room yesterday. I love normal days.
Wednesday, November 4, 2009
Tuesday, November 3, 2009
We were prepared for a long day at the clinic today, packed lunch snacks, brought coloring books (as if they don't have enough there) but it ended up being a quick visit. Mimi's counts went up so she did NOT have to get a bone marrow aspiration procedure. We both did the happy dance at the clinic today. I was SO glad! She was also, I could tell she has been really worried about it all day yesterday and even today she was not her perky self. Her strange hip pain, "butt" pain as well as a morning neck pain don't seem to bother her anymore so for right now we will just watch and see. We will resume Chemo on Friday morning.
Mimi lost another front tooth last night! So now for Christmas she can ask for her two front teeth ;)
And a bonus, here is a picture of our brand new TWO year old aka MagiBoo, as she eats her birthday chocolate frosted halloween sprinkled doughnut that is bigger than her head.
Friday, October 30, 2009
Mimi is also complaining of hip pain on one side as well as some "butt" pain. As soon the Oncologist heard that he ordered a bone marrow aspiration to be done on Tuesday to see what is going on instead of waiting until next Friday. They would have done it today but Mimi ate breakfast and due to anasthesia she has to be on an empty stomach. I am really hoping that her counts will just get better by Tuesday and she won't have to have the procedure at all...
She is feeling really good playing and being a crazy monkey with her sisters and buddies that came to see her today, you would never know she is fighting this battle...
So again PLEASE keep Mimi in your prayers.
Monday, October 26, 2009
Mimi was a bit bummed he could not attend the party, but she gave me her scrapbook to have people write in it. I brought it home and she insisted I read all the messages to her before bed she LOVED all the messages and especially the drawings.
Below are some pics that I was able to take and even pictures of me, which is very rare...
|Make a Smilebox slideshow|
Saturday, October 24, 2009
But wait! Dinner, raffle, and live music is still on!
460 Memorial Drive
We hope to see you there!
Friday, October 23, 2009
Monday, October 19, 2009
It was such a great time, bowling was fun although the whole turn taking thing went out the window, arcade games were a hit although the girls finally realized that you can't just pretend to play on those you really need money, and best of all they decorated cookies can we all say SUGAR RUSH!!!
Friday, October 16, 2009
The girls had a sleepover last night and woke up this morning to SNOW!
Something that I would rather not see in OCTOBER. But it is a cute pic ;)
Tuesday, October 13, 2009
Also because Iza has asked why there is only a picture of Mimi on this page I fixed it right after she made that comment. This cancer has not only changed Mimi's life but all of us and I think Iza is having a real tough time with it and is unable to express her feelings. She has been throwing tantrums over nothing and everything, part of it might be the age but I think seeing her best buddy, her double, her wombmate go through a drastic change is huge to her. I sometimes think Iza feels Mimi's pain, Mimi is too tired to deal with it and Iza cries for her. I am amazed at the twin bond more than ever.
I have put my self in her shoes a couple of times and I cry everytime I think what she is going through... One day she is spashing around in a pool with her sisters and friends the next day her sister is in a hospital for 10 days and when Mimi came home she was tired, sad, upset and was not her usual feisty self. Since August things have gotten "better" they do have their regular "Mommy she is LOOKING at me!" and "That is my side of the couch!" those times are back and I am good with that!
Friday, October 9, 2009
Thursday, October 8, 2009
I don't have the exact numbers because I forgot the printout at the clinic but since her counts were good she will continue with the Mercaptopurine Pill daily for another week.
Mimi had a really good time there today for one Iza got to come with her, Daddy came to visit, both girls got a foot AND a back massage, they got to play with another little girl who was at clinic today and all the little girls got a Barbie from the child life specialist. They really go above and beyond to keep these kids happy, so much that they didn't really want to leave!
Wednesday, October 7, 2009
It's no lie that times has been difficult for us, Mimi's diagnosis has changed our lives but we know with this strong community of friends, family and neighbors around us we will be okay.
Thank you again from the way way bottom of our hearts.
Mimi waving to over fourty bikes that showed up to ride.
Magi Iza and Mimi on a bike, it was hard to get Magi off the bikes.
Saturday, October 3, 2009
I am hoping the weather holds up so far it has been raining all day...
Friday started a little rocky at the clinic, Mimi was super nauseous but handled it really well. It was awful to see her vomit while her "sleepy medicine" my stomach was turning the whole time she was in the procedure room for her Spinal Tap. Everything went well and we were home in record time. Her counts were really good and when she heard that she said "Can I have an apple, a banana and then cucumbers with ranch?" It was a yes.
Today (Saturday) she was having a pretty good day so we had a "Daddy Mommy Iza and Mimi Date" (Magi got to hang out with Babcia and Dziadziu) We went out for pizza and saw the Pasghetti Movie (I love it that they still say that wrong) in 3-D, it was worth seeing!
Saturday, September 26, 2009
Everytime an alcohol wipe was near her (they use it to clean off her "tubie" to insert her fluids or meds), everytime anyone came in with freshly washed hands in antibacterial soap, and to kicker was the "sleepy medicine" going into her port. She always said she can taste it in her mouth right before she falls asleep but this time it made her vomit. (sorry for TMI!)
Her Spinal Tap went fine and it was pretty quick so we were home by noon. Some people asked why Mimi keeps getting Spinal Taps.
Here is why:
Intrathecal (Spinal Tap) chemotherapy, methotrexate, is also given into the spinal fluid for at least 4 doses, each separated by a week. This chemotherapy helps kill any lymphoma cells in the brain or spinal cord.
I found this site to be neat (Mimi likes to see why she gets things done) http://spinaltap.starlightprograms.org/003.swf
Thursday, September 24, 2009
Tomorrow is another Spinal Tap day, that she is not happy about, but hopefully Friday night movie night can cheer her up.
Wednesday, September 23, 2009
She feels great and her blood work looks awesome but since she had a fever last night while she was here they will probably keep her here until tomorrow morning. She is watching movies and coloring up a storm, I am here with her coloring as well. Oh and she is determined to write Emilia in cursive right now she is able to do Mimi.
The biggest news of all her neutrophil count is "normal" is that she is able to have fruit - Real fruit! She has chosen an apple. I'll let you know how it was...
Saturday, September 19, 2009
She will be going for Spinal Taps every Friday for the next 3 weeks and started a new pill daily. I will update with the exact study she is on when I get back to the computer. MagiBoo just got into soap...
Title of the project/research study AALL0331
Standard Risk B-prosecutor ALL
Part II - Post Induction Intensification
She was chosen randomized into the standard treatment arm (SS-IV) which will last 4 weeks.
Mercaptopurine (daily pill for 28 days)
Vincristine (IV push one time on day 1)
Methotrexate (intrathecal administration, spinal tap days 1, 8 and 15)
She is also getting her antibiotic three times a week two times a day.
Thursday, September 17, 2009
Tomorrow we will get the road map for the next few months. Mimi will also be getting another spinal tap tomorrow. She is not too happy since Iza can't come with her and also because she is getting the "sleepy medicine" that tastes like the poison apple... (I am not sure when she had one of those or if she had a talk with Snow White) Even though she gets the meds through her port kids get a taste in their mouth right before they go under and she remembers it everytime. She will be waking up to a chocolate chip cookie from Jess :)
Sunday, September 13, 2009
We were sent to the hospital for a CBC.
This whole time I tried to just breathe. This was around 10 am. Right after noon I got a call from the pediatrician "Iza's blood is fine" I cried.
Since Mimi is off the steroids for a bit and her counts are pretty good we decided to spend the day in a park with some friends, saw some monkeys, bears, oh MY!, eat ice cream, jump in a bounce house, have a boat ride, eat some more ice cream and my little monkeys fell asleep while chattering with their Barbie night lights. Today felt normal...
Saturday, September 12, 2009
Yesterday was clinic day. Mimi did not have a good morning over there, she cried while she got accessed she said it hurt alot, she was starving, it was raining... The only people that got a smile out of her were her Dr. (who she LOVES!) and the lady who rubs her feet (massage therapist who comes into the clinic). She had a Spinal Tab and another Bone Marrow. We should have results early next week. The procedure went well and after waking up from her "sleepy medicine" she ate her Sun Chips and Butterscotch Oatmeal Cookies all the way from Nana and Pops from Florida! She thought it was very cool to get cookies in the mail.
Blood Counts from Friday:
WBC - 14.6
Hgb - 11.7
Hct - 33.1
Platlets - 220
Tuesday, September 8, 2009
Now Mimi wants to write back.
We have gone through three sets of watercolor paints. Painting, drawing and coloring has become Mimi's therapy. She sets her self up on our new island right in the center of it all and creates. She has decided to respond to ALL the mail she has gotten so we are going down the list. Daddy has bought us stamps, although I think we might be sending him again soon. So we are creating art and stuffing envelopes.
Saturday, September 5, 2009
Today's word of the day was skunk and monkey. I am hoping this continues...
Another mood change she has shown recently is ignoring people and pretending she is shy, this is a VERY odd thing for any of our girls since shy is something they never did. The shy thing only lasts for a bit and them she starts with the giggles. The same giggle she had when she was tiny.
Friday, September 4, 2009
Today was a first day that Mimi did not have to be fasting before clinic, so she was quite happy to get there with an egg & cheese croissant and hash browns from Dunkin Dounuts (Yes if you are wondering she at it all.) Since it was kind of a rushed morning we forgot to put the magic cream on, we both realized it when we walked into clinic. No worries though the awesome nurses were able to put some on before Mimi's port (central line) got accessed, she amazes me as she just watches and does not even flinch as a huge needle goes into her port. Today she just got Vincristine (chemo) through her port which took all of 5 minutes she colored a picture we got the CBC (complete blood count) back and we were on our way home!
Her blood counts were pretty good today (well... for her anyway)
Abs. Neut 1.5 (1500)
This site has the abbreviations explained http://www.labtestsonline.org/understanding/analytes/cbc/test.html
Thursday, September 3, 2009
MOTORCYCLES FOR MIMI
SUNDAY OCTOBER 4TH RAIN DATE 10/11
THE RUMBLESEAT 482 Springfield St – Chicopee MA 01013 (413) 592-9025
REGISTRATION @ THE RUMBLESEAT 9am
RIDE LEAVES AT 11am - party to start @3pm
$20 FOR RIDERS $10 PASSENGERS/Non-riders
INCLUDES FOOD AND MUSIC
Wednesday, September 2, 2009
(I am thinking OMG!) "Daddy ATE the leftover ravioli last night!"
"It's Okay Mommy I will have some chicken noodle soup"
(OMG #2 That was finished last night too) "We don't have any left"
"Hmmm Can you make me more ravioli with sauce?"
"Anything you want" LOL
So yes I was making Ravioli at 8:15AM And my baby was happy :) Right after her breakfast she took her meds which she has become a Pro at, no issues at all, just a week ago we were both crying and sobbing as I begged and bribed so she takes her medicine.
And now she is asking for a snack it is 9:25 still AM
Thursday, August 27, 2009
"We got her blood results... the hospital has a room ready please bring her as soon as you can... I am so sorry..."
My heart has never raced so fast or pounded that hard. I took the three hot coffees and random three munchkins from the DD teenage worker and rushed to the hospital after making sure it it was okay that I leave Magi. Mimi needed Iza with her.
Two hours after entering the front doors of the hospital we were being told that our four year old daughter might have Leukemia. The only way to find out for sure would require a bone marrow biopsy.
On August 12th we were called into a room with all the doctors and nurses who we have seen for the last two days.
Diagnosis was confirmed Mimi has Leukemia (ALL)
Leaving after 10 days in the hospital.