OxOxOxO

Happppy Valentine's Day! We love Heart Day!

Two years ago we spent Valentine's day at the hospital Mimi had a fever and needed a platelet transfusion. Last year was the first year Iza and Mimi were in school and were SO excited to take Valentines and have a party at school, unfortunately Mimi got a fever in the middle of the night and to the hospital we went. She was so bummed. She did get a treats and Iza brought her Valentines from school, she also got to experience fake nails!

THIS year we made it a big one! Starting this morning Daddy made yummy breakfast for all the girls in the house, including Nana who was visiting from FL. We participated in Hilltown Families Valentine Exchange, making lots of cards and getting some great ones in mail.

This is the third year Mimi received a special Valentine from "Cali Ali Valentine", a mom of a cancer survivor pairs up her grade school students with a child in treatment. It is so thoughtful this year Mimi wrote a note back to her Valentine.

We made gift bags for everyone in class, lots of handmade cards. It was a heart making factory here last night! The girls also decided to make some cards for the Children's hospital and cupcakes for the nurses and staff.

2/14/10 Rockin' the Tattoos and Auntie Meg's boots! All done while the IV is running.




2/14/10 Getting Some platelets, the yellow bag on top of the IV.





2/14/2010 LOVE! Hearts sent to her from an elementary school in IL decorated her room.

2/11/2011 Opening her "Cali Ali Valentine" :)

2/14/11 NOT Happy about missing her Kindergarten Valentine's Day party but she got Nails!

Valentine's 2012!!! Guess who is who behind their Winged Hearts art project.

Miss MagiBoo and her Heart outfit - "It all matches! They all have hearts!"

Important phone calls.

First phone call. Preliminary Bone Marrow results from Tuesday showed NO leukemia!!! It feels like GIANT load of bricks has been lifted.

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!

Busy day ending with Discharge!!!

Mimi went to bed with no fever and almost no headache, around 4am I felt her hand on my cheek it was on fire, I wanted to cry. Sure enough 102.5. Although this time around Tylenol kicked in pretty quick and she went back to sleep until 10am. And that s when Dr. R came with a plan for the day. First chest x-ray, which showed some/possible pneumonia. Next Spinal Tap to check if these fevers and headaches are bring caused by viral meningitis, or not likely but leukemia cells in her spinal fluid. Since Mimi had not eaten anything this morning we were able to do it around lunchtime. She was not happy about and proceeded to ignore everyone that tried to talk to her. The spinal tap went well, she came back to her room where a giant purple monkey balloon was awaiting her, she found it quite funny, Thank you Momo!!! She also had a note from Auntie Meg and Chris. So we watched some Disney and waited for some news. And....

WE ARE GOING HOME!!!

Her spinal fluid showed no signs of meningitis. So the headaches were probably caused some other virus or the high fevers. She is going home with two different antibiotics for the pneumonia and something for the headaches in case they come back. We will find out about any other tests done on the spinal fluid during the week.

I can't wait to go home to all the Monkeys, Mountain Laundry, City of Dishes, Land of Toys and Adventures of Grocery Shopping. Home Sweet Home!

Her shirt says SEA YOU LATER!

Thank you for all the sweet messages, prayers and love <3

Be Monkey!

Rough Night but Lucky Charm kind of a morning!

Mimi did not have a good day or night yesterday. Around 3pm she started complaining of a headache, her temp was in the 99s she fell asleep shortly after. Her temp kept creeping up while she slept despite the Tylenol. My parents were here while she slept I took Iza and Magi out since they needed "normal". They have been doing really good but yesterday Magi had enough I think she showed everyone that with a loud three year old kind of a tantrum on the way out of the hospital, she got a little better with some mommy time. I came back to the hospital around 9pm and Mimi's headache got really bad she looked miserable, I watched the thermometer as the nurse was checking it 102... 103... 104.1! This was after Tylenol and at that point Motrin was given too. Usually Motrin is not given since it may cause platelets to drop, but it was okayed as a one time last night. I was rubbing her forehead since that helped her headache and was putting wet wash cloths on her. Finally at 3am, twelve hours later, her fever went down It was nice to her a number less than 99.

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!

Counts
8/18 - WBC 1.6
ANC 1300

8/19 - WBC - 2.6
ANC - 2300

Update

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.

One more night.

Darn fever came back again around 5pm, 102 point something... Still no known cause. All tests and ultrasound came back fine.

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...

Chips and Salsa Cart Needed...

So we were kind of bored this morning, and decided the hospital needs a chips and salsa cart, and guacamole, along with IPads for everyone and a RedBox :) oh and also kittens.

Miss Mimi had a fever during the night of 102.7. Another set of blood cultures was taken. The blood and urine culture taken when we came in Monday night came back negative so still no known cause for the fevers. She was NPO, (meaning nil per os Latin for nothing by mouth, a little trivia for you today) she had an ultrasound of her abdomen, the gallbladder area, since she had some pain in that area when we initially got admitted. So now we are just waiting around to hear the results from that and what the plan is for the day.

Counts:

8/15 - WBC 2.0

ANC 1300

8/17 - WBS 1.8

ANC 1000

Monkeys hanging out...

Hey where is Perry!

Intrerrupted by a Fever.

Last night out of nowhere Mimi got a fever, of 102.7. She did complain of a random stomach pain through out the day but no other issues. With the fever came shoulder pain and leg pain. We got admitted around 10pm last night. She was NOT happy about missing a movie with her sisters but knew she was going to the hospital. We got here her fever kept creeping up, half hour later the Tylenol kicked in pain went away and we both fell asleep and slept through all the vitals.

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.

Weekend of Changed Plans.

Friday (4/29) night Iza and Mimi were having a sleepover at the neighbors upstairs. Mimi enjoyed the sleepover until about 5am, I heard her footsteps coming down, she said she missed me and puked at my feet... which usually means fever. Sure enough 102.5, I made the necessary phone call, I packed her in the car and she was admitted around 6am.

It might say Miss Giggles on her pajamas but she was NOT Giggly at 6am.

Counts came back okay I thing ANC was around 750. By noon she was feeling much better just a junky cough but since she had a fever we were in there for at least 24 hours from last fever. Babcia came to visit while I took the other girls to a First Communion and made sure to take plenty of pictures for Mimi. I came back we swapped places and the girls went to have a sleepover at Babcia and Dziadziu's. Since we were inpatient we decided to do the Pentamidine inhalation treatment. The inhalation treatment will replace the daily antibiotic, we will do this once a month instead. I am hoping for no crazy side effects since this is antibiotic number 4. I was not there for the beginning of the treatment but got there right at the end and the minute Mimi saw me she just broke into tears. Poor thing, I think it was mostly that I wasn't there (my mom was) and this was all new to her. After some hugs she was back to herself and excited about having a hospital movie night with Auntie Tracy.

Magi was just going with the flow for most of the weekend but poor Iza was an emotional wreck. She missed me and Mimi, didn't really know what she wanted. Since I knew Mimi was fine at the hospital and some one was there to be with her, I had to take care of Iza. She is a sensitive little girl and is not always able to express her feelings. Sunday was special for her we spent it at a Pancake Breakfast Fundraiser for Cancer Free Kids. Iza and Magi had a great time eating loads of pancakes, on the wagon ride, and watching the trains.

Magi and Iza enjoying some pancakes and milk in the sun.

All in all we got to do the things we were suppose to just minus a kid, but thanks to the wonderful nurses and child life she did not even thing she was missing out on anything. She was discharged in time to come home and enjoy dinner and cake for Daddy's Birthday!

Fever.

Yes. It has been a while, almost a year. But it decided to creep up on us Sunday night. Mimi went from fine to all sorts of pain and fever in about an hour. Her biggest complaint was her leg she could not walk on it, I remember this happened last year during fevers also. It took me a minute to find my thermometer which read 100.7, while I was dialing the on-call Onc. it kept going up higher. She was miserable at home and the drive there but perked right up with Tylenol and Kyle "the man with the crafts and movies." She had a pretty good night we both slept through all the vitals, I made sure they actually came in because I did not remember and neither did Mimi.

In the morning she seemed fine and then fever came back again, 102.9, came down with Tylenol but as soon it was wearing off fever was back. She spent the day taking cat naps, seeing some friends, making crafts. Her blood counts were not terribly low so that was not a concern. At some point in the morning she had a flu swab, a tiny q-tip in the nose, she was not a fan. Results showed she in face did have the flu so we had the option to stay another night or go home with a box of Tamiflu. Mimi chose home sweet home!

Her chemo is on hold, so for now we will just do the Tamiflu and Tylenol as needed for fever. Spinal Tap has been rescheduled. Also no school, which is really hard for Iza because "that is NOT fair!"

Magi had a lovely date day with Daddy she keeps telling me she wants to go on dates all the time, I am not sure if Dan knows what he started... She went to the mall, got her hair trimmed, picked out valentine gifts for everyone and also had lunch.

Waiting for Discharge Papers.

Yes!

So the bacteria is believed to be a contaminate. The second blood cultures that were taken (on Wed.) have not grown any bacteria which is reassuring. She will have a blood culture done at some point next week just to triple check but that will be done at the clinic. No extra meds for home and continuing with nightly chemo pill. Oh and we are also watching for any chicken pox spots in the next couple of days since Mimi might have been exposed on Monday while she was in the playroom, although she was wearing a mask, has had the vax, and was only there for a couple of minutes.

Mimi looks great, her ears look alot better. So I am waiting to sign my name on dotted line and take my Mimers home to see her fellow monkey sisters!

Request for tonight: Ravioli and Movie Night.

We got a little plan.

So the plan is we are going to wait until tomorrow to see which gram-negative bacteria is growing, to make sure we have the correct antibiotic to treat it. Also to see if the blood culture from yesterday has grown anything, so far it has not, it might be because the original as contaminated or the antibiotics she is getting for the ear infection are helping. Infectious Diseases wants Mimi to stay overnight and more than likely discharged tomorrow.

The question came up, How serious is this infection? Reality is that if we know it is in fact in her blood, and once we know which one it is, the doctors will know which antibiotic will get rid of it and she will be fine. Another question if she does have this bacteria, how did she get it? She is a kid and could have gotten it anywhere, being immunosuppressed she has a higher chance of catching things.

She looks fine, she is eating, and had loads of energy, she has been having tricycle races all over the 4th floor, it is quite fun to keep up with her IV pole, come on down and try it.

Waiting for a plan.

Late this morning we found out from the doctors the bacteria on the blood culture is gram-negative, right now we are waiting for Infectious Disease (sounds scary) to go into the lab and I guess confirm that. If it is in fact that, I believe the plan is that Mimi will go home and a nurse will come to the house and teach us how to administer the antibiotics daily to Mimi through her port. But we are still waiting for a definite plan.

Mimi's counts have dropped since Monday, when we came in her Neutrophils were around 3500 right now they are around 700, which probably means her body is trying to fight this, all chemo is on hold so she can have something to fight this infection with.

Positive Blood Culture.

We were SO close on going home. But NO GO.

This morning Mimi's Blood Culture that was taken on Monday night turned out to be positive. It could be one of two things a bloodstream infection or false positive caused by skin contamination. We have to wait until tomorrow morning to see exactly what "grew" on that culture. Also another blood culture was taken this afternoon to see if it will have the same outcome but we are hoping it was just contamination. (If this is all confusing, check the link above, I just learned more than I probably needed to about blood cultures from the hospital and from Google)

Mimi was ready to go home and I think her sisters are ready to have her home but hopefully tomorrow. Iza and Magi came to visit for a while and got to play dress up and doctor on the hospital play deck with child life. She is running around the halls with her IV pole and chatting it up with the hospital staff, she looks so much better than yesterday.

So Far...

Mimi is looking good.

She was feeling good last night she got to hang out with Babcia all afternoon and last night, while I went home and hung out with Miss Magi Boo who was in need of mommy time. Iza got to have a sleepover with Hannah. Mimi played, colored, got magic bubbles, when I got back at around 9pm she was all smiles. She also ate! Some crackers, cookies, but does not want to drink. It was less of a stressful night.

So far this morning she woke up late, but has eaten two bowls of Toasty Os with the milk. So far it's good. We are waiting for counts and for the Onc. to come in. Hoping to go home!

Okay off to get coffee. For me.

ER Visit and Hospital Stay.

All was fine in our house with 4 bouncy girls, one extra for a very anticipated sleepover, until about 8pm when Mimi started to not feel well. She was complaining of a stomach ache, which followed with vomiting, headache... but no fever. Her Onc. had us bring her to the ER, where we got right in, we flew through triage into a closed room tucked away in the Pedi ER section. I was nervous since we have never gone through the ER with Mimi, I was not sure how the port access would go. The nurse was awesome though and no tears or issues from Mimi. After we got counts, which were good, and found out she had a double ear infection she was admitted to the floor for observation. She looked good this morning and we "thought" we might even go home until the vomiting started again, so we are staying the night.

She is quiet and tired right now, I know she does not feel well because there are crafts in front of her and she has not touched them.

I am mad, mad for her because she can't be at the marionette play today like we planned, I am mad for her sisters because they had to miss out on fun, and for their best buddy because her first sleepover was ruined... okay whining party over.

Still here.

Mimi is doing well, no fevers. Right now we are waiting for blood counts to come back and as long as they have not dropped and we are still fever free we can go home today.

She is making pictures loaded with glitter for Iza and Magi, I like glitter that I don't have to clean up ;)


3pm
We are not going home. Counts dropped.
Yesterday WBC 7.5
Today WBC 4.7

Inpatient...

So four hours after the last post Mimi was in our bed talking in her sleep and grinding her teeth. Never a good sign. Her temp was 102, she was miserable with back and leg pain. We were admitted around 4:30am. Once we got her she got antibiotics and some fluids and we tried to get some sleep. She is fine now, in a good mood no fever just high heart rate. Her counts are great so it is probably a viral infection.

Cancer has a way of being a JERK...

Day # 5...

We have been moved into a new room last night while Meg was here to hang out with Miss Mimi. We redecorated with the hearts and had some new ones to add! She is in a room with a view, good thing since she will be here another night. ANC is still low (300) and Dr. L would like to see it a little higher before she goes home. Tomorrow sounds more promising.

Mimi really likes to know about how things work and why, she wanted t know all about platelets so we did a bunch of research and she got to see some pictures. One of the best books I have found that you can read online is Chemo To The Rescue. It explains Chemo and Leukemia to kids in kid terms.



Iza was overjoyed to see Mimi yesterday. They got to be goofballs together while Mimi was getting her platelets. Iza was psyched to have the hospital snacks, saltine crackers, graham crackers, and a cherry popsicle.

Thank you Miss Shelley's Pre-K Class from West Chester, PA for the hearts in the mail and prayers!

Inatient Day 4

We just got word that there will be day #5 also. Mimi's counts dropped from yesterday, which could be partly to the fact she got a double dose of Thioguanine (pill). Since her platelets dropped to 18 from 26 yesterday she will be getting a transfusion this afternoon. Her liver enzymes were also elevated, which does happen with Thioguanine, but she will be monitored today.

She is doing okay being stuck here, keeping busy crafting, playing games and watching way too much TV. Iza on the other hand is really missing her sister she was so sad this morning, I went to the "stash" of toys to cheer her up a bit.

Hospital School.
Mimi has been doing really well sounding out and writing words she decided to practice below, soon she will be writing her own posts!
find book in book store x-ray dog book milk lisa pops nana lily ella hannah magi mommy love kat kate princess box fox cup izabella

Inpatient Day 3

We are still here... Mimi's counts are a bit better she looks great. She is getting silly which means she is ready for home. She spent most of the morning with Toto and Eryn while I went home to take care of Iza who was resting from a 12 hour stomach bug and MagiBoo who needed mama snuggles.

We will probably go home tomorrow as long as counts keep going up. Her platelets went from 22 yesterday to 26 today so no platelet transfusion needed today.

Okay I am off to find a flashlight for the fort on Mimi's bed.