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

Good News all around...

Does this look like a kid who has a 103+ fever to you?

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!

Counts:


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.

We were suppose to get a hurricane today, it was kind off eerie being at home waiting for something bad to happen. The girls are learning about all these different weather conditions and are obsessed with the weather channel. Thankfully all we got was some rain and wind. I hope everyone else is okay.

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!

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.

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.

I say SUN you say SHINE!

Sunshine!

CAMP

SUNSHINE!!!

On August 7th for the fourth time in the last 12 months we made a trip to Maine. Auntie Tracy The weather forecast did not look promising at all, our drive was gray and rainy. But like magic the clouds started disappearing the closer we were getting to our destination and when we parked to check in the sun was out! Magic of Maine!

The girls made friends instantly with other kids and counselors, we also saw some friend from our previous visits. As always the week was filled with activities and adventures. Iza and Mimi's highlight of the week was probably fishing on a boat with Master Bass Fisherman, they both caught fish! They loved it! Lots of swimming, crafts, playing on the lake, just being kids and having fun.

While the kids were enjoying their activities adults had a fun schedule too. It is always fun to play really silly games and just relax. Sessions are always filled with knowledge, inspiration and hope. As we get closer to our off treatment date I always wonder about long term effects. I met a wonderful girl many years off treatment who gave me so much hope, she has survived cancer and never let it stop her from achieving her goals in life. Naturally Iza and Mimi glued themselves to her and talk about her often, I am sure her phone is alerting her with texts from the girls. I try not to dwell on the effects of chemo but knowledge is power and it is always better to be prepared. I met parents who have kids in various stages of treatment as well as years off treatment, all of us in a club we don't want to join but so glad a place like Camp exists and we can come year after year until one day there won't be a need for this "club".

The girls out on the porch enjoying the fresh Maine air.

Tracy acting, while Mimi reads the poem Sick by Shel Silverstein. During the Talent Show. Magi slept through it and Iza was not feeling to well and missed it also.

Magi during the masquerade ball, I think she went through about ten different costumes.

This was Ballerina turned Unicorn.


Wish boats. A special night at Camp.

All the kids make a wooden wish boat and while a song plays

they release them out in the water and make a wish.

The door Picture.

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 :)

Raw Emotions

It is August. I am not sure when I will NOT think back to August 2009. I find myself going back and remembering everything in detail from mid July when Mimi was complaining of random arm pain, not wanting to walk while we were at the zoo, looking pale, all these things... Once thought What if I got it checked earlier? Why did I ignore it? But now I know that this disease just comes camouflaged under regular kid things that I would not normally call a pediatrician about. But every time Iza or Magi get a random sickness I go there... What if? That is what this journey did to me I no longer look at regular kid things regularly.

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.

Neuropsychology Testing

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

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

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


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

• Neuropsychological testing

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

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