Brianna’s Blog

Ξ May 14th, 2008 | → 2 Comments | ∇ Brianna |

• Well, if you read the comments on our last post, I believe Brianna had her third and final VRE result!!!  It must have come up after we left - Liz is one of our favorite nurses - actually she was Brianna’s nurse on the day Brianna was diagnosed with VRE (and she’s not afraid to be our nurse again - whew!).  That day was my worst day since Brianna’s diagnosis.  I was so worried because I had no idea how they would treat this antibiotic-resistant infection.  I am glad they have an antibiotic to treat this infection and it seems it is not widely available - but it tastes awful!  It is nice to not have to worry that she’ll have to take it again.  (I know that she could get this infection again sometime, but right now I can rest assured that she won’t get it from her own body.)  This means NO MORE ISOLATION!!!!!  Yeah! 
• Brianna is feeling better, but I really hate steroid weeks.  Brianna emotions are so extreme - her highs are very high, but her lows are also very low.  While she is taking steroids, she cries when I leave her - I mean attach-herself-to-me-and-hang-on-tight screaming kind of crying.  It breaks my heart.  Those are also times when she wants to sit on my lap and cuddle - which I love - so it is even harder to peel her off screaming to leave.  It was so hard to go to work yesterday after she was clearly letting me know she didn’t want me to go.  I think it was harder because she had been in the hospital so had 1:1 Mom or Dad attention 24:7 for the past 4 days - and they delayed her chemo so her counts wouldn’t fall.  Usually she takes steroids Friday - Tuesday - and we are home on the weekends while she takes them.  But this week she didn’t start until Monday evening.  She usually cries when I leave for work on steroid Mondays, but the rest of the time time she just gives me a hug and kiss and waves good-bye.  Well, this week it was a much bigger protest than usual.  And the protests seem to last longer than usual after I’m gone.  Breaks my heart.  
• Since the girls are so enjoying riding horses and Doug and I know nothing about them, we are taking lessons too.  Our first lesson was last night.  We didn’t actually get to ride, but we learned a lot about safety, getting the horses out of their stalls, leading the horses, brushing them, putting on the saddles, etc.    I was nervous - and I worked with Oscar, a huge part-draft breed horse, but it went well (he loves to be brushed) - and it was fun.  Doug enjoyed it too.  The only bad part of the evening, is that Brianna was SOOOOO upset when we left her with Keri.  She cried so hard, I was sure Keri would call us before we even got to the stable to tell us Brianna could not be consoled.  When I checked in, though, she was calming down - she wouldn’t look at Keri, but she wasn’t crying the whole time.  When we got home, she was happy because she got to play outside.  I’m thankful that it wasn’t raining!
• Brianna has slept through the night since we got home from the hospital, but she wakes up ready for the day by 5:52 am - seems to be a common time for her to wake up.  I’d prefer she sleep a little longer, but I much prefer the 5:52 am days over the change-the-sheets-at-3:00 am nights!  I think we just need to get better about going to bed earlier ourselves.
• Not sure what the obsessive food of the month is yet - maybe Tostitos?  She’s lost her zest for cottage cheese.
• Cute story from a couple of weeks ago - I heard Brianna in the middle of the night and got up to check on her.  The door to her room was open, but she wasn’t in her room.  I couldn’t find her so I opened Emma’s door.  Brianna was cuddled up to Emma, under the covers.  It was adorable!  I would have left her there - or taken a picture - except that since I heard Brianna, I knew she wasn’t going to quietly go to sleep and leave Emma alone.  She didn’t want to leave with me.  Thankfully, Emma sleeps through anything so she wasn’t even aware this had happened.  Brianna loves her sister!
• Emma is feeling MUCH better!  She gets her Sibling award from the ARC tomorrow night! 
• Mikayla VanWey, a friend of Brianna’s with leukemia, and her family are starting a chapter of Flashes of Hope in Iowa.  This is a non-profit organization that takes uplifting pictures of kids fighting cancer.  To get this chapter started, they need your help.  (Christie, I have borrowed from your website the instructions for donating.)   There are 3 ways you can donate.1. Go to the website and donate directly, be sure to choose Iowa - Heart Connection Camp from the pull down menu (https://donate.flashesofhope.org/product_info.php?products_id=31&osCsid=df207e71b1ce3a7ff93db0d9b8990f6d)

  2. Go to Jimmy Jaks in Marion and eat pizza now through May 18th. (www.jimmyjaks.com) A portion of the proceeds will benefit Flashes of Hope.

  3. Gold Canyon Candle Fundraiser - Open house at Christie’s house Thursday night from 6-8pm. For more information email me at cvanwey@gmail.com

• Thank you in advance for your support!
• I also want to ask you to keep the many children, besides Brianna, who are fighting cancer in your prayers.   I have started to follow several other carepages and the reality hits.  Cancer sucks!  So many people have to live this reality every day - it is heartbreaking. Sara

Ξ May 12th, 2008 | → 2 Comments | ∇ Brianna |

• We’re home!
• Brianna had to stay for 72 hours, be afebrile for 24-48 hours and keep her counts up to be able to go home.   She did have a fever again Saturday night, which I was concerned would keep us another day, but she didn’t have a fever again so they let us go home today.  They stopped all her chemo for the weekend so her counts wouldn’t drop and keep her there for the full 7 days, which was very nice.  I have to say I’m never disappointed when they tell us to stop her chemo.  I know she needs it, but I also appreciate that she gets a break here or there.  They have no idea why she spiked a fever.  Because they must attack with antibiotics so early, sometimes they never really know.  It could have been a UTI, sore throat or just a virus.  It is a little unsettling to me to not know, but whatever it was, it is gone now.
• The nurses were happy to see her and they realized she hasn’t been in the hospital for a while - I think the last time she was in was February during the ice storm.  Brianna was a little more stingy with her hugs this time. 
• We left probably hours before they had the third and final negative VRE culture back from the lab.  I’ll have to call for those results tomorrow because that is news to be excited about!  We spent this visit on isolation again, but hopefully the next time she has to stay we don’t have to worry about isolation.  She’s been on isolation since she had the VRE port infection in September - whew, it will be nice to be done with that!  The nice thing about VRE is that we don’t ever wait in the waiting room at clinic - we go back immediately and I was told on one visit that we bumped 7 other patients in the waiting room (it was a VERY busy day).  I felt bad about that, but I would rather wait than worry about VRE - so I’ll be sitting with everyone else at the next visit!
• Brianna was very excited to come home, but she was also very tired.  She fell asleep immediately in the car and then slept in my arms at home for another hour and a half.  I have to say I enjoyed the cuddle time.  It is exhausting for me too to chase her around the room when she’s feeling well enough to not want to stay in the room.
• Emma is feeling better too.  She seems tired from her sleepless nights and her change in routine the past few days.  Now we can hopefully get back to a normal routine.
• Happy Mother’s Day!

Ξ May 9th, 2008 | → 3 Comments | ∇ Brianna |

• What a difference an hour makes! 
• Just a short note tonight and more tomorrow.  I can hardly keep my eyes open.  We haven’t slept through the night for about the last month - or for much of Brianna’s treatment, for that matter.  Anyway, last night it was Emma that kept us awake.  She was miserable with a painful ear infection.  I sent Doug to the store at 2:00 am for ibuprofen (Tylenol wasn’t helping).  Then Brianna woke up at 4:42 am and somewhere in between Doug went turkey hunting.  It was a short night, to say the least. 
• This morning we went to Iowa City for monthly chemo.  It was a relatively uneventful visit.  Brianna felt warm to me, but her temperature was fine.  Passed the physical and labs and got her chemo.  Then we went to see Dr. O’Brien for Emma’s ear - we miss seeing them!  Brianna wanted me to hold her at the office and put her head on my shoulder - unusual for her, but I just figured the chemo had kicked in and she was feeling a little yucky.
• We got home around 4:00 and Brianna wouldn’t even walk up the 3 steps into our house.  Again, I just figured she felt yucky from the chemo.  She was crying and couldn’t be consoled.  I took her temperature (probably a hundred times) and it ranged between 99.7° F and 101.2°F between 4:00 and 4:30.  Doug called the doctor and we headed to Iowa City.  She was feeling fine at clinic a few hours ago!
• By the time we checked in to the hospital, her temperature was 102.8°F.  I don’t remember her ever having a fever over 102°.  She cried for probably the first hour we were there - she was MISERABLE.  Her heart was racing and she was breathing fast and heavy.  Tylenol helped and she fell asleep with me on the chair for an hour or so. 
• By 9:00 pm, her temperature was back to normal and she was feeling much better and acting like herself again.  I felt better leaving for the night to get some sleep because she seemed to be doing so much better.
• I later called Doug to see if she had fallen asleep yet and she was screaming in the background.  Her legs were cramping (from the Vincristine) and she was again, miserable.  They were giving her something for pain last time I spoke with him. 
• She’ll be there at least until Monday.  Her throat looked red, but not “that bad.”  I have no idea what is causing this fever.  What a day!

Ξ April 29th, 2008 | → 1 Comments | ∇ Brianna |

• Just a quick update - Brianna didn’t have any issues with the Bactrim.  So, at least for right now, she is not allergic to it.  No trips to the emergency room, no using the epi-pen.  It was probably just a coincidence that we gave her Bactrim on the day she developed the itchy rash, most likely caused by her liver issues.  Jaundice causes your skin to itch, and her bilirubin was up to 7.8, so she was itchy for quite a while until it came down.  Whew!  We made it over another speed bump. 
• We had Brianna’s IEP meeting last week.  Brianna gets to go to summer preschool for 4 weeks and then she’ll have preschool at home for the rest of the summer.  She will start back to Little Lions preschool this fall.  I’m so excited for her to get back into the routine of school and to get to play with other kids.  She will love it!  I have to say that we are THRILLED with her IEP team.  I believe they truly care about Brianna and are excited to help her.  THANK YOU GUYS!!!

Ξ April 27th, 2008 | → 2 Comments | ∇ Brianna |

• First of all, I’m sorry for my lack of updates.  I’ve been too overwhelmed with the world this month.  I didn’t feel I could write an entry that wasn’t complaining, whining, feeling sorry for myself, etc. and it is harder to be positive when I feel so down. 
• I left off with liver issues when I mysteriously disappeared….well, she has continued to take Ursodiol (a bile acid that helps keep her gall sludge from blocking the common bile duct).  She was off all chemo for two weeks.  At clinic on Apirl 11, her total bilirubin was back to 1.0 (normal is 1.0 or less) so they went ahead with giving her the Vincristine.  Because she had so many issues at once, they weren’t sure which medication was causing the issues.  So, we are introducing her medications back one at a time with lab work every week.  The first week after chemo, we gave her 6-Mercaptopurine.  This is oral chemo she takes every night.  She did well the week she took this (along with steroids) and didn’t develop a rash or jaundice.  The following Friday we gave her Methotrexate.  This medication she takes every Friday night, just once a week.  She has had this two weeks in a row now and no additional issues have developed.  She did have some concerning issues with constipation this time with Vincristine, but usually she’ll also take Methotrexate, which causes diarrhea, the same day she gets Vincristine so hopefully this will balance out next time.  On Monday, she will start taking Bactrim twice daily again on Mondays, Tuesdays and Wednesdays.  This is the antibiotic to prevent pneumocycstis pneumonia and is the most suspect for causing the allergic rash.  They told me before to give this to her and go to the hospital if she had a reaction.  This still makes me nervous, so I may give this to her in the parking lot at the hospital on Monday morning.  I’m suspecting she may have to continue to take Ursadiol for the rest of her treatment - chemo is hard on her liver and having complications from gall sludge could happen again…we’ll see.
• Brianna does have a bit of a cold right now.  She doesn’t have a fever, but she has quite a stuffy nose and a cough, mostly in the mornings and evenings.  Norma listens to her lungs daily and lets me know when they don’t sound as good as usual, but so far, they haven’t been bad enough to call the doctors.  We’re praying we’ll get through this one without a hospitalization.  The other thing that makes me nervous is that she isn’t taking an antibiotic - so I’m praying it doesn’t develop into something more.
• She has also seen her ENT this past month.  The tube is still in her right ear but has fallen out of the left.  He’ll check again in 6 months because she’ll need to be sedated to remove the right tube - so we’re hoping it falls out in the next 6 months on its own.
• We went to Des Moines a couple weeks ago to have Brianna’s picture taken for the Leukemia & Lymphoma Society’s 2009 Little Angels calendar.  The “angels” are kids whose parents bring them in for studio pictures with a Des Moines photographer, the sitting fee goes to the LLS and then people vote for their favorites on the internet for $1 per vote, also going to the LLS.  Brianna is not one of these angels.  Then on each page they also have a picture of a child with cancer and a short story about them.  Brianna will be one of these kids.  We haven’t written her story yet…so much to do.  Anyway, the calendars will be for sale and that money will also benefit LLS.  Kind of a neat fundraiser.  They gave us a copy of the 2008 calendar and it is really cute.  
• We found out Friday that Emma will receive the Sibling of the Year award through the ARC of East Central Iowa.  We did nominate her, and it sounds like quite a few others did too.  We will get to attend her awards ceremony in May.  What an honor!!  This has been a rough 8 months and Emma has been an amazing big sister!
•  
• Both girls have started horseback riding lessons for the season again.  Brianna participates in Miracles in Motion.  What an awesome program!!!  We’ve missed them all so much!  When we turned into the driveway that first time back, Brianna’s whole body was happy - yelling, clapping, bouncing, signing “horse.”  She remembered and was glad to be back too.  It is so amazing to me to see these kids on horses - they all have smiles the entire time.  Brianna gives lots of thumbs up as she rides by us.  Emma really enjoys it too.
•   
• She’s getting HAIR!!  It is still pretty short, but it is definitely visible.  At first I thought her head looked blue and I was concerned about her - but her lips weren’t blue so I knew she was breathing ok.  Then I realized the “blue” tint was just the little bit of light brown fuzz growing on her head.  Since she lost her hair, many people think she is a little baby or a little boy - Emma thought we should put a “tatoo” on her head that said, “I am a 5 year old GIRL.”  That is getting worse now that she has just a little bit of hair.  I am making a huge effort to make sure she always wears pink - it still doesn’t help some people, but I feel I’ve tried to make it easier for them. 

  

• Doug’s parents moved to Marion this month.  The girls are excited to be able to see them more often and we’re excited about the prospect of babysitters?!?!?!….
• Kind of humorous that the week Emma gets her nomination, Brianna and Emma have been fighting more than ever before!  Brianna seems to be feeling better and is quite mischievous.  She knows she’s being naughty and she thinks it is funny.  Poor Emma is on the receiving end.   Brianna will walk up to her and pull her hair for no reason, leaving Emma screaming and mad.  Brianna is so stubborn, persistent, and independent (everyone tells me these are GOOD things - (someday I will see this!) - but right now they are frustrating to all of us.)  She understands that she gets time out and she always apologizes, but then she’s right back at it.  Quite challenging to the patience….
• Brianna also drops to the floor in full-blown tantrums any time we say no to her.  Lately, she’s been obsessed with cottage cheese (the steroid obsession of the month).  She finished steroids a week ago and it seems the week after steroids is worse than the week on steroids.  We are limiting her to one 24 oz container of cottage cheese a day (I told you - OBSESSED!).  After she’s had her morning, afternoon or evening servings (always served in two servings - that way when she asks for more, we say “yes” one time.), we don’t let her have more and she can sit by the refrigerator and cry for a good 30-45 minutes.  Distraction hasn’t been working and trying to carry her somewhere when she doesn’t want to go - flailing and hitting and kicking - is sometimes too difficult.  She does eventually give up and move on, but we sure wish she’d give up sooner.
• Counts that are old, but I’d like them to be documented…actually starting to approach normal…
• April 3, 2008 -
  WBC 6060
  ANC 4787 (79%)
  Hbg 10.7
  Platelets 61,000 - transfuse around 30,000
  Total bilirubin 3.5  (Was 6.1 the first Saturday we saw the issue and 7.8 the following Monday at clinic so much improved!)
  Direct bilirubin 2.4 (This type of bilirubin is not helped with the bili light - instead gives her an orange tan.)
  SGOT 76
  SGPT 81
  GDTP 79
• April 11, 2008
  WBC 6500
  ANC 4934
  HGB 11.3
  Plt 241K
  Total Bili 1.0
  Direct Bili 0.6
  AST 54
  ALT 54
• April 18, 2008
  WBC 11.99 (bordering on high)
  ANC 9.97
  Hbg 11.6
  Plt 255
  Total Bili 0.7
  Direct Bili 0.4
  SGOT 50
  SGPT 97
  The liver function tests are always high, which they expect with chemo.  I don’t know when they draw the line at too high.
• April 25, 2008
  WBC 6790
  ANC 5640
  Hbg 11.3
  Plt 337
  Don’t have the LFT (liver function tests) results back yet.

Ξ March 31st, 2008 | → 3 Comments | ∇ Brianna |

• This week isn’t looking to be the boring week either.  I took Brianna to clinic today to follow-up on the jaundice issues from the weekend.  Her eyes still look yellow and her skin has a yellowish hue as well.  She is also VERY tired.  She asked to go to bed yesterday for a nap and just sat on a lap the rest of the day - very lethargic, clingy and just not herself. 
• They could see immediately that she was yellow too - makes me feel better when other people see what I see.  Another long day at clinic - she was examined by a resident, examined by the doctor and had labs drawn.  Of course, her port didn’t get blood return so we did the TPA thing again and then we waited for her lab results.  (I think we were there for almost six hours!)  Her liver enzymes are elevated, but not alarmingly so (they are usually high because of the chemo).  The only high value that is concerning to the doctor was her bilirubin - total bili 7.8 and direct bili 6.1.  One person commented that she’d heard Brianna was jaundice and impressively so!  Normal values are below 1.0 for total and below 0.2 for direct.  I said that when Brianna did something, she wanted to do it well - Mary said that they have always known Brianna was an overachiever.  Anyway, Dr. Goldman believes this is drug-induced so we need to stop the chemo (stopped as of Saturday) and let it resolve.  Unfortunately, these are important chemo drugs so starting again could be an issue - to deal with later.  Oh, and being jaundice causes the skin to be itchy as well so she has multiple reasons to itch. 
• The other issue that I mentioned to the doctor is that Brianna had direct hyperbilirubinemia at birth.  Indirect bilirubin is what can be corrected with the blue bili lights - which didn’t work for Brianna because her Direct bilirubin was high.  She had (and still has) sludge in her gallbladder that hasn’t caused her an issue since she was a newborn, but may be causing some issues now.  Dr. Goldman started her on ursodiol, which is a bile acid, to help keep things moving through her gall bladder and to help resolve the jaundice.  She also took this for quite a while after she was born.  Hopefully this works for her. 
• We are to get labwork done again Thursday morning and return to clinic Friday if her bilirubin hasn’t started going down.  The next step will be to do an ultrasound of her liver and gallbladder to see if they see stones or other problems. 
• Dr. Goldman said he’d call our Cedar Rapids pharmacy to see if they could compound the ursodiol and then we could leave.  If they couldn’t, I’d have been stuck in Iowa City for another few hours waiting on the pharmacy - I’m thankful that Fifth Avenue Pharmacy is able to compound some of her medications so we can get them locally.  I was packed up and ready to leave once I saw Dr. Goldman hang up the phone - and I did just that.  My cell phone rang in the parking garage and it was the University of Iowa.  I called back before we left to ask if I’d forgotten something and Carolyn asked me if anyone had taken the needle out of Brianna’s port.  I started laughing so hard I was crying.  I was so anxious to leave that I completely forgot that she still had a needle in her chest.  They said I could take it out at home, but since I was so close we just went back inside. 
• For a six hour clinic visit, it really was one of our more pleasant visits.  Brianna was quite subdued so was happy to sit and color, play card games, do sticker books and watch movies with me.  Her attention span was longer than normal and she didn’t have any tantrums (until I wanted to carry her in the parking lot).  She was happy, just subdued.  We set up movie theater seating and watched Curious George and when she was tired, she put her head down on the pillow, put a blanket over herself, and told me to shut off the light - no, she didn’t sleep, just rested for two minutes or so.  We had a good day!
• CBC results from today:
  Hbg 9.3 (down from 11.2 Friday, but still fine)
  Platelets 105 (down from 112, but again, fine)
  WBC 6800 (WOW!)
  ANC 5862 (WOW!!!)  86%

Ξ March 29th, 2008 | → 5 Comments | ∇ Brianna |

• Well, we are still praying for a boring week at the Kelley’s.  Just when we think we have everything done and we’re ready to settle into a quiet, “normal” week at home, we hit yet another speed bump.  The good thing is - it is only a speed bump.
• Brianna was up Monday night from midnight until 5:30 am - itching.  She also had a hard time going to sleep and didn’t fall asleep until 10:00 pm (her bedtime is usually 8:00 pm).  I couldn’t do anything to get her comfortable.  She kept asking me to rub her legs, then change her diaper, then get a drink, then covers on, then covers off, then sit in the chair, then rub her legs, then…you get the idea.  At 1:30 am, I became kind of alarmed that she was rubbing the heels of her feet on the bed and rubbing the palms of her hands together like she was trying to scratch an itch.  I turned on the light and sure enough, she had a rash on her legs, ears and neck and her hands and feet were red.  We called the doctor and she recommended Benadryl.  We had given her Benadryl when she went to bed, but it didn’t seem to calm her down as it usually does.  It didn’t work the second time either.  Doug and I traded places from 3-5 and she finally settled down to sleep from 5:30 - 6:30 am.   It was a long night.
• I called the University and took Brianna to clinic on Tuesday so they could see the rash.  Dr. Tannous said it was a classic allergic reaction rash - I told him it wasn’t written in the right color ink because I couldn’t read it.  Luckily, we have had few issues with allergies so don’t have experience here.  Anyway, he believes it is caused by Bactrim, an antibiotic she takes Monday, Tuesday and Wednesday of each week to prevent pneumocystis pneumonia.  He said to hold the rest of her doses this week and give it to her again Monday morning without any other meds.  If she has a reaction, we are to take her to the emergency room because allergic reactions can be so unpredictable.  She didn’t have trouble breathing this time, but he said that doesn’t mean it won’t happen next time.  So, he gave me an epi-pen and we went home - uncomfortable with this plan, but at least it is a plan.  The medicine they would put her on to replace Bactrim has side effects of anemia (nothing new - we can handle this one) and methemoglobinemia (blue baby syndrome frequently caused from high nitrates in drinking water - hemoglobin doesn’t effectively bind oxygen so they get a bluish tint).  So, if she needs to take this antibiotic, we need to do blood tests to monitor her methemoglobin.  I’m not excited about this either.  Overall, I’m not excited about any of the news we got with this.
• She slept better the rest of the week - not great, but better.  We give her Benadryl at bedtime and she makes it until 2:00 or 3:00 and usually falls asleep again for us.  The rash seemed to get better, but it didn’t go away - a little bothersome to me since her last dose of Bactrim was Tuesday morning.
• Friday evening, Doug and I were concerned again about her rash.  It looked worse on Friday night.  She was holding her shirt up scratching her belly and pulling her pant-leg up to scratch her legs.  She also seemed more uncomfortable.  We did some internet reading and I started to believe the rash is caused by Mercaptopurine instead of Bactrim.  Brianna has also had a couple of days with too many wet diapers that concerned Norma, but then in the evening, the frequency stopped.  Her urine is looking darker too.  These are also listed as side effects from Mercaptopurine.  I called the University to plead my case to hold the Mercaptopurine (another crazy mom moment) and was told to give her Benadryl and call if it got worse. 
• Well, Saturday morning, I called because it got worse.  She was itching uncontrollably and the rash was showing up on more parts of her body and she was digging in her diaper itching underneath it - she was miserable and the Benadryl wasn’t helping.  The fellow said she’s speak with the staff and she called back to tell me to hold the mercaptopurine and the Bactrim and follow-up on Tuesday.  This made me feel better.  But as the day went on, I noticed that the white’s of Brianna’s eye were looking yellow.  Poor Emma, I kept asking her to sit by Brianna so I could compare their eyes to see if I was really seeing yellow or not.  I waited for Doug to come home to verify what I was seeing and he agreed (using Emma as the comparison again) so I called Dr. Ellen yet again - she was so sweet dealing with this crazy mom - and she said she’d like us to get some labs done.  She called orders to St. Luke’s hospital because most labs are closed Saturday afternoons.  We went to get labs drawn - Brianna does so well and she charms so many people - they all thought she was adorable.  Dr. Ellen called back to tell me Brianna’s billirubin is high at 6.2 and it was only 0.2 two weeks ago at clinic.  We are to hold the mercaptopurine, methotrexate, Bactrim and Tylenol until this resolves - and I got the impression it could take a little while (still don’t know how long, but it seemed more than a couple days).  I have some strange feelings in these situations - relieved that I’m perhaps not that crazy, but disappointed that something is wrong.  I’d prefer to be that crazy mom and told not to worry because nothing is wrong - so it is disappointing when I’m on the right track.  Then again, I’m glad they follow-up on my crazy requests and catch some of these things early.  Perhaps I should call myself “observant” instead of crazy?
• March was a busy month at work, so I’m relieved to have made it through.  I was nervous all month long that Brianna wouldn’t let me get my work done - and she did add some challenges, but we met our deadlines.  Now I feel like I should be able to take a big breath and relax. 
• Brianna’s hair is coming back - she has a fine layer of very light fuzz.  Emma thinks it will come back her color - very light.  It is long enough that if we smooth it with our hands, you can actually see some hair lay down.  (OK - maybe we’re the only ones that notice).  We all actually love Brianna’s bald head.  We might be a little sad to see it go.
• Counts from Friday:
  Hemoglobin 11.2
  Platelets 112,000
  WBC 5650
  ANC 4011 -  71%
  These counts are FANTASTIC for Brianna!
• Have a great weekend! 

Ξ March 18th, 2008 | → 7 Comments | ∇ Brianna |

• HAPPY BIRTHDAY, BRIANNA!  She turned 5 today.  We ate spaghetti (her favorite) and ate cake (she wasn’t interested) and ice cream (birthday gift from Emma).  She likes to sign “ice cream” more than eat it right now, but she ate a few bites.  She opened presents - now that she enjoyed!  We had a fun birthday celebration with Grandma and Grandpa Ludvigson.

• Brianna’s rash is getting better, but she is still not feeling too well.  She is sleeping a lot - 3 naps a day AND she slept through the night last night.  I got up to check on her at 5:30 am to make sure she was ok.  She is ASKING to go to bed by 7:30 every evening.  She wants to be held a lot, she is constantly grinding her teeth and she is still moaning quite a bit.  We gave her Tylenol with codeine last night which we had leftover from her mucositis (the doctor said it was ok to give it to her if she seemed in pain) so we do think that helped her sleep well.  She signs “ouch” and points to her diaper and her jaw.  Hopefully she starts feeling more like herself soon.  I do feel fortunate that she isn’t in the hospital.
• We got some good news today - she tested NEGATIVE for VRE on Friday!!!!!  This is the first time she’s tested negative since her port-site infection.  She has to test negative three times in a row before she can be off isolation, but this is a step in the right direction.
• Brianna is doing so well with signing.  She is just funny.  Last night she was sitting on my lap at the table and she pointed to me and pointed to herself, then she signed “sit” and pointed to the living room - translation, “Brianna sit on Mommy’s lap on sofa in living room.”  After we’re sitting, she asks for a blanket and a movie.  That seems to be her favorite evening activity - definitely a sign she’s not feeling the best.  Anyway, it’s cute how she gets her point across. 

Ξ March 17th, 2008 | → 2 Comments | ∇ Brianna |

• Brianna’s rash isn’t getting worse and it didn’t go away.  It is possible that it could be shingles instead of chicken pox.  Her titer showed an equivocal result - not positive, not negative, but somewhere in between.  She hasn’t had chicken pox, she hasn’t had the vaccine so they believe she may have been exposed at some point.  I wonder if it is possible that her titer was equivocal because she’s had so many blood products from people that have potentially had the disease?  Anyway, it is clear she isn’t feeling her best.  We don’t know if it is because she had chemo on Friday, if it is because she is taking steroids, if it is because she has shingles/chicken pox, or if she has side effects from the medicine that make her feel yucky - all good reasons to be grumpy if you ask me.  She wants to be held a lot and she sits on our laps and moans or cries much of the time.  She keeps signing “ouch” while she is crying so we do believe she is having pain.  She is also grinding her teeth a lot again, a sign she’s had another dose of Vincristine.  Poor little sweetheart!  She doesn’t require hospitalization unless she develops a fever, respiratory symptoms or dehydration issues.  So far, the only one that concerns me is dehydration.  She is supposed to stay hydrated with the acylovir and she isn’t drinking well.  She is also very tired - she has asked to take a nap the last couple of days.  She has been sleeping through the night the last two weeks (didn’t want to mention it because I was concerned and because I didn’t want to jinx a good thing), but she broke that streak again last night.  I just wish we could do something to make her comfortable.  We give her Tylenol, but it doesn’t seem to do much.  She’s happiest sitting on our laps eating a bowl of spaghetti watching a movie.  We’re just praying for a quiet, comfortable week with a quick recovery for her. 
• Brianna’s birthday is Tuesday!  She will be 5.  We had a celebration with Grandma and Grandpa Kelley today and she wasn’t even interested in tasting the gluten-free red velvet cake we had.  (It was very good if anyone with gluten issues wants the recipe.)  Maybe by Tuesday she’ll be more interested in cake…
• Doug went to the Aiming for a Cure banquet last night.  I was planning to go, but Brianna developed a rash at 4:00 as we were getting ready to leave so I stayed home to get her medicine and take care of her.  Doug’s dad went in my place.  It sounds like a wonderful event!  Hopefully I’ll get to go next year.

Ξ March 15th, 2008 | → 3 Comments | ∇ Brianna |

• Brianna officially started Maintenance Therapy yesterday!  This is the last stage of treatment, but it continues until her end of treatment day, which as far as I know right now, is November 9, 2009 - for almost two more years.  Everyone says this is the “easy part” … we’ll see.  Everyone also sees that Brianna doesn’t do things the typical way - they said yesterday that “Brianna doesn’t do boring.”  So we’re off…..
• Brianna did well yesterday for her chemo.  A student nurse accessed her port and it went very well.  The spinal tap went well.  She is usually grumpy coming off the anaesthetic, but we are usually in the room until she’s feeling better. Today they got things done and we were free to go - to the pharmacy for her new meds.  Pharmacy is the one area of the hospital that does not run as smoothly as the rest of the hospital.  When I walked in, there was standing room only.  Anyway, Brianna had a few tantrums while we waited.  Everyone was very nice, but I was so ready to leave and people seem to move slower when you are anxious to go. 
• For maintenance, Brianna’s chemo schedule is as follows:
          IV Vincristine once a month
          Methotrexate spinal tap every twelve weeks
          Decadron steroids 5 days a month
          6-Mercaptopurine (oral chemo) every night
          Oral methotrexate every Friday night on days she doesn’t have a spinal tap
  Doesn’t sound that “easy” to me!  The steroid weeks will be tough.  Brianna gets angry and hungry on steroids and with the communication barrier, it is that much more difficult.  She handles the 6-mercaptopurine well, but it is difficult to give because it can’t be given with food or dairy products and must be given at night (studies have shown that the majority of kids did better getting this drug at night).  She’s never had oral methotrexate before.  It will be great to have fewer trips to Iowa City (monthly vs. the weekly we’ve been doing) and fewer spinal taps.  Brianna does very well with spinals, but I still dread those visits more than the rest.  I’m praying Brianna decides to be boring for a while so maybe we can have some “normal” weeks here and there.
• Evening update:  Brianna has a rash on her hip so we called the University and they are starting her on Acylovir under the assumption that it is chicken pox.  They decided to be conservative with her which is fine with us.  Hopefully it doesn’t progress any further.