• Well, since the last post, we had a great Christmas holiday.  My sister and her family came back and we had fun spending time with them.  We only had to travel to Coralville so didn’t have any issues with the roads.  We didn’t do Christmas cards again this year so I’ll have to do an update with pictures.  We are now trying to get settled back into a “normal” routine.
• We have been battling a rash on Brianna’s face and neck since probably mid-November, shortly after she completed treatment.  Initially, we weren’t too concerned about it because she had a rash on her face and hips off and on throughout treatment and we just thought the cause was steroid withdrawal.  Other families told us it happened to their kids too and we found other parent notes on the internet.  Then it got worse and was on her chest and arms and was bothering her because it was itchy.  Oncology doesn’t believe it is caused by drug withdrawal or as a reaction to a current drug.  Last week as her sleeping at night got worse because she was so itchy, I called a dermatologist.  Luckily for us, he had a cancellation and was able to see her that same day.  He said the rash on her face was from steroid withdrawal - steroids can do funky things to your skin when you stop taking them (made me feel better that I wasn’t just making it up - it was possible).  He also said the rash on her neck, chest and arms was eczema.  He prescribed steroid cream and told us to use Cetaphil cleanser and moisturizer.  (I so dreaded using steroid cream to clear up a steroid-caused rash.)  The next day Brianna saw her ENT to follow-up from her surgery.  Her ears looked great - but she prescribed an antibiotic to clear up Brianna’s gunky nose because that usually becomes a sinus infection or an ear infection.  We started the antibiotic that night at dinner.  We watched the Orange Bowl and during the game, Brianna developed a fine red rash everywhere - her legs, her arms, her stomach, her back, her chest and her face.  We put steroid cream on and Cetaphil over that and gave her Benadryl to get her through the night.  I called the doctor the next day and held all antibiotics.  He told us to hold the new antibiotic but continue the Bactrim and Macrodantin.  Oncology wants us to use Bactrim until February to prevent pneumocystis pneumonia.  We desperately want to stop.  By Friday of that week after using steroid cream for 3 days, Brianna was becoming our uncooperative steroid monster.  She had started to cooperate for cathing, she has been eating a larger variety of foods - we have had glimpses of our Brianna back.  After just a tiny amount of steroids, she had reverted to being uncooperative and difficult again.  We quit using the steroid cream and kept using the moisturizer and Benadryl and by the end of the weekend, we thought she looked a lot better.  Then Monday we started Bactrim again (we give it only M-T-W) and her rash bloomed again on her face and chest.  Doug and I were convinced that the Bactrim was the problem.   Brianna got to see Dr. O’Brien for her monthly checkup this month and we talked to her about it and she said her counts were high enough that she thought we could stop the Bactrim.  She called Iowa City and we get to STOP the Bactrim a month early.  So now we are hopeful that Brianna’s rash can clear up once and for all.  Frustrating that it feels like it is taking forever to help Brianna to feel better.  But we LOVE being able to see our local doctor!  It is nice to be home!  Other than being distracted by the rash, Brianna is doing well.
• Doug took Zazu hunting last weekend and called me when they were done hunting to tell me Zazu had a seizure.  They were loading up the truck and getting ready to leave when Doug called and Zazu didn’t come.  He was on the ground in a 4-5 minute seizure.  Doug was quite shook up but got Zazu settled in the truck and called the vet.  He drove him to an emergency vet hospital and it was caused by low blood sugar.  The combination of cold weather, lots of snow, a hard working, hard running dog was the perfect combination working against Zazu.  The vet gave him an IV and got his sugar back up, but kept him for the day to be sure it stayed up.  He was so tired when he came home, but we were so happy to have him home.  It was a little too much excitement for the day and not the perfect end to the hunting season for Doug.
• Those are the big updates for now.  Enjoy the heat wave!

• Today was Brianna’s first appointment after treatment.  She was scheduled to go the first week of December and I had to reschedule.  Then she was scheduled the following week, but we had a huge snowstorm.  So we went today - in the rain/sleet.  Brianna is so excited to go to clinic.  Funny how she loves it.  When we got there, the child life team and the nurses were excited to give Brianna her Christmas present.  She carried it around, happy as could be, without opening it until after vitals.  It was a Poochy pet - a puppy in a purse.  She LOVED it!  Funny how she carried it around everywhere we went - we’d get ready to go and she’d get her purse.  First we went to get her echocardiogram.  Brianna started to protest when we went into the room.  We were able to  calm her down, convincing her they were going to just take pictures and she sat very still for most of the procedure.  She did great!  Then we went back to the room and Simeon was in the room next to us having his end of treatment party!!!  Woohoo, Simeon!! Congratulations!  Then the nurses came by with a Barbie for Brianna.  Who needs Christmas?  Then we went to the lab for blood.  Again, Brianna protested at first until we convinced her she was going to get her finger poked just like in Cedar Rapids.  OK.  She sat well and did great.  Dr. Staber came to see her and didn’t have much to tell us about the rash on her face.  She said it could be viral or it could be a drug reaction.  She said to put Aquaphillic on it four times a day and see how it was when she is done with the antibiotics that she is taking for her ears.  No answer, really, just told us to wait and see.  Frustrating.  She was also shocked when I said we needed the paperwork for Dr. O’Brien because we were going to be seen the next two months in Cedar Rapids.  She said she’d like to see her patients for the first six months and then let them go to their local doctor.  But since the staff doctor had already said we could do this, she reluctantly agreed.  We arrived at the clinic at 9:00 and left shortly after 11:00 - not too bad.

Merry Christmas!!!  Stay warm and drive carefully!

I am so proud of Brianna.  She is never afraid when we take these side trips to the doctor.  She has every reason to be scared, but she struts in happy to greet the day and some new people.  Of course, everyone thinks she is just adorable.  She is so cooperative for getting her temperature, blood pressure, O2 sats, and for listening to her heart and her breathing that many commented that she is just too experienced - that statement is just too true.  They reviewed my health history items and we played as we waited for her turn to go to surgery.  I asked on the phone if I would be able to take her to the OR and they said no.  I asked at the hospital and they asked the doctors and everyone was fine with it.  It sounds like this is not their normal practice, but I kind of felt like Doug and I had earned the “experienced” badge and they allowed me to take her into the OR.  (I also think it helped that the anaesthesiologist went to the University of Iowa so was used to this practice).  Brianna held my hand and we walked down the hall to the OR.  She was just so brave!!  When we went through the double doors into the OR suite, she held my hand a little tighter and hugged her bear a little harder.  She started to act nervous and started to cry a little as we walked farther down the hall.  When we got to her OR, she stopped in the hall and started to cry.  I told her she’d be ok and picked her up to carry her in.  When the doctor was ready, I put her on the table and held her hands while the doctor gave her the gas.  It went so smoothly and I so appreciated first of all, being able to be with her until she fell asleep and secondly, that this doctor had her lying down when he gave the gas.  Other times, she has sat on my lap and then she gets very heavy when she goes limp so I usually need help lifting her onto the table so we can protect her head.  It went very well with her lying down this time - and she could see me instead of just feel that I was there.  The doctor came to tell us he was done about 15 minutes later - amazing how quickly it went.  He said her ears didn’t look too bad, but the right ear did have fluid so he drained it and will culture it.  He decided to put in round tubes because they fall out easier on their own - and I think he would like to avoid future sedations if he can.  He told us we needed a break because she’s a sweet girl and has been through enough.  Can’t disagree with that!  Then they came to get me to join her in the recovery room.  She gets so mad when she comes out of anaesthesia.  She was wanting me to hold her and pushing me away at the same time.  She sounded hoarse and wanted to cough something up, but nothing came.  The nurse even told me how sweet she was as she was in this mad mode.  I told the nurse that she really is sweet when she’s not like this.  Her response was that she’s seen LOTS of kids come out of anaesthesia and she could tell Brianna was sweet.  :)  When the doctor came to check on her, she started clapping and gave him a thumbs up - she knew he was responsible for this and now it was done!  Once she calmed down, we went back to the room to join Doug.  She did great once she got over that hump.  We left the hospital probably less than 2 hours after surgery.  Excellent!  We spent the rest of the day trying to get her to allow herself to sleep.  She ate some popsicles because I think her throat was a little sore.  Then she kept asking for more food items - more popsicles, juice, chips, chili, crackers, etc. - if she has something in her mouth, then she wouldn’t fall asleep.  By evening, she was exhausted!  Hopefully she has a restful night tonight.  It feels good to have that behind us now.  We hope this helps her ears and her balance issues that have maybe been off with fluid in her ears this last two months.  She really is such a trooper!  She made me very proud today - she is a great patient! 

 Don’t know if I’ll have time to update again until after Christmas so - Merry Christmas!  Stay safe with potential bad weather and enjoy time with your families!

We got a call from St. Luke’s Hospital today that the surgery is still on for Monday, but it will happen at the hospital instead of the outpatient surgery center.  Whew!  I was worried it would be rescheduled.  Brianna really needs to have this done so she can start healing.  Now I just need to get my shopping, cards, baking, wrapping, etc. done for Christmas.  I can’t believe it is in a week.  I am not ready yet.  So, instead, I need to stop and remember that the true meaning of the season is not that I get these things done, but to remember that God gave us the the true gift of Christmas.

• The plan for yesterday was that Kate (Parents as Mentors student) would come to Cedar Rapids after her final and we would go observe Brianna at school and then OT at 5:00.  That did happen, but with a lot of other activities as well.  The kind of day you just can’t predict….
• First, the Surgery Center called to ask me Brianna’s health history so they have the information they need for her surgery on Monday.  Well, Brianna’s health history is not short - and it is complicated.  I answered all of their questions and he commented that she has been through a lot in her short life.  Then the last question was about MRSA and VRE.  I think I surprised him by saying that yes, she was positive for VRE.  Oh.  He said Brianna may not be able to have surgery at the outpatient center, but instead with her VRE status, she’d have to go to the hospital.  So I said I would try to get a VRE test done that day.  He said he’d figure it out and call me back.  So I called Dr. O’Brien’s office and left them a message that I needed orders for a VRE test for Wednesday (it takes three days to read the results - which takes us to Saturday and her surgery is scheduled for Monday - we didn’t have time to waste).  The surgery center called back to say she would have to have the surgery at the hospital because of her health history, they still wanted a VRE test and they’d call me when they determined if she could still have surgery on Monday.  In the meantime, I found out that the lab cannot do the VRE swab, but it has to be done by a doctor so I called Dr. O’Brien’s office again.  Erin called me back several times to coordinate which lab could do the reading and she got Brianna in to see a doctor after school for a quick swab.  When Brianna saw the doctor holding the swab, she completely knew what was going to happen and she was not a bit happy about it.  She got a sticker and somehow calmed down and was completely still for the swab.  It was a quick appointment - and then we delivered it to the lab because the office didn’t have a courier to the lab that could do this test the fastest.  When we went to drop it off at the hospital lab, we had to wait to register for over 30 minutes.  When we arrived at the lab, I was perfectly comfortable that we had plenty of time to get to Brianna’s 5:00 OT appointment and we’d probably even have time to stop for food.  Well, we were late to the OT appointment because we couldn’t just drop off the sample - we had to register first.  Ughhh!  So we have the process moving along and now we just wait - for results and to find out where and when her surgery will be.  Stay tuned.
• After I got the health history questions answered, Kate came and we went to the school to observe Brianna.  Brianna thought she was going home with us, but decided it was ok to stay.  We got to see her practice her writing in the classroom and practice her letters (She knows 16!).  Her classmates are so sweet!  It just warms my heart!  Then she had speech, which would have been great for Kate to observe, but Brianna has a group session on Wednesday afternoons and had I realized ahead of time, I would have asked the other parent for permission for Kate to observe, but I didn’t even know who the other student was until I saw her walk into the classroom.  Oh well.  I got to speak with her speech teacher and Kate followed Brianna to art.  I think it worked out well that I didn’t go along because I’m too much of a distraction for Brianna.  So I stayed and talked with her teacher and helped glue some pages for a project while I waited for them to come back.  At the end of the day, Brianna works with the special ed teacher and then collects the daily summaries from the other associates, helps copy them and pass them out again.  It was so cute to see how Brianna knows this routine and LOVES it.  It is clear she is happy to have this helping task and feels very important to be helping.  It makes me happy that they find little things like this for Brianna to do to be a part of the day.  School really is a good place for Brianna.
• OT went well.  She is still getting OT once a month but will hopefully start back to once a week in the new year.  She had a speech evaluation last week in the snow storm so we also hope to be starting up weekly speech as well.
• Brianna has had this rash all over her face from steroid withdrawal for a while now.  Well, last night she also had bumps on both wrists and a few on her shoulders.  I have no idea if that is an extension of the steroid issue to different parts of her body, or if it an allergic reaction to something or something completely different.  Don’t know.  Just want this to go away!
• Brianna started her FIFTH round of antibiotics.  She had completed the fourth round and seemed better, but the school called me on Monday to tell me she would not leave her hearing aids in and that she was pulling at her ears.  They looked at her ears and, sure enough, red again!  She REALLY needs these tubes so hopefully she can still have surgery on Monday.
• Brianna slept through the night - TWO nights in a row!  The first morning, Doug and I woke up and said, “It’s 5:38!”  She was up at 5:00 am the next morning, but she didn’t wake at all during the night.  Hopefully this is progress and not a fluke or caused by something else.  But we’ll take any night we get to sleep!
• It was a crazy day, but also probably a good day for Kate to spend with us.  Thanks, Kate!  I appreciated your help and company throughout the crazy day.

• Brianna had her per-surgery physical today.  She still has fluid on her ears so it will be good to get the tubes and adenoids removed.  She is talking so much more.  The doctor even commented today that she hadn’t heard her talk so much before.  Brianna very clearly said, “All done” in the office.  We also stopped to have her counts checked just to make sure everything looks fine for surgery.  This was the first CBC since she completed treatment.  Her counts were:  Hemoglobin 13.9, Platelets  274,000, WBC  5180 and ANC  3781 (73%).   These counts are pretty good - but her white count is not normal yet.  It will take a while to come back.  I also don’t think they consider her to have a “normal” immune system for a year after treatment.
• At the lab, the patient before Brianna was a little girl that was VERY upset about getting poked.  She screamed and yelled and cried.  I felt so bad for her and it made me uncomfortable to sit in the waiting room to hear this.  Brianna could even hear her cry and started to yell a bit.  We played our doctor’s office version of “Simon Says” and were jumping and marching in the waiting room and finding colors on the posters to keep us both distracted.  The person doing the poking came out of the room breathing deeply.  They have a very hard job - they are ALWAYS the bad guy.  She made a comment about hating to miss - I told her that they don’t miss very often.  That is why we go to this lab - they do a GREAT job of hitting the mark even under stressful circumstances.  Anyway, that same person drew labs on Brianna.  My theory was that the other two people know how easy it is to take blood from Brianna so they let the one that missed earlier take blood from Brianna.  My theory is that Brianna was a sort of confidence booster.  She sits all by herself, cooperates for the blood draw and then gives a thumbs up.  She is a model patient - at least for this procedure.  I know how hard it is to have to hold her down for unpleasant procedures so I can understand both sides.  I left the lab thankful that Brianna and Emma are such a good patients.
• Stay warm!

• Brianna has been off treatment now for just over a month, and though we are happy she’s done, we still have a ways to go.  She is not acting like she no longer takes that yucky medicine, in fact, I think she is having a difficult time now without it.  She still very much acts like she is on chemo.  She is eating her same steroid obsessive foods - we are still hoping she’ll eat a wider range of foods once she gets this out of her system.  She still has steroid rages - more frequently actually - she is grumpy all the time and throws herself on the floor in tantrums.  Sleeping has actually gotten worse, if that is possible.  The poor kid is just so restless that she is not able to sleep.  We bought her a weighted blanket recently to try to help settle her little body down at night.  Some nights I think it works - other nights I don’t.  I was hoping it would be magic, but it is not.  She has been getting up faithfully at 5:00 am and the rocking usually starts around 4:00 am.  She has been fighting getting cathed with all her might.  She is getting so strong that it really is getting difficult for us to handle.  Just over this past week, she has started to cooperate more with this - hopefully this is a sign that things are going to start to improve.  She has a horrible rash all over her face.  She would get a small rash on her chin and around her mouth every month of treatment, but now it is on her neck and cheeks and nose and near her eyes and is starting to show up on her forehead.  We didn’t get too concerned when it first showed up because it looks just like the one she got every month, but we started to worry as it got worse.  We do believe it really is from the steroid withdrawal because it looks a little like acne.  We’ve been trying to put lotion on to keep it from itching her and it seems to help, but this is another thing we are ready to be done with.  We’ve been reading on internet forums and talking to other parents and it sounds like this is all part of the first three months of recovery. It really does seem to be hard on their little bodies to have this strong medicine for so long and then to just stop.
• Brianna has also been struggling with an ear infection that started in early November before she was done with treatment.  She has now completed four 10-day doses of different antibiotics and she still has fluid in her ears.  She saw a local ENT a couple of weeks ago and she is scheduled to have another set of tubes put in her ears and her adenoids removed on December 21.  They gave her the fourth antibiotic to keep her feeling well until her surgery.  Poor kid just looked terrible with the rash on her face and a stuffy nose and watery eyes that she could hardly keep open.  This last antibiotic seems to be helping with her stuffy nose so she seems to be feeling better.  One more week until surgery - hopefully that will make a difference.  He is going to put T-tubes in, which I believe are the tubes that have to be surgically removed.  He doesn’t want them to fall out prematurely.
• We are celebrating this holiday season.  If you get a chance, visit the Tannenbaum Forest at Amana.  I believe Santa is there and lots of beautiful Christmas trees.  The proceeds benefit Make-A-Wish.  We haven’t visited yet, but it is in our plans.  Also, please visit the Chase Charity Giving web site and vote for Songs of Love to receive some funding.  We recently received Brianna’s song from them and love it.
• Enjoy the Holiday Season!  Stay Warm!

• More about the big party - it was overwhelming, which is why it has taken me so long to write about it.  I’m not sure how to put my feelings into words.  Just planning for the party was overwhelming - we were shocked at the response.  We were just so touched by the many people that took time out of their busy lives - and we know everyone is busy - to come celebrate with us for our little girl’s big victory.  Thank you!
• A perfect centerpiece for the party!
• 
• We rented a jumpy castle for the kids and had other carnival games and crafts.  Brianna would have liked it all, but she LOVED the jumpy castle and didn’t get out of it very often - just a couple of times to eat some chili and get a drink.
•   
• We had a lot of kids come to the party, which is exactly what we hoped (of course, we wanted the adults too!).  Brianna has only been in school for a couple of months and more than half of her Kindergarten class came to the party.  I was so touched that they were so excited for Brianna!  She has a sweet class!  I think it was a little confusing to Brianna that she recognized a lot of the people but they were not in their usual settings - preschool/school, therapy, swimming lessons, etc.
• 
• 
• 
• 
•  
• 
•  
•  
• 
• 
• 
• 
•  
• 
• 
• 
• 
• 
•  
• 
• It was also special that Doug’s aunt and uncle came from Missouri to celebrate with us.
•  
• Emma and Brianna wore their Christmas dresses (that we bought the day before) to the party and looked so pretty.  You could tell Brianna felt special in her pretty dress.
• 
• Keri made it possible for Doug and I to enjoy the day without worrying about Brianna.  Brianna got to have all the fun she wanted and Doug and I were able to visit.  Brianna adores Keri - I don’t know what we’d do without her.  Thank you, Keri!
• 
• We had a video of the last two and a half years and it made me sad when we were putting it together. Brianna has grown up so much and she has been through so much and she has come so far.   She is an amazing girl!
• Our “guest book” was a Thankful tree that was filled with leaves by the end of the day!  We truly are thankful for all of you that helped us get through this difficult time.  Thank you for supporting us and for keeping us in your prayers.  It truly was a day to celebrate.  Thank you for being part of it!
• 
• A family picture.  We did it!

• Brianna had a great time at her party this past weekend, but she had a rough week.  She should have been very tired after all that bouncing in the jumpy castle - and she was.  She fell asleep easily, but hasn’t slept well all week.  She hasn’t slept well for over a year so this isn’t a new thing, but I was hopeful that this would get better once she stopped taking chemo.  I realize it was overly optimistic to believe that she’d start sleeping better immediately.  And this is typically a bad week for her anyway from steroid withdrawal.  Other families have told us that it takes about three months to get rid of symptoms from the chemo.  Her body has had this medicine routinely for a long time now so it makes sense that her body will react to not getting what she is used to getting.  So I don’t know if it just feels like this week she is sleeping more restlessly than usual because we wanted her to sleep better, or if she really is having a harder time with sleep this week, but either way, she’s having a rough week.  I get grumpy when I don’t get enough sleep so I can understand that she is too.   Hopefully things start to turnaround for her sooner rather than later.

• Brianna has also been battling an ear infection.  She has now completed twenty days of antibiotics  - yes, 20.  The first ten days of antibiotic didn’t get rid of the infection so she took a different antibiotic for another 10 days.  I’m not convinced that the second antibiotic worked either  - and at a recheck on Friday, she still has fluid.  So she is on a third antibiotic.  Hopefully this will take care of it.  All of this antibiotic is also causing her to have diarrhea and a very sore bottom.  Poor kid needs a break!  We’re going to give her probiotics to hopefully help her sore bottom - they didn’t want us to give her probiotics during chemo, but now that she is done, hopefully it will help.

• Brianna fell and scraped her back on the risers in music class (and she knows she is supposed to sit on the bottom row) early in the week.  Then Friday, I got a call that Brianna had fallen off the top of a 15′ slide.  My heart sank as I gasped!  She was ok, but they wanted me to have her checked by a doctor to see if she had a concussion.  And we were an hour away from Cedar Rapids!  They said they’d watch her until we got home and when I called after we got home, they thought she was acting like herself and not acting like anything hurt.  She has some scrapes from the wood chips on her face, but otherwise, nothing - not even a bruise has shown up yet.  Brianna is definitely watched by guardian angels - they carried her to the ground safely.  She scared us and she scared the school staff too!  Even her classmates were worried about her.  We did have the doctor check her out when we were there having her ears checked and she is doing great.

• Doug and I went to Darrin’s funeral (we were on our way home when the school called) yesterday.  My heart aches for his family.  Too many kids are taken too young.  It was a beautiful Celebration of Life and it was clear he had touched many lives.  We are honored to have known Darrin, if only for a short time.  Please continue to keep his family in your prayers, especially as the holidays approach.

• …for taking Brianna safely to the end of treatment,
• …for giving us strength we didn’t know was possible,
• …for teaching us patience,
• …for reminding us to notice Your miracles every day,
• …for the supportive people too many to list that helped us through,
• …for the health care people that take care of Brianna,
• …for teaching us how to advocate for our daughter,
• …for introducing us to other amazing, strong kids fighting the same battle and for showing us your presence in their lives as well as our own,
• …for Brianna’s enthusiasm for life and ability to quickly forgive,
• …for Emma’s ability to understand, support and love her little sister even on steroids and for her strength to thrive even in the face of adversity,
• …for a supportive husband and loving father,
• …for jobs flexible enough to allow family to come first,
• …for health insurance,
• …for a dog that likes to cuddle and be cuddled,
• ..for carrying us every step of the way - even now when Brianna is done with treatment.
• Amen