Because I’m starting this now, I’ll give the timeline of how we got where we are today.  I plan to be wordy so just read what you want.

Monday, November 14, 2011 - annual physical.  I felt good, had no concerns except that I wanted to have my hearing checked.  She told me I’m at the age when they order mammograms every year, am I ok with that?  I said yes.  For some reason as I write this I realize I’ve always been diligent about getting the needed annual physical exams which includes mammograms and when she asked me, in my head I thought, “Of course I want a mammogram.” 

Wednesday, November 23 (day before Thanksgiving) - had my mammogram.  I remember the day vividly.  I worked later than I intended because I had to get something done then stopped at Home Depot before arriving at my appointment a little early.  It was the day before a holiday so I asked the mammographer if it helped her go home a little earlier if she got done with me earlier (my appt was for 4:00) - she said no and we discussed the holidays and travel and family. 

Monday, November 28, 2011 - Got a call back from the Radiology office saying I needed to schedule a diagnostic mammogram and an ultrasound as I was driving to work that morning.  A moment of panic but I asked to be scheduled as soon as they could get me in.  I have been having annual mammograms since I was 39 - I’m 42 now so this is my 4th annual mammogram.  I have been called back for diagnostic mammograms before so this wasn’t too alarming, but an ultrasound - this was new and a little concerning.  My mom is called back for diagnostic mammograms every year because she has dense tissue so I mostly figured I had the same issue. 

Thursday, December 1, 2011 - diagnostic mammogram and ultrasound appointment.  They only do diagnostic mammograms between certain hours so I knew the lady sitting back in the waiting area with me was also there for a diagnostic mammogram.  They have two ladies waiting near one machine.  We sit with our silly capes that feel like they don’t really cover reading (or pretending to read).  I smile when I think about this - I’ve done it before and it feels so funny.  Anyway, I was reading on my Kindle and the mammographer (the same one that did my first mammogram) asked me if I liked it because she was debating the Nook vs. Kindle for Christmas gifts.  We had this discussion.  Then the other lady waiting and I talked.  She is a breast cancer survivor and had felt a lump so was there to have it checked out.  She told me her husband had some severe health issues and she was a traveling home nurse.  She was called to do her mammogram.  I said a prayer for her.  A complete stranger and I connected over a similar fear.  Then I went to do my mammogram - more Christmas shopping discussions.  I waited again and the other lady was called for an ultrasound.  The radiologist read my mammogram and decided that I too, needed an ultrasound so I was taken to the ultrasound area.  The sonographer was very quiet but answered my questions.  I could see the lump on her screen.  Then she started to scan my armpit and I knew they weren’t going to have good news for me.  The radiologist came in and repeated much of the ultrasound and told me I’d  have to have a biopsy.  I asked if he could do it today - he said no.  I think I left sort of knowing it must be cancer because of the uneasy feeling that nobody offered any other options.  Texted Doug and my mom while waiting for scheduling to let them know I had to have a biopsy.

Friday, December 2, 2011 - Had biopsy.  Doug was planning to go to western Iowa to go hunting, an annual trip to meet a friend, but he cancelled his trip so he could go with me to the biopsy and help me with the girls over the weekend because I wasn’t supposed to do any lifting for a couple of days.  Had the same sonographer, a different radiologist and the same mammographer.  They injected numbing medicine so it didn’t hurt, but the tool they used to take the biopsy made this awful click - which sounds really mild, but it was like an air compresser “bang” when he took the sample.  I did fine through the first two, but when he said he was taking a third sample, I got nervous because of the dreaded noise.  Melissa has some biomedical engineering friends looking into replacing this technology - crazy that the noise was the worst part of the biopsy.  This doctor also didn’t offer any explanations besides cancer.  They placed a marker into the biopsy site and then took more mammograms so they could find the biopsy area in the future.  Doug said the government was just tracking me… :)  They said to expect biopsy results next week.

Tuesday, December 6, 2011 - Before Thanksgiving Doug and I decided that we should take a day off work and do power Christmas shopping - get it all done in one day.  So I studied the calendar to find the day we should shop and December 6 called to me.  We scheduled our shopping trip and arranged care for the girls.  We took Emma to school that morning, took Brianna to speech and when we were dropping Brianna off at school, my doctor called.  When I answered, I knew that because it was her, it wasn’t good news - if it had been her nurse, it would have been fine.  She asked if I had time to talk and I said no because I was just walking Brianna into the school. I was really anxious to get Brianna into the school so I could call her back and Brianna can take her time some days - this was one of those days.  I called the doctor back while we were in the car and Doug really wanted me to put it on speaker so he could hear too.  She said she said a few choice words when she read the report then called me right away because she knew I’d need to get moving on taking care of it right away.  The full pathology wasn’t back, but it was breast cancer.  I love our doctor and was glad I changed to having my physicals with our family doctor instead of my gynecologist a few years earlier.  She had her nurse make appointments for me to see an oncologist which couldn’t be scheduled until the next day.  Doug and I had our moment, called our parents, sent an email or two and then decided that we should go shopping in Des Moines that day anyway.  We didn’t get it all done and we got some extras, but we made huge progress.  We had fun but were quite distracted. 

 December 7, 2011 - met with oncologist for first time.  I see Dr. Erin Casey and I love her!  She told us she writes everything down as she talks so we didn’t need to take notes - and then she sent her notes home with us.  She took all the time we needed answering questions and explaining the process. Diagnosis:  Invasive ductal carcinoma, estrogen receptor positive, progesterone receptor positive, size less than 2 cm (ultrasound had 9 mm and biopsy had 11 mm), no suspicious lymph nodes - when you get past the breast cancer diagnosis, these are all good things.  She told me that breast cancer is as individual as the women on the planet so keep that in mind when I get advice from other people.  She told me that there is no medical reason for me to have one type of surgery (mastectomy vs. lumpectomy) over another so the choice is completely mine.  She gave me the list of reasons why I would choose one type of surgery over another and left it to me.  She set up an appointment for me with a surgeon and I said I’d just like to have the appointment ASAP.  Because both my parents and my daughter have had cancer, she also set me up with an appointment with a genetic counselor.  I left the appointment hopeful.

December 9, 2011 - Surgical consult.  Dr. Keri Nowell did an exam and agreed with Dr. Casey that either type of surgery would work for me.  I told her I’d like to schedule a lumpectomy pending the results of my BRCA1/BRCA2 results.  She was very nice and very passionate about her work.  She spent time with us explaining each procedure.  She was very confident - we left agreeing that you definitely want a surgeon that is confident!

December 12, 2011 - Met with Julie, the genetic counselor.  She did a questionairre and asked me questions about my family history and when we were done discussing the results, she said it was not likely that I would have the genetic mutation BRCA1/BRCA2 that is linked to breast and ovarian cancer.  She also ran a computer model based on my history and came back with a 1-4% chance that I had this mutation.  She said they don’t recommend testing unless the computer model results in >10% chance.  But since our insurance covered the test, I told her I’d feel better just knowing if I had it or not.  The results would change my surgery decision and I’d likely also have a hysterectomy.  And if I did have it, my sister and my daughters would need to be tested to know if they had it as well.  So she drew blood and sent it off for testing.

I also met my Breast Health Coordinator, Mona, that day.  She explained her role as a resource for me through the entire process and she gave me several contacts.  What a nice service!

December 15, 2011 - met with my Radiation Oncologist, Dr. Janet Merfeld.  I wanted to meet with her before my surgery so I could change my mind if I felt differently about radiation after I met with her.  I have a friend that is a radiation oncologist at the University of Iowa so I had talked with her about it and she was able to answer a lot of questions for me - so I went into this meeting pretty sure I was ok with radiation.  I also like her.  She explained the process and side effects.  She did an exam and agreed with my oncologist and surgeon that either type of surgery was ok for me.  She went through what we knew to date about my cancer and guessed I would be a Stage I.  She was the first doctor to tell me that she thought lumpectomy with radiation was a good choice for me - which I appreciated because up until this statement, everyone had told me it was entirely my choice - a stressful choice, indeed. I left feeling pretty good about my choice for type of surgery with radiation.  Of course, my decision was still pending the results of the BRCA1/BRCA2 test.

 December 20, 2011 - Results of BRCA1/BRCA2 testing.  We met with Julie and she said right away when we sat down that she wouldn’t make us wait - my results were negative.  I don’t have the BRCA1/BRCA2 genetic mutations!!!  Yeah!  When I took a deep breath, I realized I was nervous about it.  So my family doesn’t have to be tested for this.  Good news!  And just in time for my surgery tomorrow.

December 21, 2011 -Surgery day.   I was really nervous today.  We spent the morning doing laundry, cleaning up the house, going for a walk and generally trying to keep my mind off of the surgery.  We had to arrive 4 hours before the surgery, so 11:30 for a 3:30 surgery.  They did all the admit stuff, I changed clothes, got an IV started, etc.  Then I headed over to the Women’s Health Center for the pre-surgery prep.  They biopsy the sentinel lymph node with every surgery so they inject radioactive dye at least 2 hours before surgery so they can see which lymph node drains the area.  Since this is the first lymph node to drain the area, they test it first and if it has cancer cells, they take the rest of the lymph nodes in the arm pit.  Lymph nodes are like a pearl necklace (I liked that analogy) - if the first one is clean, the rest will also be clean.  I also learned that there is not a set number of lymph nodes in every person - and we are not necessarily symmetrical.  I might have 8 lymph nodes in my armpit and someone else might have 14 - or I might have 14 on one side and 8 on the other.  I had no idea!  See - a learning experience!  Anyway, my first stop was to have the dye injected.  It burned going in and they didn’t give me numbing medicine for this, but it was short-lived.  Then I went next door to have a needle localization.  They placed that marker during my biopsy, so now the radiologist inserted a needle next to the marker so the surgeon could take out the chunk of tissue that contained that needle.  Luckily they did give me numbing medicine for this procedure.  Turns out it was the radiologist that also did the ultrasound and told me I’d need to have a biopsy.  And the sonographer that assisted I also knew - I think we figured out it was because she had performed ultrasounds on me when I was pregnant with Brianna - and she has a sister with Down syndrome.  Small world - I felt like I knew everyone!  Oh, and Mona assisted as well.  During the needle placement I was teary and obviously nervous, I felt out of control and that this was real - I really had cancer.  It was nice that Mona was there to help calm my nerves.  Once the needle was placed, I needed to have a mammogram to confirm that it was placed near the marker.  Because my tumor was deep to my chest wall and far out from the center of my breast almost in my armpit, it was hard to get a good picture.  The mammographer took 3 films and then they got me settled in the wheelchair again (which I was thankful for because I hadn’t eaten for a long time and was feeling weak) to wait for the radiologist to review the films.  He wanted one more film - the mammographer said this time I’d have to stand on my head.  I was really thankful I had numbing medicine because I am sure this would have been painful otherwise.  It was very strange to have these X-rays with a needle sticking out of my chest. After the final successful film we headed back to the surgery center.  Because I was so visibly nervous, the nurse said she’d talk to the doctors and get me some medicine to calm my nerves.  The anaesthesiologist came to see me and asked me a ton of yes/no questions, said he’d take care of me and walked out - not the best bedside manner.  But he did tell me he’d give me some Versed.  I’d never had it and Brianna took it every time she had a spinal tap so I was curious if it worked, if it really does make you not remember what happens to you.  The surgeon came to see me and used a Geiger counter to see if the dye had traveled to my lymph nodes which meant I was ready for surgery.  Pastor Tim was there as well which I really appreciated because I was so nervous.  I am a healthy person and have only had surgery for tonsils when I was in high school - a long time ago.   I took Versed as they wheeled me into surgery and the only thing I vaguely remember was someone asking me to slide over.  So it does work- which made me happy for Brianna.  The only thing I remember about being in the recovery room was that I asked the nurse about my lymph nodes and she told me they were negative - I said, “Thank you, thank you.”  Then I asked her about my lymph nodes and said a prayer of thanks.  And again … and again.  Poor nurse - I must have asked her, “now did you tell me my lymph nodes were negative?”  a hundred times.  I remember feeling like it took me forever to not feel out of it.  I was nauseated when I tried to sit up so they gave me Percoset and everything started spinning and I felt more nauseated.  Surgery took 1 hour and 45 minutes and it was a surgery late in the day so they said it usually does take people longer to recover with those conditions.  I was one of the last people to leave for the day, I ate some soup at home and went to bed.  I took pain medication for two days and slept quite a bit both days because the medicine just knocked me out.  I felt MUCH better when I stopped taking it.  I was able to go to church Christmas Eve with an ice pack and took it easy during our Christmas celebrations, but overall, I did pretty well. 

December 29, 2011 - Pathology results didn’t come back until today because of the holidays.  Good news - no lymph node involvement!!!  Unfortunately, one margin was still involved so they recommended I have another surgery to excise more tissue.  With a lumpectomy, I knew this was a risk and it happens that they have to go back for more tissue 1 in 3 times.  Though I was disappointed, I wasn’t upset with this news and scheduled the surgery that day because the surgeon wanted to use the same incision. 

Doug and several other people have asked that I create a blog so forthe reasons listed below, here we go:

1.  We liked the documentation of Brianna’s journey.  Doug got Brianna’s blog printed into a book that we go back and read every now and then and are amazed at what we went through that we didn’t remember.  So we also want to document my journey.

2. It is an easy way to keep everyone updated so I don’t get behind on responding to emails (which has already happened and I’m sorry if it is your email that I haven’t responded to).

3.  It is therapeutic for me to write. 

 Where we are today:

I have had two surgeries:  The first to remove the tumor and the surrounding tissue and the second to remove extra tissue because the margins were not clear from the first surgery.  The tissue removed from the second surgery had no cancer in it.  They genetically test the tumor to get an idea of how it will behave.  Research has correlated a low score on this test to cancers that show little benefit for getting chemo (overtreating and giving chemo where it is not needed).  A high score on this test means chemo is beneficial.  And an intermediate score requires a decision.  My result was at the higher end of intermediate - and because I’m young, my doctor didn’t make me make the decision (I was very thankful for that!), she simply said I should have chemo.  My result means there is a 1:5 chance that cancer will come back within 10 years in a form less treatable than it is now - odds too high - so we are making those odds better with chemo.  I start chemo February 2 - four treatments every 3 weeks - heal for a month - radiation 6.5 weeks and then take Tamoxifen for 5 years.  I’m ready to get started and get it over with.  I feel like right now everything I put on my calendar I qualify with … “well, I’m not sure how I’m going to feel so I might need to cancel at the last minute.”  Or maybe I’m just making poor choices by putting stuff on my calendar the first few days after chemo - but I figure I’ll just plan to continue with life as usual until I need to take a break or ask for help.  So we’ll see how it goes and take it one day at a time.  I have lots of lessons to learn on this journey. 

I think I’ll stop with this right now.  I plan to go back and update from the beginning so will add more later.

Today I’m thankful for:  a quiet morning hour to blog, a good night’s sleep, good friends

Sara

• The chiropractor that I work with on Brianna’s diet and supplements told me that a naturopathic doctor was coming to town and was offering consultations for a small fee and she suggested this might be one more avenue for me to explore for Brianna - maybe he had more ideas that might help her.  So I called to get an appointment and none were available - until we got a call Saturday that they had a cancellation.  We took Brianna to see him and he took a drop of her blood and looked at it under black light microscopy while it was still live.  VERY COOL!  We got to see her blood on a screen. 
• The first thing he pointed out was the black bouncing bacteria in her blood.  He said she was obviously fighting an infection.  She had spent the week prior to this with croup and was on antibiotics for a sinus infection - so we knew she was fighting an infection - kind of alarming to actually see it. 
• He pointed out that her red cells were stacking up and kind of sticky when they should be completely separate. Another sign that she was fighting an infection and she had low electrolytes.  He said she needed fluids and electrolytes while she was ill to help her blood be less sticky. 
• He showed us lymphocytes actually attacking the bacteria in her blood.  Very cool to see them in action!  He said they had good mobility and were doing what they were supposed to do.  He also showed us an active macrophage (another white cell) that was also performing its role in fighting her infection.  He said it appeared her immune system was functioning as it should be - both visible to him on the live view and the dry stain.  Good news to hear!
• He said Brianna was a little bit anemic because her red cells were different sizes - he showed us that some were smaller than others.  If she had enough iron, they would all be uniform.  He suggested a better way to get iron in a more usable form was to eat raisins or take black strap molasses.  The type of iron from these sources interact with Vitamin B12 to result in the usable iron we need.  I didn’t know that. 
• Brianna had some egg-shaped red cells which he said suggested that she had recent periods of hypoglycemia.  With her blood tests last month also showing low blood sugars, this also fit.  We need to work snacks into her routine to bring her blood sugars up.
• Some cells had a little tag on the top and he said these cells suggest that her gall bladder is stressed.  Brianna has had gall sludge since birth and had to take enzymes to help the flow through the gall bladder for detoxification of the chemo.  This also made sense. 
• He said she had a small amount of yeast - lower than is typical of kids that eat too much sugar.  He was not at all concerned with yeast overgrowth for her. 
• He showed us a couple areas that suggested she had adrenal stress on both the live sample and a dried smear of her blood.  The adrenal stress could be from the low blood sugars that were stressing her pancreas.   Everything is connected. 
• He said she is getting a good amount of Vitamin C from the dried smear of her blood.
• He is concerned that she is not getting enough iodine.  Autoimmune disorders happen when there is a weak immune system - and ALL is an autoimmune cancer.  He put a drop of iodine on Brianna’s arm and if she had enough iodine in her system, it should stain her arm for 48 hours.  Her stain was almost gone a few hours later.  So he suggested we give her a few drops of iodine daily until the stain is no longer quickly absorbed.  This mineral is important for the immune system.  
• He also said that plant sterols boost the immune system.  Because our food supply is so overprocessed that we no longer get the plant sterols that we once got from diet.  Glyphosate is such an effective chelator that it takes out even the good plant sterols.  So he also suggested we give her plant sterol supplements. 
• It was a very fascinating visit.  Even Doug and Emma were interested.  Emma hypothesized what we might see if we tested her blood (she said she wouldn’t have any of the egg-shaped cells that suggest low blood sugar. )
• The biggest take-home message we got from this was that we are doing lots things right for Brianna.  I’m interested to look at Brianna’s blood again sometime in the future to see if things have improved. 
• Doug wondered why regular physicians don’t do this type of testing - and I believe the answer is cost.  Labs get lots of samples at once and to read it live needs to be done immediately. 
• Lots of information in a short 30 minutes - very worth our time.

• Brianna is having such a hard time right now and I feel like we are doing everything we can do to help her but I’m still looking for other options.  I’m giving her some vitamin supplements that contain extra B-vitamins (kids with some of Brianna’s issues have levels of the B vitamins that are too low), she sees a chiropractor, we are doing occupational therapy, we are trying aromatherapy to calm her down, we’ve changed her diet.  We think these things are working - because we notice when we don’t do them - but we aren’t seeing the changes we want to see.  So I called the office of Dr. Ahn to ask if she is a candidate for acupuncture.  They said I should come talk to Dr. Ahn to see what he thinks - and if he doesn’t think she is a candidate, we go home.  Today Brianna and I met with Dr. Ahn.  I have to admit that as I sat (actually, I didn’t really sit - more like chased Brianna around the waiting room), I debated walking out of the appointment.  If I couldn’t even keep Brianna calm in the waiting room, how would I ever keep her calm to get needles poked into her?  We made it back to the exam room though and it was a nice calming room.  Brianna put a pillow under her elbows on the table and watched her video.  I told him this was a moment of calm for her - it was nice.  I explained to him her lengthy health history and he immediately saw why I would be concerned about her nervous system.  He understood her sensory issues and her food sensitivity issues and … he just understood why I was there.  He told me she would need full body acupuncture to address the sensory issues and that he thought she would not tolerate it.  Then he debated trying 5-7 needles on her scalp to help calm her down - but again decided that she wouldn’t understand what he was doing and would likely try to remove the needles.  Then he said that he has ordered a laser machine that works well for kids.  The needles are stronger, but children are more sensitive so have a positive response to lasers.  Then he gave me a hand-held laser that he suggested we try for one month on her scalp at night.  He explained how safe it is and that worst case - it doesn’t work, but it will not harm her.  He wants to see her back in one month when he has his new laser machine.  I asked if he thought he would be able to help her and he said he could definitely help the sleeping issues and he could help her food sensitivity issues and he also thought he could help her sensory issues, but she would need to cooperate for that.  So it could be a long process to get Brianna accustomed to this.  I left the appointment today having HOPE.  Dr. Ahn gave me hope that he could help Brianna.  He understands the challenges, but he seemed willing to work with us.  So, one day at a time, but today I have more hope than I’ve had for a while.

As I struggle with Brianna’s issues post treatment, I feel guilty for struggling.  At least I still have Brianna to be a challenge.  Many mom’s do not have this challenge and would give anything to have it.  So I realize I have a lot of reasons to be thankful.  Brianna no longer has cancer.  So please continue to pray for all those children fighting cancer and for their families - and for the families that have lost their children. 

Here I am again way too far behind so prepare for a long update……

A few vacation pictures: 

Brianna had her Miracles in Motion Horse Show this fall.  She LOVES to ride horses.  She was all business at the show too — she just stood near the mounting platform and watched everyone get on their horses until it was her turn to get on.  She participated in two events - Walk-Trot riding Red and got a 5th Place Ribbon and Pole Bending riding Jasper and got a 1st Place Ribbon!!!  That event required her to weave around the cones.  She loves steering and it was a fun event to watch - it really came down to the last second and ended in a tie between the two riders.  She was very proud!  Emma participated in the sibling event and got to groom and dress-up a pony. Her pony was named Tupelo.  She did a great job grooming and gave him some braids and ribbons.  Such a patient pony.  All the siblings got blue ribbons.  It was a beautiful day and we had a nice time.

Now that Brianna is back in the routine of wearing her hearing aids, she asks for them all the time.  She wants them on first thing in the morning and asks for them at the bus stop when she gets home.  I think she is excited to hear things again and now knows it won’t hurt her to wear them.  She is vocalizing a lot more again too.  I think she is very motivated by her peers and wants to be able to communicate with them.  I have recently heard her say boat, yellow, all done, right here and ok.  At school she said “happy” and her class was so excited for her. 

A picture from the first day of school:

School is going well for both girls.  Emma seems to be able to do well anytime and is enjoying fourth grade and likes her teacher.  Brianna is doing fine academically, but is having some difficulty with behaviors.  I’ve been doing lots of research and talking to lots of therapists, teachers, etc. to try to figure out how to help Brianna.  I think I finally had some breakthroughs this week!

I have felt that Brianna has some sensory issues for a while now, but I went to a conference on sensory issues and now believe even more strongly that Brianna has Sensory Processing Disorder.  Sensory issues explained to me in the way that made most sense describes turning the page in a book - you know you turned the page because you feel it, see it and hear the crinkle of the page so your brain puts those 3 pieces of information together and conclude the page has been turned.  Kids with sensory issues get each piece of information at separate times instead of simultaneously and then have trouble putting the pieces together to get the result of the page being turned. Kids with sensory issues don’t show medical symptoms, but instead show behaviors - Brianna seems to be a sensory seeker.  She craves movement and wants sensory input.  She also hates having her hair combed and is very picky about which shoes she will wear - and I’m not talking about typical kid dislike of hair combing and shoes - I mean she REALLY hates to have her hair combed and WILL NOT wear certain shoes.  We have been working with occupational therapists to help these sensory issues, but they seem to be getting worse for Brianna so we are stepping up the therapy.  Brianna also won’t get in her car seat.  I have huge anxiety about how long I will be in some parking lot trying to convince Brianna to get into her seat.  She is too strong so I cannot just put her in her seat.  One evening her OT helped me get her in her seat and was shocked at how hard she fights getting in.  So last week at therapy we took the car seat inside and practiced just getting in and out over and over.  Therapy ended with a successful buckling in the car.  They also videotaped it and we will play the video for her successfully getting in the car once a day at home to reinforce that positive behavior.  We have been doing therapeutic listening (modified music that should help organize her nervous system), spinning, brushing, heavy work, a compression vest, aromatherapy, have her eat crunchy apples - anything we can think of that will stimulate her senses to give her the input she craves.  We often get comments that we are not strict enough with Brianna or that we need to have better boundaries for her.  What these people don’t realize is that these strategies don’t work for a sensory kid like Brianna.  When she gets the sensory input she needs, she is better able to sit and do her work and behave how we’d like her to.  These comments hurt, but we do what we have to do for our daughter. 

My other breakthrough came when I read a post by another mom of a child that went through the same chemo treatment that Brianna had.  Brianna’s OT shared some resources with me on the same day.  Brianna had 18 spinal taps where they put methotrexate in her spinal column to kill the cancer cells hiding there - the other chemo does not cross the blood-brain barrier.  Her brain was bathed in poison for 2.5 years.  Though our hospital did not give us any ideas of what to expect post treatment, other hospitals classify our kids as having “brain injuries” and actually have OT programs to help these kids through academic difficulties.  Other kids without other disabilities also have difficult times at school - I am NOT making these issues up.  While Brianna’s issues seem to be manifested as sensory processing issues, she also seems to have memory issues.  Because she has learning delays anyway, we have had trouble characterizing them, but knowing other kids have memory issues too, some of Brianna’s difficulties make sense.  Some days she acts like what you ask of her is too easy and some days she gives the same answer for every question and acts as if she is having a hard time.  I think she probably doesn’t always remember.  Other hospitals do similar OT programs that we are doing with Brianna - so it gave me some reassurance that we are on the right track and are doing things that are good for Brianna.  While cancer treatment is done, life is far from “back to normal” at our house.  It is challenging and a lot of hard work, but the school has been great in implementing changes to help Brianna. 

Doug started a new job at the University of Iowa in the hospital IT department.  He is really excited to be working at a place so familiar to us.

Brianna gave us a little scare about diabetes this past month.  We went for normal monthly bloodwork and I mentioned to the doctor that she’s going to the bathroom several times during the night.  So they did some extra labs and checked her blood sugars.  Her results were too low.  The follow-up fasting blood sugars were normal so at this point she does not have diabetes.  If her blood sugars get too low during the day some of her grumpiness could be caused by that too. 

 The HADSA Buddy Walk was yesterday.  We had a lot of fun celebrating the people with Down syndrome in our lives.  It was a beautiful day and a successful event!  I’ll post pictures when we have them from other people.

As September- National Childhood Cancer Awareness Month - just ended, please remember the kids that are battling cancer.  More kids have to face this challenge every day.  46 kids are diagnosed daily and many more continue their battle.  Please also remember those families that have lost a child to cancer.  Too many kids have to face this monster.  We need more research.  We NEED a CURE. 

1. It was a busy but fun summer and now we are trying to get back into the routine of school.  I can’t believe how fast time has gone - but I think I say that every summer.  Emma had fun at all her camps - she had  a different activity every week and did some fun things.  Brianna enjoyed summer school and she loved ARC Summer Day Camp.  Brianna got to spend every day of the summer with Keri as her teacher - what’s not to love about that?  They did a program for parents at the end of the summer that was very cute!
2. A few health updates:  We are adding grains back to Brianna’s diet slowly.  She seems to be doing pretty well.  Her diet has been very time intensive so we are ready to get back to a gluten/dairy/soy free diet - which sounds difficult, but is much easier than the diet we’ve been doing this summer.  Brianna will always be on a gluten free diet. We believe soy was the cause of the eczema so we’ll keep that out.  We’ll try dairy again sometime, but are not in a rush to add that back either.  Overall, I do believe the diet has helped Brianna.  She has had one ear infection that was treated with drops and she got strep throat once and had antibiotics for that, but has otherwise been antibiotic and illness free since February when we started to change her diet.  Considering she was on antibiotics from October to February for different issues, this is a huge improvement. 
3. Brianna started REFUSING to wear her hearing aids near the end of summer school - screaming about it.  I took her to the doctor and he discovered that she had TWO tubes in her ear.  He kept looking and then brought in another doctor saying, “You’ve got to see THIS!”  This would only happen to Brianna.  The first tube is in her ear canal doing what it is supposed to be doing - which is good news because we thought it had fallen out in February - two months after it was put in.  The second tube was in her ear canal and was working its way out of her ear.  As it got closer to falling out, her hearing aid canal piece touched it in her ear and caused her pain.  It took two weeks to see the ENT to remove the extra tube and she would not wear her hearing aids.  (The ENT remembers that surgery and the anaesthesiologist was having trouble masking Brianna and told him to hurry up - that is how it happened.  The ENT didn’t get time to go back and do the clean/check at the end of the surgery.)  We had trouble getting her to wear them again.  Her stubbornness is astounding.  So we were nervous for school starting - and on the first day back, she wore her hearing aids like it was no big deal.   She still wouldn’t wear them at home, but since I knew they weren’t causing her any pain anymore, I finally convinced her to wear them again (after 1.25 hours) the second day of school.  Now she wears them every day with no problems.  We just needed LaRonda to get it done! 
4. Brianna’s behaviors are still off and on.  I took the girls to see a movie this summer and Brianna wouldn’t stay in her seat to watch the movie.  Then when we were leaving the theater, she decided she didn’t want to leave.  I didn’t want to spend the movie time with her going up and down the stairs, so I picked her up to take her out - and she grabbed the hand rail so I couldn’t get her out.  I pried her hand off of the rail and took her out to have a tantrum in the hallway.  I called Doug to pick her up at the theater and then went back to watch the end of the movie with Emma.  Not a good end to the trip - and it left me embarrassed and knowing why I don’t take her to movies more often.  She went to a couple of movies with her summer camp and did well - so I tried it again but took a second person with me this time.  Brianna did great this time - she needed a diaper change a couple of times, but sat in her seat and watched the movie the rest of the time.  So much improved from the beginning of the summer.
5. Cathing is going MUCH better than at the beginning of the summer.  She is having more wet diapers between caths and we don’t know what that means - she’s getting more control? she’s drinking too much?  She did well with cathing at her summer camp so hopefully it will go better for the school this year too.
6. We took a summer vacation to northern Minnesota this summer.  We went fishing and boating  and swimming in the lake and had a lot of fun.  We went to the headwaters of the Mississippi and enjoyed walking in the river.  Brianna had another HUGE tantrum at the park.  I had to carry her out of a building  and she was so mad at me for not letting her do what she wanted - she was flailing and grabbing my face and screaming and trying to get away.  Tables of people turned to stare at us.  I felt so judged and embarrassed.  Once she calmed down, she had a great time playing in the river.  I’ve been talking to her therapists about these tantrums and they feel that because she’s had so much medical stuff where she did not have control over what was happening to her, and because she has a communication issue because of her hearing loss, that these tantrums are kind of like the tantrums 2-year olds have - because they want control and don’t know how to ask for it.  So we need to work on preventing them and giving her control whereever we can.  Lots of people tell me how good it is that Brianna knows what she wants and isn’t afraid to demand it - and I do see the positive side of it - but as her parent, it is quite a challenge. 
7. School has started again - and Brianna once again has a great team.  They had a pre-school meeting that went very well.  LaRonda is back again which is great!  We love her teacher - Emma had this teacher when Brianna was diagnosed so she knows what Brianna has been through and knows our family.  Brianna knows her other teachers / staff from last year so I think it will be a good year.  She was hesitant to go into the school for the first three days - made me nervous, but it didn’t last long - she seems to be getting back into the routine.  There is less playtime in 1st grade compared to Kindergarten, but they make sure Brianna gets short breaks here and there and says she is doing well.  I’m excited for her to have a good year!  Emma gets back into the school routine with little effort - the hard part for her is prioritizing her time after school.  I’m not sure she’d admit it, but I think she is glad to be back in school too. 
8. I went to talk to Brianna’s class last week about Down syndrome and Brianna.  Kids are so honest.  I love it.  If only we could all just ask our questions when we have them.  And they accept the answers and go on.  It makes me nervous to do that talk, but I made it through. 
9. Hope you are all getting back into the school routine.  Until next time …

• The school year has ended and the girls both had a good year.  Emma is excited to now be a 4th grader and she is looking forward to a fun-filled summer.  She will be attending several camps this summer and is having a hard time deciding what she is looking forward to most.  Brianna will go to summer school and will have one of her preschool teachers as her teacher.  Fantastic that she will know the teacher!  She will also attend ARC Summer Day Camp and will get to see Keri as her classroom teacher every day!  It will be a good summer!
• Brianna had a fantastic year at school.  We are so thrilled with the people in her life at school.  We got a beginning of the year and end of the year picture of her and she has grown so much!  I ate lunch at school with her when she was the Star Student and Brianna passes her tray through the line like everyone else, but the lunch ladies don’t put any food on her tray.  They all said hello to her as she went through and she was thrilled to be like everyone else and put her home lunch on the school tray.  They were so sweet!  Mrs. Dirks is so motivational for Brianna.  Brianna can now write her name and is doing well.  We were so thrilled to have LaRonda to work with Brianna this year.  Brianna signs so much more now than she had been.  She is even into narrating what is happening which is a great chance for us to see her new signs.  Now if the dog could just read sign when she signs “Stay.”  Brianna came home from school on the last day with a picture of Mrs. Dirks and Brianna and LaRonda and Brianna. Brianna LOVES those pictures.  She played with them a lot that first day and told me who was in the pictures and carried them around with her. The pictures got kind of beat up, but we put them in frames in her room.  She looks at them and tells us who is in the pictures and then signs “school.”  Clearly, those pictures and those people are special to Brianna.    Brianna loves working with Mrs. Smitterbergh too and gets to copy and deliver papers at the end of the day - a fun way for her to help!  And Kelly (audiologist) and Sandy (itinerant teacher for the deaf and hard of hearing) worked with Brianna through preschool and will continue to work with her until she graduates.  We love having them on her team and Brianna looks forward to working with them too (except when Kelly helps us out by making an ear mold impression - Brianna doesn’t like that when anyone does it).  In speech, Cheryl is also seeing a more vocal side to Brianna.  Now we just need to teach her volume control!  There are so many people at school that are so sweet to Brianna.  We are thrilled to have her where she is.  We are looking forward to 1st grade too!
• Brianna’s diet is going very well.  We have seen huge improvements with Brianna.  Still difficult sleep, but it is more intermittent than consistent - an improvement in the right direction.  She still has tantrums but they don’t seem to be as frequent.  Her therapists have noticed that she has a better attention span.
• We got a new FM system for her hearing aids!  She has been wearing this every day at school and decided in March that her hearing aids at home were broken - and she signed once that we needed to add the “boots” like at school.  She is so used to wearing it at school that she noticed her hearing aids at home without it did not work as well.  Finally we got approval for the new at-home FM system in May (submitted the paperwork in January).   We are so excited to have it!  She didn’t want to put the aids on when we got it, but we held her aids by her ears and put the microphone next to the TV speaker with Curious George.  She started clapping and cheering and signing “fix” and now asks to have her “new hearing aids - fix” put on.  We are already noticing that she is more vocal at home!  Good things are happening for Brianna!
• Hope you have a good summer!

• Last week Make A Wish had their annual golf tournament fundraiser.  Doug participated with his office.  Aegon Transamerica Retirement Management (TRM) sponsored a hole on the course, provided an item for the auction, and a team for the golf tournament.  The team wore “A Wish for Brianna” shirts (and they got one for me too!).  The day before the tournament, Make a Wish called and said that they noticed that Doug was golfing and wondered if he’d speak about Brianna’s Wish because another family was unable to speak.  So, Doug got to spend a fun day golfing and then attend the dinner.  The keynote speaker for the event was Norm Parker, defensive coordinator for the Hawkeyes (who also had a son with Down syndrome).  Doug got to sit with Norm for the dinner.  Doug gave a short summary of Brianna’s health history and everyone said he did a nice job - I’m sure he did!  Doug had a fun day for a good cause!
• Brianna is still doing well.  We see improvements in so many areas, but we are still having some of the same issues. Sleep continues to be an issue and one of my biggest issues is getting her to sit in her car seat.  She will sit fine once I get her buckled, but it is some days quite a challenge to get her buckled.  So we just keep on day to day - thankful for the cooperative days.  All in all, we are still seeing an improvement over the few months right after chemo. 
• Brianna’s counts for the week:  Hbg 15.0, WBC 7860, ANC 4794 and Platelets 187,000 - all normal!  We saw Dr. O’Brien this week and everything is fine.  We also saw her ENT and he was disappointed that one of her tubes came out after only 2 months.  He said he’d put tubes back if she started to have problems again.  Hopefully that isn’t an issue. 

• We continue to see things improve for Brianna.  Last weekend she got her hair cut and she sat in the chair by herself for most of the cut.  We have been going every 2.5 weeks to get her used to going there and it is working.  The stylist was even able to cut the one long section at the back of Brianna’s neck that Brianna hasn’t allowed to be cut up to this point!
• We went to a newer church for us this past weekend and Brianna went readily with a junior high student to Sunday school - and it sounds like she enjoyed it.  Then we all went to church and she made it through the entire service.  She played quietly and was able to stay the entire time!  Usually we end up taking her out during the sermon.  Of course, Brianna asked that same junior high student to sit by her in church (and that sweet student did sit with her) - Brianna has made a friend for life!
• Then this afternoon Brianna had speech and her therapist commented on how Brianna has changed in that she is able to sit and concentrate on one task to completion.  She also commented that Brianna’s babbling has more sounds and sounds more like speech than it did when she started.  Fantastic that even her therapists are noticing changes.  Her OT has had the same comments.  Her teachers are also seeing that she is able to sit longer and work on one thing for a longer time.  She isn’t craving constant movement like she had been during treatment.
• All of these are great things!  We are thrilled to be seeing improvements and hope to keep going in the same direction.  Brianna still isn’t sleeping through the night and she is grinding her teeth a lot right now - probably something going on that we haven’t figured out yet.  But one day at a  time.

Some big exciting news - Brianna did not need to be held for the first time EVER at school for cathing this week!  This is HUGE!  It has been taking 3 people to accomplish this prior to now.  So at least things are getting better.  She isn’t consistent yet, but moving in the right direction.

A funny story - Brianna LOVES the almond flour brownies.  And once she starts eating them, she doesn’t want to stop.  After she’s had her serving of brownies, I put the rest of the pan on top of the refrigerator so she couldn’t help herself to more.  Later I heard Doug downstairs asking what had happened.  The rug was moved away from the cabinet, a chair was next to the counter that is next to the refrigerator.  And Brianna was eating a brownie.  She had climbed onto the chair, then the countertop to reach her brownies on the refrigerator.  It was a time when Doug and I went, “Wow!”  Wow - because that is so scary that Brianna got the brownies.  Wow - because we were proud of her for her motor planning to be able to figure out how to get what she wanted.  We won’t be storing the brownies on top of the refrigerator anymore!

We saw Brianna’s local doctor today and I talked to her about the diet we are trying.  She completely didn’t think I was a crazy mom.  She said it didn’t seem like a far-out diet but a healthy diet so she had no problem at all with trying it.  I told her we were seeing improvements in Brianna so she said she couldn’t argue with that.  She was willing to listen and she was fine with what we are doing.  So I’m excited to not be going to Iowa City every month.  Her local doctor can track all of Brianna’s “other” health conditions at the same time as following up for chemo.