• 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.

• Well, we are almost three weeks into the diet and are seeing some positive improvements.  Over Easter Doug and I both realized that Brianna was just happier.  She had her full body giggle back and was giggling at everything.  And she isn’t dropping to the floor in a tantrum as quickly or as often as she had been.  Now if we can continue to see improvements.  She still isn’t sleeping well, her rash comes and goes, and she still says no to everything, so we still have some work to do.  She is having LOTS of poopy diapers - and I asked the doctor who is helping us with this diet about it and she said that is expected and a good thing.  To heal the digestive system, Brianna will “shed” all the bad bacteria and replace them with healthy bacteria.  She also now has a rash on her bottom - another side effect of the diet as her body works to get rid of the toxins in her system.  So I think good things are happening and the diet is working so hopefully we can continue to see that Brianna is getting better.  
• Cooking for Brianna’s new diet is a challenge, but we are having more successes than failures.  She is getting more willing to try new things - Emma is too.  My new favorite gluten free cookbook is The Gluten Free Almond Flour cookbook by Elana Amsterdam.  Cooking with almond flour is so tasty - and healthy too - packed with protein.  We substitute honey for the agave and coconut oil for the grapeseed oil in the recipes and most recipes meet Brianna’s diet.  Brianna loves almond flour monster cookies and coconut ice cream - YUM!  Eating vegetables alone is still a challenge, but we can hide vegetables anywhere.  Fruit smoothies are a staple for Brianna.  It takes extra baking time to always have snacks for Brianna, but is worth it if we continue to see positive improvements.  
• Life still seems to be crazy busy - guess that is just the way it is.  Doug and I still think if Brianna could sleep, lots of things would improve - and we would feel better with a good night’s sleep too.  Until then … we take one day at a time.

• Brianna had her monthly appointment at the University of Iowa this month.  It was a difficult visit and it made me glad we can see our local doctor for the next two months.  Dr. Staber came in and asked me how Brianna has been doing and I told her I was disappointed with how long it is taking her to come off of the medicines.  Other kids are back to “normal” within three months and Brianna still isn’t sleeping through the night and now has additional food intolerances.  Her first comment, even before I was done explaining what was going on, was that it was too far out now that these effects are NOT from the chemo.  WRONG thing to say to me today!  She was very defensive about it and I took the opportunity and get up on my soap box.  I told her I was frustrated that every symptom I mention is often met with a “that isn’t from the chemo” response.  I had talked with other families and many kids had gotten the rash coming off of treatment - the difference is that Brianna’s didn’t go away until we changed her diet and it did go away for the other kids.  I told her that a dermatologist had told us that part of Brianna’s rash WAS from steroid withdrawal so I thought they needed to step up and tell parents it was possible.  I told her I was tired of hearing that it “wasn’t caused by chemo” and that it wasn’t a “typical” reaction.  I told her that I was frustrated that Brianna has other underlying health issues and I didn’t feel they were considered through her treatment.  I told her I was frustrated because Brianna has Down syndrome and they had forgotten that she has Down syndrome and were only treating the cancer - I also said I understand that the cancer trumps the other issues, but now that she is done, I told her that I thought they needed to provide support so we can get Brianna back into good health.  Just recently a friend that had breast cancer told me she didn’t feel back to “normal” until about a year after treatment - so why would Brianna be back to “normal” within 3 months????  I told her I was frustrated that they keep sending Brianna to different specialists and then the doctors never talk to each other.  I told her I found studies that say MANY cancer patients have insomnia and it can become a chronic condition, especially for younger patients.  She said that study was done for adults so she wasn’t going to read it.  I know other parents that are concerned about how their kids are doing academically post-treatment - and we have been told that there could be long-lasting effects of the chemo.  Why could shooting poison into my daugter’s spine affect her academically, but NOT affect her sleep????  It made me SO angry today that she could tell me that Brianna’s insomnia wasn’t caused by chemo - and for that matter, that her food intolerances also were not caused by chemo.  Perhaps Brianna has had a soy intolerance for longer than the last 4 months, but Brianna was taking steroids which would have suppressed any reaction that we might have seen.  The chemo was probably eating away at her gut, making the intolerances worse - and then throw on some antibiotics and of course, Brianna develops food intolerances.  She explained to me that because we are 4 months out from treatment, these effects would “typically” not be caused by chemo so she thought the issues were from other underlying health issues - I have been reminding them for the past 2.5 years that Brianna has other health issues.  I am well aware of that and now I feel that some of her chemo has made them worse.  They just minimized everything I told them I was concerned about.  And then she told me she wanted us to come to her every month so she would be “in the loop” and know that Brianna was having these issues and that I could call or email anytime to ask her questions about these issues.  Well, it was crystal clear today that they know cancer and that is all - they don’t know the after effects of treatment and they don’t know any other system so I will do best just to tell them Brianna is “fine” and leave it at that.  I told her I would not come monthly to Iowa City - the other thing they don’t know about having a kid with a disability is that Brianna has speech Monday after school, SCL Tuesday after school, OT Wednesday after school, she sees the chiro or local doctor Thursday after school and she has music therapy and riding lessons Friday after school.  School right now is a great place for Brianna so I try to minimize her time out of school as much as possible.  Brianna is a busy girl - she doesn’t have time in her schedule to go to Iowa City once a month now that it is not required.  And we love her local doctor - she will listen to the other health issues for Brianna’s overall health picture. So we’ll dutifully go to our follow-up appointments in Iowa City as required, but they will be short visits because we’ll figure out Brianna’s health issues with a different doctor.  On one last note - I am VERY thankful that they were able to treat Brianna’s cancer.  I am just frustrated that Brianna continues to have issues.