41 Days + 18 Days More

The wonderful news is Alanna's fevers ceased three days ago.  She is more her energetic, silly, active self! (This does not mean she is miraculously healed from her mobility difficulties but that she is fun, silly, and clumsily trying to dash around).  She still has spurts of fatigue that I believe is from the antibiotics she is taking.  We have been living at the hospital for 41 days now.

The antibiotics are the kinda sour news.  Because the doctors never figured out what was causing her fevers they started adding antibiotics one after the other until the fevers finally went away. 
1) Vancomycin: a stronger antibiotic for the Abiotrophia Meningitis infection that she acquired from brain surgery a month ago. Given continuously by IV.  Which is why Sandy the IV pole goes everywhere with us.  It took the doctors a week and a half to get the dosage to a therapeutic level.  Apparently Alanna needs a lot of this one.
2) Gentamicin:  An antibiotic that works with Vancomycin to make it stronger.  It pokes holes in the bacteria infection so the Vancomycin can work more effectively.  Given every 8 hours.  The doctors are still playing with the dosage of this to get it exactly right.
3) Flagyl:  Is an antibiotic given to patients with abscesses that result from their surgery.  All MRI's, blood work, and everything show that Alanna does not have an abscess.  But her fevers were still continuing even after #1 and #2 were given and the doctors were mystified.  So they added this antibiotic just to see if it would work.  I think she gets it 3-4 times a day. 
4) Ceteprine:  I can't even remember why they added this one.  But, why not try everything? 2-3 times a day?  Whatever, I've lost track.

About 24 hours after #3 was given the fevers ceased.  #4 had been given less than 12 hours.  The doctors did all kinds of tests. They even put her in isolation for 24 hrs while they waited to find out if she had a respiratory virus, she had not symptoms other than her fever!  But whatever, might as well test every little thing.  (Which putting Alanna in isolation was complete horror, we were so bored.  Alanna was so angry she couldn't go to the playroom, and everyone who entered our room had to put on a yellow gown and yellow mask.  But when all the respiratory virus tests came back negative we all cheered and the hospital staff celebrated with us by tossing their minion costumes.) 

So sourly, since Alanna is on so many antibiotics and the doctors have absolutely no idea which antibiotics are necessary and which ones are not her hospital stay has been extended again.  They have to keep her till she is off of antibiotics because it will be too much to do at home. (And I've lost track anyways so I would definitely not be responsible enough.)  So we will be here at least 18 more days.  (Must be 21 days after her last fever.)  They can't start guessing at which antibiotics to stop because the fevers absolutely can not come back.  She must start radiation as soon as possible.  (Which looks like it will be this Tuesday.)  She can be on the antibiotics while she does radiation therapy but can not be spiking fevers.

Also, we finally got the information that Alanna's tumor subgroup is a WNT tumor.  This is extremely good news.  These medulloblastoma tumors are the ones that are the most curable.  They respond best to treatment compared to all of the other subgroups.  They also, are slow growing tumors that usually start growing in embryos.  It does not surprise me that Alanna probably has always had this tumor growing in her brain.  She is extremely smart but gets frustrated very easily.  Understanding now that her brain could not always get the message to her body of what she wanted it to do explains so much of her reactions to difficult things.  I am excited to watch her progress now that the tumor is gone.  WNT tumors are usually genetic but they are not necessarily hereditary.  We decided on the standard treatment given to WNT tumor patients since it is so effective. Which is a standard radiation dosage of 24300 for 6 weeks, 5 days a week with once a week chemotherapy.  Afterwards will be chemotherapy which we will know in better detail when the time comes.

Keep Goleta warm for us!  We are still hoping for a weekend home.  Maybe memorial weekend?  Let's keep our fingers crossed! Better yet, let's all pray for it!  Much better chance of getting it ;)

 Alanna decided she was making sock puppets and taught all of the volunteers in the playroom how to make them.  It was so delightful and so fun.  We laughed and laughed and laughed.  Since we used all of the socks Alanna is hoping they get more socks soon so she can make more puppets!

Continuous Fevers

Alanna has had a week of sporadic fevers now.  The doctors keep playing with the dosage and types of antibiotics they are giving her for the infection in her nervous system.  She had an MRI of her brain and spine last Tuesday (her brain shows no sign of abscesses or tumor growth still, Her brain does have signs of inflammation that has developed from the infection.)  When I tell you she has a fever in no way do I mean she is any pain.  She has a fever and it makes her a little bit tired, she is still smiling, joking, and in good spirits.  The fevers come and go.  We have been told she would need to make it 48 hours without a fever before we have any hope of leaving the hospital.  She hasn't even made it 12 hours yet.

She had an ultrasound done of her heart twice now because the first time she moved and fought too much.  The second time I told her an hour long make believe story to keep her calm.  Don't ask me how I managed!  It was out of desperation!  It was a crazy story about a puppy named Sandy who wore hot pink shoes with rainbow laces and a yellow hair bow.  Sandy won the dog show. The prize was 636 flowers, 200 and something dog biscuits, and 36 puppies.  She had to take the puppies home somehow and then they all had to have a dance party on a rainbow.  They all slid down the rainbow. 1 puppy, 2 puppy, 3 puppy, 4 puppy. . .   Around 15 puppies down the rainbow they finally finished the ultrasound.  I am so glad I didn't have to name them all!  Anyways, the ultrasound of her heart turned out well and they are happy that she has a healthy functioning heart with no infection.

Sadly, they didn't get the ultrasound of her stomach that they wanted.  But thankfully they have scheduled another lumbar puncture to check on the infection in her spinal fluid again for Monday morning.  So while she is sedated for the LP they will also do the ultrasound of her stomach so that I will hopefully never need to make up the names to 36 puppies.

She also did her radiation simulation this week so that whenever the fevers go away radiation will be ready for her to start her treatments.  She must lay in the radiation machine that exact same way every time she goes in.  She wears a mask as well to keep her head still.  Her body must be protected so only her brain and spine receive radiation, hence all the care. She has stickers with X's all over her chest that we must leave on so they can line up her body each time.  I guess X marks the spot.

In between the fevers Alanna has taken to walking all the way down the hall in her new hatchimal slippers so she can watch the eyes glow.  I now understand the need for shoes with lights in them.  It is so nice to have a motivation for her to walk so far!

Also, Steve moved out of the cottage to St. James Inn.  The inn is 2 miles away from the hospital has a shared living space and kitchen with two other families.  We have a large bedroom with two twin beds and a very nice backyard.  Members of the other two families are also battling types of cancer and the inn is donated just like the Ronald McDonald House.  It looks to be an even better match for our family than the cottage is.  We are so grateful!  Alex's Lemonade Stand donated a gasoline card to our family and the Bumblebee Foundation donated funds for gas and groceries.  We are so thankful and are able now to focus on getting our daughter well rather than how much debt we are getting ourselves into.  Thank you so much!

A great thank you to all of our friends and supporters as well.  We are amazed at all of contributions you have sent us.  Much love to all of you, we still appreciate and feel your prayers everyday.

I have been able to run a few miles this week.  Mostly when Alanna is in procedures.  Steve was able to finish writing his dissertation and send it in for review.  We feel like we have lost our life and have been thrown into a completely different reality.  We have now been in the hospital for 36 days (minus 6 hours last week) and I don't see any chance of getting out anytime soon.  The doctors are even starting to call the hospital our home and I have agreed with them!  The hospital really does feel like home now.  I can't tell you how strange home felt last week when we were there for 3 hours.  I have the hospital playroom's schedule memorized and we go there every time it is open.  I never set foot into the cottage Steve stayed in the last couple of weeks but I know he enjoyed it (Thank you Megan's Wings Foundation!).  I hope I get to see St. James Inn at some point.

And a new hat for me, children's author and illustrator.  "The Adventures of Hatchy Puppy and the Hatchy Slippers".  I have now written 5 books in two days.  Book ideas for volume 6 are appreciated :).

Alanna has decorated her pole and named it Sandy since Sandy now goes everywhere with us.  We have taken Sandy to the playroom, midnight walks through the hall, the bathroom, and the shower.  Sandy likes to beep a lot and every time she beeps we call the nurse to shush her up.

I guess, we are hanging in there.  Trying to still hold onto a little of who we once were and making the best out of a traumatic situation.  My prayers to each of you that you may go on doing good in the world in your own trials.  God gives us trials so we may learn and become stronger better people.  All my love and one small request to you to keep a prayer in your heart for Alanna.

Not This Weekend

We have a dream: that we will be discharged, go home, and surprise everyone when we show up to church, school or just something normal with our daughter.

Yesterday on Saturday we were discharged from the hospital finally after four long weeks at the hospital.  We were so excited.  It took 2-3 hours of packing all of the fun things that our dear friends sent us.  It took two luggage carts to take it all to the car.  We were in smiles.  Finally a few days at home before we would have an appointment to set up radiation treatments.

We drove the 2.5 hours home.  We told so few people, wanting just to absorb being home a bit before letting others know.  It was beautifully decorated.  Alanna loved her room that the young women at our church decorated for her.  She loved the hearts on the door from the sister missionaries.  She loved seeing her pet fish and feeding them.  She loved that the sunflower in her garden plot was just starting to open.  She made me hide her Easter Eggs so she could find them.  She talked a long time about how she was going to go to Kindergarten on Monday in her new wheelchair to see her teacher and classmates.

I imagined sneaking into church for twenty minutes or so of sacrament meeting just to see people wave and smile at Alanna.  Alanna asked me to run to Costco to buy her some crunchy snap peas to eat.  Which I happily obliged but I was shocked to see normal people doing normal things.  I hadn't done anything normal in weeks.  Oh how I look forward to feeling normal again someday!

When I arrived home I remembered to cut off all of our hospital bands.  Boy did we cheer!  Hallelujah!    A dear friend came and dropped off dinner!  Oh, a home cooked meal.  Thank you Alison!  I set the table, we dished out the food and I went to get our little girl to bring her to the table.  When I picked her up she was HOT with fever.  102.5 degrees.  In panic mode we grabbed what we could and went to the car.  Alison, your dinner made it with us.  We ate it gratefully in the ER while we waited for instruction.

Sadly and depressingly our instructions were for Alanna to ride an ambulance back to UCLA.  The ambulance wouldn't take a parent.  They came from a privately owned company and refused passengers.  Steve and I sadly followed the ambulance all the way to LA.  I was driving and very very tired.  I had to roll the window down and sing Disney songs with Steve to stay awake.  It was a long depressing drive.

Our dream of returning to normal was not for Today.  But I still hope for that day.

Alanna slept through the ambulance ride peacefully and was greeted by a nurse she recognized and felt safe with when she arrived at 1 am.  Today Alanna's fevers keep spiking.  Their only idea is that her infection hasn't completely gone away even though her blood work looks good.  They have switched her to a different antibiotic and are closely monitoring her.  This will most likely delay her radiation treatments until they can get this infection under control.

We were welcomed back by hospital staff in a love/hate kind of way.  Alanna had a nurse she really likes today and was calm.  Her fevers aren't really bothering her much except for making her tired.  She also got a "Little Wishes" gift from the hospital.  The hospital gives gifts to children who have been in the hospital for 14 days.  Her's arrived just as we were leaving and gladly I had it for her to open today.

Please pray for Alanna, my heart breaks for her.  She is so strong and brave.  But this isn't fair.  We were home for a total of 3 hours.  Please pray that our dream of bringing Alanna home will happen someday.

Things To Come

Late Wednesday night Alanna got her central line placed.  She is looking forward to not being poked any more.  We are thankful they were able to get her in last thing in the day.  Since it was so late into the night they decided to do her lumbar puncture the following morning.  Putting her under anesthesia twice in less than 12 hours.  She did a great job.  but was rather sleepy yesterday and hungry.

So far the infection she had is no more and she is recovering well from both procedures.

Okay, so treatment plan is:
She will have 6 weeks of Radiation Therapy.  5 days a week.  She will be outpatient during this time but the therapy must be done at UCLA which means we will not be able to go home during this time.  However; I do imagine we could make it home for some weekends.  Radiation will be given on her brain and on her spine for approximately 3 weeks.  The last 3 weeks it will be focused on the back of her brain where her tumor was in the focal area.  Treatments will be short, about 15 minutes each but during this time she will not be able to move which is why she will be sedated.  If you know Alanna, you understand her inability to sit still for anything!  She will lose all of her beautiful hair but it will grow back eventually. 

After radiation therapy she will endure 9 cycles of chemotherapy.  A cycle of chemotherapy is 4-5 days of chemo drugs followed by 4-6 weeks of rest.  Some cycles will be inpatient and some will be outpatient. 

With the need for chemo patients to be isolated because their immune systems are so weak she will be home schooled throughout all of 1st grade.  Hopefully by 2nd grade she will be able to return to public school which she loves so much.

The doctors believe that Alanna will do well and that she will be able to be cured.  It just takes time and lots of treatments. 

None of her treatments can be done in Santa Barbara.  There really isn't a whole lot for pediatric cancer cases at cottage hospital unfortunately.  I have been pretty sure that since they flew us by helicopter to LA that this is the best place for Alanna.  Steve will continue his job search where there are good pediatric cancer hospitals and we hope that we will find something good. 

The social worker we have been working with at the hospital found us a cute little guesthouse at a family's property who had lost someone to cancer.  The family wants to give back and have opened up their home to us while Alanna does her radiation therapy.  The home is about 45 minutes away from the hospital.  This is an amazing blessing and we are so grateful. 

As soon as Alanna finishes her antibiotics for the infection she got last week and she has no more fevers the hospital will discharge us.  Next week she will be fitted for the mask she will have to wear for radiation therapy.  Radiation should start the week after that. 

Thank you for the notes, gifts, donations.  I hope to be able to reciprocate to each one of you someday.  I hope none of you have to go through something like this but I do want to hug each and every one of you.  I have never felt alone through this entire experience.  The nurses, doctors, and hospital staff tell us that Alanna's room is the most decorated they have seen!

Small Steps Forward

On Monday 4/2/18 Alanna had her lumbar puncture which so far has shown that she has a lower risk cancer.  We are tickled that it isn't high risk and she won't have to spend an extremely lengthy time in the hospital.  She will be doing radiation treatments, hopefully starting within the next week.  After that she will have chemotherapy.  We have not been given a treatment plan.  The cancer doctor, Dr. Davidson, is waiting for all of the results from the lumbar puncture to be complete.  She is waiting for one more molecular test.  She also has not decided on what kind of line Alanna will get.  (Either a central line or a picc line).  The treatment plan will determine which line is best for her.

Also, last Monday Alanna picked up a bacterial infection called abiotrophia.  The doctors were shocked to find this bacteria in Alanna's spinal fluid.  They have never seen it in brain patients, it usually shows up in heart patients.  Abiotrophia is normally spread by mouth.  They have no idea how the infection got to her brain.  However, it is an easy infection to treat and responds well to antibiotics.  It should be cleared out in 7 days, so on this Monday.  It was a scary 24 hours waiting to find out what kind of infection she had, hoping it was not meningitis. If it had been meningitis she would not be able to start treatments until it was cleared 21 days later.

Alanna has scheduled to get whichever line the doctor decides to use this Monday.  At the same time, so they only put her to sleep once, she will have another lumbar puncture to be sure the infection is completely gone.  We are also hoping to get her treatment plan on that day. Update, due to a slight fever Sunday night and the Doctor not yet getting her molecular test back to determine which type of line the procedure has been postponed till Weds, April 11.

While the infection has cleared we have started to see our playful silly girl again.  And are enjoying watching her play and giggle. She has made improvements in walking.  We are all feeling a bit homesick but still know we are in the best possible place for Alanna right now.

God is still blessing us every day and we are still feeling the effects of everyone's prayers and well wishes.  We are looking forward to finding out what will happen next.