Since we have been home even though we are facing down the scariest thing we have ever encountered medically we are somehow finding a calm within the storm.   We still are at the hospital at this point for clinical checkups or for chemo therapy but we can go home at the end of the day and be in our own home and sleep in our own beds.   You never really let it out of your head what you are going through but somehow the new normal begins to set in and things aren’t as raw.  I have found myself going to far into this desensitization and losing my tact when someone ask me how I have been or what I have been up to.   I ran into a customer that has become a friend randomly at the airport while I was leaving for my first trip since all of this has happened.  He asked me how have you been and I just dumped my rather jarring story on him.  As his mouth hung open in shock I realized I could have presented that better or even just answered fine to the question like everybody else does that is carrying around their stuff.   Then I awkwardly found a way out of the conversation and said good bye.  I later texted him and apologized for tactless blabbering and he was very nice to say no worries.

The first weekend home we started to really notice Audrey losing her hair quite a bit as we were brushing it and it was just getting tangled a lot more than normal as you could see the hair was dying.   When you would brush her hair there would just be a pile of hair in your lap.  While I was repairing the roof from the dust storm that had ripped off a 10 x 20 foot section of our roof while at the hospital Melissa came out to let me know she was going to trim Audrey’s hair out on the porch if I wanted to come hang out.   She ended up doing a great job and her hair was actually very cute that way even though it had thinned a bunch on the back and top she still had enough it looked really cute.   Cole had decided at this point he wanted to save Audrey’s hair from the brush as well as what we cut off.  He had been saving it in a creepy pile on his book shelf so Melissa said he could keep it but he had to put it in a bag and store it somewhere she couldn’t see it.  I ask him why he needed it and he said because he might want to look at it when she is bald.

The week before while in the hospital we had finished our first 3 weeks of chemo and we were starting week 4 of treatment.  This is a week I have been dreading and at the same time looking forward to.   Week 4 we get an MRI so we can see what has been going on inside and what the state of the tumors is.   Knowing that the oncologist also has no idea what type of results we will see as well since there are only a few cases to go off.  Unfortunately this is also my first week back to traveling and I will not be home for the MRI or for the follow up appointments that will follow.    This trip is from Phoenix to Minneapolis for a meeting then connecting through Dallas on my way to Raleigh, NC for a meeting.   During my plane ride from Minneapolis to Dallas Melissa has the appointment with the oncologist.  As soon as I land in Dallas I give Melissa a call and she has good news. Up to this point there has been very little good news.  It seems like every turn has been darker and scarier that the next.  She tells me the tumors have receded some and that the oncologist is happy with the scan.  At this point that is about all we know.  We are the cautiously optimistic that things are moving in the right direction.  The next day Audrey went to see the neurosurgeon who really love her.   He was so excited to see the scans.  He said the syrinx has completely diminished and the tumor that he saw inside of the spinal cord was no longer visible.  His face was lit up and for once he got to give us good news.

After 16 days in the hospital split between the PICU and the Oncology floor we finally made it home and are starting to get settled in.   We sleep our first night in our own bed and things seem to be going well.  Audrey is still having issues with peeing and pooping but they sent us home with medicines to work on that.

As anyone that has ever gone through surgery and on top of that chemo the hardest part is management of regularity.   Audrey has been struggling with not going but a little bit for the last 2 weeks as her system is still getting moving after being on the paralytic medications and pain killers.  Finally on Thursday she broke loose and oh man did she break lose.  The rest of that day and the next she caught up and was feeling and looking much better.

On Friday the 3rd Cole and I went and made our traditional purchases for the 4th of July so that we could blow some stuff up.   Kind of felt like things were getting back to normal.

The next morning Audrey slept in very late and when she did get up she was super lethargic.   She napped all morning and just laid around the couch.  This was very out of ordinary for her.  At about noon I told Melissa I was starting to get concerned so she suggested we take her temperature.  It was 102.5.   One of the many instructions we were given when going home is if her temperature is over 100.4 we were to call the doctor and head straight to the ER.   This was no way to start the 4th of July if we wanted some normalcy.   We got to the ER and they accessed her port and pulled blood.  They sent that to testing and started her on some fluids and antibiotics immediately.  The blood came back and her white blood cells were super low and her hemoglobin’s were getting dangerously close to need a transfusion.  These 2 things meant we were getting transferred from the ER back to the 7th floor to oncology.   Not exactly the plans we had for the 4th.  We sent Cole over to a friends for the evening where he could have fun and enjoy the night and Melissa and I set in for another staycation at the hospital.  We watched the Fireworks from all over Phoenix and the surrounding areas from our window in the room.  I saw at least 5 different displays as well as some seriously cool fireworks coming from houses in the area.  It wasn’t what we expected to be doing but was still nice to see.

The next few days we would be battling the fever.  The rule is we had to stay fever free for 24 hours before we could go.  The first couple of days it would come down after theTylenol does but as soon as that wore off it jumped back up.  After about the 3rd day we started seeing it stay down for most of the day.  Finally the fever broke about in the evening on Monday and stayed away.   At this point we would have to come back for chemo if we went home Tuesday night so we just stayed until we got done with chemo on Wednesday.   It turned out on Wednesday they were having a jam session and since we knew it would be later in the day before we got to go home we had Melissa’s mom bring Cole up so he could play to.   They had a full setup of instruments for them to play and it was so fun watching them.

We finally got the chemo.  Blood counts came back good and we got the notice paperwork was being processed and we would be going home again.  This time the packing was much easier and we had learned from the last time.

So we have our first night of hospital life where we try and sleep and the nurses come into check on Audrey every 2 hours.  The first day out of surgery is just about resting and healing.  The next day we get the results back from the biopsy.  We are hit with another bomb shell.   We find out Audrey has Rhabdomyosarcoma.   We also find out this is a very unusual place for it to show up which means we need more testing and an MRI to find out if it has spread.   The doctors order a MRI full brain and spine with contrast to see if the tumor on the spine is the origin tumor and if it has spread.   They also order a full upper body CT scan, a bone scan and a bone marrow test.

The MRI result come back and we are hit with the third bomb shell.  The tumor is not only in an unusual location for its type but it turns out when it forced its way into the nervous system it metastasized into the spine and brain.   We also find out that there is still a pea sized part of the tumor left inside of the base of her spinal cord.  We meet our Oncologist for the first time and he informs us there have been only 4 other recorded cases in the world of Rhabdomyosarcomathat has started in the back and spread into the spine and brain. With basically no prior cases to go off it’s time for the doctors to come up with a plan.  Our new doctor contacts MD Anderson and sends an email out to 1500 other Oncologist to help get some ideas on where to start.  After 5 days of scanning, poking and testing the CT, bone scan and bone marrow all come back clean and we can finally take Audrey off the ventilator.

After seeing the pea sized tumor still in the spinal cord the initial plan was to go back in and remove what was left but it turned out the recommendations from MD Anderson that Banner is affiliated with came back to immediately start a very aggressive 54 week chemotherapy and radiation treatment plan that will put Audrey’s body and will to the test.   We were also explained there are only two ways to have a complete cure to this cancer.  That is chemotherapy to shrink the tumors then either surgery or radiation to eradicate the cells.  The cancer in the upper back and brain are inoperable so radiation is the only way to kill it.   With cancer nothing comes without very large side effects.  2 major problems with where her cancer is.  The problem with irradiating a child’s spine is it will stunt the growth of the spinal area.  We are not fully sure what this means visibly long term.  The second side effect is when irradiating a young child’s brain it will leave damage.  In the case of a child Audrey’s age it will mean 10 to 20 points of IQ loss.   We have dealt with our daughter has a tumor on her spine.  We have dealt with our daughter has cancer and now we have to deal with what the long term effects look like if she lives.  Both of us talk later and find out we both decided we didn’t want to do this anymore and we were done.   But it’s not that easy when you are a parent.  You don’t have the option to be done.

Monday June 22nd we got moved upstairs to Oncology.  We had a meeting with our doctor where we learned about all the different types of chemotherapy that Audrey would receive and again with the side effects.   4 of the 8 chemo treatments could give her cancer.   We also learned that MD Anderson in Houston has a different way of administering radiation.  They have a Proton Beam Therapy device that has a more precise delivery of radiation that and has shown in many cases to have a much less brain damage when used.   Which means less IQ points lost.  Unfortunately it doesn’t change the spinal growth issues but does mean less radiation going to vital organs during the treatment.  This also means however that at some point in the treatment we will be spending 6 weeks in Houston.  We will cross that bridge when we get to it.

A lot has gone on since we arrived at the hospital from the surgery to the subsequent testing.  The entire time we have been in a constant form of free fall not knowing which way is up with continuous kicks to the gut around every corner.  Finally getting to the Oncology floor and starting a treatment plan as scary as that is seems a bit comforting as at least we know what the days to come look like for the most part.

Now that we are upstairs Audrey’s body still needs a few days of healing from the surgery and waiting for her antibiotics that she needs for one of the chemotherapy’s to kick in before we can start.  So it’s decided on Wednesday the 24th she will get treatment zero.  This is the first treatment that starts the clock and sets the pace for the next 54 to 80 weeks of treatment.  This is all depending on how her body handles the treatments and how effective the set plan is.   As said before this is a super rare case of Rhabdomyosarcoma so it’s not sure exactly how effective if at all it will be.  Time will tell.

While we are waiting for Audrey to heal the physical therapy nurse comes in and decides it’s time to get Audrey out of bed and see how much use of her legs she has post-surgery.  Remember when the doctor came out of surgery he told us he had no idea how much loss in function she would have.  We have seen her move her legs around a bit but she has been very sedated up to this point.  The physical therapist brought in a walker and said let’s see what she can do.  As Melissa has said (Mom) no one told her she might not be able

to walk.  She stepped up to that walker and started moving it slowly.  The physical therapist decided to make it a challenge with a reward.  She setup the toy cart down the hall and told Audrey if she could walk to it she could pick out a toy.   It took a lot of effort for her but once she got started you could see it was all working it’s self out.  I (Dad) couldn’t believe my eyes.  For some reason this has been one of my biggest fears and I knew if she could conquer this she could beat anything.  She made it to the toy cart and back that day.  The next day she didn’t need the walker and just started walking around like nothing ever happened.  Simply put it was miraculous.  We have had nothing but bad news for almost 2 weeks and the feeling and memory of seeing her walk will never leave me.

Audrey’s neurosurgeon came for a visit to check on her now that she has come off of all the meds and do an evaluation of function.  At this point he doesn’t yet know she has been up walking.  He is standing at the end of the bed and I ask him if he wants to see Audrey’s surprise for him today.  I pick her up and put her on the floor and say go see the doctor.  So she walks over and says hello.   The look on his face was priceless and you could see the joy in his heart.  Audrey has a way of inserting herself into the heart of people she meets and not letting go.  The doctor is no different and I think Audrey has become as close as family with her doctor at this point.

Well now that we are walking and riding around the tricycle that Audrey is now calling her motorcycle it’s time to get that chemo started.  The first three weeks are setup to be a full week of Irinotecan which is 1 hour of pre-hydration then 1.5 hours of the chemo and 2 hours of post-hydration every day for 5 days of the first treatment week.  At the same time we will be Vincristine given once a week for 3 weeks and is only about 15 minutes long.

The first week of treatment goes well.  The antibiotic they started 2 days before treatment has helped to keep her from getting diarrhea from the Irinotecan and the anti nausea medicine they administer before every treatment has helped her not get as sick.  She has to take many oral medicines still to help with bowel and bladder control.  This is becoming a bigger and bigger battle each day.  She has been on steroids for inflammation of the back surgery and the roid rage is becoming intense.  Every feeling is exaggerated and the displeasure of one of her med’s is not going well.  After spitting it out and blasting it all over the room 3 unsuccessful times in a row we were able to switch to a pill on that one and put it in apple sauce.  This greatly eased the morning and night med time.

Now that chemo has been started things are going well we just need to wait for our second treatment on Wednesday 7/1 of Vincristine and we will be evaluated to go home.

First week of chemo is over and we get our quick treatment of Vincristine then they will check us out.  Well that is what they told us at the beginning of the day.   It’s not always as easy as it seems or should be to get approved to leave the hospital.

Everything is tracking that we will get to go home today 7/1 and  after sleeping on this inflatable mattress for the last 15 nights we are excited at the possibility of getting to sleep in our own bed.  We started the day off letting our nurse know we are scheduled to leave today and if she could help facilitate this process we would be much appreciative of that.  She said she understood and would do everything she needed to get us out the door.  We needed to get clearance from the oncologist, neurosurgeon and get our chemo.  If her blood counts are good after all that we could go home.   Well we got sign off from the oncologist pretty quickly but we had to wait to get the chemo until 1:30PM so we knew we wouldn’t be leaving until the afternoon.   Right around the time we were waiting for chemo I asked if they have sign off from the neurosurgeon yet and they said they were just waiting to hear back from them.  I laughed and said if you are waiting to hear back from him specifically it was going to be a while since he had just left the country last Saturday for the next two weeks.  Once they heard that they called the neurosurgeon that was on call and he was in surgery so we would have to wait until he got out to get the clearance.

Chemo was given but still not clearance.  Finally about 5PM we got the word that we have been signed off on and they were putting together the paperwork.   I have never been so eager to be in my own home.  In a way it was an accomplishment to me just to be bringing our baby home.   I told Audrey we were going home and the picture to the right was her response.

Now we had to get all this stuff that we had been amassing over the last 16 days home.  Between the stuff Audrey was given from the many cancer foundations to the things from nurses and friends we have collected a lot of stuff.  And we had all of Melissa and I’s things to take home.  Once they said the paperwork was coming we started packing.  3 trips and with the wagon the back of the van was filled with stuff and the paper work was done.