Audrey’s first 3 years of life have been anything but normal. When she was born the pediatrician that does the initial health assessment noticed a dimple. He mentioned to us that it’s probably nothing since everything else is perfect but let’s get a ultrasound to check for spina bifida. During that ultrasound it was found that she actually had a mild case of spina bifida occulta and a tethered spinal cord that reached all the way down to L3 and was attached to the side wall. For one the spinal cord should stop in the Thoracic region (mid back) on the spine and not extend into the Lumbar region. Two it should be allowed to freely flow up and down when you flex your spinal column. A tethered cord is stuck to the wall and over time gets stretched on so much it starts to lose function. It was determined at 10 weeks they would go in and fix the tethered cord as well as fix the spina bifida.
The day came for the surgery. Audrey’s surgery was scheduled for 4 hours. After 5 1/2 hours the surgeon came out and told us the surgery didn’t go exactly as planned. The spina bifida was fixed and went well but the spinal cord was different that they have ever seen. Audrey’s spine was different color than either of the surgeons had ever seen in their 30+ carriers as pediatric neurosurgeons. It was also forked (which is not normal) and had a small mass that they decided to leave in due to the risk of loss of function if removed. At that point we were told they had no idea what function Audrey would have going forward due to the unknowns.
Time progressed and Audrey grew. She was somewhat delayed in rolling over, crawling and walking. So we were sent to physical therapy where she began catching up and finally walking.
After that everything was progressing well. The neurosurgeon continued to follow up with us. At around 1 1/2 years old an MRI showed that she had become tethered again and that she had what he called a syrinx (fluid filled cavity in the spinal cord) that he was watching but not overly concerned with unless loss of function started showing in movement, and bladder or bowel control. Time went on we kept watching and getting MRI’s to check and no symptoms had evolved.
So about January of 2015 we start noticing that Audrey is regressing in her potty training. We know this is a symptom of the already known spinal conditions but could easily just be a 3 year old not wanting to stop what she is doing go to the bathroom. Over time and many different approaches at getting potty training back on track we started to worry it was more than 3 year old attitude. We knew we had a routine MRI coming up for a normal checkup so we told the doctor about the possible bladder control issues so he changed the MRI to a more through scan. The scan came back with shocking results. We were for the most part prepared for the doctor to come in and tell us that he needed to go back in to Audrey’s back and fix the tethered spinal cord and drain the syrinx. When the doctor came in and told us she had a large rapidly growing tumor in her spinal cord we were both thrown for a loop. The initial theory based on the location is it was most likely one of 2 different types of tumors and neither should be malignant (cancer). So we walked out that day shocked about the tumor but with hopes it wasn’t malignant. At least some hope. During the MRI the technician saw the tumor and tried to get quick authorization to do a follow up MRI with contrast and was denied so the doctor ordered a flow up MRI with contrast. This will show the full extent of the tumor and let the doctor know what he will be up against. So the following week we went back in and had the MRI with contrast then went up to talk to the doctor to see what he found out. The tumor lit up all over. This is a very bad sign when it comes to tumors. This is a very good indication that it’s malignant. Again we were thrown for another loop and reeling with fear, frustration and the unknown outcome of what will be. Surgery is scheduled for June 16th, 2015 and the fight begins!
So all the pre-op testing has been done. Blood has been donated by Ira (Dad) and is ready and on standby. We have done everything we can do now it’s time to hand off our baby girl. Going in the only thing I prayed as she is walking in was God please let her be able to walk out. Not yet knowing what the next 7 1/2 hours of surgery and next week of testing would reveal.
We checked in and went into get pre-op room to take vitals and answer all the questions we have already answered a hundred times. While they were asking us questions Katie the child life worker came in. She sat on the floor and showed Audrey her anesthesia mask. Then she showed her a bag of different scents she could add to your mask and stickers that she could decorate it with.
Audrey picked watermelon and Katie and Audrey spread the gel in the mask while we talked to the doctors and nurses. We changed Audrey into her hospital outfit but she refused to put on the hospital socks and chose her pink Minnie Mouse shows. It was time for her to go back so we took one last picture and Katie, the nurses and the doctors set off for the OR. You advised them to get her under before they tried to take off the shoes.
They said the surgery could take 7 to 9 hours. The doctor had gotten insurance authorization to use the CO2 laser which should lesson the collateral damage cause by the tumor removal and lessen the loss of function.
We started one of the longest waits of our lives. We had breakfast in the cafeteria, walked around the hospital, had lunch and even had a few friends drop by to break up the time. My watched showed we walked about 4 miles that day. During the procedure every couple of hours or so the OR nurse would call and let us know things were progressing and her vitals were stable. Finally we got the call from the OR nurse that the operation is finished and they surgeon needs to talk to us in the OR waiting room.
The surgeon came out and we know him well enough to know it wasn’t good news. The tumor wasn’t one of the couple tumors he thought it might be. The tumor came from the muscle and had pushed and ripped its way into the spinal cord. This created a bunch of hard to remove scar tissue which was only able to be cut with scissors. He couldn’t tell us anything about what function he expected post-surgery because of this. They biopsied the tumor twice during the surgery and it was teaming with malignant cells. No doubt now she was fighting cancer. Now the question is no longer only will she walk out of the hospital but what kind of fight are we looking at.
Within a few minutes we were with Audrey in the PICU and trying to process what we have learned. We were confused, scared, pissed off and any other emotion you can think of all at one time. Our brains hurt as we were trying to comprehend what was going on and what the future might look like. The first thing you think about is the worst case scenario. What if the cancer has spread? What if it’s in other parts of her body or even her brain? Then what? For now we needed to concentrate on what was in front of us. Audrey has just successfully gotten through a 7 hour surgery and is in the PICU stable and on the ventilator. We started our first night of attempting to sleep. (We weren’t very successful)
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.
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.
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.
We have been home for a couple weeks and hiding from the world and the germs they carry. After being home for a couple of weeks we are gun shy from going to any event or having Audrey exposed to anything that might put us back into the hospital. We would rather be stuck in our house than in the hospital. We are coming up to one of our longest weeks of outpatient chemo and not looking forward to it. We have another week of Irinotecan and Vincristine this week. That means we have 25 hours of inpatient chemo this week and of course I am traveling again for work. As it would be a very long week with Cole, Audrey and Melissa all in the same room we lean on some friends for him to hang out with which seems to help a bit. Melissa takes the first 3 days of the week while I am traveling. When I get home Melissa has had a long few days balancing the long days at the clinic so offer to take Thursday and Friday. When we go in on Thursday Audrey is very tired and actually sleeps through most of the treatment which allows me to get caught up on work emails and work most of the time. Friday she was back to her normal crazy self and I balanced watching Frozen and getting emails done while Audrey was getting her treatment. We made it through the week with Audrey feeling okay but very tired.
Monday we went back into clinic for our 15 minute of Vincristine which takes about 2 hours with the checkups, blood checks and ordering the chemo from the pharmacy. The great news is her white counts were the highest we have seen them since we checked them before the first chemo treatment. Next week we go back in for another MRI to see where we are and what the next 3 months of treatment will look like. It will decide at what point we start our radiation in Houston. Looking forward to good results and hearing everything is on schedule.
We decided when stuck in the oncology clinic for 25 hours the week before that we should try and go camping before Cole headed back to school and before Audrey started her next round of chemo that would put us in the hospital every other week for a while.
The last time we decided to go camping it was an entire failure. We had a large tent that was 20 plus years old and had reached its water proof and fabric tear point half-life. Of course the weekend we had picked to go camping was the first June 5th in Arizona to see rain since they started recording weather patterns. It rained so much that we had to abandon ship and head for the truck at about 3:30 AM where we tried to sleep and get warm. After it stopped raining the next morning we discovered everything was soaked and no way could we stay another night. We packed up and called it an early weekend.
I swore that would be our last tent camping trip as a family and it was time to start campering instead of camping. So this time I rented us a 21 foot camper that has slide out beds called a hybrid camper off of craigslist. I picked the camper up at 3PM on Thursday and headed to the house. I noticed that the brake controller wasn’t working. This lead to 2.5 hours of troubleshooting before replacing the controller box and having work manually which was good enough to head north and figure the rest out latter. We loaded the camper got everything set and headed to bed.
The next morning we got woke up by the kids at about 5:30 AM ready to go camping. So we got up and started getting the last of things ready and at about 7 AM we headed out. The drive up went smooth. The truck pulled well and we had decided on the neighbor’s recommendation to head to Forest Service road 300 just passed Pine Arizona. I had looked at the map and found a small pond\lake called Potato lake and decided we would camp near there. After driving for a bit down the dirt road we found a spot that looked perfect. We pulled in and had the camper setup by 11:45AM.
After all the work getting the trailer level and beds pulled out and setup it was time to have a cool refreshing beverage and start relaxing. Audrey had tea party as soon as we got sat down. She served us all tea cups of water as we sat and enjoyed the forest.
At about 1 we were still just sitting around hanging out and lighting struck scary close. Within a couple minutes it was pouring. We all went inside and took good naps. Cole and I laid down together and Audrey cuddled up on top of Melissa. By the time we woke up the rain had stopped. Melissa and Cole went for a walk to Potato Lake while I got the fire ready. Wet wood made it slow but I had enough gas to counter it. Plus gas and fire is always cool.
Audrey had been asking about roasting the marshmallows all day. So once the gas burnt off we roasted up a few. Then we cooked our hot dogs. For dessert we made s’mores. Watched the fire burn a little and headed to bed.
Audrey isn’t sleeping well still and she is wanting to eat at odd hours of the night. So the first night of sleep didn’t go all that well since it’s hard to cook a hot dog at 12:30 AM with nothing but a stove flame. We finally got it done though and she had her night snack and back to bed. The rest of the night was up and down with her which is nothing new.
Next morning we got up about 7 and decided we needed to head in to town since I needed to fix the rope pull on the generator that had come with the trailer. I tried to get it setup the first day and on the first pull the rope pulled right out of the generator. I tried to fix it with pliers but needed a 10mm socket or wrench to break them loose. Since we were going into town anyway we decided to get breakfast which was very good at Miss Fitz 260 Cafe. Then stopped by Wal-Mart and got the supplies and tools we needed. By the time we got back to camp it was lunch and nap time. While the family napped I fixed the generator and while I was fixing things I decided to look at the trailer breaks again. I noticed the wire harness I had bought didn’t match what I remembered the wiring looking like on the original so I switched a wire around and now the trailer breaks worked correctly! Now it was time for a short nap for me too.
After naps we headed off for a family hike to Potato Lake. It’s about .5 miles into the lake from where you can park. It was so nice to be in the cool air in the middle of nowhere with no one around. Everything was so green and the air had that sweet warm Ponderosa pine tree smell. We walked to the lake and skipped and threw rocks for a while before walking back
When we got back we got the fire started and just sat around telling the kids stories about us growing up and the different friends we had grown up with and camped with when we were kids. He all just hung around the fire and enjoyed being outside and in each other’s company then headed to bed.
This night was no better than the one before but we had precooked the hot dogs now that we had the microwave working so we could just pull them out of the fridge when she wanted them. She had one at 1 AM and 5 AM plus was up countless times not happy about one thing or another.
We got up the next morning and decided that we should start getting things picked up then head out for a walk before we finish packing up and heading home. There was closed dirt road just up from the camper that I thought would be good for a walk and to have Cole ride his bicycle. Well it was good for a walk anyway. After carrying Cole’s bike up the hill he rode it for a couple of minutes and decided it was to hard and just walked with us. We had a nice peaceful walk and again enjoyed just being outside and the cool weather up on the rim.
On the way back I figure since Cole’s bike was already up the hill I should ride it down. After I carried Audrey back to the camper I headed back up the hill and got on Cole’s 20″ bike and started my trek back to the camper. It actually went much better than Melissa had expected and I didn’t even crash once. The kids were screaming at me while I was flying down the hill.
After surviving my perilous decent we finished packing up the camper and getting it road worthy for the ride home. Cole helped pack up the small stuff around the trailer while I folded up the beds and raised the legs. We hitched the truck and pulled out head for home at about 11:30 AM. The trip down went super easy and the trailer brakes working correctly made it feel easy to tow while going down the steep down grade coming off the rim. We didn’t stop once between leaving and pulling into the house about 2.5 hours later.
In the end we were super happy to be blessed with Audrey being well enough to go and getting one last family weekend in together before the long hospital visits start and Cole heads back to school. Leaving was bitter sweet. The weekend was amazing and leaving meant we had to return to reality and a week full of test and doctors’ visits. Many memories were made and as we don’t know what the future will look like for this family we need to make them every chance we can.
This week we entered into a new level of chemotherapy. We started a round of treatment that will test the ability of little Audrey’s body to produce white blood cells and keep fighting as we continue to tear it down. This is also a big week for Cole. It’s his first week of second grade. The Children’s Cancer Network has been very kind to us and has supplied Cole with everything and a little more than he needs to be prepared for the year.
We start our week off all dropping Cole off for school and loving on him as he is super nervous. He does fine once in line and heads into the school without even looking back. He is getting so strong. I told Audrey to smile when I took the picture.
Then we headed to the Oncology clinic to get a check up and make sure Audrey was healthy enough to get chemo. Everything was good and we got the green light to check in for our first round of inpatient chemo. We finally got over and into our room at about noon. They said that one of the chemo’s would burn her kidney if she wasn’t at a certain hydration level so we waited to reach that point getting pushed a lot of fluids. Finally at 9 PM we were ready for Chemo. The first was the normal Vincristine then at 11 PM they started the first of two chemo’s they take 24 hours each to administer.
That evening they decided the UTI that Audrey has been hospitalized the week before was a resistant strain and required a contact restriction and isolation. This was troubling as it meant we had to stay in our room and that wasn’t going down very well with the 3 year old. It also jeopardized the possibility of us staying at the Ronald McDonald house in Houston which made it even more of an issue. Audrey continually asked to go to the Play room but we couldn’t let her. We talked to the nurse’s, the doctors, and anyone that would listen to that this was silly. The infectious disease doctor even came by and looked her over and stated in his notes that there is not need for the isolation and contact restrictions as this virus is only resistant to one antibiotic but sensitive to everything else and this has been common knowledge for over 50 years. The next morning during rounds I brought up the notes and asked what could be done. Then a God moment happened. As the team of medical staff was leaving our room the infectious doctor just happened to walk by and talked to the doctor on the floor and convinced him it was worth trying to get her cleared. By noon they came back and let us know we were released from restriction. We were in the playroom with in minutes. It was a small victory but meant a lot to us.
Met the radiation oncologist yesterday finally as well. Been waiting for this appointment for a long time. The doctor was very nice. We asked about radiation toxicity of the Brain and he said that even though the entire brain will have to be irritated because we are using proton it will not cause the hearing loss that photon would and he thinks there is a miss understanding of what does and doesn’t cause IQ loss due to radiation. So really no clear answer but he thought it would be less than we expected which is good. The second concern is the growth of her spinal column. Again using proton reduces the damage and spares some of the tissue and cells that are required for growth. So though her spine will be shorter than if she didn’t have radiation it won’t be hugely obvious which again was not a clear answer but positive.
She will finish up chemo tonight and be released in the morning. Week one is complete. 5 more inpatients to go in this treatment cycle. Hoping they go smoother.
Life has been incredibly busy since my last update. This mix of chemos is definitely living up to its expectations. We have been in and out of the hospital the last few weeks for fevers due to low white cells in her blood. At the same time I have been traveling for work on and off which has made balancing family life and work life incredibly hard for the whole family. I have been away from home more days in August than home between hospital stays and work travel.
We were released from the hospital on the 13th of August only to return on the 20th which was 4 days before our next inpatient. Audrey was given floods and antibiotics for the next 4 days and they finally let us go home Sunday evening the 23rd. Her white cells were on the rebound and her fever was gone. The next day I left for another trip and Melissa took Audrey in to check out her white cells expecting to come back on Tuesday to start chemo. The white cells were so good they surprised us by admitting her to start chemo that day instead of the next. Which through off the family plans yet again.
I returned from my trip Thursday morning and took the next two days at the hospital so Melissa could get a break. The last trip to the toy closet Audrey picked out mobile to paint. She found it you put all the colors together you get brown. So all the pieces got colored brown.
Chemo went well but this one made her feel very sick so she hasn’t been eating much. On Saturday before we went home they checked her blood and it was already low on white blood cells. Unfortunately we know this meant it was only a matter of time before she got a fever again. We had a nice day and a half at home for the weekend and got to spend some quality family time together and with good friends which really helped left us up as a family.
On Tuesday I again headed off for another few days away on business and Melissa and Audrey headed to the clinic to get blood levels checked. As we had expected her white cells had gotten annihilated by the chemo and were pretty much nonexistent at this point but no fever. They allowed her to go home but said to isolate the family. One spec of germs would send her into a fever. Of course that only lasted a day and the next morning when they got up her fever was on the rise. After a quick stop off at Grandma’s to play marble towers they headed off to the hospital where they got admitted again.
We are hoping for a short stay and to make it home before the weekend so we can have a few days before we check back in on Monday for the next round of treatments.
So the last stay we made it home on Saturday evening and had 2 and a half days at home this time before heading back into the hospital for her next 3 day chemo. It was very nice to have the family home for the Labor Day weekend and just get some fun quality time together.
Melissa took Audrey in for blood counts on Tuesday and her white counts had skyrocketed from the neupogen shots. They are definitely doing their job but starting to cause her more and more bone pain. We have been giving her pain medication which has done a really good job of helping with the pain. She shocked the doctors with her numbers and they got us admitted and started on the chemo. Things went well during the stay and we got in and out in the expected time.
Every Thursday they have a special event and this week they had Comicare stop by with Spiderman, Ironman and Super Woman. They were very awesome to Audrey and she really liked getting to meet them. We were able to check out on Thursday evening and go home which was very exciting to us. The Yellow tricycle is what she calls her motorcycle. She has been known to drift around the corners in the hospital when she gets it going fast enough.
Since Thursday we have been able to be home and start preparing for our trip to MD Anderson in Houston. This has very much been a logistic nightmare and huge weight on our shoulders. As we have been working through the needed preparations for us to leave town for 2 or 3 months we have been continuously overwhelmed by generosity from the community that supports us. From people we know well to people we have never met and everyone in between that has stepped up and helped us out in many different ways with prayers, support and generosity. I am more and more humbled everyday along this journey. There are truly good people in this world that understand what making a difference means.
I said the other day that I am forever a different person from this experience and my life will never be the same from here out. The lens I see life through have been shifted in a way that will forever change my outlook of tomorrow and the tomorrow after that. As I contemplate the realization that cancer might take Audrey at any point and that we aren’t guaranteed tomorrow either I think if we continue to live life looking beyond tomorrow we will continue to miss the moments that matter and wonder where it all went if we do get to where we were looking. Live every moment of everyday and just be thankful for the chance you have to be in it.
Just realized it’s been two weeks since I have updated the page. Man time has flown with a flurry of activity and hurry up and waits in the last couple of weeks. Since my last update we ended up back in the hospital on Wednesday the 16th due to fever and low white blood counts. Audrey’s ANC was at 0 until Monday the 21st when it jumped to 260. We had to be at 500 to be released and eating. The last round of chemo had caused a severe case of mucositis. Because chemo attacks the dividing cells in the body the mucus lining of the body is also attacked which causes serve pain and ulcers throughout the entire tract. For two days she wouldn’t even swallow her own spit. She ended up losing a bit of weight during this time as she wouldn’t eat or drink. Finally Tuesday her counts came up to over 500 and all she had to do was eat and drink to leave. Once we told her that she tried a lot harder and we were released at about 1 PM on Tuesday the 22nd.
Because of the hospitalization Melissa and Audrey missed their flight on Sunday the 20th to Houston and we missed our first appointment at MD Anderson on the 21st. We got everything rescheduled for the following Monday the 28th but knew once we got released we wanted to get to Houston as quickly as possible.
Once we got home on Tuesday Melissa and I started packing the van and getting everything ready to leave. We arrived home at about 2 PM from the Hospital and at 5:30 PM Cole and I were on the road. We stopped by and picked up our friend Randy who helped me drive 18 hours straight through to Houston. Cole was a trooper through it all he never complained and was mostly upbeat through the entire trip. Once we arrived in Houston we checked into a hotel by the airport where I got caught up on work emails and took a few short naps before picking Melissa and Audrey up at the airport.
Friday was our first appointment and experience with the behemoth that is MD Anderson. I was talking to our case manager down here and she said she was told this is the largest grouping of medical complexes.
in the world. If there is a larger one I would be surprised. We saw our Oncologist who was very nice and super informative. We are very excited to have him review her case and let us know what he thinks as well. It was a super busy day. They wanted to get blood counts but since we hadn’t been accessed yet at MD Anderson we had to go for a chest x-ray on the 3rd floor then get accessed on the 8th floor before going back to the 7th floor to get blood drawn and deaccessed.
While we were at the Oncologist we got a call from the Ronald McDonald house that they had a room ready for us which was great since we had been staying in hotels the 2 nights before.
Monday we went to our first consultation with the proton therapy team and were able to get answer for all the questions we have been waiting to ask for months. In the end we got the answer we expected which is there will be diminished IQ which means slowed learning which will just require adjustments when going through school. As well as spinal growth issues which they will watch and try and help with growth hormones if needed. Following the Proton visit on Monday we say the ophthalmologist to get a baseline vision test since radiation can effect vision as well.
Tuesday we had a meeting with the audiologist to test hearing and the endocrinologist to get benchmarks on thyroid levels before radiation.
Wednesday we had a first radiation simulation where they start to get the reading for the radiation plan as well as make her mask that will hold here still while getting the treatment. Here is a picture before bed with Audrey’s lines on her stomach and I asked her to give me a cheesy grin and thumbs up. This is what I got.
That brings us to today where we had our CT Scan that started with getting accessed at 7:00 AM then waiting for the CT appointment at 10:00 and finally getting done about 1:30 with the scan and waking up from sedation around 2:30. What we thought was going to be a short day at the hospital ended up taking a lot longer. Seems that we would be used to that by not by not what we expected today.
Tomorrow we just have a checkup with the oncologist then think we will take the kids to Herman Park which is very close to where we are staying. Staying in a single room all together is going to take some getting used to and some perseverance from all of us.
Another week in Houston and another week closer to going home. It’s hard to believe we have already been here two and a half weeks. The weather has been decent in the upper 80’s low 90’s and mostly sunny. Not being used to the humidity though makes it a bit sticky.
We are starting to get used to the pace of appointments while we are here and figuring out how to get from place to place without as much confusion. It was still quite a busy week this week. Audrey had chemo every day and then they had Audiology on Monday, MRI on Tuesday the first radiation treatment on Wednesday and her Oncology checkup on Thursday. Friday we just had radiation and chemo. To add some crazy to it I had to travel for work on Tuesday and Wednesday so Melissa was on her own for two of them.
Good news is everyone survived and we managed to get through the week still in somewhat good spirits. Living in the same room and sharing 2 double beds definitely has it’s draw backs but having somewhere for the kids to play and the few activities a week that come through makes it worth the struggle of community living. We try to get out of the house when possible to pass the time. This weekend we went and walked around the Galleria mall and had dinner on Saturday and got a chance to see some friends that were in town and get lunch with them on Sunday. On the way back from lunch we stopped at a nice playground we have found and let them try and burn some energy before we went back to hangout in our room. The poorly designed WiFi network is killing me. I have offered to fix it but they haven’t taken me up on it yet. Maybe I can get them to look at my LinkedIn profile to see I know what I am talking about.
Next week we have checkup with the radiation oncologist on Monday then radiation treatment and chemo after that. At the checkup we should find out how many treatments they will be doing which will give us our estimate of when we will be going home. The great news is we only have radiation on Tuesday, Wednesday and Thursday this week with an Oncology checkup and radiation on Friday as of now. If it all stays the same it could be a much more relaxed week.
Back home we hear the house and animals are being well cared for and are doing well. There is also a fundraiser and birthday party being planned for Audrey on November 14th in Gilbert by some good friends of ours. I am sure it’s going to be a great event that everyone will enjoy. Please share the flyer with anyone you think would enjoy the event and would like to come support Audrey.
Trying to post every week put it seems a week snuck by and here we are 2 weeks later. We seem to keep ourselves pretty busy each day although it seems to be a lot of hurry up and wait then day slips by before you know it. We started last week off meeting with our Radiation Oncologist. I asked her if they had read the MRI scans yet. She hadn’t looked at the report yet so she read it real quick. The report read that the spinal area cancer has slightly worsened. Not exactly what we were hoping to hear. With that being said she feels that this is the first MRI on this machine and when we looked at the comparison images you can clearly see a difference in sharpness of the pictures which could just mean MD took a better picture than Banner so though it’s very discouraging to not see the huge improvement we were hoping for in doesn’t necessarily mean we have actually lost ground just not gained any in that region. Later in the week we were able to talk to your oncologist and he said his read of the MRI was the same. He feels it hasn’t changed but said with Rhabdomyosarcoma it can sometimes be difficult to tell if treatment is effective because even if the cells are dead they show up on the image as there. He said if it’s not getting bigger we are OK. Of course we will continue to watch that area. He also said that the radiation oncologist and he will be presenting Audrey’s case for review to the entire Rhabdo doctor group at MD Anderson this week for everyone to review. We are very happy to have so many amazing doctors involved and reviewing her treatment protocol. This week however both doctors told us they are happy with her condition and we will continue to move forward as planned.
She is now done with 13 of her 25 treatments and seems to be doing pretty well. The 5 day chemo from a 3 weeks ago killed her blood counts so we had to do a red transfusion last Friday and this Friday as well. They want her Hemoglobin’s to be over 10.5 as they feel this makes the radiation more effective.
Cole has been doing well at school and seems to enjoy playing around the Ronald McDonald House. He makes friends and then they leave and then he makes new friends. It’s amazing how quickly the faces change with the constant turnaround of families. We have made some good friends and when they get to go home you have mixed feelings. Happy they are going but sad you won’t have them here to help pass the time with. Then there are other families that you can hardly wait for them to leave.
The last couple of weeks we have really enjoyed the different groups that have come to serve here at the Ronald McDonald House. Some come in and serveus food then leave never talking to the families. Others come to bring love and encouragement. The crew from Southwest Airlines came by and brought the party. They started working at about 6 AM preparing the food and fun for the day. They brought pumpkins for the kids to carve, a face (or head)painting station, a DJ and adult drinks! The food was really good as well. It started at about Noon and went until 8. Audrey got Olaf and Cole was a Gladiator. It was great to see the kids dancing and the families getting a chance to just relax and have fun.
On Sunday an amazing group of ladies came by from a local sorority. They cooked a great breakfast and then just played with the kid’s. I just sat back and watched as the kids and ladies ran around playing and laughing. It made my heart smile.
Then just last night we had another amazing group of people that came to love on the house. They had some wild and crazy friends along with them as well that made it that much more special. And of course another face (or head) painter that painted amazing things on every kid that wanted one. Audrey wanted the Hulk on her head and Cole got his whole face painted as Ironman. She painted none stop for many hours until every kid was done that wanted one. There were many others that have come and served as well that were amazing and engaged with the families.
Next week Audrey is getting 5 more days of chemo and radiation. We have Cole’s birthday on Friday and Halloween on Saturday so I am sure once we get threw it will appear to of flown by. We have been told that MD Anderson throws an over the top celebration on Thursday. Can’t wait to see all the fun that is going to be had this week.
And of course looking forward to watching the KC Royals win the World Series this week. Wish I could make it to a game but will enjoy watching them with Cole as he has really gotten into watching them with me this year. Guess KC is going to have to get to 3 series in a row so I can finally make one next year.
In some ways it seems like this trip has been an eternity. In other ways it has been a blur of appointments, events and new friendships. When we got to Houston in September it was still very hot out. Now we have enjoyed many fall days and a lot of rain. We have settled into one room living and are very much looking forward to having some walls between us when we get home. It should be interesting to see how the kids adjust to having to be alone at night though. The first weekend in Houston we got to attend the last home game of the season for the Houston Astro’s then last night we got box seats at the Houston Rockets game thanks to Dwight Howard. Many amazing memories have been formed that the cancer can never take away.
Audrey has left her mark all across Houston in a way that only she can do. There is no escaping her smile and beautiful eyes as she reels you in and gets anything see wants. Unless of course you are her parents that watch this everyday and laugh as she snares another passer by. She saw a Frozen themed tea set at Target while we were looking through the toy isle shortly after getting into the house. She asked me to get it for her and I said no since she gets a new toy pretty much every day. I told her maybe for her birthday. She then told every person from that point forward in detail about this tea set she wanted. We had at least 5 people ready to buy that tea set for her birthday. It wouldn’t take long of course until it finally showed up one day when she was waking up from anesthesia. Our new good friend Laura from child life had left it on her bed one day. Now that she had that she quickly moved on to her new request which is 2 watering pots. She says she needs one for our garden at home and one for the garden at Grandma Jones’s(GJ’s) house. She now has a few people already committing to having those for her before we leave Houston for her birthday. She even told Dwight Howard what she wanted while he was here at the house. So we might end up with a few extra. I stand by my claim that God has imparted a charisma in this girl that is undeniably inescapable. The oncologist told us no kid has every come in and won the office over in a way that Audrey has. When she walks into clinic the office stops to see Audrey come in. Audrey has clearly been put on this earth for a very obvious reason. To make people smile for as long as God lets her.
In the last four weeks we have been incredibly busy. Last week had an amazing event at the Proton center called Mad Scientist where Laura and her team of volunteers had put together a number of fun experiments that had Cole and Audrey completely engaged for the full 2 hours of the event. The Microwaved Dove soup, created “spy bombs” using zip lock bags and vinegar in water and a bunch of other really fun stuff. You can see all the fun pictures here at MD Anderson Proton post. The following day we had fall festival at MD Anderson which is really just inside trick or treating on streroids at MD Anderson. Unfortuenly Audrey was in radiation for the event but Cole was able to walk in the costume parade. There were thousands of MD Anderson workers standing shoulder to shoulder handing out candy for an unbelievable distance. When Cole’s bucket filled up the handed us a new bag. When that bag filled up they handed us another. By the time we got done we had so much stuff he couldn’t carry it. I would guess he had over 30 pounds of candy and toys. Then we had Cole’s Birthday which saw an amazing community come up and surround this awesome kid. Melissa’s mom had an idea to have as many people as they could get to send Cole birthday cards. 2 of our friends started events to send Cole cards that we didn’t know about. A few days before his birthday cards from all over the country started pouring in. He even got a card from the UK and another card from a lady named Grandma Verra that was written in Russian that we had to have translated. He will never forget this birthday and neither will we getting to watch his face light up with every card. We are still getting a few cards a day almost a week later. What an amazing birthday. And of course Cole’s birthday is followed by Halloween. A week before we met some new friends that had volunteered on Friday night for dinner and activities. They invited us over to their house and neighborhood for trick or treating. We took them up on the offer and went over to there house and enjoyed an hour or so of normalcy in our crazy world. Cole was Ironman and Audrey was Princess Hulk. We bought a Hulk costume and Melissa made a tiara and tutu to complete the costume.
This week has been a very busy week as we have radiation and Chemotherapy everyday. We have also had doctors visits and a blood transfusion added into the mix which have lead to some long days of running from one place to another. While visiting with Doctors this week both the radiation oncologist and the oncologist have given us permission to go home on November 11th as long as her white cell counts are good enough. This is great news and what we have been looking forward to for many weeks. I asked the radiation oncologist what came of the meeting with all the Rhabdomyosarcoma doctors. She said they all agreed the current protocol is the best chance of success but still can’t tell us if success is even possible. With her case being so unique there is nothing to compare it against and the best she could give me is they are cautiously optimistic about the results so far and we will just need to continue treatment and evaluate things as they progress. We will get an MRI in a few weeks to see how effective the radiation has been and the oncologist here in Houston is sending us home with a modified chemo plan going forward as well as promising to stay connected with us going forward. All we can do now is keep doing as they recommend and enjoying everyday that it affords us going forward.
We can’t wait to be home and appreciate everyone one that have come along side of us in this journey so far and the ones we have yet to meet. God is good and we thank him everyday for the time we get with this beautiful angel on earth. It may be months or decades but we do know that when it’s time she will shine in heaven like no other because her presence on earth is unmistakably God inspired. We pray everyday for healing and comfort as she progresses through this journey.
The last update we were preparing to leave Houston. We had been getting the room packed up and arranging plans to get Melissa and Audrey home when they landed. We were saying goodbye to all our new friends and just getting ready mentally and physically to head home. As with all things in our journey things would not go as planned. Audrey had been very sleepy that day and everyone just dismissed it as being run down from radiation. At about 9 PM on the evening before we are supposed to fly out I checked her temperature and it’s on the rise. By 9:30 she hit 101F. Anything over 100.4 requires an ER visit as we know all too well. I called the doctor and he tells me to head in to get checked out. Audrey and I get dropped off at the hospital. They check her temp and it’s only 99 now but they still want to see her. So we get checked in and they check her blood counts and find that her white counts have dropped and her ANC is below where they can release us. They tell us that we aren’t leaving for 48 hours until her blood has time to see if it grows anything in the culture. Party is on Saturday and that puts us at leaving on Friday. I spend the next 48 hours pushing the staff to get us out as soon as possible. Everything goes well and her fever stays down and nothing grows. So at 9 they tell me we should be going home and at 11 I get the official we just have to run one last antibiotic and we are good to go. That starts us into a furry of preparing. I find the next available flight out and book Melissa, Cole and Audrey on the 6 PM flight to guarantee they will make the party the next day. We get discharge at about noon then grab some lunch and head back to get backed up. Melissa has been packing and getting things ready since she got up in the morning so we are looking pretty good for packing and getting out on time. Our friend Randy has come into town and has been helping as well, which helped a ton. Somehow we have a lot more stuff than we left with but we got it in. We loaded up and headed to the airport and got them through security.
Now it’s time for Randy and I to dig in and head west. We left the airport at about 5:30 PM with 17 hours to go until the party starts and 1,174 miles to go. Randy drove to San Antonio where we stopped to get gas. I slammed a concentrated energy drink and started going. Randy slept between gas fill ups and I got us to Las Cruces, NM before I had to give up and Randy was able to take us home. I got about 45 minutes of sleep and hung out with Randy the last 5 hours. We were both a bit sleep deprived crazy which led to some good conversation and music choices. We completed our trip pulling into the church parking lot at 9:30 AM to join in the fun. I was so tired but happy to be there. I remember bits and pieces of the party as I was there physically but mostly checked out mentally.
Audrey and Melissa arrived to the party shortly after us and had a great time. It was great to see all the people that turned out to support us and just be part of an amazing day. Words cannot explain how touched we were to see all the people that had come out to support Audrey and our family. They had setup a bounce house, cotton candy machine, root beer float station and of course the pancake area. It was truly a very special day. Thank you to everyone that helped out and attended the event!
The rest of the weekend we spent just trying to get rested and ready for another week. Monday we were right back at it with an appointment with oncology to review what happened in Houston and what the plan looks like going forward. We got scheduled for a blood transfusion the next day and scheduled to start our 6 day inpatient the next Monday. After the blood transfusion the rest of the week was spent at home just getting rested and leaving like a normal family. By the end of the week we had almost forgotten all the junk in our lives and just enjoyed being home and being together.
Inpatient Monday finally came and we are back to hospital life. The first day back was full of catching up with all the doctors, nurses and staff that make our stay so amazing. Everyone wanted to hear about our trip and how everything had gone. The Child Life team had a little celebration surprise planned for us when we got back. When we walked into our room they had it decorated for her birthday and they sang us a radiation is over song and happy birthday. It was a great way to start off our stay. We are getting settled in and back to our routine.
As I sit here next to Audrey on the eve of Thanksgiving I think of all the people that have posted everyday what they are thankful for. I think for our family it’s pretty simple. We are thankful every day that we get to spend another Thanksgiving together as a family of 4. As we start into the holiday season knowing that it will be spent with our Cardon family we realize that the way we look at the season will be much different this year and every year after. Don’t worry about the perfect meal or the perfect party. Don’t worry about getting the perfect gift or decorating the perfect tree. Just make perfect joyful memories because that is what truly matters. Only God knows the beginning and the end and the rest of us just have to enjoy the time we are given in every moment.
Happy Thanksgiving! Eat, drink and have fun!
As we spent our Thanksgiving with our Cardon Children’s hospital family getting Chemo we are here for Christmas as well. Can’t believe Christmas is tomorrow. Audrey finished her 6 day inpatient chemo on the 1st of December. The next week we had off from chemo but still had a number of clinic visits. Everything checked out fine and we had a good week at home. The following week on the 7th we went in for chemo but Audrey’s Platelets were to low and still needed to recover. They said the radiation causes them to recover slower for a while. Nothing ever goes as planned. It really makes planning work trips difficult. Audrey went back in on Wednesday and her platelets had to be 75 to start chemo. She came back at 77 and was good to go. This chemo is the nasty stuff. One of the chemo causes her mucus areas to die off and come back which is super painful. Another chemo really beats up the counts and causes her to feel bad. Before they can start these chemo’s she has to be very hydrated. While they were checking her hydration level they noticed white cells in her pee. They suspected a UTI and they were correct. While we got chemo they also started treating the MRI. Chemo treatment was done late Friday night so we figured we could go home on Saturday. There goes that planning stuff again. Turned out the UTI virus type she had needed an IV antibiotic and they couldn’t reach insurance on the weekend to get approval so we would have to stay until Monday. We knew we had an MRI scheduled on Monday at 11AM that we thought we had scheduled far enough out we wouldn’t be inpatient. As has been the case a lot lately we were wrong. So we did the scan registered inpatient. On top of that her blood counts came back with low Hemoglobin so she needed a transfusion. By the time her 4 hour MRI got done and her 3 hour transfusion it was 9PM before Melissa and Audrey got discharged. I was already on my way to Portland thinking I had scheduled around the MRI with plenty of time.
The week went well and they got out patient chemo on Wednesday. This chemo can be given regardless of the counts and they noticed her platelets were low again so scheduled a follow up on Friday. By Friday she had quit eating and drinking because her throat hurt so bad from the mucositis. The nurse practitioner took one look at her and asked me if I was going to be mad at her if we had to stay. I said based on how she was looking I was somewhat expecting it. Her platelets had dropped to dangerous levels and she needed a transfusion. Plus her white cells were completely gone from the 3 day chemo. That coupled with not eating and drinking and the severe throat pain it was time to check in. Since then it has been about controlling pain and getting IV hydration and nutrition. Yesterday after 7 days she finally reached the bottom and today has been the first day in a week we have seen positive gain. Her ANC was up to 400 so she is recovering and you can hear in her voice that her throat is getting better. Tomorrow we are hoping to see her start drinking and maybe eating to start working her off the IV nutrition. So we can go home a couple days before starting our 6 day inpatient chemo early next week.
This week leading up to Christmas has been a very busy one around the hospital. We have had incredible donors and foundations help to make this week special. Audrey was chosen by a foundation to receive a custom made American Girl Doll. The doll was made to match her complexion, eye color and even earrings. She has the same bald head for now but when Audrey gets her hair back we can send “little Audrey” off to the doll hospital to get her matching hair put in. Another foundation came by and filled the lobby of the cancer floor with toys and invited us to all come out and take anything and everything we wanted. It’s called Blake’s Miracle Foundation. They were amazing and Audrey chose a number of very nice toys. Then there was another foundation that a girl named Savannah created a couple of years ago. She is a young teenager that chose a few years ago to start raising money to buy kids at Cardon with cancer presents. This year she raised around $4000 that she split between 4 kids that are stuck at the hospital over Christmas. What an amazing young lady and I can’t wait to see the amazing things she continues to do through life.
As I sit next to Audrey’s bed on the oncology floor of the hospital I can’t help but think of where we were last year. This time last year Melissa and I were sitting on the deck of the house we had rented on the beach in Florida drinking beer and listening to the sound of the waves crash on the beach. Wow what a difference a year can make. It causes me to rethink Christmas and what it means to me. It’s not about the hustle and bustle of scouring the mall looking for the perfect gift and getting run over by all the other people in a rush and completely missing the point of the holiday. It’s not about testing your patients as you put up with family you may or may not want to be spending Christmas with. It’s about Jesus. And it’s about taking a step back and looking at all the amazing things we have had handed to us and placed in our lives. In June we didn’t know if Audrey would see Christmas. Well here we are. Again I am reminded we aren’t guaranteed tomorrow, next week, or next Christmas. What we have is now. I plan on making memories that I can put in the memory bank and save away forever. Don’t sweat the small stuff and enjoy this Christmas now. Remember to laugh and love and to focus on the awesomeness around you.
Merry Christmas 2015 from Audrey and all of us that get to follow in her shadow.
Been a while since my last post. Sometimes when I have the time to post it’s just too hard to look back on how much has gone on in the last weeks. Audrey has been fighting so hard over the last 6 since Christmas. We were able to go home for a few days from December 28 to the 30th before returning for another week getting to go home on January 6th. During this time we finally decided that Audrey needed a feeding tube to bring her weight up and allow us to get the oral meds in her that she had been refusing. We were able to stay home for 5 days before finding out that the UTI we knew Audrey had when we went home required another stay in the hospital. This time we only stayed 6 days this time. During her stay one of her aides brought her a selfie stick. She had a good time with it. We were also able to get her 3 day inpatient chemo done while we were in. We were not scheduled to be back in the hospital for the next chemo treatment until Feb 1st.
Audrey really had a hard time being in the hospital during her last stay and really enjoyed being home having tea parties and playing with her kitchen set. We all enjoyed some normally of being home and getting to see the friends a neighbors. When we are home we stay home since it’s cold and flu season we try to stay away from everything as much as possible. As has been the case lately it didn’t last super long. We were still super thankful for the 8 days at home before Audrey’s body needed more support from our hospital family. It took about 5 days for them to get everything back in control and on her scheduled date to start the next round of chemo her platelets were too low. Since the radiation treatments in Houston her platelets have had a hard time coming back at each of her treatments. The good news is we got to go home for theweekend and spend it together. The weather was perfect and let us get outside some and just hanging out and play.
Audrey went back in for counts on February 1st to see if her platelets had come up enough or not. Turned out they hadn’t’ yet which was good for our family logistically since I was traveling in during the middle of the week. They scheduled us to come back on Thursday. A couple more days at home before returning on Thursday to start chemo really raised her spirits. During the last stay the child life team had caught on that Audrey is starting to become upset to come into the hospital. So they decided Audrey needed a schedule and something to look forward to each day to make her stay less stressful. We made counts this last Thursday and returned to our all too usual home away from home. It has seemed that the new plan from child life has kept her spirits up much more during this stay. We have 3 more days before we get to go home on Tuesday.
Audrey has been fighting so hard for so long. Her body has endured so much and continues to amaze us all at how strong she can be. This treatment week is week 30 of her treatment schedule that is currently 54 weeks long. We have been doing this for 33 weeks total and with all the small delays and traveling to Houston and back it’s pretty amazing how close to the schedule we have managed to maintain. For the last couple of months Melissa and I have had a huge decision that we needed to make about the next cycle of treatment. We had differing opinions from 2 incredible doctors. One suggested we remove the next 5 treatments of chemo as it has shown to cause liver damage with small gain against keeping Audrey’s type of cancer away. The other doctor said we can manage the liver damage if it happens and anything more we can do even if minimal to keep the cancer away is worth doing. So after asking a lot of questions and pushing back really hard we have decided to keep the next 5 treatments in place and monitor her liver closely. Not really a decision a parent ever thinks they will have to make but at least it’s decided and we can start pushing forward. Audrey has another MRI coming up the last week of February that will give us another view of what’s going on inside and how effective her treatment has been.
Whether you are rooting for the Panthers or the Broncos today I hope your team wins. I don’t have a dog in this fight. It’s been fun to watch and just for a few hours take our mind off the season we are in.
So many thing have happened since the last post. We have spent so many days each month in hospital and February wasn’t going to be any different. We had been home for a few days and in the evening on Valentine’s Day Audrey got a fever and had to be admitted again. Of course she didn’t go in without some supplies to make it more fun. Her new fake rat Mark, the yarn Viking hat from another cancer friend and her festive Valentine balloon. When we got to the ER she had the rat in her pocket which scared the nurse. Audrey was very proud of that and laughed very hard.
We were in for most of the week but we had a very important event coming up that we knew we had to attend because Audrey had been looking forward to it for months. The annual Children’s Cancer Network fashion show. We had been positioning it all week that if we were still inpatient we were going to need a temporary pass to attend as sometimes you just have to live life. The good news is we were discharged on Friday and were able to attend. Cole and Audrey were both in the show and it was a wonderful event. We were so blessed to be a part of something so great.
The next day we had our last round of this cycle of chemo which also means the last scheduled inpatient chemo that we will have to get. Audrey has started to enjoy scaring people and decided she needed to step up her game a little. We borrowed a mask from our friends in POTC and Audrey and Child life Tracey went around the floor scaring staff. Turns out some people are terrified of clowns. Audrey would laugh really hard and tell them don’t be scared it’s just me. Audrey decided she was tired of being in the hospital so when her chemo and blood had run she was ready to go home at 2 AM in the morning so we left.
This would be another short stay at homeand on leap day we were back in the hospital. The really strong chemo she got had caused her counts to crash and she was burning through platelets and red blood cells like crazy. On top of that her white cells were completely gone and needed some time to regenerate. Of course everything is better when you are transfused with Unicorn blood. This time she was taking a long time to recover and another event that Audrey had been looking forward to for a while was coming up. So we started working with our doctors to make sure we could get a short pass to leave attend the event and come back. This event is called Respect Bald. It is a fund raiser that Joe Maddon from the Chicago Cubs organizes every year. The players and fans donate money and get their heads shaved. Audrey and Cole shared shaving Joe’s head and other players throughout the event. After we got done the Cubs had a suite waiting for us and the other children cancer families that were helping at the event. Along the way Audrey met her new best friend Clark the cub. He is the Cubs mascot and Audrey fell in love with this guy. They smile on her face and the joy she showed every time she looked at him and hugged him was awesome. Definitely what she needed in this dark time of being hospital bond. I was very tired as I had spent the night before with Audrey and fell asleep during the game only to wake up to a foul ball being hit into the suite next to us. NEVER sleep at a baseball game. During the game Clark came back to visit with Audrey and she just loved on him the whole time. She hugged him, held hands with him and even took selfies together. It was great to see her smiling and outside of our one room suite in Mesa.
We had 6 hours of great play time but we knew we had to be back at the hospital by 4 and we were. It was a few more days before we finally got the counts we were looking for and got to go home. The day before we left we also found that a special guest was stopping by for a visit. Charlie Puth a young singer and song writer stopped by and said hello to all the kids in the forever young zone. Audrey didn’t know who is was but it was fun to have something to do that day. We finally got discharged but knew we had to be back Thursday for her MRI. We were very nervous about this MRI because it was our first one since we got back from radiation and felt it was really going to set the tone for treatment going forward. If we got a clean scan it would mean we continue course and finish the current chemo plan. If we didn’t see favorable results however we were going to pause reevaluate and change course. Let’s just say it was a very long day of waiting. Our awesome doctor called that evening to give us the good news. No visible cancer! This doesn’t mean she is out of the woods yet but it does mean the treatment is working and for the first time in 10 months she has a better chance of beating this first round of cancer. These were amazing words and something that would trigger some deep thought. Of course I was overjoyed to hear that we are winning but I have been doing the best I can for the last 10 months to mentally prepare myself to bury my daughter at any moment. I have been preparing for the day when the doctor tells us worse news if that’s possible. It turns out it’s not an easy shift in thinking it takes some time to understand. Now we are starting to not worry about her leaving soon but starting to think about the long term ramifications to the choices we have been forced to make. Nothing with cancer comes without a cost. Turns out the chemo to treat cancer can cause cancer especially at the dosages and the number of times Audrey has gotten them. Then the radiation will cause some level of brain damage over time as well as growth issues in her back. All things that we will work through but a new mindset none the less. I had a realization one day that we now have a kid with special needs. It seems obvious now but in all the craziness of just trying to keep her alive and rid her body of cancer I hadn’t thought of that.
Since the MRI was good we have continued the plan to slowly scale back the intensity level of chemo that she has been getting with the most intense being completed. She is still getting 3 different chemo’s but we have switched out the most intense with to a new one. The new one doesn’t seem to hit her blood counts as hard but seems to make her very nauseous. The best part is she only gets it every three weeks which has led to much less time in the hospital. Her awesome medical team has also worked out a way to get chemo that is normally given inpatient to be given outpatient with IV fluids and home health care. This means we spend a day getting chemo then go home with an IV. The next day the nurse comes and takes out the needle and verifies everything is good. We really like being at home. On the 10th day after chemo we had a clinic appointment but Audrey was looking a little run down. She also had a special friend make a surprise trip to the hospital to see her. It turned out Clark the Cub wanted to see her one last time before heading back to Chicago. He hid around the corner and her smile lit up the world when she came around the corner and saw him. A very special video. Clark posted that to the Cubsfacebook page and it got over 292,000 views, over 2,700 shares and more than 400 comments of encouragement. It was a very special moment. Audrey’s counts were low and she had a low grade fever so they admitted us for the evening to get reds and platelets as well as observe her. The next day was the planned Easter egg hunt. A new friend Audrey had made named Ashton was in getting his very last chemo treatment so he hid the eggs for all the little kids. With the visit from Clark, the racing around the unit with Ashton and the Easter egg hunt this was a very good visit. Being home for a couple of weeks before coming back probably helped a bit as well.
Easter would mark a huge milestone in our treatment. It is the first holiday minor or major we have been home for since June 16th when the journey began. We spent the day just playing around in the morning. Audrey and Cole went through their baskets then were ready for an Easter egg hunt out front as we do every year. Audrey was good for a couple of rounds but quickly ran out of gas. Cole however played for many rounds and is getting much better at finding the eggs.
Since then we have just been spending as much time at home and together as possible. We had 3 solid weeks at home before getting admitted yesterday after going to the clinic 10 days after chemo and again needing platelets and red blood cells at about 5 she spiked a fever and they admitted us for observation. Hopefully a short stay. The good news is it gave me the time to sit down and catch everyone up. We are blessed every day to spend each day with Audrey and finally have a better chance of tomorrow. We will keep praying and keep taking it day by day. We know there are challenges yet to be faced but we also know that this little girl will not settle for anything but greatness.
It’s been a whirlwind of a year and at the same time it’s seemed like an eternity and almost impossible at times. Spring has been a much better time for us as a family. Since the last post in April we have had no inpatient stays. Audrey has fought hard ending up in the ER a few times but the doctors felt it would be better to be at home than inpatient given her counts at the time. Since we haven’t been spending as much time in the hospital and Audrey has been feeling better this has given us time to play, live and enjoy. We still have our hard moments but they are fewer and farther between.
In April Audrey had been asking to go to the park to play for months. She so badly just wants to be a normal kid. But her counts being low and the germs at the playground weren’t worth risking it. Well now that she has been doing better we have been venturing out a bit more. She got a nice hour of play in before she got tired and was ready to go. It was the most we had seen her active in a long time. After the park she decided she wanted watermelon ice cream. After scratching our heads for a few minutes and Melissa searching the internet we found a place that makes ice cream with liquid nitrogen called Sub Zero and watermelon was one of the flavors. The really nice staff made our ice cream then showed us a trick they can do with a water picture and some cool liquid nitrogen. Cole and Audrey had fun playing in the mist and Audrey said it felt funny on her head.
When we aren’t out and about we have just been enjoying watching Audrey’s personality come back a bit more every day. She still has her hard days when getting treatment or having to be at the hospital for one test or another but her fire inside continues to burn brighter. We even made it out for a little mini-golf and she hung in pretty well. She was wiped when we got done but it looked like she had fun.
It was then time for our trip back to Houston for a checkup with the radiation oncologist. Because we continue to be a team of 4 fighting the battle we knew we had to take Cole even though he would miss a few days of school. The flight down went well and the flight staff was very good to us and loved on the kids. Audrey of course ate them up sporting her Princess Sofia crowned head phones. While we waited for our appointment the kids got to play in the playroom waiting area where we spent every week day for 2 months during our daily radiation. They really enjoyed being back and visiting with all of our new Houston friends. The checkup went well and the doctor helped point out things we will need to watch for going forward such as growth and IQ issues due to the amount of cranial and spinal radiation she received. Something she pointed out that was in our favor is the tumor started in the lower back not the brain so the extra powerful burst that were done the last week were not to the brain. Since we were staying in a hotel and had the afternoon free I took the kids over to the Houston Science Museum. Somewhere I wanted to go while we were there but it just never happened. It you ever have the chance to go stop in it’s an amazing place. That evening we got a chance to see one of the families that we had met while in the Ronald McDonald house and have dinner with them. It was great to visit with them as well.
The next day it was time to fly out but not beforestopping and having lunch at our favorite spot in Houston called Little Matt’s. Jim Reid is the owner and his son has fought cancer a number of times. They truly understand the toll it can take on the family. When we walked in the door Jim happened to be there to meet us. He introduced himself as the last time we were there we had met his manager not Jim. After introducing himself he told us that he was excited for us to come in and he was taking care of anything we wanted today. He gave us drink cups and even went to the register and got quarters for the kids to play games. We were meeting some close friends we had met that were still staying at the Ronald McDonald house for lunch. While we were eating Jim came out and talked with us a bit and just listened and encouraged. As we have learned this journey really distills our character and in Jim it shines through. The trip home was uneventful minus the wonderful flight staff that again loved on the kids bring back first class snacks and cookies for them.
The rest of May went really well. Still getting chemo treatments but still finding more time to play. Audrey had been begging to go swimming and it was finally getting warm enough and our nice neighbors as always are happy to accommodate her anytime. We also started planning our first camping trip of the season and our first chance to get away that wasn’t medical related since late last summer. My friend and I took our kids with us on the scouting trip to find the perfect place. While we were up there we went on a short hike to show him Potato Lake a place we had found on our last trip. Being a dad I didn’t think to bring everything that was need such as a hat. Put what I lack in planning I generally make up for in resourcefulness. It was the spare pants to the rescue. She said she liked it because it was like she had hair.
The last week of May we finally received our last round of one of the more intense chemo combinations. We are finally in the home stretch! That was good because we had a lot planned for the memorial weekend and the week following. We started the weekend off with a few friends over for dinner on Friday, then we went over to some friends to swim on Saturday. Sunday we had Gramps over for lunch and I got to go watch some drone racing. On Memorial Day Javier from the Houston Astro’s set us up with Tickets to the Diamondbacks Astro’s game and even got us on the field for batting practice. We also hunted down Baxter the Diamondbacks mascot to get a picture so we could send it to Audrey’s buddy Clark the cub. They still continue to send emails and videos back and forth. We had such a great time at the game.
After the game we came home and loaded up the trailer as much as we could and got set to go camping. The next morning we got up really early and finished our preparations. There was only one unusual hurdle we had to get over before heading out of town. We had an 8 AM doctors visit at the hospital to make sure the chemo from the week before hadn’t dropped her counts to much. So we loaded up with the camper in tow and stopped by the hospital. We got the green light from our doctors and we headed straight from the hospital up to the rim. We weren’t sure exactly where we were going to camp but we knew it had to be high in elevation as the weekend weather was calling for 118 in the valley. We found a nice little spot near the rim and settled in for 5 days. On Saturday we packed up and started heading home. The camper worked perfect and we really enjoyed our time up north but were very much ready to be home.
We had to head down on Saturday because Sunday was cancer survivor day and Cardon Childern’s had rented out Amazing Jake’s and had a bunch of special guest attending. We got there right at 8 when they opened and they had all the video games on free play and all the rides running for the kids. We played games, drove go-karts and bumper cars and rode a few rides. Audrey was all over the place getting loved on from her Cardon family. They enjoyed having their families get a chance to meet her. And of course there were the mascots. Audrey got to meet Sparky from ASU, Big Red from the Cardinals and Howler from the Coyotes. After meeting all of them she danced the rest of time until she looked up and told Melissa she was too tired to dance anymore. Melissa picked her up and she just cuddled in for a nap. It was such a great event and truly awesome to see all the families that are fighting harder than anything they have ever done get to just smile and enjoy the morning.
This week Audrey started her first of 2 more week long chemo’s. It was a long week for her and Melissa as they spent a lot of time at the hospital. But since her spirits and energy is up they had a lot of fun as well. She also started attending preschool at the hospital 2 times a week one on one with a teacher for the summer. She is super excited to get to go to school and I think it’s because it makes her feel more like the other kids. The picture in the pink cape is while we were waiting for her teacher on the first day. I think she was excited.
Tomorrow will mark the one year mark since Audrey was diagnosed with stage 4 rhabdomyosarcoma in her nervous system. It’s hard to believe she has been fighting this hard this long as she is still as sweet and tenacious as ever. While we were at the survivor party I took this picture. It might be my favorite so far. It really sums up her character. When I looked up the word survivor one of the definitions is “
Finding our new normal(Before the bad news)
As with the last few post its been a while since I have sat down to record our crazy world. Since then there have been many amazing milestones that Audrey has met with such great strength. She really is one inspiring little creature.
Fathers day was the first of many good days to come. The kids offered to help me with a project I have been wanting to work on for a while. I wanted to build a delta wing made out of dollar tree foam and hot glued together that I could fly around. We worked many hours on Saturday and Sunday to cut out and build our model. It came out pretty well and flew well too. It almost felt like life was getting back to normal what ever that was. We also made it out for a little top golf which Audrey and Cole very much enjoyed.
The summer was pretty good all together. With the treatments lessening Audrey continued to get stronger. Our good moments were better and longer as the hot days progressed. One of the limitations is Audrey can’t swim in a public pool or a open body of water with the port in her chest. Since we have some great neighbors with an amazing pool we spent a few amazing family moments last summer and this summer enjoying the cooling waters and family time together.
Finally the day had come. An amazing day. Audrey had fought her butt off in chemotherapy for 389 days and July 11th 2016 was her day to win. She had completed her 54 week chemo plan in 58 weeks which was much better than expected. When you are fighting cancer the closer you can stay to the project protocol length the better chance you have of beating it and so far she is showing she will. Before the last day of chemo came we were asked by the PR department of Banner if we would share our special day. Of course we said yes since everyday of this battle has been about hope and awareness against pediatric cancer. We said in the very beginning no matter what the out come we would use our experience for these reasons. We were told there was an interest in the story but didn’t know how much until that day came. When we showed up to the Pediatric Outpatients Treatment Center that day there were a number of camera men already setup. The amazing child life team had decorated the room in celebration of the day. As always Audrey was on point and winning everyone over from the moment they met her. Here are a few of the links from the Phoenix news channels.
After that the next big step was the MRI in August. The scan in April was clean but there had been a number of months since them and a decrease in the intensity of the chemo that she was receiving. Now that we are gun shy we expect every bit of news to be bad as this is what we have been come to expect over the last year. Of course you can’t always think of the future and you have to continue to enjoy every borrowed day. So in between the last chemo treatment and the scan we squeezed in one more camping trip before it was back to school for cool and camped for 4 days up at Lynx lake in Prescott. Again we pretended that life was normal and just stopped to smell the roses and live life as a family. Many memories were made that will last a life time.
The time finally came to have the scan. At this point we are pretty desensitized to Audrey getting a 4 hour scan and of course she takes it like a champ. The hardest part is waiting for the news. As I have mentioned before we are more used to bad news than good but always holding hope for the good. We had an appointment the next day with Dr. Ruzika her neurosurgeon to hear his read after all he was the one that delivered the devastating news to start with. When he walked room he had a huge smile on his face and said it couldn’t look any better. In fact it looked better than before the surgery as her syrinx was gone and the tethering had been resolved as well. He did his assessment was very pleased.
It seems life will never be normal and Audrey will continue to touch everyone that she encounters more deeply than we can ever understand. As I posted in the spring Audrey was able to be apart of an amazing event called Respect Bald put on my Joe Maddon the General Manger of the Cubs. During that time she met and stole the heart of Clark the Cub and the team. I had expressed to Clark that we would like to attend a game to see him and team in September if that was possible. A few days later I received an email I would have to read a few times to believe. Clark had invited Audrey to not just come out to the game but to accept the honor of throwing out the first pitch on a day dedicated to raising awareness to pediatric cancer. The day was very special for us in ways that I don’t know I will ever be able to express. The trip started off with us arriving to our hotel room with treats and gifts for the cubs. The next day there was a car waiting for us at the hotel to take our family to the game. We arrived at the VIP entrance to be met by Clark the Cub and our other team friends. As soon as she saw him she ran to meet him. They then held hands all the way through the park on the way to the field with smiles on their faces. Next she got the chance to sit in the dugout with Clark and meet a number of the players and see Joe Maddon again. Following that she got the chance to open the game and show those boys how to pitch. Clark caught the ball and ran to give her the biggest hug. After the pitch Clark tried to hand her the ball as a keeps sake. Audrey told him selflessly that she had already got a ball today and this one was his. We later found out that this ball is sitting on his desk in a display box to always remember this special day. Following the pitch we got to watch a Cub’s victory over the Giant’s were we got to witness one of the purest moments in sports. The sold out stadium singing “Go Cub’s Go”. I have never in my life seen more love of a sport displayed in any event I have ever attended. Since this was Labor day weekend we chose to stay a few days and enjoy the city. The next day we rode the train out to China town and had lunch at a historic dim-sum restaurant called Won Kow. Apparently Al Capon used to eat at this place. After eating there I could see why. Next Cole wanted to see the Willis Tower(Sear Tower). Because it was Labor day weekend the line was stupid long and when we got to the tower they said it would take 3 hours. We chose to spend this time that day touring the city on a double decker bus learning more about the city. The next day we returned to the tower with very little time. It took 2 hours to get to the observation deck and we only had minutes to take a few pictures before heading to the airport.
After that the day to day life returned and we had assumed we were done with Hospital stays. It turned out life would throw us another curve ball as we hadn’t seen enough. Audrey had been showing signs of a UTI for weeks and without fail popped a fever. Since the port was still in we had to go the Emergency Room for one last time. Of course the next day was an event we had been wanting to attend since we missed it last year. Children’s Cancer Network was holding a fort building event that we really wanted to attend. That night we were admitted into the hospital for observation but the next morning we got a surprise that we were going to get to make it to the event. I had only slept a few hours but as with everything else we refused to be defeated and were discharged just in time to make the event. Since I hadn’t slept much we called in a ringer. Our family friend Randy Blunt is always there to support and again stepped up for a great event. Him and his son Tyler came to help us make an amazing cardboard fort.
The next big day we have been waiting for is to get the port removed. This will allow Audrey to function as a normal girl, swim in a public pool and start to attend Preschool. It also means that when Audrey gets a fever we can treat her like every other kid and an ER trip is no longer required. The procedure was very routine and went perfect. She went back for 45 minutes and came out of anesthesia like she had just taken a short nap. Within about 30 minutes she said she was ready to go up to the 3rd floor and see what project was going on. The ladies upstairs couldn’t even tell she had just had a surgery.
Since then we have just been recovering and enjoying the time outside of treatment. We have even had a chance lately to enjoy some time just making memories. This a few weeks ago was fall break for Cole so we decide to get out for a few days. We decided to give Lake Roosevelt a try. The weather was amazing and we just got to spend some time together without thinking about what was still needed. It was so fun to watch Cole with Audrey helping her out into the lake when she wanted to go. Or helping her with her fishing pole when she needed it. We just spent time relaxing and enjoying our company. One of Audrey’s wants in life was catch a fish and eat it. We had the chance to catch about 10 Blue Gill so we grilled them up and ate them. I over cooked them so they didn’t come out great but one more thing she can cross off the list. The weekend was memorable and will not be forgotten.
As we adjust to life after treatment we are trying to process what it means to be us individually again. What it is to be a family of four again and starting to figure out how to start working our way back into the world. It’s easy to take a trip and peak out a bit into the world and feel normal but when we come home we remember that it isn’t the old normal we return to. It’s the new one. It’s kind of like moving into a new house. You like it but it’s not home. Before you know it you can’t remember the old house. I think that is what it will be like when we get there. We have a number of fun trips coming up over the next 6 months that we will continue to build memories. I have learned it doesn’t matter how much money you have, how big your house is and the car you drive. If I am lucky enough in life to become an old man (some might say I am already) I hope I won’t be looking back on the stuff but the memories that we made along the journey. I hope this year of struggle will help to make us better people seeing live from a new perspective in a new normal.
I was working on this post the night before her last routine scan on November 1st. Unfortunately our fight with Rhabdomyosarcoma is not over. More in the next post…
Rhabdomyosarcoma like all cancers is tough but it is proving to be tougher that we thought. As said in many of the other post we have had clean MRI scans since April. All of us including the doctors were pretty optimistic that we had it beat. One November 1st Audrey went in for her 3 month after treatment follow up MRI. We were shocked 2 weeks ago when the oncologist called to tell us it was back. The cancer had returned in one of the sites that it had originally spread to in the upper spinal cord. T3, T4 and T5 area. This area had shown to be more persistent than any of the other areas during the first treatment as well. It was the last to go away in the scans but had shown it was gone in 2 scans. Of course we felt like we had been hit by a truck again. A sucker punch in the gut from good old cancer! For 3 or 4 days we couldn’t eat or sleep just trying to understand it all and figure out what we were going to do. We already had a routine follow up with our doctors in Houston so we reached out to them for additional help with the cooperation of our local oncologist. We left Saturday for Houston as we already had our flights booked not expecting to be coming out for this. We were all setup to meet with our radiation oncologist, a neurosurgeon and our Houston oncologist Dr. Harrison.
We had reached out to a few friends before heading to Houston to try and connect while there. One of our friends invited us to an event she was volunteering at. The event was to celebrate the birthday of a child lost to fighting cancer and raise awareness. We got to hang out and play a bit and meet some new friends. Then we stopped at a restaurant we saw while heading to the event that looked about our speed. It was called Skips farm in Cypress TX. It had a fun playground in the back and food from a food truck. It was a happy place for me hanging out and watching the kids play. I struggled a lot looking over at her and watching her enjoy life as I was still expecting the worst when we had our appointment on Monday.
Since we came in on Saturday we had Sunday as a free day to go explore. In the 2 months that we had been in Houston last year we never made it done to Galveston and we had heard good things about it so we headed down there to take our minds off of the upcoming days. We found a nice restaurant to have lunch in right on the water. Then we decided to go for a dolphin ride. Again a brief distraction for the mind and a fun ride where we found smiles and laughs. After the dolphin ride we asked some locals where to find the beach. The pointed us to Stuart Beach. The weather was cool and so was the water but the kids just need sand to play in. Audrey found a fork and a spoon that instantly became their beach toys and they began to dig and have fun. They made sand angels and even pretended to dig in the sand. After dusting off we made our way to the playground on the beach and the swang until dark.
That night I didn’t sleep much again anticipating what the next day might bring. First we met with the radiation oncologist and she said that is looks suspicious and that since Audrey just finished her radiation right at a year ago there isn’t much option to safely give radiation at this point and she hoped the neurosurgeon could offer some options. Next we met with our neurosurgeon that had been recommended to use here in Houston. He looked at the images and felt very strongly this is a tumor as we suspected. He said on the good side it looks like a very wimpy tumor and he could biopsy it and try to remove as much as possible expecting good results. We asked what that meant for the cancer treatment going forward and so he called our oncologist to come in so we could all meet and decide if we wanted to do surgery. We all agreed it was the best option so we could verify the cancer type and remove as much as possible. Our oncologist said there have been a few effective chemo treatments for a recurrence of Rhabdomyosarcoma and he is most likely going to recommend a 10 cycle treatment which is 3 weeks per cycle. The first week is 3 chemos, then 2 the following and 1 the last week. Then it starts back the following week with all 3. As we see it now the 5 year survival odds are pretty low for Rhabdomyosarcoma that has come back after receiving the 54 week 6 chemo treatment and radiation. He also wanted a PET scan to make sure the cancer hadn’t spread anywhere else in the body.
We had Tuesday and Wednesday off from medical stuff as the PET scan was scheduled for Thursday and if it went well the surgery would be on Friday. As soon as we found out we were staying for longer that expected Melissa had a great idea to look on AirBnB for a place to stay. She found us a nice little duplex not that far from the medical center that was almost half of what we had been paying for the hotel and gave us a more home like feel. So that meant Tuesday was moving day. We got up slowly at the hotel and got packed up and headed over to the new place. The rest of the day and the next we just hung out and enjoyed the down time and time together before the scan.
If you have read this blog you have figured out I am a worrier and the upcoming PET scan had me on edge. I was very hopeful the cancer had not spread and that the surgeon could remove most of the tumor and give us an advantage. The day of the scan finally came and it all went well then we just had to wait for the results. Cole and Audrey had been asking to go to the Space center so we decided to do that as a distraction while we waited for the news. Cole, Audrey and I had gone last year while in Houston but when we went there was the left overs of a hurricane passing over and it was causing very heavy rain so we weren’t able to enjoy it as much and they had added the space shuttle independence exhibit since we were there last. We only had 3 hours so we stopped at the shuttle first. As we got to the top I got the call from Melissa that the PET scan came back clean except for the area in the spinal cord and it was only lit up dimmly. This was great news and the first of any good news we had had in a week and some. That meant the surgery was on. After seeing the shuttle we went on the tram tour and saw mission control, the space equipment testing facility and the last Apollo rocket before heading back to the house.
Friday came and it was time for surgery. We had a scheduled 1:30PM surgery so we got everyone up early and made breakfast since she wouldn’t be able to eat all day. We were glad we did as the surgery got bumped because of an emergency that had come in and needed the OR that we had been scheduled for. Finally about 5:30PM they took her back. She hadn’t ate or drank anything for 12 hours and didn’t complain once. The surgery lasted about 3 hours and the surgeon came out to talk to us. He said unfortunately the tumor was really sticky to the spinal cord and he was only able to get about 50 to 60 percent of it. He said he took the big parts he could then just spent the rest of the time scrapping and picking at it where he could to remove as much tissue as possible before closing her back up. The good news is she was stable and waking up and the getting in and out went perfect. I spent the night that night. She was in a good deal of pain and slowly weaning off the surgical pain medicine but doing well.
The next morning we took it pretty easy and she just watched shows on her tablet most of the day and got checked out by doctors. They all said she looked great. About noon she decided she wanted to check out the playroom so she got up and we walked to it. She was showing signs of pain in her back but wasn’t complaining. We didn’t play for long as she got tired quickly but it was good to see her up and walking. That afternoon Melissa and her took a good nap and it was a good thing they did as Audrey had a special visitor. Her friend Clark had reached out to one of his buddies and ask him to make a stop by the hospital for him. So that afternoon Orbit from the Houston Astro’s stopped by to give her a surprise visit and a welcome distraction to the day. They hung out in the room for a while joking and having fun. Then when it was time to go Audrey decided she wanted to walk him out. At MD Anderson it’s a long way from the pediatrics floor to the front door at main but we figured lets see what she can do. She walked hand in hand with Orbit all the way there. We said our goodbyes and watched him leave them she walked all the way back. Not bad for a girl who had an operation less than 24 hours before.
Sunday was spent hanging around the hospital and just enjoying another day together hanging at the hospital and healing. Of course Audrey found her way into many more peoples hearts today. From the nice lady running the shuttle on the sky bridge to hanging out with her nurses and painting their finger nails. There have been many tears and there are certainly many more to come but we choose to smile more and make happy memories no matter what the future might bring and the scary predictions we are given. The only thing in control is God and I have to give my struggles to him every second of every minute as fear and doubt try to sneak in. She is strong and determined and so must we be. We will fight until we win or run out of options but along the way we will live.
Today is Audrey’s birthday. This is a hard fought 5th birthday. We sit at the early stages of the second round hoping for 6th and beyond. Happy Birthday to the strongest human I know! I love this little girl and she has made me better and stronger than I ever thought I could be.
Well we left off in the last post with Audrey recovering from surgery on her birthday at the Hospital in Houston. She got discharged around noon and we went home to celebrate as best we could in our apartment we had rented in Houston. While Audrey and I spent the night in the hospital Cole and Melissa had been hard at work getting the place ready for Audrey to come home. They blew up and tied 84 balloons and filled a closet with them for her to dig through and find a little gift we had got her. They also hung streamers and other decorations around the apartment to surprise her. She really enjoyed it when we got home. After that it was all about healing. She was in quite a bit of pain but wouldn’t say it. She was walking around all hunched over and we would ask her if she hurt and she would in a weak voice say she was good. Each day got better and we just focused on healing and hanging out around the house for the next couple of days.
Thursday came and we saw our neurosurgeon and he said everything was looking great and we were cleared to go home. We saw a few people on the way out and said our good byes excited to start getting ready to head home. We spent the last evening with our friends Katie and Javier at our favorite place Little Matt’s. It was a good way to end our trip. The next morning we got up really early to finish packing and get to the airport by 6:30 so we had to leave at 5:30. Everything went well and we made it hope safe and sound.
We spent the weekend resting and getting caught up a bit around the house. We were exhausted but still had things we needed to get done before we start back with our local doctors on Monday. Monday came and the pathology hadn’t come back yet which caused us to cancel the appointment and reschedule for Tuesday. I did my job and start working the Houston team to get results and by that afternoon we had final confirmation the tumor is the same ERMS tumor that we had fought before. Now we could sign off on our treatment plan and get the port put back in and start chemo. With the short week we had a small amount of time to get chemo scheduled but our medical team did a great job of pushing through the insurance approvals and getting us all setup.
This morning we arrived at the Hospital at 6:30 for our check in to get the port put in and start chemo. Since we are already in for the port and we are doing 2 new chemo’s we all thought it best to spend in the night inpatient. The surgery went well and last about an hour. We had an Anesthesiologist that we haven’t had before and Audrey didn’t wake up as quickly from his mix of meds. Will need to get the records and see what he used different this time. We finally got to our inpatient room around noon and we have just been hanging out getting hydration and then chemo. We finished chemo about 30 minutes ago and have just started our 12 hour post hydration and we are expecting to be released sometime tomorrow morning.
When I started writing this post I looked back on my post from last year. As I wrote that post on the day before Thanksgiving last year I was sitting in this same spot. We were getting chemo and we were very unsure of her future. Last year I was just thankful for having a family of 4 and knowing if it would ever be 4 again. Well God saw it to give us another one and we will fight for the next and the next after that. What we have learned along the journey though is we have to take each moment and create lasting memories and not worry about whether the next will come but that we enjoy today.
I will end this post like I did last year.
Don’t worry about the perfect meal or the perfect party. Don’t worry about getting the perfect gift or decorating the perfect tree. Just make perfect joyful memories because that is what truly matters. Only God knows the beginning and the end and the rest of us just have to enjoy the time we are given in every moment.
Happy Thanksgiving! Eat, drink and have fun!
Just a quick note that we have started a new project on youtube. I have been wanting to start a channel for Audrey and I have been thinking about doing this for 6 months or more. Plus now that Cole is doing home school he has really been wanting to start a youtube project. So we put the two together and started Ask Audrey. We will try and get content added each week so like and subscribe and share with everyone. Make sure to comment on the video in youtube and add questions.
Audrey’s first 2 chemo’s have gone great and she has one more this week to finish cycle one. We will then take a break over Christmas and her next cycle will start Dec. 29th.
Wow 2016 is coming to an end and it is officially the worst year of my life. Glad to see it go and hoping for a better 2017 even though it’s coming in under tough circumstances. But even saying that we have 19 days of memories left to make. Never forget to finish strong. As I posted in the other post we have started a project called Ask Audrey and we have posted our second episode today. https://www.youtube.com/watch?v=ZVjCf2B6K-Y&t=17s
Audrey has finished her first cycle of 33 to 40 cycles of chemo. She handled it well and hope the rest go this well and that the cancer is responding to the treatment. We have our scan scheduled for Jan. 16th to see how it’s working. She was supposed to start the next cycle next week but we chose to pause and enjoy Christmas. We are working on creating some great memories before the end of the year and will have some great moments to share.
Well I can’t believe I haven’t posted since Christmas. Things have been busy and sometimes it’s just so hard to sit down and think of all the stuff that has been going on these last few months. So here I go and trying to get everyone caught up. When things were looking up last year and we were expecting to be off treatment for Christmas Melissa and I decided we spent last year in the hospital for Christmas that this year we were going somewhere awesome. I spent months looking at different islands in the Caribbean trying to find the right mix of white sand beach’s with warm water with a house on the beach. Finally we found a house on the island of Roatan just north of mainland Honduras. We had 11 days planned and paid for long before we found out the cancer was back. We really never thought it would stay away forever but had hoped our break would be longer. We decided very early on that we still wanted to make this trip happen so we worked with the doctors to schedule around it and we even paused chemo treatment and hoped it would be OK. We needed to live today and worry about tomorrow tomorrow. So the day finally came and we got up super early as our flight was at 6:40 AM. We flew from Phoenix to Dallas then Dallas direct to Roatan. When we left home it was very chilly and windy when we landed in Roatan it was hot and humid just like we had hoped. We quickly got through customs and were on our way to the beach house after a quick stop at the local market to load up on some groceries. We were very hungry when we arrived so we put everything in the house and headed to the local bar next door called Beachers. While we ate Cole and Audrey could hardly wait to dig into the sand and Audrey had been talking for weeks about burying her brother. In true Audrey fashion while they were digging in the sand a lady walked by and Audrey asked her to help her bury Cole. She said sure and they became instant friends and set off to bury Cole. We just sat there and enjoyed the sunset. That evening that same bar was having live music so headed back to check it out. While hanging out and listening to this great music and talking to Audrey’s new best friend Foxy we met a few other kids that had just arrived that day as well. Aden and Ella. Their family had rented a house right across from ours and the kids all ended up being good friends during the visit. Their parents and us got along very good as well.
The next day was spent on the beach and it was a perfect day. Sunny and warm and the water was beautiful. We swam all day and the kids hardly got out of the water. We found the snorkeling down at the end of the beach was amazing and you could swim right out to part of the barrier reef. Cole and I enjoyed snorkeling and looking at the coral and fish. Cole and I created a video of our first day that can be found on YouTube at https://www.youtube.com/watch?v=Y12CUGTJ-fA&t=94s
The next few days the weather was pretty good but had rain off and on. It would rain like crazy and then be super sunny for a while. We just hung around the house and got to know where everything was on the beach. One morning we went out to find some breakfast and got rained on a bit on the way but nothing bad. We sat down and ate then continued on our walk past the restaurant. When we got out away from everything the sky let loose and we quickly learned to watch the sky and listen to the rain as it got closer beating on the palm trees. It was cold at first but while walking back the rain went away the sun came out and we were all warmed up before we got back to the house. In the picture you can barely see the house through the trees above the beach chairs.
After a few days of playing around the new friends we had made and our family decided it was time to go zipline. We hired a taxi and they picked all of us up in one van and we headed out. Since it is the rainy season you really just plan a time and hope it doesn’t rain. We got really lucky and that morning it was perfect. Our driver took us to one of the best places on the island and a place he knew would have less cruise ship people. It was a great course with 16 lines. They pick you up in an old truck at the bottom of the hill and you take a sketchy ride most of the way up the hill them climb some stairs to the top. Once up there the view is amazing and it’s time to get our instructions on how it all works. The first line Cole decided he was going with Melissa as he figured out how it felt. Audrey also decided to ride with me. Melissa and Cole did great then after that Cole did the rest of the lines himself. The guides were amazing and helped make the day very enjoyable. Occasionally they would add some antics to keep things fresh. Like telling you to slow down when you couldn’t or running away from you when you are expecting them to stop you not knowing that line had an auto braking system. After finishing up our ride we stopped by and saw some local monkeys and a big bird. We had a great time with our new friends and they did great on the zipline as well. Cole and I also worked on a video for this day as well that can be found on YouTube at https://www.youtube.com/watch?v=RoImU0XydDM&t=57s
After that we decided the next trip should be a trip to Little French Key which is a private island that cruise ship people go to experience the beach. We chose a day that only had one boat so pretty much had the island to ourselves. The only bad thing is it was a very rainy day but we planned on being in the water most of the time so no big deal. It took about an hour to get there and along the way Cole started getting car sick. We got him over to the window and he stuck his head out while we found somewhere to pull over. We got him some Dramamine and put him up front between the driver and one of the other family. They seemed like they had good conversation the rest of the ride and he did fine. Once we got to the island area we took a boat over to the island. We met our guide once there that walked us around and showed us all the amazing animals they have there. They have moneys, pumas, birds and even a tiger. After that we headed to the gazebo area and got our food ordered for lunch. While we were waiting for lunch the kids went over and started jumping on the jump platform. I was super proud of Cole for doing it. He really came out of his shell a bit on this trip of trying new stuff that he would usually be scared of. I think Aden and Ella helped him with this a bit. The day was a lot of fun. We snorkeled around the bay and even went out for a kayak with the kids. Then it was time for our guided snorkeling trip. Audrey had been a bit fussy that day so instead of try and get her to come along Melissa decided to stay back with her and just hangout. Of course Audrey’s charisma and the staff with no one around see soon had them all hanging with her. They decided that she needed a Pina Colada and that she needed to help make it. They all enjoyed her company very much and everyone wanted to get in the picture at the end. While Audrey and Melissa were taking care of the bar the rest of us were out snorkeling on the barrier reef. It was a bit overcast but the water was perfectly clear and the reef and fish were amazing. I think they forgot to tell us that there might be jellyfish. We found out about half way through the trip. It hurt but wasn’t horrible. Just small stingy burning feeling. Cole decided he had enough and got out and the rest of us finished the snorkel. Right towards the end our guide took one of the others GoPro and free dived about 80 feet. It was amazing to watch and the fact I could see him the whole way was pretty cool also. After that Cole and I snorkeled around a bit more around the bay then it was time to head home. It was an amazing day. Still working on getting the video from this day finished up but will post a quick update once we get it uploaded to YouTube.
We spent a few days hanging on the beach, swimming and soaking up the sun when it was out. Just enjoyed being with our new friends and in the Caribbean. We finally decided to get the dolphin encounter scheduled over at Anthony’s Key. We arranged for same taxi guy to pick us up as all our other trips. It was only the 4 of us this time and it made for a wild ride as the very long drive down to the houses at the beach was super steep and it had been raining. The driver drove as fast as he could bouncing all over the place and even had us sitting in the back so the weight would be over the tires. First run wasn’t fast enough so we backed up farther and ran faster. Getting thrown around the van we made it this time. The first hard spot was done but there was still another one up the road. The van started slowing down and you could hear the tires slipping. He said start jumping so we all started bouncing in rhythm. Every time we bounced we went a few feet. We slowly worked our way up the hill and we were off to see the dolphins. We arrived at Anthony’s Key and got checked in and waited for the water taxi to head to the island where they keep the dolphin. We only did the encounter where you stand in the water and get to pet them as we didn’t know how the kids where feel about swimming with them and we didn’t want to waste the money if they didn’t like them. As we waited we noticed a bunch of cats on the island and they were very friendly although we ended up all getting Hookworm parasites and I think it was from these cats. All the kids were petting them and they seemed nice. When it was time for the encounter they had our group enter the water in a line. One of the group didn’t listen very well and left space for the dolphin to shoot between us. As we got setup in the water the dolphin was checking us out and Melissa was at the end of the line. All of a sudden she started saying ouch something hurts and struggling in the water. The dolphin had come up from behind us and wanted to see what her leg taste like. Guess he took a little nibble. He was an honorary dolphin. There was another young male dolphin next to us and the two of them kept fighting right out in front of us. Finally the trainer had to se
nd that other male dolphin away and get a female in so ours would calm down. He showed us a number of tricks and we got to pet him a number of times. It was really cool to see the power and speed they have up close. The kids enjoyed the experience and we got some really good pictures.
They day before when we had returned from French Key we all noticed that there was no water at the house and the owners had been trying to get it back working. They finally decided it was going to be a number of days before they could get it back on so they rented us a room at a hotel about a 1/4 mile up the beach where we ended up spending Christmas Eve and Christmas night as the water wouldn’t be back on until Monday or Tuesday. We figured we could spend the nights at the hotel for showers and bathrooms at night and at the house and beach during the day. I took a lot of trips down to the ocean bucketing water up to the toilets to flush during the day. On Monday they at least got us working off the cistern under the house so we could flush the toilets but still had to shower at the hotel. Nothing like third world problems. We didn’t let it keep us down though and finished out our last few days just hanging around the beach. Cole and I even went out on a boat one day and each caught a fish. Cole caught a small black fin tuna and I caught a small Albacore. Our friends we had met took them home and cooked them up for us. We had that as an appetizer before heading out to dinner. It was finally time to home. We really enjoyed our time but we were ready to be home. Got the house packed up and said goodbye to all our new friends and headed to the airport. The flight home went well from Roatan to Miami then it was a straight 5 hour flight to Phoenix. We got in late and finally home about 1 AM.
The next day we had to be at the doctor’s office to get counts drawn so we could get chemo the following day. We had a ton of fun but it was time to pick the fight back up where we left off. We got chemo on Friday then headed home on fluids and got the IV at home the next day for New Year’s Eve. I was so tired I was in bed by 9 PM on New Year’s Eve feeling like an old man because all the fireworks were waking me up. Life is hard sometimes. Over the next few weeks Audrey finished up this second cycle of chemo and it was time for an MRI to see what the cancer was up to. We haven’t had a look since her birthday on Nov. 14th. I was very nervous for the scan as no one seemed to know when we started this chemo if it would do anything at all. She had her 3.5 hour scan and we finally got the call. The oncologist had looked had read the report and went straight over to review with the radiologist. The original report stated brain and upper back showed no visible cancer. There was some concern about the lumber area where the cancer had originally started but the second radiologist that looked at it thought it just looked like post operation scare tissue or blood vessels that were getting highlighted from the contrast and felt there was no need for concern. Either way the brain and new tumor site had cleared up and they could not confirm cancer in the lower back so it was still a victory for now. I was just hoping the chemo had shown a little progress and the cancer hadn’t spread so much better than expected. A few weeks later we got the call from MD Anderson that our oncologist down there and the surgeon that had removed the tumor felt the lower back was not cancer either. For now we are in the clear. It doesn’t mean the cancer is gone but at least it’s not visible and not growing. It was explained to us that because this chemo is not as strong as the first time we tried this would most likely not result in a cure but would at buy us some time. Talking to the oncologist from MD Anderson he said this chemo mix is pretty new and he just don’t know if it will help keep it away but let’s celebrate today and look forward to tomorrow for now. So far so good.
Since the scan Audrey has completed her 3rd cycle of chemo and has now been in treatment for 67 weeks counting the first 58 and now 9 weeks of chemo every week not including the 2 weeks we paused chemo for Christmas. This Monday Audrey’s blood counts had gotten low and she got a UTI at the same time. Never a good mix and resulted in an extended stay at Hotel Cardon(Cardon Children’s Hospital). We are hoping to get out tomorrow which will be 5 days that we have been here. We are more than ready to be home and get back to being a family together. I know Cole has really missed having his baby sister at home. We have 3 more weeks of chemo and are hoping if all goes well and she stays healthy enough we will be leaving for our Make-A-Wish trip to Disney World in 3 weeks.
We continue to meet new families that have started their own cancer journeys lately and try to be a light for them and a sounding board as the experience veterans. These girls had a 10 PM parade around the floor then a dance party and took a silly picture. Not sure what the diapers were all about. We make sure to remind them to take a deep breath and then focus on making happy memories and to not dwell on what could be as none of us know what tomorrow will hold. Even though we have been doing this for about 20 months I still struggle on keeping focus on today and enjoying our time in the moment. It’s important to not let tomorrows worries steal today. I often get in a dark place thinking about how it will be impossible to deal with the final days. The other day I was driving home yelling at God. Why do we have to walk this journey? Why is she not better? Where are you? In my head I heard I am right here, I have always been right here. In that moment I calmed down and thought about that statement for a minute. I took stock in our lives. I just happen to work for a company that has been overly supportive and gives me freedom to work when I can and take care of the family when I need to. We also get great insurance from this company and a good paying job that lets us continue to pay our bills and escalating medical cost and supportive cost. We have neighbors that are like family and take care of anything we need if gone for extended times. There are countless other examples of how I see him around us. I still don’t understand this cancer stuff but I know when the time comes he will welcome her home with open arms. I hope that time is a long time off but I know he is there when it comes.
Live life today in the moment and don’t let tomorrow’s worries no matter how bad take away from today.
Alright we are 4 days away from our Make-A-Wish trip to Disney World! Can’t wait to get some good quality play time for a whole week. Meanwhile I am again writing from my overpriced studio apartment AKA our inpatient room at Cardon Children’s Hospital. Audrey knows how to do one thing really well and that is grow stuff in her bladder. Another UTI has brought on another fever and combine that with low white counts and we are again back in the hospital. The good news is she hasn’t felt that bad this time as we caught it early and her temp has just been hovering around the 100.4 F or 38 C fever point. Nothing like last time when we were spiking to 104. She has really enjoyed riding around and playing with her friends from child life. They are the wonderful ladies that have made it their carrier to help keep our kids happy when they are here. They can be such life savers for us on those long days of no sleep and tough decisions.
Since the last post we haven’t done much other than stay around the house and enjoy hanging out. But as peaceful as that sounds it has been pretty busy. It apparently is lambing season for the sheep. We had our first arrival of the season about two and a half weeks ago. Then on Feb. 12th while my parents were down for a visit one of our ewes (female sheep) was in distress while laboring. Luckily we noticed and were able to take action and help her out. Melissa grabbed and her and kept her still while I went to work figuring out how I was going to get him out. Luckily the first time we had a pregnant sheep I watched some YouTube videos on how to help a sheep in distress while delivering. Yes they really have them but beware it’s not pretty. I pushed him back in and grabbed his legs and pulled him out. He wasn’t moving but seemed to have some shallow breathing. Within a few minutes he was looking better but still not moving much. Then we saw two more hooves pop out and we helped that one out also. It was a baby girl and she was strong from the second she popped out. We named the boy Hank and the girl Tracy. Hank spent a few nights with us inside at night since we had to feed him every 4 hours the first day and it was cold out. He is finally outside sleeping with the rest of the sheep. Then this past Sunday night the 18th we had another mama sheep drop her 2 babies on the front porch. We knew she was to big to just have 2 and she kept laboring for many hours. Melissa and I took turns watching her all night and sometime in the early morning she past the last lamb but it was a still birth. She was so tired by then and so were we just from watching. Both lambs are doing well and Melissa and Cole named them Pearl and Franklin. Today we had our 6th baby lamb. Melissa’s dad Rich stopped by the house and said I think your sheep is having a baby. We looked out the front window and he was already starting to come out. So I did what every person does that sees a lamb being born out their front window and opened up Facebook and started a live feed for everyone to watch. It was fun to watch and share with everyone. You never know what you are going to see at our house.
It’s fun to watch and be a part of something so special as the beginning of life. It’s a reminder to us that life goes on. In some cases like the triplet it never really got going and in Hanks case he needed some help but he is now well on the way. Audrey falls somewhere in the middle. She has had a strong 5 years and God willing many more to come but she still needs a lot of help to get there and a little luck to beat this beast. There are days where I just want to be the woe is me type of person and sometimes it gets me and I dwell in my own self pity and cry a bit. Then I realize I need to pick myself up and get back in Audrey’s corner as she is doing all the hard work and we are there to merely help and advise. Next week is the rest in between rounds where we get to go be a family of 4. We get to make some more precious memories and long videos for you to all struggle through getting to the end because I made them too long. We get to watch Cole and his baby sister smile and laugh and play together at the “Happiest place on earth” and I get to try not to cry as I watch them have fun. It will be interesting to look back with Cole in 20 years and see what stands out the most to him from this trip. I am willing to bet it won’t have much to do with Disney.
Also here is a link to a quick video I made for Audrey’s YouTube channel Ask Audrey
You can subscribe on YouTube to Ask Audrey and it will update you when we add more. You can also add your email at the very bottom of this page and every time I post a new post it will email it to you.
Thanks for being a part of our journey and loving on my family! It’s time to breakout of this hospital and start preparing for a trip of a lifetime.
So as we get ready for our trip to Disney World tomorrow we go with heavy hearts. Audrey’s MRI came back Friday showing the cancer is spreading even though she is getting chemo. Our doctor sent the scan and read down to the doctor in Houston. I emailed and and he said he would look at the scan when he gets it next week and we will go from there. He said there aren’t currently any options though for clinical trials that he knows of that are worth moving the family to try but he will call around and see if he can find anything. If not it will just be making her comfortable and enjoying the time we have left.
Not sure how I process this info but it’s tearing me up. We choose not to tell Cole until we get back from the trip so he can enjoy as much as possible of this time together. I am working on getting my head wrapped around not being a sobbing depressed dad and get a mind set of enjoying everyday. I am sure once we get there the activities will take my mind off it a bit so looking forward to that distraction.
Just wanted to make a quick update for those following on this site. Please pray for peace and guidance as we most likely enter the sunset of our fight or that there is something out there that might work.
Well we had one heck of a time in Florida. We had to leave the house super early but got picked up in an amazing pink stretch hummer from our friends at Jet Limousine. Once to the airport everything went smooth and we got on our flight bound for Orlando. Once we arrived we had a car waiting for us at National car rental and they said just choose any car in the full size row. We picked the Charger and it was a fun car to drive. Shortly after that we arrived at Give Kids the World which is the resort that is for wish granting agencies to send their wishers for a Orlando experience. The ticket package you get is 3 days for Disney, 2 days for Universal Studios and 1 day at Sea World. We plan was to spend all 3 of our Disney days then decide from there. When we arrived our room wasn’t ready because they said they were making it extra sparkly. Best excuse I have heard yet for not being ready. We were hungry so we headed over to the dining hall and grabbed some lunch. It turns out that Boston Market, Papa John’s and Perkins are the sponsors for food. So we had some Boston Market for lunch before going to explore. They have a carousel open all day everyday so we started off by riding that. By that time our room was ready so we got checked in and headed off to our Villa. Cole gives a great tour you can watch on YouTube if interested. https://www.youtube.com/watch?v=rBpfcCwt8Ww
After getting settled the kids and I went and played a bit while Melissa got settled into our awesome villa. We rode the little ride they have and played in the arcade area. Then we played a round of miniature golf and discovered all the fun things that happened once you hit your ball in the hole. There were some good surprises. One of the holes was a cave and when you hit it in a thunder sound happened and strobes went off with some mist. After that we grabbed some dinner then headed over to the playground where they were having a sugar party and the largest game of Candy Land ever. The playground has a life size version of the board and we pick cards and go to the right space. It was a great start to the week. Cole also did a great tour of the Give Kids the World Campus here on YouTube. https://www.youtube.com/watch?v=_eG1tTA0Gc0&t
First day to spend at the park Audrey started her day off with some pancakes and yogurt in bed. Then we met our friend Kile at Hollywood studios so that we could start our Frozen focused day. We walked around a bit and ended up over in Pixar so we rode the toy Story ride which was awesome then went to the Frozen show. After that we stopped off and saw the Frozen show. It was pretty amazing. Then we headed over to see Olaf. Audrey fell asleep so Cole, Kile and I went and rode Star tours. The picked Cole as the rebel spy and he was all excited to get put on the screen. Then we went and saw Olaf, Mickey and Minnie. We had done everything we needed at that park so we headed over to Epcot to do the Frozen ride which was good and meet Elsa and Anna. All of that went very well. We wondered a bit after that and ended up riding the test car ride twice at Audrey’s request then us boys went and rode the rocket ride and we picked the orange (more intense) style. Cole barely made it through without throwing up. Then just before heading out we did the earth ship ride which is the slow ride inside the big ball.
The second day at the park we went to the Magic Kingdom and it was crowded. At least we get to get in the fast pass line on every ride and the cast members were amazing. Started the day off right with meeting Mickey Mouse and it was fun to watch him talk with Audrey and we caught the dance party too. Then we made our trip around the park counter clock wise and got to most of the rides other than tomorrow land. Audrey rode everyone including splash mountain that Cole didn’t ride. That girl has no fear! The next day we planned to go back to the Magic Kingdom to finish up tomorrow land and ride some of Audrey’s favorites again like the little mermaid. We rode the haunted house twice, peter pan twice and the little mermaid twice at Audrey’s request.
Our last day at Disney was great. We started a little later as we were tired so got moving a little slower. We headed to the parks but stopped at a special discount store along the way called casting connections. You have to have a cast member with you to go in. We had Kile of course. We got a number of nice Disney things at hugely discount prices. The. We got to the Magic kingdom about noon. We saw snow white so we stopped by and got a picture with her. Then we headed to Tomorrowland to finish up what we missed the day before. We rode buzz lightyear ride and then went to the laugh factory. Cole got chosen to do jokes during the show. It was a lot of fun. Then we rode the rocket ride. After that Melissa, Cole and I rode space mountain. It was Coles first real roller coaster. He was scared but did great. Audrey and Kile rode the people mover while we did that. By then we were hungry so Kile suggested since we on our wish we should see if one of the most reserved restaurants be purchased guest would let us in. We walked up and asked and they said sure just give us a minute to get your table ready. With in 5 minutes we were being seated. It was beautiful in there and apparently the only place to meet the beast which we did after dinner. The food was very good and they had beer which was very good as well. After dinner it was getting late so we made apparently plan on what rides to hit before close. We decided the be our guest story, 7 dwarfs mine train, Aerial and Peter pan. We ended up riding the 7 dwarfs train twice and stopping to ride Winnie the pooh along the way that she also decided she wanted to ride twice. Then we still had some time soon we rushed over to ride thunder mountain before close. She liked that one a lot too so we finished our Disney trip by riding it again before leaving.
The next day was a day to rest and just hangout at Give Kids the world. The kids and I decided to let Melissa sleep in so we headed out to play a bit and grab some food. We decided that it was a good day to have Ice Cream for breakfast. We brought Mom back some real food though. After that we decided it was time for some fun at the playground then headed over to do some fishing. After that Melissa met up with us and we spent the rest of the day in the pool. Audrey signed her star and put it in the star box for the star fairy to hang on the wall so she will always have a place at Give Kids the world. After that we took naps then headed down to enjoy a little Christmas and hangout with Santa . Got the kids to bed fairly early so we could enjoy a day at Universal studios the next day.
Universal was a blast. We had no idea what to expect as we knew nothing about the park. We heard the Harry Potter stuff was cool and the train between was a fun experience so we made sure we had that on the list. We started in the Adventure Island side. We went Counter clockwise so we started in the Doctor Suess area and rode the Cat in the Hat ride. Then we headed over to watch the Eighth Voyage of Sinbad stunt show. It was really good. Then we walked through the Poseidons Fury ride. It had a lot of really good effects and the kids enjoyed it. Next we headed over to the Harry Potter area and rode the easier Harry Potter themed roller coaster then went into the castle to ride the Harry Potter and the Forbiden Journey ride. Audrey was to small so Cole and Melissa rode it then we switched off and Cole and I rode it. Again the technology was amazing and very immersive. We continued around the park riding the rides that we could all ride. Most of them were a combo of a ride and 3D animation. It was a cool mix and we all enjoyed it. We then rode the Harry Potter train over to Universal Studios and hit a few of the attractions over there as well. The best thing about universal studios was the staff really took care of us once they say we were on a Make-A-Wish trip. They would walk us right up the exit to the ride and were super helpful. We ended our day with Dinner at the Hard Rock in front of Universal Studios. It was a long day but we were glad we chose to do it.
Now it was time to pack up and get ready to head home. We had to be out of our Villa by 11 but didn’t fly out until 4 so we had some time to just hang around the village. We did some playing at the playground and took Melissa over to see all the fun things at miniature golf. We went and found our star in the hall of stars and got checked out. We were exhausted once we got on the plane. What a jammed packed 7 days we had.
When we got off the plane and walked out of security we had all our friends and neighbors waiting to welcome us back and get us home in style again. Of course the pink limo was waiting for us and we all piled in and headed home. We were tired but it was fun to see everyone there.
In the end it was an amazing experience. Give Kids the World is an amazing place that I am sad is there. When you go into the hall of stars there are over 150,000 stars hung up. That is a lot of families going through a lot of hurt. We met 2 families that had terminal diagnosis and were spending some good quality final days together. We talked and consoled each other knowing the pain of the fight. The memories that we shared during this week we will always have. The joy and wonderment that both Cole and Audrey had can never be replaced. So many laughs and and smiles through the week as well as a lot of tears as we knew going into the week that the chemo wasn’t working and we have few if any options left. My mind kept going to this is our time to spend some good quality final days as well. I am not saying we are done fighting because we are not. But we know that the chance for cure is getting next to impossible and would have to wait until we got back to see what the future would hold.
The Link to view a bunch of our Disney Pictures is here. Or cut and paste https://www.dropbox.com/sh/541ymsiiqf8megl/AAAFPIQscf7FvhBkDKmLMltma?dl=0 in your browser.
Wow! I can’t believe an entire year has gone by and we are back to Easter again. Easter last year was the first holiday since we started that we didn’t spend in the hospital. When we got back from our Make A Wish trip we met with our Oncologist and she said she no longer felt comfortable giving Audrey chemo because the scan showed potential growth. We told her we had already consulted with our doctor from Houston and he said it was OK to do another 2 cycles and scan again to see if anything is changing. She refused to continue treatment stating Audrey’s health was at risk. Guess she forgot Audrey has cancer. Though we aren’t in the hospital this year we are traveling to Los Angeles to meet a team there to hopefully qualify for a phase 1 trial that might help prolong Audrey a bit more or if we are super lucky get rid of the cancer. Since we got back from the Make A Wish trip we have been applying for trials all over the country.
Since then we have been talking with doctors all across the country and discussing what we can do. It’s been 8 weeks since her oncologist denied her chemo and we have been chasing every possible angle trying to find other options. We have looked at and been denied for clinical trials in New York and Chicago and are now heading to L. A. There is an experimental phase 1 trial for Olratumab and High-Dose Ifosfamide chemo. We are very much hoping to be accepted and start treatment as soon as possible. The good news on this trial is if we are accepted and it shows progress we could at some time transfer our trial back to Phoenix Children’s Hospital where we are now going for care while in Arizona.
What an appropriate day for us to leave. Easter Sunday. As we celebrate Jesus rising from the grave and covering our sins we will be heading out of Phoenix and rising from the ashes into the city of angels Los Angeles. Praying that all the closed doors are leading to the right open door. We are trying to cherish every moment while fighting through the reality of the most likely outcome. How do you get past that reality? How do I walk Cole through this reality? Those are the questions that just scare me. I continually have to catch myself worrying more about the what could happen then what is happening now. I can dwell in my own pity sometimes while totally busted and broken and miss whats right in front of me. Or I can put off grieving until it’s time to grieve and enjoyed every moment between now and then. What if we all lived our lives that way? How would that change us and our view of whats important? This family of 4 continues to stay a family of 4 as long as we can. We will continue to seek out treatment anywhere we need to go and make friends and memories along the way.
Look at California here comes Audrey.
Since we left for California we have been very busy in our fight. Audrey was accepted into the trial for Olaratumab a monoclonal antibody that has been found to work well at slowing cancer progression. The antibody will be paired up with a high dose of Ifosfamide chemo to try and stop progression and hopefully even start killing the cancer. On the 25th of April Audrey got her first dose of Olaratumab and then her second on the 2nd of May. The first cycle is just the antibody to see how she takes it then we start with the chemo in addition to that in cycle 2. We even squeezed a trip into Disneyland in between the doses and had the best day we have had in a very long time. Our experience at Disneyland was way better than our make a wish at the magic kingdom as the wheel chair access and Disable Access Service helped make for a easier day for us. The cast members were also all very accomidating. They even reserved us a special spot to watch the electric parade. After the second does of the antibody because it isnt supposed to be too toxic they let us go home to Arizona for a week while we were waiting for the second cycle to come.
Our time at home was awesome. We got a chance to get caught up on yard work, gardening, bill paying and I even built a new quadcopter that a friend already had all the parts for. It was a relaxing week but it was over before we knew it and we had to pack up and head back to California. Unfortunately Audrey’s health had taken a big turn for the worse. On day 4 of being home she started not wanting to eat and occasionally throwing up. We thought she was just constipated and tried cleaning her out. She wasn’t looking any better so we took her to the ER at Phoenix Children’s and they felt she was stable and might have just caught a stomach bug. I knew that wasn’t the case and called our doctor in California. They decided we needed to get back to see them quickly so we packed up and left early on Thursday May 11th to head straight to the Children’s Hospital of Los Angeles. We made our appointment time and they checked her out. They gave her fluids because she was slightly dehydrated but felt she was not well but stable enough to wait until her already scheduled MRI the next morning to see if the cancer was the culprit. We got our scans done and things went well but she wasn’t feeling very well at all and sleeping pretty much non stop at this point. We headed back to the apartment we have rented to wait for the MRI results. MRI results came in and they told us to get the the ER as quickly as possible and that the Neurosurgeon team would be waiting for us. It turns out all of her current symptoms were being caused by hydrocephalus or a build up of fluid on the brain. They thought that the cancer has possibly grown enough to clog the vents to the spinal cord causing the build up of pressure. They started giving her Dexamethasone a strong steroid to combat the swelling and ease the symptoms and admitted us into the hospital to decided what they were going to do. After a few doses of the steroid she started waking up and looking much better so the team decided to hold off the emergency surgery until Monday when they could have a full team. Through the weekend she struggled with nausea and headaches as the pressure continued to build. On Monday they placed a shunt which is a tube in her brain that goes to a one way pressure valve that connects to a tub that allows the fluid to drain into the open cavity of her abdomen. Everything seemed to go OK but she still didn’t feel all that well and was very weak. Tuesday went OK but she still didn’t seem to feel well but was making progress it seemed. Wednesday came and they took the bandage off and said as soon as she poops we can leave as she hadn’t gone in over a week at this point. As Audrey and I were watching YouTube videos I saw her eyes start to bounce. I asked her if her eyes felt weird and she said “My brain is controlling my eyes and I can’t stop them”. This freaked me out and I hit the emergency button. It had stopped by the time she got in there but started back up again. She called the floor doctor and after she evaluated Audrey she called for a STAT CT. We got Audrey mobile quickly and headed off to CT. I instantly saw on the scan the fluid build up was back. Audrey wanted to go to the playroom while we waited for results so we did. Next thing you know the nurse quickly came in and said we needed to go right away and the neurosurgeon was wanting for us in our room when we got back to poke a needle in her head and drain off some fluid to relieve the pressure. Audrey had started throwing up by then and as soon as they pulled the fluid she felt worse. Next thing I know the doctor and nurse were getting us ready to head to the OR. She needed an antibiotic which took a while and the nurse was running with us down the hall hanging it while we rushed to the OR. They needed to get back in and see what had failed. After about and hour and a half the surgeon came back out and said everything things was OK and he couldn’t tell us exactly why it had failed but they put a lower pressure valve in this time to make it easier to drain. After the Neurosurgeon team and oncology team met they think that the cancer that is lining the brain is causing the pressure to build up in a very different way than normal and is why the first valve caused the problem. After surgery she looked very good and much more awake. The next day was pretty uneventful and then they discharged us so we could go back to the apartment on Friday.
During all of this craziness somewhere along the way Audrey’s liver took a hit from one of the medications and we can’t seem to figure out which one. It caused her liver enzymes to go 10 to 15 times the normal which is pretty bad. This is keeping us from starting chemo and now that we have the brain better under control we still have to wait for the liver to come back down. At this point we need her ALT to be under 105 and it’s now down to 289 so still a good bit to go. All the time the cancer is growing and making it harder to keep fighting this already tremendously difficult fight. She is now much weaker than she was before the brain build up but getting slightly stronger everyday. We go back in for testing tomorrow for the liver in hopes to get started on chemo as quickly as possible.