On Nov 5 just two days after being discharged from Millers Rehab Alanna was admitted to UCLA to begin Chemo cycle 4 of 9. It was very hard for us to go back to the hospital after just getting out. We complained and cried and kicked our feet. I think I was worse off than Alanna. And Alanna was pretty bad. However we were blessed that Alanna's meds worked extremely well and the side effects were minimal. No nausea being the big one.
We had a lovely six weeks. Thanksgiving was perfect. We ended up going out for dinner and we are so grateful for whomever anonymously paid for our meal. It was such a gift and touched us greatly.
The week after Thanksgiving Alanna's doctor gave us permission to take her to Disneyland! We had so much fun that Alanna refused to leave :). Disneyland accommodates kids with special needs so very well. I felt very rested and actually felt joyful with the vacation. We had taken her last year two months before she was diagnosed. I had not realized the amount of work that I did in order to go to Disney and at the end of that trip felt I needed a break from Disney. The amount of time she needed to be carried or calmed in lines or just around the park was beyond my ability to enjoy myself, it was very exhausting. However taking Alanna with accommodations so she could enjoy the park the way it is intended was a great blessing to our family. I am so glad we did it.
Alanna got rid of her NG tube on Dec 5. Her blood counts were finally improved enough to allow her to do the G tube surgery. It went well and her belly is healing rapidly. But the very best thing about getting rid of the NG tube is that Alanna is so much more comfortable.
We took her to see Wreck it Ralph Breaks the Internet on Dec 10 she absolutely loved the movie. But the very best part is that she ate the popcorn. I know that may sound silly, everyone eats popcorn during a movie. But what you may not realize is that Alanna had not eaten anything by mouth since June when she got the NG tube put in. Now free from the NG tube she slowly munched popcorn for over an hour! The next day she continued eating popcorn. . . She has eaten a bag of microwavable popcorn now for 7 days straight! For the last 3 days she has been eating shredded cheddar cheese.
Alanna's birthday was Dec 15. She had an absolutely amazing birthday! She went bowling with her friends. This was a dream playdate. Something she wanted for months and it couldn't have turned out any better than it did. She was a 7 year old little girl being a kid, enjoying friends, playing and eating brownies. The next morning she told me that this was the best birthday ever. And it was, it really was. She made homemade pizza which is where she discovered she liked cheese again and she made her favorite chocolate chip cookie cake which she enjoyed a few bites of. Like any little girl she loved opening her presents and she was oh so very happy and we cherished a day where we could just have fun.
Tuesday, December 18, 2018
End of Rehab and Move back to Goleta
The last month and a half has gone by so quickly because Alanna has improved in health and abilities so quickly. Miller Children's Hospital Rehab pushed her to push herself. In four weeks she went from crawling to able to use a walker and take unassisted wobbly steps. We entered Millers with the hope that she would be able to walk again. We are so glad we did it and so happy with the team of rehab specialists that worked with her through physical, occupational, speech, recreational, and music therapy. Alanna improved greatly in every area.
We did spend Halloween at Millers which was so much fun. Alanna dressed as a black cat, she wore her leg braces under her costume and used a walker. She trick or treated through the hospital halls walking for 30 minutes. She was beyond exhausted by the end. The hospital gave small toys, no treats at all. Alanna has always preferred getting toys over candy for Halloween so this was amazing for her. We got our own firefighter to go with us and when Alanna was tired and ready to go back to her room our firefighter finished trick or treating for her.
Since we were at Millers for four weeks St. James Inn decided that they wanted to open the charity home to other families so Steve with the help of several members of the Santa Monica 2nd ward of the Church of Jesus Christ of Latter day Saints helped to pack us up while Alanna and I stayed in the hospital. We moved back to Goleta to live with Steve's family until we can get Alanna through cancer treatments. We had hoped to stay in LA until treatments were over but God has other plans for us. We met so many wonderful people in LA and are so grateful for the friendships we made. I was very heartbroken to not be able to say goodbye to so many people. We hope to be able to continue friendships even though we have moved for now.
But, Oh my goodness it is so nice to be back home! Oh how I have missed it. Since being home and being around people who knew us before our traumatic experience the deep understanding with friends and family is allowing my heart to finally start to mend. My daughter has had some playdates with friends that knew her before she was sick, kids that don't see her as strange with her altered appearance. She is starting to open up again to be herself because she is around people who have always loved her and known her.
Yes, the drive to LA once a week is weary but the reward of being home is great. My heart is lifting with the support I am receiving. We will get through this together. Thank you for all of you who pray for us and lift us up in the many ways that you do it.
We did spend Halloween at Millers which was so much fun. Alanna dressed as a black cat, she wore her leg braces under her costume and used a walker. She trick or treated through the hospital halls walking for 30 minutes. She was beyond exhausted by the end. The hospital gave small toys, no treats at all. Alanna has always preferred getting toys over candy for Halloween so this was amazing for her. We got our own firefighter to go with us and when Alanna was tired and ready to go back to her room our firefighter finished trick or treating for her.
Since we were at Millers for four weeks St. James Inn decided that they wanted to open the charity home to other families so Steve with the help of several members of the Santa Monica 2nd ward of the Church of Jesus Christ of Latter day Saints helped to pack us up while Alanna and I stayed in the hospital. We moved back to Goleta to live with Steve's family until we can get Alanna through cancer treatments. We had hoped to stay in LA until treatments were over but God has other plans for us. We met so many wonderful people in LA and are so grateful for the friendships we made. I was very heartbroken to not be able to say goodbye to so many people. We hope to be able to continue friendships even though we have moved for now.
But, Oh my goodness it is so nice to be back home! Oh how I have missed it. Since being home and being around people who knew us before our traumatic experience the deep understanding with friends and family is allowing my heart to finally start to mend. My daughter has had some playdates with friends that knew her before she was sick, kids that don't see her as strange with her altered appearance. She is starting to open up again to be herself because she is around people who have always loved her and known her.
Yes, the drive to LA once a week is weary but the reward of being home is great. My heart is lifting with the support I am receiving. We will get through this together. Thank you for all of you who pray for us and lift us up in the many ways that you do it.
Saturday, October 20, 2018
Chemo Cycle 3 of 9 and Rehab
Chemo Cycle 2 went completely as expected. Alanna's nausea remained every single morning. She is very skilled at always hitting the bucket now. Her energy level was really good. We had a magical September where we weren't once admitted to the hospital. Not once. We did go to the ER twice to replace her NG tube that got clogged. Those were long ER days, it seemed we were last for most likely good reason since they were seeing a lot of trauma patients both those days. We did fun things, play dates with friends, zoo, children's museum, playground, beach, and the pumpkin patch. And Alanna's hair started growing back!
I do so much wish we could do September over and over again. We loved it and made such wonderful memories to look back on.
On Oct 8 Alanna started chemo cycle 3 this time travelling even further away to Millers Children's Hospital in Long Beach. Alanna has not been able to walk well since March. In June when she lost 20% of her body weight she also lost a lot of her strength. Her mobility in September has mainly been crawling, wheelchair, or being carried. She has weak muscles in her neck due to brain surgery so she tends to hang her head down most of the time. She has desperately wanted to independently move and has been trying to which means if someone is not there to catch her every single time she could fall and get hurt. It was time to get Alanna the ability to be more independent so we decided to try to get into the inpatient intensive rehabilitation program at Millers. In order to get evaluated to do the program we first needed to be admitted to this hospital for something else which is why we started by doing the chemo cycle. She was accepted rather quickly into the program. Right now the discharge date is Oct 26.
The rehab program has been amazing. Alanna has very quickly progressed. We brought her in her wheelchair. She couldn't stand by herself, she loses her balance so quickly. After two weeks of rehab she now races the halls on a pink tricycle, walks quite a ways with a walker, holds herself up, has great strength. She loves swings.
The pink tricycle is actually a really fun story. She had been riding a toddler police car coupe she'd found in the playroom which had given her independence to move through the halls. She rode it down to the gym which is a series of halls and an elevator from the 3rd floor (Pediatric Oncology Department) to the ground floor (rehab gym). She did physical therapy and her therapist, Aimee, told her she couldn't drive the coupe back to her room she either had to chose to use the walker or ride a tricycle. Alanna melted down saying she didn't want to, she wanted to ride her police car. It took 5-10 minutes to convince her to just try the tricycle. She then independently rode the pink tricycle all the way back to her room. Daddy pushed the police car back upstairs as well. Mommy has been racing her with a blue tricycle that we found in the playroom. So yes, everywhere Alanna goes in her police car or her pink tricycle I ride the little blue tricycle! When Aimee left she took the pink tricycle with her. Alanna called her back and said, "Can I babysit your pink tricycle?" Aimee was surprised because of how much she didn't want to do it but was very agreeable to letting Alanna babysit the tricycle. Now Alanna roams the halls playing MarioKart and rides it down to the gym every time she has therapy down in the gym. And I am dodging banana peels and blue shells like crazy because Alanna wins every single race. She is exponentially getting faster.
She also walked a straight 6 minutes on a treadmill, used a walker on a fun princess scavenger hunt all the way from her room to the gym. She does speech therapy and is learning to keep her head up, and clear her throat so she can speak clearer. Speech therapy is doing a lot of food play and encouraging her to be comfortable around food with hopes she will decide to eat again. She has started eating oreo cookies. Which is huge for her. She hasn't eaten anything since June. She 'll be getting braces for her legs to keep her ankles from bending so she will stop tripping over her own feet and she'll be getting her very own walker sometime this week.
Alanna is my hero, I see her confidence being rekindled, her desire to play and be active returning in full force. I love to start seeing her trying to do things that she likes to do again. I have so disliked seeing her being pulled down, I want to make it easier. I'm finding during rehab that I am having to do less and let her do more. I can not even imagine going through what she has had to endure.
Last night Alanna had a fever. Also, her hemoglobin levels and white blood cell counts have dropped dramatically. She got antibiotics for the infection. We are still waiting on blood cultures to see if she actually has an infection. Her blood pressure dropped due to such a low hemoglobin level and she did get her 6th blood transfusion. The chemo nausea everyday has continued so the hospital has been trying all kinds of anti-nausea medications to see if they can find something that will work. Which has not been successful yet. She is confined to her room for 24 hrs after her last fever. She hates being in her room, she is ready for a pink tricycle race. Her hemoglobin level is better since yesterday. We are still waiting for her immune system to recover. She had an MRI last week to check on her tumor bed and it is still all clear. No sign of it returning.
It is still hard for us right now. Thank you to all the notes of encouragement I received over the last two weeks. I can't tell you how much it lifted me up to have real conversations with friends. One step at a time. I am so thrilled Alanna was finally eligible for the rehab program, even though I so dislike the process, I am seeing so much potential and have hope that Alanna heals.
On Oct 8 Alanna started chemo cycle 3 this time travelling even further away to Millers Children's Hospital in Long Beach. Alanna has not been able to walk well since March. In June when she lost 20% of her body weight she also lost a lot of her strength. Her mobility in September has mainly been crawling, wheelchair, or being carried. She has weak muscles in her neck due to brain surgery so she tends to hang her head down most of the time. She has desperately wanted to independently move and has been trying to which means if someone is not there to catch her every single time she could fall and get hurt. It was time to get Alanna the ability to be more independent so we decided to try to get into the inpatient intensive rehabilitation program at Millers. In order to get evaluated to do the program we first needed to be admitted to this hospital for something else which is why we started by doing the chemo cycle. She was accepted rather quickly into the program. Right now the discharge date is Oct 26.
The rehab program has been amazing. Alanna has very quickly progressed. We brought her in her wheelchair. She couldn't stand by herself, she loses her balance so quickly. After two weeks of rehab she now races the halls on a pink tricycle, walks quite a ways with a walker, holds herself up, has great strength. She loves swings.
The pink tricycle is actually a really fun story. She had been riding a toddler police car coupe she'd found in the playroom which had given her independence to move through the halls. She rode it down to the gym which is a series of halls and an elevator from the 3rd floor (Pediatric Oncology Department) to the ground floor (rehab gym). She did physical therapy and her therapist, Aimee, told her she couldn't drive the coupe back to her room she either had to chose to use the walker or ride a tricycle. Alanna melted down saying she didn't want to, she wanted to ride her police car. It took 5-10 minutes to convince her to just try the tricycle. She then independently rode the pink tricycle all the way back to her room. Daddy pushed the police car back upstairs as well. Mommy has been racing her with a blue tricycle that we found in the playroom. So yes, everywhere Alanna goes in her police car or her pink tricycle I ride the little blue tricycle! When Aimee left she took the pink tricycle with her. Alanna called her back and said, "Can I babysit your pink tricycle?" Aimee was surprised because of how much she didn't want to do it but was very agreeable to letting Alanna babysit the tricycle. Now Alanna roams the halls playing MarioKart and rides it down to the gym every time she has therapy down in the gym. And I am dodging banana peels and blue shells like crazy because Alanna wins every single race. She is exponentially getting faster.
She also walked a straight 6 minutes on a treadmill, used a walker on a fun princess scavenger hunt all the way from her room to the gym. She does speech therapy and is learning to keep her head up, and clear her throat so she can speak clearer. Speech therapy is doing a lot of food play and encouraging her to be comfortable around food with hopes she will decide to eat again. She has started eating oreo cookies. Which is huge for her. She hasn't eaten anything since June. She 'll be getting braces for her legs to keep her ankles from bending so she will stop tripping over her own feet and she'll be getting her very own walker sometime this week.
Last night Alanna had a fever. Also, her hemoglobin levels and white blood cell counts have dropped dramatically. She got antibiotics for the infection. We are still waiting on blood cultures to see if she actually has an infection. Her blood pressure dropped due to such a low hemoglobin level and she did get her 6th blood transfusion. The chemo nausea everyday has continued so the hospital has been trying all kinds of anti-nausea medications to see if they can find something that will work. Which has not been successful yet. She is confined to her room for 24 hrs after her last fever. She hates being in her room, she is ready for a pink tricycle race. Her hemoglobin level is better since yesterday. We are still waiting for her immune system to recover. She had an MRI last week to check on her tumor bed and it is still all clear. No sign of it returning.
It is still hard for us right now. Thank you to all the notes of encouragement I received over the last two weeks. I can't tell you how much it lifted me up to have real conversations with friends. One step at a time. I am so thrilled Alanna was finally eligible for the rehab program, even though I so dislike the process, I am seeing so much potential and have hope that Alanna heals.
Thursday, August 23, 2018
Chemo Cycle 2 of 9
Tomorrow Aug 24 Alanna will start Chemo Cycle 2 of 9. It will be the same chemo drugs as Cycle 1. We are hoping that she will react similarly to how she reacted to Cycle 1 so that we know what to expect.
During Cycle 1 she was nauseous in the mornings. I have gotten used to giving her anti nausea medicine as soon as she wakes up to combat this symptom. She still needs the medicine even on the last day of this cycle.
Also she experienced a cold with pink eye and a stomach flu. Her white blood counts were high and we were able to stay out of the hospital. Her immune system was able to get her out of both of these viruses.
For a week and a half Alanna lost some of her hearing. Through chemo drugs she has a 60% chance of losing some of her hearing. We had thought she had lost a great amount. We were watching TV with the volume up pretty loud. Everything we needed to tell her we had to say it twice with considerable volume. Just before her hearing test (She has an audiology appointment every cycle) she started hearing again. The hearing test showed she had considerable fluid in her right ear that was inhibiting her hearing. Also, the left ear had recently drained of fluid. So the result is that she has not lost her hearing yet and there is treatment for the fluid problem.
We spent last Sunday morning in Goleta in the ER getting a new NG tube. Our tube had gotten hopelessly clogged. We tried so hard not to go to the ER that we tried to force water and coke through the tube and made it rain coke because it kept backfiring on us. We were excited to go to church all together and sadly had to cancel and drive to the ER instead. It is never fun to get an NG tube put down Alanna's nose but she did fabulous. She left with a big smile and all of the staff relishing in her cuteness and sweetness.
Hatchimals in the ER. If this situation has taught us anything it is to always be prepared for a hospital/medical visit. We have bags packed that stay in the car for these occasions.
We caught some blissful moments:
During Cycle 1 she was nauseous in the mornings. I have gotten used to giving her anti nausea medicine as soon as she wakes up to combat this symptom. She still needs the medicine even on the last day of this cycle.
Also she experienced a cold with pink eye and a stomach flu. Her white blood counts were high and we were able to stay out of the hospital. Her immune system was able to get her out of both of these viruses.
For a week and a half Alanna lost some of her hearing. Through chemo drugs she has a 60% chance of losing some of her hearing. We had thought she had lost a great amount. We were watching TV with the volume up pretty loud. Everything we needed to tell her we had to say it twice with considerable volume. Just before her hearing test (She has an audiology appointment every cycle) she started hearing again. The hearing test showed she had considerable fluid in her right ear that was inhibiting her hearing. Also, the left ear had recently drained of fluid. So the result is that she has not lost her hearing yet and there is treatment for the fluid problem.
We spent last Sunday morning in Goleta in the ER getting a new NG tube. Our tube had gotten hopelessly clogged. We tried so hard not to go to the ER that we tried to force water and coke through the tube and made it rain coke because it kept backfiring on us. We were excited to go to church all together and sadly had to cancel and drive to the ER instead. It is never fun to get an NG tube put down Alanna's nose but she did fabulous. She left with a big smile and all of the staff relishing in her cuteness and sweetness.
We caught some blissful moments:
The Photo Booth at the Zoo
Petting Alanna's sweet goat friend, Velvet.
Bowling and Arcade games. Bowling was fun and helped Alanna feel a bit more normal since this is an activity we used to do frequently. Yes, mommy and daddy were good walkers for her so she didn't fall but the joy on her face was completely worth it!
Taking care of her fish at Pop and Grandma's house
The first day of First Grade. Alanna's teacher comes to her house to teach her three times a week. He is kind and patient and I hope this will be a good year. I am also quite hopeful that second grade will be in normal school. We will miss the social aspect of school so much.
We also went miniature golfing. The facility claimed to be wheelchair accessible but it turned out the golf courses were not. We ended up carrying Alanna and her wheelchair up and down stairs and it got very exhausting very quickly. We only made it 12 holes before we went home. Although Alanna was happy and did a good job moving her body.
I have been asked it I will ever get used to the routine of having a cancer baby. My answer is absolutely not. There is no routine of having a child in and out of the hospital. There is no way to predict what will happen next. No way to plan in advance. We can plan all we want but as soon as one little thing happens all of our plans don't matter. We were very blessed the last six weeks not needing to be admitted to the hospital for any unscheduled visits. However; I am learning to live with unexpected happenings. I will never feel like this is normal or be completely relaxed. I love the small moments when things feel good, when they allow us hope that someday we will feel that way all of the time. But as for now I pray for those simple and small moments and I notice each and every single one. Nothing is taken for granted. I am so extremely grateful for those of you who help bring us hope and love. We can not have these moments without searching for them right now but they are there and we love it.
Saturday, July 21, 2018
Bittersweet Pioneer Day
Pioneer Day this year is bittersweet.
I have always loved the Pioneers who lived in European Countries or the Eastern United States who learned about the Book of Mormon and chose to follow the teachings of the Church of Jesus Christ of Latter Day Saints. Because of their choice to join the church they gave up their livelihood and many moved to Salt Lake City, Utah to practice their beliefs without interference from harsh laws. I have quite a few ancestors of which this is the case.
Because of their choice I was born in Salt Lake City and grew up knowing about the gospel of Jesus Christ. I didn't believe completely in the church until late into my teenage years. But, I also had experiences that led me to believe wholeheartedly in the gospel. When I made that decision it opened a whole world of faith, hope, charity, and love. It is where I am now. God is opening the heavens to my family and I to comfort, care and love. This life hasn't been easy, especially the current trial but my faith and hope remain unshaken. I know without a doubt that God has prepared me all of my life for the trials that I will be presented with.
I am grateful for my pioneer heritage, that I haven't been searching for the gospel of Jesus Christ all my life because my ancestors already found it for me. The teachings of the Church were already given to me and I was able to take it in my time till I was ready to embrace it. Also, for the physical traits in which I inherited specifically from my German Great Grandmother. I have always loved my dark olive skin that tans so easily! Thank you Great Grandma!
No matter how grateful I am to all of my ancestors and my heritage I was not prepared to learn that cancer has been genetically past down to my lovely daughter. Of all of the wonderful blessings from our ancestors and the lovely sacrifices that they have made for their posterity not all of it can be rosy. There is still the possibility of passing genetic diseases and in my case cancer. Usually we know if cancer is passed down in the family but unfortunately this time there was no way to know. My daughter is the first in this family line to get cancer. But apparently the genetic makeup has been carried for at least four generations.
Oh how bittersweet dear Pioneer Day. Some trials we get to pick. Some are easy to pick up the pieces and move forward. Some we have no control over but God has picked us to confront them. I know that without my pioneer heritage I would not be able to confront the things that I am presented with. However, without my pioneer heritage I wouldn't have to go through a trial where cancer was given by my ancestors anyways. I do know God is making me into something entirely new. Something more like him. Some days the process seems more difficult than others. But it isn't really about me, it's about my daughter. Please, get better little precious girl.
I have always loved the Pioneers who lived in European Countries or the Eastern United States who learned about the Book of Mormon and chose to follow the teachings of the Church of Jesus Christ of Latter Day Saints. Because of their choice to join the church they gave up their livelihood and many moved to Salt Lake City, Utah to practice their beliefs without interference from harsh laws. I have quite a few ancestors of which this is the case.
Because of their choice I was born in Salt Lake City and grew up knowing about the gospel of Jesus Christ. I didn't believe completely in the church until late into my teenage years. But, I also had experiences that led me to believe wholeheartedly in the gospel. When I made that decision it opened a whole world of faith, hope, charity, and love. It is where I am now. God is opening the heavens to my family and I to comfort, care and love. This life hasn't been easy, especially the current trial but my faith and hope remain unshaken. I know without a doubt that God has prepared me all of my life for the trials that I will be presented with.
I am grateful for my pioneer heritage, that I haven't been searching for the gospel of Jesus Christ all my life because my ancestors already found it for me. The teachings of the Church were already given to me and I was able to take it in my time till I was ready to embrace it. Also, for the physical traits in which I inherited specifically from my German Great Grandmother. I have always loved my dark olive skin that tans so easily! Thank you Great Grandma!
No matter how grateful I am to all of my ancestors and my heritage I was not prepared to learn that cancer has been genetically past down to my lovely daughter. Of all of the wonderful blessings from our ancestors and the lovely sacrifices that they have made for their posterity not all of it can be rosy. There is still the possibility of passing genetic diseases and in my case cancer. Usually we know if cancer is passed down in the family but unfortunately this time there was no way to know. My daughter is the first in this family line to get cancer. But apparently the genetic makeup has been carried for at least four generations.
Oh how bittersweet dear Pioneer Day. Some trials we get to pick. Some are easy to pick up the pieces and move forward. Some we have no control over but God has picked us to confront them. I know that without my pioneer heritage I would not be able to confront the things that I am presented with. However, without my pioneer heritage I wouldn't have to go through a trial where cancer was given by my ancestors anyways. I do know God is making me into something entirely new. Something more like him. Some days the process seems more difficult than others. But it isn't really about me, it's about my daughter. Please, get better little precious girl.
Tuesday, July 17, 2018
Alanna's First Cycle of Chemo
Chemo cycle 1 went exactly as planned except for I was not expecting Alanna to bounce back so quickly! I am so pleasantly surprised!
We checked into the hospital at 7am on Thursday, July 12 beginning with an MRI of both Alanna's Brain and Spine. This was a routine checkup to see how well treatments have been so far. The scans came out "Great!" as Alanna's Doctor said. The meningitis has cleared and there is no indication of the tumor.
We didn't get taken to our hospital room until 2pm. And then before chemo could start she had to pee first. We waited till pretty late till the little girl finally decided she would go. She has always held it till impossibly long and pees an impossible amount for a child her size. After checking her urine samples and starting preemptive nausea medications the Chemo drugs were finally administered at the stroke of Midnight. Alanna did not lose her shoe, nor her last meal. For six hours chemo was dripped through her port. We were told that she would need to remain on fluids and they would have to keep getting urine samples from her for 24 hours before we could leave.
So we waited to see side effects. And we waited. We played games. We waited. We watched movies. And waited. We did Mad Libs. Waited. We took a walk down the hall. Still waiting. Still no side effects noticed. We slept all night except for a bathroom run or two.
And in the morning on Saturday, July 14 our 24 hours were up. And the doctors told us we could go home whenever we were ready.
And Alanna slept in. . . Till 10am! So I waited.
Then the pharmacy took their time to get us our medications. So we waited. We had a couple of child life volunteers come and ask Alanna if they could play with her. Which was pretty sweet and she had so much fun.
Finally at noon we had our medications, discharge papers and we left very happily!
The next day, Sunday. Alanna did experience some nausea and vomiting and medication did help some. By Monday afternoon all the nausea has gone away. She is doing very well and is her normal playful and sassy self. Thank you for your thoughts and prayers she has definitely benefited from them and I know she could not bounce back so quickly without all of you.
Tuesday, July 10, 2018
Chemo Cycle 1 of 9
After a relaxing wonderful couple of weeks Chemotherapy will be begin on Thursday, July 12. Here we go again! We are scheduled to be in the hospital both Thursday and Friday. Afterwards we hope to be back at St. James Inn in Los Angeles. Alanna will then have weekly outpatient chemo on Fridays.
Thanks to Brandon from My Wish List Foundation! The pool is pretty awesome!
Birthday and Zoo
It was a lovely birthday weekend. I ran my 3.7 mile birthday run, got a date to Red Lobster with my Steve, played frozen all day with my new ice castle from my daughter, ate a delicious blueberry pie, had a balloon war, and I got to go to church! I am so incredibly thankful to not be in the hospital this weekend and be able to spend the time with my family 
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My puppy ate a cup of popcorn! Pretty good for not eating anything for two weeks. Good puppy!
A traditional Fourth of July
Thursday, July 5, 2018
Negative Infection Check
June 22 Alanna caught a little bug. Her White Blood Cell count was low so her immune system was thought to not be able to handle it. So with a barely fever and some vomiting her doctor sent her to be admitted to the hospital Saturday night.
The ER tried to treat her as if she was an adult and I was not pleased. They scared her and her heart rate went high and they kept testing her for sepsis. They put her on a general antibiotic. She did have a slight fever when we first got there (100.7) but after the initial fever she never had a fever again and she didn't vomit once at the hospital. They made us stay for 48 hours while they waited for all of her blood cultures to come back to make sure she didn't have any infections. After 48 hrs we were good to go. It wasn't fun but we were thankful we had decided t.o stay in LA that particular weekend because just checking ourselves into UCLA was so much better than being driven by ambulance from Goleta.
This experience has taught us that we will be spending the majority of our time for right now in LA rather than going home to Goleta. We'll be back someday when Alanna's health allows it.
That weekend we also had some fun with some cousins.
I couldn't seem to get her to wear the Moana dress with the Moana wig but maybe she will someday :)
The ER tried to treat her as if she was an adult and I was not pleased. They scared her and her heart rate went high and they kept testing her for sepsis. They put her on a general antibiotic. She did have a slight fever when we first got there (100.7) but after the initial fever she never had a fever again and she didn't vomit once at the hospital. They made us stay for 48 hours while they waited for all of her blood cultures to come back to make sure she didn't have any infections. After 48 hrs we were good to go. It wasn't fun but we were thankful we had decided t.o stay in LA that particular weekend because just checking ourselves into UCLA was so much better than being driven by ambulance from Goleta.
This experience has taught us that we will be spending the majority of our time for right now in LA rather than going home to Goleta. We'll be back someday when Alanna's health allows it.
That weekend we also had some fun with some cousins.
Doctor Watson
The last quarter of graduate school has not been our focus. Our entire focus has been our daughter’s fight with cancer. I am proud and so impressed with this guy. He has supported our daughter and me with an exceeds expectations rating in addition he has also earned a PhD in Spanish Linguistics! He deserves so much more than I can give him.
Three days before commencement Alanna was discharged from the hospital after getting her feeding tube. The hospital staff was accommodating in hurrying to make sure we could get out in time to go to Goleta for this. I also was a fast learner in learning how to use the food pump.
During commencment I was amazed that Alanna and I were there. Actually a bit shocked, I shed tears of relief and joy. I am so happy to have spent this day all together tying the knot at the end of our UCSB experience.
Alanna pretending to sleep. I guess it was a bit boring. . .
During commencment I was amazed that Alanna and I were there. Actually a bit shocked, I shed tears of relief and joy. I am so happy to have spent this day all together tying the knot at the end of our UCSB experience.
CONGRATS DR WATSON!!!
We are so extremely proud!
Thursday, June 14, 2018
Radiation Side Effects
With the end of Radiation Therapy. Here are all of the side effects that we experienced:
1. Severe malnutrition. Quick loss of 20% of Alanna's body weight. The first four weeks Alanna experienced nausea and vomiting. Weekly chemotherapy also added to this. Chemo changed the way things tasted. Almost all of Alanna's favorite foods now taste bad and she refuses to eat them. Alanna also has always refused to eat any new foods. The only thing she is still willing to eat are chocolate muffins and only very small amounts. This has led to another hospital stay which started last Friday. We should be discharged this coming weekend. Last Saturday Alanna was fitted with an NG feeding tube. Terrible experience for us. Sticking a tube down your babies nose is not something I will want to relive again. Which I will have to in 30 days when the tube needs to be replaced again. I hope it is very temporary. She will go home with her tube this weekend. We are here until they get the dosage right and I learn how to care for her while she uses it.
2. Raw, scaly, sore red head. To me it looks like her head is burning in a way. (The scar is from her brain surgery at the end of March).
3. Hair loss.
1. Severe malnutrition. Quick loss of 20% of Alanna's body weight. The first four weeks Alanna experienced nausea and vomiting. Weekly chemotherapy also added to this. Chemo changed the way things tasted. Almost all of Alanna's favorite foods now taste bad and she refuses to eat them. Alanna also has always refused to eat any new foods. The only thing she is still willing to eat are chocolate muffins and only very small amounts. This has led to another hospital stay which started last Friday. We should be discharged this coming weekend. Last Saturday Alanna was fitted with an NG feeding tube. Terrible experience for us. Sticking a tube down your babies nose is not something I will want to relive again. Which I will have to in 30 days when the tube needs to be replaced again. I hope it is very temporary. She will go home with her tube this weekend. We are here until they get the dosage right and I learn how to care for her while she uses it.
2. Raw, scaly, sore red head. To me it looks like her head is burning in a way. (The scar is from her brain surgery at the end of March).
3. Hair loss.
Alanna Loves Radiation
I have been counting down the days left for radiation. Today was our last treatment. I am so relieved and excited to be done and I thought Alanna would feel the same way.
Interestingly, this is not true. Alanna actually has fallen in love with the routine.
Two nights ago when she asked, "Is there radiation tomorrow?"
I told her, "Yes, but. . ."
Alanna, "YAY!"
I was completely taken aback. I was going to say: ". . .but there are only two days left!"
Me, "You like radiation?"
Alanna, "Yes!"
Okay. . .
So yesterday morning on the way to radiation I decided to test this. How could she love radiation so much?
I grabbed her puppy. "Alanna, Wally has never been to radiation can you teach him why you like it?"
Alanna, "Because of cuddles"
Lots of cuddles have always happened during radiation. Alanna and I snuggle on the gurney together and I hold her tight while she is sedated. What a sweet loving girl this is.
Alanna, "Wally, we are going to radiation."
Me as Wally, "What is radiation?"
Alanna, "It's where they make us wait a long time!"
Oh, my heavens what a funny answer! And true, we do often wait forever!
Alanna, "This is the bathroom, and the Mickey mouse face masks."
Wally, "Ruff! Ruff!"
Alanna, As we start moving towards the Radiation room, "Wally this is the big Tic Tac Toe Board, do you see it?"
Wally, "Arf, Arf!"
As we are pushed into the room with the big machine: Alanna, "Ooooh! This is my favorite part!" She then snuggles up right next to me and gets completely comfortable. Her nurse, Sophie, tries to put her pull-sock on (pulse monitor).
Sophie, "Where does the pull sock go Alanna?"
Alanna, "Well it's called a pull-SOCK!
Alanna, "My foot is playing a game! (She wiggles her feet all over the place and Sophie tries to catch a toe to put the sticker on!)"
Once Sophie finally gets the pull-sock on she puts a blood pressure cuff on her ankle.
Then Alanna snuggles up and our anesthesiologist hooks up the sedation to her port line.
Now this is Alanna's favorite part: she holds mommy close and mommy holds her close. Alanna always says, "I Love You" two or three times while she falls asleep.
For the first four weeks of radiation I knew Alanna always mumbled something to me as she was falling asleep and I couldn't quite catch it. I was so surprised and touched when I finally understood what she said as she fell asleep every time. What sweet words for me.
For Alanna, radiation isn't about killing cancer cells in her brain. It isn't about laying still trapped in a mask for twenty minutes. It isn't an inconvenience to her schedule. Nor the reason she missed the last term of kindergarten. It isn't something she fears. It is a special time where she feels completely and utterly safe with her mommy. And she loves it. I am amazed at her strength and ability to find comfort and joy in a place where I never would have expected it.
Interestingly, this is not true. Alanna actually has fallen in love with the routine.
Two nights ago when she asked, "Is there radiation tomorrow?"
I told her, "Yes, but. . ."
Alanna, "YAY!"
I was completely taken aback. I was going to say: ". . .but there are only two days left!"
Me, "You like radiation?"
Alanna, "Yes!"
Okay. . .
So yesterday morning on the way to radiation I decided to test this. How could she love radiation so much?
I grabbed her puppy. "Alanna, Wally has never been to radiation can you teach him why you like it?"
Alanna, "Because of cuddles"
Lots of cuddles have always happened during radiation. Alanna and I snuggle on the gurney together and I hold her tight while she is sedated. What a sweet loving girl this is.
Alanna, "Wally, we are going to radiation."
Me as Wally, "What is radiation?"
Alanna, "It's where they make us wait a long time!"
Oh, my heavens what a funny answer! And true, we do often wait forever!
Alanna, "This is the bathroom, and the Mickey mouse face masks."
Wally, "Ruff! Ruff!"
Alanna, As we start moving towards the Radiation room, "Wally this is the big Tic Tac Toe Board, do you see it?"
Wally, "Arf, Arf!"
As we are pushed into the room with the big machine: Alanna, "Ooooh! This is my favorite part!" She then snuggles up right next to me and gets completely comfortable. Her nurse, Sophie, tries to put her pull-sock on (pulse monitor).
Sophie, "Where does the pull sock go Alanna?"
Alanna, "Well it's called a pull-SOCK!
Alanna, "My foot is playing a game! (She wiggles her feet all over the place and Sophie tries to catch a toe to put the sticker on!)"
Once Sophie finally gets the pull-sock on she puts a blood pressure cuff on her ankle.
Then Alanna snuggles up and our anesthesiologist hooks up the sedation to her port line.
Now this is Alanna's favorite part: she holds mommy close and mommy holds her close. Alanna always says, "I Love You" two or three times while she falls asleep.
For the first four weeks of radiation I knew Alanna always mumbled something to me as she was falling asleep and I couldn't quite catch it. I was so surprised and touched when I finally understood what she said as she fell asleep every time. What sweet words for me.
For Alanna, radiation isn't about killing cancer cells in her brain. It isn't about laying still trapped in a mask for twenty minutes. It isn't an inconvenience to her schedule. Nor the reason she missed the last term of kindergarten. It isn't something she fears. It is a special time where she feels completely and utterly safe with her mommy. And she loves it. I am amazed at her strength and ability to find comfort and joy in a place where I never would have expected it.
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