Wednesday, November 30, 2011

temporary traditions

We are not getting our traditional tree this year. We won't be getting our traditional luminaries. One of my very favorite times of the year is Christmas Eve. Over the past 7 years we have created such an amazing and warm tradition. In the past years, we eat an early dinner and the kids get in their PJ's. We get into the car, turn on the Christmas music and drive around to look at all the glorious lights. The Luminaries make it even more magical that night. When you drive past peoples homes, you can look in and see families gathered together laughing and hugging and it just seems so magical and simple.

This year we will be in Memphis. One thing I do know is that it will be an amazingly special and very different holiday. It will be ok though! We will be together. What more do I need? Nothing. Nothing at all. For what ever reason (and we WILL know it one day) we are supposed to be there. We are supposed to meet the people we are about to meet. We are supposed to have this happening. I was awake for a long time last night. The comments I have gotten on the blog, on Facebook, in the mail and in my email inbox were swirling in my head. I just kept thinking about how all of you are supposed to be in our lives for a reason right now. If everyone going through something had half of the amount of support we did right now, they would call themselves blessed! Despite all we are going through right now, we still feel so blessed. Right now, the bump is GONE. We have each other. We are spending lots of quality time together right now. More then we ever get to normally. Plus, of course we are truly embracing the importance of it all.

Carolyn had a great idea. In lieu of getting a big tree, she found two tiny trees for the kids rooms. Pink and sparkles all the way for Kayla. Blue and cool just for Anthony. SUCH a great idea. Not to mention what cool night lights they make! We waited for her girls to get home from kindergarten and then we had so much fun decorating.  So, while Bieber played in the background, we got a little into the spirit.






Anyone see a pig in there?
My mom stopped by with some more thoughtful surprises for us including some hand made hats from Vera. Vera is 85 yrs old and lives across the street from my mom. She has known me since I was 6! She felt like knitting would be appropriate. She is so cute!


Denny is happy with his hat. We might still need to shop for something a little warmer for TN. though. ;) And Diana, I am SO glad you sent multiple pink toe socks. He is going to wear through these babies fast! I made sure to take a few cute pics of Kayla in her hat too. I LOVE these pics!!





Later on, Kolleen dropped by with a very special gift. A healing quilt! It is absolutely gorgeous!!! Denny said it even smells like a healing quilt. We LOVE it. Kayla was already asleep when we saw it, but we can't wait to show her when she wakes up. She will love this forever!! So will we!!!! Look at how amazing people are. People are GOOD and gracious. Kris & Cate... THANK YOU!!!!




Update from St. Judes: 
Our paperwork was received! All the foot work was WORTH it! It made it there safe and sound. They have started Kayla's chart. We are hoping the slides arrive on Friday so they can mull over her diagnosis over the weekend and get a plan to us on Monday. Again... Friday. What is it with Fridays??? Darn it. I like saying TGIF. I guess I will have to come up with a new day! It's looking like Wednesday or Thursday we will be flying out and starting this journey. Still getting the ducks in a row here... but it's happening!

Tuesday, November 29, 2011

the checklist

If someone had told me on Thursday, November 10th that I would be sitting here only 19 days later with Kayla recovering from brain surgery and getting ready to hop onto a plane headed for St. Judes, I would have laughed hysterically. Isn't it amazing how life can just change in the blink of an eye?

Today was a day filled with preparation. Denny and I got up super early to head into San Francisco to get the ball rolling on this whole process. It was cold and foggy. Denny was the only person wearing shorts! I laughed at him when he realized he was a tad chilly. I told him that he shouldn't plan on packing shorts to wear in Tennessee! We're going to have to get this cali boy some warm gear before we head East.

Over the Golden Gate Bridge again:
Our appointment with Oncology was at 9 a.m. We walked into UCSF and took the elevator down to the basement level. Isn't it ironic that Oncology is located in the basement? Anyhow, we waited for what seemed like eons, but was really 25 minutes, for the doctor to arrive. When she arrived with two other people (one being Dr. Mueller's resident) we got down to business. To recap: the resident was the person who dropped the bomb on us the night before we received the results from the oncologist. She was the one who told us at the foot of Kayla's bed that they needed more time to come up with a treatment plan and that was why it was going to take some extra time. Ok, onward. The doctor was disappointed that we did not bring Kayla to this appointment and that without examining her, she would not be able to get all of the info she needed. Denny and I explained that we asked (with 3 witnesses in the room) if Kayla needed to be present for this appointment and we were told, "no". We moved on. The Doctor said that after getting the full pathology report, she would want to start treatment earlier then they had originally though. She wanted us to start as early as next week. We figured that would be the best time to fill them in about St. Judes. I said, "well, about that... actually, Kayla has been accepted to under go treatment at St. Judes." Their eyes widened and all of a sudden all three of them were smiling! It was so strange. It was as if I read relief across their faces. Without saying anything, they congratulated us and wished us the best. It was so strange though... the room just felt lighter and the air smelled a little better. They were nodding and smiling as if to say the approved in our decision as well.  Who knows. That is my interpretation.

On a mission:
We left their office to start on our huge daunting task of obtaining ALL of the records that needed to be forwarded to St. Judes. Denny recalls our route best. We seriously could have used roller blades. First we left the basement and headed across the street to the second floor (Dr. Gupta's clinic).  No one was in the office today. Nice! Then from 2nd floor clinic to the 8th floor clinic (where we learned that ALL of the people we needed to get our information were out all week on a conference). Then from the 8th floor clinic we walked back to the hospital again and went to the 3rd floor to the Radiology film place to get our MRI discs burned. Oh, but wait! The burners were down!!! Of course they were. So then we went back across the street AGAIN to pediatric services. That wasn't any help. Then we got sent to medical records in the basement level. Ding Ding Ding!!!! We have hit the jackpot here. It was a tiny office with only one person working. She was a HUGE help. Why hadn't we thought to go there first? Ok, so now you all know just in case.  After signing more Hipa release forms, we walked back to the hospital side to see if the disc burner was back up and running. It was! We waited maybe 15 mins and got two discs burned. (One for a back up) We went back and forth so many times. The guy at the vending truck selling sandwiches and things just smiled and laughed each time we walked by.... again and again! From there we had to drive over to Mt. Zion which is a different UCSF building. This is where pathology is located and our slides were. I called when we were walking from our car to give them a heads up that we were on our way up. Surprise surprise, they had no clue we were coming for the slides and they guy sounded so frazzled. He explained that it would take some time to get these ready. At least a day or two. As he is trying to rush me off the phone I kindly told him we were on his floor and I would appreciate so much to speak with him in person while we were physically there. He kind of had no choice! I am SO glad we went in. He wrote down specifically what Tabitha (from St. Judes) was needing along with all of her info. Sometimes things just go so much smoother when there is a face and not just a phone call. I am crossing my fingers that when he gets the slides back that he sends them straight away and they make it there all right. That is the only thing that they will be waiting on now so we can get our itinerary! All documents were sent overnight and they should be holding all of my baby s records in just a few short hours. I must admit I was tempted to jump on a plane and hand deliver them to ensure they made it safely. I did make back up copies of everything though just in case!

Later today, Dr. Mueller's resident called our house to confirm that they cancelled our appointment for Thursday. She said they all wished us the best of luck and that we could call any time if we need them in the future. Then she started asking me a bunch of questions about St. Judes. She said she was just curious from a "learning standpoint". I thought that was interesting. So, hopefully everything will arrive tomorrow safe and sound and we will be one step closer to a real date on when all of this will begin. Denny and I have so much preparing to do still. I know so many of you want to help, but unfortunately we are the only ones who can do this part. Again, what part of all of this is convenient again? Good night friends!!! Hug each other tight!

Monday, November 28, 2011

Movement Monday

Since this horrible nightmare began, it always seems like we have been kept on hold every weekend. I have never been so anxious for a Monday morning as I have the past few weeks.

Today, we got a lot accomplished! We ( I should say my angel, Donna ) got a hold of the main coordinator for St. Judes, Tabatha. Donna couldn't wait to call us and fill us in on all of the positive information she learned about this AMAZING facility. She explained to Tabatha that she is an RN and is advocating for our family. (Best friend for over 30 years she will soon find out.)  She said that Tabatha was SO kind. She pointed out a TON of positive things about Kayla and her case. One being that she was "over the moon" that Dr. Gupta had removed the entire tumor. This is huge in her prognosis. Also, another plus is that as far as the treatment will go, Kayla won't be starting Chemo until spring so the cold and flu season will be over. That is great news as well.  Tabatha told Donna that we can start packing. That we have "verbal" confirmation that St. Judes will be accepting Kayla into their amazing treatment program.

Here are the details that we know so far. (This is all subject to change as you all know) Towards the end of next week, we can plan on us (Denny, Donna, Kayla and I) flying out to Memphis, TN. to begin our first steps. Here is the email from Tabatha describing what to expect:
The first week here will be used to do her pre-therapy workup which includes MRI Brain and Spine, NM Bone scan, Lumbar Puncture, labwork, radiation therapy planning and simulation, audiology exam along with consults with all of our auxiliary departments. She will have consultations with nutrition, anesthesia, physical and occupational therapy, speech therapy , child life, etc. Our goal is to make sure on the front end that we know what she needs to fully recover from surgery and to be her best. We know that you can not just treat a brain tumor, you have the treat the whole child and the family.
 
The first part of therapy is Radiation Therapy which is 6 weeks (Monday through Friday) and it is given outpatient. If she needs any therapy post surgery then we will set that up during this time. We also have the option of providing school assistance for her while she is here through our school program. They will work with the local school system to set up her curriculum here to keep her on task while she is here. I will set up a consultation with our school program coordinator for the family to discuss the option and decide if they want to pursue that. Once Radiation is complete, we will repeat her imaging prior to her going home for an approx. 3 week break. When she returns, she will be here for the 4 months of chemotherapy with stem cell transplant. I can discuss this process over the phone with the family if they would like more details on how this works. Once therapy is complete, she will have end of treatment imaging then she will come back every 3 months for follow up which is usually a 3 day stay.
 
Housing is up to a total of four people including Kayla. We leave it up to the family to decide who the other three people are and they can swap out if they need to during her treatment. We will also provide meal tickets for Kayla and one parent for the duration of their stay vs. a Kroger card to purchase grocery items if they would like to cook at the Housing facilities vs. eating here. We will cover the flights for Kayla and one parent for round trip flights for each visit here. Patient services will go into more detail about these things when they arrive.


Tabitha told Donna that she sees so many families call in interested only to find this all, and I quote, "so inconvenient". REALLY??? None of this has been convenient! What parent wouldn't travel the earth in search of what might give their child the best chance at survival? There isn't anything we wouldn't do. Yes, it will be hard. Yes, it will be inconvenient. Yes, we will pretty much lose our incomes. Yes, we will FIGHT and figure it all out. That little girl is worth whatever it takes.

So, that was just my morning! I told you it was a productive day. Later in the afternoon, we took a drive down to Terra Linda Pediatrics to see some of our most favorite people in the world! We needed to have Kayla's sutures removed from where her drain was stitched in at the top of her head. She was a trooper. I think she is taking the pain well considering. She is at her tiny wits end. It's a good thing she is finished w/ surgery as we know it.  We had a nice photo-op with Dr. Yamaguchi and Sunny! God we love them! This office has become like family to us. I have to say, that one of the most amazing things about Dr. Yamaguchi is that he has never once doubted my mothers intuition. If it weren't for him listening to me and trusting me, we might have had a very different outcome here. I keep reading and hearing the sad stories of doctors ignoring the symptoms and chalking it up to different things. He expedited every single appointment. We wept in his arms the day we found out. We know that soon we will be back for "normal" check ups. We love you guys!
 Doesn't Kayla look THRILLED here? She was NOT happy about having those stitches removed. They did not tickle at all like Maggie had told her! Let's do a "re-take" after all of this, ok?

How is Anthony? well, he is doing great! We are so lucky to have such a wonderful team of teachers, friends and families all keeping things normal for him. Here is one of the reasons I LOVE Karen Beckmann - one of Anthony's amazing teachers (another angel):

What about Christmas? Yes, we will be in Tennessee. He will FOR SURE be with us for Christmas. From what Tabitha told Donna, that is the place to be at that time of year. Special treatment galore. All the celebs come out and bring surprises for the kids. I will make sure to take lots of pics, don't worry. I just hope Kayla smiles in those. Sheeeesh.




The agenda for tomorrow:
We have a big appointment at 9am back at UCSF to get the entire pathology report. We only have 95% of it. It won't change the treatment or the diagnosis. We need a complete copy to send to St. Judes along w/ all her records and MRI discs. So, it's off to bed for me in a few.


Good Night. BIG HUGS!!!

~Momma Bear


Sunday, November 27, 2011

A gentle haircut

Tonight Kayla asked for a haircut. Simple enough. Asking isn't at all out of the ordinary in this house. But tonight, I knew it would be a hard haircut to do. Her reasoning was completely legitimate. It's a pain to wash right now between all of the stitches both on the back of her head and by her bangs. Kayla said, "Mom, it's time for a new look". Well... that had me by surprise. I turned the heat dish on outside to get it nice and toasty. Then I turned on her new Justin Bieber CD - "Under the Mistletoe". Anything for Kayla right now. Dad and I stacked 4 or 5 pillows up on the chair so she could lay back flat. It still wasn't high enough so I just had Den hold her in his arms. She still has a ton of glue in her hair. I don't know what they used in that operating room, but even after my REALLY thorough scrubbing there was STILL blood and glue residue in her hair. I couldn't help but think that soon enough the glue and all of it would be gone. I took my time washing and conditioning it. In the back of my mind I kept thinking, maybe this is the perfect opportunity to bring up the next phase in all of this...

We went over to the chair and I gently combed and sectioned her hair being so careful of all of her sore areas. I stopped in-between each section to kiss her on the cheek. I asked her if she wanted me to cut her bangs short like she had when she was a kid? She told me that she had been growing them out for so long and she wasn't sure. So, I said to her that no matter what her hair looks or doesn't look like, her face would always be beautiful. That her eyes would still sparkle and her lips would still smile! And those teeth!!!! You can't forget about those teeth. She beamed and said, "Ok, just chop them off then! Give me some bangs so I can get this darn hair out of my eyes."



As I was cutting I took my time. I know it will grow back, but it will be a while..... And chances are it will come back totally different! So, this might be the last time I cut "this" hair. About 3/4 of the way in, there was this really pretty slow JB song called "Pray".  It's about finding strength. The chorus (for those non-Bieber households.. haha) "I close my eyes and I pray.  I close my eyes and I can see a better day".  For whatever reason, the lyrics got me. It doesn't take much (especially music) to just make me turn into a crier. I decided exactly how I was going to word this to Kayla. I told her that I was so glad that the doctor made the bump in her head go away. I said that the next step in all of this is to make sure it stays away. There will be a lot of different medicine. Maybe even travel by plane! She liked that idea. Then I said, most of the time the medicine makes your hair fall out. I told her that it always comes back. Sometimes and most often, it comes in different! She told me that if it comes in curly like Antonia's hair, she would be totally fine with it. I loved it. That was just the reassurance that I needed.

So, I sit here tonight wondering what news Monday will bring us. We have a LOT to do to get ready. We are researching second opinions for treatment facilities. Denny and I would fly to the moon if it meant a better chance...... Who wouldn't?! So, of course we had the whole weekend again to just wait and wait. But it's ok. God has a plan. We know it. So we just hung out and played and laughed and had a pretty ok time. Things are getting more and more normal. Tomorrow I am going to go to AAA and get a handicap placard so we can get discounted parking and bridge toll access for all of our trips to who knows where over the next year. On one hand I want it to go slow. On the other, it can't go fast enough! I am bummed I didn't take a better pic of her new short "do". It was hard to get her to smile b/c her neck was bothering her. When that pain sets in, it takes over. Anyway, the whole picture hasn't been painted for her yet, but she at least knows why she isn't going to school tomorrow.



Good night, we are retiring to the couch now! I feel like I climbed a small mountain.

XOXO

Saturday, November 26, 2011

Saturday

Today came and went way too quickly. It was exactly what we needed. We started the morning off by opening all the cards that we had received. Kayla read each and every one! It was a great way to start the morning off. She keeps asking why so many people are sending her things. Oh.... to be 7! She loved everything so so much! Thank you!!



Anthony found his own ways to amuse himself. Who needs presents, cards and balloons when you can have a box?

Oh.... to be 4! 

                                                                    

                                            Denny loves his pink "toe" socks!

We all got spoiled in the sock department. I realize what a feat it is to find bright and colorful socks in a size 13! Thank you for all the efforts out there. ;) Barbara, I got Anthony a Hex Bug from Target today with the gift card you sent him. Thank you for that! He loves it!

We spent a nice and relaxing day getting organized and researching.  The beautiful yellow and red leaves continued to fall outside reminding us constantly to just be grateful. Grateful for this time to spend as a family. We got caught up on some phone calls and just enjoyed every minute. Not too much to write about yet. Just so grateful to all of you out there following along with us and thinking about us and praying. Soon enough our journey will change and I will look back on these pictures longingly.

                                               Watching a movie on the iPad

I was sitting at my desk just staring at the back of that beautiful head. So many thoughts came into mind. I just wanted this snapshot for my memory. Once this nightmare is over, I want to take this "blog" and make it into a hardbound book for Kayla. Our diary of this amazingly brave 7 year old girl named Kayla Rose.

Friday, November 25, 2011

We're Home!

Home AT LAST!!!! I know our journey isn't even close to over, but I can say that for just tonight, things seem so wonderful and normal again! I got to the hospital this morning and just as I was signing in to be able to enter 7 Long, Denny called my cell and told me they had been discharged and we could be on our way! I couldn't believe it. Music to my ears!!!!

I took the drive home slow. I know Kayla's neck is still very stiff and sore. As we got closer and closer, Kayla started to get very excited. She just kept saying that she couldn't wait to see her kitty "Meow-Meow".  Even though I have driven the same route every day, today's drive home seemed to take decades!  Finally, we pulled in the driveway and there was a VERY sweet surprise waiting for us.
How sweet was this??? Kayla LOVED it. She really couldn't wait to get inside though!

Soon, Kayla's grandma (Neena) and grandpa (Bapa) came to drop off her dearly missed brother. Within seconds there were Nerf gun darts being shot off everywhere. There were clothes all over the floor. Things just seemed "normal". I refused to let my mind go there. I just want this weekend to be all about recovery. For all four of us. We need this time to decompress and process it all.  The kids (and dad) watched the new Ice Age movie and laughed and laughed. Hysterical laughs at many parts!  I just took it all in enjoying all the sounds that this house makes when life is present. It's been so quiet for so long. It just felt awesome! 

 Kayla had another surprise waiting for her in her room. What a special picture to have right above her bed. It's not the art I had pictured there, but now that our lives are forever changed, it's perfect!


This makes me smile!!!!

Tonight will be a night I cherish forever. Good night friends! Sweet dreams........



Me and Annie at my wedding in 2005
Hello! This is Allison Keech Sanka, Annie's cousin and a guest poster today. Annie and I grew up together when she lived in Pennsylvania - in fact, I actually babysat her from time to time! Thanks to the internet and Facebook, we have kept in touch and shared, laughed and marveled over our growing families. Annie and I have kids the same age, so the joy our children bring to our lives has been the topic of many emails and Facebook exchanges.


As all of you are, I am greatly inspired by Annie's positive view on life and her love for and dedication to her family. Even though I am across the country in Philadelphia, I wanted to help in some way, beyond sending words of encouragement and healing thoughts to Kayla. Many of you have also wondered how you can help.

I know from experience that having a seriously ill child strains your spirit and also your finances. Being the talented self-employed woman that she is, Annie will need to take a break from work to focus on Kayla's treatment. Without a doubt, this next piece of their journey brings added expenses as well as strain on their current ones. We can help her so she and Denny are not adding the worry of finances to their already heavy load.

I have set up a PayPal contribution button on the right of this blog. If you would like to send a monetary gift, simply click the button and follow the prompts of PayPal, a secure and trusted way to send money directly to the Dehnert family online via a credit card or directly (and securely) from your bank account. The greatest thing about this is the power in numbers. Gifts of $5, $10, $100 add up quickly to create a savings account to help them pay so many unforeseen expenses that come with this situation.

Annie, Denny, Kayla and Anthony are all in our hearts and minds. If you want to help, I welcome you to join me in doing so. Let's help Kayla and her family get through this!


Allison




Thursday, November 24, 2011

Almost home

Well, this was not a very traditional Thanksgiving this year. But, despite it all, it still felt wonderful. We had a very awesome day filled with lots of laughter. It helped to have the visitors we did. Kayla didn't sleep at all today which was a first! We were up, walking around, and even kicked the soccer ball in physical therapy for a while. Kayla got a special visit from Maggie & Audrey today. She was SO excited to teach them some math on the computer. I mean, priorities... right??? Notice how the girls are intently listening to every word. I love how in these pictures, you would never know what this little girl had just gone through only 7 days prior.