A Very Important Update From Dad

So today was the first "late" day that we have had since we have been back in Memphis. We weren't due back at the hospital till 830 am to meet the social worker for just a consultation. But as it turns out the social worker that had been assigned to us is on an extended sick leave. Additionally the social workers replacement is on a temporary sick leave. Hence, no social worker showed up to meet us this am. Not that big a deal considering I didn't need the extra zzzzzzzzs anyway.

Next up we had a clinic appointment for clearance for chemo at 9:30. The clinic was PACKED! I believe we got in sometime around 10:30. So we were already an hour late and we just started our day.  I was really pleased to get some burning questions I needed answered regarding treatments and also hearing back that all her scans (brain and spine MRI, Lp fluid check, urine culture, blood work, urine sample, nuclear medicine check, pulmonary, audiology, psychology, physical) came back clean. You may imagine that this is a given but nothing truly is EVER a given when it comes to cancer. Just a note, this does not mean we are good to go. It only means that we continue with our plan of attack. If we were to end her treatment now, her chance at remission is 65%. Chemo will give her an additional 20% chance! So, that is a no-brainer. I got some one on one time with Gajjar to also ask him some questions about alternative treatments that I had been hearing about and his personal take on them. One of our burning questions was if there was  any possibility of cancer cells attaching to the healthy cells that Kayla is getting from her harvest. I was relieved to hear his explanation of how that won't happen for a number of reasons. One is because the type Kayla has is brain cancer and the transplant is going to be delivered into her bone marrow, it doesn't involve her brain at all. The problem with researching on the Internet is that you WILL find misleading info that will scare you. Somehow, somewhere, it happened to someone. There is always a chance of things happening. But what is more important is the findings that research has backed up, time and time again. I can only imagine how many of these questions that he has to answer in a day for his patients and judging by the sheer amount of patients that E clinic has running through there on the daily that must get old FAST. I have to say that in all fairness, he took his time and made sure to lay it out for me so that I could understand it but also didn't "dumb it down" for me either. There is a reason that he is the foremost expert on this particular type of cancer. He has a way of really calming the nerves, if there are any. God love him for that!

Once we left there we had to rambo over to B clinic(which will be taking over for E clinic) to meet their nutritionist. This was an extremely informative meeting and I was literally looking forward to it all week. Diet has always been tricky with Kayla because of her allergies to citrus and eggs. Add on to that her dislikes of smells and some tastes from radiation and the specific dietary requirements for a chemo patient and it really can hinder your options considerably. I had heard that she was not allowed any raw vegetables, only limited fruits, a special kind of pepper, only fresh food that had sat out no longer than 20 minutes, and very limited processed foods. But to my surprise and relief, Kayla is really only on a limited amount of restrictions with her diet while receiving chemo. She can have raw vegetables as long as they are washed and peeled. She can have any fruit under the same constraints. It is preferred that she eat only fresh food but it is not always required. She can eat a number of processed foods. The only thing that rang true was indeed the ground black pepper (very important, the wrong type of pepper can kill her, who knew that there were so many kinds of pepper, I mean REALLY?). She needs to stay away from raw or uncooked eggs, raw dairy, tea, undercooked meats, hot dogs and most lunch meats. This list really is not that bad, for the most part she would do that anyway, as we all would. The reason I found out that she can do this is because she is receiving an autologous transplant (basically cells collected from her own blood). Some cancer patients (mainly leukemia patients) do not have the option to do this because they cannot collect healthy cells from their own blood. Just one more of the many blessings that Kayla has received in her battle with this.

We took a tour of the chemo floor yesterday and it is OUTSTANDING! Receiving chemo is never ideal but St Judes has gone to great lengths to ensure that your experience is the best that it can be, a true home away from home feel, but an emphasis on decontamination. Kayla will have her OWN room, with a personal bathroom that can only be used by her. This is connected to a parents room that is completely separate with its OWN personal bathroom and desk plus living quarters. There is a playroom for the kids and a lounge for the adults. There is an isolated PT room for the kids so they stay physical. There is even a laundry room. Each room is light and bright and FULL of life! The kids are allowed to decorate their windows with a special paint during their stay. Anything they can do they will, but they still have rules. Patients are not allowed to leave the chemo floor unless they are receiving a procedure elsewhere. Anything they take with them must be able to be washed and dried EVERY single day to limit infections. Visitors for patients cannot be under the age of 7 (poor Anthony cannot come in!) and must be screened upon EVERY time that they reenter the room (they can come and go as they please though). Children also can only use their own bathroom and are not allowed in their parents space. They really try to make sure that you have limited all infection. And they do try to accommodate in some unique ways. Even though young visitors can't enter they are given walkie talkies from the other side of the see through "fish bowl" so that they can stay in touch. How cool is that? They truly go out of their way to keep the family environment and to continue a pattern of love, life, and adventure. This should be considered one of the true wonders of the world! I have no doubt that this is the place where we belong. The only thing that will make it complete is when we have you and aj back where you belong, with us! Love and miss you guys!

Kayla's Room

Parent's Lounge - View 1

Parent's laundry room

Another view of the room

Kid's play room

Parents lounge -View 2

The "fishbowl"

Parent's Bath

Kayla's bath

And our day finished with some fun at Physical Therapy

*bloggers note. I am sorry these pics are out of order. I got lazy! :)

Up too early

It was 4am and I couldn't sleep. My head was spinning with all of the things going on. There is nothing worse then not being able to sleep when you know you need it and have the time. I kept thinking about how soon I won't have the luxury of a quiet room and a comfortable bed to sleep in. The sound of that hepa-filter just buzzing away constantly. I kept trying to get myself to relax and sleep a little longer. It didn't work. So, I woke up. I texted Denny to see how things were going.

I was so happy to wake up to a picture of our car!!!

It made it!!! Aside from a LOT of dirt, Denny claims it doesn't have many bruises from the trip. Probably hard to tell if it's that dirty, but who cares right? It's supposed to rain a lot the next few days in Memphis, so it will have a rain bath :)

 The happiest news is that all of the belongings inside are still there. Hooray!!! Of course nothing goes without extra work for Denny. Apparently, the driver called him at 11:00pm last night to ask for the address again because he accidentally erased the text. Nice. Then he texted at 12:00am asking for the address on N. Mclean (where they were meeting.. around the corner) for his GPS. At 6am Denny watched as he drove past the directions he clearly gave him. He called the driver and told him to make a loop and come back so the 18-wheeler could be guided  where it needed to go. But, it's there. Happily parked and ready to tote around it's family.

Kayla has had her pulmonary test already this morning. She cried a lot I was told b/c she didn't understand what it was for. It wasn't painful, just hard to explain to her what and why.

Looking at this picture makes ME want to cry too. Great job Kayla! Stay strong...

Right now, Denny and Kayla are in E clinic awaiting the results of the MRI's and their clearance.

Update:

All seems ok w/ MRI. Dori can't read them but assured Denny that if there was something to worry about, we would already know

That was one of the most stressful moments I have had in a long time. That waiting was AGONY. How am I going to handle check ups every 3 months??? 

While I was sitting here waiting in pure agony, it is good to know that Denny and Kayla were having fun.... I am NOT as strong without Denny and Kayla by my side. I am really really trying. This is beyond painful. I know I'll be better when I'm there.

Having fun playing w/ tegaderm strips

Please pray for strength and another NED (no evidence of disease) as Kayla is about to go in for her lumbar puncture soon...

And we have an address!

I know... faster then I could have even imagined! Only 2 days? HOW did we luck out like this? Just good timing I guess. Let's hope that we have lots of lucky strokes like this.

Today Denny got a call that there was a room available at Target House 1 and to be there at 3:00 to check in.  Kayla and Denny got to settle into their new digs today!!! I am SO happy for them. What a huge relief. Our new address is:

 Denny, Annie, Kayla & Anthony Dehnert

Target House 1
1811 Poplar Ave. #505

Memphis, TN 38104

Oddly enough, we are back on the 5th floor, just across the hall. Well, we are a little closer to the laundry room which will be a bonus. It is right next to the elevator though so we are hoping it isn't too noisy. We heard stories from friends we met who were on the 4th floor next to it. Once you are checked in, there is no switching. So we are where we are. Den said so far he hasn't noticed any noises. Most of everything is unpacked.

Our second bit of good news is that our car will arrive tomorrow morning. Not so good news, Den is expecting to hear from the driver at 5:45am. Poor guy can't catch a break! They aren't supposed to head into the hospital until 8:00... so much for having a relaxing-ish morning. I got the call tonight from St. Jude that Thursday they are to arrive at 6am at rehab services. What fun! NOT.  Let me backtrack... our car will be there tomorrow!!!!!! HOORAY!!!! This is fantastic. Denny is going to go to Kroger tomorrow to stock up on food after they finish their day. For now, they will eat in the cafeteria. This brings me to my next not as exciting update. 

Kayla will be NPO for tomorrow. (that means no food after midnight for our new blog readers) It's protocol if you are to be sedated. She has a lumbar puncture at 10:15. And for that, you happily to go to sleep. :(   So, besides the lumbar puncture, Kayla has Psychiatric testing (which takes hours) and lung testing.  Denny is hoping Kayla will get to make up for the missed meal when she wakes up.

Today was busy! There were more early tests, Kayla's Brain MRI, lots more food, running back and forth for that dreadful urine test, and also for blood tests. Denny was probably wishing they had roller skates today.  When they finally finished, they happily got to check out of the Grizzly House and head over to the apartment to start unpacking and settling in. Kayla was exhausted and took a nap. Here are some pictures that Den sent to me. It's basically the same apartment, but flipped. 

Night Night sweetie!

Living Room. Oh... I don't miss that horrid couch. :(

Our new view from the living room window.

kitchen

Our "Master" isn't really much of a master is it?

After Kayla's cat nap minus the cat, they headed over to Target House II for Dinner! Great timing. Den happily reported that kayla had a generous helping of Mac n Cheese and two helpings of Green Beans. (I hope they were drenched in butter...) They got to get caught up with Laurie, Mike and Connor tonight too! Also, they saw Damaris and Angel. (the friends we made right before we had the break in between treatments)

I see daddy is having his sweet tea fix. Ahhhhhh! :)

We hope to get the MRI results back tomorrow during the 9am clearance visit. If we get those, I will at least post those asap. I know it's another long and horrendous day that is set to end at 4:30 for Den and Kayla. Once they finish up, it's off to the grocery store to buy everything all over again. Ugh. This is where I wish I was there to help! I know he's got it covered, but still. We work so well together. It's strange. We have realized now how much better this family does when all the forces are together. We do make a great team. 

It was a hard and emotional day for me. I didn't think it would so hard for me to be out of the loop and feeling so helpless. Plus, it makes updating this blog a LOT harder. I just wish I was there to be a second set of eyes, ears, and hands right now. Soon enough........ Anthony is bored. He misses Kayla like crazy. So do I. 

 Good night everyone! Thank you again for all the support!!! Keep those prayers and well wishes coming! So far, they are working!!!!!!!  

Watching Kung Fu Panda 2 and EATING! (good girl!!)

 Mommy loves you sweet angel. Kisses..............

Long first day back

It is with emotional exhaustion that I share this update with you tonight. I know so many people love or have grown to love Kayla. We thank you all for being such an important part in this crazy journey. It was a very long day for Dad and Kayla. I asked Denny if he could summarize their day so that I could accurately describe it all here. Not being there is hard for me in SO many ways as you all can imagine.

Denny was a rockstar. Not that I expected any less.... He is such a great daddy. He sent me an email so I could update  you all here. As you can imagine, he is so busy there and short a hand (me). So responding the same thing over and over in texts is not what he needs to be focused on. As much as he loves everyone and appreciates their concern so much! You will see from this email just how little time he had.

So we had a lot on our schedule today.  First off we had to be to the hospital for MRI check in at 6:45. Normally this wouldn't be that bad except for the time.  But when you are at Grizzly house there is no kitchen and even their continental style breakfast isn't open that early. So we had no food and no way of getting food before our early appointment.  We checked in first and then rushed to the cafeteria that opened at 7 to get Kayla her bowl of grits before her long MRI.  We got back by 7:05 but we still were rushed in before Kayla even got a bite of her grits.  They wanted her on the table by 7:15. I was on stand by while they brought her back.  Around 8:30, I was wondering where they were at with it all because we were already due at our next appointment in B clinic.  I asked what had happened and they said that she would be done in 5 mins or so because she had trouble keeping still (which we found out was because the poor thing had to pee).  She came out by 9:15.  

We rushed to B clinic, where they called us in almost immediately as Kayla was playing catch up to eat her breakfast.  They proceeded to go over the transition from E clinic to B clinic and that this was the primary reason for all the testing before chemo.  Step by step they walked us through it.

I asked them questions regarding Aj and how the rules applied to sleeping arrangements and such.  The detail that we did not realize is that while we are in patient, Aj is not even allowed on the floor to see his sister. Other than patients, no one under the age of 7 is allowed. There are common areas that we can meet him, but as far as her room is concerned it will be off limits. We have to follow up with many more such rules that will be given to us regarding nutrition and what we can expect both in patient and post procedure instructions and how it will all work.

They checked Kayla's blood oxygen level and swabbed her nose. These are things they will do before every chemo treatment.  They exercise every precaution to ensure that her body can handle what is being given to it and can tolerate it.  Additionally, she will get an EKG, and has to do urine samples and a urine culture to ensure this, every time.   For those that don't know what a culture is it begins with a sterile swab of Kayla's undercarriage.  One sterile gauze coated in sterile water, one sterile gauze coated in betadine,  and one last gauze coated in sterile water.  Then she gets to pee in the white hat under the toilet bowl.  This produces a sterile baseline for them to work off of.  Next I need to collect her urine for the next 24 hours and refrigerate it the entire time. Once we arrive at the hospital for our next day full of appointments, I will first  need to drop it off at assessment triage where they put it on ice until it is done being collected.  I need to come back every time that she needs to pee throughout the day to continue collecting it while still going to our appointments. This is done to check the drop in her creatinine levels over time to check how her kidneys process it.  She also does double the bloodwork that has usually been necessary during the course of radiation.  Something like 10 vials total now.  Thankfully this doesn't faze her and I just make sure that she drinks lots of apple juice to keep her blood sugar up. My orders, not theirs.  

PT (physical therapy) was last on the agenda, and they said that she is doing great!  They just want to work with her on her balance and some toe to toe work.  Chemo can effect balance and some of the control in her hands and feet which has gotten so much better since going home. They said that they will do their best to keep her that way.  Kayla did manage some fun for the day, just despite the workload.  She did some painting of Kramer for the volunteers at C clinic after her EKG while I got her some soup (that she wolfed down) from the cafeteria. 

 On our way to do bloodwork we ran into Amy and Ashley from childlife (her two favorites)! It was great timing. We got a mini-break if you will while they got her to put her stamp on one of the many art projects that childlife is working on in the lobby throughout the week.  No surprise that Kayla not only did great work but was also swarmed by the photographers while she did it(have you seen this kid?  Those eyelashes deserve their own pictorial!).  It was great to see her doing something she enjoyed in this long day. 
 

Guess which drawing is hers? (ok... she signed her name!)

It was great to see her doing something she enjoyed in this long day.  Once we left the hospital we headed to target house to get the essential toiletries we left behind and Kayla's beloved art supplies and blanky.  She also could not wait to get her healing blanket(she said bc it makes her get better faster).  We saw some familiar faces that greeted us with affection. They led us down to storage so we could ransack our supplies and then head off to catch the shuttle. SO glad our car is on it's way! I also managed to reconnect with some of our favorite families that we have met here: Laurie(Connor's mom) and Sherri(Peyton's grandma)by text.  I can't wait till we get to see each other in person next!  Also my knitting circle is returning to Target House 2 on Friday. So, we will see if we can stop in to see my "ladies".  

Long day. Now, we are going to get some dinner before her dressing needs to be changed and she gets a much needed bath.  She took a cat nap today, minus the cat, but who can blame her?  More to come as it comes to me.  Love and miss my family that isn't with me and all we left behind already!  Talk to you soon. 

Den

Wow, is anyone else exhausted after just reading that? I am! And poor Den didn't sleep a wink (again). He was so worried about his alarm not going off this morning. I sure hope he has some serious shut eye. Instead of sleeping while Kayla did, he sent me that long email. Thank you Den for putting it into an email. There is no way I would have remembered all of that!  I know tomorrow is another long day for you both. Another 6:45am start time for her Brain MRI and other numerous appointments and tests.

We just heard that American Airlines had to make an emergency landing in Arkansas today! SO SO grateful they weren't on that flight! How scary!!
And I already hate to fly... lovely!

I promise to update everyone here. The next few days will be a lot like this... which is why Anthony is still home here with me. All is good. We are all just drained. Thank you all for your love, prayers and faithful support! 

I was about to sign off and then I found these...... These pictures were taken last year in March.  Look at how much things can change in the BLINK of an eye. I just had to share. You know me!

 See? Even when you "think" you are living a healthy lifestyle... you can be unlucky.

Being unlucky can't take away our spirit, our positivity, our outlook, our determination, our faith, our love for life, our gratefulness, or our sense of humor. We are LUCKY to have this family. Grateful for every day we get to spend it together. I am grateful for every breath she has and is taking. So happy to be able to share this message with all of you. I feel lucky.

Good night all!

In route to Tennessee... again.

AND THEY ARE OFF!!!

Tough nights sleep. Tough morning. I didn't expect Anthony or I to be so emotional since we will see them in a week! Anthony is having a rough day. He really misses them already... So do I!

On the bright side, it's a beautiful day to fly! The sun is shining. It's Sunday, so there weren't many cars on the road. Denny sent me the above photo so I could add it here and let everyone know they were about to board the plane. There will be a slight layover in Dallas at about 1:30pm (eastern standard time). Plenty of time to grab a bite to eat! Please pray they have a safe flight all the way through. I'm sure they will! 

Tonight, Denny and Kayla will have the St. Jude shuttle driver waiting for them in baggage claim. They will head over to the hospital to have Kayla's blood drawn for tests. Then they will finally head over to the Grizzly house for some MUCH needed zzzz's. It will be an early start in the morning. Kayla is scheduled for her first of 2 MRI's at 6:45 am. (that's 4:45am Cali time... OUCH)

Here are some pictures from some of the fun we have had this past week. We had a wonderful time spending quality time filled with laughter with our friends and family.

Who knew she would be so good at twister?

We had a pre-birthday celebration for Kayla's friends, Maggie & Audrey. They will be turning 6 the day Kayla gets admitted into the hospital for Chemo on the 14th. What a fun pre-party! Great memories....

                                        What a Ham. Look ma! I can do tricks!!! ;)

 Having fun at Claire's. It was a tea party! :)

 Meow Meow love

 Look at her GO! And she didn't think she could do it...

Luckily for us, Mrs. Boerio happened to be working in the classroom on a bright and sunny weekend day.

Of course our trip home wouldn't have been complete without numerous little amigo burritos from one of Kayla's favorite Novato restaurants, Tommy's Salsa. We can't thank you enough for all of the Love you have shown us... <3 <3 <3

Kayla and Maria. One of the sweetest people on the planet! 

**LOVE-Filled see you soon's**

This pic was taken right before we pulled out of the driveway this morning.  A very tearful good bye!  We will see you soon girls...  Promise. No one wants this over with faster!!!

Denny, I will miss you tonight. It will be hard sleeping knowing you are not at home. I promise to lock up tight. We will be thinking of you & Kayla at 4am tomorrow knowing you are heading in for a very long day. We love you. Thank you for taking such great care of our baby girl. You are the most incredible partner. I love you!!!