Friday, December 9, 2011

St. Judes - Day 3

This morning was a little better. Kayla woke up in a decent mood. She got a much better nights sleep, only waking up a couple of times briefly towards the morning. We got a nice early start since I turned the alarm sound up on my phone. I think I figured out what happened yesterday. There are these really loud fans that run all of the time throughout our little place. It must be part of their filtration system. Everything is so sterile. Anyway, it's nice white noise... but kind of loud. Yesterday, the child life specialist gave Kayla a really special gift. It's a bag filled with a necklace string, beads with the letters of her name, and a bead for each of the procedures she has been through so far. Every bead and every color represents something done at St. Judes. You start the necklace and tie it in a bow. You don't end it until the journey ends. You just keep adding beads after each thing completed. It's great incentive!!! Kayla got a LOT of beads today.

We headed downstairs into the main lobby area to wait for the shuttle. Kayla was NPO again (meaning no food before sedation) so Denny and I  had to sneak behind a wall to rotate eating a few bites of breakfast without doing it in front of Kayla and risking making her feel sad about not being able to eat anything. As we were sitting in the Grizzly Cafe (which is all basketball themed), Kayla asked us if we are on Vacation. I said, "honey, do you think we are on vacation?" She said, "well, even though we got to fly here... no!" We chuckled a little and just looked at her lovingly in agreement.

After we arrived at the hospital and did our normal check in w/ arm band and clearance. This will be the start of every single day (monday-friday).  Since she still had an IV in her hand, we assumed this blood draw would be easy. No pokes! Well, it wasn't that easy. They had to do another saline flush before getting the blood. When Donna did it last night, we pushed the saline soooo slowly so it wouldn't hurt. This morning, the nurse pushed it so fast. Poor kayla was screaming begging for her to stop. That set her off again. Then she yelled out, "THIS ISN'T A VACATION AT ALL".  Poor thing!  It was pretty hard to get her to calm down and breathe after that. She got the blood work done though, so that was good.

Next we took her upstairs to the RO Clinic (Radiology Oncology) for her Bone Age X-Ray. That was easy.  The child life specialist came and got us while we were waiting to take Kayla back for her next appointment and told us that we had to come out into the lobby. That there is an amazing instrumental Christmas concert going on right outside of the doors. They reassured us they would come and grab us if our names were called. So, we walked out into the lobby to listen. I don't know if it was just because of where we are or what we are going through right now, but this was the most gorgeous music I had ever heard in my life. There were bells, bongos, guitars and all kinds of instruments. It was so moving. I couldn't help but well up looking around at all the families all stroking their kids shoulders like I was, or some of the moms dancing with new born babies in their arms to the music. I couldn't help but just pause for a second and be so thankful for that moment with Kayla.

While we waited for her sedation to begin, the four of us walked down stairs to the Radiology department to meet her Radiation Doctor.  He won't be delivering the treatments to her, but he will be managing her care. His name is Dr. Pai. We really REALLY liked him. We talked about what to expect with Radiation Therapy. What the short-term effects might be and my main concern, what the long-term effects might possibly be.  Honestly (and we also expressed this with Dr. Pai) we don't expect Kayla to have any effects at all that can't be worked on in the future. We went over products that she is allowed to use on her skin and hair during treatment. Funny enough they recommended Johnson and Johnson's for her hair. Now really? You don't want to battle me on this one. That is one area "I" have done my research on. I explained that I will be continuing to use Original Sprout. It's free of anything and everything that could be dangerous, including hormone disruptors. He smiled and was impressed with our knowledge in nutrition and overall health. We explained that since her birth we have been so careful with all things involving our kids. We don't go to fast food places. They mostly (within control) only eat organic and we limit anything toxic in general. So, knowing what is about to happen to her and what will be purposely put into her body is really hard to swallow for us.

Before I knew it, Kayla was under sedation again and receiving her bone scan and simulation. We knew that the risks of them finding anything in her bone marrow was low, but still a possibility. The simulation was for the team to get the beams for radiation in the exact right location. They placed tiny permanent dots (tattoo's) on specific spots on her head so that every time she receives treatment, she will be lined up perfectly each and every time. It's a very precise measurement. It has to be 100% accurate. They also made a mold of her face while she was asleep. This is what will allow for pin-less radiation. She will comfortably lie face down with her face gently cradled in a comfortable pillow type thing (think massage table style). 

While Kayla was still under sedation, we met with the Pheresis Doctor. He will be in charge of harvesting her stem cells. This will take place on Tuesday.  Tuesday will be a BIG day.

After, we met with Dr. Hajjar (pronounced Ha-Jar) for the bone scan results. ALL looked great there. We signed all of the paperwork for the protocol aka her treatment plan.

Simultaneously, Denny had to meet Kayla in recovery from her sedation(yes, we actually had to be in two different places at once during the end of the day, I have no idea how a single parent would do that).  She was out of sorts so he had to take her back to our room while we finished our scheduled appointments.  
Later, Denny had to take Kayla back to the Hospital after waking up for the next phase (because she was too ticked off directly after to go then).  We have to give her harvest boosting medicine every day until Tuesday. Think fertility treatments... you give the mom shots to boost the egg numbers. This is like that except it isn't multiplying eggs, it's multiplying her stem cells for harvest. This will be used for her stem cell replacement. It will boost her immune system and help her recover during her doses of chemo in the future. It will be hard to get right now, but great for the future. 

I need to tie in Tuesday. I am so tired, I'm afraid that I'm not making sense. I hope I am! Sorry if I am confusing you. I'm going to break it down:

Tomorrow & Sunday we have nothing on our agenda except for going to the medicine room mid-day for the "stem cell booster shot".  Monday she also has this and probably a meeting w/ the nutritionist, child life specialist and "HOPEFULLY" physical Therapy. (they are booked until Tuesday, but we are pushing for Monday... she really needs it!)

Tuesday: Kayla will probably be admitted early, around 6:00 for sedation. A double lumen catheter and a femoral line. It will stay in place the entire time they harvest her cells. This should take around 5 or 6 hours. She won't be able to get out of the bed the whole time it's happening. BUT, she can eat. Hopefully they will be able to harvest all the cells they need for all the rounds of chemo. If not, then she will have to have it done a little longer on Wednesday morning.

Wednesday: They will do a practice run for radiation (no beams used). Along with who knows what other appointments.

Thursday: Radiation - Day 1. 

One thing we learned tonight is that we can't Skype! I am so bummed!!! I guess St. Judes has a protection on their wifi b/c it's a "kids" hospital. I get it... but I'm so bummed about that. Maybe when we finally get into the target house? I doubt it b/c it's still SJ property.

Ok, that's it for now. It's been another long long day. Kayla is doing good. Her pain is tolerable. We are giving her nothing but high-calorie foods to try and increase her weight. She was only 37 lbs this morning. She is tolerating all of this pretty well considering. We are SO happy to have a day to ourselves basically tomorrow. 

Here are a few pictures Donna took today when she got a chance to wander around a little that we wanted to add:
One of the many playrooms
Inside the chapel

 How is Anthony?
We talked to Anthony again tonight and he is doing fantastic! He had a great time playing at the park with Maggie and Audrey. At school, they surprised him with a truly AWESOME gift basket to keep him busy (and spoiled). Wow!!!! Thank you so much to all of you who made that happen today. It's incredible!!!!! I miss you and love you all so much.  Thank you to all of you for keeping us all in your prayers.  Ok, now these pictures say it all! LOVE HIM!!!!!!!!!

This is my favorite picture EVER!
Anthony lining up his loot

Ok, night night time for us!  Zzzzzzzzzzzzzzz...............


  1. Annie, you continue to amaze us with your detailed documentation describing EVERYTHING. It's like we're actually THERE. In one word: AWESOME! It's tough to feel connected during the day while we wait for the updates, and when I called you tonight (and you answered, thank goodness!) we felt complete reassurance that all was okay. It isn't easy being separated from you, Den, and Kayla, but it is worth the sacrifice knowing that she's in such good (GREAT!) hands. Rest well this weekend, you're all going to need it for the times ahead. Denny, Annie, and Kayla: We love you with all of our hearts! Continue to STAY STRONG!


    Neena & Baapaa

  2. It sounds like things are going quite well considering. We are all so glad to confirm that St Judes is the wonderful place we've all heard about and that everyone is taking awesome care of Kayla and you. It will be great when Anthony joins you shortly for Christmas. We will all make sure to document chapel for you with pictures like you are doing on your journey. It is heartwarming to continue to have the great test results coming in! All the best! Leslie, Keira, Randy & Cam

  3. Wiz, your spirit enraptures me each and every day! I could almost hear the music wafting above my desk and feel the tenderness of that tear fall down your beautiful face. Again you amaze me with your talents. OUCH poor Kayla, St. Jude's resort seemingly perfect in everyway, BUT not a vacation that's for sure! Tell her we will have that vacation when she kicks the C words you know what, NO SALINE! Johnson's and Johnson's HAHAHAHA! Yeah, not. AJ looks content with his loot, you think, that's so awesome. I'm hoping to see him Sunday :) Much love my dear, Jayna

  4. We are praying for your family!!! You are in good hands at St. Jude! Love, The Erickson Family

  5. Wow---amazing what is happening. You all are getting such top drawer care! The music concert
    must have been so special. Sorry to hear the flush
    did not go so well. We thank the Lord that Denny can be there with Kayla. I agree- can't imagine how a single parent does it.

    Such heart touching pictures-- have to keep the tissues handy.
    So glad to hear about AJ and the gift basket--that
    is wonderful.
    Praying for you all, each day.
    (PS--Donna, stay warm)
    Blessings to all of you,
    Dianne (Donna's Mom)

  6. keep strong Kayla do what you have to do to get back to novato!!! we miss you sooooooooooooo much at church.(gslc)