The Cold Never Bothered Her Anyway

There are currently only 26 places in the United States where breast cancer patients have the opportunity to use the Dignicap as part of their treatment. When Araella began treatment three weeks ago, there were only 8 places. Rae believes that every patient, everywhere, should have the option to use it - and I agree.

The Dignicap does make treatment a little longer… Here is a snapshot of Infusion day round 2: Rae was scheduled to begin treatment at 8:30 this morning. At 8:45 Araella and her nurse began by going to the bathroom and saturating Rae's hair and scalp. 

By 9:00 Araella was in the chair with the pre-medications being infused through her port.  The silicone cap was placed on her wet head and plugged into the machine to begin cooling. It takes time to "fit" the cap to Araella's head because there are only four sizes. For about 20 minutes two nurses, myself, and Araella all worked on getting a tight fit. You can see in the pictures that small pieces of material are used between the silicone layer and the neoprene top layer.  The top layer has three velcro straps that go around her head (front, crown and back) and one that goes under her chin.  That strap is particularly uncomfortable!  Araella has to pull it down to swallow. (Perhaps she will help to figure out a better design someday.) In the meanwhile, her nurse is impressed with Araella's tolerance to keep the chin strap tight the entire time. 

The Dignicap has to cool the patient's head for one hour before chemotherapy begins. So, we waited until 10:00 before infusion of the first chemotherapy medication began.  Araella has four medications, each of which takes about one hour to infuse. It was 2:25 pm when the chemotherapy was complete. Then, the Dignicap had to keep her head cold for two additional hours while the medication circulates through her body. Keep in mind that all day long Araella was drinking water…  

The Dignicap temperature never drops below freezing.  However, it is cold enough that Araella's head was numb after about 20 minutes.  Being numb keeps her relatively comfortable because she can't really feel that her head is cold. The exception to that is when she disconnects from the machine to go to the bathroom. During those minutes her head can warm up enough that she feels cold again for a short time. We have a good system of getting her to the bathroom and back quickly and then bundling her up again.  

At 4:25 this afternoon, the machine beeped and Rae called for her nurse to disconnect everything. Woohoo! When the cap was removed a few ice crystal on her hair were revealed but melted quickly. It was another long day that was completely worth it because Araella walked away with hope and dignity.

Araella's Dignicap treatments are not covered by insurance.  Each session costs $450.00. Our hearts are overflowing with appreciation for the generous friends who gave to make this possible.

Thankful for a heated seat, warm blankets, and prayers that covered her all day - Psalm 91

The Dignicap machine is too big for a regular room, so Rae is in a more common area, but she loves the view!
(and the company from friends on social media)

There could be another patient attached to the machine on the opposite side, however no one was.
If you zoom in, the green cap on the right reads 1.9˚C in back and 3.2˚C on top.
#RaeStrong indeed!!

Click the link if you would like more information on the DIGNICAP.

Sleeping Beauty

Let me begin by saying that from the time Araella was three weeks old until she was three years old, she slept 16 hours a day. If school hadn't interfered with her sleep schedule, she would probably still be sleeping 16 hours a day! Needless to say, we didn't make it to our 6:15 appointment this morning.

Thankfully, her appointments were able to be rearranged and her future appointments have already been scheduled to begin later in the morning. As we moved from appointment to appointment today, a few people believed that Araella was a new patient who had not yet had chemotherapy - a true testament to the power of her "mind over matter" attitude and her unshakable faith!




Araella had a PowerPort surgically placed beneath her collarbone today. It will eliminate the use of picc lines for infusions and needles for drawing blood. Waking up after the procedure was a struggle, but she ate dinner and reported for her vitamin C infusion where we are now. The infusion is two hours and Araella was sound asleep after 20 minutes.


When we get back to the hotel room, every card and every gift of encouragement that she could fit into her suitcase await her. She has experienced so much joy from your kindness and so much peace from your prayers. Please join us in praying for another healing treatment tomorrow. Araella's prayer is simple, "Infuse within me Your will."

Rae Reflections

After meeting some wonderful women at a Look Good Feel Better session sponsored by the American Cancer Society on Tuesday, Araella ruefully shared, "They didn't know about the DigniCap. Not one of them had heard of it. I want everyone to know. One lady is getting the same chemotherapy treatment as I am and she didn't have any hair." 

Araella was thrilled about the gift of makeup that was bestowed to each of the participants… and she was humbled by not having the need to cover up the side effects that her comrades are experiencing. She walked away from the session with a resolute determination to quell and conquer the side effects of round two. Practical advice such as how to consume a gallon of water the day of treatment, priming her body with a diet that supports a healthy immune system, naturopathic support and the intercessory prayers of so many have her feeling equipped for the battle.  

A few things that will make round two different from round one: 

*The infusion will be through a port (placed surgically on 9/26) instead of a picc line.

*Araella has elected to try a vitamin C infusion on 9/26 to counteract the side effect of fatigue following chemotherapy.

*The infusion and DigniCap treatment time given on 9/27 will be about 8 hours instead of 10 because less time will be needed to watch for reactions and because less Perjeta will be given.  (This is still a LONG day! *sigh* "I am not looking forward to just sitting there for 8 hours.")

And the last random reflection for this post was quipped by Rae last night in the middle of a Qwixx game, "It's squishy and normal. I can't feel it anymore at all." Mom and I looked at each other with wide smiling eyes but didn't have time to react other than that, because Araella picked up the dice and tossed them.  

1. After I took this picture, the other participants chuckled and I explained that I had to capture every moment =]

2. When I walked out of LGH to go to The Living Room, God was smiling.

3. Last Tuesday after The Living Room, we went to McDonalds and I couldn't order anything, so I came prepared this time with home made beef jerky and gluten free pretzels. They chucked too - I am making people laugh a lot lately!

Plans Change

As you all know, Araella's plans to go to college this year came to a screeching halt a few weeks ago.

Plans change.

This weekend another plan changed… A friend of Araella's had planned on shaving her head - with Araella or in support of Araella.  One way or another, that was her plan because Araella could have faced the side effect of losing her hair this week. Guess what?!

Plans changed!  

Instead of shaving their heads together, they laughed and painted and juiced and worshipped together. Araella got to spend a little time on a college campus and I got to do a little college student laundry =D

This year hasn't turned out the way we planned.  Not at all.  But God knows the plans for our future and they are good and full of hope! (Jeremiah 29:11)

Alyssa and Araella at UPRISE

Araella and Alyssa at SHIP
This picture was taken for me because I was so sad about not being able
 to take a picture of Araella on her college dorm bed four weeks ago…
A resilient reminder that in spite of changed plans,
joy still abounds!

Araella's Answers

What does it feel like to have cancer?

If this is how it feels to have cancer, I feel pretty good. I don’t know if I have ever felt better in my whole life! I have never felt healthier actually. I think because of all of the good food and prayers. I feel great Mom. I got a little frustrated last week when my mind wanted to do stuff and my body was like “naaaaw.” Chemo made me feel like my body wasn’t my own. But I truly believe it did not have an effect on me other than in the spot where it needs to be. It is mind over matter and I think I can even overcome the tiredness next time if people pray for that.  

What does it feel like to be held up in prayer by so many people?

I have never felt more loved in all my life. It feels cool. Like I am walking on sunshine (she starts to dance). I don’t know how to explain it. It’s indescribable. I think it is God working through the prayers. I have never felt this happy. It doesn’t make sense to be happy when I have cancer, but I am. Everything is the same other than the diagnosis. So, it has to be the prayers.

I just trust that everything is going to be ok, no matter what that is.  

Linked here is the song that Tenth Avenue North just released. "I Have This Hope" speaks to what Araella (and I) have been experiencing. Thank you again for all of your prayers!

Aviator sunglasses as promised =] 

Rae's in the Sun!

Day 7 was the turn around day for Araella. A few side effects were still trying to throw her off course, but she was able paint and socialize with visitors (who were adorned in masks). Her energy level didn't allow her to move around continuously, however she finally made it outside with Sukee and enjoyed some stationary vitamin D therapy. 

Day 8 was the BEST day so far! Araella was able to get outside and walk Sukee… Actually, now that I think about it, once out of bed this morning she was up all day =]  Sukee had a marvelous day too (even received her own card in the mail!) It seems their relationship is synchronous as Rae and Sukee each had an extra dose of spunkiness all day long.

Araella took her time opening the mail and soaked in the joy that each delivery bestowed. She will go to sleep tonight feeling absolutely showered in support and love. The affirmation that people are praying for her continues to comfort her. I am not sure how to thank everyone who has reached out through written words and gifts to touch us this week. I am discovering postal embraces are as nourishing as hugs.
                                                       

September 12  

September 11

Yes, Araella is wearing the same shorts two days in a row. It made her laugh and we hope you chuckle too =D

Tomorrow's goals: washing her hair (for the first time since chemotherapy) and going out in public protected from germs (her nurse said, "Go have fun - you're just a kid, but wear a mask if you can tolerate it.")

Rae's also in the Son <3 

A little better than yesterday =]

Araella is attempting to recover from her first chemotherapy treatment 6 days ago. The past two days have been the most difficult and she is anxiously awaiting the hour that she starts to feel more like herself. Her spirit remains strong but her body feels weak. This is frustrating to her, however I  have yet to see her without a smile. If you would like to follow her encouraging story, she has been posting updates on instagram @raeofsunshine__

Some good news is that for 2 days following treatment, Araella could feel the tumor shrinking (and she can no longer feel the lymph nodes that were affected!). Another piece of good news is that the side effect of light sensitivity and eye irritation seems to have been resolved and hopefully will not be an issue next time. When her new aviator prescription sunglasses arrive, I will post a picture =]  

We return to CTCA on September 25th. Araella is scheduled to have port placement surgery on the 26th along with some other appointments including physical therapy, survivorship and a vitamin C insfusion. On the 27th she will have another dignicap/chemotherapy infusion (8+ hours). Oh, another piece of good news is that Araella has not lost one hair that we have seen!!!

Headed home the day after treatment

Card #1 from our mailbox

We Are Not Alone

The difficult thing about today was seeing Araella try to rise above the frustration of her body not being as strong as her spirit. She just wanted to get up and clean her room, play with Sukee, paint… but she couldn't. She tried… but she just couldn't find the physical strength. She kept asking me when she would feel better and I kept telling her, "Tomorrow." With that she would smile and say, "Ok." I am praying that tomorrow she wakes up with renewed strength.

Some wonderful things about today were the cards that came in the mail (No bills! Woohoo!!!) and the vegetable soup and blueberry oatmeal muffins that were delivered. Each note and gesture, large or small, truly lifts Araella's spirit - and mine. Thank you. Also, Araella is now seeing a little more clearly. The chemotherapy has caused enough eye sensitivity that she has stopped wearing her contacts for a while… we updated lenses in her frames and ordered some sunglasses that she won't be embarrassed to wear =]  Hopefully, the combination of more physical strength and prescription aviator sunglasses will allow her to be outdoors with Sukee again soon.

A few friends who prefer not to use social media requested that I start a medical update page.  After looking at different ways to do that I decided a blog might meet that request and be therapeutic for me. As a single parent, I have gone through seasons feeling alone.  But this season, although the most treacherous, I feel safe because we are in the midst of a caring village.  One might even say we are in the midst of a mighty army!

Sweet dreams everyone <3
More battles will be fought and won tomorrow.

Your Prayers are Powerful!

Thank you for holding my Araella in your thoughts and prayers.  She has been resilient and strong since this journey began on August 16.  Stronger than I could have ever imagined.  In less than three weeks she transitioned from being ready to begin her freshman year at WU to being ready to face chemotherapy. And I have gone from being at the brink of a personal metamorphosis to strengthening our cocoon.

Yesterday, despite feeling fatigued and uncomfortable following the chemotherapy treatment 5 days ago, Araella posted another positive image and pronouncement:

Wouldn't be able to do this without Him

Matthew 19:26 

Greater is He that is in Araella, than he that is in the world!  That is for sure!   Please continue to pray for her sweet spirit to be protected and filled to over flowing with peace and joy <3