"Wherefore, O ye illumined youth, strive by night and by day to unravel the mysteries of the mind and spirit, and to grasp the secrets of the Day of God." Baha'u'llah
The last day of chemotherapy for the third session went okay. Jadan still felt nauseous but managed to eat a couple of breakfast burritos from McDonald’s. And what would life be like without hot picante sauce?
When it comes to food, if he wants it, we get it. We are never sure if something will work, especially since feeling sick has been so difficult this week.
It was exciting to reach the last day of treatment for round three. Knowing that he has two weeks off to recover and only one more week left – 5 DAYS! – is a relief. He’s got this!!!
From the start of coming to treatment, we noticed the office decor. There are flying pigs everywhere. We finally asked Amanda at the front desk about the meaning behind “when pigs fly!” She said all the pig art has been there for years—it was there when she started working. She also said that the patients absolutely love it. When patients come in, they laugh and remind her never to change it. I guess the pig art will change “when pigs fly!”.
Prayer for the last day of chemo:
O God, my God! Fill up for me the cup of detachment from all things, and in the assembly of Thy splendors and bestowals, rejoice me with the wine of loving Thee. Free me from the assaults of passion and desire, break off from me the shackles of this nether world, draw me with rapture unto Thy supernal realm, and refresh me amongst the handmaids with the breathing of Thy holiness.
O Lord, brighten Thou my face with the lights of Thy bestowals, light Thou mine eyes with beholding the signs of Thine all-subduing might; delight my heart with the glory of Thy knowledge that encompasseth all things, gladden Thou my soul with Thy soul-reviving tidings of great joy, O Thou King of this world and the Kingdom above, O Thou Lord of dominion and might, that I may spread abroad Thy signs and tokens, and proclaim Thy Cause, and promote Thy teachings, and serve Thy Law and exalt Thy Word.
Thou art, verily, the Powerful, the Ever-Giving, the Able, the Omnipotent.
Over the last week, Jadan’s strength returned, and his overall well-being improved. In preparation for the upcoming semester, we shopped at the UNM Bookstore and had lunch across the street at Frontier Restaurant. This started today, the same day we went back to chemo.
Once again, Subi was confused about why she couldn’t join us as we exited the car during drop-off. As she spent the day with Kevin, Jadan got settled into his chemo station as the nurse flushed the port and inserted the Huber needle, the needle that feeds medication into Jadan. Happily, Jadan remembered to apply his numbing cream to the skin over the port. There was no pain as the needle was inserted.
Going into the second chemo session, we figured he was at 95% and was ready to do whatever was needed to fully recover. On Monday, August 18, the nurse asked, “Any pain today?” and Jadan replied, “Nope. No pain at all.”
The usual routine followed: saline, anti-nausea meds, and the two cancer-killing drugs, etoposide and cisplatin. We continue to monitor his hearing to avoid side effects of hearing loss from the cisplatin. I am happy to report that no changes have occurred. It was also time to visit the cafeteria. Jadan continues to enjoy hashbrowns with salt during his treatments, especially when getting his steroid meds. The key is to get breakfast snacks before the cafeteria closes at 10 a.m. for an hour as they prep for lunch.
The remainder of Round #2: Day 1 of chemo went by fast. Jadan was finished by 1 p.m. with no unwanted issues. Once home, he started to feel the effects of the chemo: nausea, shakiness, and fatigue, which lasted the afternoon. It was challenging to find food that he was able to eat. Some of his cravings were tomatoes, miso, and sushi, which he enjoyed.
I was pleased to see he was feeling well enough to meet Subi and me at the park. The skies were filled with dynamic, moody clouds. Experiencing Albuquerque is like living in a beautifully created artwork. We were grateful for the cooler temperature and welcomed the possibility of rain.
Round #2: Day 1 Art: Prayer for Healing
Thy name is my healing, O my God, and remembrance of Thee is my remedy. Nearness to Thee is my hope, and love for Thee is my companion. Thy mercy to me is my healing and my succor in both this world and the world to come. Thou, verily, art the All-Bountiful, the All-Knowing, the All-Wise.
A needle applicator that is used to administer blood cell growth medication.
According to Dr. Purdy, Jadan’s oncologist, “Bone pain is good; it means you are making white blood cells.” Last Saturday, just before 4 p.m., Jadan’s robot shot successfully administered the medication that stimulates white blood cell growth. One of the side effects of this process is bone pain, which showed up today. So far, he is managing through the pain quite well. Jadan has also been continuing to do well with food, but has different cravings quite often. He has also been feeling strong enough to go on short walks, avoiding direct sunlight due to his medications being light sensitive. However, since Jadan is a walker and loves being outside, I am keeping a close eye on him.
Jadan had an excellent visit from Anya yesterday. She made him the most delicious apple pie infused with love – it even had a heart on top! Apple pie is one of Jadan’s favorite desserts, it couldn’t have been more thoughtful and yummy!
Anya started 5th grade today. Happy back to school, Anya! We are looking forward to the back-to-school picnic in a few weeks.
August 5th marked 6 months since Laurie’s death and 2 months since we learned of Jadan’s cancer. This is how we tell time these days. Our experience with loss and serious illness has redefined our relationship with time. In a way, our current reality feels familiar, like we’ve been here before…we have. And at the same time, we are living a new moment in time that unfolds daily, and as we continue to move through the pain of loss. Kulber-Ross and Kessler state, “The pain of loss is so intense, so heartbreaking, because in loving, we deeply connect with another human being, and grief is the reflection of the connection that has been lost,” which in turn becomes “the healing process that ultimately brings us comfort” as we embrace our love in experiencing the pain of loss. Essentially, if we “avoid the pain of loss,” we would need to “avoid the love and the life we shared” (On Grief and Grieving, p. 203). Another quote that resonates deeply is from ‘Abdu’l-Bahá. He states, ” To attain eternal happiness one must suffer. He who has reached the state of self-sacrifice has true joy” (Paris Talks, p. 178). Experiencing Jadan’s cancer journey so close to our experience with Laurie’s cancer journey is dreamlike. It is an opportunity to embrace the love found hidden within our grief in losing Laurie, and, at the same time, it strengthens our understanding of purpose and meaning, as we focus on healing and a full recovery for Jadan’s cancer.
According to this morning’s blood test results, Jadan’s white blood cell count looks good. Dr. Purdy is happy with how Jadan responds to the robot shot from this weekend. However, there was some not-so-good news also. One of the side effects of cisplatin is loss of hearing. Cisplatin is the key to curing Jadan’s cancer. Jadan has had light ringing in his ears a few times this week and noticed a slight change in his hearing that comes and goes. In light of this, Jadan will see an audiologist ASAP to test his hearing. Once we learn the results, we will know the following steps, which may include another medication that will require him to stay in the hospital for the duration of his August 18th week-long chemotherapy treatment. More to come on this new development. In the meantime, we are hopeful that his hearing has not been negatively affected and he can continue on his current treatment plan.
Your prayers and support are greatly appreciated. Thank you to all who sent cards filled with beautiful art, love, and encouragement. Words fall short in expressing our gratitude. I am inspired by Jadan’s courageous spirit and positive attitude. He is committed to being cancer-free and faces each challenge with his zestful smile and determined spirit.
Art inspired by the innate powers and qualities of youth, as stated by ‘Abdu’l-Bahá;
“Man’s life has its springtime and is endowed with marvelous glory. The period of youth is characterized by strength and vigor and stands out as the choicest time in human life. Therefore you should strive day and night so that endowed with heavenly strength, inspired with brilliant motives and aided by His celestial power and heavenly grace and confirmation, you may become the ornaments of the world of humanity, and preeminent among those who are initiated into true learning and the love of God. You must be distinguished amidst men by your sanctity and detachment, loftiness of purpose, magnanimity, determination, noble- mindedness, tenacity, the elevation of your aims and your spiritual qualities; that you may become the means of exaltation and glory for the Cause of God and the dawning places of His heavenly bestowals; that you may conduct yourselves in conformity with the counsels and exhortations of the Blessed Beauty—may my life be offered up for His loved ones—and by reflecting Baha’i qualities and attributes, you may stand out distinguished from others. ‘Abdu’l-Baha eagerly anticipates that each one of you may become even as a fearless lion moving in the pastures of human perfection and a musk-laden breeze wafting over the meads of virtue.”
One of our most significant take-aways from chemotherapy so far – Jadan and the steroid medication do not go well together. He has experienced dizziness from the moment he was given it on day 1. His first night’s sleep went okay until 2:40 am. After some time managing, now feeling well, he was able to return to bed only to wake up early for chemo day 2.
This morning was rough – chills, shakiness, and not feeling well.
Our job is to ensure that Jadan does not experience an allergic reaction to the meds. I checked his temperature—it was normal. We were good to head to treatment.
Jadan’s new best friend, Amanda, had a brand new friendship bracelet ready for Jadan during our check-in. Today’s message was spot on. Even though this morning was difficult, the day had significantly improved.
Once settled into his chair, Jadan told his nurse, pharmacist, and doctor how he felt. It was determined that he was not doing well with his steroid dosage, so the dexamethasone (steroid) was moved from 12 mg to 4 mg. I am happy to report that he didn’t experience any more dizziness. Even better, he enjoyed oatmeal and later had a pesto grilled chicken sandwich handcrafted by Kevin (dad).
Between breakfast and lunch, we had time to play Super Mario Bros on the Switch. The screen was so small that every avatar – good or bad – looked like cute little puppies to me. Thanks to Jadan’s patience and guidance, we could free the poplins (citizens of the flower kingdom) imprisoned by the monster Bowser.
During Jadan’s nap, I found a beautiful metal flower that inspired some art. I used the crescent moon tangle in the shape of a flower. The versatility of the crescent moon is endless. The crescent moon tangle is one of the fundamental tangles to learn. It introduces a technique where you mirror or ‘aura’ the shape of the shaded black ‘bump’. Another method used was shading. This gives contrast to lines, creating the illusion of depth.
To create mindful art through the Zentangle Method, please visit Zen with Zeal: Cultivating mindfulness, healing, and well-being. Tutorial videos are linked, and tangle step-outs are shown in the slide PDF for each tangle used in art created throughout Jadan’s Chemo Journey.
Chemo Day 2 art is grounded in gratitude for the power of love.
“Know thou of a certainty that Love is the secret of God’s holy Dispensation, the manifestation of the All-Merciful, the fountain of spiritual outpourings. Love is heaven’s kindly light, the Holy Spirit’s eternal breath that vivifieth the human soul. Love is the cause of God’s revelation unto man, the vital bond inherent, in accordance with the divine creation, in the realities of things. Love is the one means that ensureth true felicity both in this world and the next. Love is the light that guideth in darkness, the living link that uniteth God with man, that assureth the progress of every illumined soul. Love is the most great law that ruleth this mighty and heavenly cycle, the unique power that bindeth together the divers elements of this material world, the supreme magnetic force that directeth the movements of the spheres in the celestial realms. Love revealeth with unfailing and limitless power the mysteries latent in the universe. Love is the spirit of life unto the adorned body of mankind, the establisher of true civilization in this mortal world, and the shedder of imperishable glory upon every high-aiming race and nation.“
One of my favorite quotes from ʻAbdu’l-Bahá inspired the music “Be the Wind,” created by one of the youth and musician extraordinaire, Eric Harper, during our 2022 Transformative Leadership for Youth seminar.
“O ye beloved of God! When the winds blow severely, rains fall fiercely, the lightning flashes, the thunder roars, the bolt descends and storms of trial become severe, grieve not; for after this storm, verily, the divine spring will arrive, the hills and fields will become verdant, the expanses of grain will joyfully wave, the earth will become covered with blossoms, the trees will be clothed with green garments and adorned with blossoms and fruits.”Bahá’í World Faith
We are preparing for the storm. The theme of this quote gives meaning and purpose to the storm and all that it brings. As wayfarers of the storm, we are encouraged to see the blessing found within the grief. During Laurie’s journey, I studied the five stages of grief from Elisabeth Kübler-Ross. An example of this has been one of the most stunning and profound insights from On Grief & Grieving, that it is within the stage of denial, where disbelief and shock are experienced, that one can discover grace. Denial protects us from the unimaginable. It is through the grace within denial that one comes to terms with reality and the ability to survive what initially feels impossible to endure (Kübler-Ross and Kessler, p. 10). Jadan begins his first week of chemotherapy on Monday. We have been told that chemo will be harsh and will have a multitude of ill side effects. It is our conviction to not only see the blessings within the storm but to be the blessings on this journey.
One of Albuquerque’s most beautiful qualities is its art community. A wide variety of art and artists provide local inspiration and beauty.
One of the recent spaces Jadan and Van found is GuitarVista. They buy/sell/trade various instruments to the community, including acoustic and electric guitars and mandolins. There, Jadan found a beautiful electric guitar that will feed his soul during the next few months. He has been playing it daily in preparation for next week.
There is one constant that will never change – that is change itself. Bella and Van have made their way to Colorado to visit family and friends in preparation for the new school year. Bella returns to her final year at Lewis & Clark College in Portland, Oregon, while Vanny returns to Albuquerque to attend the University of New Mexico. As hard as it was, the girls said goodbye while all three gave Subi a squishy hug.
Juvenile – female
I have been preparing for the storm by photographing local hummingbirds. Our home has been surrounded with hummingbird feeders, which happily attract several species of hummingbirds. Becoming familiar with the Black-Chinned Hummingbird has been exciting, as it is new to me.
Juvenile – male
It has been especially inspiring to get to know the local juveniles. They seem more comfortable being stared at and photographed, even coming to my window when I am not outside with them. They also seem to know who fills their feeders. If I am a day or two late with fresh food, they seem to have quite a bit to say about it.
We miss Laurie every day.
Laurie spinning Jadan (age 5) at White Sands National Park, NM in 2010.
A few days ago, we visited her grave, added orange flowers (her favorite color,) and said a prayer. A friend recently reminded me of how the souls in the next world continue to interact and assist us in this world through prayer and bounties. The thought of Laurie’s soul assisting and bestowing bounties upon Jadan during his cancer journey fills my heart with grace and gratitude. Jadan was very attached to Laurie in his younger years and loved her deeply as he grew older. I have no doubt that the power of love binds their souls together to this day.
“In the world of existence there is indeed no greater power than the power of love.“
Soul Gardening: Jadan's Cancer Journey 