RHONDA’ S UPDATE
If this journey has taught me anything, it is that life can change in an instant. Don’t waste a moment harboring resentments or trapped by anger and frustration. Acknowledge those feeling fully or they will revisit, and then choose the quality you want for the next present moment, for it is all you truly have. That is the power of NOW.
Alicia and Steve may feel cumbersome as they maneuver Connor’s path from fever-to-fever and from rash-to-feeding tube mishap, but indeed I see them being guided, willing to adapt to what is, and walking in grace. Steve is strong enough to accept guidance from Alicia, bending with her needs. He willingly gets up with Carson at night and soothes Connor with such tenderness and love. Alicia is so patient, and yet firm. She pulls inside to regroup after each seeming assault of unexpected circumstances, and then like a rock climber she reaches for her next grip. She remembers her foremost intention is to have a healthy son. That re-calibrates everything and somehow it allows her to set her sights on any silver lining she can find. Then, she insists that everyone around her do the same. We have all learned to dance together amazingly well and any upset slides off as if wearing a Teflon raincoat.
This is truly a journey where the next step doesn’t appear until you step (or are sometimes feel pushed) off the cliff. With each breath you are faced with a new choice point… do I give up, or do I live fully. Do I want to be right, or happy?
On Saturday of last weekend’s domino of events the reluctant sun of the Northwest was out and shining bright. Connor was curled up on the couch, very unhappy and withdrawn because of not feeling well and depressed by the upset from the feeding tube. How hard it had been on Friday for Alicia and Steve to hold this little guy down while awake for this uncomfortable and frightening procedure of shoving a tube down his nose.
Alicia has become a master of realizing the importance of milking joy from every opportunity. She motivated us all to get in the van and head for the La Connor Tullip Festival in a near by community. She felt that if Connor would feel lethargic no matter where we were, we might as well tuck him and his brother, Carson, safely in their car seats and head out to see fields of colorful flowers. As Alicia reminded me, we have ‘now’ and we don’t know what tomorrow will bring. So off we went.
Connor perked up a bit seeing the flowers, horses, and kites from the window of the car. We even stopped at a beach where he could stretch his spindly little legs, and a smile came back to his face as he threw rocks into the water. He would point out rocks too big for him to manage that he insisted I throw into the water for him. Kerplunk!
Connor has birthed the gift of unity despite differences. He has taught us to remember and choose the things of true importance each moment. The outing brought me such joy, wedged for a day between the two boys in their car seats, drinking in Spring. Connor was content just to hold my hand and stroke my face as he enjoyed life passing by in that outer world. It was a delight to see everyone beyond the walls of the Ronald McDonald House, enjoying the fresh air, noticing the subtle beauties, and forgetting for a few minutes that this little boy is pushing his way through cancer.
Thank you all for your enduring support of this ever-so-sweet family. Please keep the prayers and positive thoughts flowing.
In Joy, Rhonda (Connor and Carson’s Aunt BoBo)
Hello to all,
It feels like the last week has been one step forward and two steps back. On Sunday, Connor got another fever so it was off to the ER for the third time in four days. After another round of blood tests, they sent us home with no idea of the source. Thinking the trip to the ER was going to be our event for the day we came home and started to get ready for bed.
As Connor was taking his medicine, he gagged and threw up his feeding tube. I quickly called the doctor and she said that since we had already had a trip to the ER earlier in the day and that he had a doctorâ€™s appointment Monday that we could leave the feeding tube out until Monday unless Steve and I wanted to try to put it back in ourselves. Although I have done MANY things over the last year that I never would have thought I would be able to do there was no way I was going to try to put his feeding tube back in. Leaving it out would be much less traumatic to both him and me.
On Monday, we went to see the doctors at the Seattle Cancer Care Alliance to see if they had any ideas for what was going on. Connor saw Dr. Carpenter, a specialist on Graft Verse Host Disease (GVHD). He was almost positive Connorâ€™s symptoms were GVHD related but was not 100% sure, so he scheduled Connor for a scope of his tummy and intestines plus a skin biopsy to see if it was indeed GVHD.
Not long after we arrived home on Monday from our busy day of appointments, Connors fever shot up to 104.7 degrees. This time he was admitted to the hospital so he could be monitored more closely. Connor had his scopes done on Tuesday afternoon and, aside from not being able to eat for the 24 hours leading up to the procedure, he came through everything just fine.
As we waited for the results, I was trying hard to determine exactly what I was hoping the results would be. On one hand, GVHD would mean a longer time on immune suppressive medication and a higher risk of infection but on the other hand, if it was not GVHD it could be something worse and at least the doctors know how to treat GVHD. All suspicions were confirmed when all the tests came back positive for GVHD. For those of you who donâ€™t know GVHD is a condition in which transplanted immune tissue (the donors bone marrow cells) attack the tissues of the new host’s (Connor) body.
At first, I felt a sense of relief that we now know what is wrong but at the same time, I also felt disappointment and frustration. I wanted to go home so badly. As of right now it looks like we will be in the hospital for a few more days and then we will remain in Seattle for a few weeks until we know the medication is working and his weight increases. The doctors started him on a couple of the same immune suppressive medicines he was on last November so now we wait to see how quickly his body will start to respond.
Last week after the doctors gave us the OK to go home I felt uneasy about leaving, but was unsure whether I was feeling this way because I was leaving my â€œcomfort zoneâ€ with Connorâ€™s care and support system close by, or if it was because I was worried about his weight loss and rash. I prayed that God would help me to know if going home was the right decision to make at that point. My intuition was right and I am now certain that despite my desire to be home, this is the best place for Connor to be right now.
Steve has been down here for the last two weeks in hopes that we would all be able to return home together as a family. As much as we would all love him to stay here until it is time for us to go we know that it is not possible. Therefore, we will send him home on Sunday with the expectation of joining him very soon.
Thank you to everyone for your continued prayers and support as we maneuver through this bump in our journey.
All our love, The Dunhamâ€™s Steve, Alicia, Connor and Carson
Please Pray: The new medicine will start to work quickly Connors weight will improve We will be able to return home soon
visit and donate at: www.connordunham.com
Alicia R. Dunham 5130 40th Ave NE Seattle WA 98105 206-838-0707 Seattle Home