Enjoying the eye of the storm

Anticipation
Yesterday marked two weeks until Ev's first transplant. The anticipation is very similar to expecting a baby. Knowing the big event brings lots of changes, wanting to have everything set because the next 6 months will be difficult. In the meantime, our lives have been surprisingly peaceful. Thanks to all the wonderful people who have brought us meals and watched our non-dialyzing children, our lives are predictably chaotic. I didn't think these words would ever come from me but I'm really thankful for dialysis. I've learned a lot about dialysis, its blessings and curses, these past few weeks. The biggest thing I've learned is that I'm thankful for the pause it provides us before transplant.

Did you know?
1) Dialysis began in the 1940s.
2) The first adult outpatient treatment center started here in Seattle 50 years ago (Thank you, Northwest Kidney Centers).
3) The word comes from Greek dialusis,"διάλυσις", meaning dissolution, dia, meaning through, and lysis, meaning loosening or splitting
4) The three kinds of dialysis are hemodialysis, peritoneal, and hemofiltration.
5) Dr. Willem Kolff, a Dutch physician, constructed the first working dialyzer in 1943 during the Nazi occupation of the Netherlands. The first-ever patient successfully treated with dialysis was in 1945, a 67-year-old comatose woman regained consciousness following 11 hours of hemodialysis with the dialyzer, and lived for another seven years before dying of an unrelated condition.

New hardware
Keith & Evelyn arrived for dialysis last Wednesday at 8:00am. Unfortunately, her hemodialysis catheter was stuck so they had to replace it. They fit her in the schedule at 5:30pm, afterwards heading to dialysis. In those 9 hours of missing dialysis and her medicines (she had to fast before surgery) her blood pressure was back up to 166/100 (that's scary for a 2 year old who's ideal would be 95/58). I realized dialysis has literally given Evelyn life until we could get scheduled for transplant.

Unexpected Preschool
Keith takes Evelyn to dialysis Monday and Friday. I take her Wednesday and Saturday. Besides getting to spend a lot of one-on-one time with her, we have had the opportunity to do preschool (ABCs, numbers, cutting, tracing, gluing). Evelyn has to sit in her chair for more than 4 hours. A lot of the children watch movies and play video games. I'm not sure if it is because we don't have a TV but Evelyn's media limit (before she falls apart and gets really cranky) is about 30-45 minutes. That leaves us with a lot of time to fill in with other activities. Thankfully, we get to play with play dough. We do Legos. We read books. While it's not always fun (dialysis sometimes makes her "cramp" or throw up or cry because she feels lightheaded and miserable) overall she's made the best of it.

The eye of the storm
On the days when Keith takes Evelyn to dialysis I stay home with the other cuties. Our house was hit by a minor bug this week so we stayed home from our school co-op this Monday. Marilouise, the social butterfly, was so disappointed to miss her friends and her class's "back-in-time travel". However, I painted her nails after math and reading and thawed out a frozen treat from our friend, Kirsten (sweet potato casserole). We sat and read a book together on the couch during Ada's nap. This isn't what I expected with dialysis. And it is thanks to all of the people in our lives who are loving us in practical ways and lifting us in prayer. I don't think I want to build a summer home here but our lives are actually quite lovely.

Nail therapy

Saturday after a special service at church

Ready or not, here comes transplant

I've been thinking about The Princess Bride. "Let me splain. No, stoo much. Let me sum up."

Wednesday, September 26 - official diagnosis "renal dysplasia", "vesicoureteral reflux nephropathy", and "end stage renal disease".
Thursday, September 27 - transplant scheduled for November 28
Wednesday, October 3 - transplant rescheduled for October 31

My treasured mug

We are really excited to share this news with all of you who have walked with us up to this first milestone. It took me a few days after we heard the first scheduled date to feel happy about the delay (we had thought for many months it would be in October). One month may not seem like a lot in the grand scheme of things but 4 days a week for 6 hours every session is a lifestyle and not one one wants to prolong. A couple things helped put my thoughts in perspective. First, I asked God to help me. Second, my mother gave me a Bible bookstore mug. Now I have been known to mock Bible bookstore paraphernalia but I must tell you that I treasure it because it came from her heart and because it spoke truth directly to our circumstances. Third, my husband has met many of the other patients and parents in the dialysis unit (a 12 year old has been on 3 day a week dialysis for 10 years, received his first kidney 2 years ago and is back in dialysis. His father had to lose 40 pounds to donate his kidney and they live in Bellingham!). Their stories have reminded us that we are blessed:

1) Keith is a match and he's, in my sister-in-law's words, a bean pole.
2) We live close to the hospital.
3) We have family, friends, church, co-op, nurses, and doctors who are caring for us in so many ways.
4) I found my sense of humor at the beach (it had been on vacation there and couldn't get a ride back).

So when they called today to tell us we were scheduled in a little more than three weeks we were overjoyed. But it wasn't the change in circumstances that made me happy. God had already gifted that to me. The news today was just icing on the cake.

Not robbing a bank.

Mary Poppins was right - kites are therapeutic

Our Take Them A Meal page

Lunchtime in the hospital's hallway

The past few weeks we've been blessed by Marilouise's school co-op and other friends with lunches, snacks, dinners and treats (thank you!!!). Others have asked about bringing us food. Our friend from church, Michelle Housel, has graciously organized a Take Them A Meal page, if you wish to join the effort. Our humble and grateful thanks.

Two years coming: Sherman Family Vacation!

Most of our happy throng, minus the photographer and Uncle Jimmy.

Ada's arrival postponed our trip the first time. Evelyn's dialysis threatened to do it a second. Although Ev, Ada, and I left today for dialysis, Keith's mom and dad, aunt and uncle, and brother made the big trip out West so we could all spend a week together at the Washington coast. Nothing like a few days playing on the beach to adjust the attitude. Keith and I went for an afternoon run on the beach. Marilouise and I spent some much needed "silly time" riding bikes on the beach. Evelyn built sandcastles with Grandma. And Ada ate sand.

Walking to the beach

Grandma reading Richard Scarry.

Harder to hug and harder to love

We made two pies, 6 pints of jam, and lots of memories.

My daughter has a couple medical accessories that are noticeable bumps under her shirt. It makes Keith and I cautious when we pick her up and hug her. What's my excuse? This past year and a half has worn on my kindness, patience, and sense of humor. As days have turned into weeks, weeks to months, the chronic stress has made me feel like I'm in the middle of a grindstone.
When I ask forgiveness from Keith or Marilouise for what seems like the thousandth time I sometimes wonder, "What happened to the 'nice' me?" Answer? It was just a veneer. Not that God hasn't already changed me. But it reminds me of something I heard a preacher say when I was 14. "Circumstances don't make you. They only reveal you." When I feel as though I will be ground to nothing by all of the extra care, the worry, the busyness, I am comforted with the knowledge Evelyn's pain and our struggles are not for nothing. I hate English ivy; I respect blackberries. English ivy chokes the life out of majestic trees and gives nothing in return. Blackberries are a fierce plant--unforgiving and persistent. But they bare fruit! Both are annoying weeds but one takes life, the other gives it. "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all" (2 Corinthians 4:16-18). Thankfully, God's not merely revealing my fragility or my sinfulness. He's changing me from the person I want people to think I am to the one created in His image and likeness. Then, I might be easier to hug (and love) regardless of circumstances.

A detour through dialysis

Evelyn will be going to her third session of dialysis today. That's how fast her little life can change. It started on Wednesday when Evelyn and I went in to the hospital for her last iron infusion. We expected to be free to pick up her sisters at my friend Tarah's house by 10:30 and then come home and finish cleaning the house.  

Tubiefriends.com, a non-profit that makes Build-A-Bears with medical accessories.

As soon as the infusion nurse took her blood pressure (160/100, which is very high for a 2 year old who should be at 100/58) she called our nephrologist. Dr Flynn asked us to stop by the clinic when we were done with the infusion. Evelyn had been looking very puffy the past month. She also started grunting multiple times a minute (especially in the couple days leading up to our Wednesday infusion). 

Getting ready for the hemodialysis catheter placement

Both Keith and I were getting increasingly worried about her but were just hoping she could hold out for transplant. As soon as he examined Evelyn he looked at me with his best "brace yourself" look and in his characteristic matter-of-fact yet compassionate voice said, "Evelyn's being admitted and she needs to start dialysis." And that was that. There was no arguing when my child had started retaining water, so much water in fact that it had made its way into her lungs. There was no pounding my fist and saying "Well, can't you transplant Keith's kidney today?" Evelyn was in crisis and our wonderful medical team gave us the only good option.

My sweet sister who came and shared joy and comfort

So they were able to get her stabilized enough with the help of a diuretic (to start to help her body get rid of 4 pounds of water!!! FYI, she only weighs 27 pounds) and a third blood pressure medication. But this was only to move her from semi-emergency to "let's get this girl transplanted ASAP". Transplant still looks to be about 4 - 6 weeks away so in order to get her there we had to start dialysis. 

Evelyn's dialysis nurses, who fell in love with her.

Now for those of you who are unfamiliar with dialysis let me share my vast knowledge I've acquired in lo' these 24 hours. Essentially, you take your blood out, put it through a washing machine, and stick it back in. (Weird? Try having your two year old sit on your lap, coloring, and listen to the washing and watching her blood go in and out of tubes.) This process is all made possible by a magical hemodialysis catheter (sometimes called a Hickman, named after the doctor at Children's who pioneered it).

Simultaneous dialysis and blood transfusion--how efficient!

If any of you have followed our friends Sten and Jai Anderson's daughter Allistaire's journey (Jai's blog, Conglomeration of Joy, is quite remarkable and beautifully written) she just had her catheter out a few months ago.




We will be in dialysis 4 times a week (approximately 3 hours each session). Keith is at the hospital at this moment with Evelyn. I'm at home trying to remake our home. We are a little shell shocked--it took me three days to communicate an update. However, we feel upheld--by our God, by our family, by our medical team. This is a detour, which at first I sobbed at having to take. But now that Evelyn is feeling better I'm relieved.

Evelyn's roommate Bailey, who had her kidney out the day before this photo! Bailey asked Evelyn to go for a walk and they naturally held hands.

Tears and soap

Keith and I usually sing to the girls as a way of settling and ending the day. The selection ranges from Ode to Joy to Molly Malone, depending on the crowd's requests. A couple nights ago, the hymn It is Well With My Soul came into my mind. I gave them a brief introduction to the song, explaining that the author wrote it after he had lost all of his children in a tragic accident. As I began to sing the first verse, I saw Marilouise's eyes well with tears and her hands cover her face. When I finished she looked up and said very solemnly, "That was a very sad song. I felt very sad." I was surprised that she was so touched by the song and disappointed she felt sadness rather than peace. As I stood there wondering what to say I was tempted to fast forward her beyond the grief and fear to the happy part (And Lord haste the day when my faith shall be sight, The clouds be rolled back like a scroll; The trump shall resound, and the Lord shall descend, Even so, it is well with my soul". And then I realized Marilouise can't take short cuts anymore than I can to a full understanding of God's hand in our lives. I wanted to just tell her and have her believe me that God cares and will set everything right in the end. I didn't want her to have to walk through the painful and perplexing experiences, letting God himself show his love, faithfulness, and power. But I didn't know know Him to be good until I knew it through personal experience. I can't spare Mimi these lessons without her losing the knowledge. This kind of short cut isn't a short cut to the same destination. Rather than a deep knowledge of God's unfailing goodness it's a short cut to shallow faith and glossy ideas of "wellness". So as I looked at my five year old laying in bed with red eyes and I tried to think of the perfect words, the ones that would convince her that her soul would be well, I was reassured I didn't need to. I prayed instead that as she observes and lives through our family's ups and downs (peace like a river and sorrows like sea billows) her compassion deepens, her sorrow sweetens, and her knowledge of God's sustaining hand will solidify. I also hope she learns to carry a tune. But one step at a time.

Our new automatic soap dispenser. Fighting germs one amazing gadget at a time!