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!

Another day, another infusion and Ada takes steps

Eve calls the warming packs her "robot arms".

I'm up late browsing Craigslist for another pack n' play. The final straw was packing all family members into the car by 7am with all but the kitchen sink, pulling out of the driveway saying to Keith "we're late" and realizing I forgot the pack n' play. Ada needed it for her nap at our friends Tarah and Chad Voss's house. She and Marilouise were spending the morning there so that Evelyn and I could go to Children's in peace (an IV in the infusion clinic and noisy siblings do not mix). So back we pulled into our driveway and I raced to the top of our three-story townhouse to fetch the necessary item. As we pulled back out of the driveway Keith informs me that his head will explode if we don't stop for caffeine because we were out of coffee this morning. Starbucks fulfilled its duty--crisis averted. So off we ran (if you haven't "run" in a car you do not have children) with pack n' play and coffee in hand to sunny Beacon Hill, where Marilouise and Ada could stay happy, bouncy, and noisy. Our next stop was the University of Washington Living Donor clinic for the last of Keith's donor tests. Keith had the privilege of purposely ingesting radioactive material. He still looks normal but I guess I'll know when I turn out the lights. Evelyn and Mommy's final destination was Children's for an iron infusion (3 of 4). Amazingly, we all made it to our places on time. Amazingly, it felt peaceful in a chaotic sort of way. And now I'm on a mission--chasing down a pack n' play so it can be a little more peaceful and a little less chaotic.

Bonus material:
Smallest Sherman decides walking may be interesting. If you can ignore annoying mommy voice over Ada is really cute.

Labor day exertion

Though we have been running on empty, we decided to go to Fort Casey after church. My parents were camping with my "God parents" Inger and Dave Logelin. It was a long drive but important for memory making and family fun. Keith strapped Ada to his back and we explored the fort. Evelyn was throwing up throughout the day but still enjoyed the trip with the rest of us.

Marilouise started talking about feeling anxious and sad at breakfast. I thought she meant when I die when she said "I'll miss you when you are gone" but she meant when I was at the hospital taking care of Evelyn. We were able to talk about the timeline and where she'll be and how to deal with those feelings. We prayed that God would help her not feel anxious. It's hard to remember that she is just 5.

Ada Claire with Grandpa

S'mores

Evelyn and Marilouise keeping warm

enthusiasm

exhaustion

What transplant doesn't mean

One thing of which the doctors keep reminding us is that there is no cure for kidney disease. There are only treatments. Dialysis and transplant are merely treatments. We are hopeful that Ev will keep Keith's kidney for more than 10 years but we don't know. A lot of it depends on keeping her safe from illnesses and diseases her body will be less able to fight off on its own (because of the immuno-suppresant drugs she will take for the rest of her life in order to prevent her body from rejecting the kidney). For example, she is more susceptible to skin cancer and diabetes so we have to practice serious sun safety. We also need to keep our house really clean and practice good hygiene (washing hands and food). It also depends on us making sure she takes her medications on time (every 12 hours) every single day of her life and doing labs and check ups frequently.

Transplant at one time seemed like the end of our marathon. We have since learned it is simply a water break in the midst of a much longer marathon. It will make her healthier and happier for as long as the kidney remains healthy and her body allows it to stay. She will grow better, eat better, sleep better, and ultimately live better. But she may have 4, 5, maybe more transplants in her lifetime. We don't share this because we are downplaying the miraculous opportunity ahead of us. We just wanted to give our friends and family the whole picture. In other words, we may yet be asking for kidney volunteers :o).

Another milestone--ML rides!

Transplant timeline (aka what we are in for)

Some of you have asked what our life is going to look like in the next year. I've given a brief timeline below, as we understand it.

Transplant: Keith is in the hospital for 3 - 4 days and then recovering for a couple weeks. He can't work physically for 2 - 3 months so we are relying entirely on our employees.
Evelyn will be in ICU for 3-4 days and then in the hospital for approx 2 weeks.
1 month post-transplant: we are at Children's for labs and check ups 3 - 5 times per week. It is usually a half day every time we go to the hospital so we will be almost living at the hospital and sleeping at home. At any time during this period we could be readmitted to the hospital if her labs don't look good so we could stay at the hospital many times. They say with younger patients it is likely we will have to stay at the hospital frequently.
2 - 3 months post-transplant: our visits to Children's for labs and check ups go down to 2-3 times per week. we could still be readmitted but hopefully it will be less.
4 - 6 months post-transplant: usually recipients begin to stabilize by this point. we are at Children's for labs and check ups only once per month.