We're Packing Our Bags!

Esther's fever broke sometime during the night. Hallelujah! Still no specific information about what caused the fever. All tests and cultures have been none conclusive. We will probably never know the cause and that is okay with me as long as Esther is better. Thankfully, her creatinine is back down to a great level.

We are packing our bags and waiting for our marching orders. Esther's IV needs to be pulled and some prescriptions need to be filled. Then we are busting out of this joint!!

Thank you for your prayers! We are praising God for such a short hospital stay!

Tuesday Update

Esther is doing better. She still has a fever, but it is not as high. She is sitting up more and was able to eat a little for dinner. The docs still don't know what is causing the fever, but they are treating her with antibiotics and an antiviral to cover all bases. To add insult to injury, Esther has a mouthful of canker sores, likely the result of being more immunosuppressed after the three big doses of prednisone.

This morning was hard for Esther when they needed to replace her IV and had difficulty getting a new one started. After three sticks and three false starts, they took a break and let her rest before coming back with a portable ultrasound machine. That helped them locate a deeper useable vein and they had success at last! Poor Esther is feeling a bit like a pin cushion. Because of her fistula in her left arm, only her right arm can be used for blood draws and IVs. She has had a lot of both of those since her transplant and her right arm is a little beat up. It doesn't help matters that she has tiny veins. And, of course, everything is harder when one feels awful and has a rip-roaring fever.

Saturday’s labs showed that Esther's creatinine was responding nicely to the prednisone blasts and that it had dropped back down closer to where the docs like to see it. Today her creatinine popped up a bit, but the docs think the elevation could be caused by the fever and slight dehydration from yesterday. Just to be sure, they set up a renal ultrasound for Esther this afternoon. I haven't heard the report yet, but I’m not expecting any bad news.

Because Esther is immunosuppressed, she always gets a single room when she is in the hospital. Yesterday when we arrived, they put her in a room that has two beds and I get to sleep in one of them! It is a real treat! At times like these, I'm especially thankful for small blessings.

Back in the Hospital

Esther is in the ER right now waiting to be moved up to the pediatric floor. She is quite sick with a fever. She just had a boatload of prednisone (500 mg for 3 days and 60 mg for the last two days) which has suppressed her immune system even more than usual making her vulnerable to any and every virus. The fact that she is mounting a fever after so much prednisone (which is an anti-inflammatory) is a concern. She is being admitted so the docs can run some tests, monitor her, and treat her.

Between labs, a biopsy, three prednisone infusions, and this fever, Esther has been in the hospital five of the last six days. This looks like it will be a little longer stay than the others. Are we having fun yet??

Biopsy Results

Biopsy results show that Esther has low grade rejection which is the best (or least worst?) of the bad possible scenarios. Tomorrow morning she'll go back to the emergency department for another 500 mg of methylprednisolone. They'll have to first put in an IV, which can be a challenge with Esther's limited access. The whole process will probably take about 3 hours. Esther and I will miss the Christmas caroling at the nursing home, but we should be able to make it to Hartland for Christmas dinner. Tom will already be there with the other children.

Esther will have a third dose of the methylprednisolone on Saturday. As much of a bummer as this is, we know that things could be much worse and are thankful that the rejection is not severe. This year's Christmas crisis seems easy compared to the Christmas two years ago that I spent in the ICU with a very sick Samuel.

The following blessing was written by a friend who also has a child with kidney disease. It expresses my sentiments exactly.

"Our hope for each of you this Christmas is that you get to experience the JOY that comes from knowing Jesus Christ as your Lord and Savior, the PEACE that comes from trusting Jesus Christ to comfort you when nothing else can, and the HOPE that comes from knowing only He can meet your every need."

Merry Christmas!

An Unfortunate Change of Plans

Esther and I are spending Christmas Eve here at the hospital. I brought her in this morning for a kidney biopsy after lab results yesterday showed a significant jump in her creatinine. The docs suspect that she is having some rejection and they need to know the type and the degree in order to treat her effectively. Praise God, the biopsy went without complication and she is resting comfortably in the recovery room.

Specific results from the biopsy won't be available until this evening, but we just got news that her creatinine is even higher this morning. Not good! The original plan was to wait until biopsy result were available before starting treatment. Given the continued rise in creatinine, they have decided to give her a blast of IV prednisone here and now. This is the same medication/procedure that we did the day before Thanksgiving when she had her first rejection episode. I'm not sure why we keep colliding with the holidays, but nevertheless, that's where we are.

Because today is a hospital holiday and staffing here is low, Esther is going to be admitted to the pediatric floor for a few hours so she can be monitored while she has her infusion. The expectation is that she'll be able to go home later this afternoon.

Beyond that, Plan A is to bring Esther back to the hospital tomorrow and the next day as an out-patient for two more blasts of IV prednisone. If tonight's pathology report shows that she has a higher grade of rejection, we will switch to Plan B which would be to admit her to the hospital for a series of treatments with a different medication. This would involve being an in-patient for a couple days. We'll just have to wait until this evening's report to find out which plan we'll be following.

Well, you can imagine Esther's disappointment! For the last 12 years, we have had a tradition of spending Christmas day with dear friends in Hartland, Vermont. Plan A means Esther spends part of Christmas Day in the hospital allowing for the possibility of a modified version of our tradition. Plan B means she spends all of Christmas and beyond in the hospital.

I’ll let you know what happens.

P.S. Merry Christmas!

Happy Thanksgiving!

Wow! It has been 10 weeks since Esther's transplant! Life has been a bit hectic with Samuel and Esther both still needing to be at the hospital so much. It has been even more complicated with them each needing to be in a different place at the same time. Up until two weeks ago, Esther was still going to the hospital once a week for clinic visits and three times a week for lab work. She has actually gone a whole week between labs visits two times so far!

Tom has stepped up and is now often the one leaving the house at 6:15 a.m. to take Samuel to dialysis. The wear and tear of doing this 3-day a week routine for 2 1/2 years has taken its toll on me. The new arrangement allows Tom and Samuel to enjoy some time together in dialysis while I am able to focus on Esther and get her to her appointments and frequent lab visits.

Samuel has not been doing well the last few months. The frequent headache/sometimes migraine problem is back. He usually feels awful after dialysis and often sleeps away most of the day. Eating is also sometimes a chore for Samuel. He just feels lousey more often than not. The wear and tear of dialysis for 2 1/2 years has taken its toll on him!

Prayer request for Samuel - He needs a kidney! Please pray that the Lord would provide a kidney is His perfect timing. Things have gotten a bit complicated with Samuel having a high level of antibodies.

Praise report for Samuel - We recently learned that after months of being incompatible with 95% of the population, Samuel's level of antibodies has decreased a bit. No one has given us a specific number, but every step lower increases the possibility of finding a match for him.

Prayer request for Katie - After a textbook transplant in April 2008, Katie has had a very difficult time with her medications. There have been many issues and many attempts at finding the right cocktail of drugs. The latest medication problem started back in May when Katie began to experience terrible bone pain. Please pray for wisdom as the doctor tries to balance keeping Katie's kidney protected from rejection and perserving Katie's quality of life. There are a limited number of options for immunesuppression. The current cocktail is a bit out of the doctor's comfort zone.

Praise report for Katie - The current cocktail seems to be making a difference! Katie has been successfully (and comfortably) getting around without her cane for about a week. There are still medication adjustments to be made, but this is definitely progress!

Prayer request for Esther - It seems that Esther is having a rejection episode. After having lab work done this morning, we unexpectedly had to spend the rest of the day up at the hospital while they blasted her with a large IV dose of prednisone. Please pray that this treatment and the other medication changes that they are making will suppress her immune system sufficiently so that her body will tolerate the transplanted kidney. The docs will continue to monitor her closely and adjust their plans as needed.

Praise report - Esther had lab work done this past Friday and, because of the holiday, was next scheduled to have labs drawn again this coming Saturday. We are leaving town tomorrow and will be traveling back home late on Friday night. I knew that Esther would be exhausted and not want to go to the hospital early on Saturday morning and told the docs so. They kindly rearranged the schedule and, instead of making her come on Saturday for labs, they had Esther come in this morning. That is when they discovered that her creatinine was quite high. Often the success of reversing rejection is dependent on how quickly treatment is started. Praise God that we changed plans and went in today! Waiting another 3 days could have been disastrous!

I'm sorry that I haven't posted for almost two months, but I must confess that I have been a bit overwhelmed with life. I feel like I'm starting to refocus my sights on the Lord and that is making a big difference.

God is in control of all things and we know that we can trust in His purposes. “Shall we indeed accept good from God and not adversity?” (Job 2:10) The Lord is clearly using our kidney adventure to sanctify us and glorify Himself!

Happy Birthday, Samuel!

Today was Samuel's 16th birthday! For the third year in a row, Samuel's birthday happened to land on a dialysis day. For the third year in a row, the amazing dialysis staff went above and beyond to put together a birthday celebration for him. One of our beloved nurses, Jane, baked a scrumptious carrot cake and came in on her day off. The room was decorated and someone had arranged for the Wii game system from Baird 5 to be brought down to dialysis so Samuel could have some fun playing it. Jane and several other nurses took turns playing tennis, bowling, and cow racing with Samuel. It was great fun! Many folks stopped in to share birthday wishes and a piece of cake. Dialysis is not a great place to have to be on your birthday, but Samuel couldn't have asked for nicer folks with whom to spend his birthday.

Bill, Betty, Samuel, Jane, Dr. Ann, and Esther...just a few of the folks at today's birthday bash. Thanks everyone for making the day special!

In other news, Katie came down with cold/flu symptoms very suddenly this morning and Lydia has a sore throat. We're washing hands like crazy and praying that no one else gets infected - especially Esther whose immune system just got stomped on! Samuel wasn't feeling well this evening and missed out on his birthday dinner, but hopefully that is something different.

Well, I had intended to fill you in on all that has happened in the last week since Esther came home from the hospital, but I am exhausted and really need to go to bed. I'll try to write again soon.

Samuel's birthday wish was to get a new kidney. We didn't get "the call" today, but lots of people get belated birthday gifts, right? Let's keep praying that that kidney comes soon!

Home Sweet Home

Esther was indeed discharged today! After picking up her one-month supply of medications worth about $3,000 (ouch!), we arrived home at 5:30.

Five-year old Nicole has been staying at our house under Hannah's and Lydia's supervision since Sunday evening to allow Katherine to rest and recuperate at the hotel. On her way home this evening, Hannah picked up Katherine and we all had dinner together. When we realized how many one-kidneyed people we had at the dinner table, we decided we needed to take a picture.

Front row: Esther, Katherine, and Samuel
Back row: Katie and Tom


One very important person is missing from this photo and that is Kelly. She became a member of the one kidney club after donating to Katie in April 2008. We love you, Kelly, and are reminded afresh of your generosity!

The healing process is a little slower than Katherine expected and she needs some help getting herself and Nicole back to California. So today we made arrangements for Hannah to fly back with Katherine and Nicole. Hannah will stay for a few days to help out before flying back home. Hannah is busily packing her bag tonight and is excited about the trip. She and Nicole have spent a lot of time together over the last two weeks and have become quite fond of each other. They all fly out tomorrow in the early afternoon.

I don't expect to be posting as often now that the intensity has subsided, but I sure would be grateful for your prayers as the grind continues. For example, Samuel leaves the house at 6:15 for dialysis tomorrow morning (and every MWF) and Esther has to go back to the hospital to have labs drawn by 8:00 a.m. tomorrow (and will continue to have labs and clinic visits once or twice a week for a season).

Please continue to pray for a kidney for Samuel!

Healing Up and Heading Home

Esther is doing great! She finally felt well enough to play the Wii game here on the floor. That was one of the fun things she was looking forward to as we made plans for her transplant. With that activity checked off her wish list, we can now go home! (smile!) We expect that she will be discharged tomorrow morning. Yeah!!

Special happy birthday wishes to my husband Tom and my dad!

Pictures for Your Pleasure

After a rough start this morning, Esther turned a corner and started feeling better later in the afternoon. Zofran is helping to keep her nausea under control and she has actually eaten some food that hasn’t revisited her. She got a second dose of an IV immunosuppressant and (hopefully) her last dose of IV prednisone. She may have to continue on a small dose of oral prednisone until her levels of Prograf are where they want them to be. She reacted again to the steroids today, but it wasn't as intense or as long as yesterday. She walked the “big lap” around the pediatric floor twice. This morning they cut her IV fluids back to 50 ml per hour, but she still has neither desire nor tolerance for drinking. That will have to be tomorrow's big objective.

Katherine reports that today was also a turning point for her. She came for a visit just in the window of time when Esther was feeling the best ever!

Katherine and Esther are both looking great!


Two second cousins - Nicole and Esther


Katherine and company...
Front row, left to right: These are the folks who came to support and care for Katherine - Ashley Copeland (her sister-in-law), Nancy Copeland Kelley (her sister), the star herself, Nicole (her 5-year old daughter), Ben Kelley (her brother-in-law).
Back row, left to right: These are just two of the folks who are so incredible blessed by Katherine's gift - Tom and Nancy

One more picture for tonight....not for the faint of heart. Esther's outermost layer of skin is actually glued together.

Saturday Update

I'm sorry I didn't post on Friday night. I had strict instructions from my husband to go to bed early!

We are now happily settled on Baird 5 (the pediatric floor). Esther was moved up from the ICU yesterday afternoon, enabling us to accomplish our two big Friday goals of more walking and getting to Baird 5!

Today's improvements include no more peripheral IVs, no more sequential compression device (otherwise known as the dreaded leg squeezers), and no more foley catheter! Yeehaw!! Esther has had no pain medication of any type since Friday afternoon and is still able to move around quite comfortably. (Steriods are good!)

Today's dose of steriods was another step down in their tapered dose plan so, thankfully, Esther had a much, much less intense sensory overload episode than she'd had on Wednesday, Thursday, and Friday. (Steriods are bad!)

Esther had a bit of a set back today with nausea and dizziness, which kept her from doing much walking. Now that the foley catheter is gone, Esther is required to get up every two hours to empty her bladder. That means she is moving around regularly, but the dizziness kept her from being able to walk the hall like we've done the last two days. While she won't get any points for distance today, she certainly should get points for speed! Her morning trips to the bathroom were slow and required me holding her up when she got too dizzy. By the afternoon, she changed her strategy and practically ran to the bathroom in order to get there before the dizziness overwhelmed her. Then she'd sit on the pot with the throw up bucket in her lap (ocassionally needing to use it). Then it was a mad dash back to the bed. As the IV pole driver, I had to be on my toes in order to keep up with her.

Eating is still not high on Esther's wish list, but she managed to get in a few bites. Unfortunately, everything she ate was eventually thrown up during the dizzy trips to the bathroom.

The surgical residents were called in this evening to assess the nausea/dizziness situation and their conclusion is that, despite receiving 50 ml of IV fluids each hour, Esther is too dry. They just gave her a 500 ml bolus. Esther still has a central line in her chest which makes it easy to get things in (fluids, meds) and out (blood for labs). The nurse just came in and increased her hourly rate to 100 ml, so we're likely to be up going to the bathroom throughout the night. Rats!

Esther's red blood cell count is very low and could possibly be a contributor to the dizziness, but they would prefer not to transfuse her. Since her RBC is slowly moving upward, they are hoping we can just wait it out.

We've seen a little more of the pre-hospital Esther today, including some nice smiles and some teasing with Dad.

A Very Happy Kidney and a Peaceful Night

Six o'clock labs this morning show Esther's creatinine to now be 0.88!! That is fantastic! The rest of her body has some catching up to do before it is functioning as well as her new kidney, but I have no doubts that she'll get there!

I had a sweet time with Esther early this morning at 3:30. She woke up from a good long sleep and was much calmer. The intensity level had been turned down considerably. She still had a very strong urge to ripe off all her wires and tubes and to walk out the door for home, but she was able to express it less frantically. She was talking with her eyes open, unlike most of yesterday, and she just looked so much better.

We had some lovely harp music playing and there was a peace and deep quietness about the room as we prayed together. I was able to make her more comfortable by massaging her dry, itchy arms and hands with some nicely scented lotion. She was back asleep by 4:30 a.m. and is still sleeping peacefully.

Our big goals for today will be to do some more walking and to get moved up to Baird 5.

A Happy Kidney and an Unhappy Girl

This was a hard day for Esther. The first day post-operatively has a reputation of being a tough one and that sure proved to be true for Esther today. In contrast to her physical limitations from the surgery, Esther's nervous system seems to have gone into overdrive. About an hour after receiving a big bolus of steriods this morning, Esther went into a state of sensory overload. The tangle of tubes and wires were making her feel trapped and restrained. Every little thing seemed to frustrate and overwhelm her. She complained of being claustrophobic and had periods of extreme agitation. It was sometimes difficult to reason with her. By this evening she was beginning to settle down a bit. She has said several times tonight, "Something is happening to my body and I don't know what it is!" That's a scary place to be.

At the moment, she is sleeping and seems comfortable. We're praying for a quiet night of restorative sleep.

In keeping with the competitive nature of the Copeland family, Esther wins the prize for being the first one out of bed and up walking (against her will!). Katherine gets the prize for walking the furthest! She came down from the 6th floor to the ICU waiting room where I got to visit with her briefly. Katherine looked as lovely as ever and was still smiling...clearly sore and uncomfortable, but still smiling! Esther was having a rare moment of peaceful sleep and Katherine didn't have enough reserves to get all the way down to Esther's room so, unfortunately, the two weren't able to connect today. I went upstairs this evening to introduce some friends to Katherine and discovered that she had been discharged! You go, girl!

Katherine's ex-kidney seems very at home inside Esther. It is working beautifully! Esther is peeing like a horse and her creatinine was already down from 6.0 pre-operatively to 2.5 this morning (.7-1.5 is considered normal). We are all expecting that her creatinine will be even lower tomorrow morning. How exciting!

Well, I have fallen asleep about four times while typing this and should take advantage of Esther being asleep to get some rest myself. Thank you for your prayers! We still have some hurdles ahead, but God is faithful. Praise God for Katherine's short hospital stay!

The Wait is Over!

Great news! Katherine and Esther are both out of surgery and settled into their rooms. Katherine went up to the surgical floor at about 4:00 after recovering in post-op for a couple of hours. Esther went directly from the OR to the ICU at 4:30. Praise the Lord, everything went very well with both surgeries!

Two quick pictures before I run! Esther just woke up and is putting me to work! :)

Esther and Katherine early this morning just before showtime.


Katherine's kidney now becomes Esther's. Think about it.

You are an amazing person, Katherine!

The Long Wait

Last report at noon was that Katherine is doing well and will soon be out of O.R. #4. An hour and a half has since passed and Darren (Katherine's husband) hasn't yet been paged to go and see her. Our family calls it "hospital time". "Soon" means different things in different places.

Esther was asleep in O.R. #3 when I left her side at 11:00 a.m.

We all enjoyed Esther this morning as the effects of her pain medication made her quite disinhibited. She was talking non-stop and seemed to say anything and everything that crossed her mind. It was quite entertaining! We'll have some good stories to tell her when she is no longer under the influence. It was great to laugh and break the tension of waiting to go down to the O.R.

Cleared For Take Off!

Esther and Katherine are ready and cleared for the transplant tomorrow! There was a potential complication that arose on Friday, so we haven't been 100% sure that the transplant would actually take place until we got word this evening.

The story is too long and I am too tired to try to explain all the details. Suffice to say, Katie had some baby bunnies die suddenly and unexpectedly. The surgeon learned of this at Esther's pre-op appointment on Friday and was overly concerned (in our opinion) that the deaths could be caused by a disease that might be passed to humans. He immediately put Esther on antibiotics and threatened to cancel Wednesday's transplant if he didn't have answers by Tuesday (today). We spent the rest of the day last Friday researching and talking on the phone with our local vet, two state vets, a doctor at the Department of Health, and folks at the state water testing lab. We spent hundreds of dollars to have one of the bunnies necropsied and tissue samples FedEx'ed to a lab in New Jersey. Feed samples went out for testing. The situation escalated into a huge stress for us as we scrambled to get the answers that the surgeon required.

Reports from the N.J. lab today showed no evidence of any disease. Mycotoxins in the feed are the likely culprit, but difficult to prove. Katie found evidence of the feed being contaminated with corn and corn is a problem for rabbits.

The surgeon is satisfied that there is no threat to Esther (or Katie and Samuel who are immune suppressed) and we are proceeding with the transplant. Whew!!

After last night's pain ordeal, we got some other folks involved in Esther's care. They changed her pain medication and it has made a world of difference! Praise God! Fletcher Allen is a teaching hospital and sometimes those learning are doing just that - learning. There has reportedly been some follow-up between attendings and residents because of the poor care that Esther received.

Leaving that behind, we're looking ahead to tomorrow with mixed emotions. Katherine starts things off by arriving at the hospital at 6:00 a.m. She'll be the first into the O.R. at about 7:30. Esther is expected to follow around 10:00 a.m. I'll try to post an update during the day.

We covet your prayers!

New Day

It was a rough night here at the hospital, but the sky is beginning to brighten and a new day is just around the corner.

Esther and I will be heading down to dialysis in a few minutes. We are both exhausted.

If you'd like to send an encouraging note to Esther while she is here at the hospital, please click on the link below and follow the directions. Esther's room number is Baird 523. That will change tomorrow, but the volunteers who hand deliver the emails will be sure to find her.

http://www.fletcherallen.org/patients_visitors/visitors_guide/send_a_gift/

Rough Spot

If you have never had a child experience a "10" on the pain scale, get down on your knees and thank God! This evening we watched helplessly as Esther suffered through almost three hours of the most excruciating pain that she has ever experienced. I cannot describe the anguish we felt as we held her and tried to comfort her. To have a child begging you to make the pain go away and be unable to do it, is one of the worst things I have experienced as a parent. I'm afraid that Esther thought she was going to die. She gave us careful instructions that we were to donate as many of her organs as possible. I cannot type this without crying. In this age of modern medicine, it was unconscionable that they allowed her to suffer so terribly for so long.

Despite the incredible pain, Esther has been SO sweet. She just wanted to be sandwiched between her two parents and so we all squeezed into the bed. She couldn't get close enough to us. She whispered over and over again, "I love you, I love you". She was grateful for every small gesture that we made to ease her pain, thanking us each time. One of the challenges from the sermon this past Sunday was to consider what comes out of us when we are squeezed by hardship and difficulty. Tonight we saw the love and sweetness that is inside Esther. I wonder, if she had been angry and nasty through those hours of pain, would it have been easier for the rest of us to endure? As it was, it was heartwrenching.

After many, many requests and ultimately demanding that something be done, Esther was finally sufficiently medicated. She is now sleeping. Tom just crawled out from under her arms and has headed home for the night. I am just watching her sleep and trying to find peace.

At this moment, I am especially grateful for the wisdom of my dear friend, Kit, who insisted that I cancel the three Latin classes that I would otherwise be teaching tomorrow morning. Besides the likelihood of me being a basketcase tomorrow, this is where I need to be. Kit, thank you for mothering me!

There are both new and familiar faces here on Baird 5. One set of faces that is missing is the Perri family. Their Ross and our Samuel spent a lot of time together here and in the ICU over the last two years. Ross was buried on Friday. I know that watching a child suffer is nothing compared to losing a child. Tony and Tammy, we grieve with you and for you. I pray that you will find peace and comfort in the arms of Christ and your loved ones.

Surgery Complete!

All is well!! Tom and I are now sitting in the PACU with Esther. She is drifting in and out of consciousness with an emesis basin under her chin. They are working to keep her comfortable.

Praise the Lord, the surgery went without complication! Esther ending up losing three organs for the price of two. In addition to her kidneys, they decided to also remove Esther's appendix when they found that it was a bit plugged up. Apparently, the chances of having appendicitis are much higher when one has a blocked appendix, so they removed it as a precaution. They tell us it would be a more complicated procedure to remove an appendix with a transplanted kidney in place.

We will hang out here for a couple hours until she is more comfortable and a little more alert. Then it is on to Baird 5 and all the familiar faces up there.

Surgery in Progress

With the hospital's new wireless internet, I will have easier access to the internet. So here I am, reporting live from the scene. We just had a bit of a scare when the hospital pager went off. We've been through this enough times to know that the timing was odd. Usually, a page at this point in a surgery means bad news. Thankfully, it was just one of the surgeons returning my camera to me and reporting that one kidney was out and that everything was going well.

So, thanks to technology and a surgeon who doubles as a photographer.... here is a picture of Esther's recently deceased left kidney! May it rest in peace! One more still to come out.

Exciting News!

Well, it is time to fire up the blog once again! I'm hopeful that this round of updates will all be good news. So, let's start with a super duper awesome announcement....

Esther is having a kidney transplant on Wednesday, September 16th! Her wonderful, kind, generous, lovely, talented, funny donor is Katherine Blume! She is Tom's cousin and has come all the way from California for the big event. She brought along her 5-year old daughter, Nicole. We have all enjoyed reconnecting with Katherine and look forward to doing the same with other long lost family members who will be arriving throughout the week to support Katherine. The second cousins (Nicole and my children) have been having a great time together swimming in the hotel pool and doing some sightseeing.

Before Katherine and Esther's big day on Wednesday, Esther has to have a double nephrectomy on Monday (tomorrow!) to remove both of her native kidneys. On Tuesday, Esther will have dialysis, and on Wednesday, the surgeons will reopen the same incision to do the transplant. Two surgeries in three days is a lot, but this routine was used successfully when Katie had her transplant, so they are going to try it again on Esther.

There is so much more I could say...so much has happened in the last few months...but it is getting late and we have to be at the hospital tomorrow at 6 a.m. Please keep both Katherine and Esther in your prayers this week. It will be a hard week for both of them.

Here's a picture of Katherine and Esther after a tour at the Ben and Jerry's factory in Waterbury.



Katherine, you are a hero in every sense of the word! I struggle to find words adequate to express my deep gratitude for your gift. Please know that we recognize the incredible sacrifice that you are making on Esther's behalf and we are so, so grateful! A thousand thank you's!!

Still Waiting

As of today, Samuel has accumulated 600 days on the waiting list. There have been no offers of a kidney from the organ bank. It seems Samuel has developed a significant number of antibodies which makes him incompatible with a large percentage of the population. We have recently had three wonderful people step forward to donate. Sadly, because of these antibodies that Samuel has developed, he can't receive a kidney from any of the three. The transplant team is beginning to explore other options.

A Party and a Procedure ...or... A Festivity and a Fistulogram

Wednesday will be a particularly busy day at the hospital for us. Samuel will be "celebrating" his 300th dialysis treatment. He spent all afternoon baking cookies (all by himself!) to bring for tomorrow's party. It will be a time to recognize and thank the team of dialysis nurses who has taken such good care of Samuel for these past 27 months.

A couple months ago as we were driving to dialysis, Samuel said to me, "Some days I wish that I didn't have kidney disease [long thoughtful pause], but then I think about all the nice people that I would never have met." Samuel proceeded to list many of the doctors, nurses, and hospital staff whom he has come to know and enjoy.

After all the terrible and difficult things that Samuel has been through these last 2 years...after all the pain that he has endured...after all the disappointments...after all the days, weeks, and months that he has spent in the hospital...for him to have that as his focus is pretty incredible! I am so thankful for the young man that the Lord is shaping and the amazing attitude that He has given Samuel.

Today is Samuel's 550th day on the waiting list. We are still waiting, but not so patiently. Every time the phone rings, I wonder if it is "the call". Most mornings, Samuel optimistically announces, "Today I am getting my transplant!" One of these days he will be right!

Wednesday will also be a busy day for Esther. As you may know, she started dialysis back on June 24th. It was not a very auspicious beginning. After two dialysis sessions of multiple needle sticks trying to get her hooked up and her fistula working properly, Esther had had a total of 50 minutes of dialysis and was black and blue from her wrist to her elbow. They started talking about putting in an ash split catheter (like Samuel had for so long). As far as I was concerned, things were moving too quickly and in the wrong direction!

I petitioned for a time out and we shipped Esther off to the Jersey shore with some dear friends for a week of R and R. She came back home this past weekend and we are ready to try again. The consensus is now that she has a narrowing (called a stenosis) in her fistula that is causing all the trouble. Tomorrow, while Samuel is partying, Esther will be having a surgical procedure called a fistulogram. I'm guessing they will use angioplasty to try to expand the stenosis and make the fistula useable. If they are successful, a groggy Esther will be wheeled directly up to Shep 4 for dialysis. If they are not successful, I fear we will have to resort to the dreaded catheter. Based on Esther's labs from Monday, we no longer have the luxury of postponing treatment.

I'd be grateful for your prayers tomorrow. As I've probably shared before, one of my least favorite things in all the world is having multiple family members in the hospital at the same time. I can manage okay when everyone is in the same place, but when they start getting spread around the hospital, I have a harder time being calm and serene. On the bright side, I'll likely get my exercise tomorrow running back and forth between the 1st floor and the 4th floor. I sure don't want to miss the party!


Lydia and Esther on Long Beach Island in New Jersey. Thank you, Brian, Katherine, Faith, and Lark! What a gift!

Esther to Begin Dialysis Routine on Wednesday

Well, we’ve known it was coming, but I am still sorry to say that Esther has reached the point of requiring dialysis. She starts tomorrow.

We have been hoping that Esther would be able to have a pre-emptive transplant and skip dialysis altogether, but it seems the Lord has other plans for her.

Esther will join Samuel in the 3-day-a-week dialysis routine. She's disappointed, but is taking it all in stride. She is amazingly matter-of-fact about the whole thing. As of today, she has accrued 74 days of waiting time on the organ bank list. There is no telling how long it might take to get a kidney through the organ bank, but we are hoping and praying for something to come through this summer.

Samuel, on the other hand, has 536 days of waiting time accrued. That's a lot of time for a pediatric patient! He was activated on the waiting list in May and could get "the call" at any moment. Everyone, including the transplant team, is surprised that a kidney hasn't yet become available for him.

We can only wait and trust in the Lord and His perfect timing for Samuel's and Esther's transplants.

It has been a long time since I last posted. If I get a chance, I will try to fill you in on some of the highlights of the last five months. In the meantime, I would be grateful for your prayers for Esther as she begins a new phase of her personal kidney adventure.


Esther and her horse, Candy, enjoy some quiet time together.

Medication Woes

Katie is having a terrible time with her medications. It has been a challenge for the docs to find a combination and dosage that keeps her protected from rejection without lowering her white blood count too much or torturing her with side effects. If you remember, she was hospitalized last summer for a couple days because her white count was dangerously low. Her transplant was 9 months ago and she is still having blood drawn once or twice (and sometimes even three times) a week to monitor medication and WBC levels.

A couple months ago, Katie began transitioning from one immunosuppressant drug (Prograf) to another (Rapamune) because she was having some unbearable side effects from the Prograf. A couple weeks ago, the docs inadvertently overdosed her on the new medication and she has been a physical and emotional wreck ever since. Not fun!! If things don’t level out soon, we are thinking about sending Katie to live with Dr. D. That should motivate him to adjust her meds to a level that she (and those around her) can live with! (Smile!) Seriously, Katie is really struggling and would be grateful for your prayers. After a 4.0 GPA last semester, she is having a hard time keeping up with her studies.

Because each person metabolizes drugs differently, finding the perfect combination and dosage of drugs is an art, not a science. Katie clearly metabolizes things differently than the norm. Lab work shows that she is momentarily at the “right” drug level, yet her white blood count is too low and she is overwhelmed with emotional and physical side effects. The risk of backing off on meds enough that Katie is not experiencing side effects is that she may then be susceptible to rejection.

So while you are praying for Katie, please also pray for the docs that they might have wisdom to manage Katie’s meds in a way that keeps the whole person of Katie well, not just her kidney.

Surgery Went Well!

Today Samuel did a great job of NOT living up to his title of "prince of complications" (as he has been dubbed by a friend). Everything went well!

His fistula is on the inside of his right elbow (he is left-handed) instead of down on his wrist like Esther's. Instead of one incision (as Esther has), Samuel has two. The vein and artery are much farther apart higher up on the arm, so to make the connection requires two openings of the skin.

Samuel has had so many IV's in the past that he has sections of his veins that are damaged from scarring. They needed to place the fistula higher up his arm in order to find a good spot. The vascular surgeon still had to do some work to expand a scarred area in the vein. We'll just have to wait and see how the fistula develops. It is not uncommon that a fistula needs a second procedure at some point to make things work just the way they should.

My Mister-been-there-done-that was as calm as a cucumber (and full of it!) in pre-op. Here he is doing Algebra while waiting to go to the OR.


Samuel, are you actually smiling AND doing Algebra at the same time? How is that possible?? -VBG!-

Thanks to everyone who was praying for Samuel today!

Fistula Surgery for Samuel

Kindly keep Samuel in your prayers tomorrow as he has his fistula surgery. He is scheduled in the OR at 2:30. It is a relatively minor procedure, but Samuel has a history of making things more complicated!