Just an update on Mariah, she has been healthy and doing ok.  We are doing bloodwork this week and once that is processed, she will go active.  So please pray for her continued health, a donor, and a perfect match.

So much has been packed in since our last update.  She has been healthy, but the dialysis has been very difficult.  We are on our 3rd machine as we have run into technical difficulties.  The first one was sent back because it was not functioning properly and could have overfilled her.  The 2nd worked for one night and then was malfunctioning on every cycle and we were up every 45 minutes that night to check on it.  Needless to say, that one was sent back promptly and we had to do it manually for a couple of days.

The 3rd one arrived and worked for a week before it started to have the same issue.  So more stress, but we finally got to the bottom of it after numerous phone calls and meetings.  Thankfully Kale has the technical skills and Keely has the medical skills, so together we were able to pinpoint the problem and had the nursing staff review their program and establish some parameters that have resolved the issue.  

Again, we are looking for a willing donor, so please share this with anyone that may be interested.

Requirements : between the age of 21 and 40. Blood type B (pos or neg doesn't matter, just the type). Then start the process at the U of W (the link below) or by calling (206)-598-3627.

https://www.uwmedicine.org/specialties/transplant/living-kidney-donor-program

Well, since our last post of great news, it has been a rough month.  We were on schedule to be active by now, but Mariah has to be 4 weeks out from any vaccination or illness.  She got sick with some virus a couple of weeks ago and had a fever.  So that pushed her back a couple of weeks. 

Now today, she caught the stomach bug that has gone through our family.  It is a quick moving bug, but with Mariah, the throwing up leads to dehydration which leads to elevated BP and heart rate.  So usually she ends up going into the ER for fluids.

So pray for our little girl.  She is hurting and it looks like a rough night for her.

Sacred Heart of Jesus we place all our trust in you.

Mariah had her final required vaccine for transplant today.  She is already feeling a little under the weather; however, we are celebrating as it was confirmed today that we get to go active on the transplant list the end of October!!!! 

We also had a phone visit with her Nephrologist today.  We decided to go with the new dialysis solution.  We will be starting that next week.  Studies indicate that it is more effective at filtration and she won't have to do as many hours of dialysis a night (tonight we are moving back up to 12 hours).  When he asked Mariah how she felt about the risks associated with it she said, "I am okay with whatever you decide.  I am at peace with whatever life sends my way."  She is so resigned, and today so matter of fact and faith filled.  God is so good and He has filled her with peace.  Dr. asked Keely how she felt and she said that she wished could feel as at peace as Mariah. 

If you feel called to donate a kidney to Mariah we are reposting the link and number below.   
Requirements : between the age of 21 and 40.  Blood type B (pos or neg doesn't matter, just the type).  Then start the process at the U of W (the link below) or by calling (206)-598-3627.
https://www.uwmedicine.org/specialties/transplant/living-kidney-donor-program

Sacred Heart of Jesus we place all of our trust in You!  St. Rita, pray for us!

Blessings,

The Lowman Family

Thank you for all of your prayers!

I am happy to say that the past twelve days have been pretty great!  Seems like Mariah has energy, is eating, and is mostly attending all of her classes. 

We received word that she has a positive titer for her Hep A vaccine, so that is no longer an issue...Yay! However, she does not have a strong enough titer for Hep B, so now we will negotiate some more.  If the transplant team agrees, it is possible to get the 3rd booster after transplant; however, if they do not agree, then we may have to wait another several months to go active. We will keep you posted... please pray for a positive outcome and that God protects her.  She goes in on Friday for her last required vaccine! 

Also, we are in communication and may start a new solution for dialysis.  This is not without risk.  The new solution tends to not be so readily absorbed by the body (which is good) and does more dialysis while dwelling internally; however, it is also known to create false glucose readings on many lab tests, so the patient has to carry a medical alert with her at all times so all healthcare professionals are aware.  There are other risks as well.  Please pray for wisdom in discernment for Kale and I and her medical team so that we may choose the right treatment for her.

If you feel called to donate a kidney to Mariah we are reposting the link and number below.   

Requirements : between the age of 21 and 40.  Blood type B (pos or neg doesn't matter, just the type).  Then start the process at the U of W (the link below) or by calling (206)-598-3627.
https://www.uwmedicine.org/specialties/transplant/living-kidney-donor-program

Sacred Heart of Jesus we place all of our trust in You!  St. Rita, pray for us!

Blessings,

The Lowman Family

After our last meeting with our PD team in Seattle, we had a surge of hope that we could see the end of this vaccine thing and get her active on the list.  Then, shortly afterwards, the transplant team told us that they were going to delay her another 6 months for a second Hep A vaccine and potentially 4 months for the third Hep B.  We responded that it made no sense as she is not in a high risk category. We also reiterated that the risk of delaying her transplant is much more of a risk to her life and laid out the entire trajectory of decline over the past 6 months and explained that if it continues at this pace it wasn't going to go well.  Not to mention, that you can get both of those vaccines after transplant.  They reconsidered.

Let me start with a bit of light.  This past week Mariah was doing great!  She had energy, her nausea was under control, dialysis was going great, she was able to attend all of her co-op and Confirmation classes, was witty, I saw that sparkle in her smiling eyes. It was really uplifting to see her enjoying life like a normal teen. 

Yesterday, she had to go in for two more shots.  They kicked her hard.  This morning, she was hard to wake up...had chills, a low grade fever, headache, and nauseous.  She tried to get out of bed but went straight back. We've been bringing her meals to her room.  Sigh.  This is such a hard process. 

On the 16th we will get her tested for antibodies for Hep B; if she has them, we won't have to get another shot before transplant.  Please, pray that she has developed antibodies. If she has, then she will have one more vaccine that is required on the 27th of September.  That said, we should be able to go active on the transplant list by the end of October as activation is allowed only 30 days after the last vaccine and/or illness. 

Please continue to pray for Mariah's health and that she gets through today, (suffering is long), pray for her strength and endurance. We found out last visit that she has to get injections every two weeks to increase her red blood cells instead of every 28 days. This journey is not fast, it is like a marathon with many hills and a few mountains.  Pray for her donor; may God bless the soul who donates a kidney to Mariah.  If anyone reading feels called to be her donor, please reach out to the U of W (Blood type B).

Thank you for your continued prayers and support. We very much appreciate all of the love and beautiful messages.

Sacred Heart of Jesus we place all of our trust in You;  St. Rita, pray for us!

God Bless you all,

The Lowman Family

Mariah did really well with her shots initially.  Friday and Saturday were pretty good. Sunday she woke up dry heaving and she said that she felt so bad that she couldn't even describe it.  I asked her if she thought she needed to go to the hospital and she said no.  She just closed her eyes and stayed perfectly still until noon.  She was able to get up and dressed in the afternoon but took breaks going back to bed.  Father Jerome came up to our house and gave her the anointing of the sick.  Today she still feels pretty yucky.  She got up at about 11:30, tried to go for a short walk, but came back in out of breath and said that she just couldn't as she was too fatigued. She sat on the porch and snuggled our kittens this evening.

Seattle got back to us and Mariah has to get 3 more shots, she didn't have antibodies to varicella so we still have to get another.  Once those are out of the way...we go active.  I am guessing by Oct. 11th. as there is a 4 week wait time between live vaccines and transplant.

If anyone feels called to donate a kidney to Mariah, you must be bloodtype B or O, and cmv-.  Donor must be in the age range of 21- 40 years and in good health. Contact the U of W for screening.  I will post their contact information mid week.

Please keep praying... specifically for protection for Mariah's body during the final three shots.  For our donor, please ask that God protect him/her and put Mariah's need on their heart.  Pray for us to have the wisdom to make the right decisions for her and for her Dr. to make the right choices for treatment as well.

Thank you,

The Lowman Family

Good morning,

Yesterday we made the 12 hour round trip to Seattle Children's to meet with the team and back.  The meeting went really well.  We wrapped up the correct Medicare paperwork and had Mariah's transfer set changed (the end of the port that connects to the outside tubing).  It is standard to change it every 6 months to prevent infection. 

Kale and I asked that our transplant coordinator be present at this meeting with the goal of getting her active on the list as soon as possible.  We asked for a minimum requirement. Here is the minimum requirement. Two vaccines today (only one live virus); Another two over the next 4-6 weeks, and if titers are met for varicella, we may not have to do it; however, if not, we will.   Summary: 5 left; possibly 4. 

Also, her remaining kidney is continuing to decline.  Will will be starting 12 hours of dialysis a night instead of 10. 

Please pray that Mariah keeps strong today and tolerates everything well.  Pray that her nausea remains in check so that she can eat and put on some weight.  Pray that Jesus and Our Blessed Mother Mary continue to be with us on this journey.

Again, thank you for your prayers, they cover us and keep us strong. Her appointment today is at 11; if you could say a prayer at that time we would very much appreciate it.

Sacred Heart of Jesus we place all of our trust in You.  St. Rita, pray of us!

The Lowman Family

Last we posted, Mariah was going in for her vaccination.  Overall, it went well, no reaction; however, it affects her quite a bit.  She just had one, and probably will continue to do one at a time as that is all her body can handle.  Mariah's friend came with her this time. After her shot we wait in the clinic for about 20 minutes to make sure there is no reaction. Then we took the girls out for a bite to eat. After about 45 min. post shot, she fell asleep sitting up. We asked her if she was okay and she said, "I just can't keep my eyes open" ...she calls this "anvil eyes" . She tried to eat a few bites by feel, with her eyes closed, but then just put her head down on her friend's shoulder and fell asleep.  I will post a picture.  Her food and drink is basically untouched.  We took her home and she went to bed.  She slept until noon the next day, got up for a few hours and then went back to bed.  She sleeps a lot after each vaccine.  We are scheduled for two on the 16th; however, Mariah probably will take just one.

Mariah's blood pressures have been very high.  Her typical for the last few weeks were running in the 140's systolic and the 90's diastolic with meds.  So the nurses have adjusted her fluid pull on dialysis which has helped a bit.  They have also increased her dialysis time by 2 hours; she is now on dialysis for 10 hours a night. We are going to do a 24 hour collection tomorrow to see if her remaining kidney is slowing down more.  Originally, we were supposed to go to Seattle for a team meeting on the 19th; however, with all that is going on, we have requested that it be sooner.  We are scheduled to go on the Feast of the Assumption of the Blessed Virgin Mary.  Please pray for safe travels.

Other updates:  Mariah is working with Make-a-Wish.  She has been working on a novel that she is hoping to have published.  This may happen for her; the details are still being sorted out. Writing is one of the things she enjoys doing while in bed.

Many of you have been asking for a saint for intercession for Mariah.  We asked her to choose a saint that she feels drawn to; Mariah has chosen St. Rita as her intercessory saint.  St. Rita pray for us! 

Keely has been battling and advocating for Medicare for Mariah for ESRD (end stage renal disease); however, it has taken an abnormally long time. Finally, after 6 months, her application was processed (the average time for processing paperwork for children with ESRD is around 30 days).  After receiving the call, we realized that all of the dates submitted by the hospitals were not included in the processing paperwork.  This threw off the backdated coverage.  We will be working on trying to get the correct backdates updated this week.

Please keep praying for Mariah; specifically that her BP come down, her appetite increase (she is very thin), that her nausea goes way (she is nauseated every day), and that the meeting this week with our health team goes well. Ask Our Lord for a complete healing for Mariah or transplant soon. 

Thank you all for your prayers; they keep us going.

Sacred Heart of Jesus we place all of our trust in You!  St. Rita pray for us!

The Lowman Family

Hi,

We are heading in for at least one vaccine if not two.  Please keep Mariah in prayer as her blood pressures have been high even with her meds on board.  Please pray that she does well and that her pressures come down.  We have been battling this for a few weeks now.

Thank you,

The Lowman family

We have been reading your messages; thank you for all of your prayers...they keep us going!

We were discharged from the ER on the morning of the 27th...2 hours of sleep had total.  We got home and finished getting ready for camping and left for our yearly out-of-service camping trip.  Nine of ten of Mariah's siblings were able to make it as well as spouses and all of our grandchildren!  There were so many amazing families also camping with us.  Prayerful, wonderful people.  We were able to do her dialysis in a cabin that had electricity - it was truly a blessing!  Mariah battled high blood pressures all weekend...keeping them at bay with her rescue medication.  She was able to hang out with friends, put her feet in the water and yes, even attend a dance.

We got home this evening.  We are still keeping blood pressures at bay with her rescue medication.  Please keep those prayers coming... We will message her PD team Monday and see if we can come up with another solution for her. 

God is so good... we are very grateful that we got to spend this weekend as a family with friends!  Also, I am very grateful for my adult children, their spouses and my son's girlfriend... they pitched in so much with set up, meals, tear down, and really caring for their sister.  When we had to hook her up at night they brought the games to the cabin. The morning her pressures were too high to get out of bed, they brought her breakfast and coffee and hung out with her and convinced me that she'd be much better resting outside by they water. I conceded, and of course we got a normal blood pressure that afternoon. :-)

Sacred Heart of Jesus we place all of our trust in You.

With grateful hearts,

The Lowman family

Oh where to start. Life and work have been rather overwhelming lately and we have not posted any updates for too long and now we have multiple in a day. 

So as previously updated her blood pressure was very high last night. Finally got that down and started dialysis. But at 3 am she was throwing up and couldn't stop. And of course her BP spiked. So they headed to the ER.

The hydrated her and got her pain under control and were about to be released.  But now her BP is going up again.  Could be frustration, she really wants to go camping.  But something is not right because her BP has been trending up for a while and we have been increasing her meds to control it. 

Thank you for the continued prayers, our little girl certainly needs them.

First, we would like to thank you for praying for our family, especially for Mariah.  Please pray specifically that she stays healthy enough to meet all of the requirements to get to transplant.

It has been a long while since we've posted because things are just slow and hard.  Our family got sick the end of May and it took us about 2 weeks to recover; however, Mariah coughed for 5 1/2 weeks.  We had to cancel her vaccines during that time as she was really not well.  An antibiotic and an anti-fungal medication later she was able to fully recover.

In June we had a bit of excitement.  I walked in the door and Elaina said, "Mom, Mariah is turning blue!"  I went in her room and she showed me her arms and hands, they were a grayish-blue.  So knowing that with low oxygen it is usually your lips and the nails of your hands and feet that turn blue; I checked.  Her lips were fine, the nails of her hands were blueish gray, but the nails of her feet were pink and she was breathing normally. Hmmm.  So I thought to myself, "I wonder if this is some strange condition you get with dialysis."  She showed me her legs and they were blueish gray as well.  I was so confused and Mariah was scared, so I called Seattle Children's and told them what I had observed and they said that they would have an on call Dr. call me back.  So while we were waiting, I heard the girls laughing and they called for me to come into Mariah's room again.  They said, "Mom, it's the dress!"  Mariah had gotten a new dress for church and the dye was leaching onto her skin, so much so that the dress dyed both her arms, hands, legs, her peritoneal dialysis catheter a dull gray blue.  Needless to say, I was so relieved, but then had to explain to the hospital why I was canceling the page.  ;-)

Mariah has good days and bad days and they are about even I'd say.  She is a very fragile; like a delicate flower.  Please, just pray we can make it through all of this.  

Last week we had another vaccine and she did okay with it.  She was very fatigued for about 2-3 days and slept a lot!  Oddly, the joints of her right foot swelled up for a few days. 

Tonight, we were packing for camping. We are planning to take all of her medical equipment with us. Out of the blue, Elaina calls me...  "Mariah is throwing up."  Her BP is high and her meds came up with her food.  We gave her a rescue medication.  She came out of her room a few minutes ago and said that her heart is racing and she feels dizzy.  BP is still high, and heart rate is up but both are lower than the last time I checked.  I am updating you while waiting for a call from the PD nurse.  This is our life right now.  Earlier today Mariah had a terrible migraine and couldn't eat all day.  She finally felt like eating and just an hour later it all comes up and here we are...

Well, we get to go to bed tonight; Dr. will check in with us in the a.m.

Thank you also for your donations to her medical fund. 

Thank you, thank you!

We are so grateful for all of you!

The past two weeks were pretty full with family happenings. Mariah was able to participate in an all day field trip!  We were so happy...   Her lil sibling had his first reconciliation.  Mixed in there were labs and 24 hour fluid collections. We had our end of year co-op Showcase and potluck awards and performances on Friday, the 17th. Two teen sibs rolled in from ND early Friday night as they were both not feeling well. :-(   Then Sunday, the 19th, we had lil sib's First Holy Communion; Yay! :-) That night we were preparing to go to Seattle for a Mariah's monthly check-up ...well...we were up all night with a VERY high BP episode, but Kale and I still managed to hit the road early and got her to her appointment Monday afternoon.  We then drove back home and got in late Monday night.

This week - dentist appointments for three sibs, catching up with homeschooling, play dates, a trip to the park, library, gardening and tons of housework. Mariah was able to go get yogurt with a friend she hadn't seen in a long while.  This friend made her a beautiful blanket.  Pictured.

Her BP is trending up.  We have increased her PD fill volume and she is back on high blood pressure medications. :-(

We have asked for clarification from Seattle Children's Hospital as we were told that the donor age was 18-40 years... U of W does the donor surgery and they turned a donor away saying that the donor needed to be 21.  Our generous donor was between 18-21. Ugh. So please pray that they allow those 18-21 to be tested as well.

We will be getting her next vaccination the 30th...please keep her in prayer. We are thinking of doing two instead of one to speed up the process so as to get to transplant sooner....pray for discernment.

Today, the 24th, is another rough day.  Mariah feels yucky, headache, and BP is high again.  Some days we feel so normal and then others we are reminded of where we are in this whole long process. 

Thank you for your prayers and support,

Love,

The Lowman Family

Just another photo to share.

Mariah is continuing to have mostly good days (except for missing her sister who is out seeing grandparents).  She has decent energy and even goes for multiple walks a day sometimes.  Not all are good, but mostly.

Mom and dad soldier on, trying to discern the path He has put before us.  Please keep Mariah and us in prayer as the journey still looks long.

Meanwhile, enjoy these beautiful photos her brother took on one walk.

Well, so far so good.  Mariah got her first vaccine last week and it seemed to go okay. We are scheduled to get one every two weeks until all are complete.  Please pray that this process continues to go smoothly and without incident.   We stay at the clinic for an hour afterwards and then stay in town for the day, just in case.  

Mariah is doing better on PD as well; her appetite is back... Yay!

She still has strange things pop up...the past two days one of her eyes has been swollen in the morning and seems to go down with Benadryl.  We don't know why.  So continue to pray for no reactions to anything for her.

Thank you for your prayers! Thank you for walking this journey with us! it brings us peace to know that we can rely on so many prayer warriors. 

With grateful hearts,

The Lowman Family

We are taking the next step in the transplant journey today and starting the first of the vaccinations.  Please keep our dear Mariah in prayer, for her safety, for no negative reactions as well as for us as we manage this stressful issue.  As we have shared, Mariah reacts to so many things, so pray that she be protected and for guidance for us and so that we always know and follow His divine will.

It's been awhile since we've updated; it's because we are plugging back into life again. We had an amazing double win at HFCS which we were so blessed to be a part of, the end of year BB pizza party, we started back in our homeschooling co-op, Keely started teaching CGS at St. Michael's and St. Rita's, We have been blessed to be surrounded by family and community again. Mariah has been excited to see her friends again! She has been trying to get back to schooling.  We have decided that we just need to drop a class or two.  She has good days and bad days; for that reason homeschooling is a blessing. 

One day at co-op she attended all of her classes and did really well; one day she didn't get through even 1/2 a class and another she made it through the day but felt generally yucky. Keely called Seattle on her not-so-great day.  It was an eye-opener for her when they said, "This is what you can expect with end stage renal failure." Sometimes those are the things that take a bit to set in; it is now our normal.  We celebrate the good days and just go with the flow on the down days.  Overall....it's good. Peritoneal dialysis is now going well; the Claria machine is the best!  We have a routine and the nurses and Dr. in Seattle work with us to adjust her dialysis if we have "life" happening. 

The plan for Mariah: get caught up on her vaccines so we can be active on the transplant list.  We have already met with infectious disease specialists in Seattle. They have negotiated with us and we have come down to the absolutely necessary ones. We have a meeting with her Primary Care Provider Thursday.  Mariah got an epi pen; for the just-in-case reactions.  The reason we hadn't gotten her vaccinated initially was because of her fragile health and reactivity - some kids are just sensitive.  So now we start down this very tenuous road. Truthfully, our souls are heavy.  So we will go slowly and hope for the best. To be active on the list for transplant... this is our only option...to save her life.  Please keep her safety in your prayers, and us as well so that we are able to make the right decisions for her.    

An amazing day for Mariah today.  We all went to the season ending tournament for her girls basketball team.  They have dedicated this season to Mariah since she couldn't play this year, her 8th grade.  An amazing bunch of teenage girls that rallied around our Mariah, prayed for her, sent her spiritual bouquets, and made her feel so welcome the few games she was able to attend.

So tonight in the championship game (which our amazing Hawks won in a thriller) they introduced the starting lineups and added Mariah as an extra, introduced as the girl they have played this entire season for, and Mariah got to run out on the court with them.  Brought a tear to this old man's eye.  

So proud of these girls, they are good, loving and kind kids.  And they are champions as well.  Keely coached this team for 3 years now, leading them to 3rd place 2 years ago, 4th last year and even though she had to make the tough decision to give this team over to someone else to coach this year, they are still her team at heart.  She helped them grow as young ladies and as basketball players.  And they showed it all season and especially tonight.  Tonight they are all champions, and better yet, they are beautiful people.

God is good.

Sorry about the undescriptive title.  My creativity left my brain.  

We did a quick trip to Seattle on Tuesday, there and back in one day with 2 appointments.  They gave us a new PD machine, usually used more with toddlers and infants.  Funny how different it is, the other one was a touch screen and very verbose, telling you exactly what to do and how to do it.  This one has a green button, a red button, an enter button and an up and down.  And it gives very little instruction.  I guess it is good that Keely knows what she is doing with all the hookup, connections, drain bags and such.  I was able to help the PD nurse as she showed us how to use it.  She was trying to get it to accept a setting and kept pressing the green button, but it wanted the enter instead.  Being a techie brain, I knew what it wanted and helped her get it working.

The new device seems to be working for Mariah much better.  It allows us to skip the initial drain which was dehydrating her on the other machine.  And this one doesn't try to do the full drain in the middle of the night so we are able to sleep better as well.  The old machine was definitely keeping Keely from getting any rest.

Mariah is doing much better being home, much better than her last few weeks in Seattle.  She is able to go for walks with her sister, eats better and is much happier being at home.  I even made her do some chores today.

So thank you all for the prayers.  Keep praying for her future kidney donor.  We are praying for a perfect match.  God is good!  Hope everyone had a blessed Easter.  Hopefully Lent has passed and we can be home where there is gardening to do, mountain flowers to experience in the spring and family to enjoy.

Just a note to share these beautiful watercolors Mariah did.  She is feeling much better today, the machine worked last night, so we all got some needed rest.

Mariah is out of surgery and doing well, although still a bit goofy from the anesthesia.  Thank you for all the prayers for her.

Also, her brother found these links to help those who are interested in being a kidney donor.  A couple of caveats, for pediatric donation, they usually limit the donor age to 40.  They may make exceptions for a very healthy donor, but that is the general rule for donating to kids.  Second we are looking for those without the covid vax.  Not looking for controversy here, but she isn't and the kidney should match her.  

First step is matching blood type B (pos or neg doesn't matter, just the type).  Then you have to go through the UW hospital to start the process at the link below or by calling (206)-598-3627 (for the older generation).
https://www.uwmedicine.org/specialties/transplant/living-kidney-donor-program

A helpful video
https://youtu.be/LmkBDfj11hM?feature=shared

Another possibility is to do a donor swap, if not a match for Mariah, one can be put on a list and can swap with a different patient if they have a donor that matches Mariah.

Thank you all again for your generosity and specifically for your prayers.  We pray for you as well and hope you have a blessed Good Friday and an even more blessed Easter!

Tomorrow, Good Friday, Mariah will have her surgery to get her Hemodialysis port out. I wish we could say that it is because everything in going smoothly; this week at home has been a challenge. It is definitely Lent. She is losing weight daily, has had medication reactions (we don't know to which), and we are opting to switch to another Peritoneal Dialysis Machine as the one we have is just too rough on her. We will travel out to Seattle to pick it up and be trained on it next Tuesday. Until then, we are continuing to battle with this machine and when it's just too much we switch to manual PD (basically using gravity with the dialysis bags and drains instead of the machine). It is much more gentle, but is very time consuming.  Her medical care right now is taking a great deal of time and her days are constantly fluctuating.  Today was a hard day; she didn't get out of bed much. We will be doing manual PD tonight as last night was very hard and we had to end her treatment early.  Her surgery is scheduled for 1:30 in the afternoon tomorrow. 

Thank you very much for all of your prayers! Please keep them coming. We just want her to be well enough to finish the finial steps for transplant and be active on the list. Right now we are gaining wait time, which is good, but the goal is to be active. To do that, we have to get her more consistent and stable with dialysis.  

I will end on a funny note:

When Kale came to pick us up in Seattle he noticed that the beds at the Ronald were rock hard.  I told him that we just turn over and change positions a lot at night to help with that.  When we were cleaning the room before leaving he found two remotes for the beds.  He said, "Hey, these are sleep number beds and they are turned up to 100." 

When we first arrived last month, I noticed the remotes, but didn't have my glasses on, I said to Mariah,  "Maybe those have a heater control in them".... I didn't think about it again as I was unpacking.  Mariah turned them all the way up because she was cold, but when nothing happened she stuck them in the bottom draw and we both forgot about them. Nearly a month later... we were packed, the room was cleaned, and we were ready to go when Kale found the remotes and adjusted the beds; they were the most comfortable beds ever! He just shook his head and laughed ... Lent ;-)

It has been a long week! We managed to be successful at Peritoneal Dialysis most of the nights at the Ronald McDonald House.  We had to abort the treatment only one night.  The machine has a programing glitch that is meant to protect the patient; however, for Mariah is causes her pain. We had to move to what they call tidal PD as the regular settings drain her too much and hurt her.  Tidal works okay except on the initial drain.  If we can get past that, then we are okay. 

Kale and Elaina came yesterday to get us.  They got to see the setup.

We went to a beautiful 2 hour chanted Palm Sunday Mass before coming home. 

Once home, the family was all here to greet us.  The adult kids had a grand meal cooked and then everyone hung around for awhile to play games.  I got to see all of our grandchildren and my kiddos at home.  It was nice.  They decorated the house with welcome home signs at met us out on the deck....Mariah felt like a VIP:-)

Tonight, the PD machine was giving us trouble again.  We tried to get the initial drain cycle to work and bypass due to pain; however, after trying until 2 am we decided enough was enough.  I have a call in to the PD team in Seattle.  Hopefully we can get this figured out.  Mariah and I are very frustrated.  We like PD as her BP is much better on it; we just need it to work consistently.  Please pray that it starts to go smoothly every night without pain.

Last Friday, we cancelled her surgery to remove the HD (hemodialysis) catheter as we feel like we need to get PD working for us consistently before removing her other dialysis option.  We will have the removal surgery in Spokane once we are ready.

Thank you for your prayers and support!  We are very appreciative!  It is 3 am...I am heading to bed.  God Bless!

The older kids threw Mariah (and us) a party when we got home. Lights, streamers, balloons and food.

We are so blessed with our big family.

Hello from Seattle,

We are moving forward ever so slowly.  Today marks the second night of Peritoneal Dialysis done in the Ronald McDonald House (home away from home).  This form of dialysis has been much easier on Mariah and she already prefers it. It consists of 8 hours of treatment a night where the dialysate fluid is pumped into her abdomen and bathes the intestines. Through osmosis and diffusion the solution pulls toxins and excess fluid through the peritoneal membrane.  The fluid "dwells" there for about an hour so the exchange can occur, then it is pumped out, drained, and replaced with another round of fluid.  This happens for 7 cycles over the course of 8 hours during the night while she sleeps.  Although last night (our first night on our own) we didn't sleep all that well as it was our first trial.  We were up until midnight and then I got up at 2 and 4 to check on her and then disconnected at 4:30 as we started early.  

We had our team meeting with the PD staff today.  Team consisted of Dr. Munchi (aka Raj as he likes to be called), Nurse Wendy, Social worker Elizabeth, and our absolutely favorite dietitian, Hector (Mariah likes Hector because he makes the kidney diet bearable).  He suggests things like gummie bear fiber and vanilla Renastep health drinks. Then of course Kale, myself, and our very own VIP (as Raj refers to her) Mariah.

Summary: We are still tweaking her dialysis and her high BP medications. We will continue to do so throughout the week as last week Mariah had VERY high pressures everynight and we had to give her rescue medications 4 nights in a row.  Needless to say we slept very little last week. Surgery is on Friday to remove the hemodialysis catheter.  We are currently waiting on supplies (guess that there is a shortage on this side of the US for her dialysis machine cassettes). Yikes. Kinda need those.  Hopefully they will be in soon.  Kale is supposed to be getting supplies delivered to our home on Thursday of this week in preparation to go home.   

We (Mariah and I) actually have tomorrow off...no going to the hospital for anything...Yay!

If all goes well, we will be heading home on Sunday.  Thank you for all of your prayers! 

Oh, and we got an official letter saying that Mariah is officially on hold on the transplant list for deceased donors.  We have to finish a few things before she is able to go active.  Also, for a live donor, one of the parameters here  is that the donor be preferably under the age of 40 and over the age of 18. More to come....

Goodnight.  Thank you for your generosity and prayers!

Got Keely and Mariah on their first Uber ride today to get get to Mass.  They are going to the beautiful church of the Blessed Sacrament in Seattle.  Glory to God, there is such an amazing church nearby.  Beautiful liturgy, beautiful building, very fitting for the worship of our Savior.

Today the readings are about rending our hearts, not our garments.  And as Jesus said in the Gospel, unless a grain of wheat falls to the ground and dies, it remains but a grain of wheat.  But if it dies, it produces much fruit.  This ties into our lives deeply, throughout our cancer journeys as well as Mariah's current one.  Our little girl, suffering so much, giving up so much of life as she faces this.  And Keely giving up so much of her life for all our children, but especially as they are sick.  Giving up the things she loves, coaching basketball, springtime in the mountains, being around her family; all to care for Mariah and learning how to manage her dialysis.  

Sometimes it is difficult to understand why little ones suffer, but God in his wisdom allows it because in this way, He calls us to closely imitate himself, to love as He loved.  It is often when we see the suffering of children that we learn to give so freely, to love so much, to go beyond what we imagined we could ever do. 

So I thank God for all of you, praying, donating, loving and giving of yourselves.  You have been so kind and generous.  Please keep praying for Mariah and for us, we still have have a long ways to go.  Pray for miraculous healing if it be God's will.  Pray for wisdom for us as we navigate this journey.  And again, I pray for all of you and thank God for you in our lives. 

Mariah came down with the stomach bug that Keely had last weekend and that has delayed her start on PD. So she had to do the hemo version again and as usual after HD she had super high blood pressures. It was a long stressful night for Keely and Mariah.

So now they are going to start the trial run on Monday morning and then do the first run on Monday evening.

Also a note about donations through GiveSendGo as several people have asked. There is a 3% card processing fee. That does not go to GiveSendGo, but to the processing company. Pretty standard fees, anytime you use a credit card in a store or gas station, someone pays that 3% fee. Venmo, paypal and other sites charge fees as well.

GSG doesn't charge to use the site, but I opted for 1% to go to the site because it is a great Christian alternative to other non-Christian sites.

Hey, this is Mariah. Just feeling super homesick and wishing I was back in Idaho. Today's been rough, but I wanted to thank everyone who's helping me through all this.So thank you, so much.

We're doing our first round of PD tomorrow. The supplies arrived at the RMH today...seventeen boxes worth.

Walking still wears me out, but I was able to manage without a wheelchair this morning, which was an improvement.

I just wanted to say thank you to my basketball team. You've been so kind and supportive with all the shirts and the gifts and messages. I wish I could've been there at the game this week. I miss you all and love you guys so so so much!!!

-Mariah

It has been a struggle for both lately.  After dialysis the last two times, Mariah's blood pressure has been very high.  They are probably taking too much fluid off during dialysis and so that has been Mariah and added lots of stress for Keely.  And our schedule just got changed again.  They are going to start her on PD on Friday, but if everything goes well they want to take out the HD catheter early next week.  So another surgery and recovery for our little girl.

So they likely won't be coming home for another week.  Pray for us all, for wisdom, guidance, strength and the grace to be open to God's will in our lives.

Thank you all so much for the immense generosity.  We pray for all of you and thank God for each and every one.  You are such a blessing.

Took the kids over to Seattle to see Keely and Mariah.  We went out and did a bit of tourist-ing, Dom wanted to see a zoo, so we did the Woodland Park Zoo.  It was cold and rainy but at least we didn't have to worry about long lines.  It was very enjoyable even if some of the big cats were missing, both the tiger and jaguar were out for medical procedures.  The grizzlies were entertaining and the giraffe surpassed our expectations, one doesn't appreciate how tall they are until seeing them in person.

It was a quick trip, but very good for the family to be together again.  The Ronald McDonald house is such a blessing.  The provide a very good base for families that have extended stays at the hospital.  We are very thankful for them.

I can't believe it's already Thursday!  As it turned out we didn't end up discharging last Saturday; we didn't discharge until Monday!  Our Mariah is a reactor to medications.  She ended up reacting to three different medications last weekend, and of course her side effects were in the "very rare" category, but this is nothing new to us. It is new to the Dr.s and nurses here who are getting to know how Mariah's body works though. ;-)  Mariah did hemodialysis this week Wed. outpatient.  Our days consist of dialysis and training; both are 4 hours long. Dialysis runs MWF and Caregiver training for Peritoneal Dialysis is M-F.  We have learned how to take an Uber....yep, first time for everything...and I push Mariah in a wheelchair to the hospital on nice days as it's only 10 minutes away.  I discovered that there is a grocery store right next door.  I have been able to cook her some homemade meals following the CKD (chronic kidney disease) diet.

One of the most beautiful things about Seattle is the flora and fauna.  The cherry blossoms are blooming everywhere.  We have a humming bird and nest right outside of our window. The crocuses outside are blooming. 

We are so thankful for the Ronald McDonald House!  It is so nice to have a place to go that is close to the hospital. The longer we are here, we realize how thankful we are for the cross we've been given. Other people have such heavy crosses.  Example of daily conversation:  lil boy comes and sits at our table..."Hi, my name is Mathew."  I say, " Well, hello Mathew." He says, " I have good news, my brain tumor is shrinking!"  Mariah and I give him a high five...  

Another family here has a teen that needs a heart and kidney transplant.  He is in the ICU and machines are doing everything for him right now. Please pray for Zeke and his beautiful family.  

We've met two more families that have had their kidney transplants and the kids are looking great!   They are in the process of appointments and med adjustments and have to be close to the hospital for three months!  We look at that and see hope....hope to be on the other side of all of this.  

Babies and kids everywhere...it's good, there is life; even when kids are going through rough times it is a testament to family.  It's beautiful.  Beautiful families.  Speaking of family...Mariah and I miss ours so much!  I think Kale and the kids may be coming to see us this weekend.  We are really looking forward to it.

Thank you for all of your prayers and support.  Please pray that Mariah is able to gain a lil more strength and endurance.  She tires easily after walking a few hundred feet so I take her in a wheelchair most places.  Please keep the families at the Ronald House in prayer...some of their crosses are so heavy!  God knows who those kids are when you pray for them.  We are so grateful to have such an amazingly supportive community; prayer warriors.... 

Our hearts are full!

Love,

Kale, Keely, Mariah, and family

Please pray that she stay strong, through all the stress, uncertainty and difficulty.  Give her peace and the grace to travel this road given to her.  

Apologies for not updating for awhile. It seems like we have been here forever, even though it has only been three days!  Mariah had her PD catheter placement surgery on Thursday and is working on recovery which includes pain management.  Today she did her first real walk on our floor.  Some of our nurses cheered for her as she walked by them as she has been really struggling with pain.  Today I think we have gotten it under control. Yay!

We are anticipating discharge tomorrow.  Today I was able to confirm a room for us at the Ronald McDonald House.  The Ronald McDonald House is only a 10 minute walk from the hospital which is nice.  Today it was not raining in Seattle so I walked to and from...it was nice to get some fresh air.

Mariah had her first hemodialysis at Seattle Children's yesterday which went pretty well.  While she is doing dialysis, I sneak away and do training with the PD nurse.  I was able to schedule transportation to and from the Ronald for this next week for outpatient dialysis. 

We really miss everyone at home!  This is going to be a very long 2-3 weeks! 

Sending our Love from Seattle,

Keely and Mariah

Mariah is asking for prayers, the surgery to place the PD catheter was successful but she is dealing with lots of pain post surgery.   Poor kiddo is frustrated and bored, tired of the technology distractions and missing family.  The nurses thought she was doing fine because she is rather stoic and dealing with the pain by not moving.  She doesn't complain much, so they took that as her doing fine.  Keely had to get her to speak up and voice her issues.

She still has to do the hemodialysis for 2 weeks will the wound heals.  So pray they are able to manage the pain. 

Sorry this update took so long, been a chaotic week, dialysis in Spokane twice and then the surgery got moved up, so we planned to drive to Seattle.  But a snowstorm her and in the pass by Seattle made driving unsafe, so we adjusted again and flew them out at 5am for an 11am surgery.  

It has been a whirlwind of a week!  After Mariah's catheter placement on Monday she has had 4 dialysis sessions which have gone well. We started slow at an hour a time, then added iron, then 2 hours and now a red blood cell boost and three hours. After dialysis she is really wiped out.  Strange things like sweats low grade temp and just feeling overall malaise.

On the bright side we have had several things happening all at once moving towards transplant.  On Tuesday the team from Seattle okayed us for transplant with Seattle Children's provided that she catch up on some of her vaccinations. We have had communications with them via zoom and MyChart. We contacted and got a direct blood donation set up for Mariah through Sacred Heart. Our home visit to assess her environment for Peritoneal Dialysis placement is on Tues. We got a call yesterday that her surgeon in Seattle has an opening next week Thursday for Peritoneal Dialysis placement.  And hopefully we can go home today to rest up.

Hats off to the people who are holding down the fort at home! My contractor/construction sons have initiated the revamping Mariah's bathroom.  The family moved her room upstairs so that we can keep a closer eye on her.  Her sister has been cooking, cleaning, decorating, and hoping for Mariah to get home soon.  Dad started his new job on Monday after being unemployed for two months.  God is so good! Our adult boys and daughters in law have spent every night this past making sure we are ready for our visit on Tuesday and taking care of the littles at home. We are so grateful and blessed!

Thank you... to our visitors, our special nurses; especially Nichole who is a bright light in our days in the hospital.  Our priest, Fr. Jerome and his driver who have been up here several times to anoint Mariah with each hospital visit. So many wonderful people who are making the hard days better, you know who you are!  Our co-op family for gathering frozen meals and sending cards.  Our HFCS family for the prayers, love, support, and keeping a smile on Mariah's face.  Also, thank you mostly for all of your prayers as sometimes it is hard to pray when your are in the thick of things. We are so blessed with a community of believers who cover us daily.  Thank you, Thank you!

You have no idea how much all of your prayers and donations have comforted me (Mariah) throughout all of this. I had no idea I knew so many wonderful, loving people, and words do not begin to describe how grateful I am to every one of you. Knowing I have so many prayers to fall back on is really a comfort to me and my family through this time. Thank you so much!!!

-Mariah:)

Last week was rough, Mariah had a cold and ended up in Sacred Heart in Spokane.  She dropped into stage 5 renal failure.

This week has been much better for her since we returned home from Seattle.  Eating good home cooked meals and sleeping in her own bed seem to be good medicine.  Yesterday we had a visit to her kidney doc, her labs were stable. Her energy is better and she is even a bit perky.  Please keep those prayers coming, it is good for our hearts to see her smiling.

At Sacred Heart, the decorated ceiling tiles are painted by childhood cancer patients.  During her January stay in Sacred Heart she finally got to paint her tile as she was too young during her cancer treatment.

She chose to paint sparrows, which turn out to have quite a bit of symbolism.  Hope and finding joy in the simple things are two that seem to fit with Mariah's journey.  

We returned from Seattle Children's Hospital on Feb. 8th where we met with the transplant team. Over the course of two days we had 12 appointments to complete the preliminary workup. We are awaiting approval to be accepted for transplant. Until transplant is possible, we are anticipating that Mariah will need dialysis. We are opting for peritoneal dialysis. This type of dialysis will require that Kale and I go to Seattle with Mariah for two weeks while it is placed and we are trained. This is just the beginning of what we am coming to understand as the long road to transplant.