We have been doing very well!  Kale came to Seattle for a week and I got to go spend some time with the kids at home in ID.

Tomorrow is the big biopsy day! This will allow the doctors to see on a microscopic level what her kidney is up to.  We are praying for no signs of rejection.  The biopsy can pick up signs of rejection before it is evident in bodily symptoms.  If this looks good, we may be able to come home this week!!!!  We have been discussing this with the team here. We could potentially do telemed from ID and go to Spokane for her many lab draws next month. 

Friday is the Feast of the Sacred Heart of Jesus!  Our family has had a devotion to the Sacred Heart since 2011 when Mariah was initially diagnosed.  How fitting it would be if we were able to come home this week. 

Prayer requests: 

• That Mariah's biopsy goes well; no rejection. (and we get to come home)
• For all of the kids and families here at the Ronald McDonald House.  Some are here for years receiving medical treatment for their kids. For perseverance in suffering and healing. 
• For my Dad, Ray, who had surgery this past Friday in ND.

Thank you all for your prayers!  Sacred Heart of Jesus we place all of our trust in You!  St. Rita and St. Mara Goretti pray for us!

Love,

Keely and Mariah

First, thank you for all of your prayer intentions!  Her Tacro today is 11.2 - Perfect!  (goal is between 10-12)

My girl is back!  She walked to the hospital, pharmacy, then came back to the Ron Don (Ronald McDonald House) and wrote for a bit (starting her second novel).  She actually went for another walk today; we sat out in the garden (it's 80 degrees here) and had ice cream!  The high Tacro symptoms went away except for her kidney is still a little tender. Please cover that kidney in prayer so that it just keeps on a trucking.  Her creatinine was 1.2 which is good, but we are still shooting for below 1.  All other labs look pretty good. 

Kale and Johnny are driving out to see us and should be arriving shortly.  Kale and I are going to switch for a bit so that I can go home to see the kids.  :-)

Thank you for keeping all of the kiddos at the Ronald McDonald House in your prayers!  Sacred Heart of Jesus we place all of our trust in You!  St. Rita and St. Maria Goretti, pray for us!

Kale, Keely, Mariah, and family  

On Wednesday Mariah was a part of a motivational event in CDA through zoom; the Lake CDA Summit.  Make a Wish did a promotional piece so that attendees could pre-order her book. It is set to be published the end of June as her wish request.  They have 120 orders as of Wednesday!  She was so excited.  Make a Wish has really been wonderful.  To help her get through all of the days in bed, they sent her several books to read, gave her a mug that reads "One more chapter" and a T-shirt that said, "I am a writer, anything that you say or do can be used in a story."  I will try to include the picture of her and her mug.  It was taken earlier in the week when she was feeling better.  

Tacrolimus - a love/hate drug

Tues. her Tacro was high at 14.4 (target is between 10-12).  Wednesday she started feeling off - having no energy and wanting to be in bed.  Thursday was worse.  Barely could walk to the hospital and back for labs and had to stop several times to catch her breath. We decreased her dose. Thursday evening she looked really rough, couldn't think clearly, her arms felt heavy and she said her new kidney didn't feel good.  I called.  The Tacro level was 18.9!!!!  Tacro is good when it suppresses rejection; however, at high levels it can also be toxic to the kidney. We were hoping to go home this weekend but that's not an option right now.  We held the dose last night and decreased it to 5 mg this morning (it's 2x a day).  Today she is feeling a little better; honestly, not looking much better, but it's something.  I insisted on labs tomorrow!  And through my very limited knowledge tried to find some research articles on Tacro.  What I discovered was that it has a half life in the blood of 12 hrs. in liver transplant patients, 16 hours in kidney transplant patients and 40 hours in normal patients; however, it can vary greatly individually.  Also, only 2-4% is cleared through the kidney; mostly cleared through fecal matter (94%ish) .  It can be toxic to kidneys in high doses, but is great for immunosuppression in lower doses.  It's a balancing act.  It can also be neuro toxic in high doses.

Please pray for balance.  Pray for Mariah during these ups and downs and for Kale and I to have the grace to ask the right questions and to insist on what is best for her.

Thank you again for everything! 

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

Keely, Kale, and Mariah

Good afternoon,

We had labs and our clinic with the transplant team today.  Mariah was under the weather this weekend.  Yesterday, she was a bit better so we went grocery shopping.  That lil trip just wore her out.  Today she is feeling a bit worse.  Just walking to the hospital and back today completely wiped her out.  It seems like it's one step forward, two steps back. She was just perking up and then had the stent surgery. She recovered from that and then we went home, which was wonderful. Upon returning, she got sick.  It is reminiscent of when she was on dialysis and every little cold took her down and recovery is much longer.  I think it will be like that always, being on the anti-rejection medications. I keep having to remind myself of how fragile this kiddo is.  

Her labs today:

• Creatinine is in a good place 1.2 - still waiting for it to drop below 1 (that magical number)
• Mg - very low; starting a supplement
• Phosphorus - low, supplementing
• Hematocrit and hemoglobin fell just below normal again - Ugh 
• Tacro 14.4 - out of the ballpark! That's why we are here....the medication ups and downs ;-)
• Nausea - better, but not resolved.  The Anna Schindler Foundation is ordering her a wrist band that uses pressure points to battle nausea.  We are looking forward to that; especially, if it helps her get off of her anti- nausea meds. (everything has side effects;)

The very good news is that her book is progressing through Make-A-Wish and should be available by the end of June.  Mariah is very much looking forward to that.  

We miss everyone back home so much!!  We are looking forward to days of feeling well enough to do longer outings. We will be here through the end of June.  They are planning a biopsy for around the 21st to have a microscopic look at her kidney and to better assess any signs of rejection.  We are hoping that goes well; if so, we may be home in July.  If not, we will be in Seattle through July as well.  Please, please pray we get to come home!

Mariah said today, "Now I understand why Nevada always ran home!" (Nevada was grandpa's horse that would saunter out, but always run back home.) 

Thank you for keeping all of the kids at the Ronald McDonald House in your prayers, there are so many sweet kiddos here! Please send a few extra prayers Mariah's way this week. We are in the two steps back phase.  

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

Keely and Mariah 

Mariah caught her first post transplant illness; it appears to be a cold with a low grade fever. Labs and clinic aren't until Tuesday so we are hoping with tea, rest, and good food she'll perk up soon.

Representatives from Make a Wish called and are working with her to put the final touches on her book. She is so excited! More details to come.

Thank you for all of your prayers!  Sacred Heart of Jesus we place all of our trust in You!  St. Rita and St. Monica, pray for us!

Blessings,

Keely and Mariah

Last Thursday we were cleared to go home for the Memorial Day weekend.  Jim drove us to Idaho.  Mariah rode in the backseat with his black lab Jasper.  It was not very comfortable for her as she was 24 hours out of surgery and still on pain medication, but the desire to go home was strong.  Her labs before we left indicated that her creatinine was at 1.2 which was just about where we wanted it; however, the Tacrolimus level in her blood had dropped.  So while we were driving we got a call saying that we needed to increase it again once we got home. 

It was wonderful to sleep in our own beds, see the kids and the grand-kids, spend time in the yard and garden.  Mariah really missed Elaina and even had a friend over for a bit. We didn't go many places as her WBC count is low and we didn't want her to get sick.  We had all the family out to our house (everyone was healthy; Yay!) The days just flew too fast.  Kale got his commuter car ready for me and I drove back to Seattle on Memorial Day; it is nice to have a car here. 

We had labs and clinic today.  The Team was so surprised to see how well she was doing!  Her Hemoglobin, RBC's, and Hematocrit finally hit the low end of normal!!!  Her creatinine went back up a bit to 1.4, but we think that is because her Tacrolimus overshot the mark! She was at 13.5 (goal is between 10-12) so now we can start slowly decreasing the Tacro!  Mariah has mild tremors because of the high level of Tacro. We are hoping that the levels in her blood stabilize so that we can decrease it and find the sweet spot.  Her Mg is low but that is because the Tacro is high so as we decrease it her Mg should normalize as well. Phosphorus is a lil low too, but that is a great excuse to increase her dairy and eat some ice cream. ;-)  Nausea is finally under control! The team said, "We don't know what is in that well water and ID fresh air, but it did wonders for Mariah." 

Thank you so much for all of your prayers!  Wow, what a difference from last week.  No pain, no nausea, tubes/stents out, she is starting to eat better, blood work is still trending in a positive direction, and fatigue is slowly dissipating.  The team said that it is possible to go home the end of June instead of the third week in July, but they are not promising anything. That is our hope.  It is our goal.  So we will aim for that. Again, thank you for your prayers.  Please keep all of the kids and families at the Ronald McDonald House in prayer as well.

Sacred Heart of Jesus we place all of our trust in You!  St. Rita and St. Maria Goretti Pray for us.

Keely and Mariah 

We got up at 5:30 this morning, and were at the hospital by 6:45 am for surgery.  Mariah had her stent and peritoneal dialysis catheter out today.  Surgery was about an 1 hour and 15 minutes and went well.  She was put under a general anesthesia.  Our only hiccups were that during surgery her BP went a little too low so they had to give her something to raise it; consequently, her BP was 157/114 coming out of surgery. And in true Mariah style, she developed a weird rash (probably due to the intro of the new BP med) We had to wait in recovery until her body filtered it out. We were out of surgery between 9:30 and 10 and back at the Ronald McDonald House by around 12:30ish.

  My brother, Jim, came up from CA on his way through to ND and hung out with us while we were waiting for her prescriptions. He also gave us a lift back to the House and picked up lunch and brought it back. 

Mariah is very wiped out.  I gave her some pain medication and she has been sleeping every since. She needs it...

On a positive note: her blood work keeps looking better.  The trends are still all in the right direction; just very slow!  Her hemoglobin and hematocrit are just about in the normal range!  Her red blood cells are still slowly climbing as well.  If her blood work looks good tomorrow, we may be able to come home for a few days. Yay!  

Things to pray for now:  her creatinine is still hanging out at 1.4; we really need it below 1. And she is still nauseous every single day, if you could pray that she is able to eat without nausea.

The trajectory is still positive overall! And as of today, she is tube and stent free!  I am looking forward to a normal life for her and I am sure that she feels very much the same way. The wrap up for the next two months is just labs and meds. ;-)

Thank you everyone for your prayer and support!  Sacred Heart of Jesus, we place all of my trust in You! 

Keely and Mariah 

More good news.  Mariah's Tacrolimus levels are now within normal limits and came in at 10.4.  Her levels related to her red blood cells are also continuing to climb; however, very slowly still.  Her EKG came back normally. 

She is still struggling with food and nausea.  One day she told me that her sense of smell is so strong that she can smell the metal of her keys sitting across the table from her. We asked the transplant team if this is normal or if they had seen this before and they confirmed that, yes, they have.  When someone's body goes from kidney failure to their kidney functioning again, the sense of taste and smell sometimes increases significantly.  It's so strong right now for Mariah that she has trouble walking through a grocery store...especially the deli or meat sections.  She also has trouble being down in the communal kitchen at mealtime as the smells are so strong for her.  

Hoping that in the next few weeks her hematocrit, hemoglobin, and RBC's will continue to increase. We are also hoping that her WBC's come up a bit and that her tacro level stays within the parameters of 10-12.  Also, her creatinine is trending in a good direction at 1.4 but needs to be below 1.  Please pray for things to continue in the right direction.  We are not getting labs for four days (the longest stretch so far between labs). Labs Tuesday.  Surgery on Wednesday to remove the stent between her kidney and bladder and to remove the peritoneal dialysis catheter.  Surgery should be outpatient on Wednesday. 

Thank you for all of your prayers!

Love, 

Keely and Mariah

I hope everyone had a very Happy Mother's Day!

Today we had labs, an EKG, and ultrasound, and clinic.  It was a very busy day.  Results of the labs were positive.  Everything seems to be trending in the right direction.  It is moving very slowly; however, her body is taking over in the production of making red blood cells. We are not going to give Darbe injections any more to boost the RBCs as there is an indication that her kidney is signaling her bone marrow to produce them on it's own now!  It may take a few weeks before we can see a really good increase, but the best news is that it is happening! On another very positive note; her creatinine is down to 1.4 (normal is below 1) that is also a slow improvement.  That said, we do not have to do a biopsy this week!!! Yay!

We are waiting on the results of the EKG.  The reason we are doing this is that one of the anti-nausea medications that she has been on consistently for the past several years can cause disruptions in heart rhythm. They just want to make sure that it isn't happening in her case.

Mariah's biggest hurdle right now is nausea. Since Thursday she has been nauseous, had dry heaves, or thrown up every morning.  The smell of food makes her sick, so as you can imagine, just getting her to eat has been a challenge. She averages two meals a day; however, yesterday only ate one.  We are trying to improve this and get her to eat more protein.  

Tacro (anti-rejection med) was increased again yesterday to 7 mg.  The levels in her blood are starting to climb; however, very, very, slowly.  They want her at 12 and today her level was 9.2.  We had to switch form of the other anti-rejection med (MMF) to a slow release instead of a quick release version due to the increase in stomach upset, reflux, and nausea. 

We also took her off of Mg as that can increase stomach upset. Her Mg is low; however, since tacro tends to dump Mg from the body, we learned that kidney transplant patient's levels of Mg is considered normal at very low levels compared to the average person. 

Specific prayer requests for Mariah:  A continued increase of her red blood cell production, hematocrit, and hemoglobin. For her nausea to completely go away and her appetite to come back. Her creatinine to come down below 1. Successful surgery on the 21st for the removal of the kidney stent and her PD catheter. 

Other Prayer Requests: All of the kiddos here at Seattle Children's Hospital.  This week especially, there is a young lady,T, who has inoperable brain cancer and is in treatment. Pray for T's strength and cure. 

Thank you prayer warriors!  I know that your prayers make a difference! Thank you for praying for Mariah and the other kiddos here; especially, for kids who have no one to pray for them. 

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

Love,

Keely and Mariah 

Tomorrow, May 8th, is Confirmation in Coeur d Alene; however, Mariah will not be able to attend. She is really saddened. This is one thing among so many others that she has had to postpone due to her medical journey. Please keep all of the kiddos getting Confirmed tomorrow in North Idaho in your prayers.

Lab Results:

Creatinine came down a smidge so no biopsy! Yay! Glucose came back down into the normal range!  These are steps in the right direction; the result of your prayers over the weekend!

Her hematocrit and hemoglobin are really low as Kale had mentioned in the previous post; therefore, instead of a transfusion we are giving her an injection to boost the red blood cell production until her new kidney signals her bone marrow to create new red blood cells.  Sometimes it takes awhile for the new kidney to wake up fully.  Mariah is very tired as these cells are the ones in charge of carrying oxygen throughout the body.  

Side effects:  This is probably one of the hardest things for us.  Her body does the weird and unexpected things.  A day ago she said, "My tongue is splitting."  My reaction, "What!" Sure enough, I looked and the top surface of her tongue had a split. We did a little research and it's is called a geographic tongue. It can be the result of a medication.  During transplant she was very itchy; she was on so many new medications we had no idea what was causing what, so they had to treat the symptoms with Benadryl.  There are only two medications that I have found shown to cause this. One is chlorhexidine which is a surgery prep scrub; the other she has never had.  She showered with chlorhexidine twice before surgery and they did sponge bathes with it once a day every day while in the hospital.  Oddly enough, it can also be used orally which to our knowledge did not happen with her.  Her Dr. said it is very odd that she would get this side effect if it was not used orally. But this is Mariah we are talking about; her body always does the unexpected.  So they are stumped. They couldn't answer us as to why it happened or if it will go away, get worse, heal etc...frustrating for sure.  It burns when she eats anything remotely spicy or brushes her teeth. 

Another side effect is mild tremors.  They are not outright apparent; however, if she tries to hold her hands still they slightly shake.  She is a bit frustrated as at first it was harder for her to draw. We are hoping that as they decrease the anti-rejection medications these will also lessen or go away.  

On a positive note, her leg pain went completely away! Yay!  

Living at the Ron Don:

It has been a blessing to have somewhere to go when we are so far away from home. It is very conducive to families who have kiddos with medical problems.

Families wanting prayer:

Over Easter a family who had been here for nearly a year as their son waited for a heart transplant got to go home. His heart turned around just enough for them to leave. His family and community are praying for his complete healing. Pray for baby Silas. 

Baby Kelsey has to take in all of her nutrition intravenously; pray for complete healing of her gut.

We are very fortunate to be here only 3 months; other families are here for years.  Please keep all families here in your prayers; God knows who they are. 

Prayers for Mariah specifically:

• hemogolbin and hematocrit to increase
• tongue to heal
• tremors to go away completely
• appetite to come back
• vit. D, Magnesium, phosphorus, and iron to be within normal limits
• no rejection so that the anti-rejection medications can be decreased safely to minimize side effects.

Thank you in advance!  Your prayers make such a difference!  We are eternally grateful. :-)

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

The Lowman Family  

We went out and saw Mariah and Keely to lift their spirits.  Mariah definitely perked up and was happy to get to hang out with her sister and her best friend.  Made it to Mass, went to the zoo (first time it wasn't raining and we got to see all the big cats).

Keep her in prayer.  Creatinine is down a bit, but so are her counts (white and red blood cells) so she may need a transfusion.  The kidney is supposed to signal the bone marrow to make these, so that is a function we were hoping would be working.  (I am not the medical professional, so please excuse my simplification of it).

Also, keep both of them in prayer.  It is a long lonely journey out there.  A long journey for a girl that has missed so much of her teenage years already.  And for a mom who has to sit and watch (in between clinic visits and keeping the docs on task).

Today Kale and the kids came; it was so good to see them.  Elaina and Abbie made Mariah laugh a lot. She kept up with them for the most part; although, had to take a chair into the kitchen to sit while they cooked.  I asked her how she felt and my little writer said jokingly, "bright, and spritely and sadly, not in love." and then giggled.

Please keep her in your prayers; we are hoping the labs on Monday are good!  

Tomorrow it will be so nice to all go to Mass together!

Sacred Heart of Jesus, we place all of our trust in You!

Blessings,

Kale, Keely, and kids

This morning Mariah woke up with severe leg pain.  Turns out the tacrolimus, an anti-rejection med can cause low magnesium, high glucose (diabetes), and a rare side effect is leg pain.  Her vit. D, hematocrit, and hemoglobin are also very low.  They increased her tacrolimus because the level dropped in her blood, but have also had to put her on vit. D, magnesium, phosphorus, and iron.  Monday, if her creatinine hasn't dropped, they will do a kidney biopsy to assess for rejection. Please pray that everything gets better and there are no signs of rejection.

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

Keely and Mariah

Our routine as of late is to get up early, grab a quick breakfast and head to the hospital to get labs.  The team changes her medications based on lab numbers.  Mariah's creatinine was dropping beautifully after her transplant until 3 days ago. It jumped a little, stayed steady for a day and then jumped again today. So, what does that mean?  Well, it can be a sign of many not-so-great things or just a blip. Mariah has been required to drink 2 and a half liters of water a day which she has been doing.  Today they increased that to 3 liters, in hopes that this kidney just needs a little bit more hydration.  So that is where we are going to start with this.  Hopefully by Monday her creatinine will come down again.  If by Monday it doesn't, we will need to have a kidney biopsy to see if there are any signs of rejection. Please keep those prayers coming.  We are not out of the woods yet. 

Mariah is still feeling kinda yucky.  The team reassured her that this is normal and told both of us that she just needs to rest.  They reminded me that most kids are still in the hospital until day 10.  So I need to relax too and tell the OT in me that it's not time to push getting up and walking and such yet.  I have been taking her to the hospital in a wheelchair.  She can walk in the room and short distances in the halls, but just the lab outing wipes her our for the rest of the day. 

Thank you for all of your prayers.  Sacred Heart of Jesus we place all of our trust in You!  St. Rita and St. Mariah Goretti, pray for us.

Keely and Mariah

This afternoon we were discharged from the hospital.  Mariah's creatine was up a bit so they ordered an ultrasound of her kidney.  All looked well so we were able to go.  Here is a little gift as a result of your prayers.  Just as our social worker walked in to try to arrange for us to go to a hotel, the phone rang and the Ronald McDonald house called with an opening.  We had anticipated it to be another week; however, the call came at the exact moment we were putting together those discharge plans.  We are now all settled in at the Ron Don and Mariah has taken all of her nightly medications; all seems to be well.  We will be going to the hospital several times a week for lab draw and medication adjustments.  So tomorrow we have labs at 8:30 am.  Our first night on our own after transplant!  Yes. :-)

Thank you again for all of your prayers.  May Jesus send His angels to watch over all of you. Good night.

Keely and Mariah

Sunday was a very good day for us.  She woke up smiling, joking around with the nurses, witty, and even laughed (every time clutching her big stuffed dog, snow princess, to help with the incision pain).  She also sneezed three times which caught her unaware.  Ouch. But other than that it was a very nice day.  We had visitors who painted with her while I did laundry.  She ate donuts and finished her hot fudge sundae that we had to put in the freezer the day before cause she couldn't quite finish it.  Sunday was great!

Monday; a different story.  Early Monday morning Mariah woke up itching terribly. So much so I was telling her to stop as I thought she might scratch unto bleeding.  Then she got really nauseous. Then her incision started hurting more than yesterday. Sigh, I thought we'd be doing better today.  It seems we have one good day and then one challenging day.  It seems to be a pattern.  Nursing gave her three different medications to take the itching away, deal with the nausea and pain. While making her feel better; those meds knocked her out for the morning.  She slept most of the morning and then perked up a bit this afternoon and evening. She walked the unit today again.  We are trying to transition off of her pain medications; however, it is taking a bit longer than expected.

On a positive note, they took out her last IV today so now everything is oral. We also started our "room in" where I am expected to give her all of her medications.  This means that I have to call the nurses in, request her meds, and then give them to her.  If I pass this test, then we are set to discharge tomorrow; however, I am not certain that she is ready for that as there are still some thing that are not quite figured out as of this evening. 

The Ronald McDonald house is full and has been for a week, so Mariah and I are planning on going to a hotel until something comes available.  The hospital will cover 5 days while we wait, which is very nice of them.  We are grateful.  As I understand it, we are close to the top of the waiting list at the Ron Don. 

Tonight, I gave her all of her evening medications.  It is a lot!!! I think her gut is not used to it as about 20 minutes afterwards she got nauseous again.  Poor kiddo.  Her anti-rejection medications are at high levels right now so it's the body.  They are toxic enough that caregivers are not supposed to handle them without gloves.  This is just another hurdle towards getting to live a good life; eventually, everything will even out and we can get back to our life and our routine.  

Apologies for the delay in posting sooner. Sending our Love,

Keely and Mariah

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

Today started off pretty good.  Dr.s came in for rounds and are happy with how she is progressing.  We decreased her pain medication, and the order was put in to have her Foley catheter removed. Our only hiccup in the very peaceful day was a severe bloody nose that took about a half hour to get under control and stop. After that, we did a complete change of everything, her catheter was removed and she's been up and moving on her own with her IV pole (yesterday it took 1-2 people to help her out of bed)! Today she is getting up and down by herself! Her kidney is doing great! 

Eden, one of my friend's daughters, stopped by and brought Mariah an amazing sundae with hot fudge and a whole box of donuts! We visited for about two hours which was so nice. After that, Mariah found a good book and it was sunny in Seattle today, so she curled up and basked in the Sunshine coming through the window with her book.  I actually saw her smile today and she even laughed, but told me to stop as it makes her incision hurt.  It was amazing to see my kiddo smiley again. :-) Now hopefully we will sleep tonight.

Thank you all for your prayers!

Love,

Keely and Mariah

 Kidney transplant is definitely a journey. Sleep barely happened last night.  Mariah's blood pressures were as high as they have ever been and the Tacrolimus (anti-rejection med) makes her feel yucky.  Last night we were chasing everything: blood pressure, pain, nausea, making sure her body could handle all of the new medications and not react, trips to the restroom with the pump loaded IV pole (which is pretty impressive in and of itself). We finally slept at about 2:30 am.

Tacro is a daily med and it is given at the exact same time twice a day.  Labs are drawn just as the medication wains and then it's right back at it.  I am looking forward to the time when we can decrease the strength of this  medication. But we need to remain in Seattle for three months....to adjust the meds and tweak them to her new kidney and body.  Two of the medications she gets are such that nurses have to double glove cause you can't let it touch your skin.  It is pretty intense.

Today Mariah had OT and PT, was up in the chair for a bit and was able to walk with a little assistance; however, she wiped out very quickly and easily.  Her urine cleared of blood for the first time (that is normal after surgery) and is clear!!  Kidney is working great! They are not fluid overloading her anymore, but are starting to pull off some of the fluid so she is less puffy.  We can see her ankle bones again. We are slowly backing off on the pain medication and the team has come up with a blood pressure strategy.  They think that as the fluid comes off her BP may come down some as well. We both fell asleep this afternoon as we were so tired.  Mariah is still sleeping.  

Pray that she starts feeling a little better tomorrow, that her BP comes down, and her pain decreases.  The team reassured her today that she is still considered to be moving quite quickly; however, she is starting to feel discouraged.  Mariah started like she was running a sprint, but she needs to slow down a bit and hang in there as this is really a marathon. 

Again, thank you for your prayers, they mean the world to us.  I am hoping that we sleep sooner tonight ;-)

Blessings,

Keely and Mariah

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

Mariah is feeling better this evening and we were moved out of the PICU.  With everything that happened this morning we were a little worried so they did an ultrasound of her kidney as they thought that the stent might have shifted....it didn't.  They did cultures on the central line, PD catheter, and IV's and are now thinking that the fever and vomiting and high BP are because she completely overdid it the first two days!  They have never seen someone eat 2 meals of solid food on the first and second days after transplant surgery, sit up in a chair for 5 hours on day 1 and 2 not to mention walk 1/2 way around the unit. This was highly unusual and so after running all of the tests to see what could be causing the episode this morning, the Surgeon feels that Mariah just did way too much way too fast and her body just rebelled today.

They prescribed a day of rest!  So that's what we did once they got everything back under control...she rested!

Thank you to the Holy Family Catholic School kids for cheering her on today!! It meant so much to her; especially, when she was feeling so rough. 

Sacred Heart of Jesus, we place all of our trust in You!

Mariah and Keely

The last few days have been so great!  We were just sailing along so smoothly; but this morning the waters got a bit rough.  Mariah needs a prayer boost this morning. If you have a moment to cover her in a quick prayer it would be so much appreciated. 

She started a new second anti-rejection med last night and it's really kicking her hard.  This morning she had the shakes, was cold, short of breath, she said her body felt really heavy and the pain over the incision was significant. Her output had been clearing up but there was a bout of blood this morning.  It did clear up, but not sure why it happened. She asked for more pain medication which seemed to help.  Her blood pressures have been high since last night sometimes hitting the 150/116 range. Then she got nauseous, zofran was given but 1/2 hour later she threw-up which was very painful with the incision, line, and IV's. 

Rounds are happening in an hour and a half so hopefully we'll get some answers. It could be that maybe this is just what that med does for now; not sure.

I blessed her with Holy Water and placed the relic of St. Maria Goretti on her chest. She appears to be resting now; however, she appeared that way last night, but told me this morning that she was in pain most of the night and it kept waking her up. Nursing just came in and she has a fever. Pray that our Dr.'s and nurses figure out what is going on with Mariah and that her meds are easier on her body. 

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

Keely and Mariah

Today started off great!  Mariah surprised the OT and PT and ambulated half way around the PICU and then came back and sat in her chair for about 4 hours before heading back to bed.  She is still eating solid foods and hasn't started her diuretic yet; however, now they are limiting her fluid intake a bit so the puffiness is slowly going down.  

Kale left today to go back home with the little guys and relieve Elaina, John, and Catherine. 

Tonight, I am beginning to think Mariah overdid it a bit the past two days as it seems to have caught up to her.  She is pretty sore everywhere and for a little while this afternoon was lying perfectly still. She asked for two kinds of pain medication... she is taking it easy the rest of the evening.  There was some buzz on the floor that Mariah maybe getting out of the PICU tomorrow; however, I think she needs to take it a bit more slowly. Anyway, we are still moving in the right direction.  The nurse said most kids don't even start solid food until day 2 or 3...but she ate  2 meals the first day!  It's hard for us to know what the correct rate of doing things is supposed to be.  I think that Mariah hasn't felt good for so long that maybe now that her body feels better she might have to relearn how to pace herself.

Mariah has a central line in her neck where they draw blood and give her most medications.  She also had two IV's in one arm and two in the other.  Today they took the two out of her right arm so that she is able to move and do things more easily.  She was very excited about that.  

Thank you for your continued prayers.  Good night from Seattle.

Love,

Keely and Mariah

Mariah holds the record for kidney transplant patient out of bed and sitting in a chair just 12 hours after surgery.  She is already eating solid foods and is ready to order her second meal today!  Tomorrow we mightl try walking. It's been a really good day for her.  Appetite is back and food tastes good to her again. She is pretty puffy, but only because they have her fluid loaded so that her new kidney will get a workout.  Tomorrow we'll start diuretics to pull the fluid off.  As I understand it, parents are usually very surprised at how thin their kids are with all the fluid gone and their real weight apparent. We will be crossing that bridge tomorrow. For tonight all three of us are looking forward to our first night of good sleep since the call.

Blessings,

Kale, Keely, and Mariah

Mariah is out of surgery and in the ICU.  The absolutely great news is that her kidney is already working and producing urine!  The surgery went well and she was out of the OR at close to 2 am. Initially she was in a lot of pain but now it is under control with pain medication.  She has received her first dose of anti-rejection medication.  Everything seems to be going well. She will be NPO for a day or two.  We went from about 15 people in her room post-op to now just one nurse.  Mariah requested harp music to help soothe her. So the three of us are settled.  

Thank you for all of your support both in donations and especially through prayer and messages!  It means the world to us that we have so many amazing people praying for her.  We will continue to update everyone as the next three months are going to be crucial to a full recovery and a return to normal life!  We are still in awe at how the Lord has blessed us and how all of the events have transpired. It was an Easter gift; a miracle.  He has us and we are so eternally grateful as we know how tremendously blessed we are!  Thank you, thank you!

Please continue to pray for our deceased donor and family.  We have absolutely no idea who this most generous soul and family is; all we do know is that this soul saved the lives of many people through the donation and gift of being an organ donor.  There are no words, just a free flow of tears at this point.  It reminds me of the parable of the grain of wheat, John 12:24-26. "Amen, amen, I say to you, unless a grain of wheat fall to the ground and dies, it remains just a single grain, but if it dies it produces mush fruit."  The Resurrection, the ultimate gift!  The gift of our donor...all on Easter!  No words...just tears of gratitude, relief, joy, and grief all rolled into one.  

Happy Easter!  Thank you Jesus for the gift of Yourself on Good Friday so that our Joy may be filled this Easter. What a blessed Easter Monday!!!

God Bless all of You!

Central line placed.  This is for lab draws and easy access for meds. They are now starting the kidney transplant portion of the operation.  

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

St. Rita and St. Maria Goretti intercede for Mariah this night and always, 

Amen

Surgery is now moved to 7:30-8 lasting until 2 am, if it is a go! 

Please pray for Mariah's strength. She hasn't had anything to eat since yesterday, she is exhausted and thirsty and we have a tough week ahead.

We arrived in Seattle a little after 5 pm yesterday and got checked into a room.  Once we got settled and after an x-ray, Mariah had to take a surgical shower (there will be two of those before surgery). While Kale and I were unpacking the car, her room flooded out of the bathroom :-).  Apparently, the base of the shower that holds back the water broke.  So the nurses were soaking up the water with towels.  B., our nurse for the evening, was AMAZING! No matter what happened, she was calm, cool, collected, and kind!  The hospital was hopping (maybe because it was Easter and we missed the bunny), but we couldn't get labs drawn until 11 pm. When they finally got here, the printer for the vial stickers went crazy and printed out about 10 feet worth of labels. Our nurse and the phlebotomists just rolled with it and found another machine. Then we battled the hospital's dialysis machine until 2 am. Finally, I insisted we use our dialysis machine that we brought from home as it was the one programmed especially for Mariah.  They finally agreed, but the other one had already over drained her to the point that her pain was so bad that she was shaking.  They had to give her Tylenol and oxycodone.   P. our PD nurse, who drove in especially for us and called 4 people in the middle of the night so Mariah could do pain free dialysis, and I had to fool our machine to bypass the drain and restart dialysis, which we finally accomplished by 3:50 am!  We really appreciate P.  He left at about 4:30 am after making sure we were taking care of.  Hats off to Kale as well. I had to call him at 2 am to bring all of our dialysis stuff to the hospital. This morning Mariah missed her chance to eat as we so exhausted after our night that we didn't wake up at 6 am to make sure she ate.  

She is now NPO until surgery 🥺.  Kale and I told her to watch movies until surgery to not think and pass the time... Surgery is scheduled for 6 pm.  They will take her back at about 5:30.  We won't know if the kidney from our deceased donor will be a go until the get her back in the operating room and look at the kidney!  Everything is up in the air right now. 

We met our surgeon last night. We asked him if he was Catholic after he seemed interested in her relic and allowed us to go to Mass on Easter Sunday before heading to Seattle.  Mariah, told him that she had prayed for that. God has His hand in all of this.  We are learning even more patience.  We are grateful for the staff here. 

As I am writing, they are here to start our surgery prep.  If it is a go, then surgery will take 6 hours. We anticipate it being completed by midnight.  Please pray for God's will in all of this.  Our hope is that the donor kidney is a go; please pray for the soul of our most generous donor!

God Bless and Happy Easter!

Kale, Keely, and Mariah Lowman

Got the call as we were getting ready for Mass this morning.  Now we are heading to Seattle for transplant, likely will happen tomorrow afternoon/evening.

Negotiated for enough time to go to Mass and praise God for this Easter Miracle.

Praise be Our Lord Jesus for walking with us through everything daily!  

Exceptionally, Mariah is back to three bags of fluid and has been doing 10 hours a night and her blood pressures have been normal.  Your prayers are working!  That is our only explanation for this improvement. :-)

We did receive news from Seattle regarding donation.  My brother has to do further testing.  If that comes back positive; we would be looking at the end of May, potentially June for transplant.  I have messaged them to see if we can be put back on the donor list as well, just in case it doesn't work. 

Side trials are many for our family and extended family; please continue to cover all of us with your most beautiful prayers. 

We have a relic of St Maria Goretti that has been put in a place of honor and given to us by a dear friend. St. Mariah Goretti, and St. Rita pray for us.

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

The Lowman Family

Andrew, my brother, who is willing to donate to Mariah finished all of his testing today in Seattle.  He will fly home tomorrow morning and head to work.  He said that they would contact him in seven days when all of the testing results are complete. Until then, we pray hard. :-)

Mariah will donate her hair to a good cause (pictured).  Getting ready for transplant...

Please pray that this is a go and everything lines up!  Thank you for all of your prayers and support thus far!  

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

The Lowman Family

This past week had many ups and downs.  Over the weekend Mariah's BP was trending up, we were in contact with SC many times.  Her rescue med was given but didn't do much so we eventually added the red bag on Sun. night.  It worked.  Her BP is back down.

My brother's renal function came back positively; he is now scheduled for a complete work-up in Seattle on Monday.  That said, SC wants to pause her on the list, which was not comforting to us as the donor workup is still not complete.  We called a special meeting this morning expressing our concern about the time of delay and the concern that if the donor doesn't work out, Mariah may miss opportunities for a kidney.  They guaranteed us that she'd only be on hold for 7-10 days regardless if the result was in; so we agreed to that.

Please cover my brother, Andrew, in prayer from Sunday-Tuesday; specifically. He will travel from out of state to Seattle.  Please pray for his safely and also that he is a match for Mariah.

We won't know any more for another 7-10 days.  

Also, thank you to a dear friend of ours who donated flights to Seattle and back for my brother. You have a heart of gold! 

We are very appreciative of all of your encouragement, support, and prayers!  Thank you.

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

The Lowman Family 

We went to Seattle for a training/PD team visit.  We had discussed moving Mariah to a split week of 14 and 12 hour dialysis days so she can have more of a life unhooked.  Unfortunately, we found out after only two days that she needs 14 hours every day, if not more.  We are behind the fluid game and are having to play catch-up.  What I  mean by that is that her fluid build up is such that her BP increased and has been bordering on giving her a rescue med. So 4 days after coming home her Dr. called and we had to come up with a new plan. We are going to do 14 hours a day for a week with all 2.5 percent dextrose solution (2nd strongest). And Mariah is now on a fluid restriction.  This is really hard as when you are in renal failure, your body is telling your brain you need more water so Mariah is always thirsty...always.  So she is trying very hard to limit her intake.  We are trying things like sucking on frozen fruit, ice chips,...etc.  Also, if by Friday we haven't seen a significant turn around, then her Dr. has suggested we start adding a 4 percent dextrose bag solutions to the mix.  The very hard fact for us is that this is a last resort solution that pulls a lot of fluid; it is also very concentrated and wears away at the peritoneal lining of your intestines.  Hence, we asked for a week of doing the fluid restrictions and 14 hours of dialysis in hopes that we won't have to start the "red" bag. We can now physically see Mariah getting puffy by the time we need to hook her up.  And she is very tired all of the time.  She just needs a kidney folks, she just needs a kidney.

My brother is doing the renal function test this week....idk when they will schedule the rest...depending on how this goes for him. Please, please pray that all of his tests are positive! It is going so very slow.  There is nothing we can do to speed this up.  I have advocated with both the PD team and the Transplant team.  And so we wait..and wait...and wait. 

Also, Mariah has decided to cut her beautiful hair...in all practicality short hair is easier to care for and in hopes that transplant is around the corner.  

Thank you for your continued prayers,

The Lowman family

This morning Mariah had a hard time waking up.  She slept in until 11:30 am, had a little bread and cheese for lunch, and then slept until 2:30 pm.  She said that she just felt heavy and awful but couldn't tell me more than that.  At around 1:30 pm I called Seattle as this level of fatigue is more than usual.  At a little after 2:30 pm it was suggested that we go to the ER to get labs right away to rule out anything blood wise. We arrived in Spokane around 4:40.  Labs were run and they weren't much different from last month so it was decided that Mariah needed to increase her dialysis to 14 hours instead of 12. Her remaining kidney is barely functioning at all.  She is completely living on dialysis now. 

We are home from the hospital, the machine's dialysis program has been increased, and she is hooked up.

Last year we started dialysis with two 6,000 ml bags of dialysis fluid.  Now we are up to four 6,000 ml bags and one 2,000 ml bag of fluid every night. 

Please pray that our donor is approved soon.  

Blessings,

The Lowman Family 

Thank you all  for thinking of me, your thoughts and prayers keep me going through this. Thank you all for your kindness!

Mariah

Good news: Mariah has been struggling with illness; however, the good news is that it is just an intestinal bug.

Bad news: All of the kids got it and so the past few days have been interesting around here going from one kid to another emptying buckets.  For them it's been about two days, for Mariah it has been 8 days and she is still not 100%.

The GREAT news:  Seattle called yesterday and our donor is a positive cross match!  Yay!!!! Now that our donor is a match, he has to complete a renal function test and then go to Seattle for two days for physicals, scans and evaluations to make sure he is healthy enough to tolerate living with one kidney.  If all that goes well, we will be heading to transplant!  We have no idea how long this will take.

Our prayer request: Pray very hard that this process goes quickly and that our very generous donor is healthy and that Mariah gets and stays healthy.

We continue to hope, wait, and pray! 

I can't express to you how absolutely grateful we are to this most generous donor and his family for being willing to go through this process for us; for Mariah.  He is the breadwinner for his family of five, works a very high stress job, and is still most generous with his time and life.  Please keep him in your daily prayers.

All for now....

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

Kale, Keely, Mariah, and family

Hi 

A quick update: Last week we sent Mariah's blood to Seattle and my brother also sent his to Seattle to test to see if they are compatible.  We have not heard back from Seattle, but have inquired. More waiting. Mariah is okay, but has been feeling really crummy this week. Nausea has been her constant companion as of late, sometimes throwing up after she tries to eat.

Honestly, I just don't know what else to say.  We are still active on the deceased donor list and have a potential live donor, but it feels desperate. Being blood type B+, there is more of a wait as only 9% of the population is that type. We have been on dialysis and waiting for a year now.  Discouraged is a good word.  Waiting and hoping while seeing your child slowly decline is hard. She has suffered so much; please continue to pray for her. She needs strength and a kidney!  This isn't a sprint; it's a marathon.

If you could send Mariah uplifting messages this week, we would very much appreciate it.

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

Thank you,

The Lowman Family

Good Evening,

Apologies for the lack of updates; we are just trying to stay sane and normal to the extent we can.  Mariah is doing ok.  Seems to be declining some, but she is still in good spirits.  The dialysis team continues to adjust her dialysis plan to keep her blood pressure down.  Mariah will be starting an appetite enhancer to help her eat more as getting good calories is a struggle.  Her team has told her that she is tasked with "eating to live", and that she needs to start looking at food as if it is medicine, whether appetizing or not. She finds much of the healthy food she can eat to be unappetizing. She has had to start a potassium binder along with her phosphorus binders with every meal as dialysis doesn't adequately filter either of them.  

Pray that our possible donor is a match.  He was cleared to send in his blood-work next week, so we will also be sending a blood sample from Mariah for them to test their compatibility.  A direct donor would be a God-send as the donated kidney lasts longer (20 years with live donor vs. 8-10 with deceased donor), can be planned out, and would be much easier on Mariah and us.

Our prayer request: Please pray extra hard for us in the next two weeks, that our very generous donor is a good match.  Pray for him, and his family (he is the breadwinner for his family and supports his wife and 5 children).  Please pray for Mariah, that she continues to have the strength to keep battling. It will be a year on dialysis the end of February.

Again, thank you for your generosity, both in your prayers and contributions. We have used some of the money to cover medical bills thus far.  Hopefully, very soon we will be at transplant. It has been a very long and rocky road, but we have been so blessed to have such a supportive family and community. 

God Bless you all,

The Lowman Family

St. Rita, Pray for us! 

Praise God, Mariah is now active!  

It has been a long road, we are finally here.  And now we wait.  

In other news, everything has settled down.  We finally got the issues with the machine figured out (programming issues.)  We use different concentrations each night depending on her blood pressure.  But when using the lower concentration, the machine was still set to pull more fluid like it was using the higher concentration.  So now I am trained on how to adjust that "UF" setting so it will pull less fluid if she if her BP is lower.  Thank the good Lord we finally have that resolved and we can all sleep at night now.

Thank you all for your continued prayers.  We have a few people going thru the steps to see if they can be direct donors for Mariah, so please keep that in your prayers.  That would be much better in terms of results and in terms of planning.  Otherwise we wait and will have to travel quickly to Seattle when one comes available.

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.