The days are flying by here as we approach “day 100.” We had a wonderful long weekend at home together. Lauryn had a swim meet that I was able to attend. I am so happy to have been there to see her swim.  It was too hot for Naomi to attend though.  So she stayed home and played with the other girls and her brothers. 

Today’s lab visit was quick and easy. Her counts are all fantastic. ANC 1420; hemoglobin 12.6 and platelets 246k. All her virus scans from last week were negative. It is really important to monitor that since her immune system is suppressed to help the transplanted cells thrive but the risk is that viruses can run unchecked if not checked for often. Her care plan is to test twice a week for those viruses. 

Naomi has had some really good days lately with regard to drinking water. If she continues to drink well for me at home, I can ask that we again decrease fluids given through the IV.  Her creatinine levels have been well within safe range since arriving home. Another good week and I will suggest we decrease the IV fluids. That is good bargaining power for me to get her to keep drinking. 

We return to the doctor’s office on Friday for more labs and her monthly prophylactic IV of pentamidine. In WI she had pentamidine through a nebulizer. Here it will be administered through her IV which will certainly be easier since the taste in the nebulizer was horrible and required her to suck on hard candy just to tolerate it. 

Her hair is filling in and her days are filled with playing, just as they should be. We have been working hard at finishing up the school year. I wanted to be done by the end of May. I will be content to be done by the end of June. It is all good because I actually have until the end of the calendar year if I really need it. We are so blessed to have had such amazing support from our school advisor. It helps that we homeschool through a Catholic school and our advisor helps me to focus on the day to day stuff and keep the big picture in focus. I can’t imagine having to have gone through the past 6 months without us having been homeschooling. 

I also want to say that despite my last post, I know how much support we have from so many of you and we are thankful for all of you. 

For anyone who feels like my husband and I may have not handled Naomi’s illness properly, or done something differently, I have a few things to say:

1) Naomi did not have cancer. Her bone marrow FAILED and she needed chemotherapy so that her brother’s transplanted cells would successfully keep her alive. There was NO CANCER in her body. It was an autoimmune disease. 

2) For all of who are well-meaning and send me facebook messages or texts about cancer, chemotherapy alternatives, monopolosies in healthcare, fraudulent doctors practices, etc. PLEASE STOP. Trust me, I have read it ALL. 

Anybody who knows me, knows that I am about as natural minded as they come. We tried all that first. Finally, trust me, Aplastic Anemia is a whole different animal. My child needed someone else’s blood every few days to survive.

Today was a doctor appointment. We were taken into a private room immediately upon arriving to minimize Naomi’s exposure in the waiting room.  While waiting in there, we did 16 lessons of language arts! 

Vitals and labs were completed. All vitals were within normal range and CBC results were awesome. Hemoglobin 11.8, platelets 259 and ANC 2500! That is her highest ANC count since transplant. 

Her metabolic panel and labs take a few days longer here than they did in Wisconsin. Her metabolic panel report from Monday was fantastic with liver and kidney results all at a safe level.  We are still doing IV 10 hours per day and are not decreasing that at all. 

I did a dressing change last night and noticed that her stitches are not holding the line into her skin. So at her appointment today I asked them remove the dressing and inspect it. They did check it out and photographed it, but didn’t seem concerned because they said that stitches getting loose is common and to continue keeping it well covered and secured. Naomi is very active here at home. So we will now be doing dresssing changes twice a week. I have also started requiring that she come to me for reinforcement if the dressing gets loose because I need to keep a very close eye on her line. Considering all the difficulty we had getting a line installed prior to transplant because of her many scars both internally and externally, it gives me quite a bit of stress knowing that this one is not perfect with loose stitiches. I kind of lost it last night and had a good cry. The long-term emotional stress is getting to me. So when we got back from her appointment today we had ice cream for lunch and took the day off to watch movies. It was a much-needed break for everyone. There is much more down-time to come as we head into a 4-day weekend with Daddy off and no appointments scheduled until Tuesday. This will be her first 4-day break since February. 

We celebrated a normal weekend at home! It was the first in over 3 months that we were home and she was well as she had been hospitalized for the 2 weekends prior to leaving for Wisconsin. It was actually the most normal weekend since early December 2016 when she became transfusion dependent. I didn’t feel the need to inspect her for bruises to monitor her need for transfusions or check her temperature at all. It was lovely!

That said, she spent a lot of time riding her bike. But it wasn’t until at the doctor’s office today that I saw 2 small bruises on her legs. Fortunately, they look like normal kid bruises and with platelets of 238, I have no need to worry.  So her platelets increased again since last Thursday. Her hemoglobin was also up, now at 11.7. Her ANC took a dip though but only to 920. I will take it. She also has been working with our dog to get him doing more fun things. She is trying to get him to catch the frisbee. Right now he will only fetch it. 

We continue to get adjusted at home. We are decluttering, cleaning, and organizing. We have a goal to return to a minimalist life this summer. While I am not working, I will enjoy the time at home by reclaiming what has gotten out of control over the past 6 months while we had frequent doctor appointments and went to the hospital for transfusions. We are also doing a lot of family time: games, desserts and movies – much needed relaxation time together. 

Home! Our flight yesterday was fairly uneventful. Everything was on-time and Sinéad slept most the flight only throwing a tantrum and kicking the seat in front of us (which was vacant) during takeoff and right about time to land when she didn’t want to stay in her seatbelt. The most difficult aspect of traveling was getting all of our stuff to the check-in counter in Wisconsin and then from the luggage center and into the van in Nevada. It is amazing how easy it has been to re-integrate with the family.  It almost feels like we never left. 

Naomi has spent her first day at home riding bike, playing with toys that she has missed and just hanging outside. I have spent the day organizing, dusting, and mostly hanging out in my pajamas.

Her first office appointment here was this afternoon and her platelets are 210, hemoglobin 10.7, and ANC of 1600! Her white blood cell count and ANC nearly doubled since Tuesday. Looks like coming home was a great idea! 

Words can’t describe how excited we are to be going home. We are leaving CHW with warm memories of all the nurses, doctors, care team support staff and recreation therapists that made our time here as comfortable as a hospital stay could be. Beyond the staff, the local community support made of families walking a similar difficult path welcomed us and offered support like I have never seen before. Wisconsin is made up of some truly amazing people. 

We are looking forward to leaving the sounds of sirens in the middle of the night (and all times of day, really) and going home where we are free to completely unwind while Naomi continues to recover. The amenities at RMH Eastern Wisconsin were like I have never experienced before. We are appreciative of the friendship of fellow guests and the administrative staff that was full of positive and encouraging individuals. It is a beautiful house and cared for by some amazing volunteers and staff. Naomi’s care at CHW would not have been possible without the provisions provided by RMH. I encourage anyone with a RMH or similar house near them to offer support and volunteer. Families like us who stay here sincerely appreciate it. 

Naomi’s last clinic appt was today and her labs continue to show good engraftment. Now we pack, clean out the room and figure out how to shuffle us and all our stuff onto a plane. But at the other end of the flight, my sons and husband will be waiting for us. It is truly a miracle that we will all be together again. All nine of us have made incredible sacrifices to make this work and it has been worth every bit. I will continue to update the blog once we return home. We report to Dr. Rashid in Las Vegas on Thursday. Aaron already picked up oral meds. Infusions will be delivered tomorrow for me to continue her IV treatments from home. One step at a time, we’re going home!

There is a lot of excitement as we prepare to go home but we had a little dose of sobering reality as well. While it is true that we will all be home together very soon, Naomi’s immunology testing showed that she is only at a 7. To put it into perspective how weak her immune system is, you should know that 400 is normal and anything under 200 is at risk for fungal infections, illnesses, viruses, etc. So while we are all very excited to be home  together, her recovery is far from over. I will continue to do her daily IV antifungals and fluids. She will continue to have blood tests donetwice  a week and at least one visit with the doctor each week. We just have the huge advantage of sleeping in our own beds and being with our family. 

They said today that it could be 6-9 months before she has any appreciable immune function and maybe even 12-18 months for some. All this to say that we will continue to protect her from illnesses which will mean a lot of family time is in our future. If anyone knows good locations within an hour or so of Las Vegas where we can escape that maybe there is shade and it is a bit cooler, please message me! I am sure they exist. Being outdoors is good for her. 

While Aaron was here this week, we spent a lot of time doing fun things. We went to the zoo on Wednesday and Friday. We saw a Brewers vs. Red Sox game on Thursday with awesome seats between 3rd base and home plate in the 5th row! Naomi also baked a cake and decorated it. It was a carrot cake and very good. We also took a few walks behind the RMH and played soccer in the field. 

Hemoglobin 11.1 (11.5 will be normal!)

Platelets 152!!!! Normal!!!

ANC 1100. (White blood cells up to 2.0 – normal is 4.0+)

Daddy should visit us more often. Every time he ges here Naomi has an increase in blood counts. During her appointment today, we talked with her team here about transitioning to home. Dr. Margolis texted Dr. Rashid in Las Vegas to start making that happen. He thinks he can send us home in 1-2 weeks. 

We need to have home infusions available for me to continue her antifungal and IV fluids there. She will continue to have labs twice a week in Las Vegas to be monitored and screened for viruses. She is most at risk for viral infections because of the chemo she received. Because she had a bone marrow transplant, she is on antirejection meds to help her new marrow grow. She is also on antivirals. So her immune system will not necessarily respond on its own and may need infusions if she does contract anything. 

Her team all agreed though that she is doing well enough to go home which will really be good for all of us to be together while we will still continue to maintain very careful exposure for her. It might be a challenge to find a new normal but we are all ready to try. 

Today we had a normalish day with Daddy here. After clinic we stopped at Trader Joes (Naomi’s second time since transplant in a store). Then Naomi went into Target for the first time in at least 5 months. I think December was her last time in a store. We hiked around in the Santuary Woods and found these stone structures for photos. But best of all was how calm the little ones were having both Mommy and Daddy. 

We have been keeping ourselves very busy playing outside and finding distractions indoors for ourselves. There was dance and movement therapy here on Sunday night which gave the girls a lot of fun. Bubbles are an indoor/outdoor activity  as Sinéad carries them around with her pretty much all the time. We have a stack of books that Naomi or I read endlessly to Caitríona and Sinéad. I backed off 100 EZ for a few days to read to Cait more so she can see more “fast reading” because she was painfully sounding out every word. That ended up being a good idea because she is doing better now when we do a lesson. 

Here are some photos from the weekend and Monday. 

Caitríona and Naomi were swinging with their eyes closed and holding hands. 

Sinéad loves to play Three Little Pigs in the playhouse outside. This includes me knocking on the door saying, “Little pig, little pig let me in.”  She says, “no way!”  Then I say, “then I will huff and puff and blow your house down!” She giggles hysterically. We can play that repeatedly with me trying to grab her through the windows or open the front door. She laughs hysterically every single time. If I stop playing, she will open the door or stick her head out the window and say “wolf, get little pig!”

Sinéad adores Naomi. Here they are swinging together. 

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We took a walk out back behind the RMH. We discovered “The Santuary Woods” which is a piece of nature property that was set aside over 100 years ago for a mental asylum that was located near here. The woods are beautiful, even if a little spooky. There are actually a lot of walking trails back there. So I think we will plan to make that a daily outing. It is a good change of scenery. 

I do not have many pictures of Cait. She is ALWAYS moving when we are outside. So most come out this way with a blurr. 

Dandelions in the field make for endless entertainment and relaxation. 

Even laundry can be fun. Sinéad makes a lot of it, too. She dumped an entire cup of tea on her cream jacket while resisting my attempts to let me hold it for her so it didn’t spill. 

This photo shows her cuteness which I am certain is the design and the way she is able to not only survive but to also get an endless supply of kisses and cuddles although she is a constant trouble-maker. Daily, I have to chase her mostly undressed  body through the lobby of RMH and bring her back to the room to practically force her to dress. Once she is clothed, that is nowhere near permanent as I can be heard repeatedly saying, “Sinéad, pull your shirt back down” or “keep your pants on!” Most people here just laugh. The woman in the corner office near our room looks up from her desk with a smile while she is on the phone and I wrestle a diapered-only 2 year old back to the room. Doors, even very heavy ones, are no obstacle for Sinéad. It has been nearly a week since I have gotten in trouble. So I am feeling a bit better. I am starting to look at it that I have been here 12 weeks and only on 5 days did I get “reminded of the rules.”  Those are decent statistics actually. 

Naomi and I had a late night cooking show date. Before the first episode ended, she was asleep on my shoulder. I stayed awake continuing to knit, enjoying the peace until after 2am because it was such a rare privilege. So at some point she switched so that she was resting her head on my lap. I was admiring her hair starting to come back. It is not as itchy to her anymore. It doesn’t itch me anymore for her to rest her head on me. When it was itchy to her she would rub her head on my shoulder to scratch it and I would laugh as it tickled. But the length is enough now that it feels soft. Naomi gets her head massaged fairly often by all of us. When she holds Sinéad, Sinéad will put both hands on Naomi’s head and rub. It is very cute. 

The girls really enjoyed dance therapy. We wish it was more often than once a month at RMH. I will definitely try to create that atmosphere in our room more. Music is always therapeutic for us. It was great to see Jenna again. We had not seen her since the news interview almost a month ago. 

Sam and Sinéad were dancing. They both love playing bubbles too. 

We are thankful for the recent sunny days. Even though it is cooler than we are used to, getting outside has been our sanity saver. Naomi returns to clinic Tuesday afternoon. She continues to feel good and be symptom-free. Her energy levels are really good and she is acting like a normal 9 year old girl. I am thankful for that. I look forward to her being able to return home to the rest of the family. I think it will help stabilize her moods even more. Here, she is the oldest. I can see how much she yearns to be with her older siblings again. 

Friday was clinic day. Naomi’s ANC is up to 930. Her platelets were 117 and hemoglobin 10.1. Everything continues to climb! I talked briefly to our Nurse Practitioner about starting to get a plan in place for us to go home.  I told her that when Aaron visits next time we would like to look at a calendar and put together a rough plan and that we would like to continue decreasing IV fluids and preparing for Naomi to wean to only the meds necessary to go home. She is going to arrange a meeting with the Dr for us.   

Unfortunately Naomi’s adenovirus high sensity scan came back positive again. It was the same positive result as last week with a low detection in the blood. We will just sit on those results for the weekend and keep watching for symptoms. Naomi continues to be symptom and fever free. Her increasing counts are also a good sign of no infection. 

After the heavy winds on Tuesday, Sinéad and Caitríona have had a rough week with what I think are allergies. A clear runny nose that, for Caitríona, has become a cough. I used the nose frieda with Sinéad and am pretty sure it helped her recover way more quickly. It would make sense to me that it is allergy related because Naomi did not get it – she is on zyrtec. 

More runny noses and coughs for Cait and Sinéad have meant isolation in our room. While I don’t think they are contagious, I still have to manage them as if they are contagious. We did finally get outside to the playset on Friday since the sun came out and the the weather was warmer. It was a beautiful day, even if a bit on the cool side, and helped to pick up our moods. I never imagined that keeping Sinéad and Caitríona here would cause so much more isolation for me and Naomi.  She and I are struggling most days to stay in good moods. We both have been here so long and miss home and the people there so much that it hurts. I stayed busy a few days this week putting together grade sheets and having meetings with each child at home to help them as needed for school work and go over things that needed to be graded/edited. 

I have been trying NOT to count the days. Most days I just ignore the calendar and try to forget what day it is. We just do what needs to be done next to get through the day and live in the moment. 

I am cautious not to take Naomi’s improving health for granted. While our time here is difficult with so much down time, her health is improving and that is ultimately why we came here. It is a good sign, I think, that she is starting to verbalize her desire to go home. It has provided us opportunity to remember to have her drink more throughout the day, get sleep to rest and continue to have climbing blood counts and to make good food choices. There is plenty of opportunity here for junk food choices as we always have desserts and treats in reach. The goal of going home is starting to feel closer. But each day feels like an eternity. Coloring, games, school work, meal times, tv time, puzzles, working out, etc are all things that help us fill the day but nothing beats home or can take away sting of missing the people there. 

The short good news is that Naomi’s labs were fantastic today! So we had good reason to celebrate. Her hemoglobin is up to 10.0. White blood cells 1.5 with ANC about 800. The best news is that her platelets hit triple digits at 109! Her kidneys are happyish but she knows needs to drink more…. it is a real challenge to drink enough some days. 

ADDED INFO: We just got a call from the clinic that the follow up adenovirus tests were all negative. So she is clear of the virus. More good news!

Now I will tell a bit of how it really is for us here. So if you want only good news, you can stop reading now. 🙂 For the short version of that, Naomi said, “it sucks and the rules are ridiculous.”

I dressed Sinéad from shoes to jacket before even picking her up out of bed. It was the smoothest we ever got out of the room for clinic. We even made it through breakfast with no issues. As soon as we got on the bridge though, the good morning ended as the wind ripped away our good moods and we were all wishing for the warm desert. 40 degrees in May is ridiculous.  I think it will be summer here before the temperature gets to 70…. if even then! 

Sinéad was quite a handful in clinic making me turn all shades of red and pink as her behavior tore apart the playroom and craft supplies at the clinic. Whatever she had, she didn’t want. She was impossible to please. She tore everything in sight out and I could only follow her cleaning up as she went. And she was loud. To anyone in MACC day hospital today, yes, that was Sinéad screaming. My sincere apologies. Maybe you could just tell the team to send us home?

Ok, I am being silly now but we really are starting to want to go home. Everyone at MACC and CHW has been simply fantastic. The rules at RMH are very difficult to obey some days. It is nearly impossible for me to have all the kids in my view at ALL times. It is also impossible to have a toddler wear shoes every time we are out of the room. I have been reprimanded a few times for both those issues. It is disheartening to know the rules and truly try to obey them but have to break them for my own sanity at that moment only to then have a manager “catch” me and reprimand me for it. When in the playroom with Sinéad and Cait, it is easier to risk getting in trouble than to deal with a definite tantrum from Sinéad when she must leave the playroom for Naomi to use the bathroom. So I let Naomi go to our room alone. She needs to drink a lot of water which requires filling her canteen often. So sometimes I let her fill her canteen alone too. 

I really don’t want to sound ungrateful. I can’t imagine life without access to a place like RMH. But yet the fact that I LIVE here without transportation and within these walls 24/7 with clinic only twice a week makes it impossible to follow the rules and I seem to get called on it fairly often. Many days it feels like my only choice is to hibernate in my room as often as possible. And to pray we can go home soon. Soonish? 

When we returned to RMH after clinic we arranged to have Culver’s delivered. That gave us our ice cream fix and was a way to celebrate Naomi’s increasing blood counts. She also celebrated by doing some gymnastics. Just handstands and backbends and stretches but I can tell her energy levels are high and she feels good which makes all the struggles of being here worth it. We can endure anything to see her health improve. 

Twice a week, Naomi’s dr runs virology scans to look for specific virus DNA in her blood. On Friday, adenovirus came back with a positive result but at a very low amount. It could be that she had it in her body before the transplant and was reactivated. She doesn’t have any virus symptoms but we had to stop by in the clinic today for a few labs to follow up on that. It was a quick stop into the clinic which was not really out of our way since we had to run to the hospital pharmacy to get prescriptions filled today too. 

Each day it seems to take a lot of activities to keep us busy. We play games in the toy room, and ping pong or video games in the game room. 

We finished this puzzle in one day (Saturday night to Sunday) and then found the missing piece Monday.  

Puzzles are much more of a challenge with Sinéad around. But we did manage to finish a second puzzle this weekend Sunday to Monday. 

We do a load of laundry pretty much every day. 

I was even bored enough to do my makeup one day. Actually, it was more that Sinéad let me. It has been a real struggle to get both myself and her dressed before she runs out of our room. Recently, she got out of the shower and ran right out of our bedroom door and went streaking naked down the hallway and to the kitchen where Naomi was making us tea! I heard laughter roaring down the hallway from Caitríona and Naomi who hauled a completely naked Sinéad back to our room. She was picked up by at least 2 video cameras that I am aware of and thought it was so much fun. 

The girls love the art room where they play with playdoh, paint, stamps and whatever else we might find in the open art bin. I am so thankful for this awesome art room. We spend hours each week in there. One day, Sinéad spent about an hour just snipping paper with scissors. It was peaceful! 

Tomorrow is a normal clinic day.  We are craving ice cream. So after clinic I think we might take a surprise field trip to find some.