+512

Wednesday was Naomi’s first appointment since having her catheter removed. We went into the waiting room, not being on isolation protocols anymore, and sat in the waiting area for the first time in years. I cannot remember the last time we were in that room. For at least the past 18-20 months, we have rang the doorbell and been let directly into an isolation room via the nurses door. After about 10 minutes in the waiting room, they did take us into isolation and skipped the common vitals area. I think they really love her and dote on her to do that. They also took us to our favorite of the 3 rooms we get assigned to most. There is a cold room and a hot room and a small room. We prefer the cold room. Then we sat there for about 30 minutes waiting for a lab tech to do Naomi’s first blood draw in approximately 18 months.

As you can see from the photos, Niamh was not as interested in the blood draw as Naomi. Naomi didn’t even flinch.

By the way…. All vitals were awesome. She gained over 2 lbs and gained an inch or two also. She is doing amazing. Her lab results were stellar too: platelets 220,000 and hemoglobin 13.8! Those are the two numbers we are watching most now. The platelets were what began to drop first after her first transplant. We will also watch her white blood cell trends. Her monocytes are quite active right now, likely because she is off immune-suppression and they are working to fight things.

For anyone following her progress and looking at our post-transplant protocol: she is currently taking Floradix, papaya enzymes, food based vit C, vitamin D3, desiccated liver, and probiotics. All of these were approved by her dr.

First Swim

Lost count of days and that is a good thing.

Life after transplant. LIFE.

Swimming. Acting like a normal 10 year old, almost 11! But strong and wise from challenging experiences. She lives each day doing the things she enjoys and she seems truly thankful for life. With blood draws only once a month, life feels normal for the first time in years. She is such an amazing person. I am so grateful for Naomi. She was excited to be able to swim at a birthday party this week. We have gone to friends’ for game night, birthday parties and she was allowed to go to Costco and Walmart shopping with Lauryn and me. It is the little things.

+477

Last night, on Independence Day, Naomi flushed her catheter for the last time. She is all ready for it to be taken out. Here she is waiting for her surgery team. She has an IV for the first time in 16 months.

+463

This week we celebrated her last day of Tacrolimus! That was Tuesday. Then, Naomi had her bi-weekly follow up yesterday. Her WBCs have returned to normal after being elevated for about 8 weeks. The dr was about to pull her line thinking maybe it was a problem. But now it is in normal range for the first time in months.

Her hemoglobin is finally holding steady and also in normal range. She is doing well with Floradix for iron and hibiscus and rose hip tea for vitamin c. Her platelets…. dropped again. They are still in normal range (180s) but having gone through this before, I would be lying if I said we are not worried. Her doctors are not worried though and have been very reassuring and positive. Her chimerism tests show she is 99%-100% producing Micayah’s blood. So they are optimistic that she is just regulating coming off meds and having her hemoglobin and WBCs stabilize finally.

I actually spoke with Dr. Margolis today. I am sure that I have mentioned before how much I respect and treasure him as a doctor but I will say it again. I texted him this morning for next step instructions. Within 5 minutes, he called me to provide guidance and optimism. So Naomi will be going in for labs on Monday. Those results will then go to Dr. Margolis in Wisconsin and hopefully she can stop Acyclovir and Pentamidine and get her line pulled. In NV she gets Pentamidine through the IV. If we were in another state, she might be able to get it through inhalation like she did in WI and that line would be gone already.

I feel selfish for asking. There are so many others in far worse situations and seriously life-threatening conditions. I have seen so many parents bury their loved children. I never asked to enter this hematology-oncology world. None of us ever do though. Please keep all these families in mind… and maybe keep Naomi in mind as we go for these labs Monday. She is a TOUGH girl but she is tender and fragile inside. I can see it. A mom knows these things. It is a tough exterior to protect what is most sensitive and buried deep inside. She has been through so much. May it finally be time for her to finally have her catheter line out?

+415

FINALLY! Naomi had some surprising news at a her dr appt today. She can now discontinue the nightly anti-fungal, Caspofungin. After 415 days of nightly IV medicine, she can finally stop.

Iron and hemoglobin levels have increased over the past month. We added powdered liver capsules, floradix and kale/spinach smoothies to her daily supplements/diet. Plus I make sure she gets iron-containing foods each day. It has really helped.

She will start to wean off Tacrolimus. Starting today, she will take only 2mg doses instead of 3mg doses. Along with this decrease, we hope to be able to start decreasing IV hydration as well.

On this schedule, she will be off oral meds by the end of June, as long as her labs stay stable. We celebrated with lunch out together!

+ 1 year and 20 days

It has been a while since I have given a full update. We have been waiting, waiting, waiting. Results from evaluations have been slow to come in. Some stuff has been very positive – good cardiac function, even some improvement; good bone scans and bone age/density tests. But her tcell count was still quite low requiring that Naomi continue to get Pentamidine monthly until that changes. Her chimerism results are not yet back from CHW. That will determine if she can begin to wean from tacrolimus and acyclovir. That will also tell us if she still needs nightly hydration and antifungal infusions. So things are in a holding pattern and it is looking like she will keep her central catheter for at least a few more months.

The hardest thing has been watching her hemoglobin and red blood cell counts trend downward over the past 3 months. She hit a low of 10.0 this week. After being up around 11.5-12 for so long, this is difficult to accept. Extensive tests are being done to check the cause of this secondary anemia. Her dr wants us increasing her iron containing foods because her iron was surprisingly low – so it could be just dietary. It could be that she is fighting illness after illness during what has been an awful sick season for our family this year. So her marrow is working hard to stay healthy. But they are also checking hormone levels, and even checking for other possible bone marrow disorders. It has certainly been hard to see Naomi dealing with this. She is doing surprisingly well emotionally with the process.

As a distraction, she continues to dance and bake and play in the spring sunshine. We pray that her immune system will stop getting hit with illness after illness and her hemoglobin/red blood cells recover soon.

+358

Today was a quick lab appt. Naomi’s hemoglobin and platelets were a bit lower this week. She was at 237 platelets; hemoglobin 10; ANC 3800. She has seemed very tired lately and lacking a bit of focus so the low hemoglobin wasn’t a huge surprise.

Over the next 2 weeks, she will have a series of tests: echocardiogram; bone age test; bone density test; and kidney filtration test. Since her creatinine and potassium have become an issue over the past 2 months, the kidney function test has become necessary. The dr here is also reaching out to Dr. Margolis to get a weaning schedule/plan for Naomi. We are all a little anxious to start coming off meds and seeing what her engraftment levels are. Those tests will be drawn next time we are in the office – in 2 weeks.

She was so excited to be able to put her hair into a ponytail!

Naomi was invited to skate at the Golden Knights practice arena. Her and Aaron had a great time. It was her first time on ice skates ever.

+339

I had a few moments this week where I felt like my schedule was too full and I needed to clear it. I felt like I was on the edge of panic mode. I felt like I had to stay home and kept a close eye on Naomi. I have asked her a million times this week if she feels ok and what her latest temp was (she usually checks it twice a day).

It hit me this morning when I was awake with my mind racing at 7am. A year ago today was when I tested her blood levels in my office because she woke with brusing like I had never seen before. A little after noon, I received stat results from the lab and rushed her to ER with zero platelets and by the end of the day her bleeding was worse than it had ever been. I never thought I could lose her as much as I did that day. I would not even let her out of the hospital bed to pee.

It ended up that there was a blood supply shortage in Nevada. We waited all day for blood and platelets to arrive from another state. After the transfusions were over, we went home where we would spend the weekend.

Monday morning, she was fevered and admitted at St. Rose with neutropenic fever. She remained hospitalized that week receiving multiple transfusions and antibiotics. Dr. David Margolis of Wisconsin worked with the doctors at Children’s Specialty Center of Nevada to prepare her for transplant. All of the doctors who cared for her that week hold a special place in my heart. They were all so compassionate, honest, quick to act and made her isolation time at St. Rose go smoothly.

When I think about how quickly everything moved at this time last year, I can clearly see the hand of God. In just a short week, we would leave for Wisconsin. A week after arriving in Wisconsin, she would begin chemotherapy to prepare for her transplant..

+323

Naomi had a follow up appointment with her doctor today. She was relieved when all her counts went back up. Most counts doubled! Platelets 336, ANC 6500 and hemoglobin 11.3. It was a week of prayers, good sleep and rest, all of which helped her recover. We have been running hydration IVs every other night to help her out too.

This flu/cold season is no joke. Stay healthy!

First Irish Dance Competition

Naomi had a wonderful weekend at her first Irish feis. She competed in the reel, light jig and single jig on both Saturday and Sunday. She came home with 3 first place medals and a third. Best of all, she really enjoyed it and wants to keep dancing.

Yesterday, we also recognized that 1/15 was her and Micayah’s 4th anniversary for the first transplant. It is so hard to process the emotions of all that means. Thankfulness for Micayah’s sacrifice; sadness for Naomi’s endurance and all the life changes she experienced. The only thing we can do is keep putting one foot in front of the other.

Naomi’s appointment on Tuesday brought some disappointment as her platelets, red blood cells and white blood cells all took a pretty big drop. It is hopefully (and according to the NP a common) viral suppression from the flu/illnesses she has been dealing with but there is always concern when things turn suddenly like they have this week. Aplastic Anemia seems to always be knocking on our door reminding us of its existence and that eradicating it from our lives is impossible. After having an almost 3 year stretch between transplants, I do not think we will ever feel completely at peace that all will be well. Seeing her in tears and full of panic at her blood count results today was a heartbreaking experience. I composed myself and tried to be positive and encouraging while feeling fear myself. I will have my cry at home later. Now I need to be strong. Her NP has been most attentive and loving today. I am so thankful for the angels that are in our lives through this.

+302

Merry Christmas and Happy New Year! May your year be healthy and full of cheer!

It was an interesting few weeks for us as the children one-by-one succumbed to the flu, and Aaron, too. Half of us ended up with the flu and the other half a nasty upper respiratory cold. Some were most unlucky and went from one illness to the other suffering from both.

We had looked forward to this week for months. Aaron took vacation for us to just stay home and we planned for a special week of lots of time, games and food, but food was the last thing from our minds for a lot of the week. Naomi became sick the Thursday before Christmas and it lingered throughout the following week, on and off. Her stomach is still recovering but, according to labs and dr reports yesterday, she is doing quite well. Her platelets are 500, ANC 9000 and hemoglobin 11.6. So yeah, her marrow is working very well. Her IgG levels were normal too at 822. We have been giving her nightly hydration IVs to keep her from being dehydrated as her appetite for food and drink has been slow to return. She has also required a dose of zofran almost daily over this week.

The weekend before Christmas we were able to do our holiday baking. The treats lasted longer this year than they have in previous years.

Sinéad, being the youngest, had the honor of putting the star on the tree. As the older kids turn into young adults, I love seeing them carrying on our family rituals with the younger children.

Niamh, Cait and Sinéad play restaurant all day long. I am full most of the time because of them talking about food constantly!

Lauryn is learning to play the guitar pretty quickly. It has been a good way for her to relax and she enjoys playing with and for the younger girls.

This is Sinéad passing 2018 to us. The year starts out way better than last year. 2017 was likely the worst year of our lives. Aaron and I will be happy to never see the likes of it again. It started with Naomi having falling blood counts and requiring transfusions and ended with her having the worst illnesses since transplant.

2018 has the hope of recovery – not just for Naomi, but the whole family, who has endured a year of trying circumstances. It was clear to me though, over the holiday week, while we were all not feeling well, how much stronger, more compassionate and united we have become this year. Each of us relies more on the rest, but also has a well of compassion and support for each other. Our family has definitely grown closer this past year and that is the good we can take from 2017.

We are so thankful to all the Aplastic Anemia organizations for information, guidance and support during the second transplant process. It was a nightmare we truly hoped to never need to endure but the guidance we received led to Naomi’s second transplant, literally and financially.

We appreciate the doctors, nurses, social workers, Ronald McDonald House staff in Wisconsin who sheltered, cared for Naomi though her time there, and helped get her back home.

Her home infusion nurses, insurance case workers and doctor here in Las Vegas have all made my life so much easier. I am so happy to have their support each week.

We are also thankful for all of you who have consistently prayed for her and followed her good days and bad days. I truly believe it is a miracle of God that she is with us today and your prayers made that happen. Over the year, I have heard about novenas, family rosaries dedicated in her honor and patron Saints called on for her protection, Masses said in her honor, and many, many positive thoughts and well wishes – all of which gave us encouragement along the way. Thank you.

Being the author of this blog, you will have to bare with me for a minute while I say a few things personally necessary. My life changed this year. Who I am, what matters most, and which relationships I value. Aaron continued to work and be home with most of the children and we learned how difficult it is to be a single parent. We definitely look forward to being home together each night. But for me, being the one with Naomi and leaving my life to go with her for treatment was like a huge pause button for me to start over when I returned. I have had a lot of reflecting to do in order to heal and move past last year. Watching my child literally fight for her life, and being separated from my other children and husband for months changed me immensely. If you knew me prior to Jan 2017, you may not know me now. My mama heart has been shattered and put back together so many times this year. The experiences I had with Naomi set off a ripple effect throughout my life. It is obvious to me in many small ways, but also in larger ways, like that I started a private midwifery practice and left the group I worked with and with this, I ended relationships that were not serving me well. I am a huge believer in strong families and will put nothing ahead of my family. It has changed how I parent and how I treat others, too. The experiences Naomi and I had in Wisconsin changed us both eternally.

Last night, on Day 301, after a very positive doctor appointment earlier in the day, Naomi was very huggable, lovable, and playful. Her and I napped on the sofa in the afternoon, made dinner together and then started a 2000 piece puzzle of a candy shop. It was such a symbolic event to start a new puzzle together. I am so thankful that she is doing so well and cannot wait to see what 2018 has for our family.

+290

Lauryn came down with the flu Wednesday night. Naomi got it Thursday. Since they share a room, it is no surprise. Naomi vomited only once, napped on and off all day, was able to eat dinner later at night (chicken and rice) and is totally normal today. I did give her one dose of zofran to help with nausea. But today, She is singing, showered and dressed in a lovely skirt and playing with her dolls.

Lauryn & Naomi 1, Flu 0

And that was without them ever having had a flu shot!

+287

Today was Naomi’s scheduled Pentamidine infusion. All her counts were good. We got results from her tcells tests done last month and the tcell count that was 87 last we knew has gone up to 244. She is approaching “normal range” which begins at 300. This prompted her doctor to remove isolation protocols and to allow Naomi to cease IV hydration. Starting this weekend, I will have 3 hydration bags at home to give her as needed and then I can simply get them replaced as needed from the home health agency.

It was a long appointment for us to get some school work done as we work fervently to complete this semester by Friday. Our family is very much looking forward to 2 weeks at home together and to move into 2018 leaving this year behind us. We wish you all a very Merry Christmas and hold you all in our prayers for a Happy New Year full of health and happiness.

Some photos of life in Las Vegas:

Christmas in the desert – my roses are in bloom.

As a National Honor Society student, Micayah had to choose a place to volunteer time and energy over this school year. He chose the Ronald McDonald House of Las Vegas. He shopped for kids and dropped off gifts for their Christmas party.

Lauryn and Naomi before their tea party.

Nightly readings around the Advent candles.

Happy Birthday, Malakye!

A reindeer named Aslan.

Shop with a Cop

The North Las Vegas Police Department and Nevada Childhood Cancer Foundation invited Naomi to participate in the 2017 Shop with a Cop Event. Naomi was paired with Officer Scott Vaughn of North Las Vegas and Metro. It was an exciting morning of pictures with Santa, breakfast with the police force and staff of the event, and Naomi and Scott (and I) walking through Target to buy whatever Naomi wanted.

Being selfless, Naomi first shopped for her siblings and then for herself. She choose shirts, slippers, a watch, some games and a puzzle. After checking out, she still had money to spend and was able to go back through the store and spend more. She choose snacks to share with her family. Again, she demonstrated that her family means everything to her and I cannot even put my feelings into words about that.

The entire event was heart-touching and made her smile and feel so special. After the year she has had, I am so thankful to Nevada Childhood Cancer Foundation and the North Las Vegas police force. I cannot say enough about Officer Vaughn and how much respect and compassion he demonstrated. He introduced us to the Chief, the Mayor, the former Mayor and some of the officers and swat team. It was definitely a day we will never forget.

Naomi’s balloon floated to the ceiling. He lifted her up to get it, but they couldn’t reach it alone. So someone brought over a ladder to rescue the balloon. Sinéad was very happy for that balloon once Naomi brought it home to her!

+272

“A watched pot will boil because I will sit here and prove it,” she said.

5 minutes later, she was in the living room watching Very Hungry Caterpillar with Sinéad and she never came back. I found the pot boiling myself.

She has had good days since her visit to the dr last week. We have not had to use the zofran prescription at all. We canceled her appointment scheduled for today since her labs were so good last week.

It has gotten so cold here. We hope to keep the oven going with cookies and baked goods to help us stay warm. 🙂

Stay warm!