Naomi’s labs yesterday came back really good. Her IgG went up to 748 and her creatinine and BUN were the best ever since transplant! So whatever the nausea and stomach issues were yesterday have passed. We do have a Zofran prescription at home now. So if it happens again, I can hydrate her here and give her a dose of Zofran. We will all be very happy if that was the last time we have an episode like that!

The day turned downhill for us when Naomi woke feeling awful. Nausea and lethargy were her symptoms. Within an hour of waking, she threw up, couldn’t eat a thing and couldn’t get her meds down. With lower-than-usual counts last week, I called the nurses to check in. We headed to the clinic for IV Zofran and super hydration. She picked up well. Her labs were much better than last week. Her platelets rose to 370; hemoglobin to 11.2; ANC is elevated at 9800, so she is definitely fighting something. We may need to go back tomorrow pending results of labs in the morning. They ran a bunch of tests. Her urine test results were good though. So we shall just wait and see. I am thankful tonight she seems like herself again. She may have just not drank enough fluids over the past few days. Or it could be an illness but she ate this afternoon. I enjoyed having Micayah with us at the clinic. It helped pass the time more quickly as Naomi and he took turns picking on each other. She loved trapping him in the crib…. tomorrow is Dec 1st. Counting down to Day 300 – New Year’s Day!

Last week, I was in Arizona with these Irish dancers who competed at the Western Regional Oireachtas.

Niamh placed 10th in the Traditional Set. She did a fantastic job for her first Oireachtas.

Micayah and Malakye both did amazing and showed huge improvement from last year, which was their first year in championship level dancing. So, this weekend, at their second year, they both qualified for Nationals (again) and Micayah qualified for Worlds.

Prior to leaving for Arizona, the boys and Niamh had intensive practices and pushed through them even while sick. For the past week, Naomi has been fighting the same cold/virus that the rest of our family had to deal with over the past 3 weeks. She had some very sleepy days, low grade fever of 99.8 and seems to generally be feeling ok; she is a bit more emotional, moody, and irritable, but that is to be expected while sick. These illnesses hit her harder and will take longer for her to recover as well. Most of us felt down and out for over a week. So I anticipate it may be longer for her.

Her IgG level went from 516 to 511 this week so she did not get IVIG. But her platelets dropped from 301 last week to 204 this week. Her hemoglobin dropped from 12.6 to 10.7. She looks pale and spends a lot of her time in PJs and under blankets. We pray for this illness to pass through her system without depleting her counts or suppressing her bone marrow any more than it already has.

Her doctor was out of the office and we saw the NP this week. After coming home, I decided that I would feel better going back next week for follow up labs. So I will schedule an appointment for Tuesday or Wednesday to get labs and see her Dr just keep an eye on her counts.

We are half way through a 4-day weekend to celebrate family time. I hope you all had a wonderful and blessed Thanksgiving. From our family to yours, Happy Thanksgiving!

Naomi’s appointment this past week was long but uneventful. The registering nurse never flipped the sign outside our door. So after an hour, I went to the nurses station to learn that they didn’t even know we were in there waiting.

I got some sewing done on Irish dance costumes and Naomi did some schoolwork. So it wasn’t a huge waste of time. But when she began turning medical gloves into water balloons I knew it was time to get things moving!

Her labs continue to be good and mostly in normal range. Her WBCs are at the lowest end of normal while a component of WBCs, monocytes, are as high as normal can get. This is likely on account of a cold that the kids in the family are passing around. (More on that later.) Her IgG continues to hover just above 500, at 515 last appt and 516 this appt, meaning she has avoided IVIG. Her ANC is usually between 2300 and 3500. Her platelets are over 300,000 and her hemoglobin is well over 12.

Her kidneys, creatinine, and BUN continue to be monitored closely as we wean her off IV hydration. She now gets fluids 3 nights per week and should be drinking 4/5 canteens a day. This is a challenge for her. She is doing fairly well with it though. She created a drinking chart to color in a box for each canteen. Her goal is 70 canteens between appts and so she made 70 squares to be colored before we go back to the dr again. I am so proud of her!

About 10 days ago, the little girls started passing a cold around. I, as mom, have had it for 6 days now. Lauryn, also a caretaker for the littles around here, has had it for 5 days. But Naomi avoided it until yesterday, day 248, when she had a sore throat. Now, on day 249, she has a small cough and is sneezing but the sore throat is gone. It always amazes me how she actually kicks these things faster than me.

Our days have been filled with warm tea (it got cool fast!), Irish dance practices and preparation for regional championships where Niamh, Micayah and Malakye are competing, and a lot of family time. As we think back to last year at this time, her counts were dropping and we were planning for our family vacation over Thanksgiving. This year will look very different for us over the holiday, but we are certainly thankful to all be together.

The home medical service called today to schedule tomorrow’s delivery. They told me that her Dr. lowered IV hydration to 3 bags per week. That is a great way to start the week!

Here are some photos from our past month.

Naomi continues to do very well.  She had no hematology appointment this week.  The home delivery pharmacist who prepares her antifungals and IV fluids calls me each Monday morning.  This week, she asked about the convenience/comfort of the CADD pump for Naomi to sleep with each night.  I told her, honestly, that the pump is loud and Naomi is annoyed by it.  So, the pharmacist provided us with some gravity-based lines to avoid the pump sound overnight.  Naomi used it for the first time last night.  It was awesome for her.  She said that she thinks it was the best night of sleep she has ever had.  It primes much more quickly for me, too.  I am also happy to not need a 9V battery every other day to run the pump.  The pharmacist also inquired about Naomi’s creatinine levels and then suggested that I ask Dr if we can decrease to an IV bag every other night at our next appointment.  It might be easier to do that than wean her based on fewer hours each night, and then we can decrease by the nights of week she needs the fluids.

Naomi and Lauryn baked a cake for Day +225 in honor of Micayah.

This will be a brief update. Not much new, which is good. Tuesday was a quick lab appointment. Naomi’s ANC was 3200, platelets 277 and hemoglobin 12.5. She lost another lb which is decent since she gained so much during transplant and while on fluids.

She still gets IV 8-9 hours a day and antifungal IV each night. Her meds have not changed in months as she is still on Acyclovir, Tacrolimus and magnesium.

Her engraftment results came back from early September. The CD3 line was too young to be measured last time but is 98% donor now. The CD33 line is 100% Micayah’s. We believe the CD33 line was too much hers after the first transplant and caused the need for a second transplant. So we are optimistic seeing the CD33 at 100% donor!

Her IgG levels have stayed well above 500 allowing to not need an IVIG infusion. Those make her feel pretty bad so that is good, too.

Naomi continues to be active in choir at church, and some homeschool activities and Irish dance. As we head into cold/flu season, we will be very diligent with essential oils being diffused, the house being cleaned and her avoiding all illnesses wherever possible. There may become a point where she needs to pull back on activities but for now we are happy she can be involved. She also has enjoyed quite a bit if baking at home. Our new kitchen is amazing to prepare desserts and meals.

Thank you all for the prayers and good wishes. Little by little we are seeing her become more cheerful, less stressed and living a normal life without resisting or avoiding the necessary meds and infusions. She counts down the days to day 365 when she can hopefully start planning to get the catheter removed. That seems to be her goal and light at the end of the tunnel right now. And rightfully so.

Today was the first Tuesday we have had off in months. It was fitting that we were scheduled to cook the meal for our local Ronald McDonald House. Lauryn, Naomi and I, as well as some friends, attended together. We look forward to being there again soon. This location said they accept volunteers ages 10 and up.

I am having a very difficult time putting into words the experience. In light of the Route 91 Music festival tragedy, the people of Las Vegas has pulled together amazingly. The Ronald McDonald House was stuffed to overflowing, literally, by donations for families affected by the situation, emergency responders and hospital staff.

When we arrived, the kitchen was unavailable as a crew was making bagged lunches to deliver to emergency response, hospitals and urgent care centers which are all overfull right now.

Personally, being there felt a little like home. Although we had never been at this house before, we were able to easily find our way in the kitchen and dining room. It was an honor to be able to serve them and give our time and talents. Everyone at the house, staff and visitors were incredibly kind and thankful. We enjoyed the opportunity to sit down and share a meal with them.

Naomi had never browned so much beef in her life.

The girls prepared sloppy joes, vegetable stew, cornbread and apple crisp. They also cleaned up after themselves and set up the food buffet-style. We left a lot of leftovers for tomorrow.

The Las Vegas RMH is beautiful. No visit is complete without a photo with the man himself. 🙂

4 years ago this week, Naomi was diagnosed and a whole new way of life would begin our family. Watching blood counts, sanitizing and washing with antibacterial soap constantly, being afraid of what could harm her because of her weak immune system. We had a new calendar of sorts introduced to our family – before AA, after AA, before transplant, after transplant. It all still seems so surreal. Like it is a story I am seeing happen, but it isn’t because I definitely feel the pain of all we have experienced. It is so difficult to watch someone go through this, to lose dreams, struggle in the things we normally take for granted. I am learning to take NOTHING for granted and count the small but significant blessings along the way.

Last night, Naomi pulled out the 1000 vintage candy puzzle we did in Wisconsin. She begged me to do it with her. So I got a cup of tea and joined her. It was therapeutic- and yes, we finished the whole 1000 piece puzzle in one setting! – but Niamh joined us. Somehow we got on the topic of dr appts and Naomi suggested sarcastically Niamh “go to her appt for her.” Niamh perked up and said she would love to go with Naomi. I told her that since this week is Pentamidine it would be good for Niamh to join Naomi and play a game at that time. Niamh was so excited she ran to tell her Dad that Mom said she could go along this week. I then whispered to Naomi, “Niamh ADORES and you. She WOULD go to your appt FOR you if she could.” Naomi nodded and I think she realized for a second how much Niamh loves her. They are both so special.

Naomi had an appt on Monday this week since her dr started hospital rounds on Tuesday. It through us off a bit. We also had a very busy week around the house with the oven breaking, Aaron having long meetings and activities, school work, etc. If it sounds like “normal” life, well, it pretty much is!

At Naomi’s visit, we had prepared for a possible IVIG infusion since her IgG fell to 515 last week and 500 is her lowest acceptable limit. She had been fighting a cold and had a pretty nasty cough last week. But this week, her IgG went up on its own again for the second consecutive cold/illness. So at 595, she avoided another IVIg infusion. We are so very thankful!

She will have labs done the week of 9/20 and then have her monthly Pentamidine (ALREADY?!?) on 9/27. Then, beginning October, we will go to appointments only every other week! We are so very excited. Her cast comes off 9/20 also. With appointments every 2 weeks, she will have Pentamidine at every other visit. We figured that she will have only 13 visits remaining until her 1 year anniversary.

She had A LOT of labs done this week that will be sent to Wisconsin for processing. They are checking her engraftment levels and such. We are anxious to get those results.

As the week has progressed, her cough is completely gone and she is acting like a very normal child – resisting bedtimes and rolling her eyes when I ask how much water she has been drinking. Still on IV fluids 10 hours per day, she said today that she is going to commit to drinking more fluids to get off the bag. I laughed. I have heard that before.

Her labs this week were absolutely amazing. Platelets 325, Hemoglobin 12.5, ANC 6700. Not only was she fighting the cold but her marrow was like super marrow amping up those WBCs and kicking the illness to the curb. Amazing!

We are due for a photo update if I can get one. Those curls are coming back fast now. 🙂

Naomi’s appt Wednesday was quick and painless. She had labs drawn to check her CBC and CMP. Her IgG dropped a little this week. I thought she had been more moody, tired and seemed to be fighting something. It is hard to be sure sometimes because she hides it well and her resounding strength makes it that only I can tell because Moms just know!

Her ANC was 1700, Hemoglobin 12 and platelets 280. Her doctor here will be contacting Dr. M in Wisconsin to see if spacing appts out every other week is acceptable. That would be LOVELY but at the same time there is security in seeing them every week. I can feel some anxious anticipation in the thought of going 14 days between doctor appts. Eek.

Naomi is doing well with school work; she practices Irish dance at home between classes to perfect new steps by the next class; a weak immune system is definitely slowing her down from what she would rather be doing. I am thankful that where we live there is outdoor space for her to run and explore. It has definitely been a good move for the children. In 2 weeks, she will have her cast removed. We look forward to that day.

Yesterday was a weekly clinic day and monthly Pentamidine infusion. Now the weeks are flying. It feels like she just had Pentamidine but it was due again. At the clinic, we had a lazy day and watched old reruns while the infusion ran. We skipped school although we brought it with us. We were both feeling exhausted and needed the break.

Naomi’s labs were good. ANC 3300; platelets 271; hemoglobin 12.2. Depending on the results of the Creatinine, she may start weaning off IV fluids again. I have left that all up to her. I do not even mention water to Naomi anymore. If she wants to get off the IV, she knows she needs to drink. I refuse to nag about that.

After her hematology appointment, we went to the bone surgeon and had her cast removed and arm recasted with a short cast. We do not need to go back for 3 weeks now and then the cast will probably be removed for good. They said she is healing very well.

Naomi is enjoying Irish dancing very much. She practices a lot. Her optimism has been better this past week than it had been in months. She feels like she has a life again.

We continue to settle into the new house and enjoy being closer to activities and friends. I like only needing to fill the van once per week, too!

Niamh had her first Communion on Sunday. I used it as an opportunity to get a photo of all the kids.

Naomi is officially a 5th grader!

I handed out syllabi and checklists on Monday and the kids anxiously jumped into lessons. This year we have six homeschoolers: Micayah 11th, Malakye 9th, Lauryn 8th with some AP 9th, Naomi 5th, Niamh 2nd and Caitríona Kindergarten. That means Sinéad is the resident foodie. She loves doing puzzles and coloring and asking for more food. She does so by saying, “I am wanting dinner.” She eats “dinner” 5-6 times a day!

I have already graded science papers, taught for 2 days and am amazed at how smoothly things are going so far. The children are all happy with their schedules and activity plans. We are rather busy this year with Irish dance for 5 kids, Little Flowers for 4 girls, Little Women Charm School for 2 girls and choir/schola/altar serving for 4.

Naomi has really struggled with optimism. Since coming home, she has not been able to find her niche. Being a gymnast at heart, but too weak to do that, she is needing to find her way in this world apart from the one activity that was her escape and is her true love. I saw a ray of hope today. She is excited to begin Irish dance. Best of all, she is finding satisfaction in her school work and is excited each day to accomplish what she has to do. It is nice to see her moving through her school days with optimism and a good attitude. It was heartbreaking to see her struggle for so many months.

During her weekly hematology appointment today, the doctor said she will no longer be running all the viral tests each week. She will do them every other week and if Naomi has cold/virus symptoms. The doctor also cleared Naomi to begin Irish dance class tonight since it is mostly her feet doing the moving and it will actually help her build bone density.

Her labs today were fantastic. ANC 2500; platelets 328; hemoglobin 12.8. Her white blood cell count showed a higher than average number because her bone is healing. Tomorrow will be xrays to see how it is looking. Her vitamin D level was right on the line at 29. So we will supplement for a few months. The hot summers here are like winter for us because we do not get outside much.

Naomi and Caitriona both really enjoyed dance class tonight.

Naomi got a purple cast on yesterday. It goes above the elbow because she had some instability of the bone when she rotated her elbow. Next week, she will go back for another x-ray. As long as things heal well, she can get a short cast in 2 weeks. She is already planning which color that one will be. Now, we have a weekly appt for her broken bone with one doctor and another appt with her hematologist.

Naomi is obviously very resilient. We went from this at the hospital Monday night:

To this a few hours later while having the most amazing chocolate cake recipe (minus the eggs because I forgot to add them while juggling the news of her cartwheel-caused injury and phone calls/texts to her doctors).

Lauryn finished the cake while we were at ER.

So, Monday we were at ER. Tuesday at the pediatric orthopedic surgeon. Wednesday at hematologist. We are also in the middle of moving about 40 minutes from our old house, to the northwest corner, near the mountains and farm area of Vegas. We love it. The new area – NOT the move! We will be very happy when the move is over. But I digress.

Her blood work today was fantastic. ANC 5000; hemoglobin 12.3; platelets 277. Her dr was very happy with her energy, sense of humor and labs. The fact that her counts are so high is a good indication that her bone marrow is making cells to repair that broken bone. It was her highest ANC since transplant. When anyone asks, “what did you do to your arm?” Naomi replies, “something really stupid!” She is quite a sight with a mask and a cast.

With school starting locally, although we homeschool, activities are starting, too. So, I inquired about what precautions to take for Naomi’s well-being and how involved she can be in activities. The dr said that her immune system is doing well fighting things and we should just continue to sanitize, wear a mask and be cautious around those with illnesses. I will likely carry masks for my other kids. But seriously, we will have lots of hand sanitizer and be sharing liberally. Bath and Body, here I come!

We are looking into whether or not Dr. Margolis wants to keep her IgG thresh-hold higher. We currently infuse IVIG when she reaches 500 or below. To keep her from getting sick frequently, we could increase the thresh-hold to a higher level. Our dr was going to look into that. Since we have so many children involved in so many activities, Naomi is likely to have immune tests frequently, which is not necessarily a bad thing. But we need to see how long her recoveries take. The good news is that she is recovering and her immune system is working. That girl!

I was told that a box from CHW arrived at the Dr’s office with instructions for tests to be done and sent to CHW and Dr. Margolis at the end of the month. It is likely engraftment analysis and such. I think they will he scheduled for 8/30 when she gets Pentamidine next. We did extra tests today to check vit D and bone density minerals….. you know because if the broken arm.

Happy Birthday, Naomi!  The day didn’t end up as we thought.  We had the most amazing chocolate cake recipe waiting for this day and were anxious to eat dinner and then play games and have fun together all night.  As I was baking her birthday cake, Naomi admitted she had done a cartwheel and thought she heard her wrist crack.  She kept that detail from me all day because she has been forbidden to do cartwheels for months on account of the broviac port in her chest.  She said that she thought a one-handed cartwheel would be fine because she was avoiding the right arm where her broviac insertion is located.  So here we are spending her birthday at the ER.  She has a buckle fracture and is in a cast for 6-8 weeks.  Tomorrow I will have to call and schedule a follow up with an orthopedic specialist.  She definitely keeps life interesting….. and busy.