We heard back from City of Hope today with the results for Naomi’s engraftment test that was drawn last Monday. We are thrilled to share that her results were 97.8%! That means that almost 98% of her cells are from her donor’s marrow. Almost at 100%!

Since we did not have to report to the clinic today, we celebrated our day off by hiking at Red Rock.  Naomi was rock climbing and fearless just like the other children.  She and I were both winded at the start of our climb up the hill.  It had been quite a while since we were up there!  But before long, we were climbing pretty well. I had Caitriona in the backpack and chased the other kids as they climbed…. Even though I told them before we got there that we would not climb and only hike. It is kind of impossible to go to Red Rock and not climb. We really enjoyed our day.

Caitriona and I took a selfie…

Miss Niamhy is getting so big.  She is very voluminous in everything she does.  She was thrilled to be on the trails!

There was a ledge up high that could only be accessed by crawling under a break in the rocks.  Micayah, Malakye, Lauryn and Naomi all climbed up there for me.  Naomi got down before I could snap a photo.

Naomi climbing up the rocks that lead to the ledge.

Our view from the mountainside.

Naomi, taking a break as we climb up….

This rock was kind of floating up there with air underneath.  🙂

Micayah and Naomi are waaaaay up there, if you look closely.

The meds have been reduced from the cooler to the lunch box. The cooler is filled with snacks for a hike. Our day will be filled with a fun hike instead of a 12 hour day traveling to CA. Yay!

An awesome appt today on Day +96. Her appts was so great that we do not need to return for TWO weeks! This will be our longest stretch between doctor appointments since Sept 18th when this all began. Now, after 7 months, we can finally experience two weeks of “normal!”

Wbc 3400
Anc 2400
Hg 8.8
Platelets 180

Her liver and kidneys were happy, so we are all happy! We will know the results of her engraftment analysis by the end of the week. She was at 96% around Day +30; 93% around Day +60 and now we wait for Day +100 results.

Friday will be Day +100. We are so thankful for how well she continues to do! This week we have family photos scheduled ad some surprises for Naomi. 🙂

We were informed today that Naomi’s application for a wish was approved and she is eligible for a wish. Now we have to wait for the interview when she gets to reveal her wish!

At 5:30am on Monday, we headed to COH for Naomi’s weekly appointments.  We arrived easily with no traffic or delays and were even able to stop for a breakfast smoothie before checking in at the hospital.  Labs and vitals went well; no fever, blood pressure normal and the best news of all, she went up 1.5 lbs in one week!

The next appointment was in the imaging department for her Ultrasound to check on her kidneys.  The emotions while taking off her top and putting her into a hospital gown caught me off-guard.  The last time she had an ultrasound was when she was admitted on October 13, 2013 and would have surgery just a few days later, on October 17th.  She seemed to control her emotions well, lying on the bed holding her St. Nicholas pendant and rubbing her fingers over it, as though soothing herself.  She thought ahead enough to wear her essential oil diffusing necklace and asked me to refill it with peppermint for her.  My stomach was in knots.  While watching the ultrasound screen, I did not see anything unusual and assured myself that the nephrologist was not concerned but just wanted some pictures for verification.  I was thrilled to get out of there though.  The hospital bed.  The ultrasound screen.  The technician with a straight face not telling me what she is seeing.  Her leaving the room to ask the dr if he wanted more shots, twice.  Him wanting more shots, once.  It really has been a growth in patience for me these past few months!

We had a few hours until Naomi’s appointment with the doctor.  So, we went to grab some lunch.  Throughout the morning, Caitriona had told me, “pee bad!” 4 times and I had hauled her to the bathroom that many times.  At some point she learned that if she says “bad” after “pee” that I will take her right away.  Remember, I have major public bathroom phobia, and this was really grating on my nerves today.

When we sat down to eat, Cait was dancing all around and would not settle to eat.  I sat her on the chair and she jumped off of it.  We repeated this a few times. She started pouting, “pee bad! pee bad!”  I did not take her to the bathroom though.  I was sure she was exaggerating and did not need to “pee bad” since she had gone 4 times in the past 2 hours.  So, she one-upped me and started to say, “pee bad! POOP!  pee bad! POOP!”  Her cries were loud enough to get the attention of the woman at the next table who looked over her shoulder at us.  Mortified, I gathered Cait in my arms, and like a loving mother, sat her on my leg and told her to open up for a bite.  I also whispered in her ear to “hush and not say pee and poop again.”  As she stopped crying, I felt a warm sensation run down my legs.  I plopped her to her feet, looked at my pants and was stunned to find that it looked like I had peed bad.  Thank God there was no poop!

After running back to the car to clean up Cait and get into my extra clothes, it was time to rush to our appointment.  It would happen that we were called into Naomi’s appointment about 30 minutes late.  I spent many of those 30 minutes taking Cait off the sofa where she insisted on walking and jumping.  Fortunately, Naomi’s ultrasound results were perfect.  Her hemoglobin and platelets remained stable from last week, but her WBCs and ANC plummeted again.  She is back at 900 ANC and 1700 WBC.  It continues to be a struggle to keep her meds in the therapeutic range.  Cyclosporine was at 143 at the last appointment and at 241 the appointment before that.  The levels keep going up and down.  It could be due to not drinking enough, or maybe her weight gain.  Perhaps the warm weather here in Vegas last week means we need to increase her fluid intake yet again.  The delicate balance of all this is slightly overwhelming at best and completely maddening in reality.  I feel like a pusher making Naomi drink as much as she does.  I was happy to start our drive home and make it there in semi-silence as the girls napped.  We made it home to Vegas mostly in the daylight and were able to enjoy dinner as a family.

That was all on Day +89.

Today, we awoke to Day +90!  On one hand, I cannot believe that we are here and STILL dealing with such fluctuating numbers.  I had this idealist vision that around day +30 her WBCs would engraft and begin to double and then double again and that it would all be better.  But this is certainly teaching me to find the good and be thankful for it!  So, I force myself to look at the other side of all this – I AM thankful that she has remained healthy with no readmissions, has good energy to the point of NOT napping even when I insist she lie down at quiet time; she spends her days being a normal child: playing, running, learning, eating, laughing… We feel incredibly blessed to have her health improving and look forward to her continued increased health.  We had hoped that she would be able to return to gymnastics and have a coming home party within the next few weeks, but with such fluctuating counts, we have to put those plans on hold.  We are now looking at a celebration in the fall when things cool down here to celebrate one year since her initial admission and diagnosis.  Your continued support means a lot to us.  I cannot say thank you enough!

Aaron returned to work last week, leaving me to head our homeschool alone for the first time in months. It was an unexpectedly normal week. There were some difficult moments but the week went, overall, extremely well. I even forgot to flush Naomi’s line one night and went up to do it while she was asleep. Another night, I forgot to flush it and let it go until morning! I was completely exhausted at the end of the week.

This past week was the end of her antifungals meds. Goodbye pink fluconazole! That was a tablet that always started breaking up in her mouth. She hated it and is so glad for it to be gone. We had doughnuts this morning to celebrate her having had her last pill of fluconazole last night. My homemade powdered sugar coated doughnuts were a huge hit. Not a great healthy start to being antifungals med free, but our dirt is stellar in all other ways so we enjoyed every bite!

Naomi has appts tomorrow at COH. I am not sure if we will leave tonight or early in the morning. The traffic is too heavy to start out for there now. And with Call the Midwife on PBS tonight, I think I will just wake at 5am to make the drive in the morning.

Our days have been filled with school, playing outside, walks and riding bikes, and evening family time.

Monday morning, bright and early, we headed to COH for our weekly trip. Arriving on time with limited traffic, we checked-in and went for labs. Then, we grabbed a quick snack in the lobby and ran back upstairs to meet the drs.

First, we were taken into a meeting room and a new physician entered the room. Dr. Yadin, the nephrologist (kidney dr) proceeded to tell me that she reviewed Naomi’s reports and has no concerns whatsoever about her kidney function. She explained that high potassium can be caused by cyclosporine levels about 225, which Naomi’s is around 250, and that as long as we keep her creatinine levels safe, there is little concern. She did advise that we add some sodium bicarbonate and salt Naomi’s food as much as Naomi desires since sodium makes her more alkaline and that would help balance the potassium in the body. She also recommended no more meds to lower potassium unless it goes above 6.0 and scheduled a quick ultrasound for next week just to have records of what Naomi’s kidneys look like post-transplant.

Dr. Pawlowska entered next and while reviewing her lab results, we were thrilled to see the best WBC and ANC counts ever! At 4800 and 3800, respectively, we could not be more thrilled with how well Naomi is doing. Late let’s are still above 200,00, too. Dr. Pawlowska repeated a few times how fantastic Naomi looks and how great she is doing. Thank God! Again, I am so glad that Naomi’s doctors do not talk down to us and treat us as a team members. They told Naomi how well she is doing drinking and that inspired her so much that I did not need to remind her to drink coming home tonight. She did it all on her own, seeing that her work is paying off.

Also, a good report was that Naomi’s weight has increased again. She now weighs more than ever before! This is a huge accomplishment as she lost quite a bit of weight while sick. We made a deal with her last week that she is required to eat no less than six bites of whatever is served to her (since she is six years old). Being a determined child, she accepted that, and often exceeds it just to prove she can! 🙂

We enjoyed lunch with a friend while in CA and then drove home through evening traffic. The 3.5 hour trip took almost 5 hours. I am still so thankful to be HOME after a long day of traveling and appts rather than stay at the hotel.

We are nearing the 100 day mark and are discontinuing some meds this week. Next Monday will be an important appt to see how Naomi does over this next week without Renegel to lower her phosphorus. Also, as the week continues, she will run out of her anti-fungal and we are going to see how she does without it. That makes me a little nervous…. Any advice BMT moms? Heather? Vicky? Jennifer?

Naomi, Lauryn and I woke at 5:30am and left by 6am to gas the car ad head to COH. It was a smooth drive (except that my Kindle battery died and I was without an audiobook).

Our lab appt was quick. We chatted with some friends we’ve made by being there for appts each week together. He was a 49 year old man whose mother was his careperson. In her late 60s, she was going through a parallel experience with me. He is a month behind Naomi in recovering and will reach his 100 days in May. His was a stem cell transplant through a PICC line in his arm and he was spared a chest catheter, like Naomi. His donor was his younger sister who is also in her 40s. Due to his being larger than his sister, she had to donate over two days. They were such a sweet family and we will miss seeing them.

We have changed our weekly appt day to Mondays and will no longer bump into them at COH, sadly, but a Monday appt is better for our family. It will allow us to do school work 4 days straight (Tues thru Fri) and allow Aaron to be in the office most of the week uninterrupted.

Naomi’s appt was fairly normal with fluctuating numbers and high potassium. The drs are not too concerned about the high potassium but did some additional blood and urine samples to determine if she needs to see a nephrologist. The nephrologist is on the floor on Mondays – another reason to switch to Monday appts.

Naomi’s platelets were really good again at 259,000. Her WBCs and ANC dropped a little low again. Her “low” ANC is now 1200, so I will not complain. We expect this to happen and nothing is alarming about it.

Being home has been fantastic. We had three wonderful school days this week. Our home is looking organized and like HOME again. Emotionally, things are stabilizing and everyone is settling in pretty well. We have not been having the emotional outbursts and releases of frustration we experienced the first few days home. Caítriona is still very anxious about my leaving her. She has slept with me pretty much every night and does not do well with me walking out of the room (much less the house!) without her. She has been most traumatized by all of this.

Naomi has been doing some emotional clearing of her own. She talks in bits and pieces, mostly at bedtime, to work through everything she has gone through. In some ways, I think she is accepting it all exceptionally. But sometimes she will say things that make me realize she does know how sick she was. When she says things like, “you took me to the hospital many times for transfusions or else I would have died,” she does so in a way that I feel it stab my heart and force myself to be thankful to God rather than full of fear. She talks of St. Rose and COH as places where she was saved and does so with a grateful tone. She is extremely happy, active, cuddly and affectionate. That makes my heart happy. She is so normal that I sometimes forget she is receiving treatment!

Next week will be full of adjustments as we go to COH on Monday and Aaron returns to the office. It is a new start to a new life and we are Blessed to be able to start back to something normal. We are all excited for a new start at “normal” and pray that Naomi continues to improve and be well.

Naomi spent about 45 minutes on Sunday learning how to ride a bike on two wheels. By Monday afternoon, she was racing down the sidewalk. I have to admit that the bruises on her shins make my heartbeat increase. I am happy to say that I have only felt her head with my palm for the past two days instead of chasing her down with a thermometer multiple times a day. I am becoming more discreet with the palm check, too, doing it while hugging her mostly.

It has been great to be home. It is liking moving in all over again. We have been cleaning house. I mean REALLY cleaning house. Decluttering, reorganizing, redecorating. We started the full schedule of our new homeschool curriculum this week, too. Back in CA, we had poked around at it some but did not fully implement it. I am wondering why I did not go to a curriculum before now! We all are really enjoying the Mother of Divine Grace Catholic Classical approach to homeschooling. It is the best of homeschooling and Catholic school combined. It took me only 5 hours to complete the lessons with all 5 homeschooled children on the first day! That is amazing, considering that they are all at different levels for most subjects. I was able to combine a few classes for them to make it fun and family-oriented.