Naomi’s first night at home was her last night in her loft bedroom alone.

Without need for infusions during the night anymore, I saw little reason for her to need a room of her own anymore. I was not sure what type of reaction to expect from Niamh and Naomi about sharing a room since they had been arguing a lot right before Naomi was diagnosed and moved out of their bedroom. But when Aaron told Naomi that she could move back into the top bunk, the cheers were earth-shaking. I anticipated a more difficult adjustment than was the reality. All of the girls were thrilled to help Naomi move back into their room. My heart and home are full.

Naomi had EXCELLENT counts today and we are going HOME between weekly appts!

WBC 3.2
ANC 2.3
Platelets 189,000
RBC 3.46
Hemoglobin 10.4

Tonight, we will sleep in our own beds. I cannot express how happy we all are and how blessed we feel that Naomi is recovering so well!

Tuesday was a day of sleeping.  On Monday night, I turned off my alarm and decided that I would sleep as long as I needed and we would do meds as soon as we woke on our own.  I woke up, looked at the clock and saw that it was only 8:30am and returned to bed immediately.  I was shocked to wake again at 12;20pm!  Naomi was still asleep beside me, until I jumped out of bed and said, “oh shoot, you need meds!”

Months of sleep deprivation have caught up with us, and finally with Aaron having all the other children, I am taking full advantage of sleeping-in.  Obviously, being awake at 2am, I am still not going to bed in a timely manner though… it is for good reason.

Naomi and I were excited to see Day +70 arrive and so we napped this evening.  After sleeping until after noon, and then napping after dinner, here we are ushering in Day +70 together over ice cream and a movie.

We decided to watch The Secret Garden tonight.  I found so much healing and symbolism by watching this movie with her.  I could relate to the maid who “kept” the little boy sick and had to laugh when the nurse said that his flushed skin and legs and his increased heart rate were a sign he was ill from the fresh air.  I also gasped when all the people stood around him with masks on, afraid they would make him ill.  I just might hand out masks for anyone who visits our home for years to come, especially if you sneeze or cough – so be warned.  😉

Naomi and I found such symbolism though, too.  As the flowers in the garden began to bloom, it occurred to me that Naomi’s illness coincided perfectly with the seasons.  She fell ill in September 2013, as fall began.  Her condition deteriorated with the continuation of fall and the start of winter.  As winter began, and the year turned to 2014, we prepared for transplant.  Through much of the winter, her blood counts were fluctuating and the future was uncertain.  Now, as spring begins, her recovery is happening simultaneously.  At one point while watching the movie, Naomi said, “it is springtime and I am blossoming like a flower!”

Blossoming, indeed.  Some flowers have thorns, as does Naomi’s favorite flower, the rose.  To help my rose bloom, this gardener has had to wear her share of gloves and beware of the thorns.  The biggest thorn these days is procrastination at doing what needs done.  I have to admit that spending so much time with Naomi over the past six months has made me realize a lot about myself by seeing how much like me she really is!  Our similarities are likely why we go head-to-head at some point most days.  I would like to think that we have both learned much about ourselves during these months.  I also find it interesting that I considered the name “Rose” as Naomi’s middle name which would have honored my Great-Grandmother…. then, she named her baby doll that and chose it as her favorite flower.  It is funny how life works sometimes.  Rose would have fit her as a middle name pretty well, I think.  

As we head into what we hope will be our last weeks here, I still have a list of started posts that I WILL work on finishing…. ahhh, there is that procrastination, again.  Oh well, for now, I am really enjoying time alone with Naomi.  We created a drinking game of our own tonight while playing soccer in the room.  Whenever I scored a goal, she had to take a drink.  We also played some computer games and even won twice on one of the most difficult cooperative games we have called Forbidden Island.

Last night, I finished knitting a scarf that took me way longer than any scarf should take a person to knit.  Today, I fully intended to do a swatch to begin a sweater for myself, but playing with Naomi made the day fly by.  With the weather being cool and cloudy lately, we have not ventured anywhere.  I think we are due for a trip somewhere tomorrow (today!), maybe.

We are so thankful for the support and encouragement of everyone over these past 70 days, and even before that.  As I look back tonight over how far Naomi has come, I cannot help but see hundreds of you behind the scenes holding us in prayer, devoting family rosary hours and Masses to her, having entire congregations remembering her constantly, the special offerings and gifts of many, the packages that came in the mail, letters, cards, emails, comments on the blog…. each of you have had a part in this that has carried us through the most difficult days.  

As difficult as this has been for us, I force myself to look beyond our circumstances at the many I know of with Aplastic Anemia who are struggling so much more than Naomi.  Ashley is preparing for transplant.  Shelby has moved to New York to participate in a clinical trial.  Shelby’s sting was made a little lighter by a visit from Taylor Swift this weekend, but her journey started before us and continues still.  There are many without donors, dependent on transfusions, or attempting ATG for a second, third, etc time.  Some, still, who are not eligible for a transplant and part of clinical trials at Johns Hopkins or other places.  The journey for everyone diagnosed with Aplastic Anemia is different.  Naomi is so young and I have hope that she will go on to live a full life that is not too altered by this experience.  As her and I talk through some of what she is thinking and feeling though, she has mentioned that she remembers how much she loved gymnastics, but this feels like all she has ever known because it has gone on for so long.  My prayer for her is to be able to be a child again.  I want a return of innocence for her.  She was robbed of the carefree days of childhood for too long.  I just want to walk into the dr’s office and say “it is time to go home and remove the catheter and LIVE again!”  I know though that the challenge will be to find this new life for us all.    

A year ago, I had no idea what a new world I would be a part of today.  I never imagined a child of mine would be in need of a transplant.  I would be lying to myself if I ever really thought that life will ever be the same again.  Having been thrust into this world, I cannot help but become an ambassador for the many who need donors.  Please consider becoming a blood and bone marrow donor, if you are eligible.  

Nights before labs are becoming just another night of sleeplessness.  Last night, I was unable to fall asleep until around 3am.  Meanwhile, Naomi kept flopping around our bed and woke throughout the night a few times to take drinks.  At one point, she woke and  sat up fast and said, “I am not tired! Did I really just fall asleep?”  I replied that she fell asleep hours ago and she should be exhausted because it was 2am…

In the morning, when the alarm went off, I got up and started to get ready.  It was Naomi who poked around though, complained she was tired and did not want to go to the appt, and made us late.  We each handle the appts in an opposite way.  She falls asleep just fine but does not want to wake or get ready to leave.  I cannot fall asleep and then want to run out the door as as soon as the alarm goes off to get the labs over!  We are quite the pair.

Our appt today was mostly positive.  Naomi’s levels are all holding steady with just a slight ANC increase from 1300 to 1400.  Her kidneys and liver continue to be happy.  The herbal teas continue to do what we need them to do keeping her toxicity levels low while still keeping her hydrated.  I am cautious to not overuse the herbal drinks considering that some of them can be diuretic and that is the opposite effect we need right now.  But the low amounts I gave her this past weekend did exactly what we hoped.  

Today was also the first appt that her potassium and phosphorus levels were not too high.  We are finally able to stop the med that lowers her phosphorus and because her kidneys have been happy for a full week now, we are going to restart her acyclovir.  

We head back to the lab on Thursday.  If all is well, we can then go to once per week…. Aaron and the other children are all home.  It is so hard when we are in different states but everyone being here for too long gets crazy, too.  Hopefully we will be home soon.  

Labs today were great! Across the board, Naomi’s counts rose. Her ANC is 1300, WBCs 2300. Her platelets rose to 219,000 and her hemoglobin went up .3 to 10.6. The hemoglobin was a small jump, but everything jumped quite a bit.

We spent Monday, Tuesday and Wednesday pushing the fluids on Naomi. She has been drinking Traditional Medicinals Burdock with Stinging nettle for kidney function; Every Day Detox with Lemon for liver health and taking cranberry capsules. We have been pushing 72 ounces per day on her. It has been challenging at times but it was very well worth it since her dr was “very, very, very impressed” – her words.

If we can maintain the liver and kidney function throughout the weekend, we will be back to once a week appts.

Her one nagging issue continues to be high potassium levels. She was given the milkshake med today to flush the excess potassium. Hopefully now that her kidneys are functioning better, that will drop and stay low, too.

We will celebrate Micayah’s birthday this weekend and spend time as a family. We are very happy for her wonderful labs today, but it is quite a challenge to maintain these fluid intake levels for her!

Monday was Day +61. That makes today Day +62.

It has been a busy few days here and I have been unable to update since Naomi’s appointment on Monday morning. While her platelets increased and her RBCs looked fine, her ANC dropped again, and her kidney function levels increased, indicating that she is not drinking enough liquids, again.

These two issues -the WBCs dropping and the creatinine levels being too high – are most likely related because an increase in kidney function will affect her levels for her cyclosporine. The cyclosporine will not be as usable by the body, and less absorbed than desired, and therefore, her engraftment will lack.

On Day +30, her engraftment test came back at 98%. Due to her falling numbers last week, the test was repeated and this time only came back at almost 94%.

Since a lot of this is based on her not drinking enough liquids, and since that has been a continual struggle between her and I, I have gotten very serious and taken charge of the matter. I want to go home.

Last week, on Thursday, her liver was functioning poorly. The dr gave me permission to use essential oils to try to bring those levels down. My attempt was successful as her AST and ALT both dropped significantly between Thursday and Monday, even with inadequate water intake.

Another good thing is that she is finally gaining some weight, likely because we are at the hotel and eating better.

Now, I am going to continue those essential oils to keep the liver protected and add some herbs to see if we can’t get those kidneys a little happier. Adding these things to her diet while needing to increase her fluids required Aaron to bring me my VitaMix (a good excuse for him to come visit!). It also requires extra time on my part to prepare and then “work” with Naomi to have her cooperate. Having the other children here is a huge help on the motivation end. Making tasty smoothies with the VitMix doesn’t hurt either.

After two good nights of sleep, we are doing pretty well here. Naomi, Cait and I enjoy quiet days and visits from friends. Moving back near the hospital has been great. We got laundry do e at COH on Saturday, took a walk, threw pennies into the wishing fountain and ate ice cream. On Sunday we rested, napped, and rested some more. Naomi got to take a bath for the first time, too. The RMH did not have a tub for us. She was thrilled to splash around a bit.

Naomi, Cait and I spent the past two days moving out of the RMH. We are now in a hotel efficiency and i am already finding life much more simple.  Sleeping here was great!  No distractions or being woken in the middle of the night.  We went to bed when wanted.  The room was dark and restful.  I am very happy we made the move.  The move was so simple thanks to the help of some friends.  I ended up connecting with a friend of Aaron’s who happens to be in the same town as me and he and his wife have been a huge help to me.  It is true that life is what you make it.  Good friends come out of the woodwork during difficult times.  We are blessed to have a network of support that reaches across state and city lines. 

Friday at the lab was pretty uneventful. With only two children, I was able to manage just fine and there were no episodes of screaming.  Cait was quite pleasant, not having Niamh to argue with and all!

Naomi’s WBCs are now up at 2000 (2.0) and her ANC at 1100 (1.1).  We are very excited to see it climb even higher.  At some point I remember being told that ANC of 1500 is the magic number for her to be able to go HOME.  She continues to have no signs of GVHD which is what we expected with a sibling donor.

Naomi and I continue to butt heads throughout the day in matters of meals and medicines.  She sure is feisty, but I think she has met her match with me.  I did tell her (sarcastically) on Friday to just put the lid back on her medicines when she is finished looking at them.  She glared at me.  I said that it was up to her if she wants to take the meds and get home or live in a hotel for the rest of her life.  I reminded her that her Dad, cats, bed, and siblings are waiting for her at home.  We have seen this week that an increase in cyclosporine gave her a boost in her white blood cells.  SO, by extension of that thought, taking her meds DOES make her get better.  I reminded her of this and then walked away to wash dishes.  With a milkshake and a firm lecture, the meds were taken within 5 minutes.  This was much preferred to the 47 minutes it took her the previous evening!

As for meals, I am hoping they improve here at the hotel.  Naomi loved the yard at the RMH but thought staying in the house itself was “creepy.”  Now that I can really put some love into mealtimes, I am anxious to see if her eating improves.  This is much more private and I think she will feel better about eating here since there is no one watching her eat.  

I also have secured two women who volunteer at the RMH and provide Nanny/child care assistance on the side.  While staying at the RMH, they could only help me while I was at the house and not when they were off-duty.  There was something about them not being allowed to work with me privately due to a contract they signed.  With Naomi not being allowed to go into public stores and such, the rule that they could only play with the children while I was there did not allow me to do necessary errands.  Now that I am no longer a guest there, I can hire them privately.  I took one of them along with me to the clinic on Friday to help with Cait and then to be with Naomi while I did errands  I have never hired a mommy’s helper before in my 13 years of parenting.  I need to find some willing teenagers to do this a day or two each week, at least!  

The emotions of Thursday were something I will likely not be recovering from anytime soon!

During labs, Cait and Niamh were SCREAMING at each other and I had to whisk them both up in my arms and run out of the lab, leaving Micayah to be with Naomi. They were DONE with the clinic since they had been there three days this week.

Before we even walked out of the hospital doors, a nurse from the lab called to tell me that Naomi’s counts dropped again and she would be needing transfusions. Her hemoglobin had dropped to 7.9.

While exchanging information, there was some miscommunication about Naomi’s white blood cell count. Long story short, I heard her say ANC was .1 and asked in absolute shock, “ANC is 100???” which would have meant that the graft was failing. She replied, “yes.”

The world started spinning. My stomach twisted and I felt instantly nauseous. I looked at Micayah and thought that the transplant would need to be repeated and how he might take the news. I quickly texted Aaron and said I needed him to start making his way to CA because with counts that low, she would likely be readmitted. During that window of time, until we met with the dr, if I had a bubble, Naomi would have been LOCKED inside. It was truly the worst moments of my life! During this time, we all went to the fountain, made a wish and threw a penny into the water. We undoubtedly all asked for the same thing: a miracle. God hears prayers.

We finally went into the exam room a little after 1pm, two and a half hours after the labs were done, and 2 hours after the news had been phones to me.

When the dr came in the room, she did not seem anxious at all and was friendly. I asked why her counts dropped so much and she asked what I meant. Now, she looked confused and said that only the reds dropped and not terribly, but enough to transfuse. She quickly opened the chart for me and we looked at the labs together. God hears prayers.

Hemoglobin had dropped .5 to 7.9. The threshold for needing a transfusion is 8! She had just needed a transfusion. The ANC was NOT .1 (100). They were 1.1!!!!! That was just fine and indicated her marrow was working very hard she was not experiencing graft failure. God hears prayers.

The difference of a 1 from. 1.1 was enormous. It was a relief. Naomi was thrilled she would not need to readmitted. I removed her from the bubble in my mind, but I am still in a bit of shock over it all.

Aaron, however, was on his way here already. He ended up rescuing me and taking most of the kids home to give me a break. A true dad, willing to take a few weeks off of work so that I can dote on Naomi and recover from the roller coaster of AA.

This disease leaves us constantly on the edge of our seats. We cannot let our guard down for fear of being taken by surprise. We are back in the clinic today. 4/5 days this week. What a week! I would have never expected to be in this situation of needing a transfusion at day +57. But we are thankful the whites did not drop like we had thought they had.

Naomi needs a transfusion today.

The little kids are DONE with being at the clinic.

Today is extremely difficult. Please pray for Aaron as he travels here to pick up the children and for Naomi as we wait for our appt. with the dr. Also, please pray for me as I am barely holding on right now.

Day +57, 64 days in California, 32 days at RMH

I am exhausted and even took melatonin, and yet, here I am awake at 4:30am. This is the week that Aaron is gone; so, I sleep very little. By Thursday, I am running terribly behind on sleep and then when he arrives on Friday, I can finally crash.

On Wednesday, Naomi’s temps were a bit high-for-her, but not high enough to be concerned. Her temp usually runs around 97.2-98.2. She was, however, running more around 98.2-99.0. I am hoping that is a boost of WBC activity which would mean a boost of WBCs.

Naomi needs her catheter dressings changed twice each week. Typically, we do this on Tuesdays and Fridays. I changed it on Tuesday , but already on Wednesday, it needed changed, again. As I changed it for the second day in a row, I noticed a bit more redness there than the day before. I will have to ask the nurses take a look at it when we go to the clinic on Thursday. There was no broken skin, but it looked more irritated and dare I say, inflamed. Just two tiny dots of redness, but enough that I noticed.

I am very anxious for this appt. Did her counts go up since Monday? I would have to think they did…. She is less whining, more active, and generally happier. When her hemoglobin drops, I can tell because she is extremely irritable. I cannot remember a time she yelled at anyone on Wednesday. She was quite happy and pleasant. She even napped! She sleeps better when her hemoglobin starts to rise. When her hemoglobin drops, she gets more restless, both while sleeping and awake. Labs on Thursday will see if my preliminary assessment is right!

I realized tonight/this morning how many drafted posts I have saved that I wanted to share but have not. I will make sure to put “edit those posts” at the top of my “to do list” for this weekend, right after “catch up on sleep.” Note that just because it is on a to do list for the weekend does not mean I will get to it this weekend. At this phase of life, my to do lists are generally ignored.

There were many things about Wednesday that were definitely not a highlight. None of us wanted to leave bed, much less the house, but yet we all wished we could leave this house for home. It was a tough day emotionally and mentally. It is almost better on clinic days when we do not feel as though we are sitting around for no good reason and would much rather be home. Here all day, the kids tend to bicker more, find trouble more easily and there are the rules of the house that make life overwhelmingly difficult. With six children, and Naomi supposed to be in isolation avoiding the other guests here and the common indoor area as much as possible, it makes me crazy.

One of the rules is that I must have all children with me at all times. Well, it obviously is NOT gonna happen. There are times that I must run down to the kitchen for something in the pantry (another rule is that no food or beverage are permitted off the first floor), and have to haul more kids with me than is rational. There are times when I need little ones to nap, but cannot get them down to sleep because there is nowhere for the older children to go without me. I have been reprimanded for having children alone in the playroom right across the hall where I could hear them playing while I cleaned the bedroom. Then, there are times I just need to be alone…… And so I wake at 4:30am even though completely exhausted just to clear my head.

There have been countless times when Aaron or I received “reminders” about needing to be “with kids at all times.” So, it is difficult to navigate here because while we know the rules, we cannot reasonably follow them all of the time. Yet, those rules ARE always right there in our minds (as we break them) which causes us stress. It really makes being here a complete drag. I will not even get into the FACT that my home is so much cleaner, and, I feel, safer for Naomi to recover. I have been very willing to drive the 3-4 hours as many times a week as necessary if I can just sleep in my own bed and cook in my own kitchen. But the dr has not allowed it.

We continue to consider our options. I have looked for short term leases on rentals, considered the expense of moving back to an Extended Stay, and also contemplated going home and not telling anyone! Obviously, we are still here because of the cost factor. Who can beat $15 per night for a family of 8? But it is really tempting to have more privacy at an Extended Stay or even sleep on the floor or buy air mattresses if I can find a month-to-month rental that fits into the budget that our insurance will reimburse.

To be fair, there are some good moments here. Much of the staff is very kind to us, and show concern for Naomi, allowing her to eat in the room while under isolation orders. They have been helpful and patient with us while I got school curriculum delivered here in multiple shipments over the past two weeks. Also, many of the volunteers here will bring meals a few times a week, giving us a break from flooding the kitchen or waiting in line to cook.

The highlight of our day on Wednesday was when I was about to start making dinner and someone came with a donated meal for the night. I was so happy to not have to cook. I was ecstatic when I realized it was not just any food, it was Chipotle! Hard shells, burritos and tortilla chips with all the fixings you could imagine. It was quite a spread. All of the children had an instant appetite, even Naomi who ate a TON of good protein and a variety of food groups. Yeah, that kind of took away the sting of all the difficulties we had throughout the day. But we still miss home…… Well, the hall light just went on two hours early. Think I will go turn it back off since it shines right in our window on the door and onto our beds, directly into our faces while we sleep. It also wakes kids way too early.

Preparing to Leave

Tuesday was Day +55.  It was such an awesome day.  Even before the children woke, I dressed, folded and put laundry away, had some quiet time, and prepared for the day.  I helped children to get dressed and fixed their hair as they woke.  It was a silky smooth morning.

We did leave for the hospital late, again, since a child could not find his water bottle.  After searching the van, the room, the laundry room, the pantry, the bathroom, and the backyard, I quit and returned to the van where it was all along…..  Amazingly, we arrived at the clinic only 2 minutes late.  There was no traffic on the highway!  That was divine intervention.  Actually, I am fairly certain the whole day was divine intervention….

Clinic

We went into the clinic for labs at 11:10.  At 11:20, we were finished but had to hang around until the results were back.  I was told at 11:20 that it was only taking 20-25 minutes… We went downstairs to find a place to sit.  The clinic is under construction and some waiting rooms are closed to “hard hat only” entrance, making it very difficult to find seat and entertain kids.  Having been at the clinic all day yesterday, many of our electronic devices required plugs today and there were none to be found on the clinic level of the hospital.

On our way downstairs, Cait refused to give me the LeapPad and was just pressing buttons waiting for something to happen.  I think this was our funniest moment.  We went from the 3rd floor to the 2nd and more people got onto the elevator and it was jammed.  As the door closed, Cait managed to press the button to play music on the LeapPad and it started playing “Punk, punk, Punctuation” and she sang along.  In a full elevator, she was pleased with herself for having turned the song on and bounced her knees, swayed her hips and sang along.  As the elevator stopped at the 1st floor, it rocked like it always does, and the lyrics appropriately said, “we’re gonna rock this joint!”  All six of us besides her were laughing so hard we were crying.  It was truly a stress-busting moment.

In the Cafe

In the cafe on the first floor, there was an empty table that we promptly claimed.  Empty tables are very hard to find in that area.  Unfortunately, this particular table was right next to a very busy walkway…. We all did well playing games on the iPad while I took children one-at-a-time to the restroom.  Using a restroom in public sets off my germphobia in a major way.  I am afraid to admit how many toilet covers I use for the little ones and the ends to which I will go to not touch anything in there.  Even Cait knows to put her arms up (like she is about to be searched) and NOT.TOUCH.ANYTHING.  So, picture that times 4 girls…..

At 12:15, we started getting antsy.  It had been threetimes longer than I had expected to wait…. So, I gave up my self-denial and handed Micayah a $5 bill and told him to go get me a large iced cafe mocha.  I needed it.

Just then, an older gentleman came over and said, “just how many of there ARE you?”  I said that I have six children and he nodded his head, said that he thought was how many he counted, and told me that I am doing a great job parenting.  Did he hear me lecture my son telling him that he looked like a punk with his arms in his sleeves and him slouching on the seat?  Or maybe he heard me telling my daughter that the world does NOT revolve around what she wants and that we take turns when playing games together.  Maybe he heard the repeated reminders I gave another daughter when I told her that she would NOT be getting a snack from the cafe’ because she never finished her breakfast…. Did he see me chasing a 2-year-old in one direction while the 4-year-old ran the opposite direction screaming at the top of her lungs because she had to finish her breakfast and not get a snack.  Yes, I needed that iced coffee.

The man asked where my oldest was and I pointed to the kiosk where Micayah was getting my coffee.  He nodded his head and waved while I tried to soothe Cait who wanted the LeapPad that Naomi was using…

Just then, three women we had met upstairs came past the table.  The women smiled and waved.  It ends up they had seen us yesterday.  When they saw us today, I was trying to locate a bathroom for Cait and one of these women showed me a really clean private restroom.  Score!  While waiting to go into clinic today, I chatted with the women and we got to know each other.  A survivor of breast cancer, she has been coming to COH for 13 years and could not say enough good about the facility…. and my kids.  She said she has never seen a family like mine there in the halls.  I hear comments like that often and wonder what kids they are seeing!  The woman who I talked with the most gave each of the children $1 bill.  I gave them each a second $1 to go get a snack.  They were thrilled.

While they ate their snacks and I drank my coffee, Malakye asked if I knew all those people.  I said no, but that they all came to me to tell me I was a good Mom and that my kids were special.  It was eye-opening for him that people see us and watch us and know us…. even if we do not know them.  It was a great time to explain how there are a lot of people out there walking around alone and we might remember some of them.  But we are a group of people and we tend to stand out. Besides my devotion to raising good kids, I am also quite self-conscious of what others think enough that I realize others are watching and so, I expect good behavior.  If someone sees a large group of people moving through the hallway, they will remember us.  I am happy that most seem to remember us for good behaved kids….. and not punks hiding inside hoodies….. or 4-year-old screaming down the hallway…… or a toddler throwing herself on the floor screaming “no, no!” about a LeapPad.

While discussing all of this while enjoying our snacks, Micayah said that the gentleman came over to the kiosk after talking to me and then paid for my coffee.  I had no idea!  I will maybe never see that man, or those women again, but their kindness during what was the most stressful few minutes of my day made me look at the whole day differently.  Imagine what a difference we could each make in the world if we simply found the good in people and reminded them of it at a time when they were struggling most.  When going through difficult times, so many people simply say or do nothing because they do not know what to say or how to say it.  Simple things like a coffee and some snack bars spoke volumes to our hearts today.

This is not a great copy, but perhaps you can hear the Punk, Punk Punctuation lyrics and go rock to it in an elevator somewhere.  🙂

An Afternoon Off

After 2 hours, we were finally informed that Naomi’s potassium levels had fallen from 6.4 to 5.2, and while still a bit high, there would be no more medicine today and we could leave.  We were so excited to have the rest of the afternoon FREE!  Some of the children wanted to go rest at the house; others wanted to find a playground; yet, another wanted to go back to Eaton Canyon, but not to hike…. she wanted to dance and sing on the stage there!

One of the things I want to do while here in CA is visit some of the 21 Catholic missions established in the state.  We are fortunate to have a couple right here in the Pasadena/Los Angeles area.  I decided to try to find one…. we found ourselves at San Gabriel Mission. We walked around outside the mission (established 1771) and the cemetery on-site. We visited the gift shop and an employee there asked about Naomi’s mask. After I explained, she told me that a Claretian Priest buried there at San Gabriel is going through the process to be beatified. He had a reputation for being a blessing to those who are sick. Interesting we should land there today after hearing yesterday of Naomi’s falling counts.  You can find more information about Father Aloysius in this article.

We spent some time in prayer at the altar in the mission church and at the burial site of Father Aloysius.  We left San Gabriel Mission with a heart full of thankfulness and hope, renewed.  I also purchased a book to learn about and help teach the children about the CA missions.  Of course, there would be a holy water fountain with a lion’s head on-site, too.  Divine intervention!

Night School

In the evening, I was able to get Cait, Niamh and Naomi in bed early.  Then, the older children and I started our new school curriculum.  We really enjoyed our time together and love our new classes.  I was in need of a good day like this.  Wednesday is another day away from the hospital/clinic for us.  I think I will be taking someone to dance and sing on the stage at the Nature Preserve.

We had some very disappointing news today.  All of Naomi’s counts fell significantly.  I anticipated it because her legs were quite sore and she asked for a wheelchair to walk in there.  While the other children ran and played, she sat in the stroller or on the lion statue, but did not seem interested in running around.

She had a fairly busy week last week.  So, maybe it is just that she needs to rebuild after being so active and playing so much?  We will be monitoring her labs more closely again and head back to COH again this week.

For the past few weeks, her cyclosporine levels were below therapeutic level.  Her dr was not wanting to increase the levels though because her creatinine levels were very high.  Creatinine affects the body’s ability to absorb cyclosporine.  We were waiting for the creatinine levels to lower so we could see what the cyclosporine levels actually were.  Today, her creatinine levels were in normal range, and her cyclosporine was still low.  So, her cyclosporine dose is now being increased.

Also, her potassium levels have been consistently high.  So, our clinic appt was extended today to deal with that.  After we sat in the field, we went for her appt with the dr.  The dr wanted to retest her potassium.  So, we did.  After waiting another hour for results, we found that her potassium went even higher than it was in the morning.  So, she was given a milkshake medicine to drink to help her body excrete it.

Tomorrow, we have to return to have her potassium levels checked again.  She may need to repeat that medicine.  Also, she is restricted from all potassium-heavy foods: avocados, bananas, coconut water and milk… things she really likes.

Then, we will return to COH again on Thursday for another check on her levels.  Today has been so disappointing.  We have been so blessed with her progress-to-date that this decrease in her counts feels like a bucket of ice water.  We always knew fluctuations could happen, but these counts seem drastic.  Her RBCs are lower than the day she was discharged, and her last transfusion was given at 8.2 hemoglobin.  Today, she was at 8.3.  Her WBCs are slightly higher than they were the last time she was without G-CFS for this long.  ANC was 300.  Now it is 500.

The dr also sent for a chimerism test today to determine what amount of her cells are Micayah’s and what percent are still her own.  The best news was that the dr was not concerned about the bloody nostril issue.  She believes that it is just dry sinuses.

After a month of clinic appts, I finally got it right today by packing lunches and snacks last night, each in personally marked lunch bags with individually wrapped sandwiches and surprise snacks.

While waiting for labs, they ate bananas and waited patiently. Labs went quickly and then we went outside to enjoy lunch in the shade. I treated them to a drink at the kiosk while I got myself an iced mocha.

After lunch, the kids ran around a bit and Naomi sat in the “Lions Circle of Hope” and made some bracelets.

We headed back to the clinic to wait for the appt with the dr. The anxiety is overwhelming. Waiting for results from the labs is just too much.

Naomi had a bit of a bloody nose last night. Just a tiny spot inside her nose. No trickle. No running. It was just there inside her nostril and was easy to clear. I hope it was just a result of the weekend prophylactic that she takes. I seem to remember her having this issue before the transplant while she was on this med. I worry it could be a virus symptom. The fact that it clotted so well and did not trickle helps me to think her platelets are still fine. While she has done so well with her recovery, her low WBCs give us concern and the fact that rejection could still happen is in the back of my mind. I will need PTSD counseling when this is all over. And a 12 step program to stop worrying about if the environment is clean enough for her.

Any blood from her sends me close to hysterical. How will I ever be able to watch her do gymnastics again?