6 more days until day 200! It snuck up on me, really. We have been so busy being…… normal. So, I do not know what we will do that day to celebrate. We usually attend Church in the morning and then crash at home the rest of the day. So, we will have to have a family discussion about it.

Naomi’s appt today was fast and fantastic. Her labs were the best ever, I think.

WBCs 6.5
Hg 11.6
RBCs 3.48
Plt 391
ANC 4400!

Such awesome labs! That is my word today: awesome.

The doctor’s word for the day was “fantastic.” We saw Dr. Walsh for the first time since before the transplant. She raved about how fantastic Naomi looks. All Naomi’s vitals were perfect and she said Naomi looks “fantastic.” When coming back with the lab reports, she said they looked “pretty fantastic,” too.

In other news, if you are not a Facebook friend, then you likely missed the announcement that Wilson Baby 7 is due in late January. Girls 5, Boys 2. Final score?

We are all doing very well and have slacked on school the past few weeks to just BE. When Naomi and I returned from CA, we kind of jumped back into a school routine. Now, we need a bit of a summer before summer is gone. Monsoon season is here. We are appreciating the thunderstorms and ability to dance in the rain.

Thank you for your continued prayers and support!

While at COH last week, the lab drew blood to send for engraftment analysis. The report came back today. Naomi has 98% donor cells. This is an increase from 97% donor cells on her last test at Day 100. Moving in the right direction!

A trip to COH on Thursdays is awful for us.  Due to the dr having been unavailable on Monday, our only option was Thursday.  When we go on Mondays, it is so much easier because the week has not begun yet.  But going on Thursdays means we have normal life interrupted by that trip.

Fortunately, we were in and out of the clinic very quickly on Thursday.  The lab was busy and we were called about 35 minutes late.  After leaving the lab, we grabbed a snack and ran upstairs to the clinic.  There, we did not even have time to complete our snack before she was called in for vitals.  

As far as vitals were concerned, she was perfect.  Her labs were delayed a bit and so we talked about other things.  I was informed that COH typically starts re-immunizing at 6 months after transplant.  I was surprised by this because of the cyclosporine (immune suppressant) she is on still and will stay on until Jan. 2015.  I declined any vaxes at this appt., said I would do my research and we could talk next time.  Most research I’ve read recommends a flu shot at 6 month after transplant, but no vaccines until after cyclosporine ends.

We discussed flu season and what precautions to take.  The dr does not think a mask is necessary…. I have broken out the OnGuard essential oil blend, put some in a roller bottle for Naomi and instructed her to use it like hand-sanitizer multiple times a day.  She is also very good about keeping her hands away from her face and washing her hands often and well.   

Her labs were delayed by the lab and most were not ready by time we left.  Those that were back were a bit on the low side.  I received a call from the Nurse Practicioner while driving home and learned that her cyclosporine blood levels were nearly double what they should have been and her kidneys are not happy about that.  Her creatinine was over 600.  Usually, they are around 300.  So, we have increased water intake, again.  Poor child.  And decreased her cyclosporine dose.  We go to the Vegas dr next Monday (a week from tomorrow) to have the cyclosporine levels checked again.

It continues to be unnerving to see her labs go up and down repeatedly.  I know this is common after transplant.  I know other parents have lived through it.  I see how active she is and how well she lives and I know the drops are temporary.  Honestly, I cannot wait for the cyclosporine to be gone.  The research all indicates that patients that stay on for 1 year have the best recoveries.

While at COH last week, they drew blood for an engraftment analysis.  That will tell us the percentage of her marrow that is Micayah’s and hers.  Last time, it was 97% and 100%.  There are two different elements of the blood tested.  I am not sure of the difference.  So, I will be curious what it is now.  While her counts were lower than recently normal, her “baby cell” counts were still higher than normal which means her marrow is indeed working very hard.  We like that.  I always wonder how the drive affects her counts, too.  We do not eat as normal that day.  We do not stop for bathroom breaks much.  Our sleep is affected…Etc.  

WBCs 4.0 (normal)

RBC 3.15 (low)

Hg 10.6 (low)

ANC 2600 (normal)

Platelets 139

This time, we do not return to COH for FIVE weeks.  This is the longest gap of time that will pass with us not making that trip since November 2013 when we had our initial consultation there!  

At first, I titled this page “6 months down, 6 months to go!” because we are daily talking and thinking about the day when she is off meds. But at the risk of moving too far too fast, I changed it and made myself reframe my thinking as to the progress she has made and how much time has gone by since her transplant, since her last transfusion, since we returned home and since her Broviac was removed. All the time that has gone by that has allowed her to be a normal 6 year old that we are thankful for!

We celebrated with an ice cream cake last night. It was a surprise for the kids. We normally do an ice cream cake for my birthday, so I surprised them with one a few days early. 🙂

I was not prepared for the emotions of the day from both Naomi and Micayah….. ok, and myself.  At one point, I asked Micayah to do aomething for me and Naomi jumped up to run and do it.  He yelled at her that “Mom told me to do it!” and she answered very smartly, “I AM part Micayah AND Naomi!”  So, we all laughed and he hugged her.  They definitely have an interesting relationship.  Sometimes, when she is being a normal 6 year old, he gets mad at her for not being nice to him “after all he did for her” but most days they are very affectionate and helpful to one another.

As the mom, it is hard to think of all he went through and to remember how helpless I felt watching them both go through so much and I was unable to do anything to help the situation.

On other things….. since my posts are so few and far between these days….

Gymnastics is going very well.  On Day +173 Naomi got to ring the bell at gymnastics for mastering her back walkover from standing position with a perfect bridge.  I could not help but be the cheering parent in the observing room but ran from the platform to shield my tears.  If only those other parents knew where she has been….

I was cleaning out my purse the other day. I went into a section that I never use and was shocked to find a heparin flush. Ugh! I was happy to dispose of it quickly.

With Naomi loving to do her nails as much as she does, we have registered with Jamberry and will be having a Jamberry sale on her website (and elsewhere) soon. All proceeds will go directly to payoff her medical debt. We are under $5000 now, since the hospital gave us the discount that I posted about last week. If you are interested in checking out Jamberry, let me know, but please order from Naomi! Her website will be active soon.  But you can click here for some information.  http://www.jamberrynails.net/

Naomi and I will make the drive to COH tomorrow for her monthly followup.  Keep us in your prayers as we go down and back the same day.

We miss hearing from many of you and hope you are all well.

Today was mostly a normal day around the house, full of chores and deep cleaning. Naomi is one of these abnormal children who likes to help clean. Today, she wanted to dust – so much that she was willing to wear a mask to dust! So, dust she did.

In the afternoon, her and Lauryn ran to the mailbox. Upon returning, there were only two pieces of mail. One was from the local hospital where she spent 10 days when first diagnosed and then 21 days when diagnosed and treated for typhlitis. All together, her bill at that hospital was over $200,000 and our portion was about $8000. We had paid some but there was a remaining balance of $7200.

In April, upon returning home from CA and able to start dealing with finances, we applied for a payment plan or assistance of some sort to Dignity Health who runs St. Rose Siena Hospital.

In June, we got a reply asking for more information about our family and income. I quickly replied, but the paperwork never arrived there on time. Upon calling Dignity Health 3 weeks after the updated info was sent, they had me fax it in to expedite our account.

So, when the envelope was there today, I was a little nervous. It was just last week that they reported our paperwork was all there and the account was being processed. I was THRILLED to open the envelope and learn that we were given a HUGE gift on day +175. They reduced our amt due by 84%! We are down to just a little over $1000 due now. What an incredible Blessing!

Naomi had gymnastics, again, today and continues to do well. We travel to COH late next week for her monthly follow-up appt. Depending on how you look at it, Tuesday or Wednesday of next week is 6 months since her new birthday, which was January 15, 2014. We do not have anything special planned…. not sure if that will change. 6 months is definitely something to celebrate.

198 days to one year. I have to say that we are incredibly Blessed for Naomi to be doing as well as she is.  Each week, multiple times a week, I find myself reading about another AA sufferer, often further along after transplant and not faring as well.  I have to often “X” out a facebook screen, say a prayer for the person I just read about, and be thankful that she is where she is.  When asked how Naomi is recovering, I repeatedly answer that everything that could have gone right for her has.  As difficult as some of our days are (because cyclosporine does indeed make her psycho more often than I admit publicly), I still feel incredibly blessed to be planning activities for my children over the coming months and not wondering who will keep them safe in my absence.

Our days are looking normal again.  We are gearing up for August when children will have activities out of the house multiple nights a week.  September will be a new start for us, completing one year since her diagnosis.  I anticipate some difficult moments, but one day at a time will see us through.

Today was our first marathon Monday in about 9 months.  Naomi had an appt for labs and check-up and a few children had activities.

At her appt, her labs were good.  Waiting for 2 hours to see the dr was not.  I miss COH which was almost always right on time.  We have to wait a few days for her cyclosporine level to come back, as well as her liver and kidney test results.  At her appt, it was also noted that she has gained almost a lb over the past month and increased a cm in height.

WBC 3.9

ANC 2100

Hg 11.9

Plts 391,000

I started my morning calling COH and getting her a new prescription with the increased dosage amount accounted for.  Last month, we had 300 capsules delivered but she needs 390 per month.  It was surprisingly easy this time.  Having gone through this a few times, I am less stressed calling for refills and prescription changes.

This evening, Naomi had her first of two gymnastics classes scheduled for this week.  This is the first week we will have two classes.  With as much flipping around as she does at home, I cannot imagine her being any more stressed or overworked by being at the gym on the mats.  Today was the first time I went upstairs to the observing window to watch.  It was there, in the same place I watched nearly every week, that I first saw her sick.  I have a certain area of the observing deck that I like to sit.  It was there that I looked down at her from the window last September and saw how tired and weak she looked.  I saw her sit between exercises when the teacher was watching other students.  I remember her looking up at me and likely wondering in her own mind what was wrong that she could not even stand through the whole class.  Having just been promoted to a new level, I wondered if she was being pushed too hard, or if she really was not ready to be promoted again.  Within two weeks, she would be hospitalized in critical condition and diagnosed with AA.

I could not even walk back up the observing deck when I would go get Lauryn from ballet.  I tried once and I cried the whole time I was up there, stumbling through talking to the ballet teacher and running out of there feeling like a fool.  After that time, it made me sick to my stomach to even see the steps.  I did not even think about it, or plan it today.  But I found myself telling Naomi when she went in to class, that I would be upstairs watching.  After I said it, I did a double take and wondered what I had just said that for because I knew she would be looking for me up there.  So, I made myself go up there.  I cherish when she was on the beam and looked for me, saw me and waved with a huge smile.

It was a fantastic class for her filled with time on the bar and beam.  The instructor she had was new to us, did not know Naomi before today, and told me how incredible she did during class.  I swelled inside, half wanting to cry and to tell her all about where Naomi has been the past year, but I did not.  I do love when we see Naomi’s first teacher here in Vegas.  She looks at her and shakes her and says, “She is a walking miracle.”  My thoughts exactly.