Just a quick update to let you know that we received an email tonight that Naomi’s bilirubin and ALS and ALT are all improving and we can look at admitting her in early January after all.  That is wonderful news as we head into the weekend.  Thank you for all the continued prayers and positive thoughts for Naomi!

In the menu options above, you will now see a Photo Gallery.  You can click on it to see the photos that have been transferred.

When Naomi was first hospitalized, Dr. Rashid and Dr. Walsh were colleagues at CCCN, but before long, Dr. Walsh left CCCN for Children’s Specialty Center.  Now, Dr. Rashid is also leaving CCCN for Children’s Specialty ad we are going with her.  However, Dr. Rashid will not be at Children’s Specialty until Jan. 6, so we are having appointments with Dr. Walsh during the interim.

Due to the influx on new patients, Naomi’s appt. ran quite long on Thursday.  Scheduled at 3pm, we arrived (as instructed) at 2:30pm to complete paperwork.  We did not get called from the waiting room until 4:30pm.  Then, we waited in the exam room for 30 minutes.  Yes, it was an incredibly long and frustrating wait.  I will be sure to bring plenty of snacks and knitting to future appointments.  I was thankful for the Tetris game on my iphone…. and the Time magazine article about Pope Francis that I had the opportunity to read while waiting.

Dr. Walsh rewarded our wait with orders to proceed with pre-transplant testing.  The orders were for blood tests  with a total of 5-6 tubes being drawn.  Also, orders had been issued from COH for a repeat of her chest xray and CT due to the abnormal scans back in November – the ones that led to her broncoscopy.

Her CBC showed that her ANC is holding at 1300.  Her RBCs are dwindling, but did not require a red blood transfusion.  Her platelets, as we suspected, were at the bottom.  We assumed as much on Christmas Day because she had quite a bruise on her leg from her injection of Neupogen.  Poor girl.

Since we had that run-in with the flu a week ago, I have been giving her injections occasionally to help her immune system.  The trade-off is the black and blue marks and rapid drop in her platelet levels.  The other trade-off is the screaming, kicking and abuse that I have to endure every time I have to give her an injection.  Picture injecting a lioness with Neupogen and that is what I deal with around here!

Having been out much longer than anticipated, we were starving, but the hospital was ready for us.  So, I made a quick call to Aaron who prepared our dinner.  Scared by that false positive of hepatitis A, we are trying to avoid hospital food, so we stopped by at home and picked up our homemade takeout meal of hot dogs and salad and then rushed to the hospital.  There, we ate quickly and I gave Naomi her 6pm meds late…. at 7pm.  I do not typically give her meds WITH food…. but we were late for everything and starving…..

Upon admittance at the hospital, the lab typed and match her blood to order her platelets.  Then, the radiology dept. arrived to take us for her xray and ct scan.  All the rushing around on top of a late meal WITH meds resulted in her vomiting her meds (and dinner).  When her scans were complete and she was back in her room, I ran home for a change of clothes and a second meal for her.  After all, she was hungry after throwing up her dinner.

I returned to the hospital just as her platelets had arrived from the blood bank.  She had them infused while I sipped a mocha coffee and knitted.  She attempted to watch the Nancy Drew movie for the 196th time but the hospital was requiring that she watch the Fall Risk Movie for the 379th time.  Not wanting to watch the Fall Risk movie again, she opted to turn the tv off and play on my iPad instead.  Before going home, we endured a bandage change and then were home just a little after midnight.  I think when this is all over that I will be able to write a few books…. 101 Things to Do On Outpatient Day might be one.  I am thinking a comic book style with Malakye as my illustrator might be good!

Now, we have 4 days at home.

On Christmas Eve and the day before, we put together a pretty good Christmas plan, including a tree, a few gifts for each child and our favorites meals: shepherd’s pie for Christmas Eve and Ham and fixings for Christmas Day. We got a tree from a lot that was closing for the low price of $10. The tag said $55! I hung the lights myself (first time in years since Aaron always does it, but he was working) and the kids decorated. Some might say that it is a little leaning to one side, and the decorations are all cluttered on the front, but we all think it is perfect. So perfect, in fact, that the children had a sleepover in the living room around it.

We are doing mostly stocking stuffers with things I know the children needed or could use for homeschool, and one Catholic gift for each to open. All of this would not not have been possible without the generous gifts we have received. I am thrilled to have been able to spend less than $300 for everything for Christmas. We have also kept cards and packages from family over the past few days to give us more to open on Christmas Day. The kids are very excited!

It was Naomi’s one wish to have a tree and she has been so thankful since I brought it home as a surprise. The next few days will continue to be a time of togetherness for our family. She really is a lioness who loves to be part of her family unit. She thrives on being with the other children. Our day will surely involve a dance performance by the children who celebrate each holiday by putting on a show for us. Other than Thursday, when Naomi has a doctor’s appointment and will likely need a transfusion, we will be home together throughout the weekend playing games, eating, and resting.

We are so thankful for the love and generosity of Naomi’s Pride. Each time things appear disappointing for us, your comments, cards and support arrive both here and in our real mailbox, and your love and prayers pick us up and allow us to keep pushing ahead. Merry Christmas, Friends!

This morning was full of information, mostly frustrating information.  I hesitate to post it here because I do not want to be the Grinch and share my frustrations with others, but I know that there are many of you looking for updates.  So, here it is…

Friday’s blood tests came back today and her bilirubin and liver enzyme levels continue to drop some.

Also, her Hepatitis A and B tests were repeated on Friday.  Both were NEGATIVE.  She does NOT have Hepatitis.  Yes, that IS fantastic news, but…..

What she does have is an IV antibiotic that is known for causing liver issues and symptoms of hepatitis and “clinical hepatitis.”  Aaron, being the investigator he is, found this link today and we passed it on to her nurses and doctors.  http://livertox.nih.gov/Meropenem.htm  Fortunately, she is being taken off that antibiotic today and placed on another, but honestly, that was planned days ago.  Her doctor here in Vegas talked of taking her off that med weeks ago but she was staying infection-free on it, so we kept her on it since the transplant was so close.  The irony – the prescription that caused her high liver enzymes and bilirubin was the medicine we were crediting for keeping her well…..

Because her risk of illness/infection is so high due to the nature of Aplastic Anemia, she has to stay on an antibiotic.  Her new antibiotic will not be given through her IV catheter.  This change will hopefully result in a more rapid drop in her bilirubin and liver enzyme levels.

While talking to the nurse coordinator in CA at COH today, she informed me of a late Jan admitting date and an end of Jan transplant date.  Last week, I had originally been told the transplant would be delayed 2-4 weeks.  The dates she gave me today give us a 5-6 week delay.  I am totally less than thrilled.  In fact, I will be making some calls on Thursday, you know, when everyone at COH returns from their Christmas break, to push the issue to try to get the transplant moved sooner.  That late January date was scheduled when they believed she had hepatitis.  Now that we know she doesn’t have Hepatitis, why risk her getting sick by delaying that long?  I need someone to convince me that such a delay is in her best interest.

I am thankful that we will all be together for Christmas.  I was able to sneak off to buy some stocking stuffers that everyone will love and be surprised by.  The stocking will be hung on the steps with care and the kids will think that Santa was here, again.  🙂

Naomi seems to be in good spirits, unless it is time for her injection. (We started the injection again because it helps boost her immune system to protect against illness.)  She has a good amount of energy and dances and plays her way through the days.  It is unnerving how “normal” giving your child a IV every 8 hours can start to seem to her.  When I give her the morning dose, she smiles at me as I wake her while attaching it.  I told her about the new transplant date and she did roll her eyes and sigh when I told her that the transplant is another 4 weeks off.  She is most anxious to become transfusion-free.  Being transfusion-free will lead to getting her catheter out of her chest and allow her to start doing gymnastics at home again.  Aaron and I helped her wash her hair in the bathtub last week and we all laughed when we were able to wash her hair by having her do a back-bend in the water.  She told me that she dreams of doing walkovers.  I dream of watching her do them, again.

We appreciate all your support and encouragement.  Our mailboxes are filled with greeting cards and we like to read back through the guestbook posts here.  It helps us to not feel alone through this difficult journey.  We wish you all a Merry Christmas!

You might remember that I mentioned illness making its way through the house and some kids not feeling well. Throughout the week, everyone in the family came down with a virus. It kept a few people in bed all day long. We kept Naomi in her room much of the time and a mask on her face as much as possible. She received multiple essential oil massages and stayed hydrated. But, as her doctor in CA indicated – it was likely that Naomi was already exposed – and the inevitable happened. On Friday morning, she definitely had the same flu everyone else had gotten. I was in a panic when she began to vomit. She never ran a fever though and recovered from the vomiting fairly quickly. She was even able to eat lunch and some dinner later in the day.

I called her doctor at 5:45am (poor woman) and she confirmed that I should just bring her in for her scheduled outpatient appt later in the morning. There we learned that her ANC count SOARED to 1300 and her body did indeed respond to the virus and was fighting it. Her neutrophil count was doing exactly what it was supposed during an illness. Thank God.

Also, while at the appt, her doctor showed me the different lab reports that indicated she was indeed exposed to Hep A. Some of her liver enzyme levels were four times higher than normal range. The good news is that they began to fall earlier this week. Looking at Naomi, she has no yellowing of the eyes or skin, so it is likely that Friday’s blood tests will also show a further reduction in those levels, but we will not know that until Monday. In hindsight, her delay was a really good thing. Had we gone to CA yesterday, if she had vomited there today, the chemo would have been delayed anyway. And seeing the results of the labs for myself, I can definitely see why it was not safe to begin her chemo/transplant this week.

We now get to enjoy an entire week at home, mostly together. Aaron is working part time. Naomi does not go back for a clinic appt for 6 days now. This will be our longest stretch without a dr. appt. since September!

Today is an at-home day for everyone.  It is amazing how slowly time can seem to pass.  We do not know for sure at what point Naomi will be clear to proceed to transplant.  They are tracking three different levels in her blood – her bilirubin is just one of them.  The good news is that yesterday’s blood tests showed a fairly significant reduction in all three of these levels from last week’s tests.  We are all anxious to see what tomorrow’s results show.

In the meantime, we are keeping our bags packed and Naomi has enjoyed a day in her room.  She has watched Netflix, played games and gotten breakfast and lunch in bed.  It is the first day in a really long time that she has been able to just relax in her room and enjoy herself.  I am doing laundry, scrubbing floors and tubs and showers and relocating more blog posts.  We have decided to be thankful for the extra days at home and trust that the next step will open for us sooner rather than later, but all in Good time….

We were informed today that due to increased bilirubin levels and the Hepatitis lab tests being positive, the transplant has, again, been delayed.  It was very frustrating news since we are literally packed and ready to go.  We were due to leave tomorrow and have chemo begin on Friday.  However, what this gives us is Christmas at home, New Year’s at home and the opportunity for us to save up some more funds to get us through the transplant.

She has no symptoms of Hep A except slight yellowing and increased bilirubin.  But those things could also be attributed to the medicines that she is on since what they are is a sign of is her liver being overloaded.  What this transplant postponement has done was motivate Naomi to drink more fluids.  Personally, I am not convinced that this Hep A test is really accurate.  The Hep B test was not accurate, so, I am sure you can understand my suspicion.  I do understand that the Hep core antibody test was what was positive and perhaps that positive result was pointing to either Hep B or Hep A.  For sure, Hep A is easier to deal with than Hep B, and we are thankful for the negative Hep B test results.  But this is most frustrating considering her severely neutropenic state and the risk of infection for her due to her low white blood cell counts.

The transplant delay is for an unknown amount of time.  Best case scenario is 2 weeks.  The infectious diseases doctor indicated that 3-4 more weeks was more realistic.  We need to wait for her bilirubin levels to start dropping so that we know she is recovering.

Until we leave for transplant, we will be as secluded as we can be.

I expected the phone to be ringing this morning about the blood tests, but have been surprised instead by a quiet day.  As we all sit around wearing face masks and I shoo kids to sanitize hands regularly, we have enjoyed a fairly uneventful day at home.  While Caitriona has slept on my lap most of the day, I have switched over the website some more.  It has been so nice to go back through the old posts and see and feel your support and encouragement, again.  I have realized a few things…

1) There are so many of you that I have never met or even known before Naomi’s diagnosis.

2) Uncle Ross comments more than anyone else!

3) During the hardest times, you commented the most.  As I felt a rise of emotions on certain posts, remembering how difficult that day and circumstance was, your comments and replies of encouragement were all right there.

4) I originally started this to cut down on the amount of email and text messages that I was receiving.  I am very glad that I have this written account of the past few weeks.

5) I need to keep my posts shorter!

So, with that said, I must tell you that Naomi’s owl hat has been found, we are mostly packed, and this all still seems so unreal.  I cannot believe that I am about to leave home for a minimum of 100 days to accompany my daughter to another state and be with her through a life-saving medical procedure.  It makes all the trials I have had in my life up to this point seem so small and insignificant.  Yet, there is a peace in my heart about it all…. because I know there is no other choice.  I have been happy to reduce the workload for all my kids regarding schoolwork this week.  They have played with their Christmas gifts and each other instead.  The boys have been playing baseball and football in the backyard.  The girls have totally redecorated the dollhouse a million times.  Niamh is loving her LeapPad, even if the rest of us are throwing the headphones at her so we do not have to hear the music repeatedly!

We were originally informed that her primary hepatitis tests were all negative. That was for A, B and C. But on 12/6, she had a second hepatitis test sample done and it came back positive for Hep B.  Being a form of infection spread through blood and other body fluids, the only way she would have gotten exposed would have been through a transfusion, which continues to be a risk as long as she remains transfusion-dependent.  Her physicians consulted with the Infectious Diseases physician at COH and he suggested some further testing.  Those tests were done last Thursday and we are happy to report that all those further tests came back negative for Hep B. False positives DO happen!  However, now, today along with those negative Hep B results, her Hep A results showed up positive. She has no symptoms of food poisoning or food-borne illness whatsoever, so I am banking on another false positive.  But we continue to wait for more information from COH.

A little behind-the-scenes information….. You may have seen on Naomi’s story page that I have begun to transfer her website over to a wordpress blog. I find the wordpress blog easier to publish and post photos. I also think it will be easier to convert her story to a book at the end of our journey, as I can have private notes for myself in addition to the public ones that you see, if I do decide to do that. It is a much friendlier format for authors and photographers. I am sure you have recognized that photos on here have dwindled to nothing, mostly because it took so long to format them once I uploaded them. It has not been very user friendly. You will also be able to subscribe for email notification when I update the page and will likely find it more reader-friendly. I hope that is so.

I hesitated to do this because of all the comments and love that are already here. So, I am working on transferring everything over there, including your words of encouragement and comments. I had wanted to have this accomplished by time we leave for City of Hope, but packing has taken considerably longer than I anticipated. I feel like I am moving, again!  I never have been one to pack lightly…. Anyway, her new blog will be at www.prideofnaomi.wordpress.com. And I will be double-posting this over there and begin to put future updates over there while working on transferring the older posts from here. Had I known this would be a daily journal, I probably would have blogged at wordpress from the start, but I originally hoped that we were looking at weekly or maybe monthly doctor visits, not a life-changing illness resulting in nearly daily information. Ok, rambling over!

The lioness continues to be positive and optimistic. She has started to pack her things, including her hats and knows that chemo results in hair loss. We have been discussing whether or not to shave her head before it starts to fall out or wait. I must admit that I get choked up thinking of those braids being gone. But her doctors assure me that it will all come back very quickly because of the medicine she will be on that promote hair growth. Fortunately, Naomi has always loved hats. She has some very cute ones that I made her or others sent her as gifts. Sadly, her favorite hat, an owl one that I made for her, remains missing. I think we will all be digging for it tomorrow. Good thing there are so many eyes and hands to search for it!

We did not make it through the weekend at home. On Saturday morning, Naomi had petechia developing on her face and her arms and legs. After a call to the doctor, it was arranged for us to report to St. Rose for a transfusion. The bad news: we lost our Saturday. The good news: We will not be in the hospital on Malakye’s birthday on Monday.

It was a fairly uneventful day otherwise. We are praying for good health. Some of the kids have sniffles. A call to City of Hope reassured us that we are doing all we can and that Naomi keeping a mask on and us continuing scrupulous hand washing and sanitizing is all we can continue to do. We are so close to transplant and we have already been delayed…. I was afraid of this happening.

As lab results continue to trickle in, things continue to look decent.  For the past week, there have been some discrepancies in her serology reports which have everyone scratching their heads a bit, I think.  These discrepancies have resulted in even more testing being required before we head into transplant week.  But as the results come back for what we hope is this last round of testing, the results continue to come back with positive results.

The bone marrow biopsy last week came back with minimal improvement in marrow cellularity. The doctor said that there was some slight improvement in myeloid development which can be attributed to her neupogen injections.  Her true response to the ATG treatment has been none to very little confirming the need for the transplant.

Her CBC results today guided us back to St. Rose where we spent the day waiting for her blood transfusions between running home and doing some laundry.  We look forward to a weekend of peace ahead and continue to pray for health.  We are so close to transplant.  Hopefully today was the last required blood tests.

I received notification today that insurance has fully approved the transplant and all paperwork is complete.  I cannot say enough good things about Aetna and our medical insurance throughout the past three months.  We were assigned a case manager for Naomi’s case immediately.  Both Charleen and now the transplant manager, Valerie, have been fantastic with approvals and preapprovals and keeping me informed.  It has been such a relief.

Since being home and opening our mail, we have found so many nice gifts!  A dear friend of mine made Naomi Broviac shirts which make it easy for her to stay covered but still easily access her catheter.  They are personalized and will be very much loved while we stay at COH for her transplant.

Natalie and Nicole, and the Casey family, your gifts were so special.  I miss seeing Naomi at gymnastics and on the bars, especially.  The bars were her specialty and she “rang the bell” there often.  So, your gift to her was heart-touching.  She treasures your medals and we look forward to a day, hopefully not too far off, that we can hug you!

I must end here before my keyboard is soaked with tears.  We are so blessed to have so many good and caring people supporting us.  Thank you.

This evening there was quite a surprise waiting for us in our living room.  Some generous elves stopped by here to give our family Christmas gifts.  It was like a Hallmark commercial: sports equipment for the boys, a dollhouse and accessories for Lauryn and Naomi, a LeapPad for Niamh, and Calico Critters and a Cottage for Caitriona.  They were perfect gifts for each of the children.  There was also a very generous monetary gift which will be a huge assistance to us during Naomi’s upcoming transplant.  We are extremely Blessed to have such fantastic co-workers and friends. After the past few days, it was exactly what we needed – a diversion from disappointment and frustrations and medical bills.  With such kindness, it is easier to have hope and optimism this evening.

Naomi’s procedures have now been postponed until later in December with her actual transplant taking place after Christmas.  We will still be apart on Christmas Day as she is supposed to be admitted by then for her conditioning regimen.  We are learning that nothing is certain when planning these procedures.  We have hit some obstacles that were unexpected – some tests were negative in Vegas, and positive in California…. or the other way around.  The poor girl has had so much blood drawn this past week that it is amazing she has any energy remaining.  All of these tests are for the better good – to help determine which chemo she will be getting and which meds will be necessary after she receives Micayah’s marrow and we wait for engraftment.

The positive side of this delay is that we are home and mostly together, with Aaron working short weeks.  Also, it gives the children time to play with their new gifts!  We are hopeful that our time at City of Hope is done until we have to return for her admission, giving us over a week at home together.  Our largest prayer need continues to be her health – that she will remain infection-free.

Just a reminder than any contribution made through the caringbridge site will NOT go directly to Naomi or her medical bills.  It only supports the caringbridge website.
Assistance for Naomi can be sent directly to Kristy and Aaron at mommysgems@gmail.com through Paypal or throughwww.gofundme.com/naomiwilson

We received information today that was very disappointing.

There is a type of Aplastic Anemia called Fanconi’s that requires a special chemotherapy protocol. For best results, every transplant patient must be tested for Fanconi’s Anemia in order to have the right chemo schedule. Do you see where we are going here?

It is a two part test that first requires the sample cells to grow and then requires measuring the telomeres within the cell. The size of the telomere helps determine the presence of Fanconi’s anemia.

Naomi had this test done on two occasions, but the specimen failed to grow enough cells for the second part of the test to be performed. The lab never told us this. No one ever called to find out these results until today when we asked the dr in Vegas for them.

This was all determined too late in the day on Friday to do anything about it. The lab does not perform these tests on weekends. So we will wait until City of Hope’s labs open at 7am Monday to perform this test. In Vegas when this test was done, it had to be shipped to another city for processing. That could have contributed to the test failing since her blood cells were so weak. Here at COH, they will draw the blood and begin the test immediately, leaving no time for cells to die.

Rather than the transplant happen on the 18th, she will probably begin chemo around that date now. Not too much of a delay, but some.

Her final bone marrow biopsy and aspiration was completed today and she had some really intense reactions to the meds again. We are adding more meds to the list of allergy meds to be avoided. Her reaction to Benadryl made her nasty, aggressive and appear to have superhuman strength. I had to hold both her hands firmly so she did not rip out her catheter. It took 3 medical professionals (a nurse, doctor and nurse practitioner) to manage her until full sedation took effect. Her blood pressure took a really long time to stabilize afterward. The funny part is that when she was coming out of sedation she heard a baby crying down the hall and picked up her baby doll and talked to it like it was real asking if it wanted milky and if she could snuggle her. It ended up she thought the crying baby was her baby doll and was Caitriona and she was trying to comfort her. Love that girl! Also, the hot air balloons painted on the wall made her laugh because she said the meds made it look like they were floating around the room. We all thought that was funny. She said that it was kind of fun to see how many earrings could hang on my ears, too.  At one point, it looked like each ear had 13 earrings.