I received a call this morning that Naomi was referred for a STAT appt with a pulmonologist.  The soonest this pulmonologist’s office was telling me they could get her in was Friday, Dec. 6th.  Clearly not being a priority, I called our dr’s referring agent back and requested another pulmonologist.  Amazingly, that same office that could not fit us in until Friday, the 6th found an opening for us at 4pm on Monday, the 2nd.  Whether that is STAT, or not, remains up for debate.  In the meantime, she is wearing her mask constantly and I am using essential oils on her that might help fungal issues without risk of side effects.  At least I feel as though I am doing something because throughout this whole process the worst thing for me personally is the feeling helpless.

Today is a day full of cooking and cleaning and family time – all the things “normal” people do.  The challenge for us is to stay focused on things one day at a time and be be grateful for this time together.  We are so thankful for the unending love and support and that we have received from you.  You have all graciously opened up your hearts to us and Naomi and we are eternally grateful.  May you and your families all have a very Happy Thanksgiving.

The results of her scans and x-rays came back to show that her abdomen healed well and her sinus issues have cleared up.  However, a new issue has formed in her lungs.  There is an 11mm mass that has developed since her last chest scan.  It might be a fungal infection or something else.  We do not know yet.  She has labs drawn today that can take up to a week to come back.  These labs would identify a fungal infection.  In the meantime, her doctor will be talking to other physicians about endoscopy to see if that would tell us what it is.

Her WBCs have gone down from 4.5 to 3.6.  Her ANC is hovering between 350 and 400.  Her RBCs are fine today because of the transfusion she received on Friday.  Her platelets crashed again.  We are currently at one hospital getting her kidney function test completed.  From here, we will head to our “home” hospital to get platelets.  We are also waiting to hear about endoscopy or whatever else might happen for her lung issue.  This is certainly something that could set the transplant schedule back.  Please pray for speed in diagnostics or a clearing up of the issue completely.  This is not what we wanted to hear today.  This path is exhausting.

Today was full of ups and downs.  Fortunately, it started with downs and then recovered.  We were due to arrive at the dr’s office between 8:30-9am.  We got stuck in traffic and arrived at 9:03.  Our original appt for the day was scheduled at 11am, but the transplant referring agent rescheduled us for first thing in the morning so we could get to the hospital on-time to begin her tests.  But she forgot to tell the receptionist, which resulted in us sitting in the waiting room until 9:50am.  We did not get out of the dr’s office until 10:45am, already late for our 10:30 check-in at the hospital for an 11am procedure. We rushed to the hospital, but did not get checked-in until 11:20am.  At some point, I went up to the admissions desk to inquire because I saw that people who came in after us were being called ahead of us. They asked if she had a procedure scheduled today in addition to waiting for a room for a transfusion.  I said that she did.  After a while of scurrying around and making calls, they had some answers for me that included being told that since I was an hour and a half late to my 11am appt that we missed it and would have to return Monday.  I clarified that I was not an hour and a half late but they failed to call me making it seem like that was the case.
With a 10am appt for Monday morning, we proceeded to our room in the PICU.  Over the next few hours, not only did we get all the rest of her exams done pretty quickly and easily, but we also got a call that we could return downstairs to take the test that we missed at 11am.  By 7pm, she was able to eat dinner and we were waiting for her blood to arrive.  We are so glad that we will be able to go home tonight after her transfusion is complete and we do not have to be back here on Monday morning!  Our next day of tests will be Tuesday.  It will be a kidney function test that spans over 5 hours with intermittent blood draws.  So, there will be a lot of down-time between blood draws during that test.
This evening, we are still awaiting the results of her CT scans and xrays  But her heart and lung test results were fantastic.  I am anxious for the results of her scans since those are the ones that have been an issue in the past since she had abdominal and sinus issues.  We need those issues to be cleared up completely before she can begin chemo.
The most recent schedule we have, which is still contingent upon all her exams getting completed and her having a clean bill of health for transplant to proceed, has us arriving at City of Hope on Dec. 13.  She will have her chemo and ATG protocol Dec. 13-17 and receive Micayah’s marrow on Dec. 18.

We learned this afternoon that Naomi will be admitted to St. Rose tomorrow (Friday) to do most of her preliminary tests to be cleared for transplant. We will initially be there on an outpatient basis but that could change if the procedures take too long. There are more than a few including CTs of her head, neck, chest, abdomen and pelvis; pulmonary function test; bone marrow test; and a few others. For some of this, she will need to be sedated which will slow the process, too. She will also be getting a red blood transfusion, I assume, unless her counts miraculously jumped since Tuesday.
We expect to be home late Friday or early Saturday morning.
I continue to be amazed at how smoothly planning has gone for everything and the blessings of ease bestowed upon us during this planning process. That is not to say it has been easy emotionally, but at least I feel the guidance of God regarding her situation.

I have to apologize for being a day behind on updates.  There is so much going on here daily and so much that has to be done for a family of 8 that updates a day after are becoming the norm.

After our trip to CA on Monday, we were due in to her doctor in Vegas on Tuesday morning for routine labs.  Dr. Rashid has been our physician here and we have had a really good experience with her.  We were happy to see that her WBC count is still climbing, ever so slowly, and her ANC count was up to the 220s.  While still severely neutropenic, she is at least having some protection during this yucky season.  Her platelets and RBCs continue to plummet though.  So, we went to St. Rose Hospital yesterday for platelets.  She will be surely getting RBCs on Friday after her next labs.  So, we are stuck at this place in which her platelet transfusions are needed every 7 days and her RBCS every 14 days.  Since her marrow can only produce so much, and it is making more WBCs, it makes sense that her RBCs and platelets are severely lacking.  This is the essence of Aplastic Anemia – the bone marrow cannot produce all her body needs.

We received full authorization for her preliminary tests today.  Dr. Rashids office asst is scheduling those for us.  I was told that we will be spending the better part of 2 or 3 days in the hospitals next week for all these tests.  Some will be done at St. Rose; others at Sunrise Children’s Hospital.

While we do have a Children’s hospital here in Vegas, we have decided to make St. Rose our hospital-home instead.  Being close to our home, it is convenient and I have really appreciated our time at St. Rose and will miss the nurses and staff there who we have come to know on a first name basis.  It is nice to walk into the PICU and have everyone there know Naomi and her special circumstances.  Many of the nurses there have taken time to really get to know her and treat her with such dignity and respect.  I appreciate that they see her as an individual and take her preferences into consideration.  It is also a friendly feel as we walk out the door after a transfusion and there is a chorus of “good-byes” as we leave the floor.  It is also really nice that we have the chapel, including the chaplain and Priest both on staff who have visited Naomi repeatedly.  We have attended Mass there multiple times, too.

In summary, I was a bit concerned that things might stall or get slowed down by authorizations and scheduling.  I am relieved to hear that things progress on schedule.  The next few weeks will be a whirlwind and we appreciate all your support.

Today was our trip to City of Hope to meet with Dr. Pawlowska, Naomi’s new doctor who is the Director of Bone marrow transplant (BMT) at City of Hope (COH). Meeting in a conference room, rather than an examining room, was a welcome change. We were joined by Naomi’s Nurse coordinator and Social worker. Aaron and I both left feeling confident in her team and the path that we are on.
Dr. Pawlowska gave a us a good mix of risks and optimism.  Typically, it would take a large dose of chemo to wipe out the patient’s bone marrow, which may also make her permanently infertile.  A newer protocol that has been effective for Aplastic Anemia sufferers is to use a low dose of chemo with an overlapping ATG protocol – this helps to reduce the chances of her becoming infertile.  The combination of this new protocol and a sibling donor who is a perfect match means that Naomi has a really good chance for full recovery.  This protocol has been very effective and has a good history of engrafting success.  She also explained that the current supportive medicine available to those who are going through a transplant means that her side effects will be managed well.  Typically, the side effects were something that has been a difficult issue in the past for those who have gone through transplants.
We expect to be in the hospital for 6-8 weeks and in CA for over 100 days. Ideally, they will release her from inpatient care and we will visit clinic a few times a week while staying in CA for about a total of 110 days. Dr. Pawlowska said that we might be able to leave early, if doing well, but typically they like to keep transplant patients close to the hospital up to Day 100 post-transplant.
We are anxious to move ahead and have a tentative time-frame that has Naomi and I arriving at COH to check-in around the 10th of December.  This would mean that she would be going through her conditioning regimen on approx. Dec 11-19 and have a transplant date of Dec 20.
Micayah’s procedure will all be as an outpatient.  On the day of the transplant, he will go into surgery and be completely anesthetized while his marrow is removed from both hips simultaneously.  After the surgery, he will recover at the hospital and then be released to go home the same day.  Before he is fully recovered, and possibly even awake, Naomi will already be receiving his marrow through her catheter.
We will report back to COH the first week of December for one last meeting with her team to cement the dates.  Between now and then, there are many tests to be completed and prayers to be said.  We also have the logistics of housing to figure out since we cannot stay at the Village on Campus because no children under the age of 18 are permitted there unless that child is a patient.

One of our biggest issues since her diagnosis has been her inability to tolerate her medicine called Cyclosporine.  This med is critical to her immune-suppression protocol because it stops her t-cells from attacking her bone marrow (which is how her bone marrow came to the point of producing at less than 5% what it was supposed to be producing).  By inability to tolerate, I mean she cried as soon as saw the box of medicine being pulled out of the cabinet; she screamed and kicked when I got close to her; she begged and pleaded me to not give it to her; she gagged as soon as it hit her mouth; she threw it up more times than I cared to count – mostly late at night when we were exhausted, or early in the morning when I was trying to get back to bed.

We tried changing the time of day she got it, moved it before meals, after meals, the middle of the night, right before bed, first thing in the morning, etc.  NOTHING has worked and we were all in tears most day over what we have coined “psycho-sporine” because it was making us all NUTS!

Due to her being so small and having such a low dose, she had to stay on the liquid solution and could not change to capsules.  She even offered to endure a second injection each day if she could just not have to take the liquid solution.  But, alas, the liquid was all we had for her….

So, Micayah, the hero he is, came up with a perfect solution – empty gelcaps that we fill and let her swallow.  So, it took 4 empty gelcaps to use up her nightly dose of cyclosporine and……  I am proud to announce that we have gone 3 days with no vomits, screams, or kicks at psycho-time! She can take it right after a meal, or anytime really.  The issue was the taste hitting the back of her throat and triggering that gag reflex.  It has been such a relief to have those sessions tamed for the lioness.

Back when Naomi was first diagnosed and we knew that she would likely need a transplant, the other children and Aaron and I were all discussing the transplant process.  Micayah mentioned that he wanted to be the donor so that no one else had to go through the donor process.  So, it is with amazement and awe to learn that Micayah is indeed Naomi’s PERFECT match!

While waiting in the doctor’s office waiting for results, I asked the nurse if there were any.  She said that she believed the results had come back.  Whether or not she knew the results, I do not know, but her response left me very deflated, and feeling as though there was no match.

When the nurse left the room, Naomi and I looked at each other.  I sighed.  She said, “There is a match.  I just KNOW there HAS to be!”

When the doctor walked in the room, she said “it looks like your oldest has the honor.”

I said, “There is a match?”

She said, “Yes.  Micayah is a 10 out of 10 match.”  She was so calm.  So pulled together.  So dignified.

I wanted to jump up and down and scream and run through the building shouting to anyone who would listen that Naomi had a match.  And not just a match, but a SIBLING match, and a PERFECT one at that!

Instead of screaming, I texted Aaron, stood up next to the doctor and looked over the results with her.  Caitriona and Niamh are a perfect match to each other.  Lauryn and Malakye are partial matches to each other.  But the one that really matters is that Micayah and Naomi are a PERFECT match!

I started out the day running around to the pharmacies that had her orders.  It is always a relief when I get there and the order is ready and complete for me.  With meds in hand, I went back to the hospital to wait for us to be discharged.  We played at the playroom for a while and packed.  It was later than we expected, but we were discharged and came home!  We do not have to report to the clinic until Thursday!  That means we have two full days AT HOME!

Now, we are waiting for the home health nurse to come help me set up her pump for her IVs at home.  I will need to administer three IVs each day.  Her medications include 11 oral doses of medicine, 3 IVs, and a syringe.  I have put together a spreadsheet of times/medicines and a checklist.  This week will consume of following a schedule like clockwork and resting whenever possible.  I am also going to work on ironing out the kinks with homeschooling the children through the virtual classroom that I set up.  That way, when I leave for CA, we have worked with the classroom while here at home and do not have any technical issues.

I cannot wait to sleep in my bed with my entire family under one roof.  It is amazing how the simplest things are the largest Blessings.  Like all watching the same tv, seeing each other in a way that we can actually touch and not through a facetime screen, sitting at the same table for a meal, and seeing the smiles on my kids faces as they play and laugh together.  Naomi and Cait are napping right now while the older three children are at Irish dance class and Niamh is with Aaron.  Although my to do list is long, I am enjoying being at HOME!

Oh, and her labs today were much of the same as recently…. some better than yesterday and some worst.  Since so little of her bone marrow is functioning, her body is making what it needs.  Today, her marrow made a lot of WBCs, but RBCs suffered.  So, she is very tired today.  But she was not too tired to play in the backyard when she got home from the hospital.  🙂

Also, we still have not heard the results of the donor tests.  I will be sure to post here as soon as we know!

Finally, Aaron and I both want to thank you for the donations of funds, gifts, calls/texts, prayers and sincere concern for our lioness.  It is truly amazing how many of you have reached out and continue to follow her progress.  The first deposit of donations made it to our account today, just in time for her release today and meds she needed to be released.  It was truly a Blessing.  I will continue to update here as things progress, and hopefully relax a little bit.

As for prayer need, we need Naomi to eat and drink better.  Many of her meds cause her to be nauseous and she is afraid to eat for fear of vomiting.  We are really needing her to not get dehydrated or lose nutrients.  So, it is so important that her appetite return at least a little bit.  Right now, it is a challenge at most meals to get her to even take a bite.  Now that we are home, I intend to use more essential oils to help stimulate appetite and can certainly feed her whatever she will eat (within limits of what her GI doctors will allow).  But the biggest issue is her fear of vomiting.  Unfortunately, it is part of the meds which are part of this disease. 😦

Sunday started as a very sleepy day. Her platelets were low and ANC 0. So, she was extremely tired. After a platelet transfusion, she came home for the evening. I posted a photo of all the kids together that I took while we were home. We ate a meal together and were very happy that she ate her entire serving of spaghetti. She pretty much refuses to eat hospital food which has caused some issues of nagging from some nurses. We have been bringing meals in from home whenever possible.
Tonight, we are back for more meds and to sleep.  In the morning, I will run to the pharmacy at a nearby hospital and grab the rest of her meds. Then, they will release her to go home!
We are all looking forward to sleeping under the same roof tomorrow…… We will treasure every moment of being home knowing that it is temporary until we go to transplant. Tomorrow might also reveal if we have a donor match…… Oh, the anticipation.

Naomi walked, no skipped, off the pediatrics floor at 5pm this evening. We went home and she took a shower and got ready for Mass. We had a wonderful evening at Mass and then had a cupcake and apple cider celebration afterward with friends. Naomi was so happy to be out of the hospital and with her family and friends.
It was a day of cool gifts. Tonight I am sitting here making beads on her bead machine while being hit in the face by a foam ball that comes out of a fish’s mouth.
At this point, all of her meds will be ready on Monday morning. So I am expecting that she will be released Monday morning.

The nutrient bag is done! She is free to walk around the room as she wishes. Good thing, too, because last night that pole was really slowing her down!

Yesterday, I spent most the day trying to put things together so that she could come home today or tomorrow. I am running into some road blocks because I cannot get one of her medicines locally and need to wait until maybe TUESDAY to have it shipped from the east coast. There is ONE more specialty pharmacy that opens in 5 minutes that I will call and see if I can get it today.

In the meantime, Naomi has a pass to leave the hospital for up to SIX HOURS each day and will be going to Mass with us tonight! So, friends, locally, if you are going to Mass, you will see her there! 🙂

We are all VERY excited. I know she is thrilled to be able to ride in a car again.

Diet restrictions were lifted this morning! Her diet is a modified diet, as per instructions of the surgeon. She is to eat a low residue diet to slow down digestion and minimize work in the large intestine. She has no appetite yet since the bag of nutrients is still going into her vein. But that bag order ends tonight and then she will want to eat. We will try to get her to eat sooner, too because I am pushing for release sometime tomorrow.  But so much has happen before then with prescriptions and ordering her hard-to-find medicines. So, it could be Sunday before we can go home. I hope it being a Friday does not make it more difficult…..

Also great news, her ANC count is over 100 today. Her WBCs went up to 3.6 and her neutrophils are at 3%. We have a lot to be thankful for this morning. 🙂

Naomi and I got a change of scenery yesterday afternoon and headed outside into the sunshine. We enjoyed about an hour in the Healing Garden. We rested on a blanket while laughing and talking. Once the sun moved behind the building, it was too cool to stay longer though. We had about an hour there.
While walking back to our room, we decided to stop in the chapel and pray a rosary. We snuggled in the first row of seats and soaked in the peace of the chapel. With us being the only ones in there, I imagined all of Christ’s focus on us and especially her healing. I took a minute to be thankful for each person praying for Naomi, and us, and anyone who has been supportive in the smallest way or in many ways. Aaron and I are grateful and humbled by the encouragement, prayers and support from so many of you. We cannot thank you enough.
Last night, Aaron stopped over with all of the children and it was fun to see them all bustling about together. The oldest four jumped right back in together, joking, talking and sharing halloween loot and their thoughts- just like the best friends they are. Having them all together makes me feel complete, even if I do have to chase Caitriona around the hospital while she looks for “babies” and talks about her shoes.
We are still awaiting lab results today. ATG+32. November, a new month. All Saints Day and Mass in the chapel today –  first Mass as a family in 4 weeks! No matter what the labs say, we will make it a good day.