Aaron and the children arrived last night and we are all together again.  Naomi has been asleep for about 12 hours now and continues to get the rest her body needs to help her cells grow.  Interestingly, she requested that I play the Pandora track of Instrumental Christmas Music for her to sleep to last night.  How fitting that her numbers climb to Christmas music! Today was like Christmas again, and the gift far better than any gift ever asked for or received.

Her labs today are VERY exciting.  Her WBCs increased from 0.1 (100) to 0.2 (200).  Also, she has an ANC (Absolute Neutrophil Count) of 0.1 (100)!  The transplant is definitely working!

It is almost as though she waited for Micayah, or Daddy, or maybe all of us to be together.  We are so thankful for the continued prayers, masses of devotion to her and our family, and the generous outpouring of support we continue to receive.  We are definitely celebrating today!

Lauryn spent all day with Naomi today.  It was great for both of them.  They did crafts, laughed, played games, laughed, and danced (and laughed).  At one point, Naomi tripped on her cape and fell… talk about my heart dropping to the floor.  I had the nurse remove her bandage to be sure it did not pull.  Fortunately, her bandage changes do not make her cry anymore because these are gentler to remove.  Even more fortunate was that the line was well-secured and did not pull at all.

The Dr. gave a good assessment for Naomi’s progress.  We discussed the little signs that we see that are encouraging hints that we are headed towards engraftment.  Yesterday, her CBC differential said “rare monocyte seen on scan.”  Today, it said “rare monocyteS seen on scan.”  The Dr. confirmed that is a good sign and that with only 100 WBCs, there are not enough yet to do an accurate differential.  But within a few days, there should be! Also, her other counts are falling less rapidly and starting to hold steady more, although she did need a transfusion today.  This is all very exciting. 

Naomi continues to not run fevers, or have any viruses show up in her samples.  We are thankful for that and ask you to keep praying to that end.  The parameters required for her to be discharged are that 1) she is fully engrafted, 2) taking meds on her own, and 3) infection-free.

This evening, the tubes to her med pumps were changed.  While the nurse took care of that, Naomi was FREE.  I remember being a bit terrified at how she might react if she lost some of her balance, or became more uncoordinated through the transplant process.  We were warned that the chemo and isolation could effect her balance and coordination skills.  I am happy to provide the following video to demonstrate that she still has her balance and her feet still are as coordinated and fast as ever…. she is unbelievably strong and brave.  Thank God. 

It was perhaps our most difficult day in terms of psychological and emotional issues.  Naomi was just not herself.  She was alternating between sad and angry, and was quite restless.  When I called from the hotel for her AM report, I was told that she has been crying, yelling at nurses and very agitated around 5:30am. I pointed out that there is often a round of vitals, including waking her to stand on the scale, around that time.  When I arrived at the hospital about an hour later, the day nurse confirmed that her vitals and weight had been charted at 5:11am and her agitation/restlessness at 5:30am.  I pointed out the obvious correlation.  Within an hour, as per my request, the doctor ordered that Naomi no longer be woken before 8am to have vitals and weight done.

Having rushed in here this morning because the nurses made it seem like she was spontaneously yelling and crying in her sleep, I arrived just as she was waking.  It was a great day for time together since Caitriona took a marathon nap for Nanny today which allowed me to stay with Naomi most of the day.  This evening I am staying with her, too, because the same nurse as last night is here and I want to see what happens and if Naomi wakes again like she did last night.

I had a good conversation with Naomi’s dr today and am really looking forward to the weekend and early next week.  It should not be too much longer before we start to see some real progress.  Although today was a bit disappointing for us as we were geared up to start seeing an increase in numbers, we were encouraged.  I was told that after Day +100, Naomi is encouraged to try to return to a life as normal as before she was diagnosed – including church, gymnastics and all.  That is very exciting.  In my mind, I had her in seclusion for months to come, even upon returning home.  But it looks like life will be able to return to “normal” sooner than I imagined.  I realize that we are all very changed and normal will look different for us, but it is exciting to think that she can feel normal again sooner rather than later.

So, that is what we have to look forward to in the near future.  But for now, we push through the chemo effects, the emotional transitions involved with a transplant, and of course this unending isolation for Naomi.  I can close my eyes and see her walking in the gardens here; feeding the fish at the pond; swinging at the park.  It will be like her firsts all over again… only she will remember all these experiences.

It was craft day today. We made flowers to decorate Naomi’s window. There is one flower for each day since the transplant.

We also put up some valentine’s window decorations although we are hoping to not be inpatients on Feb 14!

Naomi was in VERY good spirits and so silly and active. Her labs today look like there is a trend towards less of a dip each day, perhaps? We are all so anxious to see some progress on her labs.

It was quite a challenge for her to eat today. She did not have any appetite. But when the dr did rounds, the dr stressed how important protein intake is right now. Fortunately, I got Naomi some Balance bars from Trader Joes that are 15g of protein in a small bar – and Naomi eats them. The dr also ordered high protein shakes for her. So, I was forceful with Naomi and kept reminding her to drink it by saying it was good medicine and she needed to drink it.

Her one food request for the day was clam chowder. I earn the World’s Worst Mom Award because I forgot it at the hotel last night when I went back to her. What, with all the stuffed animals that needed to come here, and the new list of animals being admitted there, and the focus being on looking for her wonder light, it is easy to see how I was distracted and forgetful! So, if anyone has seen her favorite wonder light that puts stars on the ceiling, please let me know. In the meantime, I think I will be tearing the van apart today and having Aaron double check at home to see if it was never here at all. She had chili leftover from the previous night and sweetly agreed to eat that for me.

The day with Caitriona was much better, although she has learned that screaming is the best thing to do when told to do something she does not want to do. She can stop the world with her piercing screams. I am certain the man in the car beside us last night thought I was terrorizing her. There were literally people peeking their heads out the doors in the small office building which we were parked next to! Putting her into a car seat when she wants to walk (again) could be classified as child abuse, maybe? And to expect her to sit in a high chair while we eat. Whoa! What was I thinking?!?

Then, Sweet Tomatoes was getting ready to close. I had to get whatever else I wanted off the buffet before they put things away. I got a generous helping of chocolate lava cake with spiral ice cream and peanuts. Caítriona refused to eat another bite of her soup…. the soup she insisted on getting up to get while I was trying to eat and she already had a full plate in front of her. I insisted she eat the last three bites of the clam chowder before she shared my lava cake and ice cream. Her refusing her soup, and me refusing to be controlled by an almost-2 year old, I won, of course because I did not have to share my cake and ice cream!

The highlight of my night was coming back to the hotel (technically on day +14) and Lauryn had left me a note, a chocolate mini bar and a glass of wine. What a sweet girl. She has had her hands full with Caítriona, for sure! When I stop to think of the dynamics of this situation and the separation of our family, the dedication of each child, the persistence of everyone to keep doing school and help wherever and whenever needed, I am eternally thankful that we homeschooled from the beginning and raised children who put family first. Having such good kids has made this overwhelmingly difficult situation much easier to tolerate. We are all counting down the days until we can see each other again.

Day +12 was uneventful for Naomi, but I know that really is as good as we get right now. Like the dr said during rounds yesterday, this is the nail-biting period. The best part of the day was that Naomi ate an entire cup of chili and 2 muffins. She also ate 2 protein bars throughout the day. Her labs reflect this as her protein is in normal range!

Caítriona (and laundry!) kept me away from Naomi for quite a bit, again. That well-spring of patience I found to get through Day +11 was drained really fast by Caitriona being so needy. I wish I could just put her into the Ergo and wear her in Naomi’s room for an hour or two a day. What a difference that would make!

Naomi’s thoughts were with Narnia all day. There was a Narnia DVD on the peds shelf. I grabbed it thinking it was one of the movies but it was about how the movie was made. She was disappointed. Today, I think I will download it from Amazon.

She kept herself from going stir-crazy by making bracelets and gifts for each of her siblings. She is so thoughtful. I think it is significant that the first person she made a gift for was Niamh, who she has historically fought with more than anyone else. It is little things like that keeping me moving ahead, as deep inside I am kind of feeling like the White Witch of Narnia. Sleep deprivation is not nice and seeing no change in labs feels like an endless winter. I am sure my family is afraid that I might turn them all to stone!

Aunt Marie might be my saving grace. She sent Naomi an awesome owl hat.

While that hat IS awesome,

I think what will ultimately save everyone’s sanity is the delicious yarn and knitting pattern she sent for me. I need to get my fingers to work! Narnia for Naomi and knitting for me. Please say some prayers that we can keep Caítriona better behaved today. She was a nightmare for Nanny. Her little world is spinning sideways and she does not know what to do. It is amazing how the smallest person has the largest impact on the flow of the day!

Sunday, 11 days after BMT.  12 days in isolation.  Let me tell you how amazing my child is.

Before I had left, she was lamenting being in isolation so long.  It was especially hard for me because I was informed last night that there is a really good possibility that she will be in isolation until discharged because she tested positive for the c dificil bacteria.  She has been on antibiotics for it for the past 9 days and is almost done with her course of treatment for it, but it is one of those things that is extremely dangerous to other neutropenic patients and contagious.  So, she will always be treated as contagious and not able to visit the playroom, family room, etc.  In some cases, if a child tests negative for it repeatedly, a doctor can override that, but the nurses said that is rare and most children stay on isolation because of the risk to the other patients in the unit.

So, anyway, I walked into the room to find her full of bubbliness and smiles.  She was watching Katy Perry on YouTube.  It was the making of the Roar music video.

I am so impressed with her ability to find something she likes and not linger in sadness.  We watched it together and then listened to Roar quite a few times and also Glen Hansard’s This Gift.

We played Connect Four and spent time with everyone at home on Facetime; Naomi and the boys even played Connect Four together through the Facetime, and then Naomi turned on the Irish music and started dancing.  She said that when she dances she can picture home in her mind and can imagine she is dancing at home on the practice stage.  She is truly phenomenal.  Her courage and strength will surely take her far in life.

After dancing for a while, she was getting hot and changed to a cooler shirt.  She is so beautiful.  I am a bit surprised that she still has hair.  I thought it would start falling out by now?  We are thankful that she is doing as well as she is.  After doing some research on recovery time periods, I have found a new well-spring of patience.

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This is a day late because I took most of Day +10 away from the hospital.  I slept at the hospital on Friday evening and left around 5:30am on Sat morning to drive to San Diego to take my Neonatal resuscitation class/exam.  During the previous week, I had to pass online exams before I could take the class.  I am thrilled that despite all I have going on here that I was able to complete the course!  After the class, I drove back to the hospital and spent the evening with Naomi.  I am so exhausted and it will take days to catch up on sleep, but it was worth it.  I did feel quite guilty leaving Naomi alone most of the day.  She had games, and crafts and all kinds of things to keep her busy though.  So, it was self-imposed guilt.

Naomi had a volunteer visit with her so that she was not alone.  I understand that he was a young man who was very musically talented.  They played on the piano on the iPad and then did some crafts.  I do not know who he is, but I am thankful for the time he gave Naomi.  While I was away, Naomi talked to Aaron, Micayah, Malakye and Niamh on Facetime and had consistent access to me on text message.

Day +10 began with her first blood transfusion since the transplant.  Her hemoglobin was down to 8.1.  I knew that transfusions after the transplant were likely, but was secretly hopeful they would not be necessary.  Once again, my unrealistic expectations have let me down!

She is eating fairly well because she wrapped me tighter around her finger….. I am now bringing most of her meals from outside the hospital.  I am thrilled that is allowed, but it does take longer to get in here trying to figure out what she will eat and when to make it or where to get it!  All in all, things are well.  We are beginning to be more impatient and anxious.  We now get her white blood cell counts each morning on her lab reports.  It is gut-wrenching to see no ANC day after day.  I really hope we start to see some improvement soon.  We are still absolutely within her dr’s expectations.  We had been told that it could take up to 25 days to see cell growth.  So, we continue to be prayerful and faithful.

We thank you all for continuing to cheer on the Lioness.  She sure is brave.  The nurses here all rave about her still eating and say that NO child with a BMT ever goes this long without a bag of nutrients.  The fact that she is still eating and not on a feeding bag is amazing.  I wish I could say it is all her, but in reality, I need to give myself a lot of credit for going out of my way to bring her the food she will eat.  I also need to give everyone who gave donations credit because without your generosity, we would likely be without a vehicle, short on food, and maybe Aaron would have 5 kids and me none because I would not be able to afford a hotel.  We are truly and humbly thankful to you all.

We press on through Day +11 with pride!

I am so excited that we are finally technically at Day +10 that it is tempting to just post about my excitement. But, alas, this is supposed to be about +9. So, I will stick on task.

+9 was a weird day. I should end there, but for your amusement, I will elaborate.

Caitriona was out of sorts due to teething. So, she kept me out of Naomi’s room quite a bit.

In the evening, I was informed by the evening nurse that the daytime nurse charted that Naomi “refused” her oral care. In reality, Naomi buried her oral care under a mountain of stuff on her tray and because I was distracted by Caity, she did not get reminded. When I asked the evening nurse why she was not reminded to take it, the nurse told me that they could be more insistent if I permitted them to be so. Ummm, I cannot be here 24/7. So, do we allow a 6 year old to dictate her medical care in my absence? Of course they should be more insistent!

There have been some nurses who have come in here and said things like, “Naomi, this is the second reminder to take your medicine. I will watch you do it now.” Those are the kinds of nurses that get instant results and credibility with Naomi. Nurses, like today’s, that do not spend time with her, drop her meds and run, and chart that she “refused” when she was really just distracted by playing with her sister (like a 6 year old should be able to do!) are quickly dismissed as here to collect paycheck and not really caring. Or maybe that is how just I perceived her. 😉

The final weird thing to happen was at dinner. I was texting Aaron while Nanny, Lauryn and I were managing Cait. Cait, teething (and trying on her new obsession with the word “no” to everything I tell her to do) was quite a handful all day. At dinner, I wanted peace. So I more or less let her be a big girl, feed herself and not sit in the highchair. All my decisions were thoroughly thought out, deliberate and the actions of a seasoned mom of 6. I was not interested in a power struggle. I wanted food! Initially, my phone tucked in my bag and everything was going well. Cait got tired of eating and started goofing around and climbing on my back. While wrestling with her, my text messages beeped and I knew it was Aaron. Caity continued to climb on me. I wanted food! So I grabbed a highchair and put her in it. There was NO way that she would consent to be buckled in without screaming in the restaurant and I was certain that everyone else there wanted peace as much as me. I chose not to buckle her in.

She sat nicely long enough for me to finish eating and to respond to a few text messages from my HUSBAND. Then she tried standing. I sat her down ad hurried to finish eating. Then, she was sitting on the edge of the highchair between my Grandmother and me and I put her back in her seat. She sat on the edge again and I removed her from the highchair to my lap and tickled her while texting my HUSBAND. Her Daddy!

Some older woman came up to me, placed her hand on my shoulder and proceeded to catch me completely by surprise by chastising me for “texting during dinner and neglecting my family.” I did not take her chastising so well and told her in no uncertain terms that she was a nosey woman who totally misjudged me. I was texting my HUSBAND who is in another STATE and I was far from neglecting my family. She then proceeded to tell me that she could see I was hurting and need Jesus. Now I was angry. Of course, I am “hurting” but not because I “need Jesus.” It is because my daughter is fighting for her life and I am exhausted! I told her that I knew God the Father, Jesus His Son and the Holy Spirit and am a member of the Holy Catholic Church. She said that she was Pentecostal and ready for the rapture and I could have a church community with her church. She totally dismissed my faith! She proceeded to tell me that the Catholic Church does not read enough of the Bible and I should pay more attention to the book of Acts and come to her church where I will hear prophecy and speaking in tongues.

I could not help but laugh at her saying that we do not read enough of the Bible. She has obviously never attended an RCIA class or a Catholic Mass at any point in her life!

Lauryn, by my side, laughed too and said we read Bible chapters every say and attend Latin Mass. Ahhh! I have to admit that I cringed when Lauryn said Latin Mass because I anticipated the woman’s reaction. Sure enough , the woman proceeded to attack Catholic readings and Latin as a dead language with no spiritual enrichment. She said we should be reading the Bible in our own language to understand it better. She has no idea that the readings ARE in our own language at the Mass, even a Latin Mass! So speaking in any “tongue” other than Latin is ok? She really barked up the wrong tree. I told her she was a judgmental hypocrite. She knew nothing about me, misjudged me and then attempted to help me “find Jesus” based on what she thought she knew about me. I guess she never read the verse about removing her plank…..

I think she thought she was going to evangelize me from the start. I believe that was her intent for chastising me to begin with. She saw me texting on my phone during dinner and interpreted that as being troubled or as she put it, “hurting in my heart and needing Jesus.” Yes, I am hurting. But I know I have Jesus. I also know that I needed to text with my husband who I miss and did not need to defend myself to a total stranger. Next time, I think I will just eat hospital food!

What a weird experience. What a weird day. I am beginning to go stir crazy at the hospital. I cannot imagine poor Naomi not even leaving the room for almost 2 weeks now. I am so excited that Day +10 is finally here! We covet your prayers as we crawl through these last few days waiting for signs of cell growth.

Thursday was a good day for Naomi.  We are getting into a good routine with Nanny here to help.  It involves Nanny visiting Naomi alone while Lauryn, Caitriona and me do something together.  Sometimes we play in the family room, or take a walk, or eat a meal, or do laundry.  Then, Nanny and I switch places, usually when Caity is calm enough for her to be handled easily.  Some days, that does not happen and Nanny needs Lauryn to help entertain Caitriona.

No two days are identical, and we have to tweak things based on Caitriona’s behavior and mood, but generally we do the same things each day.  I thought it might be nice to give you a glimpse at our day:

8/9am-10am wake, call nurse for AM update, shower, breakfast, dress kids, pack lunches, call in breakfast order for Naomi to be delivered around 10:30am

9/9:30am – Naomi wakes, takes meds, texts me and Daddy, stays busy until I arrive.

10:30/11am-4:30-5pm – arrive at hospital; wash/dry laundry (a few days per week); help Naomi eat, put away toys, books, etc and organize Naomi’s room, bathe and dress her during noon-2pm pump break (when her medicine is not being infused for the two hour break), disinfect surfaces in her room like the tables and plastic parts of bed, etc; order Naomi lunch, have physical therapy, play therapy with Child Life Specialist and Recreational therapist or Music Therapist, doctors make rounds.  2pm each day she gets a small blood draw to test the levels of her medicine in her system.  We work through her learning goals or play.  Caitriona naps in the family room at the hospital, in her stroller, or in the van depending on where we are and what we are doing.  Lauryn works on her lessons in the family room of the hospital.

5pm-8pm – I go back to hotel to make and eat dinner and feed Lauryn and Caitriona.  Nanny washes dishes.  Kids gets baths and play with toys.  I either call in a dinner order, or lately have been making or buying Naomi’s requested dinner and taking it back with me… Around 8pm, I pack up my night bag to leave again…

10/11pm – Nanny puts Caitriona and Lauryn in bed.

8/9pm-1/2am – I go to the hospital and hang out with Naomi.  We work through the rest of our learning goals for the day, play, watch a movie…. well, she does while I nap!  We always end the night (morning?) the same way.  At midnight, she has her daily blood draw.  By that time, we have turned off the tv and turned on relaxing music.  I fill the diffuser with lavender essential oil, close the curtains and blinds, give her a leg and foot massage with essential oils, clean up her room one last time.  On her dry erase board, we change the day, date, day-count, and we set learning goals for the next day.  I am so proud of Naomi for working on CCD, math, reading and practicing on the keyboard pretty much every day recently.  She is learning the value of setting goals and working through them.  Being productive makes the days go by more quickly and helps us to feel better.  We are not just” getting through the days” but actually progressing in various areas of our personal lives.

Naomi always falls right to sleep when I leave.

2am – I arrive back at the hotel and work on a project.  Sometimes, I have to pay bills, reconcile checkbook, grade schoolwork, assign schoolwork, etc.  I usually get to bed between 3-4am.  Like NOW!

It is hard to believe that a week has passed already since Naomi’s transplant and Micayah’s donor procedure.  Both of them are doing very well.  Micayah is back in Vegas and back to dancing and completely free of any pain or discomfort.  Naomi, still on contact isolation protocol, is becoming increasingly more difficult to keep busy as she gets more stir-crazy by the day.  I made the suggestion today that she turn off the iPad for the day an do other things.  It worked really well!  She has been very busy doing a variety of things and it is obvious she feels more productive.  The iPad has its place, to be sure, but sometimes it becomes necessary to be hands-on rather than tech-on.  Tonight, while I was with her I commented on how warm the yellow gowns get.  She said, “I wish you did not have to wear that.  You really do look silly.”  I reminded her that I am willing to look silly for HER!

Being the negotiator that she is, she has managed to work her way off ALL liquid medicines.  She is now on capsules or tablets of all her meds.  I am not sure if that was the work of a future attorney, or if her cuteness made them all feel so badly about making her cry over yucky-tasting medicines?

Today, after turning off the iPad, she played hide-and-seek with Lauryn (much to my disapproval!), played with doTerra essential oil scented therapeutic playdough, tic-tac-toe toss, kickball, puzzles and checkers with Mommy, watched the Nancy Drew Movie, played with her styling head, and got some mail!  She received cards and lottery cards.  Being a very sore loser of any game, she was almost insistent that we go to PA and buy another lottery ticket since she did not win.  I explained that another card would cost money, as would the trip there to buy another ticket which would just about make it pointless.  She said that she HAD to win “at least a dollar” and then proceeded to lament the unfairness of someone having paid for a card that she got no win on.  After about 2 hours, the losing card was still sitting at her bedside.  Having thought she had moved on, I was quite surprised when she abruptly sat up and grabbed the card, looked at it again with such disdain.  She handed me the card and asked me to “please throw this card away so I no longer need to be reminded that I did not win.”  🙂

She got an awesome blanket today, too.  It is soft and has her name in sparkles on the corner.  She had it on her bed when I came in today.  She said that one of the child life specialists brought it for her.  Her doctor did her rounds before I arrived today.  (I was delayed by laundry today.)  However, her doctor did peek her head in to tell me again how well Naomi is doing.  She continues to have no fevers; her blood pressure has stabilized; she continues to eat (sometimes with a lot of prodding required); no rashes or skin issues.  By all accounts, she is really doing extremely well and we feel Blessed.

Note: I made this post on Wednesday night and forgot to add the photo and hit publish. My mind is a bit scattered these days. I am homeschooling children in multiple states, juggling kids here and trying to be with Naomi as much as possible.

Tuesday was Day +6 and went quite well.  Naomi was awake earlier than she had been in recent days.  She had a little blip on the radar in the morning – she vomited just a little bit, presumably from the effects of the chemo.  She also said she was very tired, but I think she was just bored because she did not display much fatigue throughout the day.  We were watching a movie online and I felt inspired to draw a lion on her window with markers.  Seeing me do this, she turned off the game she was playing on the iPad, ignored the movie (which I then turned off), and proceeded to draw on the window with markers for hours.  While drawing and listening to music, the physical therapist came in and we bowled, did gymnastics (beam and balance techniques), and played kickball.  It was a blast!  Naomi had so much fun and we all laughed quite hard.  It was nice to see her having so much fun.  When the PT left, we drew on the window some more.

In the evening, Nanny and Lauryn spent some time with her.  I hear she was again using the markers…. but this time as drumsticks and the portable commode was the drum.  Nanny said that Naomi was really drumming and the nurses were happy to see her that way.

Before going to the hospital in the evening, Nanny, Lauryn and I went to the Old Spaghetti Factory for dinner.  While there, I asked Naomi what to order her for dinner.  She said spaghetti and meatballs.  So, I asked if she would rather it from OSF where we were.  She replied, “no hospital food yay yes please!”  We all laughed at that.  She ate 75% of a very large portion of spaghetti and meatballs!  The nurse was quite impressed at the amount of food she ate throughout the day.

If you logged on earlier in the day and saw a post that disappeared about her hemoglobin rising, I apologize.  When I called for an AM update, the nurse told me that Naomi’s hemoglobin was up to 10.8 and that the the previous day it was 10.08.  I am not sure that I heard her right, or maybe she gave me mis-information.  But when I got to the hospital and saw the labs and compared them with previous day’s reports, I saw that Naomi’s hemoglobin did not actually go up at all.  It went down quite a bit, actually.  So, that was disappointing.

But we press on.  Day +6 was an exciting day because Naomi received her very last scheduled dose of chemotherapy!  Her last dose of methotrexate was given at 8:45pm.  We are very happy that is over and now as we go into our second week of waiting, the excitement is increasing.

Look at how far we have come!

Friday 01/10/14 -5 Admit to Peds 3 West Fludarabine 30mg/m2, Cytoxan10 mg/kg
Saturday 01/11/14 -4 Fludarabine 30mg/m2, Cytoxan10 mg/kg rATG 15mg/kg 
Sunday 01/12/14 -3 Fludarabine 30mg/m2, Cytoxan 10 mg/kg rATG 1.5mg/kg 
Monday 01/13/14 -2 Fludarabine 30mg/m2, Cytoxan 10 mg/kg rATG 15mg/kg 
Tuesday 01/14/14 -1 rATG 15mg/kg Start CSA 1.5 mg/kg lV BID
Wednesday 01/15/14 0 Infusion of bone marrow
Thursday 01/16/14 ‘l MTX 10 mg/m2
Saturday 01/18/14 3 MTX 5 mg/m2
Tuesday 01/21/14 6 MTX 5 mg/m2

Day +6 ended with Mommy and Naomi snuggling in bed together and watching a movie.  Mommy woke up with Naomi wrapped in her arms and the tv off.  Mommy then tidied up the room, refilled the diffuser with lavender and snuck out of the room and back to the hotel.  Considering where we are and that we have to make the best of the situation, it was the end of a really good day.

Naomi was a bit contentious today.  Having more of an appetite this morning than previous mornings, I thought we were off to a great start.  But by evening, she was pitching fits about meds again.  Yesterday, she was able to work her way from liquid flagyl to a tablet.  Tonight, she was able to get switched to tylenol tablets instead of liquid.  It was a well-earned award, almost worthy of an Emmy for best drama.  Just when I think that we have reached a new level of maturity and we are beyond tantrums over meds, something like this happens.

Her energy continues to be great.  This evening, we played kickball in the room.  She enjoys time out of bed and does just about anything she wants in the room.  But lately, she doesn’t want to do much because she is bored.  It has come t the point where I have to suggest what we should do, and then even she does not often think my suggestions sound appealing.  She is beginning to get more impatient about being on isolation.  She will be on contact isolation for her infection for seven more days.  It is probably wishful thinking that her white blood cell count might recover enough by then that she can leave her room.

Day +5 began with me still with Naomi.  We watched Oz the Great and Powerful and snuggled.  Today, she wanted Nanny and Lauryn to watch that with her.  So, I kept Caitriona occupied long enough for that.

I also got my van back today.  On that note, we are extremely thankful for the donations we have received from friends and family.  

We had a wonderful weekend with quality family time. It was hard to say goodbye and go separate ways, but at least we did so with Naomi in relatively good health and having great days.

My Grandmother, Nanny, flew in this weekend from Pennsylvania to stay here and help for the next few weeks. She hung out with Naomi for a few hours. It was so adorable that Naomi wanted her right beside the bed and they moved her chair to make that happen. Nanny and Lauryn stayed with Naomi, giving me time to be with Cait who is not allowed even near Naomi’s room. After a while, I joined Naomi and then Lauryn and Nanny went with Cait.

Naomi is still fantastic. Her appetite is not great but it was not prior to admission either. She grazes throughout the day and is keeping her team impressed enough that they have not put her on tpn yet. That could change in coming days since her protein needs are very high right now. Her doctor continues to be very happy with her condition.

Micayah, our hero, returned home this weekend and is seemingly back to himself. The hip pain was gone by Friday. His lingering issue was his sore windpipe from the intubation during his procedure. That was completely gone by Sunday and he was feeling just fine as he and his brother were wrestling like boys do.

Aaron and I have decided to register as blood donors and also with the bone marrow registry. If it were not for the generous gift of blood from strangers, Naomi would not be with us today. Also, seeing how selfless and dedicated Micayah was about being her donor, we want to be willing to help someone else, if we can.

Now that he is gone, I will miss the alone time I had with Micayah. This situation has given me a chance to spend some much-craved one-on-one time with some of my children. By the end of these months, I hope that each of them will get their own time with me.

Today, Day +4, Naomi ate 3 small meals, danced, played kickball with me, played computer games with Lauryn, played Risk with the boys, snuggled with Daddy, colored Valentine’s Day decorations for her bedroom windows, watched a movie and cuddled with Mommy, hung out with Nanny, got her yucky medicine changed to capsules (being cute definitely has its advantages!), and stayed up very late.

We feel very blessed to have things going as well as they are for her. I pray for speedy increase in blood counts and engraftment and for the next few weeks to go by quickly so that we can all be in the same room again. It was very difficult for both Niamh and Naomi to not be able to see each other this weekend. If Naomi’s counts start to improve before they come back next time, Naomi might be able to go out and see Niamh in the family room. We look forward to that day.

We cannot all be in the same room but at least most of us can see each other. Naomi cannot visit the family room and Caitriona and Niamh cannot go beyond the family room. But at least we are all in the same building, town, state!
On other news, Naomi tested positive for a bacterial infection in her digestive tract. So, she is on contact isolation which means we have to wear sporty yellow gowns while in her room and have scrupulous handwashing so we do not spread it. We were already doing the handwashing and the gowns just might be the coolest thing I have ever worn. 😉
Short post because I am enjoying my kids! Happy Friday!