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BMT +52 (Friday, day 68)

The days are going quite a but better since we moved meds to 10am and 10pm. It fits more with our desired sleep times. Getting more sleep has certainly helped to make the days seem less like we are killing time. 

On Friday at clinic, Naomi’s platelets climbed again to 77. Hemoglobin is holding at 8.8. Her ANC is still down around 500. It was dressing change day but other than that we were in and out of clinic rather quickly. 

We have been spending our days doing much the same with slight variety to keep it interesting. The weather took a turn to the cold and rainy again here. Our nurse practitioner told us a few months ago that the winter isn’t what is depressing around here but the spring because it is still so cool and rainy. She was definitely right. We are missing the sunshine and blue skies offered in the desert this time of the year. 

On day 50 it happened that they were serving cupcakes for dessert. We all were happy to have one to celebrate Naomi’s 50th day since transplant. It was also that evening that Cait dumped water all over the black and white cat puzzle that we had been doing. The pictures on the cardboard begin to peel off of many of the pieces and the puzzle was ruined. We had to take it apart and put it in the box and throw it into the trash.  It took us a few days to recover from that and only on Friday night did Naomi finally start a new puzzle.

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BMT +49 (Tuesday, day 65)

Today was our last day that we need to be at clinic at 8:30 AM. I talked to our team about the time difference at home and that it was difficult to FaceTime with everyone at home and do 9 AM and 9 PM meds. We would rather do 10 AM and 10 PM meds so that we can get an extra hour of sleep in the morning. They were absolutely fine with that and so now we do not need to be at clinic until 10 AM on future dates and we have moved Naomi’s meds back an hour to allow us an extra hour of sleep.


Last week, she was permitted to be off of the IV fluids for eight hours per day. Her metabolic panel today was beautiful proving that she is drinking adequately so they are now going to allow her to be off of the IV fluids for 12 hours per day! Progress. 


Her reticulocyte count is up into the 200s which is absolutely amazing and along with that her red blood cells are climbing and her hemoglobin is almost at nine on its own. It was 8.9 today. Platelets are up to 72. She continues to not need transfusions for the 3rd week! The white blood cell count and ANC are still sluggish though. It is likely that she is having some viral exposure which is likely suppressing her ANC. We don’t go back to clinic until Friday now. 


We are going to try to get outside a lot over these next few days as weather permits. Today is beautiful, sunny, clear blue skies and we are at the park as I write this entry. We have also considered making Wednesday “Adventure Day” when we leave the RMH and go on a day trip. I have to get myself psyched up for that because it will involve packing lunches and planning. 

I have kept myself busy the past few days working with the kids at home to figure out a game plan for completing the semester, grading tests over FaceTime and meeting by phone with our advisor to start planning next year. We have so much exciting stuff on the horizon. I am so proud of the kids at home for working as well as they have on their own. They have really impressed me. 

I call this Burnout from the 80s. I think she is ready to play a part in Footloose.  She sure keeps us laughing and running! 

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BMT +45 (Friday, day 61)

Naomi’s follow up CBC showed more ANC with platelets and hemoglobin holding steady.  We don’t go back until Tuesday. She is off IV now for eight hours of the day which allows her a lot of time to run and play and feel like a normal child. Along with her improved health it is giving us a lot of spare time here which is making the days feel longer actually and often more difficult to get through. 

Sinéad took a marathon nap which gave the rest of us time to do puzzles, knit, read and play without being interrupted a million times. She adds a lot of love to our days but she sure is a busy bee and a troublesome toddler for sure! Caitríona has now completed lesson 20 of Teach Your Child to Read in 100 Lessons. At this point I might make it our goal to get completely through the book before we leave… just to keep us busy. 

Due to Naomi’s lower ANC this week we have shied away from common areas which means we did not go to the study and play room areas on Thursday or Friday. It is amazing how going to that area helped us to focus on school work and when we are in our room we tend to play more and be less productive. We did take an hour in the game room today since no one else was on there. That was a nice distraction. 

I cooked three meals today because there was no dinner served. I made egg and cheese burritos tonight and everyone said they were good. Dad is the primary cook in our family. So I will take that as a compliment. I actually can cook. I just would rather bake. 

Caitríona said “it’s a good thing they cook for us on the weekend.” 

 I said, “yeah, you won’t starve or have to deal with my food.” 

 She replied, “when the other children go to bed, we are going to have a talk about what you just said.” 

 She is hilarious. 

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BMT +44 (Thursday, day 60)

Clinic was quick again. In fact, it was the smoothest clinic experience with Sinéad as well. That could be because her cough has been gone long enough now that she no longer needs quarantined and can be in the hallways and play area. No more of me standing in front of the door to keep her in the room. 

It was dressing change day. Naomi’s poor skin is looking so red and irritated under that bandage. They have the smallest cover possible over her site but I can see how painful those changes must be by the redness of her skin. She has always had such sensitive skin. 


Naomi’s platelets rose again, to 64; her hemoglobin rose on its own for the first time, too, to 8.6. But, her ANC dropped back down to 500 which has earned her a repeat test on Friday afternoon to see what the trend is. 

Naomi has now earned 8 hours per day off the IV fluids. This afternoon we went back to the hospital for her to spray paint Dr. Margolis’s hair before the Bucks playoff game. 

The name of our clinic and hospital is the MACC Fund Center/Day Hospital. The Midwest Athletes have done amazing things to support all these kids. Naomi watched the whole Bucks/Raptors game to see them show Dr. Margolis. Of course it wasn’t until the 4th quarter that he finally was on screen. 

On our way there, she ran, jumped, leaped and said she felt so free! Her attitude was significantly less cranky, too. It was nice to see. ​​

Earlier this week, Naomi’s chimerism tests results came back. Her levels are 99% Micayah’s in the red cell line and 100% Micayah’s in the CD33 line. We believe that the CD33 cell line was the cause of her failed first transplant. She varied having only 91-97% of Micayah’s CD33 cells, leaving a small percentage of her own cells to slowly eat away at the transplant. The Campath was supposed to wipe those out and apparently did. So we were very happy to see that level at 100%. 

We have tried to get back into a school routine around here. It has gone fairly well and allows us to be distracted from the loneliness. The days have felt so very long this week. We all really miss our family. We started a new 1000 piece puzzle of a black and white cat on a black and white polka dot blanket in a room with checkerboard walls and floors. The entire puzzle is black and white. It should keep us distracted for a while, too, if we can keep Sinéad calm enough to let us sit and work peacefully. Today we were able to do that with arts and crafts. She loves playdoh. 

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BMT +42 (Tuesday, day 58)

It was a long day. We checked out of the rental house and moved us back in at RMH with all our food. I sent some things home with Aaron in hopes of him not needing to come here again if we can miraculously go home early. We were told to expect to be here 100 days after transplant and that Dr. Margolis would be seeing Naomi regularly for at least 6 months. So our days here are far from over. 

Their leaving was really difficult for everyone. We watched the van drive away and then walked into the house feeling so lonely. This room feels huge and empty without all our big people with us. We played in the game room, went to the playroom for Sinéad who played while Naomi, Cait and I did some school work at the study table. We also did laundry and organized our room. We tried to avoid our room as much as possible because it felt lonely. 

After dinner, Naomi did some crafts and Cait and Sinéad played in the playroom. I am thankful for the variety of ways we can fill our days. I am anxiously looking ahead to June when we can hopefully go back home. June 15 is day 100. 

I did not take many pictures while the family was here. I hold the memories in my heart. It was a great week together. We took an afternoon to drive north a bit to walk down by the lake. It was freezing but worth the cold. 


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BMT +41 (Monday, day 57)

No one would get out of bed to come to clinic with us today. So it was just Naomi and me. She had her labs drawn, we played Chutes and Ladders and waited. We realized how dull life can be without anyone else here. 

Her labs are great. Hemoglobin 8.6, ANC 2024 and platelets up to 48! She is now allowed to be off IV fluids for 4 hours every day and has to demonstrate she will drink adequately to earn more time off.  She is due back to clinic on Thursday morning. Today is our last full day with the family. So we are out of here to pick up medication refills, stop at the grocery store and the post office. Then we will have family day. 

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BMT +40 (Sunday, day +56)

Happy Easter! 


We have been enjoying family time since Aaron, Micayah, Malakye, Lauryn and Niamh arrived. Each day we split time between the RMH and the rental house. We have savored every moment together, attended Good Friday services and some of the family doing a neighborhood Stations of the Cross. It was too much for Sinéad so I stayed back with her and had some  quiet meditative time in the church garden. 

On Saturday I attended an American Heart Association CPR Skills class to keep my certification current for my midwifery CPM status. I did the online portion on Thursday and then did the skills assessment in person on Saturday. It was nice to get that done and feel like I did a little work this week. 

We attended Sunday Mass as a family and then spent the day as though we were at home including afternoon naps (for Aaron, Sinéad and I!), hockey games on tv, knitting and hot tea, walks with the dog, Easter grass and baskets all over the floor, computer games, a ton of food, children both bickering and playing together. It really does feel like home with us all together and knowing how limited this time is makes us all a little sad. I wish I could keep them all here or fast forward another 50-60 days. 

Naomi continues to do well. We brought all her IV stuff over here Thursday night which has allowed us to make ourselves feel more at home and less like going back and forth. 

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BMT +37 (Thursday, day 53)

Naomi’s clinic visit was very quick today. She did not require any transfusions. Her platelets dropped from 33 on Monday to 31 today. Her ANC was 2025. Hemoglobin 9.1. It appears her low counts last week were viral suppression from the parainfluenza virus she had of which all her symptoms are gone. Micayah and Lauryn went to clinic with us today. Her doctor joked that Micayah must have arrived and kicked his cells into gear. Funny how that worked. 

After clinic, she and I were interviewed for a CBS news report that will air in about 2 weeks on the benefits of the dance/movement therapy program at CHW. I will share the link here when it is available. We are continuing to enjoy family time but today felt like it was a very long day. 

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BMT +36 (Wednesday, day 52)

Naomi was nauseous today so she ended up sleeping for most of the day. She couldn’t tolerate food until late in the day. I called the clinic and spoke with her nurse. We suspect that she needs more time on the Prilosec as she kept saying that her stomach burned. Or maybe she waited too long to eat breakfast after taking meds. We will discuss it in clinic tomorrow with the doctor and see what he thinks. 

Having the family here has been wonderful. Home is definitely not a place, but a feeling one gets when with people who they share life. We had a great day together and are enjoying every moment we can. Every picked up right where we left off and it feels amazing.  Naomi felt well enough to eat dinner with us tonight. Then we all went to the game room and played. 

Sinéad bowled alone and played pinball with Daddy. 

Niamh driving…. now this was fun to watch!

​​​All 7 kids together in one shot. 

And Daddy playing too. 

You’re on the same team, guys! Stop arguing! You didn’t think all my kids get along all the time, did you? Ha!

I think it was 11-0 at this point. Naomi and Aaron led Lauryn and Malakye….. total wipeout. 

When I wasn’t taking pictures, I was bowling with Sinéad, playing hockey against Caitríona or gobbling ghosts with Pac-Man. 

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BMT +34 (Monday, day 50)

Clinic was fast and easy! By 10:35am, we were back at RMH, dropped our things off in the room and went outside to PLAY! 

Naomi’s ANC was almost 1000. Her hemoglobin was 10.2 and platelets at 33. 

We are reducing her heartburn/indigestion meds since that has not been an issue. As soon as she is no longer transfusion dependent (maybe this week?) we can reduce her Zyrtek also. 

Everyone is generally healthy today. Caitríona has a touch of something. She was due. She said her throat hurts And she sounds like she has a frog in her throat. But her energy and attitude is great. 

Please keep Aaron and the children with him in your thoughts and prayers as they make the 26 hour drive to be with us for Holy Week and Easter. 

Naomi is due to report to clinic on Thursday. We will be enjoying a few days off. I may post some photo blog entries and be light on words while enjoying my family all being under one roof. Naomi was given clearance to stay at the rental house this week. She may also attend Mass this weekend. We are all beyond excited to be together. 

Here is how the 1500 piece puzzle is coming. 


On Monday, our friend Sam got out of the HOT unit after his BMT. The kids were all happy to see each other and play together. 


There was also music therapy to keep us busy for a while. 

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BMT +33 (Sunday, day 49)

I don’t have much of an update for today which is a good thing. Naomi had another fantastic day. We played outside in the garden; some of us took naps; we moved a puzzle from the general dining room to our kitchen on Saturday night and worked on it quite a bit today. Our neighbor right next door was the only one working on it with us. So we moved it to our shared kitchen for our convenience. I can contain Sinéad in our wing of the house more than in the general dining room where she runs laps around the balcony, plays on the steps and wanders into other wings of the house. It is a 1500 piece Disney puzzle and quite a challenge. By Sunday evening we had accomplished a significant amount on the puzzle. In the evening, I spent some time knitting and reading with Cait. It was such a normal-feeling day that I forgot to give Naomi her night meds and had to wake her at 10:30pm to give them to her. She said, “oh no! Thank you so much for waking me.” The day was really light on photos too. This puzzle shot was the only photo I took to share with the friend who gave it to us and show her our progress. 

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BMT +32 (Saturday, day 48)

We had the entire day off. The weather was beautiful; sunny in the 60s. The wind was a little much and required a hood at times. All of the girls had an absolute dream day playing outside in the garden for hours. 

Naomi is definitely feeling better. Now I just keep hoping it is through the family and Caitríona doesn’t end up with it. I suspect she has had it already as I know she had croup before. The question is whether it was the same strain as she previously had and has antibodies to already.   

Both main meals were provided at RMH. So I even had the day off of cooking. I got a little bit of knitting done to catch up on Naomi’s blanket. Hopefully I can get that all caught up this weekend. Sunday is supposed to be another beautiful day. So I expect them to be outside most if the afternoon again. 






1

BMT +31 (Friday, day 47)

Getting to clinic was difficult for all of us.  We were the latest ever because we woke up at 8:13 and were supposed to be there at 8:30.  Fortunately I had breakfast and lunch packed to go.  So when we got there we ate our breakfast.

Sinéad and Caitríona were well behaved again.  Naomi had to do a prophylactic breathing treatment – pentamidine.  So, I took the girls for a walk while Naomi did that.  We went to the cafeteria for iced tea, up to Naomi’s room to drop her iced tea off, down to the second floor to enjoy our iced teas in the lounge, around the auditorium and to the bathrooms, down the steps to the first floor, past the aquarium where we watched the fish, and then up to the 5th floor and back to Naomi.  She was finished with her breathing treatment by time we got back and the walk was a nice adventure.

Clinic was fairly quick today.  Naomi’s platelets held at 14 over night.  Amazing!  She was still given some platelets for protection over the weekend.  Her virus tests from yesterday came back and she was positive for parainfluenza type 3.  It was what we assumed her to have based on 1) it is going around and other children in the community have it, 2) Sinéad had croup, 3) symptoms all point to it.  It is common for children ages 2-6 and is associated with croup, pneumonia, and upper respiratory symptoms.  When some contract it, it appears as typical cold.  There is not much that can be done to help her get over it except time and IVIG when needed.  She got the IVIG on Tuesday and seems to be improving greatly today.  Her ANC took a hit from the virus to 270.  But she just needs time to recover.  I picked up some Tylenol after clinic today.  The nurse said that I can give her a dose if necessary over the weekend to help with pain relief.   So she feels extremely weak at times.  She felt much better today.  She walked to and from clinic on her own two feet.  She played with her sisters a lot tonight.  It brought tears of joy to my eyes to watch her and Cait pretending to sword fight, tickle each other, chase around the room and hallway, and laughing together.  It was as good for Caitríona as it was for Naomi.  But seeing Naomi play like a normal child made all the difficulties of this week feel like it had been worth it.  She was witty, had a sense of humor and was my Naomi again.  Thank God.

We had a really nice and lazy night around the room.  We are staying in isolation more this weekend and into the future.  I am praying for the health of Aaron and the children at home as they are preparing to come here and Naomi is so at risk for contracting illnesses.  I am looking forward to a weekend of puzzles, knitting, cleaning up the closest to pack stuff to send home with Aaron after Easter.  We are saying goodbye to all winter jackets, gloves, and some finished puzzles.  It is supposed to be a nice weekend with temperatures in the 60s and maybe even the 70s.  I am not sure that Naomi will have the energy for a hike like last weekend, but we will definitely get out for some fresh air.

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BMT +30 (Thursday, day 46)

I woke and gathered dirty laundry, prepared to clean (dust, vacuum, disinfect everything) and got myself dressed and ready for the day. I felt like it would not follow course though. Naomi barely ate her dinner last night and was extremely moody.

I walked into the bedroom to grab clothing for Sinéad to see Naomi laying in bed. She felt really miserable. Everything ached and she was tired. I took her temperatire and it was 99.6. I did not delay calling the Day Hospital/Clinic.

They told us to come in and we could check labs and go from there. Within an hour, we had eaten and gotten over there. Naomi sat in the stroller and I pushed her because she felt too tired to walk.

Her labs were decent. ANC of 870. Her hemoglobin was 7.6. Normally we transfuse at 7.0 or below but with her feeling so bad, she received a transfusion today. Her reticulocyte count continues to grow. Her ANC continues to improve without G-CSF. Her platelets held fairly well. They were 18 on Tuesday and 14 today. So we are definitely seeing progress.

She received a dose of Tylenol as soon as we got there. Her temperature was already within normal range when we got there too – 98.7. Within too long she was acting more normal  likely because of the pain relief the Tylenol gave her. They also swabbed her nose to detect for viruses to put a name to what we are dealing with here. The course of action will vary based on those results.

Sinéad and Caitríona were so well behaved today. They watched some Curious George while Naomi napped. She slept for about an hour while being transfused.

Naomi sat in the stroller on the way back to RMH too. I was reminded of all the days she was too weak to walk after her first transplant and realized that today was the first day she required assistance. This virus has knocked her down hard. Upon returning back to RMH, she napped for over 3 hours again. Caitríona finished this puzzle while I fell asleep with Sinéad and Naomi was also asleep. I slept for about 30 minutes, tried to sneak away and Sinéad woke and then I had to get her back to sleep before finally escaping.


After waking, Naomi said she felt like the nap did nothing for her as she was still so tired. I made her lemonade and homemade ginger lemon iced tea. We are attempting to get more fluids in her.  She ate about half her dinner which is the best she has eaten in the past 2 days.  During dinner, we finished this puzzle together.


Tonight, she took a bath with lots of pampering Posh including her Bubbles on Bubbles on Bubbles and All I Avo Wanted face mask. Then I gave her a massage with lemon essential oil lotion. She was feeling less achey after all that.


I am also feeling pretty sore, likely from pushing her uphill in that stroller while chasing Sinéad…. well, actually turning around to see where Sinéad was, stopping and going back for her, carrying her, sitting her on top of the stroller and pushing them both…. uphill. I also had to do 3 loads of laundry this evening and all the cleaning that I planned on doing throughout the day.

I am starting to physically and mentally feel the effects of being a “single mom” as I am craving some time alone. One of the hardest things about being a parent to many children is when one thinks another has it better. That competition is too much. I cannot keep up with equalizing and one upping or wishing that one had what another is getting. There just is not enough time in a day and energy for one person to do everything for everyone. So I have to choose what matters most and will have the greatest benefit. On that note, Caitríona read her first sentence today. We have now conpleted 13 lessons of Teach Your Child to Read in 100 Easy Lessons. My goal is for her be through as much of it as possible when we leave here.  We try to do more than 1 lesson a day but have not gotten to it each day.  The countdown to seeing the rest of the family is on.  I can’t wait to hug my husband, kids and puppy dog.