I arrived at 8am today to find that Naomi had a fever overnight and her hemoglobin dropped considerably.  Her care team did a chest X-ray to be sure that her chest looked fine after the line surgery since their primary concern was blood inside where it didn’t belong.  It was all normal.  The drop in hemoglobin is likely due to her having IV fluids.  So chemo protocol is proceeding today.  They are monitoring her for creeping creatinine levels.  It is possible she will need a change from Bactrim since it seems to make her kidneys unhappy.  This morning she is having a harder time because of how often she was woken up last night.  She said the nurses come in very often and are not quiet.  I did not sleep great myself knowing what was ahead for her, but at least at the RMH I got a few hours of uninterrupted rest.

Naomi did math and spelling so far today and had a visit from Cheeto with pet therapy.  She is eating breakfast now and then she will have some play time and craft time.  Staying busy is the theme of the day….

I saw this article circulating tonight and had to share. Southwest Airlines covered the airfare for Naomi, her donor and a parent to fly from Las Vegas to Milwaukee. Southwest Airlines did EVERYTHING POSSIBLE to make our trip here as smooth as possible. This business will forever be my first choice. They were also involved in Naomi’s Wish Trip to PA and made that trip easy and memorable. 

http://6abc.com/travel/southwest-airlines-donates-10000-flights/1775773/

Today was the 8th day we are here and it also marked -8 to BMT.  Her catheter went in well with no complications or concerns.  She now has a purple line coming out of her body just beside her right armpit.  Recovery went well and fast.  She ate very well after needing to fast for this procedure requesting 3 meals in about 6 hours time.  She ate grilled cheese, tomato soup, chocolate milk, a ground beef burrito with the works and rice and refried beans, a yogurt berry smoothie and an orange sherbet.  I was impressed.  She seems determined to eat through the transplant and said the hospital food is actually good. She is permitted to eat whatever she would like from the menu at any time of the day.  She is also allowed and encouraged to leave the room, walk the hallways and be as active as she feels capable.

She was in a playful mood this evening but not photogenic in the least.  Getting used to being inpatient again was a bit of a challenge for us all.  It became very real today.  Once Micayah and I returned to the RMH tonight we played some ping pong to destress.  It is amazing how long a day can feel but I am thankful to have him here with me and will enjoy every moment of it until I have to send him back home.  Naomi’s chemo begins at 8am CT tomorrow morning. Please keep her in your thoughts and prayers as we head into a long and trying few weeks.

Micayah at the window; Naomi hiding under the blankets.

While Naomi is in surgery getting her new line, Micayah and I moved her into her new room. She has some exciting views out the window in her room. 

This morning we spent a few minutes on the puzzle she has been working on with some friends we made at the RMH. 

We didn’t have much room to bring things from home. Aaron is sending some things from home this week for us. Also we plan to decorate the room with crafts as we pass time. For now, it is just the essentials. 

Many of you have asked for our address here. You can send mail to:

RMHC Eastern Wisconsin

Naomi/Kristy Wilson #114L

8948 Watertown Plank Rd

Milwaukee, WI 53226

Those of us who have lived through this disease as parents often have what I call an “AA Mommy Moment.” A friend of mine likes to say “once a hem/onc mom, always an hem/onc mom.”  I don’t think she “likes” to say it but….. I think you know what I mean. We are the moms who think about neutrophils, hemoglobin levels, scrutinize as possible GvHD all rashes on the body that show up out of nowhere, etc. These moments also consist of reactions that seem to be of an overreactive nature, out of character, and unnecessary. 

I’ll be having a lot of these moments this weekend as I guard and protect Naomi from illness in hopes of keeping her from being hospitalized this weekend. I will admit to having PTSD after the first transplant and having many of these thoughts way past the necessary timeframe for them. I’m going to start blogging then here for my record and to let others with AA family know they are not alone! 

So last night’s AA Mommy Moment. I woke from a deep sleep and heard Naomi cough once. I put my hand on her head to feel for a fever and was thankful she felt cool. I layed there in the dark paralyzed with fear that it could be a fungal infection. 

We share a kitchen with 2 other families. There was a family out there last night hanging out for about 2 hours. We avoided the area while they were there. We usually avoid crowded areas just because of her weak immune system but we practically ran through that hallway last night and took two flights upstairs to the general resource kitchen for food because we heard one or a few people in our kitchen coughing and sniffling. So, my AA Mommy Moment was to be scrubbing the kitchen with disinfecting wipes at 11pm so we could have some snacks in our kitchen. 

Naomi has sat at the window watching the snow for the past 30 minutes. It was the first thing she thought of when she opened her eyes and the only thing she has done since. Her mouth is literally hanging open in awe and excitement. She loves the way the snowflakes don’t fall straight to the ground but kind of dance and loop their way there. She is so cute! 

Today consisted of psychological interviews, Naomi’s infusion of the antifungal, and a CBC that showed her at 0 ANC.  Naomi found some of the questions during the psych evaluation absurd.  I wasn’t in the room, but according to her when asked “why do you want a transplant?”  she said, “That’s a weird question.  I don’t WANT a transplant.  I NEED a transplant!”  Micayah had his pre-op meeting to review his harvesting procedure.  It will take place on Monday 3/6 at 1pm Central.  He is expected to be in recovery until 4/5pm.  Naomi will receive his cells on Tuesday 3/7.

We also toured the inpatient hospital rooms where she will be admitted Monday.  The rooms are quite agreeable to us.  They are very welcoming and colorful, more like a bedroom and less like a hospital room.  They are positive pressure rooms and offer privacy, space and comfort.  Prior to admittance on Monday she will have day surgery in the CT/ultrasound area to install a new access line.  She is completely without a line this weekend and we have no scheduled appointments until Monday AM.  We will just be resting and relaxing all weekend.  The Ronald McDonald House had us on a waiting list for a suite and we were able to move rooms today.  So we are now in a long term suite which is like a small apartment.  Our kitchen area is more private as well.  I am getting anxious to get to a grocery store.  I have not been able to get there this week due to juggling appointments for both kids.

Some downtime this weekend is much needed as we prepare for chemo next week – this week has been a whirlwind.  I hear that it was an in-house record for arrival to CHW and getting to transplant.  It took 4 clinic days to get all pre-transplant evaluations and paperwork complete and conditioning will begin just 8 days after arriving here.  Everyone here has been as organized and on the ball as I’ve ever seen a medical center. Also the cleanliness here is remarkable, both at the hospital and in the RMH. Very impressive. 

Today was a cold, rainy, and cloudy day.  We actually didn’t take any photos at all.  The highlight of our day was moving into the new suite and checking out of the old room.  Also, getting her PICC line removed so that she doesn’t need any infusions or medical care this weekend.  We were also very excited to learn that our case manager at Aetna was changed so that we have the same one as last transplant.  She was thorough, organized and prompt – so we requested her again.  Our BMT coordinator said she wishes every case manager was as good as ours.  I am thankful to have her back!

Of course we would be put in the Lion King room for the CT exam!

We overslept this morning but still made it to the hospital on time. It has been a very busy week with a lot of meetings and appointments and tests, daily infusions and planning. It was all hypothetical based on an assumption, hope and prayer that Micayah’s telomeres would be normal. 

Naomi started today with her nuclear medicine test to test kidney function. While that was happening we met with our nurse practitioner who had not yet seen the doctor today. Then the NP left and the Dr walked in and said “Micayah, your telomeres are NORMAL!” We all cheered and clapped. From that point on the day has FLOWN by as everything went into full throttle to make this happen sooner. 

The amount of people working for her is nothing short of amazing. She has two nurses, the doctor, the nurse practitioner, the psychologist, hospital case manager, hospital BMT coordinator, insurance case manager, imaging department for CT, kidney and pulmonary tests, and her brother. Aaron and I also sat in on a telecom today with her team to review chemo protocol and confirm everything. I also signed a bunch of paperwork today. (Aaron is dealing with his own issues at home working full time and being the lone parent to 5 children while the electricity was turned off for repairs and the sprinkler is flooding the side of the house because there is a leak under a sidewalk. No rest for the weary there.)

All of Micayah and Naomi’s evaluations will be finished tomorrow. She will be free over the weekend (as long as we maintain health). Then the plan is to admit Naomi Monday when she will have surgery to get a new line. The ultrasound of her arms and neck was done Wednesday and revealed very small veins. So she will need to have a chest double lumen put in again. It wasn’t our first preference but is essential. Her veins in her arms are just too small for a double lumen. 

Naomi’s treatment will likely begin Tuesday and consist of 6 days of chemo (-7, -6, -5, -4, -3, and -2). She will have one resting day to detox from chemo (-1) and Micayah will have surgery on that resting day. Then on Day 0 she receives Micayah’s cells. 

Her chemo load will be heavier this time with significantly more cytoxan than her first transplant (3 times more) and she will have campath this time instead of ATG (since ATG hasn’t worked for her twice before). She will most certainly lose her hair, be on a lot of antinausea meds and has the potential for more side effects than the first transplant. 

It has been a lot for us to process in one day. Every person here has been wonderful, supportive, patient and just truly compassionate to her even through her moments of having difficulty handling how fast this is all moving. Naomi was having a hard time accepting that she would need to do a contrast drink for her CT scan. So, the Dr allowed her to forgo the stomach CT and just do sinuses and chest and said no contrast needed which meant no fasting needed which meant that we could finish it today and not delay. 

After her CT is complete this afternoon (we are here now and waiting for insurance authorization), our plan is to go back to the RMH and REST. Micayah and Naomi are enjoying watching Lord of the Rings. I plan to cast on some yarn and put up my feet. It has been an overwhelming day and we need some R&R. It is also this cold outside today:

I am thrilled to report that Micayah’s telomere results are back and he is perfect. We are working on transplant timeline today and moving things ahead. Micayah will be home in time for St. Patrick’s Day performance with Scoil Rince Ni Riada and Naomi’s chances of becoming sick before transplant have decreased. Thank you for all the prayers!

Tonight after dinner Naomi and Micayah were playing piano in the great room. 

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Today we reported to the clinic at 9:30 AM and were there until almost 2pm. There was a lot of information, signing papers and discussing plans and possible timelines. Unfortunately the telomere test that was done last week was sent to a different lab than the one Dr. Margolis wanted it to go to because that is where Aetna had it sent. This incorrect lab said results would take 14 days instead of the originally expected 7. Furthermore, once the tubes arrived there the tests were placed on administrative hold for an unknown reason. So the results are significantly delayed. In fact that test was redrawn today and sent to the preferred lab who expects to have results Monday or Tuesday. We tried to expedite the test  because of Naomi’s critical ANC but that doesn’t seem to work much due to the testing process.

Taking turns playing Mario on the iPad.

Today her clinic visit included HLA blood tests to prepare for 2nd transplant, CBC to check for immediate transfusions and strategizing. Today’s ANC was 19. With such a very low number, we are on high alert monitoring for fevers and physical symptoms. Her Dr does not admit to the hospital for low blood counts but only for symptoms. So she is still an outpatient with me at the RMHC as long as her good health continues. She was infused with an antifungal “caspofungin” and G-CSF to try to boost that number. Her platelets dropped from 60 Sunday to 27 today, Tuesday.

Due to her low platelets, she will need platelets tomorrow. She is also scheduled to have pre-transplant procedures: echocardiogram/EKG and the pulmonary function test. Her daily clinic visit will include the antifungal and G-CSF.

After clinic, we went to the RMHC and had lunch. Then Micayah needed to report to the lab for donor testing.

Due to the delay in results for the telomere testing, we are proceeding with donor tests for Micayah but won’t actually begin chemo for Naomi until those results are firm. In the meantime, we’ve found 7 unrelated matches HLA donor possibilities in the database. They are doing more sensitive screening on those donors to see which is best as a backup to Micayah.

Micayah will need a good meal tonight after donating 16 tubes of blood to the lab.

We also gathered information from her first transplant facility. We were surprised to see how low a dose of cytoxan Naomi was given at COH compared to what is normally given. He is trying to confirm that there was not a typo in that paperwork and we will know that likely tomorrow. If the dose was indeed as low as it appears on paper, then it is no wonder she kept her hair during her last transplant and we are back where we are. He is also looking at the idea of not using ATG on her because her body has now seen ATG twice and he thinks she needs something else. That is a work in progress. He is fairly certain that he wants to avoid radiation for her though.

The next few days are shaping up to be very busy with tests for Naomi, psych evaluations for both Micayah and Naomi, social worker meetings, CT scans, and her PICC line will need to be revised into a 2 lumen.

All in all we are doing well. Tonight we will enjoy dinner as Naomi is no longer facing food restrictions. They said she can eat whatever she wants, even raw foods, but to use common sense and know where the food comes from. Like no salad bars. Her appetite today has been good. She has been active, and a little resistant to doing school work. So it sounds like a normal childlike day to me. I love that none of her doctors came in with a white jacket. The gear for nurses is a CHW shirt and scrubs. They’ve been baptized by Naomi’s sense of humor and tricks too.  She has made herself adored at yet another hospital. Not sure how she manages to do that so fast.

After all of the conversation today, we have the following understanding.  Basically there COULD be 3 causes to her current AA relapse. NOT ALL OF THESE ARE THE CAUSE BUT POSSIBILITIES and what we are examining during these days before coming up with a transplant protocol:

1) Bad “soil” in her body. Not much we could do about that.

2) Her immune system was not suppressed enough during the first transplant and her WBCs are back. Even just a small amount of her own WBCs could be causing this issue (and likely is).

3) Micayah’s cells were not good for her. This is less likely, but why we are looking at other donors and waiting for those telomere results before proceeding.

We greatly appreciate all the prayers as we brace ourselves each day to get through as well as we can and wait for results ASAP. It truly is a walk in faith. Her existence is a miracle and that we are here in this place right now getting her the best treatment available is also a miracle.

They were telling Naomi that at the pulmonary function test one of the doctors is a magician who does magic tricks. Naomi rolled her eyes and said that she doesn’t really like tricks and is too smart for that. Then the doctor said that Naomi is in the magician because she made her counts disappear. It was hilarious! All her nurses, doctor, us and the social worker were laughing. 

I’ve already blogged about the travel. After we landed we took a taxi to the Ronald McDonald House (RMHC) attached to the Children’s Hospital of Wisconsin (CHW). The amenities here are amazing. While the bedroom itself is a little on the small side, it will definitely work and the privacy is lovely. We’ve stayed at RMHC in the past and not felt like it was all that private. There is lunch to go available each day and dinner served each night at 6pm. We have a pantry, fridge/freezer/stove/kitchen available for our use. Here is a music room, game room, book nooks, “magic” room, and many spaces to sit/relax. There is a piano in the lobby which Naomi is welcome to use anytime. 

We can utilize the skywalk to cross the highway and then we are at the hospital! It is like a 10 minute walk from our room to the outpatient clinic and the inpatient BMT unit. While it certainly isn’t home and the children and my husband are not here, I can do this. 

Today we went to the BMT outpatient clinic to meet Naomi’s doctor. He basically said “she looks amazing. She doesn’t look sick at all. I wanted to meet you today to see how ill a child I was getting but I don’t think she will be hospitalized through this week and the weekend if that’s ok with you.”  We are still waiting for the results of Micayah’s telomere tests to know for sure if he will be the donor again. Until then, the plan is for Naomi to attend the outpatient clinic every week day and stay out of the hospital by avoiding humans. The hospital is spotless and so amazingly kept. I know for sure we made the right decision for her. There are 2 nurses who will care for her. The same 2 every day which makes me happy because there is continuity of care that we have lot seen anywhere else. 

When we checked in to the RMHC we had to fill out paperwork and part of it was to mark her diagnosis. It was the first time ever that “Aplastic Anemia” was available. It was then that it occurred to me that we may actually meet another person with AA! It has been this rare “1 in a million” disease that rocked our world….. and no one we know or have ever met has personally experienced it themselves. That is a lonely place because there really isn’t always an understanding and since “it isn’t cancer” there is a feeling of not belonging. It will be amazing for Naomi to meet another person who has personally experienced the ups and downs of this disease. 

After our very quick outpatient visit, we played in the game room, ate dinner (she ate a ton of pizza tonight after days of refusing to eat hospital food), unpacked, set up our room and are turning into bed early. We facetimed home a few times too which was very nice. It was a decent first day. 

Naomi enjoyed washing and drying the dishes after dinner. We have our own pantry, fridge and freezer space and assigned kitchen with stove, sink, etc. there are kitchens on multiple floors. One kitchen has lunch to go meals always available. There are general resource pantries stocked with all kinds of food choices for us to make ourselves. 

I think we need 2 or 3 sinks in the kitchen at home too. That is so awesome. 

(Above) The indoor skywalk to CHW. 

(Above) The outdoor skywalk to CHW which is covered but open. It will be chilly some mornings.