3

Eaton Canyon

The kids and I took a little hike around the canyon on Tuesday. We had a nice afternoon in the sunshine and look forward to returning there soon. There seems to be a lot to do there but not wanting to exhaust Naomi we only hung out for about an hour. It was her first hike and I thought starting slow would be best. She has made a few walks to the park, played for about an hour, and then walked back. This was just her first trip out designated for hiking. We all agreed it was nice to be out again and want to go again soon.

While these pictures all look great and the children so loving with each other, one of photos is a bit deceiving. The photo of oldest son and oldest daughter should be titled as follows: “Discipline at work – You Fight, You Hold Hands!” I do love the way the other four children also found a sibling’s hand to hold out of pure love for each other.

Oh, and in case you are wondering, yes, it did work. By time we were back to the van, no one was arguing anymore. ūüôā

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Day +40

Where does time go?  I can hardly believe we are almost half way to Day +100.  Naomi responded well to the Neulasta injection she received last week and her ANC and WBC counts both rose. Her RBCs, hemoglobin and platelets are all well above the need-for-transfusion-rate, making it 29 days since her last platelet transfusion and 14 days since her last red blood transfusion. That is very exciting.  I am so grateful for how well Naomi is doing.  Her doctor is also very pleased with her progress and has given us a week until her next appt!

That was the short update…. now for my journal….

Clinic appts involve a scheduled lab draw.  Then about 90 minutes later, we meet with the dr to go over the results.  The fun part is that wait in between!  Today was quite an experience with all six children and just me at the clinic.  It was certainly a juggling act to keep them busy and not bored, happy and not bickering.  It included a glass jar of water shattering and Cait falling on her face, literally Рfortunately not both at the same time.

Having a week before her next appt, I am not sure which sounds more insane: hanging out at the House all week, or taking six children on field trips by myself. ¬†I honestly considered sneaking home for a few days. But decided that our presence at home would be a distraction to Aaron as he tries to play a bit of catch up at work this week. The children and I will just rough it at some nature parks and beaches instead. ¬†So, I am looking forward to some field trips. ¬†We may as well take advantage of the nice weather and good health. ūüôā

A fun thing happened when we were at the clinic today. ¬†Before I tell you about today though, I have to give a little bit of history….¬†¬†Over the past 5 months, I have been forced to stop wondering what others think of me, or my child(ren). ¬†I have had to ask difficult questions and not be afraid of the answers. ¬†I have had to be strong when I wanted to crumble. ¬†I have had to be encouraging when I really wanted someone to be encouraging me.

We went to the park over the weekend and Naomi was wearing her Broviac shirt and her mask, as she often does.  I always see people looking at her.  Anyway, as she played like any other child there, I saw other parents looking at her and at me.  A few months ago, I would have become overwhelmed with fear of what they thought of me, or her.  As usual when around others, a few parents asked about Naomi and I answered confidently and without shame that she was recovering from a bone marrow transplant and doing really well.  Some ask more questions and other shy away.  I have learned that their response is about their comfort level with the situation and not my own.

Our family has been through so much over these months and is coming out the other side stronger for the struggles we have lived through. ¬†Each person in our family has had their own experiences, struggles and growths as a result of Naomi’s illness. ¬†I can remember receiving card after card saying things about being strong through the storm and that the sun will shine bright again. ¬†There were the cards that said that we do not understand why these things happen. ¬†I was stuck THERE for a long time. ¬†But in hindsight, we were right where we needed to be all along – we did not know why this disease struck our child, but we chose to remain faithful and be as fearless as possible through it all.

So, anyway, today at the clinic….. all six children were in the lab and the nurse came into the room and stopped in her tracks. ¬†She was not sure which child was Naomi because none of them looked like they needed care. ¬†She looked around the room at each child and remarked at how cute each of them were. ¬†She remembered Micayah first and said that he was the donor. ¬†She then realized that Naomi was Naomi and remembered seeing us late in 2013, before the transplant. ¬†She said, “oh, wait, you are just here for the day, right? ¬†Will you go back to Vegas tonight?” ¬†We said that we were here until maybe Day +100. ¬†She looked shocked and said, “You already had your transplant?!” ¬†We said that Naomi had and was at Day +40 today. ¬†The nurse marvelled at how great she looks and that she has so much hair. ¬†¬†It was a really happy moment for me. ¬†The events of the past few months when others looked at her with pity were all wiped away in my heart with the realization that each day moves her a little bit closer to having a completely normal childhood again.

Most importantly, the look on Naomi’s face while the nurse was trying to figure out which child was “sick” was priceless. ¬†I could see the smile going deep. ¬†She was so proud to feel normal. ¬†I was so happy for her.

0

45 Days From Home

Saturday marked 45 days since Naomi and I have been at home. At least we were all able to be together for a few days. This past week, we enjoyed the whole family being together for 8 full days!
It had its moments of ups and downs with all 8 of us in the master suite together. Quarters are a little tight. It makes the 1200 sq ft we had in Edgewood seem like a castle!
We appreciate the meals brought in by volunteers, even if i do need to prepare neutropenic food for Naomi sometimes because there is nothing safe for her. The other children can at least eat easily. There is also a Trader Joes just a mile down the road which is extremely convenient since we do not have much room to stock up food. There are many meals that we prepare for ourselves. The volunteer meals come frequently on the weekends.
We are all sincerely itching to go home though. There were some tears this weekend as Aaron prepared to leave and none of the children were going along.
Some photos of our week…..

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3

Day +36 – Clinic

At Naomi’s clinic appointment today, we learned that her levels continue to fluctuate. ¬†Her WBCs are at 1000. ¬†ANC dropped to 300 again. ¬†Her hemoglobin also dipped slightly to 10.7. ¬†Her platelets continue to soar and are at 135,000! ¬†The best news is that her biopsy results from last week demonstrated that Naomi’s bone marrow is 98% Micayah’s! ¬†At the 30 day biopsy, it is great if the donor’s marrow is at 90-95%. ¬†We are very pleased with 98%!

Due to her low ANC, she received an injection of Neulasta.  Like the Neupogen she received before her transplant, it will help to stimulate WBC growth and only needs to be given every 10 days.  Hopefully, it will only need to be done this one time.  Like the lioness she was before the transplant when I had to give her injections, so she was today when the nurse gave her the Neulasta.  It was a traumatizing experience for everyone.  I seriously have never seen such a stink raised in all my life as when she gets an injection.

There is not much more we can do except get through one day at a time.  The arrangements here at the House are decent, but difficult.  The policies are such that all children under the age of 18 must remain with a parent at ALL times.  While I understand the reasoning behind it, the logistics behind it are quite difficult to manage.  For an introvert like myself, I might need a week or two in isolation when this is all over.

Naomi is not due to the clinic again until Monday.  At that time, we will see how well she is doing and determine if we can go to weekly appointments.  Her doctor also gave us some hope of an early return home once her WBCs and ANC start to come up and stay up on their own.  Originally, we were told to expect to be here for 100 days after the transplant.  But due to our large family logistics and the fact that Naomi is recovering so well, her primary doctor said today that we can leave earlier as long as everything continues as it has been.

There are so many people who have made this difficult time so much easier to handle. ¬†Gifts from family and friends to show your love and concern, cards and letters of encouragement and support, dear neighbors and friends who care for our home and pets in our absence, ¬†coworkers and employers who are understanding and supportive, those who provide child care for our littlest ones and companionship to our older ones….. surely I am missing so many others. On that note, we are so grateful for all of your prayers! ¬†We have been Blessed by all the devotions, rosary offerings, Masses said on our behalf ¬†The mercies of God have certainly blessed Naomi for her to proceed so smoothly through the transplant. ¬†At this time, we ask that Naomi’s WBCs would be firmly engrafted and her ANC start to rise in a miraculous way. ¬†I ask for peace of mind for myself as I care for all the children here on my own over the next week while Aaron works, and traveling safety and a productive week for him. ¬†As we start to get anxious for our return home, we are planning a Welcome Home Party. ¬†I do not yet have a date or location, but will be sure to let you know when one has been decided and anyone interested in details can contact me offline at that time.

 

0

Happy Birthday Niamh!

At Naomi’s outpatient appt., we were a bit disappointment by a drop in her levels ¬†If one thing it true, it is that AA is a very frustrating disease. ¬†These fluctuations are to be expected, and nothing is unusual about it. ¬†Her levels are still plenty high enough to keep her transfusion-free, and that is really a good thing. ¬†Her ANC dropped back down to 500 and that is very frustrating. ¬†The target is 1500 for her to be able to return to Vegas. ¬†We are only on Day +33, and I admit to being impatient today.

All of my patience for today was apparently spent in traffic. ¬†ūüėČ

Her kidney function results were a bit high, too, indicating they are not flushing enough toxins (created by her toxic meds). So, one of her meds is on hold until her creatinine and urea nitrogen levels drop back into normal range.  To do this, her IV hydration overnight was reinstated.  It is almost impossible for a person to drink enough on their own for the meds to be flushed through the system.  We now expect that her IV hydration will continue into next week.  We tried a few days without it and some of her kidney toxicity levels doubled indicating it was too early to stop them. It does
Not really restrict her activity since it is infused through the night. It is just more responsibility for me and I do not sleep well when she is connected to an IV…. Even though she appears to sleep fine with it!

The wonderful news for today is that we are celebrating Niamh’s 4th birthday. ¬†Happy Birthday, Niamh! ¬†

It amazes me how much she has grown over the past 6 months. ¬†I think back to her before Naomi’s diagnosis and look at her now and can see such a difference in her behavior. ¬†She is much more compassionate and calm. ¬†She still has quite a bubbly personality, but is much more subdued and she can actually be reasoned with at times. ¬†Time has changed us all, I guess.

Tonight, we will be having a little party. ¬†We have invited all the other guests at the RMH to join us for cupcakes. ¬†One of the families from Mexico was so sweet to get Niamh a globa mariposa. ¬†Unfortunately, the weight it was attached to came off and it flew away into the clouds. ¬†The sweet Mexican girl who gave it to her then brought her a teddy bear that we promptly named “Mariposa.”

Niamh had a great party and we all enjoyed cake and company. Niamh was most excited about her new shoes for her birthday. ūüôā20140217-233407.jpg20140217-233431.jpg

0

The Moment She has Been Waiting For!

Naomi has wanted to ride a bike for months. Her platelets yesterday were 129 and her doctor said that if she were a football player, she would be allowed to play. So, I gave her permission to ride a bike. None of the bikes here fit her and anticipating that she would be allowed to ride this weekend, I had Aaron bring training wheels to make a bike here work for her. She is so excited!

YouTube of Naomi on Bike!

0

Day +30 Addendum

Naomi’s labs were pretty awesome today. Her RBCs and platelets are all up from Tuesday’s discharge. A normal RBC range begins at 4.10 and she is at 4.01. Normal hemoglobin begins at 12.0 – she is at 11.9!

Also, her WBCs are doing very well with a WBC count of 1800 and ANC count of 900.

Her bone marrow biopsy and aspiration went well. She had no reaction this time and her blood pressure stabilized much more quickly. This afternoon, she is doing quite well, even playing! Her and Lauryn have been singing ROAR all afternoon. She said that today “they held me down, but I got up” with bone marrow biopsy and aspiration. She says she has had enough, too. Yeah, I hear that!

The only thing lacking today is her appetite. She has eaten half of a bagel and half of a scone. Hopefully she will make up for it tonight when we have our Valentine’s Day party all together.

She was taken off the IV hydration at night and some meds were changed to “as needed” with me given instructions for when to give them. It is so exciting to see her doing so well! At this point, it is our hope that she will remain transfusion-free. We do not expect to have much to update over the weekend since Naomi is not due to the clinic until Monday.

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Day +30 – Biopsy!

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Today we are back at the clinic for Naomi’s first outpatient appt. First, she will have labs drawn. Then, we will wait for about 90 minutes. After that, she will see the Dr and have her biopsy done in the office as an outpatient procedure. It is done under general anesthesia. Usually, the process only takes about 20 minutes. It is very quick. Tonight, we will be joined by the Las Vegas Branch of our family and we can all celebrate Valentine’s Day together – all together for the first time in 37 days!

Happy Valentine’s Day!

1

Day of Freedom, Part 2

Lauryn, Malakye and I walked into the hospital and signed-in at the guest registration desk for what we hoped would be the last time.  Malakye and Lauryn look all calm and sweet here, but for the past 24 hours, they had been beside themselves with excitement.  They would be calm and mature for a moment and then they would start to get louder and louder.  It was actually very funny to watch.  It makes me smile to remember it because it shows how close the children are and how much they support each other.

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Entering the hospital on Day +27, hoping for Naomi to be discharged!

I called them the rescue team.  Malakye liked to say that Naomi was the damsel in distress in the third tower and he was her knight coming to rescue her.  I love that Micayah got to be her donor-hero and and Malakye her rescue-hero.

Lauryn was so excited to play dollhouses and swing with Naomi again.  She could not wait to explore the House together and play in the backyard.  I do not think I fully appreciated how hard it has been for Lauryn to lose Naomi as playmate and sister for the past 6 months.  There is so much more to be said about that, but I will sum it up by saying that I love how my girls are best friends.

The iPad Naomi has in her hands here was property of the hospital. ¬†It was attached to the bed and would be left behind when we left, hers to use while she was an inpatient. ¬†While there, she initially had her face practically glued to it playing Temple Run. ¬†Overtime, she played a few other strategy-type games, but eventually became bored by computer games. ¬†I thought it was interesting that she returned to playing Temple Run for the last 24 hours of her stay at COH. ¬†It seems she was filled with anxiety and needed that release. ¬†In a moment of silliness, I said that COH was the Temple and she was trying to run out of there, but the monkeys kept chasing her to keep her there…..

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After everything was packed and the iPad played for the last time, she was READY TO GO.  There is actually so much more to the story than that.

Her case manager came into the room and told me that Naomi’s final prescription was ready downstairs. ¬†We got permission to run down there while waiting for doctors to do final rounds. ¬†On our way down there, Naomi said that her legs were getting tired from walking too fast so we took it a bit slower while still rushing. ¬†We really wanted to be back in her room when the drs. started rounds. ¬†Her room was on the corner and was often first.

We easily got her meds and quickly returned to the room.  Upon entering the room, her discharge summary from the case manager was on my backpack.  Naomi thought that meant that we could leave NOW.  I told her that we still needed drs to round and for me to sign paperwork with the nurse.

Naomi sat on her bed, but around her the room had nothing personalized on it – no more of her pillowcases or blankets, decorations on the entertainment center, or pictures made by her on the wall… ¬†the lion was still on the window though because I could not erase it. ¬†Just the thought of doing so made me want to cry. ¬†We also left the flower garden we put on her window to the nurses’ station.

She tried to play games, but started to become very frustrated and whiny. ¬†She practically slammed the iPad down onto the bed and said, “When WILL the drs. do rounds?!? I WANT TO LEAVE!” ¬†The anticipation was clearly too much…. ¬†Thankfully, about 2 minutes later, while I was still trying to decide how to pass the time, the drs came around the corner and started to put their gowns and masks on. ¬†It was comical and made me chuckle. ¬†There we were with the wagon loaded, nothing of ours in the room, Naomi dressed to leave, and the drs. still wore their masks and gowns! ¬†They talked with us about her lab reports for the day and we ironed out final questions I had about her care at home. ¬†I was pleased to learn that they cancelled her Thursday clinic appt. and merged it with Friday’s biopsy appt. ¬†So, now we only need to go to the clinic on Friday and get both done at the same time giving us Wednesday AND Thursday OFF!

As they left, Naomi followed them out of the room. ¬†She danced around the nurses station a bit while I talked with the nurses and CL specialist. ¬†The CL Specialist came and sat with the children so that I could take the wagonload to the van and move the van closer. ¬†I heard her trying to get Naomi to dance with her. ¬†Naomi would not…. I think knowing anything is the “last” is too hard for her….

I left the wagon at the registration desk in the lobby, ran to the parking lot (my stamina really improved over these 33 days!), drove the van back to the front of the hospital and paid $4 to park in valet right out front.  Never before willing to spend $4 to park up front, I made many runs between the parking lot and hospital.  But now I wanted it parked close for Naomi.

After loading everything into the van, I returned the wagon to the registration desk and went back upstairs to Naomi’s room. ¬†I never entered the room though because Naomi was sitting on the rocking chair right outside her room. ¬†While we were preparing to leave, there was a Valentine’s Day party going on in the family room. ¬†The nurses and CL specialist kept trying to get us to go join. ¬†I was very willing since there were chair massages for moms! ¬†Malakye and Lauryn were also very willing because there was food. ¬†I asked if we should wait at the party for the nurse to sign paperwork, but Naomi flat out refused to go. ¬†I was disappointed because I could have really used that massage.

The CL Specialist had given Naomi the rest of her Beads of Courage. ¬†Naomi was hugging the bag that held them. ¬†She was also hugging her Merida bow and arrow. ¬†It was all so fitting… ¬†the Merida bow was the device by which she fired arrows at anyone and everyone who would walk into her room; it did not matter if you were there to clean the room, feed her, or play with her. ¬†Even her dr. got some arrows! ¬†As for the beads, she earned every single bead on that string with all she has endured; every needle poke, surgeries to install catheters, biopsies, being woken in the middle of the nights, having more meds added to her schedule, transfusions administered, chemo, being in isolation….

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On the rocking chair beside her door.

This picture of her in the rocking chair makes me cry because what happened here was so sad and powerful.  At this moment, it became ALL about her and helping her process leaving.  Her anticipation to leave was so great that she sat in the chair and did not know how to act.  The CL specialist was standing right there.  Her and I exchanged glances each knowing that Naomi was struggling a bit.  I asked Naomi if we should bead the last of her beads onto her string of courage.  No.  I asked if she wanted to dance with Joanne.  No.  I asked if we should take a walk to the playroom.  No.  I joked that I could still get my massage if we went to the family room.  No.

She started to cry hard.  Joanne went to find the nurse so I could sign the discharge papers and get out of there.  It was obvious that leaving was all that would help Naomi.  While she ran off, I picked Naomi up off the chair and sat back down on it with her in my arms.  I rocked her and whispered into her ear that all these things she was remembering helped her while she was here and it was ok to have enjoyed them.  I told her that she was getting better now and we could move ahead.  We did not need to make final rounds to the playroom, family room, or even look at her beads and talk about them.  I could see it was all too much for her right now.  It was incredibly heart-breaking.  She has been through so much and had been so strong, and finally she broke down.

The nurse came and we signed the forms very quickly. ¬†The nurse ran off to tell others that Naomi was leaving and all the nurses and doctors and specialists all formed a tunnel for her to run through. ¬†She sat on the rocking chair, around the corner from where they were forming a tunnel for her, and she still would not move. ¬†She just cried and buried her head into her knees. ¬†I tried to get her off the chair but she would not budge. ¬†I bent down and said, “This is the moment you have been waiting for months to happen. ¬†Your transplant is over and you are FREE.”

She looked up at me with her sweet face and said, “I don’t want see them at the tunnel because it will make me cry.” ¬†I told her that it was ok to cry because they had become friends and saying goodbye to friends is hard sometimes. ¬†I offered her my hand to run through the tunnel with her.

I never intended to run through the tunnel because I felt that this was her moment, but I am honored that she accepted my hand and shared that moment with me.  She finally smiled through her tears and walked around the corner towards the huge group of staff that gathered for her departure.  Malakye filmed the tunnel as best as he could while trying to take pictures with the other hand.  After she was through the tunnel, I could tell she was afraid to turn around and say goodbye.  She froze facing the door knowing they were all behind her.  I gently encouraged her to turn around and wave.  They flooded her with hugs.

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Once through the tunnel, she froze afraid to turn around and say goodbye.

As with any hospital stay, there are things that were discouraging and unpleasant. ¬†There were moments of frustration about policies, especially when it resulted in Naomi’s discomfort. ¬†But the nurses in Hemoc must love their jobs and the children they care for. ¬†I find it fascinating how many people stopped into her room within 24 hours of her discharge to wish her well and say goodbye.

I think she is special because she is my daughter. ¬†It is obvious that many others think she is special just because she is. ¬† ¬†On Wednesday, the day after her discharge, I had to call the nurses’ station for some clarification regarding the hydration that I administer to Naomi through her IV while she sleeps. ¬†Having talked to two nurses on that call, they both mentioned how much they liked having her as a patient and how they feel a loss with her having left and miss her. ¬†I can understand. ¬†Now that I have her “back” and am watching her play, I see how much I missed her while she was sick and transfusion dependent. ¬†I see how her illness changed her and I am seeing glimpses of her playfulness and childhood returning. ¬†I cannot wait for the day her Hickman catheter is removed…. that is the next big thing on my mental map. ¬†Then she will be just a child, again.

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Mail Time!

Naomi’s eyes lit up when she saw this hat.

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it was inside her first package to arrive at the House for us.

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She really likes both hats.

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She tried them both on and chose this one for today.
ūüôā

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8

Day of Freedom, Part 1

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Kristy drew this lion on the window of Naomi’s hospital room. Aaron captured this sunset photograph.

It is going to¬†take a few days, or maybe a few weeks, to write about Naomi’s discharge. It is hard to put into simple words such an event. Naomi’s transplant experience has made me realize why we humans tend to write books for therapy. In the blink of an eye, we experience so many emotions. In just one thought, a brief second, a flood of emotions are sparked. By writing these things out, I can fully see them, learn from them, re-experience the moment, and starting moving forward.

The day began with me saying goodbye to my Grandmother.  As usual after her visits, I helped her to curbside check-in, waited while they loaded her bags for her, hugged her tight, kissed her cheek and talked about when we hope to see her again.  Finally, I climbed into the vehicle to cry as I drove away.  She has always offered me unconditional love and support.  No matter what, I always know she will be there for me.  Now, she extended that love and support to my children for three weeks.

After taking my Grandmother to the airport, I went to Naomi’s room to see what the discharge plans were. It was not clear when she would be released, only that she would be signed out sometime that day. She was unhooked from her machine and we talked about how it was probably the last time she would have been on that machine. ¬†She smiled and nodded her head, but I could see apprehension on her face. ¬†At the time, I thought that maybe she was unsure if she would really be discharged, but in hindsight, she was processing things just like I was. ¬†We were both having mixed emotions about leaving. ¬†It meant that we could move forward and start her outpatient post-transplant treatment. ¬†But after spending so much time in that room, it was difficult to move forward, too. ¬†That moment passed.

Naomi got up and dressed and was bopping around fully of excitement.  She, Malakye and Lauryn were taking turns playing on the iPad as  I packed up the remaining things in her room: blankets, pillows, and books. I carefully packed her statue of Mary holding the Savior close to her chest. I stopped and thanked God that she has done as well as she has and prayed that He will allow me to continue to hold Naomi so close to my chest. I love that Naomi wants to cuddle all the time.

The children were laughing and getting loud.  I reminded them we needed to keep it more quiet.  The wagon I was loading with our things was right outside her door and as I put things into the wagon, their noise wafted into the hallway.  I thought that maybe their noise level would encourage the nurses to get us out of there sooner!

I boxed up the healing Willow Tree figurine from Nanny. I took a moment to thank God for my grandmother sacrificing her own life for three weeks to be with us. It was not always easy for her to be away from home. It was a difficult situation for all of us. The children did not always want to obey her. There were some brief communication issues that caused some times of frustration. On some days, my baby wanted me and only me, making Nanny feel useless to help.  At times, I needed help but did not want it.

Hospital restrictions had prohibited Caity from walking through the one door she most wanted to go through with me. Over the past 33 days, that door became a place of overwhelming emotion for me. It was the same door that later in the day became the source of freedom for Naomi, but as I walked through that door in the morning, I thought of Caity, and as I packed up the Willow Tree figure from Nanny, I again thought of that door, and Caity and my 75 year old Grandmother trying to calm her. ¬†The door to the pediatric unit and the Willow Tree figurine from Nanny will forever be connected in my mind. ¬†That door, throughout Naomi’s inpatient time period, was the source of Caitriona’s meltdowns. It was the place where I would pick up the phone, the nurse would see on the camera screen who was at the door, the lock would making a clicking sound when unlocked, and the light turn green letting me know I could come in. I would proceed through the door to go to Naomi’s room and the door would close behind me as the baby screamed for me. We did get smart and someone woul walk Cait in the stroller while I snuck through that door. ¬†But still, she knew that door was the one I went through and would want to go to the bathroom often just to walk past that door. ¬†Sometimes when I came back through the door, Caitriona would be happily playing and smiling. Other times, I could see by looking at Nanny’s face that Caitriona had been upset and wanting me the entire time I had been away. All these memories rushed through my brain in a moment when I picked up the Willow Tree figurine to pack it.

The last thing to pack was a plastic lion that I purchased at Target for $3. ¬†Looking like Aslan from the Narnia series, it was perfect to watch over the lioness from the top of her entertainment center. ¬†After tossing the lion into her clothing bag, I looked at the lion I had drawn on her window weeks earlier. ¬†I had attempted to draw a lion one day in a moment of desperation when nothing else would work. ¬†Little did I know at the time that my artwork would become a source of strength for us to look at when we needed courage to move on throughout the day. ¬†Looking at the drawing, I realized that we would be leaving with what matters most, Naomi’s improving health, but that leaving would not be as easy one might expect.

2

Day +26 – Uncertainty: It Ends As It Began

Day +26. February 10, 2014. 32nd night in room 3113.

It looks like the uncertainty of Naomi’s discharge is just like the situation we faced with the uncertainty of her admission. ¬†The common thread of this entire transplant process has had an underlying uncertainty – the postponements¬†(and here), the uncertainty of the driving to City of Hope not knowing if we would be admitted, even before that the uncertainty of whether or not we had a donor within the sibling pool. ¬†I realized this afternoon that I have certainly grown in patience throughout this process….. but I am ahead of myself.

The events of today have been up and down… I called to find out how she was doing and was told her ANC was 700 which was up from yesterday’s 400. ¬†I was happy for the increase.

However, when I arrived at the hospital and got a paper copy of her labs, I learned that her ANC was only 400 and her WBCs had fallen to 700.  I was devastated.  I realized that her discharge would likely be delayed.

The nurses said that isolation was reinstated, as yesterday, and that her discharge would likely be delayed.  Her RBCs had fallen enough that she needed a blood transfusion this morning, too.  We did go 11 days between transfusions this time.  That was the longest she went between transfusions since early in her diagnosis.

When the doctor on the floor did rounds, she told me that discharge would be delayed until later in the week, but definitely not Tuesday.  I had already accepted as much, but was disappointed and trying to figure out how to keep Lauryn and Malakye occupied in the hospital for the rest of the week.  They are already stir crazy.

I went to the House to pick-up Nanny, Lauryn and Malakye.  Upon returning, I learned that Naomi had been allowed out of the room!  They took her to group where she made me a really cute photo frame.  The Child Life Specialist had dropped off a mountain of beads for her Beads of Courage string.  

When I entered the room, Naomi told me that she overheard nurses talking about her saying that she was allowed to leave tomorrow.  I did not believe her and told her that she should not assume they were discussing her just because the conversation was held right outside her door.  

Just then, the nurse arrived to tell me that today’s doctor doing rounds came back to look for me but could not find me….. She had talked to our doctor, Dr. Pawlowska, and our doctor said that Naomi CAN be discharged tomorrow as long as her counts do not fall tonight. ¬†(She is being supported again, as her team believes they ended some supportive meds too early. ¬†So, since those meds were restarted on Sunday night, her labs did not have time to jump for Monday’s labs, but should be seen on Tuesday’s labs.)

AGH! So, the home health agency did not deliver today because they were told that we were not leaving tomorrow, and now we need to wait and see if 1) her counts do not fall, and 2) if the home health agency can deliver to us tomorrow.  When the nurses and I figured out and discussed all the IFs, ANDs, and BUTs, I just laughed.  I LAUGHED!  It was at that point that I realized that I have grown immensely in patience since the beginning of this process.

Tonight, I finished loading the van, Naomi said goodbye to Nanny who will fly back to PA early tomorrow morning, the children here in CA are all very excited about maybe sleeping in the same house tomorrow, and the children in NV are anxious to come join us this weekend. Aaron and I cannot wait to have all our children in one room together again!

After spending one night at the House, I have two things to say: 1) I can be very comfortable there for the remainder of Naomi’s treatment, and 2) My patience is going have to grow even more having all 8 of us in one master suite!

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