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Day +128

Back on her hands. Today she asked if she could do a cartwheel yet. I said sure. She had a moment of hesitation. Like a pause to question if she really could do it. Then, she said, “now?!? Like RIGHT NOW!” She reminded me that I said I would record her. So, she hustled me outside and……

cartwheels

This week was a bit of a roller coaster as she had a slight fever of high 99s, up to 100.2. She was also very tired one day, Tuesday actually. But she had no fever at all that night after putting her to bed early and woke doing much better on Wednesday. I think the dryness here and wind has really irritated her sinuses this week. The wind has been merciless, uprooting the neighbor’s tree and blocking the other neighbor’s driveway for two days. Naomi has improved with the bedroom window closed and a humidifier and diffuser back on while she sleeps. I have to admit to wondering if a mask isn’t advisable but her dr assures me that she does not need one. Trusting her new marrow to do what it was supposed to do was quite difficult for me. We are grateful that it did exactly that though. Micayah said “I sent a good army her way.” Him being a military and history student, this really makes me smile. ūüôā

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Day +124 a Clinic Appt

There was plenty of good news during our trip to COH today. Naomi had her first blood test without a Broviac. She hopped right into the lab chair, put down the arm of it and extended her right arm out for the nurse. No hesitation. No fear. When the nurse put the butterfly into her vein, she did not blink and watched the entire process. I marveled at how brave she was throughout the blood draw. The nurse complimented her as well.

Our visit with the doctor was also amazing. All of Naomi’s counts are soaring.
WBC 7.7!
ANC 6.7!
Platelets 285,000!
RBC 3.16!
Hemoglobin 10.8!

Her nutrient, kidney and liver levels are all fantastic, too. She is free to swim now since four days have passed since her surgery to remove the Broviac. We do not return to COH until June 16! In the interim, we will visit her hematologist here at home. Her cyclosporine level was a little low and I might receive a call to increase her dose. She wrinkled her nose about that news. The cyclosporine we get here in Vegas is way more stinky than what we got in CA and she is sure to remind me of that often as she gags it down.

Today was a very, very good day!

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Day +120 – Line Gone!

Naomi’s surgery went as smoothly as we could hope. It took only about 20 minutes for the dr to come to the waiting room to get me. He was able to remove the line through the incision point already there and did not need to make any additional incisions. Her stitches are self dissolving and under the skin. So all that is visible on the surface are two very small white bandages that will fall off on their own.

She can shower tomorrow. Baths and swimming is allowed on Monday. Seeing as how she is outside this evening wanting to go play baseball at the park or ride her bike, I do not see a point at which I will need to be filling her prescription for the pain meds.

We return to City of Hope on Monday. Then, we will be going down to monthly trips there.

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Ready To Go!

Naomi was awake before me and excited to leave. So we were here a little early. Of course the hospital ran a bit late. But, here she is, finally ready to go! It should be a quick removal. She is very anxious to eat and drink! And do gymnastics. ūüėČ

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Surgery Scheduled

On Thursday, May 15, 2014, 120 Days after Naomi’s transplant, she will be getting her Broviac line removed.

I could see her trying to process it today. ¬†She was definitely quieter and little apprehensive about it all while driving home from the appt. this morning. ¬†I asked her twice if she was ok. ¬†Her reply at one point was, “it will be ok to have to be poked for a blood draw because I can do gymnastics again.”

Dear girl. ¬†To have such an expanded vocabulary at age 6. ¬†Poked. ¬†Blood draw. ¬†Broviac line. ¬†Port. ¬†Transfusions. ¬†Platelets. ¬†Neutrophils. ¬†Leukocytes. ¬†Immune Suppressants. ¬†Antifungals. ¬†Bone Marrow. ¬†Chimerism Report…. Critical Illness.

She was also bit tentative about the discussion over dinner.  Tonight, the topic of concern was the incision required to remove the line and the stitches to close the hole.  On the other hand, she is very excited to have only two nights remaining to sleep with the line, and cannot wait to splash in a bathtub and completely immerse herself in the shower.  I think I will buy her a basket of bubble bath and some bath toys to celebrate.

I think that part of me is still trying to wrap my brain around the fact that she had (has?) a critical illness and the only CURE available for her¬†has sat¬†across the table from her at dinner, carried her on his back, and read her books since the day she was born. ¬†I can vividly remember him reading her Black Beauty in 2007 when she was born and he was 6 years old. ¬†While Lauryn was down for naps, Micayah would sit on the floor and read out loud while Malakye played with toys and Naomi fell asleep. ¬†Just 6 years later….. he gave her a new start at life. ¬†It is CRAZY to think about! ¬†Life sure is wild.

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As to the status of her diagnosis of Aplastic Anemia…. on her lab reports, it says “Pending Review.” ¬†It has been that way for quite a while now. ¬†I would have to go back in the charts to determine when exactly that became her status rather than “Active.” ¬†Maybe it doesn’t matter. ¬†I think it must since it is on the forms.

The meeting with the surgeon was very positive. ¬†He last saw Naomi in December when he put her Broviac in place. ¬†One of the first things he said was how good she looked. ¬†He was impressed with her short list of meds and the fact that she will not be on meds for life. ¬†He apologized for his ignorance on the matter of bone marrow transplants and how long the anti-rejection med was necessary when asking questions. ¬†That is main¬†reason I wanted to go back to him for the removal surgery – he is a real, honest, trustworthy human being, easy to talk with, sits down with his patients and takes time to ask questions about – and admit – things he does not know. ¬†As he was leaving the office, he poked his head back around the corner and said, “it was good to see you again. ¬†Do you know how miraculous she is?”

Yes.  Yes, I do.  Thank God for miracles.

 

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Last Dressing Change? – Day +117

We think that tonight was our last dressing change! ¬†Tomorrow at 11am we meet with the Pediatric Surgeon who put Naomi’s Broviac line in place. ¬†He will examine the line and schedule it to be removed, hopefully later this week. ¬†We return to COH next Monday and the line is supposed to be out by then.

Naomi continues to become more acclimated to “normal” life. ¬†Tonight, we went to the park after Aaron came home from work. ¬†Some of the children walked down, and others rode bikes. ¬†Once there, we played a game of baseball. ¬†It was so much fun to have all of us playing together.

We continue to work through the emotional healing aspect of all that has happened. ¬†As expected, some children have anger towards Naomi, or more accurately towards her illness. ¬†This seeps out little by little, like a power cooker that needs adjusted and reset. ¬†I know that since her illness caused 6 full months of trauma that it will take at least that long for us to process all the events of those 6 months. ¬†I also know that emotional healing takes a lifetime and that it will likely require us all to continue to have patience with each other and revisit repeatedly what being a family means…. None of us asked to be in this situation, but together is how we have to deal with it. ¬†Some days will be better and other days will not. ¬†That is just how life is for everyone, illness or not. ¬†The children are learning a lot about character and taking difficult circumstances in life as best as we can. ¬†Some day, we will all look back at 2013-2014 as a year of tremendous growth for us all.

As we are began our 7th week of school for the 2013-2014 school year (because we started over upon arriving home at the end of March), Naomi is finally “unhospitalized” enough that she self starts in the morning with her independent work and willing completes ALL of her assignments for the day. ¬†This took a lot of patience on my part, as there were quite a few weeks where she would refuse to do any work, pout through the work she did complete, and sometimes just run away to another room to play while in the middle of a lesson. ¬†I knew she needed time to heal mentally and emotionally to be ready to learn. ¬†It was a lot like the “unschooling” process, so I have decided to call it being “unhospitalized” enough to be ready to move forward with life. ¬†But now, she is flying through her daily assignments and that thrills me!

Each day has some struggles, but we are definitely moving ahead. ¬†She continues to be well, with a lot of energy, and fairly quick to apologize when she realizes her “pychosporine” has gotten the best of her. ¬†We have been told that she will be on cyclosporine through the year. ¬†I hate that medicine.

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Monday’s Update! – Day +110!

It was the longest we ever sat waiting for labs, but well worth the trip! After running an hour late for labs, they moved us right from the lab chair to the dr’s office for our scheduled appt.

Our visit with Dr. Pawlowska began with a physical exam and some chit chat about Naomi’s progress including her huge increase in appetite, high energy levels, celebration of Day 100, daily bike riding, concentration in homeschool, and a hike up a mountainside and rock climbing. Dr. Pawlowska jumped way ahead of me and asked what we should do about the line. I told her that I was going to ask her the same question today.

She said that it was time to take it out and that I could choose to have that done at COH or at home. I elected to do it at home with Dr. Fiore who placed it back in December. I really like him and trust him.

At that point, the conversation turned to include Dr. Rashid in Vegas. She will help us get the line removal scheduled, hopefully within the next two weeks.

On May 19, we return to COH to see Dr. Pawlowska again. After that appt, we will only make monthly trips to COH, seeing Dr. Rashid during the in-between period. It will work that Naomi will see a doctor and have labs drawn every two weeks, but each one only once every 4 weeks. Unfortunately, she will need poked for these every two week blood draws, but, as Dr. Pawlowska said, she can play without the line being in the way and swim over the summer. Removing the line also removes the largest risk for infection.

Dr. Pawlowska also allowed me time to discuss my fears and paranoia. She assured me that Naomi’s engraftment is “really, very excellent” and that Naomi does NOT need to wear masks anymore. The doctor encouraged me and said that I do well letting Naomi play outside and be as normal as I do. She believes that helps recovery. The tendency is for us parents to shelter. In fear, we erect walls around the child and prevent them and ourselves from moving forward.

After our talk yesterday, I have decided to live each day to its fullest and try not to be overcome by fear. Naomi has had so much prayer and blessings that we cannot help but be thankful.

Our drive home last night ended up being close to 6 hours long due to the bridge over I15 that caught on fire and then collapsed. We detoured around it. I have never seen such a scene. South of the bridge, traffic crawled for about 20 miles and the sides of the road looked like a parking lot. In some areas, cars were driving over the grass to get onto a dirt road beside the highway. I was able to get behind a fire truck and cruise easily for about 5 miles in the left lane while the four lanes beside me went absolutely no where. Then, I had to stop as I approached the hill and saw no one moving anywhere. After watching three more fire trucks and a dump truck pass, I went online while sitting at a complete stop, and read about the collapsed bridge. I was fortunate that there was an emergency vehicle turn around spot about 200 yards ahead. I exited the northbound highway by doing a u-turn there. It allowed me to go south to route 138 and get onto a detour route. I was quite surprised more people were not doing the same. My legs were so sore from the long drive. I will be glad to make it only every 4 weeks in the future!

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Day +109

We ignored that tomorrow is Monday and lived our weekend to its fullest. The kids played outside. Us parents got in some much needed down time. We all enjoyed the weekend.

And then night came. Lauryn and Naomi packed clothes to go to CA. Three changes of clothes and a pair of pajamas -“just in case.” I have only one set of clothes, for the same reason.

As I prepared my stuff by the door, Caitriona followed me around…..
“Where you going, Mama?”
To see Naomi’s doctor.
“Naomi sick?”
No. She is not sick. But we have to see her doctor because it is time for that.
“You come back? She come back?”
Yes, sweetheart. We will be back. (Lump forming in my throat. HOW do I guarantee that? I can never be sure myself.)
“Oh, Naomi will get better and you will be back.”
Yes, Caitriona. Naomi IS getting better and I WILL be back. (She is so smart for 2 years old! Look at her faith. We have spent a lot of time talking about how when I leave I will come back.)
“You be back Friday.”
No! I should be back MONDAY, Cait. Tomorrow. I should leave AND come back tomorrow.
“I miss you, Mama.”
The tears were flowing.

Going to City of Hope has such a mixed effect on us. It is like going home in some strange way. There is familiarity. But there is comfort in the fact that her doctors are among the world leaders in Naomi’s illness. Yet, it is like revisiting a crime scene. There were so many emotions that happened there. I always think back to the day she was finally discharged and free. To have had such an amazing recovery since that day has been a huge blessing. I feel thankful for these days, weeks, MONTHS of improving health.

But my conversation tonight with Cait was hard. How did I leave home for months? How did I leave home for days? May God spare us from any further admissions or illness. I pray for safe travels, good counts, a possible order to remove the catheter, and to come home right away. May He continue to Bless Naomi with energy, happiness and improving health.

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Unpacking

Earlier this week, I stumbled across a bag in the laundry room. It was full of toys, coloring books/crayons and books for Caitriona. We used the bag during trips to the hospital for outpatient days when we lived at the RMH and the hotel. Seeing the toys brought me to tears because the only place she had ever played with those toys was during difficult moments. It is amazing how quickly I can tear up. But it has made me realize how far we have come. From two outpatient appointments each week, to just two a month!

I still have a bag packed in case of an emergency. I take a small truckload with me to CA each time we have an appt. I am always afraid that something might cause us to have to stay. Naomi is aware of that, too, and she and I always hug and celebrate when we have decent counts and are able to return home. It gives us a reason to celebrate every day….. Even the difficult ones.

We are finding that being “normal” is not easy. The emotions of the past few months are oozing out of different people every day. Being forgiving, gentle, understanding, compassionate, and allowing everyone to express frustrations and anger is important and necessary…… And time-consuming.

One morning this week, while snuggling together, Niamh was telling me a story that made my jaw drop and a lump form in my throat. It was about a little boy who had a sick sister. The girl got sick by touching things and putting her fingers in her mouth. She was so sick that her mom took her away where she would get medicine that would make her lose her hair, and then die. The boy was scared about his sister dying and thought that since his mom was taking her sister that his mom might also lose her hair and die.

This little story, presented to me by Niamh who was pretending to read to me was so heartbreaking. It shows the depth of her pain and the effect of Naomi’s illness, and my separation from her.

When I think of Naomi’s illness in terms of duration, I sometimes think that we had it “good” because Naomi had her transplant within 4 months of being diagnosed and we did not have years of her being transfusion dependent, or waiting for a donor.

But, I do believe that all things work together for good, and God knew exactly how much our family could take. With 6 young children, we did not have the patience to wait years, or even a year. Naomi’s being sick for 6 months was still 1/8 of Niamh’s life. 1/4 of Caitriona’s life. To a child, that is an eternity…. Likely some of Niamh’s first memories will be when Naomi was sick. What a sad series of events to have been living through when coming to the age of awareness.

This past week, I resumed my work out of the house. It was a bit earlier than I thought I would return, but the timing was right for the business and it has been good for me for to be involved in the move and upcoming grand opening. The timing for me personally was not great because this was also the first week that Aaron was in the office for five straight days. A few nights, I left as soon as he arrived, but we made it work! It has enabled Caitriona to say goodbye and experience me coming back. She has handled the transition very well and is starting to understand that when I leave, I will come back. We have had talks about it, and she can prepare for it. Then, she loves when I come home at night.

I had a rough time leaving the first day and felt very guilty for having a normal life. I felt like maybe it was too soon; shouldn’t I stay home longer?; do I really belong going back, or should I just stay home with the kids permanently? But I have a gift, and a love for what I do, and a piece of me is missing without it. So, tomorrow, I will gladly attend the Grand Opening of the new Well Rounded Momma Wellness and Maternity Center. I look forward to attending births as a doula and student midwife, again. I cannot wait to have prenatal appointments next week!

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Party Time

This post was written a few days to and sat around waiting to be edited.

The plan for Day 100, April 25, 2014, was to have a picnic at the park near our house. ¬†Two other families were supposed to join us there and it would be a surprise for Naomi. ¬†Niamh was onto it all day and was questioning my activities all day long. ¬†She saw me sneak the cake into the van and I had to lie and tell her it was for a friend. ¬†It was, really, we WERE sharing the cake with said friend that evening! ¬†Niamh also made sure to ask why I was making Naomi’s favorite food for said friend that night – the story was that we were taking dinner to a friend that night and sloppy joes were easy.

On our way out the door, as we were supposedly going to deliver a meal to a friend, I needed the children to cooperate because some of them wanted to stay at home until I got back. ¬†I had to get cooperation… FAST. ¬†So, I whispered to Lauryn, “Go upstairs and comb your hair, put earrings in your ears, and change into your Day 100 t-shirt because we have a surprise party to go to.” ¬†She smiled, started giggling and sprinted upstairs. ¬†She then proceeded to help me get Cait and Niamh ready and into the van. ¬†She was giggling the whole while and the whole drive.

I also had to tell Malakye, “Go change your shirt to your day 100 t-shirt because we need to leave now for Naomi’s surprise party.” ¬†He started pumping his fists and his smile was as bright¬†as the sun.

The weather had turned bad with high winds that would have left us picking cake out of our hair.  Another friend of ours, not the one who was getting the cake, was sweet enough to offer their home for all 22 of us to gather so that we could move the party inside.  Their home was perfect with adequate space for the children to play and the adults to chatter.  

When we arrived, they opened the door and yelled, “surprise!” ¬†Aaron had gone there directly from work and arrived before us. ¬†Caitriona was scared by this and clung to me for about 30 minutes before realizing that playing was a much better alternative. ¬†Naomi was surprised and smiled BIG all night, coming over to hug me often, running around the house playing with friends, and being so glad to be somewhere other than home or a hospital. ¬†Sometimes we would explore the house together; we played hide and seek, too. ¬†Naomi¬†choose to wear her mask, even though she was told that she did not need it after day 100 anymore. ¬†I appreciate her maturity to do what she can to stay healthy. ¬†Mostly, the children played and the adults chatted. ¬†It was wonderful for all of us to not be isolated for the evening!

Although at Day 100 and she was told she could remove her mask, she is still on immunosuppressants.  As long as she is on cyclosporine, she will be at increased risk for infection/illness.  It is hard to know what is safe for her to do and where to draw the line.  At this point, it is still too risky to return to gymnastics due to the bacteria and fungi on the mats, and the fact that she has a catheter in her chest, still.  We will continue to hike and climb to help her build her strength.  She also spends quite a bit of time on her bike.  I would say that she is rather active.  It is rare to see her laying down, resting, etc.  In fact, at quiet time, when everyone MUST rest for an hour, she reads that whole hour, if I can manage to convince her to stay still at all!

We have another week before we return to City of Hope. ¬†I will inquire as to when we might expect her catheter to be able to be removed. ¬†With her chimerism test coming back so high, her transplant is obviously doing well. ¬†To remove her catheter would reduce risk of infection, eliminate dressing changes, and mean that we would not need to do daily line maintenance. ¬†It would mean that she would need to be stuck with a needle every time she has an appt……

We are very anxious to move forward to more normalcy… but that risk of illness due to a weakened immune system hangs overhead. ¬†We have to constantly weigh risks and benefits, and I am afraid to admit that I evaluate everyone in terms of potential risk to our health. ¬†When I am in a room with someone who is coughing, I jump and look for an exit. ¬†Seriously. ¬†When I hear someone sneeze, I make a note of that and monitor it to see if they sneeze repeatedly.

On Saturday, I attended a class for my Midwifery Program. ¬†I noticed that whenever the instructor said “fever,” or “bleeding,” I thought of Naomi’s bruised legs while she was very sick and her soaring high temperatures right before she was diagnosed, and my right eye twitched. ¬†I had recognized this issue over the past few days prior, too. ¬†So, I took out some essential oils and dabbed it on the temple next to the twitching eye. ¬†It happened three times and I applied the oils those three times. ¬†Then, the twitching stopped. ¬†On Sunday, Naomi fell off her bike and got a brush burn. ¬†We had to clean it so that it did not get infected. ¬†Seeing her injured, my eye started twitching. ¬†Some of you may remember the bruise Naomi got on Christmas Eve 2013 when her platelets dropped severely and she needed a transfusion the day after Christmas. ¬†The bruise came from her last dose of Neupogen. ¬†After that dose, her doctor decided that since it was not helping anyway and only caused further bruising to give the shot, then it would be stopped. ¬†Well, 4 months later, the staining for that bruise is STILL on her leg.

Most days fly by doing homeschool, playing, and living and loving life.  We are all enjoying as much time together as we can get.  I am returning to the midwifery center part time this week and really looking forward to it.  I love that sometimes we realize we are 30 minutes late for meds.  I love that Naomi knows how to gather her meds and the materials she needs for flushing her line each day.  I am so amazed by her strength, discipline and endurance.  She is truly brave!