December 27th, 2015

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Here are a few pictures Ryan took as he was walking back to the Hospital. He had just picked up some sushi – to take back to enjoy with Addie as they celebrate his Birthday with sushi and football.

Things are going okay. Addie’s output did increase back up to 1800 ml’s. They reassure us that this disease is tricky – but that they will find all of the leaks and patch them. They also tell us that it can take longer than any of us want to see the effectiveness of each surgery.

Addie has had a tough couple of days – the day after surgery is trying, and Christmas was far from ideal. Today Ryan says she is doing better – you can always tell she is feeling better when she starts bossing Ryan around again.

I will be heading to Philadelphia later this week to be with Ryan and Addie. My mom will be coming here to Missoula to be with the crew. I look forward to being with them. Michal

 

December 23rd

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I just received a call from Ryan. He was with Addie and she was out of surgery. They found two more areas where there was significant leakage- and they felt they were able to patch the areas. Ryan says it appears that the output through the chest tube has decreased, The doctors were optimistic and felt there was significant progress. We will know more tomorrow, depending on the magnitude of output from her chest tube. The ultimate hope is that the output completely stops, but a significant decrease in output is also promising. Dr. Itkin will be gone for the next week and a half. Ryan and Addie will hold tight and heal – and possibly this could be Addie’s last procedure.

Before Addie went into procedure, Ryan and Addie went through all the pictures, posts and shares sending her love and goodness last night. Today when I spoke with Ryan and Addie before Addie went into procedure they were talkative, positive, and excited to be moving forward. Your love was felt –

We wait patiently for the next day, love to all, warmest wishes, Michal

December 22nd

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Here they are – the two people I miss most. Yesterday we had thought that Addie would be going in for another MR Lymphangiogram – however they decided to postpone until Wednesday. They are hoping that when they do the MR Lymphangiogram tomorrow they will see information that will allow them to go straight into surgery. Today they are planning for tomorrow. I am continually amazed at Addie and Ryan. Their strength, their stamina, their love, and their attitudes.

I had the thought that on Christmas Eve, at 8pm Mountain Time we could encourage all we knew to participate in lighting a candle and saying a prayer, singing a song, reading a poem, or mediating on healing, strength and love. I think we should do this TONIGHT – as Addie prepares to venture into another difficult day tomorrow – perhaps a concerted effort of love all at the same time will send angles and kisses reeling her way. I know prayers have been numerous – but tonight I thought it would be wonderful if we could all do one at the same time. So if it be a prayer, a song, a healing thought or a dance under the stars – please join us tonight at 8 as we send as much love, healing and strength Addie’s way.

Michal

Addie

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Addie and Ryan continue to hold strong at CHOP. Addie had the procedure done on Monday. On Wednesday, they did another MRL to see why her fluid output had not decreased. They found that the “patching” they had done on Monday was holding. It is now thought that the fluid may be leaking from somewhere else. Currently we are not sure what the next steps may be.

Fortunately Addie and Ryan are really good at having a good time. Between Ryan’s silliness and Addie’s orders – everyone remains in good spirits.

The rest of us are holding down the fort in Missoula, again being as patient as possible. Love, Hope, Prayers, Michal

The Procedure

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Hello Everyone,

I apologize for the late notice. I know everyone is anxious to hear how things went. Last Friday I was under the understanding that the imaging would be one day, and the surgery then scheduled. This weekend I found out that both would be done concurrent to one another. This entire procedure took place today- Addie was “under” for seven hours. After the imaging, they went straight to surgery. She had about three different places where fluid was leaking in, 2 near the shoulder and one coming from the abdomen area. Dr. Itkin said it took longer then he had hoped – but he felt that he was successful in filling the pockets where the leakage was occurring. It can be anywhere from 1-3 weeks before we may know if the procedure was successful. He says that sometimes it just takes a few days – and other times a few weeks.
Addie is doing okay. When I finally got to talk to Ryan around 6:30 pm- she was just waking up and having a difficult time dealing with the world – as you can imagine – after being under for 7 hours. Anyways – I will keep you updated as I hear more. We are so thankful that she made it safely through this long procedure – and pray and hope now for healing. Michal

 

Philadelphia

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Yesterday we all joined Addie in her room while we waited for the plane to arrive from Seattle to take her to CHOP, Children’s Hospital of Philadelphia.

Addie and Ryan flew out at 6 pm last night. After stoping in Wisconsin to refuel, they safely arrived in Philadelphia around 11:45. Addie will undergo a special MRI of the lymphatic system on Monday. This will allow us to see where the leaks are in the plural cavity of the lungs. The specialist there is optimistic that he can help Addie. Last week I contacted him, I was seeking advice from the LGDA support group- and his name came up. Addies conditions have not improved and her output has increased. After consulting with him and the doctors here in Missoula we decided it was time to make the move. We are very grateful that it worked out and that we were able to get Addie to CHOP. We are ever so grateful to the amazing staff at Community Medical Center – their care, their love, their advocacy. If I didn’t love my job so much at Target Range k-8, I probably would be seeking out employment on the Pediatric floor at Community. We are also very grateful to the doctors at Colorado Children’s Hospital who have continued to support us and communicate with us about Addie’s care, as well as the LGDA support group who has continued to provide me with information about their experiences allowing me to navigate what steps we should take and when.
Love to all, keep keeping us in your prayers – I will keep you updated.

Michal Farley

November 28th

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Thanksgiving was unique this year; we loaded up the food and went to the Hospital to celebrate. We take each day as it comes – patience. Addie’s situation is so unique – the solutions few. We continue to research options as well as seek support from others who have travelled this path themselves or with their child. There is no quick fix to Addie’s situation, and we have learned that patience is extremely important.

We are thankful that we got to spend Thanksgiving with Addie – and we are thankful that she is here in Missoula. We are thankful for smart doctors, patient nurses, resilient children, and for all the prayers and love that continues to be sent our way. Michal

Children’s Carnival for Addie Moser

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Wow, What an amazing wonderful event that was put on last night for Addie. Super special Thank You to Sierra Nicholls, Roots Acro Sports Center (what an amazing place), The Hellgate National Honor Society and Hellgate Knights for the Fight. The event was so well planned – and the staff at Roots Acro Sports Center, as well as the students who volunteered through Hellgate High School were kind, fun, and patient. I was extremely impressed.

And then there was all of you who came to support Addie and us – and to play with us. Again my heart if full, and I am confident that we will be able to navigate this strange disease and find solutions so that Addie can live a full life. Thank you, Michal

Community Medical Center

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Addie is holding her own at Community Medical Center – joking with the doctors (a successful prank- see first picture), and has more visitors coming in and out then one can keep track of – I have considered buying a guest book sign in. We are hopeful that things are beginning to move in the right direction. I can not be more grateful to the team of doctors and nurses that are helping us through this time. Addie’s spirits are up most of the time due to all of those, including you, that keep her in your thoughts and prayers. About a month ago, I was contacted by a student from Hellgate High School. She is a member of Hellgate National Honor Society and Hellgate Knights for the Fight, and she asked if she could organize an event to raise money to help us with medical expenses. Tonight the event is occurring – an event that seems to scream Addie’s name. An event that Addie would love to attend, a carnival: a zip line, photo booth, bake sale, a black light party, a cake walk, face paint, and a silent auction that is filled with awesome items and services. We would love to see you there – it is going to be so much fun. Tonight at Roots Acro Sports Center from 6-7:30, it is going to be awesome!

Until next time – love to all, Michal

 

November 4th

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We sit – patiently, waiting, waiting, waiting. Waiting for something, something that is going to show us that she is going to heal and get to come home. It will happen – but my patience has never been tested like this before – let alone Addie’s, an 11 yrs old fun, active, creative child.

This past weekend Addie’s older sister Aidan came and spent most of her time at the hospital – it brightened Addie’s world. Addie woke up in great spirits today and she cut my hair, did her math, and was visited by the recreation director at the hospital.

We love and adore the staff at Community Medical Center – they have gone above and beyond to take care of us, accommodate us, and educate us about all that is going on, and what the next steps may look like.

And we wait – we wait for the chyle out-put from her lungs to reduce and stop.

Love to all, Happy Fall