Nate’s Updates

Someone asked me to post Nate’s updates from the UCaring site on this blog, since the other site is closed. So, here they are.

Feb. 3. A message from Nate:

Hello everyone.

I wanted to take some time to update everyone on my girls. I have heard we are getting close if not to our 100,000 person goal of prayer, and I know everyone is still getting more people in prayer for us.

Liberty Sunshine has been holding her own this week. She is taking her feedings well, she is passing them great, and she is growing. Amy and I can visually see her body changing. Her bleed has slightly increased, but still not into her brain, and the doctors will not let it get that way. She is being monitored every 2-3 days on it, so if it was really bad, I would assume they would do it more frequently. If her bleed doesn’t subside, they are going to relieve it by inserting a needle in the side and draining it, as well as placing a small tube to access this. If they have to do this, then Liberty will have to have it remain in her vessel for life, and as she gets older, she will have to have it maintained with linger tubes as she grows. It is similar to people who have stints put in their arteries, to or event attacks, etc… The prayer for her is healing of this, because it does set her up for procedures and maintenance for a time to come in her life. Liberty’s lung has healed, and the air pocket is gone. So, if anyone needed reassurance their prayer is heard, this is it. I know we can prove to the doctors He hears us regarding her blood vessels too.

Libby is a sweet little girl. She is quiet, with a nice head of black hair coming in. Amy held her first last week, and I first kissed her back and she would fuss very lightly. The second time we held her, I did it again, and I saw her not fuss, but open her eyes and look at me to see what it was. I held her the third time, and she lay across my chest and lay her hand flat along my chest, feeling me. She found my chest hair, and would continually wrap her hand around it. I kissed her back when she was put back in her incubator, and she let out a soft little noise, maybe equal to a grunt of content. I held her a second time, and she settles in and does the same. She knows who I am now, my smell, my chest, and I believe she will connect my beard with her memory. She knows her mom very well, and settles in on her as if she is meant to lay in her for weeks, resting and matching the rhythms of heartbeat and breathing. Her eyes are blue, and her hands and feet are big, with long arms and long legs. Its frightening as a father now to think my little Libby will be a tall and skinny woman some day, with blue eyes and she will carry my wife’s beauty too.

Prairie is maintaining her life well too. Her brain scans have been good, and she holds no signs she will have limitations in her brain function. She has a small bleed that was sustained since birth. The doctors say it is so slight, it happens to many babies. They say there is no connection to the minute bleed she has to anything that will develop in her time. It is amazing that her little head has been brought through this so successfully. I have a habit of shortening names, so I have been calling prairie prayer. One night, while looking at her little frame I saw the painting in my eyes of the little girl and the dog leaning on the bed with their hands folded, praying before sleep. I believe it’s a Norman Rockwell. Prayer needs prayer for her bowels. Her intestines have not commenced to operating,, and she’s received medications. We are waiting to see how they work. Once she is able to get her bowels working, she can receive milk feedings. If this doesn’t happen, prayer may have a long road of many years of tube feedings. I have seen her use some of her bowel muscles, as she is able to push a suppository right out when the nurses insert it. Prayer has the ability, the stomach and intestines just need to catch up and react.

In my opinion, Prairieis tougher than Libby. She fights the nurses when they need to work on her. The closes her eyes and scrunched her forehead really tight, and pushes and seats at them. She has a look of annoyance when she doesn’t want to be bothered. Prairie is so small, she is so delicate, but so much tougher. She was born with a concrete wall in front of her, but I believe she has a little jack hammer somewhere in her and she’s hammering the wall every day. It seems as if her report every day is, “she’s amazingly good. No new surprises, we just need her to poop.” I know Prairie will grow up to be one of those beautiful women that hold no fear, have an inner strength and a desire for adventure. Prairie will be the type of woman who will say to me, “dad, I am gonna hike the Appalachian trail this summer, can you pick me up when it’s time to go back to school?” I will have to say yes, because if not, she will fight and bicker with me until I give in.

Lastly, is Amy. Today we have a plan for the future. Amy will begin a very heavy regiment of chemotherapy a week from today. The doctors have given her blood, have given her iron, have maintained her pain, and also given her hope for help. A team has met and come up with a chemo plan, as well as subsequent surgery at a later time. Her battle begins everyone. Her doctor said she can take this, because she has just experienced childbirth, which is harder than anything in his opinion. He has one thing to say about her outlook. He can treat, he can be trusted to treat, he can help, but her success and outcome is up to God. He said he truly believes that in all his cases. There is no timeframe for this diagnosis of how long you live or die. There is only treatment. God knows when He wants to call you in. I believe that as well.

The doctor has studied pregnant women and cancer for over 20 years, and he developed these treatments. If we trust him, he assured us he can help. This is the problem with cancer. There is no cure for cancer, no matter what type. Any patient can become cancer free, but they still live in hope it won’t re occur, they still have the chance it can show up somewhere else or at a later time. My heart goes out to everyone with any type of cancer. The constant nagging of fear which comes with diagnosis must be hard for all to bear.

I can say one thing to everyone who is praying. Many know who I am, they know what has happened to me in my life. I had 5 surgeries prior to my teenage years and was left short of digestive parts. At 18, I was burned with grease and spent a month at Massachusetts General Hospital with 1/5 of my body in blisters and burns. At 20, my hair and scalp was taken by a machine while working a job I had spent most of my life doing, and still do to this day. I have seen and felt physical pain. I have also seen other people and their pain. I remember the burn ward at MGH, and a patient had moved in next to me who had an asphalt shoot break off a dump truck. It burned his back to the bare bones. He was screaming and made tons of noise. I was at the end of my treatment, so I asked my nurse about him. She told me they had given him all the pain meds a human can take without a threat to their life. I walked over and talked to him, and could just see he was screaming because of what was in his head, not the damage to his body.

Amy is not that way. The night she had her c section, she remained as calm as if she were getting an x ray. She kept her eyes open and they were soft. I watched her face as the 2 babies let out their small cries. She has kept a smile on her face when others would have been nasty and angry. She floats high above any depression, and keeps a faith about her that seems to affect all her nurses and doctors. She is visited often by nurses from her past weeks at labor and delivery because they have grown so fond of her. I suppose I am relating her to that guy who was burned. Amy just has it. She has the ability to do this, to fight it and come out of it whole. I relayed some of my past to others not to try and make this personalized or take from what is going on, but merely to have people know I do know what I am talking about here. In the end of my ordeals, I can count my time on an operating table in days, not hours. She will be able to do much of the same. Her battle will be harder I feel than any of my understanding. All of the people praying need to know though, that she has the mind and capability for this.

I had heard before from people who have been married for some time: marriage after a while loses its surprises. It loses its romance, or the initial spark. I have been married 6 years to Amy, and we have both seen the pulse of marriage and living together reside at times to a comfort level. We have seen both of us remain in a state of being caught up in our work, our projects, unable to take that vacation or explore that hidden wilderness. We’ve been in the state of routine, with no complaints. But, there are surprises at any time in a marriage. There are those moments when the light bulb goes off and you say, “my word, I never thought I’d feel this way about you. How did life get to this to show me a new way to feel this?” I did just that this week. I sat and watched my wife on Monday, and I have discovered that my wife is the strongest person I have ever known. I love the fact that He shows you these things even in what can be the hardest times. So, everyone needs to continue praying. Her strength comes from God and her faith. She will tell all of you this.

Lastly, I want to thank each and every name here, every name in every church, and every town that is praying, giving, helping, and doing more than we ever imagined. It has without a doubt changed Amy and I both in a way we hadn’t expected.

Feb. 8. An update from Nate:

To everyone who has been part of this in prayer and giving:

I wanted to take a minute to write this to everyone connected through this u share, as well as Facebook and other forms of social media. I apologize. My wife and I don’t have a Facebook account, we don’t have any social media outlets.

Liberty sunshine underwent surgery Saturday. She needed a small access put into her head to drain some blood and proteins that were building up surrounding the brain. On Friday evening, Amy, my father, and I were visiting her, and she seemed incredibly tired. Her breathing was labored at times, and she was very quiet. Her procedure Saturday went well, she remained very stable and the port was introduced and drained. I was able to visit with her Saturday during the day, and planned an evening visit with Amy. Amy decided she was exhausted, as was I, so we planned an early visit Sunday to the girls.

Late Saturday night, Libby began to have seizures. Her heartbeat had dropped to 40 b.p.m at one time very briefly, and she was revived and stabilized. I awoke to the phone, and was told she was quiet and stable, but it was a concern. At about 2 am, my wife and I sat together and talked of libby, and prayed together. I received another call at 6 am, and was told she was undergoing EKG testing. Amy and I went in this morning, and we spent time with our girls.

Libby remained stable and quiet throughout most of the day. Amy and I commented on the beautiful sunny day, the Lords day, and in our prayers together we had decided if Libby’s condition meant she was drifting away, we were prepared and peaceful about her. We met with doctors, and they had stated a series of tests Monday and Tuesday would come to determine her condition, to see how intact her brain was after these repeated seizures. We expressed our feelings of peace for her, and the understanding if she was too tired to carry on we had prepared ourselves, but our desire was to have our little girl in this world for years to come. The doctors listened to us, and we prepared for the upcoming days to determine what needed to be done for her.

At 2:45 this afternoon, Libby went into respiratory and subsequently a cardiac arrest. The doctors performed exceptionally with her, and an entire team remained with her. Amy and I were able to be by her side, and after 10 minutes of watching her heart rate and breathing climb and fall, the doctors put her on respiratory support for us. She was then placed in my wife’s arms, and we were able to sit with her and hold her while she slowly drifted away. Amy was able to tell her how much she loved her, and that Jesus was waiting for her and she should go and be at peace, with no more pain. Amy let me hold Libby, and I asked that her breathing tubes be removed, as it was time. I told liberty that I was so proud of her. She fought so hard. She took every test and poke, every prod and every movement from foreign hands without a cry. She drifted in and out of systematic breathing her last 2 days with a strength grown men could not match. I told her I loved her so much, and she was just nothing more than perfect. I selfishly enjoyed the last moment with my daughter and no tubes in her nose or mouth, no lines attached to her.

Liberty Sunshine’s breathing stopped shortly thereafter. Amy held her once again in the end, and felt her body go still. Libby’s perfect heart beat for about 10 minutes thereafter, with enough time for Amy’s mother to hold her for the first time, and give her her full attention and love as she went to sleep.

I am writing this and expressing how incredible this situation was for us. How incredibly horrifying and how incredibly amazing it was. I am guilty of all of this today. I prayed to God this afternoon after meeting with the doctors, and I asked Him to either give my little girl healing today, or take her to heaven today. God answered prayer for me today. I can count on one hand where I feel He has given me an immediate answer to my prayer. This is one of the few.

The reason this is amazing is because after Amy’s family left the hospital and brought her home, I remained to take care of whatever I was needed for. I sat with a doctor and the doctor told me there was no explanation for what happened to Libby. They said she was stable, medicated for seizures, and they believed she would remain this way. The doctors want to perform an autopsy to find out what exactly happened to her. I told the doctor as she clearly isn’t a believer, that this was an answer to prayer. Prayer for one outcome or the other. A demand from God to show the grace we all know he has. Today what the doctor witnessed was God saving my little girl from a lifetime of probable pain and suffering, of dependence on devices and people. This was a real possibility for her after her seizures. I told my wife after we had had the discussion with the doctors this morning that we have just put her in Gods hands, to do what he must. God answered today. We are both heartbroken for our little girl, but we are also both so filled with peace of where she is at this moment. I don’t feel I need to explain why today was also horrifying. I am new to being a father, and I am beginning to feel it is the hardest role I have ever had to fill.

I thank everyone for all their prayers and their support. The donations, the words, the cards in the mail, everything. It means so much to us to know there are thousands of people out there who will soon read this and be saddened, but also in the same mix of emotion, be joyful for Liberty Sunshine and her new, perfect body, life and eternity of nothing but pure joy.

This update for everyone is only going to be about Libby, I will try and keep people informed of my other girls in time. Tonight, my other 2 girls are safe, stable, and quiet. Nate
Feb. 13
At 2:00 this morning, I awoke to a phone call from the n.i.c.u doctor on for the evening. The phone call was half expected, although I held hope it would not come in the middle of the night. Prairie had had a few rough days. There were a few days of uncertainty with her regarding many things, all complicated, but all so simple. On Thursday evening, prairie began to struggle with the lack of movement in her bowel. Her little belly had begun to inflate, and she had become so uncomfortable. Amy had received her first treatment the day before, and was ready to join me for a visit, but I looked at her and told her she should rest and come with me Friday morning instead. I arrived to find I had decisions to make regarding prairie. Thursday night, I was explained of a procedure for prairie to cut two holes into her belly, and place a drain tube which would drain excess air and or fluid from her body, to deflate her belly and make her comfortable. I listened, and was given three options. I could agree to the procedure. I could have the doctors leave her be and see what prairie could do on her own, or I could begin a care and comfort regimen. I felt at the moment the drain would give prairie a chance for us to continue to see if she could make her bowels move. The consent form was handed to me, and it was noted this was a drain for the body cavity alone, not any internal organs or anything, but would leave her with a 60% chance she would need a colectomy later in life. I stared at the document, and I saw my worst fears before me. You see, when I was a child, I suffered from a disease which left me fighting for life, and had to undergo an ileostomy and received a reversal after I healed. Although I am completely healed, the ordeal is horrific for all children who suffer these. I saw on that paper the one fear that gripped me before Amy and I began to try for children. I saw that I was signing my little girl up for a better chance than none she would go through what I went through. As my fears raced through my head, I was remembered of my wife’s words when we talked of this situation in the past, and what would we do. Amy said years before these moments, “I believe, if your child is in a state of such deep distress, you will act for the child, no matter what your fears are. It’s easy to say, ‘I won’t let them cut our child up, I won’t let him or her suffer,’ when sitting in this moment here talking to me and not in the middle of it.” This was our discussion about two years before we ever tried for children, and we spoke no more of this after Amy said that to me. Thursday night, Amy was proven right. I signed the consent, swallowing my fears and taking an adult like role, as Amy had done before prairie was even a dream. I owe all my strength at that moment to my wife. I was alone Thursday evening with the doctors. The decision was mine and mine alone. I believe the conversation we had 4 years ago about this scenario was God preparing us for this very scenario. After a successful procedure and draining, I left prairie comfortable. I left angry about having to deal with the fear I had, but knowing it was the right thing to do. If it weren’t for Amy and all she is, I couldn’t have had the strength to stand that night.

On Friday, prairie began to show signs of tiring. Her drain had worked, but her bowels still hadn’t responded. Her kidneys had begun to fail prior to the drain, but were working with the assistance of medication. She remained in little pain, and steady, but not as good as she had been the last few weeks. Amy and I knew this, we knew she was entering into her fight now,
Ike her sister, and within days we would be faced with decisions unnatural to make. Amy and I went home, we rested, we prepared for a Saturday back with prairie, and we hoped she would show the doctors what she showed these last few weeks. We hoped our return Saturday would bring the reports we got used to about her. “Prairie is steady, good heart rate, good breathing, just needs to poop”. But, the doctor at 2:00 am had a different answer for me. Prairie’s bowel had begin to leak into her cavity, and the drain was showing signs if stool. The doctor was concerned, but told me I could remain home until a decent hour if I wished, as she was stable.
I left for Boston at 2:45, and Amy followed minutes behind, with my sister.

We were told the surgeons had signed off on her condition. There was nothing they could physically do for her to help. The doctor explained it to us and it was clear we would be watching and waiting for her to pass. Prairie was different when I reached her this morning. Her head showed clearly the stress she was in, but she remained quiet and without any crying. Her belly was inflated, even with the drain still intact. Her blood pressure had risen and fell, not finding the perfect medium she had found so many times before. I called to her, and she opened her eyes and looked at me many times. The nurse said she had remained still and with her eyes closed all night. She reacted to every touch, every word I said. When Amy was able to get to her, she did the same for her. Amy and I asked then for her to be given some pain medication, and to remove her tubes so we could hold her free and naturally, like babies should be held, in our arms, on our chests. This was the first time we had been able to do this. Both Amy and I were a me to hold her with out hands, but not close to our bodies. She was 22 days old already, and holding her this way was long overdue.

Prairie passed away within minutes. She passed with full strength, stronger than even her sister libby had. She silently and stoically went to heaven to be with her sister. When all that remained of her was her body, I looked at everyone around us and told them; “I do not regret the decision my wife and I made this morning. I see now how tough she was. She was only hanging on to life for this, for us, for this moment, and we were bake to give prairie this.” To die of a leaking bowel would be the most painful of all things. I am petrified of dying this way, and if it were me, would leave this earth screaming in pain. I say this because I have felt a fraction of what prairie had happening to her this morning. God gave her the grace of peace. He protected me from my worst fears, of seeing my baby go through bowel reconstruction later in life. I still don’t know why we have to see the vividness of God in this ordeal, but He is showing it. We are seeing Him still, although this cross is as much as we can both bear.
In these last few weeks as a father, I joked with my wife about prairie possibly receiving my favor. I can say now, she would not have become my favorite daughter, or been treated with more love from me. I am nit programmed to be that way. But prairie tigerlily carried something special from me. If all could understand. This 14 ounce little girl knew my voice, and opened her eyes for me every time I came to her bedside. When her procedure happened, she reached for my finger after I had held her hand and removed my finger to give her a break. She followed my movements with her pupils, and I know she saw me. This morning, I know when I opened her plastic cover and talked to her, she began to relax, sinking into nothing more than content that Amy and I were there, and she could soon rest. My daughter gave Amy and I something we can cherish for our lifetime this morning. We both were able to hold and comfort, touch and kiss, love without shame or fear of embarrassment, our sweet little girl. Liberty sunshine and prairie tigerlily are together, as they were before this all happened, watching each other, resting face to face, and finally eating as much as they want.

March 2

This is to everyone who engaged on the u care site, as well as have sent cards and notes of support throughout,
I am sitting here beginning to gather my thoughts to write a thank you to everyone. When I write, I usually carry no outline or plan. I begin to unravel what I wish to say, and it flows until it ends. I apologize if this carries on and on. I feel I have so many things to put down. So many words of appreciation, determination, completion, direction, thankfulness and sadness all in one.

Today is March 1st. I took the time and went through the U care site and read all the names and all the comments today. I looked at the date of when Travis (with Amy’s close friends help of course) started this site. January 28, only about one month ago. I can not believe this connection to all of our friends has only been open for one months time. To me, it feels as if a decade has passed. I feel aged by 10 years as I sit and write this. So much has happened in this month of our lives, I also feel Amy and I’s marriage could be counted in decades, even though we slowly approach only our 6th year.

In the last few weeks since Praries passing, Amy has finally come home home. When she was discharged, we brought her to my parents house because of requirements regarding her initial care. All I can say, is when someone undergoes chemotherapy, they contract to ingest poison not normal to our bodies. Amy has had 2 treatments thus far, and both have had their ups and downs. The worst side effects parallel that of food poisoning for a few days. Also, Amy stands a good chance for permanent nerve damage if she gets chilled. That means her body must remain in a warm and steady environment while the chemo is working. She can’t drink ice water, or she could damage the nerves down her throat. She can’t go for a walk outside if it’s temperate without gloves, a hat, etc… Or she could have pins and needles in her extremities for life if they get cold. These side effects last for a few days after the chemo is infused. She needs to be careful for the 10 or so before the cycle begins again, and more of the poison is put through her.

Watching someone you love go through the treatment is like seeing our seasons change. Only it occurs in a day, not a 12 month cycle. The night before her second treatment, I had felt for one evening a sense I had my old girl back. We had eaten together, watched a movie, talked and laughed, joked and teased as we always do. She felt comfortable as far as pain, she had went outside with me for a little while that day. We talked of our spring plans for gardening. She asked about the barn I had begun to saw. The next day we woke very early, drove into Boston, and she sat down to receive a 6 hour infusion. I left to pay registration fees of a car for an hour, and texted her to see if she would like lunch. (She sent a text with her own concoction of a sandwich I wasn’t sure I could find and deliver, but I was able to.) She ate, and it made me so happy to watch her eat and keep it down. As the infusions stepped into the second and third bag, I watched the color in her face she had worked 10 days for disapear. Her speech slows, like she has gotten drunk. It begins to slur and her mouth feels numb to her. She begins to get cold, even though hospitals make everyone overheated. She starts to sweat very hard, and the last infusion begins. This one brings a feeling of sickness. Her insides start to respond, and she gets really uncomfortable. By the time the infusion is finished for the day, we are in a race to get her home, as she is very weak and tired. She looks as of she has run a few marathons, climbed Katahdin in between the run, and grabbed a few of the special burritos at chipotle after finishing.
That evening, she is off to bed, and I have lost her for at least 24 hours. I check on her of course, but I know she needs to sleep. These 24 hours are very hard for her and I. For her, she is in a state where she isn’t coherent. Her words are minced, they are confusing, they don’t make sense. We have chosen to keep her at my parents for these first few days as they are the most dangerous with side effects. To all who don’t know us, the reason for this is because our home is heated by wood. It’s not cold, but the temperature fluctuates overnight and at times when I am not close to maintain the fire. We have been told the seriousness of her nerve ending side defects, and we don’t want to take any chances. Our house is only a minute away from my parents, so I am close, and at my parents for most of this time. In those 24 hours, I must leave her to sleep and let the chemo work through her body. She sweats very heavily, so much the bed gets very wet and I know her body is draining not only the poison, but all her nourishment as well. To me it feels like I have lost her for this first day. Sometimes, I slowly go up to just look in on her, and I always find myself wanting, needing to go and touch her face, her hand, and wake her softly. It’s more for me to know she is there, fighting, pushing through the worst of it, getting it all out. I have a lot of experience with medical ordeals, and know and understand well the need for her to be left alone to peace and quiet, so I force myself to do so. The night I leave her to go home and sleep, take care of our critters, is not too restful. I lay in bed and think of her. I think to myself, “did I tell her yet how much it meant to me when she went to the factory in Nashua and made me homemade root beer for my birthday that time?” “Damn, did I fix everything she has asked me to fix around the house, or is there something I can surprise her with when she gets better?” I lay in bed and remember when she would tell me on the phone last summer about how quiet the treehouse was when I am not there. I was working across the state, and was not home during the week. It feels the same now. I understand what she meant. It’s an eerie silence, the waiting. Waiting for her to get through it. Waiting for a day or so, when she is reactive again. When she can speak and talk. I feel she must have felt that eerie silence as she waited for me to return on Fridays from work, to be together and enjoy all the little things we call our life. Maybe he Lord has switched the role so we both feel this now, and appreciate the time together much more, and not have it wasted.

After about a 24 hour period, she starts to come back from wherever the chemo has sent her. She begins to eat, she showers, she will sleep a lot, but also spend a little time reading or even a text or email. Her skin doesn’t feel as cold and lifeless, her eyes begin to take color again. By the second evening, she can come downstairs and join the family, talking a little, sharing a meal with us. Her and I can stretch out together on the couch or bed and talk about the sap flowing, or what we want to plant, or even a trip we have planned in years past but not taken. Sometimes our conversations roll into what we have been thinking of our girls, as both of us have them on our mind constantly as well. We use that time to talk some of it out, to reassure each other of them. To remind each other how happy they are, how peaceful. It’s a small piece of the healing we need to do. We both know this, but the truth is, we only have that. We have the tears we shed behind each others backs, or with each other, and the times like this to talk about them when they come to mind. It’s so hard to explain, but I keep reminding myself why it is. Amy and I can’t afford to fall into the darkness of being overwhelmed with sadness. Those feelings, although natural and needed by everyone, we have to try and keep to a certain level. It’s only for one reason. Not self preservation, not an inability or lack of desire to mourn that deeply, but because Amy is in her fight now. She has told me over and over, she is gonna fight for the long haul, for her complete healing. We both feel we need to be strong. We haven’t been afforded much time to give the girls our proper mourning, but I assure everyone we do mourn for them. We also fight, and she is fighting. I see it in her as she gains strength after the treatment. I watch as every day is a little better. I see her after 2 days able to come home to our tree house, and sit with me. I see her as she walks out and comes down to the sawmill, and asks if she can run the errand to the bank and post office, and get my boys a coffee break. This was only after 4 days of being unplugged from the chemo. I see her able to do the last cook of the maple syrup off on the kitchen stove Monday, after I boiled it outside for the day. She does this not because she has to, but because she wants to. She wants to do some things when she feels better. I planned to do those things anyway, I set time aside to do it.This is how she is. Amy doesn’t sit and let the ocean of life throw her into the rocks. She gets up as soon as she can, and picks up when she can. It is those little things that make me so proud of her when it happens. Those things are what give me hope for all this. I cling to them, because a week from tomorrow, we will begin this cycle all over again. This will be our life from here on out for however long it takes, to reduce the tumors, till they can be surgically eradicated, or they are wiped clean. I am excited for the next few days, because it’s those days, right before she is infused again, that Amy gets a little closer to the woman I love so deeply. She becomes her old self for a few days, and I have 2-3 days of such joy and energy in my day. It’s those days that not only make her ready for the next one, but I as well. In those times we make our plans for a trip, and we talk of the things we did so regularly and smooth. Like clockwork in what I am referring to as our old life, normalcy.

Today in Boston Amy and I were headed to an appointment, and I bumped into one of the regular NICU nurses I wanted to see regarding libby and prayer. Amy was well on her way, so I went with her and saw the day nurse team. I was given prairies things. A hat my mom made, some of her hair, and her blanket. A few notes and documents, tucked into a small nicely wrapped box. We talked for a while. I want to say right now there is a plan for some things to be done regarding the NICU and our girls. We want to make a donation so their memory is there forever, to help future parents. I am working on it when I can of course. All of the people who took part in this need to know they are part of that specific plan as well. They made it more than possible, But a reality. One of the NICU nurses asked me today after they asked of Amy, “and how are you doing?” I stopped for a minute, because lots of people are asking me how I am doing. To answer as honestly as I can, I am not sure. I can say what I know, and that is that I am tired. Amy is tired day to day as well, and gets tired easily. I feel my body telling me it wishes life were a little different right now. And so I rest. But, my body was made for working, and if I rest, my body tightens up and all joints hurt, back begins to kill, muscles begin to grow weak and so on. I know people can relate to this.

A few weeks ago, I began to saw lumber for an order I had taken last October. I wasn’t sure if I had it in me, but I wanted to try. Although the logs are fighting me more than they usually do, I quickly discovered after 2 or three logs went through the saw, that it was what I needed. You see, the sawmill commands all your attention. The sawyer holds the safety of not only yourself, but your crew in his hands with every movement and decision made. There is a 52″ circle saw that spins at over 2000 r.p.m only a foot or so from you, and you are not permitted distraction, or you will lose something. As i sawed the beams for my customers barn, and fell into the rhythm of the mills song, my mind was able to forget about all of this for a time. It gives my body the ability to process all this, to dispel whatever needs to come out of myself, much like my wife needs that day to purge herself after infusion. With sawing, it is something I know how to do, and do well. I am a man, and most men want to fix what is broken. I know that although my heart’s desire is to place the cancer into my scarred and tired body, and take it from Amy, I just can’t do it. I just can’t fix it. I can’t fix the loss of our 2 girls, or the pain and suffering they had to endure for their short time in this earth. But I can take a tree down, cut it into logs, turn it into beams, and supply a building for someone with the help of my great hard working guys and my father. It seems trivial to write this out, but I guess this is a big part of how I am doing. Although my work right now and maybe for a while is sporadic at best, it does serve a purpose to me. Someday, like all other sawmills, this will cease and die. This industry has disappeared from our nation. I thank God, and only God, for He gives me this ability to appreciate a simple trivial thing like creating lumber to ease my mind and restart my body. I have become a man who needs God to direct me in every little aspect of my life. Before, I feel guilty of the sin of not trusting in Him for everything. I am one who can accomplish a lot of things. I do carry a lot of skills, from mechanical ability whether it be cars or chainsaw or motorcycle, to a physical body capable of long hours of work on firewood, cutting trees, sawing lumber, gardening, etc..these things came from the people in my life, past and present, who taught me and I want them All to know I listened and am thankful. But I took for granted the fact I could do a lot, and at times I believe I never thanked God enough, or even asked God for help when I had problems to solve. I was a man to pray, and pray daily, but many times, stress took over my faith, and the feeling it was up to me to get out of whatever hole I was in felt like it was just me digging it. I forgot God had a shovel and was right next to me. Maybe Accidentally I threw some dirt on Him at times because I didn’t do what He asks us. This experience has brought me to a different feeling, and I physically feel it with exhaustion and mentally feel it with confusion every day now. To be frank, I can’t even sit up and lace my boots without putting it to God now. Before trying to accomplish this sawing I talked about, I went back and forth about canceling and refunding the deposit. I finally prayed about it, and the next morning, I knew I wanted to try. He helped me put my boots on and get in the log truck. after I realized what the sawing did for my state of mind, I knew why He did it. You see, there is a miracle in every little thing we do, but only if we actually give it all to Him to help us see what it is we are supposed to do. It becomes more revealing, and there is a smoothness to the day when your faith carries you, and not just your own confidence. I am a Christian who has spent many years overconfident I can do it all myself, and thus has changed. I wanted to share this so people can understand before I write more of how am I doing, that Amy and I have not lost our faith. Rather, I believe both of us has felt it grow stronger.

The loss of Liberty and Prairie is not easy, it’s not fathomable. The reason is pretty simple. In the technical of terms, Amy and I were still supposed to be enjoying the last trimester of pregnancy. We still have 5 weeks left until we expected to hear their cries for the first time,and they are already gone from this earth. Amy and I had walked into winter on top of our worlds. We had both become comfortable with our flow of life. Our work was just beginning to reward us. We had just finished purchasing a house we had saved for years to do. Ames was pregnant, and very happy about being pregnant. She carried the babies through 2 trimesters with only some discomfort starting at about the 4th month. She continued to walk every day, work and do what she wanted. She ate what she wanted. She smiled and we watched her belly grow bigger and bigger. We celebrated thanksgiving joyous with her family and talked of next year having little ones running around. I remember sharing with our church the news of the house and the pregnancy together and being so happy. I felt like the timing was perfect for all this, it was almost storybook timing. We even celebrated the new year with still the same confidence of joy at what lay ahead.

When things turned for the bad, they actually turned for the worse, and fast. Ames went from unnatural pain to hearing our girls lives were in jeopardy within a few days. 10 days later, they were born. We weren’t just scared of being new parents, the circumstances made us terrified. 2 days later, Amy gets diagnosed and it felt like both barrels of a 12 gauge was shot next to my ears. Within 2 and a half weeks, we had lost Libby. 6 days later, Prairie went to join her. I can’t even comprehend how Amy and I can go from being some of the most content Christians on the face of this earth, to being two of the most desperate for His miracles in such a short time. In one word, it’s humbling, these are some of what goes through my mind when asked how am I doing. I clearly just don’t know. I really don’t. I know I have to be reactive right now, and it’s all I can be. I have never felt this way before, fully reactive, and less proactive and prepared. I prefer to know what’s around the bend of the river before I get there, but right now I do not. In the end of some of these thoughts, I know we will put some of it back together. Somehow and someway. I guess we just have to go infusion to infusion right now to see when we can.

Another thing I think about when asked how am I doing is, what if. I have asked what if Amy doesn’t make it? What if something emergency related happens to her? I can tell you all, I have told some of my closest friends what will be if what if, but I am not thinking that way at all. I am trying very hard not to, and I am beginning to say I refuse to. The reason why is the paragraph above. If Amy and I can go from the top of the world we forged, to where we are now in such a short time, not knowing this would happen, I can forget about dwelling on the what ifs. I put my faith in God now, whole heartedly. Not once did I try and pretend everything was ok through all this. Not once did I pretend this story was gonna have a perfect ending. People who go through cancer or premature babies must and need to know that reality is your best medicine. The answer is to open your hands, lift them up to the sky, and tell Him you will be the flower in the field. You will let Him blow you whichever way He decides to, and you will be content to let the wind blow. Amy and I both have said many times, we pity men and women who are without faith in a time like this. It’s kept us strong, as have all of your prayers. If they were to cease now, we would be lost. Each and every one of you might as well chalk us up as deceased without your constant prayers. Amy needs them to get through her hard days, as she goes to all of your words for strength when she seeks help. I will not succumb to any what ifs. In the end of all I write to answer how am I doing? Well, I can only say to you I am enjoying every minute I have with my wife. Selfishly, without regret. Even when she is sleeping next to me, or quietly reading on the couch. She is like the 401k people know is there, but don’t use it right now. What I mean is she is all my security, knowing she’s right here next to me or not far from where I can get to her every day. It will stay that way too. Without her, I don’t want to answer the question of “how are you doing?”

I will say in closing, I answered the nurse at the NICU with one remark. After thinking, I told them of the support. I told them Of all that’s been done by friends, family, etc. Of my town, of my workers, of meals, donations, cards, texts, emails. I told them how big the love was and how much I have felt it. Everyone, it feels like the weather on our wedding day, may 15, 2010. It was sunny and 70 degrees. Absolutely perfect. Not too hot, not too cool. Each and every one of you should be proud of what you have done. You have taught your children a lesson in this painful and sometimes harsh world. You’ve taught that there is kindness and love in this world, as deep as the depths of the ocean. It makes me so overcome with emotion to see the names. Over and over I go them. Amy has too, and it gives us such happiness to see them. I am actually shedding tears now as I finish this up. Amy looked to all of you and wrote an update a few days ago when she needed strength. All of you should take that as an example of how much you have given. I have asked Travis that the u share needs to be switched over now. I want to kind of close it down, so to speak. Amy and I are taking the time to set up a blog spot, and we are going to start the blog off with all the pictures we gathered if the girls. There will be a link connected from here, and from facebook I was told. Please go and link it and save as a favorite. I’ll try and update it as I can, as often as I can. I’ll try and be good about taking some pics of Ames when I can too…. I also want to say to everyone who reads this I consider this u caring to be sort of like a family tree. There’s these main stems, and they branched out into lots of branches. If each if you could go back through the branches of your u care and how it got connected to you, my family is helping me to gather some of your contact info for something. My sister Dawn, wants to do something in memory of my girls, and wants to send people something to do it with. I told her it would be fine. And I plan to assist as well. So, I am going to name some names here.

Trav Kuffel
Lindsay Jones
Michaelyn Connors Bonanno
Dawn Tyack
Kate Tyack Mosher
Annie Tyack
Loralee Reyes
These are some names of close friends and family that can get some of your names and info to the right places. If you don’t wish to send it off, that’s totally understood. I told my sister Dawn I would say something. I haven’t asked these people yet, but they are very involved with what’s been going on, and will be very willing to help.

I know it’s cliche to say I don’t have the words. Especially after writing about 10,000 of them tonight. But to all of you. I don’t have the words. Some things that come to mind: I saw a comment made by an Old friend from middle school that said she wasn’t sure if I remembered her. My answer is yes, of course I remember you, so well,and so clearly like it was yesterday. I saw a comment by my 4th grade teacher, and I remember her coming to tutor me in 7th grade and I saw her again through high school later in life. Of course I remember you. Amy smiles at names from all the way back to childhood. I see names and faces of people I will see physically as the days roll on. I see names here of people I haven’t seen in a long long time, but would love to see again sometime soon. I know all of you on my side who donated, I have a great memory and remember all your names. Amy remembers all of you as well who donated, and when we get the time to read them, we tell each other of who they are and when we knew them well. I play guitar,and occasionally I write my own music. I have a line at the end of a song I wrote once, and it’s times like these, I like to use it. I use it when I find myself without the words to express my gratitude.

Four Down!

Yesterday was my fourth treatment and again, I’m feeling good afterwards– YAAAAYY!! Praise the Lord, and thank you all for praying! Next week I’ll have a CAT scan to see if the tumors are shrinking. I can hardly wait to find out the good news! Yes, I really feel that the scan will show good things- a major answer to prayer, or as my mom has been praying, a miracle. In a way I don’t want to get my hopes up, but another part of me wants to soar upward like a hot air balloon, lifted high on hope. There’s a sign or poster somewhere on the oncology floor at Tufts that says that 25% of healing is due to positive thinking. I don’t know how anyone could test that empirically, but I really like the thought.

Someone asked me what exactly chemotherapy was, or what was the process of receiving it. So, I thought I’d give a view of what happens on chemo days. I didn’t know a single thing about chemotherapy before I started, or much about cancer for that matter. I honestly haven’t done a whole lot of research into either, but I can share what my experience is.

First, Nate and I make our way to Tufts every other Wednesday. I go to the infusion center on the oncology / hematology floor and have blood drawn through a port in my chest. The infusion center isn’t at all intimidating, although the name sounds it a bit. The first time I went for treatment, I stood outside the center for about 5 minutes trying to get my courage up to go in. The only thing that made me walk in there was not wanting to look like a chicken when Nate came to meet me after parking the car. Anyway, the infusion center is comprised of an informal nurses’ station and about twelve small rooms, most with a big window and a view into Boston. There’s either a bed or a big comfortable reclining chair in each room. The last two times I’ve been relaxed enough to fall asleep in said chair- I wouldn’t mind taking it home.

Anyway, my wonderful oncology nurse Kelly comes in and hooks tubes up to my port, which feels like a small animal bite as the needle goes in. The port thing looks like two big bumps protruding from under my skin, reminding me so much of that scene from ‘Aliens’ when the baby alien is about to rip out from inside Sigourney Weaver’s stomach. Yeah, visually it’s gross but medically it’s a god-send. Far, far better than having an uncomfortable IV that has to be uncomfortably changed every 5 days. The alien-port thing connects inside to a major vein or artery so it’s also more efficient than an IV.

After that, my blood is sent to the lab. The main thing they’re checking for is red blood cell count because it’s been low since having the c-section in January. The count has to be 9 or above (I don’t know 9 parts of what unit) in order to have the chemotherapy infusion. If the RBC count is below 9, I have to have a blood transfusion. I still haven’t gotten used to that bag of blood, which reminds me of another gross movie scene- the part in the most recent ‘War of the Worlds’ when the machines are slurping up humans and apparently squeezing them for blood. Real nice. That image haunts me, especially when the blood turns to living plant- like tendrils on the ground.

So, after the lab results come back I meet with a nurse practitioner who asks me questions about the week, how I’m feeling and what my reactions were to the last treatment. She gives me a quick physical exam and goes over the numbers from my blood test. If all of the chemistry comes back quickly, she’ll have results like liver function and tumor markers in addition to RBC count.

Then I go back to the infusion center and either get a blood transfusion or get started on the chemo. Kelly gives me anti-nausea medication intravenously then hooks up the first bag of fluids to the tubes connected to my port. My treatment is called Folfirinox, and is comprised of four liquid chemicals: fluorouracil, leucovorin, irinotecan and oxaliplatin. Three of these are infused through the port over a span of about 5 hours in the center. The fourth goes home with me in a pouch that I wear at my side constantly, as a pump infuses the last chemical over 46 hours because it’s more effective when sent into the body slowly. Having that pouch hanging onto me constantly is annoying, and I’m relieved to get it removed on the Friday following chemo day- unfortunately we have to make the trip to Boston just for that.

That’s the extent of the treatment. I can’t feel any fluids going into me, but I feel their various effects pretty quickly. One of the chemicals makes my muscles seize and / or spasm. Not huge movements, just small things like I’ll suddenly start to lisp due to mouth numbness or my voice gets squeaky as my vocal cords contract. One of the chemicals is much worse, causing nausea, painful stomach cramping and diarrhea. Kelly gives me plenty of anti-nausea medication though, and lately the effects of that chemical haven’t been bad. Pretty much as soon as the infusion starts I feel myself growing tired. Not sleepy tired, just worn out, like the energy is draining away from me. It may be mental as much as physical. Chemotherapy is poison, designed to kill the most rapidly reproducing cells in the body, but being unable to target just those, it affects all cells. It’s a strange relationship- depending on a poison to heal. It’s nasty stuff, no doubt. I don’t like the thought of all that going into me and just what it’s doing.

Chemo takes it’s affect on various parts of the body, manifesting in me as sore muscles, altered heart beat at times, and hair loss (just thinning, thank goodness). It can cause permanent damage to skin if I don’t protect myself from cold. As soon as we leave the warmth of the hospital, I get sharp pins-and-needles feelings in my fingertips. These will continue if I don’t keep warm, and will extend to my toes. Making dinner tonight I had a little scare after I formed some meatballs out of partially thawed ground meat. For 10 minutes I couldn’t feel my fingertips, but got feeling back after running them under hot water and thumping my hands to get blood flowing (it was careless of me, I know).

After talking with other people who have had cancer, or reading their blogs, I know that my experience hasn’t been that bad in comparison. I’m fortunate in that I’m not sick all the time, and have been able to function normally for the most part (except for some of the days following my first and second treatments). My hair hasn’t fallen out all at once like it does for some people, which must be darned traumatic. For these things and much more- I have so much to be thankful for.

The Weaver

The Weaver

My life is but a weaving
Between my Lord and me.
I cannot choose the colors;
He worketh steadily.

Oftimes he weaveth sorrow,
And I in foolish pride
Forget He sees the upper,
And I the underside.

Not ’til the loom is silent
And the shuttles cease to fly,
Shall God unroll the canvas
and explain the reason why.

The dark threads are as needful
In the Weaver’s skillful hand,
As the threads of gold and silver
In the pattern He has planned.

Thank you, Rowena, for sending this poem, and for sharing this piece of wisdom with us (originally from Mr. Abram): “God is God, and if there were a better way to accomplish His purpose in us He would know what it was and would have used it.” That’s good stuff.

Thoughts on Heaven

When I was younger I tried to picture Heaven. As I got older, what Heaven might look like didn’t seem so important, since what really matters is being in the presence of God. But since our babies went to be there, my thoughts have increasingly turned toward Heaven, including what it might look like, and what people might do there. I know that people worship God in Heaven, but is that all that they do? My friend Cathy said that she likes to think that God took her daughter to be with Him because He had a better purpose for her in Heaven than on Earth. I like that a lot. I wonder what use He might have for our tiny little girls. Maybe they’re not tiny anymore- the Bible indicates that we will have different “bodies” in the next world, perhaps spirit rather than flesh. I can’t help but wonder what Prairie and Liberty look like now. And what they might be doing. My Mom said that they’re probably with my Dad, fishing, which makes me laugh to think of. I’m not sure if there is fishing in Heaven, but if there is, my Dad most likely has a line in the water right now.

I think of people who I loved that our girls will see there. Mindy, GramBeth, Mr. Frank Murray…

It may not be an idle thing to try and picture Heaven. After all, the Bible has a lot of descriptive passages about the appearance of God’s throne and the new Jerusalem. In a women’s Bible study at church we have been studying Heaven. The teacher did a great job with Ezekiel 1 and Revelation 4, which have descriptions of God’s throne and surrounding area, and the beings found there. Both accounts rely on phrases like “appearance of” and “likeness of” in trying to explain what the writers saw, probably because what they saw was so other-worldly and strange, that they lacked the right words. I wonder why God wanted these passages to be in the Bible. To give us an idea of how “other” He is? To give us an idea of the beauty, majesty and awe that awaits us?

My picture of Heaven is this earth as it was when God spoke it into existence, shiny new and perfect. But the Bible says that there will be a new earth, and on this one for some reason there will be “no sea” (Rev 21:1). I don’t get that, since the sea is really nice… oh well. The important thing is that we will see God face to face, and there will be no more mourning, crying or pain. And Nate and I will see our girls again.

I recently came across the beautiful old hymn When All Thy Mercies, O My God and love these verses from it, especially the last one.

“When worn with sickness oft has Thou with health renewed my face;
And, when in sins and sorrows bowed, Revived my soul with grace.

Thru every period of my life Thy goodness I’ll pursue
And after death, in distant worlds, The glorious theme renew.”

Grateful

There is so much to be grateful for today, that I’m just going to list it all.

1. All of my numbers from the blood tests came back good yesterday- that’s red blood cell count, liver function test, tumor markers and a few other things. Some of the numbers have changed drastically (for the better!) since my first treatment. Yay! and praise the Lord! And thank goodness, I didn’t need a blood transfusion this time.

2. I feel great today! It’s simply amazing. It doesn’t feel at all like I had a treatment yesterday- no sickness, weakness, or tiredness. And nothing about the treatment changed- I got all the same stuff. It’s like night & day from the last 2 times. I give all the credit to the Lord, and thanks to the many, many people who are praying for me. God answers prayer!

3. I have no pain, and have been off painkillers for over a week now. Happy to be clear-headed and a lot more with it than I was before. Plus, now Nate can’t tease me about “chasing the dragon” :).  It seems like the chemo must be working and has shrunk the tumors in my liver that were causing the pain. If so, that’s great.

4. I am so grateful to live close to Boston, where I have received and am receiving some of the best health care in the world. Although Nate and I would love to live in the wilderness, if we did right now, we’d be in a very different situation. Or we would have to live at the hospital, like I heard about some people doing who came to Boston from the Midwest.

5. I am grateful for the good doctors we have met at Tufts who are caring, communicate with us well and act as a team with doctors in other departments to cover all the possibilities. As good as the doctors are though, the nurses are even better. The ladies in the Labor and Delivery floor were like angels to us, and still are, as they keep in touch with us via text, come to see us when I’m in for treatments, gave us a beautiful gift, and donated to us through our U-Caring page. Wow. I would love to name them personally but I don’t want to risk leaving anyone out. My oncology nurse Kelly is also a treasure, who tries hard to mitigate the bad effects of the chemo, sits down to chat and laugh with us, and really cares about what we’ve been through and are going through.

6. Nate and I got a card this week from a friend in PA who said that believers are praying for us in 3 churches in her area, as well as Ireland, Paraguay, Texas, Delaware, Oklahoma, New Mexico and Virginia. This is just from one person reaching out to her friends- and we have received many similar cards or messages. Cards from churches all across New England who have heard about us somehow, with many people from the church signing it, sending messages of faith. This amazes and encourages me so much. Nate’s goal and desire through the U-Caring site was to have 100,000 people  praying for us. Only The Lord knows the number, but it seems like that many from what I hear about people all around the US and the world praying.

7. I am very humbled and very grateful for the testimonies of people who say that our faith through the suffering has strengthened their faith. Thank God that something good can come of this. “All things work together for good for those who love the Lord”

8. Our town has felt like a close-knit community as people have done kind and generous things to help and support us. Wonderful ladies from the town hall have brought us numerous meals. A friend with an excavator dug for two days free of charge, to repair and replace a leaking water pipe that had left us without water. The Police Benevolence Fund donated a huge amount to us out of the blue. We’ve received gifts, gift cards, a loaf of bread showing up at our door, and more from people who live nearby and want to show that they care. From the bottom of my heart, thank you.

9. I am grateful for this weather! Yesterday was 70-75 degrees around here, and it felt so good. Not only is the rising temperature more comfortable, but I also don’t have to worry about developing neuropathy in my hands and feet due to the cold. And I can go out for walks! Yay

10. Lastly, and most importantly, I am grateful for my wonderful husband. It comes naturally to use the pronoun “our” when I mention treatment, and that’s because Nate has been with me for each treatment, holding my hand, holding my hair back when I’m sick to my stomach. He has been there for every appointment and meeting with doctors from the very beginning of our ordeal. He remembers things that I forget, was clear when I was foggy, and asks important questions that I don’t think of. His belief in me makes me a stronger person, as does his example of quietly accepting all of the physical trauma that he has gone through. Nate gives me the priceless gift of humor, making me laugh every day, even right through chemo treatment. He is tangible evidence of how much God loves me.

Carpe Diem

Today is the second to last day of this chemo cycle, as Nate and I will go to Boston Wednesday for the next infusion. These last few days are wonderful- I have more energy and strength and am not tired. I feel like joking, laughing and singing; basically, I feel like myself again. We’re about to get some warm weather here and I’m looking forward to being able to go outside, take a walk, and hopefully get back a little of the lost muscle in my legs.

The service at church yesterday was on the Good Shepherd, who I love hearing about. The metaphor of sheep and a shepherd for humans and Jesus, respectively, makes so much sense to me because it is based on tangible things. I love that so much of Jesus’ teaching is phrased for simple minds.

I was very happy to be back with our church family, worshipping the Lord yesterday. The people who I attend church with are so much more than just that, and more than members of the same organization. We are family. This family has shown us so much love in the last few months. I feel like they have shouldered the burden of pain with Nate and I, and seek to lift it with prayer, encouraging words, acts of service, and even gifts. We are blessed at all times to have these people in our lives, but when going through trials, it’s clearer than ever.

It was while talking to someone at church, telling them about the good days / bad days thing, that I realized that I should be more intentional about making the most of these good days. So, today I went to a friend’s house for a visit and lunch. Next, I’ll do a little cleaning in the apartment, and this evening Nate and I will go to Johnny Rocket’s for a good burger and shake, then go see a movie. Tomorrow I’m planning on taking advantage of the nice weather to walk around downtown Rockport with some friends.

As some funny person once said: “Seize the carp!”