Coming home

So Ian was released from the hospital on Friday at about 3pm.

It felt like the end of summer camp in some ways. We spent most of the day saying our good byes to the nurses and doctors and some of the other patients. I tied up some loose ends to get everything ready at the house for Ian.

Ian walked out of the transplant unit and he looked so good. Tyler met him at the elevator and they waved bye bye to the nurses.

Ian took his mask off when he got into the car and took a long deep breath. He drove away from the hospital. Most people can hardly walk to the car after transplant but Ian got to drive away. We are aware that although Ian’s transplant had its challenges, he was lucky to feel well during most of it.

We got home and were surprised by a big welcome home sign that the church had left for us. We got settled in, unpacked, and got home health equipment delivered for the next phase of Ian’s healing.

In the evening we were surprised by a bunch of friends who came by to say welcome home to Ian.

I don’t know what else to say other than it is good to be home. Yesterday we got to spend the whole day just hanging around the house as a family. More than once Ian and I looked at each other and the tears just came. Our hearts are full.

This whole experience has changed me. My mind is tired and my insight is limited so I’m not sure exactly how and to what extant but I know I am different coming out of it. I know that part of me has hardened, but I have also softened in other ways. I have fallen deeper in love with Ian. I love and appreciate our son more.

We are now in Ian’s next phase of recovery. He goes to the outpatient bone marrow transplant clinic every other day for lab draws and infusions. I’m also giving him IV antibiotics at home. It’s remarkable how much better he physically feels after just 2 days at home. He has a better appetite. He sleeps better. He has even better energy than he did when he was in the hospital.

I may write time to time about updates on Ian and our family as he completes his engraftment but if I don’t get to it, I want to tell all of you who have followed our story, encouraged us, and cared for us during this time-thank you. Thank you for being with us. This was the hardest thing I’ve ever done in my life and I never felt alone. I am grateful for that.

Expect big things from the Danleys in 2015! Love you all.

-Shiloh

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Getting unhooked from the IV pump by one of our favorite nurses Michelle

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Driving home

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Mr. T being a cool kid

Day 30-Hello neutrophils!!!!

So the last week has been one of the craziest, scariest, and also most incredible weeks of Ian’s and my life. Where to begin…

Monday we got some good but also puzzling news.

When I last wrote, I described our encouragement regarding the bone marrow aspirate results showing the presence of all three major blood products; white blood cells, red blood cells, and platelets. This past Monday we got final pathology results for Ian’s bone marrow.

The results were encouraging because the marrow showed no signs of lymphoma or any other type of cancer in Ian’s pathology. -This had only been a remote concern but it was still good to hear that cancer wasn’t causing him to not engraft. I think that is one of the curses of cancer, you always have it in the back of your mind as a possible culprit.

The other good news we received was that the supportive environment in his bone marrow, the stroma, looked healthy as well. I had intimated in my last post that we had believed this to be the fact because his bone marrow aspirate had shown some cells present as well. Nonetheless, it was good to hear that the bone marrow was capable of growing cells.

The puzzling news was that the marrow was remarkably “hypocellular”, meaning that the amount of cells they would expect to see after receiving 10 million stem cells in transplant was not as high as expected. The doctor said it was “as if he had been given water instead of a transplant”. (Gotta love comments like that.) We had a mystery on our hands as to what had happened to these stem cells.

The doctors had essentially 2 possible theories, but neither really held water when put to the logical test. The truth was that they did not have definitive answers.

Ian, kit, and I all felt and interpreted the news differently. It was comforting and encouraging on one hand and scary and disappointing on the other. We tossed our own theories around and tried to come up with ideas for how this could of happened but it brought us no peace. When I looked down at the details I could not feel certain about anything.

More waiting….

During our waiting we have gotten better at actively engaging hope in our situation. The love and support we have received during this time has changed Ian. I can’t describe the full extant of his transformation yet because I feel that it is still occurring but there is something tangible and real that is different within him. He has developed a deep calm and peace that is disruptive to the chaos of our environment and the confusion I feel in my heart. He is relieving to be around. When anyone could understandably be angry in his situation, he is not. He spreads joy to the nurses and encourages the other patients. He fiercely loves our son, Tyler. I don’t know how to describe the change anymore with words. You just have to see it.

With the information of the bone biopsy, the doctors recommended giving a medication to help regulate his immune system (IVIG for you medical people who know what it is) and giving the rest of the 6 million cells he had collected on Friday.

Monday night Ian felt a familiar, but again puzzling sensation. His bones began to ache. His body warmed up and he got a low grade fever. If you know anything about transplant, you may be able to guess what was happening but if not, allow me to bore you with some medical mumbo jumbo…

Since 9 days after transplant Ian has been receiving a medication call Neupogen. What this medication does is stimulate the bone marrow to produce white blood cells at a faster rate. Many people who get chemo at some point receive this medication or a medication like it because most chemo drugs kill a large number of your white blood cells and your body can’t keep up with producing them fast enough without some help. In preparing for autologous transplant, (the type of transplant Ian had, where he donated stem cells to himself) they give you high doses of Neupogen to kick your bone marrow into overdrive in producing white blood cells and, with high enough doses, to get your bone marrow to release stem cells into the blood supply for collection. The bone pain experienced by patients after even low doses of Neupogen can range from unnoticeable to severe. With the high doses you get before transplant, most people have some pain.

But back to the story…

On Monday night Ian began having that distinctive, familiar bone pain. The pain that signaled him that his marrow was going into overdrive. Tuesday morning his count was 0.2. After spending a week or so at 0.1, 0.2 was an improvement, but we had also been at 0.2 before and seen the count drop. We were hopeful and cautiously optimistic but we tried to contain ourselves for fear of setting ourselves up for heartache.

Tuesday came and went. Ian’s energy has been improving over the lat few days and he has been able to walk outside so we spent much of the day in the beautiful desert garden they have here at the hospital. Ian calls it “my garden” as in “tell the nurse I’ll be in my garden.” We are really taking over this place.

The doctors shared our cautious optimism but moved ahead with the plan. Ian got the IVIG on Tuesday to help regulate his immune system. One of their theories was that maybe he had been having some auto-immune reaction destroying his cells, but as I had mentioned earlier it is easy to punch holes in this theory. The risk was low and the potential gain was high, also there were no other ideas, so Ian got the medication.

Tuesday night Ian had the same familiar bone pain. It was so strong this time, it affected his sleep.

Every morning labs are drawn around 4:00 am and we have become accustomed to waking up at 5:00am to check the mayo clinic app on our phone to see Ian’s test results. Yes you heard me right, they have an app #mayoproblems

Wednesday morning it was 0.3! We were so excited but also scared to be excited for fear that somehow it would all just go away. I know I, at least, have been traumatized by the unpredictable path these last 2 years have taken and have all sorts of weird hangups that find ways to bite me in the ass. One of these hang ups is always meeting good news with an initial level of disbelief.

We spent the day walking and enjoying our time together in the garden. We all played a game of cards during the night and at the end Ian said he hadn’t had that much fun with his family in a very long time.

Ian’s bones ached last night and his low grade fever, which we now believe to be fevers of engraftment, came and this morning we woke up to the incredible news that he is 0.5. I will say it again, 0.5!

The doctors have decided that they will hold on giving him any more cells, because his bone marrow is working. It is recovering finally. We are so happy and relieved! I have spent much of the last few days explaining and then re-explaining the medical information from he last week to family but also to myself. There is much of this that will remain a mystery. I feel great comfort from being able to say that. I cannot explain how it all adds up but, nonetheless, the sum is that Ian is finally engrafting.

He feels great and he doctors want to release him tomorrow so he can spend the rest of his recovery with us at home. There is still some journey ahead of us but we are going to begin to get back to normal life.

Thank you all for your care and concern during this time. Thank you for your visits, and cards, and gifts and encouraging words. We have never felt alone in this and we are so grateful for you all.

-Shiloh

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Ian walking with the fam in his garden

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Sorry if these seem a little “Jesus camp” but we were praying with Ian and Tyler just joined in.

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Ian in “his garden”

Solidarity pajamas… A gateway drug of sorts

I really don’t know how to even begin taking about the last few days… I feel like we have lived a year.

When I last wrote on the 13th Ian’s white blood cell count had dropped back to zero. The next day it rose again to 0.1. Even the small improvement was a hopeful sign that the graft may be taking.

The next day was 16 days post transplant and his count increased to 0.2. We were so excited. The doctors were happy and we began to imagine about going home and getting back to normal life. At this point in has been in the hospital 24 days and there is no adjective that truly describes how awful it feels for him to not know when he will get out of here.

Then, he hit a wall. I think it was a mixture of building stress, exhaustion, and the paradox of staying hospitalized while he feels so well that drove him to a breaking point. He was ready to just leave. We are thankful for the doctors and nurses because they helped negotiate a way for him to stay. He is now able to see Tyler in a special conference room on the oncology ward and he is able to have some food from outside. They even said that if he is stable he can go outside to the healing garden for some time. For Ian, who has walked 6 miles a day on a nursing pod with a perimeter no greater than 50 yards, these small freedoms make such a difference.

Overnight, Ian developed a fever and it didn’t really stop all day today. Fevers can be harbingers of several things during the transplant process. Infection is a very real risk and concern and, as Ian does not have any natural immunity at this point, the doctors have strengthened his antibiotic regimen and stepped up his other anti-infectives. Fevers can also be a sign that cells are engrafting. More on this later.

This morning Ian’s counts dropped back down to 0.1. This news coupled with the fevers was extremely discouraging. Ian had to have another bone marrow biopsy yesterday morning ( a test where they drill out a core sample of your bone marrow from the back of your hip).

The doctors were testing to see if the graft had done anything at all at this point. If the bone marrow showed no signs of cell growth,frankly the ramifications would be serious. The only real reason the doctor could explain for why a graft wouldn’t work in the type of transplant Ian got would be if the bone marrow was irreparably damaged from the chemo he had received. This type of bone marrow damage is very difficult to treat and chances of long term survival are much lower.

We knew all of this and spent the morning finding ways to pass the time. We were scared. We walked, talked, and snuggled. We watched tv and tried to sleep but sleep was hard to come by. The biopsy results showed that all three blood lines are present – platelets, red blood cells, and white blood cells – in his bone marrow which means that’s these stem cells are engrafting. Ian is engrafting just slowly! It was very good news. Ian hugged his doctors. I hugged them too.

Every Dr at Mayo who is looking at our case agrees this is just a case of delayed engraftment. Even an expert in Seattle was very pleased with the case and agrees this is just a delayed engraftment. We have to wait is all. We are not sure for how long. So far all the tests for infection have come back negative. Our Drs believe that means the fevers are engraftment fevers, more good news. Once the fevers go away, Ian will be released and he can wait for eventual engraftment at home. We feel excited to see an end in sight.

Ian was surprised by some of his closest family and friends ( including me) who got tattoos that say “Jehovah rapha” in Hebrew which translates to “God heals”. If you remember, for Christmas Kit made us all pajamas with Jehovah rapha written on them.

Well my brothers first decided to take it to the next level from pajamas and get this tattooed on their arms. We all followed suit. We had planned a big tattoo reveal but Ian accidentally saw a photo on my phone so we just had people text pictures of their tattoos. Ian would see a picture, cry, see another picture, and cry some more. He was overwhelmed by this act of love and solidarity.

Thank you all for your love during this time. We continue moving forward and hoping anyday now that Ian will see his white blood cell count go up and fevers go away. Thank you for keeping us in your prayers.

-Shiloh

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So… It’s kind of complicated..

Well it’s been a while since I blogged. There really hasn’t been that much going on.

Ian is now 14 days post transplant. Every morning he gets blood drawn at about 4 am and every morning he texts me that his white blood cell count is zero. Every morning I get the news and prepare for a day of waiting. He continues to periodically require blood and platelet transfusions. It is turning into Groundhog Day over here…

Yesterday we got a brief break because Ian’s white blood cell count was 0.1. The doctors said it might go down though. They questioned if it was real.

Well Ian’s counts are back to zero again and we are a little discouraged. We are tired. Ian misses Tyler very very much. The doctors have started doing additional tests to see if there is anything else they can be doing to speed along the process. Ian will begin double doses of a bone marrow stimulating medication today and they will be testing his blood for possible infections that can cause low white blood cells.

Overall we are doing well but anxious to get home. Please pray for Ian. Pray that his white blood cells come in and he is able to go home soon. Pray that the doctors are able to identify if there is anything they can do to speed the process along.

Thank you all so much for your support during this time. I will write with more updates soon. Please text me if you are interested in visiting and I will let you know if it is ok. 6027621300

Day 17- Are you there Barak? It’s me Ian..

So the transplant saga continues. This is turning into one of those movies that is like an hour too long. (Think lord of the rings ending). Ian is starting to get stir crazy. Every morning we get the results of Ian’s blood work and quickly scan through to see if he has any white blood cells. So far nil.

It’s really unheard of to have any white blood cells by this time but nonetheless the rumor mill among the patients, families, and experienced nurses spits outs stories about patients who went home 10 days post transplant. The best one I have heard is 8 days post transplant. Ian’s doctors continue to say it’s just not possible. The counts are expected to come in day 11-13 post transplant. Ian is day +9 today. We continue to wait and wait…

Today President Obama spoke at Central high school. Ian was given a special invitation as a member of the Phoenix Union high school district school board but wasn’t able to go. This is the second time he has been given a special invitation to meet the president and the second time he hasn’t been able to go. Yo POTUS, why you avoiding my husband?

Well through this whole experience, we have learned to improvise…. Enter The Chella!!

Chella is Ian’s youngest sister and she has definitely inherited the Danley method of “gettin’ stuff done”. Chella was selected as one of the 30 students from Central high school to be in the crowd for the president’s speech. She started in the balcony. we know not how, but through the Danley method of “gettin’ stuff done”, she made it to the front row.

After the president finished the speech, he walked through the crowd. People reached out to shake his hand and we have confirmed with multiple sources that Chella jumped over several people to get to the president. She got his attention and when he turned to her she said, “Hey you know my brother, you gave him an award!” The president said, “who’s your brother?” To which Chella replied, “Ian Danley.” Again, we have heard from multiple sources that THE president of the United States said, “Oh Ian!” then nodded.

There are a lot of layers of love in that story. I’m not going to lie, I was bummed when I woke up. I thought about how my husband was getting stiffed out of another once in a lifetime experience because of cancer and it just stuck with me. Several people who were at that speech have told me that all they could do was think about Ian. But I gotta hand it to Chella, she brought Ian with her in a way I you just can’t make up. Secret service ain’t got nothing on you girl! We love you Chella. We love your tenacity, your passion, and your loyalty to Ian. We can’t wait to see all the amazing things you “get done” in your life!

We had lots of visitors today who loved on Ian. Ian is fighting to keep his eyes open these days, the fatigue is unreal. He went to bed early tonight and will no doubt wake up tomorrow and immediately ask about his counts. He wants to go home but we are trusting the process. Going home too early generally means you have to come back soon for some complication. We thank you all for your words of encouragement and prayers. We ask that for tomorrow you refrain from visiting or text beforehand so that Ian can rest. It was a momentous day and that tends to tucker the man out. Day +10, here we come!

-Shiloh

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Chella getting to talk to the president

Day 15- waiting…

The day’s continue to stack up. Ian is now 7 days post transplant. His counts remain low but he believes he will see a bump in his counts any day.

The next step in the transplant process is engraftment. I believe I have discussed this in previous posts. Every morning at about 4 am the nurses draw Ian’s blood to check his “absolute neutrophil count (ANC)” among other things. His ANC has been at zero essentially for three days now. As the new stem cells continue to work diligently to make new white blood cells there will a point at which the bone meow finally begins releasing the white blood cells into the blood stream. That day we will see Ian’s ANC make a small jump from zero. This is engraftment. Everyday afterwards, Ian’s counts will continue to increase. Once his ANC is over 500 he will be allowed to go home. Sometimes this is the day after engraftment, sometimes several days afterwards.

Ian remains physically vulnerable during this time while awaiting engraftment. He received an additional blood transfusion for his anemia today. He has been closely monitored for fever during this experience, and today he had two very low grade fevers (temperature not over 100 degrees). He has been on antibiotics, antivirals, and antifungals since transplant and the doctors have adjusted his antibiotics with his recent fever. When you have virtually no white blood cells, fevers can occur as a sign of infection or in absence of infection. Ian’s fevers are not alarming but rather an expected consequence of transplant. He feels well still and continues to do almost 12000 steps per day in the pod.

Today Ian, kit, and I all collector realized how exhausted we are. Ian napped more today and kit left earlier so she could get some rest. I plan to turn in soon as well to get some extra sleep.

We appreciate your visits and prayers!

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Day 13- Blessed are those who mourn

Things keep moving along here at the hospital. As expected, Ian’s counts have begun to drop and to explain this phenomenon I feel the need to bore you all with an anatomy/pharmacology lesson. Feel free to let your eyes glaze over for the next few paragraphs…

The stem cells in everyone’s bone marrow are responsible for producing three main blood products that keep you alive and your body healthy:

-red blood cells, which carry oxygen to all of your body
-platelets, which are essential with forming clots so bruises don’t keep growing and wounds stop bleeding
-white blood cells, of which there are many different types, which help identify and combat infection

A specific type of white blood cell, the neutrophil, is followed closely during the transplant process. Neutrophils are some of the “first responders” in the body. Anytime there is cell injury or an invader (virus, bacteria, etc.) identified, neutrophils are some of the first white blood cells on the scene. They start cleaning up the mess and fighting those invaders. They are the most abundant of the white blood cells and are essential to preventing infection. All of that info jiving? Ok, then here’s the next part…

All chemotherapy drugs have a point at which their effect is strongest on your bone marrow. This point is called “nadir”. With the type of chemo regimen Ian received to start his transplant, all of the drugs reach nadir about 5 or so days after the transplant. Today his neutrophil count is very close to zero, his red blood cell count is low and he feels the fatigue of anemia, and his platelets are low as well. He will stay at this point for the next few days. He is at highest risk for infection during this time and he is being closely monitored while his body is in this compromised state.

He continues to walk the pod for at least an hour everyday and gets down the majority of all of his meals despite having significant nausea and multiple diet restrictions while his immune system is so compromised. His heart rate has been elevated so they are giving him extra IV fluids and that seems to be doing the trick.

For the most part though, things are slow and in these quiet moments here at the hospital we have begun to grieve. These last few years have been punctuated with a series of lost experiences, unfulfilled hopes, and bittersweet celebrations. Cancer casts a long shadow in our lives.

I think most people who have experienced grief understand that it is not just the big loss that hurts, it is all the little losses along the way and the rippling effects that are felt unexpectedly so many years afterwards that hurt as well.

So many of the experiences that we had imagined would look a certain way have been pervaded by the echos and ripples of this battle with cancer. Ian has missed an opportunity to go into the Oval Office when he was honored as a Champion of Change. He was home recovering after having a lymph node resected. Ian had to go get chemo just two days after our son was born. Our son turned one month old and shared the celebration with Ian finishing his first course of chemotherapy. When Ian was in remission, we contended with the fear of cancer returning. Like a child who fears a monster under the bed, at every whisper of illness we have shuddered. In the darkness even what we knew was true became distorted and frightening. We have had little peace.

I was reminded that Jesus said “blessed are those who mourn, for they will be comforted” and despite the pain and sadness we feel during this time, we have had comfort. We have had two couples in particular, the Maloufs and the Ryans, who have provided us with deep comfort. I have found that those who provide the best comfort are those that have been marked by great suffering as well. We thank you Pam and Joan and Ed and Rick. You have given us so much permission to feel during these last few days.

In the next days we hold our breath until those new stem cells reach a critical mass with production and we begin to see Ian’s counts go up. That will mean that he has engrafted and then we will have only a few days until Ian gets to go home. We still welcome visitors if you are not sick. We thank you for your prayers and encouraging words during this time.

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Day 11- Well, hello new year….

2015 snuck in while we were sleeping. Ian, Kit, and I all had plans of staying up but not one of us could make it. We are all pretty tired.

Ian has done amazingly post transplant. His nurse practitioner today said “this is just not typical”. He continues to feel well overall. He has a little fatigue but will nap for a brief period in the afternoon and then he is back to his activities. He keeps busy answering emails, reading, walking the pod, and doing crosswords. He looks forward to visitors during the day. He truly believes that it is your prayers that have made his experience so remarkable.

Yesterday was the last day Tyler was able to visit. Ian’s neutrophil count (a measure of his immune system) is beginning to drop and Tyler seems to be coming down with a cold so the doctors have asked that he stop visiting. We focused our energy on these last visits with Tyler yesterday. He came in the morning and evening.

There is a side room by the staff auditoriums just off from the lobby and we have sort of commandeered it as our own space. We spent the evening in there with Tyler alone as a family. Ian and Tyler played chase and hide and go seek until Tyler was tired and he curled up in Ian’s lap with his bottle and blanket. Those two can snuggle till the cows come home.

As Ian said goodbye to Tyler that evening in the lobby and I walked him out and put him in his car seat in the 30 degree weather, I felt my mind invaded with question of “why?” Why is this happening? Why now? Why my husband?

The totality of sadness, anger, and utter exhaustion from these past few months has caught up with me the in the last two days and it has been hard to temper the many unfelt emotions that have built up during this experience.

My husband, who is deeply pragmatic, has told me before that he asks ‘how’ more often than he asks ‘why;’ he accepts what is and moves towards making it better. He has challenged me to ask “how?” Asking how works toward solving a problem.

We have fought to not become embittered by this experience and asking why only counteracts those efforts. The truth is we will probably never get an answer to the question of why. It hurts. It just does.

I do not know what 2015 will hold for our family but I have deep hope that it will bring healing for my husband’s body and our broken hearts. I hope that 2015 will bring peace to our home and to our neighborhoods.

Thank you all for continuing to pray. Thank you for your kind words and visits. We still welcome visitors. You motivate us to keep moving forward, to keep fighting.

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Playing in lobby

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