BMT Day 25: VIDEO

Ashtyn has been in the Intensive Care Unit for one week. The ICU and Bone Marrow Transplant specialists, plus 10ish other healthcare teams, work around the clock thinking, collaborating, adjusting, writing orders, and doing all they can to manage the complexities of a body most of us take for granted. I’m healthy and never consider the precise balance my body achieves everyday and the immense importance of an immune system. While hospital staff work tirelessly to keep Ashtyn alive, I work to take care of her immediate comfort and daily living needs.

Since being admitted into the hospital for the BMT on July 31st, we’ve had at least a visitor or two almost the entire time. Jason was here from 7/31-8/4. Janet 8/4- 8/8, Ethan 8/7- 8/15, Brad 8/14- 8/17, Morgan 8/17 -8/20, my parents 8/20-8/23, and Brad 8/23-8/27. Understanding the grave concern doctors have for Ashtyn and knowing her spirits would be strengthened to have not only me at her bedside but also her dad, I called Jason and asked that he fly to Seattle as soon as possible. He arrived 9 hours later on 8/30.

I’m grateful for the brilliant minded and deeply compassionate BMT, oncology, and ICU doctors, nurse practitioners, nurses, nurses aids, pharmacists, infection disease team, nephrologists, neurologists, cardiologists, palliative care, as well as physical, occupational, speech and respiratory therapists, and more.

I’m grateful for her optimistic, hopeful, and believing Army. I love reading positive encouraging comments that show faith in Ashtyn, faith in Seattle Children’s Hospital, and faith in God. Please continue praying for 1. her kidneys to maintain health to avoid dialysis. 2. her lungs to improve and apnea to resolve avoiding a breathing tube. 3. Infections that they will all clear. 4. Engraftment!

BMT Day 24

I can’t explain 1/4 of what goes on in one day though I wish I could. Being in the hospital is never boring, almost always nonstop, and different each day. (I record all of this for Ashtyn as well because I hope she doesn’t remember most of it.) She is doing another unique, unexplainable thing. While sleeping, she’ll stop breathing for no known reason but at the same time her mental status has improved so much. She doesn't have respiratory problems when awake and is very much alert. When she’s in a deep sleep, she stops breathing for several seconds and her oxygen monitor shows her saturation’s drop. A CT scan of her brain and lungs were done, which looked fine. She is not on any sedative or respiratory suppressive drugs whatsoever. At this point no one can make sense of it. She has to wear BiPAP when sleeping which gives her breaths when it detects she needs them. Her health has become so complicated. I will write more details when I can. I don’t suspect her health will improve until her marrow makes neutrophils. Please pray she will engrafted soon and in the meantime remain stable without requiring a breathing tube and dialysis.

BiPAP respiratory support

CT Scan

That’s a lot of people just for Ashtyn

BMT Day 23

Ashtyn spends all day in bed, sometimes sleeping sometimes fully awake. Delirium is getting much better where there are clearer moments than others. She is completely calm with her current situation and at the same time unusually annoyed by me. I spend a lot of the day changing her diaper at least every 2 hours, encouraging her to do lung exercises, positioning her legs so her knees aren’t bent all day (which would make it impossible for her to straighten her legs when her body is ready to start standing), and encouraging her to put special boots on that help stretch her calves (so she won’t walk on her tippy toes when she begins to walk again). I understand why I’m irritating to her but I can’t help it. “I love your lungs (or legs) so much that I have to be annoying.” She actually doesn’t talk much and when she does it’s very short requests or short answers.

All in all there is definitely progress being seen. Her lungs are still a concern and great care is taken to not push them over the edge. She remains on oxygen. She started in the ICU five days ago needing 40% oxygen 15 liters high flow and is now down to 25% oxygen on 10 liters high flow. Aspirating liquid into her lungs is a risk we have to avoid so she’s only allowed to drink thickened water. She loves ice chips but her doctor feels the melted water could go down into her lungs without us knowing so it’s been asked that she not eat them. It’s a difficult balance for me as her advocate because I understand the grave risk of having water go into her lungs but I also want her to be comfortable and have as much quality of life as possible. I asked for speech therapy to assess her swallowing skills today. It was decided that she can swallow pills with pudding so doesn’t need an NG tube anymore. She can continue drinking thickened water, sprite, or really anything she wants. Her vigilant and caring BMT doctor is adamant about holding off on ice chips until we know she is safe to drink normal thin water. I think the option to drink whatever she wants as long as it’s thickened and can pull her NG tube out are great compromises for not letting her eat ice chips.

Recovery is projected to take awhile so Ashtyn will continue needing IV medications and fluids for weeks to come. When healthy, she is encouraged to drink 67 ounces a day to keep her kidneys happy. Currently she is receiving 200 ounces a day. Every effort is made to minimize the amount of fluid given but all the medications and infusions her body needs simply add up to more than ideal. Her heart and lungs are negatively affected by too much fluid so balancing everything and keeping organs happy will be a priority for awhile.

At this point we are happy for stability and the small improvements seen each day. We are still waiting for white blood cells to show up in her blood labs indicating the beginning of engraftment. A healthy engraftment is the entire purpose of a bone marrow transplant. The average day engraftment occurs for an umbilical cord transplant is around Day 28, give or take a week. Please pray that her new marrow will engraft ASAP.

Check out that IV pole! 12 IV pumps

Taking pills with a little bit of pudding.

Tight calves??? Not on my shift.

BMT Day 21

Yesterday and today have been relatively calm from a stability standpoint though Ashtyn continues to have a 1:1 nurse dedicated to only taking care of her and is kept busy the entire day. Reasons Ashtyn is still in the Intensive Care Unit: 1. Her lungs still have fluid and/or an infection requiring high flow oxygen. (15L 30% O2) 2. Complex fluid balance issues and trying to keep her kidneys happy is an ongoing battle. Ashtyn requires approximately 30 IV medication infusions on top of continuous IV nutrition. It’s not as simple as whatever fluids she’s given will equally be urinated out. Her body retains fluid in tissue spaces which required her to go back on a continuous diuretic Lasix to help get rid of the fluid. One downfall to Lasix is that potassium leaves the body with the urine making her potassium levels low. Abnormal potassium levels are dangerous to the heart. When continuous Lasix is given, IV continuous potassium has been needed which requires every two hour lab draws to make sure potassium is at a safe level. Fluid and electrolyte balance, IV medication administration, and kidney care is really complex to monitor and manage especially when many of the medications she needs are very hard on kidneys. She requires a total of about 45 scheduled IV plus feeding tube medications as well as insulin and blood products when needed. Emotionally she seems to be very calm, patient, and comfortable. I see baby-step improvements everyday as she is slowly becoming stronger and more alert. She is still in a diaper and wears a gown. Her muscles are way too weak and tight to even stand up. When throwing up, she gives little warning and can not be trusted to protect her airway completely without someone sitting her up, making her lean forward, holding the barf bag, and talking her through it. I suspect as we continue seeing improvements we’ll also start seeing her become more independent in the coming days. The Next Big Steps and prayers needed: 1. Continual lung and kidney improvements. 2. I hope soon she’ll be strong enough to swallow pills instead of using a feeding tube. 3. Her body is quite deconditioned. I hope she can begin gaining strength and mobility. 4. Engraftment would be amazing!!! I hope to see white blood cells in her blood soon indicating engraftment day is approaching.

BMT Day 20 VIDEO

Ingrid’s been a nurse in the Intensive Care Unit for 18 years and was Ashtyn’s nurse for the last 3 nights. I asked, “Compare 3 nights ago to now, what do you think?” Her answer, “She is a lot stronger and doing so much better.” From our perspective, Ash is looking great. She is more alert and bright eyed. Her kidneys are improving with a normal creatinine level and got off a kidney helping drug, Lasix, tonight. She is not taking any sedating drugs and is sleeping better than I’ve seen in 3 weeks. Her lungs have improved as well. Her respiratory rate is normal, which hasn’t been the case for several weeks. She is no longer working hard to breath and her lungs sound better when nurses and doctors listen with a stethoscope. Her BMT doctor who was extremely concerned yesterday had an obvious look of happiness and relief to see her health was turning a corner for good and no longer heading towards a breathing tube and dialysis. I asked for prayers for her kidneys, lungs, viruses, sleep, and white blood cells. All those prayers are being answered. I even suspect we might see white blood cells in her labs soon because her mouth and tongue are looking so much healthier. It’s all so remarkable how quickly her health is improving. Another really amazing thing is, I don’t see any suffering. I wrote a post a couple days ago about our suffering, wondering how much more we could handle. Since then I promise Ashtyn has not been suffering. Even in the ICU, I feel we are in a calm ocean right now with more strength than we’ve felt in awhile. There is a happiness in Ashtyn that is obvious. I feel happiness too. Even when she feels uncomfortable, nauseated, or is throwing up, there is complete peace in her demeanor. Of course she’s not out of the woods and has a lot still ahead but she’s totally on the right track and I pray everything will stay that way. Please continue with your prayers and fasts for her lungs, kidneys, viruses, engraftment, sleep, alertness, strength, happiness... prayers are being answered. Thank you to our Father in Heaven and everyone’s faith for making it all happen.

BMT Day 18 VIDEO

There are two facts going on in the Intensive Care Unit at Seattle Children’s Hospital.

1. The fight in Ashtyn is stronger than ever. Not a word or look of doubt, fear, or desire to give up is heard or seen. She is determined as ever. How do I know? I see it in her eyes, in her actions, and I can just feel it. Today she was on high flow oxygen. In the middle of the day she had quite a bit of excess fluid in her body. Just coughing and throwing up exhausted her enough to notify me that she was having a difficult time breathing. She agreed to put on a very uncomfortable nasal prong device BiPAP that blows air into her lungs. It’s quite overwhelming and worsens nausea. Despite the fact that BiPAP is difficult to get used to and she was still a bit delirious, her eyes closed and all her concentration was focused on relaxing and telling herself, “I can do this.” Her strength amazed everyone in the room. You can see a glimpse of it in the video. All day she dealt with BiPAP, nausea, bottom skin breakdown, and little sleep like a total champ. You should see her gratitude for cold water. Her sodium is high which makes her thirsty. She’s at risk for aspirating so can only sip thickened water. I wish you could see the look of Heaven in her face when cold water goes down her throat. “Ohhhh that’s so good!” Her morale is good.

2. The BMT team is extremely concerned about Ashtyn. They know she is very sick and fear her body is on the verge of falling off a cliff she wouldn’t be able to recover from. Her kidneys are on the edge of needing dialysis. Her lungs are on the edge of needing a breathing tube. If she gets a breathing tube, the fear is that it would be difficult to get her off the ventilator. Her lungs may or may not have an infection but she’s too unstable to do a bronchoscope to find out. She does have three viruses (CMV, Rhinovirus, and Adenovirus). There are so many medications she needs that are hard on the kidneys. It’s very complicated giving her everything her body needs without putting her into organ failure. I could go on and on about how complicated she is medically with her imbalanced electrolytes, frequent lab draws, and constant medications but I think it’s enough to say that not only does she keep me constantly busy but her 1:1 ICU nurse doesn’t stop. She also has her own bedside nurses aid to lighten the load.

The next two days are absolutely critical that Ashtyn’s health turns a corner for good rather than getting on life support and dialysis. We would be so grateful for prayers and fasts at this time. Please pray 1. for her kidneys that they will handle all the medications needed without failing. 2. her lungs will recover without needing a breathing tube. 3. viruses will be easily managed. 4. that she’ll be able to sleep. 5. for white blood cells.

BMT Day 17 VIDEO

Ashtyn was transferred to the Intensive Care Unit again today around 6:00 p.m. but I want to look at it in a positive way, ok?! Around lunch time her oncologist Adam Lamble stopped by to say Hi. We talked about how difficult this BMT has been. He said something interesting, paraphrasing, “In the ideal world, I don’t want Ashtyn to suffer, but if I came in here today and saw that this BMT was easy, I wouldn’t say anything but I’d be very concerned. Her BMT shouldn’t be easy, especially being her 3rd. The chemotherapy and radiation given were meant to destroy her leukemia and destroy her marrow. We want some struggle like we want some graft verses host disease. When chemo and radiation destroys what it should then the body should act somewhat destroyed too.” He didn’t expect she’d be in the ICU six hours later but I’m going to take what he said and be optimistic about this BMT and the struggles that have come with it. Comparing her three transplants: Ashtyn’s 1st transplant wasn’t as difficult as the 3rd. The biggest struggle was a deconditioned body and neuropathic pain in her feet. The 2nd transplant was no where near as difficult as the 1st or the 3rd. The biggest struggle was viruses that kept her in the hospital for a total of 50 days. This BMT has been straight up brutal from the beginning. She’s on the moderate, nearing the severe end of the spectrum for BMT side effects but hey, she’s still on the spectrum. Today included a CT scan of her lungs that showed concerning signs of possible infection and a worsening chest X-ray. She’s already on an antifungal medication and antibiotics so we’ll have to wait and watch to see what direction her lungs will go. Her respiratory efforts increased requiring her to go to the ICU for added respiratory support. They wanted to put her on BiPAP but she refused so she’s on high flow oxygen for now and tolerating it fine with good blood gases and saturations. Her heart has had a prolonged QT rhythm for a couple years and today, for the first time, it caused a couple quick ventricular tachycardia (extremely high heart rate) episodes which is another reason to watch her closely in the ICU. Her liver is ok. Her kidneys are struggling but holding up. Being in the ICU isn’t ideal but prayers are still being answered. Ashtyn is more and more alert, is sleeping decent, and has an obvious fighting spirit. Her skin breakdown is looking better. Pain is not as much of a problem. Today please pray 1. that her lungs will be strong and heal quickly from whatever it is that’s causing problems avoiding intubation. 2. her kidneys will be strong and do all that they need to do to avoid dialysis. 3. her body will balance itself where fluid will stay in her arteries and veins instead of leaking into body tissue where it doesn’t belong. 4. for Engraftment! (The way we know if a new marrow is engrafting is by seeing white blood cells in her blood labs. So far there are zero white blood cells of any kind. Once we see a good amount of white blood cells in her labs, she will be declared as “engrafted”.)

VIDEO

She’s working hard, finally sleeping, and is not giving up.

BMT Day 16

Tonight is a night I cry for Ashtyn. I watch her suffer followed by relief followed by suffering followed by resolve only to then suffer again followed by peace and calm. I often wonder how much more my heart can handle. I often wonder how much more she can handle. But somehow, some way we kick ass again and get through another day. I’m so proud of her. I ask her everyday, “Do you know how strong you are? Do you know you’re almost there? Do you know there are thousands of people on the sideline cheering you on to the finish line? Do you know?” She says “Yes” but she really has no idea how remarkable she is. She has no idea how many people love her and how many lives she has impacted for good. I believe one day she’ll know but for now she is a humble, faithful follower of Christ who is doing all that is asked of her with perfect hope that all her suffering will be compensated 1000 fold with blessings in the future. But, our positive and eternal perspective doesn’t change the fact that this experience is heartbreaking, painful, stressful, nerve wracking and pure hell sometimes. It’s as if we are in a boat in the middle of the ocean. Raging dark storms stretch us to our limits followed by calm waters and sunshine. The calm doesn’t last long before another horrendous storm hits that pushes us again to the edge before calm winds come again. The things is, the storms are getting us to where we’re meant to be and where we want to go which is a healthy, cancer free joyous life for Ashtyn. There’s no way we could do this alone, without support from family, friends, and strangers. Prayers, love, and encouragement gives us the strength to stand back up each time we’re knocked down with our fists up in the air ready to fight the next blow to the head. Please pray 1. Engraftment will come ASAP providing necessary white blood cells. 2. Painful skin breakdown will improve instead of getting worse. 3. Pain will go away. 4. Infections will stay away.

BMT Day 15

Last night I tried sleeping from 2:00 a.m. until 7:00 a.m. I’m thankful for the nurse and nurses aid who sat by the bedside all night talking Ashtyn through confusion. She tried pulling out her central line, getting out of bed several times, and didn’t sleep at all. I would hear her yell, “No!!!” and then soft voices from the nurses calming her down. I stayed in bed trying to get as much rest as possible. It was a good thing because today could not have been more packed. At 7:30 a.m. I got in bed with Ash to help keep her calm. Delirium is not a typical side effect of a BMT so something unknown was causing the problem. The BMT team, neurology, nephrology, psychology, cardiology, and infectious disease were on board to find answers to why Ashtyn was experiencing worsening delirium. My mom and dad flew to Seattle yesterday. During the middle of the busy day, I asked Ashtyn if she wanted a blessing. She shook her head “No.” “Do you know what a blessing is?” She shook her head, “No.” I asked, “Do you know what a prayer is? A blessing is a special prayer for you. Do you want one?” She nodded “Yes.” My dad gave Ashtyn a priesthood blessing. The blessing validated how strong she is for enduring everything throughout the past years. “Ashtyn, you must not give up now. My prayer for you is that you don’t give up.” During the blessing it dawned on me that Ashtyn had in part given up. It’s not that she wants to die. Her body is exhausted to the core and so is she. She’s physically, emotionally, and spiritually spent with very little strength to keep fighting. I’ve seen her give up several times in the past during her years of fighting cancer. The girl has the strongest mental strength imaginable. When she is determined to beat cancer, she breaks all odds. When she gives up, her entire body declines. She knows how important her mental fight is to her survival. After the blessing Ashtyn was more alert. I thought it was time for a little tough love encouragement. “Have you given up?” She nodded yes. Here are some of the things I told her. “You feel you have no control. You have to do so many things you don’t want to do and are told what to do all the time. But ya know what? You have more control than anyone here. You can choose to fight or give up. It’s your choice. Do you want to be a nurse? (Nodded Yes) Do you want to get married and have babies? (Nodded Yes) Do you want to die (shook head No). Then don’t give up. You are almost done. I see the finish line. It’s like running 100 miles and quitting when you only have 1/2 mile to go. It would be such a waste to give up now. Push through it and don’t give up. The end is the hardest. It’s like climbing a mountain. You are almost to the top. You’ve come so far. Don’t give up now. Are you going to give up? (shook head no). Are we going home soon? (Nodded Yes). Do you keep telling yourself “I can’t”? Stop telling yourself that! You are strong and can do anything. Keep fighting. You are almost there.” I will have to give her continual pep talks because her mental status isn’t perfect. Delirium comes and goes and her short term memory isn’t too sharp. I do see more alertness and fire in her. On the medical side, tests and procedures were ordered to rule out possible causes for the delirium. Throughout the day she got a heart echocardiogram, electrocardiogram (EKG), chest X-ray, and a electroencephalogram (EEG). She was put under anesthesia with a breathing tube to get an MRI of her brain and a lumbar puncture. Results have all come back normal. The mind is a powerful thing. Please pray 1. Her mental status will improve and she will sleep without interruption. 2. Her skin breakdown will heal and not be so painful. 3. Engraftment will occur as soon as possible. 4. She’ll feel the energy and help from Angels to keep fighting.

Ashtyn’s not a quitter and we won’t let her give up now.

BMT Day 14

When Ashtyn was transferred to the ICU one week ago, my focus turned to her kidneys: that were headed for dialysis, lungs: not wanting her to get a breathing tube with her increased oxygen needs and labored breathing, and her brain: where she was completely confused. One week later her kidneys are still improving and her lungs are doing great. Now we are in the thick of dealing with BMT side effects and not having an immune system as we wait for her transplant to engraft, which will provide white blood cells necessary for health. I don’t have a video of Day 14 because most of the day you would never want to watch. She not only has her own 1:1 nurse day and night, but for the first time since the ICU she has a nurses aid who is sitting at her bedside constantly at night so I can sleep. I will describe several things that kept a combination of one to four nurses, nurses aids, and/or doctors in her room around the clock. Ashtyn is delirious. I have no answers only what I see. She hasn’t had REM sleep in well over a week. Something in her brain won’t let her sleep. She will doze off into only a light sleep to then be easily woken up. When left alone she will stare into space instead of falling asleep or sit up in bed confused. She’s had hallucinations that fire is in the room or sees stairs she wants to go down. Most of the time though she shows no emotion at all. If asked, “Where are you?”, she’ll sometimes say “hospital” but many times she doesn’t know. A lot of the time she’ll only nod “yes” or shake her head “no” to answer a question. Either way it takes a long time for her to process thoughts and provide responses. She is extremely somber, only talks if prompted to, and gets visibly anxious if asked too many questions. She is no where near oriented enough to go to the restroom. She’s in a diaper and completely depended on being cleaned. It takes two people to clean her because she has skin breakdown on her bum that needs special care. Ash doesn’t voice an opinion or make a fuss when four strangers give her a bed bath. She still is able to take pills but I have to talk her through it step by step, “Sip water. Now keep it in your mouth. Here’s your pill. Swallow.” Half the time drinking pills triggers her to practically projectile vomit green bile. Her BP’s are slightly high, glucoses are high and need insulin, Sodium is up, potassium is low, needs platelet transfusions daily and red blood cells often. She can’t brush her teeth so I do it for her. While cleaning her mouth, chunks of dead skin will latch onto the toothbrush or oral sponge. Once I’m satisfied her mouth is clean, I apply ointment to her cracked lips. She doesn’t eat, walk, talk, watch TV, get on her phone, or do anything a normal 17 year old would do. This is the life of a bone marrow transplant recipient in the thick of it. Please pray that 1. She’ll sleep. 2. She’ll become more alert and oriented. 3. Engraftment day will come as soon as possible.

BMT Day 13

Ashtyn’s body made some impressive steps in the right direction. Previous to today, pain was a huge problem but now it’s all but gone. Just the day before she was on a continuous pain narcotic called Dilaudid and now rarely needs pain medications at all. Previous to today, muscle weakness was bizarre. She couldn’t use a muscle without it suddenly collapsing. The thought of even holding a cup was not going to happen let alone sitting up. Tonight she sat up on her own for over five minutes without a problem and collapsing muscles were non existent. Previous to tonight she’s been on 2 liters of oxygen with very little ability to breathe deeply or cough. Tonight oxygen is no longer needed. For over a week, sleep has been such a struggle for Ashtyn. I am exhausted, and my body isn’t going through what hers is, so I can only imagine how exhausted she must be. Instead of sleeping, her brain is not allowing her to sleep. It is a type of delirium that no medication can help. Tonight she actually fell asleep. I would love to hear more deep breathing sleep from her because it’s music to my hears. I hope good sleep will continue. I’m not sure how pain, muscle failure, oxygen needs, and insomnia all nearly vanished within a day. In addition to prayers, I do know that there is a fight within Ashtyn that can not be smothered by any limitations her body has. When a muscle fails, she tries again. When her brain processes thoughts slowly, she’ll keep trying to get the words out. When she throws up medications, she’ll take them again. When it’s easiest to do nothing, she will do whatever is asked of her and more. She does not quit no matter how delirious, disoriented, sick, uncomfortable, or worn out she is. There is no stopping this girl. Please pray 1. she will become more alert and oriented. 2. she will sleep restfully and normally. 3. her transplant will engraft as soon as possible.

Facetiming Uncle Jared 

BMT Day 12 VIDEO

It was another day of big changes. Watch the 7 minute video of the days progression. You won’t want to miss the ending. I promise. The day started at 7:30 a.m.. Ashtyn was borderline going back to the Intensive Care Unit. The ICU risk nurse was notified and all eyes were attentive and watchful. One struggle was her lungs. Ash was too weak to walk, stand, and sit up. She also didn’t have the strength to take deep breaths and cough strongly. With a lack of activity, it doesn’t take long for lungs to diminish and secretions to build up making breathing less and less effective. Another struggle was balancing pain control without sedating her too much. It seemed through the night she was either uncomfortable in pain or completely out of it. In addition, her muscles were acting real funky. Anytime she used any muscle against gravity, whether it was her legs, arms, wrist, back, neck... the muscle would briefly collapse. I went back to my previous post and made sure the prayers I asked for would cover her struggles. By 11:00 a.m. there was a noticeable difference. She was more alert, able to drink her medication pills, do lung exercises, and tolerated being put in a lift machine, raising her above the bed so an air mattress could be placed to help with several skin tears and breakdown. By the end of the day Ash was talking to nurses, pain was completely manageable, lungs were doing better, muscle strength improved, and there were signs of kidney improvement. Every specific prayer I asked for was answered. Her night nurse left at 7:30 a.m. and returned at 7:00 p.m. to a much stronger, alert, comfortable, stable patient. I didn’t even ask her to, but she told me she went home and had her family pray for Ashtyn! Everyone in Ashtyn’s Army has a part to play and it’s amazing to witness the blessings. Doctors, nurses, nurse practitioner, and CNA’s are amazed by Ashtyn every single day, as we all are. It’s no joke, remarkable things are happening and are noticeable even by those who work with BMT kids all the time. I’m grateful for the calm and joy felt in her room.

Please continue praying for 1. Increased alertness. 2. Manageable pain. 3. Healthy skin. 4. Strong body and lungs. 5 Improved kidneys.

VIDEO

Bone marrow transplants are hard and hard work. I posted a 4 min 50 sec video to give you a small glimpse. Please pray 1. that her pain will be managed. 2. that her body will gain strength. 3. she will recover from medication toxicity (particularly tacrolimus) 4. potassium levels will stabilize. 5. kidneys will continue to improve. A couple stories: While Ash was in and out of sleep in our quiet hospital room, a housekeeper mopped the floor. I was sitting on the couch and heard the sweetest, “Thank you” from Ashtyn as she received a “You’re welcome” in return. Before going to bed last night Ashtyn seemed to be amazed. “I can’t believe I am able to do this.” My response, “That’s what we’ve been saying. We’re all amazed at what you can do. You are seriously a Rock Star.”

BMT Day 10

I’m going to set the scene so the miracle can be best understood. Ashtyn is on Day 10 of her bone marrow transplant. She is in the thick of the transplant... meaning, the toll it’s taking on her body is at the extreme. The chemotherapy and total body radiation given two weeks ago is at its peak for wrecking havoc. She continues to have zero white blood cells to heal the body. Visual proof of that is she has ulcerations in her mouth and skin breakdown because new cells are not able to replace the cells that have died. This is all to be expected. In addition to the “normal” problems of a transplant, complications arose. Tuesday we found out she was septic with a blood infection and also realized her kidneys were significantly injured. The infection came because a bacteria in her body made its way from her intestine to the blood stream and the prophylactic antibiotic she was on didn’t cover that particular bacteria. Her kidneys were injured because she had two prior transplants that caused a great deal of stress to the kidneys decreasing reserve for the many medications she’s on. Bacteria was multiplying in her blood stream while numerous medications were building up in her system without the help of her kidneys to get rid of them. When she got to the ICU Tuesday it was projected that she was headed for dialysis and possible intubation. On Wednesday morning the entire healthcare team discussed her plan of care thinking she’d be in the ICU for several weeks. Being on Day 10, it wasn’t likely she would bounce back quickly but rather she’d get worse because at that point she had nothing in her favor. Generally recovery comes once white blood cells begin to be present which is still easily over a week away. What Ashtyn did have in her favor was trust in God, a fighting spirit, and prayers of many. She was given a priesthood blessing that said specifically, “You will recover quickly because of the hundreds of prayers being said on your behalf.” I didn’t know what “quickly” meant but I sure didn’t expect that 24 hours later the team would get together again to discussed the plan and be surprised that all their predictions were thrown out the window. She was ready to leave the ICU. “This is not what we expected.” That’s our miracle magnet where it would be difficult for anyone to explain any other reason she recovered the way she did. Her health isn’t perfect but it is well enough to be out of the ICU and back on the cancer floor. The first thing she wanted to do was take a bath and put on real clothes, something she didn’t care about yesterday. I heard several times today, from hospital staff, “This kind of recovery doesn’t happen, not on Day 10 of transplant especially having had two previous transplants.” “She’s a miracle girl.” Ashtyn’s response, “I don’t understand why they keep saying that.” One day she’ll understand.

Thank you to all of you for your support, concern, thoughts, and prayers.

BMT Day 9

I keep trying to post an update but her status changes so quickly. The night was ok. Delirium and confusion was pretty intense. Ashtyn would yell, “I need my mom!” I responded, “Ash, I’m right here.” Looking straight at me with almost disgust she said, “You are not my mom!!!” Pointing at Ethan I asked who he was. “That’s Ethan and you are not our mom!” She was up and down in bed constantly, wanting to leave, not knowing where she was or really even who she was. The best thing was to allow her to move however she wanted. When she wanted to get out of bed, she would sit at the edge of the bed, wrap her arms around my neck and I would stand her up with a nurse and/or nurses assistant to help steady her. Ash would push me wanting to walk away but I kept her close to the bed and let her feet move. “Oh look Ash, there’s your bed. Do you want to lay down?” She would get back in bed to then again sit up and want to get out of bed again. There wasn’t anything else we could do for her except support and try to orient her the best we could. By 2:00 a.m. she fell asleep for about 1 1/2 hours which was awesome. Since 5:30 a.m. she has been opposite of agitated and quite comatose. She will wake up from time to time and knows who I am. A CT scan was done to check for brain swelling. It came back normal which is a great thing. A lumbar puncture will be done soon to check for viruses. An MRI is scheduled and a central line might be started for continuous renal replacement therapy (dialysis). Her kidneys continue to show that they are injured and her blood cultures are still positive for bacteria. Her breathing is very labored so she may be getting a breathing tube. Her blood pressures are now low so a medication called norepinephrine may be started. This girl has so much going on. Bottom line, this is Ashtyn’s 3rd bone marrow transplant. Though these complications are severe, the BMT team is not entirely caught off guard by what they see. It was always anticipated that problems would arise due to how complex a transplant is and how her organs have already been through so much with having had two previous transplants. Her body always seems to take the most difficult path, stumping medical professionals along the way, giving them a run for their money, and then she always amazes everyone by pulling through unscathed. That’s our girl. She is in desperate need of prayers. Pray for 1. her Spirit that it will continue to have that strong fight within. 2. The healthcare team will be guided, helped, and blessed along the way. 3. Her body will recover allowing her to be the nurse, wife, and mom she wants to be.

BMT Day 9: VIDEO

This video are clips of today from about 8:00 a.m. to 8:00 p.m. Notice the improvement of her mental status and her respiratory efforts! Amazing!! I hope you can see the improvements. My post this afternoon mentioned she needed a lumbar puncture to check for viruses, an MRI to check for brain problems, a central line for continuous renal replacement therapy (dialysis), a breathing tube may be needed, and norepinephrine was at the bedside for her dropping blood pressure. Not one of those things ended up happening today. She immediately started getting better the instant I posted on social media what was going on and the need for prayers. What!!!??!! Seriously! Put yourself in the shoes of the intensive care unit, BMT, neurology, and kidney doctors when they were projecting the likelihood that Ashtyn’s health would continue to decline. Plans were in place preparing for the complications they foresaw. By the end of the day her health was in a much better place without needing those medical interventions! What a blessing! The less invasive interventions the better! What we need now is for her kidneys to continue to get better. She is so much more alert tonight than last night. Unbelievable yet totally believable! Prayers are being answered.

BMT Day 8

At 8:00 a.m. I was informed that blood cultures came back showing bacteria in Ashtyn’s blood stream. She has a life threatening blood infection. On top of that, medication levels have been high for a couple days indicating that her kidneys are not working properly. There are so many problems that come from injured kidneys but one is, medications build up and build up in her system instead of being excreted in urine causing a lot of confusion and irritability. I’ve never seen Ashtyn so confused and agitated. It seems like her body is tolerating the blood infection as she is being treated with antibiotics. Every 24 hours blood cultures will be checked hoping they will be negative for bacteria soon. Delirium has been such a struggle. It’s not certain what’s causing it but for now the best guess is multiple medication toxicity. By 1:00 p.m. it was decided she needed to be in the ICU mainly because of her mental status and kidney function. As of right now, not only does she have a nurse who is often doing medical interventions in the room but she also has a nurses aid 24/7 at the bedside because several times an hour Ash sits up and tries to climb out of bed to leave. Some may wonder why I don’t lose faith. A couple Facebook comments I received today explains why: “Maybe the ICU is going to be a tender mercy - somehow!” And “Praying that you look back on this and see it was just another step.”

ICU

Ashtyn was moved into the intensive care unit with bacterial blood sepsis, struggling kidneys, and significant confusion and delirium. Please trust God. Please trust Ashtyn’s strength. Please trust your own prayers in helping her gain health quickly. She is in the best medical hands, got a priesthood blessing, and now will continue benefiting from all your prayers. Please pray for her. Pray 1. for negative blood cultures. 2. that her kidneys will quickly recover not requiring dialysis. 3. her brain will recover quickly bringing back our alert Ashtyn. I believe.

BMT Day 7 VIDEO

The last several days nurses, doctors, and everyone else have been managing so much to keep Ashtyn safe. There are always new orders and approaches to balance her health. Most recently it has been low potassium levels, high anti rejection medication level, and fevers. Blood labs are frequently done and blood cultures are daily. There are also a ton of medication infusions throughout the day and night as well as almost daily red blood cell and/or platelet transfusions. No corners are ever cut when it comes to providing the best care possible. Nurses aids and I change her diaper regularly, give her bed baths, and clean her mouth. Occupational therapy and physical therapy come twice a day to do range of motion exercises. Ashtyn’s being cared for around the clock and is as dependent as a brand new baby. She spikes a fever at least once a day and only occasionally wakes up on her own. I’m grateful she’s not in pain, sleeps deeply, and is out-of-it enough to not feel the entirety of what her body is going through. I’m grateful for good vital signs, kidneys and liver that are tolerating all the medications, and lungs that haven’t been negativity affected by lack of movement. There is both strength and calmness felt in her room. Please pray for 1. no complications. 2. a fast engraftment where cells will start being produced allowing her to begin recovery. 3. her body will stay as strong as possible with all that it’s going through.

BMT Day 6

Ethan has been in Seattle for the past five days and isn’t allowed to sleep over at the hospital. At 1:30 a.m. last night I left the hospital to drive Ethan 0.4 miles to the Ronald McDonald House. After tickling his back and tucking him in bed, I got back to the hospital around 2:15 a.m. and noticed Ashtyn was shivering in bed. I took her temperature that showed 101.3. It was not just her temperature that concerned me, it was also her blood pressure that was a little lower than previous, she was more out-of-it, not getting up to the bedside commode, unable to drink pills or breathe in the incentive spirometer. Her respiratory rate was higher, she was restless and miserable, and could no longer verbalize thoughts. The nurse took blood for blood cultures, gave Tylenol to decrease her temperature, and gave a high dose of hydrocortisone which helps the body react to stresses. Ashtyn is already on a really good antibiotic called Ceftazidime for bacteria infections plus Valacyclovir for viral infections and Posaconazole for fungal infections. Because fevers aren’t necessarily uncommon in this setting and she’s already on a antibiotic, additional antibiotics are not started unless a bacteria grows in the blood culture. The problem was, to me Ashtyn behaved as if she was septic. I knew her side effects could be from the bone marrow transplant process, but I wanted sepsis treated immediately in case she had an infection. I explained my rationale and the doctor agreed to start another antibiotic Vancomycin for a day or two, in case she had a blood infection that ceftazidime doesn’t cover. Throughout the night, vital signs were taken every 15 minutes because Vancomycin was given over 2 hours and was a new added antibiotic. The nurse then gave a platelet transfusions. In the morning Lasix was given because Ashtyn’s body had retained over one liter of fluid. A red blood cell transfusion was also given in addition to all the other medications scheduled. She is described as being “medication heavy” which means she’s a very very busy patient. There’s also a balance we are trying to maintain between using pain and sedative medications to keep her comfortable but not too much to where she isn’t responsive. Ashtyn literally slept constantly today. Sedating medications are going to be given less frequently to see if she wakes up more. Her temperature was just taken and is back up to 101.5. She’s officially at rock bottom of the transplant. It will be a constant effort to support her through the next several weeks. I’m grateful her vital signs are good, lab values are able to be balanced, blood cultures are negative so far, there’s no serious complication, and she gets to sleep through one of most miserable experiences I’ve seen. Please continue to pray for zero complications while we wait another week before signs of recovery begin.

BMT Day 4 and Day 5

A glimpse into the life of a fighter. 

BMT Day 4

Ashtyn is doing as expected. She gets a little worse everyday but is still where she should be. The decline is visible. One week ago she was awake much of the day, walked, talked, and ate. Days later she could only walk to the bathroom, which then worsened to only being able to get out of bed onto the commode. Today she slept pretty much all day, woke up a few times to go to the bathroom, uses a diaper without knowing, says few words, and is no where near being able to socialize, eat food, or do much of anything. I’ve always said that BMT’s take a patient to deaths door by destroying her marrow. Without all of the medical support given in the hospital, she would die pretty quick. She is literally being kept alive by the healthcare team balancing blood products, antibiotics, antiviral and antifungal medications, IV fluids and nutrition to provide needed electrolytes, glucose, vitamins, fats, and fluids. Everything is monitored frequently and thoroughly. Many other medications are given throughout the day to help support organs. My part is to move her body for her, keep her clean, and encourage her to do what she can. We all watch very closely for where added support is needed. Her job is to sleep. Every time she wakes up it catches her off guard with how horrible she feels. We will wait about 2 more weeks for the donated umbilical stem cells to make their way to her empty bone marrow space and start building a new marrow that produces cells. That is when she can start healing and recovering. Please pray that zero complications arise. Her body can hardly handle a uncomplicated bone marrow transplant. I would hate for her body to have to deal with more than it already has too.