Hello from home! They let us go home last night. Daniel's numbers were looking good enough they decided they could trust them until Friday, his next chemo treatment, so with many a caveat, warning, worst case scenario, and instruction, and a big bag full of drugs, we packed up our room, much more stuff than we had arrived with, and a week's worth of laundry compounded by several vomiting episodes, jammed it, three adults and two babies into the vehicle, and hit the road for Loveland.
Thank you, dear people, for all of the thoughts, prayers, calls, texts, Facebook posts, well wishes, gifts of things from hospital-stay creature comforts to snacks to a private in-room two-week-old photography session for little Alex...it all means so much to us. We are humbled by the enormity of the things we are just supposed to accept from others without putting up a fuss. This experience may end up making us have to become more willing to accept help. We hope one day we will be in a place to pay it back, or at least pay it forward.
Day before yesterday, the resident came in for rounds and told us to expect about two more weeks in the hospital as they tracked Daniel's neutrophils (the white blood cells most responsible for immune response, affected by his cancer limiting his body's response to produce them) back up as he responded to chemotherapy, so we nodded and decided perhaps two of the three of us (godmama Aunt Mary is still here for her long-ago scheduled "baby Alex visit", which turned into a "help in the hospital visit" a few days before her arrival) should go home to get the car so we could have a vehicle there while B drove back and forth to work. Then, in a few hours, the resident poked his head back in and said scratch that, they decided they could track him during clinic visits instead, since his red cells and platelets were looking good from all of the transfusions. However, before going home, they still needed to give him one more blood transfusion- his red cells were 7.2, they usually didn't transfuse until under 7, but since we would be unmonitored for two days at home, it seemed wise to get them up again.
Night before last, Aunt Mary drew Daniel cuddle duty, since daddy was working, and I got the couch with Alex. Around 2:30, Daniel woke up wanting to nurse, so we traded spots. Nursing apparently did not cure as many ills as he had assumed it would, because before long he started whimpering and insisting I hold and squeeze his hands and wrists. I called for some pain meds for him, and they did the trick. Before long he was passed out again. When the sun came up, remembering the food fight of the last several days, I also immediately called for Zofran for nausea, even though he had yet to act too nauseated. Look at me, the natural, anti drug mama. Anticipating seeing my child miserable makes me fold like origami. And I'm ok with it, too. At this point, so many drugs are coursing through him, I figure what's a few more to make him feel better. And it worked. He kept his meds down, and two hours later, even braved a tiny piece of egg, which worked as the magical "gateway food"- after he had bravely swallowed it and it stayed down, he braved eating the rest of his eggs and half of his apple.
The first food in 48 hours (and the fact that it had been three days since his last chemo) perked him up a bit, and he had a fairly good morning. But at noon, instead of lunch, he got a bag of Pegaspargase (chemo) hooked up to his IV, and he went down pretty fast, lying curled up on his bed, sweating so much his pillow was soaked, his eyelids droopy, his color pale. He was not interested in so much as a sip of water after that. Two hours later, after his bag of chemo was done, he got a bag of blood, which was done two hours later, then we had to wait for labs to come back, and finally, meetings with the pharmacists, nurses, and doctors with instructions for going-home contingencies and paperwork, they pulled the covering off of his port, filled it with heparin, removed the tube and needle, and we were officially a "real boy", unhooked from the IV pole, for the first time in six days. Not that he felt up to celebrating. He hung limp in his dad's arms, face pressed into his chest, as we walked out of the highly-immuno-compromised children's cancer unit and down to the lobby with our massive wagon load of stuff. Aunt Mary put him in his carseat, trying not to smash his port with the straps, and away we went, both Daniel and Alex crying in the back seat. Both were asleep by the time we got home, and we walked into a freezing house (of course our furnace had quit working again- the landlord's father in law was here fixing it while we were in the emergency room on the 22nd, and we hadn't been home since, so it ran and made a nice warm house while we weren't here, and had long conked out again by the time we got back home), dug in the freezer for one of the meals sent up here with my parents by Marci, Kayla and Kari (back when we thought the only source of stress around here was a new baby, before it turned out that the new baby was the source of the least stress!) and sat and stared at each other, wondering what we should do now. And then B's phone rang, it was work calling him to come in, in spite of him having told the day dispatcher he would not be coming in. The night dispatcher didn't much care for his excuses, saying that they were short on drivers and strongly implying it would be best for him to spend the night driving, so he grabbed a bite to eat, took a shower, and headed out into the dark for another long night, in spite of having slept only three hours of the last 36. As of now, I have not gotten his text or call that he is parking his truck and going to sleep, so I am assuming he either forgot to text and is sleeping, so I should not bother him and let him sleep, he is still working, so I should not bother him because he is spectacularly growly by virtue of being spectacularly exhausted, or I suppose there is always the possibility that he fell asleep and left the roadway at some point last night, but kinda assuming if that was the case, I would have been notified by now. I did give him a stern warning on his way out the door to not be doing such things right now. Girlfriend can handle a toddler with cancer and a newborn, but a husband seriously injuring or killing himself falling asleep at the wheel seems a bit daunting at this precise time in my life. Just saying.
And now I sit here in the clothes I put on yesterday morning, with teeth unbrushed since yesterday, because after B went to work lat night I went to lie down with two little boys to cuddle them to sleep, and the cuddles worked a little too well- I cant even recall if they fell asleep or not, I just awoke at 2 am with a very hungry two week old crying to be fed, and soaked from diaper to armpit. At some point Daniel also awoke and nursed himself back to sleep, but mostly last night was spent comatose by all residents of this household except the one out driving.
And now the sun is shining, I'm sitting here curled in my recliner with a space heater close by, nursing Alex, Daniel still sleeping, laundry tumbling in my dryer thanks to Mary being a bit more motivated than I am this morning, and honestly, the last week is starting to seem like a really weird bad dream. Because from where I'm sitting right now, it's pretty easy to simply remove that chunk of time and pick right up where we left off, back when all of Daniel's problems were simply the terrible two's. But a look at my kitchen table, littered with bottles of medicine, and at the space beside the garage door, piled high with suitcases, bags, and information booklets reminds me that I probably can't afford to do that. For at least three more years. But here's to sanity, the ability to drink at least small amounts of wine, sleeping in one's own bed, and friends and family who make it all a whole lot better.
Wednesday, April 29, 2015
Monday, April 27, 2015
Grateful dread
Things that make us thankful:
-That we are "only" dealing with a highly curable cancer.
-That a series of failed jobs brought us to the front range so that when our boy was diagnosed with something that only 2,700ish children in the US get every year, we were close to a top-rated children's hospital. If this had happened in Kansas, everything would have moved much more slowly. It's just one of the things that happens in rural areas.
-That I was stubborn through my pregnancy about not weaning Daniel, feeling bad about having gotten pregnant again before the now-recommended at least two years of breastfeeding were up. I forced myself to nurse him through major nursing aversions as my hormones went crazy, my milk dried up, my nipples felt like they were on fire, and my skin crawled, with the only reward being the sheer nirvana on his face as he snuggled into my breast and instantly relaxed. As soon as Alex was born and my milk began to come back in, Daniel discovered he could not only comfort nurse but actually get milk again, and he and I shared quiet moments together in the hospital, as well as at home for the few days we were there between hospital stays that helped him adjust to the new baby and realize he would do just fine sharing his mama with his new baby brother. And now, we are in another hospital, one where the staff is very supportive of toddler breastfeeding, and Daniel has this one thing he knows will bring him instant comfort whenever he is sad, scared or uncomfortable, that he can ask for whenever he needs. It is a way for him to feel loved and secure, or just needs to have his mama all to himself. And I know that I am personally making antibodies for him that he can no longer make for himself. I am literally carrying as much of the load of his weakened immune system for him that I can. Not to mention providing vitamins and minerals for him that his diet lacks.
-That my pregnancy was such that I was forced to let go of my ideas for a natural birth and choose to be induced at 39 weeks. Had I carried Alex all the way to 40 weeks, and delivered on my due date, I would have gone straight from one hospital to the next with no home time at all in between. As it was, I had five days to recover before all heck broke loose again.
-That my mom came up to help me when she did, her fresh eyes seeing Daniel's pale, yellow skin when we couldn't because he had changed so slowly in front of our eyes. And that his ortho appointment was timed so closely after her arrival, so we could deal with it right away without waiting for an appointment with his pediatrician. Since he was a new patient and not immediately ill, just "pale, yellow and had bruises not healing" the receptionist did not see the need to fit us in until May 15. And I would not have taken him to the ER without a doctor's recommendation to do so.
-That the ortho was so willing to order bloodwork, and then followed up closely, ordered a rush on it, and the results were in within hours, not days, which meant that we were admitted to Children's and receiving treatment approximately 12 hours after we first walked into his office.
-That little Alex is an easy baby. So far he is as unflappable as his big brother. He can eat, sleep and poop his pants no matter what is going on around him, and he is a noisy but happy baby. Unless his tummy is empty. Then he is a noisy and extremely unhappy baby. Which happens often. And by often, I mean mere minutes are allowed to elapse between feedings sometimes. He is growing out of jammies it took Daniel three months to grow into.
-That if this had to happen, it is happening now, when we have a low maintenance, newborn instead of a crawling, slobbering baby sliding around and licking the floor, IV poles, etc.
Im sure there are many more things to be grateful for- so many things have gone right that would not have had to, and so many things have not gone wrong that so easily could have.
-That we are "only" dealing with a highly curable cancer.
-That a series of failed jobs brought us to the front range so that when our boy was diagnosed with something that only 2,700ish children in the US get every year, we were close to a top-rated children's hospital. If this had happened in Kansas, everything would have moved much more slowly. It's just one of the things that happens in rural areas.
-That I was stubborn through my pregnancy about not weaning Daniel, feeling bad about having gotten pregnant again before the now-recommended at least two years of breastfeeding were up. I forced myself to nurse him through major nursing aversions as my hormones went crazy, my milk dried up, my nipples felt like they were on fire, and my skin crawled, with the only reward being the sheer nirvana on his face as he snuggled into my breast and instantly relaxed. As soon as Alex was born and my milk began to come back in, Daniel discovered he could not only comfort nurse but actually get milk again, and he and I shared quiet moments together in the hospital, as well as at home for the few days we were there between hospital stays that helped him adjust to the new baby and realize he would do just fine sharing his mama with his new baby brother. And now, we are in another hospital, one where the staff is very supportive of toddler breastfeeding, and Daniel has this one thing he knows will bring him instant comfort whenever he is sad, scared or uncomfortable, that he can ask for whenever he needs. It is a way for him to feel loved and secure, or just needs to have his mama all to himself. And I know that I am personally making antibodies for him that he can no longer make for himself. I am literally carrying as much of the load of his weakened immune system for him that I can. Not to mention providing vitamins and minerals for him that his diet lacks.
-That my pregnancy was such that I was forced to let go of my ideas for a natural birth and choose to be induced at 39 weeks. Had I carried Alex all the way to 40 weeks, and delivered on my due date, I would have gone straight from one hospital to the next with no home time at all in between. As it was, I had five days to recover before all heck broke loose again.
-That my mom came up to help me when she did, her fresh eyes seeing Daniel's pale, yellow skin when we couldn't because he had changed so slowly in front of our eyes. And that his ortho appointment was timed so closely after her arrival, so we could deal with it right away without waiting for an appointment with his pediatrician. Since he was a new patient and not immediately ill, just "pale, yellow and had bruises not healing" the receptionist did not see the need to fit us in until May 15. And I would not have taken him to the ER without a doctor's recommendation to do so.
-That the ortho was so willing to order bloodwork, and then followed up closely, ordered a rush on it, and the results were in within hours, not days, which meant that we were admitted to Children's and receiving treatment approximately 12 hours after we first walked into his office.
-That little Alex is an easy baby. So far he is as unflappable as his big brother. He can eat, sleep and poop his pants no matter what is going on around him, and he is a noisy but happy baby. Unless his tummy is empty. Then he is a noisy and extremely unhappy baby. Which happens often. And by often, I mean mere minutes are allowed to elapse between feedings sometimes. He is growing out of jammies it took Daniel three months to grow into.
-That if this had to happen, it is happening now, when we have a low maintenance, newborn instead of a crawling, slobbering baby sliding around and licking the floor, IV poles, etc.
Im sure there are many more things to be grateful for- so many things have gone right that would not have had to, and so many things have not gone wrong that so easily could have.
Physical therapy, auntie therapy, chemotherapy
Today was a bit of a bummer- Daniel did not feel well most of the day. He threw up again this morning about 40 minutes after he had taken his meds, although the color indicated he had kept most of them down, so they decided he didn't have to retake them. Which is a huge relief, as bad as his dexamethasone (steroid) tastes, any time we don't have to take it twice is a really good thing. Mary spent most of the day caring for Alex while I spent time with Daniel and Bobby went to work for the first time since this all broke loose, since no procedures were scheduled. The physical therapist came by to assess his not-walking issue, and worked with (infuriated) him a bit. Her theory is that aside from the pain in his bones from the cancer, he has some sensory processing issues with his feet making him unwilling to put weight on the balls of his feet or his midfoot, just the heels or the tops of his toes. So she worked with me, showing me how to try to desensitize the bottoms of his feet so he might be willing to have them touch the floor again, and with Daniel, encouraging him to do things by himself. Then it was across the hall to an oncology class, basically what to expect with treatment and protocals for when we take him home. Our next several years will be ones of intense frequent hand washing and Purell by every door, screening anyone we come in contact with for their entire medical history (ok, just that they aren't sick and have not been around anyone who is sick, especially with the vaccine preventable diseases like chicken pox that can go systemic, throughout the entire body and affect organs, deadly for a child with no immune system), dietary and food safety stuff, like requesting that they open a fresh bag of buns at a fast food restaurant to minimize the chances of bacteria, no buffets, no food that has sat out for any amount of time. We also went over dozens of protocals of when to call in, when to race to the emergency room, how to present our child's condition when we got there so we didn't get thrown into a waiting room full of contagious people. And we have to keep our pet clean and vaccinated. And a bath every day. All these things so contrary to our lifestyle of easy, breezy, germ-friendly confidence that bacteria won't cause any real harm, and just adds to our immunity in the long run. Which it does. Until someone in your household has no immunity and no ability to build it. Then germs threaten his life, and we have to take them seriously. The magnitude by which our life is about to change overwhelms me a bit. I know we can do it, but it is a new normal. One that will take a bit of adjustment.
Speaking of which, I find myself feeling incredibly sentimental over the bubba-who-was, and the last few reminders of him. I lie beside him as he sleeps, staring at and memorizing the way his long, silky lashes lie over his porcelain cheeks, the way his eyebrows slope tragically down his forehead, and I mess his hair obsessively, feeling the way his blonde curls slide between my fingers. In two to four weeks, these reminders of my healthy boy will be gone. Six bald months is a short time in the scheme of things, but it only took about six weeks to almost forget that there was ever a time he could walk, even run, jump, and climb, so I know that all too soon, I will hardly be able to comprehend that once, my child looked normal, with sandy little boy curls and the longest, blackest lashes rimming his beautiful blue eyes.
The latest word is that perhaps we will be allowed to go home tomorrow, if he tolerates his first dose of pegaspergase, another chemo drug, in the morning. His neutrophils are at rock bottom, which they should be at this point in his treatment, and his immunity is nonexistant, but there is nothing in particular we need to be here for except for ongoing chemo, which can be done in the clinic as an outpatient. We can monitor him at home and bring him back to be admitted again if he develops a fever or a bacterial infection, which it sounds like almost certainly will happen at least a few times. It is terrifying to me that I am taking home a boy who has very low platelets, so he could lose his ability for his blood to clot, low red blood cells, and extremely low white blood cells, but as the chemo does it's job and his bone marrow begins to function as it should, these issues should slowly resolve.
And our gratitude continues, because chemo is predicted to be all we need. Other kids in this unit have had and are having ongoing chemo, radiation, none marrow transplants, and cannot be seen by anyone not gowned, masked, gloved, and hair netted. They are hostages in isolation. This is not us. We are the lucky ones here. Again, we marvel at the irony of our new definition of things like good luck, good news, good days.
Speaking of which, I find myself feeling incredibly sentimental over the bubba-who-was, and the last few reminders of him. I lie beside him as he sleeps, staring at and memorizing the way his long, silky lashes lie over his porcelain cheeks, the way his eyebrows slope tragically down his forehead, and I mess his hair obsessively, feeling the way his blonde curls slide between my fingers. In two to four weeks, these reminders of my healthy boy will be gone. Six bald months is a short time in the scheme of things, but it only took about six weeks to almost forget that there was ever a time he could walk, even run, jump, and climb, so I know that all too soon, I will hardly be able to comprehend that once, my child looked normal, with sandy little boy curls and the longest, blackest lashes rimming his beautiful blue eyes.
The latest word is that perhaps we will be allowed to go home tomorrow, if he tolerates his first dose of pegaspergase, another chemo drug, in the morning. His neutrophils are at rock bottom, which they should be at this point in his treatment, and his immunity is nonexistant, but there is nothing in particular we need to be here for except for ongoing chemo, which can be done in the clinic as an outpatient. We can monitor him at home and bring him back to be admitted again if he develops a fever or a bacterial infection, which it sounds like almost certainly will happen at least a few times. It is terrifying to me that I am taking home a boy who has very low platelets, so he could lose his ability for his blood to clot, low red blood cells, and extremely low white blood cells, but as the chemo does it's job and his bone marrow begins to function as it should, these issues should slowly resolve.
And our gratitude continues, because chemo is predicted to be all we need. Other kids in this unit have had and are having ongoing chemo, radiation, none marrow transplants, and cannot be seen by anyone not gowned, masked, gloved, and hair netted. They are hostages in isolation. This is not us. We are the lucky ones here. Again, we marvel at the irony of our new definition of things like good luck, good news, good days.
Sunday, April 26, 2015
Up 'til now
Hello, and welcome to Little Daniel's big adventure! Thanks for stopping by to check on us as we travel through all sorts of scary places, knowing that at the end of our hero's journey, there may not be a princess needing rescued (these days, we know that most princesses don't need rescuing anyway, as long as they have been notified that they are strong and intelligent as well as beautiful). But there is a long, healthy life waiting for him, free of things like IV bags, beds with rails, gowns that tie in the back, and medicine that makes us feel sick.
March 7:
Our hero, the invincible Daniel, kissed his daddy goodbye at his truck, then cried inconsolably as his mama drove away with Daniel in the backseat. On the way home, with big belly full of Daniel's future little brother, I decided to swing by the park to try to cheer him up. The ground was still covered in snow after a spring snowstorm. Only the sand around the merry go round was clear, so we spun for awhile, then Daniel hopped off of the merry-go-round and ran over to the tire swing, not a real tire, but a slippery blue plastic tire-shaped swing. Mama tried unsuccessfully to hop up onto the swing to hold Daniel so he wouldn't fall off, but the effort cost me a big, painful contraction that reminded me I should probably be trying not to go into early labor at 33 weeks, not riding tire swings. So I asked Daniel if he could hold on to the chains very tightly as I swung him. He nodded, and was soon seated on one side of the swing. I didn't push him hard, keeping him close enough to grab should he start to slip...but wasn't fast enough when he suddenly slid forward, either accidentally or on purpose, through the hole. The tire spun around and knocked him on the back of the head on the way down, sending him sprawling forward in the slushy snow, and he cried because he had snow against his tummy and up his sleeves. I picked him up, held him, kissed his head, and then tried to stand him up...and his right leg buckled under him. After several more tries he was crying louder, so back to the car he was carried, where he fell asleep almost immediately before I could even drive the few miles home. He was carried inside and tucked into bed, his mama hoping he felt better when he woke up.
Three hours later, he woke up...and still could not walk. His parents decided to wait until Monday (it was Saturday) to take him to the doctor, if he wasn't walking by then.
March 8
He wasn't walking by the next afternoon, and inconsolable, constantly asking for kisses on his right foot and ankle to cure the owies. After much deliberation, and perusal of their insurance policy, his parents took him to the emergency room, where xrays revealed a fractured right distal tibia.
The next morning, I made an appointment for him at the orthopedist's office in four days. In the meantime, he wore the splint he received in the emergency room.
March 12-
The orthopedist looked at his leg and said he would be walking on it soon, and to come back in two weeks.
March 25-
Still not walking. He seemed content to crawl around the house instead of put weight on his injured leg. The orthopedist threw away his splint, took xrays, and said new bone was filling in the fracture, and he would be walking soon. But in case he still was not totally weight bearing in two weeks, to being him back.
April 13
My pregnancy finally made it to 39 weeks, after a miserable four weeks of painful contractions and high blood pressure, modified bed rest and in spite of it, needing to carry Daniel everywhere we went, even lifting him onto his chair at mealtimes because he had started refusing to do even simple tasks for himself. The last two weeks of my pregnancy were full of long, sleepless nights of intense prodromal (false) labor, hours of contractions 3-5 minutes apart that I sat on the living room floor rocking and breathing through, and I was almost relieved when my midwife recommended induction at 39 weeks. For some reason, my blood pressure came down a bit at the end, so she said I didn't have to keep my induction appointment, but i was so sleep deprived and done with the long nights of contractions, simultaneously dealing with Daniel's injury, sitting up and massaging his foot and leg as he whimpered, that I called it on my idea of having a natural labor and birth and decided to go in for what had now become an elective 39 week induction. Daniel sat on a cot in the delivery room as his little brother was born, my entire "real" labor taking all of an hour and a half from first induced contraction to birth. He looked at newborn little Alex, grinned and pointed, said, "baby!", then promptly fell asleep. We laughed and decided he needed to sleep to process what he had just witnessed. When he came back to the hospital the next morning to see mama and Baby Alex after having slept at home with daddy, I thought he looked pale, he had puffy circles under his eyes, his lips were pale, but decided he just hadn't gotten enough sleep lately.
April 15-19
His behavior got worse after baby Alex came home. Daniel only wanted to sit and watch tv. All day long. He had no interest in his toys, or in going outside, even to the park to swing or ride the merry go round, as he had enjoyed doing before. Mama exhausted her entire bag of tricks trying to interest him in anything except episode after episode of Curious George. He dissolved into tears over everything that was suggested. He started not sleeping at night, crying all night and insisting mama squeeze and massage his feet and legs, especially the one he had broken. Between baby Alex's constant hungry tummy and Daniel's crying all night, I didnt get much sleep, but usually by morning, he had cried himself into such exhaustion that he slept until noon, giving me time to either sleep with him, or actually get things done while the wee monster slept. (As long as Baby Alex's tummy was happy and diaper was dry, sleeping was all he did, too.) So we made an appointment with the orthopedist again, willing to do anything to get Daniel to walk again and be a normal boy, tired of him missing out on his childhood because of a broken leg.
Grandma came out to meet baby Alex a few days before the appointment and stay for a week to help me adjust to being mom to two while Bobby went back to work, and she mentioned Daniel's pale color. I agreed that he looked pale, but he also hadn't been able to play outside due to the cold weather and his broken leg. However, fearing a deficiency, perhaps B12 or iron, I decided to mention it to the ortho and see if he thought this could affect his leg healing, and if he could order blood work, since a call to the pediatrician revealed they could not get him in for another four weeks since he was a new patient and not actually sick.
April 22-
Dr. Williams, the orthopedist, ordered X-rays of his ankle, which showed great healing, and he seemed puzzled as to why Daniel was still unable to use it. I mentioned Daniel's pale color, asking if he could order some bloodwork, and he ordered a blood panel for him and wrote a script for physical therapy, pending his blood results. Grandma Sandi, Daniel, Alex and I left his office and drove home for a late breakfast, where I noticed I had a voicemail from the doctor, saying that he had poked his head into the lab while his blood was spinning and it did not look normal-there were far too few red blood cells for the volume drawn. He recommended taking him to the ER for further evaluation. So we took him to the ER, feeling a little silly for being there "because my child looks pale" with no bloodwork results yet to back us up, but as soon as the staff there received the results of the bloodwork the orthopedist had put a rush on, they began a quietly panicked investigation, drawing the absolute minimum amount of blood needed to recheck his results, hoping for a lab error. When they got the results, they calked for an ambulance to transport him to Childrens hospital in Denver, because his body only contained about 1/4 of the blood it should.
Of course we let ourselves go there, thinking immediately of cancer. I began trying to get ahold of Bobby, who had worked all night the night before, then parked his truck to sleep on some dirt road east of Greeley, being too out of hours to drive home legally. He had called for an update after our appointment, then turned his phone off so he could sleep undisturbed. After a few failed tries, I finally called Dispatch and had them locate his truck's Qualcomm, and then locate the Qualcomms of other drivers until they found someone who was close enough to go knock on his door and wake him up. Which took about an hour until he got the message and called me back, then two hours to drive home. He got to the hospital just as the ambulance arrived to take Daniel to Denver, so he rode down with him while Grandma, Alex and I followed about 20 minutes behind. At Childrens, the ER only allowed two adults in the ER, so grandma found a quiet corner of the cafeteria and waited for hours while we sat and waited for more blood to be drawn and a stab at a diagnosis to be made. We held ourselves together, telling ourselves to not cross any bridges until we got to them. So even when the bridges were there, we still watched ourselves crossing them without really feeling the emotions we had imagined we would feel if we ever had a child diagnosed with cancer. The first doctor we talked to in the ER at Children's was an oncologist, who told us that the most obvious reason for his body not creating blood cells was cancer in his bone marrow. We nodded and felt a few of our expectations of having a perfectly healthy child slip away, replaced by sadness. A few tears threatened to be shed, but we took deep breaths and forced them to dry instead. People were watching. Daniel was watching. M ,If the floodgates opened, they wouldn't shut until long after we would need our wits about us to make all of the decisions we would need to make.
Late that night, we finally were assigned to a room on the 7th floor, the bone marrow transplant/highly immuno-compromised unit. We hoped we were in the wrong place, because after all, our kid was not diagnosed with anything except a suspicion of leukemia. They hooked up a bag of blood to his iv and began monitoring for adverse reactions through a series of transfusions, because his blood levels were so low they feared him crashing, and far too low to even consider doing a bone marrow biopsy and lumbar puncture to check for cancer cells. By that time, we were all pretty much dead on our feet, and before long we had all found our spots- daddy on the couch, grandma in the chair holding Alex, and me on the bed cuddling my suddenly very sick, weak, pale little boy, who was suddenly feeling extremely weak from all of the vials of blood drawn over the course of the day. I considered having a quiet cry, but decided I was too exhausted to even go to the effort.
April 23-
Doctor's rounds confirmed that a few "blasts", abnormal cells, were found in his blood, confirming that he has leukemia, but not enough to identify which type. We crossed our fingers for ALL (acute lymphocytic leukemia), the most curable type, with a cure rate of over 90%.
About 3pm, they came to get us for Daniel's bone marrow biopsy, after having had to push off the surgery all day for continuing blood and platelet transfusions and not letting him eat or drink all day while waiting for surgery.
Children's is awesome about letting parents be present for as much of their children's procedures as possible. We left the baby with grandma, and they let us go down to pre-op, then into the actual OR, suited and hair netted, to be with him as he drifted off. At the last moment, he decided he wanted to nurse, and kept reaching for me, and when his dad sat him on the table instead he dissolved into tears. And then the anesthesia kicked in, and his cries became weaker and weaker until he was silent, still and limp, suddenly no longer only our little boy, but a patient, a victim, a helpless little body...and the nurse gently laid him back, told us to quickly kiss him and showed us out. In a bit of a miscommunication, the nurse left us and our threatening tears in our now-empty pre-op room instead of showing us to the waiting room, and there, finally with nobody observing us, we let the floodgates open and had the cry we'd been delaying for over 24 hours.
No sooner had we composed and mopped ourselves up, then the surgeon found us there and asked what we were still doing in pre-op. We had no idea we were actually not allowed there anymore, so we obediently followed another nurse out to the waiting room, where we stayed until he was brought back out. Thankfully, he woke up slowly and did not remember he had gone to sleep crying. It wasn't a major surgery, but it was the hardest for us because it was the first- something about seeing the lights go out and him go under made it all a bit more real.
By late in the evening, the preliminary results of the biopsy were in, including the type of leukemia. ALL. Thank goodness. We celebrated our good news, and marveled at the irony of how much our standards of good news had changed in the last two days.
April 24-
Nurses and doctors burst into our room at 6 am, bearing bags of blood and the news that Daniel's lumbar puncture to check his spinal fluid for cancer cells, inject a dose of chemo into his spinal fluid (because whether cells are present or not, this is to keep them from hiding there), and install a port in his chest for future IV meds, fluids and chemo infusions was unexpectedly scheduled for 8:30 instead of later in the day, around noon, as expected. His platelets, which needed to be at least at 100 for surgery and had been 7 when he came in (normal levels are 150-500) were only at 48, so they needed to come up significantly, and they were going to try to get them up as much as possible in the meantime. And then just as suddenly, the Echo team coming in to get his baseline echo (to monitor his heart for damage during chemo) made the discovery that it was actually 8:30 at night. Panicked activity in our room ceased immediately, and we settled in for a day of inactivity. Fortunately, after Daniel woke up and got his prerequisite morning grumpies out of the way, he discovered that with all the new blood in his body, he had energy he had forgotten he had once had, for the first time in months. He got to be unhooked for about an hour, so we took him to the playroom full of sterilized toys and let him play, and he crawled around the floor like he hasn't done in weeks, giggling and talking.
As it turned out, that was the brightest day of our stay so far. His dose of chemo in his spinal fluid later that night shut him down. He was miserable, crying, and lethargic the rest of the evening. Grandpa Kevin joined us that evening, so the two of them snuggled until late, when Daniel was asleep enough that grandpa Kevin could ease out from under him and take grandma home to our house in Loveland to sleep. Our nurse had requested a family sleep room in the hospital for us, which I took Alex to, laid him next to me where he could help himself if he wanted to nurse during the night (this is the difference between a 10-day old born at 39 weeks and a 36 weeker! Self sufficient baby, that one!) nursed us both to sleep and pretty much died for five hours. I woke up feeling like a new person, and missing my biggest baby, so. I went back to our hospital room and relieved dad from his cuddle duties, laid next to Daniel and nursed him back to sleep when he awoke, helping him stay asleep through vitals and blood transfusions until about 9 am, the most sleep he had managed since our arrival.
April 25- the doctor showed up early, paperwork in hand to ask if we would be willing to enroll him in a trial testing a few changes in chemo schedule and dosage in the next six months. Aunt Mary, Daniel and Alex's godmama, flew in We decided to enroll him, at least for induction, the first, most intensive six months of his treatment, which involves no changes from standard treatment, just extra samples being saved from all of his procedures for research. As soon as the papers were signed, he got his first dose of steroids, the most bitter, foul tasting stuff, and something he will be taking twice a day for the next six months. And soon after, a massive syringe of Vincristine, his first "real" chemo, injected into his port. And then he proceeded to feel miserable, then sleep for hours, until evening when his steroids must have kicked in enough to bring back his good mood and his giggles back. Ervin and Barb Koehn brought Aunt Marci up to see him just as he was getting happy, they stayed for the evening, and as soon as they left he fell asleep. Aunt Mary was sent to the sleep room, mama got the couch, daddy got the bubba cuddles until 4:30 am when daddy's back started to hurt him from sleeping in one position all night and he switched places with mama. Who got out her magic boobies and nursed Daniel back asleep when he started to stir, enabling him to sleep in again through morning vitals.
April 26-
Today. Today we had nothing planned except ongoing medications, perhaps another transfusion or two, and waiting. His next chemo is Wednesday, after which they will monitor him for adverse reactions before they possibly let us go home for a few days until his next dose, a week from today. Aunt Marci was here until the afternoon, and we left grandpa and grandma with the two babies while Aunt Mary, Marci, Daddy and Mama left for lunch- the first time out of the building in four days for mama, and in two days for Aunt Mary. We all got wet because it was raining, but experiencing weather, even adverse, was wonderful. Tonight we scored the sleep room again, so I am considering going there for a few hours so I can be alert tonight while Daddy sleeps. Alex has been passed around all day, fed numerous bottles of pumped breastmilk by Aunties and grandma, and had his diaper changed by whoever happened to be holding him when he filled it. Daniel is looking a little sickly again. His chemo is kicking in, it seems. Even his steroids aren't keeping him from looking like he feels a little yucky, and he has refused to eat all day. He has nursed, so he has had a little bit of nourishment, but tonight, when daddy sat him up to take his oral meds, he threw it up. And then, once all of his yucky-tasting meds were down, he threw up again. We are pumping zofran (anti nausea) into his port now, hoping he will feel better and keep the meds down when he takes them all again.
March 7:
Our hero, the invincible Daniel, kissed his daddy goodbye at his truck, then cried inconsolably as his mama drove away with Daniel in the backseat. On the way home, with big belly full of Daniel's future little brother, I decided to swing by the park to try to cheer him up. The ground was still covered in snow after a spring snowstorm. Only the sand around the merry go round was clear, so we spun for awhile, then Daniel hopped off of the merry-go-round and ran over to the tire swing, not a real tire, but a slippery blue plastic tire-shaped swing. Mama tried unsuccessfully to hop up onto the swing to hold Daniel so he wouldn't fall off, but the effort cost me a big, painful contraction that reminded me I should probably be trying not to go into early labor at 33 weeks, not riding tire swings. So I asked Daniel if he could hold on to the chains very tightly as I swung him. He nodded, and was soon seated on one side of the swing. I didn't push him hard, keeping him close enough to grab should he start to slip...but wasn't fast enough when he suddenly slid forward, either accidentally or on purpose, through the hole. The tire spun around and knocked him on the back of the head on the way down, sending him sprawling forward in the slushy snow, and he cried because he had snow against his tummy and up his sleeves. I picked him up, held him, kissed his head, and then tried to stand him up...and his right leg buckled under him. After several more tries he was crying louder, so back to the car he was carried, where he fell asleep almost immediately before I could even drive the few miles home. He was carried inside and tucked into bed, his mama hoping he felt better when he woke up.
Three hours later, he woke up...and still could not walk. His parents decided to wait until Monday (it was Saturday) to take him to the doctor, if he wasn't walking by then.
March 8
He wasn't walking by the next afternoon, and inconsolable, constantly asking for kisses on his right foot and ankle to cure the owies. After much deliberation, and perusal of their insurance policy, his parents took him to the emergency room, where xrays revealed a fractured right distal tibia.
The next morning, I made an appointment for him at the orthopedist's office in four days. In the meantime, he wore the splint he received in the emergency room.
March 12-
The orthopedist looked at his leg and said he would be walking on it soon, and to come back in two weeks.
March 25-
Still not walking. He seemed content to crawl around the house instead of put weight on his injured leg. The orthopedist threw away his splint, took xrays, and said new bone was filling in the fracture, and he would be walking soon. But in case he still was not totally weight bearing in two weeks, to being him back.
April 13
My pregnancy finally made it to 39 weeks, after a miserable four weeks of painful contractions and high blood pressure, modified bed rest and in spite of it, needing to carry Daniel everywhere we went, even lifting him onto his chair at mealtimes because he had started refusing to do even simple tasks for himself. The last two weeks of my pregnancy were full of long, sleepless nights of intense prodromal (false) labor, hours of contractions 3-5 minutes apart that I sat on the living room floor rocking and breathing through, and I was almost relieved when my midwife recommended induction at 39 weeks. For some reason, my blood pressure came down a bit at the end, so she said I didn't have to keep my induction appointment, but i was so sleep deprived and done with the long nights of contractions, simultaneously dealing with Daniel's injury, sitting up and massaging his foot and leg as he whimpered, that I called it on my idea of having a natural labor and birth and decided to go in for what had now become an elective 39 week induction. Daniel sat on a cot in the delivery room as his little brother was born, my entire "real" labor taking all of an hour and a half from first induced contraction to birth. He looked at newborn little Alex, grinned and pointed, said, "baby!", then promptly fell asleep. We laughed and decided he needed to sleep to process what he had just witnessed. When he came back to the hospital the next morning to see mama and Baby Alex after having slept at home with daddy, I thought he looked pale, he had puffy circles under his eyes, his lips were pale, but decided he just hadn't gotten enough sleep lately.
April 15-19
His behavior got worse after baby Alex came home. Daniel only wanted to sit and watch tv. All day long. He had no interest in his toys, or in going outside, even to the park to swing or ride the merry go round, as he had enjoyed doing before. Mama exhausted her entire bag of tricks trying to interest him in anything except episode after episode of Curious George. He dissolved into tears over everything that was suggested. He started not sleeping at night, crying all night and insisting mama squeeze and massage his feet and legs, especially the one he had broken. Between baby Alex's constant hungry tummy and Daniel's crying all night, I didnt get much sleep, but usually by morning, he had cried himself into such exhaustion that he slept until noon, giving me time to either sleep with him, or actually get things done while the wee monster slept. (As long as Baby Alex's tummy was happy and diaper was dry, sleeping was all he did, too.) So we made an appointment with the orthopedist again, willing to do anything to get Daniel to walk again and be a normal boy, tired of him missing out on his childhood because of a broken leg.
Grandma came out to meet baby Alex a few days before the appointment and stay for a week to help me adjust to being mom to two while Bobby went back to work, and she mentioned Daniel's pale color. I agreed that he looked pale, but he also hadn't been able to play outside due to the cold weather and his broken leg. However, fearing a deficiency, perhaps B12 or iron, I decided to mention it to the ortho and see if he thought this could affect his leg healing, and if he could order blood work, since a call to the pediatrician revealed they could not get him in for another four weeks since he was a new patient and not actually sick.
April 22-
Dr. Williams, the orthopedist, ordered X-rays of his ankle, which showed great healing, and he seemed puzzled as to why Daniel was still unable to use it. I mentioned Daniel's pale color, asking if he could order some bloodwork, and he ordered a blood panel for him and wrote a script for physical therapy, pending his blood results. Grandma Sandi, Daniel, Alex and I left his office and drove home for a late breakfast, where I noticed I had a voicemail from the doctor, saying that he had poked his head into the lab while his blood was spinning and it did not look normal-there were far too few red blood cells for the volume drawn. He recommended taking him to the ER for further evaluation. So we took him to the ER, feeling a little silly for being there "because my child looks pale" with no bloodwork results yet to back us up, but as soon as the staff there received the results of the bloodwork the orthopedist had put a rush on, they began a quietly panicked investigation, drawing the absolute minimum amount of blood needed to recheck his results, hoping for a lab error. When they got the results, they calked for an ambulance to transport him to Childrens hospital in Denver, because his body only contained about 1/4 of the blood it should.
Of course we let ourselves go there, thinking immediately of cancer. I began trying to get ahold of Bobby, who had worked all night the night before, then parked his truck to sleep on some dirt road east of Greeley, being too out of hours to drive home legally. He had called for an update after our appointment, then turned his phone off so he could sleep undisturbed. After a few failed tries, I finally called Dispatch and had them locate his truck's Qualcomm, and then locate the Qualcomms of other drivers until they found someone who was close enough to go knock on his door and wake him up. Which took about an hour until he got the message and called me back, then two hours to drive home. He got to the hospital just as the ambulance arrived to take Daniel to Denver, so he rode down with him while Grandma, Alex and I followed about 20 minutes behind. At Childrens, the ER only allowed two adults in the ER, so grandma found a quiet corner of the cafeteria and waited for hours while we sat and waited for more blood to be drawn and a stab at a diagnosis to be made. We held ourselves together, telling ourselves to not cross any bridges until we got to them. So even when the bridges were there, we still watched ourselves crossing them without really feeling the emotions we had imagined we would feel if we ever had a child diagnosed with cancer. The first doctor we talked to in the ER at Children's was an oncologist, who told us that the most obvious reason for his body not creating blood cells was cancer in his bone marrow. We nodded and felt a few of our expectations of having a perfectly healthy child slip away, replaced by sadness. A few tears threatened to be shed, but we took deep breaths and forced them to dry instead. People were watching. Daniel was watching. M ,If the floodgates opened, they wouldn't shut until long after we would need our wits about us to make all of the decisions we would need to make.
Late that night, we finally were assigned to a room on the 7th floor, the bone marrow transplant/highly immuno-compromised unit. We hoped we were in the wrong place, because after all, our kid was not diagnosed with anything except a suspicion of leukemia. They hooked up a bag of blood to his iv and began monitoring for adverse reactions through a series of transfusions, because his blood levels were so low they feared him crashing, and far too low to even consider doing a bone marrow biopsy and lumbar puncture to check for cancer cells. By that time, we were all pretty much dead on our feet, and before long we had all found our spots- daddy on the couch, grandma in the chair holding Alex, and me on the bed cuddling my suddenly very sick, weak, pale little boy, who was suddenly feeling extremely weak from all of the vials of blood drawn over the course of the day. I considered having a quiet cry, but decided I was too exhausted to even go to the effort.
April 23-
Doctor's rounds confirmed that a few "blasts", abnormal cells, were found in his blood, confirming that he has leukemia, but not enough to identify which type. We crossed our fingers for ALL (acute lymphocytic leukemia), the most curable type, with a cure rate of over 90%.
About 3pm, they came to get us for Daniel's bone marrow biopsy, after having had to push off the surgery all day for continuing blood and platelet transfusions and not letting him eat or drink all day while waiting for surgery.
Children's is awesome about letting parents be present for as much of their children's procedures as possible. We left the baby with grandma, and they let us go down to pre-op, then into the actual OR, suited and hair netted, to be with him as he drifted off. At the last moment, he decided he wanted to nurse, and kept reaching for me, and when his dad sat him on the table instead he dissolved into tears. And then the anesthesia kicked in, and his cries became weaker and weaker until he was silent, still and limp, suddenly no longer only our little boy, but a patient, a victim, a helpless little body...and the nurse gently laid him back, told us to quickly kiss him and showed us out. In a bit of a miscommunication, the nurse left us and our threatening tears in our now-empty pre-op room instead of showing us to the waiting room, and there, finally with nobody observing us, we let the floodgates open and had the cry we'd been delaying for over 24 hours.
No sooner had we composed and mopped ourselves up, then the surgeon found us there and asked what we were still doing in pre-op. We had no idea we were actually not allowed there anymore, so we obediently followed another nurse out to the waiting room, where we stayed until he was brought back out. Thankfully, he woke up slowly and did not remember he had gone to sleep crying. It wasn't a major surgery, but it was the hardest for us because it was the first- something about seeing the lights go out and him go under made it all a bit more real.
By late in the evening, the preliminary results of the biopsy were in, including the type of leukemia. ALL. Thank goodness. We celebrated our good news, and marveled at the irony of how much our standards of good news had changed in the last two days.
April 24-
Nurses and doctors burst into our room at 6 am, bearing bags of blood and the news that Daniel's lumbar puncture to check his spinal fluid for cancer cells, inject a dose of chemo into his spinal fluid (because whether cells are present or not, this is to keep them from hiding there), and install a port in his chest for future IV meds, fluids and chemo infusions was unexpectedly scheduled for 8:30 instead of later in the day, around noon, as expected. His platelets, which needed to be at least at 100 for surgery and had been 7 when he came in (normal levels are 150-500) were only at 48, so they needed to come up significantly, and they were going to try to get them up as much as possible in the meantime. And then just as suddenly, the Echo team coming in to get his baseline echo (to monitor his heart for damage during chemo) made the discovery that it was actually 8:30 at night. Panicked activity in our room ceased immediately, and we settled in for a day of inactivity. Fortunately, after Daniel woke up and got his prerequisite morning grumpies out of the way, he discovered that with all the new blood in his body, he had energy he had forgotten he had once had, for the first time in months. He got to be unhooked for about an hour, so we took him to the playroom full of sterilized toys and let him play, and he crawled around the floor like he hasn't done in weeks, giggling and talking.
As it turned out, that was the brightest day of our stay so far. His dose of chemo in his spinal fluid later that night shut him down. He was miserable, crying, and lethargic the rest of the evening. Grandpa Kevin joined us that evening, so the two of them snuggled until late, when Daniel was asleep enough that grandpa Kevin could ease out from under him and take grandma home to our house in Loveland to sleep. Our nurse had requested a family sleep room in the hospital for us, which I took Alex to, laid him next to me where he could help himself if he wanted to nurse during the night (this is the difference between a 10-day old born at 39 weeks and a 36 weeker! Self sufficient baby, that one!) nursed us both to sleep and pretty much died for five hours. I woke up feeling like a new person, and missing my biggest baby, so. I went back to our hospital room and relieved dad from his cuddle duties, laid next to Daniel and nursed him back to sleep when he awoke, helping him stay asleep through vitals and blood transfusions until about 9 am, the most sleep he had managed since our arrival.
April 25- the doctor showed up early, paperwork in hand to ask if we would be willing to enroll him in a trial testing a few changes in chemo schedule and dosage in the next six months. Aunt Mary, Daniel and Alex's godmama, flew in We decided to enroll him, at least for induction, the first, most intensive six months of his treatment, which involves no changes from standard treatment, just extra samples being saved from all of his procedures for research. As soon as the papers were signed, he got his first dose of steroids, the most bitter, foul tasting stuff, and something he will be taking twice a day for the next six months. And soon after, a massive syringe of Vincristine, his first "real" chemo, injected into his port. And then he proceeded to feel miserable, then sleep for hours, until evening when his steroids must have kicked in enough to bring back his good mood and his giggles back. Ervin and Barb Koehn brought Aunt Marci up to see him just as he was getting happy, they stayed for the evening, and as soon as they left he fell asleep. Aunt Mary was sent to the sleep room, mama got the couch, daddy got the bubba cuddles until 4:30 am when daddy's back started to hurt him from sleeping in one position all night and he switched places with mama. Who got out her magic boobies and nursed Daniel back asleep when he started to stir, enabling him to sleep in again through morning vitals.
April 26-
Today. Today we had nothing planned except ongoing medications, perhaps another transfusion or two, and waiting. His next chemo is Wednesday, after which they will monitor him for adverse reactions before they possibly let us go home for a few days until his next dose, a week from today. Aunt Marci was here until the afternoon, and we left grandpa and grandma with the two babies while Aunt Mary, Marci, Daddy and Mama left for lunch- the first time out of the building in four days for mama, and in two days for Aunt Mary. We all got wet because it was raining, but experiencing weather, even adverse, was wonderful. Tonight we scored the sleep room again, so I am considering going there for a few hours so I can be alert tonight while Daddy sleeps. Alex has been passed around all day, fed numerous bottles of pumped breastmilk by Aunties and grandma, and had his diaper changed by whoever happened to be holding him when he filled it. Daniel is looking a little sickly again. His chemo is kicking in, it seems. Even his steroids aren't keeping him from looking like he feels a little yucky, and he has refused to eat all day. He has nursed, so he has had a little bit of nourishment, but tonight, when daddy sat him up to take his oral meds, he threw it up. And then, once all of his yucky-tasting meds were down, he threw up again. We are pumping zofran (anti nausea) into his port now, hoping he will feel better and keep the meds down when he takes them all again.
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