Hi from the mixed bag that is Children's! Yes, here we are again. Although last time I thought we were in 7 west, this time we actually are. Last time we were apparently in 7 East, the HI-BMT (highly immunocompromised- bone marrow transplant) Unit. 7 West is a much more relaxed environment, even though gowns are required for anyone entering our room who will later enter any other room, and for any time we leave the room. But no mandatory 30 second handwashing session followed by slathering of Avaguard before being approved and rung in, no bleaching of all wheeled equipment like wagons and IV poles, no food restrictions as far as what can even come on the floor (as in, no berries because they can harbor fungus). But still, we are stuck in our room because of the pooping situation and not wanting to spread anything around, should it be spread-around-able.
I say mixed bag, because after four days at home, I was almost wishing for the orderly schedules of our week in our room on 7E. The room was thoroughly cleaned and wiped down twice a day, meals were only a phone call away for Daniel, a walk down to the cafeteria for us, and napping was highly encouraged. Plus with two adults, one adult could actually nap without fear of leaving two babies unattended. I made the discovery during my hospital stay after giving birth to Alex that a hospital can be a legitimate vacation. After B and D went home for nights, my only responsibility was bonding and caring for Alex. No laundry, cooking, cleaning...all was done for me. And now home also involves the terrifying responsibility of monitoring Daniel's physical signs for any abnormality, and the consequence of missing one is too overwhelming to even think about. Home is just where our stuff is, so a bit more convenient.
Home might actually be more homey if it weren't merely the rental of this particular year. I think back to all the places we have resided, and only the home we owned, the trailer house in Summit Cove, makes me get all nostalgic. And the farm felt like home, but in a different way. It felt like where our roots were, but it also, even with all of our improvements and updates, felt like my grandparent's home first, our home second. This house is not home. Our pictures and knick-knacks aren't out, the stains and burns in the carpets aren't ours, the smell when we walk in after a long period away isn't ours. I have been wondering lately what it might take to make a place home. Perhaps I don't know because we have never lived under one roof long enough to find out. And perhaps it is just sheer time. Or ownership. But that doesn't seem right. That seems like a first world problem.
I digress. My point is, whether a hospital room or a house, hotel or camper, home is where your family is, and in the hospital, the panic of caring for a sick little boy is taken care of for me. But eventually we are going to our house for longer and longer times. And at this point, I have spent very little time as sole caregiver to these two little boys. I don't even know if I can do it. Last night was a big test run for me, alone with them while B went home to sleep, then to work at 6am. So it isn't the strong pull of home that has me wanting to go there. Just mostly the access to outside, the ability to create my own meals, the convenience of having places to lay (or lose) the baby.
Goodness. Too many distractions while I write. I can't concentrate well enough to realize that I havent even told the story of our last few days. Just discovered that with a quick scroll up.
So our relief that Daniel was all cleaned out turned to concern as he kept overflowing his diapers. We stopped his laxative, since obviously chemo wasn't going to make him constipated, and still he kept going, and going, and going. The soiled laundry was becoming a problem. They don't make diapers to contain that mess. Then finally on Sunday night, he started passing giant globs of mucus, some of which were streaked with blood. Given the likelyhood and problematic nature of a bleed anywhere in his GI tract, we immediately called in to the hospital and talked to the on-call oncologist. She suggested that we take him into the local ER to run a few tests, but sounded like it wasnt super critical yet if he wasnt in a lot of pain. Which he had been rolling around crying, his hands clenched, but as soon as he had had his last explosion he had fallen asleep, so I asked if we could just monitor the pain overnight ourselves. She said we could, but then called right back to say she had had a look at his labs, and given his low, low platelets, she would much more strongly suggest the local ER. Could we just come down to Childrens ER instead? We asked. She didnt think we should do anything so rash just yet, our local ER could handle a C.Difficile culture (a bacteria that can overgrow with use of antibiotics and lead to major, unstoppable diarrhea), an abdominal scan, and some bloodwork. So, even though it was a new hospital to us, we drove over to Medical Center of the Rockies, who works more with Children's than our smaller hospital a few miles from the house. And spent four hours there while they ran labs and ordered a CT scan. They accessed the port on his chest for blood draws and fluids while I nursed him to keep him calm, something the ER nurse said was a new experience for him. After having given birth and coming home to two little boys, then spending almost my entire post-partum time so far in hospitals tandem feeding two ravenous boys, I have no dignity or personal space left. If my ta-tas can keep Daniel calm for procedures and vitals, I will not hesitate to get them out. I just wish they could manage to be a little less...beefy. Ridonculous. You know, if I'm going to use them as weapons against meltdowns and such. But apparently you don't make ridonculous amounts of milk without the milk makers growing out of their old facility.
When Daniel's bloodwork came back, the ER doc seemed a bit freaked out over his low numbers, his white cells, at 0.28 (normal range is 5.7-10.5) were too low to even do an ANC in their lab (absolute neutrophile count, the yardstick by which his immunity is measured, normal levels 180-540). Which, it turns out are 38, less than half of the low number of 80 they were on Friday. Nobody there felt comfortable dealing with such low numbers, so they were transferring us to Children's. They let us transfer him ourselves, since our vehicle was more of a sterile environment for him than the ambulance.
We got the Children's at 2 am, and sat in our ER room until 6, as they monitored him. Finally they determined him stable enough to assign to a room upstairs (they explained that they like to keep these kids in the ER for a while after they come in, since if they crash, they crash fast and more resources and equipment are available in the ER than in the patient rooms).
After we got to our room, we all fell asleep for about an hour. Even Daniel, who had been crying since he was cut off from breastfeeding at 2 am. Then Alex awoke, shift change, rounds...and Daniel awoke wanting food. And desperately sad and wanting to nurse. And then the meltdowns started in earnest. Hell hath no fury like a 'roided up two year old on a food binge, with a painfully distended belly that strangers keep wanting to push on, and an inflamed large intestine, denied food and his most efficient source of comfort. Hoo boy, the bawling, wailing, screaming that commenced, abated whenever he saw me just long enough for him to sign that he wanted to nurse, then resumed with a fury as soon as he realized I wasn't going to let him. Mom was being a certified jerk, and as such, she was not allowed to provide any sort of comfort if she was going to hold out on him with the boobs. Neither was his dad, because dad had no boobs. As long as I stayed out of sight, especially while nursing Alex, things went a little bit better. And by better, I mean that the wailing and hoarse screaming turned into a slightly lower pitched bawling and angry yelling. For fif. teen. long. hours. Oh, my nerves. I love the living stuff out of that boy, and I would do anything for him. I believe I have sufficiently proven this statement true by the fact that I did not lose my own composure even once. Even after having been up for 36 hours, minus a one-hour nap, the last fifteen of which sounded like an exorcism was taking place in our room, I stayed calm, encouraging, and provided as much soothing as I could, apart from my bouncing, delicious milky jugs. (This is how they are viewed by the two year old and three week old, more than by their daddy these days.) And then, the second he was approved for a regular diet, before the doctor was even out of the room, I ripped open my shirt and let him have full use of the elixir to cure all ills, the life-giving nectar, the boobs of all comfort. And instant, blessed silence.
Honestly, breast nomenclatures aside, I am struggling with this problem. I obviously did not see this coming when I chose not to wean him through my pregnancy. It was such an efficient form of comfort, supported by research and millennia of mamas nursing through toddlerhood, and it fit so well with our parenting style and lifestyle. It felt so natural, at least until the hormones created big aversions, but then it became personal and I gritted my teeth and pushed through, determined not to let my hormones win. And with his diagnosis came such relief that I had stuck it out, so I could continue to provide him with easily digestible nutrition and instant comfort through the worst of his cancer treatment, a comfort so potent that it could stop him mid-scream and put him into a calm, complacent, joyous place. It has literally been our biggest ally in this fight (although everyone else's help has been amazing, and I can't thank you enough, I am sorry it's all been trumped by one set of lactating mammaries, as far as Daniel is concerned), keeping him from even noticing some of the most upsetting situations. As soon as he latches on, I can feel his whole body relax, his clenched muscles melt, which I suspect even causes the pain, or his perception of it, to subside. When he is curled and clenched up, his fists curled into tight balls, his head smashed against his left shoulder, his knees drawn up to his chest, fifteen minutes of nursing makes him relax and sometimes even fall asleep, sparing us the need for yet more drugs. Until. (Waa-waaaw-waaaaawwww) he has to be NPO. When he isn't allowed any food by mouth, this includes breast milk. And then it becomes our kryptonite. It takes us down. Hard. There is nothing like asking for the one single thing you know will make your whole world better when you are stressed to the point of breaking by your constant hunger and raging emotions, and the person you have always trusted to meet your every need just sits there, in possession of said comfort, and refuses to give it to you. The magnitude of this betrayal is staggering. It is world-ending when your world is that of a two year old thrown into strange and terrifying circumstances.
Sometimes my husband reminds me that people just want the facts. They don't need to know how said facts made us all feel. Silly man. Of course everyone wants to know how one pair of melons (well, grapefruits) ruined everyone's day and were responsible for the river of tears we paddled upstream against all day.
So back to the facts. We were introduced to the scary prospect of Typhlitis. AKA neutropenic enterocolitis, a potential complication of leukemia and treatment thereof, with only about a 50% fatality rate. I can't imagine where their concern was coming from. Apparently a big concern is also a perforated bowel, and with his white cells and neutrophils so very low, an infection leading to this is a real concern and not to be taken lightly. His CT scan, when read by radiologists here at children's, showed no ulcerations, just thickening of the bowel walls indicating inflamed portions, which was a huge relief. As was the absence of C. Difficile, the nasty bacteria that can overgrow when antibiotics have wiped out beneficial bacteria and chemo and cancer have wiped out one's resistance to bacterial infection.
So here we are, pushing antibiotics, fluids and blood transfusions, hoping his numbers come up and he proves himself able to not shoot future meals out the leg holes in his diapers. Until those two things happen we aren't going anywhere. No clue what caused the projectile poop in the first place, most likely just another effect of one or more of his drugs.
But I have crossed a milestone of my own with this stay- my first solo night in the hospital. I know it's weird, but I am telling people I don't need any help this time. The help I've received has been amazing, not to mention it's been good girltime, but ever since his official diagnosis on April 23, I've known that eventually, I am going to become the primary caregiver to these precious little boys. We are going to spend whole days and nights together with no real back up, nobody to take the baby when Daniel cries, nobody to help me assess Daniel's health and decide it it's something to call in about or not. Someday I'm going to find myself being the chauffeur, chef, nanny, home-health worker, laundry service and housekeeper while my husband goes out and earns enough to afford my services. (Just kidding.) And. I have had no idea if I'm fooling myself that I can even do it. I had a few solo days at home and although I felt like I had a few big fails, especially in the housekeeping and dietary department, everybody stayed alive, so that was a win. But could I stay the night in the hospital with two babies, manage to actually sleep while keeping them simultaneously happy and asleep, and maintain my sanity? Turns out I can, and did. I feel pretty good about this. Daddy, meanwhile, got home about 11pm and slept a precious six hours before going to work. It was hard for him to leave us here, but I practically kicked him out the door. As mentioned before, his leaving the roadway in a moving semi truck due to lack of sleep, or crossing the center line into oncoming traffic is so not something I am in the mood to deal with right now. I would much prefer he get his sleep than have to deal with the possible consequences of him not sleeping.
Tuesday, May 5, 2015
Saturday, May 2, 2015
Handling it. Sort of.
It was a good day today, if a bit of an indication of what is to come in our next three weeks. The worst effects of Daniel's "whammy" chemo on Wednesday finally wore off, and he felt less nauseated this morning. This left the effects of the steroids undampened. At first, we were thrilled that he was eating a few bites of eggs at breakfast...but our excitement turned to a bit of concern as he kept eating...and kept eating...and kept eating. Soon we were afraid he would throw up, since his stomach has shrunk so much in the last two weeks of only occasional nibbles of food. We finally took away his food, which led to a meltdown. And this has been the story of our day. The volatile mood swings are starting.
We went over to the Seven Lakes neighborhood and took a long walk along the bike path into Boyd Lake State Park, marveling the whole time how how normal we felt, it sort of just felt like we were on vacation. It only took a day off work, a four mile drive and a little walk along the shoreline to put us into relaxed vacation mode. We extended our vacation with outdoor burgers. But then it was back home to clean the house, and vacation was over. We have one more day before the next well is up and Bobby has to go back to work, so maybe another two-hour vacation/walk can happen tomorrow. The sanity was helped greatly by today's. It ended with another meltdown over not being able to stop eating dinner, even though the tummy was painfully hard, bloated and gassy from his day of suddenly being obsessed with food. He cried himself to sleep, curled into my body so tightly it seemed he was trying to somehow melt himself back into my womb, while simultaneously clawing at my face and trying to push it away.
The bright spot of the evening was, ironically, giving him his meds. He bravely swallowed his foul-tasting dexamethasone, then cheered and clapped for himself.
After he had finally cried himself to sleep, I took Alex from Bobby, who was holding him on his chest and dozing, and nursed him into a state of calm, then climbed my sweaty, sticky self out of bed to brush my teeth and take a shower. As I was showering, I realized I couldn't actually remember the last time I had done so. I consulted the stubble on my legs and decided that judging by that, it must have been about three days ago. Then I turned off the water, only to hear Alex start to wail, so here I sit in my underwear in the living room, rocking and nursing him. The child is a bottomless pit. He is filling out, turning into a chunky little monkey, with wide, surprised blue eyes taking in as much of the world as they can before they cross. Already, the differences in personality between him and his big brother are becoming obvious. Alex has less of his dad's pragmatic stoicism and more of his mom's intolerance of BS. He calls it daily on being ignored, or not being constantly fed, or just general discontent over tummy bubbles and other discomforts. Which is necessary. If he didn't do so, I might actually forget he is here in the insanity that big brother is creating in our house these days.
Oh, and this: brushing Daniel's curls after his bath tonight, I am suspicious his hair has started to go. No missing clumps yet, but just an all-over thinness and lifelessness that wasn't there before. I'm in mourning over it, and my sentimental obsession is reaching new heights as I bury my face in it to smell it and feel it tickling my face, memorizing the color and the way it swirls and curls, but in a way, I almost look forward to it being gone from the standpoint that when we are out and about, pushing a stroller full of an overweight, hysterical child who looks like he should be able to walk on his own, maybe his bald head will clue people into the fact that he is not the ill-trained brat he appears to be, but sick.
I have received so many compliments lately on how brave and strong we seem to be in the face of this nightmare. I don't entirely know how to respond to this, so I say thanks. Or I say maybe we just haven't realized yet what is coming. But honestly, I think it's that this is our road taken, and as such, it is easier to be the ones experiencing it than the ones standing helplessly by watching it. If i had to watch someone I love going through this, I would probably feel a whole range of emotions I am spared from by being in the middle of it- guilt over not being able to help, imagination going wild over how hard it must be, guilt over forgetting about it sometimes and just going on with my life, knowing that they had no option to forget or be normal. All things that I don't need to feel. And lest anyone think we are actually keeping it entirely together, here are a few honest confessions that might change your mind and convince you that we are normal after all:
Several times today, i have gone back to where I left the newborn...only to not find him there. Then I have to think back to where I actually left him the last time I had to lay him down to deal with one of Daniel's problems.
I went to the park on Thursday to an outdoor play group, and at one point left both babies with the other moms to go to the car to get a hat for Daniel, and moved the car to a closer parking spot at the same time. As I was driving, I had the thought that if I was gonna make a break for it and just keep driving, now would be an excellent time. Both kids were in the capable hands of five responsible women.
I carried my cell phone to the car to look for my cell phone.
Both Bobby and I slept in our clothes last night because we didn't have the energy to shower or locate pajamas. And we didn't brush our teeth either, because our toothbrushes were still in the overnight bag in the car.
Bobby went to the store tonight to buy three items: a new toilet seat (because the old one bucks us off sideways when we sit down less than perfectly aligned because a bolt broke), refrigerator magnets (to handle all of our new paperwork and information that needs to hang on the fridge), and Glad Press'n'Seal (to cover Daniel's port with on infusion days after we spread numbing cream on it). He came home with three items: Glad Press'n'Seal, new toothbrushes, and antibacterial wipes.
We felt a little angry about all the healthy kids running around the park today. Then we felt angry that we felt angry, because we don't wish ill on them, and we could have it so much worse.
After all of Daniel's fluids that accompanied his chemo yesterday, his diaper failed overnight. I awoke lying between my little boys, my back soaked in toxic chemo pee, my front soaked in breastmilk. So I pulled off my shirt and threw it on the floor, got up and grabbed a towel, laid it over the puddles, changed Daniel's diaper and Alex's pajamas, and went back to sleep. Life is too short to get four people out of bed just to change the sheets.
Yesterday before leaving home, we had to cover Daniel's port and lower back, site of his lumbar puncture, with numbing cream. I forgot his back. Then we had no Glad Press'N'Seal to cover the cream on his port with, so I borrowed some from a burrito in the freezer.
The smallest baby spent a good part of his afternoon in the swing. I'm probably going to baby-wearing, hippie-mama hell. Especially since neither of them have worn cloth diapers for several weeks now.
And on that note, the tiny one has finally fallen into a milk coma, and the bigger little is making sad noises in the bedroom, probably having awoken to discover his mama wasn't there. Good night to all of our dear ones out there who care enough to check in on us here on the blog!
We went over to the Seven Lakes neighborhood and took a long walk along the bike path into Boyd Lake State Park, marveling the whole time how how normal we felt, it sort of just felt like we were on vacation. It only took a day off work, a four mile drive and a little walk along the shoreline to put us into relaxed vacation mode. We extended our vacation with outdoor burgers. But then it was back home to clean the house, and vacation was over. We have one more day before the next well is up and Bobby has to go back to work, so maybe another two-hour vacation/walk can happen tomorrow. The sanity was helped greatly by today's. It ended with another meltdown over not being able to stop eating dinner, even though the tummy was painfully hard, bloated and gassy from his day of suddenly being obsessed with food. He cried himself to sleep, curled into my body so tightly it seemed he was trying to somehow melt himself back into my womb, while simultaneously clawing at my face and trying to push it away.
The bright spot of the evening was, ironically, giving him his meds. He bravely swallowed his foul-tasting dexamethasone, then cheered and clapped for himself.
After he had finally cried himself to sleep, I took Alex from Bobby, who was holding him on his chest and dozing, and nursed him into a state of calm, then climbed my sweaty, sticky self out of bed to brush my teeth and take a shower. As I was showering, I realized I couldn't actually remember the last time I had done so. I consulted the stubble on my legs and decided that judging by that, it must have been about three days ago. Then I turned off the water, only to hear Alex start to wail, so here I sit in my underwear in the living room, rocking and nursing him. The child is a bottomless pit. He is filling out, turning into a chunky little monkey, with wide, surprised blue eyes taking in as much of the world as they can before they cross. Already, the differences in personality between him and his big brother are becoming obvious. Alex has less of his dad's pragmatic stoicism and more of his mom's intolerance of BS. He calls it daily on being ignored, or not being constantly fed, or just general discontent over tummy bubbles and other discomforts. Which is necessary. If he didn't do so, I might actually forget he is here in the insanity that big brother is creating in our house these days.
Oh, and this: brushing Daniel's curls after his bath tonight, I am suspicious his hair has started to go. No missing clumps yet, but just an all-over thinness and lifelessness that wasn't there before. I'm in mourning over it, and my sentimental obsession is reaching new heights as I bury my face in it to smell it and feel it tickling my face, memorizing the color and the way it swirls and curls, but in a way, I almost look forward to it being gone from the standpoint that when we are out and about, pushing a stroller full of an overweight, hysterical child who looks like he should be able to walk on his own, maybe his bald head will clue people into the fact that he is not the ill-trained brat he appears to be, but sick.
I have received so many compliments lately on how brave and strong we seem to be in the face of this nightmare. I don't entirely know how to respond to this, so I say thanks. Or I say maybe we just haven't realized yet what is coming. But honestly, I think it's that this is our road taken, and as such, it is easier to be the ones experiencing it than the ones standing helplessly by watching it. If i had to watch someone I love going through this, I would probably feel a whole range of emotions I am spared from by being in the middle of it- guilt over not being able to help, imagination going wild over how hard it must be, guilt over forgetting about it sometimes and just going on with my life, knowing that they had no option to forget or be normal. All things that I don't need to feel. And lest anyone think we are actually keeping it entirely together, here are a few honest confessions that might change your mind and convince you that we are normal after all:
Several times today, i have gone back to where I left the newborn...only to not find him there. Then I have to think back to where I actually left him the last time I had to lay him down to deal with one of Daniel's problems.
I went to the park on Thursday to an outdoor play group, and at one point left both babies with the other moms to go to the car to get a hat for Daniel, and moved the car to a closer parking spot at the same time. As I was driving, I had the thought that if I was gonna make a break for it and just keep driving, now would be an excellent time. Both kids were in the capable hands of five responsible women.
I carried my cell phone to the car to look for my cell phone.
Both Bobby and I slept in our clothes last night because we didn't have the energy to shower or locate pajamas. And we didn't brush our teeth either, because our toothbrushes were still in the overnight bag in the car.
Bobby went to the store tonight to buy three items: a new toilet seat (because the old one bucks us off sideways when we sit down less than perfectly aligned because a bolt broke), refrigerator magnets (to handle all of our new paperwork and information that needs to hang on the fridge), and Glad Press'n'Seal (to cover Daniel's port with on infusion days after we spread numbing cream on it). He came home with three items: Glad Press'n'Seal, new toothbrushes, and antibacterial wipes.
We felt a little angry about all the healthy kids running around the park today. Then we felt angry that we felt angry, because we don't wish ill on them, and we could have it so much worse.
After all of Daniel's fluids that accompanied his chemo yesterday, his diaper failed overnight. I awoke lying between my little boys, my back soaked in toxic chemo pee, my front soaked in breastmilk. So I pulled off my shirt and threw it on the floor, got up and grabbed a towel, laid it over the puddles, changed Daniel's diaper and Alex's pajamas, and went back to sleep. Life is too short to get four people out of bed just to change the sheets.
Yesterday before leaving home, we had to cover Daniel's port and lower back, site of his lumbar puncture, with numbing cream. I forgot his back. Then we had no Glad Press'N'Seal to cover the cream on his port with, so I borrowed some from a burrito in the freezer.
The smallest baby spent a good part of his afternoon in the swing. I'm probably going to baby-wearing, hippie-mama hell. Especially since neither of them have worn cloth diapers for several weeks now.
And on that note, the tiny one has finally fallen into a milk coma, and the bigger little is making sad noises in the bedroom, probably having awoken to discover his mama wasn't there. Good night to all of our dear ones out there who care enough to check in on us here on the blog!
Friday, May 1, 2015
Go Fund Me link
I couldn't get this address to link down at the end of my last post, so here it is again: http://www.gofundme.com/t4mdbck
Clinic newbs
Hello to our dear ones! Life is looking good for various reasons right now. It has been a day of blessings that more than cover the sadness of having to go in for another day of chemo and platelets.
I have to be honest, last night was possibly the most trying one for me in a while. Even more so than the hospital. I went to bed dead on my feet, with a husband who had not slept any significant amount of time in the last three days and was possibly even more tired than I was, and two babies, one of whom is a 2.5 week old who still hasn't decided that night time is for sleeping, and a two year old who is going on day number nine of twice per day steroids, which are messing with his sleep. So when one baby cried, they both did. When I was up with one, the other awoke immediately and loudly discovered my absence. I even committed the unpardonable sin of falling asleep in the recliner holding the smallest baby, even though I had only gotten up to suck his boogers out of his nose so I could nurse him instead of just lying there as he snorted, gasped, and licked me. I only sat for a moment for getting back up and going to bed...and woke up an hour later. I finally gave up on sleeping and was up well before the alarm rang to rouse us to leave by 8 am, so we could be down at Children's by 9:30. As it was, I still had no time to grab any breakfast, so washed down an iron supplement with a swig of V8, called it a balanced diet, and rushed around packing just in case we ended up spending the night. (Big thanks to Tina Latham and Christina Alpert for providing us bags of sundry items essential to a hospital stay, ranging from Chapstick to super soft blanket to ink pens to trail mix, cookies, and plantain chips to fingernail clippers. Stuff you don't think of unless you have been lying awake in the middle of the night in a hospital room with no option of procuring them, lessons learned through their times as a patient or caregiver.)
Even with a bit of backtracking (we tried to save money by skipping the E470 tollway, and two miles later, decided we had no time to get caught in a traffic jam, so turned around and caught I-25 back northbound to take the tollway after all) we made Childrens in an hour and five minutes. Not too bad. We once again expressed our gratitude that we only live an hour, instead of four and a half hours away from the facility we will be visiting at least twice a week for our foreseeable future.
The clinic was a nice experience, if involving of a lot of waiting, since they were pretty busy. Much more low-key than the last procedures in the big OR. Alex stole the show, as usual, and Daniel was as stoic as usual. I even left to go get lunch before they came to get him, so his dad held him as he drifted off to sleep for his lumbar puncture. This is how relaxed I am getting about my baby undergoing anesthesia. (Well, that, plus I was about to pass out, thanks to my balanced breakfast.) They drew spinal fluid to check again for cancer cells, plus a bit extra for saving and testing because we are in a clinical trial, injected methotrexate, his fourth new chemo, into his spine, then before he woke up, another dose of Vincristine, his second time for this particular chemo, into his chest port. I felt the other parents in the waiting room appraising us, the family who's child still possessed a full head of hair, with a bit of a "poor you" air, since we were obviously freshly diagnosed, not even on chemo long enough to have experiences hair loss, and obviously out of our element, bumbling about in a hospital maze, not sure where we were going or what to expect. They were the shiny-headed veterans, we the shell-shocked newbies.
Daniel's appetite has been nonexistent lately, in spite of predictions that his steroids will make his legitimately "hangry" the longer he is on it. Hangry as in, hungry/angry. We have been warned to expect full-on 'roid rage by the end of the month, plus such an increased appetite that some kids will push back from the dinner table just to vomit and return to the table to do it all again. Not to mention increased hormone production giving him a fat, puffy face, neck, shoulders and belly. So far, we haven't experienced any of this, just nausea and weight loss from the chemo. We actually thought we were experiencing quite a bit of attitude from him, but were sent back to reality by the sight of a kid today at the hospital in the middle of a full-on screaming tantrum. We realized how far we have to go yet from his matter of fact "no" to everything we suggest, to lying down and screaming because he was asked to pick up something he dropped. They also told us to not expect him to really attempt to walk until this month of steroids are over, because they cause muscle weakness in core muscles, legs and thighs, which makes walking painful in their own right, without being compounded by existing atrophy from a broken leg and the aching pain caused by the cancer in his bone marrow creating outward pressure in his bones. But we are still supposed to encourage walking. Sigh. This seems like an exercise in futility right now. We entertained ourselves while waiting for his procedures by watching cell phone videos from our vacation this summer of him walking, running, riding his trike, and from our ski trip in February of him swimming, ice skating and skiing. It was a good reminder that he has not always been broken, and he will be back to being his athletic, active, happy self someday.
Before we left, he also required another platelet transfusion. This was also a relief, because I had been thinking his lips were looking pale again, so we had also expected another blood transfusion as well. But his red blood cells were good.
It had been three days since his chemo that causes the most nausea, and he awoke this morning wanting food for the first time for three days. Of course, he had to be NPO (no food) until his procedure, but they gave him some Zofran (anti nausea) during, so as soon as he woke up they let me lie on his cot with him and breastfeed him. After that had primed his stomach, he proceeded to eat a single-serving package of animal crackers. On the way home, we bought him french fries, just to witness him enjoy food again, and he cleaned them out and held out the empty carton for more. This was more food than the total amount he has eaten in the last three days. When we got home, he chugged some carrot mango V8, and as I write he is nursing again. He even crawled across the floor on elbows and knees (his wrists hurt too much to use them for crawling) to come to my chair to ask for it- first time we have crawled anywhere by ourself instead of just crying to be carried in a long time.
Oh yeah, and this- no more worrying about him being constipated. We have been giving him a laxative for the last five days to get things on the move after anesthesia and pain meds. Yesterday, a near blow-out. Today, two exploded diapers. Down the legs, up the back, soaked carseat, then soaked recliner, the poor boy is cleaned out.
So things are looking up. Like the first signs of green in the spring, even if you know that many more episodes of freeze are still coming. Small things that will slowly become big things.
We left the hospital and loaded the babies into their carseats in the parking garage, where I looked down and noticed a piece of paper peeking out from under the vehicle. It looked like some sort of foreign currency. I picked it up and realized it was a new-style $100 bill. What?! B and I discussed how we could possibly find it's owner, looked around for cameras that might identify who had lost it, because as lucky as we felt finding $100 fluttering around, someone else also had reason to be at Children's hospital, possibly with a child sicker than ours, and had lost $100, making their day a really bad one. But we finally decided that finding it's owner would be next to impossible, and decided it would cover the next four weeks worth of tolls on our trips to the hospital.
And speaking of, my cousin Weylin Unruh has started a Gofundme page to cover Daniel's medical expenses and other expenses incurred over the next three years. We are slowly coming around to the idea that perhaps we can accept help from others. This, honestly, has almost been harder for us to wrap our minds around than the fact that our baby has cancer. Cancer, after all, has touched both of our families before. Bobby lost his 32 year old mom to breast cancer when he was seven years old, and my own mom has recently won a hard-fought victory against breast cancer, only a few years after my grandpa lost his battle with stomach cancer. Although it feels like a punch in the gut, it also feels like life. Why is it easier for us to accept that life is hard and every day that goes by without a game changing tragedy is an incredibly good day than it is for us to accept that people want to help make it easier for us? We look around, and all around us are people who have it harder than us, and who's needs are greater than ours, which makes us want to be all "aw, shucks" about our own daily issues and needs. But we are also coming out of the crisis management mode of last week, accepting that we have a brand new reality now. All last week, we were in such a haze of gratitude that our child has a curable disease and at the other end of his chemo marathon, we have a 90% chance of still holding and cuddling him, not burying him, that the details and logistics of making that happen were lost on us. By this week, we are realizing how incredibly thankful we are that we stayed on our good insurance with both premiums and deductibles we didn't think we could afford, because it turns out you can afford pretty expensive insurance when you realize how close you came to having to pay six-digit hospital bills on a five-digit income. But all the same, we are in a bit of a financial valley right now, thanks to the oilfield cutting wages, not to mention a lot of time off work for sickie times and trips to the hospital. My parents have spent a lot of money driving to see us, filling our fridge while here, buying diapers for us, etc. If someone wants to help them with some gas and groceries, or help us with the things our insurance doesn't cover like prescriptions, or send freezer meals, or donate to Daniel's Gofundme at http://www.gofundme.com/t4mdbck for random unforeseen expenses, we are now getting to the place we won't argue or try to turn it down. Accepting help is also our new reality. In spite of our guilt over not being able to return the favor right now or do anything but humbly say thank you and hope we can pay it back or forward some day. And it is humbling. But also such a blessing to realize how many people care, and how much so.
I have to be honest, last night was possibly the most trying one for me in a while. Even more so than the hospital. I went to bed dead on my feet, with a husband who had not slept any significant amount of time in the last three days and was possibly even more tired than I was, and two babies, one of whom is a 2.5 week old who still hasn't decided that night time is for sleeping, and a two year old who is going on day number nine of twice per day steroids, which are messing with his sleep. So when one baby cried, they both did. When I was up with one, the other awoke immediately and loudly discovered my absence. I even committed the unpardonable sin of falling asleep in the recliner holding the smallest baby, even though I had only gotten up to suck his boogers out of his nose so I could nurse him instead of just lying there as he snorted, gasped, and licked me. I only sat for a moment for getting back up and going to bed...and woke up an hour later. I finally gave up on sleeping and was up well before the alarm rang to rouse us to leave by 8 am, so we could be down at Children's by 9:30. As it was, I still had no time to grab any breakfast, so washed down an iron supplement with a swig of V8, called it a balanced diet, and rushed around packing just in case we ended up spending the night. (Big thanks to Tina Latham and Christina Alpert for providing us bags of sundry items essential to a hospital stay, ranging from Chapstick to super soft blanket to ink pens to trail mix, cookies, and plantain chips to fingernail clippers. Stuff you don't think of unless you have been lying awake in the middle of the night in a hospital room with no option of procuring them, lessons learned through their times as a patient or caregiver.)
Even with a bit of backtracking (we tried to save money by skipping the E470 tollway, and two miles later, decided we had no time to get caught in a traffic jam, so turned around and caught I-25 back northbound to take the tollway after all) we made Childrens in an hour and five minutes. Not too bad. We once again expressed our gratitude that we only live an hour, instead of four and a half hours away from the facility we will be visiting at least twice a week for our foreseeable future.
The clinic was a nice experience, if involving of a lot of waiting, since they were pretty busy. Much more low-key than the last procedures in the big OR. Alex stole the show, as usual, and Daniel was as stoic as usual. I even left to go get lunch before they came to get him, so his dad held him as he drifted off to sleep for his lumbar puncture. This is how relaxed I am getting about my baby undergoing anesthesia. (Well, that, plus I was about to pass out, thanks to my balanced breakfast.) They drew spinal fluid to check again for cancer cells, plus a bit extra for saving and testing because we are in a clinical trial, injected methotrexate, his fourth new chemo, into his spine, then before he woke up, another dose of Vincristine, his second time for this particular chemo, into his chest port. I felt the other parents in the waiting room appraising us, the family who's child still possessed a full head of hair, with a bit of a "poor you" air, since we were obviously freshly diagnosed, not even on chemo long enough to have experiences hair loss, and obviously out of our element, bumbling about in a hospital maze, not sure where we were going or what to expect. They were the shiny-headed veterans, we the shell-shocked newbies.
Daniel's appetite has been nonexistent lately, in spite of predictions that his steroids will make his legitimately "hangry" the longer he is on it. Hangry as in, hungry/angry. We have been warned to expect full-on 'roid rage by the end of the month, plus such an increased appetite that some kids will push back from the dinner table just to vomit and return to the table to do it all again. Not to mention increased hormone production giving him a fat, puffy face, neck, shoulders and belly. So far, we haven't experienced any of this, just nausea and weight loss from the chemo. We actually thought we were experiencing quite a bit of attitude from him, but were sent back to reality by the sight of a kid today at the hospital in the middle of a full-on screaming tantrum. We realized how far we have to go yet from his matter of fact "no" to everything we suggest, to lying down and screaming because he was asked to pick up something he dropped. They also told us to not expect him to really attempt to walk until this month of steroids are over, because they cause muscle weakness in core muscles, legs and thighs, which makes walking painful in their own right, without being compounded by existing atrophy from a broken leg and the aching pain caused by the cancer in his bone marrow creating outward pressure in his bones. But we are still supposed to encourage walking. Sigh. This seems like an exercise in futility right now. We entertained ourselves while waiting for his procedures by watching cell phone videos from our vacation this summer of him walking, running, riding his trike, and from our ski trip in February of him swimming, ice skating and skiing. It was a good reminder that he has not always been broken, and he will be back to being his athletic, active, happy self someday.
Before we left, he also required another platelet transfusion. This was also a relief, because I had been thinking his lips were looking pale again, so we had also expected another blood transfusion as well. But his red blood cells were good.
It had been three days since his chemo that causes the most nausea, and he awoke this morning wanting food for the first time for three days. Of course, he had to be NPO (no food) until his procedure, but they gave him some Zofran (anti nausea) during, so as soon as he woke up they let me lie on his cot with him and breastfeed him. After that had primed his stomach, he proceeded to eat a single-serving package of animal crackers. On the way home, we bought him french fries, just to witness him enjoy food again, and he cleaned them out and held out the empty carton for more. This was more food than the total amount he has eaten in the last three days. When we got home, he chugged some carrot mango V8, and as I write he is nursing again. He even crawled across the floor on elbows and knees (his wrists hurt too much to use them for crawling) to come to my chair to ask for it- first time we have crawled anywhere by ourself instead of just crying to be carried in a long time.
Oh yeah, and this- no more worrying about him being constipated. We have been giving him a laxative for the last five days to get things on the move after anesthesia and pain meds. Yesterday, a near blow-out. Today, two exploded diapers. Down the legs, up the back, soaked carseat, then soaked recliner, the poor boy is cleaned out.
So things are looking up. Like the first signs of green in the spring, even if you know that many more episodes of freeze are still coming. Small things that will slowly become big things.
We left the hospital and loaded the babies into their carseats in the parking garage, where I looked down and noticed a piece of paper peeking out from under the vehicle. It looked like some sort of foreign currency. I picked it up and realized it was a new-style $100 bill. What?! B and I discussed how we could possibly find it's owner, looked around for cameras that might identify who had lost it, because as lucky as we felt finding $100 fluttering around, someone else also had reason to be at Children's hospital, possibly with a child sicker than ours, and had lost $100, making their day a really bad one. But we finally decided that finding it's owner would be next to impossible, and decided it would cover the next four weeks worth of tolls on our trips to the hospital.
And speaking of, my cousin Weylin Unruh has started a Gofundme page to cover Daniel's medical expenses and other expenses incurred over the next three years. We are slowly coming around to the idea that perhaps we can accept help from others. This, honestly, has almost been harder for us to wrap our minds around than the fact that our baby has cancer. Cancer, after all, has touched both of our families before. Bobby lost his 32 year old mom to breast cancer when he was seven years old, and my own mom has recently won a hard-fought victory against breast cancer, only a few years after my grandpa lost his battle with stomach cancer. Although it feels like a punch in the gut, it also feels like life. Why is it easier for us to accept that life is hard and every day that goes by without a game changing tragedy is an incredibly good day than it is for us to accept that people want to help make it easier for us? We look around, and all around us are people who have it harder than us, and who's needs are greater than ours, which makes us want to be all "aw, shucks" about our own daily issues and needs. But we are also coming out of the crisis management mode of last week, accepting that we have a brand new reality now. All last week, we were in such a haze of gratitude that our child has a curable disease and at the other end of his chemo marathon, we have a 90% chance of still holding and cuddling him, not burying him, that the details and logistics of making that happen were lost on us. By this week, we are realizing how incredibly thankful we are that we stayed on our good insurance with both premiums and deductibles we didn't think we could afford, because it turns out you can afford pretty expensive insurance when you realize how close you came to having to pay six-digit hospital bills on a five-digit income. But all the same, we are in a bit of a financial valley right now, thanks to the oilfield cutting wages, not to mention a lot of time off work for sickie times and trips to the hospital. My parents have spent a lot of money driving to see us, filling our fridge while here, buying diapers for us, etc. If someone wants to help them with some gas and groceries, or help us with the things our insurance doesn't cover like prescriptions, or send freezer meals, or donate to Daniel's Gofundme at http://www.gofundme.com/t4mdbck for random unforeseen expenses, we are now getting to the place we won't argue or try to turn it down. Accepting help is also our new reality. In spite of our guilt over not being able to return the favor right now or do anything but humbly say thank you and hope we can pay it back or forward some day. And it is humbling. But also such a blessing to realize how many people care, and how much so.
Wednesday, April 29, 2015
Hey, it's good to be back home again...
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.
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.
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.
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