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.