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.