Jeremy and Michelle

Over the weekend while I was home I took care of a lot of things. I did a Sam's club pickup order which I have never done before and I grabbed groceries and things from Walmart as well. I let the older kids stay home from school because they had missed me and for all intents and purposes it's terrifying to hear your brother is sick enough to be in the hospital and that he will be sick for a long time.  It was a well needed mental health day for them. I was home from Saturday night to Tuesday morning and every night I had at least 3 kids in my room with me. It was so good for them that I came home.  We also went to Fred Meyer because they had some good deals on toys and I had the kids pick out toys as prizes and bribes for Henry. My sister asked me if it was nice to have my Annabelle helper back and I told her it was nice to have the other half of my brain with me. Mary and our friend Sam came over and started working on the house.  I had tried to straighten up and pu...

Henry has been pretty ornery in the middle of the night and today. He is sick of blood pressures, blood work, the pulse ox finger thing and any nurse or doctor or tech that comes in that isn't mommy or daddy.  I just want to express how greatful I am right now for the kind man who came in to do an x ray.  There has been a concern that Henry is constipated. With his meds slowing things down and the possibility of infection from a hard bowel movement causing micro tears in his bowel they have been telling g us he needs stool softener and we keep telling them that he really doesn't have much to poop. He hasn't eaten much since before we came and less after. The nurse told us the doctor ordered an x ray to see how much is in there, at least that is what I assumed because they didn't mention the order.  This man who did the x ray was so kind and gentle. Henry yelled and didn't want him to touch him or move him. The tech guided me how to position Henry and also made sure ...

So much better. He still has cancer. There are lists of meds and precautions and so much care but Friday Henry was acting more like his normal self. He woke up like turning on a light just like he does at home when he is feeling well. 5:59am like clockwork. He asked daddy if he could go downstairs now because that is what he asks every morning at home. It's his routine. He was sad to find out he was still in the hospital but we distracted him with a list of things we could do. He also started giving his dad a hard time. He told the nurses at morning shift change "if you are wondering why it stinks in here it's because my dad farted".  Perfect,  precocious Henry.  One of the things he asked in the morning was "Mom, what's this on my neck?" He was sad when we took a picture to show him it was a stitch from getting his port. We decided to put a band aid on it when he told us he really wanted to pick it. This guy will pick anyones scab if they let him a...

I have to say my account of what happened Wednesday night going into Thursday is some fuzzy or pieced together from what I know now. I was so exhausted from staying up in the night with Henry since Monday, that I missed some of the heightening concern for Henry's health.  I just kept falling asleep but I know that Henry's heart rate and blood pressure were high and climbing. The nurse came in and gave him a finger poke to check for anemia. The samples they took of his blood had been contaminated and they needed more to find out why his heart was literally racing.  Henry's heart rate got up above 200 beats per minute.  A little while later we found out that Henry was very anemic. They wanted to give him a transfusion but they needed to redo his blood work for that so it took until about midnight to get his new blood started.  Around 2 is when I woke up rested enough to trade with Jeremy. His heart rate had come down to 170 and over the next few hours dropped to a much...

Wednesday was long. Since Henry was wide awake from midnight to six mom didn't sleep too much either. He started to get hungry around 5 and started asking for daddy to come back because he wasn't allowed to eat or drink anything until after the procedures so I was being mean to him and not letting him eat. Henry had been in pain despite a couple meds he was taking and we asked what we could do about it. The doctor said that basically until he gets the chemo his body will keep trying to fight the cancer and he will keep fevering and having pain.  We were set to start the chemo meds right after his procedures. We didn't have a time for those procedures until 10 and they were scheduled for 1:30pm. Most of the day he was sore and grumpy and dreaming about eating. He wanted a chicken leg like a character in How to Train you Dragon 3 has and root beer. Jeremy teased the nurse that because she got everything ready and all her ducks in a row that the procedure time would be pushed...

This hand gave him lots of trouble. This is Henry's favorite line from the disc menu for Prisoner of Azkaban Tuesday Henry fevered and slept off and on. His temp getting up to 102 with round the clock meds. Every time the door opened he would get upset that another doctor was coming to poke him or bother him. He hated the iv in his hand and his hands and feet hurt. The doctor came in and wrote on the white board a treatment plan starting with more tests.   He told us for boys it is typically around 2 and a half years of treatment. First they wanted an ultrasound on his heart. After they get results for that they would do 3 things at once to minimize the amount of time he would be under anesthesia. A lumbar puncture to check his spinal fluid for cancer cells and to inject some Chemo meds directly into his spinal fluid. A bone marrow biopsy to check his specific make up of leukemia. The last thing they wanted was to put in an access port to Henry's heart so th...

When we walked into the Primary Children's Hospital ER our expectation was to get some tests done and speed up the diagnosis process for whatever type of Autoimmune disease Henry had. We had researched and there is a list of different types of Arthritis and the prognosis would vary.  Jeremy and I each had the thought that we should pack a day bag or grab some extra things just in case it was a one night stay but we both also decided against. Checking in Henry was hurting enough that we took turns carrying him and they checked his temp and asked some of his symptoms. I started telling the whole story and the nurse said "we just need a snapshot of what is going on".  Henry heard shot and started crying and getting worked up and upset about "no pokies!".  We calmed him down and waited a few minutes until we were called back.  We told the ER resident, nurse and doctor that we had an appointment with the Rheumatologist and we just couldn't wait anymore with Hen...

Writing this is hard because now that we have a diagnosis we are seeing signs that maybe we shoulda coulda woulda seen before.  In the end of April Henry started waking up in the night crying that his tummy hurt. After the second night of him waking up crying about his tummy I guessed he was maybe constipated and took him into the doctor because no kid should be crying in the night in pain like he was. Whichever PA or NP we saw ordered an x ray and we got a call next day that there was a normal amount of poop. I gave him medicine to help him poop and tylenol and ibuprofen for his pain and he pooped a couple days later and seemed to feel better. 2 weeks later when the same thing happened I took him in again. They ordered a CBC but I didn't want the xray because he was super upset the first time and I figured he would just poop and feel better.  And he did. The CBC was normal. Then last day of May, seemingly unrelated to his tummy, his wrists started hurting in the night and by ...