Jeremy and Michelle

I just want to take this time to think about all of the blessings we have been blessed with.  As far as cancers go, we have a pretty great prognosis. There are different factors like age and type that do make a difference. So far Henry’s age is a benefit as well as the type he has. He does have something called the Philidelphia Chromosome which can increase his chances of relapse or decrease the effectiveness of the chemo medicines. A blessing regarding that is Primary Children’s hosptal and their Hemotology/Oncology team are enrolling patients with this chromosome in a study to add another medicine that has been studied and proven to counter those issues. We would not be able to get this med anywhere for our child unless we are part of the study that the hospital is already working with. We feel like Primary Children’s Hemotology/Oncology team is pretty awesome but I think this is the reason both Jeremy and I have felt like we couldn’t go to another qualified place before we even...

Setting up a transfusion across state lines and with various doctors can seem complicated and overwhelming.  Thankfully at Primary Children's Hospital they set you up with a case manager/care coordinator.  She took care of everything and then called to tell me I should be hearing from some one at EIRMC soon.  I gave it a couple hours and called them. They said they needed orders from a doctor and still hadn't received them. I called our awesome case manager and she said because they don't have rites to have a doctor in Utah send over an order to a hospital in Idaho they needed to talk to our primary caregiver/family doctor and have them send the orders over. So I called our family doctor except it's Friday and the main doctor we see is out of the main office at a different facility this Friday. I left a message with them to call back.  Having had experience in the past we knew that once the doctor's office/clinic in Utah/hospital doctors go home on Friday our chan...

That is what I told my husband when got home with Annabelle and Henry last night at 10:30. Since I had been up with Henry until almost 2am 6:30 came pretty quick.  That is when the baby woke up and I got her back to sleep. Then Henry woke up ready to eat again at 7. I think I wandered around most of the morning getting things ready, it's hard to remember now 😕 I woke up Annabelle because I decided to take her with me on our first trip, just in case.  Oh boy was she a life saver.  My mom came at 7:30.  Henry wanted Captain Crunch cereal but we didn't have any. I called and asked my mom to bring some if she had it and luckily she did.  I checked the oil on the car and loaded it up with a pillow, blankets, our collapsible wagon, phone and tablets and chargers, a few snacks, supplies to put numbing cream on Henry's port an hour before the appointment, and some extra Pepsi.  My mom warned me because she had felt impressed by my dad that I should 'be attentive"....

So the dose of steroid (dexamethozone) that Henry is on is higher/stronger than what he has been on in the past.  When he isn't sleeping and nauseous he is hungry.  At 5 am the first day home he woke up to go potty and wanted to eat.  He wakes up and asks for food and then when we don't have what he wants or my husband tries to hold him off and get him to go back to sleep. At the same time the next morning I got up with him. He ate most of a Nathan's hot dog (the kind they have at Sam's Club but regular bun length)  he ate that while he was waiting for his Totino's pizza to bake that he was crying for before we came downstairs.  He ate the cheese and meat off of half of the pizza and then was still hungry so he ate a bowl of cereal. After that he got full enough to go back to sleep. Sunday morning he woke up at 4 crying that he wanted sausages and he wanted his daddy to go down and check the freezer and fridge for some so he could have them. Jeremy knew we didn'...