Harvey G’s Cancer Journey

Harvey

Harvey’s Journey Begins: Meet The Goldades

March 18th, 2022 started like any normal day for Harvey and ended with him undergoing emergency surgery. Harvey has been diagnosed with b-cell acute lymphoblastic leukemia. (UPDATE: He is now diagnosed with Philadelphia-like acute lymphoblastic leukemia.) The symptoms that prompted our visit to the clinic were a fever and rash, but we quickly learned he was deteriorating internally with 95% of the cells in his blood becoming cancerous…  [ Read More ]

Latest Updates

Day 62 – May 19, 2022

    May 19, 2022   2
1:55 pm: Boring is never a word we use much in our family. Today is a perfect case in point. Harvey and I (dad) are camping out in our hospital room, passing the time as we wait for his blood cultures to return and ANC levels to rise. He received a blood transfusion this morning

Day 61 – May 18, 2022

    May 18, 2022   0
10:00 pm: Harvey is sleeping peacefully in his hospital bed after a (mostly) quiet Wednesday. The worst part of his day was when they accessed his port. They stick a 22 gauge needle through his skin and into his port. It hurts. 🙁 He dislikes it to the point that he asks me every morning

Day 60 – May 17, 2022

    May 17, 2022   3
5:45 pm: Harvey had another routine procedure today. Each one breaks my heart and is difficult. It never feels routine even with our amazing care team. Here is a look into today’s procedure and a glimpse of Harvey’s new normal.

Day 53 – May 10, 2022

    May 8, 2022   0
3:45 pm: We’ve arrived back home! Today certainly lived up to all the hype. Ugh! Harvey had and continues having mild reactions to the 100 ml of pegaspargase he received. Nausea and rashes have certainly been problematic, but thankfully didn’t prevent him from receiving today’s full dose. He will receive one more round weeks from

Day 46 – May 3, 2022

    May 3, 2022   6
11:00 pm: Harvey’s procedure went well today. He was put to sleep (thanks, propofol!) and had chemotherapy administered intrathecally at 8:30 am. Typically, he’s only asleep for about 15-30 minutes, but wakes up with another battle wound on his back. This afternoon was the first time he’s complained of back pain and he now has

Day 45 – May 2, 2022

    May 2, 2022   1
11:30 pm: Happy May! Today marks the first full week of Harvey’s consolidation stage of cancer treatment. Each day has started to feel more monotonous than the next: Scheduled medications, personal care, appointments, and cold/rainy weather. We’ve been mindful of trying to introduce new activities, games, and ways to stay active to keep this all

Day 41 – April 28, 2022

    Apr 28, 2022   2
7:00 pm: We are now 3 days into Harvey’s consolidation phase of cancer treatment. He is receiving 3 different chemotherapy medicines per day (consisting of 9 pills and 1 infusion) as well as medicine for nausea and elevated blood pressure. With the help of a daily in-home nurse visit, this full gamut of medications can

Day 39 – April 26, 2022

    Apr 26, 2022   5
10:30 am: Harvey is awake after his spinal tap procedure. He is now getting hooked up for his next dose of chemotherapy. I took a few pictures and videos of what these visits look like for us behind the scenes. 8:40 am: We’ve arrived at the clinic. Harvey is in his procedure room preparing to

Day 38 – April 25, 2022

    Apr 25, 2022   3
6:30 pm: Today was supposed to be Harvey’s first official day of the consolidation phase of treatment. For some reason, our scheduled procedure for this morning was canceled over the weekend. We instead met with physical therapy to focus on regaining strength lost from the first rounds of treatment (induction). We then reviewed latest blood

Day 35 – April 22, 2022

    Apr 22, 2022   2
10:30 pm: Harvey’s morning appointment went well. His ANC level rose to .500, up from Wednesday’s reading of .160. An ANC of .750 is required to continue his treatment and his medical team is confident he’ll continue trending up over the weekend and will reach .750 by Monday. Therefore, his next procedure is scheduled for

Day 33 – April 20, 2022

    Apr 20, 2022   2
7:15 pm: Now that Harvey’s induction phase of treatment is officially done and we have full bone marrow test results, we are preparing to begin his consolidation phase of treatment. Today, we met with Harvey’s care team to get labs drawn and discuss his specific treatment plan for consolidation, which will include the drug ruxolitinib.

INDUCTION RESULTS: Day 32 – April 19, 2022

    Apr 19, 2022   5
7:45 pm: Harvey simply amazes me. He is solution-minded and logical. He absolutely HATES taking numerous crushed pills orally every day because, without a doubt, they have a horrible taste! After a quick discussion with mom this morning, he learned that it’s possible to swallow them whole without tasting them. And that’s all he needed

Day 31 – April 18, 2022

    Apr 17, 2022   1
10:30 pm: We’ve been in survival mode since arriving home from the hospital with Harvey last Wednesday. Lindsey and I both have terrible, achy colds that have kept us masked, not sleeping, and distancing from each other. We’ve been especially vigilant around Harvey, only getting close to him when absolutely necessary. He has no immune

Day 28 – April 15, 2022

    Apr 15, 2022   2
7:00 pm: Cold. That’s the word of the day. It’s cold outside. We have a cold spreading through our home. Impeccable timing! Lindsey and I almost have to laugh (to not cry) when acknowledging our luck: The moment we arrive home with our immunocompromised child with cancer, we have sickness spreading from kid to kid

Day 26 – April 13, 2022

    Apr 13, 2022   8
11:40 pm: We’ve awaited this day since Harvey was admitted to the hospital nearly a month ago. We’re all home tonight under one roof as a family. Thank you all so much for everything! I mean everything. When it felt, at times, that we couldn’t make it another day, we were backed by the love

Day 25 – April 12, 2022

    Apr 12, 2022   8
9:00 pm: It’s popcorn and movie night! We are winding down and will be ready for bed soon. Harvey’s nurse this evening is Rui, who skillfully and carefully shaved heads in this very room last evening. Truth be told, he was an actual hair stylist in his past life. The saying around here is “Rui

Day 24 – April 11, 2022

    Apr 11, 2022   1
1:10 pm: “Leave me alone! Can’t you see I’m trying to sleep here?” exclaimed Harvey at 5 am as his nurse was trying to get his blood pressure. That’s the moment I knew he was going to be ornery today. I’m here to report that I was right. He’s ready to break out of this

Day 23 – April 10, 2022

    Apr 10, 2022   2
7:30 pm: Our original plans for today had us all in Rochester, MN. Outside enjoying 60° temperatures. Celebrating a birthday with beloved family friends. As I look out our hospital room window facing south, I’d give anything to be in our previous life. Over the horizon some 90 miles, beyond my line of sight, we’d

Day 22 – April 9, 2022

    Apr 9, 2022   3
10:00 pm: Harvey had an uneventful day, relaxing and playing with mom at the hospital. He is currently winding down with a bowl of Fruit Loops and watching ”Mickey’s Twice Upon A Christmas” before bed. Our pantry at home is typically stocked with Cheerios, Kix, and Corn Flakes, but not Fruit Loops (or other sugary

Day 21 – April 8, 2022

    Apr 8, 2022   1
4:15 pm: Harvey is lively today! Lindsey and I are enjoying every single moment of it. He had a great night of sleep, has been eating well, and has been very active. So far he’s had 2 full walks, spent 30 minutes playing “chef Harvey” in the playroom kitchen, pedaled the tricycle all around the

Day 20 – April 7, 2022

    Apr 7, 2022   6
10:30 pm: I will never forget March 25, 2021. We lived in Rochester, MN. 8:00 pm. I had just put Hattie to bed, and I was now in Harvey’s bedroom reading him a bedtime story. We had just heard what sounded like fireworks. I paused reading mid-sentence. Forget the bedtime story! Down the stairs we

Day 19 – April 6, 2022

    Apr 6, 2022   3
8:15 pm: I just introduced Harvey to his web site. We have been sharing every comment, email, phone call, text message, and card that has been sent wishing him well. Thank you all so much! I want to share with you how much he loves it. ❤️ 7:45 pm: Harvey napped for most the afternoon.

Day 18 – April 5, 2022

    Apr 5, 2022   2
10:15 pm: Harvey had a day of tough side effects including vomiting, tachycardia (high heart rate – 150 bpm while laying in bed), and low glucose levels. While it seems our care team have seen this all before, it’s another thing we worry about right now. He is still tired, but more energetic when he

Day 17 – April 4, 2022

    Apr 4, 2022   1
9:45 pm: Technology can be amazing. (The lack of technology in certain aspects of our lives can also be amazing!) Each of our kids have iPads. They are configured with settings to limit excessive use of entertainment apps, promote learning and exploration (checking the weather, researching places on the globe, taking pictures, etc.), and to

Day 16 – April 3, 2022

    Apr 3, 2022   2
9:40 pm: Harvey and I had a quiet Sunday together. We snuck in 4 walks together (they want at least 3 daily). I know. Overachievers, aren’t we? Selfishly, I love our walks that take us into the family waiting area which includes a view of the Minneapolis skyline and, more importantly, coffee! As the Keurig

Day 15 – April 2, 2022

    Apr 2, 2022   0
10:45 pm: There are so many dimensions of difficulty baked into the situation we find ourselves in right now. I’m really seeing the effects that Harvey’s diagnosis is having on our entire family, but I feel guilty saying this isn’t only 100% affecting him. This is his hell, and there’s nothing as parents we can

Day 14 – April 1, 2022

    Apr 1, 2022   0
1:30 pm: I’m spending the day with Hattie & Henry, so there may be a gap in updates today. I checked in with Lindsey and Harvey a little after noon: He is having a rough day with intermittent vomiting. This morning, he had an x-ray of his stomach to hopefully help determine why it is

Day 13 – March 31, 2022

    Mar 31, 2022   1
7:40 pm: Harvey & Hattie were chatting via FaceTime tonight. I was recording them to capture the cute moment they were sharing (although Harvey was slightly moody.) I had to abruptly end the recording because I was breaking down behind the camera. Hattie: “I love you, baby. I’m just… It’s ok, buddy. I’m sorry you

Day 12 – March 30, 2022

    Mar 30, 2022   4
8:45 pm: Harvey is asleep for the night (hopefully). After his “worst shower ever,” we made some popcorn and watched “The Polar Express.” Another one of his favorite movies! (If you’ve ever watched the movie, you might be a little creeped out by the animation. It has to do with the uncanny valley theory, where

Day 11 – March 29, 2022

    Mar 28, 2022   2
5:00 pm: Speaking honestly, it’s been a really hard day. We met with Dr. Miller and nurse practitioner Julie late this morning and learned that Harvey’s initial genetic testing results arrived. I’m going to be as concise and (hopefully) accurate as possible with the overwhelming amount of information we received. Indications are that Harvey has

Day 10 – March 28, 2022

    Mar 27, 2022   1
8:00 pm: Harvey had a low-energy day. We attempted to go for a walk a few times, but his knees are starting to hurt and we’re having to carry him for most of the way. This pain is to be expected with the chemotherapy drugs he’s receiving. He even turned down visiting the playroom (which

Day 9 – March 27, 2022

    Mar 27, 2022   1
10:00 pm: Lindsey spent the afternoon and evening with Harvey while I ran home to see Henry and Hattie. Grandma and grandpa Goldade had been their caretakers since Harvey’s diagnosis on March 18th. We said goodbye to them today and welcomed our family friends, the Bisbeys. Hattie was so excited to play with her friends,

Day 8 – March 26, 2022

    Mar 26, 2022   0
9:00 pm: On Thursday (Day 6), our Mayo Clinic family delivered an amazing care package for Harvey and our family. All items neatly packaged in a rolling dinosaur suitcase with each pocket/compartment containing a different, extremely thoughtful surprise for us. Thank you all so much!! It’s hard to find the words to express our gratitude,

Day 7 – March 25, 2022

    Mar 25, 2022   0
6:50 pm: So thankful that Lindsey is able to return home this evening and spend time with Hattie & Henry. I hope she’s able to stay at our home tonight and get a good night of restful sleep. If you’re reading this, Lindsey, please get some sleep! Harvey and I are holding down the fort

Day 6 – March 24, 2020

    Mar 24, 2022   3
9:50 pm: We have a new port-a-cath placed. He’s such a champ. So big and brave even though we could tell how nervous he was during the replacement. Bedtime for us. Goodnight! 8:50 pm: A bit of an eventful evening. Harvey’s port-a-cath tubing developed a leak in the line, and we’re in the process of

Day 5 – March 23, 2022

    Mar 23, 2022   4
10:30 pm: I arrived back at the hospital just in time to catch Harvey waking up, eating, chatting casually about anything that comes to his mind, and sharing his secrets with me. He took me for a walk to show where they “hide” all the good snacks around this joint. His stomach is full and

Day 4 – March 22, 2022

    Mar 22, 2022   0
8:30 pm: Harvey continues to lose his energy and strength (as planned) as the effects of his treatment are in full force. He wakes up and is active for a few minutes at a time, then asks to return to bed shortly thereafter. The next big treatment for him will occur on Friday, March 25th.

Day 3 – March 21, 2022

    Mar 21, 2022   2
10:50 pm: All things considered: Today was a really great day. We learned two very important things. 1. Harvey’s body is responding to the treatments favorably and as expected thus far. If I pretend like I know what I’m talking about for just a moment, I recall hearing that some of the proteins found (around

Day 2 – March 20, 2022

    Mar 20, 2022   5
10:30 pm: Chemotherapy and the concoction of medications Harvey is receiving has unquestionably impacted his energy and mood. Our cuddly, active, loving boy is being overcome with feelings of restlessness, longing for home & siblings, and anxious to get back outside. Back to school and swimming lessons. Back to normal. We continue to monitor his

Day 1 – March 19, 2022

    Mar 19, 2022   0
7:00 pm: From Harvey’s perspective, this wasn’t a bad day. After his chemotherapy, he was up and moving, making visits to the playroom, exploring every inch of hallways on our floor, and finding out where all the snacks are stored. He took a much needed nap at 5 pm, and was up and ready for

Harvey’s Journey Begins: Meet The Goldades

    Mar 18, 2022   3
March 18th, 2022 started like any normal day for Harvey and ended with him undergoing emergency surgery. Harvey has been diagnosed with b-cell acute lymphoblastic leukemia. (UPDATE: He is now diagnosed with Philadelphia-like acute lymphoblastic leukemia.) The symptoms that prompted our visit to the clinic were a fever and rash, but we quickly learned he