You never expect to be told that your child has leukemia. Cancer? How? Why? He's only 3 years old. But I can't say that I'm completely surprised by this life changing diagnosis, as I've felt God has been preparing me for this for quite some time. I have experienced overwhelming moments of God speaking to me these last couple years about the preciousness of human life and how God has planned all of our days even before we were born. As weird as it sounds, my motherly intuition and God's Holy Spirit have been preparing me for this day...for this diagnosis. And as hard as it may be for some to believe, I know that this was meant to be part of Harvey's story, a part of our family's story, and part of God's greater story that's being told through the lives of his children, like Harvey.
The week before Harvey was diagnosed, I started to notice changes in him that just weren't normal. He ended up in the ER on Father's Day when his mouth hurt so bad he couldn't open it or swallow. They diagnosed it as a gingival virus. His follow up visit with the pediatrician the next afternoon confirmed he was perfectly fine. While the mouth pain had gone away, new symptoms started to appear throughout the next week. He started to look really tired and pale, and his eyes lacked their usual bright sparkle. Assuming he was growing, or tired from the loss of sleep from being at the ER, I didn't think much of it. He grew more pale and lethargic the days following, and when he started to experience extreme pain in his legs, causing him to cry over the thought of walking, I knew it had to be something more than growing pains. From there, the symptoms just started to snowball, with bloody noses, fluctuating fevers, stomach pain and irritability.
All of his symptoms occurred over the course of a week. I told my husband that I thought he may have something like leukemia, although it didn't seem right to make such extreme assumptions. We took him back to his pediatrician where I shared my concern that Harvey may have a more serious condition, like leukemia. We were sent to the hospital for blood tests. While we were waiting for the test results, Harvey perked up and started talking about Chick-fil-A nuggets, his favorite ❤️ This moment was definitely the comic relief right before the doctor walked in. The look in someone's eye when they are about to tell you that your child probably has cancer says it all, and my eyes began to flood even before the doctor spoke a word.
That night we were transferred to American Family Children's Hospital in Madison. Even though Harvey's face was stripped of emotion and color, I could tell that he was excited to leave the hospital and ride on the stretcher in the ambulance to Madison. He loves ambulances. It was a much deserved treat for a little boy after having so many tears over IVs and blood work and all the goings on of the ER. We like to pray for the ambulances and paramedics when we hear their sirens, so when it was our turn to actually ride in one, it really made our hearts grow with empathy for those who have experienced that ride.
American Family Children's Hospital
We arrived to a quiet, clean room in Pediatric Oncology where we spent the rest of the early morning hours talking to doctors and nurses who prepped us on the next course of action for Harvey. We couldn't have imagine a more peaceful place to come to with a welcoming team of experts ready to help our little boy. They have been over-the-top incredible during this initial phase of Harvey's treatment at the hospital.
PRAISE: For such knowledgeable nurses and doctors overseeing his treatment.
PRAYER: For their guidance as they see him through each phase of his treatment these next few years.
Diagnosis: Acute Lymphoblastic leukemia (ALL), B-cell
Harvey has acute lymphoblastic leukemia (ALL), caused by a rapid increase of immature lymophocytes (lymphoblasts), which would have normally developed into mature white blood cells. There are several subgroups of ALL, which are based on whether the cells developed from cells that would have become B cells or T cells. Harvey's subgroup is B-cell ALL.
PRAISE: Currently, 95% of children receiving treatment attain remission, and 75-85% of children are cured (defined by remaining in remission for at least 5 years after diagnosis). After analyzing several features related to Harvey and to the leukemia cells, he will most likely remain in the average-risk category.
Transfusion: Blood & Platelets
Harvey's first immediate need when we arrived at the Children's Hospital was a blood and platelet transfusion for his anemia. His blood counts were so low, and his body had adapted to functioning at such a low level, that the transfusion couldn't be rushed, otherwise it would shock his body if he received too much blood too quickly.
PRAISE: transfusions went well and his numbers are going back up. His hemoglobin went from a 4 to an 8 (normally it should be 11-12) so his coloring is improved and he looks more alive! His hemoglobin has been fluctuating between 7-8, which are normal levels for going through chemo treatment.
Surgery: Bone Marrow Biopsy, Spinal Tap & PICC Line
After transfusions, Harvey needed a bone marrow biopsy, spinal tap, and PICC line. 80% of Harvey's blood cells in the marrow were leukemia cells. His bone marrow is also going through cytogenetic analysis to identify characteristics of the leukemia cells in order to help plan the best therapy and predict how he will respond to treatment. We won't have the cytogenetic results for another week or so, but it looks like he will respond normally to treatment.
At the same time, a sample of the cerebrospinal fluid was obtained through a spinal tap to confirm whether or not there were leukemia blasts in the cerebrospinal fluid. He also received chemo in his cerebrospinal fluid, in case blasts were there. The results came back with NO blasts found, but since some can still hide out and go undetected, he will have another spinal tap on day 8 and 29 of treatment and receive chemo in the cerebrospinal fluid again.
Lastly, they placed a PICC (peripherally inserted central catheter) line through a large vein in the inner elbow area that's threaded into a large vein above the right atrium of the heart. The PICC line replaced his IV and will be used to deliver chemotherapy, antibiotics, other medications. We will not be using the PICC line at home to administer any medication to Harvey (it's only done in clinic). But we do have to disconnect it daily to flush the catheter and recap it.
PRAISE: surgery for bone marrow biopsy, spinal tap and PICC line went well. leukemia blasts were not found in his cerebrospinal fluid. This means that he has a better prognosis than those who do.
PRAYER: The cytogenetic test will come back with good results, putting him on the normal track for treatment. That his second and third spinal taps on July 5th and 26th will be performed without complication and no leukemia blasts would be found. That our daily flushes of his PICC line at home will go smoothly.
Treatment for ALL: Induction, Consolidation, Maintenance
Treatment is divided into phases: induction, consolidation, and maintenance. Induction is the initial phase of treatment and lasts around 4 weeks. It's purpose is to induce a complete remission (absence of any sign of disease) in the shortest amount of time possible. We have been receiving the first portion of his treatment in the hospital where he has been closely monitored and all of his numbers look right on par, but the rest will be administered at home, and we will come back to Madison once a week for his chemo treatments. However, since he is neutropenic (low count of white blood cells due to chemo), he is at a high risk for not being able to fight infection, so he will be readmitted at any sign of fever or infection.
Complete remission - the absence of any signs of disease - is determined by analyzing bone marrow samples from leukemia cells. Kids who achieve remission in the first 7-14 days have an extremely good chance of long-term survival. Harvey has been right on track with responding to treatment, and we know he can reach remission during these first couple weeks of induction.
Even though 95% of kids with ALL achieve remission during induction, they would quickly relapse without further therapy. So the next phase of consolidation is to continue killing the remaining leukemic cells and stop new diseased cells from forming. Because cancer cells are unstable, mutate frequently, and become resistant to the drugs that initially kill them, Harvey will go through consolidation therapy that consists of new combinations of drugs designed to destroy the cancer cells that survived induction and stop the development of new cancer cells.
The final phase is maintenance which consists of lower-dose chemotherapy that lasts for a few years and kills any remaining leukemia cells. This portion of treatment will be less toxic and hopefully easier for Harvey to tolerate than induction and consolidation.
PRAISE: Harvey is on par for complete remission during this next month of the induction phase!
PRAYER: Harvey's leukemic cells continue to dye off at the rapid rate they'd been going so far. That his little body will be able to tolerate this harsh phase of treatment. That his low immune system from chemo will not be compromised with any infections.
Nasogastric (NG) tube
Harvey has many medications to take by mouth. They are so sweet tasting, and so foreign from anything he's used to; he started to refuse them. As a result, we had to insert an NG tube that runs from his nose, down his esophagus, and into his stomach. This procedure is done while he is awake, and usually takes less than a minute. It's certainly not comfortable, and hard to watch happen, but once it's in children get used to it pretty quickly.
We all (Harvey, mom, dad, nurses) had a traumatic experience with the NG tube when it went down into his lungs instead of down his esophagus. Holding your child as they vomit, gasp for air, try to cry, and shake, while knowing something didn't go right was by far the worse thing we have had to go through. They couldn't remove the tube until an x-ray confirmed it's placement. How do you tell your child, "it's going to be okay," when all this is happening? What a relief to finally get the tube back out and let him breath normally. The tough part wasn't over yet, as the tube HAD to go back in, hopefully with better success. I don't know how nurses do their jobs, but our nurse confidently placed it the second time with ease and minimal crying from Harvey.
PRAISE: The NG tube went in successfully the second time. We will now be able to administer all of his meds without the fight of him refusing to take them.
PRAYER: Praying Harvey will not have a lasting memory of the tube being incorrectly inserted into his lungs. He wants his tube out and he can feel it in his nose, throat and says it "pokes" his stomach. He cries when we push the meds through the tube, and we think this is because he can feel the sensation of the medication running through the line. Hopefully these sensations will go away soon and he won't be bothered by it.
Harv will start loosing all of his hair in the next few weeks. He will most likely gain a good amount of weight and his face will get very chubby from his steroid, a.k.a "DEX". We have been warned that he will probably "eat us out of the house" with how hungry the steroid makes him. He will have extreme mood swings and emotions and act in ways that aren't typical of his normal sweet, mellow, playful demeanor. He will also be wearing his NG tube that goes through his nose until his is able to take his meds orally. We don't know when/if he will decide to take them by mouth.
PRAYER: As parents, we will need patience, understanding, and strength as we navigate the behavioral and temperament changes of our boy that's caused by the steroids. Our 2 year old daughter, June, will also be effected by the one-on-one attention we are giving Harvey and will witness his outbursts from the medication. Prayer for our parenting and guidance as we establish healthy boundaries for behavior in the home. Time for us to give June some undivided attention. Opportunities for Stu and I to go on a date and recharge. An appetite or willingness with Harvey to eat healthy foods, as the steroids usually make kids crave "junk."
Recap So Far
Harvey has leukemia (B-cell ALL), the most common childhood cancer and highly curable. His treatment will span the next 3+ years, with this first month induction phase being the most intense, as it's goal is to completely kill off all leukemia cells and keep it that way for the rest of his life. He will continue chemo for the next few years to make sure every last hidden leukemia cell is killed. If he remains in remission for 5 years after diagnosis, he will be considered "cured." Harvey is now 3.5 years old and will most likely be 7 when his treatment is done, and 9 when we can consider him cured. I speak optimistically, knowing that we have a mighty God on our side fighting Harvey's battle, and years of science leading up to these incredible cure rates.
If God can hold the world, he can hold this moment and the road ahead. I am overwhelmed with emotion when I contemplate the ways God will be glorified through Harvey's leukemia journey and how we have already seen him in every step of this diagnosis. I am blessed to be his mother, the one guiding him, caring for him, praying for him, and holding his hand through it all, along with his father. And for all of you - our family and friends - we link arms with you, with love and appreciation, for the generous abundance of support and prayer we are receiving.