Clinic Visit

Today we took Elliot for his first outpatient visit. It was a "labs only" visit. Since being diagnosed his platelet count and hemoglobin (Hgb) have been low. When we were admitted his Hgb was 8.3 and his platelet count was 18 (normal Hgb value is 10.5 - 13.5 and normal platelet count is 140-440). Initially this was because his leukemia cells "crowd out" the good cells. The chemo can also destroy these "good" cells. To treat this, over the course of his hospitalization he received 3 platelet transfusions and 2 packed red blood cell transfusions (he got one of each on Tuesday when we were discharged). We are thankful to report that both values were good today. His Hgb was 12.9 and his platelets were 126.

Elliot hasn't been feeling well for the past two days, perhaps due to the medication/chemo. Our next appointment is Tuesday for a dose of chemo. Thanks for your prayers.

2 Corinthians 1:11 You also must help us by prayer, so that many will give thanks on our behalf for the blessing granted to us through the prayers of many.

Grateful to God

The past two weeks have probably been the most difficult of our lives, and we have shed many tears. Hearing that “your son has cancer” has a way rattling you to the core. We still can’t believe it at times but are thankful for God’s grace to get through each and every day. Through all of this, we have been incredibly blessed and awed at the outpouring of love we have received from our church, family, and friends! It would be impossible to list everyone personally, but people have visited us, called us, texted us, emailed us encouraging verses/quotes, taken pictures for us, brought us meals, books, clothes, pajamas and toys, babysat Addie, cleaned our house, etc…the list goes on and on. Thank you!!! We also appreciate all the prayers on our behalf.

God has been faithful to us thus far, and we are trusting Him to get us through this journey. We take comfort in the fact that God knew Elliot before he was born and has a plan for him. Psalm 139 talks about how God knows our frame. We rest in that He knows Elliot’s frame and every little cancer cell that is in his body and is in control. It hit us after a couple of days, that this trial was as much for us as it was for Elliot. We pray that we will be faithful in this trial, and thanks to everyone who is going on this journey alongside of us!

2 Corinthians 12: 9-10: But he said to me, "My grace is sufficient for you, for my power is made perfect in weaknes." Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.

Treatment Summary / Plan

When we originally came in, the pediatric oncologist we talked to told us that they (doctors) had learned a lot in the past 30 years on how to treat leukemia and that this was not a “doom and gloom” diagnosis anymore. Based on the established criteria, Elliot is classified as standard risk pre-B Acute Lymphoblastic Leukemia (ALL). With this type they claim a cure rate of 90%. The total treatment plan is 3 years. The first six months are supposed to be the toughest. Over the course of his treatment we were told to plan on 3-4 more inpatient hospitalizations for a type of chemo he needs to receive, but they attempt to do as much of it as possible on an outpatient basis. He most likely will have unplanned hospital admissions if he develops an infection due to being immune-suppressed.

The treatment is broken up into a few phases. The first is called induction. This lasts for about a month. He will get a total of 4 different types of chemo during this phase, as well as being on steroids. The goal is to put him in remission by the end of this phase. On the 29th day of treatment he will have another bone marrow biopsy and lumbar puncture, which will help them see how effective the treatment has been. He will require weekly lab work at the clinic. This will be done by finger stick most of the time due to infection risk associated with accessing his port.

One of the values we will keep track of is his AGC, absolute granulocyte count (also called ANC or absolute neutrophil count). This value tells us his ability to fight infection. Normally, in healthy people this value will be above 2000. When it gets under 500 he is more susceptible to infections, but they get very concerned if it gets to zero. His when we were discharged was 300.

Hospitalization Summary

We have finally made it home from the hospital! The past 9 days have been very busy. After getting up to the Pediatric Hematology/Oncology unit on Sunday night they started an IV on Elliot then he received a platelet transfusion. On Monday he received a transfusion of packed red blood cells. Later on Monday the lab results came back with the type of leukemia—Acute Lymphoblastic Leukemia. On Tuesday morning Elliot went to the OR and had a port placed, got a bone marrow biopsy, had a lumbar puncture, and received his first dose of chemo in the spinal fluid. He was pretty lethargic that day. On Thursday he got a dose of PEG chemo, which carries a risk of allergic reaction. He tolerated it well without any sort of allergic reaction, but didn’t feel the greatest. He also received another platelet transfusion.

On Friday, Sat, Sun, and Monday we didn’t have much going on. One of the struggles being in the hospital was that when Elliot felt well he wanted to move around (he doesn’t even care about watching TV). This was particularly difficult with him having an IV hooked up and getting IV fluids. We typically took Elliot on walks around the hospital multiple times a day in a little car they had on the unit. He loved just riding around and exploring the building. We would occasionally go outside to the “healing garden”, a nice outdoor area in the back of the hospital with flowers and a neat floating ball fountain. At one point his IV got caught on the bed and it broke the tubing. Blood began to drip out of his IV. I (dad) clamped off the tubing and the nurses quickly came in and removed the needle accessing his port and placed a new one. This was not a fun experience for him, but we are thankful it was resolved without anything more serious happening (such as his port clotting off).

On Tuesday morning he received another platelet transfusion, and then he went down to radiology and had a lumbar puncture in the morning. Later he received another blood transfusion. And in the evening we were discharged home. We will continue to give him steroids twice a day at home along with zantac (the steroids can cause upset stomach).

Background Story

Many have been curious about how we discovered Elliot had Leukemia. There are a few clues that make sense of it in retrospect and a few factors that prompted us to take Elliot to the ER to be evaluated, but when we look back we can only say it was God's grace that caused the disease to be caught when it was.

The first clue is that for a few weeks Elliot had some type of rash on his chest. It wasn't very pronounced, so we thought it was due to heat rash. The second clue was an unexplained silver dollar sized bruise that appeared on the the inside of his arm on Thursday, April 14. We talked about how he could have gotten it, but never got concerned because, like any 21 month old, he tends to fall and/or hurt himself frequently.

On Saturday, April 16, Elliot woke up with a fever and was lethargic. Melissa noticed that his rash seemed to have spread over his body. When I got home from work I mentioned to Melissa that this rash looked like petechiae. I wasn't sure because it was still not very pronounced. Unknown to me, Melissa's mother told her the same thing earlier in the day. Melissa then began to look up petechiae on the internet and at one point even said "what if he has leukemia?" I dismissed the idea as unnecessary worry.

The next day, Sunday, April 17, Elliot still had a fever. Melissa called me at work and told me she was still concerned. I told her to call the pediatrician and set up an appointment for Monday. She told me about more research she had done on the internet and how she wanted to take Elliot to be evaluated somewhere today. She called the pediatrician and the nurse told her that if we suspected petechiae that we need to take him to the ER immediately. Melissa called me back and told me what she was told and I told her to come in and I would meet her. I honestly thought it was nothing to be worried about, and that taking him to the ER would be good to show nothing serious was going on.

When she got to the ER I came down and met her. I talked to the ER physician who agreed that the rash on his body did look petechial in nature. She listed off a few potential things that could cause it, such as a virus, TTP, ITP, etc. She said they would have a better idea what was going on after they drew some labs. Melissa asked her point blank, "could this be leukemia?" She responded that we would know when we got the labs back. Needless to say, her response was not the quick dismissal that we were hoping for.

About an hour later Melissa called me (I had gone back upstairs to work), and said that they had concerning lab results they wanted to share with us. I came down to the ER and the physician came in and said, “your son has leukemia.”



Psalm 139: 14-16 "I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them."

This is Elliot after he got his IV placed in the room on that first night.