Day at the Children's Cancer Center

Our good friend Molly spent the morning with us on one of our weekly visits to the cancer center and photographed the experience. She shares those photographs on her website in a post called elliot goes to the hospital.

Thanks Molly!

Beginning of Maintenance

The end of Delayed Intensification II was tough. Elliot’s was severely neutropenic (ANC of zero) and his other blood counts were low as well. He had to get a few transfusions of blood and platelets. Then on Thursday 4/4, he spiked a fever and was admitted to the hospital. They did the routine treatment—blood cultures, IV antibiotics, IV fluids. His fever was gone by the next day, but his counts remained low so they wanted to keep him. He ended up getting a unit of blood on Saturday 4/6, and they let him go home on Monday.

His counts remained low for several weeks, so we were delayed in starting Maintenance. On 4/25 we began Maintenance with a lumbar puncture with spinal chemo, IV chemo, and we started on a daily regime of oral chemo. We have been told that maintenance will be better—and it is, but it’s still no piece of cake. Elliot will still get a lumbar puncture each month and 5 days each month he will be on steroids.

In between the steroids and the lumbar puncture has been better though. He will only get his port accessed monthly and his counts have been staying up. We go in each week to check his counts, but the visits to the cancer center have been quicker. His appetite has been poor for the past few weeks, but other than that he seems to be feeling fine. Next Wednesday we go back in for another lumbar puncture and repeat the process again.

We are thankful that we have gotten to this stage of treatment. It’s been nice having Elliot’s counts up, so we can take him places and do things. Our entire family attended our small church group meeting last week for the first time in a year.

Day 39 of 57 during Delayed Intensification II

We are finally in the last phase before maintenance! Maintenance lasts for about two years, but is supposed to be less intense and easier than the different phases of the first year.  So right now, maintenance is the “new beginning” that we are looking forward to, which is in 18 days!!! Hopefully we won’t be too disappointed with how maintenance plays out.

We have had a few periods of Elliot’s counts being high enough to get out the last few weeks, so we have tried to take advantage of these opportunities.

We finished up Interim Maintenance II and only had a one week delay because of his low counts before starting Delayed Intensification II. The beginning of this phase started with 7 days of steroids, 7 days off and then another 7 days of steroids. The first round wasn’t too bad, but the second round of steroids was tough. He was miserable—restless, irritable, hungry and sleepless. Then it takes about 4-7 days before the effects of the steroids wear off. We are so thankful to have that part complete! We just started the second half of this phase last Tuesday (3/17) with an all day hospital stay for chemo after getting a lumbar puncture (LP) and chemo in the office. The tough part about the second half of this phase is that he gets two 4 day rounds of Ara-c (another type of chemo). They give it to him IV in the hospital/office, but then we have to give it as a shot at home (for 3 days following the IV dose in the office). The first few times he cried when he saw the needle coming, but got more used to it….handles it pretty well. These (along with the other chemo drugs) make his counts drop really low, so the next few weeks will be busy and tough.

Then this past Tuesday, in the office he had an LP, spinal chemo, and the Ara-c (IV chemo). His counts were already dropping from the chemo this past week, so his doctor wanted to give him platelets before the LP. We got a little scare when he had a reaction to the platelets about ¾ of the way through the bag—broke out into hives all over and his lips started swelling (in spite of getting benadryl before the transfusion). They stopped the platelet infusion, gave him more benadryl, solumedrol (steroid), and zantac. We are thankful we were able to still get everything done (LP and two types of chemo). They kept us there for a while to make sure the reaction cleared up before we went home, so other than a scare and a delay, everything is still on track.

Once again, a big thank you to all our friends, family, church, and prayer warriors. We feel so blessed!

"This world is our home: we are made to live here. It has been devastated by sin, but God plans to put it right...we can love this world because it is God's, and it will be healed becoming at last what God intended from the beginning."

–quote from Paul Marshall in Randy Alcorn’s book, Heaven, pg 85

One of his favorite things to do, especially during this phase when he doesn't feel very well, is ride his 4 wheeler.

Feeding bird on trip to Riverbanks Zoo, one of our outings we took to take advantage of his counts being up

Day 39 of 57 during Interim Maintenance II

This phase has gone well so far. Elliot  has been getting escalating doses of Methotrexate every 10 days in the office (along with another chemo drug Vincristine). He also received two lumbar punctures (LP) with intrathecal Methotrexate (this last one was his 14^th LP out of 27 total that he will get during the entire course of treatment, so he’s hit the half-way point!). The Methotrexate will reduce his blood counts, but it doesn’t right away. We are expecting his counts to be quite low the next several weeks.

Since his blood counts have been high, we traveled to Delaware and Pennsylvania to visit our families (Dave’s in Delaware and Melissa’s in Pennsylvania) in between his second and third doses. We actually came in to the office early for his second dose, so we had two weeks in between office visits. That is the longest we have been between visits! The doctors gave us a travel sheet that included his diagnosis, latest lab work, and a treatment protocol in case he got sick while we were away. Thankfully, he did well and did not get sick or develop a fever the entire time. He (and the rest of us) had a great time visiting family (a few pictures from trip below), and it was nice to have a little “normalcy” for a couple weeks!

His tastes have been funny the last few weeks. He is obsessed with popcorn, black bean and cheese quesadillas, and smoothies that Melissa makes with fruit and yogurt in the blender. But that's about all he will eat. He's had a few days where he's been nauseous and thrown up a couple times, but for the most part, he's felt pretty good. 


His blood counts were lower on last week’s office visit but still haven’t bottomed out yet. Now we are placing him on “neutropenic precautions” and limiting his exposure to crowds to protect him from getting sick. We go back the clinic Monday (day 41) for his last doses of chemo on this phase. The final two weeks are recovery time before beginning the next phase (Delayed Intensification II). 


Here's a few pictures from our trip...

Elliot playing on iPad with Pop-Pop (Dave's dad)

Elliot with Great-Granddad (Dave's 95 year-old grandfather)

Elliot and Addie with cousins Kayla, Alaina and Nathaniel

Merry Christmas

photo courtesy of Molly Flanagan

Elliot was discharged from the hospital on Thanksgiving evening. He came home with his port accessed and we continued his IV antibiotics for 8 more days (once a day). His counts were still low the next two weeks for his office visits, so we just started the next phase, Interim Maintenance II, on Tuesday, December 13^th.  He has to repeat Interim Maintenance and also Delayed Intensification because he was moved to the high risk category because of his high Minimal Residual Disease (MRD) test on the 29^th day of treatment. Otherwise, he would already be in Maintenance now.  

This phase started out with a lumbar puncture, intrathecal chemo (given in spinal fluid), and two types of IV chemo. Then we came back the next day for another type of IV chemo. He has been feeling well for the past few weeks and has been happily playing. It has been so nice to have our happy boy back! It’s also been great to have his counts up so that he can get out of the house. All the chemo during this phase is scheduled for outpatient, so hopefully we will stay out of the hospital for a while.

We hope you all have a very merry Christmas!

“For unto us a child is born, to us a son is given; and the government shall be upon his shoulder, and his name shall be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace.” Isaiah 9:6

Day 51 of 57 during Delayed Intensification One

Last Wednesday Elliot got a transfusion of blood and platelets and then was discharged home that evening. Then he wasn't feeling well on Monday and spiked a fever again on Monday evening. Since he has very few white blood cells (his WBC level was 600 on Monday night), his body has no way of fighting bacterial infections. Melissa took him to the hospital around dinner time Monday, and they drew labs and started him on IV antibiotics right away just in case the fever was caused from bacteria. His platelets were very low, so he received a platelet transfusion that night. This morning the doctor told us that his blood culture came back postive for bacteria. The doctor thinks it is possibly a contaminant, but he needs to be treated fully in case it isn't. Thankfully he has been on IV antibiotics since Monday night and seems to be doing well (although as of last night, he was still running a low fever), but he will need to be on them for a full 10 days. Tomorrow they should know the specific organism from the culture which could affect his antibiotic regimen. They are trying to set up home health for us to be able to give the IV antibiotics at home. If he stays fever free we could/might get to go home tomorrow. He seems to be feeling well today, but his WBC level dropped to only 400 this morning. Please pray for God's protection for our little man especially during this time when his counts are "precariously low"!

Day 43 of 57 during Delayed Intensification One

So sorry for the long delay in blog posting. The last few weeks have been very busy with clinic visits, steroids (and a steroid stricken toddler), and chemo. This phase has really hit his blood counts hard resulting in us being house-bound most of the time. We are very thankful for family and friends who take Addie out!

The first few weeks of this phase included two 7 day rounds of steroids. This is the first time we have had them since the first phase (Induction), and thankfully he didn’t have to have them as long as last time (although the dose was a lot higher). The steroids made him very hungry, grumpy, and unable to sleep well – just plain miserable. We were all very glad to be done with these for a few months!

We had one quick planned hospitalization (one night) on day 29 for chemo. He was admitted because of the need to hydrate him adequately before giving it. This went well, and he was discharged the next morning.

We’ve also done two rounds of the chemo drug Ara-C. Many of the doses we had to give at home by shot (on the days we were not in the office where he could get it IV). This drug drops all of his counts (white blood cells and red blood cells). Friday we gave the last dose at home and then had a clinic visit to check his labs. His hemoglobin (Hgb) was 7.3 (it was 13.4 the week before) and his platelets were 17,000 (they were over 300,000 the week before), so he received transfusions for both. This was done in the hospital because they couldn’t finish them before the office closed. His white blood cell count was 200 and his AGC was zero.

Elliot was admitted to the hospital on Sunday with a 101 temperature under his arm and is still there. He was started up on IV antibiotics and they drew blood cultures. Thankfully his cultures have been negative so far. His IgG level was low, so they gave him IVIG yesterday. Last time he got this he had a reaction and they stopped it before it finished. This time they pre-medicated him with Tylenol, Solumedrol (steroid), and Benedryl, and he tolerated it fine without any complications.

We are expecting for him to need more blood transfusions tomorrow. We are hoping to be discharged from the hospital on Thursday. His counts will still be low for the next several weeks, so he will have to be readmitted if he gets any fever. He usually likes the hospital, but he is getting a little sick of it this time around.

Thank you for your continued prayers!