Maintenance - 3rd Cycle

Elliot is now in the 3^rd cycle of Maintenance, and we have reached the half-way point of his overall treatment (end date is still May 2014)! His counts have been high, so we can take him places and function fairly normally. He has had a growth spurt over the last few months, and because of that, his steroid and chemo dose has increased for this 3^rd cycle. The doctors started him back at full chemo dosage at the beginning of this cycle (he had been at about 80% dose for the last few weeks because his counts dropped a little too low during the 2^nd cycle of maintenance).

He generally feels well, except for during and after his steroids, and after his Methotrexate (type of oral chemotherapy) doses. During these times he can be very moody and irritable. Recently, he has been very active. He loves running and riding his Thomas tricycle.

We are thankful for God's protection over him, and would appreciate prayers for his protection from infection during this winter season.

Maintenance - 2nd Cycle

We have been in Maintenance for about 4 months now and are in the 2^nd cycle. Each cycle of Maintenance is 12 weeks long, and consists of daily oral chemotherapy, monthly IV chemotherapy, monthly steroids (for 5 days) and two lumbar punctures with intrathecal chemo (chemo in spinal fluid—given during the LP). We still visit the cancer center weekly for lab work and once a month he gets his port accessed. This course gets repeated for a total of two years.

Elliot has generally been feeling good. We are thankful that he hasn’t been in the hospital since April! His counts have generally been high, so we can take him places and do normal things. We’ve done a few trips to the beach and traveled to Delaware and Pennsylvania to visit family this summer. His hair has grown back and his appetite is good. He has been active in playing with his sister, and recently learned to ride his “Thomas” trike. He still vomits occasionally (he asks for his Zofran every morning), and tells us he feels bad occasionally. The roughest part is the 5 days of steroids each month. These make him irritable and sleepless. Overall though, this has been much better and easier than the first year of treatment.

Two weeks ago his counts were the lowest they have been in Maintenance with an ANC of 341. Thankfully he didn’t catch any infection or spike a fever. We held on giving him any of his chemo drugs for 6 days, and now his counts are coming back up. We are thankful for God’s protection over our boy!

Family trip to Myrtle beach at end of May

Celebrating Elliot's 3rd birthday 

Riding his Thomas Trike

Trip to Hilton Head in August with sister Addie and cousin, Riley

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