2014 Update

Since it’s been over a year without a post it's definitely time for an update. Elliot continues to do well in Maintenance therapy. He has had a few drops in his ANC (absolute neutrophil count) in the past year, but it has always returned to normal levels quickly. Only once was he admitted to the hospital (back June 2013) for fever with neutropenia (low ANC). It was a quick stay, but he came home on IV antibiotics since he had a positive blood culture. He had his final lumbar puncture in May of 2013. A few months ago his hem/onc practice changed how often they see patients in Maintenance to every other week instead of weekly. Only going in every other week has been a very nice change. We feel like we are in the “home stretch” now since his treatment is due to complete in August of this year.

He started preschool this past fall in the mornings and was doing well and enjoying it. He has also been seeing an occupational therapist once a week to help with his fine motor skills, which were lacking due to all the chemotherapy he has received. We recently pulled him out of school to prevent him from catching anything during the winter/flu season.

Elliot is now a big brother. His sister, Saige, was born on 2/5/14. Addie and Elliot are both very exited about having a little sister. 

Merry Christmas and Happy New Year (late)

Elliot began his 4th cycle of Maintenance last Tuesday. We kicked if off with his 24^th Lumbar Puncture, and 5-day stretch of steroids. It continues to amaze us how his mood changes as soon as he starts steroids. He was excited to get his “white medicine”. He loves to carry an empty syringe around and pretend to inject us with “white medicine” to make us fall asleep. Perhaps, he will be a doctor someday!

Cousin Riley, Elliot, big sister Addie

We've had a busy few months full of travel. In November, we headed north for a week to visit family and attend Dave’s brother’s wedding. On the last night of our trip, Elliot spiked a fever, and we thought we might have to visit the local children’s hospital. Fortunately, we had gone to a local hospital earlier in the week to have his labs checked; since we knew his white blood cell counts were good, his oncologist said we could just bring him to the clinic when we got home. His fever went away after that first night.

His right cheek swollen

A couple days after we arrived home, Elliot began exhibiting symptoms of mumps. One side of his cheek swelled up and was very painful to him. The swelling was caused by a swollen parotid gland (or salivary gland). The swelling lasted three days, and we thought he was over it but then the other side of his check swelled up. He had his oncologists puzzled. The official diagnosis was “viral parotitis” which might or might not have been caused by the mumps virus. Thankfully, this whole mumps scare happened during our one week home in between trips, and it  cleared up by the time we headed to Disney World with Dave’s family.

We enjoyed a trip to Disney World the 1^st week of December. We had a great time except Dave and his dad got the flu the 2^nd day of the trip so they were out of commission. Fortunately, God protected the rest of our family (especially Elliot!), and we were able to avoid visiting the local children’s hospital! 

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