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

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!

Day 2 of 57 during Delayed Intensification One

We were pleasantly surprised to go to the clinic yesterday and find out that Elliot’s counts were up enough to start this next phase. His AGC had to be above 750 and just four days earlier on the previous Thursday it was ZERO. The doctor told us Elliot had a greater than 50% chance of being admitted to the hospital over this past weekend with a fever, but he remained fever-free!! We are thankful to our God for answering our prayers and protecting him. Everyone at the clinic was very doubtful that his AGC would be up enough yesterday to start this next phase, but it was just barely up enough – 765.

The kick-off of this phase was a busy day. We got to the clinic at 7:30, did lab work, the clinic staff accessed his port, gave him zofran (for nauseous from the chemo), and then the pediatric intensivist doctor sedated him. Once he was asleep, a vascular technician from the hospital came over and did an echocardiogram (he had one of these when he was first diagnosed for a baseline). The doctors needed to make sure his heart was still healthy in order to begin this next phase, which it was!. Then he got a lumbar puncture with spinal methotrexate, and 2 different types of IV chemo. Oh, and he got his flu shot :). We certainly don’t need any flu going around our household this year!

We also started him on steroids last night at home. He will be taking steroids for the next 7 days, then a 7 day break, then 7 more days. Steroids hit him very hard last time he was on them, so please pray that he will tolerate them well and that God will give extra grace and patience to mom, dad, and sister. We go back to the clinic on Friday for a different type of IV chemo (PEG).

Psalm 66:19 – “But truly God has listened; he has attended to the voice of my prayer. Blessed be God..."

Day 56 of 64 during Interim Maintenance One

Thank you all for your prayers during this last phase. It has been very busy, but thankfully everyone in our family has remained healthy so the only hospital visits have been for Elliot’s scheduled chemotherapy.

The last 2 months have had 4 four-day hospital admissions for infusion of high-dose Methotrexate, 2 lumbar punctures in the clinic for Methotrexate (this is put directly into the spinal fluid in order to get to the brain), and 4 IV pushes of Vincristine.

For the hospital admissions, we would arrive at the hospital early Tuesday morning and stay until Friday evening. The picture is him hanging out in the playroom at the hospital. Then, we would be home for a week and a half and do it all again the following Tuesday. I felt like I just had time to finish unpacking in order to get repacked again! The first time Elliot received the high-dose Methotrexate in the hospital, he was VERY grouchy and miserable the week following. He also got some mouth sores. We were concerned that this was going to be the case each time he received it. But thankfully, that was the worst time. The other 3 times, he handled it great. The type of chemotherapy he received during this last phase did not wipe out his blood counts (and was not expected to).

It has been wonderful having a bit of “normalcy” in our lives with Elliot’s counts being up the last couple of months. We were able to go to the beach for a couple days, the zoo, the park, the pool, etc. (live like a normal family!). We have a new appreciation for little things like all four of us eating together at Chick-Fil-A (but definitely no play areas for us)!

Elliot’s next phase of chemotherapy will begin on October 4. It has more intense chemotherapy and is expected to wipe his blood counts out again. It kicks off with steroids as well, which we are not looking forward to. In addition, there are several new kinds of chemotherapy that he will be receiving. Please pray that he will not have any adverse reactions to these! We are especially concerned because a little boy just ahead of Elliot in the treatment just went into liver failure from one of the chemotherapy drugs.

"In God I trust; I shall not be afraid." - Psalm 56:11

Day 14 of 64 during Interim Maintenance One

Two weeks ago, Elliot’s counts were high enough to begin Interim Maintenance One (a total of 64 days). This phase kicked off with a lumbar puncture for chemo in his spinal fluid. When they gave him the propofol, he started giggling and laughing when he received the sedation. Not for long of course—he was asleep in a few seconds. After the LP we were admitted to the hospital where they gave him a dose of Vincristine (IV push) and started him up on IV fluids. Tuesday evening they started the high-dose Methotrexate. It infused over 24 hours. Then they continued IV fluids and gave him Leukovorin every 6 hours. This is a “rescue drug” that rescues his normal cells from the effects of the Methotrexate. While giving the Leukovorin they continued to check Methotrexate levels in the blood to ensure it was being eliminated. Thankfully, his body did not have any problems eliminating the Methotrexate and, on Friday (8/5) his level dropped low enough to send him home.

Elliot did not eat well in the hospital and that continued when we went home for about a week. He had some nausea from the chemo and threw up a couple times. In addition, on Sunday after we got home we noticed a couple mouth sores (a common side effect of the Methotrexate). The doctor gave us a prescription (magic mouthwash) that was supposed to help with the mouth sores, but getting a 2 year-old to swish mouthwash is impossible! Fortunately, the mouth sores cleared up on their own, and he has been eating better and feeling better for about 5 days now….just in time to get some more Methotrexate tomorrow :(. Tomorrow, he will be admitted for the 2nd (of 4 in this phase) high-dose Methtrexate. If all goes as planned, will be there from Tuesday morning through Friday evening. It will be another long week in the hospital!

Elliot’s counts were high enough this past Sunday for us to all attend church together. This was the first time we have been to church together and Elliot has been at all since the beginning of April. It was such a blessing to be able to all be together to worship our Savior with our church family! We are so grateful to be part of such a wonderful group of believers.

Delayed start of Interim Maintenance One

Today we went to the clinic to begin the next phase of treatment. We thought for sure that Elliot’s counts would be high enough! Even after the preliminary lab work came back, we were optimistic since his platelets were over 200,000 and white blood cell count over 3,000. However, his AGC (a measurement of specific types of white blood cells) was only 100 (down from 500 last week). His AGC needed to be 750, so they sent us home and told us to come back in a week. The doctor said it is very common for kids to get held back a week or two during this part of the treatment plan. Due to his low AGC (his immunity count), we will be homebound for the week. It’s a little discouraging to have to wait to continue his treatment, but hopefully he’ll continue his good mood from the previous few days since he hasn’t gotten any chemo.

End of Consolidation

Last Friday (7/15) Elliot woke up with a fever of 100.9 so he was admitted to the hospital again. He got the normal workup—IV antibiotics, blood culture, and IV fluids. His hemoglobin was low (6.6) so he received a blood transfusion. He felt miserable on Friday but started feeling better on Saturday. Sunday he had an AGC of zero (normal would be over 2000, special precautions are taken when it gets under 500) and because it was so low the doctor wanted him to get 72 hours of the antibiotic. We were not discharged until Monday. His AGC was only 48 on Monday, so we were told that it wasn’t likely to begin the next phase on Thursday (7/21).

Thursday was a quick appointment at the office. He had labs drawn and they told us that his counts were not high enough to start the next phase. His AGC was up to 500, but it needed to be at 750. His platelets were 63,000, but they needed to be above 75,000. Everything was trending in the right direction, so he just needed more time to recuperate. They gave him a birthday box and we went home. We were actually happy with this because that meant we got to have Elliot’s 2nd birthday at home! We threw together a little family party and celebrated Thursday night. He liked trying to blow out his candles and looking at his cake, but he would not eat any of it. We are so grateful that God has blessed us with Elliot!

The plan is to start the next phase (Interim Maintenance One which lasts 64 days) tomorrow 7/26—assuming his counts are high enough. This phase starts with him getting put to sleep for a lumbar puncture and chemo in the office. Then he will be admitted to the hospital for another type of chemo, high dose Methotrexate. This type of chemo requires lengthy IV fluids before and after administration, and the drug takes 24 hours to infuse. This means a minimum of a 3 night hospitalization. He will get this type of chemo 4 times over the next 8 weeks, which will mean a lot of hospital stays. I think the term “Maintenance” is a little misleading in this phase considering all the hospital stays! At any rate, we are hoping his counts will level out somewhat during this phase enabling Elliot to get out a little more.

This new chemo that he will be getting is known for causing some pretty nasty mouth sores. Elliot is already not eating well (we are assuming because nothing tastes good to him anymore), so please pray that he does not get any of these! He has lost four pounds. He is not wasting away by any means, but is obviously thinner. He seems to latch onto a certain food and eat only that for a few days. This week it is peanut butter and jelly sandwiches – for breakfast, lunch and dinner.

And to end on a positive note, Elliot was in such a great mood all weekend! It was so refreshing to have our happy son back for a few days.

Day 50 of 57 during Consolidation Phase

Today we finished Elliot’s last chemotherapy for the Consolidation phase! One more week of “Consolidation” in order to let his counts recover, and then we start the “Interim Maintenance” phase. Yay! It’s been a busy week for us complete with several trips to the doctor’s office, 1 blood transfusion, and 2 platelet transfusions.

Last Thursday (7/7), Elliot’s labs were very low. His platelets were only 9,000 and his Hemoglobin was 6.4. They tell us this is to be expected from the chemotherapy, and it will probably happen again. It helps to expect it, but it still doesn’t make it any easier! So, originally we went in for routine chemo, but ended being in the clinic the entire day from 9 – 5 in order for him to get platelets, chemo, and blood (in that order). It was one longggg day. We did what we could to keep him occupied (including "pole surfing" -- see video to the right). The doctor wanted to see us again on Monday (7/11), to get his labs checked because they had been so low on Thursday. Sure enough, his platelets were still low. They were a little better (up to 17,000), but still low enough to require a transfusion. We stayed at the clinic until 1 that day. Today his platelets were good – up to 110,000. His hemoglobin was a little low (7.5) and his AGC (his immunity count) was very low-86 (500 is the cutoff for extra precautions, so he is way below the threshold). We are homebound for a while. We will go back Monday to get his labs checked again because of his borderline hemoglobin. We are glad it is less than a 10 minute drive to the hospital!

If Elliot’s counts have recovered by next Thursday (7/21), we will kick off the next phase of treatment with chemo in his spinal fluid (a procedure done in the clinic where they put him to sleep), and then we will be admitted to the hospital for 3-4 nights for a type of high-dose chemo that he hasn’t had yet. His platelets need to be 75,000 and his AGC needs to be 750 to start this phase, so please pray especially that his AGC will come up this week! We would really like to stay on schedule with his treatment. This means that we could be spending Elliot’s 2nd birthday in the hospital. Not exactly what we had planned for our son’s 2nd birthday party! Thankfully, he’s not old enough to realize it, and we will celebrate it later when he’s feeling a little better.

Elliot has been extra grouchy this week, and it has been incredibly draining. Not all the days have been difficult for him but a lot have. It’s hard to know if he’s just being 2 or if he doesn’t feel well. He has had a runny nose and cough, but thankfully he has not spiked a fever. His eating is still very sporadic, and he has lost 3 pounds so far. Praise the Lord that we had a fat baby :)! This week all he wanted to eat was oatmeal and pickles (including drinking the pickle juice out of the jar – gross).

“Cancer is a signpost pointing to something far bigger: the last enemy that you must face. But Christ has defeated this last enemy (I Cor 15). Death is swallowed up in victory. Cancer is merely one of the enemies scouting parties, out on patrol. It has no final power if you are a child of the resurrection, so you can look it in the eye.” David Powlison, Suffering and the Sovereignty of God, page 211

Day 42 of 57 during Consolidation Phase

We are so thankful that God has protected Elliot over the past few weeks. We have all had colds in our family except for Elliot! He has been feeling well. His is walking all over the place now, but he still falls a good bit from being unsteady. He gets frustrated with it sometimes and just wants to be carried, but it is nice to see him walking again.

Another answer to prayer is that on 6/20 his platelets were over 200,000 (up from 60,000 four days earlier). This, and his good AGC, allowed us to continue on track and be admitted for a particular type of chemo on 6/23 (Cyclophosphamide or CPM). It was a one night hospital stay and we were able to leave the next morning. Except for this planned hospitalization we haven’t been in the hospital since the few days on 5/28. This is remarkable considering the low counts he has been running for the past few weeks.

Last week we had what we thought was going to be a quick visit to the doctor’s office, but his hemoglobin came back low (7.4) and he needed a blood transfusion. It took longer waiting on the blood to be ready than to transfuse it. We got to the office at 9 am and didn’t get out until 3 pm.

During this phase we had to start giving Elliot shots at home of a particular type of chemo (ARA-C). We (Dave) gave them 4 days then had 4 days off. Then gave them for 4 days and had 2 weeks off. We just completed another 12 day cycle of that on Sunday. He quickly learned what was coming when Dave got the syringe out and would start crying, but it got better towards the end because we started using numbing cream on his abdomen before the shot. Either way, we are glad we are done with that for a while.

Elliot’s birthday is not until July 22, but since Dave’s parents were in town visiting over the weekend we had a little celebration for him. The picture is when we were trying to get him to blow out the candles on the cake Mom-mom made for him.

Tomorrow we have another doctors visit where Elliot is scheduled to get two types of chemo (PEG and VCR). With the PEG they worry about him getting a reaction. He’s had it a couple of times already and done fine, so we pray that continues.

Day 23 of 57 in Consolidation Phase

We are thankful to report a good week for our family! We are going on almost three weeks out of the hospital! We are surrounded by summer colds right now and really praying/hoping that Elliot avoids it. Dave and Addie both have colds, so we feel like it’s only a matter of time until Elliot gets it too.

Last week (6/9), Elliot’s counts were all great which allowed us to actually take him out places. We feel like whenever his counts are good, we need to do something fun to get him out of the house! So we took him to the pool one day and another day we went and had a family picnic in downtown Greenville and let him and Addie play around in the fountains (see picture). He wasn’t too fond of the water, and preferred to stay put in his stroller (which was okay by us!).

We were making some progress with his walking, but that’s gone backwards a little bit. He gets one type of chemo called Vincristine (VCR) which affects the nerves in your legs, feet, and jaw. The doctors think this is most likely why he can’t walk well. He also has developed some strange jaw quiver which happens occasionally, also most likely from the VCR. He’s had two doses of the VCR the last two weeks, but now he’ll get a break from that type for 3 weeks. Hopefully, the break will give him some time to work on his walking skills!

Yesterday (6/16) Elliot’s counts were all very low which was as expected from the chemo the prior week. His platelets were only 60,000. They need to be 75,000 in order to get his high dosage chemo this next Thursday. We go back on Monday to get his platelets checked. If they are still low, then they will probably give him a transfusion so hopefully they will be high enough to get the chemo on Thursday. This chemo requires an overnight hospital stay as well.

Elliot seems to tolerate the chemo well. Occasionally he gets extra cranky, but it’s hard to know if that’s because he’s almost two or if he doesn’t feel well! His eating is sporadic. Yesterday, all he wanted to eat were pickles and hotdogs. Today, he won’t touch those, but is eating saltines, peanut butter, and some oatmeal. The week before last his eating habits were almost “normal”! He does not like sweets anymore (so won’t touch a cookie) and seems to crave salty foods. Mealtimes are never dull around here trying to find something that tastes tolerable to him! The kitchen counter is usually full of different food choices.

"Weeping may tarry for the night, but joy comes with the morning."
Psalms 30:5

Consolidation Phase Continues

We are thankful that Elliot has been feeling well for the past week and we have been able to stay out of the hospital. He is gradually getting more mobile. He will crawl and scoot around, walk with a walker, but he still does not walk on his own. We were re-assured that this would return over time.

Today was a busy day at the doctor's office. He got another lumbar puncture (LP) with chemo in his spinal fluid, and received 2 other types of chemo IV. We started the LP earlier (9:30) which was nice because he can't eat or drink before it. We had to stay at the office for a while because one of the IV chemo drugs (PEG) takes an hour to infuse and he has to stay an hour afterwards to be sure he doesn't have a reaction. Everything went well. He was a little cranky later today, which we are attributing to his treatments this morning. The following video is at the office during his PEG infusion.