Day 87: Not So Good Week

Day 82: Only one treatment last week, but it was a long one

Though he only had one chemotherapy treatment, this past week was a little rough for Elliott. It usually takes a few days for the chemo to finally catch up to him. This time, however, the previous two weeks of 4 chemo treatments each all seem to have hit him all at once. He has been cranky and irritable all week. Elliott has never been much of a crier, but recently he has been having hysterical fits and we have had no way of knowing what is wrong or how to help him. He wanted to be held all the time last week and would not let us put him down, even when he was asleep. The entire week Kyllan and I traded off and stayed up with him throughout the night. (Kyllan probably took a few more turns than me.) Saturday he finally let us put him in his crib, but I think that was just because he was exhausted. He had a much better Sunday and we are hoping that he is in better spirits come Monday morning.

That isn't to say there haven't been any smiles this past week. All this baby holding in the middle of the night, while everyone else was asleep, made for some good bonding time. Actually, Elliott disliked being held before his diagnosis. Laurel was big on cuddling, and still is, so Kyllan was little down about the fact that Elliott would never cuddle with her. An exhausted Kyllan was beaming ear to ear all week with Elliott laying on her.

Just one treatment this week.

Day 86: Elliott helps me grade exams. I am holding him because he would scream hysterically whenever I would put him down. The jury is still out on him being right or left handed.

Day 77: Getting ready for his transfusion

Day 76: Another Good Week

Day 69: One cool baby

Elliott is doing well. He had 4 chemotherapy treatments last week, and has already had his 1st of 4 scheduled sessions for this week. He was a little irritable from the treatments over the weekend, but has started to pep back up. While it is likely he will have a blood transfusion this week, next week is scheduled as a break from treatments.

In a previous post we mentioned possibly taking Elliott to a physical therapist to evaluate his mobility and the fact that he had not started walking.  This past week Elliott had his first visit with a physical therapist that frequently works with pediatric oncology patients. Like we anticipated, the therapist feels that everything is fine with Elliott developmentally, and he is perfectly capable of walking, he just lacks confidence.  This is normal for children Elliott's age when undergoing chemotherapy and we were told to anticipate this during our initial conversations with the oncologists when he was first diagnosed. The induction phase of his treatment left him too weak to even stand, and now he seems scared to attempt a step without someone holding at least one hand. He still has not caught back up to the point he was before his diagnosis. Also, it doesn't help that his big sister knocks him over at least twice a day. He will continue to go to physical therapy to help boost his confidence and we are going to change a few things around the house to help encourage him.

Laurel finally asked about Elliott's hair last week. She wanted to know why it is falling out and how long it will take to grow back. She continues to have difficulty with the concept that someone can be sick for this long, as opposed to a day or two, and that someone can be sick without coughing or sneezing. She has told us on numerous occasions that Elliott is all better and can return to school with her, including this morning. She also wants to know when it will be her turn to go to the doctor.  She seems to think she is missing out on something. 

Day 70: Lego Maniacs

Day 61: Another Quiet Week

Day 58: Elliott enjoying watching a football game with daddy.

Elliott had his only chemotherapy treatment for the week yesterday. The treatment included vincristine, which is the drug that has given him the most issues. It was just the one dose and it may take a few days for us to determine if he is suffering from any side effects. Vincristine is known to cause bone pain, and we believe this was one of the factors that has delayed his walking. It was also the cause of the constipation that resulted in an overnight hospital visit.  One of the more difficult things about Elliott's diagnosis is that he is too young to tell us how he is feeling. We will continue to monitor his mood and behavior this week as we try to figure out if he is in any discomfort.

As of now, Elliott is in great spirits. Though his neutrophils levels have dropped pretty low, which was expected, he still remains energetic and cheerful. He and Laurel have been playing together a lot, to the point that she is no getting a little protective of her toys. She has repeatedly tried to explain to him which toys are girl toys and which toys are boy toys. The problem is that she has declared every toy in the house a girl toy. Laurel may have finely succeed in teaching Elliott how to tickle her. He has been trying it more and more, though Laurel's sudden laughter seems to startle him.

Starting Monday we are back to four treatments a week for the next two weeks.

Day 58: Big smiles all day long


Day 52: A Brief Respite

Day 39: The start of the consolidation phase of his chemotherapy

Day 51: Hair loss since the beginning of consolidation

Elliott had chemotherapy 4 days each week for the past two weeks. Logistically this was a challenge. While Kyllan and I are exhausted, Elliott is a tough kid and seems to have handled it pretty well. Though he has several months of this ongoing phase of chemo ahead of him, he has already had each drug at least once and is showing few negative side effects. Like many chemo drugs, one of his current medicines causes hair loss. He has lost quite a bit during this phase and it is likely getting close to the day I cut what remains off. Don't worry, he is just as cute as ever, and if loss of hair is the worst side effect he experiences we will consider ourselves very fortunate.

We were very concerned that the frequency of treatments these past two weeks would leave him tired and weak. Instead, he continues to regain the strength he lost during the induction phase. He is now climbing the stairs multiple times a day by himself. Recently, he has been doing a lot of pulling up and cruising around furniture. He has even started to push around the his old activity walker. Next, we are waiting for him to start standing up on his power without pulling up on something.

Laurel has really enjoyed playing with Elliott now that his strength is beginning to return.  This includes getting him to crawl/chase after her and elaborate games of playing peek-a-boo. She loves that he laughs uncontrollably when she tickles him. She has even tried to show him how to tickle her, but no luck with that, yet.

This week Elliott has just 1 chemo treatment! We are hoping for a quick appointment and a quiet, boring week. Quiet, boring weeks are severely under rated.

Day 52: A little family time

Day 43: A visit from the the cousins

Cousins

Trying to keep a child with leukemia healthy is not an easy task.  We are constantly washing our hands, try to clean every toy he touches (especially if Laurel plays with it since she is bringing home tons of germs everyday being at daycare), and limiting visitors and outings to decrease exposure to bacteria that can be harmful since he has essentially no immune system to fight off infection.  However, it's nice to see familiar faces, especially family when he is up for it and his white blood cell counts and ANC level are not too terribly low.  So this weekend, my parents, sister and nephews stopped by for a visit.  My oldest nephew turned 10 this past week and my youngest nephew turned 1 this past week as well.   Laurel enjoyed some time to play outside with them while Elliott visited with the adults, but before everyone left, we got a chance to snap a photo of Elliott with his cousins.  My youngest nephew is only 3 and a half months younger than Elliott, so it will be nice when the two of them can run and play together as they get older. 

This next week coming up will be busy as well.  I am out of town at a conference again this week, but fortunately I will be back on Tuesday.  William has a super busy work schedule this week and Elliott has 4 days of chemo this week including another lumbar puncture on Tuesday.  We are very blessed to have William's mom there this week to help with Elliott, his appointments, and Laurel as well.  We anticipate his counts will continue to drop this week and he may start losing a bit of energy again, but so far, he has been full of energy, wanting to play, and moving around quite a bit, so it's great to have days like that.

We again want to thank everyone for the continued thoughts, prayers, cards, phone calls, texts, meals, playdates, and even reading this blog.  We are very grateful and have not been able to respond to each person because it would take hours and we have been consumed trying to keep up with priorities at work and home, but know you are loved and appreciated.  :-)

Day 41: Ups & Downs

Day 39: Climbing the stairs

Elliott continues to gain more and more strength each day. He is smiling and laughing a lot more, and we are seeing much more of his old personality. He has begun to crawl around for several dozen feet at a time. On day 39 he even started trying to climb the stairs in our house again, which was one of his favorite activities before he was diagnosed. There has been more talk about physical therapy to address his muscle loss and reluctance to put weight on his legs, so hopefully he will continue to get more and more mobile.

His new found energy has also meant more play time! Playtime with the kids is something that is so easy to take for granted until it is gone. It has been great to watch Laurel and Kyllan play Elliott this past week, and to get down on the floor with him myself.

Of course with the new phase of his chemotherapy having started this week we are concerned that this new found energy will slowly fade away. Treatment on Tuesday, the eight hour session, was the only day that went smoothly. When we went in Wednesday he spiked a fever which caused the physician to cancel his chemo and and infuse antibiotics instead. Thursday there was concerned about his medi-port and Kyllan spent several hours with him while that was being checked out. Both days caused us a great deal of stress, but everything turned out well in the end. We are still waiting to see if Elliott develops any nausea, the most likely side-effect of the medicine he is now taking. So far so good.

Day 39: Playtime with daddy

Day 39: More playtime

Day 38: Outside with mommy and Laurel

Day 39: Beginning of the Consolidation Phase

Yes... we are still here.  We did not intend to miss blogging this week after getting such great news of remission, but it was a busy week for the Cody household.  This week will be no exception as we enter the consolidation phase.  Since the blood work reveals Elliott is in remission, the goal now is to keep the leukemia cells from returning.  This next phase, consolidation, will be pretty intense beginning on Tuesday with a lumbar puncture, and three new chemo medications.  The lumbar puncture will inject a drug that he has already had before (Methotrexate), he will also begin taking a new oral chemo medication (Mercaptopurine) and also have two infusions, one that will be quick (Cytarabine), and another that will infuse a little longer (Cyclophosphamide/Cytoxin), but have more work involved.  Because this drug, Cytoxin, is so toxic and harsh to the bladder, Elliott will have to receive hydration before and after the infusion, which will mean a very long day.  Fortunately, William's mom will accompany us to the appointment, so William and I will only have to stay a short time and will minimize time away from work.  Wednesday through Friday, he will have to go each day, but for a much shorter period of time to receive just the Cytarabine.  Next week will be four days of chemo again and a lumbar puncture to begin the week, but thankfully no Cytoxin.  He will have lumbar punctures the third and fourth week too, but not the high frequency of office visits.  We will get a break for a couple weeks for his counts to recover and then the process starts again with two weeks of chemo 4 times per week.  So, September and October will be busy.

This past week, Elliott has been a happy kid.  He had more energy to play and move around.  He still has no interest in walking, but did crawl a bit.  He enjoyed some time outside and swinging on the swing set.  I enjoyed seeing him smile so big and bright and even laugh several times.  It was clear he was feeling better.  Hopefully this next phase of chemo doesn't bring him down too much, so that is our prayer for this week, along with prayers for William and I as we try to balance busy work schedules, a demanding chemo schedule for Elliott, and the household ball of energy otherwise known as Laurel.  :-)     

Sorry, but I don't have my photos together, so I will save those for the next post. 

Day 31: Remission!

Day 31: Remission!!

It's official.  We got the results of the bone marrow analysis and Elliott is in remission!!  This is great news and means that he responded well to the first phase of chemo and there were no detectable levels of leukemia in the sample taken, which is the goal of the induction phase. 

We were thrilled to hear this news today, especially after the fever and hospitalization this weekend.  Elliott was at home by midday and when Laurel and I got home, we enjoyed an impromptu "remission party" that William set up.  Elliott loves balloons, so he was smiling and giggling all evening.  It was nice to see him happy and in a good mood. 

Now that he is in remission.  The goal is to continue treatment so the leukemia does not return.  He will start the consolidation phase next week and it's sounds like it's going to be quite intense.  We will get more info later this week, but I pray he will tolerate the next round as well as the first. 

Day 31: Elliott: 1; Cancer: 0

Day 28, Day 29, and Day 30: Big Day, Fever, and Hospitalization #3

What started as an uneventful weekend quickly turned into a pretty eventful weekend.  Friday, Day 28 was the milestone day that marked the end of the Induction Phase.  Elliott did not have to get chemo on Friday and the prednisone is over, but he did have to get a lumbar puncture/bone marrow analysis that will tell us if he is in remission (which I believe they said is defined by less than 5% leukemia cells).  We haven't received the results back, but hope to get them on tomorrow (Monday).  The appointment Friday was pretty smooth.  Elliott was a bit hungry from not being able to eat and was also tired, but tolerated the procedure well.  His lab work showed his hemoglobin (red blood cell count) was a bit low, so we had the option to transfuse blood or wait to see if his red blood cells would recover on their own.  We were leaning towards transfusion, but I think we were both tired and needed to get work done, so we opted to wait until Monday and see if perhaps he could recover on his own. 

Day 29: Life outside the bubble.  Yes, he really did eat a full plate of chicken and french fries.  Thank goodness we are done with the Prednisone. :-)

Saturday, we opted to go out for a late lunch during an off peak time to give Elliott a change of scenery and make sure he had a chance to get out of the bubble (aka.. house).  He seemed to enjoy being out for a change.  When we got back to the house, my sister and nephews stopped by for a visit.  That night as we were putting Elliott to bed, we noticed he was a bit warm.  He felt warm to me earlier in the day, but I figured since it we had him out and about, perhaps he was just warm from the hot summer day.  Unfortunately, he had a fever of 101.  In the leukemia world, a fever of 101 = emergency = call the oncologist and prepare to be admitted to the hospital.  Sure enough, the oncologist told us to pack up and head on in to the oncology unit.  William took Elliott to the hospital while I got Laurel ready for bed and actually put her in the bed.  I then realized I was going to want to head to the hospital first thing in the morning to be there when our oncologist made rounds, so my mom happily agreed for me to drop Laurel off at her house. 

Day 30: Feeling a little better after his transfusion.  What a difference blood makes.  Donate blood!

When they arrived at the hospital, Elliott's temp was 101.6 and his hemoglobin had dropped to 6.2.  Anything below 7 would warrant a blood transfusion in Elliott's case.  He was immediately started on antibiotics and later got a blood transfusion.  Apparently he was pretty restless as well, so I relieved William first thing in the morning, so he could come home and get some rest and also get work done.   Fortunately, the blood transfusion did allow him to pick up some energy.  He enjoyed playing with my phone and one of the ABC apps and then had some fun playing with the IV cords (until I had to put a stop to that one).  

Elliott is still in the hospital tonight, but should hopefully go home tomorrow as long as his lab work and blood cultures come back normal in the morning.  Fortunately William's mom came in town today, so we have an extra set of helping hands.  My mom was with Elliott all last week and has taken Laurel during all the unscheduled hospitalizations.  Sarah, a family friend was with him before that and through the constipation drama when I was out of town.  The support from family and friends has truly been incredible.  I don't take that for granted because many people are not blessed to have the support we do.

I am at home tonight with Laurel.  Her first day of preschool 1 (preschool for 3 year olds) is tomorrow and this will be her first day wearing her uniform (unicorn as she calls it), so I wanted to be here to get her ready and take the obligatory "first day of school" photo.

Well... I need to get rest, but wanted to provide an update.  Thanks for the continued prayers.  Today's prayer is that Elliott's lab work comes back normal, he gets to come home, Laurel has a good first day, and our family, friends, and co-workers know how much we love and appreciate them.   


Day 27: Gearing up for the big day

So tomorrow, Friday, is one of the milestone days we have been preparing for since hearing about Elliott's diagnosis. Tomorrow, Elliott has a lumbar puncture and bone marrow analysis to determine how effective the chemotherapy treatment has been.  The goal is for the results to show his leukemia is in remission.  I know it seems early to say remission, but the ultimate goal of the induction phase (Days 1-28) is to achieve remission.  Regardless of the outcome, he will still have to continue chemotherapy treatment, but it will help to determine the path for the next phase of treatment, the consolidation phase.  We will likely not get the results until tomorrow afternoon or even Monday, so we will be anxiously awaiting to hear back.

Lego time!

Elliott will be sedated for the lumbar puncture, so he will likely be sleepy most of the afternoon (at least that is what has happened in the past).  Since he is getting sedation, he won't be able to eat when he wakes up in the morning until after his procedure is over, so let's hope he doesn't get too upset about that.  The prednisone (steroid he is taking) didn't seem to affect his appetite or weight in the first few weeks, but all the sudden over the past week, he has put on so much weight and his appetite picked up quite a bit.  I will definitely make sure we have a ton of snacks ready for after the procedure.  :-)

The good news is that he has no chemo tomorrow, so perhaps his energy level will continue to climb and he'll be in the mood to play this weekend.  Laurel and Elliott did play with Duplo blocks for a little while yesterday.  He seemed to enjoy that, so it would be great to see more smiles out of him this weekend.

Stay tuned...

Day 26: Bye Bye Curly Locks

Day 26: Still has a lot of hair, but it's definitely falling out. 

One of my favorite traits about Elliott is his super curly hair.  He has had a head full of hair since he was born, although it was actually bone straight at birth.  However, that is all about to change now that he is experiencing one of the evil side effects of chemotherapy treatment...hair loss.  He has so much hair, that it was a bit hard in the beginning to notice that he was losing any.  However, the hair loss is becoming much more pronounced now.  Each morning when he wakes up, there are curly locks of hair all over his crib, and we find ourselves constantly picking up hair shed on his clothing.  It is certainly catching him off guard at times too.  He would frequently twirl his tiny fingers in his hair and still does, so he often pulls out several strands of hair.  He then holds it out in his hand and looks at us as if to say, "look... my hair, why is it coming out?"  Each time he does it, I tell him, no big deal, it will grow back. 

Hat Collection

I feel confident that it will grow back quickly once the chemo treatments end, but I have to admit that it was one of my favorite things about Elliott.  I felt his hair gave him so much personality.  Everyone always commented on how much hair he had and we even had the occasional, "oh what a cute little girl" comment because they saw all the hair and assumed he must be a girl.  William had been threatening to cut it for a while before his diagnosis, but I kept brushing him off.  I am glad I did because I got to enjoy his hair a while longer. 

Now we are gathering a collection of hats for him.  He looked a bit silly before with his curly fro sticking out all sides, but now it will be much more tame.  A few friends and family members sent Elliott hats, and William has enjoyed adding hats for his two favorite teams, the Jacksonville Jaguars and the Florida State Seminoles.  I guess I need to get him a Dallas Cowboys hat.  William will say I am a fair weather fan, and while it's true I don't follow them as intensely as I did in high school, I am still a fan. 

Ready for the Jaguar season.  (please let it be better than the last one)

Day 25: Soaring through the induction phase

It's hard to believe we are already 25 days into treatment and just days away from the end of induction.  Elliott continues to respond well and appears to be picking up energy as the days go by. 

Laurel enjoying a play date

Meanwhile, life goes on in the Cody household.  Laurel starts preschool next week and starts wearing a uniform, ("unicorn" as she calls it), to school next week.  She seems excited about her unicorn.  :-)   Her vocabulary and language skills seem to expand daily and her imagination is very vivid, so she is beginning to enjoy pretend play more and begin entertaining herself more often than she was a few weeks ago.  She has been enjoying more play dates with friends, which is helping to keep her occupied and not notice our lifestyle change as much. 

William is busy trying to wrap up his summer research projects and get prepared for the fall semester which is rapidly approaching.  I am also trying to stay caught up with work and simultaneously with housework as well.  Both of us have been pretty exhausted lately, but the support from family and friends has been great.

Day 24: Crawl before you can walk

A few minutes later Elliott broke the remote. It was wroth it to see him actually interested in playing with something.

Elliott had chemo this past Friday and has been a little cranky and irritable all weekend. His energy level has dropped, again, but his appetite continues to increase. He has actually gained a few pounds, but still weighs less than when he was first admitted to the hospital almost a month ago. His cell counts continue to look good, which is encouraging heading into the bone marrow analysis scheduled for this coming Friday.

While speaking with the physician on Friday I mentioned that I have only seen Elliott stand under his own power once since his diagnosis. That first day they told us a lot of his milestones would be delayed during treatment, but that he would catch up afterwards. Elliott appeared to be just days away from walking before developing what we now know where complications from the leukemia, but has shown little interest in any mobility since. In fact, other than his playdate with Laurel in the hospital a few weeks ago I haven't seen him crawl more than 1 foot. It is hard to tell if it is his low energy level or if the vincristine is causing him some bone pain. It may also be that a few unnamed people are having a little too much trouble putting him down. This week we are going to try to encourage him to crawl a little bit more.

Day 21: Mommy's Home!

I can't tell who is more happy to see who

Kyllan returned from her business trip Thursday afternoon. Elliott's face lit up as soon as he saw her come through the door. Going on the trip as planned was a good decision. Elliott's stay in the hospital on Monday went just as planned. He was in and out in less than 18 hours with no complications. I had a rougher night than he did. Even so, I cannot imagine how hard not being here was for Kyllan. She dropped her bags as soon as she saw Elliott and did not put him down until his bedtime.

Elliott's constipation issue appears to be completely resolved. He has not had many side effects from the chemo, but now that we know this is a concern the physicians have a new plan to prevent the problem in the future. Also, Kyllan and I have both agreed to follow some early advice we received, and ignored, and pack emergency overnight bags for our cars. This way we will be prepared for unplanned trips to the hospital. 

Thursday was a great day for Elliott. Kyllan, who missed two good days while out of town, even remarked that he was the happiest she had seen him since he was diagnosed. His appetite has really picked up and he is eating more and more each day. We are finally starting to see some of the infamous cravings caused by prednisone. His energy level was much higher today than it has been these past few weeks. His activity slowly tapered off today, versus the sudden drop off he has shown in the past. Elliott is scheduled for another chemotherapy infusion on Friday morning. Like last time this will be an outpatient procedure. We may get another day or two our happy and playful Elliott before he starts feeling crumby again. We have another week before the bone marrow analysis tells us how successful the chemotherapy has been.

Day 19: Back Home

I knew he would like the swing once he started feeling better.

Tuesday Morning started out rough, but ended on a high note.

Elliott was discharged from the hospital and we were back home by noon. After lunch and a nap his energy level picked up. He crawled around a bit, played with some toys, and gave lots of big smiles. When big sister Laurel came home from daycare and went outside to play on the swing set he wanted to go too! He tired himself out quickly, but for a few moments he seemed to really enjoy himself. It may have started in a hospital, but today was one of his best days since starting chemo! I hope to see him gain a little bit more energy as he gets further and further from his last chemo treatment. This would give him two more really good days before the next chemo treatment wears him out again. It is really encouraging to see a little peek of the of the old Elliott and to know that there still is a happy little boy in there somewhere.

Laurel loved that Elliott joined her outside.

Day 18: Unscheduled Doctors Appointment #1, Hospital Admission #2

Feeling much better and resting in the hospital after a rough day

Elliott had a bit of a rough day, but is doing much better and in good spirits.

I am going to spare you many of the details, but Elliott has been dealing with some constipation issues. Monday morning marked 8 days since his last bowel movement. One of the chemotherapy drugs Elliott is on, vincristine, is known to cause constipation. This possibility, and the scenarios that could follow, were discussed on day one of his treatment. This past Friday, before his chemotherapy infusion, he had a physical exam and it was determined that while we were right to be concerned about the constipation, it was not yet time to worry. We were to keep a look out for some specific signs and it was recommended that we try a specific over-the-counter medication.

This morning it became time to worry and I called the doctor's office. Again, sparing you the details of my son's bowel movements, some recommendations were given. Things improved, but not enough. Ultimately, I was asked to bring Elliott in to the doctor's office. An x-ray revealed that his constipation had not reached the level of medical emergency, but that it was extensive. Elliott's doctor presented me with two options: 1) Take Elliott home and attempt to resolve the problem with additional over-the-counter remedies or 2) Have Elliott admitted to the hospital were the oncology medical team could resolve the issue quickly, but requiring us to stay over night. Having seen the x-ray, and having watched Elliott's level of discomfort increase with each hour, Kyllan and I wanted to be proactive about the situation and had him admitted to the hospital. (Everyone that has seen the x-ray has given me a very professional, big-eyed, oh my gosh look. I've gotten a "I heard about that x-ray, poor thing" as well.)

While the decision to have him admitted to the hospital was easy, it was complicated by the fact that Kyllan left on a business trip today. She was literally boarding the plane while we discussed having Elliott admitted to the hospital over the phone. We talked several time about this exact scenario last night and spoke several times this morning as the situation developed. We decided that Kyllan should go on her trip as planned. This was a non-emergency and there was a viable option to take him home and treat him with over-the-counter medicine. This stay in the hospital was foreseen on day one of treatment and admitting him was a preemptive move to resolve the problem before it became an emergency. We decided Kyllan should go her trip as planned today because one day we will be faced with a real emergency and going to work will not be an option.

Today was a reality check. A much needed reality check. When we were discharged after the diagnosis and saying our goodbyes to the nurses, as we walked out they all said things like, "see you later Elliott!" and "see you guys next time." I remember thinking, "no offense guys, but I don't ever want there to be a next time on the pediatric oncology floor." I thought that if we stayed vigilant we could keep Elliott out of the hospital. We didn't even make it a week. (I have received 3 "hi guys, you're back!")  We are slowly accepting that there are going to be a lot of next times.

The nurse just checked on Elliott. He is doing much better and, based on his progress, thinks we will be going home today. Rounds will be in the morning and I hope to have Elliott back home before lunch.

Day 15, 16, 17: First outpatient chemo treatment and weekend at home

Sorry we have been missing on the blog the last few days.  We were trying to take advantage of some time to relax, get some things done around the house, and catch up on work, but we're still here.

Day 15: First Outpatient Clinic Visit: Infusing Daunorubicin

Day 15: Enjoying one of his favorite snacks

Elliott has his first outpatient visit to the oncology clinic for evaluation and chemo treatment.  His bloodwork continues to progress as would be expected with his white blood cell count continuing to decline, which means he is immune system is very weak.  Again, this is what we would anticipate from the treatment, so no surprises there.  The nurse took his vitals and  accessed his Medi-port for the first time since he left the hospital to draw his bloodwork and get the line ready to administer the chemo medications.  They prescribed us some numbing creme to put over the site where his port is accessed to ensure he did not feel any pain, and it does not appear that he did.  After drawing the bloodwork, we visited with the oncologists and asked his our list of questions related to his low energy level and sporadic eating habits.  It sounds like the low energy is something we can expect during this phase a treatment, so we felt a little more assured, but it will be certainly nice to see him pick up a little more energy at some point soon.  We also were prescribed a couple more medications to ensure he is not having issues with nausea, reflux, or constipation, all potential side effects of the chemo.

In addition to the 2 chemo drugs, which only took about 20 minutes to infuse, he got sodium chloride to bring up his sodium levels which were a bit low.  That infusion took about an hour, so we moved over to the pediatric infusion area.  Elliott seemed relaxed through the entire visit and while we didn't utilize any of the electronics in the infusion area, William certainly had his eyes on the X-box and I am sure was already wondering how he can catch up on some of his video game playing when we come in for chemotherapy.  After about 2 1/2 hours at the clinic, we were out the door.

Day 16: Elliott and Grandma (Kyllan's mom)

The rest of the weekend has been much of the same.  Elliott continues to enjoy cuddling with on the couch with either me, William, or Sarah, a family friend from Florida who is helping us care for Elliott during the day while William and I are at work.  She has been a huge help and has become a new play buddy for Laurel as well.  Speaking of Laurel, she is really enjoying her new playset.  She has been enjoying it each day, so it's nice to have something in our backyard so she can enjoy fun times in her own back yard.  Laurel also enjoyed a play date with a friend who's mom is a colleague of William's.  She then spent the rest of the weekend with my parents, so that gave us time to clean up, relax more, and even get in a date night on Saturday, since Sarah was kind enough to stay home with Elliott who was already asleep for the night.  The date night was a nice distraction for William and me. 

We closed out the weekend with transitioning Laurel's toddler bed into a "big girl bed", which she was excited about as well. She made both William and I get in the bed with her to read books, and we were happy to oblige.

This weekend will be another busy week.  I have to travel for work this week, and Elliott has a clinic visit on both Tuesday to check his hemoglobin and Friday for his next round of chemo.  Elliott is beginning to lose his hair as well and we anticipate we will see a good amount disappear this week.  He has quite a bit, so perhaps it may take longer than the average person.  I will miss his curly locks.  They gave him such personality, but hopefully they will return quickly after his treatment is over. 

We appreciate your continued prayers and support!  Elliott has some great prayer warriors out there. :-)

Day 14 of Treatment: Swing Set

The new playset for the backyard

Elliott has been a little lethargic the past two days. He is not crawling around very much. He isn't pulling books off of shelves or digging through his sisters desk, previously two of his favorite activities. He hasn't even tried to climb up a flight of stairs. I am a little down that he is not acting like himself.

Laurel has fun, while Elliott takes in his surroundings

Friday will be his first dose of chemo since we left the hospital. This will be done as an outpatient procedure and should last ~30 minutes. While there I'll be sure to ask about his energy level. Kyllan and I also plan to ask about his weight and appetite. Prednisone is supposed to increase appetite and cause weight gain. It is also infamous for generating road-rage like outburst. Elliott has lost interest in a lot of his favorite foods. Aside from a few spurts here and there, his appetite does not appear to have increased. In fact, he appears to have lost some weight. Also, no outburst here, just frequent napping. I am sure this is all just part of the induction phase, but with Elliott being too young to talk, I get worried that he is trying to communicate things to us that we just aren't picking up on. He doesn't grimace or look sad, so we are not very concerned that he is in pain, but he hasn't looked very happy either.

The big news of the day is that we added a playset to the back yard! This was a gift from my mother. She offered to get one for the kids several times before, but we always declined for various reasons. Elliott is not supposed to go to public parks, but can play on personal playground equipment, so Kyllan and I decided that this was as good of time as any. Laurel was very excited and spent at least an hour playing on it Thursday evening. Elliott did not seem all that interested, but like I discussed earlier, he hasn't been very interested in much of anything the past few days. I think when his energy level picks up he will love it just as much as his sister.  Now I just have to talk Kyllan into letting me put him on the slide!

He'll be excited later...

Day 13 of Treatment: Out with the old, in with the new

Getting home was a huge milestone for us and it is great to have everyone in the same house again!  Although Elliott is responding well to treatment thus far and has made leaps and bounds with his progress, we will have a long road ahead of us.  As I mentioned in a previous post, this first phase, induction, lasts 28 days.  The next phase, consolidation is 6-8 months, and the final the next phase, consolidation, and then the maintenance phase, which last 3 years.  

For right now, we are just focused on the  28 day induction phase.  He will have outpatient chemotherapy for the next few Fridays, he takes oral prednisone and an oral antibiotc at home and labs will be tested again to determine the plan for phase. 

We are adjusting to a new routine for the family, which will be challenging at times, but I think we will quickly adapt to a new normal.  I will go into more of those details in a later post, but right now, I am struggling to keep my eyes open and need rest!

Day 12 of Treatment: Homecoming

At home playing with big sister

After nearly two weeks in the hospital Elliott is now back home!

All things considering, it was actually a pretty quite day. After receiving Tylenol for some discomfit Elliott slept through the rest of the night without incident. Kyllan stayed with Laurel last night and,  in anticipation of rounds, arrived at the hospital pretty early. Elliott napped through the morning.

All played out

During morning rounds the physician told us that Elliott looked great and would be discharged as soon as the paper work was complete.  While that was being done we took a quick tour of the oncology center where Elliott will receive his chemotherapy and the pharmacy where we will pickup his oral medications. When we got back it was time to pack up! For twelve days the hospital was our home. We slept there. We ate there. We experienced some emotional highs and lows. We formed memories that will last a lifetime. And when it was time to go, we didn't bat an eye. We said goodbye to the nurses on duty, including two of Elliott's favorites, and hit the door.

Once home Elliott cuddled with mommy for most of the afternoon. Laurel was very excited to see her little brother when she got home from daycare and immediately set of to find some toys to play with. They literally played until Elliott laid down and fell asleep right there on the mat. He completely wore himself out. Clearly we did not have any trouble getting him down for bed tonight and it does not appear he is experiencing any discomfort.

Several people have asked about ways they can help during Elliott's recovery, so I added a section to the links at the top of the page.