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 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 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 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.

Day 11 of Treatment: Successful Surgery

Relaxing with Mommy after surgery

Early this morning Elliott had a planned surgery to remove his central line and to implant a port, also known as a medi-port or portacath. The port is a subcutaneous device that contains a catheter connected to a vein. It will facilitate administration of Elliott's chemo. Unlike the central line, it should also be Laurel proof. The surgery went smoothly. The oncologist, the pediatric surgeon, and several nurses have all commented on how well he responded. He did not appear to be in any pain or discomfort during the day, but I did ask that he be given a little Tylenol this evening, as he kept waking up every 10 minutes or so. He has been asleep since. It has actually been pretty quite around here. I hope the same can be said for the morning.

Thinking about all the toys he is going to play with when he gets home

Kyllan stayed with Elliott last night (Sunday night). She tells me that it was his best night of sleep since he has been in the hospital. It was a completely different story at home with big sister Laurel. We have done a lot of fun things with her over the past week and a half to distract her from the fact that things at home weren't quite the same, but now the jig is up. Last night she cried several times while asking for her mommy and insisting that Elliott was all better and could home that evening. When I told her that Elliott should be well enough to come home Tuesday, she repeatedly asked, "so we will be able to play together, right?" It warmed my heart and broke it at the same time. Kyllan is staying with her tonight and I am with Elliott. At this point I think we are all ready to get out of the hospital. The only reason we did not go home this weekend was so the port could be put in first thing Monday. I hope his recovery from surgery continues to go well so that we can go home Tuesday. I will be so happy to have everyone under one roof again.

Kyllan has mentioned it, but this is the first post I have made in a while. All of your calls, texts, emails, and comments have meant a lot to our family over the past week and a half. The continued love and support of our friends and family has given us strength in our weakest moments and we will forever be grateful that we have so many wonderful people in our lives. Thank you.

Day 9 of Treatment- Lazy Saturday

Saturday was Day 9 of treatment and since it's the weekend, things were quiet, which is great.  Elliott is doing well and doesn't seem to be having any major side effects from the chemo, so hopefully it stays that way.  

William's parents stayed with Elliott this afternoon, which allowed me to run some errands and go home for a little bit to get a break from the hospital.  I was able to get some laundry done, check mail, find a shoebox for Laurel's project at school next week, rearrange some things in Elliott's room, and change out his sheets and changing pad cover so everything is fresh and ready to go when he comes home.  I relaxed for a little while also, but William can tell you that it is hard to get me to sit still.  

My sister took Laurel for the afternoon, so Laurel got a chance to hang out with her cousins.  I know she enjoyed that. 

Day 9: Napping with Bebe


William's parents say Elliott was quiet all afternoon, so I think he enjoyed getting to be lazy and less activity, not to mention a nap on Bebe.  Right now he is napping in my arms while I type this post on the squarespace blog app on my phone.  I have tried to put him down twice and he cried both times and he's been through too much this week for me to feel comfortable letting him cry it out.  Perhaps the third attempt will be a charm?

Day 7 of Treatment: Music Therapy Rocks!

Treatment Day 7: Mommy and Elliott

Day 7, Thursday, was pretty laid back, which was nice because Friday, Day 8, is a critical day.  Not only will Elliott have 2 IV chemo drugs, he will also have a lumbar puncture (while sedated) with a 3rd chemo drug and a bone marrow analysis to see how well the treatment thus far is working, so it will be a long day of treatment for Elliott.  This morning, Elliott was in good spirits and was smiling quite a bit.  He then spent most of the afternoon napping. 

Day 7: Naptime Music Therapy

Just as he was going down for a nap, a singing duo came by the room and ask if they could sing a song for him.  The Cody family loves music, including Elliott, so we agreed.  They sang such a melodious and beautiful song.  It was so calming, Elliott actually fell asleep while they were singing.  Music therapy rocks! (no pun intended). 

Elliott also had a visit from one of his former teachers from the infant room at daycare.  He was in the infant room until about a month ago, so they developed a special bond. 

William and I swapped out again, meaning he is on hospital duty tonight and I am at home with Laurel, so he brought Laurel to the hospital to say hi to Elliott.  He continues to light up every time she comes in the room.  He gives her these great big smiles and keeps smiling for quite a while.  I am glad he loves his sister and she makes him smile.  

So we are praying for a smooth and uneventful Day 8 and confirmation that the treatment is working. 

More tomorrow, which ironically is superhero day at Laurel's school.  I assume you can guess who my favorite superhero is :-) 

Day 6 of Treatment

Day 6: A Visit from the Music Lady

Day 6, Wednesday, was a fairly low key day.  Elliott did have to get a unit of blood because his hemaglobin was a bit low, but other than that, just the routine oral medication.  Elliott was in good spirits for the most part, but I think he is finally starting to get tired of this routine.  He fussed for the first time today when he had to take his oral medication.  We have not had problems with oral medication at home, but the doses here are much stronger and probably do not taste very good, so he does not enjoy taking them.  Despite him catching on to the fact that there are a bunch of people coming in the room all the time to mess with him...yucky meds, blood pressure cuffs, thermometers under his arms, etc., he smiled quite a bit today, which is always comforting.  Two of my coworkers stopped by with two huge goody bags, one full of snacks for Elliott, William and I while we are here in the hospital, and one full of toys, games, clothes, and toiletries for the whole family along with two cards filled with kind words and prayers for our family.   Elliott was all smiles and enjoyed a snack while they were here.  It was awesome!   I love my job and my whole team is superb.  

William snuck away to get a check-up after not feeling all that great the past few weeks and the diagnosis, no surprise, exhaustion.  They are running some bloodwork just to be sure, so we pray everything else comes back normal.  Once William returned to the hospital, Elliottt received a visit from a musician who brought her guitar and gave him some musical instruments and sang several songs for him.  It was so sweet and so touching that William got a bit emotional and had to step in the hallway.  He was so appreciative that someone would put all their energy into helping Elliott feel better and put a smile on his face.  I should pause there here to say that I know it seems that William and I are "so strong" and several people have commented that they would be in pieces if they were in our shoes.  The reality is that we do have moments where  our emotions get the best of us.  Mine seem to be in the car the past couple days when I went home and was alone with my thoughts and had time to digest what is actually happening.  The stream of tears is constant at times, but I also feel extremely blessed that this is a curable cancer and we have a team of clinicians who are going to do everything in their power to ensure Elliott is taken care of and is cured of his leukemia.  I am reminded of God's faithfulness, so I can't let this bump in the road bring me down.  So, yes, we may have moments where we crumble, and others may never see, but hopefully our optimism and joy will outweigh those low times.  Not to mention Elliott certainly reacts based on our vibe, so we always try to keep the "cool, calm, collected" switch on for him, and for Laurel as well.  

The day ended with a visit from family (my mom, sister and nephew), and William's best friend.  Elliott shared several smiles with all the familiar faces.  Familiar is good for him in the midst of all the new faces.  Once everyone left, it was past his bedtime and he looked sleepy, but he layed down for a few minutes, then sat up and pointed to the basket of food where his snacks were.  They say oral prednisone gives you a very healthy appetite, as in the desire to eat constantly, like every hour or so, so perhaps it is starting to kicki n a bit.  He was wide awake and eating his snacks while pointing and talking to the tv.  I thought I was in for an all night party, but looks like he is out for the night.  His nurse just came to check his vitals and he barely budged.  They also say oral prednisone makes you very cranky, so hopefully Mr. Cool won't get too out of hand.

Tomorrow should be pretty low key as well and will be a nice break before his next big dose of chemo on Friday along with another lumbar puncture to see how he has responded to this first week.  

All the prayers, calls, texts, e-mails, and offers of support really does me a lot to us and is another source of encouragement.   At this point while we are still at the hospital, there is not a whole lot of support we need right now except for continued prayers that Elliott responds well to treatment and remains healthy, and that William, Laurel and I remain healthy, as well.  We know we will need support down the road, so we are working on a way to coordinate through the blog and will keep you posted.  

Day 5 of Treatment

Tuesday, Day 5 of treatment, was a little bit of a roller coaster for me, but it ended on a high note.  I stayed home with Laurel last night and took her to pre-school this morning while William spent the night with Elliott.  William told me Elliott had moments of whimpering last night and a look on his face William had not seen before.  That's probably the most challenging part of having an ill child who can't speak yet.  They cannot tell you what is wrong, so you don't know if they are in pain, scared, frustrated, tired, or something else all together.  Hearing that was a bit unsettling for me, especially since he seemed even more subdued and lethargic than normal this morning.  I arrived at the hospital just as the oncologist was making his morning rounds and all of his labs looked good and still moving in the expected direction.  While Elliott was resting, we took the time to speak with another patient on the floor and his mother who were referred to us by the nurse with our oncology clinic.  He also had T-cell ALL, but the leukemia had also spread to his spine and brain making his case a bit more complex.  He was diagnosed in March, so he is a little further down his journey in another phase of treatment (I will explain the phases of treatment later), however, the information they were able to share with us was very enlightening and gave us a better understanding of what to expect.  While it is certainly difficult having leukemia as a child, this patient is 15 years old.  That is certainly difficult too since one minute you are transitioning to high school and enjoying socializing with friends, and then suddenly you receive this diagnosis, can't go to school, have limited ability to socialize in person and enjoy the activities you once did.  In Elliott's case, he won't know what he is missing.  We were able to talk with him about how the treatments affected him, side effects of chemo, lifestyle changes, etc., so that was a great conversation. 

Day 5: Laurel and the Child Life Specialist

Day 5: Best buddies!

While the morning was a bit sluggish for Elliott, the afternoon was a completely different story.  I picked up Laurel from school and brought her to the hospital so she could speak with the child life specialist and have playtime with Elliott.  Elliott literally lit up when Laurel walked in the room.  His partner in crime was there at his bedside and he was ready to play.  The child life specialist read Laurel a story about Hannah who has cancer and the book helps break down cancer on a kid friendly level.  She also gave Laurel a "chemo duck" to help explain the treatment process better and let her interact with the duck to understand what will be happening with Elliott.  After that, it was off to the oncology unit playroom for some reserved private play for just Elliott and Laurel.  Elliott's face once again lit up as we walked down the hallway to the playroom.  You could tell he was so excited to get a change in scenery and leave his room.  They had the whole playroom to themselves!  It was great and I really appreciated that dedicated time for the two of them to play like "old times".  :-)

When we left, it was clear Elliott was worn out.  He may have overdone it a bit, but he was so excited to play.  We returned to the room for snacks and an attempt to wind down for dinner and bed, although Laurel was wired up and on overdrive until we returned home.   

Day 5: Playroom fun

Day 5: Little Drummer Boy and Girl

So the day started with some low moments and wondering if he was in pain or discomfort and ended with  seeing SEVERAL smiles on his face this afternoon. Today was the first day we have seen smiles since he has been in the hospital and if you have seen Elliott's big bright 2-tooth smile, you can't help but smile when he does. 

Before I end the post, I mentioned I would explain the 3 main phases of treatment for leukemia.  It will probably help provide some background on what a typical treatment plan looks like for T-cell acute lymphoblastic leukemia (ALL) and how long we expect to be on this "journey" I keep referencing. The three phases are induction (the phase we are in), consolidation/intensification, and maintenance.  The induction phase is 28 days, with the critical evaluations being at day 8 (Friday for us) and day 28 (August 22nd for us).  At those two points, more extensive tests will be done to determine how his body is responding to the treatment and will give us the most accurate picture.  During this induction phase he will be given a combination of 4 drugs either IV (through a central line or mediport), PO (by mouth), or intrathecal (into the spinal fluid, while sedated), his immune system will be very weak during this period as the chemotherpy drugs work to kill all the leukemia cells, but in the process end of killing both the good cells and the bad cells.  So don't get mad if we tell you to stay away or stick a thermometer in your mouth if you come to visit! :-)   The next phase is consolidation/intensification which lasts around another 6 months.  We haven't talked in detail to our oncologist about this phase yet.  It is very much a day by day discussion for now, but the way I understand it, a different combination of drugs will be used to kill remaining leukemia cells after the induction phase.  Most can be completed on an out-patient basis, but we may have some 2-3 day hospital stays from time to time.  The last phase is maintenance and will last for about 3 years (it's sometimes shorter for girls at 2 years, but 3 years for boys).  This will include less frequent visits to the oncology clinic and more oral medications.  After that, the hope and prayer is that we find no traces of cancer and we can consider that Elliott has kicked cancer's butt!!  For more info on treatment, you can visit this website.

So, we have quite a road ahead of us, and this is probably the easy part if you can believe that.  I feel confident we will have peaks and valleys, but we will be praying for God's grace and guidance every step of the way and know we have many many people praying with us! 

Day 3 of Treatment

Day 3

Day 3 was another day of tremendous hope and showed just how strong our little guy is.  He slept great through his first night off the ventilator and breathing just room air.  As I can only imagine, I think he liked having the breathing tube out of his throat.  I was a bit concerned that since they also weaned him off the sedation, he would be a little more restless or potentially even cranky, but he was cool as a fan.  The chest x-ray shows the mass (tumor) next to his heart is shrinking and the no additional fluid around his lungs or heart, so the chest tube that was helping drain the fluid in between his lungs and chest wall was removed.  Once again... he was cool as a fan during the removal, granted he had some drugs, but I think the intensivist thought he would give some grumblings still.  Once the chest tube came out, it was time to get discharged from the congenital heart surgical unit and move to the oncology unit.  I will miss the team on that unit.  They did an excellent job and somehow managed to keep Elliott (not to mention William and I) calm through those difficult few days.   We thought Elliott's new digs on the oncology unit would also be the best environment for our daughter, Laurel, to come for a visit to see her brother since he didn't have as many tubes and wires attached.  I wish I would have gotten a photo, but they shared a special bonding moment where they waved at each other and were playing a little bit through the bars on his crib.  It was very touching and makes me tear up a little just thinking about it.  I explained to her in basic terms what was going on and then she quickly got distracted by the desire for candy.  I gave her a mint from my purse the other day, so now she is convinced mommy carries candy in her purse.  I indulged her instead with a visit to the cafeteria to pick up some gummy bears.  After a little bit of playing in the play area, and reading a few books in the library, she was back to my parents house to prepare for pre-school tomorrow.  I am hoping to introduce her to the child life specialist soon so she can help me let Laurel know what to expect in the coming weeks, months, and years. 

Meanwhile, Elliott continues to do great.  He enjoyed more snuggle time with mommy this evening and even ate a little bit of spaghetti, grilled chicken, and milk.  Earlier in the afternoon, he sucked away at some of his favorite fruit and veggie pouches dropped of by one of his favorite babysitters. 

I am amazed at how cool, calm and collected he has been.  He has not really cried or looked uncomfortable at any point so far.  He hasn't needed any pain medication and has been extremely cooperative for all the nurses and physicians.  His vitals and labs are looking good and the numbers are where you would expect them, so we'll see what Day 4 has in store.  He will have one more chemo drug tomorrow and then no more chemo until Day 8 (Friday), which will be the first milestone day to see how he is doing and how well his body is doing trying to get rid of the leukemia. 

Day 2 of Treatment

Day 2

Elliott is responding well to chemotherapy. A large volume of fluid from his lungs and heart was removed over the last 24 hours. He was extubated this morning (They removed his breathing tube) and the pericardial tube has been removed. He is no longer sedated, and is becoming more and more alert every minute. We were able to hold for the first time since Wednesday this afternoon. He and Kyllan do not want to let each other go. He has been eating and drinking on his own this afternoon, but has yet to get his voice back. He still has his hair, which I have been threatening to cut for weeks. This is not how I wanted to see it go. As the medical team continues to monitor his ability to breath on his own, our goal in the next 24 hours is to have him moved from the cardiac ICU to the pediatric oncology wing. Once we are in the oncology we are going to bring his sister Laurel for a visit. They are best friends and have not seen each other since Wednesday.

Day 2

This time last week Kyllan and I were celebrating our daughter 3rd birthday with a party in the backyard and Elliott sounded his healthiest in a month.  We are overwhelmed and exhausted, but we find ourselves encouraged by Elliott's progress over the last 24 hours and all of our friends, family, and colleagues that have reached out to us. The pace of everything around should slow down once Elliott is able to be moved to oncology. Once that happens we will begin to think about the week ahead of us.