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 10 of Treatment- Elliott loves selfies

Sunday was Elliott's 12th day in the hospital and 10th day of treatment and things are going very well.  We are on track to go home on Tuesday.  Tomorrow, Monday, Elliott will have surgery bright and early in the morning to get his Medi-port and remove his central line.  They will keep him on more day to observe him and then we should be discharged on Tuesday.  William and I are thrilled at the idea of having everyone back under the same roof again. 

Day 10: "selfie"

Today, Elliott was fairly quiet and enjoyed more napping and cuddling with his grandparents.  Laurel also enjoyed some quality time with William's mom, aka, Bebe.  I was able to sneak home again today to get a decent shower and have a quick lunch with Laurel and Bebe. 

So now it's time for me to grab some sleep so I can be rested for an early start tomorrow.  Elliott is fortunately asleep in the crib and getting a platelet infusion in preparation for tomorrow.  His platelet count wasn't terribly low, but low enough that the oncologist wanted to make sure his levels were higher heading into surgery.  The platelets are the blood cells that help with clotting.  He will have his usual 4am lab draw, and not to long after that, it will be timed to get prepped.

Thanks for the continued prayers and support!!  I included a "selfie" Elliott and I took this afternoon. Not a great photo, but a great smile :-)

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 8 of Treatment: Superhero Day

Day 8: My favorite Superhero

Friday was Day 8 of treatment and Elliott had was a bit more fussy and clingy today, but did great.  It was superhero day at their school today, so I found a superman shirt so Elliott could participate too.  After all, he is a super kid!  Laurel is a superkid too.  I took a photo on my phone of Laurel in her superwoman shirt and showed it to Elliott this morning and he smiled.  :-)

We thought Elliott was due to have a bone marrow analysis today to let us know how the treatment is going as I mentioned in my post yesterday, but we found out this morning that the analysis will only happen on Day 28.  He started out the day with a lumbar puncture (spinal tap) to inject Methotrexate, a chemotherapy drug.  They did test some spinal fluid and there were no traces of leukemia, which is great because that means it has not spread to his spine nor brain and will likely not spread to those areas.  Following the lumbar puncture, he had IV injections of two other chemo drugs, Vincristine and Daunorubicin. 

Day 8:  Being silly with Grandpa

My dad spent the day at the hospital with me while William went home to get rest, so Elliott had a chance to make music with his food tray and act silly with my dad.  He seem to enjoy that.  For the rest of the afternoon, he was dosing in and out of sleep.  I tried a few times to put him back in the crib to nap, but he cried each time I tried to put him down.  This is the first time he has cried since he has been in the hospital, so I was a bit concerned for a while, but I think he just needed some extra cuddling after all of today's activity.    

William's parents arrived today, so he got to see more familiar faces.  I anticipate the weekend will be pretty low key.  We would have probably been able to go home today, but the oncologist recommended Elliott get his mediport put in before we go home.  A mediport is a device that is implanted just below the skin near the collar bone that will allow him to get his chemotherapy treatments through the port instead of having to poke him each time.  Right now he has a central line that they use to give him his medications, but he likes to pull on the tubing, not to mention central lines are only temporary and can't be used long term, so the mediport will be a much better option.  He is scheduled to get the mediport on Monday morning and he can hopefully go home on Tuesday.  Since we have extra help in town, I am going to take the opportunity to run errands and get the house prepared for when Elliott comes home.  It will be nice to have everyone back home again!

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 4 of Treatment

Day 4

Day 4 of treatment was another good day for Elliott.  Even more progress!  We were originally scheduled for a dose of chemo today (PEG-Aspariginase), but it has been postponed to Day 5.  Elliott had another great night of sleeping.  He has found it quite fascinating to pull and tug on his telemetry leads, so we moved those to his back instead and put a shirt on him to keep him from messing with the tape for his central line.  That made the night much easier.  He was a bit lethargic this morning.  The child life specialist brought him a playmat and some toys, but he was not quite interested.  He spent most of the morning quiet and content, but spent a good amount of time in the afternoon out of the bed and playing quietly on the mat.  He has a SERIOUS case of bed head, but who cares.  He did a great job eating three full meals today along with snacks and liquids, so he is getting used to that again.  The oncologist was pleased with his progress and his numbers continue to go in the right direction, so we hope this progress will continue.

William is staying at the hospital tonight while I came home to spend some time with Laurel and get her back on a more normal routine.  She has been staying at my parents house since Thursday, which is fine because she enjoys it and she gets things like cake and candy :-).. yeah... all those things I didn't get as a child.  I certainly don't want her to feel forgotten though, so I am going to take her to meet the child life specialist tomorrow afternoon, so  she can try to gain a better understanding of what is going on with Elliott. 

William is spending the night with Elliott tonight and I am home to sleep in my own bed for the first time since Wednesday.  Being in the house without Elliott is way more difficult than I thought.  Our home is always a time of hustle and bustle and loud kids, and it's just so quiet.  I had to find things to keep myself busy to not think about the fact Elliott was not here.  I look at the floor and it is not scattered with toys and Elliott scooting or crawling around the room to find me.  I really look forward to bringing him home soon.  I know we are in for difficult days ahead, but with all of the love, support and prayers we have, we will be just fine.

We had many encouraging phone calls, and visits today, but I will save those for a later post.

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.


Day 1 of Treatment

After having some time to think about it, Kyllan and I have decided that we are okay with sharing the photos we took of day one of his treatment. His improvement over the last 24 hours has been really encouraging and we would like to share that progress with everyone.

Day 1

Day 1