An Emotional Roller Coaster

Please, Stop the Vomit! 

Wow. What a crazy week and a half since my last post. After Archer's third chemo treatment, he was doing pretty well, though because he was still throwing up, he had to come home on TPN (which is basically a liquid form of nourishment with proteins, calories, carbohydrates and added vitamins) along with a bag of lipids (the medical form of Crisco). He packs the bags and pumps around in a backpack that is as large as he is. Though he can't carry the backpack on his own, he does enjoy dragging it behind him. If you can see past the situation for a second, it is quite adorable!

What Break?

We were home for almost four days and looking forward to another week being away from the hospital, when Archer contracted a fever and we had to take him to the ER. Aubrey had been up all night giving him medicine every 3 hours and taking his temperature so I took him to UVRMC ER at 7:30 in the morning on Sunday while Aubrey and Kaesia slept. As soon as we were put in a room, Archer said he wanted to watch football. I was okay with that! They ran a bunch of tests and found out that he had Enterovirus and had to be admitted at PCMC for a couple days. We had promised Kaesia that we were going to play with her all week since it was Archer's week off from chemo. She was heartbroken when Aubrey left her and she had to be peeled off her leg, screaming and crying. It was terrible! Archer was also elated to leave UVRMC so you can imagine the devastation when we got to Primary Children's. His first two words upon arrival were "fish" and "pizza" so we let him drown his sorrows in an ocean of fish and cheesy, round bliss.

Aubrey and Archer spent the next couple of days in the hospital while Kaesia and I tried to manage without them. She was babysat a lot while I went to work and school so I promised her that Monday night, we would go on a date. We ended up going to feed the ducks and she was ecstatic. It was so good to see her having so much fun! 

Home, Sweet Home

Archer was discharged early Tuesday evening after having his week 4 tests (chest x-ray, ultrasound, audiogram, blood tests, etc.). He was so excited to come home! He has been running around (which makes it hard to keep up with him with all the tubes and pumps), talking up a storm and being quite the little jokester. He hasn't thrown up consistently for several days now and is generally feeling quite well. 

The Hard Part

Though things are going well right now, this last week and a half has been astonishingly difficult the majority of the time. Archer has been throwing up, attached to tubes 24/7 with his port accessed and having to take medicine every three hours to try and stop him from throwing up. Aubrey has been catching throw up, spending day and night at the hospital, feeling like a terrible mother because she goes days without seeing Kaesia and being overwhelmed by the constant attention that Archer requires. Kaesia has been having fun with the family that is babysitting her but has a hard time sleeping away from home and all she wants is for all of us to be together at home. 

Work and school is always busy but this past week, I had to have surgery to remove a pre-cancerous tumor that was found on my leg last month during my annual cancer checkup. I was expecting an excision site of about an inch or maybe two inches in length but it ended up being just over four inches long, an inch wide and about an inch and a half deep. This made it so I could barely walk for three or four days, making it even more difficult for Aubrey. 

There have been more times than I can count this week where we felt like we weren't going to be able to make it through the day. As Aubrey's mom pointed out, we were a pretty pathetic bunch with Archer attached to hoses, me not being able to walk, Kaesia looking like a homeless child because she hadn't bathed for a couple days and Aubrey wearing Scotch tape glasses from Archer's latest attempt at wearing them. 

There Is A Bright Side

Through all of this, we've had those redeeming moments that refresh our minds and help us pull through. Seeing Archer throw his hands up in the air and shout "Yay" in his most nasally voice whenever he gets to come home. Watching Kaesia chase a swarm of over 20 ducks, hurling stale bread at them and wondering why they don't just flock toward her. It is moments like that which make this bearable.

A bit of light shining through the cloud cover is that Archer's tests all came back great. The tumor in his liver has reduced almost 20% in size, his hearing is still at 100% and his counts are all great. And even though he has enterovirus, he has only had a minor fever, slight cough and stuffy nose. And according to the doctors, his hair should have fallen out by now. He may be one of VERY few that doesn't lose it after all.

Stormy Seas

Treatment #2

It all started with treatment #2. Archer was admitted on Tuesday (9/2) to undergo his second round of chemotherapy. Upon admittance, the decision was made to only give him one type of antiemetic, rather than the three that they alternated with the week prior. A short ways into the treatments, Archer started vomiting. At this point, they switched to alternating the three different antiemetics, but the damage had already been done. The doctor told us the week prior that once he starts throwing up, it is very difficult to stop it from happening so prevention is the key. Well, she was right. 

At work on Wednesday I got a phone call from Aubrey. She was in tears. She was frustrated that the nursing staff didn't give him the proper medications to begin with to prevent him from vomiting and that one of the techs lost her patience with Archer while trying to get his vitals. Aubrey told her to wait ten minutes until he calmed down from his tantrum. They had just given him some oral medication that he detests. She insisted on getting it right then and ended up forcing the various instruments on him and getting an inaccurate result, all the while telling him to calm down in a harsh tone. It didn't make matters better. 

Discharge and More Discharge

On Thursday, we were discharged from the hospital. He came home vomiting but happy to be out of the hospital. He kept little down on Thursday and on Friday, he got worse. Aubrey called PCH and spoke with the Fellow (Allison Ast) that we have been working with. She suggested a clear liquids only diet for 24 hours and instructed Aubrey to call her back if it was still happening at that time. She also prescribed Benedryl to be taken in addition to the Zofran that he already was. Several baths, dirty towels and a lot of cleanup later, we let Allison know that it was still happening. 

He needed antiemetics to keep from throwing up but everything we gave him, including the medications, was being thrown up within 10 to 15 minutes. She suggested giving him small amounts of liquid through a syringe every few minutes and if he hadn't had at least 2 more wet diapers by the evening, we needed to call and readmit him for rehydration. As you can probably guess, we ended up having to admit him. 

The Longest Night

We got to the ER at PCH just before 11. Apparently they were very busy and it took what felt like an eternity to get him in a room and start fluids. His blood sugar was low so they administered Dextrose along with the fluids. After a few hours hanging out there, we were admitted to our room a little after 5am. They had made a bed for us, which just seemed to taunt us as we still had to go over a few things before collapsing onto it. We finally got to bed around 6am, but I wasn't able to get much sleep. In fact, that is why I'm writing this.

Iced Cake

One of the things that made this week so difficult is that I am back in school now so I have been little help to Aubrey. She has been remarkable through all of this! I always knew that she was amazing but I had no idea she was this amazing. She has remained so positive and collected through all of this, even when a lot of the time, she has to handle it all on her own.

I have gone to school full time and worked full time for four and a half years now. It has been challenging but never really overwhelming. However, this semester (thankfully my last) has indeed been overwhelming. I haven't had more than 5 hours of sleep in a day for over two weeks. Most of time it's around 3.  I feel guilty that I am always gone when Aubrey, Archer and Kaesia are going through all of this at home and at the hospital. It is difficult to focus on anything for an extended period of time. And I feel like I am losing control of this well-oiled machine that we had tuned to near perfection. 

A Child's Outlook

Archer is the most good natured child I have ever seen in my life. I may be biased, I realize this. However, Friday, after throwing up 5 times within an hour, he smiled for Aubrey as she took his picture. He has been out of this world sick for the last few days and he has never cried. He is such an incredible example of patience!

We have missed Kaesia immensely as she is with family during our hospital stays and she has missed us as well. All of this is hard on her as well. She asks Heavenly Father to bless Archer in pretty much every prayer she gives and she has been so sweet to him, but you can tell that she is having a rough time with all of it. 

 

Strength in Numbers

The Falling of Many (Hairs)

Tomorrow starts Archer's second week of treatments and they said that he would start to lose his hair after this treatment. Following some advice from a dear friend, we decided to shave his head before all of his hair fell out on its own, in hopes to save some heartache. There were several people that wanted to support Archer in losing his hair by shaving their heads as well. Those that have shaved their heads so far are myself, grandpas Shayne and Neil, and uncles Bronson and Stephen. Uncles Spencer and Brett are going to join in as well and maybe Uncle Austin.

Since there were so many in Aubrey's family that wanted to
participate, we decided to do it all at the same time and have a head shaving party. Jennifer (Kendall) Jeppson came over and took family pictures before we lost all of our hair, and stayed to document the event. We got four sets of hair clippers and sat on the porch while our wives (Jennifer helped Steve) shaved our heads. We then took the clippers to Archer's head. It was quite a fun event and certainly helped to alleviate some of Aubrey's sorrow in having him lose his hair. Archer didn't like having his head shaved much but he sure does look cute! Thanks to all of those who are willing to look like snow globes to support Archer!

A Random Funny or Three

Here are a few quotes from our sweet little Kaesia over the last two days. As she sat on the toilet, she pointed her finger at Aubrey and said,

Mom, write this down. The days will go by. There is no reason to be sad. Because I'm right here. I love you so much that I didn't want candy besides... well... and also that we love our family very much all day long. And all day long we all say our names LOUD and we love our family and I love my brother and Santa likes to come by too and give me presents. Did you get all that? Did you write that down?"

Last night, Kaesia was showing my parents the "cool" way to hold up three fingers which, in case you didn't know, is holding up the pinky, ring finger and middle finger. Aubrey then told her that holding up her index finger, middle finger, and ring finger is actually more difficult. Kaesia then proceeded to correct her, "No, mom. This way is actually harder. For little kids. That is all I can do, mom. I can't do anything better than that."

After she finished drinking her cup of milk tonight, she walked over to Aubrey, handed her the empty cup and said, "I am officially done, Mom!" She is so adorable!

Home At Last

Back at Home

It has now been three days since Archer was discharged from the hospital and able to come home. As you can imagine, we were all excited when that time came but probably no one more than Archer. For the last few hours in the hospital, he told the nurses "bye" as soon as they entered the room. We're not sure if he was telling them to get out because he was going home or just telling them that he was getting outta there. Either way, he was more than content.

The whole time back at home has been great. Archer has been extremely talkative (probably even more than he was before going in) and he has been such a sweetheart. He hasn't cried for more than 10 minutes total in the last three days. He has been playing with all of the new toys that people have given him over the last week and he likes them a lot! Now the only thing missing is Kaesia!

Kaesia's Week of Fun

Kaesia has been having such a great time with her Aunt Jenny! Every night that we've called to talk to her, she will only talk to about a minute if we're lucky. She is having too much fun and doesn't want to talk to her boring old parents, I guess. As much as I would love to talk to her, it is nice to know that she is having fun and not missing home. Aubrey went down to get her today though and will be bringing her back home this evening. I am excited to see her!

Preparation and Support

In preparation for Archer losing his hair because of the chemo treatments, we are shaving his head tomorrow afternoon. Several other people, including myself and Aubrey are going to join him. If any of you would like to join in on the fun, feel free. And if you do, I will expect to see pictures on Facebook. I will be posting some before and after pictures in my next blog post so watch out for that one. Just make sure you put on your sunglasses before looking too closely at the pictures as our heads will be blinding white I'm sure. Now that you have read this far, I should probably let you know that Aubrey isn't really going to shave her head.

Love, Laughs and More Pizza

Support

First off, there has been an incredible amount of support that we have received, from monetary donations to gifts of snacks, blankets, stuffed animals, pillows, toys, activity books and games to meals and countless other things. Thank you all so much for your help through this. It is very much appreciated and extremely beneficial! Even knowing how many people are reading the blog, or at least telling me that they read it ;) and knowing how much people care about him and our family is definitely helping in the coping process. Your prayers and acts of services are definitely being felt!

Status Update

Archer handled his first chemotherapy treatment extremely well. He has been in a bit of pain from the port in his chest which has caused him to be a little bit cross but other than that, he has been outstanding! He has had an excellent appetite, though it is still just pizza and bananas that he wants. We are going to give the kitchen a heads up before we come next week so they can stock up on cheese and pepperoni. He has also had a pretty good amount of energy and has been awake most of the day. He loves playing with the blocks that the hospital brought him and he has plenty of other toys to keep him busy throughout the day. He is also getting a lot of fluid through his IV and his kidneys are working well to get all of the Cisplatin (chemo med) out of his body. In fact, he is doing so well that he will most likely be discharged tomorrow morning. 

The one minor concern that we had is that at 1:00 am this morning, he had to have a blood transfusion. They said that it is very common and almost expected when going through chemo, but there is always a risk with it. They performed the transfusion over a two hour period and they had to check his vital signs about every ten minutes. He slept through the entire transfusion, even with the nurses constantly in the room. Everything went well with the transfusion though and he didn't have any negative reaction to it at all. He truly is a tough kid and it is inspiring to see how well he has adapted to this new temporary lifestyle. 

One Quick Funny

The nurse came in last night to take his blood pressure and get his temperature and oxygen levels. She went to put the bp cuff on his leg, as they had been doing the entire time, when Archer said "no" and held up his right arm. The nurse complied with his request. She then went to put the pulse oximeter (just Googled that) on his toe, as was customary. Archer told her "no" and held up his left hand. She then went to place it on his index finger and he again denied the attempt, sticking his thumb up. The nurse again complied. She then went to place the thermometer under his right arm. As you can probably guess, Archer did not approve but instead revealed his let armpit, inviting the thermometer in. Everyone chuckled and the nurse casually said, "He is going to be one of those that as soon as I open the door, his toe and arm will shoot into the air." Well, by now, you know Archer. He launched one arm and one foot high into the air. He is so much like his mother.

Kaesia

Kaesia has been staying with Aubrey's sister, Jenny, since Tuesday and she is having a blast. So much fun that she barely wants to talk to us when we call her. She just wants to play. She did sing a sweet version of "Mommy Comes Back" to Aubrey before she left. The lyrics were "I will always come back..." and after finishing the song said, "But I will have fun! And you too." and touched Aubrey gently on the end of her nose. It was precious!

Day 1

Pre-Operation

Archer woke up this morning at 7am with a smiling face! He was even excited to see the garbage waiting to be taken out at the front door as he exclaimed "garbage!" in an overly joyous tone. We made it to the hospital close to on time, despite terrible traffic. With a smile on his face the whole time, Archer played with toys, watched The Muppets and made friends with a little boy named Max.

Port Placement

Archer was taken from us around 10 am to get the "Power Port" installed in his chest. The procedure went very well and while Archer had a little bit of a hard time waking up fully from the anesthesia, there were no complications. He is a trooper and the nurses were all amazed at how calm he was after coming out of anesthesia. They said that most kids are quite cross but Archer didn't even whimper. He gazed very intently into the depths of his own thoughts. One can only imagine what went on in there.

Admittance

Immediately after he awoke, we were admitted to a room and the surgical oncologists (Dr. Verma and Dr. Ast) came in to educate us about what to expect from chemotherapy. They informed us that his cancer was at stage IV and that they were much more worried about Archer than a lot of other children with hepatoblastoma because there are several nodules in his lungs (12 to 15 or more).  They informed us that there are two main protocols to treat hepatoblastoma, one used primarily in the US and the other used primarily in Europe. There are benefits and downsides to both, but they are choosing to follow the European protocol, which is much more aggressive, because of all of the affected areas in his lungs. This means that the treatment plan is different than what we thought but it also means that the risk of the cancer returning is less. However, the risk of permanent hearing loss is much higher at around 50%. 

As you can imagine, this was heartbreaking news. That high of a risk for permanent hearing loss is one thing but the fact that the cancer has spread much more than we understood initially was truly crushing!

Treatment

Disregard pretty much everything that I said about treatment in the prior blog post. That was the process for the other protocol. The treatment at this point will consist of several chemo treatments in a few different blocks. They will be using 3 different types of chemo medication and they are currently administering his first dose. Each dose will be administered over the course of a 24 hour period, then they will administer fluids over the next 24 hours to make sure that his body is flushing it all out. He will have three treatments over three weeks, then one week off, three more on, one more off, two on and then two off. At that time, they will see if the tumor is recessed enough to remove it. If not, they will do 6 more weeks with one on, two off, one on and two more off. After removal of the tumor, they will continue chemo for 9 weeks.

After finding all of this out, Archer finally got some food. All he had been asking for all day was pizza and pizza is exactly what he got! Pepperoni pizza. He insisted that Aubrey hold the pizza but he pecked at it like a little bird and he chowed down three slices before it even seemed like he took a breath! After he devoured the first three slices, he decided that he could maybe hold it and eat it at the same time. There is a video of him devouring his pizza at the end of this post. 

Emotions

As you can probably imagine, we have been on the Goliath of roller coasters today when it comes to emotions. I have always had immense respect for people that have had to go through chemotherapy and radiation treatments but you can never understand what that entails without living it first hand. I'm not one to wear emotions on my sleeve so this next portion of the post is very out of character. In fact, I would say I'm an expert at keeping my cool no matter what I'm feeling. I am, however, right now, feeling helpless, scared and shamelessly overwhelmed for what Archer is about to endure over the next few months. It is so hard to think of your baby boy sitting in a hospital, surrounded by people he doesn't know, being loaded up with medications that make him feel everything from nauseated to completely unaware, and knowing that you still need to go on with your routine as if that wasn't the case. I honestly don't know how people do it.

Initiation

Archer Kent Wagstaff will be 21 months old on Tuesday, August 26. On Monday, August 25, he begins chemotherapy for hepatoblastoma (liver cancer). He is such a good natured and strong child and we love him dearly!

History:

Archer has always had a difficult time when getting new teeth. They are usually accompanied by a fever and even vomiting. That's why when he started experiencing these symptoms some time early last week, we thought little of it. The symptoms lasted a couple days longer than usual, so Aubrey decided to take Archer to our pediatrician on Monday (8/18). Our normal pediatrician was out of the office, so Aubrey met with the other doctor in the same office, Dr. Douglas Hacking. After a quick examination, he discovered that little Archer's liver was "massive", and he ordered a blood test and ultrasound.

Tests:

Archer went in for blood work and didn't flinch the slightest bit when they inserted the needle into his arm. The nurses were impressed by his bravery and he even told the nurses "thank you" afterward. Following the ultrasound, we received a call from Dr. Hacking saying that the Radiologist hadn't had a chance to look at the ultrasound yet but the technician suggested a large mass on his liver. We slept little that night with the possibilities of what it could be occupying our thoughts. Tuesday morning (8/19), we were ordered a CT scan at Utah Valley Regional. Upon arrival, we were informed by the surgical oncologist, Dr. Rebecca Meyers, that UVRMC did not have the technology necessary to perform the triple phase CT scan that she needed. She sat down with us and went over all of the possibilities of what it could be and explained how they would determine it. She also informed us that at his age, hepatoblastoma was the most likely. She then had Primary Children's Hospital schedule the scan for the following day.

After another restless night, we drove up to PCH on Wednesday (8/20) and started the process up there. They let us know that if they suspected any form of cancerous tumor, they would perform a biopsy immediately following the CT scan, while Archer was still sedated. As it turns out, the mass was a tumor and it was suspected to be cancerous so they did conduct the biopsy as well. We were able to remain with him during the CT scan but had to wait out in the hallway for an incredibly long 30 minutes while they performed the biopsy.

The biopsy went very smoothly and they said that the results could take up to 5 days but we may know the following day. Archer then was admitted to the Rapid Treatment Unit and put on bed rest for 4 hours. It was heartbreaking to watch him lie there and cry because all he wanted was to be held, but couldn't. As we passed the nurse's desk on the way out, Archer had to say "Bye bye. Thank you!" to each of the 5 or 6 nurses there. Needless to say, he has won the hearts of all the nurses up there. We then went home for another sleepless night (sensing a pattern?) and were greeted in the morning with the news that he most certainly had hepatoblastoma in his liver!

Prognosis:

While we were at PCH on Wednesday, we met with a couple of the oncologists that will be helping Archer through his treatments, Dr. Anupam Verma and Dr. Allison Ast. They were very hopeful of the outcome and informed us that Dr. Meyers is one of the world's leading doctors in hepatoblastoma and is on the board that writes the treatment protocols for the disease. In other words, there is no one better that we could have as his primary oncologist. They proceeded to tell us how the treatment will work and the prognosis. The survival rate is very high and hepatoblastoma is particularly responsive to chemotherapy.

They also showed the scans that they took and we were able to see the tumor and just how large it is. The tumor itself is over twice the size of a normal liver for Archer's age. This means that his liver (and tumor) fill up almost the entire right half of his abdominal cavity. His left kidney is round and plump and his right kidney looks like it has been run over by a truck it is so smashed. His stomach and other organs are also having their space invaded by the giant tumor, hence the consistent vomiting. The cancer has started to spread to his lungs, as they found a couple of nodules but they are hopeful that the chemo treatments will take care of that.

Treatment:

Because the tumor is so large, surgical removal is out of the question without first going through chemotherapy to break down the tumor. Archer will have a port put in his chest on Monday (8/25) through which they will administer the chemotherapy. His first chemo treatment will immediately follow. The doctors are hoping that after 2 rounds of chemotherapy, the tumor will be small enough to operate on. If not, they will do two more rounds. If it is still too large to remove by means of surgery, they will have to perform a liver transplant. After the removal of the tumor, he will have to do two or four more rounds of chemotherapy in order to get rid of all existing cancer cells.

Each round of chemotherapy will be pretty tough on the little guy. As with all chemotherapy, he will require some recovery time between each round and his immune system will be very weak during this time period. He will be hospitalized for about 4 days after each treatment, during which time they will make sure that his body is getting rid of all the toxins released during the chemo process. He will then have 3 to 4 weeks to recover before starting the subsequent treatment. All in all, the process will take at least 7 or 8 months until he is fully recovered.

Big Sister:

Kaesia has been so sweet and helpful to us and to Archer the last week. I don't think that she really understands what is going on but she certainly knows that Archer needs extra love from her!





Thanks!

Since we have found out about all of this, we have received a tremendous amount of support. For the sake of space and privacy we don't want to list out all of the names of those to whom we are grateful but we do wish to thank you all tremendously! You know who you are. We are so blessed to have such great family and friends. There have even been a few other people involved who we don't even know.