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.