The Hanway Family

Radiation is starting today. Thank you, God. It will take probably 7 days to see the tumor begin to shrink, so we needed to get this started ASAP and we kept being told Monday. She will be transported to CARTI for her radiation treatment. She will have to be sedated to keep her in the proper position to target the correct area. We still don't know the frequency or duration of this treatment. They will, unfortunately, have to do the full intubation because of her reflux issues, but that will make the already large amount of swelling get worse and possibly restrict her airway enough that she will have to get some form of tracheotomy in order to bypass all of that. The chances are small, but they are still there.

Overall, yesterday was actually a pretty good day for Abby. She sat up on the couch for her own for 4-5 hours, which is a great improvement. Her beloved Miss Helen and Miss Lisa from daycare came to visit and brought her cards from all the kids. As soon as she saw Miss Helen, she got a big smile on her face, which is only the second smile we've seen since this all started. I'm sad that she was asleep when Miss Lisa came because that's her favorite teacher.

Sadly, Abby was in quite a bit of pain yesterday afternoon. The pain team (a group of anesthesiologists) met with us to discuss putting Abby on a PCA to help manage her pain. There is concern about the larger amounts of morphine she had been receiving every four hours through her IV because of the sedation qualities of morphine and that restricting her airway because of being so relaxed. They agreed to put her on a pain pump, but they started at a very low dose, which did not have good control. Therefore, she was in pain quite a bit of the afternoon while they tried to get that adjusted.

Late yesterday afternoon, a PICC line was also inserted into her arm. This eliminates the need for an IV, so she now has both hands free. It also allows blood to be drawn from there, so no more needle sticks for that. Great news! She will be able to receive her TPN through there in order to get some nutrition because she is now NPO until her swelling goes down enough to allow her to swallow and it has already been a week since she has eaten anything of value.

We also met with a neurosurgeon yesterday about the small possibility of needing brain surgery if the tumor pushes on her brain enough to cause swelling. We didn't discuss much because he is hopeful that she will not need this, but he wanted us to be aware of the possibilities.

On Monday, Abby will have a bone scan, bone marrow biopsy, and a spinal tap. Those are all to insure that the cancer has not spread to those areas. When rhabdomyosarcoma metastasizes, it tends to go to the bone marrow.

Please pray that Abby has no problems with these additional sedations, that she is able to protect her airway, and that the cancer has not spread.

In order to minimize some of the phone calls and to get everyone the most accurate information, we will be putting all the updates on Abby's condition here on the blog.

Here's the sequence of events that has gotten us to where we are.

Starting last Sunday, Abby started not eating well and not sleeping well. On Monday, she started acting pretty tired all the time, though she was waking more often at night. She was pointing to the side of her face saying that it hurt. She was also drooling a little. We attributed this to getting her two year molars.

On Wednesday, her daycare teacher called and said that Abby's eyelid had started hurting and that her head hurt. I took her to the after hours clinic at her pediatrician. They quickly diagnosed her with a double ear infection. Almost immediately, we were sent to St. Michaels because they thought she had a very bad sinus infection as well. They did a CT scan and I was told that the ear infection on her right side was so severe that it had turned into mastoiditis, which is an infection of one of the skull bones around the ear. They also said that they thought they saw something wrong with her jaw area and that because of her history and because she needed an MRI, that she needed to go to Arkansas Children's Hospital that night. After a very long two hour wait, we finally got into an ambulance and took the ride to Little Rock. Leonard threw together a suitcase with some clothes and met us up there with Alexis. We called mom and asked her to come down to watch Alexis for us.

After a quick exam, we were taken into a room and told that she had a mass that looked like a solid tumor in her cheek/jaw area and that there was a high probability that it was cancer and we would be admitted to oncology that night. Then they showed us the CT scan and it looked bad. They said the tumor was about 4.5 cm across.

Unfortunately, the oncology unit was full so we were finally put in a ward room at about 5am. A ward room has four beds in it and is not at all private. Her oncologist (Dr. Salyors) came and talked to us. We were told that she needed a full body CT, an MRI and a biopsy of the tumor to determine what exactly it was. They were hoping that everything would get done that day (Thursday), but it didn't work out. We also met with her ENT (Dr. Richter, who looks after her swallowing problems) and he gave us an idea of what wold happen with the biopsy, as he would be the one performing it. Thankfully they were able to put us in a private room in oncology that afternoon. This room is so much better than the other. There's room for Leonard and I to sleep. We have our own bathroom, and, once she feels up to it, Abby has a very nice TV, movie, entertainment system to entertain her.

Yesterday they were able to get all of her tests in, though they didn't start until 3 pm. It wasn't until after 7pm that they came to get consent to put a T-tube (a more permanent tube) in her ear and for the doctor to talk to us. She has a large tumor. It starts behind her tonsils (they removed the right one during surgery), then goes up into her jaw area and has started eroding the jaw itself. The tumor is very large in this spot and goes all the way over to her nose, taking up the pharyngeal space. It is compressing her Eustachian tube, not allowing it to drain, which is the reason for the permanent tube. Then it follows the nerves up behind her eye and goes through a hole at the base of the skull and stays wrapped around the nerves for a little bit before it ends. Thankfully it has not entered her brain or the dura (covering in the brain), although it is pushing her brain upward. The fact that it is wrapped around the nerves and compressing them is what is causing the eye drooping. Starting yesterday, she is having a lot of trouble controlling the movement of her right eye and her mouth has started to droop and she is drooling more because it has also caused numbness. There is also no sign of the mastoiditis. Everything that they were seeing on the original CT was a result of the tumor.

This morning, Abby was taken down to radiology for another CT to check for any bleeding in her head as a result of yesterday's surgery. We're still waiting on the results, so hopefully that means everything is ok.

So, it is cancer. Both the oncologist and the ENT think the final pathology will come back as some type of rhabdomyosarcoma, which is a rare type of cancer. So far, the tumor is in one piece (good), the tumor has not entered the brain (good), the lymph nodes in her neck do not appear to be infected (good) and it is fast growing (bad). Until we know the specific type of cancer, we won't know what the treatment plan is. That will take several days. At some point in the next few days, she will be sedated again to have a bone scan, bone marrow biopsy, and have a port surgically implanted in her chest. The port will be used to administer the chemo and they will be able to draw blood from it as well, so no more needle sicks (yay!).

Abby is spending most of her time sleeping. Most of the time she doesn't really appear to be in pain, other than from the surgery right now. She has no appetite, which up until now has been a blessing because she has been NPO for so long. However, now the goal will be to get her to eat because she hardly eaten in the last week. Personally, I think that will help her feel much better.

Mom, April and Chris are here right now and have been sitting with us and also watching Alexis, who is not allowed in this part of the hospital. Mom is staying at least through the end of next week while April and Chris are leaving Sunday. Leonard's mom arrived Friday afternoon and his siblings arrived early Saturday morning. They will all be leaving Sunday as well.

If you have any questions, feel free to leave a comment on here or to e-mail one of us.

I know this is a few weeks late, but I'm finally getting around to updating about Alexis' 6 month check-up.

Alexis had her 6 month check-up yesterday. It's hard to believe she is already halfway through her first year. She's a big girl at 18lb 2.5oz and 26.75 inches, both of which are the 90th percentile. I think she's even longer than the 26 3/4. As always, her peanut head is in the 10th percentile. She has a flat spot on the back of her head (which I don't see), so we're supposed to make sure that she gets more tummy time, even though she gets plenty.

The doctor isn't too concerned about her not rolling back to front, ever, and her minimal rolling from front to back. She's sitting up on her own and has good strength, with no problems pushing up. She's reached all her other milestones, so we'll wait and see. Unfortunately, we still don't know if she has a heart murmur because she constantly talks whenever the doctor is trying to listen to her. She is a constant babbler.

She was a champ with her shots and only cried for few minutes. Then she fell asleep early, but wanted to be held most of the night.