The Hanway Family

Well, not much has been going on around here, thankfully. We were able to go home last weekend for the first time in three weeks. It was wonderful. Abby was able to play with her best friend, Destini. They had a great time and it really lifted Abby's spirits. Almost as soon as we got home on that Friday night, Abby asked to have macaroni and she's been eating ever since. None of it is healthy, but that doesn't matter right now.

Unfortunately, Abby has started having trouble with secretions from the radiation. That means that she has to be intubated every day for radiation because she's not able to keep her oxygen saturation up and it drops into the 70's and 80's. The first time it happened, they postponed radiation and sent us to the hospital for a blood transfusion and to check for pneumonia. That turned a day that was supposed to be over by 8:30 into one that lasted until 4pm! She is such a trooper with the radiation. She doesn't like the waiting room, but once they call her name, she jumps up and walks back there, puts down her snacks and takes off her coat, jumps up on the table, and puts her finger out for the pulse-ox.

Friday Abby was admitted to the hospital for her big chemo. She did really well with the chemo itself - no nausea or anything. The problems came with her IVIG. This helps protect her against viruses. A reaction isn't uncommon, but it still scared me. She got tachycardic, had high blood pressure, spiked a fever, and started shaking badly. They stopped it for awhile, then restarted it at a slower rate and she did fine. She's still been running a little bit of a fever, but nothing too alarming.

The great news from this week is that ABBY FINALLY STARTED TALKING!!!! It's been a long four weeks without hearing words from her. It is absolutely wonderful to hear her say Mommy, Daddy and Alexi (she always leaves off the S) again. Her voice doesn't sound quite the same, probably because it hasn't been used in so long and she's not talking as much as she was before, but that will come with time. The other great news is that her right eye is starting to open some. Right now, it is probably open 1/3 of the way. It seems to open a little bit more every day. We are hoping to get into an opthamologist some time next week for an exam and to try and determine if she still has vision in that eye.

We've been enjoying this time as a family. We went to the zoo and to Pinnacle Mountain State Park this week. We're supposed to have more good weather this week, so we'll probably hit up the zoo a few more times, especially since Abby loved the monkeys last time.



In Alexis news, she is finally getting up on all fours! Thanks to Mom, she is also mostly sleeping through the night, or at least not eating during the night at all. She is a ham and smiles all the time. Still no teeth, but Abby didn't get hers until nine months, so I'm not surprised.

Abby was finally released from the hospital on Tuesday. It was a great day! We will still have to stay around Little Rock for the next 3 1/2 weeks or so until Abby finishes her radiation. Thankfully, we were moved into an apartment furnished by CARTI today so that we don't have to worry about housing while we are here. We are overjoyed that Alexis will now be able to join us. Abby has really missed her sister and it raises her spirits to be able to see her.

We have enjoyed these last two days of freedom. We became members of the zoo yesterday because that is one place we can go that's public but has a minimum of people germs. I'm sure we will be frequenting the zoo. Today we went to the River Market and walked around for a little bit. We also went to the playground both days. It has raised Abby's spirits considerably. She is even cooperating at radiation and when it comes to cleaning her button.


Once radiation is complete, we will still have to visit Little Rock every Friday for the foreseeable future in order to get chemo. Every third Friday will be her big chemo and will require an overnight hospital stay.

Sadly, Abby's hair is now starting to fall out. I'm hoping that this is going to be harder on me than it is on her. I hate the thought of her losing her hair and hope that her friends will still be accepting of her when she is finally able to see them again.

Abby had another MRI last Friday. We got the results on Saturday. It showed that the tumor measures bigger, but it's not new growth. It is measuring bigger because it is swelling as a result of being irritated from the radiation. Luckily, even with the swelling, the tumor has not expanded in her brain cavity or around the important veins. The good news that we got is that the center of the tumor is already starting to necrose (die). When it necroses enough, the tumor will begin to collapse on itself and that is when it will start to shrink.

We had a discussion with the ENTs and oncologist and the consensus is that the very earliest Abby would have surgery to remove the tumor would be 6 weeks after radiation is complete. It will probably be later than that because we want it to shrink to the smallest possible size to make it less invasive. As long as the tumor is up in her brain cavity and around those important veins, she will not have the surgery.

Other than that, our weekend was pretty low key. The hope is that we will be able to leave the hospital the middle of this week. They have transitioned all her medications from IV to her feeding tube, which is one step toward leaving the hospital. We have yet to find out what our living arrangements will be for the next 4 weeks or so, so that will be our next hurdle.

Unfortunately, we are still stuck at 20 radiation treatments remaining. They did not do radiation on Thursday or Friday because CARTI thought it was too close to surgery. Needless to say, we were very surprised when we showed up this morning and all they did was another CT and to make another mask. This was something that could have easily been done last Friday and we were not very happy.

We thank everyone for their continuing prayers and generosity. We are also very thankful that Abby and Alexis were able to spend some quality time together this weekend even though Abby was not feeling that great. She lights up when she sees her sister and we even got to see the chicken dance twice.

Finally, after almost two weeks, we have a diagnosis. Abby officially has Sclerosing Rhabdomyosarcoma. This is a very rare variant of Rhabdo and was only identified ten years ago. There are very few cases that have ever been identified. The good news is that we started the correct chemo for rhabdo, so we got a jump start on things by starting before we got the official pathology report.

Abby was able to be extubated today. She did not like the sedation and enjoyed scaring the nurses. At one point, she got up on all fours when they turned their back. Another time, she sat almost straight up in bed. These were both with the ventilator in and when she was supposed to be completely sedated. She is eating - popsicle, ice cream, macaroni, banana, and applesauce.

In other big news, Abby has started talking a little! After two weeks of nothing, this is great. She told me "I want more eat." She also told me "Hold you.", which she always says when she wants up. I missed her saying banana, milk, water, and medicine. I hope we only see improvements from here on out.

Maybe it's the prayers to Mother Theresa, whose relic the nuns gave mom at church this morning. Maybe it's the prayers to St. Peregrine, the patron saint of cancer. Maybe it's the medicine. Maybe it's the fact that she's getting food again. Whatever it is, Abby had an amazing afternoon.

It started with Abby eating almost an entire serving of macaroni and cheese. Then, when we asked her if she wanted to take a walk, she said yes. She wanted to go through the double doors to leave the Hem/Onc ward, so we told her she had to put her mask on to leave. After shaking her head no a few times, she finally complied, which was a first. We called Leonard's mom to see if Alexis was still here and she was, so we headed downstairs. As soon as Abby saw Alexis, she started pointing and waving as fast as she could. Once we let her down, she tried running over to her. The first thing she did was rip off her mask so she could give her hugs and kisses. After one kiss, we made her put the mask back on and she never tried to take it off again. Then came more hugs and kisses through the mask. Then Abby started doing the chicken dance for Alexis! I was crying because this is the first time in a week and a half that we actually got a glimpse of our Abby. I felt so relieved. Even if it's just one day, it's a start and I know my Abby is still in there.

After Alexis left, she wanted to walk for awhile, which was a good sign. When we got up to the floor, she spotted the cozy coupe and wanted to play! She climbed right in and Leonard and I took turns pushing her and her IV pole around. It was so wonderful to see her playing and having fun again.

The spinal tap was negative and the only place that lit up on the bone scan was in her jaw, which wasn't a surprise. We're very glad that it doesn't appear to be anywhere else right now. I think the final test we have is the PET scan, which is supposed to be next Thursday.

We made the decision to start chemo on Thursday and got started the next day. The chemo reacts with the radiation, so she needs to get it on Friday nights to minimize the interaction with the radiation. She didn't seem to have any side effects from the chemo, which was good. The chemo she is getting right now is vincristine, actinomycin-D, and cytoxan. For the first round, she will get it once a week for three weeks, assuming that her biopsy comes back as rhabdomyosarcoma.

Just because she didn't have a reaction to the chemo doesn't mean that she didn't have an interesting night. We'll just say that the miralax that they've been giving her finally worked and that she doesn't tolerate her g-tube feeds when she's laying down. We went through four sets of sheets early in the morning.

April drove down Friday and Aunt Rosanna, Aunt Carmela, Uncle Tony and Uncle Phil all made the drive down yesterday. It's nice to see some family that we haven't seen for awhile, though Abby isn't interested in seeing them at all.

Abby has actually been in a much better mood since yesterday morning. She hasn't pulled off her pulse-ox and is mostly cooperating when they try to take her blood pressure and temperature. It's good that she's hopefully getting back to her old self, at least a little.

We finally got our first piece of good news today. The cancer has not spread to her bone marrow!!! That means survival could possibly be as high as 60-70%!! I never thought I'd get excited about a 60% chance that my daughter will live, but it's better than the 30% that we'd been told. The results of the spinal tap still aren't back, but that's ok for now. The cancer was more likely to have spread to the bone marrow than the spinal fluid.

Abby had a big day on Wednesday. In addition to radiation in the morning, she had her port placed for chemo, her g-tube put in, a double bone marrow aspiration and biopsy and the lumbar puncture. She came through it like a champ, but I didn't expect any less. She slept the whole rest of the day and the night after that, which was a good thing because she ended up being NPO for over 36 hours.

Yesterday afternoon she was finally able to start eating. Before the day was over, she had chowed down on 4 popsicles, some chocolate covered pretzels (Thank you, Giddens family!), and a 3 oz container of ice cream. That's more than she's eaten in nearly 2 weeks combined. They also started her on tube feeds, which eases our mind a lot. We no longer have to be worried about getting nutrition or oral meds into her.

Today will be another big day for Abby. After some conversations with her oncologist and a meeting of the tumor board, we have made the decision to start chemo today. Normally they would recommend waiting because the results of the biopsy are still inconclusive for the type of cancer. However, because the tumor is inside her brain cavity and is putting pressure on her cavernous sinus, it is important to shrink the tumor as quickly as possible.

Please pray that Abby does not have any major side effects from the chemo, that we made the right decision regarding starting chemo, and that the pathologists are able to come to a consensus on the type of tumor that this is. Last of all, please pray for total remission and a long, healthy life for Abby.

Today was a tough day. We heard a lot of things that we didn't want to. For the next two weeks, until the radiation has time to start working, Abby is at a very high risk for a stroke or a brain bleed because of the tumor wrapping around all the vessels and arteries going to her brain. If that happens, there is nothing that they can do for her. Talk about a punch in the gut. It makes me sick to think about losing her, but the very real possibility that it may happen in the next two weeks...I just don't know. It seems like I haven't done anything but cry these last few days.

We are still waiting on several things to happen and I am very frustrated. Her biopsy was supposed to be finalized either last night or this morning, which well tell us what type of chemo she needs. She also needs to go back into surgery to have her port installed, which will allow her to get rid of the PICC line. They will also be putting in a g-tube, which will allow us to feed her directly into her stomach. Because of the radiation to her face, she will most likely get very bad sores inside her mouth and will prevent her from eating, so this will be the best way to get nutrition into her long-term. She also still needs a bone marrow aspiration to tell us if the cancer is in her bone marrow. That's where rhabdo likes to travel to first and if that has happened with Abby, the survival rate is not good. She also needs the bone scan and lumbar puncture. (Edit: everything but the bone scan will happen tomorrow.)

Radiation started yesterday. She did very well and recovery from anesthesia was much easier than the day before. They didn't do radiation on Sunday because the updated CT didn't show much growth. They decided to make her mask and do the markers so that they can more accurately target the tumor and do less damage than if they'd had to do the entire right side of her head. For her radiation, she will have 28 treatments (5 days/week for 5 1/2 weeks). She will be having IMRT radiation using protons, for those who are interested in the specific type.

Today they will also be doing several baseline tests - an echo for her heart, hearing test because there is a large possibility that her hearing will be damaged. They may also do a kidney function test.

Overall, she is understandably frustrated, as are we. She just sleeps and watches tv most of the time. She fights the nurses on everything. We walked around for a little bit after radiation, which helped her calm down. She enjoys the ambulance rides to her radiation, but not on the way back because she's still trying to wake up from the anesthesia.

It seems like everything is going in slow motion and I wish that we would get started with chemo to give us the best chance possible. There are just so many unknowns that make it overwhelming, plus the fact that this is all so new to us. I have to just keep telling myself that she will make it through, especially with so many people praying for her. We want to thank everyone for their thoughts and prayers and everything that they have done for us so far.