The Hanway Family

I apologize for not updating earlier.  For the most part, things have been relatively calm recently.  Abby's has still been doing her five days of chemo everything three weeks.  Her last round of chemo was very hard on her and she ended up in the hospital again the Saturday after Thanksgiving.  The truth is, we never should have left after her last chemo, but we thought she would improve when she got home.  We finally took her in due to pain and dehydration.  She was so dehydrated that her hemoglobin dropped two points after getting fluids.  The next day she spiked a fever and ran them on and off the next few days.

Due to desats after her decannulation, Abby had another sleep study in October.  Once again, it showed severe obstructive sleep apnea.  For her age, she should have had an AHI of <1 .5=".5" 50.="50." 6="6" 9th="9th" a="a" able="able" after="after" aggressive="aggressive" airway="airway" almost="almost" an="an" and="and" any="any" back="back" before="before" but="but" capping="capping" coming="coming" day="day" days="days" debulking="debulking" decannulated="decannulated" desats="desats" did="did" dilate="dilate" do="do" down.="down." e="e" effects.="effects." er="er" expected="expected" few="few" flap="flap" for="for" fter="fter" get="get" go="go" had="had" has="has" he="he" her="her" hers="hers" home.="home." home="home" immediately="immediately" in="in" level="level" meant="meant" medication="medication" more="more" nbsp="nbsp" needed="needed" night="night" not="not" november="november" of="of" on="on" open="open" other="other" oxygen="oxygen" p="p" perform="perform" picu="picu" put="put" r.="r." reduce="reduce" reducing="reducing" reinsert="reinsert" rem="rem" required="required" retraching="retraching" richter="richter" she="she" side="side" since="since" sleep.="sleep." so="so" spending="spending" start="start" still="still" stoma="stoma" surgery="surgery" swell="swell" swelling="swelling" t="t" than="than" that="that" the="the" to="to" trach.="trach." trach="trach" tried="tried" waiting="waiting" wanted="wanted" was="was" we="we" weeks="weeks" weren="weren" while="while" willing="willing" wonderfully.="wonderfully." worked="worked">
Thankfully both girls were able to enjoy trick-or-treating this year.  This was the first time they have gone and they both loved it.  We were worried about how Abby would do after being discharged the day before.  She did awesome and walked almost the entire way despite needing a transfusion badly.

We already have the Christmas tree up and Abby is so excited.  Every morning when wakes up, she says "It's Christmas Time!"  I can't wait to see her face on Christmas morning.

Abby recently had her MRI to check on tumor progression and to see if her new chemo is working.  Thankfully they showed a small decrease in tumor size.  It is a very small decrease, but it is better than no change and definitely better than an increase in size.  That means she will continue on the same chemo regimen for now.

Unfortunately, Abby had complications from the anesthesia for those scans and ended up in PICU for the weekend.  This was her first sedation without her trach in a year and a half.  Since she no longer has her trach, that meant she had to be intubated.  When I got down to recovery, her 02 levels were in the 30s and her respiration rate was in the 70s.  Without an oxygen mask, her levels were consistently in the 40s-60s, never raising above the low 60s.  Even the nasal cannula would not raise her oxygen levels.  She also had blood coming from her trach stoma.  So she ended up in the PICU on 6L of oxygen.  The doctors don't really know what happened.  My theory is that the intubation pulled off the scab from where she had a granuloma removed a week or two before and that, combined with irritation from the intubation, almost closed down her airway.  After breathing treatments, steroids, and antibiotics (they also thought she aspirated based on chest xrays), she was finally able to leave the PICU a couple of days later.

Since she has been home, Abby has been doing great.  She has been full of energy and wanting to play.  She also started physical therapy this week, so hopefully that will help improve her strength even more and will help her learn to run again.

Abby had her trach removed September 2nd!  She went in for a bronchoscopy the Friday before and had a granuloma removed.  The bronch showed that part of her airway is still covered by the flap, but they didn't think it was enough to prevent decannulation.  She then had to keep her cap on for 48 hours while in the hospital, then they removed it and we stayed another day for observation.  So right now, she has a hole in her neck where the trach was and we wait for it to close on its own.  If that doesn't happen, it will have to be closed surgically.

Abby has been doing wonderfully with her trach out during the day, but is having some problems at night.  Some night she does great with no desats, but other nights she desats once an hour.  Because of this, she will have another sleep study on October 8th.  Depending on those results, we may have to try CPAP or possibly do another debulking to remove the excess tissue.

Abby is so excited to have her trach out and has to show everyone that she meets her "new neck".

I've been thinking about doing this post for several months, but haven't taken the time to do it.  In my experience with Abby these past 18 months, here are a few things to do and not to do when a family member or friend (or their child) is fighting cancer or another serious illness.

1.  Stay in Contact
     Whether it be a phone call, an e-mail, a card or a text, stay in contact, especially when you are a close family member or a close friend.  From our experience, it is very hurtful when you go a month or more without hearing from a sibling or other close relative and it seems like they don't care.  And no, simply liking pictures and status updates on Facebook is not sufficient contact from close family.  Some family members have been wonderful and we hear from them multiple times a week.  If you do try to make contact, don't feel hurt if they don't feel like talking - sometimes you don't feel well or get busy or just don't feel like saying certain things out loud.  Maintain this contact - during the mundane parts of treatment, it is still very nice to hear from people.  A lot of times, if the only time you hear from someone is right after diagnosis or very bad news, it doesn't seem as genuine.

2.  Visit
     After having to avoid public settings for the last year and a half, it gets very lonely at home.  Please take the time to visit.  We greatly appreciate it!  Cancer isn't contagious.  Since last September, we have had a total of one visitor to the house, excluding family.  As long as you aren't sick, take the time to visit, even if it's just for an hour.  When you do visit, always call ahead.  Know that the house probably isn't perfect and there may be some different smells if the side effects of chemo are causing someone to be sick, but seeing another face is always nice.  Don't be offended if we meet you at the door with hand sanitizer and ask you to take off your shoes.  We are just trying to keep as many germs away as possible.

3.  Ask what help is needed.
     After a long day of trying to balance a sick child and a young one that is full of energy or a day spent driving back and forth to the hospital, dinner is sometimes the last thing on our mind.  The offer of a meal is never turned down.  Along these lines - ask before offering food or drink to a sick child.  We had multiple people offer food to Abby during the four months that she was not allowed to eat or drink anything.  This led to lots of tears and tantrums.  If someone is at the hospital for an extended time is going through treatment, they probably don't have much energy when it comes to yard work.  Offer to mow their yard.  If someone is immunocompromised, the grocery store is the last place they want to go - see if they need any prescription refills picked up or if they'd like someone to do their grocery shopping that week.  If there are other children involved, offer to take them for a day and do something fun - they don't enjoy being cooped up in the house either.

4.  Keep your word
     If you offer to watch kids anytime it is needed, please keep your word.  If we have asked for the help, we need it.  If you say you are coming to visit, don't leave us waiting for hours or cancel at the last minute.

5.  What not to mention
     Unless you are very close to someone and know their religious beliefs, be careful when bringing up religion.  People can get very angry at God when going through treatment.  There are many times that I don't want to hear that God has chosen Abby for a reason, that he doesn't give us more than we can handle.  Maybe we don't want Abby to be special.  I think I'd rather have her be healthy and ordinary than to see her struggle so much or, even worse, to lose her.  Also, don't bring up your child's ordinary illnesses and scrapes and bumps.  It's difficult to hear someone complain about their child's minor problems when you would give anything for that to be your child instead.

It's hard to believe, but today marks 18 months since Abby was diagnosed with cancer.  Her original treatment was only supposed to last 54 weeks, but she is still fighting.  Given her odds, we are thrilled that she is still here and pray that she will beat them and be given many, many more years with us.

It is difficult to describe everything that she has been through in the last 18 months, so I will use her Beads of Courage to try to give you an idea of everything she's gone through.

Bone Marrow Aspirate/Biopsy - 1
Days of Chemo - 101
Port Insertion/Removal - 3 (plus 2 PICC lines and 1 femoral central line)
Clinic Visits - 78
ER Visits - 9
Ambulance Rides - 3 (plus many more to and from radiation treatments)
Hair Loss - 3
Fevers/Neutropenia - 20 occurrences (too many days to count)
Lumbar Punctures - 1
Morphine and PCA - 3
Pokes - 153
Days of Radiation - 33
Tests/Scans - 66
Transfusions - 5
Tube Insertions - 4
Nights in the Hospital - 178
TPN - 1
Surgery and Dressing Changes - 86
Transfers to PICU - 3
Respiratory Treatments and Therapy Sessions - 255
Special Selection/Special BOC Beads - 42

On Sunday morning, Abby spiked a fever of 102, so we headed to Children's to be admitted.  She was complaining of a lot of trach pain inside her neck, something she has never complained about.  She didn't want to cough because it hurt, so she had a big build-up of mucous.  Thankfully we found only a sore underneath her trach.  They did a scope through her trach and everything internally below her trach site looks good.  After a few days of antibiotics and a few more fevers, we were able to head home thanks to a huge jump in her counts.  As long as she meets counts, she will be admitted for her next round of chemo next Thursday.

After a few days home, we headed in to the hospital on Thursday for round 2 of chemo.  All her chemos are now a five to six day hospital stay, depending on how late they get started.  During this chemo, she is receiving ifosamide and etoposide.  It alternates with topotecan and cytoxan.  She's tolerated all the chemo very well, so far.  The steroids have helped with the nausea tremendously, and Abby has not been sick a single time in five weeks.  That has been wonderful and has helped her feel good.  This chemo is supposed to bottom out her counts, so we are hoping that she will be able to avoid a hospital stay for fever.

Abby also celebrated her 4th birthday at the hospital.  We had a small celebration a home, where she requested a purple cake.  Thank goodness for purple food coloring!  We only hope that Abby has many, many more birthdays to celebrate with us.

So here's a quick recap of our trip to Orlando. We were gone from July 1-7th.  Alexis was able to celebrate her 2nd birthday on the trip.  I'll try to upload some pictures later.

We had a guest assistance card, a special button for Make-A-Wish and a stroller as a wheelchair tag. It was great - we got to go in the fastpass or wheelchair entrance on every ride. I think we only had one or two rides that we had to wait more than 5 minutes for and we could take the stroller everywhere - no leaving it in the big stroller parking areas. We also got to sit in either the first or second row in all the shows. Probably half the time we were front row center. The girls absolutely loved the shows.


Sunday - It took us three flights to get there. Little Rock to Dallas to Houston to Orlando. There has to be an easier way to get there. Abby did awesome. The only complaint from her was that she wanted more pretzels, so the flight attendant gave her an entire bag. Although we didn't have to wait in line for security, it was a hassle. Abby was hooked up to her feeds at the time, so the rivet on her backpack set off the metal detector. Then, because her backpack had liquid in it, she had to be swabbed for explosive residue. She cried on that part, and I don't blame her. They also had to check her stroller, suction machine, and bag of meds and feed. They didn't give us any problems with taking tons of liquids on the plane, they just had to swab it all. After we got there, we went to the Give Kids the World Village. There was so much to do there, but we were so busy, that's the only time we really explored. My favorite part was the unlimited ice cream. It's good that we didn't stay there because I had to banana splits and a shake and we only visited there four times. By the time we made it to the hotel and got checked in, it was 10:30pm and we had to be at the airport at 6am. It was a long day.

Monday - First thing Monday morning, we headed back to the village for orientation and to meet Mickey Mouse. Once it was our turn, Abby ran straight to Mickey and gave him a huge hug. I have to admit that I got pretty teary-eyed at how excited Abby was. Alexis wasn't sure what to think and didn't want to get close to him (or any other characters). After that, we headed to Hollywood Studios. The big hits were the Little Mermaid Show, Disney Jr. show , meeting Jake and Handy Manny and the Toy Story ride.. Alexis loved the Honey I Shrunk the Kids set and neither of them cared for the Art of Animation section, although they did meet Winnie the Pooh there. They also met Buzz and Woody. We cut the day short because it was HOT, so I didn't get to see Indiana Jones or any of the stunt shows. After we went back to the hotel, we just ordered room service for dinner and a cake for Alexis' birthday, then we crashed.

Tuesday - We headed to the village again, expecting to see Dora, so Abby was disappointed when it was Diego. After that, we headed to Sea World. It started out well when Abby wanted to play a game and she won a prize. Then it went downhill quickly when she saw a portrait artist and wanted to stop. We would have been happy to have her picture drawn, but she had other ideas and wanted to draw. The guy was nice enough to give her some paper, but then she sat down at an easel and started to grab the supplies. We had to tell her no and she got mad and was that way most of the day. They both really enjoyed the Sesame Street Show. After that, we went to Shamu. Alexis and I were front row, center. We got soaked! They said we would get wet, but I didn't expect that wet. It's a good thing Abby hadn't wanted to sit close because it would not have been good for her trach. Both girls went on their first roller coaster ride and loved it! They also did a few other rides and games.

Wednesday - Finally a day to sleep in. The girls enjoyed riding the monorail over to Magic Kingdom. Abby was very overwhelmed most of the day. It was absolutely packed. We started off by visiting Mickey, Minnie, and Mary Poppins. Abby was mad because she wanted cheetos and it took us an hour to find them. What a waste of time, but she wouldn't stop yelling until we found them. We hit Dumbo and the Tea Cups. We were going to go on the Goofy rollercoaster, but it broke down while we were waiting in line. I'm just thankful we weren't on it. We headed back to the room, but stopped to see Cinderella, Belle, Rapunzel, Daisy and Pluto on the way out. In the evening we ate pizza (again) and saw Tinkerbell and Rosetta, along with Arial. We also did It's a Small World, and the Flying Carpets, then it was time for fireworks. It was a madhouse. I was expecting to see a riot with people pushing through roped off areas and past workers. Lots of workers got yelled at. Seriously, who leaves a 12 yr old alone for 12 hours at Magic Kingdom. Anyway, the fireworks were great, as was the Electrical Parade.

Thursday - I think this was the best day for both girls. We headed over to Universal Studios. Right off, we saw Dora, Diego and Boots. Universal did an awesome job with the girls. All the characters came up to the girls during parades and they were the first ones to meet Dora. Abby gave them all lots of hugs. Alexis was still a little wary, but would at least go up to all the characters. Abby also decided to start using her spending money and bought nearly everything Dora that they had. Then it was on to Barney. They had a great air-conditioned play area. It was awhile before they had another show, so they visited Barney, then we went to the Curious George area and the girls rode another roller coaster. The girls both loved the roller coasters. They laughed and yelled the entire time. Then it was time for the Barney show. We got the front row again and the girls were just mesmerized. Both were clapping and dancing throughout the show. After it was over, they got a private meeting with Barney. The girls both gave him hugs and kisses. I can't dislike Barney anymore after seeing how much they liked him. We did ET and I enjoyed it, but Alexis cried through the entire thing because it was too dark, just like Peter Pan. After lunch, we did Shrek, the parade, Twister (not impressed), and the new Despicable Me, which just opened on Monday. However, on the Despicable Me, they decided that Abby was too short after we had already been seated. So they made us get up and move to the stationary seats. Abby was not happy and yelled and everyone looked at us because the show was delayed. Sigh. That night we headed to the village for Christmas. The girls sat on Santa's lap and got Christmas presents. Of course, we ended the night with more free ice cream.

Friday - We spent our last day at Animal Kingdom. Alexis slept through meeting Donald Duck, Baloo, King Louie, and Chip and Dale. By far, the Lion King was everyone's favorite. Even Leonard was impressed. It makes me wish that I could go see the musical. I was pretty disappointed by the lack of animals on the Kiliminjaro Safari and by the Nemo show. I got to ride Everest and the rapids ride. I was pretty surprised by the lack of animals. We did a few more rides and met Goofy and Pluto, then headed back to the hotel to pack. Abby didn't want to spend the rest of her money, so I headed down to Downtown Disney on my own and did some souvenir shopping for her. After the girls went to bed, I headed back to Magic Kingdom to ride everything that I didn't get to the first time around. Staying up until 1am sounded like a good idea at the time, until I had to walk back to the hotel and then wake up at 6:30 to finish packing. I have to say that Space Mountain was my favorite roller coaster, but I was disappointed by Splash Mountain. On Splash Mountain, I was not disappointed by the teenage boys riding in my log that decided the flip off the camera for their picture. They were not happy to see that their picture had been covered up. Haha.

Saturday - We made it to the airport, barely. We were too concerned with the tolls that we forgot to fill up the car with gas. A big oops. It ended up costing $9/gal to fill it up, but we didn't have time to leave to go find a gas station. Security was pretty easy again. This time we had to fly Orlando to New Orleans to Dallas to Little Rock. Yuck. I was worried about our half hour layover in New Orleans, but we were delayed by weather, so it added an hour to our layover. I haven't been in many airports, but New Orleans was pretty scuzzy and nasty. It was also teeny tiny. We made it home with all our bags by 10pm. So far, the girls have asked to go back a few times, but it's nothing like it was before the trip.

I know that this is old news to most of you, but for those who do not know, Abby's cancer has returned.  Her routine end-of-treatment scans on May 25th showed that her tumor has returned in its original location.  Once again, it has an intercranial component, only this time it is wrapped around her carotid artery in addition to putting pressure on her cavernous sinus.

Abby began radiation on June 7 and completed treatment yesterday.  She also restarted chemo on Monday.  She will go through ten rounds of chemo, each of which is a five day inpatient stay.

She has been given a very poor prognosis because the cancer returned while he was on chemo and because it is inside her skull.  It has been recommended by her medical team that we go on her Make-A-Wish trip while she is still feeling well, so our family will be going to Disney World at the beginning of July.

Unlike the first time, Abby showed no symptoms of a relapse prior to her scans.  A week after her scans, her eyelid began to droop and almost comletely closed.  It has, for the most part, reopened thanks to radiation and steroids.  She also began having pain at that same time, but it has also decreased and she is no longer requiring painkillers.  We must now hope that the new chemo takes over where the radiation leaves off.

I don't have much to add right now, other than to ask for many, many prayers that Abby is able to beat this and is given the chance to grow up.

Although Abby's done with chemo, we couldn't stay away from the hospital for long.  Just two days after leaving, we had to head back for an ENT appointment to go over her sleep study results and determine the next steps that need to be taken to get rid of her trach.

Her sleep study was greatly improved from the one in November.  That sleep study showed 30+ obstructive apneas and hypopneas per hour.  This sleep study showed that she only had nine per hour.  A huge improvement!  She also had many central apneas while she was capped, but they noted that these were nearly all after arousals, so were not of any concern.

Abby's ENT feels that most of the obstructive apneas are a result of the trach itself because it takes up such a large amount of her airway.  So he downsized her trach from a 4.0 to a 3.5 while we were in the office.  In two months, we will go back and they will downsize her to a 3.0, then she will be admitted for 48 hours to see how she does with the cap.  If she is able to stay capped for those 48 hours without desatting or showing signs of respiratory distress, then they will take out her trach!

To say that we are excited about the possibility of being a trach family for only two more months is an understatement, but, at the same time, we are trying not to get our hopes up too much because we know that many decannulations fail on their first attempt.

This post is a little late, but as of last Tuesday, May 15th, Abby is done with chemo!  This is a day that, 15 months ago, we weren't sure we would ever see.  It was very nice that Mom, April and Chris were able to celebrate with us.  The nurses threw Abby an end of treatment party, complete with a purple Dora cake - they know her so well that they didn't even have to ask what her dream cake would be.  Abby loved it all and declared it the best party ever!  I have to agree.

This has been a long and exhausting week. Abby went in on Jan. 30th for her overnight chemo. Although she spiked a fever while we were there, they drew cultures and sent her home. After that, she was not able to tolerate her feeds at all. We ended back in the hospital from Tuesday until Thursday making sure that her new GJ tube, which was also replaced on Friday, was in the correct position. We decided she was just super sick from the chemo and she went home Thursday, but not before trying to spike another fever. On Friday afternoon, she finally went up to 102 and so it was back to the hospital less than 24 hours after leaving. Her cultures never grew anything, so we came back home late last night. I'm guessing that she had some sort of infection in her trach (although they didn't culture it) because she had a lot of changes to her secretions.

It's hard to believe that it has been one year since Abby was diagnosed with cancer. Honestly, a year ago, I didn't know if she would still be with us. She is doing great right now and is NED (like remission). She has 4 rounds (12 weeks) of chemo remaining and we are looking forward to not having as many trips to the hospital.

Abby had her surgery on Monday. The surgery itself was quick - about 45 minutes - and all went well. It was everything else that went wrong. First, they gave her an IV instead of using her port. We will never allow them to do this again because she kept trying to rip out the IV. She is so used to ports that she hates IVs. Then she was awake in recovery for about 20 minutes before they allowed us back to see her. She was very upset. We are usually back there almost immediately after she wakes up. Then she just kept asking to go to her room (the oncology unit). She wasn't being admitted, so she had to stay there, which she is not used to as she's never had an outpatient procedure. Finally, she would not cooperate with vitals. When this happens, we ask that they come back in 15 or 20 minutes to give her time to calm down. This almost always works. However, the nurses in techs in recovery would not do this. They tried over and over to get her blood pressure. They were taking her last vitals before we were released when she decided that she'd had enough. What they think happened is that she held her breath. She held it long enough that she turned blue and was completely stiff and became unconscious. Then she was blue and limp. They called a code blue and came running with the crash cart. She was bagged several times before her color returned and she regained consciousness. It was a terrifying experience and I hope Leonard and I never have to witness that again.