The Hanway Family

We heard back from the tumor board regarding their recommendations for Abby. They recommended surgery to remove her tumor rather than a biopsy. This will be major surgery requiring a craniotomy as part of her tumor is wrapped around her carotid artery and pressing on the collection of veins that drain all the blood from her brain (cavernous sinus). Thankfully she won't need all the reconstruction that she had after her last resection, though the rest of the surgery will be very similar. We don't yet have a date for surgery because of coordinating with a neurosurgeon from UAMS, her ENT, and possibly a microvascular surgeon from UAMS, but if it is more than a couple of weeks, she will have another round of chemo before surgery. She will also need more chemo after surgery but the length and type depend on what the pathology show. She has an MRI scheduled for Friday and that will help neurosurgery plan out their portion of the surgery.

Abby's been feeling great and even had a little bit of hair grow in.  It's starting to fall out again, but she was so proud of it.  She kept rubbing her head and pretending to blow dry it.

I have to share a funny story from the girls that happened yesterday.  Alexis ate Abby's cupcake that was sitting on the table.  When Abby discovered this, she told Alexis that she was going to call the police, then got out her pretend phone and told them what Alexis had done.  Poor Alexis was beside herself thinking that the police were going to come get her.  It was so sad and so funny at the same time.  I don't know where Abby came up with the idea of calling the police.  We've never mentioned the police before, other then mentioning to them that my brother is a cop.

Abby was admitted to the hospital on January 3rd for what was supposed to be her last chemo.  We went in expecting the worst news we could imagine.  Just a few days before Christmas, we found a mass of some sort inside her mouth in her right cheek.  Her oncologist had told us to try not to worry about it, but who wouldn't?  After two weeks, the mass had not changed at all, so we were feeling a little more positive that it had not grown.  After three of the oncologists looked at it, none of them had ever seen anything like it.  They went ahead and ordered a CT because they were still worried about tumor progression.  Abby did awesome and did not require any sedation.  The good news is that the mass in her mouth is not a tumor, it appears to be a very large bruise, probably from biting her cheek one day while she was playing.

The bad news is that the CT showed that her tumor has not shrunk at all since treatment began.  This is very unusual, especially on such powerful chemo.  Her oncologist fears that her tumor is not dead.  Therefore, instead of doing a PET scan to look for tumor activity, she will be having another biopsy.  Her ENT will do the surgery, but we won't know if it will be major surgery or a needle biopsy until after they discuss her case in tumor board next Wednesday.  Tumor board is where the oncologists, neurosurgeons, ENTs and other specialists get together to discuss new diagnoses and difficult cases.  This will be the fourth or fifth time that her case has gone before tumor board.  Unfortunately, tumor removal is not an option at this point because her tumor is wrapped around the carotid artery.

Please pray that the biopsy shows her tumor is completely dead and that Abby recovers from surgery quickly and with no complications.  If the biopsy shows that the tumor is still alive, we will have to explore new treatment options for Abby.  At this point, her only treatment options would probably be clinical trials.

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