The Hanway Family

We received the results of Abby's sleep study a few weeks ago. They showed that when she was capped, she had severe obstructive sleep apnea. She had more than 30 episodes an hour of apnea or hypopnea. Therefore, her bronchoscopy that was scheduled as a formality in getting her trach removed turned into trying to determine what the obstruction was. The bronchoscopy showed that the muscle flap has not atrophied like they expected and that it is blocking a large part of her airway near the larynx. She will need another surgery to go in and debulk the flap. Her ENT was hoping to get that done within the next month, but we don't have an date set yet. It will probably delay her chemo anywhere from two weeks to a month, depending on the timing. After she has had a few weeks to heal, they will repeat the sleep study and it should show that she no longer has the obstructive sleep apnea. At that point, we will be able to move forward with decannulation again. During the bronchoscopy, she also had a granuloma removed from her trach site, which should help a little bit with the irritation that she has felt. Her ENT is hopeful that this next surgery will fix a lot of her gagging and vomiting problems because he thinks the placement of the flap is triggering her gag reflex.

Abby has finished two days of her five day chemo. Although we are spending New Year's Eve in the hospital, we are very thankful that we were able to spend Christmas at home. Both the girls had a great Christmas and loved ripping into all the presents.

Abby had her scans two weeks ago while we were in for her last chemo. They showed NED (No Evidence of Disease). This is what most people would call remission, but that is a leukemia term while NED is for solid tumors. This is great news because it means that Abby is cancer-free!

Abby had an appointment with her ENT last Thursday. We got some more information about what needs to be done in order for Abby to be decannulated and her ENT wants to continue to move forward with these steps. He wanted to have this done during her admission next week, but it couldn't be scheduled that quickly. So on December 29th, Abby will be admitted for a sleep study in which her trach will be capped overnight. The following day, she will have an ML&B done to look at her airway and make sure that the swelling from the new tissue has gone down enough so that it doesn't block her airway while asleep. Following the bronchoscopy, she will then be capped for 48 hours while in the hospital. If all goes well, then she should be able to be decannulated. The catch is that it takes four weeks to get the results of the sleep study, so she doesn't have an appointment scheduled until March, so I can't get my hopes up about decannulation happening before then.

I didn't realize it had been so long since I updated the blog. Abby is currently in the hospital for her 5 day chemo. This is day three and it has finally hit her. Although it's 4pm, she has only been awake for an hour or two today. Other than the chemo, things have been relatively quiet. The good news is that Abby is now halfway through her chemo plan, so only 27 weeks left!

Sadly, Maddie lost her battle with rhabdo on September 21st. It has been hard on everyone. I did not enjoy having to explain to Abby why she couldn't see her best friend anymore. It's not an easy concept to explain to a three year old, so I don't know how much she understood. Within less than two weeks, two other children here passed away in addition to Maddie. Childhood cancer is awful!

Alexis had her 15th month check-up on Tuesday. She's a big girl at 32.25in (93%) and 25lb8oz (85%). Of course, her head is at the 25th percentile. My kids just have small heads. The pediatrician says that she is doing great and has an excellent vocabulary and she was a champ at her shots.

We are gearing up for the CureSearch walk for childhood cancer research. It is next Saturday, so hopefully I will get some pictures of the team. We are the Rhabdo Warriors and so far we have raised almost $2,900 for research.

Please pray for Abby's best friend Maddie. Her latest MRI was not good and her tumor is growing rapidly in her brain. She was placed in hospice on Wednesday. Maddie and Abby are alike in so many ways. They both have rhabdo in about the same area, they both have trachs and feeding tubes and their names are similar. Maddie and her mom have been a huge source of strength and information for us. My heart absolutely breaks for them. Please pray that they are able to keep her pain-free, comfortable and happy during this time. Also pray that her mom and fiancee are able to plan their wedding quickly. Their wedding was postponed by Maddie's diagnosis last May and it is very important to them that Maddie is here to celebrate this important day.

I also ask that you pray for Joel Smith and his family. Joel is five years old and passed away early Tuesday in the room next to ours. This was a very emotional time, knowing what was happening only inches away and praying that we never have to know what it feels like to slowly lose a child.

We are very thankful that Abby's last MRI showed no evidence of disease! This is wonderful news and makes us feel so much better. She was just released from the hospital on Tuesday after a five day stay for bleeding, vomiting and fever. She will go back this Friday for five days of chemo. We are hoping that chemo goes better than the last two times where it has hit her hard and it takes over a week for her to start feeling better.

In other news, Alexis is officially walking! She had been taking six to seven steps, but is now walking everywhere.

We have been enjoying some wonderful time at home. Abby has been feeling great! The biggest news is that she started walking again about a week and a half ago. Since then, she has been spending most of her days up playing. She wears her cap on her trach most of the time, so she only needs suctioning once or twice a day. Her vomiting is also down to once or twice a day. The other good news is that she has started using the potty occasionally. It was recommended that we not work on re-potty training while she was undergoing treatment, but since she's asking, we'll go with it.

Since the last post, Abby has had two rounds of chemo. The first was irinotecan, which was new to her. This was given five days in a row and was pretty easy on her other than horrible diarrhea. On Friday, she got VAC (vincristine, dactinomycin, cytoxan), which was fairly rough on her this time around. She has been pretty sick since then, so hopefully that will get better over the next few days.

On Friday, Abby also had another MRI. We don't have the results yet, but are praying that it shows no evidence of disease (NED). In order to get her trach out, one of the steps is to have an MRI showing NED. One of the other steps is a successful swallow study. Hopefully she will have one in the next week or two, though we feel she has more work to do before she will pass this step.

The other night, Abby was feeling so good that she didn't want to go to sleep. As we were laying in bed, she told me, "I can't go to sleep. I have hiccups." She then proceeded to fake the hiccups. It was the cutest thing ever. I started laughing and she started giggling. Later, as I turned over to go to sleep, she started tickling me, saying "Tickle, tickle, tickle". I reached around and tickled her back and she broke out in the biggest belly laugh. I love staying up late with her when she is in a great mood like that. It is the best thing ever to hear her laughing again.

Alexis has started giving the sweetest kisses. When they're not fighting, Abby is always giving Alexis hugs and Alexis is giving her kisses. Alexis has also learned how to blow kisses. She has lots of words as well. She can say: hello, bye, bath, more, banana, no, mama, dada, balloon, and others.

Abby was released from the hospital on July 8. We enjoyed a wonderful week at home. Last Friday, she came back to the hospital to get the last of her stitches removed and then she was admitted for her first round of five day chemo using irinotecan. So far it has gone very smoothly and she will be released tomorrow.

Both the girls have celebrated birthdays this month and I will try to post later with some pictures and their stats from their yearly checkups.

I apologize for not updating more regularly. We have had problems with the internet and Abby has been giving us trouble.

Unfortunately, Abby has had to return to the operating room twice in the last week and has also had general anesthesia twice more for other procedures and tests.

Since moving out of the ICU, Abby has had two infections in her face. The first one caused a great deal of swelling so that her incision started to separate. It never completely came apart, but it opened a wound that was never able to heal properly. This led to a yeast infection, which is very problematic. Yeast travels to the port and doesn't leave. Her port had already stopped functioning due to a probable clot, which is a whole other story, so her port was removed. She was sedated on Thursday to get a PICC line so that she could get rid of her IVs but still have access and she will not be able to get a new port until her infection is cleared up. We are still waiting on the identification and sensitivity (to medications) to come up with the best treatment plan for the yeast. Yesterday, Abby got her finger into the hole left open when a drain was removed on Thursday (actually, it wasn't removed, Abby pulled it out herself). The drain was inserted during Tuesday's surgery, which I'll talk about later. Once she got her finger in the hole, she simply pulled and her incision opened all the way almost from her ear to her chin. As it is almost a month post-surgery, this should not have happened. However, because of the prior infection and her poor healing due to radiation damage, the incision was not nearly as healed as it should have been. So she went in for emergency surgery yesterday afternoon to clean out the wound and stitch it back up and was also started on powerful antibiotics to prevent infection from having such a large open wound and Abby's hand being inside it.

So on to Tuesday's surgery. About two weeks ago, the incision on Abby's belly started to open. The stitches were starting to dissolve and there was too much tension and it just pulled apart. It had started to heal on its own by being packed with gauze in a wet-to-dry dressing so that there was always fresh tissue to grow together. Overnight, however, it developed very deep holes in two places. These holes were so deep that you could see the blue mesh holding her intestines into place. This caused her to go into surgery as well to get it cleaned and stitched up again.

Abby has also had a few CT scans looking for fluid and possibly pockets of infection in her face because of all the swelling/redness/fever that she'd had. They found a few small pockets of fluid, but nothing to be concerned about and these pockets have been shrinking.

We are very thankful that through all of this the flap has continued to look good. It still has excellent blood flow and has shown no sign of infection.

A week ago, Abby had her first swallow study, which would give her the opportunity to eat and drink again. Sadly, the was unable to swallow anything. Her tongue was making movements and she was trying to swallow, but she could not get coordinated enough to move liquid to the back of her mouth to have it available to swallow. Since yesterday's surgery, we have noticed a large decrease in the amount of drooling that she has been doing and actually asked for something to eat and drink.

In other big news, Abby's trach was capped on Friday. This means that she is breathing completely on her own through her mouth and nose. This is a step towards getting out her trach. Once she is able to successfully eat and drink without any aspiration, her trach can be removed.

After "sleeping" all weekend, today has been a big day for Abby. The first thing they did was to pull out the trumpet in her nose, which made her very happy. Even in her sleep, she has been pulling at it. Next, all her drains were pulled, with the exception of the one in her belly. That one should come out tomorrow. After one final listen, the doppler was pulled out and her stitches removed. They also took out her arterial line and her femoral central line should come out this afternoon.

Sedation-wise, she was taken off Precedex this weekend because it kept dropping her pulse into the 50's and raised her blood pressure. They discontinued her Versed, cut her morphine by 3/4, decreased her methadone to twice a day, stopped another drug and may take off her clonidine patch. Only the ativan remains the same. I am praying that withdrawal isn't too bad.

She's being weaned off the ventilator and hopefully she will be out of PICU by Wednesday. Everything else is going well and the doctors couldn't be happier with her progress. She does have a slightly collapsed lung, but it's improving.

I'll have to say that it is nice to have her ask me to sit next to her again.

Sorry it has taken so long to update after surgery. Everything went well. Abby was taken back just after 8:30. Surgery started just before 1:30. It took anesthesia almost two hours to get everything set up. Once they got her sedated, she had to get a new central line that went in through her femoral vein, two more IVs in her feet and arterial line in her arm. The new IVs were to be able to give her lots of blood and fluids quickly in case she started losing a lot of blood from her carotid artery being hit (which didn't happen).

Around 1:00, Dr. Richter (the ENT) came out and said that the tumor had been removed up to her skull base with negative margins. They were waiting on pathology on a piece from her jaw to see if there were any cancer cells in it before removing any of the jaw. At that point, she had lost part of the nerve to her right cheek, but it was already mostly gone before surgery because of the tumor. She also lost the nerve to her right lower lip, but the nerve to her tongue had been preserved.

About 3:30, neurosurgery finished their portion. They cut about a half dollar size piece of skull removed while they did the work. The tumor had made a small hole in the base of the skull much larger. The entire infratemporal portion of the tumor was removed. The neurosurgeon cleaned out hole that had been worn and drilled some holes in the base of the skull to make it easier to attach the flap for reconstruction. Unfortunately, she lost her V3 nerve so she lost all sensation to her right cheek, right lower lip and right side of the tongue. They felt there was too great of a risk of cancer cells remaining in this nerve because it was the one that was the pathway from the lower face up into her skull.

After neurosurgery finished, the ENTs returned to do a little more work. They ended up removing about 1/4 of her jaw because there were a few cancer cells in the sample and because it was so damaged already from the tumor and most of its blood supply had been damaged.

Reconstruction began about 4:30pm and ended around 11 pm. They ended up using muscle and skin from her belly to do the reconstruction. It took a little longer than planned because the carotid artery and jugular vein were used as the flap's blood supply and both were damaged by radiation, which made it more difficult to connect them. She ended up losing a lot of tissue around her epiglottis, so she will have more swallowing problems for awhile, extending the need for a trach until she successfully learns how to swallow again with no aspiration. They decided to hold off on reconstructing her jaw with bone for a year or two. There were several reasons for this.

According to the surgeons, her 5-year survival prognosis improved immensely today and they feel that any remaining microscopic pieces will be successfully treated with chemo and she will live a long cancer-free life.

We were finally able to see Abby a little after midnight. She looked well considering what she had just gone through. She had several hundred stitches and is swollen, but she is not huge and has very little bruising with the exception of a black eye. The biggest shock to us was the incision in her belly. She lost half of her abdominal muscles, so she only has a 3-pack instead of a 6-pack (doctor's words). Her belly incision is approximately twelve inches long and her belly button was moved over to the point that it is almost in line with her right nipple, but that should be something that is easily fixed in the future.

She has been doing well since surgery. She has been sedated the entire time since surgery but has woken up several times to the point of answering yes and no questions and pointing to the door. For the most part, they have been successful at keeping her asleep, which is good. I'll try to update sooner whenever something significant happens.

Things have been pretty quiet around the Hanway household. We have been enjoying our time at home and it has been wonderful not having to go to Little Rock every week. Abby has been going to physical therapy twice a week and is improving. She is able to take a few steps unassisted, but doesn't have the confidence to try very often. It is a huge improvement to not hear her say, "I can't walk yet" every time we try and get her to stand up. She can climb onto the couch and chairs on her own again and even managed to climb onto the counter height kitchen chair on her own.

Alexis is doing wonderfully. She is crawling everywhere and cruising along the furniture. She is starting to get daring about the size of gaps she will go between. Yesterday, she climbed into the kid sized rocking chair that Leonard's grandpa made and stood up. She got a little scare when it almost toppled over backwards and she hasn't tried standing on it again...yet. We have started trying finger foods other than puffs and yogurt melts. She loves the real food and doesn't want much to do with purees anymore. It's hard to believe she will already be a year old in a month.

Last Thursday, we made a trip to Little Rock to meet with the surgeons who will be performing Abby's tumor removal surgery on Tuesday, the 7th. The first step of surgery will be to remove the portion of the tumor that is not around the brain. There will be three ENTs working on the tumor removal and, even then, it is expected to take four to five hours. They will have to cut the skin, starting at the hairline in the middle of her forehead, then follow it all the way around the side of her face down to the center of her neck. The will then dissect out the facial nerve and fold it back along with the skin to expose the entire right side of her face. Even with keeping the facial nerve separated out, there is still the possibility of nerve damage because some of the extensions of this nerve go through the tumor. They will have to cut some of the bones of her face to get to all of the tumor and those bones will be put back into place with dissolvable plates. She will likely lose some of her jaw because of it being eroded away by the tumor or the tumor is embedded in it. She will likely lose a large part of her masseter muscle, which gives her chewing power. This is where most doctors believe the tumor originated and where the most damage is.

Next, the portion of the tumor inside her skull will be removed. The head of the neurosurgery department will be performing this portion of the surgery and we do not know how long it will take. A portion of her skull will have to be removed in order for the tumor to be removed. The parameningeal part of the tumor is relatively small - 2cmx3cm - at least compared to the rest of the tumor. Thankfully it is only pushing the brain out of the way and has not infiltrated the brain. The neurosurgeon feels that this portion of the surgery will be relatively simple. Once the tumor has been removed, the piece of bone will be put back into place.

The third and longest portion of the surgery will be reconstruction. This is expected to last about 8 hours. A free flap reconstruction will be done. Muscle will be taken from either her belly or her thigh and attached to her face to replace muscle that has been removed and to add stability to what remains. If bone is needed, it will come from the fibula. The fibula is the non-weight bearing bone of the lower leg. If parts of this bone are taken, she will be unable to play contact and intense sports because the leg will always be weaker. She will still be able to run, ride her bike, and things like that. This portion of the surgery takes so long because the arteries and veins will have to be reattached. Basically, it is like reattaching a severed finger. Her pharynx and palate will also have to be reconstructed and she will have to learn how to swallow again. She will still be able to chew, but it will be a little more difficult on her right side because the muscles won't be as strong.

After surgery, Abby will be kept sedated for several days so that she doesn't pull anything loose or detach anything in the flap. Blood flow to the flap will also be monitored hourly for the first seven days to watch for blood clots. There is about a 10% chance of clots. About 50% of the time, he is able to repair it, but the other 50% of the time, the reconstruction has to be redone. If everything goes well, she should be released in about two weeks. She will also restart chemo before she leaves the hospital.

Please keep Abby in your prayers the next several days, as well as our families for safe travel as they come to support us during Abby's surgery.

And now for pictures.

Abby had a CT scan and MRI last Friday. The CT scan showed that her chest, lungs, and abdomen were all clear. The MRI showed shrinkage in the entire tumor! We don't yet know if it was enough shrinkage to postpone surgery again. The tumor is still around the brain, but is smaller there.

We have been enjoying our time at home with the exception of Abby being unable to walk. She has been doing physical therapy twice a week and can at least stand now. She can take steps with assistance, but so far has not taken any without help.

She enjoyed a visit by her favorite teacher, Mrs. Lisa, on Sunday and has spent time with both of her grandmas, whose help we very much appreciate.

Friday, we were coming through Nashville at the start of the Relay for Life, so we made a quick stop to meet Lillie, who is a three year survivor of rhabdo. It was great to finally meet her and her family and to see someone else who has beaten this.

Abby was scheduled to go into surgery this week to remove her tumor, but it has been pushed back until June 7 due to the pathology results from the debulking she had almost two weeks ago. The pathology showed that there were very few live rhabdo cells in the piece that was removed and that most of it, in fact, was either necrotic tissue or inflammation. That is great news! It surprised everyone, including the doctors. So now the plan is to do another round of chemo, which she started on Friday and then to do another set of scans. If the tumor has not shrunk significantly since the last MRI, then they will do surgery on the 7th. If there is significant shrinkage, then surgery will be postponed again and chemo will restart.

We have been home since two days after her debulking, with the exception of one night for chemo. It has been wonderful and hopefully we will be able to avoid any more stays until June.

Abby came through surgery wonderfully. They were late getting started, so it was nearly 4:00 by the time they took her back. She was out around 7 pm. They took more than a golf ball sized piece of tumor. She is in a fair amount of pain today, but we have been able to keep her comfortable and she has wanted to get out of the room some. Thankfully, she has not had a single gagging/coughing/vomiting episode today, so surgery has accomplished what we'd hoped.

Her next surgery is scheduled for the week of May 9th, though we don't know the exact date yet. This surgery is expected to last 12-13 hours and will involve moving tissue from another part of the body in order to support the structures that are left due to the large size of the tumor. We will update with more detail as we get it.

Just a quick note that Abby is scheduled for surgery at 2:30pm tomorrow. Because they are unable to get her in for her removal surgery this week, she will have a debulking done to remove the portion of the tumor in the back of her throat in order to make her more comfortable. We are still hoping that she will be able to have her removal surgery next week, but it is proving difficult to get everyone (ENT, neurosurgery, plastic surgery) coordinated, so there's no telling when it will happen.

Please pray that Abby comes through tomorrow's portion of the surgery well and has minimal recovery time.

We have most of the results back from Abby's bronchoscopy. There is no sign of fungus, which is great news. Unfortunately, the cloudy secretions in her right lung were found to be aspirate. This was because some of the organisms that were found were full of iron and lipids, which meant that it was from her feeds.

On Thursday, she had a g-tube study done. This was done to determine at what point she begins to reflux. It showed that at 60 mL, she refluxes halfway up her esophagus. Because her feeds are 180 mL, she definitely refluxes all the way to the top of the esophagus. Due to this, her feeds were discontinued and the doctors told us Abby was not allowed to eat or drink anything, no matter how thick.

Because they discontinued Abby's feeds, she was not receiving any nutrition. The options were to put her on TPN or to convert to a G-J Tube. For TPN, she would have to be hooked up through her port 24 hrs/day when we go home. That is not an option, so her G tube was converted to a G-J tube. This means that she now gets fed directly into her intestines and will eliminate all the vomiting of feeds. Right now, she is being fed 24 hrs/day through the G-J tube, but we are hoping to work down to 12 hrs/day.

Really, the cause of her vomiting is the tumor and the vomiting won't improve until she gets her tumor removed. As of right now, the plan is to remove the tumor either this coming week or the first week in May. We feel that it needs to be this week because vomiting 8+ times a day in addition to the hours of coughing and gagging that go along with that just is not an option. Her surgery will probably last around 12 hours and will involve at least ENT and neurosurgery, but possibly other disciplines.

Please continue to keep Abby in your prayers because she is not dealing well with all the vomiting and coughing.

Abby came through the bronchoscopy like a champ. It went well with no complications. Her left lung was clear, although they noted she still had bronchomalacia on that side. Her right lung did not have any obvious signs of infection other than cloudy secretions. These were sent off to the lab and we are awaiting the results. The doctors feel confident that the tests will show some type of infection and that we will be able to find the right medications to treat it.

The good news from the oncologist is that she's no longer the sickest kid on the floor. However, we may still be looking at several additional weeks of hospitalization while they get the infection under control.

Tonight the tumor board meets to discuss Abby's case and hopefully we will get a better idea of what the plan is regarding her tumor and its treatment tomorrow.

Abby did not have a good weekend. We were all set to go home on Saturday morning because she was finishing her last dose of the 10 day course of antibiotics. On Friday night, she started spiking a fever. She stayed at 104 and 105 most of the weekend and the Tylenol would only take it down to 102. Because she's been on antibiotics for so long and her history of fever with no cause over the last two months, they called in the Infectious Disease doctors. Their thought is that she has a fungal infection in her lungs and that the tumor growth in the back of her throat is also the result of a fungal infection. They sent a lot of blood work off this morning to look for different types of fungus.

In addition, they also want to do a bronchoscopy to take a visual look at her lungs and to take samples to send off to the lab. If all this shows that it is a fungus, it will take several months of anti-fungal meds to get rid of the infection.

Although it's not common to have a fungal lung infection, it's also not uncommon to see them in immunocompromised kids like her.

We received the early results of Tuesday's MRI. We know that the tumor showed significant shrinkage in the upper areas, but we don't know if it is down away from the brain. The lower area, as we already knew, is still growing. I don't expect to hear anything else until the tumor board meets next week to discuss her case, but I do know that removal is one option that will be discussed.

Her ENT has already said that removal is the path that he would like to take. He, along with a neurosurgeon, would perform the surgery. I don't want to get my hopes up yet about being able to remove the tumor, but to do so would be an unbelievable weight off my shoulders. It will be a long wait until next Friday.

We are currently on our second hospital stay since we were able to go home. Of course, both hospitalizations were for fever. She has some infection in the upper lobe of her right lung, so she's being treated with antibiotics, inhalers, and more chest percussion therapy. Thankfully they are using a vibration machine for the CPT this time and it is going so much better than the bopper. This last fever was the first one to scare me because she also had a lot of thick, yellow drainage and was having a lot of trouble keeping her oxygen saturation even in the low 90's. So this time we all made the trip to Little Rock. Tomorrow will mark a week that she has been in the hospital this trip. The last one was only two days.

I am thankful that Abby's oncologist came on call on Saturday. This is the first time that we have seen him in over a month so he is doing some extra testing. She finally got a blood transfusion because she was severely anemic and she seems to be feeling much better after that. Yesterday she also got IVIG again to help protect her against viruses. With the exception of one fever, she didn't have a reaction to it this time.

Abby had an echocardiogram today because her heart rate has been high ever since she got her trach. Pre-trach heart rates were around 110 while her post-trach rates are 150's and 160's. I am glad to report that her echo came back normal.

We also had ENT look at the tumor breakthrough that we have known for a few weeks had happened. There may be some things to come out of this, but for right now, she will be having an MRI tomorrow morning and we will go from there. We are hoping that she will be released from the hospital tomorrow and that her infection will continue to clear up and the fevers will stop. It would be really nice to spend a week at home - something that has not happened in the last 11 weeks.

Alexis had her 9 month check-up last week. She is doing wonderfully. She weighed 21lb 8.5oz (90%) and was 28.5in (75%). I can't remember her exact head measurement, but it was in the fifth percentile. For some reason my kids just have small heads.

She is doing well in all areas. She is close to crawling and can drag herself forward on the ground. She is starting to pull up on everything and is trying to cruise around a little bit. She's still pretty wobbly and I don't expect her to start walking any time soon.

The day that I never thought would come has finally arrived. Abby finished her radiation treatments on Wednesday and on Thursday night, Abby was released from the hospital. We drove home that night, not wanting to spend another night away from home. We are so grateful to be back home, though we are adjusting to a new normal.

Abby now sleeps in our bed so that we can watch her monitors and make sure she stays hooked up to all her machines. She is hooked up to a pulse ox whenever she is sleeping or we are driving. At night, she is also attached to a mist collar to help deliver extra humidity to her lungs. This has an air compressor attached to it, so it's fairly loud. She also has a portable suction machine that goes every with us and it is very loud. Luckily it hasn't woken up Alexis yet. The last large piece of equipment that she has is a portable oxygen tank to use in case of emergency.

Unfortunately, Abby has atelectasis right now. This means part of her lung is partially collapsed. They believe this was caused by the fast, shallow breathing that she has been doing since her surgery. We are hoping this is what has been causing her high heart rate and fevers. We are doing chest percussion therapy to help this portion of her lung expand.

Last Tuesday, Abby had a follow-up with her opthamologist and he was very happy with her right eye's progress, even without doing any patching while she was in the hospital. At times, her right eye is fully open. It is tracking with her left eye, but does not have the same range of motion as the left one yet.

We will return to Little Rock next Friday for overnight chemo and will continue to go to Little Rock every Friday, plus numerous other appointments.

In preparation for going home (possibly next weekend), we must set some rules for visiting our house. These rules are to protect Abby, so we must require all visitors to follow them. Nearly all these rules are common sense and come from the website http://www.tracheostomy.com/.

• Give advance notice of all visits.
  
  
• Do not visit if you have had or have been in close contact with someone who has had a fever or any sort of illness (intestinal, cold, etc.) in the last three days.
  
  
• You must use hand sanitizer or wash your hands with soap and water when you first enter the house and any time you use the restroom, sneeze, cough, eat, etc.
  
  
• Take off your shoes when you enter the house.
  
  
• Kleenexes are single use only. Do not use them more than once.
  
  
• Do not cough or sneeze into your hand or into the air. Please cover all coughs and sneezes with your arm then promptly wash your hands.
  
  
• Absolutely no smoking on our property or before you visit.
  
  
• No strong perfumes or other strong scents.
  
  
• No items that shed excessively.
  
  
• No latex balloons.
  

If there is anyone in the DeQueen area that is proficient in tracheostomy care (suctioning, changing trachs, dealing with mucous plugs, proficient in trach modified CPR) and would be willing to babysit if the need arose, please leave a comment here.

Abby is currently in PICU after having surgery to give her a tracheostomy. We were hoping that this would never happen, but unfortunately it has. On Tuesday, the anesthesiologist at radiation had trouble intubating Abby. He felt that the tumor had grown overnight. We met with the ENT the next day and he agreed that a tracheostomy was probably needed. Her airway was not compromised, but the problem comes when intubation is needed because of the tumor's size and location. Surgery was scheduled for Friday morning.

She did well in surgery. After looking at the tumor, the ENT actually thought that the tumor was smaller than it was during her debulking, but that it may have shifted locations slightly. This would be good news if it means that the tumor isn't growing.

The tracheostomy is going to be a huge life change. We won't be able to leave Abby with anyone who is not experienced in tracheostomy care. There is an entire checklist of things in which we must be proficient before leaving the hospital such as suctioning, changing the trach tube, trach modified CPR and general trach care. There is a huge bag of things that must be with us at all times. Right now, I feel like I won't be able to sleep at all while she has this.

Thankfully, Abby will be able to have a special valve on the trach that will allow her to talk. I don't know what I would have done if she couldn't talk at all the entire time she had the trach. She will also be able to eat and drink normally.

The doctors keep emphasizing that the trach is not permanent, but that she will have it until she has surgery to remove her tumor.

We are looking at about a week-long hospital stay in the PICU, which is a very stressful place. We are hoping that this will be her last non-routine hospitalization for awhile. Radiation has been suspended from last Tuesday until probably next Wednesday, so we will hopefully complete radiation the week after that.

Let's hope the fourth time is the charm. After Abby's admission to the hospital on Monday, we were released on Wednesday. They never found a cause for the fever. On Thursday morning, she developed another fever. It was staying right around 101, so we decided to just watch it at home. Right at bedtime, however, it began to go up again very quickly and went up to 102.4. At that point, Alexis was asleep so Leonard took Abby to the ER on his own while I stayed with Alexis. When they reached the hospital, they didn't show her to be running an axillary fever, but her heart rate was in the 180's. When they took her temp rectally (a big no no for chemo patients, so I don't know why the did it), she was running almost 102. Based on her heart rate, she was admitted to the Intermediate Care Unit, which is a step down from ICU.

On Friday, they went ahead and did radiation, thankfully. Her fever also broke and never returned. She has been having a lot of problems with secretions caused by both the radiation and the breakdown of the tumor, so they decided to keep her until Sunday to watch her breathing.

We also got the results of last Wednesday's MRI. It contained both good and bad news. The good news is that the tumor is shrinking, overall, especially in the eye and brain area. It is still up in the brain cavity, but is smaller in size overall. The bad news is that the tumor still shows growth in her airway area. We don't know the cause for the growth and her oncologist and the radiation doctor are supposed to be coming up with a plan for how to treat this. Abby only has seven more radiation treatments out of the original 28, so we don't know if they will extend radiation or increase the dosage in that area. Hopefully they will come up with a plan in the next day or two. If it comes down to it, they could always do a tracheotomy, but we aren't to the point of discussing that option yet.

We are hoping to avoid any fevers for quite awhile, especially since her counts are good and they have been unable to find a cause. Alexis also started to come down with a cold today, so we will have to try and keep some distance between her and Abby.

On another good note, Abby's speech continues to increase. The nurses were even able to hear her talk some this stay. They even heard words other than no. It is so nice to have her answer questions about what she wants and where she hurts. I love hearing some of her phrases again such as "What's that? That baby." Then we ask what baby's name is. Her response is always "Alexi". Of course I'll also never tire of hearing the word Mommy.

Alexis finally had her first tooth come through yesterday, a day short of her 8 month birthday. We knew she was teething because we could see the tooth under the gums, but we didn't expect it to happen so quickly. She never had any of the fussiness or runny diapers that Abby had with her first teeth. I didn't even know that the tooth had come through until she bit down on my hand and it was sharp. I'm guessing that number two will come through soon as well.

Well, Abby has been back in the hospital since Monday evening. She spiked a fever again on Monday afternoon. It was up to 101.3 when I took it at home, but by the time we made it to the ER, it was down to 100.2 and down to 98.8 when we got up to the room. Her white blood cell count was high, which could either mean infection or it is the Neulasta working. It is probably the Neulasta because she's not neutropenic and her counts are good. She will hopefully get out today because she was fever free all day yesterday.

Yesterday was actually a really good day for Abby. For the first time ever, she actually wanted to go to Camp Wannaplay and they had to kick her out because they were closing. It was wonderful to see her playing and having fun.

Yesterday also saw our first eye appointment. She did great and was even playing with the doctor until it came time for the actual exam. The eye itself looks good, but they still don't know if she has vision in her right eye. We are supposed to patch her left eye for 1-2 hours a day and see what she does. They said she may open her right eye more or move her head to try and look out of it if she does have vision. If she doesn't do either of those, then she either doesn't have vision or she's simply not able to open that eyelid enough to see out of it. We go back next Tuesday for a follow-up.

Today Abby has her MRI to go along with her 20th radiation treatment. We're excited to see how the tumor has changed because it definitely seems to us that it is shrinking. It will probably be Friday at clinic before we get any results.

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.

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.