Week 2

Sunday, May 16th-

8:00pm--Is this really my life?  Am I really sitting here in a hospital room while my daughter is in isolation?  To visit my daughter, do people really have to put on isolation gowns, gloves, and face masks to enter her room?  Sometimes, I think I must be dreaming because this can't possibly be true.  Only two weeks ago, everything was normal.  Now, what is normal?   This, I guess.  Huh. 

Sorry, I'm in a bit of a sour mood this evening.  Allie's new rash is worse now, so she has to be isolated even more.  It looks different than the one she had from the amoxicillin (that is what they have officially said caused the first rash--she is allergic to anything in the "cillin family").  They aren't sure yet whether her rash is due to something viral in her body or a reaction to one of her many medications.  She also has some red blotches that are due to capillaries that burst right beneath the skin. This is due to a low platelet count and usually goes away when counts rise.  They are running tests, but until they know for sure the cause of the rash, she has to remain in isolation.  Unfortunately, that means that I am in isolation too.  As I mentioned above, anyone that comes into our room has to be in full garb.  I am the only exception to this rule.  I have to wear that outfit when I go out of the room.  This insures that any germs that I might come in contact with go on the gown, not my clothes.  Then, I am still able to hold the baby.  In her room, I can just be in a face mask.  They want me to limit the amount of time that I spend in the waiting room or even in the hallway.

I visited with some friends from Rice that came to visit this afternoon, but that has been my only time out of this room.  Right now, Andrew is having dinner with his mom, Jeremy, my mom, our friends Mike and Angela and their boys Josh & Joey down in the cafeteria.  They picked up Pei Wei, brought me my meal, and went down to hang out together and have dinner.  I don't want to say I'm jealous, but in a way, I am.  I am such a social person.  To be locked in this room is miserable.  Andrew has a different feeling about the situation.  He is jealous that I get to spend so much time with her, touch her with my bare hands, and see her all the time.  He doesn't get to do those things.  So, our situation isn't perfect for either of us. 

Through it all, Allie has remained such a strong person.  Andrew just walked back in and gave me his fortune cookie from tonight. He thought it was more appropriate for Allison because it says, "You are strong and brave; use your strength to pull through."  Sounds about right to me.

As for the rest of her day, her condition has been stable besides the rash.  Her platelet count was a very low 7,000.  A normal count would be 150,000 to 300,000 for a well person.  She had to have a platelet transfusion this afternoon.  Even with her rash, she kept that beautiful smile that I love so much.  She only fussed when she had eyedrops and when she was ready to sleep.  Other than that, her spirits were high.  She started to cry after having been messed with a bit by her nurse, but immediately stopped when Andrew walked in the room. For him, a big smile was definitely in order--she is such a Daddy's Girl!  I love it though.  Nothing makes me happier than watching the two people I love most in this world loving on each other. 

Here are a few pictures of yesterday and today. 

The beginning of her rash on Sat. evening.	The two loves of my life--look at how much their eyes look alike!
Staring down her Papa Bill-my mom's boyfriend	Her belly with her rash, but it doesn't seem to bother her at all.

Saturday, May 15th-

9:20pm--I feel guilty, but my mom is staying with the baby tonight.  Andrew and mom are going back to work on Monday.  I will be living at the hospital by myself during the week.  He will, of course, come in the evenings and possibly during his lunch periods too, but he has to go back to work.  I think it will be good for him-keeps him busy during the day.  My situation is a bit different since I was going to be staying home with her all summer anyway.  Now, I am just staying in the hospital all summer with her. 

Dr. Weinthal came in early this morning to check on her.  She had slept ten hours through the night last night, not even waking when chemo was administered at 2am.  Everything was much of the same.  She had a transfusion, as we had been prepared to have.  She looks good today, with the exception of a new rash.  We noticed a few spots on her this afternoon. By seven this evening, I noticed blisters above her dressing of her permanent catheter and some welts on her left shoulder.  She has a few other welts too--one on her wrist, on her upper thigh, and one on her belly. I don't know yet what this is from.  Could be a reaction to the chemo, a reaction to an antibiotic, or something else I don't know yet.  Dr. Weinthal will take a look at it today.

A nurse that took care of Allie on our first day on the 12th floor, Kellie, said she had missed Allie last week.  She had been thinking of the baby all week.  She said that she could just tell that Allie has a sweet and good soul.  The other nurses said that they were so worried about her the day of her surgery that Dr. Weinthal came up there to give them an update and calm their fears. 

I had lunch with some friends down in the cafeteria today.  It felt nice to sit and talk, gossip, and giggle a bit.  I always feel guilty when I do because I think it is something I shouldn't be doing, but I remind myself that I have to take care of me too.  If I don't, I'm no use to Allie.  I went down at noon to go and visit with them and didn't come back to her room until 3!  I guess we all lost track of the time. 

Not sure how tomorrow will be.  We are curious to find out what is the cause of her rash and welts (hives, maybe--I don't know what to classify it as yet).  We are just thankful for the positive attitude we have seen from her.  Thank goodness she has always been such a happy baby.  If she had been fussy going in to this, we would have been in big trouble!

We are in the process of finding new ways to make this site easier to navigate and use.  The guest book has been a thorn in Andrew's side for quite a while.  We built this site merely for the convenience of showing off pictures of the baby, not to have thousands of hits to the site each day.  We know it isn't that sophisticated, but please bare with us.  Andrew and I will be trying to make it more user friendly for you because we do want you to continue coming to our site. Please know that we are in this for the long haul--we will need your continued prayers and support. 

Thanks!

Friday. May 14th-

9:00pm--Everyone person who walked into her room today got a smile.  Some got bigger smiles than others.  Her nurse tonight, Vangie, is commenting on what a sweet and happy baby she is.  One of her favorite nurses, Kochumol, was her nurse again today.  Allie watches her every move.  She always wants to see what she is up to.  It is really sweet to watch her with the nurses.  It makes me feel good knowing that she has become so loved by everyone here. 

She looks really good today.  Her white blood cell count has been hovering around a thousand.  Her mouth sores haven't gotten any worse, but they haven't gotten any better either.  Her diaper rash has progressively gotten worse, so they ordered special cream that is called "butt cream" to try using instead of the Desitin. I hope this helps her.  Her skin is just rubbed completely raw.  I hate to change her diaper because I know it must be painful for her. 

She didn't need any blood today, but she will definitely need a transfusion of red and platelets tomorrow.  Tomorrow is also our last day of chemotherapy!  Then, we wait and see.  We don't know exactly how her body will react to the chemo, but we have been prepared.  As Dr. Lenarsky explained, the good for Allie is very good--all her major organs look great.  Her kidneys are functioning so well that Dr. Weinthal decided to take her off of lasix starting tomorrow. 

I was able to get away from the hospital today to go up to my school.  My PALs were having their annual New/Old PAL party.  This is a tradition for them.  We have awards by me, some serious and some funny, the current PALs "will" something to leave behind to the next class, and then we go to the gym for tug-o-war and pizza.  The kids did not know I was coming.  I made it just at the end of their class period, so I called my sub and had her send one student (who actually knew I was coming because we had talked on the phone the night before) to meet me at the side door.  Megan and I then walked down the hall to come in the class.  Just before we got to my room, Donny came out to get a drink.  He glanced at us, said hi, then kept walking. That was, until he realized it was me that he had seen.  Together, Donny and Megan walked in the room and said, "Hey guys, look who we found in the hall!"  When I walked into the class, they started screaming and then literally enveloped me in hugs.  It felt so good!  It was an emotional reuniting, but boy did it ever feel good. I then got to see my 7th period French class, students in the hall after school, teachers, and the front office staff.  Everyone made me feel so welcome.  I love teaching, and I love that school.  I can't describe it, but it is definitely a "second home" to me--maybe that is because I have always been such a hard worker and have spent countless hours in that building!

I stayed for the entire party. Towards the end, the kids asked me to sign yearbooks.  As everyone began to leave, I had a few kids lingering to talk with me.  I knew that I needed head back to the hospital, but I just couldn't walk away from them.  We stayed there an extra hour talking, laughing, hugging, and crying.  It reminded me of why I became a teacher in the first place.  The last five or six helped me take stuff to my car.  As they turned and walked away, I finally broke down and cried uncontrollably.  I sat in my car for quite a while crying.  I cried for my beautiful baby, for Andrew and my family, for my students who I love so much, and for just the situation in general.  It broke my heart to drive away from there. I just wanted to go back to two weeks ago when driving away from Rice just meant heading to Mike and Angela's house to pick up the baby, have Friday night dinner and hang out.  I wanted to have things back to normal.  But, I know that isn't going to happen. I know that I have to find sense and stability in our new situation. I know that I have to be thankful that I was at least driving to see her at all. 

People gave me some items that they were planning on bringing them up to the hospital. Plano Senior High's PAL group donated various restaurant coupons, we had cards from students and teachers, and even an envelope from people at Robinson Middle School (keep in mind, I teach at Rice Middle School, so this was very generous of them).  The thing that touched me the most was a card from my 8th grade French students.  I was so nice just to see their names on the card and read all their well wishes for Allie.  Wyatt Elementary, one of the schools the PALs visit to mentor younger students, made a huge banner that reads "Wyatt Elementary Loves Allie Scott."  It is beautiful.  It's just incredible to me how kind people have been to us. It still blows me away when I see such kindness and generosity. 

I'm sitting here typing while watching Allie sits in her bouncy seat (watching Baby Neptune again--she loves that video!).  She has figured out how to make her hospital gown into a fun play toy and she is giggling and laughing at herself.  What a blessing she is!  I could just watch her like this for hours!

Please keep signing our guest book.  Andrew and I read EVERY post.  They really make us feel good, all "warm and fuzzy inside!"  I wish we had started tracking where people have been posting from--we've had posts from all over the world!  Who knew that my daughter would become the most loved baby?  Well, I knew that she would be a very loved baby within our immediately circle of family and friends, but I never imagined anything like this.  Then again, I never imagined I would be writing about how my daughter has leukemia. 

I know we are picture obsessed, but we just can't help it!  Andrew took these this morning. Check out those smiles!

Thurs. May 13th

10:05pm--Not too much to report today.  We didn't have to stay in PICU very long.  When we arrived, she was smiling, laughing, and looking all around.  The PICU doctor said that she looked way too good to be down there with them.  Dr. Weinthal checked her out and ordered for us to go back "home" to 12th South. .  All the nurses on the 12th floor welcomed her back with open arms. They cheered and loved on her as soon as they saw her.  "Welcome Back Allie" was written on her dry erase board when we got in her room.  Strange to say, but it was good to be back there.  It feels safer up there.

The rest of the day went by fairly uneventfully.  She watched Baby Einstein (she loves Baby Neptune--she will be captivated with the TV), smiled, laughed, and tried to sit up.  Even though she is sick, she is still trying to learn how to do new things.  While sitting up, she is so happy. 

I think her mouth sores really hurt her.  Dr. Weinthal explained that they can go all the way down inside to her GI track.  She tried to take a bottle today, but she wasn't successful.  She could only get down an ounce.  The doctor also explained that she has mucusitis.  This is a build up of mucus in her throat that makes her struggle with swallowing. 

My mom is staying with her tonight so that Andrew and I are able to get some sleep. I thought I would have been able to sleep well last night, but I couldn't get more than four hours.  Having my mom there with her makes me feel safe and comfortable enough to take a PM pill and try to get some sleep.  I have to be rested to keep my strength up. Plus, it's nice to have some quiet time with Andrew (wait, my quiet time is being spent typing to you!).

Let's pray for another uneventful day tomorrow!

Wed. May 12th

10:25pm--Today was a really rocky day.  It started well on the 12th floor and ended back on the third floor in PICU.  Let's start from the beginning:

Allie woke up perky and happy.  She smiled, laughed and played with everyone.  Dr. Weinthal came in and said that she was doing very well and the surgery was planned for 4:15 this afternoon.  Her platelet count was fine, but her red blood cells were low.  Before going in to the surgery, she would have to have a red blood cell transfusion.  This began around 10:30am.  Around, noon, we got word that surgery was going to begin in a few minutes.  Huh?  Thought they were taking her later--apparently, they wanted to get it taken care of earlier.  Her Ara-C chemo treatment is always scheduled for 2pm.  We would just do that when we returned. 

The procedure should have lasted for thirty minutes.  Should have.  Allie went in to surgery for her new permanent line. They cut in to her chest and then again near her throat.  The line actually connects to her jugular vein.  I didn't understand exactly the procedure because the surgeon used too technical terms. I plan on asking more questions with Dr. Weinthal tomorrow.  After an hour and a half, Andrew and I began to wonder where our baby was.

Dr. Herman finally comes out to tell us that the line was completed and looks great, but there had been a complication.  When they began to administer anesthesia, Allie had a severe reaction.  She lost her pulse, looked "dusky," or a blue/grey color, and struggled with her breathing.   They intubated her and tried to get her to recover and get her color back.  They were also worried that she had become septic, which means having bacteria in her blood stream.  For an AML patient, that is very serious. Luckily, they found she wasn't.  She would have to stay in PICU to be monitored and go on blood pressure medicine. 

She rolled passed us a minute later to head across the hall to PICU.  They had an intubator down her throat, a pump to help her breath, and looked pretty rough.  Apparently, she had a reaction to the anesthetic Propofal, also known as Deprovan.  The doctor told us that one in a thousand kids will have a reaction to this medicine when going in to surgery.  It was totally non-leukemia related.  However, she was still in a serious state.  She became to wake up quickly, and was very irritable about having the tube down her throat.  She actually coughed it loose and they took it out quicker than they had expected.  She let out a serious cry to let everyone know she was not pleased.  Her cry was very hoarse, so they put a cool mist respirator over her mouth to help with swelling and breathing.  She wore this for about three hours.  In PICU, they have to be very careful about infection.  They placed a sign on her door that says, "Neutropenic Precautions."  Anyone who steps in her room must be fully outfitted with a blue plastic surgical gown, latex gloves, and a face mask.  We have to be very cautious about not letting in germs that she could possibly catch.  Her door must remain closed at all times.   Those gowns are so hot and uncomfortable, but if they are necessary for our baby, you better believe we will wear them.

Before taking out her old direct line, they had to give her another platelet transfusion.  Platelets are necessary to help your blood clot if you bleed.  With a low count, she is more likely to bleed more and have more complications.  Angela Krieger, our great and amazing friend and Allie's caregiver, gave platelets yesterday.  We'd like to believe that Allie got her platelets from Angela. 

She was looking well by the time we left tonight at 10:15 to go to the hotel.  If all continues to go well, she will be back on the 12th floor by mid morning tomorrow.  We just have to pray that she will continue to progress so well.  She is on pain medication to help her sleep tonight.  When I came in to say goodnight, she woke up, looked at me, and gave a smile. It was as if she was telling me not to worry, she's a fighter and will make it through. 

Since birth, we have always known that our Allison is an overachiever (gee, who did you think she got that from?).  At four hours old, she held her head up, looked around for 10 seconds, then laid it back down.  She gained weight in the hospital, which is very uncommon.  She always functioned a little older than what she actually was.  She rolled right on scheduled.  Of course, going in to this, her weight and health before now is a big advantage for her.  Out of the two acute leukemias, wouldn't you just know she gets the worse kind?  So, having this reaction to the Propofal and then coming back so well so quickly just goes to show even more what an overachiever she is.  One in a thousand get a reaction, wouldn't you just know it would be our girl? 

I need to stress the importance of giving blood.  So far, Allie has gotten three red blood cell transfusions and five platelet transfusions.  Without these, we would have lost our little girl.  Even if your blood is not used for Allison, it will be used on a very worthy child.  Most people think to give red blood cells.  For leukemia patients, platelets are just as, if not more important.  Red blood cells can be stored for a longer period of time.  Platelets must be used within five days.  A nurse at Carter told Angela yesterday that there is a shortage of platelets in this area.  They only have about 80% of the platelets they need to meet the needs of local patients.  They end up having to purchase them from other cities and as far as out of state.  They can also get more out of platelets from one donor.  Giving platelets requires more of your time, so you must have time to spare. 

If you live here in our area of North Dallas, you can go to a Carter Blood Care Center and donate in her name.  There is a Carter on Parker and Preston in Plano, TX.  Their phone number is 972-612-2098 or you can e-mail pkoffice@carterbloodcare.org to make a reservation or have questions answered.  To donate in Allie's name you need the following information:

Allison Leigh Scott

1599 Rolling Brook Dr.

Allen, TX  75002

Hospital--Medical City of Dallas, North Texas Hospital for Children.

If you don't live in the area, you can still donate for another child that could use blood.  AML patients may have numerous blood transfusions during battle with the disease.  You could help save a life simply by doing that little thing of donating blood.  Someone made a comment about being afraid of needles, so that is why they won't give blood.  Well, don't you think my infant isn't too fond of needles either?  Think of the children (and adults too, of course) who need it!

Please continue your prayers for Allie!  We definitely need them!

God bless you all. 

Tues. May 11th

7:05pm--If you didn't know any better, you wouldn't realize you are looking at a sick baby.  Allison woke up this morning with a smile on her face and remained that way throughout most of the day (I'm not including the hour and a half that she cried because she was so tired).  However, we know the truth--she is still very sick.

She had a lot of going on today.  She had to have a platelet transfusion due to low platelet count.  Her mouth sores have continued to progressively get worse, keeping her from being able to eat at all.  I think she may have taken 3 oz today--compared to her normal 43 oz a day when she was well!  That doesn't mean she wasn't getting nutrition.  She got lipids to give her fatty acids and TPN to give her the rest of her nutrition. This two medicines insured that she still got all the calories, protein, fat, vitamins that she needs to fight and get strong.  I don't expect that she will be able to eat on her own for a while longer.  Chemotherapy was mid-afternoon, after her transfusion ended.  She has three more days left of this round.  The plan is that she will take about three weeks to try to build up more white blood cells and monitor her immune system, then she will have eight days of more chemotherapy.  That just seems too far away to think about just yet.  So, it may be over four weeks before we get to come home. 

Surgery is tomorrow.  They will be removing her temporary direct line and putting a permanent external catheter.  The doctor doing the procedure is Dr. Herman, who Dr. Weinthal claims to be the best in his field.  He is the one that they always send their oncology patients to.  We don't know as of yet when the surgery will be besides that it is sometime in the afternoon.   She will probably be heavily sedated tomorrow evening to keep her from feeling too much pain.

As the chemo comes to an end, we are preparing to see more side effects.  Dr. Weinthal said he would be surprised if she doesn't get a fever and an infection.  They closely monitor her temperature every few hours.   When we eventually go home, that is something we have to really keep a close eye on too.  As Robin, our oncology nurse, explained, a fever can be the only indication of an infection.  If we notice a fever over 101.5 at home, we have to immediately call the doctor and head to the hospital.  It won't be a situation of taking tylenol and seeing if the fever breaks.  We can't give her any over the counter drugs without permission from one of her three doctors first. 

We have met so many amazing people that have experienced so much with their children.  It makes me appreciate so much more the four months that we spent with Allie before she got sick.  I met a couple in the hall a few days ago named Leslie and Chris Burroughs.  Their daughter, Zoe, has never left NICU.  She was born three months prematurely.   Their website is www.zoebeth.com.  As you continue to pray for Allie, please keep Zoe  and the many other sick babies here in the hospital in your prayers too.  I hope to see them again soon (hopefully with better news for both of us!)

Here are some great new pictures of Allie.  Please don't think that since she looks so well she is fine.  She is still very sick and still needs a lot of prayers. 

Monday, May 10th

7:30--I'm so tired.  I am mentally, physically and emotionally exhausted.  I can't begin to explain it, but I am just so tired.   We have had so many visitors in the last few days.  I couldn't say there was a person I didn't want to see, but it does wear me down.  Most of it was family. My uncle Mike and Andrew's sister Amie both today.  Its was hard to say goodbye.  My mom called my grandma and told her the situation. She is actually in a rehab center after having a major surgery.  She had suspected something was going on, but mom had delayed telling her. I hate complaining though.  I have many blessings in my life, so I just need to remember those. 

On a better note, Allie is continuing to do well. Her white blood count is now 900, so she is officially nutrapenic (see above log for a definition).  No one is allowed to enter her room without a face mask.  We are having to limit visitors even more strictly to protect her.  Dr. Lenarsky told us that they could not detect any "blasts," of leukemia cells in those cells. That does NOT mean she doesn't have leukemia anymore.  It just means that she is doing well with the chemotherapy and her body is accepting the treatment.  With treatment; however, comes side effects.  She has developed sores in the inside of her mouth.  This is pretty typical for chemo patients.  She is also having some bad diaper rash, so we are having to monitor that. Due to the mouth sores, she is struggling with taking a bottle.  She has to stop every half ounce. She will just cry in pain.  She is okay with her pacifier for right now, so at least that is still a comfort for her.

We may be heading to the OR in the next few days.  Her direct line that is under her collar bone for all her IVs, medicines, transfusions, etc, is only a temporary line.  It has to come out in no more than about two weeks.  They will then put in an external catheter in the same area that will be more permanent. She will be able to go home with it.  They felt like since she was doing well this week, now is the best time to do it.  With chemo ending on Friday, she will most likely be getting more and more side effects in the next week or so. 

Dr. Lenarsky signed off his hospital duty to Dr. Weinthal.  The three doctors rotate between being the doctor in the office, being on call, and being the one in charge of the hospital patients.  This is a good method because it allows all three of them to know all the patients.  Both of them came to visit this afternoon.  They even brought her a teddy bear.  They commented on how well she is doing too.  You can just tell that she has become a special patient to everyone.  We have nurses that hug us and love on her.  We have the best nursing staff taking meticulous care of her.  We couldn't ask for more caring and loving people.  They all love how chubby she is (probably is an asset for her to be a bigger baby with being ill now). 

Scary thing to me is that if you just look at her, she doesn't look sick.  She is smiling and very alert today.  She watches everyone and focuses on people and toys.  It is such a joy to watch her be happy. 

This afternoon, I started missing my students really bad.  I looked at the clock and noticed it was 2:15, time for my PAL (Peer Assistance and Leadership) class.  This is the only non-French class that I teach.  I called and spoke with Mona Friedberg in my classroom.  She was my longterm sub during my maternity leave and she has been a godsend during this year.  If any of my students are reading this--you better be VERY appreciative how much she is doing for you.  You are extremely lucky to have someone like her that cares for you as much as she does!!  She told the kids that I was on the fun and that I love them.  They immediately began yelling, "We love you!!" as loud as they could. It brought tears to my eyes. Teaching PAL for the past four years has been a wonderful experience for me (teaching anything for the past four years has been such a blessing to me!).  This particular group of students and I have bonded like no others--nothing against my other groups, I have loved every one of them.  They watched my entire pregnancy.  They asked the best questions when I was pregnant.  My favorite one was Donny Repsher asking me that since the baby was in water, could I "like feel her sloshing around when walking?"  Leave to an 8th grade boy to ask something like that!  :)   They watched my sonogram videos and were so excited when she was born. I brought her up with me when she was five weeks old to visit with them. I've also brought her up to see them after school when we had evening functions. 

Talking to the PALs felt really good.  They all passed the phone to each other so I could talk to them.  I cried with some, laughed with some, and even comforted others.  I have missed them. Of course, Allie is my biggest priority, but all my students have become like extended children to me.  The French kids are doing there oral exams this week.  I hate doing orals because they are exhausting, but I would give anything to be sitting in the main hallway with my kids (all freaking out because they are so nervous to speak aloud!) instead of where we are right now. I would give anything to be with them, have Allie with Angela during the day, and have some normalcy back in my life.  Unfortunately, that just isn't going to happen. 

Some of my kids are going to France/Spain in fourteen days.  Andrew and I were also bringing Allie. We had her passport and everything.  Now, we are just praying to maybe be able to bring her home for a few days before her next round of chemo.  France is a forgotten thought.  I hope the kids have a wonderful time. I told one of my girls today that I just want them to enjoy every minute.  I want them to smile and take in every monument, church, and city that they visit.  I want to hear their funny stories, see their pictures, and read their postcards.  They are meeting with each other and the other teachers they are traveling with as we speak.  Guess that is why I am thinking about them so much.

My mom is staying with the baby tonight so that Andrew and I can be at the hotel together tonight.  I have slept there for the past two nights. It is impossible to get a good night's sleep, and I am just unable to nap during the nap. No time.  I plan on taking a tylenol PM and getting some sleep tonight. 

Hope everyone is doing well.  I'll update tomorrow night (with pictures--our camera's batteries died, so we just need to get more).  Love you all