Week 11

**Meals needed--if you are interested in providing a meal to the hospital for our family (and we share with our amazing nurse staff!), please e-mail me at jscott665@hotmail.com.  The kindest of our friends and family in regards to meal delivery is so helpful and we are very grateful.  Thanks!**

Sunday, July 18th--Day One

9:45pm--You know that saying, "Today is the first day of the rest of your life?"  That's Allie today.  Never has that statement been so true.  Today is Day one. We will count up until at least Day 100 to monitor her.  At the least, she will be here until Day 30, but there is a chance she will be here much longer, if not the entire 100 days.  I wouldn't be surprised at all.

Allie is asleep on my chest, so typing isn't easy.  She has had some painful moments.  She will scream in a way that I have never heard.  This started yesterday afternoon. We don't know exactly what is causing the pain.  It could be the steroids, something from the chemo, the anti-rejection medicine, teething, etc.  Any number of things.  Dr. Goldman approved a fentanyl drip today giving her a continuous amount every hour. That seems to be helping. She whimpers a bit, but it isn't anything like it was.

Hard times will be coming. In the next few weeks, she may get very sick.  I'm scared to think of the many things that can happen to her.  Most of these things have a high probability of happening. 

After finishing my post last night, Andrew and I left Allie with my mom to head to another hospital in Lewisville.  Andrew's grandmother was hospitalized a few days ago, and his father had arrived yesterday from Santa Fe.  We met Drew, Andrew's dad, in his grandmother, who they all call Sissy, room.  She looked better than we had expected.  Please pray for her and her family.  She is coming to the end of her journey and is ready to join her husband.  Pray for peace and comfort for both her and Andrew's family.  Andrew is understandably upset.  The two of them were close.  He adores Sissy. 

The two of us spent the night in a hotel.  It was nice to be together and away from the hospital.  I woke up several times in the night missing the baby though.  Sometimes I think I sleep better here.  I just feel safer knowing she is beside me.  We had a nice breakfast with Drew here in the hospital cafeteria before we returned to Allie's room.

My best friend Debbie moved here with her husband and two children last Wed.  She called me this afternoon needing some "girl time."  We opted to walk around Valley View mall and see a movie.  We saw The Notebook.  Excellent movie. I love the tear jerker films.  The heroine's name was Allison, but everyone called her Allie.  What a great choice for a heroine of a movie!  I enjoyed every minute of the movie.  In the end, I was tearing up.  Without giving away the ending, someone says to the heroine "I love you, Allie" right before the end of the film.  I began to cry as the credits started rolling.  Something hit me. I want for someone to look at MY Allie and say that for her one day.  It was a film about love.  I want that in Allie's life.  I just cried and Debbie held me.  People watched us as they were leaving.  They were probably thinking "Ok, lady--the movie was sad, but come on!"  I wasn't crying for the film, but for the real life tear jerker story I was living.  Deb and I cried together throughout the whole film credits before we composed ourselves and walked out of the theater (not looking pretty, let me add).  It was a good movie, good company, and a good cry too.   Much needed. 

Jordan is back on the floor, but I only got to chat with Amy and Matt briefly before leaving with Debbie.  Amy says that the doctors suspect walking pneumonia.  I naturally took a step backwards from them both.  Allie has only 100 white blood cells and an ANC of zero.  Not enough to fight anything, so I can't be too cautious.  Sam goes to clinic in the morning, but he doesn't check in until 8 at night. I am excited for Dana's company, but I am scared for Sammy too.  Just wish we could be meeting up on a beach in Florida, not here in a hospital.  I bet Dana would be fun to vacation with!  Annie, the mom of the new baby Fielden, is a very sweet lady.  I got to see Fielden through the window of his room today while Annie was rocking him.  He's tiny!  He looks smaller to me than Allie did when she was born (and he's three and a half months old!).  Poor little guy.  They found out that Emma Day, his two yr. old sister, is a match for a bone marrow transplant. If she had not been a match, they would have gone to finding a cord blood match. 

Allie is starting to stir and I am straining to try to type and keep her comfortable in my arms at the same time (without waking her up).  Have a wonderful night.  Please pray that Allie's pain can be managed without too much trouble.

We love you all,

Jenny, Andrew, and Allie

Saturday, July 17th--

7:00pm--There are moments in everyone's life that they will never forget.  I too have those moments--hugging my dad when I got my driver's license, telling Andrew "I love you" for the first time, hearing my dad had cancer, getting married, holding my mother at the funeral, winning Beginning Teacher of the Year for Plano ISD, looking into my first born's eyes for the first time, and hearing that the first born has leukemia.  Well, let me add one more moment to that list--watching the stem cells travel through the tubing and finally entering her body, giving her a new chance at life.   It was indescribable.  We were joking about that we could be a Mastercard commercial:

Daily TPN--$2,000

Hospital room--$3,000/night

Transplant deposit--$150,000

Cord blood transplant that could save our daughter's life--PRICELESS!!!

Its Allie's 7 month birthday!  Seven is going to be our lucky number because she is 7 months on 7-17.  Allie woke up doing fine, but had a bit of a meltdown before the transplant.  She was still tired.  Dean unfroze the cord blood this morning, and he declared it a perfect specimen!  He said that we got enough stem cells out of it for a teenage child.  Dr. Goldman had told me the other day that they would also test its viability.  Even if it was 60%, they would still go for it.  He told me today that it was 100% viable!  That's the best news we heard. 

Allie is sitting in my lap talking and grunting.  She likes to experiment with her voice.  Last night, she was in the bed with her feet straight up in the air screaming.  Not screaming in pain, just trying different pitches in her voice. I stepped out to the nurses station and they immediately asked if Allie needed some fentanyl. I told them no, Allie was just playing in the bed.  Sure enough, she fell asleep on her own (while clutching a giraffe in each hand) about twenty minutes later.

Allie stinks!  I mean, absolutely reeks of something that smells like either oysters or canned asparagus.  Its the preservatives that they use to thaw the stem cells.  They say that in adults, the smell is so strong on the day of transplant that you can smell it from the time you walk in the room.  Sam won't have this problem though since his stem cells will be harvested from Ethan that day. 

The days and weeks coming up are very unknown for us.  We will be waiting for her counts to come back up to see if the donor took.  We are praying that the donor helps wipe out any leftover leukemia.  Please PRAY PRAY PRAY!!  As I know you will, of course. 

I am going to cut this short as I know you all are ready to hear how she is doing.  She is doing very well.  Thank you for your prayers today and every day. 

Love,

Jenny, Andrew, and our priceless baby Allie

This is it!!! This is the cord blood--what a vibrant red color	Asleep during the transplant
Allie and Cindy, her nurse who performed the transplant	Post Transplant Smiles

Friday, July 16th--Day Minus 1, Transplant is tomorrow!

9:00pm--I get e-mails all the time. Sometimes it takes me hours to go through them all and attempt to respond.  Most of the e-mails that have been well wishes, I have not responded to.  There is just too may of them.  However, I got one today, that I thought I would share with all of you.  Here it is:

A few days later my friend Noita--we call him Nate (who is from South Africa) mentioned  to me a strange dream he had. He said that the night we had spoken he dreamed he was pacing in a hospital outside of a door only it was in a grassy field inside, a savanna, i think is what he called it. This went on, his pacing, he said he saw a group of 9 giraffes standing down the hall from him. And suddenly they charged but stopped short just before trampling him. And they all laid down facing the door he was pacing by and he suddenly felt very calm. He told his father, who is visiting the U.S., about the dream. I really don't believe in this stuff at all, but his father said that the giraffe can be a sign of either triumph, time, strength, long distance, or hidden truth.

The weird part of this is that I never told him about Allie's thing for her Sophies or how your room is full of giraffes.

What a powerful story.  Triumph and strength, I think those are things we will be seeing. 

Dr. Goldman said this is the best he has ever seen her.  We had yet another fantastic day.  She played more today than she has collectively all week.  Only two thirty minute naps. Its as though she knows that she could be very sick in the upcoming weeks post transplant, so she is going to take advantage of every minute. 

During our time on the floor, Allie showed that leukemia isn't going to stop her from developing!  She now can reach out for toys very well, she sits up on her own for more than twenty minutes at a time without falling, she can play with toys and move her arms during tummy time, and she even is learning to roll onto her side to reach for things that she wants.  Jacob says this is a precursor to learning to crawl. Jacob and I just laughed and laughed at her during her physical therapy.  There she was, surrounded by toys, and the thing she desperately wanted to play with was my water bottle. It frustrated her to no end that the bottle was out of her reach, and she was squealing trying to reach it.  I have to admit, it was pretty darn cute.

Transplant tomorrow is set for 10am.  She will be exactly seven months old.  Its her second birthday. Works out well--she'll have one in the winter and one in the summer to celebrate.  It only takes thirty minutes to go into her body.  Her nurse will do it, not the doctor, though Dr. Goldman will be in the room.  Effects do not show up immediately. It usually takes a few days up to a few weeks for them to show up.  Today, her white cells are only 400 and there were no blasts, or leukemia cells, detected in her blood.  Of course, we know there is still some leukemia left over. The hope is that the donor cells will "seek and destroy" those leukemia cells. That is a little bit of graft vs. host disease, or GVHD.  There are medications to help counteract everything, so hopefully, they can keep GVHD under control. They have lost children to GVHD, so it is definitely a fear. 

Some specific prayers--that her body continues to NOT have any reactions to ATG or the anti-rejection medicine cyclosporine.  Pray that her body accepts the new cells, that the new cells destroy any remaining leukemia, and that her GVHD can be manageable.  Pray for all our family in the upcoming weeks that we have strength and help take care of ourselves too.  Pray for Sammy. He is coming in for his radiation pre-transplant on Monday.  Dana and Dennis need prayers so that can feel at peace with their decisions, and find the strength too to endure all that is coming up for their future.  Pray for little Ethan, Sam's twin brother, who will without his mommy constantly by his side and without his brother to run around the swimming pool butt naked. 

Be sure to stop and pray for Allie tomorrow at 10am central time to send positive thoughts to our girl. I don't care what demonination, what religion, Allie just needs all the positiveness she can gets.

All our love,

Jenny, Andrew, and Allie, the giraffe loving, chunky faced, sweet and loving baby!

OH, I forgot--Allie's tooth FINALLY appeared!  Only took about three or four weeks, but she has a tooth now (not that she will let you see it).  We even feel two other teeth buds wanting to pop out.  Too cute!  Enjoy a couple of pictures.  Man, it was an awesome day!

This was pretty much our day today.

Jacob calls this the side-sit position. She is wanting to learn to crawl.

Thursday, July 15th--LAST DAY OF CHEMO!!

How bad of me--I realized I haven't posted any pictures all week.  So, let's start off with pics--

Notice how her left eye droops when she's tired?	She discovered the pulse/ox monitor on her toe which has a bright red light.  Like ET toe!
Aren't feet the most fun toys out there?	Loving on Grandma
Sitting up tall--Jacob, her physical therapist, is so proud!	So tired that she can't even keep the paci in her mouth!

These last two pictures need a little explaining.  On the first day of chemotherapy, Wed. May 5th (she was diagnosed the day before), she was given a bear from Robin, the oncology nurse.  We named this bear C.B.--"Chemo Buddy," and usually kept it near her during times of chemo.  It only felt appropriate today to take out the bear and take a picture.  The first picture was taken on that first day when Allie looked so horrible in PICU, and the picture on the right was just this afternoon. During those first few days we were here, she didn't even look like my baby.  I had to post a picture of her above her head so that the nurses could see what she really looked like!  What a journey we have gone through so far.  She has changed so much.  Poor baby has much more to endure, even though she has already endured more than I could ever imagine. 

10:30pm--So today is the last day of cytoxan, her chemotherapy.  If all goes well with this transplant and her leukemia STAYS AWAY, this could possibly be the last dose of chemo ever!!!!  That's definitely a big prayer.  Please pray that she will not have to have chemotherapy ever again in her life. 

From the way I've started this post, can you tell we've had yet another stellar day?  Oh, but we have!  Allie didn't wake up until 9:45 this morning. She has always been my sleeper.  The nurses have pretty much all learned not to bother Allie is she is sleeping. She gets really cranky when they do and it usually ends with a meltdown about twenty to thirty minutes later. Since I am vocal enough, I am championed for my daughter and made sure that she doesn't get bothered when she is sleeping.  She woke up with a smile and we immediately started playing.  She finished chemo without ever even knowing she started.  Allie is now rocking with Michelle. The two of them have really connected.  Michelle is gently stroking her head as Allie is laying with her chest to chest.  I don't think you can find better nurses than the ones up here.  I feel a connection to them too.  Watching someone else love my child like this, its a strange feeling.  I feel safe being here because I know how much they care and love her. I know that if there is a problem, these women will do everything in their power to help ratify it. 

Linda, the child life therapist, played for forty five minutes with Allie while I got the chance to shower. The life of a 12th South mother--I can't just stick her in a bouncy and take a shower with her in the bathroom anymore like I used to.  Of course, I can't stick her in a bouncy at all because she bottoms it out!  Yes, she is that big.  I have to wait until someone is able to sit with her and then I can shower.  So, today, Linda was that someone.  They played on the floor and Allie laughed and giggled.   Afterwards, Allie and I continued to play on the floor.  She is getting really good at rolling now, and she sits up without aid very well.  She will fall forwards occasionally, but for the most part, she's got it down. 

A woman named Andrea e-mailed me today. Her daughter was diagnosed with AML at ten months and is now 6 1/2 yrs old!  She too had myelotarg and a transplant.  Its so nice to hear that some children really do make it through this.  I'm so darn scared for my baby that I don't know how to react most days.  Thank you, Andrea, so much for your encouraging words.  As a mom who has been there, you truly know my feelings.  I needed that e-mail.

Michelle, Beth, and I were talking about Jordan last night and wondering what was going on.  Beth looked his name up on the computer, and we saw that they were still here in the hospital, so they called his room.  Michelle said that Amy sounded really down, so the two of us marched ourselves to the elevators and headed to 6D.  We made a quick stop at the vending machine in search of Skittles for Jordan, but they didn't have any.  We settled for Twix and Reeses' and kept going.  Turns out, Jordan had sinus surgery on his left nostril two days ago!   They also went with a scope down his nose and into lung.  They couldn't see anything to indicate why he is still running a fever.  They still do not know what is plaguing him.  He is having blurry vision too, but they can't get that checked until his counts go up and he is out of isolation.  Poor Jordan--he just looked miserable.  He was on benadryl when we got there, so he didn't speak to us but a little hi.  They are still wanting to get Jordan up on this floor, but its a problem with rooms.  We have to have room for Sam to come on Monday and for Kayla VanCleve to come on Wed. or Thurs.  Both of them are coming in for their transplants, so they have to have this floor.  They don't want to move Jordan up here merely to have to bump him later on for someone else to have his room.  Another prayer for Jordan--please pray that they can move him up here soon, they can determine the nature of his fever, and they can get him home quickly!

I have had the chance to meet the very nice couple next door.  Their son, Fielden, is three months and eleven days.  They have a gorgeous daughter named Emma Day that is two.  They found out today that she is a perfect match for a bone marrow transplant down the road.  What our two babies have is very different.  In comparison to Fielden, Allie is a giant.  He is tiny and can't gain weight (but from his pictures that his mom showed me, he is beautiful).  With having a genetic disorder like he does, his chances are much higher.  His mom said that they gave him an 80% survival rate for this.  Then I look at Allie.  Big, strong, in great spirits, 15-30% survival rate.  It just doesn't make sense!!  Damn this cancer. 

Tomorrow is the day of "rest."  Doesn't really seem like much rest considering what she's getting. She still needs one more day of ATG.  This takes 6 hours to infuse and requires heart monitors, pulse/ox, benadryl and tylenol.  Then, she gets IVIG (everything is an abbreviation), which is a boost for her blood. She needs a steroid and something called cyclosporine, an anti-rejection medication which she will take for about a year.  With the cyclosporine, her blood pressure can go up, she can get agitated more, and she can get flushed.  Another prayer since it begins for the first time tomorrow.  She still gets an anti-viral and an anti-fungal.  She gets bactrim, another antibiotic. Man, sounds like one restful day. 

Someone signed the guestbook with a beautiful message to Andrew.  Andrew is behind the scenes with this website, so you don't really "know" him as well.  However, I can tell you without a bit of doubt, Andrew is the greatest father that Allie could possibly have.  His love for Allie is so evident.  The two of them both just light up as soon as their eyes meet.  He would do anything for her. And for me, for that matter.  I have always said I am spoiled to be married to him.  He is gentle, kind, and helpful.  He may not always talk to others (and then there's me who would probably talk to a tree stump), but I've had better conversations with him than anyone else I know.  He is my rock and my voice of reason.  He has handled himself so well through all of this.  I am the vocal one about my feelings, but rest assured that he feels the same. He loves this child with his every being.

I'll leave a few words to my high school sweetheart--Andrew, you are such a wonderful daddy.  I have loved you for many years now, and I promise you that my love isn't going anywhere.  I think I love you more now than I did even a few months ago.  This experience has shown a new side of both of us, and I think it will make us stronger one day.  I will love you all the days of my life.  Thank you so much for being my husband.  Thank you for the love you give me, Allie, and even our sweet Brandy every day. Thank you for working every day to provide for our family, for handling our finances, for running little errands like you did today, and for being the one I can always rely on.  Thank you for you.  And MANY thanks to Frances and Drew--you made a wonderful son! 

All my love to Andrew, Allie, our parents (including the one watching over us right now!), Jeremy and Amie, our siblings, and all our family,

Jenny

Wednesday, July 14th--Day Minus 3!  Transplant day is coming soon!

8:00pm--Allie is sitting in her daddy's lap watching Neighborhood Animals right now.  She has been in a good mood today even with the new ATG immuno-suppressant drug.  It is still going right now.  Every four hours, she gets tylenol (no easy feat, let me assure you) and benadryl to help prevent reactions. The most common side effect is a high fever and rash.  She is also getting a steroid that started today. 

Dr. Goldman was excited to see her today.  He said several times that she is doing perfectly.  Her counts are dropping and her energy and attitude are both great.  She played with Jacob for almost an hour today, working on standing up and "sitting up tall."  He said several times that he is surprised at how well she is doing with all that is going on with her.  She's taken everything like a champ. 

We have a new neighbor coming tonight.  Its a three month old baby, but I don't know if its a boy or girl.  I'm sure I will meet them in the upcoming days.  The baby has SKIDS.  I don't know what it stands for but it is a genetic disorder where you don't have an immune system ("Bubble Boy" if anyone of you remember the movie).  Allie is the old girl on the block now!  I just can't believe she will be 7 months on the day of her transplant.  When we came here, she was 4 1/2 months old.  She has grown so much.  Amazing how she has still been able to thrive here.  She has learned to do so much and is really developing her little personality.  Michelle, one of Allie's favorite night nurses, brought a shirt from Old Navy that says, "Little Body, BIG Attitude."  She said that was just perfectly describing her. 

From what I know, Jordan is still on 6D.  I haven't heard anything from Matt and Amy, so I will try to contact them tomorrow and get the scoop.

Last week, I asked for questions.  Here they are:

I'd heard that if the blood type is different that the recipient's blood type will change to be the same as the donor's. True?

Yes, it's true!  Whatever type the donor is, Allie will become that type. 

Why is it that cord blood transplant is being done rather than bone marrow? Is it an age consideration?

 It's really more because Allie has no sibling matches.  Finding an unrelated bone marrow match is very difficult, and they don't like to do it unless it is a perfect match.  Given that, cord blood is the better option.

With all this chemo this baby has had what is the long term effect of it?  do they know?

 She may be shorter for a while, but there shouldn't be long term effects from chemo.  If we were doing radiation, there would be a lot more to worry about.  Because she is less than three, they will not consider radiation.

Might Allie need a bone-marrow transplant later?

 No, this is her only option. If this transplant doesn't take, we will only have the option of chemotherapy to help her. 

Once the transplant is done, how long till you know if the AML cells are gone?  Also, if (I mean when, as I am sure it will happen!) they are gone at that time, will she be considered "cured", or is it more like remission?  Once she is successful, are the odds good that she'll remain leukemia free? 

Tough question.  Leukemia cells are tricky.  We may always be looking over our shoulder.  Every time she has a fever or complains of fatigue or bone pain, we will worry.  She will have to be checked weekly for several months, then on a monthly basis for more than a year.  Her counts should be coming back with the new cells about four to six weeks post transplant.  They should be able to detect how many blasts are in her blood. 

Do you feel like you've done a crash course in med school?  Isn't it amazing what  the medical community can do?

 YES YES YES!!!

Since the Transplant will have a boys chromosome, will it affect Allie at all?

 Only her blood will have XY chromosomes, nothing else in her system.  No, it will not turn her into a boy or make her have more boyish tendencies. Though, the doctors do say they like to tease their male patients that get female stem cells, asking them if they watch "chick flicks" more since the transplant!

What will the cord cells do that a bone marrow transplant would not?

 From my understanding, they pretty much do the same thing. Just a different way to collect the cells, but it has the same effect.  Cord blood has just given the doctors an expanded amount of choices because it opens it up to finding a match easier. 

If you have any other questions, go ahead and ask. 

Have a good night,

Jenny

Tuesday, July 13th--

11:00pm--Allie has had a much better day!  Besides being very "Mama clingy," she hasn't fussed much.  Her separation anxiety is building up much higher than it has ever been.  If I am in the room and not in her line of site or with her, she gets very upset.  If I leave the room and leave Allie with my mom, she's fine, no problems.  She stayed with my mom while I had dinner in the waiting room tonight.  They had a great time. As soon as I came in the room, Allie fussed until I held her.

Dr. Goldman was very pleased with how she is progressing. Her ANC is now at 360 and her white blood cells are down to 1,900.  Her platelets got a sufficient bump to 100,000, so we probably won't need to transfuse for at least another few days.  She starts a new medication called ATG, an immuno-suppressant, tomorrow.  The interesting thing about this medicine (and something that I still don't completely understand) is that it comes from a rabbit.  Yes, something that was in a rabbit is now being injected into my child.  Who thinks of this stuff?  Yes that's where animal testing is important.  They discovered something that can help patients like Allison. 

She is not asleep yet, so I am just now getting the chance to write.  She needed a red blood cell transfusion tonight.  Its going right now and I just noticed a leg up in the air.  Allie and I aren't on the same page here--I think its bedtime and she doesn't! 

Thank you so much to everyone who e-mailed me about a meal. If I didn't respond to you yet, I promise to do so in the morning.  I was swamped with such kind people offering meals!  I can't say enough how helpful meal deliveries are.  Tonight's lasagna fed five people in my family, April and John in room 1208 (John is the patient and April is his wife), and about five nurses.   It helps bring people together.  These women work so hard. Its the least that we can do to share the generosity sent our way to others. 

I'm so glad that she had a better day.  She is starting to nod off now, with the aid of fentanyl, but she's rooting around the bed for me.  I think I will cut this journal entry short and head to bed with her.  I love this snuggle time at night, and our time together first thing in the morning.  Its my favorite moment of the day!

My love to you all,

Jenny

Monday, July 12th--

11:20pm--Notice the new banner at the top of the main page?  That is for the Light the Night Walk coming to Plano on Sat., Oct 23rd.  If you click on this link, you will go directly to registering for being a part of the 12th South Angels team to walk in honor of Sam, Allie, Jordan, Ted, and all the other people who are battling leukemia, lymphoma, and myeloma, here on 12th South. I  may have been wrong about the cost of registration.  Please check it before you registered.  There are also types on how to fundraise to raise more money for the society.  We hope you will join us!

Today was a hard day for the baby. She started cytoxan, chemotherapy, and about three other medicines today.  She woke up happy and we played for about two hours.  At eleven, she fell back asleep for a thirty minute nap.  From 11:30-1, she was so unhappy.  The only thing that would comfort her was to sit with me. I went into the hall to see Sammy and Dana for a moment.  Allie had been playing on the floor without any problems.  Cindy, her nurse today, came in to play with her so I could talk to Sam for a minute.  By the time I came back in, she was wailing.  As soon as she got in my lap, all was okay again.  Linda came to play with her for a while.  She didn't want to do much with her though.  In the end, she compromised with sitting in my lap and watching Linda play in front of her.  You could just tell she wanted to be good and participate, but something was bothering her. 

She needed a platelet transfusion today.  Transfusions will be apart of our lives for at least the next six months to come, if not longer.  We took the opportunity to take a nap together, sleeping until 4pm when Andrew came.  She didn't have many happy moments tonight.  Not always unhappy either.  Just not feeling well. 

Beth, our nurse tonight, gave her some fentanyl at 10pm to help her sleep.  Apparently, she was in some pain because she is now back to being Allie (note, not sleeping yet).  She is playing happily on the bed under her toys.  Talking and cooing to her toys.  She has a Sophie in one hand and another giraffe and is perfectly content.  I'm on the bed with her, but she doesn't seem to need my presence as she did earlier today.  What an awesome kid.  If I had a bad day, I certainly wouldn't be up playing later on. I'd be in bed moaning and complaining, as most of us adults do so well.  I'll talk to Lenarsky about this tomorrow.  Maybe it's time for a fentanyl drip again?  They told us that she would need one for sure once transplant happens.

Four more days. Three days of chemo, one day of rest and cyclosporine, an immuno-suppressant.  She is also getting a new anti-viral medication, as well as something for her kidneys and bladder.  She still will not take a bottle at all, and she rarely wants any baby food either.  Her mucusitis is starting to come back, causing her to vomit a couple of times today, as well as gag several other times without throwing up (you wanted to hear all that, right?). 

Andrew, my cousin Michelle, and I went to the Galleria for dinner at La Madeleine and to exchange some clothes at Gymboree and diapers at Target.  We had several packs of regular Pampers, but we have just recently discovered Pampers Cruisers.  They fit her really well.  I just can't believe how big my little girl is now--she wears size 4 and sometimes 5 (when her belly is too bloated!).  I was pleasantly surprised at how comfortable Andrew seemed to be with Michelle.  He doesn't even remember having met her at my dad's funeral.  Life was such a blur then.  With us, Andrew is very talkative, but not always with strangers.  The three of us have been visiting great since she got here yesterday.  We enjoyed our meal and all three of us talked (I have been known to do more of the talking--for those of you who know me, you're sitting there nodding your head in agreement right now, I know!--but it did feel more equal tonight).  We came back to the hospital for a little while, and then Andrew offered to drive her to her hotel near Love Field so that my mom didn't have to.  She is flying to San Antonio for the day tomorrow, but she'll be back here for dinner tomorrow night before heading back to Indiana early Wed. morning.  He called me on the way back, and I thanked him for driving her.  I commented on what a good person she is.  He said that he doesn't know exactly what it is, but she reminds him of Debbie, my friend in Austin (only ONE more day and I won't say that anymore because she's moving to Dallas!!!).  Must be why he was comfortable with Shelly.

Sam looked great today. I light up every time I see him.  He is just such a fun kid.  If you get a chance, check out Sam's site.  Dana post some classic Eisenberg Sat. morning swim pictures (which means neither of the twins have any clothes on!).  Dana is a really good writer, much wittier than I will ever prove to be.  I look forward to reading her daily posts.  It's her strength that shines through in her writing that always jumps out at me.  No matter if she is describing a funny story, possibly involving poop, or something sad in their lives, I feel a pull towards her. She has a personality that is infectious.  If you haven't gotten hooked on following Sam's story yet, please consider doing so.  If you already do, think about sending them a quick note in their guestbook.  I would be curious to see how many people are on the "Allie team" that are rooting for our little man too!  I know that I always get excited when someone from the Eisenberg family or a friend of Dana and Dennis sign our guestbook. 

I'll leave you for tonight so you can go and check on Sammy!  For specific prayers--continue to pray for our friend Ted Wren and his family, pray that Jordan will get to go home soon, or that at least they are able to discover the nature of his fever, pray that Allie can have a better day tomorrow and bring back her beautiful smile.  Pray for our moms who are also dealing with this situation and having to work too. Pray for Andrew and I, as we are going to need strength to endure in the upcoming weeks, and for Dana and Dennis who have one last week at home with their two precious boys before Sam is hospitalized.  Please pray for Sammy to continue having days like he did today until he is back on 12th South. 

We love you all,

Jenny, Andrew, and the not so smiley today Allie