January 7, 2003
A day without any appointments - what a luxury.  I spent the day cleaning the house - not such a luxury.  You should have seen me running around the house trying to clean as fast as I could during Anna's naps - actually a pretty productive way to clean the house.  The laundry machine broke so daddy had to run out to get a new one - sort of a bummer, but what can you do -  can't be without one with a baby in the house.  Yesterday we went to Children's in the morning for a developmental testing to get a baseline before transplant.  Due to Anna's last trip to the PICU and the time on a respirator put her back a little, but the doctor said it was nothing to be concerned about.  She has bounced back remarkably well.  In the afternoon, we headed to Dr. Rob's for blood work.  Numbers looked good again yesterday so we are cutting down on her steroids.  The goal is to get her off the steroids before she goes to transplant.  Getting the blood yesterday was a challenge (but pretty funny to watch) since her Broviac (central line catheter) is not working as it should.  Nurse Judy stood on a chair with Anna (and chanted "we want blood, we want blood....), Nurse Suzanne caught each precious drop of blood in a tube while Dr. Bob was the assistant. Anna was such a trooper -she obviously was not enjoying herself, but finally she feel asleep in Judy's arms.  Anna is scheduled for surgery next Thursday to put in a new line, but we have to go back to Dr. Rob's two more times before then so hopefully they can get enough blood.  Anna will not be very happy if they have to stick her.  Tomorrow we are heading back to Children's for more meetings - should be the last ones before transplant.  Hopefully, we'll get a definite date of transplant.

January 8, 2003
We had a good day at Children's today.  The transplant is scheduled for the 29th, 30th or the 31st.  All we have been told about her donor is that it is a 43-year-old male, but we also know that he is a great human being with a big heart who is willing to save our little girl's life. Please  keep him in your thoughts and prayers over the next few weeks as he approaches donation day. Anna will be admitted 10 days prior to transplant to begin what they call conditioning.  This means that she will get chemo treatments as well as other medications to completely suppress her immune system and bone marrow.  The transplant day will be designated day "0".  Since she will be admitted 10 days prior to transplant that will be day –10 while any days after transplant will  be referred to as, for example, day +2 (two days after transplant).  The strong doses of chemo and other drugs will cause some side effects and will make Anna feel pretty yucky for a while, but we have been assured that most side effects can be treated with medication, including pain medication.  On donation day, the bone marrow will be transported from the donor's hospital to Children's.  Anna will receive the marrow through her central line, just like a blood transfusion – amazing, huh?  We were told to plan on a four to six week stay in the hospital.  We have quite
a journey ahead of us, but we now feel as ready as we can.

January 9, 2003
What a day!  We arrived at Dr. Rob's office at 9:00 a.m. and Anna and I finally got in the car at 4:10 p.m. to head home – good thing daddy could bring me lunch.  The blood draw was first which we knew would be a challenge.  Two doses of TPA later, they were able to get enough to send to the lab.  (The TPA is used to hopefully dissolve whatever clot may be there, but it hasn't been working that great on Anna lately.) The Zofran (anti-nausea drug) didn't get started until around 11:30 a.m. The Zofran goes in over one hour, the chemo over two.  It had also been over a week since Anna's last dose of Pentamidine (which is to prevent her having a relapse of the Pneumonia) so that added another after the chemo was finished.  The amazing thing about days like this is how well Anna handles them.  Over the seven hours we were there, she barely fussed at all.   She is such a content and easy-going baby.  Lab work came back good again so  no more Dexamethazone.  The new Broviac will go in next Wednesday, originally scheduled for Thursday, but now we have to go to Children's on Thursday for a pulmonary test.  No more blood work until the new Broviac, which is a relief

January 12, 2003
I spoke too soon about no more blood work until Wednesday!  Friday night around 8:30 p.m. Anna woke up from a nap and as I picked her up she vomited all over both of us.  She had been coughing a little bit too so we called Dr. Rob to see what he thought.  He said to check her closely over night and then meet him at the office on Saturday morning.  We were not feeling good about the whole situation.  What may be just a stomach virus to most kids can prove to be disastrous for Anna.  Over the next hour Anna was acting very cranky, coughing and just not being herself.  We decided we'd feel better if we took Anna in.  Last time she got sick she went from not so sick to very, very sick in a very short time period – we didn't want to risk it again.  Dr. Rob called the hospital to let them know Anna was coming in and as we loaded her in the car seat she vomited again – yuck.  Well to make a long story short, Anna
vomited a few more times at the hospital, but then had a fairly good night.  In the morning, she started having diarrhea.  They tested her for the Rotavirus, but that came back negative even though the nurse said she'd bet money it was the Rotavirus because of the smell.  After Suzanne tried to get blood from Anna's Broviac for over an hour (bless her heart for trying so hard), they finally had to stick Anna to get enough for the lab results.  The lab results came back without any changes from last Thursday so we were able to go home.  Anna is on IV fluids today and tomorrow.  She has been eating and is no longer vomiting and no more diarrhea.  Days like yesterday are incredibly scary.  With Anna's track record of going from good to bad in a few hours, any sign of illness makes us hold our breath.  One more week and we go to transplant to get rid of this disease.  Daddy is taking this week off so that all three of us can spend some quality time together before transplant.

January 14, 2003
Happy 5 months Anna!!  I can't believe she is five months already.  It's been three months since her diagnosis now – in some ways that seems like so long ago, in others it seems like yesterday. Anna looks great.  She's been off the steroids now since Friday and there is definitely a significant change in her appearance – she is much less puffy than she was. It's surprising that you can see a change in such a short period of time.  Anna has recovered well from her stomach flu.  I came down with the same thing on Sunday night and was sick like a dog.  I'm feeling pretty much back to normal today.  Hopefully we'll have no more excitement over the next few days. Heading to St. John's tomorrow for Anna's new Broviac and to Children's on Thursday for her pulmonary test.

January 20, 2003
It's been a very hectic and tough week.  I haven't had a chance to sit down and write.   We are heading to children's today to check in for Anna's transplant. She'll start chemo tomorrow.  I am nervous and scared, but I know this is her chance….

Here is our past week in summary:

Wednesday, 1/15 – It took two hours for the surgeon to put the new Broviac in.  Anna did great, but was not in a good mood when she woke up.  We had to head straight to Dr. Rob's after surgery for blood draws. They had to take a lot of blood to be sent to Children's.  Anna had a tough afternoon.  She was very sore and did not feel good after surgery.  She slept with Daddy all night while I was still trying to fully recover from the stomach flu.

Thursday, 1/16 – Headed to Children's for Anna's pulmonary test.  She had to be sedated again, but did great.  Woke up happy, thankfully.  Had to go straight to the Hematology/Oncology office at Children's for more blood draws.  To really make it a long day, we then went to Dr. Rob's for chemo.  They did her blood counts and surprise, surprise after all the blood they drew her hemoglobin was down to seven and she needed a blood transfusion.  We finally left the office at 6:30 p.m. and were finally home, exhausted, at 7:00 p.m.

Friday, 1/17 – Rest.  Finally received word from Children's that Anna's donor passed the final medical clearance.  Talk about last minute.

Saturday, 1/18 – Rest, clean house

Sunday, 1/19 – Rest, watch football, clean house, laundry

January 22, 2003
Day -8
We were finally able to get online.  Every room has a lap top, but we were having trouble getting on the Internet.  We checked in Monday afternoon and Anna started IV fluids.  On Monday evening she also got a drug to prevent seizures.  The chemo she is on (yesterday, today and Thurs. and Fri) can cause seizures so they prevent those with medication ahead of time.  Both Daddy and I thought Anna was acting very loopy (talking up a storm, moving around a lot...).  She vomited once and then had a pretty restful night. She has received the same medication yesterday and today and has had no reaction so who knows what Monday night was all about. Maybe she was just excited to get this process started?  She gets chemo twice a day - 10:00 a.m. and 10:00 p.m.  Every six hours she gets Zofran to prevent nausea.  She seems to be feeling fine as she has been in a great mood.  She also gets medication by mouth four times per day to help with mouth sores and we also have to swab her mouth with some sort of alcohol solution.  As usual, she takes everything very well (ok, so she doesn't take it all with a smile, but she's not crying either).  She does not have any mouth sores yet, but we have been told to expect them.  So far, so good.  We expected this week to go pretty smoothly, but she may be in more pain (because of mouth sores) by this weekend and get more tired and cranky as her blood counts get lower and lower.  This is not going to be easy, but it is for a cure and that is a good feeling.

January 24, 2003
Day -6
Anna is still doing well.  She will eventually get three different kinds of chemo and tonight she will get her last dose of the first one.  Tomorrow she will start the two others.  We have been warned that she may feel a little yuckier tomorrow.  The doctors are saying that Anna is doing very well.  All her numbers are where they are supposed to be.  She has been in a good mood. Grandpa came yesterday and that has provided some great entertainment for Anna and nice breaks for me.  Daddy has been working this week as he wants to save his off time for when Anna is feeling worse.  Anna is right now propped up in the corner of her crib and taking in the world.  Her hair is sticking in all directions from her bath earlier today.  She's so cute.  I'm sort of getting into a routine here.  We wake up around 7:00 - 8:00 a.m.  Anna eats and gets her first round of mouth medication.  As she is taking her morning nap I try to get some breakfast (as a nursing mom I get a food tray) and take a shower.  Before I know it it's time for Anna to eat and another round of mouth medication.  Around 1:00 p.m. I give Anna her daily bath.  Two more rounds of mouth medication and before I know it the day is gone.  Of course, there is plenty of play in between.  I am so amazed at how Anna is handling it all. Daddy and I are hanging in there.  I haven't gotten too sick of this room yet.  I read, cross-stitch and check email and Anna keeps me pretty busy too.  I'm nervous about what's ahead, but in a few months this will be all behind us.

January 26, 2003
Day -4
Friday night Anna had her last dose of Busulfan (chemo #1).  It felt good to cross that one off our list.  Saturday morning she started Cytoxin (chemo#2) and VP-16 (chemo #3).  Cytoxin goes in via IV over two hours and the VP-16 goes in over four so all in all she gets six hours of chemo.  Tomorrow is the last dose of VP-16, but she'll continue the Cytoxin for one additional day.  The nurse said today that Anna's conditioning can only be described as "brutal."   Some kids that come in for bone marrow transplants may have three day of conditioning and then get a transplant - Anna has nine days of a lot of chemo.  The mouth sores that I mentioned last entry are starting to appear.  Yesterday morning Anna was acting fine, but when I came back from taking a shower I could hear her screaming.  The nurse asked if I thought she was hungry, but I knew that her scream was not hunger - it was definitely pain.  She sobbed for almost two hours.  For those of you who know Anna, know that this is not like her.  Grandpa and I agreed that she has never cried that much before.  The nurse tried some pain medication, but when that didn't work she got an order to give Anna Morphine which helped.  She took a long nap in Grandpa's arms and then did great the rest of the afternoon.  She has to have a bath each day which I was dreading since she seemed to be in so much pain, but by the afternoon she was doing much better and the bath went fine.  She had a restful night and so did I. I could hear her making sweet little baby noises as she was sleeping. This morning the nurse gave her some more morphine before the chemo started to avoid Saturday's ordeal.  The doctor also changed her order so that she is now on continuous pain medication through her IV.  She's been sleeping restfully most of today.  When we spoke with the doctor she made a very good point - that Anna is getting mouth sores is a good sign that the chemo is killing off cells and in doing so killing off all the bad cells which is exactly what we want.  I keep reminding myself that by each day less and less of those nasty cells are hiding out in her body.  Today Mormor (my mom) is coming in town and Grandpa just left for Kansas City.  Daddy is at work trying to work as much as possible while Anna is doing well here.  We decided that it would be more important for him to be around when either she isn't feeling so hot or when we go home.  I am doing fine.  It's really amazing how the days go by fairly quickly even though I spend most of my time in one room with breaks for bathroom and food and now also pumping as Anna isn't really interested in eating - who can blame her?  All in all, we are still doing great.  Anna is a trooper.  Oh, I almost forgot, here is Anna's address in case you would like to send her a card.  Since Anna will not have any memories of this ordeal (thankfully), I want to create some memories for her so I am taking pictures, writing as much as I can on these updates and thought that cards would be a nice addition to her scrapbook.

January 28, 2003
Day -2
Chemo is done, over, finished, no more!!!  Anna is, however, having a little bit of a tough morning. She's been in a lot of pain and it took a few hours to get her pain medication to work. It is so hard to see her like this - I keep on having to fight back the tears....  She is right on track though.  The doctors keep telling us that she is right where she needs to be.  She has been retaining fluids (700 cc!!!) since yesterday.  They gave her Lasix this morning which should take care of it.  The doctor said that her liver is not enlarged, so the fluid is contained to what we can see - her eyes, face, fingers, etc. Her red blood count was down to 6.something so she'll get blood this afternoon. Today she will also get a drug called Atgam (actually it got started about 30 minutes ago) which will go in over four hours.  This is the drug that really scares me - Daddy keeps on telling me I seem tense today and the Atgam is probably why.  Kids can get pretty nasty side effects - fever is the most common.  As soon as Anna does get a fever, they'll start her on Antibiotics since her white blood count is so low.  All in all, Anna is still doing well.  She is progressing exactly as the doctors want her to.  It is very difficult to see her in so much pain, but it'll get better.  She'll finish the Atgam this afternoon and then get another dose at 11:00 p.m. tonight.  She'll have two more doses tomorrow, transplant on Thursday and then one dose of Atgam both Friday and Saturday then we just need to get her numbers up and make sure she grafts (that the new marrow takes). Thanks for checking on us with emails and cards - we love getting them.  I tape the cards up on the walls in her room to make it look less sterile.   Oh, I almost forgot, yesterday I got to meet a little girl that had HLH and went through the transplant last September.  It was so good to talk to her mom who is on "the other side" of this whole thing.  The girl was so cute and seeing her made my day.

January 30, 2003
Day 0
Well, I had to take a day off to write - this will probably be the roughest entry I have had to write so far - it's tough to re-live what we went through on Tuesday.  To make it easier, I will start out with the end of the story:  Anna is fine.  She will get her new bone marrow tomorrow morning.  There was a delay in the OR so the marrow couldn't be harvested at the time it was planned.  The bone marrow is scheduled to arrive at around 3:00 a.m. Friday and it then needs to be go through some sort of process to remove the red blood cells.  The transplant is scheduled to begin around 7:00 to 8:00 a.m.  Anna is ready.

Here is what happened on Tuesday: In my last entry I wrote about the drug Atgam and what nasty side effects it can cause - little did I know what was ahead, but I had every reason to be nervous.  As Anna was getting the Atgam she was very uncomfortable.  I had her in my lap and she was moaning and grunting in pain.  The nurse gave her more pain medication, but it wasn't working.  During the infusion, Anna was being monitored for her oxygen saturation, heart rate and breathing.  While I had her in her lap, her oxygen saturation would fluctuate from 98 down to around 88.  The nurse was watching her closely, but her lungs were clear.  At around 2:30 p.m., I decided to try to put her back in bed.  At first, she was doing fine, but all of a sudden her oxygen saturation was dropping.  I told N. that the monitor must not be picking it up correctly, but I suggested he pick her up since she had done well sitting in my lap.  I glanced at Anna and she looked very pale and I told N. he'd better pick her up while I went to get the nurse.  Next thing I hear is the nurse yelling Anna's name and then rushing out of the room again.  I ran up to N, who was now holding Anna, and she was completely blue and not breathing.  All I remember is yelling her name and moving her arms, patting her face - anything to make her respond.  She was completely limp.  It felt like forever before doctors or nurses showed up, but according to my mom, who was outside Anna's room, it wasn't even a minute.  I don't really remember what happened next - all I remember is that my whole body was shaking....  They did get Anna breathing again in her room, but had to take her down to the PICU to put her on a breathing machine as she was not able to breathe sufficiently on her own - that I was scared doesn't even touch how I felt.   Finally, we got to see Anna and it was tough - it brought back all the emotions from when she had pneumonia and was on the breathing machine back in December.  They also needed to do a CAT scan to see if there was any bleeding on the brain that could have caused Anna to stop breathing. Before we started this whole process, the one thing I wanted to avoid was the PICU just because I knew that if Anna ended up in the PICU she would be very sick plus she would be out of her pressurized room that protects her from infection.  Luckily, by around 9:00 p.m., they were able to remove the tube and Anna was breathing on her own.  The CAT scan was fine and the doctors believe that the Atgam probably caused some sort of seizure that caused Anna to stop breathing.  She was supposed to have three more days of Atgam, but it was immediately decided that she would not get anymore.  On Wednesday morning, I brought Anna back to her "old" room.  She even cracked a smile.  She is such an amazing little baby.  Yesterday and today Anna has been fairly comfortable and slept mostly.  I can't imagine how tired she must be from all the chemo, the Atgam, being on a breathing machine, etc.   I spoke with another mom today whose son is also here for a bone marrow transplant (there are three kids, including Anna, here in the Bone Marrow Transplant Unit) and we agreed that they (doctors) can only prepare you for so much.  It is so hard to describe how tough this really is.  To make our children healthy, we have to put them through a process that nearly kills them and make them feel horribly ill.  The only way to get through is all is to take one day at a time and to focus on - "this is for a cure."    We feel so fortunate and lucky to have Anna as our daughter - she is so strong and a true inspiration to us all.

January 31, 2003
Day 0
At 12:05 p.m. today, Anna began the infusion of her new bone marrow.  The bone marrow looks red like blood and it was in a large syringe and was infused, by a nurse, into Anna's Broviac.  At 12:14 p.m. the syringe was empty.  Really amazing how it all works -- the bone marrow will "know" where to go.  Now we will wait until Anna's blood counts start coming back up which can be a couple of weeks.  In a way today signifies a second birthday for Anna - a new chapter in her life and it feels very good.  We also found out that yesterday that the donor had to go into the operating room twice to get enough marrow for Anna.  They did not get quite enough the first time and then had to ask the donor if he could go back in again - which he (thankfully) agreed to.  I keep on thinking about the donor and what a wonderful thing he has done for Anna and for us.  Here he is willing to go into the ! operating room (twice even) for someone he does not know -- all he knows is that the marrow will go to a 5-month old girl.  I don't even know what to say....