2/21/03

We braved the downpour yesterday for clinic in Houston.  We reported to the Bone Marrow Transplant clinic through last week and returned to the Cancer Clinic yesterday.  Doctors and nurses there all agreed that Erin had set the record for recovery from tandem BMT at Texas Children's.  Her counts remained so good, in fact, that the doctor is scheduling radiation to begin next week, rather than waiting the usual six-week post-transplant period that it usually requires.  Unless something strange happens, we have been cleared to do radiation here in Bryan.  I will let you know more after we talk to the radiologist.  Erin will have a bone scan, CT scan, MIBG scan, and bone marrow aspiration during spring break.  Let's hope for all clear!

2/18/03

Erin's ANC and white blood count were both in the normal range yesterday, a sign that she has engrafted her transplanted stem cells.  Her platelets have also gone up steadily and are close to the normal range.  Hemoglobin is still hovering right below low normal, but are just fine for this point in treatment.  We are thrilled to be living a fairly normal life!

2/15/03

We had an extremely good clinic on Thursday.  Erin's platelets were twice what they were on Tuesday and her hemoglobin had gone up as well.  This meant no transfusions (another patient who recently went through exactly what Erin did has had ten platelet transfusions, post transplant, where Erin has only had one).  We got permission to have blood labs done locally on Monday.  If everything is still okay, we are done with the Bone Marrow Transplant unit and will return to the care of our original oncologist at the Cancer Clinic. 

Erin made it to school and the class's Valentine's party on Friday and will sing with the Children's Choir at church tomorrow.  She resumes dance on Monday.  All in all Erin has plenty to sing and dance about.

Some of you have asked if Erin is through with treatment now.  I wish I could say yes.  What I can say is that the transplant was the last scheduled hospitalization.  Erin will have scans done in a couple of weeks, followed by radiation to the original tumor site.  Then she will take six months of oral chemo and a series of tumor vaccines.  So, although we are only about halfway through the total treatment package timewise, we have done the most grueling part and will be mostly in Bryan for the next many months.  Hopefully, the next round of scans will show her with No Evidence of Disease (NED), and the remaining treatments will just be precautionary.

2/12/03

We're home!  Our last day in the hospital, Erin had one of the most experienced nurses on the unit.  She said that Erin was the only patient she had ever discharged from the Bone Marrow Transplant unit who had no medicines to take at home.  We will still have to go to clinic a couple of times each week, but for now thingseare going well. Erin will have scans in a couple of weeks and then have radiation on her original tumor site.  I will keep you informed.

2/10/03

Erin's condition is progressing very well.  She will go without IV nutrition tonight to see how well she does supporting herself with her own eating.  Her ANC popped up to 2600 and her platelets held steady, so no transfusion today.  We watched Chitty Chitty Bang Bang while we ate Chinese food for lunch.  On the whole, a very promising day.  The doctors will make the decision about us coming home sometime tomorrow afternoon.  I'd say we have a small chance of coming home tomorrow, but if not then, almost certainly on Wednesday.

Thanks to everyone for your prayers, thoughts, calls, cards, gifts, e-mail, and e-greetings.  It really helps to know you are all thinking of us.  See you soon.

2/9/03

All right Erin fans.  Drum roll please.  Her ANC was 530 this morning.  Officially, not neutropenic anymore, and definitely headed in the right direction.  The in-service doctor (the one who will discharge us) changes tomorrow, which could be good news or bad, depending on who we get and how they think Erin looks.  She is definitely feeling better than she was and is willing to nibble and sip, but she is also still making plenty of mucous.  Her hemoglobin finally dipped just below the tansfusion cut off, so she is having a red-blood transfusion right now.  She will probably need platelets tomorrow.   Nevertheless, we will definitely be home for Valentine's Day.  How much earlier depends on this new doc's opinion.  Erin is not little miss cooperative with her doctors (though she is not nearly as fierce as she was in December).  She placed a hang tag on the door knob about three days ago, and only let's people in who know the password.  And she doesn't share the password with everyone.  And she changes it everyday in case there is a leak.

2/8/03

Erin's ANC moved from 0 to 40 today.  This is really good news!  Remember she has to have over 500 for 3 days in a row for us to be discharged.  Erin is eating a smidge more.  Her throat doesn't hurt as bad, but the mucous makes all the food taste funny.  His Grace Foundation provide a very nice brunch this morning for all the patients and their families on our floor.  Davis was in a chess tournament at Bellaire High School today.  I got to pick him up and bring him to the hospital.  We were blessed to have dinner as a family this evening.

2/7/03

Erin may start feeling better before too long.  Her blood count this morning showed production of some monocytes, which are the leading indicator that her blood will start producing neutrophils soon.  When that happens her white count and her ANC will start going up, which means her body will begin to fight the mucositis and help her feel better.  She has eaten a bit of banana this morning, a good start.  There is no specific end in sight, but we are hoping to be home by Valentine's Day.

2/6/03
Erin's temperature went above 101F this morning about 5:00.  That meant that the staff will take and process blood cultures until she goes a day or two without fever.  Her white counts are still virtually zero, so the fever could be caused by that rather than an infection.  We will just have to wait and see.  Hemoglobin and platelets are still holding at acceptable levels.

Erin was up for one game of Mother May I in the hall with Aunt Kat before she returned to Dallas.  We finished The Voyage of the Dawn Treader a few minutes ago and are now going to do our nightly ritual of watching back-to-back episodes of The Bill Cosby Show on Nick at Nite.   Then we will listen to Waltzing with Bears sung by Priscilla Herdman and go to bed.

2/5/03
I haven't really updated you about Erin's blood counts lately.  Yesterday (Tuesday), her platelets had fallen low enough for her to receive a platelet transfusion.  It was very effective and bumped her platelets up to 115,000.  So far, her hemoglobin has held much steadier than I thought it would, and she may escape without needing red blood.  The white blood count is still in the doldrums, but she started G-CSF yesterday, so maybe those neutrophils will start buiding up in a few days.  Erin has some soreness in her throat and like her white counts is physically in the doldrums.  She should start feeling better when her counts start inching back up.

2/4/03
Aunt Katherine arrived today to help us through the next few days.  Erin can't really eat because of mucositis and the sore throat it gives her.  She will be receive nutrition support through her IV at night. 

2/3/03
As expected, now that Erin's counts have fallen and the effects of the Melphalan and TBI on her system have kicked in, she is feeling fairly lethargic.  Mainly, she has thick mucous in her mouth and throat that makes her throat sore and makes swallowing difficult.  No fevers, so far.  She has spent most of the day watching "Swiss Family Robinson," listening to Harry Potter and the Goblet of Fire, or listening to me read.  We have three reading projects going:  The Voyage of the Dawn Treader (book 5 of The Chronicles of Narnia),  the fourth Mary Poppins book (Mary Poppins in the Park), and our Berenstain Bear collection (we have almost as many as Barnes & Noble does).  The Rice basketball team stopped by for a visit right after lunch, and Erin got a t-shirt that she has promised to share with Davis.  By the looks of it, they can comfortably wear it at the same time.

2/2/03
It has been a pleasure to have Davis and Walter in for a visit.  We played games and hung out.  Erin's dance instructor, Miss Anne, and her fiancee, Jason, came for a visit yesterday evening.  Erin practiced the new steps that were added to her recital pieces when she wasn't there last week.  Davis and I ran to the store this morning to buy a CD that had "I Could Have Danced All Night" from My Fair Lady (ballet routine) and "One Singular Sensation" from A Chorus Line (tap routine) so she could practice here at the hospital. 

Her counts haven't hit bottom yet, but they are getting close.  Erin is still eating a little and is able to sleep fairly well at night.  We are hanging in there.

2/1/02
Erin's blood counts are falling now.  She is not yet so low that she has to have transfusions, but we are entering the phase where her natural immunity is compromised.  The doctors pump broad spectrum antibiotics and antifungals into her to help protect her.  The main side effect she is experiencing now is mucositis.  She makes a lot of very thick, very sticky spit.  This can make it difficult for her to swallow, upset her stomach, give her diarrhea, or lead to ulcerations anywhere in her digestive system, but so far, it has only made her spit a lot.

She spent most of the morning yesterday in the playroom, mainly listening to The Prisoner of Azkaban and playing Kerplunk.  Walter and Davis will arrive about noon today, and Moo will go back to Bryan.

1/31/03
Erin had a low key day yesterday.  Although the stem cell replacement was quick, the nurses monitored her about half the day (1:00-8:00)--blood pressure, temperature, heart rate, ozygen saturation, and so on.  This kept her tied to the room, but since she felt sort of sluggish anyway, it was okay.  Now we are focusing on letting those champion stem cells do their job.

If you send an e-mail or e-greeting, tell us your favorite valentine's memory.

1/30/03
Today is stem cell day!  The blood folks have changed the time to 2:00.   This procedure lasted about twenty-five minutes when we did it in December.  The cells go into her central line, just like when she receives a blood transfusion.  The only side effect she had last time was that for a day her breath, sweat, and other bodily output smelled vaguely like creamed corn with garlic (the smell comes from the substance used as a preservative when the stem cells are frozen).  We both like creamed corn, so it is no big deal. 

The last TBI treatment had highs and lows yesterday.  Erin got permission to ride her bike (Thanks Mark and Robert)!  She was quite a sight--peddling down the hall, out of the unit, through the lobby, and down the sidewalk to where the ambulances park.  Even better, she rolled through the lobby of M.D. Anderson and through the halls, right into the radiation room.  This would have been a perfect end to the process had we not forgotten Rosie (the bear), in our excitement to helmet up and get on the road.  Erin adamantly and loudly staked out the position that she could not possibly take radiation without Rosie.  I knew my years of running track would pay off some day, just not in this way.  Anyway, I dashed out across the Texas Medical Center, across streets, up and down elevators, and brought Rosie back just in time.  Whew!

Thanks to everyone for their prayers, greetings, and support!  We couldn't do it without you.

1/29/03
Erin rallied yesterday.  General Tso's chicken for lunch!  But the highlight of the day had to have been when Walter arrived with her bike from home.  She must have made 60 trips up and down the hall, some times (before and after radiation) without her IV pole, but just as often with Walter or me pushing the pole behind her.  I guess it was a good thing that Nurse Imperious was off duty yesterday, or she might have put a stop to it.  As it was, I think staff and patients alike enjoyed watching Erin have such a good time.

The afternoon radiation was a bit more complicated than the previous sessions.  The techs had to block the radiation from her lungs (standard protection for this protocol), so it took quite a bit longer to get positioned, marked, and blocked.  Erin DID NOT like being marked on, eventhough they chose her favorite color (green) to make the little dots no her chest and back. This morning was a regular session, but she will have long blocks again this afternoon.  That is our last treatment.  She is scheduled to receive her stem cells at 10:00 tomorrow morning.  Then the waiting starts.

For those of you keeping track, Erin's blood counts are hanging in there.  Her hemoglobin and platelets are lower than they were the day before transplant last time, but her white blood count and ANC are higher. 

1/28/03
The treatments are catching up with Erin a little bit.  She hasn't been sick since early yesterday evening, but she is not really willing to take the risk by eating very much.  We finished the chemo part of treatment on Sunday and are half way through the TBI (just three more trips to M.D. Anderson).  We are almost through reading Prince Caspian, the fourth book of The Chronicles of Narnia series

The staff is going crazy around here.  Apparently, the hospital version of OSHA is coming for an inspection soon (maybe tomorrow), so everyone is rushing around tidying up, fixing up, and generally getting in a frenzy.  There are deep floor cleaners stinking up the place, and even painters doing touch ups.  Someone came in and counted every piece of linen in our room last night right at bedtime--every washcloth, pillow case, sheet, and towel.  The Charge Nurse came in this morning and demanded that we put the room back the way it was supposed to be, so that we wouldn't be a danger to ourselves.  Hopefully, things will get back to normal by the end of the week.

1/27/03
TBI went smoothly this morning.  Transport picked us up about 6:15, and we were back to the room by 7:45.  They will pick us up again at 4:30 this afternoon.

The good things: 

• Erin was unhooked from her IV pole for a couple of hours 
• She was  very still and very brave, so the process went smoothly 
• She listened to Harry Potter during the treatment 
• Rosie (Erin's best bear) stayed right by her head the whole time
• The technicians said she cooperated better than the 18 year old they did right before of her (Parents of Teenagers, are you surprised?) 

• The ambulance ride was bumpy (but not scary), and there weren't seat belts 
• Erin has had a tender jaw (which should go away by tomorrow) since we got back 
• She has also been squeezy, with a little vomiting (this should also fade after a few treatments) and not too hungry

1/26/03
So far, so good.  Erin received her second dose of chemo yesterday evening and never missed a beat.  She has had glorious fun with Annabelle and Aunt Elisabeth--lots of tricycle riding up and down the halls, foosball and basketball, games like Kitty Corner and Yatzee, and of course lots of play with horses and barbies.  They will be back this morning, and no doubt we will all find something exciting to do to pass the time. 

Erin has one more dose of Melphalan scheduled for tonight.  This chemo has two strange things about it that we haven't encountered before.  First, the nurses want Erin to eat popcycles, juice bars, or ice cream the whole time she receives the chemo (only fifteen minutes, but what the heck, it's nurses' orders) to protect the inside of her mouth and reduce mouth sores.   The second is that we have to take care to wash off anything that Erin secretes for the next few days (spit, sweat, sneezes, etc.) because Melphalan causes a high level of skin irritation, not just for Erin, but for anyone it contacts.

Tomorrow, Erin begins total body irradiation (TBI).  She will receive 2 Gys (I'm sorry.  I don't actually know what that stands for, but it is a measure of radiation.) twice a day for three days in a row (a total of 12 Gys).  She will receive this treatment down the street at M.D. Anderson.  There isn't a convenient way to get there, so we will ride there and back in an ambulance.  I'll let you know if this is exciting or scary.  Erin will have to lie still for fifteen or twenty minutes, and no one can be in the room with her during the process.  We can watch her on a monitor and will have an intercom to talk to her.  The whole thing makes me nervous, but I'm sure we'll feel better after we have done it once.

Walter made it home in time to celebrate with Davis, who won the chess tournament he played in yesterday!  The dogs, I hear, miss us terribly.  Luke has moped around continuously, and Uma was forced to chew up a pencil so she could release all the good Erin smells it had in it.

1/25/03
We made it to Texas Children's Hospital with enough stuff to support an army on maneuvers.  We are settled in Room 848 (832.826.0848).  Erin had her first dose of chemo around 6:00 last night, and everything ran smoothly.  Davis is playing in a chess tournament today.  Walter is headed back to Bryan, and my sister Elisabeth and niece Annabelle are coming to keep us company.

1/23/03
A special thanks to everyone who gave blood for Erin and to everyone who would have if they could have! 

Erin passed clearance for admission to Texas Children's Hospital tomorrow.  She will begin three days of Melphalan, followed by three days of total body irradiation.  Next Thursday she will have an infusion of her own stem cells and begin the waiting process, no day of rest this time.  The doctors tell us that we should be prepared to stay three or four weeks.  I am hoping to be home for Valentine's Day.

When we get settled I will post our room number and phone number.