1/1/03
Merry Christmas and Happy New Years!
We have been especially blessed this holiday. Erin feels great and has played enthusiastically with various friends, relatives, and neighbors. She was excused from clinic in Houston for the whole week this week, because she has recovered so well from her treatments. She will continue to check in at University Pediatrics for blood labs a couple of time a week.
12/24/02
Erin had a great clinic yesterday. Her ANC was high enough (16,000) to stop the G-CSF, and her platelets and hemoglobin had both held steady since last Friday, so no transfusions. We will check counts in Bryan on Friday, and won't have to go back to Houston until next Monday. It's a good thing that she she didn't have a very long stay at clinic and that she won't have to go back very often. Her patience with the hospital is growing very thin.
12/21/02
We made it home around noon yesterday. Erin (and her parents) feels great.
12/19/02
We are on a roll. Erin's ANC had grown to 1100 by this morning. Her hemoglobin actually went up slightly as well, and her platelets (usually the last to recover from this type of procedure) only went down a little. She will receive a platelet transfusion tonight, even though she hasn't dipped too low, so we won't have to worry about platelet counts over the weekend (and so we don't have to wait around all day tomorrow for blood). We should be home some time Friday afternoon.
We will still have to come back (probably once a week) to clinic, but will have close to a month before we have to come back for our second stem cell replacement procedure. I will update the web site each week after our clinic visit and in between if there is anything interesting to report.
Thank all of you for your faithfulness and support. Please enjoy the holidays and try to appreciate the simple gifts that each of us have.
12/18/02
Special thanks to Kalli and Meagan, two sisters from First Colony, who visited last night and brought many special gifts from their Aggie and Blinn friends, who wanted to do something special for Erin. Erin was all smiles. Those smiles continued today, when we learned that her ANC had grown to 220 overnight and THAT WE WILL BE DISCHARGED FRIDAY, barring unforeseen complications. WOW!
12/17/02
I am glad Erin is feeling better so that she could enjoy the various special guests that have been on the floor. Yesterday Santa dropped by to have his picture with Erin and so did Tara Lipinski, the ice skater. Today, people from the FBI came by to sing Christmas carols (I got a picture of this strange, but melodious group). Erin is having another platelet transfusion today, but the outstanding news is that her ANC has begun to inch its way up (now 30, instead of zero).
12/16/02
Yesterday afternoon's Reader Rabbit session was not a fluke! Erin woke up this morning feeling better than she has in quite some time--much more energy, many more smiles. She is even back to nibbling a little bit. The doctors were quite pleased when they came around for rounds. Although Erin's counts have not started to recover yet (she will have a whole blood transfusion shortly), the doctors said that rising counts usually followed improvements in overall health. This means that unless something really unusual happens, we will make it home before Christmas. To be discharged, she has to drink a little (working on that), have no fevers (doing well on that, so far), and have an ANC of close to or above 500 (still a stretch).
We have been here for 2 weeks, and it seems much longer to be away from all of you who are such an important part of our lives. Thank you for being so faithful and supportive!
12/15/02
We enjoyed having Walter and Davis in for the weekend. Erin was pretty clingy the whole time, but Davis and I got away for a little Christmas shopping on Saturday. Erin is still not eating, but she is maintaining her weight and getting her nutrition through her central line IV. I think she will start eating when her throat feels better, and I think her throat will feel better when her blood counts start going up. Erin's ANC (Absolute Neutrophil Count is a component of the white blood count and also the number the doctors watch before they will discharge us) is still virtually zero. She has not yet had to have a whole blood transfusion.
Saturday was much like Friday. Erin mainly did passive activities like watching videos, listening to CDs and books, and cuddling up with her parents. This afternoon she actually played Reader Rabbit on the computer for over an hour (ALL BY HERSELF) and I got a break from being entertainment central!
Good luck to everyone involved in semester final exams (either side of the desk) and to everyone who is still working on holiday preparations!
12/13/02
Thursday wasn't the best day Erin has had. Friday has been better, but I didn't want to jinx our luck by announcing this too early in the day on Friday the Thirteenth. She may have some sores down in her throat that cause pain when she swallows. Unfortunately, our little tough-as-tigers Erin is obstinate and won't use the mouth rinses and gargles that could help this situation. Her white blood counts are still stuck near the bottom, but she is still fever-free. She had a platelet transfusion today, which went very smoothly. I imagine she will be ready for whole blood by tomorrow or Sunday.
I hope everyone is doing well. We are hanging in there.
12/12/02
Erin's counts are still headed in the wrong direction, but so far she has avoided most of the major complications from having such intense doses of chemo last week. She has had a couple of visitors :) and is sleeping well at night.
The votes for Favorite Christmas Song poll have dwindled down, so we are thinking of starting a new poll--Favorite Holiday Story or Book. Pam Engler visited yesterday and gave us this idea. Her favorite book is Emmet Otter's Jug-Band Christmas.
12/11/02
Not much to report. Walter got back to Houston yesterday which we were very happy about. Erin is eating small amounts and does better in the afternoons and evenings, rather than the mornings (is she turning into a teenager from this transplant?).
12/10/02
With 67 participants, here are the results, so far, of the Favorite Christmas Song Poll:
8 votes:
O Holy Night
Silent Night
6 votes:
White Christmas
5 votes:
Jingle Bells
4 votes:
Rudolph the Red-Nosed Reindeer
Away in the Manger
3 votes:
Jingle Bell Rock
Joy to the World
Angels We Have Heard on High
2 votes:
It Came Upon a Midnight Clear
Do You Hear What I Hear?
Silver Bells
Sleigh Ride
What Child Is This?
1 vote:
O Little Town of Bethlehem
The Pretty Little Dolly
The First Noel
Deck the Halls
Go Tell It on the Mountain
Infant Holy, Infant Lowly
God Rest You Merry Gentlemen
Lo How a Rose Ere Blooming
Please Come Home for Christmas
Walking in a Winter Wonderland
Have Yourself a Merry Little Christmas
I Heard the Bells on Christmas Day
I’ll Be Home for Christmas
Frosty the Snowman
Blue Christmas
Grandma Got Run Over by a Reindeer
I’m Dreaming of a White Christmas
Christmas Time is Here
Mele Kalikimaka
No favorite songs–the Grinch
The variety of answers is really amazing. Many of these songs evoke favorite memories and special people for the respondents. Others have meaningful lyrics and/or beautiful melodies. Thank you for voting.
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Creamed corn it is! Erin is slowly but surely progressing. The infusion of her stem cells went well yesterday. Her counts, as expected, continue to fall, but her energy and interest level have perked up a little. We are listening to Harry Potter and the Chamber of Secrets, reading Hank the Cowdog books, and working on a green and red paper chain for our home Christmas tree. Over the next few days, Erin will be susceptible to infections and will probably have mouth and throat soars that could be quite painful. We will hang in there.
We had three separate deliveries of e-greetings yesterday. Thank you for expressing yourselves in such heartfelt, eloquent, and uplifting ways. For those of you new to the process, we do not receive your contact information with the greetings, and can not easily reply. Remember, even if you never hear from us, we really, really appreciate that you took time out of your day to let us know that you were thinking about us.
12/9/02
Erin seems to have her nausea under control now. She had half of a Whopper Jr. and fries yesterday for lunch and a sausage kolache for breakfast this morning (though not much in between). She will have her stem cell infusion infusion around 1:00 this afternoon. I believe this is a 20 minute procedure that is like receiving a blood transfusion. Supposedly, the main side effect is a bad odor (that comes from the substance used as a preservative when the stem cells are frozen). Apparently, the smell will exude from Erin's breath, sweat, and other bodily output for a day or two. Some people say it smells like creamed corn. I will let you know.
Tomorrow she will begin receiving daily infusions of G-CSF (which should receives normally after each round of chemo) to help the process of building her white blood cells back up. Her blood counts will stay very low for a while: she will be at risk of infection and need whole blood and platelet transfusions. Eventually, her counts will recover and her new stems cells will take over the process of producing blood for her. When this process stabilizes, she will be considered "engrafted" and she can go home. If she has no complications, this could happen in 10-14 days.
12/8/02
Texas Children's Hospital and its legion of volunteers really make an effort to make the patients' stays pleasant. Although Erin didn't appreciate the effort too much yesterday, I must tell you about the various volunteers that came by yesterday. One group came by with Winnie the Pooh and brought Erin a very pretty baby doll. Another group sang carols in the hall. A third group, Chandler's Tree Farm, is organized by a family who lost a child (Chandler) to cancer and serves the Bone Marrow Transplant unit exclusively. They brought a good lasagna lunch for all the patients and their family, as well as Christmas trees with decorations for every patient room, and had Santa deliver gifts for all the patients and their siblings. Erin was a recipient of 5 or 6 presents, including a nice CD/cassette/radio. The day before, His Grace Foundation (also organized by parents of a deceased child and also exclusively serving the Bone Marrow Transplant unit) brought an enormous basket of goodies to ease our lengthy stay. They will also shop for parents who can't get out and provide a free parking pass for patients. I will put contact information for these organizations on the How You Can Help link.
Erin may have turned the corner, at least on the nausea and vomiting. She hasn't been sick for almost 14 hours. She is tired and not particularly happy but seems to be resting easier. It will take a little longer before she trusts her stomach to eat or drink anything, but I am hoping she will later today.
So far, White Christmas is leading the polling, with about twenty other songs competing. We will give it another couple of days before we post results.
Thank you for your faithfulness.
12/7/02
Yesterday stayed pretty much the same as it started--pretty rough. We are looking forward to our day of rest on Sunday.
12/6/02
Erin rallied yesterday around lunchtime. We made a pair of key lime pies in the family room kitchen: one for her surgeon, Jed Nuchtern, and one for Walter and Davis who will be here this evening. Then we read the more than 70 e-greetings that were delivered yesterday afternoon (for some reason they weren't delivered earlier). It took about an hour and a half to read them, record the results of the Christmas carol poll, and stick them all on the walls as decoration! We'll give folks a couple more days before we post the results of the poll. Very eclectic, so far.
She had a bit rougher night last night, as the cumulative effects of the first three days of chemo have begun to kick in. The worst chemo, Carboplatin, ended at about 2:00 yesterday afternoon, and the largest dose drug, Etoposide, will end at noon today. Perhaps she will be able to turn the corner today or tomorrow.
12/5/02
Erin started out a little squeezy yesterday morning, but by the time her Moo got here around 12:30 she had perked up considerably. We got special permission to go to the ninth floor playroom, where we played Candyland and Chutes and Ladders. She saw How the Grinch Stole Christmas (the original) last night for the first time. Two days of chemo down, three to go. This morning is starting out the same way as yesterday. So far today, Erin doesn't feel very hungry or energetic.
12/4/02
The chemo drugs Erin will take this week are the same ones she has had in the past, just in much larger doses. She is taking five times as much Etoposide, three times as much Carboplatin, and twice as much Cytoxin. She ought to feel pretty good for a day or two, but then she will probably feel "squeezy" for awhile. Tuesday was a pretty normal day. Erin did some school work, played in the playroom, watched Tom and Jerry, and won a(nother) teddy bear in the Radio Lollipop craft contest. She wants all of her friends to know she is thinking of them.
We are taking a poll. Send us an e-mail or e-greeting telling us your favorite Christmas song and/or your favorite Christmas album.
12/3/02
Everything checked out with Erin at clinic yesterday. She still has a little fluid in her lung, but not enough to stop treatment. By the time we finished with everything it was too late to start anything. So, they let us move into the room and then go out to dinner together. Erin got to spend the last night for a while without an IV pole attached, and I got to sleep through the night without having to make bi-hourly bathroom trips. Today she will start the first of five days of chemo.
Erin can have visitors, as long as they are healthy.
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We have enjoyed the respite from the hospital quite a lot. Erin went to see The Santa Clause 2 last night with her Aunt Elisabeth and cousin Annabelle, and we have been blessed with good outside weather. The following is a description of what will happen next in Erin's treatment plan.
While the surgeons removed everything from Erin's abdomen that they could not positively identify as healthy tissue, it is possible that microscopic neuroblastoma cells still remain. Also, although the bone marrow aspiration pathology report came back negative indicating no tumor cells, that is a statistical conclusion, not an examination of every single cell. Therefore, the follow-up treatment is designed to get at every last tumor cell that may be hiding in her body.
The first stage of that is stem cell replacement (also called autologous bone marrow transplantation). That is scheduled to begin December 2. If Erin meets the lab criteria (blood counts and chemistry), she will be admitted to the 8th floor at Texas Children's and begin five days of high dose chemo therapy, followed by one day of rest. She will receive 3 drugs (carboplatin, etoposide, and cytoxan) she has had before, but in larger doses. The chemo will drive her blood counts down, approaching zero. After the rest day, Erin will receive a transfusion of her own stem cells. The remainder of the hospitalization will be waiting for her blood counts to recover (the doctors estimate this will take another 10-14 days, though perhaps longer). During this time she will be at extreme risk of infection and will probably feel a variety of side effects from the chemo, like nausea and mouth sores. She will receive whole blood and platelet transfusions, as needed, and IV antibiotics. When her ANC reaches 500 three days in a row, the doctors will consider her transplant engrafted and she will be discharged. She will still have to visit the bone marrow clinic on an outpatient basis to monitor her blood counts.
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