History

Journal History

Monday, January 19, 2004 1:35 PM CST

Libbie is post transplant (7/2/02) and not considered to have relapsed but rather been re-diagnosed with JMML. She has consistantly maintained 100onor cells. She engrafted very quickly after transplant and just didn't stop.(hence myeloproliferative disorder) Libbie started FTI in November and has had good but limited success. Her white count after transplant would range between 60-90k, platelets between 600k and 1.5 mil. Being on FTI actually made her counts all fall into a normal range for a time (never in her life has she had "normal" counts!!) Anyway Last week her platelets went to 3.1 million...and her white count had been creeping up to almost 40k. She is on Agrylin (since 11/01) to help control platelet counts and function. Friday her white count was 16k and her platelets down to 1.7 mil. Her marrows still tells the JMML (MPD) story though ...fiberous, lots of megamyelocytes...TIRED! We continue on FTI to see if it can in fact "retrain" her marrow to behave....I have a little info on FTI if anyone wants to ask me questions..You might want to copy me an email to my email address as well as posting here...that way I can answer you faster...

Thank you all who continue to pray for Libbie and our family..It is the reason, I am sure of it, that she is still here. What an amazing CHILD!!!

Friday, October 3, 2003 11:59 AM CDT

Well...We are still battling the same things as last entry..Trying to find something that will help Libbie stop proliferating white cells and platelets. Both the Gleevec and cis-retinoic acid were not successful. She has been rediagnosed with JMML but continues to have 100% donor cells. We are looking into the FTI drug study. Libbie has been accepted into it and we are doing a little research before we go ahead.... Libbie is doing really well for the most part!..She seems to have good energy. She is growing and thriving.... just don't look at her blood! She started Kindergarten in August and LOVES IT!!!! We have an apointment in Houston next week to talk to her doctor about the FTI and to get her counts etc. I will try to update a bit more often. It hard to write things when there is no new news!

Monday, May 19, 2003 3:32 PM CDT

I am sorry for being such a stranger...I have been reading to try to
catch up on things and there are certainly lots of new members! I
will update a little on Libbie. Please ask any questions that you
need to. There seem to be some other kids with some similarities to
Libbie....NF1, tumors in the brain, etc...., and Libbie also has
her "little hand" which falls under bone anomoly in the NF1
category. My son, Buster, who is 3 also has NF1 and PDD(pervasive
developmental disorder) and ADHD. He does not speak at all but is
currently (as we all are)learning sign language as a form of
communication. He just had his blood checked for anything WEIRD and
thank GOD, everthing looks normal. I always have in the back of my
head that he will have JMML too...GOD forbid!! Any way..Libbie has
never really wanted to follow the rules...She is basically in the
same position as before she went to transplant. She is proliferating
cells like crazy. Since she doesn't have a spleen anymore they roam
freely around her little body instead of being trapped there in the
spleen. Her liver doesn't seem to be enlarged which is GOOD. She has
continued to have 100onor cells. If she had had a loss in her
donor cells it would be called relapse. But since her donor cells are
all there and no Libbie cells are there that is not what it
is.....The theory is that it is the environment they live in, or the
stroma, that is the problem. No matter what marrow you would put into
her the environment would make it behave like JMML.
Someone out there answer me this. Have your docs talked about the
many faces of JMML??? Like these are really all different diseases?
Like Colby's JMML and Libbie JMML would be two different kinds?? OF
course no one really know at this point. Although SO MUCH MORE is
known just since Libbie was dx in Feb of 99. Jake Prater and Libbie
were dx I think just a day apart. We live within about 3 or so hours
within each other and also Mimi's son there in Houston. Makes me
question the environmental thing.... Dr. Bunin also has her lion's
share of JMML kids there in PA.

Anyway, Libbie was started on Gleevec 3 weeks ago. She is just not
improving on her own. At the time her wbc was 70, platelets were
700's and her hgb had been dropping....8.3.
Last week after being on it for 2 weeks her wbc was 37, hgb 9.4 and
platelets wer 1.07 mil. She has really been having trouble with those
darned platelets....She is also on Agrylin to help with that....We
continue to pray that the Gleevec does something good!

Monday, January 13, 2003 at 11:03 PM (CST)

I am so sorry for not updating more...for some reason I have not been able to make myself talk about this much. My own way of dealing with things I guess.
Libbie seems just fine, but her weird counts say something totally different....WBC 54k after her Prednisone dose tapered down to 2.5mg a day. Her WBC 10-14 days ago was over 100K. Platlets are down from 1.3mil to 971k. She takes Agrylin to lower platelets, but for some reason they just aren't coming down as fast as we would like. She has minor gut GVH here and ther but nothing too serious. We were in Houston last Tuesday and Dr. Chan said that her labs say she has JMML but he doesn't think she would meet all of the clinical criteria for having it. He doesn't use the word relapse. She still has 100% donor cells. We have gone as far as tracking the donor to see if he has leukemia or a myeloproliferative disorder. He is 4 years 2 months old and has been given a clean bill of health. It is still believed that both of my children have NF, neurofibromatosis, and it may be what is putting a weird spin on Libbie's situation. My son also has "issues" because of NF that we are trying to deal with right now. Dr. Chan asked us four to go to Houston and give blood samples to enter into another study being done on JMML in San Fransisco by a Dr. Shannon. It has something to do with JMML, Monosomy 7, NF and some other factors. If we don't hear back from them at the end of a month Libbie will be started on Gleevec....I will get the info on that Dana and see why he thinks it might help Libbie and send it to the group....If the Gleevec doesn't work we will then go to Interferon...Yuck...He said it would feel like having a bad flu all the time.....I am sure that is just a NICE way of putting it.....I'll let you know when I know something new....

Thank you all for your continued support.

Say lots of prayers for these amazing children and their just as amazing families...

Colby, we love you man!!
Jake, 100% again, please!!!
Connor, Keep the faith!
Luke, you're the little engine who could! (Thomas)

Please keep praying for ALL of our JMML families.....PRAYER MOVES MOUNTAINS!!!

Friday, November 22, 2002 at 15:19 PM (CDT)

Day 143
******CHECK OUT NEW PICTURES !!!******
Well we are really serching now for reasons why Libbie's counts are so weird. She has had another 100% donor cells but now THEY are starting to act like her old ones. Her bone marrow is proliferating cells like crazy. WBC 67 Platelets 700+. From what I understand all the cultures and BMA biopsies etc. they have taken in the last 3 weeks shows that she has a definite myeloproliferative disorder but it doesn't seem to be acting like JMML now. The first time we sent Libbie's information to Dr. Casleberry in Alabama they said that she did NOT meet the criteria foa a JMML diagnosis and from then on after she did...What if she DIDN"T have JMML? I am still trying to do as much research as I can. Libbie has an appointment in Houston on Tuesday the 26th so hopefully I will understand more after I talk face to face with Dr. Chan.

Libbie was at Childrens Hospital here in Austin for eight days being treated for GVHD of the gut. Prednisolon has done a good job..Except that she is eating us out of house and home!! Other than ALL that she seems to feel fine!

Thank you Danette for the phone call. You reminded me of some things that saved me from one of the worst days I have had since all this started.

Sunday, September 29, 2002 at 04:10 PM (CDT)

100% DONOR CELLS!!!!!!!!!!!!!!!!
WAITING ON BMA RESULTS

Day +89
sorry for the time lapse between updates....Libbie is doing well. We have come home to Austin and i have just really been enjoying being here and trying to start some kind of normalcy again. Libbie and I drive back to Houston once a week for IVIG. We should find out the results of her third FISH test to see the percentage of donor cells on Tuesday. The last two have been 100%. Her WBC was 40 this last week. Still no clue as to why it is so high but we continue to watch and wait. Platelets 402 and Hgb 11.1. Nothing else really happening. I am sorry to worry any of you. I hope you are all well and thank you as always for keeping up with us.

Thursday, August 29, 2002 at 05:24 PM (CDT)

Day +58

Sorry it's taken a while to update. Libbie's white count is still high...The last week it has been 35.0, 36.6, and today it was 31.0.......Maybe it headed down a bit.....

The doctors will just continue to watch..There really isn't anything to DO...It has been explained to us several times that since she has no spleen her count might be higher. It will be normal for her but higher than textbook. We'll see what happens.

You can't tell that she has just been through transplant(except that she is BALD!). She is AMAZING! Thank you God for giving her such STRENGTH. She acts just as she did before transplant except maybe 5 years older. She even looks alot older. Where'd my baby GO?

My son has been seen at clinic for the last couple of weeks by the pedi neurologist. He is sure that Buster shows many signs of Neurofibromatosis (NF) and also presents with mild pervasive developmental disorder (PDD) and hyperactivity. He had an MRI that was clean. If you remember, Libbie has a nerve shieth tumor in her brain and her JMML and missing ulna and four fingers on her right side could also be explained by NF. My husband and I and both kids had blood drawn to check for the NF protein. (July 1st) We just found out that the lab (independent from MD Anderson) took one of the four viles, called it Libbies and tested it. It came up negative, but we don't know who it was. Infuriating to wait two months for a test result only to find out they messed up!!!!! We will have to do it all over again.

We are missing home more than ever!

Wednesday, August 21, 2002 at 01:57 PM (CDT)

DAY +50

Libbie's white count continues to rise.....35.8. All of her other numbers are good.
hgb 10.1
platelets 225
Looking at JUST the white count, you can't tell what's going on so Dr. Chan got another FISH test. It's really easy and fast when your donor was a different sex...they just look at the "girl" blood and "boy" blood. Libbie still has 100% donor cells...!!!!!Thank GOD! She having some more skin GVHD, which actually is good because it is not too severe and they say a little is beneficial. We will continue to watch her white count. Since she has no spleen she may run higher than before because it is not being filtered through the spleen. I hope it is as easy as that. Other than that you can hardly tell that she ahs gone through what she has...it is amazing and inspirational!

Yesterday was Libbie's 4th birthday. Really GOOD day!! She decided that one day wasn't enough so we have declared today her birthday also!!!! She wanted a BLUE cake so everyone's tongues would be blue! A blue birthday cake she had!!!!

We are really missing being at home. Every day Libbie says..I want to go home to Austin where MY car is parked. Until just a few days ago we used my moms car while she was here during the week and my husband drove my suburban up on the weekends. SOON my sweet girl....SOON

Monday, August 12, 2002 at 10:24 PM (CDT)

Day 41

Thank you God for creating such miracles in our life every day!

FINALLY found out today that Libbie has 100% DONOR CELLS!!!!

Her WBC is 23 no...not 2.3, 23
This needs to be watched. There could still be residual white blood cell "fertilizer"(GCSF) that's making her produce this high of a count? Don't know for sure.

Platelets are up to 120 and hgb is up to 9.9. WOW!!!!

Everything is looking good...just need to watch the counts and look for GVHD to pop up somewhere...hope not but aparently it can happen anythime. Further out you get the better but we're not that far.

It's HARD not to really want to just go home right now!!! Libbie is supposed to stay within 10 minutes of the hospital while she is outpatient. She is doing so well I just want to take us home and get our family back together. I know we have a ways to go and that it is safer for her here right now....BUT.....getting very homesick!

Loved the chat with my fellow parents of JMML kids. Thanks very much! Once a month definitly not enough.

Sunday, August 04, 2002 at 11:02 PM (CDT)

Days 27-34
Haven't been near the computer much this week. John came in this last Sunday with Buster, Libbie's 2 1/2 yr old brother and they have been here ALL WEEK LONG!!! I had not seen Buster since July 1, the day before Libbie's transplant. Libbie decided that she wanted John to stay with her again.....okay....I was so happy to see Buster I wasn;t even gonna say anything. Libbie has continued to want her daddy there EVERY SINGLE NIGHT this week. I think a very special bond was formed this week that won't ever go away. She's always been a daddy's girl but I think this week was just SO special for her! Now Buster and I just partied hard!!!! Ice cream, and a dinner date the very first night, and of course I had to hold him until he went to sleep! It is SO hard having your family split up everywhere! All in all it was a very good week. My mom, step dad, sister and nephew also came this weekend. Libbie was very happy to get to see her cousin Tyler, Auntie Beth, grandma and Paw Paw Ron. My mom will be here all this week to catch up and....

******DRUMROLL PLEASE**********

help us move out of the hospital. Looks like Libbie is being set free tomorrow (Well..put on a bit of a longer leash!) The only thing she has had running IV for the last 2 days is fluids. TPN has been stopped.Her counts have been really good except for platelets(they're last to recover) and Dr. Chan says that if she can eat and take her oral meds and keep them down she can leave on Monday. She has certainly kept her end of the bargain so tomorrow is pay up day for Dr. Chan. This mornings WBC was 6.7!!

I hardly know where to begin or end with the thank you's. Those of you who have been through this know that it takes an entire Army of caregivers to get through this. Doctors, nurses, family, friends, day IN, day OUT, 24 hours a day, 7 days a week. God has graced us with what I consider to be the top of the line in every category!!!!My family's neverending willingness to do whatever it takes...The Doctors here, Dr. Chan, this is a truly gifted man, in mind and heart,... the nurses.....Well the nurses.....the nurses can change a really bad day into a really good one. They went through ALL of the stuff with Libbie...they got thrown up on, griped at, buzzed a hundred times by Libbie because "I'm beeping!". Kind words from Monica who from the very beginning bonded with Libbie and my mom and I. She always made us feel so much more at ease....Beatrice...OH Beatrice! Can't think of anyone who could make us laugh more, no matter what the mood was at the time! Doing the little hand dance to the pumps to make sure they were behaving. Libbie's own Harry Potter and Brights band-aids to make the boo boos better. Margaret who knew Libbie had a thing for flashlights and brought her the coolest ghecko looking one !!!Then there are aides... Rita...who stood over Libbie many times very quitely...not saying a word after having finished vitals...I'm just sure she was praying for her...I consider Rita like my grandma! Trevor the best lab guy EVER. Mon, Wed, Fri Libbie gets poked about 5:30 am to check her Tacro levels......He's like a phantom phlebotomist!!!!Quickly, quietly, (almost) no pain! In and OUT of THERE!!! Very nice guy too! There are just so many people involved in Libbie's care that it would almost be impossible to get them all. Please...ALL of you involved with Libbie's care just know that we are so VERY grateful!. It's not over but it will be changing now to a different set of caregivers. I hope they can measure up to the very high standards you have set for them. We love you!!!

Sunday, July 28, 2002 at 12:09 PM (CDT)

Again, I have such fantastic news!!!! Libbie is doing so well.

Day 21 WBC 4.8 daily GCSF (White cell fertilizer!)stopped
Day 22 WBC 4.0
Day 23 WBC 3.0
Day 24 WBC 2.6
Day 25 WBC 4.0
Day 26 WBC 5.6

Her absolute neutrophil count continues to be above 2000.
Libbie was having trouble hanging on to her platelets this last week. She went down to 11 and got a platelet transfusion...after the transfusion it went to 98 and by the next morning it was 11 again. This went on for a couple of days. She passed blood clots in her urine (from low platelets?)but that has resolved. She got a single donor platelet transfusion yesterday and her platelets are a whopping 273 today!!! Thank you pastor Andy Noel. I know it was kind of a rough experience for you. We thank you from the bottom of our hearts!!! You've got some good platelets!!!

Libbie continues to get and feel better every single day! She is beeing weaned off of IV meds and starting to take what she needs orally, including TPN which is her IV nutrition. She really trying to eat. Pretzels, crackers with a bit if cheese, chocolate milk and her new favorite thing...chocolate milk shake! We have explained to her that she has to take her oral meds and start eating if she wants to become outpatient this early! She works very hard to do everything she's expected to do and I am SO proud of her. I think her attitude has an awful lot to do with her fantastic progress. This kind of thing would be very hard for an adult to do and Libbie, as always, shines through it all. If Libbie continues as she has been she will become outpatient within the next week or ten days. I am in such awe of my child. What an extrodinary gift from God we have been given. I know the JMML road won't be over for a very long time, so as I write this I am still guarded and cautious. You just never know what will happen.

Please pray for our JMML friends and their families so they may continue their courageous fight against this ugly disease. Colby, Jake, Cindy, Kayli, Brian, Zachary and Luke. The moms and dads of these children also inspire me and teach me that it is not only these children that have been given such strength but their parents and families that stand and deliver such bravery, and strength and in the face of this all. Thank YOU from ME! Becky

Monday, July 22, 2002 at 10:34 AM (CDT)

Days 17, 18, 19, 20

I thank God for the many blessings and miracles He has given us!!!

Day 17 WBC 1.2 ANC 780
Day 18 WBC 1.8 ANC 1206
Day 19 WBC 2.9 ANC 2117
Day 20 WBC 3.2 ANC 1984

Libbie was "RELEASED" from isolation on Day 19!!!! Can you believe this!! Even Dr. Chan said this was really good. She is doing so well. We weren't even expecting her to engraft until now!! Her GVH-y symptoms have not amounted to much. They did, however, do a skin biopsy on her rash on Friday. We'll get results from that late today or tommorrow. She's been having low grade fevers that require Tylenol off and on for a day and a half now. We will just continue to watch her. She continues to have pain when she tee-tees but all urine tests have come back negative. It is probably a result from her rash. We slather her up with lots of cream and it makes her feel better.

Daddy comes in every Saturday morning from Austin and stays the weekend. We have an apartment close to the hospital that we get at a discount through the apartment ministry. My mom stays there all week and John stays on the weekends. Well, this weekend Libbie insisted that Daddy stay with her in the room! From the very beginning, since she was 6 months old and all this leukemia stuff started I have always stayed with her. (I like it that way!) She wanted her Daddy to stay this time, so I was sent to the apartment to sleep for the night. I have not slept in a house alone since before Libbie was born. I must say I prefer to be with my family...I didn't like it a bit and I was actually kind of scared! I did get a good nights sleep though. There is alot to be said for 8 uninterupted hours of sleep! I will honor her wishes if she wants John or my mom to stay with her but I don't have to like it!!!!!

Thank you JMML family for you continued words of support. This is a rough road for all of us and it sure helps to know you're not alone!

Friday, July 19, 2002 at 06:27 PM (CDT)

Things are still going well.......Yesterday Libbie's WBC was .7 and today it was 1.2!!!!!She had have to get platelets yesterday and this morning at 3 a.m. got red blood. She has had pain in her abdomen off and on and it has become a little more frequent. She also still has her rash. It's appearance keeps changing so we just are watching to see what it does. She did get a rash on the bottom of her feet that the dermatologist said looked GVH-y. They did a skin biopsy of her rash and should find out Tuesday the results. They actually hole punched her skin on her side and then put a stitch there to close the hole. It was really hard for me to watch for some reason but she did very well. (Not so surprising!) Libbie likes to be in charge of things. She likes to take her own vitals(blood pressure, pulse O2, and temp), put her own EMLA cream on and even helped take the lid off of her GCSF shot. She decides where in the leg it goes. She has a freckle on her right leg and she has even had the nurse hit the freckle or FREEKLE as Libbie says. It seems like a good thing for her to have some control over a few things in her life right now when things are so out of her control!

Wednesday, July 17, 2002 at 03:30 PM (CDT)

Day 15

Can you say..E-N-G-R-A-F-T-I-N-G!!!!!!!!!!!!!

Libbie's White count is .5!!!!!!!!!
I am so excited I don't know what else to say!!!!!This means Libbie is starting to grow her new cells on her own!!We are not quite out of the woods but have reached a major milestone!!!!!!!!!!!!!!

************* YIPPPPEEEEEEE!!!!!!!!!! **************

########## THANK YOU, THANK YOU, GOD ###########

Friday, July 12, 2002 at 09:10 PM (CDT)

Well, it has been a week of ups and downs, but I think it has turned out okay. Libbie had a reaction to something Sunday. She had received Vancamyacin for a very small bacterial infection in her blood, then gotten a a red blood cell transfusion to boost her low hgb. She started itching and broke out into a serious rash. We think the reaction was red mans syndrome from the Vanc...a fairly common side effect. Libbie's skin is also breaking down quite a bit and in combination with the rash (that is still there)is pretty painful. The area around her central line has become so tender that every time she had a dressing change, just removing the tape would take layers of skin off and bleed. Not only is it very painful AND a risk for infection having that broken skin, it was a very TRAUMATIC thing for her to have to go through! (EXCRUCIATING to have to help be a part of holding your child down while this is being done) To make matters worse, the stitches securing the central line to her skin were tearing loose. One had come out, and the other looked like it wouldn't last long. When the surgeons placed her central line, they made it so that the three lumens that come out, came out toward her arm. Every time Libbie moved her arm it would pull up on that part that was stitched down. The IV team came and assessed her situation and an appointment was made to have Libbie sedated on Wednesday morning and new stitches placed to secure the part that comes out of her body. Her dressing was changed to just a simple net tank top that would hold everything to her body so that no tape would have to be used. That night at about 11:30 pm Libbie kept saying "owee, owee, owee!" I
looked at her to see what was wrong and her central line had come out about 3 inches from her chest. All meds were stopped, Xrays were taken..doctors and nurses buzzing around everywhere to once again assess the situation.
Before anything could be done the xray would have to be read to see how far the line had come out. Everybody left the room while we waited for the xrays. I fould myself in our darkened room with nothing but numbing fear. No matter how strong you feel there are these times that there is just no escaping the fear that you may lose your child. So there we were...I sat next to Libbie for the next 45 minutes and just prayed like I have never prayed before. She was on no meds at all..no pain control, no Vanc, no liquids or TPN. They found that 2 of the 3 lines in her chest had come out far enough that they were unusable. They would be able to use the one left as a peripheral for liquids and morphine and then they would put another in her hand to give her Vanc until we could get her into surgery to have another line put in. The IV team was called again to temporarily secure it to her chest so that it wouldn't come out any further. They decided that they would use that 11:30 time slot they had to restitch to use a wire to re-thread and re-place new tubes down in to her chest so that she could get the meds she needed until she could be scheduled for surgery. It ended up that they were able to get it working again AND they positioned it better and stitched it so that it pointed into her body AND the dressing would miss the damaged area of skin. A surgeon came to look at the job and said she thought they had done a good job of saving the line and she didn't want to do anything else. I agreed with her! We were all so pleased that they had done such a good job! My prayers had been answered!
Libbie continues to have a really bad rash and skin breakdown all over her body. She receives a shot in her thigh every day to help her new cells grow. Her tacro levels are measured by taking her blood from her arm every Mon, Wed, and Fri. Her throat still hurts but she was able to take a few sips of sprite today. She has refused all food and drink since 2 days before her transplant. The chemo was REALLY hard on her little body, but it is over. As bad as this stuff sounds, almost all are probably expected. No one ever said this would be easy! She continues to be the same incredible child she has always been...inspiring so many that she touches.

We are waiting for the day we can report that her new cells are growing. Doc says it could take 20 days. All things considered Libbie is doing very well and I am confident things will continue to get better all the time.

Saturday, July 06, 2002 at 12:23 PM (CDT)

Days 2, 3, and 4

Libbie is really starting to lose her hair. I asked if she wanted me to cut it and she said "no". I then asked if she wanted to just let it fall out and she said "yes". So be it !

She seems to feel a bit better than 0 & +1. I think the morphine pump helps her to be more comfortable without knocking her out. Her throat still hurts, but not as much as it did. She has frequent BM that must just be toxic because they really bother her. She has not eaten anything in at least a week. She guards her mouth with her hand like a fortress.
She is on TPN (IV nutrition)and has regained about two pounds that she lost.

Her spirits are definitely better as she has become a little more interested in movies. Some specific ones actually make her laugh out loud. It's funny how just a small laugh from your child is such a milestone!

She has been running a low grade fever and has been started on some different antibiotics to ward off any possible infection. Yesterday she had a platelet transfusion. Her platelets went from 6 to 180. Yeah! WBC .1 and her Hgb is 7.4. She'll need another transfusion to boost her Hgb probably tomorrow.

We continue to pray for the absolute best outcome for Libbie. She is SO strong. What an inspiration.

Thank you Mary Sue and Annabelle for coming to visit. It was a needed boost!!

*********************************************************
okay...it's 3:00 and we've just cut all of Libbie's hair off! It didn't take her long to change her mind when she couldn't seem to keep it out of her mouth!! She loves it! She thinks it's COOL!

Wednesday, July 03, 2002 at 08:31 PM (CDT)

Day 0, +1

The transplant went off without a hitch. It was really amazing to watch. Anticlimactic actually when you think about the last three years of anticipation. The cord blood was in a very small bag. I think it was around 28cc which is about twice the minimum amount for Libbie's weight, this is good!. Dr. Chan considers it a 5 1/2 out of 6 match. It came from St. Louis, MO and from a little boy. She is now B+ instead of A+. She fell asleep during the time that is was infusing...25 minutes from start to finish....Amazing....

Since the early morning hours her pressure has been consistantly low, or rather the bottom number has and the top number has been okay. Dr. Chan said it might be an indication of infection and we have been watching her temp and pressure closely. No fever at all today! She is still having a hard time doing her mouth care and her throat still hurts quite a bit. She is still on the morphine pump for pain control.
All in all I think she's doing very well.

I would like to take a minute to thank my family for their support thoughout all of this, because without them, John and I would be up a creek! My sister has come from Los Angeles with her son to live with us and take care of our 2 1/2 year old. Her husband travels for business often, but I know this is very hard on them to be away from each other even longer just to help us out. My mother has been a fixture in every dr.s office since the day Libbie was diagnosed and she is staying here in Houston during the week when John is at work to help me and Libbie. And of course there are just so many other people who continue to support us in so many ways, that we feel so INCREDIBLY BLESSED. Thank you ALL! We love you. -----------------Becky

Wednesday, July 03, 2002 at 08:31 PM (CDT)

Day 0, +1

The transplant went off without a hitch. It was really amazing to watch. Anticlimactic actually when you think about the last three years of anticipation. The cord was in a very small bag. I think it was around 28cc which is about twice the minimum amount for Libbie's weight, this is good!. Dr. Chan considers it a 5 1/2 out of 6 match. It came from St. Louis, MO and from a little boy. She is now B+ instead of A+. She fell asleep during the time that is was infusing...25 minutes from start to finish....Amazing....

Since the early morning hours her pressure has been consistantly low, or rather the bottom number has and the top number has been okay. Dr. Chan said it might be an indication of infection and we have been watching her temp and pressure closely. No fever at all today! She is still having a hard time doing her mouth care and her throat still hurts quite a bit. She is still on the morphine pump for pain control.
All in all I think she's doing very well.

I would like to take a minute to thank my family for their support thoughout all of this, because without them, John and I would be up a creek! My sister has come from Los Angeles with her son to live with us and take care of our 2 1/2 year old. Her husband travels for business often, but I know this is very hard on them to be away from each other even longer to help us out. My mother has been a fixture in every dr.s office since the day Libbie was diagnosed and she is staying here in Houston during the week when John is at work to help me and Libbie. And of course there are just so many other people who continue to support us in so many ways, that we feel so INCREDIBLY BLESSED. Thank you ALL! We love you. -----------------Becky

Monday, July 01, 2002 at 10:48 PM (CDT)

Tomorrow is the DAY!! Libbie's counts this morning were: WBC .4
hgb 10.9
platelets 235

They are about were the doc expected. Libbie's having a hard time right now with a severe sore throat. She been given a morphine pump to ease the pain. Can you even imagine? It is a by product of the chemo. They weren't expecting it for a few more days but Libbie started getting really bad about not doing anything orally....including her 4X a day mouth care. She would throw up even when the nurse brought something into the room. She is such an amazing child. I am so inspired by her. She is still the brave soul we've always known her to be. She misses home desperately. She has gone from "I want to go home" to "I don't understand why I can't go home" It breaks my heart!
John will be here through next Sunday. He can get Libbie to do things that I sometimes can't. He stood by her tonight for hours just holding her hand..that's all she wanted and needed was her Daddy's hand. My mom will come back this next week.

Prayer teams gather and PRAY, PRAY, PRAY!!! We need you.

I can't get my computer to work in the room and we go into isolation tomorrow so I am not sure when I will update next. I have been using the hospitals computer in the hallway. Please know that we appreciate everyone who continues to support us in so many ways!

Nancy...THANK YOU for coming by the other day! I really needed the boost!

Dana and Danette...you're such a great source of support for me!

Nanny Bobbi and PawPaw Mark..thanks for all the goodies!!!

Becky

Thursday, June 27, 2002 at 04:20 PM (CDT)

Days-9, -8, -7 ,-6 and -5

I updated yesterday and don't know what I did but it didn't regiter! So here we go again!
Well, Libbie has completed 4 days of chemo and is on her 5th day. She tolerated the Thiotepa pretty well. The first night she was sick all night long but by the second day her meds were tweeked so that she stayed pretty comfortable the next two days. Four baths a day for the first four days...right as it got easier it was over!
She started the Busulfan yesterday and it's been hard on her. She has been getting sick often. They have to draw her blood for drug levels from a peripheral IV and they keep failing. We've always had trouble drawing blood from a peripheral after the initial time. They've had to stick her quite a few times and it's so unpleasant!

Thank you Dr. Chan, Beatriz and Monica for being such exceptional caregivers!!!!

Saturday, June 22, 2002 at 12:15 PM (CDT)

Wow!...Busy week!

Wednesday we took the opportunity to get a little outing into the day before we started all of the procedures on Thursday.
Thursday we arrived for Libbie's surgery at 6:30 a.m. The anesthisiologist was called away to an emergency right as she was about to put Libbie's IV in. was about 8:30. We did not get another anesth. until 12 NOON!
Libbie had the entire surgery holding area entertained though. She did very well and was quite funny the whole time! She was taken to surgery and they found that her bone marrow has become so fiberous that they were only able to pull less than half of what they wanted. The central line went in with no problems, but because of the trouble with the harvest it took them 2 and 1/2 hours instead of the estimated 1 hr.
She then had trouble afterwards with some nausea and just not wanting to move. We finally got out of there between 7 and 7:30.

The next morning Libbie was scheduled for labs and an MRI. Went pretty well except Libbie seems to still be in quite a bit of pain. She had some relief at the MRI after waking up inside and saying "Mom! get me outta here!" They gave her Fentanil (sp.) I can only describe it as Libbie having gone to Happy Hour!

By the end of the day she had started to run a fever so we were back at the hospital from 8p.m. to abouy 10:30. they decided not to keep her because her counts are good right now.

Libbie had another sleepless night. Gave her Motrin and it turned her into a new girl... so long Tylenol 3!

She just walked (slowly) for the first ime in 3 dayS! She seems to be on the mend!

Tomorrow is the day she gets admitted.....

Becky
Today is

Tuesday, June 18, 2002 at 10:17 AM (CDT)

Okay...the insurance issue has been resolved...if I get into details I can't promise I'd be very nice so I am going to bite my tongue and say only that Libbie will be taken care of. ARGH!!!

Everything is back on track. The central line and harvest procedures are scheduled for Thursday and Libbie will be admitted to the hospital on Sunday. Transplant day is July 2.

I'll continue to update as new info comes in....

Becky

Friday, June 14, 2002 at 10:33 PM (CDT)

I am having trouble entering much at this point...We are here in Houston.. and everything has been put off until we clear up some insurance issues. Libbie has been put back on her low dose chemo because of the delay and is having her BAD headaches again...We should find out on Monday how we are to procede.

John and Buster and PawPaw Ron are coming for the day on Sunday. We miss everyone so much already!!

Tom and Andrea Tabler...Thank You..AGAIN
Thank you Nanny Bobbi and PawPaw Mark for letting us hang out.
Tracy...as always...God puts you in the right place at the right time...
Kim F. and David B. thanks for being so helpful and supportive.

We'll let you know what happens on Monday..It better be good or we're gonna sick the big dawgs on 'em!!!

Becky

Friday, June 14, 2002 at 10:33 PM (CDT)

I am having trouble entering much at this point...We are here in Houston.. and everything has been put off until we clear up some insurance issues. Libbie has been put back on her low dose chemo because of the delay and is having her BAD headaches again...We should find out on Monday how we are to procede.

John and Buster and PawPaw Ron are coming for the day on Sunday. We miss everyone so much already!!

Thank you Nanny Bobbi and PawPaw Mark for letting us hang out.
Tracy...as always...God puts you in the right place at the right time...
Kim F. and David B. thanks for being so helpful and supportive.

We'll let you know what happens on Monday..It better be good or we're gonna sick the big dawgs on 'em!!!

Becky

Monday, June 03, 2002 at 05:50 PM (CDT)

Libbie hasn't had a headache since Saturday. YEAH!!! She has been taken off of all chemo and stays on the Agrylin to lower her platelets(804K today) and Amoxil in preparation for conditioning that starts June 16. We found out today that her first visit in Houston is at 8:30 in the morning so we'll have to leave the day before. Boo Hoo One less day to spend with the family. Dr. Lockhart gave us some very encouraging words today though. Libbie has shown over and over again how strong and resilient she is and Doc thinks she will do the same at transplant. We also think the same thing!
She is bouncing off the walls like any other 3 1/2 year old. And bossy!!!!! Oh my word! SHE will make sure she gets the best care...and of course I will be there to back her up!!

As always thank you for your continued prayers! Becky

Monday, June 03, 2002 at 05:50 PM (CDT)

Friday, May 31, 2002 at 12:59 PM (CDT)

Libbie had some more really bad headaches again Wednesday night and yesterday. The docs were concerned enough to have a CT scan done again so we went into Children's Hospital (CHOA) and Libbie spent the day getting IV fluids, nausea meds and a CT scan. By the time we left she looked like she felt pretty good. We got in the truck to come home and before we could make it all the way she already had another headache and felt sick again! The CT scan didn't show anything but minor sinusitis. The docs are now thinking it's side effects from the meds. They had to make sure though because of her high but ineffective platelets.
Today she's having headaches but not getting sick and seems a lot more "perky".
We rented Harry Potter last night and she got to stay up late and watch it so she slept in this morning...she needed it after yesterday!

Tuesday, May 28, 2002 at 09:48 AM (CDT)

Computer problems...ugh!!! Sorry it been so long since the last entry. Hopefully we've gotten the bugs worked out!

Libbie started her low dose chemo on May 1st. She started with Hydroxyurea. It wasn't lowering her counts like the docs would've liked so she was put on 6MP. Her platelets climbed to over a million so then they added the Agrylin she had previously been on to lower the platelets. She is also taking Kytril for nausea and Amoxicillin.
Her personality seems different since she started all these meds and it's something I guess we'll have to get used to for awhile. It has got to make her feel pretty yucky!

I took Libbie into the hospital Sunday morning to have her checked out. She woke up with a serious headache and started throwing up. Even though she has got such a high platelet count, they have been rendered almost ineffective by the meds so the docs were concerned by a "bleed in the brain"...her headache went away and she felt good the rest of the day...thank you GOD!!!

Transplant has been pushed back a week...
June 10th - meeting with pedi surgeon re central line
June 11th - bone marrow aspiration, outpatient
June 13th - central line and bone marrow harvest, outpatient
June 16th - admit to hospital to start high dose chemo
June 25th - T-day!

We continue to thank everyone who has kept us in their thoughts and prayers!

Saturday, April 20, 2002 at 10:37 AM (CDT)

Well, it looks like we might have some tentative dates for the transplant and pretransplant procedures. Her low dose chemo to minimize proliferation of her abnormal blood counts will start April 29th. We understand that there are not really any severe side effects of the low dose and she won't lose her hair quite yet! This is good....
CT scan, echo-cardiogram, and EKG are all being performed as outpatient at Children's Hospital of Austin on April 30th. Other tests also need to be scheduled. We'll be in Houston by May 30th to meet with the pediatric surgeon about the central line, bone marrow aspiration and bone marrow harvest. Monday June 3rd she will have a three lumen catheter (central line) inserted into her chest for blood draws and to receive chemo, meds and the cord blood transplant. The bone marrow aspiration is pretty standard to take a last look at her bone marrow. The harvest is also pretty standard for patients in remission so if they relapse they can be given their own marrow. Libbie is a bit different in that she is not in remission but in a chronic phase. It would only be used as a last resort if the cord blood did not engraft and subsequent transplanted cord blood also did not engraft. She has five 5 out of 6 matches of cord blood at last count and has the best match reserved for her. She also has access to the other matches if she needs them.
Saturday, June 8th she will be admitted to the hospital to start her high dose chemo to get rid of all of her leukemic bone marrow. She will lose her hair at this time! A countdown begins and on Day 0 she gets her new chance at life!!!
Monday, June 17th is transplant day. It is simply a bag hung on an IV pole and run into her central line just like a transfusion. The stem cells know where to go...isn't that amazing?!
These dates could change at any time but so far this is the most we have been able to get the doctors to commit to!

Saturday, April 20, 2002 at 10:37 AM (CDT)

Well, it looks like we might have some tentative dates for the transplant and pretransplant procedures. Her low dose chemo to minimize proliferation of her abnormal blood counts will start April 29th. We understand that there are not really any severe side effects of the low dose and she won't lose her hair quite yet! This is good....
CT scan, echo-cardiogram, and EKG are all being performed as outpatient at Children's Hospital of Austin on April 30th. Other tests also need to be scheduled. We'll be in Houston by May 30th to meet with the pediatric surgeon about the central line, bone marrow aspiration and bone marrow harvest. Monday June 3rd she will have a three lumen catheter (central line) inserted into her chest for blood draws and to receive chemo, meds and the cord blood transplant. The bone marrow aspiration is pretty standard to take a last look at her bone marrow. The harvest is also pretty standard for patients in remission so if they relapse they can be given their own marrow. Libbie is a bit different in that she is not in remission but in a chronic phase. It would only be used as a last resort if the cord blood did not engraph and subsequent transplanted cord blood also did not engragh. She has five 5 out of 6 matches of cord blood at last count and has the best match reserved for her. She also has access to the other matches if she needs them.
Saturday, June 8th she will be admitted to the hospital to start her high dose chemo to get rid of all of her leukemic bone marrow. She will lose her hair at this time! A countdown begins and on Day 0 she gets her new chance at life!!!
Monday, June 17th is transplant day. It is simply a bag hung on an IV pole and run into her central line just like a transfusion. The stem cells know where to go...isn't that amazing?!
These dates could change at any time but so far this is the most we have been able to get the doctors to commit to!

Tuesday, April 16, 2002 at 11:50 PM (CDT)

Today was doctor day for Libbie and she's doing well. Her platelets have gone back up again to 930 so she's had her Agrylin increased. It causes her platelets to not be so "effective" in clotting so that her blood doesn't start clotting in her body. Her white count is 22.7 and her hemaglobin is 9.0. Since her spleen came out in November her Hgb has stayed in the 9's which is good for her energy level!
We have just returned from our Make-a-Wish trip to southern California and let me tell you.....WE DIDN'T WANT TO COME HOME!....The Make-aWish Foundation sent us to Disneyland, Knott's Berry Farm, an Angels baseball game(Libbie is a big baseball fan!) Universal Studios, the Santa Monica Pier, and of course..drumroll..THE BEACH!!What an absolutely incredible group of people! We really needed this time together as a family to have fun and do some really good bonding!! Now that we're back...it's really time to get down to business....

We are starting all the pretransplant procedures now...EKG, echocardiogram, x-rays, ENT and Dentist are all things we will be able to do here in Austin. We have penciled in Monday, April 29th as the start of her low dose chemo. She will receive it for approx. 6wks and then we will need to go to Houston for her bone marrow aspiration and the insertion of a central line into her chest. About ten days after that(recovery time) there will be an 8-day countdown which consists of high dose chemo to get rid of all of her bone marrow (& consequintely her immune system) On Day 0 she will receive her cord blood transplant.

I will enter more into the journal now that we are beginning the pretransplant procedures, so keep checking back!
I read the messages that you leave for Libbie to her so please send lots!!! She gets really tickled when she gets email!!

Thank all of you for your continued prayers and support. Becky

Tuesday, April 16, 2002 at 11:50 PM (CDT)

Tuesday, March 12, 2002 at 11:04 PM (CST)

CHECK OUT NEW PICS OF LIBBIE IN THE PHOTO ALBUM!!

Today was doctor day for Libbie...WBC 21, HgB 10.3 and platelets are up to 1.145 million again so she's been put back on the Agrylin for now. It's looking like transplant may be inching into June. The Make-a-Wish Foundation had granted Libbie a really great trip to the west coast for a week. The whole family is really looking forward to it. Libbie's wish was to go to the beach so they're going to send her to a good one. We'll get to check out Disneyland and hopefully go to a Dodgers game, too. For those who don't know, Libbie loves baseball!!! She can swing a bat like a pro!! We think she'd really love to watch a game. We still have not set firm dates for any of the procedures that will come before the transplant. She has to have lots of tests done, Dental exams, ENT checkup, etc. before she starts her low dose chemo six weeks out from transplant. She also will have her marrow harvested and kept for her at MDA in case they need it. I don't have much more information now. I thank all of you who are keeping us in your prayers and I ask if you would please continue and pass it on! Lots of prayers for my sweet Libbie, please!!!! Becky

Tuesday, March 05, 2002 at 11:12 PM (CST)

Libbie had her labs done today and everything looks pretty good...WBC is 12, HgB 10.8, platelets 473 up from 266 on Friday. Dr. Lockhart still wants to keep her off of the Agrylin for now. Libbie is used to a HbG in the low 8's so having the extra energy of 10.8 is like a 3 year old on espresso!!!! I am GLAD to have it !!! Next appointment is next Tuesday. I hope her numbers hold...Thanks to everyone visiting us here and leaving messages. I read them to Libbie and she gets a really big kick out of them! Thank you for your thoughts and prayers.. Becky

Tuesday, March 05, 2002 at 10:49 PM (CST)

Today Libbie had a regular appointment with Dr. Lockhart here in Austin. Poor Erin, Libbie's favorite nurse in the whole world, had a hard time getting blood. It just didn't want to come out!!! It gave a false reading (platelets 60...NO WAY)so it had to be done again. Not too happy but always the trooper Libbie got through it as she always does...with grace and FOCUS....Platelets are up to 473,(still staying off the Agrylin for now) WBC is 12 and HgB is 10.8. Libbie is used to HgB of low 8's so it's like a 3 yr old on coffee!!!! I'm happy to have it though!!!
Thank all of you for coming to visit us here on the website. I read the entries to Libbie and she gets so tickled it makes me laugh!!! Thank you all so much for your support and prayers..

Becky

Monday, March 04, 2002 at 06:30 PM (CST)

Just got back from MDA on Friday. Found out some of the things we might expect when Libbie goes to transplant. Left with a real positive feeling. Doctor appointment tomorrow to check numbers. Her platelets had come down to 266 on Friday from 733 the week before so she has been taken off the Agrylin. She is now just taking the penicillin which she'll be on until she's 6 after having her spleen removed on Nov. 14 of 2001.

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